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I think about making a Facebook group for (rather young) people with chronic illnesses like fibro. 

The idea is that we all know those days when you want to rant or talk to someone about all those difficulties, but on tumblr it is hard to answer and interact without spamming and the ask/submission section isn’t that handy.

 I’ve been on other FB-pages and groups, but to be honest, a lot of the people there are a lot older than myself. 
I wouldn’t “ban” people who are older, if they feel like they belong there, they’re welcome as well, it’s just that I want to focus on people like I find here on tumblr…

What do you say? Feel free to answer or contact me via my ask ^^

personal rant/whiny post ahead

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Fibro-Fog is NOT when you left your keys/money/documents at home

Fibro-Fog is NOT when you forget names of friends you’ve known for years

Fibro-Fog is NOT when you have to read a sentence several times because you can’t focus enough for it to make sense

Fibro-Fog is NOT when you have to make notes during a conversation because you know you will be forgetting your thoughts in about 5 minutes

Fibro-Fog is NOT when you walk into a room, forgot why you went there, go back, remember it, then walk into to the wrong room again.

Fibro-Fog is NOT thinking about a sentence for 10 minutes because you know what you want to say, you just can’t put the words into the right order

Fibro-Fog is NOT thinking of a word, saying another

Fibro-Fog is NOT forgetting mid-sentence, what you actually wanted to say

Fibro-Fog is not having experienced anything of the above, BUT experiencing a lot of these during a single day. 

(EDIT)

Everybody has  a bad day sometimes, can’t recall numbers or forgets something. But Fibro-fog is different. It is much more intense, and appears much more often. Losing part of your mental ability for a certain amount of time can be very tough, and people who suffer from this need your patience and understanding.

leoncillo:

I wake up: “Wooo I’m unstoppable! I have so much energy!”

An hour later: 

I’m asking myself this constantly.

I mean, I can’t hide that I’m sick, I can’t hide that I sometimes feel like shit and I sure can’t hide that I’m not abled to do, what others do.

Since my latest “flare” (fibro’s been pretty silent for about 2 years and is now showing up again), I see how many of my friends forgot or even never knew that I’m sick.

I constantly feel the urge to excuse myself for my behaviour/for not being abled to do certain things. And I actually just don’t want to!

It’s just that a lot of my “friends” just don’t seem to inform themselves. It’s a bit like they don’t take it too seriously, that’s why they don’t need to. 

But then, instead of showing them what my life is really about, it just looks like I’m exaggerating things. And that’s not what I want… 

I fear some of them might think I’m just constantly crying for pity, but actually I HATE being pitied. But I also hate being treated like I just act like a whiny pussy. Cause I’m not. 

 It’s this kind of dilemma I just can’t think a way out of.

Maybe I just forget the one’s that don’t get it. They can kiss my ass. 

I’m sick of having “friends” I can’t talk to or who do not talk to me. I don’t need anybody in my life who doesn’t think I’m important, or who I regard as important.

I don’t have the energy to make people like me. You like me, or you don’t. if you don’t, just jog on!

When you’re diagnosed with an illness that’s not curable, when you’re told that you will spend the rest of your life being ill, never again being abled to do what others do on a regular basis..

everybody expects you to be strong. All the time we see these pictures of happy people, people living happily with their illness. Nobody wants to see pictures of somebody crying in a wheelchair. Nobody wants to see people lying in bed being in pain.

But what about the people who are not strong? Who do not smile all the time, because of their pain and fear and despair?

Nobody is happy all the time, especially not those, who have to deal with pain daily.

Most people don’t understand what daily pain can do to people. It doesn’t even have to be THAT painful to torture you.

And they definitely don’t know how much luck they have to be healthy.

We see people throw away their bodies and their health ALL THE TIME. Just because they don’t know how it feels to be sick for the rest of your life. These are sometimes the same people that judge you for feeling bad about being ill.

But we, we definitely don’t WANT to be sick. We don’t want to feel that way and if there was a way to be happier- damn right we would want to!

Sometimes I’m happy and joyful, despite the way my body feels. Because my body is me, but I am not my body! Sometimes some of us think about breaking down this connection, but I won’t.

Still sometimes we are weak. We cry, we whine and we moan.

But.. who are you to judge us? Most of the times we are much stronger than most people need to be at any time in their lives.