A glint of silver

Although Adam is my carer, I do try to keep what he has to do to the minimum. I think the biggest job that I have had to hand over to him, is by far, the housework. For me, the person who did it for all the years before, well it was just a switching of roles. For Adam, I think he found the entire idea daunting, but he tried hard to reassure me, that everything would be taken care of. For a not just houseproud, but fussy person, this was rather hard to believe and even harder to sit and watch.

I had worked a full-time job, then came home to be a housewife, for many years. Both jobs were demanding and as a perfectionist, I could find no excuse for not being able to do both. As my health started to fade, I still pushed myself to be perfect. I can see now, that it was probably a stupid thing to have done, but I was at the time determined that no matter how I felt, everything had to go on, without any excuses. I was a tough act to follow, and worse still, I was still here. For Adam, it must have been a total nightmare in the first couple of years, as although I did my best to bite my tongue, I couldn’t help interfering. In all honesty, I was trying to help. I had many years of learning the quickest and most effective way or creating perfection, without the work that it appeared to take. Adam, though, was and is, determined to do everything his way. It still takes him half a day, to clean the bathroom. I used to do it in an hour, with a fifteen-minute coffee break included. He hasn’t learned from me, but after several years, I have learned to just leave him alone to just do it.

Years ago, I would get up at 4 am, not just to get ready for work, which took longer for every year as I got iller, but so I had two hours, in which I could do all the daily cleaning, other than the hovering, that I did when I got home. It was my way, of being sure we could be together each night. I had the freedom of starting work at 7 am and finishing at three, then home to hoover and take a nap. No matter what, that, will never be Adams way. He will never be the houseproud person I was, but he does what he believes needs doing, and that’s another reason, why I love my daughter coming to visit, as a cleaning frenzy ensues. To be honest, these days, I would rather the house wasn’t perfect, if, it means we can spend time together. It’s another of those values that you find changes when life goes off the rails.

Housework wasn’t the only thing I slowly became too much for me, cooking became a chore. I once had loved it so much, that I could see no issue in spending all my free time, over two days, making something that would be eaten in ten minutes. At first, it was my energy levels that got in my way of our gastronomic feasts. Food became simpler and more basic, but we were fed. Then my health stopped me eating. At first it was just the choking, then it would get stuck and finally, I felt sick all the time. Being old fashioned, I still cooked for Adam, but he wasn’t having it. If I wasn’t eating, he wasn’t going to let me cook for him, he could do that for himself. Even when I did eventually manage to eat again, it wasn’t much and cooking had become a danger zone for me. I couldn’t cook and I definitely couldn’t wash the dishes, if we wanted them in one piece, but I could reduce that chore by more than half. The dishwasher entered our lives for the very first time.

I know Adam hates the househusband side of his new role. He quietly ignores the dust on high shelves, or in rooms where a visitor wouldn’t be. Spring-cleaning isn’t a joy our home has even heard of, for over 9 years. I was the last person to have the total pleasure of washed the walls and ceilings, trust me, it was a twice a year job that yielded great satisfaction. Yet, he won’t even entertain the thought. To be honest, when I think back to the work it took to keep a home in the 70’s when I married for the first time, modern housework, including deep cleaning, is a doddle. We, at least, have a washing machine, tumble dryer, and a vacuum cleaner, I had none of them. Not until we scraped together the money to buy a twin-tube machine, to help with Teressa’s nappies, but, not until after she was actually born. Until then, I did all, and I do mean all the washing by hand. This, though, is 2016 and we have gadgets galore, but still Adams biggest dream is to employ someone, to do it all for him.

When I was first diagnosed and Adam said that he was going to take over everything as it was needed, my vision of our life now, was very different from its reality. It wasn’t that I actually thought about it at all, it seemed to me to be a natural transition. He would take over my role in the identical way, that I did everything. It didn’t even occur to me that there was another way of doing things, as I just did what had to be done. I wasn’t being fussy, difficult or even dictatorial, yes, I do now realise, that it could look that way, but that had nothing to do with it. I simply couldn’t see why anyone would want to do anything differently, or that there really was a different way to do it. Like everything else in life, if you want a clean house and good meals, well someone has to do it, and I was no longer able to. He told me he was happy to take over. He seemed oddly content to watch things drift into what I could only see as a mess, it didn’t make sense and it took me a long time to get used to it.

