Worlds change

I was talking to my daughter earlier in the week, she was doing one of her check-up on Mum calls, but, it left me with a thought, that made me realise just how cut off, I am, from the world. To be honest, realising that was actually quite a shocker for me. I am one of the few who actually watches the news channels. No, I don’t mean for half an hour twice a day to see what is happening, I watch it. The News has always been important to me, but when I became housebound, it became an important part of my day. The first two hours of every day, is nothing but News, an hour plus around lunch time, and another hour of so around tea time. If something major has happened, well it’s not unknown for me, to stay fixed to the News channel for most of the day. There is something about not being out there, that has made the outside world and what is happening in it, essential viewing. I don’t suppose that that is too surprising really, but even politics has ceased to be a turn-off. The one thing that hasn’t changed, is I hate with a passion, the so-called local news, note, I don’t even give it a capital letter, it doesn’t deserve one. But, I digress. My need to be up to date, to know the latest state of the world, has become one of my driving forces. This week, with the terrible terrorist attacks in both France and Mali, and the Russian airplane being brought down by an explosion last month, has more than doubled my viewing. Teressa said something to me that made me realise something, I’m not connected to the world at all.

She has been talking for a while now about the possibility of a new job, which at the moment although having been offered it, she hasn’t totally decided whether or not to take it. John and she, have lived in London ever since they arrived in the UK two years ago. This job would mean them leaving the capitol and moving to a part of the country where they would be able to fulfil a dream of theirs, to buy a home. As we spoke, she out of nowhere added a new reason to move, neither of them, feels safe in London any longer. A few years ago, I would have thought of that, less than ten minutes after the news of Paris had settled into my brain. It never entered my head. I came off the phone, feeling cold at my detached state. How had I become someone who thought no further than the place I am sat? That in reality, though, is just how it feels. Despite all my efforts, to know the world, and what is happening in it, I have not been seeing the bigger pictures. Don’t get me wrong, I have a huge amount of empathy, for all who have been injured or lost their lives, and I fully appreciate, the severity, and the snowball effect, of what is currently happening, but I am still isolated from it all. It is as though the walls that have been surrounding me for the last 8 years, have slowly been getting thicker and thicker. Teressa’s reminder that she, her husband, people I know and love, still face the dangers of life, even though I no longer do.

I don’t know when the walls started to get thicker, how my feeling of isolation, somehow meant, that everyone else was also in glorious isolation too. I have lived for so long inside my cocoon, that I had forgotten what it means to actually be outside it. We all measure the lives of others, using our own as our baseline. My baseline is so far from the norm, that my measurement of the world has become warped by it. I had forgotten what it feels like to walk down a road, one moment in the warmth of the sunshine, the next, inside a shadow so dense that it has turned the world cold, as my life, is now spent always in the sunshine. I have nothing to worry about outside of me. I am under no threat, from anything other than my own body, there are no shadows. I have no job to lose, no children to pacify, no meals to cook or shopping to do and no bills to pay that aren’t covered. I have no need to look over my shoulder, to question the footsteps behind me, no friends to disappoint and no enemies to plicate, none of the realities of life, touch me any longer. I don’t quite live in a gilded tower, more a gilded cage, where someone managed to slip the cover over when I wasn’t looking. Is it any wonder that no matter how much I have tried to stay in touch, that all I have actually done, is to constantly learn the events, but not their true and ultimate impact. Yes, the facts of life are important, but so are the emotions, there is a clear danger that I had missed. When you live looking outwards, but only feel inwards, the balance is gone.

Semi-isolation, is not, a normal state for a human to live in. I am sure that I would be one of those people that trainee psychologists would love to do a case study on. I can just hear them squealing in joy, as they sat down and started to draw up a framework of questions and area’s to explore. What impact do 8 years or seeing few others than just one person do to someone? How psychologically balanced can someone remain without the normal interactions and pressures of life? I can hear them because I, and Adam, have heard the other side. The total disbelief that I can possibly be happy, content and not drowning in depression. Clearly, there has to be an impact, things that I haven’t noted, felt or seen, there must be, it’s only logical. The more time that you spend by yourself, the more you do look inwards. It isn’t meant with any malice, but it can be hard at times to hold onto, that those faces on the TV screen are real people. People with lives, people with feeling, people just like I once was, part of a bigger more vibrant world. At times, they even slip for two-dimensional all the way down to one. I have no line of reference to them, now way of connecting, as not only does the outside world often look alien now, it also sounds and feels it. It’s hard when your part of it, to understand what I just said, but it’s a little like having been in a coma for 8 years, one where some information filtered through, but still the world went on without me. Fashions change, people came and went, even some building managed that one as well. Words have snuck into the language that once didn’t exist, the entire make up of this planet, has changed in that time, and all I have had to keep up with it, is my husband, my TV and my PC. A vast quantity of available knowledge, but always controlled by what I knew, when I was last out there. How I react to that world, has clearly been changed by it as well.

