neroli: is this benzo withdrawal, or other drugs interacting

[Tom37]

Hi Neroli,

 

As a fellow kiwi have been following your posts a bit and just wanted to let you know I think your doing a great job considering everything you are going through.

 

I know it’s difficult to manage work and withdrawal as trying to do that myself and sometimes I wonder how we all do it but it’s amazing what we can do when we need to. 

 

I see your in Wellington and while you can’t beat Wellington on a good day your lucky you don’t get the hot summers we get up in the Hawke’s Bay. It’s been no fun dealing with wd and the heat that’s for sure.

 

Anyway take care and continue to put one foot in front of the other each day and all you can ever do is your best. 

 

Regards

[neroli]

Hello @Tom37

 

It's lovely to hear from you - another kiwi (have to admit I'm an assimilated expat Brit been here 30-odd years).  Good to have your company (though wish it was in different circumstances).

 

Thank you so much for your encouragement - it is quite a trial keeping up the work and dealing with these syndromes. Good on you for keeping going yourself.  I'm lucky that I have an accommodating employer and I can work at home if needs be (though I hate being at home and working).

 

I would be toast in Hawke's Bay temperatures!  I'm in Paraparaumu and it's bloomin' hot for me today, I'm sitting on top of the fan.  Glad that there's aircon on the bus and train for my commute.

 

I'll take a look at your thread in a while - hoping you are doing ok.  And yes it is one foot in front of the other, day after day.

 

All best wishes to you.

 

Neroli 💜

 

[Rosetta]

Hi Neroli, I hope you can get the vine/ patio issue sorted out.  It's quite difficult to keep up with maintenance when you are just surviving day to day.  Hang in there.  -R

[neroli]

7 minutes ago, Rosetta said:

I hope you can get the vine/ patio issue sorted out

Thanks, Rosetta.  A man came to size up the job today.  He will start on Thursday.  It is hard making these kinds of decisions in this diminished state - I have to take things, even decision-making, really slowly or I can get a ramp up of anxiety.  I thought how I would feel not having the vine there - it will leave a big hole between me and the next door neighbour, which means less privacy.  At the end of the day, though, the roots have to be killed as they are in danger of getting into the water pipes and that would be super-alarming.

 

I will leave the hole there for a good few months while I decide what to plant in its place - no good planting anything now, they just go crispy in the heat.

 

Neroli 💜

[Rabe]

What the heck Neroli?  I could swear I sent you a post...but I dont know where it went!!!  UGH!!!  My mind!!

How are you doing?  Hoping things have settled down for you.  Im loving the vision of you literally sitting on the fan!!!😳

Hope you are able to stay less than roasting so that your system is not so affected  Keep drinking those fluids!!

Also happy to hear you will be able to have someone out to help with the greenery issues...think its a good idea to wait on the planting.

It would be sad if it didnt do well with the heat and all.  I gave my daughter flowering bush to plant and she said she didnt have time to

water it with the baby (these kids!) so when I went over last summer it was all brown and not looking well at all.  I suggested just taking the hose and 

leaving it by the bush and then just having to turn it on for a bit and turn it off later.  That didnt seem to fly either.  In any case, I probably ought to have

waited until it was cooler to do that for her was my point.  

Thinking about you my friend!!!  Take care of you!!  Love and hugs!💜

[neroli]

Feels very relevant today:

 

For One Who Is Exhausted, a Blessing
John O’Donohue
Published
December 22, 2017

When the rhythm of the heart becomes hectic,
Time takes on the strain until it breaks;
Then all the unattended stress falls in
On the mind like an endless, increasing weight.

The light in the mind becomes dim.
Things you could take in your stride before
Now become laborsome events of will.

Weariness invades your spirit.
Gravity begins falling inside you,
Dragging down every bone.

The tide you never valued has gone out.
And you are marooned on unsure ground.
Something within you has closed down;
And you cannot push yourself back to life.

