Showing posts with label pacing. Show all posts
Showing posts with label pacing. Show all posts

Wednesday, October 30, 2024

Excellent Medical Explanation of Exertion Intolerance (PEM) in ME/CFS & Long-COVID


I was crashed today, for mysterious reasons only my body understands, so I settled in to watch a video I bookmarked ages ago: Dr. Todd Davenport speaking on Insights on the Physiology of Post-Exertional Symptom Exacerbation (PESE) in 2022 at the San Diego Pain Summit. PESE or PEM is the hallmark symptom of ME/CFS and now, long-COVID, but so few doctors know about it or understand it. This conference seems to be focused on medical professionals and especially physical therapists, and Todd's talk provides a much-needed medical explanation to this audience as to why exercise--that may be good for other conditions--is harmful to those with ME/CFS and long-COVID.

PESE is such a far better term than Post-Exertional Malaise (PEM). Anyone who has spent days, weeks or even months pinned to their couch or bed simply from taking a walk or going to the store or attempting to make a meal for themselves knows that "malaise" is such an inadequate word for the total decimation we experience after even mild exertion.

Todd's talk at the Pain Summit is a fascinating exploration of the medical and physiological basis for PESE/PEM. He shows data that proves that the PESE experienced by ME patients is completely different than the way that deconditioned people react after exercise. This would be excellent to share with any medical professionals, including doctors who suggest graded exercise therapy (GET) and physical therapists who work with any patients with ME/CFS or long-COVID. Todd has also included the research study references that back up his data, for anyone who wants to learn more (or for doctors who don't want to watch the video--I recommend copying his scientific references and printing the list for your own doctors or PTs).

You can watch Todd's excellent presentation, Insights on the Physiology of Post-Exertional Symptom Exacerbation (PESE), on YouTube (with the references listed below in the notes - click on "... more" below the video). (Note that I normally include videos in the body of my blog posts, but this one is unavailable for embedding that way, so it has to be watched at the YouTube link.)

If you have ME/CFS or long-COVID and are going to physical therapy for any reason, like an injury or rehab after surgery (hopefully not as a "treatment" for your disease), I also recommend printing my Guidelines for PT for Patients with ME/CFS or Long-COVID (it includes a PDF document you can print and take to your PT), which will educate your physical therapist on the basics of PEM/PESE and how to work with you safely, without exacerbating your symptoms.

I had the pleasure of "meeting" Todd (virtually) when we were both invited to speak in a webinar hosted by Physios for ME, a UK organization of physical therapists who work with ME patients, called Heart Rate Monitoring for Post-Viral Fatigue Syndrome and Myalgic Encephalomyelitis. Todd spoke during Part 1 which explained the medical/scientific basis for PEM/PESE and the usefulness of heart rate monitoring, and I spoke during Part 2, which featured patient experiences using a heart rate monitor.

You might also find useful my post on Heart Rate and Post-Exertional Crashes, which explains in simple terms why monitoring heart rate can help to prevent crashes and how to calculate an estimate of your personal limits, and my article, Using a Heart Rate Monitor to Prevent Post-Exertional Malaise in ME/CFS (it also applies to long-COVID, though I wrote it before 2020).

I hope you find this information helpful for you and your doctor.

Do you use a heart rate monitor?

Do you practice pacing, staying below your anaerobic threshold?

Please share your own experiences in the comments below.

You can also connect with me on Facebook and Twitter and Instagram.

Thursday, April 18, 2024

Spring Camping Vacation Vlog


The blog has been quiet because we were on vacation last week! I not only had no internet; we didn't even have cell service much of the time! We were truly off-the-grid, and it was very relaxing. I put together a travel vlog, loaded with videos and photos of camping, hiking, kayaking, reading, and lots of relaxing! Plus lots of great footage of peaceful nature scenes, to help YOU enjoy the restorative effects of nature, too.

We drove with our pop-up camper down to Virginia (about a day's drive south, so perfect for April) and visited two beautiful state parks there: Holliday lake State Park and Fairy Stone State Park. On our way back, we spent the weekend on Smith Mountain Lake with my college suitemate and her husband (also a college friend) and really enjoyed both the gorgeous setting and the company. Nothing like old friends!

You can watch the vlog on YouTube or I''l insert it below - be sure to turn up your volume to enjoy the sounds of birdsong, bubbling streams, and trees swaying in the wind:


As you can see, I am still feeling really great! As long as I get my 9 hours of sleep a night and my afternoon nap, I can be quite active during the day (9000 steps one day on this trip - a new personal record!). And I have still not crashed even once since the beginning of the year. For details on why,  check out my 2023 Year in Review post (scroll down to "What Helped").

Vacationing this way--in our little camper, our home away from home, on our own schedule--allows me to relax and enjoy a getaway.

Are you able to travel at all or enjoy a vacation?

What helps you?

Please leave a comment below.

You can also connect with me on Facebook and Twitter.

Wednesday, February 07, 2024

My 2023 In Review: Chronic Illness Rollercoaster!


Chronic Illness is often said to be a rollercoaster (in fact, Riding the Chronic Illness Rollercoaster is the name of a chapter in my book!), and that was definitely true for me last year, with plenty of ups and downs in my life with ME/CFS and Lyme. I'm a little late with my usual year-end wrap-up (and only just set my goals for the new year!), but that's another fact of life when you have chronic illness; we make accommodations. 

NOTE: I like data and am an analytical person. For details on how I simply track how I feel on a calendar, check out my post, My Progress in 2020 and Goals for 2021 and scroll down to My Health in 2020 and below that, the section called "How Do I Know This?" Or you can watch my short video, Chronic Illness: Tracking How I Feel, Symptoms, and Treatments. I use a 1 to 5 rating, where 1 is good and 5 is mostly bedridden. I also rate my exertion each day on a 1 to 5 scale. And for details on the process I use for goals, which focuses on taking very small steps toward what I want in my life, see my video, Setting Goals When Chronically Ill (Improve Your Life in Tiny Steps).

 

2023 in Review: My Health - the Data

Average How I Felt = 2.5 (1 is good; 5 is bad)

  • 13% better than 2022, which was my worst year in 21 years of chronic illness.
  • My best months were 2.2, and my worst was 3.4.
  • Things have been a lot worse for me since 2020 (see my Relapses & Recoveries post), so this was a move in the right direction!

Average % crashed = 15% (meaning I was couchbound/bedridden 15% of the time)

  • Crashed = a 4 or 5 on my scale, unable to function, stuck in bed or lying on the couch.
  • 12% better than 2022, which was a low point.
  • The average doesn't tell the whole story because there were some highs and lows.
  • My best months were April and June, with only 3% crashed, but in my worst month, November, I was crashed and nonfunctional 50% of the time.

