When it rains, it pours

Posted on August 4, 2016 by livinginalimitedword

Yesterday, the incontinence nurse appeared at my door. I had a memory of her saying she would be back, but I had forgotten totally the date she said she would actually be here. When the doorbell rang, I was totally surprised as I was in the middle of changing my trousers having just spilling egg yoke all over them. I used the last few seconds I had before opening the door to ensure that I didn’t have my top caught up in them, something that happens frequently. Pulling up trousers and so on, isn’t the easiest things to do one handed. If I’m not holding onto something, there is a huge danger of losing my balance when contorting my body to achieve the desired results. She was here to once more scan my stomach to see if my bladder was holding onto fluid, or behaving itself and emptying. She had previously done two test, both through in the morning, this was the first in the afternoon.

I had told her when she was first here, that I found it easier to empty my bladder in the morning, as I had taken my frusemide then. She didn’t seem to get the connection, but when the drug pulls the excess fluid out of my body, I then have a bulk to get rid of. The force of the quantity always seems to make the whole process easier. Later in the day, especially in the evening, I have to spend time relaxing and concentrating on the whole process, but frequently pass nothing more than a series of dribbles. This was exactly what happened when she asked me to go to the loo, and I wasn’t in the slightest bit surprised when she found that I had held onto 198mils. While I was lying there on my bed, covered in gel, I asked her a question, “How long is it safe to go if you can’t empty your bladder?”. She seemed somewhat flustered by the question and said that she had never been asked that before. So I told her about what happened a few nights ago, I quite simply couldn’t empty it and had even been wondering about calling the district nurse for their help, as I had gone from around 4pm right into the night unable to pass anything, other than the odd drip or dribble. I had woken several times during the night as it wasn’t painful, but uncomfortable. It wasn’t until just after 4am that I had success. I was absolutely sure that it had been caused by my guts, as they were full, and they weren’t moving anywhere. She didn’t really answer me at that moment, and I admit that I was somewhat distracted at that point, as she dropped a huge blob of gel onto my just put on clean trousers.

She asked me to go back to the loo and try again, just to see if I could shift anymore, which I did. The result was I brought the stored liquid down to just 95mils. As I was sorting myself out, I asked her again about the length of time it would be safe to keep trying. She asked me to go through to the living room while she cleaned up and put away her scanner and so on, she would join me there and we would have a chat. It was when we were both in the living room, that she said that clearly down to my dexterity and the problems I had inserting them without drawing blood, something that had happened more than once, due to spasms, that self-catheterizing or what they call intermittent catheters just wasn’t suitable for me any longer. She then said that it might be time for me to have either an indwelling catheter or a suprapubic one. I had to admit that I didn’t know what the difference was. Apparently, the indwelling is a permanent catheter inserted just as the intermittent but stayed there held in place by a water-filled balloon, the suprapubic is put into the bladder through a whole in your stomach and just like the indwelling empties into a bag on your leg, or some have a valve that allows you to have say in when it is emptied. She did though what to go back to the hospital and discuss it with her superior and would call me in a few days.

To be honest, I didn’t really take it in until she left. Here was another person wanting to bypass nature’s way and take over with plastic. I could within months find myself with both my bowels and my bladder emptying into bags. I also did the exact wrong thing, I read up about it online, where of course I found all the bad things about having them, the possible infections, bladder stones, and so on, and how they have to be cared for. I also came across the horrific entry that said the suprapubic could be inserted under a local anaesthetic, which sounds horrific to me. On the good side, I wouldn’t have to wear all these terrible uncomfortable pads, as the issue of wetting myself will have been taken care of. Mind you, would having a tube coming out of me, be any more comfortable?

I do know the dangers of my bowel not emptying, especially as the last thing I need is any infection as they are bound to throw me into a flare, but all of this feels as though it is running away with me. I can’t remember when, but I know that I have written it more than once, if you invite the medical profession into your life, without a doubt, they will find something wrong with you that you didn’t expect. I invited her in when I started wetting the bed as I wanted to get the free pads through the NHS, now suddenly, I’m facing possible permanent catheterisation. A result that never entered my head when I asked my doctor to help, as I was wetting the bed.

Please read my blog from 2 years ago today – 04/07/2014 – 1 hour is changing my life

Sometimes it takes something going wrong, for you to realise that it has always been wrong, yesterday was a perfect example of that. The day started well, my new system to give me more time to myself and also to allow me to still be active online while Teressa and John were here, it worked perfectly. I did push it in how fast I was doing everything and that believe me is…..

