Monthly Archives: January 2014

Loneliness

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Adam didn’t make it home until long after I went to bed, I watched Eastenders and headed straight of to bed, with no struggling to stay awake just so I can spend more time with him. I have wondered often how I would live now if I were alone, one of those “what if’s” none of us really want to think about, but I have I suppose mainly because I write so much and hear so many stories for others who are also living with chronic illness. The thought of being here by myself 24/7 is actually impossible to pull off. I would have to have help whether or not I would want to accept it for all those daily tasks every home needs. I couldn’t get rid of the rubbish for a start, nor clean the house or do the dishes that the dishwasher can’t and changing the sheets, well I would never manage at all. Clearly no one with an health like mine could manage any of the practical things, but the more important part of life, that human contact we need, is much harder to replace. I have spent many years living by myself and as long as you have your health and can get out and about, living alone isn’t a problem in any way what so ever. I have heard people saying how long Sunday was or how depressing Christmas becomes, but I never found any of that a problem. I suppose the fact that I see the days of the week as just that days, changes things totally. The majority of the jobs I have had didn’t observe any day as any different, I just worked, without holidays or time off set to any day or time of year at all. I’ve never understood this strange need that people seem to have in this country to not working at the weekend, I actually loved working then and having 2 days off when everyone else worked, I had shops and social spaces to myself, not heaving with people.

Being by myself just hasn’t been a problem in the past, to work through these thought though I have to do one thing, remove Adam from the picture totally. Living by yourself is one thing, living missing deeply another person is totally another story. So I have to take myself back a few years and move forward from there, could I really manage being by myself, unable to go out and about when I wanted, not being able to socialise, go to the pub or out for a coffee, well I would like to think so. I never really was the type of person who had loads and loads of friends, when I did go out, I usually went out by myself. I was happy to go out for a coffee or a pint and just watch people, I would usually take a book with me, not to read but to fend off those who would approach me for a chat. I didn’t need to talk to anyone, or do anything really special or expensive for me to go home happy and feeling I had had a good time. Even when I would stay at home for days, not going out at all, I still never found myself feeling lonely or wanting to get out of there, the stir-crazy so many others tell me about. So I guess that yes, I probably would be quite content here by myself, most of the time, allowing people in to do what I couldn’t as they would supply those brief pockets of time when I would have someone around, if only to say hello, thank you, good bye. I keep hearing on the TV that loneliness is one of the biggest problems of old age, I can only take a mix of my past life, my everyday life I have now, alone when Adam is working and a knowledge of me as a person, I think I would survive and survive contently. I have never really been sure that lonely really exists, I believe strongly that lonely often really equates to bored, nothing to do and no idea of what you want to do. At some point in my life I must have felt it, but I don’t remember it ever happening, I have never been really bored, I always have something to do, something to keep me not just busy but interested. Once I was forced not to work, I found this and a ton of things on line to hold my attention and interest. I put time in to learning more about the history I love, I discovered new interests and daily I now have more I want to do than I have time for. Yesterday I was alone all day I found myself having to force myself to click my PC off button, so I have half an hour sat in front of the TV, then off again to go to sleep. My life is as busy and as fulfilling as it was when I was part of the rest of the world, going out to work and all the things life brings with it, never did I then have time to be bored, I just made lists of everything I wanted to do but didn’t have the time, some things don’t change.

I am not alone though, I have Adam, here every evening and every weekend, he fills my life with a dimension that those who are lonely don’t have, a person around them who loves them, cares for them and makes them happy. For me to be alone something would have to happen to him, that changes what lonely means, I think that is true loneliness, loosing the person you love isn’t about any of the everyday words that get banded about. Loosing your partner is like loosing yourself and how anyone copes with that, when there is no one else there to help them, that is when I start to understand loneliness. Could I cope with that, I don’t know, I have never had to and I never want to. The English language once again fails us by not really having enough words descriptive enough to separate out the different levels, types and grades of loneliness. You can be as busy as you want, have as many people around you as anyone could ever need, but loose your life partner, I believe you would still be lonely and somehow, always alone. I know from my life experiences, that slowly you do start to return to the life you had, so I expect if you were like me, you would head back into a life of always being busy, I expect it would be those hours you spent together at the end of each day that would be the hard ones, but busy might also grow to be a cure for that to.

