Carmie: accidently doubling up on Seroquel one day while tapering

October 17, 2021

14 hours ago, direstraits said:

Hi @Carmie

love reading your gratitude lists,so inspiring.

didn't get to the beach too much this past summer,but one time that we did, we saw dolphins swimming close to shore! 🐬that was cool.

last month we went to smithville,the place with all the shops i've mentioned before, well we were leaving a shop and I stepped off a small step and must have landed wrong and fell and badly sprained my ankles...i couldn't believe I did that! Anyway I'm doin a lot better now but still have some pain...don't think I'll be going back there anytime soon😀

otherwise,I'm doing pretty good...still have some symptoms but,mostly physical..my eyes drive me crazy sometimes,off balance,still some burning but better than I was,thank goodness.

I hope you're doing OK...you have so much to deal with but you've got a great attitude.

wishing you better days ahead.

Love,ds❤️🤗

Hi direstraits,

So lovely to hear from you. I’m so sorry that you sprained your ankle when you fell, I’m glad you’re a little better though. My husband keeps falling, he dislocated his shoulder and ended up with a skull fracture a month ago. He’s doing okay now though, and isn’t in any pain.

How cool you saw dolphins near the beach. The last time I saw dolphins was down at Byron Bay. I stayed there until the evening and I could see these light flashes from underneath the water too, I realised afterwards there were photographers doing underwater photography. Problem solved!

I’m glad to hear you’re doing fairly well. I’m really scared about my second vaccine shot tomorrow. The first one, a month ago, caused a major flare of my autoimmune disease which attacks my lungs. Struggling to breathe is the most awful thing. The second jab is supposed to be worse, all those extra antibodies will be having a field day attacking my lungs. It’s not the fact that it’s a Covid vaccine, any vaccine would do the same thing.

Last time the antibodies hit my lungs a week after the jab, I’m not sure how quickly the antibodies will go into attack mode this time, but I’m still suffering from the last one.

Okay, I’m trying to not think about how scared I am, so I’m going to write my gratitude list for the day, here we go again:

1: I had the strength to walk up to get some groceries, and I couldn’t help myself and bought another big packet of smoked salmon and ate it all.😋😋

2: The organic zucchini was on special, it was half price. Yay! The foods that have a lot of pesticides on them I try and buy organic. Foods that don’t have many pesticides on them, like cauliflower, cabbage, avocado etc I buy conventional. The pests mustn’t like the taste of those😂. Now, where is the zucchini emoji❓

3: Got some sweet potato too. Yummy!🍠🍠🍠 I haven’t had any for a while, so I’m looking forward to having some of those.

4: I love looking at the flowers when I go into supermarkets, they brighten my day. I must get a bunch next time I go there🌼🌸🌼🌸

5: I managed to write some more letters today📝📝📝💌

6: Got another script for Seroquel this week. I’ve got enough for a few years, but I’m always stocking up. I get quite a few doses out of each tablet💊because I crush it and mix it with water.

7: It was another glorious day☀️☀️

8: The jeans I bought yesterday are so comfy👖. Since starting the autoimmune protocol diet I’ve lost 9kgs and am slim again. I’d rather have a few extra pounds and no autoimmune disease though.

9: I think I’m going to chill and watch some Blue Heelers soon📺

10: I always enjoy the glow of my Himalayan salt lamps. They are so relaxing✨✨✨✨

Okay, time to chill now. Hope you enjoy the rest of your day🧡

October 18, 2021

Just popping in to do my gratitude list. Trying to look at the positives in each day, despite whatever is happening in my life.

1: Well, I got the second vax over and done with. 💉🦠Still petrified that the antibodies are going to go on a full scale attack of my lungs again, last time it happened a week after the vax. On the positive side though, the odds of getting the virus are lowered a little, I’m grateful for that.

2: Got myself a colouring in book called summer holidays. The pictures are fabulous🌊🏖⛵️I find colouring in a good distraction and relaxing. I still have a few other colouring books, but as soon as I see one with the beach on it, that’s it, I have to get it.

3: There’s a thunderstorm happening right now and it’s raining heavily. I loooooove rain🌩🌧🌧🌧🌧

4: Got some colourful paper to write letters on 📝📝💌💌

5: Had a little strength to do some cleaning🧹🪣🧽

6: A friend messaged me to see if I needed any shopping done, which was very sweet of her, but I’m all good for now. Got plenty of🥬🥦🥑🍎🥩🍠

7: Speaking of food, I think I might boil up some more sweet potato for dinner and fry some meat😋😋 I usually steam my vegetables, but I found out that veggies like sweet potato and pumpkin actually are more nutritious if you boil them. Go figure. I love pouring lots of extra virgin olive oil on my sweet potatoes. Yummy!!

8: I bought a magazine to read, I’m not into celebrity magazines, but I like ones with puzzles in them, real life stories, health, crafts etc. 📖

9: Chilling on the lounge this afternoon watching Netflix📺. Good ol’ Netflix. My breathing isn’t great so I’m trying to distract myself. I’m grateful for distractions.

10: I’m grateful that I have enough wool🧶🧶🧶 to do crocheting while watching Netflix. I just switched the tv off during the thunder, but that’s subsided now since I first started writing here. I must write slow😂😂😂 Good ol’ brain fog! Time to watch the end of my movie.

Well, that’s another gratitude list down. Hope everyone is finding something to be grateful for, despite all🧡

October 18, 2021

Thank you Carmie!

October 18, 2021

2 hours ago, Carmie said:

Just popping in to do my gratitude list. Trying to look at the positives in each day, despite whatever is happening in my life.

1: Well, I got the second vax over and done with. 💉🦠Still petrified that the antibodies are going to go on a full scale attack of my lungs again, last time it happened a week after the vax. On the positive side though, the odds of getting the virus are lowered a little, I’m grateful for that.

2: Got myself a colouring in book called summer holidays. The pictures are fabulous🌊🏖⛵️I find colouring in a good distraction and relaxing. I still have a few other colouring books, but as soon as I see one with the beach on it, that’s it, I have to get it.