A life changing possibility

Posted on July 27, 2016 by livinginalimitedword

Sunday turned into a trip into the past, not the distant and mainly forgotten, but the recent and as it turned out, equally forgotten. I mentioned in my last post that I was once more in pain from my guts. Having had two failed enema’s the week before, my body had done what it finds so easy, it had me once more reaching for the morphine tablets. I hadn’t realised until the evening that I hadn’t once reached for a booster tablet because of my stomach for over week, then it all began again. Just as the improvement in my appetite had taken until that afternoon to actual occur to me, I had somehow failed to be even aware of not once feeling sick or having the thought of taking an anti-nausea pill either. I have noticed this oddity before, somehow I don’t notice the improvements, but I certainly notice when they disappear. I have to admit that I find that really peculiar. Surely when you have been longing for four years to be rid of the pain, when it did actually go, I surely should have been overjoyed. In fact, I didn’t even notice it happening, I just settled into my new normal and got on with life.

By the time I went to bed on Sunday, I was once more in pain over my left kidney and I hadn’t been able to empty my bladder since 5pm that evening, not even a dribble. My bowels were so overfull, that they were causing me every symptom I have ever had from them, all in just a few hours. I was up twice during the night, desperate to have a pee but I failed miserably until my fourth awakening just after 4 am when the first trickles managed to escape, followed by an intermittent flow that lasted just minutes. I may not have felt relieved in the way that I wished, but my mind at least found a little rest and going back to sleep was the easiest of my attempts that night.

I quite honestly don’t remember been so eager to welcome the nurses into my home as I was today, and when I told them what the previous 24 hours had been like, they told me that I should have phoned them and they would have come straight out to see me. There is little relief in finding out you didn’t need to wait for something when it was there waiting for you. At least I know for the future, as I doubt that this isn’t going to be the only time that this will happen. Despite having what felt like ridding myself of a huge quantity just after she left, I am already once again in pain. I now know where all the food I ate has been going, nowhere, just backing itself up and waiting to move forwards, once there was space and my muscles could be bothered to work. The nurses are due back here on Thursday, so right now I am going to wait and see what happens.

The rest of Monday passed with nothing of note other than another telephone engineer telling me the fault in our broadband is outside the house and once more was unable to fix it. They haven’t given up, and are still working on it, just not that evening. Throughout the evening I blamed my mood on that news, but when I woke again still tetchy and with a huge desire to snap someone’s head off, I started thinking about it in more depth. Without a doubt, I’m feeling this way because of once more being caught in this cycle of pain and internal pressure. It is like I have stepped back in time to four weeks ago. Finding my smile is actually work, rather than its spontaneity of recent days. It’s amazing just how badly one thing can affect everything about you. It’s not as though all the problems of the rest of me went away as well, that would have been hoping for too much, but it does show just how badly not being able to go to the loo, can affect our entire selves.

I know in reality we are just in the early days of getting this sorted out, and the answers are still sketchy, but finding myself back here, has opened my eyes to the choices that lie ahead of me. If the enema worked as we all expect them to, that would be wonderful, but that is only one of three outcomes I have had so far. The second is no real response that day, other than what I call the dried plug being removed, followed by a constant and steady slow loss of soft faeces and I do mean constant. It is unpleasant but does get rid of it, I could actually live with a balance between that and a proper response, but working out how to achieve either, is difficult. I know it’s about what I am comfortable with, but I have to say that a stoma, now doesn’t sound so terrible. It would mean no enemas and no more fails leading to pain. I’m not there yet, but it has moved up on the list of possibilities, from no way, not ever, to a real possibility. I do though need to give this a really good shot, but how long, is long enough to know for sure? It is a really big decision to make but until the last few weeks, I really hadn’t been aware of just how badly it is affecting me. I have for a long time been putting the blame on many of the side symptoms to completely different sources. Getting this one thing fixed, could really change my life and that’s not an exaggeration.

Please read my blog from 2 years ago today – 27/07/2014 – Back to front

Everything is wrong today, all the things that are normally wrong, some are amplified others normal, but on top, there seems to be a layer that is more wrong than I have felt it for a while. I noticed within minutes of getting up that my muscles are once again playing the exploding game, but it was once again my left side that screamed the loudest and had found a pain to travel down the…..

