How To: Live With CFS. Part Three.

Do you know those days, where you wake up, and your body and mind don’t feel right. Your mind feels fuzzy, your eyesight is blurry, your body feels like it cought a virus and it’s just starting to battle it, muscles ache, dizzyness kicks in, you’re not sure if you’re hungry or not.
For me. That’s a good day.

I spent most of my time and space on this blog/my facebook/my instagram talking about how wonderful life is, and I post a lot photos of the many fun things I do. But the truth is. Life isn’t always wonderful, and I only spent 20% of my time feeling good enough to do fun things.
Since I choose to focus my online life on the positive things and I spent most of my private/social life smiling my troubles away, it’s sometimes hard for people to realise that I am actually sick. I’ve had people tell me in real life “but you had a picknick, you didn’t look sick then, how can you not work more”. And I’ve heard from people that there has been talk like this behind my back as well. (“She went to Egypt, but she can’t work full days?! bollocks!” etc etc)
To the people asking me directly I say, “Thank you for asking, let me explain”. To the people talking like this behind my back I say, “up yours”.

I don’t like pointing out the fact that I’m sick, because let’s be honest, it’s no fun to talk about! But I do feel that it is necessary that I talk about it more, both in my personal and my online life. To make people understand that you can be sick, and still have a fun.

It feels like there should be a picture or something here, as a pauze to the heavy writing. But unfortunately I don’t have any good ones, so let’s just move on shall we?! 😉

It’s hard to tell people how I feel, if they haven’t experienced it them selves. I usually compare it to having the flue with a pretty high fever, cause that covers most of the things. But having a fever usually doesn’t last as long and there’s usually no real risk of losing your job and all those things, so you’re not really covering the emotional side of things. But in general, it’s a pretty good description.

To keep it a little simple, I have tried to narrow my symptoms down to three types of days. Bad ones, okay ones, and good ones. There’s no telling how any day will be, it’s usually a surprise in the morning, haha. I haven’t found the right balance in life to be able to predict how a day will be. Allthough I have to say, I am getting much better at it, with the help of my therapy.

A Bad Day
Oi, these days suck so much. I guess it’s like the flue, with high fever, combined with a stomach bug and heavy migraines?! Something like that.
Everything hurts, everything is stiff, you can’t focus on anything you’re doing, you’re too nauseated to eat anything, your head is constantly throbbing with pain. Basically all I do these days is cuddle my kitties and try to watch some movies or tv. But since I can’t really focus on anything, or remember what I’m doing, even that can be too much. Walking to the toilet? Feels like a marathon. Holding up my glass? Feels like lifting heavy weights. Making dinner? Hahahaha, bitch please.
I am lucky that these are my bad days, there are people out there for which this is an okay, or even a good day. But still. These days suck so much. Especially when they come out of the blue and you have to cancel any and all plans that you made. As you can probably guess, working is not an option on a bad day.

An Okay Day
A day where it takes me a loooonggg time to get started. Muscles ache, mind is blurry, focus is limited. After taking my time to wake up, to get dressed, and to eat something. I am able to do things like buy a few groceries, clean my house a little, or meet up with a friend for some fun, but relaxing good times. All these things I can do for a short period of time, after which I need a long resting period. Cleaning my house I try to do in little cleaning sessions. So I clean two walls and the floor in my bathroom, I rest for a few hours, I clean the rest of my bathroom. Stuff like that. Buying groceries or meeting up with a friend are pretty big things, I’ll need the rest of the day to rest/bum around/watch tv/play pokemon.
These are my most common days. When I work, which was around three hours a day before the summer holidays. This would be all I would do in a day. Sometimes I would have energy to make an easy dinner, most days I heat up leftovers.
I force myself to do more than I’m capable off on these days, especially when I already had plans with friends. I won’t cancel them. If I worked and needed some groceries, I would go to the shop even though work had absolutely drained me. I’ll force my body and mind to keep going even though I’m exhausted. This is bad. I should stop doing this, cause they create more bad days. It’s stupid things I do like this which is why I need a therapist to help me balance things out, haha.

A Good Day
My mind feels more clear, my muscles ache a little less. And I am able to be up and dressed relatively quickly (from bed to breakfast would still take about an hour or so, first relaxing and stretching my muscles in bed). The beginning of my summer holidays were days like these. I could go out of the house and have fun with friends. If the fun does not include a lot of walking or travelling. But a picknick, a lunch date, the zoo in a wheelchair, all possible and I can even enjoy them. These days make me feel normal again, and I love them so much. My problem is, I do too much in these good days. I enjoy them so much, that I use up all the energy I have. Which is why a couple of good days, are usually followed by a couple of bad days. Part of my therapy is to help me limit the things I do on my good days, so I can have more of them, haha. But when you finally feel a little normal again around your friends, it’s hard to not do everything you wanted to do on the bad and okay days. Working is awesome these days, cause I can have fun with colleagues as well as work with the children. I even have time to buy some groceries or clean my house before or after work. Ah yes, the good days ❤

