There are a lot of inconvenient things in life: flat tires, the Flu, traffic, rain, paying rent, the list goes on, oh AND living your life out of pill bottles.
Whoever created the magical concept of medication is a genius. Without it I would be confined to my bed. However, I still hold a grudge to the fact that in order for the medications to work I must take them every day, EVERY. SINGLE. DAY.
For 2,125 days (approx.) I have lived out of pill bottles. And we aren’t talking take one pill and move on with my day, no, we are talking a handful of pills everyday.
I’ve found routine in it now, just like getting dressed in the morning, I must also take my medication. However, there is still the rare occasion in which I will forget, kind of like the days you walk out of the house and forget your keys. It’s an inconvenience, like getting a flat tire, or the Flu, or being stuck in traffic.
I did this the other day. Halfway to where I was going I realized I had forgotten to take my medication, and I didn’t bring them with me. I made the decision to not turn around. I knew I was going to be gone all day, but I told myself that I would be okay, that I had skipped taking them in the past before and I was fine, this wouldn’t be any different.
And it was true, I was fine.
For a while.
In fact I was fine for so long I started to think that maybe it was a Christmas (Halloween) Miracle. That somehow my brain had healed itself after 5 years. I tried not to think about the possibility for long because I didn’t want to jinx it, but as the hours went by, and I felt fine, I started to wonder more.
And then 5 o’clock hit.
I had been awake and functioning for 12 hours now without the medication when the brain fog started to creep around. Brain Fog is a very strange symptom for those that have never experienced it before. It’s one of the most common symptoms POTS patients experience, and I myself have had my fair share of it over the years. The best way I can describe it is confusion. When it happens I am aware that I am doing something, for example walking, however its hard for my brain to connect the pieces, where I am walking to, why I am walking there, etc. I complete the task, walk where I need to, and do what I need to, but it’s difficult for my brain to process the fact that I am actually doing it. It’s a feeling of confusion.
The brain fog creeped in and I realized that I was no longer fine, I mean I was FINE, I wasn’t dying, but I also wasn’t normal. I could feel the POTS, the symptoms I had once struggled with for so long, and worked so hard to make non-existent, they were creeping back. And not because my POTS was flaring, or because my treatment plan had stopped working, but because I made a choice. I chose to not turn back around. I chose to attempt to ignore something that has been un-ignorable for the last five years.
As I stood in the grocery store staring at all the different styles of canned tomatoes for ten minutes searching for ‘tomato paste’ only to realize I had been staring at it and reading it the entire time right in front of my eyes, I realized that it was not a Christmas (Halloween) Miracle. I had not been miraculously healed. The POTS had not up and left my body somehow. I read through my grocery list five more times before I actually put the pieces together and realized I had everything I needed. I checked out and thought to myself, ‘Merideth, how stubborn are you???’ ‘Did you honestly think a Christmas (Halloween) Miracle would happen 5 years later, and you would magically wake up one day healed???’
My mom was right, she always is.
She told me to turn around that morning, but I told her I would be fine. I rolled my eyes through my phone screen and called her ‘overbearing’ in my head. But she was right, she always is.
I don’t know how many times it will take me to learn this lesson. I am not sure why I repeatedly fall into this exact situation and make the same decision. I choose my plans over my health every time, as if they are more important, as if I am invincible. I am not invincible.
Maybe it’s that I’ve forgotten the pain, I mean I’m sure it is, because that’s the only logical answer. I must forget that even though I was fine for 12 hours, that for the next 12+ hours I’m going to pay for the choice I made.
I am going to regret not turning around.
I woke up the next morning as if everything was back to the way it had been. As if the day before I didn’t stumble aimlessly around the grocery store, or feel as if my brain was going to somehow just fall out of my ear. But it was too good to be true, I should have known I was ultimately going to pay for the decision I had made.
I was sitting in my lab class and I felt the headache begin to form, the ones I used to experience on a daily basis four years ago. The kind that make you feel as if your brain is non-existent because it just hurts to even think about walking. And then as I sat in lecture the nausea I had forgotten the feeling of, reappeared like an old friend. The one that used to accompany me daily four years ago. And not the upset stomach kind, but the kind where your stomach feels completely empty, yet somehow you feel as if you simultaneously are going to vomit everywhere. And as I walked to my friends car I struggled to keep up, because my legs were too weak.
