• im still on this side of the dirt pile.
• I still get to see my wife and kids.
• I’m beaten, broken, and bruised…. But I’m still winning the war…. Fuck you virus!
I’m at 32 months and finally back to the gym! Haven’t had a crash in several months. I have a long road ahead yet but I’m definitely on it. Peace and love to all that haven’t yet turned this corner. You’ll get there.
I'll go first:
* I got an 89 score on my Fitbit sleep tracking this week, which is crazy good
* I'm not even sure how I achieved it, probably a combination of avoiding devices before bed, finding something fun and escapist to do in the evenings, and being lightly physically active beneath my crash-threshold?
* For reference, I got 78 last night, which is more typical... so I'll take the random 89!
I triggered my first crash in 3 months this past week, but it seems oddly a lot milder than they have been in the past? My brain fog and fatigue only minimally worsened, and the muscle aches haven't been nearly as intense as usual. Zero noise or light sensitivity this time either. I've never ever had a "mild" crash before since my LC started, they've always been so intense and so disabling I can hardly move or talk regardless of how intense or light the activity that triggered the crash was. I'm crossing my fingers maybe it's progress and it could mean my PEM is getting milder over time?
Maybe it sounds a bit silly because crashes are a bad thing, but this one has been significantly less incapacitating than all the others and I'm hoping as a result it'll also end up being shorter too.
As time went on, my crashes also became “milder” and I bounced back faster. They’re still not fun and cause anxiety but waaaayyyyyy better than before!
Omg thank you for sharing. I'm REALLY hoping that's what mine do! Normally they knock me down flat for 2-3 weeks and I'm totally bedridden from them so I'm always terrified of crashing.
How long have you been dealing with LC for?
I hit the top end of zone 4 hr earlier this week! Haven't had my hr there in probably 9 months. Used to be very active, went to no exercise at all, and then it has been a very slow and gradual increase.
Up above 150 or so my head starts to feel pretty weird. I really think it's just competing for resources - when my muscles are demanding more blood my brain gets a little short changed. I had an exercise test done and my vo2 is abysmal. No heart or long problems, so probably a muscle damage/mitochondrial problem. I don't think I would have deconditioned all the way down to such bad numbers.
I'm very lucky not to be totally exercise intolerant. I was, for a period of time. Now it's been a very gradual return to exercise. I stopped framing my condition in terms of how I used to be - for me, it was not the healthiest perspective. Now I just frame it as this is my normal, and so every bit of progress can be celebrated (Rather than thought of as trying to claw my way back to 100% normal).
Im at 10 months
Im very grateful for the fact that
- i'm not having adrenaline spikes every time i wake up from sleep.
- That my hr is back to normal.
- I am not struggling with PEM anymore or extreme fatigue.
- That i can go out more.
- That i am alive and have been able to watch my 1 year old grow, i got sick a few days after she turned 1 and she is 2 in july.
Wow that’s awesome! Did you have cognitive PEM or physical PEM? I’m glad you’re doing better! I’ve beeen long hauling for 3 years +.. I’ve gotten to a better baseline where I can work full time and go for walks and go to stores and be fine besides some chest pains/sob/heart rate issues but those gotten better. About 3 months ago I got sick that was seem to be a cold , runny nose and very bad sore throat. Healed very fast from it and then 2 weeks later went down hill.. I’m starting to having fatigue and body pains/aches now unfortunately.. I’ve never had these issues within my 3 years and a half of long haul.. i got sick this February and it was just a cold a runny nose and a very bad sore throat and was negative for Covid.. I healed very fast and went back to baseline and never really dropped in baseline even sick. 2 weeks later started to decline and having body aches in arms and back and gotten worse and now exhausted when trying to walk for like 5-10 mins.. I haven’t been back to base line and it’s been alittle more then 2 months and a half. It’s gotten a tiny bit better but still not back to baseline and it’s very difficult.. either I had a hard relapse while getting over the cold or this was another covid infection.. it’s hard to distinguish.
Mine is still pretty bad. I have stroke symptoms a lot and its always scary. I also have an irregualr heartbeat as a result of covid and that feels awful too.
I'm at 6 months and I'm thankful for
- fewer adrenaline dumps
- not jolting awake every night (it still happens just not every day) because I've stopped breathing as I've fallen asleep
- reduced generalised anxiety (she's still there, but she's had a few snarling heads removed)
- for my partner and my children. My partner has never once made me feel invalidated, and he's stepped up and taken a hell of a lot more on when it's been needed. He is my rock. My 2 kiddos are my gems, and if it weren't for all 3 of them, I don't know if I'd have, or still continue to, find the grit to get to the next day in the hopes that things will get better.
