You know you need more rest.

You know you should stop before symptoms escalate.

You know that pushing through today might mean paying for it tomorrow.

You know all the pacing advice.

The problem isn’t a lack of knowledge.

The problem is that life keeps handing you responsibilities anyway.

The school run still needs doing.

The bills still need paying.

The washing basket still fills up.

The appointment still has to be attended.

The children still need dinner.

The pet still needs feeding.

The work still needs completing.

Sometimes I read pacing advice and think, “Yes. That’s absolutely correct.”

And then I look at my actual life.

The reality is that many of us are trying to manage chronic illness while also parenting, working, caregiving, maintaining relationships, managing households, attending appointments, and navigating all the ordinary responsibilities of adulthood.

The advice isn’t wrong.

But sometimes it feels incomplete.

Subscribe now

The Fantasy Version of Pacing

The ideal version of pacing often looks something like this:

You notice your symptoms increasing.

You stop immediately.

You rest.

You recover.

You resume activities later.

In reality, it can look more like:

You notice your symptoms increasing.

You still have twenty minutes left before school pickup.

Or a deadline tomorrow.

Or a child who is sick.

Or groceries that need buying.

Or a parent who depends on you.

Sometimes the choice isn’t between resting and not resting.

Sometimes the choice is between two things that both cost energy.

And that’s where many conversations about pacing become much more complicated.

The Guilt Trap

When we know what we “should” be doing, but can’t always do it, guilt often appears.

I have spent years feeling guilty for not pacing perfectly.

Guilty for working when I needed rest.

Guilty for needing rest when work needed doing.

Guilty for not being able to keep up.

Guilty for pushing too hard.

Guilty for not doing enough.

It’s an exhausting cycle.

Over time, I’ve realised that perfect pacing isn’t always available to me.

What is available is making the best decisions I can within the reality I’m living.

Those are not the same thing.

Sometimes There Are No Perfect Choices

This was a difficult lesson for me.

I wanted every symptom flare to have an obvious answer.

If I crashed, surely I must have done something wrong.

If I could just optimise better.

Plan better.

Rest better.

Track better.

Maybe I could avoid every setback.

But life isn’t that neat.

Sometimes I have already stripped my schedule back as far as possible.

Sometimes all the obvious energy drains are already gone.

Sometimes I am already doing the basics.

And there are still more demands than energy available.

That doesn’t mean I’ve failed.

It means I am living with a difficult condition in the middle of a real life.

From Perfect Pacing to Strategic Pacing

These days, I think less about perfect pacing and more about strategic pacing.

I ask myself:

• What absolutely has to happen?

• What can wait?

• What can be simplified?

• What can be delegated?

• What can be done imperfectly?

• What can be abandoned altogether?

Not because I don’t care.

But because energy is finite.

If I have to spend energy somewhere, I want to spend it intentionally.

Sometimes that means choosing my children over a spotless house.

Sometimes it means choosing paid work over hobbies.

Sometimes it means choosing rest over both.

The decision changes from day to day.

The principle remains the same.

The Invisible Work of Adaptation

One thing I wish more people recognised is how much effort goes into adapting life around chronic illness.

The planning.

The rearranging.

The negotiating.

The constant calculation of what can be done today and what must wait.

People often see the outcome.

They don’t see the hundreds of tiny decisions happening behind the scenes.

The meal made simpler.

The outing shortened.

The task postponed.

The rest break squeezed into a busy afternoon.

The recovery day protected after a necessary commitment.

This work is real work.

Even when nobody else notices it.

Giving Yourself Credit

If you’re reading this while trying to manage a chronic illness alongside work, parenting, caregiving, study, or simply the realities of everyday life, I want to offer a gentle reminder.

The goal isn’t perfection.

The goal isn’t becoming the world’s best pacer.

The goal is building a life that is as sustainable as possible within the circumstances you actually have.

Some days you’ll pace beautifully.

Some days you’ll push because life requires it.

Some days you’ll rest more than you wanted.

Some days you’ll do more than you planned.

None of that makes you a failure.

It makes you human.

Living with chronic illness isn’t a puzzle that can always be solved with better planning.

Sometimes it’s an ongoing practice of adapting, adjusting, and making the best choices available in an imperfect situation.

That takes far more skill than most people realise.

Why I Still Plan My Days

This is one reason I continue to use daily planning and symptom tracking tools.

Not because they magically create more energy.

Not because they eliminate every flare.

But because they help me make more informed decisions.

When life is asking more from me than my body can comfortably provide, I need clarity.

I need to know where my energy is going.

I need to identify what truly matters today.

I need reminders that some things can wait.

Planning doesn’t remove the reality of chronic illness.

But it does help me navigate that reality with a little more intention and a little less guilt.

And on difficult days, that can make a meaningful difference.

Share

That’s the problem I’m trying to solve right now — and I want to share how I’m doing it.

The Problem With Being a Complex Case

When you have multiple conditions happening at once — ME/CFS, fibromyalgia, hypermobility spectrum disorder, POTS, gut issues — you are what medicine likes to call a “complex case.” That’s not a bad thing. It just means that getting the most out of every appointment requires a lot more prep work than the average patient.

My GP has 15 to 20 minutes with me. When she’s not with me, she’s with the next patient. She’s not sitting in the background researching my case or following up leads on my behalf. That responsibility sits with me. And the more complex my situation gets, the more I need a system that makes me the project manager of my own health.

Subscribe now

Why I Redesigned My Appointment Prep

For the past several months, I’ve been navigating a fairly new chapter. I was recently released back to my GP after seeing a specialist for my gut issues. The gastroenterologist confirmed there’s no major bowel pathology, but we do have gastritis and gut sensitivity going on, and there are three different tracks to follow going forward — most manageable through my GP, but requiring referrals and coordination to move things along.

At the same time, I’m 40, I’ve had a hysterectomy, and it’s past time I got a full hormone panel. Plus I need a referral to immunology — I’ve long suspected whatever is driving the bigger picture with my health is connected to my immune system. I got sick at the end of university with what turned out to be ME/CFS — essentially the same presentation as long COVID, just 20 years earlier — and my immune system has never quite recovered. Before I started low-dose naltrexone, I was catching every bug going. Now with this current gut flare, some of that has crept back.

So I have a lot to manage, and a lot to advocate for. Which meant my old approach to appointment prep wasn’t going to cut it anymore.

What My Prep Sheet Looks Like Now

I’ve been working on an appointment prep and summary card — something I’m adding to my Etsy store alongside my other worksheets and templates. On one side: the main reason for the appointment, my top three questions (because realistically, three is about all you’ll get through in a short consult), and a brief health summary since the last visit, including pain and fatigue scores.

Three questions feels almost too few, but that constraint is actually the point. It forces me to triage before I walk in the door. What matters most right now? What can wait? What do I need this appointment to move forward on?

Then on the other side, I have an appointment notes section — space to record responses to my questions, capture anything else that comes up in the conversation, and — this part I think is really important — a box specifically for things to research before the next appointment. Because I’ve never left a doctor’s appointment with everything resolved. There’s always a next step, a medication to look into, a referral to chase. Having a dedicated space to write that down means I’m not carrying it all in my head.

Layering in the Data

The appointment prep sheet doesn’t live in isolation. I’ve been building a more connected system around it.

For the past while, I’ve been tracking symptoms in a spreadsheet — one I’ve also made available in my Etsy store — where I log what’s happening day by day and week by week, and it automatically generates summary graphs. Then, at the end of each month, I upload that spreadsheet to an AI conversation and have it analysed. The insights have been genuinely useful. One thing it flagged was that my fatigue often spikes before my gut flares — like a reliable early warning sign. That’s exactly the kind of pattern that’s invisible when you’re living inside it, but obvious when you look at the data.

So by the time I arrive at an appointment, I’ve got: my symptom trends, an AI-generated analysis of those trends, a clear sense of my top priorities, and a structured way to take notes during the visit. That’s a very different starting point than hoping I remember everything on the day.

The Bigger Picture

There’s a certain point in a long chronic illness journey where you start to realise that the system isn’t going to do the heavy lifting for you. I’m 20 years in. I’ve never seen an immunologist, a cardiologist, or a neurologist — specialists that many people with ME/CFS or long COVID seem to see fairly routinely. That’s not a complaint about my current care; I now have private health insurance and a GP who genuinely listens. But I need to know what to ask for. I need to be able to articulate why a referral is worth pursuing, and I need to prioritise intelligently, because my own energy is limited too.

This appointment prep system is my attempt to do that more strategically. It’s how I make sure the things that matter actually get said.

If you’re curious about the appointment prep and summary cards, check them out here.

If you’re going through something similar right now — a new diagnosis, a shift in your care, or just the relentless work of managing a complex condition — drop a note in the comments. We can cheer each other on.

Leave a comment

Subscribe now

Some mornings I wake up feeling almost normal.

Other days I wake up exhausted before I’ve even put my feet on the floor.

For years I relied solely on how I felt to decide what I should do each day. The trouble was that I wasn’t always very good at judging it. Like many people with chronic pain and fatigue, I had a habit of pushing through until my body forced me to stop.

Then I discovered heart rate variability (HRV).

It’s certainly not perfect, but it has become one of the most useful tools I use to guide my pacing.

What is HRV?

Heart rate variability measures the tiny differences in time between each heartbeat.

A healthy nervous system doesn’t beat like a metronome.

Instead, there’s constant variation.

Generally speaking:

• Higher HRV suggests your nervous system is recovering well.

• Lower HRV often suggests your body is under increased stress.

For people living with ME/CFS, fibromyalgia, hypermobility, dysautonomia and many other chronic illnesses, HRV is often lower than average.

Mine certainly is.

Don’t compare yourself with healthy people

This is the biggest mistake I see people make.

You’ll often find charts online saying that women your age “should” have an HRV in the 40s or 50s.

Mine has often been in the 20s.

If I compared myself to population averages every day, I’d feel like I was failing before breakfast.

Instead, I compare today’s score with my own normal.

That’s the number that matters.

My traffic light system

Rather than obsessing over the exact number, I divide my days into three simple categories.

Green day

My HRV is at or above my usual baseline.

Energy feels reasonably good.

These are the days I might:

• go for my walk

• do some gentle strength training

• batch cook

• tackle bigger household jobs

• work on creative projects

Notice what isn’t on this list?

Trying to make up for lost time.

One of the biggest lessons chronic illness has taught me is that green days aren’t for emptying the tank.

They’re simply opportunities to do a little more.

Orange day

My HRV is my average. Sometimes we’re heading higher, sometimes we’re heading lower.

These are the days that used to become boom-and-bust days.

Now they’re just...orange.

Nothing dramatic.

Just information. I do my regular day, up the rest if I feel I need it, don’t push on my walk.

Red day

My HRV is significantly lower than usual.

Or my symptoms have clearly flared.

These become recovery days.

My priorities shift to:

• hydration

• nourishing food

• medication if appropriate

• gentle stretching

• breathwork

• Yoga Nidra

• rest

If I need to cancel plans, I cancel them.

I’ve learned that responding early usually means I recover much faster.

I made a worksheet to help you make your plan, it’s free, read on to grab yours.

Subscribe now

HRV is information—not a judgement

This is perhaps the most important thing I’ve learned.

A low HRV isn’t a moral failing.

It doesn’t mean you’ve done something wrong.

Sometimes your score will be lower because:

• you didn’t sleep well

• you’re under emotional stress

• your body is fighting an infection

• hormones are doing what hormones do

• your nervous system simply needs more recovery

Your watch isn’t telling you to feel guilty.

It’s simply giving you another piece of information.

The things that improve HRV are also good self-care

One thing I love about HRV is that improving it doesn’t usually require expensive gadgets.

The habits that tend to support HRV are the same ones that support living well with chronic illness:

• drinking enough water

• eating regularly

• gentle movement

• spending time outdoors

• good sleep habits

• breathwork

• meditation

• Yoga Nidra

• pacing

None of these are magic fixes.

I still have low-HRV days. More than I’d like.

But together, they’ve helped me become much more consistent.

If you don’t have a smartwatch...

Don’t worry.

You absolutely don’t need HRV to pace well.

Long before I owned a wearable, I paced using my symptoms.

HRV is simply another tool.

One that helps me make decisions with a little more confidence.

My biggest takeaway

Learning about HRV has changed one thing more than anything else.

It has helped me stop asking:

“How much can I get done today?”

And start asking:

“What does my body need from me today?”

That shift has made all the difference.

Grab your free worksheet here

Share

Have you downloaded the worksheet and made your plan? Is it helping?

Leave a comment

I’ve been talking for a little while now about the potential role of AI in chronic illness management. I recently published an article on Substack exploring whether we should consider using AI at all, and one of the things that surprised me was discovering that clinicians are already researching this. There are papers written by clinicians, for clinicians, looking at how AI can support people with chronic illness—particularly in the areas we have the most control over, such as day-to-day decisions, lifestyle management, symptom tracking, and self-management.

The potential is there.

The question is: how do we actually use it safely and effectively?

The Problem With Traditional Symptom Tracking

I’ve spent years creating and refining my own symptom trackers.

I’ve had paper trackers. Printable trackers. Pain management plans. Spreadsheets.

And they’ve all been helpful.

But I eventually realised I was still disadvantaging myself.

When you live with chronic pain, fatigue, brain fog, or multiple health conditions, it’s incredibly difficult to identify patterns accurately. You can only analyse as much information as your brain has the capacity to process.

You might know, generally speaking, that your pain averages around a certain level. But when I started using a symptom management spreadsheet that I created and then asked AI to analyse the data, it found patterns I hadn’t seen.

One of the biggest discoveries was that my fatigue consistently increased before my gut flares.

The systemic symptoms appeared before the digestive symptoms.

Interestingly, that aligns with everything my testing has shown so far. Despite extensive investigations, we’ve ruled out diagnoses like Crohn’s disease and ulcerative colitis. There is gastritis, but there doesn’t appear to be a gut-specific disease driving everything. Something systemic is happening, likely involving my immune system, and we’re still working through that process.

Without good data, I would never have spotted those patterns.

Subscribe now

Complexity Matters

Many of us are medically complex.

Even when people share the same diagnosis, symptoms can present very differently. Add additional conditions into the mix and everything starts interacting with everything else.

For a long time I struggled to distinguish between my baseline symptoms, my gastritis symptoms, and the symptoms associated with larger flare-ups.

At one point my doctor suggested that perhaps my gut had simply become sensitised. The theory was that calming and relaxing the system might help retrain it.

But my tracking showed something important.

There were distinct periods of severe spasms, pain, and flare-ups—and distinct periods when those symptoms weren’t present at all.

If my nervous system was simply stuck in a constant state of sensitisation, I would expect those symptoms to be constant.

That information mattered.

The better we understand what’s happening in our own bodies, the better we can communicate it to our healthcare providers.

