Getting it right for all

Posted on July 4, 2016 by livinginalimitedword

As a woman, it should be easy you would think, when it comes to getting used to using incontinence pads, after all, they are exactly like the pads we use when menstruating. For me, there is one huge problem with that, the last time I did that, was 31 years ago. I know that my memory is better when it comes to the past than the present, but even that is pushing it for me. I had a hysterectomy when I was just 24. I know that that is something most women find really hard to handle even when it happens to them later in life, for me, it was one of the best things that ever happened to me. I had my first period when I was just 8 and they had been nothing but a nuisance from that day on. In fact, it was one of the reasons that I loved being pregnant, so when I woke from an anesthetic to be told they had had no other option, I wasn’t sorry to hear it in any way. I felt as though I had been given my life back and that I, at last, had the freedom to live. Finding myself faced once again with no other option than to wear pads, really hit me hard. These last few days, haven’t just been about getting used to the fact that my bladder is now failing me big style, it has been about learning how to wear pads and getting used to not just trusting them, but just the feel of them.

For those of you female readers old enough to remember what sanitary products were like back in the early 1980’s, you will remember that they were nothing like today’s. Back then, if you didn’t use tampons, which frequently leaked, or if you needed the extra protection of a towel, well that’s what they were like, a rolled up piece of kitchen towel , backed with plastic and wrapped in net. Thick, uncomfortable and frequently leaked. Being faced by the modern ultra-thin pads of today, well trust is hard to find. Even finding it in the more familiar looking maxi pads, is tough as you still expect them to leak as they did in the past. My experiment of a couple of days ago when I poured a full mug of water into the night-time pad, helped me a lot, but it didn’t help with the comfort issues. It has taken me a full week to work out just where to position them and how best to make them stay there.

The first time I opened the pack, I did what I thought was the logical thing, to attach the centre of the pad, to the centre of the crotch in my knickers, then pull them up. For people who lead a normal life that might be fine, but I rarely stand and do nothing but sit or lie down. They rucked and twisted, the edges kept unsticking and them sticking to my skin. I just couldn’t get it right. I know that some of you by now are thinking didn’t she read the pack, it’s covered in information. Well, I can’t. My eyesight is atrocious and although Adam bought them for me, I was too embarrassed to ask him to sit there and read all the information on them. I did try to read them myself, but my glasses aren’t strong enough and even using a magnifying glass failed me totally. I headed to the website and was astounded that they told you loads about skin care, types of towels and pants but still not the help I needed. I have at last found a way that is difficult but works. It entails placing them correctly between my legs while standing and hoping it will stay there, while I pull my knickers up, then pressing the adhesive strip to the material. Trust me, it is difficult, but it works. As standing is getting more and more difficult, I quite honestly don’t see how I will manage it in the future. Comfort is important, there is nothing worse than sitting all day with something sticking into you. As bad as the old pads were, you could at least adjust them when needed, you can’t with the modern ones, as they slowly stop sticking and then we’re back to them twisting and rucking. Do I really have to face a lifetime of sitting on my blow up cushion?

It’s one of a million little things that in time will become big things. It appears that as far as pads go, whether I like it or not, I am going to be forced eventually to wear those all in one products. No matter how many different brands I look at, they all scream one thing N-A-P-P-Y! Do we really face a future of being treated and dressed like babies, simply because it’s easier that way? I know it’s such a small thing, and yes, no one sees them, apart from us and eventually our carers, but we’re still adults who want to be treated and dressed as one. Just simply doing something like offering a range of colours rather than nothing but white, would be a start. It’s not that hard to find out the most popular colours of knickers that are sold, then offer their nappies in those colours. I for one without a doubt would feel that bit better about wearing the black version, rather than the white ones, I know it’s just colour, but they just wouldn’t feel like nappies.

When our lives are being stripped away from us in huge ways, if we can at least hold on to our dignity and feeling like adults, rather than as though we are digressing to childhood. It really is those small things that make the difference. I have fought to keep my home as my home, I’ve refused to let it look like a hospital, by taking time and thought and finding products that fit, not stand out, but here I am caught with one I can’t escape. Yes, there are now pants that have an inbuilt pad and are pretty and washable, but they only deal with leakage and are too expensive for most. Once more we are forgotten, we are expected just to accept and put up with it, but I don’t want to and I bet, most of those millions don’t want to either, whether they are male or female. No, I haven’t forgotten about you guys, I know, it’s just as bad for you too.

