~~The Bedridden Club~~

[[Di...]]

I am so sorry everyone seems to be struggling so bad today. I completely understand my anxiety is awful.

 

Zman the doctor did the same exact thing to me.  She put me on a beta blocker I had 8-9 different side effects from it the worst was anxiety.  She said I did not need to taper it WRONG that started this whole mess.  I am so sorry that happened to you.

 

Praying for everyone.

Prayers and hugs😇

 

Wow I finally found someone who understands… I’d been trying to explain this to others, but nobody seems to realize the correlation between beta blockers causing problems with benzo effectiveness.

 

Wishing you peace and calm today… God bless

 

Oh yes Zman it is so very real!!!

 

Thank you praying the same for you.

[[En...]]

I don’t get also why we do have so many different symptoms.. I was never anxious before taking Xanax and even during the last 9 months, for me it’s my CNS and vestibular system completely off, I’m really scared it’s going to take a long time

[[Fr...]]

So something that is concerning me that I have been reading says that while laying down may be beneficial for POts it is actually the worst thing you can do. I have been down since August and even before that I went back in read some of my BB post in June and July last year I couldn’t get upright until 5-6 pm. I just had some heaviness and extreme exhaustion and sensitivity to any light noise sound just complete nervous system overload where I stayed in my room and tried to have no stimulus. The weird thing is in March of last year was probably my best month. Just before this crash. April and May were hit or miss anyway I have been in such disarray the past couple weeks and things won’t settle down. I am not sleeping well at all and can’t handle any talking without it bringing on so much pain and heaviness extreme in my body. Just rolling over in my bed gives such a heart racing hot electrical type feeling. I can barely taper and am going back to 3% to see if I can make some head way. I have to be able to survive this and I have had not good thoughts the past week about not continuing on which is not like me the suffering is just so severe and there is no end in sight. And I can’t figure out what went wrong and why I am having such a hard time. I am starting to blame myself when all the heart racing starting I shouldn’t have just gone to bed because now I can’t even sit up and my body is not in a position right now to try because it really does me in and then symptoms are out of control and I can’t taper but I know

I need to get off this last little bit. Just regretting big time becoming so inactive but I thought I was doing the right thing by trying to let my nervous system to be calm to not have any stimulus. I am getting to where I am not sure I will survive this.

[[La...]]

Thanks it’s very difficult to remain optimistic in these days, since I went first cold turkey I’ve been sick, it’s already been 9 months.. it was getting a little better and now this, it’s very disheartening

Hey friend. Might I let you in on a little secret? It’s common to experience milestone waves after feeling better. Did you know about those? They normally happen on 6,9,12,15-16,18-20,24 months and so on if you’re not healed by the 2 year mark. There’s good news and bad news. Bad news is they really suck and can often feel like you’re back in acute. The good news is that you’re not back in acute. In majority of these waves, it’s nothing that you did to cause them and baseline improves when they settle. From what I’ve read, much healing takes place during those pesky milestones. So please don’t be disheartened by them. You’ll feel better again soon. What I did during mine is go back to my old coping skills from my acute days. Meditation with soothing music, slow calming breathing and distracting with Netflix or online games. A good jigsaw puzzle is also great. Hope you come back to shore again soon.

[[La...]]

Enzoit and Ladyden, praying for you both today, as well as FruityPop & everyone else.

I’m trying to take today one minute at a time. Of course, that can make things feel like an eternity, but you can only do what you can do. My iPad may be arriving today and looking forward to that, my vision has gotten so bad that using a phone to post and read posts here has become strenuous, so I needed something bigger. I hope it’s not too difficult to hold on to.

 

God bless

 

 

Zach

Zach that new iPad will prove to be much better for your eyes. I’m glad you’re getting one. I loveeeeee mine. Good to hear from you and thanks for the feel better wishes. I hope you feel better too.

I’m in the same boat as Enzoit….milestone wave. Boatiness is back to being more intense. Oh well, just like before it will settle back down soon enough. Until then I’m binge watching series on Netflix. I might even visit a museum on YouTube a bit later. Have yourself a great day my friend. Hugs 🤗

[[En...]]

