That Was Scary

My cognitive symptoms got really bad for a while. I’m still not back to my normal, but at least I can kinda think straight now which is an improvement.

At the worst of it, I found it really difficult to understand anything- Johan would ask a really simple question (such as asking me if I want something) and I wouldn’t understand what he was talking about. I was finding it stupidly hard to find the right words, and one day I stopped being able to speak at all. I was also finding it really difficult to work out what was real and what was imagination (including aural and visual hallucinations) so I spent the time absolutely terrified because I didn’t know anything. I also felt really stupid- like my knowledge was broken.

I can deal with pain. I can deal with not being able to sit up straight. I can deal with fatigue. I can deal with feeling deathly ill. I can’t deal very well with feeling like losing my mind. It was the scariest thing the M.E. has thrown at me.

The only other time I had symptoms like these was when I was at my illest in December. This time though I’ve actually been doing really well physically, and my other symptoms haven’t been that bad. It was just my brain was broken.

I’m getting back to where I normally am. I normally have some mild brain problems (word finding issues, concentration problems, forgetfulness) but this was something more extreme.

Other than that, I had the wheelchair man (his term) come out to assess my current wheelchair. He says there’s a 99% chance I can have an electric wheelchair which would be amazing šŸ˜€ I’ll need to wait a bit, have a few assessments, prove we can store it and get it around the flat (and out as well) but hopefully it will happen and will help me so much.

I’ve just had the CFS clinic peoples come out to see me. They’re happy with how I’m doing and what I’m doing, and my plans. They’re also supportive of the idea of an electric wheelchair. They agree that mobility is more important than walking, so I’m to ignore any GP who tells me not to use a wheelchair. It has helped reassure me knowing that they are on my side, they are helping me with what’s important to me (mobility, getting out when I can) and can help with suggestions and things. The psychologist is going on maternity leave soon (she looked rather pregnant) so when they come out in 3 months (agreed as I’m doing so well- we can contact them if needed earlier) I’ll be meeting their OT who I didn’t know existed until today šŸ™‚

They are a little worried about the cognitive issues I had the last few days, and if it happens again I’ll need it investigating as it’s not normal, but for now we’re just keeping an eye on it. Hopefully it was a one off and I’ll continue how I am šŸ™‚

3 thoughts on “That Was Scary

  1. *hugs*
    If it’s any consolation, I’m around 55% (AYME scale) and when I get tired (most nights) I lose the abilities to understand and to talk. Me and my husband have actually developed basic sign language between us to enable to me to communicate at all when I lose the ability to talk. It’s so horrible šŸ™
    I hope the head stuff doesn’t get worse again.

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