You have been forced to enter empty time.
The desire that drove you has relinquished.
There is nothing else to do now but rest
And patiently learn to receive the self
You have forsaken in the race of days.

At first your thinking will darken
And sadness take over like listless weather.
The flow of unwept tears will frighten you.

You have traveled too fast over false ground;
Now your soul has come to take you back.

Take refuge in your senses, open up
To all the small miracles you rushed through.

Become inclined to watch the way of rain
When it falls slow and free.

Imitate the habit of twilight,
Taking time to open the well of color
That fostered the brightness of day.

Draw alongside the silence of stone
Until its calmness can claim you.
Be excessively gentle with yourself.

Stay clear of those vexed in spirit.
Learn to linger around someone of ease
Who feels they have all the time in the world.

Gradually, you will return to yourself,
Having learned a new respect for your heart
And the joy that dwells far within slow time.

 

Reprinted with permission from To Bless the Space Between Us: A Book of Blessings by John O’Donohue, published in the U.K. as Benedictus. ( I didn't get the permission, there's a website Im just having a look at called On Being ((https://onbeing.org/blog/john-odonohue-for-one-who-is-exhausted-a-blessing/)) where it was posted, so I"m taking the liberty of posting it here instead of just linking because I think it speaks so much about how this drug damage/tapering business can exhaust one and of building a faith of a gradual return to oneself).

[Rosetta]

How apropos, Neroli.  Thanks for posting. -R

[neroli]

2 hours ago, Rosetta said:

Thanks for posting

It helped me, summed it all up so well. 💜

[Rabe]

Hi Neroli...wondering how the vines are/were?...and if you made it though the chain saw and all.  Also wondering how you are doing?  I read on another thread that you were having an up tick in your symptoms...hoping that has subsided. Thinking about you Neroli.  Also hope the heat is not too bad and that you have perhaps been able to be out a bit.  I was out today and took a fall on some ice that was covered with new falling snow.  Lesson learned on that...but that was enough to ramp me up even more.  Up and down and up and down huh?  Hope you are on the up part of the roller coaster today!!  Love and hugs to you my friend!!  Thank you again for the beautiful post...I cried...too true!💜

[neroli]

6 hours ago, Rabe said:

Also wondering how you are doing?

Hello Rabe, thank you for your message.  I'm sorry to hear you had a fall and I can just imagine it would ramp things up for you.  If I get even the tiniest mishap (maybe dropping vege peelings on the floor, or something as mundane) my symptoms can escalate unless I use quite focused control not to let my mind spin.

 

Some notes:

Today has been one of the worst in a while.  I didn't sleep so well last night, probably because of the heat and I didn't keep my fan on, so I was wobbly this morning.   Went into work and got more and more wobbly and fatigued, so had to abandon at 1.30 and come home.  Temperature up to 28C and I was wiped out.  Legs are up to magnitude 9, feel nauseous, irritated bladder and constant weeing.  Struggling hard to work and keep concentration.  Didn't do any work when I got home, just lay in front of fans on my couch and you tubed.

 

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.

 

Anyway, another night of being like a jelly blob on the bed, two fans trying to cool down.  Only hope there's a better sleep tonight and I can work tomorrow (from home) and feel more positive about potential improvement of my condition over time.  Very low on faith in that at the moment.  And maybe there won't be any improvement, so I have to practice more acceptance.  Fed up with it all, feeling ill, dragging legs around, bloody "acceptance", fearing further disablement ....etc.....no, not well today.

 

Wishing everyone the best 💜

[wantrelief]

11 hours ago, neroli said:

Today has been one of the worst in a while

I am so sorry you had such a rough day yesterday, my friend.  It takes so much to get through days like you had but you did.  I know what you mean about being low on faith.  Hold onto the days where you have felt better as they will be back, maybe even your day today will be better.....I sure hope so!

 

Thinking about you and sending lots of love and hugs, 

WR.

[neroli]

 

Hello @wantrelief

 

Thank you for your message - I really do appreciate your words of support.

