~~The Bedridden Club~~

[[Di...]]

Hey Stitch,

You are welcome.  I am so glad you had a window they give us hope.

 

I don't really know if windows get better after waves hopefully others can shed some light on this.  I do know that my symptoms pattern changed after I went through a very stressful time a few months back.  I don't like this change I got. 

 

Wish I had some good answers.

 

 

[[Th...]]

Thank you Dianedeedee.

 

rant, no need to reply.

I am so tired of being stuck in my room and being on my laptop all the time. I wish I didn't have anhedonia so I could draw or something.

 

 

Sorry. Just really feeling it today.

[[Di...]]

Thank you Dianedeedee.

 

rant, no need to reply.

I am so tired of being stuck in my room and being on my laptop all the time. I wish I didn't have anhedonia so I could draw or something.

 

 

Sorry. Just really feeling it today.

 

[[La...]]

Hugs to Dianne, Stitch, Zman and everyone!

As far as my waves….my windows do get better after I have a period of tougher waves. And my windows became longer. It seems I’ve had a shift as well. I’m now feeling decent for a few days in a row then feel not so good for a couple of days. VERY different than last month. I’m loving it. It means healing is happening more. I can’t believe that I’m almost 2 years out. Wow! I’m the same as you all with my main symptoms…I’m utterly annoyed by them. I’m so ready for them to leave for good.

I’m so glad to experience for myself that it does get better. My journey of healing has been a slow but gradual progress. I’m ok with that as long as I DO recover fully. I just wanted to put that hope out there to anyone who has been bitten by the “ doubting bug”. This is a crazy recovery with even having doubt of healing is a symptom. But it’s a lie! I’m living proof. Don’t lose hope. Whether you believe in your healing or not, it will happen anyway 

My love and hugs to all of you…..

Get out of that bed as much as you can. Even if it’s just 5 minutes.

[[Di...]]

Hello everyone,

This thread has gotten quiet how is everyone doing?  Just wanted to check on all of you.

Hugs❤

[[Th...]]

Hi Diane

 

My hope comes and goes. Was feeling hopeful then caught a bad cold and though recovered for the most part, mentally I think I was shaken and lost some of that hope.

 

Yes Lady Den, I do hate the doubtbug. I can't tell if I am being realistic to prepare myself for the worst, or pessimistic. But I think I feel better when I have hope.

[[Di...]]

Hi Stitch,

Hang in there you wil get your hope back don't give up.  When you feel bad from being sick it just makes everything worse.  I am so glad you are pretty much over your cold.

Hugs and prayers 💕

 

[[La...]]

Morning hugs to Stitch and Dianne! 

Stitch I understand how you feel. This is not called a roller coaster for nothing, right? When on a roller coaster before it starts, you see the ups and down twists and turns loops and straights. Seeing that, you know it’s going to be one hell of a ride. All kinds of emotions take turns flooding the mind. And just when it takes over you, you decide you changed your mind  but too late…it’s starting now. Good thing for the safety straps! As it goes on it’s specified path you just pray that it’s quick. When you can’t take anymore, it smooths out going straight to give you a little break. A couple of more crazy loops or turns then it smooths out for the last time and comes to a gentle stop. You get off and kiss the ground!  Unbelieving you survived that wild ride.  That’s how this is! A roller coaster is a perfect description. I said all that to remind you that you’ll come out of that loop very soon. One of those loops is your last one.  So hold on dear warrior….hold on! Have you ever seen a roller coaster with a forever loop? Nope!  And thank God!!!! And just like others on the roller coaster with you…you are not alone and not the only one having a hell of a ride. All the people on that coaster can relate. So here’s a big hug of encouragement to you my dearest. 

