An unheard voice

I’ve lost my voice. I actually had lost it yesterday morning, but I didn’t realise that it was anything more than a morning glitch. Well I don’t sit talking to myself, do I. It wasn’t until Adam phoned me at lunchtime, he usually comes home but it was raining heavily and there is no point him coming home, just to get wet. It was within my saying “Hello” that I realised just how bad it was, and that I was producing this rather silly sounding nasal squeak, except it’s not nasal. I have been having so many problems recently, that this is just the crowning glory of a voice that is being heard less and less. I thought it was bad enough that I had been reduced to a stuttering, slurring idiot, who couldn’t even complete 1 in 3 sentences, because I had forgotten the next word, or worse, what I was even talking about. Or that I felt like I was dribbling from the corner of my mouth all of the time. I knew perfectly well that the right side of my mouth wasn’t moving correctly, without even looking. Or that I am frequently landing up in a total muddle between breathing, speaking and swallowing. Or the strange sensation of a bubble blocking my throat off, stopping me from swallowing saliva, without the aid of a large mouthful of liquid. Or the annoying sensation, of bubbles being trapped just at the top of my throat, when nothing was there, so there wasn’t much left to go was there. Only my voice.

Adam and I both noticed it mildly on Sunday evening, but on Monday morning it wasn’t any worse. Like most people, we don’t have long conversations in the morning, more the odd comment as Adam charges around getting ready for work. But what I heard, didn’t seem that bad, so I brushed it aside and just got on with my day. Lunchtime had shown it up, but when Adam came home and I shouted “hello”, I realised that there was no shout. Adam came through to see if I was OK, which, of course, I was, just rather quiet and squeaky. Quiet, is bad enough when all you want to do is talk, but squeaky? I’m not a squeaky person. My throat and everything else is fine. I don’t have an earache, or a cold or even a tickly throat, nothing else that might take my voice away, just my PRMS. I know losing your voice isn’t a normal symptom, although it can happen, but with it being so active around that area already, attacking my vocal cords isn’t too far a stretch of the imagination or distance. I only remember managing a couple of words all last night in anything anywhere near to my own voice, that was seconds after I used my Nebulizer, but it was only a couple, it returned to its squeak seconds later.

I made a point of trying to find a reason to talk this morning, as I wanted to hear if there had been any improvement. To be honest, I did at first think it was slightly better, but that I believe was just wishful thinking. Like those mornings that you convince yourself that you don’t have a hangover, until you actually lift your head off the pillow and the room moves. If I trusted my first feelings of the day, I would have declared a complete cure for every condition that I have. All I can do, is get on with my day and wait to see how things are at lunchtime, weather dependant we will be either speaking on the phone or Adam will be home for lunch, either way, today’s truth will out.

As time goes on, I can’t help wondering if there will be any part of me that hasn’t been directly, or indirectly affected by my PRMS by the time I die. I may scoff about the side effects of medications and the way some people feel every single one, whereas I have felt none, but I do know without a doubt that they do have undesirable effects on our bodies. You can’t fill yourself full of chemicals every day without some sort of adverse effects building up over time. Years ago, I noted that my nails and hair weren’t as strong as they once were, so I can guess that that means my bones aren’t either. Mind you, now that I am on a medical dose of calcium, they might improve over time. I had osteoarthritis before the PRMS was found, so I hadn’t much hope of an old age without problems. Oddly though, just thinking about that, I almost bet if they x-rayed my hips now and compared it with my last one from 15 years ago, I think the results might surprise them and me. I have spent nearly the entire last 12 yrs of my life sitting, not walking the mile after mile that I used to, and absolutely no dancing. My PRMS may have inadvertently slowed that one down. Other than my bones, I am sure that there will be some unseen damage, as it is only logical. It is also something that you simply have to accept if you want your doctors to supply you with a good standard of life.

