Fibromyalgia

The wee support group I was talking to you about there, I think it’s come back to me, we all had fibro, admin, the whole lot of us and we’re getting it very, very hard to keep it together, so we put a request out to see what family members that understand it, fibro, I don’t think there’s anybody out there can understand it unless they’ve actually gone through it, but have family experience of it. So we got six, seven on board and the wee group is running now and helping so many, and also helping the health service as well you know.

So that would be why we would be educating the OTs and they come along to the monthly meeting now, the, fibro is a disability and, they come to the monthly meetings, not every, not every monthly meeting, we’ll invite them and then we’ll invite the consultants, the GPs, the nurses, support workers, right across the whole field we will, we will you know, it’s us that’s educating them you know.

And with the support group, how did you find out about the support group?

I found out about on, in the local paper, and, it was started up from a girl who god, had ME and fibro, and she had to give up her career, she had to give up with two doctors in it as well, that had to give up their practice, and I just went out, I just felt as if, and the type as well “If you don’t feel like getting dressed come in your pyjamas and come with your quilt”, and that’s exactly what happened, there’s that many sick people there you know, and quite unusual, and I just looked around and I goes, “My god, something has to be done here, something has to be done”.

So that was my first, now I don’t go out every week, in fact it’s been quite a while from I was out because we have it online and you can watch it online you know, but it, the amount, like it’s gone from, from 220 to 1,700 members of people, and you see all this about, you’re constantly seeing this about, “Doctors want me to get out”, doctor that wouldn’t accept fibro, doctor this, it’s terrible, it’s absolutely terrible you know, it shouldn’t be happening.

And how do you feel about this support you know, from your group?

Absolutely fantastic. I think it is absolutely brilliant and I’d be a very, very dark place without it.

And having that support group has been really necessary and helpful for me because you know, if I’m having a day where things are just overwhelming or I’m tried of explaining something, I can go to those people and just you know, it’s an outlet and just saying you know, “Oh, for goodness sake, this has happened again”, and they get it, and we all do support and care about each other and you know, yeah, we’re there in the bad times but we also celebrate the successes that we’ve had, so it can be, “Oh you know, I’ve been trying this treatment”, or you know, “This type of massage or something and it’s been really helpful for me”. So that for me has been hugely helpful.

And having this kind of support of people you know, who have you know, who have fibromyalgia and as you say, understand without you needing to explain really, what does it mean to you to have this kind of support in your life?

I don’t think I’d cope without it in all honesty, I think before I met the people at the, the self-management course I felt so alone. And it wasn’t even that you know, I, I knew people, a couple of people in my life who have fibromyalgia, but they’re not, they weren’t people that I was especially close to or felt like I, or you know, they were also dealing with a lot at the time or you know, I didn’t want to go to them and be like, “Here’s all of my problems as well as what you’re dealing with”.

So I think before that point I was really struggling with getting my head around it and yeah, I, but there were a lot of bad mental health days I think before I met those people. So yeah, actually having, having met people in person and having discussions about what it’s like yeah, a complete life saver for me, it’s really necessary.

But they, they help ME and fibro patients. If someone has a question, “Where is the best rheumatologist? Who did you go and see?” you know, “Who is the best private person to go and see?” you know that way she started off on her own and she now has a group of volunteers helping her and there is a, a well renowned doctor in, I think it’s in [a big city] who was on our last monthly Zoom meeting, because we obviously can’t meet up anymore we have monthly Zoom meetings, and he was included and, he’s a doctor for infectious diseases and control and it’s a long, long title. But we got a lot of really good information from him, which, who is a doctor that you would have to pay privately to see and we got to ask him questions for free you know. So setting things like that up for us, I mean it’s you know, you can’t put a price on that, and that’s a charity so you know, fundraising.

What kind of difference has that group made to you?

It’s given me the support that I need, information that I need. I mean I can ask one person, “Does anybody have this as, a symptom of fibro?” and they’ll say, “Yes”, or, “No”, and I’ll know, “Okay, that’s not my fibro, that’s something else”, or they’ll, or I’ll ask, “Does anybody know a good place to go for a sports massage or ?” anything really and someone will have the answer, and if they don’t have the answer they’ll go and find it.

