On Monday the 14th November at 10 am on BEN TV ( channel 182) there will be a 30 minute programme about fibromyalgia. The guest speaker will be Ella Vine, Executive Officer at FMA UK. She will be asked about various things, from what is fibromyalgia, the treatment options currently available, what FMA UK does to help patients, what the government is doing and what else needs to be done. We hope it will be an interesting conversation!
Edited: Watch Ella's interview here
Chelsie and her friend will jump from a bungee on Sunday the 13th November to support FMA UK work and raise awareness about fibromyalgia because Chelsie’s mum lives with this condition. Chelsie told us: ‘’My mum is one of the bravest people I know, and has always done everything within her power to help and support me whenever I've needed it. She's wiped my nose and tucked me in bed when I'm poorly and she's taken my 3am teary phone calls when I'm down and need someone to talk to. I love my mum with all my heart, and watching her suffering with fibromyalgia breaks my heart because there's little I can do to help, and the worst part is so few people have heard of fibromyalgia let alone understand it, so they don't realise what she goes through on a day to day basis.
I chose to support FMA UK because I feel the work it carries out can directly affect my mum in a positive way, and it can do this more so with more support and recognition.
The UK government launched a national consultation on work and health on the 31st October 2016. We want to listen to the needs of people with disabilities and health conditions in order to bring about a positive culture change around work, health and disability. To find out more about the consultation and to take part, go to: www.gov.uk/workandhealth
Link to press release - https://www.gov.uk/government/news/work-and-health-plan-to-help-disabled-people-into-employment
In response to the recent announcement that some claimants will be spared the repeat work capability assessments for Employment and Support Allowance (ESA), FMA UK is pleased that the benefits system is being changed to reduce the distress on those claimants who are already dealing with their chronic health condition(s).
On the 10th October, Damian Green stated that only claimants “who have already been placed in the ESA Support Group or UC (Universal Credit) Limited Capability for Work and Work Related Activity categories following a WCA (work capability assessment)” will be considered for reassessment exemption.
While it is still a developing situation, we understand that it is possible that certain conditions will automatically entitle claimants to be exempt from reassessment. Green has also said that only claimants “who have the most severe health conditions and disabilities” would be eligible. He defined this as claimants with:
- often progressive and incurable conditions
- with minimally fluctuating care needs
- who are unlikely to ever be able to move closer to the labour market and into work.
Elliewc has shared with us her story of diagnosis of fibromyalgia and how it could have been different if she would have been diagnosed earlier. The Essay is an entry into the international Edgard Stene Competition for patients living with musculoskeletal diseases. We wish Elliewc good luck and invite you to read her story:
''Way back when I was some 20 plus younger than I am now, I started feeling quite unwell. I was working in an office with closed windows and air conditioning for the first time in my life and I found that I frequently ended the day with weeping eyes and headaches. I blamed the air conditioning – and to this day, air–con still dries my eyes out.
And aching legs. Which of course I put down the fact that I was on my feet quite a serious amount.
I started the day with my wonderful 3inch heels and ended in flats. Which at 5 foot and an inch or two, I hated. I loved my high heels and bought as fancy ones as I could afford. All sorts of colours and decorations. Our local high street had a shop which kept the shoes used in films and TV and I often bought there. I was very tired but as my day started on the 6.30am coach into London and I came home to 2 children under 12 with my husband (we were both working in the same office) I thought no wonder...
And I had IBS – and an imminent ulcer – not my first as it happens, but that’s another story.
Jill Liman will shave her head to raise funds for FMA UK and to raise awareness about fibromyalgia. Jill has been suffering with fibromyalgia since her teenage years, but has been diagnosed only 4 years ago. Fibromyalgia causes fatigue, pain and sleep problems so bad that Jill had to take early medical retirement from the Tesco store she working for.
Jill tells us how she copes with the condition: ‘’Every day is different, I am telling to myself that I will get up and do something around the house. However I f I have a bad night, which happens most of the time, I am unable to get out of the bed. My legs don’t want to move and my back and arms ache’’. Jill’s says that her husband, Salih, looks after her well. ‘’I cannot do everyday tasks, like cooking and cleaning. My husband does it’’. She adds: ‘’having this condition at the moment makes me so tired, I just want to stay in bed and sleep forever. Sometimes I don’t see anyone for days- just my husband and our two dogs. My friend, Rosy, helps a lot. She helps me out of bed and she takes me shopping and out to girly coffee or tea together, which is nice’’.
Jill’s head shave will take place on the 13th November in Sible Hedingham (Colne Valley in Braintree District of Essex) in Swan Street Barbers.
To donate to Jill’s JustGiving page visit:
- Research Study- Fibromyalgia and Physical Activity
- Matt's Vodafone Big Bold Challenge for FMA UK
- Great Run marathon series 2017
- World Arthritis Day 12 October 2016, includes fibromyalgia and other musculoskeletal conditions
- Vacancy - Health Unlocked Online Community Volunteer Admin
- Andrea's inspirational story