One Month To Go, And A Big Anniversary

I had my 5 year anniversary with POTS this month. It’s really weird because part of me feels like it’s been forever since I’ve been normal. College and before feels like some sort of dream, and I am so conditioned to take care of myself like a POTSie that I don’t think just standing up after lying down feels normal for anyone, and carrying a case of water bottles without pulling something out of a socket or going through excruciating pain is impossible to all human beings. The other part of me feels like I was well just yesterday, and my body misses just living life physically feeling nothing. I’m not used to being in pain so much, and although I am able to feel more optimistic when I do have a stretch of high pain days, I still question how tough I really am and whether I can keep loving my life through all of the intense and nauseating hurt. I can’t describe my pain well. It’s not aching, but it’s what I imagine arthritis feels like, along with a lot of burning, knotted tightness.

It frustrates me that instead of writing about all the joy I’ve had in my life the past few months, and about how the wedding planning process has gone, I just keep going back to writing about this because I can’t sit down and think of anything else when I sit down and focus on the way my body is feeling. The pain is at the forefront of my mind because I can’t just shove it down anymore and try to ignore the 4-6 my body normally rests at. It’s been a blaring 8 for about a week now, and I’m just really worn out at this point.

Through all of this, I am still genuinely happy. Despite feeling heartbroken or frustrated with loss, I don’t feel depressed about my illness, which is kind of shocking when I really think about it. I completely attribute this to God putting a loving hand on my heart, and I am thankful that throughout all of this my mental health has stayed in tact, as that would be a whole other battle in itself. Getting the chances to be so joyful with a chronic illness isn’t necessarily common amongst people who are sick, and I can see why. It’s absolutely exhausting waking up day after day being in pain and having a wide range of symptoms  that you just have to deal with while living life.

Photo Credit: Katie Nesbitt Photography

I am hoping to get a few little updates done about wedding planning, since we have less than a month to go now, but I’m thinking many will come after our big day. I want with all my heart to be writing a lot right now, but it just isn’t realistic with how I have been lately. In the meantime I am trying to enjoy the little things in life like watching Big Brother, talking to good friends on the phone, going for walks, and enjoying the company of loved ones.

You Up?

My arms are killing me right now. I am beyond exhausted, but I can’t seem to fall asleep. This can be a common problem for people with all sorts of chronic illnesses, or even just regular people with stress. My problem is that I am sometimes worn out from just living day to day life.

I don’t complain to people very much in person because complaining isn’t really my thing. I love being positive, and honestly feel like I am a lot happier when I can look at the bright side of things in life. Sometimes you just fake it till you make it, right? This can be a double-edged sword, though. It’s wonderful because I can keep my relationships light, and add more joy to both my own life and the lives of my loved ones. It’s hard, though, because I feel like the less I talk about my symptoms, the more they are just forgotten.

You can’t see when I’m dizzy or nauseous or in pain. I have said it a million times, and I’m sure I’ll keep chatting about it on here — you cannot see signs of invisible illness. If you look closely, you’ll notice the bags under my eyes have become darker and deeper the past several weeks. I look in the mirror when I take my makeup off and can tell there’s been more wear lately. You can’t see the way my arms feel ropey and knotted, or the fact that my thoracic spine is as stiff as a board, though. I went to a Nationals game a few weeks ago and thought I might faint a few times. I stood and talked candidly about my wedding plans and how I don’t know very much about baseball, but I felt the stadium spinning circles around me as I spoke. It felt like I had left my body and was being twirled around and around on an amusement park ride.

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When my POTS acts up it starts by slowly tightening everything in my chest and heating up my face, then moves to what feels like my body overheating and getting ready to shut down. In the same way that Robert’s gaming computer’s fans started whirring frantically when it was overheating, my body goes into panic mode to try to keep myself conscious by either getting into a horizontal position or rushing blood back up to my brain in any way it can. Sometimes that involves fainting to facilitate the blood flow, but luckily I have learned the signs of when I need to sit down.

Emotionally, I can feel drained with all of this. The more I write the more I expect people to understand. The less I feel understood, the more I want to scream. “I know I am the exact same person in your mind because I look normal, but how the heck would you feel if you woke up tomorrow and had to give up your job, your independence, your financial stability, and your working body?!” What frustrates me the most is how hard it is to wrap your mind around what life must be like as a young person who is sick. It kills me that I can’t go out with friends and family on long hikes, and that I don’t have the option to turn down camping just because it’s too hot out and I don’t feel like getting sweaty. I miss running, I miss going out dancing until the wee hours of the morning, and I miss competing. I absolutely hate not being able to compete in any kind of sport anymore, which is why I have opted for being a cutthroat board game player instead. It often doesn’t feel fair that other twenty-somethings take their bodies for granted or understand just how lucky they are to go to work every day and walk around pain-free.

I will keep writing because I want so badly for you to understand. I want you to love your own body fiercely for the things it can do, and I want you to realize that just because I am not playing volleyball or tagging along on your wilderness hikes doesn’t mean I don’t want to — it just means I either physically can’t, or it’s not worth how many days I know I will pay for the fun after the fact. I remember when I graduated from college and a friend began having severe chronic pain. I felt terrible for her, but I also didn’t get that her life would be changed forever with her new fibromyalgia diagnosis. It’s easy to move on with your day and forget about how other people are feeling when you don’t understand their journey, but it becomes a whole new ballgame when you meet someone who is struggling with something that you have already been through. Next week I am going to talk some about empathy versus sympathy. I have learned how to be empathetic to others the hard way, but I also think it is one of the most beautiful characteristics I own now. You don’t always have to walk a mile in someone else’s shoes for your heart to really understand what they are going through.