Tuesday 18 May 2021

What my bad days look like

A subscriber suggested, if possible, that I write on one of my bad days to give a glimpse into what one looks like. Unfortunately on my bad days I'm unable to pick up and write a blog post; I'm not even able to write a whole blog post on a good day as I can only write paragraphs here and there as that's how I've adapted to be able to blog.

I can have bad days for a variety of reasons. It could be due to 'payback' or Post Exertion Malaise which is a classic symptom of M.E and is a exacerbation of symptoms often brought on following an activity, even minor activities such having a bath or going out for a short walk in my wheelchair with my PA. A bad day may also be the result of me having a migraine or a seizure for example or if I'm having a bad day with pain levels or if I've had a night of broken sleep; again sleep problems are very common for people like myself with M.E. 

On my bad days it's a bit like trying to hold two positive magnets together with the resistance when trying to connect them together. This is what my whole body as well as my mind feels like on a bad day. My mind and body resist moving, thinking and doing. Everything is a struggle everything I try and do worsens my symptoms and leaves me feeling worse and worse the more I try to do things. This often makes me feel like I'm trapped in a mind and body that I have no control over.

My bad days are often spent laid in a darkened room with minimal noise. Audiobooks are a bit of a life-line; especially on my bad days. I need to be in the dark and quiet as noise and light along with other senses like the weight of my duvet are physically painful. I'm also in a lot of pain which I feel in every part of my body. My joints and muscles and nerves all cause me pain; sometimes even my strongest pain relief or other medications don't fully relieve my pain. I can also feel so exhausted that I want to cry but despite my high levels of fatigue and exhaustion sleep doesn't help.

On my bad days I rely more on the help of my family and PA to help me with some of the most basic of everyday tasks stripping me of my independence which can be difficult especially as a young adult.

One of the big challenges is trying to recover from a bad day, so more often than not I don't really have a singular bad 'day' it can go on for days sometimes a week or so depending on the reason for what has caused the 'bad day'.

Model Kate Stanforth with painted wire on half her face. Text reads "trapped living with a condition that limits every aspect of your life".