Wednesday, 7 March 2012

A post from my other Blog

This is a copy of a post from my other Blog, which is primarily a crafting Blog, but I thought you might find it interesting...........

This is a different kind of post. Mainly as I have just popped over to a fellow sufferer's blog, and her pain has bought mine to the fore as it were.
This is MY story, and MY blog.
I am nearly 44, I have a rare genetic condition, and I am now a Disabled Blogger Crafter.
I used to play Hockey, at one point for 3 teams at the same time.
I used to be a Police officer.
I used to be a Supervisor.
I used to be an IT Specialist.
I used to run my own business.
I used to be able bodied.
It was hard being able bodied, and I didn't realise that for a lot of you reading this post, that being able bodied means you DON'T have pain 24hrs a day.
I have always had pain.
You go over on your ankle, you go to the doctors and rest.
I go over on my ankle, I keep on going, I don't rest. Going over on your ankle is Normal for me.
I suppose the reason that I am writing about this now is the fact that I have re-connected with a lot of my old school girls. And I wonder how they will see me. I went to Convent schools all my life, and I went to Boarding School, and Finishing School. A lot of my school friends will have and are having very successful Careers. What do I have? A broken body, 3 lovely children, and a wonderful Grandson.
When I go to the re-union in May, I will go in on a stick, with splints on my hands, arms and fingers, and a belt holding my ribs together. How will they see me? Will they see the me they went to school with who was Games Captain, who played Hockey for 3 teams at the same time? Or will they see a broken woman and wont know how to talk to me?
Physically I don't look too bad, I suppose. Slim, a bit grey, but no major wrinkles. I look well. But I'm not.
I have Ehlers-Danlos type III. I have ALWAYS had Ehlers-Danlos type III. When I played Hockey my back hurt, my ankles hurt, I even played nearly a full Hockey match on a badly sprained ankle with a Green stick fracture to my toe. ( I stuck my foot in a rabbit hole). Hurt is normal.
For years I have fought to find out why I seem to hurt and injure myself more than other people. I have been listed as a Hypochondriac, attention seeking, psychosomatic mother. By People who SHOULD know what they are seeing.
Because I look okay, I am dismissed. Ehlers-Danlos is an Invisible condition. Its not going to kill me, as a direct result, and there's no cure for it, so just ignore it and it'll go away.
When I was 38, I went to see a rheumatologist. The Rheumatologist.......hmmn, that's an Old peoples doctor isn't it? The Rheumatologist Diagnosed me as Hypermobile. No more information, other than I would pull and sprain more easily than most. What I didn't realise at the time was that she had marked me 9/9 for bendyness. 9/9? Its a scale used to diagnose the condition Ehlers-Danlos. 4/9 and upwards is Ehlers-Danlos.
I carried on, I knew no different. My son was diagnosed Hypermobile, but as he is also Dyspraxic, we didn't think any more about it. My Daughter was diagnosed Hypermobile. She isn't Dyspraxic.
Hold on a minute.......... 2 kids diagnosed with being Hypermobile like me?
How come?
I looked up Hypermobility. Its genetic. Its a deformation of the Collagen producing Gene. It means that your muscles, skin, ligaments and tendons are too stretchy. And that your Cartilage is too Fragile.
I pushed to see a specialist. I went to see one in Leeds. I was diagnosed with Ehlers-Danlos type III. Hypermobility is now thought to be a mild form of Ehlers-Danlos.
But how did I get it? It turns out that my Dad is Hypermobile, he was a champion Hurdler, and my Mum, who died before we knew all this, had Ehlers-Danlos.
By the time we realised all this my Daughter had nearly died giving birth to her son, because of Ehlers-Danlos. Now she's pregnant again, and petrified.  Tomorrow I have to accompany the mother of 4 Ehlers-Danlos children to the school, to force them to Statement her Ehlers-Danlos children. Then I have to hurtle up the Motorway to be with my daughter, while we fight to be put into Consultant led care for her pregnancy, to try to prevent her death during Childbirth.
The lady who started this post off, has got to go to Hospital to have her trachea stapled into position, to try to stop it collapsing even further next week. I know how she feels. I have a specially written note downstairs by the phone for any poor ambulance man who comes out to me. I have dislocating Vocal chords, and if both dislocate at the same time, I am in danger of drowning myself in my own saliva. There is nothing they can do for me, no last ditch attempts, nothing. If they try to operate and pin things in position, as my cartilage is so fragile, its just going to tear right out at the first swallow. My ribs are now in 6 pieces, as the cartilage between the ribs has torn, and cant be repaired as its too fragile.
I cant be intubated. In case it tears the cartilage. I can only undergo a tracheotomy to preserve my life, provided it doesn't tear straight out, as the cartilage is too fragile. If I can make myself heard on the phone with dislocated vocal chords, before I drown in my own saliva.
So what do I do?
I make cards. I make cards to pass the time, to forget the pain, to not think about it. I make cards when I cant sleep. I make cards when I hurt, to forget.
I am still me, and will always be me, but sometimes I wish I wasn't. I know there will be one particular lady who will read this and understand, and maybe phone to talk to me, to come to terms with this herself. I know there will be friends who will read this and feel saddened by what they read.
Don't feel sorry for me.
Feel sorry for those who know there's something wrong but cant get the help they need.
Feel sorry for those who have Ehlers-Danlos but don't have a Doctor that knows enough about it to recognise what they are seeing.
Feel sorry for the children who inherit this condition. Like my three children and my Grandson.

So what will my old school friends see?

This is going to be hard to push the publish button, I have read and re-read it over and over again.
Its the truth, not a plea for sympathy.
Its who I am. Its who others are.
I am not publishing this for Sympathy, I am publishing this for those who need to know there are others who understand.
Who need YOU to understand.

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