Why I Built a Hybrid Tracking System

I reached a point where I was tired of being disadvantaged.

I’ve lost enough years.

I’ve spent enough money, time, and energy trying to find answers.

We’re still not at the finish line, but we’re closer than we’ve ever been—and a big part of that is because I’ve become more proactive.

So I started building systems for myself.

I’ve recently reopened my Etsy store, which has evolved from years of refining symptom trackers, pain management plans, and practical tools that I personally use.

The newest addition is what I’m calling a hybrid tracking system.

The idea is simple:

• Print a daily symptom tracking sheet.

• Complete it throughout the week.

• Once a week, transfer the information into a spreadsheet.

• Optionally use AI to help with data entry and analysis.

If your handwriting is reasonably tidy, you can upload photos of your completed tracking sheets along with the spreadsheet and ask AI to transfer the information for you.

Then you can ask it to analyse the data.

That’s where things start becoming really useful.

We’re no longer asking our exhausted, brain-fogged selves to manually identify patterns across months of information.

We’re using available technology to support the cognitive challenges that often come with chronic illness.

What Makes This Useful?

The most valuable part isn’t actually the tracking.

It’s the dashboard.

The dashboard provides averages, trends, summaries, and visual information that can be quickly reviewed, printed, screenshotted, or taken to appointments.

Because let’s be honest.

Doctor appointments are expensive.

They’re short.

At my practice I get twenty minutes. Some people get less.

You need to walk in knowing what matters.

You need to communicate clearly.

You need to be able to summarise what’s been happening quickly.

Good tracking helps with that.

Better Communication Leads to Better Care

One of the biggest lessons I’ve learned is that sometimes we’re talking past our healthcare providers without realising it.

The issue isn’t always that they’re not listening.

Sometimes we’re using different language.

I experienced this with endometriosis investigations.

Doctors often ask very specific questions because they’re trying to assess symptoms in particular ways. For example, they might ask how frequently you need to change pads or tampons.

But there can be related symptoms that don’t come up unless you know the language to describe them.

The more accurately we can track and communicate our experiences, the more likely we are to receive appropriate investigations and treatment.

There are so many things in my own health journey that I wish had been identified sooner.

Tracking Isn’t About Obsessing

I think this is important to say.

I’m not sitting around all day thinking about my illnesses.

I do my tracking.

I get on with my day.

I follow my symptom management plan.

I get on with my day.

The reason I talk about these things publicly is because I want your journey to be shorter than mine.

I’ve been navigating this for over twenty years.

If I learn something useful, I want to share it.

That’s why I’ve spent so much time creating these systems.

Not because I think everyone should spend all day analysing symptoms.

But because the right tools can help us spend less time thinking about them.

The Evolution of Tracking

It feels like we’re entering the next generation of symptom tracking.

We’ve gone from:

• Printable trackers

• Fillable trackers

• Dynamic spreadsheets

And now we’re beginning to combine those tools with AI support when it’s helpful.

If you’re not interested in AI, that’s completely fine.

You don’t need it.

The spreadsheet still works.

The tracking system still works.

The goal has never been to replace your judgement.

The goal is to make symptom management more accessible for people dealing with fatigue, pain, cognitive dysfunction, and limited energy.

Because when you’re unwell, you don’t need complicated systems.

You need simple systems.

You need brain-fog-friendly systems.

You need tools that help you gather useful information and communicate it effectively.

And if technology can help us do that, I think it’s worth exploring.

I’d love to know how you track your symptoms.

Do you still use paper trackers?

Do you use an app?

Have you found a spreadsheet system you like?

Have you experimented with AI?

Let me know in the comments. I’d love to hear what’s working for you.

Leave a comment

Share

Check out the Symptom Tracking Hybrid System:

I hope you are well.

Here in Auckland, NZ, we’re into Winter. Chill mornings. Rain.

The hockey season is in full swing, and with three kids playing, it feels like it’s a significant part of our lives! I’m struggling a bit with the seven days a week of early starts (we go to church on Sunday mornings). But I’m working on the down times.

Here’s a few updates for you:

Podcast Interview

I had a conversation with Danny from Health Hats Podcast about the (mindful) use of AI in our health care journey. You can listen or watch here.

Here’s a small snapshot:

The fatigue was signaling two days early

Melissa: I do a lot of data analysis in my part-time job, so I thought, let’s get serious about my data analysis. I moved my symptom tracking from a physical book to a spreadsheet. Then I created a prompt where I upload it once a month and say, “Here’s my data. Tell me what you’re noticing that I’m not.” It notices things I don’t.

Health Hats: Like what?

Melissa: It was the post-exertion malaise flares that I wasn’t quite understanding.

Health Hats: Post-exertion malaise. That’s the blowback from overdoing it, the hallmark of ME/CFS and other energy-limiting conditions?

Melissa: Yes. It also picked up that when I was having my gut flares, my fatigue would signal a couple of days beforehand. Every time I had a gut flare, my fatigue would worsen beforehand. So, it’s now pretty clear that whatever’s going on with my gut is systemic. It’s part of a larger situation, not just related to my gut.

Melissa: The data analysis and the research have been so helpful. I say, do some deep research, and I want you to talk to me about this topic, and it does. But you have to be very clear about what you want it to do. There’s a lot to learn about prompting. It’s very nuanced.

Listen

MCAS and Sodium Cromoglycate

My doctor is sure that what I have, and what caused the severe gut issues, is MCAS. Mast Cell Activation Syndrome. A condition that goes hand in hand with hypermobility spectrum disorder and postural orthostatic tachycardia syndrome.

I shared about MCAS in this post.

I’m on week two of the Sodium Cromoglycate, mast cell stabiliser medication. It takes several weeks to months to see if it’s working. But, I think it is working at least a little. I haven’t had a severe gut flare since my last colonoscopy - so around a month, which is a huge relief.

I will report back when I know more.

Subscribe now

Creating

I have been hard at work on my crochet projects and I’m working on a line of brain fog friendly patterns. Why? Because I got tired of hard to read patterns full of acronyms with fussy stitches, colour changes and rushed instructions. This will be a slow burn piece of work.

Here’s my most recent crochet creation:

Writing

My book Pages and Packbonds is out in the world. This one is so fun - it’s witch x shifter fated mates romance with Beauty and the Beast vibes, set in a bookstore!

Did you know I make all of my stories available in libraries? So you can request it from your local library. You can get it from Overdrive, Libby and you can also ask your library to order it physically.

Resources to help you

I added a Complete Guide to Symptom Tracking booklet to the Spoonie Health Tracker Spreadsheet to make it even easier to use and understand.

ME/CFS Pacing Planner - new in my Etsy store.

Talk to our kids about chronic illness - YouTube video.

That’s all for now!

Take care. Keep warm or keep cool (depending where you are). And don’t forget to follow on Instagram if you’re on there too.

Share

Leave a comment

Not just emotionally exhausting. Physically exhausting. Cognitively exhausting. Nervous-system exhausting.

So many of us are carrying invisible things:
chronic illness
burnout
grief
anxiety
pain
caregiving
parenting
sensory overwhelm
brain fog
sleep deprivation
stress that never fully leaves the body.

And yet so much media still assumes we have endless emotional energy.

Everything is high stakes.
Everything is brutal.
Everything is devastating.
Everything must shock us to prove it has depth.

Somewhere along the way, exhaustion became normal.

I didn’t consciously decide to start seeking softer stories. My body decided for me.

There was a point where I realised I could no longer tolerate books that left me emotionally shredded. I didn’t want cruelty mistaken for depth. I didn’t want relentless tension. I didn’t want stories that demanded more nervous system resources than I actually had available.

I still wanted emotional intensity.
I still wanted beauty.
I still wanted yearning, love, transformation, hope.

But I wanted stories that felt safe to inhabit.

Stories that let my shoulders unclench.

Stories where tenderness mattered.

Stories where people cared for each other properly.

That’s part of why I started writing the kinds of books I now write.

Not because I thought:
“I should write cozy romance.”

But because I naturally create worlds that feel emotionally survivable.

Worlds where people are allowed to rest.
Where softness is not weakness.
Where found family matters.
Where care matters.
Where gentleness matters.
Where happily ever afters are not embarrassing or simplistic, but deeply hopeful.

And increasingly, I think this need goes beyond genre.

I think there are a lot of exhausted readers quietly adapting the way they read in order to keep reading at all.

Some people need audiobooks because holding a physical book hurts.

Some people need short books because brain fog makes long narratives difficult to sustain.

Some people switch between audio and ebook depending on fatigue levels.

Some need large print because migraines and visual exhaustion make standard formats inaccessible.

Some reread comforting stories because unpredictability is overwhelming.

Some stop reading entirely for years, not because they stopped loving stories, but because life consumed all their energy.

I think publishing underestimates how many people live like this.

Accessibility in reading is often framed purely as an educational or technical issue. But there’s also an emotional accessibility to stories.

Can a tired person enter this world safely?

Can someone already overwhelmed remain emotionally intact while reading it?

Can someone with limited energy actually finish it?

Can stories make room for exhausted people too?

I think they should.

That doesn’t mean every story must be cozy. Or gentle. Or hopeful.

But I do think soft stories deserve more respect than they often receive.

Comfort is not lesser.
Tenderness is not shallow.
Hope is not naive.

Sometimes softness is the very thing helping people survive difficult seasons of life.

As both a reader and writer, I’ve become increasingly interested in what I think of as nervous-system-friendly fiction.

Stories that still contain emotion, stakes, romance, longing, transformation and magic — but without demanding suffering as the price of entry.

Stories that understand rest.

Stories that understand care.

Stories that understand what it means to be exhausted.

Maybe that sounds small.

But I don’t think it is.

I think there should be more fiction for exhausted people.

So I started writing it.

My pen name, cozy fantasy romance:

Affiliate notice: Please note some of my links are affiliate links. If you make a purchase using one of these links, I may make a small commission at no extra cost to you.

My personal name cozy romance with chronically ill characters:

Subscribe now

Share

I filled in hourly schedules.

I created ambitious to-do lists.

I planned weeks in advance.

And then I felt frustrated when my body didn’t cooperate.

What I eventually realised was that the problem wasn’t my discipline.

The problem was that I was planning around time instead of energy.

Most planning systems assume one thing:

That your energy will be reasonably consistent from day to day.

For many people living with chronic illness, that’s simply not true.

Some days I wake up feeling capable and clear-headed. Other days, getting dressed and making breakfast feels like enough. Most days fall somewhere in between.

Time Is Not the Resource

When you’re living with a condition like ME/CFS, chronic pain, Long Covid, fibromyalgia, hypermobility-related fatigue, or many other chronic illnesses, the limiting factor often isn’t the number of hours available.

It’s the amount of energy available.

On paper, I might have an entire day free.

That doesn’t mean I have a full day’s worth of capacity.

Some tasks cost more energy than others.

Driving to an appointment might use more energy than two hours of desk work.

A busy social event might require a recovery day afterwards.

Even enjoyable activities can have an energy cost.

When I started viewing energy as a limited resource rather than assuming time was the resource, things began to make more sense.

Subscribe now

Understanding the Boom-and-Bust Cycle

Many of us become trapped in what is often called the boom-and-bust cycle.

A good day arrives.

We feel better.

We catch up on housework.

Run errands.

Answer emails.

Tackle projects we’ve been postponing.

Finally, we’re getting things done.

Then the crash comes.

The symptoms worsen.

The fatigue deepens.

Everything becomes harder.

The next few days—or weeks—are spent recovering from the “good day.”

I know this cycle well.

For a long time, I believed good days were opportunities to make up for lost time.

Now I see them differently.

Good days are not proof that my illness has disappeared.

They’re simply days when I have a little more energy available.

That energy still needs to be managed wisely.

Energy Budgeting

One concept that helped me enormously was thinking of energy like a bank account.

Every day begins with a different balance.

Some days the account is reasonably healthy.

Other days it’s already running low before I’ve even started.

The challenge is that unlike money, we don’t always know our exact balance.

We estimate.

We pay attention.

We learn our patterns.

We adjust.

If I spend beyond my energy budget, my body usually sends me the bill later.

Sometimes that’s increased fatigue.

Sometimes it’s pain.

Sometimes it’s brain fog.

Sometimes it’s a flare that lasts far longer than the activity itself.

Energy budgeting isn’t about doing less for the sake of doing less.

It’s about spending your limited energy where it matters most.

Planning Around Capacity

One of the biggest mindset shifts for me was stopping the daily question:

“What should I get done today?”

And replacing it with:

“What does my body realistically have capacity for today?”

Those questions produce very different plans.

The first tends to create pressure.

The second creates flexibility.

When I assess my symptoms, sleep, pain levels, and overall energy before planning my day, I make better decisions.

I might postpone a task.

Break something into smaller steps.

Schedule extra rest.

Or simply decide that today is a low-capacity day and plan accordingly.

None of those choices are failures.

They’re adaptations.

Learning to Work With My Body

I used to spend a lot of energy fighting reality.

I planned for the person I wished I was.

The person with unlimited stamina.

The person who could always follow through on an ambitious schedule.

The person who never needed recovery time.

The trouble was that my actual body kept reminding me that I wasn’t that person.

What changed wasn’t my illness.

What changed was my relationship with it.

I started listening earlier.

Planning more realistically.

Leaving room for uncertainty.

Building rest into my days instead of treating it as something I had to earn.

The result wasn’t perfection.

But it was far more sustainable.

And sustainability matters a lot when you’re playing the long game of chronic illness.

Why I Created a Daily Planning Worksheet

This is ultimately why I built my Daily Planning worksheet.

I wanted a simple way to combine symptom awareness, energy assessment, and daily planning in one place.

Instead of planning based on what I wish I could do, it helps me plan based on what my body is actually telling me today.

Before I decide what belongs on my to-do list, I check in with my sleep, symptoms, treatments, mood, and energy levels.

Then I can match my plans to my capacity rather than my expectations.

Some days that means accomplishing quite a lot.

Some days it means focusing on rest, self-care, and the essentials.

Both are valid.

Because the goal isn’t to squeeze as much as possible out of every day.

The goal is to create a life that is sustainable, adaptable, and gentle enough to support your health over the long term.

If you’ve been stuck in the cycle of planning for the person you wish you were instead of the person you are today, perhaps this shift—from planning around time to planning around energy—might help you too.

Share

This article is a summary of the condition. If you want references/extra reading, see the end.

What Are Mast Cells

Mast cells are part of your immune system. Think of them as the body’s alarm system — sentinel cells stationed in every tissue, watching for threats and ready to respond immediately when they detect danger.

They live in your gut wall, your skin, your joints, your bladder, your lungs, your brain, your blood vessels, your uterus — essentially everywhere. When they detect a threat — an infection, an allergen, an injury — they activate and release a cocktail of chemical signals called mediators. These mediators raise the alarm, trigger inflammation, bring other immune cells to the area, and start the healing process.

