Chronic Fatigue, I’ve got beef with you

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There’s a story behind everything, and there’s a reason behind everything too. And this is very much the case with something like chronic fatigue. But I don’t give a shit about that right now. The name never ever does it justice. In fact, I hate the name but I still use it because I don’t know what else to say. To me, it’s just one bloody blanket term for about 1,23435,004 symptoms. I feel like it should be called “Everything hurts, I feel rough as a dog, I’m gonna throw up and I’m sensitive as hell to anything and everything”, but it doesn’t roll off the tongue as easily. It’s not so much the tiredness that derails me as much anymore (although this is still very much a feature), it’s the array of other symptoms – the sense of illhealth & such heightened physical sensitivities – that derail right now. That’s why I hate this blanket term, because the tiredness is actually often only an edge of the experience.

Beneath this term/title is a shed load of stuff I long to explain, work out or share. But I’m over that. I’ve done enough of that, so I use this title because I just don’t know what else to say. I’m over the constant research of myself, and the attempt to describe or explain the daily maze of symptoms to others. The way it fluctuates, settles and then explodes within a matter of hours or minutes. Right now I’m all about letting go and just going with what is. I cannot tell you how much of a relief this is, and actually I see it to be a sign of health too. I don’t care about the why, I care about the what.

I care about the way it pisses me off. I care about how hard it is to explain, so it leaves me hardly ever bothering. I care about how fucking confusing it is. I care about how it makes life just feel like such fucking hard work, all. the. time. I care about the way I just get so used to it. I care about the tidal waves of “shouldn’t be” that hit me… I shouldn’t be feeling like this at age TWENTY FIVE. I should be the skipping spring chicken I actually am beneath this cruddy thing.

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Yes, chronic fatigue teaches you things. Yes, it brings you valuable lessons that are well needed. Yes, it makes you grow into a overall fucking WONDERFUL human being…Yes yes yes, blah blah blah… I notice that it is so easy to fall into the accepting of it and the positives that come from it – out of pure survival reasons because dwelling on the crap just makes it feel more crap – but we do need to wade through this crap and yell about it because otherwise it just sits within and festers. Because no matter how much we can try to pretend it’s not there, the fact is IT IS. And I can guarantee anyone with chronic fatigue is motherfucking ANGRY. It is a multifaceted experience, and this is one vital part of the experience too: all the bitching shit chronic fatigue brings. Yes there’s positives, yes there’s gratitude that can be found in this – believe me, I have found and continue to find a lot – but screw positivity and gratitude for a minute, this is my rant.

