Hi everyone,
As May is Fibromyalgia, M.E and Ehlers-Danlos Syndromes Awareness Month, I thought I would share a wee poem that I have written about living with these chronic health conditions to hopefully help raise some awareness (M.E. is Myalgic encephalomyelitis / chronic fatigue syndrome).
THIS is me………
This is me, the new version of me
Where pain is never ending and the struggle is real
Feeling exhausted before the start of each day
No refreshing sleep ever comes my way
Powering through whilst my body tells me “rest”
The doctor says pace, pace, pace but how can you if you want a life
Striving to do everything to your absolutely best
Energy levels always low you wish you could just
plug yourself in like a mobile phone charging
Joints so unstable that you use a wheelchair now
Losing your voice ‘cause you have no power left
Every joint pops out or creaks, but I’m still standing
Showing up in places with a smile on my face
Learnt to mask from a very young age
only way to get through every single day
Surviving?…no I’m THRIVING as I learn to adjust
Cause I have these illnesses, but they ain’t got me
Staying strong when brain fog is seeping
Essay will get done, I just need another nap
Forty winks later, type type type
Chatting to friends keeps refilling my cup up
Feeling like I can conquer anything now
Not everyone in my life truly gets it
Hard to understand unless you are walking this path
Raising awareness at any opportunity
Research increasing as I fill in another survey
Hard some days to be chronically ill
But the good days keep me positive, my mind a bit clearer
And that is a win I will take any day
No more hiding behind closed doors
Crying for a life I’ve lost ‘cause I still got one
Just a bit different like a new pair of shoes
Wearing them in ’til I get used to them
Sensory overload, stop making that noise
The lights are too bright as I dim them once more
Itchy skin feels like insects are crawling
all over my body, even clothes are sore
Selective with food as my digestion is bad
Upset tum, doubled up in pain
Swallowing is hard as I choke on water
Cramps and spasms go together like chalk and cheese
Tremors make me look like I am freezing on a warm day
Heat pads, tens machine, pills to help
As some kind soul utters exercise is the cure!
This is me, the new version of me
It’s changed me for the better cause I CAN cope
Resilience is growing each step I take
Yes I’m still exhausted, in pain every day
Fibro, M.E. and EDS affect my body
It’s my usual now and that’s okay
Cause I find glimmers of hope in every place
Anxiety is lurking but I keep it at bay
Breathing deep as I inhale a bit more
Calming activities keep me centred
Tomorrow will come, the repeat button pressed
Thanks for reading,
June
