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Marie

Age at interview: 57
Age at diagnosis: 53
Brief Outline:

Marie has been treated for giant cell arteritis (GCA), a type of systemic vasculitis. She also has polymyalgia rheumatica (PMR), fibromyalgia, and knee pain. She struggles with fatigue and is finding it hard to reduce her use of steroids.

Background:

Marie lost her job as a result of ill health. She is single and has moved back in with her elderly mum. Marie is passionate about the benefits of singing and hopes to build up work as a singing teacher and researcher. Ethnic background: White Scottish.

More about me...

Marie describes how she was fit and active – “the life and soul of the party.” In addition to her day job, she enjoyed hobbies and performing in bands. She feels frustrated that this was interrupted by illness, which has left her with persistent fatigue, pain, mood swings, and unclear thinking. Marie has come across what she feels are unhelpful staff attitudes and wishes that she had access to an advocacy service to help her negotiate the health and benefits systems.

Around 2016 Marie began to experience blinding headaches. She had difficulty turning her head and developed tingling and weakness in her arms. She was signed off work with stress but then had increasing trouble with moving about and getting out of bed. Marie felt that stress alone could not explain what was happening and asked if she could be tested for autoimmune conditions.

Marie remembers a locum GP suggesting that she had polymyalgia rheumatica (PMR) and giant cell arteritis (GCA), and that this was unusual for someone her age. She started high dose steroids straight away. Marie says this made an amazing difference to her physical symptoms and her mood and that she was “leaping like a gazelle.”

Unfortunately, as Marie reduced the steroids, she felt very unlike herself. She found out from internet forums that the mood swings, crying for no reason and overwhelming fatigue was a more extreme reaction than other people had experienced. Encouraged by members of the forum, Marie asked to be referred for a second opinion about what might be going on. She saw a rheumatologist in a different health board who said that Marie’s level of fatigue and sensitivity to touch suggested she also had a condition called fibromyalgia.

The cumulative impact on Marie’s life of these health issues – in particular the fatigue - has been profound. As she had been in a series of temporary posts at work, she had few rights and lost her job. Financially this led to her losing her house and building up debts. She found it difficult to access state support and was grateful that she could move in with her elderly mum, although she knows this is a temporary solution.

Marie finds it hard to believe things got so bad that she couldn’t see a future. She has found support to move forward from several sources. Antidepressants helped, as did a fatigue management course where she learnt about the importance of pacing herself. Through counselling she was able to make decisions and a plan; as a result she is doing up a campervan and hopes to do more singing teaching.

Although Marie had to put her studies on hold due to her illnesses, she is hoping to continue a master’s degree on the health benefits of singing. As she knows that she feels better and more energetic after singing, she would particularly like to find strategies to get her past the feeling of being too fatigued to do it.

 

Although Marie was under stress, she felt that her symptoms suggested a more physical cause.

Although Marie was under stress, she felt that her symptoms suggested a more physical cause.

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Okay. I was working, I would say round about 2016, 2017, and I kind of noticed that it was a very stressful job. A very, very stressful job. And I had kind of various sort of health things happening, but one of the things that was really, really obvious was very severe, blinding headaches. And I’m not a headachy type of person, never suffered from them, never took, you know, paracetamols and things like that, so it was very unusual for me. But the headaches were such that I could barely turn round [demonstrates turning head to the right] and because it was, sort of stemmed from my shoulders, all the way right up into my forehead. And somewhere about… [smiles] we’re not too sure about the actual symptoms of the headache because I kind of forgot over time, but I’ll explain that later.

So anyway, I was signed off my work because I started to have various tingling and weakened arms? You know? And, and various headaches and things like that, and they signed me off at that point in time with stress.

But then what happened was the headaches became gradually worse until, until the point I was incapacitated and couldn’t actually move for maybe - it seemed like about a minute, but it was probably maybe 30 seconds or something. So it was, for me, quite significant.

But that was also teamed up with my inability to kind of easily get out of my bed, so that gradually got worse. First of all, I just thought it was a sore neck, but then I realised, [does rocking motion] actually I can’t get myself up from the bed. So, I did present myself to the GP, they did some tests, they were continuing to say stress. But eventually my mobility was starting to decrease, and it was quite significant, and things would fall out of my hands. So, it was kind of… this is actually something that’s [laughs] happening to me physically, not just kind of emotionally.

And, but anyway, so the symptoms were gradually getting worse to the point that I actually had to roll off of my bed and crawl to the toilet. And I’m going to include this, it is embarrassing, but sometimes I wouldn’t make it. And that’s how severe the physical symptoms were. And I was just frightened, I thought I was going to end up in a wheelchair. And I, you know, your life spans in front of you - what’s going to happen?

 

With high dose steroids, Marie’s vasculitis headaches were gone. She “felt like leaping like a gazelle.”

With high dose steroids, Marie’s vasculitis headaches were gone. She “felt like leaping like a gazelle.”

