Chronic Illness Vlog 5-13-24: Bit of a bump but still doing well!
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- Опубліковано 14 тра 2024
- How was YOUR week?
Please note that I am NOT a medical professional and am not offering medical advice. I am sharing my own experiences and what I've learned.
These brief video clips from last week show an honest view of my life with chronic illness. I'm still generally feeling very good, thanks to a wide range of treatments. I had a little set-back last week (spoiler: yeast again) but was improved by the end of the week #chronicillness #MECFS #Lyme #longCOVID #candida #chronicillnesslife
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On my blog - tips for living with chronic illness, plus effective treatments and new research for ME/CFS, long-COVID, and Lyme: livewithcfs.blogspot.com
MENTIONED IN THIS VIDEO:
Effective Treatments for ME/CFS: livewithcfs.blogspot.com/p/mec...
Chronic Illness Tracking: • Chronic Illness: Track...
Booktopia Vlog: • Booktopia 2024 Vlog #b...
Diagnosing and Treating Thyroid Dysfunction: livewithcfs.blogspot.com/2023...
Treating Yeast Overgrowth/Candida (newly updated): livewithcfs.blogspot.com/2014/...
Vitamin B12: Most Effective Types & Forms: livewithcfs.blogspot.com/2014/...
Increasing Glutathione: livewithcfs.blogspot.com/2017/...
Carnivore Diet Video:
• My Experience with Car...
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Your such a hero to me. Your always upbeat and happy. Love to hear your favorite books as a reader myself. I pray for you and your family. Rest when you can. Love your video's...😊
Thank you for such a kind note, Carla - I really appreciate that!
I really admire how well you manage your chronic illness! I can see why you have to (those crashes have to be horrible), but I know a lot of people who deal with chronic illness and just try to pretend like it doesn't exist.
Oh, I get it with family. I would *love* to have an Air BnB when we visit family, but my husband always wants to stay with them. He doesn't quite understand that I sometimes need my recharge time!
Thanks, Melinda! I guess I;m a slow learner because it's taken me 22 years to fully learn to listen to my body and respect my limits (and I still sometimes push myself too hard!), but life is definitely better when I can stick to my routines (my afternoon nap is sacred). And ha ha - love your comment about wishing YOU could stay in an AirBnB when visiting family! Yeah, my family is a LOT - wild partiers. And now that the "kids" are all grown, it's much worse (or better, depending on your perspective). My mom at first was like "Oh, you could stay here," but then I came in after my nap at my Airbnb, ans her husband had the music cranked up so loud, the floor was shaking - lol I hugged her and said, "Now do you understand why I can't stay here?" and we both laughed.
Sorry you felt left out at times during your trip, that’s always hard, especially when there are extra friends and family over. My family is having a graduation party for my brother this next month and it’s going to be difficult for me. I didn’t get a graduation party or any celebration from graduating because I was too ill. If I ever improve enough, my family says we are going to have a ginormous party to celebrate.😊
It’s still hard feeling left out, or even when you can participate but all you can think about is how you want to lay down in a dark room and sleep.
I’ve missed so many birthday parties and potlucks/get togethers at my own home and have had to stay in the bedroom alone while I can hear everyone laughing and having fun together.
You definitely are allowed to feel sad and upset about your circumstances, it’s only natural.
I just started the exact same glutathione nasal spray this week. We’ll see how it goes.
I hope you start feeling back to normal soon. Praying for you.✝️
Thank you so much for your kindness and compassion. Yes, feeling left out can sometimes still bother me, even after 22 years! So very sorry that you have also missed out on so much. I hope you get that ginomous party one day!! Glad to hear you re starting glutathione nasal spray. Even if you don't immediately feel better, stick with it - it really helps with the immune system. After my son and I started it, we both went from getting bronchitis 4-5 times a year to rarely getting it now (maybe once every 2 years or so). My son is doing so well now (from a variety of treatments) that he just left on a month-long road trip, and when he comes home, he starts a new full-time job! That's with ME/CFS for 20 years plus 3 tick infections :)
Really enjoyed this vlog Sue! A lot of what you talk about rings true: esp regarding emotional fragility when one is feeling exhausted etc...such a good idea to have the air b&b to retreat to!! I've just started my summer break, so I'm still tired from the very busy semester. I need to let my body just rest. I'm doing better due to a new medication but I still have issues with tiredness sometimes.
