Well first off I want to say thank you for all of the messages of encouragement and support - it really means a lot.
Something occurred to me last night and a quick poll - with the husband and lovely MFPers - confirmed it.
Not everyone is in pain every day! Well obviously, you may think. But I genuinely only thought of it like that yesterday. We just assume what we are is normal don't we? (doesn't everyone dance round Asda? Oh OK maybe I have a lot to work on!) The last day I can remember having no pain was when I was pregnant so a good 5 and a half years ago. Being pregnant rocked - my body loved it. I was quite scared as I'd a fair bit of hip pain since my teens and figured a big old baby may make it worse. But it was amazing, I had so much less pain being pregnant.
To be honest this is a fairly hard post to write, I am really not looking for sympathy. As I have said I am happy with my lot and I really am pretty lucky. But the whole point of this is to raise awareness of HEDS (Hypermobile Ehlers-Danlos Syndrome) so I guess I need to 'fess up and be pretty honest.
Today walking C to school my toe dislocated and on the way home one on the other foot did the same, it's fine they went in when I got home but unless I told people they had no idea. I think when being in pain is the norm you don't really show it to the outside world.
I have a scale of 1-10 for pain. Pain is pretty objective, what is agony for one person is mild discomfort for another. I think I have a fairly high pain threshold, I did the whole birth thing with no drugs (not choice just ran out of time) and it was fine.
So here are my definitions:
1- A wee niggle, barely noticeable
2 - A wee niggle that is a bit more annoying
3 - Need to stretch a lot to try and move the pain
4 - That achy feeling you get when you have flu and everything hurts
5 - Every joint throbs constantly - you are not really sure where hurts, just everything
6 - A cup of tea is required, along with a hot water bottle, feel a bit sick with the pain
7 - Jings that really hurt, it is a struggle to move and to sit still
8 - Strong painkillers required to function
9 - Uncontrollable screaming in agony
10 - Passed out!!!
I hover between 3 and 6 most days, a 3 is a really good day, I can conquer the world on a 3 day! There are then spikes of pain if things pop out. I can usually judge how a day will go on if I can squeeze the shower gel out with one hand or if it has to be a more complex two handed manoeuvre!
Now as I've said it was only yesterday it registered that this is not normal. It's fine and I manage it without too much moaning although the husband may disagree on that. But it just sometimes makes things a bit of an extra effort. To get up and dance with C when I've just found a comfy spot. But there is no way I will not join in just because something is a wee bit sore. Even if it means collapsing with a hot water bottle once she has gone to bed.
Exercise is essential to me, I know that, but it still takes that little extra push to get off the sofa, ignore the creaks and clicks and just do it!
So again thank you for your support it really does help.