Monthly Archives: January 2016

I want it so badly

Posted on by
7

I mentioned the other day that I had received an appointment to go for a breast scan. In this country, once you have passed the age of 50, it is one of the checks offered by the NHS for free. I did receive an appointment last year, but I chose not to go, as I explained a couple of days ago. For some reason, I have been putting off phoning them, to see if the situation of wheelchair access had improved. I find the phone at best difficult, and at worst, my worst enemy. I don’t know why, but my emotions react far more rapidly, when, I can’t actually see the person. I don’t fully understand the damage that has been done to my brain, but what I do know, is that tears appear when I least expect them, and frustration, builds rapidly, if, I can’t make myself fully understood. Hence, the fact that I normally ask Adam to make all calls on my behalf. So why did I decide that it was me who should pick the phone up instead of him? Well, because it’s me with the issues about going there, not him, it somehow made sense at the time.

Once again the girl on reception was rather useless. I am beginning to believe that all NHS receptionists are actually trained not to listen, as I have yet to find one who does. When I said that you’re not allowed to bring your own chair, when travelling by hospital transport, she more or less called me a liar, which I found really hard to get past, without losing my rag. I really don’t appreciate it when I am told I am wrong about something I know for a fact, I am right about. Every time I book an ambulance, I ask if I can take my own wheelchair, as it makes life so much easier, I am always told the same thing, no. It didn’t help matters, that she was another one of those people, who wouldn’t allow me to complete what I was saying, and answered what she expected my question to be, rather than just listening. As always happens in those situations, she was telling me things that I wasn’t interested in. I really don’t understand why people do that, as it achieves nothing. It turns out, that though that there are only two slots each day, put aside for wheelchair users. So they have canceled the appointment I had in February and are now sending me out another one, this time, for March. For me, that is a positive, as it gives me the whole of next month, hospital free. Annoyingly, though, those appointments are at 12:00 pm or ten minutes past, not as is best for me, first thing in the morning. Once again, I did try, but she said they were the only two slots for disabled patients.

I still don’t know how I feel about the whole thing. This whole business of arriving in a highly visible ambulance, right in the city center, at what I now know will also be lunchtime for many people, it really doesn’t sit well with me. Humans love to stare and I’m not comfortable, about being the one, they will be staring at. I suspect, that if they actually spoke to all their disabled patients who are affected by this, that the majority would feel the same way. As I said before, I fully understand the thinking behind putting this center where it is. It makes it wonderfully accessible for the able-bodied, but for the rest of us, it’s really not appropriate. When you arrive by ambulance at a hospital, no one pays any attention, it’s normal. In a city center, it’s something to gawk at. Last time I justified not going because I didn’t think there was a need for it. I know that reasoning doesn’t add up, any more than the one I came up with the other day. If they were to tell me I had breast cancer, it wouldn’t change anything for the better, just supply more people to poke at me, and possibly, a change to the already ticking clock. Before anyone thinks that I might be scared of this, well think again. I have gone through a breast scan before, and that time, it was because I had found a lump. It had actually burst before I reached the scan date, but they did it anyway. It really is just a combination of the above, plus this growing desire to be just left in peace, especially, from everything medical.

I have been finding this feeling growing lately. I don’t know what sparked it, or exactly when it began, but it is growing. In a way, I even now resent the time it takes each day to use my nebuliser, inhalers and even to take my tablets. Yes, I know it all adds up to only about forty minutes out of my day, but I do frequently find myself sitting in the kitchen, staring at it all and wishing it would all just vanish. It has now even extended to my psyllium pancakes. It stupid, I know that, but we can’t change feelings. Feelings don’t obey us, they are one of the few things that we can do nothing about, other than feel them. Clearly, I am not just going to stop taking any of them, I would just like to understand, why after all this time, this is how I suddenly feel? I simply can’t be bothered by this whole paraphernalia that goes with being ill. I have more than adapted to the lifestyle. I have adapted to the fact that I am housebound and all that goes with it, but right now, I just can’t stand anything to do with doctors, or the stuff they insist, that I need to take. The best way that I can put it, is, to say, that I want them and all their bits and pieces, to leave me in peace.

