Today G announced that we were going out to lunch. Bearing in mind I am rather attached to my bed at the minute I really really didn't want to go. It seems other half is worrying that I haven't been eating this week, despite reassurance that its quite normal when unwell!
Choosing Italian - Zizzi's, for those that know it, is a reasonable chain of mid priced Italian food served by courteous staff. We ordered a variety of starters to share. So I did eat and enjoyed it immensly.... mussels in a white wine sauce, calamari in a light batter, goats cheese on bruschetta, simple green salad & rosemary & garlic warm bread sticks. Not forgetting the essential olives. In typical Italian style the waiter seemed genuinely pleased that we had enjoyed our feast and said perhaps that tonight I may enjoy a light omelette now that my lunch had brought a little colour to my cheeks.
So being on the mend is good and thank you G for the lunch, it seems anything with a dash of olive oil strengthens my spirit. They need strengthening too, for no 1 grandchild arrives for a week hopefully tomorrow. Laying in bed too long causes shoulder subluxing, so I can never be unwell for long its too bloody painful.
I am panicking a little as I am worried the little man will be bored and have spent the last half an hour looking for local 'holiday activities' for youngsters. Then I remembered mine were young once and we have never been the type of family that relied heavily on 'organised' activity. So bring on the glue, the pasta collages, the paint, the stories, the bug hunting..... the fun.
Sunday, 26 July 2009
Saturday, 25 July 2009
A post to give a responsible view on swine flu!
thejobbingdoctor.blogspot.com/2009/07/oh-dear.html
This is an excellent post from a real life GP. At the best of times when trying any new medication I have to give it a go at the weekend when husband is around to make sure I survive the experience. My guess is some lucozade/cammomile tea and bed rest for most would suffice! Found this post from a link in Dr Crippin's blog whose opinions on the swine flu can be found via blogs I read down there on the right.
This is an excellent post from a real life GP. At the best of times when trying any new medication I have to give it a go at the weekend when husband is around to make sure I survive the experience. My guess is some lucozade/cammomile tea and bed rest for most would suffice! Found this post from a link in Dr Crippin's blog whose opinions on the swine flu can be found via blogs I read down there on the right.
Have I got swine flu or am I just being a pig with EDS
I feel properly unwell. As a child when i was unwell (which was frequently) I was packed off to my grandmother's who had endless patience and kindness and small tempting meals made into smiley faces to try to get me too eat. She wouldn't nag or scold if I was tiresome, she would distract me... if it was summer or warm enough she would let me sleep in a lounger wrapped in a soft blanket whilst she did the gardening and she would chat. Each day she would insist that I was a little better and pleased that I had more energy - even if I wasn't better it would make me feel as though I was and this in turn would make me feel better. If it was winter she would bundle me up on the sofa and let me help her do the crossword. Making me feel like the cleverest person in the world.
She would rub my feet when they cramped and understand that placing them flat against a cool wall helped the endless cramping. She would change the sheets to soft flannelette when my skin hurt and bring warmed flannels if I had ear ache. When my children were little and they were ill I would remember the things she did and in turn would do them for mine. My daughters boyfriend has just had an operation and I am pleased to see that she is kind and thoughtful.
My dog is very pleased indeed that I am unwell because this means that he can 'pretend' to be sick too. For those of you who think dogs in a bed is revolting I am sorry but as soon as husband closes the front door he rushes up the stairs and joins me in my sick bed. We are an odd couple, he sighs when I do and I know he knows that I feel terrible. He helps me to feel less alone. I just wish he could change the bedlinen and run me a bath.
I know now that sometimes when I was sick as a child it was the ehlers danlos flaring because a bad flare is very much like the flu. I won't bore anyone with the details but if you have had the flu the symptoms that are like an EDS flare go like this -
severe joint & muscle pain
chronic irritable bowel with associated pain
feeling sick and dizzy/caused by low blood pressure
skin hurts (coz it does)
lack of appetite
bla bla bla
i also feel as though i probably have a chest infection
Now because of the swine flu I am not allowed to see the doctor if I have these symptoms and I think i need antibiotics for the chest infection. But I don't think I have swine flu and don't want to take the anti stuff. Perhaps the only way to see the GP is to lie to the receptionist, which by the way the surgery looks at present akin to a war zone, apparently to do with infection control which is joke.
