Fatigue. One word. A whole lot of meanings.
And therein lies the difficulty for many people with MS. Everyone seems to have a take on it. General fatigue – the kind anyone can have – pales in comparison. MS fatigue is a different ballgame altogether.
There’s no one size fits all. It varies for many, can be off-the-scale bad and differs day to day, AM to PM.
You start to see the problem.
So how do you begin to explain its debilitating effects when even those close to you think it’s something you can sleep off?
We asked people with MS to describe how it feels for them. Their experiences in this video reveal a complete mental and physical shutdown that comes on without warning. It’s a must-see watch for anyone grappling with this:
Any surprises? These ones stood out for me:
- “It hurts like hell and robs me of breath”
- “a viscous, heavy, pulling feeling”
- “my brain goes fuzzy”
- “my eyesight goes”
- “swallowing becomes more difficult.”
If you don't have MS, it's not so easy to relate to, is it? It's why sharing experiences of MS fatigue can help to bring this otherwise invisible symptom to life and challenge preconceptions.
Start by sharing this video with family and friends, and work colleagues if you feel comfortable. It may help them understand your fatigue better and the fact that you may look fine - or did an hour ago - but are dealing with its effects under the surface.
It can manage expectations too and may reduce some of those well-meaning comments that downplay the reality. People often draw on their own experiences of exhaustion to empathise, without realising they can fall short. Knowing more about MS means they can choose the right words and support you better next time when your fatigue kicks in.
It also helps stop resentment building up on either side. Or the sense of isolation. We know from our Life changing: mental health and MS report that seven out of 10 of you feel fatigue has a negative effect on your mental health. Feeling listened to helps manage the frustration that comes with this unpredictable symptom. So, maybe pick a time when you’re feeling good to describe what your fatigue does to you.
If you don’t have the energy to explain, then ask family and friends to take a look at our Living with fatigue book. It’s full of practical tips to manage your fatigue, save energy and pace yourself. It will help them too.