Well today, was utter crap. My bones hurt, I rarely resort to bed but I did today. Unfortunately doing this with eds often makes the pain worse. Because when asleep and muscles relaxed they hold the bones in their sockets even less well than they do normally. Of late I have this bizarre experience which means that as I wake, I actually cannot take a breath, I am overwhelmed by severe pain in my back across my ribs that means i cannot move. I am also plagued at the same time by palpitations, these are not from anxiety by the way, as they are the thing that wakes me. It doesn't happen every time, but when it does i know i am in for the long haul. Needing the loo, is a no go, it is taking me up to an hour now to even be able to move at all. Husband has made me put phone by bed on voice activation, as twice in the last week he has had to come home from work, because of this shitty experience. I embarrassingly shout out in pain as he puts his arms under me to gently as possible to lift me up. The sheer pain is so bad, it makes me sweat. How attractive I must be to the poor man. This is my experience before i even start my day and leaves me drained. I have a horror of starting the day with strong medication as I must have a life, but surely I thought the oramorph was for breakthrough pain, not for waking up. I would have to have some sort of pump for the pain to administer whilst asleep, the thought of waking up without this would be a dream indeed. I should go to the doctor but I am a little at a loss to explain the sheer awfulness of this situation, which has gradually been getting worse over the last year or so. I don't care for a diagnosis, I don't actually want to know, I just want it to go away.

I worried when I started this blog that it would become a boring saga of my life living with ehlers danlos, a moan about it all, well do you know I don't care now. i popped in to read ms ordinairres blog via benefitscroungingscums links and realised, I should just vent away. I have to do it somewhere and here will do. What else would I do, ring the gp constantly, have pre-booked appointments three times a week? It would overwhelm him, he can't cure me anyway, I'd just make him depressed. Anyhow I am of the old school that by the time I have got to the doctor, I have managed to talk myself round into thinking that I am just bothering him and there is nothing much wrong. If only he knew. I wish I could paint, or was artistic, as my disability is invisible I look fine, discounting dark circles under eyes from living with pain for so long. This link is good for visual art without words on the many facets of pain http://www.painexhibit.com/ (not sure if it will work as have never put a link in before.

Reading Ms Ordinairre's blog, via bendy girls today, I wished she didn't live so many hours away, I wanted to give her a hug, make her some tea and say I understand implicitly. My children are still my kids but being 18 and 16 I have different practical worries than the sheer responsibility of caring for young children with a chronic condition entails. My wonderful wonderful daughter who lives also with EDS shares her pain with me, she is at uni and I am so proud that she battles on. She is genuinely beautiful, I don't just say that because she is mine (BG would agree she has seen a photo) behind her beauty, she experiences severe pain and yet as she says - in this day and age I thought uni would be the one place that would be disabled friendly, it is so not. But that is for a blog all of its own I think. I don't want to break any confidences as after all this is the Internet and maybe one day she will choose to tell it how it really is. In the meantime, I am there always for her.

I do feel better having vented, and need to go now but a little of me wishes I had more to say than that above. There is more to me than my pain, truly, there is my unbelievably untidy house, there is shared laughter in a family challenged. I have a good brain, I have attended pain management courses, which leaves me able apparently to manage my condition at home. So that is what I do, I fear I am about to enter a new chapter in my life, acceptance that it is time for a stairlift, reliance on others for care needs. Isn't it wonderful to have something to look forward to! Aside from all the moaning here I am actually a very positive person, I put on a smiley face every day and do a great job of pretending all is well. Pretending is good, because if one does it enough, it works, I think thats what CBT is really, an adult form of make believe. So off I go, ready to face the world with a cheery face and thankful to this blog for giving me a place where the mask slips, a little.