 

I'm working at home today and feel very wobbly and anxious (anxiety higher than usual).  Trying to focus on work and not worry that this is a permanent downward slide.  

 

Oh, there are going to be some tears today, I think.  I'm going to see the psychologist - talking about my fear of losing my job.  I've managed to keep going for two years through all sorts of symptoms but am always sensitive to potential degradation in capability and I'd just find losing work so difficult to deal with.

 

much love to you, you keep going and give me inspiration to keep going.

 

Neroli 💜

[wantrelief]

Hello my friend,

 

2 hours ago, neroli said:

feel very wobbly and anxious (anxiety higher than usual)

I am really sorry you are having another rough day.  It is really hard when the anxiety goes higher than usual....I have a difficult time coping when that happens.  It sounds like good timing for you to have an appointment with your psychologist today.  Hopefully if there are tears it will feel like a relief and just getting out your fears with her will also hopefully be cathartic in itself.  

 

2 hours ago, neroli said:

you keep going and give me inspiration to keep going.

And you do the same for me, Neroli.  

 

I am thinking about you,

WR 💗

[neroli]

57 minutes ago, wantrelief said:

Hopefully if there are tears it will feel like a relief and just getting out your fears with her will also hopefully be cathartic in itself.  

Thank you for your thoughts friend-in-arms, mine are with you, too.

 

The session did bring tears and maybe some relief from the anxiety.  I'm doing Acceptance and Commitment therapy and I just don't know if I'm getting it "right".  So, the idea is that accepting the situation, really accepting it, means that one defuses fears, anger at the being damaged this way, grief etc. and accept what is without piling more suffering on top with those unruly thoughts.  That, yes, the situation may be difficult but the responsibility for how I think is now mine and I can choose to either accept or fight the situation by buying into the unhelpful fear thoughts or whatever.  I just don't know whether I'm supposed to have reached a place of acceptance by now; there are days when I can feel reasonably ok and even good, relative to having lost my previous mobility and now having to deal with WD symptoms.  But acceptance, acceptance which could bring peace?   I'm not there yet.  Every day is a day of checking in on how I feel symptom-wise and whether I can go to work/go for a walk/go to the shops etc....

 

I mostly feel defensive in the sessions as if I should be telling her how active I've been, joining this club and that club, she even mentioned was I accepting and committing enough to walk without my sticks?  Whereas I feel as though just going to work, or even keeping up with some work, even at home, and getting out for a walk/doing my shopping/going to the shops when I can is pretty challenging for me.  I don't think I'm a lazy old slob with an "I give up" attitude.  I just can't work out if I should be pushing myself more to be more social at the weekends. But by the afternoon I'm usually tuckered and I'm not into joining a group.

 

Oh, I don't know.  I don't know if it helps or upsets me more.

 

Hope you're doing ok today.

 

Another three hours of work and then I can have a cup of tea and my bread and butter.

 

love

 

xxxxx

 

Neroli 💜

[wantrelief]

Oh Neroli, I am glad you were able to cry at your session today and do hope it brought at least a little relief.

 

Whilst acceptance is something we all need to strive for with the circumstances we find ourselves, there has to be some flexibility and acknowledgment of all of the positive things you are already doing for yourself to get through this.  Acceptance is an ongoing fluid practice (not sure that is even the right word), not something that is going to happen immediately and there will be times when it is impossible to fully accept....we are only human.  I hope I am not speaking out of place, I am just feeling defensive on your behalf.  I think you are doing an amazing job of accepting as much as you can. You are doing your very best, Neroli, and this needs to be acknowledged.  

 

I hope your afternoon tea treat helped lift your spirits.  I am thinking about you. 💗

 

 

 

[neroli]

1 hour ago, wantrelief said:

You are doing your very best, Neroli, and this needs to be acknowledged.  

Thank you, dear WR

 

I did have a nice cup of tea and b & b.  And I did do some work which has been taxing me, so that feels good to have inched that forward a bit.