When it comes to the daily details of life, we are clearly chalk and cheese, in our attitude. I never thought that I would be content to sit in a room where I could see a speck of dust, yet I am. I never thought that I would ever permit such things as fish fingers of tins of anything, cross my threshold, but I do. Mind you, I still draw the line at eating them. These days, I am content with the way things were, yes, I wish we had the money to employ someone, so he didn’t have to do even what he does, but right now, we can’t.

Accepting and adjusting to our health, isn’t just about what our health physically and mentally, means to us. For me, I honestly believe it could cause me all the pain in the world and rip my brain even further apart, and that, would still be easier to adjust to, than all the things in my life I can’t do. The medical conditions we have to live with are just the start. All this, is probably the biggest missing part, from every description of any condition, I have ever heard or read. The biggest thing that it takes from us, are the everyday details of our life. The things we do without thought, the things that fill our time, they are our biggest loss. When I occasionally get picky about things, when I try to advise or attempt to correct, I’m hurting. Watching Adam do what I once did with ease, hurts. Every single time a duster appears or I can hear the hoover, it hurts. It should be me doing that, not sitting here like a useless piece of discarded rubbish. Seeing dust, hurts, not because it’s there, but because I can’t remove it and it’s friends. Every dirty glass or unwashed pot that can’t go in the dishwasher and is waiting to be washed, hurts. You name it, if it once wasn’t that way when I was healthy, it hurts like hell.

In the last few months, since I have felt myself slipping, that pain oddly has become easier. I don’t fully understand it, but I no longer hurt so much. It is as though I have reached a point where I no longer fret, my mind has closed the external out, as it has too much to deal with inside. As they say, every cloud has a silver lining, I think, I found this one.


Please read my blog from 2 years ago today – 19/02/2014 – Who copes

Sometimes I sit and wonder just what is the worst part of what is happening to me, or that has already happened, I try really hard to find an answer, but I never find one. I can find and name a list umpteen times…..






Stepping into a new future

Today is going to be a mess and for once, it’s got nothing to do with me. Two weeks ago, as we do ever Wednesday evening we were sorting out our midweek treat of one of those fancy tear and share breads. Adam lit the oven, but within seconds, it turned itself off and refused point-blank to stay alight, our 15-year-old cooker was dead. We had hoped that we would be able to buy one and have it fitted last week, as Adam was off work, so it was just easier that way, but we didn’t know the system, so we didn’t order it until Tuesday, too late for our plans. As you will have guessed, today is the day that our new one arrives and like everything else, buying it was the easy bit. Because it is gas, it can’t be fitted by just anyone, so the system is as follows, the cooker will arrive anytime from now through to 2 pm, followed shortly after, by the gas fitter. He will disconnect the old one and fit the new one, once done, the delivery van will return, to remove the old one. It all sounds so easy, but life has told me a million times, what should be easy, often isn’t. No matter how much I want to believe it will happen the way they say it will, I just don’t believe it. Add onto that, the fact I normally sleep for part of the afternoon, and well, you can see why this is a day, I just want to end, even though it has just begun.

I had actually totally forgot that it was coming today, that in itself isn’t that surprising, nor is I suppose that I had actually planned my week totally differently. I had decided on Sunday just to enjoy my day and take it all slowly. Then yesterday, I was going to get ahead with scheduling my quotes and anything else I could out of Tuesdays routine, plus have my shower, as I was planning to make my Psyllium pancakes today. Then yesterday lunchtime when Adam phoned to say he wasn’t coming home for lunch, he reminded me that the cooker would be here today. At first, I was just plain angry with myself for once again forgetting something major was happening, then I remembered the pancakes and my heart totally sank. From start to finish, they are a 5-hour job, granted nearly 3 hours of that, is just waiting for the yeast to do it job, but it still time. In the past, I would have tied myself up in knots, panicking about how I was going to fit it all in around my routine, without it all falling apart. Once off the phone and in the kitchen, I sat and checked myself, just sitting, breathing slowly and taking the time to sort it all out in my head. Once more, I was calm and relaxed about it all, I had a new plan and I was at peace with it. Even a month ago, that wouldn’t have happened. This new me, the laid back, what will happen will happen me, is odd, but somehow nice.

