Dear POTS...

     This has been a long time coming but there's something I need to finally say. I hate you. I hate that you hold me back. I hate how sick you make me feel. I hate how you always choose the wrong times to show up in my life. I hate how easy it is for me to say your name. I hate how you stay invisible to the outside world. I hate that no one can see you or see what you're doing to me. I hate that I can't explain you. I hate that I can't understand you. I hate how stupid you make me look. I hate that I can't walk through the mall with my friends because I'm afraid you're going to pull me down. I hate the looks I get when people around me think I'm faking you. I hate that you make it hard for me to concentrate. I hate how you messed up high school for me...and volleyball, and the gift of being social. I hate that the contacts in my phone consist of doctors. I hate that you demand medicine that my insurance company will no longer cover. I hate almost blacking out every time I stand up. I hate that standing is now a chore. I hate that I have to plan my day around you. I hate how you limit me. I hate that no one can see my pain. I hate being the sick girl. I hate that walking is to my body what running a marathon is to a healthy person. I hate that getting excited and laughing can make you worse. I hate regulating my feelings so that when you hurt me I don't burst into tears and when something good happens I have to calm myself so you won't attack me. I hate that you make it hard to sleep. I hate the pills, the stockings, the loss of satisfaction in eating, and the sloshy fish tank I have become. I hate acting like I'm fine but I can't bare to bring others into my pain...I makes it real.
     I know that good has to come from you but I don't have to pretend I'm okay with having you around. You've hurt me. You've amplified my need to be alone and left me alienating everyone around me. We have our ups and downs but when I'm down I never feel like getting back up. I feel like you've taken my life in many ways but what sends me over the edge is that you'll probably take my kids lives as well. You make everything difficult. Eating, walking, standing, sitting, reading, studying, breathing, thinking, writing, singing, talking...will you ever stop? Can you ever stop? I don't remember what it's like without you. I don't remember taking all these things for granted. We've been together 5 years. They told me 6 months, then 1 year, then 2, then 3. No one understands this thing that you're doing to me. Why don't you knock me out? What's stopping you? Maybe people would understand if you took you're job more serious. Maybe they would be able to see the effect you have on me. Maybe I would have been diagnosed in a few months rather than 3 years. I hate you so much. I would scream if I thought it would do any good but it just amplifies my pain. I hate you but most of all I hate that I love you.
     I hate that it brings me some kind of weird satisfaction to know that I'm different. To know that I have an excuse. I hate that through you I hold myself back. I and no one else. I hate that I use you. I hate that I let myself down because of you. I hate that when I talk about you I feel some kind of weird satisfaction. I hate that I think you're cool. I hate that I struggle finding my identity without you. I hate that I love the drama. I hate the way you give me some sort of power. I hate that I have a blog devoted to you. I hate that I want people to read it. I hate that I distance myself because of you but at the same time I want people to know me...all of me...even you. I hate how self conscious I feel because of you. I hate that I care what people think of me because you make me look so foreign.
     I wish you would stop. I wish you would just go away but at the same time I wonder what I would do with myself once you're gone. Who would I be? You've changed me. For good or bad, you've changed me and there's no going back. There's no such thing as normal. I can never be normal again. Even if you leave you never promise you won't come back. What if I can't take the suspense? I'm finally starting to accept you and I'm realizing that being with you is like being in an abusive relationship. You've got a hold on me. Even if you left me alone I might not survive without you. I can't take the beating but I can't imagine life without you. I don't think life can exist without you. Everyone has their opinions on how I should handle you but honestly I don't think any of it really matters. Can I be anything with you? Should I stop trying? I hate the questions you make me ask myself everyday. I hate you but I love the way you lie.

Standing is a gift...

    I am currently in the process of figuring out life and how I can actually live it with POTS. One of the things I am trying to implement into my life is a steady job. My biggest frustration is that I can only apply to jobs that don't require constant standing and even the jobs where I could possibly sit won't want me once they find out that I'm broken. I don't fully understand POTS so how am I supposed to explain that to an employer and then be confident enough to where they decide to give me the job? I feel like I'm stuck. I'm stuck in this place where I'm not sick enough not to work or be in a wheelchair but I am sick enough that standing and sometimes just life in general is an issue for me. All you POTS patients know exactly what I'm talking about and for those of you who don't I have some very simple advice; Standing is a gift. DON'T TAKE IT FOR GRANTED! And when you think about complaining that your feet hurt because you've been standing at work all day remember that there are people who worry more about their consciousness while standing then the condition of their feet. I'm not trying to be harsh just honest. Remember how blessed you are, even if you do have POTS you are still blessed.
    Thank you all for your emails and comments. I love hearing from you and I am so thankful that I have been able to encourage some of you in a small way but I have to set something straight. I am not strong in this and my attitude is not admirable. I have spent so many years trying to convince myself and others that POTS hasn't really effected me that I started to actually believe that I was okay. Even today while looking for jobs, thinking about future plans, and regrets I would forget about POTS all-together. It's like I subconsciously block it out entirely and once the memory comes back I am shattered once again. I have had very dark days in the past few years, even in the past few weeks. Usually it all comes in waves but for the past few months the darkness of POTS has been constant. I believe that I am either in danger of becoming depressed or I already am. There have been a lot of changes this year in my life and I know there are many more to come. I don't say any of this to get sympathy I just want to be completely honest about where I am. I am hoping that my mother will not read this post because I would hate for her to know how I am really doing but I feel that I am being dishonest if I don't say how I really feel. I pray so often that I could just quite POTS and it kills me that quiting is not an option.
    POTS is a constant cycle of new treatment that doesn't work along with test after test that come up empty, and the worse part is that there is no option to opt out...you're in it for life.