A guilty secret

Posted on December 31, 2015 by livinginalimitedword

I found myself feeling some unexpected emotions yesterday. Adam had gone back to work and I was once again on my own. It was the oddest thing, but I found myself with a sense of ease. Don’t get me wrong, I missed him, god do I miss him, but I was also at ease. I hadn’t realised that I had actually spent the majority of our four days together, feeling guilty. It’s something I often feel at the weekends, but we have been in a settled routine for so long, that I had grown used to it. Almost every minute that Adam is awake, and I’m sat here at my PC, I’m feeling guilty. Guilty that I haven’t shut my PC down, and that I’m not sat on the settee beside him. I know that he is equally occupied doing whatever it is he does on his laptop, or his second favourite thing, relaxing lain across the settee, browsing on his phone, but the fact he appears content doesn’t change how I feel. If I were to shut this PC down, then I would just be sat in a different location and I would be doing nothing, something that drives me up the wall if I have to do it, for too long. Not to mention, that I would also be feeling bad about not doing what I have a need to, writing, tweeting and keeping up, with what has become my life. For me every day is identical, weekday, weekend or holiday, it always remains the same, it’s part of my way of keeping myself settled, de-stressed and able to live as healthily as I can. My routine, is even more than that, though, what I do here online, is incredibly important to me. It gives my life housebound life purpose, something we all need. Yet, still I feel guilty.

Adam has had to give up so much of what should have been his life, because of me. He has taken over so much more than just the odd chore, he has taken over everything I once did, and on top, has taken over what I can’t do for myself. He deals with my mail, looks after everything to do with my medication, hospital care and much more. Not to mention, a full-time job, or the fact that my being housebound, outside of work, makes him housebound, in so many ways. He might be able to walk down the stair and out the front door, whenever he pleases, but he too feels guilty, guilty about leaving me alone. It doesn’t matter how many times I’ve told him that he shouldn’t feel that way, as he has to have a life, he just stays here, inside, day after day, night after night, with me, the person at the PC. He should have friends, people who he can share the world out there with, people who are so much more than a disabled wife, which I so often feel, is a wife in name only. I have to be the most useless wife anyone could ever have wished for. When he is here, when I can, I feel I should be sat with him, talking about whatever, being true companions, and I’m not even that.

As things stand, our weekdays are all the same. Well, at least, they were. We used to get up at the same time, although our time together was brief, we, at least, spoke a few words and shared a kiss, before he went to work. With my insisted change that I can no longer be up at 7:30 every day, as I need more rest, we no longer see each other in the morning. He has to rise, get ready quietly and leave without a word. Weather permitting, he comes home for 25 minutes each lunchtime, stopping just long enough to put his mind at rest that I’m OK. Failing that, he phones and more than double checks, that I haven’t had some terrible accident, the sort, I have never had. Come evening, after he has been for a walk or stopped by the shops, he returns, for those precious three hours we can spend together before, I once more have to sleep, at 9 pm sharp. From then on, he’s alone, hour after hour, into the night. At weekends, he stays here, a short walk, weather permitting, but other than that, we are here in our home. Me, at my PC, him at his laptop, or doing the housework, cooking, changing the bed and carrying out all the other things that a house needs taking care of, not mention, his care of me. Weekend, or weekday, it’s just those three hours in the evening, it’s the only time we are truly together, and that leaves me guilty.

I guess that’s what chronic illness must do to us all. We land up feeling guilty, just as our partners feel guilty as well and there appears to be no way around it. When we first met and married, we were rarely at home, we didn’t spend our hours sat in silence, separately doing whatever, in the same room. We were together, connected always by hand or body, not isolated, not two people, more one. Having three in a marriage changes everything, as that’s how my health feels. It has pushed its way between us, separating us in almost every way, the only thing it hasn’t done, is to break our love. We can’t go out together, we can’t do anything together, physical contact causes me pain, so even when we are sat beside each other, we’re still apart. Three hours each day, when we watch TV together. Is it any surprise that I feel guilty. It’s me that ill, not him, but he is paying a higher price than I do. I might have all the physical pain, but I know he feels it too, in so many different ways. Chronic illness never affects just one person in a partnership, it’s cruel, destroying “lives”, not just “a” life. No one warns us that there is a future ahead that will be filled with guilt, because of these illnesses no one can do anything about.

