~~The Bedridden Club~~

zman,  don't talk to me like I'm stupid because I'm not.  I know what bedridden means.  Please leave me alone with your arguing and passive aggressive behavior towards me.  I never singled you out and said anything derogatory towards you ever.

 

I’m sorry that my words seem that way to you, I was actually trying to just kindly communicate with you and even gave my condolences for the loss of your pet. I assure you, I wasn’t trying to argue or anything like you are interpreting it as. It seems like you are on this thread (and other threads I am noticing) looking for confrontations. Nobody was singling you out, I was just responding… ya know, like people do on forums. I have no “anger” toward you like you said… Sometimes in text it’s hard to covey the emotion behind statements and I think we are just misunderstanding each other, honestly.

 

Sorry, but I refuse to engage in situations of this sort. I won’t be responding anymore to you for the sake of retaining the integrity of this particular much-needed support group.

 

Pamster, this will be my last response to her, as I feel like I’m being provoked for no reason, and that’s not what this group is about. I’m here to make friends, (buddies) not inadvertently make anyone angry. The LAST thing I want is to argue with anyone, I barely have any fight left in me as it is

 

Peace and love and healing to all… Shew this day has been a doozy! lol

Lord, help us all, Amen

Good morning everyone. Zman I’m doing fine. I can’t complain because somebody somewhere is worse than me. I hope you’re feeling better or at least more stable? What did you do this weekend? I cooked a bit and watched movies. I also did some walking in my windows. Not much yesterday because it rained all day. But I did walk my apartment breezeway to keep my momentum going. Every little bit adds up.

I read the posts about doctors….honestly IMO it’s wise not to get into tensed exchanging between others on here. All of us have enough stress as it is. I agree that everyone has a right to their opinion but facts are facts. Furthermore this is a bedridden thread as you said, Zman. I believe that the focus should stay on that…as you said. Being bedridden against our will is so very tough. I’m starting to get “urges” to want to go places but I know I can’t right now. It’s too soon. But the urges are a good sign. I did notice that different symptoms are the culprits of making people bedridden. Mine is boatiness and pulling sensation. I’m so happy to report that both of them are much better especially the pulling sensation. My boatiness seems to have a mind of its own. I’m like drunk Captain Jack Sparrow atleast once a day. The other times I’m just on a boat….sometimes the rocking is intense and sometimes barely there. So atleast my brain is working on it. It shows that it’s getting it right off and on. That’s what I’m extremely happy to see! We just have to keep waiting this out. Let time prove to us that he’s our best friend in healing us. As we wait, we’ve got to distract around the clock.  I hope you’ve gathered some great coping skills.

 

Dianne, Sage, Stitch, Fox how are you doing? How was your weekends?

 

Ladyden, I am happy to hear that some of your symptoms have eased up a bit. Praise the Lord for whatever breaks we can get during this! My weekend was much more of the same struggle I’ve had for the past week, intense muscle pain, twitching, bones aching, and trembling. I’m still hoping I get another window soon. God bless and keep on keeping on. Thank you for the encouragement as well, it is always much appreciated and I’m very grateful.

Hello everyone,

Ladyden it's so good to hear that you are seeing improvements that is so awesome.  You always are so positive!

 

I felt a little better Friday and Saturday then I did a stupid thing and ate Mexican takeout.  I'm sure it had msg in it and I am paying the price...live and learn the hard way.

 

Zman I hope you get another window very soon they always give us hope.

 

Everyone else I hope you have had a good day today.

 

Hugs❤

 

 

 

Hello everyone,

Ladyden it's so good to hear that you are seeing improvements that is so awesome.  You always are so positive!

 

I felt a little better Friday and Saturday then I did a stupid thing and ate Mexican takeout.  I'm sure it had msg in it and I am paying the price...live and learn the hard way.

 

Zman I hope you get another window very soon they always give us hope.

 

Everyone else I hope you have had a good day today.

 

Hugs❤

 

Thank you DD, sorry to hear about your recent food sensitivity. That’s one of the things I’m trying to figure out is what and when to eat, because for me it has been so touch & go. I hope you feel better very soon. God bless you, and hang in there.

