Good evening blog,

Today's label will be beds... It has been a bed day, by that I mean I have supervised removal of one bed to be replaced by another bed. This involved, the most amazing and ridiculous amount of laughter as at the back of a drawer in the bed, was found a box with old books from school compiled by no 1 daughter. Now some people would know exactly what was in the drawers under the bed but not me, one would think that being bendy would mean I found it easy to get to things in a drawer put in what is really a stupid place for a drawer to be, but crawling around the floor for me is no easy task as it involves, knee subluxations, ankle subluxations, and the rest which probably BG could describe better than I. Having got onto the floor I need another person to get back up and not an unhelpful one who puts out a kindly hand for me to yank myself up with as that would involve crushing my at present very very bendy hands and that pully thing in my elbow which I hate to admit is actually quite a pleasant sensation, followed by the extreme pain of a shoulder dislocation. So this is why I do not know what was lurking in the drawer under the bed until OT pulled out the drawer and tipped it onto the bed. The box at the back, delayed the bed moving process for ages....

why I wonder is reading what young children have written when they are grown so very very funny, my guess is they have to be your own children, godchildren or children whom one is very fond of to be so utterly endearing. Eldest who is now 18, could actually remember writing some of the stuff. Which for an entire term involved entering the name of a little blond haired boy, who by the way has turned into a far too good looking for his own good type of young man into every story regardless of its theme. So in the middle of a story of fairies in a wood with magical happenings, suddenly (we'll call him James Bond to save blushes) the words and I said to James Bond who happened to be there..... and a story of horseriding on a beach in Spain, along would come James Bond, followed by the same words... who happened to be there... and most hilariously a story of what it would be like to live in Victorian Britain as a servant in a large house... and I turned to James Bond, who happened to be in the kitchen as he was a gardener and bringing in the vegetables for Jam making today and said.. thank you James... At the end of the term a teacher had written the comment when marking... A very good story indeed B..........
however I think it is time you and James... who just happens to be there, could have been invited, or suddenly appeared, etc. as I am bored of James just happening to be there! The memories of her innocent crush on James Bond brought back other filed and dusty in the brain childhood family memories..... along the lines of .. oooh do you remember when stuff, irrelevant to the outside world but oh so cherished. A lovely lovely afternoon So blog, thank you for just happening to be here.

Back to the beds removals, its done and number one son announces that he misses his old bed, which has gone to bed heaven at the local dump and could he have it back. A resounding no all round. I wish there was a bed fairy who did it all when you were out, actually I wish there was a fairy for just about everything blog. You know the one, that wisks up a yummy batch of muffins with just the right amount of chocolate chips in and who actually does just about everything magically. This fairy could be called wonderfairy. Do you believe in fairies?

Hello Blog,
Large writing today - a list... need an eye test. Need to do a lot of things. That will do.

I have decided to talk directly to my blog now as reading back through a few posts, I think we know each other reasonably well now. Well enough I suppose to know that the blog and I get on extremely well. I talk and blog listens. Doesn't have any suggestions but I would like to commend Blog on his listening skills. Now, obviously this blog is a he, not entirely sure why that is.

I should explain blog, that today I had a think about what it is in a human being that makes some suffer with depression and others not. I am of the cup is half full variety and am a Leo which makes me vocalise my inner thoughts, this means that if I am unhappy I say so, my life is good really so the more mundane things make me pissed off. Such as chronically untidy and in need of decoration house. So I will announce that I am not prepared to live like this to poor husband who works so hard without complaint, that it is time something was done. So we have a plan, at Easter apparently we are to have new carpets everywhere upstairs, this also means that the whole of upstairs needs decorating. Is this an achievable task, I think not but now that I have voiced my upset I feel ok about it.

On meeting nameless friend I shall refer to as Polly, I find she has been labelled by a psychiatrist as having multiple personalities, this cannot be right. She sees this professional because she has had terrible things happen to her in her life, which anybody would struggle to cope with none of which are in any way her fault. On explaining toher psychiatrist, that no one at work knows of her depression, or in her hobby area no one knows there, he has come up with the idea that she has multiple personalities. Now I know I have no qualifications but this is a label too far, she does not think as Jane today, Julie tomorrow etc. she just tries to do the best she can. Would it make a difference if she told her work colleagues that actually, her abused past means that she often feels suicidal etc. I think not. She attended CBT as a child and very much tries to be positive and sees being a happy positive person at work etc as helpful in coping with her depression. Now however, she informs me that her psych think she has multiple personality disorder as well as depression. I could just slap the bloke with a wet kipper frankly, I spent the afternoon talking this through with her and we have decided that at her next appointment she will discuss this 'diagnosis' further and if he agrees this will be removed from her notes. I just wonder if he understands that he has added to her troubles. So I shall see her again in a couple of days to see how she is getting on and in the meantime Blog, am thinking of Polly, oh yes Polly not Julie or Jane or Hamish, So this post is labelled today - labels. My label would be disabled I suppose but am rather inclined today Blog to throw away the labelling and describe myself as a human being just like any other.

Sleep well blog, thank you for listening.

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.

Just wrote loads and lost the lot! Due entirely to internet connection being crap at the moment, does the cold weather affect it I wonder, or is it that with the cold everyone is on line. I guess the shopaholics that can't get out must be, I expect those that are hoping for a day off on Monday may be, the weather freaks will definately be, others like me are writing crap on their blogs that no-one reads but them.

So a synopsis of what I had written would be, glad bendy girl is back on line as only post here when I go there to read hers.

Holidays, want one!

Knitting - ha ha, update, I am rubbish at it, my hands are killing me and my monster is finished but is truly monsterous.

I am taking so much pain relief at the moment its affecting my appetite... they should put vitamins in the lot, then i wouldn't have to bother chewing food... subluxing jaw with eds combined with choking would make life easier.

Perhaps people with eds should be astronauts, a weightless existence living on slurped packet food sounds good. i wonder if stretchy collagen is more so in space?

I continue my own form of CBT, positive thoughts replacing negative. So instead of saying here, I am completely fed up of living with a condition that is little known and causes terrible pain, I shall say instead, how lucky I am that I don't have a well known condition that is familiar to everyone otherwise they would say all the time, oh poor you living with MS or such... and as far as pain goes, at least I am alive, I know I am cos it hurts.

So thats it my synopsis, I also mentioned in lost post thoughts on dragonspeak and a long boring bit on horlicks......

I am off now.. to dream