Hypermobility, arthritis, pain. Life sucks.

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.

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 :-(

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.

GOT A NEW PONCHO.

In an attempt to keep warm this winter whilst riding my mobility scooter, or as I heard a commentator remark on the remembrance day parade this morning, my self propelled motorised wheelchair, not that I like that description much, I don`t want to be a wheelchair user, I much prefer to be a mobility scooter user! I know they are just words but to me its important, mobility scooter doesn't sound as reliant somehow, as wheelchair does. Wheelchair to me suggests someone pushing me around, which I certainly don't want, mobility scooter is more independent, I can get around myself with the use of my trusty scooter. I digress, I was telling you about trying to keep warm, because believe me sitting down whilst going along on a mobility scooter, wheelchair, or whatever you prefer to call it, can get very cold. Walking keeps you warm, you may only be walking slowly or you could be striding along at a fast pace, but whatever speed you walk at keeps you a darn sight warmer than just sitting, driving a mobility scooter along. So I bought a poncho, I do have coats, infact I have quite a few, I like coats rather like other women like shoes, come to think of it I really like shoes too ..........

I have noticed, just lately, that quite a few people can be seen around the places wearing ponchos, they seem to have come back into fashion. I remember the first time they were popular, as I remember them anyway, being the 1970`s, though I cant say I was too keen at that time, but right now in 2013 a poncho seems like a good idea.  You can wear several layers underneath a poncho, I have even got a woollen knitted poncho to wear underneath my outdoor poncho, and layers are meant to be warmer than one thick outfit, and I can attest to that, having gone out this morning wearing a jumper, a knitted poncho, and a poncho made from fleece material over the top, which kept me toasty warm all the way round whilst taking our dogs out. It was more comfortable to wear too, being loose they don`t pull across the stomach whilst sitting. All round a winner!!

I must admit I didn't think I could get so many words out of the title, got a new poncho!

SAD

My title is sad, because that's how I feel today, I doubt the wet, cold weather helps, but it's more than this, my health problems, with walking being so painful causing loss of independence and loss of confidence, tiredness I think caused by constant pain and inability to sleep, other problems caused by my health issues, internal problems resulting in stomach pain and toilet troubles certainly contribute to this misery which is my life. I fight hard to keep cheerful for the sake of my family, my husband understands how down I get but I think I keep it from my children and friends quite well, I don't want my kids to worry over me, they have busy lives and enough troubles of their own and I don't want them worrying over me. Hubby keeps telling me to visit the doctor but I don't want antidepressant drugs, I am on enough medication for arthritis pain, high blood pressure, ibs and hormones for breast cancer, I don't want yet another pill to take, I don't want to pour out my troubles to a doctor I don't know well, especially as my old doctor retired and so we changed our surgery as I wasn't keen on the other doctors in the practice. I've never been good about talking things over, British stiff upper lip firmly in place, I don't think I would know where to start. So I write, I've always found writing therapy, even if I write it all down then destroy the document, it gets things out of my system, gets it off my chest, then I destroy my ramblings hoping to destroy the bad feelings attached to them.
I do not want to feel sad, anxious, worried and depressed, I want to join in with life, but feel on the fringes sometimes, with a large black cloud sat on my shoulders.

It is cold on a scooter!

With any  it will get warmer, stop raining and the wind will drop! I am not holding my breath though!!
Normally  would have gone this morning on my scooter but its been so cold and windy I have not felt like it. just put your coat on, your gloves, maybe your hat and go sit on a chair in the garden for twenty minutes or so, you can move your arms but only as   are holding the handlebars of a bike. Don`t move.  cold?? Yes, thats how cold I feel sitting exposed in all weathers on my mobility scooter, freezing aren`t you? Me too.  Now you know why I am bored and fed up!!

Get out there.

With Spring on the horizon, at least we all hope so, its been a long winter, I thought I would share with you all the knowledge that just because you use a wheelchair or mobility scooter it does not mean you cannot get out and about and enjoy a country walk. Well technically I suppose the word is ride but you know what I mean! In our village we are fortunate to have several paths going through woods and alongside lakes which are just fine if you happen to be sitting on a mobility scooter or in a wheelchair and you can enjoy the fresh air, wildlife and countryside around. I have been wrapping up warm as often as I could for the past few months, even wearing two pairs of gloves, and enjoying getting out and about. I often arrive home frozen with numb fingers and very red ears but its worth it to blow away the cobwebs! Those "boot scooters", so called because they fold down and fit into the car boot, are very useful to take out and about and as well as nipping round the shops you can use them in the park, along the canal and in gardens open to the public. The National Trust, of which we are members, has some lovely gardens to visit, some parts accessible to scooter and wheelchair users, and at some stately homes you can actually hire mobility scooters which is a great incentive to go there, and very useful for getting around into the bargain! If you want to visit the houses, but your mobility is limited, they are normally very accommodating if you find walking difficult and will offer a chair to sit on for a rest in most rooms so that you can join in and get around the house with everybody else. You will need to tell somebody that you may need assistance, though if you are like me and what little walking you can do is leaning on a stick they will ofcourse notice for themselves and usually offer to help before they are asked. Enjoy :-)