Thank you LadyDen, I appreciate your message, I wish you a nice day

[[La...]]

So something that is concerning me that I have been reading says that while laying down may be beneficial for POts it is actually the worst thing you can do. I have been down since August and even before that I went back in read some of my BB post in June and July last year I couldn’t get upright until 5-6 pm. I just had some heaviness and extreme exhaustion and sensitivity to any light noise sound just complete nervous system overload where I stayed in my room and tried to have no stimulus. The weird thing is in March of last year was probably my best month. Just before this crash. April and May were hit or miss anyway I have been in such disarray the past couple weeks and things won’t settle down. I am not sleeping well at all and can’t handle any talking without it bringing on so much pain and heaviness extreme in my body. Just rolling over in my bed gives such a heart racing hot electrical type feeling. I can barely taper and am going back to 3% to see if I can make some head way. I have to be able to survive this and I have had not good thoughts the past week about not continuing on which is not like me the suffering is just so severe and there is no end in sight. And I can’t figure out what went wrong and why I am having such a hard time. I am starting to blame myself when all the heart racing starting I shouldn’t have just gone to bed because now I can’t even sit up and my body is not in a position right now to try because it really does me in and then symptoms are out of control and I can’t taper but I know

I need to get off this last little bit. Just regretting big time becoming so inactive but I thought I was doing the right thing by trying to let my nervous system to be calm to not have any stimulus. I am getting to where I am not sure I will survive this.

Fruity I’m sorry for your struggles. I don’t think being in bed caused you any further harm. Matter of fact,I think the opposite is true when you’re very sick. The body needs much rest while repairing itself. And I know in my case I had no choice but to lay down for a long time because I couldn’t tolerate standing or sitting up. So what choice did I have? Sounds like you’re doing all you can to keep yourself as comfortable as possible. There’s nothing wrong with that. You’re still tapering so you’ll definitely have symptoms and perhaps even more so because you were on more than one medication. That’s quite alot for your poor CNS to repair. But I won’t say that it’s not able to. The brain is amazing. It’s the captain of our body. It knows the body needs it to function properly to give commands so when it’s not “feeling well” it tries to repair itself quickly. It has sooooooooo many tasks to do all at once. Yours is hard at work repairing and trying to function and adjusting to medication reductions. That’s a hefty job right now. You only have a small amount left to taper. Please strongly consider not giving up. There’s so many others before you that was in a similar situation. They hung in there and just continued their taper. The end result was well worth it. They began to feel so much better and healed. It took them some time but they did it. Have you seeked out support on the taper threads? Or searched the older threads?

I wish you a better day. Hugs 🤗

[[Fr...]]

So something that is concerning me that I have been reading says that while laying down may be beneficial for POts it is actually the worst thing you can do. I have been down since August and even before that I went back in read some of my BB post in June and July last year I couldn’t get upright until 5-6 pm. I just had some heaviness and extreme exhaustion and sensitivity to any light noise sound just complete nervous system overload where I stayed in my room and tried to have no stimulus. The weird thing is in March of last year was probably my best month. Just before this crash. April and May were hit or miss anyway I have been in such disarray the past couple weeks and things won’t settle down. I am not sleeping well at all and can’t handle any talking without it bringing on so much pain and heaviness extreme in my body. Just rolling over in my bed gives such a heart racing hot electrical type feeling. I can barely taper and am going back to 3% to see if I can make some head way. I have to be able to survive this and I have had not good thoughts the past week about not continuing on which is not like me the suffering is just so severe and there is no end in sight. And I can’t figure out what went wrong and why I am having such a hard time. I am starting to blame myself when all the heart racing starting I shouldn’t have just gone to bed because now I can’t even sit up and my body is not in a position right now to try because it really does me in and then symptoms are out of control and I can’t taper but I know

I need to get off this last little bit. Just regretting big time becoming so inactive but I thought I was doing the right thing by trying to let my nervous system to be calm to not have any stimulus. I am getting to where I am not sure I will survive this.