Last week whilst picking up a prescription, the place was bare, and all were instructed to wash one's hands in the anti bug fluid which actually I am allergic to but never mind on entering and leaving the building. Most people seemed to be actively ignoring all instructions then going over to the touch screen to enter their details at the same time as cross infecting each other, no doubt. I know I could order the prescriptions over the Internet and then pick them up at the local chemist but that is a saga that requires a whole new thread! So anyway infection control is as i say a joke.
Family are bored with me feeling unwell now and despite the fact that I did not feel up to it I rose out of my pit and attempted to do some shopping. Not up to a supermarket I went to the local farm shop and came home with the following -
watercress, cheese twirls, chocolate cake, dog treats, chicken breasts, a geranium, a pretty ceramic holder to put my reading glasses in, chocolate ginger pieces, bacon, free range eggs carrots, runner beans, baking potatoes and a flyer about a car boot sale.
The things I should have got were not anywhere to be seen. Bizarrely I saw an ex-boyfriend's mother and his brother (very ex as I have been married 20 years) and I looked like complete shit, why that bothered me I don't know, I guess I would have liked both of them to say I saw S........ and she looked bloody fantastic. So not.
So anyway, if my temperature rises further and I start to get better in a few days then my guess is I have a touch of swine flu..... if my joints continue as bad as this with all other associated symptoms and my temperature remains lower than is normal for a person then its probably just the EDS. Lucky old me then....
She would rub my feet when they cramped and understand that placing them flat against a cool wall helped the endless cramping. She would change the sheets to soft flannelette when my skin hurt and bring warmed flannels if I had ear ache. When my children were little and they were ill I would remember the things she did and in turn would do them for mine. My daughters boyfriend has just had an operation and I am pleased to see that she is kind and thoughtful.
My dog is very pleased indeed that I am unwell because this means that he can 'pretend' to be sick too. For those of you who think dogs in a bed is revolting I am sorry but as soon as husband closes the front door he rushes up the stairs and joins me in my sick bed. We are an odd couple, he sighs when I do and I know he knows that I feel terrible. He helps me to feel less alone. I just wish he could change the bedlinen and run me a bath.
I know now that sometimes when I was sick as a child it was the ehlers danlos flaring because a bad flare is very much like the flu. I won't bore anyone with the details but if you have had the flu the symptoms that are like an EDS flare go like this -
severe joint & muscle pain
chronic irritable bowel with associated pain
feeling sick and dizzy/caused by low blood pressure
skin hurts (coz it does)
lack of appetite
bla bla bla
i also feel as though i probably have a chest infection
Now because of the swine flu I am not allowed to see the doctor if I have these symptoms and I think i need antibiotics for the chest infection. But I don't think I have swine flu and don't want to take the anti stuff. Perhaps the only way to see the GP is to lie to the receptionist, which by the way the surgery looks at present akin to a war zone, apparently to do with infection control which is joke.
Last week whilst picking up a prescription, the place was bare, and all were instructed to wash one's hands in the anti bug fluid which actually I am allergic to but never mind on entering and leaving the building. Most people seemed to be actively ignoring all instructions then going over to the touch screen to enter their details at the same time as cross infecting each other, no doubt. I know I could order the prescriptions over the Internet and then pick them up at the local chemist but that is a saga that requires a whole new thread! So anyway infection control is as i say a joke.
Family are bored with me feeling unwell now and despite the fact that I did not feel up to it I rose out of my pit and attempted to do some shopping. Not up to a supermarket I went to the local farm shop and came home with the following -
watercress, cheese twirls, chocolate cake, dog treats, chicken breasts, a geranium, a pretty ceramic holder to put my reading glasses in, chocolate ginger pieces, bacon, free range eggs carrots, runner beans, baking potatoes and a flyer about a car boot sale.
The things I should have got were not anywhere to be seen. Bizarrely I saw an ex-boyfriend's mother and his brother (very ex as I have been married 20 years) and I looked like complete shit, why that bothered me I don't know, I guess I would have liked both of them to say I saw S........ and she looked bloody fantastic. So not.
So anyway, if my temperature rises further and I start to get better in a few days then my guess is I have a touch of swine flu..... if my joints continue as bad as this with all other associated symptoms and my temperature remains lower than is normal for a person then its probably just the EDS. Lucky old me then....
