Published on 12, July, 2020
This is as good as it gets - that's what my dr said to me at the end of last week. It's been playing on my mind ever since. I have autism and CFS. Both cause tidal wave effects and I get support to a degree but a lot of it I'm having to face alone. I think the autism gets triggered because I'm sensitive to how I feel things and with CFS I'm exhausted, absolutely drained, and have to deal with pain, sore throat and headache and dizziness.
My dr said I need to do things in small amounts but I'm finding changing to this hard work because I always used to be able to do anything but now too much throws me. If I stand and walk for more than ten minutes I'll fall over.
My mum is a huge support, she's my rock and I'm so lucky to have her but no one else understands me. My dad doesn't support me. A lot of the time I feel like I'm in this alone and it's a sad realisation, especially that my dr thinks it won't get much better.
I'm depressed. I'm scared of how disabled I'm becoming. And my autistic brain can't process it all. My anxiety is bad, so triggered since last week. I know I'll adapt, learn to understand the new "normal", but until I do I know I'm in for a lot of anxiety and meltdowns.
Hi Ruby-Rose. I'm in a similar situation- I don't have CFS, but I do have endometriosis and that comes with a lot of fatigue even when it's not actively painful. It's really hard to accept that you can't do everything you need/want to do, especially when you used to be able to manage reasonably well.
Are you aware of 'spoon theory' at all?
I don't think I would have the energy to do group therapy but because of my anxieties it's something I probably wouldn't be able to bring myself to do.
Ruby-Rose.
I don’t really feel lonely but it’s nice to have places online where you can talk with people who share some of your feelings. There are lots of in person support groups too if you want.
I had some group therapy once which was an eye-opener but you wouldn’t be forced to do that if you weren’t keen.
I'm glad you found it helpful. I'm hoping I'll find the same. Sometimes it just feels really lonely, do you get that too? I've done a lot of research and self help already, it can be a lot to take in but I want to get to feeling good pronto.
I’ve had lots of CBT and it did help me understand some things about my mood so I’m sure you’ll find it useful. There will also be lots of self help stuff on the NHS website which you may have already seen or been signposted to.
I don't know whether she was trying to help me accept it by saying that. I should have asked her to clarify and explain, I don't always understand what people are saying. I don't think I've accepted it yet. Maybe that will come later on?
I'm on a waiting list for CBT to help with my thoughts and thinking, so that should help lessen the pressure.
I guess accepting the situation you’re in right now is important but to say this is as good as it gets sounds odd. Reminds me of the excellent Jack Nicholson film and things do get better in that.
Oh I know she's not the best Dr, never has a positive approach towards anything. Thanks for the link, I do appreciate it! I'm going to have a look now.
It's a bad cocktail. Wish I didn't have it. I used to get tired from sensory overload but then the tiredness became complete exhaustion and it led to the diagnosis of CFS.
Thanks, that's good one day at a time. I'm going to go at a steady pace and try not to burn myself out.
I am so lucky and grateful to have my mum. She really is the best person I know. I love her to bits.
That's a bit defeatist of your dr! It might gradually improve, or they might find things that help. Someone else recommended this video in another thread, about why we have all the things (various illnesses which autists often have), and it might be worth looking into things that help for mast cell activation, which I plan on googling myself when I get round to it...
https://wwwhttps://www.youtube.com/watch?v=VVJxpaJAt94&ab_channel=Aucademy.youtube.com/watch?v=VVJxpaJAt94&ab_channel=Aucademy
Sorry to hear you’re going through the wringer Ruby-Rose. I think autism is exhausting enough but to have definite CFS as well - that quite a cocktail. You’re doing something healthy in writing out how you feel and sharing it with those who’ll understand. I hope you are able to take it one day at a time without too much overload but I know that’s easier said than done. Good to have your mum’s support.