A small parcel arrived from America on Christmas Eve from a very special person.
Four years ago hubby donated his bone marrow to an unknown person who would otherwise have died without it.
He joined the register to donate bone marrow with Anthony Nolan many years ago when he saw an advertisement on tv to try and find a donor for Anthony Nolan himself. Our own son was, at that time, of a similar age to Anthony and it brings it home to you that you are lucky that your own children are healthy when you hear of such an appeal.
The routine of donating bone marrow was not difficult, a little like giving blood, only for a longer time, and he was looked after well. He had been on the register for many many years when he was called up to donate his bone marrow. You start to think "will I ever be a match for anyone" and then the call comes.
We did not have much idea to whom his bone marrow had gone, we had christmas cards and letters from the recipient, but all we knew was that they were a woman with a teenage son and a daughter in her early twenties. We had no idea which country they were from or what they looked like. Until about a year ago.
Two years after a donation, the recipient has the right to ask to contact their donor. You cannot have contact the other way around, it has to come from the recipient of the bone marrow, so when a letter arrived on the doorstep to say that the person whose life he saved wanted contact we had to make the decision as to whether or not to allow it to take place. After speaking to our children, and one another, we decided to allow contact and sent in the form of agreement.
One memorable day we received an email from Michelle in America, the lady whose life Graham had saved. She had been through a very bad time, she was so ill at one point that the family were gathered around her hospital bed to say goodbye. She was in a coma for a long time, and had to learn how to walk again. Without Grahams donation she told us, she would definately have died. Her husband would have been without his wife. Her children would have been without a mother. She told us how grateful she is to be alive, how wonderful it is to be able to say thankyou for the gift of life.
We are now friends on Facebook, we email each other and we have spoken on the phone. We hope to meet next year when they travel to visit friends in Ireland and we are hoping to go and meet Michelle and her husband. Without my husband Michelle would not be alive, and without my husband I would not be alive. You see I have also had cancer, Michelle had cancer of the blood, I had breast cancer. I had thrown away the letter to go for a routine mammogram but my husband, Graham, took the letter out of the bin and made me go and have that routine mammogram. I thought nothing was wrong, but I was wrong. It turned out I had breast cancer. If he had not rescued the letter, and made me attend the test, I may not be around to tell you this tale!
He says he donated his bone marrow to Michelle to "give something back" for my life being saved. He would have donated his bone marrow anyway, because that is the sort of person he is.
He is very proud to have saved a life, I am very proud of him. It is a wonderful thing to say you have saved the life of another person, a stranger whose paths otherwise would never have crossed your own. So if you can, save a life today. Join the bone marrow register. Thankyou.
Sunday, 30 December 2012
Friday, 14 December 2012
Christmas way back when!
I was born in 1955 and grew up with my parents and two sisters, both of whom are older than me. One is 7 years older, the other 6 years older.
As it was Dads birthday on the 12th December he refused to start Christmas until after his birthday had passed and even today I keep up the same tradition, our christmas tree does not go up until the weekend after my Dads birthday has gone by.
Dad would announce that he was going out to look for holly and ask for volunteers to go and help. At the end of our street was a small wooded area where you could often find a little bit of holly growing through the trees so we would go armed with scissors and a bit of newspaper to wrap it. He would place it on the mantlepiece and on the tops of pictures, anywhere it would sit really. I remember having a real tree as well as artificial trees, not at the same time mind you, I think we probably had real trees when I was really small, progressing on to an artificial tree as the shops started to sell them. I love the smell of a real pine Christmas tree, there is nothing which says Christmas better! It was never quite the same somehow when we started to have an artificial tree. The box of glass baubles would be brought out, very delicate these were and we would have to be extremely careful not to drop them or they would shatter and sharp thin shards would be everywhere. Dad had to test the tree lights before he put them on to the tree and invariably each time they would not come on, meaning he then had to test each tiny bulb in turn to see which one was not working. I used to sit, with bated breath, just in case they did not work at all, I hardly dared to breath, just in case they did not start to twinkle. When the tree was dressed, we would all have a hand in putting the baubles around the branches, once the lights were on, then the tinsel before the big switch on when Dad would turn the main light out in the room so we could view the tree with its lights twinkling in all its glory. Some years we would have the proper tree chocolates to hang on our tree, wrapped in coloured silver paper, often in the shape of santa, bells, maybe a star. Other years we would be set to work with wrapping paper, small bars of chocolate, selotape and cotton and we would be occupied wrapping the sweets up before hanging them on the tree.
Mom would get the paper chains out, not that they were chains at the beginning, they were merely strips of coloured paper with a gummed strip at one end which we would turn into a circle and stick together, before putting the next piece of paper through and making another circle, forming the chain. Once they were long enough they were handed to Dad who would fix them somehow onto the ceiling at the corner of the room, they would then be draped, fixed in the centre by the light fitting and then fixed to the opposite corner. The whole thing would then be done again in the other corners until the chains hung in a cross over the ceiling. Out would come balloons, which all helped to blow up, though Mom would have to tie them, I was scared they would burst in my hands and I hated nothing more than when a balloon burst, frightening the life out of me with the `bang`. The balloons would then be hung up around the room along with various other christmas decorations, large bells made of paper unfolded carefully and fixed with a little metal clip. I can also remember Dad fixing up crepe paper streamers which he would twist as he fed them out from the corner of the ceiling before he taped them to the centre and then on to the opposite corner. Whether the crepe paper streamers came first, or the paper chains I am not sure. I am pretty certain though that one superseded the other!
One year Christmas designs were sprayed on to the windows of the lounge using a cardboard template and a can of`snow spray`. We also had `snow` sprayed into the corners of the windows making it look like a winter scene from outside. I don`t think that happened again very often, as it proved very difficult to remove after the festivities!!
Extended family would arrive for the Christmas get togethers, Grandads, Aunts, Uncles, Cousins. One memorable year I was in bed with German measles, I would be about 3 at the time, I could hear everybody having a good time downstairs but I did not want to go down as I thought they would all laugh at my spots. I doubt I felt very well either come to that! Mom tried to persuade me but I was having none of it, until my cousin arrived in my room and asked was I coming down to play. I remember playing with my new skittles in the hallway and asking if I could have a drink of the funny water with the bubbles, so I suppose I must have gone to join in after all. That was my first taste of lemonade, I did not like it much! The bubbles went up my nose and I much preferred milk!
