Every solution breeds a problem

For the first time since I sat in my wheelchair several weeks ago, I actually abandoned it yesterday. I had just been back and forward to the kitchen three times, the first planned, the second two, to fetch what I had forgotten. On the final time, I climbed out of my chair and was about to sit back down here. My eyes scanned the desk as I was lowering myself with the aid of my desk, when I realised, I hadn’t been to the fridge to pick up a drink. I gave up on the lowering and slammed down on my chair, my head hanging low and so angry, I wanted to scream. Once more, I was going to have to fight with my arms, which had complained through every turn of my wheels, on my last trip. Here I was, with no other option, but to return to the kitchen and to go through all of that again, but, I did have an option, I could walk. In some ways, I am really surprised that I haven’t taken that option before. I still have legs, yes their weak and they are unreliable, but they are still here. So I did it. I walked. Through every step, I could feel myself shaking from my toes, right up to my hands, but it was still faster and it didn’t hurt my arms. I had walked there and back with my hand dragging across the wall and grasping at anything, I thought, would hold my weight if my legs failed. I have to admit, that the relief when I was once more sat here, was huge. All I could hear going around and around in my head, were questions, “What would I have said to Adam if I had fallen?”, “How would I explain the fact I had left my chair and stupidly walked all that way?”, “What on earth had I been thinking?”

It isn’t something I am going to do again in a hurry. Somehow, I think I actually needed to do it. Not just to fetch the drink, but to remind me, why I am now once again on wheels. Changing your life, from ambulatory to assisted by a wheelchair, is a huge thing to do. The idea that you just sit down and totally forget, that your legs are even there, would be madness. I can, as far as the physical mechanism of walking goes, still actually walk. I can stand up, take a few steps in safe areas, but the whole idea that it is safe to do so over greater distances, would be the greatest form of insanity, I could lay claim to. Trust me, life in a wheelchair may be safer, but it is a million miles from easier, faster or even enjoyable. At first, it was all a challenge. Dealing with all the sharp turns and obstacles that seemed to actually jump out in front of me from nowhere. I learned, I grew more confident and slowly, I became used to it. At about that very point, my arms and hands stopped just being annoyed at me and took up a stance, of pure objection to the whole thing. Mornings have usually been not to bad, but as the day progresses, there is less and less cooperation. By the evening, it isn’t just when I am moving around, but when I am doing totally nothing, I am in pain from my neck, across my shoulders, and down into my fingertips. Worst of all, it is no longer just my thumbs that are dislocating, I now have three more fingers, that have discovered the same trick. None of them jump out totally, but enough, trust me to cause extreme pain and to have me grabbing and pushing them back to a normal location as fast as possible. If anyone has the cure or even something that would help, please tell me it. It so often feels now, that what seems to be the answer for one problem, turns out to be just another problem. Life has reached a point where nothing is a simple straight forward process and I honestly, can’t see it getting any simpler, anytime soon.

It isn’t just pain that my chair is causing. I have issues at night because I can’t manage to move quickly when I am half asleep, without crashing into things, usually causing myself more damage than anything in the house. I need speed, because I normally wake, out of the need to get to the loo. No, I don’t want a commode in the bedroom, not for a long time to come. My chair won’t fit into the far end of the bathroom. There simply isn’t enough space, although that wasn’t a problem two months ago, it is now. So, I am now considering grab bars and rails, to assist me. A step, I’ve resisted for so long, that it somehow feel ironic, that I’m thinking about them now, thanks to another aid. Again, thanks to my chair, having a shower seems like a much more complex and annoying process, than ever before. Clearly, standing in the middle of the bathroom, to get dry is just too dangerous. If my legs won’t hold me when walking, or even just standing for a short while, the danger when twisting, standing on one foot, or any of the other odd positions, we stand in when getting dry, is pure danger. Bringing my chair in with me, yes, it means I can sit down, but because that means it has to be brought in backwards, once in, I can’t get to the loo. It also makes getting dry, one, huge problem. The towel catches on everything, wheels, brakes, armrests, footrest, you name it, it will catch. No matter what system I use, I always seem to land up with damp spots, that I don’t find until I am trying to get dressed. I could ask Adam to help me, but that holds two problems. First, I don’t want Adam to be drying me and second, it’s another idea that I have fought against for years.

