I was always pretty ‘good’ at gymnastics as a kid, being bendy with very hypermobile hips and shoulders I could do the splits easily and pretty much skip with my arms as if they were a rope! It seemed like a good party trick for years but I never had the real strength to progress and didn’t have the best spatial awareness... always falling over as a kid; I was clumsy, dragging my feet, constantly sleepy with regular upset stomachs, hard to wake and slow to keep up with normal people. Sadly this put me in the ‘lazy’ bucket in my parents and PE teachers minds. Once I hit secondary school and gave up the only thing that was helping my muscles stay strong (gymnastics) everything seemed so hard, I would do anything to get out of sport. Last to be picked for teams, mostly useless at anything remotely sporty, I dreaded anything athletic as it just exhausted me, I soon believed what I had been labelled most my life; I was embarrassed for feeling so weak and feeble and tired all the time.  I must just be lazy no matter how hard I knew I was trying.
I continued to have constant unexplainable complex ‘issues’ over the years that so many of us with EDS have but by this point I’d been labelled a hypochondriac by most my family and the doctors I turned to for help.  Once a teen I was brushed off as some kind of hysterical hormone driven teen, then it was put down as PMT woman...
Things started to go really wrong when I got to about 40. I had well and truly shaken off my ‘lazy’ title by that age having had a successful career as a respected, hard-working IT Manager. I had worked my backside off for years to prove everyone wrong that thought I was lazy but the headaches, ‘IBS’ and joint pain just continued to get worse.
The harder working I was, of course, the less I looked after my own health. Once hormones kicked in and ‘age’ crept in; the palpitations, dizziness, sickness etc were starting to impact every part of my life and my pain levels were going through the roof, I was living on paracetamol and Ibuprofen at two-hourly intervals just to get me through the day but that was clearly unsustainable and didn’t even really help much. (Nor did the codeine or Tramadol I eventually got prescribed to be fair!). Another break down after being fobbed off at the doctor's office alongside the luxury of having private medical insurance through work I persuaded my GP to refer me to a rheumatologist who just happened to be in the army with Professor Rodney Graham. He quickly diagnosed me and suggested I get to a specialist in Professor Graham’s team to get the right support, I did a bit more research once home and soon found a paper on ‘joint hypermobility Syndrome’ by Dr Alan Pocknicki and like every other sufferer who has that lightbulb ‘this is me!!’ moment, I was ecstatic with relief finally to know I wasn’t going mad, I wasn’t just lazy. I had a real medical condition causing the list of what seemed like completely unconnected issues...
I soon worked out of course, that it also meant there was no magic cure, pills or solution to my symptoms. Even after seeing all the experts famous in our community, having confirmed Hypermobile Ehlers Danlos Syndrome or ‘(h)EDS’ I spent the next few years on the medical merry go round trying to find ways to help ‘manage’ my symptoms but my back pain just got worse to the point I was walking with a stick and it seemed no matter how many pills I took, how much physio, Hydrotherapy, swimming and Pilates I attempted the pain never let up the other symptoms continued with a vengeance and the doctors all gradually faded away as the health insurance had enough of me and most had got to the ‘there's not really anything else we can do for you’ stage you get to with EDS.
While all this carried on; the agonising migraines from anything from trying to exercise, POTS, Chronic migraine and my Chiari malformation to boot stopped me completely. I had to go off sick from work and have never managed to get back to doing any more than two half days a week since. My party days were well and truly over, I was getting scared to leave the house for the pain and misery it caused.
I did everything I could to help myself, I followed all the advice, tried hard to ‘pace’ (why is that STILL so impossible to manage??!) I changed to a plant-based diet (best thing I ever did!) which gave me a slight extra edge of energy to push me to work harder. On the days I wasn’t working I dragged my backside to the gym (migraine and general illness permitting) I was determined my career wasn’t over, I’d worked too damn hard to lose everything and I wasn’t going to let my body fail me now.
One thing my EDS has never taken from me completely is my spirit, drive and that constant memory and nagging of being blasted as lazy. I knew if I didn’t push myself to keep moving I’d soon fall into the despair so many of us do where we can’t drag ourselves from the bed, I knew from my research, psychological support and expert advice I just HAD to keep trying.
Over three years now of consistent attendance at the gym, amazing support and advice from a specialist physio who encouraged me gradually from Hydrotherapy to swimming, then from swimming to walking on the treadmill and using the exercise bike, I was starting to get more consistent, and with a bit of weight loss I felt I could get my strength if I just keep moving. Then after a mini-op on my toes, I was told I couldn’t swim for a few weeks. The crazy slow healing of EDS skin which led to an infection meant I haven’t been able to swim for 4 months now but after I’d started to finally make some progress, I knew I had to keep doing something so started attending more regular Pilates classes. Although I STILL can’t do a sit up, the old girls there are much stronger than I am but not having to sit on the floor of the shower after exercising was a huge win and I was starting to be able to walk the short distance to the shops or my office from the station without the immediate agonising pain I had felt getting worse for the last few years, finally after all my efforts the hard work is finally starting to pay off!
I know I’ll never be ‘well’, I’m always going to suffer from pain, horrible headaches and all other fun co-morbid symptoms pots, Chiari, diverticula disease etc EDS brings  but I know I am better at managing my symptoms now, I have accepted my limitations and know I have to keep at the exercise and pacing forever to keep me moving but as long as I’m moving I’m winning as far as I’m concerned. You can read a whole lot more through my poems   Here https://facebook.com/PoemsbyVictoriaPayne/
Don’t ever give up. It may take years but it really is worth it, to know you’re doing your best. It’s worth every bit of effort to just keep moving. Once you stop that’s it, game over.  Stay #HMSActive