Warning: Massive Grump Inside

I’m not having a good day. Woke up this morning and the slither of light between the curtain and the wall was too much even with sunglasses. Had a different carer who didn’t introduce herself which made me anxious, especially as I was non verbal and feeling horrendous. Johan fixed the light issue with my slanket and once my tramadol kicked in I was feeling a small bit better, but that was not a good start.

I’ve not been well enough to have someone in my room and I’ve been feeling lonely. Since typing was also hard I couldn’t even chat to someone online for more than a few minutes. I’ve spent most of the day lying there not doing anything because that was all I could do. Eventually I got my voice back and could tolerate my lamp on, but understanding speech and movement meant I had to kick Johan and Esther out.

Was a different carer this evening as well. She arrived early but luckily I was kinda expecting it so didn’t panic. I like her (I very rarely see this one) but talking to her for a few minutes made me feel horrendous and I had to kick her out after the pad change (I did so as politely as I could manage). I’ve been really emotional all day and it’s probably related to how bleh I’ve been.

I’m fed up. I’m fed up of being stuck in bed because the hoist isn’t installed yet. I’m fed up of not being told of changes with the carers so I end up panicking. I’m fed up of not being able to do things because I’m too ill. I’m fed up of not being able to fix things. I’m fed up of being so reliant on other people. I’m fed up of being so sensitive (to noise, touch, light, smell, movement…). I’m fed up of having muscles that get weaker the more I try to use them. I’m fed up of having joints that creak and crunch and keep trying to move out of position. I’m fed up of muscle spasms and jerkiness and getting stuck on one word that I keep repeating instead of saying what I want. I’m fed up of constant pain and weird sensations and being nauseous for years on end. I’m fed up of other people not doing what they’re meant to. I’m fed up of not being able to chase it up because I’m just too ill.

I just want to be better. Please?

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