In a healthy system, mast cells activate appropriately, do their job, and then settle back down. The inflammation resolves. The alarm turns off.

In MCAS, the alarm doesn’t turn off properly. Mast cells activate too easily, in response to things that shouldn’t trigger them, and release their mediators into whatever tissue they’re living in — causing inflammation and dysfunction throughout the body simultaneously.

Subscribe now

What Triggers Mast Cells In MCAS

In classic allergic reactions, mast cells are triggered by allergens through IgE antibodies — the mechanism behind anaphylaxis and severe allergies.

But in MCAS — particularly the type associated with hypermobility and post-infectious conditions — the triggers are different and far more varied:

Physical exertion beyond a certain threshold. Stress — emotional or physiological. Hormonal fluctuation — particularly oestrogen shifts across the menstrual cycle or in perimenopause. Temperature changes — heat especially. Infections — even minor ones that a healthy immune system would handle easily. Certain foods — not in an allergic sense but through histamine content, fermentation, or direct mast cell stimulation. Fragrances and chemicals. Sleep deprivation. The cumulative combination of multiple smaller triggers on the same day.

This is why MCAS flares can seem random and unpredictable. It’s not usually one trigger — it’s the total load of triggers on any given day crossing a threshold. Everything costs something, and when the costs exceed the system’s capacity, a flare occurs.

What Mast Cells Release And What It Does

When mast cells degranulate — the technical term for them releasing their contents — they release over 200 different chemical mediators. The most well known is histamine, but histamine is just one of many.

Histamine causes itching, flushing, gut motility changes, increased acid production, and blood vessel dilation.

Prostaglandins cause pain, inflammation, cramping, and contribute to conditions like endometriosis.

Leukotrienes cause airway and gut smooth muscle contraction — contributing to spasm and breathing difficulties.

Tryptase drives inflammation and tissue remodelling.

Substance P and nerve growth factor sensitise pain pathways — causing pain to be felt more intensely and at lower thresholds than normal.

Cytokines — inflammatory signalling proteins that drive widespread systemic inflammation and fatigue.

Because these mediators are released into whatever tissue the mast cell lives in, the symptoms appear wherever mast cells are most concentrated or most activated — which in any given person might be the gut, the bladder, the joints, the skin, the brain, or all of them at once.

Why It Looks Like So Many Different Conditions

This is the core reason MCAS goes undiagnosed for an average of seven to ten years. Because mast cells live everywhere, MCAS produces symptoms everywhere — and those symptoms get attributed to whichever specialist happens to be seeing that part of the body.

The gastroenterologist sees IBS. The gynaecologist sees endometriosis. The rheumatologist sees fibromyalgia. The urologist sees interstitial cystitis. The neurologist sees headaches and fatigue. The immunologist sees recurrent infections. Nobody sees the same patient — they each see one piece of a whole.

MCAS has been found to be an underlying or contributing mechanism in:

Irritable bowel syndrome — mast cell activation in the gut wall causing inflammation, calprotectin elevation, spasm, pain, and motility disruption without visible mucosal disease on standard investigation.

Endometriosis — mast cells drive the growth and persistence of endometriotic lesions and amplify the disproportionate pain associated with them.

Fibromyalgia — mast cell mediators sensitise pain pathways throughout the body, producing widespread musculoskeletal pain without structural damage.

ME/CFS — mast cell activation in the central nervous system produces neuroinflammation causing profound fatigue, cognitive dysfunction, and post-exertional malaise.

Interstitial cystitis — mast cell activation in the bladder wall causing chronic pain, urgency, and frequency without infection.

Migraines and chronic headaches — mast cells in the meninges and around cerebral blood vessels releasing mediators that cause neurogenic inflammation and vascular changes.

Autoimmune gastritis — mast cell activation in the gastric mucosa contributing to chronic inflammation and parietal cell damage.

POTS and dysautonomia — mast cell mediators disrupt autonomic signalling, causing heart rate dysregulation, blood pressure instability, and gut dysmotility.

Leave a comment

The HSD Connection

Hypermobility Spectrum Disorder and hypermobile Ehlers-Danlos Syndrome are connective tissue conditions where the structural proteins — primarily collagen — are more flexible and less stable than typical. Connective tissue is everywhere in the body, and mast cells live in connective tissue.

In people with HSD, the connective tissue environment is inherently less stable. This appears to make mast cells less stable too — more easily triggered, less able to return to a resting state after activation. The exact mechanism is still being researched, but the clinical association is strong and consistent.

HSD, MCAS, and dysautonomia — autonomic nervous system dysfunction — form a recognised triad that is found together far more often than chance would predict. Each one amplifies the others. HSD destabilises mast cells. Mast cell mediators disrupt autonomic signalling. Dysautonomia triggers further mast cell activation through stress signalling. The three conditions form a self-reinforcing cycle.

This triad is found at dramatically higher rates in women than men, predominantly presents in women of reproductive age, and is strongly associated with endometriosis.

The Post-Infectious Trigger

Many people with MCAS can identify a turning point — an infection, a surgery, a period of extreme stress — after which everything escalated. This is the post-infectious trigger.

A severe illness can permanently reset the mast cell activation threshold. In most people, mast cells that were activated during an infection gradually return to their pre-illness resting state as the immune system resolves the infection. In people with an underlying vulnerability — HSD, genetic predisposition, prior immune dysregulation — the threshold doesn’t fully reset. Mast cells remain primed at a higher baseline activation level.

This is the same mechanism now being identified in long COVID. COVID-19 acts as a potent mast cell activator in susceptible individuals, and in some people this activation persists long after the virus has been cleared. The multi-system symptoms of long COVID — fatigue, gut problems, cognitive dysfunction, pain, autonomic dysfunction — map almost exactly onto the MCAS symptom picture. Long COVID researchers are essentially describing, in a new population, what people with post-infectious MCAS have been experiencing for decades.

For people whose post-infectious threshold shift happened years or decades ago — following a different severe illness — the long COVID research is both validating and directly applicable. The mechanisms are the same. The emerging treatments are the same. The research that was chronically underfunded for ME/CFS is now receiving the attention it always deserved, applied to the same biology.

Why Standard Tests Are Normal

This is one of the most frustrating aspects of MCAS for both patients and clinicians. Standard investigations — endoscopies, biopsies, MRI, blood tests — are typically normal or near-normal, even during active symptomatic periods.

The reason is that mast cells live primarily in the submucosal layer of the gut wall — below the mucosal surface that endoscopy and standard biopsies assess. The inflammation they drive is submucosal — invisible to a camera looking at the surface, and often missed by standard biopsy protocols that don’t specifically stain for mast cells.

Calprotectin — the stool inflammatory marker — can be elevated because mast cell degranulation triggers secondary neutrophil recruitment that calprotectin measures. But the mast cell event itself is the upstream cause that standard investigation doesn’t capture.

This is why people with MCAS often spend years being told their investigations are normal, their symptoms are functional, and there is nothing wrong with them — when in fact the problem is real, biological, and simply invisible to the tests being ordered.

Diagnosis

MCAS diagnosis is challenging because there is no single definitive test that confirms it. Diagnosis typically involves a combination of:

Clinical history — multi-system symptoms, episodic flares, identifiable triggers, response to mast cell-targeted treatment.

Elevated mast cell mediators — serum tryptase during a flare, 24-hour urine prostaglandin D2, 24-hour urine histamine and methylhistamine, urine leukotriene E4. These need to be collected during or shortly after a symptomatic episode to capture the active mediator release.

Mast cell staining of biopsies — CD117 and tryptase immunohistochemistry on tissue samples can show elevated mast cell density in the gut wall or other tissues. More than 20 mast cells per high power field in colonic tissue is considered diagnostic of mastocytic enterocolitis.

Response to treatment — if mast cell-stabilising medications produce significant symptom improvement, this supports the diagnosis even when other testing is inconclusive.

The Consensus-2 diagnostic criteria require symptoms in two or more body systems, evidence of mast cell mediator release, and response to mast cell-targeted treatment.

Treatment

Treatment for MCAS is layered and built over time. No single medication fixes everything — the goal is reducing the total mast cell activation burden from multiple angles simultaneously.

Layer one — Stabilise mast cells: Sodium cromoglicate — prevents mast cell degranulation in the gut specifically. Poorly absorbed systemically so acts almost entirely in the gut lumen. Particularly relevant for gut-predominant MCAS. Ketotifen — broader mast cell stabiliser with antihistamine properties. Used systemically rather than just in the gut.

Layer two — Block released mediators: H1 antihistamines — cetirizine, loratadine, fexofenadine. Block H1 histamine receptors. Often insufficient alone in non-IgE MCAS where histamine isn’t the dominant mediator. H2 antihistamines — famotidine. Blocks H2 receptors in the gut and stomach. Also has direct mucosal protective effects. Montelukast — blocks leukotriene receptors. Often effective in people who don’t respond to antihistamines because it targets a different mediator pathway. Aspirin — blocks prostaglandin pathways in some patients.

Layer three — Reduce triggers: Low histamine diet — reduces exogenous histamine load on an already overactivated system. Pacing — prevents post-exertional mast cell activation. Stress regulation — not as a psychological intervention but as a physiological one. Autonomic stress directly triggers mast cell degranulation through cortisol and adrenaline pathways. Hormonal stabilisation — HRT in people with early ovarian insufficiency or perimenopause, since oestrogen stabilises mast cells and fluctuating oestrogen destabilises them.

Layer four — Address root drivers: Low dose naltrexone — modulates microglial and mast cell activation through toll-like receptor pathways. Relevant to both MCAS and the neuroinflammatory component of ME/CFS. Mestinon — for the dysautonomia component, improving autonomic signalling that in turn reduces mast cell triggering through the nervous system. Immunoglobulin replacement — in people with concurrent immune deficiency, addressing the deficiency reduces the infectious triggers that activate mast cells.

What Recovery Looks Like

MCAS is not currently curable — but it is manageable, and for many people the right combination of stabilisation, trigger reduction, and treatment of root drivers produces dramatic improvement in quality of life.

The goal is not the elimination of all symptoms. It is raising the activation threshold high enough that daily life no longer consistently crosses it — that flares become less frequent, less severe, and more predictable. That the body stops being in a constant state of alarm.

For some people, addressing a significant trigger — a hormonal imbalance, a concurrent immune deficiency, a dietary pattern — produces dramatic improvement relatively quickly. For others, it is a slow accumulation of small gains across multiple treatment layers over months to years.

What does not work is treating each symptom in isolation — managing the gut with gastroenterology, the fatigue with ME/CFS protocols, the pain with rheumatology, the bladder with urology — without addressing the underlying mast cell activation that is driving all of them. The fragmented approach is why so many people with MCAS spend years accumulating diagnoses without improving.

The integrated approach — seeing the whole person, understanding the common mechanism, and treating the underlying dysregulation rather than its individual expressions — is what changes the trajectory.

If you have been told you have IBS, fibromyalgia, ME/CFS, endometriosis, interstitial cystitis, POTS, or multiple unexplained symptoms across different body systems — and if your investigations have consistently come back normal despite significant symptoms — MCAS is worth asking about.

You are not making it up. You are not anxious. You are not somatising stress. You have a real, biological condition that standard investigations were not designed to find, expressed through a cell type that lives everywhere in your body simultaneously.

The research is catching up. The frameworks are being built. The treatments exist. Finding a clinician who understands the complete picture — rather than one piece of it — is the most important step.

Share

References/Further Reading by Section

The HSD/hEDS, POTS and MCAS Triad

Genetic basis of mast cell hypersensitivity in hEDS — 2024 paper specifically linking connective tissue disorder to mast cell instability. Shirvani P et al. Decoding the Genetic Basis of Mast Cell Hypersensitivity and Infection Risk in Hypermobile Ehlers-Danlos Syndrome. Current Issues in Molecular Biology, 2024. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11506785/ Oxford Academic

The triad — clinical overview with statistics — one study found 31% of patients with both POTS and EDS also had MCAS, versus approximately 2% of those without POTS or EDS. In another study, 42% of POTS patients with allergic and GI symptoms showed mast cell mediator abnormalities. https://www.eds.clinic/articles/eds-pots-mcas-trifecta American Gastroenterological Association

2024 review — hypermobility in ME/CFS, fibromyalgia, POTS and long COVID — a 2024 review found that hypermobility has been detected in 30 to 57% of patients with ME/CFS, fibromyalgia, POTS, and long COVID, with proposed shared pathophysiology involving immune dysregulation and autonomic dysfunction. https://www.thefibroguy.com/blog/pots-eds-and-mcas-understanding-the-trifecta/

Diagnosis

The Consensus-2 Diagnostic Criteria — the foundational paper by Afrin and Molderings that established the broader diagnostic approach beyond tryptase-only testing. Afrin LB, Molderings GJ et al. Diagnosis of mast cell activation syndrome: A global consensus-2. De Gruyter, 2020. Full paper: https://www.degruyterbrill.com/document/doi/10.1515/dx-2020-0005/html The Lancet

Free PDF via Mast Cell Action: https://www.mastcellaction.org/assets/_/2021/05/26/3fe9e463-1058-4c0f-863a-f2524839949d/2020-afrin-diagnosis-of-mast-cell-activation-syndrome-a-global-consensus-2-final.pdf

MCAS and Endometriosis

Mast cells actively recruited to endometriotic lesions — the key 2022 paper. McCallion A et al. Estrogen mediates inflammatory role of mast cells in endometriosis pathophysiology. Frontiers in Immunology, 2022. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9396281/ ScienceDirect

Mast cells, oestrogen and pain in endometriosis — 2025 review. Wang J et al. Unravelling the Intricate Link: Mast Cells and Estrogen-Induced Pain Sensitization in Endometriosis. International Journal of Biological Sciences, 2025. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12509920/ MDPI

MCAS and endometriosis — clinical overview with prevalence data — several studies have reported a high prevalence of mast cells in various tissues and fluids collected from women with endometriosis, with some reporting elevated levels of mast cells in up to 80% of cases. https://www.gynecologiconcologyinstitute.org/news/endometriosis/endometriosis-news/mast-cell-activation-syndrome-and-endometriosis-a-potential-link-for-unexplained-symptoms-in-women/

MCAS, Long COVID and ME/CFS

Long COVID patients suffer the same clinical syndrome as MCAS patients — the Weinstock study cited across the literature. Sumantri S, Rengganis I. Immunological dysfunction and mast cell activation syndrome in long COVID. Asia Pacific Allergy, 2023. https://pubmed.ncbi.nlm.nih.gov/37389095/ MDPI

Mast Cell Action — MCAS and Long COVID — accessible overview with key references including the Weinstock paper, the Wechsler paper on post-acute COVID syndrome, and treatment approaches. https://www.mastcellaction.org/mcas-and-long-covid

Long-term mast cell activation in small bowel two years post COVID — directly relevant to the gut inflammation/calprotectin connection. Augustin M et al. Long-Term Mast Cell Activation Patterns in Systemic and Tissue-Resident Compartments Following COVID-19: Insights from a 2-Year Post-Infection Study. Open Forum Infectious Diseases, 2025. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11779031/ MDPI

Mast cell activation in ME/CFS — clinical relevance study — 2024/2025 cohort study. The Clinical Relevance of Mast Cell Activation in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12651186/ Markham Integrative Medicine

Antihistamines improving long COVID symptoms attributed to mast cell activation — treatment evidence. Salvucci F et al. Antihistamines improve cardiovascular manifestations and other symptoms of long-COVID attributed to mast cell activation. Frontiers in Cardiovascular Medicine, 2023. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10388239/

Patient Resources and Organisations

Mast Cell Action — the most comprehensive UK-based MCAS patient organisation. Excellent plain-English resources, research summaries, management guides, and community support. Run by people with MCAS.

https://www.mastcellaction.org/

Their resources page specifically includes the Consensus-2 paper, GI symptom research, and the EDS toolkit: https://www.mastcellaction.org/resources-1

The Mast Cell Disease Society (TMS) — US-based, strong treatment and management information: https://tmsforacure.org/treatments/

International Mastocytosis and Mast Cell Diseases Awareness Day — global resource connecting patients, caregivers, and clinicians worldwide:

https://mastocytosis-mcas.org/

And then the data just… sits there.

