Up to eighty-seven per cent of people with MS, including myself, experience fatigue at some point. It is important to us that people don’t think fatigue is the same as tiredness. It is the most draining experience imaginable and it can happen for no apparent reason.
I went to a talk by an occupational therapist the other night on fatigue and it’s management. As part of his presentation, he included quotes from some of the people with MS he has consulted with over the years.
I thought it would be useful to re-quote them here as I am sure these statements will resonate with the fatigued among us and go some way to help explain what it is like for others:
“Fatigue can literally reduce me to tears, for no reason, I just find I’m crying – it’s like the plug has been pulled out and my energy, almost my life feels like it is going down the drain…”
“I feel like I’m in a jail cell as I’m so tired all the time…”
“It feels as though my legs are full of lead, it’s literally like wading through treacle trying to do things…”
“It hits me like a wall and then I can’t do anything… There’s no real warning to it happening. Sometimes I’m not even sure if I’m awake.” (Oh boy, yes!)
“It’s hard to describe to someone that you’re feeling fatigued and tired when you’ve not actually done anything. I used to be so active.”
Prior to my diagnosis, when I was going through the darkest hours of a relapse, I had a number of afternoons at work where I had what can be best described as a waking sleep at my desk. It was deeply worrying to say the least and I remember the thought “What’s happening to me?” playing on a loop in my head.
Perhaps the hardest thing about fatigue is that it is invisible to everyone else. I’m not being lazy or unhelpful and I can still do everything I could do before, it is just that sometimes I can find everyday tasks exhausting.