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Mustang hello  :)

What you’re describing although scary is normal wd symptoms. I’ve had many of those on your list. Some I still do but they’re milder now. I’m 23 months today! Wooohooo! Time is the best advice I can offer you as well as being of a support by simply understanding. At 13 months off it is normal to have symptoms get a bit more intense or get new ones. There’s also milestone waves in which around a year is common to feel like you’re back in acute. I have no idea why this happens but they’re common. I also had them. And had another at 1 and half year milestone. Will I get one at 2 years….lord I hope not! I’m leaning more toward being at the end of this recovery. My symptoms ( the ones I have left) are milder but kick up when I have a wave. Lately I’ve been having more waves with little new ones popping in and out….rapid cycling. It feels like I’m going backwards in my healing but that is an illusion. It actually is doing fine tuning. Which is definitely progress. I have always loved the phrase on here that says feeling is healing. When our brains don’t get it right, it goes to work to fix it. Unfortunately in most cases that fixing is slow and little by little. I’d like to encourage you to stay distracted using your hands as best as you can. This will definitely serve several purposes to help as you heal. It keeps us from being focused too much on our symptoms. It helps pass the time. It gives the brain an exercise/ task to perform as good practice in the healed normal state we will be in. Also it promotes positivity and oftentimes the body follows the brain’s mood. It’s my opinion that it should be something you enjoy but not to frustrate you. In the meantime what I also do to cope with my symptoms is set a daily schedule. My goal is to only get through that day. I make a list of things to do…strictly follow it. What time I eat, when I watch tv, laundry, walk, etc. This helped my cognitive skills and made it easier to not forget things. If a wave disrupts it, I simply pick back up at whatever time it is and keep going. I hope this can be of help to you too. I’m sorry that you are having a rough time. Please hang in there. Time is truly your answer. Also meditation may help especially calming music like spa music. It’s amazing how it can take you to a nice place if you close your eyes while listening in the darkened room.  :thumbsup:

Zman I’m praying for you. So happy to hear that you are not doing worse. Thanks for the update my friend! Big hugs!

 

Congrats on 23 months LadyDen, you’re a conqueror

Thanks a million my friend! 👍🏼🤗

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Ladyden thank you as always for your encouraging words they help so much. 

 

Zman we keep praying for you!

 

Mustang bless your heart you have suffered so much.

 

Prayers for everyone.  I'm not feeling my best but just wanted to check on everyone.

 

Hugs💕

I’m sorry my dear Dianne that you’re feeling bad. Guess what? I’m not feeling good either. Sucks! I’m praying for you too. Please let me know how you’re doing. I’m going to Netflix and chill today…..

Distract distract distract!

Virtual hugs 🤗❤️🌹

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I hate to be so negative, I really do. I really wish I had better things to report or talk about. It makes me feel bad that I can’t be more encouraging to others and I also feel so selfish for being in “survival mode” non stop 24/7

 

It’s been 12 days and I’m still testing positive for Covid-19. The weirdest thing happened when I first came down with symptoms and a high fever 12 days ago, it was like my withdrawal symptoms almost vanished and the only problems that were happening were the fever and the body aches.

 

I’m not running a high fever anymore, and even though I still have a cough, it’s not terribly bad, but now the benzo s/x are back in a major way. My legs burn like they are dipped in fire. Anxiety is back bad. I’m still fully bedridden and only get up to use the toilet because I get so dizzy. My muscles… they say jelly legs…. Well my muscles have literally turned to jelly, despite me writhing around in pain constantly.

 

I’m not sure how much more I can take

Nothing helps

And I feel like my wife hates me

I have never seen her act so mean and unhappy

This is so terrible and I’m so depressed

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I hate to be so negative, I really do. I really wish I had better things to report or talk about. It makes me feel bad that I can’t be more encouraging to others and I also feel so selfish for being in “survival mode” non stop 24/7

 

It’s been 12 days and I’m still testing positive for Covid-19. The weirdest thing happened when I first came down with symptoms and a high fever 12 days ago, it was like my withdrawal symptoms almost vanished and the only problems that were happening were the fever and the body aches.