My wheelchair may well have removed the danger of my landing on the floor, but it has brought with it, a range, far bigger than just those I have listed, of problems that I now have to fix. If, I hadn’t stood up yesterday; walking out of total frustration; with the result that it had; quite honestly; at this point, I would be thinking of returning it to its cupboard. I need it, but it’s not making life easier, in any way I can think of. Actually, I have to take that back. I know that all I have to do is read back to the posts I wrote when I first set off on my newest form of life. It did have a huge positive impact, and I have to remember that. It isn’t so much the chair, it is life has so much clutter attached and moving in a rather large and new piece, isn’t going to be easy for anyone. If I am to tell the truth, none of us want our lives altered, by anyone or anything. Life, no matter how scary, is most enjoyable when we keep it simple. We don’t like change, and we definitely don’t like change that means, even more change, is required. I know myself, that it has more to do with attitude and desire, than reality. We see problems, that aren’t really problems at all, they’re just more change and that’s the real issue. If I can find grab rails that don’t scream hospital at me, well I could live with them. The rest is much harder, but solutions must be there somewhere, ones that aren’t just going to lead to even more problems once in place. The real problem is, is it doesn’t matter how far you try to plan into the future, when your fighting against an illness, that just doesn’t stand still. As I said, two months ago, rails weren’t required, they’re need though, is getting closer. Ouch! that has just put something into my head, something I hadn’t thought of, until this very second. Are all those problems, that I’m blaming on my chair, actually just new problems, ones that would have appeared, with or without it? Can I scream now, please, pretty please?

It’s a horrid thought that new problems will appear every two months, maybe, I’ve just reached that phase. Could my health really be moving that fast? Is that really why, I am feeling suffocated by problems? When I think about it, it kind of makes sense, but so did my first line of attack. I always knew that as time went on, that I was going to be doing more and more problem solving, just to make life livable. If I am going to remain independent, I know that life will have to change, systems revised and problems solved. Stupidly, I started putting them off. My brain is degenerating just as my body is. Much of what I am facing now, where problems that I always knew, would rear their heads, but I was doing the normal human act, of putting it off. Once, no problem phased me, in fact, I embraced them and loved them. There was nothing like a new challenge, just to keep you going. That, though, is now my main problem, being human, it has forced me into a world where mentally I am playing catch up, instead of being one step ahead, as I once always was.

 

Please read my blog from 2 years ago today – 18/11/2013 – Caught in nowhere to go

If I hadn’t spent so many years living with pain I think that at some point over the weekend I would have been at the local A&E department. My diaphragm is still giving me no peace, but it has made me realise just how…..

Feelings change everything

For the third January in a row, I have found myself in tears on a Sunday evening, the series “Call the Midwife” is back on our screens. I find it a really great series, well made, true to it time line in history and with every episode it pulls on my heart in ways others might not feel it, as it keeps touching on subjects so close to my own life. From the child who broke my heart for ever, Jeffery, through the one I just couldn’t reach, Christopher and the one who’s love is so important to me as I lost her, then found her again, despite her father’s best efforts to keep us apart, she still comes home to me now, my beautiful Teressa. Due to circumstance more than anything else, all three of them are locked in my heart as tiny children, even the two who are now over 6 ft tall and dwarf their mother. I really shouldn’t watch shows like that, last night my pain was so clear that Adam stopped what he was doing just to give me a cuddle, he wasn’t even alive when Jeffery was born, but he knows better than many just the impact he had on me. Yet again the odd tear is running down my cheek, I guess we never forget and it never truly stops hurting.

