Telling people what it's like to live with brain damage is one of the most important things I do. 'Imagining' life with brain damage is impossible. Unless you're living on my side of the fence, you can have no understanding whatever of how it feels.
That might sound smug; it might sound condescending to some, but it's true. I often speak to people who don't actually believe that stroke-fatigue is 'a thing'. Rather than the truth, which is that stroke-fatigue is your knackered brain saying it's had enough and needs rest now, some people see it as an excuse - a reason to be lazy.
That misunderstanding is why my Warrior tattoo and all my branding carries the verse "I fight for my health every day in ways most people don't understand; I'm not lazy, I'm a Warrior''. It's why I put out a social media post on Monday which was intended to give some insight into stroke fatigue. It said this: ''Don't believe stroke-fatigue is a thing? Let me tell you about my morning. Up at 8.30 to feed dog and cat, into town to replace mangled cashcard (note to self - don't sit on them), home to write and send confirmation email for 4Networking Tamworth breakfast on Thursday, greet usual Monday 11am visitor, start to feel rubbish, need to go to bed, fall asleep, wake up three hours later. That's what stroke-fatigue does. Please don't work yourself into a stroke and have to deal with this every day of your life.''
It was intended to make people think, especially the last sentence. It was intended to make them realise that having to go to sleep for three hours on a Monday lunchtime is not a choice for me, it's a necessity. If I don't do it, I will simply be unable to function. My brain would decide it was going to sleep anyway and I'd find myself sound asleep where I sat, eventually waking up God knows when.
I was talking to a fellow strokie this week who has a heated pad to rest on because of the various aches and pains she suffers. She told me that even the heat from the pad can exhaust her brain and make her fall asleep. She has suddenly disappeared in the middle of one of our text conversations, only to reappear 30 minutes later and say: "sorry, I dozed off! (at 3pm!!).
My post prompted a reply from someone on Facebook who commented that a friend of hers was suffering similar tiredness after a nasty fall which left her unconscious for a week in hospital, with no memory at all of three of those days.
That made me want to point out again how delicate is the human brain. It comprises about 75 per cent water, is the fattiest organ in the body (about 60% of the solid matter in the brain is fat) and has the texture of blancmange or tofu. And yet we bash it around inside our skulls and put the 100 billion neurons inside it under enormous pressure every day of our lives. Is it any wonder if it sometimes decides it can't cope any more?
I have often described the pain I felt when having my stroke as: 'like having an atom bomb go off in my head' as an artery burst and the flow of blood to my brain was blocked. Don't fancy having an atom bomb go off in your head? In that case, please take care of your brain. Feed and water it properly, give it rest when it needs.
If you do, it will serve you very well as what it is, which is the greatest piece of kit ever invented. If you don't, it might not - and as I discover every day of my life, that's the worst feeling in the world.