Independence reborn

We have a working shower!! I know that may not sound like much to you, but after not having a shower for the past 10 days, it means the world to me, at this second. I know that I only shower twice a week normally, but I really missed sitting there naked and letting the water run over me. One of my carers are due here this afternoon and she can’t arrive soon enough for me. It turned out that it was a fault in the shower, not poor workmanship on behalf of Adams pal who fitted it for us. He was really not happy about going to him and asked for what we had been warned would be £86 if it were his fault. In some ways, it does make me think twice about using any friend, even when qualified, to do work for us, if it goes wrong, I think Adam would just bite the bullet, rather than ask for the money back.

I have to say that the one thing I am looking forward to more than anything, is washing my hair. I have been using a dry shampoo all last week, but although my hair doesn’t look too bad, I just hate the way that it feels. I don’t even know how to describe it, despite repeatedly brushing it, it still feels sort of thick and full of product. Mind you, I don’t normally put anything in my hair, other than dye, shampoo, and conditioner, so I’m not used to the feel of anything else, other than clean hair. Which reminds me, I really do have to dye my hair, the number of grays, are starting to get beyond a joke. Vanity isn’t one of the things that my health hasn’t removed. There are still odd things like hair, skin, and teeth, that bother me as much as they ever did. Old age really is a pain all of its own.

This is the last time that I will see the carers who have been taking care of me for the past six weeks. My assessment period officially ends today, and Karen, the lady who organises it all will be here to see Adam and me on Wednesday morning, to discuss where we go from here. I’m really sad to see the girl who is here today go, as she is a total sweetie, but she is one of the qualified assessors and it is more an everyday carer that I will have in the future. Which of course, means that I go right back to the beginning, and I will be teaching a new pair just what I need and exactly how to do it. I really don’t like the idea as I have just become comfortable with the pair that I have. For me, it’s hard work making those connections, especially as before they arrived, I had very much been on my own. They have changed my life dramatically over a very short period of time, which I am glad of, but starting again is daunting.

I know that I have actually adapted far better than I thought I would. I honestly thought that I was going to find it far harder, as I was so used to my splendid isolation, maybe too used to it. So saying I’m going to miss one of them, is a total flip in myself. I no longer want to throw them out of the house and actually look forward to seeing them, and not just because I get a shower. It is, though, one of the beauties of being human, we are far more adaptable than we think we are. These last few weeks, not just with the carers, but including the district nurses, have oddly made me feel as though I am actually back in control of my life. I thought that I was losing my independence, but I haven’t, oddly they have given it back to me.

I know that is the last thing I and probably you expected to hear. How can people coming into your home, to wash you, or give you enema’s, possibly do anything other than take your independence away from you? Well, it can. I used to spend hours trying to do these things alone, trying to work out ways to wash, ways to do it safely and puzzling over what to do for my bowels. My life was tied up in those two small things. They were relentless questions, a dilemma that dominated everything else. Now, they are small interruptions and once taken care of, I have my freedom to do the thing I want, on my own, without having to even think about them. They are now their problems. I let them work on them, think about them and work out how to get past the problems without a second thought from me. I can go about my life, knowing I’m clean, protected and that I have medical assistance, who will come to my home if I need them. That to me is a new freedom, a new independence, that I haven’t had for years.

There is one thing that I have learned from this whole experience, you have to plan it to suit you. I have two different groups of people coming here twice a week. Originally, the thinking was to have the Nurses here three times a week, but that was too often for me, not just medically, but mentally. After the fortnight of trying to work the two together, I rapidly discovered that I don’t have the energy to manage both in one day. Even with the Nurse here in the morning and carer in the afternoon, it was too much for me. Equally, having someone here five out of seven days, was too much. I felt as though my life was dominated by it and I had no space in it for me, or to just spend with Adam. I hit on the idea of the Nurse visiting on Monday and Thursday, as I already had the carers visiting on Wednesday and Saturday. This pattern allows for life to go on and for me to recover before the next round. It is now three full weeks that we have been working this way and it works. I still have my life, the one I’ve been living for the past 7 years, I have lost the problems that were driving me mad and slowly, I have begun to feel good about it all. If their presence in your life, isn’t working for you, it is never going to make you feel you’re still independent, just trapped.

Clearly, I am finding this whole business completely the opposite of what I expected and the more it is becoming part of my life, the happier I am with the whole thing. If it were really needed, I would now be happy to accept any other help. How I would fit it in, right now I’m not sure, but I know without a single thought, I wouldn’t be frightened by it, as I was just two months ago. If you don’t believe me, just go back six weeks and read your way forward, the change you will see is dramatic. So don’t be scared if you too need assistance to live, OK I know you will, we all are, but try to remember how I have found it and give it a go. It isn’t the end of the world, it’s just a bit of change to it and when it works well, it gives you a freedom you won’t expect.


