Arbor: dealing with PAWS

[HealthHopeHappiness]

On 4/15/2022 at 5:37 PM, arbor said:

Dear @almuPA💜

I read on your thread that there's a chance you will be returning to Spain.  I hope this works out for you and your healing.  Thank you for your message.  Sadly, I still struggle with any kind of stress.  So many things that weren't stresses before have become monumental now!  I read snippets of the Success Stories every day to help keep me going.  It warms my heart to read your posts and to know that you, too, are struggling and prevailing.  No one could really know how awful withdrawal is, without going through our experiences.  I'm not sure I understand who I have become, or certainly, what I will be capable of later.  Perhaps you can tell from my tone that today is not an easy one.  I don't like adding more depression for others.  At the same time, I appreciate the supportive listening we provide here.  Thank you, almuPA!  Sometimes healing is a joint effort--🙏        I associate the cruel corruption of the pharmaceutical corporations with other enormous injustices and devastation in the world, and wonder how we will come together and heal.  For me, at this point, it's one person at a time.  Please know that you are in my heart and well-wishes🕊️

Thank you for your hug and I send you a big one in return,

Arbor

 

 

Sending hope and strength in bucket loads to you @arbor. Sorry things are hard again right now. You shine a light on here, keep sharing how you are feeling so we can support you like you do for us. 💞

[almuPA]

Dear @arbor,

 

I am sorry to read that you are going through a rough time. After the big big help that you were and still are for me, I wish I could do something for you, to make you feel better.

 

On 4/15/2022 at 5:37 PM, arbor said:

I associate the cruel corruption of the pharmaceutical corporations with other enormous injustices and devastation in the world, and wonder how we will come together and heal.

 

That's a great thought and question. What can we really do against this big injustices and big companies? But here we are, reading and writing to try to help each other. Educating ourselves and those around us (I've realised that my family is now more open to the idea that WD does exists). So yes, after all the suffering and disappointment, we are still doing something. That shows that even in our WD state, we are strong and brave and willing to do whatever is in our hand to prevent this horror to continue to happen. Maybe I am talking nonsense, but I just wanted you to know that we are here to fight together, and one day we will go to other side. 

 

On 4/15/2022 at 5:37 PM, arbor said:

No one could really know how awful withdrawal is, without going through our experiences.  I'm not sure I understand who I have become, or certainly, what I will be capable of later.

Ay, you have this capacity to put into beautiful words what is happening to us. It is always soothing to read you.

 

I send you a hug.

[arbor]

Dear @HealthHopeHappiness

 

Thank you for your message.  I  believe I'm doing better today (less despair/ a little more able to cope) because of it💜

I hope you're doing ok.  I know you have a lot on your plate.

Whatever healing is going on in our bodies, it sure can feel slow-motion!

Warm hugs,

Arbor 

[arbor]

Dear @almuPA--

Your message means so much to me.  Thank you.  I hope you're having an ok day.  Some days I seem to live a month of windows and waves in just one day.  Who would have ever thought we would have to go through this?  

Sending you visions of healing--

Arbor💗🌻🙏🌞

[Erell]

Dear @arbor, 

Just wanting you to know I'm thinking of you and hoping you have moments of respite that allow you to rest ❤️ 

[arbor]

Hi wonderful @Erell,

Thank you for your message.  It's hard not to be impatient with how long my w/d is lasting.  It's also hard coming to terms with all the mental and physical losses it's caused.  So as not to discourage others, I'll mention that I was on the drugs a very long time, and having worse and worse issues throughout.  I'm not young, and so I might take longer than others to recover.  Recently I was able to buck my doctor phobia long enough to get some blood work.  Although I still have anemia, most tests showed improvement.  I've been able to cut the thyroid drug in half. The tests to do with poisoning of my bone marrow caused by the drugs, though still not out of the woods, show improvement.  I'm taking sustenance from these reports.  My sleep is still fractured, but last night I slept 6 hours straight--a tentative hurrah! but also remembering how up and down this journey is.  I wish my mind were strong enough to be a good moderator.  I don't trust it enough to offer wise support, especially around tapering.  The variety and quantity of drugs overwhelms me right now.  I would hate to be mistaken and cause someone extra suffering.  Following a better night's sleep, I notice the tinnitus is quieter, and the autoimmune symptoms lessen.  2 times in the last couple of months I've had a moment where I could believe I'll recover.  Otherwise, I plug along.  Each day I remind myself to be extra tactful--Both tact and patience have been wiped from my brain.

