Carmie: accidently doubling up on Seroquel one day while tapering

[hayduke]

Really good to hear you're getting a bit more comfort @Carmie.  Improvements are good news 🙂

Glad you have room under your house so you have a way to entertain friends.  Queenslander houses are cool like that!

[Carmie]

3 minutes ago, hayduke said:

Really good to hear you're getting a bit more comfort @Carmie.  Improvements are good news 🙂

Glad you have room under your house so you have a way to entertain friends.  Queenslander houses are cool like that!

Hey there Hayduke, how are you doing? I know life has been hard for you too. 
 

I don’t live in a Queenslander, I live in a unit. We just chilled downstairs on the grass. One of my friend’s boys found a small bouncy ball on the lawn that the neighbours that just moved out had left behind. There was another one that was thrown on my balcony that they left behind too, so then I had a second ball to give them. That kept them both entertained. They didn’t have to share😁

 

I can’t go anywhere at the moment because of my lungs and too many viruses around. I can’t get into cars, too risky, though I did have to go to the doctors one day. My friends just meet me outdoors, though I’m been too sick to catch up with anyone much. Just in survival mode. 
 

My friends always contact me though. There’s nothing they can do to help me with my breathing and health issues, but that doesn’t seem to deter them. They don’t abandon me, they  are always there n are always asking me what they can do to help. They are so loyal, I treasure loyalty in friends. I’ve always been there for my friends and it’s reciprocal. I’m am sooooo grateful for my friends. They’re there even when I’m bawling my eyes out.

Hope you’re coping as best you can too🤗

[hayduke]

1 minute ago, Carmie said:

Hey there Hayduke, how are you doing? I know life has been hard for you too. 
 

I don’t live in a Queenslander, I live in a unit. We just chilled downstairs on the grass. One of my friend’s boys found a small bouncy ball on the lawn that the neighbours that just moved out had left behind. There was another one that was thrown on my balcony that they left behind too, so then I had a second ball to give them. That kept them both entertained. They didn’t have to share😁

 

I can’t go anywhere at the moment because of my lungs and too many viruses around. I can’t get into cars, too risky, though I did have to go to the doctors one day. My friends just meet me outdoors, though I’m been too sick to catch up with anyone much. Just in survival mode. 
 

My friends always contact me though. There’s nothing they can do to help me with my breathing and health issues, but that doesn’t seem to deter them. They don’t abandon me, they  are always there n are always asking me what they can do to help. They are so loyal, I treasure loyalty in friends. I’ve always been there for my friends and it’s reciprocal. I’m am sooooo grateful for my friends. They’re there even when I’m bawling my eyes out.

Hope you’re coping as best you can too🤗

 

Hey, I'm doing ok.  Gritting my teeth a bit but looking after myself and getting on with it, sticking to my plans.

 

Time with friends is the best.  It's great when your mates have your back.  I've had to sideline a couple lately, but am very appreciative of those who are there for me, especially in the hard times as well as the fun.

 

Sorry to hear cars are too risky at the moment.  I hope you will be on the mend and able to get around more before long.

 

Really good to hear you've got good company 🙂  Qld is a good spot to be outdoors much of the year.

[direstraits]

Hi @Carmie!so glad to hear from you... been so worried about you.

Sorry you're still suffering so much but glad you felt a little bit of relief. Hope you get more.keep in touch.

Sending hugs and love.❤️❤️❤️

[LostInCanada]

@Carmie girl you are a rockstar. In the midst of all this you did a taper! Wow. 💯❤️🤗

[Carmie]

14 hours ago, hayduke said:

 

Hey, I'm doing ok.  Gritting my teeth a bit but looking after myself and getting on with it, sticking to my plans.

 

Time with friends is the best.  It's great when your mates have your back.  I've had to sideline a couple lately, but am very appreciative of those who are there for me, especially in the hard times as well as the fun.

 

Sorry to hear cars are too risky at the moment.  I hope you will be on the mend and able to get around more before long.

 

Really good to hear you've got good company 🙂  Qld is a good spot to be outdoors much of the year.