You might glance at it before appointments. You might notice, in a vague way, that Tuesdays are usually harder or that something happened around that cold you had in August. But turning rows of numbers into actual insight — into the kind of pattern-spotting that could genuinely help you manage your health — is a skill most of us were never taught. And it takes energy most of us don’t have.

This is the first thing you may like to use AI for.

Before we begin: a note you need to read

I’m a patient advocate and a chronic illness patient myself — not a doctor, not a researcher, and not a medical professional of any kind. Everything in this series comes from my own lived experience and research, and it is meant to inform and inspire, not to replace your medical care.

Please use AI as a tool alongside your healthcare team, not instead of them. AI can help you spot patterns, ask better questions, and understand information — but it cannot diagnose you, and its output should always be verified with your doctor or specialist. I’ll say this more than once throughout this series, because it genuinely matters.

The goal here is to help you show up to your appointments better prepared, more informed, and with your own data actually making sense to you. That’s it.

Do your own research. Trust your body. And always loop in your care team.

If you’re curious about the conversation on whether we should be using chronic illness to support our health journey - see this article.

Why your tracker data is more valuable than you think

There’s a reason healthcare researchers are excited about patient-generated data right now. A 2025 review published in Frontiers in Public Health describes the shift AI is enabling in chronic disease care — moving healthcare “from reactive treatment to continuous, individualised health management.” That’s not describing some future technology. That’s describing what becomes possible when your existing symptom data gets a proper analysis.

The problem is that this kind of analysis has traditionally required software, statisticians, or at minimum a very switched-on specialist who has time to sit with your spreadsheet. Most of us have none of those things.

What we do have, now, is access to AI tools that can read your data, notice what you’ve missed, and explain it back to you in plain language.

A 2025 scoping review in the Journal of Medical Internet Research — examining AI applications for chronic condition self-management — found that AI has genuine potential across what researchers call the three pillars of self-management: medical tasks (like tracking and monitoring), behavioural tasks (like pacing and planning), and emotional tasks (like processing and coping). Symptom pattern analysis sits squarely in that first pillar. And it’s one of the most immediately practical things you can do.

”AI technologies supporting self-management… remain poorly understood in terms of how they actually meet patients’ needs.”

— Hwang et al., 2025, Journal of Medical Internet Research

That quote is both an acknowledgement of how early we are in this space, and a reason this series exists. Because patients are already using these tools, often without guidance. This is an attempt to offer some.

Subscribe now

What AI can actually do with your symptom data

When you paste your symptom tracker data into an AI tool like Claude or ChatGPT, you’re giving it a dataset to work with. Depending on what you’ve been tracking, it can:

• Identify patterns across time (day of week, time of month, seasonal shifts)

• Spot correlations between variables (sleep and pain, food and fatigue, activity and flare)

• Notice things you’ve normalised and stopped seeing

• Summarise weeks or months of data into a readable narrative

• Help you identify questions worth raising with your doctor

• Generate a plain-language summary you could share at an appointment

It cannot tell you why these patterns exist, and it cannot diagnose you. But it can be the thing that finally makes your data speak.

You can check out my Health Tracker Dynamic Spreadsheet in my store.

What you’ll need

• Your symptom tracker data — exported as a CSV, copied as text, or typed as a summary. The more consistent your tracking, the better the analysis.

• Access to Claude (claude.ai) or ChatGPT. Either works for this purpose.

• About 15–20 minutes, ideally on a low-symptom day.

If you would like extra guidance, I’ve got a 15-page workbook that takes you through this all step by step, with screen shots and additional detail (far too much for an article on here). You can purchase that here.

The simple prompt: try this today

Copy this prompt and paste it into Claude or ChatGPT, followed by your data:

”Here is my symptom tracker data from the past [X weeks/months]. I live with [condition/s — optional, include if comfortable]. Please analyse this data for patterns, correlations between symptoms, and any possible triggers or trends. Summarise what you notice in plain language that I can understand and share with my doctor. Flag anything that stands out as worth investigating further.”

Paste your data beneath the prompt. The more context you give — including what units you use, what your scales mean, and what conditions you’re managing — the more useful the response will be.

What to do with the output

When AI analyses your data, you’ll likely get a response covering several areas. Here’s how to use it:

Take notes on what surprises you. AI often notices things you’ve habituated to. If it flags that your worst symptom days cluster on Fridays, or that your pain scores spike in weeks following high activity, write that down.

Copy the summary for your next appointment. A plain-language pattern summary — “my fatigue appears to correlate with poor sleep three days prior, and my worst weeks follow periods of higher activity” — is far easier to communicate to a doctor than a spreadsheet.

Ask follow-up questions. If something in the AI’s response is unclear or intriguing, keep the conversation going. “Can you explain what you mean by a correlation here?” or “What kinds of questions could I ask my rheumatologist about this pattern?”

Verify anything medical. If the AI uses medical terminology or suggests a possible mechanism for a pattern, research it further and bring it to your care team — don’t act on it alone.

A note from the research

Researchers studying AI in chronic disease care are increasingly noting that the technology is most valuable not when it replaces clinical care, but when it extends patients’ ability to engage meaningfully with their own health between appointments. A 2024 study published in Learning Health Systems found that patients using ChatGPT for health research reported saving time, accessing information more readily, and feeling more capable of making informed decisions about their own care.

That’s what this is. A tool for the hours between appointments. A way to make the data you’re already collecting actually work for you.

Coming up next

In Article 2, we’ll look at using AI to research your symptoms and conditions — how to ask good questions, how to evaluate what you get back, and how to avoid the overwhelm that usually comes with Googling at midnight.

Share

References

• Hwang, M., Zheng, Y., Cho, Y., & Jiang, Y. (2025). AI Applications for Chronic Condition Self-Management: Scoping Review. Journal of Medical Internet Research. https://doi.org/10.2196/59632

• Al-Anezi, F.M. (2024). Exploring the use of ChatGPT as a virtual health coach for chronic disease management. Learning Health Systems, 8(3). https://doi.org/10.1002/lrh2.10406

• ProVention Health Foundation. (2025). How Artificial Intelligence Is Transforming Early Diagnosis and Chronic Illness Care in 2025. https://www.proventionhealth.org/how-artificial-intelligence-is-transforming-early-diagnosis-and-chronic-illness-care-in-2025/

Melissa Reynolds is a patient advocate, author, and chronic illness community builder at Chronically Well / Going Our Own Pace. She is not a medical professional. Nothing in this series constitutes medical advice.

Want the workbook?

If you would like extra guidance, I’ve got a 15-page workbook that takes you through this all step by step, with screen shots and additional detail (far too much for an article on here). You can purchase that here.

I understand that the concept of AI can be a minefield, I explored whether we should be using it in the article below. Ultimately, I cannot answer for you. I am choosing to use AI mindfully and to support my health journey.

Symptom tracking changed that. Not immediately, and not dramatically — but over time it gave me something I hadn’t had before: a way to see the patterns I was too close to notice on my own.

What symptom tracking actually gave me

The most significant thing wasn’t the data itself. It was what the data revealed. I started to see that certain things consistently preceded a flare — not just obvious triggers, but subtler ones. I could see how long recovery actually took, which was usually longer than I’d been telling myself. I could see what was genuinely helping versus what I’d assumed was helping because I wanted it to be.

That last one mattered more than I expected. When you’re managing a complex condition, you’re investing time and energy and hope into different strategies. Tracking let me see which investments were paying off.

It also changed how I talked to healthcare providers. Arriving with concrete patterns rather than general descriptions shifted the quality of those conversations significantly. Invisible, variable conditions are hard to communicate. Data helps.

What’s worth tracking

You don’t need to track everything. You need to track what’s most relevant to your condition and what you can sustain consistently — because consistency matters far more than comprehensiveness.

For most people with chronic pain or fatigue, the most useful things to track are pain intensity and location, energy levels, sleep quality, brain fog, stress, activity levels, and anything you’re taking or doing as an intervention.

A simple rating system, even just one to ten for your key symptoms, is enough to start seeing trends over time.

How Symptom Tracking Fits in Symptom Management

Symptom tracking keeps me honest.

As someone who’s lived with chronic symptoms for a very long time, I noticed that I had slipped into a bit of denial about how bad things were. I needed to objectively set a plan for managing pain so it wasn’t escalating, bringing in the nervous system and causing a system wide collapse every time.

That’s how I set up my If This Then That plan. The plan where I honestly track my symptoms - once or twice a day - and then act upon that data.

If my pain is X/10 - then I follow the plan.

Often, I’m tempted to rate it as 3.5 to avoid “moderate” pain. But if I look back and realise I’ve been re-heating my heat pack constantly, massaging, stretching, unable to do certain things - then I’ve passed that point. I’ve likely headed towards 5/10 territory and my nervous system is about to join the party (if it hasn’t already).

This has been huge in managing my symptoms.

The other thing that made a big difference in how I used it

Tracking symptoms is only useful if you review what you’ve recorded. A weekly review — even ten minutes — is where the insights actually emerge. Looking back across a week shows you things you can’t see day to day. Monthly reviews show you things the weekly view misses.

This is also where tracking connects to proactive management. Once I understood my patterns well enough, I could see escalation coming earlier — and intervene before things reached the point where recovery took days instead of hours. That shift from reactive to proactive was one of the most meaningful changes I made in managing my condition.

How My Tracking Evolved

I started by writing notes in a little notebook. Eventually, I formulated this into a template that I copied over and over.

Once I was well enough to start spending more time on the computer, I designed one for myself. A digital one I printed on paper. Then I started offering the readers of my blog copies.

It got to a point where I had several types, for varying purposes, available in an Etsy store and in my own store.

At some point, I compiled a few symptom tracking journals so I didn’t have to keep printing out paper each week.

My Daily Health Log is a cute a5 version I created.

However, this wasn’t making the patterns as easy to see as I’d hoped. So in early 2026, I created a spreadsheet complete with a dashboard tracking patterns by month and the year. It’s available here: Spoonie’s Health Tracker: Daily Symptom Log Spreadsheet.

Where to start

If you’re new to tracking, start simpler than you think you need to. A few key symptoms are rated consistently every day. That’s it. You can add complexity once the habit is established — and once you know what you actually need to understand about your own picture.

If you’d like a ready-made structure, my symptom-tracking tools give you exactly that — designed specifically for chronic illness, with prompts and rating systems already built in. And if you want the full context for how tracking fits into a broader management approach, this is one of the chapters in my book Finding My Own Pace, which covers the complete picture of what has moved the needle for me over twenty years.

Tracking won’t fix anything on its own. But it will show you what’s worth fixing — and whether what you’re doing is actually working. That clarity, over time, is its own kind of power.

If you’ve already been tracking for a little while, you may be interested in how AI can support your symptom tracking in this workbook/guide I created.

Subscribe now

Resources that might support you:

Daily Health Log Symptom Spreadsheet

Your free If This Then That Card

Finding My Own Pace book

It Started When I Was a Teenager

My first symptoms came on at 14. A burning sensation in the nerves of my arms — they called it tendinitis, gave me a splint, and sent me on my way. By 17, I had burning shoulders by the end of every day. I was put through a series of tests, and then, because the pain came and went and changed in intensity and frequency, the conclusion was that I had made it up. I left with anti-inflammatory pain meds, wrist splints, and no answers.

In my last year of university, I got very sick — severely, suddenly ill. It took a long time to recover, but the fatigue and other symptoms never fully went away. Looking back, it was almost certainly post-viral fatigue syndrome. Something changed in my body during that illness, and whatever it changed, it never changed back.

By my early 20s, I was trying to work full-time while in tremendous pain, barely sleeping, and exhausted in a way that went beyond tired. A young, otherwise healthy woman with a good lifestyle walking into doctors’ offices saying: I don’t sleep, I’m in constant pain, I am completely exhausted. And the response, over and over again, was: I don’t know. I was put on amitriptyline and left there.

The Diagnoses That Came — and the Ones That Were Hidden

At some point I received a diagnosis of fibromyalgia. Later, when I finally accessed my own health records, I discovered that chronic fatigue syndrome had also been added — but no one had ever told me. I had been living with it on my file, quietly, without anyone thinking it worth mentioning.

At 36, after years of going back and forth describing increasingly debilitating periods, I was finally diagnosed with endometriosis. One doctor had actually said to me, in response to my descriptions of pain: “People with fibro have bad periods.” That was it. That was the level of curiosity being applied to my situation.

By the time the endometriosis was properly acknowledged, I had lost so much weight I looked frail. My blood tests were worsening every time they ran them. And because the public system wasn’t going to move fast enough, my family and I had to pay out of pocket for the surgery. That’s how broken things are here.

During my recovery from that operation, my GP and I began exploring hypermobility spectrum disorder — and it fit in ways fibromyalgia never quite had. With that knowledge, I was able to make practical changes: becoming more mindful of things like my SI joints, starting with a chiropractor who treated me gently. Slowly, over two years, I was improving.

Subscribe now

Then My Gut Collapsed

In October, something new happened. A severe gut episode landed me in urgent care — pain so bad I wasn’t sure whether to call an ambulance. They wrote it off as gastritis. Presumably a one-off. But the flare-ups kept coming.

Just before Christmas, a doctor I hadn’t seen before asked a question that apparently no one had thought to ask before: Why are you having all of these symptoms and you’ve never even had a stool test? I didn’t have an answer for her. She sent me for one.

My calprotectin — a marker that measures inflammation localised to the gut, which should be under 50 — came back at 3,100. I was called and told to go to hospital immediately.