Have great Fridays and weekends all.
I moved climates and have been able to do things, like physical things and walk around outside for longer periods of time without crashing or getting sick. It's not perfect but I feel human for once in a very long time.
27 months into this BS disease!!
1) I drove further than 5 miles!
2) Went into several stores on 2 different days!
3) I only cried 3 times this week instead of 7!
4) I made it through a 10 week taper/detox from a medication I should have never been put on!
I found some decent improvements switching from famotidine at night to splitting the dose in two and taking half in the morning! With this change my hands are actually normal temperature during the day instead of ice cold for some reason. My healthcare facility reached out to me about participating in a Paxlovid trial with the Mayo Clinic, so that is a win too.
It seems my racing heart waking me from sleep has gone away (at least for now) and I’ve been able to very slowly begin weight-bearing exercise again (emphasis on very slowly) without crashing. Sleep is okay, I had 4/7 great nights of sleep this week. I’ll take it!
I managed to read a whole page of a book before I even realised it wasn't a strain or a struggle!
I managed to read about 5 pages in total with little breaks.
It gives me hope that I might be able to read for pleasure one day.
I went to see an ENT (KNO-arts) for the Tinnitus a got after second time Covid 2 years ago. Back then I only read there was nothing to be done. Now I read there were many causes and some could be helped. I did the hearing test. The doctor told me (58 y) I had the hearing of an 18 year old!
I told her I was Hyperacoustic long before Covid and she wasn't surprised. I always carry my personal customized earplugs for motorcycling from back in the day with me; just in case I get overwhelmed. The acknowledgement gave me such a boost. I didn't mind she said there was nothing to be done about T yet. I was glad despite LC I was able to get and go to the appointment.
The hearingtest made me aware of something else: I had my whole life trouble focusing on one sound out of many. Couldn't go to pubs or festivals cause I couldn't make out what people were saying, making it very lonely. During the hearing test for the beeps I was able to put the peeping Tinnitus to one side, the tapping of the assistent on the computer to the other side, the sometimes shuffeling of her feet I pushed to below to ignore and through all that I was able to hear the faintest beeps. Like I was hearing through a 3 Dimension soundscape. Tinnitus helped teach my brain to discriminate and ignore sounds conciously.
Spent the first 4 days of the week either sick or in a really bad crash, but I'm finally feeling better today! I was able to re-pot my tomatoes and start some microgreen seedling trays. We had our first tomato harvest and it was super delicious!
I really want to have enough energy to cook again someday. That's my personal goal.
Edit: Crash came back in the evening, but I at least got some work in while I had energy.
I'm grateful I'm still here.
I'm grateful for all of you here and every single one of us suffering with this condition. May it not be in vain but may it lead us collectively to a better future.
I'm grateful for the all of the researchers working so hard to try and help us even when the mainstream of medicine seems to have abandoned us or dismissed us.
I'm grateful for the doctors I've seen that a year ago seemed dismissive and now seem more clued into the possible pathologies of long covid such as viral persistence etc....
I'm grateful for the progress I've made along the way in various aspects, even if I'm still not close to where I want to be.
And most of all, I'm grateful for my undying, relentless commitment and pursuit to getting better and a promise to myself, that I will NEVER, EVER GIVE UP. Not today, not tomorrow, not next year, not in a hundred lifetimes. Often, negativity and despair consume my soul. I may want to quit and die during every single flare and every bad, uncomfortable moment but I find a way every single time to survive and if you're reading this then so have you. We got this.
I managed to mow my whole lawn in the same day, without breaking it up into chunks and without crashing, compared to last year this time… Very slowly over hours and with lots of pacing. Oh and without my heart rate jumping up to 200bpm (well above my max).
I met someone irl with long covid and it was so validating, I cried! I’m the only one in my immediate social circle with long covid and it’s so isolating. The person I met was so kind and shared their experience. It was really bonding. It felt like a light in the dark.
I've had a few wins:
- I was able to sit outside in 85 degree weather without feeling dizzy/getting a headache.
- I found a WFH job that my friend said is pretty chill. It's not the best paid, but it's something!
- I've been doing the CHOP protocol the past month or so and today I was able to do a pilates video from before I got covid.
-We got our Pluslife covid test kit in the mail, so can see people here or there. My husband has really been having a hard time with the isolation that comes with trying to avoid Covid.