Please read my blog from 2 years ago today – 31/072014 – Staying sain

Last night we were just watching TV and talking as we always do and at this second I don’t remember how we got onto the subject of my blog, but we did. Adam said something so true that for once he looked as though he was about to burst into tears. I’ve never understood why painful things when said, make people do that, but I owned up to the other day, words appear and the truth of them…..

My only advice

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

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

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

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

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


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

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

Independence: The important part

When I read back yesterday post, I was very aware there was something missing from it. To me, it was something so major, that I knew I had to write a follow on post, one that would not just correct the mistake I had made, but would explain to both you and me, what is really behind my pain. As I said in the opening paragraphs, that I’m hurting, that I can’t accept that I am losing my independence nor the speed that it is happening. Then I proceeded to write a more clinical post if you like, one that explained the physical events that add up to my loss of independence. There was the problem, I wrote a clinical post, how I feel is not clinical in any way. Clinical is what the doctors, the government and the social services assess. To me the person who is living with it all, it isn’t clinical, it’s personal, it’s emotional and it hurts like hell. So this is the flip side of yesterday post. Today, I am going to take each of the six sections, and look at them through my eyes, the person who is living with each one and how they effects me, physically and emotionally.

The first is eating. Eating is to some people, ie, Adam, something that “simply supplies the nutrition that we need. It doesn’t matter how it looks, just shovel it in” WRONG! Eating is probably the most important thing in my day. It gives a break from all other activities, admittedly it isn’t as exciting any longer, but that is down to my lack of ability to cook. I have fallen into just keeping it simple. I have found a few meals that I am happy enough to eat again and again. But I do have a complete feeling of dread about the future. Food should be interesting, it should look great, smell wonderful, taste fabulous and along with the taste, should be a range of textures, to equally excite your mouth. Some of these things I already miss. As things are, I frequently choke on things, so textures have already slipped as softer foods are easier. Meat has almost gone, not that I miss that, but I do miss fish especially shellfish. Preparation and expense have reduced them to rare treats.

If my dexterity fails me and I reach the point when spoons and forks defeat me, then let me eat with my fingers, rather than someone feeding me. I can’t bare the thought of good food becoming a mushed up mess. If you like, a return to toddler foods, as I have seen so many landing up on, so that they aren’t in danger of choking. Food matters in so many ways and as far as I can see, every single one of them is ignored, it becomes all about nutrition. I hate the idea of soft nameless slop being spooned into my mouth. I would rather have another tube down my nose than be fed slop, though, I doubt the doctors would agree to that, just out of preferance. Ask a doctor and food is nutrition, ask a chef and food is art, that the side I fall on. When food can’t be an art, I don’t want to eat it. Right now it may not be an art, but that is down to practicalities of life, I could still eat a meal from any top restaurant you can name. I could, it’s just thanks to life, that I don’t.

The second is bathing. For some bathing is a wonderfully relaxing experience, I’ve never been one of them. So to me, this doesn’t rate highly on my list of desire or luxury. I am happy to be in and out of the shower in five minutes, so my emotional problems with showering are totally physical. I can’t stand the idea of being seen nude. I wouldn’t have batted an eye about it years ago, but now, no. In 9 years of being housebound, every one of those toned muscles that I once had, has turned to flab. I don’t even want to look at my body, anyone else seeing it, is something I want even less. I wouldn’t just be embarrassed, I would be mortified. I will fight with every once of my bodies energy before I would allow anyone, to be there with me, to wash me. To many, I know this will be surprising, but I don’t even want Adam to see me. He has done so now for about 11 or 12 years, I don’t remember, but I’d rather his memory stays as it is. I already find showering exhausting, even though Adam now does all the running around and shifting of towels, clothes and so on, I am knackered in just those 10 minutes, but I won’t give in. Emotionally, this one is huge and I can see, probably the one I will be facing the soonest.

Going to the toilet. It should go without saying, if I have the problems above with bathing, they are going to be doubled with this one. For some reason, even the idea of someone helping me onto and off the toilet is just wrong, terribly wrong. No matter how I have searched, I can not find any way that the word dignity and toilet can ever go side to side as our health fades. The fact that I could already on occasions benefit from a comode in the bedroom is totally ignored, by me. It isn’t just the idea of using it, it is the idea that Adam would have to empty it. The emotional hurdle in that one is higher than the ceilings in our victorian home. Worse still is the fact, that I am supposed to self-catheter all the time, I don’t, I just do it when I know I need to. I can’t bear the idea of Adam having to do that for me and although a lesser hurdel, a nurse coming in a couple of times a day to do it for me, I still hate the idea. To me, it would be better to have a permanent one, but yes, someone would have to enter the bag.