Average exertion = 3.8 (on a scale of 1 to 5)

  • 8% better than 2022.
  • My best months were April and October, with 4.3 average exertion, and my worst month was November, with just 2.8--I spent much of that month lying on the couch.
  • I think my exertion level looks better than I actually felt; I know that I was pushing myself too hard and not resting enough during some of those early crash months. I finally gave in and rested in November.

  

What Made Things Worse Last Year:

  • Not listening to my body and resting enough when I crashed.
  • Yeast Overgrowth - this was definitely my biggest issue in 2023:
    • As with many people with ME/CFS, I suffer from chronic yeast overgrowth due to the specific kind of immune dysfunction in this disease.
    • I made the mistake--over and over!--of assuming it was under control because of all the treatments I routinely take/do that normally work effectively. This kept me from recognizing (and treating) the underling causes of my repeated crashes.
  • My diet. I was calling my diet Paleo, but honestly, I wasn't sticking it to it very strictly by last year. This was a huge contributing factor. If I had actually stuck to a strict Paleo diet, the yeast overgrowth probably wouldn't have gotten so much worse.
  • A short round of steroids (prednisone for five days) in November. Since the issue was actually yeast overgrowth, suppressing my immune system was not a good idea!

 

What Helped Me Last Year:

I tried eight new treatments (or adjustments to old treatments) last year that helped me. Below are the changes that helped me the most (some things that I tried, I'm not sure yet if they are helping or not).

  • Normalizing my thyroid function. I spent a full year working with my primary care doctor on this, getting thyroid labs every two months, adjusting my meds, waiting another two months, repeat. All that effort, patience, and persistence paid off, and I am starting 2024 with my thyroid working very well! Besides increased energy, less fatigue, and more stamina, I lost 20 pounds over the past year--back to pre-illness weight! It's been eye-opening to see what a difference this makes. I wrote all about it in Diagnosing and Treating Thyroid Dysfunction in ME/CFS and Long-COVID.
  • Changing my diet. In the very last two weeks of the year, I drastically changed my diet, once my functional medicine specialist pointed out to me that I still had thrush in my mouth, even with all the anti-yeast treatments I was on. I took her advice to "starve the yeast" by switching to a no-carbs Carnivore Diet. It is what it sounds like: meat, fish, eggs, butter, and no carbs at all. It worked, and by the first days of January, I was feeling the best I have felt in many years! Here's my video about my first month on the Carnivore Diet. I am currently about 97-98% Carnivore; I occasionally have a few bites of non-yeast-encouraging veggies or avocado. I am still feeling great (for me!). I've been seeing friends, taking daily walks, and even helping a friend with her move. Today, I went shopping for clothes for the first time in ages (my clothes are all too big now), and it is just such a thrill to be back out in the world!

 

Other Highs and Lows of 2023 for Me:

Lows: Obviously, with all of 2023's health issues and months spent on the couch, many things just didn't get done last year:

  • Not enough time with local friends.
  • Very little writing outside of my two blogs and no magazine articles.
  • No energy for our home--decluttering is getting urgent!
  • Given my poor health many months, I was not able to walk as much as I like or keep up even my tiny on-the-floor strengthening routines. 

Highs: But as always, though my year seemed awful when I was stuck on the couch in November and December, when I look back, I see some wonderful highlights:


My husband and I enjoyed 3 relaxing week-long camping vacations: to Virginia state parks in April, to the Catskills in June, and to the Virginia mountains in October for stunning fall foliage! When we travel with our camper, it is very easy and low-key. (links are to my travel vlog videos, where you can see some of the beautiful natural surroundings we enjoyed).


We enjoyed three weekends with our adult sons and their girlfriends, one at home for Father's Day, one camping in Pennsylvania and one at a rental on a lake in New Jersey. We cherish that quiet, laid-back, fun time with them!

My childhood best friend, Michelle, came to visit me in July, and we enjoyed a wonderful weekend together, reminiscing and making new memories!

In September, I finally got to meet in person my friend from across the world! Annie and her husband were visiting from Australia, and they made time in their busy schedule to meet up with us. Annie and I met online over 10 years ago, in the group I started for Parents of Kids and Teens with ME/CFS and Related Illnesses. We both had sick kids, and we supported each other and bonded. Annie later helped me run the group, and we've stayed in touch even though our "kids" are now grown up (and both doing quite well). It was such a treat to meet in person!


I stuck with my new goal to spend time outside every day and so enjoyed that extra time in nature! Given the state of my health, often that time was spent lying in a reclining chair on our deck or very slowly walking around the little cul-de-sac in front of our house, but the new habit really enriched my life. If you'd like to do the same, Join Me to Notice and Enjoy Nature More in 2024! with my #nature365 project.

 
So, that was my 2023.

How was last year for you?
 
What small joys did you experience?
 
What treatments help you?
 
Share your experiences (or any questions) in the comments below.

 

Wednesday, December 13, 2023

Chronic Illness Vlog: Still Relapsed, Still Flat, Trying Treatments


I recorded a vlog last week, showing an honest view of my life with chronic illness, which is currently quite restricted. My months-long relapse defined by immune activation (especially almost-constant, flu-like aches) continues. I had some really bad days and some not-too-horrible days, though I spent most of my time horizontal on the couch. I did manage a few brief outings last week, plus some online shopping and other holiday to-do's from the couch. Most importantly, I was trying two new supplements that I think are helping, plus a prescription from my ME/CFS specialist to try to break this immune activation cycle I am stuck in.

You can watch the video on YouTube or here below:


You'll see this vlog is a bit longer than my usual ones because I tried to explain as much as I could about the treatments I am trying. As always, the notes below the video on YouTube include lots of links to more information and anything I mentioned in the video. I will reprint those here:

Article on treating severe ME from Norway, plus a look into the future 

Diagnosing and Treating Thyroid Dysfunction in ME/CFS and Long-COVID 

Iodoral (iodine) for thyroid

Treating Immune Dysfunction: This blog post includes information both on improving immune function and on treating underlying infections

Effective Treatments for Yeast Overgrowth/Candida  

Diagnosing & Treating Orthostatic Intolerance (OI) blog post 

Chronic Illness Tracking: How I Feel, Symptoms, and Treatments 

My post from last year on Relapses and Recoveries 

My local bookstore interviews me about life with chronic illness and my book

I'm still achy today, still on the couch. I did sit up to record a couple of short book videos but am back to flat now (and more achy). 

 

How was YOUR week?
How are you doing?

Please leave a comment below.

You can also connect with me on Facebook and Twitter.

