Jump to content
neroli

neroli: Is this benzo withdrawal, or other drugs interacting

Recommended Posts

Carmie

Hi Neroli, 

 

Thanks for your lovely message. I’m glad you were able to get some encouragement from my thread. Wow! You certainly did a lot of reading.

 

I’ve been having trouble reading lately due to severe brain fog. Will drop in again soon, Im really struggling with waves at the moment. I’ve been awake since 2 a.m. due to a massive wave. 

 

Rabe n Bubble certainly had some lovely encouraging words. Here’s to winning this fight! 

 

Sending hugs🤗💚

Share this post


Link to post
neroli

Hi Bubble

 

Thank you for visiting, I know that you have been contending with more fatigue and heightened WD symptoms lately, so I am grateful that you took the time to send me some encouraging words.

 

I'm taking another day off today - I had got myself ready to go to work, then the trains had been cancelled, so I decided to stay at home.  I can work from home but again I have not got the energy to do it.  I will do my best to treat it as a time of recuperation and not a sign that my body is getting worse.  Actually, I wonder if I've driven myself a bit hard, I haven't taken leave time or sick time for a year nearly.  I am on reduced hours and can work from home or the office, so that is helpful, but I haven't really done down time  because I've been scared that if I do I will not be able to "climb back on the horse".  Also, I find it so dispiriting being at home with such reduced capacity to get out and about to see people, go to the gym or yoga, making social contact.  All of which you are probably familiar with.

 

I agree worrying will not help things - so I need to reframe my mind to see this time as recuperation and restoration.

 

Thank you so much for being supportive, I do hope you will emerge from your wave soon.

 

Warm wishes

 

Neroli 💜

Share this post


Link to post
Carmie

Hi again Neroli, 

 

How are you faring with another day off? I’m so sorry you’re feeling so bad, this is quite a struggle we are going through. It must be awful having that problem you have with your legs all the time. Yes, I’ve kind of learnt to live with the CFS, but withdrawals are another ball game altogether.

 

I’m sorry you can’t always go to all the events you want to go to either. I’ve actually got a concert this Saturday but if I’m not well enough I’ll have to give the ticket to a friend. It’s John Farnham, Darryl Braithwaite n a couple of others. It’s outdoors at Sirromet Wineries. I’ve never been there before. 

 

You are right, it is a comfort seeing that others are going through the same thing n we can all comfort one another, but at the same time we wouldn’t wish this on anyone. It’s hard to explain to people what withdrawals are like unless they’ve gone through them themselves.

 

I’m glad you’ve found a distraction with your knitting. I’ve had to stop crocheting for the time being as I’ve been doing it non-stop for all the years I’ve been tapering n I’ve been having problems with my wrist now. I’m hoping it will eventually settle if I don’t use it too much. 

 

This week I’ve been making bookmarks with those jumbo popsicle sticks. I drill a hole into them, paint them and then draw and write on them. I add the natural jute string. They turned out really well. It’s something that doesn’t take a lot of brain power. I’ve also finished a diamond painting n started a new one, it doesn’t take much brain power either. The waves have been so bad, I have to keep finding things to distract myself.

 

Are there any other things you would like make as well as knitting? Pinterest has a million craft ideas. 

 

You made me laugh when you wrote this about the support of your friends: “ the only way I can thank them is to buy them a house or something - they have given me so much help.”😁

 

You sound like you don’t really like staying at home. I love going out but I love being at home too. I’ve made my bedroom so cozy  now that it’s a pleasure to wake up there. I have my “happy wall” with artwork, balloons, fairy light etc etc. I got two colourful bookshelves this week, one in green n one in blue. I’m a big beach fan so I have a beach theme happening at home. I love white furniture n love to keep everything light n breezy. 

 

Being at home recuperating is definitely not doing nothing. It is actually extremely proactive. Our bodies need rest to heal. Going out n doing things all the time is not good for us. We need rest time.

 

I really hope that you are able to find being at home comforting at some stage. Maybe if you’re feeling overwhelmed ring a friend, you know, one of your friends you want to buy a house for🏡 😁

 

Yes, it definitely seems to be a minute at a time for the both of us at the moment but we will get there in the end, this crazy roller coaster ride will eventually come to a stop one of these days. 

