Jackie had spent all her life in pain, mainly starting from her teen years. She experiences constant pain in her neck shoulders, elbows, lower back, knees and ankles. Jackie also often felt nauseas, had diarrhoea and complained of having brain fog, trouble concentrating and migraines. This combination of factors meant Jackie felt very anxious going out in case she experienced too much pain to make it back home afterward.
“I stopped exercising as even doing gentle Pilates in group classes backfired and gave me huge problems. Going to Musculoskeletal (MSK) health services didn’t help either. I gave up on full-time employment and then even part-time work. Without a diagnosis, I didn’t feel disabled. My children were used to me being poorly. I spent a lot of time doubled up or just slumped in bed completely exhausted.”
Jackie came to SEDSConnective and they listened.
“I was stubborn, so it did take a while to believe SEDS. I felt guilty too as I would never use our little money to do something just for me but taking their money seemed bad. SEDS said I was entitled to it and kept recommending tips and tricks. In the end, I thought well if it worked for some people who also had my issues then maybe I could try it. I did, very very nervously. I have worked out a way to relieve some of my pain through movement. That not all pains are ‘bad’, like muscle ache if being used. I do need so much medication to relieve pain.
People have noticed a huge difference. I’m much more confident, in fact, my family are now coming to terms with a much more out-there mum and I might even go back part-time to my work. I think my mental attitude has improved too. It’s still a learning curve and my body naturally works in a different way, so I do need this ongoing work, but I also relish the camaraderie and fellow experiences of the others my age, with peer-to-peer meetings and the expert webinars. My oldest daughter is now benefitting from this too and finding she is standing out so much less with her problems, as she’s finding more people are her age too.”
SEDSConnective are the first neurodivergent symptomatic hypermobility multi award winning charity which is voluntary led by experience. The group improves and actively supports the lives of people with Symptomatic Hypermobility, EDS (Ehlers-Danlos’ Syndrome), Hypermobility spectrum disorder (HSD) and Neurodivergence (primarily autism, ADHD, dyspraxia, Tourette’s syndrome) and associated conditions, supporting families and carers, in health, education, social care, employment, and transport accessibility.
SEDSConnective received a grant of £4,500 earlier this year from the Rooney Foundation Fund to run weekly activity support sessions with specialists including online therapy activity groups.