It’s messy

I knew that I would pay for it, but not quite as quickly or dramatical as I did. By 1 pm, I was in pain, real pain, my guts were telling me that it didn’t want all that stuff, I had given it. It might have been tasty, but by then, that, was forgotten, and my emergency visit to the loo, made my memory of it, even less lovely. It’s always the same if I eat too much all at one time, or within a very few hours. My insides for over a year now has worked on the principle that it has only so much space, so, what goes in, has to be balanced by the same amount out. No problem there you might think. Wrong. My insides now work about ten times slower than anyone else’s I have ever known. From mouth to gone, takes 14 days, relieved once every two days, the final one, is normally 12 hours of a dull ache, with the odd spell of intense reminders that it doesn’t work in a straight line. But I had overloaded the system on the entry side, pain, pain, pain, then run, or, however, you translate that on wheels. Just to prove that I really don’t learn, later, I did it all over again. Cramming in four slices of streaky bacon and two fried eggs, at the time of day, that I would normally, slowly, eat a small bowl of nuts. It, didn’t like that much either. No run to the loo, just discomfort right through the remainder of the day. Oh! I love life!

I guess, that, today, has to be back to normal, routine, has to reign. I go through this kickbacks every now and then. It’s not so much a “Why me?”, as that’s a truly stupid reason, it’s more “Give me a break”. Health is relentless, days fold into each other, and time never seems to be on our side. In some ways, it is the next step on, from the picture grid on the “sticky post” on the first page of my blog. The final picture in the grid is someone lying asleep in bed, beside a table, that is full of drugs, the step on from that would be where I am now. To put it into a picture, I think would be impossible. You would be looking at a thousand different faces, each showing a different expression. It isn’t just boredom or frustration with life; it’s not depression or giving up; nor is it anger or grief; even confusion and annoyance doesn’ t cover it; as it a touch of all of them all; with a huge measure, of just wanting to scream “Let me out of here!” Most of the time, life is fine, more than fine, but then this pop’s up, gnawing away at you until you just explode inside. Despite the fact that humans are creatures of habit, we are also worn down by it. I think I can give you a glimpse of it, from your own memories. If you think back to when you were a child, and you were off school, as it was the summer holidays. It has been raining for a couple of days and all you want, is to go out, with your friends, but your mum, wouldn’t let you. Remember how that felt. Mum was the enemy, the weather, an even bigger one, and life just wasn’t fair on every level. Then to just make things worse, you asked for fish-finger for lunch, what you got was a burger. It is all those pent up childhood emotions, on steroids and multiplied by a thousand, but not aimed at the petty, it’s aimed at the essential. I’m right now screaming for freedom, not just from my home, but from everything about my life.

If I had made it all the way through the past 8 years without feeling this at all, then, I would be a truly exceptional person. The fact, that I have been here before, means that I know that it passes. For a few days, I am going to be unsettled, fidgety and desperate to do something, anything, that I haven’t done in the past 8 years. Logically, that is impossible. Right now, logic isn’t my friend, if it was, I wouldn’t have eaten what I did yesterday, I knew what would happen, but I still had to do it, just as I had to get out of my chair and walk the other day. The driving emotion was different, but the actual base feeling was identical. No one wants to feel that their life is actually a prison, far worse than it would have been if they had been physically locked up, as you can’t argue with iron bars. My bars are different, maybe not made of iron, and yes, every single one of them, is invisible, but in so many ways, far worse and I did nothing wrong. When feelings like this appear, it makes every part of life difficult, in some ways, because they are just feeling, even harder. They aren’t things that talking about, will make better. Talking is about finding solutions, but there are no solutions to feelings, their just there, annoying you constantly. Experience tells me, that all I have to do is be patient and they will calm down, become fussy and eventually forgotten.

I don’t know if it is because of my health, or if it just the way that human brains work, but, I’ve noticed that I forget quickly. If, it wasn’t for this blog, there are so many feelings and sensations that I have gone through, that I wouldn’t remember. Often when I read a back post, I find myself somewhat alienated from it, as though I am reading someone else’s words. Clearly there is recognition of whatever it was, but the words, the finer points and the small details, I will have forgotten. Just as I recognise how I’m feeling, if you had asked me to describe it a month ago, it would have been vague, somewhat beige and lifeless. Have I forgotten, or is it just my mind protecting me from the worst of everything, just holding a mark, rather than a scar?

