Advice for Long-Haulers, from the Life-Longers

Christina Baltais/@wordsasmedicine
  • I mentioned the idea of “preemptive rest” — resting before you have a symptom flare, rather than after. You incorporate planned rest periods into your day as a preventative measure. You can find a good resource discussing this (and the general pacing) strategy here.
  • The Elemental article touches on the idea of heart rate monitoring. Experts recommend using a chest strap monitor, determining your stabilized resting heart rate (this Facebook group is a treasure trove of information about pacing with a heart rate monitor), and staying within 15 bpm of that number to start — especially if you don’t know what your anaerobic threshold (AT) is. Your AT is that point you really don’t want to go beyond.
  • Hence, the rule of thumb mentioned above: stay within 15 bpm of your stable, resting heart rate. Limit any time over that amount to only 2–5 minutes, and then rest. “You have to completely think different about pre-illness status and post-illness expectations,” says Stevens.
  • Pros recommend using a chest strap monitor for the sake of accuracy, because smart watches can be up to 30 beats-per-minute off. You can pair it with apps such as Sweetbeat HRV, Pulseometer, or Heart Graph, for example. In some apps, you can set an alarm to go off when you’ve hit your limit.
  • Do your computing while lying in bed — some laptop holders let you surf while supine. If you’re typing out a long email, type with your eyes closed.
  • Some canes convert to stools so you can sit on-demand wherever you are.
  • Cognitive exertion can cause symptom flares, just like physical exertion does. The Elemental article suggested that instead of expending mental effort following new plotlines, stick with things you’re already familiar with— Princess Bride, anyone? One long-hauler has started reading romance novels, for something light and easy to do. There are also many young adult books that may be easier on the brain. For a list of great suggestions, try here or here.
  • If struggling with brain fog, try this website for easy calculations, suggests Liz Moore, 35, a disabled writer in the DC metro area.
  • Get your own sleep data with something like an Oura Ring, or, you can wear your chest strap to monitor your HR and heart rate variability — a very informative measure — at night.
  • Address any comorbid issues, such as restless leg syndrome.
  • If you experience autonomic issues, such as postural orthostatic tachycardia syndrome, you may also want to consider increasing fluids with electrolytes (e.g., by adding NUUN tablets) or using an oral rehydration solution (such as Normalyte) — both of which can help decrease symptoms of orthostatic intolerance. But first please talk to your healthcare provider about an electrolyte replacement; don’t just dramatically increase your water intake.
  • If you have various sensitivies, try noise-cancelling headphones or earplugs, as well as an eye mask or dark sunglasses. Use scent-free products, avoid harsh chemical cleaning agents, and check for any mold exposure in your living environment.
  • Consult with a mast cell activation syndrome specialist, if need be.
  • If in need, some financial disabilities guides might be helpful.
  • If you’re female or female-presenting, it can, unfortunately, help to bring a male friend, family member, or partner to your doctor appointment.
  • If your physician refuses to order testing, tell them you want it documented in their clinician’s notes that you made the request and they denied it.
  • A few ways to help downshift into a more parasympathetic state: belly breathing, focus on any positive emotions and connections you can, meditate (many apps are free), keep a gratitude journal, try some brief and gentle qigong (if it does not trigger symptoms), watch positive or funny material (so, skip the horror movies), avoid interactions with toxic people, and stop doomscrolling.
  • Please, stop doomscrolling.

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