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……

Building a desirable future

After my internal expedition in my wheelchair, I was left with much to think about and even more to do. There are more problems than I expected and I know without a doubt, many of them will appear petty and even silly, but as I have said before, if you don’t get things right, they will pull you down and down. I am not prepared to just sit back and let that happen. It appears though that I am the only person on this planet not prepared to land up being reduced to a baby, just because my body is failing.

Just after I had put my wheelchair back in the cupboard, I sat here and started searching online for those essential items for transporting food and drink from the kitchen to here. It didn’t matter what site I entered the solution to an adult not being able to carry a crystal glass from one room to another, is nasty looking capped plastic mugs that I personally wouldn’t actually be happy giving to a baby to drink from. I remembered when Teressa was tiny that I had the same problem back then. She did have a sipper cup for a few months, but I as soon as I found a lidded beaker that meant she was drinking in the way anyone would from a glass, the sipper cup was thrown out. To me as an adult, I don’t see why I should either want or accept to being forced to use items that would reduce me to an even lower level. I have always had this nightmare image of being in hospital with someone trying to get me to eat some kind of mush of a plastic plate with a plastic spoon, then trying to get me to drink out of one of those cups. Be warned world, I’ll starve and die of dehydration before I let either happen.

When I was building my cocoon, one of the things I did was to fill our kitchen cupboards with the best china and crystal I could afford and in volumes that most people wouldn’t even consider. Right now if I had a table big enough, I could set places for 24 people, for at least a three-course meal, including all china, cutlery, water & wine glasses without having any gaps. I didn’t buy it as I intended to do a lot of entertaining, I did it so that we could eat off and drink from quality items. Items that all matched, looked good and would last us both through the entirety of both our lives, a possible 60 years or more, without having to buy anything. Things do get broken, so if I worked it out right, when Adam is in his 80’s, he should still be about to set that same table for at the very least four, if not eight. That way the dishwasher won’t be on all the time. Having said all that, I don’t intend to be the person who manages to break the most of it. I am going to have to find a system that means I can still enjoy and use what I bought, even when Adam isn’t here to carry it around. I have worked out that what I need is a ferry system. A soft bag to place on my lap that I can connect to the chair so it doesn’t slip then I can take the dishes, plus a lidded container for transporting even hot food in safety. For liquids, well I need some sort of bottle, that I can decant from the large bottles in the fridge to refill my glass in the living room. All of which I have to find and buy, and yes, they will all have to look good.

Why does it appear that just because you are disabled and fading, that we aren’t allowed to have taste and dignity? I may turn into a dribbling wreck, but I will still be a person with taste and style. Yet it appears that practicalities are the only consideration, the word “design” is only there in its loosest form. It can’t be that hard to make a glass with a lid that is actually made of glass or better still crystal. The world doesn’t have to be moulded out of the cheapest and nastiest plastic that’s available. If I am unable to hold a glass, then yes I will have to use a mug. I have without difficulty found a crystal mug, they are out there, but one with a lid? Of course not. There is some weird assumption that the fact you can’t hold a glass means that you will drop a mug, so it has to be unbreakable. I fully understand the two handles, that makes sense, but if I am able to hold two handles, I am most likely to be able to not let go with two hands at exactly the same moment. The unbreakable part doesn’t compute. I have already dropped my crystal glasses on odd occasions, oddly enough because I live in a normal home, the distance between me sitting on a chair and the next surface isn’t enough to break even crystal. That next surface is also most likely going to be soft. As in me, cushions, mattress or carpet, not concrete or stone. Believe it or not, glass normally bounces. I can see that plastic might have the weight advantage over crystal, but not over normal fine china or glass, so that doesn’t compute either. Finally, if I am not able to hold a mug, then someone else will be holding it for me so every argument they might raise, has gone. The issue of the sipper cup is just an example, but one that I have blown apart, just as I can with almost everything else I have also seen under the heading of aids.

Look at everything that is made for the disabled and the word stylish, elegant or beautiful can’t be attached to any of it. Why is that? I’ll tell you why, firstly we clearly aren’t a big enough marketplace to make it matter. Secondly, it is the outdated perception that the disabled are incapable of thought and don’t actually matter. Pat them on the head and tell them it was made especially for them and they will be happy and if their not, well they should be. Well we aren’t. Annoyingly I have come face to face with that attitude first when I was working and even worse, from people within the NHS. I know that I’m not alone as one of the things that my searches turned up were blogs, blogs from people just like me, have had enough of been treated like brainless tenth class citizens. There are a few companies and they are a very few, that are trying. Unfortunately, they are trying for the younger element amongst us, sorry but I have no desire to be using anything that has fluorescent colours on them. I can see those aged up to their mid to late twenties really loving them and those in their thirties and early forties saying they do, just because they don’t want to appear stuffy, but the rest of us, I am sure the numbers dwindle rapidly. All I am asking for is simple elegant design, items that wouldn’t appear as totally out of place in my home or any other “normal” home. Why can’t they make grab bars that aren’t thick clumsy white plastic coated monstrosities, elegant and fluid sinuously shaped chrome would do exactly the same job, but with style. Is that really too much to ask for? Chronic illness and disability may make us feel as though we have somehow become aliens on an alien planet, but personally I don’t want to look or live like one.

I remember touching on this briefly twice a couple of years ago when my new perching stool arrived. It’s standard NHS, white frame with a brown plastic seat, clumpy and unbelievably ugly. As ugly as all the other things that the OT’s have tried to force onto me over the years, including their so called “flesh coloured” braces. I admit my life might have been made easier if I had accepted all they offered, but the damage it would have done to my emotional well-being would have more than undone any good. I haven’t given up on finding what I am looking for, but, and this is a big but, it is going to have to be done in small sections. Yesterday, I found myself becoming more and more frustrated by what I was looking at. From what should have been simple aids, right through to the most major one like hoists and all other equipment that would require adaptations, all of it was ugly and so unnecessarily. I found myself getting more and more frustrated and wound up by it. I even screamed at the PC at one point as I couldn’t believe what the outside world was trying to force onto me. I spend my life trying to stay calm and placid, this entire process is anything but.

Clearly I am going to have to break it all down, starting with exactly what needs to be done to make it possible to use my wheelchair here in the flat. I don’t know exactly how long I have until my legs won’t want to carry me around at all, what I do know is I have to get this done before I’m stuck in my chair struggling.