So Saddened to read on Sleepless Nights that Veronica's nan has passed away. My 'nana' was the best thing in my life, if I close my eyes even now I remember her smell. I hope Veronica's nan meets mine I think they would get on.
I haven't blogged much of late, partly due to a bad bout of torticollis something that my father, daughter and myself have from time to time. It is really painful and I think this bout was brought on from visit to eye consultant who tries hard to understand that putting my chin and face/forehead in contraption so that he can look in my eye causes me an ehlers danlos problem. I co-operate each time but this time the very next day woke with my head stuck on my shoulder and unable to look to the left. I have been a very very grumpy madam this week and wonder why family around me puts up with me frankly.
I also got it into my head that I wanted to go to Greece, so popped on line and even with last minute bargains (apparently) realised that we are skint and cannot afford it. now I know that many people in the world have a far shittier time than me but I have been wallowing in self pity on this one. If i could stamp my feet I would have been since the weekend. It will abate this feeling that I want to get away from the mundane things in life and I will smile again and be my normal cheery self but for the minute I am indulging in sulking.
what else, if anyone out there has post herpatic neuralgia of the trimegal (sp) nerve do let me know any tips to deal with the agony of it. The episode has abated somewhat so I can at least mention it but I do think its unfair that I have this as well as EDS bla bla......
Katie Price if you are reading this (so not) calm down - go home - have a think and leave Jordan in Ibetha!! Some days I wish I had an alter ego - she would be dancing (not Jordan stylie!!!) - mobile - pain free - funny - witty - well educated - working - and well off. Instead I am a mother with ehlers danlos, ostopenia, osteoarthritis, etc. of teenagers who are incredibly patient with me, are used to me being asleep instead of awake at bizarre times of the day. Other half goes to bed very very early and I sometime wonder whether I will go truly mad when they eventually move out from half watching tv programmes and browsing blogs on other peoples lives!
Well thats me for now - as ever - nothing particularly intelligent or thought provoking. I did receive a package from the Open University today and confession time - fell asleep reading it!
Am signing off tonight and my thoughts are very much with Sleepless Nights (see blogs I read). How strange that through blogging we can read and care about relative strangers across the globe. A positive side of the internet I think, connections made like invisible hands held across oceans.
Thursday, 25 June 2009
Friday, 12 June 2009
Other People's Lives
I was inordinately pleased on reading a blog I follow http://www.mythreeringcircus.com/ that very sick child has come home from hospital in time for her twin siblings 13th birthday. A short post today, beautifully written as ever. This blog is superb, describes a family situation which makes difficult reading somedays. In all honesty it made me feel pretty silly about row yesterday and the post humbled me.
Daughter arrived home today with a heart keyring with my initial on it and on the other side these words - Love is Long Life..... its her way of saying sorry mum, I had forgiven already and we hugged a special hug - mother's and daughters can do this row-forgive-forget thing. Husband shook his head and raised eyebrows at son - the look said it all and I think if verbalised it would have said 'women!'
edited to add above & removed some boring 'stuff'.
Daughter arrived home today with a heart keyring with my initial on it and on the other side these words - Love is Long Life..... its her way of saying sorry mum, I had forgiven already and we hugged a special hug - mother's and daughters can do this row-forgive-forget thing. Husband shook his head and raised eyebrows at son - the look said it all and I think if verbalised it would have said 'women!'
edited to add above & removed some boring 'stuff'.
Thursday, 11 June 2009
Teenagers! Whose the grown up?
Where did the years go I have wondered today. Looking back it seems like a moment ago that I was reading bedtime stories.... now its different. Don't get me wrong, neither of my children it seems are the rebellious sort so we have been lucky. My husband and I (that makes me sound like the queen) so I shall refer to other half as G from now. G and I were pretty rebellious and it seems that we have produced offspring who to all intense purposes never do anything outrageous. So when there is a fall out it hits me hard and today I had a fallout with eldest daughter. On the whole we muddle along, I am not the type of parent who particularly wants to be 'the best friend or a sister' but we do communicate, on occasion B says it makes a difference that we can talk. Well today we shouted and I am feeling flat as a result. B is efficient at playing one parent off against the other and sometimes it makes me really annoyed as I simply cannot understand why G cannot see when she is doing it. The end result means that he ends up being the darling daddy and I.... the mean, nasty bleep mum!!
