So I haven’t officially had a relapse since June 2022, which affected my legs for the second time, so maybe I now have 2 spinal lesions? On my second MRI (done before said relapse) they found that whilst some older brain lesions were no longer active, some were highly active still with some highly active new ones on top. I do get confused about this part. I know that if I struggle to walk tomorrow and feel like I’m walking through treacle, that’s a probable relapse as it’s not something I suffer from otherwise, but what do you class the above brain lesions as? One continuous relapse? Not a relapse but just ongoing damage? I’m now on Tysabri, so monthly injections. I’ve had 3 so far and I’m not due another MRI until October.
It’s left me with an awfully short memory, regular mind blocks, unable to find words, get lost if I drive an unregular route and need sat nav regularly, easily confused, unable to multi task, difficulty focusing and concentrating, all which can lead to me feeling overwhelmed. My patience and intelligence is not what it was, though I was never an Einstein, I wasn’t stupid either.
To accommodate, my husband has to remind me to take my medication as well as watch me do it. If he doesn’t I will get distracted and maybe not take it or forget I’ve taken it or not be able to remember either way!! He does most of the driving now, I only drive to my place of work, my friends house and my sons house. He helps a little in the kitchen because I won’t pick up pans of hot water etc in case I drop them. I tell him anything I’m buying in case I’ve already bought it (I have 2 pairs of the exact same trainers and nearly bought a third, wouldn’t mind but I didn’t like the first pair!!). He has to keep an eye on my food shopping too for the same reason. I don’t like to socialise without him or my sister, I get stuck on what I want to say or I have to google, they help me without it being obvious. I can’t plan too far ahead. If I am planning for this weekend, I haven’t got the brain space to plan out next weekend too.
That all said I’m good at my new job. I talk to people a lot, but that’s ok because I’m pretty much saying the same thing to each one. My office has a door with a blind so I can close everything out in order to concentrate. My boss is aware my memory can be short so reminds me if I haven’t done something or prods me in the right direction.
I don’t think there is enough provision for the cognitive issues that can be equally as disabling as the physical ones. I guess because it’s hard to quantify, but still.
I will have a think about your ideas, but I’m leaning towards it being a huge amount of effort for only the tiniest possibility of success. Thanks for your help anyway though. Much appreciated.