Posts Tagged ‘ehlers danlos syndrome’

Did I tell you all that I lost fifteen percent of my body weight last semester within three months?  Did I forget about that?  No…  No, I briefly mentioned losing weight, but I didn’t mention how much.  Twenty two pounds.  That’s how much.

You know, when I tell people about this, it doesn’t matter how negative my tone is or how upset I look–they congratulate me.  When I explain that it was stress and Ehlers Danlos Syndrome related, they still congratulate me.  When I say that I have never felt more weak and more tired in my life, that I’m blacking out more and not able to finish what I need to for uni, they keep on congratulating me.

There’s a major problem when health is pushed aside in favour of lost weight.  My weight has become more important and worthy than my own wellness, and it sickens me that shape is valued over substance.  I’m chronically ill with EDS, most likely POTS (I’m getting tested this summer), and now mono for the past two months.  I just can’t get well, and I’m dropping weight again, even though I’m already right at the line of having an underweight BMI.  And yet, I’ve never been told more in the past few months just how good I look.

I feel like I’m dying.  I need to be sleeping over twelve hours per day.  I am dizzy.  Tired.  Weak.  In pain.  Scared.  And I’m told that I look beautiful.  It doesn’t make any sense at all.

I guess that all I’m trying to say is that, you can compliment my looks all you please, but if I tell you that I am unhappy about losing weight because I’m slowly succumbing to some terrible diseases, please don’t tell me that my looks are more important.  I would gain back all of that weight and be pudgy again if it meant that I felt well.  I’d gain even more to feel like I wasn’t some elderly folk inside of a twenty year-old’s body.


I’ve spent a lot of the past month spiralling into another depression from health.  It’s caused me to re-evaluate a lot of my life, change future plans, and start doing some things for me.  I’m tired and upset and causing permanent damage to my body, so I’m taking a year off after I graduate from uni so that I can get an internship and then travel before starting grad school.  I’ve dropped tumblr recently since I think that an hiatus will help me focus more on my health and course work.  I’ve stopped trying in some of my classes. I haven’t turned in online French homework in a month, and I don’t even care any more.  I’ll have to find some time this week to finish it amongst all of the other things, but I just…  I don’t fucking care.  There’s so much else in my life right now.

This is so rambly.  Es tut mir Leid.

Last time that I spoke with you all, I was writing about my grandma.  I still think about her so much, but things get better with time.  They always do, emotionally speaking.  And I mentioned a few things about losing and gaining people.  December…  Well, I got a boy-friend.  Which sounds like I caught a Pokemon or something, but I assure you that’s not quite the case.  Our story will probably be better saved for another time, but at least I’ve finally mentioned it (only four and an half months later, tralalala).

No really.  This has just about been the shittiest post I think I’ve ever made on this blog.  But call it free-writing.  Train of thought.  Just some things that I need to get out.  I listened to Miho Fukuhara’s “Let It Out” one too many times this morning; blame that.

Anyway, this summer, I plan on getting better.  Lots of rest, working three days per week until I feel a little more human, seeing doctors to get diagnosis and help, going to Florida to visit family.  That sort of stuff.  I’m looking forward to the end of the semester so incredibly much.  Sleep.  It’s all I need and all I want.  Just sleep.


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Seriously, the amount of spam I get is absolutely ridiculous.  Thank everything that WordPress lets me weed through the comments rather than automatically post everything.  I’d off myself otherwise.

Meanwhile…  It’s a bad joint day, which means that I’m still in bed watching Doctor Who, reading Wikipedia articles, and installing an old version of Oregon Trail onto my laptop.  Somehow, the hours keep slipping by faster and faster until I’m left here with barely a meal eaten and wondering what happened to my morning.  I slept in late until nine, but I still had some morning, didn’t I?  What on Earth happened to it?

I’ve been waiting around for a thunderstorm to roll on by, but it’s done just that: rolled on by without stopping.  Instead, the sun has poked back out from the angry clouds to greet me, but I don’t want that.  I really need some rain, even if it will make my knees buckle all the worse and force me to wear wrist braces yet again.  It’s days like these when it becomes more apparent that my body is falling to ruin.  I may be exercising and feeling so strong, but it can crumble in a split second.

But it does give me some more time to just sit and relax, even if there is some pain involved.  I’ve been watching old episodes of Doctor Who, which really makes me further enjoy the series.  There’s this thing that bugs me with most shows–the characters just don’t die.  Now, I’m not talking about The Doctor, because he’s immortal or whatever, but other characters.  In most shows, the good guy always has to go back and somehow save the other characters to make everything a happy ending.  It means that the main characters nearly get killed, but then everything magically works together.  Well, I don’t like that.  Call me a pessimist, but life isn’t like that.  People die.  People stuff up.  People don’t always live to see the world fall back into place.  It’s for this reason that I’ve come to appreciate Doctor Who as more than just an entertaining series.  Not every character lives.  People sacrifice themselves, repent, get punished.  They don’t just stand there and wait to have everything saved, and I enjoy seeing this realism.  Sure, I don’t enjoy death, but it’s comforting in a way to not have to watch The Doctor and Rose run all around trying to save everyone.  People are more independent in this show, I think.  And it shows when they make their decisions to allow death.  But the loss of life in the episodes shows realism, which is what really matters.

I am a realist after all.  Pessimism and optimism have never quite worked out for me.

But I thought I’d ramble about that for you, because it really is something that I enjoy about the show.  That rational, level-headedness that comes with not trying to appease the world but merely keep it stable.

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