Tag Archives: spasms

Brain buster

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They say when you watch something, it never does what you’re looking for. Well, mine eventually did. I’ve been staring at the phone on my desk, willing it to ring, for the incontinence nurse to call me and let my know what her boss said. When she did, you would have thought that she was reading out the results of some sort of competition, giving me all the points that they took into consideration, before just telling me what I wanted to know. They have looked at all the scan results and my history and present problems, especially those being caused by my intestine and bowels and for now, they don’t think that I need to have any form of a permanent catheter. What they want me to do is to be careful to be sure that my bladder is as empty as possible whenever I go to the loo. This means that I have to double void each time. For those who don’t know what that means, I have to stand up and move away from the toilet for a minute or so, then return and try again. I also have to use a method I have already been using for years, to rock gently side to side and back and forward, which as I knew already, makes the urine move out of it’s hiding spots and out of me. They believe that if I continue to do this, I should be alright until the problem with my bowels is sorted, when hopefully, the problems should lessen. She once more added that if I do find again that I can’t empty my bladder, then I must call for medical intervention immediately.

I didn’t tell her, but when I spoke to the district nurse on Friday, I had talked through with her, the reality of implementing her final point. She was just as I dumbfounded by the idea of calling 999, within minutes of finding I couldn’t empty my bladder. We talked it over and quite rightly she agreed with me that that was just not a viable plan. I can with ease sleep for 13 hours without once getting up to go to the loo. Therefore, my bladder, nor I, am in any type of danger for that length of time. That is, of course, as long as I am not in severe pain. As she said, I’m not stupid, I will know in myself if I need help or not, but maybe that guideline of 13 hours, should be my max. I am also not stupid enough to leave it any longer than that, as I am well aware that urine can turn toxic to my body with ease. Which is a problem for anyone, but for someone like me with a compromised immune system, something I need to be careful about constantly, hence the double voiding. Should I feel at all that I need help, then I should call NHS 24 or my doctor for help. There should be no need for me to be dialing 999 unless I know something is horribly wrong. Both NHS 24 and my doctor would be able to send out a district nurse armed with a catheter to my assistance. After that, well then we can talk it all through again and possibly include a detailed chat with a urology consultant.

I have come to the conclusion that the continence nurse who has been coming to see me, just likes to scare people. There was no need what so ever for her to have worried me the way that she did. She could quite easily have left here without saying a word about permanent catheters at all. Returned to her place of work and talked it through with her boss, then telling me, exactly what she did, when she phoned me. If she had done that, then I wouldn’t have landed up feeling as I did and I would have had a much better end to my week. I have learned one lesson from all of this, should I see her again, I will not let myself be wound up until she has checked her “thoughts” with someone else first.

I have to admit that I have been lucky and I haven’t come across many like her. On the whole, the medical profession has always told me their thoughts, but done so in a way, that it felt like they were imparting information, not telling me that there was no other option when there was. Just like the consultant who I saw about my bowels, he laid out all the possibilities, what they could and they couldn’t do and what they thought needed to be explored first, hence the enemas. Even though I left there knowing that this was the last possibility, but at the end of the day, if I couldn’t cope with it, the final option was down to me, I could request a stoma. When I left there, I felt a little shell-shocked, but I didn’t feel as though I had lost control. In fact, it was the total opposite, and it left me with a new problem, when and how to make that decision, and I still don’t know how to do that.

It took me many years to realise that the medical profession doesn’t have all the answers. What they have are possibilities. In an emergency, they make the decisions for us, but when it comes to those things that aren’t going to kill you in the next ten minutes, the choice suddenly becomes ours. No one can do anything to you without your permission, that’s clear as you always have to sign those disclaimers, but there are times when you want them to tell you, not suggest to you. About three years after I was diagnosed, my health was so bad that my Neuro offered me chemo. It was all explained to me, how it would affect me and most importantly, what they expected it to do for me. What they were offering me, was a way of turning back time, they could say how well it would work, or if the results would be long term, or just short, but it was the only option there was. To me, that was an easy choice. Without it, I was heading downhill so rapidly that I would have been a vegetable long ago. It didn’t feel like a choice, it was a no-brainer. Everyone wants to live, to be able to function as a person. I wasn’t going to say no, if I had, I would have hoped that they would have sectioned me and done it anyway. Where I am now, is totally different.

If the enemas work properly, they will not only move the faeces out of my body, but they will remove the pressure and pain that I live with daily. The short spell I had last month when it appeared it was working, I found a new appetite for food, I could breathe with far more ease and both the pain and pressure were gone, even my mood improved. It was wonderful. Now, we’re back at the start, it is as though none of it ever changed. If I have the stoma, well it removes the problem of getting rid of the faeces, and hopefully the pressure, but there is no guarantee it will change the pain in any way. The pain is caused by my nerves and removing them and my intestine, might not change the pain at all. I will also spend the rest of my life with a bag attached filled with poo. How do you choose?

