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 wake up (can you call it waking up when it doesn’t feel like you’ve slept?) at around 9am. I lie still assessing the pain levels in my limbs and torso. Worrying the tingling sensation in my legs won’t subside when I venture out of bed. I slowly move to a sitting position, wincing in pain as my ribs make it known they’re not happy. I tug the duvet off me, slowly swing my feet out of bed and drop them to the floor, sitting, waiting for my body to adjust to being upright; to minimise the risk of being overwhelmed with dizziness on standing. I gather the essentials and begin the trek down the stairs, slowly, literally taking one step at a time holding onto the rail.
I get my breakfast, and take my morning painkillers. Slowly making 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 as I’m unable to sit at my desk for long. After about an hour (sometimes less) I stop. 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 studying, other times something less intense!
Come 4pm I’m starting to feel very fatigued and have another rest, just listening to what’s going on around me. Decisions of what to have for dinner can be difficult, asometimes I sit out in the kitchen watching, occasionally helping make the dinner. I eat dinner on the sofa and take some painkillers with it.
By 7pm it’s time to curl up on the sofa in my pyjamas. I might play a simple board game or card game with my family, or 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 in last year’s post it’s great to be able to see I’ve made progress even though these past few months have felt incredibly tough. I’m doing most basic tasks independently of my parents now and 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.”
Remember I’m spending today dressed as a Princess to raise money for Invest in ME a small charity funding vital biomedical research into M.E. If you can afford to sponsor me you can donate via text by texting MEPC92 followed by the amount you want to donate (£1, £2, £3, £4, £5 or £10) to 70070 (e.g. MEPC92 £4 to 70070) or head over to my JustGiving page:http://www.justgiving.com/PrincessClareW If you cannot afford to donate please share my story and help spread awareness. Every donation and share will make a difference. Thank You!