A safe environment, for who?

Posted on March 31, 2014 by livinginalimitedword

This is going to feel like Sunday all day long, Adam is sat on the settee and I have the TV on programs that we would watch together on a Sunday, but it’s Monday. I am doomed for the rest of this week to be on the wrong day, just because Adam has taken a much needed day off work. His day with his family seems to have gone well, but as always he has little to say about it as well, what is there to say about a day spent sitting in someone else’s home talking & talking, I know what they are like when they get together. I have to say that conversation is something I now find difficult, it is as though my brain exists, just at the point someone want to talk to me. It happened yesterday when Teressa gave me a quick call, as she said to annoy me by saying “Happy Mothers Day”. She knows how I feel about all these so called days of celebration, but just like my Birthday this year, she had to be the only one who didn’t do what I always ask, ignore it. I guess that is what happens when you produce a daughter so identical to yourself, they simply have to do what you would do, exactly what they were told not to.

Yesterday was an extremely short day as with no company here to keep me awake or for me to want to be with, I crawled off to my bed just after 7 and slept without waking once in the entire 12+ hours. I woke just as I do every morning, not quite with it. It seems to take me, at least, an hour to wake enough to be of any real use at all, I had to fill my lighter first thing today and I really wish I hadn’t, I wish I had done the logical thing and just lifted the full one off the coffee table, but no I had to fill the one that lives here at my PC. It went wrong from the second I managed to remove the case as I dropped that onto the sideboard making the first bone shaking clatter. Then I couldn’t find the tool that I use to lift the gas nozzle, making enough noise in the dead as I shifted everything in the draw around, but the best one I saved to last, lighter filled I tried to flip the nozzle closed but I dropped the metal canister onto a pile of crystal coasters, sending them clattering all over the place, none of which would have happened if I had just waited until I was awake. My coordination is always bad but first thing in the day it is pointless for me to even try and do anything, hence the reason I don’t bother with breakfast until just after 9, that way I have a chance of eating my porridge rather than wearing it.

I try hard not to have to wonder around carrying things, at most I always just carry one thing at a time and if there is anything on or in what I am carrying, I use an unnatural amount of pressure to be sure I have hold of it, so that I have as little chance of possible of actually dropping it. To date I have managed to never drop a glass or plate in a way that it has been broken or damaged, most slip from my hands when I first pick them up and that means that they are always over a table or kitchen surface. It was the reason that I also stopped doing any washing up, wet dishes were just too much of a risk, I dropped them frequently and I classed the risk of damage just too high. Every time I found myself holding a wet glass, I also found myself scared and wound up by the whole situation, it just wasn’t worth it. The purchase of a dishwasher to take the bulk, leaving just the glasses and odd things that couldn’t go into it, is a purchase I recommend to anyone with MS, as long as you also have a partner who can take over the rest. There are few gadgets that I have found truly useful, but this is one of them that I would never be without again.

All too often it is the small things in life that make the biggest differences, I know there will be a point when I will have to give in and get some kind of trolley so that I don’t have to carry anything, I don’t know how long it will be before it is needed, like everything else my body will tell me the time. Strangely I would guess that Adam would rather I got it sooner rather than later, but not because he is worried about my breaking things, more because he knows all too well I would have to clear it up and then I would be in danger of hurting myself in the process. We are so set on opposite tracks that it is sometimes unbelievable that we are together, I worry more about our home than I do about myself, the dangers of falling in most of our house is that I could land up lying in a pile of broken crystal, as it is everywhere. I am willing to take the risk, as I want it all to stay where it is, where I can see it and enjoy it. I have also discovered that it is a great inspiration to twist when I fall and land cleanly on the ground or softer surfaces where crystal can’t be displayed.

