Standing, walking. Wish I could!

Just been out for lunch with an old friend at a local garden centre, and although I was walking with a stick and mentioned that I have just had a mobility scooter because I cannot walk far or stand for long we still had to walk around the pet section where she looked for ages at the many things you can buy for hamsters nowadays because she has decided to buy a hamster for her daughter as a surprise for Christmas but has not yet bought the actual hamster! She bought things for it to chew on, a ball for it to run around in etc., so hopefully she will definately buy the hamster before Christmas now! I was already struggling just walking around the small pet section and standing for too long while she cogitated on which chewy thing to buy then on the way to the till to pay she decided she needed to use the toilet and left me standing next to her basket of hamster related goods while she skipped off to take advantage of the facilities which was not the best idea for me as just standing really hurts. So there was I, swaying from one side to the other wishing she would hurry up! Its true what they say, ehlers danlos mobility syndrome is invisible, even though I use a stick and walk relatively slowly it seems to go unnoticed, and I don`t like to make a fuss and say I am struggling so I suppose its my own fault as I suffer in silence. Its not even as though we were walking around for very long, but just a few minutes is often enough for me, it certainly was today, and the arthritis in my spine was causing, and is still causing, lots of pain. Its good in one way that people treat me as they would anybody else, but on the other hand when I am struggling it would be nice if, just for once, somebody noticed!

Pain in the side.

I don`t know if it has anything to do with my hypermobility, and ehlers danlos, but since about 3.30 yesterday afternoon I have been in agony!
I started having twinges in my left side, round about the area which would coincide with the bottom of my rib cage. The twinges got more and more frequent, and more and more painful, during the evening and by mid evening I was in agony with sharp stabbing pains every few seconds which made me wince and jump. The area was also very sore and tender to the touch and I could not even bare to have the material of my clothing next to the area so painful was it. The whole of my left side, from breast down to hip, radiating slightly round to the front and back was very very tender, though nothing was showing on my skin, no redness, no rash, no apparent swelling, yet I only needed to touch it and I jumped with pain. I tried to concentrate on the television, though I could not get myself comfortable, and by ten o`clock the tears were streaming down my face even though I attempted to stop them, the pain was just so fierce I could not bare it! When my husband realised how much I was suffering he brought me painkillers and a wheat bag, hoping the heat would help. I was wary about putting the wheat bag near to the tender area and I very carefully placed it as close as I was able, it took about an hour and thankfully the pains began to subside a little, soothed by the heat, or by the pain killing medication, perhaps both I don`t know, I was just glad the pain was a bit better! Eventually I decided I had to try and go to bed, reluctantly as I could not see how I would be able to sleep if the level of pain kept the same and I had to ask my husband to warm up the wheat bag once again. I laid it on the mattress and flattened it out, then carefully lowered myself gingerly on top of it. It took a while but eventually I managed to get a little more comfortable and I did drop off to sleep, though waking a few times in the night with the stabbing pains. I woke early this morning because of the pain and carefully got dressed and I have thought it best to rest today as moving around seems to aggravate it.
I have no idea of the cause but wonder if it has anything to do with my hypermobility and ehlers danlos, as I can move in a certain way and my ribs seem to dig in and hurt me. I have had something similar to this before, but not to this extent, not so long lasting and painful. Hopefully it will right itself, I don`t fancy yet another trip to the doctor!

Is it great being hypermobile? No really.

