Arbor: dealing with PAWS

[arbor]

Dear @DataGuy--The hematologist thinks I'm ok for now.  (wheeoo).  When asked if he believed this was caused by the AD's, his answer was affirmative.

 

I'm left somewhat wondering if high levels of the immune system marker, IGM, relates w/d symptoms to those of COVID which I believe also causes high levels of IGM.  Inflammation anyway--

 

Hope you're feeling some relief and enjoying the spring!

Arbor

[Erell]

On 3/30/2021 at 7:13 PM, arbor said:

  Can you believe how enormously difficult our experiences of w/d are?! 

Honestly, I can't 😃 I avoid thinking too much about how crazy WD experience is, because it is that, crazy. And when I realise that or think about last 2 years, the thoughts get downhill pretty fast 😉

 

I try to apply the advices of those ahead us : take it day by day, remember that feelings are just feelings, fake it until I make it, ...

It is an everyday challenge, but I do know now that once we'll get better we will have the strongest coping skills for the rest of our lives.

 

And I try to make fun of it. Well, I'm not saying that I'm succeeding.

But I try to "play" with symptoms, I don't know how to explain in English.

For example, I have a lot of obsessive thoughts, I tend to obsess about everything. So instead of symptoms or fears, I distract a lot and find new hobbies to try to redirect my obsessions. 

And that's why I check my seedlings ten time a day 😅

Better to focus on broccoli right ?

 

To be honest arbor, I admire you a lot : being able to work during this challenge shows a lot of strenght.

I also know that a lot of people don't have the choice. I'm extremely lucky to have financial support for now.

I send you all my support 💪☀️

 

I do hope you'll feel some well deserved relief soon.

Take care.

 

[arbor]

Thank you, @Erellfor sharing your journey and also for your encouragement.  It helps to know you're there.  I hope this day is as stress-free as possible for you.  My joyous kitty has been such a steady companion through this ordeal.  She's like popcorn, jumping for her feather.

Thinking of you 💗💗💗

[DataGuy]

On 4/2/2021 at 2:12 PM, arbor said:

Dear @DataGuy--The hematologist thinks I'm ok for now.  (wheeoo).  When asked if he believed this was caused by the AD's, his answer was affirmative.

 

I'm left somewhat wondering if high levels of the immune system marker, IGM, relates w/d symptoms to those of COVID which I believe also causes high levels of IGM.  Inflammation anyway--

 

Hope you're feeling some relief and enjoying the spring!

Arbor

 

That is great to hear, @arbor! Seems you got lucky with your hematologist, most would probably not admit the harm from the meds even when pressed. 

 

Sleep has still been up and down, as per usual, but last night was a bit better. Glad because I was starting to get a bit frayed and fall behind. Just need to keep fighting and hope it continues to improve. 

 

Interesting thought about the IGM....always very hard to causally link bio-markers to much of anything, as psychiatry has found out (or not found out!). I think the true mechanics of biology will continue to elude us for quite awhile into the future. 

 

You're doing a great job as moderator, @arbor. Knew you would : )

 

I will try to check in a bit more often. 

[arbor]

An update

Recently, friends have been telling me they think I seem less depressed--read, irritable.  (Either I've accepted w/d, or become resigned, or am putting a politer face on it, or in fact I'm slowly, reliably improving, I don't know, but rather than having dramatic windows, I've just been kind of plugging along, and perhaps can admit to feeling today more optimistic-- 

 

After getting the second Pfizer vaccine, I did have a set back, developing the same psoriasis rash that I had in the first year of w/d.  It still hasn’t gone away again, so I’m waiting, and trying to think positively.  Also the nightmares came back, but are now better.  After the second vaccine I had a few nights of 2 hour sleep again, but now am back to around 6, cobbled together between waking usually 3-4 times in the night.  When people say they sleep 8 hours straight, I swoon a little bit with envy.  But anything’s better than 2 hours!!!!!!!! (of course, unless it’s one--)

Day by day, I believe the effects of the vaccine are receding.

