FMA UK Volunteer Vacancy - Berkshire & Buckinghamshire
We are currently recruiting a volunteer to cover our Regional Coordinator role in the Berkshire & Buckinghamshire area.
Our Regional Coordinators are our point of contact for new enquiries via email and telephone, provide support to the local Support Groups in the area, and represent FMA UK at events among other tasks.
Billy Ray Mansell: Exercising whilst living with fibromyalgia
Billy Ray Mansell answers questions below about how he exercises whilst living with fibromyalgia. Billy supports the We Are Undefeatable campaign which encourages activity and exercise in those who are living with a health condition and has provided us with an informative insight into his experience of this.
How can fibromyalgia make you feel, and what barriers would this bring to exercising?
With my fibromyalgia, I can’t ever seem to escape the physical pain and the muscle tension I have all over my body, the random aches and pains, and the fatigue on a bad day can be tough to manage.
Consequences of this can lead to:
- Forced bed rest.
- Sometimes I cannot exercise how I would prefer or at all
I may have to strip this back down to my roots like some simple stretching, some short walks or low impact activities (activities with less chance of additional injury but what will still have a positive impact with me moving more).
These are just some of the physical barriers, which again are closely linked with the mental health barriers, such as when I ask myself, can I do that?, my body won’t like that?, this will make me worse?, all questions I have asked so many times but the biggest one for me is, not even necessarily the thoughts of doing whatever activity it may be, but the aftermath of doing some activities don’t necessarily impact me straight away, they hit me hard the following day or the day after that.
Janet Horton: Why I volunteer for FMA UK
My role in FMA UK is as a trustee and my specific role is Benefits Adviser, I also respond to all the emails that come in on the This email address is being protected from spambots. You need JavaScript enabled to view it. emails. I help in any other way also, as needed.
I became involved with FMA UK - then Fibromyagia Association UK in November 1993 when I got my official diagnosis of Fibromyalgia, I had had it 4 years by then. I immediately offered to do benefits advice as I had been volunteering for Citizens Advice since 1990. The offer was accepted and I have been the Benefits Adviser ever since. I was not a trustee at the time but became one when Bob Stewart took over FMA UK in 1997. I took on the role of responding to emails in the early 2000's.
Apart from being available on the Benefits Helpline every Monday, Wednesday and Friday up until 2000 and since then Monday and Friday, I have attended all the conferences that FMA UK have arranged, travelled several times to London for meetings with various bodies of Government including the Chief Medical Officer of the DWP back in the early 2000's.
Kelly Bisgrove: My experience with fibromyalgia
I wanted to share my story, to raise awareness on the long-term condition called Fibromyalgia, and
how it has been affecting my life. Maybe some of you can relate?
It’s a condition which can cause widespread pains/aches, extreme tiredness, muscle stiffness, ‘fibrofog’, headaches, and IBS; (to name a few). What I’ve learned from this is there’s a range of symptoms, and there is no test to prove it – which is why it seemed so difficult to get a diagnosis.
A year ago, I went through some trauma which changed my life. For weeks, I was ill and felt
miserable, it became difficult to get out of bed every morning - this is when my symptoms
worsened. While working full-time, it was a challenge to take time off work, going back and forth to
doctors/hospitals to get blood tests, and medication to help me through the process.
Amber Price: My experience with fibromyalgia and why I set up a support group
I've always been a very positive, happy person, but being diagnosed with Fibromyalgia when I was 25 changed my life immensely. I went from a hardworking, busy individual to having to change my whole lifestyle to manage the many symptoms that come with Fibromyalgia. I lost my career in Business Travel in the Oil industry, lost many friends who could not understand the condition and how it affected me, and lost a lot of my confidence in daily life. However, I refused to let the condition bring me down. I made it a point to find projects to do and ways of working from home, to keep my mind busy, giving me purpose and not allowing myself to get depressed. However, it can be very challenging and as much as this helped me, I still found myself extremely isolated and lonely. So, I then decided this year to see if there was anyone else in the community with the condition who would be interested in joining to make a support group. I posted on our local village page on Facebook and was surprised to see lots of other ladies and a few men with the same condition in the village and nearby. I then contacted FMAUK for support in starting a new group and received lots of helpful documents and handouts to start it up, as well as contacts to help with any questions I had.
Georgia: How fibromyalgia impacted my life
I was always very active and driven. I did a sport or activity every night of the week. I loved Musical Theatre and sang and danced almost every day. I wanted to pursue Musical Theatre as a career and was training very hard to get there. Unfortunately this did not work out as I would have liked it to because of my fibro. I am very lucky to have very supportive people around me. My family have been great and support me through the anger, the pain and upset, the career downfall, the mental health and the tiredness. It has had a massive impact on my life, but I refuse to let fibro define me. I push through my pain everyday so I can provide a good life for myself and any future children I have. I'm still the same driven, ambitious person that I was before but now I have to fight myself more to have the energy to get there.