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…..

Letting go

I lost just over an hour of my morning today and all because of two things, the TV and Adam. It is normal that Adam switches the TV on while I come up here and get settled for the day, but this morning although it all seemed to come on, nothing appeared on the screen other than blank blue. We talked about the possibilities and Adam carried out a couple of checks, but nothing happened, we even rebooted the entire system, but still the screen remained blank. Throughout his fiddling with it and even when he was in the shower, I had to resist the urge that I always have to just go over and do it all myself. Years ago I wouldn’t have even asked Adam to try, I was the one, simply because anything either electrical or computerised are the two areas I have expertise in, but recently I have been teaching myself to hold off, to trust him to do what is needed. Already it is a fact, that I am not up to climbing behind TV’s, lying on the floor checking wiring and so on and as time goes on he has to learn to do these things and take over what is required in simply having a home, on top of this I have to put my trust in him to be able to do things. By the time he left, the TV was still dead and I had opened up on my PC the morning News so at least I could hear it, if not work and watch it at the same time.

It is hard to resist not interfering, I know it really annoys him when I do, so I remained sat here and left him to phone Sky from work, as I was also resigned to the fact we would probably be buying a new Digi box. So I simply got on with what I had to do and waited for Adam to get on with what he had to do as well. When the phone rang I thought it was going to be Adam calling to say there was either an engineer on the way, or that we would have to wait for a new box, but he had the web details for me to buy it, it was neither. Adam was just calling to check if the TV was still not working, so with him still there on the line I walked over to the set and switched it on, in less than 10 seconds I saw what was wrong with it and 10 seconds later had it working. All that was wrong was he had accidentally clicked the source button and the TV and Digi box were no longer connected, a simple mistake, one that has happened a few times in the past, but one he had clearly forgotten about, it leaves me with a quandary, in future do I interfere, which he hates, or do I still let him take control. It is incredibly hard to hand over control of your home, even if it is just bit by bit, despite the fact I have handed over all the housework, I still sit here looking around and become embarrassed that it isn’t all spotless from ceiling to floor both included, but I am equally aware and grateful for the work that he does. I am sure that it is part of the madness caused by MS that the urge to climb a ladder and start Spring cleaning the house throughout, especially as the actual outcome wouldn’t be a clean home, but me unconscious on the floor, possibly with several broken bones, but I still want to do it.

I know it is something that all of us face at some point, most through old age, but handing over my home has been as hard as it is now to accept the possibility of handing over my body to someone else’s control. I suppose we are all creatures who once old enough to gain control of our own worlds, never want to slacken that grip on it, not even by a fraction. It is incredibly easy when you are young and still growing your circle of influence, to not be able to even imagine how it might feel to lose it again, even when you are middle aged, you never consider a future where you have no control over what is yours, we just don’t think that way. Inside we are eternally young and what is happening to the outside of us, we simply ignore, what we see in the mirror isn’t us, but the version of us we believe should be there. None of that changes when you become ill, it is no different from growing old, it happens bit by bit and it happens without our permission. When people say they get frustrated by their illness, I think it is this that frustrates us not the illness at all. We are frustrated because we have lost control of all that we worked so hard to build, be that our home, our knowledge, or even our bodies and worse still, the tiny areas that we might still be able to have some control over, we have to hand over in preparation for the time when we can’t be of any use at all.

There are two level to purpose of our existence, one I write about constantly, to be able to love and to be loved, but there is a second one which is just as important and that is to be of value, to be of use and to be able to give input where it is required. I am lucky in that I am secure within the first level, without love there is little point to life, but it isn’t everything, that second level is just as important as it helps to define us as people. Far too many people once they retire, suddenly go into a slump, as they have lost the thing that gave them purpose to the hours that make up the day, they become lost as they are no longer, this or that, they are x-this or x-that. It often looks as though women manage better with retirement than men do, possibly because they have a secondary purpose, that of homemaker and it can take over, giving them another purpose another reason to their day. Chronic illness takes away all of that and an awful lot more, I also believe that the slow drip, drip removal of everything you have known, is harder to deal with than it all just coming to an end, my grieving over what my illness is doing can’t end, until I have lost the final battle of dignity.

For now, I guess that I will still have to keep handing over, keep trusting and keep quietly trying to teach as each new household hurdle arrives until I have passed them all over, or we are bankrupted by repair man bills.


Please read my blog from 2 years ago today – Achieving structure

It has been a strange week on one level it has been incredibly normal and quiet on the other it has been really hard and stressed, which is not normally for me a good place to be but I think apart from being a little tired I have emerged rather unscathed by it all. Heading through life with no direction has become a feature over the last few years, I never was a great one for detailed plans but I always had a general…..