It will be a good New Year

The start of year nine, I don’t know what I thought would happen when I became housebound, but I never once thought that I would be sat exactly where I was nine years ago, counting the years. Mind you, do we ever look that far ahead of ourselves in our future reality. I know we all have dreams and plans, but that’s not the same thing, what I’m talking about, is really imagining and putting ourselves “into” our future. I don’t think any of us do, simply because we can’t truly see our future. It doesn’t matter how much detail we amass about our health, none of us can truly imagine ourselves in those final stages, not us, other people but not us. Even when we were diagnosed with whatever horror our doctors found, we didn’t actually look into our future in detail, only in the most general of terms. All of us draw up a worry list, almost immediately those words were spoken. It probably started with the fear of having to stop working, how we’ed pay our bills and would our families stand by us, or vanish as we grew iller. All valid concerns, but none, have a single thing to do with how we would feel, how we would survive mentally, emotionally and even physically, or how we will deal with our health vanishing and not being able to do anything we wanted. We don’t think of future pain, future inabilities and how long we will have to live housebound or bedbound. I for one didn’t think about any of the things, that really matter to me as an individual, not as a partnership, or a member of a family, I mean totally and narrow-mindedly about myself. Every single thought I had, somehow, included Adam. Now that’s not a bad thing, but as this is happening to me, why didn’t I think about me?

It was in the first week of January 2007, that I had to come home from work as I couldn’t manage my wheelchair as my left hand was dead. Not being able to manage my chair, meant I couldn’t manage the office and I was going to have to work from home. I don’t remember it ever entering my head that I wasn’t going to be able to leave here alone ever again. At first, I know that I thought it was just a matter of time, my arm would recover and I would be free again, but by the time it did, other things had progressed, and I was never to leave again. So maybe that’s why I have no memory of looking into what me true future was back then, because, I couldn’t see it, I couldn’t believe, that I was housebound forever. Looking backwards, it’s easy to see why we don’t see the truth, even when it’s staring straight at us. We lie to ourselves, over and over again, painting a glossy picture, as we’re us. What the doctors or those websites say, is about other people, not us. None of that, well maybe the mildest parts might, but the bigger, bader picture, no, not us. Those lies are what keep us sane, able to cope, able to get on and live our lives, even if that life is a lie, it’s better than the truth.

I remember when I was at the hospital for my chemo, and there in the waiting room was this lovely and loving man. He was sat there talking to his wife, who was sat in a wheelchair, not like mine, but one that she was strapped into. Her head hung to one side and her voice was so weak and so slurred that only he could understand her. He sat there wiping away the saliva that escaped the corner of her mouth, ever time she tried to say something. Although he was clearly engrossed in his wife and her needs, he took the time to talk to me. His wife was my possible future, she too was there for chemo, just two months earlier, she had been fine, then she had a flare, the result was there in front of me. I felt like a fraud. My health was bad, and I was creeping forwards far too fast, towards losing my job, but in comparison, I was fine. I still hope that the treatment worked as well for her, as it did for me, as I never saw her again. Even then, at that very second when we were facing each other, I couldn’t imagine I could ever be like that, because, I was me. Conceited, no, just self-defense, I didn’t want to believe, I didn’t want to see or even think, that such a thing could happen. My blinkers were firmly fixed and firmly closed, to my future. This, though, was the year, when I first saw a single sign of that lady, in me, and it hurt, it really hurt. None of us want to believe, the worst can ever happen, or the end is ever getting closer.

It’s been a year where anyone who has read my blog throughout it, will know that my health started to race, started to take me into places, I hadn’t wanted to even think about. The start of year nine, finds me in a totally different place, than the start of year eight. Even this time last year, I couldn’t see or believe that what has happened, would or even could, yet here I am, still me, but a lesser me, a somewhat diminished person compared to just twelve months ago. The new year is all about looking back and looking forwards. It’s taken me almost every year of my age, to realise, we are actually only capable of doing one of those things. None of us can even glimpse our future, without having touched it. When we look forwards, what we see is totally determined by just three things, our belief in ourselves, our attitude and hope, the strongest of the three, has to be hope. The belief in ourselves will take us a long way, if we’re determined, even our health can’t take everything we dream of away. Our attitude, well that takes us that bit further, as used correctly, it sees our dreams as never defeated, just needing that bit more work, but we’ll get there. Hope, well hope is going to make this a wonderful year, as it’s hope, that fills in the adds the gloss and the glamour, that makes life far more than just worth living.

