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…..

Every solution breeds a problem

For the first time since I sat in my wheelchair several weeks ago, I actually abandoned it yesterday. I had just been back and forward to the kitchen three times, the first planned, the second two, to fetch what I had forgotten. On the final time, I climbed out of my chair and was about to sit back down here. My eyes scanned the desk as I was lowering myself with the aid of my desk, when I realised, I hadn’t been to the fridge to pick up a drink. I gave up on the lowering and slammed down on my chair, my head hanging low and so angry, I wanted to scream. Once more, I was going to have to fight with my arms, which had complained through every turn of my wheels, on my last trip. Here I was, with no other option, but to return to the kitchen and to go through all of that again, but, I did have an option, I could walk. In some ways, I am really surprised that I haven’t taken that option before. I still have legs, yes their weak and they are unreliable, but they are still here. So I did it. I walked. Through every step, I could feel myself shaking from my toes, right up to my hands, but it was still faster and it didn’t hurt my arms. I had walked there and back with my hand dragging across the wall and grasping at anything, I thought, would hold my weight if my legs failed. I have to admit, that the relief when I was once more sat here, was huge. All I could hear going around and around in my head, were questions, “What would I have said to Adam if I had fallen?”, “How would I explain the fact I had left my chair and stupidly walked all that way?”, “What on earth had I been thinking?”

It isn’t something I am going to do again in a hurry. Somehow, I think I actually needed to do it. Not just to fetch the drink, but to remind me, why I am now once again on wheels. Changing your life, from ambulatory to assisted by a wheelchair, is a huge thing to do. The idea that you just sit down and totally forget, that your legs are even there, would be madness. I can, as far as the physical mechanism of walking goes, still actually walk. I can stand up, take a few steps in safe areas, but the whole idea that it is safe to do so over greater distances, would be the greatest form of insanity, I could lay claim to. Trust me, life in a wheelchair may be safer, but it is a million miles from easier, faster or even enjoyable. At first, it was all a challenge. Dealing with all the sharp turns and obstacles that seemed to actually jump out in front of me from nowhere. I learned, I grew more confident and slowly, I became used to it. At about that very point, my arms and hands stopped just being annoyed at me and took up a stance, of pure objection to the whole thing. Mornings have usually been not to bad, but as the day progresses, there is less and less cooperation. By the evening, it isn’t just when I am moving around, but when I am doing totally nothing, I am in pain from my neck, across my shoulders, and down into my fingertips. Worst of all, it is no longer just my thumbs that are dislocating, I now have three more fingers, that have discovered the same trick. None of them jump out totally, but enough, trust me to cause extreme pain and to have me grabbing and pushing them back to a normal location as fast as possible. If anyone has the cure or even something that would help, please tell me it. It so often feels now, that what seems to be the answer for one problem, turns out to be just another problem. Life has reached a point where nothing is a simple straight forward process and I honestly, can’t see it getting any simpler, anytime soon.

It isn’t just pain that my chair is causing. I have issues at night because I can’t manage to move quickly when I am half asleep, without crashing into things, usually causing myself more damage than anything in the house. I need speed, because I normally wake, out of the need to get to the loo. No, I don’t want a commode in the bedroom, not for a long time to come. My chair won’t fit into the far end of the bathroom. There simply isn’t enough space, although that wasn’t a problem two months ago, it is now. So, I am now considering grab bars and rails, to assist me. A step, I’ve resisted for so long, that it somehow feel ironic, that I’m thinking about them now, thanks to another aid. Again, thanks to my chair, having a shower seems like a much more complex and annoying process, than ever before. Clearly, standing in the middle of the bathroom, to get dry is just too dangerous. If my legs won’t hold me when walking, or even just standing for a short while, the danger when twisting, standing on one foot, or any of the other odd positions, we stand in when getting dry, is pure danger. Bringing my chair in with me, yes, it means I can sit down, but because that means it has to be brought in backwards, once in, I can’t get to the loo. It also makes getting dry, one, huge problem. The towel catches on everything, wheels, brakes, armrests, footrest, you name it, it will catch. No matter what system I use, I always seem to land up with damp spots, that I don’t find until I am trying to get dressed. I could ask Adam to help me, but that holds two problems. First, I don’t want Adam to be drying me and second, it’s another idea that I have fought against for years.

