There is always an answer

We all know the major things that make our lives difficult. The pain that takes away our daily pleasures, and the fatigue, that stops us doing all the things, that other people do. The spasms that cripple our legs, or the muscle weakness that stops us from walking. All the things that we list every time we go to see our doctors, but it isn’t always the major things that make our life difficult. Sometimes, I think we become blinded by them. We forget about those things that have become everyday, the things that happen so often, that we dismiss them as unimportant. It’s now nine years since I lost complete use of my left arm and eight since it returned to a state I call functional. I am so used to it, that I pay no attention to the problems that it causes me, but I have begun to wonder, if, I did deal with those tiny things, might it just make life easier in general.

The death of my arm was the initial event, that led to my being housebound. When you can’t manage to walk any distance and are reliant on a manual wheelchair, not having one arm, means not being able to go anywhere. At first I did as everyone does in that situation, I wore a splint. Splints don’t make a dead hand work, it just stops it from flopping around and being hurt for no reason. I was lucky, I could work from home and that was exactly what I did. Over the months, my arms slowly returned, I could remove my splint, but it was never the way it once was. There was and is, still a general weakness and my grip is less than a child could manage, but I cope. Well, that is at least what I tell myself. When I leaned on my wrist the other day, in an attempt to push myself up off the bed, it collapsed, nothing new there, but annoying. For some reason, it set me thinking, just how many times each day, does that arm cause me problems?

It is about four months now since I was forced into returning to life in my wheelchair. My legs have stopped me from walking even the pitiful distance such as the length of our living room. I have often found myself feeling almost stranded at the end of the day, as both my arms become too weak to move at any speed. In fact, just managing that initial shove into motion, is often a daunting prospect. I had been blaming it all on general fatigue, occasionally, on muscle fatigue, not just of one arm, but both. My thinking about my left arm made me notice that part of my problem, wasn’t just the major muscles, but was linked directly to my left hand. My left arm is causing me to work twice as hard, for one simple reason, my left hand, isn’t up to gripping tightly the push ring on the wheel of my chair. When I try to push, my hand is slipping. A lot of the time, I am compensating by pushing with my right arm, and simply guiding with my left, pushing against the wheel, so that I go on a straight line. It may sound like a tiny thing, the sort of thing as I say, that we simply brush off because it’s the way it is. But does it have to be?

A few minutes thought, and ten minutes on Ebay and I have the solution. Now on its way in the post are some wonderful little self-adhesive strips, intended for either stopping clothes slip of hangers, or to put on a shoulder bag handle to stop it falling off your shoulder. In my case, they will go on the underside of the push wheel, and I will no longer have to feel my hand sliding along the metal, doing nothing of use for anyone. The hope line is as follows, less wasted effort, less wasted energy, less exertion being used by both arms and, therefore, less pain, and a general improvement in my fatigue. If I can use my hand correctly, it might also reduce the spasms I get within it and the number of times that my fingers slip out of their joint sockets. It might also mean that the right muscles will be used regularly and will improve their strength. Hopefully, in time, their strengthening will mean they will stop collapsing under my weight. What I have bought, is a tiny thing, it cost me just £11, but it could change a lot.

I can’t help thinking that if we all didn’t just accept that our lives have to be this way, if we searched for the root of those small problems, that we could all make those much-needed tiny changes, that could change our lives in much bigger ways. The longer that we are ill, the more we accept. Accepting our condition is one thing, but accepting what it does to us, is a totally different thing. We are so determined to manage, so adamant to show everyone that we can cope with the world as it is, that we forget, it doesn’t have to be that way, that there are ways of making the able-bodied world work for us. I have reached the point where I have had to accept making changes, installing grab rails and so on, but they are the obvious things, they are the things that any disabled or able-bodied person would know about. I’m sure that there are many tiny things in our world, that all it takes is thought, to fix, rather than accepting. I have hopefully just fixed one, but I am sure, that there are a lot more that I can equally change if I just stop accepting those apparently small irritations. So think about it.


Please read my blog from 2 years ago today – 09/03/2014 – Tough love or life

I woke feeling like death this morning, I haven’t the slightest idea what was up but I was ever so glad that I had both anti-nausea tablets and painkillers to hand. I felt so sick and I there was terrible pain in my right side in the lower section of my ribs, most people would probably have just gone back to bed, but because I could treat it, I could stay up. That was 3 hours ago and although the pain is under control I am beginning to feel sick again. I doubt there is anything really wrong…….