 

Friday, September 01, 2023

Chronic Illness Tracking: Symptoms, Treatments, Exertion & How I Feel

For over 21 years now, I have used a simple system to track important aspects of my chronic illnesses at the end of each day: how I felt, my exertion and stress levels, any unusual symptoms, and stopping/starting/changing treatments. I just take five minutes to jot down a few numbers and a few notes on a calendar before bed. Over the years, this data has helped me to get diagnosed, find patterns in my symptoms (including how much exertion or stress leads to a crash/PEM), and figure out whether or not treatments are helping.

In this brief new video, I explain how and why I do this, so that you can set up your own tracking system that works for you. You can watch it on YouTube or below:

 

My system is still mostly paper-based (other than heart rate tracking and step counting), so if you use apps or other electronic means of tracking, I'd love to hear about it.

How do YOU track symptoms and other aspects of your chronic illness?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

Thursday, August 10, 2023

New Research & Resources on ME/CFS and Long-COVID


I currently have 18 tabs open on my laptop browser, and most of them are new research on ME/CFS, long-COVID, Lyme disease, and related topics that I wanted to save to tell you about! So, I think it's time to pull some of this information together for you and clean up my browser a bit. 

And that's the really good news: there is so much exciting research going on right now, being reported each week! It's hard to keep up with it all, so let me help you with some quick recaps, with links to more information:

Helpful Resources for Patients (and Doctors, too):

Last week, I wrote a whole post about Resources for Educating Doctors about ME/CFS and Long-COVID, so be sure to take a look at that, too. Here are a few additional resources that I've found helpful as a patient:

  • Heart Rate Variability from the Bateman Horne Center (led by Dr. Lucinda Bateman, one of the top ME/CFS specialists in the world) - this simple one-page information sheet explains what Heart Rate Variability (HRV) is and how it can help you track how well (or poorly) your autonomic nervous system is functioning. This is another easy way track how you are doing, with hard data, in addition to heart rate and steps taken (see my video and blog posts on Measuring Limits with Heart Rate Monitor and Step Counter). I'd heard that HRV was important but didn't understand it - now I do! I have set up my Apple Watch to track HRV daily, as well as heart rate and steps taken - just another tool to measure when I need to rest and when I am doing OK. Share this with your medical professionals, too!
  • Physiology of Post-Exertional Symptom Exacerbation - this video from Dr. Todd Davenport explains the latest scientific findings about why exertion makes us worse and what is going on in the body of someone with ME/CFS or long-COVID when we are active that causes the characteristic crash. Dr. Davenport is one of the top experts in this field, and I had the pleasure of "meeting" him when we were both participants in a set of informative videos about using heart rate monitors in ME/CFS (Part 1 and Part 2), intended for both patients and physical therapists/physios.

 

New Research Advances and Updates

  • "Blood Tests for Chronic Fatigue Syndrome," an article in Drug Discovery News. This article, which is written in clear layperson language, describes the need for biomarkers and diagnostic testing for ME/CFS, and three of the best possibilities from recent research. You can't go into your local lab to get any of these tests yet, but the progress and the focus of these researchers is encouraging. This is also a great article to share with any doubting doctor (along with the Resources for Education Doctors about ME/CFS and Long-COVID).
  • "Circulating MiRNAs Expression in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome" - directly related to the article above, microRNAs are one possibility for future biomarkers/tests to diagnose ME/CFS. In this case, the focus was on how miRNA gene expression specifically for activated HHV-6 infections (common in ME/CFS) could differentiate ME/CFS patients and healthy controls. This short abstract describes the findings.
  • "Nicotine applied by transdermal patch induced HSV-1 activation and occular shedding in latently infected rabbits" - I wouldn't normally call attention to an animal study but this one was disturbing, eye-opening, and definitely relevant to ME/CFS patients. We are known to have reactivated herpes-family viruses in our bloodstreams; the specific kind of immune dysfunction of ME/CFS and long-COVID causes these old (latent) viruses to reactivate. There has been talk among long-COVID patients on Twitter of using nicotine as a treatment. Given this evidence that it could cause further activation of herpes-family viruses, I would pass on that one (not to mention how addictive it is).
  • "Convergence: How Gut, Immune, and Metabolic Issues May Be Producing PEM in ME/CFS" - this excellent article, written for patients, is by Cort Johnson, a patient himself and long-time expert in summarizing research for the patient community. It's his layperson summary of a recent research study, "Suppressed immune and metabolic responses to intestinal damage-associated microbial translocation in myalgic encephalomyelitis/chronic fatigue syndrome" (see why we need to Cort to translate this for us?). As Cort explains, the ground-breaking aspect of this study was how it brought together immune dysfunction, gut issues, and metabolic dysfunction and connected them all to the hallmark exercise intolerance of ME/CFS (and long-COVID, too). See the right-hand column for a shorter, simpler summary under "The Gist." This is exciting research! I plan to share this with our functional medicine specialist.
  • "The Paxlovid Possibility: Antiviral Drug Found Protective Against Long-COVID" - another excellent article from Cort Johnson summarizes a recent study from the Veteran's Administration--of 9000 patients!--showing that using Paxlovid early on in COVID-19 infection reduced incidence of long-COVID by 25%. Cort explains the study's findings and what it might mean for long-COVID and ME/CFS in the future. Again, the sidebar labelled "The Gist" provides a shorter bullet-point summary.

That is some really exciting research on ME/CFS and long-COVID, covering some of the biggest aspects of the diseases! The future is looking brighter (and my browser is cleaned up, too). I hope these brief summaries helped to update you on what is going on in the world of research!


Thursday, July 20, 2023

Chronic Illness Vlog 7-16-23: Yeast Overgrowth, Heat, and Best Friends!


My chronic illness vlogs provide an honest view of my life with ME/CFS and Lyme disease, with all its ups and downs!

Last week, I was struggling with yeast overgrowth/candida, a chronic issue for many of us with ME/CFS and long-COVID due to our specific kind of immune dysfunction. Mine flared up three weeks ago, for unknown reasons, in spite of the treatments for yeast overgrowth that I keep up (diet, probiotics, supplements, and medication) all the time. I was still struggling by the end of the week, but I'm happy to report that my doctor returned from vacation this week, prescribed a stronger antifungal medication for me, and I am starting to see some improvements.

On the plus side, last week, I very much enjoyed plenty of quiet solitude at home while my husband was away, and I had a wonderful weekend with my childhood best friend, who came to visit.

You can watch the vlog on YouTube (which also includes notes under the video and links to more information) or below:


I'm planning to write a longer post about my recent experiences with both thyroid issues and yeast overgrowth, when I have more energy. 

How are YOU this week?

Do you struggle with chronic yeast overgrowth/candida?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

Tuesday, March 28, 2023

Quick Chronic Illness Vlog: Great News x 2! Plus Nature.


