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…..

A plan is formed

It was and is pride that wouldn’t let me ask for help and my writing it all down, then posting yesterday with the knowledge that Adam would read, had the effect of me bulling myself, and it worked. Adam and I spoke last night and we are going to try something between ourselves to see if it will make any difference to the situation. We hadn’t discussed any of this before as I hadn’t wanted to talk about it, being independent and pigheaded can be useful but it can also be damaging. Adam is going to buy a calendar and we are going to plan out what has to be done when, unlike the check lists I have kept myself and landed up manipulating this is going to be where Adam can see it, remind and bully me into doing what has to be done, just as he already does when it comes to food.

I realised when we were talking that a large part of my forgetting is caused by another problem that I can’t actually do much about. I get exhausted easily as you know, so I have a system now of not doing one thing at a time, as in if I need to get a glass of coke I wait until I have one or two other things to do as well like go to the toilet, before I move. That way I waste as little energy as possible as I am doing as much as I can in just one trip away from my seat, the flaw is that I forget some of the things on my list, or worse still, mark it as done, when I have done nothing other than briefly thought about it. I now have some work to do today and over the next few days to see what I can do about it, I have already found one thing that I see why it goes days from when it should be done, to being done and it is a simple one to fix. I keep my medication in the kitchen where I have a cupboard big enough to take it all and I need to be in the kitchen with all the meds out in front of me so that I know I have asked for them all. We have phones all around the house but only the living room phone has stored numbers on it, so to call my doctor I need that phone, problem. I have to keep walking back and forward to sort it all out. If the kitchen phone had the number on it, I wouldn’t need to use up energy or put it off until by some miracle I remember to take the phone with me. I have spent the last 4 days putting that one off as well, I am sure that a lot of the problems I have daily can be helped a little if not a lot by simple changes, others well we need to think about them.

I don’t want anyone here in the house with me as I really don’t think I could deal with it, strangers stress me out more than anything else I have to deal with, I want to see if we can sort it out well enough, now that both of us know what the problem is, two heads may be better than one as they say. It is going to take some thought and some care but I hope there is an answer that means I don’t have to have an outsider checking everything I do off on a list and telling me what to do, like a child who doesn’t know better. If it doesn’t workout well then we will have to think again. I know I need more help than I did a year ago, or even 6 months ago but I need to have a feeling at least, of having some control of my life, for as long as I can. I am lost and I am scratching around trying to find solutions but I am still a long way off from lying down and saying you win.

Dreams to the future

It is strange how your life can be taken over by something without you giving permission or actually realising it is happening. A year ago I never thought that I would be writing a daily blog and being very active on both twitter and Facebook, somehow it all happened. Life for me has followed that pattern all to often, drifting into one thing after another and still no real direction in anything. I think it is true of most people, we just are, and we just do. Clearly when I started to blog my goal was for me to have a record, and I had no feeling or desire at that point to take what I was doing beyond that point. I found myself though with a purpose and a direction, which is kind of funny when you think about it. My life and my writing are all about actually not being in control any longer, but it has delivered the first strong goals I have ever had. I don’t think that I have actually written them down before as they are so long term that I have no idea if I will ever succeed in completing them.

When I started writing that clearly was about my MS and little else, how it affected me and how things felt when they were happening. It grew from there into my second blog which was my feeling about all kind of different subject, post that were designed to make people think about all kinds of topics that they may never have really thought about or even heard of in some cases, to me that was the fun side. Between the two I opened myself up totally to the world, there is little now that is still unsaid, not hidden on purpose just not said yet. Just before I started my second blog I branched into Twitter and it was my rapid growth in followers that started to lay down the ideas of the goals I now have. MS is not the focus any longer so much as all chronic illness and most of all those who are housebound. No matter where I have looked or searched that is no real information or network for those who are housebound, nothing that gives them a voice and it really feels and looks as though we are the forgotten ones. It was this that pushed the current goal of writing a book, I was asked by several to do so and it is turning into a slow process as I have already scrapped it twice as I wasn’t happy with it, version three is about to be started, hopefully this time it will work for me.