Today, well today, is going to be about bringing back the lighter brighter me. It’s going to be about adding the colour, the depth and the vigour, I’ve wallowed too long. We all have to wallow at times, but as long as we can call a halt, turn it around and push it back in its box, there is nothing to worry about. My fatigue and pain levels are high, so it’s going to have to be a gentle kick up the backside, but it has to be a kick hard enough, to push me in the right direction. I believe totally, that every part of our health can be and is, to some extent, under our control. In some ways, the last few days prove that I have stopped doing what I should and I’m paying for it. Mental or physical, we play a role in just how bad or good things are. I know all about relaxation, posture and mood, each plays a role. I dropped them all a few days ago and it time to pick them up again, it’s time to work on putting things right. That’s the problem with wallowing, as much as we need to do it, it’s hard work fixing the mess that the mud makes. It won’t be instant, but the wet-wipes are now out.

 

Please read my blog from 2 years ago today – 20/11/2013 – More on the list

Yesterday’s surprise of getting an earlier appointment wasn’t the only one, not long after I completed my post the phone rang and it was a call I had been waiting 4 or 5 weeks for. I have called the practise…..

Accepting a new future

I had a comment the other day that said that they thought I was missing me, to those who haven’t been through chronic illness that will sound like the maddest statement, but it’s a reality for far too many of us. When first diagnosed, one of the things that you go through is grief, you mourn for all that you have lost and will never have and it is as real as the grief that we feel when someone we love dies, as in so many ways, that is just what we have done. Back in 2013 I wrote a post about the steps of grief that comes with chronic illness and how I handled it in those early years and just how it doesn’t have a shut-off date, it lasts as long as you need it to. All too often though, we don’t recognise our grief or even the fact that we are in need of another spell just spent putting behind us what needs to be packed away, simply so that we can move on again. It is actually one of the pitfalls of blogging as I do, as I often reopen things that some might say that I would be better off leaving behind. That in itself is a huge mistake, if something has reopened a soar, be it at your own hand or simply something you saw on TV or read, it has to be dealt with, it won’t just quietly put itself back in its box and go back to sleep until you put in the work.

Being housebound has a habit of putting everything under a microscope, it doesn’t matter how small and unimportant something might seem to everyone else if you are trapped with nowhere to run, those small irritating things have amazing power to grow and grow and grow. Last week the catalyst was the pain, but what was getting me down was how useless I was feeling as it didn’t matter if it was just picking up a glass, it was pushing the pain levels. I couldn’t do anything about it, I couldn’t go out and do something to take my mind off it, all I could do was sit and make it worse and worse in my mind not just my body. I still can’t do anything, but what has changed, is I took a couple of days to not just feel sorry for myself, but once again I grieve over my loss of my physical ability to lead even a physically limited life. When I wrote that post back in 2013, I thought that the worst of it was over, that I had said goodbye to everything and that the only major hurdle ahead of me would be the transition into being bed bound, I was wrong. I guess I had forgotten all the steps that happened from diagnosis to housebound and I wasn’t allowing in any way that there was a strong possibility that there were just as many steps from housebound to bedbound. Once I had had time to think after I was told that I had PRMS it appeared to me that there were four major points in my future, points that would take a huge adjustment. The first was having to use a wheelchair, as I said before that is something not to be fought, I made that mistake and put myself through hell for no reason and I honestly wish I had given in a lot sooner. The next was housebound, that one scared the hell out of me, but in my post on grief I have explained why I found it easier than I ever thought and how I myself took steps to make it so. The third is bedbound and the fourth and final death, or I should say the stage when death is imminent, I didn’t realise that there were so many tiny hurdles along the way.

I don’t know why, but I never once allowed in my head to see that losing my mobility was actually not the worst thing that could happen and that the steps from housebound to bedbound would be quite so many or ever so painful. I thought that it would be a bit like the progress from walking to a wheelchair when for me it was increased fatigue that eventually takes my legs away from me. It made sense that it would be that growing fatigue that would force me into being bedbound and it still might well be, but nowhere on my scale was there anything about my internal nerves shutting down making both processing food and breathing beyond just difficult. I had never accounted for such things because I never knew they could possibly happen. I grieved when they told me I had COPD and that the mechanical side of breathing was shutting down and is probably the thing that will eventually kill me, of course I grieved, but grief doesn’t prepare you for what goes along with it. Maybe I just didn’t want to know and not thinking the whole process through was my mind protecting me from the reality. The slow downwards slope of the whole process of my bowels shutting down was another thing that I didn’t really think through to its final conclusions. I still had this mad idea that a doctor would fix it, which is something rather stupid for someone who has had nothing cured by a doctor for years.