Over the years I have had problems with so many of my joints, I score top marks on the Beighton Scale, it seems that most of my joints are loose.
My ankle is so painful at the moment, it came on yesterday suddenly for no reason whatsoever, one minute it was okay, the next I could hardly put my weight on my left foot. The ankle has been clicking for some time, and I have had many times when pain has started in the ankle for no reason over the course of many years, but this time the pain radiates up the lower calf and I get a shooting pain when I put weight on it. I have put my magnetic support on which normally works in a few days so I am hoping it will take the pain away, though as yet it has done no good at all. I am barely able to hobble and am slightly worried that this pain is not the same as I usually get. I have noticed that in the last few months the pain, when it comes, lasts for longer. At one time I could put the strapping on and it would subside within 3 or 4 days, but it has been playing up a little for a fortnight now and keeps getting worse each time it returns. My GP said he cannot give me any different anti inflammatories or pain killers so he seems to have given up and I don`t quite know what to do, or where to go for help. I do find that if I have pains in one or two joints it makes me walk slightly differently to compensate for the pain site and then I subsequently get pain in a different place because I am moving my body in a slightly different way or position.
I used to think it was great being hypermobile when I was younger and my party piece was to do the splits, high kick or wrap my legs around my neck. I now hate being hypermobile as I would not be in the physical pain I am suffering now if I weren`t.

Sleeping, or not.

I have not been sleeping well lately, things on my mind but also I have not been able to get myself comfortable. Lie on one side, hip displaces slightly, pain. Turn over, shoulders ache then hip begins to hurt. I can`t win. I lie in the dark trying to still my mind, make my mind blank but then I have to turn over because my knee hurts and my back has gone into spasm. He snores loudly beside me and I despair of getting any sleep. I hear his alarm go off at 6am and groan, I can`t remember being asleep yet and it is almost time to get up.

Pain.

I asked my doctor yesterday if I could be refered to a rheumatologist. He told me it would not be of any benefit, they would only give me the same anti inflammatories and pain killers I already have on repeat prescription from him,and would not be able to offer me anything else. I asked about steroid injections and he looked horrified, telling me they have lots of side effects and I have enough problems as it is, without anything else! He said steroid injections are more for rheumatoid arthritis than the osteoarthritis I have. He showed me his own hands and told me he has osteoarthritis himself for which he does not take anything as he does not want the side effects! Thats all very well if you just have the pain in the hands I thought, but when you have back pain, both lower and upper, knee pain, your shoulder hurts and your ankle is painful and clicks aswell as the joints of the knuckles and fingers you need a bit of help! I find standing in one spot for more than a few minutes agonising and my hips and back scream with pain when walking, so much so that I need a mobility scooter. I would love to avoid taking medication, and I tried for a long time to do without, but I have reached the stage where the pain is too much and I cannot function without pain relief. I am 57 now, so maybe a rheumatologist would not have a lot to offer, but I think perhaps my GP has not taken my hypermobility into account, maybe he has I don`t know. To be told there is nothing else he can do is difficult to come to terms with, and to know I have to live with this pain, as even taking the medication I still have pain, though perhaps the edge is taken off, is very hard to bear.

EDS IS A PAIN, LITERALLY.

My right hip is absolute agony right now, so much so that I don`t know where to put myself. Everytime I move, even if it is a small movement, it is much much worse and walking, well walking at the moment is almost impossible. The pain killers have not done a thing, though I took a couple two hours ago, I have had my anti inflammatories and I am now wondering what to do as nothing is helping. I don`t even know what I have done to it, but then again my hip can sublax just by my turning over in bed, so really I don`t need to do a lot! Hopefully with some rest it will right itself, I know I can`t put up with it like this for much longer.

IBS and EDS

It has come to light that IBS seems to be connected to EDS, having had stomach problems for a long time now I can well attest to that view. Food intolerance and stress contributing to the problems in my opinion. It is restrictive and debilitating and on many occasions I have been forced to cancel a social visit because of the problems caused. Pain caused by IBS can be terrible, and other side effects which I will leave to your imagination! Sometimes the only way to get over a flare up of IBS is to stop eating, and I am often just on water for a couple of days in the hope that it will sort things out. It gets me down and can often last for days, not an easy thing to cope with.

