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…..

Unexplainable Loss

The other evening I was talking to Adam on the settee, not a big deep conversation just the normal chatter sparked by the TV programs. I’m so used to not being able to find the next word, that that has just become the way I talk, stutter, silence, words, stutter, words, silence, but on this occasion the words didn’t just vanish so there was a pause, all words vanished, I sat there totally lost not sure what to do or what was happening. I know it was only seconds but the first thing I said, well actually shouted, was “AHHH, I’m never going to talk again”, as I slammed my head down towards my knees, failing to even manage that as my head stopped a couple of inches above them. I was trying to remember the name of the rehab hospital for the forces not far from Glasgow, a place I have been, and I have raised money for in the past, but I could find nothing to even help the word appear. If that had been it and the word or others appeared, it would have been fine, but I was aware of searching madly in a total blank and suddenly that search stopped, there was totally nothing not even words in my mind circling to get there, nothing, a total void. It lasted seconds but I know it happened, and I know I have never had that happen before. The words that came out were the actual first words I found and they came from deep inside as a scream of fear. For seconds or even less that was my heart felt fear, that no words would appear and no voice would be able to get them out.

MS and many other illnesses effects the brain and speech is a normal thing to be attacked and to become difficult to impossible form or be understood. The closest I have seen to the way I feel is those who have had mild strokes, I recognise the look in their eyes, as they try to be understood, searching and trying desperately to push the words out of their mouths. I can empathise as I live there with them a lot of the time. My speech is very varied through out the day, the more tired I get the worse it gets. I hear in Adams voice a frequent frustration with me when I am at my worst and if he is tired to the snaps and jump-ins increase until I have to stop him as he winds me up more and more resulting in everything getting harder. We all forget words when talking from time to time and I am sure you know yourself that you do it to. I remember that annoying feeling from years ago myself, but this is so much more and so much more frustrating. I know, and I can prove it is a speech center problem as I can sit here and type endlessly without the same issues, the words spill out one after another with just the odd pause to think or correct.

We all take speech as an automatic process and a something that will be with us for life but that isn’t the truth for all of us. There is no hard or fast rule it could happen that I am the one talking if badly, to my end and you with normal health now, could be the one unable to form words, but the likely hood is the opposite. Being a progressive condition my speech will progressively worse, I fear that the seconds of the other evening will grow to minutes or even to forever.

Looking into myself and explaining to you or anyone else is hard if you have no near experience, the closest I can get is probably to say that it is a little like when you are in a deep sleep and someone is trying to wake you. In your head you hear their words, part of you is trying to answer and part pulls it into your sleep, desperately trying to fit it into your dream, so you can ignore it and muddling it up in your mind, reality and dream fighting each other. If you have understood that part, now add into it that the first part which is answering is distracted by the dream and it can’t get the words out. Now add frustration, then suddenly the dream disappears, what you are hearing makes sense but what is happening has turned to nothing, even the confusion vanishes because you know you are in a void, unable to go back to the dream and also unable to respond to the words you still hear.

I don’t know if it will ever be as bad as that again but the odds are it will and it will get worse. I hope that what I have written make sense to most of you as I feel I am writing about the unexplainable, but I have tried as I always do.

Partnering illness

I have been reading back through some of my posts and I noted that I have spoken a lot about my life now that I am housebound and the time before I was diagnosed, yet little about the time in the middle. There is really although I may not have really written about it a whole 5yrs in the middle missing. I suppose that much of it is just everyday life but there are big areas where many will be that I am going to pull back in bit by bit, probably knowing me not in the right order.

In the main life didn’t change immediately, once I had accepted what I had been told I very much went back to normal flow of life, although you might be better asking someone who knew me at that time if that is how I remember it or how it really was. I do remember feeling as though I had adjusted with ease and I probably did adjust faster than some would, when you have had a life of trauma after trauma you learn to accept that it will happen again. What I do remember most at that time thought wasn’t me, it was Adam. I have already written a post on our wedding anniversary which explains about how we met and married, we on the outside may have appeared as a slightly odd couple thanks to the age difference but we were very much in love when we married, bought out first home and sat in the waiting room of the consultant to hear the news that what had been found by accident on an MRI scan was correct, I had MS and following the other test they could also tell me that I had Progressive Relapsing MS.

It is just about this point that I want to switch the spotlight from me to Adam. I have written little about the effect all of this has had on him, as it isn’t in many ways my MS but ‘OUR MS.‘ and I can only tell his story from my point of view. Adam was newly 23 when we got the news and he seemed to deal with it well on the surface, we had a lot of shared tears and a lot of shared worries. I feared despite his promises and insistence that it would never happen, that he would leave me as it was too much. He had married a fit and healthy 38 year old who loved the freedoms of going out on an evening and was happy to go camping, walking and act the fool, our future together had always held the fact that I would be old long before him as nothing terrible, just a fact, this throw a new factor in that we had never thought about, that way before age brought it to our lives, I was heading for a life of being disabled and him as my carer.

I saw changes in him that I know he didn’t at the time, over the next couple of years he was there in many ways to support me through the searching of what was going to happen, and accompanied me to hospital visits, support groups and anything were two was better than one, but there was something happening that grew to a point that it threatened our lives together. He had always enjoyed a drink and wasn’t good at having one drink he preferred to keep drinking, and he did. Nearly every night after work he would go to the pub with his work colleges, phoning to say he was having one drink then home, I would call a hour after he had said he would be here ,to be told just finishing this one then home, the next call and the phone was off. This went on and on, weeks then months, eventually he admitted something I can’t believe I was ever stupid enough to have not worked out, he was deeply in debt. We remortgaged the house and the promise was made of never again, that he was going to sort things out and that was it. He didn’t and it wasn’t, the nights out drinking changed to nights in drinking.