We did not have loads in the way of presents, not like today with computer games, televisions and all kinds of expensive electrical equipment available. For our main present we would get something like a board game, I was thrilled the year I got "Mouse Trap" which we would play with the family after dinner in the afternoon while we munched sweets and nuts. We would also get a book, usually an annual, The Beano, Dandy or Bunty perhaps, and always a selection box which often had a game on the back which you cut out after you finished the contents.
Dad always had to have certain sweets for Christmas, there would be Roses chocolates or Quality Street, liquorice allsorts, fruit jellies in a box, and he liked to have a small round box with jelly slices of oranges and lemons which it seemed only he liked! Mom liked sugared almonds and we would often have a box of turkish delight, dusted with powder which I think must have been icing sugar. My Aunty liked those! I quite liked them too, though they stuck to your teeth!
Christmas was a family time when I was a child, as it should be, and we love nothing more than having the whole family around us today.
Wishing you all a very happy Christmas time, and all the very best for the New Year. xxx
As it was Dads birthday on the 12th December he refused to start Christmas until after his birthday had passed and even today I keep up the same tradition, our christmas tree does not go up until the weekend after my Dads birthday has gone by.
Dad would announce that he was going out to look for holly and ask for volunteers to go and help. At the end of our street was a small wooded area where you could often find a little bit of holly growing through the trees so we would go armed with scissors and a bit of newspaper to wrap it. He would place it on the mantlepiece and on the tops of pictures, anywhere it would sit really. I remember having a real tree as well as artificial trees, not at the same time mind you, I think we probably had real trees when I was really small, progressing on to an artificial tree as the shops started to sell them. I love the smell of a real pine Christmas tree, there is nothing which says Christmas better! It was never quite the same somehow when we started to have an artificial tree. The box of glass baubles would be brought out, very delicate these were and we would have to be extremely careful not to drop them or they would shatter and sharp thin shards would be everywhere. Dad had to test the tree lights before he put them on to the tree and invariably each time they would not come on, meaning he then had to test each tiny bulb in turn to see which one was not working. I used to sit, with bated breath, just in case they did not work at all, I hardly dared to breath, just in case they did not start to twinkle. When the tree was dressed, we would all have a hand in putting the baubles around the branches, once the lights were on, then the tinsel before the big switch on when Dad would turn the main light out in the room so we could view the tree with its lights twinkling in all its glory. Some years we would have the proper tree chocolates to hang on our tree, wrapped in coloured silver paper, often in the shape of santa, bells, maybe a star. Other years we would be set to work with wrapping paper, small bars of chocolate, selotape and cotton and we would be occupied wrapping the sweets up before hanging them on the tree.
Mom would get the paper chains out, not that they were chains at the beginning, they were merely strips of coloured paper with a gummed strip at one end which we would turn into a circle and stick together, before putting the next piece of paper through and making another circle, forming the chain. Once they were long enough they were handed to Dad who would fix them somehow onto the ceiling at the corner of the room, they would then be draped, fixed in the centre by the light fitting and then fixed to the opposite corner. The whole thing would then be done again in the other corners until the chains hung in a cross over the ceiling. Out would come balloons, which all helped to blow up, though Mom would have to tie them, I was scared they would burst in my hands and I hated nothing more than when a balloon burst, frightening the life out of me with the `bang`. The balloons would then be hung up around the room along with various other christmas decorations, large bells made of paper unfolded carefully and fixed with a little metal clip. I can also remember Dad fixing up crepe paper streamers which he would twist as he fed them out from the corner of the ceiling before he taped them to the centre and then on to the opposite corner. Whether the crepe paper streamers came first, or the paper chains I am not sure. I am pretty certain though that one superseded the other!
One year Christmas designs were sprayed on to the windows of the lounge using a cardboard template and a can of`snow spray`. We also had `snow` sprayed into the corners of the windows making it look like a winter scene from outside. I don`t think that happened again very often, as it proved very difficult to remove after the festivities!!
Extended family would arrive for the Christmas get togethers, Grandads, Aunts, Uncles, Cousins. One memorable year I was in bed with German measles, I would be about 3 at the time, I could hear everybody having a good time downstairs but I did not want to go down as I thought they would all laugh at my spots. I doubt I felt very well either come to that! Mom tried to persuade me but I was having none of it, until my cousin arrived in my room and asked was I coming down to play. I remember playing with my new skittles in the hallway and asking if I could have a drink of the funny water with the bubbles, so I suppose I must have gone to join in after all. That was my first taste of lemonade, I did not like it much! The bubbles went up my nose and I much preferred milk!
We did not have loads in the way of presents, not like today with computer games, televisions and all kinds of expensive electrical equipment available. For our main present we would get something like a board game, I was thrilled the year I got "Mouse Trap" which we would play with the family after dinner in the afternoon while we munched sweets and nuts. We would also get a book, usually an annual, The Beano, Dandy or Bunty perhaps, and always a selection box which often had a game on the back which you cut out after you finished the contents.
Dad always had to have certain sweets for Christmas, there would be Roses chocolates or Quality Street, liquorice allsorts, fruit jellies in a box, and he liked to have a small round box with jelly slices of oranges and lemons which it seemed only he liked! Mom liked sugared almonds and we would often have a box of turkish delight, dusted with powder which I think must have been icing sugar. My Aunty liked those! I quite liked them too, though they stuck to your teeth!
Christmas was a family time when I was a child, as it should be, and we love nothing more than having the whole family around us today.
Wishing you all a very happy Christmas time, and all the very best for the New Year. xxx
Wednesday, 12 December 2012
POTATO POTATO
You would think, by now, I would know how to cook potatoes! I thought I would cheat today and while the mince, carrots and onions were cooking in one pot, ready for me to make cottage pie for tea, I put the pan of potatoes on the same oven shelf to cook rather than on the hob to save fuel! When I got the meat out to give it a stir I checked the potatoes and they were soft, until I drained them off and tried to mash the stupid things when I discovered that some of the ones at the bottom of the pan are still, well shall we say a little crispy! I have mashed them up a bit, so at the moment they are crushed potatoes, and have put them back into the oven on a slower heat in the hope that they might soften up a bit. After all who wants hard bits in their mash? I could not put them back into boiling water as I had already added some olive oil spread so I have now sprinkled a bit of olive oil over them too and am hoping for the best! I have cooked them this way before and doing them in the oven seems to give them a nicer flavour, but it is always a good idea to make sure they are cooked properly before you try to mash them up ready for topping the meat. Oh well, hopefully they will soften and I shall be able to complete my meal soon.