I guess that sometimes we just want the impossible, to be made possible. I yearn to have just even one day, one, where it wasn’t governed by an alarm clock telling me, it’s time that I took this pill or that. I was pleased when they told me on the phone that my appointment would now have to be in March. I was pleased because, I will then have had two whole months, without trips out to see doctors. Inside, I am screaming with a need to never go out and see any of them ever again. In the year I became housebound, it felt like I was at the hospital every week. I was seeing this person or that one, in the attempt to get my hand back working, so that I could once again go out. They failed. Over the following year, it slowly returned, but as it returned my tiredness increased ten-fold and my ability to walk, diminished. I might have had two hands, but I wasn’t able to go anywhere. Then came four wonderful years, when I didn’t see a single doctor, I didn’t leave here at all. I knew it was too good to last forever, but boy was it good. Then once again, my health went downhill so fast, they were back in my life, and there has been no escape ever since.

Peace, glorious peace. For someone who sees no one, goes nowhere, that should be easy. It should happen every day, but there is none, not in the way I am looking for it. I want it, but I can’t really explain it, other than that one word, peace, and that I know that I want it.

 

Please read my blog from 2 years ago today – 31/01/2014 – Loneliness

Adam didn’t make it home until long after I went to bed, I watched Eastenders and headed straight of to bed, with no struggling to stay awake just so I can spend more time with him. I have wondered often how I would…..

 

 

 

Not quite beaten

Posted on by
5

I can’t believe that I am still struggling after my activity the other day. The way I feel right now, is more the way I would expect if I had had a day out at the hospital. Being tired, I know is just part of my life, but no matter how I change the amount of sleep I have, or what I do in the day, recently, I’ve been even more tired than usual. It started a couple of months ago, but add in the effect of the increased Gabapentin and I am in a lose, lose situation, even before I added in excess activity. If l let myself, I don’t have the slightest doubt that if I went to bed right now, that I would sleep. With the new wake up time that I have, I thought allowing myself a straight eleven and a half hours sleep each night, would help me feel more awake. It appears though that the opposite is happening.

There are so many things that come with our health, just like the above, that leaves us sitting scratching our heads. Health often has one huge issue that we ourselves forget, it’s not always logical. Which basically means, there will always be elements, that will inevitably do whatever they want to. I have managed so well, until this point to control my energy levels. I’ve been ultra aware of my energy usage, tightening up on my bunching of activities, never just going to the kitchen for a drink, but going to the loo, cleaning my teeth and anything else I can think of, at the same time. I use as little energy as is possible, so, that I can complete everything I have to in a day, and not fall asleep in between each step of it.

Yesterday, I started wondering if I might have become lax, not paying enough attention to what I was doing. There was only one thing that came up quickly and stood out as an energy waste. I hadn’t realised how many times a day, I have to stand up, just to change the channel on the TV. No, I don’t have an incredibly old TV, just incredibly bad eyesight. To be able to read the names of the programs in the listings, I would need binoculars to see them from here. So once every hour, or more often, I am pushing myself to my feet, wobbling my way around the desk and out to the edge of my wheelchair, so I can use the remote control, then back again. It’s a total distance of fourteen feet, seven there and seven back, but the strain on my body, both arms and legs, clearly adds up. If I could change that alone, I believe, I would change a lot about how I am feeling.

I did look into this last year, but I was left once again with a problem. The solution seems to be an HDMI cable, running from the TV to my computer. Apparently once I instal that, I could see what was on the TV screen while sitting right here. Sounds simple enough, except, I can’t find out if I have and HDMI connection on my PC. So do I just buy a 15-foot cable and hope that one of the slots I can find is the right one, or just buy some binoculars? I was never one of those people who ever bothered about the media side of my PC, it’s not what I bought it for or was interested in and my brain just doesn’t want, to read any more stuff they call “help”, it just switches off and sleep becomes, even more, appealing. Why has life become so complicated? I thought it would be quiet, sedate and relaxing being housebound, it isn’t, it’s one small problem, followed by another. Most of them, like this, were never on my list of changes I ever thought that I would have to make.

