~~The Bedridden Club~~

[[lo...]]

Hello bedridden buddies

 

I have just found this thread and wonder why no one has posted for a while.  :'(

 

Has everyone got better? I don't think so.   

 

I have been in bed for 11 months now. Many of my symptoms have improved a lot or disappeared altogether. I have been benzo free for 17 months but had few symptoms for 6 months then became extremely ill. I am in bed because any physical effort makes me feel very ill. I get up about every hour but only for essentials.  I feel reasonably well in my bed apart from my fuzzy head. My gingers are numb just now so typing is difficult. 

 

I live alone but am not lonely or depressed, thankfully. I have visitors once a week usually for a few hours.

I was on nitrazepam for 40 years for myoclonic epilepsy  and was depressed all that time presumably because of the nitrazepam. I no longer have epilepsy.

 

I live in Aberdeen in the north east of Scotland.

 

I am now retired so no worries about work or income.

 

All in all, I am doing ok but being in bed is a pain.

 

Look forward to chatting to other bedridden buddies. 

 

LF

 

 

 

 

My cognitive functioning is not good so conversation gets tiring.

 

[[re...]]

Sorry to read about everyone's suffering.

 

I was bedridden for months in my taper and for a very long time after I finally ct when I couldnt stomach tapering anymore.

Some of us get hit hard and bedrest is all we can do. I recovered over time and was able to garden (dig deep holes, cart around heavy bags of compost etc) and have energy to clean etc.  I am in a wave again and spend a lot of hours on the couch. But I know this will pass in time and I will be more functional.

 

Keep putting the days together. It will get better for all of us. Hopefully soon.

[[pr...]]

hi LF and RFB,

 

nice to see you both. sorry to see you on this thread though. i would say that i am not bed ridden anymore although i still need a ton of rest. my routine is that i go to bed around 2am after i watch The Office. i sleep now about 3-4 hours which is good because before i wasn't sleeping at all for many months. something like 16 months i didn't really sleep. i am now 24 months.

 

then i get up around 1:30pm to eat and go for a very short walk and make some phone calls. but then i need to rest again around 4pm until about 7pm. then i get up for the evening but only really able to come on here and sit in my chair and watch TV.

 

it's still very difficult for me to do anything or walk around since the squeezing neuropathy around my knees, legs and feet is still so bad. actually i guess i would say i have whole body neuropathy so it's difficult for me to manuver around and i can only sit for long periods of time or rest on my couch for long periods of time. but all in all i am on the couch a lot needing to rest. lot's of rest i need still -- lot's of it.

[[lo...]]

Hello RFB & PD

 

RFB - Digging deep holes, wow. Could not have done that before withdrawal!!  Not fit enough.   not sure if I could ever have done it.  What a weakling!! 

 

Sorry to hear you are back on the couch but hope it won't be for too long.. 

 

PD - I am sorry you are still suffering so much. I could lie on the couch in my sitting room but am comfier in bed.  sitting up is ok if my head is propped up, otherwise I would get tired much more quickly. My bedroom is big and airy so it is a nice room to be in. I thought it would be a nice room for my dad who died in 2009, age 97 so bought this apartment for that reason.  He never needed it and I did not imagine for one minute that it would be me who would be bedridden and housebound. He never had a day's illness except for "the flu before the War"!!! Died of old age.

 

I do hope we will all be much better sooner rather than later.

 

LF 

 

 

[Guest [Ti...]]

I am in bed most of the time unfortunately.... I have POTS so I can't get out of bed very much otherwise my s/x ramp up like crazy.

[[pr...]]

PD - I am sorry you are still suffering so much. I could lie on the couch in my sitting room but am comfier in bed.  sitting up is ok if my head is propped up, otherwise I would get tired much more quickly. My bedroom is big and airy so it is a nice room to be in. I thought it would be a nice room for my dad who died in 2009, age 97 so bought this apartment for that reason.  He never needed it and I did not imagine for one minute that it would be me who would be bedridden and housebound. He never had a day's illness except for "the flu before the War"!!! Died of old age.

 

I do hope we will all be much better sooner rather than later.

 

LF 

 

LF,

 

that's nice that your bedroom is big and airy.  also nice that your dad had a good life and died of old age. i can only hope that is how my father will go but i guess i don't have any control over that.

