Living With ME/CFS
774 FOLLOWERS
I am Suzan Jackson. I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. This blog is about how our family lives with chronic illness, with a focus on living and enjoying our lives in spite of these challenges.
Living With ME/CFS
18h ago
Today is Giving Tuesday, a day devoted to giving back, after the commercial excesses of Black Friday and Cyber Monday. Every little bit counts, even if it's only $2 or $5. If you, like me, spent way too much shopping online for the holidays yesterday or you just want to give year-round, you can even set up a recurring donation. That's what I did years ago with OMF (see below) so that $5 was automatically donated from me each month, and last year, I increased it to $10 a month. I don't have to think about it or do anything else, and my donation now adds up to $120 a year! It only takes a few m ..read more
Living With ME/CFS
18h ago
It's now been three weeks since my COVID infection struck, on top of ME/CFS, and I am still struggling. Many of the viral symptoms have improved (though I still have a lot of mucus), but I am still severely lacking in energy and stamina. I am now able to sit up for short periods of time most days, so that's an improvement. But, I am mostly still living life from my "couch nest," lying down a lot, and sleeping more than usual.
My writing energy is still very limited, but I did put together a vlog last week, so I thought I'd share that with you. It's hard to see any changes day-to-day because ..read more
Living With ME/CFS
18h ago
The problem with a blog is that older posts kind of get buried, and my blog is now over 18 years old! So, I wanted to write a new post that directs you to all of my main treatment posts, since that is the topic that people with ME/CFS and long-COVID are often most interested in. For a more detailed explanation of each of the topics below, check out the Effective Treatments tab at the top of the page. That is also a guideline of all the treatments we have found effective, but I thought it would be helpful to write a current post to bring it to more people's attention.
(NOTE: Everything mentio ..read more
Living With ME/CFS
2w ago
I've been stuck in a mysterious relapse of my ME/CFS for the past month. I've had flu-like aches every day. I thought that--like last fall--it was due to yeast overgrowth flaring up again, but stronger antifungals and a stricter diet aren't having the effect I'd hoped. I'm a little better, but still achy. Since that is an immune symptom that is a warning sign for me, I have been lying low, not going out much, no walks, and spending a lot of time on the couch ... and in my reclining chair on my deck.
I made a vlog last week that gives you a peek into my life with chronic illness during a down ..read more
Living With ME/CFS
3w ago
I'd heard about this new movie with the funny name on Pop Culture Happy Hour podcast, where all the hosts and guests were enthusiastic about it. Plus, it stars our tiny state's hottest star, Aubrey Plaza. So, when my husband and I heard this weekend that My Old Ass was now on Amazon Prime, we decided to watch it. It exceeded our expectations!
Eighteen-year-old Elliott, played by Maisy Stella, loves her family and friends, but she can't wait to leave her tiny hometown and her family's cranberry farm in rural Ontario. In just three weeks, she heads off to the University of Toronto, and she can ..read more
Living With ME/CFS
3w ago
Hey, chronic illness spoonie friends! Earlier today, I was updating and sharing an older post of mine from 2019, Weekly Inspiration: Laugh!, when I realized it's been a long time since I've written a new Weekly Inspiration post and I could really use some laughs right now.
After feeling the best I have felt in years during the first six months of this year (not a single crash day!), getting COVID in July, and slowly crawling my way back from that over the next three months, I was doing pretty well by September and back to enjoying some camping trips with my husband. But for the past th ..read more
Living With ME/CFS
1M ago
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 f ..read more
Living With ME/CFS
1M ago
I thought I'd combine a quick personal update with sharing my latest camping vlog. This past month has been so busy here! I love fall with the cooler weather (ME/CFS has made me so heat intolerant) and brilliant foliage, but it seems to be flying by. We did manage a nice, relaxing 9-day camping trip at the end of September, with stops in two beautiful state parks in New York (check out my vlog from the trip) to make up for having to cancel our July/August vacation due to my slow recovery from COVID.
Kayaking on beautiful Gilbert Lake in NY
My husband and I celebrated our 35th ..read more
Living With ME/CFS
1M ago
If you or a loved one are among the 25% of ME/CFS patients who are severely affected by the disease and mostly homebound or bedridden, there is a webinar series that you and your caregivers may find helpful. Solve M.E., one of the primary research, patient support, and advocacy organizations in the U.S., is hosting a 4-part series covering care, patient rights, medical care, and advocacy for these most severe patients.
Part 1 on Caregiving has already aired on October 9 and will be available to view on their website or on YouTube (it's not up yet but should be soon). The next 3 parts are sch ..read more
Living With ME/CFS
2M ago
The greatest danger of COVID--for everyone--is that it can cause lingering, long-term or permanent effects. Research (and much experience over the past four years) has shown that COVID often causes damage to the heart and/or lungs, blood clots that can lead to serious, even fatal, issues, and a cluster of severely debilitating symptoms now known as long-COVID (or PASC, post-acute sequelae of COVID). Long COVID symptoms/characteristics can include a long list of serious issues like flu-like symptoms, fatigue, cognitive dysfunction, muscle weakness, shortness of breath, microclots in the blood ..read more