Instinctive training

The first set of grab bars arrived yesterday afternoon. I have to say that I am rather pleased with them, even though they are just the suction cup type, they aren’t as unpleasing to the eye, as so many that I have seen. Of course, they still appear bulky, but they are at least firstly chrome coloured and have soft black hand grips centered on each bar. It wasn’t just there look that made me buy them, but the fact, that beside each suction cup, there is a tiny indicator which changes from green to red, should the suction not be tight enough. Like a lot of shower units, ours has two glass walls and which are, of course, the best position for hanging things like our body puffs and so on. We are therefore perfectly used to hearing the hooks giving way and clunking into the shower tray. The ease that suction cups give way had worried me from the first time I heard that such type of grab bars existed. The image of reaching out to use one, and crashing to the floor, with it in my hand, had entered my mind more than once. I’m hopeful that the indicators will mean this just won’t happen, but only time will tell.

It doesn’t matter how much you know you need these sort of adaptations to your home, it is actually a really big thing, to have to buy them and as I know, even harder to actually let yourself use them. I know that it took me several months, to actually fold down and sit on the shower stool for every shower. Even now, on a good day, I will stand for part of it if I can. No, this isn’t just about ego, it’s about so much more. In the case of having a shower, it has a great deal with how you shower. The routines and habits that you have learned over the year. Sitting down and cleaning yourself, isn’t as easy as you might think, especially when it comes to your back and well, obviously, the area’s you are sat on. Unless, you want to be constantly standing up and sitting down again, which is tiring and in itself dangerous, you have to break habits and wash there first, before sitting. No matter what you do, you still have to stand and rinse yourself once more while standing, to be sure all the soap has gone. At first, the seat seemed more a hindrance, than a help. Not only was sitting in the shower, just wrong, it did on top of all of this, hurt my ego. It’s a tool, and just like a walking stick or a wheelchair, you have to adapt to it and that always takes time. Without a doubt the bars will make showering safer, but, I will have to adapt, again, into using them.

Like most people, able-bodied or disabled, I have my own fair share of gizmo’s and gadgets that I have aquired, think they would make my life easier. Like most people, the majority of these wonder objects, have been packed away, never to be seen again. Aids are just the same. If they don’t work for you, if you don’t like them for whatever reason, you don’t use them. My first piece of advice I would give to anyone who has decided they need something to help them, is to look for not only the right aid, but the way that it looks. I know that we all need to look at price these days, but if the difference between the one that will just do the job, and the one that your like, is small, go for the one you like. That’s another one I have learned the hard way. It makes no sense what so ever, buying the one that will do, if you land up hating it and not using it. Yes, for £5 less each, I could have bought plain white grabs for the bathroom, but every time I entered the room, I would have cringed. I would have hated them so much, that I would have died everytime a visitor asked to use my toilet. It’s also a fact, that the more you hate something, the less likely it is that you will use it. I would also have seen the one thing I have fought hard against, a hospital. This is my home and it has to look just like that, a home. Trust me, a grab bar, isn’t a grab bar if you totally hate it. No, I don’t love them, but I don’t hate them either.

Years ago, even before I was diagnosed with Fibro or PRMS, I developed a habit that few noticed, I always walked close to walls. No, I wasn’t shy, I knew there was a problem with my balance. There was in my mind a safety in being a wall-hugger, I still am as it’s now an instinctive action, one I that developed after a few embarrassing falls. On bad days, I dreaded having to cross any open space, being outside and worse still having to cross a road, was a total nightmare. The doctors kept telling me I was fine, but I knew that I wasn’t. Back then, I had clear good days and bad one, unlike now when healthwise, it’s only bad. Back then, I also always had some notice, I felt it building and I knew pretty much, when I was safe or I wasn’t. It wasn’t my legs, they worked fine most of the time, and balance issue are quite different. As time passed, the good and the bad blurred and the walls and furniture developed a permanent magnetism for me. They became part of my instinctive life. I had learned their value and the safety they offered me.

It doesn’t matter how much of a problem your legs are, or even your balance, if you have spent your entire lives using them, that is still what you expect to be able to do. Doing something like standing up, or walking is an instinct. If you can take one step unaided, no matter how dangerous, you do it without thought. I know every single time I stand up, I am now in danger. That doesn’t mean that I have the brains to hold onto something that is there, just in case, something goes wrong. Because of the way my legs fail, I should. I should never move without holding onto something or being in my wheelchair. I know all that, but instinct is a truly hard thing to fight. That first or second step that I take can be the very step where my legs just vanish from under me. When they do, it’s too late to try and reach for the thing that’s there to save me. I’m already on my way to the floor, and too far from what was there to save me, to hold me up and allow me the time I need to recover. Yet still I take those steps, the steps I have to take, between one chair and another, and where are my hands, well not where they’re needed to save me. Instinct can only be broken by training, repeatedly training, the training I frequently forget to do.

