What is going on?

Posted on October 9, 2015 by livinginalimitedword

I’m tired this morning. That feeling of heaviness that makes your entire body just want to collapse and give up. It’s a tired that leeches all warmth, even when you sit in front of the fire to eat your breakfast, you’re still cold. Ten minutes of direct heat and the result, a warm front and a freezing back with nothing in between, and within seconds of moving, freezing again throughout. I didn’t sleep well last night. 4 am, when I woke desperate for a pee and feeling a pain I know all too well, that one that says somewhere in the next 12 hours, I will be moving my bowels. Why do they have to go through such an aggressive announcement period? Quite honestly, I don’t need more than a few minutes notice, just like everyone else in the world, but that would be too easy for my body. No, it has to ruin the one thing I need the most, sleep. Three and a half hours of lying in bed with only fitful sleep is enough to bring me right down the next day. Right now, despite the fact I crashed my way through the house in a desperate dash to get to the loo, once more proving that filing the top off my scab, has made it safe. Or the fact that I have had a meal and done all I can to make life right, all I want is more sleep, hours and hours of sleep. I may not run my life on a tight minute by minute routine any longer, but that doesn’t mean I can throw my day out the window, and just head back to bed. If I did, then the whole day will be a nightmare, followed by a night that wouldn’t be much better. So I do the sensible thing, I put up with the not so nice, to avoid the totally horrid.

This is the draining bit, the part of all chronic illness, that gives it, its bad name. Those days that often turn into weeks of feeling no more than half alive. I don’t write about them that much, as they are the drudgery of illness. Those parts, that none of us dwells on, as if we did, we would see no point to any of it. We brush it to one side and look for the good, even finding it and bringing out a smile for those around us. But inside, deep inside where it really matters, we are drained. To me, it is where life gets scary. It would be too easy to give in and to climb into bed and hide, in the hope that it will pass. No one out there, not even Adam, would blame me and that is even more scary. The world would allow me to wallow, in the mistaken belief that my health had reached a point where I had to stop and rest. The truth would be, that I was taking advantage of a situation and by doing so, I know that I would open myself up to feeling worse and worse. I don’t believe in this concept of fighting our health, but I do believe in not just giving in to it. Some while say, that it is a very fine line between the two, or that I am splitting hairs when I separate them, but it is an important difference. Fighting to me, implies an active aggressive act, something that I don’t have the slightest belief works. Aggression is a pointless response to anything that is bigger, stronger and more aggressive than you will ever be. It makes far more sense to stand your ground, work around it, with it and at times, even give in to it. You don’t beat a bully by becoming one yourself, any more than lying down and letting them beat the living daylights out of you, will stop them from coming back and doing it again. My body got the upper hand last night, leaving me feeling like death warmed up, but that doesn’t mean it has won, I’m still standing and I don’t intend to lie down.

Sitting feeling like a zombie isn’t a good idea either. For me, the only way that I have found that works and gets me through days like this is to keep going. It’s counter-intuitive, your tired, but you push yourself to do everything that you normally do. Even listing extra jobs, ones that don’t have to be done today, they could be put off, but by adding them to your to-do list, your plays the phycological game that illness really is. It is a constant case of outwitting it, rather than outmaneuvering it. By making life as close to normal as ever, there is just a chance, that you can jump your way out of the pit you are sitting in. I probably won’t have my shower this afternoon, but by telling myself that I will, well it means I have to keep moving, just to make the space required. If I slow down now, allow myself to just sit and stare at everything around me, or even just the screen, it won’t happen. I could be that zombie that wants to take over, I could sit here and type a few words here and there, eventually making my way to the end. Or I can kick myself up the backside and I can push those words to appear and my fingers to run, not dawdle. I usually land up somewhere in the middle, but that better than landing up still staring at my unfinished post an hour from now.

