Been a while, I've been busy but also lost my mojo a bit for blogging lately. Had a few ups and downs, life's difficult at times.
My pain levels go up and down but more up than down to be honest with you. When I finished taking letrozole at the start of the year, I was taking it for breast cancer, I hoped the pain might subside a bit as I was told it could make joint pain and arthritis worse. Yes it made it worse, or was it naturally about to get worse anyway when I began taking it, who knows? Unfortunately the pain stayed the same. Life sucks.
Walking is too painful now, standing is agony, a minute standing and I have to take a seat. Even just lying in bed, which used to bring relief, is painful. Take this morning for instance, lie on right side, hip sublaxes. Turn on to left side, aches and pains everywhere, shoulder painful. Sit up in bed, back is agony. I'm just so fed up I don't know what to do with myself. Living in a world of pain constantly is no fun.
I try to keep occupied, I had some lovely really good colouring pencils for my birthday so I draw and I make cards. I don't know if my drawings are very good but I enjoy it. People seem to like them, or maybe they are being kind. Makes me laugh when people call themselves artist and they arranged a pile of rubbish in the centre of a bed and put it on display as art! That's not art, it's a pile of rubbish on a bed!!
My mobility scooter is my lifeline, it's also at times, a hated object. It gives me independence, I can get to the shops, library, doctors, take the dogs for a walk, enjoy the lakes in the village, meet people, visit friends, freedom in other words. It's also my restriction, I need it to get around, my walking is so restricted, so painful, so short, that I literally cannot manage to walk any distance. Walking from lounge to toilet is a struggle, walking from lounge to kitchen is a struggle. When I reach the kitchen I sit on a high stool to make a cup of tea, I cannot stand to wait for the kettle to boil! When I leave the house I go on my mobility scooter or in the car, then use my mobility scooter when I reach my destination, I have a small one which folds and fits in the boot. I just wish I could walk around freely as I used to, I wish my independence was my own two feet, not four wheels. I am lost if my scooters break down, a puncture can make me stressed as I know that's me out of action. I must always ensure the batteries are charged. All kinds of things can go wrong, after all its mechanical, and mechanical things can have a tendency to break down, however well made, however well looked after, however well serviced. Mechanical fault now worries me more than it should. I suppose the mechanics of my body have let me down, my joints have crumbled, seized, been overused. Being hypermobile brings a lot of problems to a bodies joints, over extension of joints is regretted in later life, once you realise what damage it's done to back, hips, knees to do the splits, high kicks, tie your legs around your neck, all the party tricks which others couldn't do, which freaked your friends out. My knees bend backwards, as do my elbows, my thumb bends backwards to my wrist, things which have provided entertainment and made friends say yuck!
Arthritis, hypermobility syndrome. IBS. All part and parcel, hand in hand.
As I said, life sucks.
Thursday, 2 October 2014
Sunday, 25 May 2014
Getting older sucks.
I'm 58, I shall be 59 in July and can hardly believe I've reached this age, it seems only last month I was 35, what the hell happened??!!
I'm not very keen on this getting older lark, it wouldn't be so bad if I didn't have hypermobility syndrome and severe arthritis but they have taken their toll and I am in pain all the time, can't do what I want to and walking has become a problem. I use a mobility scooter nowadays, not that I want to but needs must, I can't walk without pain so what alternative do I have?
The big problem facing us at the moment is hubby and his feet. To say they are manky is an understatement! He is going in hospital on Thursday for an operation to remove his bunion and realign three toes, he's going to be in plaster and on crutches for six weeks. Six weeks!!! He won't be able to drive for about six weeks, I can't drive, this means we are in the @#+**+##@ He not only drives me where I need to go, shopping, visiting, etc., he also does a lot of things around the house I can't manage, so we shall both be reliant on the kindness of family and friends. Our two dogs need walking, we need shopping, we need to leave the house! Yes I have the mobility scooter, which he tells me he will be borrowing, but then we have to go out one by one! I have a small scooter which folds and goes in the boot of the car, not much use if we aren't going out in the car! He could use the smaller scooter to get around the village but will we both look stupid on scooters, and on a practical level the small one doesn't like going up slopes let alone hills!!
