I don’t think my wants are unreasonable. I am not after a lottery win or a dream holiday, just an ordinary life. Over the last year everyone has had to adjust to living a different life and living with restrictions to their lifestyle in order to deal with the Covid pandemic. For me life has been about restrictions for more than 20 years and year on year my limitations seem to get worse. During Covid we have become very aware of health issues and how seriously ill people can become and what a huge impact illness has on life. What I have is not a serious illness or one that will kill me, but without wanting to sound too dramatic I feel like it ended my life 20 years ago. I haven’t spent that time unable to do anything, but I have missed out on a normal life and live at a snail pace (apologies to snails), everything takes so long and is so much effort.
When I had to give up work 21 years ago, I never imagined that I would still be unable to work or even function normally. Today I needed a letter posting, I can’t walk to the post box, sometimes I can drive a short distance, but not today, so I had to ask someone else to do it. Most people probably wouldn’t have a problem with this, but that is because they could do it if they wanted to and would ask someone else to do it just because they can’t be bothered to go out or don’t want to have to do something so mundane, but I feel so guilty and so useless.
The Covid pandemic seems to have generated even more of the thought that we have to fight everything and work as hard as we can, be resilient and adapt to change. With constant messages about keeping fit and getting exercise, working hard and not letting Covid beat us.
All I want is to be able to do basic things and to be happy. Happiness seems to equate to being healthy, having a job, having a social life, having friends and being successful. Social media exaggerates this as we are bombarded with what other people are doing and how successful they are and constant updates on progress, be it how far they have walked, how may friends they have seen, promoting their business, what they did with their kids or even what they made for dinner. There is nothing wrong in this, but to someone who can’t do these things it makes them feel even more useless and that life is a competition to see who can do the best.
I like doing craft projects, but again this is always painfully slow and fraught with mistakes which take all the pleasure away, it can be costly too and does nothing to boost my self esteem. I enjoy looking at craft websites, but I just feel that I can never be good enough or productive enough and that it is all quite pointless. People who craft as a hobby alongside a full time job manage more than me.
At the moment I am doing an activity diary for the Chronic fatigue service where I have to note what I do and my level of symptoms every hour. I feel like I do very little, yet my symptom level is always quite high, which means I need to reduce what I do. There are some things I can’t sacrifice so it means I have to sacrifice the things I do for me or for pleasure, but actually they are the things you are supposed to keep and sacrifice the others, but how ids that possible in the real world. The diary also doesn’t take account of what else is going on, like being interrupted, looking after a sick cat or how many times you climbed the stairs or answered the door etc. Nor does it take into account who else can do things or how disrupted normal routine is with people working at home, school holidays or home schooling and availability of normal paid help.
Is it too much to ask to be able to feel normal and be able to cook a meal for my family or clean my own house or to be able to post my own letter and collect my own prescription. The impact does not just affect me, but these I rely on for help and therefore limits what they can do too.
Is it too much to want my own job and identity and to earn a wage so I don’t feel guilty every time I buy something or need something because it is not my money.