Listen to ME
Category : MY BLOG
***ME/ CFS FIBROMYALGIA awareness post***
Normally you should wake up yawning, refreshed and ready for the day.
I have only woken up because the teeth gritting pain brought me out of sleep.
As I woke I clamped my teeth together as to breathe was like breathing with swords smashing through my ribs. Any movement to my back was like molten rocks hurling into my spine. This is on top of the pounding headache, eye socket pain and the insistent throbbing agony in every joint, nerve ending and muscle.
So I held my breath to try and stop the pain, frozen to the spot, unable to move an inch.
Eventually you have to change position so you have to breathe again, grit your teeth and shuffle inch by inch to reach for the pain killers.
Should be a story by an 80 year old, right?
This is how I have spent most of my 40’s.
People not affected by this condition don’t really care, I know I wouldn’t. But the scary fact is this disease is becoming a pandemic far more common than MS and breast cancer. Most people drag themselves through their lives just thinking they are tired or have a bit of arthritis, not even diagnosed properly.
Luckily we are just getting a multi million pound investment into this incurable condition for bio medical research.
Amazingly Jen Brea has swept the Film industry gathering nearly every award going for her documentary UNREST a documentary on filming ME sufferers from her own ME ridden bed. This will be out this month.
So society may be coming round slowly, but spare a thought if you know someone with this condition.
See if they need some fresh bread or milk. Understand that on some days they won’t answer the phone. Just sitting with them not talking, watching a film is worth more than gold. See if they need help cleaning themselves, drop by with some bed wipes, magazines, treats or a cooked dinner. This is what we need but would be too mortified to ask.
A high percentage of us are lonely, scared of the future and are fighting to stay positive every waking hour. But because we are young, stubborn pride kicks in.
My dream would be for warden controlled facilities for chronic illness sufferers. Cool flats to live in meeting places when you have a good day and a carer cleaning the place. I would move in, definitely.
I am having to move again now because I am too remote and do not see people for weeks apart from paid carers/ cleaners/helpers. Yet again I have to say goodbye to a house I adore as I am too lonely.
Most sufferers oddly enough are driven, successful, hard working people struck down after illness or trauma.
We are brave, we smile through the pain, multi symptoms and the slaughter of indescribable exhaustion. We say yes to events even though physically we are suffering incredibly, just to ‘people please’ and appear ‘normal’.
As like old people we suffer alone. We are left alone with no food, help or support for weeks, months or even years. I have to pay for all of my help.
That is all my money goes on, apart from pyjamas!
We have to fight to prove we are ill with the local health authority to get benefits because we can’t work.
Our illness still silently holds the stigma of ‘yuppie flu’. So we are forced in our weakened states to make an appeal against the local authorities proving our condition to get PIP and other monetary help. Five of my friends have to take on the authorities to prove they are ill. They have to create their case for court in weakened states. Currently they are on £90 a week to survive.
Would we have to fight the authorities if we had severe asthma, cancer or severe arthritis? The more known conditions? The simple word is NO.
Tell your MP’s people. Let them take on your fight!
We lose, like I did, our homes, career, partners, independence and lifestyle.
GP’s avoid us as they take no measures to understand the illness. We become the experts, doctors aren’t worth the effort of getting dressed and sitting in front of crying your heart out asking for help.
They offer us no hope, they stuff us with more pain killers. They see us as hypochondriacs.
A GP in Devon told me I had no disability and needed to get a grip it wasn’t like I had broken a leg or something. I should have complained about her, but we are easy pickings as we don’t have the energy to fight.
Friends disappear as they don’t understand the condition or just don’t need the hassle.
Your world changes into a gold fish bowl where you spend every waking hour of your youthful life in bed or house bound searching for the next box set to take your mind off of your non existent life.
We live as ghosts.
Times need to change. Help someone you know who suffers. Spread awareness.
Share this page.
You or a loved one WILL be affected by this condition.
I have typed this very slowly as my fingers and brain are working like a 90 year old.
I took the time to type it, please take the time to read it.
Thank you x