BURSITIS

For a few days I had bursitis behind my knee, very painful, but with rest it has eased a lot. I have had it before, all part of the ehlers danlos hypermobility experience I think, never a dull moment! I was visiting my cousins at the weekend, and we were all pulling our thumbs down to the wrist, one point for each wrist on the beighton scale. Then my cousin Susan said she could wrap her legs around her neck when she was younger, and we began to compare notes,  as I used to be able to do that too. They could remember me doing the splits, though when I was invited to perform this particular trick I declined because at the age of 56 that is now beyond me! Clive asked how I knew I could do these things, and why on earth did I try them in the first place?! Frankly I don`t have an answer to that, I suppose just because I could! I have always been a fidget and can never keep still, but perhaps it was a bit extreme to wrap my legs around my shoulders! Maybe it was in gym class at school, I honestly can`t remember. I know I discovered I could do splits in gym class at the age of 5, I certainly did not know I had the ability before then! I do now wish that I had not gone to such extremes, though how much it would have helped, and whether my joints would still be in the same state they are nowadays is anybodies guess. I often see people in their 70`s and 80`s walking briskly past me, when I am struggling to walk and leaning heavily on my stick, and think to myself why is life so unfair? Not that I wish any harm to those people, I just wish I could walk as quickly and without pain.

Hurt hurt hurt hurt hurt

When I woke yesterday morning my neck, shoulder and the upper part of my left arm felt very painful. Whether I had slept in a strange position or whether it would have happened anyway with my loose joints, and having had pain in the shoulder for some time, I don`t know, but despite taking pain killers throughout the day the pain did not really ever subside totally.

Today I woke with the same pain in my neck, shoulder and upper part of my left arm. I have taken pain killers and am currently sitting with my arm resting on a cushion to take the weight of the arm and I am now waiting for the 4 hours to be over so that I can take some more pain killers so once again they may have taken the edge off the pain, but it has not gone by any means. Maybe some heat would help, or I could try my tens machine again, but at the moment I am feeling rather sorry for myself as I sit here trying to keep occupied so as to forget the pain for a while. Not easy.

I used to think it was cool that I had been born with hypermobile joints, after all I was the one at school who could do the splits, I was the one who could high kick above my head, I was the one who could wrap my legs around my neck and walk on my hands, tied up in knots. I was the one who used to make people pull a face and hide their eyes when I pulled my thumb down to my wrist or turned my arms backwards so that my hand faced in the wrong direction. I am now the one who wishes I could never have done any of those things. I am the one in pain.

THE GREAT WARDROBE CLEAR OUT.

It has taken me 4 days to finish sorting out my wardrobe and drawers. Not because I have lots and lots of clothes but due to the fact that I find it difficult and painful to do repetitive movements or to sit on uncomfortable chairs or a seat without a backrest. Standing for any length of time is also out of the question, hence the reason why it has taken such a long time to sort out my belongings! I am very pleased to have got rid of 4 bin bags of old clothes and bits and pieces and now I have tidy drawers and a wardrobe that I can actually find things in! Having to pace myself when I do anything is a pain, but the sense of achievement when I finish is great. I am rather a hoarder, and a perpetual dieter, so my weight rises and falls all the time, and I have differing sizes in things! There were, however, some things in my wardrobe that I have literally had for years, and I kept them thinking and hoping that one day I would get into them again! Never going to happen, I differ a stone or two, but I doubt I would get into clothes so much smaller, though one can hope, and besides by the time I lost enough weight they would be completely out of fashion!! So I have been ruthless for onces, and discarded anything I have not worn in a year and am unlikely to wear ever again realistically! Although I did this clear out over 4 days it has still taken its toll and I am still in some pain, but I comfort myself by saying perhaps not in as much pain as I could be if I had not taken my time and paced my activity. Its the only way to cope, I have realised, when you have ehlers danlos hypermobility syndrome.

OUCH

I decided to sort out my wardrobe this morning, it had rather a lot of things in I either don`t wear now, or cannot get into any longer, and I can`t find anything. I am quite a hoarder so I decided to be ruthless and get rid of stuff I have not worn for a year or so and have no intention realistically of wearing again. The problem is that now I have a large pile of discarded unwanted clothes on my bedroom floor and have done too much so I can`t find the energy, or the pain free movement, to be able to fold them and put them into bags. I did take one bag up and then realised it would not all fit into that one bag, but by the time I had walked downstairs to fetch it, and then slowly and painfully climbed the stairs again, I was incapable of putting much into it. I tried valiently to pop a few bits and pieces into the bag, folding them as I did in preparation to take them to a charity shop, but the pain did get the better of me in the end and I was forced to give up and leave them where they lie for now. I have to pace myself in what I do and this morning I am afraid I was too enthusiastic in my endeavours and over did it, which was my own fault. I feel better now though that my wardrobe holds fewer clothes, clothes that I can fit into and which I wear all the time, it is an achievement for me to get it sorted and it is frustrating that I am now unable to quite finish the job I started, due to my EDS hypermobility, arthritis and pain.

