breaking the cycle

I sat with everything I needed on Saturday afternoon, ready for physical therapy. My pain was climbing, so I knew I needed to increase blood flow to bring it down. But I was so fatigued. I did a few exercises, yet quickly abandoned my intention.

That night I lay in bed, muscles twitching and joints aching. This feels a lot like I used to feel before Silver Hill, I thought, defeated. Realizing that was particularly unhelpful and wanting to satisfy my need to assign reason to everything, I went through the day’s events before my failed attempt at physical therapy:

  • Went out for coffee
  • Went to the dog park
  • Read and did housework
  • Went to a charity event

Maybe standing around at the charity event was too much? Maybe I should have skipped the dog park and stayed closer to home? Actually, those were probably good things for me to do. Get up, get moving, and spend a couple of hours upright instead of horizontal. I examined my behaviors more closely:

  • Went out for coffee [I didn’t drink the clean, mold-free coffee I have at home]
  • Went to the dog park [Sat on a bench and spoke with someone for a while in a position I knew wasn’t good for me because I didn’t want to stand up and appear rude / awkward]
  • Relaxed with a book and did housework [This was probably okay]
  • Went to a charity event [Allowed myself to eat gluten and sugar because I was “having fun”]

No wonder that by the time I made it to physical therapy I was completely wiped. At this point, I was further into my pain cycle that I cared to admit, and the result was that I didn’t have the energy to complete my most important task of the day.

I decided then that I would do everything right the following day. I kept this promise but continued to pay for my Saturday throughout the week. I was able to fully complete my physical therapy only one time in the following three days; the other sessions were cut short. Additionally, it took me half the week to bring my sugar craving back down.

Sometimes we go through periods when new symptoms and / or illnesses pop up relentlessly. Perhaps this brings us to the decision that this is simply how things are for us, that we’re unlucky. We get into these cycles when you can no longer separate the original symptoms from ones that are medication side effects or secondary to the root of the issue. If we get too far into the cycle it can feel impossible, and maybe even useless, to pull ourselves out.

But, with each little change in my behavior. attitude, diet, et cetera I shift course. It’s usually just the slightest bit, but it’s enough that I look up a month later and notice something has changed. I don’t think I will ever be able to abandon the cycle completely, as some things are simply outside of our control, but each day I’m going to fight it a bit more than I did the day before…just in case I’m wrong.

 

 

celie: the dog of the world

 

spoonie puppy - stillmovingblog.com

celie and me in august 2016 right after i learned she was sick. i can’t believe she was ever this small!

When I picked up a nearly eight-week-old puppy on June 10th last year I was hoping that was the first day of many years we’d share together. At Celie’s very first checkup, however, I learned she had a serious heart murmur, and shortly after she was diagnosed with a long list of additional congenital heart defects. Most recently, about six weeks ago, she began having seizures we haven’t yet been able to control.

Life with Celie looks a lot like life with any human with a chronic illness. I’ve learned to expect the unexpected, like emergency trips to the veterinarian at three in the morning. I’ve seen my ability to take a bizarre set of circumstances and make them part of our daily routine. I’ve figured out how to manage my expectations and not get too bummed out when I see signs that make me feel she’s getting worse. I’ve learned that the possibility of “what if” can’t dictate either of our lives.

While I was initially gutted at the news that my puppy wasn’t expected to live long, I’ve actually gained a new perspective on my own situation just by being around her. I know, I know, she’s a dog and doesn’t fully understand her precarious situation. If you will, however, bear with me and suspend your disbelief for just a moment, as there’s something to be learned from this special little pup of mine.

Celie doesn’t stop herself from doing what she wants.

If she wants to run, she runs. If she wants to play fetch for thirty minutes straight, that’s what she’ll [try to] do. She might take a long nap immediately after, but she seems to do whatever she wants whenever she wants. This was definitely the case when she clawed through my drywall…twice.

Celie lets me know when she needs a break.

If we get home from work and Celie goes straight to the back to lie down, we don’t go for a walk that day. If she’s particularly antsy at the office I do what I can to take her to a nearby dog park during my lunch break; some days my dad even takes her for a walk in the neighborhood. If I’m planning on leaving her alone one afternoon and it starts pouring rain I take her with me or drop her off at my parents’ home. [She has storm anxiety and I don’t want her stress level to get unnecessarily high if it’s avoidable.] I’m really fortunate that I’m in a position to try to understand where she stands each day and react to her needs.