This week, we’re stepping the enemas up to three times a week, if that doesn’t do it, I could have them every second day. How many weeks or months is a fair trial? What if they never give me the result that I want? Am I asking and expecting too much? When do I say enough and if I do, will I be any better off? This isn’t a no-brainer, this is a brain destroyer.

 

Please read my blog from 2 years ago today – 08/08/2014 – The small things

Once again I crawled off to bed at 8:30 and slept all the way through, which of course leaves me with a problem as to what my new drug routine is doing, as every night I have taken my drugs later, I have gone to bed early. Now that doesn’t make any sense to me at all, surely not taking my drugs should make me want to go to bed later not sooner, as I have shifted my routine and once……

Mentally unfair

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When you are by yourself, as I am, day in day out, it is incredibly easy to take things to heart. What I mean by that, is that when someone says something perfectly innocently, it is heard or read in a totally incorrect way. When you send as many tweets as I do, or write as much, it’s not really surprising that from time to time, I completely innocently upset someone. It is even more likely to happen when your main audience is those with chronic illness, including those isolated as I am, by being housebound. When you are feeling down, are in a lot of pain or feeling more alone than normal, well we all take things in ways we normally wouldn’t. It used to be something I did a lot until I started to realise that I was just being precious. Then there are the times when I have suddenly found myself face to face with those I have upset, well, as face to face as the internet allows, and trying my best to sort the whole terrible mess out and often making it worse. The result is that now you wouldn’t believe the care that I try to take when I write anything, beyond a, “thank you” or a “(((hug)))”.

It is amazing just how much our moods are affected by what is happening to us at that second. As I said, I have frequently thought that someone was being either really nasty or far too personal for comfort. If you are like me, someone who has only come to social media since I became unable to work, understanding just how 140 characters, (as on my pet favourite Twitter only allows) can skew the real meaning with ease, takes time. Reading what isn’t there, is beyond easy. In the first year, I lost count of the times I found myself sitting here feeling wounded, but for some reason, I’m not the sort of person who makes a fuss about it. I just sit here quietly hurting, and actually making myself feel far worse than I did before I read it. It is easy to say, just take it with a pinch of salt, but when your body is racked with pain and you’re looking for an escape, not persecution, it’s sometimes hard.

Our bodies have so much to answer for, being in chronic pain is something that you get used to, but when you’re having a bad day, it’s affects us in ways we don’t expect. Without a doubt, I know that I, and probably others, wouldn’t bat an eyelid at any of those silly things that turn into that straw that breaks us. I’m using social media as it’s an example, as it one that I know for sure, we have in common. It could just as easily have been something on TV, or that our partners have said, whatever it is, I’m sure you can all sight your own examples. It’s easy for us to understand what is happening when we look back, but others aren’t always that patient. Adam has told me that he has often dismissed all I was saying and how I was doing so, because, he knew that that day, I was in pain, although I was totally unaware of my error myself. Those online can’t see me, don’t know me, and some often don’t care. So like so many things in our lives, it is us who have to take the care, choose our words, and our subjects, with others foremost in our minds. Our lives are so complex and as much as we like being around people, they don’t half make our lives harder.

Chronic illness steals so much from us, and for some of us, our patience is just one of them. I have to admit that I have over the years went through spells of hiding. I know that sounds odd to some, but when you’re struggling and you know that you have recently upset a couple of people, even when for the life of you, you couldn’t see how, it just feels easier to avoid them all. If I have hidden away, I know for a fact, that that means there will be others out there who have done just the same. If blogging has taught me one thing, whatever we have done, someone else out there will have done it as well. The one thing none of us should be doing is hiding. People don’t understand what is going on in our heads. They see our illnesses as physical and never take into account that the mental impacts can be huge. Just because most of the time we handle things well, doesn’t mean that we don’t have our off days. Every spasm, every time that we find ourselves with our arms too tired to push that wheelchair another inch, our mental state changes. It affects what we say and how we say it, and because we are so tied up with ourselves, we don’t always notice it and we can’t tell you, we don’t mean it.

We are tested in ways that the able-bodied and healthy will never understand. What our bodies do to our brains, especially our emotions, is something I know I didn’t understand, until I found myself here. It is only those closest to us who see it, feel it and know how to handle it. Our lives are nothing like they once were and this is just yet another example of how screwed up it becomes. So if I do at any time accidently hurt you, I’m sorry, and if you do me, well, I promise to understand and just brush it away.

Please read my blog from 2 years ago today – 29/07/2014 – Unable to stop

I am in one of those “I just can’t be bothered moods”, not normal for me I must say. In fact, I don’t remember when I last had one, I just want to do nothing, not here online or anywhere else, I just want to curl up and disappear for the rest of the day and worse still, I don’t know why. I hate this, I know some……

A life changing possibility

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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…..