STILL HAVE TO LIVE WITH IT.

Next month I shall be 57 years old.
At the age of 5 I realised I was double jointed, as it was known back then, when I did the perfect splits in a gym class and my teacher had a look of astonishment on her face!
"Did you know you could do that Christine?" she asked in amazement.
I shook my head, suddenly shy of this attention, I had no idea I could do the splits, I was the only one in the class who could manage the move.
By the age of 10 I often went to school with my legs bandaged tightly from ankle to thigh. My knees would swell up and be very painful, Mom would take me to the doctors who would pronounce "housemaids knee". He would advise my Mom to put on a tight bandage, all the way up the leg, to take down the swelling! As you can imagine it was very difficult to walk, I could barely bend my leg. As you can imagine the other kids laughed at me, kids can be cruel. Nobody bothered to ask me why I was swathed in bandages, nobody realised I was in such pain. The doctor never thought to refer me to hospital to a specialist, to find out what was happening to me.
The swelling would eventually subside (after all, it had nowhere to go) until the next time.
I overused my joints as a child, well I did not know that later on in life I would have regrets, and so I would do my party piece, wrap my legs around my neck, splits, high kicks, I could even put my legs over my shoulders and walk on my hands! I could not only touch my toes with my legs straight, I could bend right over and put my hands flat on the floor, then a bit further until my forehead was on the floor, knees still straight!! Well actually I know now that my knees were not straight, they were bending the other way!
My knees would swell regularly and I would be back in the bandages, I would fall over when my hip gave way suddenly, without warning. Even then no adult tried to find out a reason why. 
By my twenties I had lost 3 babies, the doctors said it was my hormones but I now wonder if it was due to my hypermobility. To hold on to the two babies I managed to give birth to, thank God, I had to rest all through my pregnancies and was given hormone injections, one a week for the whole 9 months.
Giving birth to my first baby, my wonderful son, I had an epidural, not at my request but because my blood pressure was very high. I kept telling them I could still feel the pain, though not quite so bad. They did not believe me. I know now that with EDS hypermobilty it does not always work.
Towards the end of my twenties I started to get stuck when I bent over, I would bend to reach something from a low kitchen cupboard and get stuck, often having to ask my now 7 year old son to help me straighten. I laughed it off, not wanting to frighten my children, `silly mum got stuck, oh dear!`
In my thirties I heard the word hypermobile for the first time, and learnt it was the same as double jointed. My doctor said I had hypermobilty syndrome and that my overused joints would be prone to arthritis. (No kidding!) Already my knees were gone, I was told I would have to have replacement knees eventually, but as I have since discovered, would the operation work properly?
In my mid thirties I had a fall, black ice on the pavement just along from my house, I went down heavily on the base of my spine. I struggled to get up, the pain incredible. I managed, I don`t know how, to get back to my house. I called work "sorry I can`t come, I fell and hurt myself." Little did I know I had ruptured two discs in my spine, oh the pain.
I have never been the same since.
Gradually, over the past few years, everything has got so much worse. My back is painful all the time, degenerative disc disease I am told, my hips have now joined the party, becoming so painful when I walk that I could cry. My knees are gone, crumbling, creaking and groaning, swollen and misshapen. Other joints are starting to give me trouble now, my hands hurt, my ankles give way, my shoulder gives me pain when I move it in certain positions. Even my jaw can get stuck when I yawn so I must be careful!
I have problems with bowel and bladder, told I had IBS many years ago, this now seems to me yet another problem caused by EDS hypermobility syndrome, or perhaps both? I daresay lots of other things can be attributed to it too, more research needs to be done.
At the age of 49 I was diagnosed with breast cancer. Nothing to do with my hypermobility but even this has consequences. I had chemotherapy, radiotherapy and herceptin. I took tamoxifen for 5 years but now my hormone drug has been changed, to one which can make arthritis pain worse. Boy has it made it worse! I feel that I have to take it though, I was told it is to give me a better chance, after all I certainly don`t want a return of cancer, that thought terrifies me, and so I take the drug, and cannot walk far whether just as a result of the side effects or because of my worsening arthritis I don`t know. Maybe both.
Hypermobilty syndrome has now been reclassified as EDS hypermobilty, which used to be EDS 3. Not that a big name helps at all, those of us inflicted still have to live with it! The invisible illness as not all sufferers use a wheelchair all the time, nor walk with an aid, yet they are in pain, but it does not always show.