 

i sure am getting really sick of these symptoms. i'm in a stage where it feels like i won't ever heal.

 

Time,

 

sorry you're in bed most of the time and that your s/x are ramped up. mine seem to me ramped up a certain times of the day but getting just a little reprieve every once in awhile so i'll take what i can get.

 

pretty

[[lo...]]

I am in bed most of the time unfortunately.... I have POTS so I can't get out of bed very much otherwise my s/x ramp up like crazy.

 

Hello Time

 

I am so sorry to hear that you are so unwell. It is terrible what we have to go through just to get off these drugs.

 

Take care

 

LF

[[gr...]]

I wondered wy this thread had stopped also LF.

 

Ive been bedridden like you for 14 damn months now. Im so weak. Its also due to the severe depression i have Im sure.

 

I just feel like there are so many problems, i will never feel well again. I wake up so tired and tired all through the day and night.

I hate seeing people so sick, its just terrible.

[[lo...]]

Hi grooviejuice

 

I am sorry you are stuck in bed too.  You are more sick than I am. I sure hope things will turn around for you.

 

Depression and fatigue are just awful. I have lived with those all my life, probably because of taking nitrazepam for 40 years. Thankfully I was able to work but each day was a struggle to function. I no longer have depression. Not sure about fatigue. I just feel so ill when I try to get up and do things. I feel it in my brain rather than my body. However, I do recover much quicker now which is a good sign. I live on my own so there are some things I have to do. If I could not look after myself I would be devastated.

 

I hope you get some sleep tonight.  :sleepy:

 

LF

[[gr...]]

TY LF.

 

I was never this bad...I could always function, shave shower go places and do things. That all ended 14 months ago and im not sure why, like i said i can only assume i went into tolerance wd.

 

I cant sleep worth a damn. I tried to stay up a late last night and get tired,,,so 3am i went to bed and 5:30 i woke up.

Then i can never sleep anymore, not a wink during the day as i lay in bed just so tired.

 

Id cut an arm off to feel good again.

[[Ch...]]

I thought I'd come and join you in the bedridden club. I've been mostly bedbound for almost 6 months. If I'm not in bed I'm on the couch. The previous 6 months, when I was severely messed up by meds, I was in bed some of the time too.

 

I've had severe akathisia for a year, brought on by citalopram and kept going with other toxic drugs. During the time I was on the drugs, I was either walking non stop or cowering under the duvet. Other times, I would force myself to go out or socialise during the day and try my best to hide my symptoms and terror, all the while feeling all the symptoms and wanting to scream and run.

 

Since getting off the meds in march, and doing a couple of dodgy reinstatement efforts, I've gone into acute withdrawal which makes almost impossible to go out. On top of the existing akathisia, mental torture, feeling like my arms and legs were in different parts of the room and cognitive impairment that I got on the drugs, I then got major withdrawals including constant brain zaps every few seconds, dizziness, double vision, blurred vision, problems focusing my eyes, eye pain, problems moving my eyes, severe fatigue, major crying spells and general inability to function.

 

I mostly stay in bed despite the akathisia because when I walk, I'm so aware of my eyes being off, of the dizziness and of the inner agitation. It also takes everything in me to have the courage to bath and get dressed. So I lie in bed and move my legs around constantly. The mental torment is the very worst thing. I've had it since going on citalopram and it's never abated. Round the clock SI for no reason, terror for no reason and generally feeling like I'm in one ongoing bad drug trip. I don't do any housework. Occasionally, I do a little but it's torture with the agitation, inner shaking, dizziness, doom and terror.

 

I have Friends and American comedies on the TV all day. I can't really watch tv properly but I have to have background noise and they have to be familiar shows or I go insane. I'm in my iPad all day, either on the withdrawal websites or playing games. Nothing distracts me at all, ever. I try hard to distract but it doesn't work. It only works for seconds at a time. The thing I like best is being asleep. If I nap in the day, I wake up in extreme terror and agitation so I try not to nap in the day.

 

I wish I could do something to address the mental symptoms but I can't take antidepressants.

 

Sometimes I make myself go out. I've even eaten in restaurants with extreme difficulty. I have to make myself sit still so no one will notice. I can wiggle my toes without being seen. I suppose the days I go out are sort of windows although I've never had a real window in a year.

