Certain uncertainty

Sometimes things happen that we can’t be totally sure why. Things change all the time, that is just a fact of life, but what I am talking about here, is something that could be or could not be connected to something else. If you have read for a while, you will be well aware of the problems that my PRMS and COPD combined have had on my breathing. I was sent by me GP, just over a month ago now, to see my COPD consultant as my breathing and oxygen saturation were getting worse and worse. The majority of my breathing problems are really caused by my PRMS, it thinks it is funny to tighten and collapse both the external and internal muscles that are connected in the motor actions required to breath. Trying to get air into your system when you diaphragm and intercostal muscles are clearly in spasm, is hard enough. Add in the fact that the internal structure of your lungs is not strong enough to hold their shape, well, you get less and less air in each breath. Before I went to see him, I expressed several times, a concern about the fact that I often felt as though my brain wasn’t receiving enough oxygen. I was more confused, more muddled than usual, and I kept getting terrible headaches, especially when I first woke in the morning. When I left the hospital clutching a nebulizer and a prescription for a steroid inhaler, I wasn’t convinced that they would change much. Yes, I understood that their purpose was to keep my airways as clear as possible and as open as possible, but I couldn’t see how they could help when my lungs were being crushed.

So here we are over a month on, I have to say that I am totally surprised by the improvement. I am a long way from what I would call normal and no, they don’t stop the struggle when I am being held tightly in what feels like a corset. When things are really bad, I am still only managing just around 88% saturation, but the rest of the time, things feel better. I even managed to peak at 97% the other day, it was only a peak, but that is almost normal. I kept a close eye on it the other day and I was actually disappointed to find that my average had fallen to 92%, one down on where it was before. The figures don’t add up with how I feel. I haven’t woken with a headache nor have I woken feeling muddled, for nearly two weeks, and I actually feel, as though my breathing is just that bit easier. It’s not as though I can take any deeper breaths, or hold it for a longer length of time and as I described the other day, there is actually a new addition to my bodies determination to not let me breath. Feeling better just doesn’t add up at all to what the figures and my body is actually telling me and doing to me. The feeling that most of the time my lungs are under attack hasn’t changed, but I knew it wouldn’t. That would have taken something that would undo and change the damage done and is being done by my PRMS, but I still feel better. I can only guess that the twice daily treatment with the nebulizer and the steroids are really helping to build up and maintain the internal strength of the air sack structures. Somehow, they seem to be able to withstand the crushing just that little bit better. I am no doctor, but when the pressure is almost the same, but the actual air reaching my system seems to be more, well it is to me is the only logical assumption, that could explain how I feel. I still have another month to go before I go back to the hospital, it will be interesting to see what happens during the second full month if anything. All I really want is to see that oxygen saturation rise.

Three weeks ago, I woke in the middle of the night because I had two really painful spasms in my left foot. One was crying out at my from my instep and the other had a total grip on three of my toes, little one inwards. I had to sit-up to deal with it, but as I pulled my leg out from under the covers, the movement triggered a third, screaming upwards over the top of my foot. It wasn’t something that I thought of note at the time, it was just another set of spasm, ones that once massaged and stretched in every direction possible, cleared. As often happens, over the next week, the one in my toes and in my instep came back, as if to just remind me how painful it really was. I have never really worked out why spasms do that. The milder ones, just vanish, not never to be heard from again, that would be bliss, but the severe ones, they always chatter on for a while after, a little like the aftershocks that follow an earthquake. I couldn’t help but notice that every time I put on or took off my socks, my toes were always numb. It didn’t bother me at first as I never felt it any other time. Then last week, that changed. I could feel they were numb every time I stood up and whenever I took a few steps, the only ones I take these days. On Wednesday, I was suddenly aware that it was spreading. I was now numb not just in those three toes, but for about two inches above them into my foot, both in the sole and the top of my foot. I have been warned many times in the past that I should be careful with my feet, especially as I refused to wear shoes. The MS nurses and OT’s worried that I might cut them, and not having a great deal of feeling in them as it was, that I might not notice a cut and it could fester without my knowledge. The irony doesn’t escape me, here I am now a full-time wheelchair user, and suddenly, my foot has decided to start dying on me.

