Love letter to my Roomba

Dear robot vacuum,

Thank you for coming into my life and sharing my glories, triumphs, and failures with me. You have made such an impact on my well-being, and my floors, and I cannot thank you enough.

Before you came into my life, the constant cat hair and litter crumbs, the food flakes, the lint and hair, it was a constant nuisance, and such an elaborate orchestra of effort to clean.

For some reason, the broom and I had to break up. It just caused me pain and suffering, and importantly, would just move the cat hair around. Now that you are in my life, you have actually dealt with the cat hair. You sucked it up. You are a vacuum.

When times get tough, when you think you’re stuck on a ledge, but it’s just the chair leg, or a black rug, I will be there for you. The only time you falter is when you need to charge, which I understand, because, sames.

Now when I look at my house, I see a gleaming clean floor looking back at me. I can walk barefoot without getting the willies. And there you are, chilling in your little port. And this is truly a miracle.

Thank you, Roomba. I love you.

To be fit in my 40s

I am trying some things this winter to beat the sunless, warmthless doldrums.

  • Not talking about my symptoms (unless it’s with a healthcare provider, or I’m explaining to my boss why I’m not coming to work)
  • Keeping the same sleep and waking times, even on the weekends (sleeping in is my favorite, but big shifts in sleep schedules can be an issue)
  • Limiting to one coffee a day, after work, or with breakfast on weekends
  • Shower more before bed
  • Drinking some fruit and vegetable servings daily in a really watered down smoothie that approximates juice, but still contains fiber, and definitely hydrates me first thing in the morning
  • Baking bread, which isn’t so much to increase my vitality but because that nyt no knead bread recipe is really delicious, and baking bread a few times a week keeps the house warm
  • Intentionally activating my parasympathetic nervous system a couple times a day for practice, and if I notice a stress response. Ex: taking deep breaths until I yawn a few times, progressive relaxation meditation, somatic therapy exercises
  • Incorporating fermented foods into my diet daily.

I read a memoir by a woman who healed from chronic fatigue syndrome. Parts of it seemed like sound advice. Parts of it seemed like real wellness influencer film flam (like starting and ending the book with Rachel Hollis quotes). I won’t be going to Arizona to live at a juice fasting meditation compound. I won’t be fasting or restricting my diet. I certainly won’t be giving myself enemas or colonics.

But her story about literally trying anything and everything to become well resonates. And her determination to become well despite setback after setback and a decade of illness was inspiring. I don’t think it’s ever too late to dig into trying to resolve a chronic illness.

I had some extra cash and paid for this dynamic neural retraining system (DNRS) video course. It’s supposed to resolve chronic illnesses without a medically understood physical cause. DNRS aims to retrain an impaired limbic system through cognitive behavioral and exposure therapy, as well as visualization to elevate mood and trigger the parasympathetic nervous system.

While elements of DNRS seemed legit, the idea that you have to perform a rigid series of spoken recitations and physical movements coupled with visualization for an hour a day for an entire year OR ELSE the program won’t work, seems like film flam. I get that dosage of therapeutic techniques matter, but in that vein, low doses should also prove to be somewhat effective.

An hour a day, every single day, for a year seems like an outrageous commitment to ask from chronically ill people. I’m also weary of any modality that caries the same pitfalls of diet logic, “if it didn’t work for you, it’s because you didn’t do it right,” or you lacked perfectionism, or some other bullshit that again places the illness, and the burden of resolving the illness, back on the ill person.

To save you the money and time, here are the really obvious take aways from these two resources:

  • Eat nourishing food
  • Try to get enough sleep, or improve the quality of your sleep
  • Healing takes time and resources, so if someone can bankroll your recovery so you can focus on only healing, you’ll have more success
  • Healing requires the nervous system to be in rest and digest mode, so learning ways to activate your parasympathetic nervous system will make healing physically possible
  • Healing requires you to deal with the stressors in your life, and recover from fight/flight/freeze mode after the stressor is over (see previous point)
  • The placebo effect is real. If you think a healing modality will work for you, even if it’s total junk, you have like a 30% chance of getting better from placebo alone
  • I should stop putting off travel. I should go to the beach. I need a vacation.
  • Don’t listen to the haters. You can get better. Either by making lifestyle changes, fixing your mindset, finding a good doctor, getting on some meds that work, or finally quitting that toxic life sucking job, healing is possible for you, and you better believe it!

As always, I’m trying to keep it positive in 2024, with the hopes of accomplishing my long term goal of being fit in my 40s. For me, that looks like increased vitality, a more rich social life, exploring my hobbies, and continuing to be in remission.