I am sure that I didn’t help any of this as I became a strange combination of clingy, wife, parent, boss, hysterical, invalid, child and monster, the worse he got the worse I got. I feared inside it was all over and I admit fully I did push and push and push, I feared loosing him and our home and if it was going to happen rather then, than years later. Inside I was getting angry at him, although I thought I understood, I just didn’t need the added stress and the constant worry of what next. I don’t know exactly what was going on in his head but I did know in myself that it was a kickback, I don’t think he had the slightest idea of how to cope, unless it was in the bottom of a glass. I would say it was fare to say that I never saw him sober on one single evening for about 2, maybe 3 years, I would drink as well but I am the type of drinker who doesn’t like being drunk, a couple of glasses are normally more than enough. He again had lost control of what he was spending and wasn’t keeping up with what he owed. Again we had to remortgage and again we made promises and started again. I feared a pattern was there that would continue and I didn’t know what to do about it as I loved him despite it all, especially as I was totally sure inside it was all because of my MS.

Adam stopped drinking a few years ago now, he had for several months been having panic attacks and had convinced himself that he was having a heart attack on each one. No one was able to convince him otherwise, not even the doctors. I tried, his mother tried even his sister had a go, he was making himself ill as he now slept little, ate little and drank a lot. For months he had trawled the internet telling himself his liver was damaged and also his heart, his behavior was genuine, he sat often in tears, the fear clear on his face that he had destroyed himself. We had been to my friend Jake’s for the evening and as always Adam got drunk, just as Jake did. I can’t remember now exactly what happened that night other than I do remember Adam making a fool of himself and Jake getting pissed off with him and telling him so. What ever it was that made him wake-up to how he was acting, he did, not one alcoholic drink has passed his lips since.

We recently spoke about all of this and for the first time he said what I had been thinking all a long, it was a backlash, a panic at not knowing what to do, a grief at what was lost and all that MS was doing and would do. We have been married now for 13yrs and I still feel guilty that he is trapped in someways more than I am by my MS, I physically can’t go out and about, but my physical condition is also trapping him, in many ways we are housebound. Adam may well be able to go past the front door but he is always tied to me, even when at work he phones to check that I am OK, away from the home doesn’t mean away from the fear that I will fall and hurt myself badly. Away from the house yes, but away from ‘OUR MS’. Society looks at the person who is ill with pity and asks in passing if their partner is OK, but we don’t give them the support and equal admiration for living with it all. I do admire him and he deserves admiration, what happened to him was nothing compared to what he gives to me daily by being here and caring for me, it doesn’t sound much on the surface but it is. Our wedding vows bound us together, but no vow can bind if the love that made them isn’t still there and isn’t strong. The old fashioned view of duty is now that, old fashioned, duty isn’t what keeps anyone somewhere they don’t want to be, this is 2012 and if I felt that he was here for that reason and that reason alone I would divorce him, because I couldn’t live like that.

I still often wonder what is going on in his head and how he really feels as he is the type of person who doesn’t really talk about things that he sees as fact, his view is if it can’t be changed why talk about it, so I still have to guess. My guess, he loves me and there will always be a bit of kickback at MS because that is how he handles things. All partners of those who have a progressive illness have in someways a more difficult role that the person who is ill, the partner has to watch it without being able to stop the invisible source of what is slowly eating and away at and destroying the person they love, that person is disappearing tiny bit by tiny bit, that person is in pain and there is nothing they can do but watch.

MS inside me.

There are some part of my MS that are hard to talk about, even with my husband. Last night I had to brace myself and have one of those conversations. When you are close to someone it can be harder to speak than it would be with anyone else. You don’t want them to see you as anything other than the person they married, especially when you have already had to chip off small piece, by small piece of their image of you, it becomes harder to chip any more pieces away.

Adam and I have been married for nearly 13 years, we married on his 21st birthday and we were weeks past our second anniversary when our world crashed around us both. I do mean both, MS has changed both our lives. He has shared each and every step downwards and tried to support me. I have felt so guilty at times as it just didn’t seem fare that he should go through any of it. I had married him as I love him, not to condemn him to being my carer and no matter how many times he tells me that that isn’t how he see it, I feel guilty. So having to tell him that yet another part of me is now failing and I may need his help with it, isn’t easy.

For several years I have had problems with my bladder, it like the rest of me is erratic and uncontrollable. I was taught how to use catheters, to ensure that it is empty, which helps in two ways. First it dramatically reduced the number of times I had infections from a couple a month to a couple a year. Second along with going regularly, as I don’t get the normal messages, reduced the accidents. Despite this there have been times when I have been beyond embarrassed, as once it starts flowing there is no stopping it. To my total embarrassment Adam has had to clean up after me on occasions. So last night was difficult, I had to give him the news that the same is now happening to my bowels.

Over the past few weeks I had worked out what was happening and that was one of the reasons I had called the rehab team. With all the details the team have decided that me fears are right. The nurse came to see me again on Tuesday and we went over the initial diagnoses and options. When I eat the process just pushes it through at the other end, clearly the reason for my weight gain in the past couple of months, the reason that I look 6 months pregnant and the pain through out my torso. Yet again at the minute there is little they can do but try to control it with laxatives, sounds back to front but we will see.

Although I know my MS is progressive and there are no really remissions, sometimes it feels as though I everything is stable and I am in a period of calm, when in the fact it is nibbling away at something inside. I then become like everyone else, unable to see what is wrong and not understanding that anything is. I can and am, frequently as naive as anyone else, when I see my hands not working properly, I know what is happening, when I choke on my food or drink, I know what is happening, but when it’s inside, unseen, it sneaks up on me, tricking me into thinking I’m OK.