All alone

[[ne...]]

Hi,

 

This is my first post upon approval to this forum.  I am so glad to be here....I'm so sad to be here. I wish none of us were here as that means we are all suffering!

 

I was 'fortunate' enough to figure out that my doctor had put me on too many meds.  I ran across an after visit summary from January 2015 with a new pdoc that had a tapering plan. I don't remember how well I stayed with the plan or how fast it was. In August 2016 I took my last 0.25 slice of clonazapam. I was down to 0.25 on Monday and Thursday. Since that last slice, I was good for about a week. Then all hell broke loose.

 

I started having a lot of new illness, symptoms, and a auto immune disorder diagnosis since the start of the taper. In July 2015 I finally called my primary care doctor and told him I felt horrible. Low thyroid, 4 weeks later not better, blood work, increase thyroid meds. January 2016, lesion on chest, test for antibodies. Blood work is next to highest reading for antibodies, and test suggests Lupus, Drug Induced Lupus, or Sjogrens disease.  Other blood work showed no markers for any of those so I was given a diagnosis of Fibromyalgia.

 

I was given over 50 tests from Jan 2016 to June 2016. Doctors have been clueless and of little support. While in a nasty condition, i was referred to different specialists and each take around 7 weeks to see and they have offered little if any help or support.

 

During this time, I have told friends and family about what I've been dealing with and they have all abandoned me. They talk a good story, but there is no skin in the game. Even as recent as last week they asked what support would look like. I said to call and ask me how I'm doing, to really ask with interest and let me talk about what is going on even if it's the same story. Ask with interest. I've still heard nothing.  Friends who knew what I was dealing with and knew my goal was to just get in the shower even once per week and trying to get groceries seemed insurmountable.  Still, nothing.

 

I have to take care of myself and I've looked at grocery delivery but $40 for 2 meals isn't going to work over time. I'm even embarrassed /  fearful to open the door to the delivery person as I look like a homeless slob. I need to clean my home but when I look at one task, it's all overwhelming and I get nothing done. I decided to let it all go and maybe some day when I get on the other side of this, maybe I'll be resourceful enough to get someting done. I don't have a way to do laundry in my place and have to go to machines downstairs and that is all too much also right now.

 

I am almost certain after reading so many posts in this forum that I don't have an auto immune disorder but my symptoms are from benzo withdrawal. I know I'm not alone in the trite answers and platitudes being offered to fix me in 5 minutes. You all get it!!! It's happened to you. I've learned from some people in my life that "I'll pray for you" is a nice way to say 'good luck with that' again, no skin in the game.

 

I wish I were not here with you, but I'm glad we have each other as no one who hasn't walked this path will NEVER understand.

 

 

[[Da...]]

Hi nexttime, It sounds like my life story. I'm doing most of the same things you are. I'm sorry about the situation with your friends and family.

 

The thing I have learned in this process is that other people don't get it. They mean well but they can do harm. So I just don't talk to them about how I really feel, they don't believe it anyway so there is not much point. They definitely are never going to read or educate themselves. That is not going to happen. So what I have done is not talk about it to them. As little as possible and only if they ask me about it first. They expect me to be exactly the same person I have always been.

 

So I had got out a few times to spend time with friends. I went to lunch with a friend and then went out with him a few times. Yesterday he txted and told me I was never going to get off my sofa. I'm never going to improve. My problem with these statements is I think about that all the time. So I immediately start panic ing which just makes it worse. so it is hard and even if I try to explain it they don't get it.

 

So I try to keep up with current issues and the election and other things to give me material to talk about. If they ask me how I'm I say fine. That is all. If they dig beyond that then I start telling them more. If not I move on.

 

 

[[Re...]]

Welcome to benzo buddies . Sorry to hear your struggling and your family has abandoned you. At least there is the benzo buddie family. We are fighting the same battle so we all help each other out. The first month is the hardest since you are in the acute phase. For me it was the second and third week I suffered the most then things lightened up a bit in the intensity .

 

It seems like you have your head on your shoulder fairly well all things considered . I feared or still fear there is something bigger going on with my health. Since withdrawel symptoms are identical to so many health problems. I have read about numerous people on here bieng diagnosed with fibromyalgia and other things as well. That's why I avoid the doctors. Well I also don't have health insurance .

 

I hope you feel better soon my friend, give withdrawel a couple of weeks to calm down. It's gonna be a bumpy ride. If you are worried about something going on with you. Post it on here and 9/10 times everyone has or is experiencing the same thing.

 

Thanks

Remy

[[ne...]]

Thanks for your support. It amazing how such a little bit of talk or text can help and goes a long way.