 

I'm not sure how all this is going to just go away but I've been told it gets better in time. It has to because living in this constant torment indefinitely with no breaks ever is not an option.

 

Sorry this is so depressing. It's hard to find people who are like me. Most are functioning to some degree and get relief at times.

 

 

[[lo...]]

Hi Chaffinch

 

I don't think we have met before. If we have, you have probably forgotten too!!! 

 

I am so so sorry for your suffering.  Whenever I start to feel sorry for myself, like just now, I read about someone on BB who is suffering far more than I am and my self-pity evaporates.

 

Your level of functioning is a bit worse than mine but I don't have all the horrible symptoms you describe so my heart goes out to you.

Like you, I have the tv on in the background for company and partial distraction. Old, familiar programmes are the best, light hearted preferably. I spend most of my time on BB or other websites or doing simple word puzzles. Unable to do crosswords. 5-10 minutes of housework happens here and there.

 

I have just paid my credit card bill online and what a struggle. You would think I had climbed a mountain. I feel so low after such an ordeal. Thankfully I now recover more quickly.

 

I pray that you will find some respite very soon.  Hope we can chat and get to know each other better. Pop into my blog if you want.

 

Don't apologise. I would be very depressing in your shoes. There is a limit to the amount of suffering we humans can take.

 

Hugs

 

LF 

 

 

 

 

 

 

[Guest [Ti...]]

TY LF.

 

I was never this bad...I could always function, shave shower go places and do things. That all ended 14 months ago and im not sure why, like i said i can only assume i went into tolerance wd.

 

I cant sleep worth a damn. I tried to stay up a late last night and get tired,,,so 3am i went to bed and 5:30 i woke up.

Then i can never sleep anymore, not a wink during the day as i lay in bed just so tired.

 

Id cut an arm off to feel good again.

 

I said I would cut my arm off to feel normal again...they make good prosthetics and robotic arms.

[[gr...]]

TY LF.

 

I was never this bad...I could always function, shave shower go places and do things. That all ended 14 months ago and im not sure why, like i said i can only assume i went into tolerance wd.

 

I cant sleep worth a damn. I tried to stay up a late last night and get tired,,,so 3am i went to bed and 5:30 i woke up.

Then i can never sleep anymore, not a wink during the day as i lay in bed just so tired.

 

Id cut an arm off to feel good again.

 

I said I would cut my arm off to feel normal again...they make good prosthetics and robotic arms.

 

I seriously would become an amputee...This is just ridiculous living in bed all day every day depressed and lethargic!

Another Sat night goes by and here we are on BB...what a life.

[Guest [Ti...]]

TY LF.

 

I was never this bad...I could always function, shave shower go places and do things. That all ended 14 months ago and im not sure why, like i said i can only assume i went into tolerance wd.

 

I cant sleep worth a damn. I tried to stay up a late last night and get tired,,,so 3am i went to bed and 5:30 i woke up.

Then i can never sleep anymore, not a wink during the day as i lay in bed just so tired.

 

Id cut an arm off to feel good again.

 

I said I would cut my arm off to feel normal again...they make good prosthetics and robotic arms.

 

I seriously would become an amputee...This is just ridiculous living in bed all day every day depressed and lethargic!

Another Sat night goes by and here we are on BB...what a life.

 

It's Saturday?! I didn't even know....I don't know what day or time it is half the time...except when I am clock watching for doses which doesn't matter because they don't help anyways.

[[pr...]]

feeling like my arms and legs were in different parts of the room and cognitive impairment

 

Chaffinch,

 

i can empathize where you are with all your symptoms right now. when i was in acute i had the awareness that my legs were up on the ceiling in the kitchen while i was on my bed (couch) in the living room. it was just awful cognitive impairment that actually went on for some months during acute along with hallucinations every single night and an inability to visualize or have an image inside my mind that was my own. all images would pop up in my mind in an intrusive way and were very gruesome.

 

i also was waking up from naps with extreme terror and agitation. i still do sometimes but it's gotten a lot better. so these things will indeed change for you although it doesn't feel like it right now.

 

 

I'm not sure how all this is going to just go away but I've been told it gets better in time. It has to because living in this constant torment indefinitely with no breaks ever is not an option.

