Carmie: accidently doubling up on Seroquel one day while tapering

March 6, 2023

4 hours ago, Carmie said:

Feeling utterly miserable though, the struggling to breathe 24/7 thing is taking an extremely heavy toll on me. I’m heading towards a year and a half without any reprieve.

I am so sorry you have continued to struggle with breathing and how you feel from that as a result. I can't imagine having something like this on top of withdrawal. You are very brave and I really really hope you get a reprieve soon.

March 9, 2023

On 3/6/2023 at 12:06 PM, wantrelief said:

I am so sorry you have continued to struggle with breathing and how you feel from that as a result. I can't imagine having something like this on top of withdrawal. You are very brave and I really really hope you get a reprieve soon.

Thanks wantrelief,

I appreciate your kind message. I’m not coping too well, my struggling to breathe is so intense. I’ve been crying today and yesterday. The waterworks have been coming hard n fast. So claustrophobic.

A couple of dear young ones came around today to measure my new air conditioner and to see how to take the old one out of the window and put the new one in. One of them will come back with his dad to do the fitting. My friends are so kind. Another friend came around with a couple of things she had for me. Again, very kind.

I can’t find my happy though😔. I’m good at pretending, which I did around these teenagers today, but I’m so very sad and distraught.

I’m scared that the immune flare the vax triggered won’t end. It doesn’t want to end. Will it just keep getting worse? I’m losing all hope, no one has answers. Doctors don’t know, naturopaths don’t know. Before the vax I had reprieve, since the vax I’m not getting any reprieve at all. What’s it done to me???

I’m taking a million supplements and I’m hoping to updose the LDN over a number of months, don’t know if any of these things will help. I have to keep trying things. I hope updosing the LDN won’t put me in a wave n then I won’t be able to do it.

Very scared. One day at a time.

Sending hugs to you🤗💛🤗

March 9, 2023

So sorry to hear you've having having a hard time @Carmie!

Sending you big hugs.

March 9, 2023

I am so sorry, @Carmie. You said you weren't coping well but that isn't how I see it. You are doing so many things to help yourself and are getting through this as best you can. You are in my thoughts and I continue to hope you feel better very soon. 💖

March 9, 2023

@Carmie

Im so sorry for your pain.
I also see a bravery in you! You making your way through this , you are courageous, you got this 💪

sending prayers and good vibes to you !

March 10, 2023

Dear @Onmyway @wantrelief @Heath

That’s so kind of you to send such beautiful messages. I’m not going to go on about my health problems in this message, but I’ll just say life is hard.

I’ve been trying to distract myself by writing letters and watching different things on YouTube today.

My husband’s carer rang me while they were out and about and asked if I wanted anything seeing they weren’t too far from the fish market. I ended up getting heaps of squid and snapper. I cut one of the large squid tubes up into thin rings and just fried it. I had some of it for dinner. It was so tender. There’s still some of the cooked squid in the fridge and every time I walk into the kitchen I open the fridge and keep snacking on it. It will probably be gone by the time I go to bed😁

A friend rang this morning and I had a long heart to heart with her, which helped get me through the day. Just what I needed.

Okay, tonight I’m going to updose the LDN to 0.75. Hopefully I won’t end up in a wave. I’m a bit concerned. I need to keep trying to up it though. I don’t know if it will eventually help my health issues, but I have to keep trying things. Here’s hoping I don’t end up in a wave with this updose.

…….. As I was writing this my alarm went off n I just got up as soon as it did and took my meds. 5,4,3,2,1🚀🚀🚀med time!⏰ I’ve been doing that all week, I’m definitely making that a habit. The other week I couldn’t remember if I took them and I don’t want that to happen again. No more dilly-dallying. If I do it straight away I don’t have to think about did I or didn’t I take them, as my brain is always in outer space.

Anyway, I hope you’re all coping as best you can with your sufferings too, much love, Carmie💛

March 10, 2023

21 minutes ago, Carmie said:

As I was writing this my alarm went off n I just got up as soon as it did and took my meds. 5,4,3,2,1🚀🚀🚀med time!⏰ I’ve been doing that all week, I’m definitely making that a habit. The other week I couldn’t remember if I took them and I don’t want that to happen again. No more dilly-dallying. If I do it straight away I don’t have to think about did I or didn’t I take them, as my brain is always in outer space.

I've been doing this too! Alarm, med, go. When I was snoozing it and thinking, "I'll get to that, let me finish this one thing," I was distracting myself into forgetting things. Gotta be on top of it!

Enjoy the squid, and I hope your breathing gets better and your windows get bigger.

March 11, 2023

Hi Carmie!

I am so sorry that you are struggling with so much right now. My heart is with you!

I was dealing with the autoimmune things for quite sometime after I tapered on my own at home and then worse

after the rapid hospital taper. My gut was so torn up I could feel the burning. I got down to eating 4 foods...rice,

chicken, sweet potatoes and zucchini. Since getting some help and supplements to support my cooky genetics too, my diet has increased quite a bit. Like you I eat only organic whole foods, and there are still categories that don't go well, but it has been so exciting to have progress. I never thought it would happen but it has and I believe it will for you as well. I had t heal my gut first and the ghee helped a lot with that. I also had my genetics done and found some 'interesting' things. like not absorbing vitamin D, and the MTHFR which I knew I had but thought was benign since it wasn't the double like my son...but not so. I found the more I knew the more I could give my system the support it couldn't get on its own...and most doctors have little knowledge on all this. My thoughts and prayers are with you. I would be happy to share with you anything that might support your journey. Blessings dear Carmie!

Becky💜

March 12, 2023

On 3/10/2023 at 7:31 PM, littlebird said:

I've been doing this too! Alarm, med, go. When I was snoozing it and thinking, "I'll get to that, let me finish this one thing," I was distracting myself into forgetting things. Gotta be on top of it!

Enjoy the squid, and I hope your breathing gets better and your windows get bigger.

On 3/11/2023 at 6:03 PM, Rabe said:

Hi Carmie!

I am so sorry that you are struggling with so much right now. My heart is with you!