It’ll take a few years to get back in shape and build endurance and stamina, but I’m ready to commit to the process.

The Bowel Prep.

1. Pick a really good comedy to watch. Have like 6-8 hours of programming.

2. Don’t mix the laxatives with anything, just chug it then bite into a wedge of lemon. Lime would probably also be good. Maybe you can do a miralax body shot and also do salt.

3. Use wet wipes to maintain the integrity of your butt hole. You’ll need a plastic bag for used ones, don’t flush them!

4. Heated blankets and heating pads for abdominal aching.

5. Put a towel down on your bed. The only time ever shit myself in my sleep was during a bowel prep. But that only happened 1 of 3 times. So I’d say, 30% chance of shitting yourself.

6. A noon time appointment is better than an early appointment because you can start the bowel prep later in the day and only have to fast 1/2 of a day. Because fasting sucks and fucks up your body and metabolism.

7. Take a day or two off work. You don’t need to work in this condition. Tell your boss you have a 30% chance of shitting yourself.

8. In my personal opinion, not a doctor, not medical advice, if you are peeing clear liquid out of your ass, your bowel is adequately clean and you can stop chugging laxatives. Also reconsider if you need to keep going if you start vomiting.

Do you have any HOT TIPS for making the bowel prep for a colonoscopy less terrible?

Exercise: it helps fatigue!

One of my favorite activities to do when I can’t do anything because I have crippling fatigue is to read websites about what will help my fatigue. Many of these websites list exercise as a practical way to boost energy and mood.

So…

I want to just clarify that for me, fatigue means I’m incapable of things like: holding my head up; sitting upright; being conscious.

In a world where my body is a sleep prison, I have to prioritize where to spend my spoons every day. And they get spent at work, because I need money to live. Working for 6-7 hours a day (not even a full day because my fatigue is so bad and my work gives me accommodations) exhausts me physically and mentally to the point where my evening activities include: laying down; closing my eyes; listening to podcasts instead of watching TV because my eyes are closed; taking 5 hour naps, which I would argue aren’t naps because they’re so long.

So how will I find the time and physical capacity to exercise?

And for fatigued people, what counts as exercise? I am given the same advice as healthy people: raise your heart rate for 30 minutes a day. These 30 minutes can be broken up into shorter time periods.

Does doing chores count? Because I typically need to lay down after I do chores like taking out the trash, sweeping the floor, emptying the dishwasher, laundry, etc. This is the level of activity I am capable of but it seems unlikely that any person would consider this “exercise.” Furthermore, doing these things doesn’t make my fatigue less terrible. Literally everything makes me tired.

As an American, I have been ingrained with the ideology that everything that happens to me is my fault because of the fucked up social institutions of the myth of meritocracy and individual responsibility. As such, I have a complex where I have to seek out individual solutions to my health problems. Welcome to the club amirite?

We need comprehensive universal healthcare, wrap around services, free short and long term paid disability leave, and comprehensive workplace accommodations and modifications for disabled people that don’t threaten our existing jobs or our ability to be hired for a new job.

Disabled people need full inclusion into the workforce and health care system so that we can chip away against stigma and ableism.

We don’t need pithy individual solutions for our chronic illnesses that work for abled bodies but don’t work for disabled bodies.

Fatigued AF

I have a fun cluster of chronic illnesses that all lead to me being fatigued at this time of year.

  • Crohn’s disease
  • Seasonal affected disorder
  • Hypothyroidism
  • Regular ass depression
  • Premenstrual dysphoric disorder

I can’t wake up in the morning. I often have a headache or nausea right when I wake up, but that eventually goes away.

I have difficulty concentrating and have brain fog in the morning. This makes me late for work. I started going in early 3 days a week to co-teach a different math period and it’s pretty grueling.

My fatigue (on days off) is the most extreme in the morning. Some days I wake up at noon, drink coffee and have breakfast, then immediately go back to bed for 3 more hours.

The last week at work I have mostly been running on adrenaline. My focus and concentration plummet around 1PM.

I am not eating enough or eating well at work.

When I get home from work I sleep for 3-5 hours. I am the most mentally sharp in the evenings.

In this pattern I can’t fall asleep until wee hours of the night.