What followed was months of testing: colonoscopies, gastroscopy, an MRI with contrast, a pill cam to visualise the small bowel. Most things came back visually clear. Then the biopsies came back showing chronic inactive gastritis — actual damage in my stomach — and I tested negative for H. pylori. When gastritis isn’t caused by medication use or H. pylori, it’s often autoimmune.

Where Things Stand Now

All of the mainstream gut diagnoses seem to have been ruled out. Crohn’s, coeliac, ulcerative colitis appear unlikely. Mast cell activation syndrome was considered, but I don’t present typically for it and a trial of antihistamines made no difference. What keeps surfacing, the more we dig, is the possibility of something immune — either an insufficiency or a dysregulation — that has been quietly operating in the background and causing systemic effects for a very long time.

And the more I look at the picture, the more it points back to that illness at university. The way long COVID is understood to work — disrupting and dysregulating the immune system, producing a cascade of systemic symptoms — is probably very similar to what happened to me. Except it happened 20 years ago, and no one was looking for it.

I use AI to help me make sense of the results as they come in. I drop my reports into a conversation I’ve been building with Claude, and it translates them into plain language and helps me understand the range of what they might mean. When things were at their worst, having that — having the ability to say okay, here is everything, give me the likelihood of what this could be — genuinely helped my nervous system settle enough to think clearly. It’s also helped me go into appointments with targeted, specific questions rather than trying to manage the overwhelm of it all in real time.

The Part That Makes Me Angry

Every single improvement I have ever made has come from my own push. I researched and asked for low-dose naltrexone myself. I pushed for the endometriosis investigation. I found and funded the private specialist. I researched hypermobility spectrum disorder and brought it to my GP, who went through the diagnostic criteria carefully with me, agreed it was right — and then apologised, because there was nothing more she could do. Rheumatology won’t take hypermobile patients because there’s no neat medication to prescribe. There is no path forward within the system.

I was scared to push too hard for myself for years. Scared of being labelled a malingerer. Scared that if I changed doctors, the new one might not continue the low-dose naltrexone. And the cruelest irony of all: I wasn’t well enough to fight harder. I didn’t have the cognitive or physical resources to advocate for myself the way I needed to. The fog and the fatigue and the pain took that from me too.

New Zealand’s public health system is genuinely not equipped for complex, multi-system chronic illness. Overseas, long COVID clinics have created pathways for people whose conditions don’t fit a single specialist’s remit. Here, each doctor treats their own organ and nobody coordinates the whole picture. Our pain clinic system, in my experience and from what I’ve heard from others, leans hard into dismissal — sensitivity, sleep hygiene, meditation, gentle exercise, and that’s your lot.

That is not enough. Not for someone with real, measurable, ongoing physiological processes happening in their body.

What I Know Now

I am 40. I am only now well enough — cognitively, energetically — to begin pursuing the things I always wanted to do. I had to give up plans for a master’s degree in English literature because I was too sick to study and work at the same time. Every year I have improved has come at a cost, and every year there has still been a ceiling I couldn’t break through.

But I have made the best of it. I know that now, and I can say it without resentment. Everything I’ve learned — about chronic illness, about managing a body that doesn’t cooperate, about navigating a system that doesn’t see you — is here, in this platform, on my YouTube channel, in my books. In case it helps you.

Because I know I am not the only one. And I know that when the doctors don’t understand, you don’t understand either — which means you can’t even offer yourself the compassion you deserve.

I see my gastroenterologist next week. I still don’t know what comes after that. But at least now someone is asking the right questions. Finally.

If any of this resonates with you, I’d love to hear from you in the comments. And if you’re somewhere in the middle of your own version of this — I see you.

Leave a comment

Share

Subscribe now

A Bit About Where I’m Coming From

I’ve lived with chronic symptoms my entire adult life — since I was a teenager. For a long time, I just... endured. In the last few years, though, I’ve made significant inroads in my quality of life. My average pain levels ten years ago sat around a seven out of ten. Now they’re around three or four — with flares, yes, but that’s a very different baseline to live from.

A big part of that shift has come from taking a systematic approach to management. I talk a lot about whole-of-life management plans: getting properly diagnosed, addressing other conditions (endometriosis was a major one for me), prioritising sleep, pacing energy wisely — especially as women, who carry enormous caregiving expectations alongside everything else. These are all huge topics in their own right.

But one of the most immediately actionable things I’ve done — something you can start on today — is building a symptom management plan. Specifically, what I call an “if this, then that” pain management plan.

The Five-Out-of-Ten Problem

Here’s something that changed everything for me. A few years back, I asked my physio: at what point on the pain scale does the nervous system get involved and start turning things into a runaway train?

She didn’t hesitate. Five out of ten.

That hit me hard, because at that point in my life, my pain was rarely below five. And I had no proactive system — just a collection of coping mechanisms I’d reach for once things were already bad.

The problem is, none of those tools work well once you’re on a runaway train. Once pain hits five or six out of ten, you’re not just dealing with pain anymore. You’re dealing with a nervous system responding to that pain, which makes sleep harder, which increases fatigue, which increases pain — a cycle that feeds itself. At that point, even your best tools struggle to land.

The key is catching it before it escalates. And for that, you need a plan that’s already decided for you.

The “If This, Then That” Plan

The concept is simple. You map your pain levels to specific responses, in advance, so you’re not making decisions when you’re already struggling. When pain hits a certain number, the next step is already chosen.

Here’s a rough version of what mine looks like, just to illustrate:

• Pain at 3/10 → heat pack

• Pain at 4/10 → paracetamol

• Pain at 5/10 → non-medicated pain spray

• Pain at 6/10 → muscle relaxant

• Pain at 7/10 → everything on board, and I’m going to bed with a yoga nidra regardless of what’s on my schedule

Your version will look completely different depending on your type of pain, what tools you have available, what you’re prescribed, and your overall context. I can’t hand you a finished plan — but I can tell you how to build one.

Start by noticing what actually helps at different levels. There are things that work well at a three or four — stretching, heat, holistic whole-of-life measures — that stop being as effective once you cross into moderate pain. At four, you’re approaching the territory you don’t want to enter, so that’s when it’s time to get more serious. At five, you need to decide what “serious” means for you medically. And so on.

One thing worth knowing: some tools are mutually exclusive. I can’t use my heat pad on top of the pain spray, for example. Building the plan in advance means I’ve already thought through those trade-offs — I’m not trying to make those decisions mid-flare.

Why the Automation Is the Point

The reason this plan has worked isn’t just that it’s a good plan. It’s that it removes the decision-making in the moment.

Left to my own devices, I will let things slide. I’ll tell myself it’s not so bad or I’ll be okay. I’ll get to lunchtime and realise I’ve been quietly managing pain the entire morning, half my day quietly lost to it. I’ve caught myself recording symptoms as “3.8” just to avoid ticking over into four — because four means I have to do something, and doing something feels like admitting it.

When you’ve lived with this for a long time, all of these little negotiations get exhausting. The if-this-then-that plan cuts through them. The decision is already made. I just follow it.

Since implementing this, I rarely push past five out of ten anymore. And on the occasions I do go into a flare, those flares are easier to manage and shorter-lived. That’s not a small thing. That’s quality of life.

Where to Start

If you want to build your own plan, I have a free download available in my Payhip store and some examples over on my Substack. If you want the full tutorial — covering pain management ideas, flare protocols, daily symptom tracking worksheets, and the complete if-this-then-that template with instructions — that’s available for purchase as well.

But more than anything: I’d love to know if you’ve already implemented something like this. Has a strategic pain management plan made a difference for you? Drop your experience and any tips in the comments — I read them all.

Leave a comment

Symptom Management Course

More helpful resources:

I opened Claude and pasted in everything I had.

What came back wasn’t a diagnosis. It wasn’t a prediction. It was a plain-language explanation of what the data showed, what the possible mechanisms were, what each finding might mean in the context of the others, and a calm walk-through of the range of outcomes my results were pointing toward. I spent the next hour asking follow-up questions. By the end of it I understood what was happening in my body well enough to stop worrying.

I want to be precise about what that was and what it wasn’t. AI didn’t give me answers. It helped me demystify a situation that had become frightening partly because I couldn’t read the data I was sitting with. It translated complexity into something I could hold. And for that specific purpose, at that specific moment, it was genuinely useful.

That experience is what prompted me to start thinking more carefully about AI and chronic illness — and eventually to write this piece.

Who I am, and why I’m writing this

I’m a patient advocate and chronic illness patient. I’ve been navigating my own health journey for over a decade, and I’ve spent much of that time building a community around the lived experience of chronic illness. I’m not a doctor or researcher, and nothing I write here should be taken as medical advice.

I’m also, for whatever it’s worth, highly proficient with technology. I work across multiple digital platforms, I understand how these tools are built at a conceptual level, and I’m not someone who is easily misled by confident-sounding output. I mention this not to put distance between myself and anyone less familiar with technology, but because it’s relevant context for what follows. My experience with AI is not a universal one, and the risks I navigated carefully may present differently for someone in a different cognitive or emotional state.

I’m raising this question publicly because I believe patients deserve a thoughtful, honest conversation about it — one that takes both the potential and the risks seriously, and that doesn’t assume people will simply stop using these tools because someone told them to.

Subscribe now

The research case

The evidence base for AI in chronic illness care is growing, and it’s more substantive than the general conversation tends to acknowledge. I provide some information here, but there is also a list of references below for you to read if/when you would like to.

A 2025 scoping review published in the Journal of Medical Internet Research examined 66 studies to understand how AI is being applied to chronic condition self-management. Researchers mapped three areas where AI has genuine potential: medical self-management tasks like monitoring and tracking, behavioural tasks like pacing and routine-building, and emotional tasks like processing and coping. The review also noted that how these technologies meet patients’ actual day-to-day needs remains poorly understood — which is a telling gap given how widely patients are already using them.

A 2025 narrative review in Frontiers in Public Health described a meaningful shift that AI makes possible: moving chronic disease management from reactive treatment toward continuous, individualised support. For those of us who live in the long spaces between appointments — managing, monitoring, and making decisions largely alone — that shift is not abstract. It describes something that most of us need and very few of us have access to.

A 2025 systematic review of conversational AI agents for chronic disease self-management found that these tools add adaptive feedback, personalisation, real-time monitoring, and continuity of care between clinical visits. The phrase that stays with me is continuity of care between visits. For complex, long-term conditions, that continuity is usually us. We are the ones holding the thread. AI doesn’t change that — but it can, when used carefully, reduce the cognitive cost of holding it.

The concerns

I am not going to tell you the concerns about AI are uninformed. Several of them are grounded in real evidence, and they matter.

Misinformation and hallucination. This is the most clinically significant risk. AI tools can hallucinate — generating false information that sounds entirely credible. Research shows that AI chatbots can produce false medical information in a significant proportion of simulated cases without safeguards, and that they are designed to sound definitive rather than uncertain. A 2026 BMJ Open audit found that nearly half of AI chatbot health answers were problematic. A documented case study described a patient who experienced a life-threatening delay in care after acting on an erroneous AI diagnosis.

This is not a theoretical risk. It is documented, peer-reviewed, and serious.

Mental health risks. Researchers and clinicians have raised concerns about AI chatbots in mental health contexts — including validating harmful ideation, encouraging destructive behaviours, and influencing vulnerable users without adequate safeguards. Some AI companion apps have been implicated in serious incidents. These concerns are legitimate and the guardrails in most consumer AI tools are insufficient.

Environmental cost. Research published in Patterns in 2025 found that the carbon footprint of AI systems could be comparable to that of New York City, and the water footprint could reach hundreds of billions of litres annually — with major tech companies not currently disclosing AI-specific environmental data. Anyone with genuine concern for environmental justice has grounds to be troubled by the scale of AI’s resource consumption. I sit with this one, and I don’t dismiss it.

Where I’ve landed — for now

AI is already embedded in the lives of most people managing chronic illness. It is in our phones, our search results, and increasingly in our healthcare systems — often without our knowledge.

The question is no longer whether patients will use AI to manage their health. Many already are. The more useful question is whether they are doing so with any real understanding of the risks, the limits, and the conditions under which these tools are and aren’t appropriate.

In my own case — technically confident, in possession of complex data, in a non-emergency situation, with no intent to act on AI output without medical follow-up — the tools served a genuine purpose. They reduced fear by increasing comprehension. They helped me prepare better questions. They did not replace my care team; they improved my capacity to work with them.

But I’m aware that my circumstances are not everyone’s circumstances. The same tool that helped me navigate a frightening waiting period could, in different hands, delay a necessary call to a doctor. The difference is not in the tool — it’s in how it’s used, and what a person understands about its limits before they start.

That’s what I want to put my energy into: not arguing about whether AI should exist in healthcare, but thinking carefully about what safer, more informed use actually looks like for patients — particularly patients with chronic illness, who are often isolated, often exhausted, and often navigating more medical complexity than any system was designed to support.

I’m planning to write more about this. Not a prescriptive guide, not a series of how-to instructions, but honest, careful thinking about specific use cases — informed by the research, grounded in lived experience, and clear-eyed about the risks. If that’s something you’d find useful, I’d genuinely like to hear from you.

Subscribe now

A note to those with concerns

If you are troubled by AI — by its safety record, its environmental cost, its potential for misuse — I hear that, and I think many of those concerns are legitimate. You may decide these tools are not for you, and I will not try to convince you otherwise.

My own position is not that AI is straightforwardly good or that the benefits outweigh the risks for everyone. It is that people are using these tools regardless, that the guidance for patient use is thin, and that someone who cares about this community and takes the risks seriously should be in the conversation. I’m trying to be that person.

If you have thoughts on this — including pushback — I’m genuinely interested. This is a conversation worth having carefully. But let’s please remember to be kind, helpful and non-judgmental because stress helps none of us.

Leave a comment

References

• Hwang, M., Zheng, Y., Cho, Y., & Jiang, Y. (2025). AI Applications for Chronic Condition Self-Management: Scoping Review. Journal of Medical Internet Research, 27, e59632. https://doi.org/10.2196/59632

• Du, Y., Yang, P., Liu, Y., Deng, C., & Li, X. (2025). Artificial intelligence in chronic disease self-management: current applications and future directions. Frontiers in Public Health, 13, 1689911. https://doi.org/10.3389/fpubh.2025.1689911

• Peerbolte, T.F., et al. (2025). Conversational Agents Supporting Self-Management in People With a Chronic Disease: Systematic Review. Journal of Medical Internet Research. https://doi.org/10.2196/72309

• Al-Anezi, F.M. (2024). Exploring the use of ChatGPT as a virtual health coach for chronic disease management. Learning Health Systems, 8(3). https://doi.org/10.1002/lrh2.10406

• TeleDirectMD. (2026). Half of Chatbot Health Answers Were Problematic: Practical Safety Rules for Patients. https://teledirectmd.com/health-guides/ai-chatbot-medical-information-safety/

• ECRI. (2026). Misuse of AI Chatbots in Health Care Tops 2026 Health Tech Hazard Report. https://healthjournalism.org/blog/2026/02/misuse-of-ai-chatbots-in-health-care-tops-2026-health-tech-hazard-report/

• De Vries-Gao, A. (2025). The carbon and water footprints of data centers and what this could mean for artificial intelligence. Patterns / Cell Press. https://doi.org/10.1016/j.patter.2025.101222

Share

Other articles

I’ve tried a lot of things. Most of them helped a little, temporarily, around the edges. A handful changed the trajectory. These are those.

