neroli: is this benzo withdrawal, or other drugs interacting

[Tom37]

Sorry to hear you are struggling....hope you enjoyed the cooler night last night. Of course a wave had to hit for me so didn’t get to enjoy it but hopefully tonight will be better.

 

Take care.

[neroli]

Hi @Tom37

 

Thanks for dropping in.  I didn't get any better sleep last night so quite disappointed.  I'm sorry to hear yours wasn't confutable either and I hope for both of us tonight is better.

 

I'm just sooooooo exhausted and have been wondering all day why such a bad wave?  Yes, heat, yes, not sleeping so well, but this level of unwell-ness?  And then I remembered that on Friday I had been stressed up to the gunwales re-writing a tight-deadline memo - I wrote from 7.30am through to 1.00pm, eating as I worked and I was beside myself with back pain and stress at the end of it (despite taking a couple of meditation breaks).  I guess it's not so unlikely that I would be still feeling the effects of that two days later.

 

I've got my lunch and backpack ready to go to the office tomorrow, banking on a better night's sleep tonight and a whole brighter outlook tomorrow but I'm actually thinking that I need to stop pushing myself so hard to keep everything as "normal" as I can and will probably work from home.  Hopefully the memo only needs tweaking a bit after my manager's overview and the deadline can go hang for a day or so (I'm usually on time with every piece of work I do and the system actually causes delays in things getting done) then I can relax a bit doing some reviewing of texts.  It will help my back as well not to have to lug the laptop on my back into town and back.

 

So, fellow traveller and Aotearoan, here's to a window for you and a bit of time-buying for me (working at home) to get myself back on my feet.

 

Nga mihi (wish I could work out how to put the macron on the 'a')

 

Neroli  💜

[Tom37]

These waves are so frustrating and for me have no idea if anything specific has caused it as pretty much do the same thing most days since this all started.  I’m guessing it’s just the brain finding something else to sort out but as to why it’s more intense this time who knows. Hopefully means more healing is happening.

 

Im fortunate my boss is based in Auckland so pretty much work to my own schedule and if need to go home early then I do. While it’s a desk job i do get out of office  daily visiting suppliers so easy to get out for a break if I’m struggling. I’m fortunate that I have no commute although lived in London for years so did my time on the tube!

 

Try not to push yourself too hard as your health has to come first. Life is a marathon not a sprint so look after yourself.

[neroli]

13 minutes ago, Tom37 said:

Im fortunate my boss is based in Auckland so pretty much work to my own schedule and if need to go home early then I do. While it’s a desk job i do get out of office  daily visiting suppliers so easy to get out for a break if I’m struggling. I’m fortunate that I have no commute although lived in London for years so did my time on the tube!

That sounds good (autonomy), I wouldn't be able to handle the external visits though.  I did a few times in London, last time it was Tooting Broadway to Russell Square (Northern, change to Piccadilly if I remember) I'd be toast on the tube now! 

[Tom37]

Managed almost 6 hours uninterrupted sleep so that should help.

 

Still struggling with this wave but it has slightly changed since last night. Intensity still high. Another day to just get through.

[Tom37]

Sorry posted that on yours instead of my own🤦‍♂️.

[Rabe]

Hi Neroli...I wanted to tell you that I am so sorry you are having such a hard time.  I can say that I think the stress is a huge factor.  I know that but when I feel better I forget and do things that just set me back so...like the GI procedures.  I am such a mess its unbelievable...like after the rapid taper!  Have felt bad not being able to be on for a bit...wanted you to know I am thinking about you so!  SO hope things turn around for you Neroli!  

I did want to say that my ears are whooshing and ringing like that most of the time since the rapid taper...I do think it is the benzo...I think anyway.  It has never totally gone away.  So I just hope that can put your mind a bit at ease about that part of things anyway.  Take care my friend!  Love and hugs!! 💜

[Rabe]

On 2/11/2019 at 12:16 AM, neroli said:

I'm wondering if my air con affects me, it's a heat pump so doubles as a heater in the winter and I notice sometimes when I use it all day in winter that the next day I don't feel so well, I'm wondering if the same happens when I use it all day as an air con.  Just a speculation that maybe the air coming out of it increases dehydration or something.