Fruity I’m sorry for your struggles. I don’t think being in bed caused you any further harm. Matter of fact,I think the opposite is true when you’re very sick. The body needs much rest while repairing itself. And I know in my case I had no choice but to lay down for a long time because I couldn’t tolerate standing or sitting up. So what choice did I have? Sounds like you’re doing all you can to keep yourself as comfortable as possible. There’s nothing wrong with that. You’re still tapering so you’ll definitely have symptoms and perhaps even more so because you were on more than one medication. That’s quite alot for your poor CNS to repair. But I won’t say that it’s not able to. The brain is amazing. It’s the captain of our body. It knows the body needs it to function properly to give commands so when it’s not “feeling well” it tries to repair itself quickly. It has sooooooooo many tasks to do all at once. Yours is hard at work repairing and trying to function and adjusting to medication reductions. That’s a hefty job right now. You only have a small amount left to taper. Please strongly consider not giving up. There’s so many others before you that was in a similar situation. They hung in there and just continued their taper. The end result was well worth it. They began to feel so much better and healed. It took them some time but they did it. Have you seeked out support on the taper threads? Or searched the older threads?

I wish you a better day. Hugs 🤗

 

Thank you Lady- I have sought support but most just say to rush off and that isn’t something I can do right now. I am in a very sensitive situation.

[[...]]

Bloating is really reallly bad today, set off a bad panic attack and my BP went super high again. Not doing good on top of full body pain. Lord please help me.

[[Di...]]

Ladyden, Enzolt, Fruitypop, Zman and anyone else on here struggling badly today I am so very sorry.  Praying for all of you.  I know how terribly hard this is.

Hugs and prayers ❤

[[Fr...]]

Ladyden, Enzolt, Fruitypop, Zman and anyone else on here struggling badly today I am so very sorry.  Praying for all of you.  I know how terribly hard this is.

Hugs and prayers ❤

 

 

Thank you Diane very thoughtful! I wish the same for all of you. Big Hugs to everyone.

[[...]]

Ladyden, Enzolt, Fruitypop, Zman and anyone else on here struggling badly today I am so very sorry.  Praying for all of you.  I know how terribly hard this is.

Hugs and prayers ❤

 

Thank you

[[Fr...]]

Ladyden, Enzolt, Fruitypop, Zman and anyone else on here struggling badly today I am so very sorry.  Praying for all of you.  I know how terribly hard this is.

Hugs and prayers ❤

 

Thank you

 

Zman are you tapering?

[[...]]

Ladyden, Enzolt, Fruitypop, Zman and anyone else on here struggling badly today I am so very sorry.  Praying for all of you.  I know how terribly hard this is.

Hugs and prayers ❤

 

Thank you

 

Zman are you tapering?

 

I’m holding at about 8.5mg Valium, down from 2mg Xanax… switched over in December probably a little too fast to a non-equivalent dose of V

[[Th...]]

 

Zman as I lay here on my left side I feel for sure that my ribs will crush. Why is the pain so severe? It feels like my body weighs 1000. Lbs so it would in deed crush my bones. Ugh

 

Fruitypop your ribs hurt when you lay too? I thought mine only hurt because I was so thin and boney.

[[La...]]

Ladyden, Enzolt, Fruitypop, Zman and anyone else on here struggling badly today I am so very sorry.  Praying for all of you.  I know how terribly hard this is.

Hugs and prayers ❤

Very sweet Dianne! I wish you well too. Thank you for your kindness. I’m here for you too my dear. 💗🌹

[[La...]]

 

Zman as I lay here on my left side I feel for sure that my ribs will crush. Why is the pain so severe? It feels like my body weighs 1000. Lbs so it would in deed crush my bones. Ugh

 

Fruitypop your ribs hurt when you lay too? I thought mine only hurt because I was so thin and boney.

Stitch mine hurt too but not as often or as bad as they used to. Just wanted to let you know.

[[Fr...]]

 

Zman as I lay here on my left side I feel for sure that my ribs will crush. Why is the pain so severe? It feels like my body weighs 1000. Lbs so it would in deed crush my bones. Ugh

 

Fruitypop your ribs hurt when you lay too? I thought mine only hurt because I was so thin and boney.

 

Yes they do. I have such a heaviness to my body it’s really scary I feel like cement is smashing me down and I can’t get up which just makes my bones feel like they are being crushed. It is very painful and takes my breathe away.

