~~The Bedridden Club~~

[[ho...]]

Hi Fruity. Sorry to hear you’re in this club too. Yes I’m still bedridden most of the day unfortunately. Here’s a typical day for me just to show you why I said “ most of the day”. I wake about 6:45 - 7am after sleeping about 6 hours. Most nights this isn’t solid straight through sleeping because I wake up once or twice usually around 3-4 am but I’m able to go back to sleep quickly. From 7am to about 1pm I have morning dread then waves at varying degrees. Around 1pm I began going into my evening window gradually. By 4-5pm my window is good enough to get up to walk around without a walker. This is when I take brief strolls around my apartment indoors. Around 6pm my window began closing and my regular symptoms of boatiness, ear ringing, intolerance to standing, imbalance and head symptoms steadily increase with each hour. Also during this time I have small visits of other symptoms pop in and out in mild degrees. Such as sneezing, muscle tightness, ears popping, muscle twitches, visual disturbances, feeling of low blood sugar, tight belly and a few other weird annoyances. By 10:30-11pm I go to sleep in a wave of the head symptoms and pretty noticeable boatiness. About once a week I also wake with an awful headache that last 24 hours. It’s sinus like but without anything wrong with my sinuses. Also once a week I have a big wave. This wave feels like I’m going to have a stroke. Also at random every few weeks I have a seizure like episode of sudden severe vertigo and loss of body control of my muscles such as can’t hold up my own body weight. This is why I’m bedridden. These take me awhile to bounce back from to be able to tolerate standing up again or walk around.

How do I cope?

I breathe through each wave with slow controlled breaths about 3 at a time then breathe normal a few minutes then repeat. This can be done while meditating for maximum effect. I use YouTube soothing relaxation channel. I pick something like raining in a forest, a spa, beach, waterfall, etc and I pretend I’m right there with eyes closed. Or you can choose classical lullabies for babies while cuddling a teddy bear, pillow or blanket and just pretend to be a calm baby. I know that sounds nuts but it works for me and if done at bedtime it could put you to sleep. The boatiness at night I pretend like I’m a baby being rocked to sleep. You know why? It’s much better to not fight our symptoms. During the day I use online games ( cardgames.io), non-stimulating movies, Netflix series, the positive threads here on BB and talking on the phone to distract me. I also use YouTube to go places. Now I know you really think I’m nuts!  But, I choose a country and YouTube has the virtual landmarks of those places that’s been recorded live. Also videos of their culture, food, language, way of life etc. you could choose a different country every week. 

There’s also live feeds of zoos, aquariums, museums, parks etc

Also while you’re in bed you can do exercises.

I hope this helps you. I’m wishing you, me and everyone stuck in bed that well be back to being upright very soon. I’ve gotten out of this bed before and I will again. So will you. Hang in there. I’m happy to answer any questions you have to the best of my ability. I’ve been in this bedridden club a longgggg time.

 

I am so sorry you are struggling but I will have to say I have taken some comfort in your words because my day goes very similar to your with almost every symptom except seizure strike type stuff but the timeline of the day is very similar. Things start to cool a little around 2pm for me instead of 1pm though and then around 5pm things start to close and get more intense for the evening. I so appreciate everything you typed about coping. I have taken a screen shot and will refer to tomorrow when I am panicking. I usually cry and call someone but talking is stressful for me too so it’s hard. I need to be better about breathing through it. I do good with coping for a day and then back to panicking about it all the next. I have pots and such an extreme heaviness in my body that it is very hard to be upright. I feel like cement pulling me down very heavy very painful. I explain it like my bones feel broken. The low blood sugar feelings really get me so I eat and then the food makes my heart races and I get hot flashes then 2-3 hours later my blood sugar drops again and it cycles like that all day. Most of the time my husband is bringing my meals into me in bed and we are looking at hiring a care giver for the days he is in the office. I feel such despair every day about when this will get better.

Thank you for commenting I don’t feel so alone.