So could I cope if I were alone, yes over all I believe I would, at least I believe that I would. I am the type of person who has always refused to be beaten and I doubt this would be any different, as long as I am not bed bound, I would be able to make it through every day, constantly busy from start to end, constantly still making lists of what I still want to do in my life, maybe that really is the secret, well for me at least.

Truly care

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I have taken my first HRT tablet this morning, so now it’s a case of wait and see, not just on the hair situation but also to see if I feel any changes in my MS, the more I think about it the more sense it makes that there will be some. Hormones effect everything that our bodies do whether or not we are aware of it, so the logic is clear that some of what has changed for the worse in the last few months, could well change again, all I hope is that it’s for the better not the worse. Adam has gone out for the day, he has headed up to the middle of nowhere, where his mother lives, to spend a day once more being her son and sitting around in a different living room. We went through the normal ritual of him first asking if I would be all right if he went, followed by the same question a dozen times over, before he agreed with himself, that it was OK for him to go. I know that it is all down to the fact he loves me and worries when he isn’t here, but I can’t see why the logic of my being all right day in day out when he is at work, with the likely hood of anything happening to me today, to see that it really is rather OTT.

I have tried many times to put myself in his place, but as we are two very different people it is almost impossible for me to see everything through his eyes, it is actually easier for me to take myself out of the equation and to imagine being him. If the tables were 100% switched I know how I would act and what I would do as his carer, I have never been a worrier, even as a mother I was inclined to react through logic with love, rather than love with logic. I was the kind of mother that if one of my kids fell over I didn’t go all gushy about it, I picked them up, brushed them down, looked for any real problem and sent them off again to do what they were doing. I know that my way of caring for Adam if he were in my position, would be to ensure his environment was perfect and everything he needed was there, but without asking or fussing. Everything would be clean, organised and ordered so that it is calming and relaxing as there would be no reason for him to even feel he had to do something, clean something or even help with anything. I would do my best to pre-empt his every need, by having everything from food to cloths, medication to entertainment, all there, all always ready for him when he wanted it. Just like I wasn’t a gushy mother, I wouldn’t be a gushy carer, I would trust him to be able to sort out problems for himself and to be able to deal with the problems his health brought to him, but ready to help if needed. I wouldn’t be hovering around him waiting to rescue, but I would be listening for a distance for a call for assistance. Adam and I have been together now for long enough for me to be able to see and understand his way of caring, much of which highly amuses me and much often highly frustrates me. I know that his first step in caring is to worry, his second is to worry but ready to jump in and help and his third is to worry, hovering around me then taking over, if he gets the chance. He looks for dangers that don’t exist, he sees that as a major roll, to be the one who removes danger, that danger being a crumb on the floor along the route I might take, to my walking carrying a knife on my plate, to constantly reminding me that things I can see are there. Somehow worrying seems to help him, something I don’t quiet understand but it is Adam, he worries about all the things in life that will never happen. Two very different ways of caring but both with just as much love at there heart.

