Carmie: accidently doubling up on Seroquel one day while tapering

February 4, 2023

Glad you had a great day by the water with your husband, @Carmie

Sorry you're still having so much trouble breathing,my heart goes out to you ❤️.

I've been feeling sick since right after Christmas.guess I can't fight off things like I used to.

stay strong 💪🤗💗

February 5, 2023

13 hours ago, direstraits said:

Glad you had a great day by the water with your husband, @Carmie

Sorry you're still having so much trouble breathing,my heart goes out to you ❤️.

I've been feeling sick since right after Christmas.guess I can't fight off things like I used to.

stay strong 💪🤗💗

Thank you so much dear direstraits,

I’m really sad to hear you’ve been so sick since December. Did you get Covid or a virus of some other kind? I hope you feel better soon. Have you managed to get to the beach at all? I know you love the water as much as I do, us beach babies, hey!

I’m not all that functional today, am pretty much in bed for most of it again, let’s see if I can think of ten things I’m grateful for:

1. Had delicious frozen raspberries, I like eating them icy.

2. I have comfy clothes.

3. I’m going to have some more whiting for dinner.

4. I have the refreshing breeze of the fan on me.

5. I enjoy the glow of my Himalayan salt lamp.

6. I put the majority of my supplements in dividers for a few days yesterday which is so handy as I didn’t have to look for them all today, I just open the container and take the ones for today. I don’t put the ones that are in the fridge in the container though.

My memory and cognition is severely affected by CFS and all day long I go to do something, I get up and I’ve already forgotten what it was. It doesn’t stress me anymore, I’ve learnt to live with it. My brain just switches off a lot. I just go with the flow now. I’m going to keep on organising my supplements in advance. I’m grateful for my divided container.

I just realised I’ve used the glutathione cream from the fridge already and taken one lot of probiotics, but I forgot the fish oil. Okay, I think I’m kind of proving my point😆. I need to keep those three things in the fridge though. Maybe I should put a daily list next to the supplements in my container and mark off when I’ve taken the things in the fridge. Also, I’ll put my homeopathic meds on that list too. I keep serrapaptase and nattokinase in their original containers as well as they’re enzymes and need to be taken on an empty stomach. If I put them in with all the other supplements I might forget to take them on an empty stomach, then they won’t do what they’re supposed to do and break down scar tissue, they’ll just help digest my food. Also, I take magnesium and iodine in liquid form so I’ll have to put that on my list too. No wonder my brain is exploding, too much to remember.

Okay list: enzymes, fish oil, glutathione cream, probiotics, iodine, liquid magnesium, homeopathic meds… have I forgotten anything??….. Oh, yes, I keep the low dose naltrexone and the P.E.A. in their original containers too. They will go on my list also. I can just tick off when I’ve taken them. I’ve probably forgotten a couple of things still, but I’ll have a look after and add them to the list. Good ol’ lists. In my container mingling together and having a party for the day is the Vitamin C, zinc, curcumin, milk thistle, vitamin D and K. I take some of them a couple of times a day. Speaking of vitamin D I also take calcitriol, the activated vitamin you get via script. Another thing for the list. Boy, when I write down what I’m actually taking it’s a wonder I don’t rattle.

I set a timer in the evening too, but if I don’t take my meds straight away sometimes I can’t remember if I’ve taken them or not, so it’s best as soon as my phone starts singing to get up and take them. I’m grateful we have timers.

I’ve gone to a heap of medical and health appointments lately, I can’t remember the answers to all of the questions I’m asked. Ah, well, can’t do much about that. I can’t remember what happened when. I’m grateful I have a brain though, even if it doesn’t work too well.

7. I just got some lovely messages from a couple of different friends.

8. Okay, okay, what else am I grateful for, I’m grateful I was able to write a few letters before.

9. I’m grateful that YouTube distracted me for a while today.

10. I’m grateful for this site.

I did it, I managed to get to ten.

Sending big hugs🤗🤗

February 7, 2023

Awful, awful day today, struggling to breathe is so intense but I thought I’d try n write a short gratitude list to boost my spirits, just feel like crying all day. Yesterday the struggling to breathe was so intense too. It’s hard to deal with it 24/7 day in, day out. Anyway, here goes:

1. I had a tiny bit of strength yesterday so I went for a walk to a friend’s place to give her a present. She wasn’t home so I just left the card in her letterbox. There was nowhere I could leave the gift, so I’ll have to give it to her some other time. I’m grateful for the gift of giving to others.

2. I struggled to breathe so much while walking to my friend’s place yesterday, I had to sit down along the way, but I’m grateful I was able to go for a little walk. I love being outdoors.

3. I had to pick up something from a post office locker yesterday too, so I’m grateful I got that done.

4. I picked up a magnetised weekly schedule from there, it’s a good size and I’ve put it on my fridge to organise my week.

5. The agency that takes care of my husband’s external carers rang this morning to check how everything was going. So grateful for them.

6. I’m prettying up envelopes at the moment to distract myself from how claustrophobic I’m feeling. I’m grateful for distractions, though still feel like crying all day.

7. I’m grateful for stationery.

8. I’m grateful for my fan on me at the moment, it’s not that hot, but I like the breeze.

9. I’m grateful for movies, shows, YouTube and DVDs. Good ol’ distractions.

10. I’m grateful I’m doing okay so far on low dose naltrexone 0.25mg. Hopefully I’ll be okay to slowly up it in the future, but who knows.

I’m feeling miserable, but I’m grateful I was able to do a gratitude list nonetheless.

💛💛💛

February 7, 2023

Thank you for posting your gratitude list @Carmie. Always lovely to read it. I am sorry breathing is so difficult. I wish I could make it easier for you.

In the meantime sending you hugs.

OMW

February 7, 2023

Hang in there, Carmie. I'm glad you were able to get out for a bit today and glad you were able to make the gratitude list. I hope you can breathe easier.

February 7, 2023

I’m so glad you got outdoors, I find I have a better mindset on the days I can get outside. I’m so sorry breathing has been hard, I hope you find some relief soon.

Thank you for sharing your gratitudes, always brightens my day. It’s so nice you send love to your friends through their mailboxes. I’ve been meaning to write to people on stationary and cards more often!

February 14, 2023

Thanks for all your kind words @Onmyway @ShiningLight @Little I hope you’re all having an enjoyable day. I haven’t been up to writing a gratitude list in the last week, just in survival mode. Today I will attempt another though, so here goes:

1. A friend and I went for a short walk the other day and I was able to cheer her up which made me happy. She was dealing with a ton of emotional stuff and everything is so extremely overwhelming for her as she has ADHD. She had gone in shut down mode with certain things in her life, but the following day she was back doing the things that she hadn’t done in two months. The day after that she messaged me again and was continuing to do these things, it made my heart glad.

I’m grateful that no matter how awful our own circumstances are we can still be of benefit to others.