Sorry to hear you were sidelined by some of your friends Hayduke, I’m glad you have friends that are there for you when the going gets tough though. They are such a blessing, aren’t they? 
 

Because of being so sick, many days I didn’t feel like speaking to anyone. Friends rang, but I just messaged them back as I was just too ill to talk. I appreciated all their messages. When I have chatted to friends on the phone, most of the time I was just bawling my eyes out, suffocating. It was nice this week to catch up with friends downstairs on a “bearable” day at last. 
 

Yes, Queensland is great for being outdoors. We don’t get a very long winter. It’s a gorgeous day today, the weather is perfect. I hope you’re having a good day🤗

[Carmie]

12 hours ago, direstraits said:

Hi @Carmie!so glad to hear from you... been so worried about you.

Sorry you're still suffering so much but glad you felt a little bit of relief. Hope you get more.keep in touch.

Sending hugs and love.❤️❤️❤️

 

11 hours ago, LostInCanada said:

@Carmie girl you are a rockstar. In the midst of all this you did a taper! Wow. 💯❤️🤗

Hi there direstraits and LostinCanada, 

 

Thank you for your kind messages. I’m just taking an hour at a time. Life has just been awful. My taper went fine though LostinCanada, I did it on the 30th of July. If I’m okay still in two or three weeks I’ll do another drop. I make decisions a day at a time. 
 

Might write a gratitude list. I haven’t really been up to anything much, but here goes:

 

1. It’s the most glorious day, the weather is perfect☀️☀️☀️
 

2. I slept really well last night. I’m always totally exhausted when I wake up because of CFS, but it’s great to get a good night’s sleep. Some nights it’s so hard to fall asleep because of my breathing, or my breathing will wake me up at night. 
 

I have really vivid dreams now and I dream a lot, due to the low dose naltrexone. Some people get nightmares on it, but I’m good on it. I’m getting lots of REM sleep, which is good for you. 
 

3. I just managed to throw out a few things from my garage that I’ve been meaning to get rid of forever. I’m a massive fan of decluttering. It always feels good to get rid of things. 
 

4. I might make some squid today. I ate all the prawns my husband’s carer got me the other day, and now I’m on to the squid. It’s nearly 1pm, I haven’t eaten anything yet. I usually eat my first meal around noon or so. Time for calamari soon. 
 

5. Going to read some more of my book after lunch if my brain lets me. Love books. Good distraction! 
 

6. I have a big pile of dishes in the sink that I haven’t had the strength to wash. I’m determined they will get done today, and I’ll be grateful once I’ve been able to do them. I’m grateful I have crockery and cutlery.

 

7. I’m grateful for YouTube. Good distraction!

 

8. I’m grateful for all the clothes I have. I got a couple of lovely crochet cardigans and a crochet top recently in creamy colours. Love boho style clothes. Love that you can buy things online. 
 

9. I love my pill organisers where I put in my millions of supplements. They stop me getting confused as to if I’ve taken something or not. I do tend to forget my fish oil quite a bit, as it’s in the fridge. 
 

10. I’m grateful for my bed, which I’m lying on right now. 
 

Sending hugs🤗🤗

[Oaktree1]

hi Carmie

 

Just happy to see that you posted a bit here after the post saying you wouldn't be on here much and that your friends are still there for you and they keep coming back.  God what I would give to have your personality and ability with people. 

 

(hehe) I am a Harry and Meghan addict too - I am with you on the narcissism of the latter - however the pair of them have proved to be wonderful distractions in the past few years for me .  If things are really awful I just type both of their names (mainly her's to be honest) into the phone and seeing the resulting self serving bare faced manipulation takes my mind off things. 

 

There is a guy on Youtube called Daniel Boland from Sheffield in the UK who does very funny videos of both of them - he plays audio from the book 'Spare' and does a very amusing take down of the pair of them.  Sadly he's running out of material now as Meghan is reverting back to being a full time influencer on Instagram or something.  She's smart (I'll give her that).  But if you wanted a laugh ...I suppose we all find different things funny.  He makes me laugh anyway and that's hard nowadays.

 

I know people have taken strong sides on H&M and they're either on one or the other camp and I'm not a great fan of the royal family or anything but this pair just take the biscuit for me.  The main thing is that its a distraction. 

