If there were a cure?

Posted on December 15, 2015 by livinginalimitedword

Peace, it’s such a simple word, yet it has so many meanings, some so personal, they hurt. I can already hear the questions, how can peace be painful, oh, it can, it really can. To someone like me, someone who knows nothing about war, in the traditional meaning of the word, other than second hand, I believe we have to personalise it to get anywhere near being able to understand it. My war, the only one I have ever fought, or been part of, is simply the war to live. I know life shouldn’t be a battleground, but I didn’t choose mine, unlike those who once mounted horses, or climbed into a tank, I couldn’t choose to be a warrior or simply a foot soldier or even a pacifist, as my battleground is me. I don’t believe, that even the strongest warrior ever actually chose to go to war, they simply do the only thing they can, they fight.

My fight started so long ago that I don’t honestly know what triggered it, but I do remember the day. I was in what our school called Kindergarten, year 2, I had reached the grand old age of 6 and I wholeheartedly believed, that the underside of a road roller was preferable to life. The girls of my year were taunting me. I’m not saying that girls are more spiteful than boys, at that point, I didn’t know, as it was an all girls school. They were taunting me, for what, I don’t know, I sat on the wall watching the roller trundling up the hill. The words just came out, “I’m going to kill myself, I’m going to lie down in front of that roller”, they taunted me even more, so I did what all confused children did, I started to cry and I ran inside. Although I remember a teacher following me into the toilets, where I locked myself in a cubical, I don’t remember what followed, outside of my head. Did I want to die, no, I just didn’t want to live, they’re two very different things. I mention this now, only to give you a start point, as to where my personal war began.

From 6 to 28, it is fair to say that my life continued to flip, from either not wanting to live, to actually wanting to die, broken with bright spots of happiness, but never more than spots. That’s why I have always found my health somewhat ironic, as it threw itself full force at me, in the first elongated happiness, I had ever had. I had had two years of bliss from the day I met Adam to the date they told us that my fears were correct, I wasn’t well and I was facing yet another battle, another war, far bigger than I ever imagined my health had brewing inside me. So surely, peace, a complete cure, it must sound like the most wonderful thing possible. To have that chance of rediscovering that bliss, to take back that happiness and have a life worth living, it must be my ultimate dream. To an outsider, I can understand that, but to me, the idea I might one day be cured, no matter what it might ultimately bring, what terrifies me, is all that would lie in between.

When a war ends, to those who have never lived through one, we have this idealised picture of people just picking up their lives as though nothing has happened. That couldn’t be further from the truth if we tried. At the end of a war, there is devastation, not just of buildings, but of lives and families, they all need to heal and be rebuilt. Becoming well again, after so many years of anything but, would be like waking up in the middle of Berlin at the end of world war two, but totally alone, with a city to rebuild, by yourself. Around me right now, there is a support network, I may not choose to use it yet, but I know it is there when the time comes. If I were to wake up tomorrow totally healed, that network would be gone, other than Adam, I would be on my own. How on earth, do you go from where I am now, back into normality? It’s easy to say, well you get dressed and you go and get a job. It’s easy to say, but it would be so difficult, that I wouldn’t know where to start. I haven’t put a single foot outside this house alone, in 8 years. From the little, and it is very little, that I have seen from an ambulance being taken back and forwards to hospital appointments, there has been so much change out there, that I hardly recognise the place I call home. In just a hundred yards from my front door, the shops that were once there are all gone or changed, the gap, that was once at the end of our terrace, has a completely new three story block of flats in it, and the people who lived around us, have all changed. That’s within feet of my front door, what will have happened in the next 100 yards, and the one that follows that? The city I once knew, how much of it is still there? Eight years is a long time in the life of a city, and finding a job, in a city where not one of the networks I once knew and would have used, have all vanished. Outside of my front door is an alien planet.