 

I’m not running a high fever anymore, and even though I still have a cough, it’s not terribly bad, but now the benzo s/x are back in a major way. My legs burn like they are dipped in fire. Anxiety is back bad. I’m still fully bedridden and only get up to use the toilet because I get so dizzy. My muscles… they say jelly legs…. Well my muscles have literally turned to jelly, despite me writhing around in pain constantly.

 

I’m not sure how much more I can take

Nothing helps

And I feel like my wife hates me

I have never seen her act so mean and unhappy

This is so terrible and I’m so depressed

Zman I’m sorry to hear your struggles. Am I correct that you’re still tapering? If so, what you’re experiencing is very normal. You’re not supposed to feel good….yet. The brain is adjusting and working hard to return to normal. Hang in there. Distract all day.

As far as you thinking your wife hates you…I seriously doubt it. She hates what has happened to you. It’s really hard on family and friends to watch us become a shell of who they know us to be. It’s also heartbreaking. They know they can’t do anything to help us so I’m sure they feel many things because of it. Might I suggest you have a calm sit down with her to reassure her that you’re still in there? Gently remind her that this isn’t easy for anyone and thank you for her support. Ask her what she’s feeling and together address it. I would hate to see someone else lose their marriage over this. We that are going through this barely understand it ourselves…imagine the people in our lives seeing it from the outside. Physically for the most part, we look fine. But, that’s ALL they can see. So, it’s not their fault for not understanding and getting frustrated too. Now, don’t get me wrong, I’m not condoning anyone’s non-supportive unloving behavior. Especially if it’s a spouse. They took vows to be there in sickness and in health. My point here is have a sit down with her. I’m sure she’s overwhelmed.

And yes that’s very weird that your symptoms took a backseat to the virus. Wow! Prayers going up that you feel better soon. Hang in there. You’ve been going through a lot. Getting a little down is expected. Just please do your best to engage in things that make you smile….even being bedridden. That’s what I did. I watched funny videos and comedy stand ups  :thumbsup: 

Have you seen Jeff Durnham with all the ventriloquist dummies? He’s hilarious! Old sit coms? Game shows that you can participate in like wheel of fortune, are you smarter than a 5th grader, millionaire, jeopardy, etc? The key is to keep your mind busy.  :thumbsup:

Sending you big virtual hugs!

 

Hey, by the way….you can order flowers to be delivered for your wife  ;) or have someone go get them from the grocery store florists. Perhaps just as a “peace offering or thanks for being there for me”.

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I hate to be so negative, I really do. I really wish I had better things to report or talk about. It makes me feel bad that I can’t be more encouraging to others and I also feel so selfish for being in “survival mode” non stop 24/7

 

It’s been 12 days and I’m still testing positive for Covid-19. The weirdest thing happened when I first came down with symptoms and a high fever 12 days ago, it was like my withdrawal symptoms almost vanished and the only problems that were happening were the fever and the body aches.

 

I’m not running a high fever anymore, and even though I still have a cough, it’s not terribly bad, but now the benzo s/x are back in a major way. My legs burn like they are dipped in fire. Anxiety is back bad. I’m still fully bedridden and only get up to use the toilet because I get so dizzy. My muscles… they say jelly legs…. Well my muscles have literally turned to jelly, despite me writhing around in pain constantly.

 

I’m not sure how much more I can take

Nothing helps

And I feel like my wife hates me

I have never seen her act so mean and unhappy

This is so terrible and I’m so depressed

 

Zman its ok to keep "complaining" (It more like reaching out) like this. You are in survival mode. You need to use the resources you got. I would rather hear you complain than get no post at all from you. I would hate to think you are holding back. It's kind of you as some people don't even look for the positive. But you are not that person. I have seen post from you that try to keep positive. There is no limit put on how many complains you do. You reach out until you are out of survival mode. When you have advice you give it. I have benefited from that.

