Everything still sucks - 2 years of long COVID (part 1)
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- čas přidán 29. 06. 2024
- So it’s been two years and I’m still wiped out by long COVID. I split this video into two parts, so watch the second one to hear all about my money troubles and how you can help me 🧡 • How my life has fallen...
Chapters
0:00 Introduction
Symptoms
1:34 Fatigue
2:22 ME/CFS
3:15 Mobility aids
Walking sticks
www.stickandcaneshop.co.uk/ma...
www.stickandcaneshop.co.uk/sp...
Electric scooter
windgoo.uk/products/windgoo-b...
the price has increased since I bought mine, sorry!
6:21 Fatigue episodes
8:26 Fatigue storytime
11:18 Vision issues
12:18 Driving
13:12 Reading
Medical interventions
14:28 Long COVID clinic
18:20 Cardiology
18:47 Neurology
19:12 Rash storytime
21:06 Neurology prognosis
22:44 Neuropsychological assessment
25:30 Mental health support
Personal interventions
29:41 Personal interventions
30:10 Fasting
32:45 Auto-immune protocol diet
35:16 Nattokinase
35:57 Cold water swimming
37:30 Nicotine patches
linktr.ee/thenicotinetest
42:04 Hyperbaric oxygen
Entitlements
43:36 Personal Independence Payments
45:29 Blue badge
47:46 Access card
www.accesscard.online/
49:37 Go watch part 2
• How my life has fallen...
🏡 chareads.com/
📚 / charlotte-dann
🌟 / charlotte_dann
It's been 5 weeks since I recorded this video (editing fatigue is REAL) but .... I think the nicotine is working. Since my first round of nicotine I've had a lot more energy - not cognitive energy, but I can do physical things like cooking and socialising without any post-exertional malaise. It is very exciting, this is the first bit of hope I've had in a long long time. I'll record a video about it once it's stabilised enough for me to know the effects.
I had to split this video into two parts because it was getting very long. The second part is mostly about my work situation (incl. a claim for income protection insurance) and my housing situation (where a builder stole my life savings). I'm in a very precarious financial situation at the moment - we don't have enough money to finish the renovations on our new house, and we're stuck paying for rent and mortgage until we do (which we also can't afford). If you are in a position to donate some money I'd be very grateful. You can become a member of my channel or donate directly at www.paypal.com/donate/?hosted_button_id=JE97VYH6Z2J3E (yes my PayPal name is Pour Être Belle Themes, long story).
So many people have asked for an update with my LC recovery and I'm sorry it's taken so long and isn't incredibly hopeful, but I'm sure brighter times are on the horizon. Stay safe x
I find it very worrying for the long covid, and vaccine injured patients, that nobody is informing them of the role that breathing air has on inflammation.
Everyone seems to be being told "your problem is inflammation", but nobody is advising them to consider looking into what it is they are breathing. Eat this anti inflammatory food, don't eat that inflammatory food, avoid psychological stress, etc etc. Even hyperbaric chambers showing benefits, which is just breathing clean air for a few hours a week. Do you think they pump the air from the city centre into a room at a higher pressure, and "add a bit of oxygen"?
We all breathe air that causes the inflammatory process to go into overdrive, and we all, normally, have brakes that stop the inflammatory process from going into overdrive. Your brakes don't work at the moment, because coronavirus, or the vaccine wore them out, just like all the others who are suffering from inflammation.
There are hundreds of studies explaining the mechanism by which the air we breathe causes all the problems you are experiencing. Your own experiences indicate it is playing a role. The question isn't, is the air you breathe playing a role, because the answer to that is yes, undoubtedly. The questions are, to what extent is it playing a role, what can you do to reduce it, and what will you gain by reducing it? These questions can only be answered at an individual level, because nobody is breathing exactly the same air and we all have different tolerances to the composition, and chemical instability of the air.
The worst place for most of us, is in our car, unless equipped with very effective air purifying filters and knowledge of best practices to limit exposure.
You say you live on a hill. I don't know which hill you live on, if for example you live on the hill of the race course, in certain meteorological conditions, you will be breathing, all day, the air pollution from the city that cannot escape because of the geological features of the area. You will be breathing levels of air pollution that have been known for decades to cause the symptoms you are experiencing "because of covid".
Covid has caused your body to lose control of the inflammatory process, and you need to help it retake control, by limiting your exposure to air with a high OP (oxidative potential).