My ninth year of being housebound is going to be another good year. I know that, I can’t see it, or predict it, I just know it. Just as I knew every previous year would be and was. Life is good, if you can smile and laugh, if, you can feel the love, of those you love, if, you can feel the care, of those you care for. Whatever our health does to us, well if we have all that, we can survive it, more than survive it, we can get on and live our lives, in hope and happiness.


Please read my blog from 2 years ago today – 01/01/2014 – Happy New Year

2014, well it’s only begun so I have incredibly little to say about it, yet, give me a couple of days and I am sure that that will change, but of course  I hope all of you have a Great New Year. I didn’t make it…..







Surely doctors should show some humanity

I know that many of you were expecting yesterday that I would give an update as to what happened at the hospital, sorry if I disappointed you. Yesterday’s post sort of took over, even though it was started before I went to the hospital, and completed on my return, the break didn’t interrupt the words. It’s hard to fight against something that is so determined to leave my brain. Anyway, to be honest, there isn’t really anything to report. I was back there basically to report back on the success or failure of the nebulizer and steroid inhaler. I am so bad with names, as I am sure the doctor did introduce himself, but I failed as I so often do, to take it in. I have seen him before, it’s a couple of years ago now, but our paths have crossed. My memory of our first meeting had him fixed in my head as one of those doctors who treats you as an idiot, and gets angry when you fight back. Our second meeting, yesterday, was totally different. He was pleasant, rather smiley and even friendly. We discussed the improvements that I had found and my concerns about my oxygen saturation levels. He was more than happy to go over them all and has put my mind at rest over the dramatic and sudden drops that I had come across. He said it is quite normal for such things to happen. Apparently they aren’t totally sure what causes them, it could be something just as simple as a blockage, which when you cough clears, or as my theory put together, a spasm inside my lung. Basically, as long as they come up again, there is nothing to worry about, but should it stick at a low level, then action should be taken.

When I was last there, I had seen on screen that my oxygen levels were settled at 93%, which had matched with the levels I had found on my monitor at home. I hadn’t realised that throughout the time that I was trying to blow into their machine, failing all the time to give them the consistency required, that that machine was also measuring them. That one had actually read the 91% that I discovered at home last week. So the dip I was seeing wasn’t a dip at all. When he told me that, he started going on about machines I might have seen online that would force oxygen into me when I was asleep. I told him I hadn’t, but I had seen them on TV. It was one of those moments that I love when I don’t give doctors the answer they assumed I would. I got the impression, that he thought that I was pushing to have oxygen at home, I wasn’t. Almost everything that he said from that point on was followed with the words, “but as a smoker, you can’t have oxygen at home.” He was watching me closely for some other response than the one he got. I told him quite blankly, “I know that”. He kept on saying it until I told him “stopping smoking isn’t going to help me, I could give up today and my PRMS could stop me breathing tomorrow.” He had to agree with me, as that is the blank truth, but he did try a couple more times. Considering that Dr. Anderson, my consultant, didn’t mention it even once, his persistence, was rather annoying. I believe that Dr Anderson, along with every other Dr I have seen in the past 10 years, understands my position and respects my views on it, for some reason this guy doesn’t. Just as he did last time, he suggested that I saw my Neuro, so once more I went through the futility of doing so, once more he had to agree, but seemed pleased that even though I wasn’t seeing him, I am seeing the MS nurse.