Analysing my own life, is sometimes hard when you look at yourself with anything other than a mirror, well what you see isn’t always as pretty as you would like. Mind you, that sometimes happens with a mirror as well. We all change over time, but those changes are influenced by what surrounds us. I’m changing, but my surroundings, circumstances and company are identical, not changed in any way in all that time. As time goes on, I am sure I will miss as many of those changes as I discover. The good thing about the ones you don’t like, you can always change them back, which my unchanging world actually should make it easier for me, than it is for others.

 

Please read my blog from 2 years ago today – 21/11/2013 – The purpose of accountability 

It has been a strange sort of week, TV isn’t helping by being filled with little else than one of my favourite TV programs ever, “Dr Who”. I always thought that it was one of those shows that you grow up with…..

No one hears

I guess, everything in life is relevant in differing measures, it all depends upon what you are comparing something too. If someone were to ask me at this second, “How are you?” I could, in all honestly, give several totally different answers to them. It all depends on whether I am comparing it to the worst I have ever been, or the best I have ever been, or just since the last time we spoke. In fact, I could play that game forever, using as many different points of reference I chose. Yet, hardly anyone ever asks, “How are you compared to ……..?”, that, I have only ever heard from a Doctor, mind you, I suspect they get fed up with some of the silly answers people give. So, “How are you?”. It’s such a standard, yet stupid question, and one that few really ever want the answer to, it has somehow become a greeting, rather than a genuine question. I have so often thought that is was because even total strangers, want us to see them as caring people, when so few, genuinely care, about anyone outside their personal circle? How is it, that our world has become such a false place?

I have often been tempted, but for some reason refrained from actually doing it, just to answer something totally ridiculous, just to see if they even notice, or if they just move on as, though, I had said “Fine”. I know for a fact, that people don’t hear what others say, they hear what they expect too. Working in Telesales for a number of years, proved that without a doubt, on many occasions. Salespeople don’t always have their brains switched on and just go into auto. I once, personally, answered a call while daydreaming with “Good morning, I love you” and I heard one of the sales girls telling a male customer, “We have checked the size of your balls”, rather than “bills” and in both cases, the customers, never said a thing, they, didn’t hear it. Unfortunately, for both of us, everyone around us did. Most of the time, if your tone of voice is what they expect, and the majority of what you say is correct, some of the actual words, don’t really seem to matter. I am convinced that in many occasions, we could answer whatever we wanted, to that question and get away with it, as our answer to them, is as irrelevant, as the actual question.

Like most people born in the 60’s, my first real memories are of the 70’s. As odd as that decade and the one that followed were for me, I do still have the feeling that in general, people were actually more genuinely caring. There was far less of the shiny false caring veneer, that I feel fills the world these days. I can remember several occasions, one when I was pregnant, that I found myself somehow on the ground, probably some of my early MS attacks. Pregnant or not, on all occasions when I was outside, people ran to my aid, and I do mean people, not just one caring soul. Everyone within a 20-foot radius were heading my direction, before, I actually hit the ground. In the years prior to my being in my wheelchair when out, I took several falls. I remember one, no one came to my aid at all, although, there were people around. Another had been just after hailing a taxi, as I went to open the door, I went down. There was no one around, the taxi driver must have assumed I was drunk, and drove off, leaving me there. On another, an elderly couple headed to help me. Once they were talking to me, two younger people stopped to help. I couldn’t help wondering, if they would have bothered, if the older couple, hadn’t been so clearly, unable to assist me. From the early 80’s to the early 2000’s, the world changed, and not for the better. Back in the 80’s, I don’t remember anyone asking “how are you?” in the 2000’s, they had stopped caring and asked it all the time.

I’m in pain today, I don’t know what triggered it, but for the past week I have been once more been really suffering from my intestine. For the last six months, since I have been eating the Psyllium pancakes, everything has been moving through me with so much more ease. Not painlessly, but with ease, that to me was enough. Then suddenly two weeks ago, I started having those area’s of intense pain again. The worst was down in my appendix area, I knew because I had felt it so many times before, that it was nothing, to worry about. All I had to do was grin and bear it, occasionally, with the assistance of a booster pill, but I could bear it. Every time they happened, I was also aware that other things were happening too. My diaphragm would go tight, or I would have tremors in my legs, other small but unconnected things seemed to come out in sympathy. As whatever had been sitting there producing pain, moved on, it would ease until it reached the next corner, then it would start all over again, 12 hr of peace, 6hrs of hell. That has been the cycle ever since this bout started. Today, it is the turn of the top left-hand corner of my stomach, it feels like there is a pumped up basketball lodged tightly, just under my ribs. I put up with it for about an hour, then my patience ran out and another blue pill slid down into my stomach. I have tried hard to work out exactly what might have triggered this, but there is nothing I can think of, which is just so annoying.