 

Hi Fruity -  I am not a doctor but I am wondering.  Have you cut sugar out of your diet?  I know if I eat sugar (I have been) it makes everything 100x worse.  Also a really good probiotic did wonders for me too and vitamin C an D3.  I can’t take all the supplements I use to take because things bother me now.  I also can’t drink a lot of tea’s I use to drink, but decaf Green tea also really helps me.  When I drink Green tea regularly and stay off the sugar, take my probiotics and those vitamins it really helps.  One more trick I found was (from this site) Cherry Juice (unsweetened) about 4 oz at night.  It helps with sleep and has all kinds of good things in it too.  I am also going to start eating pomegranates (I love them anyway)because it’s the season and they are super nutritious and help with the heart/circulation and all kinds of other stuff too.  Then i will buy pure unsweetened pomegranate juice when I can’t get them at the market.  I use to have a tree.  I miss it so much.

 

You’re lucky you have a good husband who is taking care of you.  Hopefully you can find a good caregiver too.  I also have a great Partner (he will be my husband in the future) and he takes care of me if I need it.  My youngest thankfully is in high school and pretty self sufficient.  I am more mobile and if I have to I can force myself to do stuff.  Sometimes I have windows so it just depends.  Who knows what the future will hold.

 

I’ll be back again.  Take care 

 

Mare

[[Fr...]]

Hi Fruity. Sorry to hear you’re in this club too. Yes I’m still bedridden most of the day unfortunately. Here’s a typical day for me just to show you why I said “ most of the day”. I wake about 6:45 - 7am after sleeping about 6 hours. Most nights this isn’t solid straight through sleeping because I wake up once or twice usually around 3-4 am but I’m able to go back to sleep quickly. From 7am to about 1pm I have morning dread then waves at varying degrees. Around 1pm I began going into my evening window gradually. By 4-5pm my window is good enough to get up to walk around without a walker. This is when I take brief strolls around my apartment indoors. Around 6pm my window began closing and my regular symptoms of boatiness, ear ringing, intolerance to standing, imbalance and head symptoms steadily increase with each hour. Also during this time I have small visits of other symptoms pop in and out in mild degrees. Such as sneezing, muscle tightness, ears popping, muscle twitches, visual disturbances, feeling of low blood sugar, tight belly and a few other weird annoyances. By 10:30-11pm I go to sleep in a wave of the head symptoms and pretty noticeable boatiness. About once a week I also wake with an awful headache that last 24 hours. It’s sinus like but without anything wrong with my sinuses. Also once a week I have a big wave. This wave feels like I’m going to have a stroke. Also at random every few weeks I have a seizure like episode of sudden severe vertigo and loss of body control of my muscles such as can’t hold up my own body weight. This is why I’m bedridden. These take me awhile to bounce back from to be able to tolerate standing up again or walk around.

How do I cope?

I breathe through each wave with slow controlled breaths about 3 at a time then breathe normal a few minutes then repeat. This can be done while meditating for maximum effect. I use YouTube soothing relaxation channel. I pick something like raining in a forest, a spa, beach, waterfall, etc and I pretend I’m right there with eyes closed. Or you can choose classical lullabies for babies while cuddling a teddy bear, pillow or blanket and just pretend to be a calm baby. I know that sounds nuts but it works for me and if done at bedtime it could put you to sleep. The boatiness at night I pretend like I’m a baby being rocked to sleep. You know why? It’s much better to not fight our symptoms. During the day I use online games ( cardgames.io), non-stimulating movies, Netflix series, the positive threads here on BB and talking on the phone to distract me. I also use YouTube to go places. Now I know you really think I’m nuts!  But, I choose a country and YouTube has the virtual landmarks of those places that’s been recorded live. Also videos of their culture, food, language, way of life etc. you could choose a different country every week. 

There’s also live feeds of zoos, aquariums, museums, parks etc

Also while you’re in bed you can do exercises.

I hope this helps you. I’m wishing you, me and everyone stuck in bed that well be back to being upright very soon. I’ve gotten out of this bed before and I will again. So will you. Hang in there. I’m happy to answer any questions you have to the best of my ability. I’ve been in this bedridden club a longgggg time.