2. I’ve been doing a million and one crosswords lately. I was in flow yesterday evening and was just doing one after the other. Great distraction. I’ve got quite a few crossword books here and I think I’ll go through them no worries. I’m grateful for distractions.

3. I’m grateful for silence. I usually always have something on, like a podcast or a show or YouTube etc to distract myself from struggling to breathe 24/7, but I don’t think that’s very good for my nervous system. On that note, in the last few days I’ve deliberately made time without any noise. I’ve stopped all noise before 9am and after 4.30pm, thus doing a million crosswords last night.

When my CFS brain fog is bad I’ll have to do things that don’t take too much brain power. I’ll see how I continue to go with these silent times and tweak things here n there if it’s not working for me.

4. I’m watching Star Trek’s The Next Generation again. Love Star Trek. I watched two episodes yesterday, but then I felt like some quiet time. It’s funny, since having morning and evening quiet times I tend to crave more quiet during the day too.

5. I went for a country drive with my husband and one of his carers last week. It’s really hard to enjoy anything when you’re struggling to breathe, but I tried my best to distract myself from it. I’m really grateful for nature. I love road trips too, it’s quite calming being in a car and seeing the gorgeous scenery go by.

We went to the Scenic Rim which is part of Australia’s Great Dividing Range. We have a mountain range that goes pretty much down most of the east of Australia. It goes for 3,500 kilometres through New South Wales, Victoria, Australian Capital Territory and then up here in Queensland.

6. We stopped and chilled at a flower farm, there was a cafe there and outdoor tables and chairs under these magnificent huge trees. Just two trees shaded the outside dining area, they really were humongous. Gazing at them made me happy. The flowers on the farm were delightful to see too. I would have bought some, but they wouldn’t have survived as we were out for the day and it was only morning and quite a long drive back to my place. You get to pick your own flowers. There’s also a lavender farm somewhere near there, I must go there one day too.

7. I took photos again of scenery wherever we stopped. I’ve always loved taking photos, but since this 16 month breathing flare that doesn’t seem to want to end I’ve lost joy in the things that always gave me pleasure in the past. I’m grateful that I felt like taking photos again.

8. I’m grateful for animals, I saw cows and sheep along the way and we also stopped at a camel farm. They sell all kinds of products made from the milk of the camels. I saw a camel feeding it’s calf, so cute. Last time when friends went to that camel farm one of them got nipped by a camel.

9. We stopped at a fruit and veggie store that had heaps of organic produce. I’m all set to make lots of kale chips. I’ve made some already, but still have plenty of kale there. How great would it be to have local fresh organic fruit and veggies close by.

10. I was put in charge of music for the road trip which was cool as I’m a music freak. Again, though, it’s been hard finding joy in anything much due to my breathing, so I’ve hardly been listening to anything much in over a year. It was diverting though playing music in the car. I also play a little more music here and there now since I got rid of commercials on YouTube and YouTube music.

Well, I did it. Life is tough, one hour at a time does it!

💛💛💛💛

February 15, 2023

Just documenting: I upped my low dose naltrexone (LDN) from 0.25mg to 0.50mg last night. All good so far. The endocrinologist wants me to get up to 4.50mg. I’m not sure if it will work or not with my health issues, but, so far, so good as regards not ramping up my withdrawals. Let’s see how I continue to go. I’m upping it by 0.25mg every two weeks all going well.

February 17, 2023

Time for a gratitude list, here goes:

1. Went to a splendid park by the river with my husband n his carer. There are such charming huge trees there with lots of shade. The park has masses of roses, but alas it’s no longer rose season n the ones still there are almost dead n sagging. The rose beds are spectacular when in season though.

I remember going to a wedding reception in that park once too, it was great for the kids who were climbing one of the humongous trees nearby.

2. It’s always pleasurable being near the water, not much happening on the river today as regards water craft, mainly just the CityCats that take passengers from one stop to the next.

3. Had a tasty cup of tea at one of the cafes, we sat outdoors and chilled. The cafe is attached to the Powerhouse, which is an arts centre. After that we went to another nearby outdoor cafe. Good ol’ outside cafes.

4. After we were cafe’d out (I think I just invented a new word) we said under a big tree looking at the river. Lovely sitting in the shade on a warm day. Lovely just being out in nature full stop.

5. I’m grateful I was able to take photos. I’ve lost joy in everything due to my health problems, but I actually enjoyed taking pics again today. Lots of lovely scenery.

6. I’m grateful for seeing the funny side of things. There was this great old wooden door that made a fantastic photo, the photo turned out fab. After I took it I ask the carer to take a photo of me chilling next to the door and when he sent me the photo afterwards I had to laugh. I was trying to look cool with my hand on one hip n then my other arm raised up leaning on the door. You know what I looked like, a teapot! 🫖🤣 Take two!

7. I’m grateful I got all my supplements today that I had run out of. One less thing to think about. I got my liquid magnesium, curcuma, P.E.A. and black seed oil. It’s the first time I’ve got the black seed oil, my integrative doctor wanted me to start on it as well, it’s good for inflammation too. I’ve only taken one tablet so far, I’ll see if it agrees with me or not. I start all supplements slowly to see if I react to them withdrawal wise or digestive wise.

8. I’m grateful I’m lying on my comfy bed now.

9. I’m grateful my friends are always contacting me. If they ring and I don’t feel up to chatting I’ll just message them back and let them know I’ll get back to them. Need to get back to two people at the moment. One wants to catch up via Zoom tomorrow. She just sent me a whole bunch of photos from her trip to Tasmania. I’ve never been there, it looks like such an amazing place. Fabulous scenery.

10. I’m grateful I’m still doing okay with the updose of low dose naltrexone (LDN) from 0.25mg to 0.50mg. Tonight will be the third night of taking it.

Well, another gratitude list down. Not sure what I’m going to do now, I want to do some crosswords, but I don’t have much concentration. Gotta find something to do that doesn’t require noise as I’m doing a no noise before 9am or after 4.30pm trial.
I might just rest for a bit after my day out n then see if I can do crosswords or read. I’ll find something that my CFS brain will allow me to do. I’m really liking the quiet time without noise coming from shows, YouTube etc. They are good distractions when you’re not coping due to health problems and withdrawals, but I found that it’s not so good for my nervous system to have them on all the time. White noise from my air filter is fine, as it’s relaxing. I hadn’t actually put the filter on for ages, but I did this morning again n it was really relaxing.

Anyway, I might make some kale chips now, I’ve got enough kale there to sink a ship.

💛💛💛

February 17, 2023

It was so lovely and peaceful to read about your day! Thank you for sharing your gratitude list, I lived vicariously through you today Appreciate you!

February 18, 2023

17 hours ago, Carmie said:

Time for a gratitude list, here goes:

1. Went to a splendid park by the river with my husband n his carer. There are such charming huge trees there with lots of shade. The park has masses of roses, but alas it’s no longer rose season n the ones still there are almost dead n sagging. The rose beds are spectacular when in season though.

