As such I've been thinking about it quite a lot recently.
A warning as we start - this post begins with a bit of a moan. Sometimes unpleasant things happen as a result of being ill and I don't see anything particularly beneficial in cushioning that fact by surrounding it with rainbows and pixies. Whilst this blog is a place of positivity, I'm firmly against the idea of it ever becoming unrealistic.
Part of my new job is scribing for meetings anywhere in the country and this week's particular meeting was about 100 miles away. My hometown of Sheffield sits bang smack in the middle of the route so I decided to break the first leg of the journey up and take the opportunity to spend an evening with my Dad. I thought this would be a sensible move and would make things easier for me.
This turned out to be a bad move. Unbeknownst to me there was a huge incident on the motorway and so a huge of delay of at least four hours right on top of my junction of choice. The tail back reached some three junctions back northward and I escaped at the first opportunity hoping to approach Sheffield the long "back way" round.
As a plan this had little wrong with it - except the fact that most of South Yorkshire had the same idea. A journey of usually just over an hour ended up taking nearly three. It was 28° in my car which doesn't have air conditioning and the crawling progression allowed virtually no breeze to be built up via movement. The main problem however was that my legs, used to a routine of stretching and exercise each evening, locked up. The muscles burned and my knees and ankles started to feel like someone had taken a sledge hammer to them.
(No, really? If you hadn't clarified that I certainly wouldn't have noticed the miles of stationary traffic. Image courtesy of petrolblog.com)
When I eventually arrived my Dad had to lift me out of the car and carry my inside. To put that in some perspective the last time he had to do that I was 12 and had acute appendicitis. Having it be necessary again at 23 made me feel less than spectacular, it must be said. Thankfully with rest and heat the problem subsided enough to be bearable for the rest of the night.
The point of this anecdote? An illustration of the truth behind the old adage: the more you plan, the more room you have for things to go wrong.
Understandably as a chronic pain and autoimmune patient I do a lot of planning before undertaking anything particularly momentous or complex, and in essence that is sensible. That way I have more time to think through potential problems, weigh up risks and make a mental list of things I might need to have with me. Despite said aforementioned adage I generally feel better having done all that.
The spanner in the works is that Petunia is a spiteful hag, and can and will play up whenever she feels like it and care not a whit how much planning I may or may not have done.
I'm sure other sufferers will recognise this concept - the cold hard truth of these illnesses is that not only are they invisible, they are capricious and unpredictable to a fault. No matter how careful you are, this truth will eventually prove your undoing at one point or another.
My question to readers therefore is this: do we allow our lives to be put on hold as a result? Do we sacrifice all the things we'd like to do against that intangible possibility?
Over my dead body.
I've said this before in previous posts, but I'm a firm subscriber to the school of the thought that, illness or not, life is for living and not just existing. If you never did anything which carried an element of risk, then sad to say you would never do anything at all. Obviously everyone's capabilities will differ because their conditions are wholly individual, and despite what I've just said everyone will inevitably have things which are completely beyond their health's capabilities.
Regular readers will know my next big step coming up is attending Bloodstock Open Air - I don't want to come across for even one moment as if I'm assuming that sort of thing should be a standard for other patients.
Generally speaking though, each morning you wake up with chronic ill health you could possibly have a flare up that day. You could also be hit by a bus, or win the lottery. You will never know until you try. In my eyes it's better to meet the likelihood of a sudden flare up with equanimity - these things happen, as we know - and continue on with whatever you set out to do.
There are no standards except the ones you set for yourself. In some ways what I say and what one hundred other patients say is all just so much expended oxygen.
On a related note, a girl approached me recently to give me her opinions on the blog. I've always welcomed feedback both positive and negative, particularly the latter as it gives me scope to improve. The girl was a complete stranger and suffice to say that her opinions were poorly informed and her manner quite rude. Her main point however was that I make a terrible spokesperson because "You have to be a damned sight more attractive than you if you want people to pay attention to anything you have to say."
Now, if I let her words be the standard I could let the risk of her being correct stop me writing The Retired Bridgeburner. Taken a step further I'd end up never leaving the house for fear that whatever I set my hand to my efforts would be completely wasted because I don't look like a model.
However, I won't do so.
Sorry my dear, but I have a festival to get to!
Do you have any thoughts on how you approach the inevitable unpredictability of your condition? Feel free to open discussion with comments below.
Wishing you all many spoons xx