Carmie: accidently doubling up on Seroquel one day while tapering

[hayduke]

4 hours ago, Carmie said:

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🥗🥘💛

 

I just do them when the mood strikes.  It is a great tool for the darker moments and the lighter ones or the ones in between!

I seem to be falling into polyphasic sleep, probably brought on by shift work.  I am honestly not minding it.

I have uttered "Can't brain" a few times this week!  Hang in there sis.  We're gunning for ya ❤️

 

[Carmie]

12 hours ago, hayduke said:

I just do them when the mood strikes.  It is a great tool for the darker moments and the lighter ones or the ones in between!

I seem to be falling into polyphasic sleep, probably brought on by shift work.  I am honestly not minding it.

I have uttered "Can't brain" a few times this week!  Hang in there sis.  We're gunning for ya ❤️

 

Hey there again Hayduke, I’m glad that polyphasic sleep works for you. My body would never let me do that. Despite being totally fatigued 24/7, due to CFS, I still can’t sleep during the day. When I’m really bad I just lie around being totally non functional. Shift work must be hard.

 

Anyway, time to attempt a gratitude list, here goes: 

 

1. it’s nearly lunch time and I’m looking forward to lunch…..speaking of lunch, excuse me for a sec while I put on some veggies…….Okay, veggies are on. Love veggies🥦🥬🧅🍠🥗

 

2. Love seafood, yesterday I had anchovies, today I’m going to have sardines. I try to eat fish that is high in omega 3 daily🐟One day I’ll have to go to the fish market again and get wild caught fresh seafood. At the moment I’ve been  eating wild caught tinned fish. I love anchovies! I love tuna too, but haven’t eaten it in forever due to the mercury levels. I wonder if I can find one that is lower in mercury? Maybe I can just have tuna again occasionally? Still deciding. I used to eat too much of it.

 

3. I managed to write some letters, but I kept making mistakes because of my brain fog. Take two!📝💌 One tries so hard, but when one’s brain isn’t on one’s side not much one can do. I’m grateful I managed to write a couple. 

 

4. I’m in front of my cosy heater, it’s not really cold, just a tiny bit nippy. I find the heater soothing 🔥I love all seasons.

 

5. My puddy tat is looking cute, she’s all curled up in a ball sleeping soundly😺

 

6. It was lovely waking up this morning to a bright sunny day☀️
 

7. I’m getting groceries delivered this afternoon, looking forward to some berries🫐🍓

 

8. I’m very happy with my pill organiser, as each morning all my supplements are ready to take for the day👍
 

9. I’m grateful I finally managed to wash my dishes as they were turning into Mount Everest again🍽🍽🍴🍴🥄🥄

 

10. I’m grateful to find things I’m grateful for 💙

 

My brain isn’t functioning very well at the moment, but if it picks up a little on I will be back and read a few threads. 
 

Sending hugs🤗

[hayduke]

18 hours ago, Carmie said:

Hey there again Hayduke, I’m glad that polyphasic sleep works for you. My body would never let me do that. Despite being totally fatigued 24/7, due to CFS, I still can’t sleep during the day. When I’m really bad I just lie around being totally non functional. Shift work must be hard.

I wouldn't have dreamt of attempting it even a year ago.  Late last year though after burning off the 15kg of drug fat and staying active on the job, my CFS finally appears to be behind me.  It's usually best to get a steady sleep cycle but for now I feel am adapting very well.  There's no real job security these days - a damn shame compared to what we knew here last century - but I feel OK going with the flow for now.

I think one of these days you will amaze yourself with what healing might come through!  We all know it's never on a schedule.  I am glad you are finding some rest and comfort and wish you still more.

[Carmie]

Good morning @hayduke Glad things are going well for you and thanks for your lovely message. 
 

Okay, time for a gratitude list as I’m feeling utterly miserable, withdrawals are bad, struggling to breathe and have no strength. Let’s see what I can come up with: 

 

1. I’ve got my heater on, it’s comforting🔥My brain is trying to make decisions about different things and you never know what the right decision is, so I’m trying to go into a comfort zone of some kind the best I can. I’ve got so many things on my mind. 

 

2. Still don’t have the strength to get out of bed, I’m very grateful for my comfy bed. I spend so much time in it, so it’s nice to have a comfortable one.

 

3. I love my big U-shaped pillow, it’s so snuggly. I snuggle into it at night time. I usually start off lying on my back due to my breathing problems, but when I feel like it’s not long to go to fall asleep I slide down a little and snuggle into the pillow. Such a great cosy pillow. When I bought my first one I bought it off a company, but afterwards I found they were much cheaper on eBay. Now, any time I want to buy something I always check whether it’s cheaper on EBay. 
 

4. Speaking of being cosy in bed, I love my weighted blanket. I’ve gone through quite a number of them now. Good for the nervous system. I couldn’t do without it. 
 

5. My puddy tat is lying in front of the heater, love animals. I’m actually still in bed, I’ve got my heater up on a little table so that it’s right next to me. I turn around and there’s my cat right in front of it too. She’s not silly, she knows where the comfort is. 
 

6. I’m hoping to make kale chips today. Love kale chips. 
 

7. I’m grateful for distractions of any kind. Distract! Distract! Distract!

 

8. I’m grateful there aren’t a ton of dishes in the sink this morning. I have such little energy and strength that my dishes tend to overwhelm me at times. 
 