It is getting harder as time goes on, to find that inner strength to push myself. As I said the other day, my routine has been trimmed and trimmed and trimmed again. As there is a difference between the odd bad day, and a constant draining of life that doesn’t refill. You can’t push forever, that just doesn’t work any more than fighting does. Recognising which is which is hard. I found it almost impossible at first, and I probably did push for too long on occasion, but I did one thing right, I learned. Just as I told the MS nurse when he was here the other day, I know the point were outside help isn’t far away, but it’s not here yet. Neither is the point where I once more have to adjust my life again, but I have recognised from the last week, that I may need to start thinking about it. My body is screaming at me more and more that it just doesn’t want to play my games and the ones my illness is offering to it, seem like far more fun. Oddly, it is lunchtime that has reinforced those thoughts. The fact that I am not only content to stop and take a break, but happy doing it, is screaming at me. I knew that when I found myself within two weeks, mentioning it again. As you know my writing is more mental vomit, rather than thought out and considered facts. I sit here, turn the tap and brain flows out onto the page in front of me. Because I write that way, it all to often tells me things that I hadn’t either noticed or consciously considered. It threw it into my writing and has activated a train of thought that is clearly going somewhere.

I think I need more rest, not more sleep, but more rest. Time to just do, to be brainless and motionless. Time to relax. My body is forcing me to slow down in ways that I hadn’t expected. I thought that the next sign would be just like all the others, that I would go through a spell of being drained and washed out and never completing my day. That I would then like all the times before just trimming my routine and going on doing the same things as always. Suddenly, I have a need to do something different. To open up a new part to my daily life, but I don’t have the slightest idea what. I can’t spend an hour a day sitting in front of the TV eating. That would be disastrous in so many ways. My wheelchair has pushed me into making changes, ones that I wouldn’t have even considered without it. I am even finding an odd pleasure in my shorter breakfast break and my two 15 minute drug routines. I am at a loss as to what my body and mind are trying to tell me. I can’t stand just sitting around doing nothing, yet it seems to be what my body is responding to best and my brain, is trying to push me into doing. By being forced into doing things differently, I am finding physical and mental responses I never expected. I don’t have the slightest idea of where this is going, I guess time will tell.

Please read my blog from 2 years ago today – 09/10/2015 – Searching for the simple and normal

I made the single most horrible mistake the other day after my shower, I didn’t wrap the towel around myself tightly enough and I had the misfortune of being in front of the mirror when it fell away from my body, resulting in my…..

Restructuring

Posted on June 29, 2015 by livinginalimitedword

All I have done since I woke up is to cough. Yesterday evening even Adam broached the subject and asked if I thought it was getting worse again, in other words, he thinks it is. I had to be honest and tell him that I thought that it might be but I wasn’t sure if it was bad enough to require a call to the Doctor or if it was just to be expected. What I do know is that it is now centered on my left lung as the back and lower edge of that lung complains about every breath I take, but compare it to two weeks ago and I am as fit as a fiddle. I woke last night just before midnight coughing madly and Adam appeared once again with a measure of cough mixture that did the trick. Sleeping solidly from then until the alarm sounded was wonderful. I honestly don’t think I have had a full nights sleep since this whole thing began, which doesn’t make the rest of my life any easier. Today seems to be just like yesterday. At first I was coughing and finding nothing but the desire to cough again and again. Eventually, there was a small amount of the thick nasty gunk, then the water returned and it has been nothing but thin watery liquid ever since. Once again I can’t hear any crackle or wheeze, I just feel it in an intake of air and there it is suddenly drowning me before going quiet for another few minutes.

I have once again been doing something that in the last few years I have become an expert at, I have been putting things off. I now find myself with a list of things that I have no other choice but to do today. Top of that list is to have a shower. When I went for my nap yesterday, I fully intended to have my shower when I woke. The problem was that when I did wake, all I could smell was bleach. Adam had been going mad with it in the bathroom and even in the hallway I could feel the fumes cutting into my lungs, my shower wasn’t going to happen. I have shuffled it forwards four times now and, to be honest, I feel disgusting and the fact that the shopping will be here this afternoon, is the icing on the cake, I can’t let anyone see me looking like this. I also have to make two phone calls, first to the doctors as I have to be sure that the new calcium tablets are on the list of repeat medications. Then I have to phone the chemist to add them on to their list of drugs to order for me. I also need to have a word with them about my Amitriptyline. I have been taking it for years and although the brands change all the time, it has always tasted just like they all do. When my meds arrived last there was a different brand and I thought nothing of it until I had to take it. The only way I can describe it is to say that it tastes like soap. I am usually really good at taking anything, no matter how horrid the flavour, but this one has me stumped. It has got to the point that I now actually dread having to swallow the stuff. I find myself every night sitting on my perching stool in the kitchen just looking at the little cup with this stuff glaring back at me and wanting to do anything, other than have to swallow it. I have never asked a chemist to not send a certain brand of a drug before, so I don’t even know if they will be happy to change it back or not, but I have to try.

