Home Fibromyalgia Strategies 2020-The Year That Wasn’t

2020-The Year That Wasn’t

by Cathy English

Just an FYI. This post is all about me. If that’s not what you are looking for, this post is probably one you’ll want to skip.

Living with fibromyalgia can sometimes be a real roller-coaster. You may begin the day filled with energy and ideas, with projects lined up just waiting for attention. And then, by breakfast, you’re dragging yourself around wondering how you’re going to manage getting dressed and even if it’s worth bothering to dress at all!

But what if your whole year works out that way?

That sums up 2020 for me. It was so enormous it spilled backward over into the end of 2019 and forward into the beginning of 2021. It was so filled with “stuff” (to put it nicely) it couldn’t be contained in a 12-month period.

So, I’m going to call it…

“The Year that Wasn’t…”

Dreamlike image of a roller coaster.

For starters, it wasn’t fun…

It started for me in the winter of 2019, which you’ll notice was when I made my last post. For me, when fibro gets a good grip on me, it really affects my emotions and mood. I’m not a doctor…I don’t even play one on TV…but I probably would diagnose myself with depression if I was a doctor. And when the Big D gets ahold of me, it won’t let go for love nor money.

So, I found myself plodding through the motions, doing what absolutely needed to be done, and feeling like a failure because I couldn’t find enough leftover energy to continue the blog. I wasn’t giving up, I just couldn’t find any more of me to give.

This carried on through the holidays. I enjoyed spending time with my family, but found myself struggling with a brain fog so thick I was actually making mistakes that were sometimes dangerous.

Something had to give…

It might seem counter-intuitive, but I decided to stop taking my last regular prescription medication, Trazodone, on December 28, 2019. I know you may be thinking I was crazy for doing so, and you’re probably right, but I really felt it wasn’t working anymore and I was so far down in the hole, I didn’t think it could get much worse. So, I decided to stop taking it. I had only been on a very low dose to begin with, but I had been taking it for over 10 years.

Withdrawals from it were the worst I’d ever experienced physically. I didn’t sleep much for about 4 or 5 days, and I itched like crazy! But gradually, I began to feel better, and more importantly, I began to think more clearly. I won’t lie, it was incredibly hard, and I suffered with lingering symptoms of withdrawal for MONTHS! If it hadn’t been so bad, I might have been tempted to start taking it again, but I don’t ever want to go through those withdrawals again!

Pills with a blocking symbol across the image to symbolize "No more pills."

And so, 2020 began with all of this residual junk of withdrawal, depression and feeling worse than I had in years.

It was The Year that Wasn’t…Easy.

Exhausted woman asleep on her keyboard

And then it got worse…

In early January, I took my second shingles vaccine shot. I had felt pretty bad after the first vaccine dose the previous November, but this one was much, much worse. I ran fever of about 101 degrees for 4 days. I was really and unusually sick. I’m glad that was the final dose, because I don’t think I would have survived another one.

As I was just getting over that, in late January, my mother was scheduled for hip replacement surgery and I planned to help her get settled at home after her brief couple of weeks in a rehab facility.

You know how the saying goes…The best laid plans…?

I won’t go into all the details, but she ended up going straight home from the hospital and my 4-day trip turned into a 5-weeks long stay as her caregiver. She had a lot of difficulty, and we were up and down several times a night, so I didn’t sleep more than a couple of hours at a stretch for most of that time. I literally had flashbacks to the days of having two babies in diapers!

Between working remotely on my regular website/marketing business during the day and staying up all night helping her, I was a mess.

We watched as the world began to shut down because of COVID-19 and wondered if it would affect us, too. But, we were incredibly thankful that Mom had come straight home, because care and rehab centers were locking down. At least we could be together during that scary time.

I finally returned to my own home on February 28th, so exhausted I could barely function.

And then it got worse again…COVID arrived in the United States.

Microscopic image of the COVID-19 virus

My uncle passed away in early March. My husband and I went to the funeral, and it was the last “normal” gathering we attended. Upon returning home, we both got pretty sick with some sort of respiratory illness. We wondered idly if we might have contracted COVID, but we weren’t sick enough to go to the doctor, with all the warnings to just stay home, so we just rode it out. Subsequent testing later in the year didn’t show any COVID antibodies, so it must have just been a nasty respiratory infection.