 

Your wife sounds like she may be experiencing caretaker burn out. I also feel hated in my worst times. I am unmanageable. I would keep telling my partner that I was sorry, that I never wanted to be the cause of their pain. It didn't make me feel less hated, but I was able to validate what they were going through. We are not strong enough to do anything for our partners now. The best we can do is acknowledge it.

Is there someone who can step in for her for a day? I know people are hard to find and those people might not be able to read us or flow with us like our partners. You may be in too much pain now to think on it, but maybe that is something you can say you want to talk about later.

As we know there is no magic bullet and you know your situation best. The only thing I was able to do in my situation was validate their pain and tell them I see how much you do for me.

 

I know the nothing helps place. The only way I got through it was by being in pure survival mode and telling my partner I'm sorry for the pain, thank you for being there. Ignore everything else. You need to be single mindedly getting through the moment. Just keep existing.

 

I believe Lady Dens suggestion may help, but make sure you are in a safe place/moment to do so.

 

Keep posting whenever you need to. No one will fault you for it. I posted every day for a month before to get through. This is a lifeline.

 

Take one more step than you think you can. I love you, hang on.

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Zman I am so sorry you are suffering so much.  You are a good person your wife is just having a rough time right now and probably just doesn't know what to do.  Things will get better just hang on.

Sending you prayers ❤

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Thank you everyone for the kind and loving encouragement

I’m still feeling horrible… and trapped…. But having you all to talk to makes me feel like at least someone out there cares about me.

 

Tomorrow, somehow I will walk to the car and be driven to an endocrinologist for an appointment. I don’t know what to expect so I’m nervous not only about just getting out of the bed and being able to stand, but nervous about the dr. Never been to an endocrinologist before

 

The next day I see a cardiologist which is always scary… I’ve gone from heart rate way too high, to now heart rate way too low. I have cardiphobia as well.

 

I know how crazy I must sound but I’m feeling like I’m about to break.

All I want is to be normal again, even if that means just being able to get in a car and go somewhere with my wife and kids.

I’m on a desert island, alone, and I’m not a very tough guy… I’ve always been the reclusive shy introverted guy who backs down from fights, and this is a fight for me every minute of every day. I don’t feel like I’m winning. I feel like my body is giving in and breaking

 

Seems like the only times I have left the house or bed in the past 6 months or more has been to go to the dr.

 

It overstimulates me and then the pain is amplified ten fold

 

My stomach dr won’t do another appointment with me until 7 weeks have passed since I tested positive for Covid. Which sucks because my stomach is burning every time food passes into it,and I know from my last scope they did that I have erosion spots in my esophagus and upper stomach… that was September of last year and I’m so worried they have gotten worse. I know they have because I can feel it. It hurts so bad to eat now even though I have a normal appetite, every bite is like a battle.

 

Everything is pain at this point

 

I remember I used to have biceps but now I’m like Popeye without any spinach

My arms look like a little kids arms now to me and I’m used to being a big, husky 250+ pound guy

How could this have gotten so bad so fast…?

 

I went from Valium 10 only as needed, for 15 yrs…often skipping 4-5 days at a time even, to being on 2mg Xanax per day, only for four months…. then having a crisis and switching back over to just one 10mg Valium per day split between morning and night. You’d think I would have stabilized somewhat, because I’ve been holding and still holding  at 8mg per day now for 3 months…. That was my attempt at tapering down from the 10mg….No, I’m getting worse. I just feel so hopeless and I’m making everything and everyone around me a living hell. I can tell all they want to do is live and have fun and I’m stopping them.

