The last thing I needed yesterday was to burn my hand, but that is exactly what I did. Adam had been home from work and had offered several times to get me some lunch, but I said that I was fine. It couldn’t have been more than half an hour after he left that I suddenly had this mad idea that I wanted an omelette for lunch. Since I made the decision that the wheelchair was my next move I have found myself doing daft things. All the sort of thing that once I am in it, I won’t be able to do alone, or without getting out of it, which would totally undo my reasons for it in the first place. So there I was happily beating eggs and warming the frying pan, thinking as always what could possibly go wrong, there is nothing simpler than an omelette. It went wrong when I lifted the pan to put my omelette on the plate and it slipped in my not so good grasp. Instinct works faster than logic and swiftly shifted my other hand into a position that meant lunch wasn’t on the floor and burnt the whole side of my index finger on my left hand. I have spent so many years with my hands being covered in equally stupid burns that at first I ignored it while I ate my lunch. I know it should have been the cold water first, but I didn’t want a cold omelette. I ran it under the tap, but the pain was screaming at me and I knew I had to do something else. It was then that I found a new and creative use for a Psyllium pancake. It needed defrosting and lying over my finger seemed like an excellent new way to do it. Well, it helped with the pain and it also defrosted it perfectly.

I have known for a long time that things like cooking are a danger zone, but like so many other things in life, I just can’t totally give up on them. This thing with the wheelchair has put me further into the danger zone, it’s almost like I have to prove to myself in as many painful ways as possible that my decision is the right one. This is the second stupid cooking decision I have made in just a couple of days. The other one didn’t leave me scarred, it just left me with arms so knackered that they were of little use for the rest of the day. Apart from for the Psyllium tests and pancakes, I haven’t done any cooking for well over 2 years, yet suddenly here I am trying to do what I can’t. I am surprised that I haven’t decided to spring clean the house, that’s something I haven’t done for about 9 years. Why did I even think of that? There’s no way I am even going to try that one, I’m not that deluded. I didn’t just burn myself, I also came up with a question that has been racing around my head ever since. Why do scrambled eggs and omelettes taste so different when they are the almost identical in ingredients and cooking? Apart from the slight carbonising process of making the omelette golden on one side I can’t come up with one. Any answers? If only it was the real question, I know all too well it was nothing but a distraction, a good one, but just a distraction.

I have a list of things that I need to do here in the house, things that are the true tasks ahead of me that will get everything running. I have bought all the things that I need, all I need is for them to arrive and to do the biggest job, for those kitchen cupboards to be sorted out. It’s not even a big task, all I have to do is sort out and empty one, so Adam can move stuff over then I can put everything I want in the position I want them in, in the first one. I just can’t seem to get started on them. It’s like if I don’t do it, I can’t move on and moving on is what I am avoiding. I don’t know why this has hit me at this point in my illness, maybe because for the first time I can’t compensate for it. It’s a fact, a great big unchangeable fact and not one that I can paint pretty colours or turn into something it isn’t. I have lived happily inside my cocoon with nothing changing, nothing being anything other than it has always been within this place. Everything my health has brought until now, belong outside of my cocoon, this one is inside it and it’s changing it and the worst of it is, this is just the start.

I realised a long time ago that if you are going to stay out of the overpowering world of depression, that you can’t ignore anything that is persistently upsetting you. If you find yourself hurting, in tears or just wanting to cry, then there is something that has to be dealt with and dealt with properly. Yes, I know we all have odd days when our emotions are just closer to the surface than other, it’s not those I am talking about, this is pain deep inside of you and it has to be understood worked through and never hidden or buried. The most dangerous advice I have ever heard was “to brush yourself down, put on a smile and get on with it.” It may work with physical pain, but not with emotional pain. Do that and you are asking for trouble in the future. As I said yesterday, this though is different from any other phase or spell of adjustment that I have gone through, but I knew I would face it one day, just not now. I thought when this time came that I had to let my home be violated by my health, that I would breeze my way through it just as I have done with all the rest of it. That the point that I would find myself overpowered by my health would probably be when the day came that I had to face my home being physically changed for my health. When rails appeared where to me they would be nothing but an eyesore or furniture had to be moved or removed, changing all my careful planning of their design and appearance. Yet, here I am feeling useless and devastated, by such small changes. You would think someone had told me that I was going to die in six months instead of the expected now 8 years, not that I had simply moved into a long expected phase of that process.

Dealing with your emotions and reactions is as proactive as dealing with anything physical, in some ways, it is more important. So I sat yesterday for a while in the two rooms where having my nebulizer in would make the most sense. I normally take my meds in the kitchen, but to have it in there would mean without a doubt it would eventually land up on the counter all the time. I need to be able to use it when I am on my own, so getting it in and out of cupboards, isn’t practical. It has to be close to a socket and not somewhere where I have to climb over or move furniture just to plug it in. Oddly, to some people, but not me, most sockets in our house are totally hidden, despite the fact I spent a fortune changing them all to brass or steel so that they blended in better with the rooms décor and of course, they all matched with the light switches that I changed as well. All the sockets are hidden behind furniture, totally hidden and perfect, it works for me. In some ways, that is a great example of how right things have to be, for me to be happy. Not being able to see a single one of them, isn’t an excuse for them to be horrid white plastic. Everything, seen or not has to be perfect, otherwise it hurts me. I have seen already  and watched enough of our once perfect home fall apart without any more joining the bedlam. Unfortunately, the best thing I can do with the nebulizer is to sort of hide it. It can sit down the side of the main settee and then plugged into an extension cable. Wheelchair or not, I can get to it there and use it aided or not, but anyone coming into the room wouldn’t be able to see it. Unlike Adams idea of putting it under the coffee table, where it would be visible to all, especially me. No, Adam doesn’t get it either and he’s lived with me for over 17 years now.

For my mind to be at ease with what is happening has to partly be the obvious things of adjusting to the new, accepting the change and the truth of what it all means, but it also has to maintain what is the core of me. I have already lost nearly all of the visible person I once was, but I am not going to let go of the invisible person, the one who still exists inside, just hidden by my out of control health.

Please read my blog from 2 years ago – 10/09/2013 – Second class care

I woke yesterday in pain and the pain continued through out the day, by the time it was evening and I had permissions to actually go to my bed and stay there, I really didn’t know how to sit any longer. All the pain was from round the lower edge of my ribcage, worse on the…..