 

Take care n I hope you manage to cope as best you can at home today💚

 

 

Share this post


Link to post
neroli

Hello Carmie

 

Wow, what a message - you really pushed past your brain fog!  Thank you so much.

 

So far, I've done a meditation - and dozed off again in it, which is actually quite good because I can't doze otherwise and when I do, I call it a Benzo-doze - come to feeling like I'v been hit by a bus and have to force myself to move about and shake it off.  Dropping off during meditation doesn't have the same consequence, which is lovely.  Plus it takes up time and makes me less agitated about being at home.  I used to to love time on my own at home being a bit of an introverted type - but since all this WD has happened it's felt like a bit of a prison.  I suppose the only prison, really, is my own mind, so I have to be really gentle with myself and not attend to the thoughts that tell me this is a life sentence.

 

Watching videos of buddhist talks gives me some comfort and distraction, as well as the knitting.  At the moment, knitting seems to be the go-to.  I can sometimes read but it's not so easy at home (find it easier to read on the train).

 

I am going to tackle a job today - I need to review my internet plan so I've got some researching to do to compare providers and then see if I've got to change to fibre or can stay on ASDL (ASDL isn't what the companies want you on, they want you to go to fibre but I'm a bit concerned that if I swap from the copper wire network to fibre and there's a power outage, the landline goes off and I don't have cell phone plan - just pay as you go, and what if the phone has run out of power?).  Anyway, that's enough to contend with today.

 

Hope your day goes ok - you do have yourself well set up to enjoy your surroundings,

 

Warm wishes to you

 

Neroli 💜

Share this post


Link to post
Carmie

Hi Neroli, 

 

I actually had some brain power again today. Amazing! I’m still in a wave though but at least I could think a little.

 

Hope all went well with figuring out your internet plan. I haven’t managed to escape my bed today, except to have a shower. It loves me so much😁🛏. At least my bedroom is cheery. 

 

Take care💚

 

 

Share this post


Link to post
neroli

Dear Carmie

 

I just don't know how you do it - keep up being so equanimous and up-beat-sounding with all the issues you face.  There are so many times when I feel so desperate about the situation I am in.  I don't know if it will get better at all, or at anytime in the near future, don't even know if the meds I'm on are making things worse and tapering off them is hell.

 

Last xmas a friend gave me a pad of up-beat thoughts for the day - today it said "Refuse To Sink" - and that's what it feels like, thrashing around to keep my emotional head above water.  Today has not been restful, it has been charged with the desperation.

 

I did sort out the internet thing, they have managed to get me onto fibre and charge me $10 a month more.  I could go back to another provider which would save me $20 a month but I don't know that I can be bothered, and even then they put up the charges once they have got you as a customer.  I think at this point, I just need to do things in the simplest way possible.

 

Sorry to moan to you.  I hope your bed has been good to you today and you have taken comfort from your cheery bedroom.  You are truly heroic.

 

Neroli 💜

Share this post


Link to post
Rosetta

Hugs, Neroli.  The fear of what might happen because we are sick is almost constant.  

 

Once in a while I'm able to see that there have been some good things that happened because I got sick.  It's never all bad.  I don't mean for this to be invalidating.  There are definitely reasons to feel stressed about Having to give up a job, but I'm trying to look at this illness as a fulcrum of sorts.  I'm trying hard to remember that the future will be different from what my sad mind envisions when I'm feeling low.  That's true for you, too.  You are going to be fine, either way.  Keep telling yourself that.

 

R

Share this post


Link to post
neroli

Thanks, Rosetta.

 

I do need to tell myself, often, that things will be ok even if I have to give up my job.  My mind does get distressed and I am trying to work with meditation and "thought diversion" to mitigate this.  It's hard.

 

I'm glad you have found some good things out of your experience - that is something to help when things seem really bad.

 

I appreciate you popping by to give me a gee up.

 

Hugs

 

Neroli 💜

Share this post


Link to post
Rabe

@bubble wanted to say thank you for your wisdom!!!

Share this post


Link to post
Rabe

Hi Neroli...Im hoping the time you have taken off will give you even a bit of energy and peace.  I find I feel bad and then rest and feel better and then go again...am trying to not do so much when feel good because it seems to throw me back again.  

