Expectations

It's Not in Your Head

Post viral syndromes (hang tight there are mindful things here that apply to cancer too) have been documented for more than a century, and even after you’ve calmed your symptoms down, they can still flare up from time to time. It would have been nice to have had a doctor who understood post-viral illness explain this to me 20 years ago, but it didn’t happen that way. I figured things out for myself by observing that something changed in my body after my kids brought fifth disease, a common and mild childhood illness, home from day care and shared it with me. Altering your life due to illness can be difficult, and frustrating at times, but it’s still possible to live a very meaningful and fulfilling life. I’m thankful for Grandma Interwebs who helped me understand what was going on with me way back then and then helped me find things to do for myself that improved my quality of life- primarily keeping my inflammation under control via an anti-inflammatory diet, especially during flare ups. Covid has sure introduced some new challenges for me, but I’ve been known for liking a good challenge, and Grandma Interwebs still has her game face on, so I’ve learned a lot about what to do for myself and long-covid, by trial and error, from others who have been sharing things that have helped them deal with the corona virus that keeps on giving. This may have something to do with being one of those Gen X people who are known for figuring out things mostly by themselves.

I’m actually feeling a bit fortunate that I was ahead of the curve with the long-covid post viral experience, but I feel for those who are dealing with something that hasn’t been well understood for the first time and on top of everything else the Covid era has created. Managing our own expectations in regard to our illness is one of the hardest things to do sometimes, but it can be done-

Some patients, Pittman says, “have the expectation that they're going to come in, and within a month they're going to be back to normal. And resetting those expectations can be really challenging. You have to be really empathetic because people's lives have completely changed.” But sometimes patients' quality of life can improve noticeably when they are able to adjust to a new normal. Still, he says, “patients have so many questions, and I can't lead them down a physiological pathway. I can tell them there's neuroinflammation, maybe there's autoimmunity, but we still don't have the answers. Sometimes it's really tough for us to accept and for the patient to accept that we just have to try our best.”

Lucinda Bateman, MD - Bateman Horne Center, has been doing an awesome job of increasing educational awareness on lingering post-viral illnesses and long-covid. However, as Mardi Crane-Godreau, PhD has stated in her post about potential long-covid research harms-

The implications are that LC is addressed as a psychological disorder and that the cognitive, conscious thinking parts of our minds can lead to Long COVID symptoms and to its resolution. This is out of date, Cartesian thinking.  It is reminiscent of a provider who implies or says to a patient, “It’s all in your head!” For some, it may do harm when they reflect that they are blamed or guilty, and that others view their illness as the result of “faulty or unhelpful ways of thinking.”

This kind of thinking with psychological implications doesn’t quite jive with the rest of the story science. For example, a recent article in the Scientific American, Long COVID Now Looks like a Neurological Disease, Helping Doctors to Focus Treatments; does a really good job of explaining exactly what Covid does to the nervous system. I would highly recommend printing off a copy of this article to hand to any neurologist who thinks that this illness is merely a psychological one because the physical damage to the body still needs to be healed. This does not mean that long-covid does not leave the mind entirely unaffected, the same article addresses this as well -

Psychological care and support groups can help. Lavretsky adds that “lifestyle choices can play a huge role in improvement,” particularly better sleep habits and the use of breathing exercises to control anxiety. She tells people their bodies can heal themselves if the patients and clinicians find the right tools.

We’ve shared a bit about how things like calming your breathing can help. Breathing techniques can calm your mind and your body and help contribute to your healing, so if you missed this one, it may be worth your time-

Breath of Life - by Stephanie Schaible (substack.com)

Somatic or mind body therapy may very well be helpful for anyone with cancer or chronic illness. If you haven’t heard of this before, I’ve dropped some links below. Please keep in mind that the mindfulness techniques that are used for psychological illnesses that are truly without a physical cause can also be used to help with chronic illnesses and cancer that really do have a physical cause because the mind is very powerful.


What Is Somatic Therapy?

The Science of Healing Thoughts - Scientific American

Chronic Pain Recovery & Breast Cancer Survivor, Theresa Winn

4 keys to healing stress illness Dr. Dave Clarke They Can't Find Anything Wrong

*Leaving Death in the Dust is a newsletter about shaking the death dust off of your feet and is not a replacement for professional, regulated, medical, healthcare. It is informational and educational. Some of us in this community may have worked in the healthcare system, but we are not your medical provider and whatever you find here is not the establishment of a professional medical relationship or medical advice.

Suffering that doesn’t kill us can be our best teacher if we let it.


Peace,

Stephanie

*Bonus tidbit and link will show below (behind the paywall) for paid subscribers,

SARS is not quite COVID-19, but if this (see behind the paywall) is known to happen in SARS, why wouldn’t it be more seriously considered as a probability by some physicians in regard to COVID-19? Why does there seem to be such a big disconnect between the science and some in the medical community? Feel free to comment and share your thoughts.

From, Neurological manifestations of COVID-19, SARS and MERS:

Chronic post-SARS syndrome and autonomic dysfunction

Chronic post-SARS syndrome was described by Moldofsky et al. The syndrome is characterized by persistent fatigue, diffuse myalgia, weakness, depression, nonrestorative sleep with associated REM-related apneas/hypopneas, an elevated sleep EEG cyclical alternating pattern and alpha EEG sleep anomaly [28].

Other authors suggest that prolonged fatigue and malaise may be linked to peripheral and autonomic nervous system dysfunction. Chronic fatigue may be present months after recovery from acute illness. One study shows autonomic dysfunction to be present in 50% of recovered SARS-patients. Subclinical orthostatic hemodynamic disturbances would lead to fatigue and dizziness [29, 30].