I have been very good today, I had a brunch rather than a breakfast and lunch, an omlete sandwich. Yes sounds rather strange but I like it. I wanted something tasty, warm and filling. As I am on a diet, surely one meal rather than two is preferable?!!?
I have also sorted out my filing cabinet, well sort of, I have filed away the post which has been sat on the top for several months, quite a pile by this time, and half of which has been torn in half and thrown in the bin. Which begs the question, why was it there in the first place?! I have told myself that this time (though I said this last time) I shall file post away (bills, bank statements etc.) as and when it comes. Thats what I have told myself, though I bet the top of my filing cabinet will be in the same state again in a few weeks time and my resolution will have gone out of the window. It would be much easier, but for some reason I hate filing and sorting out paperwork! I am actually a secretary by trade so I should be ok with doing this sort of thing, but it is a hated job for me!
Hubby has just arrived so I am going to see how my potato disaster has come out. Bye for now!
I have been very good today, I had a brunch rather than a breakfast and lunch, an omlete sandwich. Yes sounds rather strange but I like it. I wanted something tasty, warm and filling. As I am on a diet, surely one meal rather than two is preferable?!!?
I have also sorted out my filing cabinet, well sort of, I have filed away the post which has been sat on the top for several months, quite a pile by this time, and half of which has been torn in half and thrown in the bin. Which begs the question, why was it there in the first place?! I have told myself that this time (though I said this last time) I shall file post away (bills, bank statements etc.) as and when it comes. Thats what I have told myself, though I bet the top of my filing cabinet will be in the same state again in a few weeks time and my resolution will have gone out of the window. It would be much easier, but for some reason I hate filing and sorting out paperwork! I am actually a secretary by trade so I should be ok with doing this sort of thing, but it is a hated job for me!
Hubby has just arrived so I am going to see how my potato disaster has come out. Bye for now!
Monday, 10 December 2012
Life long friends
I`m very lucky. Today I am going out for a pre Christmas lunch with my friend Elaine, we have been friends for 46 years since we met at school at the age of 11 years old. We have both been through a lot, and we have kept in touch for all of these years, friends for life. We both started Grammar School on the same day and were put into Mr Bryce`s class together. He had very strange eyes, they did not always look where he wanted them to, so that he could appear to be looking at one person when really he was actually looking at the person sitting next to them or behind them! Kids in our class used to wonder why he was telling them off before they realised he was actually shouting at the girl sitting to your right! Anyway she will be here soon so I had best go and get ready for my lunch date.
Wednesday, 14 November 2012
My mobility scooter.
I have got myself some wheels. No not a car, not even a cycle, I have had a mobility scooter. I fought against it for ages, having had one previously I was never keen going out on it to be honest, I bought it on the spur of the moment, second hand, and it was not really my choice so I never felt it was right for me, never felt it was big enough really, and when I got stuck crossing the road when it suddenly stopped I went off the idea altogether. I felt I could not trust it, and worried that it would let me down so I would be left unable to get home again. Basically I did not feel safe riding it. I thought long and hard about having another one, I hummed and harred about which kind to have, whether I wanted one at all, pondered, did my research, changed my mind, realised I do need to get my independence back, and decided to go for it. I tried every mobility place I could find in a 20 mile radius, I sat on many scooters, even rode a few, whipping round an industrial estate at a heady 8mph. I found that there are a few people out there who are prepared to rip you off, one mobility place not to far distance from my home, wanted to charge £995 for a second hand scooter. You can buy a new one for less than that!
Eventually I found a place on an industrial estate selling both new and second hand scooters run by a very nice man who serviced the scooters for a nearby large shopping centre. We spent 25 minutes riding round looking for the unit and almost gave up, only to find it at the last minute as we were ready to drive away. It was only a small unit, tucked in a corner, with a small A board on the pavement, indicating its existence. The prices were much more accessible to me, the man in charge knew what he was talking about and talked me through the different kinds of scooters and recommended the makes he thought to be more reliable. I was looking at a TGA red model sitting in the corner but the price was beyond me, apparently they are the Rolls Royce of mobility scooters! I had done some research and found out that they did seem to be a good make. I was able to sit on it and found it comfortable then I was told he had a second hand one just in, the man who had owned it could not longer use it and so he had traded it in for a wheelchair. It was only sold in the Spring, had not been used much, and it was at that moment, in his workshop being checked over and would be ready in a few days. He named a price, I could afford it and it seemed reasonable to me, for what he was offering. I said I would look at it when it was available to view and was given a date a few days hence.
In the meantime we looked round for a shed in which to store my new vehicle. I did not want a very big one, we already had a shed in the garden, but it was not in the best place to get a scooter in and out with ease being up a step and across the lawn. I wanted a small shed on the patio so that I could ride the scooter out and go straight out of the side alley into the street. We ordered the shed and it arrived, and was erected, the day after my new scooter came, for I decided, upon a test drive, to purchase the second hand TGA Dave had for sale. I rode it around the industrial estate and decided it was comfortable and that I could manage it. He very kindly delivered it for me, arriving on a Wednesday morning in a small white van, pulling a ramp down from the back of the van Dave pushed the scooter down the ramp and pushed it round to the back garden for me. I had already purchased a waterproof cover to protect it, until my shed arrived, and knowing the cover would be useful for if I visited anybody and wanted to make sure my transport did not get wet.
I am having a small ramp made for my shed as we speak, for when the scooter arrived I realised that the threshold to the shed was a little higher than I could ride over and I need a ramp to be able to get it in and out comfortably. At the moment hubby has to get it in and out, leaving it wrapped in its navy blue waterproof cape, held down by a house brick so that it will not blow away. I have been out on my new mobility scooter a few times, weather permitting, and I realise that it is a facility I need. I cannot walk far, and certainly cannot get to the local shops or library so I was utterly reliant on somebody taking me in a car before, the loss of my independence was making me depressed and my life was becoming insular, something I had to change, after all we only have one life and you should live it to the full. I have ehlers danlos hypermobility syndrome and very bad arthritis, I am getting no better, infact I am getting worse. I need to live my own life, I need to get out and about, go to places I want to visit, see friends I want to see, I want to be independant. I have to embrace my new mobility scooter and enjoy using it, getting out and about I am sure will make all the difference to my well being and my mental attitude. I am looking forward to having the ramp fitted so I can get the scooter in and out when I want to. At present we are watching the weather each day, will it be okay to go out or will it be pouring with rain, not the best sort of day to be sitting getting wet! Unless you have been stuck at home day after day, unable to get out to the shops or do something as simple as get round to visit a friend, you will not know how difficult it can be, believe me its not great! I did not want one, in my heart I still do not want one, but I know I need one, and that is the difference. The choice is mine, but really I have no choice.