 

Dianne I’m praying for you too. You are so right that when you feel bad it makes things worse. When it rains, it has no respect of person. It rains on everyone and everything. Losing hope is like rain. The body will follow.you’re very kind to remind us of that. But even if we lose hope or doubt our healing, it will happen anyway as long as we don’t reinstate. It’s an ugly journey filled with very long days months and even a couple of years. But many buddies have gone before us to light the way. As proof that we DO heal regardless of what our minds try to convince us of. It’s like a child not wanting to grow up. They can sit there and refuse to grow up but it will happen anyway. When we feel really bad in these waves, it’s easy to lose hope and doubt we’ll ever get better. I’ve even felt like this is the best I’ll get….that’s just not true. Do you know that thinking that way is also a symptom? Those pills spared nothing in our brains. They really did a number on us. Thank God that it isn’t permanent! HalleluYAH! So, we look at the evidence by using how far we’ve come with improvements then we see the truth. The truth will MAKE us free! Our truth right now is that we are not recovered yet but we ARE getting there with each passing day. Whether we believe it or not, it will happen. So, I chose to believe it because there’s too much evidence that it’s true.  In this recovery, we have to keep our sword ⚔️ out to fight off those lies. The thing about a lie is this…..it requires much work and fuel to look like it’s true.  The truth needs nothing for it is what it is.

[[Th...]]

Lady den,

Always glad to see a post from you

 

How is everyone right now? Check in?

 

Haven't heard from Zman for a while. Zman how are you holding up?

[[Di...]]

Hi everyone,

Ladyden thank you for that message you do such a great job of reassuring us.  Appreciate you so much.

Hope you are doing better.

 

Stitch I hope things are getting better for you too.

 

Hugs and prayers ❤

[[...]]

I am not doing so well, unfortunately. I have been having periods of small windows followed by huge waves and I am still not able to get out of bed very much at all… only enough to use the bathroom. My dr ordered a recheck of my vitamin d level and it was only 7 this time. Normal is 30-50….I’ve been taking supplements since I found out it was that low… hopefully it will come up because I know that is where a lot of my weakness and pain is coming from. It’s been raining the past few days and the pain in my bones is so bad that I want to cry. My muscles are twitching all over and this morning I had a insanely huge spasm of all the muscles on my left side rib cage… it lasted for like an entire ten minutes with residual twitches and pains all day. I also think I might be losing some hair. Male pattern baldness doesn’t run in my family in the slightest but I noticed some of mine is thinning and going away. I’m 47 so that may be normal or maybe the low vitamin d deficiency. Who knows. Taper wise, I am still holding at about 8mg of Valium a day, with the occasional 2.5mg of Vicodin if the pain gets excruciating. My 20 year wedding anniversary is tomorrow and I’m like this, and I just feel like it’s not fair to my wife who has loved me and stuck through thick and thin with me to have to spend a momentous occasion like this, taking care of me. I feel terrible and I just want Jesus to heal me or at least make it tolerable so I can keep on fighting the good fight. I’m so sorry that I don’t have any good news or encouraging remarks about my progress, truth is, I’m in the worst spot I’ve ever been in. Continue to pray for me, please. I pray for all of you every time this forum crosses my mind. I hope you all can find some moments of peace and strength. Love you all and God bless

 

Z

[[Th...]]

Zman I am glad to hear from you. You have been on my mind.

I am sorry you are in such a horrible spot! I also understand the guilt. I have a partner who has stood by me and it's hard to be this sick and not be able to do more. I hate special days because it is so hard in WD. Our partners are really something. You and your wife deserve better than all of this. I pray for the rain to go away. I pray for a big window for you. Keep hanging in there. I hope my wish for you to beat this is heard by the universe and you get relief soon.

 

Much love,

 

Stitch

[[Di...]]

Oh Zman I am so very sorry you are suffering so much.  It just breaks my heart for you.  I've been feeling pretty sorry for myself but your pain is much worse than mine.  I hope your vitamin D level raises as quickly as possible I'm sure you will feel better.  I know its hard for you but if you could get out and sit or lay in the sun that would help too.  Your wife knows how sick you are and one of these days you will be celebrating with her.

