Brain buster

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……

Emotional overflow

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……

When it rains, it pours

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…..

Dumbstruck

The world and it’s dog, think of MS as a condition that affects muscles, both in pain but mainly weakness. They see us as future cripples, the people sat in wheelchairs, rarely seen without a carer and simply waiting for the day to pass. After all what value are we to the world, the cripples who can no longer work. Some look at us with pity, but most don’t look at us at all. We are invisible, long before we disappear completely by becoming housebound. I can say that, because if someone had asked me when I was 20, that is probably roughly what I would have said. Just as I saw spina bifida as people wearing calipers until my son was born with it and then died 12 days later. None of us really know what any chronic condition or disability is like until it somehow touches us. Even now, I couldn’t tell you if my Jeffery felt pain or felt anything at all, I just had to take the word of the doctors, that he was at peace in his misshaped body.

MS isn’t just weak muscles and pain, it is so much more. All you need to do is read my blog from its start to today, and you will see that there isn’t a single part of me that it doesn’t affect. Although, I do have to add that what you would read is my version of PRMS, one of five forms that MS took until recently, now there are only four. I discovered yesterday while reading on line that PRMS no longer exists, we have been absorbed into PPMS, although how I’m not sure. I’ve read the description often, and I quite honestly don’t fit. Yet, who am I to argue with the great and the good of the medical world, I am, after all, only the person who lives with it. In fact, I’ve lived with it now for over 30 years, but if you were diagnosed with RRMS, SPMS, PPMS or even benign MS tomorrow, I couldn’t tell you what lies ahead, because I haven’t lived your life. It’s not just MS that this is true of, whatever the condition, all of us would find our own quirks, symptoms, and difficulties, that’s just life though, as none of us live the same one in the same body.

At times people have asked me what is the worst thing about the conditions that I have. Yes, it is plural, I like the majority of people with a chronic condition have a collection of them. Why they travel in gangs, I can’t tell you the medical reasons, but I’d make a guess that once our bodies are weak, we are susceptible to other developing. As for the worst part of it all, well, it depends on what day and at what time you ask me. In the mornings, I am most likely to say that it’s the pain and by the evening the fatigue, catch me in the middle of a brain fog, and I’d most likely look at you stupidly and say very little of any sense. Chronic illness is a minefield filled with monsters, just waiting to take over from each other when the others have got fed up of playing with you. But if you have one, you already know this.

Today, though, my physical monsters are just treading water, the pain levels are set at normal and my fatigue just slightly higher, today, it’s the monster in my brain that is having the most fun. I have started and not finished a dozen things already, and my poor browser, has been straining under the number of web pages that I have opened, most I have little idea why. Concentration is little more than a distant memory. I have even stopped this post more times than you would believe, returning and having to read my earlier entries, and then sitting here trying to work out where I thought it was going. Even now, I’m not sure. Mind you, that’s nothing that unusual. For some reason, today seemed like the perfect day to change broadband suppliers. I had been thinking about it for a while, but out of the blue, I found myself actually doing it. So hopefully, as of the middle of next month, I will be flying on high-speed fiber and miles from the company who couldn’t even answer their phone without getting me angry and leaving me in tears. Yes, I will double check all that I’ve done when my own brain has returned.

I know that I am being rather flippant today, that is quite often the result of living in a muddle, as if you don’t take it on the light side, you’d drive yourself mad, if, I’m not already. Seriously, though, unless you are living with a brain that has been affected by something like MS, you don’t have a clue just how frustrating and depressing the whole thing is. I know that I am still managing to type out word after word and that I will appear to many as not having the slightest problem, but take my word for it, my brain is a mess. All of those wonderful tricks or the gizmo’s that are supposed to aid me in my everyday life, to me, are totally useless. It doesn’t matter what it is, my brain finds a way of turning it into an ignorable annoyance, something that doesn’t apply to me, or at least not at the moment it is trying desperately to put me back on track. It doesn’t matter if it’s a post-it note, a list, an alarm or even something huge in the middle of my computer screen, I can ignore it and totally forget ever even seeing it. Life with my brain is now one long smooth line, uninterrupted by all those annoying little things, like eating, washing or taking my meds. Well, it would be, if I hadn’t long ago started using Adams brain to fill in what I missed and of course my carers now keep me straight as well. Yet, I’m lucid and intelligent, well I think I was once, and might be occasionally now, as long as I don’t engage my brain, it will trip me up in seconds, if I let it and even when I don’t.

There is nothing in my life that annoys me more than those hoards of people who have happily brushed aside everything I have said, then try to tell me of this amazing way they know, of getting things done and never forgetting again. I learned long ago that I wasn’t only invisible, I was also mute as what I have said, was clearly unheard. Until you have spent an entire day, with my brain, in control of your life, you won’t understand, any more than you can understand the effects that pain has me, outside of the pain itself. When your brain is being eaten alive by lesions, nothing is as simple as it was just a week ago, far less a year ago. Unlike my body that now sits in a wheelchair, there is nothing visible that supports my brain. I can’t show it to you, all I can do is tell you, but then, of course, I forgot, I’m mute.

Please read my blog from 2 years ago today – 01/08/2014 – A spark of truth

I am waiting for the phone to ring, Teressa and John are due to come and see us today the first time we have seen each other since Christmas. To be far I doubt I will get a call before 12, after all, they are on holiday and as she is staying with her brother, I know last night will have included more alcohol than is …..

