Jackie - Age 46 from West Sussex, UK
Having been diagnosed with Crohns’ in my late teens, I have spent the last 30 years trying to manage my condition and all the side effects .
I live with constant joint pain in my neck, shoulders, elbow, lower back , hips, knees and ankles. So nearly everywhere!
I also have nausea, constant diarrhea causing piles and fistula resulting in abscesses.
I often have to use the toilet up to 30 times a day and not be able to sleep at all until the tummy has settled.
I get brain fog, trouble concentrating, headaches and migraines plus dizzy spells, as well as digestive issues. I have had multiple surgeries, and have to take lots of medication including two different types of immunosuppressants .
Living with a chronic illness - symptomatic hypermobility is challenging, especially when trying to work. Raising a family leaves me feeling like I'm not doing enough, everything revolves around how much I can manage to do. If I do manage to work then I can't do anything at home, so my partner has to do so much.
My children have grown up always having to be aware that mum is poorly.
I feel guilty and feel as if I am failing as both a mother and partner.
Plus I feel the loss of my independence and dignity.
I was always wary of trying exercise or even going outside due to my issues.
I had tried Pilates years ago but it backfired and caused me more pain.
I have been very lucky to have received support from SEDS, the symptomatic hypermobility group and I was recommended to try Pilates with hypermobility specialists in face to face sessions.
For the first time in years I was able to move without hobbling. I have been shown ways to help relieve some of my pain through movement, as even some medication does not fully work.
I would never have tried this on my own as I can't afford to spend money on things that don't work, or just don’t feel I should do, but now I really feel more confident and people have noticed a change in my mental attitude.