I can’t be sure what started it, or even when, but I have for some reason recently been plagued by heartburn. I don’t mean the normal stuff that we all know, no this is turbocharged. To me, heartburn was never more than a discomfort in the area of my sternum and a burning sensation in the back of my throat. I don’t remember it lasting more than maybe half an hour and then nothing for months. This is like someone has kicked me in the chest and the pain starts in line with my stomach and goes right around to my sides. I can feel it right up to my armpits and the only reason I know it’s heartburn is as within a minute or so, the normal heartburn symptoms appear and I have to drink something so that it doesn’t burn its way through my throat. I have lost count how many bouts I have had, but strangely I have found that even a few mouthfuls of coke have the desired effect on my throat, the rest of me takes time. I have never had heartburn that wakes me up in the middle of the night before, or appears even before I have had a chance to eat something in the morning. To me, this is really odd and the only thing that makes any sense is that when my diaphragm spasms are now tight enough to actually crush my stomach and forcing the bile upwards. I have for years now been on tablets that are there to protect my stomach from all the drugs that I take. I actually can’t remember having heartburn at all in all that time, then this started. I got Adam to buy me some suckable tablets that I have taken in the past, in the past they were wonderful, now they don’t seem to be doing much at all beyond what I can do just by drinking something.

I have been working on what my new routine should look like. The biggest change is that I have built into it rest points, times when I simply stop doing whatever I am and go and do something else. For example, I used to have my breakfast while I sat here working through my online stuff. Now, I stop. I am taking my tablet, eating breakfast as a focused on meal rather than something that is happening in the background and once finished, I sit and go through what I want to add into my schedule for recording on the TV. I have allowed for short breaks like that throughout the morning. My work schedule is now constructed in such a way, that once I have finished my blog, and the tweets about it, the rest can be done whenever I want throughout the rest of the day. I am hoping that by just breaking the ridged structure down and stopping from time to time, that I will not wear myself out quite so quickly or quite so totally. Having spent a couple of weeks being forced out of my old routine may just have been the best thing that could have happened. Even what I put out on Twitter has changed, not in content, but in quantity. I no longer have this tight list that I stuck to daily, now if I don’t feel like doing this or that, well I don’t.

All that might sound really trivial and as though it is something anyone would do when they don’t have the health of a flee, but to me it is really hard just now. I have it so well ingrained into me that life has to be a productive venture or it isn’t worth anything, that being able to stop and do nothing of worth, is hard. I know without a doubt that I have been pushing myself too hard, but it is incredibly difficult to fight against everything you have ever lived by. Just stopping for a few minutes is hard enough, bearing in mind that I don’t remember ever taking a lunch break in any job I have ever done, yes ciggy breaks, but eating, well that could be done when the work was finished. When you are having to literally reprogram your soul, it’s hard. This new freedom to do what I want is odd, as I can’t find things at the moment other than games to fill the time. Years ago I would have sat and done some kind of handicraft, but with my poor eyesight and crap dexterity, well embroidery, knitting and all the rest of them, just isn’t possible. I might have eventually accepted that I am not up to being superwomen any longer, but accepting that I can even be a shadow of her, well it is both hard and it hurts.

For me, it doesn’t matter what my health throws at me physically, how much pain, discomfort, fatigue and all the other things it finds to play with, it is the mental attitude changes that I find the hardest. It is beginning to feel as though those changes are having to be made more often than in the past. I knew this time would come, the point when want and ability were two totally different things and that want would be the one to suffer. Even though I knew it would happen, it doesn’t make it any easier to actually accept.

Read my blog from 2 years ago today – 29/06/13 – Thoughts

Yesterday and so far this morning have been filled with pain in my legs, it is one of those shift about and twist days, but with little real relief. I sometimes wonder how I have managed to gain wait as although I would class myself clearly as immobile I rarely ever actually manage to sit still for long. I know that I frequently joke about switching them for…..

