~~The Bedridden Club~~

[[La...]]

Ladyden...WOW JUST WOW!!!  I love your explanation it's so encouraging.

 

😇😇😇

Thank you Dianne I’m just sharing my experiences and what helped me immensely. Distracting any way we can never gets old. It’s our most valuable go to. 

I’m glad what I said helped you too. I myself have to remember my words when I’m having a rough day. I pray your day is a good one today. ♥️🌹

[[Di...]]

Thank you Lady.

Today is one of those days for me I'm afraid I haven't coped very well today.

 

Hope you are having a good day.

😊

[[La...]]

Dianne I’m getting my butt spanked the past few days. This 20 months is rough so far. But as Sage said, I’m just pushing through doing what I can with self care. I’m sorry that you’re in the same boat. Wow this sucks! We’re all going to feel so strange when we’re out of the bed most of the day everyday. But that strange will be so welcomed! I can’t wait to live a normal life again. The waves make us question that happening but the windows let us know that we’re well on our way to that manifesting as true. That’s what I hold on to. 

 

Time, patience and much waiting is so difficult at times when we’re getting beat down by waves and symptoms that doesn’t make any sense. Somebody said on a post I read….” If I could just understand how and why this is happening then I’d be able to handle this better.” Well, honestly, I’m not so sure about that! Because for one, if it was something very disturbing happening when we have waves then it would freak us out more. Making us worse from the stress of KNOWING. Some things IMO are best left unknown. The other reason is, then we would try to do something about it that might cause us to make things much worse. We are our own worst enemy in many cases. Lastly, what we do know is already too much to handle. We know our gaba receptors are down regulated and altered while we took those dangerous pills. Their job is to balance out the flood of glutamate that naturally occurs in the brain. Because of damaged or down regulated gaba receptors, the balance is way off. This is what causes the waves. Our brains doesn’t take a break from functioning just because something isn’t right. It tries to maintain homeostasis 24/7. It is asking damaged receptors to do a job it’s created to do. That’s like having a stapler with little or no staples in it. You can put papers to be stapled in it all you want but it won’t get stapled until more staples are put in. Therefore our gaba receptors have to regenerate with the correct normal components in order to do the job of balancing glutamate. Until it does, waves we will have. Depending on which gaba receptors it targets to do the job, depends on how well our brain functions. If good/ normal  receptors are given the job, then we get windows. Jobs are being handed out ALL day. So, if it’s given to normal receptors then nice windows occur any time it happens. This is why we can get waves and windows within ONE day. Some of the staple guns ( gaba) have staples and some don’t. There’s NO WAY possible to know when the job will be given to a good receptor. Therefore, this is how and why it’s not linear. This is why it’s so unpredictable and can seem to go backwards. But, as those normal gaba receptors increase in numbers, the waves occur less until the point of there’s hardly any more abnormal receptors to be found. That’s when we are healed. Anyway, that is what I have researched and learned about our brains/ this recovery process. Trying to take this or that while it is fixing itself gets in the way. IMO it’s because introducing other substances requires the brain to now have to take on an extra job of processing what was put in the body. Therefore, it reacts not in a good way most of the time. IMO it is much better to leave the injured brain alone to heal. To not be like a kid under mommy’s feet wanting to help while mommy is trying to cook. That kid is certainly in the way! Mommy is the one who knows what needs to be done. She knows how to cook. Now, Mommy IS going to cook whether that kid is in the way or not. But it sure does disrupt it and even prolongs the time she gets food on the table because she’s having to stop to shoo the kid away. Make sense? I hope that makes sense. Having said that, I’m not kicking or judging anyone that has to take other medications while they’re recovering. Even Dr Ashton said sometimes other meds are necessary but make sure that they are. I believe it’s because when giving the brain a new job of processing other meds or supplements, it has to turn the attention to processing that while fixing the gaba has to wait. It’s like having a busted leaking sink occur while you’re painting a wall. That wall will have to wait. Sorry if this was too long. Understanding this has helped me to accept this whole ordeal and trust my brain knows what it’s doing to heal me. Wishing you happy healing.

[[...]]

I’m still here

I was having a heck of a good window but then my wife got sick and started running a fever, so 4 days this week shes been sick, tested negative multiple times for covid so its some other virus, negative for flu as well.

Now Im down with it bad… Fever, chills, and of course the dreaded benzo belly which is making it hard for me to take in fluids, but im trying. Please say a prayer for the both of us, it would mean a lot. I tested neg. for Covid as well, yesterday and also today, so whatever this bug is is really rough and not to mention all my s/x are ramping back up… plus major anxiety about being so sick with the other non-benzo related health issues I have. Lord, please help us, in Jesus’ name.