I remember going to a wedding reception in that park once too, it was great for the kids who were climbing one of the humongous trees nearby.

2. It’s always pleasurable being near the water, not much happening on the river today as regards water craft, mainly just the CityCats that take passengers from one stop to the next.

3. Had a tasty cup of tea at one of the cafes, we sat outdoors and chilled. The cafe is attached to the Powerhouse, which is an arts centre. After that we went to another nearby outdoor cafe. Good ol’ outside cafes.

4. After we were cafe’d out (I think I just invented a new word) we said under a big tree looking at the river. Lovely sitting in the shade on a warm day. Lovely just being out in nature full stop.

5. I’m grateful I was able to take photos. I’ve lost joy in everything due to my health problems, but I actually enjoyed taking pics again today. Lots of lovely scenery.

6. I’m grateful for seeing the funny side of things. There was this great old wooden door that made a fantastic photo, the photo turned out fab. After I took it I ask the carer to take a photo of me chilling next to the door and when he sent me the photo afterwards I had to laugh. I was trying to look cool with my hand on one hip n then my other arm raised up leaning on the door. You know what I looked like, a teapot! 🫖🤣 Take two!

7. I’m grateful I got all my supplements today that I had run out of. One less thing to think about. I got my liquid magnesium, curcuma, P.E.A. and black seed oil. It’s the first time I’ve got the black seed oil, my integrative doctor wanted me to start on it as well, it’s good for inflammation too. I’ve only taken one tablet so far, I’ll see if it agrees with me or not. I start all supplements slowly to see if I react to them withdrawal wise or digestive wise.

8. I’m grateful I’m lying on my comfy bed now.

9. I’m grateful my friends are always contacting me. If they ring and I don’t feel up to chatting I’ll just message them back and let them know I’ll get back to them. Need to get back to two people at the moment. One wants to catch up via Zoom tomorrow. She just sent me a whole bunch of photos from her trip to Tasmania. I’ve never been there, it looks like such an amazing place. Fabulous scenery.

10. I’m grateful I’m still doing okay with the updose of low dose naltrexone (LDN) from 0.25mg to 0.50mg. Tonight will be the third night of taking it.

Well, another gratitude list down. Not sure what I’m going to do now, I want to do some crosswords, but I don’t have much concentration. Gotta find something to do that doesn’t require noise as I’m doing a no noise before 9am or after 4.30pm trial.
I might just rest for a bit after my day out n then see if I can do crosswords or read. I’ll find something that my CFS brain will allow me to do. I’m really liking the quiet time without noise coming from shows, YouTube etc. They are good distractions when you’re not coping due to health problems and withdrawals, but I found that it’s not so good for my nervous system to have them on all the time. White noise from my air filter is fine, as it’s relaxing. I hadn’t actually put the filter on for ages, but I did this morning again n it was really relaxing.

Anyway, I might make some kale chips now, I’ve got enough kale there to sink a ship.

💛💛💛

You are such a lovely soul Carmie. Your gratitude lists are on my gratitude list today 😄

February 18, 2023

Tassie is great, you might like the crazy huge art gallery in Hobart that rich poker player opened, it has changed the town completely. The mountain is beautiful, too. I wouldn't go height of summer again but they also have real winter, almost like NZ.

Really, a langourous road tour of the island is the way to go if you can swing it.

February 18, 2023

Glad you had a nice time by the water!

I was thinking, maybe by some miracle when you finally get off the Seroquel, maybe your lung condition will improve! Who knows? Stranger things have happened. 😀

February 18, 2023

1 hour ago, ShiningLight said:

I was thinking, maybe by some miracle when you finally get off the Seroquel, maybe your lung condition will improve! Who knows? Stranger things have happened. 😀

I was reading about this actually, Seroquel seems to affect respiration! When I was taking Gabapentin with it at bedtime, I would wake up gasping for air like I was suddenly at a high altitude. Not happening anymore now that Gabapentin is earlier in the day, but I've been wondering what Seroquel alone was doing after reading about how it affects breathing.

Hoping you have relief soon, Carmie!

February 19, 2023

Hey there @littlebird @ShiningLight

I appreciate your kind thoughts about my breathing problems. They aren’t medication related, but I know that meds can cause breathing problems in some people. I injured my lungs a long time ago n now I’m having some kind of immune response. I go into major flares whenever something stimulates my immune system. This time it was the vax, it’s really ramped up the cytokines n this flare doesn’t seem to want to end. I’ll always have breathing problems, but it will be a year n a half soon with this flare. It doesn’t want to end.

In the past when I’ve had flares from other things they would last a long time, but I’d have reprieve here n there, even a whole week. With this flare there’s no reprieve.

I have to try and calm down the cytokines that have been going crazy. I’m not sure if all the stuff I’m on now will ease it or not, but I’m trying everything I can.

I’m on low dose naltrexone (LDN). I started at 0.25mg and stayed on that for two weeks and then tonight will be the fifth night on 0.50mg. I’m hoping to go up by 0.25mg every fortnight. The endocrinologist wants me to get to 4.50mg. I can only take a day at a time n see if I get any bad reactions.

I just started on blackseed oil and quercertin as well two days ago. I also started P.E.A. a couple of weeks ago and got some curcumin. I’d never heard of blackseed oil or P.E.A. but I’ve done a lot of research now and they are all good for inflammation and also autoimmune diseases. I’ve got a good integrative doctor who is doing her best to help me.

You made me laugh littlebird when you said you were living vicariously through me that day, you’re too cute. I’ve barely had a life except for going to health and medical appointments for nearly a year and a half. I can’t be around crowds because of my lungs n my outings always involve being outdoors in the wild blue yonder. Just as well I’m a big fan of the outdoors, major fan actually. I’ve only been on two outings lately after all that time, but they were delightful. While we aren’t in a wave, I’ll go a few more outings. I also wear a mask in the car, but take it off when we are outdoors.

Hope you’ve both coped okay today💛

February 19, 2023

On 2/18/2023 at 11:18 AM, hayduke said:

You are such a lovely soul Carmie. Your gratitude lists are on my gratitude list today 😄

On 2/18/2023 at 11:20 AM, hayduke said:

Tassie is great, you might like the crazy huge art gallery in Hobart that rich poker player opened, it has changed the town completely. The mountain is beautiful, too. I wouldn't go height of summer again but they also have real winter, almost like NZ.

Really, a langourous road tour of the island is the way to go if you can swing it.

Hiya Hayduke,

Thank you for your kind messages. Tassie certainly looks spectacular. My friends sent me a bunch of photos. They went on mountain hikes and the scenery is just stunning from up there. I can’t go on a plane or be indoors with crowds of people because of my lungs, so flying to Tassie is a no go, but I will admire the scenery in pictures and videos.

I hope that you’ve had a pleasant day and I’m glad you’re doing well these days.

Anyway, I might do a little gratitude list, though I haven’t done anything as I’ve been in bed all day. Good ol’ CFS.