Please read my blog from 2 years ago today – 04/17/2014 – One last chance

Yesterday afternoon went almost as I expected and I was almost right as to what the role of an MS Support Worker is. They are the halfway house between me, doctors, social work and volunteer agencies, so not qualified as any but with an idea of all, sounds like a lot of jobs these days, a bit of this and a bit of that but none totally. We sat and talked for about half an hour and went over the things that I……

There processes, that’s all

Posted on April 2, 2016 by livinginalimitedword

One of my many symptoms that come and go seems to be getting worse. For years, I’ve had issues with eating. Like a lot of people with MS, I frequently get food stuck and/or choke on it. At one point, I was almost totally unable to eat, because it didn’t just make me feel sick, but ill. There is a big difference, feeling sick can be fixed by taking a metoclopramide table, every time I ate anything beyond tiny quantities, I felt as though I had a really bad dose of the flu. Eating was literally making me ill. I know that makes no sense, but I was desperate to eat but I couldn’t. My weight dropped to just seven stone and I landed up with a gastric nasal tube in place for nearly three years. The cure was as odd as the whole event, when I became housebound and didn’t have all the stress and exhaustion of getting ready for work, being in the office, coming home and undressing again, when suddenly life was relaxed and at my bodies pace, I slow managed to increase the quantities and eventually even remove the tube altogether. I still can’t eat great quantities, if I do I still feel ill, but little and often, has worked now for years. Finding myself with now an increasing range of food problems was something I didn’t expect, I really thought that I had this one licked.

The first issue I noticed was a couple of months ago when I suddenly found myself with tablets sticking in my throat again. Not just occasionally, but almost every round of meds meant I had a tablet stuck somewhere. Some of them weren’t even going down at all. I think they are gone, but by the time I move from the kitchen to the bathroom, I would suddenly find one back in my mouth. Tablets are without a doubt, both the biggest and the hardest things that I try to swallow, so I suppose it wasn’t a surprise I noticed them first. Most of my meals are either made up of soft foods, ones that are by nature both small pieces and granular, such as granola. I do eat a lot of nuts, but because I’m aware of my problems I’m always careful to chew everything well. So a couple of weeks ago, I was shocked when I found I was having problems with even the finest foods. On several occasions just like anyone else, I have swallowed the food I had in my mouth, and added another spoonful, only to find, that the food I thought I had swallowed, wasn’t gone at all, just sat in my throat going nowhere. What can you do when you have the equivalent of two mouthfuls, trying to fill the space where only one should be? On others, it has been sat over the entrance to my throat, in a way that is hard to remove in any direction. Add that to the growing number of time that my soft palate goes into spasm and I can’t even get a breath, well, eating, is now once again becoming a problem.

There is no point in my telling anyone, I have already been through all the tests, all the hours of sitting with a speech therapist being taught how to deal with it all. I have gone through all the lessons about how to eat, what to eat, to keep my chin tucked in rather than raised as it’s supposed to open everything up again, not the word supposed, it does unless there’s a spasm. I’ve been through it all, so unless it gets to the point when food is a pure danger or impossible, there is nothing to be done and I really don’t need to hear someone saying all of that all over again. By the way, our throats, are yet another thing that is controlled by the ever troublesome vegas nerve.

Last night I went to bed, with my heart filled with trepidation. It actually all started three days before when I went to the loo with no problems, well other than there was a piece of stool, trapped at the exit of my rectum. I know that I said I wasn’t going to write any more about my problem with my guts, but I said that before all this happened and this, it’s all totally new. Over the last few months, having a piece of stool I couldn’t get rid of has become quite normal, something I have learned to live with as no matter how I try, all I do is cause myself pain. Yesterday, though, well I had just had enough of it and I decided to use a suppository. A simple step I’ve used a couple of time now that removed the problem with ease and with the wind I had, I thought it was the best solution. The last couple of times, after I had cleared my bowels I had a short spell of mild incontinence, usually more mucus than anything else and it passed really quickly. I was relieved yesterday when it didn’t happen at all. The only thing that seemed wrong was the rather small amount that the suppository relieved in the first place, plus my normal pain was growing, but everything seemed fine right through the morning and early afternoon.

