I am a student, I work at night for the town hall of my city, with kids in "school failure". In 2 weeks, Saturday, May 29, we have a party, a kind of carnival, where we are supposed to parade, dance, walk in the streets of the city, from 12h to 19h.
Big problem: how am I going to do? How can I keep more than 1 hour to walk? From experience, I know it's useless to talk to my boss, because I work with one of my friends, who was supposed to know since 2002, when I told him about it, that I suffer from an LED. However, she "forgot" it, and when it was about a month ago she asked me what I had in the face (mask of the wolf), and that I replied that it was a lupus, she looked surprised that I did not speak to her before. Thank you for being my friend, it's great (pseudo) yupi friends!
So talk to the superior, even if I get along well, so that he understands nothing: no thank you.
People in general react to me as my father: According to him, I am in good health because: I get up in the morning, I shower, I feed myself, I have a social life. He does not understand anything, although he has been aware of my state of health since 1996. For him and for many people, since I found a normal platelet count following my removal of the spleen : all is fine But we know that no. The purpura was just one problem among many others, the e having platelet today, does not make me a miracle lupus.
May 29, I'm going to be broken, KO, crumbling, this fucking shit Saturday that's already getting on my nerves, because I know I'm not going to hold more than 1h, will sign my death sentence, oh yes it's going to be unsustainable, I can already see the back farting, limping, with my bones that will crack everywhere, ohlala...!
I have a cane, I use it from time to time, but I have never used it before them. I am afraid that my position and my skills will be challenged with respect to my health, especially that in June, we will have a meeting to find out who is left, and who will leave next year. I would be in my last year of BTS, a job of 2h / evening would be top, just to make me money but move a little too, but if they realize how much I can be limited in my movements, they may not want me anymore :(
It is unfair that the disease is so misunderstood. I do not even mention the fact that no one knows it, but those who know it, like my father for example, or some of my friends, ignore it. They have nothing to wank! (It's not vulgar! It's totally realistic, and therefore justified.
News and a sport to practice, even for us!
It is said that money is not happiness and it is true! Nothing would make me happier than spending a whole day in good health: by that I mean without pain or fatigue. It happens to me from time to time, but it's so rare! Once or twice a year...
Ahh when I hear some people say: "I'm tired, I spent the day to move in all directions, I'm exhausted", how I would like to be tired too for the same reasons and tired for doing things, and not dead "for nothing"!
I have no friends, no one to talk to, talk about futile things like most girls of my age, no girlfriends with whom to talk to dudes etc. I'm not bad, I'm not so bad that nobody wants me. So what? The girls I was hanging out with do not want to go to school anymore because I have become too much of a watcher for the guys on the street, since I went from a 44 to a 36 (and 60mg of corticoids / day, at 2mg). I've "melted", and it bothers them: "Do you think you're at the beach to put on a tank top?", "Do you believe where to put a dress?". Frankly, if it is to hear such comments completely derogatory and useless, I still prefer to stay alone. I would say that it's people to whom I explained my health problems six years ago, and that except "and that's it, it's nothing like that!", I'm entitled to nothing other. Today, they do not even remember it.
You do not find that a little bit abused? lol it's stupid and foolish to be rejected because we're 55kg, whereas when I was 75kg, everyone liked me. My character has not changed so far, I am even more friendly and open today.
I'm ready to "lie", basically not to shout, to walk "properly" in public, people are stupid and suddenly are embarrassed by some attitudes that I could have , I never complained to my friends. But it does not happen! I must believe that I am not made to befriend people!
If I can not have friends, I must find myself a new occupation, something: cool, not tiring, which is an interesting minimum (at least for me). And I found! Fast no!
Did you see the ad for this new style of golf, the street golf, made in Decathlon? I cracked for 2 things: it's colorful lol, and: no need to bend down, nor farting back : just take golf ball with the club: there's a place provided for this purpose, nickel for people like us lol.
It's called "Ygolf". I tested, and I honestly found it fun, fun, and there are two clubs (to play 2), 4 balls, and a target / hole. It is light lol other good point, it is transported without being burst so far. Play this, in a large park with hills, in the early evening when it is always a bit warm, but the sun starts to leave: it is super nice and relaxing. It is a style of golf made to relax and laugh, very far from the classic golf!
No need for superhuman strength, the balls are not rigid, the clubs are light, the carrying bag is practical. In short, I am happy, I will be able to practice a funny sport: street golf, within the limits of my state of health of course!
I who complained a while ago of not having an occupation, I found one, which replaces a lot of useless things, and which fills my free time. If you have other ideas, just as tiring, I listen to you :-)
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