Looks hurt

One of the most common things I hear is that chronic illness is cruel. I totally agree with that statement, but it is always in reference to the major things, the things everyone knows about. To me, the cruelest things that it does to us, are the ones most people don’t even know exist, like the subject I chose for yesterdays post. It isn’t the symptoms, it’s more the side effects if you like, that normally quietly hurt us the most. As on top of all those horrors, they present to us in lists, are things that present themselves firstly and often only, to us. I had read a post from someone else about a week ago, sorry if it was you that wrote it, but I can’t remember who you are. Within that post, they had noted that their hands were looking aged. So I did what we all would, I looked at my own hands. To my horror, they looked as though they belong to someone at least 10 to 15 years older than I am. Normally, I wouldn’t look at my hands unless they were causing me pain or one of those odd sensations, that we all know about but have no reason. There they were, two aged hands, with skin that looked almost scaly and wrinkled, were there right in front of me. I held my left hand up to the light and there was no denial, it was the hand or an old woman and worse still, it was quite firmly attached to me. I pinched an inch of skin across the back of my hand, then let go, it did snap back to its normal position, instead, it sort of slowly morphed into the space it covered. My hands are old. Of course, that leads on to just one question, does that mean I am old? No, it doesn’t. Well, I don’t think I am, I recently turned 55, that isn’t old in my book.

It was about a year ago, that I first thought that I was heading into premature aging. There were odd things that I had noticed back then, not just the way I now walked, but there was the aura of age when I looked in the mirror. At the time, I wrote a post, which of course, I can’t find now. I had done some checking on the web and I had found that it seems to be a somewhat normal thing to happen to a lot of us who live with chronic illness. When I wrote that post, I was mainly writing about the fact that I felt that my life was that of someone so much older than myself. In fact, I felt that I was no better off than many people in their late 80’s and 90’s, so finding that my hands are doing their best to reach that age at speed, is distressing, but expected. Just because I am housebound doesn’t mean that I don’t care about how I look, I care now, just as much as I did when I was 30. But there are no two ways about it, my health, the medications I throw down my throat daily, are now taking their toll, and not just on my hands. The bulk of what I care to ignore is hidden beneath the loose clothing that I wear, but without feeling stupid and wearing both gloves and a balaclava, I can’t hide the rest. A lot of people would quite wrongly translate the fact that I don’t wear makeup as someone who has either given up, or is depressed. Well, I for one can say that that, is so far from the truth.

The facts are quite simple. I don’t have the energy to spend time in front of a mirror trying to draw lines under your eyes, with hands that shake so much, that that line would be a squiggle. My eyesight in my right eye is close to useless, so when it comes to eyeshadow, my right eye will look great, my left, so far from it that it was often quite comical. Being a perfectionist, if my make up was anything less, it meant that I just took it off again. There is only so many times you find yourself in that position before, you quite simply stop trying. It quite simply isn’t worth it. Not just because of what I have just told you, but I have so many things these days that I can’t do, being reminded of another one daily due to something as unimportant as makeup, is something I really don’t need. Just as I have given up cooking, not just for my own safety, but for everyone who lives in our block, doesn’t mean I’m depressed, nor does stopping wearing makeup. I wish I could get my mind around that odd connection between depression and makeup, that far too many people seem to have. If I’d given up, I wouldn’t cleanse and moisturise my face every day, in an attempt to hold off some parts of this horrid ageing process. To be honest, if I had the money and if I could find a plastic surgeon mad enough to give me an anaesthetic, I would without a doubt have the full range of operations available, to remove every sign of ageing there is.

Just because we are ill, doesn’t mean we don’t care, I care deeply, but what can I do about it? Nothing. If anything is depressing, it’s that. Seeing yourself slowly falling to pieces and turning into something you never thought you would see, would pull anyone down. It is, though, like everything else in our lives, we have to either learn to ignore it, or to live with it. I suppose that it isn’t really that surprising that this is happening now. My PRMS has stepped up a gear, I have less energy, in fact, I have less everything than I had just even a year ago, so to find I am ageing faster as well, should really be something I should have equally expected. I guess it’s like everything else, just because I was aware of the possibility, I had it marked down as something else that happened to other people. Well, we all have to have a little hope, but that hope has run out on this one as well. It would be really nice if just for once, that hope would win out. Chronic illness is cruel, but so can life be, it’s up to us, though, just how we are affected by that cruelty. I have got through so much that I doubt this is the one that going to get the better of me, old or not, my hands still work, well, sort of, and as long as they do what I need them to, I can turn a blind eye, to how they look, for now.