They offer support, when you’re just having a really bad pain day they understand and you go on and you put a post on and the amount of the support that floods in just lets you know that you’re not on your own. Even though you may be one of the younger members you’re not on your own because my mum is a member as well but she isn’t as active on the Facebook page. She did come to the monthly meetings with me, we went together, and that was something that helped us both because a lot of the things my mum didn’t understand about fibromyalgia either.

I don’t really have, much of a support I’d say, in terms of people that understand what I’m going through apart from, some people that I’ve met on the internet [smiles]. So I do have a group of, women that I speak to regularly, that have HS and, some of them have fibro as well so it’s good to speak to people that have, have the same, issues that I have, because they understand more. I just don’t think anybody really understands if they don’t have it [smiles], so.

Can you tell me a bit about this group, of you know, women you, how did you get in contact with them and is it just online or, yeah?

Yeah, it is just online for the time being because obviously we can’t meet.  But I started an Instagram page, for my HS when, just before Christmas I think and I, it was just really to probably make myself feel better at first but it’s sort of grown into this, page that I get in contact with, other people. We’re now, I’m now in this group of women that, one of the ladies is a, has a business that has to do with HS, because I have a job that’s beneficial for that, I help her out, we have another woman who’s been on TV with it who’s got quite a good following, and yeah, we have a really good sort of group. And yeah, it is online for the time being.

There is the one lady that lives near me actually, so we’ll probably meet up when we can [laughs], but obviously now it’s all online or on the phone [laughs].

What does it mean to you to have you know, this support?

Oh, it means so much [smiles] like because, well not, when, we’re quite positive with each other, we don’t, it’s not like a pity party of women with conditions [laughs] that we just like moan all day, we’re really good at like keeping our spirits up and you know, helping each other with information. Yeah, well if someone’s read, read like a journal or an article or something then we’ll pass it on or if someone’s heard of something, that helps we’ll pass on that information. It’s good, it is really good, positive, uplifting group of people.

I don’t think it would help me. I would happily go and listen to other people’s… [shaking head] but talking about my condition isn’t going to help me feel better about it. It’s not going to cure it, talking about it just reminds me that I have this and my coping mechanism is to not think about it and not talk about it. But, I could go to these groups but as a listener as opposed to talking about me. Is that selfish? Hmm…

Sometimes it’s quite nice to talk about something without it becoming a discussion or a competition. You’ve got a sore arm, oh, well, both my arms are sore. How sore are yours? Well, they’re sore. Oh, well, mine are worse. Now, that to me is not, that’s not a positive way to deal with something. I think if it’s… if someone just wants to talk about… I’m a good listener, you know, I’m quite happy to sit and listen to people.

I’m not saying that I’m perfect because I sometimes do interrupt, I think, “Oh, I’ll chip this one in,” but I would go and listen to other people talking and be quite happy to do that. But for myself, I just don’t think I would gain anything, talking about it to other people.

I think it would just endorse the fact for me, something that I’m trying to live with… I would hate to think, to go along to one of these groups and think, “I’m dealing with this really well, right I’ve got this, I’ve got this, I’ve got this. I’m taking this medication, that’s fine. I’m able to go to work, I’m able to…” blah, blah, blah, and then go along and hear somebody saying, “Oh, well, I’ve got this and oh I don’t go out anymore, and then oh and I can’t do this and I can’t do that. I’m in this pain, I’m in that pain.”

I don’t want negative stuff, I don’t want to be sitting there, thinking, “Oh my goodness, am I taking my illness too lightly?” Should I be thinking, “Oh my goodness, I’m really ill, I maybe shouldn’t be going to work, I maybe, I maybe should be lying in my bed in the morning, maybe getting up at lunchtime and maybe not even doing the gardening anymore because it’s too sore.” Does that make sense? I mean I… yeah.