I used to think that tired was a state of mind. That all you had to do was, give yourself a hard kick in the backside and get on with it. I did that for so many years, that I never even thought about it. This type of tired doesn’t work that way, it just drags you down and down. It does it because it’s not tired at all, it that monster called fatigue. Yes, I’ve adapted over and over to keep it at bay, to stay with my head, just above that line that says, “you’ve lost”. But, right now, I can hear it screaming at me, “Just stop, do nothing”. I can hear it, but, I don’t want to listen. I want to keep going, I want to keep living and if I stop, then what. Just occasionally, I try it, I do, I stop. It never lasts as I still have that other voice that says “This needs doing, get up, get going”. I fear, that if I totally stop, if, I give in for just one day, that I will disappear, cease to be me, and become, that invalid that I fought so hard, not to be.

I know fatigue, I meet it face to face at least once every day. Some days like today, it wins in tiny ways. In those gaps that I can’t explain. Those moments, that I find myself staring into space, with nothing in my sight and far less than that, in my head. I’d be happy to just be tired, to just be in need of sleep. Sleep cures nothing. It’s an escape, a place I go where there is nothing that needs doing, nothing that has to be said and the biggest blessing of all, I feel no pain. Yet, it steals so much of my life, I am wasting the time I have, by sleeping, that just isn’t right. My life is limited, to spend what’s left asleep, no that just isn’t right. There are things we can change, things we can adjust to make our life easier. Then there are things we want to change, but fatigue takes over, gets in the way and means everything stays the same. I’ve been here so often, that in some ways, it’s like an old friend returned, holding onto you tightly and tempting you fully, into its grasp. Fatigue is a well groomed and well-trained seductress, and I am ever weakening, messy human, what chance do I, or any of us, really stand.

So I will rest, I will tweak and adjust, and hopefully once more I will be restored, at least for a number of hours. There are no answers to this, because, there is no logic. Activity is a tiny factor, medications another, but health, is the biggest and there are no answers to that. I just have to find my way out of this pit, to climb back higher about that line and stay on the side of winning. A nap, another nights sleep, who knows it might just make the difference, this time, only time will tell. All any of us can do on a bad day is look to the good, and hope, that is what tomorrow will bring. You see, there is one weapon, one tool that fatigue doesn’t have, it, unlike us, doesn’t have hope.

 

Please read my blog from 2 years ago today – 30/01/2014 – Truly care

I have taken my first HRT tablet this morning, so now it’s a case of wait and see, not just on the hair situation but also to see if I feel any changes in my MS, the more I think about it the more sense it makes that there will…..

 

 

 

 

An unexpected truth

Posted on by
5

We kid ourselves over and over that we will learn the lessons that our bodies are trying to teach us, but nothing in life is that simple. We tell ourselves over and over that we can’t do this or that, but we keep right on doing it. We sit and nod our heads, as our loved ones reassure us, that they can manage and we have to stop pushing ourselves. We do all these things and then, we go right on and do it all over again. I have lost count of the times, that I have worn myself down, into a mear shadow, how many times I have made myself so ill, that exhaustion is of no importance, have I learned anything from any of them, well maybe a little, but clearly not enough. All my life I have been stubborn, I have been determined to learn every lesson myself, clearly I haven’t changed, and I have a funny idea that I probably never will. I have noted over the years, though, that the scale of my stupidity has shifted. I no longer climb ladders, attempt to spring clean the house in a day, or even to clean a single thing ever. The odd breakage probably had something to do with that as well. It’s odd how sobering a broken ornament becomes, considering the threat of broken bones isn’t.

