Sorry to be blunt, but honestly, there is just no other way to eloquently say that.
Not knowing how the day is going to go. Sucks. Taking pills and handfuls of salt before getting out bed. Sucks. Being exhausted just from getting yourself out of bed. Sucks. What else is there to say?
When you have a chronic illness, you go through a love/hate relationship with it. You learn to love it because it is your new way of life, but it does not mean that you don't have days where you just absolutely hate it. Honestly, who would love it just because they want to? I have learned to be okay with it, but I still have my occasional days where something from my personal or professional life is affected by having a chronic illness, and I just hate everything about it.When I met my current POTS doctor, he told me I needed to be okay with myself when I had an episode, or just any rough day. At the time, I remember silently screaming, "Are you kidding me?! My body revolts against me on basically a daily basis and you want me to be okay with it?!!" I mean, who wouldn't be angry when they keep passing out or missing out on their life because a chronic illness has slowed them down?
However, my doctor has done this a time or two before, and I am pretty sure he knew what I was thinking, because his next statement was, "You are training your body to shut down and be upset every time you have an episode and you can't do that because this is your new normal." I left the appointment with a list of books to read to help me change my attitude and with some notes from my doctor. Bullet point number one was for me to start practicing positive cognitive behavior for any negative thoughts. At the time I remember joking with my mom saying I should just wear a rubber band on my wrist and for every negative thought I had, I should just snap the rubber band. We laughed about it, but of course there was some truth to the fact that I needed to learn to deal instead of just being upset.
I read all the books recommended by my doctor plus books that I thought would be interesting to help me deal with my chronic illness. The one book that did help me was a book called, How Can You Not Laugh At A Time Like This by Carla Ulbrich (the Singing Patient). She has several chronic illnesses and therefore has a different outlook on dealing with chronic illness and she kind of helped me start to be okay with my health and adjust to my new life living with chronic illness. I encourage you to read it.
Since that appointment with my doctor telling me I need to change my attitude (and reading everything I can on dealing with something like this), I feel that I really have changed my outlook on my life when dealing with POTS. The issue for me is, my life feels very stalled. One of my bigger hurdles that I face is my personal life. Whether it is making plans with friends, meeting new friends or going on a date. I have to really plan out my day before that night so that I have the energy to go out, even for just a couple hours. Or more than that, if I am on a date, when do I tell the person I have this chronic illness that affects me daily. Or the bigger question is, should I forewarn that person that I can't stand too long, but finish that statement with, "Don't worry, if I pass out, I will wake right back up as soon as I am on the ground." It sounds hilarious when you write it out like that, but it is frustrating that there is so much truth in just that one sentence. And that specific sentence can terrify someone who has never been around anyone with a chronic illness. While that is my biggest hurdle, others in my support group face other issues. For instance, the parents in my group, have to learn how to save their energy to spend time playing with their kids and spending time with their family.
Since my illness has gotten worse, I have learned three big things: 1) I will always have a love/hate relationship with my illness; 2) It is important to find your own way of coping with a chronic illness; and 3) While having a chronic illness is not fun, it helps you find an inner strength in yourself that you might never have found if you hadn't been diagnosed with said chronic illness.
So, yes, having a chronic illness sucks, but it is how you learn to deal with your chronic illness that helps you get through it. You have to learn to separate yourself from the people that just cannot deal with your illness. It doesn't matter if they are friends or loved ones, their negativity towards you and your illness poison your own mind and body and will have an overall affect on you.
So, my final thoughts are: Be true to yourself. Give yourself a break. It's okay to have negative thoughts every now and then; and Always remember to celebrate the small victories that you have each day, whether it is going to the store, hanging out with friends, taking your dogs on a walk or even just getting out of bed. Because while those may be trivial things for a healthy person, they are huge victories for a POTsie or anyone with a chronic illness.