 

It always lifts my heart and spirits to think of you.

You will someday be free of the effects of these drugs 💜

Arbor

[wantrelief]

7 minutes ago, arbor said:

I wish my mind were strong enough to be a good moderator.  I don't trust it enough to offer wise support,

I have read many of your posts, arbor, and for what it is worth think you are an amazing moderator posting gentle supportive messages despite all you are enduring.  I am rooting for you and hoping you start to see more and more improvements.  That you have seen some improvements in your health is really uplifting news.  I think you are very brave. 💗

[Ninabird]

@wantrelief @arbor

 

Both of you are so up lifting. This process is far from easy. It’s people like you that brought me to this site. 
 

Praying for healing and peace. 
Ninabird

[BrokenWings]

@arborIt is encouraging news to hear that you are showing signs of improvement. Despite all the suffering, you are doing an amazing job as a moderator.

 

I appreciate all the help and kind words of encouragement you have provided me since I joined. We are both on similar timelines and I think it helps us both to see that we have been improving... albeit painfully slowly.

 

Keep on fighting, we will overcome this. 💙

[arbor]

Thank you @wantrelief, @Ninabird, and @BrokenWings  I feel fortified by your kind words, and hope that your own health is increasing.  It's so much easier to meet this challenge together.

I send you hugs,

Arbor

[HealthHopeHappiness]

Thinking of you @arbor. I second that you are an amazing moderator and presence on here. Keeping you in my thoughts. 💞

[arbor]

Dear @HealthHopeHappiness  Your words have lifted my spirits.  Thank you 💗 

I was happy to hear that you've been getting positive results with acupuncture.  During the first few sessions I had with it, my legs were jumping like a frog's in a high school experiment.  The acupuncturist jumped back in surprise.  I hope your day is going well today.  The extremes of  day to day variability seem also challenging.  I send you big hugs and healing energy 🌻!

Arbor

 

[Oaktree1]

On 5/20/2022 at 8:25 PM, arbor said:

Although I still have anemia, most tests showed improvement.  I've been able to cut the thyroid drug in half. The tests to do with poisoning of my bone marrow caused by the drugs, though still not out of the woods, show improvement.  I'm taking sustenance from these reports.  My sleep is still fractured, but last night I slept 6 hours straight--a tentative hurrah! 

Dear @arbor

 

I am encouraged by the improvements in the blood work and you having another night of relatively unbroken sleep. 

On 5/20/2022 at 8:25 PM, arbor said:

2 times in the last couple of months I've had a moment where I could believe I'll recover. 

Given the health difficulties you endured in the past few months with the undiagnosed anemia the fact that you could envisage a full recovery even if only twice is encouraging.

 

Wishing you more calm peaceful moments and a few more nights of unbroken sleep.  I am with you on the phobia of medics - on this occasion at least they brought you some good news.

 

Anyway onwards and hopefully upwards for you.

 

Oaktree🌸

[Onmyway]

On 5/20/2022 at 1:25 PM, arbor said:

Hi wonderful @Erell,

Thank you for your message.  It's hard not to be impatient with how long my w/d is lasting.  It's also hard coming to terms with all the mental and physical losses it's caused.  So as not to discourage others, I'll mention that I was on the drugs a very long time, and having worse and worse issues throughout.  I'm not young, and so I might take longer than others to recover.  Recently I was able to buck my doctor phobia long enough to get some blood work.  Although I still have anemia, most tests showed improvement.  I've been able to cut the thyroid drug in half. The tests to do with poisoning of my bone marrow caused by the drugs, though still not out of the woods, show improvement.  I'm taking sustenance from these reports.  My sleep is still fractured, but last night I slept 6 hours straight--a tentative hurrah! but also remembering how up and down this journey is.  I wish my mind were strong enough to be a good moderator.  I don't trust it enough to offer wise support, especially around tapering.  The variety and quantity of drugs overwhelms me right now.  I would hate to be mistaken and cause someone extra suffering.  Following a better night's sleep, I notice the tinnitus is quieter, and the autoimmune symptoms lessen.  2 times in the last couple of months I've had a moment where I could believe I'll recover.  Otherwise, I plug along.  Each day I remind myself to be extra tactful--Both tact and patience have been wiped from my brain.

