Getting it right for all

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……

My only advice

I’ve read a couple of posts lately, giving “advice” on things not to say to the chronically ill. Personally, anyone who wants, can say whatever enters their mind to me, but they had best be prepared for an answer, weighted with just as much stupidity, wit or candor as their comment, advise or question. In general, I believe in freedom of speech, but I also believe, in engaging your brain, before you speak to anyone. Having said that, though, I do agree with the thought that has been put into all these posts, that there are the longer you are ill, things that the brainless of this world, continually say to us or tell us. If I had a penny for every quackery diet or cure, and a further one, for every new and unproven cure, I would be rich, not cured, but rich. But what annoyed me most about these posts was the very concept that anyone should talk to me differently, just because I am ill. In general, I don’t want to even be treated differently, well no differently that any true human, would treat anyone else in my position. It is always more than appreciated, when anyone, does anything for me, that I can’t do myself, but I don’t see that as being treated differently, just being treated with the courtesy we should always show for each other as humans.

I am ill, that doesn’t make me any less of a human. It doesn’t change me into a different species, just a variation on the theme. A human on wheels, who stutters and has tremors, who forgets their words and is frequently confused. A human who finds the world a difficult place to navigate and the objects within it, difficult to use, as other more adept humans can. If we do need anything that is not usually given freely by most, then it’s time. We don’t in general manage to do anything as quickly, or with the finesse that we once had, but we can do most things, including talking if you just give us time. I have a deep belief that all of us, as long as we are not paralysed for our necks down, can do almost anything that we choose, if, we are just given time. People are just in too much of a hurry to jump in and “assist”. Oh, I know much of it is well meant, and it is, without a doubt, the hardest lesson that Adam has had to learn when it comes to caring for me, to let me struggle, a little longer than he is comfortable with.

Doing things for ourselves, even those things, that other can do quicker and without being in danger of any sort, is important. The more we do for ourselves, the more our personal wellbeing improves. I still insist in preparing the odd lunch for myself that requires either the use of the oven or the microwave. I have one meal that I prepare using each, but Adam wants to do them for me, mainly because every time I do so, there is a 1 in 3 chance of my burning myself. I don’t like getting burnt, but I do like the feeling of achievement. Those small dishes of food, taste extra special because I made them all on my own. Granted, a kid could cook either, but it didn’t, I did. It doesn’t matter if it is a dish of noodles or taking a shower, doing it on your own, makes it something special, just as once cooking a banquet, or swimming a mile did. Our achievement may have diminished but our self-pride hasn’t.

To the able-bodied that is something that is hard to grasp. Surely if a disabled person is struggling to drink from a glass, and at times dribbles from it or drops it, well buying them a sipper cup is the answer. To the disabled person, that is hurtful. It’s hurtful in ways that many will never understand. The most obvious is quite simply the fact, that a sipper cup is used by children, the purchase of it, is like saying we are no better than one. That cup would symbolise the opinion of the buyer, not the feelings of the recipient. It is a slap in the face, that as the blow lands, it simultaneously whips the rug out from under us. If I were to give advice to anyone about caring for someone who is chronically ill, or disabled, it is quite simply this. Never buy, or change anything because “you” think it will help, until the person themselves asks for it, or you have truly discussed it with them and they have agreed. We probably still won’t like it, but at least we are saying ourselves, “things need to change.” All those little things, even drinking, is something that we all hold on to, it’s called independence, and it along with dignity are the most precious things that we have left in our lives.

All humans need to feel in charge of their lives, that feeling grows with every tiny thing that we lose, so being treated and spoken to as we always have been, is vital. That’s why I said at the beginning of this post, there is nothing that can’t be said, asked or questioned about, as long as you would say, ask or question every adult on this planet, in the same way, manner or tone. Just because my mind doesn’t work as it once did, doesn’t mean that I am any less intelligent. If for some reason, we don’t understand you, we will say so, so please, don’t speak down to any of us. The most important thing anyone ever needs to know about things to say or do when in the company of someone with chronic illness, is quite simply this, treat us and speak to us always as your equal and nothing less.


Please read my blog from 2 years ago today – 14/04/ 2014 – Answers at last

Last night we made a breakthrough in finding where my Mother is. Adam had been trying to get information from the NHS but had failed to find her as according to the Aberdeen records department she had been discharged several months ago, as to where she had gone they couldn’t say. We were left no better off, but from what my brother had told me in December, she wasn’t going to be able to go home again, so how we were going to find her in one of the thousands of OAP homes out there, we had no idea. Adam said he was willing to download from the Web the phone numbers of all in the area and just sit and call them, but as I pointed out that could take months on its own. We were left with only one option, to contact Brain and get the information out of him somehow. Following my desperate wait for news of Mum all the way through December and never getting an answer at any time when I phoned, day or night, nor any……

It’s really simple

I was reading a blog yesterday that I sincerely hope was tongue-in-cheek, as it was saying the most outlandish things about spending time with disabled people, and how to both speak to and treat them. If it wasn’t tongue-in-cheek, then I just found someone who needs locking up. Either way, it made me realise that I have over the years, had many odd reactions from strangers. Granted, when you are asking for help to get out of your wheelchair with loads of parcels, I suppose it does set other people’s minds running. I had to get up two steps, yes, another one of those well-designed buildings, but there was no other choice. Some people are extremely helpful, but I have noticed one thing, from taxi drivers onwards, no one ever wants to touch you, not even when you hold your arm or hand out. I have never been able to work out if they are scared of catching something, or they are scared of hurting me, it could be either. I suppose it is another one of those situations, where education and personal experience means everything. But as a golden rule, if someone offers you an arm, your not going to hurt us and it’s rare, that we have fleas or any other sort of lurgy.