Please read my blog from 2 years ago today – 05/05/2014 – That old issue of money

Once again my legs are really painful this morning, I woke as I often do for some reason with my right foot not in the bed, but on the ground. Why I keep doing this I don’t know, but I am now guessing that when I am asleep I somehow don’t have the strength to pull it back in under the covers, as often it is freezing cold and painful when I wake. It only started happening a couple of years ago, never in my life have I been aware of it before and I really don’t think that for some mad reason, my body has suddenly decided it’s a good place to put it. That might explain some of the pain in that leg, but it has no bearing on the other one, which was comfortably tucked up and warm all night. I have to admit the whole house is cold today, the temperature dropped suddenly on Thursday and since them, well there has been little improvement, I refuse to switch the heating back on, as it is now far enough into the year to not be spending…..

It isn’t vanity

There is a dangerous item in every home that we don’t even think of as dangerous and it’s in yours, right now. From where I sit, I can see four, but it’s isn’t them that worry me the most, it’s the one in the bathroom. I made this mistake this morning. It didn’t seem much when I did it at first, but the closer I got, the worse it got. I suggest strongly to everyone out there, get rid of your mirrors, they never hold anything other than bad news! I was brushing my teeth, when suddenly, I spotted there was a gap in the eyelashes of my left eye. I moved closer to the glass and yes there it was, a gap, but there was something even worse, to be seen once that close. My eyelashes are about a quarter of the length they were just months ago. I put my finger up to check and what I felt, was even worse than it looked, they have simply vanished. I had to almost touch my skin before I located them, short stubby and odd. Not wearing make-up, means I don’t look that much at my face. The last time was when I went to the hospital, one month ago, and I wasn’t aware of them being radically different just four short weeks ago. I always put on a small amount of make-up when I do go out, just a fine foundation, some powder, eyeliner, and mascara, so surely I would have seen it then. I remember seeing nothing odd at all. I know it is something that happens with old age, but I can’t have aged that much in a month, well just a month clearly, but can such a short time, really do so much damage? If there was any fairness in this world, once you have to live with a chronic illness, we should be given the bonus of not aging. I hate mirrors!!

My mother has accused me all my life of being a vain creature, in some ways, she is right but in other, she couldn’t be more wrong. To me, vain people are always checking how they look, constantly stopping and touching up their make-up and hair. Those women, who carry handbags the size of a small country, that are stuffed with more cosmetics than I have ever even owned at one time. I’ve never understood those bags, what is it that they need so desperately when their not at home? I never even carried a comb or a brush, my handbag was just big enough for money, keys, lighter, and cigarettes, what more did I need? Makeup went on when I woke and came off, just before bed and not even then sometimes. Yes, it was precise and dramatic, but it didn’t require constant touch ups, it just stayed there, perfect. Well applied good quality makeup, actually does last all day, even lipstick. My mother thought me vain because I had to look different, and I had to look eye catching. If people didn’t look, I knew I had got it wrong. Well, why blend in, when you can look spectacular. I had planned an old age, where short eyelashes wouldn’t have been bothered me, as everything else would have screamed who I was. When you are diminished by your health and your plans are gone, it would be nice if there were the odd compensatory points, like, not losing your eyelashes.

Whether you are vain, spectacular, or just have a need to take Luxembourg with you where ever you go, what our health does to us, is going to have an impact, not just on how you look, but how you feel about your looks. There is this double whammy, as it isn’t just the medical kickback of things like gaining weight or muscles withering, there is the psychological one as well. Personally, which is where my mother might have been slightly right, as it was what it slowly did to my looks that I found far more upsetting, than what the doctors saw. Like any woman, I like to slim, not madly, just around the correct weight for my height. So when I found myself unable to eat and my weight plummeting until I was almost skin and bones. The fact that I was a size 8 and only weighed just over 7 stone repulsed me. At first, I quite liked the weight drop, but when I could see almost every bone and looked more like a second world war refugee, than a 21st-century woman, I hated it. The answer was a bright yellow tube, slung across my face and down my nose, there 24/7 for 3 years. Not a great look either. Right through that period it was my well-honed ability to use bravado, that got me through much of it. Everyone around you is so concerned about the medical effect, no one asks you how you are coping with looking like that. How you feel about your body, or the impact it is having on everything else.

