Think what you want

All I want for next Christmas is a brain, well, I clearly didn’t get one for this Christmas. One simple task, that was all I had to do last night and guess what, it went totally wrong. Mind you, it did introduce me, to the totally new experience, of sitting on the settee, holding a crystal glass filled with frozen peas, sweetcorn and carrots. You guessed it, I burnt myself. All I had to do was take something out of the oven, add a topping and pop it back in and I couldn’t even get that right, despite making sure I was holding a thick towel in my hand. The mistake started 15 minutes earlier, I had placed a bowl holding some camembert into the oven, but as I placed it on the tray, I forgot to take out of it the handle needed to bring it out of the oven. No problem, I thought, as I returned armed with the towel. The first thing I did, was to put the now incredibly hot steel handle on the counter, so it would be cool when Adam came through, to take the cheese out when it was ready. I opened the top of the cheese, removed the covering rind, then sprinkled the topping on. Then I reached over, picked up the handle, so I could put it safely back in the oven. Spot the mistake, yes, I picked up a roasting hot steel handle with my bare hand. Why? I haven’t the slightest idea, I had the towel sitting on the open oven door, but I picked up and clenched a piece of red hot metal. Clearly, it isn’t the best thing to do to any piece of bare skin and I can actually still feel a couple of the points where it made contact. I did the right thing and ran it under the tap for a minute or so, and it felt OK. It wasn’t until about 20 minutes after I had actually eaten the cheese, that it really, started to hurt. I don’t know if my hand had just been dead, earlier, or if my senses were suddenly doing one of their hyper tricks, but it was incredibly painful. Hence, the glass filled with frozen vegetables. Trust me, if you burn the palm of your hand, it is the perfect tool, as it reaches every part of it at once and stays frozen longer than a plain glass.

Memory is one of the dangers of cooking for anyone with brain damage, but it’s now the reason that I don’t normally cook anything. Without a shadow of a doubt, I will either burn myself, or forget an ingredient, or even the fact that was cooking at all, until the smoke spreads throughout the house and finds me. Last night, was a typical show, of how dangerous a cooker really is, when it comes to me using it. I was happy to do it last night as Adam was in the house, what could go wrong, he was there to keep me right. I had forgotten that doesn’t stop my brain from finding some way, no matter how unlikely, to make it go wrong. Looking back, I honestly believe that my feelings were numbed at the time. I have this image in my head, that says there was a delayed reaction, almost, as though it were my eyes and delayed memory, clicking in the facts, rather than my feeling the pain. My poor hands have been beaten, dragged of doors, smashed into walls, burnt and generally mistreated to badly in the last few months, I’m a little surprised, they willingly still do anything for me at all. Yes, they object, the knuckle joints pop out of alignment whenever they choose, and I wake every day, with them so stiff and unable to flex, that getting dressed is a trial, but they still work. With all the sensations now screwed up, my treatment of them has just got worse, because I no longer even know I’m hurting them. I guess that I need to start accepting that cooking is one step too far, but I am really finding that one hard to accept.

I thought that if I stuck, to things that were in the oven, or that I had to sit over, as in the frying pan, well I was safe. The oven is far more forgiving on a mind that forgets anything has been put in it, well, at least for a while anyway. If you frying things, you can’t leave the room, not even for a minute, not even just to do something online. There has been the odd mild burn, a wrist caught on the lip of the pan, or the edge of the oven door, but mainly it’s been safe enough. I didn’t see this one coming, I didn’t even consider it. Even though I know without a doubt, that the lesson of this accident is, either plan better, or just don’t do it at all. I bet you, I will be cooking something again within the next few days. It is without a doubt, one of the hardest things to totally give up. I can go for months without doing it, then I have some bright idea, and I’m off again, wasting more food than I eat. It is part of the problem of being on my own all day long. Adam will do anything for me, if, I let him, but he has to work. It is one of those facts of life, that I think of eating something that needs cooking, when he isn’t around, If you think about it, I am never alone for longer than 4 hours at a time, I could wait, but I never do. The problem is, I used to be a great cook. Part of me, just can’t believe that I can’t do it any longer. It’s that part that taunts me, saying things like “A 5-year-old could do that!”. That’s part of the reason I don’t leave my PC that much, you’d be amazed what a 5-year-old, thinks it can do, that I can’t.

