Return to the gym and other small successes after a week where cerebral palsy gave me hell

It’s a quiet Saturday morning despite absolutely roaring winds and nasty cold outside. The Teenager and I were working out some financial details last night over tequila shooters after upheaval this week (and plans to do taxes tomorrow) in light of the fact that her check engine light popped on last night. Her car has turned out to be an enormous money pit.

I’m drinking Friendly’s Arabica Mint Chocolate Chip Ice Cream flavored coffee. I adore mint in coffee, so I picked this up. It has a light and smooth flavor, so I drink it way too fast (as I am used to my bitter dark roasts) and makes the kitchen smell fantastic, especially considering it comes out of a K-cup. Both the mint flavors I have found since stumbling on the Dunkin white chocolate peppermint, have been branded Friendly’s.

The importance of exercise when you have a disability

Last night I returned to the gym, having warned my fitness and strength coach Andrew of Apex Training that he needed to leave the sadist in him at home because my body is still delicate.

(I know he’s a personal trainer, but that doesn’t seem enough to classify what he does, so I call him my coach. Life coaching has become so en vogue right now and that sort of coaching using combines listening, some psychological training and helping people get their metaphorical shit together. Personal training to me seems very goal oriented, whereas Andrew has to deal with a lot more than that. Training implies, in my mind, sharing knowledge of an activity that relates to form and tricks of the trade. It’s giving intellectual knowledge in combination with experience to help someone develop a skill, or in this case, a habit. But, having dabbled with hobby bodybuilding in the past, I have the knowledge and we’re working with non-textbook medical issues because I don’t have a “normal” body, so I need some extra support. And I love the guys at Apex for all the support they give to me.)

Andrew prepared a lovely full-body workout circuit for me that focuses on quality of movements versus high intensity or heavy weights. He and I have noticed during our now year-long relationship that the second set of an exercise is always better than the first set. And we’ve come to believe that my body– because my brain and the muscles in my lower body can’t communicate like they do in people without neurological conditions– needs to be reminded what to do. It feels like my body needs to be shown basic movements after even the most basic hiatus to break a cycle of malfunctioning, reset, and proceed in a different and better manner.

That circuit reminded my body parts how to work together again and get all those tissues and electrical connections firing. And after a week of sometimes intense pain, emotional and physical stress, and constant discomfort, the exercises allowed me to test my movement and release any sensations of immobility or fear I was clinging to. And Andrew was there to monitor my performance and make sure I didn’t hurt myself.

And let me just add, in case anyone else struggling with a disability like mine that manifests differently in people or that the medical establishment doesn’t fully understand: It is 100% true that you know your body best, but it’s also true that our experiences in bodies that do not do what standard bodies do often blind us to what we can and cannot do. This can bubble to the surface in many ways: 1. We are stubborn and should not do many of the things we attempt to do; 2. We give up too easily; and 3. Because we never see our bodies from an outsider’s perspective so we have a skewed outlook.

These are all important reasons why I have a personal trainer. All of them. I learned this from listening to my daughter talk about my body. She didn’t mention it as a young child, but as she got older she said things like, “Mom, your feet are fucky. Fix them.” She saw me fall so many times that she began to notice the signs of when I might fall. I don’t see that. I don’t see my feet from an outside perspective. And that’s why it’s emotional painful to see photographs of myself with twisted knees. And also why I asked Joan to photograph them for Not an Able-Bodied White Man with Money. And if I’m honest, why I put the photo spread in the back of the book. (See below for Amazon purchasing details or buy from us here.)

In many ways, Andrew knows my physical limitations better than I do. THAT is why I have a personal trainer. If it weren’t for him, I wouldn’t have exercised at all last night. And this is why I get angry when people cite a disability for why they can’t work out– that is specifically why you need to work out. You can’t pound weights like a powerlifter or run marathons, but bodies need to be used and challenged.

Mundane things like food and mail order packages

Rant over… My blood pressure is elevated this morning, but looking at the patterns of the last week and my list of dietary choices, I can see the role salt has had in my numbers. Dinner Thursday night had more salt than I’ve had recently, and dinner last night consisted of a canned black bean, sheep cheese and processed mole sauce lasagne with lentil noodles, laced with that sodium.

screenshot from Goodreads

Add the tequila, of which I did not have much, and the fact that I was licking salt off my hand…

I woke to a truly distressing dream that started as one of those dreams where you need to use the bathroom but can’t find one. I was wrestling a woman in a cheetah print denim dress to beat her to the toilet, and then, in the dream, I could not pee. Despite the pain and urgency of needing to pee. I suppose my mind really wanted me to wake up, because the next part of the dream haunts me even now. I saw a baby, who appeared to be blind (remarkably similar to the early 1980s hardcover, purple dust jacket edition of John Saul’s Comes the Blind Fury. And the baby had a baby. They were side by side, a newborn and a larger infant. Which took a cheese grater to my emotions, because I don’t think they were Irish twins. I had no choice but to get up after that horrific scene.