I hadn’t received the answer to my question about the safe levels of oxygen saturation, but it was Adam who asked it again before I had the chance. Apparently, the level to start being concerned about is 88%, but only if it is consistently at that level. He said that confusion is probably the best measure, if I am totally lost and not making sense, then going to the hospital for a short stay where oxygen can be given, is a good idea. He then, of course, had to add in, that during my stay the would keep me away from the cigs, and that I wouldn’t be able to continue on the oxygen at home if I wasn’t off them. I had to keep my cool at that point, as clearly he had a script he worked off daily, it was just my turn to hear it. The one thing he went on to explain partly for me, but I think more for Adam, was that many people can actually continue to live even when their oxygen levels are as low as 70%-75%. As our bodies weaken, we actually become more efficient at picking up on every scrap of oxygen in the places it is most needed. Healthy people; are actually really bad at it; and in effect, actually waste most of the oxygen their lungs take in, but as our lungs weaken and time passes, we learn to be far more smart about not wasting it. The result is that low levels may distress those around us, but our bodies a perfectly happy.

I don’t know why, but I thought that once they were happy that things had settled a little, that that would be it. I sort of had it in my head, that yesterday would be the last time I saw them until I felt that things were changing again, I was wrong. He actually asked me, how long I was happy going it alone, before returning. I wasn’t sure at all as to what I should say, so I simply said, six months maybe a year. He gave a sort of rye smile and said, “let’s make it four months”. I hate it when doctors do things like that, give you the impression that things are going well, then throw you a curve ball, and shattering it. For him to want me back in four months, sort of says he is expecting things to get worse and for me to need their input that quickly. In some ways, I don’t know if there isn’t much of a point, in returning to see them at all. From what he said, that unless I start having, infection, after infection, when they would start me on a long term antibiotic, there isn’t anything they can do for me. The only medical intervention available is oxygen. Something, that I will never get at home as long as I continue to smoke, and as I have no intention of stopping, I won’t get it. He has also put me off going into the hospital for help, even, if I am having really bad problems. Why would I want to go there and be badgered all the time about my smoking? He even gave me the impression that they would be forceful about stopping me while I was there. All he has done is to make me now feel that I am on my own with this one. Despite the fact that they confirm every time that my lungs aren’t in that bad a condition and that it is my PRMS, that is causing my problems, that they are still going to treat me as though my cigarettes are the biggest issue, when they’re not, my PRMS is.

I understand that cigarettes are bad for me. I am not a total idiot. What I don’t understand is, if it is a clear fact, that the damage they have done to me is limited, and it is more than likely, that my PRMS is going to be what kills me, why should I stop smoking? I understand why a doctor would spend their time trying to convince someone, who has a possibility of a good normal life, to stop, that makes sense. How is it a good use of their time, to try and get someone who is chronically ill, dying in front of their eyes, with a highly limited life expectancy, a life that they will spend in pain, to stop? To me, that is not a good use of resources and probably even cruel. Smoking is one of the small enjoyments, that I have spread throughout my day. There are times when I believe that you have to look at the bigger picture. When someone is housebound, living all the time in pain, has limited contact with normal life, and has no possibility what so ever of recovering, to try and take something that they enjoy and doesn’t have the time left to do any greater damage, just doesn’t make any sense. To me, it is as mad as telling someone who has advanced incurable lung cancer, that they can’t enjoy a single glass of wine each day, as it might damage their liver. Clearly, every doctor has to do their job. Doctors who specialise in the care of lungs know that cigarettes, right now, are the biggest danger that lungs face for most people. Being blinkered and persistent in their goal, might be part of being a good doctor, but it also makes you a poor human. There is a point when you have to put your chosen career to one side and let your humanity in.

Right to the end of our consultation, he was still trying, and even started talking as though for some nutty reason, that I was going to come home and actually try to stop. He actually turned around to Adam and said that every cigarette in the house would have to be removed, that anyone, who might bring me any, should be told, that they weren’t allowed to, under any circumstances. I shut him down by saying, “I would just call a taxi and ask them to bring them to me”. He looked dumbfounded, shook his head and said, “I never thought of that one”, then turned to Adam and said “This one will need watching, she’s a sneaky one”. No, she’s not, she’s just a truthful one, she’s not going to give up smoking, no matter what anyone thinks.