My wheelchair may well have removed the danger of my landing on the floor, but it has brought with it, a range, far bigger than just those I have listed, of problems that I now have to fix. If, I hadn’t stood up yesterday; walking out of total frustration; with the result that it had; quite honestly; at this point, I would be thinking of returning it to its cupboard. I need it, but it’s not making life easier, in any way I can think of. Actually, I have to take that back. I know that all I have to do is read back to the posts I wrote when I first set off on my newest form of life. It did have a huge positive impact, and I have to remember that. It isn’t so much the chair, it is life has so much clutter attached and moving in a rather large and new piece, isn’t going to be easy for anyone. If I am to tell the truth, none of us want our lives altered, by anyone or anything. Life, no matter how scary, is most enjoyable when we keep it simple. We don’t like change, and we definitely don’t like change that means, even more change, is required. I know myself, that it has more to do with attitude and desire, than reality. We see problems, that aren’t really problems at all, they’re just more change and that’s the real issue. If I can find grab rails that don’t scream hospital at me, well I could live with them. The rest is much harder, but solutions must be there somewhere, ones that aren’t just going to lead to even more problems once in place. The real problem is, is it doesn’t matter how far you try to plan into the future, when your fighting against an illness, that just doesn’t stand still. As I said, two months ago, rails weren’t required, they’re need though, is getting closer. Ouch! that has just put something into my head, something I hadn’t thought of, until this very second. Are all those problems, that I’m blaming on my chair, actually just new problems, ones that would have appeared, with or without it? Can I scream now, please, pretty please?

It’s a horrid thought that new problems will appear every two months, maybe, I’ve just reached that phase. Could my health really be moving that fast? Is that really why, I am feeling suffocated by problems? When I think about it, it kind of makes sense, but so did my first line of attack. I always knew that as time went on, that I was going to be doing more and more problem solving, just to make life livable. If I am going to remain independent, I know that life will have to change, systems revised and problems solved. Stupidly, I started putting them off. My brain is degenerating just as my body is. Much of what I am facing now, where problems that I always knew, would rear their heads, but I was doing the normal human act, of putting it off. Once, no problem phased me, in fact, I embraced them and loved them. There was nothing like a new challenge, just to keep you going. That, though, is now my main problem, being human, it has forced me into a world where mentally I am playing catch up, instead of being one step ahead, as I once always was.

 

Please read my blog from 2 years ago today – 18/11/2013 – Caught in nowhere to go

If I hadn’t spent so many years living with pain I think that at some point over the weekend I would have been at the local A&E department. My diaphragm is still giving me no peace, but it has made me realise just how…..

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.

Stupid embarrassment

Over the last few weeks I have been having more and more problems with my bladder again. It is something that I have the solution here in the house but I avoid using simply because it is a fiddle and strangely one thing that I have never been able to get my mind to accept as a solution, rather than a problem in it self. I suppose we all have the one thing, that monster that hangs around and we do everything we can to avoid, mine is catheters. Bladder problems are actually one of the most common problems that MS causes and for some it is actually one of the first symptoms. For some reason you are both incontinent and unable to empty you bladder. I know that is a combination that doesn’t instantly go together, as if you are incontinent you would think it would empty with ease but what happens is you will leak, often just a few drops sometimes a slow stream, then when you get to the loo, it keeps stopping and starting, often just slowing right down and you can sit there for 10 minutes with that process repeating itself until you are sure it has to be empty, until you stand up of course. The bad news is that even then there is probably a lot still there hiding. For a long time I just got on with it and did my best but then I started to get frequent infections, that was the point the NHS took over.

I actually had to spend a week in hospital learning how to insert a catheter, one week, it was nuts. After my third attempt I was ready to go home but no, I had to stay a week. My input of fluid had to measured against the output or urine and they wanted to watch me for several days using the catheter so they were happy. Now I doubt you have ever had to have a nurse with you when you want to go to the loo, their faces within a meter of an area that not many have ever seen, coaching you. I can tell you now I would still have a full bladder if it hadn’t been for the catheter, as it was simply embracing. To this day it is still embarrassing although I don’t have the nurse with me the whole process causes embarrassment even when there is no one here.

