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……

Changes

One day on and I still don’t remember what I was so desperate to write about yesterday, but last night I went through the identical strange sensations apart from the wriggly thing, that didn’t happen. I have to admit I did find myself wondering if I had some sort of worm, clearly I have watched to many of those documentaries about the strange things people have inside them. I suppose we all think strange thought when strange things happen.

I have been tracking the pain, numbness and spasms in both my hands now for a few weeks as I have mentioned recently there have been a lot more pain and numbness going on. I am in no doubt that they are getting worse over all, not just in their peaks but over a whole day there is a clear progression showing that they are really getting worse. I have noticed recently as well that they are showing more and more signs of what I suppose is withering, they now have that look of being thin and weak, especially from the elbow down. I wear two layers of clothing over them, so it is really only when I have my shower that I really get the chance to see them, the other day I actually stopped and stared, as it hadn’t registered before. I have for many months been able to see the same had happened to my lower legs, but neither I suppose were unexpected. It isn’t just the fact they aren’t used a lot any longer but it is also part of MS it withers muscles. It’s kind of strange though to see, as I have ample fat around the trunk of my body and these rather strange thin dangle things by my side. The same fat cover is still clear on my thighs and upper arms, but the actual muscle tone and bulk is getting less as well. It is now easy to hold onto the fat layer as though it is no longer attached to the muscle below.

Looking at myself these days in a mirror isn’t something I do a lot of as I have lost totally the person who was there just 10 years ago, well to be honest just 5 yrs ago. Being housebound has destroyed how I look and it is rather hard to accept that no matter what I do, nothing looks any better. Logic alone should tell you that no exercise means no muscle tone, but I have always been a really active person, a bluebottle and I were well matched according to many people that I knew, now it feels more like a slug. All of our bodies age and we can’t stop that, but illness speeds all of that up, there are no real exercises I can do, even the simplest cause more pain and fatigue, and it’s hard to make yourself do something that might be good for you long term, but bad at that second. All your life you have worked on the logical system learned in early childhood, that if it causes pain, it is something you shouldn’t do, I am inclined to continue using that logic. I saw the MS physiotherapists about 4 yrs ago and she said there was nothing they can do to help me any longer, part of me wants to prove them wrong and part of me says they should know what they are talking about.

I know from seeing others who’s illness has progressed further than mine, that the impact on how I look has only just begun. I have seen so many frail and withered people who at the time I put ages to, that I know see was probably totally wrong. It’s just another thing that MS steals from our lives, I could make jokes and say well at least my memory may fail me bad enough that I might forget seeing it at all, or brush it off with well on the scale of things does it really matter. Ask anyone if this happened to them would they be comfortable with it, male or female I would expect the answer to be no. I do at times worry about the future and the fact that so much will be out of my control. Adam will eventually be responsible for my appearance, he will have to do silly things like dyeing my hair, which is very long, having to wash it and sort it the way I like it. He will have to know how to put on my make up when someone is coming to the house, to dress me and some how to do it all the way I like it. They may all be small things, but our appearance is a very personal and important for our own well being, and something I think will be incredibly difficult to hand over to another, even if that is someone I love and trust.

Disabled Different?

John went back to the US last night, I think it was a very long day for all of us as we all felt helpless. Teressa is devastated, something that is clear by her pleas to her friends across the world on Facebook. Due to her traveling life she has gained a strength and ability to cope, with long distance friendships which right now I am glad off. I normally just read her Facebook as I see it as a link but one that in normal times she doesn’t need her mother getting involved in, but I felt a need to add to it for the first time yesterday and did and again this morning. Some of you will have noted the unusual spelling of her first name, not the spelling that I gave her but one that appeared in her late teens and has remained and I respected as it is her choice. Today she appealed to her friends as she has already had problems with the difference between her official documents and some bills and letters, I couldn’t resist…. ‘As the person who gave you the name I think you should go back to the original not Teressa, but “TERESA_JANE”!’ I know she doesn’t like the double barrel first name so I couldn’t resist it, knowing it would make her blush with everyone else now knowing, I did go on to give advice and add that it could have been worse I could have told the world her middle names as well. She knows my sense of humor well and I just wanted to lighten her mood for a minute. It will now be months until the two of them can be together and my heart goes out to John as in someways he is in the worse position, no job, no home and no Teressa, she at lease has the other two already and starts work on Monday so it will help to keep her busy.

