STILL HAVE TO LIVE WITH IT.

Next month I shall be 57 years old.
At the age of 5 I realised I was double jointed, as it was known back then, when I did the perfect splits in a gym class and my teacher had a look of astonishment on her face!
"Did you know you could do that Christine?" she asked in amazement.
I shook my head, suddenly shy of this attention, I had no idea I could do the splits, I was the only one in the class who could manage the move.
By the age of 10 I often went to school with my legs bandaged tightly from ankle to thigh. My knees would swell up and be very painful, Mom would take me to the doctors who would pronounce "housemaids knee". He would advise my Mom to put on a tight bandage, all the way up the leg, to take down the swelling! As you can imagine it was very difficult to walk, I could barely bend my leg. As you can imagine the other kids laughed at me, kids can be cruel. Nobody bothered to ask me why I was swathed in bandages, nobody realised I was in such pain. The doctor never thought to refer me to hospital to a specialist, to find out what was happening to me.
The swelling would eventually subside (after all, it had nowhere to go) until the next time.
I overused my joints as a child, well I did not know that later on in life I would have regrets, and so I would do my party piece, wrap my legs around my neck, splits, high kicks, I could even put my legs over my shoulders and walk on my hands! I could not only touch my toes with my legs straight, I could bend right over and put my hands flat on the floor, then a bit further until my forehead was on the floor, knees still straight!! Well actually I know now that my knees were not straight, they were bending the other way!
My knees would swell regularly and I would be back in the bandages, I would fall over when my hip gave way suddenly, without warning. Even then no adult tried to find out a reason why. 
By my twenties I had lost 3 babies, the doctors said it was my hormones but I now wonder if it was due to my hypermobility. To hold on to the two babies I managed to give birth to, thank God, I had to rest all through my pregnancies and was given hormone injections, one a week for the whole 9 months.
Giving birth to my first baby, my wonderful son, I had an epidural, not at my request but because my blood pressure was very high. I kept telling them I could still feel the pain, though not quite so bad. They did not believe me. I know now that with EDS hypermobilty it does not always work.
Towards the end of my twenties I started to get stuck when I bent over, I would bend to reach something from a low kitchen cupboard and get stuck, often having to ask my now 7 year old son to help me straighten. I laughed it off, not wanting to frighten my children, `silly mum got stuck, oh dear!`
In my thirties I heard the word hypermobile for the first time, and learnt it was the same as double jointed. My doctor said I had hypermobilty syndrome and that my overused joints would be prone to arthritis. (No kidding!) Already my knees were gone, I was told I would have to have replacement knees eventually, but as I have since discovered, would the operation work properly?
In my mid thirties I had a fall, black ice on the pavement just along from my house, I went down heavily on the base of my spine. I struggled to get up, the pain incredible. I managed, I don`t know how, to get back to my house. I called work "sorry I can`t come, I fell and hurt myself." Little did I know I had ruptured two discs in my spine, oh the pain.
I have never been the same since.
Gradually, over the past few years, everything has got so much worse. My back is painful all the time, degenerative disc disease I am told, my hips have now joined the party, becoming so painful when I walk that I could cry. My knees are gone, crumbling, creaking and groaning, swollen and misshapen. Other joints are starting to give me trouble now, my hands hurt, my ankles give way, my shoulder gives me pain when I move it in certain positions. Even my jaw can get stuck when I yawn so I must be careful!
I have problems with bowel and bladder, told I had IBS many years ago, this now seems to me yet another problem caused by EDS hypermobility syndrome, or perhaps both? I daresay lots of other things can be attributed to it too, more research needs to be done.
At the age of 49 I was diagnosed with breast cancer. Nothing to do with my hypermobility but even this has consequences. I had chemotherapy, radiotherapy and herceptin. I took tamoxifen for 5 years but now my hormone drug has been changed, to one which can make arthritis pain worse. Boy has it made it worse! I feel that I have to take it though, I was told it is to give me a better chance, after all I certainly don`t want a return of cancer, that thought terrifies me, and so I take the drug, and cannot walk far whether just as a result of the side effects or because of my worsening arthritis I don`t know. Maybe both.
Hypermobilty syndrome has now been reclassified as EDS hypermobilty, which used to be EDS 3. Not that a big name helps at all, those of us inflicted still have to live with it! The invisible illness as not all sufferers use a wheelchair all the time, nor walk with an aid, yet they are in pain, but it does not always show.