Thanks, Cathie! Wow, working as a professor must be exhausting! Glad you have the summer to rest and relax ... and read! And so glad a new medication is helping! If you don't mind, please remind me what chronic illness/issues you are dealing with? I recall chatting about it before, but I don't remember the specifics. Enjoy your laid-back summer!
@@SueJacksonDE in 2014 I was diagnosed with rheumatoid artritis, but by now my symptoms have morphed into fibromyalgia and chronic joint pain. I also have a lot of osteoarthritis and on the mental side, generalized anxiety. I can still do my job, and do love the health insurance, but I also need time to rest. (stress exacerbates pain, and anxiety). Your vlogs are good for reminding me about self care!!
@@thegrimmreader3649 Wow, sorry to hear you've been dealing with all that, though it is wonderful that you are still able to work (and, yes, retain health insurance!). I just posted the kick-off video for my annual Big Book Summer Challenge (now in its 12th year), if you want some extra fun in your relaxing summer reading!
I'm not well informed, but I have heard that some sugar substitutes can actually kick you out of ketosis. Is that maybe what happened
Like maybe the ketosis itself is keeping the yeast in check somehow?
@@GM-pn2bi I don't know. Definitely most sugar alcohols can feed yeast. Xylitol and erythritol are the exceptions - they actually fight yeast. And the research says stevia is OK, too. I think it might have been the allulose in the one sugar substitute I used in the dessert (Swerve brand), which seems to have conflicting info re: yeast. For me, the issue isn't ketosis so much as just starving the yeast and making sure I eat nothing that can feed them - tough to do but it's definitely helping! Ketosis isn't my goal or even necessarily helpful for me - it is simply the outcome for me of eating only the foods that won't feed yeast. Something to consider, though - thanks for the input! I appreciate you taking the time to comment.
How did you find out that you jad yeast overgrowth? Did you take a blood test?
Unfortunately, there are no accurate tests for yeast/candida overgrowth.It's more based on symptoms - thrush on your tongue is an obvious sign. And most people with ME/CFS and long-COVID do have yeast overgrowth or are prone to it because of the specific kind of immune dysfunction we have. Take a look at my notes above (below the video, where the description starts, click on " ... more"). There is a link there to my blog post about yeast overgrowth, which includes LOTS of information and tips on how to tell if you have it and how to treat it effectively. I just recently updated that post. Let me know if you have any questions!
What is MECFS? I know the last 3 letters mean Chronic Fatigue Syndrome. I have 4 auto-immune illnesses and Fibromyalgia. I have had chronic pain for 27 yrs, but the last 7 yrs. have been brutal due to botched surgeries. Where do you live? Somewhere in New England? I was raised in Lexington, Mass. and lived in N.H. after being married. Blessings for your health.
Thanks, Eileen. ME stands for myalgic encephalomyelitis, and is the formal name for this disease that the whole world used, until the CDC came along in the 80's and renamed it CFS (which of course is a horrible name that trivializes the disease). ME/CFS is basically an immune disorder - so with fibro and all those autoimmune conditions dx'ed, it's quite likely you also have ME/CFS. It's primary defining characteristic is an intolerance to exercise, where even mild exertion results in a "crash" or sudden worsening of all symptoms, often feeling flu-like, anywhere from 1 hour to 48 hours after the exertion. It's not always obvious unless you know what to look for. So track your activity level and how you feel for awhile. If you feel pretty good one day, take a walk or go to the store or do something else that is mildly exerting, then see how you feel in the next day or two. You may have already seen this pattern without realizing what it was. If you have exercise intolerance, then you almost certainly have ME/CFS. The good news is that once you confirm that ME/CFS is your diagnosis, then there are LOTS of different treatments that can help you feel better. Many of these treatments help with fibro, too. Have you ever been evaluated by a Lyme specialist for tick infections? They are a common culprit in chronic pain, often go hand-in-hand with fibro and ME/CFS, and often go undiagnosed because mnost doctors only test for Lyme (and standard Lyme screening tests only pick it up about 60% of the time).
Oh, and no, I don't live in New England. I grew up in western NY state, and we are now down in Delaware in the mid-Atlantic :)
Sorry, but so much shaking. Can you maybe put the camera on a surface.
Sorry that bothered you. These vlogs are a quick peek into my life, so I just grab my phone and take video while I'm doing various things during the week - no prep and on-the-fly. You might prefer some of my informative videos, where it's more structured and I film using a tripod (any that are not labeled vlog). There are links to some of them in the notes below this video.