Making sense of my life

Early Friday morning I had a smile put on my face by a delivery. It wasn’t what was delivered that made me smile, it was the delivery man. No, he wasn’t showing off a six pack, or astoundingly attractive, in fact, he was over skinny, with rather ordinary looks. What made me smile was something he did. I hadn’t expected the first delivery incontinence pads quite so soon, as I had only been on to their website the day before. It had explained that the delivery would arrive in plain packaging and made a promise that the whole process would be discreet. All of which I had forgotten, so when I was handed a huge heavy box wrapped in gray polyethene, I naturally said, “Do you know where this came from?” The driver leaned forwards and whispered, “It’s your pads.” He said it so quietly, that I had to ask him to repeat it, which he did, still quietly, and taking discretion to the limits. You couldn’t fault them in their promise.

I actually needed a smile from somewhere, as I have to admit that I really wasn’t looking forwards to the day at all. In the morning I was expecting the district nurse and I knew that I needed the enema that day. From earlier experience, I knew that the whole process was going to exhaust me. The energy required was daunting to say the less, but I was determined to get through it. On Thursday night we had cleaned out my wardrobe and Adam took 7 bags of clothes and shoes down to the bin. The bulk was made up of dresses all ranging from size 6 USA to size 10 UK, sizes that wouldn’t go anywhere near me. The only thing I held onto, was my wedding dress, which of course won’t fit me either but as it has spent 17 years stuffed into a plastic bag, from which I had intended to have it cleaned and ironed, but never did. There are always those things that hold sentimental value to great to throw out, some got ditched, but not that one.

Adam had presliced about a third of a can of cod roe for me the night before and was coming home at lunchtime to lay the roe, onto some melba toast with some cream cheese for me. While here, he would also do all the running around, bringing my meds and so on through to the lounge. We spoke the night before about how we were going to make things work, going forwards. Without a doubt, I need him home on the days the nurses are here. So we are working on a menu that he will prepare in advance and when home for lunch, just pop them in the microwave for both of us. I am also on the look for a mini fridge. It has to be just the right size and preferably black so it can be morphed into the room. Once in place, I will keep my bottle of drink in it so I don’t have to keep going to the kitchen. I hope I will also be able to keep some food in it so that some meals and snacks will be on hand. I just have to find the right fridge.

No matter how organised life is, or how much you try to make things flow, sometimes, the true impact isn’t about any of those things, it’s about feelings, most often the sort that words somehow fail to explain. If there has been one thing recently that I have had more than anything else, are feelings, the sort that runs away with you and leaves you stranded, with nothing to say. Trust me, even I can run out of words. The worst thing is, it leaves both Adam and I struggling to make contact, I am so tied up, that saying anything beyond a grunt or something that comes out sounding like a criticism, seems to be impossible. I hate myself when I am like this because of Adam. If I could hide away from everyone and be as alone on the outside as I am on the inside, then life would be a thousand times easier, on both of us.

There are so many stages of chronic illness and with every one, there are issues that you never expected to find. From my last few posts, it is clear that I am caught in one of those that is just tearing me apart. Dignity and independence are the two things that without a doubt, are the most important when it comes to self-worth. They are knocked and bashed around with a freedom that you just don’t understand until you enter this world of ill health. We spend our lives thinking that there is nothing that we can’t do, just to find ourselves suddenly physically unable to do anything. With each stage, you lose even more although, you already believe that you have lost everything, and the impact that has is colossal. Everyone around you is keyed up, ready and watching for those first signs of depression, waiting for that day that you crumple. When you don’t, they see you as unbreakable, the person who deals with everything with ease, let me tell you now, there is no ease about it. Just because you don’t become clinically depressed, doesn’t mean that we don’t hurt. My self-worth has been challenged continually, but this time, it is on a scale that I thought like everything else, would arrive bit by bit, rather than all at one time.