I didn't record a chronic illness vlog last week, with video clips from my entire week, but on Monday (yesterday), I decided to record a brief video to share some good news!

I think (don't jinx it!) that I am finally back to my "normal" baseline after the terrible (worst in 20 years) relapse that began last September (what caused it and what helped at the link). Here, I talk (and include some photos and video) about a hike this weekend that I managed without crashing.

Even bigger news and a huge milestone for our family ... our oldest son started his first full-time job in his professional career on Monday! He's been sick with ME/CFS and three tick infections for 18 years, since age 10, so this is an enormous step forward for him toward a normal adult life.

You can hear the good news and details for yourself in this quick vlog that also includes some photos and video clips of a beautiful day walking along a local stream - remember that just looking at nature has mental and physical health benefits!



The details of how we each improved to our current level of functioning are all here on my blog - the Treatments tab is a good place to start. I also included more links at the bottom of the video page on YouTube (click Show More below the video).

How are YOU doing?

What was last week like for you?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

Thursday, March 09, 2023

Pacing & Management Guides for ME/CFS and Long-COVID


#MEAction is a great advocacy organization for ME/CFS and Long-COVID that offers a wide range of support and services for patients.

One of their recent projects was developing Pacing and Management Guides for ME/CFS and Long-COVID, with input from patients and medical experts. They have published two guides that are perfect for sharing with doctors and other medical professionals, physical therapists, and schools:

Pacing and Management Guide for ME/CFS and Long-COVID (for all patients)

Pacing and Management Guide for Pediatric ME/CFS and Long-COVID

Both guides provide a medical overview of what ME/CFS and Long-COVID are, a detailed explanation of post-exertional malaise (PEM) and how it limits patients, why exercise and Graded Exercise Therapy (GET) are harmful, tips on pacing, and resources. The pediatric guide would have been SO helpful in thr many battles we fought with our sons' schools to get them appropriate accomodations.

So, check these out, print them, and share them with any medical professionals (or school personnel) you or your child interact with.

Are these guides something that you will find helpful?

How could you use something like this?

Friday, February 10, 2023

Extensive Evidence That GET & CBT Are Harmful to ME/CFS and Long-COVID Patients


That headline should be nothing new to the large and growing population of patients with ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) and long-COVID, also known as PASC (post-acutes equelae of COVID-19). But, unfortunately, far too many doctors and other medical professionals worldwide continue to urge their ME/CFS and long-COVID patients to exercise and/or prescribe traditional physical therapy, in spite of evidence that these practices are often harmful to these populations.

Now, there is a single scientific paper that pulls all that evidence into one short summary: Treatment Harms to Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, published in Advances in Bioengineering and Biomedical Science Research in January 2023.

This paper references nine different research studies or scientific papers previously published that all come to the same conclusion: that forcing patients with ME/CFS or long-COVID (PASC) to exercise makes them worse, and that it is unethical for doctors to choose any treatment path that could be harmful.

Just the fact that this many previous studies and papers have been published--and, as the author points out, as a result, the UK's NHS revised its NICE guidelines in 2020 to reflect these findings--should mean that doctors are no longer causing harm to their patients in these ways. Unfortunately, that's not the case, and doctors all over the world continue to urge their ME/CFS and long-COVID patients to be more active, exercise, and are even still prescribing traditional physical therapy.

So, if you have encountered one of these misinformed medical professionals who still insists on recommending increased activity, exercise, GET (Graded Exercise Therapy), or traditional physical therapy, click that link above, print the brief paper, and share it with him or her. The best way for us to help change these outdated and harmful practices is to help spread the word.

And once you've educated your doctor that exercise and GET are harmful, help him or her to understand how they can help you with real medical treatments instead. My Effective Treatments for ME/CFS (and Long-COVID) summary is a great place to start. The treatments that have helped my sons and I the most are almost all inexpensive and readily available through any primary care doctor/general practitioner (and there are even some treatments you can try on your own, though it's always best to do so under a doctor's supervision).

I've also written some articles on treating ME/CFS and long-COVID that are perfect for sharing with medical professionals because they are brief and include scientific references at the end (and are written so you can understand, too)--and these are the best treatments to start with, for maximum benefit:

Correcting Sleep Dysfunction in ME/CFS

Treating Orthostatic Intolerance/Dysautonomia in ME/CFS (including POTS)

The best part? If you start by treating Orthostatic Intolerance (OI) effectively, then you often can begin to tolerate increases in activity and small bits of exercise, at your own pace while listening to your body and wearing a heart rate monitor. But you need to treat the underlying causes of exercise intolerance (including OI) first.

Help spread the word! Print a copy of this new paper to share with your own medical professionals!

Wednesday, September 07, 2022

Chronic Illness Vlog: Crashed! Why?


My weekly vlog about life with chronic illness (especially ME/CFS, orthostatic intolerance, and Lyme disease) from last week is available now. I had a pretty bad crash week, with most of my days spent in bed, on the couch, and in my recliner. As usual, my analytic brain was hard at work, trying to figure out WHY I crashed, so the video includes my theories and what I might do about it. Plus a few things that made me smile and brightened my otherwise difficult week.

You can watch the video directly on YouTube or I will include it here, too.


The good news is that the past two days have been a bit better for me. I am still struggling with a bit of achiness, but I was able to leave the house yesterday (three times!) and get some writing work done the past two days (I'm starting some new freelance work for Open Medicine Foundation that I'm excited about--more on that later).

So, fingers crossed that this week continues to be better than last. If nothing else, our days of rain and storms should end tonight, and clear skies always help me!

How was YOUR week?

What cheers you up & helps you feel better when you're crashed?

Wednesday, August 17, 2022

Chronic Illness Vlog - A Week in My Life


Now that life is settling back into "normal" for us after July's craziness, I was able to put together another vlog. A vlog is a series of live-filmed video clips (versus a video where I sit and talk about a planned topic). This one covers one week of my life (last week), showing an honest picture of what my week was like.

For me, thanks to many treatments for ME/CFS, Lyme disease, and Orthostatic Intolerance, that means a week of alternating mild activity and periods of rest/recovery. In this vlog, you also see glimpses of my daily routine, including meals and meds/supplements. Our weather finally cooled down a bit, so there are also plenty of nature video clips here!

As usual, you can watch the video on YouTube at this link or I will include the video here:


I would love to hear your thoughts on this kind of vlog-format video! 

Do you enjoy these? Do you find them useful or informative?

Please let me know what YOU would like to see here on the blog and in my videos!