If you haven’t worked for 8 years, how do you go about getting a job? With no current work history, and in my 50’s, my chance of anything in the role I once knew is zero. I have missed 8 years of advancement of the technology required, I would have less knowledge of how to go about it, than a school leaver, who wouldn’t be considered either. If I were 10 or 20 years younger, then maybe, I could find a way. Retraining would make both mental and financial sense, but with just 10 working years left, who would pay for it? As for getting through an interview, well that’s a nightmare I haven’t even thought of for over 20 years. I doubt I would have the conversational skills, let alone the confidence required to master that one. When you are cocooned in your own world, the one out there, unlike yours, doesn’t stand still and how you reenter it, I quite honestly don’t know. Remember, that at this point, I am financially aided by the state to live, it’s not much, but it keeps the wolf from the door. If I were suddenly well, that would end, the pressure to work would be unbelievable. Without the required confidence alone, my chances would be nil, with the rest of it, it gets even lower.

When you become ill, friends disappear, I haven’t even held a conversation on a one to one basis, with anyone other than Adam and my daughter. Family don’t expect social skills, strangers do. I am used to being able to sit in my own world and do and say whatever I want. Could I honestly hold my own out there? Would I even fully understand what some are even speaking about, as trust me, I struggle when I watch TV to follow at times, nothing to do with my brain, but to do with changing words, fashions, and acceptability. In 8 years, it’s not just the world, but people change. Watch a movie from 10 years ago and tell me in all honesty, that it doesn’t look and sound dated, well that’s the outside world I last saw, that I was a part of, and right now, I’m still there. The second I was well, I would be pitched into the middle of a world I don’t know, understand, or have the first idea, how I could begin to build a new life in. I’m not agoraphobic, but when you put all of the above together, the whole idea of walking down those stairs and to be in the open is more than just daunting. Even more so, the idea that I could be surrounded by people. Even when I have been to the hospital, I don’t think I have been in close quarters to more than a handful. I don’t know if I could cope with a busy city center, or even going as far as the shops at the top of the hill. I was never great in crowds, unless, I was controlling them, as in when I was a DJ. Even now, just sitting here thinking about it, I don’t think I could be happy out there, with so many people around me. I suppose I would get used to it in time, but I wouldn’t have time, I’d have to go today.

When a soldier returns from war, he is supported back into life by his regiment. If he is wounded, he is cared for, rehabilitated and slowly reintroduced to life. If you get well, your war and the damage it has done to you, psychologically, or physically, is ignored, you’re just turfed back into life. What more do you want, we’ve made you well, get on with it. They don’t even bother to pat you on your head, as a parent would a child, they just chuck you into the world, sink or swim right into the middle of another war. My health will never be cured, unless by a miracle. They might find a cure, but the damage is done, my body would be caught in time, well where I am, no more getting worse, but not better either. That’s not true for some, some will be ill for years, but eventually cured, I don’t envy them at all. I expect it’s fair to say, that the longer we have been ill, the longer we are housebound, the harder it will get. But there is one other element that would change everything, the fact that we are used to this life. This is now our own personal comfort zone, they way we live, the way life is, to throw it all up in the air and to have to once again, start all over, well, even with renewed energy levels, I think it would really, really hard. I guess there really is a point, even with health, that the saying “Better the devil you know”, starts to be true.

Please read my blog from 2 years ago today – 15/12/2013 – Little problems, little choice

I seem to still be paying for my exertions although I did actually sleep last night, it was nice not to be woken over and over again just because there was no way of finding comfort. I know my mind was racing, but I think…..

Be you, not me

Posted on September 22, 2015 by livinginalimitedword

I spent part of yesterday afternoon reading a few blogs from other people with COPD and chronic pain. I was surprised by how many of them were putting in so much time reading medical sites and looking for answers to questions I haven’t even bothered asking. I always knew that I had a different way of approaching my health and reading how other people see their health, not just yesterday but in the past as well, has totally confirmed that. When I was first diagnosed I did spend a lot of time reading about what was wrong and how bleak my life might be. For me that was enough, I didn’t need to make myself feel like I was locked in hell, any sooner than I had to. Other than back then, I have only really read them if I had a real reason to do so. The odd new symptom, something I had heard on the news or read on twitter. Other than that, well medical sites and especially site dedicated to any condition that I have, have been there but not seen. Just as I don’t read the leaflets that arrive with my meds, I ignore all those expensive websites as well.

