~~The Bedridden Club~~

[Guest [Fu...]]

I'm mostly bedridden because of the horrible depression and fear that I have from the constant depersonalization. I also have terrible fatigue and cannot do much exercise and TV/the computer is usually too stimulating. I'm basically just existing to breathe every minute that I'm not asleep. I wish I could at least watch TV and do some yoga again. I don't know how anyone can live this way without going insane.

[[4G...]]

Thanks Unicorn and Fuzzy Dunlop. It looks like I will be in bed again today. I have a really strange feeling in my head. I also keep thinking that I can't stand it any more, although I do have windows. However, when I'm in a wave like this I think it will last forever.

Anyone else stuck in bed today? X

[[tr...]]

Soon I "celebrate" 26 months on the couch. In this, and on the table, it's a "bomb crash", it's so messy. But I just can`t...

 

What is also difficult is sensitivity, can`t  think of something that is unpleasant. Then there will immediately be a wave of discomfort with a feeling of fever and sweating. It burns and sticks to the skin. I thought it was over, but it has certainly come back.

Feeling very ghastly, neither TV or reading is fun. Taking me through minutes, hours and days. I don`t remember how it feels to be normal, to clean and have fun. No windows.

 

So today it feels dark and hopeless. Just waiting for night to sleep. But I have all my friends here, and I am very grateful for that!

[[Un...]]

Thanks Unicorn and Fuzzy Dunlop. It looks like I will be in bed again today. I have a really strange feeling in my head. I also keep thinking that I can't stand it any more, although I do have windows. However, when I'm in a wave like this I think it will last forever.

Anyone else stuck in bed today? X

 

4Gilly what do you occupy yourself with, while bedridden?  That's a tough one for me, as I seem to drown in horrific thoughts all day.  It's so great to know you are all here.  I started to think I was the only one bed and house bound.  I can sit out in our yard when at our home, but most of the time I'm confined to a 4th story studio apartment.  We have to be there during the week for my husband's job.  It's awesome you have windows.  I am still so fresh out of the gate I haven't had any, so my mind is telling me I'm permanently damaged and will never get better. 

 

Today is day 29 for me.  I was in a detox/rehab center and had to leave at the two week mark because they forced us to do way too much and I was losing so much weight, constantly in motion and exhausted.  I could barely walk, there.  Other residents had to help me.  What I needed was counseling, education and rest.  Not to be herded off to meetings and constantly going.  When I came home, I felt so relieved to be out of there and able to lay down.  I thought the weakness and fatigue would lift quickly, but was I wrong or what!?  I pray there is hope for this to get better.  I keep reading success stories and they give me hope, although I can't imagine going on months like this, let alone another week. 

 

What do you do to keep from losing it, mentally?  This forum helps quite a bit, being able to connect with all of you.  I need so much repeated encouragement it's ridiculous.  My husband promised me it won't be like this forever and it's temporary, then in an hour or less I need to hear it again...and again.  I was so bright-spirited, independent and interested in life and people.  I'm hoping to get my spirit and strength back.  This is the hardest experience I've ever had.  The not knowing really messes with my mind. 

 

Sending you positive thoughts and lots of hope for complete recovery and well-being.  This will definitely be a regular place I'll visit to stay connected. What a blessing it is to have this site. 

[[Aj...]]

I'm mostly bedridden, aside from getting to the kitchen or bathroom.  Mine isn't due to anxiety, rather physical symptoms.  I'm very weak and unable to exercise.  It's like my muscles feel atrophied. I don't understand this at all.  I was perfectly fine prior to detoxing from Klonopin.  I'm housebound because I can't walk or stand for longer than a couple minutes.  Does anyone else out there have this?  Also I feel cold all the time.  So relieved tomkno2 I'm not the only one in bed all the time.  28 days in for me.

 

Me too as well as lots of muscle rigidity and pain which prevents me from being able to get comfortable at all. It's hell isn't it.

 

 

 

As far as things for distraction the only thing I can do is listen to audio books. I often can't concentrate on them and end up listening to the same bit over and over. I have them on an iPod attached to a clock radio dock that has a timer so I can have them on while I try to fall asleep as well to distract from my thoughts and the timer will turn it off.

 

I subscribe to Audible but there is also Libravox https://librivox.org/ which is free and Newyorker Magazine has free podcasts of short stories here  https://www.newyorker.com/podcast/fiction and here https://www.newyorker.com/podcast/the-authors-voice These can be listened to online or downloaded via iTunes and put on an iPod or a podcast app like Stitcher.

 

 

[[jo...]]

I'm so grateful this topic is here. I've been reading it but I forget it every day, like everything else. For me, since Oct. 6, my life has been bed/couch/kitchen/bathroom, every day. One day when I went to the doc, back in January, the weather was unseasonably warm and sunny so my husband stopped at the local college track to get me to walk around. On the second lap I almost collapsed, my hips were killing me, and we had to come home. The head sensation was unreal, too.

 

I'm going to leave this tab open in a separate window so I'll remember to come back every day and get some reassurance that I'm not alone in this CT hell and that none of this is permanent.

 

I'm very grateful for all of you. I just wish we'd come together under much different conditions.

 

I so want to enjoy life again instead of simply surviving every day!

 

[[tr...]]

Joantics, you're definitely not alone. We are many here who really only need a sofa, a bathroom and a fridge. It's a tough existence, but we'll go through this TOGETHER. It will be our turn to write a success story!

[[Ni...]]

Very recognizable stories. During PAWS my dysautonomia was so severe i couldn't even take a shower on most days.

Heat intolerrance would leave me bedridden and completely exhausted for days.

 

It has gotten better the last year though.

 

Stay strong buddies!

[[Un...]]

