How to: Live With CFS. All the bad feels.

I think it’s pretty clear by now that I am trying to learn to accept and live with the fact that I have a chronic illness. And I’m doing pretty well with it, if I do say so myself.
But there is still so much frustration. Things I do without realizing, things I say without thinking clearly, things I need to do but don’t want to, things I can’t do but want to. Not to mention the way some people talk to- or about me. And then there’s things I read online, or hear people say, and what-not.
Sooooo many things can trigger sooooo many frustrations when you’re sick all the time.

So. Let’s handle this like adults. And just vent frustration by ranting on my personal online blog. Cause that’s what grown-ups do nowadays right?!

(NOTE: imagine I’m handing you a big pile of ‘grains of salt’ right about now. Got them placed firmly in your mind?! Yeah?! Okay, go on and read the rest of this, you’re ready)

“Yeah well, we’re all tired sometimes”
Ah yes. This one usually happens behind my back. Next time you hear someone say this about CFS or about a person with CFS. Feel free to slap that person in the face. Hard. With a chair. And then kick them when they’re down. Thanks a bunch.

“Oh yeah, I had a weekend once where I was super tired as well! That sucked as well!”
Thanks for relating to me. Being tired for ONE FRICKIN WEEKEND (because you had too much fun partying the week before) is TOTALLY the same as feeling chronic fatigue, muscle aches, lack of concentration, dizziness, memory loss and headaches for the past couple of years. You probably lost your dream job as well because of that weekend, right? Yeah. We are like soul mates now. Omg lets be bff’s and do the whole half-heart necklace thing. Like for real.

“Oh yeah, I had mono so I can definitely do that whole BFF necklace thing with you!”
(mono is ‘ziekte van Pfeiffer’ for any dutchies reading this)

Yeah, I do think having mono comes pretty close to knowing what CFS feels like actually?! But there is still a big difference between having a disease the whole world knows and accepts, and having something that not even most doctors know how to deal with. So, no sorry. No BFF necklace for you.

“BOOHOO I’ve had a cold for two days, and nobody comes to help me make food or anything!”
You’ve got the frickin’ sniffles. Buck up and make your own damn food.

But wait, I saw you smile once, how on earth can you really be so sick that you can’t work?!
UUUUUUUUUUUUGGGGGGGGGGGHHHHHHHHHHHHHHHHHHH

So, you can go to a concert/the zoo/museum/shopping (in a wheelchair), but you can’t work?! BALLONY!!!
UUUUUUGGGGHHHHHHHHHHHHHHH.
Yeah okay. This I can kinda understand if you’ve never been sick for more than two weeks in your whole life, or have no empathic abilities whatsoever, so I’m gonna give it a response.
You know that feeling, when you’ve been home sick for a couple of days, and you’re not yet recovered. But you’re sooooo bored of being home –alone- all the time. You’re sooooo tired of feeling sick and doing nothing all day, yet you’re not yet psychically capable of doing anything other than staying in, watching TV/reading a book/playing pokemon while your body recovers from the illness? My whole life right now is basically that feeling. So yeah, I push my body to its limits by trying out things that come close to an actual normal life every once in a while. Sue me.
Oh and beliiiiieeeve me, I always feels about ten times worse the day after I do something like that. I’m well aware that I really shouldn’t do these things. But the mind wants to be happy and feel normal every once in a while. So there.

Why me, universe, why meeeeeeeeeeeee?
Oh yup. This happens. A LOT.
Cause “Wasn’t I a nice person?”
And “Didn’t I always try my hardest in school and at my job?”
Also “What on earth did I do to deserve this illness?”
Let’s not forget “What did I do to deserve all this hardship in my life?”
(cue tears and need for Kleenex and whatnot)
Buck up Annika, you’re dealt this hand. Frickin’ deal with it already.
(cue more tears and running out of Kleenex)
No okay, yeah, no, that was harsh of me. Just… yuck. If I give you another Kleenex will you please stop crying on my shirt?! Thanks.

Being alone. A lot.
Apparently so much so, that I write conversations with myself on my online personal blog. Go me.

Also cats. I think I’ve got like a secret human-cat language with my kitties by now. We get each other, that’s for sure.

People asking me to do fun things/planning too many activities in a week
Uuugghhh all the pressure, all the feels! Being ill can be overwhelming a lot of the time. And it’s especially hard, since I don’t really know where my boundaries are psychically, because they vary from day to day. So this is actually a serious issue for me. I sometimes plan activities which are waaaaayyyy to much for me. Like a concert, a day of shopping with or without my wheelchair, a walk in a forest, etc.
If I do these fun things, I will be extremely tired and in pain for a couple of days after. But cancelling plans is very hard and makes me sad, cause I want to be able to do these fun things and not worry about being ill 24/7. So I have to choose between feeling like crap cause I did too much, or feeling like crap because I cancelled something fun and now all my friends hate me. Cause that’s obviously what people will think of me when I cancel. Makes total sense.

