Bed days involve DVDs if I’m lucky and a hell of a lot of Purple Time. I might make it downstairs once to stock up on snacks. Each evening I always make sure there’s enough to drink in my bedroom incase I’m not able to get downstairs the next day and there’s no one home to bring me one. My family (or slaves if you like) tend to deliver my dinner/tea on a tray.
I’m not able to use my iPad or my phone very much/at all on these days. The cognitive function required to do something as simple as send a short text message just isn’t there.
It makes me sad sometimes to have to eat in bed by myself. But needs must. I can’t manage to sit downstairs and the ‘hustle and bustle’ of having just one person in the room is incredibly draining. Bed days are solitary. They can also be quite sad, but not often because I’m a right battle axe!
Next time you go up and down the stairs think about what that takes. You need good balance. You need enough momentum behind you to lift each leg – to push off and make the next step. If you’ve been mostly immobile for a fair while you won’t be fit either. This plays its part too.
In the Summer there are Garden Bed Days. This outdoor furniture is probably the best thing I’ve ever bought.
Sometimes I can’t help but think it’s like my life is in two halves. The one you see and the one you don’t.
After sharing my recent milestone with you (Finally!) it became clear to me that some people thought that it was to become a common occurrence; something I could do on a daily/weekly/monthly basis. I’m afraid you’re wrong. I might manage it once or twice a year if things go according to plan. I will be over the moon if I manage to do it as regularly as that!
So many of the milestones I share with you are one-offs. Lovely but rare. When I tell people this, they often seem a little bit confused. “So what do you actually do all day?!” they ask, while trying not to frown in bewilderment, when I tell them I don’t watch much television and so haven’t caught up with the latest soap opera or drama series.
Well my friends, the answer is it depends. I can usually tell as soon as I wake up what kind of day it’s going to be. A bed day, a pj day or a dressed day! Regardless, I am ill everyday. What do you do on your days off sick? It’s not fun and games is it.
I’ve split this post into four separate ones to help those like me to read and digest it at their own pace. I just wanted to give you an insight into my days, for those who are wondering.
|I have such a complex skincare routine these days…
I’ve tried and failed to list the few things I do everyday without fail. Nothing is set in stone, except for the fact that I wake up! I can’t always manage the basics: washing, dressing, brushing your teeth, eating (although I’m always able to power through eventually and eat something in spite of the nausea!) I get out of bed everyday. Even if it’s just to nip to the loo. There are far fewer bed days than there used to be. I’ve come a long way.
Before you wrinkle your nose and think I’m a little greb for telling you I can’t always wash my face or brush my teeth, never mind shower, I want you to do something for me.
Next time you lean over the sink to splash your face with water see if you can feel the muscles in the back of your calves becoming tighter, and your quadriceps straining as you bend to lower your face to the sink. See if you can feel the pull of your back muscles as you move your arms to and from the sink to your face. Try doing this when your body is screaming at you as if you’ve just ran the London marathon. With a hangover and the flu. No doubt you close your eyes to wash your face. Imagine doing this when you feel off balance. It’s both risky and disorientating. Such a simple task requires a certain amount of energy. An amount I don’t always have. Face wipes were invented for days like these! Showers are often replaced by a good old baby wipe or too aswell. Such is life.
Brushing your teeth is perhaps even more problematic. It’s quite a vigorous exercise! I have an electric toothbrush in one of the bathrooms now (more than one bathroom, how ra!) This helps a lot! My arm still has to be raised to my mouth though. This makes the aching worse and not surprisingly so as my limbs weigh a tonne! Ask my sister. It seems I’ve lost all muscle tone and so am now a dead weight. Lifting my own limbs isn’t always easy – hence why I might drag my feet when I’m walking sometimes.
Washing your face and cleaning your teeth are luxuries my friends!
I still have my food cut up for me on the whole but I haven’t had to be spoon fed in AGES which is wonderful. My evening meal is always cooked for me and, depending on what kind of day it is, so too is my lunch but I can sort myself out with a cereal bar for breakfast (Michelin star chef in the making!) I can use the toaster (for toast obviously) and the oven to cook fish fingers (or some other nutritious midday snack) some days. I have a cooking-timer-thingy that ensures I don’t forget about the oven and I’m now very good at remembering to out oven gloves on. Hooray!
M.E. myself and I is 2 years old today!
For someone who doesn’t do very much it seems I still have an awful lot to say!
My blog is solely about my ill health and so it really can’t be all that exciting or captivating. Yet it has such a healthy following and for that I am baffled/astounded/proud/flattered/grateful. I’m hoping I’ll become better at replying to your comments/tweets/messages… It’s about time really isn’t it!
Thank you for taking the time and energy to read M.E. myself and I and ultimately for coming along for the ride as I navigate my way through the maze that is chronic illness. I hope I have helped you understand this complex illness in some way – that’s what this was all about in the first place. (I reasoned with myself that I couldn’t possibly expect people to understand if I wasn’t honest with them.) Or perhaps the blog makes you feel less alone as you plod along on your own journey to better health. Safety in numbers and all that.
I hope today is a nice one for you.