I have a plan for today, to do some baking. Yes, I did type that correctly, I am going to do some baking. I actually did some last week as a test for the Psyllium and discovered that a very simple soda style bread worked well, but needed something to zing up the flavour. So today I am going to make a savoury one with onion, cheese and nuts and a more sweet one with the only sweet things I really enjoy, pineapple, coconut and ginger. The additions aren’t just for flavour, they are also so I can get a better amount of nutrition out of them. With them being so filling, they have to be a meal replacement and not an addition to my daily food, I just can’t manage both. The good thing is that soda bread works and although I am not going to make it today, I also bought some yeast so I can try some real bread at some point next week. The good thing about bread is, there isn’t really any work to it, other than the point that it needs to be kneaded and I learned long ago that that doesn’t have to take hours, a couple of minutes is enough.

It feels really odd doing something as normal as baking, but I did enjoy it last week. Yes, like everything else it drains the energy out of me, but I can minimise that by simply sitting on my perching stool rather than standing. But that is the point, like everything else, it drains my energy, my energy is being drained just doing this, so what is the real difference, two or three extra trips to the kitchen, that’s all. If I manage it into my day, the difference is limited. I had more or less given up on having anything “normal” in my life ever again. I suppose because until this, my idea of baking always included a high degree of decoration and presentation, bread doesn’t really need any, especially when it is just for me. It is really hard to get my head around doing such a thing, but being forced into it has been a revelation. I had given up on doing so many things simply because I couldn’t bring them up to my high standards. It was getting expensive as I threw out so many things just because they weren’t the way I wanted them to be. When I made the soda bread last week, well to be honest if it hadn’t been just for me, I probably would have thrown it out too. To look at, it was this dark brown mass just sat there, not looking appetising in any way, but Psyllium seem to do that. The taste was more than just OK and the proof is the fact that I have now eaten it all. If I had made it with the idea that it was for both of us, well Adam would never have been given the chance to even see it, far less taste it. I have been left wondering what other things I might manage or could have done for longer if I had approached them without my perfectionist’s head on.

Our personalities are such a huge part of our lives, so it’s no surprise that it plays a huge role in our health as well. I don’t need anyone to tell me that the fact that I am by nature an optimist carries me through a lot. I always saw my perfectionist self as a positive force on my life, it drove me hard to make things as good as I could, whether it was in my personal life or at work. When I was still healthy enough to be part of the outside world, for me being a perfectionist was more than positive as people praised me for almost everything that I did. Human nature means that I thrived on it, every time I saw that other appreciated whatever it was I had done, reinforced that going that extra mile was a good thing and pushed me to do it more and more. I could see then and now, nothing negative in that in any way, but when my abilities started to fail me, well it did the opposite. It was hard enough that the praise didn’t flow as I was used to, but then it got even worse, slowly the faults started to appear and no matter how hard I tried they kept happening. Even worse than that, was the fact that my brain was failing me so badly, that I wasn’t even seeing them before others did. This perfectionist spent the last year of my working life in the office in more or less a constant start of frustration and fear of what might happen next. On that level becoming housebound was a blessing. Outside of the office environment, I could put in the hours without interruption and my work improved again, but everything else in my life was failing. Work had to come first and I didn’t have the mental or physical ability to make anything else perfect anymore and I couldn’t deal with that, so I stopped trying.

It has taken me eight years to realise that I threw away so much when I turned my back on everything just to be able to work. I’m not saying that most of it might not have had to go by now, but just that simple act of baking one loaf of soda bread made me realise that I do still have some skills that not being perfect at, doesn’t mean they can’t be done and enjoyed. Being ill was a viable reason to not even take the chance of getting something wrong, the perfectionist was still at work, using the perfect excuse. I suspect that we have all done it at some point, used our illness as an escape reason for ourselves not doing something. I have grown so used to the idea that my body can’t do anything, simply because it can’t do most things, I had missed there were things in between the two. I know how I got here but only by chance, I almost bet there are millions of routes to this point and most of us will find one of them. Maybe, ill or not, we all sometimes need a good kick up the backside and to remember that being alive is more than just breathing. All of us, have the ability, able-bodied or not, to do more than we do and I don’t have the slightest doubt about that, some of us have just forgotten how to try.

I won’t be running a marathon anytime soon, or creating and making a totally new look for myself, but I am going to at least try to use some of those skills that are sleeping inside me. I know I have to pace myself and be sensible about what I try to do but as long as I go into something without having some grand design in my head that I would have struggled to complete years ago, I am sure I can manage somethings. Cutting things out of our lives is too easy, it’s too easy to remember the pain or exhaustion something caused before, it doesn’t mean it will happen this time and as long as I enjoy it, does it really matter if the result isn’t perfect.

Read my blog from 2 years ago today – 2/06/13 – What’s best to say

I expect that anyone who has a chronic illness will have well-meaning friends and family who come across articles online which claim to be either to have the cause for your illness or a cure for it. I know they send them for all the right reasons and in the hope they have discovered something that might change your life for the better, but then you suddenly find yourself with a huge problem. How do you……