1. I haven’t had the strength to do my dishes for a few days, but I’m grateful I have dishes😁

2. My chubby cat is lying next to me, she’s very contented. She’s lying on my crossword puzzle book now, I might have to move her later…… I ended up moving my book now as I could see she might be in the mood to claw it. I wouldn’t be able to see all the clues then with holes in the pages😸I’m grateful for animals.

3. Crossword puzzles are a great distraction.

4. I’m grateful for the gift of reading, I must start another novel again. I’ve got a few John Grisham ones here that I haven’t read yet.

5. I’m grateful I’ve got a little hope as regards this immune flare. I don’t know if or when it will end, but at least I’m trying things. Let’s hope something works. If it does I know it will take time.

6. I’m grateful for showers, I haven’t had the strength to have one today yet, but I’m looking forward to having one soon before I go to bed. I love that nice n fresh feeling.

7. I can’t think at the moment. Let’s see what else? I’m grateful for peace and quiet. I’m still doing the no noise before 9am or after 4.30pm trial. I’m really liking it. At the moment I’m still using screens, like right now, but I don’t have any volume on. It’s so good for the nervous system not having noise on continually. The only noise I allow is white and relaxing noise, like from my air filter.

8. I’m grateful for doing little trials and then seeing if I want to continue incorporating these things into my life and make them habitual. Tomorrow I might add no screens before 9am or after 4.30pm too and see how that goes and see whether I want to keep it up. I can have a quick look at any important sms’s or emails, but that’s it. It’s actually fun trying new daily routines to see if they work in your life.

I like these little challenges. I’ve seen that quite a few people do thirty day challenges with things they’ve been wanting to incorporate into their lives and it seems to work well. If you want to try something but you feel overwhelmed because you’re thinking about having to do it forever then just do a thirty day challenge. That’s not so overwhelming as you can stop after thirty days. The thing is a lot of people have got such momentum in the thirty days that they continue to incorporate these new habits into their lives. If it wasn’t for you though then you just stop after the thirty days. Easy peasy!

9. Yesterday evening I chilled with a magazine, I haven’t chilled with a magazine in forever. I was actually feeling really calm last night despite all.

10. Okay, I better get up and have a shower. I’m grateful for water, the beach, lakes, oceans, rivers, drinking water etc etc

I didn’t think I’d get through my gratitude list, but somehow my lala land brain did it. Well done brain!

Sending hugs🤗

February 20, 2023

On 2/19/2023 at 9:14 PM, Carmie said:

Thank you for your kind messages. Tassie certainly looks spectacular. My friends sent me a bunch of photos. They went on mountain hikes and the scenery is just stunning from up there. I can’t go on a plane or be indoors with crowds of people because of my lungs, so flying to Tassie is a no go, but I will admire the scenery in pictures and videos.

I hope that you’ve had a pleasant day and I’m glad you’re doing well these days.

There's always the car ferry, though it is a fair way. There are also light planes for charter that don't go up high where the cabins need pressurising.

Cheers, and I would share more gratitude lists I think but my R.S.I still makes using computers pretty horrible. I just say them out loud in the car or something. When I look at all the mess in my life I must be doing ok just to be getting through it!

One foot in front of the other ❤️

February 23, 2023

On 2/20/2023 at 9:29 PM, hayduke said:

There's always the car ferry, though it is a fair way. There are also light planes for charter that don't go up high where the cabins need pressurising.

Cheers, and I would share more gratitude lists I think but my R.S.I still makes using computers pretty horrible. I just say them out loud in the car or something. When I look at all the mess in my life I must be doing ok just to be getting through it!

One foot in front of the other ❤️

Hey Hayduke,

Thanks for popping over. I’m sorry your R.S.I. is so bad. I’ve had it too n have to be careful. Mine isn’t from computer work, but from doing too much crocheting. I changed over to knitting once my wrist settled as you don’t move your wrist as much. I hope it settles for you soon. It took me quite a long time for it to settle. I was doing a ton of crocheting to help me cope with the withdrawals as it was soothing.

Anyway, knitting is now doing the same thing, it’s soothing. I’m actually not making anything in particular at the moment, I’m just knitting for the sake of knitting, it’s a good distraction and the rhythm of it is soothing. Now, I’m not only needing it to help me with withdrawals, but also to help me with struggling to breathe 24/7. Life is tough indeed!!

I have to stay away from crowds as I can’t afford to catch any kind of virus, even the common cold, so planes etc are a no go for me. Catching anything at all would be an absolute disaster.

Anyway, time for a gratitude list, here goes again:

1. Yesterday I caught up with a bunch of my charming friends at the park around the corner from my abode. They are all so kind and considerate. One of my pals put together a list of about four things that she wants to do for me, I had to laugh as I told her that she’s like my personal assistant😂 She does it for love, not pay😁

Today she sent me a photo of her two lads and about at least fifteen other young ones all getting together to make cards for different ones. So lovely and such beautiful young caring souls writing cards to cheer others up!! I gave her boys some artist’s pens a while ago and she had to tell me they were using them today, how sweet. It sounded like a nice get together. I love doing creative stuff. Creativity is the best!!!

2. Speaking of cards, when I was out and about the other day with my husband and his carer I bought a whole heap. There was a store that was almost empty, so I popped in and got heaps of them. I end up adding embellishments to already made cards. I might start making some of my own cards in the future again too. I love giving cards to thank people for all the kind things they do for me.

3. I went out on Tuesday with my husband, as I mentioned, and first off we went to the place that sells fresh seafood again, at the marina. I had my prawns and then bought some whiting to take home. Love seafood.

4. After that we went to an outdoor cafe and chilled there for a while. I had a flavoursome cup of tea and just enjoyed the picturesque scenery as the beach was across the road.

5. I’m grateful I managed to get my blood test today, I needed to get it before I see the endocrinologist again. I had such little energy, but my body managed to get me there. The initial lady couldn’t get any blood out, so another lady tried my other arm and it worked great. Yay!

6. I’m still doing the no noise before 9am or in the evening challenge. One night though I saw my friends on Zoom and after that I had some noise on, but overall I’m still doing okay with the challenge. It’s been about two and a half weeks or so.

I’ve decided for now though to not worry about the no screen challenge during this time because I have to make one thing a habit first, before I go onto the next. Otherwise it gets too overwhelming and I might give up on everything. I’ve got to read Atomic Habits, by James Clear, again. I have such memory problems due to CFS. It’s a fantastic book if you haven’t read it yet.

Also, the other thing I’ve tweaked about the no noise thing in the evening is that I’m starting it at 5pm as 4.30pm sat a little weird in my brain, as it was a half hour. From today it’s no noise after 5pm and I’ve set the timer. As soon as it goes off it’s bye bye noise. It’s after 6pm now and I already turned off the noise an hour ago, but I’m still allowing screens for now, thus I’m here😁

7. It was nice to see one of my husband’s external carers again this week, she was over in Mexico for a month and a half. Since she came back I haven’t been able to join my husband on the day she was on, so it was nice to finally catch up with her again.