The truth is, like it or not, we are all vain. If you own a mirror, you are vain. Whether it is major weight loss or my now problem, weight gain, if it isn’t done by your choice, but by your health, it is going to have an impact on you. Doctors, they fuss about what it is doing to our organs, our life expectancy and so on. We are just left looking at a person in the mirror, who isn’t us. I’ve joked about the luck of having poor eyesight these days, but no matter how blurred, you can’t miss what is happening to yourself. Some muscles become weak and waste, others have this nasty habit of turning to flab. You can’t exercise, despite the fact you used to every day for hours, now you’re this blob, and worse still, you have to age on top of it. Your wardrobe is filled with clothes that somehow, are never in the right size or style for where you are going, and at a time when spending money on clothes, is low on your list of needs, you constantly find you really do need. Over time, your entire body shape changes. Once you are in a wheelchair, it happens even quicker. Then clothes have to be stretchy, to allow for a whole new range of A typical movements, that other people never make. Making yourself look good, is hard, to make yourself look like you, or the you, you want to be, almost impossible. Life on medication seems to change not just your symptoms, but your hair, nails, and skin. Just like your clothes collection, your range of creams, serums and lotions keep growing. Nothing is how it once was.

It doesn’t matter who it is you talk to, doctor, nurse, OT or physio, no one once asked how I felt about the cosmetic changes my health forced on me. No one even mentions all those changes you can’t avoid, or if you are coping with seeing someone you don’t know looking back from the mirror. Health doesn’t just have a medical impact, it has a life impact, and our appearance is all part of it. I don’t believe it’s vanity, or something that doesn’t matter because, I know, it does matter. How we feel about our legs, doesn’t end with how we feel about the pain, or if they can still work, it includes how they look to us, and how we think, they look to others. The appearance of every part of us matters, and there is a nasty truth about illness, it will never stop changing all of it. Chronic illness usually turns up in our lives just about the same time we really start to age. Most appear in our late 30’s and later. On their own, they are bad enough, throw in aging, and well, no one can win. I’m 53, but my body is in the condition that I thought it might be, by the time I was in my late 60’s. I have gone from someone who everyone always thought right through into my late 30’s was at least 10 years younger. Through my 40’s, it got clipped to 5 years and now the table has turned. Facially, I’m probably about right now, but all of this I put down to my health. My body clock is in hyperdrive, and there’s nothing I can do about it. Vanity, I think not, I just want normality back, but it’s gone.

Illness does a million things that we don’t expect, this is just one of the many, that no one warns us about or helps us to adjust to. All things accounted for, I don’t think I have adjusted too badly, but for some, I can see it could be devastating, so why the silence. Forwarned isn’t alway forearmed, but at least it might stop it being a shock.

Please read my blog from 2 years ago today – 13/10/2013 – Relief, resistance and renewal

I managed to sort out the adaptations to the bedroom, it was actually a lot easier than I thought it would be. I unfortunately now have the top draw of the dresser beside the bed slightly open as it allows me to hook the controller for the matters elevator onto the side of it, easy enough to reach but making……


To my surprise yesterday afternoon I had not one but two phone calls, our phone seldom rings as being ex-directory and on the Telephone Preference List for over 15 years, we are not bombarded by nuisance calls. I am so glad that I have been working on getting rid of all companies that think they have a right to call anyone whenever they want, not even companies I have accounts with call, mail or even email me as I have kept everything as tight as I can against it ever happening. For our phone to ring, it has to be someone who knows us, the first one I answered without a second’s thought as it the display said it was my doctors and as I wasn’t expecting them to call, I was a little surprised. It was the receptionist just making a call for me to go in for my flu jab, despite the fact I have had asthma for years and now COPD, I haven’t had the jab since I became housebound, so I was a little surprised by the call. I explained that I was housebound to the receptionist and that I haven’t had the jab for years and she seemed a little flustered as to what she should do, but said she would tell the district nurse, then she hung up. I am guessing that I will hear no more about it as I vaguely remember a similar call about 6 years ago, I think that it is my recent diagnosis with COPD that has put me back on the list. It left me wondering about why no one has come out to give me the jab as both Asthma and COPD are equally reasons why I should be protected against the flu I may not be out there able to pick up the illness, but people do come here and any of them could pass it on to me. With Adam working at a hospital he is given the jab routinely so that access should be closed, but not all are. I will wait to see what happens, but I am beginning to get the impression that just maybe because I am a quite patient who contact them rarely other than for my repeat prescription, that some of the things that should be done, like taking my blood pressure every three months due to my being on HRT, taking a swab of the ‘thing’ before referring me to a hospital and the flue jab, are just not being done because someone would have to come to me.

