I am hypermobile. I have hypermobility. I have hypermobility autonomic dysfunction. I have EDS. I have been properly diagnosed for 18 months and I still don’t know the correct terminology but where I am at now is a good place compared to where I was two years ago.
Basically the correct explanation for hypermobility (according to good old Google) is:
“The joint hypermobility syndrome is a condition that features joints that easily move beyond the normal range expected for a particular joint. Hypermobile joints tend to be inherited. Symptoms of the joint hypermobility syndrome include pain in the knees, fingers, hips, and elbows.”
Yeah right! Whatever! It seems that it changes everyday as it is a relatively unknown health condition. I’ve taught my doctor a thing or two and we have learned together. I am lucky I have a doctor who entertains me and my thoughts.
To give a brief overview of where it all started for me…..
Let me take you back to 1998. I was 16 and hanging out with my friends til all hours at the local park, come rain or shine we were out and about having the time of our lives. It was about this time that my hands started turning black. I would get so cold, colder than you can imagine, the type of cold where it can take days for me to get warm and it hurt. It only really happened in my extremities so think hands and feet but also my nose and bum too. My mum whisked me off to the doctors who referred me to the hospital. They doctors there told me that I had Raynauds Disease and that I am Hypermobile. They then told me to take an asprin everyday as they pushed me and my worried mum out the door. That was that. No other information.
Over the next 14 years I continued to suffer with the cold but I just learnt to deal with it. Luckily my hands stopped turning black but I would suffer from aches and pains, discomfort and mood swings. I just assumed I had a low pain threshold, was sensitive and was more vocal about issues than others. Surely everyone else had the same aches and pains but just moaned about it less than me? I lived a normal life, worked full time, travelled here there and everywhere and was extremely independent. Then everything changed. I turned 30.
I don’t know about any of you over the age of 30 but I was distraught about leaving my 20’s behind. I felt (and still often do) that I was 21 and that I only finished school 3 years ago. My Birthday came and went, then I got made redundant from a job I adored in June. In July we went to Turkey. Whilst there I injured my back quite badly on a water slide. Walking was painful and sitting in a chair was almost impossible, I muddled through and slowly things started feeling better. In September we embarked on a 2 week road trip through France and Germany and popping in to Switzerland for the day. We camped in a tent and drank French wine watching the stars. We moved on every few days and everything was going amazingly until I got food poisoning and was hideously ill (yep, hideously ill in a tent with no toilet nearby eughhh). Yet again I muddled through and luckily checked in to a hotel to recover nearby the next day. Thanks to fantastic over the counter German meds we were able to finish our trip on a high!
It was now October and I was about to start a new job at a corporate company – one of these ‘Sunday Times Best Places To Work For’ places. As I sat in reception waiting to start my first day I reflected on the previous few months. I needed this job, I wanted this job and these little out of character mishaps needed to be over with so I could just get on with my life. The job started well and I was enjoying the challenge but I couldn’t keep my eyes open. I wasn’t tired, nor was I ill but put me in a boardroom or a classroom and I would be asleep. I got pulled up on it more than once and I was so embarrassed, I didn’t know what was happening.
It’s November now and I am in full swing at work, we decide to take a well earned day off. I get up that morning and head out of the bedroom to the bathroom which was downstairs in the house. I stand at the top of the stairs and decide that I must tidy the hallway up today, then, out of the blue I become dizzy, so dizzy that it feels like my head is rolling around on my shoulders. I realise then that I am heading downstairs, towards the tiled floor head first. I hit the walls with my head on the way down, everything is happening so fast but so slowly too, I can see everything but it is blurry, then I smack the floor with the side of my face, then nothing. I wake up screaming for help, Simon rushes downstairs and is trying to bring me round at the same time as trying to figure out what my injuries are. That day is the day my life changed forever…..