I’ve never been this heartbroken in my life :( I tried so hard to cry and it felt like I was faking it which makes no sense. Everything is a wave now, ever since I got my molars extracted extracted a month ago (the sockets still are not completely healed) I just can’t take it anymore and I need someone to help me learn to walk and stand again. I feel doomed. God in heaven please show me mercy. I never did this to party or get high. It feels so unfair. I feel like I’m gonna lose everything. I just want to be a good husband and dad and I feel like the Devil has me wrapped up in barbed wire, unable to do anything because something is wrong with everything. I’m so guilty of envying the ones on here who can walk or run or go on hikes…. I miss it so much. I miss just being able to walk into the bathroom to take a shower… Almighty God please help me

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Zman,

 

I haven't posted here in a long time, but I have been reading and keeping up with your story.  I just wanted to tell you how sorry I am that you are suffering so much!  I understand the health anxiety, I have tons of my own.  I have also lost lots of weight.  I get anxiety looking at myself in the mirror.  And I know how impossible it feels that we should ever get better.  But I do know that people in just as bad of a condition as yours have healed.  They didn't think they would heal either, but they did.  It's truly amazing how the body is able to transform itself.  It takes time, sometimes lots of it.  But keep the faith.  Keep reading the success stories and believe that you will be able to write your own someday. 

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zman, praying you'll feel better soon.  Let us know what tests you get at the docs and the results and any diagnoses.  If it's benzo-related, it's helps everyone.
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Zman I am so sorry that you are suffering so much.  I wish I knew what to say that would help you.  I can feel your pain my heart breaks for you.  Like Sage said the body can do wondrous things and I truly believe we will heal it just takes time and that is hard to handle.  Please hang on we are all right here with you.  I keep praying for you and everyone on here.

Love and prayers🙏🙏💕💕🙏

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Seems like the only times I have left the house or bed in the past 6 months or more has been to go to the dr.

 

It overstimulates me and then the pain is amplified ten fold

 

I understand this. I don't want to leave the house. It's too much just to get in a car. At the same time I am tired at looking at these walls. I want to be able to ride like a normal person and not fear the pain or a wave.

 

I’m on a desert island, alone, and I’m not a very tough guy… I’ve always been the reclusive shy introverted guy who backs down from fights, and this is a fight for me every minute of every day. I don’t feel like I’m winning. I feel like my body is giving in and breaking

 

I have thought similarly. I feel cut off from the world. This forum has been my small world. I don't want to fight. I want to stop fighting. In my mind I tell myself I am done, but my body keeps breathing, my body won't stop fighting. When my mind says quit, my body says no. In a way I am proud that my body is giving all it gots to push forward. But it feels God awful.

I just feel so hopeless and I’m making everything and everyone around me a living hell. I can tell all they want to do is live and have fun and I’m stopping them.

I’ve never been this heartbroken in my life :( I tried so hard to cry and it felt like I was faking it which makes no sense. Everything is a wave now, ever since I got my molars extracted extracted a month ago (the sockets still are not completely healed) I just can’t take it anymore and I need someone to help me learn to walk and stand again. I feel doomed. God in heaven please show me mercy. I never did this to party or get high. It feels so unfair. I feel like I’m gonna lose everything. I just want to be a good husband and dad and I feel like the Devil has me wrapped up in barbed wire, unable to do anything because something is wrong with everything. I’m so guilty of envying the ones on here who can walk or run or go on hikes…. I miss it so much. I miss just being able to walk into the bathroom to take a shower… Almighty God please help me

 

Hopeless is part of the process. But it is not permanent. In my symptoms journal I had my partner put hopeless and heartbroken as symptoms. There are no other words for it. I should have cried so many times, but I can't. We think about as soon as we are out of this we are going to spoil our loved ones crazy. It's what I keep think about if I ever get out of this. I don't want to hold my family back but I don't have control. I'm not fun to be around is an understatement. This is not what we wanted.

Even without hope we must go forward. There have been many times I have had no hope. I keep going because sometimes hope came back.

Sometimes, carrying on, just carrying on, is the superhuman achievement.

 

When I first got on here and saw that people were going to work in withdrawal, I was like who are these freaks of nature? (nothing against it. Some have no choice. But I was surprised)

 

 

 

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Stitch,  I know how you feel.  People who can work while having w/d symptoms are doing good.  I haven't worked in 10 years and will never work again.  My brain is so completely damaged and I'm scared.
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Love and virtual hugs to you all.