Hey Zman,

Thank you.  Bless your heart I know how overwhelming trying to figure everything out is.  Who would have thought eating would be so tough.  I've lost close to 50 pounds since this nightmare started I pray I don't lose anymore.

 

Hugs and prayers 😇

I'm certainly done posting on this thread because I'm not bedridden and never was. I originally posted on here one time because I wanted to say that I wish I could sleep all day long, but I can't, because I live alone and have alot of responsibilities to take care of every day.  I just want to say that I love docs!  And that's my last word.

 

zman,  that's not what I was saying at all; I just made a harmless statement.  Stop trying to debate with me and leave me alone with your passive aggressive behavior towards me.  I never tried to argue with you at all, and you are always on my case and I'm tired of your anger towards me.     

 

I wasn't going to comment Becksblue because you said this was your last word but now that you've come back for another last word I'm going to.  Your statement was not harmless, it was incredibly demeaning and ill informed.  No, you weren't directing it to any particular member but your ignorance of the devastation that being bedridden does to the lives of these people is shocking.  I hope you've truly said your last word on this thread because it's obvious you don't understand the nightmare these good people are living through.

 

Pamster

 

Pamster thank you for stepping in. I am truly living my worst nightmare.

Thanks for trying to make me feel bad about myself.  I won't because I meant no harm to anyone with any of my statements.  No one is going to try to ruin my self esteem.  I'm a good person and I didn't deserve this punishment.  No one on this forum makes totally appropriate statements all the time and I shouldn't be treated so severely for what I said.  Actually, I didn't make that statement about sleeping all day on this thread, but on another one.  I was mistaken and no one will find that comment on this thread.  I get confused because of my brain damage.

FruityPop, how are you feeling today? Any improvements at all?

You are in my thoughts and prayers. I can’t help but worry about us all.

Even though I’m in terrible shape, I’m trying to retain my empathy for everyone who is suffering and

not just focus on myself and my own set of circumstances. I really hope you feel better soon.

 

Z

Yes I get that. I really don’t go on Facebook at all but sometimes it’s helpful for me to go into one of the groups and help someone else that is just starting out. I tried to increase my rate to 4% and it didn’t go well. I have been hit with horrible vertigo for a few days that lasted hours and was so terrifying. Thanks goodness it didn’t come back just a lot of dizziness and very low blood pressure the first half of the fat that makes it hard to even stand up to go to the bathroom without feeling like I will black out. I have a pee bucket next to my bed now. I have been trying to increase the salt to help with the low blood pressure but honestly more salt makes me feel worse. Things aren’t going good and I just feel stuck. I am grateful for my parents help but I really need to be back home but cant do that until I can take care of myself. I am having a hard time finding ways to distract because I have such a heaviness that it is even hard to lift my head and arms and on bad days being on the phone or even talking makes the heaviness and pain more severe. I feel like I weigh 1000lbs and can’t lift my body it’s like cement is laying on me which is a very strange feeling. I had a cortisol test done and it is high the first half of the day which is surprising because I can’t really get up so I thought it was low but I guess other things are going on besides cortisol. It just feels like a whole nervous system shut down.

Hello everyone,

Ladyden it's so good to hear that you are seeing improvements that is so awesome.  You always are so positive!

 

I felt a little better Friday and Saturday then I did a stupid thing and ate Mexican takeout.  I'm sure it had msg in it and I am paying the price...live and learn the hard way.

 

Zman I hope you get another window very soon they always give us hope.

 

Everyone else I hope you have had a good day today.

 

Hugs❤

Girl OMG it’s loaded with it! And I understand because I love Mexican food too. But I know to stay away although I’m tempted. So I make my own tacos at home. Not the same but they’ll do until I can eat them from a Mexican restaurant. I tried pizza last night. But only ate one slice. So far so good. I was extra careful with the ingredients. It’s from one of those build your own pizza places. I ordered grilled chicken, fresh mozzarella, bell peppers on gluten free thin crust. It was so tasty. I was tempted to eat more but just in case it turned out to badly affect me, I decided to eat just one small slice. I really enjoyed it. I was still hungry so I ate a slice of meatloaf and roasted potatoes I cooked the day before.