 

 

no it's not an option to live this way. it's hard to know that it will get better. i am still in a ton of torment myself but there are things that have gotten a lot better. i am still mostly couch (bed) bound during the day and at night i come on here for just a short while but then i sit in my chair and watch TV. i still can't move around that much because of the severe whole body neuropathy and especially around my legs and knee's. i have to believe that will go away too at some point.

 

keep holding on and coming on here to post.

prettydaisys

 

[[lo...]]

TY LF.

I was never this bad...I could always function, shave shower go places and do things. That all ended 14 months ago and im not sure why, like i said i can only assume i went into tolerance wd.

 

I cant sleep worth a damn. I tried to stay up a late last night and get tired,,,so 3am i went to bed and 5:30 i woke up.

Then i can never sleep anymore, not a wink during the day as i lay in bed just so tired.

 

Id cut an arm off to feel good again.

 

I said I would cut my arm off to feel normal again...they make good prosthetics and robotic arms.

 

I seriously would become an amputee...This is just ridiculous living in bed all day every day depressed and lethargic!

Another Sat night goes by and here we are on BB...what a life.

 

It's Saturday?! I didn't even know....I don't know what day or time it is half the time...except when I am clock watching for doses which doesn't matter because they don't help anyways.

 

I had forgotten this was Saturday too.    I can't believe it is nearly the end of summer. The seasons have kinda passed me by this past year. However, I am not suffering like many of you are and am truly grateful for that. I can see the light at the end of the tunnel.  I wish the light would come to all of you and end this suffering.

 

Love to all

 

LF 

[[gr...]]

Yup...its Sat. Yup...another summer gone. The only thing i look forward to anymore is going to damn bed. If i could sleep it would be even better.

[[lo...]]

Yup...its Sat. Yup...another summer gone. The only thing i look forward to anymore is going to damn bed. If i could sleep it would be even better.

 

I am in my bed all the time!!!!! 

 

I do sleep quite well overall but not at night.  :tickedoff:

 

Nothing is normal any more, including me. 

 

LF

 

[[ba...]]

LF,

 

You are a very sweet person.

 

Hugs!

 

[[lo...]]

http://images4.fanpop.com/image/photos/24000000/I-Love-Chocolates-c-D0-BD-CF-83-C2-A2-CF-83-E2-84-93-CE-B1-D1-82-D1-94-D1-95-24011415-485-348.jpg

 

 

Hi Babyrex

 

Thank you. 

 

Have a chocolate.    Not the big one!!! 

 

LF

 

 

 

 

[[lo...]]

http://www.kristiross.com/wp-content/uploads/2013/07/kitten4.jpg

 

Hi buddies

 

You are stronger than you think.

 

Hugs

 

LF 

 

(pinched from Courage Cafe) 

[[ba...]]

http://images4.fanpop.com/image/photos/24000000/I-Love-Chocolates-c-D0-BD-CF-83-C2-A2-CF-83-E2-84-93-CE-B1-D1-82-D1-94-D1-95-24011415-485-348.jpg

 

 

Hi Babyrex

 

Thank you. 

 

Have a chocolate.    Not the big one!!! 

 

LF

 

Thanks LF!

 

These are the kind of chocolates I need!  LOL!

 

[[Ch...]]

Greetings, fellow bedboundbuddies!

 

Sending hugs. My heart goes out to all of you on here.

 

Lookingforward and prettydaisy, thank u for your lovely messages. LF, I SO relate to the credit card bill paying. Things like that are SOO tough. It can take me days to pluck up courage to do stuff like that! Well done for doing it.

 

PD, oh my goodness, I felt for you when u described the feeling that your legs were on the kitchen ceiling while u were in the living room! I'm trying to coax my legs back from the wall as we speak!!! It's so good to hear that it gets better. The misplacement of limbs seems to be improving.

 

On a positive note, I went out yesterday and it went quite well! Going to post in my blog soon.

 

Take care all.

[[lo...]]

http://www.vexperienced.co.uk/wp-content/uploads/2013/11/puppet.jpg

 

How to prevent misplaced limbs!!!

 

Why are some of our images disappearing. This happened on another thread yesterday.  :tickedoff:

 

Maybe it is a new symptom. OMG!!! Or the technical team is playing mind games. 

 

 

By the time anyone reads this, they may well have reappeared and everyone will think I am crazy. 

 

Maybe they think that anyway. 

 

LF