Emotional overflow

Posted on August 6, 2016 by livinginalimitedword

I found myself sitting here falling into floods of tears, for what feels like no reason. I was fine until the district nurse called, it was the one that I really like, although I can’t tell you her name, so nothing new there then. She was the one who came to see me first, to talk through the whole process of them coming here to give me eneama’s and to help me with the problems I had then recently started to have with my bladder. I have seen her a couple of time since then, but following that gap and after the news I had from the continence nurse the other day, I decided to update her. When I started to tell her about the possibility of having a permanent catheter, the tears suddenly started to flow. I didn’t expect them, as there hasn’t been a single one until then, but with the door opened, they have just kept reappearing without permission.

All of this intervention and changes that are underway with my carers, plus the feeling that I am losing more and more of my abilities to live normally, just suddenly became too much. I know that right now, nothing is definite and in many ways that in itself, is making it all the harder. Right now, I would love someone to just say this, this and this are happening and it will all be done by such and such a date. As I said to the nurse, I hate the fact that it is up to me, to make the decision as to if or if not I have a stoma. All this fiddling around with eneama’s which work sometimes and not others is starting to get to me. If it were as simple as them pushing the liquid in and I sat on the loo and everything just left my body, then great, but it’s not. Again today it failed, nothing other than a couple of tiny blobs that must have been sitting low in my guts. The bulk, the bit that has been sat there for two days, causing me discomfort and even pain, didn’t shift at all. Of course, we didn’t know that was what was going to happen when we were talking. She had asked me if I had an appointment to return to the hospital, which I don’t, I told her that as far as I knew, it was now up to me. If we didn’t get a result with the eneama, good enough to leave me comfortable, and if I decide that I can’t handle things any longer, then I will request a return appointment, to give the go ahead with the stoma. She said that she was going to check the letter from the doctor, as she said that she felt that there should be some kind of follow-up.

Having gone through all the disasters of the eneama’s failing, and the fact that I am still finding myself no further forward in getting rid of the pressure and the pain, I agreed that it was time to try a change. Although it was something I don’t really want, from the point of view of having space in my life for other things, like being me, we’re stepping it up to three times a week. Monday, Wednesday and Friday, if that fails, we’ll go for every second day, which is what the consultant wanted, but not my GP, the district nurses, of myself, who all felt that was just too much. We have to try everything as a stoma, is the final step, one that I don’t want to take, if, something else could mean I could avoid it. As I said the other day, I believe that my bowels are behind my bladder not wanting to empty, so it could be a fix for both. No, I don’t want a permanent catheter either, if it can be avoided.

When she left, I was still lying in my bed, with tears rolling down my face. It was me who told her to go, I felt able to get off the bed and to go by myself to the loo. Keeping her there, felt like another pressure that I didn’t need, as I knew she had many other people to see. She double and triple checked and assured me that if I needed her to stay, she would, but with her gone, the tears then flowed freely, without the restriction that I was putting onto myself, of not wanting to cry in front of her, for what felt like no reason. I lay there for about another ten minutes before heading to the loo. I already knew that nothing was going to happen, I had had the eneama inside me for twenty minutes and I felt nothing. I pulled myself together while I sat there on the loo and told myself to stop being so stupid. It kind of worked, if two or three times an hour escaping liquid running down my face, could be called working.

I don’t know why I suddenly feel as though I am under pressure by all of this. It’s not like anything has really changed. Maybe, it is a psychological change that is needed. Maybe, I need to start seeing my eneamas as routine, not as something that is there as some sort of demand to perform. I’m not stupid, I do realise that it is the fact that I have the final say when it comes down to the stoma, that is getting to me. I so wish someone else would stand up and tell me what to do. I just don’t feel that my mind is in the condition to make such a huge decisions, as it feels like it should be a purely medical decision, but I also see that it can’t be. The continence nurse saying there wasn’t a safe amount of time to have a bladder that didn’t want to empty, hasn’t helped either. There must be a point when it changes from safe to dangerous. I don’t want to call for an ambulance for my bladder to suddenly empty by itself when I reach the hospital, just as it suddenly let go other night. I don’t want to even have to go to the hospital at all.

The district nurse phoned me in the afternoon, as she said she would. What I had said was totally correct, the decision about the stoma is all up to me. I admitted to her that I am at this second in pain from my guts, she rightly said to me that it’s a long time to Monday, so one of them is going to be here tomorrow, to try again. Maybe tomorrow, it will be totally different. Maybe tomorrow it will work, and maybe tomorrow I won’t have to worry about all of this ever again, which tomorrow that is, I don’t have a clue.