To bring things back around to happier things… and more references to Parisian Phoenix Publishing… (Please buy books!!!)

I prepared a special mail order package with a signed copy of The Death of Big Butch. I will be headed to the post office today.

What I ate Friday:

  • 4:30 a.m., one cup Friendly’s Peppermint Stick coffee, with half and half
  • 5 a.m., first breakfast, honey nut Chex with Silk protein cashew-almond non-dairy milk
  • 8:30 a.m., second breakfast, salted and roasted pistachios, mango jerky from Solely
  • 11:30 a.m., lunch, vegan tofu spring rolls and cabbage, diet Pepsi
  • 3 p.m., snack, iced coffee with half and half and cinnamon a very berry oatmeal cookie from Panera
  • 7 p.m., dinner, black bean and sheep cheese lasagne with cheddar and mole sauce on green lentil noodles and plantain chips
  • 8 p.m., tequila shooter with pink Himalayan sea salt and a slice of lemon

(and about 60 ounces of water)

Anatomy of a sick day (and a really cute Stitch Fix Freestyle blouse)

The Teenager received her remaining Freestyle packages from Stitch Fix yesterday– one from the warehouse in Indiana and one from the warehouse scheduled to close in Utah.

So, before I launch into another blog post about the frustrations of learning the limits of my own body, I waited to share this photo of her in a super adorable top I found for her on the web site. I’ve probably folded and shipped at least 20 or 30 of these. Every time I’ve dealt with it I’ve struggled with its fluidity, wrap front and floppy sleeves. I’ve thought to myself: This must be a difficult shirt to wear.

When it arrived at my house, I thought, “oh it’s that shirt.”

And when the teenager put it on, I saw that she pulled it off beautifully. In my opinion, she looks way better than the model on the web site.

Now onto the cerebral palsy update…

It’s been two years since I started this journey to learn what cerebral palsy actually is, how my body works, and what I can expect as I age. I had no real medical treatment from age five to age 20, which means this is all very new to me. And fascinating.

And it’s been a month since Stitch Fix changed their metric measurement system in our warehouse and graciously implemented my workplace accommodations. Keep in mind that until five years ago I did not consider myself disabled and I worked really hard to do and appear as typically-abled as possible. When I started with Stitch Fix, I mentioned my disability in my interview and it is because of the culture at Stitch Fix that I had the resources and the space to explore my physical condition.

Stitch Fix is in the news right now for some changes, including closing the Utah “hizzy” and asking the CEO to step down. The founder has resumed the role of CEO for now. So, this post is about me and my journey, but I also wanted to point out that it wouldn’t be possible with the support of my colleagues at Stitch Fix.

Last week was rocky. I did a shift on the men’s side of the warehouse, then returned to my home department on the women’s side to find that the support on the women’s side hadn’t completely worked out the kinks. I just repeated to myself that we were all adjusting, and this was a big change that impacted more than just me, and I jotted down the inconsistencies I noticed and pointed them out verbally but not in writing to ask questions about how my accommodations would work and how they effect operations in our department.

Because one incident of an accommodation not being met is a coincidence, multiple is a trend. And none of my concerns became a trend. But I did experience a fall last week, which undid my most recent chiropractic adjustment. Stress may have played a role in that fall.

The great news is that yesterday went without a hitch and I even got a chance to talk to more of my peers, hopefully reducing any tension that may have been introduced by my accommodations changing how the department operates. My numbers have steadily remained where they should be, and on Friday I even hit 105%.

Bad news is… I felt so good yesterday and was working hard and hitting numbers… and I did not take my Baclofen. I don’t normally take it on weekends, and I honestly don’t recall if I took it yesterday morning. I know I did not take it with lunch like I normally do.

Then, being the person I am, I went to the gym and completed my regular weight training which, on Mondays, focuses on upper body.

I came home, showered, had dinner, and by the time I did some other household chores, I dropped into bed a little later than usual. I woke up slightly before midnight with my legs very tight and my shoulder throbbing. It took about two hours to go back to sleep. At four, when my alarm went off, I got up and fed the cats and visited the bathroom. I stretched and changed the toilet paper roll.

I felt much better, but did I feel good enough to go to work? My brain said, “sure.” My body replied, “well, a hard day’s work might stress your already achy body more. And that would perpetuate the cycle.” My brain added, “And you’ve had somewhere between four and five hours sleep. Is it really wise to go to work sleep-deprived? You’re a fall risk on a good day.”

I reset my alarm for five a.m. It never went off because I laid in bed the whole time pondering what to do.

I hate “calling out sick.”

And then, after looking at my PTO bank, my brain said, “this is why you have an intermittent leave. This is a disability-related absence.” But of course, being me, I had to debate whether or not to go in late. I didn’t know when I would wake up if I went back to sleep.

So, I emailed my supervisors and “called out.”

I got out of bed at seven feeling even better than I did at four, though my shoulder still hurt and my healed mallet finger was very stiff and uncomfortable. But now at least I had had seven hours sleep.