3: There’s a thunderstorm happening right now and it’s raining heavily. I loooooove rain🌩🌧🌧🌧🌧

4: Got some colourful paper to write letters on 📝📝💌💌

5: Had a little strength to do some cleaning🧹🪣🧽

6: A friend messaged me to see if I needed any shopping done, which was very sweet of her, but I’m all good for now. Got plenty of🥬🥦🥑🍎🥩🍠

7: Speaking of food, I think I might boil up some more sweet potato for dinner and fry some meat😋😋 I usually steam my vegetables, but I found out that veggies like sweet potato and pumpkin actually are more nutritious if you boil them. Go figure. I love pouring lots of extra virgin olive oil on my sweet potatoes. Yummy!!

8: I bought a magazine to read, I’m not into celebrity magazines, but I like ones with puzzles in them, real life stories, health, crafts etc. 📖

9: Chilling on the lounge this afternoon watching Netflix📺. Good ol’ Netflix. My breathing isn’t great so I’m trying to distract myself. I’m grateful for distractions.

10: I’m grateful that I have enough wool🧶🧶🧶 to do crocheting while watching Netflix. I just switched the tv off during the thunder, but that’s subsided now since I first started writing here. I must write slow😂😂😂 Good ol’ brain fog! Time to watch the end of my movie.

Well, that’s another gratitude list down. Hope everyone is finding something to be grateful for, despite all🧡

Carmie I love your gratitude list. Despite everything your going through you have an amazing ability to think so positive. God bless you

October 19, 2021

Thanks for dropping by @Kostas @Cheeky

How have you been Kostas? Hope you’ve been doing well.

Thanks for your kind words Cheeky, I’m not doing so great at this moment, I’m lying on the couch struggling to breathe, but funnily enough I’m still in good spirits. I did get to the water today so that brightened my day.

Anyway, here goes my gratitude list for today:

1: I got to go to the beach again🎉🎉🎉🎉🎉My favourite place🌊🌊🌊

2: My husband’s wonderful support worker took us. She’s so lovely, this was the second time we’ve had her with us. She’s very kind and caring 🤗 His other external support worker will see him this Thursday and Sunday.

3: We sat on the jetty for quite a while and watched the kids jumping into the water💦💦💦 It was entertaining.

4: Got my husband a hair cut finally✂️He got a number two buzz cut. He was starting to look like the mad professor as he’s balding, but has lots of hair on the sides😁 He looks so much better now.

5: I got some more supplements today when I was out, and my tocotrienols also arrived. I have to try and do everything to prevent and lessen scar tissue in my lungs 🫁while their being attacked by antibodies all the time. Don’t know how long this major flare up from the vaccine will last. It’s really going in overdrive today after the second dose 💉💉yesterday. I’m looking on the positive side still though, it’s lessening my chances of getting Covid🦠.

6: I’m grateful for distractions. My motto has always been Distract! Distract! Distract! I do it for withdrawals and I also do it when I feel like I’m suffocating. There are always lots of things to use as distractions📚📝🎞🎼🧶🖍📸📀

7: Speaking of distractions, I started on my new colouring book last night before bed🖍🖍 While out today I got another diamond painting, this time it’s a picture of three emus. I don’t keep them once I’ve done them, I just use them to fill in time to distract myself. I used to put them on the wall, but I’ve thrown all those out now. I’ve done sooooo many!

8: Don’t know how well I’ll sleep tonight as my breathlessness is severe🛌, but if I can’t sleep I’ll just have to continue to distract myself. I don’t have a lot of strength or concentration because of CFS, and not sleeping makes it worse, but if I can’t focus on anything while unable to sleep I’ll just put on some music or listen to something.📻 Let’s see how I go tonight, you never know, maybe I’ll get some sleep.

It’s great being able just to listen to something to try and get the focus of oneself. Distractions! Distractions! Distractions! I’m grateful for distractions!!!

9: I’m lying on a comfy lounge at the moment🛋 with my cat🐈 next to me.

10: When I have some strength I’ll have another shower🚿 It feels nice after freshening up.

Well, that does it for another day. I’m really struggling, but continuing to find things to be grateful for does help. When breathing gets bad it can make you really panicky as you feel like you’re suffocating. I’m getting enough oxygen in my blood, it’s just that I feel like I’m breathing through a tiny straw.

One hour at a time does it, hope you’re having a happy day☀️☀️☀️☀️

October 19, 2021

I am OK Carmie,

Thank you.

Always nice to hear from you ..

Be well.

October 19, 2021

Wanted to say thank you for encouraging the use of gratitude lists. Been through a fairly tumultuous few weeks lately and stopping a couple of times for gratitude lists and reality checks has been a real support.

Hope you're doing well Carmie I will check back in here a bit later

October 19, 2021

1 hour ago, Carmie said:

Thanks for dropping by @Kostas @Cheeky

How have you been Kostas? Hope you’ve been doing well.

Thanks for your kind words Cheeky, I’m not doing so great at this moment, I’m lying on the couch struggling to breathe, but funnily enough I’m still in good spirits. I did get to the water today so that brightened my day.

Anyway, here goes my gratitude list for today:

1: I got to go to the beach again🎉🎉🎉🎉🎉My favourite place🌊🌊🌊

2: My husband’s wonderful support worker took us. She’s so lovely, this was the second time we’ve had her with us. She’s very kind and caring 🤗 His other external support worker will see him this Thursday and Sunday.

3: We sat on the jetty for quite a while and watched the kids jumping into the water💦💦💦 It was entertaining.

4: Got my husband a hair cut finally✂️He got a number two buzz cut. He was starting to look like the mad professor as he’s balding, but has lots of hair on the sides😁 He looks so much better now.

5: I got some more supplements today when I was out, and my tocotrienols also arrived. I have to try and do everything to prevent and lessen scar tissue in my lungs 🫁while their being attacked by antibodies all the time. Don’t know how long this major flare up from the vaccine will last. It’s really going in overdrive today after the second dose 💉💉yesterday. I’m looking on the positive side still though, it’s lessening my chances of getting Covid🦠.

6: I’m grateful for distractions. My motto has always been Distract! Distract! Distract! I do it for withdrawals and I also do it when I feel like I’m suffocating. There are always lots of things to use as distractions📚📝🎞🎼🧶🖍📸📀

7: Speaking of distractions, I started on my new colouring book last night before bed🖍🖍 While out today I got another diamond painting, this time it’s a picture of three emus. I don’t keep them once I’ve done them, I just use them to fill in time to distract myself. I used to put them on the wall, but I’ve thrown all those out now. I’ve done sooooo many!