Hi Neroli...does it have a filter?  I know that I am so sensitive to everything when 'normal' but when my system gets jarred then the whole world is an allergy practically.  So...number one I think listen to your body and believe it...if it makes you feel not well you are probably right.  And try to get to care...like I said perhaps the filer or it needs some maintenance.  I dont know what kind you have...but perhaps look it up on line and see what it says about what you are experiencing or what maintenance or cleaning it might need?  IDK...just thoughts.  

I also think that hydration is huge and is something that can fly under the radar and we dont know it is there.  Do you ever drink sports drinks or anything Neroli once on a while...especially when feeling so poorly?  I now really know how dehydrating these meds are, especially with the tapering.  

Just so wish I could make it all better for you Neroli!!!  Care so much!!💜

[neroli]

Notes for today:

 

Much better day than the past three, four or five.  Had a better sleep last night and wasn't so exhausted on waking.  

 

Did stay at home to work and re-drafted the memo - this time keeping my eye on allowing myself not to try to rush through it, giving time to let the process unfold.  Took some discipline to not let the anxiety run away with me and I took meditation and legs-up-the-wall breaks to help.  Working at home is so intense, it needs these built-in breaks.

 

My back is so much better - the pain of the cricked back has gone, just the 'usual' lower back ache from my spine being compressed due to limited leg strength and sitting for longer periods than I would normally and the lack of my usual (old days) exercise.

 

If I didn't have the wobbly legs and a hum of anxiety in the background, I'd be more like the person I was when none of this was happening.

 

 

[wantrelief]

Such great news to hear you are feeling better, Neroli!  

[Tom37]

Thanks for your post......I saw you have had a better day which is great! A better sleep always helps that’s for sure.

 

Bubble’s reply was great and good to hear from an experienced member who has probably seen it all. Just always tough in those waves when your living and breathing every second of it and can’t see the overall progress. 

 

I really hope you can have two good days back to back at least!

[Rabe]

Oh so grateful to read this Neroli...wanted you to know how happy I am for you that you have had a better day.  Hope it continues and sending that hope to you, along with love and hugs, on the waves in the pond. 💜

[Carmie]

Hi Neroli, 

 

I’m so happy to read that you had a good day. Those good days really help us to see that we can recover, sending hugs🤗

[neroli]

Hello @Tom37 @wantrelief @Rabe @Carmie

 

Thank you for your joyous messages.  It was a good day.

 

And today I am back in the soup again.  I went to the office - legs like concrete blocks (they seem to be getting more and more stiff and muscles pulling), wrist aches, lower back pain, anxiety, exhaustion, big tears all over the bloomin' place.  

 

Didn't sleep too well last night, so maybe that has something to do with it.

 

Today I am truly, well and truly, fed up with all this and don't know how I can face years of it.  Some of you will understand that.  And it's not all just feeling sorry for myself; I mean I do, of course, but it's a deeper sense of fear and hopelessness.

 

Sorry to be a downer today.

 

I talked to my friend-in-withdrawal at work and said I had been drawing back from him as I feel I have nothing left to offer him - he is getting his webinar ready, has been writing for it, is going away for the weekend with in-laws and looking forward to it - and I am just a bundle of symptoms just about getting by - I feel lucky if I manage to do my shopping and have a few calm afternoons, knitting or colouring. FFS.

 

When we were both on an equal-ish level of withdrawal syndrome I felt I could offer him support and we'd talk and laugh about life and discuss art and things (I've been into acting and stand-up, improv and storytelling in the past).  We used to go into town after work  on a Friday and window shop and have noodles, then go our own ways and have had a lovely time (he's half my age and gay, so there wasn't any romantic link).

 

That went out of the window two years ago when I had the breakdown and I feel like I've slowly become more symptom-ridden and unable to contribute to conversation - especially as I blub every time I see him.