Wednesday, 22 July 2009
osteoporosis link with EDS plus a little of me
Below is a link highlighting the lack of early detection of bone density problems and EDS. I am 44 soon to be 45 and last year broke my hand. Yes it hurt but I was surpised when results of a bone density scan were so poor. I now have to take alendronic acid once a week which is a pain as it must be taken on an empty stomach and you have to sit upright and eat or drink nothing for ages afterward. I also take a daily dose of Calceos. (calcium and vit d combination). Had I known my bone density was so bad I may have been able to avoid osteoporosis. My opinion is that on diagnosis of EDS bone density scans should be a matter of course. Fat chance I think this will ever happen.
www.philstar.com/Article.aspx?articleId=438330&publicationSubCategoryId=64
As I write dawn is breaking and I have had little sleep. Other half will wake in about an hour and a half and will go to the kitchen to put on the kettle. There he will scan the surrounds to see evidence of whether I have slept or not. The kettle will be warm, he will check pain meds, and me. I will undoubtedly not be a pretty sight. In a week or so it is our 20th wedding anniversary.
My cat has been staring at me for over half an hour and the dog my beautiful staffie is snoring and lying on his back with his legs in the air.
The font won't change but I don't care.
It is supposed to be summer and the clouds are fast moving and black, the rain is tropical and it is very windy. I am worried about daughter, she seems low in spirit and in pain. Letting go and allowing one's kid's to be adults is hard when at 19 it only seems a moment ago I held her in my arms and protected her with all my heart a tiny 6 pound baby. I still hold her in my heart and watch as she grows more beautiful. But the grown up world is tough I think, I know I can't stop time but if I had a choice I would give her the perfect life where nothing absolutely nothing ever made her sad. I know this to be a completely unrealistic notion but if I could it would be that way.
Next week I have grandson to stay for a week, this I don't mind at all. I do mind that no-one spoke to me about the arrangements and it seems I won't have a car as husband's is having an expensive 'fix'. humph...... for the record do not buy a volvo xc awd 2001 it seems a design fault with something called the viscous coupling? means it needs replacing, we are getting a re-conditioned part from Sweden and second hand this will cost £500.00. Great - car is comfortable sure but definately not the old old old reliable volvo 950 that we used to have. Thus far this year this car has cost us in the region of nearly two thousand I think. I am not best pleased. Husband is a gardener so we do need the awd but am beginning to think the old ways were the best - donkey and cart maybe!!
Well off to try that sleep thing again.
I hope to dream of sunshine and rainbows ...... hopefully a new camera for my birthday as mine is all broke but shhhh don't say its a secret........
www.philstar.com/Article.aspx?articleId=438330&publicationSubCategoryId=64
As I write dawn is breaking and I have had little sleep. Other half will wake in about an hour and a half and will go to the kitchen to put on the kettle. There he will scan the surrounds to see evidence of whether I have slept or not. The kettle will be warm, he will check pain meds, and me. I will undoubtedly not be a pretty sight. In a week or so it is our 20th wedding anniversary.
My cat has been staring at me for over half an hour and the dog my beautiful staffie is snoring and lying on his back with his legs in the air.
The font won't change but I don't care.
It is supposed to be summer and the clouds are fast moving and black, the rain is tropical and it is very windy. I am worried about daughter, she seems low in spirit and in pain. Letting go and allowing one's kid's to be adults is hard when at 19 it only seems a moment ago I held her in my arms and protected her with all my heart a tiny 6 pound baby. I still hold her in my heart and watch as she grows more beautiful. But the grown up world is tough I think, I know I can't stop time but if I had a choice I would give her the perfect life where nothing absolutely nothing ever made her sad. I know this to be a completely unrealistic notion but if I could it would be that way.
Next week I have grandson to stay for a week, this I don't mind at all. I do mind that no-one spoke to me about the arrangements and it seems I won't have a car as husband's is having an expensive 'fix'. humph...... for the record do not buy a volvo xc awd 2001 it seems a design fault with something called the viscous coupling? means it needs replacing, we are getting a re-conditioned part from Sweden and second hand this will cost £500.00. Great - car is comfortable sure but definately not the old old old reliable volvo 950 that we used to have. Thus far this year this car has cost us in the region of nearly two thousand I think. I am not best pleased. Husband is a gardener so we do need the awd but am beginning to think the old ways were the best - donkey and cart maybe!!
Well off to try that sleep thing again.