8: Don’t know how well I’ll sleep tonight as my breathlessness is severe🛌, but if I can’t sleep I’ll just have to continue to distract myself. I don’t have a lot of strength or concentration because of CFS, and not sleeping makes it worse, but if I can’t focus on anything while unable to sleep I’ll just put on some music or listen to something.📻 Let’s see how I go tonight, you never know, maybe I’ll get some sleep.

It’s great being able just to listen to something to try and get the focus of oneself. Distractions! Distractions! Distractions! I’m grateful for distractions!!!

9: I’m lying on a comfy lounge at the moment🛋 with my cat🐈 next to me.

10: When I have some strength I’ll have another shower🚿 It feels nice after freshening up.

Well, that does it for another day. I’m really struggling, but continuing to find things to be grateful for does help. When breathing gets bad it can make you really panicky as you feel like you’re suffocating. I’m getting enough oxygen in my blood, it’s just that I feel like I’m breathing through a tiny straw.

One hour at a time does it, hope you’re having a happy day☀️☀️☀️☀️

You will get through this, you always do. Distraction is what I do too. I really hope you get some relief, it would be so difficult feeling like you can’t breathe. Stay strong we’re all here with you ❤️

October 19, 2021

4 hours ago, Carmie said:

Thanks for dropping by @Kostas @Cheeky

How have you been Kostas? Hope you’ve been doing well.

Thanks for your kind words Cheeky, I’m not doing so great at this moment, I’m lying on the couch struggling to breathe, but funnily enough I’m still in good spirits. I did get to the water today so that brightened my day.

Anyway, here goes my gratitude list for today:

1: I got to go to the beach again🎉🎉🎉🎉🎉My favourite place🌊🌊🌊

2: My husband’s wonderful support worker took us. She’s so lovely, this was the second time we’ve had her with us. She’s very kind and caring 🤗 His other external support worker will see him this Thursday and Sunday.

3: We sat on the jetty for quite a while and watched the kids jumping into the water💦💦💦 It was entertaining.

4: Got my husband a hair cut finally✂️He got a number two buzz cut. He was starting to look like the mad professor as he’s balding, but has lots of hair on the sides😁 He looks so much better now.

5: I got some more supplements today when I was out, and my tocotrienols also arrived. I have to try and do everything to prevent and lessen scar tissue in my lungs 🫁while their being attacked by antibodies all the time. Don’t know how long this major flare up from the vaccine will last. It’s really going in overdrive today after the second dose 💉💉yesterday. I’m looking on the positive side still though, it’s lessening my chances of getting Covid🦠.

6: I’m grateful for distractions. My motto has always been Distract! Distract! Distract! I do it for withdrawals and I also do it when I feel like I’m suffocating. There are always lots of things to use as distractions📚📝🎞🎼🧶🖍📸📀

7: Speaking of distractions, I started on my new colouring book last night before bed🖍🖍 While out today I got another diamond painting, this time it’s a picture of three emus. I don’t keep them once I’ve done them, I just use them to fill in time to distract myself. I used to put them on the wall, but I’ve thrown all those out now. I’ve done sooooo many!

8: Don’t know how well I’ll sleep tonight as my breathlessness is severe🛌, but if I can’t sleep I’ll just have to continue to distract myself. I don’t have a lot of strength or concentration because of CFS, and not sleeping makes it worse, but if I can’t focus on anything while unable to sleep I’ll just put on some music or listen to something.📻 Let’s see how I go tonight, you never know, maybe I’ll get some sleep.

It’s great being able just to listen to something to try and get the focus of oneself. Distractions! Distractions! Distractions! I’m grateful for distractions!!!

9: I’m lying on a comfy lounge at the moment🛋 with my cat🐈 next to me.

10: When I have some strength I’ll have another shower🚿 It feels nice after freshening up.

Well, that does it for another day. I’m really struggling, but continuing to find things to be grateful for does help. When breathing gets bad it can make you really panicky as you feel like you’re suffocating. I’m getting enough oxygen in my blood, it’s just that I feel like I’m breathing through a tiny straw.

One hour at a time does it, hope you’re having a happy day☀️☀️☀️☀️

I’d just like to say you’re an inspiration to all.
to find so much good in your life while suffering so much shows strength of character, determination and a will of iron.
I have a lot of respect for you.

October 22, 2021

Thanks for your all your lovely messages @Kostas @hayduke @Cheeky @Longroadhome I hope that you’re all having a good day.

I’ll get over to your threads again when I pick up a little. Brain fog has been severe and I haven’t been able to write a gratitude list on here for a couple of days. Breathing is bad at the moment too, and I’m just chilling on the lounge.

I have a little brain power, so I’ll write my gratitude list for today:

1: Took my husband to Southbank with the help of his care worker Andrew. Andrew is such a positive person, he’s always smiling and laughing. He really is a great care worker👨‍🦽

2: Southbank is a nice chill place. It’s next to the river in the middle of the city. It has a manmade beach, with sand and all🏖.

Got Andrew to take my husband on the Ferris wheel🎡 and then they ate 🍕🍕and🍦🍦. I can’t eat out myself, but I was so happy my husband enjoyed the pizza as he can’t taste savoury food very well. I think it was from when he fell in hospital and knocked his head and ended up with a brain aneurysm. It must have done something to his taste buds.

He really enjoyed the pepperoni pizza as it’s spicy. I must buy him more spicy food when we go out as he tends to be able to taste that. He enjoyed the kebab when we went to the beach this week too, it had sweet chilli sauce on it🌶. Time to carry a bottle of sweet chilli sauce everywhere I go😁

3: At the moment I’m sewing in 🧵🪡 all the loose ends of the millions of blankets I’ve been crocheting. I like the crocheting part, as it’s a distraction that helps me through withdrawals and my breathing problems, but I’m not too fussed about sewing in all the loose ends. I should do it as I go along😁

I’m trying to do the sewing before Sunday because I want to go to the RSPCA to give the blankets to the doggies there🐶🐶🐶🐶🐶🐶. I’ll probably want to take all the dogs home🥰

4: I actually managed to read a chapter or two of my novel📖 on the bus 🚌 today. I started it so long ago, one of these days I’ll actually have the brain power to finish it. I’m about half way through.

