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…..