I was dealing with the autoimmune things for quite sometime after I tapered on my own at home and then worse

after the rapid hospital taper. My gut was so torn up I could feel the burning. I got down to eating 4 foods...rice,

chicken, sweet potatoes and zucchini. Since getting some help and supplements to support my cooky genetics too, my diet has increased quite a bit. Like you I eat only organic whole foods, and there are still categories that don't go well, but it has been so exciting to have progress. I never thought it would happen but it has and I believe it will for you as well. I had t heal my gut first and the ghee helped a lot with that. I also had my genetics done and found some 'interesting' things. like not absorbing vitamin D, and the MTHFR which I knew I had but thought was benign since it wasn't the double like my son...but not so. I found the more I knew the more I could give my system the support it couldn't get on its own...and most doctors have little knowledge on all this. My thoughts and prayers are with you. I would be happy to share with you anything that might support your journey. Blessings dear Carmie!

Becky💜

Hi littlebird and Becky, thanks for dropping over to my neck of the woods.

Good on you for doing the alarm, meds, go thing too littlebird. It’s so much better just to do it as soon as the alarm goes off. No forgetting whether we took our meds or not.

Becky, you’re back. Welcome back. I’ve often wondered how you’ve been. I’m glad you’re getting on top of your health. I was in remission before the vaccine, but the vaccine has done something and my immune system has gone totally haywire. Whatever is happening in my body won’t switch off now. I take millions of supplements and I’m on AIP.

I just started on low dose naltrexone, but I’m only on 0.75mg so far. I have to get up to 4.50mg, but it will take me many months to get there. Then after that it could still take up to a year to work, if it does work. I don’t know if it will, but I’m trying everything I can. I’ve been struggling to breathe 24/7 for nearly a year and a half now since the vaccine. Before, when I was in flares, I’d get reprieve during them, but since the vaccine it doesn’t want to settle whatsoever. Feeling miserable and sad.

I don’t feel happy, but I’ll write a gratitude list anyway. Here goes:

1. I updosed the low dose naltrexone from 0.50mg to 0.75mg two days ago and it hasn’t caused any problems with withdrawals as yet. I think I definitely double dosed the other week and that’s why I ended up in a wave. It wasn’t from updosing the LDN, but just to be safe though I went back down to 0.50mg the following day. Anyway, onwards and upwards with the LDN dosing. Let’s hope the next updose goes well too.

2. The wave the other week from the accidental double dosing only lasted about a week or so, and wasn’t too bad towards the end of that week. I just rode the wave. Grateful it didn’t last longer as I wanted to start my LDN updosing again.

3. I had some flavoursome snapper for lunch, made enough for dinner too.

4. Going to have some okra for dinner also, I only started eating okra recently. Have never had it before. It’s scrumptious roasted. I’m a big fan! Now I have an okra radar whenever I’m in a fruit and veggie shop.

5. Had a tasty ginger and lemon tea just now. Love the spice.

6. Been prettying up writing paper and been writing letters for distraction.

7. Just watched the 1968 Planet of the apes movie with Charlton Heston. I remember watching it as a kid, I also used to watch the TV series, though the TV series isn’t on Disney Plus. Movies and shows are a good distraction. I love a lot of the old tv series like Murder She Wrote, Columbo and Starsky and Hutch etc. I must get some more Murder She Wrote DVDs, I’ve only got about three seasons I think. I’ve got the whole Starsky and Hutch series on DVD.

8. Watched heaps of YouTube videos, another good distraction. I just seem to be existing, so I’m grateful for distractions.

9. We had a little thunderstorm today and a friend just checked if I was okay. So kind. I loved the thunder and rain. I opened a window, lay on the couch and watched and listened to the rain.

10. I’m still going really well with my no noise before 9am or after 5pm challenge. It will be five weeks tomorrow. I think I’ll keep the habit for now. I really like it. I only allow white noise or nature sounds during that time if I decide to have any sound at all. Having a crackling fire on the screen makes for a nice atmosphere.

Sending hugs🤗🤗

March 13, 2023

Oh Carmie....so the vaccine really upended your system, I am so SO sorry! It makes me so 😡 as a nurse, but I'll not go there. Do they feel the inflammation is what is causing the breathing issues Carmie? I found that even though a diet was to be anti inflammatory or a food 'lower' in histamine, there were certain of them that, for me, were inflammatory and I had to stop them. I journal daily anyway so added the foods I was eating at each meal and in between as well as any supplements or meds. I try something new and wait 2 weeks to see if anything pops up. I have done so much research on my own and there are other things in food that have and can be an issue like phenols or sulphur/thiols, etc. IDK if this helps at all. My heart is so going out to you, Carmie. If there is anything I can do or help in any way let me know. Take care dear Carmie.💜

March 18, 2023

Hi there Becky,

Thanks for your concern. I’m on top of my diet, but I appreciate your input. I’ve managed to go into remission in the past with the diet I’m on now, it’s just that the vaccine has put me in a year and a half or so flare now.

Anyway, I’m going to write a gratitude list, I haven’t done one in a while. My CFS brain fog has been so severe, can’t think at times to save my life.

1. I dropped ⬇️another 0.05 of the Seroquel yesterday, so now I’m at 3.45mg. I held the drop before that for 7 weeks. I’m going like a snail, but I’m grateful for small steps forward🐌🐌🐌🐌

2. I updosed⬆️ my low dose naltrexone from 0.75mg to 1mg yesterday too and all good, it hasn’t ramped up my withdrawals. It was only a week since my last updose, but I’m going to see if I can tolerate a 0.25mg updose weekly, instead of fortnightly so I can get to 4.50mg quicker. My integrative doctor said to try it and if it doesn’t affect me to continue. She wanted me to originally do 0.50mg updoses a fortnight but I asked her for 0.25mg compounded capsules so I could go slower. If I manage to do 0.25mg weekly I’ll be doing the 0.50mg a fortnight anyway, except not all in one go.

3. My integrative doctor is fabulous and always really listens and works with whatever you want to do.

4. I sat near the river with my husband and his carer yesterday, it was overlooking a beautiful big bridge and the inner city. It’s a nice spot. It was a really hot day with hardly any wind, but it was quite comfy near the water. The poor carer was really feeling the heat but he suggested the spot we went to. I’ve been there before, there’s restaurants all along there. We watched all the water craft, there were jet skiers, boats and a group of people paddling their little canoes.

5. I’m really scared at this moment as my breathing is so intense, but I’m trying to focus on other things. I’m grateful for distractions.

