Almost seven years after my diagnosis, and years of symptoms before that, I think I’m now fairly adept at playing the MS Game.
I know when it’s best to:
Wake up – 5am – brain at fullest function, emails, print things off, brainstorm Uni stuff. Coffee helps.
Shower – straight after work (I know, weird, huh?) but working as a builder, it’s best to wait until after work as I just can’t handle two showers in a day. I shove my hair under a woolly hat and hope for the best (and some customers call me ‘lad’, gah).
Cook – a moveable feast – whenever I have the energy. Freezer bags of pre-cooked food are my friend for bad days when I can do nothing more than microwave. On really bad days, well …
Work – has changed so much over the years. Thank goodness my job is flexible and can be adjusted to how I’m feeling, plus working with a group of friends is balm for the soul, compared to the bullying I put up with in my previous job.
Study – five minutes here, ten there. Anywhere and everywhere. Boss drooling in Screwfix? Whip book out, highlighter in hand. Boss talking for hours with the plumber/electrician/plasterer? Same. As friends, we go back a very long way and he knows I pull my weight (lol).
Do Housework – on an ‘As And When’ Basis. Cordless vacuum, ignore the dust. Keep hold of that leaflet for cleaning services for when I win the lottery.
LIve – the tricky one. I no longer travel alone. I rarely socialize. Once, twice a month – it’s a lot of effort. Home is my safe space. Meetings are planned for the morning and taxis are a godsend. It’s the afternoons and evenings that are the problem.
Handle Relapses – the worst of all worlds, especially living alone. All of the above is scaled back to The Sofa.
Hold a Pity-Party – definitely in the wee small hours. I’m plagued by MS insomnia at the moment and seem to feel every single symptom, amplified. My legs crawl with neuropathic pain, I twitch, my hands move too fast or too slow. It’s a waking nightmare.
I think when you have MS, you live with endless body-consciousness – we know exactly what we are capable of (or not) on a day-to-day basis. I still smile when someone says, ‘yeah, cool, next Thursday?
I have absolutely no idea how next Thursday is going to be …
A straight to the point and straight to the heart post! MS insomnia and the tricks it plays with your mind at 3am is the worst and it seems to rule how everything else fits (or falls) into place. Massively affects my everyday life and symptoms.
Thank you! It sure does – I feel all over the place at the moment and am really hoping it’ll pass soon. X
A brilliant post….very relevant in that, I can identify with what is a good coping mechanism for me where I’m at on my MS journey. I can remember on Chris Evans’s morning radio show, a few years ago, the story of how a listener had planned how the house should be decorated during their insomnia…..I guess that’s the first step and yes ABRACADABRA it’s done…….h’mmmmm I admit it’s only ‘in your dreams’.
Jonny
Thanks Jonny!! We truck along and take it day by day 🙂 X
I’ve been working hard to pace myself and discover what works for me. Historically I just push through on all things, but that’s working less well for me and my family now. I appreciate your writing on this as I have been trying to find the tricks that work for me!
I was exactly the same! Trying to do everything I could do before and it just didn’t work and nothing got done. It really is all about the pacing and recognising what you can do and when. And, not beating yourself up about it! X