9. I’m grateful for nature sounds, rain, waves etc

 

10. I’m grateful I have plenty of food at home. 
 

Another gratitude list done and dusted.

 

💛💛💛

[Onmyway]

7 minutes ago, Carmie said:

🔥My brain is trying to make decisions about different things and you never know what the right decision is, so I’m trying to go into a comfort zone of some kind the best I can. I’ve got so many things on my mind. 

 

 

Love Reading your lists @Carmie! You cheer me up every time. 

 

Making decisions has been quite difficult for me as well in withdrawal. One thing I have to remember is that life is so uncertain that it's never clear what a good decision is. Sometimes we get lucky even when we make decisions that are not well thought out and at other times we can do everything right and things still turn to s**t. And the initial outcome may be bad but years later that same decision leads to something wonderful. 

 

So do your best thinking for a set time and pick. Hope some luck turns it (whether it's a good or bad decision) into a good outcome. 

 

Hope you find some respite soon.  Sending you big, big windows!

Omw 

[Carmie]

… and now for documenting:

 

I’ve been in waves, more than windows since my last drop and I’m wondering if I updosed the LDN too quickly, or it’s because I may have accidentally double dosed on the 28th of February. I’m guessing probably both. 
 

I’ve been on 1.50mg of LDN for the last three weeks. Maybe I need to go back down to 1.25mg or so for a month or two. When I was updosing it from 0.25mg to 1mg it seemed to be all smooth sailing. I’m not coping with struggling to breathe every day and I am hoping the LDN might eventually help, but the specialist wants me to get up to 4.50mg. I wonder if my body will even allow me to do that. Life is hard!
 

By now, it’s been nearly 7 weeks since my drop from 3.50mg to 3.45mg and I haven’t stabilised as yet. Recently I’ve been able to taper ever 7 weeks or so. 
 

Okay, so I’ve decided my plan for now is to go back down to 1.25mg of LDN, I have an appointment with my integrative doctor tomorrow and will get a script. I will also have to hold at 3.45mg for longer. It’s frustrating when one has to hold longer as I’m already tapering such small doses and holding for a really long time. Maybe I’ll have to hold for another month or more, seeing how my body and brain copes. 
 

This journey is certainly a hard one and there are so many variables, so much decision making, so many uncertainties. One hour at a time does it, I guess. 
 

💛💛💛

[Carmie]

5 minutes ago, Onmyway said:

 

 

Love Reading your lists @Carmie! You cheer me up every time. 

 

Making decisions has been quite difficult for me as well in withdrawal. One thing I have to remember is that life is so uncertain that it's never clear what a good decision is. Sometimes we get lucky even when we make decisions that are not well thought out and at other times we can do everything right and things still turn to s**t. And the initial outcome may be bad but years later that same decision leads to something wonderful. 

 

So do your best thinking for a set time and pick. Hope some luck turns it (whether it's a good or bad decision) into a good outcome. 

 

Hope you find some respite soon.  Sending you big, big windows!

Omw 

Hi there @Onmyway

 

Lovely to hear from you, I was just doing some documenting on my thread while you were writing on it at the same time. Snap!😁Thank you for your kind message, I’m glad my gratitude lists cheer you up, I’m trying to cheer myself up too as I’m struggling so much. Have to keep thinking of things to be grateful for so I don’t spiral too much. 

 

Yeah, decisions can be hard in all aspects of life. At the moment I’m trying to decide how to go forward with the LDN, as documented above. I might have to lower the dose again for a while and see if the withdrawals stabilise as I seem to be in more waves than windows with this last drop. It’s always hard to know what to do. Do I wait it out and see if I stabilise on 1.50mg of LDN or do I lower it a little? Will I even stabilise if I do stay at 1.50mg? Did I updose it too quickly? Will going back down to 1.25mg help me to eventually stabilise again or do I need to go back down to 1mg? How long will it take me to get to 4.50mg of LDN? Will I ever get to 4.50mg? Sooooooo many questions with no answers, only time will tell with any of these questions.I really need some hope that this flare will end at some stage and I’ll get a bit of respite from my breathing problems.

 

Well, I’ve made a decision to go back down to 1.25mg of LDN. Let’s see if I stabilise on that after a month. I’ll  have to hold my last drop of the Seroquel for longer, it’s been nearly two months so far. It seems so ridiculous that a teeny tiny drop of Seroquel can take 3months or so to stabilise from. These meds are deadly. The way I’m going I’ll still be tapering them on my death bed😁
 

Hope you’re coping as best you can, sending hugs your way🤗💛

[hayduke]

1 hour ago, Carmie said:

4. Speaking of being cosy in bed, I love my weighted blanket. I’ve gone through quite a number of them now. Good for the nervous system. I couldn’t do without it. 

I have mine on the bed at the moment too!  It's woven heavy trace so breathes but also insulates with more layers trapping the air gap.  And a sweet Mexican blanket on top.

[Rosetta]

I’m thinking about you, Carmie. - 🧚‍♀️Rosetta

[Carmie]

Hello dear @hayduke @Rosetta , thank you for your messages. I hope you’re both having a delightful day. So you love weighted blankets too Hayduke. They’re great, aren’t they? I can’t do without one now. 
 