I crawled in bed and wanted to hide under my pillows forever. I lied and told my mom I had a headache from the change in weather. I couldn’t tell her she was right, that I should have turned around the day before. I laid in my bed instead and felt a sense of guilt, and frustration.
Guilty because I knew the moment I realized I forgot to take my medication that I should have turned around. I knew what the right answer was, but I didn’t choose it because it would have been inconvenient. I would have been late to where I was going. I told myself I would be fine. Frustration because I have to live out of pill bottles. Because the Christmas(Halloween) Miracle didn’t happen. When I was younger I used to pray every night that I would wake up and I would be healed. I eventually realized that after three years of praying for healing, that it wasn’t going to happen and I needed to suck it up and learn to deal with it, but I still was frustrated because I thought maybe just maybe it would happen.
I am not healed. The POTS is still there. I still must live out of pill bottles.
It’s inconvenient. The whole situation is inconvenient. There is nothing convenient about not being able to maintain your health and wellbeing on your own. Heck, while we are on the topic of inconvenient things, let me hit you with a big one, falling 10 ft head first onto a solid ground, thats REALLY inconvenient.
The only convenient situation here is that I am not dead, and while I throw my pity party for myself in my bed, I can’t exactly get myself to realize the convenient things in the moment.
There was no miracle the other day. I knew all along there wouldn’t be, but I told myself otherwise.
The fact of the matter is that I have POTS, I still have POTS 5 years later. I live out of pill bottles, and will continue to live out of pill bottles. It’s inconvenient. I don’t know if this will ever change. For every year I get farther out from my accident, the likelihood of me healing increases a tiny bit sure, but not as much as the chances of me having to live with this for the rest of my life increase.
I would be lying if I told you I wasn’t healing, because I AM healing, but slowly, so slowly that it’s basically impossible to understand. Which brings me back to the day I was diagnosed, and the only words that followed after the diagnosis “this is not a sprint, this is a marathon, this is not going to take months to improve, this is going to take years, many many years”.
So maybe the other day when I didn’t turn around, when I forgot the feelings of the payback that would occur, maybe I was just testing the waters. I mean if you ask me it’s been many years. How many years was he talking about when he said many? I’m ready to get this show on the road! But I must be patient, I must learn to pick my health over my plans, which I usually do a great job at, except for the rare occasion in which I’ve decided I am somehow deserving of a Christmas(Halloween) Miracle.
It’s inconvenient to live out of pill bottles, but it’s more convenient than dying, and I do not want to die.
I have this naive idea that the day it is determined I no longer need to live out of pill bottles that I will just wake up, stop taking them, and move on with my life. But this too is another one of those stubborn thoughts. It won’t work that way. The day that I no longer need the medication to survive will be a day full of difficult withdrawal. It will be an entirely new inconvenience right before my eyes. It will be a day, and many months, and many years of training may body once again how to care for itself on its own, without the extra support. It will be inconvenient, because taking the pills would have been easier, and I’m not ready for that yet.
I didn’t get a Christmas(Halloween) Miracle, I got a slap in the face from reality. I got a ‘told ya so’ from my mom, (or at least I will within the next hour after she reads this). I got the ‘oh hey remember me’ from the POTS that still lies inside me.
And thats okay, for now, until I forget all of these things, and somehow stubbornly manage to put myself through it all again. Because that’s what it’s like 5 years out from something terrible, you hold onto the tiny tiny bit of hope you have left for improvement, and you pull it out and use it as an excuse when you’re too foolish to admit you need to turn around, to own up to the fact that you live an inconvenient life but must take the necessary steps to make it convenient anyways.
Maybe now that this is in writing I won’t forget. Maybe when I think for a second to keep going, I will remember this post, and I will turn around.
Probably to, because I’m stubborn, but it’s worth a try.
And maybe if it doesn’t remind me to turn around, it will remind you.