  • I hate the way one day I feel one way, and the next it’s completely bloody different.
  • I hate the way the sensitivities mean that the slightest, and I mean SLIGHTEST over-doing it, leads to a gut punch of symptoms as a honeymoon present.
  • I hate the way it seems to get better for a minute, or a day, or month, but then it’s leaps back with all its might, the following minute, day, or month.
  • I hate how chronic fatigue slaps logic in the face, bringing its only set of weird rules. Take exercise for example. NO it doesn’t make the tiredness better, it makes it (and the other symptoms) TEN TIMES WORSE. Who’s freakin’ idea was that?
  • I hate the way I never trust energy anymore. I hate the way I am actually terrified of it. I hate how fucked up that is. And I hate how long it has been like that too. I hate how this makes me feel like a shadow of my former self. This ‘hate’ is something I am really getting a healthy hold of, and changing though, so this feels like a bit of an old hate. I am slowly learning that energy is good, energy is healthy, energy does not necessarily mean ill-health whenever the energy is used up, or that even if it does, this is okay – the energy is here to be used. Not stuffed or abused or feared. I just motherfucking hate that this is even a lesson I have to learn. Since when did energy become something that was so evil or bad? Since 2009, when all this shit properly peaked, that’s when.
  • I hate how it’s such a ROLLERCOASTER, All. The. Time. I hate how plans instantly became something I feared, and continue to fear, because of this….there’s just no way of knowing how I’m going to feel.
  • I hate how I still get a craving to just go for a four hour jog or a day out adventuring, yet I know there’s no way this would actually be possible (YET). I secretly am actually really glad this is the case though because it means the energetic, spontaneous and adventurous part of me is still alive and always will be…even if I can’t physically follow through right now.
  • I HATE how undescribably shit the medical profession is. And how this ends up with me, still, doubting or judging myself for what is going on. If the doctors cannot find anything, then it must not be real? BULLSHIT.
  • I hate how judgmental people can be. And I hate how judgemental I am – about me and also about others who have it.
  • I hate how I make up some shitty excuse about losing my shoe so I can’t leave the house, or having to head home to feed the cat that I don’t even have, instead of just saying “I feel like utter shit…I’m about to fall over with exhaustion…I’ve got severe nausea, pain and aches…” to people in my life. Why? Because I hate how many times I have to say those last things. If it was once in a while then I would, but not every-fucking-day. Sometimes I make up excuses, sometimes I say what really is going on, but other times I just appear rude or lazy or a flake, or all three of those things, because I just don’t know what else to do. And y’know what? I’ve learnt to be okay with this, because I know the truth. I just have to trust that other people will or do too. Or at least won’t judge. And even if they do, fuck it.
  • I hate how suppressed anger is one of the route causes of all this but when I try to release this anger and ‘use it up’, I get so fucking tired! This is hilarious when it isn’t disheartening or debilitating.
  • I hate how ‘on it’ I have to be. I hate how I watch people just eat whatever the hell they want, miss a meal, stay up til 2am, and the rest. I try this from time to time, and I’m glad I still do, but the after effect is so fucking huge it makes these carefree moments such rarities. And almost not even worth it.
  • I hate that no matter how much I know this is real, I know this, all the talk of it ‘just being made up’ or in the heads of those with it, still makes me doubt myself. And I hate that this is why I hardly share this experience with anyone because I am just convinced that they will think this too. I hate how self-belief and a strength in my knowing seems to fly outta the window when it comes to this. Mother. Fucker.
  • I hate how there are a million more things to write on this list but I just can’t be bothered…and I just don’t know where to start.
  • And lastly, I hate how this list may take away from just how much I do and how incredibly bloody amazing I am at managing this all. But I don’t care. Because I really believe in the importance of yelling about the frustration of this maze, even if it isn’t all you want to say or it doesn’t really make sense, it does to you, so yell people, YELL.

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This hate list is about four or maybe six (it’s almost impossible to pinpoint the exact moment chronic fatigue actually begins, eh) years old. I could have written it at any moment over these years, and I wish I did. I wish I’d written a hundred of them, but I’m writing this now just to attempt to express a touch of this frustration. This dodgy named chronic fatigue has ebbed and flowed with its disguise. With the severity and the array of symptoms. And you know what? I hate this too. I hate that it is not just a consistent or constant thing. Maybe it would be easier to get a grip on it all? Maybe it would be easier to know just what works and what doesn’t, just what I can do and what I can’t? But I can’t. It doesn’t.

But actually, secretly, as someone who is almost allergic to the confinement of consistency (until now), I actually am SO glad of this crazy characteristic of chronic fatigue. As much as I can yell about how much I hate the motherfucking randomness of it, it actually brings a light of life to it. It’s like I get a kick out of the spontaneity of sickness…spontaneity is in my genes and so I guess I am relieved, in a weird way, that I can find inconsistency and most importantly, change, in this chronic fatigue game. Sure it might be easier to have it The Same for all these years, but hell that would freak me out. It would freak me out because I feel like at least if it’s not getting specifically better, it is changing. And change is development, growth and transition. Getting stuck is like the recipe for depression with something like chronic fatigue. And anything else at that matter.