8. Speaking of carers, I’m grateful for all my husband’s carers. I’m not sure if I’ll be able to join my husband tomorrow with his Friday external carer as I can pretty much only do outdoor things because I can’t risk catching a virus or cold of any kind, and it might be raining all day tomorrow. We were going to go to an outdoor precinct with cafes etc near the river. It will be nice just chilling on the grass there. Let’s see what happens. One day at a time.

9. My husband’s carers also always ask me if I need any errands done, so when I’m out and about with them I also have personal assistants as well😁

10. I’m struggling sooooo much with my breathing, but I’m grateful I was able to do this gratitude list.

💛💛💛

February 23, 2023

Just documenting: Started a nigella sativa (blackseed oil) and quercertin formula at the beginning of the week. Took 2 capsules to start with, went to 3 capsules yesterday and deciding whether to start 4 today. My integrative doctor wants me to take two in the morning and two in the afternoon. So far I’ve had no bad reaction to these supplements.

I’m also on day 10 after upping my LDN (low dose naltrexone) from 0.25mg to 0.50mg. In another four days I’ll be upping it again to 0.75mg. Let’s see how I go, I might be okay, who knows? Everything is trial and error when it comes to how things will affect one’s withdrawals.

I’m also still doing okay on 2 lots of P.E.A. a day.

The funny thing is that fish oil capsules don’t like me whatsoever, most people find they help. I tried taking fish oil capsules a few times ages ago and my withdrawals ramped up every time. Recently I tried again and I’m managing okay on one capsule, but when I tried upping it to two withdrawals ramped up. Fish oil doesn’t seem to be my friend. I eat fish every day though, so I’m getting my omega 3’s from food anyway.

That’s about it for documentation today, I’m on heaps of supplements, but doing okay on all the ones I’m on. I started them all slowly to see if I’d get a reaction, but all good.

February 24, 2023

@Carmie good that things are going ok with supplements. I am not a huge fan of fish oil either. I have recently been finding vitamin C (extended release - 1000mg a day) quite helpful with cortisol, not sure if it is already among your supplements and whether it might help with the inflammation you are dealing with.

What TV series have you been watching recently? I have started Numbers and find it nice in the background I can't imagine having the quiet hours that you keep. May be slightly addicted to screens here Good on you for managing to stick to it.

I read the Atomic Habits book a while ago. I am generally resistant to habit books but really liked his focus on 'determine your identity' in order to stick to the habits - it was a good insight for me. Have you ever read 'The Brain That Changes Itself' by Norman Doidge? I highly recommend it if you haven't! You can have a look at the various reviews to see if it would be up your alley.

Lovely to see you here more often these days @Carmie You're such a light on these forums! I can see how people would want to spend time with you even if it is difficult with your restrictions.

Hugs,

OMW

Edited February 24, 2023 by Onmyway

February 26, 2023

On 2/24/2023 at 11:21 AM, Onmyway said:

@Carmie good that things are going ok with supplements. I am not a huge fan of fish oil either. I have recently been finding vitamin C (extended release - 1000mg a day) quite helpful with cortisol, not sure if it is already among your supplements and whether it might help with the inflammation you are dealing with.

What TV series have you been watching recently? I have started Numbers and find it nice in the background I can't imagine having the quiet hours that you keep. May be slightly addicted to screens here Good on you for managing to stick to it.

I read the Atomic Habits book a while ago. I am generally resistant to habit books but really liked his focus on 'determine your identity' in order to stick to the habits - it was a good insight for me. Have you ever read 'The Brain That Changes Itself' by Norman Doidge? I highly recommend it if you haven't! You can have a look at the various reviews to see if it would be up your alley.

Lovely to see you here more often these days @Carmie You're such a light on these forums! I can see how people would want to spend time with you even if it is difficult with your restrictions.

Hugs,

OMW

You’re so sweet Onmyway,

Thank you for your kind words. I don’t always feel like a light, I just seem to be surviving at the moment. My light does grow dim, I’m trying so very hard though to keep my chin up, despite the tears. So claustrophobic 24/7. Yes, I do take vitamin C, along with millions of other supplements. The P.E.A. and black seed oil are supposed to help with inflammation too, and I’m on a plethora of other things as well. I shouldn’t have gotten the vaccine, I’ve been in a flare ever since, it doesn’t want to end.

I’ve just bought the first book on low dose naltrexone that was written by the LDN Research Trust. I haven’t read it as yet, but I’ve watched a lot of their videos. I’m hoping my body will allow me to keep updosing. It will take quite a while to get to the dose I need to get up to. I’m on 0.50mg now and going up by 0.25 every fortnight. My endocrinologist wants me to get up to 4.50mg. I really hope my body will allow me to do that, and I really hope it will help this flare, but there are no guarantees so I’m not getting my hopes up too much. At least I have a little hope now.

I haven’t been watching any TV shows or movies this week really, only a couple of episodes of Star Trek and that was it. I’ve been watching YouTube videos on all sorts of different topics. Numbers is a good show, I’m glad you’re enjoying that. Since I’ve been having quiet time before 9am and after 5pm I haven’t actually been in the mood for TV marathons, though I did start White Collar again on my TV in the bedroom a while ago as I bought the DVDs. I use the bedroom TV for DVDs and the lounge room one is Apple TV. I spend more time in the bedroom though due to my health.

That book you mentioned sounds interesting, I googled it. I might get it one day. Thanks for the recommendation.

Okay, time for a quick gratitude list:

1. I’ve got a new vegetable to cook today that I’ve never cooked before, okra. I don’t think it’s a big thing over here in Australia as no one I’ve known has ever mentioned cooking it, though they may have. I was with my husband’s carer when I bought it and she asked me what it was. Dr Gundry is always going on about how good okra is for you, and so I thought I’d try it and I stumbled across some the other day. I’ll roast it.

2. I’m looking forward to making some squid today too. My husband’s carer brought it around for me on Friday while they were out and about. I love squid, my husband only ever used it for bait😁They have wild caught squid at the seafood place.

3. I did a lot of my diamond painting today and yesterday. It was a present and it’s quite large. Good distraction!

4. I did a lot of colouring in yesterday. I have a number of scenery colouring in books. I always grab the pages that have the pictures of the beach or anywhere near water first. Good distraction, especially when you’re too brain dead to do your own arts and crafts. I’d like to do some paper crafts again soon.

5. Finished the last of my crossword books this week, I had heaps of them. They’ve been an amazing distraction. I’ll have to get some more now.

6. Been in bed for most of the day, though I managed to get up and make lunch. I don’t eat until about midday so don’t need to worry about breakfast. I’m not a fan of breakfast and I actually feel worse if I eat breakfast. I’ve done heaps of intermittent fasting and I always skipped breakfast and now my body doesn’t like breakfast, it’s used to starting its eating at noon. My blood sugar levels are so stable because of what I eat, plus doing this. It’s funny how we had the myth of breakfast is the most important meal of the day, that myth has well and truly been thrown out of the window now.