Over the last four months my bowels have almost shut down completely, in the process they have been playing hell with my lungs. I never foresaw the pain, the distress or the simple tumour that living in this way would bring with it. I never once even dreamed that I would be still just housebound when my body got to this point, somewhere in the back of my mind, I saw this all as a long way into the future, but it’s not, it here right now. For four months, I have been kidding myself, playing games in my head that all I had to do was work with it and life would return to some form of normality once they brought out their wand and waved it over me. Every breath I take is telling me that that really is nothing more than a dream, I spend every day with bands locked around my ribcage and lead waistcoat that is being slowly tightened from my shoulders to my waist and when I lie down crushes me. At times, my breathing is so shallow that I fear I am not getting enough oxygen, but when taking a deep breath it sends pain not just through my upper, but also my lower abdomen, breathing becomes a difficult choice. That is physical, but the mental impact of feeling yourself dying a little with every day, is hard to accept and harder still to explain to others. Somehow, I have jumped forwards and combined two totally different time phases into one and the mental impact of that is almost as painful as anything my body can physically create.

I am missing me, but not the old me, I missing the “me” that I thought I would be and the way that I thought that “me” would live. I had created a dream to replace the on I had prediagnosis, a dream that suited me as it was gentle and it was forgiving and yes I needed to grieve the loss of that dream. Reality is a cruel and hard thing to face up to and if there is one thing that can make us face it, it is illness. My reality isn’t a gentle thing any longer, it is a violent and aggressive monster and like all monsters, it needed facing and bringing down to size before it took over everything around it. I am adjusting, I am slowly rebuilding and accepting what I have been blinkered to and it’s not an easy process, so I don’t promise I will be bright and breezy or that I won’t at times moan like hell, but I have to get this sorted as I am not ready to roll over and give up, not yet anyway.

Read my blog from 2 years ago today – 5/05/13 – The Personality Factor

I have managed in the last couple of days to make a complete mess of my systems for twitter post in the last two days, one day would be bad enough but two it unbelievably stupid of me! I can’t think how I didn’t notice or how it started happening, I have had this happen on a smaller scale in the past but this was a mega mess up which won’t clear the system until midnight tomorrow. I know everyone makes mistakes but……

The cost of modern life

I’m cold, I knew it was cold this morning even before I got up as I woke at some point with both feet on the floor again, it really is the most stupid position and one that doesn’t make the slightest bit of sense. Yet there, I was freezing cold and my legs both numb and heavy, almost too heavy to lift them back into the safety and warmth below the duvet, my back aching in objection to the whole thing. I can’t be totally sure which it was that woke me, the cold or my back, but it was my back that objected strongly to the twist that was applied to it a the first sound of the alarm clock in what felt like only seconds after my leg retrieval. The temptation to remain below the covers was huge, there is something even more compelling than pain at that time of day and that is warmth, warmth has a huge attraction, but I couldn’t risk the upset to my routine, cold or not, I had to get up. It is totally my own fault that the house is cold, I have for the last couple of months been turning down, then back up again the heater in the hall which keeps the whole house warm, even in the coldest winter, but last night I made a much bigger mistake, I turned it off. I made my way through here as fast as I could, not even stopping to go to the loo or to fetch a glass of coke, I knew that I had to attempt turning the fire on while as I was at my best and those few minutes are such a small window. As much as I love our fire for the way it looks, it is truly not the best design for someone who can’t kneel down to be at its level, but today it played my game for a change. I have often thought of making an actual list, as there are so many thing in this house which scream bad design when it comes to their usability by someone who isn’t totally fit, that I have many times added lines into my posts suggesting that designers think again, maybe one or two might actually listen one day to those who aren’t totally fit 30 somethings with money.

