Not again

There seem to be so many things that come with PRMS and Fibro that seem perfectly designed to drive us straight up the nearest wall. For example, I woke this morning to discover, that once again my “nappy” was wet. It’s not the best start to my day, it wouldn’t be for most people over the age of 3, but for me, it has another implication, one that says today is going to be a wet day. Not surprisingly, that never fills me with joy. It’s four months now since I first woke up wet, and the NHS supplied me with a mountain of pads. Yes, I have accepted that this is now part of my life, but I’m not sure that I will ever get used to it. Back then in those first days when it all started, I thought that that was my life, that every day from that moment on, I was going to be constantly wet. I was wrong. I can actually go for several days, with nothing more than a few drips, but if I wet myself over night, well, it fails almost every time I need to go, that day and often for several more. Like everything else in this mad life of mine, there is no rhyme nor reason, but oddly, I have noticed one thing that doesn’t make a lot of sense. I never start wetting myself, when I am sitting. It only happens if I am standing or lying down, but once started, it doesn’t matter what I do, it keeps going until it’s happy to stop.

Throughout my life, there has been one thing that I have held onto tightly, and used at every turn, logic. Everything had to be logical, or it quite simply drove me nuts, that was, until I managed to understand it. If there was someone sitting out there, wanting to find the perfect way of bringing insanity into my life, well they found it. Not one symptom of either of those conditions, can you apply logic to. To me, the most natural way for my body to think it was OK to open my bladder, would be when I am sitting down, yet it chooses to do so in the two positions, that make no sense at all. Just another symptom, that there is no logic to in any way shape or form. Every single day of my life, my body does something that is totally illogical, on every level but one, it’s MS. Quite honestly, I am more than fed up with everything that is wrong with me, being put down to MS. In some ways, it’s more annoying, than when I didn’t know what was wrong with me, because back then, I at least had hope that one day, someone would be able to fix me. There is no logic to MS, no one understands it, so why do I still think that I should? So here I am, stuck with it, incurable, illogical, and totally annoying in every way that I can think of. OK, I’m having a rant, I don’t do it that often, but if I didn’t, well I really would be too good to be true.

I guess all of us struggle, no matter how well informed or how long we have lived this way with certain aspects of our health. In fact, the mental battle is without a doubt the biggest battle of all. No matter how long ago it was that you made your peace and accepted your life as it is, there are always going to be those things that niggle away at you. Acceptance isn’t a one step journey, you go through it again and again, taking it one step further, but you never complete it, because as long as your health keeps progressing, you are going to have to keep accepting. Right now, I believe I am totally at peace with the fact that my life is slipping towards its end. I’m even at peace with the fact that the doctors believe, that I will die from respiratory arrest. Yet something so tiny in comparison, like wetting myself, can send me into a rant. I will never totally complete that journey, until moments before I complete my life. That is, unless, I do what I normally do, have a somewhat delayed reaction. Well, I really should have had that rant four months ago, but it didn’t happen them, it waited until now.

Just as we don’t know what our bodies will do to us next, we never really know how we will react to it, until it happens. It doesn’t matter how many times we have read those symptom lists, or how many other people we know, who are further down the line until something happens to us personally, we have no idea, what our reaction will be. I remember years ago, about 2 or 3 post diagnosis, I had made my mind up that I could deal with anything other than incontinence. I did actually at the time, believe that that would be my signal, that it was time to end my life, but I’m still here. It really isn’t nearly as horrendous as I thought it would be, in fact, it’s actually really easy to handle. For some reason, though, back then, it sounded so disgusting, so degrading and so nasty, I couldn’t see how anyone could actually live with it. I don’t need to paint the pictures that I had in my head, I’m sure you can manage that one yourself, but the reality, is so different, that I actually felt nothing but relief at first. Maybe, that explains my belated rant, the relief has run out and reality is dawning. It’s just yet another annoying part of being ill.

Without a doubt, our opinions change as we grow into our health. No matter how annoying being ill can be, there is also a growing peace that comes with time. I doubt anyone can be angry forever. I for one, know that most of the time, I am now quite content with the way my life has played out, it wouldn’t have been my personal choice, but it’s not nearly as bad as I thought it might be. I might still get frustrated at the lack of logic in my life, but it’s honestly not a life that anyone out there couldn’t live. Maybe one day not too far in the future, I’ll wake without that feeling of dread, but a feeling of normality at the start of just another day, wet or dry.

 

Please read my blog from 2 years ago today – 26/09/2014 – A spot of luxury

I have just wasted about 5 minutes trying to understand one of those stupid text messages sent to my landline, why people think that automated messages are understandable I really don’t know. I still didn’t manage to write down the garbled website name they wanted me……

It’s time to shift

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…..