7. I got myself a new backpack, because I used my other one as a go bag if I ever end up in hospital again. I love my new backpack! It’s small and light and fits what I need in it. I was using a big shoulder bag when I was out and about and it’s kind of a nuisance and gets in the way. I’ve been procrastinating so long about getting another backpack. I should get a second one for when this one packs it in. I feel free now that I’m not being hindered by my other bag. It’s good when you want to take photos too as nothing is hindering you.

8. Stickers, I love stickers.

9. I have my lifts sorted for the week. A friend is taking me to the dentist on Wednesday and another friend is taking me to the hospital to see the endocrinologist on Friday. I’m grateful for my friends.

10. Okay, one more to go……Hmmmmm……..I’ve just been at home distracting myself with different things. What else? What else? Oh, yes, I put together a floor lamp that I got online, it was sitting in a box in my spare room for a week. It’s now in the lounge room. I also bought a bedroom side table with a drawer, it came in a box too, but in a million different pieces. I’m too brain dead to figure out how to put it together at the moment, but I’m grateful I got it and I’ll be grateful once it’s put together.

Well, there we have it, another gratitude list down and now I can go and wallow again💛

February 27, 2023

Time for a quick gratitude list. I’ve been in bed for most of the day, good ol’ CFS, but here goes:

1. Did some more of my diamond painting, it’s such a gigantic one. I’ll finish it this week. I think my friend was trying to keep me entertained for years with such a large picture😂 I’m grateful for this kind present and the distraction.

2. I’m grateful for another two little craft projects that I might start after this one. They are presents from other friends, one is macrame kit ( though it looks more like wrapping yarn around something, I’ll have to look at it properly) and the other is a cross stitch kit. I can’t remember if I’ve ever done cross stitch, maybe a long time ago. My memory is so bad. Well, I’ve got a lot to keep me distracted. Actually another friend gave me this really massive cross stitch pattern that she started and didn’t want to finish, I’ve never got around to doing it. I’m deciding whether I want to do it or not, it’s been sitting there forever. First I’d have to figure out how to do it and second if I want to do it😄

Talking about figuring out things, when my brain fog isn’t so bad I’ll have to figure out how to put my bedside table with the drawer together. It’s in a million pieces. Puzzle time!

3. I ran out of crossword puzzles, but I had a find the words puzzle book there so I’ve been doing some of those. I love crosswords though. Puzzles are a great distraction.

4. Watched some of White Collar while knitting. Good distraction.

5. YouTube is a great distraction, millions of topics on everything possible.

6. I loved the okra, massive fan here. I’ve never had it before. I ended up roasting it in the oven. So scrumptious. Will be buying it again. I’ve still got some here that I’ll cook today, you have to eat it straight after you cook it so couldn’t cook extra yesterday. I’m looking forward to the okra.

7. Enjoyed my squid, cooked it all yesterday and had some left over for today. I ate so much of it yesterday on its own. I ended up being so full that I couldn’t make and eat the okra until a few hours later.

8. It’s a lovely sunny day.

9. I can hear birds chirping.

10. Going to have a nice cold glass of water now and then a yummy cup of rooibos tea.

Okay, another one down. Time to get my glass of water. Love water!!

💛💛💛

February 28, 2023

Gratitude list time again:

1. Did some puzzles today, love word puzzles, but my favourite ones are crosswords. I like the arrow word type ones where the clue is in the actual grid, it’s so much easier than having to look back to the questions all the time.

2. I had some delicious raspberries today.

3. I also made a blueberry smoothie. I haven’t had fruit in ages, I’ve just been eating vegetables and seafood. Every now and again I feel like a bit of fruit, but then I may not feel like it for ages.

4. My grocery shopping was home delivered this morning. So handy! They actually had plenty of sweet potato noodles in stock. Yay! Sometimes they run out, they’re very popular.

5. Just started reading a John Grisham novel. Love his books.

6. A friend that I haven’t seen in person for a while is taking me to the dentist tomorrow. We keep in contact, but I’m looking forward to actually seeing her.

7. My husband was out and about again with one of his amazing external carers today. I wanted to join them, but I was too sick. So grateful for these sensational support workers. I’m glad he gets out and about all the time. No fun just being stuck indoors in the care home day in and day out, though it’s a really lovely place and the staff and nurses are fantastic. The gardens downstairs are relaxing too and they even have a little aviary. I’m so grateful that he’s in such a wonderful place.

8. I managed to do a small amount of cleaning, plus cook my meals despite how awful I’m feeling.

9. Love sparkling water, might have some more now.

10. Going to have a shower soon and freshen up. Good ol’ freshening up. It’s a wonderful feeling.

💛💛💛

March 1, 2023

It’s that time again, gratitude list time📝📝

1. No more mercury fillings. Yay! I had two mercury fillings and said bye bye to them today.

2. Some dear friends of mine gave me a lift to the dentist, it was lovely to catch up with them. I was in there for about 2 hours. The dentist isn’t far from the river, so they went for a little boat ride. There’s this one street near by that has these spectacular and massive big trees all down it, it just gorgeous.

3. I picked up some of my supplements that I was running out of: zinc, probiotics and a blackseed oil/quercertin formula. There’s a compounding pharmacy next door to where my dentist and integrative doctor are and I get my supplements there, they are all on prescription from my doctor. I’m grateful I’ve got all my supplements now.

4. While in the pharmacy I ordered another batch of LDN ( low dose naltrexone ). They have to compound it as it’s not FDA approved in the lower doses. I will be updosing from 0.50mg to 0.75mg this week some time. I’m getting the compounding formula in 0.25mg doses as I can updose easily that way. Once I get up to the dose I need to be on and stay on I’ll get them in that dose. It will take me a number of months. I don’t know how I will go with every updose as yet, I can only take a day at a time. I’m grateful I got that ordered today though while I was in there, it’s so hard to get through to them on the phone.

5. Just had a couple of blueberry smoothies, only having soft stuff for 24 hours after the dentist. They were yummy!

6. I’m grateful I’m on no pain after the dentist. I’ve never really had a problem with dentists, I’m quite relaxed in there. Some of my friends are terrified of going. I just lie there and chill out😂

I go to a biocompatible dentist now, they use products that are the least toxic and also get rid of mercury fillings safely. It was funny, while she was drilling out the mercury fillings, her and her assistant had gas masks on😄. They later changed just to the run of the mill surgical masks.

7. Again, I have to say that I’m so grateful for my friends. If I ever need anything done or need to go anywhere, there’s always someone there to help me. We always have an amazing interchange of encouragement.

8. I’m seeing friends on Zoom tonight.

9. Going to have some sparkling water in a minute. Love the fizz.

10. I’m grateful for the internet. You can find information on pretty much anything. I’m grateful for books too, I never read novels online, I prefer them on paper.

💛💛💛

March 1, 2023

Today I'm grateful for a @Carmie gratitude list! I always appreciate these, and a little peek into life on the other side of the world.