5: The weather has been glorious. The temperature is perfect and we’ve had both sun☀️and rain🌧

6: Good ol’ YouTube 📺has been distracting me since I got home. I’m crocheting 🧶 a bit, as well as sewing in some of the loose ends too. I’m just trying to distract myself because the breathing is so bad.

7: My cat is on the lounge next to me again😺

8: I started my diamond painting of the emus on Wednesday. Doing that will be another great distraction. Love my distractions🧡. It’s not easy going through everything I’m struggling with, but I can’t change it, so I just need to do the things that are within my power to do.

9: Awwwwww!!! Just looking at my puddy tat’s face. Soooo cute😍

10: Slept really well last night😴😴😴

Yay! I did it. Another gratitude list down. Let’s see if my brain lets me write one tomorrow.

Sending hugs to you all🤗

October 22, 2021

It was a long time ago but I remember being surprised by how good the exhibition at the South Bank Art Gallery was.

*hugs* Carmie

Cheers,

Hayduke

October 26, 2021

On 10/22/2021 at 4:58 PM, hayduke said:

It was a long time ago but I remember being surprised by how good the exhibition at the South Bank Art Gallery was.

*hugs* Carmie

Cheers,

Hayduke

I’m glad you enjoyed the art exhibition Hayduke, and I hope you’re having a fab day. Hugs right back at you🤗

I’ve been wanting to write gratitude lists for days, but my brain fog from the CFS has just been so severe, I couldn’t think to save my life.

Anyway, here’s what I’m grateful for today. It will be short and sweet as my brain is still barely functional.

1: Got to go to the beach today🌊🌊😁

2: Got to go to the beach on Sunday too🌊🌊 Another smile😁

3: Bought some more diamond paintings today of butterflies🦋, birds🦅 and turtles🐢. I find doing them helps me when I’m in survival mode with my health, as well as withdrawals. It’s a wonderful distraction.

4: Been doing lots of colouring in lately to help me to continue to cope with my struggling to breathe. Another distraction!🖍🖍🖍

5: The sea breeze today was glorious🌊🌊💨💨💨

6: On Sunday there were markets near the beach I went to. I’d never been to them before, but they were really good. I was too sick to walk around much, but I’ll definitely go back. It was soooo hot that day too🥵. I’m looking forward to going back when I’m a bit better.

7: I did buy a nice summer dress at the markets👗

8: After the markets, we went to a shopping centre to get out of the heat. Isn’t airconditioning just fabulous when it’s hot?❄️❄️❄️❄️

9: I get to see my natural therapist tomorrow, he’s always been so helpful. I hope I have the energy to get there. It takes me two hours each way, I have to catch a bus and train🚌🚂. I actually love train rides, they’re so relaxing. Choo! Choo!

10: I bought some yummy mangos and pawpaw the other day. Soooo good! 😋😋 ( When I just went to write “soooo good” autocorrect changed it to “soooo old” 🤣🤣)

I did it, time to crash now. Take care💛

October 27, 2021

Busy day today and it’s time for me to crash, actually I’m already lying on my bed. I just thought I’d do my gratitude list:

1: I managed to have enough strength to get to my natural therapist at the other end of town today. It took two hours there and two hours back🚶🏻‍♀️🚍🚇🚶🏻‍♀️🚇🚌🚶🏻‍♀️

There’s a bit of a walk once I get off the train, but I had enough strength to do it🎉🎉 I could get another bus🚌 once I get off the train, but that bus doesn’t run all that frequently. If I do have to get it one day I will do so, or grab a taxi from there🚕.

So far I’ve always managed to do the bit of walking, but at the moment I can barely move. Despite all this, I’m very grateful that I’ve found such an excellent natural therapist.

2: There’s a flower farm on the little walk and I bought myself a lovely bunch of flowers on the walk back to the train💐🌼🌸 I love flowers, they always brighten my day☀️

3: The first thing I did when I woke up this morning to distract myself was some of my diamond painting of two turtles🐢🐢

4: It’s another glorious day today☀️☀️. Looks like we will be getting rain for a number of days too, I love rain as well🌧🌧

5: I’m grateful that I already have some cooked food in the fridge, so I can just heat it up today, as I can barely stand up at the moment🍽🥄

6: Just had some kombucha that I make. I love homemade kombucha🥤I will have to stop drinking it for a while as I have to kill candida. Kombucha has yeast in it.

I don’t have any outwardly signs of candida, but a test 🧪🧫showed that I have too much in my body. It must have gone into overdrive in my gut. Everyone has candida in their body, but it’s not good to have an overgrowth, it causes a lot of problems.

I’ve been working on getting the viral load of viruses in my bloodstream down🦠🦠Because viruses aren’t living things you can’t kill them, once the infection is gone they still stay in your body in the background forever. You can try and make them as dormant as possible though.

As well as getting treatment for them, I’m also on a low arginine, high lysine diet 🥑🥬🥩to lower this viral load in my blood. I take lysine tablets too. Occasionally I have something a bit higher in arginine like berries🫐🫐but then I’ll take more lysine.

I need to do things to get the inflammation down in my body because the more inflammation the more my autoimmune disease attacks my lungs and the worse my breathing gets. I’m still in a flare from the vaccine💉💉

I’m grateful that we can always do things to help ourselves health wise. There are things I have no control over, but I try and focus on the things I can do, get the right natural treatments, stick to my anti inflammatory autoimmune diet, go out in nature🌊🌊🌸🌳, do some grounding, work on my emotional health etc.

Life is hard, but doing things I’m able to do helps get me out of the helpless victim mentality. I have meltdown days where I’m well and truly sick of everything, but then I pick myself back up again.

7: I’m just looking at my flowers, they’ve really brightened my day, they’re sooo beautiful🌸😍

8: I’ve got an air filter in my bedroom, and I love the humming noise it makes. The white noise is actually really calming when I go to bed at night🛌

9: I’m looking forward to going to the beach again next Tuesday if I’m well enough🌊🌊🌊 We might go to Bribie Island or Noosa. Still deciding.

10: I’m so grateful that my husband has care workers that drive us wherever we want to go. We have chauffeurs 😁😁. Both the external care workers he has love adventures, so that works out well. I love my adventures!

Anyway, that’s my gratitude list for today. I hope it all makes sense. I have to take the bin out today as the garbage truck comes early in the morning. I don’t have the strength to do it at the moment as I’m glued to this bed, but once I’ve done it I’ll be grateful that I managed to do it.