Well, here we go again, gratitude list time: 

 

1. I managed to walk to the letterbox a block away to send some letters I wrote. It was good to finally get them sent📮. I struggled to walk there though and on the way back I took out all the bins from the unit complex here and I nearly collapsed and struggled to make it to my front door. I had to lie down and it took me an hour or two to recover. A really bad CFS day. Seeing though this is a gratitude list, again I’m happy to have sent my letters😜
 

Pushing through is not always a good idea when you’re extremely sick and I was silly to take the bins out when I was already barely functional. I’m usually pretty good and balanced as regards staying within my limits, but all the bins were full to the top as one neighbour moved out and sometimes if I don’t take the bins out they don’t get taken out and then I wouldn’t have anywhere to throw the garbage. It’s funny that sometimes a neighbour ( don’t know which one ) takes out all the bins, I do the same, but sometimes there’s only one bin or so out the front. If you’re already there taking your own bin out you might as well take the others out too. People are weird.  There are only 5 bins and every fortnight two recycling bins as well. Well that’s enough of garbage talk😁
 

2. I just had an appointment with my integrative doctor via phone, she’s just absolutely lovely. I got some more scripts for a couple of the supplements I’ve nearly run out of. I’ll have to see her in person next time to continue to get the Medicare rebate as I’ve been doing the phone appointments for most of the last twelve months. They have to see you in person at least once or twice a year. Integrative doctors aren’t cheap and it’s nice to get a small rebate back. I can’t say enough for integrative doctors as they think outside the box, and I’m glad I found a really lovely empathetic one. 
 

3. I also got some scripts for the LDN. I asked for one script of 1.25mg and one of 0.25mg. I’ve actually been on 1.50mg for the last three weeks, but I haven’t been able to stabilise from my last taper of the Seroquel yet, so I might go back down to 1.25mg of the LDN for a while. The 0.25mg will help me to updose again when my body lets me. I think I’ll stay at 1.50mg for a few more days, or maybe a week and see if I do stabilise. If not, I’ll go back down. Just taking a day at a time and making decisions a day at a time. There are so many variables in all the decisions we make and because we don’t know the outcome of each one it make it hard to know what to do at times. It’s been about 7 weeks since my last taper of 3.50mg to 3.45mg, but it looks like I might be holding this for three months or more by the looks of it, who knows? One day at a time is all we can do. 
 

I’m grateful that my integrative doctor is happy to work with me and try and get the LDN compounded to whatever I need it to be compounded to. She goes: “ I’ll leave it up to you, you know what you’re doing!”😂 

 

4. I’m seeing friends on Zoom tonight, which I’m looking forward too. 
 

5. Got some lovely sms’s from a couple of friends today. One wants to catch up with me in the park around the corner in the near future, that will be delightful. She’s just been on a holiday for a few weeks to America, her husband had some work he had to do over there. She’ll be able to tell me all about her experience. I’ll have to meet her on a day I’m not on the verge of collapse. 
 

6. I’m grateful I received some more pens and markers today. Good ol’ EBay. I’m so happy with my new writing pens, they don’t go through the page. Woohoo!

 

7. I’m grateful for showers, going to have one as soon as I finish my gratitude list. 
 

8. I love stickers and got some more in the mail today too. Heading towards 60 and am still like a ten year old. 
 

9. I also received a couple of little organising your day journals. Very cute. 
 

10. As usual, I’m a big fan of cold sparkling water. 

 

Okay all done, I hope it all makes sense as can’t be bothered proofreading. It’s off to the shower I go. 
 

💛💛

 

Edited May 3, 2023 by Carmie
Left too much on the bottom

[hayduke]

Yeah the weighted blankets are awesome!

 

I reckon it's healthy to get up and push a bit harder sometimes and see where you're up to, sometimes you might find you've healed more than you think.  But I fully agree allow 2-3x the rest periods after to recuperate.  Building up gently after that might be a nudge to a gentle rise.

 

You ever try CoQ10, it's said to be good for mitochondrial damage from these druggings.  I found it useful for a while.  One day a friend said I was a bit hyper so I knocked it off!  I am sure it helped till then.

 

Cheers

[hayduke]

2 hours ago, Carmie said:

8. I love stickers and got some more in the mail today too. Heading towards 60 and am still like a ten year old. 

You can print your own too.  I am still looking for weather proof paper sticker sheets but I bet you can get them. ❤️

[Carmie]

Good morning @hayduke Yes, I’ve been on all sorts of supplements. That’s funny the CoQ10 eventually made you hyperactive. It’s actually used for people who are hyperactive. It must have had a paradoxical effect on you. 
 

Making stickers sounds like a fun pastime. I don’t have a computer, I’m happy to get my stickers online, but I hope you have fun making yours. 
 

Woke up in a bit of fear this morning, no doubt high cortisol, plus in a wave, plus my usual struggling to breathe. Needed to distract myself straight away which I did. The first thing I did was put on the sound of a crackling fire, I find that very soothing. I’ve got a habit now of no noise before 9am except for nature sounds and I’m finding lately if I wake up in a bit of fear the sound of a crackling fire is very soothing. 
 