I wonder how I could customise my new transport!
Eventually I found a place on an industrial estate selling both new and second hand scooters run by a very nice man who serviced the scooters for a nearby large shopping centre. We spent 25 minutes riding round looking for the unit and almost gave up, only to find it at the last minute as we were ready to drive away. It was only a small unit, tucked in a corner, with a small A board on the pavement, indicating its existence. The prices were much more accessible to me, the man in charge knew what he was talking about and talked me through the different kinds of scooters and recommended the makes he thought to be more reliable. I was looking at a TGA red model sitting in the corner but the price was beyond me, apparently they are the Rolls Royce of mobility scooters! I had done some research and found out that they did seem to be a good make. I was able to sit on it and found it comfortable then I was told he had a second hand one just in, the man who had owned it could not longer use it and so he had traded it in for a wheelchair. It was only sold in the Spring, had not been used much, and it was at that moment, in his workshop being checked over and would be ready in a few days. He named a price, I could afford it and it seemed reasonable to me, for what he was offering. I said I would look at it when it was available to view and was given a date a few days hence.
In the meantime we looked round for a shed in which to store my new vehicle. I did not want a very big one, we already had a shed in the garden, but it was not in the best place to get a scooter in and out with ease being up a step and across the lawn. I wanted a small shed on the patio so that I could ride the scooter out and go straight out of the side alley into the street. We ordered the shed and it arrived, and was erected, the day after my new scooter came, for I decided, upon a test drive, to purchase the second hand TGA Dave had for sale. I rode it around the industrial estate and decided it was comfortable and that I could manage it. He very kindly delivered it for me, arriving on a Wednesday morning in a small white van, pulling a ramp down from the back of the van Dave pushed the scooter down the ramp and pushed it round to the back garden for me. I had already purchased a waterproof cover to protect it, until my shed arrived, and knowing the cover would be useful for if I visited anybody and wanted to make sure my transport did not get wet.
I am having a small ramp made for my shed as we speak, for when the scooter arrived I realised that the threshold to the shed was a little higher than I could ride over and I need a ramp to be able to get it in and out comfortably. At the moment hubby has to get it in and out, leaving it wrapped in its navy blue waterproof cape, held down by a house brick so that it will not blow away. I have been out on my new mobility scooter a few times, weather permitting, and I realise that it is a facility I need. I cannot walk far, and certainly cannot get to the local shops or library so I was utterly reliant on somebody taking me in a car before, the loss of my independence was making me depressed and my life was becoming insular, something I had to change, after all we only have one life and you should live it to the full. I have ehlers danlos hypermobility syndrome and very bad arthritis, I am getting no better, infact I am getting worse. I need to live my own life, I need to get out and about, go to places I want to visit, see friends I want to see, I want to be independant. I have to embrace my new mobility scooter and enjoy using it, getting out and about I am sure will make all the difference to my well being and my mental attitude. I am looking forward to having the ramp fitted so I can get the scooter in and out when I want to. At present we are watching the weather each day, will it be okay to go out or will it be pouring with rain, not the best sort of day to be sitting getting wet! Unless you have been stuck at home day after day, unable to get out to the shops or do something as simple as get round to visit a friend, you will not know how difficult it can be, believe me its not great! I did not want one, in my heart I still do not want one, but I know I need one, and that is the difference. The choice is mine, but really I have no choice.
I wonder how I could customise my new transport!
Thursday, 18 October 2012
Don`t want to look this way any longer!
I don`t want to look the way I do anymore, so I decided to do something to change it. I am too heavy and I realised I would feel much happier, within myself, if I lost weight. Now I have said this many times before, and have been a yoyo dieter for years so you can be forgiven for thinking "here we go again". In the past I have lost a bit of weight, then put it back on again, and more. When my son got married I was more determined, after all I had something to aim for, and I managed to loose 6 stone in weight, and yes I felt better for it. I hoped it might help the pain I get because of my arthritis but unfortunately that remained the same, but my appearance gave me more confidence and I felt better about myself. Unfortunately, because I take hormones for breast cancer, which make me put on weight, and also because I was not so careful with the food I eat, I put on a little weight, but not the whole 6 stone, I gained about 2 stone. I could see myself putting on the whole 6 stone altogether if I did nothing about it, so I decided to take myself in hand and start my healthy eating routine again. I am being more strict with myself and trying to make sure I do not eat more than I need to, and avoid foods high in fat and sugar and so far I have managed to loose 12 pounds. I always find the first week of a diet to be the most difficult, but as the weight starts to reduce, and as my body gets used to the new regime, it gets easier and my determination strengthens. It is great to discover that loss of a pound or two when I stand on the scales and that encourages me to carry on with what I have started. I have certain clothes in my wardrobe which I would dearly love to wear but at the moment I am unable to get them on so that is my aim, to be able to wear that beautiful coat, to do up the button on those trousers, to wear the top with the lovely design on the front. I might be 57 years old but that does not mean I have to be frumpy and wear clothes resembling a sack. Hopefully I can succeed this time, I am going to try very hard to do so, I know that. :-)
Monday, 15 October 2012
Life is what you make of it.
I write a few different blogs,
The Poppy Chronicles follows the life of my beautiful 2 year old granddaughter, nice to look back on and remember as she gets older.
http://www.blogger.com/blogger.g?blogID=6806281555498147020#overview/src=dashboard
How to deal with breast cancer, how I discovered I had breast cancer, my treatment, where I am now over 7 years later.
http://www.blogger.com/blogger.g?blogID=8762824068303806919#overview/src=dashboard
Ehlers Danlos Syndrome, literally a pain in my life!
http://www.blogger.com/blogger.g?blogID=5411132973395355334#overview/src=dashboard
My loose joints, arthritis and pain that I suffer as a result, what I think about it and how I deal with it, or not, as the case may be!
