‘If my support can help one person, then it is worth it”
By Maurice Garvey
WHEN she was diagnosed with Fibromyalgia 10 years ago, Emma Grace’s reaction was likely the same as someone reading this article.
“I hadn’t a clue what the doctor was talking about,” said Emma (28).
“I had to go out and buy books. It was really difficult to navigate. Genuinely, I thought I would die.”
Emma, Kara and Tracy at the fundraiser
Fibromyalgia is a disorder characterised by widespread musculoskeletal pain, leading to extreme bouts of fatigue, sleep, memory and mood issues.
There is no cure for the rare illness, which has had a debilitating impact on the Ballyfermot woman’s life, forcing her to return from Canada in 2013 and cancel any longterm life plans.
“I tried to be independent and moved abroad for a year and a half, but had to come back. I had been able to manage it up to that point, but it became too much.
“You do your best to keep active, mild yoga and pilates in the house, but it affects life hugely. It’s really one day at a time with no longterm plans, as there is a good chance you won’t go through with them.
“It affects mostly women. A lot of the people we support can’t work. It can be difficult to even get out of bed. Even when I’m out, I could be laid up for three days afterwards.”
Getting worse
Although doctors say it isn’t degenerative, Emma fears it is “definitely getting worse” despite trying all possible treatments, including ketamine infusions and a cannabis based oil when she was in Amsterdam.
“It helped, but I’m not in the game of breaking the law. I know a lot of girls take CBD products like balms and chocolates. It would be fantastic if that Bill (Cannabis for Medicinal Use Regulation) came in, not just for myself, but other people with illnesses it could support.”
Due to the lack of knowledge surrounding the disorder, Emma established a Fibromyalgia Support Ireland group four years ago.
“It started with four members, but it is now up to 500 members and the page has 1,000 likes,” said Emma.
“There is not enough awareness or support for Fibromyalgia. It is a good Facebook group, we’ve had some private meetings. I’m constantly on it to give support, and Lisa will step in on days when I’m not feeling well. If it can help one person, then it is worth it.”