 

God bless

 

z

[[Di...]]

Ladyden  thank you.  Hope you doing better now my wave is still with me ugh!

 

Zman  I am so sorry.  Prayers for you and your wife.

 

[[...]]

Ladyden  thank you.  Hope you doing better now my wave is still with me ugh!

 

Zman  I am so sorry.  Prayers for you and your wife.

 

 

Thank you DD,

 

I hope everyone is feeling decent today…

I’m getting my butt kicked by this virus… I havent been this sick in years

I’m trying to not let the fear win. This was definitely NOT a good time for me to get a virus like this…

I feel so weak and I hope it passes soon.

[[Di...]]

Zman I am so sorry you are struggling so bad.  Lifting you and your wife up in prayer.

❤

[[Th...]]

Life kicked my butt today. Maybe tomorrow will be better. I wish I had a stress tolerance instead of meltdowns because someone talked to me. I can't calm myself. I have to wait. If I didn't have anhedonia I could self sooth somehow.

 

Best to everyone

[[La...]]

Hope you all will feel better today and get some relief. I had a good weekend with the past two days feeling pretty decent. In this journey we are grateful for any relief no matter how brief. We just have to keep going to let the days stack up. The good thing is those days don’t stack against us but they accomplish healing. It’s difficult to have a good day or two even a month sometimes then get slammed. It makes us feel that we haven’t made progress but we have. I just wish there was a linear path and once we feel better we remain that way. Very wishful thinking, I know. One thing we don’t have to do is worry about it. At the end of the day, we know these symptoms don’t define the rest of our lives. They are temporary. I keep reminding myself that I’m healing and it’s ok that I’m tired of being like this. I’m sure you all feel the same way. Especially when you get to the 1 year and beyond point. Tired or not, the healing takes place at its own trajectory pace. I hope you all push a little bit to get up to move around as much as you can when you can. Being in bed takes your physical strength as well as atrophy of muscles. Speaking from experience here. I’m working on reconditioning my body when I’m not laying down in a wave. Every little bit counts.

Enjoy your day and keep positive.

[[...]]

I was having another decent week, not really out of bed much at all but less pain and anxiety… but today I did indeed get slammed with diarrhea and pain and high blood pressure. It’s rough trying to calm yourself down when you have all this hit you out of nowhere and all of the sudden you just feel like there’s no hope. Just yesterday I was planning on going somewhere out of the house and trying to walk a little maybe get a bite to eat today since my wife is off work but no… wake up with swollen stomach and pain and check my vitals and everything is not great. I have to see a cardiologist tomorrow and I’m terrified because I’ve not really left my room but one or two times in months. I get white coat syndrome real bad too. So my brain is already expecting a panic filled day. Please pray for me

[[Di...]]

Hey Zman,

So glad you were feeling a little bit better.  I am so sorry today hasn't been good for you.  The benzo witch loves to see us get our hope up a little so she can knock us down.  I'm praying for you to have a much calmer day tomorrow 

Hugs and prayers ❤

[[...]]

Hey Zman,

So glad you were feeling a little bit better.  I am so sorry today hasn't been good for you.  The benzo witch loves to see us get our hope up a little so she can knock us down.  I'm praying for you to have a much calmer day tomorrow 

Hugs and prayers ❤

 

Thank you so much DD, it honestly means a lot. I feel like Im mourning the person I used to be who could do normal things like walk and enjoy myself and be a real part of the world going on around me

[[Di...]]

Hey Zman,

So glad you were feeling a little bit better.  I am so sorry today hasn't been good for you.  The benzo witch loves to see us get our hope up a little so she can knock us down.  I'm praying for you to have a much calmer day tomorrow 

Hugs and prayers ❤

 

Thank you so much DD, it honestly means a lot. I feel like Im mourning the person I used to be who could do normal things like walk and enjoy myself and be a real part of the world going on around me

 

I know Zman I am so sorry 

[[...]]

How is everyone? Is anyone still completely bedbound? I dont want this group to fall by the wayside… im noticing not many people are posting anymore and we really need to support each other. Myself, i am in a really bad spot after a few great days and some minor crappy ones now im in a wave that has my entire back seized up all the muscles aching and throbbing and i can narely move even to type this on my phone. My gi issues are all over the place. It seems like my really bad waves start right when i have diarrhea. During mu windows i go 3-4 days without even needing to poop (sorry) its almost like the food is storing up and my body is hetting nutrients from it during that time, whereas when i have diarrhea i start having the muscle spasms and weakness and pain non stop. Can anyone relate? Lets all continue to support each other and pray for each other. I know my spirit is in need of some uplifting. I hope you are all feeling at least ok today, love you and god bless

[[Di...]]