Please read my blog from 2 years ago today – 06/08/2014 – I’m still here

Everything has to be rushed this morning as Teressa and John will be here around 11am, they are coming for lunch today as there is some show that neither Adam or I have ever heard of, but apparently has been running in Glasgow for around 20 years, that they want to go and see. It is always the way……

Making sense of my life

Posted on July 11, 2016 by livinginalimitedword

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…..

It’s still there

Posted on June 23, 2016 by livinginalimitedword

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…..

Sensations go deep

Posted on June 12, 2016 by livinginalimitedword

Would someone please cut off my hands and give me some peace! Please!! Sorry, I’m whining. It’s not like they are the most painful things I have ever had attached to my body, it’s just they won’t shut up and won’t give me even a seconds peace. I thought that the steroids would have done the trick, that today, they would have been as close to normal as they ever are, but their not and it’s not just them. You know that feeling, when you have just come inside, on a bitterly cold day and your skin is so cold, that it feels like it is on fire. Well, I have that from my elbows down to my fingertips, (worse on the back of my hands), my cheeks, lips and nose and oddly, at the top of my spine and on my front, are disks about the size of a side plate. Not so intensely, it is also inside my mouth and down into my stomach. Add into this, the fact that my eyesight is also totally screwed and I can’t see anything clearly. When I woke this morning I was so tired that all I wanted was to go back to sleep, but I had twitches so bad, that staying still was impossible, usually, lying down clamps my body still, but not even that was working. I gave up trying at 7:30 am. My body is still screaming out for sleep, I’m dizzy and I would just love to throw up. PRMS really sucks at times!

This flare isn’t showing the slightest sign of going anywhere. My doctor said if they didn’t work, that I should call the MS Nurses and see if there is anything more modern to try. I haven’t called them, but I have looked online and there is nothing. I have searched and searched, but not even the research papers showed a glimmer of hope.

Feelings and sensations don’t really sound like much, but they can be both distressing and overwhelming, especially as I haven’t had total peace from them for over a week. Everyone alive has had things like pins and needles, but in most people, they last maybe ten minutes, they’re annoying for the time they are there, then they are gone. This is far more intense than pins and needles, but try just for a second, imagining your living with them right now and they aren’t going anywhere. They have plagued you for a week and all that seems to be happening, is they are getting worse. There is no escape, nothing that will break them, even for a few seconds and you’re isolated inside this mess of constant sensation. Skin isn’t supposed to crawl, it’s not meant to be beyond alive, it’s just supposed to be there, doing nothing. When nerves are going mad like this, I have to admit, that I get scared by it. The past has shown me, that it can all too often, be a prelude to them stopping doing anything at all. This is a mirror of when I lost my hand, it too started with sensation, built to weakness and then died. For that to happen to two hands and my face, well I’m sure you can understand my fear.

Jane, my carer is due here again today, although I wasn’t even slightly aware of thinking about her coming, I suppose that there is a chance that her visit, is also playing a role in my not being able to go back to sleep. Everyone has been so supportive, so many great messages and people telling me that I am in their thoughts. I know that it’s not, but it still feels so stupid that something as simple as someone helping you shower and dress, feels so huge an event in life. I am beginning to get myself past the point of “I just can’t do this”, after all, we are three days past her first call, and I haven’t died.

In an odd way, Adam has helped me a lot with the whole process and he has done it without even knowing. Because I am struggling so much with life just now, he has been stepping in to assist me. I know that this might not make sense to some, but because my tremors are so bad, he decided on Thursday that he was going to try and stop them. I have written before about how physical contact between us is difficult, due to the pain I am in, the pain he thinks he will cause, and simpler things like the positions that I sit in and because I rarely sit still. I was in full flow of tremor that just wouldn’t give in, he suddenly slid across the settee, pushing himself as close to me as he could, then clamping his arm around me. He hasn’t held onto me like that, on the settee, for what feels like a really long time. I have to admit that at first, I was really uncomfortable with it. Not because of how he was holding me, but emotionally. It has been a long time since he has done such a thing, that anyone has really touched me, outside of goodbyes and goodnights. Physical contact in that way felt alien to me and I realised that that was part of the problem, no one has really touched me, in any way at all, for years. Outside of Adam, I haven’t even been touched by another human being for years, not even a handshake.

While we were sat there, things started to click together in my head. Without a doubt, I know the biggest thing with Jane coming here, is my loss of independence, but it was also followed abruptly, with the fact that no one has seen me naked, or even semi-naked, touched me or been involved in my life, outside of Adam, for as long as I have been housebound. Just having Adam holding me, opened up things I didn’t expect, and showed me, just how much I have really been isolated. As we sat there, I felt myself putting all of this together and I understood, even more, why I have been beating myself up, stressed to the max and so uncomfortable with this new phase of my life. Being showered by someone, brings together all those things I haven’t been involved in, or felt for years. Understanding is always the first step in living with anything. We have to understand before we can accept anything.