 

I haven't seen the Doc Martin series but love Martin Clunes too.  He was in a comedy sitcom for years called 'Men behaving badly' I used to get a great laugh out of that  - himself and another guy Neil Morrissey play a pair of eejits who continuously annoy their girlfriends with their amazing fecklessness and stupidity.  Maybe you're already seen it. He has a very good role in 'Inspector Morse' with John Thaw the detective series that ran for a long time. I love that series but it's a bit dark if you're in a low mood.

 

Used to love John Grisham back in the day when I was able to read fiction - happy days.

 

Hope you get the best of enjoyment out of the next few days.

 

Oaktree1

[Carmie]

Hey there @Oaktree1

 

Hope you’re having a good day. Yeah, I’ve barely been on this site for a few months. My breathing has just been so severe. I don’t feel like I’m ever going to go into remission. Maybe my lungs will pack it in before I go into remission. Burst into tears again yesterday. I’m just a blubbering mess lately. 

 

The Harry n Meghan saga is certainly a good distraction. The only thing that got me interested in it was seeing a narcissist in action. I’ve dealt with them firsthand. It wasn’t really so much about the royal family. Watching all of Meghan’s manipulations and how she can’t see that a lot of people can see through them is astounding. Daniel Boland swears too much, so I don’t really watch his videos. I did just finish reading  Revenge, by Tom Bower though. That got me interested in the inner workings of the palace, so I’ve ordered Courtiers, by Valentine Low now. At the moment I’m on page 232 of John Grisham’s The Street Lawyer. 
 

I might write a gratitude list. Here goes:

 

* I’m lying on my comfy bed, with my big u-shaped pillow. Grateful for small comforts. 
*There was beautiful sunshine out this morning, then a bit of rain. The best of both worlds. 

*I’m grateful I actually had the brain power to start and finish a book in a few days. That hasn’t happened in an extremely long time. 

*I looove books. I’m enjoying reading The Street Lawyer at the moment. I’m grateful for distractions. Let’s see if I can finish it in the next couple of days. That will certainly be a miracle, if I finish two books, one after the other in a short period of time. Due to CFS brain fog I keep starting books and then never get around to finishing them. I start novels, but by the time I get around to them again I’ve forgotten the beginning and have to start again. My memory is really bad and if there are two many characters in a book, I’ll write them down on a piece of paper😁. That way I don’t have to go: “ Who is that again?” Or I’ll just underline the main characters n I can go back to see who they were. Oh, to have a brain that works. 

*I’m grateful I had the strength to wash my clothes today. 
* I’m grateful I have glasses so I can see properly. 
* I’m grateful that my groceries were delivered this morning. 

*I enjoyed my shower this morning. It took me a while to get around to doing it as I was so weak and faint. I think there’s something wrong with my inner ears as I’m always faint and I can’t stand on one leg without falling over. There’s a balance thing happening there. I can’t stand on one spot for long or sit up straight on a chair for long.  I always put my feet up or sit on the ground. Anyway, the shower was refreshing. 
 

* I’m grateful for distractions! I have to keep distracting myself. 
 

* I feel like I’m going to burst into tears again🥲Feeling like you’re suffocating all the time is horrendous. I’m grateful though that yesterday FasterEft helped me to cope as soon as I started bursting into tears. The last week whenever I started crying I’d do it. I release all my emotions. 
 

My breathing is “bearable” today. I’m still struggling to breathe, but it’s about a 6 or a 7, instead of a 10. One hour at a time does it. 
 

Sending hugs🤗

Edited August 29, 2023 by Carmie
Added tag

[Carmie]

Time for a gratitude list. I’m kind of “frozen” this morning. My body has been so weak and I can’t get motivated to do anything. CFS is bad and when I woke up I still had to lie in bed for hours. Anyway, I thought writing a gratitude list might be good for my spirits, so here goes: 

 

*My breathing is “bearable” again today. I just take an hour at a time, but it’s good to have periods of time where the intensity is dialed down a bit. Can’t give up the hope of going into remission. 
 

