If you suffer from, or believe you suffer from, myelopathy, you can get in touch with Ms Reeves at reevesmargaret-06@hotmail.co.uk
I busted my face and I’ve knocked teeth out. After all that, I then started having continence problems.
“I just knew something wasn’t right, the falls were getting worse and I even found it difficult to get out of bed and from getting from the bed to the bathroom. It felt like I was walking on springs.” After demanding a second opinion before her true diagnosis last year, Ms Reeves had to travel to England and it was only then that the possibility of myelopathy was explained to her.
Reflecting on the lack of support that was available in Northern Ireland, Ms Reeves’ voice began to wobble as the years of not knowing what was wrong with her came flooding back.
“My life is spent in different departments of the hospital on a weekly basis,” she said.
“My heart is broke. There is no support here for me. In Northern Ireland, out of all the people I have seen, nobody has talked to me about the red flag symptoms and nobody has explained to me what myelopathy is.
“I’m living in fear and I’m scared to let the physios touch me. I sat in the house all winter and I won’t go out when it rains in case I fall.”
Praising the help she has received from spinal injury charities the Spine Injury Association and Back Up, which are both based in England, Ms Reeves added that the limited support Back Up can provide again proves the lack of knowledge of myelopathy in Northern Ireland.
It was hoped that the charity could provide her with a fellow sufferer to help her through her experience. However, they could not find anyone here with the same condition.
“There is no support here. We need to talk about myelopathy. If I was living in England I would have been treated quicker.
“I don’t see a future for myself because it has been left to deteriorate for so long. I’ve isolated myself away from people because I’m angry and I have hatred in me... I have lost trust in everybody.”
❝ I don’t see a future because it has been left to deteriorate so long... I’ve lost trust in everybody
Ms Reeves added that the only help she is receiving is coming from a counsellor and a physiotherapist, both of whom she is seeing privately.
“I want to create awareness of myelopathy, make sure doctors know that it’s out there and act on it early and I want to know if anybody else has it,” she said.
“I’m stuck in a spider’s web and I’m trying to get out of it. The hospitals have had me in their grips for 20-odd years.
“I want a new three-way communication between the patient, hospitals and GPs.”
The Belfast Telegraph contacted the Belfast Health Trust regarding Ms Reeves’ concerns but had not received a response at the time of going to print.