My last well day was March 8th, 2020, so closing in on four years soon. Accepting pacing has been so challenging, because there are so many demands. I learned I was crashing and flaring, over and over, it was depressing, not to mention felt miserable and pain all the time. Minimizing how much I did in a day was extremely helpful and absolutely necessary. So many days, I did nothing, couldn’t do anything at all. The best help for me, has been Naltrexone, it helped with the full inflammation and brain fog. Slowly began to do more, like a walk, or housework, eased depression. However, if I do too much or have something stressful come along, I still crash. Wishing everyone suffering through long Covid, finds the patience and wherewithal, to make it to the finish line. Love and healing to each one of you!
Thank you for sharing your story. Figuring out pacing can be really tough and frustrating. I’m glad the naltrexone has brought you some improvements. Fingers crossed they continue 🤞☺️
@@livingwithmecfs And thank YOU for your kindness and understanding. It's really different for everyone, some successes and some not so successful. It's all so isolating and wears people down. I am so happy to have comforting words on here, even if they are not instant fixes, or even slow ones, but the stories shared, is comforting that we are not all alone in this.
You take low dose correct? Your story sounds amazingly similar to mine. Brain fog (generalized), then sometimes full on brain flare ups (possibly from long days/mental stress). Short naps in a dark room help. Has anyone ever had these symptoms and got back to normal or is this the rest of my life?
@@naptownbucks Yes, low dose, for me @ 3 mg, higher caused fainting. It just might be a life style, so to speak, unless they find a cure or distinct treatment. So many different approaches have helped people, I tried so many of them. I think for now, seems like we have to be more patient and keep trying different things to find what our body needs. I find preventing flare ups or crashes is the best approach to maintain the small gains. Although, I have found continued attacks on my body is occurring despite my disciplined life style. Constant vision changes, organs suddenly full of cysts, headaches and fatigue continue. I avoid crowds, too much going around and catching anything, especially the still circulating Covid strains is threatening. I hope you find help or on your own, find alternatives to help. Wishing you much luck!
I will be 36 months in 10 days. I am far from recovered. i spend 80% of my days in bed. Its been absolutely hell. Seeing all these recovery stories is great but it also makes me feel like im at 3 years n still so sick and everyone that i have seen have recovered in 2 years or less. And even before the complete recovery they got massively better. Its so hard not to compare yourself with others when this sickness is so horrible. But i hope i find my cure.. the last 3 years have been truly hell. Also it would be extremely helpful if you shared the breathing technique that you used..
Here is a recording of a free webinar Jackie did where she shared some breathing exercises ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-mw0ShDBqCsc.htmlsi=SKJCWhq_pdpsvXg5
The first step towards recovery is don’t read comments like this. People can be so selfish by spreading their doom. It doesn’t help them or anyone else. I’m sorry you’re struggling but think of others. My story could ruin day I promise but I know that so I keep it to myself and focus on my recovery.
You are young, you will recover that is your big advantage. Do not do anything that compromises your energy . Stay away from Exercises, Phone, computer just rest, rest and rest. Do not stress at all. Meditate, Prayer, have faith, I m much older and it is harder for me two years with very severe long covid. Wishing you full recovery.❤🙏
Thanks for this Jackie. I'm 39 months in too and still suffering mainly with fatigue, aches, weakness, brain fog amongst other issues. Not worked since Oct 21. I fell off the recovery wagon a few months back due to unforeseen demands on me resulting in a consuming depression. But i am armed and ready for a new regime soon encompassing all you have mentioned. I have had good results using these methods and hope it will be my path to full recovery too. I shall be blooming into Spring, that's my hope anyway 😁 Mike
I’m over 2 years now Brain fog Fatigue Chest pains Crazy anxiety Swimming has helped And HBOT But still relapse every month 😢 The hardest thing is, I don’t know anybody else who has got it even at my doctors They think I’m crazy 😢 I have recovered three times, but just keeps coming back 😢
Oh man, it must be tough to keep relapsing like that. Is there any obvious trigger, like over working or getting another infection? You are definitely not crazy, some doctors just aren’t that knowledgeable! There are assorted long Covid support groups on Facebook which maybe a way for you to connect with others going through the same thing
Doctors know all... They know people are injured but 9 cases of long covid out of 10 comes from jabs so they have to hide and lie... My life is ruined after 2nd dose of pfizer, same syntoms of long covid. No diagnosis or help from doctors... They sent us to die signing for it. I hope they will pay for what they ve done to humanity
That’s what I’m dealing with. I had Covid for the second time a month a ago and every weekend I have extreme fatigue, sore throat, aches. I have been fighting to get through the work days. I recently had blood work done and I tested positive for a recent epsilon Barr infection. I quit going to the doctor about this as they have nothing for this and I can’t afford to keep going. I’m 64 and have been dealing with this for years. 😢
@@Dreamer-by4nk I am on the Kings College Hospital long Covid study. They are saying it is a software thing, but I believe the virus lives in my body Just like the shingles virus does I have made improvements I’m so sorry to hear you caught Covid again. Did it make your long Covid worse?