Wow I’ve been absent due to taking care of my sick child. I’ve caught up on your posts….wow you all are so wonderfully supportive. I’m so glad I’ve met all of you. I agree that Zman shouldn’t feel bad about posting how he’s feeling. That is what this forum is for! If we all felt great then we wouldn’t be here.  :thumbsup:

Zman I’m looking forward to hearing about how you accomplished your car ride to the doctor. I’m praying for you. I know how hard that is…I’ve just started trying to ride in the car again. Right now it isn’t going well. As someone said it revs us up because of having a highly sensitive CNS. It’s a lot to handle riding in a car. BUT, I have been in your shoes and I made it through just fine. And you will too. What I did was didn’t look out the windows. I picked something to look down at until I arrived. Perhaps you can try that.

 

I hope you all have a better day today.

 

:smitten: :smitten: :smitten: :smitten:

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I hate to be so negative, I really do. I really wish I had better things to report or talk about. It makes me feel bad that I can’t be more encouraging to others and I also feel so selfish for being in “survival mode” non stop 24/7

 

It’s been 12 days and I’m still testing positive for Covid-19. The weirdest thing happened when I first came down with symptoms and a high fever 12 days ago, it was like my withdrawal symptoms almost vanished and the only problems that were happening were the fever and the body aches.

 

I’m not running a high fever anymore, and even though I still have a cough, it’s not terribly bad, but now the benzo s/x are back in a major way. My legs burn like they are dipped in fire. Anxiety is back bad. I’m still fully bedridden and only get up to use the toilet because I get so dizzy. My muscles… they say jelly legs…. Well my muscles have literally turned to jelly, despite me writhing around in pain constantly.

 

I’m not sure how much more I can take

Nothing helps

And I feel like my wife hates me

I have never seen her act so mean and unhappy

This is so terrible and I’m so depressed

 

I'm so sorry for all that you're going through. I can definitely relate to how it makes you feel seeing the people around you suffering because of your suffering. It's just more pain piled on top of what you're already feeling. Sometimes I just start crying when I look at my kids' faces. And my poor wife. I hate it for her. She's having to bear such a huge load because of the condition I'm in. Praying for you, Zman.

 

I wanted to say, though, that you're not the only one who experienced this... The day I came down with COVID symptoms in January (they showed up in the evening), just like you, I had essentially zero symptoms outside of a couple anxiety twinges (my only "zero symptom" day in withdrawal). It allowed me to do some errands for my family who had already fallen ill. So there's something to that. And now I want to know what it is about being infected with COVID that can essentially remove our symptoms. It's very interesting, to say the least. Then my wd symptoms flooded back in and got worse for a time while I had COVID.

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Thanks everyone for your prayers. It honestly means so much to me just to know someone out there is thinking of me while I’m going through this.

 

Thursday I went to the endocrinologist and he ran a few tests via bloodwork.

My Vitamin D has raised from 7 to 25

I don’t have hypothyroidism or hyperthyroidism

And my A1c is 6 which is normal range which means I’m no longer diabetic, probably from all the weight loss.

Other things, like the nerve pain and muscle weakness, he said that would be stuff to talk to the neurologist about, which is a month away.

The trip there was not bad, I didn’t panic at all, even though I felt really out-of-body and had jelly legs really bad just walking from my bedroom to the car, and riding in the car was ok, even though it was super muggy outside and we have a broken air conditioner in our minivan. My body feels too weak to support itself standing or even sitting up. I gutted it out though…

 

Friday (yesterday) I left the house again for an appointment with a cardiologist. This was very scary to me since I have SEVERE cardiophobia, so the ride there was a little bit unnerving, but I did ok. We talked about what was going on, and I kind of got the feeling that he was only half listening to me since he mentioned a beta blocker, and my problem is LOW heart rate and low BP as of recently. Then he kinda realized his mistake when I flat out refused to ever take a beta blocker again because it being a beta blocker that really started my whole ordeal. So anyways, he suggested a 48 hr Holter monitor, which I am now wearing. I was a little nervous, but I got through the whole process ok and we stopped at Arbys to get some chicken nuggets on the way home… which hurt my stomach a lot. So that was leaving the house two days in a row… and not really experiencing and severe s/x besides a little bit of anxiety, because I have trouble meeting a new dr mainly because some of them have treated me mean in the past.