And this one, about my life at 57, and being a loving grandma.
So I thought today I would bring them all together, so that you will know the whole person.
I realised I was double jointed, or as they say now hypermobile, at the age of 5. I did the splits in gym class while my teacher looked on amazed that I was able to slide right down to the floor.
"Did you know you could do that?" she asked. I was as wise as she was, I actually had no idea!
Now at the age of 57, rather than being my party piece, I could not only do splits, I could high kick, tie myself up in knots by twisting my legs around my neck, and all sorts of other wierd and wonderful movements, my loose joints have caused me all kinds of problems. Arthritis being one, my back hurts all the time, both knees creak and grind causing me pain, my hip sublaxes when I turn over in bed. It used to sublax sending me falling to the floor on my way from school, now I know to be very careful! I now cannot walk far, due to the pain I am in, and my life is severley restricted as a result, but I have my family and friends. I am lucky.
At the age of 49, after a routine mammogram, I discovered to my horror that I had breast cancer. To cut a long story short, more is available on my blog, I had an operation, radiotherapy, chemotherapy, lost my hair, and despite my cancer being grade 3, which is very bad, I am still here 7 years later!
Take that cancer!
Two years ago my husband and I became proud grandparents, that did not go smoothly. Our daughter and son in law had IVF treatment resulting in a triplet pregnancy. Only 2 eggs were implanted but one split into 2, identical twins. Triplets. One embryo did not develop over 8 weeks, and then one twin got complete heart block caused by lupus, the health problem our daughter has, then twin to twin transfusion was a problem and one of our beautiful girls did not make it. Poppy was born prematurely in July of 2010, weighing just 3 pounds 4 ounces. She was in hospital for 6 weeks, today she is a happy, healthy little girl, well mostly healthy, she has problems with her chest for which she has to take an inhaler, and she is a joy.
The last word, but certainly not least, goes to my husband. He saved a life when he donated his bone marrow to a stranger. He had been on the Anthony Nolan list for years when he was called upon to help and he had no hesitation in doing it. He said it was his way of giving back after all that was done for me. Last year we were put in touch with the lady whose life he saved, a little younger than us by a couple of years or so, she is an American lady with a son and daughter, just like us, who would have died, and almost did, but for the bone marrow transplant my husband gave her. We are hoping to meet her and her husband next year. We are so happy she is well and getting on with her life. That is reward enough.
And so, that is my life. I have not had it easy, but then has anybody? Life is what you make of it, you have ups and downs, losses and loves. I am grateful and very lucky to be here.
The Poppy Chronicles follows the life of my beautiful 2 year old granddaughter, nice to look back on and remember as she gets older.
http://www.blogger.com/blogger.g?blogID=6806281555498147020#overview/src=dashboard
How to deal with breast cancer, how I discovered I had breast cancer, my treatment, where I am now over 7 years later.
http://www.blogger.com/blogger.g?blogID=8762824068303806919#overview/src=dashboard
Ehlers Danlos Syndrome, literally a pain in my life!
http://www.blogger.com/blogger.g?blogID=5411132973395355334#overview/src=dashboard
My loose joints, arthritis and pain that I suffer as a result, what I think about it and how I deal with it, or not, as the case may be!
And this one, about my life at 57, and being a loving grandma.
So I thought today I would bring them all together, so that you will know the whole person.
I realised I was double jointed, or as they say now hypermobile, at the age of 5. I did the splits in gym class while my teacher looked on amazed that I was able to slide right down to the floor.
"Did you know you could do that?" she asked. I was as wise as she was, I actually had no idea!
Now at the age of 57, rather than being my party piece, I could not only do splits, I could high kick, tie myself up in knots by twisting my legs around my neck, and all sorts of other wierd and wonderful movements, my loose joints have caused me all kinds of problems. Arthritis being one, my back hurts all the time, both knees creak and grind causing me pain, my hip sublaxes when I turn over in bed. It used to sublax sending me falling to the floor on my way from school, now I know to be very careful! I now cannot walk far, due to the pain I am in, and my life is severley restricted as a result, but I have my family and friends. I am lucky.
At the age of 49, after a routine mammogram, I discovered to my horror that I had breast cancer. To cut a long story short, more is available on my blog, I had an operation, radiotherapy, chemotherapy, lost my hair, and despite my cancer being grade 3, which is very bad, I am still here 7 years later!
Take that cancer!
Two years ago my husband and I became proud grandparents, that did not go smoothly. Our daughter and son in law had IVF treatment resulting in a triplet pregnancy. Only 2 eggs were implanted but one split into 2, identical twins. Triplets. One embryo did not develop over 8 weeks, and then one twin got complete heart block caused by lupus, the health problem our daughter has, then twin to twin transfusion was a problem and one of our beautiful girls did not make it. Poppy was born prematurely in July of 2010, weighing just 3 pounds 4 ounces. She was in hospital for 6 weeks, today she is a happy, healthy little girl, well mostly healthy, she has problems with her chest for which she has to take an inhaler, and she is a joy.
The last word, but certainly not least, goes to my husband. He saved a life when he donated his bone marrow to a stranger. He had been on the Anthony Nolan list for years when he was called upon to help and he had no hesitation in doing it. He said it was his way of giving back after all that was done for me. Last year we were put in touch with the lady whose life he saved, a little younger than us by a couple of years or so, she is an American lady with a son and daughter, just like us, who would have died, and almost did, but for the bone marrow transplant my husband gave her. We are hoping to meet her and her husband next year. We are so happy she is well and getting on with her life. That is reward enough.
And so, that is my life. I have not had it easy, but then has anybody? Life is what you make of it, you have ups and downs, losses and loves. I am grateful and very lucky to be here.
Monday, 17 September 2012
DIFFICULTY FINDING A MOBILTY SCOOTER.