Which, what or way next

Posted on July 6, 2016 by livinginalimitedword

The mental overload that I have found myself within the last few weeks is becoming exhausting. Why is it, that when life finds a chink in your mental armour, it then pours in more and more until you want to scream at everyone, “Just leave me alone”. I find myself exactly where I feared when I agreed to the help of carers. Finding those glorious gaps where I am alone and life is peaceful, seems almost impossible now. Two months ago, my life was easy, Adam and I alone on Saturdays and Sundays and every weekday when he works, I was here by myself and our evenings were about us, nothing else. Now, I have just Tuesday, Thursday, and Sunday, when life is as it was, the rest, are messed up, changed and noisy with people. How can just one hour from each day being changed, feel like a total day taken over?

I know that last week was exceptional, as I was really meeting and building the picture of my needs from the incontinence service and the district nurses, but even when they were here to do my enema this Monday, it felt like my entire day was reshaped. The enema on Friday hadn’t really worked. I did warn her that I didn’t think the contents of my bowels weren’t in reach. As she squeezed in the contents of what looked like a rather large bottle, all I felt was the tip of it, then 15 minutes later the liquid starting spill back onto the pad she had supplied for such an outcome. Neither of us had really thought it out either, as although my wheelchair was to hand, I had my trousers and knickers still around my ankles. Not exactly a good move when my body was racked by tremors and we had to somehow get to the loo. Trust me, it was a journey that I wouldn’t have managed without her assistance, otherwise, my white bedroom carpet wouldn’t be so white. It wasn’t as though my bowels cleared, they just took exception to having something enter it from the wrong direction.

Until late that afternoon, that was all that happened. The hours passed and nothing other than fast journeys for small amounts of liquid. I really shouldn’t have wished for action as that was what I got all day Saturday. Every time I moved, I had to go to the loo to clean myself up. I went from nothing happening, to a slow seepage of solid that I could do nothing about. On the good side, it was also Saturday that I started to feel pressure right across the top of my stomach, a pressure that I knew all too well. Late Sunday, it started to turn the corner and if life went to my bodies normal plan, that would have meant three more days of gentle build up, them two or three days of pain, before it would move again. Normal was interrupted on Monday, by enema number two, and the wonderful relief of all that future pain being interrupted by relief. As Murdoch used to say “I love it when a plan comes together!”. Because it cleared as far as possible, there was no follow-up leakage, no pain nothing, just my body doing what everyone else does with ease. Monday also found me on a good day. When the nurse arrived the tremors were quiet and I wasn’t normal, but about as close as I ever get. That meant that once she had me safely on the loo, without either my trousers of knickers, I told her to go. She could see clearly the difference in me and was happy to follow my wishes. I think she had been gone about twenty-five minutes when I started to wonder if my choice had been a wise one.

Somehow, I had to return to the bedroom, play about with the new mega towels she had delivered (quite honestly, if you added tags, it would fit a 6-month-old baby), get redressed, locked up the front door properly, and tidy up all the bits and pieces she left behind. That whole period from her ring the doorbell to then was about an hour and a quarter, and I didn’t have the tiniest drop of energy left, twenty-four hours on, and I’m still not revived. It appears that I somehow managed to empty, far more than just my bowels.

It’s Tuesday now, that means I am alone today, this is one of my peace days that I knew so well, but every second of it so far feels, like I am working towards finding the energy for tomorrow. The morning will find me once more with the nurse, and another enema, although I doubt there is much there after yesterday’s spectacular success. Tomorrow afternoon will see my carer here for my shower. How am I going to make my way through all that, and still be alive enough to enjoy my evening with Adam? A double whammy, that right now sounds like something that is going to leave me beyond wiped out, but I have no choice, this is the agreed plan, the way things are to be until we know exactly what works and what doesn’t, for my bowels. It goes without saying that I am more than hopeful that the space between each enema in time will be expanded.

It is bad enough that I feel so out of control of my body, but to throw in the sensation that my life has been taken over and planned by others, well, it’s left me just a little numb right now. Yesterday, the chemist arrived with yet another new drug, something else for me to swallow on the instructions of my doctor. It feels right now as though all I do is swallow and breath in medications, and when that fails, the nurses take over and insert it where I can’t. If anyone can think of any orifice they have missed, well please keep it to yourself. I always thought that our bodies were supposed to carry us through life and to bring us pleasure along the way, life now is all about medications, just to make it work at all. That pleasure piece, well, it’s still there when there is the time, just a little harder to find, and far less fun than I remember.