Hi Zman,

I am so sorry.  Keep remembering those good days I know they will come back.  I have mostly been laying around the past 4 days lots of anxiety and panic.  I had a couple of good days then wham.

 

Praying for you and everyone else.

 

Prayers and hugs ❤

[[sa...]]

How is everyone? Is anyone still completely bedbound? I dont want this group to fall by the wayside… im noticing not many people are posting anymore and we really need to support each other. Myself, i am in a really bad spot after a few great days and some minor crappy ones now im in a wave that has my entire back seized up all the muscles aching and throbbing and i can narely move even to type this on my phone. My gi issues are all over the place. It seems like my really bad waves start right when i have diarrhea. During mu windows i go 3-4 days without even needing to poop (sorry) its almost like the food is storing up and my body is hetting nutrients from it during that time, whereas when i have diarrhea i start having the muscle spasms and weakness and pain non stop. Can anyone relate? Lets all continue to support each other and pray for each other. I know my spirit is in need of some uplifting. I hope you are all feeling at least ok today, love you and god bless

 

Hi Zman.  I have the same issue - constipation in a window and diarrhea in a wave.  I've thought the same thing, maybe the body is saving the food to get as much nutrition as possible from it?  I don't know it.  It's bizarre.  My abdominal pain and digestive issues are definitely associated with back pain too.  I think people sometimes don't associate the two, but the back is very tightly associated with digestive function.  Pain and tension in the back will often equal digestive upset. 

 

I know it feels like you're in a pit from which you may not ever dig yourself out, but it will gradually get better.  I think we all hate how slow and agonizing the recovery is, but it's still recovery.  I want to share a video with you that helped me yesterday to feel calmer:  https://youtu.be/NzFQDbBnKMU 

[[La...]]

Hey everyone! Sorry for my absence. I’ve been taking some short time to regroup. I’m doing much better now since doing that extra love.

Zman yes I can relate. I used to take turns with constipation and diarrhea. Although uncomfortable it’s normal for the gut to act up erratically like that seeing they’re packed with gaba receptors. My diarrhea was always coupled with a magnet pulling sensation. Now that it has died down very much, I don’t get much diarrhea anymore except when the mild pulling pays me a quick visit. For 2 years it was mostly constant. The past 2-3 months it turned a corner and I’m so glad. The constipation I get maybe once a month for a day. It also is now milder. With time, my friend yours will too. And yes we need all the support we can get!  I totally agree. To answer your other question….I’m no longer in bed all day as of about a month ago. Now I’m in bed maybe half a day total. I get up every hour to walk around or sit up for a bit. I give myself tasks to do so I’m forced to get up. Then I rest an hour then repeat. I also go outside for short walks when I can. Sit up to watch tv on the couch when I can. But I’m still classified as bedridden because unfortunately this is where I have to be when I’m in waves or my ataxia ( unbalanced boatiness) hits me. I still get those episodes ( waves) nearly everyday but they are milder and shorter duration. At 21 months now….YAY! You would think it would be over but more time is needed so I accept it and keep doing what I can. Stay positive each day. Don’t let your symptoms define you. They’re temporarily a part of your life right now but they’re not you. 

Dianne I had the same thing going. A couple of consecutive days of feeling decent then wham! So annoying! Wouldn’t it be nice to just stay in a more decent place? Those windows are so lovely. But one day soon, we’ll have that forever window and be symptom free to enjoy our new healed lives. I’m excited for that life! I have so many things I want to do again even some new things. Our new lives are just waiting for us. It’s not a pipe dream. It will be our reality. I know when it’s really tough as Zman said, it’s hard to even imagine that is our fate. But it is. I’m a living witness that time is our healer. Every time I do something new ( things I used to do) I see how much I’ve healed. It gives me more confidence. I’m so grateful to God that this isn’t permanent. It’s hard to believe that sometimes….but it’s so anyhow! Only time can prove that it’s true. Today might suck but that won’t be our future. Feeling is healing going on.

Sage i also noticed when I have tight back muscles I am constipated. Wow how strange. I didn’t notice this connection at first until last week I woke with back pain and tummy tightness as part of my morning dread. The thought crossed my mind  that I bet I’m constipated. Sure enough I was! This is why it’s important to discuss these things with each other. It gives us peace of mind. I’m not sure about it saving the nutrition. I just simply think the tight muscles are causing it. But I could be wrong. Or it might even be both….as you said, we don’t know. What we do know is that it sucks! So Zman shouldn’t apologize for describing what’s happening. He’s definitely not the only one. I’ve had to put warm towel on my bum after trying to go. Painful! Unfortunately we get all kinds of “ gifts” from this recovery. But they’re never good ones.   