 

May withdrawal itself recede soon for all of us. 🙏

This is so very hard--😞

Arbor 🌳

[HardTimes]

Still with you, Arbor! I think I know what you mean - If I look back to around Christmas, I suppose I have to admit I can see progress. But at the same time, the symptoms are still unpleasant, even if diminished. Getting five hours of sleep is certainly better than two, and we have to look on the brighter side as much as possible, but it still isn't as good as eight! Still, I'd like to see your lack of dramatic windows that others have described (and I've experienced) as possibly a positive thing... better slow gradual progress than bouncing around like a yo-yo? Every time I've had a dramatic window (in which I experience almost no symptoms for several days in a row) I think that the whole wretched ordeal is over, and so every time I find out it isn't I'm enormously frustrated and depressed by it all. Maybe baby steps are in fact a faster route... 

 

Plus it is excellent that you finished the vaccination process - catching Covid on top of all this would really not be pleasant, and now you can remove that from your list of things to worry about!

 

Ok, thanks for posting!

[arbor]

Sooo good to hear from you, @HardTimes, and to hear how you are.  Good news about the windows--which I'm sure are the direction you're headed.  But then the frustration and depression are so hard to deal with.  People who haven't gone through all this would have a hard time imagining what it often takes to endure.  Are you completely off now of meds?   

I sure hope you're enjoying spring in the Alps.  The clear warm evening here is pale green with new leaves.  I send you their shimmer.

Arbor

[Erell]

Hello Arbor

 

I'm glad to read the effect of the vaccine are fading and that you are already sleeping a bit better.

 

I'm not the "window-type" either, but from what I read we are not alone : a lot of people don't have "clear windows", but recovery still take place ☺

 

Sending hugs ☀️

[DataGuy]

Great to hear, @arbor. Hope you keep getting the same steady progress all the way back to full health : )

 

Glad you got the Pfizer and not the Moderna vaccine. Seems like Moderna is essentially the same as Pfizer but with double the adverse events. I am hoping to get the Pfizer vaccine whenever my turn is up.

 

One of the most severe cases of withdrawal I have heard of (CTing something like 8mg of Clonazepam) also reported no real windows, just slow steady progress and seems to have made a pretty amazing recovery. So it is possible!

 

Good to hear from both @Erell and @HardTimes too. I have had a bit better sleep lately, but still up and down. I also tend to have steady progress, although very slow and with the windows and waves pattern. I am looking forward to this pandemic being over so I don't have to hear doctors' opinions daily 🙄. And yes most of their pandemic claims are unevidenced opinions, which you find out if you listen to Vinay Prasad's podcast lol. 

[arbor]

Forgive me, @DataGuyand @Erellfor not responding sooner.  I ended up going down a bad tunnel because of the second vaccine.  It felt similar to the early days of w/d.  Insomnia returned and the rash spread all over my legs, worse than the original rash when I first stopped all AD's.  I had to postpone some of my work, so now I'm in catch-up mode.  The hardest part was how fully this backslide stalled me in my tracks.  Hard then not to berate myself for not functioning.  To distract the frantic malaise, I try to learn more about how AD's disturb our systems.  This time, because the rash (diagnosed psoriasis) kept spreading, I focused on AD's and the immune system.  According to some studies they change the intestinal immune system which eventually initiates a rebound problem, leading to, or in circulation with, so many of the other symptoms we deal with--aka, SI, nausea, psoriasis, insomnia, and way too many so forths.  So now I'm trying to see if getting my gut as healthy as possible helps.  And, also, Dataguy, with you as inspiration, I'm fasting longer.  

Who knows what has helped (perhaps it's just time as usual) but this morning I'm able to reach out again, and hopefully I'll figure out how to be a moderator.  You both amaze me!

I send you well wishes--May you be free of the heartaches and frustrations (in my case, terrors) of medication w/d!

Arbor🍀

[Kimboslice]

Hey. How you getting on? 

[Erell]

Oh dear Arbor,

No need to excuse : I think you're exactly in the right place when it comes to understand that we just do what we can when we can 😉

 

I'm really sorry to read you had such a strong reaction to the vaccine, but glad that you start to notice some improvements.