First: what I mean by “helped”

I’m not pain-free. I’m not cured. I pace every single day. What has changed is that I function significantly better than I did, my baseline has shifted upward, and the things that used to floor me no longer do — or recover faster when they do. That’s the frame I’m using here. Progress, not resolution.

Subscribe now

1. Pacing

Pacing is the foundation everything else rests on, and it’s the one that took the longest to accept because it looks like doing less. It isn’t. It’s doing the right amount — consistently — rather than pushing through and crashing, which in a sensitised nervous system triggers a pain and fatigue cycle that can take days to recover from.

For hypermobility conditions in particular, the muscles are already running at a higher metabolic cost than most people’s — they’re doing the work of ligaments as well as their own job. Overloading them doesn’t just cause temporary tiredness. It drives the guarding patterns deeper and feeds central sensitisation. Pacing is the intervention that prevents that cycle from compounding.

It took me years to pace well. I still don’t do it perfectly. But building my days around energy management rather than willpower has been one of the most meaningful practical shifts I’ve made.

2. Yoga Nidra

I’ve been doing yoga Nidra daily for ten years. For most of that time I couldn’t have told you exactly why it helped — only that something shifted when I did it. Having recently dug into the neuroscience, I now understand what it’s actually been doing.

Yoga Nidra guides the brain into the hypnagogic state — the threshold between waking and sleep — where the nervous system accepts recalibration it resists while fully awake. Over thousands of repetitions across years, this shifts the baseline threat threshold of the nervous system through genuine neuroplasticity. It reduces chronic cortisol load, increases vagal tone, and allows muscle guarding to release in ways that aren’t accessible through ordinary relaxation.

For those of us with central sensitisation, this isn’t a complementary nicety. It’s working directly on the mechanism that maintains the condition. The research on cortisol reduction and autonomic rebalancing through yoga Nidra is solid. The neuroplasticity research on long-term meditators — showing structural brain changes measurable on MRI — is robust.

It took years to show its full effect, and I think that’s why many people give up on it. I wasn’t failing to improve in the early years. I was depositing into a nervous system with an enormous deficit. Daily practice was likely preventing deterioration long before it produced visible change.

3. Chiropractic care using the activator method

I started seeing my chiropractor about two and a half years ago, shortly after a hysterectomy and endometriosis surgery. She uses the activator method — no high-thrust manipulation, just a small instrument delivering a very rapid, low-force impulse. I chose this partly because my nervous system was so sensitised that cranial work alone would leave me unwell for days at the start. She had to begin very slowly.

The mechanism behind the activator is more interesting than it looks. The impulse fires mechanoreceptors in the joint — sending a clear position signal to the spinal cord and brain. For a hypermobile nervous system receiving poor proprioceptive data, this is essentially a reset. The chronic muscle guarding maintained around that joint can release, even partially, because the threat signal has been updated with accurate information.

My neck, which had been the most debilitating area — intense tightness, headaches, restricted blood flow, inability to turn in one direction — has responded dramatically. Two and a half years in, I tolerate treatment well that initially made me unwell for days. The underlying nervous system architecture had to change first. The yoga Nidra built that ground. The chiropractic had somewhere to land.

4. Diagnosing and treating other conditions properly

This one is less visible but possibly the highest leverage item on the list.

For years, conditions were managed in isolation — or not managed at all because they hadn’t been identified. The endometriosis wasn’t properly diagnosed and treated until surgery two and a half years ago. The POTS sits on my conditions list but hasn’t had formal assessment or active management beyond what I’ve worked out myself. Gut involvement — which is directly connected to both hypermobility and autonomic dysfunction — has been an ongoing diagnostic process.

Each unmanaged condition is a source of ongoing inflammatory load, sympathetic drive, or metabolic cost that feeds back into everything else. The surgery that removed the endometriosis almost certainly reduced the background noise my nervous system was working against, which is part of why everything else started working better around the same time. Treating the whole picture, not just the loudest symptom, matters.

5. Low dose Naltrexone

I’ve been on LDN for nine years. I heard about it through another patient advocate, not through the medical system — which tells you something about how underused it is.

The most significant thing it did early on was stabilise my immune system. Before starting, I caught everything going. Constant mouth ulcers, constant cold sores. Those almost entirely disappeared. Over the longer arc, I believe it’s been quietly holding a lot of things stable — though it isn’t a cure, and it hasn’t stopped other things from developing or needing attention.

Starting LDN requires patience. It took about six months before I knew for certain it was working. I started at 0.5mg, titrated slowly, and settled at 4mg — I’ve never tolerated higher than that. When I’ve accidentally underdosed or stopped before a procedure, the first thing that returns is that deep 4am morning stiffness. My body makes the connection clear.

It doesn’t help everyone. I’ve never claimed it does. But for chronic pain and fatigue conditions, the cost-benefit calculation is worth examining. The side effect profile is minimal compared to most alternatives, and long-term tolerability is high. If you want the full detail on how it works and what starting out actually looks like practically, I’ve written an ebook that covers all of it.

6. Being Proactive on Symptoms

Everything on this list works better when it’s part of a system rather than a reaction. That’s the thread connecting all of it — and the place where I had to take active control rather than waiting for things to either resolve or escalate.

The first piece was tracking. For a long time I was living inside my symptoms without being able to see the patterns in them. Tracking changed that. It told me what was helping and what wasn’t, what preceded a flare and how long recovery actually took, and what my real baseline was versus what I’d been normalising as baseline. That data became the foundation for everything else — you can’t manage what you can’t see.

The second piece was understanding the escalation dynamic. In a sensitised nervous system, pain that isn’t addressed early doesn’t just stay the same — it feeds sympathetic activation, which amplifies the pain signal, which drives more guarding, which makes everything harder to come back from. Waiting to see if things settled was often the worst option available. Getting on top of symptoms early, before they reached nervous system overactivation territory, became a core principle.

That led me to building what I call my If This Then That Pain Management Plan — a proactive, tiered response map for symptoms. Rather than making decisions in the middle of a flare when cognitive load is high and the temptation to push through is strongest, I’d worked out in advance what each level of symptoms called for, and I followed the plan. It removed the decision fatigue and the self-negotiation that had cost me so many recovery days.

Together these things — tracking, early intervention, a clear plan — form the connective tissue between everything else on this list. Each treatment and strategy works better because the daily management isn’t left to chance.

7. A generally healthy lifestyle — and what that actually means with chronic illness

This last one is the hardest to write about without it sounding either obvious or preachy, so I’ll be specific about what it means in my context.

It means sleep as a non-negotiable, not a variable I sacrifice when life gets busy — because sleep is when the nervous system consolidates the recalibration that everything else is working toward. It means anti-inflammatory eating without rigidity, because chronic illness doesn’t need the additional nervous system load of dietary perfectionism. It means gentle, consistent movement rather than either sedentary behaviour or bursts of overexertion — both of which are worse for a dysregulated autonomic nervous system than mindful, paced activity.

It means treating the body as a system that is doing its best with a structural disadvantage, rather than one that needs to be pushed through or managed into submission. That shift in framing — from fighting the body to working with it — has been as important as any single intervention.

What I’d tell someone at the beginning

None of these things worked in isolation. The yoga Nidra built the nervous system ground that allowed the chiropractic to work. The surgery reduced the inflammatory load that was making everything harder. The LDN stabilised the immune dysregulation underneath. The pacing prevented the crashes that would have undone progress between sessions. Being proactive reduced the load on every system.

It’s a system, not a list. And it took twenty years, a reclassified diagnosis, major surgery, and a lot of patient piecing together to build it. I’m sharing it because someone else shouldn’t need that long to find the starting points.

My book Finding My Own Pace shares the story, the treatments, the learning all in one place and you can get that now.

Here’s some additional articles that may help:

I have hypermobility spectrum disorder, POTS, and a history of central sensitisation severe enough that chiropractic cranial work would leave me unwell for days when I first started treatment. My nervous system was, for a long time, running a permanent high-alert state. Yoga Nidra is a significant part of why that has changed.

What yoga Nidra actually is, neurologically

Most people think of yoga Nidra as a deeply relaxing guided meditation. That’s not wrong, but it undersells what’s actually happening in the brain. Yoga Nidra deliberately guides the mind into the hypnagogic state1 — the threshold between waking and sleep. EEG studies show that experienced practitioners produce increased theta wave activity during practice, the same brain state that occurs in the moments before sleep.

This is neurologically distinct from ordinary relaxation. In the hypnagogic state, the brain is simultaneously receptive to new input and disengaged from the defensive filtering it applies during normal waking consciousness. The nervous system accepts recalibration here that it actively resists while fully awake. Every session is working with that window.

What it has done to my central sensitisation

Central sensitisation — where the nervous system turns up the gain on all incoming signals and keeps its alarm threshold set too low — is self-reinforcing. The neural pathways that maintain it are strengthened by repetition. Changing them requires sustained, repeated input that signals safety, delivered consistently enough to actually update the underlying architecture.

This is what ten years of daily practice provides. Each session sends a prolonged signal to the threat-detection systems — the amygdala, the hypothalamus, the structures that decide how dangerous the world currently is — that the present moment is safe. Over thousands of repetitions, this doesn’t just produce temporary calm. It shifts the baseline threat threshold through neuroplasticity.

It took years to show full effect, and I think this is why many people give up on the practice before it has time to work. I wasn’t failing to improve in the early years — I was depositing into a nervous system with an enormous accumulated deficit. Twenty years of chronic pain and sympathetic overdrive are not reversed quickly. The practice was likely preventing further deterioration long before it started producing visible change.

What it has done to my autonomic nervous system

For those of us with POTS or autonomic dysfunction, this is where the practice becomes particularly significant.

Yoga Nidra activates the parasympathetic nervous system2 through several pathways at once. The slow diaphragmatic breathing that naturally accompanies practice stimulates the vagus nerve directly — each slow exhale produces vagal firing that lowers heart rate and shifts the ANS toward parasympathetic dominance. The systematic body scan rotations build interoceptive awareness, the brain’s ability to accurately read internal body signals, which is frequently disrupted in both chronic pain and dysautonomia. And the hypnagogic threshold itself triggers the brain’s sleep-initiation parasympathetic cascade — accessing the restorative neurochemistry of sleep onset without actually losing consciousness.

Over years of daily practice, this increases baseline vagal tone measurably. For POTS, that matters because vagal tone is part of what determines how well the ANS can make rapid compensatory adjustments. The structural vascular problem doesn’t disappear, but the nervous system’s capacity to compensate for it improves.

What it has done to my muscle guarding

In HSD, muscles are chronically tight because the brain is actively instructing them to be — compensating for joints it can’t trust. This guarding is maintained by the nervous system’s threat state. It’s why heat and massage give temporary relief but the tension reliably returns. The guarding is being actively maintained, not passively present.

In the theta state of yoga Nidra, the motor neurons that regulate resting muscle tone receive less sympathetic drive. Muscles can release in ways they genuinely cannot during normal waking consciousness, even during deliberate relaxation attempts. This is why, even now, I enjoy the feeling after my practice almost as much as the practice itself. There’s an ease I don’t know at other times.

With daily practice over years, this creates periods of genuine release that gradually extend their influence into waking hours — not through willpower, but through accumulated neurological change.

This is also, I now understand, why my body eventually became able to accept chiropractic treatment that initially destabilised it severely. The yoga nidra was incrementally reducing my nervous system’s baseline defensiveness. The chiropractic corrections had a more receptive system to land in because of what the meditation had already built.

Subscribe now

What it has likely done to my stress hormone profile

Chronic sympathetic activation maintains elevated cortisol over time. That chronic cortisol load drives systemic inflammation, disrupts gut motility, impairs sleep, and feeds central sensitisation — all things that have been significant in my picture. Research on yoga Nidra specifically shows measurable reductions in cortisol and improvements in the cortisol awakening response, the healthy morning cortisol spike that gives energy and then tapers through the day.3

For someone with my history — systemic inflammation from endometriosis, gut vulnerability, central sensitisation — a meaningful reduction in chronic cortisol load over years connects to improvements that can seem unrelated on the surface. The threads run further than they appear.

Why ten years specifically matters

Research on meditation-based neuroplasticity shows that structural brain changes — measurable on MRI — require sustained long-term practice. Grey matter changes in the regions that regulate pain perception and interoception are documented in long-term meditators4. The prefrontal cortex, which modulates the amygdala’s threat responses, shows increased thickness with sustained practice.

These are not fragile functional adaptations. Ten years of daily practice means they are embedded. This is part of why my nervous system can now tolerate input that would have floored it two years ago. The underlying architecture has genuinely changed.

The thing I want people to understand

Yoga Nidra is one of the very few interventions that works directly on the threat calibration system — not managing symptoms downstream of it, but gradually resetting the baseline from which the entire system operates. For those of us with hypermobility conditions, chronic pain, or dysautonomia, that baseline is often the real problem. Everything else — every other treatment, every other strategy — has more to work with when the baseline shifts.

I didn’t see the full picture while I was in it. I just kept showing up for the practice because it gave me a kind of rest I never got any other way. Over time, it became one of my most important tools. Something I can self-administer whenever I need. Which is its own kind of benefit.

Try your own Yoga Nidra free here

Or dive into my 21 day rest habit toolkit here

If you’re new here, I’m Melissa. I started out sharing my journey with what we thought was fibromyalgia, but it turned out to be many diagnoses — and not that one. I’ve been sharing my journey for a long time because I want you to know you are not alone, and because anything that helps me, I want to pass on to you.

Lately I’ve been thinking a lot about hobbies — specifically accessible hobbies, and how we can make them work for us. I’ve also been thinking about being offline more. It’s so easy to fill all our at-home, low-energy time with scrolling, and while connection online is genuinely valuable when you’re housebound, I feel a real pull toward more offline living.

Before I get into the list, I want to say something important: hobbies are kind of new to me. I got sick very young, and for a long time I told myself I didn’t deserve to have hobbies. I can’t work full-time, I can’t do a full load of things — so why should I get to do something fun?

The flaw in that thinking, of course, is that we all deserve fun and joy. We all deserve a fulfilling life. So here’s my roundup of low-energy, low-cost accessible hobbies — in no particular order.

