Things happen

Posted on September 18, 2016 by livinginalimitedword

In the past few years, I have never had the slightest problem sleeping. In fact, if anything, I have slowly started to sleep more and more. My record so far, is 15 hours in just one day, 13 of them without a break. But in the last few weeks, something odd has started to happen, that I really don’t understand. Firstly, I have started waking up, sat on the edge of my bed. How I got there, I have no memory of, all I know is that I wake up because my head has dropped forward suddenly, it’s that snap action that makes me wake. Often, though, just long enough to sit upright again, then it repeats itself. Eventually, I wake and go to the loo before I head back to bed and sleep again. On a bad night, I can go through all of that three or four times.

Then came the pièces de résistance. Having gone through that palaver a couple of days ago, after going to the loo, I went into the kitchen to have a cigarette. From the moment that I settled into my wheelchair, I felt quite awake, and very much in need of that cigarette. I think I had had about three or four puffs, before settling my wrist on the counter top, with the cigarette held over the ashtray. I find that at night, doing something like holding that small tube between my fingers is hard, many have flicked their way across the room, hence my resting place. Then, well then, half way through my cigarette, I fell asleep. I didn’t wake until 3 hours later. I was slumped forwards in my wheelchair, my eyes were in line with the second draw down in the kitchen unit, and my cigarette burnt out in the ashtray. I don’t remember even feeling tired, or that I was starting to drift, it must have been a split second from awake to asleep. When I did wake, I felt exhausted and incredibly sick. Despite that I headed back to bed at speed, only to wake another 3 hours on, sitting on the edge of my bed. I don’t have a clue what is going on, or why this is happening, I just want it to stop. Nothing like this has happened to me before and to be honest, the worst thing is, I’m not getting the kind of sleep that I really need. When I sleep, my muscles have a chance to rest, something they really need, so the fact that it leaves me with muscles racked in pain, is just the cherry on top. After falling asleep in the kitchen, I’m now worried where next I will wake up. Maybe half way across the hall, or sat on the loo.

I might not have the answer to that one, but I am hopeful that I might have found if not the answer, something that should improve my eyesight. It has been getting worse and worse over the past 11 years, my left eye is affected by my PRMS, but I have Macular Degeneration in my right. It is something that affects a lot of people in later life, for me, well like everything else in my life, it arrived early. By chance, I was watching a medical show on TV the other day and they tested out some research on a way of improving everyone’s eyesight in later years. I was sat there waiting for them to debunk it, as that has been the results of so many of their tests, but not this one. Apparently, our eyesight is reliant on three what the call, macular carotenoids: lutein, zeaxanthin, and meso-zeaxanthin. All of which can be found in brightly coloured fruit and veg, especially yellow and red ones. The problem is that you need to eat so many, that nearly no one does get enough, especially not enough to repair the damage done by time.

Normally this show doesn’t recommend that you take supplements of any sort, they believe in the natural angle, but not this time, this time, taking supplements is the only realistic way to get enough. They tested it on a mixture of people and not just for anecdotal results, they carried out medical tests that can measure the levels of carotenoids in your eyes. In just 90 days, the improvement was huge, something the scientist said would continue. They recorded not just being able to see colours more brightly, but they could also see finer details, that was the point I woke up to. My eyesight is atrocious, almost everything that I see has a blurred effect to it. It doesn’t matter how close I am, the edges are fuzzed. If I cover my left eye and look at something with just my right, I have total blind spots, with tiny gaps, like looking through a piece of heavy lace. If either of these things can be fixed, or even just improved mildly, it’s worth taking one more pill a day. The pills I’m taking are called “MacuShield”, I will give you reviews as time goes on, if they help me or don’t, but even if my eyesight was normal at the moment, I would still take it, as everyone’s eyes fail in time, according to their results, this could prevent it from happening and for less than £0.02 per day.