Please read my blog from 2 years ago today – 10/11/2013 – The pain fantasy

It happened again last night, I was sat there enjoying the TV and my nightly gin and tonic, then suddenly the pain grabbed my side just as it did the night before and just like then it lasted only a few minutes….

A radical thought

I know for a fact that what I am going to write today is going to really shock some people, especially as I spent over 20 years fighting to get mine. Within 6 months of getting it, the most irrelevant thing, anyone every gave you, is your diagnosis. OK, now put your jaw back where it should be and let me explain. I like everyone who knows there is something really wrong, I continually kept going back and back to see my Doctor. I was in some ways lucky, as I moved around the country a lot and every time I moved, the NHS always lost my notes. Now I know that doesn’t sound like luck, but it was, as it meant I could start all over again, in a new hospital, with new and different consultants, without them just looking at past tests and dismissing me. 20 years of knowing you are ill, not to mention living in pain and with all the other things, is a long time and a lot of tests. I was just coming to what I thought, was my final run at finding the truth, when they diagnosed me with Fibromyalgia. I still wasn’t convinced, as no matter how they tried, it didn’t explain the type of dizziness I was experiencing. Then one consultant decided to go one step further than any had before, he too know there was something more major going on, and it was being missed. I had my MRI and there was my diagnosis, MS, a few more tests, and my full diagnosis was suddenly clear, PRMS. So why is it only of value for six months, well it’s simple really, all your doctors now knows and after you have told your boss and the government, and of course, family and friends, it really doesn’t matter what your condition is after that, outside of your medical treatment. It is totally irrelevant to the rest of your life, what matters to all of us, are our symptoms, and how to treat and live with them. I had blindly fought for diagnosis, in the belief that it was going to be a magic wand, a life-changing event, and it wasn’t, life just went on as it always had.

I suspect that I did what everyone does once you know what is wrong with you. I put on a set of blinkers, and saw, and learned only about the conditions that I have, after all, surely they were all that mattered now. I searched site after site that I found online, I read blog after blog, but I kept coming up against problems they didn’t cover. Then one day, about 4 or 5 years later, I had a brainwave, instead of putting the words “Multiple Sclerosis” in every search, just search the symptoms, like I used to. In the gap in time since I last searched that way, the internet had expanded by millions of miles and to my shock I was finding the answers I wanted, not listed under my conditions, they were under other ones. The more I searched, the more I found it happening. There were people out there not living with PRMS, or even just MS or Fibro or any of my other conditions, who were experiencing exactly what I was and occasionally, I even found an answer or two that helped. It didn’t matter that the solution was found by someone with Parkinsons or Lupus, their answers worked for me, because they too, were living with the same symptoms. Then I started to hit my head of a brick wall again, I made the mistake of talking to some of them, and in several cases came up against an attituded that I didn’t understand. If I dared to offer an opinion or a piece of advice that had worked for me, some slapped me down as how could I know, I didn’t have what they had. That to me was total madness.

Those of you who have found me through twitter that about half of the tweets I put out about my blog don’t my condition anywhere. That is my reason why I do that. I prefer to just say “Chronic illness” because that way, I am reaching more people, people who don’t really need to know what my diagnosis was, as we all shared more in common than many of them realise. I don’t have the numbers to prove it either way, but I am almost certain that the majority of the people who read my blog don’t have MS, Fibro, COPD or any of my others, and outside me, don’t know anyone who does. I have worked hard on writing what I believe is an all-encompassing style, that talks about the realities of illness rather than just a condition. Clearly, yes there are posts that have to be condition linked as that is how I experience them, but it doesn’t mean that is their only purpose. The longer I write and the more I try to break down this condition centered approach to health, the more I can’t help but think it is the way to go, especially when it come to supporting all of us with chronic conditions. Trust me, if someone can tell me how to reduce my pain levels, well I don’t care what is wrong with them, I would just be grateful for their advice.