 

I am so sorry you are struggling but I will have to say I have taken some comfort in your words because my day goes very similar to your with almost every symptom except seizure strike type stuff but the timeline of the day is very similar. Things start to cool a little around 2pm for me instead of 1pm though and then around 5pm things start to close and get more intense for the evening. I so appreciate everything you typed about coping. I have taken a screen shot and will refer to tomorrow when I am panicking. I usually cry and call someone but talking is stressful for me too so it’s hard. I need to be better about breathing through it. I do good with coping for a day and then back to panicking about it all the next. I have pots and such an extreme heaviness in my body that it is very hard to be upright. I feel like cement pulling me down very heavy very painful. I explain it like my bones feel broken. The low blood sugar feelings really get me so I eat and then the food makes my heart races and I get hot flashes then 2-3 hours later my blood sugar drops again and it cycles like that all day. Most of the time my husband is bringing my meals into me in bed and we are looking at hiring a care giver for the days he is in the office. I feel such despair every day about when this will get better.

Thank you for commenting I don’t feel so alone.

 

Hi Fruity -  I am not a doctor but I am wondering.  Have you cut sugar out of your diet?  I know if I eat sugar (I have been) it makes everything 100x worse.  Also a really good probiotic did wonders for me too and vitamin C an D3.  I can’t take all the supplements I use to take because things bother me now.  I also can’t drink a lot of tea’s I use to drink, but decaf Green tea also really helps me.  When I drink Green tea regularly and stay off the sugar, take my probiotics and those vitamins it really helps.  One more trick I found was (from this site) Cherry Juice (unsweetened) about 4 oz at night.  It helps with sleep and has all kinds of good things in it too.  I am also going to start eating pomegranates (I love them anyway)because it’s the season and they are super nutritious and help with the heart/circulation and all kinds of other stuff too.  Then i will buy pure unsweetened pomegranate juice when I can’t get them at the market.  I use to have a tree.  I miss it so much.

 

You’re lucky you have a good husband who is taking care of you.  Hopefully you can find a good caregiver too.  I also have a great Partner (he will be my husband in the future) and he takes care of me if I need it.  My youngest thankfully is in high school and pretty self sufficient.  I am more mobile and if I have to I can force myself to do stuff.  Sometimes I have windows so it just depends.  Who knows what the future will hold.

 

I’ll be back again.  Take care 

 

Mare

 

Thank you Mare. I don’t eat sugar, only Whole Foods and gluten free. Meat, eggs, potatoes, rice veggies and berries.

[[La...]]

Fruity you are very welcome. Might I suggest you get a blood sugar monitor. Sometimes even though we feel the blood sugar drop, it may be normal. WD unfortunately does this to us. Checking it will help you to make sure. Hope we both feel better soon. I also hired a caregiver. 

[[Fr...]]

Fruity you are very welcome. Might I suggest you get a blood sugar monitor. Sometimes even though we feel the blood sugar drop, it may be normal. WD unfortunately does this to us. Checking it will help you to make sure. Hope we both feel better soon. I also hired a caregiver. 

 

My blood sugar is normal when I check it so the hypoglycemia episodes probably has more to do with stress hormones. May I ask how often your caregiver comes and what she helps with?

[[La...]]

She comes M- F from 8am to 1pm. That’s when I’m at my worst. She helps with making my breakfast and lunch. helping with my personal care such as get baths, brush teeth, clean clothes on, assist when I’m trying to walk, retrieve things for me, put away deliveries such as groceries and light housework. Basic personal assistant stuff. Because I’m bedridden and so boaty/ dizzy living alone I needed some help. So I picked a time that I needed the most help. I start going into a window normally after lunch improving until about 5-6pm evening. During this time, my daughter is home from school and I rarely ever need any assistance then. Also my son and his fiancé is off work by then. Personal assistant isn’t cheap but so worth it to prevent falls as well as making things so much easier while you recover. You can post on Facebook that you’re looking to hire someone. Or tell your friends and relatives to spread the word or go on care.com

[[Fr...]]

