My dear readers, I have to apologize to you.
I have been extraordinarily negligent and simply dropped off the face of the earth. I won’t flatter myself that a simple blog post is necessary to any of our lives, but I always hate when a blog I connect with just withers away and dies. Themissespots is not about to die. I just haven’t made time. This is Teddy by the way.
This semester, I was determined I was going to be well. I took 15 units (which, to a healthy person is but a trifle, but for anyone who has significant hours in the day that their body is unusable, it’s a herculean task). That would probably be enough to fill my time, but I don’t do things by halves. I joined the honors college, became a leader in my campus ministry, Intervarsity Christian Fellowship, and suddenly I had a very full social life. I have a group of friends that I’m very close to, we go on tree climbing expeditions at midnight, we play Ultimate Frisbee (and by play I mean massacre each other), and lounge about for hours. I didn’t think any of this was possible last semester.
I also decided to try and look well by wearing dresses every day, making an effort to get my acne in line, and growing my hair out. I was just tired of being sick. Every part of me really wants to be well. I want to be that competitive and bright woman my body promised to be in high school before I got sick. But you can’t really force these things. As well as I look now, I’ve found there are some parts of me that are going to take a lot longer to heal. And I’m not entirely sure when they’ll go away.
Don’t get me wrong, part of this is a success story. Between going on runs almost every day and by taking Lexapro my quality of life has increased exponentially. My closest friends get confused sometimes when I tell them I’m sick. This is mostly because I’m so aggressive on the frisbee field (Yes, I did just say aggressive and frisbee in the same sentence. There’s rarely a night where one of us doesn’t leave the field bloody and bruised). I haven’t been terribly ill. For once I haven’t had any moments I was worried I would have to leave school. There have been the occasional weeks where I can’t get out of bed. Those days (or weeks) are mostly far and few between. And I am so grateful. Because I know what it is like to feel that way for months, and suddenly a week doesn’t seem that terrible.
There are parts of POTS that are less simple to talk about. I don’t know why that is, why one symptom is more ignoble than another. But it’s the truth. The mental side of it especially. Through late nights and mountains of homework I’ve noticed I’m not who I used to be. I used to be incredibly even keeled and nothing could shake me (well, nothing except Pie when she started bugging me, but thats luckily in the past). Now, I have parts of my mind that just aren’t mine anymore. I have anxiety. My anxiety can be low level, and that will act up for a week or so. Or it can be so intense I just have to curl in a ball and shake. Either way, it’s not something I would wake up my roommate for. I just took it as something I had to deal with. But I don’t talk about it. At least, not to anyone outside my family or a fellow POTS kid. It’s strange though, because even that’s a bit dicey. Just because you have POTS doesn’t mean you have anxiety. Pie doesn’t have it. We have slightly different symptoms. For example, her immune system is shot and she gets colds all the time. My virus of choice is stomach flu. Go figure. But hey, there’s a reason we liken our symptoms to trading cards. Gotta catch ’em all right? No?
I am not a leading expert in anxiety. It doesn’t affect my quality of life on a daily basis. I spend most of my time ignoring it. But when it hits you full force you can’t ignore it. Plus, it affects everyone very differently. We all have different methods of dealing with it. So, because of this, I asked a few friends to contribute about their experiences with anxiety. They are both very inspirational people and I am so grateful they agreed to share parts of themselves with us.
Hi, I’m Beth, and I have anxiety. It’s strange how much one word can change your life. I have general anxiety disorder and agoraphobia. The general anxiety means that I just worry about every little thing. Things that are no big deal to others are terrifying to me. I have a hard time going to movies. Or going places I’ve never been before. I’m scared of the unknown, of things that will hurt me. The agoraphobia is fear of being somewhere where I can’t get help. I’m afraid to travel for this reason because my brain thinks that when I’m driving between cities, I’ll have a heart attack or stop breathing and I won’t get help in time. At the root of it all my biggest fear is death. Generally when a panic attack strikes my body reacts too. My body temp goes up, I feel clammy and sweaty, I have trouble breathing, and my stomach gets very upset. I try very hard to avoid anxiety causing situations as much as I can because it’s embarrassing to have these reactions I can’t control.
I went on meds for the first time in the fall of 2009. I was on one antidepressant and one suppressant and I took one each day. The suppressant made me so tired, I would take two or three hour naps a day and still be tired. I was missing out on life. I was also going to counseling at the time. The counseling was helping but I was still afraid to go places. I was even afraid to go to counseling. I would literally have panic attacks in the office. I was then switched to a different medicine and I switched doctors as well. As I was taken off the original medicine I was introduced to the new medicine and when I got to a 50/50 mix of the two I would become extremely dizzy. So I stopped taking the medicine altogether. I was okay for a while but then the anxiety started coming back. I was afraid of everything. No where was safe, I’d have days and weeks where I would just feel anxious and not do anything other than pace the house. Now I’m on Paxil CR which is still a little complicated because I have to take half of my dose at least 7-8 hours apart. For whatever reason my stomach hurts really bad whenever I take it. I’m also on Klonipin, and that’s my rescue medicine. So if I don’t want to have a panic attack if I’m going to a movie or somewhere I’ve never been or I’m not comfortable with, I take it. I also use it for when the panic attacks happen but thankfully that hasn’t been as often.