* I just got a parcel home delivered. I’m so grateful for home delivery. 
*Got a bunch of those storage cubes delivered, so when I have a bit of strength this week I’ll do a bit of organising. Love organising and decluttering. Been doing a bit of it here and there recently. I’m grateful when I can actually find things, especially with my brain fog. 

*I’m grateful that I got around to finally organising all my DVDs. I still love DVDs. I bought two large cases that fit over 500 DVDs in them each. In one I put all the period dramas and in the other I put other TV shows. If I keep collecting TV shows I might have to get a third case. Shows are a great distraction.
 

I’ve got smaller cases for movies, as I tend to buy shows more than movies. Boy, it’s good to actually be able to find the DVDs you’re looking for. I love throwing out the sleeves they came in.  I really am a massive fan of decluttering😁I do stream shows as well, but when I like a show I like to have it on DVD.
 

*I’m grateful for my heater, it’s not really freezing here at the moment, but even when it’s just a bit nippy I put on my heater as I find it so comforting. When you’re ill you need all the comfort you can get. 
 

The electricity bill isn’t comforting though😂. I just got mine, it was $500 Australian for three months. If you don’t pay it by the due date they charge another $100. I always pay my bills on time.

 

*I get these really yummy toasted coconut flakes with salt. Such a treat! My cat loves them, she’s tasted them. I can never eat them in peace now, as soon as she hears the packet she runs over. I can’t really give them to her because the salt isn’t good for her. I’ve created a monster😸

 

*Well, I’m lying on my bed, trying to think of what else to add to my gratitude list…. I love my Himalayan salt lamp, it’s on 24/7 in my bedroom, where I mainly reside. I just love the warm glow. 
 

*Oh, yeah, I got some more towels and tea towels in the parcel before. Sometimes I’ve been too sick to do any washing for weeks, so it’s good to have plenty of the things I use on a daily basis. I got a few more sheets a while back too, turquoise, as they remind me of the beach. 
*I got some more glasses too today, tumblers. I didn’t have many left. Things break. I also go some teaspoons, but they were really tiny. They’re cute, but I think I might order some bigger ones as well. 
 

*I’m grateful for water, love drinking water. 
 

Well, I made it to ten. I think it’s time to make some lunch now, if I can manage to unglue myself from the bed. 
 

🧡🧡🧡
 

 

[Carmie]

Hi beautiful people, I’m so sorry I haven’t been able to interact too much on all your threads lately. I’m not doing good. Withdrawals are bearable, though my nervous system is totally shot because of them. Windows and waves. 
 

Struggling to breathe has been so severe. It keeps waking me up early, and some nights I struggle to sleep because of it. I’m barely hanging in there. I hate waking up in the morning suffocating. Will I ever go into remission again???

 

Caught up with friends this week in the park around the corner. It was lovely, but I ended up in tears as I was feeling so claustrophobic due to my breathing. I made myself socialise. Isolating myself is not good for me emotionally. My friends contact me all the time by phone, but I need to see friends in person, even if I’m a total mess. 
 

I can’t have people around my place because of my lungs, it’s  too dangerous if I catch a cold or flu or Covid. Outdoors is the way to go, and there’s a nice park a block away. A bike and walking track and creek are behind my place too. 
 

I went for a little walk before and then sat near the bike track. Cranked up the music on my headphones. Was listening to Simon and Garfunkel. Now I’m home and still have earphone on, I’m cranking up Twenty One Pilots. Their concert was amazing. Everyone was singing every single song when I went to their concert.
 

I would have loved to have seen Simon and Garfunkel in concert, but they’re not together anymore. Paul Simon is the most amazing artist. I did see a tribute concert which was absolutely amazing and got standing ovations everywhere they went around the world.  I miss going to concerts, but can’t now because of my lungs. 
 

One day at a time does it, pleeeeeeeeeease can I go into remission and be able to breathe again.
 

Okay, singing along to Twenty One Pilots now…. I’m running for my life…🎤🎤🎤🎼🎼🎼🎼
 

Sending much love to all🧡

Edited September 11, 2023 by Carmie
Typo🤪

[Go2zero]

Dear @Carmie, so sorry to read that you still have problems with breathing. Do you have any idea what is wrong? What do doctors say about it? I understand you also visit a natural therapist now and then. What does he/she say?