 

I think I've had an AHA.  One of the practices she (the psychologist) has been explaining to me is "defusing thoughts".  So, if I have the thought "What if I get worse" I will most probably make more anxiety on top of the symptoms which will make it worse.  So the idea is that when a thought like that comes, you employ any strategy you can to defuse it and not fuse with it.  In the session today, I tried a suggestion from her, which was to repeat the "What if I get worse" as fast as I could for as long as needed.  Well, it was supposed to defuse the thought, clear off any holding onto it.  It did the reverse, I found it very "triggering" at one point and felt hopeless and was in tears.  That's why I think I'm not doing it right (but this is an old monster for me).  

 

I realised this afternoon that, while that particular exercise didn't work, if I could imagine/work out a way to defuse the thought then it would unhook me from that worry.  I think that's the first time I've had an ounce of an inkling of trust in what she is trying to do with me, that she is doing what she can to help me, not be there as a strict teacher type who is telling me I'm not doing well enough.

 

Will see how it goes.

 

Thank you for supporting me through today.

 

I hope you're ok. 💜

[Carmie]

Hi Neroli, 

 

Thanks for popping over to my thread. I’m sorry you’ve been struggling so much. I’m glad your afternoon tea always brings you a bit of comfort for the day. I think we all need to do those small things in our day that bring us comfort. It’s especially important in withdrawals.

 

I have to have the aircon on here in Queensland. It’s so warm, I can’t sleep without it. Are you finding two fans are of much help?

 

So you’ve been watching YouTube. I watch quite a bit of it too. I watched something funny today that I’d never heard of before, but I heard it’s quite popular. It’s called the baby shark song. It’s for kids and Bounce Patrol Kids sing it. It was so entertaining and I couldn’t stop smiling. A friend of mine was telling me about it as her kids love it and now she can’t get the song out of her head. We were talking about songs we can’t get out of our heads as I have two Keith Urban songs that keep playing over n over again.

 

Baby shark, doo doo doo doo doo, Baby shark doo doo doo doo doo,🦈🦈🦈🤣🤣 It’s so catchy. I think I’m going to have it stuck in my brain now.🎤 The video has had over 574 million views. You have to smile watching it. Mummy shark doo doo doo doo doo🤣. It might actually replace the Keith Urban songs in my brain.😂

 

I hope you enjoy your afternoon tea tomorrow💚

[bubble]

I'm still so low on my energy so have difficulty replying on time... But I follow your journey closely and enjoy the way you describe your therapies. I'm not sure what your therapist is getting at...

 

I'm all for finding a balance. Rest and even isolation are key for us. But getting involved and pushing myself a bit to be active even when I don't feel like it is very important and helpful. Not so if it clearly makes you worse. I wouldn't do it then. You strike me as active as can be. Just going to work or working from home is more than enough in our condition. I would be really angry with a therapist who wouldn't understand that. I get on with my therapist because she allows me to take the view that WD (and a very real micro level injury in my brain) makes her strategies work differently (or not work at all) with me. 

 

I had yet another thought as I was reading about your fear of not being able to function at work any more: your condition and level of functionality could get worse, it could stay the same or it could even get better. Funny enough, we somehow don't consider that option. Even if we are wrong (which we are most definitely not), it wouldn't harm us. Especially to the extent thinking we'll get worse. But due to evolution our brain has become Velcro for bad and Teflon for good as my book explains. So we need to have patience with ourselves.

 

So happy I finally managed to visit you. Thank you so much for connecting and sharing xxxx

[neroli]

32 minutes ago, bubble said:

I'm still so low on my energy so have difficulty replying on time

Hi Bubble

 

How lovely of you to send a message, especially as you are so low on energy.  I'm just about wiped out again - another tough day like Monday.  I do think the heat has something to do with it and not sleeping too well.

34 minutes ago, bubble said:

I'm all for finding a balance. Rest and even isolation are key for us. But getting involved and pushing myself a bit to be active even when I don't feel like it is very important and helpful. Not so if it clearly makes you worse. I wouldn't do it then. You strike me as active as can be. Just going to work or working from home is more than enough in our condition.

