I'm not just tired.......

Stroke fatigue is one of the most difficult and debilitating things about living as a stroke-survivor. It’s a kind of crushing, all-enveloping, tiredness that takes over the brain and body and leaves a person almost unable to function as a normal human being.

In simple terms, stroke fatigue is the result of a mixture of physical and emotional factors. After a stroke, your brain and body are healing, a process which takes up a lot of energy. In addition, simple tasks like walking, talking and thinking use up far more energy than before the stroke. Emotional problems like depression and anxiety, which are common in stroke-survivors, also add to tiredness.

The best analogy for it I’ve ever heard is this, told to me by an occupational therapist in the weeks after my stroke: You’re trying to get from Birmingham to London by car, but the M1 is shut, so you have to go down the A5. You haven’t used the A5 for 50 years, so you have to read all the road signs, think about which exit to take at every roundabout and, obviously, you can’t go as fast.

So the whole journey takes more time, more effort and more energy. You get to London in the end, but it takes 50% longer than if you had gone down the M1. That’s life as a stroke survivor. More prosaically, a fellow-strokie once told me: “Our brains have had a damn good kicking. Is it any wonder that they get tired?”.

I have told these stories before in this blog, but they need telling and re-telling because they are so important and stroke fatigue is so misunderstood. Figures from the brain-injury charity Headway show that 75% of brain-injury survivors need help to understand the effect fatigue has on them; the same percentage feel that people in their lives do not understand their fatigue.

For the millionth time, it has nothing whatsoever to do with what time we go to bed or what time we get up. As long as we get a sensible amount of sleep every night, that part of our lives is dealt with. But people have to understand that we all go into each day with a limited amount of energy, much like having a full tank of fuel in our car. But brain-injury survivors use that energy at a much quicker rate than ‘normal’ people and if we don’t replenish it, we are running on fumes by the end of the day.

In my case, I absolutely have to rest for between 45 minutes and an hour each afternoon to replenish my energy tank. If I don’t, I become miserable, ratty and even more stressed than normal - which takes up more energy and the vicious circle begins again.

I’ve been saying this in all my stroke-awareness work for at least three years and it frustrates me that I still get ‘‘Well, if you went to bed at a decent hour….” from those around me. THAT HAS ABSOLUTELY NOTHING TO DO WITH IT. I go to bed at 11.30 most nights. That would be an issue if I was getting up at 4.30am for work. As it is, I am retired and I rarely get up before 9am. Nine-and-a-half hours is more than enough, even for a brain-injury survivor, but think again about that energy tank and its’ limited capacity. I couldn’t fill it any more even if I slept for 12 hours and the mere fact that simple tasks like walking and talking use up more energy than they did pre-stroke cannot be avoided.

So please don’t tell me I’m ‘just’ tired. I’m not. I’m doing my best. I’m sure you’re tired too - it’s the nature of modern life - but being tired with a fully-functioning brain and being tired with a stroke-survivor’s brain are different things. Trying to make people understand that is one of the most important reasons why I write this blog.