Six months ago, I thought of myself as already useless, happy, but useless, now, I can’t find a use for me at all. Yes, the happiness element is still there, as long as I can keep my mind off the fact that my body has found new ways of taking my self-worth and dignity, hanging it out in front of me and laughing. I know before someone tries to remind me, that I have a worth to so many others out there going through this shit, and yes, I know Adam says he can’t live without me, but I’m talking about my day to day life, the one I lead, away from this screen. When you reach the point where wheels have replaced your legs, where other people have to make your body work and even more others, have to clean it for you and dress it for you, well what use are you? All I have left that I do for myself is to feed and water me. The impact of all this, is so huge, that as I said, there are no words for it. They appear in sudden waves that hit you off your center and leave you lost. I wish I could explain how all this is picking away at me and how despite all of it, I am still holding onto happiness.

The more I try to find a way of telling all of you, because I know that it’s important, the more confused that it all becomes. At the core of it all, I believe is my love for Adam. As it doesn’t matter how hard my health tries to destroy me, there is always that love standing there like a guardian, warding off its attempts to finish me off. I can’t explain it better than that. There are no words, just this shield that stops me from falling into that depression all of us fear, but it doesn’t stop it whipping me hour, after hour. I have become a creature who can’t exist, without others to care for me. I am the needy, the being that is tended and administered to, I take and I take so much and give back little. Is it surprising my head has a hole in it, where everything, from every minute of my life, bounces about, and I have no idea what I really feel. I just hope that within this, you can find the truth of how I feel, because I’m even finding that hard.

Please read my blog from 2 years ago today – 11/07/2014 – Time to change again

I wish I could understand why it is that I so often wake during the early hours, to find that I have once again I have somehow managed to twist on the bed into a position where my head is still set on the pillows in its normal position, vouched for the fact that my hair is still spread across the pillows as I place it each night, but with both of my feet out of the side of the bed and actually flat on the floor. Waking like that is incredibly painful, partly because I don’t have the strength to pull my…..

So much good, from the bad

Yesterday should have been a really good day, as I got the long awaited letter from PIP. Yes, I know that the assessor told me that there shouldn’t be a problem, but you never really know. Well…….. OK, she was right. Not only have I been awarded what I had been on before, they have actually increased the amount by over £100 a month, much needed now that we have the bill for the carers to cover. Without a doubt, it was the high point of the day, one that didn’t actually start well at all. It happened again, a second night where I soaked the bed through, and just as the first time, I was totally unaware of it happening. I woke for no reason I could find, to discover what had happened, and the guilt started at that second and lasted the whole day. Adam has taken a few days off, with the idea of just relaxing and resting, instead, he spent it washing, tumble drying and shopping for incontinent towels as clearly the towels I had in the house for leakage, just weren’t up to it at all. I had hoped, they would see me through to our next shopping day, when I could discreetly purchase some pads that would supply more safety.

I know that Adam is from a different generation, he doesn’t bat an eyelid at going to the supermarket to buy such pads for me, but I come from a generation which meant asking him, was incredibly difficult. When you have been brought up in a world where women don’t have periods, nobody goes to the loo or passes wind in front of another and only babies need nappies, a lot of things don’t come easily. My embarrassment meter has been way of its highest scale now for several days, but it still didn’t make it any easier. He set out from here after I had shown him the most common brand online, so he could find them with ease, even he admitted it is an aisle that he really doesn’t hang around in. He totally surprised me by coming back with not just the two different sizes I asked him for, but even a totally different brand as well, so I could see which suited me best. He surprises me all the time with acts like that. He has told me so many times that he wants to do more, to be more involved in my care, so that my life can be made easier, and it has been me over and over that has blocked it. Not just for those reasons, but yesterday would have been impossible without him.

I had to phone the doctor again yesterday morning, as I had noticed over the last few days that my feet had been badly swollen, not just their normal puffy, but grossly deformed with fluid. It was so bad that they were actually painful and when I did the press test, the crater left in my upper foot by my knuckle, took ages to refill. They didn’t just not feel like my feet, but I was also for the first time quite sure, that the swelling went all the way up my legs. When I woke in the morning, they had only gone down a little, and my hands were now so swollen that my rings were cutting in. I take Furosemide already, 10ml dose twice a week and a 5ml dose in between. Normally that is enough, but it’s not touching this at all. He has increased my dose to 40ml for the next 5 days to see if that helps, plus he is sending the district nurse out to take some blood, just to rule out that anything else is happening. As soon as I spoke to him, Adam poured out the top-up amount as I had already taken some earlier.