It doesn’t matter how much I hate being cold, I am already dreading the next few months and although selfish of me, I really do hope we have a rotten summer. Everyone in this world, including me are longing for the end of the winter temperatures and sunshine strong enough to heat the stones around us to fight off the cold of the night, but I drop off that equation when it comes to it getting any warmer than that. I was never a sun lover, never someone who would lie in the sun and get a tan, but these days I hate the summer with a passion, summers heat is probably the biggest single thing that makes everyone with MS, regardless of type, worse. Our nerves are so shot that there is no way of guaranteeing them comfort ever, it is bad enough that they cause us whatever unknown madness that our own bodies can come up with, to be caught knowing what the cause of our pain is and to be powerless to do anything about it, is a hundred times worse. There isn’t a fan or cooler that can remove the power of summer totally, no matter what they say on the box, at best most of them just recycle the same, or slightly cooler but still hot air whilst running up just as huge bills as we have to live with during winter because of the cold. MS is a loose, loose illness when it comes to temperature without any true win, win ones.

Tears were just rolling down my cheeks, it’s something I know that I do with so much more ease these days than I ever did years ago. I would actually go as far as to say that although I was still the person I am now, I had what I thought was healthy distance between myself and those things I saw on TV or in the movies. It didn’t matter how sad the story or even how uplifting, tears never once escaped me, unless there was something that I saw that was too close to my own life that the pain stopped me watching. There were many occasions that I have walked or ran from a theater or room simply because I couldn’t deal with the memories that what I was watching were stirring inside me. Oddly I can pinpoint the two things that changed that for me forever, first is one that I wrote a whole post about and that was forgiveness. It is easy to say, but hard and painful process to go through, but one I now honestly feel is essential to all of us. My tears had been blocked by so much anger and fear that I was carrying around inside of me, as I have said before forgiveness is a two way street as we all too often have to forgive ourselves as well as those involved. I never before I was housebound had the time to do nothing but think about me and to go through everything I could remember from childhood on, but once done, well I felt so much stronger and so much more able to be me and yes along the way I cried a lot, but I started to free the tears of emotion for others without turning them on myself.

The second, well it was the day that the doctors started that ticking clock and I knew for the first time that I wasn’t going to live forever, in fact, it was worse than that, my time was totally limited. Facing your own mortality is very different from being diagnosed with a chronic illness that will kill you at some point, that some point could be anywhere, including the time that your life might normally have ended, but knowing, really knowing that you will never get that far, changes everything inside you. Once I had grieved for myself, I started grieving for everyone else around me, but that too ended and I thought that that was it, it wasn’t. The two things together plus this illness now means that I cry at the drop of a hat, but then there are tears like those from a few minutes ago, I saw actors showing such pain at the death of a loved one, that before I knew it, tears rolled and I felt true pain inside me. Oddly, it is an amazing thing that I wish I had learned to do when I was little, rather than being teased by my siblings and living through more things than anyone should that just closed them off. When the damage done by my PRMS started to make me cry for nothing and I do mean nothing, I hated it, I hated it with such a passion and was so embarrassed by it, that I chose at work to be hidden in my own office space where no one could see them and at home I just tried to hide them. Now, I actually would say that off all the things that PRMS have changed in my life, this is one that I thank it for. I thank it for opening up that route to my tears, despite the embarrassment that I felt. I thank it for making me take the time, even thought that took making me housebound so I could go through that whole forgiveness process and I thank it for teaching me that death is happening and it has to be embraced along with everything that goes around it.

It doesn’t matter how hard our illness is to bear physically or mentally, there are things that it opens up for us as much as it closes off many other, it isn’t always a totally take, take situation. Ask anyone with any chronic condition and they will all tell you that they now appreciate life and they now also feel so much more empathy and compassion for those around them and in the further outside world. It doesn’t change us as people, what it changes is the intensity that we give to life and everything in it, something we didn’t have space or time for before and every one of us just wish we could teach that to everyone else, without them having to become ill first. Everyday life, going to work, family, home and our modern busy lifestyle squeezes out what is really important, the result is we have lost touch with ourselves.

Read my blog from 2 years ago today – 20/04/13 – What happens next?

This may not sound like much but for the first time in more months than I ever planned in my head, my living room curtains are no longer closed. Open in the hope that winter has gone, I did actually turn the central heating off a week ago and the house has held it’s temperature, so fingers crossed. It isn’t the only thing that I have opened today for the first time in ages, I actually have just opened my entire collection of email accounts.