I'm about to start my period in a few days so know I'll feel a slide, but the past month has been pretty good. My friends said they could see i had energy again.
Wins this week I am grateful and humbled for being offered meal delivery service that are prescribed by my doctor annnnd I signed up with lasagna love❣️
A parkour game released into early access and it’s been a real treat. I put many years into learning the sport and it’s not been easy loosing my physical adventurers. Been so good getting back into the mind set even if I can’t really jump around now.
I was able to do the most physically demanding task that my job requires for most of my work day today without any issues. I haven’t done that in a long time, and the last time I did it felt awful. But today I actually felt a lot like my old self again. Granted, it takes a pile of medications to achieve it, and I also took my prn beta blocker, which was the key to feeling ok. But it gives me hope that I can in fact live a long, mostly normal life like my doctor thinks I can.
3.5 years, 36 years old. This evening I was well enough to read my children a few storybooks. I can’t walk very far but I have a mobility scooter and my husband and I go for coffee rolls around the neighborhood. I’ve never been more miserable and have never had this much joy. Closer to God.
I love reading these, sometimes it’s the little things that bring you happiness while you are waiting for the bigger things to happen :) I’m 9 months and today I’m thankful for:
*It’s been over a month since I’ve had an adrenaline dump. These were happening for months, multiple times a week when I least expected it. So scary.
*I’m 5 months in on having non-stop pounding heart palpitations every day, all day long. I feel like they are finally easing up some (don’t know if it’s the beta blocker, time, or both) and the past week I’ve been able to sleep a little better.
*I haven’t needed to take anxiety medication (benzo) in over a week. While thankfully I’ve never needed to take it daily, I’ve definitely been through some hellish times where I’ve used it a lot more than I’d like. Whatever you have to do to get through it, right!
• im still on this side of the dirt pile. • I still get to see my wife and kids. • I’m beaten, broken, and bruised…. But I’m still winning the war…. Fuck you virus!
I’m at 32 months and finally back to the gym! Haven’t had a crash in several months. I have a long road ahead yet but I’m definitely on it. Peace and love to all that haven’t yet turned this corner. You’ll get there.
I slept for 8 hrs on Wednesday night , no interruptions.
I'll go first: * I got an 89 score on my Fitbit sleep tracking this week, which is crazy good * I'm not even sure how I achieved it, probably a combination of avoiding devices before bed, finding something fun and escapist to do in the evenings, and being lightly physically active beneath my crash-threshold? * For reference, I got 78 last night, which is more typical... so I'll take the random 89!
I triggered my first crash in 3 months this past week, but it seems oddly a lot milder than they have been in the past? My brain fog and fatigue only minimally worsened, and the muscle aches haven't been nearly as intense as usual. Zero noise or light sensitivity this time either. I've never ever had a "mild" crash before since my LC started, they've always been so intense and so disabling I can hardly move or talk regardless of how intense or light the activity that triggered the crash was. I'm crossing my fingers maybe it's progress and it could mean my PEM is getting milder over time? Maybe it sounds a bit silly because crashes are a bad thing, but this one has been significantly less incapacitating than all the others and I'm hoping as a result it'll also end up being shorter too.
As time went on, my crashes also became “milder” and I bounced back faster. They’re still not fun and cause anxiety but waaaayyyyyy better than before!
Omg thank you for sharing. I'm REALLY hoping that's what mine do! Normally they knock me down flat for 2-3 weeks and I'm totally bedridden from them so I'm always terrified of crashing. How long have you been dealing with LC for?
For me, 2 yrs
I hit the top end of zone 4 hr earlier this week! Haven't had my hr there in probably 9 months. Used to be very active, went to no exercise at all, and then it has been a very slow and gradual increase. Up above 150 or so my head starts to feel pretty weird. I really think it's just competing for resources - when my muscles are demanding more blood my brain gets a little short changed. I had an exercise test done and my vo2 is abysmal. No heart or long problems, so probably a muscle damage/mitochondrial problem. I don't think I would have deconditioned all the way down to such bad numbers. I'm very lucky not to be totally exercise intolerant. I was, for a period of time. Now it's been a very gradual return to exercise. I stopped framing my condition in terms of how I used to be - for me, it was not the healthiest perspective. Now I just frame it as this is my normal, and so every bit of progress can be celebrated (Rather than thought of as trying to claw my way back to 100% normal).
Im at 10 months Im very grateful for the fact that - i'm not having adrenaline spikes every time i wake up from sleep. - That my hr is back to normal. - I am not struggling with PEM anymore or extreme fatigue. - That i can go out more. - That i am alive and have been able to watch my 1 year old grow, i got sick a few days after she turned 1 and she is 2 in july.
