Demi-Louise Bailey - Miss Voluptuous UK

Demi-Louise Bailey has contacted us with her story about competing in charity pageants, and is competing in Miss Voluptuous UK in September.  She tells us: 

"I was diagnosed when I was 15 (2012)- at this time in my life I was practically immobile. I was forced out of school. I had to force and push to get this diagnosis, I had been discharged and then referred and that process was repeated and FINALLY I was told that my chronic pain, my tiredness, depression, anxiety, ibs. It was all linked.

I've been through several medication changes, my weight has fluctuated massively. Self acceptance was probably the hardest part of my diagnosis. With medication, check ups every 6 months, I am now mobile.

I will not let my disability define me, I am stronger than that.

So I started competing in 2013, when I won the title of Sheppey Princess. I then has a serious ankle injury, which led me to take a break for two years. I've then gone on to compete in charity pageants. But I came back on a national stage again in 2016 as Miss Kent Curve. I placed top 5, won congeniality and publicity award. I've then gone on to compete again and placed first runner up! Won top Top Model!

I am now competing in Miss Voluptuous UK, for my chance to be there first UK queen. This is a platform based competition and Miss Voluptuous directors pride themselves on their girls charity work. So here I am! "

GOOD LUCK ...and be sure to let us know how you get on.

Hayley Kenward & her friends raised over £1,000 by abseiling down the Spinnaker Tower

Hayley Kenward together with three friends raised over £1,000 by abseiling 100 metres down the Spinnaker Tower on the 12^th August to raise funds for FMA UK because her partner, Michelle, lives with fibromyalgia. The Emirates Spinnaker Tower is an iconic building soaring 560 foot (170 m) above Portsmouth Harbour and the Solent. It is taller than the London Eye, Blackpool Tower and Big Ben and has already established itself as a national icon for Britain.

Hayley told us after the abseil: ‘’I’m seriously overwhelmed and overjoyed by the support we’ve had and the amount we have raised’’. Hayley wrote a blog on the abseil and you can read it here:

https://www.atouchofhope.co.uk/single-post/2017/08/16/Abseiling-down-The-Spinnaker-Tower-for-2-Charities

Read more...

Donation in memory of Hilda

Sue Hanson sent us this picture of her nan, Hilda - and shared why the family donated in her memory.  Our sincere condolences are with the family and our thanks that they thought of FMA UK at this sad time.  

I recently lost my lovely Nan, Hilda. Instead of giving flowers the family asked for donations in her memory to go to charity. I was touched when I heard that they had chosen FMA UK to be the chosen charity as I her granddaughter suffer from the condition and they said they knew that this is what she would have wanted. I feel I had a special connection with my Nan and although we did not talk about my condition often she always showed a real understanding and empathy for the struggles in my life and a wish for my life to get better. I know that it would have made her very happy to know that FMA UK had received over £400 in her name and memory. It is obviously a very sad time for all of the family and I miss her more than words can say but I feel that this in a special way is my Nan continuing to give her love and support. She was always a loving and caring lady with a great sense of humour and even at 102 years old was still young at heart. I am truly thankful to have had her in my life for so many years.

EULAR Edgar Stene Prize 2018

EULAR Edgar Stene Prize 2018

The European League Against Rheumatism (EULAR) has launched the Edgar Stene Prize 2018. Every year, EULAR and EULAR’s Standing Committee of People with Arthritis/Rheumatism in Europe (PARE) offer the Edgar Stene Prize to people living with rheumatic and musculoskeletal diseases, for the best essay based on a specific topic.

I have compiled a summary of the Prize in the blog below, and attach the rules from EULAR:

https://simonstones.com/2017/07/31/edgar-stene-prize-2018/

This year’s winner was a lady from The Netherlands, who described her experience with fibromyalgia. I was also lucky enough to win the Edgar Stene Prize in 2016, and it would be great to see another UK winner in 2018! ☺ 

Simon Stones

FMA UK Trustee

Lisa McLernon's charity skydive

Lisa McLernon, 37, from Sutton-in-Ashfield will skydive in September in Langar, Nottinghamshire with UK Skydiving Adventures. She has already raised £750 on www.sponsorme.co.uk/lisamclernon and she continues to fundraise. The night-shift postal worker in Beeston will jump out of a plane at 13,000 feet to make a difference. Lisa told us: ‘’I'm supporting Fibromyalgia Action UK, Alzheimers Research UK, Nottinghamshire Wildlife Trust and Royal Scool for the Deaf Derby. All the money raised will be equally split between these charities. 

It is my first time fundraising for charity and I have decided to jump (literally) right in at the deep end and do a skydive. It seemed a good idea at the time!

I have particularly chosen Fibromyalgia Action UK as I have a number of close friends who I see suffer this 'invisible' illness on a daily basis and I feel I need to help towards a cure as well as raise awareness. 

Read more...

Research study - self-compassion, coping strategies & wellbeing in fibromyaligia

Research opportunity: Take part in an online survey into the role of self-compassion, coping strategies and well-being in fibromyalgia. 

Self-compassion is often thought of as acting kindly towards ourselves. This project aims to explore whether self-compassion plays a role in coping strategies and emotional well-being in people with fibromyalgia. This is important because it may help researchers to understand the role of certain psychological therapies in helping to support the emotional well-being of people who experience physical health conditions, like fibromyalgia. 

If you agree to take part, you will be asked to complete an online survey. You will be asked some demographic information about your gender, age, ethnicity and about the duration of your fibromyalgia symptoms. You will then be asked questions about self-compassion, pain acceptance, fibromyalgia symptoms, emotional well-being and coping strategies. This will take around 20 minutes to complete. To take part, you must over 18 years of age and have a fibromyalgia diagnosis. This can be a diagnosis made by a professional or you may be self-diagnosed.  

Dr Gemma Evans from the University of Chester is conducting this research project, which has been reviewed by a University Research Ethics Committee. Further information about the project can be found here.

To take part, please click the following link:

https://chester.onlinesurveys.ac.uk/self-compassion-coping-strategies-and-well-being-in-fibro