While I am sick at home the world doesn’t stop. There are weddings. There are big shows, music festivals and other events. There are protests that I want to attend. There are real-life meet-ups for groups that have been chatting over the internet. My intended schedule for the next month is hectic: First it is the Prescott Bike Festival, to raise money for Blood Bikes. The following weekend some friends are getting married, 180 miles away from here. The week after that, we’re up in court for non-payment of council tax. (Which we disagree that we owe, due to benefit chaos caused by attempting to do the right thing.) Over Easter my wife’s parents will be visiting, and we will have a big dinner together with my parents. The weekend after that I am visiting Brighton for the weekend to meet up with other politically aware people I talk to on twitter. Then there is a gospel choir performance a few days after that. On top of all this, I have jobs that I need to do such as some work on my wife’s motorbike. Oh, and I’m moving house in the next two months.
It just isn’t going to happen like that.
At the moment I can spend around eight hours per day out of bed, and not every day. I can’t predict when I can get out of bed, or when I can do anything that is expected of me. On many days I can choose to either have a shower, OR to wash the dishes, OR to do other things that I want to do. Given that, how can I do any of the big things I just listed? In reality, I have to prioritise. I have to choose what is viable, and what is really important to me. I have to acknowledge that a really big weekend will wipe me out for a week afterwards, likely leaving me unable to even get my own food and drink and struggling to reach the bathroom. Out of all that I listed above, the bike festival will depend entirely on how I feel that day, it is not practical for me to get to the wedding, since the travel and sleeping on a friends floor will destroy me, and I can’t afford it anyway. The visiting family, I can just about handle as I will disappear off to rest lots while they are here. The trip to Brighton, I am going to manage if it kills me. Unfortunately, it just might.
This is the reality of long-term sickness and disability. This is #disabilitynormal