[[Th...]]

 

Zman as I lay here on my left side I feel for sure that my ribs will crush. Why is the pain so severe? It feels like my body weighs 1000. Lbs so it would in deed crush my bones. Ugh

 

Fruitypop your ribs hurt when you lay too? I thought mine only hurt because I was so thin and boney.

 

Yes they do. I have such a heaviness to my body it’s really scary I feel like cement is smashing me down and I can’t get up which just makes my bones feel like they are being crushed. It is very painful and takes my breathe away.

Yes, I do hate it.

[[Fr...]]

What do you do when you have tried all the tricks. I am just coming out of my skin but also so heavy I can’t get up it’s a horrible feeling. I have tried the ice a snack weighted blanket distraction is overstimulating to me lately because I am dizzy so scrolling reading and typing is rough. The tv feels to big of a screen coming at me. I tried a heat pad it soothed for a while.

 

I didn’t sleep last night so it just makes the day so hard. Finding it hard to stay in the moment and not catastrophize how long this is going to take.

 

I spoke to my nutritionist about my blood sugar response and he said you need to take a walk after meal. If only they knew how impossible that was. I am just frustrated. My heart was racing for hours and hours last night with sweating burning pain and I just don’t know how long I can keep doing this. I have endured so much.

 

Just need a little support right now. I am scared! I feel so dumb living in my parents house at 45 saying I am scared.

[[Di...]]

What do you do when you have tried all the tricks. I am just coming out of my skin but also so heavy I can’t get up it’s a horrible feeling. I have tried the ice a snack weighted blanket distraction is overstimulating to me lately because I am dizzy so scrolling reading and typing is rough. The tv feels to big of a screen coming at me. I tried a heat pad it soothed for a while.

 

I didn’t sleep last night so it just makes the day so hard. Finding it hard to stay in the moment and not catastrophize how long this is going to take.

 

I spoke to my nutritionist about my blood sugar response and he said you need to take a walk after meal. If only they knew how impossible that was. I am just frustrated. My heart was racing for hours and hours last night with sweating burning pain and I just don’t know how long I can keep doing this. I have endured so much.

 

Just need a little support right now. I am scared! I feel so dumb living in my parents house at 45 saying I am scared.

 

Hi Fruitypop,

I am so sorry you are having such a terrible day my heart hurts for you.  Don't feel bad about living with your parents it's a blessing that you have a safe place.  I wish there was something that could help you to feel better.  Sometimes as hard as it is we just have to wait it out.  Today is not a good day for me either  I aggravated my CNS with several different smells yesterday from cleaning products to cooking smells.  There is just no excuse that we have to endure this suffering from a stupid med.  A dear friend told me it will get better we just don't know when.  It sure would be nice if we had a timeline.  Please take care I am so sorry for your suffering.

Hugs❤😇❤

[[Th...]]

What do you do when you have tried all the tricks. I am just coming out of my skin but also so heavy I can’t get up it’s a horrible feeling. I have tried the ice a snack weighted blanket distraction is overstimulating to me lately because I am dizzy so scrolling reading and typing is rough. The tv feels to big of a screen coming at me. I tried a heat pad it soothed for a while.

 

I didn’t sleep last night so it just makes the day so hard. Finding it hard to stay in the moment and not catastrophize how long this is going to take.

 

I spoke to my nutritionist about my blood sugar response and he said you need to take a walk after meal. If only they knew how impossible that was. I am just frustrated. My heart was racing for hours and hours last night with sweating burning pain and I just don’t know how long I can keep doing this. I have endured so much.

 

Just need a little support right now. I am scared! I feel so dumb living in my parents house at 45 saying I am scared.

Fruitypop I have or had many of those symptoms. I am so sorry you are goin through this. I am also living at my parents. I wish I could be independent. I would be happy just to be able to eat by myself and put on weight. You are not dumb for it, we are managing the best we can. Our job is surviving. You are doing great.

Hugs.

[[La...]]