I am more than used to having different areas of me vanish, or have that numb feeling, but just like spasms, they don’t normally last that long. That was what happened yesterday evening, my entire left leg from half way down my thigh, right down to my toes, joined in with that totally numb feeling. Luckily, numb isn’t dead, it more a sensation of numbness, not quite as dull as you feel after a local anesthetic, more the feeling that follows about an hour later. If I prod at it, well I am aware that it is being touched, but it is an odd sort of spongy feeling, even when I press something pointed into it. It lasted about an hour or so, then slowly it returned to almost normal. I say almost, as since then my calf muscles have been tingling and the majority of the sole of my foot, is not totally numb, but dulled. I have to admit to being more than a little concerned. I may not walk anywhere any longer, but I do still need both legs for transiting from my chair to any other location. Last night, that nearly failed as well. I was in the bedroom after making a midnight trip to the loo and I stood up. Just as I was about to lock my knees, both legs started to shack, with clear tremors above and below both joints. For a fraction of a second, I thought I was going down, that instead of the bed, the floor was going to be next location. Then normality returned and I pulled myself upright. I don’t know what caused it, but it left me shaken, as it has never happened so strongly or so clearly. I have spent so many years worrying that I would lose my legs. Years, of fear and sheer panic about the whole idea whenever there has been mild numbness. Now, that it is closer to reality than it has ever been before, I am concerned, but somehow calm about it. I know all to well that it might come to absolutely nothing, that in a couple of days, normality might have returned, but right now, it’s my new reality.

I think that is something a lot of people miss when they think about chronic illness, we never know what is going to happen next. That things are always on the move, doing this. or that one day and something totally different the next. You never know if it will last minutes, hours, days, weeks, months or forever. Each new event could be your reality forever and all you can do is wait and see, wait and hope, wait and find out. Our entire lives are a waiting game. Waiting to see what happens, if any of those symptoms you know about, but haven’t had to live with yet, might just appear. Waiting to see if you will reach all those worse case scenarios, or any of them at all, waiting to find out, just how long you have to live. Nothing is certain, nothing is ever guaranteed, other than the fact that we just don’t know, we know nothing, other than what has been and what is. Our lives aren’t about the future, we can’t plan that, as we can’t even plan the now, with any certainty at all. Right now we have the body we have, right now we have the brain that we have, but an hour from now, we might have neither or a completely different configuration of both. Uncertainty is the only thing that is ever certain and despite all of it, everyday life goes on.

Please read my blog from 2 years ago today – 31/10/2013 – Vanishing lifetime

I went to my bed last night at 7:30, exhaustion had made the whole day difficult to get through and when Adam came home I told him then that I really needed to sleep. I sat up for another hour as I wanted to spend some time, no matter how…..

Don’t dismiss anything

Tiredness is a funny thing, the way that one second I can feel fine, and the next I want to crawl into my bed and never get out again. I know for me that it isn’t just a need to sleep, this kind of tiredness comes from a fatigue. Fatigue used to just be that feeling that my limbs not only couldn’t do anything, they were quite simply dead and I needed, no, had to rest. Over the years, I discovered that sleep wasn’t the answer, it helps, but it isn’t the answer. I could sleep forever, but fatigue doesn’t go until it is ready, it just builds and builds. The longer you live with it, the more it grows, somewhat like an ever rolling snowball, it picks up just the little bit more every day. I know that I have written a post before about the difference between tired and fatigued, and if I say so myself, it was a great post. So why return so soon about something that was written well and describes it fully? Well, because, that post was about that dragging fatigue that holds onto not just our bodies but almost our souls as well. This is about muscle fatigue, something quite different, but without a doubt, rolls over into the more major form.

Recently, I have been finding myself floored but unable to sleep and I don’t remember that happening for years. I still sleep perfectly at night, but it is the afternoons when I now often find myself lying there in a half world. I am on the cusp of sleeping, completely relaxed, but I am totally aware of every inch of my body. I can feel each part of me, even those that appear to be missing and all of those that have their own individual sensation.  My body is alive with areas that are numb, others tingling, some that are both and other that are causing me pain. There is nothing there though that is enough to stop me sleeping, but it just doesn’t arrive. It has nothing either to do with my thoughts or an overactive brain, mine is rarely that, but there I lie, with a completely exhausted body, that is craving to just be allowed to shut-down. In the past, I have tried using relaxation techniques against fatigue with little positive effect. Not surprising really, as fatigue, has nothing to do with anything one would call normal, it is far more than tired, far more than muscles that have just been used too much. Neither sleep nor relaxation seems to be a cure for fatigue, it is more a sticking plaster that lets you forget about it for a while.

