Just popped into to give this link (I know some of you have been there already!)
http://theeyedocblog.com/2009/09/02/ehlers-danlos-pediatrician-guide/#comment-720
Monday, 28 September 2009
Sunday, 27 September 2009
PMT & Me
Well having posted on Veronica's blog @ sleeplessnights, that I would be posting on this here I am.
The thing is I haven't actually had a period for six months or so now. No I am not pregnant. I am forty five.
The link below in red is to an extremely well written article by Professor Bird a specialist in the UK with vast knowledge of Ehlers Danlos. It is on the marfan friends forum although is available also on various other forums if you join them and available in hard copy in the UK. I don't really like suggesting that one should use any forum although I am not quite sure why, maybe because what suits one may not another I guess. Anyway, if you have a few moments, have EDS then you may find this article of interest.
EDS Hormones
I come from a family with a history of early menopause and I spoke briefly on the phone to my GP recently who suggested I come in and have 'the' blood test. The one which will let me know whether I am menopausal. I should go get it done I guess. My excuse is that I am currently carless! I am not scared in anyway of the answer, my guess is I am in part simply because I have so many of the symptoms that I don't really need a blood test to tell me. My apathy in getting it done is probably part of it all!
I can no longer blame chronic behaviour though on PMT! My other half is perplexed it seems. My bendy joints are more painful now all the time and not more so pre-menstrually. I am grumpy and sometimes quite scary I think in my hormonal stupor, so when I can be bothered I shall go & get 'the' test. I'll let you know the outcome!
Anyone with EDS will understand that pre-menstrually bendy joints are very much more prone to the pitfalls of living with the condition than at other times (which by the way is bad enough) So because of hormones pre-menstrually we complain of pain a lot, we dislocate/sublucate more and we trip, fall & generally cannot co-ordinate our limbs as our propriproception (sp) worsens. Ideally it would be best at these times if we languished in bed (as women of a certain class were able to in times of old) having general attacks of the vapours! It would certainly mean that our injuries would be less & our mood improved possibly with regular doses of laudanum (sp again). However, we now know that lying in bed makes collagen deficient muscles - wither & become even less able to support our decrepit joints.
So next time you see a women staggering around, possibly wailing in pain, shouting at all 'n sundry. Swathed in protective supports. With bruises suggesting she may have been in a drunken brawl. Do not jump to the conclusion that she is a drunk. She may well have EDS & PMT.
Or it may be me - peri-menopausal with EDS! Until I have 'the' test that is the label for me.
The thing is I haven't actually had a period for six months or so now. No I am not pregnant. I am forty five.
The link below in red is to an extremely well written article by Professor Bird a specialist in the UK with vast knowledge of Ehlers Danlos. It is on the marfan friends forum although is available also on various other forums if you join them and available in hard copy in the UK. I don't really like suggesting that one should use any forum although I am not quite sure why, maybe because what suits one may not another I guess. Anyway, if you have a few moments, have EDS then you may find this article of interest.
EDS Hormones
I come from a family with a history of early menopause and I spoke briefly on the phone to my GP recently who suggested I come in and have 'the' blood test. The one which will let me know whether I am menopausal. I should go get it done I guess. My excuse is that I am currently carless! I am not scared in anyway of the answer, my guess is I am in part simply because I have so many of the symptoms that I don't really need a blood test to tell me. My apathy in getting it done is probably part of it all!
I can no longer blame chronic behaviour though on PMT! My other half is perplexed it seems. My bendy joints are more painful now all the time and not more so pre-menstrually. I am grumpy and sometimes quite scary I think in my hormonal stupor, so when I can be bothered I shall go & get 'the' test. I'll let you know the outcome!
Anyone with EDS will understand that pre-menstrually bendy joints are very much more prone to the pitfalls of living with the condition than at other times (which by the way is bad enough) So because of hormones pre-menstrually we complain of pain a lot, we dislocate/sublucate more and we trip, fall & generally cannot co-ordinate our limbs as our propriproception (sp) worsens. Ideally it would be best at these times if we languished in bed (as women of a certain class were able to in times of old) having general attacks of the vapours! It would certainly mean that our injuries would be less & our mood improved possibly with regular doses of laudanum (sp again). However, we now know that lying in bed makes collagen deficient muscles - wither & become even less able to support our decrepit joints.
