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…..

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.

Physio for the Ego

I had another night of being sick and try as I might I can see no reason. I have had really bad stomach pains for the past couple of days, when you have a lot of spasms as normal it is often hard for me to separate out what is causing what. When they started I realised that I should have taken my stomach meds even though the Doctor said not to until I saw the specialist, I hadn’t been to the loo for 4 days. Meds taken I waited and woke up conveniently at 11pm needing to get to the loo fast, I don’t do fast well. When I woke I felt at the same time as though I was going to be sick but it settled and I returned to my bed thinking that was the end of it, wrong, I was up 3 times more to be sick. This all happened on Monday night, yesterday I felt better as in no longer wanting to be sick, but as the day went on it came back even though I had taken the my sickness meds and I was aware of something else, something that has been going on for a while and that was I was craving cold, not room temperature but cold drinks and foods, looking back that has been happening for a few months. I don’t feel thirsty or hungry what I want is ice cold things in my stomach, I just hadn’t thought about it. So here we are on Wednesday morning and I still have spasm/cramp pain in my lower abdomen and sharp in the upper, even with the cold stuff I keep adding to it. I haven’t actually eaten a lot nor am I going to until it settles and I have decided I have to call the Nurses tomorrow morning if there is no change.

Today though is going to be about me! I haven’t dyed my hair for about 3 months, Adam usually helps me but I want to try myself, I know it is probably a silly thing to do without him here but I want to and I am going to. Silly things that other take as normal daily/weekly or monthly activities are not easy to deal with but sometimes I feel I have to challenge myself and see how I manage. I feel that setting challenges are important to me, sitting back and saying I can’t do it is just not acceptable unless I have tried it, or something similar recently. My challenges are normally something simple and something that if it goes wrong isn’t likely to cause me major issues, as in climbing a ladder is a no no, the outcome would probably be broken bones, dying my hair isn’t going to kill me.

Although my hair is part of my self-image that all would understand, these challenges are about much bigger self-image situations. I know I am disabled but I know there is a huge range of conditions with in that umbrella word, and like anyone my self-image is important. Looking in the mirror is one thing, feeling good about myself is another, and it is the feeling good aspect that is important to all, disabled or not. When you let life tick over, accepting 100% everything that happens to you, then you coast, and when you coast, well your self-image is slowly damaged. I believe that it is more important now for me to be happy with myself than ever before. Before I had work and work colleges, people I saw daily and to whom my expertise was important, as I enabled them to do their jobs and earn money, sometimes they even thanked me for it. I have found a wonderful network of people across blog-land and Twitter who have made my life better in so many ways, but I can’t see their faces or read their body language, and that is often the greatest way to know how someone really thinks about you.

Now I have just myself and Adam who can fill that roll, like all husbands sometimes he will say something about what I have done or how I look, but my self-image has to now be lifted mainly by myself. If you saw no one for 6 months, how do you think by the end of that 6 months you would look like and feel? I suspect that like me, you would stop worrying about your appearance so much. When I became housebound I had just one good hand, so hair and make-up couldn’t be done and I stopped caring, I didn’t start until the last few months to do anything about it and I feel so much better that I now know it is important. I stopped pushing myself to do anything and let the world and everything in it pass by as I was no longer part of it, my self-image was at zero. It has taken months to pull myself out and I now know that not caring isn’t the answer. I had let myself worry only about what was inside me rather than what was outside me, wrongly believing that my surroundings and my appearance and my physical capabilities didn’t matter and they did.

I am sure that Self-image will mean different thing to each of us, but what I do now know is that it is effected by a million little things and only you can tick the boxes that fulfill that image. If you stop ticking them as I did, and don’t think that because today you can’t add a big bold tick, you might be able to tomorrow or next week. I have also realised that the boxes have to change over time, but you have to have them, if you like, you can view it as physio therapy for the ego and we all have one of them. They say vanity is a sin, well I can see that, but when you are housebound and you see only one person each day, who is going to fulfill the human need of approval.