Processing happiness

Posted on May 17, 2015 by livinginalimitedword

I managed to make a little space in my days over the last week and I used it to change a rebuild everything that I now do on Twitter. I have been wanting to for quite a while now as once again it had become just that bit too much for me, so although nothing has vanished, everything has been altered in some way, mainly reduced in their frequency which means fewer tweets and less work. When I look at what I do these days compared to what I started out doing, it was just madness the amount of tweets I once sent out, some might say it still is, but I did always set out to do it my way and that hasn’t changed. Over the next few days, I know without a doubt everyone will spot the changes and I just hope it still keeps everyone happy and not feeling as though I am ignoring them, as the mentions were the thing that needed the most pruning, something I started about a month ago. It’s really hard when your health forces you into making changes, changes that you know without a doubt you wouldn’t have made for any other reason, but that is what happens with conditions like mine, we have to keep changing to keep up with what it is doing to us.

It doesn’t matter whether we are ill or not, one of the things that it is impossible to do is to not look back on our lives. Those people who tell you to just forget about it, or not think about it are mad and personally, I actually believe that looking backwards is often the best way of working out not just who we were then, but who we are now. There are events in everyone’s lives that none of us will ever escape, those events that can’t be forgotten or brushed over, but no matter how painful we are always drawn back to by events, or just our mind’s still trying to make some kind of sense out of the whole things. I for one have found that the worst thing possible to do with those memories is to try and push them into some kind of box and keep them there, it doesn’t work, they always explode suddenly and you don’t just feel them, you relive them in probably a more painful fashion than you did originally. One of the biggest problems of our modern world is we don’t have space to think, there is always something to distracts us, gives us an excuse to pack those thoughts away. There is one thing that totally amazes me and that is people who say in bemusement that they can’t sleep because they can’t shut up their minds, why are they so surprised by that fact, if you don’t think about things, they will make you think once you have the peace and quiet to do so. To me it has been the most positive thing to have come out of being housebound, I have had time to think, time to go over all those things that were my life and to see them often in a very different light, that’s why I said “to see who you were”, I have learned more about me in the last 8 years, than I learned in the previous 45 and the biggest thing I have learned is if you have things pushing their way into your mind, it is because there is something wrong with the way you are remembering it and all too often, it is the viewpoint that’s wrong, the fact that I hadn’t looked at it from the viewpoint of the others involved.

A couple of years ago I wrote a post about forgiveness and how it was all too often ourself that we had to forgive, but not all memories are about apportioning blame, most are far more about emotions, our times of both happiness and sadness, if we are lucky exceptionally lucky the happiness memories out way all others. There is a myth in my head that says everyone in this world is happier than I am, I know it’s a myth because everything I read tells me that everyone out there feels ruffly about the same. It has taken me a long time to realise that being content is actually the reality of how most of us live, somewhere along the line we have this black and white view imprinted on us, that you are either happy or sad and there is no in between, but if there were the truth everyone would be walking around either in fits of tears or manically laughing, contentment is a very under appreciated state. When I found myself housebound I also found myself with the time to work through a million things, forgiveness was one of the first and it took a lot of soul-searching and lot of pain but I still stick to what I said in 2013, it is so worth doing, it changed me into a much more mellow person inside, I was no longer pulling myself apart and fighting my way through a life that had so many painful events in it that the past was a dangerous place. I was lucky in one way, that I had tried to do the same thing once before when I first moved to Glasgow, but I had held onto some who I was just not ready to forgive at that point, two years ago I at last forgave both my Father and the man who raped me when I was 12. It is hard to grow up when you are permanently being held back by so much hate and it holds you back emotionally as well, I had spent most of my adult years still acting like a child when I was confronted by anything I didn’t like, want to face or wanted to admit. My memories had been overshadowed by those spectators who I couldn’t put to rest and finally forgiving was a wonderful feeling. In the last few years, I have spent a lot of time going through my past, well as I said the other day, new memories are hard to make when every day is identical, but someone the other day said something that made me sit up and think again.