That next step

I am coming to the conclusion that how I feel now, is probably how I am going to remain feeling. It has been too long now since I felt any other way, for it to go backwards. The problem with haveing a condition that is both progressive and has flares is actually telling the difference. Not all flares are wildly dramatic, unlike my understanding from other blogs that I had read. From them, I thought all flares appeared suddenly and totally destroyed you. In fact, I thought it wasn’t a flare unless you became bedbound, had a wildly dramatic change in a symptom, or found yourself in the hospital. Wrong. A “flare” is any unexplainable change in your health or your body. It’s as simple as that. The key word is change. It can be anything from finding yourself more tired than usual, to losing the use of a limb. If it hasn’t happened before, or not to that extreme extent, plus it lasts more than a day, then that’s a “flare”, just as much as the dramatic stuff is. The final definition of a “flare” is, it also goes away again, maybe not completely, but they always settle down to a large extent. Yes, that does mean with the milder stuff that you can’t be sure until it’s gone, just what is happening to you. Which is why I started to refer to much of my health as being phasic, rather than just having flares and progression. Especially, when I reached the point where there wasn’t a symptom that I hadn’t had before. Health more than any other thing proves perfectly that nothing in life is just black and white. Hence my need for the third state. Progression is my everyday life, phasic, the humps on that road and flares, are the car crashes we can’t escape. Three states make far more sense than just two.

Before I knew better, I thought that health had rules to it, that when you got ill, you would be handed a leaflet that laid out what you could expect, from your condition. The truth is, there are no rules, no leaflets, nothing that helps you through any of it. Worse than that, it can take you years to work that out. Your health changes, something happens that you didn’t expect, and you don’t have the slightest idea what to do next. Doctors don’t help, they’re as much use as a short piece of wet rope. Yes, if you have a dramatic flare then we need them to prescribe steroids, but other than that, they can do nothing for us. So you start working it out for yourself as you have no other option. To their faces, you use the terminology they do, to ourselves we name things with words that feel are right. So if some symptoms come and go, a bit worse this time than the last, sticks around for a while, then fades away, well in my world they’re phasic, not “flares”, nor progression. When they step up and don’t go away, don’t get any better despite doing all the things you can think of, well there is no choice left, other than to accept it as progression.

It’s been weeks, closing on months, since I last felt anything close to what I once called normal. There’s another word, “normal”, there isn’t anything to replace it, so it’s there. “Normal”, it’s something that also changes, it’s never the same for more than a day, so how can it be “normal” Well it’s another way of saying we have accepted where we are, as how we will be forever. It doesn’t mean that we like it, it just means that we have accepted it. After weeks of writing about how things are wrong, how I don’t feel as I should, well today, I’ve accepted that this is my new “normal” thanks to progression. This isn’t phasic as I hoped it was, it has done nothing but get worse and stay worse. If progression needs a definition, well that’s it.

I find it hard now to believe that I was ever like other people. That I once went out and about. That I could once run, climb and dance, all with passion and joy. Which is actually one of the cruelties of this illness, it’s taken out someone who lived life with passion. Who never once had a car, avoided buses and trains and took pleasure in just walking everywhere. I look now at a world filled with people who do everything to avoid using their legs, now I can’t, where is the fairness in that? Here I am stuck using a wheelchair just to manage to get from one side of a room to another, yet, this is my normal. I guess, “normal”, is what you make it, in whatever way you can. Mine now means feeling nauseous and tired without the energy to just stand up and fetch something. Constantly tired, able to sleep at the drop of a hat and with a body that knows more pain, that it does silence. Every change that I go through, I name them all phasic, in the hope that they will go away. If I’m honest, it ceased having any hope of it being such several weeks ago, I just kept hoping. Hope is something you hold onto tightly and grip gets even stronger the longer you are ill. Without it, what do you have?

The good thing about declaring the new “normal”, is it means I can now let go of the old. Just as I forgot about running as an option, I can now let go of the possibility of ever being truly awake and I can look forwards from now. That’s why accepting is good, it’s not about giving up, it’s about moving forwards and stopping that terrible yearning for the past. If you spend your life looking back, you’re never going to move anywhere. So here we are, at a new dawn and life is good.