 

After this post, a new friend called and asked how I was doing. We spoke for a few minutes about my 'joyride' and the crazy stuff that is happening, then we spent the rest of the time talking about their life / jobstuff. Sometimes I think what I'm going through is easier than office politics. I know I should get better.

 

A few words or moments of validation of this crazy ride and a willingness to listen for a few moments goes a very long way. They were able to call on a ride home from work and made their commute go faster. One thing I have realized is how much more empathy I now have for others. I don't want anyone else to go through this alone. We treat animals in a shelter better at times it seems.

[[Re...]]

. We treat animals in a shelter better at times is seems.

 

So very true and insightful. I have a whole new degree of empathy within I never knew existed.

[[re...]]

 

 

Could there be someone on bb that may be near you just can help during this acute phase?

[[ne...]]

I don't know. We all have such a heavy load to carry already.

I did find someone to bring me groceries if I need it and they are only 9 miles away.

 

That was my biggest concern and I've recently solved this in the last few days. I'm hoping I won't need that lifeline ever. It's there if I do. They are also my emergency contact now. Just having this in place gives me some comfort.

 

Once I realized that those I counted on were not there, I needed to get at least one other option. The helper I now have is so busy with family and work that I will only request the help if absolutely necessary.

 

Having someone to come visit would be a nice to have...and in the shape I'm in I'm so embarrassed. I tend to tie myself up in knots like this. I hope it will get better as I come out of this fog and heal.

 

Thanks for all your loving responses....I've had no one to talk with about how this has all felt. People who really get what it's like to go though this.

[[Re...]]

I don't know. We all have such a heavy load to carry already.

I did find someone to bring me groceries if I need it and they are only 9 miles away.

 

That was my biggest concern and I've recently solved this in the last few days. I'm hoping I won't need that lifeline ever. It's there if I do. They are also my emergency contact now. Just having this in place gives me some comfort.

 

Once I realized that those I counted on were not there, I needed to get at least one other option. The helper I now have is so busy with family and work that I will only request the help if absolutely necessary.

 

Having someone to come visit would be a nice to have...and in the shape I'm in I'm so embarrassed. I tend to tie myself up in knots like this. I hope it will get better as I come out of this fog and heal.

 

Thanks for all your loving responses....I've had no one to talk with about how this has all felt. People who really get what it's like to go though this.

 

I would come visit you if I could. That would help us both .

[[ne...]]

 

 

I would come visit you if I could. That would help us both .

 

I don't know...we might have some fun...when I feel good, I like to run through the house with scissors!

[[Re...]]

I am all for running with scissors

[[ne...]]

Maybe a change of heart? 

 

After a doctors office visit yesterday, since I was out of the house I decided to make the most of a decent day. I went to home in local area. Some of my family that hasn't been of help just happened to drop by.

 

One family member said "I'm going to believe that you are just going to be all better very soon" or some BS like that. I heard it as "You are just fine so we don't have to do anything, just as we have been doing."

 

When someone later asked me what had been going on in front of them, when I started to answer, I had to compose myself so I wasn't flat out in tears. it was a 15 second pregnant pause, I shared that it has been so hard looking in the mirror and seeing a different person every time. That my body felt attached but it wasn't mine or it felt like it was changing all the time. That things just didn't seem real and it was very hard and frightening.

 

Later, they asked me what support would look like. I told them just call, ask me how I'm doing. Check on me, I should be monitored. Maybe, just maybe they are starting to see I'm not full of it. Maybe they will call. I can always hope. However, I'm not holding my breath until they do. Out of sight, out of mind.

 

Love this place! Thanks for listening.

[[Re...]]

Maybe a change of heart? 

 

After a doctors office visit yesterday, since I was out of the house I decided to make the most of a decent day. I went to home in local area. Some of my family that hasn't been of help just happened to drop by.

 

One family member said "I'm going to believe that you are just going to be all better very soon" or some BS like that. I heard it as "You are just fine so we don't have to do anything, just as we have been doing."

 

When someone later asked me what had been going on in front of them, when I started to answer, I had to compose myself so I wasn't flat out in tears. it was a 15 second pregnant pause, I shared that it has been so hard looking in the mirror and seeing a different person every time. That my body felt attached but it wasn't mine or it felt like it was changing all the time. That things just didn't seem real and it was very hard and frightening.

 

Later, they asked me what support would look like. I told them just call, ask me how I'm doing. Check on me, I should be monitored. Maybe, just maybe they are starting to see I'm not full of it. Maybe they will call. I can always hope. However, I'm not holding my breath until they do. Out of sight, out of mind.

 

Love this place! Thanks for listening.

 

I know how you feel friend. Dealing with family has been very difficult . Just know that they all mean well and do want you to get better. It's hard for people to understand what is going on with us. You can always try giving them material on the matter as well?

 

I gave this link to my aunt and wife.

