This is my new knee brace, sexy oh so sexy. It is not a picture of my leg by the way. My brace is blue. It is interesting that when wearing this, people try not to stare. The positive is that they give me a wide birth which is helpful as I fall over if people don't make way for me.
Finding appropriate clothes to wear with it is challenging. It was expensive in the many hundreds of pounds. I feel I should accessorise appropriately. The NHS in this instance did me proud. Skirts would be best to hide it. But its getting colder and I need covering. Because I am small, I cannot wear it under jeans as they would fall down (the jeans would need to be bigger) and over jeans is not a good look. Because of my thin skin, leggings work well but the bionic woman look is so 70's.
Because it holds my knee in place it seems my ankle has decided to join in the game. Wobbling away. But one thing at a time. GP forgot about other knee so for the moment I have one knee braced. I am not keen I must be honest and it will take some getting used to. For the moment though my knee is happy to have a friend who does the job a knee should do.
Next on the list is OT assessment. I am hoping there is a long waiting list as the house, particularly upstairs is not for public viewing. She is to assess for a stair lift and lightweight electric wheelchair. We shall see what happens.
With the current budget cuts I expect she will agree that I need all of the above and more but due to constraints she will not be able to provide, the wheelchair in particular. It has taken me a very long time to come to terms with all of this. I am still somewhat in denial.
I like denial.
On the crotchet front, getting absolutely nowhere with it! However, looking on the bright side, I have plenty of time to get the hang of it!
I am watching a film with subtitles. I have always loved as long as I can remember watching films with them. Perhaps its because I miss so much because of mild hearing impairment. I also become lost within them, entranced by languages I can't understand. The film is complicated, fascinating. http://en.wikipedia.org/wiki/All_About_My_Mother For some, shocking. Its unusual for me to watch a film throughout. This one I would like to watch again.
My son has passed his driving test. I have been through this with my daughter. I must not panic each time he goes out. He will be fine. I keep repeating this to myself over and over. He looks at me each time he goes out as I say 'I love you' and helps to ease my rising fear by smiling with his beautiful blue eyes and says 'I love you too, mum'. I am proud of myself that I am learning to let go. When in reality I want him back in his cot, sleeping soundly, safe secure. OH has agreed to another kitten, he sees me panic and I see him thinking.
Yes another kitten will definitely help. I can spend time thinking of a name. Distraction.
* mini note: On denial, I actually had a home OT assessment ten years ago. Wheelchair electric, stair lift, bath thingy were approved. I have been in denial for a very long time. As none of the suggested 'stuff' was allowed in my house thanks. Oh yes.. denial...
... snippets of my day, about living well with a hidden disability known as Ehlers Danlos. Here I can be me, bent and broken in body but never in spirit.
Friday, 24 September 2010
Friday, 17 September 2010
Moving swiftly on...
*edit - i read through this post and am aware I have not enough o's on some of my too's, my grammar is crap and there is whole that should read hole. Plus the rest but if I look anymore bearing in mind I can't find them again I will lose my bottle and not hit publish so apologies to those who are irritated by poorly written, misspelled, grammatically incorrect glogs you are probably in the wrong place.
NB - Please do not mention my dog.
I am writing another post so quickly after the last in the hope that my blog has not become 'a heart sink patient'. You know the type, GP looks at patient list for the day and sighs heavily. Oh God. Its her again, the moaner.
I must be honest its hard sometimes not to just sit here and say -
My Life is crap because ................
Its not actually total crap but it would be incredibly easy for my blog to become a forum for all my woes. Well not all of them because there are actually more than I write which is why I am not writing very many at the moment. I could tell the truth couldn't I and be brave but that means I may as well hit the private button get it all out and make it a personal diary. Believe me I often think about it. Then I could read it back when I am very old and laugh at myself. The thing about blogging is I have realised, in part because it is in the public domain, I often feel obliged to say I am fine and this witty something another happened today or provide an informed post about EDS and then write some witty little thing about my family. Throw in a few politically correct disability related snippets and consider the job done.
Well mine isn't that much in the public domain because I haven't made all the settings so that it comes up in google searches. I mean the fame would probably just go to my head. I would probably have to work out how to use another email address and all that jazz. Most visitors seem to have stopped by because I have commented on their blog. I don't mind at all about visitor stats etc. because I don't have the gadget that does that. I can't log ip addresses because I don't appear to have that facility, so if I ever get spam then I'll have to just be darned rude and hope they go away. I sort of have blog envy when people mention spammers as it seems to me whilst unpleasant it means one's blog is popular and therefore successful. My dashboard thingy suggests I check for spam occasionally in its spam catcher but it is always empty.