Yes that boaty feeling is really ramping up for me. That is a good way to describe it. I could never put words to it but it makes it’s hard to scroll, type, and read from the movement. Or even watch shows on a lot of days. Do you get overstimulated being around your kids? I have a hard time even with that. This is so hard.

[[La...]]

Yes I do when my very young granddaughters come to visit. I wear ear plugs and limit my time with each one. One at a time. I make sure the baby is calm before I hold her. I make sure my older granddaughter (she’s 5) has had a snack and happy then I get her in bed with me or on the seat next to my bed. We play, talk, etc. then I send her back to her parents.

As far as watching tv or a screen I don’t really have much trouble with it. Thank God because it’s been my best coping tool. Try to limit your screen time. Take a break every 30 minutes.

[[Fr...]]

Will try thanks! The boaty feeling is a new one for me so it makes the screen worse. Do you get anxiety and agitated when people or the kids come in your room? Sometimes it just adds to the coming out of skin feeling.

[[La...]]

Yes but I establish rules for coming in my room. Soft indoor voice only, no talking loud, only positive conversations unless there’s an emergency I need to be made aware of, no loud noises such as whistling or slamming doors etc. brief visits only. They can come back after about 30 minutes or so as much as they like. No telling me about anything scary, violent or too stimulating. Such as a movie they watched or something they saw. My room is a calming peaceful zone ONLY! Kids are very smart. If you tell them you’re sick surpringly they can behave better than the adults. My 5 yr old granddaughter will come in my room and ask me if I’m feeling good. If I tell her no she says “ ok, I’ll be really quiet and good” then she climbs in bed with me and we watch Sesame Street or Blipping together. She’s real high energy but not around me because she knows I’m sick. Her parents will come in here to check on her that she’s not being too much and they’re amazed at her being so quiet and good. Many times she’ll fall asleep in my arms. But my grown son will bust in my room talking loud, slamming doors, telling me upsetting things he’s watched, whistling, singing loud, etc. I have to ask him over and over to stop.

For the little ones I have a special area in my room for them to visit with me. Coloring books, toys that don’t make noise, an iPad with headphones for them to watch cartoons, cards and snacks. When I know they’ll stay for a few hours I make them a fort putting toys, pillows, flashlight, iPad etc in it. It keeps them occupied the whole day. Out of my room. 

[[Fr...]]

Yes but I establish rules for coming in my room. Soft indoor voice only, no talking loud, only positive conversations unless there’s an emergency I need to be made aware of, no loud noises such as whistling or slamming doors etc. brief visits only. They can come back after about 30 minutes or so as much as they like. No telling me about anything scary, violent or too stimulating. Such as a movie they watched or something they saw. My room is a calming peaceful zone ONLY! Kids are very smart. If you tell them you’re sick surpringly they can behave better than the adults. My 5 yr old granddaughter will come in my room and ask me if I’m feeling good. If I tell her no she says “ ok, I’ll be really quiet and good” then she climbs in bed with me and we watch Sesame Street or Blipping together. She’s real high energy but not around me because she knows I’m sick. Her parents will come in here to check on her that she’s not being too much and they’re amazed at her being so quiet and good. Many times she’ll fall asleep in my arms. But my grown son will bust in my room talking loud, slamming doors, telling me upsetting things he’s watched, whistling, singing loud, etc. I have to ask him over and over to stop.

For the little ones I have a special area in my room for them to visit with me. Coloring books, toys that don’t make noise, an iPad with headphones for them to watch cartoons, cards and snacks. When I know they’ll stay for a few hours I make them a fort putting toys, pillows, flashlight, iPad etc in it. It keeps them occupied the whole day. Out of my room. 

 

That’s sounds amazing! You are a wonderful mom a d grandma. I am still coming out of my skin in fear so everything scares me and is overstimulating. I hope to get where you are one day. What area if the country are you in?

[[La...]]

South east coast of USA in SC. But I’m from Louisiana. Where are you?

 

Hello Marie! How are you doing today sweetie?

[[Fr...]]

South east coast of USA in SC. But I’m from Louisiana. Where are you?