On the odd occasion that Adam ventures out for a day without me, he always checks that it’s OK with me first. Why would I ever stop him from going anywhere? But I do understand his question, it’s that thing called guilt again. He’s guilty about wanting to do anything, without me. What he doesn’t get, is that makes my guilt even stronger, I’m guilty because I’ve made him feel that way, even though, I’ve done nothing. You can’t avoid guilt, it creeps up when you’re not looking and suddenly it’s there, once more eating away at you. No matter how well we understand each other, no matter how much we are in love, we both racked with guilt, over what we can’t change and what we should have had.

When Adam goes back to work after a few days off, he always jokes that I will have peace and quiet when he’s gone. That I will be able to hold a party, have fun or any other ridiculous playful notion he can come up with. Our time apart is good for both of us. Adam has a few hours of freedom, yes, I know he worries about me when he’s not here, but he has a taste of normal life, the life we all should have. I, well I too benefit, but not in the way he thinks, my guilt goes away. I’m not holding him back, he’s free of me, my needs and my health. In an odd way, we both have a few hours of freedom as I can sit here, doing what I need to, without the guilt that I’m partially ignoring him, which I’m not. I spend those hours not just busy, but as I said in the first few lines, I spend them missing him. But that love, you can’t escape it, any more than we can escape my health.

Please read my blog from 2 years ago today – 31/12/2013 – Just life

For those that don’t live with an illness that slowly destroys more and more of your body, I know it must be really hard to imagine the truth of our lives and how we even manage to keep going. I know because…..

Something’s, just make you smile

Posted on December 30, 2015 by livinginalimitedword

I shouldn’t have done it, but I did. When you start to feel desperate, we all think about things we shouldn’t do, but I knew inside, it was the only answer. Somehow, I had to reset my system, force my body to do what it’s supposed to, rather than running mad, as it has been the last few days. I remembered several months ago now, that I was at my wits end with the pain I was in, so I took the desperate measure of taking a double dose of my Morphine booster. I had gone to sleep scared, as I didn’t know if I had taken a dangerous dose or if I was going to be OK, I slept the whole night and woke with my pain much reduced. I never once thought that it was the Morphine that made the difference, just the fact, that I had had a really good sleep. Last night, I didn’t take a double dose, I took a dose and a half. Snapping the tablet was easy enough, swallowing it, not so easy, as the sharp edge kept catching on my throat, but on my third attempt it went down. All I was looking for, was for my body to slip into a deep sleep, and stay there. If I could bypass the fight to get to sleep, then go into a deep enough sleep, there was just a chance that when I woke, I might find the improvement I have been longing for. I lay there for a while, still feeling all the sensations, the insects crawling over my legs, the fire and numbness of my feet. Just as it has been for the last few days there wasn’t an inch that I could find, where silence was actually known or remembered. Everything that had been there for the entire last 36 hours, without a seconds break. I lay there, waiting, hoping and even slightly praying because I had quite simply had enough.

Adam had questioned me during the day, over why I hadn’t gone to bed in the afternoon. I told him the truth, I didn’t want to sleep, I was going to listen to my body and just do what it wants. What I didn’t tell him, was that total truth of why, I didn’t want to lie down. I didn’t want to be in bed just lying there feeling once again all the things that had kept me awake the day before. I had already hatched my plan, I was going to keep myself awake until 9 pm, then take my extra meds and sleep then. Sitting here, I was still able to blank the bulk of it out, I could use distraction to it’s fullest, not a total success, but enough for me to ignore all but the worst. When I woke just before 7 am this morning, I feared that it hadn’t worked. I was pain once again in my lower back and I was desperate to go to the loo, as for the rest of me, well my bladder and back, were screaming so loud, I felt nothing else at first. 7 am, there was an hour and a half before the alarm was due to sound. I wasn’t really tired, but I knew that I could still sleep and that hour and a half, could just make all the difference. I sat in the Kitchen for a few minutes, just smoking my cigarette and working my way around me, searching to see what I could find. What I found made me smile. There was pain, there is always pain, but there was also silence, beautiful silence. I had stepped back in time, between the what I now consider my resident oddities, there was nothing, normality, skin that was just skin, rather than a mess of messages that just didn’t belong. The first of my goals had been achieved, all I had to do next, was to lie down.

