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…..

It’s not hard, just listen

It appears that it is truly possible to forget anything, even the position in your anatomy where you keep your tongue. I know I have had it all my life, but for the last few weeks, I have been repeatedly biting it. If it were in the same spot, well I would say it was swollen from all the biting, but it’s not. I have developed the ability to bite any section of it that happens to be in the way, which it appears to be a lot of the time. Anything from a stinging nip to an agonising full on crunch. It has even got the point where my mouth is now complaining by inventing the flavour of blood. I have checked over and over, but it is totally invented, not the slightest even pinkish huge to show that there might have been one real drop. I have no proof, but the only thing that I have been able to come up with is that it is all part of the odd things that have been happening in my neck and face in the past couple of months. There are so many stupid little things that have been happening, that I am sure it has to be. From the feeling of grit in my throat to losing my voice, numbness and dead area’s on my face, the sensation of dribbling and constant itching around my lips, the list keeps growing. Biting my tongue and even the inside of my mouth on occasion, even when not eating, seems to be just another part of a growing problem in the same general location.

I haven’t noticed in anything that I have read, but to me it is purely a logical conclusion, that if the nerves in one area of your body are affected in what are recognised symptoms, that the same nerve groups can produce other sensations and effects, not directly recognised as MS symptoms. From my own experience, I know an active area, does do unexpected things that there is no other logical explanation for. For example, if my PRMS can cause me to choke on food, throw spasms that make it almost impossible to breath, cause me to lose all feeling over one-quarter of my face, slur my speech due to weakened muscles and nerves, I am sure that it is behind the biting of my tongue. All the others are recognised symptoms, tongue biting isn’t, but the likely hood is, it belongs there as well. The truth is, that if there is a muscle or a nerve involved, where ever it is, that is doing something a normal healthy one shouldn’t, it is probably down to my PRMS. Therefore, if you have PRMS, don’t waste your life searching on Google for why anything odd has been happening for more than a week, you already know the answer. Note the word “odd”, there are a million things other than MS that can make you ill, if it sounds like a symptom of something, then question, if it is just basically “odd”, annoying, irritating and enough to drive you mad, it’s probably your PRMS.

In some ways, that is actually a really good description of any chronic illness. It doesn’t seem to matter what condition it is, there seems to be a universal truth, besides the pain, or the discomfort, they have an uncanny knack to be able to annoy, irritate and drive us mad. Quite often the hardest part of living with any condition isn’t the direct symptoms, but it’s the limitations on our lives and their uncanny ability to just make things difficult. I have often wondered if we haven’t spent too many years looked at chronic illness and disability in the wrong way. Everything seems to be focused on helping us to return to, or to mimic the lives we had before. To come up with aids, that allow us to go on as before, rather than working out new ways to achieve the same end. The perfect example of that to me is the work being done right now on building robotic aids, such as the exoskeleton. Scientist seems to be determined for some reason to put a paraplegic back on their feet, regardless of all the other issues that would bring with it. Undoubtedly their work is not only amazing, but groundbreaking and startlingly impressive in their field, but would it really give freedom and life back to someone who’s legs don’t work. Putting them back on their feet, wouldn’t fix all their other issues that come with their conditions, it feels more like a gimmick, rather than a true aid. I can see huge potential for its use in industry and other fields, but health, really? If those same robotics experts, were to turn those skills, into creating something that actually improves the lives of the disabled, I believe they could change lives very quickly and dramatically. Simply by starting with redesigning the wheelchair, what it does and how it is used. If they started by simply asking every wheelchair user what the issues are, they would quickly come up with a priority list and I am sure they could radically change lives in a short period of time.

Assumptions are one of the most degrading things that people do to each other. The majority of people would without a doubt, look at my life and assume, that the biggest improvement that could be made to my life would be for me, to be able to get outside. Wrong! I haven’t actually made a list from which I could tell you where that would rank, but I do know that it isn’t anywhere near the top. Just as I don’t believe, that the majority of paraplegics don’t really, want to be stuck in an exoskeleton, I don’t really, want to be able to go out. Once you have made it through that initial stage of shock and grieving, for what you have lost, something that happens at every stage, you grow accustomed to your life and trying to backtrack to an earlier stage, quiet often doesn’t improve anything. To an able-bodied person, getting out and about is something you just do. To me, it is a process that starts long before that, as to go out, I would have to get dressed, not just pull on pyjamas. but real clothes. Each and every piece of it, facing me with mobility issues, dexterity limitations and not to mention pain involved all the way along. Then there is the whole process of doing my hair, putting on makeup and making myself feel presentable. I would be less than half way through all of that, and I would just want to go to bed, but I would be faced with having to undo, all of that, first. Starting to get the picture. Yet, it is the one thing that everyone who hears that I have been here now for 8yrs, immediately comes out with the stupid question, “Can’t you move somewhere else?” The insults held in that question, are numerous, and enough to make me want to punch their lights out. I smile and say “Like many, we can’t afford to.” It’s easier than explaining the truth.