If you haven’t see a self catheter kit you probably won’t understand how they could possibly be but it is. The new packs aren’t as bad but at firs they were a horror, I had to take with me not just the catheter but wipes as well, there was a constant worry that someone would see them. To use them you had to open the seal, add sterile water from a bottle you also had to take with you, then wait for 5 mins for it to activate the gel, which lubricated them. Then wash you hands before inserting the catheter, empty your bladder, then try to dispose of all of it so no one saw all the pieces. This all meant that from start to finish I was in the loo for nearly 15 minutes, that is a long time, that alone to me was embarrassing especially at work. The new packs are smaller and contain the water already so the prep is cut in time and there are less things to juggle and hide, but even at home I feel this need to ensure that they are always hidden.

I know I have to get over this as some point as well the future will means I will have no option not to use them, but even Adam collecting two months worth from the chemist is, you got it embarrassing. Although he knows all about them I still want to hide the whole process and find myself, lifting rubbish in the bin so I can hide the used packs and the huge boxes under it, as I don’t want him to see them even in there. I don’t understand how I can sit here and write all this but the thought of going right now and using one fills me with dread, because I then have all that palaver to go through. Stupid, stupid, stupid I know but I can’t get past it. It’s 8 or 9 years since I first started using them and stopped just as quickly. There use is now when I have no other option, stupid because it puts me at risk of infection. Infections that put me in real risk of illnesses sever enough to put me in hospital, as my body wouldn’t cope with it. I should use them 3 times a day, but knowing what could happen and the risk I take by ignoring it, just isn’t enough to make me grow up and admit to myself, properly, inside where it matters, that no body cares other than me just how embracing it is. So what if another part of me needs intervention, I guess just me.

Irritations

Last night I actually managed to stay up until 10 pm, it was the first time for weeks, I’m not sure what made the difference but I was really glad for once to not be running away and leaving Adam just sitting there by himself. The simplest things make you feel guilty when it is out of your control. No matter how I try those are the feelings that I have never managed to get under control, the guilt of not being able to have the life that you and your partner thought was ahead of us and now because of something you can’t do anything about, it has all gone. Once I had been through all the other emotions that having an illness like MS has attached to it, guilt is the one that even 11 years on from diagnosis still manages to pop up all the time. Not being able to work is the thing I feel most guilty about as we have lost a good standard of living to a limited one. If I was fit and healthy I would still be earning a good income and we wouldn’t worry constantly about the bills and the mortgage. I’m not saying it is a feeling that is there every second of the day but it is there and it is an unwanted pain in the neck.

Strangely my lungs were filled again this morning but the worst they have been yet, but when I stopped coughing I actually fell better than yesterday, and my MS knows it too. Spasms in my left shin and tingles in both hands. I hate tingles they are like mild pins and needles but they make you want to scratch but there is nothing that needs scratched, and it does nothing to help either. I remember for years telling my doctor that my whole body was itchy, he of course looked at my skin and there was nothing to see. I am sure it is little things like that that slow down diagnosis, once again it is the use of the English language and explaining to a medic using none medical terms what is wrong. It has been one of those annoying things that of course as it is caused by my nerves, no matter how much I wash or add cream, there is that nasty tingly itchy feeling, some days it is everywhere but it’s favorite location is my hands and my chest and the top of my back, sometimes it has been so bad that I have woken in the morning and I have dots of blood on the sheets where I have scratched through my skin. Although it is one of the minor symptoms on the scale of symptoms. it is probably the one that is just the most simply annoying!

I know that unless there is a sudden change that I am also going to have to start self catheterizing again, I just simply haven’t emptied my bladder for several days and that is a invitation to bladder infections. Some of the MS medics have told me several times that I should do it all the time at least 3 time a day, but I really don’t need to, like many things you learn what you need and how to manage it. I know that one day that will be the final result and possibly more than 3 times a day, but I don’t see the point of putting my body through something it doesn’t need. If it has the ability to do what it is meant to do, even for a short time longer I really believe that I should at the very least allow it to. I have said many times that getting to know your illness is really important and this is very much one of those occasions. The Medical professions do there best to set out schedules that are for everyone, but many illnesses don’t hold to the perfect written descriptions. It takes a few years to learn what your body does and doesn’t do, what will make it easier to live with and what aggravates it but ultimately it is you who knows it best, convincing doctors of that is often a different story. When it comes to medications then you have to be more careful about adjusting things yourself but there are many things that you can play around with and find out what works best for you.