You do drive yourself Neroli...you are so committed to what you do and devoted.  Those are such good things.  You are a lovely person who deserves some of the devotion just for yourself.  Thinking about you lots!!  💜

Share this post


Link to post
neroli

Thank you @Rabe

 

You're one heck of a person, too.  Watching you get your meds. sorted and feeling so ill - you're so strong.  (I know we don't feel that on the inside many times - it's tough so much of the time).

 

I got back to the office today.  Legs have got tighter and the muscles are twanging more nowadays, so walking is more of a challenge.  it was good to see people, though, and to delete all the superfluous emails! I actually did a bit of real work, too.

 

much love - hope you're doing relatively ok

 

Neroli 💜

Share this post


Link to post
Rabe

Oh Neroli!  SO happy to hear that today was a better day for you!!  Makes my heart happy!!!  Hope you get some sleep!! 💜and that your legs feel better!!

Share this post


Link to post
neroli

You're so lovely, Rabe.  I will be getting some sleep soonish.  I tried to work out what time zone you are in (assuming WI means Wisconsin) - but couldn't locate it.  Doesn't mater, I'm just fascinated what time zones people are in and how they differ from here.  It's just gone 8 in the evening here.  So, I hope you get some sleep, whenever that time comes around for you.

 

💜

Share this post


Link to post
Rabe

Hi Neroli....it is now 2am...am up late tonight...it is the only time I feel settled!!  Yes...Wisconsin.  Sleep for you too!💜

Share this post


Link to post
neroli

Goodness, Rabe, up that late and the only time you have when you feel settled.  I'm sending all the best wishes I can your way as you continue to cope with your so very difficult situation.  💪💜😍

Share this post


Link to post
Rabe

You too Neroli!!!  Take care!!💜

Share this post


Link to post
Carmie

Hi Neroli, 

 

Thank you very much for your kind words but I don’t always feel equanimous and up-beat. I have shed many tears n have many days where I’m just in survival mode n trying to get through the day as best I can. I just tend to keep finding distractions to get through yet another day. 

 

This is definitely the hardest struggle of our lives.

 

You are truly heroic too, we will win this fight one day💚

 

 

 

Share this post


Link to post
neroli

Hi @Carmie

 

Thank you for telling me of your struggles:

19 hours ago, Carmie said:

I have shed many tears n have many days where I’m just in survival mode n trying to get through the day as best I can. I just tend to keep finding distractions to get through yet another day.

You have helped me no end letting me know this.  I find myself in the same kind of situation, too, at times (quite a few times) and I get so distressed that anything that might distract me falls away (can't even knit) and I sit looking at the second hand on the clock tick by till I can eat and then go to bed.  If it gets really intense, I phone Lifeline just to talk to somebody about what is going on.

 

I am going to try to force myself to try meditating if/when another intense episode hits - I think it could be darned hard and maybe painful but I'll have a go.

 

It helps to know that I can hold you in my thoughts when it gets really tough, knowing that you are hanging in there through the struggle.

 

Love and best wishes

 

Neroli 💜

Share this post


Link to post
Rabe

Wanted you to know I am thinking about you Neroli....getting through these days minute by minute is so so hard!!!  Long days....take care of you!!💜

Share this post


Link to post
neroli

Thank you, Rabe.  You know exactly what it is like.  I see you are still trying to get your meds sorted - what a pain! (Well it's more than a pain,I know, it's yet another exhausting thing to go through).  And the symptoms you get sound so uncomfortable - I honestly don't know how we do it at times - each day another round of facing up to it.  Blessings to you for your fortitude.

 

Like you, I find I can do so little of what I used to do but the physiological remains optimistic for me and says I'm doing more now and she doesn't want me to add on anything extra physically.   Today I change my sheets and duvet (to a summer duvet), did a bit of trimming in the garden and my shopping - I think the physio would see that as quite a bit but it's one-eighth what I could do before.  Ok, so I'm grateful that I could change my sheets and do my shopping - must remember that, too.

 

Thinking of you too.  Take care, dear Rabe..

 

xx Neroli

Share this post


Link to post
Carmie

Hi Neroli, 

 

Thanks for your message. Just checking in to see how you’re doing. Hope you’ve managed to find some things to distract yourself with. 

