I so wish, that for just one day a year, we were allowed to be the person we were before we became ill. It’s not that there is any date ahead of me, that I need to be well for, it’s just there are times when I suddenly become fed-up with being ill. No, I’m not falling into depression, I’ve just got this huge desire to be me. It’s not even as though I want to go out, or do anything special, I just want to be free of pain and maddening sensations, to have a throat that swallows and doesn’t think every now and then, that it would like to try being a second stomach for a change. In fact, I wouldn’t mind, if it were spread out over different days, you know, Monday, I have arms, Tuesday, legs and so on. Being ill all the time, is just so frustrating, and yes, I do understand why many get depression, I’d be a fool if I didn’t. I have to admit, that that is one of the most maddening things to me, that so many people, seem to expect me to be wallowing in self-pity. I remember a couple of years ago, Adam came home from work and told me about a discussion, he had had with his then boss. They had been chatting over a coffee and during the conversation had started in a pitying way, about him being my carer. She was concerned about the pressure of my being housebound on him, especially, as she assumed that I would be both lonely and depressed, in her words “a difficult combination”. She was shocked, when he told her, that I wasn’t either lonely or depressed and that I, in fact, spent my time online, doing what I could to inspire others. Apparently, she was totally overwhelmed and speechless.
People make so many assumptions about what it really means to be chronically ill, and not just busy body managers. I have come across so many people, including those who have just been diagnosed, who make the same assumptions. So many, that I can’t help wondering, if some become depressed, because, it is what is expected of them. I know that sounds odd and I don’t mean in any way, that any of them are putting it on, but our expectations, can often lead us into that reality, somewhat similar to the placibo effect. Almost as though because it’s expected, that we have some sort of permission or order to do whatever it is, and not just depression. I know for a fact, that in my those first few months post diagnosis, I for one, at first rapidly became much, much iller than I had been. I had spent so many years covering up, pretending there was nothing wrong, as that is what the doctors kept telling me, that when I was diagnosed, I suddenly had permission to be ill, and that’s just what I was. Not only did I act and appear worse, I felt it, but I had no reason to, nothing had changed, other than at last, I had a set of names for what was wrong with me. I was living to a set of expectations, ones formed by what I knew about my conditions and what I had over the years, seen in other people. I had to snap myself out of it, if I had managed prediagnosis, I could manage post. It took me quite a while to pull myself round and to just get on with life, as it was, rather than as my expectation of it. I have suffered badly with clinical depression a very long time ago, so deeply that I spent six weeks in the hospital. In some ways, I was lucky, as I had learned from that, the warning signs and what to do about it. Talk and talk and talk. I think my friends and even Adam got a little fed-up with me, as I took any opportunity to talk about myself, and how I was feeling, not the spasms and so on, but the rest of it. It was also back then, that I started working on the smile theory, the more you find to make you smile, the happier you truly become. It doesn’t just work, it’s fun as well, which is something we all need.
If you can control your expectations, you will without a doubt, have a happier life, ill or not. I have worked on that one for so long, that my dreams are no longer that better job, or the bigger house and fancy holidays, my dreams are a day free of spasms in my legs. Yes, I know you read the beginning of this post and assumed that it was a mad notion, but if a day off, is my ultimate dream, my expectations from life, clearly aren’t grandiose. No, I’m not talking about giving up on dreaming, we all need to, but expectations and dreams, should be two very different things. Yesterday for lunch, I had a piece of baked brie, with cranberry sauce and a side order of black pudding, followed by a Mincemeat pie with a dollop of cream. I was in flavour heaven, it was sublime. My expectations are small, my happiness is high, that lunch kept me smiling for hours. Just as I smile daily when I read the tweets of people I’ve made smile, happiness grows and when shared, grows faster. Changing my expectations of life was hard work to begin with, but over the years as my health failed, and reality dawned, that there was no cure and never would be in time for me, I had to adjust my needs of life. There is no greater need than happiness, especially when you’re dying.
I get fed-up at times, frustrated often and occasionally, even a little down, but it never lasts. I have a few very precious things in my life, that mean I’m more than happy to go on living. I have Adam and Teressa, their love is essential and prized greatly. I have everyone on Twitter and those who read my rambling here, what more does anyone need, well other the exceptionally good meal. Those waiting in the wings, waiting to see me crumble and join the majority, can stuff themselves. I have too much to do, to many people who care and need me, to give in and I also, still have my dreams, which include, helping others to stay happy too. Listen to the marketing men, the glossy magazines and the lifestyle media and my life sounds unbearable. Listen to me, the person who’s living it and I’m telling you, no matter what my health has done to me already, or what it will do in the future, as long as I have those few things, I’m happy.
Please read my blog from 2 years ago today – 06/01/2014 – Content in the now
I have at last received a reply from the post office about the fact they keep marking on the envelopes that there was no access that day, not just for one day but the worst was a whole week. Since I have been…..