Very recognizable stories. During PAWS my dysautonomia was so severe i couldn't even take a shower on most days.

Heat intolerrance would leave me bedridden and completely exhausted for days.

 

It has gotten better the last year though.

 

Stay strong buddies!

 

Hi Nick.  Pardon my ignorance but what is dysautonomia?  I may look it up but try not to search symptoms online for fear of the triggers. 

[Guest [Fu...]]

Hi guys, I'm really, really struggling. I've been in bed for pretty much the past four days straight and I don't know how anyone can do this without feeling insane. I can't even listen to YouTube videos or audio books or podcasts. I'm just completely overwhelmed by terror and my intrusive thoughts. It's too much to handle. The depression is too much to handle. Really need support today.

[[Aj...]]

Shhh

 

It's okay!

 

Breathe out.

 

Breathe out again.

 

It's okay to be very upset.

 

It's okay to feel insane.

 

Shhh.

 

 

 

I know it doesn't help Fuzzy but I spent 2 years bedridden in a dark room unable to sleep, bear any noise, light or touch and dizzy to the point the room spun when I first had ME/CFS.

 

That is how I know it is possible to survive such things.

 

I know you will get to the otherside of this.

 

Feeling insane in such a situation is completely normal however hard it is.

 

Do you know how to self soothe?

 

If you can't tolerate youtube videos or books could you manage some calming music. I am not a religious person but I find religious & choral music very calming.

 

Try this:

 

Or maybe somthing like Arvo Part?

 

Or the sound of the ocean if you don't find such things too upsetting. I often do because I miss the world so much.

 

What about using touch to soothe yourself - maybe a heat pad or something soft to stroke.

 

People are here for you.

 

 

 

[[Be...]]

Fuzzy, hope you feel better soon.

[[tr...]]

Fuzzy! I stretch my hand off the couch. Here's the same hell, think soon I'll be crazy. I also can`t listen to music or read, just get anxiety. I love hardrock, but not now!

Have just showered, and it took two days to convince myself that I have to. This is really the worst I've been to.

[[4G...]]

I was asked how I fill the days when bedridden. Well, I sometimes read, if I can't concentrate on a book then I can read magazines. I have my little cat to talk to. I come on this site or I play Solitaire on my tablet. Just trying to get through It I guess. What do other people do?

[[4G...]]

Oh yes, I also watch tv and DVDs if I feel able to......

[[tr...]]

Gilly, I also wonder what I really do in the days, it's not much. It gets the most TV and the Internet, but I'm getting tired of it so fast. Everything feels so unpleasant in some way, so I would rather not. Trying to crawl under the blanket and meditate, but getting palpitations so I have to rush up in panic. The days go by and life goes on nothing. Periodically there is a panic attack and I have to calm down. What a life!

[Guest [Fu...]]

I spent literally all day today in and out of sleep. I just can't handle the torment of reality anymore. But eventually I woke up with an absolutely killer migraine. I just can't handle the bad acid trip that is life with constant depersonalization and no distractions.

[[tr...]]

Sleep is the only comfort here in life. During the first months after CT I was awake for 4 days at a time. In months 4-7 it was 5-6 hours/day and then normal. But during the months 20-23 I could sleep 18-20 hours/ day. I was very unpleasant for it, at least time went by. If I'm falling asleep for a few hours of the day I'm awake all night long and suffering. The nights are the worst, you never feel so lonely. Fuzzy, how much do you sleep?

[Guest [Fu...]]

You slept 18-20 hours a day? My sleep is so broken up that it's hard to tell but it's usually around 10 hours total. But if I sleep too much I'm dehydrated and I haven't eaten which makes my anxiety a lot worse.

[[tr...]]

Fuzzy, for a certain period I slept so much, but it was distributed throughout the day. It's the same for me with the food, and of course I'm getting powerless. During the first year all metal and paper tasted, it was not good.

 

Also it is very crowded in the throat and over the chest. Then I'm almost nauseous when I'm going to eat or drink water. Is that the same for you?

[[4G...]]

I am going through a very bad wave right now. It seems like it will never end. I can barely get up and am very frightened. My bf is off work for the next three days. That is maybe a good thing as I don't feel safe on my own. I have brain fog and  am finding it difficult to do anything. Intrusive thoughts are a big problem.

[[4G...]]

Translator, How do you cope with your panic attacks?

[[tr...]]

How is it going for you? Here is the snow storm so there is more or less disaster in the body. It feels like I have very high fever, and dragging me to the bathroom (with a blanket over me). There is no beautiful sight! Don`t know if I'm going to laugh or cry when I see myself in the mirror.

 

Visited today when good friends have been shopping for me. But I felt so cruel (although I tried to keep a happy facade) and was just waiting to be alone. Wondering how it feels to feel good, and manage to shop and be among people?

 

Gilly, my hard anxiety/terror has begun to go over. In the last time I've experienced nervousness that almost makes me crazy. All I can do is think about breathing, and when it's been the worst I've breathed in a paper bag.

Anxiety attacks are terrible, one feels so extradited. It's hard to get on something that relieves, I'm just trying to breathe and take me through the attack. But slowly but surely it will disappear, now I dare to enter the bedroom! How is it going for you? Hug!

[[4G...]]

Hi Translator, It's not going very well. I am in bed nearly all the time now. I just lie here and cry. It's been going on for so long now that I cant see me ever getting better. I am not interested in anything any more. I don't know what to do. My bf is here a lot at the moment so that is good. He is downstairs and I am in bed. Hugs to you too.

[[tr...]]

I have a strange thing that is hard to explain to others. I feel restless, and can`t focus on anything. Feeling stressed in some way, but at the same time indifferent to most things. The days go on nothing. Is that something you recognize?