26 March 2014

What does fatigue feel like?  It's easier to say what it's not like. It's not feeling tired. Tired is what I feel most of the time. I wake up after a good night's sleep and still feel tired. I drive down motorways and see the signs "tiredness kills"; if I didn't drive when I felt tired I would never drive. But then if I didn't get out of bed because I felt tired, I'd never get out of bed. 

Fatigue is beyond tired. Fatigue makes me lose concentration. Fatigue makes me drop a lighted cigarette because I can't feel properly. Fatigue makes it near impossible to walk. Or even stand up. 

Fatigue is impossible to predict. It means that I have to set off for home a couple of hours before I judge that my energy will be exhausted to make sure I will be able to get myself to bed. 

Fatigue is the biggest threat to my living independently, because it sometimes leads me to slowly collapse to the floor. Once that happens I cannot get up unaided. Unless I wait for as long as it takes for my energy reserves to recover enough for me to haul myself up. 

When I first started feeling fatigued I was prescribed modafinil. I still take them and without I find it difficult to function. Although a few cans of red bull is a poor substitute. 

My neurologist told me that modafinil isn't prescribed any more for fatigue. And there's no replacement. I'd be very interested to know if any neurologists or pharmacists or pharmacologists have MS and what they'd want to take for fatigue.