 

Hello Marie! How are you doing today sweetie?

 

I am in AZ. What do you do when you can’t distract because everything is overstimulating and you have burning pain and huge fear.

[[ho...]]

Hi girl’s -

 

Fruity - I saw you on another thread and it had to do with nutrition (I was lurking) so I figured you were definitely on top of your diet.  Great news.  You are ahead of the game.  I need to get back in gear.    I see you are in AZ.  I am in CA.  I hope you can get some relief for your burning.  My face is the only place that burns really bad, like a really bad sunburn.  So I use fresh Aloe Vera, and Ice packs.  It gives some relief.  I do get really bad pain, like bone crushing pain…I feel like my shoulders are coming out of my sockets at times and my hips too…then my calves just hurt, my muscles feel like I worked out far too hard, but I haven’t.  So I take break through pain medication every couple of weeks, but I keep it to a minimum.  I just take it for a few day’s to give my body a break.  It helps.  It’s like those few days or so, and I get some rest and I can keep moving on.  I just don’t want to be on pain med’s on a regular basis (don’t get me wrong, some days I do, and I consider it) and then have to deal with that possible issue.  I didn’t have an “addiction” to benzo’s, I had a dependence but who knows with opioids.  What if?  I just don’t want to take any chances, I hear so many horror stories.  Anyway….that’s enough rambeling.

 

Lady - You give such great advice as always.  Nice to hear about your grandkids and the baby must be getting big  . So nice that you have morning help.  I want that too.  But I just don’t think I can justify it at this point.  I can get up and do stuff, it’s I just don’t feel good much of the time….more of the dreaded “benzo flu” and pain issues.  I am hoping to stay more connected on here. 

 

Roxy???  How are you?

 

Marie

[[Be...]]

It's very sad to read that many of you are so unwell that you need caregivers. 

[[ho...]]

It's very sad to read that many of you are so unwell that you need caregivers.

 

HI-  I know. These darn benzo’s. Thankfully I do not require a caregiver at this point ….I would like one. I hope it never gets to that point.  My heart goes out to my bb’s that are worse than me.  It puts things in perspective.  It is HELL on many days, and I do have a house keeper coming now.  But I can get up.

 

Praying for all 

[[La...]]

Hi girl’s -

 

Fruity - I saw you on another thread and it had to do with nutrition (I was lurking) so I figured you were definitely on top of your diet.  Great news.  You are ahead of the game.  I need to get back in gear.    I see you are in AZ.  I am in CA.  I hope you can get some relief for your burning.  My face is the only place that burns really bad, like a really bad sunburn.  So I use fresh Aloe Vera, and Ice packs.  It gives some relief.  I do get really bad pain, like bone crushing pain…I feel like my shoulders are coming out of my sockets at times and my hips too…then my calves just hurt, my muscles feel like I worked out far too hard, but I haven’t.  So I take break through pain medication every couple of weeks, but I keep it to a minimum.  I just take it for a few day’s to give my body a break.  It helps.  It’s like those few days or so, and I get some rest and I can keep moving on.  I just don’t want to be on pain med’s on a regular basis (don’t get me wrong, some days I do, and I consider it) and then have to deal with that possible issue.  I didn’t have an “addiction” to benzo’s, I had a dependence but who knows with opioids.  What if?  I just don’t want to take any chances, I hear so many horror stories.  Anyway….that’s enough rambeling.

 

Lady - You give such great advice as always.  Nice to hear about your grandkids and the baby must be getting big  . So nice that you have morning help.  I want that too.  But I just don’t think I can justify it at this point.  I can get up and do stuff, it’s I just don’t feel good much of the time….more of the dreaded “benzo flu” and pain issues.  I am hoping to stay more connected on here. 

 

Roxy???  How are you?