 

Sending hugs🤗💚

Share this post


Link to post
Rabe

I know, Neroli....doing so little in comparison and having it drain me completely is something, with help here, I am finally seeing the connection to.  I just have to accept that...or do more and accept those consequences I guess.  Thing is it is so hard for others to accept and understand....that is really hard..to feel so much less than in the eyes of those you care about so much.  Hopefully they will grow along with me.  Take care Neroli!💜

Share this post


Link to post
neroli

@Carmie @Rabe

 

Thank you both for dropping in.  I wanted to cut and paste something that a friend sent to me on FB but couldn't get it to upload, so I'm typing it out as a kind of reminder that though we may feel we are less than we were, to others there are still qualities that they see shining through:

 

"Some of the kindest souls

I know have lived in 

a world that was not so

kind to them.  Some of the

best human beings I know

have been through so much

at the hands of others,

and they still love deeply, they still care.  If that isn't

something to be in awe of,

I don't know what is."

 

I think it's attributed to Bianca Sparacino, not sure because it also says Anne Grace Taylor on the bottom of it.  Ne'er mind, the sentiment is so welcome, when you feel like you've been changed from a friend into a disabled person needing more support.......

 

💜 💜

Share this post


Link to post
Carmie
1 minute ago, neroli said:

@Carmie @Rabe

 

Thank you both for dropping in.  I wanted to cut and paste something that a friend sent to me on FB but couldn't get it to upload, so I'm typing it out as a kind of reminder that though we may feel we are less than we were, to others there are still qualities that they see shining through:

 

"Some of the kindest souls

I know have lived in 

a world that was not so

kind to them.  Some of the

best human beings I know

have been through so much

at the hands of others,

and they still love deeply, they still care.  If that isn't

something to be in awe of,

I don't know what is."

 

I think it's attributed to Bianca Sparacino, not sure because it also says Anne Grace Taylor on the bottom of it.  Ne'er mind, the sentiment is so welcome, when you feel like you've been changed from a friend into a disabled person needing more support.......

 

💜 💜

 

Hi Neroli, 

 

Your thoughts from your friend made me cry. 

 

Sending much love your way 💚💚

 

 

Share this post


Link to post
neroli

Back at you, Carmie.  I know, it's a moving message.

 

I bet your friends can still see that shining out of you.  Obviously they do, they still come to you and care for you.

 

💜

 

 

Share this post


Link to post
Carmie
1 minute ago, neroli said:

Back at you, Carmie.  I know, it's a moving message.

 

I bet your friends can still see that shining out of you.  Obviously they do, they still come to you and care for you.

 

💜

 

 

 

Oh, aren’t you the sweetest thing ever Neroli, 

 

Yes, my friends never desert me. I’m sooooo glad you have amazing friends too. One of my friends said yesterday that I pretty much brightened her day. Who would have thought?? I’m going through absolute hell but can still brighten my friend’s days! Maybe, I’m good at putting on fronts???

 

Sending hugs🤗🤗🤗

Share this post


Link to post
neroli
1 minute ago, Carmie said:

Maybe, I’m good at putting on fronts???

I think it may go deeper than that in your case.  I tired putting on a "pleased for you front" with my friend-in-withdrawal at work when he said he'd had a good weekend and been out to some places (I'd had a distressed one and struggled to get out walking) and he saw straight through me, knew I was putting on the "jazz Hands" as we call them!  Jazz hands is when you wave your hands out at the sides, looking like a vaudeville act, when inside you feel S**t!

Share this post


Link to post
Carmie
3 minutes ago, neroli said:

I think it may go deeper than that in your case.  I tired putting on a "pleased for you front" with my friend-in-withdrawal at work when he said he'd had a good weekend and been out to some places (I'd had a distressed one and struggled to get out walking) and he saw straight through me, knew I was putting on the "jazz Hands" as we call them!  Jazz hands is when you wave your hands out at the sides, looking like a vaudeville act, when inside you feel S**t!

 

I think you’re right Neroli, 

 

I really do have a deep down feeling of happiness n I’m able to transfer that onto my friends. 

 

I’m not sure why I’m this way, but I’ve never had a problem keeping friends no matter what I’m going through. Even in the depths of despair my friends still found me encouraging. I’m not putting on false modesty, but I’m not sure why. It must be an intrinsic part of my personality??

 

Have you ever done the Myers Briggs personality test. I’m an enfp in that. I’m definitely an extrovert, but I’m the kind of extrovert that needs the most alone time. 

 

Take care💚💚

 

 

 

Share this post


Link to post
neroli
5 minutes ago, Carmie said:

I really do have a deep down feeling of happiness n I’m able to transfer that onto my friends.