I have been extremely blessed to have a mom and brothers who have been with me though this, and not to mention all of my friends. My friends have been one of the best support systems. They sit and talk with me, pace with me, make me laugh, distract me, make me feel comfortable and at home, change their routines or plans for me. They’ve done so much and I am forever grateful to all of them. My mom has been there with me the entire time, holding my hand, literally and figuratively, praying for me, talking with me, taking me to appointments and reminding me to take my medicine. She’s been my stronghold in all of this. It’s been three years and even though I still have panic attacks, I don’t get them nearly as often and I know how to “get out of them” so to speak. The last one I had was at school, I had just gotten there and I was supposed to go take a test but I was panicking, most likely over not being able to breath/dying, and so I went into the bathroom and called my mom and talked to her for a bit. I also texted some friends, asking them to pray for me, and then I tried to distract myself by playing games on my phone. Since I was in the large stall I also paced a little bit. I’ve found that moving around helps me. It makes me not feel so trapped in my mind. It’s been a really hard journey but I’ve learned how strong I can be, and how amazing my friends and family are. If you’re struggling with anxiety please don’t hesitate to ask anyone for help, it’s out there, and while you might have different reasons for not getting it, you’ll be better if you have even one person to hold onto when the anxiety hits. That’s how I got though it.
I have a confession to make. When I was asked to contribute to this blog post on anxiety, my immediate reaction was, well, a paralyzing wave of anxiety – immediate self doubt as to whether my debilitating experiences with anxiety could really be helpful to anyone else. But what I have recently become aware of is that though I may feel weak at the moment, weakness does not mean I am unusable. This blog gave me strength and encouragement when I wasn’t sure I could make it through another day. So I will share. I will tell you about the pain. But I will also tell you about the victories, because not only do you need to know, but I also need to remind myself that I am who I am, I am where I am because God made me this way. I am not ruined, only a little broken.
I have felt the grip of anxiety on my mind and body in the most intense and debilitating way. And I’ve had moments where I’ve felt as if it was in complete control leaving me totally at its mercy. Anxiety itself comes in many forms and attacks in various ways, but the common denominator is that it really, truly can affect everyone. A couple years ago I started getting these very intense anxiety attacks in my sleep. I would wake up shaking, heart pounding, muscles tensing, breathing hard. The scariest part about them was that I felt utterly out of control. The feeling of dread and helplessness replaced any rational thoughts I may have had. Needless to say that with these panic attacks, I started sleeping less and less, which just perpetuated the problem. The anxiety started to leak into my everyday life. The basic stresses of life, those that naturally occur from school, work, and a social life, began to cause bouts of anxiety in my waking hours that I didn’t know how to deal with. My heart would beat so fast, my stomach would churn, my chest would tighten, and most often I would cry. This anxiety made me constantly question myself and my decisions. It made me feel weak and like a freak. I felt like my mind was betraying me. I literally felt like I couldn’t handle my life.
As it turned out, I was quite sick. I have a similar illness to that of Teddy and Pie. Even though I had an explanation for why I was so tired, why I couldn’t sleep, why my body was so weak, the anxiety still persisted. My illness seemed to fuel it. I was not able to develop any adequate coping skills either. For a while I relied entirely on medication to keep it in check, and though the meds helped the intense anxiety attacks, I still felt like I was one stressor away from breaking down again. Now, I have absolutely nothing against prescribed meds (Heck, I’m on a whole bunch of them. And many of them help), but after spending far too long letting every anxious whim I encountered rule my life, I’ve realized there are some other ways to cope with the effects.
Now, before I became too sick to be physically active, I found a wonderful release in running. Adding exercise into my daily routine made a big difference for me. It provided me with an exhausting (in a good way) distraction. I would put together a dance worthy playlist on my iPhone and literally run the anxiety out of me. This also worked with walking and the aerobics class I took at my mostly senior citizen gym. For me distraction is my best weapon against anxiety. With being sick and basically homebound these days, I find myself constantly facing anxiety. If I let myself, my mind could easily become paralyzed by the hopelessness that accompanies my fear that I will never get better and will forever be unable to do the things that make me feel good about myself and bring me joy. But that will get me nowhere. I’ve tried it. It’s an endless cycle of despair and self-pity. What I have to do is keep my mind busy, so I do what I can. I watch my favorite movies and TV shows on Netflix. I read whenever I can. I listen to music to sooth my soul. I try to go outside and enjoy the fresh air. And I let other people help me. Cutting yourself off socially will only further your anxiety. Let the people around you who truly care about you be a part of your life. Be honest with them. Not only will you be infinitely less lonely, but you might also find some sympathy and encouragement, which can really give you an extra boost. Finally, please, please, please don’t ever feel like there is something horribly wrong with you or that it’s all in your head! Anxiety is very real and it has snaked its way into my life in a very real way. You are not going crazy nor are you merely weak. What you are is strong for acknowledging it and dealing with it. I am still learning to cope. I still get anxiety attacks, but what I have found is that I am not completely as out of control as I once thought. I am slowly discovering ways to wade through the anxiety and live my life, in whatever capacity I can.
