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Out & About with Dysautonomia

July 2, 2018

 

 

If I have a choice, I would like to live in a place where it was fall weather all year round. The season has it's warm days with cool evenings. The air is crisp and clean and I could choose to wear a jacket or not. It is my favorite season by far! However, I happen to live in a place with all four seasons, some lasting longer than others. Preferences aside, it is currently summer where I am and I'm determined to cope the best way I can with my Dysautonomia. 

 

When I look back over the last few years I have basically missed out on Summer. So much so that I really don't have summer clothes. I am usually home sick because I didn't realize that I was heat intolerant or even had Dysautonomia. I would literally miss the entire few months each year. That was until my research provided me with some answers and led me to a doctor and a diagnosis. 

I have decided to share a few outings I have this Summer with you and share any tips that I have to survive this heat and make the most of the sunlight because we all need more Vitamin D...right? 

 

 

 

My children and I wanted to get out and enjoy the sunshine but that particular day was HOT! That is a no go for most people and for me it was bad but I wanted to go out and just move and change my scenery a bit. We did live about 30 minutes from the National Harbor in Oxon Hill, MD so we decided to go for a drive after 4 pm. The traffic was light for a Saturday afternoon and we got there without incident. I didn't bother to look for street parking because the Parking Police are serious and I didn't feel like running down the street to re-feed the meter so we opted for a parking lot near the Marriott. 

 

 

The National Harbor has continued to evolve since with moved here over 10 years ago. Now it has Capitol Wheel which looks like the London Eye, a huge casino, majestic town homes, hotels, great eats and tons of shopping. I miss the simplicity sometimes but the activity was a great distraction because I didn't feel like I was actually walking around as much. My daily issue, aside from my problem with heat is walking. Period. I will run out of steam and not be able to go any further. I felt like Link in Skyward Sword. He would run until he was bent over huffing and puffing because his stamina depleted. However, instead of running with me it is just plain walking and it didn't help me much that the area is a bit hilly. Nonetheless, we walked from the Gaylord Hotel all the way down to the end of one Pier overlooking the Potomac River. The breeze on the pier was refreshing because it took away all of my weariness and recharged me a bit. The view there was amazing and from that point you can see the planes going in to Reagan Airport and cars driving over Woodrow Wilson Bridge to Virginia.

   

 

Even though this whole part was downhill, I was already tired but I still wanted to keep going. After we rested on a bench for a while in the breeze coming off of the river, we went off in search of more things to do. For some reason my son wanted to walk up ALL the stairs and I went with him. I still try to prove to myself that I can do what I want even though my blood vessels chuckle at me because they know they are not about to move all the blood I need to keep going. We eventually returned to that car in just under two hours though I felt that I was there all afternoon. We rode home and I felt bad that we had to leave so soon but my children were content. They bring me so much joy because they know my limitations and they are fine with it. They really embraced my new normal and I love them for their unconditional support.

 

My excursion was short but it was rewarding. We ventured out as a family and made a few more memories. Instead of being disappointed of what I can't do, I just make the best of what I can. It is quality over quantity. It looked like we had fun right?

 

One day at a time.

 

Nicole

 

 

 

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