Mostly when I do fall it is just as I am standing or sitting, but the times I fall the most is when I am changing direction, in doorways. Doorways are deadly, but they also supply lots of things to hold onto and large clear area’s without anything there to hurt myself on. It is almost as though my brain has me cleanly passing the door, but somehow my body hasn’t quite got the message and tries to continue on a direct root, the result inevitably is either I am on the floor, or I manage to grab hold of the door frame and avoid the collision with the carpet. One of the joys of living in an older house is that door frames aren’t flush to the walls, they are pronounced and stand proud as part of the Victorian styling, I doubt they every thought that what they were building was an invalid friendly environment. Having a cluttered environment also means more furniture than is fashionable, which also means more things to hold on to, I know that on the surface my home would look like a nightmare for someone like me, but it honestly works well. Take a look around your home and just think about how you would move around if you were in danger of falling all the time, do you have enough things to keep you on your feet, or are there just blank walls, flush doors and hard unpadded floors. Often the opposite of what you think will work well, is the actual truth in life.

Please read my blog from 2 years ago today – 31/03/12 – I have a plan, a cunning plan…

I’m tired today, not anything to do with my MS or lack of sleep, it’s the kind of tired that seems to come from somewhere deep inside, almost from your sole. The kind of feeling that makes you want to go back to bed curl up and sleep in the hope that when you wake the world will be a different place. It is a tiredness that comes from my emotional heart as if I have pulled one bucket to many from the well and it needs time to refill. This week has had no more stress or activity than usual, nothing that has stretched me or challenged me. I feel as though I may have been running on half empty……

Being mother

Posted on March 30, 2014 by livinginalimitedword

The end of March and for a Sunday, unusually I am on my own. Adam has just left to meet his sister then head out to together to spend Mothering Sunday with their Mum. It is an annual event and one of just a few days each year that Adam does spend time with his family. We have always had such different views about our birth families, in fact, we couldn’t be further apart on our ways of thinking about them if we actually sat down and tried to be. I find his closeness and need to be in constant contact somewhat alien to me, but I know that is because of my almost none contact situation I am in with my family. Growing up to be isolated as I was in my mid-teens left me permanently disconnected from them, for two years I didn’t even speak to my mother, not because I didn’t try, but because she always found reasons not to have any contact. Then suddenly out of the blue when I was just past my sixteenth birthday, she reappeared as though nothing had happened and wouldn’t even speak about it. When she re-entered my life along came my sister and younger brother, but the pattern was set, contact would continue from then on, but there would be long gaps, times when none of us spoke and times when it felt as though I never had a family at all.

Adam was only 20 when we met and still living at home, his mother lived in Glasgow at the time and I was welcomed into their family from the beginning without any question or reserve. When the day came that we moved into what was our first home, it was then that I realised just how important family was to him, the long phone calls were just a bit of a giveaway, not just once a month, or once a week, at times it was almost daily. Adams family and mine just didn’t compare in any way what so ever. The phone calls still continue but with his mother no longer living in the city and with us not having a car, visits are rare now, so I am more than happy that he has taken today so see her, as she is still an important part of his life. As for my mother, well I can’t even send her a card for mothers day, as my brother still hasn’t replied to my letter telling me her new address, all I know is that she is now in a home and as I haven’t had a phone call to tell me otherwise, she is still alive. Even if I did have her address, I still wouldn’t have sent her a card, as she hates them, so I would just have put myself in further into her bad books than I have spent my entire life. I was brought up to honour my mother and father, which I have always done without question, even though both, but especially my father who is dead now, have given me enough reason to have cut myself clear of them long ago, but they are my parents and I had no choice but to be here when they chose to check on me. As I said, chalk and cheese, definitions of family so far apart that neither of us could possibly totally understanding each others definition of what their family really is.

I built my own family, it started with my children, that goes without saying, I have one adopted brother, Jake and now, of course, I have Adam. Family isn’t to me about birth, family is about feelings and love, neither have anything what so ever to do with blood. My family members have changed over the years, as sadly members that I thought would be with me forever have left, but strangely Adam is the only partner that I have ever included in my list of those who are family, somehow others just never quite made the grade, Adam somehow just walked into my life and straight into my family.