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So eventually, I had the diagnosis. I think the main thing the medical profession and my GP surgery were worried about was that it had taken a long time to diagnose, and because of the issues of giant cell arteritis - because of the issues of possible loss of eyesight, and the other one that was mentioned was possible aneurysm – so they wanted to put me on high levels of steroids very quickly. So, I was put on 50 milligrams of steroids along with other types of medication alongside that, calcium, etcetera. But the main worry was they were urging me to go and get the tablets right away, and I did that.

And they did say to me within about 48 hours I would feel wonderful, [laughs] such a rapid difference, and I have to say they were right. The steroids at that point made me feel like leaping like a gazelle, I have to say. I was, I was joyous, the headaches were gone, the physical symptoms were gone, and I felt like Superwoman. And my first kind of rheumatology appointment, I was kind of knocked on the head a bit about that, they said, “You will feel like Superwoman just now, but you probably won’t be feeling like that because we have to wean you off them.”

 

Marie struggled to cope with reducing steroids. Following advice from a wellbeing service, she found antidepressants were “a gamechanger.”

Marie struggled to cope with reducing steroids. Following advice from a wellbeing service, she found antidepressants were “a gamechanger.”

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Yes, I was great when I had all of the steroids, I thought, “Fantastic, this is great, I can maybe grow a singing business,” but then when I started to taper down, for me, the worst thing was that I seemed to have very severe problems in terms of emotional downturn, as well as chronic fatigue, pain, yes, but mine was more so to do with chronic fatigue and mood swings, depression.

And I’ve now read that there, there is kind of steroid psychosis, and I could probably reckon that the medical [laughs] profession and the people I visited probably could say, yep, I definitely suffered from steroid psychosis, because I look back and I say to myself, “Who was that person?” You know, I was reacting in a way that just was totally abnormal for me. And stress - I couldn’t handle well. Emotions - couldn’t handle well. I was crying for no reason at all. So emotionally, I was a different person.

But she did come up with something that I never thought of - and this is why it’s so important to have a range of people talking to you, talking about observations. She said, “What I don’t understand is that you’ve got all this medication, but the thing that’s really affecting you is not being treated, which is the depression, the emotional fallout, the whatever. Has anybody talked about putting you on antidepressants?”

I said, “Well, I do have a wee amitriptyline to try and help with sleep, which is apparently, but it does nothing at all.” They said, “I think you should go back and actually ask for antidepressants,” because that might be the thing that helps me reduce – because I kept having to go up steroids and down steroids and up steroids and down steroids. And it wasn’t to do with pain, it was to do with the fact that I wasn’t coping.

So, I did do that. I went to the GP, and I said, “What about antidepressants?” And I have to say, at that point in time it was a gamechanger. It was a gamechanger because the part that wasn’t being dealt with, the part that was limiting everything was the psychosis of it?

 

Marie is disappointed that she had to ask about monitoring and prevention of steroid side effects.

Marie is disappointed that she had to ask about monitoring and prevention of steroid side effects.

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And, you know, I was discovering things like medication I hadn’t been put on that I should have been on in relation to the steroids. So, I was taking sort of things in, documents in, sort of trying to massage people’s egos [laughs] in order to try and, you know, try and say, “Look, I’ve been told this,” and then that’s fine, I would be given that medication. So, I kind of felt that it was very, very difficult. I was really keen to find out what was happening to me and how to - I didn’t even know if I could get over it, if it would get away - but I was keen to do whatever I needed to do to try and get back to health. And sometimes that was not welcomed. So, I’ll say that.

The other thing was that once I’d been diagnosed, it’s almost like, “Oh there’s your steroids, and away you go.” [Laughs]. So, I would get blood tests sporadically and I kind of felt as if I was pushing the machine myself. And I felt as if at one point, I was actually managing my withdrawal from the steroids myself.

 

Marie has fibromyalgia as well as vasculitis. Mornings feel “like being almost in a coma.”

Marie has fibromyalgia as well as vasculitis. Mornings feel “like being almost in a coma.”

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Like the mornings are a nightmare. I feel as if I’m in a coma. Now that’s the bit that people don’t understand, they’re saying, “For goodness sake, do you have to spend like half the day in your bed?” I made sure the interview was at two o’clock today because it takes me so long to come to. Physically and mentally. And I can hear things going on but it’s like I’m imprisoned, and I can’t rise out of that depth of exhaustion. So, it is like being almost in a coma. So, I’m not moving but I can hear what’s going on. And if somebody comes in to talk to me, I can barely speak. So, it takes me quite a long time to actually wake up.

And the other thing is sometimes I do too much, and it means that then there’s – hell’s coming, yeah? And I know after I’ve done it, I’ve done too many things, I’ve said, “I think I’ve done too much I’m going to suffer for this.” And sure enough, [laughs] the following day you’re walking about like a washed-out rag or sometimes you don’t get out of your bed at all.

 

Vasculitis and fibromyalgia cost Marie her house and her job. She discussed uncertainties about her financial future with a wellbeing service.

Vasculitis and fibromyalgia cost Marie her house and her job. She discussed uncertainties about her financial future with a wellbeing service.