Kim over at frogpondsrock (see blog roll) has been having a little worm being an irritating and thoughtless commenter and I like it that decent bloggers rush to the aid of someone who is having problems with them. Its a reminder that the majority of the blogging world is full of decent people.
Anyway back on topic - others like Rusty Hoe please see this bobisdysautonomia.blogspot.com - Where am I going... write brilliantly about disabling conditions. I open my blog go to new post and immediately my vocabulary shrinks, my wit leaves the building and I seem to write in far too plain English. So I ask myself why? other people's worlds have shrunk through illness and disability but they retain the ability to write well. I tried telling myself this afternoon it is because I don't get out enough, I am not intellectually stimulated. I am bored which probably equates to boring.
If truth were to be told, I could reveal all and let it all out but that would be cruel? So here is a disclaimer I am about to be brave and hint at a few home truths. When I hinted at my mid-life crisis I gave a synopsis. I didn't say, I think my husband has had enough. Which is what I am thinking. He is loyal and all that and not a wanderer but I sense despite the fact I big him up here for his unquestioned support. In truth there is something missing these days. Or is that normal when one has been married for 21 years. I am a Leo and although I don't hold much stock in all that, I do use it as an excuse for certain of my behaviours. I am prone to blurting out what is on my mind of late to see if I get a reaction.
ie:- God it must be boring married to me. Wouldn't you prefer a younger model. Shall we do something exciting this weekend or shall I just sleep all day, so that you can read the paper and drink lager without interruption. The stuff that is wrong in our marriage could probably be changed by a shift of priorities on both parts. I think he feels resentful that he works so hard and comes home to a very untidy house to a boring, cripple of a wife who has a tendency to talk crap all evening. He answers mmmm a lot in response plenty of late and last night I tried an experiment. I gave up making conversation, go on guess, OK you probably have already - absolutely no conversation whatsoever.
Sometimes without meaning too I am hypersensitive to criticism (a failing of mine) and I overreact to mild stuff. This leads to an argument, when one has been married for as long as us, even rows can become predictable. Generally over the same things.
Just so you get it. I am not moaning yet by the way I am revealing just a little bit more of myself than normal because not doing so means my blog is becoming very plain. So I am not looking for sympathy just being a little brave on the this is my world thing.
There are lots of articles in magazines (if you are a regular reader you will know I get given them, I come from an era or from parents who would make me feel so guilty if I bought a magazine or frittered any money that because we are not loaded I just can't waste my money on them). anyway lots of articles with zany titles - how to get the pzasss back in your marriage, 10 things you need to know about how to keep a marriage alive...
I like to think I am intelligent and articulate in an argument. I try hard not to just slate the other party for the sake of it. My OH on the other hand goes for the jugular - as soon as he feels he's not being agreed with and there is the slightest hint of a raised voice, he tells me I am stupid, (now I know I am not but it never fails to hurt my feelings) he can just be plain nasty. We argue less these days, about ten years ago we went through a bad patch and we did the whole lets split up thing which lasted about a week and since then arguing happens when I deign to disagree. You see my husband you know the other half that mostly in this blog I refer to as, he that is supportive and perfect isn't really. Who is. Its just I have felt that by saying he isn't is airing my dirty laundry in public. Well to be frank it is isn't it?
What has made me change my mind. Its been bubbling away for a while now. When I say on this blog I think I am becoming boring, I don't say why. When I hint at my mid life crisis, I don't say why. Now suggesting marriage counselling wouldn't work. He is the type of bloke that would move out throw it all away rather than do that. In his mind, marriage counselling is for those to chicken to divorce. The truth is we have fallen into the trap of been married so long we take each other for granted. We rarely socialise. He reads the paper whilst drinking a Stella (s) every evening and at weekends we have to be home by early afternoon for this ritual to carry on. A lot of the time I don't mind. Having EDS means I get tired a lot so having an excuse to do bugger all means I don't have to say - I'm sorry I can't do such an such because of this stupid condition and I'll sleep, watch TV, pretend to knit and currently pretend to teach myself to crotchet.
However, because I am middle aged now my life has become so predictable I feel I could scream and scream and scream and scream. I see 'us' disappearing into a black whole from which I am not sure we can recover. In my daydreams I dream about popping out one day and not coming back for six weeks or so to see if he would miss me. Announce that I need to go find myself (except I have no money) and him understanding.