6. My cat just jumped up on the bed and she’s lying next to me now. She’s not a lap cat, but she is a sit right next to you cat😺

7. My habit challenges are still going well. Still no noise before 9am or after 5pm. My next thing was springing up as soon as my alarm goes off at 7pm and taking my meds. That’s going really well now too. I’m keeping that habit as well, no more forgetting whether I took a dose or not.

8. I saw a bengal cat at a park near the beach the other day. He was so cute and playful, he was on a leash and his name was Skeeter and he looked like a little leopard. I’ve never seen a bengal cat before.

9. I just realised it’s nearly 8pm and I haven’t eaten dinner yet. I’m grateful for food.

10. I’m grateful for the cool breeze of my fan.

Okay, I better make myself a bite to eat. I’m really scared tonight with my breathing, but I’m distracting myself away. Life is scary.

Sending hugs🤗

March 25, 2023

Okay, gratitude list time⏰ I’m trying really hard to keep my spirits up.

1. I’m glad I went to the dentist 🦷 yesterday and got a new filling, I had some decay in a wisdom tooth, I still have all my wisdom teeth. I want to get all these things done before winter comes and there are too many viruses around and I have to put myself into isolation again. Replaced two mercury fillings this year too. So all good on the dental front. Just have a couple of spots of wear and tear which I’ll get to one day, but they’re nothing important. No decay and no mercury fillings now. Woohoo! I’ll have to get a custom made splint one day too as I grind my teeth. Dentists are so expensive.

2. Before going to the dentist I went to a park near the river with my husband and his carer. It was so peaceful, the trees are glorious and the serenity is good for the soul🌳🌳🌳🌳. I had a cup of tea at an outdoor cafe. The carer dropped me of at the dentist and my friends picked me up afterwards.

3. This particular carer of my husband lives in the country and he grows fruit and veggies for himself, all organic. He gave me some purple sweet potato🍠 and some olives🫒 that he cured in salt. They were delish!😋

4. A friend of mine printed out all the new medical directive forms. I’ve been wanting to do that for ages too. I can’t focus enough to fill them out at the moment though. At least I have the papers😁. One step at a time. I’m trying to get on top of things that really need doing. I’m just so very sick and everything is overwhelming.

5. I’ve managed to read a little of my John Grisham novel here and there, only a few chapters to go📖. My CFS brain fog stops me from reading as much as I like, so I do it in dribs and drabs. Have a few more John Grisham novels that I’d like to read too📚📚

6. I had enough strength to do a bit of housework today. I keep falling behind because of my health, I need to have some kind of system. The Flylady system is pretty good, but I have to make one small thing a habit at a time. Also, somehow incorporate the 80/20 rule. I actually haven’t thought about the 80/20 rule for ages, I would like to incorporate that into more parts of my life.

7. Speaking of habits, the first habit I started this year is still going strong. Love my quiet morning and evening time. The second habit is now slowly getting ingrained too. I set my alarm⏰to 7pm and as soon as it goes off, I jump up and take my meds.

8. I’m grateful once habits that I’ve started stick and just become automatic and I don’t have to think about them anymore. My recent habit is as soon as the alarm goes off at 5pm I have a shower 🚿 straight away. When you’re really sick you keep putting things off until later and later in the day, it’s best for me to just get up and do the necessary things one has to do, so I don’t have to think about it anymore. It’s over and done with. I only set two permanent alarms during the day at the moment, one at 5pm and one at 7pm.

9. I managed to updose the low dose naltrexone to 1.25mg now. My withdrawals are still okay despite this latest updose. The LDN can cause insomnia though and I have been waking up really early in the morning the last couple of days since the updose. Some people find it helps them sleep. I’m not sure if it’s the LDN that wakes me up or not, but LDN creates lots of endorphins early in the morning. I read that if it is the LDN that causes insomnia it usually settles in time.

10. I’m drinking icy cold sparkling mineral water, love it!

Well, I finally managed another gratitude list after not doing one for a week. I might finish those last few chapters of my novel now.

💛💛💛

March 25, 2023

Right on, Carmie. Sitting in the park sounds awesome! It sounds like you have your dental routine figured out. I remember an anaesthetic shot during my taper messing me up for a week or something. Still not the best fun, hey. Brave of you 🙂

Naltrexone is what they use to crash tackle opiate ODs, isn't it? If Morphine is so named for inducing sleep, I could see insomnia being a result of its opposite. I hope it is helping. Grats also on your latest cut.

Enjoy your book :-)

*hugs* hayduke

March 25, 2023

43 minutes ago, hayduke said:

Right on, Carmie. Sitting in the park sounds awesome! It sounds like you have your dental routine figured out. I remember an anaesthetic shot during my taper messing me up for a week or something. Still not the best fun, hey. Brave of you 🙂

Naltrexone is what they use to crash tackle opiate ODs, isn't it? If Morphine is so named for inducing sleep, I could see insomnia being a result of its opposite. I hope it is helping. Grats also on your latest cut.

Enjoy your book 🙂

*hugs* hayduke

Thanks Hayduke,

I just saw your new post about your family, I hope you’re okay.

The dentist was fine, I had no problems with the anaesthesia. I’m sorry that it affected you when you went, but I’m glad it was only for a week. I read too that someone was affected by just the numbing cream also. We are so sensitive to many things when in withdrawals.

Yes, naltrexone in high doses, such as 50mg to 100 mg is used for people with drug and alcohol problems. It blocks the opioid receptors. In lower doses, up to 4.50mg it’s used for inflammation. I’m hoping the LDN, along with a ton of other supplements, will help me to get into remission from this immune flare that’s never ending. It’s awful struggling to breathe 24/7. I’m on supplements that are supposed to help with the spike protein too. I haven’t been on these things very long yet and I’m only at 1.25mg of the low dose naltrexone so far. Updosing slowly.

If any or all of these things work in combination it can still take a long time to go into remission. I’m trying really hard to keep my chin up, not always easy.

I need my immune system to calm down!! It’s behaving badly.

