It’s the ‘Lil Things..

So we’re entering February. I had vowed to a “New Year…New Me.” I wanted to find a sense of self worth, find my happiness, and seek help through a local support group for depression and anxiety.

Thanks to a great childhood friend of mine, I can proudly say I attended my first meeting Tuesday, January 19th. I’m not going to lie, a huge part of me was terrified. As I was walked up to the door, I turned and looked at my truck, and for a split second, I contemplated just going home.

I braced myself, took a deep breath and continued to walk in.

As soon as I made it inside, the therapist came towards the door and asked, “Can I help you? ” (Mind you, group therapy is held in a church). So there I am, standing dead still with my turquoise pixie cut and tattoos thinking “Oh my God! What do I say?!” My voice shook and he asked me again this time he (I come to find out his name is Tim– “Tim the Therapist”) smiled.

I was really nervous and finally managed to say “I’m looking for the support group,” which felt like the longest six-word-sentence I’d ever said in my life. He smiled again and said “Awesome! The library is this way.”

We walk into the library and low and behold…I’m the FIRST ONE THERE! I wanted to just fade off into a corner and cry, but I didn’t. I nervously took my seat; nervously, but I still took it! He welcomed me and said group sessions had been kind of small lately but that he was sure more people would show up. So again, I wait there not knowing who’s going to walk through the door or what they will think of the turquoise-haired lady with tattoos.

Slowly, the other members start to trickle in. There were seven of us in the group, six women and one man. I was the youngest one in group which I am used to. I’m always the youngest at appointments, testing, and procedures. We did our opening exercise, which was sitting, planting our feet firmly on the ground, take a deep cleansing breath, holding it, and then a SLOOOW exhale! We had to do that three times. (Oh my God, for those of you who know how breathing affects us POTSIES, please appreciate how scared I was going that I was going to end up passing out, flopping like a fish, or having the pleasure of showing everyone what a POTS episode looks like on my first night). We all took turns introducing ourselves and saying one thing we were grateful for.

Luckily for me, I was the last one to go; so I practiced it a million times in my head, all while trying to listen very intently to what everyone was saying. Time flew and suddenly
the man next to me was already taking his turn.

As he sat there in his electric wheelchair with the biggest smile on his face, he stuttered,

“I am thankful for yellow…I am thankful for the sunshine,  because when I’m feeling down, I know I can just look up and soak it in. Even if it’s night time, all I have to do is think of yellow…and for that I am truly happy!”

It was in that exact moment that I felt all my problems were petty and insignificant. I proceed to introduce myself and said what I was thankful for. “I’m thankful that yesterday I was able to do the dishes, make spaghetti, do five loads of laundry, and still make it out of bed today to pick up my daughters from school. I’m thankful to make it here to group.”

The look on everyone’s face was that of utter confusion. I quickly explained that I have been chronically ill for almost five years, but didn’t give much details. I honestly didn’t want the whole focus to shift solely on me, as I already have deeply-rooted issues of people focusing on me; it’s personal stuff that stems from childhood trauma.

Fast forward to Monday, January 25th. I had a doctor’s appointment with my autonomic neurologist. Previously, I was hospitalized for three days the first week of January for EEG video testing. This was what I refer to as “Hell Week,” even though it was only three days. They had me sleep deprived, off my anxiety meds, and every few hours they would come in and do that awful strobe light testing. My body would automatically go into fight or flight response due to my POTS, this would trigger my non-epileptic seizures, which then turned into full body muscle cramps, confusion, extreme migraines, and vomiting.

On day three, the attending neurologist walks in and questions me in a very sarcastic manner. “Has Dr. Ratna Sanka ever seen these episodes?” My husband stepped in to my defense and said, “Yes! They’re horrible, and yes, her doctor has seen them. These are mild in comparison to what she goes through!” I was released and told to follow up with my autonomic neurologist. Now we fast forward back to January 25th.