That's great.  I do have those feelings but they get submerged a bit when I'm in a suffering space.  I'm an INFP.  Definitely prefer one-to-one, in-depth connection, rather than groups and smatterings of chit chat

 

You take care, too.  Time for me to Netflix for a while but look forward to catching up again later (I think we're three hours ahead of you)

 

💜

Share this post


Link to post
Carmie
Just now, neroli said:

That's great.  I do have those feelings but they get submerged a bit when I'm in a suffering space.  I'm an INFP.  Definitely prefer one-to-one, in-depth connection, rather than groups and smatterings of chit chat

 

You take care, too.  Time for me to Netflix for a while but look forward to catching up again later (I think we're three hours ahead of you)

 

💜

 

Hi again Neroli, 

 

We are so similar, except you’re an introvert and I’m an extrovert. My sister is an INFP as well and we get on like a house on fire. We pretty much have similar personalities but I struggle to get her to a concert.🤣🤣

 

Enjoy Netflix💚💚

 

 

Share this post


Link to post
Rabe
42 minutes ago, Carmie said:

Some of the kindest souls

I know have lived in                                                                     😢😢  This is so beautiful Neroli and so true, especially now.  Thank you for sharing!!  I am 

a world that was not so                                                                       in awe here you you my friend and all my friends here....bless you!!💜

kind to them.  Some of the

best human beings I know

have been through so much

at the hands of others,

and they still love deeply, they still care.  If that isn't

something to be in awe of,

I don't know what is."

 

 

Share this post


Link to post
neroli

Today's notes:

 

Legs seem to be getting tighter and wobblier (seem to be always saying this but maybe it's incremental), knee joint pain increased, back ache increased.

 

Super-Exhausted.  Shakes and anxiety occurring more.

 

Went to the office but left at 1.45pm because I didn't feel stable enough to stay til 4.15.

 

Nausea/hungry feeling eating at my guts.

 

Am holding on all doses (have been holding Diaz since June 4 and did a 5mg drop in Nortriptyline which I updosed by 2.5mg one week later on 4 November).  Don't feel any better, seem to be feeling worse.

Share this post


Link to post
Rabe

Oh Neroli...I am sorry you had such a difficult day...please know I am sending love and hugs to you across the water...hoping it will wash over you and bring some relief.   That you go to work is amazing to me Neroli...your strength, dedication and determination are beyond words.  Please take care my dear friend!💜

Share this post


Link to post
neroli

Thank you so much, Rabe. I do very much appreciate your love and hugs skimming their way across the Pacific.

 

We all do amazingly, really, considering the circumstances and devastating symptoms we have to deal with.

 

Love and hugs coming back on the return journey across the seas on the ship "Surviving This"

 

Neroli. 💜

Share this post


Link to post
wantrelief
13 hours ago, neroli said:

Today's notes:

 

Legs seem to be getting tighter and wobblier (seem to be always saying this but maybe it's incremental), knee joint pain increased, back ache increased.

 

Super-Exhausted.  Shakes and anxiety occurring more.

 

Went to the office but left at 1.45pm because I didn't feel stable enough to stay til 4.15.

 

Nausea/hungry feeling eating at my guts.

 

Am holding on all doses (have been holding Diaz since June 4 and did a 5mg drop in Nortriptyline which I updosed by 2.5mg one week later on 4 November).  Don't feel any better, seem to be feeling worse.

Thank you so much for stopping by my thread and posting such a lovely supportive message.  I thought I'd drop by to see how you are doing and am so sorry to read that you are going through a difficult time.  I am glad you left work early and took care of yourself.  Just as I said in my thread that I don't feel like I am coping all that well, I am going to bet you feel the same but when I read what you are contending with, I hope you recognize how well you are doing getting through all of this.  Pain in itself is really hard to cope with and then the other symptoms on top of that are really challenging.  Yet here you are getting through the days and supporting others too. Your strength is inspirational, Neroli. I am thinking about you - WR. 💗

Share this post


Link to post
Rabe

Love the name of the ship Neroli...you will...you are so strong!  All that you do with work and all....and reaching out here in spite of your difficult days!  You have such a special heart Neroli!  I feel blessed to have you on this journey my friend!💜

Share this post


Link to post

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×

Important Information

By using this site, you agree to our Terms of Use.