FMA UK is represented on the Board of the European Network of Fibromyalgia Associations (ENFA), a coalition of national fibromyalgia organisations working together to influence change for fibromyalgia patients on the European and national levels. As part of ENFA, a representative of FMA UK attended a meeting in the European Parliament in Brussels of MEPs interest group on ‘’Brain, Mind and Pain’’ and a meeting of Pain Alliance Europe, a coalition of patient organisations from all European countries, lobbying for legislative changes on European and national levels to improve the quality of life for patients living with chronic pain.
As a fibromyalgia sufferer, as well as being the office admin, I try every year to do some fundraising for the charity during awareness week in September. A couple of years ago, along with my daughter - I did a virtual tour of Orkney - adding up the distance I covered on treadmill & bike in the gym each week. Small amounts each week soon totalled up and I made it almost all the way round the Orkney mainland over the space of 6 months..
About this time last year, after the local gym Abbeymill Fitness (now Iconic) offered to raise funds for the charity it was agreed that they would enter runners into the Loch Ness Festival of Running Marathon, 10K and 5K. Excellent says me until I was asked if I wanted to do the 5k as part of their team.
Handcrafted survival kits are being made by volunteers to raise funds for FMA UK and to make your smile and feel that you are not alone. Pippa Stacey, the founder of this initiative said: ''Acquiring an incurable illness in your early twenties is 100 per cent not ideal. Over the past two years, I’ve gone from being a healthy, active student loving life to becoming a medical mystery.
I first became ill with ME at the age of 15, but in the past two years I have suffered a dramatic decrease in functioning, meaning my ME is now severe enough to significantly affect my quality of life. I have been ill for almost six years, and as of now there is no prognosis, targeted treatment or cure for my condition, the symptoms of which include debilitating pain and fatigue, cognitive impairment, immune system abnormalities, sleep difficulties and frequent sensory overload.
Explaining to people that no, it wasn’t a tragic accident and no, it isn’t amazing to stay in bed all day and no, I’m not on my Make-A-Wish Foundation wish every time I leave the house consumes a lot of energy. Meanwhile attempting to conduct trips out pushed in my wheelchair with housemates in heels, on cobbles, after cocktails, has been a battle in its own right, as has learning how to swallow medication while wearing red lipstick.
Originally I saw the project as just a fun way of raising money. To hear the extent that the kits actually help people has been a whole other story, I’ve been so occupied with trying to keep up with student life while being disabled that it didn’t occur to me until recently that I’d somehow accidentally founded a non-profit movement in the process.
Therefore, it will come as no surprise that if we were to look at what google records as popular for health related searches that fibromyalgia appears in the list. However, when Dr Morton’s medical help line was conducting research as part of its market research they were keen to find out what people were searching for online about medical conditions. Expectations were that common complaints like the cold and flu would feature as well as the bigger concerns like cancer.
HealthUnlocked Online Community Volunteer Admin role description
About Our HealthUnlocked online community
Health Unlocked is an FMA UK online Community provided by HealthUnlocked, where people can get support and information 24 hours a day, 7 days a week. Volunteer Admins support provides a welcoming environment for people affected by fibromyalgia. These Admins enable us to provide a better, more responsive service.
This role can be based anywhere in the UK, from home, and undertaken when it is convenient to the volunteer. No fixed time commitment is needed, however we will ask you to login and respond to tasks regularly.
What follows is a day in the life of a FMA UK Helpline volunteer. These are the people on the other end of the phone when you perhaps need some help on the phone. They all suffer FM as well and get a lot out of providing this service.
Working on the FMA UK helpline is certainly a varied and rewarding experience. For me, I am glad to play my part in helping other people with FM by simply listening to them and letting them know that I understand what they are going through.
The calls can be very varied from people simply phoning to find out if there is a group near them or to place an order when the office is closed, to people who are newly diagnosed and scared because they have been told they have a chronic illness, with no cure and don't know anything about it.