Monday, August 08, 2022

Chronic Illness Vlog - July


Hi, all! Life has been hectic recently, but I wanted to let you know that I tried something new for my YouTube channel. I was inspired by Pippa Stacey of the Life of Pippa channel, who always makes wonderful live vlog videos. She has chronic illnesses and creates these fun, honest vlogs, with video clips from her real life. I always enjoy her videos, so I decided to try it myself!

My first attempt is my Chronic Illness Vlog - July. It was meant to cover one week, like most of Pippa's do, but, well ... life got complicated, as you will see! This vlog includes short video clips of my real life, including good days, bad days, and everything in between. You can watch it here or click the link to watch on YouTube:


I would love to hear what you think of this kind of vlog format. Most of my other chronic illness videos have been more informative types, focused on aspects of chronic illness or coping tips.

So, check it out and let me know your thoughts! Would you like to see more vlogs? Are there other informative topics you'd like for me to cover on video? 

Leave a comment here or below the video on YouTube. You can also connect with me on Twitter or on this blog's Facebook page.


Thursday, April 28, 2022

New Video: Measuring Limits with Heart Rate Monitor & Step Counter


I just posted a new video today, all about Measuring Limits in ME/CFS and long-COVID, Using a Heart Rate Monitor and Step Counter.

You can watch the video on my YouTube channel at the link above or here: 


The video  covers:

  • What is post-exertional malaise (PEM), i.e. a "crash," and what causes it?
  • How is orthostatic intolerance (OI) a part of PEM?
  • How do you estimate your heart rate limits?
  • What should you look for when choosing a heart rate monitor?
  • How can you use a step counter to measure your limits?
  • How do you use both of these tools to stay within your limits and improve your condition?

If you prefer to read, check out my blog posts on:

Heart Rate and Post-Exertional Crashes

Counting Steps: Another Way to Measure My Limits

 And my article that was published on the ProHealth website:

Using a Heart Rate Monitor to Prevent Post-Exertional Malaise in ME/CFS


Tell me about YOUR experiences pacing with a heart rate monitor, step counter, or other tools! I have a new Apple Watch, and I'd love some tips on what to do with it!

Friday, April 08, 2022

Counting Steps: Another Way to Measure My Limits


I finally have some cautiously optimistic news to report, after three long months of post-COVID/worsened ME/CFS hell: I've had some good days--and even good streaks of days--in the past couple of weeks! Of course, I was crashed the past two days, but I was having a really good stretch before that. I'll talk more about recovery from COVID and long-COVID in my next post; I want to be sure of what is working and why.

In the meantime, I thought I'd share a new-to-me approach I've been using as another way to quantify my limits and know when I am doing too much. 

 

Monitoring Heart Rate

In the midst of this post-COVID relapse that worsened my ME/CFS the past few months, I first turned once again to my trusty heart rate monitor. Typically, I do well enough with treatments that I know I am within my limits most of the time, and I only wear it when I am doing something particularly active, like taking a walk or going shopping. But with feeling crappy most of the time and crashing badly multiple times each week, I strapped it on and wore it continuously for a week or so, anytime I was awake. It confirmed what I suspected: my heart rate was higher than normal, and simple activities I could normally tolerate fine were now putting me over my limit and causing a post-exertional crash. Just being aware of that helped me to decrease my activity level, stay within my limits more, and reduce those crashes.

You can learn more about how to use a heart rate monitor to prevent post-exertional crashes in my blog post


Counting Steps

About that same time, I learned about another way to measure my activity level. Now, don't laugh, but I only just got my first smart phone in summer 2020, an iPhone, so I am still learning about all the cool stuff that comes with it. I was reading an article (in AARP Magazine!) about what you can do with a smart phone, and it explained that iPhones come with a pedometer app in the Health button (a white square with a red heart in it on the home screen).

So, I began carrying my phone in my pocket with me all day long (I was normally leaving it on the kitchen desk while I was at home). I found that tracking my steps gave me another way to quantify my exertion level each day.

Of course, as with everything else (including heart rate monitors), we with ME/CFS and long-COVID use these tools differently than "normal," healthy people. As you know from TV, magazines, newspapers, and the internet, there are all kinds of encouragements to increase your steps, to aim for 5000 or 10,000 steps a day to improve your health! Instead, I use it to monitor and stay below what I have figured out is too much for me.

First, I just carried it in my pocket every day and checked it the next morning. How many steps did I take the day before? Did I crash or do I feel OK today? I quickly came to find that during this worsened period, I could handle 2000-2500 steps a day, maybe even 3000, if I kept my HR below its limits and felt good. Approaching 4000 steps a day, though, was my danger zone; I'd almost certainly crash the next day. I was surprised to find that even on a bad crash day, I still often took 1500 steps, just inside my house (we have a large house with a lot of stairs).

Again, I know I have been in worse shape than usual since I had COVID in January, so I don't know what my "normal" limits are. But having an idea of my current limits gave me another tool to try to stay within them.

The Health app on the iPhone also graphs your daily step data for you.

Here are my steps so far today (I took a walk this morning, clearly shown by the spike):

 


My steps this past week--you can easily see I was crashed yesterday!


My steps for the past month--Those days over 4000 almost always correspond with a resulting crash the next day:


And, even though I only started carrying the phone in my pocket in the past two months, I still found the last year's data interesting (the phone was usually in my purse or pocket anytime I left the house):

 


The monthly averages clearly show that I was doing quite well last May, before I got my two COVID vaccines, which set me back a bit. Then, my activity level gradually increased from July through December, when my 22-month relapse finally ended. You can very clearly see the month I had COVID in January--I barely moved from the couch or bed! And since then (and since I began carrying the phone all day), you can see a gradual increase in my activity level, which corresponds to a gradual improvement in how I'm feeling. Cool, right?

Using my phone as a step counter is just another tool to help me quantify and measure my limits so I can better stay within them and prevent post-exertional crashes. I actually have a beautiful new Apple Watch that my husband gave me for Christmas that should make this even easier (as well as monitoring my heart rate, which was its primary purpose), but I still need to figure out how to set it up and use it! Maybe I can manage that now that I'm beginning to feel better.


Do you count steps or monitor your heart rate? 

How else do you use technology/your devices to help measure your limits or otherwise help with your ME/CFS or long-COVID? 

Let me know since I now have a new device with lots of cool features to learn!

Wednesday, August 04, 2021

Weekly Inspiration: A Plan B Day


One of the chapters in my book, Finding a New Normal: Living Your Best Life with Chronic Illness, in the section on Daily Living, is called "A Plan B Day." It describes a simple premise that really changed my life and allowed me to stop fighting against my illness's whims and listen to my body. I recorded a short video yesterday to explain the concept, with some simple steps to follow for those days when you wake up with plans but a body that is in can't-do mode:

 

(Or you can watch it on YouTube here, where you can also Like and comment on the video, plus subscribe to my channel for more videos).