From the well-meaning to the should know better, assumption, is without a doubt the biggest and most insulting thing that anyone can do. Yet, from scientist to medic, to the media and right on to our own families, they all do it. There is one huge mind jump from a glib, “I want to walk”, to “I want to be put in this huge ungainly piece of metal and plastic, that is reliant on battery life and impossible to go to the loo in” but somehow, that is what someone heard. Yes, I do know it is in the development stages, but it is unlikely to ever be elegant and invisible under normal clothing. I might fancy going to the pub occasionally, but that doesn’t mean that I if I lived on the ground floor, that I would ever go there. In fact, living on the second floor, takes that thought out of my mind without pain, it just isn’t possible, rather than a tantalising possibility to torture myself with. Nothing, is ever going to be better for people like myself, or even those with far worse disabilities and illnesses than I have, until the day comes that someone actually, asks us, and actually, listens to our answers.

Please read my blog from 2 years ago today – 11/10/2013 – Set to embarrass

Something has triggered a round of twitches and jerks, to date I have been one of the luckier ones when it came to twitches as I have seen many who have them seriously, huge and drastic jerks that take over their entire bodies. For some it is not just the movement that is disturbing, I know that some find…..

Body Check Match

I have just read through “Body Check” and “Body Check 2”, clearly the styled I chose to write them both was different, but I made the decision to not read the first before I wrote the second as I felt that way I would be able to write as is without the first in mind. Doing the comparison was actually quite interesting and I am glad that the idea appeared the other day from no where. I didn’t realise until yesterday afternoon that I wrote the first in March last year, 11 months apart, I guess it might have been an idea to have made it a full year, but close enough I suppose.

My feet don’t seem to have progressed that much but I think from how I wrote the first that my concern at the time was more the pain than the numbness, which has increased a great deal. I manage a few months ago to reduce my need on fluid medication simply by wearing pressure socks, warmer feet and less fluid retention, I recommend that solution to everyone as something that simple managing to bring down the quantity of my daily meds is wonderful. Although I have lost weight in the last few months, I have to say that doesn’t seem to have had much of a change on anything as far as I can see, other than my waist line. So maybe my thought last year of my weight causing some of the problems was clearly wrong. The more I think about the rise in the numbness and the marshmallow feeling, the more I don’t like that progression. Sensation loss is something that as it grows means I have less and less ability to know where I am, that sounds a bit odd, but if you can’t feel where your foot is you don’t know if it is safe or not. I get the impression that last year it came and went, now it is there all the time. So yes there is a clear change on that point. The pain seems to me to be about the same and just like last year the burning and prickling is there nearly every night. I know that is a clear sign of nerve damage but why it being in your feet rather than anywhere else I have no idea.

Moving up my legs the reading became a bit more marked in change, clearly the pain in my knees is new, not there at all in the first post but here now. I think my concern that the muscle weakness is putting more strain on them and their pain is their answer. I used different words but apart again for the numbness was not there in ‘Body Check’ but it is clearly here now. Why the numbness is spreading up the back of my leg and not the front I am not sure but it is there, a year from now who knows. The level of pain in my thighs seems about the same, but luckily the pain in my buttocks is markedly better, the acquisition of my blow up cushion has made a huge difference, not fixed but better. Another thing to purchase or ask your Doctor for as there is where mine came from. I didn’t see any mention in the first of the pain that travels on a clear line on the outsides of both legs, that along with the numbness again is a big change.

‘Body Check’ suddenly jumped from a mere mention about my bladder and bowels up to my diaphragm, no mention of incontinence or intestine spasms, thinking back at that point I did have bladder incontinence as I have now but under control with my catheters, 11 months ago my bowels where well not fine but working, that was pre the worst of the problems, I do mention it grouped with the Vagal nerve issues I have, but it was just at the start from what I remember and from what I said. Along with that problem not mentioned at all in the first post are all the pressure and pain under my ribs, the two problems are really one but clearly hadn’t taken hold at that point.