It was in response to one of my tweets, I can’t remember exactly which one now, I know I should have made a note of it, but I didn’t. They too had a chronic illness, but they were trying so hard to fight against it and to get back the life they had before their illness hit. It was something I never once tried, I had had so many different lives, that the whole idea of trying to get back any of them, well it didn’t make sense to me, I have started over so many times that starting over again seemed like the natural thing to do and I just did it. With every change that my health has imposed on me, I have readjusted and restarted what in many ways is another book in my growing life history. I have always taken with me what I had learned but not once trying to hold onto or return to what was now a closed book. It never once occurred to me that anyone else out there would be trying to do anything else, yet here I had it in front of me in black and white, someone who couldn’t move forward because all they were doing was looking back. Part of forgiving and letting go is the acceptance that holding onto something that can’t be changed is only ever destructive to ourselves. It doesn’t matter if it is a painful memory or a lifestyle that is now out of reach, if we can’t let go it will do only one thing and that is to eat away at us and make us unhappy and probably even depressed as time goes on. To be able to survive not just being chronically ill, but in my case housebound, I had to let go not just of my past but everything about your health as well. It is easy to get caught up in the blame game, to hold this doctor or that doctor responsible for us not being diagnosed sooner rather than when it eventually happened, to spend your life ripping everything to bits in search for the cause, the thing that you did wrong that meant you got ill, that will make your health worse. Draw a line under it, accept that it happened the way it did and this is where you are now, there is no way back, nothing you can change and if you ever want to be happy again, start a new life, this is day one, this is the start of something new and something exciting as the unknown always is.

It took me a while, like I suppose it does everyone to have that first day that I was happy, that first day where I didn’t want to punch the lights out of everyone who looked at me wrong or didn’t understand that I was ill or who had the misfortune to work in the medical profession, but it happened, I did smile because I wanted to not because others told me to. It took me even longer to realise that I didn’t have to be happy all the time to not be depressed the thing everyone seemed to be waiting for and that being content was far more important. Content is a wonderful thing, content means that you have stopped hating, stopped blaming and started living. It is the first step that follows acceptance, as until you do you will never be content. I have done it so many times in the last 14 years that I now do it without thinking about it or even planning it. Every time I know that things are just too much for me, I wipe the board clean and I rebuild taking into account what is too much, what is destroying my contentment. I don’t do it daily and I don’t do it lightly and yes I do still try to hold onto the things that I shouldn’t from time to time, but I never try to go back, as that is the perfect way to land up in a worse state than I was already in.

Just as I said a few days ago, asking yourself “am I happy” is something we all should be prepared to do every now and then, if your not well fix it, but just as important once your health has gone is to ask yourself “am I coping”, if your not well fix that as well. My answer came back no a while ago, but I always give myself a window to see if things improve, they didn’t so I made the changes to my day that I hope will bring back the answer that I need of yes. If any of us are going to live as well as we can for as long as we can, we have to adjust, not once, but probably more times than we ever care to think of, but once you have started again a few times, it just becomes part of your life, not a horrific process that scares the hell out of you, aim for contentment and enjoy the happiness that comes with it.

Read my blog from 2 years ago today – 17/05/13 – Interpretations of a good life

After my panic of the other night yesterday was a totally ordinary and straightforward day, thankfully! All those things that raise your pulse and all those chemicals that race around when your brain has lost control, maybe not only useful in the past and captured for profit by thrill seekers, but I now know that I would happily live my life without them, as I can only see one way of equaling all of them and that is not knowing…….

Living in a threat

Posted on March 29, 2015 by livinginalimitedword

Sometimes I just wish that I could feel like the old me, even if it were just for a couple of hours. Everyone sees me as being such a strong person, someone who is alway positive about life and doesn’t get pulled down by anything. Mainly they are the people who don’t really know me that well. I guess when you learned as a child to live behind a screen, to hold bravado as the strongest trait anyone can have, well you carry it on right the way through your life. Those who have read from the start, right the way through today, well they might know a little better that behind the person who writes as though the world is a wonderful place, is someone who is just as scared about every single step they take and where their life is going, just like every other single person on this planet. I used to think that there would be a point in life when all that fear would drop away and I would really have all the answers to all those things that as children we think adults understand and know, but are hiding from us for some warped reason, only to find the truth is they knew just as little as we did. Don’t get me wrong, I do have and always have had days when life was just good and the problems around it didn’t matter, not for a single second, and I still do have them, but then I remember and it all looks so different. I am as vulnerable to life’s ups and downs as everyone is and just like everyone else, if someone was to walk into this room right now, I would smile and disappear behind my screen again, simply because you can’t spend your life in a constant state of fear and those around us don’t need ours added to theirs. So today is a day when I can see all the bad things, all the things that I normally brush aside and smile at, not sweetly but in with a threat attached, it’s a day where I feel cold and in need of crawling back into bed, not to sleep, but just for that simple childhood comfort that bed brings with it.

