Office Move

Please Note: From 22nd October our head office will be based at Studio 3006, Mile End Mill, Paisley, PA1 1JS. We will no longer be in Studio 3007. 

A look back at awareness week 2019

Awareness week has ended, and we’ve now got the chance to look back on what was a busy week for the charity.

This year, we used our social media platforms to post a lot of content to increase awareness of both fibromyalgia and the charity. We collected several case studies from people, and had posted photos of them highlighting our BecomeFibroAware campaign. These were generally well received and we’d like to thank Emily, Kayleigh, Stephen and Chloe for taking part in this. Emily, also submitted her own video which highlighted her experience of fibromyalgia and provided an in-depth description of the condition to try and make more people aware of it.

As well as case studies of those suffering from fibromyalgia, we also shared stories of people involved with the charity, such as Belinda Humphrey who ran the Great North Run for us, and Colin Henderson who raised over £3,000 for us by cycling around Northern Ireland. We shared a fantastic piece of writing from Chris Rankin who plays Percy Weasley in the Harry Potter films. His article highlighted what it was like for someone who cared for his partner who has fibromyalgia, and the article was very well received by our supporters.

Throughout the week, our social media pages saw a spike in engagements, and throughout the week we saw a massive increase in likes and shares which was a positive step towards making more people aware of fibromyalgia.  

Although awareness week is over, the charity will continue to make more people aware of fibromyalgia, and we have some exciting plans and projects over the next few months which we hope to show as the charity grows.

Stephen Bailey: Why I want to raise awareness

I want to support FMA UK because this is a really chronic condition that causes pain all over the body. It affects so many people from Lady Gaga to my mum. And that's the reason for my support and wanting to raise awareness. Personally, it doesn't affect me but when it flares up, it really effects my mum. She can't sleep with the pain and it makes her sick. It seems to be one of the few things that isn't discussed and from what I understand is that it is hard to diagnosis. It feels like it needs a little more awareness and support in the hopes of one day if not curing it, there can be some form of medication that can really put it in its place

Chris Rankin: How fibromyalgia impacts my partner

When Nessie and I met, she was a bundle of energy and adventure. In the 3 years since we got together, I have watched her have to drop out of university, leave a job, struggle with chronic pain and fatigue, and essentially go from being a trainee circus performer to virtually bed bound in a matter of months. 

It took us nearly 18months to find a doctor who was sympathetic and open to investigating fibromyalgia as a diagnosis. 

Ness is 23. Fibromyalgia has had a huge impact on her life. She should be out with friends, walking the dogs, finishing her degree, going to work, getting to do things she wants to do. Instead, 9 times out of 10, she’s at home.

Having said that, Ness is a stubborn one. Which I am both immensely proud of her for, but often worried and, sometimes, I’m frankly frustrated by… I LOVE that she won’t let fibromyalgia get in the way of her going to things she doesn’t want to miss out on, but sometimes we both know that it’s not a good idea. I guess it’s a learning curve for both of us to work out where the limit is, and when the limit can be pushed. 

I am incredibly fortunate that I’m a freelancer. I often work from home, or work for short and an intense periods. This means that most of the time I am able to be at home to “care” for Ness. (I don’t really consider myself a carer, I’m her partner, we are a team, and therefore I do what I hope anyone would do for a loved one). 

Caring, for me, means trying to make sure we are both fed and watered, and that the laundry pile isn’t taking over so much of the house that it looks like we’re auditioning for a tv show about hoarders. I am the chef, the shopper, the occasional cleaner (we’ve recently employed someone to come and do that for us), the long-distance driver, the alarm clock, the fetcher and carrier, the “hold on to me so I don’t fall over getting out of this bath” and the “stand in front of me so I don’t fall down the stairs”. I am the wheelchair pusher on longer excursions. I am the sole income, and the dog walker.

I don’t consider this caring, I consider this what one would do for one’s partner if they need it. 

I try not to get frustrated by Ness’ condition. It IS frustrating for sure, but I’m not the one in constant pain, borrowing spoons from the days we haven’t had yet in order to enjoy a day out. I’m not the one who could sleep all day and still not feel rested. 

The most frustrating thing for me is that there is essentially nothing I can do to make it better for Ness. All I can do is make the environment around her as easy and as comfortable as possible both inside and outside the house. 

The problem with Fibromyalgia, in my relatively inexperienced opinion, is that on the surface it’s invisible. You don’t see Fibro sufferers on bad days. You see them when they’re having a “better” day.

How can we raise awareness of Fibromyalgia? Talk about it. Be honest about what a difficult and unpredictable condition it is. I think (again, I am NOT the voice of authority) that a lot of spoonies are prone to putting on a brave face for the sake of not being a nuisance, or not wanting to “ruin” the nice day out. I think the best way to educate people is to be honest about what’s going on. Tell them the stuff you’d probably rather they didn’t hear about. I completely know that that is a really easy thing to say and not always an easy thing to actually do, but when you can’t see the problem, sometimes it needs to be spelled out. 

To anyone who suffers with this horrible, debilitating condition and all of you who love and care for someone with Fibromyalgia, you’re all brilliant and remarkable humans. 

Chloe Jade: My struggle with fibromyalgia

Chloe is a 21 year old who has had fibromyalgia for over 5 years. She has had to give up work due to the pain from fibromyalgia.

“Before Fibromyalgia I was active, I loved going for long walks and doing things with my friends. I was happy back then. Then fibromyalgia came along and turned my life upside down and all the things I once loved doing became a thing of the past. I felt and I still do feel angry and I grieve a lot for the old healthy me.”

“My diagnosis affected me greatly. I saw over 20 doctors because most doctors I saw beforehand would not help me and they just turned me away. I was devastated and so overwhelmed by it all. It took six years for someone to finally say I had fibromyalgia and when they said it, I burst into tears.”

“My life is chaotic, painful, and I’m full of anxiety, fatigue and envy for those who are healthy. Every day is a battle and a constant war.”

Colin Henderson: A fundraiser for FMA UK

Colin Henderson is one of our many amazing fundraisers who challenge themselves and do fantastic work to help the charity. Colin, having battled with pancreatic cancer decided to embark upon a 400km cycle around Northern Ireland, managing to complete it over 3 days – something we find incredible!

Colin raised over £9,000 and decided to split it between 2 pancreatic cancer charities and ourselves – his daughter has fibromyalgia.

We think Colin did an amazing job, and are extremely grateful and appreciative to him for doing this.