The main reason I haven't written in this blog very much is because I've generally felt as if I would end up writing hte same thing over and over again. Grief is hard. Justifying grief to yourself is hard. Grief for the things I love but am unable to do, grief for the future that never was, grief for the future that remains uncertain.
I am trying to get back in to music at the moment but it feels painfully slow. I want to write and play music in any way but what I want to do most of all is play my trumpet. It's my instrument and I can't accept that it is gone from my life.
I'm finding it hard to convince myself that I am doing things right. I don't know if that's part of hte grief. Maybe if I can convince myself that I am doing something wrong, then I will eventually put it right and it will be fixed - rather than accepting that this is how things are right now and for as long as my body decides this is how things are going to be.
I have experienced some progression recently in my hands and arms. It is hard to know what has caused this though it is possible that getting an ipad was the tipping point. Apparently too much touch screen is bad! It has been happening for a while though.
I am yet again facing hte decision of do less vs more help. It's not so much about pride for me. I see others around me who need help and do believe they should take it and fight for it. For myself though, I look at others with an ME/CFS diagnosis (which remains my most probably diagnosis) and see them trying to get 'better' - attempting to cut back activity to improve their health. I try instead to maximise what I have right now. I stay within the remits of my health but don't follow the '50% rule' (whereby you do 50% less than you could do in order to allow your body to heal and/or not damage itself). But, I don't see how I could live like that. I could never shower (even with assistance), would never leave the house, would use the computer minimally, rarely if ever leave bed etc. I don't understand how I would 'choose' that life for myself. That life should never be a choice, only ever a necessity.
I think I need to trust myself more.
I do know for sure that I need to get better at self care. For now I have 3 main things that can be done/need doing.
- accept more help with personal care
- improve sleep patterns
- decrease time talking/actively hanging out with people - even PAs and partner.
I'm hoping the above will save enough reserves that I can use my resources for the activities that matter most.