As you can see anxiety is a real problem that POTS kids (and other people with chronic illnesses) have to deal with. It’s nothing to be ashamed of and it can be helped. There are ways to feel better. Unfortunately, most of them you can’t do alone. Beth has her mom, Emily has come to the realization she has to rely on friends as well as family. Medications can also help. They don’t help all the time, but some of the time. My heart last year paired with the anxiety attacks to make any little surprise feel like a falling dream. Eventually, we talked to my cardiologist (who kicks butt, besides my dad he’s the first doc I actually ENJOY visiting) and he put me on a drug called Lexapro. Apparently some of the side effects help POTS kids. Who knew? It got my heart racing under control. As long as I minimize the stress the panic attacks are generally manageable. They just aren’t manageable at the moment. I blame this on the fact that I spent the entire semester not getting enough sleep. Yes, I know! I’m being hypocritical to the nth degree. 5-6 hours of sleep is not enough for a POTS kid. I need 10. I knew that I needed more sleep but I became so caught up with being busy I ignored it. By doing all of these activities I sacrificed my sleep. Anxiety happens. So let this be a lesson to you my dear reader. SLEEP!
What do you do after you’ve failed that first command? You’re stuck with a royal panic attack and whatcha gonna do? Well, everyone has their own method. Mine is almost identical to Emily’s. I try to go on a walk or a run.
Going on a walk or a run isn’t always possible considering the whole POTS condition. Petting my head is a good substitute. No, I’m not a cat. It’s just what people do in my family to show affection. Sometimes physical affection helps more than anything. Sadly, I don’t get my head pet at school. So, a dark room and Netflix instant play are my new best friends. I can’t sleep with panic attacks, I just can’t do it. When I can’t sleep sometimes watching an entertaining episode of something will distract me long enough for my anxiety to run its course. My choices of pleasure are:
1. Dr. Horrible’s Sing A Long Blog
It physically cannot NOT make your day. It’s one of my favorites. It’s by Joss Whedon (who did Firefly, Buffy the Vampire Slayer, Dollhouse, the Avengers, see a pattern of awesomeness yet?)
Let’s put it this way, I want to be an archaeologist. She’s a biological anthropologist. The humor is great and the science matches up with the classes I have had thus far. I can’t promise some of the higher tech stuff is accurate, but telling age, gender, ethnic origin, etc. from a corpse at a crime scene is fairly simple. I have been learning to do that. I’m actually taking Forensic Anthropology next semester (so PSYCHED!) My professor is a curator at an anthropology museum so we’ll get to play with the bones and stuff! Anyways, choose a show that is upbeat, interesting, and appeals to your interests. Mine generally have to do with mysteries or fantasy.
3. The Legend of Korra (not on Netflix, but readily available on itunes or the internet)
For anyone who liked Avatar the last Airbender (the TV show, I have heard nothing good about the movie) you’ll like this just as much. It makes me giggle to no end. If you can’t find it, message Pie or I in a comment and we’ll direct you to where we watch it.
Eating small amounts of food helps me, as does tea or a milk and honey mix. Also, ( I cannot stress this enough) if you feel like you having someone in your life that you can talk to like a family member or roommate, do so. Sometimes getting rid of the trigger is the only way to deal with it. Anxiety can be related to whatever is going on in your life at the moment. But, if you’re dealing with anxiety currently I’m probably not telling you anything new. I sometimes will get stressed out about a relationship, a friendship, or etc, and talking through it with my roommate, mother, or Pie is the only way I can calm down. Otherwise the thoughts will just bash around in your head. Journaling and writing lists can also help me put my thoughts in order. If I can run that day, afterwords I will spend some time at my campus chapel praying. The silence and acknowledging it’s okay things are out of my control, sometimes helps me more than anything. I don’t care if you’re religious or not. Quiet and peaceful places help.
What works for you guys? This is a rather personal issue, so I understand if it’s hard to talk about it. That’s why I asked some of my friends that suffer with anxiety about how they deal with it. I wanted to show you it’s a widespread problem and that you can get better even though it seems hard.
So, I hope that this will be the first of many more posts. I won’t have internet at my field school, but hopefully I can still write. Maybe while I’m on a weekend trip I can shoot a post on stolen wi-fi. I’ll get on Pie too. I know this was a monster post, but it’s a big subject. If you’re having a hard day, I hope this distracted you for a bit : )