Martina
Martina started experiencing pain after a car accident in 1997 and was diagnosed with fibromyalgia ten years later. She finds her local support group incredibly helpful, and over the years she has worked out how to manage her symptoms.
Martina is 46. She is unable to work due to her ill-health. Ethnicity: White Northern Irish
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Martina had a car accident in 1997 and over the following few weeks started to experience a lot of pain in her lower back, legs and hips – like a “dead leg kind of feeling.” Initially her GP thought it was a soft tissue injury that would just take time to heal.
However, over the next five or six years her pains got worse, she found herself being able to do less and less and eventually she had to leave full-time employment. In 2007, Martina was diagnosed with fibromyalgia by a rheumatologist. She describes never having heard of fibromyalgia when she was diagnosed. Although she thought that her GP was helpful at the time, she didn’t feel they knew a lot about the condition. She researched fibromyalgia herself online and came across the NHS website. At this point she said she “…knew that the diagnosis was correct”.
In the years after her diagnosis, she initially only experienced pain, but over time she developed other symptoms like fatigue, sleep problems, irritable bowel syndrome and brain fog. Her symptoms affected her ability to do the things she used to enjoy doing and she described it as “…like a period of mourning because I had lost the life that I really enjoyed”.
In 2011, Martina found a support group for people with fibromyalgia and myalgic encephalomyelitis (ME). She describes it as being one of the greatest things she ever did. She found people who were going through the same things as she was, and she felt that they understood. Martina gradually became more involved with the group and is now the chairperson.
Over time, Martina has worked out what works for her in terms of managing her symptoms. She finds Tai-Chi and other slow movements helpful and says that for her, managing fibromyalgia is “…all about routine”. Over the years, Martina’s sister has been a huge support for her, and she says she would “…be lost without her”.
Martina describes fibromyalgia as a difficult and challenging condition to live with and her advice to other people would be to “...adapt to it”.
For Martina, brain fog is like being on the outside looking in.
For Martina, brain fog is like being on the outside looking in.
Gradually then, as the years went on, I also developed cognitive problems and what they call brain fog, where you feel very confused at times and as if you’re just… you’re witnessing what’s going on, but you’re on the outside looking in, is really the only way I can describe it. Again, it’s a very bouldering kind of symptom because you don’t know how to deal with it. Until you meet other people with those symptoms, you feel like you’re very alone.
Martina inputs a lot in her local support group. She says its “like a substitute for work.”
Martina inputs a lot in her local support group. She says its “like a substitute for work.”
I probably just would have been a lot more productive as a person, you know? Because, I lost a big part of my working life and that in itself makes you feel very low, because you’re not contributing to society as well. So just on that point I wanted to say as well, the support group for me, because I got involved so much with it, is actually like a substitute for work. Because and I think that’s probably why I have stayed with them for so long, not only because they’re making progress in the right direction for patients, but also because it’s helping me day to day with my mental health and my social aspect of this condition, and it’s given me a substitute for a working life.
Martina worries that she would struggle to look after a child.
Martina worries that she would struggle to look after a child.
Yeah, I think to a certain degree it did have a bearing on my family-planning as well, because I felt if I’m this disabled, why should I bring a child into the world that maybe I couldn’t look after or I would struggle to look after as well? And at that point I didn’t know if it was genetic or if there was any genetic connection. You know, was I going to pass it on, or whatever. And just as the years have went on, because the condition has got more and more complicated and harder to manage, you know, your body clock just ticks away and just the opportunity slips away.