At 4 pm, as always, I went to fetch my psyllium pancake and a small bowl of nuts, as I was just about to sit back on this chair, I felt it, and I knew it wasn’t just mucus. I had the wateriest diarrhea I have had since I had the endoscope investigations two years ago. I cleaned myself up, but it just kept happening. Fortunately for me, I was fine as long as I sat still, (my normal life position) and didn’t have to move from one chair to another, or to get to the loo. I did what I could to clear what was there, but I wasn’t really clearing anything. By the time Adam came home, I had convinced myself that it was just some kind of extreme reaction to the suppository, so I saw no point in even mentioning it. Something that again, I admit that I do too often. Even when I went to bed, padded so that I hopefully couldn’t have an accident overnight, I said nothing to him.

When I woke in the middle of the night dripping with sweat and once again feeling sick, was the first time I began to wonder if I had made a mistake. As I leaned forward to reach my dressing gown and wheelchair, once more I felt semi-solid liquid escaping me. I freely admit that I then allowed the idea that I had a much bigger problem to enter my head. I examed my own abdomen to see if I could find any area where there was a hard mass, I found nothing. Yes, my abdomen was tender, but that isn’t anything new, it frequently is. I have been examing my stomach for years, so I am sure that if there was anything there, I would have found it. Right or wrong, I made the decision that it was just something else that I was just going to have to get on with.Yes, I woke up during the night feeling sick but a metoclopramide tablet, dealt with it and I managed to return to sleep.

Eight hours on, well, on the good side, I’m still here and nothing has gotten worse, in fact, the diarrhea seems to have dried up. There was a little there this morning, but after a couple of hours of being upright, I’m sure that that is, at least, is over and done with. I know that anyone else out there would have been to their doctors or the local hospital, but being housebound actually puts both of those things out of reach for me as I have explained many times before. I’ve written all of this because it has to be documented so that it’s here, where it belongs, amongst all the other joys of life with chronic illness. It is just another 24 hours of my life, hours I have to remember and I have to be able to tell the consultant when I see him. Whatever is going on inside me, it’s clearly getting worse.

Please read my blog from 2 years ago today – 02/04/2014 – The 10 year root

In the last couple of weeks, I have been having problems with the internet, the download speed has dropped to a ridicules 3.7 and I had simply had enough of it. I hadn’t even been on our providers website for years, so, of course, I had forgotten my password and there was only one choice to reset, once that was done, I logged in with two things in mind, firstly to find out if we still were in contract to them and second who to complain to. Much to my surprise, I had just clicked on the complaints tab, when it took over and ran a speed test, telling me we should have a download speed or 12.5, it was our router that is causing the problems. I hadn’t even really considered the router as a possibility, although I did rebooted it just the other day, just in case and when there was no improvement or change, I put it firmly back in the “Talk Talks” domain……

Routine affairs

Posted on January 20, 2016 by livinginalimitedword

There are days when life just seems to take pleasure in screwing you over. It doesn’t have to be the big thing, in fact, if it’s a series of small things, somehow, that is even worse. I know that a lot of people think that my life inside my housebound bubble, living in a reasonably tight routine, that things couldn’t possibly go wrong, After all, the point of routine, is to keep things the same, but that still doesn’t stop them going wrong. It is the one thing, you can’t plan for, and no matter how well thought out things are, they will find a way of doing just that. If there is one golden rule I have found, if it can go wrong, it will.