Once I have my book complete and published in what ever format I eventually settle on, then I can move on to the next step one that I think will start to make the most difference. I have this idea of setting up a support network for those who are housebound and their carers, a place where information can be pulled together, not medical definitions but as I have done here, where an person with any chronic condition can add their description of the way it affects them. Hopefully there will be enough people involved over time that it will supply description that people can actually understand in layman’s terms that it will be a resource for all. As I said a big plan that I might not ever be able to complete or even get of the ground.

I have come across so many people who are living lives that the ordinary person in the street working 9 to 5 have no idea even exist, people who repeatably say to me that I put there feelings into words, but I can only do that for the things I know about, there have to be others who can also do this and add to the site supplying help in away that is just as important as any medicine, the knowledge that you are not alone, others are going through the same thing. Once housebound you don’t meet others, you can’t talk to other patients you might have once met at a clinic or a support group. Being isolated from the world is one thing, being isolate, trapped by an illness is another. I want to raise the profile of all those in my position, including their carers and families, just having others in the same position words, to reassure you, means an amazing change in how you feel and how you cope.

Well that is it written, that is my goal, a long way off and may be just a dream for ever, who knows, but I do know that there has to be a better way of keeping the world open to all, surly the internet can supply it and provide that missing link in our lives.

Self-determination

I am sure you will all know the experience I have just had, one of those showers were the purpose of getting clean vanished to be replaced by it’s sheer enjoyment. It’s strange how things like that happen at times, an everyday act that suddenly changes into something else, everything is just right and you are taken off to another place were the chore no longer exist. Just standing there letting the hot water wash over me was a sheer pleasure, that there was a temptation to stay there longer than I should. I doubled my usual time and enjoyed every second of it. Adam and the district nurses don’t like the fact that I insist in showering when I am a lone in the house, but it is one of those things that I have maintained as private time, no interference and no feeling that I have to do it when told, rather than when I want.

If you have a chronic condition I expect you will understand that feeling, but those that don’t will probably be firmly on Adams side, I can see it, I’m not mad yet. Safety is one thing, independence is another and I, like so many things in my life, form a balance between the two. As I point out frequently I know when it is safe and when I am just being pig headed, for example I stopped climbing ladders when I knew my balance would no longer allow me to, it had nothing to do with the million times that I saw the shiver pass through Adam when he realised what I had been up to, it had everything to do with choice. The word ‘self-determination’ are more frequently used in connection with the free choice of the people of a country to be governed as they choose, I and many others take that world further, that an individual person should have ‘self-determination’ when it comes to how they wish to lead their lives, that basic acts of showering, eating, sleeping should be at the individuals choice, not when a carer can be allocated to do these things for you. There will be a point when I will have to accept that the choice has ended, as unfortunately when carers are required, those cares are looking after so many that it has to be on a planned system so that all are helped, but I am still capable and I should be allowed to be so unchallenged, until I ask for help.

Disability heightens the importance of self-determination, no able bodied adult would want rules applied to them, that they have to follow, for no good reason. My determination to stay in control I am sure is one of the reasons that I am still as active and together as I am. In an ideal world there would be on carer allocated to one patient and they would be with them not just as a carer but as a companion, enabling that person to live a full and productive life, cost makes this impossible. I have realised lately that I should write much of what I want the future to be down, so that those who are responsible for my care know, as I may not be able to tell them myself at the time. I have a horror picture in front of me of being eventually being in a care home and being forced to sit in the main room were there is a sing-song or a bingo game going on, that is my idea of hell, I can’t imagine being unable to tell them and that I would rather go to my room on my own when things like that are going on. That is clearly just one of many things that I have strong feelings about, but a detail care plan written by me and lodged with my Dr is probably one of the few ways I have any chance of a future with a degree of happiness.

I have already looked on line for a formatted structure, without luck so I am going to have to put one together by myself, once I have it sorted I will post it but don’t expect to see it soon as I want to get it totally right first. I have planned my life so far and care so far and found my route to happiness, I want that self-determination to the end.

