Morag

Age at interview: 48

Age at diagnosis: 46

Brief Outline:

Morag developed pains in her body and other symptoms about four or five years ago. She was diagnosed with fibromyalgia by her supportive GP later on. She tries to stay active with walking her dog, cycling with an electric bike and other exercises.

Background:

Morag is 48. She lives with her husband and child together. She had to retire early as a police officer. Ethnicity: White Scottish

More about me...

About four or five years ago, Morag participated in a charity cycle race and felt that something was not right. Previously a very active person who enjoyed running and long-distance cycling, Morag subsequently developed pains in her body, persistent tiredness, headaches, as well as memory and sleep problems. Some healthcare professionals thought she was depressed because they could not find the cause of her symptoms. However, Morag had experienced depression in the past and knew that this was something different. Around two years later she saw a new GP, who thought that she could have fibromyalgia. This was confirmed by a hospital consultant shortly afterwards. Morag has also other conditions including asthma and sleep apnoea.

In the past, Morag has tried to manage her symptoms through attending physiotherapy, cognitive behavioral therapy and a two-week rehabilitation programme, which focused on her individual needs and included various exercises and alternative treatments. This was part of the occupational health support offered by her previous employer. Currently, Morag takes various medication for her different symptoms. She attends weekly exercise sessions at a hydrotherapy pool. Although she pays for these privately, she finds them beneficial for keeping active. Morag sees her GP for periodic monitoring. Being able to see the same GP who is supportive, non-judgmental and understanding makes a big difference to her.

Morag is frustrated that some healthcare professionals question people’s symptoms and think that fibromyalgia is not a real condition. She also feels that there is no real understanding of the scale of the impact of fibromyalgia on people’s lives. Morag believes that people with fibromyalgia would benefit from a quicker and better-coordinated approach to diagnosis. Before her own diagnosis, she found the process of being referred to various departments and needing to repeat her story to different healthcare professionals ‘soul-destroying’.

Fibromyalgia has affected Morag’s whole life. She had to retire early from the police force. This had a financial impact and caused her to miss out on her career, which she enjoyed. Further, she finds it more difficult to do certain activities, such as baking with her granddaughter or cleaning the house. Morag has gained weight because of her reduced ability to exercise, which she feels unhappy about. Morag is aware that she needs to be careful not to push herself over her limits, which she finds hard to accept.

Morag is determined not “to give in”. She wants to stay active and has recently bought an electric bike to enable her to cycle again. Walking her dog and doing crafts help Morag to cope better during difficult times. She also volunteers at a local hospice. While she finds it difficult to depend on other people, Morag appreciates the ongoing support of her husband and close friends. She values how they could see that something was wrong from even before her diagnosis, and always believed her.

Morag’s advice to other people in a similar situation is to “Never give up, and if nobody’s listening, just keep going until they do listen.”

Morag suddenly started to feel unwell at the start of a charity bike race

About four to five years ago I was very active, I used to cycle 50 miles three or four times a week. One of the weeks we decided, my friend and I, we’d cycle to [a distant central city]. So we cycled down to [that central city] one weekend, came back, and then the following week we had a 100 mile charity cycle. And before we started it, I’d driven down and I just said, “I don’t feel right, there’s something not right,” and I couldn’t get my hands over the handlebars properly. And then after that, I was just floored and I don’t… I didn’t have any reason why I was floored.

And then I was getting pains, I struggled to get out of bed, my husband used to have to pull me out of bed because I couldn’t physically get up. And I was just tired all the time, I would be on – I would, I worked, so I had to do shifts, and I was just really struggling. Really struggling with it. And I was forgetting stuff, I was really forgetful. And at first they thought it was just a virus, that was fine. Then they checked and everything to see if it was lupus, if it was anything like that, and all the checks were coming back negative, negative. And then, at first, I was getting frustrated because people were saying, “Are you sure?” and it was as if to say, well, I wouldn’t lie about it. I know that I’m not right, and because we had the death of [my husband’s] daughter, they were saying, “You’re depressed.” I says, “I’m not depressed.” And I’d been there before because we couldn’t have our own family and I did get depressed after that and I was on medication and everything, and it wasn’t that feeling, and I knew it wasn’t that feeling. I tried to walk to the shop and I couldn’t even get to the shop. And I was saying it’s not… I said, “It’s more frustration than depression because nobody’s listening to me.” It was as if to say, I know my body, I know that my body’s not right.

Morag said she finally got her diagnosis from a new GP who joined her local practice.

Then eventually I went, I got a new GP, well, I didn’t move GPs, a new GP started at the surgery and she kind of… she totally understood where I was coming from, you know? And, I kept saying to her, “I’m not – people think I’m depressed and I’m not.” I am, don’t get me wrong, I was grieving, but I’d been there, so I just… I couldn’t get it out of my head. And it was just the fact that I had to keep repeating, repeating, repeating, but nobody sort of knew. And then she did, she said, “I think you might have…” well, she says, “We’ll rule everything else out and if it’s not, it’s definitely fibromyalgia,” and at the same time I was going to the chest clinic and she, the consultant there, was of the same opinion. So that was the diagnosis.

Morag overheard her boss describing her as a “malingerer”

It was so, I didn’t have… you know, it’s as if… she was just really good. She could see it herself, and I think in a way, I wanted somebody to see it, rather than me trying to explain it and looking like there was nothing wrong with me. You know? I had a sergeant when I was in the office through at my station, and she didn’t realise I was in one day and she said, “Well, if it wasn’t for malingerers I would have a full shift,” and I thought, “She’s talking about me.” And I just walked out and I went, “Morning,” and it was her that was embarrassed. Then she had the cheek to email me one day and say, “Oh, I think I might have it,” and I thought, [laughs] “I don’t want to know.” And I wouldn’t be like that normally, but it was just because of the way that she treated me. I thought, no way. You can’t be saying something like that and then coming back to me, asking for advice, so. That kind of annoyed me a bit.

Morag enjoys volunteering, but can’t commit to set days because of her fibromyalgia.

Oh, I hate it. Hate it. Hate the fact that I’m not quite independent and I hate the fact that I’ve got to depend on other people. And I mean, for all the goodwill in the world, I mean, now that they think I’m retired, think I can… “Oh, you’ve got all day to yourself,” but I haven’t because it takes me longer to do stuff that never used to take minutes. And I try… I mean, now I kind of volunteer at the hospice, local hospice, but again, I can’t say to them that I’ll do a certain day because some days I can’t – I just wouldn’t be able to do it. Other days I’ll say, if they’re short, I just cover when they’re short, which is fine. And that way I feel like I’m putting something back, but it’s just so frustrating. And my hands are sore constantly.

I’ve always said, once I retire I personally don’t think… when you’re in, like, police, fire brigade, whatever, I know that you’re retiring young but you’ve still got life in you so you want to do something, but I don’t think you should be taking jobs off other people. I think there’s enough to do… like, like the hospice relies on a lot of volunteers, like, they’ve got the café that’s open and that relies on it’s just volunteers. If there’s no volunteers, it doesn’t open. So there’s stuff out there that you can do because you’re still getting a decent pay, so why take another job to give, take off somebody else that might need it? That’s just me.