I hope to dream of sunshine and rainbows ...... hopefully a new camera for my birthday as mine is all broke but shhhh don't say its a secret........
Monday, 20 July 2009
because my comment response to last post was too long I turned it into a post
(edited to pop in some paragraphs)
If anyone manages to read all of this post you deserve a medal, please don't feel obliged to comment. I guess I am venting my spleen somewhat - bet you can tell.
Over here some years ago I had the benefit of being on a long term management plan, it served me well and I benefited from a specialised shoulder rehab course.
It was intensive and ongoing and concentrated on 'good shoulder behaviour' which was brilliant as having very poor proprioceptive skills locating muscles which had been switched off because the brain is a clever thing and does this to muscles which have endured dreadful pain. I believe its the brains way of coping with the pain, unfortunately this also meant that I ended holding my shoulder in what over here is known as the pain position and that is bad news as I was continually walking around with a dislocated shoulder.
With this specialist programme I practiced with a very patient physio who had worked with the English Rugby Team and specialised in shoulders, returning to 'hospital physio' as he was fed up with treating people with self inflicted injury! This marvelous man taught me and my brain to literally 'hold' my shoulder in and therefore woke up the muscles which support the area. It is not a cure but boy was it helpful.
Obviously they still dislocate if I were for example to sit on the floor and use my hand and therefore my arm to push myself from the floor to stand up. So I never sit on the floor alone and require a lift up from another person from under the arms to get me up again if I am down. But I don't walk around anymore with my shoulder just 'hanging out' as a result of the laws of gravity.
My daughter benefited from a years worth of twice weekly core stabilising physiotherapy,(the muscles inside which support the back and pelvis if strengthened help with posture and can help gait problems by taking the load away from the knees/ankles/hip simply by learning to locate these internal muscles and strengthen them as much as is possible with weakened/altered collagen fibres can literally get people who may have been previously wheelchair bound at least able to walk in the house.
She also benefited with a physio who took the time and trouble to learn about the condition and also take the advice of Professor Grahame's team at University College Hospital London. Strengthening the muscles from the inside out is felt over here to be extremely important as it is thought to benefit the hypermobile immensely, she now backs this up with Pilates. It was hard and locating again specific internal muscles is difficult with EDS if proprioception is difficult so patience dedication and tenacity was required. The experts in London recommend appropriate physiotherapy as an absolute must tailored specifically to the hypermobile.
I will keep my fingers crossed that the long term management plan is funded by medicare for you Veronica.
Here chiropractors/osteopathy is contraindicated although there are a few who find a good one who will align and relocate! few and far between though. The ethos here I believe is that a physiotherapist educated in EDS can really help the patient strengthen the muscles which in turn help to hold in the joints!
Physiotherapy particularly for children at Great Ormond Street Hospital in London is done on an in patient intensive fashion which is hard but parent's have reported good results. My daughter was diagnosed before these schemes were designed and I really really wish she had had the benefit of them from a young age.
Pain management courses tend to concentrate on managing pain from a multi-disciplinary approach incorporating pacing, distraction techniques and more. It is thought that many medications do not have good efficacy with the EDS patients but there needs I think to be more research in this area as to the cause. My personal opinion is that they can be of help we just probably need more!
I am not a great believer personally in NSAID's as some with EDS feel that if there is no swelling then their use 'may' make the hypermobile joint more vulnerable to injury but this is a subject with a definite 'for' and agaisnt' team. I also am allergic to nsaid's which precludes their use for me at least.
I do take neurontin for nerve pain which is an anti epileptic in essence but increasingly popular for chronic pain patients in lower doses. Others benefit from topomax also an aed. I don't get on with amitriptyline or dothiepin which is an anti depressant often used in very low doses to treat chronic pain, it gives me arythrimia which gets a little out of control but many swear by it and it is considered a useful med, popular with those who have fibromyalgia acommpanying their EDS.
I think medication is such a personal thing though and I have a history of bizarre and strange reactions to the most mundane of meds (am allergic to piriton a med here used to treat allergies) I do benefit from seeing a pain management specialist and do take a combination of medications some of which are pretty strong and opiod based but this has happened more recently as I have osteoarthritis, osteopenia etc.