 

Marie

How very kind of you Marie. Yes the baby is getting big becoming more mobile and a professional hair grabber. Lol She’s adorable as can be. Few days she’ll be 7 months. Wow time is flying by. I’m sorry about all your pain. Sounds like you’ve got some good tools in place to give some relief. Great advice you gave to Fruity. I’ve read on other threads that ice packs help. It makes sense to do the opposite to tell the brain to calm down. I have some burning too but it’s mild. It pops in and out. Mostly just in my feet. One strange symptom I’ve had off and on is itching fingers and toes but ONLY at night when I’m going to sleep. 😆 It’s not every night but for a few nights in a row then disappear a couple nights then come back. Weird! Pretty much just annoying.

I also was wondering about Roxy??? Glad to see you join the game thread as well. Thank you. Super hugs to you. Happy healing my dear.

[[La...]]

It's very sad to read that many of you are so unwell that you need caregivers.

Yes ma’am!!! Sad is an understatement. But I don’t have a choice. I don’t have anyone to help me during the day. I’m bedridden so I can’t fix myself food, walk around very far, etc

But you know what, I won’t be in this bed for too much longer. I’m going to do what I did last time gradually recondition myself as much as my symptoms let me. 

Hugs to you Becks. I hope you do something fun today 

[[ho...]]

Lady- I can’t believe it’s been 7mo Wow! Time just goes by so quickly. It seems like yesterday that you were counting down the days until her arrival.  Isn’t it just like a pesky side effect to show up when you are trying to go to sleep  ….”itching”.  Just not right.  But the theory does go that we do the major part of healing at night or when the body is at rest/ sleeping.  I hope your day is going well. I am actually up and moving around, slowly but getting stuff done. Vibrating ….So I am taking a break for now.  I always love the games, thank you 

 

sending healing prayer’s

 

Marie

[[Fr...]]

It's very sad to read that many of you are so unwell that you need caregivers.

Yes ma’am!!! Sad is an understatement. But I don’t have a choice. I don’t have anyone to help me during the day. I’m bedridden so I can’t fix myself food, walk around very far, etc

But you know what, I won’t be in this bed for too much longer. I’m going to do what I did last time gradually recondition myself as much as my symptoms let me. 

Hugs to you Becks. I hope you do something fun today 

 

I have tried to do the same but I think I pushed to hard to soon. By that I mean I sat out at the dining table for dinner three nights in a row and the lots two nights of sleep have been horrible because of it. So much adrenaline and burning nerve pain in head and body. This morning I am really cold so my go to of ice packs are out of the question until afternoon.

[[ho...]]

It's very sad to read that many of you are so unwell that you need caregivers.

Yes ma’am!!! Sad is an understatement. But I don’t have a choice. I don’t have anyone to help me during the day. I’m bedridden so I can’t fix myself food, walk around very far, etc

But you know what, I won’t be in this bed for too much longer. I’m going to do what I did last time gradually recondition myself as much as my symptoms let me. 

Hugs to you Becks. I hope you do something fun today 

 

I have tried to do the same but I think I pushed to hard to soon. By that I mean I sat out at the dining table for dinner three nights in a row and the lots two nights of sleep have been horrible because of it. So much adrenaline and burning nerve pain in head and body. This morning I am  really cold so my go to of ice packs are out of the question until afternoon.

 

Fruity-

 

It is so amazing how over doing it can really set us back.  I have to be so careful too.  I happen to be in a window today, and was able to get some things done this morning, but as soon as I started vibrating I laid down on the couch.  I did get up after a bit and finish a load of laundry, but that is it for the day.  If I push myself, I know I will be right back in a wave.

 

I’m sorry that you have had poor sleep and the burning.  I only have the burning on my face (hopefully it remains only there) and it can get pretty uncomfortable, so I couldn’t imagine not being able to put ice packs on….you poor thing.    I do a lot of eating on the couch/bed….we don’t eat at the table.  We should but we don’t, so it works.  I couldn’t imagine having to do the dinner’s at the table right now.  So good for you 

 

Hoping your day improves and you can get some ice pack time 

 

Marie

[[Fr...]]

It's very sad to read that many of you are so unwell that you need caregivers.

