Author: fibrofly73

I founded FibroFlutters in 2014 and with help from a co-F we gradually became five founding members that directed the group for the first 12 months and who have developed the group into what it is today!

Not only do I co-ordinate FibroFlutters meetings for chronic/invisible and rare illnesses but am also a Volunteer Representative for Sunderland and surrounding areas for EDS UK offering support group meetings for members. Their members are welcome to our network and any meetings.

> CEO fibroflutters.com & Patient Advocacy Organisation including our Social Media Network
> Co-Founder FibroFlutters Sunderland Community Support Group for chronic illness, invisible illness & rare disease
> Editor #chronicillnessVOICE newsletters
> Patient & Health Advocate
> Patient Author
> Expert Patient
> Patient Speaker
> Disease awareness campaigner; marketing and promotions & advocate
> Patient Leader Network - WEGO Health; Expert Patient Advocate / Ambassador
> Research Advocate / Ambassador
> Patient Advocate eyeforpharma (by Reuters events)
> Patients Like Me Ambassador
> Member of The British Rheumatological Society as a patient associate
> Patient Partner with PFMD & Envision Pharma (Freelance patient author)

Supporting:
• Fibromyalgia – FMAUK (Fibromyalgia Action UK)
• Ehlers-Danlos Syndrome & Hypermobility Syndrome - EDS UK (Ehlers Danlos Support UK); HMSA (Hypermobility Syndrome Association)
• Mental Health – Sunderland Mind, Mind, Time for Change, ReThink Mental Illness, many others
• ME/CFS – #MEAction
• British Skin Foundation
& many other Chronic & Invisible Illness, Chronic Pain disorders & Rare Diseases

I have lived with 25 - 30 yrs of chronic pain and dislocations with a long history of being told there was nothing wrong with me…. You should see the list now!
I have experienced many good things, and, many bad things in life but I do aim to look forward, be positive and not look back and I won't let any of it beat me if I can help it.

My primary illness is Ehlers Danlos Syndrome / Benign Joint Hypermobility Syndrome a genetic connective tissue disorder.
Other illnesses include CFS, Arthralgia, Fibromyalgia, varying skin disorders including Palm & Sole Psoriatic Eczema, IBS, Allodynia, Hyperalgesia, Anxiety/Depression, vertigo, migraines, hyper-sensitivities ANS problem, serious balance and co-ordination problems. Plus, a very long list of others such as symptoms that are illnesses themselves and their symptoms with vertigo passed down from my Grandfather which likes to play rough at times and that can be frustrating, like walking on marshmallows, ok when in the house but not outside. I can’t drive my power chair either when my balance and co-ordination are so out of whack. Imagine the carnage.
 My mobility is poor, and I use a power chair to get out and about and varying disability aids.
 I rattle when I walk.
 I enjoy dining out and going places when I’m fit enough
 I have a degree with honours in Glass Architectural glass and ceramics and a Business Masters MBS with honours after passing with Distinction.
 I became co-founder, with my friend Vicky, of FibroFlutters that is a support group for people chronic/invisible and rare illnesses with support groups for Fibromyalgia (FM/FMS), EDS HMS JHS HSDs & advice for many other associated illnesses like Chronic Fatigue Syndrome (CFS ) & ME ( Myalgic Encephalomyelitis )

We made the move to incorporate other Chronic & Invisible Illnesses such as EDS & HMS (Ehlers-Danlos syndrome / Hypermobility Syndrome), because as co-founders both Vicky and I both have different types of EDS. Also, Fibromyalgia is a chronic pain disorder, so we decided that we shouldn’t exclude other Chronic pain disorders either, or, all other related illnesses such as Gastric conditions like IBS, Mental Health needs for Anxiety & Depression, Gynae related conditions such as Endometriosis. Plus, a long list of others such as skin conditions too and inflammatory diseases like Psoriasis, after realising we need a multidisciplinary approach to our treatment, so, it made sense to be able to discuss all of our illnesses at group not just Fibromyalgia, which, usually, is not a patient’s Primary Illness.

I advocate for the Mental Health Mind Charity, especially my local one in Sunderland, Tyne & Wear, UK because they have helped me to learn how to live with my chronic anxiety & depression and provide a level of support that cannot be doubted or forgotten. They are still there for me today, and it was them that helped me to gain the courage to set up the group because many fibromyalgia patients have anxiety and depression problems and seek their advice about support groups. There are a good number of people in Sunderland with Fibromyalgia and it shocked me to be honest in the beginning.
At the time I was volunteering and advocating for a charity called FibroAction and so became a voice for the charity across the NE UK, this is because even though there were only 4 of us we spanned 3 counties LOL
Anyhow, FibroAction and Fibromyalgia UK (fmauk) merged and became Fibromyalgia Action (FMAUK) Uk so we now have a sister group, Sunderland Fibromyalgia Group, who we are working alongside to campaign at a local and regional capacity for Fibromyalgia.
As a unity of voice, we will be louder. :-)

‘If you’re feeling blue then fluffie cuddles are for you’ – Fluffmeister Extraordinaire

o A post I wrote on a Community Forum that ended up creating a fictional yet lovable character who dishes out fluffie hugs to people that need them. Fluffmeister had friends, and many adventures were had, and games played.
o My alter ego developed after realising hugging is quite painful for fibromyalgia patients and people with chronic pain/musculoskeletal disorders, due to the hypersensitivity to pain, so giving fluffie hugs was going to be more comfortable. Fluffmeister began life on a HealthUnlocked Forum that I no longer participate in, but, she still lives on Facebook and Twitter and well everywhere tbh.
o Fluffmeister Arts is my Artist name for the campaign posters and posts that I produce, and now also Flufferbies designed in accordance to Charity/Group/person’s choice of colours and/or tied to the colours in the logos.
o If I can make at least one person a day smile then I am happy.