When I woke up the other morning, after successfully having been to the loo that night without wetting myself, I was feeling good. So OK, it wasn’t the most earth-shattering reasons for feeling proud of myself, but it was enough to put a smile on my face. It wasn’t just that, it was because I thought that I have found a way of making it not happen. It was simple, don’t move quickly. OK, my quick might equal your slow, but by not trying to fly out of bed and stand up, rather taking it in slow stages, I stayed dry. When I woke, I took a minute to stretch my arms, take my sleep mask off my eyes, and gently uncover myself. I raised myself slowly with the elevator, stopping for a second or two every now and then, then slid my legs over the edge of the mattress. I made a point in sitting on the edge of the bed, letting everything inside me settle, then slowly stood up. Success, nothing happened, just as I hoped it would. Which confirms my theory, the sudden actions cause my insides, to suddenly squash down on my bladder, moving slowly avoided that happening.

Waking again at 7:45, found me with a smile on my face before, I even thought about taking my mask off. It was going to be a good day, I just knew it. Within 5 minutes, I realised just how wrong that was. As I was getting back into my wheelchair in the bathroom, I realised that my balance was off, not that unusual for someone like me, but it caught me unaware and I crashed straight into the wall, catching my funny bone, on one of the units. You don’t need me to tell you how much that hurts. A body full of Morphine somehow doesn’t change these things. Somehow, I always thought that it would, but injury pain when it first happens, feels as it always has. It would be nice if there were just one tiny bonus to all of this, but if there is, I still have to find it. Having a wheelchair, also turns into a disadvantage at this point. There is none of this walking away holding onto your elbow, comforting yourself, no that arm has to work and to do so straight away, pain or not. My smile was gone and I was now heading for my PC, feeling a touch sorry for myself.

As soon as my PC came to life, I searched through the overnight activity on my different accounts, only to find there was a two-hour gap of nothing apparently happening. Twitter was down. As everything I do in the first two hours of my day, is centred around Twitter, this was one major issue, far more than you might think. Try as I might, it is incredibly difficult to get my brain to accept something isn’t working and that I need to do things in a different order. It quite simply doesn’t like it and won’t do it, for more than a few minutes. My mind just wouldn’t accept what was going on and do what anyone else in the world would, something else. I checked this, that and everything, not once, but every few minutes, as I just couldn’t sit here and do the logical thing, write my blog. My brain was screaming at me after each sentence, “just check again, it might be back”, of course, it wasn’t but I kept checking. I was on the verge of going crazy and I was clearly achieving nothing. I literally had to leave my PC and do something else. luckily, I could have breakfast and take my meds, no computer needed there, it was a little early, but it got me away from this infernal machine.

Once I had eaten my Granola and used my Nebulizer, I fetched a small bottle of Ginger Beer from the fridge, Adam fills them for me daily, as it’s easier for me than fighting with huge bottles and fragile glasses. I was sat in my chair, looking at the tablets he had left out for me to take, and instead of putting the pills in my palm, I poured Ginger Beer into it, not stopping until I actually saw it pouring onto the floor. I had just sat there looking bemused by the liquid pouring off my hand, I had developed the reactions speed of a slug, and even then, one that was asleep. Once I had actually, taken what was happening, cleared up the pool on the floor and swallowed my tablets, I moved on to my inhalers. In the last couple of days, I have been having problems with a new inhaler that had simply turned up without warning. I have now for several months been on Seretide 250, which is a normal every day looking old fashioned inhaler, that people have used for years. What arrived was Seretide 500, a diskus accuhaler, something I had never used before. The name sort of describes how it looks, more or less like a mini discuss which a sports person would throw. You simply swivel the outer case around and it reveals the mouthpiece. The instructions were obvious and I thought nothing of it until I tried to use it. Every inhaler that I have ever used in my life, and there has been an array of them, have all made a sound when you are inhaling the medicine, or once you have completed the dose, this one is silent. On top of that, they have all had a flavour, or in the case of a powder inhaler, a grainy residue, this had neither. There was nothing to confirm that I had taken a dose or not, or if, the thing was actually working at all.