So here I am on Mothers day, writing about the one thing that I sometimes think I know little about, being a mother. Teressa is my pride and joy, she is a daughter that any mother would be proud of and no one who knows both of us could ever doubt the connection if you ignore the height difference she is my mini me, with a nickname from birth of “midget”. I guess that is the point of days like mother’s day, they make you think of everything that connects you to that word, be it your mother, you as a mother or even the mothers of others. Do we need to celebrate them, to give them one day in the year that we remember what they do for everyone, I don’t think so. If you need to be given a date where you make a fuss of them, then I think you have missed the real meaning of what a mother is. The first unwritten rule about being a mother is you care 24/7, 365 days of the year, for life, without question and without needing to be thanked for it at all, as our thanks is just knowing that our children are happy and doing well. Despite everything that happened, all the madness of my marriage to their father, I have all that I even need from them, two adults living their lives surrounded with love and happiness.

I went to bed last night so tired and so close to sleep, that I wouldn’t have been surprised if I had managed to fall asleep whilst still on my feet heading to the bedroom and I woke feeling not much better, having lost an hours sleep thanks to the switch to British summer time. I really wish they didn’t keep changing the time, I know all the reasons behind it but they seem to have totally forgotten the effect of losing sleep has on a small section of the population. I am already planning to have an early night as I know Adam won’t be home until late, so I have the perfect opportunity to get a couple of extra hours without leaving him on his own.

Please read my blog from 2 years ago today – 30/03/12 – What Stole Sunday Evening?

For the past few days, I have been avoiding writing about this. I have been doing my usual thing of pretending that if I don’t think about it, it doesn’t matter. The words Ostrich and head come to mind. It doesn’t matter how old you get we all seem to have this silly self-preservation theory, that we all know doesn’t work, be we do it over and over again. To make the Ostrich theory worse one of the points of me keeping this blog is to write all about what is really happening with my health.

I have in the past several occasions where my mind has played tricks on me, I think I have already documented…..

Time together

Posted on March 29, 2014 by livinginalimitedword

For the second night in a row, I went to bed early and I slept like a log, normality for me as I it only takes my head to touch the pillow and I know nothing until the alarm sounds. I count myself as so lucky that sleep is my peaceful escape from everything, yet I can’t help equally to curse it for taking so much of my life from me, so many hours wasted and gone, without the slightest memory of even one. I know I must dream, but for me, it has always been the case that I just don’t remember them unless something really odd happens. My hours of sleep are like someone just switching me off, then eventually on again many hours later. It doesn’t matter how many times I tell myself that my body needs that sleep, going from a person who used to sleep maybe 6 to 8 hours a night, it was and still is a major adjustment to always sleeping at least 11. I constantly wonder what would happen if I switched off my alarm clock and just let myself sleep until I woke naturally, I don’t want to try though because I know that it would screw up my routine and there is always a price to pay for that, but I can’t help wondering.

I have had this constant feeling now for years that I am running out of time, there is just never enough hours not only in a day but in my life to do the things I still want to do. This damned illness steals more and more of that time as it has worsened, slowly it has made me sleep longer and longer each day, it is only time before I can’t fight it and I loose another hour out of each 24. Last night Adam and I had a stupid conversation about the TV programs we watch at night and just how much of our lives are taken over by the TV in general. While we were talking I admitted that if it wasn’t for there being programs on TV that I wanted to see, I would probably go to my bed much earlier than I do. To a certain extent that is true, but I know if I did go, I would feel terrible about it, not because I would be missing the programs, but because I would be missing the time we have together. This whole subject has become a real battle for me lately, I don’t know why but I keep finding myself sitting on the settee, feeling totally uncomfortable and in more pain than any other place I sit or lie, just wanting to go to my bed. It doesn’t matter how much sleep I have had during the day, I spend nearly the entire evening fighting between my need to go to bed and the fact if I do, I will not be spending time with Adam.

Like any couple, our time together is limited by the fact that Adam has to work, I am at least here when he comes home from work, but I am always tired, even during the day, so my conversation level and enthusiasm toward talking isn’t always what it should be. I constantly feel as though I am being pulled into small pieces, all lacking in energy, but all trying to do everything I want and need to do. My focus these days is on getting everything I want done online daily completed, during the week that is easy and done without any guilt as I am alone and he is at work. During the weekends, even thought he sleeps through every morning, I have a guilt that I am not putting the energy I have, into making the time we have together as good as it possibly can be. It doesn’t seem to matter what day of the week it is, the time when both of us are here and awake, I am always tired, always wanting to sleep and that makes me feel bad. I don’t know when I last really felt awake or when we last were together with my brain actually keeping up with what he is saying, rather than struggling because it just doesn’t want to keep up with anything.

