Struggling to maintain hope

[[Re...]]

 

I am struggling to maintain hope.

In September, I will be off benzos for 24 months, and I recently passed the one-year mark off Quietepine given for sleep during benzo withdrawal, which some of you know was a horrific experience for me and only made me worse. Since May, I've been unhoused and am now on food stamps after a relative threw me out of their home, where I was living while dealing with all of this, even though they witnessed and understood my health condition. I'm scrambling to find housing for at least a year so I can continue to recover and hopefully find some work from home. I really wish there were resources for patients going through this -- financial and otherwise to help those of us who find ourselves losing everything.

Cognitively, I'm doing okay, not back to normal 100 percent but nobody knows from talking to me what happened. But physically, I'm beyond struggling. I've had a frozen shoulder for nine months now. I still have constant tinnitus, sound sensitivity, skin burning, jaw pain, visual symptoms, and more. When will it get better? When is enough enough? I'm sorry, but I'm at my wits' end almost every day for nearly two years now. I've been in extreme pain every single day for two years straight, which of course, takes a toll mentally. Last night, I woke up multiple times feeling like I was going to pace again, after not experiencing severe akathisia for seven months. I was terrified and alone with my pet who has been by my side through this. I feel so bad for my pet. I can't imagine how those of you with kids do it.

I don't take anything—absolutely nothing, not even a vitamin. I drink water, eat organic food, stretch and engage in light walking daily. I speak with other patients like me who have healed and are in the process of healing. I speak honestly with the friends who have stayed by my side through this.

One thing that scares me (please, no horror stories) is that I still have an IUD in place. I've chosen to leave it because it tapers itself, but I'm not entirely convinced it isn't complicating things, especially now that I understand more about prescription drugs and hormones. But if this gradual tapering it is supposedly doing is making me have flairs, imagine if I took it out now. Not going to even try.

I tell myself success stories every day, but the stories of those we lose to this haunt me too. Things aren't improving, and I live in pain and misery 24/7. Frankly, the frozen shoulder feels like the last straw after dealing with akathisia—it can take up to three years to recover from it, and I used to work out five days a week. It's a medical mystery similar to benzo withdrawal -- you can wake up one day and it's gone. Doctors don't know why it happens. Someone else who has it from this told me it is autoimmune-related. I am so tired of researching, I am not even going to go down that rabbit hole.

There is nothing to do -- no treatment or drug to take -- just time to wait and waste. How sad of a life when time is so precious. And apparently, I am recovering faster than most according to the people who I know who have recovered from this. I don't know how to find acceptance in this unacceptable physical situation.

Some people around me know what I have been through and have compassion but nobody knows like you all do.

There is nothing to say. I needed to post. I am sorry if this scares anyone new, but this is my reality and the reality of some of us who are less fortunate going through this. I welcome any supportive comments.

 

[[Th...]]

@[Re...]
I sympathize with you more than you know. I’m 11 months in 2 days and unfortunately feel very little progress physically. Anxiety comes and goes in waves but physically I suffer daily. Muscle twitching 24/7, stiffness and pain throughout. Every month I’m hoping for some improvement but it’s hard to see. I decided to take a break from BB for a month or two just to try to give myself a mental break. 
 

Hopefully you can try to embrace the little wins daily or do small simple things that you enjoy. I know how hard it is and I try to keep telling myself positive things instead of self hate and pity. 

Edited July 25 by [Th...]
Spelling

[[So...]]

Me too Rebecca, me too... seems we are both at a rough patch in recovery.  I sent you a message ❤️. Stay strong please, so good you have your mind back, that is half the battle for sure

[[Re...]]

18 hours ago, [[T...] said:

@[Re...]
I sympathize with you more than you know. I’m 11 months in 2 days and unfortunately feel very little progress physically. Anxiety comes and goes in waves but physically I suffer daily. Muscle twitching 24/7, stiffness and pain throughout. Every month I’m hoping for some improvement but it’s hard to see. I decided to take a break from BB for a month or two just to try to give myself a mental break. 
 

Hopefully you can try to embrace the little wins daily or do small simple things that you enjoy. I know how hard it is and I try to keep telling myself positive things instead of self hate and pity. 

I am so sorry to hear what you are going through. I don't have much enjoyment - some few and-far-between moments. I am grateful for some things. But it is hard to feel gratitude being in pain.

[[Re...]]