And then ... I woke up today with a list of errands I planned to take care of ... and feeling completely wiped out!

As usual, I started out thinking, "but I have to ...," but then I realized I should take my own advice! I thought about each of the stops I planned to make and decided I could put it all off until Friday (Thursday I have a dentist appointment). I went downstairs for breakfast, told my husband it was a Plan B Day (he knows what that means!), and he said he could grab a few urgent items from the store this afternoon. With my Plan B in place, I settled into the couch, with my super-soft comfy blanket, rested all day, and listened to my body. Hey, it really works!

Check out the video and then tell me about YOUR experiences with days when your body just won't cooperate with your plans and if you've tried making a Plan B (or whatever your own process is!).

You can find more information on my book here.

Wednesday, March 31, 2021

How To Nap


NOTE: I also made a video on How to Nap, if you prefer to watch rather than read.

For many of us with ME/CFS (myalgic encephalomyelitis or chronic fatigue syndrome) or other chronic illnesses, a daily nap (or at least an occasional nap) is a fact of life. We can't create enough energy in our cells overnight to keep us going all day and need to recharge partway through the day. As I was settling down to nap yesterday, with all my various routines in place, I realized that my many years of experience as a champion napper might help others better learn how to get that mid-day rest they need.

NOTE: Sleeping at night is a different story, due to the sleep dysfunction of ME/CFS, which is caused by endocrine (hormone) dysfunction. This can be treated (without sedatives); my son and I have both had solid, natural, refreshing sleep 8-10 hours a night for over 15 years now. For details on how to correct sleep dysfunction, see Correcting Sleep Dysfunction in ME/CFS and Long-COVID, based on my article for ProHealth (excellent for sharing with doctors). That said, all of the tips below will help with nighttime sleep, too; they just won't be enough on their own to restore the deep stages of sleep you are missing.

I began taking a daily nap--every day, no exceptions--shortly after my diagnosis, a little over a year after first becoming ill in 2002. I read a memoir/nonfiction book, Chronic Fatigue Syndrome: A Comprehensive Guide to Symptoms, Treatments, and Solving the Practical Problems of CFS by Gregg Charles Fisher (with contributions from several doctors). I had spent a year looking for answers and finally had a name for the disease that had stopped me in my tracks. This book brought me to tears, finally recognizing my experiences in someone else's words. Fisher does a great job of describing his own (and his wife's) personal experiences, but he also talks about the science and medicine behind the disease (what was known at the time) and practical tips for living with it. Just learning about exertion intolerance/post-exertional malaise (PEM) changed my life.

One of the concepts Fisher talks about in the book that was eye-opening to me was the idea of proactive rest, of resting before you crashed. He describes how learning to rest before he completely runs out of energy greatly improved his quality of life. Since my first year of ME/CFS had been marked by huge ups and downs and the pattern of feeling better, getting active, then crashing badly again, I realized this could really help me. That's when I began napping every day.

So, with 18 years of daily napping under my belt, here are my hard-earned tips for a good, restful nap:

REALLY Rest

I found out early on that lying on the couch, reading, or watching TV did not help my body to recover for the rest of the day. I had to truly rest, in bed, with my eyes closed. In fact, as you'll see below, the preparation for a nap will eventually become a habit that will help to tell your body that it's time to shut down for a bit.


Make the Room Dark, Cool, and Comfortable

Experts and doctors have proven that 60-67 degrees F is the ideal temperature for solid, refreshing sleep, so make sure your room is dark and cool at naptime. How do you do that at mid-day? I nap in my bedroom and close our room-darkening blinds (room-darkening, insulated curtains work well in my son's room). In the summer, it is hard to cool the 2nd floor, where our bedroom is, enough for a daytime nap, so I turn the air-conditioning down temporarily and turn on a fan. Our son (the fan expert!) likes these little turbo fans and really loved this taller multi-fan unit for maximum air circulation when he was in college. When it's really hot out, and our bedroom is just too warm, I nap in our finished basement, which is always cool (and dark). The cool temperatures really help.

Like anyone, when it's not too hot, I like my bed with plenty of soft pillows and comfy blankets. Like many with ME/CFS, I have trouble regulating my temperature and tend to be too hot a lot of the time, so layered blankets that can be adjusted are important.


Help Your Body Relax

Every afternoon before my nap, I take two valerian/lemon balm tablets and two magnesium capsules. Valerian is an herb with mild sedative properties, like chamomile; it just relaxes you and makes you a bit sleepy. In fact, chamomile is another great alternative, especially a warm cup of chamomile tea before your nap. We like Celestial Seasonings Sleepytime Tea. But, since I already have trouble with having to pee every 30 minutes (part of Orthostatic Intolerance, our bodies can't hold onto fluids), I just take the valerian tablets. Warning: valerian is very stinky! That's why I avoid the regular capsules and like these coated tablets, which also contain lemon balm, another calming herb.

As for magnesium, people with ME/CFS need a lot of it anyway; it helps with neurological symptoms, pain, headaches, and cognitive function. It also helps with sleep. However, you have to choose the right types. The kinds usually sold at the drugstore--magnesium oxide and magnesium citrate--are poorly absorbed and cause diarrhea. In fact, magnesium citrate is often used for colonoscopy prep! So, yeah, skip those or you'll spend naptime in the bathroom. Instead, opt for types that are well-absorbed, like magnesium malate, magnesium glycinate, and magnesium l-threonate. That last one is the only type of magnesium that crosses the blood-brain barrier (i.e. gets into the brain), so it is especially good for cognitive function and neurological issues--it even helps with dementia.

These gentle herbs and magnesium just help me to relax and get sleepy. For me, they wear off pretty quickly (I usually read for 20-30 minutes and nap for 45-60 min), but you can experiment to see how they work for you. They can help make you sleepy before bed at night, too.


Wear Warm Socks

OK, this one sounds weird, but hear me out. I read a study (it's science!) that keeping the feet warm helps you to fall asleep faster and sleep more soundly. I tried it and it works! Now, every afternoon before I get into bed (except on the hottest days), I put on soft, warm, fuzzy socks (they make them for men, too); I just pull them on over my regular socks. I usually read at the start of my nap, and within 15 minutes, I start to get really sleepy. It works!


Sensory Deprivation

Another way to make things dark is to wear an eye mask of some sort. My husband got me a nice eye mask/ear plug set for travel for Christmas, and it's super-comfy (I was using a very old freebie I got on an overseas trip about 15 years ago that had no elastic left in it!). However, when I'm at home and in bed, I prefer not to have that strap around my head, so I just use a men's size soft, dark sock. I just "borrowed" one from my husband, but this is the kind I use. Since I sleep on my side, I just lay that over my eyes, with the leg part over my head; it's soft, comfortable, and not at all restrictive. My mom likes this kind of eye pillow, filled with lavender (another calming herb).