 

Here's a poem I wrote about our noodle nights (oh and I can't eat noodles now, ramps me up):

Noodle Nights

 

Stir-fried noodles

On a bed of shredded cabbage

Drenched in sweet, sour, vinegar sauce

 

Laughing across the table

That we’d gone into shoe shops

Declaring audibly “ooo - aren’t they disgusting”

 

Feeling a bit guilty about the shop assistants

How they might have felt about it -

Two people being very camp and maybe rude

 

Noodle shop is the destination

The crowning glory of an evening walk through town

The place where we can savour our jokes as we bite into hot, crispy, juicy spring rolls

 

Noodles

Steamy, savoury and crunchy

 

And we move our talk on to life and art

[Tom37]

So sorry to hear you had a bad day especially after yesterday.

 

I know we have different circumstances in this journey but I too have days and definitely moments where I have no idea how I will cope if this is an ongoing situation. I think doubting ourselves is part of the whole wd process.

 

I wish I could offer some more comforting words about how you can get through this but the most important thing is to believe that you can.

 

One day at a time and sometimes one minute at a time if need be.

 

Take care of yourself.

[bubble]

21 minutes ago, neroli said:

don't know how I can face years of it.

 

Dear Neroli, I enjoyed the poem about noodles so much! That's what recording good moments is about: to warm us in days when things are cold and dark. (But instead we feel them as paradise lost... I try to view them more along the lines of I've had a good life. And I'm still here. And I will let go off all comparing with others and all expectations from myself and enjoy my little life as I can enjoy it with my cramped circumstances AT THE MOMENT.

That's key and why I quoted your years of it. Yes, I've been reducing for over 5 years now but it's not always bad! Far from it. In those 5 years I experienced some of my best feel good moments of my whole life. And good functioning also. Last year I was also able to write poems, I traveled a lot, worked...

 

You are still in early days of stabilizing. You are going through windows and waves. Wouldn't you say yesterday was nice? That is your reality. Not today. Today is just a blip. It's just something to pass moment by moment as Tom says. So many good days are ahead. I can hear birds of spring chirping outside my window...

 

Hope you feel better soon and longer. It's just a matter of time. I'm happy to know you

Xxx

[neroli]

Thank you @Tom37

13 minutes ago, Tom37 said:

I think doubting ourselves is part of the whole wd process.

 

I wish I could offer some more comforting words about how you can get through this but the most important thing is to believe that you can.

 

One day at a time and sometimes one minute at a time if need be.

I know.  And thanks for the reminder.

 

I do hope you are having better days.

 

N 💜

[neroli]

3 minutes ago, bubble said:

I'm happy to know you

That is so nice, Bubble, thank you.

 

4 minutes ago, bubble said:

You are still in early days of stabilizing. You are going through windows and waves

ok, I'll hang on to that.  And try to remember that when I had the breakdown I was in windows and waves and as Shep has mentioned I am probably still dealing with the previous WD up to the breakdown and now I've got more meds. on top and am trying to reduce.  I guess I may have to hold for a good while.  Just so worried that my body is seizing up.

 

8 minutes ago, bubble said:

But instead we feel them as paradise lost.

I'm afraid I do.

 

8 minutes ago, bubble said:

I try to view them more along the lines of I've had a good life. And I'm still here. And I will let go off all comparing with others and all expectations from myself and enjoy my little life as I can enjoy it with my cramped circumstances AT THE MOMENT

Ah, yes, I get that intellectually, the emotions and my spirit have a long way to catch up.

 

Thanks, Bubble.  I'll come back to this post when the low moments hit.

 

Enjoy those birds.

 

N 💜

[wantrelief]

Hello f-i-a,

 

I am so sorry you had a challenging day yesterday.  I so hope as I write this you are getting a better night's sleep and, as a result, will feel better today.  I very much empathize with how you are feeling and I struggle with the very same thoughts/feelings as you describe.  The good news is that you have had better days and will again.  I know even the better days are not optimal but you will get there.  We just have to keep plodding along as hard as it is.  I am right by your side.

 

I am thinking about you, Neroli, and hoping today is a better one for you.

