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…..

Peaceful acceptance

I don’t know if there is a sleep specialist reading this or if any of you have the answer to something that I am find more than just a little ODD. This isn’t the first time that this has happened but as it is the second night in a row that I have woke around 5 am in pain and in the same strange position I thought I would throw the question out there. I have woken with my head on the pillow and my shoulders parallel to the pillow, my body is in line until I get to my waist where it sharply twists so that I have both legs out of the bed and both of my feet on the floor. In the last few months I have occasionally woken with one foot on the floor so the second one there as well is another move on, why any of my feet should be there I have no idea at all. I woke both yesterday and today due to the pain it was causing me so I must have been like that for a while. There is no sign that I have actually been sleep walking or anything like that, I thought when I had one foot out that I may have done that by accident as my foot or leg was hurting, so a little sense there but both? As I said ODD. I really hope that I am not about to start sleep walking as I am dangerous enough walking around when I am awake, I can’t imagine the trouble I would be able to get myself in to like that. LOL

Yesterday was really a very average day, without any great traumas which is nice. It’s strange how life turns itself upside down when it comes to just getting through the waking hours. I suppose like most people the days I remember and enjoyed where the days when something special happened or something just a little different, now the days I remember and look forward to are the average ones. The days without extra pain or accidents, or anything of that nature, just to be able to wake up, get up, coast through what needs to be done and go to bed, are wonderful. I realised that something else has changed dramatically as well, I no longer have days where I wonder what to do with my time. Clearly I used to work and like everyone else I had housework and thing to do, so that took the bulk of my time but I did have points where I wasn’t bored just trying to decide what I wanted to do. That never happens now. Part I am sure is because I have less hours in my day, but mainly it is I believe because I now appreciate all the time I have, every minute of it.

Your view changes once you know that your life isn’t going to go on for ever. We all know that one day we will die, but once you have an illness that will ultimately be the end of you and sooner than nature gives all humans, things change. I don’t know how many years I have, but I know they are less than I did have. Knowing that makes you look at relationship, daily activities and so much more in a different light, you also make decisions about what is worth you time and what isn’t, as the time you have is capped. It isn’t something that you sit down and work out on a spreadsheet, it is something that just changes without your permission. One of the strangest things that changes as well, is my acceptance of my own end, I don’t fear it at all and I have an amazing calmness about the whole subject. I don’t know why or where from, but I feel really peaceful and accepting in what will happen. Even knowing that from now to then, my health will go downhill and I will feel worse and worse, with more an more pain doesn’t scare me. It is just the way it is and it is just what will happen, I have no choice or way of changing it. I guess I wish this is one of those feelings that I could bottle and pass on to everyone else in the world. Once you are at peace with your life and you appreciate the time you have and everything that you can do, there is a happiness that settles inside you and life becomes a very different and enjoyable prospect. It removes so many worries and so many problems that it is hard for me to put in to words, it really is something you have to feel to totally accept and understand. I just wish I could share it.

Financial Frosting

I am on the verge of turning on the central heating, this is the third morning in a row that I have had to put the fire on in the living room as the house is cold. I try not to put the heating on as like most people I don’t want high bills until I have no choice, with no work the need to keep the bills down grows daily. I know Adam would probably never put the heating on as like most men he doesn’t seem to notice the cold at all, at this second he is on the settee without a shirt on and I am here with a cold nose and fingers. When you loose your mobility you also seem to loose anyway of controlling your body temperature. It is normal for people with MS to not like it being too hot, but I find that I need the room temperature high with light clothing, if I add more clothes I don’t warm up as such but I start to feel ill. Locking the heat into me in a closed fashion, as a jumper would, makes my feel really bad, turn the heat up and sit in a nightdress and I feel fine, but let the external temperature drop and I quickly freeze. I don’t understand why temperature control is so hard to maintain, but it is really a big problem, add on to that I can’t afford to have the heat on, as I would like it to be, and there is my problem. I suspect that winter will only be a growing problem for everyone with the cost rising all the time, we are all going to suffer.

