Wow, my Facebook feed is all about Dysautonomia today! I posted a few things about Dysautonomia Awareness Month and got some good feedback. After all I went through to get diagnosed, I want to spread awareness so that others can get diagnosed faster! And I’m not alone- even Niagra Falls has been lit up in turquoise! I am all about making noise for turquoise this October! #dyssupport #DysautonomiaAwareness #DysautonomiaAwarenessMonth! #MakeNoiseForTurquoise
Today, I really wanted to bring it. My hair is looking more and more turquoise (if you squint and pretend like it’s not so blue, lol!). I put on turquoise make up, my new mermaid leggings (they’re supposed to be turquoise), and a big smile. Unfortunately, my wheelchair doesn’t really fit into my husband’s convertible, so my husband and I started with lunch at a place accessible with my cane/stool.
I wanted to get out more, so when my dad got back, my husband and I asked to borrow his car. My dad let me know that my mom reports she can not lift my wheelchair. Indeed, when she and I had tried it out, she was lifting it awkwardly and using her back instead of her legs. I hoped she could learn to lift it properly, but it seems like they were looking for alternative options. I was super bummed to hear that because the whole reason we bought this ultra lightweight Zinger chair instead of a slightly heavier model was so that I could use it when she drives me.
Now that I have had a taste of independence, I’m willing to fight for it. So, today, I practiced lifting my Zinger chair myself and loading and unloading it from my dad’s car. My husband spotted for me and I used my cane/stool to sit on. I’m not going to sugar coat it. It was very difficult for me. My husband is so great about supporting me and helping me to help myself. I am determined to be able to use this chair and will do what it takes!
After some practice, my husband and I took my dad’s car to another mall. I was doing much better with the zinger chair today and I am really getting the hang of it! I was going into stores and looking around. For the most part, people were really kind, too. Three people complimented my mermaid leggings! I did find out that elevators are very popular with strollers and that waiting for space involves some patience. Oh, life is truly teaching me more and more about patience everyday!
The icing on the cake was a big splurge at Sephora. I hadn’t been in a make up store since before the wedding and really haven’t had energy to wear much makeup. It was so fun to go in and see the colors. I went nuts with buying turquoise eye makeup for this month. I even gave a poor sales person my whole speech about turquoise and Dysautonomia Awareness month after she asked about my favorite color. And my husband was so patient with me and stood in line for me since my chair was not likely to fit.
After hitting a few stores, I did start to fatigue and we decided to leave. We got out to the car and I had the hardest time loading the chair in, but I insisted. I was finally able to do it and was so satisfied to have succeeded! I was a little deflated after I went to sit in the passenger seat and a kind stranger handed me my cane/stool that was leaning next to me. I overwhelming appreciate random acts of kindness, but I was shooting for independence. In fact, at least three people helped me to get in and out of a restroom today and I really did need that help. Still, if I can do something myself, I want to try to. I’m going to just keep trying to do as much as I can on my own, assert my desire to try to do things on my own when needed, and show gratitude to those who try to help me, either way.
Also, now that I have wheels, I think I will get a Disneyland pass! My sister, dad, both bros-in-law, and lots of other people have passes. I could get a ride there with my dad or sister who go all the time anyway. The big worry is that I tire after an hour. Where can I lie down at Disneyland?! If my companions are willing to deal with my fatigue, it may even help me build up some endurance. My husband and I are considering a test run tomorrow. I hope it works out, especially since my bestie and a bunch of other are meeting up there on Monday. Me, socializing? Oh, it sounds pretty wondrous and magical!
It has been so great to just get out again and get more than a few yards from the car without help. I’m really excited to be out more. And I won’t take it for granted. I’m going to use my time out and about not only to enjoy life, but also to raise awareness!