If my thoughts are on the grandiose, my body has at least learned just how to put the brakes on, when it comes to my impossible schemes. A convenient set of spasms, a wobble as I try to stand, those everyday reminders that I’m not quite the person I was. So the ladders remain in the cupboard, the bleach in another and my brain busily comes up with an alternative, something more manageable, something that doesn’t need me to stand all the time, that will allow that feeling of completion, but won’t kill me, along the way. As they’re still on my mind and still affecting my body, let’s take those pancakes, as an example. Making pancakes isn’t a grandiose scheme, it’s an everyday task, it’s the normal, the sort of things that we teach our children when they first ask to learn to cook. So why can’t I do it? Simple, because I can’t make that mind shift, that step needed for me to accept, that I’m now that child, the person who can do nothing and has to have everything done for me.

The longer that I am ill, the longer that I have been thinking about this. My conclusions though are the thing that more than surprised me, and I know they are right because, we all know what it feels like, when that right answer, appears in front of you. We don’t learn. I don’t believe, that I learned a single thing about my limitations, if I had, I wouldn’t even spend time thinking about doing the impossible. I would have stopped still trying to work out a way, of making all those things possible. I wouldn’t in my head, still be creating new gizmo’s that might make this or that easier, make it something that I can do. The truth is, no matter how good the gizmo, I still would be able to do anything. So I haven’t learned, because if I had, I would just be saying OK, that fine, I won’t. If I had learned anything, I wouldn’t be torturing myself almost daily trying to do what I failed to do the day before. That’s not learning, that’s stupidity.

I haven’t even accepted my limitations, as accepting again means sitting back and not thinking. If you accept, then your not stupid. Accepting is a thought out, reasoned analytical process. It’s actually beyond just learning, as learning means you don’t stick your finger in the same flame that burnt you before. Accepting means, you take that lesson onwards in life, and by association, know not to put your finger into or near anything that is hot. A reasoned analytical process. So to be able to accept, I must have already learned, and I’ve already proved that I haven’t. I know that I have accepted my illness, that I have accepted to some extent my limitations, as otherwise I would still be trying to go up and down those stupid stairs that keep me apart from the world. So there must be two levels to acceptance, the one that we learn and the one that is a blind reaction, or is it? If it were a blind reaction, then we would do it to everything, and that just isn’t the way humans are, so something else is at play, something else, is changing our behavior.

At best, if anything, I have grown accustomed to not being able to do things. Over time, I have grown used to not having the energy, to not having the strength to do those things that I want. It has been a long slow process. If I sat Adam down, and we discussed it, he would agree with every word I have written. He has spent years pulling his hair out, trying to stop me doing, what we both know, I’m just not able to. He eventually gave up, as he learned that he wasn’t able to stop me, any more than I was. The problem is, we can’t unlearn. Once you know you can do something, unknowing it, doesn’t exist. So we slowly become accustomed to failing. We become accustomed to not have the energy, to not being able, and use to, a more sedentary life. It takes time, but just as I am accustomed to being alone all day, I am accustomed now to not rushing around cleaning everything in sight. Once it really hurt not being able to do those simple things, I still wanted to, but I didn’t. Now it’s because I am used to doing this, and this is what I do. We adapt, that is what people do, we adapt to our limitations and modify our expectations. Just like being forced into changing your line of work, you adapt, and in time, you become accustomed to it, most even find themselves happy in their new role. Disability, is just the same, just more dramatic.

Letting go, handing over the responsibility of life, is hard at first. Again, Adam can vouch for that. At first, I made his life hell, followed him around, double checking everything, but as I became accustomed to it being his role, not mine, I let go. Humans are amazing, we can adapt to anything, we may not want to, but in time we all do it. With the right attitude, we can even enjoy it. What’s better than having someone who does everything for you? Clearly, doing it yourself, but when you can’t, it’s the greatest gift in life we have. We just have to remember to tell them so, every now and then. I have lost count of the number of things that I have agreed I am no longer able to do, as logic is a powerful force, but I have always adjusted to the new reality, not learned or accepted, but adjusted. The future holds some that right now, I don’t believe I will ever be able to adjust to, but then again, I never thought that I could have adjusted as far as I have, yet here I am. Unlike the process of learning or accepting things, you don’t actually know your adjusting until you look back. At the time, you think you fighting, showing this disease who’s boss, but we’re kidding ourselves. All we’re doing is fighting the process that will eventually always win, we always adjust. As for the future, whether I like what lies ahead or not, whether I believe that I can live the way that is predicted for me, I will adjust, but how far. Is this game unending, or is there a point where we can adjust no more. As yet, I can’t answer that, but who knows, as I said, humans are amazing.