 

It always lifts my heart and spirits to think of you.

You will someday be free of the effects of these drugs 💜

Arbor

Dear @arbor

it is great that you are seeing some improvement. 'Snail-pace' is the name of this journey unfortunately but improvements signify hope.  I hate that you are going through such a challenging time with withdrawal but I love having you here. You are one of the few people who has lifted me up in my darkest moments and your kindness and warmth have sustained me in my challenging times. Thank you. You are one of my favorite moderators! 

 

May you have big bright windows and many of them coming your way. 

I hold you in my heart, 

OMW

 

[Ninabird]

@arbor

 

My heart is w you. I’m so sorry you are still suffering. 

 

WD is absolutely the worst storm I’ve ever been in. The thing that’s hard to wrap your head around is this could last years. I still have to taper off of 10mg of Lexapro then .50mg of Klonopin. I wonder where will I get the strength to tackle those? By prayer and one day at a time… just like this WD I’ve been in. 
 

How has your day been?
 

 

[arbor]

Dear @Oaktree1, @Onmyway, @Ninabird

 

Your kindness and support mean so much to me.  No one can understand as much as a fellow survivor.  And to feel understood and even appreciated goes such a long way in helping to keep my mind focused away from the despair and toward the good things compelling this ongoing state that often feels like catastrophe.

As an update, my sleep has been in a temporary pattern of good (6hrs) every other day.  I'm directing my energy at staying out of the mental weeds of w/d, trying not to be depressed about being depressed when that's mostly what my brain can muster right now.  Those little spaces that you've pointed out where light is getting in, are there, and I appreciate your helping me to keep them bright.

I hold you in my heart and believe we will get through this--

Arbor

[Ninabird]

Hi Arbor!

 

Just popping my fuzzy & lethargic brain over to see how you are doing today? 

 

I just finished eating lunch ( a little late) and hoping for my weird head sensation to go away soon. Ahhhhh.....gotta love these ever changing WD symptoms.

 

I would send you some Ca sunshine but as of right now, there doesn't seem to be any. 🥰

 

[arbor]

Thank you @Ninabird--It's great to hear from you.  I certainly can relate to the fuzzy weird head.  Oddly enough, some of us Portlanders are nervously eyeing the coming summer because every year it's been getting hotter.  Too hot for this environment.  You all are better adapted--except for the fires.  Let's hope this year is better for everyone.  Meanwhile, it would be wonderful to skip town and visit beautiful CA.

I hope your day is going well--or well enough.

Hugs💜

Arbor

[Ninabird]

@arbor

can I ask you a question? 

[Onmyway]

On 5/24/2022 at 9:37 AM, arbor said:

Dear @Oaktree1, @Onmyway, @Ninabird

 

Your kindness and support mean so much to me.  No one can understand as much as a fellow survivor.  And to feel understood and even appreciated goes such a long way in helping to keep my mind focused away from the despair and toward the good things compelling this ongoing state that often feels like catastrophe.

As an update, my sleep has been in a temporary pattern of good (6hrs) every other day.  I'm directing my energy at staying out of the mental weeds of w/d, trying not to be depressed about being depressed when that's mostly what my brain can muster right now.  Those little spaces that you've pointed out where light is getting in, are there, and I appreciate your helping me to keep them bright.

I hold you in my heart and believe we will get through this--

Arbor

Every time I read your posts I am amazed by the beauty of your expression @arbor. What a gift to us. Thank you. 

 

I hope that the sleep is improving even more and that you are getting some outside time. I have never been to Portland and can only imagine how beautiful and green it is. 

 

Sending you hugs and light

OMW

[arbor]

Hi @Ninabird--Please feel free to send me a private message with your question.