I struggled for years with traditional foam earplugs. I know they work well for some people, but I have small ears, and I can never get them situated just right. Then, I read about silicone earplugs: life-changing! They are little blobs of silicone that come in a case (usually a dozen). You take one out, roll in around in your fingers and mold it into your ear so that it fits perfectly. Plus, the silicone is much better at reducing noise than the old foam-style. Whether you are blocking out lawn mowers and garbage trucks at home, ambient noise while traveling, or a snoring partner, silicone ear plugs work really well.


Settle Down

With all that prep in place, now it's time to help your body relax and settle down to get ready to rest. For me, that means reading, but you might listen to calming music or an audiobook (probably best to avoid Stephen King at naptime). I darken the room and turn off the lights first and use a headlamp to read: another signal to my body that it's naptime.

This would also be a great time to meditate, in whatever way works for you. I do this after I put my book down and lie down with my eye sock on and my earplug in. You can repeat a calming mantra to yourself; focus on tensing and releasing each muscle in turn, from your toes to your head; or even just focus on slow, deep breathing. Most experts recommend a slow 4-count inhale through the nose, hold for 3-4 seconds, and then a slow exhale. This kind of breathing is often all it takes to send me off to dreamland. I find it also helps to tune in to my senses. Of course, I have covered my eyes and plugged my ears, but sometimes I can still hear rain outside or the fan, and focusing on what I feel (soft pillow, warm feet, comfy bed) helps. There are also some great guided meditations available (choose a short one pre-nap) and loads of apps now, like Calm.


Can't Sleep? That's OK.

Although this routine usually puts me to sleep for about 45-60 minutes (90 minutes if I'm having a bad day), some days, I just can't fall asleep, even though I know I need it. I might have something on my mind or am just feeling restless. 

On those days, I remind myself that if I can't sleep, then simple rest will still do me some good. I continue my "settle down" routines: deep breathing while I count the slow inhale/exhale, meditation, tuning in to what I feel, tensing and releasing muscles. I might end up falling asleep ... or I might not, but at least I had some time in bed, totally relaxed, in the dark and quiet, to allow my body to recharge a bit for the rest of the day.

Wake Up!

A routine can help when your nap is over, too. I usually wake up because I have to pee (again), so that gets me out of bed. After I use the bathroom, I splash cold water on my face and eyes for a few minutes, which helps to revive me. I put my contacts back in and head downstairs for my "after nap meds." With help from our dietician, I arranged my daily supplements so that some of the more-stimulating ones (things that help improve energy) are in the after-nap box. I usually also have a cup of herbal tea with a wakeful flavor/scent, like Celestial Seasonings Lemon Zinger. In the summer, I might have a glass of decaf iced tea with lemon in it.

Finally, it is very important to get some daylight, if possible, to help your body recognize that it is wakeful time again. I don't have the energy for a full walk in the late afternoon (my beta blocker is starting to wear off by then), but I usually walk out to the mailbox or slowly walk around our cul-de-sac, just a little outdoor time to help my body shift out of nap mode. When the weather is nice, I like to sit out on our deck in a reclining chair. Nature and the outdoors are very important to my well-being: just watching the clouds or listening to the birds rejuvenates me. I might bring my laptap out there with me or, on a bad day, my book.


That's how I nap every day! My nap is an essential part of my daily routine. It not only helps to prevent me from overdoing and crashing later, but it recharges me so that I have the energy to write a blog post, make dinner, and enjoy the evening with my family. Without it, I'm a puddle by 3 pm.

And now it's time to make dinner--thank goodness for my nap today!

Friday, January 29, 2021

My Progress in 2020 and Goals for 2021


It's time for my annual New Year's post, summarizing some of the progress (or lack of!) I made last year and my new objectives and targets for 2021.

As I explained in my Happy (Almost) New Year post last year, I developed my own process for setting lifetime goals and then specific objectives and targets to move me toward those goals each year, then I adjusted that process after I got sick. You can read all the details (with links to more information) in that earlier post. This is a process that anyone can use - the types of goals, objectives, and targets you have will just naturally reflect your own lifestyle and limitations, while helping you take small steps to do the things you want to do, whether that's improving your health or taking better care of yourself or learning a new hobby or staying in touch with family and friends or ... whatever is important to you! For those of us living with chronic illness, it's all about small steps in the right direction, not overwhelming New Year's resolutions.

So, here's my own summary - you can look back at my post My Progress in 2019 and My Goals in 2020 for details on last year's objectives, but I will try to sum those up here, too.

My Progress in 2020

I have 6 Lifetime Goals that represent what I want my life to look like.

My Lifetime Goals:

  1. To nurture and enjoy strong, fulfilling relationships with my husband, my sons, my family, and my friends.
  2. To be a writer, writing about topics I enjoy and am interested in and getting paid fairly for my work.
  3. To spend time outdoors and to travel, doing activities I enjoy and that rejuvenate me, and sharing those experiences with friends and family.
  4. To create and maintain a comfortable and happy home environment - both physically and financially - that contributes to happiness, comfort, and loving relationships.
  5. To be as healthy as I can be and to take care of myself so that I can do the things I want to do.
  6. To give back, help other people, and be part of a community.

SO THAT, I feel happy and content and can spend my time doing things I love.

Each year, I set (or adjust or keep) objectives and then specific, measurable targets to help me move toward those goals. The process is explained here.

I'll skip the details and just share some of what I achieved (or not) in 2020. 

First, A Word on 2020:

Last year was, of course, an unusual year. For me, though, the pandemic was less of a disruption (mostly normal life for me, staying home a lot) than a sudden and still-unexplained downturn in my health starting in March 2020 that I am still struggling with. If you read my progress summary from 2019, you will see that I was doing quite well physically, managing things I hadn't been able to do in many years, with an almost-elimination of post-exertional crashes (due to a wide range of effective treatments found over the years). With this worsening in 2020, I lost much of that progress (temporarily!) with much-reduced stamina and a return of crashes due to mild exertion and far more bad days than good. At this point today, I'm quite sure a flare-up of my Lyme disease was partly at fault and likely some other sort of infectious trigger, too. I am working with my doctors to better treat my Lyme and to uncover the other infectious culprits.