 

http://benzowithdrawalhelp.com/2012/08/05/how-to-support-a-loved-with-benzo-withdrawal-syndrome/

[[ne...]]

I sent them the same link about 2 weeks ago. They never responded via email. We did talk about it and they said they understood how it resonated with me.

 

Still no change in behavior or attitude.

 

I've come to realize that I'm an inconvenience for them. I'm not on their agenda. I can't expect anything from them or I will be disappointed. 

[[Gr...]]

I just sent that link to our son and his wife is open to reading it. We shall see.

[[ne...]]

I've been looking for posts with no responses and trying to post something if I can say anything that will help.

 

I don't want people in here to be alone.

For some of us this is our last place of hope.

 

Hugs!!!

[[ne...]]

In the last 24 hours there has been a 180 degree change.

 

I'm staying with family in a clean bed and with a fresh shower.  I have support plans in place and after my primary care saw how bad I was, he freaked out 8-0 and got me into a hospital program to get me stable and with medical support. I had to agree to an AD med to start the program but it's one I've taken before and it's easy to ramp up on and I can stop cold turkey without issue as I have done more than once in the past several years.

 

I was able to drive twice yesterday and I've found that my home was a place of anxiety for me. We got a few things cleaned up yesterday and have plans in place to get more done so my home won't be so depressing anymore.

 

Things change. I wish simillar good things for all of you.

[[Vi...]]

Hi nexttime,

I'm so happy to see you doing better. Yes, I think talking to family is most of the time not a best thing. They don't really get it what's going on with us.

To getting out is a very good idea sometimes being at home is make us depressed even more.

God bless you and give you strength to fast recovery. 

[[Vi...]]

Hi nexttime, can I ask what med they recommend for you?

I'm on remeron only 4 mg. is help me to sleep and eat because I was not functioning for 2 months and loosing tomuch waight.

Hugs

[[Gr...]]

In the last 24 hours there has been a 180 degree change.

 

I'm staying with family in a clean bed and with a fresh shower.  I have support plans in place and after my primary care saw how bad I was, he freaked out 8-0 and got me into a hospital program to get me stable and with medical support. I had to agree to an AD med to start the program but it's one I've taken before and it's easy to ramp up on and I can stop cold turkey without issue as I have done more than once in the past several years.

 

I was able to drive twice yesterday and I've found that my home was a place of anxiety for me. We got a few things cleaned up yesterday and have plans in place to get more done so my home won't be so depressing anymore.

 

Things change. I wish simillar good things for all of you.

 

Praise the Lord!!! 

[[ne...]]

Hi nexttime, can I ask what med they recommend for you?

I'm on remeron only 4 mg. is help me to sleep and eat because I was not functioning for 2 months and loosing tomuch waight.

Hugs

 

Hi, they are saying prozac and I tolerate that well and can stop CT without issue.

 

I've totally stabilized and my doctor only wanted me to go for 3-4 days so I would stabilize. Goal HIT.

 

I just had a few hours of physical symptoms and managed them using natural stuff. Hot bath, drink water, stretching, pacing around the house to burn the adrenaline off, all with NO ANXIETY. NONE.

 

I'm safe, I have help when I can't, its distressing but not dangerous, I can get to ER if necessary. Family has doctors personal cell phone number. What more do I  need? I'm SAFE!!!

 

Even just now went to shave and got half my face done and razor ran out of battery and I didn't bring the cord. So, I'm half shaved and have to go help with something today. I DON'T care. LOL.  It's damn funny actually.

 

My net is in place...doing the highwire act with style!

[[In...]]

I could actually be your twin right now. Family and friends have all deserted me and none will read anything about what I am going though. I never thought I would be deserted like this as I have always been there to help them all when it was needed and never questioned them or called them liars. My heart is broken and I feel so alone and scared. I get the showering thing. Do t know why it is so hard to shower as I used to shower everyday without a thought. Now it just scares me.  I hope we heal very soon so we can smile again and have the luxury of showering everyday again. Little things we took for granted. Funny what are brains can do to us after these drugs. We will heal. Take care

[[Gr...]]

I could actually be your twin right now. Family and friends have all deserted me and none will read anything about what I am going though. I never thought I would be deserted like this as I have always been there to help them all when it was needed and never questioned them or called them liars. My heart is broken and I feel so alone and scared. I get the showering thing. Do t know why it is so hard to shower as I used to shower everyday without a thought. Now it just scares me.  I hope we heal very soon so we can smile again and have the luxury of showering everyday again. Little things we took for granted. Funny what are brains can do to us after these drugs. We will heal. Take care

 

Showering scares me too - as does closing myself into a room (all doors shut).  So many things we took for granted we won't anymore.  We shall enjoy life so much more too! 

 

Praying for you In.