Take care one and all🧡

October 28, 2021

Well I think I might write my gratitude list now. It’s nearly noon and I’m still in bed as I don’t have much strength. I forgot about taking out the bin last night as I was so weak. Maybe one of the other residents may have taken it out.

Okay, here goes again:

1: I’m drinking the yummy kombucha that I made🥤. I’m just finishing off the bit I’ve still got in the fridge and then I’ll start the anti-candida diet in a couple of days. 🍽

I’m grateful that the diet is temporary😁. I’m on the anti inflammatory autoimmune diet and low arginine/ high lysine diet for life though🍠🥩🥬🥭🥑🍎🍏🍗. I love the foods I’m allowed to eat😋

The main change I have to make for the anti-candida diet is cut right down on fruit 🍉🍐, maybe cut it out altogether. On AIP, you are allowed 20g of fructose. I’ve gone on an occasional splurge with more than that, so naughty!😜

The other things I need to do is cut down the sweet potato to maybe one cup a day🍠when I have it and stop eating or drinking anything that’s fermented. I don’t eat grains, potatoes, processed junk food etc etc anyway, so there’s not a ton I have to change.

I’ll pretty much be following what Amy Myers says to do. I’m also getting treatment from my natural therapist.

2: It’s lovely waking up in the morning to a nice bunch of flowers🌼🌸🌼🌸 Note to self: I must buy myself flowers more often.

3: My bed is comfy🛏

4: I’m very happy we are having the kerbside pickup🚚🚛 next week. I’ve got a lot of junk I need to get rid of, like old fans, a microwave, furniture etc 🪑🪑. They are all in the garage. We haven’t had a council kerbside pickup since Covid began, so I’m so happy I’ll finally clean out the garage. I’m such a huge fan of decluttering, it makes me so happy!😁

5: I watched some YouTube📹 videos when I first woke up, a good distraction. I love YouTube, there are subjects on everything possible. I always need to find some kind of distraction to get my day started. Yesterday morning first thing it was a diamond painting🖼

6: I’ve still got some food that I cooked in the freezer, but if I manage to do so at some stage today, I might fry up some zucchini to add to what I’ve already made. I love veggies😍. I’ll have some 🐟 with them.

7: I ordered some more thymus glandular from Iherb, it helps with the T-regulatory cells, which is extremely important if one has autoimmune disease.

Intermittent fasting also helps with T- regulatory cells. I’ve done heaps of intermittent fasting, I don’t eat breakfast anyway. I must get back into stopping eating at a certain time in the evening again too. I’ve just been really overwhelmed with struggling to breathe from the flare caused by the vaccine💉💉 that I couldn’t focus on adding anything else into the mix.

But the next two health projects are the anti-candida diet and intermittent fasting. I’ll start with the first one and then do the IF afterwards or whenever I have the brain space to focus on something else.

I’ve read 📚📚quite a bit on forming habits in the past, and the most important thing I’ve found is that you start small and you don’t try and do too many things at once. If you do too many things at once, you get totally overwhelmed and then you do absolutely nothing.

8: I’m grateful I’ve got two more appointments with my natural therapist in the next month and a half. Each are three weeks apart. I’ll definitely get myself another bunch of flowers from the flower farm on the way back from those appointments🌸🌼🌸🌼🌸. I’ve walked past there heaps of times when I went to my appointments but never checked it out. I’m so glad I did yesterday. The flowers are so beautiful and fresh.

9: I’m grateful that I’ve got all the supplements I need at the moment. I was always running out of the supplements I needed, but hopefully I can keep on top of them. I need to be more organised.

It’s hard when you’re really sick, as there’s always so much to do and think about, but you don’t have the brain power🧠 or strength💪 to keep on top of everything. My CFS brain fog gets so severe.

Nevertheless, I’m very grateful for the things I’m still able to do.

10: I’m looking forward to my shower when I have the strength to do so🚿🚿🚿

That’s about it for another day. Okay, so what can I distract myself with now? I have so many choices😄🧡

October 28, 2021

Ah hey @Carmie, I meant to write in your thread last night but fell asleep before I made it. Sorry

Sorry you're having to struggle so much at the moment. Again much respect for how you find the good in things, but also hope you have safe moments to swear like a trooper at the things that suck! I was yelling at the tv late at night for a couple of weeks there towards the end of hard quarantine...rum may have been involved

October 28, 2021

Hi, Carmie,

I’m thinking of you, and I’m hoping that the reaction from the shot wears off soon.
You are on such a low dose that you probably don’t need to worry how long it takes to get to zero. All that matters is that you don’t suffer through the process.

I hope your kitty witty is doing well!

Rosetta

October 28, 2021

@CarmieI'm amazed by your resilience. You are one tough cookie (and a very thoughtful one, too)! I hope your breathing distress eases very, very soon. ❤️

October 28, 2021

@Carmie

Agree with the above posts wholeheartedly. I love your lists and outlook!! It helps me quite a bit.

Perspective is so important! Praying that things clear for you soon!

md

💜

October 28, 2021

@Carmie

my friend made a diamond painting for my birthday of my staffIe dog Georgie . I love it and it has pride of place in my living room.
They are a lovely keepsake.
Love your thoughts on things to be grateful for as they always make me look at what I’ve done that day to be grateful for.
Today it was spending time with my daughter and granddaughter. Lovely.

take good care

October 30, 2021

Hey there everyone, thanks for dropping around to my neck of the woods🌳🌳🌳, I’m lying on my bed and it’s pelting down outside now. Sounds like hail! If it’s not, it’s just extremely heavy rain.

@hayduke You are hilarious, I don’t actually swear, is it okay if I just stomp my feet a little🤣🤣

@Rosetta The flare up from the vax will eventually settle. If I didn’t have an autoimmune disease that attacks my lungs I wouldn’t even have noticed I had a vax, I didn’t even get a sore arm. It’s just when there are too many antibodies in my body, they also attack my lungs as they think they are foreign.

Yes, I’m taking it slow and steady with my tapering. I still get waves, but as long as I don’t get the really severe Akathisia I’m happy. It’s amazing that no matter whether you’re on a large or small dose you can still get the same withdrawal symptoms.