I did not realise it would be so difficult choosing a mobility scooter. I am a larger lady, (shall we say voluptuous!) and am tall, 5 foot 10 inches tall to be precise, although I have actually shrunk, I used to be a little under 6 foot tall and I have really long legs. My problem, in choosing a mobility scooter, has been the length of my legs. I thought I might go for a 4 wheel scooter this time, I wondered if it would feel safer and more stable, but the 4 wheel models have wheel arches in the place I would put my feet on my old 3 wheel scooter, so making me sit with legs bent under me which I found uncomfortable with my poor arthritic knees. I have only been looking for a short while, so I am as yet unaware if the wheelarch height differs, I shall have to try a lot more scooters before making my final choice, but if the wheelarch on the 4 wheel scooters is as high on all of them I am going to encounter problems as with my long legs I cannot comfortably sit with my feet on the wheelarches, as a shorter person would, because my legs are then bent up into an unnatural position! I may be forced to go for the 3 wheel model but I prefer the seat with the higher back which seems more comfortable and which appears to me, to have better back support and so I am a bit stuck. Sitting with legs bent for 5 minutes is perhaps okay, but for 15, 20 minutes with the legs in such an unnatural position would be too hard. I shall have to look around more, perhaps there are better alternatives out there, I have seen a scooter which resembles a motor bike, with 3 large wheels and which would probably be a very good option, but the price is out of my league, I may aswell learn to drive and use the car than pay out that kind of money! Hopefully I shall find the solution if I keep looking!
Sunday, 9 September 2012
Atypical trigeminal neuralgia caused by dental procedures.
Atypical Trigeminal Neuralgia (ATN), or Type 2 Trigeminal Neuralgia, is a rare form of Trigeminal neuralgia, a disorder of the fifth cranial nerve. This form of neuralgia is difficult to diagnose, as it is rare and the symptoms overlap with several other disorders.[1] The symptoms can occur in addition to having migraine headache, or can be mistaken for migraine alone, or dental problems such as Temporomandibular joint disorder, musculoskeletal issues, or Hypochondriasis. ATN can have a wide range of symptoms and the pain can fluctuate in intensity from mild aching to a crushing or burning sensation, and also to the extreme pain experienced with the more common trigeminal neuralgia.
Symptoms
ATN pain can be described as heavy, aching, stabbing and burning. Some sufferers have a constant migraine-like headache. Others may experience intense pain in one or in all three trigeminal nerve branches, including teeth, ears, sinuses, cheeks, forehead, upper and lower jaws, "behind" the eyes, and scalp. In addition, those with ATN may also experience the shocks or stabs found in type 1 TN.
Many TN and ATN patients have pain that is "triggered" by light touch on shifting trigger zones. ATN pain tends to worsen with talking, smiling, chewing, or in response to sensations such as a cool breeze. The pain from ATN is often continuous, and periods of remission are rare. Both TN and ATN can be bilateral, though the character of pain is usually different on the two sides at any one time.
Causes
The trigeminal nerve.
ATN is usually attributed to inflammation or demyelination, with increased sensitivity of the trigeminal nerve. These effects are believed to be caused by dental procedures, infection, demyelinating diseases, or compression of the trigeminal nerve (by an impinging vein or artery, a tumor, or arterio-veinous malformation). An interesting aspect is that this form affects both men and women equally and can occur at any age, unlike typical trigeminal neuralgia, which is seen most commonly in women. Though TN and ATN most often present in the fifth decade, cases have been documented as early as infancy
Risks
Both forms of Facial Neuralgia are relatively rare, with an incidence recently estimated between 12 and 24 new cases per hundred thousand population per year.[3][4]
ATN often goes undiagnosed or misdiagnosed for extended periods, leading to a great deal of unexplained pain and anxiety. A National Patient Survey conducted by the US Trigeminal Neuralgia Association in the late 1990s indicated that the average facial neuralgia patient may see six different physicians before receiving a first definitive diagnosis. The first practitioner to see facial neuralgia patients is often a dentist who may lack deep training in facial neurology. Thus ATN may be misdiagnosed as Tempormandibular Joint Disorder.[5]
Symptoms
ATN pain can be described as heavy, aching, stabbing and burning. Some sufferers have a constant migraine-like headache. Others may experience intense pain in one or in all three trigeminal nerve branches, including teeth, ears, sinuses, cheeks, forehead, upper and lower jaws, "behind" the eyes, and scalp. In addition, those with ATN may also experience the shocks or stabs found in type 1 TN.
Many TN and ATN patients have pain that is "triggered" by light touch on shifting trigger zones. ATN pain tends to worsen with talking, smiling, chewing, or in response to sensations such as a cool breeze. The pain from ATN is often continuous, and periods of remission are rare. Both TN and ATN can be bilateral, though the character of pain is usually different on the two sides at any one time.
Causes
Risks
Both forms of Facial Neuralgia are relatively rare, with an incidence recently estimated between 12 and 24 new cases per hundred thousand population per year.[3][4]
ATN often goes undiagnosed or misdiagnosed for extended periods, leading to a great deal of unexplained pain and anxiety. A National Patient Survey conducted by the US Trigeminal Neuralgia Association in the late 1990s indicated that the average facial neuralgia patient may see six different physicians before receiving a first definitive diagnosis. The first practitioner to see facial neuralgia patients is often a dentist who may lack deep training in facial neurology. Thus ATN may be misdiagnosed as Tempormandibular Joint Disorder.[5]
Saturday, 8 September 2012
Well what an exciting day I have had today - not!!
Poor old hubby has had raging tooth ache for the last 3 days and despite a visit to the dentist on Thursday who told him there is nothing wrong with his tooth, he said it would settle down in a couple of days, then a visit to the doctor yesterday who gave him anti inflammatories and told him to put olive oil in his ears as there is some wax to come out, he had no sleep last night so another visit followed to the dentist today as he said the pain is worse than anything he has experienced before. His face is now swollen and he is having difficulty talking and the dentist still maintains there is no problem with the tooth, he said he may have an infection of the gum, and he has prescribed antibiotics. So he has been taking the anti inflammatories given to him by the doctor, his antibiotics given to him by the dentist, but as they have not taken off the pain he has also been taking my very strong pain killers which I have on prescription for my back. I know it is not a good thing to take other peoples prescribed medication but he was desperate and nobody seems to know the definate cause, or what to do to aleviate the pain. Even taking all these medications he still has the pain and does not know what to do with himself. The phrase "moaning for England" comes to mind but that is meant to be humerous, not that there is anything humerous about this situation, far from it. It is unusual to see him give in to things like this, so it must be hurting a lot.