Affiliate notice: Please note that some of these links are affiliate links. If you make a purchase using one of these links, I may make a small commission, at no extra cost to you.

1. Crochet

I picked up crochet at the end of last year, and it has become a genuine love. I tried knitting first — it was easier to learn cognitively, and the muscle memory came faster — but I quickly hit a wall with what I could actually make, and it started feeling slow. Crochet kept pulling me back, and now I’m genuinely addicted.

Right now I’m making granny squares. I sit in my recliner, mostly reclined, and I make one square at a time. Eventually they’ll become a cardigan. It’s the perfect activity for when your body is tired but your brain is still saying let’s DO something — you can produce and create without overdoing it. (Though I will say: I still have to pace. I spent a while there upsetting my neck again by sitting too long and looking down, especially in the beginning when you’re still figuring out the stitches.)

The cost barrier is also very low. My local $2 shop — now more of a $2.50 shop, thanks inflation — stocks a great range of eight-ply yarn. I can make two granny squares from one ball for $2.50. My hooks came from similar places. You can absolutely get started for around $10.

A tip I’ve heard from others: op shops and hospice shops often have knitting needles and crochet hooks. Some clever people even buy woollen garments from those shops, unravel them, and use that yarn in their projects — a wonderful way to recycle.

I put a complete guide to starting crochet kit in my Accessible Hobby collection in my Amazon store. You can check that out here.

2. Knitting

I’ll mention knitting briefly since it’s a natural companion to crochet. It was actually easier for me to learn initially — simpler cognitively, faster muscle memory — and I made myself a hat (a big rectangle, sewn together and closed at the top). But I found it got complex quickly once I tried to make anything more substantial, and the finer needles were hard on my hands. Using chunkier yarn and larger needles helps with that, but it does limit what you can make. For me, crochet won out, but for others knitting might be the better fit.

3. Writing

Writing is accessible — but also, it isn’t, and I want to be honest about that.

I wouldn’t have been able to write fiction a few years ago. Cognitively, I couldn’t hold a story in my head. I would lose the threads too easily. When I started, I built in a lot of scaffolding: notes, a structure, and chapter-by-chapter outlines. Each morning, reclined in my chair, I’d write a couple of hundred words — and I had to write every day, because if I skipped a day, I’d lose the thread and spend more time reading back than moving forward.

Here’s how I made it work practically: Google Docs. I draft directly on my phone, which means I can write anywhere — in bed, in my chair, on the hockey sidelines. Accessibility comes from reducing friction.

I’ll be honest that this hobby does require you to be at a certain point in your journey, cognitively. But it is possible. If you’d like a proper breakdown of how I practically write fiction with chronic illness, let me know in the comments — I’d love to put that together for you.

Leave a comment

Subscribe now

4. Reading

Reading is something I’ve done throughout my illness, except during my worst periods. When I was very unwell, I couldn’t read at all — the only thing I could manage was listening to audiobooks I already knew well, like Pride and Prejudice. I still return to that in a flare.

As I got better, I read more and more — reclaiming lost time. For a while I was reading 100 books a year. Last year I hit 100 again; this year I’ve set my Goodreads goal at 80, and I’m trying to slow down and actually savour what I read.

Reading is one of the most accessible hobbies we have because of the formats available to us: ebooks, print, and audiobooks. You can read lying in bed, reclined in a chair, or listening through earphones in the car. There really is a format for every energy level.

I’ve got an Am Reading list in my Amazon Store Front that I update regularly.

5. Journaling

Journaling naturally connects with reading — and there are so many ways to do it that I think everyone can find an approach that fits.

Reading journals. I created my own simple reading journal because the ones I found felt like too much homework — too many questions, too literary. Mine has just one page per book: title, author, dates started and finished, genre, format, a rating, a one-line review, and then space for freewriting or doodling. Simple enough to actually do, but enough to help you remember.

One-line-a-day journals. I’ve had mine for five years. Each day has one line, with five years stacked on the same date. I can look back and read what I was doing this day in previous years — sometimes something small, like a walk with my son and something cute he said. It’s one of my favourite things I own.

Gratitude journals. Three things you’re grateful for each day, an intention, a reminder, and notes. Simple and repeatable. (Fun fact: I made my own after seeing an identical concept in a shop for $30. I figured I could do that myself — so I did.)

Morning pages / freewriting. Sitting down and writing whatever comes out, without editing yourself.

Joy journals. I’ve recently created one of these — a journal where each day you choose how you want to record your day, with prompts for different styles of journaling built in.

The benefits of these practices are well-documented, but more than that — they’re just a lovely, quiet thing to do for yourself.

There are a selection of journals in my Accessible Hobby collection in my Amazon store. You can check that out here.

6. Word Puzzles

This one depends on where you are cognitively, but it’s worth mentioning. Crosswords, word finds, Wordle, Clue Words — all portable, all low-cost, all good for your brain. I’ll be honest that crosswords are hard for me even now; reaching for the right words is still a challenge. But I love picking up a copy of Mind Food magazine when I fly (my little treat for tolerating something I genuinely hate) — the articles and the puzzles in the back keep me occupied.

If looking down at a book is difficult physically, most of these exist as apps too.

7. Art and Colouring

I’m a word person, not a visual person — it’s a limitation I keep bumping up against and I wish I could change. But there are some genuinely accessible ways to be creative visually without a lot of money or energy.

Colouring books are where I started, and honestly they’re wonderful. You can use felt pens or coloured pencils, set up a little lap tray in bed or in your chair, and just colour. No skill required, no mess, no big setup. I use Faber-Castell felts — nothing fancy, the same ones my kids use. The bonus: it’s actually a lovely thing to do with children. I’d get out a colouring book during lockdown when the kids were climbing the walls, start quietly colouring, and they’d slowly drift over and join me.

For something a bit more involved, small watercolour sets are available very cheaply — I found a little watercolour pad at Typo for $11.99 NZD. The tray-style paint sets close up neatly and don’t take up much space.

A Final Note

These are my current favourites, but I’d love to hear yours. What accessible hobby brings you joy? What are you curious about but not sure how to make work for you? Put it in the comments — you might give someone else an idea.

And if you want more detail on any of these — especially the writing one — just say the word.

We deserve joy. All of us. Don’t let anyone (including yourself) tell you otherwise.

Leave a comment

Share

First it was called fibromyalgia. Eventually it was reclassified as hypermobility spectrum disorder (HSD) — a condition where the connective tissue holding joints together is lax, and the muscles have to do that stabilising work instead.

My neck was the worst of it: intense tightness, headaches, restricted blood flow, an inability to turn my head in one direction for any length of time. My hips would sublux. Heat and pain relief gave minimal comfort at best.

Nothing touched it. Until chiropractic did. And I found it quite by accident.

Long story short: I had hysterectomy and endometriosis excision surgery mid-2023. During that surgery my sacroiliac joints were badly displaced. I was in severe pain and finding it difficult to sleep, sit and move. I begged the doctor for help, she sent me to a rheumatologist who had little interest and sent me away with “chronic back pain” on my “list of problems” (as he called them).

My doctor had requested an X-ray which was taking some time through the public system. I found that chiropractors do X-rays as part of their intake. So I booked in and went along.

The way that the chiropractor I found talked about the body, the nervous system and my situation gave me the faith to give it a go. So, I’ve seen her every 7-10 days for two years. And it’s made such a difference.

I wanted to understand why, so I dug into the mechanics. What I found made everything click.

The loop that kept me stuck

In HSD, the ligaments and joint capsules don’t send accurate signals to the brain about where the joints are. The brain’s response to that uncertainty is to brace — instructing surrounding muscles to contract and hold, essentially doing the ligaments’ job. That’s why the muscles are chronically tight. They’re not malfunctioning. They’re compensating, constantly, for joints they can’t fully trust.

This creates a self-sustaining loop: unstable joints produce poor signals, which triggers muscle guarding, which reduces circulation, which causes pain, which drives more guarding. Heat and analgesia address the output of that loop — the pain and tension — without ever touching the input. Which is why they never broke it.

Heat and analgesia address the output of that loop — the pain and tension — without ever touching the input. Which is why they never broke it.

What the activator actually does

My chiropractor uses the activator method — no high-thrust manipulation, just a small handheld instrument delivering a very rapid, low-force impulse. I chose this partly because my nervous system was so sensitised that cranial work alone would leave me unwell for days at the start of treatment. She had to begin very slowly.

The mechanism behind the activator is more interesting than it looks. The impulse is delivered in approximately 2 milliseconds 1— fast enough to trigger the mechanoreceptors in the joint without displacing it significantly. For a hypermobile person, this matters enormously. You don’t want large movement through lax joints. You want a clear, precise signal fired directly into the joint’s sensory system.

That signal travels up to the spinal cord and brain as essentially a position update — here is where this joint is. For a nervous system that has been receiving static for decades, this is a reset. The muscle guarding associated with that joint can release, even partially, because the threat signal has been updated with real information.

Why my neck responded so dramatically

The upper cervical spine has an unusually high density of mechanoreceptors2 — substantially more than the lumbar spine — because it integrates directly with the vestibular system. When those joints are chronically dysfunctional, the suboccipital muscles at the base of the skull become tight and shortened.3 Those muscles have fascial connections to the dura mater, the membrane surrounding the brain and spinal cord. This is the direct mechanical pathway behind tension headaches that feel like they originate inside the skull.

The vertebral arteries also travel through the cervical vertebrae, which explains the restricted blood flow and the one-directional limitation. And chronic upper cervical dysfunction feeds into a generally upregulated sympathetic nervous system — which kept my overall threat response elevated.

Subscribe now

The nervous system piece

Central sensitisation — where the nervous system essentially turns up the noise on all incoming signals — is strongly associated with both fibromyalgia and HSD.4 My early reaction to cranial work was a textbook example: my system read large amounts of novel sensory input as threat and responded accordingly.

The reason I can tolerate so much more now comes down to two things. First, gradual accumulated treatment — each session that didn’t cause harm slowly updated my nervous system’s threat map. Second, and I think more significantly than it might seem: ten years of daily yoga Nidra. That practice consistently activates the parasympathetic nervous system. It genuinely changes the baseline from which the nervous system responds to input. I came into chiropractic care with a nervous system that had been in training for a decade. That prepared ground matters.

The surgery connection

I started seeing my chiropractor about two and a half years ago, shortly after a hysterectomy and endometriosis surgery. I don’t think the timing is coincidental. Endometriosis generates significant systemic inflammation — prostaglandins, cytokines — that feeds central sensitisation. Removing that source may have meaningfully lowered the background noise my nervous system was working against, making it more receptive to new input rather than simply staying in defence mode.

The conditions for this to work finally aligned. I didn’t fail for twenty years. The right intervention for my specific mechanism just wasn’t in place yet.

In short, Do I Recommend Chiropractic for Everyone?

I want to be honest about what my experience does and doesn't mean for anyone else. The research on chiropractic for fibromyalgia and HSD is limited, and what exists doesn't support a broad claim that it will help.

What I can say with more confidence is that the mechanism matters — and the specific mechanism of the activator, a low-force proprioceptive reset delivered with sensitivity to a dysregulated nervous system, is well-suited to the central sensitisation picture in a way that high-force manipulation is not.

If you're in a similar situation, the question worth asking isn't "should I try chiropractic" but rather "is this practitioner working with my nervous system's specific needs, or against them?" That distinction, in my experience, is everything.

If you can find a chiropractor willing to use this technique and work with your specific needs, it might be worth considering. But it’s also worth noting the entire context of my changing health landscape for the past several years.

Nothing stands alone. My surgery, pacing, Yoga Nidra guided meditation, Low Dose Naltrexone and daily lifestyle habits all support.

Have you tried chiropractic (gentle) and has it helped?

Leave a comment

4

Castori M et al. Central sensitization as the mechanism underlying pain in joint hypermobility syndrome/Ehlers-Danlos syndrome, hypermobility type. American Journal of Medical Genetics, 2016. (PubMed PMID: 26919608)

Read my whole journey in my book:

Whether you’re still waiting for a diagnosis, unsure if the one you have is right, or stuck in a system that’s acknowledged your condition but can’t actually do anything about it — that uncertainty just sits there. People tell you to get over it, to stop thinking about it. But you can’t switch it off. It lives in your nervous system.

I know this because I’ve been living it for years.

From Fibromyalgia to Hypermobility — And Still Waiting

For a long time, I was told my chronic pain was fibromyalgia. One word. A label that never quite fit, especially as I started doing my own research and realised there were often identifiable, physiological reasons for pain. With my neck, for instance, I could feel something happening that corresponded directly to the pain — which isn’t how fibromyalgia typically works.

When I eventually came across hypermobility spectrum disorder, it was like someone turned the lights on. Every symptom, every detail — it matched. I went through the process, did the research, talked to my doctor, and she carefully worked through the criteria with me. She agreed: hypermobility spectrum disorder, with suspected EDS.

And then she apologised.

Because here in New Zealand, there’s no specialist who deals with this. In the public system, rheumatology doesn’t see people with hypermobility — there’s no pharmaceutical treatment to offer, so there’s nothing to do. That was it. End of the line. I could pay privately to see someone who knows a little bit about it, and then someone else who knows a little bit more, but whether that would meaningfully change my day-to-day? Who knows.

So that question mark just moved in and made itself at home.

Subscribe now

The Gut Chapter

On top of all of this, I’ve had significant gut issues for years. The working label was IBS — a sensitive gut, they said. And yes, I do have some sensitivities. Empty stomach, MSG, artificial sweeteners. Fine. But those were never the real problem.

The real problem was the flare-ups. And over the past few months, they got bad.

In October, I had a severe flare — pain at an eight out of ten — and ended up at urgent care. They called it gastritis and left it at that. In November, another flare, a few days long, that I managed to get on top of with a gut muscle relaxant and electrolytes. Then in December, it was the worst yet. Multiple days, completely incapacitated, my usual doctor unavailable.

I ended up seeing a telehealth doctor, and she asked a question that stopped me: how, with this long history of gut issues and a list of medications, had there been no proper testing? I didn’t have an answer for her. She sent me for a stool test measuring calprotectin — an inflammatory marker specific to the gut.

Late on a Friday night, I got the call. My calprotectin (a marker of inflammation in the gut) was sky-high. Please come to the hospital in the morning.

Two and a Half Months of Testing — And Still No Answer

That Saturday began two days in hospital: X-rays, blood tests, stool tests, monitoring. I was sent home to wait for a colonoscopy, had it on the Tuesday, and then spent weeks slowly recovering — I didn’t feel properly back to myself until the second or third week of January.

Rather than wait months in the public system, I used our insurance to see a private specialist. She was thorough. She scheduled an MRI with contrast focused on the small bowel, ordered more blood and stool tests, and we tracked the calprotectin across multiple readings. The first was sky-high. The second, very high. The third — taken weeks later (and outside of a flare) — had returned to normal.

