The bubble doesn’t exist

It amazes me just how many people out there, are still living in the cosy world of, what should be, actually is. Almost daily, I still hear from someone who thinks that being disabled, is a comfy life, where we are well taken care of, and that our lives are as simple as not being disabled is. I think the one that I hear the most, fits around what the word “housebound” really means. Oddly, the majority of people seem to think that all it is is not getting out as much as they would like. I have even had people who have actually said things like “I’m just like you and I totally understand, I haven’t been out since last week”, or the other classic, “I hate not being able to get out and about by myself.” Sometimes, it’s hard to not get angry with them because, there are no grades of housebound, you either are or your not, just as there are no degrees of having a chronic illness or being disabled. Worst though are the ones who aren’t ill at all, the people who as I said, live in a comfy world where everything and everyone is totally taken care of. To some extent, I can see where their thinking comes from as I actually remember thinking just the same thing years ago. I was like everyone else in the UK, I was wearing blinkers, put there by the “Welfare State”.

Back in the 80’s and 90’s there was very much an image put out there, that no one ever suffered any more. That no one even struggled, as they were scooped up by the state and cradled, against the worst their health could do. I think it was a picture that actually grew from it’s very creation when the NHS, and the care systems, propaganda involved showing happy people smiling in wheelchairs, or well protected within a caring society. I thought, that the second you became so ill and you couldn’t work, that the state swung into action, caring for and taking care of, absolutely everything you could possibly need. We had all swallowed the propaganda, hook, line and sinker. It was an image that held fast right on into this century and if you believe what is on TV, only started to crumble when austerity started to bite. Wrong, it crumbled far sooner than that, I, in fact, wonder, if it ever truly existed. From my own life, I can site issue, after issue, that proves that Welfare State, never worked at all right back into the 70’s, and the NHS had holes, as big as a battleship throughout.  I can site my two sons, Jeffery and Christopher as just two painful and perfect examples. No one swept in to make their lives the way they should have been, and no one swept into repair the pain and damage that their lack of care actually caused. If you need further proof that the so-called “Welfare State” doesn’t work, well, there’s me.

It just goes to show the power that propaganda actually has. Right through to today, there are people, who think, that the state would spend money on something, like getting me, outside of my house, for a day. I’ve been here 8 years, I’ve seen doctors, nurses, specialist and social workers, not once has anyone, batted an eyelid over the fact, that I can’t get out of my home. Not one has even been surprised at how long it is that I have been here, or that no one comes to see me any longer because, this is the normal pattern, this is how it really works. There is and never has been the money to do all the things that people seem to think, should happen without question. Those current day pictures you see of happy people in wheelchairs, or being cared for in the way we believe people should be, have nothing to do with the “State” and everything to do with charity, or insurance payouts. If you want carers, if you need helpers, you have to pay for them. Yes, there is, if you are very lucky, a fund that will help, but the boxes to tick, the hoops to jump through, are huge but almost impossible to hit. The way that I see it is that I am happy, I can still cope with the life that I have, I would rather those who can’t cope, get the care that they need to live a better life. The day for me will come when I’m not coping, then I’ll try to claim my slice of the pie, but for now, I’m sweet enough as I am.

In a bubble gum world, no I wouldn’t be stuck in my flat, I’d either be living elsewhere, or there would be a way out of here. In a bubble gum world, I would have an electric wheelchair that fits into the restraints of my home and takes away the pain caused by the manual one. In the ultimate bubble gum world, I wouldn’t be ill at all. This isn’t a bubble gum world, so what I am going to do about it? I could make myself miserable, spend my days being angry at the world and life, or I can get on with it with a smile on my face. I choose the later. Oddly, I am allowed a choice, despite the fact that I didn’t have a say in any of the rest of it. It is the same for all of us, life boxes us in, it doesn’t matter what’s inside those boxes, be it our health, our job or our fears, we all have boxes piled up around us that stop us doing what we want. Some of those boxes can be removed, others can’t, that’s just the way life is. I could make a list as long as my arm of things that would make my life better, but no matter what is on that list, at the top of it is one unmovable object, my health. As I have said over and over that the only way to live is to accept those immovable objects and live the rest of your life.

