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……

Irritations

Last night I actually managed to stay up until 10 pm, it was the first time for weeks, I’m not sure what made the difference but I was really glad for once to not be running away and leaving Adam just sitting there by himself. The simplest things make you feel guilty when it is out of your control. No matter how I try those are the feelings that I have never managed to get under control, the guilt of not being able to have the life that you and your partner thought was ahead of us and now because of something you can’t do anything about, it has all gone. Once I had been through all the other emotions that having an illness like MS has attached to it, guilt is the one that even 11 years on from diagnosis still manages to pop up all the time. Not being able to work is the thing I feel most guilty about as we have lost a good standard of living to a limited one. If I was fit and healthy I would still be earning a good income and we wouldn’t worry constantly about the bills and the mortgage. I’m not saying it is a feeling that is there every second of the day but it is there and it is an unwanted pain in the neck.

Strangely my lungs were filled again this morning but the worst they have been yet, but when I stopped coughing I actually fell better than yesterday, and my MS knows it too. Spasms in my left shin and tingles in both hands. I hate tingles they are like mild pins and needles but they make you want to scratch but there is nothing that needs scratched, and it does nothing to help either. I remember for years telling my doctor that my whole body was itchy, he of course looked at my skin and there was nothing to see. I am sure it is little things like that that slow down diagnosis, once again it is the use of the English language and explaining to a medic using none medical terms what is wrong. It has been one of those annoying things that of course as it is caused by my nerves, no matter how much I wash or add cream, there is that nasty tingly itchy feeling, some days it is everywhere but it’s favorite location is my hands and my chest and the top of my back, sometimes it has been so bad that I have woken in the morning and I have dots of blood on the sheets where I have scratched through my skin. Although it is one of the minor symptoms on the scale of symptoms. it is probably the one that is just the most simply annoying!

I know that unless there is a sudden change that I am also going to have to start self catheterizing again, I just simply haven’t emptied my bladder for several days and that is a invitation to bladder infections. Some of the MS medics have told me several times that I should do it all the time at least 3 time a day, but I really don’t need to, like many things you learn what you need and how to manage it. I know that one day that will be the final result and possibly more than 3 times a day, but I don’t see the point of putting my body through something it doesn’t need. If it has the ability to do what it is meant to do, even for a short time longer I really believe that I should at the very least allow it to. I have said many times that getting to know your illness is really important and this is very much one of those occasions. The Medical professions do there best to set out schedules that are for everyone, but many illnesses don’t hold to the perfect written descriptions. It takes a few years to learn what your body does and doesn’t do, what will make it easier to live with and what aggravates it but ultimately it is you who knows it best, convincing doctors of that is often a different story. When it comes to medications then you have to be more careful about adjusting things yourself but there are many things that you can play around with and find out what works best for you.