Being an adult, used to be fun, now it’s one big danger zone. Clearly, I’m not ready to give up on the cooker, maybe I should be, but I’m not. I guess it’s like everything else, I will eventually just decide that it’s that time and it will go. You can be lectured by OT’s and family forever, the truth is, we know when the cost is too high, and that’s the point when it will happen and not before. Just as I knew, the time for the wheelchair had arrived, or that I couldn’t climb ladders anymore, no one told me, well that’s a lie, loads of people told me, but I decided, because I’m not as stupid as I look. It still seems to be one of the things that all the medical profession hasn’t quite worked out, we might have brain damage, muscles that don’t work and no balance to talk of, but what brain we do have, is still ours.

 

Please read my blog from 2 years ago today – 26/12/2013 – A strange Christmas

I have no idea what was wrong with my yesterday, long before I wrote my post, in fact within an hour of getting up, I was in tears. For no reason at all the tears just kept taking over, I had no control over…..

Disabled by people

It doesn’t matter how much they love us, or we love them, it is inevitable that at some point in any relationships, one or both will do something to hurt the feelings or the other. Add in chronic illness and it’s not only inevitable, it is unavoidable. There could be loads of reasons as to why this happens, but what matters the most is that it’s dealt with and we all move on. The reason that I have heard the most puts the onus on us, the ones who are ill, as we are supposed to become more emotionally sensitive, to the actions of other. Although there may be some truth in this, and undoubtedly, when you are in increased pain, things are said that probably shouldn’t be, just ask anyone who has had a baby about that one, but I think it actually goes a lot deeper, and mainly in the opposite direction. There is one undoubted fact, people in general, don’t know how to act around or interact with, those who are chronically ill or those who are disabled. For some reason, that I can’t put my finger on, other than a total lack of understanding or applied thought, they feel they have to act differently and totally miss the most important fact, we are still people, the people we have always been.

Adam and I have only been together for 2 years longer than I have been diagnosed with PRMS. In the 14 years since then, I am sure that almost daily we have annoyed each other almost equally, but clearly, I this post isn’t about who is hogging the remote control today. When you suddenly become ill in the eyes of others, which is what happens the second that you get a diagnosis, it subtly changes ever single conversation or act, from that second on. Most of it is well-intentioned and often quite sweet and helpful, but occasionally, it makes you want to scream. Normally, when you actually do, they are totally lost and look at you as though you have fallen off the Christmas tree, as they have no idea what the problem is, or there even was one. Which is exactly what happened the other evening just after, we had been to the kitchen to sort out my night time meds. For over a year now, Adam has now been responsible for all my meds. I have made so many mistakes, that I asked for his help, so I didn’t spend another night crying and unable to work out why I was in so much pain, simply because I had muddled up my meds yet again. Eight o’clock arrived and he jumped up picking up his boots that would have otherwise blocked me from getting to the door in my wheelchair. He danced around the living room shifting other things, that didn’t need touching, then he did this odd little body swerving act at speed so that he, could get to the kitchen first. Funnily enough, I can switch lights on and get into the room without out him preparing the whole journey for me. As I was entering the kitchen, he once more jumped out of what he thought was my way, then he did this odd act with the bottle of coke he was holding, as he thought that somehow he was once again in my way. The whole thing meant that I landed up running into the kitchen cabinet, which if he had just acted towards my presence as he would have done when I was on my feet, wouldn’t have happened. He has been doing this odd behaviour ever since I have been back in my wheelchair, and it annoys the hell out of me.

No matter how well intended these odd actions are, they came across to me, as highly patronising, rather than helpful. In fact, his desperation to help had once again made my life harder. His distracting behaviour meant I didn’t pay full attention to the line I was taking to enter the kitchen. Catching my wheels on the cabinet, meant I was caught and getting free, took ten times as much effort, than my normal gliding entrance would have. I know perfectly well that they aren’t intended that way, but that evening was the final straw and I simply had to tell him how I felt and ask him to stop it. I waited for a few minutes after we had returned to the living room, then made sure that I was relaxed and that my voice wasn’t going to come across in any other way than what it was, a genuine plea from the heart. Just as I expected, he wasn’t really aware of what he was doing, and especially not, of how it came across. He thought that he was just being helpful, trying to make my life easier as is his way.