I truly hate it, when you think that you have found an answer and that you are actual, if not in control, at least in harmony with it. When I introduced, as recommended by the consultant, the WD40 of the food world, it was like adding a nice comforting duvet. It took all those horrid spiky and often blinding pains away, and soothed it down to an ache, or a grumble, that for me, was more than livable. Other than when I have been on my baking bouts, I don’t think I have even mentioned it for several months, so when it did reappear, well I thought it was a one-off, a tick in a box that said, nothing to even think about. Yet here I am two weeks on and I have been forced into using an eraser. This morning, I haven’t even been able to sit still, in the same position, for more than a few minutes. The longer I am stationary, the more it felt as though the ball was going to crack my ribs and explode out into the room. The really confusing things is, although this is the same pain I was getting when my intestine was at a total stop, everything is still moving. Possibly a little slower, but it’s still moving, still leaving me painlessly and if it wasn’t for this increased and persistent pain, I wouldn’t be mentioning it now. All that makes any sense is, is that it matches up with everything else, as my symptoms have been getting worse, this pain has slowly increased as well. Last night, as I was trying to coax a disobedient left foot onto the rest on my wheelchair, I had to stifle a scream. When your leg muscles don’t want to work, for some reason, without knowing it, you start to use your stomach muscles. As I did so, I discovered or possibly created, a pressure point. As though using the muscles, pumping up one of these ballooning areas, it felt as though it was both overfull and stretched to its limit, simultaneously.

I know that it does take around 14 days for my intestine to clear through, so I initially had my fingers crossed, that it was just a matter of waiting for that to happen. A hope that last night been shattered, as the pain I created, was right back at the beginning of the pain path, where it started two weeks ago. I’m not sure, if I should just continue as normal and hope that it settles, or to intervene, up my Physillium dose, or possibly add a laxative, to clear everything through, if you like, resetting the system. I just fear that that might be an even more painful process. If someone asked me today “How are you?”. Do you think I could get away with answering “Perplexed by the lack of eupepsia”, “Musing my internal affairs”, or possibly “Flatulated and pensive”? Would they hear, or notice any of them?

Please read my blog from 2 years ago today – 16/11/2013 – Freedom

Ever since I started having the spasms from hell I have also been sweating buckets, I didn’t actually think so much liquid could come out of my skin when I am sat totally still. I didn’t even sweat that much when……

We’re lucky

There was something on TV yesterday that set me to think, just how lucky I am to be who I am and where I am, both in time and location. To some, that may sound odd, given my health and the fact I am housebound, but with a little thought, it makes a lot of sense. You don’t have to go that far back in time, to realise just how different my life might have been just 100 years ago, the further back you step, the worse it would have been. I simply can’t imagine what it would have been like in reality to have lived in any other time than the one I do now, with the state of health that I have. Actually, it is probably more truthful, to say that I don’t want to imagine. In many regards, my life is a tough one, if you look at it purely from the angle of health, but my health isn’t my life, it’s just part of it. I have a nice home and a loving husband. My health care is both free and there to help whenever I ask for it. The government supply me with an income, granted, it’s not a fraction of what I once earned, but it does keep the wolf from the door and with what Adam earns, we are comfortable. No, we can’t afford to splash out on luxuries, or pay for the latest gadgets, but we are fed and sheltered and own our own home. That is one of the things that actually goes against Adam and I. If we didn’t own our flat, if we were living in a rented home, not only would they pay for that, I would then be able to have access to a specially adapted home, at a much lower rent, which they would still pay for. When it comes to our mortgage, they won’t pay a penny of it, I get their logic, but it somehow isn’t fair. That though is, as they say, another story. As things stand at this moment, I have the means to live comfortably, in my eyes. I not only do I have the necessary, but I also have the means to remain entertained and to keep my mind active, if not my body. It isn’t a bad life. 100 years ago, without a doubt, I wouldn’t have been sitting here saying the same thing, although this very house was standing back then, we wouldn’t have afforded to own it, or rent it.