Becoming disabled due to a progressive illness, isn’t like flicking a switch. It’s slow, so horribly slow. In my head, I can do anything, I am still the person I was when I was 20. Unfortunately, there isn’t a single part of me outside the tiny part of my brain that thinks, that is in fact, anything like what it was when I was 20, or as when I was 30 or 40, or even last week. My problem really is that tiny part of my brain. Someone could arrive here tomorrow and install, tastefully, it would have to be tasteful, ever aid I might ever need and the day after, I probably wouldn’t use a single one. Trust me, it would be exactly the same for you. We don’t think about what we are doing, we just do it. It isn’t until the second something goes wrong, that you even think about it. I long ago stopped counting how many times I have found myself on the floor. Not even the knowledge that once I am down there, and there is no way on this planet I can get back up again unaided, changes nothing. Nor does the number of bruises or scars I have received. Just like a child, I continue to act as though nothing has happened, not because I am stupid, nor my ego, but simply because I am human.


Please read my blog from 2 years ago today – 04/03/2014 – Unsolved problems

I didn’t sleep last night as well as I could have, I kept waking because of the pain in my back. It’s a pain that appears from time to time, I think because I always sleep flat on my back, not the position that most people seem to. Years ago I know I went to sleep on my side and once asleep I rolled to my back, but the bed also showed that I did move around a little, these it shows I don’t move a……






Changing our health thinking

My pulse rate and oxygen monitor arrived yesterday and so far it has been an eye-opener. The maker says that it can be accurate within a 2% plus or minus range but even allowing for that, I have been rather surprised. A normal oxygen level is seen as anything between 95% and 100%, for one brief measurement I did hit 98% for a few seconds, but it didn’t last. I have been putting it on and off my finger at different points throughout yesterday and this morning and it appears my normal is between 90% and 94%. This morning I have been checking every 15 mins since I sat down here at my PC, it is solidly at 90%. The highest it has been and stayed there for a few minutes was 95%, but again that didn’t last for more than about 10 minutes then it dropped again. The best results have always been just after I have been up and about. The muscles in my chest often seem to be less tense during and after what is the closest I ever get to exercise, walking back and forwards through the flat. Every result that I have achieved over 95% were all straight after I had been on my feet. The longer I have been sat, the worse the muscles seem to get and down goes my oxygen levels in line with it.

Lying down is a great trigger for my chest muscles going into spasm and just before I go to sleep, I often feel really odd. I also have odd sensation in my face, hands, and feet. Basically, it is an intense tingling. What’s odd is that I get what feels like a twitch at the end of my nose and the triangle formed by my nose and mouth is the most intense area and often feels somewhat cold as well. There is often a buzz in my head and I sometimes even feel sick. I took the monitor to bed with me when I went for my afternoon nap and luckily, my body co-operated. My diaphragm and intercostal muscles started to tighten, the sensations quickly followed. Although it is on the edge of sleep I pulled myself back and looked at the monitor I had placed on my finger when I first lay down. The reading was 82%. I know that a one-off means nothing, so I settled down to repeat it last night. Nothing happened. I had to give up after 20 mins as I needed to go to sleep, but it was the first thing I checked when I woke to find it was at 89%. Those are not good results in anyone’s book. Although the opportunity hasn’t appeared yet, I often feel sick during the day. I know that it is one of the symptoms that goes hand in hand with my MS, but I think it might be worthwhile testing during the next spell that occurs.

I have less than 24 hours of checks, but even if it isn’t as accurate as hospital monitors are, it still shows that what I believed is true, my oxygen levels are low and all over the place depending on the tightness coming from my spasms. It does though cause me one of those quandaries, do I tell the consultant what I have been doing, or do I just tell him how I have been feeling, as that is what prompted me to buy it? I know from experience some doctors really don’t like us doing things like this. They seem to see it as their job and not something we should even be thinking about trying to do at home. Mind you, I am sure that they are more than aware of the fact that these monitors are now available and at a price most people can afford. That though doesn’t make the answer any easier.