I wish I was a teenager who could get away with emotional blackmail and then walk out of the door having said really really hurtful words with a nonchalance that seems practiced. I love my B so much which is why I guess harsh words and lost tempers have spoilt my day, I drove to a local beauty spot which thankfully on week days is a quiet retreat for locals. I sat in my car and I wept, not sobby tears just silently sat there with tears flowing salt stinging my skin. Not for myself but out of sheer frustration, as a parent all I really want is for my kids to be happy, healthy and if i am honest wealthy. Is that a bad thing?
In these situations G maddenly always remains cool and never ever loses his temper or in my opinion says what needs to be said, in order to avoid an argument. In all honesty I am still annoyed - I have asked G that when this tactic is played, that he refuses to have the conversation. It will blow over, I am a Leo and can't abide for a tiff to linger.
However, who am I really annoyed with, myself? B? or G? When the children were little we hoped that we are teaching them right from wrong, manners, etc... (and how to swear lol.....) Jokes aside, when they are adults so to speak it is much harder when they are deliberately nasty or rude. Is it my job now to let B know that there are consequences to treating people like shit... I think so. I have asked G again to try to look at the situation as if he were a third party looking in, in an an attempt for him to see the manipulative behaviour.
When my feelings are very very hurt I sleep, so I slept earlier and there was no supper cooked. I had no appetite and did not really like fish and chips so refused anything. Younger son was not in thankfully when stupid row occurred but knew I was upset. His sister had gone out without saying goodbye to me, although she did to G, which I always think is such a hurtful way of expressing oneself but understand it is teenage angst. He gave me some of his takeaway, by saying mum you should eat something but take it now before I change my mind!! He is 16.
I have felt sad all evening, out of proportion really to the row but sometimes the silliest of things make me sadder than they should. Perhaps I will delete this blog post tomorrow I am not sure. I suppose I am saying, no matter how much ones toddler is driving you mad they generally wake up in the morning after a bad day with a smile and kiss. Cherish that time, teenagers are not so forgiving....
Oh by the way in relation to the last post.... we went to the big garden show and I drank a little more than I should of scrumpy (cider from the farm) which meant I held G's hand like a giggly squiffy teenager and had a splendid time. I suppose the good thing about having teenagers is that they weren't there and I had no responsibilities for the day so could indulge in embarrassing holding hands behaviour in public and G and I could listen to music in the car on the way home (he was driving I was cider woman) that was really loud and in our opinion good! So life is not too bad really. See I told you I am the glass half full type.........
edited to add - I am not taking the moral highground here. I am pretty revolting when I get really annoyed and I did swear at said teenager and still don't care that I did that. So there...... humph.......
have edited this post after a 24 hr cool off period and taken out details of argument - too much information and in hindsight far too vitriolic.. hindsight is handy on occasion I think.
I wish I was a teenager who could get away with emotional blackmail and then walk out of the door having said really really hurtful words with a nonchalance that seems practiced. I love my B so much which is why I guess harsh words and lost tempers have spoilt my day, I drove to a local beauty spot which thankfully on week days is a quiet retreat for locals. I sat in my car and I wept, not sobby tears just silently sat there with tears flowing salt stinging my skin. Not for myself but out of sheer frustration, as a parent all I really want is for my kids to be happy, healthy and if i am honest wealthy. Is that a bad thing?
In these situations G maddenly always remains cool and never ever loses his temper or in my opinion says what needs to be said, in order to avoid an argument. In all honesty I am still annoyed - I have asked G that when this tactic is played, that he refuses to have the conversation. It will blow over, I am a Leo and can't abide for a tiff to linger.
However, who am I really annoyed with, myself? B? or G? When the children were little we hoped that we are teaching them right from wrong, manners, etc... (and how to swear lol.....) Jokes aside, when they are adults so to speak it is much harder when they are deliberately nasty or rude. Is it my job now to let B know that there are consequences to treating people like shit... I think so. I have asked G again to try to look at the situation as if he were a third party looking in, in an an attempt for him to see the manipulative behaviour.
When my feelings are very very hurt I sleep, so I slept earlier and there was no supper cooked. I had no appetite and did not really like fish and chips so refused anything. Younger son was not in thankfully when stupid row occurred but knew I was upset. His sister had gone out without saying goodbye to me, although she did to G, which I always think is such a hurtful way of expressing oneself but understand it is teenage angst. He gave me some of his takeaway, by saying mum you should eat something but take it now before I change my mind!! He is 16.
I have felt sad all evening, out of proportion really to the row but sometimes the silliest of things make me sadder than they should. Perhaps I will delete this blog post tomorrow I am not sure. I suppose I am saying, no matter how much ones toddler is driving you mad they generally wake up in the morning after a bad day with a smile and kiss. Cherish that time, teenagers are not so forgiving....