It is easy to forget, just how lucky we are, to be who we are, and where we are. It doesn’t need time travel to prove that, just travel around the world. Whether it is time or location, the possibility of being both homeless and a beggar, is high. I do quite honestly get angry at those who constantly complain that they don’t have this or that, all of us in the UK, have more than those in our position elsewhere. What we are given by the government is meant to be enough to keep us safe, fed and warm, not to supply us with iPads and caviar. There is one test that I think, I know, how everyone’s will answer, and it is a sign just how much things have changed. Think back 30 to 40 years ago, how many people did you see out and about in a wheelchair, or with a walking aid? If you did see someone, how does your memory of them compare to now? Other than the odd one or two, who always seemed to be missing a lower limb, I don’t remember any. Oddly as well, their clothing and personal hygiene states were always poor, most likely due to lack of assistance. If I go back to my childhood, I never saw a single one, outside of our minister who had had polio as a child and used calipers. Even in as recent a time as the early 70’s, the sick were still hidden away, not part of the world and often forgotten by even their families, as an embarrassment, or a sign of weak blood. I know that, as it happened to one of my aunts. She was bundled off to a seaside care home due to depression, never talked about again, and absolutely never visited. If there is such a thing as a good time to be chronically ill, this is it.

When you are locked into a world of pain, it is hard to remember things like that. To even think, that life could have been worse, or still is for others, who are in exactly the same position as we find ourselves now, is difficult. It is so easy to just see ourselves and no one else, not because we are selfish, but because that is what pain and illness does. Even if you have had nothing worse than just a cold, you know that feeling that the world has vanished and you and your misery is all that matters. I guess, it is simply our brains taking over and telling us that there is nothing, more important, than making ourselves better. Which is fine if you have a cold. When you are chronically ill, there is no getting better, this is just more of the same and far worse to still come. You can’t remain locked inside forever, as that is when life ends. Living has so many facets to it, and somehow, our health reduces it to just one, ourselves, but if you stay there, you’ve lost everything. There’s no doubt in my mind that, that, is why it’s so important to keep working until you absolutely can’t. When you have to stop working, well, you have to replace it, we have to find some way of breaking out of what our health, has forced onto us. Some way of staying part of the world that has been stolen from us, and if that’s not possible, to build a new one.

Even though I push myself to stay part of the world from inside my home, I often still feel just that bit isolated. Not because I am alone, but because I feel I am missing the normal everyday realities of life. Watching the news and keeping up with documentaries and lifestyle news can only replace so much. I miss the joy of watching things change and evolve, to watch people, see how they behave and what their lives hold. There is a joy in just seeing life written on another person, as we all show far more than we think. How we dress, do our hair, react to those around us, our body language and expression, all tells a story, a story it’s fun to unpick as they pass. It is hard to hold onto the fact, that if, I were to step outside and go for a walk, even just in my local area, that much of it, I wouldn’t even recognise. In 8 years, buildings have been erected on what was once wasteland, gardens have been landscaped or absorbed into the houses themselves. People have come and gone, faces I have never seen before, would be looking back at me and I would hear voices speaking languages, never heard around me in the past. Shops, will have gone and new ones arrived, what I would call my neighbourhood, is probably as alien to me now, as any other area, in any city, anywhere in the world. But the oddest thing, the oddest things would be accepting that it is me, who would be the alien, in their world, despite the fact, I haven’t gone anywhere. It doesn’t matter how much I try, my health has won, it has cut me off from much of normal everyday life, yet still I count myself lucky.

Just as I check my posture and my mood, I also have to check myself from not ever feeling isolated, or alone. You don’t need someone physically sharing the same space as you do, to not be alone. So no, maybe I can’t go out and sit in a cafe, to just watch people, but I can bring parts of those people to me. I can continue to learn in other ways, to be in contact mentally with those who wrote the history I love and the people who lived it. I can continue to chat when I want to with people, not next to me but around the world. I have more people now than I have ever had in my life before, who know my name, what I stand for and what I think. I may not be in touch directly with all of them, but every single person who likes, favourites or sends me a comment, makes me smile, just as if they had smiled at me in the street. I could sit here and grieve for all I have lost, or all the things I think I should have, but I don’t, I sit here enjoying everything I have. I am lucky, I am incredibly lucky to be just who I am, just where I am, and in the time I am. I don’t have to be able to get out of this flat and unlike those of the past, I’m not mistreated, hungry or facing dying in a loveless world that want me here, for only what they gain from me, money for my keep. All of us who are ill today with no possibility of that ever changing, are the luckiest who have ever been in our shoes. Admit it, life isn’t that bad, it may be painful and not perfect, but we’re still here, and on the whole, because we choose to be.

Please read my post from 2 years ago today – 23/10/2013 – The changes you don’t expect

So much for making plans and setting out on a day where I thought I knew what would happen next. I normally shower in the afternoon but I had decided that from today I am going to shower in the morning just after I had…..