No matter how much fluid I passed, my feet kept growing. When I switched off my PC at 6pm, they were killing me. The pain just kept increasing and I didn’t know how to sit any longer. It was Adams idea that we tried walking to see if I could break up the spasms that were appearing all over the place. We slowly walked back and forward the length of the living room. I held his hands tightly as he walked backward and I wobbled all over the place. It didn’t work, the spasms kept coming. Out of desperation, we decided to take my socks off. The ones I am supposed to wear as I am at risk of a deep vein thrombosis. It worked wonders, socks gone the pain subsided, as long as I didn’t try to stand. The skin on my feet was pulled so tight, that they felt as though they might split. My feet looked worse than the night before. This morning, the problem hasn’t changed the slightest, they are still swollen and already painful. Despite the Frusemide I haven’t really passed any urine at all this morning, I’m just hoping the nurses will be here today, so they can see what is going on and report back to my GP.

I really don’t know how I would have gotten through yesterday without Adam being here. It was one thing after another, including yet another argument with our internet provider. Emotionally, I would have been a crumpled mess, physically a total disaster and there was no way, I could have washed all the bedding yet again, I’m still recovering from the first time. The good news there, the bed and I were dry this morning. So much went wrong yesterday, that not even the good news from PIP really got greeted with the joy it should have been. You could look at yesterday as mainly bad, mainly filled with stress and overpowering emotions, not the good sort, but it wasn’t like that at all. Yesterday taught me much especially about Adam and his commitment to caring for me no  matter what it entails. Yes, I know the words have been said again and again. Yes, he has shown it by taking on so much and already doing so much for me, but yesterday was different. Yesterday was a full on “me” day, from start to end, and not once did he pull away from, or seem begrudging about his involvement. He showed me nothing but caring and understanding throughout. We haven’t had to live through such an intense “me” day, to date, the worst have been bullet points in a week, those bullet points became hourly yesterday. There is a huge difference in someone saying, “Don’t worry, it doesn’t matter what happens, I here for you” and them actually having to live it. I never doubted him, not at all, but I somehow I didn’t expect the total grace that he handled it all with. There wasn’t a single sigh or face pulled, none of those things I am used to seeing and hearing when he’s asked to do something he rather not, right then, or sometimes ever, but still he goes ahead and does it. Yesterday was totally different, and in an odd way, I’m glad my life went mad and it all happened as it did because it has shown me just how committed he really is, when it comes to being my carer.


Please read my blog from 2 years ago today – Becoming desperate

Last night turned out to be the worst evening I have had for a while, I just didn’t know what to do with my body. I spent the entire evening trying to break the feeling in my muscles, they were tense all the time and no matter what I did, there was no relief at all. Trust me I really did try everything, I stretched them in directions I didn’t think possible to twist my arms into, I pushed again solid objects, I pulled…..

It’s still there

It seems that with every day that passes, things are changing in my life. It’s not just the physical changes, the things that are clear to anyone reading my blog, but it’s also the psychological and emotional effects of all that is happening. I am having to adjust at breakneck speed, as each thing that happens, just hasn’t allowed me to assess and work my way through it, before the next issue, screams it’s way into my life. It has got to the point where I don’t even feel that I am even reacting to anything for at least 24 hours. I appear to just accept on the surface but then, bang out of nowhere, the next day I crumple inside and truth of it hits me. If there wasn’t enough going on, I have invited another to join all the mess that is now me.

It struck me over the weekend, just how ridiculous this thing I have about Adam seeing me naked, really is. Yes, I can and have, given many reasons over the years I have been writing, but none of them make it right. From the fact that I can’t stand the sight of my own body, right through to the biggest fact, he hasn’t seen me naked for at least the past 12 years, possibly longer. Like many marriages faced with all the issues that conditions like MS causes, sex became something that simply stopped and has never started again. At the start, it was  because of our joint fear of the pain that it caused and was compounded when my libido totally vanished. Naked wasn’t required, something that as my weight rose once I because housebound, I was grateful for. When it became clear that I wasn’t coping with things like having a shower, I chose to have a carer, rather than Adam seeing my decrepit body. After only three showers, the fact that I don’t have a problem being naked with a complete stranger, it started to wonder around in my head, just how wrong the whole situation was.