 

Yes, gut health, that's a big subject in mental health !

I have to admit that I find it really hard to know how to improve my guts during WD.

I don't manage to highlight triggers in my food, to understand what is easier for my guts.

And always wary to make new changes, like try probiotics for example.

Fasting sounds interesting : I used to do 16/8 fasting a couple of years ago and really liked going to bed with an empty belly, and I had much better energy during the day.

Haven't tried in WD, a bit worried it could stress too much my body for now.

How are you doing with fasting ?

 

And please don't be too harsh with yourself  : I think you are already doing amazing, and being able to maintain employment these last years is a huge thing !

You are already an inspiration, really.

 

Sending big healing vibes your way ☀️

[arbor]

Hi @Kimboslice--Thanks for your message.  It means a lot.  I'm better today.  Can bounce back from the daily ups and downs better.  For a while there I was just so weary of the healing process.  A friend commented that I don't seem to be getting anywhere, and I suppose I've been feeling that way.  That this is my life now.  So I'm taking things very much moment to moment.  Sometimes there are moments that feel not too bad.  And a few that are delightful.  I hope you are continuing to heal.  To regain your creativity is such a big deal.  In my life that state of mind has been something I equate with life.  So I'm happy thinking of yours right now!

Best wishes, Arbor

[Kimboslice]

I’m glad your better. That’s at least made me smile 😊. I think that’s just withdrawal.. It can seem as your paddling like a mofo without making any real headway. It’s windows and waves man. I’m very much in a slump rn aswell.. but progress has still been made. Creativity and writing skills are definitely better. When I first came to this site I was scared to post out of sounding thick.. so the fact that I participate without feeling self conscious indicates progress lol. Keep your chin up.. your doing great.. 👍🏻👍🏻

[arbor]

Wow, @Kimboslice you're right there!  So amazing--all that way across continents and oceans to Newcastle.  It's easy for me to feel a tug to England.  I first visited there when I was 5 to visit my aunts and great grandmother.  For my mother it was a return home.  I really appreciate hearing how you're doing.  It made me laugh because I've also hesitated to write here because my words feel all stiff and disorganized.  I hope your rough patch lifts soon.  I just feel in my bones that you will climb out of this.  Thanks for the chin up.  It helps--

Yours, Arbor

[arbor]

Thank you @Erell!  These words are so kind.  And I appreciate them so much.  I hope you are doing ok today.  Yes, I'm too have a difficult time knowing how to care for my gut.  I blunder along.  I agree about not disturbing your nervous system.  Fasting can be stressing.  It's also hard to fit it into a schedule.  Still, I do think I feel better when I do the 16/8 that you mention.  

I was very touched by your recent description of sitting by the creek.  It says so much about your beautiful nature.  It sounds like people around you don't perhaps understand what w/d is like for us.  I know that people around me don't really grasp the despair of it, and how up and down and illogical its progression is.  It's hard for them to understand why it's taken over my life.  In the morning (after usually a difficult night) I go to our messages on this site, and hearing our voices, I feel I can go on.

Thank you for all that you do, Erell--

Arbor

[DataGuy]

@arbor sorry you had such a tough time with the vaccine. You might be reassured to know that is actually pretty common, as the clinical trials indicated. I don't even want to think about going back to early wd 🥴. I am still very much up and down with the fasting. I do appear to be sensitive to certain food, and one thing my body tells me is that it doesn't like when I eat too frequently. I seem to do much better when I have a long fasting period (at least 14-16 hours) between my last meal of the day and first meal the next. It doesn't matter how many calories I eat, oddly enough. Not sure why, but would be interesting to know.

 

@Erell, since you mentioned probiotics, here is a paper I came across a couple years back in Cell:

Post-Antibiotic Gut Mucosal Microbiome Reconstitution Is Impaired by Probiotics and Improved by Autologous FMT

"In Brief Probiotics perturb rather than aid in microbiota recovery back to baseline after antibiotic treatment in humans." Seems some probiotics can actually slow the return of the microbiome to normal. This is why I tell people to avoid supplements that haven't been extensively tested : )  Very interesting about the gut and immune system, arbor.