Don`t take up a disabled parking bay if you do not need to use one.

There was this clicking sound every time I turned over in bed - my hips! They do tend to sublax at will, and can prove very painful as you can imagine, who would think you can hurt yourself in bed?!!

We popped into town this morning as I wanted a pouch in which to keep my new phone so that it won`t get scratched. We parked in the disabled spots as the place we wanted to visit was not far away as my walking is not very good now. When we got back to the car a traffic warden was taking photographs of the car next to us and writing a ticket out. It obviously did not have a disabled badge displayed and so they got a ticket, and serve them right. People do tend to park in the disabled bays without a badge on a Sunday, perhaps thinking the wardens will not be around. It is not always permanent wheelchair users who need to park in disabled bays, those with limited mobility, who would be unable to visit the nearby shops if they had to park further away also use the disabled bays and with good reason. If you could only walk a very short distance before finding the pain too much for you, you would want to park as close as possible too!

Like doing a marathon.

Writing in blue, because I feel blue.

Yesterday we went out to get a few bits and pieces, we went into Asda and bought a toy for Poppy, it wasn`t the big Asda, it was a small Asda home store and we only went upstairs on the escalators, took the toy off the shelf, paid for it and went back downstairs in the lift as for some strange reason the escalator in this particular shop only go up, you then have to walk down a long flight of steps! We then went into the pound shop next door to get a new drawing book for Poppy so we just went straight to the section with the drawing equipment and then to the till to pay. By this time I was starting to flag and walking was becoming even more difficult and painful. I was unable to get one other item that I wanted in this shop so we decided to give a home bargain shop, just a couple of shops along, a try to see if they had what we wanted. As soon as we reached the shop I realised I had made a mistake, it was already too much for me, just the short walk along the parade of shops, not very far but obviously too far for me. We went into the shop but we had only got half way down the first aisle when I realised I could not go much further, the pain was bad, very bad. I said I was struggling and so we made our way to the exit, me walking very slowly by now, trailing behind and leaning heavily on my stick. The walk back to the car, no more than about 10 or 20 yards, was slow and painful. I kept having to stop and rest, leaning against a convenient pillar on the shopping parade. By the time I got to the car I could have cried, the pain was excrutiating, my back was screaming out in agony, both hips were so painful. I eased myself carefully into the seat and the relief I felt on reaching the car was immense. It was like doing a marathon, except I was only walking a very very short distance. Today my legs have felt so heavy and I have been in a lot of pain with my back, it is so wearing to be in pain all the time, even though I do my best to keep a cheerful face showing to other people sometimes I just can`t manage it, and I am best at home, resting in the hope that the pain will abated a little. Ehlers danlos hypermobility syndrome, grrrrrrrrrrrr.

HOPE ITS JUST ARTHRITIS.

