Friday, October 15, 2021

Frustration

Sometimes I feel like I'm making headway against all of these invisible illnesses... and sometimes I feel extremely defeated by them.

Today is one of the days I feel so defeated. 

In the past, I was able to juggle so many parts of my life - mother, daughter, volunteer, employee, pet owner, photographer, musician... I could go on and on. The vast majority of the time I could keep all of this in the air and didn't miss a beat.

Of course, there were the occasional missteps - forgetting about an appointment, being late to an event because I went the wrong way, getting behind on cleaning or grocery shopping - but overall, I felt I had a handle on life.

This ability to handle so much was still the norm even with a few invisible illnesses. For example, I've been dealing with major depression and anxiety as long as I can remember. Both would get in the way at times but usually I was able to keep functioning in spite of them.

But as I've gotten older, more conditions have piled on. Some I think I've had for years but weren't diagnosed until recently. Some are new. What's especially fun about this is as I get older, those undiagnosed conditions get worse and new ones continue to show up.

Sometimes I wonder if it's the treatments that are making me worse - like the many medications I take for all these conditions. Sometimes I wonder if it's all due to age. I also wonder if it's the mentality - when I didn't know I had a certain condition, I think I could deny the symptoms more than having it diagnosed. 

What happened today could happen to anyone. I keep telling myself that to hopefully make myself feel better. It's not working.

It was a simple mistake. I bought two new pairs of glasses for different specialized functions and I got them from different companies. One company messed them up and I had to return them.

This is where the problem lay... I have been so scattered and overwhelmed with trying to keep those balls in the air lately that I dropped one - and returned the working pair instead of the bad pair. 

Since I rarely use these glasses, I didn't notice until it was too late and there was no way to retrieve the ones I sent by mistake. 

I'm beating myself up for not checking closer, for not slowing down for tasks like that so I don't mess them up. 

And, like I said, this could have happened to anyone. Accidents happen. People make mistakes all the time.  I'm human and invisible illnesses or not, I won't do everything just right.

I console myself that at least I don't rely on these glasses. I can live without them. I might even be able to get another pair pretty cheaply to replace them (though they won't be the quality these were). 

But what worries me is how much I'm forgetting lately. I'm so much more scattered and ADHD-like (haven't been diagnosed but it's highly suspected) the past few years. It's so difficult to focus and complete one task without another infringing on it, and sometimes I don't make it back to the first task.

I'm concerned I'll miss a deadline at work, or that I'll miss an appointment with a client, or that I'll make a major mistake like not managing my parents' meds properly. 

It's scary - and I don't know what to do about it. I make list after list. I try to stay organized. I work to keep the stuff that tries to overcome my space contained.

It's like I'm driving at 90mph and I know that there could be a speed trap coming up but I no matter what I do, I can't slow down. 

How the h*ll do I put on the brakes when there are times it's seems I've forgotten where the break pedal is?


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.

Sunday, September 19, 2021

Disappointment

As I'm writing this, I'm in the media room at Barber Motorsports Park. I'm here to photograph a Motorsports chaplain for an article I wrote about him and while I'm here, I also have been able to get some decent photos of the practices.

I should be incredibly thankful. I mean, how many photographers my age ever get these kinds of opportunities? A few months ago, I wasn't able to be in the media room, but I was able to shoot trackside for an Indy race - and one spot I shot from was about 10-15 feet from the cars as they passed at approximately 150 mph. 

But yet I'm disappointed. This weekend has had horrible rain. Friday (practice day) was wet but it only sprinkled some - no torrential rain. 

Yesterday (Saturday) the real rain started. I shot a foot race in the morning and even though I took most of my photos from the car, I still got soaked. I ended up using my poncho as a barrier to protect the electronics in my door (the locks and window controls). Eventually, the poncho fell into a puddle and got soaked, inside and out. Between that and the fact that the rain was supposed to keep up through the afternoon, we opted out for day two of the racing weekend.

Not going Saturday afternoon meant that there was less of a chance that I would get the specific photo I had hoped to use in my article. You see, for a big race like this, the chaplain prays with the riders before each race. He made arrangements for me to go out and take pics of him doing so - on the track where the riders line up for the race start. It could be a once-in-a-lifetime activity... and the rain has prevented it for every race so far today, except the one I missed because of a miscommunication with him about where to meet.

Because he doesn't have time to pray with the riders for "quick starts" and those aren't changed until close to the time for the race, I can't go anywhere else and shoot - there's not enough time. So today I haven't been able to shoot the action OR get the photo I wanted.

I'm so upset and I really shouldn't be... It's amazing that I had a chance to "live" in the media center at Barber Racetrack for a big race weekend; it's really cool that I already was able to watch a press conference after a race; I did get some good photos and it's not like a needed more than a couple for my portfolio; and I was able to get a photo that I can use for the article, even if I don't get the one I came for.

I keep repeating to myself the Serenity Prayer - and reminding myself that the rain is definitely something I cannot change. I am having a hard time not beating myself up for coming yesterday afternoon as well as for not getting to the prayer time this morning - but the forecast showed that it was supposed to be nicer today so I just knew that I would be able to get what I needed.

Honestly, there are still two races to go. The forecast is showing the heavy rain continuing, but there's always the small chance that one of them will do a regular start and I'll still get to get what I came for.

But even if I don't, it ultimately doesn't matter. Like I said, I can't control the weather; I can't control the timing of making the calls about quick starts; I can't control that there's not enough time to find a place to shoot in between races and still be available for the possibility of catching a prayer. 

All I can do is try my best to control my disappointment and hopefully focus on the positive... and remember that life isn't about getting what you want all of the time.

Update:

Well, there was a quick start for the next to last race so that one was out. Then the weather started clearing up. I was very hopeful that the last race (which was the highest level group), would have a long start and I could get that photo.

I got ready and started to head down to the track when I got a call. It was a woman so I was taken aback at first. She introduced herself as the chaplain's wife and told me that there was a medical emergency with one of those involved with the race and that he might have to go to the hospital with him. I told her that of course, it was okay as that's the most important part of his job. But after getting off the phone, my true emotions emerged.

I couldn't believe this happened. Really? I was torn. I hate to say it but my immediate response was complete disappointment and sadness for the missed opportunity. Then it quickly changed into compassion for whoever it was that had the medical issue as well as for the chaplain, because he wanted that photo as much as I did.

But when I got off the phone all I wanted to do was cry. Thankfully, I was out of the media center when I got the news so I didn't have to stay completely composed. I was also mad at myself, as I didn't go to the race on Saturday afternoon and I realized I should have.

Honestly, though, who would have predicted all this? The miscommunication in the morning, the ongoing rain when it hadn't been forecast in the afternoon, the medical emergency? 

However, it all changed with a call from my boyfriend and photography partner. He found out that we could go into the pit area and shoot with the credentials we already had. We had been told we could during a practice day but then got in trouble when we tried to do so, so we assumed it was the same on race day. 

So even though I didn't get that photo I really wanted, I did get to shoot from the "hot pit" area, a place that you usually have to have a special pass to be in. Because I was in the media center most of the afternoon, I got to see and shoot a few more press conferences. I also got to rest, which, because I couldn't sleep much at all the night before, was much needed before that last shoot (I wouldn't have made it through that last race otherwise). 

I'm planning to try to find out how the medical emergency person is doing and I'll try to remember to do another update about that. So more later on this ongoing weekend.