Women with ADHD and Chronic Pain – Pacing yourself is key

And once upon a time I could just power through, but these days my health issues cause me all sorts of problems on a level like they never have before. (After nine years I’ve finally drilled them to Hypermobility Spectrum Disorder – who new this could include POTS (Postural Orthostatic Tachycardia Syndrome), Central Sensitisation Syndrome (chronic pain) and Mast Cell Activation Syndrome (MCAS)??!)

The interaction between these health issues, ADHD, my load and the effect of this all on my cognition and health is finally forcing me to make some serious changes…

The link between hypermobility, chronic pain, autonomic dysfunction and neurodivergence

There’s tonnes of research that links ADHD to chronic pain but the plot thickens as research is also (finally) confirming the link between hypermobility – being more flexible than most – chronic pain, neurodivergence and dysautonomia (autonomic nervous system dysfunction), the most common form of which is POTS.

Lucky me! I have the lot.  And when I have a lot of tension in my body it’s the worst thing possible for my pain as it goes into overdrive.

All this, of course, causes much worse cognitive function which takes my ADHD challenges to a whole other level of shit! 💩

Good decisions are not possible when you’re completely overloaded.

Anyhoo… being under this much pressure, in pain and beyond exhausted, my cognition was so much worse than it usually is (which is saying something) and this meant that on top of not being very effective at getting all the things done, I made one seriously bad decision.

I definitely shouldn’t have gone away for two nights over New Year (but it had been FOREVER since I had seen a huge bunch of very dear friends, which is important too, right?!) but the fact is, I felt like a shadow of myself. I was in bed by 10 that night anyway because I literally couldn’t speak to anyone I was so tired. But this time away is what tipped the whole period into a complete nightmare.

The crazy thing is, I had actually planned everything to NOT be too stressful very carefully. We had a lovely granny flat to stay in instead of camping like everyone else and I had lists galore that I had started weeks in advance.

But there it was – the red flag I missed.

If I’m trying to work out how to make sure something I’m planning isn’t going to be WAY too much and derail me, I need to actively zoom out and look at WHAT ELSE is happening around that time.

To be clear, I wasn’t being a hypocrite. I wasn’t saying to you all “Don’t smash yourself” and then turning around and not caring for myself. This was 100% a result of how much worse my cognition has become due to health issues.

It meant that three of my biggest cognitive challenges around the perception of time;

• Serious problems with times/dates and planning
• Serious problems with underestimating how long things take and
• Serious difficulty doing things in advance – because I find it so difficult to imagine what I need to do until it’s happening

…fed into one another creating the perfect storm.

When I finally made it to Tassie, it took over a week for everything to settle down – my workload, my pain and insomnia from overstimulation – and to finally start to recover.

It was such a difficult time, it’s hard to put it into words.

And this time I REALLY did learn my lesson. I’ve even started having a rest every day, just for 20 minutes of so, to break up being ON for so many hours in a row. (Like sometimes 15! So not OK though In!!)

How am I going to make sure this never happens again?

In 2024 and beyond, I am 100% committed to ensuring I NEVER have to manage such an incredibly big load solo again.

My words for the year are WELL-PACED AND SUPPORTED, perhaps not the most dazzling of intentions but they are what my heart desires more than anything. (If you haven’t chosen something to commit to this year yet, what might your words be?)

I now have a NON-NEGOTIABLE RULE that I will never have more than one extra commitment that will be even slightly demanding each week.

And most importantly, I have a weekly check-in process locked in with a support person where I look forward a month so that I can ensure I am not going to be overloaded. (Bless my amazing VA!!)

Hypermobility Spectrum Disorder

I’m shocked how long it’s taken me to put all the pieces of this puzzle together in terms of really understanding my health problems – the migraines, and nausea, episodes of NEEDING to lie down, of full body pain, of extreme physical symptoms of anxiety but without the emotional stuff, of not being able to handle heat or cold at all anymore, of extreme dizziness, of IBS, numbness and tingling, and of extreme cognitive challenges that are FAR worse than they ever have been.

Finally, I know that all of these problems are part of Hypermobility Spectrum Disorder.

I think if my mental health had been worse perhaps I would have gotten answers sooner but as I’ve been able to ‘soldier on’ – and every specialist under the sun has just given me their version of what the problem is without the full picture, it’s all gone on for NINE YEARS and only now do I feel as though I can put in place what needs to happen to recover and manage my health issues better.

There are so many of us in the same boat, and it makes me feel better that many health professionals have been here before me – completely stumped for years on end, invalidated by family and doctor after doctor.

To hear about many an incredible health professionals’ experience and for so much valuable info about these conditions and where to get great support, check out the Zebra Talks podcast (which explains the zebras reference!) and Zebras Australia.