I realized when taking my morning medication that I had not taken my Baclofen regularly. This may have proven that it does make a difference, a difference I might not notice until it exits my system. And I also recognize that I very much need to be sure to use both my left and my right sides when I retrieve and empty the fixes that come to my station.

A lot of trial and error.

The Strongest Man in History

I spent today binge-watching The Strongest Man in History, a History Channel series where competitive strong men Robert Oberst, Eddie Hall, Brian Shaw and Nick Best try to replicate some of the most legendary strong man feats in history.

Left to right: Shaw, Hall, Best and Oberst

Now, at first I scoffed at the thought of professional strong men in a History Channel documentary series but I have to admit; they did at extraordinary job. The show was witty, had a great historical depth, and allowed the viewer to see a different side of these athletes— and for me, it offered a chance to see just how intelligent and athletic these men are.

It made me lament how far I’ve left myself go with my own fitness goals, and I could offer excuses but excuses remain excuses.

I’m sad that I finished everything series.

And I’m very impressed with Nick Best, who, at 50, keeps up with the younger men.

Turning the day upside down

Yesterday, Black Friday 2020, I did something I never do— I went to a store. Two actually, Marshalls and Home Depot. I promised the teen.

We were already out-and-about due to agreeing to pet-sit for our cat fostering godmother: two personal indoor cats, two outdoor cats, two dogs, ten of the organization’s cats in the garage (including one kitten recovering from distemper) and 17 foster cats in the “cat alley” in her house.

Somewhere around this time of opening cat food cans, after perusing Home Depot for drain covers and paint stripper and checking out Marshall’s for Christmas gifts, the teenager goading me into ordering Little Caesars for dinner. I ate way too much pizza, watched an episode of The History Channel’s The World’s Strongest Man (Viking Challenge episode) on Hulu.

I went to bed early, as I had volunteered to go to work for an overtime shift at 6 a.m. My superpower— innate time sense—allowed me to wake at 3:56 a.m. when my alarm was set to go off at 4:30. My goodness is that an early time in the morning.

Fog and Misty were the only cats awake at that hour. Fog and I went out to the sun porch to enjoy a cup of coffee and some cuddles.

Meanwhile, Misty sat in the window sadly, expecting me to open it. When I didn’t, it either didn’t occur to him to use the door or he couldn’t figure out how to get through it.

The teenager made me a cup of iced coffee and put it in the back of the fridge so I could bring it to work with me when I left the house at 5:30 a.m. That coffee is so strong I don’t think I will ever sleep again.

It was so strange to see the sunlight streaming in the windows at the warehouse. Everyone working today was working on women’s inbound processing. So that was fun. And I even managed to run the tagging gun through my fingertip and someone manage to adhere the tag to the garment and my flesh. But it was dead skin so it didn’t bleed.

And for some reason, I felt compelled to try and remove my finger without ripping the tag off. And I did.

The Wheel of Fitness

I know it’s common to witness women caught in a cycle of dieting/food deprivation. I know for a lot of women, weight melts away, plateaus, and returns. My experience with this yo-yo effect occurred due to various health challenges: cerebral palsy, anemia and anxiety, followed by an accident that broke my teeth, and two broken bones in the span of two years.

When I turned 39, I suddenly realized… my once relatively stable body had reached its lifetime heaviest and more than that, my stamina and strength had waned as well.

I vowed to myself I would get in shape before I turned 40.

Problem is, I had never tried to lose weight before. Turns out I was good at it. I started at 142 and dropped to 112 in about the span of a month.

I bought a fitbit to make sure I ate enough. I got my weight to 120. Then 125. Then 130. It didn’t stop there.  Today I’m at least 135.

But now, as I have my 43rd birthday approaching in 8 months, I have great upper body strength but I have gained so much of that weight back. I don’t have the stamina to go out and walk for four miles just as a fun jaunt. I’m afraid to ride my bicycle.

This isn’t the first time I’ve experienced this. In college I started weight training. Then stopped.

My first job came with a gym membership, my muscles returned. And I stopped.

Then I had a baby.

My first big supervisor job, I went to the gym if the staff started stressing me out. Between that, and the fact that my daughter ate half of all my meals, I got in shape again.

And then I changed jobs.

Now I am back to being out of shape. Strong, sure, but not as strong as a year ago. But I am out of shape.

So I started logging food, exercise, water and sleep habits. Even vitamins. Because what I need are healthy habits and routine. Seeing it on paper helps. And I won’t diet. I need good food to make my body feel hearty and to fuel it for exercise.

To start: do something every day. No excuses. I’m starting small, because I’ve had houseguests, worked a lot of hours, it’s PMS week and my daughter is in marching band. I’m rededicating myself to my home weights, doing ab exercises hopefully every day, and shooting for yoga everyday.

Yoga?

I find that a great place to start. I need to stretch out those muscles and body parts and prep it for whatever to come. Find the parts of my body holding stress. And most importantly, it can be a part of my day where I connect light activity with calm and breathing. A great way to slow down and reward my body, not just push it.