ME/CFS AUSTRALIA (SA) INC
Registered Charity 698
PO Box 28,
South Australia 5007
North Terrace House,
19 North Terrace,
Hackney, SA, 5069
1300 128 339
ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
ME/CFS Australia (SA) Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
Chronic Pain Doesn't Stop David's Plans For Charity Expansion
Monday 1 February 2016
Chronic pain doesn’t stop David’s plans for charity expansion
David suffers from the condition known as fibromyalgia syndrome, a poorly understood medical condition that causes severe pain, extreme tiredness and a range of other symptoms.
Fed up with the lack of support available to sufferers of the condition in Northern Ireland - and the North West in particular - the local man decided to found a support group.
Almost exactly three years later, the support group has grown to become a fully registered charity with plans to set up a dedicated advice centre in Limavady.
David explained what life is like for people living with fibromyalgia: “It is there, 24 hours per day, chronic pain from head to toe. On a bad day it takes me half an hour to get to the end of the garden. On a good day I am able to get out of the house and do my shopping. People will see you in Tesco and assume everything is okay but they don’t realise that just because you look okay on the surface that really you are struggling with everyday life because of the pain you are living with every day.”
Speaking about the charity, David said: “Things have been going pretty well. We have relocated the shop to somewhere that we will be seen a lot more, we will be more visible to people. We are at number 2 Catherine Street, beside Sunflower. It is a much better location for us. We have been there now for three weeks and we have noticed a big difference already. We haven’t got our signage up yet but we have still noticed a big difference. It is a much bigger place for the shop to be and we have an upstairs that we hope to convert to an advice centre in the future.
“It has been just over a year now since we first got our charitable status. It is quite a large expansion for us in a relatively short period of time. We are being noticed a lot more since we’ve moved. I think it was about the right time for us to bite the bullet and make the move.
“We have a lot more people coming in, even for a nosy around the shop and they are finding out a lot more about fibromyalgia.”
The charity is about more than raising awareness, as David explains: “The support group is going three years this month. In general I think people are actually starting to talk about it more instead of hiding away from being open about it and saying that they have it. I’ve had to put a helpline into the house for people ringing, looking for advice, a bit of support or even a general chat.
“Maybe they are feeling down. We will chat and sometimes they give tell me how they really are. I’ve had to talk people down who were at the brink of suicide.
“I have been quite open with my own experiences of fibromyalgia - you have to be to be quite honest with you. To run a support group and to run the helpline, you have to put yourself in everybody else’s position too. I speak openly about my own struggles with it and it seems to ease everybody who is looking for support when they see that they are not the only person facing that struggle from the illness.
“Okay, these people are reading from textbooks and one thing or another but having somebody there that has the condition for people to get in contact with, it has been a great help to them according to the feedback I get.
“Here in the UK, it is very lackadaisical when it comes to information. There is a group over in the mainland UK who are quite big but there are only ourselves and a group that works up in Belfast. In and around here and the North Coast it is unbelievable the lack of support that is out there for people.
“I think that is one of the reasons we have been able to expand so quickly - the demand is there and there is no provision of any sort of support for people. We have people coming to our coffee evenings from places like Ballymena and Antrim.
“There is a total lack of provision for fibromyalgia patients in this country. There are no specialists for fibromyalgia patients in NI. Diagnosis wise, there is still no blood test or X-ray test that could show it - it is all done by elimination of other conditions.”
David also paid tribute to the team of volunteers who have helped the charity expand as it has done.
He said: “It is not just myself, it has been a team effort with the committee members and the volunteers we have. You have the chairperson Victoria Brownlee, Elaine Hart who is deputy-chair, John McLester who is treasurer, Benny Hart who is fundraising manager and Elizabeth Moore who is the manager of the shop. Every single one is a volunteer. Without the help of everyone we wouldn’t be anywhere near where we are today.”
Fibromyalgia, also called fibromyalgia syndrome (FMS), is a long-term condition that causes pain all over the body.
As well as widespread pain, people with fibromyalgia may also have: increased sensitivity to pain; fatigue (extreme tiredness); muscle stiffness; difficulty sleeping; problems with mental processes (known as “fibro-fog”) – such as problems with memory and concentration; headaches; and irritable bowel syndrome (IBS) – a digestive condition that causes stomach pain and bloating.
The exact cause of fibromyalgia is unknown, but it’s thought, according to the NHS, to be related to abnormal levels of certain chemicals in the brain and changes in the way the central nervous system (brain, spinal cord and nerves) processes pain messages carried around the body. There are also suggestions that it can be more likely to develop due to genetics.
The above originally appeared here.
blog comments powered by Disqus