ANYWAYS, I realize that the last time I posted anything was over a year ago... If I'm being honest though, I didn't feel like I really had any business posting about being sick anymore. I'm caught in this awkward functional state; not exactly "better" but I'm better relative to where I was in 2011-2013. How do you relate to people who are still home-bound when you're a now functional human being who can drive and go to school and can go to social events without a wheelchair? I felt like I could no longer relate. It seemed like bragging to talk about all the accomplishment. Then I remembered (with the help of my lovely dysfunctional body), that I'm not in the safe zone yet.
Trying to explain what is wrong with me just got a little bit harder, as if I thought it wasn’t hard enough. So what the heck is wrong with me these days? I mean it is a tricky question to answer. When people ask, "are you better now?" or "so you're normal again?" Umm... define better... I still can feel the blood pool in my legs when I stand, I've gone to after hours twice within the last six months, and I can feel the fatigue threatening to come back and take over again. However, I am immensely better than I was two years ago. Anyone close to me can tell you about how much "better" I am, but I wouldn't go as far as to say I'm normal. Normal would mean no more saline IVs, no more medications, no more high and low blood pressure, no more doctors or hospitals, and no more monitoring my activity.
I'll admit, I have been pushing my luck here with the amount of things I can juggle, but now I'm fighting myself to stay in it. Just for the rest of the semester. After that, I promise to be more careful.. So hilarious when my body thinks it's cute to show me who's boss (sarcasm).
My limits used to be so clear. I knew couldn’t leave the house. I knew I had to use a wheelchair. Everything was a matter of fact because I knew exactly where the boundaries were and what would happen if I crossed them. Now, more like sudden death HAHA!! (sorry I had to.. it amuses me to use gifs).
If people had doubts about me being sick before, they would definitely question it now, especially when I question my “illness” every day. I honestly question the legitimacy of it all the time. I wonder if I could have fought harder, if it was my fault for giving into the exhaustion, if any of it was real. I wonder if the people and doctors who say it’s all in my head were right.
So on a totally different topic, awhile back, I was supposed to have an endoscopy (shove a camera down my throat while under anesthesia) and the day before the procedure, I had to see the anesthesiologist. After the nurse took vitals and orthostatics, he came in to tell me he was refusing because it was too much of a risk. He had seen me once before when I had my wisdom teeth pulled and remembered because I was the girl with the blood pressure high enough to cause a stroke. Its amusing to see the nurses try not to panic when my BP hits around 142/93 and my mom laughs and is like, "oh good. it's low." But its been about a year with consistently concerning bp for someone my age and size.. Now all the doctors are starting to worry about the long term effect on my body. I guess I worry too. I don't want to be at risk for heart problems or anything, but I also just want so much to keep pretending I'm normal. Here is how I feel every time they say they don't want me on flourinef, the medication that basically stops me from passing out every time I stand:
Another unpleasant thing about this whole thing is the judgement. The judgmental looks for using a handicap parking spot when I look perfectly fine. Pretty, young, seemingly nothing wrong; what would you think if you saw me and didn't know why I was parking in handicap? I always wish I could explain myself every time someone shakes their head at me or glares. If I could say anything to these people who throw me dirty looks for using it, I would say this: "Yes. This is my tag. You don't know me, you don't know what I've been through. I look fine, but my situation sucks. There is nothing I can do about it, so if close parking is one of the perks then I'll take what I can get. I only use it on days when my energy levels are questionable, and lately that's more often than not. If you could walk a day in my shoes, you might understand how hard I'm trying to just make it through the semester." I know I've written about this before, but I think judgment in our society just happens on an involuntary level. We assume thinks without knowing, and its wrong. I saw a picture that said, "You don't know the storms that God has asked her to walk through" and it is absolutely true.
And one last word for anyone who is stuck with this stupid illness or something similar, just stay hopeful and if you're the praying type, pray. Yes, lots of doctors think we are full of it and they blow our symptoms off after a general orthostatic test, but there are good doctors too. My mom has argued and annoyed so many people to do orthostatics with a 5 minute pause in between, but their face when it just goes up proves that there is something wrong. What we're dealing with is not normal.
Also, remember this isn't your fault. you couldn't have fought it, you couldn't prevent it, and it is certainly not a punishment. Bad things happen to good people, but we can't confuse it with condemnation. Our struggle is just as real as any other illness even if it isn't as apparent. You may have been sick longer than me, you may be at the worst part of this illness, but there is still hope no matter what.
I can't imagine being a parent having to watch your little ones go through this, just know it can get better. I'm still praying for us all!
PS
On a happy note, here is a chronic illness meme that makes me laugh because its so relevant. BTW, spandex legging work miracles for POTS patients... wish i'd tried it sooner. Since leggings are a thing now, I don't really feel too stupid wearing them.