I’ve been concerned about you, I hope you’re okay with all the stress you’re under, sending big hugs your way🤗

March 25, 2023

Just documenting: Slept really well last night. Fell asleep before 9pm and woke up about 5.30am or so this morning. I pretty much slept for eight hours, which I rarely do. The last couple of mornings I woke up extremely early, like 3am or so. The waking up really early happened after my last updose of low dose naltrexone (LDN) to 1.25mg. I’m not sure if it was due to that, or just a coincidence. I do know LDN can cause insomnia, or on the other end of the scale, it can help you sleep. It affects everyone differently. If I continue to sleep okay, I’ll updose from 1.25mg to 1.50mg in another four days. If I continue to have early morning wakeups I’ll wait a little longer before I updose. Apparently the insomnia from it is supposed to settle. Let’s see how I sleep tonight.

I’m not sure if it’s the LDN, but I fall asleep pretty okay most of the time now. The only time I tend to not be able to fall asleep well is if my mind is going at a million miles an hour and I can’t switch it off, or I’m extremely distressed because of struggling to breathe. It’s hard to settle when you’re struggling to breathe, but I need to float through it, like Claire Weekes speaks about.

Let’s see what tonight brings. I’m very happy I slept for 8 hours last night though. I only had a couple of pages of my novel left to read last night, but I couldn’t keep my eyes open. It’s a good feeling when you actually know that when you hit the pillow you will fall asleep😴😴😴😴

March 28, 2023

Restorative and sometimes Yin yoga I find amazing for quickly grounding from triggered states and putting my body back to calm and ease. There is little physical stress in the quieter ends of those classes. I like going to a class, but if you have issues with that you might be able to find an instructor who can visit, and bolster with videos.

Really glad you're not having a bad time at the dentists. I miss my old one and his assistant. He was the best.

I still find my supplement shelf evolving through different stages. Curcumin is a nice one, turmeric is pleasant to eat but its flavour doesn't suit every recipe.

Sleep is grand, and I hope the LDN settles well for you.

On 3/25/2023 at 8:13 PM, Carmie said:

I’ve been concerned about you, I hope you’re okay with all the stress you’re under, sending big hugs your way🤗

Oh man, talk about trigger phrases!

Thanks @Carmie, and *hugs* to you.

April 1, 2023

Hi, Carmie. That’s really wonderful news. Falling asleep naturally instead of from exhaustion due to insomnia (or akathisia) is one of those pleasures I never knew could be taken from me. Now, I relish it so much. Thinking of you.

🧚‍♀️Rosetta

April 14, 2023

Hey there @hayduke @Rosetta

Thanks for popping over. How are you both doing?

Hayduke, I’m just imagining your evolving supplement shelf😁I’m on so many supplements too, I think I rattle when I walk. I just started them all in small doses and waited to see if I got a reaction. Once all was okay, I slowly upped them. I’m trying to calm down my immune system. I’m sure I’ll get on top of this year and and half flare in the end. It’s slow going. Trying to keep my chin up.

Rosetta, yes, it’s great when one can easily fall asleep. I have quite a number of days where it’s easy, but also days where I’m still awake after midnight. Just taking each day as it comes. I’ve got so much on my mind at the moment, and when my mind is racing it’s hard to switch off.

Anyway, time for a gratitude list. Haven’t done one in a while. Here goes:

1. I’m grateful I managed to updose the LDN from 1.25mg to 1.50mg three days ago⬆️ I was hoping to have updosed to 1.75mg by now, but I ended up in a wave that lasted a fortnight 12 days after I tapered the Seroquel 💊 from 3.50mg to 3.45 mg⬇️

I was quite disappointed that the wave lasted so long, as the whole time I’m just thinking: “ I want to updose the low dose naltrexone. “ I need to get to about 4.50mg, but I’m going at a snails pace🐌🐌🐌. I will get there! I’m grateful that so far I’ve managed to get from 0.25mg to 1.50mg as I didn’t know if I’d even be able to take the LDN or not.

2. I’m grateful I’m in a window now🪟

3. I’m grateful that I got to go to the beach the other day with my husband and his carer🌊. It was a really nice day☀️, not too hot or cold. Perfect Queensland weather🏖

4. I’ve been distracting myself with a little project while going through the wave. I have a lot of books 📚📚that can be used for reference, like the 80/20 principle, atomic habits, 7 habits of highly effective people, flow, the little book of hygge etc.

Anyway, I decided to write the main points of each of these books into hardcover notebooks. I then threw the actual books away. They usually just sit there and I never look at them, this is so much handier and not so overwhelming as I have all the info in one place. I skipped a lot of the stuff in the books, like a lot of case notes, and just got to the main points I wanted to remember. I’m actually practicing the 80/20 principle by doing this😄

I’m a bit of a minimalist too, I’m always getting rid of stuff. I’m a hygge type minimalist though, I still like things that make my home cosy, I just love decluttering and getting rid of things I don’t use or like. I’m grateful that my brain allowed me to do the transferring of notes over the last few weeks. I learnt a lot of new things, as well as decluttering. Bonus!

4. While out near the beach I got this cute little shelf, shaped like a boat. My unit is beach themed, love the beach.

5. Had a delicious lunch of sardines🐟 and vegetables. Portuguese sardines are the best! They taste so much better than other sardines. The ones I get are already in olive oil. I’ve still got tins of others that I’ve bought, but they’ve been sitting there for ages as I don’t particularly like them. Maybe I’ll throw them into a recipe of some kind. Gotta get my omega 3’s. I can only take one fish oil capsule a day. If I take more, it ramps up my withdrawals, thus I pretty much eat seafood of some kind every day.

6. I’ve been sticking to a few habits for a while now. My no noise before 9am or after 5pm is well and truly established now. I set the timer for 5pm ⏰and as soon as it goes off, so does all noise. The only exception is white noise or nature sounds if I so desire. This was a one month challenge, but I kept it going because I really liked it.

7. I loved the one month challenge so much that I want to do my next one month challenge soon. Still deciding what I want it to be, too many choices. Yay, for challenges 🎉

8. It’s not a real challenge as such, but I’ve set the alarm for around 7pm⏰ now for ages and as soon as it goes off, I jump up and take my meds. No more forgetting to take my meds. I’m grateful that I’m doing little things that I pretty much do automatically now.

9. The other habit that’s time related too that I do daily now, is to have a shower at 5pm every day. That way I’m all fresh for the evening and I don’t have to keep thinking about when to have my shower. It’s done! I habit stacked the shower to the same time the alarm goes off to turn off noise. I love habit stacking. You’re already doing one thing and you just add something else to it. Once you’ve done it for a while it becomes automatic.