It isn’t that many years ago, where the general opinion out there was, that the second your backside settled in a wheelchair, you became brain dead and deaf. Personally, I have only come up against that reaction a couple of times, but over my lifetime, I have seen it far too often. Once again, I can see that the world is changed and is still changing, but it wasn’t fast enough for my life. With schools now being integrated and disabled children no longer isolated to spending their childhood, with only other disabled children, there is a generation growing up, who will treat us, very differently. Clearly, I haven’t been out socially for over 8 years, but I have noticed on the few trips I have taken to the hospital, that not only has the world changed, so have I. I can remember seeing people sitting in their wheelchairs, with their carer saying almost everything for them, and wondering why, they weren’t speaking for themselves, now I am beginning to understand.

The hospital that I go to the most is the one where Adam works. When you arrive by hospital transport, you can’t bring your own chair, so you have to use the ones available and they all have to be pushed. We often when we are there, bump into people he works with, and they will exchange a few words. I don’t know them, nor do I have anything to say, so I sit there silent. It would be just the same if we were out in a shopping centre, if we met someone, it would be someone who knew Adam. Why? Because housebound or just wheelchair bound, we don’t go out, and the longer that goes on, the fewer people we actually know. Oddly as well, the longer you are isolated, the less you actually feel like sitting there chatting for chatting sake. Logically, you would expect it to be the opposite, but it isn’t. Spending so much time alone, should you would expect, make you want to make the most of every second that you have, with people, but you don’t. The truth is, the more time you spend on your own, along with the worse your health gets, the more withdrawn you become. To my surprise, these days when we go to the hospital, I know that I now adopt a body posture that simply screams, leave me alone. It is one of those things, like any piece of body language you don’t notice you are doing it, until later, when you look back on your day.

I had never thought about it until recently, but it is a posture that I have seen right through my life, from others being pushed in a wheelchair. We sit there, hands folded on our laps and our eyes cast downwards, often, we also sit not straight onto the world, but slightly to one side and it screams, I’m here, but I’m not. On occasions, the way I sit has far less to do with my mental state, or how I have changed over the years, but the pain I am in at the time, but no one but I, know that. Our perceived body language isn’t always what it means, more what our bodies are doing to us at the time. I hadn’t realised just how degrading being pushed in a chair is, far more than propelling yourself. Haveing to be pushed, is a diminishing experience in its own. I used to blame it for me being like that, but now, well now, even if I were to be in control, it wouldn’t be any different. The more ill I become, the longer I am housebound, the more I am withdrawing from that sort of interaction with strangers. The combination of my stuttering, memory problems and everything else, is turning me into one of those people no one really knows how to interact with, and I can see and feel it happening.

So how do you react to someone who is so clearly shutting you out? You speak to us as though we were standing next to you smiling. If that is how I am treated, I respond like I would have done 20 years ago when I was fit and healthy, just with a stutter and few missing words. Don’t shout at me, I’m not deaf. Don’t put your head on one side, and bend towards me, that comes across as patronising, or depending on your smile, intimidating. Don’t crouch down to my level, that’s how people speak to children in a pushchair and I’m not a child. Don’t speak slowly, I do still have a brain. Even worse, don’t speak slowly with emphasised facial actions, as I’ll feel like punching you. It doesn’t matter how I look. If I’m twitching or quietly trying to pretend there isn’t a speck of drool on my lip, treat me just as you would treat your friends. The majority of us that you will ever meet, have brains. There is only one fact you will ever need to remember. No, complex issues or list of possibilities, it’s simple, we are people, treat us as such.


Please read my blog from 2 years ago today – 21/02/2014 – An appetite for inaction

I woke this morning with one small problem, breathing. For once this has little to do with my COPD, this is the fault of yet another cold that Adam caught and of course, means I then catch it as well. My head felt like it had been……