Of all the things that I know has made the biggest change in how I am feeling about life, was the realisation that I couldn’t control things any longer and I had to find a new way of handling everything. Yesterday proved to me that it works, until then it was mainly theory, I hadn’t had anything happen that was major enough to be sure it would work. But there I was, everything up in the air, and I was calm about it. There were no tension tears, not banging things around in the false belief that speed would make it all happen quicker, I was doing everything the right way. I am not saying that it all passed without any issue. I did at one point find my breathing all over the place and I wasn’t able to sort it out. So there I was sat on my perching stool, cooking pancakes whilst using my nebulizer. Probably not the image that most would expect in a kitchen, but it worked for me. Taking the time to just stop, to think about it and put it all into a logical fashion, and accepting that my day was just going to unfold as it did, rather than how I thought it should, made a world of a difference. I hadn’t been sure it would work as I am fighting against many ingrained habits and also brain damage, I have tried using different theories to control it in the past, but always failed. Usually, my brain can’t cope with things not being just so, not exactly the way it expected. Until now, I have never been able to calm myself, all I could do was go with it, accept that I was going to be distressed and wound up, with no escape until it decided to let me go. It was both scary and exhausting, but there was nothing that had worked before, not even systems almost identical to what I used yesterday. I can only think that it worked because of my acceptance that I can’t control anything and that life, now has to be in the hands of others.

The whole afternoon passed not as I expected, yes busy, but I still had a nap and my shower and the pancakes were done as well. As for what I normally did online, well it just stopped, and I didn’t feel stressed by it. One of the things that I have been thinking about for a long time now, is setting up something that will aid my memory, but is still mainly run by Adam. I have looked at them in the past and done nothing about it, but I know there are out there several free multi-platform calendar/planning apps. What I want, is to set up everything from ordering my prescriptions, to the next day I have to have a shower, all my hospital appointment, you name it, anything I need to be told to do, or be ready for. With it being multi-platform, it will work on my PC, Adams phone and his laptop. That way both of us can see it, add to it, check that things have been done, or not, and it should keep us both in line. I am also going to try and find one, that sends alarms as well. When I had one just on my own PC, it was too easy to ignore, lie to and basically pay no attention to at all, it was a perfect exercise in futility. If we had had one, I wouldn’t have forgotten the cooker was coming today, and Adam would have known about my plans to make my pancakes. More than that, it wouldn’t have been in that day, when I was on the phone arranging the cooker, as I would have put it there as the day, they would run out. Adam is already my memory, the person who sorts out my meds, opens all my mail and keeps me right daily. What he has to do for me, is always rising and I think things are already getting to the point, where he too, is starting to forget about some of it. Running our own life is hard enough, running someone else’s as well, well let’s be honest, it’s a lot to ask.

To my surprise, I was in the middle of the second paragraph when the doorbell rang. It was the gas engineer to uncouple the cooker, I had been told that the cooker would be here first, but apparently not. He was still testing the gas for the whole house, when it rang again, it was the cooker. All of it was happening at once, and not the way I had expected. Once they had delivered it and left with the old one, I disappeared back through here, in desperate need of normality, to be away from all the mess, people and change. Everything was happening too fast on one hand, and perfectly on the other. We’re now an hour on and peace has settled back on my home, and I have a working and perfectly beautiful, new cooker. I have made it through turmoil without landing up as a jibbering wreck. Just all the toing and froing has been enough to leave me tired, but for once, I am pleased with myself at just how well I handled it all without Adam by my side. I’m not totally calm, I’m not totally settled and peace with the world, but I am content with that, that is a minor and irritating thing, but I can handle this and I will settle back into my day. Life is good, that’s all I have to remember, life is good and I am safe, not in control, but safe and that’s what really matters and has to be my goal from now on.

Please read my blog from 2 years ago today – 27/10/2013 – Family breakdown

When the day start with the shock of touching your feet to the floor and burning pains sears through the soles and fires up through your shins, well you have to wonder what the rest of the day will bring. I know all to well that burning in the soles of your feet is a clear sign that you have nerve damage, I have over…..