10. I’m grateful for gratitude lists.

💛💛💛

April 14, 2023

My morning musings: Well, it’s nearly 6am. I’ve been awake since about 4.30am or so, I didn’t look at the clock so I don’t know exactly. I slept well though as I fell asleep pretty quickly last night, and I was in bed before 10pm. I’ve been pondering as to what I’d like to do for my next thirty day challenge. I’m trying to simplify my life, incorporate good habits that make my life easier, one’s that are good for my nervous system and my emotional health as well.

I’m so very sick with my breathing problems, chronic fatigue syndrome, plus withdrawals. Everything is overwhelming, so I’m trying to do things that will be good for me. I think I’ve decided that my next thirty day challenge will be no social media or news before 9am. I’ve already made no noise before 9am a habit. It’s great, so good for the nervous system not putting on any kind of noise first thing in the morning. It’s Saturday today, I’m going to start the no social media or news before 9am challenge on Monday. There’s always something in my brain that says it’s best to start on a Monday😁.

Because our nervous systems are so shot due to these meds, and with me, due to CFS and other health problems as well, it’s kind of automatic that we want to distract ourselves with something that’s there at one’s fingertips first thing in the morning. We need a bit of dopamine to help us to cope, a bit of distraction to help us pull our attention away from the scary mornings where we know we have to face another day of withdrawals and whatever other health issues we have. Many of us have really bad cortisol filled mornings when we first wake up too, though that’s not too much of an issue for me a lot of the time. It’s mainly an issue when I’m in a wave.

Well, I’m happy I’ve decided what my next thirty day challenge is going to be. Instead of going straight onto social media or the news before 9am, I’m going to only read positive things and only incorporate things that are good for me. I’ve done some dry skin brushing this morning already to get my lymphatic system going.

I’m on millions of supplements now, I really need to calm down my immune system so that my breathing gets better. I’m sure I’ll get there in the end. I’m on supplements too that break down the spike protein, so hopefully I’ll go into remission again one day. The spike protein and whatever else the vax has done has put me into a massive flare that I’ve been in forever, but I’m determined now to do all I can to try and calm down my immune system. Gotta keep that chin of mine up.

Well, I actually enjoyed writing this morning musing. Maybe I should do more morning musings, as well as my gratitude lists? Once I start the no social media or news in the morning challenge I might still do a morning musing here and there maybe, if I feel up to it. I won’t read other people’s threads during that time though, because it’s interactive and kind of like social media. The aim is to calm down my nervous system first thing in the morning. Journaling helps to do that, just putting one’s thoughts out of one’s head and into writing. It gives one a sense of clarity.

Hope that everyone copes with their day as best they can💛

April 14, 2023

@Carmie

I really like your 30 day challenges and of course the gratitude lists!
I have heard of others in my area mentioning 30 day challenge. I may jump on the wagon. Although I am around 75 day challenge thus far on one life changing habit knock on wood. So I guess I just need to do another one and no social media or news sounds like a good one!

Too funny - you rattle when you walk 😂. My lunch box rattles with them 😂😂.

Keep your chin up Carmie !

April 15, 2023

Hey Carmie

I was wondering if you can share with me how did you did the tapering of the Seroquel. I am on 100mg. Taking 75mg one day and the whole 100mg the next day. I am going through a severe HORRIBLE, HORRIBLE WITHDRAW. I am taking 100mg Immediate release film coated pill.

I don't have a clue how to do this. I am thinking at this point to go back to my normal doses, in other words to stop the tapering until I gather all the information needed to do it successfully. I am not looking for a quick fix. I don't care how long it takes I just want to become successful on it

April 15, 2023

On 4/15/2023 at 7:55 AM, Heath said:

@Carmie

I really like your 30 day challenges and of course the gratitude lists!
I have heard of others in my area mentioning 30 day challenge. I may jump on the wagon. Although I am around 75 day challenge thus far on one life changing habit knock on wood. So I guess I just need to do another one and no social media or news sounds like a good one!

Too funny - you rattle when you walk 😂. My lunch box rattles with them 😂😂.

Keep your chin up Carmie !

Good morning from Australia Heath,

Yes, I’m really enjoying doing 30 day challenges. Good on you for jumping on the band wagon. Yeah, tomorrow I’m going to start the no social media or news before 9am challenge for 30 days and see if I like it and want to continue it. I already have no noise on before 9am, which I’ve found beneficial. I just need to find something else to do first thing in the morning as mornings can be scary when your nervous system is shot from these meds, plus my breathing problems. I need a dopamine hit of some kind to help distract myself first thing. I usually reach for my phone or iPad and do mindless scrolling of social media or the news. They really aren’t good things to do first thing in the morning if you want to calm down your nervous system.

I think I’ll maybe read something positive, do arts and crafts, sit on the balcony with a cup of tea, do dry skin brushing, a little exercise or housework. Lots of options. I usually wake up early, so I have many hours before 9am to fill in with positive things. These things are certainly a better start to the day. Let’s see how I go.

Have a happy day☀️

April 15, 2023

50 minutes ago, Sandra88 said:

Hey Carmie

I was wondering if you can share with me how did you did the tapering of the Seroquel. I am on 100mg. Taking 75mg one day and the whole 100mg the next day. I am going through a severe HORRIBLE, HORRIBLE WITHDRAW. I am taking 100mg Immediate release film coated pill.

I don't have a clue how to do this. I am thinking at this point to go back to my normal doses, in other words to stop the tapering until I gather all the information needed to do it successfully. I am not looking for a quick fix. I don't care how long it takes I just want to become successful on it

Hi Sandra,

I’ll come over to your thread. You need to stay on the same dose every day. You can’t chop and change doses on different days. It destabilises your brain💛

April 17, 2023

I think it’s time to do another gratitude list, so here goes:

1. Today was day one of my next 30 day challenge. This new challenge is no news or social media before 9am. Day one✔️ I love these challenges. The last one was really successful, and I kept it going. Let’s see how this one goes.

2. I wake up really early every morning☀️, so what I did first thing this morning is dry skin brushing. I’ve done heaps of that over the last year. Love the brush that I use. Gotta keep that lymphatic system going.