17 hours ago, [[S...] said:

Me too Rebecca, me too... seems we are both at a rough patch in recovery.  I sent you a message ❤️. Stay strong please, so good you have your mind back, that is half the battle for sure

Are you off now?? I hope so.

[[So...]]

Oh I am off benzos for a year, yes. 

 

I still am at 1mg mirt and 2.4mg Celexa.  Been holding 3 months.  The next window I have open up tho I will taper again, I just can't risk it right now. If I am stable I will again or I probably will taper anyways the end of summer if I don't see improvement, trying to give my body a break tho, I have went super super hard the past 1.5 years and I'm tired 🥹

[[Re...]]

5 hours ago, [[S...] said:

Oh I am off benzos for a year, yes. 

I still am at 1mg mirt and 2.4mg Celexa.  Been holding 3 months.  The next window I have open up tho I will taper again, I just can't risk it right now. If I am stable I will again or I probably will taper anyways the end of summer if I don't see improvement, trying to give my body a break tho, I have went super super hard the past 1.5 years and I'm tired 🥹

Yeah, you did. I am glad to hear you are having windows. I wish I would have one. I know the grass is always greener on the other side.

[[So...]]

Oh they are not full windows @[Re...] I've never had a full window... best I've gotten in one is 70% id say!!

[[Bu...]]

On 24/07/2024 at 21:32, [[R...] said:

I am struggling to maintain hope.

In September, I will be off benzos for 24 months, and I recently passed the one-year mark off Quietepine given for sleep during benzo withdrawal, which some of you know was a horrific experience for me and only made me worse. Since May, I've been unhoused and am now on food stamps after a relative threw me out of their home, where I was living while dealing with all of this, even though they witnessed and understood my health condition. I'm scrambling to find housing for at least a year so I can continue to recover and hopefully find some work from home. I really wish there were resources for patients going through this -- financial and otherwise to help those of us who find ourselves losing everything.

Cognitively, I'm doing okay, not back to normal 100 percent but nobody knows from talking to me what happened. But physically, I'm beyond struggling. I've had a frozen shoulder for nine months now. I still have constant tinnitus, sound sensitivity, skin burning, jaw pain, visual symptoms, and more. When will it get better? When is enough enough? I'm sorry, but I'm at my wits' end almost every day for nearly two years now. I've been in extreme pain every single day for two years straight, which of course, takes a toll mentally. Last night, I woke up multiple times feeling like I was going to pace again, after not experiencing severe akathisia for seven months. I was terrified and alone with my pet who has been by my side through this. I feel so bad for my pet. I can't imagine how those of you with kids do it.

I don't take anything—absolutely nothing, not even a vitamin. I drink water, eat organic food, stretch and engage in light walking daily. I speak with other patients like me who have healed and are in the process of healing. I speak honestly with the friends who have stayed by my side through this.

One thing that scares me (please, no horror stories) is that I still have an IUD in place. I've chosen to leave it because it tapers itself, but I'm not entirely convinced it isn't complicating things, especially now that I understand more about prescription drugs and hormones. But if this gradual tapering it is supposedly doing is making me have flairs, imagine if I took it out now. Not going to even try.

I tell myself success stories every day, but the stories of those we lose to this haunt me too. Things aren't improving, and I live in pain and misery 24/7. Frankly, the frozen shoulder feels like the last straw after dealing with akathisia—it can take up to three years to recover from it, and I used to work out five days a week. It's a medical mystery similar to benzo withdrawal -- you can wake up one day and it's gone. Doctors don't know why it happens. Someone else who has it from this told me it is autoimmune-related. I am so tired of researching, I am not even going to go down that rabbit hole.

There is nothing to do -- no treatment or drug to take -- just time to wait and waste. How sad of a life when time is so precious. And apparently, I am recovering faster than most according to the people who I know who have recovered from this. I don't know how to find acceptance in this unacceptable physical situation.

Some people around me know what I have been through and have compassion but nobody knows like you all do.

There is nothing to say. I needed to post. I am sorry if this scares anyone new, but this is my reality and the reality of some of us who are less fortunate going through this. I welcome any supportive comments.

I’m not on your situation, but hoping my words might help.

frozen shoulders aren’t painful for the whole time, usually after some time in the initial pain phase you will end up with just stiffness and no pain. Pain for three whole years is very unlikely. This should be nothing like the horror of akathisia (only had it a few times this week but by god I don’t want it again) 

I think you are doing much better than you give yourself credit for

the very fact you are surviving, and can  travel between houses/places and look after a pet and organise yourself to get food to keep you going is positive. Your mind and body are keeping you going and you have the strength and will to survive. 