The appointment has arrived for my bone scan on Wednesday. I have to be at the hospital for 9am and by the looks of things I shall be there for several hours. The letter came with a booklet explaining all about the scan, apparently it is a very expensive procedure and the radioactive material they will inject me with is expensive so I have to ring if I am unable to go as soon as possible. I must admit I feel like ringing and cancelling the whole thing, I am feeling extremely nervous about it. I am fine with injections, when I had breast cancer and the subsequent chemotherapy I had numerous injections over the couple of years I had my treatments, but I am claustrophobic and the thought of being in the enclosed space is freaking me out a bit. Some people have asked if it is like a CT scan or an MRI, well I am not sure to be honest, it does sound similar, except that the leaflet says it will take almost an hour, and when hubby had an MRI it was about 20 minutes, and he did not have to be injected with radioactive material! My brother in law kindly told me the other week that it was the most painful injection he has ever had! Thanks Rich! It is a well known fact that women can bear pain a lot more than men (at least thats what the nurses and doctor said on 24 hours in A and E on tv the other night) so I am hoping its true!! After all we have to bear childbirth don`t we girls? Enough said.

I am a bit worried about the results of this scan, the consultant who ordered it for me is the surgeon I see about my breast cancer, and when I said my arthritis pain was much worse he said we had better get this looked at. I keep telling myself it is my arthritis that is causing the pain, but a tiny corner of my mind keeps saying to me "it could be worse than that". God I hope not. Hope its just arthritis.

Bone scan.

Full body bone scan.

On Friday I had my annual visit to my surgeon, I see him every year for 10 years following my diagnosis of breast cancer. He came into the room and asked how I was and I said I was fine apart from the fact that my arthritis was quite bad. Oh how I wish I had kept my mouth shut, he asked me where the pain is, has it become very bad, do I have pain elsewhere? The pain in my lower back is with me all the time, I also have it in my knees, ankles sometimes, shoulder, hips and at times in my upper back. He popped out of the room then appeared a few minutes later, he thinks I should have a full body bone scan, just in case, was that okay? Can`t say I fancy the idea, but then he is the specialist so I should trust his judgement, he knows what he is talking about. You should also have an xray of the lower back, we can arrange for you to have the xray today, and you will receive a letter to go back for the bone scan soon he said. So off I went to have a back xray which thankfully did not take too long, the bone scan will take a lot longer. I have heard what happens and don`t really fancy it, but needs must. The doctor freaked me out a little when he said if there is anything to discuss you will receive a letter to come back and see me to talk about it. Hopefully it is just my arthritis that is troubling me, I cannot think of the possibility that it could be anything more, so I won`t. Comes to something when you want to hear the news that your spine is crumbling!

The invisible and the pain.

Ehlers danlos and hypermobility syndrome. What a mouthful! I suppose it needs a really long name because it covers a multitude of symptoms! The collagen, which is at fault ofcourse, is not only in skin, in joints, but in every part of the body, and so it affects all kinds of things. The thing is, it is largely invisible, and so if you do not walk with a stick, sit in a wheelchair, or wear splints or supports, others do not realise what problems you have. If you think about it when a joint over extends, or bends in a way it is not meant to, it will become worn and pain is bound to result. If the organs of the body are affected, which they frequently are, you can have all kinds of problems with your heart, stomach, bowels, bladder. After all if the walls of, say the bladder, are stretched you can well imagine the trouble it could cause, lets just say Tena lady and leave it at that. I have had physical problems since childhood, especially with my joints, my knees would swell up and be painful but my doctor would diagnose fluid on the knee. I would go to school with a leg bandaged from ankle to thigh! My joints have always sublaxed, or partly dislocated to those who are unaware, and I would find my hip would give way whilst walking home from school, making me fall to the floor. The lollipop lady often picked me up when I suddenly collapsed in front of her, and sat me on the concrete bollard at the roadside until I got myself together. She presumed I tripped I expect, but I did not, my leg would just give way underneath me, and would not support me. There was nothing I could do to stop it happening. I would tell my mom, but she just thought I was clumsy and kept tripping over my own feet! The number of times my knee or ankle has given way, quite a few times I have plunged down the stairs, unable to save myself or stop it happening. These days I have a rail either side, which I cling on to as I walk downstairs carefully. My hip is often very painful, especially if it has sublaxed just because I turned over in bed! I walk with a stick now, my ankles and knees often "go" and so it is easier and safer, I don`t want to fall. My spine is unstable, and painful all the time, not helped by a fall I had some years ago when I slipped on black ice. Now I have trouble with such a lot of joints, I can only raise my left arm some of the way above my head as the shoulder is hurting these days. My fingers ache and I can no longer sew as I used to do. It is easier to type than to write for too long holding a small pen. I can not stand in the kitchen making the elaborate cakes I once did, standing causes my back pain to go into overdrive and my fingers are unable to squeeze a piping bag to ice the cakes. My mobility is severely restricted, walking causes such pain it is easier not to do it. My life is a world of pain that I try to hide from others, I do not want those I love and who love me to know my suffering.