The Welfare State hasn’t got the answers for us that we expected. They can’t cure our conditions, house us or care for us in the way we expected. In many ways, I don’t know why we ever expected it to be any different. I’ve learned that the hard way, but I honestly think that it’s time our country woke up, took their blinkers off and saw all the people who have become lost in a system that doesn’t even exist. There are millions of people out there who need our help, they are not being cared for, no one is helping them, they aren’t cared for and loved as I am by my husband, Adam. They are alone facing every problem of chronic illness brings, but without the support, of people who love them. It is not just the elderly who are isolated and alone. Far too many are standing back, thinking it’s not our problem, well it is, it is a problem for every single one of us who has a heart. It is a problem for all of you, for one in every twenty-five, so yes, the odds are high, that one day, you too will find yourselves, living just like me, like Adam, or them, alone and in pain in more ways than one.


Please read my blog from 2 years ago today – 04/12/2013 – Is it me or you?

Yesterday post set me off thinking during the afternoon, one small part of it kept going round and round in my head, how long is it since or have I ever had a body that was well? It’s actually probably is an……

World changing

I have tried so many times to analyse why I manage to be housebound and happy, when so many, find it hard enough dealing with just being chronically ill. I always come back to a short list of things that I believe have made the difference, but even that doesn’t feel like the full answer. Briefly for those who don’t know what they are,

1) Making your home the most pleasant, luxurious and comfortable, that you can financially afford to make it. A simple logical step, everyone is happier if they are comfortable in their surroundings.

2) Stay busy, don’t just sit in front of the TV, have hobbies, be online, whatever fits with you, but stay busy and stay entertained.

3) Have a routine that keeps you living at the same time of day as the rest of the world. Don’t start sleeping all day, and being up all night. Get up just as you would have when you were working and have a bed time and stick to them. Humans are creatures of routine, some may not like that, but we are, boring or not, we do thrive on it.

4) Have goals, big ones, middle sized one and small ones, the size doesn’t matter. It can be anything from writing a novel, to just making your own lunch or even cleaning your teeth, you must have goals and loads of them daily, a personal todo list with bells on, that you can keep chipping away at daily.

5) Following goals, comes achievements, that is the whole purpose of them, we all need to be able to pat ourselves on the back at what we achieve daily. It takes us more effort to do those things so achieving them is a big thing, feeling proud of ourselves is a fabulous mood lifter.

6) Be pigheaded. Don’t give up on things, just because something fails once, doesn’t mean you are a failure. Clearly there is a point where we all have to accept we can’t do certain things any longer, but as long as you have tried and been determined, we can say you didn’t give up, then you can never be a failure, just ill.

7) Don’t be hard on yourself. You have to love yourself, you have to be able to give yourself permission to stop, to rest and to take some time out, if that is what’s needed. You have to learn to strike a balance between number 5 and 6.

8) Having someone who cares for and loves you. That can be a partner, a child, a friend, a carer, a neighbour or even a pet. It’s the feeling that matters, not where it comes from, or where we are returning it to, but our emotions need a focus to feed from and an outlet to pour them back too.

As I said, it’s a short list, but those eight things, always seem to me to be the most important thing anyone needs when it comes to surviving being housebound. It doesn’t seem much when I just write it down like that, it actually seems kind of obvious, as, without those seven things, anyone’s life can be hard. In many ways, that is the point of this post, it’s the one thing, I think, that so many people miss, housebound really isn’t any different from life anywhere else, it’s just life.

I don’t know what it is that other see as so hard about being housebound or chronically ill. I have questioned that over and over, and to me, if there is a problem with it, it more that we believe there will be, than anything else. Clearly, the physical aspects of illness aren’t pleasant, but even they, I believe are imagined to be worse than the reality. No, it’s no party, but once they get your meds right and you learn what is required of you, to keep your own personal monster happy, life does get easier again. Plus there is actually a saying that is truer than many think, “You really can get used to anything,” even pain. The picture painted by the media and our imaginations when it comes to chronic illness is of someone who is frail, almost withered, sitting slouched in a wheelchair, constantly in unbearable pain, unable to speak or make themselves understood and being spoon fed. That might be for many of us our ultimate destination, but there are many many years for most of us, in a life far more normal, than most think. Many, like me, manage to hold down a responsible position within a company, where my work and decisions had a huge impact, not just on the company, but the staff. From onset to housebound, is a very long road and one were many observers don’t even see. That is actually I believe is part of the problem. People fear those words “Chronic illness” because they only see it from the start of the closing phase and mainly never see the actual close.