 

Please read my blog from 2 years ago today – 29/01/2014 – How “it” changes

There are some strange things that I have become aware of as the years of illness have passed, one more than any that you simply forget how “it” used to feel. That “it”, well it is almost everything, from how……

Pushing it

Posted on by
4

I destroyed myself on Tuesday, I pushed myself beyond any point that I have passed in the last few years. I was so determined to get those stupid pancakes done, that I went way beyond what I should have and I knew it with every single one that I placed in the pan and shaped. It is the first time for about 8 months that I have done this job alone. Normally, I make the dough, let it rise, them I cook the first half and then Adam the rest. Even that was a struggle the last time, so why I thought I could actually do it all alone, without some huge backlash, I don’t have the slightest idea. I was clearly in one of my stubborn modes, as there wasn’t a single reason why I couldn’t have gone to bed early, but no, even then I was still pushing myself.

Yesterday morning, even before the alarm sounded, that I was still tired. I had woken at 7 am, a point that I would have just stayed up normally, but after going to the loo, I returned to bed and fell asleep instantly. That is something that is not normal at all and I was amazed when the alarm actually sounded an hour and a half later. It even took me several attempts to pull my pyjamas on. I just couldn’t work out what was going so wrong, as I am so careful every night when I take them off, to leave them in such away, that there is nothing to think about at all, in the morning. I started by getting tied up in my top, it’s a simple drop it over my head design, but as soon as I tried to lean forward to put my trousers on, I knew it was wrong. It was on back to front and the back of the neck was cutting into my throat. I took it off, switched it around and put it back on, then it was the turn of my trousers. My luck was out there too, the first leg was fine, but when I tried to put my second leg in, it always landed up exactly where the first was. I eventually manage to work out that the elusive second leg was inside out and just flapping around. When I reached the living room, I turned the TV on and in its first light, I discovered my top was on inside out, the final proof of just exactly how awake I was.

It was a  struggle to get through the first half of the day. Telling myself that I was fine, that I was going to catch up with all the things I had missed the day before and that I would be just fine. I did manage to actually fool myself for a while, but the truth soon took over and I had to admit it. I had been destroyed and that Adam had been right last night when he said that in future, he would do the whole job for me. Yet another thing that I have to hand over to him, yet another thing that I’m not capable of doing. This isn’t laziness, this is just a fact of the illnesses that I live with. I am not up to doing the basically simple job, of makes psyllium pancakes or anything else really. I must stop calling them pancakes, as they are in fact more a griddle cake, just a rather thin one. Whatever the name, it’s another job ticked off as impossible for me to do alone any longer, without destroying myself. Even now, I’m still wiped out, my whole body objecting to just being awake and upright. But I’m still pigheaded, even when I feel like a shadow of my normal self.

I have at last managed to get 4 quotes for the cost of my funeral. I have been shocked by the differences in prices, along with their persistence of trying to push me into taking more than I want. I know that I shouldn’t really be surprised, as after all they are businesses that require to make money. The most expensive one, for just the cremation here in Glasgow, not including transport for my ashes to Aberdeen or the internment in my son’s grave, is £2700. The cheapest, which include all of my wishes and the transport of my ashes to Aberdeen, but not the cost of opening the ground, their getting that for me, is just £1000. Business or not, the difference is incredible and I actually find, unexplainable and ridiculous. The cheapest company didn’t just supply a good cost, they also took the time to read my email in detail and to answer all my questions. Unlike some, that simply tried to push me into one of their plans, which was miles away from what I was looking for. Clearly like everything else in life, even our death is worth shopping around, before we make any decision.