All chronic illness is incurable, quality of life is what all those drugs are about, and I for one will swallow anything if it is going to make my life better. I have found it one of those odd things, that so many won’t even try this or that, because of anecdotal evidence or a list of side-effects that might never even happen to them. To me, if your health is causing you such issues that life is not as good as it could be, you try anything. Fair enough, if it doesn’t work for you, then ditch it and try something else, but we have to at least try. Equally odd to me is the huge number of drugs that prescribed to improve not cure, but when someone says, your drugs don’t work, life is now too difficult and you are no longer helping me, that they aren’t allowed to have a dignified end, in the way they want. I don’t understand how any country can call itself caring, when for some, the greatest act of caring would be to be helped to end their lives, in a dignified way. How is it that they show more care for a cat or a dog than they do for a human? It has been a life long belief of mine that we should all have not just the right, but the means to live and die in a way that we chose, at a time that we chose. I think the stats from Holland and their experience with PAD are amazing, as it is exactly as I would have expected. The majority of people who are given by their physicians the means to end their life, never use it. What they wanted was the option, the security of knowing if they couldn’t cope with dying, they could then take action. It was the peace of mind, nothing more. It makes pure logic, dying has to be the scariest thing in life that we can’t avoid, as no matter what they say, no one can tell us for sure what it’s like.

I know that I am still a long way from that point, but hearing on the news this morning that now California has become the sixth state to legalise PAD, brought this subject back to my mind. The right to die has for all my life been a subject that won’t die and it never will, until it is passed into law, and we eventually actually prove we are as civilised as we think we are. Right now in the UK, like many countries, I can take my own life, but if anyone assist, they can be accused of murder. Therefore, if I chose this route, I have to do it while I am still fit enough to do so, not wait until too ill to take whatever it is, by myself and being forced into dying before I should. How is that right? Every time, which it has done frequently, it once again it is put in front of our lawgivers to vote on, I sit hopefully waiting. I am still waiting. I quite honestly believe it is just a matter of time, but I fear it won’t be in time for me. Just as I have a right to take or not take, the medications that I already have, I should be able to take or not take the ones I want to be prescribed for my peace of mind, as much part of my well being as any other and essential for anyone’s quality of life. But our lawgivers, don’t actually listen to voices like mine, weak or not.

Please read my blog from 2 years ago today – 06/10/2015 – Help?

I remember a time when I looked forward to the weekend, the freedom from work, although I often did several hours here at home, but free from the emails, the calls and demands. Weekends had a special feel…..

UK Roulette

I warn you know that some of you will disagree with what I am writing today, but this has to be here like all the rest of it as it is a true factor of my life and what MS has made me and others have to think about.

Years ago when I was first diagnosed with MS and I was facing an unknown future with a progressive illness, Adam and I had what I can only describe as one of our rare arguments. We were right at the beginning, with little idea of how quickly or slowly this illness would take, or what it would do, but I felt a need to sit down and discuss something that I had actually put a lot of thought into a long time before and my opinion hadn’t changed. I think we all think about the end of our lives as we edge closer and see more of the elderly world around us. Like many I had visited old peoples homes and seen people sat there with no sign of life there other than they were sat in a chair, and like many I had seen a future I wanted nothing to do with. I don’t remember who the person was now but there had been a major new story about someone who had taken their own life as they had been dieing of a slow debilitating illness that was stealing their mind bit by bit. I at that time sat and thought about it, thought what it would mean to be in that state or worst still to be in the final stages, when you would be locked in a body with no way of communicating, I had decided that there was no way I would want to live that way. It wasn’t a glib thought or something that I couldn’t even find inside me an opposite argument that stood up well enough to give me any doubt.

Adam and I had only been married a couple of years when my MS turned progressive and it was clear from all their test that I was on that downward slope. I don’t remember when or what caused us to talk about it but I was faced with a brick wall that I couldn’t even find a crack in. I tried over several days to get him to understand that I wanted to set up a “Do not Resuscitate” order with my doctor not to take a vile of cyanide there and then. I think at that point even Adam would agree now, that part of the reason I couldn’t get through to him was his age and his lack of real understanding of what the life ahead of me was, I doubt if I would have been any different in my early 20’s, and it was clear it wasn’t an argument that I would win.