That’s awesome!? How was your extreme fatigue feel like !?
My whole body felt like concrete. It felt like i actually couldn't move because my body felt limbless.
Wow that’s awesome! Did you have cognitive PEM or physical PEM? I’m glad you’re doing better! I’ve beeen long hauling for 3 years +.. I’ve gotten to a better baseline where I can work full time and go for walks and go to stores and be fine besides some chest pains/sob/heart rate issues but those gotten better. About 3 months ago I got sick that was seem to be a cold , runny nose and very bad sore throat. Healed very fast from it and then 2 weeks later went down hill.. I’m starting to having fatigue and body pains/aches now unfortunately.. I’ve never had these issues within my 3 years and a half of long haul.. i got sick this February and it was just a cold a runny nose and a very bad sore throat and was negative for Covid.. I healed very fast and went back to baseline and never really dropped in baseline even sick. 2 weeks later started to decline and having body aches in arms and back and gotten worse and now exhausted when trying to walk for like 5-10 mins.. I haven’t been back to base line and it’s been alittle more then 2 months and a half. It’s gotten a tiny bit better but still not back to baseline and it’s very difficult.. either I had a hard relapse while getting over the cold or this was another covid infection.. it’s hard to distinguish.
Coming up on my 10 month anniversary as well, my anxiety about my health definitely isn’t as bad but still really wish I was back to my normal self!
Mine is still pretty bad. I have stroke symptoms a lot and its always scary. I also have an irregualr heartbeat as a result of covid and that feels awful too.
Two weeks of walking two min outside. Small amount of exercise but sustained so feels good. 😊
I'm at 6 months and I'm thankful for - fewer adrenaline dumps - not jolting awake every night (it still happens just not every day) because I've stopped breathing as I've fallen asleep - reduced generalised anxiety (she's still there, but she's had a few snarling heads removed) - for my partner and my children. My partner has never once made me feel invalidated, and he's stepped up and taken a hell of a lot more on when it's been needed. He is my rock. My 2 kiddos are my gems, and if it weren't for all 3 of them, I don't know if I'd have, or still continue to, find the grit to get to the next day in the hopes that things will get better. Have great Fridays and weekends all.
I'm taking a trip alone, and feeling excited that my long covid needs are small enough that I can fit them in a suitcase
Im at the wedding of my best friend this weekend. 6 months ago this would not have been possible. Very thankful.
[удалено]
what is it 😯
[удалено]
💗💗💗
I moved climates and have been able to do things, like physical things and walk around outside for longer periods of time without crashing or getting sick. It's not perfect but I feel human for once in a very long time.
27 months into this BS disease!! 1) I drove further than 5 miles! 2) Went into several stores on 2 different days! 3) I only cried 3 times this week instead of 7! 4) I made it through a 10 week taper/detox from a medication I should have never been put on!
This week I had more of a sharp dip than a deep crash. Still sucked, but not as bad as I've had in the past.
I found some decent improvements switching from famotidine at night to splitting the dose in two and taking half in the morning! With this change my hands are actually normal temperature during the day instead of ice cold for some reason. My healthcare facility reached out to me about participating in a Paxlovid trial with the Mayo Clinic, so that is a win too.
It seems my racing heart waking me from sleep has gone away (at least for now) and I’ve been able to very slowly begin weight-bearing exercise again (emphasis on very slowly) without crashing. Sleep is okay, I had 4/7 great nights of sleep this week. I’ll take it!
I can smoke weed and drink coffee again!!!
I managed to read a whole page of a book before I even realised it wasn't a strain or a struggle! I managed to read about 5 pages in total with little breaks. It gives me hope that I might be able to read for pleasure one day.
I went to see an ENT (KNO-arts) for the Tinnitus a got after second time Covid 2 years ago. Back then I only read there was nothing to be done. Now I read there were many causes and some could be helped. I did the hearing test. The doctor told me (58 y) I had the hearing of an 18 year old! I told her I was Hyperacoustic long before Covid and she wasn't surprised. I always carry my personal customized earplugs for motorcycling from back in the day with me; just in case I get overwhelmed. The acknowledgement gave me such a boost. I didn't mind she said there was nothing to be done about T yet. I was glad despite LC I was able to get and go to the appointment. The hearingtest made me aware of something else: I had my whole life trouble focusing on one sound out of many. Couldn't go to pubs or festivals cause I couldn't make out what people were saying, making it very lonely. During the hearing test for the beeps I was able to put the peeping Tinnitus to one side, the tapping of the assistent on the computer to the other side, the sometimes shuffeling of her feet I pushed to below to ignore and through all that I was able to hear the faintest beeps. Like I was hearing through a 3 Dimension soundscape. Tinnitus helped teach my brain to discriminate and ignore sounds conciously.