Yes ma’am!!! Sad is an understatement. But I don’t have a choice. I don’t have anyone to help me during the day. I’m bedridden so I can’t fix myself food, walk around very far, etc

But you know what, I won’t be in this bed for too much longer. I’m going to do what I did last time gradually recondition myself as much as my symptoms let me. 

Hugs to you Becks. I hope you do something fun today 

 

I have tried to do the same but I think I pushed to hard to soon. By that I mean I sat out at the dining table for dinner three nights in a row and the lots two nights of sleep have been horrible because of it. So much adrenaline and burning nerve pain in head and body. This morning I am  really cold so my go to of ice packs are out of the question until afternoon.

 

Fruity-

 

It is so amazing how over doing it can really set us back.  I have to be so careful too.  I happen to be in a window today, and was able to get some things done this morning, but as soon as I started vibrating I laid down on the couch.  I did get up after a bit and finish a load of laundry, but that is it for the day.  If I push myself, I know I will be right back in a wave.

 

I’m sorry that you have had poor sleep and the burning.  I only have the burning on my face (hopefully it remains only there) and it can get pretty uncomfortable, so I couldn’t imagine not being able to put ice packs on….you poor thing.    I do a lot of eating on the couch/bed….we don’t eat at the table.  We should but we don’t, so it works.  I couldn’t imagine having to do the dinner’s at the table right now.  So good for you 

 

Hoping your day improves and you can get some ice pack time 

 

Marie

 

I eat in my bed always but was trying to do exposure therapy and force myself to be with the family and sit upright. Backfired after three days. I am really struggling I am reactive hypoglycemia which makes everything worse and I can’t seem to get a handle on the hypoglycemia roller coaster it just makes all the symptoms so much worse. It was a very bad day but had maybe an hour or row of a bit of relief only to have a hypoglycemia episode then the burning and pain everything all over again. This is really kicking my butt. I have been on my back in bed for over three months now. Really just going to the bathroom. My husband brings my meals to me in my bed. I have pots and lots of adrenaline surges every hour an da half through the night. Ugh bad day. I don’t see how I can get through this. Sending healing to everyone here.

[[ho...]]

It's very sad to read that many of you are so unwell that you need caregivers.

Yes ma’am!!! Sad is an understatement. But I don’t have a choice. I don’t have anyone to help me during the day. I’m bedridden so I can’t fix myself food, walk around very far, etc

But you know what, I won’t be in this bed for too much longer. I’m going to do what I did last time gradually recondition myself as much as my symptoms let me. 

Hugs to you Becks. I hope you do something fun today 

 

I have tried to do the same but I think I pushed to hard to soon. By that I mean I sat out at the dining table for dinner three nights in a row and the lots two nights of sleep have been horrible because of it. So much adrenaline and burning nerve pain in head and body. This morning I am  really cold so my go to of ice packs are out of the question until afternoon.

 

Fruity-

 

It is so amazing how over doing it can really set us back.  I have to be so careful too.  I happen to be in a window today, and was able to get some things done this morning, but as soon as I started vibrating I laid down on the couch.  I did get up after a bit and finish a load of laundry, but that is it for the day.  If I push myself, I know I will be right back in a wave.

 

I’m sorry that you have had poor sleep and the burning.  I only have the burning on my face (hopefully it remains only there) and it can get pretty uncomfortable, so I couldn’t imagine not being able to put ice packs on….you poor thing.    I do a lot of eating on the couch/bed….we don’t eat at the table.  We should but we don’t, so it works.  I couldn’t imagine having to do the dinner’s at the table right now.  So good for you 

 

Hoping your day improves and you can get some ice pack time 

 

Marie

 

I eat in my bed always but was trying to do exposure therapy and force myself to be with the family and sit upright. Backfired after three days. I am really struggling I am reactive hypoglycemia which makes everything worse and I can’t seem to get a handle on the hypoglycemia roller coaster it just makes all the symptoms so much worse. It was a very bad day but had maybe an hour or row of a bit of relief only to have a hypoglycemia episode then the burning and pain everything all over again. This is really kicking my butt. I have been on my back in bed for over three months now. Really just going to the bathroom. My husband brings my meals to me in my bed. I have pots and lots of adrenaline surges every hour an da half through the night. Ugh bad day. I don’t see how I can get through this. Sending healing to everyone here.