The colonoscopy visually was clear. The MRI visually was clear. The biopsy did show something — patchy inflammation and small abscesses across several regions. But after a group discussion, the team factored in my symptoms alongside the biopsy findings and concluded the inflammation, while present, wasn’t significantly indicative of anything. The colonoscopy looked fine. The MRI looked fine. The calprotectin came down.

Their decision: watch and wait.

Two and a half months of extreme testing, stress, and worry — and we still don’t know. The current working hypothesis is that I had some kind of infection in December that drove the inflammation, which has since resolved. But that doesn’t explain October or November.

And so, the question mark remains.

What No Answer Actually Means

I want to be clear about what we do know, because it matters: there’s no significant bowel damage, no cancer, no serious unchecked disease progression. That is genuinely good news, and I’m grateful for it.

But here’s the thing no one tells you about “good news” when you have chronic illness: the absence of a catastrophic finding is not the same as an answer. It’s not the same as help.

What I actually asked for was: how do I manage these flare-ups that are derailing my life? That question is still unanswered. The medication I’ve been given helps a little, but it doesn’t fix anything. There are days I simply cannot function.

What I know from my research is that early and mild Crohn’s disease and other inflammatory bowel conditions can start exactly like this — indeterminate, catching only glimpses of themselves in testing before progressing. So either the next calprotectin reading comes back normal and we put it down to an infection and move on, or the inflammation is still there and we make a new plan.

In the meantime, I wait.

The System Isn’t Built for Us

What I keep coming back to is how common this experience is — and how little it’s acknowledged.

I hear from so many people sitting with a fibromyalgia diagnosis that was never properly investigated. People who actually have hypermobility spectrum disorder, ME/CFS, or something else entirely — but who were handed a label and sent home because there was nothing quick and treatable to offer. Doctors aren’t entirely to blame; chronic, medically complex conditions don’t fit neatly into a system built around acute, fixable problems. But that doesn’t make it okay.

The uncertainty is its own kind of illness. It lives in your nervous system. It adds to the fatigue, complicates the anxiety, and makes every symptom harder to sit with because you don’t know what it means.

What I’m Doing About It

One thing I’m actively changing is how seriously I’m documenting everything. For a long time I kept a paper log — useful for tracking personal patterns, but not something I could easily show a doctor. I’ve now moved to a proper symptom tracking spreadsheet that logs daily data and automatically calculates averages over time. I track pain, fatigue, and a couple of variable symptoms — one of which I’m now dedicating to gut specifically.

I genuinely wish I’d had this data sooner. Going into medical appointments with documented patterns changes the conversation. It’s one of the most practical tools we have for self-advocacy, and I think self-advocacy is going to be a big part of my life for the foreseeable future.

I don’t know when the next flare will come. I don’t know what it will tell us. But I know I have more tools now than I did — better understanding, insurance, and the confidence to push for answers — and that does make it different, even when the question mark is still there.

If you’re in this place too — chronic conditions, unclear diagnoses, a system that keeps sending you home without answers — I feel you. You’re not imagining it, and you’re not alone.

Leave a comment

Subscribe now

For my journey, read my new book Finding My Own Pace

Not just for journalling — though yes, absolutely that too — but for everything. Lists, plans, ideas, feelings, recipes I’ll never make. There is something about the act of writing by hand that settles me in a way that typing never quite has. A pen moving across paper feels like thinking. It feels like being present.

So when I tell you I’ve spent the last several months building a suite of digital health tracking spreadsheets — and that I genuinely love them, and that I think they might be some of the most useful things I’ve ever made — I want you to understand that this is not a small thing for me. This is a considered shift. A change of mind that took years of evidence to produce.

Let me tell you why.

The basket problem

I have hypermobility spectrum disorder, ME/CFS, endometriosis, and gut issues that spent years being labelled IBS and are now looking increasingly like IBD. I was also, at one point, diagnosed with fibromyalgia — a diagnosis that was later revised as more information emerged. That revision, by the way, took years. It took years, partly because the symptoms of these conditions overlap so significantly, and partly because I didn’t have the kind of clear, longitudinal data that might have made the picture legible sooner.

I had journals. Lots of them. Pages and pages of how I felt, what hurt, what I couldn’t do, what I tried. All of it beautifully, usefully written — and almost entirely impossible to analyse.

I also had a basket on my bedside table. You might have one too. It’s the basket where the medications live — the ones prescribed across multiple appointments, by multiple doctors, for multiple overlapping conditions. The ones where, if you’re honest, you sometimes pick one up and think: what was this one for again?

That’s not a memory failure. That’s what happens when you’re managing genuine complexity across a healthcare system that sees you in ten-minute windows and doesn’t always talk to itself.

The journals were recording everything. But they couldn’t show me the pattern.

What changed

Two things happened more or less simultaneously.

The first was that I got tired. Not the ME/CFS tired — though yes, always that — but tired in a different way. Tired of arriving at appointments and not being able to remember whether my pain had been better or worse over the last six weeks. Tired of knowing, somewhere in my body, that sleep and symptoms were connected, but not being able to point to anything concrete. Tired of the feeling that I had all this information and nowhere useful to put it.

The second was that the technology genuinely got easier. Spreadsheets used to feel like something accountants did. Something that required expertise I didn’t have. That’s not really true anymore — and it hasn’t been for a while — but it took me some time to fully believe it. Google Sheets, Excel on a tablet, colour coding that updates automatically as you type. It’s accessible in a way it wasn’t ten years ago, even five.

And then there was this: I realised that what I actually needed wasn’t more recording. I was already recording. What I needed was pattern recognition. And patterns require structure. They require consistency. They require being able to look at twelve months of data side by side and see, with your actual eyes, that September is always harder. That your pain scores go up when your sleep goes below six hours. That the weeks after a medical appointment — the exhausting, effortful, cognitively expensive event of a medical appointment — reliably cost you two to three days of recovery.

A journal can hold that information. A spreadsheet can show it to you.

What I built

I ended up creating three tools. I’ll describe them briefly here, because I think the why behind each one matters as much as the what.

The Spoonie’s Health Tracker came first. It’s a daily tracking spreadsheet — sleep, pain, fatigue, mood, steps, rest, and two symptom columns you name yourself (mine are currently brain fog and gut symptoms). Twelve monthly tabs, one annual dashboard. The dashboard shows all twelve months side by side, colour-coded, so you can see your patterns at a glance rather than hunting through a journal trying to remember if March was bad.

The monthly focus box at the top of each tab was something I added for myself, honestly. Because data without humanity is just numbers, and I needed somewhere to put the month in context. A word, an intention, a note that says this was the month of the difficult appointment or this was the month things started to shift.

The Medical Appointment Tracker emerged from the years of misdiagnosis. When you see multiple specialists across a long diagnostic journey, things fall through the cracks. A referral gets made and disappears. A medication gets changed, and three months later, you can’t remember which doctor changed it or why. This tracker has an appointment prep sheet — which I fill in before I go in, so I’m not relying on a brain that, frankly, isn’t at its best during a medical consultation — and a full history of every test, referral, and medication change across every appointment I’ve had.

There is a field on the prep sheet called “Things That Were Dismissed or Not Addressed.” I added that deliberately. Keeping a record of what wasn’t followed up on is one of the most powerful advocacy tools available to those of us who have learned, sometimes painfully, that we have to advocate for ourselves.

The Symptom Management Planner feels most personal to me. It’s not a tracker — it doesn’t ask you to log anything daily. It asks you to think carefully, when you’re well enough to think clearly, about what your body does, and what you’ll do in response. There’s an If This Then That plan — at a pain level of 4, I do this; at a level of 7, I do that — and a flare plan, a pacing guide, a rescue toolkit, and something I called communication scripts, which are pre-written messages for the situations where finding words is one thing too many. Cancelling plans. Asking for help. Pushing back when a doctor dismisses you.

I built that last one for me as much as for anyone.

What I’ve noticed

I’ve been using these tools for a few weeks now, and a few things have become clear that weren’t before.

My worst weeks are almost always preceded by a run of shorter nights — not dramatically short, just consistently under seven hours for four or five days. That sounds obvious when written down. But I genuinely didn’t know it as a fact until I could see it in a column of numbers with colour-coded levels that go from green to amber to red.

I also know, now, that gut symptom flares and fatigue flares are more correlated than I thought. That’s useful information. That’s the kind of information that belongs in a conversation with a gastroenterologist. I have it because I tracked it, because the tracking is finally in a form that lets me see it.

A note on paper

I still journal. I want to be clear about that. I still have a notebook on my bedside table and I still write in it most mornings, and I still find it to be one of the most grounding things I do. The shift to digital health tracking has not replaced that, and I wouldn’t want it to.

What it has replaced is the attempt to use journalling for something it was never really designed to do. Journals are for processing. For presence. For the texture and feeling of a day, a week, or a year. Spreadsheets are for patterns. For data. For the kind of knowledge that requires distance to see.

I needed both. I just didn’t have the right tool for the second thing — until now.

If any of this resonates

The three tools I’ve described are available in my shop if you’d like to use them. They’re designed to be gentle — you don’t have to fill in every field, you don’t have to use every tab, you don’t have to do anything on the days when doing anything is too much. They’re built for the reality of chronic illness, not an optimistic version of it.

But even if they’re not for you, I hope this is useful as a permission slip of sorts. To try a different system. To stop asking your journal to do something it can’t. To let the tools catch up to the complexity of what you’re managing.

You already know more about your body than most people ever will. It just needs somewhere to live.

— Melissa

The Spoonie’s Health Tracker, Medical Appointment Tracker, and Symptom Management Planner are available in my shop.

Subscribe now

How I Found Out About LDN

I heard about Low Dose Naltrexone through another patient advocate, not through the medical system. I was lucky — lucky that I had access to research I could take to my doctor, lucky that they were willing to prescribe it, and lucky that when I had to change doctors, I found someone willing to keep me on it. That’s a lot of luck to need for something that should simply be a standard consideration.

It isn’t mainstream yet. It should be. And this is why I keep talking about it.

If you’d like more about LDN have an eBook: Low Dose Naltrexone for Chronic Pain and Fatigue that I updated for 2026. You can buy that here.

Why It’s Worth Knowing About

LDN is an opioid antagonist. At a low dose, it works differently in your body than it does at a full therapeutic dose. It has limited side effects, and for those it helps, it can help significantly. I can’t say that about most of the other options out there for chronic pain and fatigue conditions. The side effects that do occur — vivid dreams are a common one — tend to be transient. They show up during the titration phase and then ease off. It’s genuinely rare for people to stop taking it because the side effects are unbearable.

Compare that to medications typically prescribed for conditions like fibromyalgia. The percentage of people who can tolerate those long-term, without intense side effects, and without the drug eventually stopping to work — it’s very low. The cost-benefit calculation has never worked out in their favour for me. LDN’s has.

That said: it doesn’t help everyone. I’ve never claimed it does. We all have different comorbidities, different histories, potentially different diagnoses. But if you have chronic pain, chronic fatigue, or related symptoms, it’s probably worth exploring.

The Nitty-Gritty of Starting Out

The most common frustration I hear — and what prompted this update — is that no one talks about the practical details of actually starting LDN.

You’ll hear “start low and go slow,” but what does that mean in real life?

Research typically uses 4.5mg as a standard dose, with some studies using 3 or 3.5mg. But in practice, especially for people with chronic fatigue syndrome, you often start much lower than that. I started at 0.5mg and doubled roughly every four days. When I reached 2.5mg, my body started signalling that something was shifting — I didn’t want to keep increasing at the same pace. I slowed down significantly, and it took a few months to reach 4mg. I’ve never tolerated higher than that. I’ve sat somewhere between 3.5mg and 4mg for most of the nine years, and more recently settled at 4mg.

It took me about six months to know for certain it was working. At that point I thought I’d trial coming off it. That answered the question quickly — it felt like being hit by a truck. Now, whenever I’ve accidentally underdosed for too long or had to stop before a procedure, the first thing that comes back is that 4am morning stiffness. My body lets me know.

I do think it took a long time to feel the effects clearly because there was a lot to heal — about 20 years of accumulated stuff. The deep, slow kind of healing doesn’t announce itself on a timeline.

What It’s Done For Me

The most notable thing LDN has done for my body is stabilise my immune system. Before I started, I caught every bug going around. Constant mouth ulcers, constant cold sores — my immune system was a mess. After starting, those almost disappeared entirely.

More recently, I’ve had a few mouth ulcers come back, and my gut issues — which had been simmering for years — flared significantly last October. We’re in the middle of a diagnostic process right now. My honest suspicion is that my holistic coping mechanisms and treatments, including LDN, helped mask the severity of some of these underlying conditions. Something similar may have happened with my endometriosis — things were being managed well enough that we didn’t realise how badly it was affecting me until the end.

So I think LDN has helped keep a lot of things stable. But it isn’t a cure. It doesn’t fix everything, and it doesn’t stop other things from developing.

If you want my whole story in one place - check out my latest book Finding My Own Pace.

There are also over 500 videos on my YouTube channel that you can check out.

Surgery and Opioid Conflicts

One thing worth knowing: LDN and opioids conflict. If you need surgery or a procedure involving opioid pain relief or sedation, you’ll need to pause your LDN beforehand.

For my endometriosis surgery, in hindsight I think I should have come off it for longer than I did — the pain relief didn’t work as effectively as it should have, which I believe was connected. For smaller procedures — like my recent colonoscopy and an upcoming MRE — I’ve found that missing just one night is enough. I took my last dose the night before, had the procedure the next morning with IV pain relief, and was fine.

But this is deeply personal. If you’re sensitive to medications, you may need longer. Always work with your medical team on the timing.

What’s Changed in 2026

For most of the nine years, I’ve been getting compounded capsules from one pharmacy in New Zealand, and paying accordingly. The cost has crept up consistently. But the landscape has changed — there are now more compounding pharmacies, including options through Chemist Warehouse where people are paying around $20 a month for a liquid formulation. I’m paying $120 for a three-month supply of capsules. That’s been fine for convenience and travel, but the savings available now are too significant to ignore. I’ll be shopping around.

The Bottom Line

LDN is not a quick fix. It is not a panadol — you can’t take it and know within hours whether it works. You have to give it time, and that time is measured in months, not days.

But when you weigh it against other options for chronic pain and fatigue conditions — in terms of side effect profile, long-term tolerability, and potential benefit — it deserves a serious look. The LDN Research Trust maintains an extensive list of conditions being researched, and it’s a good starting point if you want to explore whether it might be relevant for you.

I’m still on it. Nine years in, still grateful I found out about it. I hope someone reading this gets the same head start I didn’t.

Leave a comment

Subscribe now

Resources for you:

Gut Issues Update Video

Hysterectomy and Endometriosis Excision: One Year Later Video

My Top Treatments for Chronic Pain and Fatigue 2026 Video