@92sharks Thank you so much for your kind words. I think we all have resilience in us, it’s just a matter of every time we have a meltdown we pick ourselves up again. I’ve shed many tears, but then I try and focus on the things that are still in my control. One day at a time does it, and if need be an hour at a time or a minute at a time.

@mdwstrx Thanks so much for your very kind words too. I’m glad my gratitude lists are helpful. I find there are always things we can be grateful for, sometimes they are just small things, but writing them down really helps you to see that we still have much to be grateful for.

@Longroadhome I’m so glad you had a nice time with your daughter and granddaughter. I’m so happy to hear that you’re looking at things to be grateful for each day too.

Speaking of gratitude lists, it’s time to do one😁:

1: I managed to have enough strength to walk🚶🏻‍♀️to the shops this morning and get some groceries 🎉

2: When I got home I went on an eating splurge: watermelon🍉, healthy plantain chips (which are just plantains and healthy oil), and smoked salmon🐟. All three things that I really love. I’ll be going on an anti-candida diet in a couple of days, so I thought I’m going to have my plantain and watermelon melon treats before I do so😋😋

Plantains🍌 are high in arginine, so I took extra lysine tablets. It’s nice to have something that’s really crunchy here and there and still healthy. They are made with sustainably sourced palm oil, it’s really good for you. They make savoury ones too, they are just plantains that aren’t as ripe, and they add salt to them🧂🧂

3: I got some organic grass fed meat🥩and salmon steaks🐟 for my protein this week, as well as tinned mackerel and some anchovies. I’m all set for protein, I can’t eat nuts, seeds or legumes on AIP as they will cause inflammation due to the high amount of lectins in them.

4: I’ve been in bed all afternoon🛌, but I’m comfy and I love my fan. I’m enjoying a lovely breeze.💨💨💨

I’ve got an airconditioner ❄️❄️in the window of my bedroom, but I can’t use it as it’s old and will affect my lungs. My husband put it in, but he’s in a care home now. I need some help to get it out and remove all the paneling around it. I’d love to put a new one in. Friends would help me, I just haven’t got around to asking them. I love my aircon, I better do that before summer🥵🥵. We are already getting some extremely warm days in spring. Yay for aircon🎉

5: Water, I looooove drinking water, it’s so refreshing💦💦💦I want to get one of those soda streams one day where you can make your water bubbly. I buy sparkling water sometimes, because I like the bubbles.

6: The one thing I’ve been so excited about this week is that I got most of the stuff🪑🪑 I needed to get rid of out of the garage and onto the kerb, for the kerbside pickup next week. I really do love decluttering😁.

I’ve still got a few things to take out as I didn’t have much strength today, I did it yesterday. I’ll do the rest tomorrow. Good bye clutter👋👋👋

7: I managed to get a couple of important online tasks done📱( I can’t see an iPad emoji, I don’t have a computer)

8: Again, I have to say having fresh flowers in my home really, really, really brightens my day🌼🌸🌼🌸🌼

9: I do like to journal in a notebook📒, but I can’t always do it due to severe CFS brain fog. Journaling has helped me sooooo much. I’ve managed to solve all kinds of things by getting my thoughts down on paper. It also helps you to stop ruminating and get all those thoughts out of your head and down on paper instead.

10: Watched some of Blue Heelers today👮‍♀️📺

Well, the downpour has stopped. This happened once before, I was writing on my thread, and by the time I finished it had stopped😁. The brain fog makes writing hard, and I guess finding the emojis makes the process slower😜. I love emojis, can you tell?? I’m a big kid at heart.

Take care everyone🧡🧡

October 31, 2021

Carmie, your food sounds delicious! I hope the flare of your lung condition improves soon, very hard to deal with difficulty with breathing as it's hard to ignore and can cause so much anxiety.

I've got a whole shed of stuff, come on over here when you run out of decluttering to enjoy! 😅

November 1, 2021

On 10/31/2021 at 4:27 PM, ShiningLight said:

Carmie, your food sounds delicious! I hope the flare of your lung condition improves soon, very hard to deal with difficulty with breathing as it's hard to ignore and can cause so much anxiety.

I've got a whole shed of stuff, come on over here when you run out of decluttering to enjoy! 😅

Hi ShiningLight,

Thanks for your kind words, I’m hoping this flare doesn’t last too long either, struggling to breathe is awful. The last flare lasted about nine months, it happened after I went to dentist, something triggered my autoimmune flare there. My breathing is never great, but flares take it to another level altogether.

I don’t enjoy decluttering other people’s places, just my own sorry🤣🤣🤣

I’m too braindead to write a gratitude list, but thought I’d pop in to record I’m dropping by another 0.05mg tonight, which will get me down to 4.10mg.

Good night from Aussie Land🧡

November 2, 2021

Time to write my gratitude list☀️ for today, they help me focus on the positives despite all. Here goes:

1: Went to my happy place again today, the beach🌊🌊There was a lovely breeze💨💨💨

2: Just put on my blue light blocking glasses😎for the evening, I’m grateful that they help my sleep😴😴 They are just clip on ones that I put over my other glasses.

There are nights🌔 where I don’t sleep too well though, but they help most of the time. Don’t know how I’ll go once I get really low on the Seroquel or I’m off it as I could get rebound insomnia. It’s still going to take me forever to get off it though.

I was in such a deep sleep this morning and my cat😸 woke me up. She always wakes me up every morning, if I’m not already awake early. Nevertheless, I’m grateful to have her, I love giving her cuddles🤗😽

3: I’m grateful that I was able to do a small drop⬇️ last night, from 4.15mg to 4.10mg. It was only 0.05mg. I’m dropping by around 5% over three months, can’t seem to go much quicker. Don’t know if that will change in the future.

Over the three months I’m doing four drops of over 1% and having three week holds in between the drops. So altogether that will take me from the 4.20 mg to 4mg. I’m holding the 4.10mg for three weeks now and then I’ll drop to 4.05mg and hold that for three weeks.

Slow and steady does it, I’m always really happy when I make another drop, no matter how small. It’s all movement in the right direction➡️➡️➡️

4: I journaled 📚 when I was at the beach. Journaling is fantastic, getting all those thoughts that are running around my head down on paper. I’d be doing journaling all the time if my CFS brain fog wasn’t so bad. I’m happy I can do it though when my brain lets me.