A few years ago again because of the News we talked and this time I didn’t even need to argue, he was suddenly on my side. He had by then witnessed what MS was doing, how much pain I had to deal with and how difficult my life was and would be as time went on, at that time I was in my second year of living with a gastric nasal tube as I had lost my ability to eat, although it eventually did come back. I was painfully under weight, had to use a manual wheelchair but that was limited as I had little energy to spare, clearly I was not free to enjoy the life I should have been doing in my early 40’s. We were in agreement, it was a huge step forward but one that we stopped there on, until last night. I was me who brought the subject up and as always it wasn’t easy, it never is easy to talk about the real end of your life, but with in a few words Adam said he had thought it about it a couple of months ago, but hadn’t known how to speak about it with out it sounding as though he was saying, “well it’s time for you to go”. With the clear signs that I am loosing my memory and finding talking and so on harder and harder, that we have now got to take some action, before it is too late and someone tries to say that I don’t have the metal ability to make such a decision. At the grand old age of 51 I have to make decisions about the way I die, not many of us have to really think about it until at least another 10 years time, if not much later these days. I have no doubt what so ever that if it means I might die a few years earlier than I have to, I would rather die when I wasn’t a vegetable, either sat in a chair or lain in a bed. I know that I will be taking a risk, a risk that something might happen the day after I sign it and that will be it, but I have to, as I am not allowed in this country to choose my own time and place of going. If the law was different then my choice would be different, I wouldn’t sign a DNR, not yet as I would know that what I needed to give permission for, was for me to decide that I can’t take any more and I want to call it a day.

It is a huge argument that no one seems to agree on, but clearly I am still able to decided for myself but due to my illness I can’t wait and take an overdose of something as I might not be able to do that, Adam helping me would mean him going to jail, so what choice is left. A DNR, with the risk attached that I might have an accident that I could get through, but my heart could stop, but I have signed a piece of paper saying let me die. It is a risk but the faced with that and the horror of where I will end, it is an easy choice to make. As I said it isn’t something many of you will agree with or understand, but it’s the way our world is and we all live and die within the laws that it makes.

Now, well now I have to find the forms and make sure my wishes are known in every place that it matters and hope that possible accident doesn’t happen, until I have lost all of my marbles, a strange legal game of roulette.

TV Asylum

Last night I was watching the BBC program ‘Who do you think you are?’, it is a program I like many many others enjoy and the story last night with all it’s twists and turns was really great. They had landed up in Plymouth, where I lived years ago, following the life of Greg Wallaces’ great great Grand Mother, on the surface it was a normal story for someone of her time and social standing, but then one of the shockers they exposed was that she was committed to an Asylum where she eventually died. For the purpose of showing the size of an Asylum and to explain the terrible way mentally ill people were treated, they went to the Asylum that she was committed to. As the car swept round and off a country road the shot gave a long view past a set of gates and along the drive to the main building. I know I made some sort of noise, though I can’t remember what it was, but I did follow it with ‘Oh my God, that is where I was’. Moorhaven hospital has now been converted into residential housing, I checked on line this morning and it was sold in 1993 for redevelopment, but that didn’t change the cold, blank and shocked feelings I had to see it again after so many years. I wrote before about a black period in my life which resulted in my being committed for about 2 months. I haven’t seen the place since then and until today, I had even forgotten the name of it.

I am in some ways still a bit shocked by it and stunned how in just a few seconds that the trigger of seeing a building I had wiped from my mind, can have. In many ways that is exactly what I did, I wiped it out. Yes, I did still remember the fact I was there and the odd strange small thought of the place, but not the full clear images that the unexpected viewing recalled instantly. From that point last night to right now I find I keep drifting back there, remembering strange things like the fact at that time I was a vegetarian and the kitchen had produced a vegetable pie, but it had a suet pastry on top, suet is a beef fat, at the time it upset me hugely. I remember when I first arrived there I sat in the day room, chain smoking and starring at the grubby carpet of the day room floor. All I felt was blank and all I wanted to do was vanish. Looking back at it all there are huge blanks and I can’t help feeling that although the memories have to be there somewhere, my mind on it’s own has boxed it up and isn’t keen to let me open them, I doubt if there is any good in opening them and I am not intending to but how do you stop your mind doing what it wants. It is easy to say keep yourself busy, but as we all know that only works so far, my mind wonders all the time and I often find myself staring into space and being a million miles away, today the difference is my mind is only going to one place.