I woke in the middle of the night needing to go to the loo, I don’t know what time it was but lying there beside me was Adam, it’s the first time in over 8 years that we have shared our bed at the same time. After several nights of him saying he would come through, he had at last made the jump and was there just where he always should have been. I don’t know if I woke him, or he woke me but he spoke almost as soon as I started to move, which instantly told me that my earplugs weren’t working. They only work well for about 3 days, then need to be washed before used again, it is as though they lose their spring and can’t then fully seal the ear drum from sound, so when I returned to the bedroom I had to try and find new ones, all the time hoping I was not disturbing him which I am sure I did. I had been really surprised to wake and find him there, but it was a pleasant surprise nearly marred by my falling over, I don’t know if it was because he spoke to me as I was putting on my dressing gown or pure coincidence, my balance slipped and felt myself starting to go backwards. Stupidly it flashed through my mind that I couldn’t fall, not then, not just after he had come to bed for the first time, that was more in my head than any danger to myself. Once I had made it back to being actually in the bed, he rolled over so he could hold my hand, I was glad to hold it but it was so odd just trying to go back to sleep that it took me much longer than usual, I can see it is all going to take both of us a little time to get used to it again. I know I woke several times more before the alarm sounded, mainly as I was finding being cuddled up in my normal fashion of the duvet right up under my chin was causing me to overheat. I had totally forgotten that lying next to him is like lying next to a fire, he somehow radiates heat constantly something I have never discovered to be true of anyone else I have ever known. If I am being totally honest, well I could go back to sleep right now without thinking about it and for some reason, I am also not able to hold a constant temperature this morning, I am either too hot, or too cold with no happy measure that works throughout my body. Right now, my top half is roasting and I have had to take off one of my dressing gowns, but my legs are freezing, it is all part of my PRMS I know that, but I also know that if I haven’t had enough sleep it is always worse, but as I said we will get used to it. I am sure that within a few days of sleeping together again, we will do just that, sleep.

It’s going to be an odd week again as he is off now until the 4th of Feb, as much as I love having him around, it never leads to a week that feels as though it has been normal in any way. I guess that is the reason why when anyone suggests that I should have a carer who comes into see me, well I turn it down forcibly, in a way I actually cherish that little bit of freedom that allows me to do what I want without having to think about anyone else’s needs or wants. Part of that, I know is down to my just being and independent person, but there is also a large dose of actually just enjoying my own company. Adam often jokes that I enjoy the silence when he is not around, but it is, in fact, the total opposite that I enjoy. I love being able to have the TV on loudly, not worrying that it might wake him from his normal slumber on the settee, I also don’t have to worry about letting cupboard doors bang or the floorboards creaking, I can just go about my day with my mind on nothing else but myself and what I want and need to do, when I want to do it. I know that sounds selfish, it’s not meant to be, but I know the day will come when what I want just isn’t going to be practical and I am going to have to share my entire life with others there to care for me, so whilst I can still manage, well I am going to make the most of and enjoy every minute of it. When you know your future, well you honestly then see what you have right now in a different way, being myself has become something I hold onto far tighter than I ever did in the past. For most of my life, I was always happy to go along with others wishes and accepted that what I wanted was just a small part of a much bigger picture, it took me a long time to work out, actually I don’t think I really did until I was told I had 10 years left, from then on I know I have become that bit more selfish and that bit more determined to have my life my way. I just read that back and it sounds so bad, it isn’t meant that way at all, but those who read regularly don’t need me to explain that, I wouldn’t miss a moment that I do spend with Adam, when he is awake.

Right now I don’t know why but I am in pain in both my armpits, it happens from time to time, but there is nothing there that I can find to be causing it. One of the things I have found in the last few years since my walking has become somewhat unsteady, that I develop odd pains in odd places. I am sure that I what is happening is I am pulling muscles when I catch hold of things to steady myself, just like the mysterious bruises I used to have all over my legs when I was still working in the office, I am managing to damage myself in my attempts to save myself from worse injury. I doubt there is a single person with any form of MS who hasn’t found the same thing to some extent, it somehow though just doesn’t seem fair, it feels as though you simply can’t win and this stupid illness will get you one way or another.

 

Please read my blog from 2 years ago today – 26/01/13 – Arguments inside 

I have been reading through old entries in this blog, it is hard for me to get my head round just how much I have written in one year, mind you if you write everyday if is bound to add up quite quickly. When you sit down everyday with a purpose that says you have to write exactly and truthfully, how you feel and what has happened in the last 24 hours, it may sound either really simple or really difficult……..