💗 Arbor

[arbor]

@Onmyway!  What a beautiful message.  Thank you 🎈

 

I'm still cobbling together a little more sleep.  It's making a difference. 

Oh and yes, it's green here.  Moss grows in the trees and ferns grow from the moss.  The plushness soothes my fratchety nerves.  Many people find the rain depressing, but I find it right now--congruent.  As if it were sympathizing.  When squalls blast through, I imagine they're haranguing the medical world that helped get us into this situation.  I hope your day is going well🌈.  You do so much for all of us.🙏

Thinking of you 💗

Arbor

 

[Ariel]

@arbor

Epiphyte acolyte here, soaking up nutrients. Thank you for sharing. 

 

7 hours ago, arbor said:

fratchety

This word <3 

 

7 hours ago, arbor said:

Many people find the rain depressing, but I find it right now--congruent.

Yes! Exactly. 

 

Astral plane scrabble? (I'm no good at either but my material self is in the mood for company and constructive distraction.)

 

With love and gratitude,

A. 

[Oaktree1]

@arbor

 

I have to second Ariel on the expressions of this post.

 

'Fratchety', 'congruent', 'cobbling together some sleep' - the poetic visualisation of  using your mind squalls as a mouthpiece against the medical establishment.  It's reminds me of parts of an epic poem.  

 

You must be a very literary person.  I know admiring your syntax is probably of not much use to you when you're suffering but it's amazing for me to read such eloquence - it's almost archaic - particularly in the world we live now - of gaudy moving visuals and emoticons.  Probably went over the top there but anyway.

 

I am glad you are getting more sleep.

 

Oaktree

[arbor]

Dear @Ariel and @Oaktree1

Thank you for your appreciative comments.  It's so nice not to feel alone.  Best wishes to you❤

Arbor

 

[Erell]

On 5/20/2022 at 9:25 PM, arbor said:

Hi wonderful @Erell,

Thank you for your message.  It's hard not to be impatient with how long my w/d is lasting. 

 

You're right, it's hard not to be impatient and not to compare. If I am honest, I must admit that I sometimes feel jealous and envious of people who seem to be making faster progress. These are probably not very constructive feelings, but they are there, and I think we can allow ourselves to acknowledge their presence and feel them because what we are going through IS particularly long and exhausting and does tests our limits. It's ok. I think everyone who has walked this path has felt these things. ❤️ 

 

I don't know if this will help you, but what helps me the most is to imagine a bright future, and to live in those fantasies if necessary on the harder days. I mean, if we assume that these symptoms tend to diminish or even disappear, as all the people who have gone through this before us can attest, how easy the future will be!
I don't want to be toxicly positive, what we are going through is not fair, and we may have some scars and life will no doubt continue to challenge us. But every time I imagine a future without daily cortisol spikes, without constant chemical terror, without this internal turmoil screaming to stop right now... Wow, this is definitely a life I want to (re)discover, and that I relish the idea of savouring.

I don't know when, I don't know how, and sometimes I don't know how to get through another day, but I know that if there is even a 1% chance that I will rediscover this life that I once took for granted, there is no way I will give up.

So in the meantime, if I feel the need, I allow myself to live in this imaginary world for the time being, to picture it, to feel it, and to tell myself stories about all the great things I will experience.

 

I hold you in my heart, arbor, and if it suits you, I'll include you in my daydreams, who knows, maybe one day we'll share an ice cream in the sun while listening to the seagulls, laughing about this strange experience we went through years ago ?

 

"2 times in the last couple of months I've had a moment where I could believe I'll recover." : I am happy to read this. These little moments of trust are so precious. Whenever I feel them, I write them down, so that I can read my words when the feelings have gone.  ❤️

 

On 5/29/2022 at 11:13 AM, Oaktree1 said:

'Fratchety', 'congruent', 'cobbling together some sleep' - the poetic visualisation of  using your mind squalls as a mouthpiece against the medical establishment.  It's reminds me of parts of an epic poem.  

 

Yep, arbor definitely is my my most sensitive English teacher!

