Ok. The time has come to discuss that ‘Intervention’ episode. I can’t be bothered to post a link here for it, but if you don’t know what I’m talking about, then just search for ‘EDS Intervention episode’. Then, if you wish, come back here and post your opinion about it.

My opinion? Well, I don’t know if I dare say what I thought about it. At first I wanted to believe that it was the programme makers that showed EDS up, but the more I read in message boards about it, and the lady in question – most posts being from the lady herself, I hasten to add – the more I began to see that it was mostly, if not all, her own doing. And it really gets my gander up, that’s for sure.

At the moment, that is all I am going to say on the matter. I’m hoping that we can have a wee bit of a debate about it..


I am feeling very low. Some of it is exhaustion, I think, and some of it is The Pain, and the rest of it? Well, the rest of it is probably just me.

Anyways, Doctor updates first. I saw the Liver doc last Wednesday – lovely chap, actually had some good knowledge of EDS. He’s not convinced that The Pain is being caused by the liver, so he wants to check the pancreas and the duodenum. I have an endoscopy on Thursday and a CT scan on Friday. I don’t like the fact that I didn’t get any answers as such, but I do very much like the fact that a doctor is listening at last and that things are moving a bit quicker now. He’ll be the one doing the endoscopy and I have another appointment with him for February 8th.

The following day, Thursday, I went to see my GP. I think I’ve already said that he’s quite an affable fella and has two or three other patients who also have EDS, so he isn’t ignorant of it at all, (like so many other GPs are). He is also trained in Accupuncture, which is offered for free at the surgery. (I’ll be getting that regularly, once we find out what The Pain is.) At the top of my list of things to talk about – and it was a physical list, as I’m very forgetful – was the fact that my toes and feet keep ‘switching off’ (they go blue and ice-cold). For once, my body decided to help me out instead of always being against me, and my feet started ‘switching off’ whilst en route to the surgery. By the time I was sat before the GP, the big toe on my right foot looked like that of a corpse. He had a look, felt it and straight away said, “Raynaud’s Phenomenon. Do you know what that is?”, to which I replied that I did, as my mother has it in her hands. He told me it was rarer in the feet and could be a sign of an autoimmune problem, so I asked him if I could now see a Rheumatologist. He scribbled on a bit of paper and said, “Yes, no problem”. Result. I’ve been trying to get an appointment with Rheumatology since I was first diagnosed 10 years ago, but my old GP was always very resistant (due to her ignorance of EDS).

Then he asked me if I wanted the results of the x-ray I’d had done on my back the week before. I’d forgotten to put that on the list! Of course I wanted to know, so he preceded to read out the list of what had been found. Kyphosis, Scoliosis, Lordosis, vertebrae displacement at C7 and Arthritis of the neck. He said that my spine was “twisted every which way it can be, like a corkscrew”. Another brilliant result. Now, I’m aware that sounds odd – why is she pleased about having so many things wrong? – but I have been begging for a back x-ray for years due to the trouble I’ve had with it and my mother was constantly taking me to the GP about the fact that I couldn’t stand up straight. Finally getting one and then having all of your thoughts validated by a doctor, (which seems to be very difficult for EDSers), is a wonderful thing. I just wish I could turn back the clock and have a go at all those people who, over the years, have grabbed me by the chin and pushed my back in, saying, “you need to straighten up girl!”

One surprise though, is that what the GP thought were extra ribs, are in fact rock-hard muscle. He was quite shocked by that, as he was convinced it was bone he had felt.

The only thing that displeased me about the appointment, was the fact that I have given in and taken my first step on the ‘Pain-Relief Ladder’ – the only way is up, baby. Well, I say first step, I have gotten to this point before and asked for pain-killers, only to reject them after a couple of days because I hate feeling so doped-up. I just know that this time there is no going back – not unless the accupuncture works a miracle, that is. It’s just Co-Dydramol at the moment, which doesn’t touch The Pain, (in fact it makes it worse, sharper), nor does it get rid of the joint pain, but does make me feel ‘away’, so I suppose that’s a difference of a sort.

