2 years

[[st...]]

Hi guys. Who here is at 2 years. I'm week away.  Man I thought for sure I'd be healed or atleast feel close to it. I feel overwhelmed with everything. Cooking, shopping, getting out of bed. My mind feels blank alot or like it's shutting down. I'm really trying to remain optimistic. I could use some reassurance. I'm really scared being this disabled this far out. I was able to doordash a few hours a week but have been unable to do so for over a month.  Anyone else the same??

[[La...]]

Hey Steph! I’m in total understanding of how you are feeling and your thoughts. I’m at 41 months ( 42 very soon) and when I was 2 years out, wow I thought I’d be done! But nope, this is a sneaky tricky roller coaster that will allow people to feel better even for a couple of months at a time then boom…back to crap city! BUT, if you put that aside and sit down to write out your progress compared to the year before, you can definitely see how much you’ve healed. Now, it is disheartening to not be where you thought you would or see others around your timeframe doing better. I’d like to advise you not to set yourself a time to be healed by or compare to others because it’s the thief of joy! 
can I be honest? Actually 2 years is not that long considering the majority of others who have healed were at 3- 4-5 years out before theirs was completed. What I do is look at my slow healing as my brain is checking every crevice for injury to repair it. That is a good thing when I think about it. I’d certainly wouldn’t want it to heal just one thing. Please be encouraged that your brain is going to heal in the way and timeframe that’s best for you. AND it’s doing that while maintaining the other functions for the whole body. That’s a big task! I’m just focusing on how glad I am that it can heal. Yes, the amount of time sucks…seems ridiculously long and slow…makes no sense, etc. 

But, you know what? I’d rather it take 3-4 years to get it right than to be permanently like I was….completely debilitated in bed everyday all day and couldn’t even walk! The symptoms and the waves suck but I believe they are signs of more healing happening. Looking at it that way, they’re not my enemy. Those darn pills were! Now they’re gone and has left my brain a hard task to return to homeostasis. I’m so proud of my brain in taking on the job of recovery. 
You hang in there! Grab the positive thoughts and hold on to your belief in your healing. One thing I keep in mind each day is that this illness is well known to whisper “ I won’t ever heal” lies or this is as good as I’ll get thoughts….

currently, I can’t drive still or ride in a car for more than a couple of minutes. So I’ve been housebound all this time. But I know I’ll drive again soon. Many have trouble driving or going anywhere in this recovery. Read the success stories and see how they all regain it back. We will too. 

give yourself whatever time is needed and watch that lie get disproved! Wave at it with your middle finger! 👍🏼🤝

Edited December 13, 2023 by [La...]

[[st...]]

5 hours ago, [[L...] said:

Hey Steph! I’m in total understanding of how you are feeling and your thoughts. I’m at 41 months ( 42 very soon) and when I was 2 years out, wow I thought I’d be done! But nope, this is a sneaky tricky roller coaster that will allow people to feel better even for a couple of months at a time then boom…back to crap city! BUT, if you put that aside and sit down to write out your progress compared to the year before, you can definitely see how much you’ve healed. Now, it is disheartening to not be where you thought you would or see others around your timeframe doing better. I’d like to advise you not to set yourself a time to be healed by or compare to others because it’s the thief of joy! 
can I be honest? Actually 2 years is not that long considering the majority of others who have healed were at 3- 4-5 years out before theirs was completed. What I do is look at my slow healing as my brain is checking every crevice for injury to repair it. That is a good thing when I think about it. I’d certainly wouldn’t want it to heal just one thing. Please be encouraged that your brain is going to heal in the way and timeframe that’s best for you. AND it’s doing that while maintaining the other functions for the whole body. That’s a big task! I’m just focusing on how glad I am that it can heal. Yes, the amount of time sucks…seems ridiculously long and slow…makes no sense, etc. 

But, you know what? I’d rather it take 3-4 years to get it right than to be permanently like I was….completely debilitated in bed everyday all day and couldn’t even walk! The symptoms and the waves suck but I believe they are signs of more healing happening. Looking at it that way, they’re not my enemy. Those darn pills were! Now they’re gone and has left my brain a hard task to return to homeostasis. I’m so proud of my brain in taking on the job of recovery. 
You hang in there! Grab the positive thoughts and hold on to your belief in your healing. One thing I keep in mind each day is that this illness is well known to whisper “ I won’t ever heal” lies or this is as good as I’ll get thoughts….

currently, I can’t drive still or ride in a car for more than a couple of minutes. So I’ve been housebound all this time. But I know I’ll drive again soon. Many have trouble driving or going anywhere in this recovery. Read the success stories and see how they all regain it back. We will too. 

give yourself whatever time is needed and watch that lie get disproved! Wave at it with your middle finger! 👍🏼🤝

Thank you. What a beautiful response. I love your positivity and outlook. I actually bought a poster board a few months back and wrote down symptoms that have gone or even diminished in intensity. It's a good reminder. It's tough though because many have left only to be replaced by others. But like you said maybe it's just that part of my brain doing some unfinished maintenance. I'm sorry you have been sick for so long and unable to drive but like you said all those people that were unable, eventually get back to it. You will too. Again thank you for your encouraging words. Xo

[[jo...]]