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What it resulted in was I couldn’t return to my housing job, the one that was paying the mortgage. I did do part-time singing teaching but the one that paid the mortgage, I was there on a temporary basis and the income then dried up very, very quickly and then I was on no, no salary at all.

So, I was really impacted financially, couldn’t get any support from the state, had to kind of fight that through courts etcetera to try and get some fairness and some help with the income. And as a result, I had to lose my house. So, I lost my job. I lost my house [laughs]. And I had to return to live with my mum.

And of course, there is the other thing was, I did speak to her about, I have no idea what’s going to happen financially in the future because this is my mum’s house. She’s 90. She’s quite, you know, kind of not well just now. Eventually she’s going to have, she will pass away. She’ll have to sell the house because, obviously, there’s siblings. And I will never get a mortgage again because of the financial situation I found myself in. So, I’ll never get a mortgage again, so where am I going to live? Could I go and rent a property? Well, no, because I got into a sticky situation financially when I had debts and things like that, no I won’t, because I don’t have references.

You know, and so my future in terms of housing, I mean, I have people that say to me, “I don’t know how you’re not stressed out of your box,” because where am I, where am I going to go, you know, if, when that, the inevitable happens. And that’s why the campervan is a solution for that at the moment, because at least when I finish that, maybe in six months’ time, I will have somewhere to live. And a lot of people say, “Oh my goodness, living in a van?”

At this point in time, my views of the important things in life have totally changed. I’m selling all of my stuff, getting rid of all my stuff.

 

Marie’s upset that a doctor called her support group “a bunch of moaners.” She says that, without them, “I don’t think I’d have been here.”

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Marie’s upset that a doctor called her support group “a bunch of moaners.” She says that, without them, “I don’t think I’d have been here.”

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And the other comment was that the forums were just a bunch of moaners [laughs]. Which is an unfortunate comment because, in actual fact, [the forums had given me the most help, understanding and up to date information and it was their advice] that then led me to get the second opinion.

So, you can see your life in front of you, but you still feel as if you’re dealing with it on your own. So therefore, that’s why support systems are really, really important, really important. Whether or not people think that forums are a load of moaners, it helps to vent there where you can’t keep venting at your family or your family don’t understand. You need those systems. The other thing is those people have been through it, they have first-hand experience.

They might not have the same symptoms because my experience is there is a, there’s a whole spectrum of symptoms from one person to the other, but it’s so good when people say, “I’m sorry you feel like that,” or, you know, “Hopefully you’ll be better tomorrow, why don’t you try blah-blah-blah, that worked for me,” you know. So, there’s a huge support network. I think that was the thing that kept me sane.

But I think that also the comment about the support groups being a bunch of moaners, that, that just, that wasn’t right [laughs]. Now, the thing is, I could have sort of written in and said, “Look…” but I thought, do you know, it’s so tiring having to do things about, like that, that I just kind of left it. But I kind of think about it and I get angry, I think, “Do you know, I should have actually taken that further because that wasn’t right.” And I was left gobsmacked, and I was upset as well. I couldn’t even, I couldn’t get the thoughts together to say, “Do you know what? See if it wasn’t that, for that group, I don’t think I’d have been here [laughs], quite honestly.”

 

Marie felt one rheumatologist “really set the tone of, ‘I’m the master and you’re the silly wee girl.’”

Marie felt one rheumatologist “really set the tone of, ‘I’m the master and you’re the silly wee girl.’”

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So, there’s a whole load of things sort of going on there. I’m sorry to say that my experience wasn’t the best. I’d love to say it was, I really would, but I always felt as if I was climbing uphill and up against it, so to speak, and sort of being treated like a naughty child [laughs]. The very first, the very first rheumatologist I went to see – and I can’t remember his name - but I went to see him, and the parking is so horrific at [district general hospital], and eventually I had to park on the pavement, blocking the footway. I’d been there half an hour early, still couldn’t get parked, and I was, I think I was a couple of minutes late. And I came in and he gave me into trouble like I was a naughty child and I, it was not helpful, it really kind of set the tone of, “I’m the master and you’re the silly wee girl.” I felt like a silly wee girl.

And the other thing that happened was, I’d already started to have symptoms from steroids, like hacks on my hands, I couldn’t fasten my bra and I found it hard to fasten my trousers and zip things up because the hacks were so sore, and apparently that’s a side effect. And I said to him, “I’ve got all of these hacks,” and he just brushed me off and he said to me, “You’re far too early in the game to have, to have hacks.” He wouldn’t even look at them.

They were evident, I had plasters over them, they were evident, but they were impacting on my ability to do things. Even to write, I couldn’t write, I couldn’t, you know? And I just felt as if, “I’m not that happy about that.” And of course, I went outside and the nurses who were there said, “He’s had a bad day,” and I said, “Well, that shouldn’t really be impacting upon me,” and I said, “I really didn’t like the way he…” he wasn’t listening to me, he was telling me, he had a very arrogant manner about him.

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