The best thing ever?

Sometimes, when I read back the words I have written in the past, both recent and distant, I often find myself surprised at just exactly, what I have managed to put into words. I can only guess that it is like everything else about myself, I have little faith in my ability, in this case, the ability to get across the true feelings and emotions, of what it means to be ill. Emotions have never been my strong point, yes, I feel them, just as you do, but I haven’t always been the best at showing them, and absolutly rubbish, when it comes to talking about them. What shocks me, is somehow I can put them into words, words that hold their power, even long after I’ve forgotten ever writing them. I’m not saying that I am a great writer, no, not even I can that be conceited, something all of us suffer from at times, it’s more along the lines that I am shocked at my ability to even make myself cry, both out of pleasure and from all too often, almost visible pain. It was in childhood that I learned to hide the extremes of emotion, then slowly, also the everyday ones. Emotions weren’t to be seen, only blind obedience, contrition and feigned happiness when tears felt more appropriate. I used to spend hours in front of my mirror working on that perfectly blank and serene expression, which somehow always failed when it was most needed. By adulthood, I had my emotions so well under control, that even I thought myself, cold at times. I suppose my habit of writing at speed and without great thought, just letting the words flow, means I tap into the true me, the one that was always there. In a way, I think it could be a good exercise for anyone to try. Trust me, the real you will appear right there before your own eyes, but remember, you can’t plan a single word of it, just the first line of each paraghraph, then let your mind run.

It is one of those wonderfully warped things about my illness, that tears now accompany almost anything. Let my brain sense even the tiniest speck of stress, and my eyes start to leak in a way that is impossible to stop or conceal. Chronic illness is probably one of the most warped things that can happen to anyone. Not even the cruelest mind in existence, could have come up with a better way of stripping away every learned behaviour, ever speck of self-control, to produce a more intense lesson in self. We all like to think that we know ourselves, you don’t, unless, you too are living with one or more of these monsters. They make you expose so many differing aspects of our personality, from our strengths to our greatest weaknesses, that self discovery is impossible to avoid. I never thought of myself as strong. I had had too many things happen to me, where others had taken control of me, when in my book, a strong person would have stopped them, and escaped their influence, that clearly, I wasn’t strong. So much had happened to me in the first half of my life, that proved to me, that everything they told me I was, had to be right. That is the problem with controlling people, they slowly chip away at you, diminishing every aspect of you, and you are left, a shadow of yourself, and so scared of that shadow, you even try to hide that. Like many, I thought that chronic illness would be the same. The images we are fed of frail people, no longer in control of their own lives, seemed all too familiar to me. It seemed so ironic, that I had spent so many years rebuilding myself, only for my health to turn on me, and I was once more facing domination.

I can’t find, or explain, what happened inside of me. I had spent so many years defending myself, and so many more putting right all the wrongs, that something, somewhere took the decision, that this time, it wasn’t going to be the victim. The other day on twitter, I replied to a tweet by saying something along the lines of, “PRMS wasn’t the end, in fact, it was the beginning of me”. I say along the lines of, as I can’t remember the exact words, but I remember the earth cracking truth I felt inside, as I read it back, before I clicked send. As I have said many times, words tumble off the ends of my fingers, direct from some odd point in my brain, that I don’t control. They just appear. The basic me, has always been there, I’m not saying that I became a totally new person, but that tweet was totally true. For the first time in my life, I was facing something that wasn’t going to deceitfully take over my life, this time, I was forewarned. Everything that I had inside me, all that rebuilding, starting over and over, had given me a grounding, for what was to be my future. But the final difference, took time to appear, and that, was this. All those things that I wasn’t “allowed” to let out, could pour out of me, clearly, without being shrouded in any way. Writing was my final salvation, my opertunity to learn to truly be me.

What you read here, isn’t just a description of my life, or just my health, what you read here, is me. The total me, the me, that I might even go as far, as saying, I don’t think even Adam is always aware of, well not until he too, reads it. Probably even more surprisingly, it’s also a me, that I’m not always aware of either. I’m not cold, I never have been, I just learned to appear that way. I’ve always cared passionately about everything and everyone. In an odd way, I am actually glad that I became ill, because, it has taught me so much about myself, about my life, my strengths, and weaknesses, and most weren’t what I thought. Best of all, there all here to remind me, whenever I forget, life long training doesn’t disappear over night. Being ill, could be one of the most positive things that could have happened to me, as a person. It’s a truly hard way to learn, but I’m glad that I have had the oppertunity to, as otherwise, I might have missed it all.