 

My pain level is about the same, and I’m going to try to take it easy today and watch movies  after all that stimuli the past two days.

 

The situational arguing with my wife has remained about the same. I told her how much I appreciate her help and her sticking with me, but it didn’t seem to phase her. She acts like she’s dealing with some depression issues herself, I think, or maybe just the stress of taking care of me. She’s not been her normal, loving, sweet self for a long time now, and it feeds into my fears of abandonment. We’ve been together 20 years, I’m sure we will find a way to work through it. I have a few plans to give her a “special day” every now and then with the help of the kids.

 

I’m testing negative for Covid now, also. Which is good news. I still have the GI doctor to deal with soon, to do another endoscopy to look at the erosion spots in my stomach and esophagus… pretty scared of that whole ordeal. They also want me to swallow a pill cam, which with the way I alternate between diarrhea and constipation, terrifies me that it will get stuck. :/

 

My sleep schedule is back to being completely erratic and it sucks because it was the only thing giving me any sort of window-type days.

 

 

Please continue to pray for me. I love you guys and I’m hoping that you all have a better day and possibly a good weekend, Lord willing.

 

God bless

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How is everyone today so far? Here for help, Stitch, DD, LadyDen and others, I hope you are feeling better and having at least a “5” on the bedbound scale. I would rate my day so far as a “3”

 

I woke up this morning with high bp, which is so weird because I’ve had low to normal bp since right before my Covid symptoms began. Now that I’m testing negative for Covid, my bp issues seem to be fluctuating around again… which of course scares me and triggers my cardiophobia, due to my Aortic aneurysm. The strangest thing was, I had been told to continue to hold off on my Lisinopril just three or four days ago due to low bp and now I had to go ahead and take one after three weeks (almost) of being off it. My bp at both dr visits the other day was darn near normal, one of them was a perfect 112/71…and now this hits me out of nowhere. Scares me and it’s depressing.

 

I’m also experiencing a new s/x which is monophobia- the fear of being left alone. I worry what will happen if something happens to me and nobody is around to help save me. This may sound a little juvenile, but it’s the only way I have to explain it. Intrusive thoughts maybe? I don’t know. It seems like every time I get it in my mind to try to get up and about or just go try to do something normal beside stare at these four walls, I get blindsided by a s/x like high bp or racing heart upon any exertion, or even the monophobia I mentioned…. Or just pure agonizing pain.

 

I try to not dwell on this stuff as it happens, but there is so much overwhelming me like scary stuff health-wise that it’s hard to not let it stack up on top of the benzo problem. I am still holding at around 8mg Valium per day, taken once around noon and once at night. I feel so stuck. After 16 years on this stuff, even if it was only used occasionally and as needed, it sure has done a number on me.

I begin to lose hope not that I can get off the stuff, because I could CT tomorrow if I wanted and be off it, but my hope wanes when I think about my body’s ability to deal with the amount of torture even coming down this far has caused me and how bad it could possibly get when I’m totally off it.

 

Yesterday I did some bed exercises, to the best of my ability. I think my body like my legs and muscles may actually be able to come back from this one day, but it’s my heart and stomach erosion stuff that really really has me scared…. It’s hard to distract from that kinda stuff when you know for sure it’s going on because you’ve been tested by 15 diff docs. 

 

I hate that I can’t share glimmers of hope like some do on here. I want to be one of those people so bad and be helpful. I’m trying. I care for you all deeply even though we’ve never even met, because we share a bond.

 

I really hope and pray that at least a few, if not all of you are having some improvements today.

 

Love you guys and God bless you, I hope each one of you finds either a great day or at least some peaceful moments today.

 

-Zach

 

 

 

 

 

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I cant handle stimulation of any sort.