Toileting is a subject that has to be the hardest one to get around, the ultimate thing that says, you have no independence. The final mortification in life. The day that I lose all ability to deal with this area of life, is the day that I have to start thinking about many things very closely. In many ways, this to me is my game breaker.
Dressing and undressing. I have never had a great interest in clothes. I was the person who had enough clothes to keep my body covered in a style I liked, and no more. Everything was and is black, and everything instantly goes together. What I put on in the morning, is what I always wore to the end of that day. I never had different outfits for different occasions, I had clothes. Nothing was appropriate or inappropriate, it was just what I was wearing. To be honest, I care little about this at all. Even when I go to the hospital now, I wear my pyjamas, why change, black baggy trouser and black baggy top, their clothes. I guess you get my drift. As long as it’s black, I don’t really care. But the future, well then I care. I can’t hide my body from the person dressing me, that I care about that greatly. Dressing or undressing while covered by a sheet, is a million times harder and I don’t have the flexibility, if I had, I’d never need help.

Socialising. People make a big deal out of this one, which is something I don’t really get. As I said yesterday. I am happy with life as it is, to me, this has nothing to do with anything except when it comes to when I have to deal with anyone other than Adam. I have grown used to our life and outsiders disturb me, as long as he is between me and them. I cope. But I have spoken about this all before.

Dealing with paperwork. This one hurts. I know it’s an odd one to find pain in, but I do. Since I was a child, I have dealt with everything myself. I taught my own mother how to pay a bill when my father left, as she didn’t have the first idea. I wrote up my own divorce papers which my lawyer only changed slightly. I’ve dealt with pensions, mortgages, you name it, I have done it without aid. I can’t even read a letter from them these days without going into a panic. Dealing with the legalities of life, are now beyond me. This to me more than anything shows me I will never be independent ever again, physical abilities come and go, mental ones, only ever go.

Independence is so emotional, so awe-inspiring that when it comes to the time you are being forced by your own body to let go of it, well, no form from the government, no visit from a social worker can ever sum up what it really means to us. Even the words that I have written here, only touch the very outer edges of it. I don’t think I have the ability or knowledge to put down their full impact. If you still have your independence, even just a tiny shred of it, hold on to it tightly, never give in, just because it might be easier, as trust me, it’s not.


Please read my blog from 2 years ago today – 16/03/2014 – “It’s life Jim”

I know that there will always be good days and bad days and that I will never have any control over which happens when, but what I would like, is to just smooth out the extremes. Yesterday my pain was more or less out of control, I twice reached for and took a booster pill just to get myself set at a level that I was comfortable to go forward with the rest of the day. Yet just earlier in the week I was feeling good and able to get on with life without a second thought about taking more meds, tablets which I now have stashed in three places around the flat. One with the rest……






Testing Independence

It’s pancake making day, Adam in right now in the kitchen cooking them for me. Like almost everything these days, my life is split into two parts, the part I can manage, and the part that Adam has to do for me. As he is on holiday this week, at his request, I made up the dough almost as soon as I got up, I then left it to rise for two hours, while he carried on sleeping. Then I woke him with time to have his breakfast before they were ready to cook. My part done, he is now in control. I don’t think there is a single thing other than feeding myself, that Adam isn’t physically involved in. It feels as though his takeover, has happened so quickly. I don’t mean that in a bad way, far from it, as I don’t honestly know any longer how I would cope without him. What I meant to say, is it just feels as though I am losing my independence at a speed that I never thought possible. I know that it is only a few weeks ago that I touched on this subject, but I believe there is far more to be said.

We all know that the time will come when we just aren’t able to do things. Over the last years, it has been a slow nibbling effect, something here, another thing there, but there was still this core of events that meant in my head, if not, in reality, added up to independence. The reality is, I couldn’t actually get through an entire day, without him. By the end of a week, well I don’t like to even imagine the mess that I would be in. Independence is a fragile thing, far more fragile than I ever imagined until now. There are a few things that I have tagged as equally independent from a list that the social services use. Their list is much longer, but these six seem to be the highest rating ones.