Please read my blog from 2 years ago today – 03/01/2014 – Step by step

And normality returns, well I like to think it does. With Adam now back at work and the house no longer filled with foods that no matter how tempting they are, really aren’t good for anyone, there is a feeling of……

Behind the times

Yesterday turned out to be a day filled with frustrations and more. It wasn’t really anything to do with my physical health, more as I have said in the last couple of days the total inability of my brain to hold onto what I was supposed to be doing. There wasn’t one single thing done yesterday when it should have been, including all my meals, going for my nap and even pouring out my nightly G&T. Despite the fact that getting that extra hours sleep is making an improvement in how I feel, it is screwing up everything else. Without a doubt, somehow having last weekend and yesterday, proved that sleeping longer at night does have a beneficial effect. I have been wondering for a long time if it would and if there was a way of achieving it without making a mess of everything else. Right now is that opportunity, right now we have three days in a row where getting up later, doesn’t mean Adam will be late for work. But it my brain just doesn’t seem to be able to cope with it.

I thought that with having a more flexible routine, that I would be able to deal with it. But because I am up an hour later, I forget to have my breakfast at the right time, I had it when I hit the point in my routine where it belonged, an hour later. From then on it was all set to go wrong, I wasn’t looking for lunch at lunch time, no, I was an hour late and so it went for the whole day. The only thing that happened smack bang on time was having my evening meds, as Adam was here to make sure it did. Each time I noted that I had missed something, of course, I wound myself up about it and the frustration with myself just kept growing. It is one of those things that you don’t have control over and with each new missed event, it just grew and grew. By the time I hit 7:30 and I found myself still drinking coke, well my frustration had hit explosion point and had changed into anger. Adam could see how disturbed I was over everything being so far out of my normality and offered to reset the alarm. I was tempted but said no. The days where I have been up later have been so clearly so much better that to miss that, seems about as stupid as not taking my pain killers.

This morning I was disturbed just before 7 am, which meant I didn’t go back into a proper sleep. Waking anytime after 6 am can do that to me. The best I can hope for is to dose from then on. The result today was that I woke again at 7:50 needing the loo and just got up, but I am without a doubt that if I hadn’t been distributed, I would have slept on. Getting-up then meant jumping back to my normal timings was really easy. Today though will have to go down as a missed opportunity. I haven’t given up, I know that it is the right choice for me, but if I can’t get this damned frustration under control, I will be undoing all of it’s benefits. Everything is designed to make my world calm and steady all of the time. Stress, even if it comes just from frustration, isn’t a good thing for anyone with my range of conditions. Both Adam and I have put so much work into achieving a world that supports me, keeps me cocooned and safe all the time. I know that this small change isn’t undoing that, but it is damaging it.

It is so hard to make changes, even when you know they are changes for the best. Yesterday was the perfect example, no matter how much better I felt at the start, it was undone as everything else took over. If it was every day of the week, it wouldn’t be a problem, I would fix it slowly and live would settle. I am asking my brain to work on two different routines and to accept both. It may be just one ask too much, but I have to at least give it a good try. It is always tempting to give in too soon, to find something that isn’t working and to ditch it. Just like the Psyllium, no, I haven’t ditched it, I am still eating my way through it every second day. I can’t say yet if this is a system that will work for me, it’s too soon. What I can say, is that by not taking it daily, I have broken that painful bloating that it was causing. That may be under control, but that doesn’t mean that the pain has gone, far from it. I still find myself in pain every night, just as badly as ever and my constipation hasn’t changed, but I now accepting the fact that it is now part of my life that I can’t change.

