- Fibro Action and FMA UK are now Fibromyalgia Action UK
- What are you doing for awareness week
Lizi shared with us her moving story and why she has embarked on sposnored sliming for FMA UK: ‘’I started feeling unwell when I was 13 with a headache (I was never ill before then not even with a childhood illness). We thought it was the school head virus that I had caught but the headache never went away! I am now 49 years old!
Af first when the headache never went my mum thought it was fear of my strict Sardinian dad, who I was scared of and whom mum and I needed to keep secrets from to stop him from going mad with anger. It’s amazing how keeping stuff in and not saying what you really want to can affect your mental and physical health.
My mum had an accident with me when I was 2 and fell backwards out of a pram and needed stitches to the back of my head - they say Fibromyalgia can be due to emotional of physical trauma - both of which I had been going through! My dad said my head pain was because I was “crazy” and that mental health problems should not exist in our family as it was a bad thing not to be talked about ( although now grown up with my own kids I can see how dad was probably mentally ill to due to his past but would never show it).
From the day I got my first headache I had to go through all my exams with this daily pressure and my mum pushed me in my exams (but in a good way!) and when I failed I psyched myself up for hours thinking how would I tell my dad without him going mad - but actually he liked it when I did come to him.
I then got all the childhood illnesses from then and through university as my immunity seemed low.
I never really knew what was wrong with me though so my mum took me to spine specialists, chiropractors, osteopaths, surgeons to try and help a little but nothing helped (and I felt like I would somehow be lost without my headache as it was all I know!!).
Beth has shared her incredible story and her tough challenge with us through her fibro blog. ‘’I'm climbing Kilimanjaro in hope to achieve a life-long goal. I was diagnosed with fibromyalgia for four years and never saw myself climbing a mountain ever again. Thanks to the support of family, friends and professionals I am hoping to inspire others who live with fibro and raise some awareness about the condition. I have chosen to fundraise for FMA-UK on the basis that should I chose to access help, advice and support this is where I would head. I will be proud to wear the FMA UK shirt as I peak Africa’s highest!
Fibro is incredibly unique to each individual that suffers with it. I worry that sharing the fact that I live with it, and am looking to undertake such a physically demanding challenge will add to some peoples assumption that it is a made up thing. Or worse, further demotivate those who don’t feel they would be able to attempt what I am looking to.
My colleague helped me to let out my thoughts and feelings on this. He told me I should be proud of what I’m doing and shouldn’t be afraid to share my story. He went on to tell me about a radio interview he had heard that morning. The interview was with a 2016 competing Paralympian, who had been inspired by Ellie Simmonds in 2012 and won Bronze at Rio.
Kicking myself, I thought how ridiculous. 4 years in and I STILL struggle to talk and accept my condition. This needs to change. My colleague was right, I should share and I should be proud of what I am doing and trying alongside my condition. I cannot change my diagnosis but I can change how I think, feel and talk about it. Hopefully I’ll learn how to tell a cool story or two in the process too!
‘Invitation’ to claim Personal Independence Payment (PIP) in place of your indefinite DLA award.
In the coming months if you are at present in receipt of an indefinite DLA award and were under 65 on 8th April 2013 you will get a letter ‘inviting’ you to make a claim for PIP. If you wish to continue to get some benefit you have no choice but to put in a claim.
The instruction will be to phone the PIP claim line. In bold below is the script of what the person from the DWP will say to you:
“Personal Independence Payment’ (PIP) is a new benefit. Once you complete a claim over the phone (In writing if paper claim requested) you will receive a ‘How your disability affects you’ PIP2 form to complete. When you return the PIP2 you can include any medical or supporting evidence you think may help us. You will then be referred to an Assessment Provider who may gather further medical evidence
Is there any other specific medical evidence from your DLA claim that you think might help?”
The important part is the question at the end and it is likely you would like the previous medical evidence to be taken into account and if you say ‘Yes’ you will be asked:
“Do you know what that evidence was when it was obtained?”
The chances are you don’t know what evidence was given to them at the time so the safe answer is ‘I don’t know’
You should then be told:
“We can send you a copy of the medical evidence we have on your DLA file. Due to requirements under the Data Protection Act and our document retention procedures, previous evidence may not be available. If evidence is still on your file we will ensure that it is taken into account. On the covering letter we send you with the copy of your DLA medical evidence you will be given a date by which you must let us know if you want to use any of the information for your Personal Independence claim.”
This way you get to decide what evidence you want them to use not the DWP. If the person you are speaking to does not offer to send the information to you ask for it yourself.
If you want more information on this or what their ‘script’ says in full if you say ‘yes’ please contact
Janet Horton, Benefits Adviser on the FMA UK Benefits Helpline which is available Mon and Fri 10 - 12. Tel: 0300 999 0055 (please note the Benefits Helpline is closed until 6/1/17)
Craig swam 2 miles in the icy Loch Lomond in Europe’s biggest open water swim to support FMA UK work and to raise awareness about fibromyalgia. Craig raised an astonishing £1,980 and finished the swim in one hour and three minutes, with 44th place, which is a great result as he had a starting number 632!
Craig said: ‘’I was delighted to be able to raise so much money for such a worthwhile cause! The swim went very well! I really enjoyed it and after the first lap or so I had warmed up and no longer felt the cold’’.
We would like to thank Craig for this amazing challenge. Craig has been training a lot to be able to complete the challenge and said: ‘’So that I can use my pain and suffering in the pool and then over the two mile stretch in the icy waters of LocH Lomond to help others who suffer on a daily basis’’.
To donate go to Craig’s JustGiving page:
Musculoskeletal Webinar: Specifically for users of Musculoskeletal conditions (MSK) services: Government Green Paper on Work & Health
Friday 27th January 2017, 12.00 -13.00
Organised by the Department of Health England and ARMA (Arthritis and Musculoskeletal Alliance)
Webinar subject: ‘’Building on the current service provisions for people with Musculo-skeletal conditions’’.
Are you a person needing Musculo-skeletal services?
To register for the Government Green Paper on Work & Health
Friends Chelsie Marono and Ike Daeche jumped from a bungee on Sunday the 13th November to support FMA UK work and to raise awareness about fibromyalgia because Chelsie’s mum lives with this condition. They raised £570 and a further £250 will be donated by Direct Line Group, Chelsie’s employer.
Chelsie told us: ‘’The bungee jump was even more scary and difficult than I thought it would be, but somehow I managed it! I'm not sure I'd be able to do it over though - if it wasn't for my mum I would have chickened out!’’. We would like to congratulate Chelsie and Ike their courage and thank for their fantastic fundraising efforts.
Before the jump 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 3 am 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.
- Christmas Closure for Office & Helplines
- Ultra Challenge Series for FMA UK in 2017 have arrived!
- Send an Ecard with JustGiving and support FMA UK
- Order Information resources from FMA UK
- Students of the Rushmoor School in Bedford raised £577 for FMA UK through a Sport-a-thon
- FMA UK reports on Health & Safety event for North West Highways, held on 17 October in Manchester