Glad to hear from you sweetie. No more Mexican restaurants tacos for awhile, right? But you know what? That’s the only way we’ll know unless we try it. I started a recipe swap meet thread on BBs if you want to check it out. I did that because it’s hard to eat delicious meals in this recovery that have no MSG or preservatives. Please check it out. Try some of the meals and let me know how you like them. And feel free to add a recipe. Hope you have a great day. Love and hugs.

Good morning everyone. Zman I’m doing fine. I can’t complain because somebody somewhere is worse than me. I hope you’re feeling better or at least more stable? What did you do this weekend? I cooked a bit and watched movies. I also did some walking in my windows. Not much yesterday because it rained all day. But I did walk my apartment breezeway to keep my momentum going. Every little bit adds up.

I read the posts about doctors….honestly IMO it’s wise not to get into tensed exchanging between others on here. All of us have enough stress as it is. I agree that everyone has a right to their opinion but facts are facts. Furthermore this is a bedridden thread as you said, Zman. I believe that the focus should stay on that…as you said. Being bedridden against our will is so very tough. I’m starting to get “urges” to want to go places but I know I can’t right now. It’s too soon. But the urges are a good sign. I did notice that different symptoms are the culprits of making people bedridden. Mine is boatiness and pulling sensation. I’m so happy to report that both of them are much better especially the pulling sensation. My boatiness seems to have a mind of its own. I’m like drunk Captain Jack Sparrow atleast once a day. The other times I’m just on a boat….sometimes the rocking is intense and sometimes barely there. So atleast my brain is working on it. It shows that it’s getting it right off and on. That’s what I’m extremely happy to see! We just have to keep waiting this out. Let time prove to us that he’s our best friend in healing us. As we wait, we’ve got to distract around the clock.  I hope you’ve gathered some great coping skills.

 

Dianne, Sage, Stitch, Fox how are you doing? How was your weekends?

 

Ladyden, I am happy to hear that some of your symptoms have eased up a bit. Praise the Lord for whatever breaks we can get during this! My weekend was much more of the same struggle I’ve had for the past week, intense muscle pain, twitching, bones aching, and trembling. I’m still hoping I get another window soon. God bless and keep on keeping on. Thank you for the encouragement as well, it is always much appreciated and I’m very grateful.

I hope you get another window too. I’m also grateful to have your support as well. I keep in mind that this is a crazy wild roller coaster ride. How we feel today will not necessarily be how we feel tomorrow. That’s the wax and wane. Waves and windows. Within one day, my friend, I have waves and windows at varying levels. My morning dread is better than last month. But still rough half the week. I’m so glad that I can walk around now without my walker. It’s collecting dust! Thank God! I was too boaty to get in the tub yesterday evening so I did a sponge bath instead. I definitely didn’t want to because it took me sooooooo long to bathe inside a tub like a normal person. But in this recovery sometimes we have to temporarily go back to our older ways of doing things. I had to remind myself that is ok. It doesn’t mean I haven’t healed…..just means I’m having a stronger wave. Those benzo lies are so sneaky! Watch out, my friend, for those sneaky thoughts of doom and gloom. I try to confront mine immediately with facts! Enjoy your day. Try to get out of bed a few times today.  Big hugs

Yes I get that. I really don’t go on Facebook at all but sometimes it’s helpful for me to go into one of the groups and help someone else that is just starting out. I tried to increase my rate to 4% and it didn’t go well. I have been hit with horrible vertigo for a few days that lasted hours and was so terrifying. Thanks goodness it didn’t come back just a lot of dizziness and very low blood pressure the first half of the fat that makes it hard to even stand up to go to the bathroom without feeling like I will black out. I have a pee bucket next to my bed now. I have been trying to increase the salt to help with the low blood pressure but honestly more salt makes me feel worse. Things aren’t going good and I just feel stuck. I am grateful for my parents help but I really need to be back home but cant do that until I can take care of myself. I am having a hard time finding ways to distract because I have such a heaviness that it is even hard to lift my head and arms and on bad days being on the phone or even talking makes the heaviness and pain more severe. I feel like I weigh 1000lbs and can’t lift my body it’s like cement is laying on me which is a very strange feeling. I had a cortisol test done and it is high the first half of the day which is surprising because I can’t really get up so I thought it was low but I guess other things are going on besides cortisol. It just feels like a whole nervous system shut down.