 

Good to hear that you keep socialising. And that you enjoy music. So beautiful to see how say stay in the Light.

 

Keep coming around here. You have a great support group here! 

 

Sending you Love and Light ❤️✨🙏

[Carmie]

4 minutes ago, Go2zero said:

Dear @Carmie, so sorry to read that you still have problems with breathing. Do you have any idea what is wrong? What do doctors say about it? I understand you also visit a natural therapist now and then. What does he/she say?

 

Good to hear that you keep socialising. And that you enjoy music. So beautiful to see how say stay in the Light.

 

Keep coming around here. You have a great support group here! 

 

Sending you Love and Light ❤️✨🙏

Oh, my, dear @Go2zero, snap!! I was just replying on your thread at the same time as you were writing on mine😄

 

I’m 100% sure I have an autoimmune problem. My natural therapist thinks so too. The general GP has no clue what’s wrong with me, but my integrative doctor has put me on low dose naltrexone, which is an a immune regulator. 
 

I know it’s autoimmune because anytime my immune system gets ramped up,I go into a flare. I was in remission before the vaccine, but after the vaccine (which ramps up the immune system) I ended up in a flare, which has lasted for about two years now. I don’t know how to switch off what the vax has done. I’m on a ton of supplements that are supposed to help, plus low dose naltrexone. No success so far. 
 

I’ll try and come on here more, I’m barely keeping my head above water. I’ve still got my headphones on. Twenty One Pilots was one of the best concerts I’ve been to, so interactive. Celine Dion was amazing too, as well as Imagine Dragons. I can’t even remember all the concerts I’ve been too. Coldplay was pretty cool, so was Phil Collins. Poor Phil couldn’t play the drums anymore, because of his health, but his voice was just the same. He was the most amazing drummer. One of his sons played the drums, he takes after his father. 
 

Now that I can’t go to concerts anymore because of my lungs, I’ll just have to crank up concerts at home🎼🎼🎼🎼

 

Thanks again for your encouragement 🧡

[Go2zero]

48 minutes ago, Carmie said:

I know it’s autoimmune because anytime my immune system gets ramped up,I go into a flare. I was in remission before the vaccine, but after the vaccine (which ramps up the immune system) I ended up in a flare, which has lasted for about two years now. I don’t know how to switch off what the vax has done. I’m on a ton of supplements that are supposed to help, plus low dose naltrexone. No success so far. 

 

So sorry to hear dear @Carmie . I understand that you already had autoimmune problems before getting the vaccine? You are certainly not the only one who is dealing with such after the vaccine. I have seen official research that shows that there is clearly a relation between the riks of developing autoimmune disease and the vaccination. But then they say that the advantage of the vaccine would be greater than the risks of it.... Personally I have my big doubts there, considering what info about covid risk themselves and the vaccine risks is coming to the surface more and more lately... 

 

 

56 minutes ago, Carmie said:

Twenty One Pilots was one of the best concerts I’ve been to, so interactive. Celine Dion was amazing too, as well as Imagine Dragons. I can’t even remember all the concerts I’ve been too. Coldplay was pretty cool, so was Phil Collins. Poor Phil couldn’t play the drums anymore, because of his health, but his voice was just the same. He was the most amazing drummer. One of his sons played the drums, he takes after his father. 

 

So we are both music lovers! I make music myself too. I play guitar and I sing. I have been playing in several amateur bands in The Netherlands. Also in 1 band in Spain. It was difficult to keep these bands going. For all kinds of reasons members left and new came again. We had to start then over and over again with rehearsals, before we could go on stage again. I enjoyed playing in those bands a lot, but all these changes were a bit frustrating. 

 

Here in Spain it is more difficult to find the right people to form a band which could play the music I like. I love to play (soft)rock, ballads, blues and some pop. I love the music from end 60's and beginning 70's. A very creative period where music was not so much commercially driven. That really started in the 80's and never stopped again unfortunately.

 

Nowadays most "music" is made on computers. A DJ who performs by playing his computer created music is seen as a big star, whereas musicians playing a real instrument are struggling to get a gig for a bit of money.

