I finally finished editing and uploaded my own Day in the Life with Chronic Illness video, showing you a glimpse into my life with ME/CFS, Lyme disease, and OI (POTS and NMH).
As I mentioned in a recent Weekly Inspiration post, I enjoy watching chronic illness "slice of life" videos on YouTube. These are the videos that provide a glimpse into someone else's life with chronic illness. Some are Day in the Life videos, capturing a single day, and others, like the Chronically Jenni Weekly Vlogs I highlighted in that earlier post, cover more time.
What I find interesting and inspirational about these kinds of videos is their honesty and authenticity. As opposed to what you normally find online and on social media, these chronic illness videos almost always show the unvarnished truth, in this case about what life with chronic illness is like: the good, the bad, and the ugly. I find it comforting to see someone else do something small, like meet a friend for lunch or go to a store, and then have to lie on the couch afterward--I feel bad for them, but it means I'm not alone! There's comfort in community, in knowing that others face similar challenges as you do ... and are managing their own version of life and happiness.
So, for all of these reasons, I recorded my own Day in the Life with Chronic Illness video. You can watch it on YouTube at the link (and be sure to "Like" and leave a comment, if you want), and check out the Notes below the video on YouTube. And I will also embed the video here:
As I explain in the introduction to this video, I recorded it on a day when my husband was out of town (a rarity these days!) but otherwise, it was a pretty typical day for me. I wasn't crashed, and I was able to manage small bits of activity, with periods of rest in between. I tried to include everything in my daily routine, to give you a glimpse into my life with ME/CFS, Lyme, and OI (POTS and NMH) and the many kinds of self-care that help me. Since I enjoy the honesty and authenticity of others' videos, I tried to give you the same thing here ( I even started recording when I first woke up!).
Finally, as I mention in the video and in the notes below it, I am only able to manage the level of activity and functioning shown in the video because of the treatments I have found over the past 19 years that have helped both me and my son to feel better, tolerate more exertion, normalize our immune systems, prevent and lessen crashes (flare-ups), and overall improve our quality of life. For more information on Effective Treatments for ME/CFS (most of which are readily available worldwide and inexpensive), click on that link to the page here on my blog and/or check out the Notes below the video on YouTube.
And I would love to hear about YOUR life! What is similar or different than mine? What things help you to manage life with chronic illness?
Tell me about your own daily life in the comments below.
4 comments:
Hi Sue, I have appreciated your information on fatigue topics and supplements for many years. I have a long standing fatigue problem which is still undiagnosed despite many tests and theories. Recently I have been hearing about high dose thiamine as a treatment for mitochondrial fatigue among other things so I searched your blog to see your take on it but haven't found anything. Specifically on the blog:
hormonesmatter.com, but also in studies like this: https://www.healthrising.org/blog/2021/04/15/thiamine-b-1-chronic-fatigue-syndrome-fibromyalgia/?fbclid=IwAR1EPtybrm_qtr6HBfxCt6ghAmVCS5blLESJABDlt1NQVpqb2_CXfkl0aPo there appears to be increasing evidence that low thiamine can be a key factor in many fatigue related problems. I would appreciate your view on this since I respect your ability to assess fatigue problems and treatments....thanks, Claudia
Hi, Claudia -
Thanks for taking the time to leave a comment.
I have been hearing about those same thiamine studies! I talked to our Lyme specialist about it, and she pointed out that we already take a form of thiamine - benfotiamine. It is a form that is more easily absorbed. After hearing about the studies, I doubled our doses but didn't notice any change.
As for your diagnosis, the key characteristic that identifies ME/CFS is an intolerance to exercise or exertion, known as Post-Exertional Malaise (PEM), a strange-sounding term that means that even mild exertion causes a sudden relapse or "crash." So, for instance, maybe one day you're feeling a bit better and do something mildly exerting like going shopping, or even just taking a short walk. With ME/CFS, PEM kicks in and anywhere from 1 hr to usually 24 hours (sometimes more) after the exertion, you suddenly feel a lot worse, as if you have the flu perhaps - all your "usual" symptoms would worsen. In contrast, most people with other fatiguing conditions (fibro, depression, etc.) actually feel better after exercise. You can try this quiz:
https://solvecfs.org/do-i-have-mecfs-quiz/
Hope that helps! Let me know what you find out!
Sue
Hi Sue,
I successfully joined the parents' of ME/CFS support group and have been searching through for other treatment options that I might have missed these past three years!
I want to thank you again for doing such a great job on detailing treatment protocols on your blog! Because of another parent's question about OI and your response (linked to your blog), I reconsidered our "failed" attempt at Florinef. I believe now that the children were not on a high enough dose for long enough! Also, I emailed our pediatrician the protocol that was listed by Dr. Rowe for the potassium chloride, bc that was always a concern of mine. So, thank you! I really think this will be a game changer for our children!
Two quick questions: did you ever experience any nausea with the olive leaf extract when taking it with the LDN?
And, I guess I should ask this on the support group also, but do you know anyone with a child that has a mycoplasma co-infection that is difficult to heal? Our daughter has been on 3 months of doxycycline, and it is not killing it. We just switched her antibiotic. She has been severely ill these past three years with it; she is mostly bed bound.
Thank you, Sue!
Hey, Tammy -
So glad you joined the Parents' group and are finding it helpful!
Ah, yes, what you are discovering about Florinef is true of ALL treatments for ME/CFS: it often takes a lot of trial and error to find exactly what works - try, try again! Hope the changes and a new trial of Florinef work as well for you guys as it did for my sons!!
No, never any nausea from LDn and olive leaf - we take both daily (well, every other day now for LDN).
Mycoplasma is one of those infections that is very common in the general population and you will find in many people's blood. It is also difficult to treat. I am concerned about all the antibiotics, which can cause their own problems when used long-term. Is she on strong probiotics? Abx are sometimes necessary, but you have to watch out for chronic yeast overgrowth and other issues.The yeast overgrowth alone can cause symptoms to worsen considerably! Here's more info:
http://livewithcfs.blogspot.com/2014/12/treating-yeast-overgrowthcandida.html
Since you mentioned both nausea and mycoplasma, that brings Lyme disease to mind! Nausea is a very common symptom, and mycoplasma is a common co-infection.
More info on tick infections and why everyone with these illnesses should rule them out - the urgency is that these infections can cause permanent neurological damage when left untreated, so you want to find out immediately if there are any tick infections behind the scenes.
http://livewithcfs.blogspot.com/2014/06/why-everyone-with-mecfs-or-fm-should-be.html
It's worthwhile looking into - we missed 3 tick infections in my oldest son for over 3 years!! Better to get it checked it out early and get a full evaluation from a Lyme specialist (link in that post to find one near you).
Sue
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