Attempting to describe fatigue to someone who has never experienced it before can be a thankless task. As an invisible symptom of MS, people often don’t understand the sheer scale of what you’re going through. Here, Jane from our Information Team offers some advice on how best to explain what you're feeling to others.
What is it like to have fatigue (it is really awful) and how can we explain fatigue to others who have never experienced it? (almost impossible)
Fatigue is a common symptom in MS but seems to be invisible to most other people. This can seem incredible to the person who is experiencing fatigue as they may be leaning against the wall or holding onto their shopping trolley or the arms of their chair as if their life depended on it.
Would it be useful to be able to explain fatigue to other people so that they understood more about the difficulties and how much fatigue can vary from day to day or from morning to afternoon? Well, yes it would, but is this possible if they’ve never experienced fatigue themselves?
Perhaps the best place to start is to tell people what it isn’t. Fatigue is not sleepy tiredness. It won’t be sorted out by having a good night’s sleep or a kip in the afternoon. Of course, somebody can be sleepy tired as well as fatigued. For example, if they’ve had trouble sleeping due to pain or spasms, then a good sleep will help that side of things but not really their fatigue.
Fatigue is worse for some people than others. It can vary from one day to the next so predicting what you can do is really hard. Bad fatigue for one person might be really struggling at work. For someone else, it could be barely being able to cross the road for a pint of milk (despite being at home resting all day). For another person, it might be getting from the bed to the toilet only by clinging on to furniture and door frames. Fatigue is a big deal.
But this just says what it is hard to do when you have fatigue. What does it actually feel like?
Not everyone experiences fatigue the same way.
In our book Living with Fatigue, people with MS describe their own experiences. Here are a few:
“As a physical sensation it reminds me of falling into quicksand/a swamp – it’s a viscous, heavy, pulling feeling, but if I try to fight it, it hurts like hell and robs me of breath. As a sound, it’s like a muted background noise of violins, scratching away, that seem to be ever increasing in speed and out of sync – while the outside world seems dampened and fading”
“Fatigue feels like being weighed down, as if you are trying to walk up to your neck in a deep, muddy river in heavy, wet clothes carrying shopping bags full of rocks”
“Fatigue feels as if I am an inflatable, and someone has pulled the airstopper out! My brain goes fuzzy and I can’t think clearly, my speech slurs, my eyesight goes and my eyes start to close – I think the room is full of smoke! Swallowing becomes more difficult, my balance gets worse, my legs feel heavy and clumsy”
These are great descriptions and should help someone who has never had fatigue have a better understanding of what it’s like.
A hangover, jet lag and the flu
Another way of explaining is to try and relate the feelings of fatigue to experiences that most people have had before. That way they should access their own memories and, hopefully, feel again the heaviness or disorientation or other unwelcome sensations so that they feel it rather than imagine it in a rather theoretical sort of way.
You could try this:
Firstly, ask them to remember the worst hangover they’ve ever had. Get them to think about what the circumstances were, exactly how they felt when they tried to get out of bed, how they staggered downstairs and how rough they felt for the rest of the day. Ask them to relive the memory strongly for a moment and then file it for later.
Then ask them to think about the worst jet lag they’ve ever had. How exhausted and disorientated were they? Did they feel almost sick? Did they feel really tired but couldn’t sleep at the right time of day? Ask them to bring this experience strongly to mind and then store that memory for a moment.
Now ask them to recall the worst flu they’ve ever had. How awful they felt all over their body, how getting out of bed was a struggle or almost impossible, how every little thing made them feel worse.
The next step is to get them to imagine what it might be like to have all three (a hangover, jet lag and flu) at the same time, to recall both the physical and the mental feelings. Horrendous! How bad would that be?
Now ramp it up and ask them to imagine that everything is ten times worse than they just imagined. It could be almost like going unconscious – a bit like fainting but without the woozy- sick sort of feeling. This is becoming unimaginable for anyone who has not been there but hopefully it makes the point about how bad fatigue can be. The frequently heard comment that “everyone gets tired sometimes” is way off the mark.
Although fatigue is very common in MS, it is possible to decrease fatigue and free up some energy. Fatigue management involves pacing yourself and using what energy you have for the most important things. It may involve asking others to help out or just accepting that not everything will get done. You can read more about managing fatigue in the A to Z of MS or about the invisible symptoms of MS in our blog.
Jane, Information Officer
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