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……

Fiddly bits

It is very easy in life, to just get comfortable, with things in our homes and lives and never even think, about changing them. Sometimes it’s because we think we have found the best there is, and at others, we’re just comfortable with what’s there, yes, it might be tatty, but it’s doing its job, so why bother changing it? I had for a while been intending to buy a new sleep mask, but for some reason, I just kept forgetting about it. The one I had still blocked the light, it was just that the edges were fraying and the elastic had turned rather slack, after months of use, it was overdue replacing. I had been so impressed with the one I had, I didn’t have the slightest doubt about buying an identical one. I wasn’t looking for it, but I noticed that some packs came with a free set of earplugs. I’ve tried many different ones, and although similar, these were a slightly different shape, from those I used, so worth a try, especially when it wasn’t costing a penny. They arrived yesterday and when Adam came home for lunch, he opened the package, which was once again beyond me. I understand that packages need to survive the postal system, but do they really need to be so tough? Who do they have working in the Post Office these days, gorilla’s with extra long nails? Once open he switched them over for me. leaving the new ones in place and ready to go when I went for my nap. Boy, what a nap that was. I couldn’t believe how I never heard, even the muffled sound of a single car, and the fit of the mask was so comfortable, I was simply stunned by the difference. I have to say, it has made me start wondering about some of the other rather tatty looking objects I use daily, simply because I always have, maybe, it’s time a few of them were changed as well.

It may have given me a great sleep, but it didn’t do anything about the pain I was in yet again from my stomach. I really am beginning to believe that half of what is wrong with me is coming once more from my guts. Clearly I’m guessing, but if I am in pain all night, the fact that I am waking up, uncovered or squashed into corners, says that I probably am, I won’t be getting a good nights sleep. Yes, I’m asleep, but what I am questioning is its quality. During the day, I am constantly on the move, twisting and turning, in an attempt to let whatever is inside me, to pass the area it’s causing pain in. It would be a miracle if it wasn’t disturbing me in the same way at night, which would explain, a whole list of things that have been happening recently. Just over a week ago, I made a new batch of Psyllium pancakes. I had deliberately made them slightly bigger so that I was getting a large dose from each one. Over the previous month, I was having to eat two instead of one, just to make things move at all, proving that in that batch, the dose was too small. On day 4 of eating the new ones, I went to the loo without any problems. Then again on day 5 and 6, on day 7 I suddenly found myself going twice in one day, something that is totally unheard of for me. Then yesterday, once more my bowels moved first thing in the morning, followed by even more intense pain. If I had been passing tiny quantities, I would be just shrugging the whole week off, but I haven’t. Granted my stomach looks a much better shape than it has in ages, but the spasms, are just never stop. It is as though my insides had been storing up far more than I thought was there, especially when you add in just how little I really eat.

Last night, I actually did wake up due to the pain, so I am reasonably sure that I have found the culprit for my increased tiredness. It’s over two weeks now that I have been feeling over tired, but, it is almost the same length of time since I started to have, increased pain from my guts and started feeling tired. The early stages were probably from the build up that wasn’t shifting, now, it’s because, it is. What I am not sure about is the dose of the Psyllium, do I continue with it just as it is, or do I reduce it? If I reduce, it may just slip back to not moving, if I continue as is, the pain may just continue as well. It’s a difficult one, but I think that I need to continue for another week at least, as I may just be getting used to the dose and it may just all settle down, now that the bulk of the work is actually done. In a way, it is totally my fault. I should have acted quicker last month when I first noticed that the thinner smaller pancakes weren’t working. But I just persisted, as they were the ones that I had made, and they were the ones, I was going to eat. I am so used to my routines and my systems, that the whole idea, that I had got that batch wrong, just wasn’t computing. I just continued in a blind belief that eating them anyway, was fine. I wasn’t going to waste them by throwing them out and I wasn’t going to waste any of my none scheduled time, in making another batch. I already begrudge them the time they take once a month, after all, my body is supposed to work without them.

That is an easy trap to fall into and this isn’t the first time that I have. I have to admit that, that, is a large part of the reason I don’t use my catheters. Somehow, that whole idea that I have to intervene to just to get my body, to do what everyone else’s does without thought, is wrong. I have managed to get my head around so many aspects of my health. I have accepted so much, but to actually physically intervene with my internal workings, feels like one step too far. So if I have to, then it has to simple and fast. Catheters aren’t, they also hold a huge embarrassment factor and a few other issues I’ve written about before. The fact that I have to make pancakes, and I really do now need Adam to help me as well, makes them an intrusion, something that being comfortable with, is really hard. Any idiot can be comfortable just swallowing tablets, me included. But having to go through a once a month ritual of 5 hours work to make those pancakes, to remember to defrost one every day, then to cover it in a fine layer of jam, and make yourself eat it, despite the odd flavour, is wrong. I do it, but it’s wrong and I’m not going to get through a batch quicker, or throw out a batch that’s not right, as I would then have to find another 5 hours to replace them. My body is demanding, so much care these days, just to do the things it once did by itself, and I’m not good about caring for me.