I’m 2.5 years out. Not much improvement tbh. Actually a lot of my physical stuff is a lot worse. It’s sadly not unusual. Sorry I can’t offer more but just hang in there 

[[jo...]]

16 hours ago, [[L...] said:

Hey Steph! I’m in total understanding of how you are feeling and your thoughts. I’m at 41 months ( 42 very soon) and when I was 2 years out, wow I thought I’d be done! But nope, this is a sneaky tricky roller coaster that will allow people to feel better even for a couple of months at a time then boom…back to crap city! BUT, if you put that aside and sit down to write out your progress compared to the year before, you can definitely see how much you’ve healed. Now, it is disheartening to not be where you thought you would or see others around your timeframe doing better. I’d like to advise you not to set yourself a time to be healed by or compare to others because it’s the thief of joy! 
can I be honest? Actually 2 years is not that long considering the majority of others who have healed were at 3- 4-5 years out before theirs was completed. What I do is look at my slow healing as my brain is checking every crevice for injury to repair it. That is a good thing when I think about it. I’d certainly wouldn’t want it to heal just one thing. Please be encouraged that your brain is going to heal in the way and timeframe that’s best for you. AND it’s doing that while maintaining the other functions for the whole body. That’s a big task! I’m just focusing on how glad I am that it can heal. Yes, the amount of time sucks…seems ridiculously long and slow…makes no sense, etc. 

But, you know what? I’d rather it take 3-4 years to get it right than to be permanently like I was….completely debilitated in bed everyday all day and couldn’t even walk! The symptoms and the waves suck but I believe they are signs of more healing happening. Looking at it that way, they’re not my enemy. Those darn pills were! Now they’re gone and has left my brain a hard task to return to homeostasis. I’m so proud of my brain in taking on the job of recovery. 
You hang in there! Grab the positive thoughts and hold on to your belief in your healing. One thing I keep in mind each day is that this illness is well known to whisper “ I won’t ever heal” lies or this is as good as I’ll get thoughts….

currently, I can’t drive still or ride in a car for more than a couple of minutes. So I’ve been housebound all this time. But I know I’ll drive again soon. Many have trouble driving or going anywhere in this recovery. Read the success stories and see how they all regain it back. We will too. 

give yourself whatever time is needed and watch that lie get disproved! Wave at it with your middle finger! 👍🏼🤝

This is such beautiful advice. I will say though, for many of us (I believe) we don’t look back a year and see huge healing. My healing has been incredibly slow, at times non existent and non linear. I’m worse than I was physically two years ago. So even if someone looks back and they’re not better or maybe even worse. I think it still (hopefully) means healing!

[[La...]]

On 14/12/2023 at 04:36, [[j...] said:

This is such beautiful advice. I will say though, for many of us (I believe) we don’t look back a year and see huge healing. My healing has been incredibly slow, at times non existent and non linear. I’m worse than I was physically two years ago. So even if someone looks back and they’re not better or maybe even worse. I think it still (hopefully) means healing!

Yes indeed it does mean healing. Thank you for the compliment.

id also like to say from your message that this is a tricky looking recovery. With most healing areas of the body, wee can see the improvement and it stays that way. With the brain disruption we’ve had, it works differently because the brain is the master of the whole body. It’s constantly doing checks, redistributing what’s needed or necessary, keeping the whole body in homeostasis, conducting nerves, starting and stopping various things, being on alert for danger, calming itself, etc etc. When you think about it, that is a lot to do all at once all day everyday including when we are sleeping. Take into account the medication ( benzo, zdrug, antidepressants, etc) that was taken that DISRUPTED that process with each dose. Those of us that are now off, have given our brains yet another job of returning itself to homeostasis. IMO I think it’s slow to do that because it puts the other body functions on the forefront (such as heartbeat, blood pressure, hormones and chemical regulations, all the things need for organ health etc). In other words I think it says “ I’ll get to this repair when I can because right now this or that needs my attention “. So it heals bit by bit. When we get to the point that we’ve healed quite a bit and feeling better, it finds an area or two that could use some tuning up…the result is we feel bad again for a short time. It throws us for a loop because we were doing so well and thought we were just about done with feeling worse. BUT, all of that healing isn’t undone! It just feel that way. 
personally I’m having this happening right now…I was feeling mostly decent each day but Wednesday evening- for sure Thursday morning I was hit with a rough wave of symptoms I haven’t had in a while. This is common at the end of this process. Some of my other long hauler buddies are experiencing the same thing. First thing came to my mind was oh no I’m going to lose my walking ability…not so. I can still walk just fine except more boaty and too sick to just go taking walks. I get up to fix myself a meal and whatever else I need to do. That benzo beast tells lies! Hang in there! 

[[La...]]

On 14/12/2023 at 04:34, [[j...] said:

I’m 2.5 years out. Not much improvement tbh. Actually a lot of my physical stuff is a lot worse. It’s sadly not unusual. Sorry I can’t offer more but just hang in there 

This happened to me at 2 years. I got worse before getting better. Most of my symptoms are physical as well. Sucks but common occurrence.