No matter how I try or how much I read of other people blogs, and no matter how well I understand that we are all different, I find it hard to understand why someone would want to spend the little free time we have to enjoy our lives, reading and researching the very condition that is so quickly stealing that life. If I read every site out there that talks about Multiple Sclerosis in all it’s forms, I don’t believe that I would gain a single thing. To me, all I would be doing is wasting the precious time I have left. If you are one of the people who fills their day this way, then please be assured, I am not getting at you in any way what so ever. It’s just that I truly believe that it is my doctor’s job to trawl through all those medical papers filled with figures and shorthand that without their training is generally confusing. Just as it is their job to suggest what medication or treatment might help me, I don’t even want them to sit and tell me how and why it should work either. I am one of those people who just accepts their knowledge and does as I am told. This to me is the logical way to approach my health, yet I am finding more and more who want to know more than their doctors and it kind of baffles me.

I understand the need to know, but I fulfilled that years ago post diagnosis. I guess that it might be what I learned then that left me totally convinced that the best thing I could do with the rest of my life, was to make it as comfortable as I could and to enjoy it. The more blogs I read, the clearer it became that the majority of people writing about their health, are by people searching for a cure. Clearly it will sound odd to the majority reading this, but that is something I have never done. Not once have I sat down and entered a search into Google in the hope of finding a cure for any of the conditions that I have. It has never even entered my mind to do such a thing and it appears that I am the odd one out. I accepted from almost the day that I was told, that I was dying and there was nothing else to be said or be done about it. The one thing I could do was to work out for myself the best way to live. I guess that is why I got more and more angry when reading other people’s blogs, as to me they weren’t telling the truth. What I was reading was sugar coated and full of false hope, what I wanted with the truth and real hope. Where were the people who spoke about their health just as it really was, day to day. Where were the people who were in pain, who couldn’t stay awake, who didn’t know how to deal with their health. Apparently, they were all looking online for a cure and not actually talking about their live’s at all, not telling us how they are making it through and dealing with their symptoms as they affect them, so I started writing.

There are millions of different sorts of people out there. If you were an alien reading the blogs written by the same people, you would rapidly come to the conclusion that once ill, humans become clones. It is the oddest thing, but I can count on my the fingers of my two hands, the number of blogs that I have come across that were taking a new or different approach to their health and what they shared with the rest of us. Logic alone says that should never happen, so why has it? I can only think that it is down to the power of social media. Somewhere out there, there is the first highly successful blog by someone with a chronic illness. It’s not us who become clones, it is all too often though, those blogs. Imitation may be the highest form of flattery, but it is also a dangerous road as it destroys self-discovery and individuality. Don’t read my blog, or anyone else’s and then start to write about your health in the same style, write what is in your heart and in your mind, it will do you and the world of blogging, far more good.

The reality of chronic illness is that the majority of them are disgusting, painful and deadly. To me, you can’t sugar coat that. I actually think that trying to might be the reason that some and I do mean just some, fall into depression. I fear that some are so busy trying to gloss over their reality and to convince themselves that it doesn’t have to be nasty and real, that they don’t even see it coming. I have tried and come up with many theories as to why it is that I cope mentally with all of this so well. Although they have all had a new twist, or a new angle, the core of all of them has been the same, I am realistic about the whole thing from beginning to end. I allow myself to adjust, just as I have been doing in the past week, to all new major events that I can’t sort out or find a way around. Then I move on from that point without looking backwards at what it means I have lost all the time. If I were to spend my time constantly working on finding that one new thing that might just be the cure my doctor’s have missed, I wouldn’t have the time to simply heal. Personally, I believe that by not trying to do anything other than survive, that I am doing so, the best way that I can.