Hope you have a happy day☀️

[Carmie]

Hope everyone is coping as best they can, I think I need a few days off from reading everyone’s sad stories. I’m really struggling as well with my breathing problems, I’m in a wave too and my CFS is really severe. I surprised myself that I was able to interact on here today as much as I did. 
 

Sending hugs to one and all🤗🤗

[hayduke]

*hugs*

[Alwayshere]

I flipped through the pages a bit, loved the gratitude journal. Sorry for my English, it's google translate. I will come back on occasion.

Sending you hugs @Carmie !

[Carmie]

On 5/4/2023 at 4:04 PM, hayduke said:

*hugs*

 

On 5/6/2023 at 6:10 AM, Alwayshere said:

I flipped through the pages a bit, loved the gratitude journal. Sorry for my English, it's google translate. I will come back on occasion.

Sending you hugs @Carmie !

Thanks for the hugs Hayduke and Alwayshere, 

 

I find that gratitude lists help me to try and focus on positive things as I’m really sick with health problems, as well as going through withdrawals. I’ve never used Google translate, I can understand what you’re saying perfectly. 
 

Okay, seeing you spoke about gratitude lists, I think it’s time for another one😁: 

 

1. I had a delicious lunch and dinner. Yesterday I managed to do a bunch of batch cooking. I cooked a whole heap of vegetables separately, and today I just had to choose which ones I felt like eating and then heat them up. I put them all separately on the plate, but in the end I mixed them all together, poured a gallon n a half of olive oil on them🫒😂 .. It was yum with a little bit of fish. 
 

I’m grateful when I have the strength to batch cook, I’m grateful for olive oil ( it’s the Spanish in me, dad was Spanish).

 

2. I’m grateful for vegetables, yesterday I had roasted okra again. You have to eat that straight away so you can’t keep it for another day. 
 

Today’s veggie plate consisted of sautéed cabbage(wombok), sautéed onions, steamed cauliflower, steamed sweet potato and boiled asparagus. Still got plenty left for the next few days. 
 

Isn’t everything better with onions?🧅🧅🧅🧅🧅🧅🧅😄

 

3. Seeing I’m on a roll with the food thing, got some yummy healthy plantain chips today from the health food store adjacent to the chemist. Why do things that are healthy always cost so much more than other stuff?  Plain chips made with potatoes ( nightshades that cause inflammation) and the really inflammatory oils they use to fry them in to make chips are so cheap. Anyway, yay for healthy alternatives.

 

3. Got my script for the quetiapine today. It’s always a relief when I get a new script filled. I’ve got plenty here to last for ages, but when one gets a new script the expiry date is further away. This box doesn’t expire until January 2026. I’ve used meds past the expiry date, but don’t like using them too far past the expiry date because the potency might have weakened. There are 60 tablets in every box and I make three or four doses with each tablet, I don’t like leaving the mixture in the fridge any more than 4 days. Whatever is left I throw out. One box lasts a long time. 
 

4. Finally went to the local GP as I had to get a referral for a new psychiatrist and I wanted to get a script for the quetiapine. He doesn’t like prescribing it, he’s only done it once before because I couldn’t get to my psychiatrist. He did it again this time though as I was asking for a referral to a new psych. My old one retired, I only saw him to get my script. 

I was procrastinating going to the local GP because I always feel like I’m being gaslighted when it comes to different health issues. I’ve been gaslighted so much by the medical profession that now I don’t trust them at all. If something doesn’t show up in a particular test there’s nothing wrong with you???? You can have such severe symptoms and they look at you like you’re faking them. It can be such a traumatic experience. 
 

Anyway, back to gratitude. I’m grateful for my script and I’m grateful for the referral.

 

5. I have to say, though, that I’m extremely grateful for my integrative doctor, she really listens and believes what you say. 
 

6.  When I told my integrative doctor on the phone that I needed a new psych but was scared of them because they just push meds, she recommended Dr Robert Purssey. He’s actually mentioned on this site, but someone said that he recommended tapering a bit quicker than what is recommended here, so I totally won’t be doing that if they says that.
 

There’s no hurry to see him as I have plenty of quetiapine for now. He does ACT therapy though, which I didn’t know anything about. It’s really interesting though and I can see it being quite beneficial. There’s actually a thread on Dr Robert Purssey and ACT on this site. I bought the book “The Happiness Trap,” by Russ Harris, which is all about ACT therapy. I’ve only read a couple of chapters so far. I’d like to finish the book before I see the new psych.
 

 7. Last week I went to the beach with my husband and his carer. It’s just the best being near the water. My happy place!

 

8. I love the feeling of sand, I was lying in the sand,  putting it through my hands, love that feeling. 
 

9. I got some really great photos that day, including one of a spectacular cloud formation. 
 

10. I’m in a window🎉

 

Well, it’s nearly time for beddy byes, good night from Australia 😴😴😴💛

[Kostas]

Hοοray  Carmie !😊

[Oaktree1]

Hi Carmie

 

That cheered me right up to read that.  I love reading about your food experiments.  The vegetable medley sounded lovely.  I would love to try Okra but you can't get it here except in specialist stores. It is great that you were able to have a day at the beach with your husband -  being outdoors in a place that you love is the best. The weather is dire here - non stop rain.  