 

 

Love to all ❤️ 

[arbor]

Dear wonderful @Erell  How fortifying it is to read your words.  Your English is strong.  When I am healthier, my aim is to improve my limited French.  Ever since @souim wrote the word "bourgeons"  on your thread, I've been practicing how to say it, and to remember it--(my memory being a punctured can at the moment.)  I hope your studies are going well.  I picture tapering off Prozac slowly bringing you relief.  You so deserve it, as do we all.  And I very much look forward to that ice-cream near the sea🍦🕊️🎈!

Big hugs as we continue,

Arbor

 

[Onmyway]

Hi arbor,

Just saw that also has been yet again elusive. I'm so sorry. This can be so exhausting. 

 

I have found that over time the body will compensate for the lack of sleep. I averaged 3 hrs/night the last 5 days and today I fell asleep on the living room floor for 4 hrs with my face in the carpet. Body couldn't find strength left to go upstairs.

 

I am so hoping that your body finds its way to some sleep and rest.

 

At some point I found asleep hypnosis (sleep cove on Spotify) helpful.

 

Sending you hugs and wishes for big windows!

 

Omw

 

[arbor]

Hi @Onmyway Thank you for your words of encouragement.  They make such a difference.

7 hours ago, Onmyway said:

I have found that over time the body will compensate for the lack of sleep. I averaged 3 hrs/night the last 5 days and today I fell asleep on the living room floor for 4 hrs with my face in the carpet. Body couldn't find strength left to go upstairs.

 

I am so hoping that your body finds its way to some sleep and rest.

 

At some point I found asleep hypnosis (sleep cove on Spotify) helpful.

Again, thank you.  This is very helpful.  I'll try sleep cove tonight.  Meanwhile I can picture you sleeping into the carpet.  Oh my gosh, what we go through.  I hope your living situation straightens out soon.  That's my main problem as well.  The neighbor with her Grand Piano which she's back to pounding everyday and sometimes for 2, even 3 hours, disregarding the mediation, and including just as I'm going to bed, pictures rattling, my teeth grinding, as was the case last night.  Forget sleep--

 

I send you hugs and wishes for your freedom from w/d,

Arbor

 

[Onmyway]

1 hour ago, arbor said:

Hi @Onmyway Thank you for your words of encouragement.  They make such a difference.

Again, thank you.  This is very helpful.  I'll try sleep cove tonight.  Meanwhile I can picture you sleeping into the carpet.  Oh my gosh, what we go through.  I hope your living situation straightens out soon.  That's my main problem as well.  The neighbor with her Grand Piano which she's back to pounding everyday and sometimes for 2, even 3 hours, disregarding the mediation, and including just as I'm going to bed, pictures rattling, my teeth grinding, as was the case last night.  Forget sleep--

 

I send you hugs and wishes for your freedom from w/d,

Arbor

 

Oh I'm so sorry @arbor,

 

your neighbor situation sounds so much worse than mine. I can't imagine how you're living through that. And in WD when everything is so much more impactful - sounds feel stronger, more startling, sending us into waves.

 

my heart goes out to you! Hope you find some peace and quiet some time. In times of hyperacusis I use hard core earplugs. They block sounds that come through the ears but not the ones that are felt through the bones of the head (I didn't know that was a thing either!) so are not as helpful with pounding and building noise. But may help at least a bit. I love the foam ones. I can look up my brand for recommendation if you'd like. 

 

big hugs and wishes for respite

Omw

[Oaktree1]

@arbor

 

I am so sorry to hear about the dreadful neighbour - it sounds like this is a straight forward nuisance case in tort.  Mediation has clearly not worked.  You may not be feeling up to doing that though...the things is to record the noise and the dates, just in case you want to proceed further.  Sorry if I am already stating the obvious but if you have proof and did decide to go to law things would go easier.  I am not sure of the law in the states but you do have a common law system I think.  Nuisance is a common law offence which I think by virtue of the repetition or intensity causes distress or damage.   I wonder if there is a any meeting of everyone in your apartment block about this neighbour.  She cannot be allowed to carry on in this manner knowingly causing upset to people after hours.   

 

I have a mouth guard (against teeth grinding) - in the past few years if I don't wear it I get a migraine literally every time.  You may already have one  - I swear by it.