I have had to give up so much from my life that I loved, just because of my eyesight. I don’t expect to be sat here in a year from now, doing the finest of needlepoint embroidery or working with seed beads, but it was my eyesight that took these passions from me, long before my dexterity joined in. It is one of those things that we all take for granted, we open our eyes and the world is there, in all its glory. I really do fear the day that I find nothing, as I had a taste of that about 10 years ago. It lasted two days, I could still see shapes, but little else, it didn’t matter what I tried. I was pretty close to blind and at first totally terrified. I spent the whole of the first day, sat here bent over trying to make out something, anything of what was on my computer screen. All the time I was trying to work out if I could still manage to work. Clearly, it got better and I continued to work, but I really don’t want to go through any of that again.

Please read my blog from 2 years ago today – 18/09/2014 – A growing danger

I hoped that I might have a message from Jasmine this morning but so far nothing. It’s really hard when you receive a message like hers’ as technically there is nothing I can or anyone else can do to help her, as she could be anywhere in the world. For some reason yesterday, I had it in my head that she was in the…..

It’s time to shift

Posted on May 1, 2016 by livinginalimitedword

Just as I expected, yesterday afternoon went badly, as did the rest of the day. If you thought my description yesterday of the ills of having a shower was possibly an exaggeration, without going into more detail, I will simply say that the reality was far worse. By the evening, I was totally unable to find peace of any kind. Between the pains that were around my body, all fully expected, and the spasms in my guts that made just sitting in any position that I could find, almost impossible, I was in a world beyond any normal pain. It is rare for me to have both sets of pain working against each other, and I hope that it remains just so. I also had to take a double dose of my metoclopramide to eventually knock the constant swells of sickness on the head. It’s best to say, that I was not a happy chappy, in any regards what so ever. I even on a couple of occasions, allowed Adam to push me around the house in my wheelchair, as it was an action a step too far for my muscles to tolerate. The greatest joy I had yesterday afternoon, wasn’t the unsticking of my hair from my head, but it was climbing into bed and finally drifting off into a much-needed sleep.

We all get bad days, and the only thing we can do is go with them. There is no way of fighting what happened to me yesterday or avoiding it. Life sometimes just takes over and you quite simply have to go with it and hope, that that set of events, don’t align themselves ever again. In this case, the odds are on my side, especially as I wouldn’t normally take a shower if my stomach is playing up, but I know without a seconds thought, there will be similar events ahead of me, just with different sources. We all grab hold of our good days, we celebrate them and we make them our memories. But trying to ignore the bad ones, is madness. All any of us can do is go with them, work our way through them, knowing that we can expect the next one to appear in the not to distant future, but praying it isn’t tomorrow. 10 years ago, I wouldn’t have even been able to imagine the things that my body does to me now. I would even go as far as to say, that what I now see as an OK day, would back them have been branded as hellish. That’s the problem with progression, our perspective on life progresses just as everything else does.

I don’t hide any longer from what I know is my truth. I use to, I used to pretend that having PRMS wasn’t going to change my life, nor were any of my other conditions. I carried on working as though nothing could touch me. I worked myself into the ground day after day, after day. I felt just like I did when I became a DJ. These days, a female DJ isn’t anything unusual. I was the only female DJ in Scotland. No, I’m not talking about on the radio, although I did turn my hand to that and didn’t like it. I am talking about the DJ’s you saw everywhere in the 90’s, in all the top city center bars and nightclubs. I worked 7 nights a week, often more than one gig per night, I had to be not just as good, but better than the guy’s as everyone, expected me to fail. I didn’t and I made a full-time job out of it, as I was on my own and I had to pay the bills. Becoming chronically ill, was just the same. I didn’t just have to be good at my job, because I was ill I had to be the best. I pushed myself into the ground and what for, to be finally made redundant. Medically, I could have given up work at least 5 years before I did, but I was so pigheaded, that I pushed and pushed and pushed. I was totally blind to what was ahead of me, I never once saw me being like those I saw in the hospital. I was stronger, better and abler. I was wrong. My perspective has been changed by my health.

I now know that I won’t have any great days. I now know, that there will be more bad days than good days ahead of me. I now know, just how ill I am and what my future is. It’s a level of acceptance that is way beyond accepting your health. No one would survive the first few years if we didn’t accept that we are ill, that we need to take medications and use aids. Accepting that you have reached a point where there is going to be more bad than good, is something else. If I’m honest, even being told that I had at most 10 years to live, didn’t make me see it. Somewhere in this crazy head of mine, I still saw this stylised view of carrying on as I was until the very final stages. I saw myself going on as I was, then suddenly in the last few months, things would get bad, I see now, it’s just not that way. Life just doesn’t work that way.

