I know it will never happen in my life, but I honestly would give almost anything to have a “matter transporter” or a “food replicator” to actually be invented and in my home! I used to really hate shopping and I was delighted when on-line grocery shopping arrived, it was wonderful, the freedom of not having to actual go to the shop was an absolute joy and I have to say an amazing boost to those of us unable to get there. Note though I said I used to, in the last few months, I am suddenly finding the waiting for the shopping to arrive just as much of a drag as it used to be going to the actual shop. I guess it proves that we are never happy and get used far too quickly to having the easy life rather than putting in the effort ourselves, or it is the beginning of what I knew would happen, it is going into one of those slots, just too much for me to do. I am not there yet, not by a long shot, but I have slowly been trying to pass on to Adam the first step of building a shopping list so that nothing is not there and available as it always has been when you open one of our cupboards. I know that my style of housekeeping is a dying one, the home where never runs out of anything, but I am old fashioned and I have never known or had to experience the situation of having to go to the shop to get something, until recently. My memory when actually buying online is slipping, there has been a couple of time recently where I have run out of something through my fault or it not being delivered and I have had to rely on asking Adam to bring it home with him and he forgot over and over. I know that may not sound like that big of an issue, but when all you drink other than Gin & Tonic, is caffeine free diet coke, not having any in the house is an issue. Strangely I have found that once you have accepted having to give up in the big things in your life, like you job, your once perfect home and so on, the little things like the food and drink you have daily become hugely important. I had struggled for a few months doing what I used to, going round all the cupboards checking what was there and returning to put it through online, but that takes far more energy than you might think, just walking around the kitchen going to all the cupboards, the fridge and freezer, bending, stretching and writing all build up to a huge drain, so I thought I had the answer, to ask Adam to make that list for me, what could be more simple! No insult intended but training my last dog that even if the garden gate was left open, her paws weren’t allowed outside the garden perimeter, was easier than asking Adam for a full and comprehensive list of what we need to buy each fortnight.

It took until this week for me to admit that our brains work in a totally different way, it isn’t a case of him not trying, it is just what he sees when he looks in a cupboard is totally different than what I see, I see the whole cupboard, right into every corner and what is there or not, he sees just what he is looking for. I could go now and put my hand right on to a bag of Soya beans or a can of Baby clams, I bet you he doesn’t even know that we have either in the house. I know it will be a trial but I now think that what we need to do is go into the kitchen together, empty every cupboard, clean it and put back what is still in date, throw out anything we will never use or is out of date and make a master list. Hopefully, that way he will also learn where and what Soya beans look like, what shelf they are on and what is around them. It will probably take a full day, especially as we will need to do the same thing in the bathroom and a couple of other draws and storage areas around the house, but that way we might stand a chance of drawing a balance line that we can both live with, without him feeling that I am picking at his effort, when what I am trying to do is teach him and I won’t feel he is being difficult as he doesn’t see it as important.

It is hard for both sides when chronic illness takes over one side of a partnership, in reality, we both live with chronic illness, he might not physically feel the pain I live with, but he feels it in other ways and has to live with all of it. I suspect that when it is the half of the partnership who did the bulk of the housework and cooking it has a way of making it harder on both sides. Adam really didn’t do a great deal of housework until I wasn’t able to, partly because he couldn’t see what I was constantly cleaning, I would see a speck of dust on one surface and cleaned the entire room, doing much of it while he was asleep before I went to work and because I was home by 3:30 each day, the rest before he came home. To him it must have felt as thought our home was magically constantly perfect, now I know he thinks that I judge everything he does, I’m human, of course I do, but I say nothing as I know he will never spend 3 hours a day every day cleaning and caring for our home, or take time off work three times a year to do nothing but wash walls, shampoo carpets and so on. That world has gone, I can’t do it and I don’t expect him to.

It’s been 4 years since I was last able to even do the lightest of housework, or household chores, Adam is still learning why I did things the way I did, like not using yellow non-lint free dusters on waxed furniture, or having more in the cupboards than we need for today. We have both found it an equally hard process for very different reasons, I doubt it is easy for anyone, yet again it is one of those things that no one warns you about or you ever think will be an issue until you find that it is. Passing on my experience without it sounding as though I am telling him what to do, is almost impossible and I have seen him boiling with anger as I try to make his life easier, as that is what I am doing, not picking holes but trying to show him how to do it as well but quicker. I doubt that there has been a single thing he has done when it comes to housework where I haven’t had to sit biting my lip and looking anywhere, but at him, as I once again I see something we have talked about and he has totally ignored or more likely totally forgotten.

I know we both get angry with each other and both of us say nothing, not because we don’t want to argue, but because we both walk around each other desperate to cause no more pain that we both already live with. Even the most basic of everyday life become a minefield that we have found our way through, not always with ease, but what I do see now with ease is why so many marriages don’t survive. When you are permanently tired, in pain and seeing what looks like lack of any care for the things you care deeply about, arguments are easy to fall into and it is easy to take that none existent lack of care, as not caring about you. I also see how totally the other side, the person who is doing their best to take on more than they have ever had to before, landing up feeling as though what they do isn’t appreciated and nothing they do is ever good enough. I know that both of us say nothing, both of us do our best not to upset the other or to start the argument that is simmering under because both of us understand how the other feels and that an argument wouldn’t change anything. There is no magic wand, no tricks, and no secrets, all you can do is hold on to the most important thing and that is the love that brought you together, the rest, well the rest is just part of the trials of life with chronic illness, no easy answers, just understanding and lot of long silences while logic replaces the anger and then love replaces the logic.

Read my blog from 2 years ago today – 01/09/12 – The gastric tube

Everything I did yesterday and so far today seems to have taken twice as long as it would normally take, I am still so tired that my body and mind feel as though all movement are being performed in slow-drying cement, harder and harder as the day passes. I again crawled off to bed early as I couldn’t stay……