So. There you have it. This is how CFS feels for me. Sort of. The days can overlap each other of course, what starts as a bad day, can end as an okay day, and vice versa. When I’m on holiday, and you see all the wonderfull photos on my facebook or instagram, I still have bad days, I just smile for the camera. Keep that in mind next time you judge me, or anyone else, for having fun while living with a chronic illness.
My amount of bad days (2/7) is shrinking, my amount of okay days (4/7) is growing, and my good days (1/7)… aahhh, I love my good days ❤
Like I said before, my therapy is helping me a lot to balance things out, and to create more okay and good days, while also helping me to handle my bad days. I feel lucky to finally have found the right team of people to help me deal with all of this. So hopefully some day, all my days will be good days again.

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11 thoughts on “How To: Live With CFS. Part Three.

  1. So so proud of my little sis!
    Yesterday I spontaneously decided to help her make the hard days a bit more comfortable:

    A NEW COUCH!
    (Trust me, you don’t want to lay on the one she has now for a day)

    Donations are already at 100 euro’s now, so that’s great!
    If anyone wants to help out, please contact me at rebekkamell@gmail.com

    PS: Her dream couch is from ikea, so that shouldn't be to hard to reach right?! 😉

  2. I just read alllllll of your stories from start to end and wow, indeed, I didn’t realise how hard it was :/ But you are right, I hope you will somehow find your balance by listening to your body and doing what you can and being strong like you already are… You’re smart! And you will definitely one day get your happy ending, I’m sure. In the mean time I wish you all the best and hope you get to have your normal life as soon as possible while having an as-easy-as-possible road to get there. Dreams, I know, but I am sending it your way 😉 Hopefully if we all wish really hard it will happen.
    Oh and of COURSE you want to post the fun things and smile and take those nice pictures… I sort of know the feeling, I did the same thing. Sort of. First on my [locked] LJ I would only post the bad things because on my other [open] journal I wouldn’t post those. And then my LJ became more public and I was like “I’m just going to force myself to forget about the bad things by only posting good things” but it kinda just meant I never posted :’D
    I know you’re not doing that, but I am kinda just saying like you, I had to find a balance. I do think posting a lot of positive things like you are doing, count your blessings, photos, etc, is really helpful and will make you really happy with your blog later in your life. But like you said, your illness is part of your life and you have every right to be honest about it! The good people will understand. The people who gossip behind your back… pssshhhhh to them! And the people who follow you and read regularly will not be put off if you post about it, and actually it helps understanding better. But after all, it’s your life and you should do what you want! bla bla bla bla I talk too much.

    Either way, I’m super impressed by how you’re talking about it and how you’re tackling things this time, I really really hope they work out sooner rather than later, it’s already nice that you can work again, even for just the amount you can… So yeah. Beterschap lieve Annika!! ❤

  3. Ik vind het zo wonderbaarlijk goed hoe je het omschrijft! Het gepraat achter de rug om is mij ook zo bekend. ‘maar je was op een feestje, dus dan gaat het toch goed?’ mensen kunnen zich niet indenken dat je leven niet zo is als dat van hen. het blijft moeilijk.
    Het onderschatte stuk van het ziek zijn is ook het altijd moeten afzeggen van afspraken. Daar komt zoveel schuld ook weer bij kijken en een soort stress ‘als ik maar niet weer te ziek ben om met die af te spreken’ wat er natuurlijk voor zorgt dat je door de stress weer zieker word 😦 Het blijft een raar ding, dat ziek zijn 😦

    Je hebt de verschillende dagen perfect omschreven, zo herkenbaar. ik hoop dat de nare dagen afnemen en steeds beter worden. (ookal lijkt vandaag als een bad day te beginnen) Als ik ooit iets voor je kan doen, je ergens naar toe rijden of iets voor je halen, boodschappen doen, weet ik veel wat! Laat het me weten, want ik doe het zo!<3
    xx

    1. Ow en wat ik me afvroeg, heb jij ook dat alles wat je op de slechte dagen doet, qua films kijken of boeken lezen, datje dat vergeet? Ik kan me zo vaak herinneren dat ik een film gezien heb, maar wanneer ik hem dan nog een keer kijk, weet ik er niets meer van. 😦 Dat slechte geheugen, af en toe heel vervelend (af en toe ook heel praktisch!)

      1. Je bent lief ❤
        en het dingen moeten afzeggen is idd zo naar en stressvol, en hoe goed je het ook probeert duidelijk te maken of het goed te doen, je doet het hoe dan ook altijd fout in de ogen van degene bij wie je iets afzegt -_-

        En ja, heb ik ook! Dat ik hele films vergeet, en series opnieuw moet kijken om te begrijpen waar t over gaat idd! Dat geheugen… Zo irritant!!!

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