The good wife?

I found myself feeling just a little lost yesterday afternoon. It just shows what happens when I try to be a good wife, Adam style, and forget about my routine. Every day when he comes home around 12:30, he always offers to make me some lunch and to bring anything that I might need to me here in the living room before he returns to work, not just once, but at least twice. I know, that what he is really saying is, “Let me do this for you, that’s why I am standing here, I came home for you. So let me, as that way I know you aren’t doing too much, and I know you are safe. I am able to do all of it for you, it doesn’t hurt me at all, it’s easier for me. Look, I have two good arms and two good legs, and all I want to do is help you. So please, let me do this for you”. He’s really good at compacting his words. Actually, I know because I have had both versions frequently. So for once, I said, “Yes”, and told him what I wanted for my lunch. Everything was fine, and yes, it did mean I wasn’t wheeling around the house for no real reason. The problem came at 1:30. That’s the time I normally have my lunch.

Over the last week or so, I have been turning it into a sort of new routine, one I’ve become strangely attached to. I never used to take a break, lunch was gobbled as I worked. But recently, I have been making lunch and sitting just in front of the TV, where I can actually not just see it, but read all those normal fuzzes things, called words. Because of my tray/bag, I can do this both safely and comfortable. There is something about this break in my day, that has suddenly become something I actually look forward to. That simple switch from one screen to another, creating this change and feeling of doing something totally different, is somehow refreshing. But when 1:30 came around, I didn’t know what to do with myself. I had this space in time, without any need to eat and nothing that I wanted to do. That’s not to say that I didn’t have things I could do, just not what I wanted to. I was at a loose end and it was odd. It is amazing just how quickly when something makes you feel good, that it becomes important for that feeling and for nothing else. It is the whole ritual that I have developed around it, the processes from start to finish that although it takes less than half an hour, I missed. I knew there was no point in just going and sitting in front of the TV, as, without the rest of it, it would be wrong. I wasn’t hungry, as I had been fed, but I was just sitting here twiddling my thumbs and trying, to come up with a replacement, but I couldn’t. I guess that it was a good example of one of those things, that was done for the right reason but came back to bite you.

I had a brain wave of sheer genius a few days ago following my most recent removal of the scab on my right knuckle. I don’t know why I didn’t think of it before, as I was sure from the way that the slightest touch seemed to be enough to keep removing it, that it was the craggy profile, not the body of the scab itself, that was the problem. I was sitting here filing a rough nail when it suddenly struck me, file off those bits that might catch. As the file that I use is a glass one and actually feels really flat, I was sure I could do it. I was really careful about ever stroke and it worked perfectly. Since then I had caught it three times, in exactly the fashion that I know should have been accompanied by shooting pain and blood, without the slightest problem. I have never seen a shiny scab before, but I now have one that catches the light and my eye when it does. It’s odd, but so far safer and with a much greater chance of actually healing totally than it has ever had. A new trick to add to my book of them.

I don’t know what is happening to me just now, my life recently has been like a rollercoaster. One moment I can’t find my own brain and the next, I have perfect clarity. The same can be said for my pain levels, my breathing, my balance and anything else you care to mention. The bad side of it isn’t just that I don’t know what is going on, but it is upsetting Adam as well. As is his way, all he seems to see is the bad moments, he ignores the entire evening of talking normally and jumps on the two seconds that I am again squeaking. Last night, I had to almost physically push him out of the bedroom, as he thought thanks to my voice, that I was upset. It wasn’t helped when I turned to tell him I was fine, that I nearly fell over. I am beginning to believe that my body is in collusion with him, as it only does these nutty things when he is around. Clearly, that is a lie, but it feels as though it does recently do it more when he is here to witness it, not that long ago, I could keep it hidden, now I don’t have a say in it. I thought for some reason that once I was in my wheelchair, that the number of times a day that my legs went from under me, or my balance would vanish for a second, would diminish. After all, I am only on my feet for the shortest of distances in the transition from one safe spot to the other. All those dangerous distances are now covered on wheels, so it has to be safer. Oddly, it’s not. I honestly believe now that it just has an array of daily tricks to perform and regardless of what I do, it will interspace them throughout the day at each opportunity, preferably if Adam is here.

I quite honestly believe that even if I made this house 100% wheelchair friendly, if we rearranged our lives and lifestyles to the best practice that any OT could come up with, that nothing would change. There is one thing that disability brings with it that is unavoidable and that is the unseen and the unexpected. I know that you could say that for any life, but the odds of my having an accident, even in perfect OT land, compared to someone who is totally fit and healthy, are a million times higher. No one can plan for those twitches that sends a cup flying, or the sudden jerking of your leg that means it is crushed against the underside of a table. The burns and bruises, will always be the same, in OT land or right here in my home, with my lifestyle. There is also another unavoidable fact, the progression of our health, bring a progression in the frequency of the unexpected. Of all the things that are suddenly active and happening to me in the past month, one that to me is more alarming than any other, it is those sudden jerking spasms. Until recently, spasms to me had been either along the line of grasping cramp like muscle actions or the rapid tremors. Prolonged spasticity is painful and can last anything from 30 seconds to hours, tremors on the whole for me are more annoying than painful. I have only occasionally been bothered by the fast jerking muscle actions in major muscles, limbs suddenly jumping around, happened only once in a blue moon. They are now happening more often, every few days or so. Along with them, another form has also increased, the single sudden and violent jerk like those many have when falling asleep. In the last month, they have been happening every few hours and sometimes every few minutes.

When your body suddenly appears to be out of your control, it is disturbing to say the least and dangerous at their worst. So far I have been lucky, but that luck hasn’t been missed by me, as it’s clear how easily I could cause myself damage, not to mention my home. Limbs aren’t supposed to do these sort of things. They are supposed to be under our control, not without minds of their own. It was something that I have slowly got used to in my hands, hitting wrong keys, not quite getting a proper grasp on something as my muscles had a different idea, is normal. For you leg to suddenly vanish, or not to obey the message to move, less so. To be sitting totally still and for your leg to suddenly jump, or you knee to straighten, not at all. Life in a body, where that body has as many brains as it has muscles, and those brains refuse to talk to their neighbours, far less the distant cousins, is interesting. Note the diplomacy. There are a lot of words that could replace “interesting”. I just wish I could remember exactly how long it takes for it to become normal. The fact still remains, it doesn’t matter how much cotton wool, accidents will eventually happen. I just hope that no one tries to, as believe me, as it is one occasion when I won’t play the good wife.

Please read my blog from 2 years ago today – 08/10/2013 – More than normal lose

There are always those I just can’t win time, you wake-up cold and decide to make some porridge for breakfast, something that went down beautifully but within seconds had me well beyond warmed up, I was sweating. Then within 15 minutes of taking off my top dressing gown…..

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…..