By the time I eventually left my office for the last time, my staff had become used to seeing me buzzing around the office in my wheelchair. I had lost a lot of weight and was being fed by a nasal gastric tube. I wouldn’t be surprised if you tracked one of them down and mentioned me, that their first words would be “Is she still alive?” The assumption would have also been mine, if the shoe had been on the other foot, my knowledge of chronic illness prediagnosis, wouldn’t have fitted the reality at all. I am almost certain that if all of us who are ill, were asked to compare our reality with our pre-illness belief of what it meant, all of us would paint very different pictures from our realities. That I believe is the real problem, that for far too many years, our real lives have all been hidden from the world. Until very recently, it was expected that if you were diagnosed with something like MS, that you gave up work instantly, as you wouldn’t be capable of continuing, and not for just MS. The old expectations and behaviour has led to the world believing that a diagnosis is as good as a coffin nail. People are clearly not just scared of being told they have a chronic condition of any sort, they are terrified. They don’t know or even have any expectation that their lives can continue almost unchanged for many years, in some cases, for their entire lives. Life can go on and it can still be a good life. If they are terrified by the thought of getting ill, is it any surprise that they can’t get their heads around being housebound as well, to me, not at all.

I can’t speak for the rest of the world, but here in the UK, all of this hasn’t been helped by our benefits system. It is something that is being rectified now, but the assumption was until recently, that a diagnosis was a ticket to the easy life. You could give up work and receive, no not a huge sums of money, but more than enough to live, especially if you were in rented accommodation. When I was first diagnosed, Adam and I went along to an MS support group, we only went 4 times, as there was no real support at all, unless you were having problems navigating the benefits system. That was the only thing they talked about, how to claim and how to get, every penny out of the government possible. We went because we wanted to learn about MS, I was wanting help with how I could as time went on stay working, but we found none of that. There were people there who were far fitter than I was at that point, who had already given up work, simply because they could. It was like a badge of honour, they had MS, so they were due a living from the state, it was as simple as that. I don’t blame them, they were just following their leaders, the people who have lived that story over and over as far back as the creation of the welfare state. As I said, it’s changing now, but it’s a long slow road and it takes time to re-educate people’s expectations.

Until the time comes when people are more willing to talk about their health, and the reality of life with chronic conditions is common knowledge, the fear won’t go. I think that that fear is what still holds onto even those who do have a condition, when it comes to being housebound. That is a much harder fear to break. By the nature of the word, no one sees us. How do you teach the world not to be scared of something they can’t see? It is as hard a job, as teaching it to not be scared of disease, full stop. It is an irrational fear to even have. Are you scared of going home to your own house? Are you scared of having to stay in for a whole weekend, or even a couple of weeks if you are ill? What is there to be scared off? There is nothing now that can’t be done online. I can shop, speak to people, see a movie anything that I once did when I was out and about, I can do now. So OK, no I can’t go to a restaurant or a party, but they aren’t thing you do every day, the are blue moons. Everyday life is as easy and as enjoyable when housebound as it was when I was mobile, in someway’s better. I don’t have to worry about clothes and makeup, freak about deadlines as I can never be late. I don’t have to worry about buses, taxis or trains, I health has ridden me of so many pressures, that at first, my health even got better. Like so many other things, our fears towards anything is learnt. Just as no one is scared of the dark until some nice person tells them about monsters and ghost, no one would be scared of living my life, if someone hadn’t planted the idea in their heads of just how bad it really must be. Well really, it’s not.

We are the only people there are who can teach future generations that OK maybe having a chronic illness or being housebound isn’t something to aim for, but it isn’t something to live in fear of either. This circle has to be broken, life goes on, it’s changed, but it still goes on.

Please read my blog from 2 years ago today – 01/11/2013 – Positive about me

How we see ourselves and how we see our role is something that actually grows, not diminishes as illness redefines us. It can be hard to just look in a mirror or to try to cover the body we don’t recognise with clothes…..

