Tuesday, September 15, 2015

Day 15 - A Difficult Decision So A Day Late

Yesterday I was still in mid-crash, the last part is always the kicker. Looking back at what I did, or rather all that I didn't do, was extremely painful.

Do I show what living with ME/CFS is like?  I know if anyone is reading this it would possibly be dismissed as laziness without understanding just why everything is such a monumental effort.  Can I get across the sheer frustration of not being able to do the simplest things one day yet the next I can push myself a little further?

It's hard to put myself up for judgement like this. I see how pathetic I look, I can hear the scorn and snide jokes about "wish I could rest all day".  No you don't, believe me you really don't.

Bullet point your whole day -

Shit, here goes...

• 7 am - Ugh, hate alarms and now the mornings are getting darker I hate them too.  Start "waking up" before I have to physically get up.

• 7:30 - Wake the boys up, prepare breakfast for them. Let the dog out to the garden to read last night's fox pee-mail. Feed the cats.

• 8 am - Despite the drama of the  weekend Eldest still wants to cycle to school so off they go. Shove wash on, taking advice from my fuggy head and achy limbs admit defeat so back to bed before the pain starts.

• 11 am - annoyed I've lost the morning, aware this is not a day to attempt work without making more mistakes than I'm trying to resolve.  Rest hasn't helped. 

• 11:30 - clean part of the bathroom, give up as arms leaden so shower.  It used to make me feel refreshed, now I just feel drowned.

• 12 - rest, yes, even though I've done nothing I'm whacked out. Take dog for run around the park behind our house. He runs, I shuffle along.  Oh look it's raining.

• 1pm - need some food for dinner. Off to the local shop where I promptly forget what I needed. Grab some of the usual suspects and home before anyone sees me.

• 2 pm - after another rest the sicky feeling has dissipated somewhat so make some cream cheese on toast for lunch. Get started on the dinner as I can see how this day is going.

• 3:30 - remember about the wash! Day has gone to rain since this morning so fold it up.

• 4pm - the boys are home, full of their day in school. I love this part of the day where I listen to their stories of who did what, things they learned. 

• 5:30 - dinner is boring, when I can't think clearly I fall back on the old faithful recipes I could make in my sleep but even then I feel the food is tinged with my lack of energy and enthusiasm. It feels like failure.

• 6:45 - auld peacenik here has both sons in the air cadets. Eldest has wanted to be a pilot since he was two and for people like us this is the only way he can achieve that. He wants to fly those big fat supply planes, as long as it's not fighters or drones!  I wonder if he'll get a space or be pushed out by the usual middle-class kids from private school, if it's on enthusiasm and hard work he'll be fine but we know how the UK works.  Youngest is considering engineering, he'd quite like to work for NASA or ESA so I can guess what he'd like to design.  Anyway, I drop them off as I want to feel I've done *something* today.

9:30 - time for pick up. I've been avoiding the computer all day yet my head is being crushed in the vice anyway.  On a plus point my limbs have gone that weird cold, numb way and my back and ribs no longer ache either.

10:30 - boys showered and off to bed.  Me too.  And now the big joke of ME/CFS - I can't sleep.

So that was yesterday.  I've not detailed the pain or unrelenting fatigue as it was in danger of turning into a pity party as it stands. Would someone with ME/CFS look at this as a cop out because I've not described just how frustrating it is not to be able to do normal things or hopefully understand not wanting to focus on every little failure?

The sun is shining today, hoping it will be a better day once this neck ache sorts itself out.

One day I will wake up and all this will be over.  I hope it's soon.

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