Saturday, 15 September 2018

A day in the life of a fibro warrior

Before I even open my eyes the pain hits.
Before my brain acknowledges the pressure sensors in my bladder the pain hits.
Before I move a single muscle....see where I'm going?

I lie in bed in agony with my eyes shut dreading the first move I need to make. 
The first move every day is the one for my medication tower.  So with gritted teeth I prop myself up on my screaming shoulder to shovel my morning meds into me. Gone are the days where I used to have to take them one by one, for fear of them getting stuck,  these days I have the skill to swallow 8 pills at once, some skill eh?!

After the effort of pill taking I collapse back on my pillow trying really hard not to groan and moan. This morning it was 6.30 so I really don't want to wake my partner as he will have a long enough day as it is.
The next battle is the one of bladder vs pain killers. Which one will win?
Every day I cross my fingers that it will be the pills because if not it will be the agonising hobble to the bathroom with full on accompanying sound track of moans and groans. 
The bathroom visit feels like an extreme sport. 
Today I held out for 45mintes, woohoo!  At least my meds have started to kick in before I have to put my sore feet on the floor.

Then it's back to bed.

Already exhausted.

Every day the same but every day I'm still surprised by how shit I feel. 
I mean how can EVERYTHING hurt?!
Makes no sense to my nurse brain.
On nights where I've slept well I blame that for some of the pain (from lying in one place for a while longer than I can normally tolerate), but then nights like last night when I had to take pain killers in the middle of the night, it puts pay to that theory. 
I really do feel sorry for my fiance trying to sleep next to me as I must change position every hour, often more frequently if I'm honest.   I'm lucky he still wants to marry me lol (next month! Woohoo!)

By 8.30 I was grateful for my CBD (Cannbidiol) and was at least able to nod off again.

Sadly I was unable to move enough to get up with my darling son.  This is the same 99% of the time. Cue Mummy Guilt.

It seems like my day is ruled by the clock as by 10.30 I'm thinking I could take another dose of pain killers... starting to think how to plan the rest if the days doses as I've now had 2 out of my 4 doses and it's not even midday.
I just about manage get out of bed to say goodbye to my boys as they head out for a while.
What do I do? 
Collapse back into bed. 
The pain is easing by now but I'm exhausted.... thinking about what i might be able to do today....

It's now 12.30. I've been sat on my gym ball for a while doing some stretches and now feel able to move.

No shower or hair wash today, oh no no no. That would put me back to bed for sure.  Plus I cringe at the thought of the water hitting my skin.  It's like hundreds of needles stabbing me. 
Today I'm going with my staple Dry Shampoo and baby wipe combo! 
There's a gift idea for you carers lol
Oh AND CHOCOLATE don't forget chocolate 😂
So half way through the day and I've just got dressed (tracksuit bottoms,  inside out knickers, stretchy seamless bra top and inside out t shirt), and opened my curtains. In that order you'll be pleased to know.  Wouldn't want to scare the neighbours.
Having a quick lie down as a bit knackered from the getting clean and dressed malarky.  Had another dose of CBD and wondering what I might manage this afternoon.  The sun is shining....a drive out in the car maybe,  walking is not going to happen today so it's my scooter or stay in the car.

Anyway I think you get my point by now. You don't need me to give you a blow by blow account of the rest of the day.

The point I'm trying to make is that our pain is not your normal pain.  Remember we've more Substance P in our body's so Fibro suffers feel 10x more pain than the norm.
It's also global,  it's not a case of having a sore back,  or a sore hip.  It's a case of having a sore back,  painful hips,  shoulders,  arms,  wrists,  neck,  toes,  ankles, soles of bloody FEET ffs,  you get the picture.
Add to that our fatigue.
We are not just tired.  This illness is EXHAUSTING.
I didn't sleep particularly badly (for me) either last night, thank you CBD ❤. However with fibro we don't get to the big deep restorative sleep level so we wake up exhausted.
This exhaustion only serves to amplify the pain. 
Of course there's more too it than pain and fatigue but I've kept you long enough.
A big thank you for taking the time to read this far. 

If you're a warrior then this will resonate with you I'm sure.  Share this so maybe your friends and family will understand.
If you LOVE a warrior I hope this will give you some insight, a million thanks to you for caring enough to read this blog.  It means A LOT

Much love and gentle hugs to all