Not what I thought

I can’t face the idea of breakfast this morning, it is a three fold reason for a change not just me feeling sick. First up is the easiest one to explain, I had a late night due to a late showing of “Eastenders” that I didn’t want to record, I wanted to see it going out at the right time, so no sympathy there, totally my own fault. Second was the fact that we always eat our meal together on the first of January, just as I had done for Christmas day I had chosen fish for our main, with simple vegetables in a cream sauce, simple to cook and quick to prepare. Christmas lunch had been outstanding, so I was really looking forward to it. The salmon which had a lemon and pepper butter just had to be cooked inside it’s paper bag in the oven, when it came out it just didn’t look that appetising but I know well enough that looks isn’t everything. I added a few more veg and bit more sauce on my plate than I other wise would have, as both were my selection and the sauce my recipe and I was right to have done so. To me the lemon didn’t taste as lemon should, it tasted like a chemical and over powering for the fish, Adam loved it and ate mine and his, but I wasn’t over bothered as I still had the veg, sauce & potatoes, more than enough to fill me, plus of course there was dessert to look forward to. It was supposed to be a light gâteau with profiteroles and chocolate mouse on top, Angel DelightInstant Wipe, both hated from childhood onwards, with balls of tasteless cardboard was closer, but I ate it. All my life I have always been a person that even if I didn’t like something I could and did eat it all, I had been brought up that way, like or dislike didn’t come into it, something changed a few years ago and it was a huge change for me. I suddenly found myself questioning why I was eating foods that I really didn’t like, which I think is a fair question to ask, but for me for some reason it has turned into not eating anything in it’s place. If I don’t like what is there, I prefer just to not eat at all and I have done often for days in a row. I am sure if we were out some where, or some one else other than me had cooked it, I would still eat it out of politeness, but if it’s me who is preparing the meal, then it’s my choice. I do though still find myself with an issue when it comes to putting in the bin, what I know is perfectly good food, yes I still have those words from childhood ringing in my ears, “someone somewhere would love the chance of eating that, you don’t know how lucky you are.” I also still find it hard to get my head around how I changed myself so radically, as I have totally failed that sort of change in so many other parts of my life, I suppose not having a huge appetite these days may go a little way towards it, but it feels as though I am getting more and more picky as time goes on. The third reason didn’t arrive until 2 am, when I woke in a hurry to get to the loo, clearly my insides that don’t normally move without dynamite being applied, wanted rid. Put all three things together and I suppose it isn’t that much of a surprise that the idea of eating anything for breakfast just turned my stomach.

Last night Adam was clearly not pleased with me that I had once again turned my nose up at what he thought was a really good meal, he more than me, seems to be constantly concerned by what I will and won’t eat and the quantities when I actually do. I guess the fact that I don’t really have the ability to eat huge quantities has played a huge role in my eating habits, when you don’t really feel like eating, doing so with something that simply doesn’t appeal is doubly hard. I didn’t even think about it until this morning, but it is highly likely that the problem that appeared last month when I found that food just didn’t taste right, might have been behind last nights problem. Both the main course and dessert had huge issues, ones that now I think about it were too extreme to just brush away as something wrong with the food, it is highly likely that the problem was me. To be honest I have been throwing away an awful lot of food recently and nearly always because of how it tastes, oddly including things that were fine to start with, but half way through I simply found I couldn’t eat any more of, not always down to the quantity, but more frequently due to the taste. Like a lot of things, after the first couple of days when I suddenly found everything tasted wrong had settled, I forgot about it, one of the few joys of bad memory, I forget the bad things as quickly as I do the good. To me symptoms aren’t symptoms to bother with unless they stay around and cause me problems, they can come and go, that’s normal, but one bout of something is never enough to say that it will truly effect me going onwards. Even now I am not ready to put this fully in the realm of true symptoms, I need that bit more proof and more examples before I make that step.

I used to think that I knew all the things my body could do to me and all the tricks and oddities, but the last year has seen more things jump up and hit me in the face, then hang around as part of my life, than I can remember any previous years. I honestly though at this point in time last year that I knew my future and what progression really meant for me, it appears I was totally wrong. Progression isn’t just the old getting worse, it is also the discovery of the new and they are and can appear at any moment in time and that I should never sit back and say that it, I know my future. Realising that though does make me wonder just what this year will bring and what I will be thinking this time next year when I spend some time looking back.

 

Please read my blog from 2 years ago today – 02/01/13 – Independent or Supported

For many of you out there this is the first day of normality after the holiday, here in Scotland there is still one more, today, so as you might guess I have my snoring companion for one more day. I had a phone call from my friend Jake last night, at first I thought it was……

New beginnings

Well it appears my New Years morning really are good ground hog days. I am sat here with a glass of bucks fizz, something in the background on TV and Adam snoring, totally identical to two years ago and in fact every single New Year since I haven’t been able to make it through to midnight and the bells. I have to admit that it really doesn’t bother either of us as neither of us have ever really been huge fans of the midnight madness, but we do both enjoy the chance of the post Christmas feasting of New Years day, once I have written this, well it will be time to make the scrambled eggs with smoked salmon trimmings through it, to be eaten with croissants, what’s not to like. Christmas and New Year are the only times we eat together now, for so many different reasons, but I don’t know if he said it to please me or if it was genuine, but for the first time neither day has been filled with meat as I really find it just to hard to deal with and Adam said he didn’t mind at all. I do at times feel as though I am forcing changes on his life, which he may not care about at all, but I do as I know all to well, life isn’t just about me.