 

@arbor please don't feel the need to reply with any sort of haste (or to even reply at all). I think we understand that it is difficult enough to get through life in wd without having to worry about answering every message in a timely fashion. Hope you are feeling better now : )

Edited April 28, 2021 by DataGuy

[SandCastle]

Hi @arbor just wondering if you are doing any better. I got my second vaccine about 5 days ago and am already having back pain, muscle cramps, nightmares and insomnia. This is all in the midst of a setback I was already having. I’m hoping it doesn’t last that long, so go ahead and give me the good news that you’re all better 😄

[arbor]

Yecchh, so sorry @SandCastle, to hear that you're having this experience.  I am finally able to write that I got some sleep last night, and feel in this moment some progress out of the vaccine setback....The rash is a tiny less red.  I'm sending you optimism.  You--will--get better.  And following that, more better.  Lots of better on top of better.  I'm picturing freedom.  

🌞Arbor

[DataGuy]

How are you doing @arbor? Still sleeping a bit better? How are the other withdrawal symptoms?

 

I have been having difficulty with sleep, I think primarily because of stress. A new neighbor had moved in and has been smoking pot on the balcony and I definitely do not want to breathe that with the sensitivity of my nervous system. I'm hoping I can get the to stop, but also can't even really prove that it's them. Very frustrating. My cat also seems to have developed some sort of hyperthyroidism....she is ok but needs to eat quite a bit more to maintain the same weight now. May have to get some sort of treatment. 

 

Anyway, looking forward to getting that treated and going back to normal! Hope you are better : )

[arbor]

I'm so happy to hear from you @DataGuy.  The stresses you describe are exactly the kind that bother my sleep.  Fears for my cat and social irritations.  You have my total sympathy....Very disturbing especially to hear about your kitty.  A friend's cat was just diagnosed with hyperthyroidism and so he's trying a different diet, but that can be hard to introduce.  My cat has been my main mainstay and heroine in helping me deal with PAWS.  Many a dark night, my thoughts plummet, but she keeps me here on the planet.

As far as sleep is concerned, since the vaccine I've clocked in 2 to 5 hours a night.  I feel I've lost ground with recovery.  My brain's been too foggy to be of much support on this site.  I don't like to report what might be discouraging for others.  We're all trying so hard to cope.  One thing I know however, is that kindness like yours and so many others', really, really helps.  I so appreciate that you're there, and how recovery is going in your life--😸

Arbor

(Today's been unexpectedly intense as a dear friend tried to commit suicide.  I've been at the hospital trying to help him with the doctors and their medications.  None of us saw this coming, so family and friends are really shaken up and conferring together about what we can do to help.  I'll return to that now, but it was nice to take a break and just catch up with you.  I send you the Sand Man with a dump-truck of sparkling slumber--May we all sleep)

 

 

 

 

[DataGuy]

Oh no @arbor, sorry to hear about your friend. Glad he has you there to help him. I think you have a special knowledge that not too many people have, including doctors.

 

That is good that we have the same set of problems. I actually had brought my cat over to a family member's place where I went to stay. They also have a cat and he is much younger and very playful. I then took her to the vet. Today she was passed out cold on her scratch pad for a good 12 hours straight lol. Definitely tuckered out. Hope we can get that same level of sleep one day : )

 

Feel better @arbor. Please remember to take some time to yourself when you need it. Don't want you working too hard. And please wish your friend well for me. Hope he finds what he needs ❤️

[arbor]

Thank you @DataGuyThese words mean a lot to me--Arbor 🙏

[HardTimes]

Hey Arbor.

SOO sorry to hear about your friend's brush with suicide. That really puts things in perspective and makes some of the more abstract suffering we often express on this site much more concrete. I'm glad he survived and now has a good group of people around to support him. I hope it isn't freaking you out too much - I know from first hand experience how upsetting that can be, particularly when it is so unexpected. What was going through his head? Why didn't we know? Why didn't I do more?? Very easy to put blame on oneself in the face of the incomprehensible. But don't do that! Being there now in whatever way you feel you can and doubling down on self care is the best thing to do. 