I’m sorry that you are feeling this way. I know you were addressing Zman so I hope you don’t mind me replying. Those symptoms you describe are terrible. I also had a toilet by my bed for a while. It’s ok. We have to do what we have to do. But now I can walk to the bathroom and you will too. As you taper, symptoms will show up unfortunately. There’s just no way around it. For now until you’re better, continue to do all you can to get through the day. Under the circumstances Fruity, I think you’re brave and doing a good job. I’m sure you miss being home. You’ll get back there when it’s time. High morning cortisol is also not surprising to me. Nearly everyone on here have crazy vitamins and hormone levels. Very common. These symptoms suck! I pray yours improve very shortly. I’m thinking of you. Big hugs sweetie 🤗

Yes I get that. I really don’t go on Facebook at all but sometimes it’s helpful for me to go into one of the groups and help someone else that is just starting out. I tried to increase my rate to 4% and it didn’t go well. I have been hit with horrible vertigo for a few days that lasted hours and was so terrifying. Thanks goodness it didn’t come back just a lot of dizziness and very low blood pressure the first half of the fat that makes it hard to even stand up to go to the bathroom without feeling like I will black out. I have a pee bucket next to my bed now. I have been trying to increase the salt to help with the low blood pressure but honestly more salt makes me feel worse. Things aren’t going good and I just feel stuck. I am grateful for my parents help but I really need to be back home but cant do that until I can take care of myself. I am having a hard time finding ways to distract because I have such a heaviness that it is even hard to lift my head and arms and on bad days being on the phone or even talking makes the heaviness and pain more severe. I feel like I weigh 1000lbs and can’t lift my body it’s like cement is laying on me which is a very strange feeling. I had a cortisol test done and it is high the first half of the day which is surprising because I can’t really get up so I thought it was low but I guess other things are going on besides cortisol. It just feels like a whole nervous system shut down.

 

A lot of what you describe is exactly the way I am feeling, combined with muscle pain all over like the muscles are burning and tight non stop. This amount of pain is new to me… its only started in the oast ten days or so and its gotten increasingly worse. I felt like I was maybe turning a corner and lif to ing the small weights while sitting in the edge of the bed, eating 3 times a day, ect but the pain has ramped up to a level which is just so bad that i can barely move. For me right now it’s either, lay on left side and hurt on those rib muscles really bad, or lay on right side and my shoulder, back, and rib muscles start to pull and burn, plus as you described, the heaviness. I haven’t really been able to get out of bed at all since the 15th except to sot on the portable toilet which is just across from my bed. Even when I stand up to do that it feels like my bones in my legs are gonna crumble and I might fall. The pain and lonliness of being in bed all this time is taking its toll. I’m starting to think the people around me hate me and hope I will die soon. My wife cries and says she loves me ect but my brain is interpreting it wrong I think… She can go from that, to not even responding when I try to talk to her. I feel so powerless. Ladyden, I am going to try to get out of bed a few times today, but the pain is so horrible and so much that I know its going to hurt me worse. I guess I have to at least try something regardless. My stomach bloat came back last night with a vengeance. I hope I can eat today, I’ve been eating pretty regularly, but still losing weight and muscle mass… I would say a conservative guess would be I have lost about 100 pounds now and no exercise or reason for it. Even eating normal isnt stopping it, it feels like. Despite this weight loss, I still feel like I have a giant boulder pushing down on my back and all my extremities, even while laying flat.

I'm certainly done posting on this thread because I'm not bedridden and never was. I originally posted on here one time because I wanted to say that I wish I could sleep all day long, but I can't, because I live alone and have alot of responsibilities to take care of every day.  I just want to say that I love docs!  And that's my last word.

 

zman,  that's not what I was saying at all; I just made a harmless statement.  Stop trying to debate with me and leave me alone with your passive aggressive behavior towards me.  I never tried to argue with you at all, and you are always on my case and I'm tired of your anger towards me.     

 

I wasn't going to comment Becksblue because you said this was your last word but now that you've come back for another last word I'm going to.  Your statement was not harmless, it was incredibly demeaning and ill informed.  No, you weren't directing it to any particular member but your ignorance of the devastation that being bedridden does to the lives of these people is shocking.  I hope you've truly said your last word on this thread because it's obvious you don't understand the nightmare these good people are living through.