Some how I have always had this thing about looking at life through logic, which is really rather stupid as if there is one guarantee in life, that is that none of it is logical at all. I know that it comes from my childhood that emotions for me became a minefield that I just couldn’t always deal with, so logic was my way of hiding from them. Right or wrong, I have also tried not to just deal with my life, but my health through logic as well, no matter how ill I have felt I have always tried to find those logical steps of how I got there and therefore what might help me to make it better. That’s why I analyse everything, I have to find the logic, as for me worrying just doesn’t work. Caring is one of those things that I can see becomes a totally emotional process, I doubt even those who earn their living from being a carer can keep emotions out of it. I know we hear lots of horror stories, but I honestly believe that they are the few, who have given the rest a bad name, caring for someone has to be emotional, if you are going to really make someone else’s life comfortable and pleasant, you have to understand them and their needs. I know I would make a terrible paid carer as logic just wouldn’t really work, even my mother said years ago, that she would rather go into a home than live with me, as we would land up with one of us killing the other. It was a joke, but a joke with a lot of truth behind it. I know that I could only ever be a carer for Adam for two simple reason and it isn’t love, it’s down to knowing him and understanding him, those two key things mixed of course with love, would turn me into a carer, but for it to also work for me, I would still need to be allowed to add in my brand of logic to daily life. I guess that may well be the truth behind being a carer, you still have to be you, otherwise it senses to be care and becomes a chore.

How "it" changes

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There are some strange things that I have become aware of as the years of illness have passed, one more than any that you simply forget how “it” used to feel. That “it”, well it is almost everything, from how it felt to be well, through to how it felt to be standing in the snow and feeling each flake touch your skin, first melting and in time settling as you are now as cold as it. Yes I can write that as I know it sounds right, but the true feeling, well no matter how much thought I put into it, the feeling has become a numb nothingness, a great picture with memories of excitement, but numb. Just as we all have brief memories of being a child that are filled with more colour than could ever have been true, the opposite happens to those everyday occasions, the ones that we thought would be reinforced in the future, but weren’t and now suddenly they feel incomplete. Parts of it are down to memory but I think there is so much more behind it when it comes to certain types of feelings and experiences, especially when it comes to the pain and symptoms we lived with in the past. A few days ago I wrote how symptoms become over laid by newer and stronger ones that take there place in any progressive condition, but I also think there is an element that any woman who has had a baby will understand, we simply forget the pain as remembering it would serve only to build the fear of when it happens next. I now believe that that is not just true for pain, it is true for all those things that we do or feel in life, be that physically or emotionally, there is a memory but it actually needs it to be repeated for us truly remember the first time round.

One of the questions that I hate doctors or anyone else asking me is about historic events, such as asking how different things are due to a particulate medication or event. In fact I have a perfect example of this thanks to my COPD. One of the tablets I was given was to help clear the mucus in my lungs, I remember it making a huge difference at first but once cleared, how much it is really helping me now, I just can’t answer, 5 months on I don’t remember just how bad it was. For some one who is out and about, having to walk at speed or even run, they would have great gauges to be able to measure it on, I don’t have those gauges, I didn’t know my lungs were congested in the first place, they heard it not me! Once you are in doors all the time, those gauges that we all have in life become so isolated that knowing the truth of any change, or any memory just gets harder and harder. Just like the snow, can I truly trust my memory, but that is all I have going forward, there will be nothing to add to it. Be it my health or my view on the world, what I have at the very second it maybe needed, has changed.

Having read this back I guess it might be a little difficult for some to grasp what I am saying, but that is one of the problems of living a life so different for the norm, everything becomes just that bit more complex and alien. If it were easy, we would be able to switch places right now without either of us having the slightest problem with fitting in and dealing with each others lives. Living in a confined space, where there is a confined list of possibilities, actually means that even my past experiences have also been confined, as they can’t any longer be built on. I’m not to sure if that is a bad or a good thing really, good for those precious memories as they can’t be destroyed by a future disaster, but bad for those that I wanted to build by repeating them time and time again, like camping on a beach on some point on the Scottish coast line. I guess we all hit this point eventually, the day will come when either age or health will take away those plans of adventure. There are a million adventures you can have in your mind, many people have tried to tell me that that means my life and world isn’t limited, but “it” is.

Everything in life is about experience, experience of sight, touch, feelings, smells, emotions and so much more. Experiences have to grow, they have to mature and expand, but almost all are now locked as they are, vulnerable to the variances of memory. I could look at that in so many different ways, some clearly sad, other happy, but it lays out for me something that could be rather interesting, 5 years from now, how will I remember “it”.

