A woman has described how she’s learnt to live with an invisible condition that feels like “having 50 electric shocks a day”.
Lydia Remick, of Newquay, Cornwall, was diagnosed with chronic pain condition fibromyalgia almost eight years ago.
She 42-year-old described how the condition limits her life as often the pain is so bad that she’s forced to sleep all day and night.
She said how she also lives with the constant worry of her body “giving out” whenever she’s out, while the pain can be so excruciating that it feels like being “stabbed in the back”.
Lydia, who was never been able to have children, is now crowdfunding for a mobility scooter which could help her enjoy her life more.
Describing the toll the condition has taken on her everyday life, she said: “Most days I’m alright, some days I’m great, but other days I can hardly move. This is the joy of fibromyalgia.
“The worst days I literally cant get out of bed and it’s a struggle just to get across to the bathroom. It leaves my husband having to do everything and he works full-time and never quite knows what he is coming home to.
“Those are the really bad days and I just try to sleep through them and be as comfortable as I can.
“Then some days I feel like I can come for the world but then as a result I tend to suffer if I do too much on those days.
“There’s days when I will do something but I will pay for it the next day which is really frustrating for both of us.
“It’s the most bizarre condition and thankfully I have some brilliant friends who understand that just because I did something one day doesn’t mean I can do it again, but I have also lost friends because I have had to cancel plans numerous times over the years. “
“I can sleep all day and night and still be tired. Your brain just doesn’t function properly, and that has a really big impact on the rest of my body. My whole body aches.
“My limbs feel heavy and my worst parts are my lower back and my hips. It’s a constant pain. It’s like having fifty electric shocks a day.
“I explain it to people as being always in pain, but the pain varies. It’s like your body is screaming out and there is just no relief from it. Some pain medication takes the edge off but the pain never leaves you. You have to learn to live with it.”
“I also get pains that feel like somebody has stabbed me in the back and pains around my ribs that feel like a knife between my bones and that comes on really suddenly, while anywhere doing anything, which can be really embarrassing.
“People look at you doubled over in pain and think what’s wrong and there is no rhyme or reason to any of it The electric shocks are like your muscles constantly twitching so on days like that you can’t concentrate on anything else.”
Lydia works as a worship coordinator at the Diocese of Truro, and lives in Pentire with her husband David, 52, but said her work and her home life have been impacted by the condition over the years.
“We were in a very fortunate position at the time I started getting symptoms that I didn’t have to work. I had a small craft business at the time which I eventually had to stop doing.
“Then we reached a position where I needed to work but we didn’t know what kind of job I could have and mentally focus on and enjoy without it taking a toll. This was a struggle.”
She said she is lucky to have now found a manager who is supportive and allows for flexible working.
Lydia tried getting around with a mobility scooter during Christmas and as she saw the massive difference it could make to her life, she is now crowdfunding to buy one.