This week, I had intended to post an article about the impact of the coalition government’s controversial welfare reforms (an issue I know is very important to many readers of this blog). For various reasons, however, (not least the amount of research required) it simply hasn’t been possible to get that blog post written, so I’m afraid you’ll have to settle for a general update post instead. I’ll try to have a more informative article ready to post in the not too distant future.
In my last post I mentioned the major duel-carriage way being built across greenbelt right next to my home. Last week I received a letter informing residents that while earthworks are proceeding (to raise the road over the railway and canal) the machinery will be operating fourteen hour days six days a week from now till late September.
This is likely to be a major problem for me as in order to try and manage my symptoms, I need several hours each day of ‘total rest’ (lying flat in a dark, silent room with no mental, physical or emotional stimulation). Without this, my symptoms fluctuate wildly but even wearing an eyemask and earplugs ‘total rest’ is utterly impossible when forty tonne dump-trucks vibrate the whole building for forteen hours straight.
So far, one week in, I’m coping better than I thought I might do, but the effects of over-exertion tend to be cumulative. For the next few months, I will just have to snatch whatever rest I can, whenever I can, and hope to get enough to stave off potential relapse.
Thankfully, not every day is as bad as others. On Wednesday, the noise from machines reached such a pitch that it felt like my head was being crushed. All I could do the entire day was curl up in a ball, clutching my head and wait for the day to end. Having to keep the wndows closed on a hot stuffy, day, didn’t particularly help matters either. Today in contrast, despite beautiful weather, the workmen are absent and I’m making the most of the blissful silence, grateful for a whole weekend to recover before Monday’s fresh onslaught.
The result of this unpredictability is that I’m managing far less in a week than in recent months. Where last month I could study/write for an hour a day, four or five days a week, I’m struggling now to do twenty minutes.
When you live with a chronic illness though, you learn to accept that there are very many obstacles outside of your control. This is simply one of them. So I’ll approach this setback with the same mentality I approach all others, and focus on doing the little I can do, whenever I can do it knowing that this too shall pass. Experience has shown that even in the most limited circumstances, little achievements add up.
This past week , I’ve been pulling back from many normal activities anyway to ensure I’m as healthy as possible when my mum comes to visit for several days next week. With access to transport and the help of someone who knows more about me and my condition than agency carers could ever learn in their once-a-day visits, it is a chance for me to do some of the things I can’t do without help.
I am particularly looking forward to getting my haircut. I am starting to look a bit like a sheep. Another inch of growth and my hair will be long enough to scrape back in a hairband, at which point I lose the ability to wash or brush it by myself.
I haven’t seen my mum since Easter as she lives overseas so I can’t wait to see her. I know that, like always, I will end up doing far too much but payback is sometimes worth it for the chance to do something ‘normal’ at least for a little while.
On a far less consequential note, I have just finished watching the DVD box set of ‘Lost’ (a TV show about survivors of a plane crash). When the first season was broadcast in 2005, I had just returned to work for a few hours a week after a recent relapse had left me housebound.
My life at the time consisted of work, food and sleep, too ill between shifts even to read or watch television. Despite rave reviews from colleagues and housemates, I missed every one of the opening episodes, finally catching enough midseason, to just start getting into it when a second relapse struck, and i was too ill to watch TV again for several years.
During that time, I moved from shared accommodation to a place of my own, so I could have the care and adaptations that would stabilise my illness. Too ill to keep in touch with former housemates, I completely forgot ‘Lost’ even existed until an advert flashed up in my email inbox last year and I decided to buy it for no other reason than to take a trip down memory lane.
To be honest, after the first two seasons, the plot grew so weird that I struggled to follow it. When you suffer from brainfog, the twists and turns of time travel, flashbacks and mysterious smoke-monsters are hardly ideal. It didn’t really matter though that I couldn’t follow all of it. What matters is that nine years ago I was too ill to watch it, and now I have. Sometimes it really is the smallest of victories…