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.
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.
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.
Ruby-Rose.