I have put myself through total hell recently about the whole thing and just when I was coming to terms with it, those tumbling thoughts, started to ask, “Then why not Adam?”. I was totally shocked the other evening when a similar collection of words, tumbled out of my mouth. I knew Adam had accepted the situation, but I also knew that it hurt him, and hurting him, isn’t something I like doing. I had started the conversation, and I also knew that I really meant what I said. I want to get past this, to be able to feel comfortable naked in front of him. There are so many reasons for wanting things to change, but what had brought it home to me, was the other night when I wet the bed. It had shown me that there are a lot of situations ahead of us, where I might be forced into that situation, and I honestly fear reacting badly, or not being able to cope with it. I don’t need anyone to tell me that it’s stupid, I fully understand that, but when it comes down to emotional reactions, you don’t need me to explain how unpredictable they are. Add in the damage that has been done to my brain already, and as time passes will be done again, well, we really have to somehow get past it now, while I can still be rational about it all.

How we go about it is the biggest question that neither of us fully answered. Adam suggested that I continue with things as is, but the next time that dye my hair, that then, he should wash the dye out for me in the shower. I dyed my hair last week, so we are looking at maybe 6 or 8 weeks time. I think his idea is that gives me time to think and time to get used to the idea. I agreed, but I fear that it is still a case of nothing to everything in one quick act, and it could make things even worse, and hurting Adam even more. I have so much running around in my head just now, and I just feel as though what I have done, is to give myself yet another one.

I spent the afternoon yesterday, sorting out some of it anyway. I have found with ease some pads for the bed, that apparently, will hold up to 3 liters of liquid without leakage, plus they are washable. So I have bought two to start with, I hope that I won’t need more than that, but they are on the way. I also bought some underpants or knickers depending on where you live. I haven’t worn any for most of my adult life and when I did, it was just a g-string. Until a few weeks ago, the leakage that I had, was very limited and of the nature of few drips, rather than enough to wet my clothes. I have been using pads whenever I have been going through bad phases of it, without proper knickers which yes, is possible but often uncomfortable. In the last two weeks, I haven’t been without them, but I couldn’t go on like this forever, so I decided it was time to join the rest of the world and wear them. It is all beginning to add up financially and all because I’m not well. I’m hopeful that what I have bought, will see me through until I see the continence team.

When I spoke to my doctor the other day, I discussed what had been said to me when I was at the hospital. He hasn’t received the letter as yet, but he put my Morphine slow release tablets up from 70mg to 90mg twice per day. I am only on my second day of them, but they are really making a difference, the discomfort that I have lived with for the past three years, has been reduced to a more background level, rather than driving me nuts continually. It has also reduced the pain levels throughout. The feared fog or grogginess just isn’t there. If anything, I would say that I am that bit brighter, which if you think about it, makes perfect sense. So at least today, I can end my post on a positive note, something I fear has been missing in the last couple of weeks, as I have often said, the good is there when you look for it.


Please read my blog from 2 years ago today – 23/06/2014 – Not an answer, but it helps

My body feels like a wound up spring that want to explode but can’t. It took me nearly 3 hours to sort out the overnight tweets, nothing odd there but I was finding it harder and harder as every minute passed to use three keys on my keyboard, Ctrl C to copy the name, Ctrl V to post them onto my spreadsheet. Each time I did it I felt as though all I wanted to do was scream loudly, not out…..