I don’t know exactly when I woke up to this new truth. It wasn’t like when I accepted my health, that was a clean line. I didn’t, then I did. This has been gradual, it built up, bit by bit over the last few months. In the last few weeks, I have almost felt myself waking up to the truth. In those weeks, I’ve searched for the good days, the ones I almost don’t really remember having. There weren’t any. My best days, are now what 10 years ago I would have said were horrendous and almost unbearable, which says almost everything. You could say that the good has gone, but that’s where perspective comes in. I now have to forget the “good old days”, they are gone and I have to let my new perspective fully move in. Life isn’t going to be the way I imagined, it’s going to be reality. My health is failing and I have had to accept that, otherwise, I know without a doubt, that I will slip into depression. That’s where it starts, having our dreams destroyed. So I’ve said it, I’m into that phase I didn’t want to believe existed, the one that starts with changing what I see as the bad, into the good.

Please read my blog from 2 years ago today – 01/05/2014 – A trick of the mind

Recently I have been posting pictures of wonderful landscapes and sights on twitter and Facebook, the kind of places that all too often just seem to have stepped out of our imaginations and are suddenly there in front of us. Some I have selected as I just knew they would be the sights others would enjoy but most are sights I enjoy, places I wish had been here in Scotland so that I could have seen them, places that all seem to have a moody and mystic feel to them, the places that somehow I see myself in. Travel has always been something I just wasn’t interested in, after several horrid childhood holidays abroad, where all I wanted was to go home, I have never left the UK again. My first marriage found me living all over the country, but it wasn’t until we moved to Rhu that I started to feel as though I was in a place that felt like home, maybe that had something to do with me finding the strength to walk…..

Here’s to tomorrow

Posted on April 29, 2016 by livinginalimitedword

I’m cold, the internet is once again causing me huge issues and I desperately want a shower, and as I can do nothing about any of them, it’s not the best start to the day. Waking up to a bedroom that was so cold, I didn’t want to get out from under the covers, isn’t really what I would expect at the end of April. At first, I was telling myself that it was just me, but the thermometer confirmed that the weathermen had been right with their forecast, a touch of winter has returned. In this house, it’s a huge touch, even when they get it right, they still somehow manage to lie. Yesterday, my internet service was rock steady, today, it has already been down for nearly an hour. I am really now at a lose, other than ripping out all the wiring and buying a new router, I don’t have the slightest idea left, as to how to fix it. And as for the shower, the new one is due to arrive today, followed by the plumber tomorrow, so we’re getting closer, but I lucked out there as well. None of which helps me at all, at this very second. I guess it just shows that all of us, healthy or ill, are always susceptible to outside forces, that we have no control over. I might be feeling crappy because of my health, but there is just as much a chance, that all of the above, is just pulling me down in a perfectly human way, something, that is actually very easy to forget.

Being ill, I know for one that I often forget all of that. It is always easier just to say that it’s the fault of my PRMS, or that maybe I’m just not quite getting enough oxygen. I feel rotten and I have a resident reason to do so, so why look any further? Why even allow for the possibility that it is something else altogether? No, it’s just easier to blame my health. Let’s face it, if you hadn’t had a shower for over a week, how would you feel? Yes, I’ve kept myself freshened up, and an extra layer of deodorant works wonders, but now that my hair is starting to stick to your head, well it’s not the best. Adam has offered to help me, but trying to lean over the sink, while he pours water over my head, just isn’t going to work. My body won’t bend that way, and the pain that it would cause me, well I’d rather my hair went dirty for another day. Logic, is one thing, reality, is a totally different. This is where being housebound really stinks and in more than one way. Anyone else would be able to deal with this situation with ease. Even if you didn’t know someone to ask, if you can use their shower, well there is always a swimming pool or a spa, you could visit, somewhere to go to get clean. I’m stuck, I can’t go anywhere.

