There seems to be a middle ground to this illness, I am discovering along the way. There are days when it is simply a fight for survival and days when it is possible to wake up and actually do something – like take a walk. Help prepare a meal. See a friend (the shock!). While they may be few, this latter type of day gives me the strength to endure the former.
However, one thing no one warned me about (possibly because when you are healthy, unless you know someone with long term illness, it isn’t a conversation you normally would have) are the majority of days. The not sick enough to go to hospital, but too ill and pain riddled to get out of the house, days. The endless days of inside or lying outside on a lilo to get the Vit. D everyone agrees is vital.
And… it is shocking to admit, the sheer and utter boredom of it all. Yes, part of my brain is occupied with holding on and making sure I can focus, but the rest? Even with brain fog, it can be mind-numbingly boring to be isolated and inside all the time. Social isolation and depression and weakness and all kinds of things were on the brochure when I got ill. But for some reason, boredom was not.
Is it wrong to go from fully active person to couch bound, and be bored? I sometimes wonder if perhaps I should just be grateful to be breathing. But just breathing isn’t enough – that’s existence, not living.
Before my systems went into complete autonomic meltdown with postural orthostatic tachycardia syndrome (POTS) to complement the CFS/ME that was already playing the fiddle with my insides, I could distract myself with endless hours of TV. Unfortunately, that is no longer the case, as my eyes can’t take the screen for hours. So, I have discovered some new ways to keep myself from going insane (with some limited success, my friends would say).
If you too find that keeping the dream of ‘life’ alive is difficult with illness or any other disability, here are some things I never thought I’d get back to as an adult, or new things I have come to enjoy.
- Jigsaw puzzles. In an attempt to keep my mind active,I dived into jigsaw puzzles. I wanted to be able to identify patterns and feel artistic at the same time. I did these for a few years, until my concentration wasn’t up to the task. It did, however, provide me with great fun and some artwork I still have hung on my walls. Below is a 2000 piece puzzle I’ve hung in the house.
2. Crossword puzzles and sudoku. As the cognitive dysfunction slowly mired me in brain fog and mental confusion, I started needing my loved ones to read contracts or insurance papers and even simply instructions on labels. In an effort to push this back, I bought lots of crossword and sudoku puzzles. Words and numbers have never seemed quite so difficult! I ended up giving up on sudoku as it just gave me headaches – literally! I do keep trying to stem the tide of losing my words with crosswords.
3. Crochet and knitting. My fingers are no longer very dexterous due to the difficulty with blood supply to extremities. I tend to drop things, cut myself or grate holes in my hands when I try to grate up carrots. I was banned from the kitchen for quite some time… I use crocheting and knitting to help keep my fingers moving and the blood flowing. It is also very peaceful and like a meditation, to just sit and crochet without having to think too clearly.
The rug shown is actually made for a queen sized bed and while slightly oversized, works well in winter.
4. On days I can think clearly, I write in my journal, or put together very short pieces of flash fiction for Instagram. It is a lot of fun trying to find words for just one or two small panels. While it is no longer novel sized, it is still writing and I love it.
5. Ah, now back in time to junior school days. I also colour-in these days. It keeps me feeling artistic but also helps me learn to use my fine motor skills again. Unfortunately, I still colour outside the lines when my fingers go their own independent way,
but it is a start. This is a small piece and certainly is no where near complete, but I do enjoy the books of scenes, like shown, rather than ones with vague shapes and mandalas.
6. Friends. Whether it is on Facebook or Instagram I love to interact with you. While I can’t actually spend much time there (screens of any sort do mess with my eyes), connections are so vital to us all, and especially when you spend almost every day at home (a Drs appt is considered an outing!), I do love to see messages.
I do try to spend time with those who are physically close by, but the feeling of overwhelm when with people, from visual and aural stimuli and the mental energy used to follow conversations, makes living, breathing people exhausting! 🙂
With limited energy, difficulty concentrating or focusing, finding ways to keep motivated and fulfilled each day can be hard. There are days of sheer frustration, boredom and rage. When I want to be off doing things like I used to. However, some of these simple things can and do help.
What helps you to find fulfilment in changed circumstances? How do you fill your days? What tricks do you have to keep the loneliness and boredom at bay?
I’d love to hear from you.