Discussion: What it feels like to have significant “fatigue” rather than just being “tired”

The medical term for tiredness is “Fatigue”. It covers basically any word that could be used to describe tiredness – from exhaustion, lethargy, and listlessness, ect. It covers both physical and mental tiredness. Often both impending into each other, if a person experiences physical tiredness for long enough, it will often create a mental tiredness too.

Many of us will suffer at some point, generally, with tiredness. A fatigue. Some people, unfortunately, with chronic fatigue. Statistically, globally about 10% of the whole population suffer from insane fatigue.

But I propose a difference needs to be made.

As someone who is now trying to learn all the correct medical, difficult to say & spell latin terms, for certain presenting signs and symptoms a person may experience; and as someone who is constantly, endlessly feeling run down fatigued, I now believe that there should be a huge difference between the definition that describes tiredness and fatigue. That tiredness should be tiredness, and fatigue should mean extreme tiredness.

I remember ‘just’ tiredness well. It’s like an old friend, a recent distance memory. Tired to me meant that when you woke up after 8+ hours sleep, you would feel somewhat refreshed. Ready to go! Tiredness means that when you yawn, you know you can continue on, perhaps slower than before but you can continue. Tiredness means even though you want to go to bed, you can still do your tasks. There’s a reserve there. Just like when your car’s low gas warning light comes on. You know you have a good few miles before you really need to get gas. That’s tiredness, you can keep on going, regardless.

Fatigue is a different ball game. Fatigue almost ruins your quality of  life. And it’s confusing as hell.

Many of my patients going through cancer treatments complain of tiredness, fatigue. They talk about it in past tenses; “I used to be able to walk Adrain’s wall, now the thought of walking any distance is overwhelming.”

The thing is, I can totally relate to that feeling of overwhelming fatigue. If you try and explain it to someone who is lucky enough to never experience this extreme tiredness, fatigue, they think it’s the same as normal tiredness. And it’s not. A lot of people actually think it’s a mind over matter thing, that you could probably feel less tired if you wanted to, and it’s really not.

What makes it more difficult in us being able to define levels of fatigue is that it can’t really be scientifically or chemically measured. And if medical science has taught me anything, it seems that we’re pretty much all about evidenced based practice in chemical numbers, rather than patient-centered-based-evidence in emotions, experience and feelings.

The thing is, there seems to be very little in combating extreme fatigue. Normal tiredness, you can sleep and more often than not feel better and re-energized afterwards. No amount of sleep relieves you of the tiredness in extreme fatigue. Extreme fatigue makes you feel like you’re being slowly poisoned, that someone is pushing your head down below water. That if you were a Windows PC, you would run like you were full of firmware & viruses; frustratingly slow and lagging, delayed in every thought and movement.

I think I’ve read a lot of research papers, and looked at and tried A LOT of things that are supposed to help with fatigue.  I knew I had problems when I started considering illegally trying to get a hold of some Adderall RX as one of the side-effects is feeling energized and less tired & concentration. I didn’t, mainly because of the apparently addictive qualities. I can’t be doing with that. But I would literally do anything just to get back to my old energy levels, or even just close to them.

The advise we offer during in clinical to our patients is, if you can do some light exercise, do it.  It’s the same advice in chronic fatigue, to keep active rather than let the fatigue consume you. This is tricky business though. The fatigue has already consumed you. Do too much, and you can end up setting yourself up for a weighty fall. Do too little, it doesn’t contribute all that much. And of course, the actual act of getting up and doing it sometimes seems more of a work-out than anyone would know.

I invested in sleeping apps to analyse my sleep. On  those lucky relatively painless, night-sweat-less nights I’m literally dead in my sleep. I sleep like a good baby. So I know I sleep well.

I’ve seen 3 different “healers”. I’ve done the whole positive thinking, in denial, ignorance, rest, unrelentless bed rest, routines, sleep. I’ve had Raki. Tried massage. Tried Physiotherapy (until he told me he wanted me to be re-evaluated). I’ve done some yoga. I’ve bought so many fitness & health apps, you wouldn’t believe.  I bought a Nike+ Fuel Band to motivate me to do more exercise, like running. I joined row-fit & hurt my shoulder even more. I try and ride my bike anywhere I can. All of this is hard because running up 2 flight of stairs makes me out for the count.  I changed my diet to include even more veg and fruit. I dropped soda (most of the time) and swapped it for tea. I picked up a specially imported Yerba Mate Tea for the caffeine. I tried multi-vitamins that changed my bowel habits, and energy drinks that just ended up making me sick. I even pretended to be a smoothie maker business to be able to buy 45 packets of frozen puree Acai Berry because in the UK you can’t buy it ANYWHERE. Just in watered down juice form and power and capsules. Apparently Acai Berries are a super fruit that has so many amazing qualities in them to make you feel healthier. There are other things I can’t even remember that I’ve tried. Most of them were in the USA because those dudes are craaazzzyyy over there with their alternative medicines!

And after all of this. I still feel like shit. I can’t even begin to think about all of the money and time I have wasted chasing all of these things, hoping and wishing that it would be the thing that would eventually work. I wish I could tell you that some of this made a difference. And perhaps I am being a lil’ too hasty here. I do feel a bit of an energy improvement after I’ve exercised, but it decreases fast soon after those hormones have disappeared, and the crash is sudden and very real.

I go to bed tired.

Wake up in the middle of the night, tired.

Wake up in the morning, tired.

And I feel wussy talking about it, because what’s the big deal about being tired? Except when it lasts days, weeks, MONTHS. When it makes it hard to motivate myself to do anything, when I can’t work, can’t function, and can’t ever not feel tired. But writing this always feels therapeutic.

So, this is why I think it’s important that we understand that there are core differences between being tired, and being significantly fatigued.  And that we need to assess just how it affects others lives.  I know when my patients say to me, “I’ve been feeling so tired, so fatigued.” They’re saying to me that they just don’t feel like themselves. I get it.

And that’s what real fatigue does to you. It makes you question everything you was, and why you can’t be that person any more – the person who could multitask until 3am and get up in the morning and be totally cool about it. My old normal life is running current me into the ground.

And it’s not depression either. Because you’re not unhappy. You don’t feel sad. You just feel ridiculously tired. And when that fatigue really hits, you can’t even muster a word. You almost have to crawl home because you have no reserves left, you just have nothing left to give. And This is no exaggeration.

A friend said to me the other day about someone else & their tiredness, “I think maybe it’s a mind over matter thing”. And I flipped out, it’s a sore point for me. I tried explaining these thoughts of mine on a need for us to differentiate between tired and fatigue. And stand by it.

Because there’s nothing worse than feeling like you’re not only letting yourself down, but letting down others, your friends and co-workers, because you can’t muster the energy and enthusiasm you owe them and owe your work.

In extreme fatigue you just end up asking yourself, how do I pick myself when I have nowhere else to go from here?

There’s no foothold, nothing to firmly place your hand upon to hoist yourself up again. How does one recover from extreme fatigue when all the above doesn’t seem to work or fails and there’s no support system in place that understands this detrimental ailment?

How do you start over again?








Published by smizz

Artist → Re-evaluating life→ Rad Oncology graduate + public health worker→ @lab4living PhD-er → Want 2 make a positive difference → Rule-Breaker → LIVE DRAWZ! → councillor! → Loves cities → rides fixie → adventures → wanna be ramen master → <3 Tokyo + NYC

2 thoughts on “Discussion: What it feels like to have significant “fatigue” rather than just being “tired”

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