Oh by the way in relation to the last post.... we went to the big garden show and I drank a little more than I should of scrumpy (cider from the farm) which meant I held G's hand like a giggly squiffy teenager and had a splendid time. I suppose the good thing about having teenagers is that they weren't there and I had no responsibilities for the day so could indulge in embarrassing holding hands behaviour in public and G and I could listen to music in the car on the way home (he was driving I was cider woman) that was really loud and in our opinion good! So life is not too bad really. See I told you I am the glass half full type.........
edited to add - I am not taking the moral highground here. I am pretty revolting when I get really annoyed and I did swear at said teenager and still don't care that I did that. So there...... humph.......
have edited this post after a 24 hr cool off period and taken out details of argument - too much information and in hindsight far too vitriolic.. hindsight is handy on occasion I think.
Saturday, 6 June 2009
Stuff
Ehlers Danlos Syndrome is one of the oldest known causes of bruising and bleeding and was first described by Hipprocrates in 400 BC. Then Tschernogobow from Moscow published his findings about the fragility of the skin associated with hypermobility of the large joints in 1892. Edvard Ehlers, in 1901, recognized the condition as a distinct entity. In 1908, Henri-Alexandre Danlos suggested that skin extensibility and fragility were the cardinal features of the syndrome. Edvard Ehlers (1863–1937), Danish dermatologist, and Henri Alexandre Danlos (1844–1912), French dermatologist, who separately reported it in 1901 and 1908.
There we are EDS may well be one of the oldest known etc..... but it is certainly something that most people know nothing about. Having EDS and trying to explain it is something I don't bother with very often. Probably because people's eyes glaze over shortly after the Ehlers Danlos bit... so I generally leave that until last and just say I was born without enough collagen in my muscles and it causes problems then tag on its called ehlers danlos, I normally leave out the syndrome bit as I often feel this part actually makes people think its a made up name... in actual fact I have hypermobility type formerly type III. A word of advice to anyone trying to explain the condition if you have it, just leave out the syndrome bit.
The thing is with invisible disability is it can be quite a lonely experience having it, my close family know obviously and friend's, apart from that not many. i am sure plenty in my small village think I am very lazy and feel sorry for my husband who works hard and long hours to support us. Sometimes I wish I could stand on the top of the house and scream 'What I have fucking hurts big time'.
this may sound bizarre but I actually dislocate my finger pushing the 'touch sensitive' button on the microwave and my thumb pushing the bigger button which opens the door. So for DLA purposes the microwaving meals question is a joke! (UK people will know what I am talking about).
So when you see me walking slowly to my car probably what hurts is everything, and very veryoccasionally nothing. My daughter has a beautiful smile which she uses as a mask, I know when she is out of the house and she is smiling as hard as she can she is in agony. If you are reading this and you have EDS too, I know that you know what I mean. EDS absolutely sucks.
It doesn't fill my head 24/7 but I do come here to vent my spleen, I am 44 and this morning my husband had to lift me from a laying down position in bed as I was in agony - he eased me carefully and lovingly up and spooned oramorph into me. I woke literally paralysed with pain, he went to work and three hours later I had managed to get up and get dressed I had to wait a full hour before i could move at all. not every day is like this and my life is pretty OK really but requiring morphine at 8:00 o clock in the morning is not good. He says its as though my body when asleep collapses in on itself and the muscles relax and don't hold my bones in.
It is Saturday so husband worked half a day... whilst he was away and I couldn't move, I thought about why he is still here and how he can find me attractive when his last memory of me this morning was spooning oramorph into me and smelling the sickly sweet smell of sweat caused by pain, my hair was damp and clinging, I wasn't scared I am used to it and so is he. The first time it happened i thought I was dying, funnily i didn't panic I just laid there and thought if this is dying I hope it hurries up as on pain scales its over the 10. Its stupid but lying in bed unable to move, doing visualisation techniques for relaxation and attempting stretches to help my broken body move is actually exhausting.
Because I had taken morphine in the morning by 5 o'clock this afternoon I was more than a tad grumpy and guess what completely took it out on other half. I feel bad now about this and want to apologise and cuddle him and say how much I love him but he is asleep and exhausted and it would be cruel to wake him up. Tomorrow morning he will wake early as usual and wait until its a good time to go see his mother whom he sees every Sunday and they walk the dogs.... she is 77 has recently had a heart by pass but nevertheless is more mobile than I. Don't get me wrong I am not an envious person by nature I never have been but it does make me wonder sometimes about the cruelty of EDS. I am not feeling sorry for myself honestly just thinking and writing. I wonder what it is that makes me a half glass full type of person ... I guess its my genes from my mother's side, no matter how bad things are she always always remains optimistic. My father is the opposite. So when I eventually do go to sleep this evening I remain hopeful that the paralysis thing won't happen in the morning. I suppose I should tell the doctor about it but i doubt he could do anything other than write it down and I have done that here.
