My HMSA story

In December 2008, my partner proposed to me, and I was absolutely over the moon. I started planning my dream wedding for that July, only 7 months away, as we didn’t want to hang about.

I was really enjoying the wedding planning, but my right hand was really sore and causing problems for me at work. Painful joints were no stranger to me, I had struggled with pain since I was a child. Spraining my ankles so frequently, that one school year I didn’t do PE at all, and the teacher was convinced that I was lying to get out of PE. At 16, my back started to become really sore, and I tried dihydrocodeine for the first time. At 17, my wrist and thumb joint started hurting on my left hand, and I was told I had Repetitive Strain Injury, which then plagued me for years in both hands. At 20, my neck joined in, and I was unable to hot-desk at work and I had to have a set desk which was suitable for my needs.

So, my pain was no surprise. I went back to the GP again, who referred me to see my first occupational therapist (OT), Gina, who provided me with hand splints to wear at night. I was also referred for a steroid injection in my thumb joint to help with the pain. Within 12 hours of the injection the pain had started moving up my arm and into the rest of my body. Nobody has been able to explain this to me, and I have no understanding of why this happened. However, I was unable to drive to work. The GP prescribed me naproxen and tramadol for the pain and believed that I had contracted a virus. Gina, the OT continued to support me in many ways, she gave me walking sticks and supported my general wellbeing and helped me to deal with being a 26-year-old who was ‘disabled’ and no longer able to work, with a 2 year old child to care for and a wedding on the way.

Three days before my wedding, I was diagnosed with psoriatic arthritis and hypermobility syndrome and prescribed a strong steroid injection into one of my glutes.

Eventually, after seeing multiple rheumatologists, I was given the diagnosis; hypermobility Ehlers Danlos syndrome (hEDS) and fibromyalgia.

I managed to meet the HMSA team at a rheumatology conference in 2003, and I was amazed by the positivity of the charity as a whole, and I very soon joined up as a volunteer. I found that I had been focusing all of my energy on the ‘fibromyalgia’ part of my diagnosis, and I hadn’t given much thought to the hEDS one.

My fibromyalgia went into remission, and I lost a significant amount of weight quickly, which also in turn made my joints very unstable. I was very lucky to have the support of the HMSA team around me, who helped me to make sense of what was happening to my body. I was waiting for surgery on my hip, and another volunteer local to me was also waiting for the same surgery, so this helped.

The HMSA volunteers also understood another big part of my life; my son was autistic and was also diagnosed with hEDS. The support and understanding from the volunteers was fantastic. I felt like I had found ‘my people’.

I attended the rheumatology conference again, but as a HMSA volunteer, which I really enjoyed, as I had a supportive team with me. I also attended the HMSA conference and I helped with the children’s programme, which I really enjoyed. While I was at the conference, I was able to meet Jo, who was studying occupational therapy. Speaking to Jo made me realise how much I wanted to be an occupational therapist, if I was physically capable.

I got home from the HMSA conference, and I looked into studying occupational therapy, but I realised that I just wouldn’t be able to go back to university at that time. I was devastated.

I continued as a volunteer, and I was supporting the helpline which I enjoyed, until my son was born in 2015. I stepped back from my volunteering roles then. However, I have remained a member of the charity since. I have gained some amazing friends from the HMSA, who I regularly keep in touch with, despite no longer being a volunteer.

My time with the HMSA really helped me to learn about hEDS, which allowed me to improve my physical health so much, that in 2020, I started my Occupational Therapy BSc degree. I am now halfway through. I have also had an additional child, who is about to turn 4. My almost 7-year-old, was diagnosed with a hypermobility syndrome when he was 2, and Raynauds when he was 3. So, like his big brother and I, he will have hEDS, and has been on a waiting list for autism spectrum disorder and attention deficit hyperactivity disorder for over 2 years as well. But I know that thanks to the HMSA, I have all the tools and support that I need to get through it.

Volunteering with the HMSA was one of the best things that I could have done, and it helped me with my confidence, gained me friends, knowledge and understanding. It also just helped me feel ‘normal’.

I most certainly wouldn’t be where I am now without the HMSA, and I thank you for that. If you are considering volunteering, even if you have 2 hours per month, give it a go – you won’t regret it. I certainly plan to come back as soon as I have graduated. Wild horses won’t keep me away!