5: I bought myself some Granny Smith apples 🍏🍏🍏today as I’m finally starting my anti-candida diet tomorrow. I’m allowing myself small amounts of fruit, but only Granny Smith apples and berries🫐🫐 as they are lower in sugar. I’ll have to take extra lysine as berries are high in arginine.

6: I’ve been doing quite a bit of colouring in. It’s a fabulous distraction🖍🖍🖍

7: Oh, yes, the other week I finally finished sewing🧵🪡 in all the loose ends of all the blankets I made. Love crocheting, but not a fan of sewing in the loose ends. I didn’t end up going to the RSPCA to give them to the doggies, but my husband’s support worker was going to drop them off🐶🐶🐶. We ended up going to the beach instead🌊🌊

One day I want to take my husband to the RSPCA still though, they have a cat cafe where the cats walk around🐈🐈. I’m grateful for animals!

8: I’m grateful for gratitude lists. 📝 I’m struggling to breathe and focusing on the positive helps.

9: I’m most grateful to my Creator and all the beautiful things he has made🌼🌸🌳🌴⭐️☀️🌦❄️💦🐝🦙🦜🦋🪲

10: I’m grateful for my bed🛏 I’m lying on it at the moment and so is my cat. She’s asleep, should I wake her like she woke me this morning❓❓❓🤣🤣

Well that’s it for another day. Take care everyone🧡

November 2, 2021

Was struggling to fall asleep last night, but then I realised after 11pm that I hadn’t taken my meds as yet. Got to sleep after midnight. Not looking forward to rebound insomnia once I’m off them if that happens, can’t predict what’s going to happen that far ahead though.

A lot of people have trouble if they change the times they take their meds, I don’t seem to have any problems in that regard at all with the Seroquel. I can take them at 6pm or midnight, it doesn’t seem to make any difference. I don’t get any adverse effects from it. As long as I take it some time at night it’s fine.

Before the pandemic I went to lots of concerts and I wouldn’t get home until late so I took the Seroquel then, no problem with that at all. Speaking of concerts, I did book the Keith Urban concert for this December, but they rescheduled it for December next year. I saw him a few years ago, great night!

Anyway, today I have to go to Centrelink, but I don’t have much strength, I’m catching the bus there. I’ll get up when I’m able, it doesn’t matter what time I go in. They want some of my husband’s paperwork. We are both on disability pensions.

Okay, time to rest some more so I can find the strength to get there.

Have a good day everyone 🧡

November 4, 2021

I hope your day out went well. -Rosetta

November 6, 2021

On 11/5/2021 at 3:23 AM, Rosetta said:

I hope your day out went well. -Rosetta

Yes, all went well Rosetta, thank you 🧡 There’s so much paperwork when it comes to dealing with government agencies all the time.

One day I got a letter from Centrelink ( social security here in Australia) saying that seeing that I’m in Spain I need to contact the Spanish embassy etc. Huh??? I haven’t lived in Spain since I was 15🤔😆 I’ve been living in Australia since then and I’m heading towards 60 in a few years.

Another time I got a letter that said my husband has to go to some employment thing otherwise they would cut off his benefits. He was in hospital and they knew that, he was there for three months and then went into a care home. They knew how sick he was. So that’s another WHAT???? I think I went into Centrelink approximately twenty times within a years time, just to keep sorting things out when my husband got sick.

Anyway, I thought I’d do a gratitude list for today:

1: I stayed at my husband’s care place for two nights and I just got home today and the kerbside cleanup trucks🚚🚛 had taken all the old furniture etc away. Yay! Glad to have gotten rid of all my old stuff. Bye! Bye!👋👋 The footpath is nice and clean again too.

2: Bought some berries today🫐. Yummy! I’m grateful for all the yummy food that’s around. I started the anti-candida diet this week, but I’m starting off slowly as I don’t want to knock myself out and end up in bed 🛏for weeks from the die off.

The only fruits I’m allowing myself are berries and Granny Smith apples. I haven’t put an actual limit on them as yet, but from Monday I can have one apple or one cup of berries. I’ve cut out sweet potato🍠 because it’s too high in carbs, but I’ll allow myself a little bit of pumpkin.

Down the road I might even cut out fruit temporarily, I’m still deciding. I’m worried about losing too much weight, I’ve already lost eight kilos being on my autoimmune diet. I’m happy with my weight now, but I don’t want to be too skinny. I’m about 57kg. I was 55kg as a teenager. When you’re older though, you don’t want to be too thin.

3: I managed to write some letters📝📝📝

4: Took my husband to visit his sister on Wednesday, with the help of a support worker. She’s got the most active little doggie🐶😍

5: Got myself a nightrobe, a nice terry towelling one. I look like I’m going to a spa😁

6: So glad I managed to sort out stuff with Centrelink.Yay! 👍

7: Got some other paperwork sorted too🔖📝🖊. I’m always so relieved when these things are done. There’s always so much paperwork to do with everything, and I’m not much of a fan of administrative stuff.

In the Myers Briggs personality test I’m an ENFP, I’m a think outside the box person (Box, what box, is there a box???🤪) and I’m a free spirited person. I don’t like being tied down or micro managed. My mind thinks creatively and I think of so many different possibilities in any situation, but I’m not a fan of the mundane administrative stuff. I can do it no problems, but I don’t really enjoy it.

Thus, I’m always excited when I get paperwork out of the way🎉🎉🎉

8: I’m on my comfy bed and it’s time for a nice cup of rooibos tea in a minute☕️

9: Oh, yes. I got some more administrative stuff done on Wednesday, had to go to a bank to do it🏦. Another thing marked off, something I wanted to do for ages. Tick✔️

10: Got myself a magazine before, when I got groceries. It’s a well-being magazine entitled “ Life Coach, reboot your thinking.” I love reading and listening to things that can help better one’s life and help with one’s emotions.

My problem is CFS brain fog though, so I listen👂 to more things than I do reading📚. I looooove reading though, and do it whenever my brain lets me. I’m grateful for books and I love YouTube too, I listen to lots of things on YouTube.

Well that’s it for today, I’m going to crash now and have my cuppa. It’s been a big few days and I hardly slept one night as I was really struggling to breathe, but I managed to sleep last night.

