Life with ME/CFS is always unpredictable! My last post here was 2024 Year in Review: Still Riding the Chronic Illness Rollercoaster! That was not only a summary of how I felt last year and what caused challenges for me but also a long list of treatments (old and new) that I tried or changed last year, what worked and what didn't. Since then, I recorded a video version of that post, so if it was too much for you to read--or you just have an easier time with video--you can watch my 2024 Year in Review (including the treatments I tried) on YouTube or below:
Once I had finished summing up last year, I was finally ready to start planning and setting goals for 2025 ... in February!
I've written and talked extensively about Setting Goals When Chronically Ill: Improving Your Life in Tiny Steps. You can read the full chapter excerpted from my book here on the blog or watch the video version of it.
But this year, I was feeling overwhelmed by it all, especially since I didn't even start thinking about the new year until we were a month into it! I expressed these frustrations in a video, How Do You Juggle It All? Without Feeling Overwhelmed. Based on the comments, I think a lot of people--both healthy and sick--could relate to my feelings. Watch it on YouTube or below:
My own goals process had become more and more complex over the years, so this year I decided to take my own advice! I focused on only a few objectives for each of my Lifetime Goals and really tried to narrow my attention to tackle that feeling of always being overwhelmed. And to keep my limitations in mind.
Given the ups and downs in my health last year, health remains a big focus for me (of course). I also got rid of perennial goals that have become a part of my normal routine, like diet, walking (when I am up to it), daily yoga stretches, and resting when I crash. What I was left with, under my goal of optimizing my health (given my illness) was:
- Set up mold inspection & follow-up on results
- Continue to avoid infection risks
- Find new primary care doctor (mine of 23 years just retired!)
- Talk to my ME/CFS specialist about my changing immune dysfunction
- Try therapy for dysfunctional family relationships
I have similarly streamlined goals for the other areas of my life, with a big focus on traveling more this year with my husband and our camper.
Things were going quite well with my new approach, and I was feeling less overwhelmed and stressed. Then, a few days ago, some viral symptoms started. I haven't had a cold or other everyday virus in 20 years due to my immune system over-reacting to most viruses. I immediately thought it must be COVID (which is in a class of its own, plus I don't make many antibodies against it). Three days in, I still feel like I have a cold. It's not nearly as severe as my bout of COVID last summer (and I've had two negative tests so far). I am completely mystified because this just doesn't happen to me, but I am hopeful I will recover in a short-ish time.
Meanwhile, I am resting a lot, ditching all those carefully thought-out plans for the moment, and being very, very cautious. I'm following my own advice and upping the doses of all my herbal anti-virals. I have no idea what's going on with me, but I'm hoping for the best. The first of our month-long road trips is supposed to begin in less than a month, so fingers crossed!
2 comments:
Hi,
Thank you so much for creating this blog and sharing everything you’ve learned and tried. I’ve had m.e for 6 or so years after mono, which kind of went away to a large degree, I did a PhD full time, and was very physically active but with constant severe insomnia. Four months ago I went from very mild to completely bedbound for 2 months (no idea why). Ive started to get functionality back, however have been too scared to engage with m.e resources and literature because of the often negative narrative of there being no treatment. Reading your blog of active steps that can be taken to make improvements has actually given me real hope for the future that things can get better, and that there can be quality of life.
Thank you so much for creating this - going to digest the posts over the next few days.
Welcome! I'm so glad you found my blog when you needed it :) Very sorry to hear of your relapse but glad you are beginning to recover from that. I had a similar "mystery relapse" last year for 3 1/2 months - I still have no idea why it started or why it ended! Very often it's some sort of infectious trigger that we were completely unaware of but that sent our immune systems into overdrive again. That is the most frustrating part of ME - the uncertainty and unpredictability. But yes, I tend to be quite analytical and action-oriented in terms of treatments! The best place for you to start is by clicking on the Treatments tab at the top of the page. That's a summary of ALL the different kinds of treatments that have helped us over the years - many are inexpensive and readily available, but few doctors know how to treat this disease. That means we have to advocate for ourselves and ask for what we need - and often educate our doctors! Since insomnia is a big issue for you, I recommend you start with correcting the sleep dysfunction that is a part of ME - this helps everything else! Good luck, and please let me know if you have any questions -
Sue
Post a Comment