This Post Does Not Have A Title

Hi folks,

I want to talk about mental health and autistic fatigue/burnout. I say I want to, but finding the right words is difficult. In fact, finding any words is difficult right now, though not as much as two weeks ago. I think I need to backtrack.

I’ll start with this link from the National Autistic Society. Right now I’m ticking every single one of those boxes, and it’s incredibly frustrating. It’s also absolutely nobody’s fault. You probably heard on the news a few weeks ago (at least if you’re in the UK) about RAAC concrete in buildings. Suffice to say my day job workplace was affected, and since the start of September we’ve had no physical department or the ability to easily access any of our equipment. As I work in education, we had to attempt to continue as close to normality as possible for the sake of the students. Overall, I think we’re managing, and I honestly have nothing but praise for literally everyone who’s trying to sort out a terrible situation.

Unfortunately, it seems this has been change on a scale I’m simply not equipped to deal with. Normally I work in a prep room, mostly with two other people, and only needing to communicate with our dept. Since September I’ve been attempting to communicate with an entire school. The irony is that some of it has been quite fun (we’ve adopted the new librarian as an honorary scientist, for example), but I was struggling more and more. My overloads were happening multiple times a day. Several times I went non-verbal… this is hard to explain, but in stressful situations I find myself literally unable to speak. It feels like a block in my throat preventing the sound from coming out. When I can speak again, it’s often only syllables. Several days I simply couldn’t process language sufficiently to get beyond barking words and hoping I could make myself understood.

And yet, it didn’t even occur to me that all was not well until two weeks ago, when… Okay, I left work, sobbed all the way home, and continued all evening. It was obvious I was in no state to go back to work, and for the first time in 21 years I was signed off. (I actually had to ask what to do with the sick certificate!) Thankfully it’s now half term so I don’t feel as guilty. I’m still struggling to function normally though… Anything at home is fine. Anything that involves attempting to go out in public really isn’t!

And to compound this, I injured my shoulder a while back, and it’s gradually been getting worse. Preliminary physio appointment said some sort of rotator cuff injury, which for the uninitiated means “this bl**dy hurts”! Things I currently can’t do include:

• Put clothes on normally (left arm has to go first, or I really know about it!)
• Take clothes off normally (even more fun. I have developed the dexterity of some kind of snake-creature in order to avoid raising said arm past the critical point)
• Pick up a s*dding glass of water  from the table next to me (I actually have to reach across with my right hand!)
• Comb my hair. Or style it. The fact I don’t look like a scarecrow is a miracle.
• Use roll-on deodorant under my left arm. Simply can’t raise it high enough. (Probably best to stand on my right if you see me)
• Lift anything heavy. This includes FreyCat. He is unimpressed and has taken to standing on my lap purring loudly to get cuddles instead.

Things I CAN still do include baking, knitting, reading, singing and apparently write long rambling blog posts whining about my lot. Though I hope this doesn’t sound like I’m whining because I certainly don’t intend to. My initial intention was to attempt to explain what autistic fatigue is, and I have no idea if I’ve done that properly. Have I explained the total dragging exhaustion that comes just from trying to think about what I need to do? The shame that I can’t just shrug my shoulders and get on with things like the rest of the world? Or the frustration from hearing “everyone feels like that sometimes” whilst knowing that no, you really don’t literally lose the ability to speak or move when you get overwhelmed and that a simple trip to the supermarket is going to exhaust you for the next three hours?

My doctor has been brilliant though – although there is another comedy footnote here. When I first saw him 11 days ago he suggested blood tests to rule out any physical conditions. Great idea – though as I’m n**dle phobic I was hardn’y thrilled at the prospect. Last Monday morning I had the blood test. Coped. Wednesday morning he called to say that my potassium levels were high which could indicate heart problems (!)  though it was more likely there was an error with the test. So back I went for a second blood test and an ECG. Heart fine, Doctor certain that the first test was just a glitch. However Friday morning he called again…second blood test had been unreadable so – hurrah – could I go back for a third one?

Me: “Oh, for flip’s sake…”
Doctor “I said something stronger than that!”

Anyway, I’ve heard nothing back about the third test so am assuming all is well and nobody else will want to stab me this week!

Did this long, rambling post make any sense at all? Who knows. Here, have a photo of a recent gig so you know I’m still here, and I’m still trying. Hopefully normal service will resume very soon.

Stay safe,

Carys xx