Please read my blog from 2 years ago today – 06/07/2014 – Some scares never heal

I feel that bit more under control today, not as lost and as though I am grasping at anything in my mind to keep me in line and still moving. It’s mad how something you knew, but didn’t want to hear, can really through you into the worst of muddles and make you just want to stop the world in it’s tracks for a while. I would even go as far as to say that my determination not to be beaten, is returning, not in the angry…..

In search of help

Posted on June 27, 2016 by livinginalimitedword

I’m trying so hard to move forward, to accept what has been happening in the last couple of weeks, but I still feel overwhelmed by it all. Every time that I open my mouth and hear myself talk, I just want to cry or scream, depending on the moment. I quite honestly don’t think that I have said more than five or six words recently, without a stutter or forget what I’m saying. It feels like someone stole my brain, but I’m not even sure that I want it back, well, without it, I probably wouldn’t feel so bad about the rest of it. I always knew that the day would come when I would lose control of my life and my body, but I didn’t expect it to all happen in such a short period of time.

If wetting the bed, forgetting and sounding like a fool all the time wasn’t enough, I have developed so many twitches and tremors that not even lying down, brings me peace anymore. Until now, although I knew my legs could melt from under me, I now have the added joy that they simply give up and fold. Something has happened around the muscles in my leg joints, at times it feels as though they simply won’t lock, and instead, shudder and hesitate, unsure whether to hold me or collapse. Before I never really felt scared of standing up, I have everything arranged in the house so that even if they melted, I was safe. Now, bang and they’re gone. The worst of it, though, is my arms are doing the same, I can’t even trust them to catch me. It really feels like every muscle in my body is plotting against me, and there is no way of getting them back. If you thought that the UK was having political problems, it is nothing compared to the fight going on inside me.

For five days now, I have been drinking Furosemide in an attempt to get rid of the fluid that has been collecting throughout me. Five days on, well my hands are perfect, my legs not too bad, but my feet, well they are still swollen, not as bad as they were, but they still aren’t my feet. Standing, when I can, is still painful and please don’t touch the tops of either of them, as that’s real pain. The really good thing on the fluid side is, I’ve had three clear night of not wetting the bed, but I don’t want to say that too loudly. I never thought in my life that my first action on waking would be to slide my hand under my bum, to check the moisture level before I move, but that’s yet another addition to my life.

Normally, I am really good at getting my head around things, to find a way to making it all fit and slot as just another part of my life. Right now, there is so much and so many different bits and pieces that I don’t really know where to start and even where it will end. The sheer volume of change is totally defeating me. Don’t get me wrong, I’m not slipping into depression, it’s more that I’m slipping into an exhausted confusion. I just so wish that I could have a single day, or even half a day without something dramatic, exhausting or upsetting happening. I long to wake up in a dry bed, for the internet to work smoothly, without annoying phone calls, or no people ringing the intercom, who just want me to let them in, but it’s not for me. For my fingers to understand how to type, for the tremors not to take over and sheer rubbish coming out on the screen. I want to not feel sick, to actually want to eat the food I fetch, without discovering that I’m no longer hungry. If I am, I would just love to be able to eat it without my throat hitting spasm mode and making it all too difficult. All I want is for my day to start and end as days use to. Then, I might just have a chance to turn my mind to accepting any of what I need to work through. I don’t have the time to even think about it, far less work on accepting it all. Is normality, really such a huge thing to ask for?

When just over three weeks ago, I phoned the Doctor to say that I was in a flare, I thought a few steroids and life would settle back into life. I didn’t have the slightest idea then, just how wrong I was. I have never had a flare like this, as in the past, it has been one thing, a lost arm, not being able to breathe and talk, always isolated to a set or group of recognisable nerves. I didn’t even expect a flare could take over my entire body and screw it all up. I’m feel lost. All too often, I find myself just sitting here, trying to work out what next or even how I got here. I have no answers, no idea how to fix all of this, or if this is it for the rest of my life, nothing but new things going wrong, one after another. I have to get some kind of control, some sort of acceptance and understanding, but I don’t know where to start. If you have a clue, well let me know, as I’m totally lost as to what I do next.

Please read my blog from 2 years ago today – Seeing it clearly

I think I have broken through the worst of this phase of uncontrolled muscle tightening, I sat last night on the settee without constantly having to put my arms into stupid positions in a hope of stretching the muscle to the point they would give in. It was totally motionless, I still did it occasionally but that was the big thing it was occasional not constant. So far the morning hasn’t been too bad other……

Could there be more?