It just keeps coming

“I wet the bed.” “Last night, I, wet the bed.” I’ve been saying it over and over in my head all morning, as I honestly don’t believe what happened, but it did. I had woken just after 4 am as I was freezing. When I pulled back my sleep mask the reason was clear, I had totally thrown the duvet onto the floor. Something else I don’t believe, but there it was, just holding onto one corner by my right foot. The solution was simple, sit up and pull it back over myself. Once I laid back down, I started running the idea of going back to sleep, now that I was warm. Sleep glorious sleep. Then I remembered that I have been having a mild issue with leakage, nothing much, a few drops or at the worst, an eggcup full passed as I tried to reach the bathroom. I didn’t feel like going at all, but I decided that it was better to be safe, rather than sorry, so once more I sat up, this time, I swung my legs over the edge, and I put my hand on a wet patch a the side of the mattress. I knew that I must have been overheating, because of the position of the duvet, but this was too wet, and not where I expected it to be. It was then that I realised my lower back was wet, and I swung my arm behind me, the bed was soaking. Not damp, it was soaking wet. Clearly, “I had wet the bed”.

I’ve always known it was a future possibility, so much so, we had been stockpiling spare sheets, each time I bought a new set for the bed. Somehow, though, I never thought it would have been like this. If I hadn’t thrown the duvet off me, I would have just kept sleeping, totally unaware of it all. But here I was, awake and wet, with a wet bed. I headed for the loo, to be sure that my bladder was empty, and to wash myself down with the wipes I carry in the bag hung on my wheelchair. It was only 4:16, I couldn’t wake Adam, not this early, but what could I do? I don’t have the strength to change all the bedding, but I had to do something, I just wasn’t sure what?

After chain smoking three cigarettes, I headed back to the bedroom. There was an old towel that I found the other day, in the bottom of the wardrobe, when I was sorting out my draws. When I found it, I didn’t have a clue, where it had come from or why I had it at all. I was so confused that I brought it out and placed it on the kitchen counter, to see if Adam knew the answer. At first, he too questions, then remembered. When we redid the bathroom, about 6 years ago now, I had spent quite a lot on a really good set of towels. We hadn’t had them a month, when Adam washed two of them, along with some black socks. They were ruined. He spent days trying to find them online, without telling me anything about it. Eventually, he found them and bought two replacements and snuck them into the cupboard. Then told me. He knew that I had not only invested a lot of money in the bathroom but also a lot of time and creativity. He also knew that I wouldn’t be amused by his carelessness. He was right, but I would have just done, exactly what he did, replaced them, the difference being, I knew where I bought them. The towel in my wardrobe was one of those, one I put there, for exactly the possibility that I might wet the bed.

There was some kind of strange thing going on here, that last week, I found the very towel that I needed to be able to sleep, and that was just what I did. There was one thought though in my head as I drifted off, I had to somehow wake around 7am, not the 8:30 that the alarm was set for. Another thing that I can’t do, I can reset the alarm. It was all down to luck. 7am on the nail, I woke. I got dressed knowing that my next task was waking Adam and facing him, while I told him what had happened overnight. I found myself feeling just as I guess my son Christopher must have done when he came to tell me that he had done the same overnight. No scared, because no one was told off, just upset that it had happened. As I said, we knew that this day would come, I have had issues with my bladder from almost the start, but that didn’t make it any easier. The sheet, towel and the two mattress toppers went through the washing machine and tumble dryer. I had it all done before Adam came home. He had set the first load running, and then placed the rest, where I could manage it from my chair.

My body is falling apart at a speed I never expect it to. Since January, I have hardly gone past a couple of weeks, without something else causing me problems. Yesterday, I posed the possibility that there is a new lesion on my spine, today, I really think, that is the issue. From my neck down, I am falling apart at full speed, and yes, I have been sat here with tears running down my face, as I have been writing this. There were none earlier, something I don’t understand. I know that Adam was ready for them, as he kept coming across to me and holding me. He even phoned half way through the morning, but the tears didn’t appear until I started to write. I can’t wait to see what it will do to me next.


Please read my blog from 2 years ago today – 21/06/2014 – There is no control

I had to go to my bed early last night, I just couldn’t stay awake any longer and I felt like I would die on the spot, well die might be an exaggeration, pass out would be much closer. Most of the day I had been struggling, it was difficult to feel anything about anything, but I guess it was to be expected following the morning I had. I was right, sitting writing did make it all worse as within an hour or so, I began to just feel like I have been all week, but the exhaustion was somehow deeper, as though…..