I'm keeping you in my prayers everyday.

Sending you hugs. ❤

[[La...]]

Sending hugs and healing wishes to you all. I’m doing fine. Mild waves and windows. Up walking around a few times a day.

[[...]]

Thank you everyone, God bless you

[[La...]]

I am not doing so well, unfortunately. I have been having periods of small windows followed by huge waves and I am still not able to get out of bed very much at all… only enough to use the bathroom. My dr ordered a recheck of my vitamin d level and it was only 7 this time. Normal is 30-50….I’ve been taking supplements since I found out it was that low… hopefully it will come up because I know that is where a lot of my weakness and pain is coming from. It’s been raining the past few days and the pain in my bones is so bad that I want to cry. My muscles are twitching all over and this morning I had a insanely huge spasm of all the muscles on my left side rib cage… it lasted for like an entire ten minutes with residual twitches and pains all day. I also think I might be losing some hair. Male pattern baldness doesn’t run in my family in the slightest but I noticed some of mine is thinning and going away. I’m 47 so that may be normal or maybe the low vitamin d deficiency. Who knows. Taper wise, I am still holding at about 8mg of Valium a day, with the occasional 2.5mg of Vicodin if the pain gets excruciating. My 20 year wedding anniversary is tomorrow and I’m like this, and I just feel like it’s not fair to my wife who has loved me and stuck through thick and thin with me to have to spend a momentous occasion like this, taking care of me. I feel terrible and I just want Jesus to heal me or at least make it tolerable so I can keep on fighting the good fight. I’m so sorry that I don’t have any good news or encouraging remarks about my progress, truth is, I’m in the worst spot I’ve ever been in. Continue to pray for me, please. I pray for all of you every time this forum crosses my mind. I hope you all can find some moments of peace and strength. Love you all and God bless

 

Z

Zman I hope your anniversary was good. I know all you could do was make the best of your situation. I understand that you feel not so good about being sick at your 20 year anniversary but please don’t feel too bad. It isn’t your fault. I totally get it because I felt the same when mine came around although my marriage was pretty much over anyway. A part of me wanted that last one to be special…as a goodbye but it was the worst one in all the 28 years. One thing you can do is speak with your wife and tell her that you’ll make it up to her when you’re feeling better. She knows what you’re going through. You are doing your best. Be encouraged.  I also had thinning hair. In your case it may be a combination of age and coming off the meds. Either way, it is unsettling and makes us self conscious. All I did was accept it and not let it take root mentally as something else to stress over. One thing about hair…it will grow. This was a hard fight for me because I’m a woman. I ended up with very thin scraggly but long hair. So thin that it’s see through. It stopped shedding and is now growing new hair. Over time our hair will replenish. Thank God!

The muscle issues are also common. These pills have muscle relaxers properties. When coming off there’s a rebound effect. Rest assured that over time, the cramps/spasms will lessen and then disappear. They might come back a time or two but much milder and shorter visit….basically just annoyances. That’s what mine are now….mild and annoying. You’re still tapering so it’s ok to not feel so well. But you are doing a good job. I’m proud of your progress. Please remain steadfast and keep your goal in mind. This isn’t easy, but I have faith in you that you will succeed in getting off. You are in my prayer, my friend. God has got you! Every day! That’s your Rock….

Big hugs and healing wishes.

Btw the windows are a good sign 

[[...]]

Thank you for all your supportiveness, LadyDen, (and everyone)  I hope you are felling well today.

 

Happy Easter, everyone

May God bless each and every one of us.

[[...]]

Dentist appointment today at 3pm to get tooth extracted… scared half to death. Please pray for me to make it through this. I pray I can even make it out of bed and to the car, I’m so weak. I’ll be asking for the carbocane instead of the lidocaine to avoid epinephrine.

[[La...]]

🙏🙏🙏 zman very wise to avoid lidocaine. Sending you best wishes on your procedure. While there use your calming breathing techniques. I’ll be waiting to hear from you my friend. Blessings to you.