Seeking freedom

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For weeks I have been struggling to make the way from one end of the day to another, without feeling under constant pressure. It felt as though I was chasing my own tail all of the time. So to be sitting here at 11:30 in the morning and to be able to say that I have done everything that I have to, and I even spent the last hour playing games, it seems unbelievable. I can’t even start to explain just how it makes me feel, as I now have time, to do what, I don’t have a clue yet, but as this is my third day in a row where I can say this, I clearly have time to myself again. Today, even the Nurse has been and gone, something that probably is helping tremendously as I’m not waiting. Waiting has to be the worst thing in the world for that pressure sensation to feed off. When you are just waiting for the doorbell to ring, time turns into the longest string of pain there is. I know that the district nurses don’t work to my schedule but must work to their own, so all I can do is accept things as they are, I just wish I could ask them to see me first every day.

Writing that paragraph just had me scurrying out into the hallway. When the nurse left, she did so with me still sat on the toilet. She had done just as I asked her too, to shut properly the inner hall door, which has a yale lock on it, and to pull over the storm doors so that when I returned to the bedroom to get dressed, should someone be out there, they wouldn’t see me through the glass panel, passing half naked in my wheelchair. When they left last Thursday, I totally forgot to lock the storm doors and just returned to the living room to get on with my day. About an hour later, Adam came home to find the house unlocked. He is always reminding me about security, to make sure that I don’t let anyone in on the intercom that I don’t know, and so on. The second I heard him enter, I remembered I hadn’t locked the door. To be fair, it was me who mentioned it not him, but I felt really bad about forgetting, not so much because of Adam, but simply because I had forgotten. I even told the nurse about it just before she went today, partly as a way to make me remember. I forgot again. The door is now locked and luckily, I actually also needed to return to the bathroom anyway, so no real waste of energy. Clearly, I need to come up with something to remind me, otherwise, well the future may well find the door unlocked more than secured.

In the early hours of Sunday, I woke needing desperately to go to the loo, but as soon as I moved myself to the edge of the bed, I knew something was wrong. No, I hadn’t wet myself, but I was in trouble in a different way, the tremors were back. I had been so sure that they were down to the lack of potassium that the doctor had detected, yet there they were, both arms and legs dancing to some mad tune of their own. As I sat there in disbelief, it was clear that my body was alive in its own mad way and that getting to the loo was going to be interesting. When my arms are dancing like that, I seem to find it hard to push my chair in a straight line, bumping into doorways is a standard issue. It was just like I had jumped back six weeks and I feared that it was all starting all over again. I went to the loo then headed to the kitchen, not just to have a cigarette but to spend a little time, just gathering my thoughts. Sitting there made it totally clear that my body was dancing wildly, and I was feeling terrible as well. Despite that, as I sat there I was also finding it really hard to stay awake. Sleep was drowning me and body dancing or not, I needed to return to bed.

I woke on Sunday morning to the alarm, still exhausted but with a body that was at ease and without the twitches. I looked at the bed, but apart from the fact that the duvet was all untucked, every sign of my night’s activity was gone, but even Adam noticed that I was tired. I was a lot quieter than normal and holding on to a great desire to return to bed. I can’t help wondering if my arms and legs had been active all night, as my limbs were both sluggish and heavy, just as they are when I have done too much during the day. Whatever had been behind the tremors, it had gone during the day. Today, once again, I am tired and my limbs are again heavy. I am beginning to wonder if the potassium really was behind the tremors at all. Yes, I think it aggravated them and made them more active during the day, but their antics the other night has made me aware of them again. It’s hard to tell what is going on, but as always, there is nothing I can do about it and all I can do is wait and see if they are going to happen during the day again as well.

Even though it is Monday, Adam isn’t coming home for lunch, that is unless he wants to. This is another thing that my new mini fridge has brought to our lives, Adam has his freedom again. My lunch is sitting waiting, all prepared by me this morning on the top shelf. It makes me wonder if with some thought, that there might be some other gizmo’s out there, that could change things just as much. I know that he likes doing things to help me, but while we can, I really do want to give him as much help and freedom as possible. We had a taste a month ago, just how dramatically our lives can change, overnight. It took us a month to sort it out and this time, we were lucky that there were ways of making life still work. We might not be so lucky the next time. Clearly, this is the time to look for those answers, before the problems appear. There are things already that I can see as minor issues, that could quite easily turn into major ones.

The biggest one is actually being caused by one of the answers to my incontinence, how do I manage to put the pads on and pull up my clothing, if my legs get any worse. Right now, I can still stand long enough to manage it, but what happens when my legs get worse, which they will. I can pull up my knickers and trousers without standing fully, by taking the strain on the grab rails, but the pads are fiddly. They need holding in place with on hand while standing, then using the other one to ease my knickers over them. Even then, I often need to twist and pull at them, which can’t be done while sitting, otherwise, they twist and ruck. How do you do these things when you can’t stand at all, or for less than 30 seconds? If anyone out there knows the answer, please tell me, as I have been thinking about it a lot, and I can’t find it in my own head at all.

 

Please read my blog from 2 years ago today – 19/07/2014 – Able and willing

I’m not quite with it today, my mind is tied up with one of Twitters strange blocks and like any puzzle I come across, I just have to pick away at it until I find the answer. I have always been the same, I hate anything that I don’t fully understand, I suppose that is part of my insistence on understanding my……

Which, what or way next

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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…..