It just shows how a few seconds of a TV show can effect you. This isn’t the first time that has happened and I am sure everyone has had memories stirred and in the past they have always been mixed happy and everyday things but this is so different. It has left me wondering how many people out there this happens to daily, people who are enjoying a simple TV program and find themselves catapulted into a dark painful past life. TV is a powerful force and always has been and in our modern world we all sit and watch, I had until last night never thought that such strong negative feelings, were also in it’s power to ignite.

Social Leper

I am not a great believer in coincidence but in the last 3 days I have found myself talking to very different people who have suffered mental breakdowns, something I know I can write about as I have been there. I was living in Plymouth and Teressa well she was about 4yrs old I would say. I had by that time already had 4 separate investigations by different departments as to why I was ill and all four came back as nothing wrong with me. I have mentioned this in bits’ here and there throughout my blog and went into shaded detail about trying to commit suicide, before being committed into a psychiatric hospital where I displayed clear symptoms of MS, even then I still had a problem of writing the total 100% truth, I still held back and for one reason only, the stigma attached to admitting that you lost it. I didn’t just try to kill myself once, I tried several times over a period of about 25 or so years ago, all of them came down to one statement that I used and told the doctors I was a nutter, ‘I can’t cope’. As I said in my previous post, you try coping with an energetic 4yr old by yourself whilst in a full blown relapse, I would guess anyone who has been there or is right now ‘I can’t cope’ would sum it up well.

Talking about something that was so long ago is easy as there is a perception in life that as you get older you become more sensible and you should understand the world better and be able to deal with all that life throws at you without question, well like a lot of these assumptions they are complete rubbish, I am no more able to deal with things now than I was them, the difference is I have the words now, I have the experience and I have my diagnosis. As I said the other day depression for me vanished then as I at last knew what was happening to me. What I missed out was a huge area in the middle and areas which in many ways were harder as I was according to the doctors cured. In that time I labeled myself as being ‘of a depressive nature’ and I would go to the doctor for help and they put me on a new course of antidepressants as it had helped before, it really does help with pain I know that.

Talking this week though made me realise that depression is still seen as something that still has to be hidden, I don’t think I hide it, I just don’t talk about it unless it is relevant at the time, I realised this week though it is always relevant. If you arrived at work tomorrow looking tired and not at you best and when asked if you were OK, they expect you to say that you have had a bad night or you are a bit off colour, if you turned round saying you had spent the night getting drunk and looking a box of tablets, they would immediately run to the boss and get what they think is the help needed. There a millions out there right at this second who did just that last night, it doesn’t always mean they are even really thinking about killing themselves at that second, it just means that last night was a bad night and there will be many more like them without a single pill being swallowed. They need help, yes most definitely, but not to be labeled as a nutter, not to loose their job or be judged by all the non medical people around them, or avoided because people don’t know what to say.

I sat for many nights and days in that exact position, on three occasions I actually did take the tablets, the doctors didn’t understand exactly how I survived the last one other than I was lucky as I through-up and most of what I took came out, but they thought I had destroyed my liver, it clearly recovered. On the times I did try it, no one could have stopped me, I was always in a bad relapse and at the point where I couldn’t manage to deal with the pain, the numbness, my eyesight and all the other MS joys I wasn’t depressed, I was desperate, but that is splitting straws.

I wen through it and I am here, it never stopped me functioning as well as I could, it never caused me to harm anyone other than myself and it made me just as disabled as MS and all it’s friends have done to me now. That is the point though, all that has changed for me is the name and personal understanding, huge changes and although not the facts that fit everyone, some of those out there right now looking a the bottle or box may well be similar. MS hasn’t made me a leper, why should depression make them one?