I coordinate a support group locally where I live, for fellow sufferers with ME CFS and FMS. My hubby and I in the desire to have more contact with people who had similar Chronic conditions and wanting to support others as best we could started the group back in May 2013. We had wanted to start a group for a while but it wasn't until I found the group FMS/ME /CFS awareness Ni did that become a reality. David Moore had started this closed group in Jan 2013 and had started a support group in Limavady (near the north coast of Northern Ireland). The Facebook group was great where you could chat away to others, ask questions and feel normal.
As David and I chatted about chronic illness issues and running a support group, I became more confident that it was something my hubby and I could start down here in Co. Down in our locality. So we plunged right in and started holding meetings in the local town. I love being part of the group and it's been amazing the amount of support the group gives each other and the honesty of fellow sufferers is a breath of fresh air.
It has been hard at times to keep gong with this but as time has gone on our motivation increases and the rewards are fully seen as we have seen great opportunities to raise the profile of ME ,CFS and Fibromyalgia through events and local newspaper coverage.
Our latest opportunity was just two weeks ago when we were invited to the local council in Banbridge,,,,for a reception hosted by vice chairperson of the council Hazel Gamble. With a bit of liaising with as many people as we both knew suffering from ME and Fibro we managed to get a crowd together. Everyone was really looking forward to the night.
We had a surprise visit from the health minister of Northern Ireland Edwin Poots and he said a few words at the beginning . We then had a lovely meal,,, followed by my favourite dessert pavlova. Hazel organised for some of us to share our stories. Everyone spoke from the heart,,,I was the last one to speak and was so nervous that I nearly collapsed at the podium. I shared my own story but also shared that it was time we saw these chronic illnesses in the public domain and urged everyone to do as much as they could to raise awareness for 12th May,,,International ME/CFS/Fibromyalgia awareness day. Hazel ended the evening off with the perfect opportunity to thank her Mum and Dad who were present for all their care and support when she was at her worst with ME.
I was exhausted after that night but the battle was worth it. We got our photos in the paper and more awareness has been raised. Councillor Hazel Gamble was approached to write her own story and did a great job sharing it in a local paper. All it takes is a few of us to stand up for what is right and name and shame these chronic conditions. It is then that people will learn and realise that this is real life. We couldn't make up the stories of our lives even if we tried,, this is the reality of our suffering. Time to make these chronic conditions visible!!!!