So next time you see a women staggering around, possibly wailing in pain, shouting at all 'n sundry. Swathed in protective supports. With bruises suggesting she may have been in a drunken brawl. Do not jump to the conclusion that she is a drunk. She may well have EDS & PMT.
Or it may be me - peri-menopausal with EDS! Until I have 'the' test that is the label for me.
Friday, 18 September 2009
Inside my Head
This week I have felt odd inside my head. Too many negative thoughts for my liking. I am not normally prone to deep contemplation perhaps the planets are doing something or other. I feel the need for change, to break free, how I know not how. Perhaps this is a mid life crisis. Or perhaps I deliberately do not let my mind wander like this lest I become a disgruntled middle aged woman. I want to talk to other half about where our lives our going and what our future holds but am not sure i want the conversation as i feel I know how it will go. My guess is our future is predictable.
Possibly I am bored, because of the EDS and all the other stuff that goes with it I feel backed into a corner. I wonder as I look back what I have actually achieved and look forward and can see that possibly I kid myself a lot. Actually I feel as though I have become a bore, the EDS bores me, all of it... Osteoarthritis, osteoporosis, post herpatic neuraliga of trimegal nerve (sp). I can't think of a way to climb out of it all. Each year I promise myself that perhaps I will go to college, do an open university course but I don't and am not sure why. Actually I do, being in pain 24/7 means I find life a bit of a struggle in reality and its actually pretty exhausting. Having the time for my kids who both still live at home, even though they are grown (17 & 19) and all that jazz is about as much as I can do most of the time. But I know in the next five years or so or sooner they will leave home and I will be here still. Some would say I lack motivation they can say what they like frankly, living with EDS is tough sometimes and at the minute its tough.
I listened to a radio programme yesterday where severely disabled people go sailing competitive sailing and once person who is paralysed and uses only their tongue - sails competitively. I think this is another thing that made me feel like a pile of crap. I felt guilty, lazy and again sorry for myself. Why can't I just get over myself....
I have been married 20 years and was chatting away earlier on to husband who was in reality reading the paper. He was tired as had been working all day and he wasn't listening he has developed the knack of making appropriate noises at correct intervals to give the impression that he is. I started to actually say out loud - god am I boring you rigid, I bet after all these years you must look at me and think for ****ks sake shut up. He didn't obviously because he was doing that 'knack' think mmmmmmmmmm......
I am aware that I am feeling sorry for myself and for some reason I am indulging this for once. It means I have to think about stuff and to be honest right now I feel a bit resentful. At times like this other half should watch out, he should know by now that when I wear black leggings and biker boots all is not well. But I wonder whether he would notice frankly if I came in stark naked. Now don't get all worried and think oh god there's a divorce on the cards, I am in love with my husband and I think he still with me. But being married for a long time can mean that sometimes things get stale, perhaps its time I got my hair cut.
Possibly I am bored, because of the EDS and all the other stuff that goes with it I feel backed into a corner. I wonder as I look back what I have actually achieved and look forward and can see that possibly I kid myself a lot. Actually I feel as though I have become a bore, the EDS bores me, all of it... Osteoarthritis, osteoporosis, post herpatic neuraliga of trimegal nerve (sp). I can't think of a way to climb out of it all. Each year I promise myself that perhaps I will go to college, do an open university course but I don't and am not sure why. Actually I do, being in pain 24/7 means I find life a bit of a struggle in reality and its actually pretty exhausting. Having the time for my kids who both still live at home, even though they are grown (17 & 19) and all that jazz is about as much as I can do most of the time. But I know in the next five years or so or sooner they will leave home and I will be here still. Some would say I lack motivation they can say what they like frankly, living with EDS is tough sometimes and at the minute its tough.