The second call I had, well that one is much more straight forward, it was from the department that look after the bed elevator, they come out every now and then to just check that everything is working properly and that it hasn’t suddenly developed a fault that might cause a fire or something. It took them about 20 minutes the last time they called, but I have to say there is something un-easing about a total stranger being in your bedroom, fiddling with something under your bed. In fact he has just arrived and is through there right now, at least unlike the last one he didn’t start moaning about the fact that we have very low lighting in our bedroom, I have never seen a reason to have strong bright lights in there, it isn’t as though you need it for anything? Most of us know how to get dressed in the dark if needs be, so why have spotlight level brightness? Personally, I can’t actually remember the last time, other than for workmen that I have even turned any light on in there, I stumble and wobble my way in to go to bed and stumble and wobble my way back out, lights don’t help in that process at all. He just called for me to go through and sign off that he has been here and has now gone, he was only here for about 5 minutes, it leaves me wondering who did their job as it was supposed to be done and which one is swinging the lead? Getting up and down twice in a such a short period of time has done nothing that was good for my legs, they just don’t know how to deal with it.

We all take standing up as a simple act, one that we do without the slightest thought, well that slowly goes away as time goes on for all of us, which is why it is one of the parts of PRMS that leaves you feeling old before your time. I am just 53, if you ignore knowing that fact, my long purple hair and any other clues to my true age and just watched how my body works over a day, I have no doubt that I would fall into the age group of somewhere between 65 and 85, well some are more sprightly than others. If I were to base it against my grandmother who died at 86, she was more agile two weeks before she died, than I am today, chronic illness doesn’t just steal your health, it steals your life and your age, doing so with far to much ease. Just letting someone into and out again of my home has left me with thigh and calf muscles that are burning from the excursion, I haven’t run a mile, or walked 5, just a mere 20 yards at the most. When I fist sat down again my lower spine when nuts, throwing 3 fast strong spasms at me that shook my body as though I was a marionette on strings that were being tugged at violently. They didn’t hurt me, the pain that should have been there covered by the drugs I live on, they just throw me around a bit, leaving me glad no one was there to see it, as I know it must have looked rather odd, I guess it always does.

I think all of us find it hard to age, watching the odd grey hair turn into hundreds and fine lines into folds, to put on the years that time has lined up for us though is one thing, having them torn away is something totally different. So OK PRMS hasn’t made me go grey any sooner than I would have, but I stopped worrying about that when I found a three long grey hairs on my daughters head when she was just five, but it does change your skin, remove your muscle tone and make everything head north prematurely, with no way of ever dragging them back. It’s not like I can just start doing exercise and work the muscles back to how they were 10 years ago, I can’t even manage to loose any weight, as weight comes with every year you spend sat down and weight alone is ageing. Ageing faster than others isn’t something that we can avoid or change, it is also something that no one tells you is going to happen to you. I know that if I had know in advance that it might have changed little, but I might have made more of an effort to do the right things that bit longer, pushed myself to exercise that bit more when I still could have. Ultimately would I have really changed much, I don’t know, but I would at least have liked to be forewarned and given the chance to try.