 

🤗🤗🤗🤗❤️🤗🤗🤗🤗  Hope you all that are stuck in bed make the best of your situation and do something that brings a smile to your face in spite of it all.

[[Th...]]

Hi Zman

Always nice to hear from you. Yep still here, still can't put on weight. I feel like if I could maybe I'd be stronger? I really understand the pain of GI problems. I had a phase where I had diarrhea all the time and I was worried my body couldn't get nutrients because it was going through so fast. Weakness and diarrhea seem to go together. Then body didn't want to poop and I was worried it was stuck (at first I was happy because I thought maybe the body is sucking up nutriance). Now I am tired and my body does whatever. Can move around the house a bit, but it is as far as I get. Would like to have some of that muscle. My partner arm wrestled me to break up the silence ( They won easily in seconds of course) and hours later it felt like I got back from the gym. Just seeing your post make me feel not alone. And I hope you feel the same.

 

I think I had my first good day. It is hard to say because I haven't felt good in so long and I have anhedonia. But for that day I was not in pain for hours after I ate. I ate a whole pizza. I was not in any mental pain. I was able to have a full conversation with someone other than my partner. It seemed ok. I also felt embarrassment, which I was really glad for because I didn't think I could feel that.

 

 

LadyDen

Thank you as always for your positivity. You are wonderful.

[[La...]]

STITCH 

You’re very welcome dear! Wow I’m smiling big on your behalf. After reading your posts, I’m very happy that you had a window. And yes that’s exactly what that is. Aren’t they lovely? You even had pizza! And no pain or feeling bad after eating. My dear, you have healed a bit! The biggest tell tell sign is that you are feeling different emotions. I don’t blame you for not caring what emotions it is….

Thank you for giving your encouraging support. But let me help you win the next arm wrestling. 😆 Here’s what you do….

Buy an arm wrestling table top machine. 🤫🤐 secretly! 🤫  then blindfold your partner. Take out the machine and grunt instead of using your real arm. 😂😜🤣  But don’t worry, it’s not cheating unless your partner sees it.

[[Th...]]

LadyDen

 

Your post gave me such a smile. I couldn't help it when I read about the arm wrestling machine!

Oh my if this is true, I had my first window. I suppose it was. They are nice. Can I order more?

 

Thank you for your reply. My partner will be happy to hear that I had the mythic window.

 

Your whole post was a gift of smile. 

[[Di...]]

Hi All,

Lady as always thank you for your encouragement.  It's so wonderful that you are improving. 😊

 

Stitch so glad you had a good day and was able to eat a pizza that is awesome.  May you have many more of those days.

 

Zman I hope today is being kind to you.  You deserved an extra dose of kindness.

 

Everyone else wishing you brighter days ahead.

 

Hugs and prayers ❤

[[La...]]

LadyDen

 

Your post gave me such a smile. I couldn't help it when I read about the arm wrestling machine!

Oh my if this is true, I had my first window. I suppose it was. They are nice. Can I order more?

 

Thank you for your reply. My partner will be happy to hear that I had the mythic window.

 

Your whole post was a gift of smile. 

More windows are coming your way! Believe that my dear. If you had one then you’ll get another. It’s a great sign….the brain is getting it right! 

Now I have a love hate relationship with them 😂 I love them when they come and hate to see them leave. But I know I’ll get another one. Keep making progress. You got this!

[[La...]]

Hi All,

Lady as always thank you for your encouragement.  It's so wonderful that you are improving. 😊

 

Stitch so glad you had a good day and was able to eat a pizza that is awesome.  May you have many more of those days.

 

Zman I hope today is being kind to you.  You deserved an extra dose of kindness.

 

Everyone else wishing you brighter days ahead.

 

Hugs and prayers ❤

You’re very welcome sweetheart. Thank you for your support as well. I’m happy to hear that you’re ok. Wishing you a brighter day too.

[[Di...]]

Lady, Stitch, Zman and anyone else I may gave missed,

How is everyone doing?  Better I sure hope.  I'm still hanging on.

 

Hugs to all!

[[Th...]]

Hello Diane

 

Thank you for your well wishes earlier.

LadyDen is right it's hard to watch windows leave. I feel slipping into the bad again and thinking; no wait, I'm not ready! But I am really glad it came. I didn't think I would ever get one.

 

Keep hanging on. Sometimes it feel like we are holding on to a raft in a storm for dear life.

 

 

Does anyone know if windows really keep get better after waves? Is it a general rule or is it kinda a wives tale?

Also do symptom patterns change after a window or do they change at anytime? I'm I looking for a method where there is only madness?