Yes, thank you for this.  I do struggle with my own thoughts of "am I being lazy or in avoidance of doing more activity" but to be honest, I think you're right - keeping up with the level of work I am doing is quite something - especially when feeling so ill all the time.  

 

38 minutes ago, bubble said:

But due to evolution our brain has become Velcro for bad and Teflon for good as my book explains. So we need to have patience with ourselves.

On a good day, I get hopes that I am improving, on a bad day I lose hope, so your book has some truth, velcro for bad, teflon for good.  Patience!?  Oh my, that is what wears thin on the bad days.  Visions of having to deal with this for years creep in and I just get exhausted thinking about it.  I guess the therapist is trying to help me deal with that by using the "delusion" technique.  I tried singing "I don't have any hope any more" to a childish-like tune today. (it's one suggested technique), it didn't feel like it took the sting out of the thought.  Can only practice.

 

44 minutes ago, bubble said:

So happy I finally managed to visit you

It's lovely to have you visit,  Thank you Bubble, I appreciate it.  And I hope your future plans go well for you.

 

Wishing us both more energy

 

xx

 

Neroli 💜

[bubble]

2 hours ago, neroli said:

on a bad day I lose hope, 

You know this is yet another WD symptom!

 

Neuroemotions are such a useful concept... The book is Hardwiring happiness by Rick Hanson. Basically how taking in the good and meditating physically changes our brain along neurons that fire together wire together. Wasn't able to get past the first few chapters. Hi Nesbo was much easier read

 

I believe things will get easier for you ones the temperatures cool down (and warm up with more sun for me)..

 

That exercise on I don't have any hope any more sounds really strange. Like positive affirmations in reverse. I feel like I would really start believing it and it would get entrenched in my highly susceptible brain if I was to repeat it...

 

oh you are anything but lazy and avoidant! A bit more energy would be more than welcome

[DMV64]

Hi Neroli....

Sending you comfort and thinking of you. How are you today? xo

-D

[Rosetta]

(((Neroli))) Thinking of you.  There are gel packs that you can buy for your face.  They stay in the freezer.  If you put them on the back of your neck they cool the body.  That might help you get through the heat?

[Tom37]

Thanks for stopping by.....

 

Yeah once into march it should start cooling down at night so that should help everyone sleep better. At the moment it’s window open all night (upstairs bedroom), ear plugs (cicadas going all night and I hate noise) and an ice pack 😂. Find the ice pack very good but can’t have it too cold otherwise hard to sleep. Definitely bit of a comedy scene in bed at the moment!

 

Hope your week hasn’t been too bad and even if it has don’t be hard on yourself. That’s one thing I’m trying to work on as always expect a lot from myself and in this wd state that is not good.

 

Take care.

[neroli]

6 minutes ago, Tom37 said:

expect a lot from myself and in this wd state that is not good.

yup, same here

[neroli]

15 hours ago, Rosetta said:

(((Neroli))) Thinking of you.  There are gel packs that you can buy for your face.  They stay in the freezer.  If you put them on the back of your neck they cool the body.  That might help you get through the heat?

Thank you Rosetta.

 

That's an idea - if I can find one easily I'll give it a try.  Guess the chemist is the place to look.

 

Thank you for stopping by - lovely to hear from you.

 

Neroli 💜

[shawny]

@neroli : how is ur tinnitus doing its faded or still there 

[neroli]

@shawny

 

Hi, the tinnitus is still there.   It is like I am swimming under water, that kind of rushing sound that you get when you swim down under the water.

[Tom37]

Hope you enjoy the cooler weather today/tonight!.....southerly change coming up here so will be a nice break from the heat. Bring on autumn I say.

[neroli]

Hi Tom

 

47 minutes ago, Tom37 said:

Hope you enjoy the cooler weather today/tonight!.....southerly change coming up here so will be a nice break from the heat. Bring on autumn I say.