Its weird how different approaches are in US to UK. It may also be the result of different health care systems and over here the funding is unlikely to take place for surgery if the end result is not as successful as it would be in a non EDS patient. I also think its a personal thing as I have chosen not to go along the surgery route as some have, as stories of failed surgeries have put me off somewhat to be honest. I do know that at some point I will probably have to have some but for now I guess I am surgery shy!
Wow that was a ridiculously long comment on my own blog! (now a post as it obviously was too long)
I agree Veronica, blogging is a sanity saver.
In a way I suppose perhaps naively that I would want to be able to unload the dishwasher after surgery! Currently don't do it anyhow and frankly am happy not to have it on my to do list for as long as I can get away with it!
As i have aged in my forties I am more of the hang loose type of dislocater - a permanently dislocated thumb for example is not an event traumatic to me and does not require painful relocating it just slides in/out and about at will. I am supposed to wear rigid splints at all times but I am afraid too much splinting renders me all claustrophic and I worry that my muscles will waste away completely if they are supported by exterior stuff. I think its important to go with what works best for each individual as despite the condition having a name common to all that suffer with it I really think that each person's experience is unique to them with common denominator's linking us all.
Well I can't type or think about what I am saying anymore and am worrying I am being pedantic in the extreme- deep breaths............ (repeating to myself .. it is OK to have an opinion)
Goodness me no one would ever think looking at me I had a sensible thought in my head. I love the blogging world I can talk and discuss away the ins and outs of EDS with people who understand implicitly about it without continually having to explain. Its great.
thank you for your comments.
If anyone manages to read all of this post you deserve a medal, please don't feel obliged to comment. I guess I am venting my spleen somewhat - bet you can tell.
Over here some years ago I had the benefit of being on a long term management plan, it served me well and I benefited from a specialised shoulder rehab course.
It was intensive and ongoing and concentrated on 'good shoulder behaviour' which was brilliant as having very poor proprioceptive skills locating muscles which had been switched off because the brain is a clever thing and does this to muscles which have endured dreadful pain. I believe its the brains way of coping with the pain, unfortunately this also meant that I ended holding my shoulder in what over here is known as the pain position and that is bad news as I was continually walking around with a dislocated shoulder.
With this specialist programme I practiced with a very patient physio who had worked with the English Rugby Team and specialised in shoulders, returning to 'hospital physio' as he was fed up with treating people with self inflicted injury! This marvelous man taught me and my brain to literally 'hold' my shoulder in and therefore woke up the muscles which support the area. It is not a cure but boy was it helpful.
Obviously they still dislocate if I were for example to sit on the floor and use my hand and therefore my arm to push myself from the floor to stand up. So I never sit on the floor alone and require a lift up from another person from under the arms to get me up again if I am down. But I don't walk around anymore with my shoulder just 'hanging out' as a result of the laws of gravity.
My daughter benefited from a years worth of twice weekly core stabilising physiotherapy,(the muscles inside which support the back and pelvis if strengthened help with posture and can help gait problems by taking the load away from the knees/ankles/hip simply by learning to locate these internal muscles and strengthen them as much as is possible with weakened/altered collagen fibres can literally get people who may have been previously wheelchair bound at least able to walk in the house.
She also benefited with a physio who took the time and trouble to learn about the condition and also take the advice of Professor Grahame's team at University College Hospital London. Strengthening the muscles from the inside out is felt over here to be extremely important as it is thought to benefit the hypermobile immensely, she now backs this up with Pilates. It was hard and locating again specific internal muscles is difficult with EDS if proprioception is difficult so patience dedication and tenacity was required. The experts in London recommend appropriate physiotherapy as an absolute must tailored specifically to the hypermobile.
I will keep my fingers crossed that the long term management plan is funded by medicare for you Veronica.
Here chiropractors/osteopathy is contraindicated although there are a few who find a good one who will align and relocate! few and far between though. The ethos here I believe is that a physiotherapist educated in EDS can really help the patient strengthen the muscles which in turn help to hold in the joints!
Physiotherapy particularly for children at Great Ormond Street Hospital in London is done on an in patient intensive fashion which is hard but parent's have reported good results. My daughter was diagnosed before these schemes were designed and I really really wish she had had the benefit of them from a young age.
Pain management courses tend to concentrate on managing pain from a multi-disciplinary approach incorporating pacing, distraction techniques and more. It is thought that many medications do not have good efficacy with the EDS patients but there needs I think to be more research in this area as to the cause. My personal opinion is that they can be of help we just probably need more!
