I wrote an entire blog post, erased it, and have been staring at the screen completely dumbfounded. How do you explain the unexplainable? How can you graciously share the reality for so many, when the reality is not a simple description? I feel I need to preface this post by saying I have the most amazing support system. They have given me the courage to come forward and to be transparent and share my journey. I am not told I am lazy, worthless, weak, etc. Instead, I am encouraged with words of affirmation and their actions indicate the same support. But, I also speak with a large group of women daily who do not have the same support system I do. I hear the defeat in their voices. I see the pain in their eyes and my heart breaks.
I get it! I really do! How can someone be ok enough one day to go out (although you have no idea how much planning goes into going anywhere) and then the next day not be able to leave their bed? How can someone visit with friends and then spend the next two days on the sofa recovering in pain? It does not make sense. Here is a secret most POTS patients won’t tell you. They too have moments where they think, “This is INSANE!!! I do not have POTS. How can this be?” I have these moments about three times a month. Usually, I start by doing something physical. Two nights ago, I decided this was all craziness. So, at 9:15 I plopped myself on my rower and decided I was going to do fifty rows. Simple right? By row eight I was lightheaded and incredibly dizzy. I had to lay down and it took about thirty minutes to recover. Are you kidding me? I ran a half marathon before but eight rows nearly knocked me out?!?!?
This week I came across the above pics. Immediately I thought, “Will I ever be that girl again? Will I ever be able to run freely in the waves and not have to consider each movement before I make it? Will there come a time I can burn these compression hose and walk without turning purple and going numb?” Even in public I am squeezing my legs together to keep the blood flowing while I am standing. I calculate how far I will be walking to decide if the wheelchair is necessary. I know my surroundings and quickly learn where the closest available seating is and where the bathroom is located. None of this is visible, but it is the norm for myself and other POTSIES. Is it embarrassing at times because I just cannot make my body do what it is supposed to do? Yes! It’s mentally and physically debilitating. This is why it is imperative to have a strong support system. This is not a battle that is meant to be fought alone, and yet for many that is their reality. Some choose solitude because they feel unable to express the ongoing battle within their bodies. Others feel isolated because they cannot do what they once were able to do. I on the other hand, hopped out of my introverted turtle shell and haven’t shut my mouth since. But, I know I am not the norm.
Small feats are large victories for us. What seems mundane and ordinary is extraordinary. I have learned the little things are the big things. Those moments that seem insignificant are the memories we cherish for a lifetime if we allow ourselves the time to stop and embrace the present. I consider myself blessed to have learned what matters most. It’s not the moments we try to manufacture or predict, but rather those moments when you least expect it. Here are photos of my daily POTS life. Some of these moments have become etched in my heart and others I would love to forget. Either way, I can only control my attitude in the midst of this illness. I cannot control what my body does most days, but I can actively pursue life in the midst of the storm. I cannot control how others feel about it. I can only be the best version (although quite broken) of me possible.
I was so proud to be able to swim with my children after many months of bed rest.
POTS patients cannot regulate their body temperature. So we live in many layers. And apparently have quite the attitude some days.
Hospital visits and fluids are just a part of POTS life.
This was just a few days after being released from the hospital. I couldn’t walk well, but it was Christmas morning and I was determined to be there with my children.
It’s so important to keep a good sense of humor! Oxygen therapy, Retail therapy, and an exercise video I made in jest.
I was so proud to help decorate the tacky downstairs tree. Dressed as a POTS patient for Halloween with water and salt in my hand and pots hanging around my neck. I also was able to enjoy the Christmas Parade with noise silencing earphones.
I live my life to the fullest, but after any event like this…I require days of rest.
I was so proud to get to go back to school shopping with my kids. AND that day was also the first time I had been in a restaurant in a year! But I still celebrated when school started back. Hello ME time!
I can be outside if there is no heat. But I have to be covered, wear compression hose and have a seat close by.
And I am currently in the process of dental implants. Not POTS friendly. That x-ray was jarring to see. Do those titanium implants make my cheeks look fat???
I made it to my daughter’s Awards Day and she was SOOO proud. I hate awards day! But, I love being able to support her. Hunter is my teenager and we do our facial regimens every night together. It’s our bonding time! Even though I have to make him do it. I FINALLY found a skincare product that cleared up my flaking and rashes from POTS! Did I mention how much I hate awards day?
And finally, I still try and get my nails done and my sweet friend comes to my house to keep my roots looking bomb! A girl needs to keep some semblance of normalcy!
I want to close with this. If you have POTS don’t spend your life waiting to get better. Live the life you have been given to the fullest. It may not look like you expected, but guess what? You may find something deep within yourself you never knew was there. For those living with a POTSIE, your patience and love are two of the greatest gifts we could receive. Many of us have spent years of our lives trying to find a name for our condition, and once we do, we are very excited. But, it takes time, so much time, to see improvement. We know you are frustrated and sad at times. We carry a burden daily being the “sick” one. We will happily embrace health if given the opportunity. But until then, embrace us and we will return the embrace as well.