Your Tired versus My Chronic Fatigue (how do I describe what CFS feels like?)

Over the years, my friends and families have stopped asking me how I am. This is because every single time, the answer will invariably be “tired.”
I mean why lie about it? There is no getting away from the fact that I look tired. The bags under my eyes have bags. I walk like a woman who has been condemned to the gallows and I’m just waiting for someone to ask my sixty-seven year old mother if I’m HER mum.
Of course if you’re a stranger, or the girl at the check out and you ask me how I am, I will answer with the obligatory “I’m fine,” when what I really want to say is, “Are you sitting comfortably? Then I will begin. It all begun in the summer of…” before giving them a long history of my pain and suffering (anyone for a steamy hot cup of over-dramatic?) in great detail. But I don’t.

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The thing is, if you tell someone that you’re tired, the probability that they will answer with “me too” is 3/9 versus the probability that they will answer with “Oh you poor thing” which is 2/9. If that is the case, then the probability of “me to” will be far greater than the probability of”you poor thing”, with “me too” being the more likely outcome…not really, I just made that shit up.
But the answer “me too” is sometimes a hard one to take and makes one feel extremely stabby. It’s not that I have the monopoly on tiredness, but unless the other person is also suffering from chronic fatigue, it’s difficult for me to equate the two.

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So how do I go about describing to them how my fatigue is different from their tiredness when I can hardly describe it to myself? How do I make them see that it isn’t just a fancy name for being extremely tired, that switching on the laptop, picking up the phone or simply just reading, is an exhausting experience? And anyone who has Fibro can tell you just how draining taking a shower is.
It seems a strange thing calling tiredness debilitating, but that’s what chronic fatigue is. It makes you weak and unable to do the most menial of tasks. Even that last paragraph took more than 45 minutes to write because I had to rest a couple of time in between typing. It clouds your mind and weighs you down so that you can’t put one foot in front of the other or raise your arms. Sometimes it feels so oppressive that it appears as though your whole body is sinking into the ground. Everything that you do, feels like you’re doing it whilst wading in a few inches of mud or as though you’re forever swimming against the tide.

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I could ask them to imagine having the flu 24 hours, 7 days a week, 365 days a year, although for some, it comes and goes. Or telling them that even if I did manage t get 10 hours of slumber, the chances are that I would feel even worse than I did before I went to sleep. And what about the muscle pain, the sore throats, the headaches, the swelling and stiff joints, the chronic cough and nausea etc? What about the psychology symptoms as well as the physical? What about the impact that it has on friendships and relationships? How do I explain all that to someone who just thinks that I’m tired?
The fact of the matter is that I don’t. It’s so much easier just to say I’m fine, and so I do. Like many people with a chronic illness, we paint on our smiles and let the world think that all is sunshine and lollipop, and all the while, we continue to suffer silently.
I’m not trying to demean those who say they are tired. Whether you’re stressed, over-worked, pregnant, or running around after a handful of womb-fruits, tiredness can have a detrimental effect on anyone. I’m just fed up with people assuming that ‘my tiredness’ is an over-exaggeration, or something that can be easily remedied by getting a good night’s rest. But wouldn’t it be great if it could?

18 brilliant descriptions on what Chronic Fatigue feels like.

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4 thoughts on “Your Tired versus My Chronic Fatigue (how do I describe what CFS feels like?)

  1. Excellent post, Lily. I hope people who don’t realize the difference will read this and try to understand. There is truly no comparison between the general tiredness people have from running around or lack of sleep and the debilitating exhaustion that people have who suffer from chronic fatigue. Those of us who don’t have chronic fatigue or fibro can only empathize, we really cannot feel the enormity of what it feels like and how devastatingly it impacts someone’s life. I cannot even imagine taking 45 mins to write a few lines let alone with headache, swelling, and all the rest. I don’t blame you one bit for being fed up with those who think it’s all an over-exaggeration. Many people really do need to be educated about chronic fatigue. My mother-in-law has it and I see the way some members of the family roll their eyes and act like she’s just a hypochondriac. I don’t think that’s fair or right. I hope your post will help some people think about it and understand. Hugs, my friend!

    Liked by 1 person

    • Thank you Madilyn. Your poor mother-in-law, that’s awful, but that’s also probably the case for a lot of those with CFS.
      You’re absolutely right, there is no comparison, but how can people understand something without knowing what it feels like? In that sense, I get people’s judgement that there is nothing beyond extreme tiredness and therefore we must be exaggerating or lying. There certainly does need to be more in the way of education and although others may never be able to fully comprehend what having chronic fatigue feels like, empathy and compassion go a long way.
      To tell you the truth Madilyn, no one’s really reading, but if one person does somehow stumble across this post and it helps them, then it’s all good. 🙂 xx

      Liked by 1 person

  2. Oh Lily. You are so on point with this. I remember being fatigued all thru my chemo and for years afterward and attempting to explain to people the difference between being tired and being truly fatigued. And you’re so right, not to take away the fact that people are tired or feeling like they’ve been run ragged but that doesn’t even come close to being fatigued. Wading thru mud is an excellent description. I’ve had days where I was stuck in it! I know you have too and I so feel for you Lily. ❤

    Liked by 1 person

    • Karen, when a friend of mine was going through chemo, she used to say that she was ‘bone weary.’ I never fully understood what she meant and just thought she was extremely tired. Now I get it. (that and the extreme nausea that she was also going through) It’s the kind of tired that seeps into your bones and drains the life out of you. Like my friend, I’m not sure how you coped with your prognosis or the side effects of chemo, without having a list of other ailments. ❤ And yeah, I've been stuck in that mud too. Sometimes it just gets too damn exhausting to continue to struggle out of it and so you stay stuck until you gather enough strength to pull yourself out again. But we're survivors right? We will go through this life, kicking, screaming and cussing all the way! 🙂 xx

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