[neroli]

Hello @wantrelief

 

Thank you so much for your message.  And for walking alongside with me, showing that I am not the only one and you too are coping with similar thoughts and feelings.

 

Well, I'm about to set off for the office, something I definitely didn't think I would be doing today after the experience of yesterday.  I did get a better sleep, so hopefully that will help.  I have an external meeting today and that gives me the heebie jeebies somewhat as it means using extra energy to go to their offices.  I will endeavour to remain calm.  And then, late yesterday afternoon another senior manager set up a meeting with me for 3.00-3.30, which is just about the time when I'm about to abandon ship.

 

So we'll see how it goes.  Minute by minute.

 

And I hope you have a good day.

 

much love to you f-i-a

 

Neroli 💜

[Rabe]

23 hours ago, neroli said:

it's a deeper sense of fear and hopelessness.

 

Sorry to be a downer today.

 

Hi Neroli..wanted to say you are NOT a downer...sharing is not being a downer.  Where you are is where you are...that's ok...though I wish you to be feeling better SOON!!  I can empathize with your fear and hopelessness...I suspect it creeps up on most of us on and off.  You are NEVer alone and you are ALways so special and so real in all that you share.  And such a gift you have with the poetry!!  Loved it!!  Do you have a special journal for your poetry/thougths?  Lovely!!

Hugs and love, Neroli! 💜

[Rabe]

@bubble I just wanted to say thank you for sharing such beautiful thoughts...I copy and paste them to go return to.  Than💜k you!!

[neroli]

Hello @Rabe

 

What a lovely message from you.  Thank you so much.  I reflected today that if I didn't have you and other SA contacts I would be I a much worse situation, so alone with the awful times.

 

I can report that today was a much better day.  I am amazed.  I didn't think there was any way in the world I would get into the office today after the way I was yesterday - but something made me prepare my lunch and work gear anyway and I did go to the office.  

 

Lady Luck shone a bit and gave me a hand with a better sleep last night, much lower WD symptoms, only one heat spike (brings on anxiety and dark thoughts) in a team mtg, cooler weather out there, cool office at an external meeting I went to,  a senior manager  moving a meeting half an hour forward, so it wasn't right on the time that I need to bale if I'm feeling gruesome.  No tears - flippin' heck!

 

Today makes it feel like there is hope.

 

Thank you to everyone on this site who has given encouragement and support,  You are all special people.

 

xxxxx

 

Neroli 💜

[Carmie]

Hi Neroli, 

 

Thanks for popping over to my thread. I’m sorry you’ve been feeling a bit sad. This journey is certainly not an easy journey, but it is one we will eventually win.

 

So you did acting? So cool! Have you done any Shakespeare? You know, the funniest play I’ve seen in my whole life was The Play That Goes Wrong. Have you seen it? I was in hysterics, I really couldn’t stop laughing. My jaw was sore at the end of the night from all the laughter. It was absolutely brilliant. A friend of mine went to see it twice, I didn’t have the money or I would have watched it again. It certainly was good for the soul.

 

Hope you cope okay with the rest of the week, sending you hugs🤗

[wantrelief]

11 hours ago, neroli said:

I can report that today was a much better day.

This is great news, Neroli!  💗

[Carmie]

Hi Neroli, 

 

Just popping by to see how you’re doing. 💚

[wantrelief]

Hello my friend,

 

I wanted to thank you for stopping by my thread earlier today.  I also wanted you to know that I have been thinking about you.  

 

I hope all is as well as can be, Neroli.  💗 WR.

 

[neroli]

Hello @Carmie

 

Thanks for popping in.  That's so generous of you considering you are having such a time with brain fog and your other emotional concerns.

 

Today, I seem to be somewhat better.  It has been a Wild West kind of week.  Many big tears, anxiety, fatigue, legs feeling heavier, wooziness, nausea, exhaustion and some SI.  Just the normal run-of-the-mill drug damage /withdrawal symptoms  

 

At the moment, I think I'm feeling calmer and less exhausted, which is good.  

 

We have had big rain this morning and it's gone cold (17C).  I now have two pairs of socks on as the drugs have altered my blood circulation and I get numb toes (in winter, these turn into chilblains).