Our past matters

I had an email yesterday that led me into a trip down memory lane and finally has severed my connection to my last company. I had been wondering for a while what had happened to the person who ultimately became by boss over my last couple of years working. Amanda and I had sort of kept in touch, not really friends, but we touched base occasionally, then suddenly about 18 months ago, she stopped contacting me. I felt at the time ready to let go of my work years, we all move on, but there was still that tiny thread that remained. Then out of the blue just over a month ago, I found an email from Linked In waiting in my inbox. I get them from time to time and usually delete them without thought. But something made me go to my account, somewhere I haven’t even bothered looking at for over 3 years now. I was somewhat surprised to see that my recommendation from Amanda was gone. I couldn’t think why she would do that, it seemed just a little odd to say the least, but as I am no longer looking for work, well it didn’t matter. Yesterday’s email prompted me to return again, this time, though, I was going there to close that account down. It was then that I remembered there had also been a recommendation for another college from the same company, had also gone. That got me more than wondering and I simply had to start investigating. Both Amanda and Tracy had worked for them since they left school, over 25 years for both. Amanda and I had both become sales managers at the same time, but we went in different directions when my health slammed in and she completed a business degree. I became Operations manager and Amanda eventually Call Center manager. At that point, she made Tracy the only sales manager as we had restructured and only one was really needed, but I worked closely with both.

Just at the point that I became housebound, Amanda became Sales Director. I was shocked, not that she didn’t deserve it, but we had both frequently said that there was one job never to take in that company, and that was Director. They had an uncanny habit of making people up to Director level and within 3 years, getting rid of them. Yet she took on the role and I tried to be happy for her. My investigations yesterday has shown me that not only is Amanda no longer working for them, but neither is Tracy. After over 25 years service, they are both gone. Clearly, I don’t know what has happened, but with both of them gone, it has severed my last links of loyalty to the company and my view of them, has changed completely. I could sit here and imagine what scenario could have lead to such a thing, but they have once more shown their colours. I can only guess why Amanda removed her link to my Linked In profile, probably because she didn’t want me know what happened, she didn’t want me saying, “I told you so”. I had on the day she was promoted congratulated her but reminded her to watch her back. Somehow their demise has severed that string that held me connected to that point in my past. I have frequently found myself going over things that had happened there, some with warmth and some with pain, but this change, feels as though it has put all of them to bed. They were the only constant in those 13 years, and now they’re not a constant any longer, they too, are gone.

I suppose, it is understandable, that once you are housebound that you do hold onto the last things you knew in the outside world, tightly. I don’t remember, even once, finding myself going over any job that I had before that since my world was diminished in size. I suppose, that the fact, that I worked from home for a further three years, hasn’t helped in any way with breaking free. After all, right where I am sat at this moment was my office. Work and home for quite a long time, were actually, the same place. Even allowing for that, my determination to put things right in my head, at least, if not in reality, has been strong. It is almost as though that by reliving and reliving, I was going to find that flaw that would let me back in. As long as I knew that Amanda and Tracy were both still there, two people who I very much saw as on my side, even though I was made redundant, there was that possibility, that my help would be called on. That is now totally gone. I guess none of us like to believe that anyone can cope without us, even when I totally agree, my role in the once again restructured company, wasn’t required. But when it was the final blow, after fighting for so many years, to actually keep working, it was painful.

When all you really have, is the past, it does skew your view somewhat. Most of us, are so busy just trying to keep up with the now, that we don’t have the time, to go over and over, the thing that happened before. My now, is the same day in and day out, and I don’t exactly have a future to look forwards to. Don’t take either of those in the wrong way, I am not saying that my life isn’t good. It is just so different from normality, which usually involves a list of life as long as our arms, without work, to keep ourselves busy. Each event, is different from the one before, with a good dose of unpredictability to go along with it, that means we can’t say for certain, even what today will hold. I can. I can be certain, not just for today, but for next week and the one after that, and the one after that, especially, as I have now removed the danger of falling. I can even tell you who I will talk to and on which day, my life is nothing like what it once was. When that happens to you, well oddly, the past is an exciting place. Even those people you haven’t spoken to for years are important, and very alive back there, it is such a different place to be and somehow, because I can’t change the present, I try to change the past. I go looking for those small details that I missed, changing perspective and looking again. I guess, there is one other thing going on as well, a fear that if I don’t keep reliving, that like so much of my life, it will disappear on me, and then, I truly won’t have anything, but the now.