It has struck me that there is a huge resource out there that is being missed, simply because thanks to the medical profession, and their understandable way of thinking, condition has become king. It has led to people all around the world into raising money for the care of people with specific conditions, loads of money. Please note, I said care, not research, that is totally different. That money has been spent building centers where they can go for none medical treatment, to join support groups and so on. Some of these buildings are, on the whole, pitifully underused, only open for a part of the week and locked up unused the rest of the time. Nowhere is ever going to have enough people with an individual condition, to fully keep these places going 7 days a week. In that self-same city or area, I will guarantee you that there are right now people trying to raise more funds for similar centers, but for different conditions. There will also be even more people with other conditions, that no one is ever going to build a center for, as there simply aren’t enough cases of their condition, for it to enter anyone’s mind to do such a thing. I am sure that you will have already worked out where I am going. Isn’t it about time, that the blinkers came down, that the obsession with condition name, was put to bed and people got together, to help people, not conditions. Not once online, have I come across such a place, a center for the chronically ill, that welcomes all, who just need support and friendship.

The center Adam and I went to when I was first diagnosed, was just like that. Totally MS only, open three days a week, offered a huge range of none medical therapies, which had to be paid for, but were lower than anywhere else and always trying to raise the money to cover just their basic costs. These days, the overheads for any charity are high. Look anywhere in the world, you will find small groups all trying to raise funds so they can offer support, or in some cases aid for equipment that might be needed. Isn’t it about time that all the names were dropped and that they worked together to help all who need help, not just for set conditions? Wouldn’t it make sense for them to get together and to share their resources? It has been happening right through my lifetime and longer, that there have been centers for the elderly, why aren’t there the same for the chronically ill? It wouldn’t be for me, as I’m not that sort of person, but I can see a clear need for somewhere where those who haven’t retired due to age, but health, can get together, socialise and support each other. You don’t need a degree in medicine or social work, to be able to see that chronic illness causes depression and isolation, such places could really help. Small groups can’t survive any longer, swallow the pill, drop the name, and spread their wings wider and there’s a chance that they could together.

It just seems so wrong that that diagnosis that felt like a huge relief, the answer to all our problems, rarely is, and not just medically. What good is a name, if that very name, keeps you locked outside from the help that you need? Too many forget that their diagnosis is really only for their doctors, as without it, well they wouldn’t know how to treat us. Oddly, if you look closely, even our drugs are interchangeable a lot of the time. What makes our lives hard, are our symptoms. Look at any list you like and you will find that we share so many of them. If we share the symptoms, we also share the problems they cause. Not to forget all the problems that appear, just because we are ill. Yes, an MS center may sound like a great place, personally, I’d rather see a chronic illness center. It doesn’t matter how you landed up in a wheelchair, it’s the fact that you’re there that matters. It doesn’t matter how we lose our memories, or what causes the pain that keeps us awake. It doesn’t matter what that diagnosis said, or if we actually even have one. People in pain, be it mental, physical or both, need help, help that our doctors can’t give, help that comes from those who just like us, are living with it. The truth is, it is our doctors who need a diagnosis, our governments who need to tick boxes, and society that demands we live in the correct box, not us. All we have ever really wanted is to just feel better, to be understood, and to be able to live, as well as we possibly can.

Please read my blog from 2 years ago today – 02/11/2013 – Opinions

I know that last night I upset Adam when I went to bed, he was doing something in the kitchen and I went through to tell him that I had had enough for another day. He started to follow me, so he could tuck me…..

Week five: It’s not over

If there is one truth that can’t be escaped, it is the fact that there are as many right ways to live, as there are people on this planet. We all like to think that we have got it right, that we are the ones who can show other the way to be happy, but the truth is, none of us can. When it comes down to it, we are the only people who have both the right, and the understanding required, to know what is right for us. So why is it, that every day millions scour magazines, websites and TV channels, for that ultimate piece of wisdom, that one must have item, or that perfect person, who will make our lives better, if not forever, at least for today? If we were content in our lives, we wouldn’t keep searching in the hope that there is something out there, that we just have to find, and our lives will be perfect. It’s a fact that one group of people have made a living out of for the last century, the marketing men, they know our self-doubt and they play on it constantly. The more that they exploit that discontent, the more they make it grow, creating the perfect circle that keeps them in work. They, though, are the last people that we should listen to because if we are discontent with our lives, it is only us that can fix it and that takes a huge amount of trust.

