Thursday, September 30, 2021

Four Go on a Day Trip... All Have Invisible Illnesses... Producing A Day to Remember

For years I have wanted to visit the Georgia Aquarium. Due to a series of circumstances, earlier this week I was able to finally do so with some of the people I love most in my life - my boyfriend, my daughter, and her fiance'. 

I won't say who has what, note that some of these conditions are dealt with by more than one person, and know that I might miss some of the diagnoses, but between the four of us we deal with...

- MDD (major depressive disorder)

- Bipolar Disorder Type 2

- Dysautonomia/POTS

- Still's Disease (similar to Rheumatoid Arthritis)

- Anxiety issues/various phobias/PTSD

- Addiction

- mobility issues

- Migraines/headaches

- Osteoarthritis

- Fibromyalgia

- Joint Hypermobility Syndrome

- Sjögren's Syndrome

- Sleep issues/Insomnia/Sleep Apnea/Narcolepsy

- ADHD

- Dissociative Identity Disorder

Like I said, I might have missed some. But needless to say, going on a trip, even a day trip, with the four of us is, um, an adventure.

For one thing, because any one of us might need it at any time, we brought a wheelchair, knowing there would be a lot of walking throughout the day. One of us has a service dog, so he came along - with all of his supplies. I brought one of my cameras though it turned out that it just wasn't worth it to try to take pictures with it with everything else going on, so I just used my phone camera instead (the quality wasn't as good but it was so much easier). 

Though none of us are hearing impaired, between issues like ADHD, one having a bad headache, and things like brain fog that all of us have at times, communication was difficult at times. The fact that most of the aquarium was loud didn't help. Background music in almost every area plus all of the people talking, or at least trying to talk, over the music made it hard.

Speaking of the noise, the aquarium was also way overstimulating. COVID has made all four of us more sensitive to light, noise, and crowds. This aquarium had a lot going on both visually and auditorially and it was just too much for our minds after living in quarantine and reduced capacity situations for so long. Actually, it would have been difficult before COVID, but getting used to more times of quiet and isolation made it stand out more. In fact, I ended up using the noise-isolating earbuds I have for shooting concerts.

COVID didn't help the mobility issues that we all have in various forms. Even though all four of us have tried to get out and exercise some through the past year, it still is much less than we all worked full-time jobs and were doing something outside of the house every day.

We did pretty well, considering. We took turns pushing and riding in the wheelchair as needed. We took breaks when the service dog got overwhelmed. We took breaks when we got overwhelmed. We took our time at the exhibits and sat and chilled at some of the big tanks, just watching the aquatic life. 

But we also had a few episodes and meltdowns. The entire day didn't go "smoothly." I'm not going to list specifics, but one time I noticed a sensory isolation booth geared for those with autism, and I almost jumped in there for just a few minutes to get away from all of the stimulation and honestly, to get away from those people that I love so much.

I would love to go back. To be perfectly honest, I'd love to go back completely by myself... to take time taking photos at each exhibit and to rest whenever and for however long I needed without worrying about anyone else. Dealing with the stimulation of the environment is enough without trying to take care of others.

However, for every difficult moment, there were many more wonderful ones. I loved hearing my daughter's laugh at some of the animals. It was wonderful watching her interact with the woman she loves. Observing the wonder in the service dog's eyes around the low-to-the-ground tanks was something I'll never forget. And finally, getting to spend a day with the love of my life outside of our regular routines was priceless.

A quick piece of advice before I end... even though there's no way you'll be able to predict every scenario (like I really thought I could use my good camera and ended up lugging it around for nothing), planning for any possible contingency helps. Having the wheelchair, the service dog, carrying water (even though technically we weren't supposed to), and having the earbuds made a big difference. I can't even imagine how hard the day would have been without all of that. 

I hope that this account helps someone not feel so alone when a day like this doesn't go smoothly. A lot of times the expectation of walking around all smiles, like in a commercial, sets us up for failure. A lot of times those of us with invisible illnesses won't use aids like a wheelchair, fearing what others might think. A lot of times, in fact, probably most of the time, the day won't go as planned.

But it's so worth it. The memories I have of this particular day are worth all of the hassles. And even though my family has a lot of issues, each one is worth it.

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