I am not a great believer personally in NSAID's as some with EDS feel that if there is no swelling then their use 'may' make the hypermobile joint more vulnerable to injury but this is a subject with a definite 'for' and agaisnt' team. I also am allergic to nsaid's which precludes their use for me at least.
I do take neurontin for nerve pain which is an anti epileptic in essence but increasingly popular for chronic pain patients in lower doses. Others benefit from topomax also an aed. I don't get on with amitriptyline or dothiepin which is an anti depressant often used in very low doses to treat chronic pain, it gives me arythrimia which gets a little out of control but many swear by it and it is considered a useful med, popular with those who have fibromyalgia acommpanying their EDS.
I think medication is such a personal thing though and I have a history of bizarre and strange reactions to the most mundane of meds (am allergic to piriton a med here used to treat allergies) I do benefit from seeing a pain management specialist and do take a combination of medications some of which are pretty strong and opiod based but this has happened more recently as I have osteoarthritis, osteopenia etc.
Its weird how different approaches are in US to UK. It may also be the result of different health care systems and over here the funding is unlikely to take place for surgery if the end result is not as successful as it would be in a non EDS patient. I also think its a personal thing as I have chosen not to go along the surgery route as some have, as stories of failed surgeries have put me off somewhat to be honest. I do know that at some point I will probably have to have some but for now I guess I am surgery shy!
Wow that was a ridiculously long comment on my own blog! (now a post as it obviously was too long)
I agree Veronica, blogging is a sanity saver.
In a way I suppose perhaps naively that I would want to be able to unload the dishwasher after surgery! Currently don't do it anyhow and frankly am happy not to have it on my to do list for as long as I can get away with it!
As i have aged in my forties I am more of the hang loose type of dislocater - a permanently dislocated thumb for example is not an event traumatic to me and does not require painful relocating it just slides in/out and about at will. I am supposed to wear rigid splints at all times but I am afraid too much splinting renders me all claustrophic and I worry that my muscles will waste away completely if they are supported by exterior stuff. I think its important to go with what works best for each individual as despite the condition having a name common to all that suffer with it I really think that each person's experience is unique to them with common denominator's linking us all.
Well I can't type or think about what I am saying anymore and am worrying I am being pedantic in the extreme- deep breaths............ (repeating to myself .. it is OK to have an opinion)
Goodness me no one would ever think looking at me I had a sensible thought in my head. I love the blogging world I can talk and discuss away the ins and outs of EDS with people who understand implicitly about it without continually having to explain. Its great.
thank you for your comments.
Sunday, 19 July 2009
bla bla bla
As I write the tips of my fingers are tingling and not in a nice way I must say.
I have added to my google reader a few more blogs of late a couple of which humble me in the authors ability to write simply and yet able to get across to the reader - an emotion, an experience, a thought ...... so well. I find myself humbled.
Sometimes I am reading by way of pain distraction and leave the daily/weekly post of some one's life whom I have never met nor am likely to feeling empathy that I find difficult to put into words. Occasionally the content means I absolutely have to check my reader to find out how things are going. The Internet has opened up a whole new world for me when sometimes mine can be a little small.
For some reason I am attracted to Australian/Tasmanian/NZ bloggers who seem to me to have a refreshing frankness often lacking in UK blogs. (no offence to UK bloggers its just a current personal preference) Although my geography is dreadful having been thrown out of geography lessons at the convent I attended by a nun who found out that I along with a bunch of other girls were slipping spirits from our parent's drinks cabinets into our flasks to accompany our packed lunches. This was obviously very bad behaviour indeed and I have completely forgiven the snitch (not) who dobbed us in - we were afterall fourth formers trusted to eat our lunch in a room in the eaves away from the rest of the school in a cold attic room where a drop of brandy in our coffee seemed entirely appropriate. I now understand that this was a complete breach of trust and understand that our behaviour was reprehensible...... Why that meant I couldn't attend geography lessons I will never know and I never discussed it with my parents as my guess is as they were paying the fees they would have had something to say about my lack of geography tuition. At the time I didn't mind, I disliked geography probably because of the sister who taught us about the world! She claimed that I would 'infect' the other girl's with what I didn't really know or care as it meant that I got to sit in a very cosy armchair in the library reading, an activity I much preferred to Geography. In retrospect I feel the gap in my education shows. I digress as ever So I guess I am really saying thank you to other bloggers who do not know it but when my house sleeps and I am not, are providing a constant stream of 'other world's' which often make me laugh out loud and in the next breath cry. A snapshot of lives which are not mine I am privileged to share.