Because although the Facebook groups are sometimes good it, often it’s very much a case of like my horse is bigger than your horse, my problems are bigger than yours rather than someone, so I would go on there and say, “I’ve had this particular sensation here, has anyone else experienced it, and if so, what did you do to ease it?” and some people would say, “Try this, this, this”, a lot of things, suggested were things like Kratom which obviously is illegal in the UK, and then often CBD as well is also mentioned, and then other people would comment being like, “Oh, I’ve had that sensation everywhere for this many years, so I therefore, you don’t have to worry about anything because I’m worse than you are”, and it always, it felt like it’s a competition and it shouldn’t ever be seen as a competition for who’s worse than who, it should be what it says on the tin, a support group.

So I had to sort of step away from a few of them because there was this weird competition of people feeling better than others because they’re in their opinion in a worse place than others. And I think because I, and at the time was still working, they were like, “Well obviously not that bad because she’s still got a job”, and not taking into consideration that I live in [the city] and I live in, like I live in a flat share but I live in [the city], I have to work to pay the rent, yeah.

I think after a while I kind of sat there and I thought, ‘Maybe I’m not actually that ill.’  And I know that my fibromyalgia is quite mild compared to everyone else, but I was sitting there, going, the fact that seeing other people’s experiences is making me feel that I don’t deserve to take part in these things, I think made me feel a little, I think that made me feel worse. So I thought, you know what, I’m not getting anything out of these forums, it’s not having a significant impact on my sort of mental health, but it's not helping me. So I thought, you know what, it’s not something that I feel would be beneficial to me, so I kind of came out of that in terms. I know it really helps some people, but for me, it’s just not… I just didn’t feel like I… I wouldn’t say I didn’t fit in, [shaking head] so no one was specifically there saying, ‘No, you don’t belong here,’ but I just felt, you know what, I don’t think me sharing anything is going to help anyone massively.

And then a similar sort of thing happened with the physio support group thing that I went to at the hospital, so… I think initially about 20… there were about 20 people at the group, and the numbers dwindled as time went on, sort of dropped down a little bit. But I was the youngest person there, I think, probably by about ten or fifteen years. I did have another participant or patient within the group that did say to me, ‘You’re far too young to be here,’ and I was sitting there, going, ‘Uh, well, I don’t believe that fibromyalgia chooses an age for someone to be ill.’

I appreciate that, you know, it’s more common in women and it’s more likely to be, sort of, you know, over a certain age, but the fact that I was sitting there, going, ‘But surely the fact that I’m sitting here,’ you know, ‘I’ve just turned 30 and I’m sitting in this group, surely a little bit of a, oh, blimey, actually this has opened my eyes to the fact that it doesn’t pick and choose who’s going to get it,’ [nodding] would make you feel that you would want to be a bit more kind of inclusive.

So I think that’s one thing that just really stuck out for me, was the fact that it was, ‘Oh, you’re far too young to be here,’ I thought, ‘Well, no I’m not, because if I wasn’t meant to be here, I wouldn’t have been invited in the first place.’  But it was… and I think that kind of set the tone for the group as well. Again, it was it was nice to be there and it was nice for me to… you know, I felt comfortable enough to be able to talk about my experiences and my understanding of things and how it’s impacted me and things like that, but again, it was… people seemed a lot more unwell than I was, you know, there were a lot of people that couldn’t sit down for a really long period of time, they had to keep moving, [gestures with hand] they were using sticks, had to wear dark glasses because they were so hypersensitive to light. I just sat there and again, I felt a bit, you know, not like a fraud but just again, but just again I was sitting there, going, ‘Do I really fit in within this group?’

Yeah, because obviously there was nothing opened the, the group that I go to in [the city] obviously had to be cancelled and that’s where I get most of my support for fibro since that though we have moved to Zoom, which is so much easier because then we go on and we’ll have a chat on there. So, the meetings once a month and they still have the specialists who come on and they join in the Zooms, so it’s really, it’s really quite good that it’s still there. But it took a while to get that set up. and obviously not being able to see people or go out and have a coffee, go on to my best friend’s house, I wasn’t able to do that, you know, and all those wee things are all for mental health and when I wasn’t able to do it, then my mental health declined, which meant I spent more time in bed again, not just from the ME or for the fibro but also from the depression [touches mouth] yeah and not being able to go and get out in the fresh air and go for a walk, I didn’t want to do it.