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I’ve forgotten what it’s like to feel consistently healthy. I have got used to sitting in a group of people with a smiling face but a sense of desperate and raw crumbling inside. I trust that by saying no now, it means I can say yes in the future, when this shit has healed. I’ve learnt to not let the physical state I’m in, overwhelm and become everything. I’ve learnt that sometimes this is needed though. I’m resisting the urge to try to explain, and to just know that being myself in this moment is enough. In fact, it’s bloody wonderful. I’m bloody wonderful. We’re all bloody wonderful.

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7 thoughts on “Chronic Fatigue, I’ve got beef with you

  1. wow, it’s weird to see the thoughts inside my head written in a blog. I appreciate the time you took to share this. I appreciate the notion of “letting go and just going with what is.” In a world where it feels like no one understands, I realize that some people really do. Thx

  2. I can’t begin to tell you how heartening this blog is for me. I’ve suffered from Fibro for around 6 years now (& ME when I was 16) & physically, today started off so positively, before going downhill fast. It was then, I saw a link to this on twitter, and God, it was like you were inside my brain! There’s not a thing I disagreed with & while Fibro & CFS aren’t the same illness, I’m sure you’ll agree that the symptoms often overlap. So thank you. Thank you for voicing every single thought in my head, you have no idea how much it’s helped! Gentle hugs & many thanks xx

    • Oh wow, this comment made my day – thank you! I am so so glad this post helped. It’s funny really, I realise that there is ALL this stuff – emotions, feelings and experiences – when it comes to CF or Fibro that never get shared because I am so used to them! But I am realising that maybe that’s all the more reason they need to be shared! It’s like I have this big chunk of my life that is kinda secret, mainly because I haven’t known any other way. So thank you for helping me trust this is okay/safe/ESSENTIAL to get it out and have my word! If you want to keep in touch then I’d love it. As for fibro and CF overlapping – I am pretty sure that they do, and I have a feeling I have fibro symptoms too. Esp at the moment. How are you at the moment? Hoping you are feeling supported. Lots of love. xx

  3. i have chronic fatigue too, and have done since i contracted glandular fever (and therefore post viral fatigue etc) at 6! (i’m now 18). I hate how it saps the life and soul out of every moment, and makes everything that little bit harder than it has to be. I also hate how nobody ‘gets’ it. I was taken into hospital at 8 after nobody knew what was wrong with me, and eventually they just labelled it M.E./CFS after weeks of investigations. I’m now here 10 years later with the same problems and receiving the same “answers” from the doctors. Here if you need to talk 🙂 lots of love x

    • Hi love, thanks so much for this reply. And what a story too. Thanks so much for sharing and I am so sorry it’s been how it is – it makes me feel angry for you. I long for people around me to get it, and don’t even get me started on doctors, but what I’m starting to realise is (through the world of blogging) that actually there are people that get it. It just sometimes isn’t the ones you ‘want’ to get it. Does anything help things shift or ease? I just feel like chronic fatigue is a crappy name for what’s going on for me. It just feels like a label because there’s no real clear one thing, but beneath the label are a few key things, like liver stuff, etc. My CF has a route cause of trauma, particularly childhood, and so I am doing somatic experiencing which really can shift CF. and after three sessions I am noticing this is really true. Do your friends understand? Hope so! Big big love X

  4. I am 20 years old and this is year 5 of CFS. I am going to study something i’m not passionate about next year because I have to be realistic with myself. I hate what I love because it only reminds me of what I cannot do.

    I have not much care left for life but there are still people I love and I would never put them through the pain of taking my own life. Yet I hurt these people anyway because I try to act normal towards them until it exhausts me and then when I shy away they think it is there fault.

    I think one of the hardest things is facing religion. The majority of my town are christians and basically everyone I know but to believe in this God of love while in this affliction. I have to either not believe in Him or be very pissed off at Him. Keeping up the church act is killing me.

    Thank you so much for your post it meant allot to me that there are people that understand, people I can empathy with.

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