A few years ago, if you had suggested that I should go to bed and just lie there for an hour or more. doing nothing, I would have refused point blank. My refusal would have been heartfelt, as there was nothing I would have found more difficult, or more horrific a thought, as wasting an hour, lying around being bored. Even if I had tried to, the boredom would have driven me mad in less than fifteen minutes, I would have been up again. So for me to be able to say, that I can now do this with ease and that I actually enjoy that hour of lying there doing nothing, something major has to have changed. It is the absolute truth, that nothing that has happened to me in the past year has surprised me more than this, but there it is, I can now do it. Clearly, I have made a discovery, something that has allowed me to change so dramatically, and yes it does have something to do with fatigue. I wouldn’t go as far as saying that I have found a cure, but I would go as far as to say, I have found a real sticking plaster that soothes and doesn’t just distract. I’m not going to lie, I wasn’t looking for something to help, I was just looking for sleep and I was working through my relaxation technique in the vain hope of finding sleep, but I found something else.

I have to admit that I have been holding back on writing this, because it does sound kind of silly, but it has helped so many times now, that I feel it’s only right to share it. I had gone to bed one afternoon and my hands were really bad, painful and heavy the typical fatigued muscle feeling. The second I was settled in bed, they started that intense tingling that is just one click away from painful. I had already earlier in the day been sat at my PC, stopping every now and then to massage them, as they felt so knotted and tight. For me, massage is something that rarely helps anything, other than spasms, but it is one of those instinctive actions that you find yourself doing, whether it works or not. When I couldn’t find sleep, and my relaxation system hadn’t worked, I found myself lying there cursing my hands. They were so alive with sensation, that I was sure they were what was blocking my sleep. I decided to work on them again, but this time, instead of just mentally relaxing my whole hand, I went finger by finger. When I reached the ones that hurt the most, I added in what I can only describe as mental massage. In my mind, I imagined gently massaging the muscle and adding rays of warmth. I could think of no reason why it would work, it was intended more as a way of keeping me from getting up, as I knew I really needed the rest, even if I wasn’t going to sleep. To my surprise, when I had completed my entire left hand, the level of complaint, honestly seemed lower, not gone, but a bit better. There was a marked difference between the two hands, that hadn’t been there before. I did the same exercise on my right hand with the same result. I had purposely done all this very slowly as I was time filling after all. When the alarm sounded, I got up and thought no more about it.

Usually in the evenings, I find my hands incredibly painful, especially since I have been in my wheelchair. That evening, yes, they were still painful, but there was an improvement, I didn’t link it at all, until a couple of days later, when the whole thing was repeated, as it has been multiple times since. I decided to test it out on not just painful muscles caused by use, but highly fatigued ones, it works with them too. I have analysed and worked through the whole thing and now, I don’t bother with the imagined heat anymore, that I think was just silly. What I have done, is to have come up with what I think the reason is, and the system that makes it work. I use my relaxations system frequently, so I can now use it with speed and efficiency, for going to sleep. By slowing it all down and really concentrating on making sure that every muscle, rather than just whole limbs, are as relaxed as they can be, not just enough, but totally, is what is reducing the pain. I am more than aware that the technique I use, is used widely, and I am sure that many who use it, like me, has become skilled at relaxing at speed. I suggest strongly, that you slow it down as like me, you might actually be missing a benefit that is there waiting. It is a long way from a cure for fatigued muscles, or that dragging fatigue that goes much deeper, but it is a help, a really good amount of help that makes it worth well. So much so, that I now go for my nap, not caring if I sleep or not, as that hour and a half, is of benefit either way.

I am so convinced of it’s benefits that if I find myself aware of aching muscles during the day, that is now my first stop, rather than just putting up with it. It isn’t a miracle cure, but it does make life just that bit more comfortable and that to me is worth the time I lose. In the past couple of months, all I seem to have done is to slow down everything that I do, to take more rest, relax more and generally, take life at a smoother slower pace. Every time I have tried this in the past, it just hasn’t worked, I guess that I just wasn’t ready for it to, well it does now. It appears, that no matter what it is, just because something hasn’t worked before, isn’t a reason to say it doesn’t work at all. I would strongly suggest that even if you have tried any relaxation techniques in the past and dismissed them, try them again and even again, you might be surprised by what you discover.

Please read my blog from 2 years ago today – 30/10/2013 – Avoiding depression

I have always been someone who likes to live life with challenges, to have lists of things to achieve and to work on, not for money, praise or anything else, other than self-pride. I have lost count the number of times in my life people has asked me….

Sorry for who or what?

