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Hands and Tears

7th  March 2018

I am really struggling after this weekend. Trying to cope with the feeling that even my family don’t understand my ‘problems’ anymore. Or if they ever did? Or if I am just too sensitive? Maybe my weaknesses reflect their own worries and they are too afraid to acknowledge them?

Whatever…these last few days have sucked.

It started on Friday when I realised that my ring finger on my right hand doesn’t easily straighten anymore, it looks curled when I turn my hands upside down. I know I have had issues with my hands since surgery (especially when holding and turning things, such as keys in the door) but when I looked at it I realised that the finger looks like it is losing muscle mass at the base and wasting.

In some ways it doesn’t surprise me as my hands haven’t felt fully in control for a long time, yet it is also pretty depressing. I am not yet 44. I’ve had a brain tumour, I am less fit and energetic than some people 20 years older than me. Or as my son innocently pointed out- his Nan (my mother) walks further and does more than me every day- and she is 70 this year. I feel like I have lost many mental abilities and now my hands look like they are seizing up…

Then Dave had a gig on Saturday evening that we knew will be a late finish, so I make sure I have a lie in on Saturday morning. I didn’t even wake until 10.30, didn’t get up and eat breakfast until just before 12, and had an easy day. At 4pm I went and played my relaxation music when using my Vitali-chi machine and fell asleep for a good 40 minutes – feeling totally relaxed. So woke with a bit more energy so I could go out later.

But then the band started playing. Oh shit they have flickering and flashing lights… and I could not cope. The whole experience I have written down here.

I didn’t get into bed until 2.42 that night, I needed 2 hot packs as I was shaking from the cold and the stress of it all.

I don’t know if I am more angry, (What would the pub have done if someone had photosensitive epilepsy? Would they have turned then off or risked letting them have a fit?), upset (That yet another side effects conditions my life), cold (from sitting by the door and ten outside for so long), stressed (from being scared I might have a fit) or just emotional to it all. Whatever it is I cry myself to sleep, my eyes still seeing flashes.

Again I wake at about 10.30, still feeling totally shattered and so didn’t move fast, had a shower with my legs feeling like lead. Took the dog for his walk, still with my body feeling extremely heavy, and just sat on the sofa feeling blank. By about 2pm I realise that I just need to go back to sleep, so again I put on my Vitali-chi and listen to my meditation music for another hour- well, if you call it listening when I am totally asleep! After that time I keep thinking I should get up, but I cannot seem to be able to even open my eyes, they still flash when I open them, so in the end I am there for well over 2 hours.

Despite this later on Dave tells me I am grumpy and need to go to bed early- as though going to sleep will stop all my emotions? Yes I’m tired, but I don’t want to fucking sleep my life away… I want to be able to have a late night and manage on 8 hours sleep like everyone else, and not feel by doing so the following 48 hours are a right off.

It’s hard when you feel no one understands. It’s even harder when you cannot find the correct words to explain your frustrations easily.

Sunday evening we decided to go out for a while, but then totally stupidly (as I didn’t listen to myself and my constant yawning) we ended up staying out until really late. I had said I wanted to go home, Dave didn’t want to and I didn’t insist we did. I felt shattered.

Monday was all but a sleepy waste too. It’s annoying when you try and help your 11 year old and you cannot remember how to spell simple words and you need to look up how to do the maths questions. Then end up telling him the answers as your brain says what it is thinking and not what you want to say!.. he is home educated but I feel like I must be the worst ‘teacher’ ever! I couldn’t take him out as I had planned as I just felt too worn out. I can’t even deal with his questions. I want to scream at him, “Don’t you realise I have side effects from brain surgery? Do you know lucky you are that I am not severely disabled, or dead?”

Maybe part of the reason I  feel worse is due to writing down and focusing on my side effects here? Maybe I just need to keep reminding myself what I can still do? What I could have lost? How much worse it could have been? What I am grateful for?

Still today I feel no one understands and I am a waste of space. I know much of it is my own judgement of myself and what I feel others think. But I can’t function. I’m in tears most of the day. My legs barely work. My brain even less. I just need to sleep. I need sleep and understanding mixed with a bit of love and support. Mostly for myself.

Next - “Scanxiety”