One of our wonderful Testifying Commissioners, Lis writes about life with Fibromyalgia…
First catch the flu, then get a sunburn all over.
Next put on really tight-fitting clothes and throw yourself down the stairs.
Stay awake for 36 hours straight.
Randomly put your fingers and toes wet into a plug socket.
Consume beans and prunes and suffer the consequences.
Bang your head ten times against the wall.
Put your jaw in a vice and pull hard.
Sit in a car and have someone crash into the back of you.
Tie cinder blocks to your feet, throw a couple of wet woollen blankets round your shoulders and walk around.
Turn on a heater and a fan, both on high, then alternately stand in front of them.
Spin around as fast as you can and then stop dead.
Throw sand in your eyes then blink really fast while listening as long as you can to a whistling kettle boil.
Walk around all day every day on the verge of tears so no one can see – because pretending to be okay is easier than having to explain to everyone why you are not.
Try to fill in a disability form whilst coping with this daily. Try to explain the day to day different types of pain to a GP. Try to answer the OT who asks you, “What do YOU think you need to help?” Try telling your friend sorry for cancelling that night out for the forth time. Try not to lose your temper when someone says, “you don’t look ill”.
Well, it never occurred to me that one day I’d wake up sick and never get better.
We need to shout up for the people who have symptoms that aren’t visible to others and are able to function, even while in extreme pain. We need to high five the people who fight a daily battle others cannot see. We need to applaud the people who hide their illness well and don’t seem sick. We need to appreciate the people who feel like they are making too big a deal out of their illness because, “it could be much worse”. Shout loud for that person who says, “sorry I’m not the person I used to be”.
The change to our lives leaves us needing the care of loved ones and professionals. Having to have someone care for you is degrading when you can’t shower alone. There’s no privacy when you can’t get off the toilet without help. You’ve no independence when you can’t turn the page of a book. There’s no joy when you can’t enjoy a walk in the park on a sunny day or a snowball fight in the cold.
No one can be there inside your head to tell you on dark painful nights not to feel isolated, alone, angry and in despair.
It is a crushing feeling when you cannot afford to make the changes that might make those days easier.
Does this relate to Poverty Truth…? Yes. This becomes financial, emotional, lifestyle, relative poverty and poverty of isolation.
So please don’t judge me because I do not look sick.