Chronic Illness Vlog 10-16-23: Crash! A Horizontal Week.

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How was YOUR week?
These brief video clips from last week show an honest view of my life with chronic illness with its ups and downs! I started out a bit too optimistic and thought I was over my crash, but I ended up spending most of the week horizontal, on the couch. #chronicillness #MECFS #Lyme #longCOVID
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My book - Finding a New Normal: Living Your Best Life with Chronic Illness - is available everywhere, in print and e-book: livewithcfs.blogspot.com/p/my...
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
ME/CFS and Infectious Triggers (how to prevent and treat worsening during fall/winter): livewithcfs.blogspot.com/2020...
Treating Immune Dysfunction
This blog post includes information both on improving immune function and on treating underlying infections: livewithcfs.blogspot.com/2017/...
Inosine: livewithcfs.blogspot.com/2014/...
Effective Treatments for Yeast Overgrowth/Candida: livewithcfs.blogspot.com/2014/...
Diagnosing & Treating Orthostatic Intolerance (OI) blog post: livewithcfs.blogspot.com/2010/...
OI Video: • Orthostatic Intoleranc...
Chronic Illness Tracking: How I Feel, Symptoms, and Treatments: • Chronic Illness: Track...
Vitamin B12 - what it does, why we need it, plus types and forms that work best: livewithcfs.blogspot.com/2014/...
Increasing Glutathione in ME/CFS and Long-COVID: livewithcfs.blogspot.com/2017/...
Dr. Davis' very interesting 10-minute video on "Can ME/CFS Be Cured?" plus another article on treatments: livewithcfs.blogspot.com/2023...
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My blog: livewithcfs.blogspot.com (sign up for e-mail list)
Twitter: / livewithmecfs
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13 ноя 2023

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Комментарии : 41

@Tealover645 9 месяцев назад

Hi Sue, I feel your frustration. I too have been badly crashed for the last 5 days or so. I had a hospital appointment last week, which involved breathing tests for my asthma, which is probably the cause. It’s so frustrating trying to work out what was so different from other times that I have been able to get out. I’m no longer able to drive, get pushed in my wheelchair by my husband and do everything I can think of to help, but crashes still happen. I had a visit from an occupational therapist a couple of days ago (the first professional I’ve had any contact with in over a year) and she pointed out that some of the things that I do when I am “resting” may not actually be restful enough. Even when I’m not crashed I probably spend about 80-90% of my time lying on the sofa. When you’re feeling better I would really appreciate a video on resting effectively. Sending good wishes from England .

@SueJacksonDE 9 месяцев назад

So sorry to hear you are also suffering a mystery crash! The constant stress of trying to figure it out is exhausting in itself. A video on rest is a great idea - I could even do that while not feeling well, as opposed to some other ideas I have that I just don't have the energy for. In the meantime, look for my video on How to Nap (in the chronic illness playlist) - it has some great tips for napping/rest/sleep that might be helpful!

@georgemaxwell4984 9 месяцев назад

Love your deck and the view. ❤ - Frances

@SueJacksonDE 9 месяцев назад

Thanks, Frances! I do, too :) It helps me so much on bad days (or any day) to spend time outdoors, and I love our peaceful view from the back - it's part of why we chose this house!

@lorrainedegenhardt6432 9 месяцев назад

It’s so frustrating to have to deal with Doctors and pharmacy’s, especially when you don’t feel well. I found your old video on tracking symptoms very useful and it really helps to connect the dots. I am very up and down. I still work as a teacher 3 days a week, by the end of the week I’m exhausted and can really relate to those body aches and feeling like I have the flu. I’m not sure how long I will be able to work but I do enjoy what I do. Saturday is my lying on the couch which also has recliners at both ends. I find your videos strangely reassuring as well as a source of useful information, so thank you. I hope things start to improve for you this week. PS I’m writing this comment lying down on my couch.

@SueJacksonDE 9 месяцев назад

Wow, I'm ery impressed that you are managing not only to work but to teach three days a week! That's wonderful that you can still manage something you love, but I understand the price you pay. I also understand your comment "strangely reassuring" - it just helps to know there are other out there who GET IT and who are experiencing similar things, doesn't it? Thanks for the kind words - and for taking the energy to comment when you are also horizontal!

@Tealover645 9 месяцев назад

I just watched the video you talked aboutand it gives me not only some hope, but also food for thought about the crashes

@SueJacksonDE 9 месяцев назад

Yes, right? I felt the same way! Even after 21+ years, I am still learning. One of my freelance jobs is writing up short summaries of new research projects for patients for Open Medicine Foundation, and wow, there is some really exciting research going on! Gives me hope.

@awebofstories 9 месяцев назад

Ugh! Pharmacy issues are the worst. I don't love my pharmacy, but they've made it so hard to change that I feel like I'm stuck with them. I'm sorry to hear that you've been feeling ill! Hopefully going off the sugar will help you feel more yourself. I don't blame you for being exhausted between having to deal with doctors/pharmacies/etc and feeling low!

@SueJacksonDE 9 месяцев назад

Thanks, Melinda! I actually love my local pharmacy - same pharmacist for about 25 years now and she knows me and greets me by name :) But insurance insists I use mail order for most Rxs. And the ones I was talking about come from a compounding pharmacy, which is a whole other ball of complications! ha ha I was on the phone again this morning with them and my doctor's office. Thanks for the kind words.

@jimsbooksreadingandstuff 9 месяцев назад

Hope you find out the cause of the crashes and that you can elimiate the toxin or whatever it was, so difficult to manage chronic illness. Hope you have fewer crashes in the future.