It is very clear to me now that every problem that anyone can have in life seems to be heightened by illness and it is often these heightened problems that make living with illness harder than it needs to be. I am not asking for any type of special treatment, but what I do know is that I now find difficulties that I didn’t include years ago when I made my first list of things required to make my future comfortable, just as I am sure we all do. You plan ahead, for example on what limited mobility will mean to you. I set my home up to be my nest as I knew that one day I would be ware I am now but I never thought that limited mobility would mean sitting freezing in my own home, when the thermometer is reading a temperature that I would have been happy to be in years ago. Or that I would be in the situation that in the upcoming winter months of not being able to go into my own kitchen and cook a hot meal because there is a very high risk of just burning it, bad on three levels, no much needed food, waste of fuel and danger of damaging the house. I never foresaw my future to be anything like this when I was young and I still never really foresaw it all when I got my diagnosis. I know it could be seen as doom and gloom but if it had all been written down for me to read once I knew what was wrong, I may well have planned slightly better.

The list of things that I wish someone had told me and explained to me, seems to grow all the time, but it is simply the fact that I didn’t know or imagine that has left me in this position. I know that we can’t predict the future but I also know me and I would have made more investments than just my works pension to help ease us through this time. That is actually something I need to look at soon as I can draw from my pension when I am 55, not that that may actually be a bad move, but I will have to find advice on what to do there. I hate all this paperwork stuff now and I like many don’t know when or who to trust when it comes to financial advise, I can’t get out there to do the rounds and see what advise is given by different people, so where do you start, again something I might have done differently, I think I would have had a better hold on my money and paid more interest as to where it was and what it was or wasn’t doing for me, when you have a steady comfortable income they are all issues you think you have a long time to get to grips with all that stuff, I thought it would be another 10 years plus before it was of final interest. Yet here I am, a little lost as to what and who I can trust to sort out all these things.

Alone

I have reset everything I do on twitter and the new format will start at mid day today with at reduced output I should now have some time to start on what I have talked about for a long time now, a book. I still haven’t worked out if I am just going to e-publish or look for a publisher but I don’t see I have a lot to think about on that score without a book to do either with. lol I am both excited and worried about heading out into something new but that is natural and if I wasn’t I would also know that I am wasting my time, with out fear and excitement a new endeavor is bound to fail before it starts as they are the things that add passion to anything in life. I am not actually going to start until tomorrow morning as I have something else I need to get done today so that everything is cleared out of the way and I will have no excuses not to get going.

It is a wonderfully quiet Sunday morning and I have the living room windows open yet the silence is only disturbed occasionally by a lone car. Days like this are strange I always wonder when there are no cars where the people are, and what is happening that I don’t know about, it feels so odd to be in a city without audible sounds that confirm the existence of the thousands that live here. I even checked the news channel just in case, well everyone could be inside watching something major, even when I can’t get out of the house I still have to know what is happening out there. I think actually that is another thing that I would put down as required to survive being housebound, you have to maintain a healthy interest in the world, I may not be out there any longer but I haven’t in anyway forgotten about it’s existence. I can see that it would be very easy to turn everything in on myself, as I don’t really need to know what the weather forecast is or what the latest thinking on business matters are, in someways actually I think it is more important now than it was before.

Although my blog is clearly about me and my way through all of this, if I actually sat here all day everyday thinking about what was hurting and what it meant and how I was going to keep going for the rest of my life, well I would really go mad and probably stop existing very quickly. Looking outside of my nest and continuing my interest in everything that interested me before, helps me to feel still part of the greater world, and that is really important. Anyone who is housebound will tell you there is a cruel fact, your fiends disappear one by one. When they are the ones who always have to come and see you and you can’t go and see them, when they don’t know any longer what to talk about, when coming to see you makes they feel guilty that they are still out and about, and when they can’t deal with watching you get more and more ill, they vanish. When you loose your physical link to outside, and outside no longer visits you have to do it yourself. So yes I do still continue in someways where I was before but I do it not as a way of looking back but as a way of looking at the now and what is now to everyone else as well.