This could all end badly!
Getting older really sucks :-(
I'm not very keen on this getting older lark, it wouldn't be so bad if I didn't have hypermobility syndrome and severe arthritis but they have taken their toll and I am in pain all the time, can't do what I want to and walking has become a problem. I use a mobility scooter nowadays, not that I want to but needs must, I can't walk without pain so what alternative do I have?
The big problem facing us at the moment is hubby and his feet. To say they are manky is an understatement! He is going in hospital on Thursday for an operation to remove his bunion and realign three toes, he's going to be in plaster and on crutches for six weeks. Six weeks!!! He won't be able to drive for about six weeks, I can't drive, this means we are in the @#+**+##@ He not only drives me where I need to go, shopping, visiting, etc., he also does a lot of things around the house I can't manage, so we shall both be reliant on the kindness of family and friends. Our two dogs need walking, we need shopping, we need to leave the house! Yes I have the mobility scooter, which he tells me he will be borrowing, but then we have to go out one by one! I have a small scooter which folds and goes in the boot of the car, not much use if we aren't going out in the car! He could use the smaller scooter to get around the village but will we both look stupid on scooters, and on a practical level the small one doesn't like going up slopes let alone hills!!
This could all end badly!
Getting older really sucks :-(
Thursday, 1 May 2014
Getting older, trials and tribulations, arthritis and hypermobility.
I don't particularly like this getting older lark. I do seem to be getting older, at least my body does, much quicker than I anticipated, having hypermobility syndrome means that although I have excessive movement in my joints, I can still bend over and put my hands flat on the floor whilst keeping my legs straight (yes actually my knees bend backwards!) but I can't stand for long or walk far! Although my joints are supple, or some of them still are, most of them hurt like hell a lot of the time. No, when I say most of the time, some of my joints hurt all of the time. Take my back for instance, the pain in my lower back never really leaves me, it can ease slightly, it moves, it spreads, but it's always there!
There are other things I dislike about getting older, no energy, I do one thing, I am exhausted. I don't mean tired, or a bit weary, or slightly worn out, I mean full on, can't stand up, can't even think about moving, exhausted! Or again is that part of my hypermobility syndrome? Well yes, if I'm honest, trying to carry out day to day tasks with a loose jointed body that doesn't quite fit together, which moves sometimes in a different way to how you expect, takes every ounce of energy available, leaving none left over! I attribute some of the tiredness and lack of energy to getting older, simply because I used to have more energy when I was younger, mind you much, much younger, than I am now, and I've always had hypermobility syndrome! Then bring constant pain into the equation, that is exhausting.
I don't like the fact that I have to dye my hair, well Rachael my lovely talented hair dresser does, every few weeks, otherwise my barnett would sport silver streaks. I'm banned from dying my own hair now, even though it would be much cheaper, I kept dying the bathroom! I can't help it I need to take off my glasses and I can't see enough to tell where I've dropped blobs of hair dye without my specs!
Then we come to teeth. True I have a sweet tooth. I wasn't prepared for the bits falling off my teeth, the cracking of teeth leaving me with some teeth that are only half there! My jaw is hypermobile too which can be a bit awkward if I yawn too much and find myself stuck, mouth open! Massage and brute force comes in handy!
Then there are elasticated waist bands, or as predictive text would have it domesticated waist bands. I swore I wouldn't use elasticated waist bands, they are for old people I said. They are soooo comfortable! They are also easy to get on when in pain, after all leggings have elastic waist bands, and everyone wears leggings , don't they? On the subject of leggings ladies, please please please only wear them with a longer top which covers your bottom, for older ladies preferably one which comes to your knees! Don't wear them with a jumper or top that comes just past the waist, they are, after all, really thick tights, or in some cases if you bought your leggings really cheaply or a size too small so you have to stretch them a lot to cover the area in question, really quite thin material, I've seen quite a few ladies wearing leggings with a shorter top, with next week's washing shining through for all to see! Cover up ladies, nobody wants to see if you wear big pants or a thong! These unfortunate people have often been with friend, boy friend, partner or whoever, you would think they would say "don't go out like that, I can see your knickers", now wouldn't you.
