On spirals and balancing acts

One of the main reasons that I took this year out is because my health and mobility have got gradually worse over the last few years, to the point of decompensation - where the last small changes have made a huge, huge difference. I can see quite clearly now that I was at the point where poor health making my studies much harder and more energy/time consuming, were taking away any time/energy to make any positive changes, spiralling downwards in ever decreasing circles.

I have already noticed the benefits to my health of having been able to step out of this spiral. Through having my sleep out for the first week, I now have a fairly decent idea of how much sleep I currently need. I've also started to learn how to pace my activities - to try and level out how much I'm doing each day to avoid energy peaks and troughs - and started to keep a note of what I'm doing and how my energy is as the start of working out my baseline.

The most dramatic change has been in my autonomic symptoms (nausea, dizziness, fainting, temperature dysregulation etc), partly because I'm no longer exhausted, but also because I've had time to focus on increasing salt and fluid intake (it's not as simple as it sounds), on eating small meals more frequently (big meals make all the blood go to my tummy, which means there's not enough for my brainbox), on having proper rest time in the afternoon when I would normally feel worst.

I am relishing the time to get to know this new body of mine, with its new strengths and new weaknesses. I am learning to listen to my body. It is not easy, and I am so far from done (will I ever be done?). There are some things that will get better with some time and love and attention, and some things that I need to learn to live with.

But this, in some ways, was always going to be the easy bit - juggling meds, learning exercises, knowing when to rest, finding techniques to minimise symptoms. The difficulty comes next year when I have to start factoring medicine back into the equation again.

That is why my sole aim for this year was not to sort my own health out. It will all be wasted if the med school will not live up to their responsibility to make reasonable adjustments for me. If the don't, then once again everything will spiral down.

They don't seem to understand that not only do I have less energy than other folk to start with, but that I also have to expend a lot of time/energy to keep myself healthy - doing physio, going to doctors appointments - AND that everyday tasks take more energy than they take other folk.

The best example is that when I asked to be placed at one of the 3 hospitals within 15 minutes of my house, they said that I could use the hour long journey to placement to rest. They fail to see that travelling is very energy intensive for me, so it's not just that I lose 2 hours of a day that already effectively has less hours in it but that I then lose more potentially useful time because I am too tired to use it.

Things will be easier when my general health is a bit better in various ways, when I can drive so that it will be less energy draining to get around, and when I am more used to being in this body and to using the wheelchair. BUT It will not get to the point where I can do med school without adaptations, because being healthy will take a lot of time and energy.

I'm sorry if this is a bit circular. I'm still trying to find a way to explain this to the medical school, and actually to a lot of other people. And to the bit of my brain that thinks that prioritising my health is selfish, even though my logical brain knows full well that I can be no use to anyone if I don't take care of myself - AND that I don't need to justify my worth in terms of a capitalistic model that would have the only important things a person can do being those that can be assigned a monetary value.

If you've made it this far, then I would suggest you follow it up with a much more coherent post from Wheelchair Dance, which spoke so poignantly to me about how hard it is to bear the burden of self love when a disabling society tells us that we are worthless and broken.

Blah blah blah, crunch, crunch, thud. <