@SueJacksonDE 9 месяцев назад

Thanks, Jim! It's a constant guessing game with this disease. The immune system is still very much a mystery!

@jimsbooksreadingandstuff 9 месяцев назад

@@SueJacksonDE There are so many potential toxins in our environment.

@Truerealism747 3 месяца назад

@@jimsbooksreadingandstuffso true especially if we have autism we don't no how much EMF effecting us to

@georgemaxwell4984 9 месяцев назад

We have to be 60 for any senior discounts, 55 is much better.

@SueJacksonDE 9 месяцев назад

For our grocery store, it's 60, but Walgreen's originally based Senior Day on being an AARP member, which starts at 50 (I think they've since raise it to 55).

@Truerealism747 3 месяца назад

Do you jave sinus ussues uf your yeast is high in uk a gp never checks for yeast we only have natural supplements

@SueJacksonDE 3 месяца назад

Like many with ME/CFS, I have Mast Cell Activation Syndrome (MCAS) - basically allergies due to my activated immune system. So I have some mild sinus issues from that but treatments help. If you notice thrush in your mouth (see the notes below the video for link to my blog post on yeast overgrowth), you can point that out to your GP - any doctor will understand what that means.

@Truerealism747 3 месяца назад

@@SueJacksonDEI did but my Dr said it wasn't patchy didn't treat b12 helped it

@Truerealism747 3 месяца назад

@@SueJacksonDEI had severe sinus issues candida drs don't believe in it in nose though Saud it's bacteria had last lost cleaned in operation it's clean there now with vitamins

@Truerealism747 3 месяца назад

@@SueJacksonDEthey say mcas causes muscle pain?

@SueJacksonDE 3 месяца назад

@@Truerealism747 Sorry - that's just ignorant. If there is any thrush on your tongue with ME/CFS, it is likely throughout your GI system, and it's critical to treat it because it will cause the immune system to over-react (which is central to ME/CFS).

@Truerealism747 3 месяца назад

Ime unsure uf i have lyme as the tests arnt accurate what did you use i have heds autism ADHD fybromyalgia cfs so dont no what causes what.

@SueJacksonDE 3 месяца назад

It can be tricky to unravel the different diagnoses and to figure out which causes what symptoms. I've had Lyme disease since 2007 but have never had a positive test! Because of my immune disorder (ME/CFS), I just don't make the antibodies that the tests look for. If you have negative test results but suspect Lyme, the only surefire way to know if you have it is to try treating it. You would probably want to start with prescription antibiotics - doxycycline works best against Lyme. If you feel better the first few days and then suddenly get much worse (a Herx reaction), then it's most likely Lyme. But it's tricky because if you also have other tick infections (most ticks carry multiple infections), you want to get accurate diagnoses before you begin treatment. That's why the only way to figure this all out is to see a Lyme specialist. Because YT often tags links as s*p*a*m*, I will include a second comment below with a link for finding a Lyme specialist near you. Let me know if it doesn't show up.

@SueJacksonDE 3 месяца назад

Ok, here are resources for finding a Lyme specialist near you - please let me know if you have any questions. Here’s how to find one near you: igenex.com/tick-talk/how-to-find-doctors-who-can-help-with-your-tick-borne-disease

@Truerealism747 3 месяца назад

@@SueJacksonDE when I had antibiotics years ago made me very depressed I now no it's common in in autism.do you get rashes with Lyme though and inflammation in joints? And a vibrating feeling over spine I suppose it isn't in all cases though and I worry with antibiotics and candida.just like to no if I have it before but if tests arnt good enough very hard thankyou

@Truerealism747 3 месяца назад

@@SueJacksonDE thankyou are those physicians in UK? And can I get a test to UK if I was bitten it would be 25 years ago as I no I haven't had any ticks in me overnight etc but I did alot if haymaking as a child

@SueJacksonDE 3 месяца назад

@@Truerealism747 Many people do get rashes with Lyme (about 50%) but I didn't. And the rashes can look like anything - not necessarily the classic Lyme bullseye you hear about. You are right to worry about candida - almost everyone with ME/CFS had candida issues anyway because of our immune dysfunction, and antibiotics definitely make it worse. That's why my son and I now stick with herbal antibacterials, which are easier on the body. Plus we both treat yeast overgrowth/candida constantly with loads of probiotics, herbal antifungals, prescription antifungals, and diet.

@Truerealism747 3 месяца назад

Do you have lyme

@SueJacksonDE 3 месяца назад

Yes. My son and I both have ME/CFS, an immune disorder, and tick infections. Just Lyme for me (about 5 years after I got ME/CFS), but my son had Lyme, bartonella, and babesia. Because of the immune dysfunction, we can't fully get rid of the infections, but we control/manage them well with herbal treatments.

@Truerealism747 3 месяца назад

@@SueJacksonDEdo you have hypomobility how do you no what is the Lyme or cfs

@Truerealism747 3 месяца назад

26 years CFS but with ldn fatigue isn't worst it's upper body muscle pain daily but ime sure its mcas from.i now no I have autism heds

@SueJacksonDE 3 месяца назад

@@Truerealism747 No, no hypermobility for me, though my younger son is hypermobile. I've learned through experience what is Lyme and what is ME/CFS. I had ME/CFS for 5 years before I got Lyme, so I knew the new symptoms were Lyme - sudden, severe knee pain, swollen knees, mainly. Those went away with Lyme treatment. When I stopped Lyme treatment, joint pain came back (knees and hips), plus later, some early neurological symptoms. When I resumed Lyme treatments, that stuff cleared up again. So, trial and error.