As is now tradition on International ME Awareness Day in this post I shall share what it’s like to live a day in my life, I’m writing it with a pounding headache so you’ll have to forgive any mistakes!
I wake at around 8:30am, lying assessing the pain levels for the day. I slowly peel back the duvet and move my legs to the floor so I’m sitting on the edge of the bed, there I stay for a few minutes making sure I don’t get dizzy, before putting my slippers on and gathering a few bits ready to make my way down the stairs, slowly but steadily holding onto the rail.I get my breakfast, and take my morning painkillers. Then make my way back up the stairs again to get some clothes for the day. I have a short rest before heading to the bathroom to get washed and dressed. I then sit with a cup of tea for half hour or so.I get my study materials out ready to commence a short study period. Spreading them out across the sofa and on a little table as I’m unable to sit at my desk for long. After about two hours (sometimes less) I stop, having had some rest breaks in between. I get my lunch and have a bit of a rest before watching an hour of TV. Another rest follows, before doing another activity; sometimes knitting, or something else not as intense as study, occasionally though it will be another short study session.Come 4pm I’m starting to feel fatigued and have another rest, before getting up to help cook dinner, either by sitting reading the recipe off or sitting on my perching stool by the hob actually helping with the cooking.By 7pm it’s time to curl up on the sofa in my pyjamas. I might watch a single TV show. I have a hot drink and come 10pm I get ready for bed, take some painkillers and begin the journey up the wooden hill (stairs) to bed. I write in my journal, then find the most comfortable position and wait for sleep to claim me.
As with previous years post this is just an average day. Some days are worse, some are better. I adjust my activity levels and the aids I use accordingly. But this is the amount of activity I can handle with no negative effects on my health. Anything more and I pay the next day.
Looking back on last year’s post it’s great to be able to see I’ve made progress, the stairs aren’t as much of an everyday struggle as they were 12 months ago. Life still isn’t easy but it’s good to look back and see how far I’ve come.
Some things haven’t changed since last time though, so I shall quote from my post back then:
“…when people visit I always put on a brave face, an act so they don’t see just how bad the ME is. I don’t do this for my sake, but to protect them from the truth. There are some who see the ‘real’ me now but it’s taken a few years for me to ‘drop the act’ for them. And if they themselves are having troubles or stresses the ‘act’ of being better than I am and not letting on how bad I really am comes back to protect them. I don’t want to add to their worries.”