Being ‘sick’ is a really difficult thing to get your head around. I don’t mean when you get sick, I mean living sick. It’s especially difficult when your family is either aggressively disbelieving or completely apathetic. You start to question everything you know about yourself and your life; whether you’ve been too easy on yourself, too weak, a hypochondriac, lazy…the list goes on, and on. I vaguely know one person outside of my family (yes, the same ones who don’t believe in it) who has EDS, and when you’ve spent your entire life trying to cover up and hide what you thought were embarrassing or unseemly traits, it’s difficult to ask for help.
I try to keep away from others in forums and whatnot who have similar situations to mine, for the same reason my family doesn’t want to hear about it: it’s an endless cycle of self-pity, irrational rants most likely due to medication or other issues, and an unwillingness to try overall. But mostly, it’s a community that will not be there when you do try to get better, or you try to get on with your day – then you lose that community. People are trying to make each other and themselves feel better, and there’s nothing wrong with that, but it’s not necessary to create an ‘other-ism’ of anyone who isn’t sick, or is on a different level than you, or is just trying to move on with their lives.
I don’t want to sit around all day complaining about why I have it tough and how the system is keeping me down, and never try. I have goals, dreams, aspirations, and they tower over most people’s, and I don’t think I should have a free ride because my body is essentially faulty – I want it to be the reason I succeed over what I could have potentially become. I’m already out of the ordinary, so I might as well make it in a positive way.
There are so many motivational voices online and in general at the moment, and I tend to agree with them: if you want to do better, you have to be better. You have to get up at 4am. You have to work your buns off. You have to get over your insecurities and your fears and you have to go for it, carpe diem and all that.
But what happens when all of that is your daily reality? The other day was unusual for me; I woke up at 5am and had enough time and energy to do my very light rehab exercises for the first time in three weeks, played with my puppy, uploaded a selfie for once, went to the library to study and ate healthily and cheaply – all before 9am. I felt fantastic. I never thought I’d love being up early! I’m so organised! I’ve done my makeup and styled my freshly washed hair! I can get so many things done today, starting with the three assignments I haven’t really started, due this week.
At 10am, I was done. I’d completely run out of steam one hour into a normal work day for most people, so I took advantage of the buffering-every-30-seconds internet and caught up on Game of Thrones…and then started typing this.
My reality right now is that I’m finishing a Bachelor degree I haven’t been able to do until my mid-twenties, living in my fiance’s parents house unable to move out because we’re not sure if we’ll have to move soon for said-fiance’s work, and we can’t afford it. I have no savings or belongings, apart from my laptop, some clothes and makeup, and I definitely won’t be able to attend one of my oldest and best friend’s wedding this year. My body has started rapidly deteriorating in the past two years, but my health insurance doesn’t want to cover the appointments or aids I need until I get an official diagnosis, which I can’t get for at least another month. I go to a library or uni every day, from morning until night, so that I can try and study outside of the house and be productive. All while trying to stay as healthy as possible, trying to design ways to get out of my current situation and to plan a wedding and family when we can afford it, as well as to try garner at least some financial security for said decisions. I can’t get a job at the moment because I never know when I’ll be able to do anything, and I’m due to have surgery which has a huge recovery time. Who wants to hire someone who goes above and beyond for three weeks, then crashes for two? Who has brain fog and is so clumsy or stiff that they can’t write or type – all at unforeseen times?
I want to have as normal a life as I possibly can – scratch that, I want to have the BEST life. Better than normal, better than most – because I have to. I refuse to live my life as a daily struggle. I don’t want to not be able to pick up my future kids or end up in a wheelchair. I want to climb mountains and swim oceans and cook dinner for my friends and family without having to sit on a chair while I get someone else to cut vegetables, and I don’t want to have to trade off what I can do so that I have the energy to shower some days.
Days are getting more frequent where I feel great for part of the day, and ready to faint, have too much pain or fatigue and have to lie down (but not be able to sleep, that would be too easy) for the rest. Times when things seem hopeless and there’s no way out. I keep telling myself it’ll just be a humbling story to tell my kids one day, because they won’t ever know what it’s like to live like this. But I can’t convince myself. I’ve been waiting for a very long time to be able to look back and feel happy and proud that I’ve crawled out of whatever has happened to me, but there’s no end in sight. I feel exhausted even contemplating what needs to come next to be able to do that one day.
I guess you could say this is one of the bad days, but I’m not even in pain today. I’m just tired. I’m so tired of being ‘on’ all the time in an effort to be normal, and I just can’t really seem to find the wherewithal or the energy to pretend.