So there I am, waiting to be seen, not knowing what to expect. She walks in and asks how I am and she starts to go over all the data and records. She said, “Well, first of all we know you have POTS and dysautonomia. We know that there is no cure and that you will pretty much live with this for the rest of your life. On the bright side, we can help you try and manage your symptoms, not just with medications but with coping skills. What you have is very real and very scary because you don’t know exactly what your body will do next. That being said, there is hope! Not a cure, but at least there’s hope.”

Throughout the almost five years of being chronically ill, validation is not a feeling I am able to experience often. This doctor understands that POTS and dysautonomia is a life-altering condition. We talked about medicine dosage changes and also getting me into a local cardiac rehabilitation center. When I start, it will be twice a week for 12 weeks. For my safety, I will be hooked up to monitors at all times and will work with skilled nurses. Cardiac rehabilitation will hopefully get my heart a bit stronger and help it function better, rather than having it work over time every second of every day.

Since being chronically ill, most of the time, my illness consumes not just my energy, but also my time. My husband and I have two beautiful daughters who mean the world to us. Lately life has been monotonous and we’ve been living our lives in the simplest routines, focusing mainly on our daughters and helping them with school work.

One day, completely out of the blue our 14-year-old sits down and talks to me. She said, “Mom, I really think you and dad need a date night.” I just giggled and said “Date night? I can barely make it out of the house to do simple things like picking you and your sister up from school, taking daddy to and from work, doctor’s appointments, short grocery trips, and infusions… How will dad and I have a date night, silly?” She quickly answers, “You don’t need to leave home, you can drop us off at grandma’s and rent a movie or I could watch sister and you all could go for a drive along the bay!” I was proud and sad at all the same time. I thought to myself, “If these are concerns that our 14-year-old is having, does she think her parents relationship is in trouble? Does she worry that my chronic illness will tear her dad and I apart?” I assured her we were fine, but completely agreed that daddy and I needed a “date night” of some sorts.

Luckily for my husband and I, our 14-year-old was asked out to the movies last Friday. Much to our surprise, there was a carnival right next to the movies. My eyes lit up, but I said nothing. Our daughter quickly said, “You and dad should go walk around the carnival a bit! Sister is with grandma right now, GO HAVE FUN!”

I looked at my husband and we both smiled so… off to the carnival it was!

We started to walk around and the noises and lights were a bit overwhelming to me, but I decided to push through it. We’re walking and talking about the good ole days and our dating years. The both of us couldn’t help but grin from ear-to-ear. As we were walking, we come across THE AVALANCHE! Again we both look at each other and smile. I ask him, “Please?! Just this one ride?!” So there we are, standing in a sea of people, weighing the pros and cons of me actually getting on this ride. I know better than to get on rides having POTS and dysautonomia, but I threw caution out the window and lived for that moment. After much persuading I managed to convince my husband to ride THE AVALANCHE. The ride doesn’t do any wild flips or spins, it simply goes around in circles, forwards and backwards. It’s not very fast, but might as well be warp speed for a POTSY!

We got on the ride and we begin to spin, all the while I’m thinking “Oh my God; what have I done?!” But,  I will never lead on. I’m sitting there with my husband’s arm wrapped around me like a bunch of teenagers on a first date. As the ride begins to spin faster, I begin to laugh uncontrollably and get the worse case of giggles I’ve had in so long. We look at each other and we’re both just soaking up that moment like nothing in the world matters but us, right there in that space and time. The ride comes to a stop, we give each other a well deserved high five and a huge hug. He gets off the ride first, then I attempt to get out.

It is in that moment I realized why POTSIES shouldn’t ride carnival rides.

As bad as it was feeling dizzy and wobbly, I’m actually really happy we were able to share that moment. Because it was in that moment we remembered that we were a couple, married and in love, not just a couple who had been robbed of any sense of normalcy due to my chronic illness.

My words of advice is love the little things, because it’s those little things that remind us of what we think we’ve lost, but in reality, are always there.

All we have to do is make the time for the little things, at least now and then, because before you know it, they’re all gone.

Thoughts on Mari’s post? What little things do fellow “POTSIES” hold dear? Leave a comment below!

About the Author: Mari is a new Patient Worthy Contributor. Keep an eye out for more posts by her and check out her facebook page here.