I had thought in the past of taking out one of those insurance plans that are constantly advertised on the TV. You know the ones that say are suitable for those who are 50 plus, and that you don’t need a medical. They may mean that you leave the cash for your funeral, but if you don’t know what those costs are, how do you know just how much, to pay in. Personally, I would recommend doing things this way around instead. It doesn’t only mean all the costs are covered, but you can make all the arrangments down to the tiny things, that you want. Then when you do die, all your partner needs to do, is make one phone call, and everything is actioned. No hassle, no not knowing what to do, who to turn to, if you have the funds required. It’s all removed and it’s all done. At worst, there might be a small sum on top, for the increased costs, that everything has over time, but my up-front payment is invested in a fund, that should cover the worst of the increases and it’s not going to bankrupt him, or leave him, even more, distressed and lost.

I have decided that once I have all the details sorted out with the funeral director, that I will put together an envelope containing them all, the funeral plan to be redeemed for their payment, the plot deeds and two letters I want to be sent to my family once I am gone. Everything in one place along with a list of the legal steps that Adam will have to take, as I have discovered over the last few days, there are several of those as well, but everything will be there, in one place. I honestly believe now, that it doesn’t matter what our wishes are, we all should do this, even if you are just 20 years old and don’t expect it to happen for years. It’s really not fair, to leave it to someone else. The simple fact that I have this process on the way, to my surprise, actually feels good and feels right. I would go as far as saying that I feel better in myself, because I know I am doing the right thing, not just for me, but for Adam and my daughter Teressa as after all, they are the ones who will be left behind. Once done, we can all get on with doing what we’re here for, living.

 

Please read my blog from 2 years ago today – 28/01/2014 – Knowing me

I woke this morning for some reason the closest to being awake than I have felt for a very long time now. I wasn’t jumping and hopping across the room or anything silly like that, I just felt reasonably refreshed as you would…..

Second class or lower

Posted on by
22

Sometimes, it is good to stop, to take a little time to look at yourself, through the eyes of others. It is something I have tried to do throughout my life, but I think, I have reached the point, where I really have to stop doing it. It wouldn’t be a problem if the world understood what living with a chronic illness really means. Today is a perfect example. Today is pancake day, that means I have to spend a large part of it, making my Psyllium pancakes, essential to keeping my internal systems working. I have laid out before the work that it takes, the time that it takes and just how exhausting the whole process is to me. Trust me, this is probably the day in my current life, that has to be carried out frequently, that I hate. Through the eyes of others, it is one of those so what situations, yes, it takes a little time, and some work but anyone can do it, just get on with it. Through their eyes, I am just being lazy. That is the problem when you live with an invisible illness. It quite honestly doesn’t matter which one, if your illness doesn’t have you looking ill, drawn and haggard, then there is nothing wrong.

Even right now, if I let someone, which I normally don’t, to take a photo of me, apart from the wheelchair, I look fine. The fact that I can produce a daily blog, send out tweets and still be part of the world, just all adds up in the eyes of some, to my not being ill. Yes, I can see that. I can see it with ease and it worries me. It wouldn’t have worried me 30, 40 years ago, then it didn’t matter how you looked, if you were signed off by a doctor, who said you were not fit to work, the majority of people accepted it. There were a handful, as there always are, who would look at you quizzically, but they were the minority. What happened to this world, what changed in this world that means being ill, seriously ill, diagnosed with conditions that are killing you, that the majority now will question it? Worse still, our UK government even now question it. I clearly started questioning it a long time ago, as you will have seen from the picture I placed at the top of my introduction post, but something has changed out there, something has made the general public cynical about the whole subject of ill health.