It’s imperative to find a team of medical professionals you trust.

While I’m not a huge fan of most Western medical practices, I’m incredibly grateful for Celie’s medical team. A large animal hospital is practically across the street from my house, and they happen to offer 24-hour emergency services. I debated taking Celie there when I first got her because there are less expensive options. One of my friends, however, explained that if I went to another place I should make sure they always have Celie’s current records on file because that is where I’d go if we had an emergency. I decided then that I should just make a doctor there her regular veterinarian, and I’m so glad I did. During time-sensitive emergencies it’s nice to have them so close, and after seven trips during the hospital’s emergency hours I’ve gotten to work with a handful of their doctors, and each is trustworthy / capable / wonderful. Lastly, because it’s a larger hospital they have specialists on staff and we don’t have to go to another unfamiliar environment where she is unknown. All of these factors make her medical emergencies, and regular care, considerably less complicated and easier on us both.

Celie needs recovery days.

After something happens that sends us on an unexpected trip back to her veterinarian Celie doesn’t immediately bounce back. She sleeps a lot the first day or two and works out whatever deficits remain for sometimes a week or more. She goes at her own pace and slowly returns to her typical behavior.  I think there’s this rush to “get back to normal” after people are sick, but that timeline is typically self-imposed. Setbacks are less likely to happen if you listen to your body and don’t get anxious about how you’re progressing at a rate you’ve predetermined is acceptable.

She asks for help when she needs it.

Most dogs leave their owners to get sick in private. Celie does not follow this trend. If I’m sleeping she wakes me up before her first seizure begins, and if I’m already awake she’ll come up to me and very clearly indicate she’s distressed. It’s as if she knows something is about to happen and doesn’t want to go through it alone. In those moments I also think she is asking for help. This is the exact opposite of what I’ve been known to do, and being secretive about my symptoms hasn’t gotten me anywhere!

You wouldn’t know she’s sick.

I hear this a lot about Celie. Most of the time it’s after she’s run full speed towards someone, jumping off all fours just so she can lick their face when they walk in the door. Of course, Celie doesn’t have an intellectual understanding of heart failure or seizures and that her prognosis doesn’t look good, but I believe she knows there’s something wrong with her. Just like when she wakes me up in the middle of the night before she gets sick, she understands that her heart is working way too hard and that her stamina isn’t as long as it was a few months ago.

Her life, however, isn’t about her chronic illness. It’s about making those she loves happy. Sometimes, it’s about figuring out a way to get me to share my dinner with her, but usually it’s all about everyone else.

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hear me out

alternatives to tv - stillmovingblog.com

 

Yes, there are many different symptoms that could make it difficult for someone to focus long enough to listen to an entire podcast or even hold a book. If you’re able, however, here are some replacements for the hours of television you may or may not spend watching.

PODCASTS [great for while you’re cooking / commuting / cleaning]

  • S-Town : I have my brother-in-law to thank for this one – also, probably Serial and This American Life because they produced it. Either way, it’s awesome.
  • Living the Dream with Rory O’Malley : The Broadway nerd within me cannot resist this podcast. Rory O’Malley, who is currently playing King George in the little-known musical Hamilton, interviews other actors about the ups and downs of show business.
  • Bulletproof Radio : Dave Asprey, founder and CEO of Bulletproof, is on the cutting edge of pretty much anything and everything that improves health and performance. While his methods can be a bit “out there,” everything he promotes is backed by research.

BOOKS [my replacement for watching Netflix before falling asleep]

  • Annihilation : I haven’t read a lot of fiction lately, but this one was quick, easy, and very enjoyable! Plus, it’s the first of a trilogy, so that’s always fun.
  • Stop-Time: A Memoir : This book was first published in 1967, but I only just picked it up. Frank Conroy is wonderful.
  • Still Alice : The movie was awesome; the book is even better. I admit, this suggestion feels a little like cheating since it’s also a movie, but the book was first so…

MUSIC [how I get through physical therapy]

  • Harry Styles, Harry Styles : I unapologetically love this album.
  • Coming Home, Leon Bridges : Chill and beautiful.
  • Groudhog Day The Musical : Tim Minchin, the show’s composer, said / tweeted [I can’t actually remember] something about how the album makes more sense the more you listen. For me, that was definitely true. I wasn’t into it at first, but now I know it’s genius.