Chronic Fatigue be like…

  • Sleeping in every available free moment
  • Not sleeping thru the night
  • Holding my eyes open at work
  • Body feels like it’s made of a heavy metal sludge
  • Cranky about things that normally irritate me
  • Cranky about things that do not normally irritate me
  • Screaming, “Today is not the day!” (Just to make sure everybody knows.)
  • Weird paranoia about things my friends say that is just me being tired
  • Really wanting coffee but really not wanting to stand up
  • Drinking coffee all day with no discernable impact to my mental acuity
  • Trying to read this new book I pre-ordered and finally got delivered but my brain isn’t working and I’m reading words that aren’t there
  • Being late to work every day because I can’t get it together in the morning
  • Forgetting things
  • Becoming a cat

Snow Day

I had the day off work today as a giant storm system moved thru central Ohio. We got more slush and sleet than snow, so it was kind of a silly day to not have school but I’m not complaining.

I will be complaining, however, about the crushing fatigue I suffered all day. The storm brought me a headache and immense sinus discomfort. But our old friend oppressive Crohn’s disease fatigue hung out most of the day. I woke up pretty much only to pee or eat. I tried to get up and have a life at noon but it didn’t work so I went back to bed.

I think the effects of fatigue are the easiest to feel on days off. I probably felt this fatigued yesterday, but because I was at work I was distracted by teens and paperwork and jokes.

The moral of the story is when we actually have time to listen to our chronically ill bodies, they are screaming and crying for rest. And fuck capitalism for not letting us take care of our own bodies.

Shit I Have Tried to Heal My Colon

  • Bland foods (banana, rice, applesauce, toast)
  • Eating lots of cheez-its (logic: those usually make me constipated!)
  • Lemon lime Gatorade
  • Tests of my blood, urine, and poo
  • Colonoscopy
  • Urgent care
  • My PCP
  • A gastroenterologist
  • Steroids for months
  • Remicade
  • Speaking with a registered dietitian
  • Specific carbohydrate diet
  • Homemade applesauce, chicken soup and smoked salmon (when I completely lost my appetite and nothing sounded good)
  • Throwing away my rice cooker (regrets) to avoid certain carbs
  • Giving away lots of pantry items to avoid certain carbs
  • Weed
  • Smoking weed
  • Eating weed
  • Tramadol
  • Tramadol and weed
  • Heating pads
  • Yoga
  • Stretching
  • Pressure points
  • Yin yoga (aka laying on pillows)
  • Wearing only leggings
  • Wearing no pants
  • Meditation
  • Sleeping forever
  • Quitting my job
  • Feline therapy (thanks, Tom Cat)
  • Working less, ie: multiple online gigs simultaneously
  • Projectile vomiting
  • Asking my parents for money
  • Credit card debt
  • Taking out a loan
  • Exercise (gym membership once I got an ounce of energy, walking, swimming, weight lifting)
  • Netflix
  • Veganism
  • Getting a water filter
  • Not using plastic with my foods (nearly impossible and I gave up really fast)
  • Self-Healing Colitis and Crohn’s protocol
  • Microbiome Diet
  • Watching Anthony Bourdain eat delicious foods of the world while wishing I could one day have flavor
  • Not eating processed foods
  • Throwing out everything in my house with emulsifiers
  • Only using household and personal cleaning products without “toxins”
  • Whole foods in a blender
  • PEN (partial enteral nutrition)
  • Medical meal replacement shakes
  • Crohn’s disease exclusion diet

IBD and Disordered Eating

https://www.cghjournal.org/article/S1542-3565(21)00864-8/fulltext

Yelencich et al. (2022) Avoidant Restrictive Food Intake Disorder Prevalent Among Patients With Inflammatory Bowel Disease

TL,DR; people with active Crohn’s and UC should be screened for ARFID, a type of disordered eating that has to do with restricting certain foods or food groups.

My take: the experience of IBD and the lack of any dietary advice from the scientific community makes it more likely for people with IBD to develop high anxiety and fear around eating certain foods or entire groups of foods. We don’t know what’s safe for us, doctors won’t discuss diet with us, and there is scant research on dietary interventions (most of it is new and needs more research / much larger sample sizes).

If you have IBD, take care of your mental health too, because it can have a reciprocal effect on your disease / disordered eating. They all play into each other.

Stay nourished, eat enough, try to eat a wide variety of foods, and listen to your bod. Don’t be afraid to try medical meal replacements (EEN and PEN, modulen, ensure, Kate farms or orgain) if you are having a really hard time with food, it’s most important that you are nourished!

And lastly, don’t fat shame your IBD patients. We are already having a hard enough time, we don’t need to lose weight, our bodies are struggling to survive and be healthy, and health can happen at any size. Plus, if you keep prescribing us corticosteroids wtf do you think is going to happen? Cycles of illness and malnutrition will lead to weight gain in some people and that’s okay — what is important is your biomarkers and disease state, not your BMI.

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