I know I have a habit of blaming him when the chips are down and I hate myself for this. Expecting someone else to be responsible for your personal happiness is childish. So I think to myself, right what I need to do is make my life more interesting. Perhaps an evening class or day? Then I talk myself out of that. My condition makes making plans quite hard. From previous experience, setting oneself up for a fall is not a good thing for self esteem. This probably sounds like a whole load of feeble excuses but its actually true.
My mother rings with handy hints - oooh I saw this group where everyone talks about literary stuff and such and bla bla - she only wants to help. By way of explanation, my mother was a Headteacher, she held down a full time job, went to at least two evening classes a week, was a supportive wife and mother, did her MA? in comparative education aged 45 travelling to Russia etc, she entertained and gardened and had/has so much f'ing energy it used to wear me out just watching her. Still does in fact. Oh how I wish I hadn't let her know as I said here the other day I was feeling a little low.
So by way of climbing out of my comfort zone, I have no doubt opened a can of worms. But as is always pointed out to me by bloggy friends, there is no obligation to read. You never know, I may soon become like the lovely nechtan who is also in my blog roll who has an amazing talent for spilling out the contents of his intelligent mind with an honesty that I can only admire.
Me I'm still me sitting here blogging only really being brave enough to hint at my life. Good job too as there is a whole lot more going on than even I know in my head. You see to open it up and really go there may bring up answers I don't like. So instead for the moment the next few posts are probably going to be mundane. Just how I like it?
NB - Please do not mention my dog.
I am writing another post so quickly after the last in the hope that my blog has not become 'a heart sink patient'. You know the type, GP looks at patient list for the day and sighs heavily. Oh God. Its her again, the moaner.
I must be honest its hard sometimes not to just sit here and say -
My Life is crap because ................
Its not actually total crap but it would be incredibly easy for my blog to become a forum for all my woes. Well not all of them because there are actually more than I write which is why I am not writing very many at the moment. I could tell the truth couldn't I and be brave but that means I may as well hit the private button get it all out and make it a personal diary. Believe me I often think about it. Then I could read it back when I am very old and laugh at myself. The thing about blogging is I have realised, in part because it is in the public domain, I often feel obliged to say I am fine and this witty something another happened today or provide an informed post about EDS and then write some witty little thing about my family. Throw in a few politically correct disability related snippets and consider the job done.
Well mine isn't that much in the public domain because I haven't made all the settings so that it comes up in google searches. I mean the fame would probably just go to my head. I would probably have to work out how to use another email address and all that jazz. Most visitors seem to have stopped by because I have commented on their blog. I don't mind at all about visitor stats etc. because I don't have the gadget that does that. I can't log ip addresses because I don't appear to have that facility, so if I ever get spam then I'll have to just be darned rude and hope they go away. I sort of have blog envy when people mention spammers as it seems to me whilst unpleasant it means one's blog is popular and therefore successful. My dashboard thingy suggests I check for spam occasionally in its spam catcher but it is always empty.
Kim over at frogpondsrock (see blog roll) has been having a little worm being an irritating and thoughtless commenter and I like it that decent bloggers rush to the aid of someone who is having problems with them. Its a reminder that the majority of the blogging world is full of decent people.
Anyway back on topic - others like Rusty Hoe please see this bobisdysautonomia.blogspot.com - Where am I going... write brilliantly about disabling conditions. I open my blog go to new post and immediately my vocabulary shrinks, my wit leaves the building and I seem to write in far too plain English. So I ask myself why? other people's worlds have shrunk through illness and disability but they retain the ability to write well. I tried telling myself this afternoon it is because I don't get out enough, I am not intellectually stimulated. I am bored which probably equates to boring.
If truth were to be told, I could reveal all and let it all out but that would be cruel? So here is a disclaimer I am about to be brave and hint at a few home truths. When I hinted at my mid-life crisis I gave a synopsis. I didn't say, I think my husband has had enough. Which is what I am thinking. He is loyal and all that and not a wanderer but I sense despite the fact I big him up here for his unquestioned support. In truth there is something missing these days. Or is that normal when one has been married for 21 years. I am a Leo and although I don't hold much stock in all that, I do use it as an excuse for certain of my behaviours. I am prone to blurting out what is on my mind of late to see if I get a reaction.
ie:- God it must be boring married to me. Wouldn't you prefer a younger model. Shall we do something exciting this weekend or shall I just sleep all day, so that you can read the paper and drink lager without interruption. The stuff that is wrong in our marriage could probably be changed by a shift of priorities on both parts. I think he feels resentful that he works so hard and comes home to a very untidy house to a boring, cripple of a wife who has a tendency to talk crap all evening. He answers mmmm a lot in response plenty of late and last night I tried an experiment. I gave up making conversation, go on guess, OK you probably have already - absolutely no conversation whatsoever.
