Monday, 16 July 2012
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.
Wednesday, 11 July 2012
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.
Friday, 6 July 2012
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.
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.
Monday, 2 July 2012
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.
Friday, 29 June 2012
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.
Monday, 25 June 2012
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.
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.
Sunday, 24 June 2012
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!
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!
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