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:
Charlotte Chambers is doing her final year dissertation on Fibromyalgia and Exercise. She is looking for participants to take part in a research study on experiences of physical activity.
What is the purpose of the study?
Physical activity is often recommended to people with fibromyalgia as part of their self-management. This study seeks to explore the physical activity experiences of individuals with fibromyalgia in the management of their condition.
6 What will happen to me if I take part?
Should you decide to take part in the study, you will be involved in a single session interview either in person or via skype lasting for no longer than one hour with as many breaks as required by you.
The interview will consist of open ended questions regarding your experiences of physical activity. It will be recorded using an audio taping device, to aid in the analysis of the data after the interview. If it is possible to conduct the interview in person an appropriate time and location will be arranged, such as a university private room or private library conference room. The location will be agreed prior to the interview between us. If skype is more appropriate a date and time will be agreed prior to interview.
Please make sure you read the attached Information Sheet fully before getting in touch with Charlotte to participate.
Matt Roberts has embarked on Vodafone Big Bold Challenge to raise funds for FMA UK because his Mum lives with fibromyalgia. The challenge took place in Manchester earlier this month and it consisted of 5K run and climbing 500 steps.Matt has raised £202, which will be doubled by Vodafone.
Matt told us why this was an important challenge for him: ‘’Anybody who knows me, knows that I hate running...with a passion. So, when the opportunity to do something for a charity came along, I wanted to do something for a charity that is close to my heart and an event that I know I will hate to do’’.
We would like to say thank you to Matt and congratulate him on successfully embarking on this challenge!
To donate to Matt’s Justgiving page visit: https://www.justgiving.com/fundraising/Matt-Roberts9
A marathon presents the greatest running challenge both physically and mentally however the incredible sense of achievement felt after completing can leave a tingle up one’s spine! If you cannot run a marathon (and trust us, we cannot either) maybe it is something your family, friends and colleagues always dreamt of? Now they have the opportunity to fulfil their dreams and to support FMA UK work, too!
From the historic setting of Stirling to the bustling streets of Birmingham, The Great Run series will produce marathons with iconic courses that are sure to inspire.
The Great Runs marathons will be in Scotland, Birmingham, Manchester, Portsmouth... find out more here:
‘’The Future in Your Hands’’ campaign asks you to share your story for the World Arthritis Day, which is on the 12 October 2016. The international common understanding of ‘’arthritis’’ is ‘musculoskeletal’’ and it encompasses over 200 musculoskeletal conditions, including fibromyalgia. To share your story, what living with fibromyalgia is like and how you manage your condition, to inspire others use the hashtag #WADStory
People with fibromyalgia and other musculoskeletal conditions are taking actions every day to live their lives to the fullest. Join the campaign and help inspire and educate others around the world. To take part, share your story alongside a photo or an Instagram video that includes your hands.
To upload your story go to: http://www.worldarthritisday.org/our-campaign
To find out more about the World Arthritis Day, events that are taking place and to find out more resources go to : http://www.worldarthritisday.org/