I often feel very alone and that is very different from lonely, I feel alone not because I don’t see others but because I don’t see others like me and as stupid as that sounds that is what I want, I want to know others are also surviving and I want to know I am not the only one facing the problems I do daily. I think that is were Twitter has helped a lot, just hearing other voices coming back telling me they feel the same, or some that my words are their voice have helped me through what in many ways has been a rough year as loosing my job multiplied every problem I already had by a factor of 100. So now it is time to write, time for my next step on my path through this mess I now live happily.

Optical Neuritis

MS Hug

I said yesterday that the kickback had started and I was totally right, unfortunately, you know it really would be nice to be wrong about these things just occasionally. lol As yesterday progressed the pains all over me got worse and the lovely named hug came to visit. It really is an annoying symptom, on the whole it isn’t really painful more permanently uncomfortable which in many ways is more annoying as finding any position to sit of lie in is hard. For added fun last night I was taking huge yawns and also had the hiccups which when your diaphragm area is clenched in a mild spasm is interesting to say the least. All in all yesterday wasn’t a great day, not my worst ever but steadily going downwards as the day progressed, I went to my bed at the normal time and I slept instantly, that is I suppose the only thing that is good about bad days, they constant pain wears you down and exhausts you so sleep is easy, once all my night time meds have taken hold.

This morning it seemed as though I was actually a bit better, it wasn’t until I had my PC booted up and I tried to read the first page that came up that I realised it wasn’t. My eyesight is really really bad today. Optical neuritis isn’t something I am usually over bothered by, it was strangely one of the earliest symptoms which allowed the doctors to date when I might have had my first MS flare, when I was 21 I lost a entire center view of my left eye, it lasted several hours then cleared, it was also when I was 21 that I first made an appointment and went to the opticians complaining there was something wrong, like the other symptoms I had I would be heading back or already be in remission so they always told me there wasn’t, a universal problem for the first 18yrs. I know know that the blurring of my eyesight, like having a layer of Vaseline spread over it, was due to ‘Optical Neuritis’. I am lucky as I rarely get much pain with it either a lot of people find it totally agony to move their eye. The worst spell of it I have ever had was when I was still going into the office twice a week, I woke up one morning to discover I really couldn’t see the TV screen unless I was within one foot of the screen. That lasted 3 days and slowly cleared right back to almost normal, it is one of the reasons that glasses, no matter how good have a limited improvement. These days TV is more like radio when I am sat here at my PC, but if sat on the settee which is 4ft closer to the box, with my glasses on I see everything with clarity.

I have counted myself as luck to not be bothered with it too greatly as I only really have one good eye and it is shortsighted meaning that I where different glasses for different things, my PC is probably the only thing I don’t normally use them for as I have increased font sizes and so on and manage OK. It is my right eye that is the real problem and that has nothing to do with MS, I have Macular degeneration in my right, at the moment I have small spots all over my cornea that I can’t see through at all, it is a bit like trying to see through a heavy patterned lace, usually the small clear spots that I have are better in their normal vision than my right eye, today they also have the Vaseline effect. So seeing what I am doing is an interesting experiment, clearly I am still seeing well enough to ensure that what my figures know they are typing is what is appearing on the screen but sitting with your nose just 9 inches from the screen isn’t the most comfortable position for my back.

It is strange how all of us with chronic conditions brush these type of symptoms to one side, if you were to wake up tomorrow and not be able to see very much you would panic and head straight to the Doctor convinced you were going blind. We on the other hand accept it and move on just hoping that it will improve given time. I know like everything else the day will come when it won’t go away and like everything else there is nothing that they can do about it, and one day I won’t have my eyesight back, I just hope this isn’t that day.