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!
Saturday, 23 June 2012
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.
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.
Saturday, 9 June 2012
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.
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.
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