So tomorrow there is a large garden show which i hope to attend as we do every year... husband said diplomatically tonight that there is a french market in town also, which no doubt he will be thinking may be a more achievable event. i have an open mind tonight.... so we shall see what tomorrow brings, French Market or Garden Show.... bollocks to EDS.
There we are EDS may well be one of the oldest known etc..... but it is certainly something that most people know nothing about. Having EDS and trying to explain it is something I don't bother with very often. Probably because people's eyes glaze over shortly after the Ehlers Danlos bit... so I generally leave that until last and just say I was born without enough collagen in my muscles and it causes problems then tag on its called ehlers danlos, I normally leave out the syndrome bit as I often feel this part actually makes people think its a made up name... in actual fact I have hypermobility type formerly type III. A word of advice to anyone trying to explain the condition if you have it, just leave out the syndrome bit.
The thing is with invisible disability is it can be quite a lonely experience having it, my close family know obviously and friend's, apart from that not many. i am sure plenty in my small village think I am very lazy and feel sorry for my husband who works hard and long hours to support us. Sometimes I wish I could stand on the top of the house and scream 'What I have fucking hurts big time'.
this may sound bizarre but I actually dislocate my finger pushing the 'touch sensitive' button on the microwave and my thumb pushing the bigger button which opens the door. So for DLA purposes the microwaving meals question is a joke! (UK people will know what I am talking about).
So when you see me walking slowly to my car probably what hurts is everything, and very veryoccasionally nothing. My daughter has a beautiful smile which she uses as a mask, I know when she is out of the house and she is smiling as hard as she can she is in agony. If you are reading this and you have EDS too, I know that you know what I mean. EDS absolutely sucks.
It doesn't fill my head 24/7 but I do come here to vent my spleen, I am 44 and this morning my husband had to lift me from a laying down position in bed as I was in agony - he eased me carefully and lovingly up and spooned oramorph into me. I woke literally paralysed with pain, he went to work and three hours later I had managed to get up and get dressed I had to wait a full hour before i could move at all. not every day is like this and my life is pretty OK really but requiring morphine at 8:00 o clock in the morning is not good. He says its as though my body when asleep collapses in on itself and the muscles relax and don't hold my bones in.
It is Saturday so husband worked half a day... whilst he was away and I couldn't move, I thought about why he is still here and how he can find me attractive when his last memory of me this morning was spooning oramorph into me and smelling the sickly sweet smell of sweat caused by pain, my hair was damp and clinging, I wasn't scared I am used to it and so is he. The first time it happened i thought I was dying, funnily i didn't panic I just laid there and thought if this is dying I hope it hurries up as on pain scales its over the 10. Its stupid but lying in bed unable to move, doing visualisation techniques for relaxation and attempting stretches to help my broken body move is actually exhausting.
Because I had taken morphine in the morning by 5 o'clock this afternoon I was more than a tad grumpy and guess what completely took it out on other half. I feel bad now about this and want to apologise and cuddle him and say how much I love him but he is asleep and exhausted and it would be cruel to wake him up. Tomorrow morning he will wake early as usual and wait until its a good time to go see his mother whom he sees every Sunday and they walk the dogs.... she is 77 has recently had a heart by pass but nevertheless is more mobile than I. Don't get me wrong I am not an envious person by nature I never have been but it does make me wonder sometimes about the cruelty of EDS. I am not feeling sorry for myself honestly just thinking and writing. I wonder what it is that makes me a half glass full type of person ... I guess its my genes from my mother's side, no matter how bad things are she always always remains optimistic. My father is the opposite. So when I eventually do go to sleep this evening I remain hopeful that the paralysis thing won't happen in the morning. I suppose I should tell the doctor about it but i doubt he could do anything other than write it down and I have done that here.
So tomorrow there is a large garden show which i hope to attend as we do every year... husband said diplomatically tonight that there is a french market in town also, which no doubt he will be thinking may be a more achievable event. i have an open mind tonight.... so we shall see what tomorrow brings, French Market or Garden Show.... bollocks to EDS.
Wednesday, 3 June 2009
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