Continuity in the hug stakes is clear neither worse or better just happy as they are, a welcome point. Breathlessness is a new, there was no sign of that before but when I think about it having had 6yrs of no exercise of any sort it is probably not unexpected. My lungs have no reason to do anything other than the minimum so why do more than you have to. My spine is the same as it has been now for years, like everything connected to MS it comes and goes in it’s severity but is always around, not causing pain, but being totally annoying.

Taking a look at my upper body and my arms seem to have also manage to remain not to vastly different, other than yes that growing numbness and their weakness having increased. Both work and that is good, clearly my worry over them hasn’t changed, but I read it again as an increase in numbness when the nerves in my head and neck leave them alone. My dexterity is about the same and so is the amount of pain I get in both, it is only a lift in that numb layer that I can see has changed in the year.

Although the way I have written it there doesn’t seem to be much change in the problems that my brain cause me, from stutters, memory problems concentration and so on sound on the surface the same, I know their effect on my life has increased, just as I know that I spend more time in the fog than I did in the past. Just saying they are there is was a bit of cope out, it like saying someone talks with an accent, accent can be mild or so thick you can’t understand them, these are just the same. I know in the past that I have had nerve problems on my skull and neck, it may just be a spell of them I can’t be sure but at the minute I would say yes they are worse.

That is where both posts end, but I realise there is much that I haven’t covered on either, I gave no measures of mobility or emotions, and no clue to things like how tired I am or the hours that I sleep. As a medical match they are useless, as a note to how things are progressing, useful to me. 11 months is not a long time but add on another 11 months and at this rate I will be living in a Marshmallow cocoon, locking the pain inside where I can’t reach it, to massage or press on. Numbness always scares me, as I know that my left arm had weeks of being numb on and off before it died, to find that most of me now has numb areas is a concern. I doubt I will ever understand how something can be numb and painful at the same time, but that seems to be a specialty of MS.

It has made me think about making myself a form that I can fill in at regular gaps, forms that make sense to me if not a Doctor, in my language I will be able to measure what is really happening and how fast. Even written by me if I have a concern, well then I can always hand them over as proof of my timeline.

Crippling Purpose

I slept well last night, I know that because I woke up able to get out of bed without too much of a struggle. I wish I knew what causes that terrible stiffness that settles in over night, but not waking feeling as though there isn’t a joint or muscle in my body that can actually most, was great. I have noticed that stiffness settles in quickly these days, I don’t get it during the day when I am sat here typing as I suppose I don’t stay totally still, other parts of you shift about as your fingers do the work, but in the evening when I am sat on the settee, I freeze up. As little as an hour of sitting watching TV and standing is a struggle as are the first few steps. Walking across your living room like a centenarian isn’t exactly the image that I want my husband to have of me, but he sees it daily. My mobility varies all the way through the day but it is the evenings that I always seem to be the worst. My legs are heavy and stiff, they insist on trying to move without bending and my left foot always drags just a little, but often constantly. I have also noticed that if my stress levels rise as they do when going somewhere like a hospital, everything falls apart, but most noticeably if I am asked to walk or talk. All understandable but why I turn into a total cripple every night, is just annoying, OK I’m tired, but that varies, the level of immobility doesn’t and all I can blame it on, is my settee.

With so many different sites on-line to keep going I seem once again to have put myself to the limit of what I have time and energy to do. It is almost as though I’m not happy unless I am being stretched to my limit all the time. I know that that is something that I have always been good at when it came to any job I had, but you would think that now I am free of such things that I would slow down and just relax a bit, but I really can’t. I guess it is all part of a need that we all have to feel useful, there is so little that I can do that finding a way to pass on my life experiences and to amuse others with pictures and so on, has given me a purpose, something that I would recommend to anyone who is no longer working whether that is because of illness or through retirement. In many ways my day is spent on what some would call my ‘hobby’, sorry I hate that word. To me a hobby is something you dabble at, not something that you commit time and real effort to. I used to do a lot of handy-crafts many that people over the years had suggested I did to earn money, which was something I just didn’t want to do at the time, if I had the dexterity and eyesight now I would, but they weren’t hobbies, I did everything to the highest level I could. I have seen handy work from so many others that is totally beautiful and above the level of dabbling, the word hobby would be an insult.

