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Where I’ve Been + Updates

So, as per usual, there’s been a huge gap in my postings. Several things have changed in the last 10 months that honestly, I’ve barely been able to process it myself, never mind analyse and share it.
If you’ve read this blog, you will know that I have a veritable smorgasbord of chronic illnesses vying for my attention right now. Well, this year, after seeing a rheumatologist, I’ve also added fibromyalgia and joint hyper mobility syndrome (although in the information he gave me, it also called the condition Ehlers-Danlos syndrome, hyper mobility type. I don’t want to put words in his mouth but it would explain one of the other weird stuff, like my weird skin, my ribs shifting into the wrong place etc.). I mean, if I started putting the acronym for these things after my name, I’d look super clever.
Sigh. Have to try and laugh right? But the other change that’s happened, I’m still really struggling with. I have been put on long term sick from work, as something was constantly kicking my ass and stopping me putting out quality work. Now, why am I struggling with this? Well, there are a number of reasons (though I am annoyed at myself for many of them, as there’s a lot of internalised ableism going on in my head). Forgive me, but I’m going to use this blog post to try and work this stuff out.

1. I judge myself on what I am able to do. For most of my life that meant judging myself wholly on my grades. I studied and worked and pushed as hard as I could, and that was for all tests, including mocks and small class assessments. Despite this, I have cried at every results day because I’ve never done “perfect”. I think this comes from being told at a young school age that if you work hard, then you’ll achieve your goals. I’m pretty sure everyone was told similar? Well, I wanted to be a doctor so I knew what that meant in terms of what kind of grades I was competing against. And when I got what I did…clearly I didn’t work hard enough. Right?
2. This next part is going to be difficult to write. Hell, I’ll probably delete this whole thing. Basically, I have long held, unshackling sense of self-loathing. Psychologists and psychiatrists have asked me when it started, why I believe these things about myself but the issue is I don’t remember any other way of thinking about myself. So to live with these beliefs, I have had to frequently try and distract myself and prevent myself from getting lost in those negative (and loud) thoughts. When you have work to do, this is relatively easy as there’s always stuff to be doing. However, being off sick means I’m alone a lot, and I struggle to get out and busy as 1) many things cost money which I have less of now 2) I struggle to get out at times because irritatingly I *am* sick so even things that I can do for free (nature, National Trust) it’s difficult-impossible to get there, enjoy the space, and get home safely.
3. To get back to work, they need to see that I am well enough to make it back full time, without the hours making me sick/relapse. However, it is actually becoming pretty difficult to find a voluntary position that a) isn’t physically demanding to make my pain and physical fatigue increase b) is more than just ~3 hours one day a week (which isn’t a decent representative of my work week). I tried various websites and local charities but after applying for a few different ones, I’m hoping I might have the answer (see below).

As it is, I don’t currently have an answer to most of this (not exhaustive) list. I’m having a lot of doubts regarding what I can and can’t do. All these conditions interlink with each other (physical to mental and vice versa) and I’m so scared that I won’t be able to handle full time work again. I don’t know, I hope  I can, but there’s so much stress and constant deadline after deadline. But I love working where I do, I don’t want to have to find something. I’ve spoken with some friends and I know some people are happy working somewhere they don’t care about and the money is enough as they can do do fun and exciting things outside of work hours. I don’t know if it’s because of my weird brain, or just my personality but that’s not enough for me.

However! I don’t like to end on a sad note if I can possibly help it so I’ll end this by sharing some recent good news (and the start of my road to going back to work). I’m going to be volunteering as an Historical Engager for the National Trust. I am pretty excited, I love history, and I’m looking forward to hearing more about the property itself (Anglesey Abbey, if you’re interested).

I’ve wanted to apologise to my friends, I’ve definitely not been as active in pursuing hang-out times. And it’s taken its toll and I miss y’all so much. See or speak to you soon I hope.

PS I’ve been think

 

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