I listened to a radio programme yesterday where severely disabled people go sailing competitive sailing and once person who is paralysed and uses only their tongue - sails competitively. I think this is another thing that made me feel like a pile of crap. I felt guilty, lazy and again sorry for myself. Why can't I just get over myself....
I have been married 20 years and was chatting away earlier on to husband who was in reality reading the paper. He was tired as had been working all day and he wasn't listening he has developed the knack of making appropriate noises at correct intervals to give the impression that he is. I started to actually say out loud - god am I boring you rigid, I bet after all these years you must look at me and think for ****ks sake shut up. He didn't obviously because he was doing that 'knack' think mmmmmmmmmm......
I am aware that I am feeling sorry for myself and for some reason I am indulging this for once. It means I have to think about stuff and to be honest right now I feel a bit resentful. At times like this other half should watch out, he should know by now that when I wear black leggings and biker boots all is not well. But I wonder whether he would notice frankly if I came in stark naked. Now don't get all worried and think oh god there's a divorce on the cards, I am in love with my husband and I think he still with me. But being married for a long time can mean that sometimes things get stale, perhaps its time I got my hair cut.
Friday, 4 September 2009
various nothings
I am trying to work out why some comments are published automatically and others seem to need my approval. Is this something that the author of the comments controls or me. So somewhat confused on that one!
It is exactly 3:48am as I write which I guess means I have an attack of insomnia. Which sometime happens bizarrely when I am overtired.
Yesterday I had the pleasure of being stuck in a lift oh yes I mean pleasure as was rescued by 7 burly firemen!!!! I would elaborate on the story but have rung friends and relatives with the excitement and detail, that I have albeit run out of the ins and the outs of it all. Not being over keen on lifts I am pleased to say I did not panic!!! So mega proud of myself. What is it about Firemen!! 2 Fire engines, sirens the lot. The only thing I will say is that my parent's will not be buying the apartment which we were viewing!!! I wonder why?
A lot has been going on in family life, most of which I can't write here as that would involve breaking confidences and I won't do that. I wanted to so much but sometimes its just not appropriate.
I enjoyed my week with the little man, who wanted to stay longer and my whole heart goes out to Veronica from Sleepless Nights who has young children. As a step grandmother with EDS a week with the little man was fantastic for so many reasons but I am absolutely and completely exhausted. As ever other half did not take time off so we were left to our own devices.
As I am carless at present in a way this meant we were free to just be us together in our little world of conversations. Some of which were enlightening. J is fascinated at the moment by the Police and wanted to know why he saw no Police whilst he stayed with us in the countryside. So we talked a lot about city life versus country life.
I am getting my car in apprx 10 weeks which is a long wait but worth it. A teeny weenie Peugeot automatic. As the children are all but grown and one of them drives the other just about to start learning I don't need a big car anyway. this is an automatic as the EDS prevents me from driving a manual. It will apparently do 60 miles to the thingy! Thank you to my parents for this gift words cannot describe how much their generosity means to me.
The wait apparently is the same for all new cars - that are small. I thought the recession meant that there were rows of hundreds of them waiting to be bought! My ancient car is to go for scrappage under the Government scheme so that means we were able to get £2000 off the price of Peugeot. Thank you parents thank you for the rest. I am unable to work and husband works hard hard hard we just cannot run to a new car and for me this will be a dream as it will not need an mot for three years!!!!!!!! I feel guilty really as I am completely motorway phobic and shhh don't tell anyone really do avoid large roundabouts. But I am determined to be a little more adventurous this time round. Husband drives a large 4 wheel Volvo which he needs for work purposes to keep equipment in and it serves well for longer journeys also as it is comfortable.
by way of confession i keep thinking I need a wheelchair - this is in the category of not discussing out loud with anyone apart from here obviously. I could not perambulate one myself due to shoulder and hand elbow issues so would need an electric one. My little car would probably not accommodate one of these. How do I tell husband I just don't think my legs can hold me up anymore. I have done well to keep on my feet with the EDS for 45 years but truly even parked in a disabled bay near the shop is agony these days. This is in the label - trying not to face up to reality, denial and lots of other stuff really. Along with rambling as i cannot sleep and there is no one awake to see me writing my blog. So I feel i can write this here and hopefully it won't be judgement day on the comment front.