There is a time when every pain has to be accepted, a point when all and any hope that it can be removed or managed has to be forgotten. The first half of this year was spent wrapped up in it, monitoring it all the time and having my hopes tightly attached on getting rid of it. There is a point though that appears that says this is it, you can’t do anything that will change it, so work on accepting it, that is where I am now. Part of me still wants to demand that they medically do something about it, but they have said quite clearly that medically, there is nothing they can do. There is no point me sitting here day in and day out letting it pull me down. Getting angry at even extreme pain that takes my breath away or leaves me in tears, doesn’t make it better, it makes it worse. Just as I have done over and over with all the pain that I now live with, I have to put it where it belongs, as part of my life, not the focus of it. That I suppose is why I have made a point of not writing about it in the last couple of weeks. Writing about it every day was making it more and more my focus, rather than just there. Maybe tomorrow I will write more about that process, for today that is all.

It’s time to move on before I land up behind and wading my way through frustrating arguments with myself. They don’t achieve anything either.

Judgement day 1

…….but how many do I allow for. This is it, I am free of all extra drugs and it is now up to my body to do the work that they have been helping with. I have always hated this point in any illness, it feels as though someone has come along and whipped everything away just for a laugh. Having spent unknowingly the majority of my life with an autoimmune system that is playing by its own rules, all bugs have been hit or miss. I have lost count how many second rounds of antibiotics I have landed up having to take and the colour of what I am coughing up doesn’t fill me with inspiration. On the good side, I managed to go from around 10 pm last night right through until 6:30 this morning without coughing. Even Adam said that I was amazingly silent, no wheezing nothing. Since I woke unable to take a silent breath, I haven’t stopped coughing and the flow is impressive, plus odd, to say the least. All I can do is wait and see and if things show the slightest sign of closing in again, acting straight away.

Everything about today is about getting myself and my life back to a more normal pace and something closer to my routine. I say closer, as I am still in two minds about whether or not it needs changing. I know that my struggling with it could be nothing more than the exacerbation just slowly taking hold, but I can’t be sure. The one thing that I don’t want to find is myself wallowing under a pile of things that feel like they are about to bury me. This last week I stripped everything down to a minimum, enough to let people out there know that I was still alive, but little enough not to tax myself too much. My intention is to step things back up slowly and to allow within it how I feel each day, rather than the rigid this is what I have to do everyday. I know that it is the only way I have worked throughout my life, a constant rolling “To Do” list, but maybe it’s time to make it more a maybe list. It is one of the hardest things to get used to once your health is breaking down. None of us ever want to believe that we are doing too much, we are always capable of more. Having to let go of things, is hard. It doesn’t even change with the size of the task. I doesn’t matter whether it is stopping working or doing the housework or doing twenty minutes more on twitter, they all hurt. Every tiny step downwards is just that, a step that says, you are closer to death than you want to think about.

I realised a while ago that I had to change more than just what I was doing, there was a much bigger task, how I thought about things. How can anyone take two days to file their fingernails? Both hands on one day had somehow become too much and a task that if I look at it that way, just didn’t get done. Slowly those nails grew and grew until they were in danger of breaking, it was only when they did, that I did something about them. So incredibly silly as odd broken nails don’t make you feel good. I had to change how I saw that one task, I had to break it into pieces that let me cope with it and feel good about it, which isn’t that easy. I had to somehow accept that one hand on one day, the other the next, means I can achieve without feeling totally useless. Five nails filed over several hours, repeated for the second hand the next day. If I let myself think of it as pathetic, well that was just how I felt. By switching it around, achieving all the way, one nail at a time, I now have a task that doesn’t daunt me, scare me or even put me off doing it. I am not going to say that it is suddenly a total joy and I am proud of myself for getting it done, but “I” do it and that is the important bit. Even in the last week when Adam has never truly been far from me at any waking minute when my independence was possible, it was important.

Every time that I have gone through the process or reassessing and readjusting to my abilities, it is tough. The biggest thing I have learned from all of them is that feeling of independence and achievement have to be met, without them, it doesn’t work. I know without any doubt that these changes in my life are a long way from over. This first true exacerbation has shown me what my body has lain out for me in the future, it’s one of those hard things to get your head around that that wasn’t it, it’s going to happen and happen again. Life has taught me that when things happen again, they are inclined to also get worse, which in itself is scary. To survive them, I will need an even more flexible routine but still one that I can recognise as one. I never realised when I was diagnosed with any of my conditions, just how much of my future was going to be spent playing psychological games with myself. I am discovering more and more that those games are essential, how I see and feel about things is far more important than the pain or even the lack of oxygen. Anyone can take a tablet or hitch themselves up to an oxygen cylinder. Feeling bad about it, won’t have anything like the benefits that can be found when you can convince yourself it’s where you want not just need to be. I spend every day throwing tablets down my throat, I used to hate every single one of them. It isn’t just a case of getting used to taking them or the relief that they bring, there is now a positive feeling within me rather than the reluctance and even hatred that I felt for them at first. That one I take no credit for, it was something my brain did for me, but it is the same feeling that I can now reproduce for myself, in time, for all the hurdles jumped over or waiting to trip me up.