Take care🧡

November 6, 2021

We are seeing more of these, seemingly "Self Evident" problems taking over companies and Government as well. The more "Artificial Intelligence" is taking over the computer systems the more problems we are going to see. The lower level systems, not having consciousness, cannot "Intuit" problems either before or as they arise. Since they cannot, they do not have any problem solving components built into the programme or at what point does it need to kick the problem back to an actual human being?

Hope your able to get it worked out soon!

Edited November 6, 2021 by Colonial

November 12, 2021

On 11/7/2021 at 5:21 AM, Colonial said:

We are seeing more of these, seemingly "Self Evident" problems taking over companies and Government as well. The more "Artificial Intelligence" is taking over the computer systems the more problems we are going to see. The lower level systems, not having consciousness, cannot "Intuit" problems either before or as they arise. Since they cannot, they do not have any problem solving components built into the programme or at what point does it need to kick the problem back to an actual human being?

Hope your able to get it worked out soon!

That’s so true Colonial,

We really need to interact with human beings, artificial intelligence certainly messes things up. By the way, you are a fantastic writer. Do you write for work?

I’m so sick at the moment, I’m really struggling to breathe, and CFS has been bad. I’ve put the candida diet on the back burner for now, as I’m just too sick to cope with the die off, as well as struggling to breathe, withdrawals and being barely functional. Life is really hard at the moment.

One day at a time does it🧡

November 12, 2021

Thinking of you @Carmie

and hoping better and healthier days are ahead of you.
You are an inspiration to many of us here.

Take care of yourself.

November 13, 2021

Hope you're finding some relaxation and comfort this weekend Carmie

November 15, 2021

Hi Carmie, I've just checked in here after a long time away. I hope you're feeling better soon. Sending you lots of healing thoughts and (((HUGS))).

November 21, 2021

On 11/12/2021 at 6:04 PM, Longroadhome said:

Thinking of you @Carmie

and hoping better and healthier days are ahead of you.
You are an inspiration to many of us here.

Take care of yourself.

On 11/13/2021 at 5:49 PM, hayduke said:

Hope you're finding some relaxation and comfort this weekend Carmie

On 11/15/2021 at 2:59 PM, Songbird said:

Hi Carmie, I've just checked in here after a long time away. I hope you're feeling better soon. Sending you lots of healing thoughts and (((HUGS))).

Hi longroadhome, Hayduke and Songbird,

Thanks so much for your kind messages. I’m so very sick and struggling to breathe. The vaccine caused such a major immune flare and it doesn’t seem to want to settle. I had my second dose about five weeks ago, but have been suffering since a week after the first dose. It’s really bad today😔

One hour at a time does it.

I’m tapering by 0.05mg either tonight or tomorrow night, which will take me down to 4.05mg.

Sending hugs🤗

November 21, 2021

So sorry to hear you’re struggling Carmie. We just don’t know how we’re going to react to these vaccinations.
I really hope it starts to settle for you very soon.
How do you manage to get around do you have mobility scooter?
and Is someone looking after your needs while your immobile?
We have carers in England that come to your home and help with preparing simple meals and washing and dressing etc Though this comes at a cost to the user . Our National Health Service will pay a visit to your home to access equipment you may need that will make life easier. Things such as seats for showering, frames for walking and rails and ramps etc they will provide these FOC on loan for however long they are needed.

Fingers crossed 🤞 for better days ahead Carmie

November 21, 2021

25 minutes ago, Longroadhome said:

So sorry to hear you’re struggling Carmie. We just don’t know how we’re going to react to these vaccinations.
I really hope it starts to settle for you very soon.
How do you manage to get around do you have mobility scooter?
and Is someone looking after your needs while your immobile?
We have carers in England that come to your home and help with preparing simple meals and washing and dressing etc Though this comes at a cost to the user . Our National Health Service will pay a visit to your home to access equipment you may need that will make life easier. Things such as seats for showering, frames for walking and rails and ramps etc they will provide these FOC on loan for however long they are needed.

Fingers crossed 🤞 for better days ahead Carmie

Hi Longroadhome,

I’m okay when it comes to taking care of myself, I just do things in my own time and slowly. I’m in bed today ( due to CFS ) but I’ve managed to get up to cook etc.

It’s just I get so claustrophobic with my breathing, it’s awful. It’s like breathing through a straw. I have COPD, plus an autoimmune illness that attacks my lungs. Vaccines create lots of antibodies, and antibodies think my lungs are foreign and so go on a full blown attack trying to destroy them. My last flare lasted nine months, it was triggered by going to the dentist.

My husband lives in a care home and his care is funded by the National Disability Insurance Scheme. He pays rent and board there, but the scheme funds the support workers.

He also has external support workers funded by the NDIS who take him out. I join them a lot of the time, it’s handy as I can run errands too when I’m out with them.

We usually do lots of fun things though. We went to the beach twice this week. I was so ill, though it was still nice lying on the grass near the water. Speaking of the beach, my happy place, I might write a gratitude list:

1. Yes, I got to go to the beach twice this week. Yay!

2. It was lovely lying under shady trees. Love big green shady trees.

3. The sound of crashing waves is just marvellous.

4. Sand under one’s feet is glorious.

5. The chirping of birds in the trees is delightful.

6. Had some yummy watermelon and mangoes at the beach.

7. Oh yes, and speaking of fruit, I don’t have to give it up temporarily as I had another candida test done this week and I no longer have a problem there. I can eat whatever fruit I like. On the autoimmune diet, I’m allowed 20g of fructose, though I have a little splurge over that some days. Some days I don’t eat any fruit at all, so I guess it all balances out anyway.

Just the treatment with the rife machine that my natural therapist uses, and my every day autoimmune diet got it under control. So happy about that. I’ve lost another two kilos though, I hope I don’t lose anymore weight.

Anyway, I’m grateful for my natural practitioner, he’s been great.

8. It’s nice having my fan blowing on me at the moment.

9. I managed to write a bunch of letters today and yesterday.

10. I managed to get two important errands done on Thursday. I still have a number of other important errands to do, but one day at a time does it.

Have a happy day🧡

November 21, 2021

Just recording that I did my drop from 4.10mg to 4.05mg tonight.

Good night one and all from Australia🧡

November 21, 2021

How long have you had the two conditions and is the autoimmune anything to do with the AD your tapering off ?
My father had chronic asthma and he always said it was like trying to breath with a pillow over his face. Awful.

Carmie: accidently doubling up on Seroquel one day while tapering

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