 

Thank goodness you have a decent integrative doctor.  I feel more or less the same as you now about doctors.  My doctor thinks that I am still taking 15mg Mirtazapine as does my local psyche hospital.  That is how I was able to build up a stash of the stuff.   I gave up trying to get psyche doctors to see my point of view re drugs and diagnoses some time ago although I do have time for orthopaedic surgeons, my GP, physiotherapists and my OB GYN.   

 

 I think you realise you have no option but to meet with a psyche to get a repeat prescription.  No harm when you've finished the book to give Dr Purssey a shot and if you don't like his approach start the process of getting a referral to someone else.  I dread going to see psyche's but I have to to keep up my payment.  When I attend I am always very complimentary and ask them about themselves and commiserate with them about the long hours they work.   The main aim is to get a repeat prescription so that you can continue safely with your taper - the means justify the ends as they say.  Altostrata's advice on how to deal with doctors is really good.  Medical gaslighting is awful - it is just awful - I am sorry you had to deal with that - so upsetting when people who are meant to help you do the opposite.

 

That is a great gratitude list though the best for some time

 

Oaktree1

[Carmie]

Hey there @Kostas @Oaktree1  Thanks for visiting, 

 

Hooray, indeed Kostas. It’s always good to be in a window. My nerves are still totally shot from these meds, even in a window, but at least it’s not as intense. 
 

I’m glad my gratitude list cheered you up Oaktree, I try and do one here and there. My brain fog has been so bad the last few days that I haven’t been able to do much reading or writing. No brain, no gain, as they say. Yes, I’m very happy with my integrative doctor, I’m glad to hear that you have some nice doctors too. 
 

My last psych knew I was tapering my meds, so does my local doctor and my integrative doctor. I’m glad you’ve got extra meds for just in case. I do too. One of my concerns is always if they no longer make the generic meds I’m on as any change affects me really badly. 
 

I haven’t had any brain power to read any more of the book on ACT therapy, but I’ve been listening to some YouTube videos. I like listening to Doc Snipes, she has a PhD in counselling and the videos she puts out are actually aimed at teaching counsellors, nurses, social workers etc. She’s quite a quick speaker and when my brain is in lala land I turn the speed to 0.75. The videos on ACT are really good, it’s really all about no matter what’s happening in your life you need to still move towards things that you enjoy doing and towards things you value. There are lots of practical ways to do this, once I read more of the book, I’ll get more into that. ACT is not about getting rid of your problems or negative emotions, but moving forward and doing things that are good for you despite your problems. I really like that concept. 
 

I can’t focus enough this morning to write a gratitude list, maybe a bit later on. Who knows? Come on brain!!😁

 

Sending hugs🤗💛

[Carmie]

Okie dokie, time for another gratitude list: 

 

1. I went to a lake a few days ago with my husband and his carer. I just love being around water, and I managed to walk around the whole lake. We stopped quite a number of times along the walk. The weather was fabulous☀️🌤It’s autumn here, but we still get warm days, though it gets nippy too. I brought a jacket along, but didn’t end up needing it. 
 

2. There were black swans 🦢🦢at the lake (can’t see a black swan emoji, so white it is😁), as well as a myriad of other birds. We had bird seed to feed them, though I read that they love peas too. Maybe next time I’ll get some frozen peas❄️ and defrost them just before I go there again. The swans were eating the seeds out of my hand, but it was a bit hard for them to grab the tiny little things, and they kept accidentally going for my fingers instead. What I ended up doing was throwing the seeds on the lily pads in the water as it was easier for them to grab the seeds with their long beaks because the greenery was flexible. It’s glorious just sitting near a lake and watching birds. 
 

3. Got some fabulous photos📸 of the swans, I’m finding joy in taking photos again. 
 

4. I tried some persimmon for the first time, I’m a big fan😁I’ve been trying new fruits and vegetables this year, seeing that’s pretty much the main thing I eat. I need variety. I do eat grass fed meat and wild caught seafood as well. I bought a fresh pomegranate for the first time as well, I’ve only ever bought them frozen. When I got this fresh one I cut it in half and tried to scoop out the pomegranate seeds and it was so messy, the red colouring squirted everywhere. I realised later on that’s not how you do it. One has to cut it into smaller sections to scoop it out. 

 

5. My husband’s carer lives on acreage 🌳🌳🌳and he gave me some kale. Kale chips here I come! Oh, yes, and his veggies are organic. He could only save one kale though, the insects got to the others. Now I know why conventional kale has a myriad of pesticides on it. I like to buy organic kale because of this, it gets sold really quickly though. 

 

6. Some friends popped around yesterday, they just stay outside. Anyway, they know I like doing creative stuff and they bought me this string art picture to do. It’s of an owl🦉. It comes with a cute little hammer and everything to hammer in the nails. 🔨🧶
 

7. I’m grateful for the happiness giving brings me as well. I didn’t know my friends were popping over to say hi yesterday, but I had some gifts for the boys. They are these stretchy toys, I got dog ones🐶🐶You can twist them, stretch them, flatten them etc. The boys were so excited, which made me really excited. 

8. I’m grateful for sparkling water, speaking of which, I’m going to grab some now……….Ahhh, refreshing!💦💦💦

 

9. I’m grateful that I ended up in a window without having to lower the dose of the LDN. I was going to go back down to 1.25mg from 1.50mg and see if that would help this wave I was in. I wasn’t sure it would work or if it was the LDN that caused the wave and I really need to keep updosing the LDN to help regulate my immune system. In the end I just decided to stay at 1.50mg and I ended up in a window anyway.
 