The most stupid thing I have ever had said to me by the majority of people is “You have to stay positive”. You can not make yourself be positive, if you don’t feel it, you can’t create it. Positive is a collection of things that come together, but we have to create all the elements ourselves. Control, achievement, independence and ability, are the major ones, with loads of tiny specks of others around them. Work on each element as its importance appears and that positive feeling about where you are in life does follow, it’s just a lot of work, but what else do I actually have left to do these days, other than make myself feel better.

Read my blog from 2 years ago today – 24/06/13 – Settled and happy again

I have to say that it has been an unexpected weekend, somehow all of this is bringing us closer, the opposite that I thought might happen as I know Adam and I are at other ends of the spectrum. Yet there is a feeling in each kiss and each word that says ‘I love you’ without the words being said, and when spoken the is a new depth that hasn’t been……

The right thing

We are up early this morning and all because of a misunderstanding in a conversation we had yesterday. Adam had noted that he managed to deal better with his day when he was up that half hour earlier, as we forgot to reset the alarm after the hospital visit. I thoroughly understood, as I used to be the same, if I was up with plenty of time to potter around getting dressed, doing my makeup and even some housework, well my day went well. Yesterday’s mistake appeared when I said “Well set your alarm for 7 am then”, he thought that I meant the main alarm in the bedroom. It was just his mobile I was thinking about, so the alarm sounded and up I got, not too happily at first. I think he missed the fact that if I were to be up every morning at 7am, I would have to go to bed at 8:30pm every night, something I am not going to do. I don’t hear his mobile thanks to my earplugs, so he can get up when that sounds and I can sleep on until 7:30. After all, I used to be up every morning at 4:00 am on work days and did so without waking him for years. So I don’t see why it can’t work the other way round. It has been one of the things I have been wondering about for a long time, what happens when my ten and a half hours sleep at night stops being enough. It’s bad enough chopping my evening in half as I do at the moment, but the whole idea of going to bed even earlier, well that just feels so wrong. For some reason, Adam has always required a rather massive kick up the backside to make sure he is up in the morning. I used phone him from the office, acting as his third alarm to ensure he was up for his work. Getting up at 7:30 doesn’t just suit me, it means we both know he is up and on the move. But I know the day will come that I will need more sleep, just as it has crept up from just five hours a night to where it is now, it will increase again. What happens then, as Adam really needs to keep working, and we can’t afford for him to lose the job he has. It’s odd how the things that are important to us when our health takes over. I, of course, didn’t want Adam to lose his job even when I was working, but it wasn’t half as important as now and not just for the money. His being out at work means so much more now as he needs to be around other people, and we do need that break from each other as well. We both know the time will come when my health demands that his role as a carer will step up, for now that chance for him to be part of the outside world is majorly important.

I suspect if we all sat and thought about it, there isn’t a single thing in our lives even our values, which haven’t been changed by our health, from the tiny to the major. It sometimes feels as though it has taken over everything, and I do mean everything. Just looking at the paragraph above, there is a list of things there that have an entirely different importance applied to them now than they did eight years ago. I suspect that would probably be the same for almost every paragraph that I have ever written in this blog, change after change after change. Things that used to be important, now not valued at all and things that I didn’t even notice before are now so important that if they go wrong it feels like the end of the world. I just thought of one small but equally major thing that is a perfect example. I drink nothing but caffeine free diet coke. Should for some odd reason this isn’t delivered, or we run out, you wouldn’t believe how wound up and how personally I take it. I know that my emotional center is out of kilter, and part of that feeling is down to that, but that is just a part. I honestly now place a higher value on a bottle of coke than I do on the rest of the food, not having it is like someone cutting my throat. The whole idea of having to drink anything else, well it is almost unbearable, a few years ago, I wouldn’t have batted an eyelash. As I said, I know part of that is down to the damage to the lesions on my brain, but I think there is something far stronger behind the value I apply to different things these days.