I have to admit, that I was hesitant, part of me said just stay up, accept what you have and have a good day. An hour and a half, though, is a long time when it comes to being relaxed and rested. I had to give it a go. Climbing back into bed, was as hard as it was to get out. I don’t know what has upset my back, but it is determined to produce pain in the morning. I know it’s not the mattress, we only replaced that a few months ago. I had hoped that it was just part of all these heightened sensations and although this morning, it didn’t hurt as badly as the past two days, it still hurt. I had also been playing with the idea, that I have been spending my nights, reacting to what I could feel, even in my sleep and I was somehow twisting my spine, but I couldn’t be sure. Once lain down, I found the perfect spot where the pain almost vanished, then I waited. At first, there was silence, everywhere but my back and my hands and arms. The wheelchair had done it’s normal, but the rest of me was totally silent. I lay there still smiling into the darkness, no rainbows of light, just darkness, and silence. Yes, there was a growing numbness in my legs, but it was just my legs, not my face or anywhere else. I smiled my way back into sleep.

The smile didn’t even vanish when I did get up to find Adam still asleep and not on his way to work. My fears of my new getting up hour had happened, he had slept on and was by the time I got up, late for work. Even that didn’t upset me, it’s funny how something as simple as sleeping deeply and my body shutting up, has made me feel so good. It’s three hours on, over those hours many areas of displaced sensations have returned, I don’t know what will happen when I next lie down, right now, I don’t really care, as I slept and I’m smiling.

Please read my blog from 2 years ago today – 30/12/2013 – So where am I

There was no catching up for me yesterday, I knew before I went to bed for my nap that I was already a couple of hours behind, no matter what I tried the time just kept slipping away. I am already over an hour……

Body dip

Posted on December 29, 2015 by livinginalimitedword

As soon as I lay down on my bed, I could see flashing lights. The last part of my body had joined in, optical neuritis was clearly playing a bigger role than I thought. I had been very aware that my eyes were just that bit more blurred than usual, and that the seasick sensation, when watching anything that moved, was growing stronger. I often feel it, so it’s nothing new, but when you can’t actually stand the effect of scrolling a page, well it’s time to give up and go to bed. I don’t know why, as other people say they can see them with their eyes open, but I only ever see lights, when I close my eyes. Once I was kitted up with eye mask and ear plugs, I lay down to find that it was brighter inside my mask, than it was outside it. Ribbons of light were flowing from top to bottom, some coloured, other were just bright. Seeing odd things when my eyes are closed isn’t unusual, in fact, it was the first signs I was aware of when my right eye was affected by, macular degeneration. The best way to describe it would be to say, it looked like a miniature petri dish filled with live cells, all wriggling and squirming, splitting and dancing, right in the center of the surface of my eye, but only when my eyes were closed, unless, I tried to concentrate on it. My vision wasn’t noticeably different at first, then the blind spots appeared. They were small, all in the exact same area as my moving friends, it was a bit like looking through a piece of lace. My peripheral vision was fine, it was just that central area, and it caused huge problems, as my right eye, had always been my good one, I am short sighted in my left one. If I were to close my left eye now, I can no longer read at all, the lacy spaces once allowed me to line up a clear area and scan with just that spot, but the clear spots have shrunk. Having optical neuritis on top, apart from triggering headaches, just makes everything harder as what is still normally good, is then blurred.

I was so tired, and felt so sick, that even though my skin was crawling with life, that once I relaxed a little and demanded to sleep, I did. An hour of rest and another of sleep, made a huge difference, actually, far more than the whole previous night did. I was a long way from perfect, but I was awake and the headache had gone. I hate headaches, they somehow have such a devastating effect, despite the fact that in the bigger picture, they’re nothing. I have always wondered how come I even feel them, when you consider how well my body is protected from pain, by the mass of tablets I swallow each day. Either, they are high on the migraine scale and I just don’t know it, or, just like burning yourself, something always gets through.