Clearly, I don’t know what the situation is outside the UK, and my thoughts are being formed by what I see on the TV. What is coming across from the news, documentaries and other programs is a perception that we are all at it, we’re scammers who deserve to have our benefits taken from us, and that we should get off our backsides, and find a job. For that, I do to some extent blame our UK government. Their stance and treatment of the chronically ill is shameful. If a doctor has said this or that is wrong with a person, no one has the right, to question that fact and declare them fit for work. But I am not here to shout about politics, as I said, I see that as a factor, but that’s all. I actually think that the real problem is once again down to the media. I mentioned the other day that I was sat listening to a show on health. It was discussing all sort of things, from diet to genetics, it is the type of show that I watch frequently. I think that they are a large part of the issue, as they give the impression, that the majority of illnesses are now curable. Along with the amount of research, that is being declared almost daily as the new miracle cure, the impression is being fed to the masses that once again, the medical world has the answer for everything.

If you are a person, like the majority, who has had nothing to do with anyone with a chronic illness, other than those of old age, that Granny or Grandpa had, I can see where this impression is coming from. 40 years ago, no one heard any of the things that are now discussed freely on the TV. All they heard was what the individual told them, and people were more trusting. If someone said “I have MS”, they only thing they might ask, is “What is that?”. These days the names of conditions are banded about daily, but what they don’t say, is what it means to live with that condition, beyond the names of the symptoms. Hearing about different conditions is a double edged sword. On one hand, it raises the profile, which might be good, but on the other, it makes even the rarest conditions, suddenly mainstream, just like a cough or a cold. If that condition is mentioned alongside a possible cure, the “possible” is forgotten and the impression that remains is that all version and variable of that condition are curable, even when they’re not. I know that one well, my form of MS, PRMS doesn’t even have one single medication that has the slightest effect on it. Yet other forms of MS can find great benefits from an array of different drugs and MS isn’t the only condition this is true for.

Horrifically, on the news today, I heard that the rate of attacks and abuse towards the disabled is rising. Just as it is rising, so is the rates of discrimination towards us as well. Those are the worst end of it, but it feels as though, it is in line with the general attitude towards those who are ill and that we should just be getting on with earning a living and not taking from the state, regardless how ill we are. All that was part of what was behind my starting to write and to be on Twitter, but in the three years that I have been doing all this, it somehow feels as though things are worse out there than they were three years ago. I can’t put an exact date on it, but without a doubt, this change started somewhere in the 80’s and it’s growth isn’t slowing down. Don’t get me wrong, there are some wonderful people out there, people who are genuinely caring and understanding, but not as many as there once were. How we turn this around, put the brakes on and get the truth of not just the odd individual but the masses out there, I don’t know.

From time to time, the soap opera’s will introduce a character who has some illness, and they compact their story into a few short months. The most recent I can think of was a story line on MND. At first, it was well done, it showed the main symptoms that were visual, but, the biggest problem was the person they chose to actually have the disease. He was the nastiest, most unlikable person you could think of. His becoming ill was seen by the majority of those in the storyline as deserved. As though he was getting what was due to him. To me, this didn’t help our situation at all. Even his death was treated without respect and he is right now, hidden inside a wall. What could have been a wonderful opportunity to really show the suffering and pain, the effect of a terminal illness on everyone, not just the patient, was lost. It landed up as more a moral tail, be a nasty person and this is what will happen to you. Not helpful in any way.

I know the world is full of things that just don’t get the time and attention required to be shown in true depth to everyone. That is why I chose not to use my conditions as my pivot, but the whole spectrum of chronic illness. I don’t know how to change the world, but somehow, we have to put the brakes on, stop the decline in how we are treated, thought of and spoken about. None of us asked to be ill, none of us would choose this life. To choose it would be madness as somehow at some point we diminish, we become second class citizens and in some people’s eyes even lower. Who would choose that?

 

Please read my blog from 2 years ago today – 27/01/2014 – Being you

If anyone ever wanted proof that I am not the sort of woman who stares for ever at herself in a mirror, well here it is. Following my post of yesterday I stopped and actually looked at my face in the mirror, really looked and…….