I have to admit, that on my first use, I tried it three times but, heard and tasted nothing, that’s how convinced I was that it wasn’t working, I took the chance of taking three doses. We decided, that Adam would take it back to the chemist, to change it as it was in both our opinions, clearly not working. He did this after work yesterday and when he returned, he had with him, exactly the same one. Apparently, it was working perfectly. They had loaded it just as we did, then tapped it on the counter and the powered fell out. Neither of us were convinced, as the point still stood, no matter how hard I sucked on it, I tasted and felt nothing, surely there should be something, they just tapped the powered out, that doesn’t mean I can suck it out. Anyway, I tried it last night and I still wasn’t convinced, but stupidly, I closed it without tapping it on the counter, to see if any powder remained. So, I had to test it this morning. I hate to say this, but it seems to be working. I did just as it said, and then tapped it on the counter, to see if any powder fell out, nothing remained. I know your thinking, but that’s a good thing, isn’t it. Well not in my book, because now on top of a sore elbow, and a wet knee and a PC/brian that will let me do nothing, I was totally mortified by the fact I had sent Adam on a wild goose-chase and embarrassed by my stupidity.

It took another hour, for Twitter to return, and I was so far behind that I thought I would never catch up. Those who know me will realise, that meant that my frustration and stress levels were high. I was doing everything that I could, to catch up, but there was no way, that was going to happen. Worst of all, was the fact that I couldn’t keep my eye off the clock, every minute that ticked by, I saw and felt. Then the phone rang. It was Jake making his weekly call to check on how I was. He is the only friend I have now from my old life, we have been extremely close now for over 20 years and consider ourselves more as family, rather than just friends, and he was in one of his chatty moods. Normally, I love to hear from him, and I look forward to and enjoy chatting for as long as he has time for me, but yesterday, well no matter how I tried, my eye was still watching that clock. My brain is like that, once it has something set in it, it doesn’t give up. By the 15 minute mark, I was almost relaxed, we had been laughing and sharing stories and I knew, this was going to turn into one of hour long trips to the past. It was probably just exactly what I needed, but my body wasn’t going to play the game. Out of nowhere, my bladder was screaming for relief. I hadn’t even made it to lunchtime, and not one thing had been completed or had gone smoothly, other than breakfast. Even Twitter still wasn’t working properly, it was back, but not stable.

Yesterday, life and my body, were conspiring against me, as the day went on, it got no better. Small things, but when put together in a chain, enough to drive me up the wall, and once there, I found raised pain, increased spasms and a headache from hell. So thank you life, as if it weren’t for your determination to thwart me in every action, I might have had a good day, you alone, turned my day into a living nightmare. It’s easy to just think that our battle is with our health alone. That is the picture that so many portray, that if they were just cured, life would be perfect. Sometimes, it’s just good to be reminded, life is a bed of roses, there are millions of ways for it to catch us out and when given the opportunity, it will.

Please read my blog from 2 years ago today – 20/01/2014 – Embracing the devil

That early start yesterday just pulled me down and down as the morning went on, I completed my blog and a couple of small bits and pieces, but just before 11 am I went to bed. I felt so bad I was at the point……

The edges of hell

Posted on January 19, 2016 by livinginalimitedword

I have so enjoyed the last few days because of the improvement in how I feel. The Gabapentin rise has worked wonders, not pain-free, but it feels so good to not be wanting to swallow booster tablets, within an hour of taking the last one. Don’t worry, I never did, but I was often sorely tempted. I have still taken a few, but when I do, they do their job and I can get on with life. It all seems too good to be true and I haven’t had to wait too long, for something else to step up on the annoyance scale. For years, I have gone through spells of poor continence when it comes to my bladder. A lot of the time, it is just the odd drip, or the odd occasion, being caught slightly short. Yes, there have been times when it has been a total loss of control and a lot of clearing up to do. All forms of MS seem to have an affinity with bladders. For me, it has mainly been problems emptying it, rather than holding on. I even have a good supply of catheters which the hospital decided about 11 years ago I should be using at least 3 times a day. I did for a while, but then I learned that by using my relaxation technique, I could achieve a huge improvement, so unless, I was having huge issues, I could actually manage without them. There is only one thing that you should never do, and that is to strain in the belief that that will force out what remains, it doesn’t. I have had the odd short spell where I have had to resort to their assistance, but I will try anything else first, as trust me, it is just something that intrudes into your life, that medical benefit or not, you want to avoid them.