When I was first diagnosed with PRMS, I went through all that normal things that I believe is all part of accepting what is happening to us. It is without a doubt, one of the hardest thing to go through. Our entire lives have just had the rug pulled out from under us, and rather than landing on the floor, we are like “Alice in Wonderland”, falling and falling and falling, with no idea when or where the bottom of that hole is. We grab at all those roots sticking out of the sides, at all the objects that we pass, the occasional one, appears to slow us for a while. All too often, they fail and we go on free falling and searching. Eventually, as time passes, we learn enough to slow our speed down to more of a float than a fall, but floating in space, isn’t an answer to the millions of questions no one has the answers to. I believe it is at that point that our future is really written, we either accept totally blindly, that there are no answers, that this is our life and we had better get on with it and live, or we fall apart. Blind trust isn’t something we as humans are trained to do, in fact, we are brought up to do the total opposite. We’re taught that everything has to have an answer, that all illness has a cure and that doctors are gods. That if we just demand enough, complain loudly enough, research and demand again, we will get better. They lied to us. But if you can accept that, and then take that leap of faith, to put your trust in nothing, and no one greater than yourself, well, you’re still not going to get better, but you can have a good life and you can stop both floating around and better still, falling.

It goes back to my opening lines, ” there are as many right ways to live, as there are people on this planet” and that isn’t changed by health. Actually, I think our chronic health, makes it even more true. Like it or not, society sees us as a subsection, not quite like them, but regardless of that, we should still fit into the plug hole created for us. You can hit yourself over the head with a mallet forever, once you have a chronic illness, you will never fit, ever, again. Society, quite wrongly, puts health quite far down on the list of important things required to be seen as a successful human. We judge ourselves by our looks, our brains, our personalities, our earning abilities, our social acceptance, social standing and our likeability, not all in that order, but all more important than health. Wrong, because without health, all of those fall apart. As we were falling all those things bit by bit were being blown away be the updraft, we may not have seen it at first, but eventually, we can’t help but have to. Keep falling and you fall into another endless pit, the one of depression, make that leap of faith and decide to trust yourself, to build your own life, your own standards, and your own understanding of self, and you stand a chance of living well, despite it all.

For me, one of the things I had to get through to my pig-headed self was that there was nothing, I can control nothing and there were no battles that I can win. I didn’t possess the power to change anything, it was all going to happen just the way it wanted, regardless of what I did. Friends left, work left, money left, health left, mobility left, looks faded, weight went on and the outside door, closed forever. I couldn’t change a single thing, or control even a single hair on my own head. The only thing I could do was live and that had to be my starting point. Not much to build from you might think, but it was the only thing I had, that hadn’t left, that I had true control over. We all have that ultimate power, to decide if we live or die, it’s the only thing, that once you have had what feels like everything stripped away from you, that is left and is ultimately the only thing we ever have true control over. It took me three years of being housebound, to realise that I had to stop looking outwards for the answers and I had to start looking inwards. If we are going to be happy, if we are going to have a life that means something to us first and other secondly, then inside is where we all have to look. It’s not always pleasant and it’s often almost impossible when your fighting with a body that does what it wants whenever it feels like it, but inside us, is where we find the true us, our true desires, needs, wants and goals.