I remember once someone saying to me that the worst thing I could do was to dwell on it, that I should keep myself busy and stay positive. I don’t think there is a worse thing anyone could do, not surprisingly the person who said it was my Mother. We have to dwell on it, it’s like saying don’t worry, stopping breathing isn’t an issue. It’s a huge issue. And as for staying positive, well there is that sugar coating again. I am incredibly positive about my life, not because I try to be, but because when you deal with life as it happens and I don’t try to hide it or anything else, being positive just happens to be a side effect. I know that we all have our own way of dealing with everything and what is right for one, isn’t always right for another, but it feels to me that there is an almost whirlwind of people, probably mainly driven by mothers, out there pushing this fake positive down everyone else’s throats and others are just caught up in it. There are as many different ways to deal with our impending death and our never ending illness, as there are ways to live. I frequently fear that too many people seem to be caught in the same whirlwind. It is OK to have days where the pain is totally destroying you. It is OK to want to kill your Doctor, well as long as you don’t actually do it. It is OK to want to curl up in bed and feel like the world is ending. Just as it is OK if you really, really want to, to put on a plastic positive smile or look for a cure every day. As long as it is you and you’re not doing what everyone else is doing, because you have been brainwashed into believing, that it is what sick people do. I believe that sick people should be allowed to just be sick people and as individual as they were when they were born.

Please read my blog from 2 years ago today – 22/09/2013 – A night with a lesson

I had a really bad night last night, everything just seemed to flare up and attack me without any reason. It wasn’t as though yesterday turned out that different after my early start, the day passed without any note and I slept well in the afternoon for longer than normal, making up what I….

Finding a cure

Posted on August 14, 2015 by livinginalimitedword

There is stress running from my neck to my hands and manifesting in my head. The truth is it’s probably the other way around, but that is how it feels. Adam was using my PC last night as there is some software on it that I can’t load to his laptop, it’s a Mac, and he needed it for some college work. The problem is that he without meaning to has moved the keyboard and changed the setting on my seat. The result is I just can’t get comfortable or get anything back where it should be. Within 20 minutes of sitting down here, I started to feel pain in my neck and shoulder. It was flowing down to my hands and before I knew it, I had a headache. So which is it, my total frustration about not being able to just sit down and my day flowing peacefully from there, without having to keep readjusting everything? Or. Pain being caused by sitting incorrectly and straining muscles triggering pain, which because I can’t relieve it, is now causing a headache? I could go around and around in that circle trying to find the truth, but on this occasion, I think it’s a combination of both. If only it were so simple to work out what is wrong with us, what is causing it and how to cure it.

Throughout my time in writing this blog, I must have discussed hundreds of different theories that are plausible, in some cases implausible sources and cures for MS and other conditions. If you check online through the space of just a single month, you will find new theories and treatments popping up all the time. Unfortunately, the worst culprits are actually the medical profession. Actually I will take that back. Years ago, their theories were only discussed amongst themselves and were printed in medical papers to prompt discussion and bring different groups together working in the same areas. Unless you subscribed to the Lancet, you never knew anything about it. These days, it has become something that the media have picked up on and are more than happy to plaster all over not just the newspapers, but also the news. The more of them that I hear, the angrier I get. Each and every one of them is building false hope for those of us who are ill. The most recent one that most will have heard of was the declaration the MS was caused by a lack of vitamin D and could even cure it. The news was full of it, people all over the world were taking huge doses, some proclaiming miracles, other declaring it didn’t work. It has now officially be declared as having no clear results to prove it has anything to do with either developing MS or playing a role in relapses. I never believed it, because I knew thanks to tests for something else, that my vitamin levels were fine.