Yesterday, I received a comment that ended with the line “I’m just sorry, nothing anyone can do or say will help.” It’s a line that holds all the things that we as people who have chronically illness, hear the most but feel to a much greater degree than anyone who ever says it. I’m not implying that the person who wrote it didn’t mean it, but when I read it, I felt what I always feel, a desire to scream. In a way, it actually summed up part of what I wrote yesterday quite well, that situation where it all feels futile, but we all know what we will do is be politely nod our heads, obediently do as we are told, then walk away, inside screaming. If there is one thing that I hold onto, is the fact that my illness isn’t just physical, but mental as well. My greatest wish has always been that my brain will degenerate at the end, faster than my body does. I don’t want to be trapped the other way around and I have said that from day one. I have always found it somewhat ironic, that two of the things that I prize greatly, that have gained me a living and driven my life, my intelligence and analytical nature, were actually going to be the thing that would cause me the most pain. I have spent so many years self-educating, improving my knowledge about everything I could, but it was going to turn on me and make my life harder. I hate to say this, but if I were as thick as two short planks, well this illness, would be a completely different story.

I have spoke to so enough doctors over the years, to know that one of the things they are skilled at is judging just how intelligent their patients really are. I remember quite clearly, the day that I was given my full diagnosis. The doctor who was sat across the desk from Adam and I was younger than me, and he didn’t look me in the eye once when he read out the full list of all the conditions that had been confirmed over the years. He didn’t even stop long enough to take air, very much giving me the feeling that I was allowed to interrupt or question, he just wanted to deliver the news. He actually reminded me greatly of a news reader, but they although miles away, at least try to engage their audience by looking down the camera, he just sat there reading, eventually reaching the punchline, my new condition. When he did eventually come up for air and ask the question “Do you have any questions?” he did it whilst giving the briefest of glances at both of us. Of course we didn’t have any questions, we hadn’t been given time to think, but that was just what he wanted. He stood up almost immediately and announced that I would get a letter soon to see my consultant and that a copy of what he had just read would be sent to us. All said as he hastened us out of his room. As we reached the door, finally the words I had been waiting for appeared, “I’m sorry, there is little we can do for you.” I left feeling that he knew that if he gave me a second longer to think, that I would have a lot to say and a lot more to ask, but his goal was to get this over and done with, to remove me before I could go head to head with him. It wasn’t the first, nor the last time, that I have felt a doctor running from me. Every diagnosis I have ever had, has ended with those words, not always exactly the same, but close enough. What on earth does that word “Sorry” really mean and who on earth are they sorry for, me or themselves, for having been put in the position of doing this again to someone else, or for the fact that their profession has come up short, yet again.

Being ill with a brain that is intelligent, but has been hampered by a condition that has taken more than just the edge off it, is more than annoying. Doctors these days are in luck, the brain still has all its ability, just not when it’s actually needed. In the past, I would have had that doctor verbally pinned up against the wall. He would have gone nowhere until I had asked every question that took the next month to appear. This brain of mine no longer does what it once did, that doesn’t mean that it doesn’t do it at all. In here, there is all the intelligence that it ever held, it’s just shrouded in a mist that is hard to penetrate. That scares me because I know what is happening to me, I know what will happen to me and know all the options. Once that had a purpose, once it was the thing that I thrived on, now, it just scares me. The writer of that comment was right, there is one thing to be sorry for, she also wrote, “Sorry that you’re as smart as you are to be aware of every passing moment and the risks of different care options”. For once, I can say that my mother was right, I am too smart for my own good. It’s a rare occasion that she was ever right, but this time, she nailed it, I am too smart for my own good, I do know too much and I so wish that I didn’t. I never understood that saying “Ignorance is bliss”, it used to really annoy me that anyone could even think such a thing, how could ignorance be anything, other than a waste of a person, now I understand.

All my life my brain has been this sponge for information, drawing in everything it could from any source it could find. School bored me, it was too slow, too boring and too full of rules. Not having a qualification to my name, never held me back for a second, I could always prove myself, I just had to get through the door and once there, I did my stuff. My brain was filled with information that I never understood how others possibly couldn’t know. I knew, where from I wasn’t sure, but I knew, and I had a terrible habit of being right. I have lost more friends in my life than I can count, just because I spoke my mind and delivered correct information, I remember it even losing me one job. Bosses don’t like being told they’re wrong, even when they are and it’s even worse when it’s publically proven. This brain of mine has got me into trouble, I know that, but now it is my turn to be it’s victim, my turn to know what it’s like to be faced with a know-it-all.