Recently, I had forgotten all of that, I had let myself be beguiled by all those baubles of life that none of us really need, the things other think we want. I had let myself question what was happening to me and where the answers were to making it all go away. It couldn’t be made to go away 14 years ago when it was diagnosed, it isn’t going to be made to go away now. I can’t get back those who are gone, or the things that I lost. After 5 years of stability, I was falling again and life was out of control. I can see clearly now what through everything out of kilter, why I wanted so badly to make things change and it was all my own fault. I stupidly thought that accepting the loss of being able to walk was as simple as sitting down on my wheelchair. I didn’t think that I had to do anything else other than that, after all, I had done it before. Because I didn’t take the time to go through all those steps of loss, and just leapfrog over them all, what I did was open a huge gash and blood was flowing out in all directions. My attempts to patch it were feeble and ineffectual, I was in denial of the fact I was grieving. When you grieve, you don’t just grieve for what you have just lost, you also open all the grief you have ever felt, in the past.

Every step that our health takes, even when like this one, we know it is written there in our future just waiting for us, still hurts. I thought I had learnt that lesson, that I was passed all that stupid stiff upper lip rubbish. It has its place in front of other, but to ourselves, never. I need to look inside, to myself and to live my life, not the lives of others. I have to accept again and to rebuild around what has happened. Just being able to make my way around the house without bumping into things, is learnt skill, it’s not acceptance. Enjoying being able to do things for me again is a bauble, not acceptance. Finding pleasure in just sitting quietly enjoying a meal I made and a break from sitting here at my PC, is emotion, not acceptance. There is no comparison, nothing that can even bring them into the same sentence. My legs are never going to carry me more than a few steps ever again, fact. Easy to say, even easier to type, hard, really hard to accept. But I have to and I have to do it fully, without brushing any of it under the carpet and hope that it will somehow stay there.

Please read my blog from 2 years ago today – 14/10/2013 – The truth of what life requires

Another week of who knows what? I know that logic says that if you are housebound and ill that everyday should really be like all the rest, but it never really is. I thought when I was no longer working that I would find it impossible to…..

Finding peace with pain

There was something I wrote the other day that twigged something in the back of me head. Oddly, well not really that odd for my brain, I don’t remember what it was or when I wrote it, I just know that I did. The back of my mind is often the safest place for information to lurk, as there it isn’t being interrupted or written over by the activity of daily life. I have often found that this happens, it is almost as though I write something and a light goes on, then it grabs the subject with a smile and the knowledge that it will be the subject for me to write about in the near future. I guess the oddest thing is, I am not aware of doing it at the time, but I always know it’s been logged and I always know that I will use it within a couple of weeks. I nearly did the other day then I found myself locked into something else and it dropped back into the pending file, occasionally being added to and padded out just a little. The subject of my lurking friend this time was pain and how I see and feel about it now. I had written something about the grade of pain I was in and how these days that level was what I saw and accepted as “normal”. Pain, any pain, isn’t normal nor is it something that any of us actually truly needs to be in, so how does someone thinking change to the point where living on Morphine and still in pain and somehow find that to be “normal”?

Clearly there is a large factor of getting used to things, but even that doesn’t feel right and in many respects, that in itself is wrong. No one should be allowed to get to that point where it’s just part of our lives and to believe that’s the way it is. It actually makes me a little angry not just with the medical profession, but with myself. By the time they actually got around to finding the correct diagnosis, I knew that normal painkillers just didn’t work for me at all. I was beyond the point where an aspirin was going to make me feel better. Twenty years of living with pain had taught me already that relaxation was the only thing in my armoury that helped. It didn’t get rid of it, but it made it easier to bear and allowed me to handle it and life. So when I received my diagnosis, instead of doing what I should have, demand that they did something about the pain I was in, I continued to deal with it myself. Yes, they gave me drugs that they hoped would modify my condition and over the first 3 years we worked through the spectrum available. They did nothing, something I was later told was pretty much expected as it is one of the problems with PRMS, it doesn’t react like any other form of MS to meds. All they could do was to treat me for my symptoms and that was the first time that my pain was actually tackled. We worked our way through a range of painkillers, but whatever they gave me, the effects were limited. Even now, when I am living on a high background level of Morphine, I frequently have to take another high dose to deal with the breakthrough. The pain I live with still isn’t truly under control. So there is the history, but those are the facts, not the answer to my question. “How did I get to seeing this as normal?”