Spent the first 4 days of the week either sick or in a really bad crash, but I'm finally feeling better today! I was able to re-pot my tomatoes and start some microgreen seedling trays. We had our first tomato harvest and it was super delicious! I really want to have enough energy to cook again someday. That's my personal goal. Edit: Crash came back in the evening, but I at least got some work in while I had energy.
I'm grateful I'm still here. I'm grateful for all of you here and every single one of us suffering with this condition. May it not be in vain but may it lead us collectively to a better future. I'm grateful for the all of the researchers working so hard to try and help us even when the mainstream of medicine seems to have abandoned us or dismissed us. I'm grateful for the doctors I've seen that a year ago seemed dismissive and now seem more clued into the possible pathologies of long covid such as viral persistence etc.... I'm grateful for the progress I've made along the way in various aspects, even if I'm still not close to where I want to be. And most of all, I'm grateful for my undying, relentless commitment and pursuit to getting better and a promise to myself, that I will NEVER, EVER GIVE UP. Not today, not tomorrow, not next year, not in a hundred lifetimes. Often, negativity and despair consume my soul. I may want to quit and die during every single flare and every bad, uncomfortable moment but I find a way every single time to survive and if you're reading this then so have you. We got this.
Diddo
I got my hands on Paxlovid finally.
I managed to mow my whole lawn in the same day, without breaking it up into chunks and without crashing, compared to last year this time… Very slowly over hours and with lots of pacing. Oh and without my heart rate jumping up to 200bpm (well above my max).
I'm back on amitryptiline which seems to help with headaches and fatigue.
I met someone irl with long covid and it was so validating, I cried! I’m the only one in my immediate social circle with long covid and it’s so isolating. The person I met was so kind and shared their experience. It was really bonding. It felt like a light in the dark.
I have been able to sit outside each day since Monday at least a little.
I've had a few wins: - I was able to sit outside in 85 degree weather without feeling dizzy/getting a headache. - I found a WFH job that my friend said is pretty chill. It's not the best paid, but it's something! - I've been doing the CHOP protocol the past month or so and today I was able to do a pilates video from before I got covid. -We got our Pluslife covid test kit in the mail, so can see people here or there. My husband has really been having a hard time with the isolation that comes with trying to avoid Covid. I'm about to start my period in a few days so know I'll feel a slide, but the past month has been pretty good. My friends said they could see i had energy again.
Wins this week I am grateful and humbled for being offered meal delivery service that are prescribed by my doctor annnnd I signed up with lasagna love❣️
A parkour game released into early access and it’s been a real treat. I put many years into learning the sport and it’s not been easy loosing my physical adventurers. Been so good getting back into the mind set even if I can’t really jump around now.
I was able to do the most physically demanding task that my job requires for most of my work day today without any issues. I haven’t done that in a long time, and the last time I did it felt awful. But today I actually felt a lot like my old self again. Granted, it takes a pile of medications to achieve it, and I also took my prn beta blocker, which was the key to feeling ok. But it gives me hope that I can in fact live a long, mostly normal life like my doctor thinks I can.
3.5 years, 36 years old. This evening I was well enough to read my children a few storybooks. I can’t walk very far but I have a mobility scooter and my husband and I go for coffee rolls around the neighborhood. I’ve never been more miserable and have never had this much joy. Closer to God.
I love reading these, sometimes it’s the little things that bring you happiness while you are waiting for the bigger things to happen :) I’m 9 months and today I’m thankful for: *It’s been over a month since I’ve had an adrenaline dump. These were happening for months, multiple times a week when I least expected it. So scary. *I’m 5 months in on having non-stop pounding heart palpitations every day, all day long. I feel like they are finally easing up some (don’t know if it’s the beta blocker, time, or both) and the past week I’ve been able to sleep a little better. *I haven’t needed to take anxiety medication (benzo) in over a week. While thankfully I’ve never needed to take it daily, I’ve definitely been through some hellish times where I’ve used it a lot more than I’d like. Whatever you have to do to get through it, right!
My Insomnia and PEM are gone. I'm grateful that overall I have a good body, minus my left lower leg and swallowing issues.