So where did that all come from, well the first line, I just want to feel like the old me, the one who wasn’t ill all the time, the one who wasn’t in pain and didn’t spend their life trying to find something, anything that mades them feel better. I actually envy those who have relapse-remitting MS, because I do still remember the joy of being in remission when OK my body was still showing the signs that something was wrong, but at least I could still manage a normal life. To be honest, I don’t think there is anything crueler than a progressive condition as it takes your entire life and turns it into a threat. It’s a constant glimpse of your future with the knowledge that it is still just practicing for the main event and that once it has mastered everything, it will be so much worse. You can’t help looking backwards and trying to work out the exact path that each symptom has taken, trying to work out that angle you might see on a graph and then to extrapolate them off into some mad planet you can’t even imagine. There is a fact that I have noticed and that is there is never a point that you can say this can’t get worse. I have hit far too many points when I believed that I had reached the worst it could possibly ever go, just to find out it wasn’t the worst at all, there is still more it can do. Everyone has these scales in their head, scales for different sensations, for example, pain, we have a 1 to 10 and we know where on that scale the pain we are feeling is. Simple, no. The problem starts with a small fact, none of us are working on the exact same scale in the first place, they are all individual and dependent on our own life experiences. Life experiences change as time goes on, when your symptom reaches that number 10 on your scale, where do you go? All you can do is rebuild that scale, what was 10 has to move downwards as there always has to be space as we now know it can get worse, so does 10 become 9, 8 or even 7? Progression means it is going to get worse, so how bad can it get and which bit is the worst, what does our future really hold once you have gone past the worst you thought it could get and you know there is more to come?

Beside those scales that measure our symptoms, are the scales of time, how long is quick or even slow? No one can tell me how long any of the symptoms I have will take to get to their final position, will it be another year or 5 years before I can’t breath without help, will my bowels stand up to another 10 years of not working without dynamite attached, or will they give in totally and require intervention? PRMS is blind progression, blind because not even the experts can give me the slightest idea of what will happen when or even next and to live like this is really some kind of cruel joke, without any hope of laughter at the end. Is it any surprise that I hide behind screens, not just for others but for myself as not even I want to think about all of this all the time, but then there are days like this when it brakes through and my mind is filled with a million questions without one single answer. I used to get angry with the doctors for not diagnosing what was wrong with me when I first went to them in my 20’s begging them for some help, in an odd way, well I am now glad that they got it wrong as I at least had part of my life being totally blind to the truth. Years of being treated for all the wrong things actually were years when yes I was ill, but I convinced myself that I could survive as clearly I wasn’t any more ill than the next person, as if the doctors could find nothing, then maybe they were right and I was just a wimp and yes I know I have written about that before. Oddly, I heard someone else on TV the other day saying just the same thing and just like it was for me, she too was relieved to find out that she was really ill and that there were other out there who shared just what she was going through.

Without our screen, those places we can not so much hide but shield ourselves with, progressive illness wouldn’t just drive us into a deep depression, it would drive us totally mad. Yes, I do live in a fantasy world, where I tell myself that I am fine and that I can still deal with life and all it throws at me, but the only other option is one I don’t believe helps to even think about. That strength that everyone talks about, the ability to move forwards when what is ahead of us is unthinkable, could just as easily be seen as madness, as who on earth pushes onwards when what is ahead of them is a living hell? We do, the people who still remember just how special this whole business of living is, the people who have already lived through more than anyone should and know that they can still live well through more than even they can imagine.

Read my blog from 2 years ago today – 29/03/13 – They are married! > http://bit.ly/XLGbZS

A few Christmases ago I was given a gift of a good bottle of champagne, I decided to keep it for the right occasion. Yesterday at last brought that day I had been waiting for, the day to open and enjoy the contents, to toast those I love and care about and to enjoy as part of a celebration. I can’t think of a better time, than the day of my daughters….

