You are invited to a Fancy Dress Beach Walk on Sunday the 15th of May at 12:00 pm on Aberavon beach in Sandfields, Port Talbot, from Jeff's bend to the pier, organised by Chloey Miller.
Chloey told us why she organised the walk: ‘’The reason I have chosen to raise awareness for fibromyalgia is because my mother Lisa who will be 40 this year suffers from the condition and I have seen the effects first hand. Just last week I went to a GP appointment with my mother and they mentioned there is nothing more they can do for her in regards to fibro. I have seen how much constant pain my mother is in and how much medication she has been put on to help with the pain, however it doesn't seem to work. I see how much of a daily struggle it is and how hard it is for her to complete even small tasks such as making a cup of tea.
I remember a time where my mother was fit and healthy and would come down the beach with the family, and it is hard to now see her on crutches, unstable walking, in a wheelchair when doing things like shopping. She cannot go out along in case she falls. She often drops things as her hands aren't working right anymore. Seeing the effects of her 'fibro fog' is very upsetting as she forgets things, even things she may have talked about ten minutes before. She forgets words mid-sentence, and can get confused sometimes. She sometimes has falls, the other week I had to pick her up off the floor. I could see how upset she was that she feels her independence has been taken away from her. She also suffers with sickness and is afraid to go out in public in case she is sick.
However, no matter how ill my mother gets, she doesn't let it get her down. She truly is my inspiration. With everything she is going through herself she is still the main carer for my uncle who lives with us and cannot walk and talk, as well as caring for my brother and step brother. My mother still supports us all, is always there for us, and always puts the four of us first before her own needs. She really is a warrior, and I don't know how she does it.
Michelle told us: ‘’This is my first ever marathon and I'm very proud to say that I am running to raise money for Fibromyalgia Action UK.
I know two people very dear to me who are affected by this disease, so I am very happy to be helping them by raising both money and awareness. A lot of people don't know much about Fibromyalgia - and it wasn't until a few years ago that I found out about it too! My mother in law suffers daily with it and it prevents her from living her life in a normal way like many of us. Simple tasks are made difficult and extremely painful. She does a great deal of things for us, especially given her condition and I feel that running a marathon for her is only the beginning of our gratitude, but it's the least I can do! She's an unsung hero.
One of my closest and oldest friends has also been diagnosed with this dreadful disease not too long ago. I can imagine that at the age of only 26, being unable to work for a living, unaware of the full extents of your illness & how your future will pan out is simply terrifying. She's one of the stronger people I know who gets on with it with a big smile on her face and takes each day in her stride.
Me and the Race for Fibromyalgia.
‘’Most people would think I’m completely off my rocker for embarking on probably the hardest physical challenge I’ve ever done, Running 100k, that’s 60 miles over the south downs over 2 days this coming August - what a way to spend the bank holiday weekend!
The challenge came about after 3 of my running buddies mentioned it and me being me was totally up for it having only ever done 22 miles max and only started running seriously a year ago, 100k (60miles) seemed the way forward (I clearly have a screw loose), but I do like a challenge and this I’m sure will be the first of many. In other words I don’t like to do things by half, if you’re going to do something then do it but do it to your best. PMA and all that jazz!
Having wildly signed up for the race I felt I needed to do it for a purpose, something that is close to me in more ways than one, and one of them is Fibro. I first heard of fibromyalgia when my auntie got diagnosed over 2 years ago, after many years trying to convince people, the professionals that the way she was feeling wasn’t right, however due to the fact nothing showed up on the tests she was left to fight this condition alone. But thankfully due to Fibromyalgia awareness and the fact it is finally being understood as a proper condition, gave my auntie the diagnosis she needed and an answer for all her silent questions, which has helped her understand her condition and help her live the best life she can but also make her not feel like it’s all in her head and for people not to judge.
Personally I have also showed signs of this condition but I am currently on the mystery list.
We are proud to announce a joint venture has been agreed between personal trainer Adam Foster of First Call Fitness, and FMAUK to produce a fitness DVD that will be aimed at people with fibromyalgia. This fitness DVD is near the end its production but we will let you know when it becomes available with preorders available from here: http://www.thefibroguy.com/shop/pre-order-the-invisible-monster/. It will feature people with fibromyalgia and positive techniques that have been used by members of a support group. There will also be a documentary DVD focusing on fibromyalgia.
Graded activity or exercise has been shown to be beneficial to people with fibromyalgia but often the existing fitness exercises provided by others are at too high an activity rate or for too long a time that people with fibromyalgia often feel worse rather than better. A tailored program of activities that has been developed with fibromyalgia in mind is something that FMA UK has been keen to see developed for a while.
While it is still early in the project we are confident that the end product will meet a need and help people with fibromyalgia keep their activity levels up. Adam Foster has a good plan of how he will engage with people with fibromyalgia and record the positive results that he has already seen.
FMA UK has provided the investment to allow this project to come to fruition and we are hopeful that it will be successful both as a commercial venture but more importantly as an added tool for people suffering from fibromyalgia to make positive change in their quality of life.
Join our campaign - write to your MP and ask to become Fibromyalgia Ambassador!
We have written to all MPs and all Members of the House of Lords to ask them to become Fibromyalgia Ambassadors. We have already received a few positive responsaes - now we need your help to get more MPs on board!
We have joined forces with UK Fibromyalgia (publishers of the Fibromyalgia Magazine) to spread the message to all our supporters to join our campaign and to write to their MPs. Please ask your MP to lobby for their support for the fibromyalgia cause. Tell them about your personal situation and how widespread fibromyalgia is within the UK, and that you are looking for their help in our campaign. We want to create Fibromyalgia Ambassadors and we would appreciate it if you would ask them to sign up to become one.
If you are unsure who your MP is then the "They work for you" website will tell you who and where they are, and it allows you to contact them directly as well. Please go to: www.theyworkforyou.com However when contacting your MP, a short, handwritten or printed letter sent through the post can be very effective. Please address your letters to:
Your MP's Name, House of Commons, London, SW1A 0AA
Take the time to write your own letter, in your own words, and edit your letter for brevity and clarity.
- Cognitive Behavioural Therapy (CBT) and treatment of fibromyalgia
- Inspiring story: living with fibromyalgia and arthritis from the age of three
- Janet Horton, FMA UK trustee, awarded a ''Highly Commended Volunteer'' by Small Charities Coalition and Merkel UK
- FMA UK work with the European Parliament and European partners
- Fundraising from Loch Ness to Broadway
- Buy Spoonie Survival Kit in aid of FMA UK