Tablets, inhalers, nebuliser, Pysillum pancakes, wheelchair, mattress elevator, shower seats, pressure mattress and cushions and all the other things I can’t think of at the second, they all push their way into your life. If they are there, like a mattress, no problem, I don’t think about it, I don’t even register its existence. But those I have to think about, that I have to interact with, they wear me down. Not going out, not being able to work, not having the opportunity to live an average life, spending that life in pain and housebound, without a memory and without all the things I once loved, unable to do all the hobbies I once loved, I can live with all of that. That is all easy, I accept it, work with it and make the most of all of it. Just don’t ask me to use a catheter, to find the time to make pancakes or to enjoy using a nebuliser. I don’t want them in my life, I don’t want to have to give time to them. I just want to keep being me, without all the fiddly bits. Without all those annoyances, well I could live forever just as I am, but the more and more things that I have to do, to keep this body going, the less I enjoy things. All I can do is, to hope that no more gadgets are foisted upon me, as I think I might just tell the doctor where to stuff it, regardless of their so-called benefits.

 

Please read my blog from 2 years ago today – 08/12/2013 – It’s gone again

Half an hour ago I knew what I wanted to write about today, but I was doing something else when the idea appeared and I stupidly didn’t keep a note of it, I just kept working away in the stupid….

Spreadsheets and fear

Yesterday took me over 2 hours longer to get through my normal writing and twitter activity and all because I can’t type or trust my fingers to be where I think they are or to do what I want them to. At first last night I thought my hands were a bit better as I wasn’t subconsciously massaging them all the time, then I realised that it was because my legs were worse than the night before and my attention was centered there. To be honest I think that happens a lot, one thing annoys me more than another, so it is that I focus on, it isn’t that the other things are better, but just lower on the scale of importance.

When I first moved over to the settee I actually couldn’t sit comfortably, for a change it wasn’t my legs but pain low in my pelvis and after a few minutes I realised what was causing the pain, I hadn’t been to the loo in the last 12hours. My bladder was screaming out in pain. It is one of the things that happens to the majority of people with MS, our bladders don’t give us the right signals and they frequently don’t empty properly or more embarrassingly they will decide to empty regardless of where you are, with no warning and no ability to stop it. I have a bladder maintenance system that I have to say I totally ignore and normally manage to get along in my own way. If I did all the things I am meant to for my MS, I would spend more than half of my day just working down lists. I don’t advise this approach, it is my choice and I know the risks I am taking, but I look at it from the point that I am still here and spend less time in hospital than many, so I must be doing something right. When your bladder is that over full the stupid thing is it just doesn’t want to empty, the only way to manage it is to catheter. I think that you also stop producing urine as I always seem to go a lot more over the next 24hrs, I have just been to dispose of a huge quantity for the third time this morning. Believe me thought when it happens and the pain starts, it is a pains you want rid of. The starting point of low in my right side of my pelvis is an incredibly sharp pain and as the fluid levels fall the same pain spreads further out to the right and up towards my waist. The pain increases as it empties and for the next 15 to 20 minutes afterwards, it punishes you for being so stupid.

I really believe that there isn’t a patient alive with any chronic condition who actually does all the things that the NHS spend money on telling them to do. Yet while they harp on about managing your condition, I am also sure that every one of us start out doing everything we have been told, to the nth degree, then slowly bit by bit, cut corners, shorten, dismiss and then eventually stop, doing what we have to at the minimum level only. It is all to easy for them to type up their sheets and booklet, to give us advise, but I wish they would spend just one month doing to themselves, what they are telling others to do. I guarantee that they like all of us would realise that it isn’t realistic for anyone to live a real life in the way they expect us to. Now I am housebound I guess that I don’t really have an excuse, but when I was still out there working in an office and doing everything we all have to, it really wasn’t possible. Who would take a measuring jug into work with them so they can keep a spreadsheet of urine output, or worse still would you really take it with you on an evening out? As I said not realistic.

I remember when everything went totally wrong with me, when my MS turned violently progressive, it felt as through there was nothing in my life that I wasn’t meant to measure, tick off on spreadsheets, track or report. In those first 6 months, I can honestly say now that the over load of advice, medication, tests and medicines, actually really did make me worse! In a strange way now I think if they had given me a few months to settle in to knowing what was wrong, before they swung into action, I might have coped much better then than I did. I know that then as now they are trying to make you better and trying to give you the help they think you need and you probably do need, but sometimes just letting you settle into how things are, works better than scaring the hell out of you, with a future that might never happen.

The right to dignity

Last night I spent the whole evening sitting on the settee in sections. I heard that what? All yesterday and today I have been having spasms from the base of my spin to about half way down the back of my thigh. Spasms are painful and when they tighten they are impossible to make them let go. It is a poor comparison but as close as I can think of. Everyone at some point in their life I am sure has had a muscle cramp or stitch, they are painful and all that you can do is try and move about forcing them to let go. Now take that sensation raise the pain a bit and spread it over more than one muscle, that would be a spasm. Occasionally if I catch them fast enough and I force the muscle to pull in the opposite direction I can ease their grip, I know that it is a split second thing, that catch point is vital miss it and spasm wins. When the spasms are painfully tight trying to sit on that muscle is painful so all I can do is switch the weight around as much as possible. Added to that because of the problem I have lately had with my bowels I had all the time the fear that the spasms may cause yet another so called accident, I am beginning to see them more a conspiracy to stop my moving just in case. I am sure is must send Adam nuts as I simply can’t stay still for more than a minute or so, he said nothing until I went to bed. If my evening has been painful, to be able to sleep either the pain has to ease off or I have to be exhausted, it was the latter last night.