 

Please read my blog from 2 years ago today – 04/03/2014 – Just deal with it

I seem to be slightly closer to be on track today which is odd if you consider just how little has actually changed since yesterday. Out of all the things that could possibly drive me mad at any time, this hesitation, or stuttering fingers is really driving me nuts! I hadn’t realised just how much I actually express myself by typing and just how much time I really do spend every day communicating without saying a single word. I suppose I shouldn’t be surprised to find that my vocal stutters have relocated themselves into my fingers as thier power to anger me through talking had become somewhat limited once I became housebound. Joking aside, my dexterity hasn’t really change that much in the last few years, yes I drop small fiddle things, spend more time than most searching around the kitchen floor for that coke bottle cap, or tablet……

Week five: It’s not over

If there is one truth that can’t be escaped, it is the fact that there are as many right ways to live, as there are people on this planet. We all like to think that we have got it right, that we are the ones who can show other the way to be happy, but the truth is, none of us can. When it comes down to it, we are the only people who have both the right, and the understanding required, to know what is right for us. So why is it, that every day millions scour magazines, websites and TV channels, for that ultimate piece of wisdom, that one must have item, or that perfect person, who will make our lives better, if not forever, at least for today? If we were content in our lives, we wouldn’t keep searching in the hope that there is something out there, that we just have to find, and our lives will be perfect. It’s a fact that one group of people have made a living out of for the last century, the marketing men, they know our self-doubt and they play on it constantly. The more that they exploit that discontent, the more they make it grow, creating the perfect circle that keeps them in work. They, though, are the last people that we should listen to because if we are discontent with our lives, it is only us that can fix it and that takes a huge amount of trust.

When I was first diagnosed with PRMS, I went through all that normal things that I believe is all part of accepting what is happening to us. It is without a doubt, one of the hardest thing to go through. Our entire lives have just had the rug pulled out from under us, and rather than landing on the floor, we are like “Alice in Wonderland”, falling and falling and falling, with no idea when or where the bottom of that hole is. We grab at all those roots sticking out of the sides, at all the objects that we pass, the occasional one, appears to slow us for a while. All too often, they fail and we go on free falling and searching. Eventually, as time passes, we learn enough to slow our speed down to more of a float than a fall, but floating in space, isn’t an answer to the millions of questions no one has the answers to. I believe it is at that point that our future is really written, we either accept totally blindly, that there are no answers, that this is our life and we had better get on with it and live, or we fall apart. Blind trust isn’t something we as humans are trained to do, in fact, we are brought up to do the total opposite. We’re taught that everything has to have an answer, that all illness has a cure and that doctors are gods. That if we just demand enough, complain loudly enough, research and demand again, we will get better. They lied to us. But if you can accept that, and then take that leap of faith, to put your trust in nothing, and no one greater than yourself, well, you’re still not going to get better, but you can have a good life and you can stop both floating around and better still, falling.

It goes back to my opening lines, ” there are as many right ways to live, as there are people on this planet” and that isn’t changed by health. Actually, I think our chronic health, makes it even more true. Like it or not, society sees us as a subsection, not quite like them, but regardless of that, we should still fit into the plug hole created for us. You can hit yourself over the head with a mallet forever, once you have a chronic illness, you will never fit, ever, again. Society, quite wrongly, puts health quite far down on the list of important things required to be seen as a successful human. We judge ourselves by our looks, our brains, our personalities, our earning abilities, our social acceptance, social standing and our likeability, not all in that order, but all more important than health. Wrong, because without health, all of those fall apart. As we were falling all those things bit by bit were being blown away be the updraft, we may not have seen it at first, but eventually, we can’t help but have to. Keep falling and you fall into another endless pit, the one of depression, make that leap of faith and decide to trust yourself, to build your own life, your own standards, and your own understanding of self, and you stand a chance of living well, despite it all.

For me, one of the things I had to get through to my pig-headed self was that there was nothing, I can control nothing and there were no battles that I can win. I didn’t possess the power to change anything, it was all going to happen just the way it wanted, regardless of what I did. Friends left, work left, money left, health left, mobility left, looks faded, weight went on and the outside door, closed forever. I couldn’t change a single thing, or control even a single hair on my own head. The only thing I could do was live and that had to be my starting point. Not much to build from you might think, but it was the only thing I had, that hadn’t left, that I had true control over. We all have that ultimate power, to decide if we live or die, it’s the only thing, that once you have had what feels like everything stripped away from you, that is left and is ultimately the only thing we ever have true control over. It took me three years of being housebound, to realise that I had to stop looking outwards for the answers and I had to start looking inwards. If we are going to be happy, if we are going to have a life that means something to us first and other secondly, then inside is where we all have to look. It’s not always pleasant and it’s often almost impossible when your fighting with a body that does what it wants whenever it feels like it, but inside us, is where we find the true us, our true desires, needs, wants and goals.