Living with the sensation that given the freedom to do so, you would rather sleep than do anything else is a battle in itself. I fight daily to just write this, send out my tweets and so on, that little sliver of energy I have has already long gone, I am now in that zone where I feel as though I am running on empty, that is the feeling that will be with me for the rest of the day. I feel as though I have used up the little bit of me that is here daily, not doing the one thing that is actually the most important, spending quality time with Adam. The quality bit seemed to leave long ago, all that is left is a shadow of the person I was, I have little concentration, little emotion and even less energy.

We married in 1999 and for 13 years of that time I have been ill, seriously for 9 of them, so I know that Adam knows all of this, but it doesn’t make it any easier for me to live with. When you marry although you vow to look after each other in sickness and health, no one really believes that that sickness will arrive and then last forever. The pain I live with is personal, the difficulty I have with walking, or cooking, or bathing, or any other physical actions is personal, but total exhaustion isn’t just personal it invades both of our lives, every second, of every minute, we have together, I am exhausted. It may be stupid but I don’t feel guilty for being ill, but I do feel guilty for being tired, but when is illness ever logical, when did illness ever respect love, never.

Please read my blog from 2 years ago today – 29/03/12 – Friendship prt2

This morning I discovered that my daughter like millions of others including myself is facing redundancy. I feel so powerless to help her in any way, with her living in San Fransisco it is hard to know what I can do. I am not at all aware of the laws in America but I do know they are very different to ours so I don’t even know if they have to make redundancy payment or if it is just a sorry goodbye. The company are moving their operations to London and as she has a UK passport there is a chance that she may be offered a job over here, but she won’t know until tomorrow what, if any that job may be.

It seems so cruel that the wonderful person who set out to try and help her Mum get a job, by in her own time setting up web pages and accounts through which she tried to start a campaign, should now be facing the same situation. I know she has a life in America and a guy she in now living with, that to smash…..

The furture

Posted on March 28, 2014 by livinginalimitedword

I woke this morning with the alarm sounding rather than pain anywhere, I’m not saying that the pain has gone, but, at least, it is at the level I normally live with rather than ripping me into shreds. I am sure that it is just what you would call normal, but I worry that days like yesterday are a window into my future, I know that the doctors would give me stronger painkillers, but that somehow doesn’t make it seem any brighter, just knowing that my body would ever have to be producing that level of pain somehow doesn’t seem to lie easy on me. I know it’s pointless worrying, or even thinking about something that I won’t be aware of, but it’s my body and me that will be living in the knowledge of reality. It is so often the fear of the future that gets to you, even when you know that there will be ways round thing, ways of making life bearable and even enjoyable, somehow it still sits there in your mind chipping away, telling you this is your future. I can tell myself a million times, just look how well you have managed to date, you will manage all that is ahead as well, but there is always that doubt, that time bit that says “what if”, that, I suppose simply makes me human.

I don’t often think too deeply about the future, nor as you may have noticed do I write about it that much, although there is one post that covers the furthest future I will ever see. I used to like everyone else sit and dream about what would lie ahead, what Adam and I would do together, where we might live and what jobs we might have, but when your health has gone those dreams go to. It’s so wrong that once your financial future is taken away, almost all your dreams go with it, money is an issue that shouldn’t rule our lives but does. We can’t move home, where we live is where we will stay, but over that is also all the holidays, the fun and everything else that any couple could have hoped for. Our future now, well who knows, it all hangs on what my MS does to me, how quickly it progresses and what it chooses to remove from not just me, but from us. That is the really hard thing about chronic illness, it isn’t just taking from me, it’s also taking from Adam. The next hardest well that has to be the not knowing, not knowing what will happen next, what part of me will fail, what will help will I need and when will it all happen.