We need help.

Its about time the health professionals got to grips with ehlers danlos syndrome. After all it was discovered in 1963 so by now, surely, it should not be such a mystery to the medical people who should know all about it. Its a complex subject I know, and there are many different types, but if you have it, its no joke, and it would be nice to be able to discuss options such as exercise and pain relief without the medical doctor looking at you as though they do not believe what you are saying. It is very isolating, personally I have suffered in various different ways for many years, and now my arthritis in lots of my joints is a real bugbear for me, it is very debilitating and I often feel trapped within the confines of my own body. As it does not show, like a broken arm or leg, people are unaware of the problems faced by those with this illness but they are very real, and very painful. Ehlers danlos syndrome is a problem with collegan in the body and joints wear too quickly as they are overused, it can affect internal organs, eyes, ears, heart, you name it. Please medical fraternity, do some research, we need help!

A pain in the ......................

Feeling a bit blue so writing in blue. Nobody can describe the affect of constant pain on a person, unless you have the misfortune to suffer constant and unremitting pain you would not understand what it is to go through it. With ehlers danlos syndrome pain is part of every day life, I can turn over in bed and my hip will sublax (partly dislocate), unfortunately this is something which happens often. I already have back pain as a constant reminder of my health problems, my knees crunch and grind and if I were to attempt to kneel down the pain would be terrible, I know I found out the hard way! My hips now give me constant problems, and often give way on me, making me walk in a very odd way. For the past few months my left shoulder has been causing problems and now my right one has joined in. Basically I am dropping to pieces. Ehlers danlos hypermobility syndrome is a pain in the.................................

GETTING STUCK!! Ehlers danlos strikes again!

I had the most horrible experience yesterday, most people would not find it so awful, after all it would not happen to most people, but because of my joints it happened to me, and I was mortified and panicked that such a simple movement could go so wrong.

I crouched down to see to something, I did it without thinking, but as soon as I was down in the crouched position I realised that I could not rise again. My husband saw what I was about to do and tried to warn me, but he was too late, I had already done it. Son in law grabbed my arm and tried to help me up but my knees had locked and I simply could not get the strength to push my legs upwards. My husband joined in, grabbing me underneath the arms and tried to pull but I was in such an awkward position that he could not get me up either and it took a third person to hold me under my left elbow to give me the leverage I needed to get back on to my feet! I know I carry too much weight, that probably had something to do with not being able to pick me up so as you can imagine I was so upset that it had taken three people to help me to rise. My legs were weak and shaking by the time I got back on my feet and I had to stand holding on to the windowsill for some time to gather myself before I could walk back to my seat and thankfully sink into the chair. I must have gone into panic mode, I can remember saying "help me, help me" over and over and it seemed an age before I stood up again though it was probably only a minute or two. My confidence is completely knocked and I am worried that if I should take a fall I would not be able to get back on my feet again. Both of my knees are gone, they grind and click and if I kneel it is absolute agony so the thought of having to get on to my knees is not a good one, though if I had been on my own when I crouched down I think the only option would have been to somehow roll myself on to my back, and then on to my side and crawl to the nearest object to be able to push my legs into position, whether I could do that or not remains to be seen, and I certainly do not want to try it just to see if I can manage! It must seem like such a simple thing to anyone else, and you probably are wondering what the fuss is about, but it has really worried me and my confidence is not good right now.