 

My thoughts are with you!

[Erell]

Dear Arbor, I send you all my hugs today ❤

I also know how especially hard these events can be while being in WD.

I can only agree with Hardtimes about not forgetting selfcare.

And also accept whatever emotions may come, and accept if they don't come too : various range of emotions are normal after living a shock, as well as perhaps not feeling them right now.

 

I somehow feel comforting the fact that your friend has someone like you by his side.

 

❤

 

[arbor]

Thank you more than I can say, @HardTimes.  I feel like such a sob-sister these days.  Your words are so very, very helpful.  Now I'm dealing with the shock (and of course lack of sleep) that comes with the next day.  Your words gave me the support to be clear with his family about what I can do and can't.  I know they don't comprehend AD w/d, or how difficult saying no to their expectations and pressures may be for me.  We think my friend may be developing an early inherited Alzheimer's.  It's a big family and they have the means to cope.  So thank you again for helping me to have some strength.  I just noticed that you're down to zero.  Golly!  Wow-- I hope recovery is setting a promising course for you, more windows than waves, steadily, steadily leaving w/d behind.

Much appreciation--Arbor

[arbor]

@Erell--I've been thinking of you during this time as i know you've had a difficult loss, and how hard these shocks are during PAWS.  It was very disconcerting to watch my nervous system unable to respond with the calm I had earlier in my life, and then so difficult in the night to calm my mind.  Your kind words remind me I'm not alone and that you know how challenging it is to cope under our conditions.  Your words strengthen me--

So much gratitude 💗

Arbor

[Dejavu]

@arbor, just popped over to your thread to catch up. Gosh, I'm so sorry for what you're going through right now. It seems that life deals us the hardest blows when we are already in such delicate shape, and it doesn't seem fair. I know there have been many times when I felt the fates were kicking me when I was already down, well, kinda like now...haha.

 

I hope with all my heart that your friend finds peace in this life, and that you do as well. As Erell stated above - self care is critical. You can't pour from an empty cup. Hugs!!

[arbor]

@Dejavu--You're so kind to leave this message.  It really makes a difference.  I'll be keeping you posted.💗Arbor

[DataGuy]

Hope you are feeling better @arbor. PAWS definitely makes it more difficult to deal with stressful situations (in fact I think greater reactivity to stress is a hallmark of the syndrome). 2-5 hours per night is difficult. That is roughly where I've been with this smoker situation. Very hard to operate on that schedule. I do ok if I can consistently get 4.5-5 hours, but anything less than that is not too workable. 

 

I hope your friend is stabilized. I think I had mentioned that my grandfather was diagnosed with dementia over the course of the pandemic. Luckily it is relatively mild still. I have had a number of phone conversations with him in which I would probably not be able to tell he had dementia if I didn't already know. Maybe just some age-related cognitive decline (he is 90). He was very sharp as a young man, so he maybe has some reserves that other people don't. But he is quite frail and I still hope to visit him soon. Glad to hear your friend's family is large and able to support him. I'm sure he still has plenty of good years left. 

[arbor]

9 hours ago, DataGuy said:

PAWS definitely makes it more difficult to deal with stressful situations (in fact I think greater reactivity to stress is a hallmark of the syndrome).

 

Thank you @DataGuy--This nails the syndrome for me.  And everything can be a stress....Then adding a big one makes sleep (already fragmented) impossible.  My friend is still in the hospital.  He tried to withstand the pressure, but the doctors finally got him to start Zoloft.   As of yesterday he's stopped talking to us, stopped eating or drinking water.

 

I'm just holding him in my heart.

 

 

(New study: antidepressants significantly raise the risk of suicide in the treatment of depression for adults

by Admin on 25/06/2019 in News, Psychiatric drugs)

 

 

Meanwhile with the sleeplessness, I cling to the success stories, and am utterly grateful to the support of everyone here.  I sure hope you begin to get 5 and more hours a night soon.  

 

I'm not surprised to learn that your grandfather was a sharp young man!  It would seem that a diagnosis at 90 may not be that unusual.  How wonderful that you'll be able to visit him.  That'll probably be the best medicine he could get!