 

Happy days all round!

 

Hope you are doing ok.  

 

xx

Neroli 💜

 

 

 

[neroli]

42 minutes ago, wantrelief said:

 I also wanted you to know that I have been thinking about you

Thank you WR, my friend.

 

I have been thinking about you, too, and hoping that your baseline has remained tolerable, if not even improved (!).

 

My reply to Carmie above tells you a bit about my week.  Am cautiously optimistic that this week I will settle from the last reduction (45 days ago) of the Diazepam and will be better able to get into work and have fewer (0 if possible) bouts of big sprouting tears and anxiety. 🙏.

 

I have been reading through Shep's thread and have to say I am almost ashamed to mention my symptoms when I see what she has gone through and endured with such seeming grace and positivity.

 

I am watching videos of Norman Doidge talking about brain plasticity - for a smidgen of hope, really, that our nervous systems can recover somewhat.  I think you have to adjust your thinking patterns to have a go at it working.  I haven't quite worked out what one does yet, so will stick with meditation, yoga and distraction for the time being.

 

Hope your day has gone well and you are feeling ok.

 

xx

 

Neroli 💜

[wantrelief]

It sounds like you've had quite a week.....I am really sorry you've had some rough sounding days.  It sounds like today was a better one which is hopeful. 

I do so hope your have a better week, Neroli, and that your system will have indeed settled more from the last decrease.  I will keep my fingers crossed all goes well. 

 

1 hour ago, neroli said:

I have been thinking about you, too, and hoping that your baseline has remained tolerable, if not even improved (!).

That is very sweet of you, Neroli.  Unfortunately my baseline remains the same.  But at least I wasn't in a wave within a wave so I know it could be worse.  

 

1 hour ago, neroli said:

will stick with meditation, yoga and distraction for the time being.

You are doing great, Neroli.  Keep hanging in there, my friend....better days are ahead. 💗WR

[JackieDecides]

3 hours ago, neroli said:

Many big tears, anxiety, fatigue, legs feeling heavier, wooziness, nausea, exhaustion and some SI.  Just the normal run-of-the-mill drug damage /withdrawal symptoms

 

I'm sorry things have been rough.  

 

🤗  < hugs from me

[neroli]

Hello @JackieDecides

 

Thank you for coming round to my thread!  So nice of you to send me hugs.

 

Today has been better, started off rather low but has improved through the day, which is good.  It's meant that I can have a relaxed afternoon watching you tube videos and knitting mostly and that I feel more motivated to get my dinner ready and eat it.  

 

I'm hoping it also means that my legs will be ok to go to the office tomorrow.

 

Hope you're doing ok.  Sending my best wishes to you as you navigate through withdrawals.

 

Neroli 💜

[neroli]

4 hours ago, wantrelief said:

You are doing great, Neroli.  Keep hanging in there, my friend....better days are ahead. 💗WR

Thank you so much, WR.  It's so lovely to get some encouraging words.

 

Glad you haven't had major flare-ups but wish you could get a better baseline.

 

So you, too, f-i-a, are doing great.

 

xxx

Neroli 💜

[DMV64]

Hi Neroli!

How are you doing. Was just thinking of you.

[Rosetta]

I'm so glad you are feeling better, Neroli!! -R

[neroli]

Notes for today:

 

I've been a bit lower on the anxiety today and am a little proud that I made it into work and had an external meeting later in the afternoon and handled it ok.  I could feel my anxiety rising in the meeting (the bloody sh*tness of this condition is that any raising of my emotions - like my interest and passion in  the meeting this afternoon causes my anxiety to ramp) so I was taking lots of deep breaths and pulling myself back down off the ceiling mentally to focus on what was being said, rather than panicking about the anxiety.  On Sunday, I was in a such a state in the morning I didn't think I'd get into work at all this week.

 

I've got one more day of going to the office, then Thursday I work from home, then back in the office on Friday.  If I manage it this week, it will be the first week since xmas that I've done the full 4 days commuting and appearing in the office