I’m bedridden and disabled with a combo of long covid and Benzo withdrawal with many of your symptoms. I’m too weak to survive without a carer and have a daughter. I’m only a few weeks in so am trying to assume things will get easier soon as the withdrawal progresses. 

This is such a horrible condition for all of us

I know you can’t work out anymore but are you still able to get pleasure from your pet? 
 

is there anything at all else cheap you can think of to do to replace going to the gym in order to entertain yourself and distract from your pain? Art, writing stories, sewing? Reading? Sorry if you have already thought of all those things. 

 

Sending best wishes for you 

 

 

 

[[Re...]]

@[Bu...] I was housebound/bedbound for many months. So I understand what that is like. For the first six months an hour seemed like a year. I may have had Covid as a contributing factor. I don't know if I had it or not but I did get vaccines stupidly. Obviously, not after this experience. Never again.

I was forced to be "physically able" to move to survive and not end up on the streets. Most of the time I stay home and don't go out and have to rest in between activities at home. I get everything delivered. Could you say I'm "better"? I suppose so.

But certainly riddled with more trauma than ever before and more issues than I can count. Money would solve my problem because I could rent a place to live. Since I haven't worked, landlords won't accept my application. I appreciate what you said about the FS. It pulls on my neck and jaw. Some people only have it on one arm. I also have it a little on the left side too. I am getting A LOT of crackling noises which I hear are signs of thawing??

[[Bu...]]

13 hours ago, [[R...] said:

@[Bu...] I was housebound/bedbound for many months. So I understand what that is like. For the first six months an hour seemed like a year. I may have had Covid as a contributing factor. I don't know if I had it or not but I did get vaccines stupidly. Obviously, not after this experience. Never again.

I was forced to be "physically able" to move to survive and not end up on the streets. Most of the time I stay home and don't go out and have to rest in between activities at home. I get everything delivered. Could you say I'm "better"? I suppose so.

But certainly riddled with more trauma than ever before and more issues than I can count. Money would solve my problem because I could rent a place to live. Since I haven't worked, landlords won't accept my application. I appreciate what you said about the FS. It pulls on my neck and jaw. Some people only have it on one arm. I also have it a little on the left side too. I am getting A LOT of crackling noises which I hear are signs of thawing??

Hello Rebecca 

thanks for your empathy about being bedbound. I’m glad you are more functional now. It’s good to hear this could be possible for me within the next few months. 

Where are you? I’m in England and could potentially sign post you to resources RE frozen shoulder if you’re here. I’m not a physiotherapist- they are the experts on this (in England anyway). Most of the people I have seen with frozen shoulders only had significant pain for the first few months. I really hope it dies down for you soon. 
 

I could not be independent/ functional even if my life  depended on it. If my husband decided to leave me I genuinely don’t know what would happen to me. My body simply gets worse with every type of exercise big and small - it’s a part of the long covid fatigue. I miss housework a lot! Some days however are better than others. I managed to sit up and watch a whole TV show yesterday with my family - best window ever in terms of overstimulation and physical ability. 

im so sorry about your financial problems

i really hope you find a place to live - it must be so hard for you

best wishes

 

 

[[Re...]]

20 hours ago, [[B...] said:

Hello Rebecca 

thanks for your empathy about being bedbound. I’m glad you are more functional now. It’s good to hear this could be possible for me within the next few months. 

Where are you? I’m in England and could potentially sign post you to resources RE frozen shoulder if you’re here. I’m not a physiotherapist- they are the experts on this (in England anyway). Most of the people I have seen with frozen shoulders only had significant pain for the first few months. I really hope it dies down for you soon. 
 

I could not be independent/ functional even if my life  depended on it. If my husband decided to leave me I genuinely don’t know what would happen to me. My body simply gets worse with every type of exercise big and small - it’s a part of the long covid fatigue. I miss housework a lot! Some days however are better than others. I managed to sit up and watch a whole TV show yesterday with my family - best window ever in terms of overstimulation and physical ability. 

im so sorry about your financial problems

i really hope you find a place to live - it must be so hard for you

best wishes

Thank you @[Bu...]. I am in the US. I remember watching my first show after months -- well part of it at least. It was such a blessing. Every activity is a luxury now. I hope you start to turn a corner very soon. I hope we all do.