Knowing me

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I woke this morning for some reason the closest to being awake than I have felt for a very long time now. I wasn’t jumping and hopping across the room or anything silly like that, I just felt reasonably refreshed as you would expect to be after 11 hours sleep. I know that many reading this will find it rather odd for someone to be celebrating being awake, but it is such a rare occurrence that it is something special. Just sitting here in as much pain and discomfort as always but with a brain that feels clearer and more alert is really wonderful. I had my weekly phone call from my friend Jake and I found myself for once managing to speak for more than 4 words without falling over into a row of stuttering, yes, I lost my words and yes, I still sat here hoping he would keep talking as I didn’t have a clue what to say, but I was clearer and sharper than normal. One of the great things about talking with Jake is he has known me now for nearly 20 years and he has seen all the changes and been through all the hell of the times when I have lost the ability to talk almost completely, so other than Adam, he is the only person who understands me. He knows that silence doesn’t mean I’m not interested or I haven’t got anything to talk about or that I’d rather not be on the phone at all, he also understands and isn’t hurt when I do just have to say, I can’t talk any more, I need to go. He also can hear when I am tired and that my attention can’t be held any longer and he will end the call, letting me know he is doing so for me. Friends like that are few and far apart, in my case, he is my only friend that I have left.

I eventually managed to speak to my doctor at lunchtime yesterday, I have to say he was great, he went through with me the possible treatments and because of my loss of hair he thought and I agreed that HRT is my best bet. Adam, who is on holiday this week, seemed surprised when I said that was the treatment I was going to be taken, he felt that I needed to think about it, I felt I had nothing to think about at all. I have never been a person who is put off by all the hype around any drugs, I in fact don’t remember ever even reading the leaflets that come with them until I have been on them for a long time, then just usually because someone has asked me a question that I know the only place the answer is, is in those papers I ditch like junk mail. I might be very wrong about this but I have always believed that I should first trust my doctor and second, if you read all that rubbish, you are then primed to look for or even imagine problems. It has worked for me really well as to date I have never had a medicine that actually caused any side effects, well at least none bad enough for me to notice them. My GP had no problem putting me on to HRT as the biggest fears with them is that they can cause growths in the womb, well I don’t have one so there is no problem there. If they stop the sweats and my hair falling out then I will be happy. Loosing my body hair is of no issue to me at all, in fact I guess like most women, not having any is in fact preferable but loosing my eyebrows and the hair on my head, that is very much a different subject, I may not be a mirror huger but I do have some of the unbreakable vanities of being human. If you think about it logically it really is madness, these days people work so hard a being individual, at having a look that is theirs and theirs alone, nature hands us one for free and suddenly the fight is on to be like everyone else. I could buy myself a superb waist length purple wig to replace my waist length purple hair, yet I want my own and my own only. I could actually embrace this situation and take it as another chance to invent a look for myself, something that was almost removed by the fact I had to have a business appearance for my last job. Believe me in 1992 there were very few women who were heavily tattooed with purple hair extensions and heavily beaded hair, along with extremely visible body piercings, other than me, this could be my chance to work on an outrageous look to take me through the rest of my life, for now though I will try the HRT.

On the more conventional side I will be interested to see what the HRT will do for my health, as I wasn’t aware that I was going into the menopause, I wasn’t able to judge if there was any true effect on the rest of my health. Restoring the levels should be interesting as I will hopefully be able to know for once if some of the problems I have had recently, were actually down to the hormones vanishing or just my health. There have been loads of pains appearing in strange places recently, like the pain in my pelvic and around my breasts, both areas that are very much effected by hormone levels, I will of course be noting here what happens but truthfully, I am actually hoping that I will be writing nothing about it at all. I am hoping that I will just pop a pill daily and feel nothing other than less sweaty and little more hairy.