The monitor of course also shows my heart rate, not that I think there is anything wrong with my heart, but it has been just as interesting seeing what it’s results have been. So OK the results could have been better, everyone’s could be better, but taking into account that I have spent the majority of my life sitting down for the last 10 years, a resting heart rate of 84 – 88 doesn’t seem too bad. What I was impressed by though was how much I could make it fall by just using my relaxation techniques for a couple of minutes. I have brought it as low as 78, but it jumps back up almost as soon as I stop, it’s not as though I really needed any proof that it’s works, as I knew that anyway, but there is the evidence if it was needed by any doubters. I think it could be quite interesting to test that one on a longer time scale as I really wasn’t looking at it when I was lying down. As you might have guessed, I am rather taken by my new toy. I really do love anything that measures, quantifies and proves anything. It could be why I so loved my last job, working with stats and building computer programs that made getting those results fast and efficiently, was right up my street. My analytical nature has been limited to my body for the last few years, so having a tool that helps, just makes things more interesting. I wonder what I could find out there if I looked?

I am sure if you asked a doctor that they would say that none of these monitors that you can now buy online, nor any of those health kits, are a good buy for anyone. I understand their concerns, as without the knowledge and research behind what the results can really mean, could cause a lot of distress for some people. I see things like the monitor as actually totally the opposite. When you know, I mean really know, once you have a diagnosis and you have spent time reading and absorbing medical sites as well as those intended for patients and their blogs. I believe gadgets actually put your mind at rest. That was what drove me into buying it in the first place. I have been feeling so ill and so wrong at times and my worry levels, which, of course, lead to stress, were high. I needed to know. Strangely, like most people, I don’t have a pet doctor in my cupboard. Not so strangely, doctors don’t like you calling ever thirty minutes to talk about your symptoms, especially in at three in the morning. If there are gadgets that can actually show you how whatever part of your body is worrying you, is working fine, how can that be bad. And if it shows you that you have something wrong that needs more investigation, well again that has to be good, as you are not blindly putting up with something that needs treating. I do understand their fears that we start self-diagnosing and then self-prescribing incorrectly. but that is a long way from what I am talking about.

I know that there are a lot of things that the conditions I have can cause problems with other areas and organs in my body. For example, COPD can actually cause huge problems with your kidneys. If there was a simple test that I could do, that would show if there was a problem forming and that I needed help, rather than my blindly going on until the damage is done, I could call the doctor. To me that is perfect sense, I think it would be to most people in this world who have COPD. By the way, my oedema isn’t even bad enough just now for me to bother taking my Furosemide. I am not a doctor or a nurse, but I am also not stupid, show me and I learn. With the medical system under such strain these days, I would have thought that any testing or even just monitoring, that those of us with chronic illness could carry out at home, that would mean we didn’t keep returning to our doctors, would sound like a good idea to everyone. I am sure that most of us are capable of taking our own pulse and blood pressure supplied with the correct and what are now cheap tools. I don’t know what the cost of a visit to our GP or even practice nurse is to the NHS, but I bet the amount of visits that many seem to have, would pay for them quickly. Rather than visiting the practice weekly, their visits could be reduced to monthly, or even reduced to just a phone call. On top of that, being in control of your own health, is empowering and that always makes you feel more positive about the whole thing.

I think the time is coming where we all have to start thinking about what we can actually do for ourselves, rather than what our doctors have to do for us. Yes, there will always be things we can’t do, but we are more capable than many of us think. It is not just us that has to accept the changes that technology has brought to our fingertips, doctors do as well. It is a matter of just getting used to it and accepting it as part of normal life. We and Doctors have done this in the past and we can all do it again. Think about it, when did you ever hear a doctor complaining that we aren’t capable of using and understand a thermometer, most other health monitors are no more complicated.

P.S. I have just been reminded that not everyone who reads is from the UK. I should have added this, an answer I left to a comment….

“In the UK we have the problem just now that our doctors are over whelmed. In some place you can’t get an appointment for up to a month. It has meant people presenting a the emergency department and overwhelming hospitals. Frequently some have had to close their doors for several hours to all emergencies. It is a huge issue in the UK.

The NHS can’t even find enough GP’s to cover some areas in the country at all. Reducing their work load is needed quickly as too many are leaving the profession as they simply can’t cope working 70 plus hours a week. Not to mention that the government now want’s surgery to be open 7 days a week instead of just 5. Something is needed and needed now.”

Please read my blog from 2 years ago – 06/09/2013 – Accept the mess

I really hope that I am not speaking in advance of something else going madly wrong, but my PC is now working, updated and back even better than it has been for months. I suppose all of us have that one item in their home that if it wasn’t there, they simply wouldn’t know what to do with themselves, well as you may have guessed this baby is mine. It really is total madness that as sentient……