I have been looking on the internet, perhaps not the best idea as you can tend to frighten yourself, and I am wondering if neuralgia fits the bill. Inflammation of a nerve, the symptoms for the type of neuralgia which affects the face seems to fit all the symptoms as he is describing them to me. The problem is,you can hardly go into a doctors surgery and say "I think I have neuralgia," in my experience Doctors do not like to be told the diagnosis from a patient, they like to make that decision of their own accord, and then ofcourse I could be wrong, and probably am, after all I have had no medical training and I am certainly not a doctor. Ofcourse it could be a case of an incompetent dentist, who should have diagnosed an infection or absess 3 days ago and prescribed antibiotics accordingly and as he did not do so the infection has well and truly taken hold. We just don`t know what to think. The xray he had at the dentist on Thursday apparently showed no problem but his face is swollen now, he says he can pinpoint which tooth is hurting so much, so perhaps it is a case that the infection or absess has taken too much of a hold and will take some beating. I hope to God there is some improvement really soon.
Poor old hubby has had raging tooth ache for the last 3 days and despite a visit to the dentist on Thursday who told him there is nothing wrong with his tooth, he said it would settle down in a couple of days, then a visit to the doctor yesterday who gave him anti inflammatories and told him to put olive oil in his ears as there is some wax to come out, he had no sleep last night so another visit followed to the dentist today as he said the pain is worse than anything he has experienced before. His face is now swollen and he is having difficulty talking and the dentist still maintains there is no problem with the tooth, he said he may have an infection of the gum, and he has prescribed antibiotics. So he has been taking the anti inflammatories given to him by the doctor, his antibiotics given to him by the dentist, but as they have not taken off the pain he has also been taking my very strong pain killers which I have on prescription for my back. I know it is not a good thing to take other peoples prescribed medication but he was desperate and nobody seems to know the definate cause, or what to do to aleviate the pain. Even taking all these medications he still has the pain and does not know what to do with himself. The phrase "moaning for England" comes to mind but that is meant to be humerous, not that there is anything humerous about this situation, far from it. It is unusual to see him give in to things like this, so it must be hurting a lot.
I have been looking on the internet, perhaps not the best idea as you can tend to frighten yourself, and I am wondering if neuralgia fits the bill. Inflammation of a nerve, the symptoms for the type of neuralgia which affects the face seems to fit all the symptoms as he is describing them to me. The problem is,you can hardly go into a doctors surgery and say "I think I have neuralgia," in my experience Doctors do not like to be told the diagnosis from a patient, they like to make that decision of their own accord, and then ofcourse I could be wrong, and probably am, after all I have had no medical training and I am certainly not a doctor. Ofcourse it could be a case of an incompetent dentist, who should have diagnosed an infection or absess 3 days ago and prescribed antibiotics accordingly and as he did not do so the infection has well and truly taken hold. We just don`t know what to think. The xray he had at the dentist on Thursday apparently showed no problem but his face is swollen now, he says he can pinpoint which tooth is hurting so much, so perhaps it is a case that the infection or absess has taken too much of a hold and will take some beating. I hope to God there is some improvement really soon.
Friday, 31 August 2012
SO MANY MOBILITY SCOOTERS.
There are a bewildering array of mobility scooters out there, small ones which fold up and lift into the boot of your car, middle sized ones that seem to be very popular, probably because they are not too big to store away, and you can, if you really want to, take some of them apart easily enough and put into your car or van to take with you wherever you go, though not so easy to sort out by the looks of it as the foldable ones. Some even fold down into a suitcase! There are big ones which you can use on the road, though how safe I would feel riding on one of those in front of a lorry or a bus remains to be seen! Some of them are almost the size of a small car, which begs the question, why not just get a small car? Some are off road, with larger wheels to enable you to go into the countryside, maybe to take the dog for a walk, though quite how off road they are makes me wonder. The prices of these mobility scooters vary enormously too, a foldable one can be £499, which ofcourse is so much less than £500! Ones with hard bodies on them to save you getting wet in the rain can be £6000! The seats are small or large, some looking a bit hard and plastic, not very comfortable at all, some look almost like your favourite armchair - I said almost! You can have a basket at the front in which to put your shopping, or a bag at the bag, hanging from the seat. I don`t think I would want to put my handbag in either the basket or bag, someone could easily snatch it!You have to study them carefully as most have a maximum user weight, some will go for 20 miles on one charge, some smaller ones for only 5, one or two will go for 30 miles on one charge if you choose the bigger batteries, so it depends on the range you want to travel and where you actually want to go. Using them on the flat the battery will not run down as quick as it would if you use the scooter on a hill or incline, you can get a soft cape type of affair, waterproof, which you drape over yourself in an attempt to keep dry, or you can have a soft plastic cover on a frame or a hard plastic or fibre glass frame and cover. You can have soft tyres which can have a puncture or solid tyres which never puncture but which give you a bumpy ride in comparison. As I said the whole range of different scooters, different manufacturers making similar scooters is diverse and the prices vary quite a lot. So it all boils down to this, I am totally confused!
Wednesday, 29 August 2012
THIS IS ME.
I have called this thoughts of a Grandma, but thats only because they are my thoughts and I am a Grandma!
