A day where there are no appointments to attend, no family or friends visiting or to be visited so no need to put on an act to protect them from seeing how bad the ME actually is, just a standard day in my life at the moment.
I wake up feeling unrefreshed, like I haven't slept, no matter how long I have been asleep for. My body feels heavy, stiff and painful as I slowly stretch and assess the pain level I've got to cope with. I struggle to move to get out of bed, I want to get up but it's not that easy. I have to slowly sit up or else get dizzy. Gradually move my legs round to the edge of the bed and place my feet on the floor. I gingerly stand up, wondering if my legs will support my weight, grabbing onto the bed, bedside cabinet or other piece of furniture for support if they don't. Once standing, which can take a couple of attempts, I slowly make my way towards the dreaded stairs, using walls and door frames to hold onto for support if I'm unsteady (often the case!).This is a 'normal' day for me at the moment. Some days are worse so I do less and others are better so I do slightly more - whether that be going out to a doctor's appointment or having a friend or family member over. But 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.
At the top of the stairs a decision has to be made - to 'walk' down them using the hand rail and wall for support or to 'bottom shuffle'. This depends on how unsteady my legs are, the weaker they feel the more likely I am to 'bottom shuffle' down the stairs still holding onto the hand rail!
I reach the bottom by whatever means (normally avoid falling which is always a positive!) and have a short rest. The tackle the task of getting breakfast. This involves as few trips from fridge to worktop, microwave to worktop etc. as possible. I also tend to use a perching stool whilst getting breakfast which is normally instant hot oat cereal made with rice drink instead of milk, as it's a fairly healthy quick breakfast and doesn't take much energy to chew. I take some painkillers, and a supplement with that.
I have a cup of green tea after breakfast whilst resting. Then embark on a trip upstairs to get some clothes (why I don't bring them down when I get up I don't know!!) This takes a while and involves a rest when I reach my room and another one when I get back downstairs. Then I have help getting changed - I can't bend my legs enough to get socks, trousers etc. on myself so have to have my Mum help.
By this time it is normally 11am, I either rest or do a little study - I can only study for around 20-30 minutes at a time. Even then I'll end up distracted after 10 minutes so will have a few minutes break!! Whichever I do I tend to be semi-lying on the sofa. I might also take a slow 'walk' on my crutches down the garden to our pond where I'll check on the fish, feed them etc.
Lunchtime! I'll move from my position on the sofa to the kitchen to get some lunch, just a sandwich. I'll have another cup of tea but I don't make these as I can't lift the kettle. If I do make a hot drink it's using a hot water dispenser but that's only normally used when there's no one home as carrying a hot drink through the house can be rather difficult!
In the afternoon I'll watch a bit of tv (normally just after lunch), do a little more study and most days I have an hour's nap. I take more painkillers just to keep the edge of my pain.
Evenings are my worst time of day, all my energy has been used during the day and I'm running on empty. Dinner will be made for me, and come 6pm most nights I am ready to be in my pjs and bed. However because the bathroom is downstairs I don't tend to do this unless feeling really very unwell. Instead I get in my pjs (with help from my Mum) and collapse on the sofa with a spare duvet and pillow. The pain and fatigue at this point in the day is really bad.
At around 10:30/11pm I make my way upstairs to bed with one of my parents following up behind me keeping me steady if necessary. Once in bed I often find it difficult to find a comfy position to lay in, so spend a while unable to sleep trying to find the least painful position before falling asleep.
I'm hoping this blog post makes sense, I haven't really reviewed it properly so apologies for any mistakes!!
OH and just as an extra bit about my life right now: I got my last assignment back...and scored 95%!! More details on that and how the studying is going are on my other blog: http://lifewithmedoingadegree.blogspot.co.uk/
Bye for now, as always let me know your thoughts and comments either on twitter @SmilingClare or add a comment to this post and I'll reply when I'm able!