Sunday, 19 September 2010

A Variable Fifth

What do you know about me? Really know? Anything? Much? Little?

I’m a mother, a wife, a businesswoman who owns a children’s nursery, a wannabe writer and an ex-cop. In a nutshell. 

I’m plenty of more things too. I recently had a discussion at my nursery when we were holding interviews. One of the questions we were asking - describe yourself in five words.  We had fun, the staff and I, thinking about all the things we could say. I also posed the question on twitter. My favourite response was from Oscar Windsor – A man of his words – it says a lot about him as a man and also as a writer. I like it. I may even use it myself. Substituting man for woman, of course. 

I thought of five words I would say about me and guess they would fluctuate on any given day. Some are constants though. Everyone I ask came up with the first four, just as I did.  

Integrity –  because yes, I have a lot of that

Committed – maybe I should be!

Passionate –  I throw myself into everything with gusto and a belief 

Sensitive – I cry with the best and the worst of them and take things far too much to heart

 A variable fifth -  funny/sad/loud/large/humorous/chatty/reserved etc

One of the things about me that I haven’t mentioned so far is a person with Ehlers-Danlos Syndrome. What exactly does that mean? What do you know about it? What do you know about me, with it?
All three of my children have it. My sister has it. My brother has it. His two daughters have it. It’s a genetic condition which means that either my mother or father passed it down to us. It can be caused by an individual quirk of chromosomes/ genes but for all three siblings to have it, it had to have been carried down the line.
My mother is dead but never showed any signs. My father refuses to acknowledge it. Despite the fact that many of our paternal relatives, living and deceased have signs and symptoms, I have given up trying to inform them. It’s up to them. I can’t diagnose people. I can’t make people believe what they don’t wish to. I can’t live their life for them. 

The thing about EDS is that it’s one of those invisible conditions that doesn’t always show. Yes, you know when I’m wearing a splint, using my crutches, wrapped up in bandages, but I wear a smile that masks the pain. Sometimes.  I’ve spent some time with the nurse from the pain clinic. It was a bad day for me, pain-wise. I don’t show you this. I might moan from time to time, I might even complain but generally, you don’t want to hear it. Who would? Sometimes the pain is evident on my face. If you know me well, I might let off steam to you.  With others, I don’t. 

I’m sorry if you’ve heard me moan. I’m sorry if you’re sick of it. I know it sounds like there’s always something wrong – in reality, there is. If you’ve been hearing about it, it’s because it was either a bad time or you were someone I could say these things to. It’s something I have to learn to manage. All I ask of anybody/everybody – look at me and don’t judge. Isn’t that what we all want? I am many things. And just like us all, I’m made up of the sum of my many parts. 

Remember, if you’re feeling a bit rough one day, a bit fluey, a bit under the weather, that’s normal for me. Every day. And it fluctuates in severity and where it strikes. Oh – and that foot dislocation? That knee displacement? That snapped hamstring? That large intestine that’s three times the length it should be? That dislocating jaw that juts out as it’s been put together wrong? That tia/mini-stroke? All those things and many more that I complain about? They are all common in EDS. 

But the biggest thing to remember – I don’t have this because I’m in my 40’s. I don’t have this because I’m overweight. If I was eight stone or eighteen stone, I’d still have it and it would be the same – a variable condition that causes a lot of pain and fatigue and stress and symptoms. I don’t have EDS for any other reason but that it is something I was born with and the older I become, the worse it might get. It’s in the genes.

It could all be a lot worse. I think, my family and I, we are the lucky ones. There are many more worse off than us. So please forgive me if I have the occasional weep.  Don’t feel sorry for me, don’t tell me to pull myself together and please don’t give me sympathy. Just help me to pick myself up, smile and dance with me, if not physically, then emotionally. 

This is my life. That’s all.


  1. My father should read this ...

  2. Dancing is good for the soul :)

  3. Rodhette - please show him. My father said he doesn't have time for blogs. Oh well.

    Jan - thank you : )

    Leather - I love to dance! Thanks ;-)

    And for all those who have commented elsewhere - thanks for reading and letting me know. I appreciate it.

  4. Thanks for the kind mention, Effie, and for the frank insight. Keep on keeping on, eh? Take care, babe. Love ya. @OscarWindsor xx

  5. I don't quite have the right to say I know how you feel, but as you know, I have done some hell of a research package on this disorder, so have some understanding of how the invisible things, that people wouldn't see, can affect you. You know you have my ear if you ever need it and you have my respect as the person you are. Be gentle with you

  6. Thank you Oscar. Love ya too xx

    Jane - there with you - don#'t stop believing. xx