Thank you for all you do, Dataguy.  When you can't sleep, keep in mind the kindnesses you bring to us here--🕊️

Arbor

 

[Erell]

❤

[DataGuy]

How are you doing @arbor? How is the sleep? I hope it is better. 

 

Mine has improved a little bit. I am still struggling to try and fast and get back on track. I managed to fast from noon until around 10pm yesterday, then had a few cherries before bed, then fasted for another 10 hours. I would definitely prefer to do it all in one block, but life and symptoms keep getting in the way. Oh well, I will keep at it. I actually have a friend who can fast for 40 hours no problem. I'm envious lol. 

 

Don't feel the need to reply right away. Please do it on your own time when you are not feeling harried. For now I will just wish peace and serenity upon you : )

[arbor]

Thank you so very much for this @DataGuyI do a walking meditation everyday which includes the words, May I (or another person, or all beings, etc.) have peace and serenity.  Then today: there were your words!  I felt a needed boost to "peaceful" immediately--

Good news that your sleep is improved.  Mine has no rhyme or reason.  Very, very challenging both in the wide-awake night and all the next day--as you know.  I might try this, try that, and sometimes something works--but for 3 days, then it's back to a testy, overheated, forlorn brain.

On the other hand, I'm pretty good with just intermittent fasting.  Still able to get in exercise everyday.  Partially I'm superstitious that if I don't, I won't sleep.

To give an update on my friend:  he started to fall on the Zoloft, refused food and water.  Stopped speaking.  They've hydrated him, taken him off the Zoloft and moved him to hospice.  At least now he's speaking and eating again some.  But I think the isolation of the pandemic quickened his dementia.  It just all came together faster than anyone was prepared for.

Probably the best thing going on for me these days is beautiful hiking .  On Sundays I usually can get out with friends.  The woods are still cool, but this week we have forecasts up to 43.9C, so everyone is bracing.

I hope the smoking issue has resolved for good in your apt building and that your kitty and you are well!

Many hugs to you,

Arbor

[DataGuy]

Thanks @arbor. It sounds like you've got a great routine going there, and even if symptoms do not always cooperate with treatment, I'm sure it's contributing to your stability. 

 

I forget if I shared this article with you, so please excuse my forgetfulness if you have seen it before: "Fasting as therapy for neurological disease". Seems like we are probably some of the only creatures in history where food is plentiful enough that we could easily go months or years without ever missing a meal. I guess it is logical to question whether that is beneficial for health, given our evolutionary history. This is a review of the evidence for fasting. The evidence is pretty weak (not many randomized controlled trials in humans), so as usual in that case, proceed with caution. I think the major possible harm to look out for is hypoglycemia, which can result in dangerous symptoms in some people. But seems you are already tolerating it quite well.

 

I'm sorry to hear about your friend. I hope he receives good care at the hospice.

 

Great to hear you are hiking on weekends. Some of my best memories are from 3+ hour long hikes through the woods. There is something very enjoyable about completely exhausting yourself in nature : )

 

I'm going to send you something to cheer you up. We have allies in high places, Arbor 😉

[arbor]

@DataGuy--This looks really interesting!  (No, you hadn't shared it--and I can relate to the memory thing...)  I'm going to dive right in--and make sure the intermittent fasting I do is adequate.  I stuff a lot of calories into the meal portion of the day, but my weight stays even keel.  At first I'd lost so much weight that I wasn't sure I'd get it back.  Now I'm finally at a good weight, but the muscle and fat portion of it haven't fully recovered, so I live with that...     I think if I were to increase the fasting time, I would have to do it very gradually as I do start to feel that my blood sugar is getting low at about 17-18 hours.

 

I'm wondering if you had a chance to see your grandfather (and that his doctors aren't trying to put him on Seroquel for the heck of it--as they are with my friend).  

Our temperature reached 114F (45.5c) yesterday.  To be honest, people are frightened.  I know this heat dome is also affecting BC.

These are not the easiest times.

Meanwhile, please know I'm sending you wishes for sleep, health, and recovery🪐💜🎈

Hugs from Arbor