Please read my blog from 2 years ago today – 17/10/12 – Decaying slowly

I have tried for the past few days not to write about or dwell on the pain that I feel in my legs, it hasn’t gone away but I was trying hard to distract myself in the hope that its impact on me would be lessened, it has made no difference at all. I suspect it was a stupid idea but well even……

Time jump

I woke this morning with the really odd and somewhat disgusting trail of semi-solid gel drips in a line from the ‘thing’ in my mouth that had formed a scab, to the back of my mouth where the other ‘thing’ is. When the scab fell off I thought that the hole it left would just heal over slowly building the layers until it was flush with the rest of my hard palate. It seemed to be doing just that, yesterday morning though I began to wonder as when I touched the tip of my tongue to it, it felt sort of spongy, as thought it was filled with fluid, it was and it burst when I was eating lunch again, the hole was exactly the same as it was a couple of days ago. I had taken a look at it just before lunch and I could actually see that it wasn’t right, so when I found the hole, it all made sense. Because I sleep the whole night on my back, I guess it had been weeping rather than scab forming but the liquid was turning slowly solid and that was what I found. The hole itself is once again feeling as though it is filling and healing, but that was what happened when the scab left, so I’m not holding my breath. It’s now over two weeks that they have been there, if they are cankers, which I can’t see how they can be, as I have never had them before and all the articles say you have to have had them by your mid-twenties, which I hadn’t, to have them later in life. They are also not meant to appear on your hard palate, the first place I found one, but if they are, they take three weeks to heal, so I will see what happens over the next week and if still here a week from today, well I will call the doctor on the following Monday.

My body really does seem to have an art of doing all the things it shouldn’t, I have lost track of the number of things that I read that say something or other shouldn’t be happening either because of my age, or because I haven’t had some other illness that are meant to be the trigger. To be honest, part of me now reads everything with a huge dose of scepticism, including and especially when it comes to all the medical sites and books. I will just correct that slightly, I don’t have a huge stack of medical books, I used to have two when the kids were little, simply because not living anywhere near our families, I didn’t have the granny to take them to, just to check if it was a rash to worry about or not. I was at that time also in the beginnings of my MS, when the doctors failed me over and over, I did turn to the books, now I don’t remember what I found in them, but I do remember scaring myself to death several times, convinced that I was going to keel over any second and die. These days I only use a couple of medical sites online, going off piste when they fail to come up with the detail I am looking for, but to anyone who want to use them, correction as I know without a doubt that if you are reading this, you use them, make sure when you do, to do so with care as 99% of what you read, will have zero to do with whatever is happening to you that made you go there in the first place.

I have had to for my entire life put my age on the shelf, everything from puberty onwards seemed to happen when it shouldn’t. I was 8 by the way when my mother had to take to buy my first bra and everything else seemed to follow closely behind, my body has done and gone through everything else at full speed. These days although I am just 53, I feel so much older and at times I don’t know if it is because of my mad body or my mad illness. Chronic illness makes you old before your time, like it or not, all those things you thought wouldn’t happen until you were old, really old sudden start happening when you are too young to even consider them possible. There is a grieving process that belongs with finding out that you are ill and that your health means that things will never be the same again. I only realised recently that one of the things you are also grieving for are all the years you will loose, not of the end of you life, but out of the middle of it. I was 40 when I received my diagnosis, Adam and I had been married for a couple of years and we were in the middle of decorating and remodelling our home and we were so happy that life looked as though it could be nothing but roses all the way into the future. I in the next 2 or 3 years, aged physically by over 30 years, I was in a wheelchair when I was just 44, with no energy, no physical life to me and suddenly in just a handful of years equivalent physically to those well past retirement. Take the word illness out of the equation and I am equal to someone in their late 70’s or even 80’s. I lost my health and I tried so hard to live as the person I should have been ageing in a normal fashion, without understanding fully that losing your health means losing a huge chunk of your life, it is a time machine that jumps you forward and forward, stealing everything that should have been in between. I’m not sure why I never looked at it that way before, but I didn’t, I only saw and thought about the health issues, I had it in my head that I would continue as I was just in more and more pain and less and less mobility and mental agility. I saw it as losing years of the end of my life, not as losing years in the middle of it, when in truth that is what happens. I am 53 right now, but I don’t know what it is like to be someone in their 50’s, regardless what it says on my birth certificate, I only know what it is like to be in my 70’s or possibly slightly older.

Read my blog from 2 years ago today – 30/08/12 – Learning into the Future

Sometimes I am not as quick on picking up on something as I like to think I am. Strangely this has been on of my beliefs for many years but I realise that it is actually as important to surviving chronic illness, as my belief that you have to keep achieving, for those who don’t want to write or don’t have the space or funds to set up a hobby that requires more component than a PC or paper, at the……