There were days (not so very long ago) where I would jump out of bed at 6.30am, jump into the shower & get ready for work.
I’d be out of the door by 7 & at my desk by 8am ready to conquer the day.
Today 5 years later, it regularly takes me those 2 hours just to get out of bed.. NO I am not lazy & enjoying the comfort of a warm duvet..
I am cracking my joints into an acceptable position to enable the movement (very painful I might add) to get me out of the position my body has locked itself into overnight.
Jumping into a shower has turned into a battle – One made all the more difficult by not actually having a shower in my house… I have just one of the over the bath mixer tap things – So actually climbing into the bathtub is a mission in itself.
The shower is supposed to be comforting, invigorating & refreshing but during the preamble & the actual event its no longer fun… its painful, worrying, difficult & just so much of a drain, it’s almost impossible not to just lay down afterwards..
Anyhoo – I’ve done it… Now I’m on my bed, in a towel talking to you (dragon speech software is bloody amazing & has saved me from the black dog that circles sometimes).
It will take all my effort to now get up & get dressed.. I am supposed to see a friend today, one I have arranged to meet for a coffee at least 5 times have had to cancel (spoonies know why).
My hands are on fire & my legs are still feeling like they have been kicked…
It feels like the shower didn’t set me off on a great day sadly.
She will understand (maybe) if I cancel again.. BUT they all do for a while & then you stop getting calls.
By now most people have heard about fibromyalgia; they know someone who’s been diagnosed, they’ve seen the Facebook posts.
People know it’s painful. People know it can be debilitating, BUT it’s not a death sentence & doesn’t warrant the same “Gasp” moment as other illnesses do… (not that we want sympathy… its empathy thats missing)… which leads to people falling back into the habit of – *You don’t look ill so I treat you as if you’re fine*.
Which sounds good until you see your friends walking in front of you at a leisurely pace, but you are concentrating on the pain in your feet & legs so much you are held back.. Or when people see you out somewhere & assume you’re having a fabulous time BUT you know that hour of interaction is going to cost you 3 days of NO SPOONS & you are already feeling the depression waft over you…
When my life fell apart 4-5 years ago thanks to this awful illness, little did I know it meant I would suffer & the world would go on…Friends would leave, family would TRY to understand but wouldn’t & my home would be my prison on most days..
Today is not a great day & I started out so positive 😦