I am admiring Veronica's eloquent posts and beautiful layout of photography although must be honest am finding the scrolling photo's a little confusing! I feel like a rubbish blogger in comparison to her wonderful words but I persevere, a word I taught J last week along with many others.
It has taken me ages to post this due to hands etc and loads of stops because of. Because I had bloggers block I felt I should just write even if it were nonsense of sorts to get me going again. I feel better for it!!
It is exactly 3:48am as I write which I guess means I have an attack of insomnia. Which sometime happens bizarrely when I am overtired.
Yesterday I had the pleasure of being stuck in a lift oh yes I mean pleasure as was rescued by 7 burly firemen!!!! I would elaborate on the story but have rung friends and relatives with the excitement and detail, that I have albeit run out of the ins and the outs of it all. Not being over keen on lifts I am pleased to say I did not panic!!! So mega proud of myself. What is it about Firemen!! 2 Fire engines, sirens the lot. The only thing I will say is that my parent's will not be buying the apartment which we were viewing!!! I wonder why?
A lot has been going on in family life, most of which I can't write here as that would involve breaking confidences and I won't do that. I wanted to so much but sometimes its just not appropriate.
I enjoyed my week with the little man, who wanted to stay longer and my whole heart goes out to Veronica from Sleepless Nights who has young children. As a step grandmother with EDS a week with the little man was fantastic for so many reasons but I am absolutely and completely exhausted. As ever other half did not take time off so we were left to our own devices.
As I am carless at present in a way this meant we were free to just be us together in our little world of conversations. Some of which were enlightening. J is fascinated at the moment by the Police and wanted to know why he saw no Police whilst he stayed with us in the countryside. So we talked a lot about city life versus country life.
I am getting my car in apprx 10 weeks which is a long wait but worth it. A teeny weenie Peugeot automatic. As the children are all but grown and one of them drives the other just about to start learning I don't need a big car anyway. this is an automatic as the EDS prevents me from driving a manual. It will apparently do 60 miles to the thingy! Thank you to my parents for this gift words cannot describe how much their generosity means to me.
The wait apparently is the same for all new cars - that are small. I thought the recession meant that there were rows of hundreds of them waiting to be bought! My ancient car is to go for scrappage under the Government scheme so that means we were able to get £2000 off the price of Peugeot. Thank you parents thank you for the rest. I am unable to work and husband works hard hard hard we just cannot run to a new car and for me this will be a dream as it will not need an mot for three years!!!!!!!! I feel guilty really as I am completely motorway phobic and shhh don't tell anyone really do avoid large roundabouts. But I am determined to be a little more adventurous this time round. Husband drives a large 4 wheel Volvo which he needs for work purposes to keep equipment in and it serves well for longer journeys also as it is comfortable.
by way of confession i keep thinking I need a wheelchair - this is in the category of not discussing out loud with anyone apart from here obviously. I could not perambulate one myself due to shoulder and hand elbow issues so would need an electric one. My little car would probably not accommodate one of these. How do I tell husband I just don't think my legs can hold me up anymore. I have done well to keep on my feet with the EDS for 45 years but truly even parked in a disabled bay near the shop is agony these days. This is in the label - trying not to face up to reality, denial and lots of other stuff really. Along with rambling as i cannot sleep and there is no one awake to see me writing my blog. So I feel i can write this here and hopefully it won't be judgement day on the comment front.
I am admiring Veronica's eloquent posts and beautiful layout of photography although must be honest am finding the scrolling photo's a little confusing! I feel like a rubbish blogger in comparison to her wonderful words but I persevere, a word I taught J last week along with many others.
It has taken me ages to post this due to hands etc and loads of stops because of. Because I had bloggers block I felt I should just write even if it were nonsense of sorts to get me going again. I feel better for it!!
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