It has to be about two months ago, that I had my first bout of waking up and on standing, finding that I have no time for dressing gowns or wheelchairs, I’ve had to get to the loo the fastest way possible. It has to be one of the worst instant quandaries there is. You stand up and a drip runs down your leg, if you sit down on the wheelchair, your bladder is going to empty on the spot, but walking is pure danger. Choose!?! So far, I have gone with the taking the danger route, but not without a huge dose of fear. Last week, I found a new issue and this one made me start thinking. I had been to the loo about 15 minutes before and I was getting into my bed. I had just pulled my legs in and I was tucking the duvet under the mattress, to stop them escaping later, as they frequently do. As I twisted, I felt liquid move and it was a millimeter from leaving me for the mattress. It didn’t make sense, but a similar thing happened the next night. Then to my shock, it happened during the day, the first time I was trying to reach something on the floor from my wheelchair, the second, when I twisted to reach something, suddenly I was on the verge of wetting myself. I guessed that they were both due to pressure on my bladder, somehow caused by my movement, rather than an inability to hold onto it. Then last night, I woke up and had to get up, thanks to the pain in my back. As my feet touched the floor it wasn’t just a drip, but total loss of control. The more I thought about it, the more I realised that every bladder failure I have had recently, where usually in line with the pain in my back or stomach. I think that my loss of control has a lot to do with an overloaded bowel, that I can do nothing about. Knowing that, though, isn’t going to stop it from happening.

My bowels are moving, but I have no idea how long it is taking to make its transit. I do know that it was around 10 to 14 days, but I quite honestly haven’t eaten any sweetcorn for months, so I haven’t been able to check. I know from the pressure I can feel, that it is always full, but I have actually had a bowel movement almost every day for the last week. I’m not traditionally constipated at all. The Psyllium is doing its job, and even when I add in a laxative, as I did last week, it did little other than make me go twice in one day, which just meant I didn’t go from the next 4 days and really changed nothing. This one has me stumped at the minute. If I load myself with laxatives, I am only going to cause more pain, the reason my consultant, took me off them all and told me, to never take them again. I just can’t think of any other way to sort this and it feels so wrong to treat one organ ruffly, because, it’s adversely affecting another. Equally, though, I can’t stand incontinence, regardless which form it is. It is one of those things that you just can’t hide, especially, when it is your husband who does the washing. On top of that, there is the problem of clearing up the trail I leave behind me, as I make my dash. I find it almost impossible to clean it up as well as it should be, especially, when you’re forced into doing the work with your feet. If this was a permanent problem, well yes, there are answers to it, but I don’t think it is. I really don’t want a commode, sitting in the bedroom for years totally unused. Nor are pads the full answer either, yes for the drips, but I don’t know any pad that could have collected what I lost last night.

I don’t care what anyone says, there is a huge mental flip that we are expected to take, and for some reason with ease, when, it is another subject people don’t talk about. I have to say, there has been, a huge improvement in the last few years, with the advertising of feminine hygiene products, as they call them, on TV. It has brought a more mainstream feel to things, but that doesn’t stop you from feeling, that you are basically wearing a nappy. To some, it might seem stupid, and I know without a doubt, that Adam will tell me, but I find it personally easier to talk about my death, than I do about a bladder that is failing, regardless of the reason. If, I could get out and about, if, it were just a case of stopping off at the chemist and buying what I needed, then quietly dealing with it myself, it wouldn’t be a tenth of the problem, but as it now stands, I have no choice. I can’t do these things, I am forced to ask Adam, to do the shopping for me, and I find that really painful. It is things like this, that make being housebound difficult. I can deal now without even thinking about all the other issues it throws up, but when it comes to things like this, I find it hard. We all need some things we want to keep private from our partners, not hidden, just discreet and private. For me, this is probably, along with bowel incontinence, which yes, I have had a spell of, that I would like to have at least the choice, of keeping it private. The only alternative that I am aware of, would require me to request a visit from the incontinence nurse, she would them be able to set up a prescription for these items. The downfall there, is, that you have to order them every two months, stop, and you have to go back to the start of the circle. I hope that this will just be another one of those phases. That within a short period of time, things will go back to normal and the problem will be gone.

