About Us - Page 6 of 6 - FibroFlutters Patient Advocacy Organisation

About Us

Page 6

About Us -How we began – A flashback to the beginning

Back in 2014 I was undergoing treatment for severe anxiety disorder and depression through our local Mind Centre in Sunderland. In the year before after a 20 year-long battle I was diagnosed with Joint Hypermobilty Disorder aka Ehlers Danlos III with a side of Fibromyalgia. I’d already had confirmation of varying other long-term and chronic health conditions.

At this point there was a lacking of support groups for FibroAction, a charity that I became involved with in 2013 and still am today. I was approached a couple of times about the idea of setting up a group for Fibromyalgia so May 12th International Awareness Day for Fibromyalgia

***FibroFlutters May 12th 2014 first flier***

FibroFlutters was born under the c/o a fibromyalgia charity called ‘FibroAction’ now Fibromyalgia Action (FMAUK) and mental Health charity ‘Sunderland Mind’.

This is one of the main reasons why FibroFlutters, and myself personally, advocate for the Mental Health Mind Charity, especially our local Sunderland Mind because they have helped ‘me’, personally, to learn how to live with my chronic anxiety & depression and provide a level of support that cannot be doubted or forgotten. I, also, pay a monthly donation to our local Mind Centre to help support their cause.

They are still there for us today if anyone needs them.
It was them that suggested, and then helped ‘me’ to gain the courage to set up the group because many ‘fibromyalgia‘ patients have ‘anxiety‘ and ‘depression’ problems that seek advice about local support groups.

Visit Sunderland Mind website for information and advice via the button link below:

www.sunderlandmind.co.uk

You can call them by ringing this number
0191 5657218

Where are they based and where you can find them:

14 Norfolk Street
Sunderland
Tyne and Wear
SR1 1EA

Drop-in opening times

Monday: 10 am – 1 pm
Tuesday: 10 am – 1 pm
Wednesday: 10 am – 1 pm
Thursday: 10 am – 1 pm
Friday: 10 am – 1 pm
Saturday: Closed
Sunday: Closed

© 2018 Sunderland Mind We’re a part of Mind
We’re a registered charity (no. 1171734) and a registered company (no. ) in England

Charity ~ Fibromyalgia Action UK (FMA UK)

This link takes you to the FMA UK website
(formerly FibroAction and Fibromyalgia Association UK)

www.fmauk.org

In 2015 FibroAction and Fibromyalgia UK (fmauk) merged and became Fibromyalgia Action (FMAUK) Uk so we now work alongside other North East UK groups when campaigning and raising awareness.

It is 2019 and this year FMAUK are campaigning for people to #BecomeFibroAware

What Is Fibromyalgia?
‘Fibromyalgia is a chronic condition of widespread pain and profound fatigue. The pain tends to be felt as diffuse aching or burning, often described as head to toe. It may be worse at some times than at others. It may also change location, usually becoming more severe in parts of the body that are used most.’
This article has been extracted from the free Information booklet that FMA UK provides. To have this information presented in a professional A5 booklet, as well as the other articles please request one from the office.
From the FMAUK website

As a condition that affects thousands of people in the UK, and millions across the globe, raising awareness about the condition and how it affects the people who live with it is important. It is important to me as CEO of FibroFlutters too, to help get the message out there on behalf of those who do not have a voice to do it themselves.

You can read all about Fibromyalgia via this button link below.

FMAUK – What is Fibromyalgia?

**FibroFlutters is a support group working with FMA UK**

Giving support and being there for the community

There are a good number of people in Sunderland with Fibromyalgia and varying other long-term chronic conditions, actually, and it shocked me 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 with FibroFlutters members, and readers, this is because that even though there were only 5 of us we spanned 3 counties!