But I digress, what has all that to do with ageing? Well quite a lot as it happens because I digress quite a bit if I'm chatting to someone, I forget what I'm talking about mid sentence and waffle on about an entirely different subject before I remember I wasn't talking about that one in the first place! I'm often stuck for a word mid sentence too, I know it's in there somewhere but it won't come out, it's very frustrating! "Now where was I?" Is an offt heard phrase in our house! When my friend and I get together for coffee it's "what was I just saying?" "I can't remember" "it will come back to me in a minute!" Words I have known how to say for many years, and know very well the meaning of, elude me, sit taunting me somewhere at the back of my brain, making me feel idiotic because I have once again stopped mid sentence because I have forgotten the word I need, or have lost my train of thought altogether!
Then there is the creaking, and I'm not talking doors, I'm talking my knees! I walk upstairs, it sounds like I'm stepping on twigs! They hurt too, and are swollen, they have had years of over use, and bending backwards as they do even more use than you would expect. At a back pain centre years ago we were learning the Alexander technique, which is all about posture. We all took turns to stand centre circle, the others in the group saying if our shoulders slouched, if we bent slightly, when my turn came the physio said "you have perfect posture" then spoilt it by saying "except for one thing, your knees bend backwards!!" I knew I was hypermobile, or double jointed as it was called years ago, but even I didn't realise my knees bent backwards! All those years I thought I was standing with my legs straight but I was actually bending them backwards without realising it! No wonder my knees creak and grind, swell and ache, they have had a lot of punishment in 58 years! One doctor told me years ago I shall need them both replacing, I think I've come to that stage now, I cannot kneel down the pain is excruciating I would hit the roof, but with hypermobility syndrome operations of this kind aren't a good thing, I have faulty collagen you see which affects joints, muscle, ligaments, tendons, well virtually everything, so operations to replace joints may not be successful.
Then there are my hands, some joints have enlarged due to arthritis so I can't get my rings on anymore, or in some cases off, and holding a pen, pencil, paint brush, sewing needle, icing bag, is painful. Squeezing an icing bag is to me now an achievement, I might just about get happy birth written before my fingers become too painful and to think I used to stand in my kitchen for hours icing elaborate cakes for my kids birthdays. I'm sad I can't manage so well now, especially with a beautiful 3 year old granddaughter to make and ice cakes for. Looks like I'm in for some pain come July, her 4th birthday cake might be a lot simpler than I would have liked.
That's the good thing about getting older, if you are lucky you will get grandchildren, she brings us so much joy and laughter, so much pleasure.
It's too sad for words if you have to see your own children suffer, or be unhappy. That for me, is the very worst thing about getting old. I protected my kids when they were little, got told off for being over protective as they got older, now they are adults I can do little or nothing to protect them from hurt. I wish I could give them the world.
There are other things I dislike about getting older, no energy, I do one thing, I am exhausted. I don't mean tired, or a bit weary, or slightly worn out, I mean full on, can't stand up, can't even think about moving, exhausted! Or again is that part of my hypermobility syndrome? Well yes, if I'm honest, trying to carry out day to day tasks with a loose jointed body that doesn't quite fit together, which moves sometimes in a different way to how you expect, takes every ounce of energy available, leaving none left over! I attribute some of the tiredness and lack of energy to getting older, simply because I used to have more energy when I was younger, mind you much, much younger, than I am now, and I've always had hypermobility syndrome! Then bring constant pain into the equation, that is exhausting.
I don't like the fact that I have to dye my hair, well Rachael my lovely talented hair dresser does, every few weeks, otherwise my barnett would sport silver streaks. I'm banned from dying my own hair now, even though it would be much cheaper, I kept dying the bathroom! I can't help it I need to take off my glasses and I can't see enough to tell where I've dropped blobs of hair dye without my specs!