Sometimes without meaning too I am hypersensitive to criticism (a failing of mine) and I overreact to mild stuff. This leads to an argument, when one has been married for as long as us, even rows can become predictable. Generally over the same things.
Just so you get it. I am not moaning yet by the way I am revealing just a little bit more of myself than normal because not doing so means my blog is becoming very plain. So I am not looking for sympathy just being a little brave on the this is my world thing.
There are lots of articles in magazines (if you are a regular reader you will know I get given them, I come from an era or from parents who would make me feel so guilty if I bought a magazine or frittered any money that because we are not loaded I just can't waste my money on them). anyway lots of articles with zany titles - how to get the pzasss back in your marriage, 10 things you need to know about how to keep a marriage alive...
I like to think I am intelligent and articulate in an argument. I try hard not to just slate the other party for the sake of it. My OH on the other hand goes for the jugular - as soon as he feels he's not being agreed with and there is the slightest hint of a raised voice, he tells me I am stupid, (now I know I am not but it never fails to hurt my feelings) he can just be plain nasty. We argue less these days, about ten years ago we went through a bad patch and we did the whole lets split up thing which lasted about a week and since then arguing happens when I deign to disagree. You see my husband you know the other half that mostly in this blog I refer to as, he that is supportive and perfect isn't really. Who is. Its just I have felt that by saying he isn't is airing my dirty laundry in public. Well to be frank it is isn't it?
What has made me change my mind. Its been bubbling away for a while now. When I say on this blog I think I am becoming boring, I don't say why. When I hint at my mid life crisis, I don't say why. Now suggesting marriage counselling wouldn't work. He is the type of bloke that would move out throw it all away rather than do that. In his mind, marriage counselling is for those to chicken to divorce. The truth is we have fallen into the trap of been married so long we take each other for granted. We rarely socialise. He reads the paper whilst drinking a Stella (s) every evening and at weekends we have to be home by early afternoon for this ritual to carry on. A lot of the time I don't mind. Having EDS means I get tired a lot so having an excuse to do bugger all means I don't have to say - I'm sorry I can't do such an such because of this stupid condition and I'll sleep, watch TV, pretend to knit and currently pretend to teach myself to crotchet.
However, because I am middle aged now my life has become so predictable I feel I could scream and scream and scream and scream. I see 'us' disappearing into a black whole from which I am not sure we can recover. In my daydreams I dream about popping out one day and not coming back for six weeks or so to see if he would miss me. Announce that I need to go find myself (except I have no money) and him understanding.
I know I have a habit of blaming him when the chips are down and I hate myself for this. Expecting someone else to be responsible for your personal happiness is childish. So I think to myself, right what I need to do is make my life more interesting. Perhaps an evening class or day? Then I talk myself out of that. My condition makes making plans quite hard. From previous experience, setting oneself up for a fall is not a good thing for self esteem. This probably sounds like a whole load of feeble excuses but its actually true.
My mother rings with handy hints - oooh I saw this group where everyone talks about literary stuff and such and bla bla - she only wants to help. By way of explanation, my mother was a Headteacher, she held down a full time job, went to at least two evening classes a week, was a supportive wife and mother, did her MA? in comparative education aged 45 travelling to Russia etc, she entertained and gardened and had/has so much f'ing energy it used to wear me out just watching her. Still does in fact. Oh how I wish I hadn't let her know as I said here the other day I was feeling a little low.
So by way of climbing out of my comfort zone, I have no doubt opened a can of worms. But as is always pointed out to me by bloggy friends, there is no obligation to read. You never know, I may soon become like the lovely nechtan who is also in my blog roll who has an amazing talent for spilling out the contents of his intelligent mind with an honesty that I can only admire.
Me I'm still me sitting here blogging only really being brave enough to hint at my life. Good job too as there is a whole lot more going on than even I know in my head. You see to open it up and really go there may bring up answers I don't like. So instead for the moment the next few posts are probably going to be mundane. Just how I like it?