I am 57 years old, and where on earth have all those years gone? In my head I am about 27 but unfortunately my body lets me down and sometimes I feel 77 not 57. I am hypermobile and so my joints are wearing out much faster than normal causing arthritis and 24/7 pain. I had problems with my knees since childhood and would often turn up at school sporting a bandage from thigh down to ankle, on doctors orders, because of the fluid on my knee. Quite why the bandage had to be so big I really don`t know, maybe to prevent me using my knee too much, I certainly could not bend it, and it was most uncomfortable! I did not have to wear the bandage all the time, just those times when my knee would swell up to twice the size, which was quite a lot. I also had lots of problems with my hip sublaxing causing me to fall over without warning when it gave way. I could not prevent it happening, and I could not stay on my feet!I would be walking along and my hip would slip causing me to go down. Many a time the lollipop lady picked me up from the floor when I was on my way home and insisted I sat on the concrete bollard at the side of the road for a while to rest before she crossed me and my friend over the road and saw us on our way. This was all going on before I left primary school at the age of 11 so you can see I have had problems my whole life. I did have my party pieces, I could do splits, wrap my legs around my neck and walk on my hands, put my hands flat on the floor without bending my knees (actually they bend backwards but I was not aware of that until many years later!) I would do backbends, sit on the floor, legs spread and lean forwards to touch my forehead on the floor, I could do high kicks and on one memorable occasion I decided to do a high kick while wearing my new,but rather tighter than normal,dress. Disaster! My legs shot from under me as I high kicked, the motion took me upwards and I did an involuntarily somersault, landing flat on my face. My sister, who was watching, spat her tea out as she could not stop laughing and had hysterics for a good while afterwards! I have never lived it down to this day! So the moral of that story is, don`t do a high kick while wearing a tight skirt! Even if you are only 11 at the time! My thumb bends down to my wrist and my fingers bend backwards all too easily, my jaw clicks and grinds when I eat something to hard or too chewy, my ankles give way underneath me regularly and many is the time I have fallen down the stairs from top to bottom. Today I am wearing a support strap on my ankle as it is painful and unstable. Do I wish I had been wrapped in cotton wool and not used my joints too much? Certainly I could do without the pain but if we are not allowed to do anything in this life, what a boring life it would be. My back hurts all the time, pain killers don`t really work well on my body, my hips scream with pain when I walk, my knees are now so bad I could probably do with knee replacements but operations don`t work well with ehlers danlos hypermobility syndrome, which is the rather long name for what is the matter with me. My knees creak and grind and the agony if I try to kneel down brings tears to my eyes. I dread falling over as I despair of how I would get up again! I certainly could not crawl to something to lever myself up again. Sitting on low seats is a huge problem as my leg muscles are not strong now and getting up from a low seat is such a struggle that I try to avoid it at all costs! My life has had to change considerably, I cannot walk far now as the pain becomes too much for me to bear. Labyrinthitis is another problem, which causes me to feel dizzy as though the room is spinning around me, and often comes on for a while when I lie down, so I am afraid to go swimming incase I have an attack in the water. Water and dizzyness is not a good combination! I love swimming so not feeling confident enough to go is something I miss a lot. I am hoping to have a new mobility scooter soon, my old one let me down a lot and I once got stuck crossing the road, not good if a bus is coming! I don`t really like having to use a scooter but the alternative is being stuck in the house so really there is no alternative. I am fortunate to have a good family and good friends, I have a love of reading, writing, painting and I also like to bake, though I don`t do as much as I used to. Sometimes my life gets me down, I can`t deny that, loss of independence is a huge thing and I have lost a lot of my independence, though I am trying to hang on for dear life to the little I have left. I wish I had learnt to drive when I was younger, but I don`t have the confidence to do so now, I only wish I did. So I have to make the best of my life, pace myself as doing things at my own pace is the only way I can manage. I am grateful for those around me who love me and help me.
I am 57 years old, and where on earth have all those years gone? In my head I am about 27 but unfortunately my body lets me down and sometimes I feel 77 not 57. I am hypermobile and so my joints are wearing out much faster than normal causing arthritis and 24/7 pain. I had problems with my knees since childhood and would often turn up at school sporting a bandage from thigh down to ankle, on doctors orders, because of the fluid on my knee. Quite why the bandage had to be so big I really don`t know, maybe to prevent me using my knee too much, I certainly could not bend it, and it was most uncomfortable! I did not have to wear the bandage all the time, just those times when my knee would swell up to twice the size, which was quite a lot. I also had lots of problems with my hip sublaxing causing me to fall over without warning when it gave way. I could not prevent it happening, and I could not stay on my feet!I would be walking along and my hip would slip causing me to go down. Many a time the lollipop lady picked me up from the floor when I was on my way home and insisted I sat on the concrete bollard at the side of the road for a while to rest before she crossed me and my friend over the road and saw us on our way. This was all going on before I left primary school at the age of 11 so you can see I have had problems my whole life. I did have my party pieces, I could do splits, wrap my legs around my neck and walk on my hands, put my hands flat on the floor without bending my knees (actually they bend backwards but I was not aware of that until many years later!) I would do backbends, sit on the floor, legs spread and lean forwards to touch my forehead on the floor, I could do high kicks and on one memorable occasion I decided to do a high kick while wearing my new,but rather tighter than normal,dress. Disaster! My legs shot from under me as I high kicked, the motion took me upwards and I did an involuntarily somersault, landing flat on my face. My sister, who was watching, spat her tea out as she could not stop laughing and had hysterics for a good while afterwards! I have never lived it down to this day! So the moral of that story is, don`t do a high kick while wearing a tight skirt! Even if you are only 11 at the time! My thumb bends down to my wrist and my fingers bend backwards all too easily, my jaw clicks and grinds when I eat something to hard or too chewy, my ankles give way underneath me regularly and many is the time I have fallen down the stairs from top to bottom. Today I am wearing a support strap on my ankle as it is painful and unstable. Do I wish I had been wrapped in cotton wool and not used my joints too much? Certainly I could do without the pain but if we are not allowed to do anything in this life, what a boring life it would be. My back hurts all the time, pain killers don`t really work well on my body, my hips scream with pain when I walk, my knees are now so bad I could probably do with knee replacements but operations don`t work well with ehlers danlos hypermobility syndrome, which is the rather long name for what is the matter with me. My knees creak and grind and the agony if I try to kneel down brings tears to my eyes. I dread falling over as I despair of how I would get up again! I certainly could not crawl to something to lever myself up again. Sitting on low seats is a huge problem as my leg muscles are not strong now and getting up from a low seat is such a struggle that I try to avoid it at all costs! My life has had to change considerably, I cannot walk far now as the pain becomes too much for me to bear. Labyrinthitis is another problem, which causes me to feel dizzy as though the room is spinning around me, and often comes on for a while when I lie down, so I am afraid to go swimming incase I have an attack in the water. Water and dizzyness is not a good combination! I love swimming so not feeling confident enough to go is something I miss a lot. I am hoping to have a new mobility scooter soon, my old one let me down a lot and I once got stuck crossing the road, not good if a bus is coming! I don`t really like having to use a scooter but the alternative is being stuck in the house so really there is no alternative. I am fortunate to have a good family and good friends, I have a love of reading, writing, painting and I also like to bake, though I don`t do as much as I used to. Sometimes my life gets me down, I can`t deny that, loss of independence is a huge thing and I have lost a lot of my independence, though I am trying to hang on for dear life to the little I have left. I wish I had learnt to drive when I was younger, but I don`t have the confidence to do so now, I only wish I did. So I have to make the best of my life, pace myself as doing things at my own pace is the only way I can manage. I am grateful for those around me who love me and help me.
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