As a small group in the city we would meet once a month and chat about our fibromyalgia and it soon became apparent that there were more illnesses involved in our daily lives which also needed support. It was also clear that people could not make group meet ups because their anxieties mixed with chronic pain prevented them from leaving the house.
There was a difficulty recruiting members too, and supporting people who wanted it needed a new way of connecting because the only contact we had with each other was through telephone. We were not on Facebook only on Twitter which I was using for advocacy, raising awareness campaigns and general patient voice efforts. Even e-mail wasn’t working with a lot of people not using computers, only Facebook.

Not long into FibroFlutters Life I made ‘Vicky Green’ my Co-Founder as she was advertising us on Face book where I did not wish to have an account due to mental health anxiety issues. Plus, being diagnosed within months of each other, and being friends, it seemed a logical thing to do.
Along with Ian and Elaine we discussed our health and circumstances once a month, Sonia works so couldn’t make the meetings, but she was in touch via social media channels and Vicky. There were 5 of us for about 18 months deciding on things for FibroFlutters and early 2018 I decided that it was time for us to show off who we were.

We are now the ‘Founding Five Flutters’ and together we help to steer the direction of the local support group, and also work as individuals on our own interests regarding research and advocacy as we each have differing interests as well as all having Fibromyalgia, ME or CFS, with at least 3 of us also having a connective tissue disorder. Basically we are the old-style board room but with a modern approach.

Over the course of time we have developed into an organisation for all chronic, invisible and rare conditions aside from the local support group which we run as a ‘Five’. The support group runs predominantly online to support everyone affected by chronic illnesses, including family and carers. With our sister fibro group offering monthly meetings, guest speakers and external awareness drives we work to help them while we provide information and resources as well as online support for those unable to leave the house.

It is not easy work for either group to keep running and the efforts required can be stressful at times, but we still exist in tandem prevailing to provide the support people in our local community need.

It takes a lot of work and with the many profiles across social media, which I have solely run, I am in control of our social media network / chronic illness information and resources portal and as the owner I control the whole overall business matters of this website fibroflutters.com ~ Carole.

However, as a ‘Five’ we do work ‘Facebook’ as team with a closed group and a main page that we admin, with a few others, to help share advice, give useful tips, share a virtual hug and a cuppa, just listen to someone or just simply keep someone company during the hard times. Often people need to be pointed in the direction of reputed resources, research or where they can find help for other people in the family. It is all part of what we strive to provide.

I am usually kicking around on Twitter, but you can find me at a few places.

Carole Sian @scrufton73 OR @FibroFlutters

I’m often hanging out with good friend Sonia Hawkins, a fellow Founding Five Flutter and my eyeforpharma conference co-pilot @Hawkins65S

Please feel free to chat to us about your health.
We also have lots of health problems and are very much patient’s underneath despite all of our responsibilities.
Remember we’re not doctors or health consultants just regular patients like you.

As a unity of voice we are louder.

#patientvoice #patients #notjustpatients
#whywedoresearch #inspiredtogether #patientsincluded
#researchambassador #multidisciplinary #patientcentricity #PRA #D4D
#devicesfordignity

#research #healthcareproviders #HCPs #healthcare #socialcare #disabilities #pharma #science #technology #digitalinnovation #communications

Artistic Works ~ Header images & posters

History

A post I wrote on a Community Forum that ended up creating a fictional yet lovable character who dishes out fluffie hugs to people who need them. Fluffmeister had friends, and many adventures were had, and games played. My alter ego developed after realising hugging is actually quite painful for fibromyalgia patients 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.

Fluffmeister Arts is my Artist name for the campaign posters and posts that I produce for campaigning and raising awareness across Social Media Channels.

If I can make at least one person a day smile then I am happy. Fluffmeister is my alter-ego in the world of chronic pain, fibromyalgia, hypermobility & EDS/JHS/HSD’s and chronic illness in general and still likes to pop a healing fluffie hug on people’s timelines when I can see they’re having a rough day.~ Carole aka Fluffmeister / Fibrofly73