Now I just have to decide when to updose it to 1.75mg. Decisions! Decisions! Anyway, I’m grateful I stayed at 1.50mg of the low dose naltrexone. Just goes to show that sometimes all we need is time and it’s best not to make any changes. It’s easy to do things in a state of panic because we don’t know what the outcome will be of the different decisions. If we knew the end result it wouldn’t be so hard to make decisions.

 

10. I’m grateful for my heater🔥🔥

 

💛💛💛

[hayduke]

❤️ Carmie

I just tried to record a gratitude list into my mobile phone but I don't think it recorded!  They are awfully unreliable.

I hope you are proud of me I think I got up to 64 and made it to 72 with a few more *ahem* private ones indoors.

Love ya honey

Cheers
hayduke

[Carmie]

Might be best to stick to good ol’ pen and paper if the tape recorder didn’t work @hayduke 📝😁

 

Okay, I thought I’d do my gratitude list first thing in the morning to start my day with something positive, so here goes: 

 

1. It’s raining outside and I just love the sound of the rain🌧💦💦. It gives such a cosy feel to the day. I’m still in bed, I haven’t had the strength to get up yet. 
 

2. Love thirty day challenges and I think it’s about time for another. My first two I kept going after the 30 days and they are now habits. Every morning I don’t have on any noise before 9am ( except nature sounds or white noise, if I so desire ) and I don’t check social media or news before 9am either. Also, I don’t have any noise on after 5pm, except nature sounds or white noise if I feel like that. The majority of the time during those periods it’s totally quiet. I do still watch movies or shows if I feel like it in the evening, but I watch them with the captions on. I think the quiet times are beneficial for my nervous system. 
 

Okay, now as for my next 30 day challenge?🤔I was thinking about total screen free periods, but I think I need to work on a different area of my life next and not get too focused on just one thing. I can go back to that another time. I think I’m going to continue with 30 day challenges and if I still like whatever the challenge is I’ll keep at it after the time is up and turn it into a habit. For me these challenges are all about doing what’s best for me physically, emotionally and mentally. 
 

Now for the next challenge, I’m going to make sure that lights are out by 10pm😴😴. Whether I fall asleep straight away or not doesn’t matter, it’s just about getting to bed at the same time every night. I’ve done that before in the past, I actually was going to bed by 9.30pm at one stage. I might do it at 10pm though to start off with, then in another challenge down the track I can always change it to 9.30pm. I want to get a good routine happening in my life. 
 

3. I’m grateful for habits. Once something becomes a habit you don’t really have to think about it, which gives you time to ponder on more important things. Habits are automatic. They take time to establish, but it’s fabulous once they are. 
 

4. It was a cosy picture here early in the morning. I’ve got my heater on a small table next to my bed and it’s at the same height as my bed. Anyway, it was a bit nippy this morning so I turned it on. My cat jumped on the bed too for the heater and we were all as snug as a bug in a rug🔥🔥I’ve still got it on low. My cat is quite strange when it comes to actually sleeping on my bed at nighttime, she won’t. The funny thing is if I’m on my bed during the day she likes lying next to me, but as soon as it’s time for me to go to sleep, she jumps off the bed😺

 

5. I’m grateful for glasses. What would I do without my reading glasses and long distance glasses?🤓I’m actually writing this with no glasses on, but it’s a strain to read a lot without reading glasses. I’m not a fan of bifocals.

 

6. I’m grateful for books📚📖. I can’t read as much as I like due to CFS brain fog, but nevertheless I love books😍

 

7. I love stationery🖌🖋📝💌📄📜📁📄I get excited when I get new pens, paper etc

 

8. Im grateful I have all the supplements I need at the moment, I will have to get one I’ve almost run out of in a week or so. 
 

10. I’m grateful I’ve got plenty of my meds for now. 
 

The end!🤓

 

💛💛💛

[Carmie]

Just documenting: I’m going to updose my LDN (low dose naltrexone) from 1.50mg to 1.75mg tonight. I’ve been in a window for eleven days so I think it’s time to do an updose. It was so good being in a window as I was in a wave for most of last month. I need to keep updosing the LDN and I have to try and get up to 4.50mg to help modulate my immune system. It can start to work though at lower doses than that if it does work, everyone is different.

 

I’m getting small amounts of reprieve here and there from my breathing problems now which I’m grateful for, though I’m not in remission. Even in the reprieve times my lungs are still heavy, but my breathlessness isn’t quite as intense. I’ve been taking supplements to try and break down the spike protein as well, on top of a million other supplements. I really, really, really hope I go into remission one day again. It’s awful struggling to breathe day in day out. 
 

I tapered the Seroquel from 3.50mg to 3.45mg over two months ago. I’d like to do another drop, but I don’t want to do it at the same time as updosing the LDN. I’ll see how I go on 1.75mg of LDN for a week or so and if I don’t get a reaction I might do my next drop of Seroquel. I’m juggling two different meds now. One I have to updose and the other I have to taper down. I can’t wait until I’m finally on the 4.50mg of LDN as then I can focus on just continuing to taper the Seroquel without worrying about updosing LDN causing waves. I can’t 100% say it was the LDN that caused the wave as I did accidentally double dose one day too. 
 

