A about a week or so ago, someone posted on Facebook about how they try to maintain a positive outlook and how this helps them get through the day and cope with their condition. This gave rise to other comments both from people agreeing that a positive attitude helps, and some from people with a more negative outlook.
Now I'm not going to tell you that I've got the answer to what attitude will help you best, or that you should follow my example. Each of us, needs to find our own ways of coping that work for us.
When you're diagnosed with a chronic condition, and when the prognosis starts to sink in, along with the realisation of the impact this will have on your life. it is inevitably going to have an effect on how you feel and how you approach life.
To me there are two ways of going. One is that it can overwhelm you and take over your life, and this can lead to depression and despair. I often describe this as being a miserable old man, who sits in a chair and spends his life moaning about how awful his life is.
The other, is to accept what you have got, and to get on with your life. To concentrate on the good things in your life and get on with living it.
And I realise that that's a fairly simplistic way of looking at it, but most people to some degree fall into one of these two areas.
I was diagnosed with Dermatomyositis at age 17, and to me I had too much life left to live, to let it take over my life, or to define me. I remember a friend saying to me, that he could not believe how happy I was, and how I could laugh about the things that were happening to me. My reply was, "Well how else am I supposed to be?"
It wasn't really a conscious decision to be like that but I was too young to let this condition control who I was and what I could do. It just seemed better to get on with my life and live it as best and as fully as I could. I'd always rather have a laugh and a joke about things, and didn't see why that should change now.
You can say that this attitude is brave or strong, but to me it just seemed the right way to approach things. Either that, or I was too stupid to really understand what was going on.
I'm quite a practical man. My job was as a Business Analyst/Project Manager, and some of that role meant that I was faced with problems, and needed to find the best solutions. I also needed to make risk and cost benefits assessments. I have transferred those skills to my personal life and to how I approach my condition.
When I find I can't do something, or something is becoming more difficult, I will think about the best solution, and then look to see what is available to help me achieve what I want. Sometimes I don't get the answer first time, but generally I get there in the end.
Recently I've been having a problem with a sore and uncomfortable bottom. This has impacted on my standing in my Levo C3 stand up powered wheelchair. My initial thought was that I needed to get a better cushion for the chair, as the one currently there is quite thin. However, after looking at various options, it was apparent that the existing cushion was the right one for the chair, as you could not have one any thicker, as this might inhibit how you stood in the chair.
So I then needed another solution. I looked at various pads that you could place on the cushion, but the difficulties with these were that they would move during transfers and then not be positioned correctly once you are fully in the chair.
Eventually, I started looking at silicone pads, similar to those that women use to enhance the size of their bottoms. (Why?). These pads were soft and were designed to go on the bottom, exactly where I was getting the discomfort. They could easily be put in place after I had transferred and not impact on my standing. So I bought a pack, and they work. It might not be the solution that works for everyone, or that anyone else might think of, but it works for me.
Many people have faith, of one kind of another, that they use to give them strength to help them cope, and I wouldn't knock that for a moment. You need to use anything you can, and draw inspiration and strength where you can. I don't have any faith, but I understand its place, and I would never criticise anyone for holding on to their beliefs.
However, there are two sayings which people often say to justify why you have a condition.
The first is "Everything happens for a reason."
I simply don't believe this can be true. What possible reason can there be for all the pain, discomfort and suffering that occurs in the world.
I have been friends with a couple since we worked together in the late 90's. About 9 years ago, she was diagnosed with breast cancer, and despite repeated treatments and operations, eventually it spread, and she passed away after a battle of almost 2 years. She left behind a husband, who had lost his soul-mate, and a young son, who had lost his mum. What is the reason for that?
Things happen - and that's it. There isn't a reason I can see, or some grand design that we aren't party to. Whether its a good thing or a bad thing, they're just random things that happen.
The other is, "You get what you can cope with."
Well that covers everyone that copes well with things. But what about all those people who don't cope. The people who find themselves ill and then hide themselves away. The people who sit and moan, and complain about how hard life is and how unlucky they have been.
To me, things happen, and how you cope is down to the individual. For me, I have a chronic condition - or two - but I won't let it control me or define who I am. I'd rather be positive about my life and the way I can live it. Concentrate on what I can do, rather moan about what I can no longer do. And I'd much rather have a laugh and a joke.
But that might not work for everyone.
Each of us needs to find what works for us. I'm not going to criticise someone for being negative, or for getting down about their conditions. Nor am I going to put someone down for holding a faith, if that helps them find solace and strength. Its about finding a way through, to enabling each of us to get through the day, and hopefully make the most of our lives.
And this is why the support groups, many of us belong to, are so important. Because they bring all of us together, with our different personalities, ideas, faiths and attitudes, and enable us to be there for each other. Not to judge or criticise, but to say, "I'm there for you," regardless of who or where you are.
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