I woke this morning in the hope that things would be better and that being a new day meant a new start for the muscle games. As I stepped out of bed pain shot through me and urine stated to travel down my now cramped leg. OK not the day I was looking for. Cleaned up, medicated to the eye balls and settled on one buttock at my PC, my day has not changed from yesterday evening at all. The crazy thing about spasm in that area of my body is there can be mixed results on my bladder and bowel, first thing this morning I couldn’t stop it running, half an hour ago it was the opposite. My bladder was full uncomfortable and nothing would leave at all, I had no choice but to insert a catheter to relieve myself. I use them when I need them, but they are not my favorite MS tool, I do have to say though it is one of the few things that has improved vastly over the years. The modern ones come in a water filled pouch that requires a slight pressure to burst water bag, that activates the lubricant making them easier to insert. The container is a discreet size now as well, unlike the ones I first used, so for those still able to venture into the outside world, they can be fitted in a handbag without a problem. Until this morning after 7 or 8 years of use I had my very first accident with them. I had been warned it could happen but sort of put it to the back of my mind, as the muscles was tightly closed I used a little too much force, as the liquid came to a stop and I start to pull the catheter out, blood started to flow.

There is something inbuilt in us that the sight of our own blood is scarey, even when you know that what looks like a lot is only really a tiny drop, it suddenly feels like you are bleeding to death. Shock dealt with I cleared things up and tried to put logic back into the situation, I have checked several times and there is no real damage, a scratch nothing more, but I’m human and I still panic. MS is never fun, but it is hidden things like spasms and catheters that no one else sees, those things that I hide and never get away with my deception. Adam knew last night that I was in pain and I didn’t want him to know, the same way that if he had been here this morning instead of at work, no matter what I had said to cover he would have known something was wrong. This is another one of those things that they don’t tell you about, one of the victims of MS is your dignity.

Rehab returns.

Rehab called round yesterday and as with all their visits I didn’t remember to ask all I should and tell them all I should, may-be I should just give them the links to my blogs and say, read you’ll get a fuller picture. No matter how hard you try to, it’s always hard to make the conversations go the way you want them too. I’m sure we all do this, run through in advance what you are going to say and how you are going to stress things, even on some points what we expect their answers to be, just to find that on the day none of it happens anything like that. I have never understood fully how medical people manage that one, as I always used to prepare for business meeting be it directors or staff, I usually got it pretty close to reality, put me in front of a Doctor or a Nurse and they continually curve ball me. I suspect it has to do with what they think is important, is usually the thing I think is least important. I did guess though that by the end of this meeting I would have agreed to have another department involved and I have.

I have tried everything that they have suggested for getting control of my bladder and bowel with mixed or no improvement, I was sure that the Rehab nurse was doing everything that she could think of but I even know I need more help. So once a small urine test is done, I am expecting a visit from the continence team, I had avoided it as my last dealings with them 10 yrs ago left me being expected to self catheter four time a day. Yes I can do it, but it isn’t a realistic operation to carry out day in day out. At that point I was working in the office with everyone else and having to have the catheters and all the stuff that goes with them, in my bag or draw, was a potentially embarrassing situation waiting to happen. When you are still at the stage of trying your hardest to appear as though nothing in life has changed and you are 110% fit to not just hold down a job, but you can still do it better than anyone else, well. I have stopped and started my use of them over the years and when using them, how often, To date this has worked well, I did go back up to the level I was supposed to be at when things started to go bad earlier this year, it didn’t cure anything and caused irritation that was more annoying than helpful, so back to my system. I am just going to have to wait and see what they will come up with this time but I’m not really looking forward to it as they don’t live in the real world a lot of the time I am sure, especially the real world with poor dexterity and a bad memory.

As my perching stool has seen much better days they are also going to replace that in the next week or so, I know anything will be an improvement to the one now in the corner of the kitchen units, but I am not holding my breath as I am hoping that the styling will have improved a little. It is one of those things throughout my downward slide that bugs the hell out of me, the design or should I say lack of design of disability equipment, esthetically pleasing it isn’t. If the stool wasn’t one of the most useful items they have given me it would have exited my life long ago. I would advise anyone who has Fibro or MS to get one, in fact I would advise anyone to get one even if healthy, they are brilliant. As the name says they are for perching on not sitting which is a great position for cooking from, it allows you to reach, stretch, chop and stir without the restriction of being totally sat does and as you haven’t full sat down, there isn’t the problem of getting up, you just lean forward and the rest of you follows. My ideal image elegant chrome with a cream cushion will turn I am sure into stumpy rubber feet white paint and plasticy looking brown seat. Anyone want to put a bet on it?