“What do you do all day?”

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I am often asked “What do you do all day to keep yourself occupied?”

Well, I don’t actually have as much free time as many might think, because every little task takes me longer than a healthy person and necessitates frequent rests; the simplest of tasks can be exhausting for me. For example: I have a shower, then need a rest, I get dressed then need a rest, I make and eat breakfast then need a rest, I wash up then need a rest….you get the picture. So just the daily basics take up a lot of my time!

I do have a wonderful lady who comes and cleans my home for two hours every fortnight, but everything else I do myself. I cook my own meals, washing, ironing, washing up dishes etc. It’s surprising how much time all of these things take up when you have to pace yourself!

Having limited mobility and energy does drastically reduce what I am able to do and having been at home ill for three and half years now I do still struggle with how to occupy my time without using up what little energy I have.

There may be some people who are content with watching TV all day, but surely not for over three years! I would feel the grey matter trickling out through my ears if I were to spend all day, every day watching the likes of Jeremy Kyle and Bargain Hunt! I also still really struggle with just relaxing and watching TV; I still have the constant urge to be “doing something”.

I’m not saying that I don’t watch TV, as I probably do still watch more than the average person, but it is far from my only occupation! I enjoy listening to the radio, in particular Radio 2; I think I’m old enough to be able to admit that without flinching! I enjoy the wide range of music, presenters, guests and topical debates and it takes less energy from me than reading a book can do.

Concentration can be a real difficulty for me, so I actually read less now than I did before I was ill and had a busier life! This is where word games on my phone are useful, they are mentally stimulating, but I can dip in and out of them, so no need for long stretches of concentration. It’s the same with writing this blog. I type up ideas as and when they come to mind, then add to them bit by bit when I am able. It usually takes several stints over about a week to put together each post. Maybe I need to try and make them shorter?

Wildlife is a great passion of mine, so watching and photographing birds, animals and insects in my garden helps to keep my sanity. Most weeks I also count the birds visiting my garden, as a citizen scientist for the British Trust of Ornithology.

Spending about 80% of my time at home it brings me great joy to watch the wildlife out of my window. It doesn’t completely make up for not being able to go out and lead a normal life, but it certainly helps. When life has dealt you a bad hand you have to make the best of it and find joy wherever you can.

Another thing that has helped me to keep sane is teaching myself to crochet, through books and YouTube videos. Now that I’ve mastered the basics I can make many things whilst sat in front of the TV, arms supported on a pillow and without needing too much concentration. Thankfully crochet is very forgiving, so when my concentration is severely lacking and I make mistakes it is easily undone and done again correctly. It has been wonderful to discover something productive I can do that doesn’t tire me out! I usually have several different projects on the go, with varying degrees of complexity. So I can choose to work on what my brain and hands can cope with on any given day.

I am one of the lucky ones that is able to go out and socialise, but not as often as I would like and I do have to pace myself carefully. At best I can manage two outings a week, leaving the days either side for rest. The majority of the time it is lunch out with “A” for a couple of hours, occasionally it will be to the cinema or theatre. Going anywhere new to me or somewhere very busy or needing a bit more walking than I’m used to, or stairs, takes a lot more energy out of me. These trips are planned even more carefully and necessitate more rest days before and after.

Although going out of the house takes up a lot of my energy and can take me days to recover from, I am very grateful that I am able to do it; there are many that simply cannot!

There are some days I am too ill to even watch TV, listen to the radio, read a book or do some simple crocheting. It might be because I have done too much and pushed myself too hard, it might be because my body is using what little energy I have on fighting something as simple as a cold or there might be no rhyme or reason to it at all. ME/CFS is a fluctuating condition, so symptoms can change from month to month, week to week, even hour to hour. Those days are really tough and are spent mostly in bed. Often I’ll be too tired to do anything but lie in bed with my eyes closed, although I’m unable to sleep. It can be really hard to eat well and drink sufficient fluids on those days. Once I’ve used my energy to get up to go to the toilet I’ve often only got enough energy to fall back into bed again!

Thankfully over the years I have got better at pacing myself, so I don’t have as many of these days as I used to, but it’s not always in my control. I try to have meals made and in the freezer, so that when I have these really bad days a meal can simply be defrosted and reheated in the microwave.

It’s funny that the question people ask is “What do you do all day?” but never “Do you get lonely?” The hardest thing for me being home the majority of the time is the loneliness, the lack of human contact! But I shall save discussing that for another day, as I have waffled on for far too long already.

For those of you reading this who are in a similar situation to me, I would love to hear what things you have found to help occupy your time, keep your brain working when possible and keep insanity at bay! Please do leave a comment.

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