I was so excited about starting my coding course.
It seems like a small thing, but since I’m currently not really well enough to work, having something in the diary to do twice a week and learning a tangible skill was a pretty big deal for me.
The first week was great. I was physically exhausted by the end, but I thoroughly enjoyed the classes. Funnily enough I had to go to my parents’ house because I was entirely running on adrenaline and was so hyped up I was almost shaking. I would get fed, calm my body down and then crash.
I realised pretty quickly that not working for quite a while had caused my confidence to take a massive hit. I’m not really one to doubt my abilities. I’m not a big numbers person (blame my terrifying maths teacher at the age of 7) but I’m generally able to do anything that I want without much difficulty. Honestly, that made me pretty lazy growing up. Knowing that I didn’t find things tough meant that I didn’t really work very hard because I didn’t need to.
Related: (Trying) To Plan For The Future With Chronic Illness
Now that my brain fog is so severe, I find it really bizarre that I struggle to read and to focus on learning anything. Put that in the mix with the constant pain, fatigue and all my other symptoms that are exploding, it can make doing even the simplest tasks really difficult. And that really affected my confidence. When I was at work I felt like I was letting everybody and myself down because I couldn’t do the volume of work that I wanted and needed to do. I’d become nervous in my abilities.
Well, not so much in my abilities. I’m still aware that mentally I’m really capable of doing the things that I want to do. But the physical stuff has really put a barrier up to that – preventing me from achieving in the way that I would expect myself to.
By the end of the second class I was a physical wreck. I was pretty much unable to function for the rest of the week – only dragging myself out of bed because my mum encouraged me to (we went on a hunt for a really high quality juicer that wasn’t insanely heavy. We failed. Oh, juice companies, why are you not in North West London?)
Monday’s class saw me trying not to cry throughout. The cold and the rain meant that the walk from the station after an hour of travelling was agonising, and my self-inflicted exhaustion from last week made sitting in an over-stuffed and really warm room incredibly difficult. I found that I was unable to focus on the content in the same way I was able to last week. I was having to hold my shoulders in place and all I wanted to do was curl up in the corner and disappear. Of course, I didn’t want anyone to know that was how I was feeling so I pushed through.
If there’s one thing I’m good at it’s pushing through.
I know that the weather is now getting worse and how my body physically reacts to that. I also know that pushing myself to the amount that I had to (even in the first week) was going to have a really detrimental effect on my health. So with much regret, I yet again had to quit something that I had started.
Related: My Body Is Freaking Out And So Am I
This, I feel, is such a common theme in my life. Wanting to do something, getting excited about it, only to discover that I’m not well enough to continue. And it’s not because of some negative mindset where I’m telling myself I can’t do it. My body literally won’t function. And this can be really hard to deal with.
For now, I’m making a compromise. I’m going to teach myself to code in small chunks on Code Academy, and will find a private tutor to come to my flat once a week for a few hours to help push things forward.
I have also accepted that where my health is right now is kind of like having a full time job. So my full time job is to focus on doing all the things that I know can help me up to a point and hope that soon some of these symptoms will clear. Unfortunately, instead of paying it costs a bloody fortune. But I’m trying not to think about that at the moment, and focus on trying to feel better so that maybe I can be well enough to start working part-time again.
Things get difficult when you already do most of the things you’re supposed to do and your body still doesn’t want to play ball. But I will not lose this battle for supremacy.
*shakes fist at body*
This afternoon my dad is taking me to see my osteopath (carrying my laptop on my back has pulled something in my shoulders and neck which has caused a very odd pain on the outside of my throat, my back has seized up more and my ribs are overcompensating, and just generally I need a bit of work). Interestingly, unlike many people with EDS, while my joints are hypermobile, in many places my body has massively overcompensated and most of my muscles are incredibly tight to try and keep them in place. We’re working at getting everything balanced and working the way it should for my body.
I’ve also started private sessions with a therapy-based pilates instructor. I have realised that I find it really hard to motivate myself to do exercise when just getting out of bed to eat or go to the loo is exhausting and incredibly painful. It’s a vicious cycle, because deconditioning only makes things worse, and building up strength through a normal range is so important for me. Having someone there to motivate you, as well as adapt and adjust what you do based on how severe my symptoms are (as well as setting homework) is really helpful.
While there’s no big ‘lesson’ in this post, I suppose I just want to say that sometimes we need to take a step back and realise that we need to stop for a bit. And that’s ok. It may not feel ok (and it certainly doesn’t to me), taking that time and giving your body what it needs to try and feel better is really important. I’m lucky that the people around me are incredibly supportive, but it still sucks. I find it hard to justify the time to myself, and often get frustrated when I do everything I’m supposed to do and I still get worse.
I’ve pretty much stopped reading anything about wellness on social media and any books about healing. I’m done with pseudo-science and relentless, dangerous hyperbole. I still have to tell myself that there’s nothing I’m doing to cause what’s happening right now, and that I only have so much control. I can try and get it back piece by piece, but I just have to accept that flare ups (and big ones at that) happen all the time, and all I can do is keep pushing on and keep trying.
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