Fibromyalgia with Sue McIntosh

Chantal Boyle:
Joining me today is Sue. Thanks, Sue, for joining me. How are you?

Sue McIntosh:
I'm very well, thank you.

Chantal Boyle:
Can you tell me what disability do you have, and could you explain a little bit about what it is?

Sue McIntosh:
I've been diagnosed with fibromyalgia and also chronic pain, obviously, which goes a bit alongside of it. Fibromyalgia is a invisible illness. You can't see it, but you suffer from fatigue, headaches. You can't really remember things, you get fogginess, brain fog, pain in all your joints. And it just can literally put you in bed for days. It's doesn't help if you are in a stressful situation, it can exacerbate it.

Chantal Boyle:
Are there other triggers or does it literally just wash over you and that you can't see that it's coming?

Sue McIntosh:
We get what's called flares. So you can normally tell if a flare is coming because you get a certain ... And it can't always be the same. So you might have a batch of really bad headaches and you'll think, "There's a flare coming." You might get really bad pain in your knees, or it could just be all-over pain. But it's a pain that you can't explain, it's on ... Other people can't quantify pain. So when you are stood next to somebody that is perfectly well and healthy, they would just look at me and think, "What's wrong with you? There's nothing wrong with you."

Sue McIntosh:
But my bones feel like they're burning up at times. It's a real horrible pain when it does come. But then you learn to what we call boom and bust, so we learn to deal with our exercise and then have a rest, or you need to exercise to exercise your muscles basically.

Chantal Boyle:
Have you taught yourself that in how to self-manage, or is there support for people that have fibromyalgia?

Sue McIntosh:
There is support out there for fibromyalgia, and there are groups and a hospital also do, or used to do, groups, which I have attended, which involves mindfulness and self-care. I find mindfulness in a way for photography for me, so I go out and that's what I do now.

Chantal Boyle:
So the mindfulness and the photography is a big benefit?

Sue McIntosh:
Yes. I saw an advertisement actually in my doctor's surgery for the local college who were doing wellbeing courses, and that included yoga and things like that.

Sue McIntosh:
And then I saw photography and I thought, "I'll try, I'll go and do it." And I used to go once a week on an evening to a course, which was free, and learned the basics. And I found that when I was doing that, my mind was thinking of something else and I would come away from thinking about pain, pain, pain all the time. And that's why I kept it going.

Chantal Boyle:
You were listening to The Sunflower Conversations with Chantal. To share your story and find out more information, details are in the show notes.

Chantal Boyle:
Do you mind if I ask how long you've had fibromyalgia? Is it something you were born with or?

Sue McIntosh:
I was involved in a road traffic collision in 2014. And from that collision, I didn't feel well afterwards. I'd been to the hospital and I'd been diagnosed with whiplash, and I just didn't regain how I used to feel. And it took a process from the actual accident in January to be diagnosed in October. So it was a 10 month battle of why do I not feel right.

Chantal Boyle:
You said you were in a car accident. Do you still use a car?

Sue McIntosh:
I still use a car, but I don't drive the distances I used to drive. I don't enjoy going on new trips that I haven't done before, because I get flustered. And with the brain fog as well, it sometimes can cause you to think, "Am I in the right place at the right time?" And coming from the environment I used to work in, for me, my driving skills have reduced quite a lot. So I do small journeys of around 10 to 15 minutes maximum.

Chantal Boyle:
And if you ever go on a longer journey do you have somebody else that would take you, in what consideration? Obviously, if you're taking a car journey you're thinking, "Okay. Well, how far is it? Can I manage that?" I'm thinking about motorway journeys and A-road journeys. Would you go on a journey like that and plan in considerations, and what would those considerations be?

Sue McIntosh:
There are occasions where you have to do it. Very rarely for me, but I do factor in how am I going to feel that day. If I'm having a flare, then I wouldn't do it. If I'm having to take my medication, which sometimes I have to declare with driving, then I still wouldn't do it. But you take each day as it comes.

Chantal Boyle:
You are listening to The Sunflower Conversations with Chantal. To share your story, details are in the show notes. Hidden Disability Sunflower and the National Highways have teamed up together to support people with disabilities, visible and non-visible on the motorways in England, motorways and A-roads I should say, in England.

Chantal Boyle:
And the idea is that all of the traffic officers who are responsible for keeping those roads safe and free of traffic jams and accidents and incidents, they've all received a Hidden Disability Sunflower training. What we are doing and what they are funding is for any driver in England who has either a passenger or themselves that has a disability, they can put a sunflower on the back of their vehicle. They're be available either as a magnet or as a sticker.

Chantal Boyle:
And it means that if they have to stop for whatever reason that may be, the traffic officers, before they get to the vehicle know that somebody inside has got a disability. And that they are now prompt to recognize that and find out if any of the occupants need any additional support. So now you know that, do you feel that that would have been a benefit maybe to yourself if you're going on a journey?

Sue McIntosh:
Definitely, because I've worked on a highway situation. In a nutshell, I was a traffic police officer for a while on the motorway. And we used to deal with incidences where there was somebody that had a medical episode, and we had to sometimes just go with what we had at the situation. Because they're looking through to see if they were a diabetic, finding out any problems like that.

Sue McIntosh:
But to have that actually on the car enlightens you straight away, or it would enlighten me as a traffic officer to say, "Yes, there could be something wrong here." Or we need to be looking at the driver or one of the passengers in case, even if it's a child, that could find this all very stressful.

Chantal Boyle:
Do you wear the sunflower yourself?

Sue McIntosh:
I do wear a lanyard when I go out over my clothing. If I'm going out into shopping precincts or shops, or just generally out and about. Because if I'm with friends or people I know they already know what I have, so I don't need to wear that. But if I'm going into a situation where members of the public wouldn't know, then I wear it. Especially in supermarkets and things like that.

Chantal Boyle:
And how did you first find out about the sunflower?

Sue McIntosh:
I used to have, and I still do, when I used to go shopping I used ... Because I'm quite short anyway. I used to find that getting stuff from the top shelf was quite hard because of the pain I have in my arms, you find it difficult to reach up. And when I was shopping in Sainsbury's one day I saw that they'd started this, giving out lanyards, and I thought, "What a brilliant idea."

Chantal Boyle:
Thanks so much, Sue. I really want to thank you for your time that you've spent with me today, sharing your experiences. And good luck with your photography. I have seen a beautiful photograph that you've done of sunflowers, which is just so uplifting and beautiful. It definitely made me smile and brought joy to my day, so good luck with it.

Sue McIntosh:
Thank you very much, Chantal. Thank you.