When I was first diagnosed, I remember having a conversation with Adam, where I told him, that I believed with all of me, that the best thing to do near the end was to hasten its arrival. He was totally horrified, there is no other name for it, his face and his voice showed clearly the depth of his feelings. We had only been married 2 years when the news arrived that I had PRMS and that our shared life was going to be even shorter than nature would allow. With the age difference, it didn’t take a genius to work out that the odds of him outliving me were high, they had just got higher. That fact didn’t escape him, but the idea that I was proposing that I wanted to take that time into my hands, horrified him. I don’t know when exactly he changed his mind, whether it was the first, second or 100th time that the words, “I’m sorry, there is nothing anyone can do for you” and the reality of my life became clear, but it changed. I knew it would. I knew because he is a caring and loving person, and I knew because he loved me. I defy anyone to sit back and watch their partner slowly diminishing in front of them. Changing from a fit and agile person who loved to be active, who walked everywhere, hardly sat still for more than a minute if something needed to be done. Watching them change almost daily, unable to leave their home unless carried down the stairs. Unable to even move around without the aid of a wheelchair and constantly in pain. Seeing them clearly becoming more and more distressed by their reality, I challenge them to not change their mind. He has watched my constant frustration at what my body has done to me, but more than that, he has also witnessed my frustration at what my mind has already done to me.

When you know that the information you require is without a shadow of a doubt, there in your mind, but you can’t find it, trust me there is nothing more frustrating. We have all been in that position where the name of something or someone is on the tip of our tongue, but we can’t find it. Well, imagine that happening at the start, middle and end of every 5th sentence. Imagine that happening in the midst of your action, you know you were going somewhere, to do something, but suddenly you don’t, not occasionally, but regularly. Imagine entering a room you have seen daily for years, but now you don’t even know where you are. Imagine your brain, just abandoning you, making a fool of you, deserting you publically and privately, then turning on you, that is how it feels when brain damage takes hold. You’re scared, really scared, not in any way you have ever felt before and not one that words describe with ease, but it holds one final trick, it’s still switched on. All that information, all that knowledge that you have acquired, is still there and it’s not going to let you forget any of it. You are aware, you are totally aware of every pain, of every change, and what it means, and all you really want is to shut it up. That is where I am. I’m trapped in a body that is closing down, with a brain that won’t show itself when needed and has given up on the mundane but takes joy, in torturing me with the reality of my situation. My one blessing is that I still find enough joy in life to keep me happy, but yes, I do fear my future. One side or the other of this illness will win. One side will be the stronger, either I will still have a body, without a brain, or vice versa. Which is worse, well for me without a doubt, it would be the one I picked even before I felt the horrors ahead. If this illness has one once of mercy, it will let my brain die faster, I couldn’t bear to be trapped inside, unable to be understood.

“Sorry”, sorry for who? I am not sorry for me, or sorry for what has happened to me. I am sorry for Adam, for he is the person who really suffers, he sees every single change, he has to live my life, not his. I am sorry for my daughter, as she is losing her mother, bit by bit. I am sorry for all those out there stuck in exactly the same position as me. I am sorry for the doctors, who do all that they can, but are caught for now having to say many times a day, “I’m sorry we can’t help you”,  but I’m not sorry for me. I have had a good life, I have been lucky to find the one person in this world who I was meant to be with. I am lucky that I am loved so deeply. I’m not sorry for me, that I am dying, or the way that it is happening, what is meant to be, is meant to be. If it hadn’t happened to me, I wouldn’t have discovered a skill I never knew I had and one that I love, to be able to write. I’m not sorry that I have discovered that my belief in people has been proved to be right, this world is filled with people who care about people. Don’t be sorry for me, for so far, there is nothing to be sorry for.

Please read my blog from 2 years ago today – 29/10/2013 – Understand changes everything

Yesterday turned in to one of those odd nothing days, a day when it just seemed to run past me and I somehow did nothing but add on to a list of the things I was meant to be doing. The list grew and I still did nothing, it wasn’t as…..

Accepting the risks

I don’t know what is triggering it, but over the last week, I have been finding my breathing at times, more and more difficult. It is almost as though my internal organs have turned to concrete and nothing is moving as it should. I am used to my diaphragm going into spam, and my intercostal muscles clamping in on me, but this isn’t just them. I am also used to my intestine being in spasm and over full, pushing everything upwards, as though it wants the space my lungs occupy, but it’s not that either. It is like all of them doing their thing, but with a lighter touch, then my kidneys and their supporting muscles pushing inwards while my oesophagus and trachea both feeling enlarged and as though they are fighting with each other, for what little space is left. I have tried using my nebulizer, it helps a bit, but it doesn’t clear it totally and the first few breaths are difficult, almost as though I don’t have the strength to pull the vapour in properly, adding even more power to the fight going on in my chest. Without a doubt, staying calm helps, but when your breathing is all out of kilter, it isn’t always the first thing on my mind. I have become used to the tension in my voicebox and the way it takes and gives me a voice at its choice, but when it’s playing up, it too feels enlarged, making the whole thing even harder. But the overpowering feeling to all of this, is one of weakness.