I first spotted it when I was first unable to manage to eat large quantities of foods a few years ago. At that point as I was still working in the companies offices, grazing as I do now, wasn’t an option. So I had small high protein and calorie shakes that I could sip, but I only liked a few flavours and utterly hated the orange ones. Occasionally, the orange ones would be delivered, and I felt myself for the first time being upset by something that didn’t actually matter that much. It was something that I just couldn’t get my head around as I had never had that kind of petty reaction before, so I set about analysing it. I don’t remember how long it took, but I did find the reason; I believe it was because I for the first time had realised just how much of my life had already gone. I had only had my wheelchair for a short while and at first I saw it as an enormous boon to my life, that was until I discovered the reality of the outside world. A world designed by the able-bodied on a day when they switched off their brains, totally inaccessible. The ultimate truth of my illness was beginning to hit home; everything was slowly slipping away from me, and I had less and less. Everyone else still had full and active lives, they went out for dinner, clubbing, the movies and were free to go anywhere, but what did I have, orange protein shakes. The more my health was boxing me in, the more importance I was putting on the small things that I could do, or could have. Soon I was going to have even less and less so the little I had, had to be right. On the surface, I was more than aware that it made me sound and look like a petulant child, but was it really asking too much that what I had to eat was at least palatable. My values were becoming self-centered, and I didn’t like it at all. I by nature had never been self-centered, I was the person who thought of everyone else first, yet here I was becoming locked into looking inwards only.

It took a long time for me to understand what was behind it all, but the core reason what simple, I was feeling cheated. Something had stolen my life, and what I had left, well I deserved to have what I liked and what I wanted. At first it wasn’t a conscious decision but these days there is a large dose of choice thrown in there too. My brain had made a decision for me, and it was right, it just came out wrong. Having a hissy fit doesn’t help anyone, sometimes when you don’t have full control over your emotions those hissy fits appear when the truth is much simpler. My life is so much more intense now like and dislike aren’t strong enough words for anything. When every second counts, a second doing something I don’t like is like, spend hours doing something I once hated. If I am going to do something, well it has to be something I enjoy, having to do it out of requirement means nothing to me. Take having a shower, I know everyone has to wash. But the water causes me pain, and the whole process is exhausting, is it any surprise that my brain ditches even the notion of doing such a thing? Food, drink, showers, sleeping, activities and sleep, all have a value they never had before.

I like everyone else who is chronically ill, just didn’t realise the actual impact. I know I have said before that I had these steps I thought I would go through. From able-bodied to walking stick, from walking stick to a wheelchair user, from wheelchair to housebound and housebound to bedbound. That is how I think most would see their course of progression, but we totally miss out the smaller things, which are in truth, just as big, like food or clothing. I have just sat here for a few moments, desperately trying to find something in my life that my PRMS hasn’t changed. I can’t think of a single one, none of us expects that when diagnosed and I would happily bet money on that one. I know I never foresaw a future where I would have difficulty just eating what I would expect a five-year-old to, or that sex would be just a distant memory. But that is just the way it is, I can’t change that, I could either drive myself insane worrying about it or trying to change it back or I can accept it. I know all lives change as time passes, but there is an enormous difference between going with the flow of society and finding yourself with no choice but to do as your body tells you. It’s easy to see why some compare it to being in jail, but there is one huge difference, most criminals get probation, we’re stuck here forever. Sorry, I couldn’t resist saying that it honestly isn’t how I see it at all.

Values and life might change, but one thing doesn’t, right and wrong. I can’t help my surface reaction, any more than I can control my inner feelings. But I still know what is right, and that’s the greatest value anything can have and not just what is right for me.

Read my blog from 2 years ago today – 24/05/13 – Word after word

I have to start this morning with a bit of great news, Jon, Teressa’s husband had been given his residency visa, so he can now stay here forever! I am so glad that all those legal processes are known over, and they can get on with their lives as any couple should be allowed to do. With his visa now confirmed he can now……..