Throughout nearly all the time I have been ill, it doesn’t matter whether you know the person, or if they are a total stranger, they all forget the most obvious thing, we are still capable people most of the time. Yes, if we are clearly in increased pain, or struggling, then help is more than appreciated. But when we are our “normal” selfs, the people who manage all day long, without someone dancing around in front of us preparing the ground we are about to travel on, all that is needed, is to treat us as humans. Our health may have stolen nearly everything from us, but that is the one thing it hasn’t touched, yet.

For some reason, once we are visibly ill, the world suddenly treats us totally differently. For many of us, it is the day that pick up a walking stick, that we first see the change in others. Suddenly they do nice things, things they wouldn’t have done for us before, like offering us a seat on the bus. Don’t get me wrong, that seat is truly appreciated, but they also start doing odd things, things that don’t quite make sense, other than we are no longer, quite human. Doors and chairs, I get, but light switches, moving furniture that’s not even in our way, doing things we are more than capable of doing without assistance, they may be thoughtful and nice, but day after day, week after week, we are slowly disabled by others. I felt exactly the same thing happening at work as I have at times with Adam, I have felt it when I was out on my own or even when others, people overcompensate. Our bodies are already making us slowly disabled, but it is people, who disable us even further and faster. All it takes is a quick question, “Do you need help with that?”. Some do ask, and I almost bet, they are the ones who have lived with a disabled person, or watched a grandparent, slowly go down hill. They are the people who understand that our independence isn’t just required, it’s vital.

When I spoke to Adam, I asked him quite simply, “Would you have done that if I were on my feet?”, his answer was, “No, I guess I wouldn’t.” Since when, I have been human again. For all of us, the time will come when every second of care will not just be nice, but needed, but our independence is vital, even if that independence is simply turning on a light by ourselves. I don’t think that wanting to be treated as a person, means that we are emotionally sensitive. If someone does explode or throw you a scowl when you rush across a room to open a door for them, put yourself in on their wheels, and think what your actions might have looked like to them. Oh and next time, just ask.

 

Please read my blog from 2 years ago today – 13/12/2013 – Image destroyer

Since Tuesday I have been meaning to call the doctors for a repeat prescription, I have been blaming my memory again for letting me down but when I called this morning and as soon as I heard the…..

 

 

Independent or Supported

For many of you out there this is the first day of normality after the holiday, here in Scotland there is still one more, today, so as you might guess I have my snoring companion for one more day. I had a phone call from my friend Jake last night, at first I thought it was just to say happy New Year, but those words were rapidly followed by “So which day do the decorations have to be down by?”. He is only 7 years younger than me but at times the questions he asks makes him seem much younger. I had actually been sitting watching Eastenders when the phone rang, by the time I crossed the room to pick it up, it had shifted to answerphone, I still picked it up but I couldn’t see the number on the display screen because it had switched over. I was sure that I actually saw Teressa’s name on the screen before it vanished, so I found her number and called, she seemed a little surprised to here from me, especially as it wasn’t her that called. We spoke for a few minutes but as we had talked last week for a long chat, we wished each other a happy New Year and I returned to trying to work out who called. Our phone like almost all these days has a display, but I couldn’t get it to show what the last number was that called, I pressed all the different buttons but none gave me a number that I could be sure had been the last to phone here. Adam was in the kitchen washing some glasses, so I took it to him feeling silly as I was beaten by phone, another to add to my list of, I just can’t do. It took him less than a second to find out it was Jake and I left the kitchen as sheepish as I went in.

Tasks like that are so simple but when your brain won’t answer your questions, your eyesight fuzzes up what is there to be seen, and your fingers press a collection of buttons and not just one, what chance do you have? I hate to think what might happen if you dumped me in a lift or in front of a bank machine, I think others would quickly have enough of me and just shove me to the side. It really are those sort of everyday simple tasks that I learned long ago that it was best not to even try, the results are all clearer in my mind than the processes are. Joking a side though, it is those simple things that quickly pile in on us and make it clear you just wouldn’t be able to manage the world out there by yourself. Living isn’t just about being pain free, it is about being able to be independent in the wider world, I have often wondered where I would be now if it wasn’t for Adam, he long ago took over that side of my life, in the truest meaning of the world I haven’t been independent for years. If I was on my own, I would need so many helpers just to get through a normal week that it would be a nightmare with carers coming and with the best will in the world not doing what I really want doing in the way I want it done. It is all very well government going on about independent living, it just isn’t possible for everyone and it probably extremely dangerous for many.