I’m not at ease about today, but I am far more at ease than I was on Wednesday. If I felt well, then I don’t think that today would be half as bad as the last visit, I just feel so bad and that is something I can’t change at all.

Please read my blog from 2 years ago today – 12/06/2014 – Somethings don’t change

It is only, 7:27am, extremely early, well it would be if I hadn’t been awake since just after 3am. I woke again as I did the other day with mad sensations, throughout my entire body, not painful, but when your skin is alive and burning, sleep doesn’t come easily. I did try, in fact, I lay there for half an hour before getting up for a cigarette in the hope that just being upright and moving would be……

Facing facts

Posted on June 3, 2016 by livinginalimitedword

Putting on make up is something that I don’t do a lot, well when you’re housebound, there aren’t a lot of people to see you. Before anyone says what about Adam, well make up is one of his pet hates. He constantly mentions it when we are talking about women on TV, so my laziness doesn’t bother him. I actually find it quite funny, as he constantly comments on skirts being too short, tops too tight and faces caked in makeup, as all of those things, could have been said about me when we met. Sorry, I digress, when I was putting on a fine layer of powder and some eyeliner, about all I can manage these days without making a total mess of it, I made a horrific discovery. I had brought a small mirror here to my desk so that I didn’t have to stand in front of the bathroom one. Placing the mirror on the desk, meant that I could see the underside of my chin clearly and what I saw was highly depressing. So OK, yes, I had sort of noticed in the last year the first sign of jowls, something most women feel depressed about as it shows we’re aging, but I quite honestly hadn’t expected to see them so soon. The mirror showed me quite clearly the sagging that has started to show in my neck.

All my life I have looked young for my age, and although I had seen some signs of premature aging in other places, this one really upset me. I quite honestly couldn’t really make any sense of it, why there and why now? Not being able to walk and really exercise as I used to, well, I accepted the rest of me not being exactly toned. Then I realised the horrible truth, it isn’t just my body that is no longer exercised, neither are any of my facial muscles. Being housebound for 9 years has a side effect of my not talking very much, add in the fact that I don’t eat that much, well all those once toned muscles are heading south. It appears I have discovered yet another side effect of being housebound.

This, though, I believe I can fight back on. I may not have the energy to lift weights, but surely to God, I can manage some facial muscle exercises. I mean how tiering can it honestly be, just pulling faces for a ten or so minutes every day. Trust me, it is amazingly knackering! I honestly don’t think, that I had hit the two-minute mark when I started to sweat and feel as though I had just run around the block. Every time I tried to move my face in any way, just even a smile, it hurt. Life has moved into a place I don’t recognise. Yes, I know that if you suddenly start using muscles you don’t usually, they don’t like it, but come on, your face? I guess that if I am going to have the slightest chance of turning back time, I’m going to have to start out a lot slower than I ever thought. The things that this stupid condition has done to me, go way further than the surface, being disabled, is only the start of it, and it just keeps going, and going, and going.

The biggest lesson that I seem to be learning from this process is, it never stops taking. That doesn’t mean that you can’t change some things, make some things different from the way they are “apparently” supposed to be, and it doesn’t mean that I am going to stop trying to rectify my face, of course, I’m not. If I did, well if I did, I wouldn’t be me, but sometimes it just seems so unfair and so hard to fight against. When you are first diagnosed, it is just the major things that you fear, those things that jump out of all those lists of symptoms. You don’t know how much I would like to take all those lists, off all those websites, and rip them to pieces. Over the years since my diagnosis right the way through to today, it hasn’t been those major things that have upset me, it has been the endless list of little things, my neck issues being the latest. It could as easily have been, the day I found I could no longer cut my toenails or the first time I found myself feeling totally lost, in a place that I knew, any of them will do, as all of them make a mark in your life, that you didn’t see them coming. All of them hurt, all of them mark a change no one ever told you would come.

Today I feel a hundred years old and I probably look it, which I know that I don’t. But when two minutes of using your face muscles to do nothing more than what they should, leaves you knackered, well how else am I supposed to feel. Yet life goes on and after a good nights sleep, I will feel better, maybe even younger, but I’m just a little worried that I won’t be able to smile, talk or eat. Well, isn’t that what usually happens when you over-exercise muscles, they hurt so much that you can’t even use them the next day.

Please read my blog from 2 years ago today – 03/06/2014 – Still here

I can say already that this is going to be a day of discomfort, pain, and tiredness. It’s less than three hours since I got up, but already my backside is sore as though I have been sat here all night rather than sleeping, trust me I was asleep. In fact, I think I slept well, I don’t remember waking at any point or of even having one of those dreams where you know you are more awake than asleep, as the dream is more a commentary on something that has happened at some……