On my other blog today I posted a very short piece simply called ‘Different?’, it is part of my ‘Dazzle’ posts but as I was writing my brain was running thorough instances in my life were my own experience and feelings linked, unfortunately there are too many for my to put into any single post but two made me want to add them in here as they may well have meaning to you. I have always in my teenage years and since I left my first husband preferred a more dramatic and individual style, in the late 80’s I started having tattoos done,this was long before the ‘Beckham era’ so not done, especially by women. All my tattoos to this day are easy to hide should I wish to but they are extensive, both arms from the elbow up, my full back, shoulders and two panels at the front and a few on my legs, I hadn’t actually completed them when my MS stepped in and change the nerve sensations increasing hugely the pain, I couldn’t predict if I would manage to have 2hrs or just 2mins of work done. I was and ma proud of them and went out most of the time with them on display, my hair has varied in length and style but again dramatic in all my choices, of colour and accessories, all combined by strong dramatic make-up, 53 earrings in one ear and a nose piercing. Being tall for a Scot at 5ft 9ins and dressed in black in clothes I never saw anyone else wear I was, when I walked down the street I was to say the least obvious, and the reactions varied wildly.

What got to me slightly was the change I saw in the winter when I went out covered-up to the summer. Winter yes there were reactions some stared a bit, others smiled, but in the Summer it was nuts. If all my tats as far as possible were on show and I added high heels people got out of my way, the path in front of me widened, as they physically moved as far away as the pavement would allow, many looking at me with a touch of fear. I never asked what was wrong with them and it is only my guess but I felt as though they thought that any second I might draw a knife and attack them. Why? I can only think of the way the media portrayed anyone with tattoos as a monster, who would kill you as soon as look at you. I can also still remember the change in people when I spoke and they discover that I have what most call and educated Scot accent, I went to private school and had elocution lessons so I sound a bit posh if you like to call it that.

By the time my illness took over and change my physical movement I was aware again a of a change, at first the assumption I was drunk and the disgusted looks I received. When I gave in to the walking stick I was treated probably in the most normal way regardless of my other appearance that I have ever had, but then came the wheelchair and with it pity, at that point I was working in an office so Monday to Friday pity followed me around, at the weekend I dressed as me and suddenly I got respect, genuine help and assistance and for once as a human being.

I have put a lot of thought into why? What causes all those reactions to just one person and all I can come up with is social acceptance of difference. I am the same person but I have a much wider view of what the world sees and how they react. Being disabled and sat in a wheelchair in a normal long black coat is an accepted look but the chair made me into a person who received pity and I hated. Anyone out there that uses a chair will have seen it and it hurts, you are a person who is sat down, a person with the same feelings and abilities as anyone else, just not able to walk. Put me in the same chair with outrageous clothes and tattoos showing to the world and I am courageous, strong and to be admired and helped with a smile. Believe me you don’t have to hear the words from your helper the whole of their feeling show on their face.

I have taken for most of my adult life the looks, the perceptions, the feelings that fall on me and passed all of them off with my head held high, but it doesn’t mean that inside there isn’t pain, there isn’t hurt and there isn’t disbelief that simply your appearance is enough for the world to judge. I am not going to change the world and neither are you but if you are reading this and you too have an illness that makes you different, well my advice is if you have ever had a hankering to wear thigh boots, mini skirt and mad make-up, do it now, it works, it works to your advantage when you least want pity and false help.