I expect that most people see independence meaning the big things, but in reality independence is all the little things. The things that most people don’t even think about as they do them daily, how do you open a door when you can’t remember which way a key turns or you can’t even get the key in the lock. When you find yourself not knowing where a dirty plate should go as you know it isn’t the sink, but can’t remember buying the dishwasher. Independence means not having someone follow your every move, ready to jump up if you fall. It means not being left feeling as though you have become the stupidest person to ever live, because you can’t do today, what yesterday would have been simple and no matter how much help you have, you will never be independent again. I can’t exist for any length of time now without someone there to help me, be it with a phone, a door or a thought process. I’m luck as the person is someone I know and I love, and also knows me and loves me, I have the support I need and also accept that I need it. I really don’t see how any government can replace what I have, maybe they should stop calling it independent living and call it supported living instead, I don’t think it would sound so much like a threat and more like a gift.

Independent Living

Yesterday I was invited to help out Alex Flynn doing some PR work, something I have never done before and have no knowledge of doing, especially as the work would have meant that I would have been dealing with the American media, I’m not a great media person if you know what I mean. I am the type of person, that if Usain Bolt sat down beside me I wouldn’t recognise him, which has been totally proved as it happened, not Usain Bolt but with some other rather famous people in Glasgow. I know nothing about celebs or media companies, I haven’t read a magazine since 2003, and that was because I was in hospital for 2 weeks, a British news paper hasn’t been in my hands since 1997 and I haven’t got a clue about what is good or bad PR these days. I just simply not the person to do this job at all, understandably I turned the offer down as I don’t want to damage the wonderful work Alex is doing. For those who haven’t heard of him, Alex has early onset Parkinson, he has been fund raising for Parkinson research for a long time, his latest challenge is to run across America, ’10 million meters’. The run is due to start in September and the PR person set up to do the work, have pulled out last minute, he is even willing it’s not huge money but it could be an added earning for some one who already does this type of work freelance. If you know anyone or even would be interested in helping yourself, let me have your details and I would be happy to pass them on.

While I was thinking about all of the above I also had to take into account the money aspect. One of the really difficult things about working in the UK once you are signed off as permanently disabled is you can’t work at all, well you can up to 16hrs a week voluntary work but any payment at all can mean they take your benefits away and you have to start from the beginning again. It means that it really isn’t worth your while taking any temp work not only would you loose your benefits for that period, but it would mean that you would also loose a further £15 a week for the next 3 months, then loads and loads of forms to fill in just making it all more hassle than it could possibly be worth. On one hand they don’t want you to be on benefits but on the other they put in so many hurdles and barriers it becomes impossible to do anything other than stay where you are collecting the monthly checks.

Feeling useful and achieving things is so important to anyone who has a chronic illness and or is housebound. I have many times said the biggest enemy I have after health is that feeling of self worth. The desire and goals, achievement and success don’t go away when you are no longer able to get past your front door and to be able to be part of the working world even for a short time is worth far more than what the NHS can do with just tablets. I really think there should be more flexibility in the system, allowing you to work if the opportunity arises.

Years ago I was unemployed as I tried to establish a career as a DJ, the government allowed me to work, but I had to declare all I earned and supply receipts for what I was spending on equipment, taxis and so on. They assessed what I had earned and the amount I got in benefits changed weekly depending on what came in. They system once ill is totally different, you are either ill or not, there is no support to allow you to try and set up a self employed position, it is just nuts. I am sure there are many opportunities especially these days, which would allow a degree of self respect to be obtained without the complete removal of benefits until it is clear that earnings would be able to replace totally what was previously claimed in benefits.

I really do believe that if there was a system available more people would take hold of that possibility and more would then be able to become independent from the state or at least to reduced the level of benefits, while still earning a little above that rate, allowing them more self respect and a better standard of living. This is something the government wants and something others out there like me would grasp with both hands and attempt to run with it even when their bodies can’t run any more.