Any update on the nicotine patch?
Thank you so much for this video. I found myself nodding all the time and it feels so nice to hear someone talk about these strange symptoms that so few people seem to understand - and you do it sooo good. And I admire your positivity and strength. Thanks again and best wishes from Germany. 😘❤️❤️❤️
I relate to what you said about people choosing not to believe / failing to see how debilitating chronic fatigue is. It’s horrible.
Thank you! Here too...almost 2 yrs and still..so sorry that you're dealing with such...still...its hideous. In some ways it sounds like you are doing much more than i could fathom still..with the 'business' around social things...wish you continued gains with it and to get well
I feel you. Most of my symptoms have gotten better, but the fatigue has not faltered at all.
Thanks for sharing. I just find it really fascinating. I admire your perseverance in finding your way through life in your recovery from LC. Hope you do get back to reading and your bookshelves come alive again. Gonna go watch part 2.
Hey darling, I'm only like 14 mins in but have to say, our symptoms are SO INCREDIBLY SIMILAR it's crazy. I just turned 28 and have had LC since 2020 so almost 4 years. I want to give you some hope. As of the start of December, I am almost LC free. I still get PEM, but my threshold for crashes are crazy crazy different. I also had a cane to walk around on (mostly laid down like yourself) and then on Friday last I went on a 2 hour hike. Never thought it would have been possible again. Also I just finished READING a book a week ago. Same cognitive issues as you.
If you wanna chat, please reach out. LC is so horrible. I'm so hoping you improve like I did since our symptoms were so similar! Be kind to yourself x
Oh my gosh congrats on your recovery!! Did you improve slowly or did you suddenly see improvements? Did anything you try help? The idea of going on a long walk has felt forbidden to me for so long, but since I started using nicotine patches I'm daring to dream it'll be possible some day ✨
@@Chareads i was improving slowly and steadily every year, although it's SO SLOW especially at this age. Totally relate to looking at your bookshelf and seeing a graveyard, and also being in flight or fight 24/7 but wanting to just relax 😅 I remember November was really tough symptom wise and so December coincided with 1) going off Low Dose Naltroxone (helped massively with being able to just be able to have conversations for longer than 10 mins without a crash). I was on it for 2 years and terrified to go off it in case my cognitive functions declined again, but I think it was actually hindering me. I was on 4.5ml,if you haven't tried it I would absolutely suggest trying it, but only for like a year or so. And 2) I had to quit my job. I think the lack of stress around having to turn in Drs notes and feeling so guilty and ashamed for *still* being sick was taking up so much more mental space than I thought. So I've been off work since Jan 2021 but officially unemployed since Dec 23, and I am now hoping to get back into some form of employment by summer which is nuts!
I never tried the nicotine patches cause I've lowkey been smoking on and off while having LC so I just assumed it wouldnt have an effect. So glad it's helping you! A lovely writer I know was wheelchair bound for 2 years with LC and can now cane walk with their help ❤️
Sorry to hear you're not doing well. I'm going on 4 months of LC. I was couch bound for the first 2 months. Been getting progressively better every month. Now I just have a permanent headache, PEM, and occasionally fatigue. Hoping I'm one of the full recovery cases.
I have both MS and postCovid (2 years with postCovid and I hate it). MS fatigue is seriously disabling and overwhelming, but post-Covid fatigue is actually worse. Hopeless desperation, apathy and brain fog. I'm longing to be a bit normally ill with multiple sclerosis again.
4yrs and counting for me, and we're talking pre vacinne and post ICU COVID19 hospitalisation.
I was just thinking about your LC journey videos the other day! I must be a little psychic (just kidding). I'm really sorry to hear that your symptoms are ongoing, and sending you well wishes 💜💜 As an aside, I feel you on the PIP assessment debacle... I'm autistic with ADHD and my PIP assessment was a shambles. The assessors were incredibly inexperienced with neurodiversity, and despite the fact that I made not a shred of eye contact (plus my anxiety was awful that day) and thoroughly explaining how much my mum and partner support me, my claim was rejected. It's a terrible system. I've been meaning to appeal myself. Good luck :)
Dr schubiner tms say s fatigue is brain to.i had severe vision problems 2006 2008 but now back to 20/20 vision me moved onto another symptom
Hello Charlotte! I just watched your two videos. I used to enjoy your bootktube content and now I’m finding out of your current state. I’m so sorry with all what you have been through. It’s really a terrible situation, with Al, of your symptoms, the insurance decision and the robbery of your savings. I hope you really get to see better days.