The answer to that is actually quite complex, but I actually think there will be a large number of people who will relate to it. When you are fighting everyone and I do mean everyone, friends, families and doctors, to get them to believe and not dismiss the fact you know you are ill, your whole way of looking at life changes. Without meaning to, you set up several different mindsets that you switch between. The first is that they are right, there is nothing wrong with you and it is all in your head. If it’s in your head, well you just have to fight it, to change that perception and to get on with life. Surprise, surprise, that doesn’t work. The second, forms because you don’t want to piss off those around you. When they don’t believe you are ill, constantly showing or saying there is something wrong, get’s reactions of annoyance, disbelief and even direct anger. You learn to hide everything. You put on a performance that keeps their anger at bay, which in itself makes your life not only easier but less painful. The third, well I’ve mentioned this one before. You convince yourself that if there is nothing wrong with you, then the rest of the world must be feeling exactly as you do. Everyone must live with the exact same level of pain as you do, therefore you are just a total wimp and you have to toughen up and get on with it. The fourth is probably the most obvious, that you have to be totally mad and the only thing that you can do is shut up before you find yourself locked up somewhere. The final one is the one that got my diagnosis on it’s umpteenth attempt. I am ill and I have had enough of been called a liar, they are going to listen to me. I am sure there are probably others, but these are the strongest ones that I am aware of and they are the three that I switched around within for years.

All of them, except the final, have one thing in common, you are putting on an act, an act that you have been involved in for so long, that showing reality is almost impossible. Even now, I hide, I can’t help it. Even when I am on my own, I will feel a shot of pain that would have many screeching and doubling up. I remain almost silent and hardly moving at all. I have become conditioned to my illness and what is often seen as my being strong, is actually just me hiding again. I am so locked into it that I am sure that I have made my life harder as even doctors don’t always believe me when I tell them how bad it is. I know that happens, it has happened a lot despite my diagnosis. Being stoic is a double-edged sword, usually with both edges facing straight at you all of the time. Unusually though, there are times when being stoic actually does help with the pain. It is such a phycological game that I am playing that the game itself gives me strength, and that strength, allows me to be still and silent, to breath through the pain, rather than go to war with it.

20 years of playing games, of pretending and acting my way through a world that at the time not even I believed was real, has put me into an odd position. I have learned to bear pain, pain that has and is without a doubt getting worse in line with the progress of my PRMS. It appears that my bodies reaction to my munching myelin monster is to cause pain for every new munch. To be able to see pain as “normal” is actually an advantage to me, if I didn’t, I would be screaming and crying all the time. I believe, that I have to be able to call it “normal”, otherwise madness would be my next stop. For some reason, we seem to be programmed with a need for normality. I think we need to be mentally comfortable with our lives, otherwise we are living an abnormal life and where is the comfort in that. I guess that is why “normal” is a personal thing, but I would go further and say that “normal” is a desirable thing and without it, we are living in turmoil. I have become calm, accepting and totally at home with my pain. That doesn’t mean that I like it in any way, it just means that I am at peace with the life that I live and it shows. It has also played out to be an unexpected ace card. I am now in the position that when I tell my GP that my pain is beyond what I can deal with and that I want my background level of Morphine raised, he doesn’t argue, as he knows that it is really needed if I am actually asking.

I have heard it said that you can get used to anything. I suppose that my life is sort of the proof of that statement, but I think it is a statement that only touches the surface. We all have a mixed relationship with our health, but it’s our health and when you can’t cure it or change it, you have only one other choice left, to accept and embrace it. I guess that is one thing that isn’t a game or an act, it’s my reality.

Please read my blog from 2 years ago – 04/09/2013 – New life

Almost every time I think this is it, I have done everything needed and I can just go back to enjoying my PC, it points out something else that still needs to be rebuilt. The new drive was installed with ease as where window 7 and the Alienware Software, all of that was done yesterday afternoon and I spent right through until 9pm updating both……