Then we come to teeth. True I have a sweet tooth. I wasn't prepared for the bits falling off my teeth, the cracking of teeth leaving me with some teeth that are only half there! My jaw is hypermobile too which can be a bit awkward if I yawn too much and find myself stuck, mouth open! Massage and brute force comes in handy!
Then there are elasticated waist bands, or as predictive text would have it domesticated waist bands. I swore I wouldn't use elasticated waist bands, they are for old people I said. They are soooo comfortable! They are also easy to get on when in pain, after all leggings have elastic waist bands, and everyone wears leggings , don't they? On the subject of leggings ladies, please please please only wear them with a longer top which covers your bottom, for older ladies preferably one which comes to your knees! Don't wear them with a jumper or top that comes just past the waist, they are, after all, really thick tights, or in some cases if you bought your leggings really cheaply or a size too small so you have to stretch them a lot to cover the area in question, really quite thin material, I've seen quite a few ladies wearing leggings with a shorter top, with next week's washing shining through for all to see! Cover up ladies, nobody wants to see if you wear big pants or a thong! These unfortunate people have often been with friend, boy friend, partner or whoever, you would think they would say "don't go out like that, I can see your knickers", now wouldn't you.
But I digress, what has all that to do with ageing? Well quite a lot as it happens because I digress quite a bit if I'm chatting to someone, I forget what I'm talking about mid sentence and waffle on about an entirely different subject before I remember I wasn't talking about that one in the first place! I'm often stuck for a word mid sentence too, I know it's in there somewhere but it won't come out, it's very frustrating! "Now where was I?" Is an offt heard phrase in our house! When my friend and I get together for coffee it's "what was I just saying?" "I can't remember" "it will come back to me in a minute!" Words I have known how to say for many years, and know very well the meaning of, elude me, sit taunting me somewhere at the back of my brain, making me feel idiotic because I have once again stopped mid sentence because I have forgotten the word I need, or have lost my train of thought altogether!
Then there is the creaking, and I'm not talking doors, I'm talking my knees! I walk upstairs, it sounds like I'm stepping on twigs! They hurt too, and are swollen, they have had years of over use, and bending backwards as they do even more use than you would expect. At a back pain centre years ago we were learning the Alexander technique, which is all about posture. We all took turns to stand centre circle, the others in the group saying if our shoulders slouched, if we bent slightly, when my turn came the physio said "you have perfect posture" then spoilt it by saying "except for one thing, your knees bend backwards!!" I knew I was hypermobile, or double jointed as it was called years ago, but even I didn't realise my knees bent backwards! All those years I thought I was standing with my legs straight but I was actually bending them backwards without realising it! No wonder my knees creak and grind, swell and ache, they have had a lot of punishment in 58 years! One doctor told me years ago I shall need them both replacing, I think I've come to that stage now, I cannot kneel down the pain is excruciating I would hit the roof, but with hypermobility syndrome operations of this kind aren't a good thing, I have faulty collagen you see which affects joints, muscle, ligaments, tendons, well virtually everything, so operations to replace joints may not be successful.
Then there are my hands, some joints have enlarged due to arthritis so I can't get my rings on anymore, or in some cases off, and holding a pen, pencil, paint brush, sewing needle, icing bag, is painful. Squeezing an icing bag is to me now an achievement, I might just about get happy birth written before my fingers become too painful and to think I used to stand in my kitchen for hours icing elaborate cakes for my kids birthdays. I'm sad I can't manage so well now, especially with a beautiful 3 year old granddaughter to make and ice cakes for. Looks like I'm in for some pain come July, her 4th birthday cake might be a lot simpler than I would have liked.
That's the good thing about getting older, if you are lucky you will get grandchildren, she brings us so much joy and laughter, so much pleasure.
It's too sad for words if you have to see your own children suffer, or be unhappy. That for me, is the very worst thing about getting old. I protected my kids when they were little, got told off for being over protective as they got older, now they are adults I can do little or nothing to protect them from hurt. I wish I could give them the world.
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