Anyway, by this time I was staggering through my days, punch-drunk with exhaustion.

My business, however, was thriving! Because everyone was finding themselves trapped at home, with their offices and stores closed, the Internet and social media became the main way my clients communicated with customers. So, I stayed extremely busy with updating website pages and creating social media posts for various platforms. Thankfully I never took a financial hit during the lockdowns, like so many others did. I only say this as an explanation as to why I couldn’t find any more time or energy to get back to the blog.

As the summer and fall progressed, I continued working hard on my business, taking care of my home, and wondering when I would ever get back to blogging.

I finally stopped struggling with withdrawal symptoms from quitting the Trazodone in August. Yes…it really was that bad!

Gradually, throughout the fall and winter, I began to feel like myself again. The depression has lifted, for now. And I’m handling everything without the prescription medication. Maybe not as easily, but certainly with a clearer head.

In the interest of full disclosure, just a little more medical info…At my request, in October, my doctor prescribed a few capsules a month of Temazepam, to use when I travel, to help me sleep when in an unfamiliar environment. (This was of course after he finished scolding me for stopping the Trazodone without consulting him.) I have only had to take the Temazepam a few times. I used to take it a lot years ago, but my previous doctor wouldn’t continue to prescribe it on a regular basis when studies connected long-term use to increased development of forms of dementia.

But, it works beautifully for me when I absolutely need a decent night’s sleep.

Unfortunately, when I take it, I will have a few bad days after not taking it once I get home. I get very anxious. So…I’m not really sure it’s worth taking it at all, but sometimes I just have to…for instance when I’m going to be driving several hundred miles the next day. Just one more thing to think about, I guess…whether to take it or not…

2020 continued, but it still wasn’t…filled with activities, either.

I’m usually a very outgoing person, and being confined at home without travel, meetings and activities was tough, as I know it was for many of you. Thankfully, here in Texas, things didn’t lock down as tight as other places did.

But, because I try to check on my parents at least once a month, which involves a 4-day trip, I spent half my month in self-imposed quarantine. Basically for 3 weeks out of 4, I was out of action. I really missed all the activities. I love to plan for getting out, visiting friends, traveling, etc. And…all that stopped.

Being confined at home has its good points and bad points. I’m still not sure one outweighed the other. It’s one thing to choose to isolate and it’s another to be told you must not go out. I guess time will tell whether it was the right decision to handle the Pandemic the way we did. For me, it was hard not having activities to look forward to, guests to plan for, places to visit, etc. It left me with entirely too much time to dwell on myself and my fibro symptoms.

My time wasn’t totally wasted, however. Our neighbors were taking out a rock patio and they kindly gave us the stones. On weekends, throughout the summer and fall, I created a new patio for our backyard, one rock at a time. It was like working a giant jigsaw puzzle!

I also discovered a new YouTube channel – “The Chateau Diaries”, and I became completely addicted to watching Stephanie Jarvis and friends restore a beautiful Chateau in rural France. Once I discovered how much I enjoyed her style, I started at the beginning of her vlog, binge-watched every episode to catch up, and now watch everything she puts out. It’s a lovely channel, and I always feel uplifted after watching one of her videos. I highly recommend it if you want to see some good clean entertainment with nice people working together for a common goal. And the setting and scenery are simply gorgeous!

Lastly, I picked up an old hobby of sewing. I had been sewing a little along, but this year has found me spending a lot more time (and money) creating quilts, placemats, clothing as well as other gifts and projects. I really enjoy hiding out in my sewing room (which is really our guest room…mostly unused during The Year that Wasn’t), listening to podcasts, sermons, and watching other videos while I create something beautiful from fabric.

It’s been one of the better ways I’ve found to keep sane during this stressful time.

I hope you will bear with me as I begin this blog again. 2020 was The Year that Wasn’t, but in some ways I guess it was The Year that Was…It was a year to reconnect with myself, without the drugs, without the distractions…A year to really focus on the truly important things like appreciating family and friends, being home, being healthy and being happy.

I hope that the rest of 2021 is just the beginning of the things that ARE!

I welcome your comments below. And, I also want to send a virtual hug to you!

Signature for Cathy on Aging Princess Fibromyalgia Blog

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