Skip to main content

Words of Caution When Tackling Chronic Illness

Short Articles Do Not Imply Easy Answers

In the future, I will share a weekly article about specific techniques, supplements and treatments that have helped me with long-COVID and CFS.  As someone with brain fog and energy issues, I must keep them under 1000 words to conserve my energy and the energy of my readers.

However, the short format and one-at-a-time presentation could give the false impression that I am touting a specific item or method as “the fix”.  That is not my intent.  My methods help me as a whole, so each item I share is just a piece within a larger puzzle.  I approach my situation by trying to find enough small gains that when combined, they add up to a positive difference.

Healthy Skepticism and Objectivity Are Important

People with chronic illnesses are often desperate.  Desperation makes us want to believe anyone who claims they can help, especially if that help is as easy as popping some pills.  Online reviews tend to be positive for just about every supplement that claims to help, and often the more expensive the product, the better the reviews.  I suspect that the positive sentiment is often about people wanting to believe that the thing they researched and spent money on is helpful so that they can have some semblance of power over their difficult situation.

Because of this, I think it important to be as objective and scientific as possible when looking for chronic symptom relief.  I discuss everything with my doctors and do research beyond product reviews, social media and marketing claims.  Whenever possible, I read up on scientific studies and pay attention to study sizes, whether or not they are double blind and peer reviewed, and who paid for them.  

If it is safe to do so, I try each new thing for a reasonable period of weeks and then pause it and see if I notice the lack.  To try and maintain objectivity, I use a symptom tracker app and when appropriate, diagnostic devices or tests to try and measure impacts.  If something is supposed to lower my blood pressure, I use a blood pressure cuff and take readings.  If it is supposed to improve my sleep, I wear a sleep tracker and review the results.  If I am trying to correct vitamin levels, I get a blood test and verify that I am on track.  

This approach saves me from taking 50 pills a day without having any idea of which ones are actually helping.  The more things that I add to the mix, the harder it is know if some of them are negatively interacting with prescriptions, stacking up side-effects or overwhelming my body so I try to resist the temptation to take everything just in case it might possibly help.  

Doctors Need the Complete Picture

Finally, I bring a written list of my current medications, supplements and methods to my doctor visits so that they can view them in their entirety and comment.  Most of the things I use were recommended to me by one of my various specialists who without my sharing would know little about what the others recommended.  I find it helpful to let each one see the full picture so that they do not accidentally create a conflict, and useful to ensure that my general practitioner acts as the centralized coordinator and referee between the various approaches.

Good luck with your battle with chronic illness.  I hope these comments provide ideas for maintaining healthy skepticism and objectivity as you find new ways to combat your symptoms.

© 2023 All rights reserved. This blog reflects the personal experience and opinions of a long COVID and CFS survivor and is not qualified medical advice. Consult a doctor for your situation.

Comments

Popular posts from this blog

Neuro Diet for Brain and Nerves

Dietary Advice I Received from a Long COVID Program As with many conditions, eating the appropriate foods can help with symptoms of chronic fatigue, brain fog and neurological strain.  Interestingly, when I started the post-COVID rehabilitation program, they put me on a diet that was extremely high in lean animal protein which runs somewhat counter to the modern fads of plant-based everything.  But many of their other suggestions seem similar to aspects of the Mediterranean Diet, The Harvard “Healthy Eating Plate” and other mainstream health diets.  Here are some of their suggestions to me, which were adapted from a pamphlet called “ Healthy Brain, Healthy Nerves ” by Doctor Jinny Tavee, a neurologist specializing in neuromuscular disorders and integrative holistic medicine. They Asked Me to Eat: wild caught fish: 3-5 servings per week, prepared without much fat (e.g. avoid deep frying, butter poaching, etc.) brightly colored fruits and vegetables: 5-6 servings per day green Tea nuts o

Recognizing Symptoms of Brain Fatigue Can Help

My last article discussed how to use pacing and energy budgets to improve performance and reduce symptoms.  However, I did a poor job of listing common signs of brain fatigue and how to recognize when a rest and cognition break might help so I decided to remedy that with this post.  Many of the warning signs are counterintuitive, so without a list it can be challenging to recognize when a symptom might be caused my mental fatigue and thus when a mental break is needed. Below is a list I copied nearly verbatim from a handout from a long-COVID recovery program from a highly respected research hospital.  It is not copyrighted nor proprietary, so I am free to share it here: Common Signs of Brain Fatigue Cognitive Symptoms of Brain Fatigue Difficulty concentrating Forgetfulness Slow speech Headache Word-finding difficulties Emotional Symptoms of Brain Fatigue Irritability Nervousness Withdrawal Physical Symptoms of Brain Fatigue Loss of appetite Low energy Nausea Balance Instability Nu

Free Nurtec ODT for Migraine Headache Relief

Long COVID and Migraines A common post-viral long-COVID problem is persistent migraine headaches.   Although they do not seem to affect the majority of post-COVID patients, they commonly plague those who had a history of migraines before their infections.   For those not familiar with migraines, they can be excruciating, and tend to come with nausea, sensitivity to light and sound, and various other symptoms.   Imagine the worst hangover of your life, where everything is too bright and too loud, your head feels like it is being crushed in a vice and you want to vomit.   That is pretty much me every day, year after year. What is Nurtec ODT and How Does it Help with Migraines? But the good news is that after trying just about every common migraine remedy without much relief, my specialist prescribed me Nurtec ODT.   Nurtec ODT comes in little white tabs that you place under your tongue and let melt/dissolve to be absorbed directly into your bloodstream.   It is commonly prescri