The fact I “seem” to be coping with the big event doesn’t mean that I really am!

My hypermobile neurodivergent way of getting through an event might not be typical and will generally involve a lot of extra strategy and accommodations but it is just as valid as the next person's and, the more I own this, the less disappointed I am with myself or my circumstances. The world does not, in any large way, accommodate people with neurodivergent sensory responses to the environment or their not insubstantial neurological or physical differences, especially if hypermobile, therefore big events are seldom pitched to accommodate us, as a minority factor in the room. The very best I can do is have my own list of helpful methods and tools at hand to get me through these big events my way whenever they happen, with a view to minimising the worst kinds of after effects sufficiently enough for me to be able to hold on to the happy highlights instead of all the low points. Here are a few of my tips to myself in case they are of use to anyone else.

How long awaited hEDS diagnosis actually FEELS

So as it turns out, I'm not lazy, not hypochondriac, not a malingerer, not attention seeking, not making it all up, not interfering where I shouldn't, not feeble (far from it), not "over-sensitive" (ditto), not making a hobby or a hyperfocus out of illness, not collecting labels, not depressed nor anxious (except when the circumstances themselves pushed me that way), not trying too little nor doing it all wrong, not lost in self-absorption, not avoiding being a grown-up...or alive. I have been dealing with a complex multi-systemic health condition with as much grace and determination as I could muster on a daily basis. Unpacking some of the emotions of receiving a long awaited diagnosis.

Unmasking the “and this…and then there’s this…and this…” long symptom list of chronic conditions

If you’re in one of your health troughs, your very worse of days, weeks or months, the times when you’re a fortune hunter out there on all the forums and websites, ever hoping for a breakthrough piece of insight, remember this too will pass and that it’s not always going to be this intense, though it sometimes feels like it is. And importantly, you’re not all alone. There are others like you, with their two hands overspilling with overlapping and often utterly bewildering symptoms that get precious little ear from medical professionals. We may feel isolated in our struggle but there are a lot of us out here.

Change = laxity = release: An inbuilt opportunity for healing

Exploring possible explanations for links between weather changes, episodes of hypermobility (increased laxity), oxalate dumping and sudden flare-ups of physical and/or emotional pain, all as linked to neurodiversity and hypervigilance.

Learning to slow down

Letting a day of nothing in particular be an accomplishment, even more so than a day of “productivity”, is a necessary mind re-program I am steadily adopting for my health. Allowing myself to feel equally good about myself and, most importantly, relaxed because I managed to go slow today rather than ticking things off a list is a crucial reinvention of myself on the way towards, somewhere down the line, reaping a far healthier nervous system than I ever had in my life. I’m playing the long game now, the fruits of my labours no longer some transient thrill gained from fighting down another dragon but the slow and steady harvest gained from peaceful seeds planted in the ground on some equally slow and steady day and all the intervening patience I had to watch them grow. 

On oxalates, emotions, self-protection, autism and releasing: a hypothesis

Exploring the idea that certain chronically painful bodies have formed the habit of storing oxalates (toxic anti-nutrients) from common food sources in order to protect us when, really, this only does great harm...and how to get out of the subconscious mindset of vulnerability in order to heal.

Big emotions at the root of “chronic”

If TMS is behind your chronic condition then, until you accept this and take the necessary action, you’re unlikely to move on. You have to believe in it, commit to doing the work and garner the faith that you can and will get well again. You have to let go of any negative feelings that arise from the realisation you’ve been caught in your own mind-trap all these years because it really wasn’t your fault as you had no idea and the brain is extremely good at doing this thing that it does to distract you from intense emotions with symptoms (and utterly convinced it is doing the right thing; that your very survival depends on it, thus it gives it everything it’s got). That’s a huge amount to contend with; the odds were stacked against you all along, but not anymore, now you know and can learn the tools for healing.

Worrying or stimming? Looking at an overactive mind from a neurdodivergent point of view

From what I can tell, neurodiverse criteria for getting a good night's sleep can be very different to "norm"...and we may not be as anxious as we seem, measured by usual criteria. So how can we tell when we are worrying compared to when just NEED to stimulate ourselves awake in the middle of the night (and why might that be)?