Adam reminded me the other day that I have had a similar episode in the past. He is right, they are similar, but on that occasion the real problem was down to coordination between the processes of taking a breath, swallowing and speaking. Somehow, they had all become muddled up, my voice vanished then too, but the biggest issue was my ability to coordinate them all. Life became stilted and silent, it was easier not to talk, as when I did, I managed no more than three or four words, without having to stop, to swallow or breath. It was proved to be one huge flare, but I landed up in the hospital for two weeks, because I needed oxygen when it was at its worst. They also gave me huge doses of steroids, via a drip for two nights, before sending me home to wait and get better. I think it took me a further two weeks to be fit enough to return to work, somewhere, some never thought I would be ever again, but not me. From that day on, I have had the odd reoccurrence, but they never last any great length of time, usually just minutes. As though the whole thing just went out of sink for a moment, then reset and continued as normal. I have noticed them being more frequent recently, and when my voice has been at it’s worst, yes, I have found myself once more in a muddle, but I think more because of the amount of air required to be forced through my vocal chords to just get a sound, than anything else. But he is right, this isn’t the first time, that my PRMS has stolen my voice.

We also discussed speaking to my doctor about my voice and throat, but both of us made the same decision, to see how my voice sounded on Monday. Guess what, it was almost fine again to hear, although not as strong a usual, outside of myself or Adam, I doubt anyone would notice. Regardless of how it sound, I can without out a doubt say that it just doesn’t feel right, any more than my throat does, even though it’s not sore. I know it isn’t helping with my breathing, as every time I talk when it vanishes, I have to push more air through my vocal chords, and that is wearing. Right now although I can talk, when I do, I can feel it, every word. If I lift my head to look upwards, everything in my neck goes really tight. It is all working together and making things harder than just breathing should ever be. I have of course done the obligatory searches online, and come back with everything from the most likely reason, my PRMS, through to other conditions like Gerd. It doesn’t matter which one it is, nearly all of them have the same outcome, nothing that they can do. I was reluctant to speak to the doctor as I fear that his response will be to send me back to the hospital to see yet another specialist, this time in ENT. That would lead to more test and more hassle. I just don’t see the point of seeing them, to be given yet another diagnosis of something they can’t do anything about. In fact, I actually said to Adam that if or when I do talk to my GP, that I just wished that I could add a proviso, “Please don’t test me for anything that you can’t cure or at the very least, really help with”. I have a long enough list of incurable conditions, and I am completely fed-up with having tests done. I am beginning to feel as though the whole point of my body is for doctors to do tests on. I don’t intend to give my body to them when I die, for that purpose, and I don’t see why I should let them do it while I am alive.

For a long time now I have had that wish running around in my head. I guess we all reach that point eventually, but having lived so much of my life fighting to get them to do tests, to find out what was really wrong with me, it’s still feels alien. When your body is falling apart, you do really get to that point, where you just want them to leave it alone to do it’s falling apart in peace. All they ever seem able to do is to tinker around the edges. What is the point of piling up more and more conditions, that do nothing other than giving a name to this pain or that one. I don’t need more names, what I need are answers. I know you can argue that until they have their required name, they can’t treat it, but that isn’t always the case. Quite often the treatments are the same, as name or not, all they are doing, is treating the symptoms. At the rate my body is degenerating, I often feel that it would be easier all round if they just took me into the hospital for a couple of days and run every possible test they can think of. That way, they would know before I do, what is going to give up the ghost next. I have often thought that there would be a true value in giving people like me an MRI from head to toe, well maybe not toe, but thigh at least. Once they had that full scan, it would surely make future diagnosis easier, just a scan of the area concerned, and there is the answer. Maybe what I am really dreaming about is actually one of those scanners they have in Start Trek, one sweep and that’s it, everything anyone ever needs to know.