Thursday, 16 September 2010
Sick Dog......
What can I say our beautiful family dog is very very sick.
No Posts because we are all crying.
He lost the sight in one eye overnight.
Glaucoma
Pressure raised in other eye.
I am devasted.
No Posts because we are all crying.
He lost the sight in one eye overnight.
Glaucoma
Pressure raised in other eye.
I am devasted.
Sunday, 12 September 2010
Its all about me....
My mind is full to overflowing with 'stuff'.
My body wracked with pain.
On order is a new knee brace, the hospital ordering in. Being short with chicken legs requires a wait. Old knee brace in the bin. A shiny new hinged one soon to arrive. The bionic woman, that's me. I am not sure why, when both knees should be looked at why they can only do one at a time but I keep very quiet in appointments lately. To save my sanity.
Truthfully, whenever I feel 'this way', my thoughts turn to moving. Perhaps if we move, the house would be tidy, I wouldn't hurt, money worries would disappear. bla bla. We haven't moved for 17 years. So perhaps its time I took action. I am not so naive that all the crap would go away but perhaps it is time for a change.
As my youngest turned 18, I have had a mini mid life crisis. Why am I here? What have I ever achieved in my life? You know the type of stuff. 46, no career. Disability stares me in the face with no answers.
So again I look to the small things for solace. Little by little I put my brain back together to help ease my troubled mind.
My body wracked with pain.
On order is a new knee brace, the hospital ordering in. Being short with chicken legs requires a wait. Old knee brace in the bin. A shiny new hinged one soon to arrive. The bionic woman, that's me. I am not sure why, when both knees should be looked at why they can only do one at a time but I keep very quiet in appointments lately. To save my sanity.
Truthfully, whenever I feel 'this way', my thoughts turn to moving. Perhaps if we move, the house would be tidy, I wouldn't hurt, money worries would disappear. bla bla. We haven't moved for 17 years. So perhaps its time I took action. I am not so naive that all the crap would go away but perhaps it is time for a change.
As my youngest turned 18, I have had a mini mid life crisis. Why am I here? What have I ever achieved in my life? You know the type of stuff. 46, no career. Disability stares me in the face with no answers.
So again I look to the small things for solace. Little by little I put my brain back together to help ease my troubled mind.
Sunday, 5 September 2010
Should it have to take an earthquake...
I woke up this morning and everything in my world was good. We went for the most outstanding lunch to add to the celebrations for son's 18th Birthday. He had already done the clubbing bit... We all smiled. We returned home and I slept for a little while. I woke and had a boiled egg with soldier's yum.... I watched a little TV and thought I would catch up on my emails.
A good friend emigrated to New Zealand a while back. I could not believe what I read in her mail. Which was basically a personal account of this....
http://www.bbc.co.uk/news/world
Fortunately, she explained, her house wobbles, apart from the fact that the interior of the house looked as though they had been burgled, had no electricity, no water etc., none of the family thankfully had received personal injury. She was nervous of aftershocks.
The email reminded me that I miss this friend. One reason would be is that she is always thoughtful towards others. The moment she realised that here in the UK we would be receiving breaking news of the earthquake she was mindful that we would all want to know that she and the family were safe.
Sometimes I am reminded that whilst my life goes on in its own small way. All over the world families and their friend's are affected by personal tragedy, natural disasters, war, manmade disasters, and the rest.
Today I was reminded that all over the world families and their friend's are lucky as well. Lucky to be alive.
It shouldn't take an earthquake to remind me that I too am lucky.
A good friend emigrated to New Zealand a while back. I could not believe what I read in her mail. Which was basically a personal account of this....
http://www.bbc.co.uk/news/world
Fortunately, she explained, her house wobbles, apart from the fact that the interior of the house looked as though they had been burgled, had no electricity, no water etc., none of the family thankfully had received personal injury. She was nervous of aftershocks.
The email reminded me that I miss this friend. One reason would be is that she is always thoughtful towards others. The moment she realised that here in the UK we would be receiving breaking news of the earthquake she was mindful that we would all want to know that she and the family were safe.
Sometimes I am reminded that whilst my life goes on in its own small way. All over the world families and their friend's are affected by personal tragedy, natural disasters, war, manmade disasters, and the rest.
Today I was reminded that all over the world families and their friend's are lucky as well. Lucky to be alive.
It shouldn't take an earthquake to remind me that I too am lucky.
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