I have to admit, that yesterday I was feeling rather sorry for myself. It was one of those days where it didn’t seem to matter what I did, my body was determined to make life hard. I guess, that in reality, I was quite simply worn down by everything. It isn’t normal for me to feel that way, I am normally so good at keeping my life in perspective, just occasionally, I fail, and when I do, I fail totally. It’s nothing like falling into depression, but yes, I feel down. Even I get fed up with the whole thing, and just want to scream at the world, “This isn’t fair”. Nobody ever said it was, nor have I ever believed it is, but what life deals out to us, we just have to accept and get on with. I suppose, that I am entitled to just every now and then, feel as though I’m being picked on. Today, well I don’t feel that way at all, today, I am back in my normal stride and the fact my body doesn’t understand that when air or material touches it, that that is what it should feel, not fire, creepy crawlies or numbness, well that’s just the way it is. Not once since we redid our bathroom and removed the bath in preference for a really good shower, have I missed the bath, today I do. I suddenly had a desire to lie in warm water, I just have this feeling that warm water might neutralise the sensations. That there is a possibility, that if my body was surrounded by something it’s not used to, that it might just enjoy it, accept it and stop, feeling what isn’t there. Who knows if it would work or not, it’s just a notion. Maybe, it’s part of a desire I’ve had in the last few days to go swimming, something I used to really love, but the chances of that, are even less than a bath.

I’m not one really for dreaming about the impossible, but I remember once sitting thinking about winning the lottery. In my head, I designed my ideal home, not overly lavish or even big, I’m not that sort of person. But the one thing I wanted, even more than a house I could live in, in a wheelchair, was an indoor swimming pool. Although, I never had the opportunity to even try it, as all the swimming pools in Glasgow are miles away, or require expensive memberships, but I’ve always believed the swimming would help me. Even now, despite the fact I can do little, I know I could still swim and if, for nothing else, the exercise could change a lot. I know it’s a crazy dream, especially as I don’t do the lottery, but I guess we all need our dreams. Even though it was many years ago, I still remember it, right down to the colour of the tiles and ferns I wanted growing on one of the walls. The rest of the house, I don’t remember a single thing, just that one room. It’s odd the things we remember.

Even without a swimming pool, there are some bright points, this morning, my eyes have settled, and my vision just that bit better. My body, well, unfortunately, it’s still my body, despite the fact I would happily give it away, as my nerve endings are still on hyper mode. I just keep hoping that today, or tomorrow, or even the next day, I can say I have silence, even in the smallest part of me, that’s my only goal today, just to find one. The rest of it, it will unfold as it chooses.

Please read my blog from 2 years ago today – 29/12/2013 – Zombiefied

It’s one of those strange days, one where I know what I should be doing and I really don’t feel I have the energy or need to actually even start on any of them. I’m drained, quite simply the past week has……

Joyus

Posted on December 28, 2015 by livinginalimitedword

I have for years now, taken enormous pleasure in simply going to bed. It was the one place where my body was cocooned, which meant that the twitches and mini spasms didn’t shudder through my entire body. Even the next stage up, on the scale of spasm, seem to be reduced in their pain and their worst effects were held at bay. I have been lucky for so many years, in the fact, that sleep always appeared quickly, and I slip into a world where pain doesn’t effect me in any way similar to the day. Bed and sleep, have became my joy in everyday life. From just reading those few lines, it’s clear that something has changed, something is now intruding into my rest. In the run up to Christmas, I have written about the bizarre increase and new areas that sensations have been running wild. Yesterday was the first day, they found their way into my rest, in a way, that was somewhat disturbing. It’s normal when I get into bed that I will have some part of me, tingling or filled with pins and needles. Since I have been using my wheelchair, it is my arms, where it was once was my legs. Their upset, was clearly due to the fact that the muscles had been recently used, no awards for working that one out. It is also normal, for my diaphragm to be producing pain, and the change from vertical to horizontal, normally, triggers slowly tightening intercostal muscles. All of which, I can slowly manage with relaxation and drift into sleep, or just rest for a while if that was my goal. Yesterday, both in the afternoon and at my bedtime, lying down, didn’t dull anything, it sent my entire body into bedlam.

