At the start of the week I commented to the lady who drives me back & forth to work that this term doesn’t feel as long as last. After a week of migraines, popped out shoulders, & cold limbs, I take it all back. I’m not wholly sure how I’m going to drag my wobbly aching carcass through another week of this. EDS has once again knocked me flat on my arse. My current days are going something like this:
Mr Geek wakes me up by stroking my back, then helping me stretch out & rubbing my feet & legs until I can tolerate using the crutches to get to the loo. Then he gets out my clothes and helps me get dressed (all the while discreetly checking that I’m not going to topple over from a limb giving out or just plain potsy fainting).
Right now, mornings are hard. I wake up feeling like I’ve been hit by a bus & am making it to work not through guts & determination, but because of Mr Geek physically moving me through my morning routine & fear of losing my job. Even the idea of cutting my hours puts me on edge – despite the potential for feeling physically better and actually getting to spend some time with my offspring, not being full time makes me more dispensable & if Mr Geek stops working from home, there’ll be zero buffer against people talking at me (no rest potential there – may as well be herding kids).
Sat on the side of the bed, Mr Geek brushes my hair into a sock bun whilst I attempt to plaster my face in enough self-tan moisturiser, concealer, eyeliner, and contour the living crap out of it until it submits to looking human. Final touches – my headscarves to protect my hair from breaking, because although it’s looking healthy again, it starts matting & breaking the minute I leave it out.
Mr Geek saves the morning yet again here surrounding me with my baskets of morning drugs & make up. He doesn’t leave me until everything is in reach.
Down the world’s slowest roller coaster to my chariot awaiting me at the bottom of the stairs. It’s a work day, so it’s The Beast. The powerchair is necessary as 8 hours+ of self propelling is arm rippingly painful.
It’s weird, the powerchair is built specifically for me, but I’ve come to resent it. I’m passive in it. In utter contrast, Leonardo (my manual) is an extension of me.
As I get into the kitchen, Mr Geek hands me coffee & hot milky weetabix which perks me up enough to kiss the kids goodbye and wheel myself into the taxi and off to work.
I don’t want to be leaving the house right now. I want to crawl back into bed & rest my bones that won’t hold me up. I want to cuddle up to Mr Geek and giggle over my snap crackle and popping joints when he cuddles too tight. I want to sleep. But, instead I put on a big smile & say good morning in my Oscar winning performance as girl who is coping.
Off to work. Bones rattling. Pain levels increasing. The chair is strapped down in the van, but I am not. I wobble freely over the hill wincing at the cattle. We’re both headed for vets soon.
8.15am – 4.30pm
Holy hell in a handbasket. There’s a blur of 100+ students, marking, worrying, patrolling of corridors. They ground me & remind me that my little whirlpool of pain isn’t the whole world. There’s other shit going on & if I don’t vacate my pity party right now, I have a shit-tonne of kids to dissapoint. And that’s not going to happen. They couldn’t give 2 hoots if I’m on my feet, in a chair, doubled over in agony, they need entertaining & their little sponge minds filled with the stuff I’ve got. Life goes on.
There’s also a rising tang of pain that exudes from my hips and hands and across my body. Painkillers and work don’t mix well, so let’s suck it up for a few more hours…
Home. Kiss kids.
Lay on sofa. Oh God my head / joints / back / [fill in the blank].
This is probably the most restful hour of sleep of the day. It’s delicious.
Wake up to Mr Geek trying to talk to me and waving food in my general direction.
Then straight to bed & set the bed incline to sat up with raised feet whilst blogging / watching TV until the evening drugs kick in enough to let me pass out again.
To sleep. Per chance to dream.
I wish I could sleep.
It’s a miserable way of looking at my days, but it’s my reality during term times and it becomes a harsher reality as the term goes on. This half term is 7 weeks, as is the next one. Most holidays I’ll keep working from home to stay on top of things, but this half term I’m planning to rest.
I’m not wholly sure what the long term goal is now. Right now, what we’re doing is just about physically surviving the week, then treating every weekend like it were a tiny holiday (and getting mightily frustrated if time is ‘wasted’ not making the most of our down time. Ironic eh?).