 

Is there any way that the other residents who are being discommoded by this neighbour could gather together to make things uncomfortable for her.   I was very upset to read this on your behalf - what a XXXXX ....

 

Oaktree 

[arbor]

Thank you so much for your sympathy and support @Onmywayand @Oaktree1.  Your kindness really touches me.  When I'm well enough, I plan to move out.  Thank you for your ideas about coping with the situation, Oaktree.  They are excellent and I will see how they might apply.  I appreciate the time you both have taken to help me cope with this--

I so look forward to us all being better as our health returns.

Many hugs to you (((💜💜💜)))

Arbor

[Onmyway]

Hi @arbori am wondering how you are managing. Have you gotten any sleep and rest? What's been bringing beauty into your life lately?

 

omw

[souim]

Hi @arbor,

 

I just wanted to send you some support and love.

I'm sorry about your neighbour. I had a similar problem last year. One of my neighbour kept doing parties until late at night, every week. After a few weeks knocking politely on his door to ask him to stop, I lost it and yelled at him like a crazy person. I was mourning the losse of my baby nephew and it was just too much. I wouldn't recommand this method, but it seemed to have worked, maybe he got scared of me.

 

Anyway, I've been there and I feel your pain. It's also infuriating to think that this person just does not care about what you might be going through. I cried of rage at the time.

 

If you ever want to practice french, learn words, or even just talk about french literature (you seem to be very literary), you can always message me. This might be a silly offer but I don't see anything else I could do, and it might make your life a little bit more poetic...

 

You have much strength, and I admire you. ☀️

[Ariel]

Hello @arbor

Thinking of you, friend in PAWS.

 

Isn't it funny, that acronym? Sounds deceptively benign, even cute.

My mind has such positive associations with both "paws" and "pause". Maybe this connection contributes to some subliminal extracurricular bonus healing effect, facilitating a beneficial learning environment for our regenerating brains. A classroom (or laboratory, or atelier) with furry companions and naps, wouldn't that be conducive to neurogenesis? 

 

I'm thinking of you and wish I could ease your burden somehow. Wishing you moments of peace and respite and rest. You are very brave to endure!

I was sorry to read of the difficulties with your neighbor and subsequent detrimental impact on sleep. We certainly don't need that sort of extraneous stress going through WD. 

How are you getting through the days, hours, minutes, moments? I am holding space for your experience. 

No pressure to reply, just wanted to stop by and say hi.

 

<3

[arbor]

Dear @Onmyway, @souim and @Ariel  It is so good of you to help me through this time in my recovery/journey/hard-row-to-hoe.  I'm having a difficult time verbalizing right now.  Part of it is the lack of sleep and perhaps part, that the distress of my anger towards my neighbor feels disabling.  I cope, but have developed what I've heard described as "learned helplessness"--a listless lack of focus, which may just in fact be ongoing w/d.  Recently I made a vow that I will stop using the word, "psychopath" when talking with my friends ("psychopath neighbor, psychopath pharmaceutical CEO's, psychopath politicians").  Now--as a seeming result--I am wordless!  The eye doctor during my exam a few days ago asked me how long w/d is going to keep going.  He doesn't really understand any better than I, what's causing the double-vision.  My good news is that otherwise my eyes, despite the floaters (black squiggles and a miniature, omnipresent amber martini glass), are "looking healthy."  I'm so focused on how much I've deteriorated that I forget to notice those parts still managing to keep cranking.  

 

Yes, I can really relate to "I lost it and yelled at him like a crazy person,"  souim!  Anger is cccrazy-making!  Wow, and it worked--

 

Ariel--"furry companions and naps, wouldn't that be conducive to neurogenesis?"  My stalwart kitty is exactly the age of my PAWS (almost 42 months).  When I watch her napping, it's true, I can feel my fuzzy neurons straggling back to life--if only to kiss the top of her head.  

 

To find beauty, it's really helpful--thank you, Onmyway.  So much of seeing is about heart.  You all, and other people here as well, tend to it--a communal heartfulness, a shared heart kind of thing--and the beauty of that keeps me going....

 

More than gratitude--

Arbor