A search for dignity

Over the weekend my arms haven’t been too bad, a lot of tingles and some mild spasms but I managed not to drop anything or to loose control over them. I was reminded on Saturday night of a sensation I have never written about nor has anyone asked me about it, but I am as sure about this as I am that MS causes spasms, that I am not alone. If I am not doing anything for example watching TV or lying in bed, I frequently loose the true location of my limbs. To explain this one is easy for once, I know I have lain down and both my arms are a couple of inches from my body, within a couple of minutes it feels as though they have moved and are now are a couple of inches off the bed surface and my hand is on my body. The nerves are sending me misinformation as to it’s location and it is amazingly realistic, the longer I remain motionless the more limbs join in on the game. No matter how much I correct and confirm to myself that I haven’t moved them, the more I feel they are nowhere near where I left them, it is really odd. So far it has only ever happened when I am motionless, but I can’t help wondering if anyone out there has ever found they aren’t getting true spacial information about their bodies when they are totally awake and in the midst of daily life. I know that I miss gauge the distance of things I’m not actually looking at properly, knocking things over or banging into them with my hands, but the idea of it being worse than that is clearly possible and clearly not something that works when trying to live a normal life. I have just realised that telling someone that your hands and feet aren’t where you left them, is actually quite funny and makes me sound amazingly stupid as well, how can you loose your limbs which are attached to you. I suppose that is one of the thing about living with a mixed up nervous system, it has learned to give out misinformation whenever it wants to and there is nothing you can do about it.

My biggest problem over the weekend has actually been my bowels again, I can’t remember when I last actually went to the loo, but I do know it was before I last went to the hospital, so I took some laxatives on Friday with a very small result on Saturday and a further tiny quantity on Sunday. Over both days I have been having the spasms from hell in my gut, often stopping my and making it hard to move until it lets go. Last night I tried to go to the loo again as there was a mild need to, but I at first couldn’t go, so I did what I have been told not to and strained. If I hadn’t had a endoscopy and a battery of other tests done a few weeks ago, I would now be worrying as what I passed was like spaghetti and to the right hand side of my bowel it felt as though there is a tennis ball sat in there stopping me from going. More laxatives last night and nothing is happening at all, with some straining it is the same as last night. So I am gong to take a larger dose tonight and if nothing has changed by tomorrow morning I will have to call the doctor as endoscope or not this is not normal for me in any way what so ever. This whole issue is really getting to me now, all those test and no explanation of what is happening other than it’s my MS, well hello, there is no way this is caused by MS.

There are so many problems with being housebound that aren’t in your mind when it first becomes clear that you can’t be out there in the outside world independently. Once you are locked into your home unable to do much you then find yourself sat all the time, your weight rises due to your lack of mobility and then the bowel and bladder issues join in. Anyone regardless of the underlying illness will probably at some time have all these issues. Internal health isn’t just about what you eat and drink, the less exercise you take the slower your guts will work, add on to that the drugs that they fill us with and the problems are clear. Whether or not you become housebound by age or health, these issues occur and are common to all of us, so you would think that someone out there would be working on ways of managing it, without having nurses to apply suppositories or supplying incontinence pads which ever are required. I can’t help but think there has to be a better way of managing it all, right now I don’t know what that is, but there must be something. You wouldn’t believe how something that should be simple like going to the loo can impact on your life, but it usually is the small things that just won’t behave that eat away at your day and your life and most of all your dignity.

I am on my way back.

I am behind on everything today as the visit from the Nurse took longer than I expected. She arrived slightly later than I expected and also had another nurse with her, the first surprise of the morning. I had already decided that I was going to be direct from the start and that I was not going to be pushed in to something I wasn’t happy with or had already been tried and failed. We spoke for quite a while as I took her thorough the whole story, right back to when I called for help from the Rehab team. She did seem to have arrived with an agenda but I had one too. She tried several times to jump over some of what I wanted to say but I wouldn’t let her. I explained how I felt about her coming here every second day and that it wasn’t about the actual treatment but, the start of having to have someone else assist with my daily care. She tried to reassure me that they would intrude on my life as little as possible, I answered that one and what I said seemed to be the light bulb moment for her, I told her the truth, she could be here for a second or the whole day, it was the fact that anyone was having to be here at all.

We talked a bit longer about the actual treatment she had brought with me and what it should do and how it should help, as to how or who is going to actually give me the treatment that is a little up in the air. She has given me the first treatment of a micro-enema, it is a small plastic tube with just 5mls of liquid. The effect hasn’t been much of a success, I lay on the bed and we chatted for a while, after about 10 mins I asked her if I should be feeling anything by that point, she looked at me and I knew I was going to give her the answer she didn’t want, I wasn’t feeling anything. I went to the loo with virtually no success, she said that for some people that was normal and that later there will be a total clearing of my bowel, so I am waiting. I have here all the stuff she brought me a bag of blue plastic gloves, a box of the enemas, and some gaze pads, when she calls in the morning we will discuss what happens next.

The plan is to use the enema every second day for a week then see what the effect is, I think because of how clear it is that I find this an upsetting process she was deliberately vague about whether she will be here to administer the next dose or if I am to try myself. I have to say though that having had the opportunity to actually talk over the whole subject I do feel a bit better, on Tuesday the nurse that was here had left me lying on my bed in tears and let herself out, today I saw them out and I wasn’t crying, I had control. It may sound a little odd, but just the fact that I let them in and I saw them out, made me far more comfortable, and is leaving me feeling more positive about the future process, what ever it is and who ever has to assist with it or not. That final act though has some how made a big difference, on Tuesday everything happened to me and I was left to get on with the residual damaged physiological punch that had be delivered. Today I am waiting, the normal patient condition but waiting with my dignity healing slightly but still bruised.