At the minute I am going through one of those phases where I think perhaps I should visit the doctor. But know that I will not as I would simply be providing him with a list of things which he can do absolutely nothing about. So by way of blog moan to save the NHS -
MY LIST
These things hurt -
hips
knees
thumbs
hand that broke year ago
sacro iliac place (sp)
neck
a pain I can't really describe in my chest
OK there is more but am boring myself... and also think I may have blogged similarily previously! Perhaps I could go to the Pain Management Clinic and see the scary physio who had not looked at my notes and as I was trying politely to explain about my EDS and without meaning to sound ungrateful turning down a few of her ridiculous suggestions as to ways to combat my condition (circuit training to give an example) she shouted at me ARE YOU JUST HERE TO GET MORE DRUGS... to this day I am still quite proud of my reaction. I won't go into it here but suffice to say I was extremely polite and she left the room.
I then promptly burst into tears of frustration... some time later the nice 'important' consultant man came into the room and apologised explaining she had recently started working at the pain clinic bla bla bla.....
In the meantime two other physios whom I had previously seen for periods of over 1-2 years in blocks of 12 week sessions elongated each time by clever massaging of referrals and therefore NHS statistics, came in and chatted with the door open, handing me tissue's for my childish tears. Bearing in mind they both actually know me well they knew I am SO NOT a drug requester.... they asked after my children and my husband and we even laughed together how despite their very best efforts I would never meet the statistics required for a modern physiotherapy department which means they could discharge me and I would be better. A six week blast of physio does not cure EDS, both hugged me gently but affectionately. Their kindness I will always remember I hope they educated the 'nasty one' about EDS but there is something inside me which thinks she will always remain somewhat rude, dismissive, cruel, uncaring and if I say so myself in a very bitchy fashion unattractive. My husband felt I should have made a formal complaint but if I complained each time my EDS was misunderstood and me along with it in an NHS setting my life would be filled with complaining. So instead I moan here and it helps! Probably because I can do so without prejudice.... I hope.
I have added to my google reader a few more blogs of late a couple of which humble me in the authors ability to write simply and yet able to get across to the reader - an emotion, an experience, a thought ...... so well. I find myself humbled.
Sometimes I am reading by way of pain distraction and leave the daily/weekly post of some one's life whom I have never met nor am likely to feeling empathy that I find difficult to put into words. Occasionally the content means I absolutely have to check my reader to find out how things are going. The Internet has opened up a whole new world for me when sometimes mine can be a little small.
For some reason I am attracted to Australian/Tasmanian/NZ bloggers who seem to me to have a refreshing frankness often lacking in UK blogs. (no offence to UK bloggers its just a current personal preference) Although my geography is dreadful having been thrown out of geography lessons at the convent I attended by a nun who found out that I along with a bunch of other girls were slipping spirits from our parent's drinks cabinets into our flasks to accompany our packed lunches. This was obviously very bad behaviour indeed and I have completely forgiven the snitch (not) who dobbed us in - we were afterall fourth formers trusted to eat our lunch in a room in the eaves away from the rest of the school in a cold attic room where a drop of brandy in our coffee seemed entirely appropriate. I now understand that this was a complete breach of trust and understand that our behaviour was reprehensible...... Why that meant I couldn't attend geography lessons I will never know and I never discussed it with my parents as my guess is as they were paying the fees they would have had something to say about my lack of geography tuition. At the time I didn't mind, I disliked geography probably because of the sister who taught us about the world! She claimed that I would 'infect' the other girl's with what I didn't really know or care as it meant that I got to sit in a very cosy armchair in the library reading, an activity I much preferred to Geography. In retrospect I feel the gap in my education shows. I digress as ever So I guess I am really saying thank you to other bloggers who do not know it but when my house sleeps and I am not, are providing a constant stream of 'other world's' which often make me laugh out loud and in the next breath cry. A snapshot of lives which are not mine I am privileged to share.
