As I’ve done for M.E. Awareness Day the past two years, today I’m going to share what it’s like to be me for the day.
Up until a few weeks ago this would have been a much more positive, less symptomatic account but unfortunately after receiving the news that my Nan had passed away my health took a nosedive so this account isn’t what I was expecting to be writing:
I wake feeling unrefreshed, after about 9 hours sleep. My body feels heavy and almost everywhere hurts. I slowly sit up and wait a few moments before attempting to get out of bed; too fast and I feel faint. I gather together the things I expect I’ll need downstairs for the day: clothes, my phone, a book, a blanket and often a cuddly toy friend into a bag and make my way downstairs leaning heavily on the hand rail for support.
I get my own breakfast, standing leaning on the worktop for support, then I get washed and dressed with the aid of a helping hand or parent to dress my lower half. After that I get on with a few hours study, currently this is done from the sofa when possible. I take regular breaks within this period as my concentration doesn’t last for that entire time.
I get lunch in the same way as I got breakfast, before taking an hour or so rest, normally watching the Australian soaps on TV. I often spend the rest of the afternoon doing something which takes little energy but is productive; this could be putting photos in a scrapbook, planting seeds, blogging or knitting, it all depends on how I feel.
Evenings are my worst time, my parents will cook me dinner which is eaten on the sofa, I’ll get into my pyjamas often requiring the help of one of my parents to change my bottom half. I’ll lay on the sofa reading a book, listening to music or play a game of cards with one of my parents.
Come ten o’clock it’s time to head back up the stairs to bed. This is often a struggle, my legs are incredibly heavy and painful so lifting my feet onto each step is incredibly difficult. For this reason one of my parents has to help me up the stairs. I get into bed, write in my journal before trying to get comfortable and letting sleep 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.
As always it’s taking some time to get used to needing so much help again. It’s been a while since I’ve needed help getting showered and dressed and I am forever grateful to my parents for helping me out at times like this. I’m hoping things will pick up in the coming weeks and months, but for now I just need to cope with how things are and balance my activity levels in order to get myself improving again.
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 PCJW78 followed by the amount you want to donate (£1, £2, £3, £4, £5 or £10) to 70070 (e.g. PCJW78 £4 to 70070) or head over to my JustGiving page: http://www.justgiving.com/PrincessClare If you cannot afford to donate please share my story and help spread awareness. Every donation and share will make a difference. Thank You!