Asking me to hang out all the time
Yes, it’s true, I don’t have any work at the moment, and I have a lot of free time on my hands. And I’m home alone a lot. But I’m also trying to deal with living with a chronic illness, I don’t have the time or the energy to hang out, play Mario Kart or watch crappy comedy with people all the time. Not to mention all the therapy and doctor’s appointments that take up most of my days. And if you do want to hang out, at least call me to see if now is an okay time or something.

Not asking me to hang out all the time
I’m ill, not dead, hanging out would be frickin’ awesome! I’m home alone all frickin’ day. I don’t want all my days to consist of only therapy and doctor appointments. Come play Mario Kart or watch crappy comedy. Please. Just, come by any day, I’m always home, a surprise visit would make me so happy. Please join me on my couch. Plleeeeaaaaassseeeeeee.

Confusing my friends with inconsistent advice
Yup.

Facebook/instagram/tumblr/wordpress/actual conversations with actual people about their life
‘Cause there ain’t nothing better than seeing people out running/walking/biking/hiking/road tripping/traveling while you’re home alone feeling like a big pile of crap. No really. It’s just mega awesome and doesn’t make me feel extremely jealous of every one elses life at all.

Legal Shit.
Yeah, CFS is about the shittiest of diagnoses when it comes to legal shit. And this is too much to put in this blogpost. I’ll have to get back to you on this.

Aaaaah yessss. Feels much better now.
Good.
Time for tea. ❤

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7 thoughts on “How to: Live With CFS. All the bad feels.

  1. Ohhh wat is het fijn dit te lezen en om je eens te horen ‘klagen’ hierover! Ik zou het zo geschreven kunnen hebben! Chronisch ziek zijn is/voelt voor iedereen anders, maar de reacties van gezonde mensen en de (stomme) dingen die je meemaakt is bij iedere zieke gelijk heb ik het idee. En om mijn comment af te sluiten: ❤ ❤ ❤

  2. ❤ ❤ ❤ heel erg herkenbaar, vooral dat je 1 keer iets leuks doet en dat mensen meteen denken dat je weer alles zou kunnen oid, echt blwwruuugggh! mensen kunnen er gewoon niet bij, proberen het voor zichzelf te vergelijken, maar hebben niet door dat het totaal niet overeenkomt. En toch heb ik de angst dat ik dat zelf ook doe.
    Waar ik het meeste een hekel aan heb is alle scheve ogen, want mensen zien de dingen die je wel doet en niet de dingen die je niet doet. Alles wat moet je moet laten, alle crap gevoelens die erbij komen als je moet afzeggen of weet dat je dingen niet moet doen.

    Ik vind het geweldig hoe jij toch nog leuke dingen blijft doen, ondanks dat het slopend is, het blijft een prijs die je betaald. Maar ik vind je zo ontzettend knap en sterk, ookal voelt het voor jou misschien niet zo.
    En ik vind je nog stoerder omdat je er hier gewoon openlijk over praat ❤ openbaar alle kut dingen zetten, op een heldere, ware en toch grappige manier geschreven. Ik zou willen dat iedereen dit leest en er ooit een beetje begrip zou komen.
    ❤ ❤ ❤

  3. Hee. Ik herken een heleboel. Ik heb geen diafnose en bij mij zit het wss allemaal tussen mijn oren maar altijd moe zijn, overal spierpijn hebben, duizelig en slap zijn, wazig zien en vervolgens gezellig voor de klas staan.. terrible! Durf er ook geen melding van te maken omdat het in mijn geval wss mentaal is. Maar toch. Voor mensen als wij, vol levenslust, dingen willen meemaken, is het zo zwaar en belemmerend dat het lichaam ons tegenhoudt. Bahbahbah. En die mensen die er zo luchtig over doen lekker laten kletsen. Een beetje moe zijn is niet te vergelijken met je als een 80jarige in een jong lichaam voelen. Sterkte en knufffff.

  4. En misschien doe ik nu nog vervelender en ga ik mezelf vergelijken met jou terwijl het niet te vergelijken is! Maar zo is het niet bedoeld. Ik herken iig de wanhoop en frustratie.. X

  5. Héél herkenbaar, haha helaas zou ik bijna zeggen, het zijn de dingen waar ik ook tegen aanloop en hoewel ik ook de diagnose CVS/me heb gekregen twee jaar geleden schiet je er zo weinig mee op. Ik werk in een ziekenhuis en nu al drie jaar bezig om te proberen te reïntegreren met nauwelijks resultaat. Het verliezen van mijn werk hoewel ik niet ontslagen (vervangende werkzaamheden) ben vind ik één van de ergste dingen. Mijn liefde voor katten en tv series maakt het draagelijk zo’n dag door te komen en me te focussen op de leuke dingen, waaronder ook het lezen van blogs;)

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