By | June 11, 2021

I am a student, I work for the town hall of my city at night, with children in “school failure”. In 2 weeks, Saturday, May 29th, we will have a party, a kind of carnival, where we will have parades, dancing and strolling through the streets of the city from 12 p.m. to 7 p.m.

Big problem: how should I do that? How can I run for more than 1 hour? I know from experience that it doesn’t make sense to tell my boss because I’m working with a friend who should have known since 2002 that I have SLE. She “forgot” however, and when it was about a month ago she asked me what was on my face (mask of the wolf) and I replied that it was lupus, she looked surprised that I was not with me she had spoken before. Thank you for being my friend, yupi (pseudo) friends are great!

So talk to the supervisor, even if I get along well so that he doesn’t understand anything: no thanks.

People generally consider me my father: in his opinion, I am healthy because: I get up in the morning, I shower, I eat, I have a social life. He doesn’t understand anything, although he has known about my health since 1996. For him and for many people since I found a normal platelet count after my spleen was removed: everything is fine, but we don’t know. The purpura was just one problem among many, the platelet problem today doesn’t make me a miracle lupus.

May 29th, I’ll be broken, KO, crumble, that fucking Saturday that is getting on my nerves because I know I won’t last longer than 1 hour, will sign my death warrant, oh yes that’s fine for the fact that it is unbearable, I can already see my back farting, limping, with my bones cracking everywhere, ohlala …!

I have a stick, I use it from time to time, but I’ve never used it before. I fear that my job and my skills for my health will be called into question, especially in June we will have a meeting to find out who is gone and who is going next year. I would be in the last year of BTS, a 2h / night job would be great, just to make money but also to move a bit, but when you realize how much I can be restricted in my movements, you might not want me anymore 🙁

It is unfair for the disease to be so misunderstood. I don’t even mention the fact that nobody knows, but those who do, like my dad or some of my friends, ignore it. You have nothing to jerk off! (This is not vulgar! It is completely realistic and therefore justified.

News and a sport to practice, even for us!

They say money is out of luck and it is true! I would like nothing more than to spend 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’ve spent the day moving in all directions, I’m exhausted,” how I would love to be tired and tired of doing things for the same reasons , and not dead “for nothing”!

I have no friends, no one to talk to, no conversation about trivial things like most girls my age, no girlfriends to talk to guys with, etc. I’m not bad, I’m not so bad that nobody wants me. So what? The girls I hung out with don’t want to go to school anymore because I’ve become too vigilant for the guys on the street since switching from 44 to 36 (and 60 mg corticosteroids / day to 2 mg). I “melted” and it bothers her: “You think you’re on the beach to put on a tank top?”, “You think where to put a dress?”. Honestly, if I wanted to hear such utterly derogatory and unnecessary comments, I’d rather be alone anyway. I would say that these are people to whom I explained my health problems six years ago and that apart from “and that’s it, it’s not like that!”, I don’t have anything else to do with it. Today they don’t even remember it.

Don’t you think it’s a little overused? lol it’s stupid and crazy to be turned down because we weigh 55kg while i was 75kg everyone liked me. My character has not changed so far, I am even more personable and open today.

I am ready to “lie”, basically not to shout “right” in public, people are stupid and suddenly feel ashamed of certain attitudes that I may have had, I have never complained to my people. But that doesn’t happen! I have to believe that I am not meant to befriend people!

If I don’t have friends, I have to look for a new job, something: cool, not tiring, which is at least interesting (at least for me). And I found! Quick no!

Have you seen the Decathlon advert for this new style of golf, street golf? I fell in love with 2 things: it’s colorful lol, and: you don’t have to bend down or fart back: just take the golf ball with the club: there’s a place for that, nickel for people like us lol.

It’s called “Ygolf”. I tested it and honestly found it fun, funny, and there are two clubs (2 to play with), 4 balls and a target / hole. It’s easy lol another good point, it can be transported without getting pierced. Play this in a big park with hills, in the early evening when it’s still a little warm but the sun is starting to go away: it’s super fun and relaxing. It’s a golf style to relax and laugh about, far removed from classic golf!

No superhuman strength required, the balls are not rigid, the clubs are light, the carrying case is practical. In short, I am happy that I can practice a fun sport: street golf, of course within the limits of my health!

I, who complained some time ago about not having a job, found one that replaces a lot of unnecessary things and fills my free time. If you have other ideas, just as tiring, I’ll listen to you 🙂

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