 

Pamster

 

Pamster thank you for stepping in. I am truly living my worst nightmare.

Yes thanks Pam. I’ve been living my worst nightmare too!  But as it’s often said in this community….it does get better.

Zman-

I am so sad for you but know exactly how you feel. I to have the crushing excruciating pain. I wonder how long I can endure this because it is all to much and very lonely. I notice just reading and scrolling on the phone is creating a stress and bringing in the heaviness but if I don’t do that I don’t know what I will do to occupy the mind. My head and arms feel so heavy so doing anything else in bed to distract doesn’t seem possible. Yesterday was a really hard day. When it starts off with very low blood lressysnd almost passing out just sitting in the port a potty it’s all down hill. I did a salt foot soak and it yanked me so much pain and heaviness and made me be in a more stressed state I just cried and panic all day. My mind goes wild with tapering slow or pushing forward faster. I know my mom is getting wary as well and goes between being very understanding and then not wanting to listen at all. I know it’s very hard on our caregivers to watch. I am so thankful for her. I have been awake since 4 am to my heart racing for hours so am going to try to just accept this day and lay low.

LadyDen I always appreciate any input you have. Thank you!

Hope everyone else is hanging in there. Thank you for supporting me in this difficult time.

Yesterday i was sitting on a stool and after a minute I started to feel so dizzy and nauseous that I had to go lie down in bed, today I feel extremely fatigued and sick.. like with a high fever, I’m so tired of all of this

Enzoit, yes I can relate very much. This journey wears us down and out. At any given time, it rears its ugly waves disrupting our windows and trying its hardest to crash our confidence in healing. But I say….don’t let it stick in your head that you won’t heal. There’s too much evidence that we do. When we’re in a wave, it’s so very difficult to believe that it’s part of healing. It defies logic that something gets worse in order to get better. Any other illness besides cancer doesn’t work that way. So yes I understand your frustration. Yesterday was decent for me but so far today sucks! So we just continue to get through the tough days waiting for the better ones to come. I hope you have some good supporters that you can call or would come visit you. Sometimes something as simple as someone being around can help. Feel better soon. 🤗

Thank you very much for your reply.. I just don’t understand how sitting on a stool can wipe my energy out so much that I’m in bed for the last 24 hours.. my dizziness was getting better, but as soon at the equilibrium was more challenging it got way worse

Thank you very much for your reply.. I just don’t understand how sitting on a stool can wipe my energy out so much that I’m in bed for the last 24 hours.. my dizziness was getting better, but as soon at the equilibrium was more challenging it got way worse

 

I am so sorry Enzoit I can relate to this so much. The morning bowel movements do me in for the day. In bed heaviness and severe pain. Just trying to breathe hang in there.

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

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

Enzoit It will be better nothing is linear in this so try and breathe stay as calm as you can and distract and it will ebb and flow back to better days like before.

 

The thing that scares me is I have done a long slow taper and everyone I identify with is a cold turkey. I can’t understand why I am as bad as those that have cold turkeyed.

 

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

 

 

The thing that scares me is I have done a long slow taper and everyone I identify with is a cold turkey. I can’t understand why I am as bad as those that have cold turkeyed.

 

 

 

That’s EXACTLY how I feel. My stuff got switched around from Valium for years to Xanax for four months and then back to Valium, which theoretically SHOULD stave off withdrawal since I never ever took it often as I am having to now… but instead my body is reacting like its rejecting it totally and going on with the c/t type symptoms. I went c/t off Valium one time waaay back in 2009 and I lasted about 6 months before I started again due to not even realizing the weird side effects I was having was withdrawal. My “wonderful doctor” never even told me it was dangerous to just stop c/t back then. Now she acts concerned but also gives me the impression that she has no answers for how too help me in this situation or that it could be because she switched me to Xanax for those four months. Keep in mind, this whole time during the switch from Valium to Xanax, they had me on a beta blocker which is also a CNS depressant and my cardio dr was changing around the doses of it and made me fo c/t off of it. I think my CNS is just fried now and its so confusing. My cardio dr dropped me when I asked why he woukd want me to go c/t off a beta blocker when I had been on it for ten months and it was causing worse panic attacks and depression. Hopefully this all straightens out. I get so scared.

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😇

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