Fruity, it’s ok to feel how you are feeling. Under the circumstances, you’re doing better than others in your shoes. So please be so proud of yourself. Firstly, I’d like to say that it’s ok that you live with your parents at 45. You had to do what you needed to do for now. It is temporary sweetie. It is a blessing that you had their house to go to. It’s God’s way of being who he is…an Almighty Provider ( El Shaddai). I’m not sure if you’re a spiritual person but oftentimes in the midst of our suffering we tend to forget that he’s with us. We are not waiting on him as we thought…he’s waiting on us to turn to him in any situation whether we see it as a good or bad situation. Right now, you are in turmoil, your brain is highly sensitive to everything and you are at the lower end of tapering. Someone asked me how am I always so positive through my entire recovery so far. My answer is simple, it is keeping my focus on God and refusing to give my symptoms everything. What I mean by that is this….these medications take soooooooo much from us ( as you know) but there are a few things that it can’t take away. Your right to live, your right to heal, your acceptance of the process and your ability to fight. Yes, it gets sooooo bad sometimes especially in the early days as you’re in right now. So bad that we question how we’re going to make it one hour to the next. But I found that looking at that hour gave me some peace that I CAN make it to another hour and another. You wake up the next morning and you are alive! Once, I accepted that I’ll have horrible debilitating symptoms for awhile then I expected those symptoms and distracted from those symptoms as best as I could. The days rolled by slowly lifting them. This doesn’t happen overnight unfortunately. It’s going to take you some time. In the meanwhile, we are stuck with feeling like we don’t know what to do. So we have to just keep trying to soothe ourselves as best as we can. Sometimes I had to try a combination of things. What works for me might now work for you. But the weighted blanket is a good coping tool. Perhaps you can try using it along with some soothing music on a low volume that would force you to focus hard to hear it. I found that making my brain do a slightly challenging task served as a relief of my symptoms. If it’s very busy trying to hear music then that becomes it’s main focus. This is why meditation works well for most people. And why it’s highly recommended to use distractions. For example, if you’re outside in the hot summer weather your brain very focused on hot hot it is until you perhaps trip and fall scrapping your knee. Immediately your brain will direct the focus to the knee because it has taken precedence over the heat. Your brain became distracted from how hot it is so much so that it’s no longer a big deal. So, perhaps you can try a few things that are better distractions. When you find some that helps a bit, keep doing it. I hope something I said helps you.

Also you can listen to audiobooks instead of looking at a screen to read. Many BBs have trouble watching tv or looking at screens. I’ve heard from a friend that blue light blocking glasses solve that issue.

Big hugs to you. 🤗

[[Di...]]

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

 

😇😇😇

[[sa...]]

What do you do when you have tried all the tricks. I am just coming out of my skin but also so heavy I can’t get up it’s a horrible feeling. I have tried the ice a snack weighted blanket distraction is overstimulating to me lately because I am dizzy so scrolling reading and typing is rough. The tv feels to big of a screen coming at me. I tried a heat pad it soothed for a while.

 

I didn’t sleep last night so it just makes the day so hard. Finding it hard to stay in the moment and not catastrophize how long this is going to take.

 

I spoke to my nutritionist about my blood sugar response and he said you need to take a walk after meal. If only they knew how impossible that was. I am just frustrated. My heart was racing for hours and hours last night with sweating burning pain and I just don’t know how long I can keep doing this. I have endured so much.

 

Just need a little support right now. I am scared! I feel so dumb living in my parents house at 45 saying I am scared.

 

I am so sorry Fruitypop!  I can truly relate to the kind of horrible day you were having.  So many sleepless nights full of hot, sweaty, panic.  So much anxiety, but not energy to get up and walk it off.  It was so stinking hard.  I agree with the nutritionist on walking after a meal, that helps me now.  But there was a time it would have been impossible for me too. 

 

We're nearly the same age - I'm 46.  I know it feels awful having to live with your parents.  But it's also a blessing that they are there for you.  It's incredibly scary to be so sick and have no options for care.  But I totally get your feeling bad about it.  We all want so much just to be able to take care of ourselves in order not to be a burden on anyone.  I know this will pass, but I'm sure it feels like it's taking forever.  It WILL pass.  Just keep saying that to yourself until it feels like you can believe it.