I did updose the LDN too quickly last month thoigh, I updosed by 0.25mg three weeks in a row. I’m so desperate with my struggling to breathe every day, so I was trying to updose as quick as I could. It’s just so claustrophobic when you struggle to breathe 24/7. Whether it was the cause of the wave or not I’m going to updose slower now. Slow n steady does it. 
 

Anyway, onwards and upwards. No one knows what each day will bring. All I can say, I’ve enjoyed my eleven day window. A day at a time does it. 
 

💛💛💛

[direstraits]

Hi @Carmie

So happy to read about your window and that you got a bit of relief with your breathing 😊

I hope you continue to see improvement.

love reading about your 🐈... they're quirky little creatures, aren't they?

I love my kitty so much.. he's been such a comfort while going through this nightmare.

hope you have a good day 💖

sending hugs to you 🤗🤗🤗

[Carmie]

@direstraits Thanks for popping over and for your kind words. My breathing got intense this evening, but I woke up with it being bearable, so at least I’m getting bits of bearable times at last after nearly two years. 
 

Yes, cats have such interesting quirks, they are all so different too. I’m glad your kitty brings you such comfort.  My cat is on my bed at the moment, but as soon as it’s time for me to go to sleep it’s bye bye from her n off the bed she jumps😸. It’s lights out for me in a minute, I just have to brush my teeth first. I’ve got a new thirty day challenge at the moment and that’s being in bed by 10pm. My eyes are getting really heavy so I better brush my teeth before I go to Zzzzzzz.

 

So far the updose of LDN from 1.50mg to 1.75mg last night is okay. Hope it stays that way, but who knows?

 

Good night from Aussie Land🤗💛

 

[hayduke]

On 5/16/2023 at 7:39 AM, Carmie said:

Might be best to stick to good ol’ pen and paper if the tape recorder didn’t work @hayduke 📝😁

I am a big fan of the old ways myself.  I'm an incorrigible chatter box though I am told and I like to draft song ideas into the recorder too.  Baby shuts me up best but she ain't always around cos of work n stuff.

Hope the LDN keeps working for you and glad your day eased.

Sleep well and wake happy 🙂
 

[Carmie]

Okay, time for gratitude list: 

 

1. I managed to walk to pathology today and get my blood tests 🧫💉done. The endocrinologist wanted new tests. They had trouble finding my veins as usual. I used to have such good veins, but the millions of blood tests I’ve gotten have kind of wrecked that. Just as well I don’t have a problem with the poking and prodding of needles. Anyway, I’m grateful I got another blood test over and done with. 
 

2. It was nice going for a morning walk to pathology. I haven’t had the strength to go for a walk in a week. The air was crisp and the sun was shining. Glorious☀️
 

3. My breathing is bad this evening, but it wasn’t too bad this morning. Grateful to have pockets of time now where it’s bearable. I’m still really scared that these pockets will close again after having no reprieve in nearly two years. I’m trying to keep my chin up though and make the most of them. Still hoping that I might go into remission one day again. I’m grateful for hope. 
 

4. I batch cooked yesterday so I’m extremely grateful I didn’t have to cook today, I just had to heat up the food. I’ve got enough for the next few days too. It’s so great not having to think about what to cook. I cook everything from scratch due to being on the autoimmune diet. I can’t just grab convenience food. 
 

5. Cat antics keep me entertained. I know you love your kitty quirks too @direstraits. I don’t know if I’ve told this before, but my cat eats her food so quickly that she ends up regurgitating it. Now what I do is I have a really long tray and I spread her food all over it. That way she can’t gulp it down too quickly as it’s not all in one spot 😂 It works. 
 

6. I’m glad to say @hayduke that the latest updose of the LDN hasn’t ramped up my withdrawals so far. Tonight is day three of the updose. If I’m still okay, I’ll do my next drop of the Seroquel next week as I haven’t tapered in over two months. 
 

7. I’m just distracting myself from my breathing problems this evening. Love distractions. Distract! Distract! Distract! 
 

8. A friend has offered to take me to see the endocrinologist at the hospital in a week’s time. This kind friend took me the last two times too. The poor thing has to find a new place to rent as they’re selling the place she’s in. She’s got lots of birds, cockatiels. At the moment she’s babysitting someone else’s birds as well, so she well and truly has her hands full. She’s a bit stressed at the moment, as one can imagine. Moving is awful, it’s so much work. We are looking forward to catching up though, I haven’t seen her in a few months. 
 

9. I’m extremely grateful for all of my kind and caring friends. 
 

10….. I just took my meds when my alarm went off. I’m grateful that I now automatically take my meds when the alarm goes off. I’m also grateful that I already had my liquid mixture in the fridge and didn’t have to make up a new batch. I make up a new batch every there or four days. 
 

Well, I think it’s time for dinner soon, just have to heat up my food. Yay! I have to wait another half hour though as I took my serrapeptase and nattokinase and they have to be taken on an empty stomach. They’re enzymes and if you take them with food they‘ll just digest the food, instead of doing what you want them to do. 
 