Achieving structure

It has been a strange week on one level it has been incredibly normal and quiet on the other it has been really hard and stressed, which is not normally for me a good place to be but I think apart from being a little tired I have emerged rather unscathed by it all. Heading through life with no direction has become a feature over the last few years, I never was a great one for detailed plans but I always had a general idea of where I was heading in the far, medium and near future. On waking I would plan my day a head and work my way through the list, the final goal of being simply able to say all done. When you have a working life or children these are easy plans to make and follow as there is a set reason why you have to write a report or get the sports kit ready for the next morning, life for most of us has a natural structure which takes little thought or consideration, but all that disappears when you are chronically ill, housebound and unemployed.

I consider myself to have been very luck to have stepped slowly to this final position where I am, I gradually worked more and more from my home and less and less in the office, the gentle slope over several yrs to the stay at home for ever began 5yrs ago suited me well and slowly showed my company that they were loosing nothing by my not being sat at desk in their offices, it in fact freed up a large space where all my files and my meeting area was, so in a way it suited them too. My biggest hurdle was when I was made redundant in September last year and it was at that point I had to make a clear decision of what I was going to do, to give my life purpose and structure which like it or not we all actually need. All of us can slope around doing nothing for a while but you can’t do it for ever without it eventually doing you more harm than good. I firmly believe if 10yrs ago when I received my diagnosis, I had done what I have seen some others do, just sitting down waiting for death, that I would have found it or I would now be sitting propped in an invalided chair drooling in a corner somewhere, I made the decision, not so much to fight but to continue living, they are two very different things and second was the one that seemed more my style.

If you are at this point where work realistically is slipping out of your reach, I recommend 100% do not allow yourself to sit down in front of a TV during the day. TV even at it’s best, which for me is any informative Documentary especially the history ones, will rapidly reduce you to being the image of progressive illness that haunts all of us in the small hours, when sleep won’t take over. Do not let it happen. I still 10 mths on send out applications for work, I know that getting a job that I can do from here is a slim possibility but it is still a possibility that I don’t let go of. I actively set up loads of job searches and religiously read through and apply to the mountains of emails that arrive in my in box each morning. I knew though by December last year that the possibility of my starting work in the near future was slim and although fun I couldn’t just play games on my PC for ever, I needed more. Years ago I had loads of hobbies, but all of them where in the craft field and that wasn’t possible because of my dexterity, but this may be an option, even a possible money earner for you. With that option closed I decided to start writing, something I have never done before, well yes I wrote as school and I was good enough for the School magazine, so I gave it a go.

At the basic level blogging can be done for nothing, important when there is no income, I pay a small sum for this account as it allows more options, I am hoping that the ads on the pages will supply enough to pay the costs, but they bring in very little so far. (Do me a favor click on one when you finish reading, it will supply a few pennies for each ad click.) I found quickly that I first – loved writing, second – others wanted to read it, third – I could fit it in a daily scheduled point, I believe that the third point is the most important for sanity to continue.

The second part, Twitter, many I know have found me by that route, Twitter opened up a new audience and a new interest. Even for those that don’t’ blog, when you are housebound twitter is an amazing, free tool that lets you be in contact not just with our friends and family but to meet new people, some with your medical condition or interests. It would be at my top of recommendations to anyone who is housebound, we all need human contact, carers and family can’t be around 24hrs a day but Twitter never stops.

I may have no income other than what the state pays me but I have a full day everyday. I do as much or as little and I feel I am achieving and that is the big secret of dealing with a Chronic illness, and I suspect old age as well, you have to keep achieving, keep you brain active and keep you world interesting. When the word bored enters you head, then you need to change things push yourself in a different direction, in 5yrs of being at home I have never been bored even now that I am unemployed, my time is still filled with enjoyable activity, well apart from the job hunt that has got a bit tedious I admit, but I have to look and I don’t know anyone who doesn’t have one daily task that they don’t like. We can all achieve things, even if you are unable to do what I have, or you are bed-bound there are still achievements to aim for, these days you can study and obtain qualifications lying down or sitting, makes no difference, thanks to the internet we the invisible humans of the world can become highly visible and continue to be part of it as well. Search on line there are millions of free things that will inspire you and fulfill the possibility to achieve.