At the minute I am going through one of those phases where I think perhaps I should visit the doctor. But know that I will not as I would simply be providing him with a list of things which he can do absolutely nothing about. So by way of blog moan to save the NHS -
MY LIST
These things hurt -
hips
knees
thumbs
hand that broke year ago
sacro iliac place (sp)
neck
a pain I can't really describe in my chest
OK there is more but am boring myself... and also think I may have blogged similarily previously! Perhaps I could go to the Pain Management Clinic and see the scary physio who had not looked at my notes and as I was trying politely to explain about my EDS and without meaning to sound ungrateful turning down a few of her ridiculous suggestions as to ways to combat my condition (circuit training to give an example) she shouted at me ARE YOU JUST HERE TO GET MORE DRUGS... to this day I am still quite proud of my reaction. I won't go into it here but suffice to say I was extremely polite and she left the room.
I then promptly burst into tears of frustration... some time later the nice 'important' consultant man came into the room and apologised explaining she had recently started working at the pain clinic bla bla bla.....
In the meantime two other physios whom I had previously seen for periods of over 1-2 years in blocks of 12 week sessions elongated each time by clever massaging of referrals and therefore NHS statistics, came in and chatted with the door open, handing me tissue's for my childish tears. Bearing in mind they both actually know me well they knew I am SO NOT a drug requester.... they asked after my children and my husband and we even laughed together how despite their very best efforts I would never meet the statistics required for a modern physiotherapy department which means they could discharge me and I would be better. A six week blast of physio does not cure EDS, both hugged me gently but affectionately. Their kindness I will always remember I hope they educated the 'nasty one' about EDS but there is something inside me which thinks she will always remain somewhat rude, dismissive, cruel, uncaring and if I say so myself in a very bitchy fashion unattractive. My husband felt I should have made a formal complaint but if I complained each time my EDS was misunderstood and me along with it in an NHS setting my life would be filled with complaining. So instead I moan here and it helps! Probably because I can do so without prejudice.... I hope.
Tuesday, 14 July 2009
invisible disability
thtp://www.midlothianexchange.com/index.php/news/article/surviving-the-stigma-of-invisible-disabilities/19683/
Just a quick post to put the above link which I found via a link in a blog but I don't think I have to worry about referencing it as it is a newspaper article therefore publicly available. I am so rubbish at links so it may or may not work.
The references in the article may be to EDS Vascular Type as it says life threatening. Hypermobility Type EDS is painful but not thought to be life threatening as far as I am aware. The topic however is close to my heart, particularly the references to disabled parking permits. It seems though in the USA surgery is a more favoured option?
note: I have edited this post slightly as I wrote it in a hurry and felt it was a little brusque which was not my intention.
Just a quick post to put the above link which I found via a link in a blog but I don't think I have to worry about referencing it as it is a newspaper article therefore publicly available. I am so rubbish at links so it may or may not work.
The references in the article may be to EDS Vascular Type as it says life threatening. Hypermobility Type EDS is painful but not thought to be life threatening as far as I am aware. The topic however is close to my heart, particularly the references to disabled parking permits. It seems though in the USA surgery is a more favoured option?
note: I have edited this post slightly as I wrote it in a hurry and felt it was a little brusque which was not my intention.
Wednesday, 8 July 2009
Just popped in....
Happy Birthday to my beautiful amazing 19 year old.
I hope you are enjoying your expensive meal out with boyfriend.
I am honoured that you allowed me to join you and your female buddies for lunch.
The day you were born was the men's final of Wimbledon and in my fug of labour I misunderstood the 4 consultants in my room as jolly good treatment and care!
It turned out that my room had the TV with the best reception and the party in my room was nothing to do with me or you.
The clapping and enthusiastic cheering was not for me and the superb way I was coping with labour, in my pethidine haze I actually believed the doctor's were giving me a round of applause.
It turned out it was S Edberg bt B Becker 6-2 6-2 3-6 3-6 6-4
I hope you are enjoying your expensive meal out with boyfriend.
I am honoured that you allowed me to join you and your female buddies for lunch.
The day you were born was the men's final of Wimbledon and in my fug of labour I misunderstood the 4 consultants in my room as jolly good treatment and care!
It turned out that my room had the TV with the best reception and the party in my room was nothing to do with me or you.
The clapping and enthusiastic cheering was not for me and the superb way I was coping with labour, in my pethidine haze I actually believed the doctor's were giving me a round of applause.
It turned out it was S Edberg bt B Becker 6-2 6-2 3-6 3-6 6-4
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