11 minutes ago, Carmie said:

I’m grateful for books too, I never read novels online, I prefer them on paper.

I used to be a real holdout on paper books too, until it came to traveling. A kindle definitely cleared up a lot of room and weight in my suitcase (I read fast and always had to bring more than one book).

What finally totally won me over was that I could read any library book instantly on my kindle or phone (I prefer phone because it fits in my hand) and I could read without having the light on. My partner tends to drop off before I do, so putting a screen on dark mode and reading a little is just right for making me drop off.

Plus, my inner child is still amazed with instant book downloads. I used to daydream in class about a magic book that could "refill" itself with anything once I'd finished it, now I've got that! Speaking of which, time to wind down and read my lil handheld library book in the dark because my partner is already asleep and it's about my bedtime.

Thank you for sharing your gratitudes! Glad to hear your wins and joys.

March 2, 2023

Hi @littlebird

Thanks for your kind words.

Good on you if you prefer to read your novels on a tablet. We all do what works for us. Yes, how amazing you can get the wish of your childhood dreams and have one book after another appear on your tablet. That must make you ecstatic.

My brain fog is so severe, I wanted to interact more on here today and write a gratitude list now, but my CFS brain fog won’t let me. Naughty brain! Can I put an order in for a new one?💛

March 2, 2023

12 minutes ago, Carmie said:

My brain fog is so severe, I wanted to interact more on here today and write a gratitude list now, but my CFS brain fog won’t let me. Naughty brain! Can I put an order in for a new one?💛

Hope that order comes in soon! Or a software update on the existing one. Would speech to text work with brain a bit better? Maybe you can dictate your list!

March 2, 2023

13 hours ago, littlebird said:

Hope that order comes in soon! Or a software update on the existing one. Would speech to text work with brain a bit better? Maybe you can dictate your list!

Hey littlebird, hope you have a delightful day. I just woke up not long ago. I’m off to the endocrinologist today.

No, when I struggle to think due to dense clouds of my CFS brain fog dictating is no different, but thanks for the suggestion.

Okay, just wanted to document that I went from 0.50mg of LDN to 0.75mg last night. My withdrawals have ramped up a little this morning. I don’t know if it’s the LDN though or that I may have double dosed my meds a few nights ago. My head was soooooo spacey and I couldn’t remember if I’d already taken my meds or not, so I ended up taking another dose. Again, I don’t know if I double dosed or not though. Silly me! I’ve only done it a few times in my many, many, many years of tapering. No brain, no gain though🤪

Now I’ll have to decide whether to keep going with the 0.75mg of LDN or go back down to 0.50mg tonight. I’ll see how I fare for the rest of the day. Decisions! Decisions! Due to other health problems as well, I’m just really struggling to get through each day. Maybe I’ll go back down to 0.50mg for a number of days and if that goes well, I’ll try and go back up.

One thing I’ve found on LDN is that even though I’m really not coping well with struggling to breathe 24/7 I’ve hardly been crying. I think it’s because the LDN helps the body make more endorphins. It blocks the opioid receptors, thus your body thinks what on earth is happening and it ends up making more endorphins. I was crying at the drop of a hat before. I only hope the LDN will eventually help with my breathing problems and calm the cytokines and my immune system down. Who knows? One day at a time does it.

💛💛💛

March 3, 2023

Okay, gratitude list time:

1. Got my appointment with the endocrinologist over and done with, my parathyroid hormones are getting better since taking calcitriol. Woohoo! At least something health wise is going in my favour. Now, if only I could breathe properly.

2. Got to spend time with a lovely friend who took me there, she took me to my appointment last time too, six weeks ago. My next appointment now isn’t for three months. I have my own personal taxis🚖😂 My friends are so helpful.

3. Speaking of taxis, my husband’s carer who is out and about with him today, asked if I wanted a lift back from the hospital. I told him I was with a friend, but how kind is he.

4. Saw some pretty orange coloured hibiscus flowers on the hospital grounds. Both my friend and I had to stop and take photos. How could you not?

4. My groceries got delivered just a little while ago. Very handy.

5. Looking forward to having some dinner soon.

6. My brain fog is hindering me from thinking, so hmmmmmm! What else? Let’s see. My cat looks calm and contented chilling on the floor.

7. My fan is blowing a nice breeze.

8. The temperature and weather is perfect.

9. The sun is shining☀️☀️, though I love rain too🌧🌧

10. Think Carmie! Think! 🤔……………. I’m excited I got some more sparkling water. I’m grateful for the small things that make life comfortable and bring contentment.

💛💛💛

March 3, 2023

Documenting: I’m going to take 0.50mg of low dose naltrexone (LDN) tonight. I’ve been taking that dose for over two weeks with no problems at all, but last night I took 0.75mg. Today my withdrawals ramped up a bit so I’m going down to 0.50mg again until I feel a little better.

I’m not sure if it was the LDN or if I accidentally double dosed this week. I was so spaced out the other night that I couldn’t remember if I even took my meds, so I ended up taking another dose. Did I double dose or not? Who knows?

Either way, if I accidentally double dosed or not, or if it was the updosing of the LDN, I’ll just continue to stay on 0.50mg of LDN until my body feels ready to try the 0.75mg again. Hopefully I’ll be able to updose again. Time will tell⏰

March 4, 2023

Time for a quick gratitude list and then I’m getting rid of screens for the rest of this evening. Here goes:

1. I’ve been sticking to the no noise before 9am or after 5pm for nearly a month now. I think I like it and I might keep the habit for now. The only exceptions I allow are white noise or nature sounds. The aim is to help my nervous system.

2. I love the sound of a crackling fire and the look of a fire, so I occasionally put on a YouTube channel and have the fire on in the background. I can’t be around a literal fire though due to my lungs.

3. I’ve been on the autoimmune protocol for a long time, but I’ve just pretty much stayed in the elimination phase and only eat vegetables ( no nightshades ), fruit, grass fed meat and wild caught seafood. I’ve decided I’m going to do some introductions now and see how I go with different things. You only try one thing at a time and see if you react to it or not. Look forward to expanding what I can eat, though I do enjoy what I have been eating. Everything I add will still be healthy and anti inflammatory.

4. I introduced Brazil nuts yesterday and it went fine. No reaction. Yay! I haven’t had any nuts for years. Next on the list are blanched almonds. I won’t eat the skins because there are too many lectins in almond skins. I’m just happy I can eat Brazil nuts, they will be handy for a quick snack when I’m out and about.

5. I’ve just been drawing flowers. Good distraction.

6. I’ve been prettying up envelopes. Good distraction.

7. My cat is looking cute while she’s grooming herself.

8. Love art and craft supplies.

9. Again, love sparkling water. I just grabbed a bottle, but the lid wouldn’t come off. I ended up just putting a hole on the cap and I’m drinking through that. I still can’t get the lid off, I think they super glued it on.😁

10. My withdrawals are still bad today, but I’m so very grateful for distractions in general. I’m grateful I’m a person that doesn’t really get bored, I always find a million things to do. I’m grateful we were created with creative minds. I’ve got lots of friends, but I’m grateful that I’m quite contented just being on my own, I can happily entertain myself. Just as well, because when we are in waves I have to go into complete lockdown due to my lungs.