I don’t think any of us like things to be unknown, but if we all really think about it, none of us know what the future will hold for us, we like to think we do, we like to have those plans and we like believing that they will all come true, but anything can happen and the truth is, every dream we have can be snatched away in a second. I don’t think there is one phase of my life that I didn’t see my future in a way that just never once happened, I wouldn’t be sat here, or even in Glasgow if almost any of them had. So now when I look to the future I try to look at it in a far more practical level because I know from my own example that the future has a habit of being what it wants, not what we want. I have learned to not try and look too far ahead now, to me, long term planning now is to look just to the end of this year, but I try to keep it even closer than that, just to today or maybe tomorrow.

When I was told I had MS I didn’t really understand just how changeable it really is, or how one day you might be able to walk but the next you might not. I saw it as a much more predictable process, that for example the ability to not walk would be a long slow change, with lots of time to adapt, but it doesn’t work that way at all. At this second I can still walk, badly yes but I can still actually get around, there is no guarantee that I will be able to this afternoon, it could vanish that quickly. So the future becomes the next few minutes, not the next few years if they exist at all. It is hard at first to get your head around it, but once you accept that is the way your life is, then you also start to look at everything else differently as well. It’s not hard to be happy for the next few minutes, then the next and so on, it’s not hard to see the wonder of life and the beauty of everything, when you might be seeing it for the last time. There is one last thing that makes life with a limited future easier to live with and it is a strange thing, the fact that I forget. I know it happens all the time, I live through pain I think I can’t deal with, only to find that the memory of it is something that becomes hazy and lost very quickly. Just as I remember when my left arm stopped working, I don’t really remember what it took to get it back or how I dealt with everyday life with just one hand, I just know I did it. The next few minutes could turn out to be the worst of my entire life, but first, I’m not sure if I actually remember what was the worst thing to date was, so is it the worst or not? But more than that, whatever happens, is temporary, it will happen and it will pass, just to fade as everything else has.

My future is now and that is honestly how I see and live my life, knowing that yesterday will fade and what lies ahead is out of my control, has focused me on the here and now, it is the only part of my life that I have clarity and any control over, so I’m going to make the best of it I possibly can.

Please read my blog from 2 years ago today – 28/03/12 – Body Check

Good morning brain, I hear the alarm clock telling us it’s time to start another day. Before we move best make sure everything is there and ok.

Feet first, I apologise for walking around so much yesterday and I really did get the message form your soles. I understood quite clearly from the sharp fiery needles you communicated with, that I need to use you less. I also promise I will remember today to take my fluid meds and save you from over-stretched skin. Not wearing shoes I know is a mixed blessing for you but we have agreed before it is better to risk the odd cut rather than the pressure corns caused on our deformed toes by them. It’s OK toes I hadn’t forgotten your location, I know you think you are frequently forgotten but making the nails catch on my skin won’t help me bend to…..

Spasm and more

Posted on March 27, 2014 by livinginalimitedword

I woke this morning at just before 5am, my legs were screaming at me in a way they haven’t done for a long time at night, in fact, I don’t think I have felt it like that since before I was prescribed morphine. It wasn’t just the spasms that were shouting for my attention but I also had pain coming from the work that the chiropodist did yesterday, both my big toes are red and angry where she clipped and scrapped away all the dead skin, with them so raw the pressure of the duvet was just too much for them. I sat up and reached straight away for my booster tablet and glass of coke, I knew that there was nothing I could do other than take the meds and try to massage them until they calmed. Breaking the spasm isn’t the end of pain, it continues to hurt for a considerable time after, so I took myself into the kitchen for a cigarette after adding more Savlon to my toes. As it was so early I laid back down and tried to go to sleep, but as I lay down I heard an alarm clock above me and our neighbours starting to move around. I lay there just hoping that I might still find sleep but when 6:10 came around I gave up and headed through here to start my day. 9:40 and I still have the dull ache in my lower legs and for some reason a headache, I guess that could be just because I am still tired and once I have things sorted to a point where I can, I am heading back to bed to try sleeping again.