I have felt similar things during the day, but never quite as complete, or as intense before. My entire body, and I do mean entire, as I couldn’t find any part of me that was silent, everywhere was filled with different sensations. You name it, other than lightening shots, there was some part of me that was feeling it. The majority was my old friend numbness, followed by tingling, pins and needles and pain. I was in bed for an hour during the day and never, once, managed to shut it all down. I relaxed as much as I could, I worked on taking each part, past relaxed and into what I call sleep, basically, so relaxed that it feels as though they are no longer there. My success rate, for the first time in ages, was poor. I could turn the intensity down, but I couldn’t find any silence and definitely no sleep. I have over the last few weeks, become used to this same problem when I am up and about, but then, there is, at least, distraction. Distraction is something I find effective, even if it’s only an effect on my conscious brain. When you are lying down, in total darkness provided by a mask and with earplugs in, there is no distraction, the whole point of my accessories. Distraction means lack of sleep, so they have to be removed. Also, the reason, that I work through my normally highly successful relaxation techniques, it removes the distraction of my body. It didn’t matter in the afternoon, I wasn’t looking for sleep, just rest. Yes, it meant my rest was more limited than usual, but I did still rest.

Night time was a totally different story. I don’t know how long it took me to find sleep, as when I woke at 4 am to go to the toilet, I couldn’t remember sleep, just my voice constantly saying “relax”. I should have woken with silence everywhere apart from the desperate message from my bladder, but even then, the silence wasn’t there. It was the exact same story when I returned to bed, and then when I woke once more at 8 am, still with only the memory of my voice in my head. It now over 24 hours, since I last remember not have wild messages from every part of me, bombarding my brain. There has been no peace, no time when I haven’t felt the desire for a silence, that just can’t be found. I am growing more and more tired, I know I must have slept, but the benefit of any of it has been lost. My plan, of getting more sleep, seems to be further away with every hour. Right now, I want nothing more than some deep refreshing sleep. There is little point in heading to bed, little point in lying down, when nothing changes, nothing goes away. I am pushing myself to stay awake right now, as I have hope that when the point of total exhaustion is reached, which isn’t far away, sleep will win.

At first, despite the annoyance factor, I found this sensation display, amusing and fascinating. I was beguiled by the range and constant changes all over my body, caught up in the desire to understand. That has worn off. All I want is, a short spell of peace, I’m not even greedy, it’s not like I’m asking for it forever, just when it’s time for sleep. Just to take a step backward, as I can deal with it when I’m awake, we can all deal with anything when we’re awake. The maddening thing is, that I am almost sure that it was the overactivity of the last couple of days, that brought it on. Now, it is the cause of overactivity, because it won’t let me rest. There are times when my health really makes me feel as though I am losing the plot, today is one of those days. I have always done whatever I can do to work with my health, but just occasionally, it makes it impossible to do so. When it takes over in this fashion, you just feel floored. I swear that somehow, every tingle, every spear that prods at me, and every area that feels dead, is draining my energy even further.

I know I will get some sleep. I will be so far past just tired by the time my afternoon nap comes around, that I will sleep, maddening sensations or not. Right now, I have things to do, I have so many things to do. Maybe, I won’t wait, just tidy through what has to be done, then go to bed. Blessed bed, my joy in this ever annoying world. Please don’t take that one thing away, at least not now.

Please read my blog from 2 years ago today – 28/12/2013 – Painful answers

Yesterday brought Teressa and John here for the afternoon and loads of explanations to the past week. When the doorbell rang I had to unlock the storm-doors for them and as I was turning the key I spotted…..