The first thing I did when I got up this morning, was to light the fire. I couldn’t shut the living room door to keep the heat in, as I was waiting for the delivery of the shower. I knew that without a doubt, if I did, the buzzer would go and I either wouldn’t hear it, or I’d take so long to negotiate the obstacle course in my wheelchair, they would be gone, by the time I reached it. I so wish that the intercom was here by my desk, but it’s not, so I had to let the precious heat from the fire filter it’s way around the house. Is the picture starting to form, add in now the fact that my computer is frustrating the hell out of me, and life is just peachy.
I feel rotten, take your pick which is it, life or my health? At a guess it a good mix of both, but it’s taken this extreme example of my life, for me to start questioning more deeply, just what might be making some days harder than others. As I said, it’s always easiest to blame the obvious, the condition that is causing us pain, that we’ve lived with for years. Sometimes, we just have to accept, that like everyone else on this planet, life gets us down too. Those days when our tablets just don’t seem to be working as well as normal. Those days when we’re tired, when we don’t have the energy that we need, might just be being made harder because something else in our life is wrong. Just because we are ill, doesn’t mean we suddenly have become immune to reality. If someone in perfect health, was sitting here instead of me, totally unable to change a single thing I have written, I’d put money on the fact that they too, wouldn’t be feeling exactly at their best. The problem with reality is, just like catching a bug, if your already weak, it’s going to hit you even harder.
This last week would have tested most people. Yet, I am still expecting myself to be superwoman, despite the fact that I haven’t even been equal to her little finger for nearly a decade. Why is it, that that is so hard to accept? I suspect that I am no different from anyone else in my position, somewhere inside the mess that life has turned me into, I still can’t fully accept, that I’m no longer the me, that I once knew. Yes, I’ve accepted my condition, but that’s totally different from accepting that the core me, has had to change as well, and that’s really hard to do. Unlike someone who is facing old age and says that inside they’re still 20, accepting that your entire life has been changed by illness, so much so that the simple everyday pressures of life, are enough to actually make us feel worse, is a real biggy to get our heads around.

Please read my blog from 2 years ago today – 29/04/2014 – Breaking the monster

There is something very odd about reading your own words back, especially when they were written a couple of years ago, it is like looking at yourself through someone else’s eyes as you had totally forgotten every word of it, but it is still familiar. I don’t read all the posts linked at the bottom of each page, just glance through them normally, but reading how I described things that were relevant to me at the time, is enlightening. I realise just how we all change, even over such a short period of time as two years and even when you are in your 50’s, when you would expect the changes to have either stopped or slowed down at the very least. I know that every bit of information we add to our knowledge daily has to change us in some way, that is just logical, but the fact……

Staying human

Posted on March 11, 2016 by livinginalimitedword

I’ve just completed my first 24 hours on my new tablets. Right now, I have totally mixed feelings about them. Thier called Mebeverine, I wish I knew where they get all these odd names for drugs, not the unpronounceable ones, they are down to the chemical make up, but the other names, that seem to vary from country to country. They make it very hard often to discuss how they work, especially, in this internet world where we can be talking to anyone from anywhere. Anyway, I have already managed to miss one dose, but I took it as soon as I remembered but it does mean, it couldn’t do its full work. The problem is, they aren’t taken at the same time, or anywhere near all the rest of the drugs that I take. Mebeverine has to be taken 20 minutes before meals three times a day. Even for someone with a brain, I am sure many forget them frequently. For someone like me, well, they are a ticking timebomb. Breakfast and lunch I managed fine, dinner time, it was an hour after I ate, before I even thought about them. This morning, well breakfast was 20 minutes late, which I have a feeling might just be what will happen a lot going forwards.

In many ways, I’m not sure if this first day is a truly fair test, as I following my 24 hour fast after my night of being sick, of course, means that my whole intestinal flow hasn’t settled properly yet. Three days had past without going to the loo until today, as my body doesn’t like it when things don’t happen just as they should. Nor is it helped by the fact that I haven’t really been feeling totally myself over that period. I’m not sure how to describe it, other than just odd. There’s been a lot of chest pain, breathing issues, and a huge and almost constant desire to lie down, as I feel somewhat light headed. New meds on top, well as I say, not the best test. On the good side, the pain felt less during the evening, but I woke once again with pain in my back and down my upper legs, that didn’t leave me, until three hours later, when I went to the loo. Ever since then, the pain in my upper abdomen has been bad. So do they work, well I’m really not sure, but they clearly don’t work the way that I wanted them to.