A friend rang me this week, she’s stuck at home with Covid, but she’s feeling better. She’s so bored, poor darling. We always have a laugh about how bored she gets when she’s not around people and how contented I am just chilling by myself.

I am an extrovert, an ENFP actually. ENFP’s need the most alone time out of the extrovert types though. We need time to be creative and regroup.

Anyway, that’s about it for today. I’ll just keep plodding along until this little wave subsides. I’ll stick to 0.50mg of low dose naltrexone until my body recovers. Once it recovers I’ll up to 0.75mg and see how it goes. One day at a time does it.

💛💛💛

March 4, 2023

8 minutes ago, Carmie said:

I’ve been sticking to the no noise before 9am or after 5pm for nearly a month now. I think I like it and I might keep the habit for now. The only exceptions I allow are white noise or nature sounds. The aim is to help my nervous system.

Love this idea!! Sounds super soothing...

9 minutes ago, Carmie said:

I’ve just been drawing flowers. Good distraction.

This sounds like so much fun! Would you be open to sharing your art? I've been wanting to try getting creative, but haven't made the time.

10 minutes ago, Carmie said:

Love art and craft supplies.

Me too!

11 minutes ago, Carmie said:

I’m grateful I’m a person that doesn’t really get bored, I always find a million things to do. I’m grateful we were created with creative minds. I’ve got lots of friends, but I’m grateful that I’m quite contented just being on my own, I can happily entertain myself.

Yes yes yes! As usual, your gratitude lists are making me grateful. Yay for our creative minds!

11 minutes ago, Carmie said:

I can happily entertain myself. Just as well, because when we are in waves I have to go into complete lockdown due to my lungs.

Ooh, right there with you! I gotta protect my immune system during waves, and while it can get lonesome it is nice to find ways to entertain myself. So glad you've been doing art and decorating envelopes! You're making me want to get creative and write to people.

Thank you for sharing your list and getting the waves of gratitude going around the site!

March 4, 2023

Hey there @littlebird

Yep, I’m definitely enjoying the no noise before 9am or after 5pm challenge. I’m going to keep doing it for now. I really must get some more crossword puzzles to do in the evening. I’ve only got those find a word in the grid type puzzles at the moment and I’m not really a big fan of those, but they are a distraction. I prefer crosswords as I have to guess the clues. I can really get into the zone with those and hours can just pass by. I had a bunch of crosswords books and I finished them all recently in a short period of time.

I’m not all that great with drawing, I’m just mucking around and having a bit of fun. I think I’m going to try and get into it a bit more, follow some tutorials maybe. I’ve done lots of paper crafts, like scrapbooking, in the past. I want to maybe start making cards again too. I’d love to learn how to paint with water colours too, I’ve only mucked around a bit with acrylics.

Hey, you know what I saw yesterday? A reverse colouring in book. It’s just lots of paint patterns and you have to draw and turn them into something. It looks really interesting.

Creating things makes me happy. Creativity isn’t just arts and crafts. It can come in all forms, everyone has different creative pursuits. It can be gardening, cooking, dancing, home decorating, journaling, science projects, flower arranging, fashion design etc etc etc. It’s never ending. We have such an array of pursuits to let our creativity out.

Youtube and Pinterest are great places to find ideas. Pinterest has some brilliant ideas for decorating envelopes.

Hope you find something creative that sparks joy in your soul💛

March 4, 2023

Documenting: Withdrawals aren’t as bad this morning, let’s see how the rest of the day goes. They really ramped up the last couple of days and I do think I double dosed 5 days ago. I don’t think it was upping the low dose naltrexone (LDN ) that caused these withdrawals. I’d say I’m about 70/80% percent sure😃, but who knows?

Anyway, I’m not going to do any updosing of the LDN for a number of days and let my brain continue to settle before I attempt to updose it from 0.50mg to 0.75mg again. Not sure how the updosing will go, but one day at a time does it.

It can be really frustrating when we do something accidentally, like not remembering whether we took a dose of our meds or not, and then doing it twice. Or forgetting altogether until the next day, though I’ve never done that. Lately, I’ve just been struggling so much with my health that I’m just existing and in survival mode and it’s so easy to make mistakes.

The silly thing is I know better, and I even set the timer for when to take my meds, but then sometimes I can’t be bothered to get up and take them straight away. I have to stop doing this and just do the 5,4,3,2,1 Mel Robbins thing, the 5 second rule. Come on Carmie, you’ve got this!

The thing is with the Seroquel I find it doesn’t matter what time in the evening I take it, it doesn’t give me negative effects if I take it at 7pm or midnight. I think that’s why sometimes I’m not bothered taking it right away when the timer goes off. I have to stop doing this though and just take it as soon as it goes off⏰. 5,4,3,2,1🚀🚀🚀

March 5, 2023

Just a quick gratitude list📝brain fog is bad:

1. Just did some more of the diamond painting I was given as a pressie. It doesn’t take much brain power to do, you just stick little beads on different numbers and letters. I used to do millions of them to help me get through withdrawals, but I’m a little over them now. I only do them when I get them as gifts. I’ve almost finished this one.

2. Just had a nice refreshing shower🚿

3. Reintroducing almonds into my diet didn’t work, got stomach pains later in the day from them. But I’m grateful Brazil nuts were fine. Will try and reintroduce another few low lectin nuts in the future. I hope I can tolerate macadamia nuts, they’re so yummy. If not, it’s onto the next thing.

4. I’m grateful I’m expanding my diet, but I need to go slow with reintroductions. I don’t want to stress my body out to much.

5. I’m grateful for my comfy bed.

6. I’m grateful for the breeze from my fan.

7. Prettying up writing paper today was a good distraction. I did envelopes yesterday.

8. Love coloured markers and drawing pretty patterns.

9. Struggling to think………………….…I have such little strength today, but managed to do a small amount of housework. Yay! My clothes in the washing basket are nearly reaching the ceiling though😯😁 I hope I’ll have the strength to do them tomorrow. My washing machine is in the garage downstairs as I live in a unit. Some days I don’t even have the strength to walk downstairs to check the mail.

10. I’m grateful my withdrawals haven’t been too bad all day. Hopefully in a few days time I’ll be able to try and updose my LDN.

The end!🥱😴

March 5, 2023

Withdrawals still okay, I think they’re settling and I’ll try updosing the LDN in a couple of days again.

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 shouldn’t have gotten the vaccine. The suffocating feeling is awful!!! Had enough!!! This flare is never going to end!!! Such a horrible feeling waking up every morning feeling claustrophobic 😢😢

Carmie: accidently doubling up on Seroquel one day while tapering

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