Being housebound is actually easier than I ever expected, but it is also much weirder. I expect, that everyone would have to build their own world and their own way of dealing with it. Clearly, it would be impossible to write a guide on surviving being housebound. Actually, I think, it is impossible to write a guide on anything that involves people. We are all so different, so if it is anything other than how to feed and water yourself, or how to build a shelter, you can’t guide anyone else through anything. I know how I have reacted, how I have worked through the things that have happened to me, but I don’t have the slightest idea how you would survive it. Without a doubt, we all lose our friends, oddly no one seems to be willing to come in here with us. If you are the sort of person who needs to be surrounded by people, you will find it much harder than I do. I have always, thanks to my family, been used to spending time alone. What we learn as children, really does, no matter how you try to shake it off, shape your entire life. I wasn’t allowed to invite friends into my home. No one was allowed inside, not even into the garden. So I learnt at an early age, how to entertain myself and to enjoy my own company. I thought that having such a huge and rich selection of memories to feed off, that I would never run out. But once I had done my forgiveness run, forgiving everyone I could think of including myself, who ever hurt me, they dried up. I was stuck with just those from the last 10 years and nearly all of them were about work. Like it or not, that is where we spend the majority of our waking hours, so it is logical. Just as logical, I remember my failure, far more than my successes, even though they outnumber the first.

I know that I have said in the past that it is important if you know there is the possibility to build a cocoon, a home that is filled with beauty, and somewhere you want to be. I will always believe in the importance of that, but now, well now I wish that I had somehow also built memories, good ones. If you know this is your future, build happy memories, go places, do things, whatever you can, that you can look back at, with happiness. As the only thing that I know for sure will apply to all of us, is that our past will always be important, if for nothing else, other than a route to escape along.

Please read my blog from 2 years ago today – 24/10/2013 – Removing the blinkers of life

It is amazing how we all go through life with blinkers on, it isn’t a choice, it is just part of being human, if we took in everything to its fullest extent, I believe we would implode unable to simply cope with cold reality. It doesn’t matter if…..

Making a differenece

I must have suddenly hit that age, or there really are a lot of desperate people in need of money or wanting to come to the UK. In the last few weeks, I have been hit by so many men on Twitter declaring their undying love, on their first or second tweet to me, that it has quite simply become funny. I guess they look at my picture and read my bio and think here is a target, someone perfect for scamming. I have had the odd one or two in the past, but the numbers have just shot up recently. Yesterday, I think I actually hurt one by accident. He wasn’t like the rest, he had at least taken the time to send me about 15 tweets a day for over two weeks, all in response to one of my tweets. In fact, adding him in as one, I think might be a little harsh as I wasn’t even sure if he was male or female until yesterday. No, I wasn’t being thick, but a foreign name and no avatar make it very hard to work out at times. Last week I started to wonder if my friend was looking for something else, but I couldn’t be sure. Then yesterday, I answered a tweet from him and in it I mentioned Adam, I suddenly received an apology for being friendly with me and promise not to bother me again. He had said one thing I took with a pinch of salt last week, that he was planning to come and see me, and that turned out to be what he was apologising for. People say all kinds of things, something like that felt very unlikely to ever get any closer than just those words, so I had ignored it. In fact, I had totally forgotten it had even been said. Now I feel guilty for just being friendly with someone on the other side of the world. Social media has created this mad world where what we do and say, isn’t like anything we would ever do in real life. A couple of generations ago, you wouldn’t have spoken to anyone without a social introduction, now we not only do we talk, but say the most outrageous things and even personal things, without a second thought.

I have frequently said that if there was one quick and economical way of helping people who are disabled, have a chronic illness, or mental issues and the elderly, is to put them online. What it would cost a health authority is minimal by the saving they would gain from the less frequent visits to doctors and hospitals. Social media is a gift still waiting to be tapped into by those who would gain the most. Loneliness is a killer, and I for one don’t think I would be dealing with my health so well if it wasn’t for everyone that I have met here online. Well almost everyone, there are a few that I could have managed to get on perfectly well without, but the good ones, they out number them with ease. I can say with surety that the majority of issues I have had online have been brought about because of my high number of followers and people that I follow. The numbers alone bring in a degree of nutters, a number of scammers and some, well some that shouldn’t be online at all. I can say that with surety as I didn’t even notice them until my profile level was up over hundred thousand followers, then they all started to appear in droves. To the average user, this place is a godsend and should be utilised for it’s benefits.

When you live with a memory like a sieve, trying to hold multiple conversations with people all over the place is hard. I do try to remember all their personal stories and their reason for being there online, but it’s hard. Just as I am useless with names and faces, I am useless with small chat details, especially when people vanish for weeks and then suddenly reappear as though we were chatting yesterday. It is a difficult world to keep hold of, even more so when they suddenly change their avatar, which was at least a clue to me as to who they are. Trying to remember of a hundred thousand individual and very different followers, is impossible, yet some seem to expect me too. I love my online life and all the people it has brought into my circle of reach, but I can see that it is going to get harder and harder as time goes on, to just make sense of it all. One of the reasons I gave up on Facebook was because people had different names and avatars from twitter, but they expected me to keep track of it all. I couldn’t and it made life harder than I could deal with. Don’t worry, no I don’t intend to give up on Twitter, but please be reasonable when dealing with a sieve and accept a simple fact, you or part of you, might have fallen through one of those holes, not intentionally, but because it just happens.

