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, Ye, or, N, and I’ll know, Okay, that’s not my fibro, that’s something els, 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.

Well website wise or articles I look at the spelling and I look at the source. If the spelling is a bit dodgy and the grammar and things I will say, That’s rubbish you know, that is written by someone who just wants to make a bit of money writing an articl. I look at the source and if it’s a reputable source like sometimes news websites will put out an article about fibro and it’s totally wrong, so that’s not a reputable source. Whereas if it’s a health organisation you know, that might be a bit more trustworthy.

There are a lot of blind spots with fibro, there are a lot of things that people still don’t know, so a lot of it is speculation. So when someone says, I mean even just today someone says, Do you think it was, your injections as a child that gave you fibro and you know, people are coming on and agreeing and I’m like, But we don’t know that. Where is the evidence and other people are saying, Have you had a trauma in your life and then got fibromyalgia afterwards Well I’ve had a lot of trauma in my life but I don’t know if that is what has caused my fibro.

You know, I try and think logically and if I read the article and it makes sense to me, I look at the source and if the source seems, if I don’t understand where, what the source is I will look it up you know.

A lot of my uni work taught me how to look up credible sources, so that, that’s how I know to do that, otherwise I wouldn’t have a clue and would just believe everything I read you know, Did you break your leg Yea, And now you have fibr you know. A lot of people are saying, I broke my leg when I was younger now 20 years later I have fibromyalgia, I think that’s what caused i, well you don’t know that.

So it’s you know, check your sources, check the grammar, the spelling and check that you know, the information is credible you know, that’s the only thing I can say about that.

And when I went back to my next appointment with him I explained to him, What you had me do at the last appointment left me in bed for five days, I couldn’t move my leg, and he said, How did you get to the toilet and I thought, Is that what you take away from that, how did I get to the toilet So I said, I’m not coming bac.

So I went back to the doctor again, and I said, Listen, I am still sore. Every time I go to a physiotherapist they want me to exercise. I’m aware that I am fat, I am aware that I’ve put on weight, I cannot exercise because I’m in pain, if you sort out my pain I will exercis Happily, I want to.

So I was referred to a physiotherapist in the hospital this time. The others had been in the primary care centre. I went to the appointment at the hospital and I was taken in and seen by a lovely woman and she said, You don’t look too happy to be her, and I said, Well because I’m not and I will tell you wh, I said, I am not going to exercise, I am not going to squat against a wall. I am not going to do yoga positions. I am here because I am in pain and either you can help me or you can’, and she said, That’s totally understandabl.

And she went through different, she actually went and got out a printout leaflet and brought it to me and gave me a list of exercises that I can do for someone with limited mobility and I looked at it and I laughed, and she said, What’s funny and I went, they’re all on the floor, I can’t get off the floor. I appreciate that you’re trying to help me but I cannot do those either because I need someone to help me off the floor, I can’t get u, and she went, Oh, so I take it you don’t want to come back for a follow up appointment and I said, No, I don’t want t.

Like having, having a shower and changing the bed on the same day is a big no-no you know, getting dressed, the sensitivity, on your skin, hearing sensitivity, smell sensitivity. I mean loud noises for me is just [gestures to ears], I can’t handle it. Clothes, I’ve had to change to what I wear to things that don’t have seams, bras that don’t have hooks that I have to put on over my head because they’re softer on my skin you know, shoes, I’ve went up a shoe size because I put on weight, I’ve had to get rid of all my clothes and had to buy a whole new wardrobe because I’ve put on so much weight.

I find that it’s unpredictable, but I know that if I stand at the sink to do the dishes I know that my back is going to get sore so I have to sit down to do the dishes, but then I’ll have to stretch into the sink so my arms are going to get sore.

So it’s, it’s finding ways of doing things differently you know, getting a shower, I know that I’m going to be exhausted after getting a shower, so I get a, I change the bed one day and I get the shower the next day because I know that I can’t do both.

Yeah, because there, with, because with fibro there are other things that come with it like the dry eyes, there are the IBS, the costochondritis you know, things, different types of things, if there’s something, if a healthcare professional knows that these things come with fibro and that there’s something that can help those symptoms, by all means refer you know.

But with fibro as a whole there, there are so many other little things embedded in there that make up the diagnosis of fibromyalgia, so I think it, it’s finding the little things and noticing the little things that might need addressed, and that in turn might then help the big thing which is fibro itself.

You know the healthcare professional, I mean I went to go and see about getting laser eye surgery done but because I had dry eyes I couldn’t get it done, and I have to have drops in my eyes now all the time, and the doctor didn’t notice that. I went to the doctor because my eyes were streaming and he said, it’s hayfeve, and I said, it’s winter, I don’t have hayfever, it’s winte.