I’m not stupid, I do know that regardless what anyone does, I will find myself eventually, bedbound and having to wear a nappy. They can call it what they want, that is basically what it will be. Even the alternative of a catheter with a bag isn’t much more comfortable on the brain. It is one of the details of life, that is high on my list, of things that would just make life, unbearable. I suspect it is for most of us. It may be a hell that is a long way from now, but every time I go through a spell of this, or almost anything to do with my bowels or my bladder, I know that what I am feeling, is the edge of it, or if you prefer, a taster of the loss of dignity I face, and that’s something most humans prize greatly.

Please read my blog from 2 years ago today – 19/01/2014 – One simple step

I woke early this morning, at first, I wasn’t sure as I have woken in a gentle slow way and at first, I was totally unaware of any reason for it. I lay there with my eyes shut with the thought of sleep first in my mind, then I liked my upper lip, suddenly…..

“I” have become “We”

Posted on September 19, 2015 by livinginalimitedword

It was just past 3 am and I knew I was going to have to get up to go to the loo. This was going to be my first middle of the night visit since I had acquired my new transport. As I stood up to put on my dressing gown, I felt a drip running down my leg, followed by another and then another. There was no time for dressing gowns, or to even sit in my chair, as without a doubt that would be the worst thing that I could possibly do. Holding your bladder back is partially possible when standing, sit and I knew that I don’t stand the slightest chance. As fast as I could, I crossed the hall for the bathroom, aware with every step that there was also a drip being left behind me and with each drop my heart was sinking. As I reached the toilet, I had heard Adam waking up, if what was happening wasn’t bad enough, this meant without a doubt that he too would also be aware of it all. This is the second time in just a couple of weeks that I have lost control in the middle of the night. The first I put down to just plain bad luck. It wasn’t the first time ever that it had happened and I was sure that it wasn’t going to be the last, but not so soon. I can go months without even having to think about my bladder, other than the fact that I normally can’t actually empty it. In fact, I had been through that problem just earlier in the day. It doesn’t matter how long you have been ill, or how much your partner loves you and understand, there will always be things that mortify you ever single time that it happens. For me, this is one of them.

Looking back on it, what I did next seems quite odd, but it felt like the right thing to me. Once cleaned up, I went back to the bedroom and got into my wheelchair before heading back across the hallway to the kitchen. I know I could have just stayed on my feet and turned the corner between bathroom and kitchen with ease, but getting off my legs and safely back on my wheels, was top of my list of priorities. As I sat having what was a deeply needed cigarette, I heard Adam cleaning up what I couldn’t, which didn’t make me feel any better. He came into the kitchen to see that I was OK and didn’t say a single thing about what had just happened. What did I do to deserve this man?

We both know and knew this was going to be our future, but that doesn’t change those feeling. Those things that are instinctively sitting there inside us, just waiting to make us feel bad. I know that time is closing in on me, and that that time I had put down as away somewhere in the future and didn’t have to be thought about just yet is slowly arriving. That is one of those horrid things about chronic illness, there are so many of those in future points. When you are first diagnosed you read all the things that are there waiting to happen and dismiss nearly all of as somewhere off there in the distance. Then the first one arrives, it isn’t expected, or acceptable, all you want is to make it go away. At first sight, you mark it up as a one-off, or something that might happen again, but not tomorrow or the next day. It might be closer, but it can’t be here to stay, not yet. On its second appearance, well you still keep kidding yourself, trying to tell yourself that it can’t be that bad, it has to be something you can control. We hide and we hide again, but no matter how much hiding we do, it’s still there and it’s just keeps getting worse. Slowly it chips through one layer at a time, sometimes moving further into our lives, on others we find new and hopefully stronger layers, ones that this time, it surely can’t breakthrough.

