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.


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