But when I went to get the laser eye surgery I was told, No, you’ve got dry eyes, you can’t have it don, I thought, Well if that had have been picked up I could’ve been having the treatment for the dry eyes soone. You know there’s things different healthcare professionals might notice about someone that they can then make a difference to.

So how would they you know, find out about or you know, notice these little things, how could they find out about that?

I think it’s communication, it’s asking the patient, Has anything changed? Is there anything worse or better you know, there’s like a list of things that come with fibromyalgia, it’s asking them, Do you have this? Do you think you might have this

You know like with the IBS, a lot of people have bowel issues and don’t realise that it’s connected. Dry eyes you know, the costochondritis, like the pain in my chest, people don’t realise that they’re all connected.

So it’s asking the patients those questions and finding out for themselves you know. It might take that, it might take that bit more time with that one patient, but it’s time that that patient will appreciate.

So the doctor that I went to I asked you know, Can I have an OT come to my house and see what help I need because I’ve been told by a lot of different people that I’m entitled to this None of them professionals, just regular Joe’s, friends, people that I know who have said, You do know that you’re entitled to have an OT come and assess your house and I thought, Well my house is already adapted but I am having trouble getting out of be. I had to buy a new bed because mine was too low, so I had to spend money and buy myself a new bed not knowing that I could’ve got bed rails to help me get out of bed.

So the, the doctor then did refer me to the OT who came out and done the assessment and they were actually very good.

So when you say they were really good, what made them good?

Well when they came out they asked me what I felt I needed rather than looking around and saying, You don’t need anythin, they asked me what I felt and then they either agreed or disagreed and explained why. Then I asked them, Do you need to look around the house and they said, N. They asked me, What do you feel you need and I explained, I find it hard to do the dishe, and they said, W, she said, We can supply a perching stool, would that be something you’d be interested in and I said, Ye, and she asked, What else do you have trouble with and I said, Well getting in and out of be, and she said, Well we can supply a bed rai, and at that point she said, Can I see your bed just so that she could get the size of the bed rail right and I said, Absolutel, straight in there and she had a look, Okay, we can supply tha.

And then the bath, the shower seat was actually given to me by my mum, so it’s a metal, it’s metal and I explained to the OT, it’s metal, it’s cold to sit on, it’s har, and she said, Well the one that you have is the one that we would suppl, and then she gave me advice, Put a towel on it or buy a bath mat and put that on it to make it softer to sit o, you know, they, they gave me advice instead of just saying, You already have one, you don’t need it, you don’t need one, that’s what we would give yo, she gave me advice as to how to cope with the one that I have, which has actually made a difference.

So what kind of difference did that make to you, you know, to have someone looking at it and not just say, Oh, yeah, that’s, you have a chai, but actually pointing out different things, which would help you cope with these kind of things?

For me it felt like this person cared about my way of life, about my comfort, my level of comfort, how to make it better you know, they didn’t just brush me off or brush me aside and say, Well you have a chair, what more do you want and I would never have thought about putting a towel or something on it, and I thought, Well a towel’s going to get wet and it’s going to get cold so maybe I’ll go with the bath ma, and I done that.

So feeling that these people actually cared about even though I’m young and I look physically fine, there is something wrong with me and I need help and they were willing to give it, regardless of what I looked like on the outside they recognised that I need help.

Okay, I’m 33 now, so when I was 16 I was diagnosed with depression, and over the years, into my late teens or early 20s I noticed that, I started getting pain across my shoulders and into my neck, and I went to the doctor and was told, it’s just stress and tension, just try to relax. You also have anxiety, try to relax, don’t bring your shoulders up to your ears, try to rela.

And then over the years I ended up going to different doctors with different types of pain; pain in my wrist, headaches, fatigue, feeling really tired, and I used to have a lot of energy, I mean I was very sporty at school, I mean I would climb trees and lampposts and you know, I was in the Army Cadets, I wanted to be a soldier, and then I just lost all my energy. I went to a different doctor who suggested it’s because of the depression and that I need to get up and go, and I said, I can’t, I’m too sor

So at that time I lived in a city, whereas now I live in small country town, so I have changed doctors yet again, and the doctor that I’m currently with has said that the only thing that I need to do is accept that I’m in pain and will be for the rest of [my] life, and that I need to learn to cope with chronic illness.

But in the meantime the pain has got worse, it has spread to my arms and legs and my shins and my feet and my other wrist now hurts too.