It doesn’t matter what the symptoms are, what it does to us and how much of our lives they manage to take over, we still colour all of it with stories that permit us to keep going. It’s part of what others call our strength, it isn’t our strength at all, it’s plain simple lies. If you don’t fully admit the truth, then you can cope with anything. The people each year who receive those glitzy prizes for acting, shouldn’t go to actresses and actors at all, they should be given to us, the chronically ill of the world. I have learnt to put on prize performances without even being aware that I am. It becomes so much part of you, that not doing it, would be probably far harder. Yesterday, I poured out truth after truth. Admitting all the thing that I had hidden from myself because hiding was easier and allowed me to live day to day with the illusion of normality. It wasn’t until I sat and thought about it, that I realised that the only person I had been kidding was myself. Adam was clearly aware of it all, he knew how much he was doing for me each day. He didn’t need to sit down and make a list, as he is living that list. It was only me who was living some kind of fantasy life. Looking back, I have done this over and over again. With each new symptom, I have played this odd game of denial. I say odd because clearly I’m not an idiot, I knew what I was facing, but by denying it was happening right there and right then, meant I could put off dealing with it, just that little bit longer. I always had to clearly deal with the physical aspects, but that didn’t mean I had to deal with the psychological aspect it brought with it.

I guess we all have our wake up days. Whether or not you write a blog or are just in the middle of trying once again, to get past that point in your day that is getting harder and harder to deal with, that wake up call will arrive. They are like blinding lights that steal more and more of our lives each time they appear. Suddenly, you discover that that point that was once in the distance, has actually been crossed and not just by seconds, often by weeks. Bang, you have reached a new level of disabled and that always hurts. It is over 14 years since I made that list of milestones. What I have woken up to in the last couple of days isn’t just how many more I have passed, but how close together so many of them were and how so many of those still ahead of me are. I though milestones had years between them, I was wrong. They once were, but now they seem to be in clumps. Losing your ability to do one task, actually when you look more closely, usually means you lose the ability to do a huge range of things.

A doctor might ask me, “Can you dress yourself?”, but although I would answer “Yes”, what I am doing is hiding. “Yes,” I can dress myself as my clothes have no buttons, no zips, no laces, or hooks and eyes or fastening of any sort. If all of it is loose, made of soft stretchy fabrics and can be pulled over the required part of my body that needs covering. In essences, I told no lies, I just didn’t answer the question that was really being asked. If you think of all the actions that I can’t manage within that one milestone, well you see not just a couple of difficult actions, but a huge range of everyday tasks that I can’t actually do any longer because of one thing, dexterity. Within all that, you find also a clump of skills milestones, all stuck together and hidden by my answer. I know exactly what the doctor would be really asking, but he doesn’t know that I spend my life in pyjamas and dressing gowns. Fashion these days makes it hard for people to know what you are wearing, my clothing has been the same for 6 years, at home or at the hospital and I always get away with it. By answering that one question with a “Yes”, I am also lying to myself, as I can push that milestone away again by simply ignoring the detail. Take that game and spread it out over my entire life and I can appear to myself and others as not that badly affected, when the truth is the opposite.

Once more I find myself looking at my life and wishing someone had sat me down and explained what the truth of a diagnosis with a chronic condition really meant. If someone had just explained that the milestones of any condition actually affects so much more than that tiny bullet point in a list made up by clinicians. Clinical milestones are as pointless in the real world as an ice axe in the Sahara. Illness isn’t just clinical, it’s real lives in a real world, it people who have lives to live and how they manage that can’t be measured by medical milestones. Once the majority of our life is in the hands of others, even if that is to simply set things up so we can manage our day, we can’t even be measured by the ones we create, as there is no longer a measure that matters. Does it matter medically or in any other way that Adam now sets up small bottles of Ginger Beer and Coke so that I can have a constant supply to drink while he is at work? It matters to Adam and I, and yes it does say something about my degree of disability. But what it really says is that I am cared for, that although I can’t cope, we can. I had missed that. That is the big change, not my wheelchair, or my wetting myself, or any of the other things. What matters is that “I” have become “we” and right now at this level, “we” are comfortable with it and need no other help.

Please read my blog from 2 years ago today – 18/09/2013 – Shhh!

The final required signal that winter is on its way, I am now eating porridge in the morning! Somehow getting up to find the house cold there is once again a need to eat something hot and tasty, I’ve never been sure why we all go looking for…..