I’m hoping to get a decent amount of sleep tonight, because tomorrow morning I’ve got a couple of friends coming over who I haven’t seen since I became ill. I’m looking forward to seeing them, but I am anxious about it all the same, because I know I look so different now, and not in a good way! I know it won’t bother them, as in they won’t think any less of me, but I know it’s going to shock them and I hate seeing that look in people’s faces. And to be honest, I’m worried about what I’m going to have to talk to them about apart from illness and pain. Hopefully they will have enough gossip to keep the conversation going.

It would be lovely to feel like myself again, or to feel like any kind of human being, to be honest. I’ve resigned myself to the fact that I’m probably going to be on anti-depressants for the rest of my life, however much it still niggles me. It is very difficult to escape depression when you are have chronic, constant pain, however many other blessings surround you.

Pain, pain, go away
I do not want you here today
Nor in my future, if you please
I’ve had enough, I’ll say my piece
My life has changed since you arrived
And became a fixture at my side
Once I could jump and I could run
I did ‘bendy tricks’ for fun
I smiled more, I laughed aloud
Of my house I could be proud
I went for walks, I went to town
The grins they did outweigh the frowns
But now I’m lost, I feel alone
Since you made yourself at home
I wish that I could be set free
Have no more pain and just be me

Another ‘woe is me’ rant, I am afraid.

X-ray had to be rescheduled for Monday, as my youngest was poorly and off school. He’s back to his usual, naughty self now though!

The liver clinic called – appointment is on January 18th (or is it 19th – ugh, brain fog), so not too long to go. Almost called the doctor out last night because The Pain was the worst it has ever been, but then I realised it was Friday night, and there was no way that I wanted to be sent to A&E when it’s going to be full of drunks. Just have to keep gritting my teeth and pushing on through.

So, yesterday I went to see the GP. I don’t mind going there at all, to be honest, and I am quite adverse to medical scenarios usually. It’s a small village surgery – the type that is deemed to be busy if there are two people in the waiting room, one of them being yourself. (I went a few weeks ago, was an hour early for my appointment because hubby had one on the same day, and I got called in immediately! I like that.)

Anyway, the GP was brilliant, although a wee bit stressed as there were four people in the waiting room. (“It’s manic out there today!” he exclaimed.) He has referred me to the liver clinic and said I should have an appointment through soon. He said the pain may very well be caused by my liver cysts (these were picked up on ultrasound scan a few weeks ago) or it could be that my Mitral Valve Prolapse is causing blood to back up into my liver. He said that the latter scenario is unlikely as it should have shown up on the scan, but he wants to make sure. Heart doc appointment should be here soon too. I just hope I can put up with the pain while I’m waiting for the appointments to come through. The GP said to call the surgery or the out-of-hours team if it gets to be too much to bear.

When we’d got all that sorted, I asked him if he could have a feel of my neck, as I’ve been having more gip than usual with it and hubby is always asking me why my head hasn’t fallen off yet, as it seems so wonky. So, the GP had a feel and quickly removed his hands, with a horrified look on his face. He then looked at his model of the neck vertebrae, looked at me, had another feel, looked at his model again and then back at me. He then shook his head and said he was sending me for an x-ray. I should be having it tomorrow, provided I can handle the car journey to the hospital – it’s a very windy road and hilly too, and when The Pain is bad, car journeys are horrible. I’m very interested to see what the results will be, as I’ve been having A LOT of trouble with my neck and shoulders for a LONG time.

Today is the last day I have to hold out for. Tomorrow I can go to see the GP, and I am not leaving until he does something to help me. I can’t take this any more. This is a rubbish way to start the New Year.

I woke up with agony radiating from the abdominal pain (known hereafter as ‘The Pain’) and then popped something in my back as I rolled over to get up. Not an uncommon start to the day now, it’s just that The Pain is getting worse.