 

Fruity -  I have been lurking a few places and have come across some of your post, so I am getting to know your story a little better.  I was in the Long Hold  group today and lurking….You poor thing.  I get trying the exposure therapy and wanting to be with your family. This must be very hard on you.  Hopefully very soon your body will just click.  I don’t know much about “reactive Hypoglycemia”.  I will look into that. I know a little about Hypoglycemia.  Did you have Hypoglycemia before you did wean off of benzo’s, or was it because of the benzo’s and w/d?  Also I know a little about POTS only from the Benzo forum too, and the adrenal surges. Does POTS make the adrenal surges worse, or vice versa? Or are they completely independent? I am learning so much about how the CNS really can affect our entire bodies and the complete havoc that can occur.  And the healing time can be so long too……*sigh*. It is scary at times.  It makes me want to slow down again as to not upset my CNS anymore than I already have. 

 

Today i started in a window, and by afternoon I was in a wave….I sit here typing with blurry eyes, tinnitus, and my face is burning and itching, and my bones feel like they want to separate from my sockets.  It’s all too much sometimes.  But I am thankful I can go out and drive if i have too, and get up and brush my teeth and shower today.  There have been times I couldn’t.

 

I do believe I read you are holding right now…..and have been for a while (like 2months/3?) correct me if I am wrong.  Before that, did you ever feel like you went too fast?  I can’t see your signature right now.  Is it just maybe your CNS trying to play catch up, like being in “acute” but you’re really not in acute.  And it just may take a little while longer for everything to settle down……

 

I can’t remember the women’s name who was sharing about her weaning for a long time and then holding for 3 years, and then starting again and how good she felt.  That really encouraged me.  I was so determined in the beginning to get off, and I had it all mapped out and when that didn’t happen, I felt like the bottom had dropped out, and I would never get off.  Breaking up with my calendar was very hard to do.   Anyway, her story was encouraging and even made me rethink my next part of my wean down strategy.  I am terrified to end up bedridden, more than I already am.

 

I wish I could help….I can only offer up some Prayer’s and I will do that.

 

Marie

[[Fr...]]

Hi Marie- I went pretty slow but tapered my AD at the same time and have a kindled history very bad tolerance and very sick when I started. My story is all over the place with cts and such. I hit a crash once my taper got over 11% and under about 2.5mg of v equivalent. I slowed to 2% first month after the crash then held 4 weeks and then started cutting two weeks ago at 2%. I decided two days ago to hold again because even the 2% wasn’t going well. I don’t ever feel like holds help me but I am not sure what to do at this point. I seem to be reacting to everything I eat. I can feel ok and then I eat and have have burning pain after with anxiety. I only eat Whole Foods but it seems the carbs maybe a problem but with hypoglycemia I can’t do low carb. Hypoglycemia is something I have dealt with my since 18 but it usually comes on from not eating enough. I am eating quite a bit and just getting sicker. Thank you for the prayers sorry for your wave. I will type more tomorrow. Trying to get to sleep early tonight.

[[La...]]

Morning everyone. When I’m sitting up I try to do short exercises in my arms and legs to regain strength. Laying in bed for awhile makes us lose muscle tone. When I get to the point that I can be upright for longer timespans , I want to be as strong as I can. Love to you all. Try to keep your strength as much as you can. Also YouTube has chair yoga for elderly or disabled that can be done while sitting or laying down. It’s done with fun upbeat songs. I think the instructor is names Sherry.

[[Fr...]]

Thanks Lady- I tried stretching while laying on my back on the floor and it caused the most intense wave for now I am not pushing anything. The strangest thing has been happening for months when I sleep I wake every 1.5 hours on the dot to my heart racing. It last 20-30 mins then I go back to sleep only to have it happen an hour and a half later again all night. I am grateful for the sleep I get in between this but it’s so boxy.Does anyone deal with this? I met one other person who had the same thing all four years she tapered so I guess I am grateful it just started.