You're Not You

My illness is a huge part of my life, I live with it every day. When you are diagnosed with a chronic illness, many people say to you “you are not your illness.” I have heard it many times. Along with, “don’t let it control your life,” or “it will get better.” First, I may not be my illness but my illness is defiantly me. Second, how the hell can I not let my illness control my life? It is an illness! An illness that I will have for the rest of my life. That is what ‘chronic’ means. I really hate to say that, but it is true. Third, you do not know if it will get better. It may be better some days. But on the days it is not, those days are awful. I feel so alone, weak, and useless. Those are the hardest days. Finally, when you’re diagnosed, it is like a weight has been lifted. This is because I finally know why I have been feeling like complete shit for the last four years and it explains every little unexplained symptom that put off my diagnosis for so long. You’re not you. After you are diagnosed, you are no you anymore. You are (insert chronic illness(es) here). You are paranoid, thinking about treatment options, wondering when and where you will be when you are symptomatic, and if the people around you know about it or how they would react if something did happen. You are not you in the aspects of your mentally, emotionally, and physically not you anymore. Although, you may physically look like you have always looked you sure as hell don’t feel like you have always felt. You are not that girl you used to be before the diagnosis. You know the signs and symptoms to look for to prevent yourself from getting worse and ending up in the ER. You are that girl that is paranoid about every little aspect of your day and how much energy it will take out of your day. Your illness does control your life because it is always in you and on your mind. Because if it wasn’t then how would you be able to take care of yourself. You are that label of yourself. Whatever label you put on yourself… it may be the name of your illness, it may be how you are currently feeling, how you know other people look at you, or how you think other people see you. I personally will always think labels are a good thing because that way you will never lose something and you will always know exactly what it is and stands for. But don’t live by that label. Your whole perspective changes, in many ways when you are diagnosed. It continues to change when you hear others stories about their illness. It will every day you live with your illness. 

What works for me (right now)!

I have many symptoms with this syndrome. And many people including POTS patients, other people with chronic illnesses, and people who love giving suggestions all have this in common, they like to tell me what and what not to do about my illness. Yes, I do sometimes take it in but other times I could really care less what you think I should do with my illness. It is MY illness and MY body. I can make my own choices about my health. A lot of POTS patients say not to take drugs because there are too many side effects and because exercise and diet have worked for them, so it will "obviously" work for me. NO! You are wrong. I have tried all of that. I need meds to control my symptoms. I don't even take them everyday, I take them as needed, usually when I know I am going to be on my feet for awhile, or if I have an emergency (like when I am having a really bad set of symptoms or if they just come out of the blue). And guess what? They have been working, sure, I have had a few minor side effects. But I would rather deal with those than my out of control symptoms. A few symptoms I am having with my POTS is that my hands and feet get really stiff, cramped, and painful (nerve pain). Lately, my hands are ten times worse during sleep, I can't even make a fist because I am scared my fingers will curl.  The meds do not help with those symptoms. So sometimes I wear a brace on my right hand, it helps a little bit, not a whole lot. Last week, I went to the Mall of America with my friends and we stopped in a store called Lush that makes "Fresh Handmade Cosmetics" and they have samples everywhere. So I tried some body scrub called "Ocean Salt," ironically, on my hands and afterwards they were the most relaxed they have been all summer. So I bought some!! It got me so excited! That is what is working for me 'right now'! Here is a link to the Lush website: http://www.lushusa.com/on/demandware.store/Sites-Lush-Site/en_US/Search-Show?q=ocean

"What you don't know"

Written on: 15 April 2015

You don’t know how hard it is for me…

               To wake up in the morning

               To take a shower

               To get dressed

               To put my makeup on

               To go to class

               To keep that beautiful smile on my face

I am not depressed

               I am struggling

               With an invisible illness

What is that you ask?

You may not know this but right now,

               My hands are shaking

               My nerves are acting out

               My feet and hands are cramping

               My legs feel like they are going to give out

               My head hurts

               My chest hurts

               My heart feels like it is going to beat out of my chest

               I am exhausted

               I can’t concentrate

               I am having shooting pains in my legs and arms

               I feel faint

               I feel dizzy

               I feel weak

               I feel like I am going to collapse

I am having a flare up

And sometimes it feels like it will never go away

No matter how hard I try

No matter how hard I take care of myself

No matter how many times I do what the doctor says

I am feeling like SHIT no matter what

Because if I am not having a flare up I

               Am worried when the next one will happen

               Am scared that I may embarrass myself

               Am hoping people will understand

But I know they won’t unless they have what I have

An INVISIBLE ILLNESS.

You're on your own.

I am realizing that it doesn't matter where you are in the world or if your with anyone because ultimately you are on your own. You have your own thoughts, feelings, moods that nobody else can understand. Unless you do find maybe someone that is going through something similarly as you but it all comes down to you. It is easy to exchange feelings and thoughts. It is easy to cast your mood on others. But will they ever REALLY understand you. And what you are going through at that time in your life. No, they will not. Because there is only one you.