Life seems to be frenetic just now. Between my health being more active, the problems with getting to actually see a doctor and then just for fun, life threw something else on top of all of it. Yesterday morning, before Adam went to work, he told me that the washing machine had broken overnight. So yesterday afternoon, I had to go online and buy another one. I know that isn’t difficult these days, but it’s always one of those extra hassles, that life seems to find. In the past twelve months, we have already had to buy a new fridge freezer, new mattress, and a new cooker, now it’s the washing machine, what next.

I always thought that one of the joys of buying online was that you can totally avoid those annoying shop staff who try to sell you a ton of stuff on top, that you don’t need or want. Well, I was wrong. The phone rang this morning and there she was, all chirpy and smiling down the line. Her breezy good morning, her whole way of going over where we lived and then went into telling me the details of the machine I had bought, but nothing about it being on its way. I feel really guilty now for what I did next. I had already naturally stuttered and muddled my words a couple of times, and I saw a window, a way out of having to go through all that I didn’t want. I stopped her dead, and stuttered and stammered through the following. “I’m sorry, I’m not taking all this in, I have an illness that affects my brain, email me, please?” My acting skills are clearly honed, as I was patting myself on the back all the way through it. I have lived for so long hearing it, that putting it on, was easy, too easy and so wrong of me. She went straight to the end of the call and confirmed that our machine would be here in two days, exactly as I already knew.

I have only used my health in that way a handful of times. Every time I have done so, I have always felt guilty. It’s a guilt that I can’t help, as it feels so wrong of me, so wrong to make out that my health is worse than it really is, in that instant. Putting it on is just so wrong when you have spent your entire life, trying to cover it up. It’s wrong, because if I gave into the temptation at that second, might it just become too easy, to do such a thing. It’s wrong because, yes, that is where I am at my worst and might be, all the time in the future, but not now, not in this second. It’s wrong because I know without a doubt that there are people out there who don’t need to put it on, to push all the bad buttons, that’s their life and they so wish that it wasn’t. Yet, I did it. I just couldn’t be bothered listening to someone who I knew, was going to try and sell me insurance that I don’t want. I didn’t want to be on that phone because the phone freaks me out, I did it because I wanted to be anywhere, but on the phone. But that doesn’t make it right, so I feel guilty about it.

Chronic illness makes us feel guilty over so many things, from the occasions when we invited to attend, but genuinely couldn’t. To the ones we were invited to but used our health as an excuse not to go. It makes us feel guilty because we can’t go out with our partners, that their lives are tied to ours and what that means for them. We’re guilty about not being able to work, to contribute to both home and society. For sitting still, day in day out, watching out bodies turn into flab and being unable to do anything about it. Guilty for doing nothing, while we watch our partners do all the things we once did. It doesn’t matter what others say, how many times you’re told you’re being silly, that you can’t help how things are, you still feel it. Every time they fetch and carry for us, wait on us, aid us and care for us, there is always that guilt, as it shouldn’t be this way.

Guilt comes in so many different sizes, and from so many different places, but whatever the size of the pain that it causes, it always hurts. Unlike other pains, there is no magic pills to take, no relaxation or meditation, this is one pain that’s there, and even when you think it is gone, something always reminds us, and there it is again. It’s that pain that reminds us we’re still human, that we’re people who have hearts and care, that we have a conscience. It doesn’t matter how ill we become, all of those things remain true, all of them never just vanish. Our health may eat away at our bodies and brains, there are a million things that we have long forgotten, but somehow, we never forget how to be human. For us, it just makes life harder, but for those around us, it’s probably a good thing. Guilt is our monitor, our governor that keeps us being us, and removes the temptation to be, or do, anything else.

Please read my blog from 2 years ago today – 11/03/2014 – Hope dashed

I was listening to the news this morning as I always do when an article about MS and a new drug that has just been licensed in Scotland. I should have known before I even looked on Google that there would be some reason why this drug like so many others, would be of no use to me at all. It has happened time and time again, drugs appear and all too many of them are purely for relapse-remitting MS, so when I started to read and saw that it actually was for my type progressive relapsing my heart lifted and I set off to read the medical descriptions…..