What I Improved on or Did Well in 2020:

  • Successful Book Launch: My biggest accomplishment of 2020 was publishing my book, Finding a New Normal: Living Your Best Life with Chronic Illness, in early February, on a broad range of e-book platforms and with the print book sold on Amazon. 
  • Successful Child Launch: Both of our sons moved out on their own in the second half of 2020. Our youngest graduated from college, started a new job, and moved into his own apartment locally. Our oldest, the one with severe health problems, is not yet completely independent, but he moved out of state and took a big step forward, which seemed impossible a year before. Both are happy and well-adjusted adults.
  • In 2019, I noted that I spent lots of time with my husband, meeting my goals for date nights, walks*, and traveling together. ha ha - I had no idea what was coming! My husband hasn't been to his office since March 2020, and we have been together 24/7 since then. While there has been some friction here and there, I did surpass my goals for time spent together with him and enjoyed most of it! We also got to spend a lot of time with both of our sons.
  • Updated our will (a biggie we'd procrastinated for years, considering our younger son was still identified as "baby #2" in the old documents).
  • Learned some new things about book publishing and promotion that seemed horribly complex to me at first.
  • Getting outdoors more often (my goal is daily, even if it's just 10 minutes lying on our deck), which was a big lift for my spirits on all those sick days.
  • Daily yoga (brief 15 min session, all done on the floor) to help prevent injuries and ease aches.
  • Helped my 95-year-old father-in-law stay connected (a big challenge last year) with outdoor visits, phone calls, and introducing him to Facetime.
Needs Improvement:
  • Stay connected to my family and friends.
  • Freelance writing (which took a backseat to my book the past two years).
  • Create e-mail lists for my blogs.
  • Stay off social media in the morning and improve productivity (last year was a bit of a black hole!)
  • Decluttering and improving our home.
  • Getting to the bottom of the 2020 worsening and trying new treatments to get back to where I was.
  • Resume travel and camping, as able (we are limited both by the pandemic and also my FIL's needs).
  • Get back to regular walking * and light weights * as my condition improves and my stamina returns (already seeing signs of that with new Lyme treatments).
  • Resting when crashed - a continuing struggle for me, to listen to my body.
  • Have more fun! Another one that pops up every year. I need to take more time off and probably reduce my load.
* NOTE:  My exercise is NOT Graded Exercise Therapy (GET), and I am ONLY able to exercise because of several treatments for my ME/CFS that have eased the exercise intolerance somewhat, including treating Orthostatic Intolerance and treating immune dysfunction. I still definitely have limits and use a heart rate monitor to help stay within my limits and prevent post-exertional crashes. Other treatments have helped as well - you can read my full summary of treatments that have been most effective for my son and I, allowing us to live active lives again. 
 
 

My Health in 2020
I am a data junkie, and find it very helpful to track several different aspects of my illness. This helps me to see if I am doing better or worse and also helps me to evaluate whether new treatments are helping. So, in 2020, the data clearly shows that downturn I experienced:
  • My average exertion level (on a 1 to 5 scale) was 3.5, down 7% from 2019 (which was my most active year since getting sick in 2002).  This was due entirely to that downturn in my condition in March.
  • Overall, my "how I felt" average was 2.6 (a 1 to 5 scale where 1 is great and 5 is badly crashed). This is again down 7% from the previous year.
  • I was crashed (a 4 or a 5 on my scale) 17% of the time. This was a 12% downturn from the previous year and shows more clearly how much worse I was. In 2019, I was only crashed 5% of the time, my best year ever. 2020 was my worst year since 2009 (before I started many of the treatments that helped me to improve so much). Add to this the fact that I had a lot of days last year when I was a "3" - not severely crashed but super-achy and run-down and quite limited in what I could do.
How do I know all this? Like I said, I like data! I keep track of how I feel each day on a 1 to 5 scale (1 being great & 5 being badly crashed/bedridden), as well as my exertion levels (also 1 to 5, with 5 being most active). I just jot those numbers on a calendar (see photo above) at the end of each day, along with any unusual symptoms, new treatments, etc. So, I've been tracking these numbers, with monthly and yearly averages, since I first got sick in 2002. I also look at % of time spent crashed (a 4 or 5 on my scale). This data also helps me to tell whether a new treatment is helping. If you're not as analytical as I am (I suspect few people are!), you can just jot down the numbers and notes at the end of each day and use it to see patterns in push-crash, whether a new treatment is helping or not, and other information to help manage your illness day-to-day.

Objectives and Targets for 2020
With my process, my Lifetime Goals mostly stay the same, but my specific objectives and targets may change from year to year (or even month to month).

Many of my objectives and targets do stay the same from year to year, like date nights with my husband (mostly in the house now!), time with my friends, resting when my symptoms flare, etc. My writing objectives for 2021 are quite thorough (a new approach for me), but I won't bore you with all those details. I did get some new inspiration from the book Make Time, which is not about doing more (not all that helpful when you have limited time and energy) but about focusing on the important things. One thing I started years ago was using colored index cards (see the photo at the top of the post) to list a few priorities for each day, to help me stay focused. It forces me to start the day by evaluating what's important, and I can carry the card around with me during the day.

Here, I will just highlight the objectives and targets for 2020 under my Health goal:

1. Try New Treatments & Investigate Downturn - while trying new treatments is an objective every year, this year I am focused on figuring out what made me so much worse last year and getting back to where I was. I've already taken a big step in that direction by seeing my son's Lyme specialist, starting some new treatments for that, and getting dozens and dozens of tests done to look for other infectious culprits behind the scenes.

2. Improve Stamina and Become More Active - (contingent on #1, above, to improve my condition and thus my exercise tolerance). And, only possible because I first treated exercise intolerance.
  • Walk at least 4 times a week (some of my "walks" currently are just a slow 10 minutes around our cul-de-sac)
  • Increase walk time, as able.
  • Continue yoga floor routine, 10-15 minutes per day.
  • Try 30-minute yoga once a month (as able - I managed it before I got worse last year).
  • Muscle-building, 3x per week, as able (on floor to reduce heart rate) - will have to slowly get back into that routine, as my exercise tolerance improves again.

3. Reduce Stress, Improve Rest, and Take Care of Myself -
  • Rest when symptoms flare (3 or higher on my scale)
  • Do 2 quiet things just for myself each week (no multi-tasking!)
  • No computer after 7 pm
  • Do 2 fun things each week that are not TV
  • Take one "day off" each month

We are each at very different places in our illness journeys, even when we have the same illness, so your goals, objectives, and targets will necessarily be different than mine, but I hope that sharing my goals and progress with you will inspire you to embark on a similar process for yourself. Focusing on baby steps in the right direction helps me to actually achieve my goals, instead of looking back at the end of each year and realizing that nothing changed (which is what I used to do!). Each week, I track how I did versus my objectives and re-adjust for the coming week. And, of course, Listening to My Body is always Objective #1!

Have you set any goals or objectives for yourself for 2021? How was 2020 for you? Please share in the comments below! 

Here's to a happy & healthy 2021 for us all, no matter how you approach it!