10 came, 11, 12, 13 – my symptoms weren’t going anywhere. If anything, they got worse as I hit puberty and now I had the joy of also contending with my period.
The hormonal changes at this age seemed to worsen my joint issues, with my pain than ever and my immune system was in an absolute state, with me catching a virus at least twice a month. I barely had time to recover from one thing before I started the next.
Teenage Years
At fourteen, I was referred to rheumatology by my childhood consultant and I had the first appointment where anything made sense. Within 5 minutes of the appointment I was diagnosed with fibromyalgia – explaining the constant pain I had in my skin, sore patches and strange sensations I could feel practically everywhere, all of the time.
I was also diagnosed with Hypermobile Ehlers Danlos Syndrome, which explained why my legs would randomly give way and why I had so much muscle weakness. Looking back, I’d always known to ‘crack’ my joints when they hurt and I had frequently relocated bones that didn’t feel ‘right’. Turns out these were dislocations and subluxes of joints. It’s also likely that the issues with my breathing and skin healing I’d had as a small child were linked with my hEDS diagnosis.
Off the back of this appointment and following concerns from my gastroenterologist, I was sent to physiotherapy and pelvic floor therapy, where I was indeed found to have very poor muscle strength which we worked on over a period of months. Although the exercises would help, they would cause me massive relapses and in the end it was decided that it was best not to continue these.
Around this age, I again entered a massive flare of my digestive problems, totally out of the blue. My whole digestive system seemed to freeze, with me being unable to eat more than a spoonful of yoghurt for weeks on end. I lost a lot of weight, and things got very concerning. I ended up being put on more laxatives than I care to list, and a liquid diet for several months to get my system working again. Again, this was put down to ‘lazy bowels’ and nothing further was done.
During this time, I wasn’t able to leave the house much, and ended up doing a lot of online art projects and joining groups. I started my first blog around that time too. It took me the next couple of years to recover from how ill I’d been at this time, and I would still continue to have constant knockbacks from viruses. When I was 15, I caught chickenpox – almost as soon as my spots came out, I then also developed shingles. This was awful and knocked me sideways – my skin is covered in scars from the spots that never healed (Thanks hEDS skin!).
Somehow, I managed to continue with homeschool enough to get through two of my GCSE’s and get accepted into college. By this point, it was 2017 and education facilities were expected to make more effort to be inclusive. I still had a fight to get a place, but the college I ended up going to was super supportive and helped me to thrive.
I became a much more active wheelchair user once I started college, as I was now out of the house more than ever. At first, I was determined to try and not use a wheelchair but quickly discovered that wasn’t going to work when on day 2 I collapsed while trying to walk down some stairs. I only attended college part-time and even that pushed me to the limit, but I loved finally being able do something a little more independently and thrived. I also caught every germ going through my time there and had many, many sick days. I like to think that maybe this helped my immune system though? Who knows!
Skipping forward a few years, I found a way to ‘manage’. I learnt that if I used my wheelchair, I wouldn’t dislocate so much in my lower half and I wouldn’t feel so much pain in my legs. Sitting for long periods helped me to avoid using the toilet, although I still frequently had bouts where I had to dash, or I’d get terrible UTI’s. Using my wheelchair also prevented me falling, stopping related injuries like banging my head which previously I would do a lot.