One thing that I didn’t mention yesterday was that I spoke to the chiropodist about the fact I keep find the balls of my feet taking the weight of my legs when I am sitting down and how I only seem to sit flat footed if I really think about it. She confirmed just what I thought that the muscles in my lower leg are tightening and setting in that position, she said it might not work but that I should try my best to extend the muscle in gentle exercise fashion whilst sitting. I totally forgot last night but I have been trying this morning and I am surprised just how small a distance I can lift my toes upwards, proof if I needed it that my muscles are starting to set. I always knew it was a possibility, but this is the first true sign of it and yet another thing that adds onto my list of things that says progression is really taking place. I can’t help wondering if it is also the reason why I seem to have had worse spasms lately, with the muscles already sitting in a tighter position, I just can’t help wondering if that is what is making the difference.

I remember quite clearly the first time I was driven mad by spasm, I was working as a bar manager which meant I was on my feet most of the day and night. As it was a hotel bar I was expected to wear uniform and to wear court shoes or higher, not the best thing for anyone’s legs, but when they started to cramp, as that’s what I thought the problem was, I went to the doctor. He prescribed me with quinine tablets, I thought it odd but I took them, surprise, surprise, they didn’t work. I know now that I was in a relapse but I just thought I was run down because of working far too many hours and drinking far too much after hours. That’s the problem with countryside hotels, you live in and residents can keep the bar open as long as they keep drinking, this, of course, means you land up drinking with them much of the time. I all to often found myself not coming off duty until around 4am and back up again to open the bar for business at 11am. For a period of 6 weeks I was just wiped, but I had no choice but to keep going, more than two days off and I would have found myself out of a job, small hotels don’t carry people at all. Spasms were just part of my problems, I was trained and in charge of the cellar which included looking after the real ales, which entailed a lot of heavy lifting and shifting, which with muscles that didn’t even want to be used wasn’t any fun at all, believe me. Despite all of this, it was a job that I loved and always had a secret wish to return to at some point in the future, just like when I was DJing in later years, I was basically being paid to have fun!

I am sure there is someone out there right now in just that same position, working on in a totally unsuitable job, totally unaware that they have MS as the doctors misdiagnose over and over again. It is really hard to know if working on like did more damage or if it made no other difference other than making me feel like death warmed up. Once I was diagnosed I was in a sedentary job so there was never any discussion with the doctor about my ability to work, the issues only started when I started to have problems with memory. I don’t remember ever anyone even asking if I did any sports, heavy work, or physical hobbies prior to the point where I crashed into progression and they were impossible, so unimportant. All I can do is base this next part on my own experience but right up to the point when everything went wrong all at the same time, I was always as active as possible right through my relapses. In fact, I only stopped working for 3 of them, all 3 were put down to different things by the doctors, but all three had me incapable of doing much at all. In between I continued to live my life at its normal overactive style, did it do me harm or good, as far as my MS goes, impossible to tell, but from my own well-being and happiness, returning to normality was essential.

I don’t know if it is what the medics would recommend but I think the reason I dealt so well with the relapse remitting stage is two-fold, first, I didn’t know what was wrong with me. When you are either told there is nothing wrong, or you have a virus or something, well you just get on with it and there is no one running around after you telling to things easy. The second reason is just like now, I was happy! Yes, I had spells of poor health, but between them once I had divorced my first husband, I was more active than others, including long hours of exercise, dance and over zealous cleaning. Did that change the frequency or depth of my relapses, I just don’t know, but I honestly think it did, just being fit and healthy through the rest of the time logically had to have helped. I just wish that I was able to do a fraction of what I did then.

Please read my blog from 2 years ago today – 27/03/12 – Summer Wipe Out

It was the first day of really warm weather yesterday here in Glasgow and for me the first day of being wiped. Once you have had MS for a few years in a strange way you get used to the pain and the fatigue but every summer this one gets me and surprises me. I don’t know the medical reason why this happens but it is really like someone has removed your batteries. It isn’t the same as the normal tiredness it really is a total withdrawal of energy even for simple movements and the drained feeling grows as the heat rises. Once out of my childhood years I really quite quickly lost the love of summer, when it no longer meant long days playing it lost its luster.

I can only really remember few overly hot summers here in Britain the first and strangely the most vivid was the summer of…….