3. Had a nice little walk before 9am to the shops too to buy a couple of presents🎁🎁 for friends. I only go into shops when I can social distance as I have to be really careful because of my lungs. Early morning is the best time.

4. I’m so extremely grateful for the gift of giving, it makes me very happy😁

5. I never go into supermarkets, but do my grocery shopping online instead, due to my health again. It’s hard to social distance in big supermarkets with people walking up and down aisles. There was hardly anyone in the supermarket early so I actually went in today. The things one can take for granted. I got some veggies 🥦and a couple of household items. I couldn’t think on the spot what I needed as I wasn’t planning to go in there. I haven’t been into a grocery store in forever, though I have been to fruit markets.

6. I love sparkling water, I must order some more with my next online delivery🥤💦💦

7. I have such little energy due to CFS, but I finally managed to get on top of my washing again yesterday.🧺🎉

8. I sent a few cards to friends today too, that made me happy. I want to send more cards. My friends are all so kind and I love sending thank you cards💌💌💌💌

9. Had a delicious lunch of sardines 🐟 and vegetables. Portuguese sardines are yum, others I don’t like that much. I’ve never had fresh sardines, I must try some one day. Trying to get my omega 3’s as my body will only tolerate 1 fish oil capsule a day, any more than that and my withdrawals ramp up.

10. Trying to think of a number ten……..Uhmmmm?🤔………… Oh, yes, it was a gorgeous day outside when I went for my walk before.

…….and another one down😁

💛💛💛💛

April 17, 2023

Okay, some afternoon musings: My breathing is bad, my CFS brain is in lala land and my nervous system is shot from these meds. I’m going to try and focus on positive things that I can incorporate in my life. I’ve done a gratitude list for today, and I’m all set for my next 30 day challenge of no social media or news before 9am every day. Today was day one.

I decided on this challenge a little while ago, as my last challenge seems to be ingrained now. I read this article in a magazine yesterday, and it tied in very well with my new challenge. It reads:

” Most of us start our days more by accident than on purpose. We wake up and blearily paw for our phones, eager to reconnect and see what we’ve missed ( and consequently, find out what the stress du jour will be ). The truth is nothing good can come of you checking your phone first thing….When you pick up your phone first thing, you don’t even give yourself a fighting chance at a good day. Fact: nothing derails a good day faster than a premature procession of stressful emails, a parade of negative news, or a dose of social media induced self-doubt. Of course, it’s hard to resist. Because your devices and apps have been designed very purposefully to hook your attention and make you a fiend for your phone. But it’s worth resisting.

The choice is yours. You can choose to roll over, reach for your phone, and “accidentally” step into the powerful slipstream of anxiety, worry, fear, conflict and FOMO first thing. To allow your day and your vibe to be unintentionally dictated by the storm of input, information, and opinions thundering your way……..”

Love this! It’s so true. This morning I didn’t look at any social media or news before 9am. I still used my iPad to read some positive articles, but maybe once I’ve got the above challenge into a habit I might even try no screens at all before 9am. Then it will be no screens and no noise at that time. Then maybe later on I could incorporate other times of the day with no screens. We’ve become such a staring at screens society. I’m doing one small challenge at a time and then adding the next one. If you go too hard and too fast you end up doing absolutely nothing at all to change the things you want to change in your life. I’m trying to incorporate practices into my life that are good for my well-being.

Anyway, that’s the end of my afternoon musings.

💛💛💛

April 18, 2023

Morning musings: I wanted to catch up with more people on their threads this morning, but my CFS brain fog is pretty intense at this very moment. I’m really struggling to read. Maybe I might be able to come back later in the day.

Anyway, today was day two of the new thirty day challenge: No news📰 or social media 📱before 9am⏰. Boy, it’s tempting to grab your phone or iPad first thing in the morning and scroll aimlessly, especially when your nervous system is shot from these meds and you need a dopamine hit to distract yourself from it. My struggling to breathe was intense when I first woke up too, so a scary morning overall. My go to social media in the morning is always YouTube and checking if anything interesting from my subscriptions has come through. I don’t interact at all on there and chat to others, but YouTube is still social media. Sometimes I get really lost in the comments when it’s a subject I’m really interested in.

Seeing I wasn’t checking social media or news first thing, I actually got around to doing my Mount Everest🏔 worth of dishes🍽🍴🍽🍴🍽. I’ve had such little strength due to my CFS that the dishes keep going by the wayside. I’ve also been dizzy 24/7 for decades ( no one knows why ), and I can’t stand in one spot very long. Anyway, dishes are done. Woohoo!🎉 The woohoo-ing won’t last though, because there will always be more dishes😁. Why, oh why? 😅

I also prepared my lunch first thing, so don’t have to worry about that now. I just have to heat it up. By 8am I grabbed my iPad ( no, not for social media or news😜), and read some interesting, positive things. Trying to keep my chin up with everything I’m going through. It’s not always easy, but an hour at a time, a minute at a time, a second at a time, does it.

💛💛💛

April 19, 2023

Just in survival mode today. Withdrawals intense. CFS intense. Breathing intense. Just distracting! Distracting! Distracting!💛

April 19, 2023

On 4/14/2023 at 6:49 PM, Carmie said:

Hey there @hayduke @Rosetta

Thanks for popping over. How are you both doing?

Hayduke, I’m just imagining your evolving supplement shelf😁I’m on so many supplements too, I think I rattle when I walk. I just started them all in small doses and waited to see if I got a reaction. Once all was okay, I slowly upped them. I’m trying to calm down my immune system. I’m sure I’ll get on top of this year and and half flare in the end. It’s slow going. Trying to keep my chin up.

Rosetta, yes, it’s great when one can easily fall asleep. I have quite a number of days where it’s easy, but also days where I’m still awake after midnight. Just taking each day as it comes. I’ve got so much on my mind at the moment, and when my mind is racing it’s hard to switch off.

Anyway, time for a gratitude list. Haven’t done one in a while. Here goes:

1. I’m grateful I managed to updose the LDN from 1.25mg to 1.50mg three days ago⬆️ I was hoping to have updosed to 1.75mg by now, but I ended up in a wave that lasted a fortnight 12 days after I tapered the Seroquel 💊 from 3.50mg to 3.45 mg⬇️

I was quite disappointed that the wave lasted so long, as the whole time I’m just thinking: “ I want to updose the low dose naltrexone. “ I need to get to about 4.50mg, but I’m going at a snails pace🐌🐌🐌. I will get there! I’m grateful that so far I’ve managed to get from 0.25mg to 1.50mg as I didn’t know if I’d even be able to take the LDN or not.