Being you

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If anyone ever wanted proof that I am not the sort of woman who stares for ever at herself in a mirror, well here it is. Following my post of yesterday I stopped and actually looked at my face in the mirror, really looked and I have also almost lost my eyebrows, you would think everyone would notice that, but not me! I have to admit that not looking has always been part of me, unlike most women I never carried make up, brushes and hairspray with me, other than the years that meant I needed a tool kit for work, I have never had a handbag much bigger than a purse, if it held my cigs, lighter, keys and money, I never saw the need for anything else. Once I had chosen an outfit, put on my face in the morning, fixed my hair in place and I was out the door, I never touched my face, changed anything or looked at myself again until the next morning, when it all had to be done again. I had taught myself how to apply stage make up, it cost a little more but it really only does need applying once every 24hrs and I took it as another of my freedoms in life, I was totally sure that I always looked as I wanted to, so there wasn’t a single thought needed after that. Once you are used to not looking, well you just stop looking, so for me to not notice something about myself isn’t really a surprise, well to me at least. Once the need to have a face for the world had gone, I simply didn’t have a reason to look at myself at all, add in the fact that my immobility has added so many pounds I hate the look of the bits I have seen, the result is stupid things like this, not knowing I have lost almost most of my hair.

I hadn’t really thought about the results of living a life like mine past what I would call the obvious, there is so much that changes just because you don’t have to be that person the world knows you to be. The start I suppose is when you stop getting dressed everyday, it isn’t laziness it a combination of getting dressed is so exhausting and the simple fact that I never bothered dressing past a dressing gown, when I wasn’t going out of the house, it was a natural progression. I bought myself two sets of pyjamas for the winter, two nightdresses for the summer and 4 dressing gowns, oh and of course the pressure socks. That is my wardrobe for the past 6 years, nothing else has been needed and it works for me. It’s not just your cloths that changes, the make up routine changes more than you might think, I no longer cover my face with moisturiser, or cleansers, or any of the other things that we women feel are important. You begin to realise that those things aren’t important, they are just things we do because someone somewhere along the line told us to, I saw the point when protecting my skin from the outside world, but it’s a world that no longer touches me. Those show off things, the long highly decorated nails, loose their importance too, they were there for others to admire, others again no longer there, so the point, expense and loss of dexterity to actually fiddle around with them, again it’s easier to just stop it all. The one thing that I find really annoying about the whole thing isn’t that I don’t look as I did, it’s actually the voices I can hear out there, the voices who have read all the rot on line, all saying that not caring about my appearance is part of depression, it may well be, but a it isn’t the only reason. Not everything that changes us, is from a text book, we change for a million different reasons and as long as you know what they are, you are comfortable with those reasons and living as you are isn’t an issue for you, then there is nothing to worry about!

Chronic illness changes us in so many ways and I know that a lot of women reading this would find the thought of not “taking care of themselves” as unbearable, what we all to often forget is that all that primping and preening is a modern invention, note the word invention. Humans were born with a body well able to care for itself, as long as it’s kept clean it doesn’t need hairspray, make up, perfumes and creams. Nor does it need fancy clothes, nail extensions or any of the modern things that some how many think are essential. Just as I would look in the mirror once a day, to be prepared to face the world, I am now content to not look at it at all and I wouldn’t have looked if I hadn’t been given a reason to, it’s not the end of the world, or a sign of anything other than adapting to what you are able to do and are comfortable with. It doesn’t matter how many other changers are forced upon you by your health, be it how you look, how you act or how you sound, your libido, your memory, or even just how you feel inside, nothing makes you any less a woman or any less a man, it just an adaptation to the one you were born, rather than adaptation of fashion. I may not look anything like my favourite me any longer, but as long as I still feel like the same person, then I am. I suppose that in some ways, like it or not I am probably closer to the real me than I have ever been, as I am no longer hidden behind a face I set each day and lived behind.