Life happens to us all.

Posted on May 2, 2013 by livinginalimitedword

I really don’t seem to be getting anywhere fast today, I know I don’t need to be speeding through my day but it would at least be nice to actually getting somewhere, anywhere rather than round and round on the spot. With the way my health has shifted in the last few months I am rapidly getting the impression the the long desired time to write my book is never going to actually appear. I know I’m not working and that what I do with my time is up to me, but that time has gone from reasonable to non existent. I know that my MS changes and changes again, but I feel as thought my waiting for an improvement or any change for the better be it tiny, has now gone way beyond the time scales I would expect. I’m not giving in, just being realistic, I don’t have the energy to do anything of any importance any more.

Yesterday continued just as I laid it out in my post, no comfort, no relief and no change until very surprisingly about 10 minutes after I climbed into bed, I was at last free of it all. It felt at first that it was going to get worse as when I lay down, I could feel my heartbeat, not pounding or racing, I could just feel it doing what it’s meant to do, but without us ever knowing it was there. Once again by slowing my breath and making my breaths shallow, it all settled and I drifted into sleep. It is extremely exasperating when you try all day to make an improvement without success, then suddenly something you have tried dozens of times, works! I really do think as time goes on that MS is some sort of perverse joke on humans, if ever there was a condition that so neatly took all the basic things in life and made them impossible, this is it! Nibbling away at the basics, like walking, thinking, breathing and eating, makes everything else impossible, covering the spectrum of basics means it does it with style and total success.

I would love to know if I am right but I am more and more getting the impression that MS effects mainly the sort of people who never want to stop. I have read all to often that those effected are like myself, those who work and work and work, never wanting to stop until there is no choice. It could be I admit that those are the people who are also most likely to want to write to fill the time that has been forced into their lives, ruling that out isn’t easy, but I here over and over that MS destroys the over workers and over productive section of society. I constantly read of people just like me who didn’t have jobs, they had careers and ones where what was expected of them, was always a fraction of what they actually did for their employers. Also like me most seem to have been the house proud, always tiding, always improving things, but then suddenly hit by something that steals all the things that meant so much in our lives. As I said it could just be that we are also the ones most likely to write but the numbers do seem rather high to just be coincidence. But there is one further twist that I find more bizarre than just the fact we are similar in our work ethic, but all of us who couldn’t sit still seem to have also adapted to our enforced life styles.

If you had known my 15 years ago you would have seen me as the last person possible to be able to just stop. Getting me to stop for an hour was almost impossible, to stop me for a whole day or months would have appeared only as a possibility if I were in a coma. How I went from there to here, not with just reasonable ease is just the start. I would never have thought that I could have found such happiness in such a simple life style. It is so far away from what made me happy in the past, chalk and cheese are actually too similar to each other to describe how I see both worlds. I suppose that it just shows how adaptable we are as creatures and how no matter what life throws at us we do that adaptation and move on again. No one wants to have their lives ripped apart or actually wants it to happen, but if this has taught me anything it is simply there is actually nothing to fear in anyway from anything that life hits us with. Somehow, no matter how difficult it seems at first, we do adapt, we do continue to live and to have a life. Adam has openly said that he doesn’t think that if this had happened to him, that he would have been able to cope with it, as though I am some sort of super human, but I’m not, and if it had happened to him, he would have coped. I thought the same way as him before the rug vanished from under my feet, yet here I am once again standing in a different place than I thought I would but I am still standing and so would he be or you would be. Until it happens to you it seems so alien and so difficult, but it isn’t, it’s just different.

At some point be it through health, age or accident, we all will be faced with a life that as a mid twenties, ladder climbing, happy go lucky party animal we truly believed would never happen to us, but it does. At some point we are all faced with having to change, having to rebuild our values, what the quality of life means to us and what we can physically and mentally do. What I have learned is there is nothing to fear as you don’t have a choice, it is happening and you are along for the ride like it or not, so you might as well look for those good and fun points, then make the most of them.