My Experience with Fatigue

Why do people with MS struggle with fatigue? No one knows. It’s one of the most common symptom found in people with Multiple Sclerosis, it affects nearly 80% of patients with the disease. Personally, I go through 2 different types of fatigue. One is general sleepiness or feeling mentally tired; the other is physical and mental fatigue. I’ll be doing my best to make it as relatable as possible so that everyone can get a better understanding of how it actually feels.

Quick basics about MS fatigue:

–          Usually happens on a daily basis

–          Might happen early in the morning, even if you’ve had a goodnight’s sleep

–          Tends to worsen as the day progresses

–          Tends to be aggravated by heat and humidity

–          Comes on easily and suddenly

–          MS fatigue can generally be much worse than “normal” fatigue

–          Is more likely to interfere with daily responsibilities and activities

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So, let’s get into the description of how it feels for me. For the sake of this blog I will divide both types into A (general fatigue) and B (physical fatigue).

Fatigue A:

This first type is a general feeling of tiredness. Imagine going a full night without sleeping. By morning you’re tired, by afternoon you’re dying for a nap, by evening you’re pure exhausted. You know the feeling you get after doing an activity for more than 3 or 4 hours, for example, writing an essay, studying for an exam, and working. After you spend so much time doing these activities without a break you find it more and more difficult to concentrate on anything else. With every activity done you drain more and more energy from your body.

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Sitting down, you stare off into space. Blanking out like this is a regular occurrence. Concentration levels are low and only get lower. Watching TV you start to miss parts of your programme. When did he get shot? When did they score? How did she do that? All you want to do is pay attention, but, ironically that’s the hardest thing for you to do.

A funky thing about fatigue in MS is that one minute you can be absolutely fine, you’re feeling fresh and awake. Then BAM! All of a sudden the life is sucked out of you and you have no energy whatsoever. You have no drive left to do anything; in the blink of an eye you’re exhausted.

Fatigue B:

The second type of fatigue is physical. With this there is increased weakness after repeated activity. This is pretty common with walking and such.

 

Usually when one says that they are tired they get replies such as “you should exercise more. Get some more fresh air. Change your diet. Go to bed early.” Say that to someone who suffers from an invisible illness like chronic fatigue. When someone like me, who suffers from fatigue because of MS, says that I’m tired, I really mean it. I don’t just mean I’m tired let’s take a 10 minute nap and I will be bouncing off of the walls again. Being tired is not the same as being fatigued or exhausted. Thanks to fatigue, my body is lifeless, and like a dead weight. My concentration is non-existent; focusing on one thing for a certain amount of time is extremely difficult. Ironically though, some people with fatigue suffer from insomnia too. I could be energy less, down and withdrawn. But, people don’t get that when I say I feel tired. They automatically assume I didn’t sleep well, whereas, that is not the case for people with MS who suffer from fatigue. We could sleep for days and still wake up tired. I don’t have this feeling every day, but, easily 5 days out of 7.

 

Another side effect of fatigue or “severe tiredness” is lack of enthusiasm. Definitely for me, I lose all interest in everything and anything. Just sitting down staring off into space or lying down in bed is about all I am up to. You could tell me that George Clooney and Beyoncé were downstairs having a cup of tea and I’d not only lack the energy to get out of my bed, but, I’d also give this littlest shit about them. My mind would just be completely blank; I wouldn’t be able to sustain a trail of thought for long. I’d forget what it was that I was thinking about or why I was thinking about it. It’s like when someone talks to you and you can see their lips move, you can hear noise coming from them, but you haven’t the slightest idea what they’re talking about.

 

So, safe to say that fatigue in MS, at least the fatigue I experience, sucks. It’s fine if you have nothing to do and have nothing planned. But, having to turn down invitations, cancel plans and feel like shite isn’t very pleasant. So, next time I say that I’m tired, I really am!