 

Light, sound, touch, movement, stress. lying in bed isnt even comforting to be honest but its the where i suffer the least but i still suffer non the less.

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I cant handle stimulation of any sort.

 

Light, sound, touch, movement, stress. lying in bed isnt even comforting to be honest but its the where i suffer the least but i still suffer non the less.

 

I’m sorry you are feeling so badly. I totally know what you mean when you say lying in bed isn’t even comforting. I feel trapped in mine. I hope you see improvements soon, plad

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Zman

 

How is everyone today so far? Here for help, Stitch, DD, LadyDen and others, I hope you are feeling better and having at least a “5” on the bedbound scale. I would rate my day so far as a “3”

This made me smile because I rate myself every day. I'm sorry you are in a 3. You've been through a lot as of recent.

I'm sorry your wife is still upset. It didn't really change anything for me. But I think it is good to let them know. In WD it has been a painful realization that I can not control how people feel. I knew that before, but this is a different level. Before I could say more and do more. Now it's up to the people around me. I'm still coming to terms with it and how WD has changed my relationships.

 

I understand monophobia. It's one of those things that if it's not there, lingers in the back of your mind. It's like you want to grab a hold of these people because you feel alone and scared. But you know clinging to them will just overwhelm them so you do your best to find a balance. Even when it doesn't feel like there is any balance. I don't know what is in my head or what is real. People can be pretty tight lipped around me so I can only guess what they are thinking.

 

 

I hate that I can’t share glimmers of hope like some do on here. I want to be one of those people so bad and be helpful. I’m trying. I care for you all deeply even though we’ve never even met, because we share a bond.

 

You are. Really. You think you aren't because all this bad is happening and you feel you have nothing to give. I know that feeling. I just like seeing your post. I think this guy gets it. He's right, it is hard. He states his worries and fears and how he is feeling. It makes me root for you. Which lets me root for me. You just telling me to hang in there means so much. It means someone out there is listening. We share the same journey. I hate that it's this one but I am so thankful I'm not alone.

My sleep schedule is back to being completely erratic and it sucks because it was the only thing giving me any sort of window-type days.

I feel you. I would like to sleep 10 hours straight please.

 

but it’s my heart and stomach erosion stuff that really really has me scared…. It’s hard to distract from that kinda stuff when you know for sure it’s going on because you’ve been tested by 15 diff docs.

Hugs. I feel that. That hit me. Like looking the devil in the face. Know that my hand is in yours as we go forward.

 

 

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I cant handle stimulation of any sort.

 

Light, sound, touch, movement, stress. lying in bed isnt even comforting to be honest but its the where i suffer the least but i still suffer non the less.

I am asked, Do you feel better. I say, no I feel in less pain. For now that will have to be enough. It is my safe place and my prison. But I am glad I have a place to hunker down. We will wait for the storm to pass. Hang on.

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I can't wait too long unfortunately. Im not gonna watch my life fall apart in front of me and also watch other people see me suffer. Im going to try to go back into society and function or pretend to. if i fail then atleast i know i gave it a try and i can gove up knowing i tried
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Hello everyone,

Zman, Stitch, Plad... I am so sorry for all of your discomfort. 

Zman from what I have read on here it seems that BP issues are common in benzo wd but I know that doesn't make it any less scary.  I am so sorry that you are suffering with monophobia I hope it passes quickly.  Do you watch Jennifer Swans videos?  She just did a couple on benzo OCD she talks about some techniques that I am finding useful in trying to manage ruminating.  I'm glad you were able to do some bed exercises I believe that when you are healed from this poison you will be better then ever.

 

Plad stimulation is definitely a hard symptom to deal with and hard to stay away from.  I am so sorry you are dealing with this.

 

Stitch you and Zman are always encouraging others even though you are both struggling so hard I appreciate you both so much.  When I'm feeling bad I have such a hard time being positive.