Having a feeling of a purpose seems to be something really important to the human psyche, and I totally believe that without it we all fade quickly. There is though something that I think is missed when it comes to all the therapy groups and classes that I have seen that are available to OAPS and the ill, and it is an important thing. It has to be something the person actually enjoys doing and wants to do! Years ago I was unlucky enough to spend a couple of months in hospital and they insisted that I had a go at weaving the top of a small stool in gaudy colours and cheep looking string. I hated it and the therapy angle was lost as that hour each day didn’t help, it made me angry and depressed at that thought I had to do it. Even recently I saw a program were OAP’s were collected up by bus taken to a Church hall and sat a desks doing really bad handy craft and most looked as miserable as sin. Those that looked happy were the ones that were chatting loudly and producing little at all, for them it was company, for the rest I could seen nothing positive at all, to me it showed do-gooders doing no good at all, but still patting themselves on their backs.

Finding purpose is so individual, there isn’t a book filled with suggestions for a very good reason, for most people, not one of the suggestions would fit totally their requirements. Having said that though I really think it is an area that if more work was put into it, it would save the NHS and social services a fortune. Having a purpose hasn’t made the pain or anything else go away, but it has stopped me slipping into a depressive state and vegetating with nothing but what is wrong with me to think about. In turn that has meant that I don’t need drugs and visits to a psychologist and all the costs attached to that.

Wheels for the brain

I am still finding staying awake a little on the hard side just now, last night just like the last few I was in bed before 9:30 and still asleep when the alarm went off, add in my 2hrs in the afternoon and well my awake time is becoming very limited to say the least. When awake I feel drained and given the freedom that I don’t allow myself to simply climb back into bed, that is were I would be right now. I know a lot of people really don’t understand why I won’t give in and just go to bed if that is what my body needs, I have spoke before about the routine that is needed but it is also something else and that is maintaining normality. I really don’t want to turn my world up side down and sleep odd hours, I have a need to stay in line with the way my life has been for the majority of my life. The only time I changed it was due to work, when I was a DJ I worked mainly between 7pm and 3am, so I had to switch it but as soon as I gave up that life style I set my alarm for morning and that is were it has stayed. I have a need to still have some discipline in my life, to have set times to do things and for those time to be what I would call normal. I might have it totally wrong but I really think if I let my illness dictate how much time and when that time is to be awake, I would be finding everything harder and harder.

I suspect part of the reason I fight to stay awake is that I am very aware there will be a point when I won’t have the strength to actually fight it, and at that point I will have to give in. I think that I may push myself to do a lot of things for that reason, simply the awareness that one day the choice will be gone and there is a huge desire not to give into it before that time comes. I suspect there is also a large amount of wanting something to be NORMAL, I really hate that world but there is often no other that I can replace it with, yes I want things to be normal.

I have been very much forced over the last couple of weeks to admit that I am past the tip point, I think in many ways it has been harder to admit that than it was to admit I had hit the point where I needed a wheelchair. I had struggled for several years to get around on my own two legs and a walking stick. Where I worked was a standard call center, a long room that I couldn’t walk form one end to the other without having to stop and rest, if when I finished work I couldn’t get a taxi, I was stranded trying to stand until one became available, and I had turned myself in to almost housebound as I couldn’t entertain the idea of going any where due to pain and exhaustion. It is hard to admit you have to give up your legs for wheels but I can assure anyone that is facing that right now that they should stop fighting and just take it. It really changed my life, it was the most wonderful thing I had been given for years.

Admitting that you are now mentally not up to surviving everyday life is much harder, there is no gadget that can help me like my chair did, this is harder because the world can’t give me something to make up for what I have lost. Unlike being unable to walk when I just stop because my legs have had enough, I can’t stop my brain rest it and start again, it just doesn’t work that way. I can see already that as I have tried all the normal memory prompts and gizmo’s and I have gone past being helped by them, I am on my own in many ways. I thought about having someone coming into the house to help me with somethings but don’t need physical help I need a brain that works, someone being here would aggravate me as I wouldn’t feel able to do what I do when I want to. I would find having to talk a trial and I would fret about my home not being perfectly correct and tidy all the time. So I am stuck! As I said I am over the tipping point but still holding on with my fingernails to prevent a fast slide downwards. Without doubt this is the hardest thing I have come up against and it is going to take time, a lot of time to know how I get round or past this. How this will unfold only time will tell.