A good day

Posted on December 27, 2015 by livinginalimitedword

I guess that it is going to take a while for me to return to being just me. Christmas is always the same, too much to eat, too much to drink and not enough sleep. All my great plans of getting up an hour later, have been happening, but they have well and truly been undone, by the desire to watch TV programs when aired, rather than the next day. I guess, that no matter how used you grow to the modern world, some pleasures, still have to happen at the right time, or their just not the same. Mind you, the modern world destroyed one program for us. Our sky box decided that it was going to freeze up totally and need rebooting, half way through “Dr. Who”. We still haven’t actually seen the end of it, as there just hasn’t been time, but we will, so no one, please, don’t talk about it. I have had so many programs ruined over the years, by some TV personality, or news anchor, deciding to talk about it, before I’ve seen it. I suppose, though, I have discovered why people don’t make life changing decisions, or changes to their lives until the New Year, there are just too many ways, for the Christmas season, to screw it up. Sleep will be sorted, but probably, only partially, until the first week of January.

On the whole, my body went through Christmas day without doing anything too horrendous, but it’s still working on making up for that today. The price of having a really nice day, as that, was exactly what we had, is a body that needs to recover. When you start from a low, a position in life where it doesn’t take much, other than a minor change, to throw your entire body into hell, well what on earth do you expect Christmas to do to you, other than destroy you. I guess in some ways, that why Adam and my spending a quiet day, just the two of us, is the perfect way to handle it. Yes, there is still a lot of change, that come with all the days trappings, but there is also a thread of normality, that is my anchor. I didn’t get through the day without pain, without spells when spasms were attacking me, but by keeping things low key, I survived. Without a doubt, it wouldn’t work, unless, Adam didn’t just see the need for it, but actually embraced it full heartedly. I remember the first year that we separated ourselves from family, I was so unsure about how it would work because of Adam. He has always been a family boy, in his life, there were four important women, me, his mother, his grandmother and his sister, all of whom he adores. It was when his Gran died, that Christmas was allowed to change, as his sister had her partner & his mother had moved out of Glasgow. If I had been well, I would have insisted on stepping forward and we would have taken on the Christmas gathering, which once happened at his Grans, but I wasn’t up to it at all. Nothing was said before it, we just had our first Christmas as a couple. But I do remember so clearly, how at the end of the day, Adam without prompting said just how nice it had been. Our Christmases were set for the future and we’ve never regretted it.

There isn’t a single aspect of life, especially family life, that chronic illness does affect. Too many people, the work of just setting a proper table, one that speaks for the day; of decorating the house fully to capture the season perfectly; meals that take weeks of planning and days of cooking; then all the shopping; the presents to be bought and wrapped; not to mention the day itself; is too much for many who are fit and healthy, for us, they’re a nightmare. I know without a doubt, there would at one point have been whispers that I, and possibly even Adam, never heard. Words said about how I was destroying things, refusing to take part in things, as it’s just one day, what was the problem? I know they would have been if not said, at least, thought, as until my health destroyed me, I would have thought just the same. It is incredibly hard for people who aren’t ill, or doesn’t directly care for us, to understand, it isn’t one day, it’s weeks. There is whether you’re the host or a guest, a stress to Christmas that is unlike any other time of year, and our personal monsters, just love stress. Although I not once felt as though I had had a drink, I kept myself gently dosed with enough alcohol and morphine, to keep my body relaxed. Probably, not what any Doctor would want to hear, but it worked for me. Just a day, with a meal, a large dose of normality, mixed with entertainment. Followed by who knows how long before my intestines recover and stop throwing spasms, in disgust at being stuffed. For all the aching and painful muscles that complained about the constant visits to the kitchen and back in my chair, how long before they die away? How long before I can wake up, feeling just that little bit more awake than when I went to bed? How long before I settle back to my “normal”? How long will all that and more take, after all, it was just one day? Did I miss those Christmases past? Yes. Do I want them back? No, no and no again!

There is a wonderful comfort found in knowing that although, I can’t make his family understand, or probably anyone else’s, that we still had a really good day. In fact, it was the last thing that Adam said to me before I went to sleep on Christmas night. “That was a good day!”

Please read my blog from 2 years ago today – 27/12/2013 – One more tear and one more to come

It seems that life is set to keep you guessing and to confuse you constantly, I still haven’t the slightest idea what is up with me, all I do know is that I really am not myself. Yesterday the tears didn’t flow…..