 

Sending prayers and hugs🙏💕🙏

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I can't wait too long unfortunately. Im not gonna watch my life fall apart in front of me and also watch other people see me suffer. Im going to try to go back into society and function or pretend to. if i fail then atleast i know i gave it a try and i can gove up knowing i tried

Give yourself 6 months. I know that sounds like a long time but a lot of people see changes by then. Honestly I would at least make it another month or two. In my first two months even water gave me reactions. I am really impressed that you can think of going out into society. But I would avoid the stress for now if you at all can. Added stress can make symptoms harder. I avoided looking out my window because sunsets scared the ever loving $h!t out of me for a few months. It was just better for me not to look.

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Thanks everyone for your prayers. It honestly means so much to me just to know someone out there is thinking of me while I’m going through this.

 

Thursday I went to the endocrinologist and he ran a few tests via bloodwork.

My Vitamin D has raised from 7 to 25

I don’t have hypothyroidism or hyperthyroidism

And my A1c is 6 which is normal range which means I’m no longer diabetic, probably from all the weight loss.

Other things, like the nerve pain and muscle weakness, he said that would be stuff to talk to the neurologist about, which is a month away.

The trip there was not bad, I didn’t panic at all, even though I felt really out-of-body and had jelly legs really bad just walking from my bedroom to the car, and riding in the car was ok, even though it was super muggy outside and we have a broken air conditioner in our minivan. My body feels too weak to support itself standing or even sitting up. I gutted it out though…

 

Friday (yesterday) I left the house again for an appointment with a cardiologist. This was very scary to me since I have SEVERE cardiophobia, so the ride there was a little bit unnerving, but I did ok. We talked about what was going on, and I kind of got the feeling that he was only half listening to me since he mentioned a beta blocker, and my problem is LOW heart rate and low BP as of recently. Then he kinda realized his mistake when I flat out refused to ever take a beta blocker again because it being a beta blocker that really started my whole ordeal. So anyways, he suggested a 48 hr Holter monitor, which I am now wearing. I was a little nervous, but I got through the whole process ok and we stopped at Arbys to get some chicken nuggets on the way home… which hurt my stomach a lot. So that was leaving the house two days in a row… and not really experiencing and severe s/x besides a little bit of anxiety, because I have trouble meeting a new dr mainly because some of them have treated me mean in the past.

 

My pain level is about the same, and I’m going to try to take it easy today and watch movies  after all that stimuli the past two days.

 

The situational arguing with my wife has remained about the same. I told her how much I appreciate her help and her sticking with me, but it didn’t seem to phase her. She acts like she’s dealing with some depression issues herself, I think, or maybe just the stress of taking care of me. She’s not been her normal, loving, sweet self for a long time now, and it feeds into my fears of abandonment. We’ve been together 20 years, I’m sure we will find a way to work through it. I have a few plans to give her a “special day” every now and then with the help of the kids.

 

I’m testing negative for Covid now, also. Which is good news. I still have the GI doctor to deal with soon, to do another endoscopy to look at the erosion spots in my stomach and esophagus… pretty scared of that whole ordeal. They also want me to swallow a pill cam, which with the way I alternate between diarrhea and constipation, terrifies me that it will get stuck. :/

 

My sleep schedule is back to being completely erratic and it sucks because it was the only thing giving me any sort of window-type days.

 

 

Please continue to pray for me. I love you guys and I’m hoping that you all have a better day and possibly a good weekend, Lord willing.

 

God bless

Blessings to you too. This is a very encouraging yet great report. I’m not surprised that everything came back basically normal. This is common occurrence in this journey. But that’s good news to have the solid confirmation that it is WD and only time will heal it. I’m so proud of you for being brave. You did very well my friend. At least now you know that if you have to go somewhere then you can get through it. Way to go!

I’m also trying to do the same…push through.

As far as your wife I’m sorry that she isn’t being her loving self. I think a date maybe once a week is ideal…even if you have to do it at home. I’m praying that she comes around back to her old self soon. Sounds like you’re doing your best. That’s all you can do. So hang in there. Time is on our sides!  :thumbsup:

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