Recently, I had forgotten all of that, I had let myself be beguiled by all those baubles of life that none of us really need, the things other think we want. I had let myself question what was happening to me and where the answers were to making it all go away. It couldn’t be made to go away 14 years ago when it was diagnosed, it isn’t going to be made to go away now. I can’t get back those who are gone, or the things that I lost. After 5 years of stability, I was falling again and life was out of control. I can see clearly now what through everything out of kilter, why I wanted so badly to make things change and it was all my own fault. I stupidly thought that accepting the loss of being able to walk was as simple as sitting down on my wheelchair. I didn’t think that I had to do anything else other than that, after all, I had done it before. Because I didn’t take the time to go through all those steps of loss, and just leapfrog over them all, what I did was open a huge gash and blood was flowing out in all directions. My attempts to patch it were feeble and ineffectual, I was in denial of the fact I was grieving. When you grieve, you don’t just grieve for what you have just lost, you also open all the grief you have ever felt, in the past.

Every step that our health takes, even when like this one, we know it is written there in our future just waiting for us, still hurts. I thought I had learnt that lesson, that I was passed all that stupid stiff upper lip rubbish. It has its place in front of other, but to ourselves, never. I need to look inside, to myself and to live my life, not the lives of others. I have to accept again and to rebuild around what has happened. Just being able to make my way around the house without bumping into things, is learnt skill, it’s not acceptance. Enjoying being able to do things for me again is a bauble, not acceptance. Finding pleasure in just sitting quietly enjoying a meal I made and a break from sitting here at my PC, is emotion, not acceptance. There is no comparison, nothing that can even bring them into the same sentence. My legs are never going to carry me more than a few steps ever again, fact. Easy to say, even easier to type, hard, really hard to accept. But I have to and I have to do it fully, without brushing any of it under the carpet and hope that it will somehow stay there.

Please read my blog from 2 years ago today – 14/10/2013 – The truth of what life requires

Another week of who knows what? I know that logic says that if you are housebound and ill that everyday should really be like all the rest, but it never really is. I thought when I was no longer working that I would find it impossible to…..

Peaceful acceptance

I don’t know if there is a sleep specialist reading this or if any of you have the answer to something that I am find more than just a little ODD. This isn’t the first time that this has happened but as it is the second night in a row that I have woke around 5 am in pain and in the same strange position I thought I would throw the question out there. I have woken with my head on the pillow and my shoulders parallel to the pillow, my body is in line until I get to my waist where it sharply twists so that I have both legs out of the bed and both of my feet on the floor. In the last few months I have occasionally woken with one foot on the floor so the second one there as well is another move on, why any of my feet should be there I have no idea at all. I woke both yesterday and today due to the pain it was causing me so I must have been like that for a while. There is no sign that I have actually been sleep walking or anything like that, I thought when I had one foot out that I may have done that by accident as my foot or leg was hurting, so a little sense there but both? As I said ODD. I really hope that I am not about to start sleep walking as I am dangerous enough walking around when I am awake, I can’t imagine the trouble I would be able to get myself in to like that. LOL

Yesterday was really a very average day, without any great traumas which is nice. It’s strange how life turns itself upside down when it comes to just getting through the waking hours. I suppose like most people the days I remember and enjoyed where the days when something special happened or something just a little different, now the days I remember and look forward to are the average ones. The days without extra pain or accidents, or anything of that nature, just to be able to wake up, get up, coast through what needs to be done and go to bed, are wonderful. I realised that something else has changed dramatically as well, I no longer have days where I wonder what to do with my time. Clearly I used to work and like everyone else I had housework and thing to do, so that took the bulk of my time but I did have points where I wasn’t bored just trying to decide what I wanted to do. That never happens now. Part I am sure is because I have less hours in my day, but mainly it is I believe because I now appreciate all the time I have, every minute of it.

Your view changes once you know that your life isn’t going to go on for ever. We all know that one day we will die, but once you have an illness that will ultimately be the end of you and sooner than nature gives all humans, things change. I don’t know how many years I have, but I know they are less than I did have. Knowing that makes you look at relationship, daily activities and so much more in a different light, you also make decisions about what is worth you time and what isn’t, as the time you have is capped. It isn’t something that you sit down and work out on a spreadsheet, it is something that just changes without your permission. One of the strangest things that changes as well, is my acceptance of my own end, I don’t fear it at all and I have an amazing calmness about the whole subject. I don’t know why or where from, but I feel really peaceful and accepting in what will happen. Even knowing that from now to then, my health will go downhill and I will feel worse and worse, with more an more pain doesn’t scare me. It is just the way it is and it is just what will happen, I have no choice or way of changing it. I guess I wish this is one of those feelings that I could bottle and pass on to everyone else in the world. Once you are at peace with your life and you appreciate the time you have and everything that you can do, there is a happiness that settles inside you and life becomes a very different and enjoyable prospect. It removes so many worries and so many problems that it is hard for me to put in to words, it really is something you have to feel to totally accept and understand. I just wish I could share it.