One day on and going backwards

Adrenaline is such a bitch! Despite having a night with almost no sleep, the best I could manage all day was to lie in my bed and worry. I quickly worked out that distraction was a far better option, so it was back to playing card games, and telling myself, how good I am at Sudoku. There is a small truth though hidden in that, distraction only works so far, and without reason, well not one caused by what I was doing, I found myself weeping for what felt like no reason. As the hours clicked on, and the time of my fate grew closer, the adrenaline kicked in harder and harder, By the time my first ever outside carer arrived, Jane, I was wired and shaking. I had flown into let’s get this over mode, one that I am sure made me appear manic and over the top.

I had planned out just how I wanted to go through this torture, every step was worked out and every item, placed just where I wanted it. I knew that this, and the next few weeks, are about learning for both of us. I say weeks, as I have two carers allocated to me, each visiting me for a week, then they change over. I found myself flying in a way I normally never do, and at first, I was sure that she was confused as to why she was here at all, but it did slowly appear. Undressing was oddly the easy bit, I do normally manage my clothes, but I thought that my embarrassment of my body, would get in the way big style. Before I knew it, I was naked and on my way into the shower. With my hair washed and the conditioner laid in big style, as I hate those knots that washing used to cause, it was then that her job really began. As soon as I stood to let her scrub the entire back of me, I found myself out of breath and with a huge desire to lie down, I was suddenly on empty.

She had been in the house for less than 20 minutes and I was still shaking all over, trying to talk without breath and wanting to start crying again. Both my body and my mind had had enough. I had no choice but to keep pushing forwards, but I felt like a wreck, stuck inside a person who had to do what was needed. Jane was great, she chatted with me and took me through all the things that I needed help with, but I had in many ways receded inside me, what she was seeing was pure bravado, but I’m not too sure if she could see through it, or not. To be honest, withdrawing, was the safest place for me, I felt safer, less set upon and if not in true control, at least letting it all pass.

When she left, I felt so odd, sitting in my wheelchair, clean and with Adam due home in less than a half an hour, but I was numb. I think it took me almost the entire evening to even find a tiny part of me, I wasn’t there and I’m still not sure where I was. I guess yet again, that I was just going through the motions, doing what I always do and heading my way to bed. We did chat about it all and even went over some of what had been said the night before. If there is any good at the minute, thanks to this, it has opened up what had been a not closed, but somewhat squashed channel between us. It is so easy to just go through the motions of life, to hide those raw things that we feel safer not talking about. It doesn’t matter how much you love each other, or how close you are, we all move into those safe positions. There is a fact that can’t be ignored, we can’t talk about my health and how I am emotionally all the time, so like everyone else, we just live. We talked, but it was only on the surface, touching the facts, not the depth of the feeling.

I slept that night like the dead. Not once did I even rise to go to the loo, sleep consumed me and I was more than happy to let it. Even when the alarm sounded, I was so deeply gone, that it took me a full hour to be able to get around to breakfast. My tremors are running wild and even now, I am still weepy. How this has destroyed me so much, still evades me. I feel like I am still somewhere that isn’t safe and I am not safe to be here. Don’t take that wrongly, there is no physical fear, it is more a fear of my health than anything else, and that’s something I haven’t felt for a long, long time. I haven’t been this raw, for so long that it feels like a totally alien emotion. I thought that when I woke, I would find myself at the start of that healing process, when the grief of what has happened to me, would have lifted to a level that meant I could live as me. Yet I am still in the depths of a very large black hole. If my body were in a stronger position, I’m sure that I would be feeling more in control of myself, it is just that everything has been piling in on me for weeks. Somehow, I have to find a way to break this and I am sure that what I need more than anything, is to find rest and a touch of normality in my life. I will get there, I know, but right now, I’ve just had enough of feeling like this.


Please read my blog from 2 years ago today – 10/06/2014 – Body rush

I seem to be suffering from brain overload today, a thousand thoughts about a thousand things and most with no connection to each other at all. It’s not new, it’s something I remember since childhood, a desire to know why, what, and who has been a constant companion, which considering the fact I have a condition that there are no answers to, is either a good thing, or a total nightmare. Questions race……