In 2017 I realized that I reached a point in my life where I realized that I wasn't getting any better. It had been 8 years and even though I had more information about what was going on, I was steadily getting worse. I knew that I needed help but I was afraid to admit it and not interested in dealing with a whole new set of circumstances but something had to give.
Having an Invisible Disability is like looking through a two way mirror to me. On one side I can let you see what I only want you to see. However, there are times when you can be on the other side and see right through me. On a good day, if I was to stand before you there would be no indication that I have any issues whatsoever. However, on a bad day you could see my fragility on full display. It works in my favor and against me almost simultaneously. I don't look like anything is amiss at all but just beneath my painstakingly applied makeup and put together style, I am suffering..daily.
I would have days so bad that I needed to get in the mobile carts out front of grocery stores to get anything done. I admit that I felt a bit embarrassed because I needed it because people would stare at me. Not just glance and look away. I mean people stared. So far I never needed to explain or educate ones on my illness...yet. I just hope to be in my right mind if the day comes. I ignore the stares and just go along with my shopping like everyone else. There were times when I am alone and there are ones when I am with my children. They would encourage me and remind me that it was okay to use the scooter if I needed it. That gave me strength. Pride is a horrible to have because it holds you back from humility.
As I saw the need for an aid increase, I pondered the need of getting a Disability Placard. I eventually decided to get one in 2017, as I started out typing, because of my uncontrolled resting heart rate. It would go 140-150 bpm often and at that time we didn't know why. Turns out that it was my beloved Amitriptyline (sigh). During this time I felt like a person that had congestive heart failure, though I didn't. I broke down and decided to download the form from my Department of Motor Vehicles and take it in to my doctor. He filled it out for a temporary one which would give me 5 or 6 months and it was red instead of blue. I started to hang it reluctantly at first because I read stories of people having mean things said to them or nasty notes placed on their car because of their Invisible Disability. They didn't seem to need it to the untrained eye of ignorance. Still I used it and each time it got better. I eventually progressed to a blue one and it will be my companion until 2022.
My attitude towards it has changed because I whip that thing out anytime anywhere. I pull right up to the front of an establishment, if needed, and I park and display my placard. I haven't named it, maybe I'll call it Percy. I name stuff. People still look and I don't mind because if someone is bold enough to ask I will be kind enough to answer. I understand the curiosity becuase I have looked at ones and wondered in a glance, "how, why, when and what happened?", to said person but kept going about my business. I occasionally get the odd jeer about my perceived preferential parking and I always say, " If they want my parking they can take all that comes along with it". The usually silences the remarks.
My next frontier is the actual ownership of a personal mobility aid. I realize that I really can't leave my house and walk consistently without needing to rest after more than an hour or an hour and a half of activity. That is usually when I break out in a serious sweat, my heart starts to beat faster and funny, my legs tingle and I get irritable. These are precursors to my faint, if I don't heed their warning. This stinks because I would a person that loved to be outside doing things and I can't. I hate it. So I voiced to my children that I wanted to get a walker with a seat and brakes, just in case I go rolling down the street. Again, my rocks didn't flinch. They were interested in looking for a few models with me. I admit again that I was testing the waters because that signifies that I am really disabled. It is one thing to slap a placard in the window but it is another to flop out ole Bessy to scoot around the mall. I think I might name her Bessy. So this is not a decision to be take lightly.
I did a lot of thinking in 2017 and now I think I am ready to act on it. That trip to the National Harbor really convinced me that I need to do something. I am not brave in the least, I am in a place of acceptance. Also, I need to make the best of my new normal. So this year I am getting a walker with a seat. Something collapsable and light that I can maneuver when I need it. This will also help dispel my personal irritation of having to use an Electronic Convenience Vehicle (ECV) when I go to amusement parks. I want to take my children to Hershey Park and they have those devices there. I am seriously looking in to it because, frankly, it is needful. No need for me to drive all that way and pass out after 60 minutes in the park. The fight for my rights is not always external. It is often internal with the monster of Pride that won't let me be great.
One day at a time.
Nicole