I can’t work out why as the house doesn’t feel cold, but my hands and feet are freezing, which with the rest of me quite comfortable is really odd. I know it will be just one of those odd sensations that PRMS creates, but the coincidence of both hands and feet at the same time is as I said a little odd. I have been so busy this morning with all the New Years messages on Twitter you would think that my body wouldn’t have time to invent the impossible, but it seems nothing is a good enough distraction for that. If I haven’t already sent a message of happiness for the New Year to you directly or in reply, well I wish all who are reading now a very Happy New Year. Like many I used to wish people a happy and prosperous New Year, I said it, well once I could actually pronounce it, because it was what my parents always wished others and they them, I saw it as the right thing to say, no thought ever put behind it. It took me many years to drop the prosperous, but I guess we all get to a point in our lives where either traditions change or our values do, for me it was the latter, I realised that prosperity wasn’t the important bit and it didn’t make me sound grown up, just trite and shallow.

Growing up is the oddest thing that we humans try to do, I honestly don’t know why we are trained to believe there is this huge importance in being something we’re not. The only part of growing up that is important, is being able to get and keep a job, as without it, well life will be very limited, strangely the majority of us aren’t actually taught about or trained as to how we actually do that. I was lucky, as other than being taught how to be pretentious, I was also taught to work and to put a true value on making my own way through life. I have mentioned many times my growing up years, how I learned as we all do from not just our teachers but our parents, and just how deeply those double edged swords of life can cut. I will be 54 in a couple of months and I have just realised that I am still more deeply affected by my early years than I ever thought was possible. I long ago forgave both my Mother and even more so my Father for the terrible things they were responsible for, but I hadn’t really realised that there is hardly one thing I still do that I wasn’t taught by them, things that I had lost in amongst all the bad, as once you are carrying pain around you forget to say thank you for the good things and there were good things as well. Forgiveness isn’t enough, on it’s own it is a job half done, a start but not enough to make life as happy as it should be. I could sit here and make a list of all the things that I have let go of, but that list wouldn’t achieve anything as they no longer hold the pain, or the need to be spoken about again and again as they once had, but what I had never done was to look at my life and list the good things that came out of that time and there was a lot of good things, things I had brushed over and hidden under the corner of a carpet of pain. I guess it has taken me so long to notice them as they didn’t have the same strength and didn’t shout as loud, often the way of the good things in life.

Yesterday when I was writing about how important learning is to me even now, I omitted to say that it is my parents I should be thanking for that, they knew I had a hunger to learn things most little girls have no interest in and they not only let me, the encouraged me to begin with. My private education was the start, but time spent in my grandfathers antique store, not just cleaning and serving, but time with the cabinet makers and packing crews. Telling my big brother to let me help with his fixer-upper his car when he could, sending me to piano lessons, letting me spend hours discovering and bring home things mothers don’t want in their homes, but greeted with a smile. Letting me help in the dark room, or with decorating and DIY, even sending me to Art Summer school, nothing was out of limit’s and nothing not right for a girl, all of it be thanked for. As a child I felt they forced me into working for my weekly money, working for an hour before school every day and every Saturday morning for the grand payment of one pound, which for 1972 wasn’t bad. Now I thank them, even though it turned me into a manic bluebottle for years, if they hadn’t, I wouldn’t be writing this every day, regardless of what happens or how I feel.

Harder is to thank them for the things I had to forgive, as without all of them, well I doubt that I would be this person who doesn’t give up, who became determined to be herself and to enjoy life, regardless of what it brings. It some how feels right now to thank them for all of it, regardless of how I saw it at the time, or after, and not just them, but others too. We can’t escape our history, we can go back and change it or stop it from happening, if we could, well who would we be, I’m me and comfortable to say so because of them, good or bad, forgiven and thanked for.

 

Please read my blog from 2 years ago today – 01/01/13 – New Year nerves 

I am sitting here with a glass of buck fizz, Oliver Twist on the TV and Adam snoring, it may be a New Year but some things don’t change. lol. I woke briefly early this morning as……..