I am myself a physician (ophthalmologist, so nothing I can say about your illness cause I don’t manage too many information). But a little advice that I would probably do if I was in your situation, would be taking the magnetos off and doing a bran MRI. I don’t know if it helps, but I have read stuff in the body that’s not organic, creating trouble, for example silicone breast implants generating more risk of leukemia.
I hope this isn’t disrespectful and don’t want to step over your current medical doctors, but it’s something I thought through watching your videos.
Keep strong!
Have you any information on tibia puns though I've had CFS prior to getting my pin now I have fybromyalgia symptoms
I will never complain about my long haul symptoms again.
Hang in there. I do research on Long COVID so please feel free to ask me any questions about treatment or LC.
Do tripple anticlot medication help, idea, support fibrinolysis. Do you know anything about spinal fluid test from LC patients, worth doing?
Ive done hybaric it help fatigue but not pain i did 66 sessions
Duration per session? Pressure? Pure oxygen?
@@TOPTICKTRADER it was at a ms Therapy centre mostly the least one as it was harder to get on deeper on think it was 26 duration 1 HR
Do you have hypomobility the genes for it more often is this i have cfs decdes fybromyalgia my worst symptom
In addition to nicotine there is a supplement called Parasym Plus which may help you. Also, people seem to be recovering three-plus years out from initial infection. You wouldn't know this from visiting forums but there are a couple pre-prints out there that studied this. Another random thing, once you are able (with the passage of time or maybe the help of supplements) it appears that so-called zone 2 exercise (60 to 70% of max heart rate) appears to help because of its effect on mitochondria. Obviously you may not be ready for this yet but eventually....
Antivirals, like valtrex, are also a potential treatment option, though they can be a bit hit- and-miss for ME/CFS.
Did you have SPD growing up?
What are your Vitamin D3 blood levels? If they aren't 100 ng/ml you may be low. Low Vitamin D3 blood level = low immune system function. (possibility of cytokine storm activity - rogue antibody activity causing disease.) Get your Vitamin D3 level up and you will probably feel better. How are your other Vitamin and mineral levels? A, B complex, B12, C, magnesium, Omega-3, folate, selenium, potassium, steroid levels??? You may be malnourished. Ask your doctor.
Hey, you actually made talking about long covid interesting!
On the other hand you have as many books as Tai Lopez! 😄
have you tried exercise? - boosts energy, mood, cardio vascular system. I wonder if anti-depression techniques help?
Exercise is counterproductive for ME. Although helpful for many chronic conditions, for ME/CFS it leads to post-exertional malaise and can permanently lower your baseline. me-pedia.org/wiki/Exercise www.actionforme.org.uk/get-information/managing-your-symptoms/graded-exercise-therapy/
Have you considered seeking help from a mental health professional?
I don’t want it to come across as throwing shade at you at all. You seem like an intelligent, competent, and driven person. I just think the energy your putting into trying to solve your “fatigue” issues can be redirected to something more productive. As an example, I don’t think someone from a developing country has the privilege to even engage in trying to figure out their fatigue issues. They simply just go to work and do what needs to get done. Hoping the best for you. Good luck.
I have a private therapist, anti-depressants and anti-anxiety meds as described from 25:30.
ME/CFS is a serious physical health condition. Saying that someone from a 'developing country' would 'simply just go to work and do what needs to get done' would be impossible if that person had moderate or severe ME. It's not the same as tiredness, it's not laziness or a lack of motivation. If I was feeling bad and forced myself to stand up I would pass out in minutes. If I went on a walk I would have to stay in bed for days. There is no choice involved.
@@Chareads I understand. Excuse my ignorance to the subject.
If only it was as simple as just getting on with your day and fatigue it’s not just fatigue as in your knackered I don’t understand why people can’t understand that, I don’t have cfs but I have autoimmune disease so the fatigue I totally understand and the only way I can discribe it is is walking in constant quick sand and drowning in every step so imagine trying to just quick sand your day to work it’s just not happening! X
I was born with low energy as a baby I slept 23 hrs a day at 17 I broke my tailbone triigred CFS pelvic pain 27 years later muscle pain is worst symptom on ldn then fatigue I've also had pots lost my mum to severe ms found out we both have heds autism adhd
I feel you. Most of my symptoms have gotten better, but the fatigue has not faltered at all.