[[Th...]]

Dentist appointment today at 3pm to get tooth extracted… scared half to death. Please pray for me to make it through this. I pray I can even make it out of bed and to the car, I’m so weak. I’ll be asking for the carbocane instead of the lidocaine to avoid epinephrine.

I will pray for you. I know just getting somewhere is a feat in itself. I pray for your procedure to go smoothly and for all to be well after.

[[Di...]]

Hello everyone,

Zman I'm praying your dentist appointment went well.

 

Lady so glad you are doing better.

 

Stitch I hope you doing better.

 

Hugs and prayers ❤

[[...]]

I successfully got to the car and to the dentist even though my legs were wobbling and heartb pounding. I sat in the dentist’s chair and she did x-rays, examined my teeth, etc. While waiting for her to come into the room, I started feeling breathless and having a major panic attack, but I was able to make it stop on my own within a few min. She said I have to be on an antibiotic for a week before she will try to extract the tooth. I made her give me Amoxicillin  instead of one of the bad ones like the flouoquolines or however you spell it. So at least I was able to get up and go, even though they didn’t really do anything and I have to come back next week.She did say that they definitely have stuff without epinephrine in it. We returned home and I was ok for the most part, but a little shaken. My legs and back hurt bad from not being able to move much and forcing myself to do so. I have pain medicine for that.  I go back next week on Thursday. Now I have to prepare myself for a visit with family dr. Day after tomorrow (Friday) I really hope my Vitamin D has raised higher than 7, which is what I was at.  love you all and thank you for your encouraging words.

[[La...]]

Hugs to you Dianne and Zman. Wonderful to hear from you. I pray all is well on your end. As well as it can be under the circumstances of recovering from this ordeal. I hope you are filling your day with things you enjoy including self care and love. It’s important that we give ourselves something each day that makes us happy. We get a lot of rough times so those little joys add up also serve as a reminder that all is NOT lost. We are still in there amongst all this crazy roller coaster symptoms. The process doesn’t feel good…stuck in bed against our wills sometimes but….we persevere because it is temporary! I’m 22 months today! Wooo hooo! As usual I’m experiencing my “ turned another month” wave as I do each month. It sucks but I’m going to celebrate as best as I can. We have to just push through this madness. Having said that….

Zman I’m so proud of you! You did a great job at the dentist. And you did the right thing making sure you wasn’t given any fluoroquinoline antibiotics. I’m sure you will do just as well on Friday and the next dental visit. This is a big deal because it can give you the much needed confidence that you will make it through with minor upticks that in most instances will settle down with a bit of rest when you get home. 

 

We are warriors for sure! Sending happy healing vibes to you both with love and prayers. ❤️🙏

[[Th...]]

Zman, you really were a trooper. You got there and back. Exhaustion doesn't even begin to cover it. I had to leave the waiting room before and for someone to drag me back to the car, so  I understand how these trips can be ordeals and tribulations. You may not feel it, but I was impressed. Not only did you get in and out, you were able to to take charge so you could ensure a good procedure. By the time I get somewhere I don't feel like I have the energy to advocate for myself. Good job!

 

I'm at a 7 at Vitamin D. I didn't really think about it because of all the other symptoms. Is it something to worry about? At any rate I do hope your's increased.

 

[[ho...]]

Hi my friends - Yes, I just disappeared again.  So sorry.  I just disconnected.  I get like this and I don’t know why.  I am even struggling with my friends and family too.  Ugh. 

 

Hopefully I will “try” to be engaged.  I am going to be working on this! Trying.

 

Life has been pretty good.  I am able to do things on and off, but I do spend a lot of time on the couch still.  Symptoms are just all over the place.

 

Lady- I’m so happy to see that you are improving, 

Diane and I have PM’d

 

To those who I don’t know…HI! And to other BB;s Hi too!  Miss you all 

 

Marie