Posted on June 18, 2016 by livinginalimitedword

I sat last night on the edge of the bed and tried to talk to Adam about what the doctor had said to us when we were at the hospital on Tuesday. I was hoping that he would be able to see it from another angle, to give me something to work on, or believe. I tried putting my understanding of what was said in several different ways, but all of came to the same point. “That we had been told there was nothing they would do, as they weren’t prepared to operate on me, for anything other than a total emergency, and therefore, I was on my own. It wouldn’t matter how bad things got, how much pain I was in, or anything else. They quite simply wanted me to take more and more Morphine, to try and cover the pain, until I died.” He annoyingly just kept saying the same thing, “I can see why someone might have taken what he said that way”, then went silent. Even when I pushed by saying things like, “Well, is there any other way of seeing it?” He just sat there silent, offering me nothing at all. I could come to no other conclusion than, he had also taken it that way, but was desperately trying not to say it, because if he did, he would then have to admit, what was happening.

This is where Adam and I are so different. I don’t have a problem with saying that basically, I am being left to die. My guts are being expanded every day because the nerves won’t push the stools through, it just compacts them until everything is pulled tight. It has become increasingly painful over the last 4 years since it started and like all skin, there will be a limit to how far it will stretch. If any part of it fails, well the issues of a perforated bowel, are something no one wants. It is a fact that more and more nerves ending die daily throughout me, the time will come when those in my gut, are diminished to a point that they won’t trigger enough muscles, to do anything worthwhile. But long before either of those things happen, I am going to find it increasingly hard to breathe. I already have problems thanks to the pressure from below, pushing upwards on a weakened diaphragm and lungs, which have their own issues with dying nerves. It doesn’t matter what the doctors want to do or not, I am dying. On Tuesday, they just added another way that it might happen, that I hadn’t quite grasped. So Morphine, here I come.

I had thought that Wednesday was going to be just a day. The carer was due here to give me a shower, but having got through last week, I was feeling much better about the whole thing. I haven’t exactly been thinking about their visits, but slowly, whenever I found my thoughts in their direction, I was gradually feeling calmer as the days ticked on. Even when I started laying out my clean clothes and making sure all that was needed, was on hand for her arrival, there was calmness that was totally missing from last week. I guess that our brains work on these things without us even knowing. As the day ticked on, I have to admit there was a slight apprehension that grew, but it was just slight. I kept myself busy as always, but as 4 pm arrived, so did my first attack of nerves, nothing over the top, just enough to know it was there. It wasn’t until much later when Adam came home, that I found the perfect example of what had been happening to me between 4 pm and her arrival.

Adam is the sort of person, who if he is expecting someone to call, reacts to almost every sound from the road outside, by standing and staring out the window, to see if it is them. Clearly, I’m not going to keep going back and forward, I’d be exhausted, but I still do the same sort of thing internally. So here I was, sat here, winding myself up every few minutes and being ready to head to the intercom to let her in. I waited and waited. 4:30, 5 pm, 5:30 all came and went, and no sign of her, just me getting more and more stressed. Then the front door opened, 6pm and Adam was home from work. He took one look at me and knew exactly where I was, on the point of tears. He made a phone call, but only managed to get connected to an answerphone. Adam was furious in front of me, but when at 6:30 the doorbell rang, he became his usual amiable, jovial self. Two and half hours late and there was the carer as though nothing had happened. She said that she hadn’t been told about the need to be here at 4pm, but I found that hard to believe, as Jane, the carer who was here last week, knew all about it. By that point, I was so tired, so wound up and totally unable to even think about going in the shower, help or not.

Adam eventually spoke to someone at their office on Thursday, and they too said that the stress on timing, hadn’t been passed on to them. They have also reassured him that this will not happen again and that I will be seen as near to 4pm as possible. All we can do is wait and see what happens, but right now, I’m not exactly filled with optimism.For weeks now, I have been searching for the point where life will just feel normal, not stressed, not tied up in things to do and I can just have what feels like a restful day. Somehow, I don’t see that happening anytime soon.

Please read my blog from 2 years ago today – 18/06/2014 – Home to Mother

Teressa called last night to let me know that she and John will be here at the beginning of August for a week. I guess we will be able to spend quite a bit of time together as unlike Christmas the rest of the family and friends in Scotland will be working. She always sounds so happy these days, not like when I would hear from her when she was married to her first husband, then she always sounded…..