It’s that time again

Posted on December 19, 2014 by livinginalimitedword

I found myself sitting here just doing nothing really, looking at things on line that I wasn’t even that interested in and this is normally my busiest time of day, something was wrong. It took me until I had dragged myself away and I was standing in the kitchen not really keen to get a bowl out of the cupboard that it hit me, I quite simply didn’t want any breakfast. My brain does this to me a lot lately, it just doesn’t seem to give me clear instructions or explanation of feelings, rather distracting me from knowing what it already knows, well that’s how it feels. How could I not know that I wasn’t wanting breakfast and the whole idea was nauseous, as that was finally the feeling that I had as I lifted the bowl and returned it to it’s friends, but to that second I was simply pushing myself to do what was right for my routine. It is just one example, the list would take pages, rather than just one post, I constantly get this feeling that I know something somewhere in the back of my mind, yet it takes some action of some sort before I manage to join the dots. It feels oddly like my brain is slowing down, which isn’t new, that feeling has been around for a long time, but recently it has been that little less subtle and that bit more like a constant slap in the face. I have been trying to work it out, well of course I have, when am I not trying to make sense out of things that so often don’t have any sense in them at all, but I can only put it down to two thing, being so terribly tired all the time and the almost constant nausea. Both are perfect for pushing you off your game and leaving you that bit lost in the middle of a world that hasn’t changed to your step.

I spent a little time yesterday skimming through some of my posts from the last couple of months and there is a constant theme of both those things, almost every post mentions one or the other. I don’t remember them either being so dominant in my life for such a long time, I honestly haven’t hit the point that I used to everyday around 10am when I finally woke up from my previous night sleep, I no longer wake up, I am simply existing between two impossible pillows, impossible as they are never quite deep enough or ever felt for long enough. The hours I spend feeling sick also seem to be growing, actually I don’t know if that is fair, what is, is that it is feeling deeper and more intense. I am also very aware that it is slowly pulling me down, not so much in my mood, but in how I feel about daily life, I don’t have the same enthusiasm, or drive, I am struggling more than I have for a long time. I am beginning to feel as I did when work was pushing me to far and I had to change how and what I did, by rethinking the whole work issue and how I could still produce what I did, but in a way that allowed me to feel alive at the end of the day, rather than like a drained prune. Unfortunately unlike work where I just sat for a couple of months writing programs that could do every step of my daily set work for me, leaving me only to deal with the stream of ad hoc requests, I can’t program my life or what I do. What I do know is I need to change something and I need to do it sooner rather than later, but what ever it is, it isn’t going to happen over night.

It is one of the things about life with any progressive condition, you live happily for a while, then start to slide and you are forced into reassessing and reorganizing your entire life and I do mean your entire life. It isn’t just about changing one thing, if you are still working and thinking that it may be time to stop, well I am sorry to tell you this, just stopping work isn’t going to be enough. Adjusting is about changing every element of your day, from how long you sleep, to when you eat and what you do in between. If you can without blowing your pension apart, go from full time to part time, that would be my recommendation. The good that working does for us as people can’t for most of us be replaced by anything less. When I was forced to stop, I knew that I had to replace it with something or I was going to sink faster than a stone, in my case I was forced out by redundancy and I knew finding another job as a housebound person was going to be hard slog. Despite working probably harder than I had for the previous two years, I failed, but along the way, thanks to my daughter insisting I was on Twitter, facebook, linkedin and more, I discovered something that along with my own addition of my then new blog, I built my replacement. In the past three years I have had to do many adjustments, progressive conditions all to often speed up and I know mine has, all I have kept out of what was once a vast array of site and online input, is now just down to my blog and twitter. Even twitter is now about half the amount daily tweets that I used to do, but it had to be done each time, as I am slowing down and my ability and energy is lessening almost daily at the minute. That is exactly how I have felt at every milestone that signalled change and it’s how I know I have to change things again.

Next to getting your diagnosis, admitting that you are getting worse and are at a point when something has to give, is the hardest thing about being ill. No one, not any of us want to admit we are failing and that is how it feels. I don’t need anyone else to tell me any longer, I know I am not failing, maybe fading a little, but not failing and no one else should feel that way either. I know that is easier said than done, I have beaten myself up about it over and over again and I am probably going to continue to, that’s because I am human and that is the one thing that is hardest to hold onto, being chronically ill is human and not an invite to be superhuman.

Please read my blog from 2 years ago today – 19/12/12 – Controlling Reality

Another night when I ran to my bed as soon as the TV let me,it’s mad the way that we let that box in the corner rule our lives. I know you will say why not record but I record all evening the best of what I’m not watching, that way I have reasonably good stuff to watch during the day. I was really in a mess yesterday….