The past is never buried

I am sure that I am not the only person who has found themselves with a strange desire to do something, but when thought through, well it just seems stupid. Yesterday after I had finished my post I once again had this desire to email my old agent from when I was a DJ. I was triggered a couple of months ago to search on line to see if he is still around and he very much is, with about 50 DJ’s on his books including just one female. I was the very first female DJ John had ever taken on and the grape vine told me it was years before he replaced me. I worked through him for 6 years, but I would never have called him a friend, he was someone I spoke to every week and saw once every few months, but when I found him on line with an email address, I was so tempted to send him an email that simply said, “I am glad to see my legacy continues, but I had hoped you might have by now more than just one.” As I said, what would be the point, I am housebound, I am never going to see him again and I would just be opening myself up to having to explain about my health. I very publicly a couple of years ago here in my blog, went through finding and connecting with someone who was once my best friend, actually the closest friend I ever had. It was a total disaster as I wasn’t able to be the person she wanted me to be any longer and I quickly got the feeling that she felt guilty about disappearing on me the day after I married Adam and more guilty when she read about my health as my daughter sent the links to my blog. With in weeks we had split, she just didn’t seem to have time, despite having a 6 week holiday, to be in contact, not even an email when on holiday. I just didn’t want to be treated that way, so why would I want to contact someone else who my friendship with, never existed.

Anyone who is disabled, ill or housebound will tell you the same thing, friends vanish as your health gets worse, it is unfortunately the time when we need them even more and I have written several times about all that does to us as people and what I believe is really behind it, no malice is intended, it’s just what happens when we move away, nothing moves you further than your health. So why would I even think for a second about putting myself through it again. It couldn’t be more simple really, we all want to be the person we once were. It also couldn’t be more painful either, as there is no difference between grieving for someone who has died, than grieving for the you who has died in so many ways. Memories are always going to be a double edged sword for everyone, ill or not, as they can both make us smile and laugh, but they also can make us hurt because we have lost so much of what we had back then. I doubt that anyone can work their way through their past lives without a mix of every emotion possible, but there a few things that change not only with age, but also with health. As we age we start to loose those people who defined our lives at different stages, people die, it’s a fact of life, one none of us can avoid. When your health has become a barrier to all those accidental meeting we all have when out and about and we have lost all our contacts who could keep us up to date with the lives of those we once knew, it starts sooner. All those people may still be alive, but in so many ways they died when I became ill.

Just writing that brought more of my untimely tears streaming down my face, which tells me without a doubt that I hit the nail on the head and hit it hard. I have been housebound now for 8 years in January, that is a long enough to have lost everyone apart of course from Jake, who has been a great friend now for about 20 years. We met through my being a DJ and clicked as we both new the Glasgow music business backwards, he owned his own studio and PA company, not quite as grand as it sounds, trust me it’s hard work, but even he didn’t know half the people I did back then. In comparison Adam and I have only known each other for 16 years and none of his circle knew any of mine, different worlds brought together. That is the truth of my world these days, 2 people who have stood by me, out of more than I can actually remember any longer, probably the truth of millions of lives that have been smashed into fine dust by our health. The truth that far to many of us know all to well, the truest thing that can ever be said about chronic illness, is that as it worsens, the less people we will have to just talk to, or even see.

Reaching out may work for some people, but I am sure the truth is, it will be a small number. Tracy isn’t the only person I have tried to bring back into my life since I became ill, I tired with two school friends and with some I knew before I met Adam. The results have always been the same, it only works for a short time and only when I do all the running, the minute I am late answering an email, or I couldn’t make it to the pub that weekend, they slowly drifted off again. I suppose that if you were once the person who was out and about and always had friends surrounding you, it is hard to ever accept that that person is gone. I know that that is what this blog is about, although I never intended to even write it, it just fell out of my head and here it is once more out there for others to read. I opened something yesterday, a wound that I thought had been healed so well that I would never have to feel this again, but I guess that was rather naive of me, as how do you live your life without those memories of time past, you can’t. It’s seems there is another symptom to chronic illness and that is grieving for yourself and it appears that never really ends.

 

Please read my blog from 2 years ago today – 06/12/2014 – Body mass changes

My right leg for a change is the one requesting amputation but as they say a change is as good as a rest, well they are wrong, I would rather have the rest. lol. There are times that I am sure that all of us who live in the Chronic brackets just wish that we could flip a switch and turn off the whole thing, just bring a time……