2. I’m grateful I’m in a window now🪟

3. I’m grateful that I got to go to the beach the other day with my husband and his carer🌊. It was a really nice day☀️, not too hot or cold. Perfect Queensland weather🏖

4. I’ve been distracting myself with a little project while going through the wave. I have a lot of books 📚📚that can be used for reference, like the 80/20 principle, atomic habits, 7 habits of highly effective people, flow, the little book of hygge etc.

Anyway, I decided to write the main points of each of these books into hardcover notebooks. I then threw the actual books away. They usually just sit there and I never look at them, this is so much handier and not so overwhelming as I have all the info in one place. I skipped a lot of the stuff in the books, like a lot of case notes, and just got to the main points I wanted to remember. I’m actually practicing the 80/20 principle by doing this😄

I’m a bit of a minimalist too, I’m always getting rid of stuff. I’m a hygge type minimalist though, I still like things that make my home cosy, I just love decluttering and getting rid of things I don’t use or like. I’m grateful that my brain allowed me to do the transferring of notes over the last few weeks. I learnt a lot of new things, as well as decluttering. Bonus!

4. While out near the beach I got this cute little shelf, shaped like a boat. My unit is beach themed, love the beach.

5. Had a delicious lunch of sardines🐟 and vegetables. Portuguese sardines are the best! They taste so much better than other sardines. The ones I get are already in olive oil. I’ve still got tins of others that I’ve bought, but they’ve been sitting there for ages as I don’t particularly like them. Maybe I’ll throw them into a recipe of some kind. Gotta get my omega 3’s. I can only take one fish oil capsule a day. If I take more, it ramps up my withdrawals, thus I pretty much eat seafood of some kind every day.

6. I’ve been sticking to a few habits for a while now. My no noise before 9am or after 5pm is well and truly established now. I set the timer for 5pm ⏰and as soon as it goes off, so does all noise. The only exception is white noise or nature sounds if I so desire. This was a one month challenge, but I kept it going because I really liked it.

7. I loved the one month challenge so much that I want to do my next one month challenge soon. Still deciding what I want it to be, too many choices. Yay, for challenges 🎉

8. It’s not a real challenge as such, but I’ve set the alarm for around 7pm⏰ now for ages and as soon as it goes off, I jump up and take my meds. No more forgetting to take my meds. I’m grateful that I’m doing little things that I pretty much do automatically now.

9. The other habit that’s time related too that I do daily now, is to have a shower at 5pm every day. That way I’m all fresh for the evening and I don’t have to keep thinking about when to have my shower. It’s done! I habit stacked the shower to the same time the alarm goes off to turn off noise. I love habit stacking. You’re already doing one thing and you just add something else to it. Once you’ve done it for a while it becomes automatic.

10. I’m grateful for gratitude lists.

💛💛💛

Doin OK, thanks Carmie. The solar eclipse around now is a big deal, my hippy friends tell me! Good to take it easy.

NAC ain't bad right now, and as usual heaps of MgCl foot baths, fish oil and hemp powder. Also turmeric and lysine is good in this virally laden times, last one I bought was labelled 'cold sore' so i labelled it properly myself. Stigmatising nonsense.

Workin hard, time for zzzs. Be well ❤️

April 25, 2023

Glad you’re doing okay @hayduke , friends of mine saw the solar eclipse in Western Australia too. They drove all the way from Melbourne. Looooong drive🚘 They’re always going on really long road trips and they take plane trips as well. One of them is an engineer that works on planes✈️

I think I know which lysine product you’re talking about, I’ve bought that one before too.

Okay, my brain has left the building now. I might come back later n do a gratitude list. Going to have some lunch now🥗🍠🐟

Sending hugs your way🤗

April 25, 2023

I really want to write a gratitude list now, but I can’t keep my eyes open much longer. They’re starting to close, so it’s time to brush my teeth n go to 😴😴😴😴 I am grateful I slept well last night, but the night before I barely slept as my mind was racing at a million miles an hour, I had too much on my mind.

Good night or good morning to anyone reading this💛

April 27, 2023

Okay, finally going to do a gratitude list again. Need to do one to boost my spirits. Here goes:

1. I’m going well with my new 30 day challenge of no social media (including YouTube, which I’m a big fan of) before 9am. Love these challenges. I’m not sure when I started this challenge as I didn’t write it on my calendar📆. It’s in my notes on this thread though, so I’ll check it once I can be bothered. My last 30 day challenge of no noise, except for white noise or nature sounds, before 9am or after 5pm is still going strong a long time after the thirty days. I’m a big fan of doing this now……… Couldn’t help myself, had to go back n check when I started the new challenge. It was the 17 of this month, so it’s been 11 days of no social media or news before 9am. I’m a big fan of doing this too so far too.

2. I’m grateful that I’m surviving this month, even if just barely. I’ve been in lots of waves, breathing is intense and CFS has been so debilitating most days, but I’m surviving somehow. I just keep distracting myself. Yay for distractions🎉Have to keep hanging on for dear life.

3. Last week I had a splendid day out with my husband and his carer. We went to a gorgeous park near the river🌳🌳and the weather couldn’t have been more perfect. Not too hot, not too cold, just right☀️🌤

4. Had a nice cup of English breakfast☕️ tea at an outdoor cafe. I mainly drink herbal teas, but when I’m out and about I like a nice cup of English breakfast. I did buy some organic English breakfast tea for home, but I haven’t touched it yet. I only occasionally drink caffeinated tea.

4. I love this tea I’ve got at the moment, it’s an organic ginger and lemon🍋 rind tea. The ginger is so strong and it so yum😋

5. There were lots of beautiful roses in bloom at the park. Such a myriad of colours too, a delightful sight to behold🌹🌹 I took lots of photos📸. My husband’s carer took photos of me taking photos of the roses😆Whenever I got close to the flowers I had to take my glasses off as they’re for long distance, he took a photo of me with my glasses on my chin🤓😁. So funny! I should have put them on my head.

