Diary of an ASD Squirrel. Day 186 , Thursday 02/05/2024
So I’ve been feeling ruff as a bears bum for a few days now (again , you would think more regular exercise would take me the other way 🙄) so I planned to try and sleep thru to 8ish. I put in my ear plugs & set the alarm accordingly.
I was awake at 05:50 … a mix of my traitorous body responding to its Pavlovian training & the noise of herself romping round the house like baby elephant , in that considerate way she has.
So here I sit, my brain is moving at glacial speeds & my body feels like a train hit it.
At least she’s in the office today, so a day of peace & quiet!
I hate how little I am able to do at the moment , either thru illness or depression stealing my motivation.
Sometimes I wish I had a child , or a dog - they seem to be highly motivational from what I can see from the lives of others who have them.
I would be a terrible father or dog owner though , so probably best all round that I avoid both .
Oh while I’m on a roll I WISH my tinnitus would give me a break! It’s been screaming so loud in my ears for days now!
Where to go next on my ASD journey has been on my mind for a few days, the GPs completely negative reaction last time I went to see him has ripped me asunder. Where I had a set path now I flounder in indecision. I guess I have to decide if I need to be able to function better in society , or whether I just stick 2 fingers up at society & return to being a hermit.
Had a really epic FO4 session today after I finished my chores & then when Mrs S. got home we went & did our civic duty & voted - me being plagued by dizzy spells, nausea & exhaustion on the walk there and back & her being plagued by her dodgy knee ! We made a right pair, I think the thing that holds our marriage together at the moment is the need for mutual physical support , together we make a whole working person !
Caved & watched the first episode of Fallout - I’ve missed a couple of the games so I don’t know just how true it is to the earlier games, but I (& surprisingly Mrs S.) enjoyed it , so yeah, roll on ep 2 !
Final Thoughts.
Others write of monumental achievements , of beating challenges , or of coping with pain or personal circumstances that would reduce a normal person to jelly. I wish I were that strong.
I defo have EDFitis again , & it seems as though it’s gonna take its own sweet time to pass. Bummer !
Thank you to all those who are helping me on this journey, in a myriad different ways. I am thankful to each & every one of you! 🫂 🫶🐿️🖖
The GP essentially refused to do anything & aimed me at the National Autistic Society , who are a charity & therefore cannot refer me for further tests or treatment 🙄🤦♂️
@HistoPol I don't know the NHS either.
Over here, the way ahead would be to raise a complaint and ask for a different physician. But that takes spoons, and aloof medical indifference is anathema to spoons-having.
Maybe doing some research and then going back an insisting on a referral to xyz.
In essence, this might be the Peter Principle at work: the GP has been "promoted " to his level of incompetence and doesn't know what to do. I'd say, he should be more than happy to make a referral and "pass the buck."
@HistoPol@androcat@actuallyautistic Currently lacking the spoons to pursue it, but I guess chasing the GP who sorted the referral for my ASD Dx will be the next step.
I understand. That visit was disheartening. Take your time to process that. And then, fight back.
IMO, it is merely a sign of the doc's own incompetence regarding your case.
Sad, but better this way then an unnecessary or harmful treatment.
@HistoPol@actuallyautistic Because the Consultant suggested approaching the NAS as an additional resource the GP leapt on that as the way forward … 2 reasons why
A) it saves him doing anything
B) it saves his budget .
C) he’s a dick with very little idea about MH !
Supports my hypothesis: incompetence.
However, once "the smoke clears," he should become aware of the fact that only treferring you to non-medical practitioners will not limit his liability.
Therefore, him not being a total dumb*ss, he should jump on the idea of him referring you to another doctor.
@Tim_McTuffty@HistoPol@actuallyautistic National Autistic Society may be able to help you pursue avenues of treatment though or direct you. You won't know until you ask.
@Tim_McTuffty
Mental health is a difficult thing to struggle with...
And I guess it's up to you what you "wanna do with the diagnostis". I had a therapy group for autism and adhd but it didn't teach me much as I had already read loads about it. So I just kept reading things about it that sounded interesting to me. And that helped me to understand myself better. You don't need to do anything with the diagnostic bit, you're still you, nothing changed about that. The diagnosis can help you to understand yourself better, at the last that is what it did for me. And with the knowledge I gained, I was able to tell friends and family more about it. My bestie read my dummies book on Aspergers (yeah I was diagnosed when that was still a thing 😉) and that helped her to understand me even better as well. But you can't force it on others, my friends wanted to know so I told them. Some people said I used my diagnosis as an excuse for shitty behavior... So they aren't really in my life anymore...
It's not that they need to do something with your diagnosis, it's what you want to do with it... And when you know, you can find the support that may be available to help you with that.
But that's just how I looked at it and how I did it. We're all different in feeling and acting on things.
So see what you would like to do with the diagnostic bit and then see what is out there that could support you with that...
Hope this helped 🤗 😘
@Tim_McTuffty
It is. But you'll get more disappointments if you seek for more help. At least that was my experience. You're hoping on the best things to help you, but many aren't able (or willing/understanding) to give you "exactly" what you think you may need. They have their own ideas and believes and they will not always line up with yours.
If you're "lucky" enough, you'll find a specialist of some sort that you click with, that does understand and who is willing and able to give what you may need... But it's a long journey...
That's why I started with reading up about it while I was looking and waiting for the things that could help me. The better I understood myself, the better I could explain my needs.
But then this is "just" my experience, a few years ago and in a different country...
So don't be discouraged. Don't expect the right sort of help on a golden platter. You will be disappointed, probably a few times, before you may find that one person that can help.
🍀 And I hope you will be able to find what you need to help you along the path... 🍀
🫂🤗🫂 @actuallyautistic
@Tim_McTuffty@PixysJourney@actuallyautistic can you ask to see a different GP in the same practice? Or even transfer to a different practice? A young friend of ours had a very positive response from her GP
@Tim_McTuffty@actuallyautistic
Unfortunately, your GP's reaction is only too common. Often it's simply because in your area there is very little that they can offer. Even therapy is often limited to a few sessions and even more often, with someone not trained to deal with an autistic.
It's probably why so many of us find places like this so helpful, or try to seek out autistic groups irl. Because all too often the only and the best way to learn and find out things to help, is from each other.
It maybe as you say the best way forward , given the givens. I could fight the NHS to get further help but that will lead to stress & will be at least partially counter productive !
I love the @actuallyautistic community I have found on here & hope to be a part of it for a long time to come !
"I just stick 2 fingers up at society & return to being a hermit. " I made that decision in 2009, took me a while to get used to, I would not still be existing primarily inside my tiny little apartment unit, (as much as possible) if not for the internet giving me this precious human need for connection with other humans.
My body hurts constantly, I feel more energy taking nerve pain medicine regularly.
My mind never stops running even when my body sleeps.