💛💛💛
 

 

 

 

[hayduke]

26 minutes ago, Carmie said:

6. I’m glad to say @hayduke that the latest updose of the LDN hasn’t ramped up my withdrawals so far. Tonight is day three of the updose. If I’m still okay, I’ll do my next drop of the Seroquel next week as I haven’t tapered in over two months. 

 

Glad to hear you are more comfortable, dear Carmie.

[Carmie]

Okie dokie, I’m too brain dead to read many threads on here today, but I’ll use my tiny bit of brain power to do a short gratitude list: 

 

1. I went for a walk early in the morning and sent a couple of cards to friends, the mailbox is a block away📮 I’m grateful I had the strength to walk there. I sent an Anniversary card and a get well card to friends. 
 

2. I love cards and stationary💌💌💌I’ve got a heaps of cards here, I think I’m going to try and slowly get through them, I love just sending cards to say hi and thank you. I haven’t done a lot of that lately, I used to write so many cards and letters. It really made me happy and it still makes me happy. I have to do it when my brain fog isn’t so bad though. 
 

3. I tried longan fruit today, it’s a relative of lychees. I’m on a quest to try different fruits I haven’t tried before. It’s similar to lychees, but a little more musky. I like it! I’ve liked all the new fruits I’ve tried so far. 
 

4. Except for walking to the mailbox this morning, I’ve been in bed pretty much all day. Haven’t had a lot of strength to do anything physical. Grateful for my bed. 
 

5. My puddy tat is lying on the bed next to me purring her little heart out, 

 

6. YouTube is fabulous, so many different subjects. 
 

7. I really, really, really love my pens and markers that don’t seep through the page. 
 

8. Saw friends on Zoom this afternoon. 
 

9. I’m very happy with my pill organiser, it makes taking my supplements so much easier, as I take so many of them. Trying to calm down my immune system etc. 

 

10. Tonight will be the fifth day since updosing the LDN to 1.75. It hasn’t ramped up my withdrawals. Yay!!

 

I did it😁💛

[Carmie]

Too brain dead to read much or write a gratitude list today, brain fog is severe🤪. Maybe tomorrow. Today I’ll just say I’m soooo extremely grateful for my friends. They really lift my spirits. 
 

Hope everyone is doing as best they can🤗💛🌻

[Rosetta]

Thinking of you!

[direstraits]

Sending love and hugs to you 💞🤗

[Carmie]

41 minutes ago, Rosetta said:

Thinking of you!

 

17 minutes ago, direstraits said:

Sending love and hugs to you 💞🤗

Hello dear Rosetta and Direstraits, thank you for popping around. I hope you’re both doing as best you can. My brain fog is still pretty bad today and I can’t read much, but I think I’ll just do a short gratitude list. Here goes: 

 

1. Got a cute little card from a young one this week, such a sweetheart. She’s actually a twin, there are three girls in the family and they’re all adorable.

 

2. Got a little gift from a friend as well. It’s lovely to be thought of, the being thought of actually makes me happier than gifts. But it’s lovely to receive presents too. 
 

3. Another friend wanted to catch up via Zoom yesterday, which was lovely. I hadn’t chatted to her for ages. 
 

…… Okay, gotta say bye. Friends from Melbourne, who have done a road trip all around Australia, are in Queensland at the moment and they want to catch up with me in the park around the corner. I’m feeling pretty crook, but I don’t know the next time they’ll be up here again, so I’m going to go anyway. I have such little strength though, I’m sure I’ll totally crash when I get home. I’m barely functional now. CFS has been so bad. 
 

Sending hugs🤗

[Carmie]

Okay, going to finish my gratitude list, after I was rudely interrupted😂😂 by my friends.

 

4. It was so extremely exciting to see my friends just now. They were telling me all about their road trip around Australia. They left Melbourne at the beginning of April, they were actually not going to stay away so long. They originally drove to Perth to see the eclipse and then they just kept going. They mainly camped with a tent on top of their four wheel drive, but they also stayed in some motels along the way.  

 

They want me to come down to Melbourne and stay with them, but I can’t get on planes or public transport because of my lungs. When I was in staying in countryside Victoria years ago for a wedding, these friends drove from Melbourne to take me out to dinner one night which was so sweet of them. Lovely memories. 
 

5. They gave me some lovely presents, there are people that just love giving pressies, like these gorgeous souls. I got pressies last time they were in Queensland too. 

 

6. I’m grateful for the happiness that giving presents brings, I’m also a big pressie giver. It makes me so happy to give people gifts. 
 

7. I’m seeing friends on Zoom tonight. I don’t know how much concentration I’ll have as my brain is in lala land🤪
 

8. It was nice sitting in the park.

 

9. The weather was perfect, not too hot or cold. 
 

10. I’m back on my comfy bed. 
 

The end💛

[Carmie]

Can’t switch my brain off tonight, it’s after midnight. There’s so much on my mind. Life is hard when you’re barely functional from illnesses, plus withdrawals. Everything gets overwhelming. I’ll have to start my new thirty day challenge from day one again. It was going to bed by 10pm. My previous challenges are ingrained in me now, but I want to do some tweaking of those too. 
 

I have been falling asleep pretty well lately, but tonight the cogs won’t stop spinning. Naughty cogs! 
 

Anyway, I should turn off the lights now. Zzzzzzzzzzz😴😴