So OK, I am being flippant, but I am truly fed up with doctors running tests on me. It does quite honestly feel as though there isn’t any of me left to test, and most of those tests, have changed nothing. Is it really surprising that I don’t want to put myself in the hands of any more doctors? It isn’t that I have given up, far from it, but I do have the growing desire to be just left alone for a while. I’m not stupid, I don’t need anyone to tell me that my body is slowly giving up the ghost. I know without a doctor to tell me, that my growing need for rest and my desire to sleep more is all coming from my COPD, combined with my PRMS. They have formed wonderfully complex circles, that feed of each other, the perfect storm if you like. Between them, my COPD and my PRMS have managed to trigger the beginning of the closing down of my respiratory system. PRMS on its own causes huge amounts of fatigue, but so does not being able to breath. As my fatigue levels rise, I struggle more and more with everything, especially breathing. I can’t win. My voice is just another symptom of all of this, unfortunately, one that feeds perfectly right into that circle and raising my fatigue levels even higher. I don’t need to see an ENT specialist to know any of this or to be told, whatever triggered my vocal demise, can’t be cured. Even if it came down to something outside of either condition, it always comes back to no treatment available.

When things like this happen, we all have one thing in common, we consider the worst case scenario, cancer. Firstly, let me say this, I don’t believe that it is, if I did, I would accept all their tests. It is though one condition that I try not to consider, as I honestly don’t know what I, or my doctors, would do about it. There is always one fact that I know already, no surgeon is going to want to operate on me if there is any other possible outcome. My physical condition and health, don’t make me the best candidate for such a procedure, regardless where it is on my body. No anesthetist is going to be in a hurry to put me under general anesthetic, and no surgeon is going to get anywhere near me, without one. I know that it is the fashion these days to do anything that can be done under local anesthesia only. That might be OK for something like the surgery they did to remove my shredded earlobe a few years ago, but not if they are going to cut me open. There is no way, I would stay on that table if I knew, they were going to do such a thing. I thought about it a lot when I thought that surgery might be the only answer to the problems I have with my intestine. The whole idea just filled me with total dread and more. I think of myself as a reasonably strong person, one who has managed to get through a lot, but no matter how I try, I couldn’t go through such a thing, not even to save my life. I know that I may feel different if I found myself in that position, but there is one thing I know for sure, it would take one hell of a doctor to sweet-talk me into such a thing. The worse my health gets and the weaker I get, I am sure that most doctors would equally want me to avoid such a thing. It is something that anyone in my position, should really think about, no matter how much we like to believe it will not be required, it may well one day. All it takes is a bad fall and you could find yourself lying there with the surgeons knife poised. Which is stronger, our fear of no anesthetic or our determination to demand one, regardless of the risk.

Please read my blog from 2 years ago today – 28/10/2013 – Where did I go?

I know that in the last couple of months I have returned again and again to this subject, but it is one that is growing in it’s importance to me and as I always presume that what I find hard, well will be what others out there…..

Stepping into a new future

Today is going to be a mess and for once, it’s got nothing to do with me. Two weeks ago, as we do ever Wednesday evening we were sorting out our midweek treat of one of those fancy tear and share breads. Adam lit the oven, but within seconds, it turned itself off and refused point-blank to stay alight, our 15-year-old cooker was dead. We had hoped that we would be able to buy one and have it fitted last week, as Adam was off work, so it was just easier that way, but we didn’t know the system, so we didn’t order it until Tuesday, too late for our plans. As you will have guessed, today is the day that our new one arrives and like everything else, buying it was the easy bit. Because it is gas, it can’t be fitted by just anyone, so the system is as follows, the cooker will arrive anytime from now through to 2 pm, followed shortly after, by the gas fitter. He will disconnect the old one and fit the new one, once done, the delivery van will return, to remove the old one. It all sounds so easy, but life has told me a million times, what should be easy, often isn’t. No matter how much I want to believe it will happen the way they say it will, I just don’t believe it. Add onto that, the fact I normally sleep for part of the afternoon, and well, you can see why this is a day, I just want to end, even though it has just begun.

I had actually totally forgot that it was coming today, that in itself isn’t that surprising, nor is I suppose that I had actually planned my week totally differently. I had decided on Sunday just to enjoy my day and take it all slowly. Then yesterday, I was going to get ahead with scheduling my quotes and anything else I could out of Tuesdays routine, plus have my shower, as I was planning to make my Psyllium pancakes today. Then yesterday lunchtime when Adam phoned to say he wasn’t coming home for lunch, he reminded me that the cooker would be here today. At first, I was just plain angry with myself for once again forgetting something major was happening, then I remembered the pancakes and my heart totally sank. From start to finish, they are a 5-hour job, granted nearly 3 hours of that, is just waiting for the yeast to do it job, but it still time. In the past, I would have tied myself up in knots, panicking about how I was going to fit it all in around my routine, without it all falling apart. Once off the phone and in the kitchen, I sat and checked myself, just sitting, breathing slowly and taking the time to sort it all out in my head. Once more, I was calm and relaxed about it all, I had a new plan and I was at peace with it. Even a month ago, that wouldn’t have happened. This new me, the laid back, what will happen will happen me, is odd, but somehow nice.