6. Speaking of glasses, I finally went to the optometrist after many years. My eyesight hasn’t changed much, though I’m starting to get cataracts. Nothing major yet, can still see really clearly with my glasses on. Anyway, I’m grateful I finally got this appointment over and done with. You know how you’ve got things you really need to do, but you just keep putting them off. They end up becoming such a big thing in your mind when they didn’t need to be. It’s a relief to finally get them done. Tick them off your list✔️

7. I’m grateful for my husband’s new support coordinator. She’s so lovely, I spoke to her this week. She helps me with my husband’s NDIS funding to get all the supports he needs, like the external carers that take him out and his physio etc. The last support coordinator changed jobs to a different company, I’m actually glad she did as I really like this new one much better👍. Change is sometimes for the best.

8. Some friends popped over yesterday. I couldn’t invite them in as it’s too risky with my lungs, so we just chatted outdoors. That really brightened my day, I thought they were just popping over for a few minutes but they ended up staying forever. Love my friends😍

9. I’m greatful that I’m starting to find a little joy in photography again📸. For a long time I couldn’t find joy in anything because of my struggling to breathe 24/7. I now look forward to taking photos.

10. Got a lovely message from a friend this morning, which was a good start to the day💛

Well, I finally got around to another gratitude list. Life is extremely hard with my health and withdrawals on top of that. I’m trying my best to get through each day. Some days are just survival mode, other days I find joy. An hour at a time does it.

🧡🧡🧡

April 28, 2023

Time for my gratitude list. I’ve been mainly in survival mode today, just trying my best to get through the day. My breathing is so bad again, so is my CFS. Not much fun dealing with these health issues on top of withdrawals. Going to attempt my list:

1. It’s a tiny bit nippy this evening so I’ve got my heater on, love the warmth of it radiating towards me🔥🔥There’s something so cosy about it, so very hygge. I’m all for cosy.

2. Just had some yummy raspberries, they were absolutely scrumptious😋. Berries are the best.

3. Got my online groceries delivered this morning, it’s so handy🥬🍓🧅🛍

4. Had a nice refreshing shower 🚿🚿🚿

5. I’m really struggling to keep my chin up at the moment, but I’m going to try and get to ten things I’m grateful for. Let’s see… Did some colouring in this morning and yesterday for distraction. I’m too brain dead at the moment to dabble in my own artwork, and colouring in doesn’t take much brainpower. Good distraction🖍

6. I found a writing pen that I really love and the ink doesn’t go through the page🖊. So extremely happy with the pen, I’ve ordered more🖊🖊🖊 It’s the Sakura Pigma Fineliner pen. I got them in 0.02.

7. I love avocados, got three today🥑🥑🥑. They aren’t ripe yet☹️ It’s hard to get avocados just right, either they’re hard or if you blink for a second they’ve already gone off😂

8. I’m grateful for my bed🛌. It’s very comfy, but I hope I can sleep tonight as my breathing is so bad. Nevertheless, I’m extremely grateful for my bed.

9. I’m grateful for books📚📚📚📚📚

10. I’m grateful we can do research so quickly these days, whenever we need to know about something good ol’ Google comes to the rescue📱

My 9pm alarm just went off and I took my LDN ( low dose naltrexone). I’m going to stay at 1.50mg for a while before I start to updose again I think. I need to get up to 4.50mg, but I think it will take a while as my body struggles with too much happening at the same time. I read that LDN can actually cause herxing, thus I need to go slow. I’m barely functional as it is. Maybe I’m herxing as well, who knows what this body of mine is doing???

Speaking of not being functional, my brain again is slowly leaving the building. Bye bye brain👋 It might be time for lights out, whether I fall asleep quickly or not is another matter.

Good night from Australia 😴😴

April 29, 2023

On 4/25/2023 at 12:06 PM, Carmie said:

Glad you’re doing okay @hayduke , friends of mine saw the solar eclipse in Western Australia too. They drove all the way from Melbourne. Looooong drive🚘 They’re always going on really long road trips and they take plane trips as well. One of them is an engineer that works on planes✈️

I think I know which lysine product you’re talking about, I’ve bought that one before too.

Okay, my brain has left the building now. I might come back later n do a gratitude list. Going to have some lunch now🥗🍠🐟

Sending hugs your way🤗

That sounds amazing. I remember driving to Adelaide once long ago from the east coast, then idly wondering about WA, then looking at the map and thinking "maybe another time". Such a huge trip sounds like fun. I also like aeroplane people.

*hugs* Carmie, always nice to hear from you 🙂

April 29, 2023

Hi @hayduke I used to live in Adelaide from about the age of 5 or 6, until I was about 13 years old. Yeah, it would definitely be a long drive to Western Australia, and most of it is desert. I saw lots of photos my friends took. It looked like a great road trip. Adelaide was great, we lived a couple of suburbs away from the beach.

Too brain dead now after doing a lot of reading, so don’t have the brain power to write a gratitude list, but I’m grateful I survived yet another day. It was another awful day of really struggling to breathe. I’m grateful for distractions.

It’s nearly beddy byes soon but my nervous system is so shot, wonder how well I’ll sleep. I slept okay last night. Waking up in the morning is always scary with my breathing. I’m grateful for nights I get to sleep okay, though I wake up just as exhausted due to CFS. I have to laugh now, I just mentioned things I’m grateful for and then ended them in a negative😂 That’s not how it’s supposed to go😜

Okay my brain is leaving the building🤪💛

April 29, 2023

Wishing you some quality healing rest, @Carmie

Gratitude lists can be shorter or longer at will though, eh?

1. Today I didn't have to write a gratitude list!

😄

April 30, 2023

16 hours ago, hayduke said:

Wishing you some quality healing rest, @Carmie

Gratitude lists can be shorter or longer at will though, eh?

1. Today I didn't have to write a gratitude list!

😄

You’re hilarious Hayduke, I love your gratitude list! 😆

After reading a number of threads on here again just now I don’t have much brainpower left to do a gratitude list this evening either. Maybe I should do a gratitude list earlier on in the day. Oh, to have a functioning brain🧠 My malfunctioning CFS foggy brain🙃

Anyway, gonna chill now and have some dinner🥗🥘💛

Carmie: accidently doubling up on Seroquel one day while tapering

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