The first is eating. Eating isn’t just a matter of putting food in my mouth and swallowing it, eating to me is bigger than that. Clearly, there is the preparation of that food. If it is a case of measuring out a bowl of cereal and putting a tiny amount of milk on it, then that is more than possible. If you are thinking of a properly prepared meal, including meat and two vegetables, well that I can’t manage it. Even something as simple as an omelet is now beyond me, as there is one huge danger there, the same danger pancakes hold, the cooker. Let me near either hot pans or a hot oven, I will without a shadow of a doubt, burn myself. Even the microwave has conspired to become something not safe to use. I can manage the putting something in it bit, and setting the right time, but I almost always spill whatever it is once it’s hot. Part of the problem is a kitchen that was built for an able-bodied person, being in a wheelchair, means everything is just wrong and difficult. Once a meal appears in front of me, I can eat it, as long as it’s not too far from plate to mouth, then I spill it. I now avoid meat, it’s difficult to swallow and as I hate pulped food or sloppy things like mince, it’s easier to just steer clear. I can still eat, though, I often choke and I frequently find that it takes ages to travel from my mouth to my stomach. Is eating still independent, well strangely, in my mind, it still is. The above proves it’s not and my lose in this area has all happened in the past year.

The second is bathing. Adam now does all the preparation side, the fetching of clean towels, the laying out of my clean clothes and making sure I have plenty gel, shampoo, and conditioner. I can get in and out of the shower, I have my grab bars and my fold down seat, which allows me to wash myself as well as I can. I am sure, though, that there is probably a tiny strip in the middle of my back, that hasn’t been properly scrubbed for months, but it has seen both soap and water. I am content that I do manage to wash myself well enough, the problem is drying myself. I quite simply can’t reach my feet and stay down there long enough to do more than briefly dab at them. I need Adam to dry them properly for me. I did try air drying, but it was causing problems, problems that only being dry, could fix. That, and the fact that I forget to shower unless Adam reminds me over and over, well I can’t say that I am any longer independent in bathing. I was though until just a couple of months ago.

Going to the toilet. So far so good, but there is one huge but, I’m not sure for how long. I am finding the twisting to wipe myself, becoming more and more difficult. I think out of all the things that fall into the position of independence, this is the most difficult. Followed by the horror of not being able to manage my catheters by myself. There are some things that are just too personal, too private, that the whole idea of anyone, especially Adam helping me, is too horrific. For now, I remain independent.

Dressing and undressing. If it weren’t for the fact that I wear nothing but pajamas and dressing gowns, I would need assistance with both. As things are at the moment, well I struggle with my socks and Adam helps me when he is here. In an odd way, I still see myself as independent, as it fits with my life as it is now. In reality, I haven’t been independent since I became unable to manage either buttons or zips and that was years ago.

Socialising. I have no independence here at all. Even when people come here, I need Adam around, I can’t cope and become frustrated rapidly. I can’t get out of the house alone, but my biggest problem is dealing with people. As I have said frequently, I find the phone incredibly difficult. Being by myself, and seeing no one other than Adam, is actually all I want, not only what I feel comfortable with. So no independence exists here at all, but with the help Adam gives me when needed, I don’t actually feel I am missing anything.

Dealing with paperwork. Totally impossible for me to do anything alone. Adam has taken it all onto his shoulders.

I don’t think that independence is as simple as what is above. It isn’t all about actions that we can or can’t do, how we feel, isn’t really taken into account. I don’t see it as simply black and white, there is so much more to it. Out of the six things that I and others count as important to have, to say that I am independent, I have only one I can truly say yes to. I don’t know what it is that has changed in the last couple of months, as clearly it has been slowly building, but I do feel as though I have suddenly lost my independence, and I don’t know why. I am sure that without a doubt, that having to use my wheelchair, plays a part in it. But it just feels as though everything is slipping away from me, and more and more is being put upon Adam. Every time that I suggest getting help from the social services, he refuses to even consider it. I know that I would find it incredibly hard to have someone here, even for short periods of time, but it might mean that he isn’t left having to do everything for me. In some ways, it is that feeling that so much is being put onto Adam, that is upsetting me. I can cope with the fact I’m not capable of doing what I once did, I have to, just as I have coped with all the rest of it, but Adam is my husband, not my nurse, or my maid. But there is still more, something that is missing from this stark piece about functionality, they way that an assessment would view our situation, and as this is now far longer than I expected, this is going to be one of my rare two parters. Return tomorrow for what is to me the important part.


Please read my blog from 2 years ago today – 15/03/2014 – I don’t know what you are saying

I am once more sitting on my blow up cushion, it is actually now the third day in a row when sitting is an issue. It has to be one of the most unfair things about an illness like mine, I can’t stand or walk around for long so I have to sit, but sitting is too painful to manage, not just because of my backside but also my legs. It seems that sitting adds pressure to my some nerve grouping and once triggered then goes mad making my legs so sore that I often dream of being without them. I know it comes from sitting as it is a clear pain line, it travels not just down…….






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…..