The majority that appear on the news are always tagged with warnings that it is still in research phase or that it will be many years before it is available as a treatment. Even with those warnings, I think it is very irresponsible of the media to report in this way. It builds false hope, especially when it comes to fast moving conditions like cancer and Alzheimers. You listen to a three-minute report that all the way through is building and giving you hope, then at the very last second they tell you it won’t be viable until after you are dead. Who is that helping? If anything, all they are doing is reminding you that your case is hopeless and in sending desperate people to their doctors begging to get onto trials, that probably don’t even exist yet. I know personally that years ago when neither Adam or I knew enough about my health to be doing anything but grabbing at straws, that almost a week wouldn’t go by without Adam trying to convince me that there was this new cure or that new cure. I could always hear from the tone of his voice, that he had already emotionally invested in the idea. He saw it as our hope and our answer. Life had already taught me to be more sceptical than that, but he had a few years to live before he too had joined me in that “OK, I will wait and see” position. So far, none has moved any closer.

There is, unfortunately, a fact that most of us who have been ill for many years, even if they did find a cure tomorrow, the chances are that it wouldn’t help us. It isn’t just that anything announced now would take years to develop and get on to the market. But there is a fact that we all try to ignore. Our bodies are damaged beyond repair. I can only use myself as an example, but it will mirror many others out there. 30 years of living with MS, plus who know how many years with all the other conditions who have tagged along for the ride, has left my body in a mess. What my MS has started, has often been taken over by another condition that has continued the work. I am in the category of multimorbidity. It doesn’t sound nice, but it is somewhere that many who have had one chronic condition for years will actually find themselves in. Most of us will land up with three or more chronic conditions, there is no way back. The best I could hope for is that a new so-called cure might halt my PRMS where it is. Stop it getting any worse, but the real damage has been done. Also, unless at the exact same moment in time they also found the answer to all my other illnesses, I will still never be well again.

I fully understand why the media is happy to put these stories out there, they make great headlines. They also make a huge headache for all of us who are actually living with the condition. With every new “discovery”, I have well-meaning people who almost daily tell me about it for the next couple of months. It isn’t just the discoveries of the medical profession that I am over informed about, I constantly receive tweets, emails and messages about this or that new discovery that could cure me and give me this wonderful new life, that they have found online. Most have never been anywhere near the mainstream media, they are coming from the millions of site out there that have been set up to just make money out of the sick. Some are pure cons, just people wanting your money for something that through clever wording have made to sound as though it is perfect sense. What they sell, if you are lucky is nothing more than flavoured water or syrup. If you’re not, it will do you far more harm than just to your wallet. Others proclaim a new wonder food or diet, their personal have discovery, Despite their proclamation that all they want to do is help others, by passing this information on, always has an expensive book you just have to buy to go along with it. Over the years, I have become the biggest sceptic there is. I have actually got to the point that I don’t even read anything any longer if I can see in a quick scan, a price anywhere on the page. Personally, I have never understood how people like that live with themselves.

To someone who is already ill, it really doesn’t matter where an illness comes from, once you have it, the only thing you want to know is how to get rid of it. Hope is vital to life and it keeps us going. It isn’t all focused on a cure, that would be wrong of me to imply. I still hold an amazing amount of hope, but it is hope in life and those that I love. But for someone to give you false hope, is truly damaging to some and highly annoying to others. The internet has opened many things up that unfortunately can’t be closed down again. We can’t stop the media putting out information they shouldn’t really be talking about for another 10 years. They all want to be the ones who broke the story. All we can do is hope they eventually realise that what they really own right now is the damage it has done. We can’t stop the scam merchants from selling hope to those who are running out of the genuine substance. All we can do is to try to educate those who have just been diagnosed and to support those who are so desperate that they will hold onto anything. Those of us too far along the road to find a way back still have much to do when it comes working out how to fix this mad and cruel world that we live in.

Please read my blog of 2 years ago – 14/08/2013 – Is anyone there?

A day that has already almost vanished in front of me, one phone call and suddenly I am miles off my normal routine, yes, Jake called. I have to say that in the last couple of weeks our calls have been far more upbeat and not just long lists of people from the music industry that I no longer remember, it is amazing the……..