As good as it will get

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.

Parents
  • 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?

Reply
  • 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?

Children
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