I walked into the kitchen door-frame twice this morning. Hurt like hell. I really need to get some weight on, so that I have some padding. Being as clumsy as I am, padding is well needed. Oh yes.

The Pain is quite sharp today, which isn’t the norm for it. It is usually a burning pain, deep under my rib, which makes me catch my breath when I move, but today it is spiky and seems to be even deeper. I like it less than I did before. And it definitely doesn’t like me moving at all. Not one bit. Thank goodness I only have to wait until tomorrow now, even though that seems like a lifetime away.

I am very sorry, but my first post is going to be a rant. I suppose, in a way, that is why I have started a blog about EDS.. to help raise awareness and impart information about EDS.. but also to let off steam about it when the going gets tough! And at the moment, the going is tough indeedy.

For years I’ve tried to ignore my EDS diagnosis – none of the doctors I saw seemed bothered (even though they blamed so many ‘medical happenings’ on it), so why should I be bothered? – and I’ve put up with the idiosyncracies of ‘being me’. I’ve believed the doctors when they have told me that “there isn’t enough known about EDS, I’ve never seen a case before, nothing we can do, just put up with it ..”. (The best/worst one a doctor said to me was, “God didn’t build you right, did he?”. Heart doctor I believe he was. I cried about it at the time, but I laugh about it now.)

Anyway, I can’t ignore this anymore. I’m realising that the EDS has always been a major part of my life, (whether I’ve wanted it to be or not), and that it has touched almost every aspect of my life, if not all, to be honest.

I didn’t begin to look into the EDS purely because I wanted to learn more about it, I was merely trying to find answers as to why I’ve been in so much pain for the past few months. Since October, I’ve had a pain on my right side, just under the bottom ribs, which covers the whole of the side at the front and extends round to the middle of my back. My skin is also itchy all over and I have lost 2 stone in 6 weeks. After telling me to “see how it goes for a couple of weeks”, the GP thought it was gallstones, so he referred me for an ultrasound scan, which I had on December 14, 2011. This showed multiple cysts on my kidneys (lots in left, not as many in right) and lots of cysts in my liver. The GP finally took some blood, which showed that my kidneys and liver were functioning normally, but my white blood cell count was raised. This was on December 23, and the GP sent me away with “come back in the New Year and we’ll have a think” ringing in my ears.

The thing is, I was already at the end of my tether at that point, but I knew that nothing could be done before Christmas, plus I had my children to think about and I didn’t want to ruin their enjoyment in any way. There has been a problem with that though. I have been in so much pain and have been so very tired, I haven’t really seen much of Christmas, or of the children. (They appear to have had a wonderful time though, thanks to their Papa and some Christmas Fairies!)

It’s not just the abdominal pain that is getting to me, it’s the EDS pain too. I haven’t slept properly for months now (that’s when the abdominal pain is worst) and because of that, my body is unable to renew itself properly. It has problems with doing this anyway, due to the collagen being defective , but it can’t really do it at all at the moment. The consequence of this, is that my joints (large and small) are very unstable and are sublaxing (dislocating) more than usual. My neck seems to be very unstable and I have cricked it quite a few times in the past 2 weeks alone. Just by rolling over in bed. (Oh, and one time was because I was doing an impression of someone and moved too quickly. It was my own fault, I suppose, for trying to be funny..) My shoulders are very knotted and my trapped nerves (due to having an extra rib on each side of my neck) seem to be more trapped than usual. The whole of my back, especially near to my spine, is very tender to the touch. My hips are very painful and keep popping in and out of socket, especially the right one. My knees are what can only be described as ‘balls of fire’ and my ankles, feet, wrists and hands are far more ‘clicky’ than usual.

(Blimey, I haven’t written it all down at once like that before. To be honest, I’m not sure that seeing all of that in one place – and bear in mind that the list above is just the muscle/joint stuff – is helpful or not..)

Deep breath time. Just need to move a little. Am seizing up in this here chair.