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Monday, February 27, 2012

A different kind of Post

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.

14 comments:

JoZart said...

What an amazing emotive statement and how very brave of you to write so movingly on your blog. It is all new information to me as I have never before heard of Hypermobility or Ehlers-Danlos and I am so moved by your strength.
I can only wish you good luck for your treatment and day to day life. I cannot begin to understand all you go through but hope somehow, someway it can be easier for you.
With love
JoZarty x

sassy said...

i have read your post...i think you are so brave not only to have pushed the publish button but just to let others know that not all thngs are as they seem i suffer my aches pains every day i nearlly lost my life in March 2011 i struggle to work i fid it hard to cope and yet no one knows how i feel..as nothing of my illness shows on the outside but i have nothing wrong with me compared to you and yours but yet its not sympathy i feel but empathy for you..but who is this very brave lady so its just pure admiration i feel towards one very brave..clever human being..what will you friends see..if they are your friends they will see you if not then thats there problem..does that sound harsh...you are inspiration to others..you are the talking truth of a unseen illness..you are brave ..you are loving...if i or you had one wish..well what would we wish for?
love and gentle hugs sassyx

BlackPumpkin said...

I know what you are talking about. During the last 25 years I can't remember one only day without pain. I live with painkillers in my pocket. Mine isn't a major disease, but my back and neck are always hurtingbecause of my bad Scoliosis, I suffer from Endometriosis and Cervical/Migaine. It's not that I cannot do things... I don't surrender to pain.But sometimes it's very hard to get up from bed and go to work. Then I think about a friend who died recently. She had Multiple Sclerosis for 30 years.... There's always someone feeling worse. And tis gives me the strenght for going on.
I'm going to check out for your disease. I've never heard about it before. You must be a very strong person, dear. I hope you have a less painful day, today. Hugs!

Clare said...

Thank-you for sharing this, it must of been hard.
I am disabled and in pain due to my MS (multiple sclerosis). I look at this disease changing my direction rather than stopping me. I have stumbled upon the wonderful world of creating online and have made many new friends.
I too was active then Bang! nO longer able to anything, even walking is a challenge but I like challenges. :) I now will educate myself on this disease as I know very little about it.

Thankyou once again for sharing this.

Clare ( http://www.clarecards.blogspot.com/

Clare said...

Thank-you for sharing this, it must of been hard.
I am disabled and in pain due to my MS (multiple sclerosis). I look at this disease changing my direction rather than stopping me. I have stumbled upon the wonderful world of creating online and have made many new friends.
I too was active then Bang! nO longer able to anything, even walking is a challenge but I like challenges. :) I now will educate myself on this disease as I know very little about it.

Thankyou once again for sharing this.

Clare ( http://www.clarecards.blogspot.com/

Clare said...

Thank-you for sharing this, it must of been hard.
I am disabled and in pain due to my MS (multiple sclerosis). I look at this disease changing my direction rather than stopping me. I have stumbled upon the wonderful world of creating online and have made many new friends.
I too was active then Bang! nO longer able to anything, even walking is a challenge but I like challenges. :) I now will educate myself on this disease as I know very little about it.

Thankyou once again for sharing this.

Clare ( http://www.clarecards.blogspot.com/

applejack cards by sue said...

Mornin' Lou, I did try to email you yesterday after reading your post...I guess I went over the 300... and it just cancelled itself out. I live with conditions I wouldn't dare put into print for fear of rejection so I am so proud of what you have achieved and how you have written about your condition. I hope this is being a good week for you. sue x

Linda said...

My Dear sweet friend Lou, what an emotive piece to write and I am nearly in tears by how amazingly brave and strong person you are! I knew of your condition by talking to you and spending time with you!

I hope your school friends will see "you" as you are a very sweet, honest and loving person.

Sending you lots of gentle hugs.
Linda xxx

Lexie said...

Huge hugs, Lou. It's a massive reminder that there are so many people out there who are suffering, mainly through lack of any form of diagnosis. Too many people have their problems swept under the carpet. I'm glad that at least you know what's wrong now after all the years of wondering. And thank you for telling me what Ehlers-Danlos is. You've said it before but I didn't have a clue.
xxxx

Debbeescds said...

Big Hugs to you Lou.... we never know what is going on behind the blog doors..... thank you for sharing!
I've left you a little something over on my blog if you want to toodle over and take a peak!
xxxxxx

CraftyLoops said...

Oh my goodness Lou, you are a true inspiration. I will admit, I have never heard of this illness so I can just imagine the fight you had on your hands to persuade doctors that it wasnt some form of Hypochondria or attention seeking. I think it is appalling how you were treated by the medical profession. And dont worry about your reunion, if they are true friends they will see you as the same wonderful person you were back then. The stick and the splints are merely the body make-up you have to wear. Big hugs, Lee x

Krafty Hugzz Kenzi x said...

Oh hunny, you made me cry... Not with sympathy but with understanding, My world is generally the same, in 2001 i was diagnosed with septic arthritus, Psoas abcess and manic Depression due to a bad attack where i was left in a car-park and ended up in a coma for 2 weeks, i can only walk with a crutch, have 2 amazing children who are fabulous but miss out on so much, i NEVER go out unless i really have too, i live in constant fear and pain, and last month a disability nurse for the benifits agency told me i could go back to work, oh i am disabled enough to get top rates mobility and care but not disabled enough that i cant work, i am appealing, she constantly lied on my assesment saying i had full mobility, ermm i bloody wish.. My back is that arched i feel 90, children started to pick on my girls because "" i walk funny"", i dont go to their school now, their dad goes, i like yourself just wish people understood and didnt make snide comments, i am lucky enough to have some fab friends and family but wish my life was like it used to be, so i totally feel for you hunny and i am ALWAYS here if you need to talk,
hugz
Kenzie xx

Maria Simms said...

Well Im in tears reading this Lou because it reminds me that you are so much braver than I am-Its just 2 years since they finally diagnosed me and as you know I still dont talk openly about it.
I think of you on my 'dark'days and your determination keeps me going mate!!!
So,I think your school friends should see exactly what you are- A funny,smart,determined lady who has achieved much,and they should feel blessed for knowing you!!!
You keep your chin up and I will do the same, ok? xxxxx

Pearl said...

Dear Lou,
I was really touched by your post! I have a dear friend who suffers from many disabling illnesses but despite that she is always there for me. I suffer from depression and though it doesn't hurt much physically, mentally the pain is unbearable. But compared to my friend and yourself my pain is nothing. Though I don't know you very well, you seem to be a lot like my friend. Brave, caring, encouraging, self sacrificing. So your friends should appreciate you not for what you are physically but for what kind of person you are from the heart. I love my friend and I'm sure your friends will love you too for who you are.
Love Pearl x