Independence reborn

We have a working shower!! I know that may not sound like much to you, but after not having a shower for the past 10 days, it means the world to me, at this second. I know that I only shower twice a week normally, but I really missed sitting there naked and letting the water run over me. One of my carers are due here this afternoon and she can’t arrive soon enough for me. It turned out that it was a fault in the shower, not poor workmanship on behalf of Adams pal who fitted it for us. He was really not happy about going to him and asked for what we had been warned would be £86 if it were his fault. In some ways, it does make me think twice about using any friend, even when qualified, to do work for us, if it goes wrong, I think Adam would just bite the bullet, rather than ask for the money back.

I have to say that the one thing I am looking forward to more than anything, is washing my hair. I have been using a dry shampoo all last week, but although my hair doesn’t look too bad, I just hate the way that it feels. I don’t even know how to describe it, despite repeatedly brushing it, it still feels sort of thick and full of product. Mind you, I don’t normally put anything in my hair, other than dye, shampoo, and conditioner, so I’m not used to the feel of anything else, other than clean hair. Which reminds me, I really do have to dye my hair, the number of grays, are starting to get beyond a joke. Vanity isn’t one of the things that my health hasn’t removed. There are still odd things like hair, skin, and teeth, that bother me as much as they ever did. Old age really is a pain all of its own.

This is the last time that I will see the carers who have been taking care of me for the past six weeks. My assessment period officially ends today, and Karen, the lady who organises it all will be here to see Adam and me on Wednesday morning, to discuss where we go from here. I’m really sad to see the girl who is here today go, as she is a total sweetie, but she is one of the qualified assessors and it is more an everyday carer that I will have in the future. Which of course, means that I go right back to the beginning, and I will be teaching a new pair just what I need and exactly how to do it. I really don’t like the idea as I have just become comfortable with the pair that I have. For me, it’s hard work making those connections, especially as before they arrived, I had very much been on my own. They have changed my life dramatically over a very short period of time, which I am glad of, but starting again is daunting.

I know that I have actually adapted far better than I thought I would. I honestly thought that I was going to find it far harder, as I was so used to my splendid isolation, maybe too used to it. So saying I’m going to miss one of them, is a total flip in myself. I no longer want to throw them out of the house and actually look forward to seeing them, and not just because I get a shower. It is, though, one of the beauties of being human, we are far more adaptable than we think we are. These last few weeks, not just with the carers, but including the district nurses, have oddly made me feel as though I am actually back in control of my life. I thought that I was losing my independence, but I haven’t, oddly they have given it back to me.

I know that is the last thing I and probably you expected to hear. How can people coming into your home, to wash you, or give you enema’s, possibly do anything other than take your independence away from you? Well, it can. I used to spend hours trying to do these things alone, trying to work out ways to wash, ways to do it safely and puzzling over what to do for my bowels. My life was tied up in those two small things. They were relentless questions, a dilemma that dominated everything else. Now, they are small interruptions and once taken care of, I have my freedom to do the thing I want, on my own, without having to even think about them. They are now their problems. I let them work on them, think about them and work out how to get past the problems without a second thought from me. I can go about my life, knowing I’m clean, protected and that I have medical assistance, who will come to my home if I need them. That to me is a new freedom, a new independence, that I haven’t had for years.

There is one thing that I have learned from this whole experience, you have to plan it to suit you. I have two different groups of people coming here twice a week. Originally, the thinking was to have the Nurses here three times a week, but that was too often for me, not just medically, but mentally. After the fortnight of trying to work the two together, I rapidly discovered that I don’t have the energy to manage both in one day. Even with the Nurse here in the morning and carer in the afternoon, it was too much for me. Equally, having someone here five out of seven days, was too much. I felt as though my life was dominated by it and I had no space in it for me, or to just spend with Adam. I hit on the idea of the Nurse visiting on Monday and Thursday, as I already had the carers visiting on Wednesday and Saturday. This pattern allows for life to go on and for me to recover before the next round. It is now three full weeks that we have been working this way and it works. I still have my life, the one I’ve been living for the past 7 years, I have lost the problems that were driving me mad and slowly, I have begun to feel good about it all. If their presence in your life, isn’t working for you, it is never going to make you feel you’re still independent, just trapped.

Clearly, I am finding this whole business completely the opposite of what I expected and the more it is becoming part of my life, the happier I am with the whole thing. If it were really needed, I would now be happy to accept any other help. How I would fit it in, right now I’m not sure, but I know without a single thought, I wouldn’t be frightened by it, as I was just two months ago. If you don’t believe me, just go back six weeks and read your way forward, the change you will see is dramatic. So don’t be scared if you too need assistance to live, OK I know you will, we all are, but try to remember how I have found it and give it a go. It isn’t the end of the world, it’s just a bit of change to it and when it works well, it gives you a freedom you won’t expect.

 

Please read my blog from 2 years ago today – 31/072014 – Staying sain

Last night we were just watching TV and talking as we always do and at this second I don’t remember how we got onto the subject of my blog, but we did. Adam said something so true that for once he looked as though he was about to burst into tears. I’ve never understood why painful things when said, make people do that, but I owned up to the other day, words appear and the truth of them…..