Thank you for sharing your experience. I remember one of your video, about Vedicinal 9 and you also spoke about nattokinasse how long did you take those supplements? . Thank you again.
I'm so happy to hear others are recovering , I relate with everything Jackie, although my major problem was relapses with fatigue and illness after pushing myself, anyone know a treatment for that? I need to be recovered, almost there, it's been so long since I've worked, I'm nervous.
Unfortunately there is no easy fix for relapses. It is a case of learning to pace and limit your exertion, the more you push beyond your limits the more you will relapse. That’s not to say it is impossible to increase activity level, but you have to do it at a rate your body can handle. That rate is always slower than we would like! I completely understand wanting to be fully recovered and able to work. Fingers crossed you will get there, it may just take baby steps
I understand how overwhelming that can be. Trying to juggle responsibilities while taking care of kids is tough, but throw long Covid in the mix and it can be brutal. It's okay if pacing feels difficult right now-you're doing the best you can. Try to take care of yourself, even in small ways when possible. Sending you strength!
interesting, i see violoncello behind, do you play? how does that go? that is the main thing for me, unable to play my instruments close to 3 years now.
Yes - that was what I did before I got sick. I barely played for years - the cello was big and required more energy, and there were a whole load of expectations tied up in it too. I actually started playing the violin instead - smaller, less energy required, I was able to play for short times & no expectations because I expected to be rubbish! I think it was good for my brain actually.
@@winniecash1654 oh that sounds tough. Have you tried humming instead of singing? I know it's not quite the same, but humming is really great for the Vagus nerve & might feel a little bit like singing?
@longcovidpodcast yes. I know I should at least hum. It's time to break out my guitar and sing, even if it's just for 10 minutes a day. Thanks for the reminder.
Hello, after 4 Covids, the last one in 11/2022, I have a daily problem with dizziness and heart palpitations and arrhythmia. all examinations are fine. but I struggle with it every day. what helped you? well thank you
Have you been checked for BPPD? It means dislocated inner ear crystals as a result of Covid. I was very very dizzy. A specialized vestibulary fysical therapist helped me hugely
''Didn't see herself as at risk for (sic) covid....'' Of course she didn't - she'd possibly been given something we're told is ''safe and effective'' in preventing it. Why should she be at risk for(sic) covid?
Many of us got Covid long before jabs were created. February 2020 for me and long Covid since. I never want to get that sick again so I got vaccinated and boosted and have had no problems with them, no side effects and no exacerbation to Long Covid. I’ve done so many things and each year I’m a little better, thankfully. Good luck guys. Pace your activities because too much activity/exercise can definitely set us back. ❤️❤️❤️🙏🙏🙏
November will be 3 yrs. Since severe covid 21 days in hospitals till on o2 still can't hardly walk now have thyroid cancer can't operate cause o2 now on lung transplant list from covid
Jackie is a breath practitioner! Breathing helped her recovery so much she trained to be a practitioner and now runs online courses specifically for people with Long Covid. There are links in the description so you can contact her directly.
I worked in education, so probably there, but I don't see it as being relevant really - it happened, so no point in rehashing. It took me 3 years 3 months to be recovered. And then a bit of a weird transition period after that of readjusting to what life is like now!
@@longcovidpodcast I have been very blessed to never get Covid because I don’t be exposed by lots of people daily and I stay away from crowded and sick people especially during the Flu season 😷
Yes I do! I'm now working as a breathing instructor. I use yoga nidra & breathing regularly - not as much as I did, but when I feel like life is getting busy and I'm stuck in front of a screen too much, or if I feel myself getting anxious. It's a useful tool for life. And the cold water is something I still do several times a week - I've built it into my new adventures!
I was never tested. I suspect I did. I certainly had Dysautonomia. Whether i technically reached the threshold for PoTS wasn't really important (although if I'd had access to Ivabradine or similar early on that might have been useful)
I talk about this in much more detail on the podcast, but main symptoms were fatigue, heart palpitations, dizziness sometimes, breathing issues, PEM, general dysautonomia. Less disturbing symptoms the covid toes, intermittent nausea, motion sensitivity... And then a lot of mental health stuff too - trauma, anxiety. There were lots more but I think they were the main ones.
Wow. I’ve seen almost all of Raelan Agles recovery stories, and a lot of other ones (love them all), but I have yet to find that story that completely connected with mine. I wasn’t expecting Jackie’s story to be the one (almost scrolled past it), but the second she talked about pacing conversations, it kind of made my heart fill up with Joy because my I experience the exact same. unfortunately, I am bedridden, but I still have hope for recovery.
@@livingwithmecfs aw haha i appreciate it! my illness hit me really hard in September 2022 & and I haven’t been able to sing since due to the cognitive fatigue /: I miss it so much!
@@connorprovan2331 aww that sucks, I’m sure you will be able to do it again in due course. Maybe you could give me some singing lessons because my singing is BAD!!! 🤣🤣