To date I haven’t tried to use Adams smartphone or even a tablet, I am still content to be sat here with my beloved desktop computer. I have though thought about making a change, not yet, but in the future. With my legs slowly going, I can see the day will come when I can’t clamber out of my chair and make my way to the otherwise inaccessible office space. It appears to me that technology may have actually come up with a new form of computer conveniently at a point in my life that I may need it. I have to say I was totally against them at first. Clearly I wasn’t the only person who looked at them and spotted a problem, everything about them was too small. I have noticed that they are slowly getting bigger, which might just mean that my overactive fingers tips might be able to actually to touch just the thing I want, not ten others at the same time. The only thing that worries me is that I can’t actually go anywhere to test run any of them. It will be a case of pot luck if I choose well or not. The internet may be here for me, but finding the correct access point to match my health needs, is far harder to get. Although I now have little doubt that it is out there somewhere.

In some ways, one of the beauties of being online for many I am sure is the fact that they can be totally anonymous, especially if they have a disability. Suddenly, online all of that can vanish and they are just part of the community. No one has to say anything about their health unless they want to, I can see why some find it a wonderful freedom. I chose to be upfront and totally open about everything and I know that is what draws many to me. They know that what I say is true and that I at least believe every word to be accurate. But that actually puts a pressure on me that I never expected and it was worse on Facebook than anywhere else, people ask me for advice. I have frequently been stunned by the some of the help that I have been asked for, as though I am an agony aunt and one with a knowledge of every single thing in the world. I have lost count of the number of times that the words “I know you will tell me the truth” has been in a tweet and 99% have nothing to do with health. I guess all of us find ourselves in places we don’t expect to be, but this one really bemuses me, as I am just an average person who has spent the last 8 years indoors. What do I know about the outside world? Nothing, any longer.

Although I can understand why some might want my help, for the life of me I can’t understand the next oddity that being online has brought me. Of all the things I expected that being a high profile person online would bring my way, not once did I expect to find myself almost daily sitting looking at a single part of the male anatomy. I’m sorry, but I just don’t get it? Why do some men think this is the way to get attention positive attention from a woman, disabled or not? All it gets from me is a quick report to Twitter, followed by being blocked. After just over 3 years on Twitter I have in the last 18 months been bombarded by tweets and follows of this nature and trust me, it’s not what you want to see while sitting eating your breakfast. Equally, neither do I want to be staring at the female equivalent. I have over the years heard on the TV that there is a huge issue with porn online. I can confirm that and add that you don’t have to go looking for it, it presents itself over and over again. Yesterday alone I blocked 15 Twitter accounts.

I don’t think that I could be happy if I didn’t blog and tweet. It is now so much part of my life that being without it for even a day would leave me at a total loss. I have completely replaced what the outside world gave to my life, but being here. I doubt that when the world of social media appeared that anyone who was writing the programmes even once thought about the housebound and disabled. I doubt that we were even a flicker in a dark corner of their minds, but this has been as of much of a positive impact on my health as my meds are. I once feared that being housebound would bring an end to my working life. It wasn’t I just moved it all online. When redundancy and not being able to find a single company interested in employing me, despite thousands of emails and applications all done online, I joined the world of social media. Computers have been in my life for the past 19 years, in ways I never once expected or thought possible and I can see them now being with me to my final days. I don’t normally envy people at all, but I do envy the generation now growing up, as they have the power of the world at their fingertips. Throughout their lives, they will naturally live within two world, connected in ways that we can only now imagine. Should one land up like me housebound, I doubt their lives will skip a heart beat, their lives will just naturally go on. I know I am lucky, I am the first generation still heading into this bright new world where acceptance is automatic and apart from those with a desire to show off their most unattractive attributes, I love every single one of you and thank you all for letting me into your lives.

Please read my blog from 2 year ago – 20/09/2013 – Reaching the world

Another day another post and what happened to the rest of this week, how on earth did it get to be Friday? It has been one of those weeks when I have slept so much that I actually feel as though someone has stolen a couple of days from me at the very least. I don’t suppose it really matters but…

“I” have become “We”

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…..