Of all the things that I know has made the biggest change in how I am feeling about life, was the realisation that I couldn’t control things any longer and I had to find a new way of handling everything. Yesterday proved to me that it works, until then it was mainly theory, I hadn’t had anything happen that was major enough to be sure it would work. But there I was, everything up in the air, and I was calm about it. There were no tension tears, not banging things around in the false belief that speed would make it all happen quicker, I was doing everything the right way. I am not saying that it all passed without any issue. I did at one point find my breathing all over the place and I wasn’t able to sort it out. So there I was sat on my perching stool, cooking pancakes whilst using my nebulizer. Probably not the image that most would expect in a kitchen, but it worked for me. Taking the time to just stop, to think about it and put it all into a logical fashion, and accepting that my day was just going to unfold as it did, rather than how I thought it should, made a world of a difference. I hadn’t been sure it would work as I am fighting against many ingrained habits and also brain damage, I have tried using different theories to control it in the past, but always failed. Usually, my brain can’t cope with things not being just so, not exactly the way it expected. Until now, I have never been able to calm myself, all I could do was go with it, accept that I was going to be distressed and wound up, with no escape until it decided to let me go. It was both scary and exhausting, but there was nothing that had worked before, not even systems almost identical to what I used yesterday. I can only think that it worked because of my acceptance that I can’t control anything and that life, now has to be in the hands of others.

The whole afternoon passed not as I expected, yes busy, but I still had a nap and my shower and the pancakes were done as well. As for what I normally did online, well it just stopped, and I didn’t feel stressed by it. One of the things that I have been thinking about for a long time now, is setting up something that will aid my memory, but is still mainly run by Adam. I have looked at them in the past and done nothing about it, but I know there are out there several free multi-platform calendar/planning apps. What I want, is to set up everything from ordering my prescriptions, to the next day I have to have a shower, all my hospital appointment, you name it, anything I need to be told to do, or be ready for. With it being multi-platform, it will work on my PC, Adams phone and his laptop. That way both of us can see it, add to it, check that things have been done, or not, and it should keep us both in line. I am also going to try and find one, that sends alarms as well. When I had one just on my own PC, it was too easy to ignore, lie to and basically pay no attention to at all, it was a perfect exercise in futility. If we had had one, I wouldn’t have forgotten the cooker was coming today, and Adam would have known about my plans to make my pancakes. More than that, it wouldn’t have been in that day, when I was on the phone arranging the cooker, as I would have put it there as the day, they would run out. Adam is already my memory, the person who sorts out my meds, opens all my mail and keeps me right daily. What he has to do for me, is always rising and I think things are already getting to the point, where he too, is starting to forget about some of it. Running our own life is hard enough, running someone else’s as well, well let’s be honest, it’s a lot to ask.

To my surprise, I was in the middle of the second paragraph when the doorbell rang. It was the gas engineer to uncouple the cooker, I had been told that the cooker would be here first, but apparently not. He was still testing the gas for the whole house, when it rang again, it was the cooker. All of it was happening at once, and not the way I had expected. Once they had delivered it and left with the old one, I disappeared back through here, in desperate need of normality, to be away from all the mess, people and change. Everything was happening too fast on one hand, and perfectly on the other. We’re now an hour on and peace has settled back on my home, and I have a working and perfectly beautiful, new cooker. I have made it through turmoil without landing up as a jibbering wreck. Just all the toing and froing has been enough to leave me tired, but for once, I am pleased with myself at just how well I handled it all without Adam by my side. I’m not totally calm, I’m not totally settled and peace with the world, but I am content with that, that is a minor and irritating thing, but I can handle this and I will settle back into my day. Life is good, that’s all I have to remember, life is good and I am safe, not in control, but safe and that’s what really matters and has to be my goal from now on.

Please read my blog from 2 years ago today – 27/10/2013 – Family breakdown

When the day start with the shock of touching your feet to the floor and burning pains sears through the soles and fires up through your shins, well you have to wonder what the rest of the day will bring. I know all to well that burning in the soles of your feet is a clear sign that you have nerve damage, I have over…..