YES! I noted the southerly change and the temp. going down to 9C tonight, with great joy (well as much joy as one can muster in this messed up state).  I do hope the cooler weather will bring some relief in the symptoms, I've been finding it pretty tough over the past week.  Lots of fatigue, wobblier legs, tears, SI etc....

 

Wishing you better days, too.

 

Neroli 💜

[wantrelief]

Hello my friend,

 

I have been thinking about you and thought I'd pop by. I am glad to hear the weather is taking a turn for the cooler - I so hope it helps with your symptoms.  I am really sorry it has been a tough week for you, Neroli.  I will keep my fingers crossed the cooler weather gives you a much deserved break.  

 

Your f-i-a,

WR

[wantrelief]

Hi Neroli,

 

I thought I'd respond to your message on my thread here.  I am really sorry to hear about your back and how it contributed to your legs feeling worse.....how very frustrating!  I am glad to hear the back pain is now a little better....that is a good sign and hopefully it will go away for good very soon.  And despite it all, you got your shopping done which is great!  

 

You are definitely not alone in this venture, my friend.  Let's hang in there together. 💗 WR

 

 

 

 

 

[neroli]

Hello @wantrelief

 

Thank you so much for your message.  I am just about hanging in today.  Heightened nausea and anxiety, exhaustedness, legs wobbly and apathy.  I was going to have my hair cut but have cancelled.  I can hardly bear the thought of making my lunch.  It's the couch again today, a friend will visit this afternoon and I guess she'll get big tears as her treat for visiting.  So scared when things hit like this, so scared of more loss (of work) and interest in life, or faith that things will get better.

 

But I must remember that things do change and it could be a deep blip which will balance out.  You being here is helpful, I know you have a less-than-desirable baseline so you must have to just hang in some days.

 

Neroli 💜

[wantrelief]

28 minutes ago, neroli said:

I am just about hanging in today.  Heightened nausea and anxiety, exhaustedness, legs wobbly and apathy.  I was going to have my hair cut but have cancelled.  I can hardly bear the thought of making my lunch.  It's the couch again today, a friend will visit this afternoon and I guess she'll get big tears as her treat for visiting.  So scared when things hit like this, so scared of more loss (of work) and interest in life, or faith that things will get better.

Oh, Neroli....I am so sorry it is such a rough day for you.  I do so hope it helps to have a good cry with your friend.  I so understand the fears you expressed.  It is very difficult to have faith that things will get better, especially when you are feeling worse than usual.  

 

32 minutes ago, neroli said:

But I must remember that things do change and it could be a deep blip which will balance out.

Exactly....the only constant is change so this is indeed a blip that will balance out again.  If you can, hang on to the memories of the better days you have had....they will be back again.

 

35 minutes ago, neroli said:

You being here is helpful

Well, you being here is helpful to me so it is mutual!  Hang in there, Neroli....you will get through this blip.  Much love, WR. 💗

[neroli]

8 minutes ago, wantrelief said:

Well, you being here is helpful to me so it is mutual!  Hang in there, Neroli....you will get through this blip.  Much love, WR. 💗

Thanks WR, I do hope I am helpful at times.  I'd like to think I am making contributions as well as needing support.

 

love

 

Neroli 💜

[wantrelief]

1 hour ago, neroli said:

I do hope I am helpful at times.  I'd like to think I am making contributions as well as needing support

You are so helpful, Neroli. I feel like I can be open with you about how I am truly feeling and you get it, always there to support and encourage me as well as others in an authentic and genuine way.  You are very special, my friend. 

[neroli]

Thanks so much @wantrelief you brought tears to my eyes.  I very much appreciate your kindness and you dropping in.  It's been two weeks of quite a struggle now and I'm so fearful that it's not a wave, that the meds. are now actually acting against me. 

 

Hanging in.

 

Things could be different tomorrow.  

 

Love to you my friend

 

Neroli 💜