 

I do not have to live off it, so I stick to the real stuff 😉. No computers, no backing tracks, but real instruments, real amplifiers (my favourite one is a tube amp from 1964). And no software to "improve" the voice (as done my more and more singers).

 

More and more musicians play with backing tracks and they have a tablet in front with the lyrics. My wife once said: "You know what that is.....?"   "Karaoke", she said.😂🤣

 

Actually I do agree with her. But these musicians are loved by the audience. Unbelievable, but true. Most people have no clue. As long as it sounds nice and they can dance a little it is OK for them.

 

Well, that is how "live music" is often nowadays. I keep going the old fashioned ways, because I enjoy it like that. Sometimes I go to an Open Mic gathering, take my guitar and play and sing a couple of songs. Most people who perform there play on their own. Just guitar and singing. Very basic and pure, which I love.

 

When I was living in the Netherlands I often went to concerts. In Spain is much less going on. Spain is quite traditional with music. Lots of famous bands do not come to Spain, or just for 1 concert in Madrid or Barcelona (both are 450 kms away from our place).

 

But I have seen nearly all bands and musicians I wanted to see, like: Rolling Stones, U2, Pink Floyd, John Mayer, Paul McCartney, Eric Clapton, Robert Plant and Jimmy Page, Genesis, Dire Straits, Coldplay, Foo Fighters and many more. So I am a very luck man there 😀.

 

 

 

 

[Carmie]

Hey there dear @Go2zero, How wonderful that you’re a musician! I just love music, but I can’t play any instruments and my singing voice would make the neighbourhood dogs howl😂. Before my lung issues I used to have friends over and we’d have music nights, a lot of them have the most amazing voices. It was so much fun. Karaoke time! Your wife’s comment about musicians nowadays doing karaoke made me laugh.
 

My music tastes are so eclectic. Yeah, 60’s and 70’s music is great, though I do like certain artists from today as well. I remember going to a bowls club one night where they were playing 60’s music, it was such fun dancing to it. I’ve been to a few 60’s nights, I went to a Beatles night one evening too, the musicians were dressed up like them ,they were really terrific. . A fun night! 
 

Looks like you’ve been a concert freak, like me too. We get most of the big acts here in Brisbane. Sorry you don’t get too much of that in Spain, but it’s great you’ve seen most of the bands you like. I haven’t seen Dire Straits, but that would have been amazing. You would have seen Phil Collin’s drumming skills when he was with Genesis. I saw him in 2019 when he came here, the poor thing had to sit down on a stool due to his health issues. His voice was as beautiful as ever, but he couldn’t play the drums. He had two drummers with him, one was his son. He’s keeping it in the family 🥁🥁

 

I’m so sorry that your band members kept leaving, that must have been annoying. That’s fab that you do Open Mic, I used to spend a lot of time just listening to buskers. One of my husband’s support workers a while back had a such a distinctive voice, he played guitar too, and loved the banjo. 
 

I hope you get to make some music today🧡

[Carmie]

Okay, woke up early really scared and struggling to breathe as usual. Ahhhh!! It’s the afternoon now. I’m laughing my head off at the moment as I’ve got the music cranked up and my cat looks concerned 😹😹😹😹 You should see her face. Hilarious!!!! Not a fan of music, hey? 🤣

 

I’m such a mess. An hour at a time, does it. I’m deciding whether to do another drop tonight or tomorrow. It’s nearly been six and a half weeks since my last drop. 
 

Okay, time to crank up more music🎤🎤🥁🥁

[j1290]

3 hours ago, Carmie said:

Okay, woke up early really scared and struggling to breathe as usual. Ahhhh!! It’s the afternoon now. I’m laughing my head off at the moment as I’ve got the music cranked up and my cat looks concerned 😹😹😹😹 You should see her face. Hilarious!!!! Not a fan of music, hey? 🤣

 

I’m such a mess. An hour at a time, does it. I’m deciding whether to do another drop tonight or tomorrow. It’s nearly been six and a half weeks since my last drop. 
 

Okay, time to crank up more music🎤🎤🥁🥁

I can relate to this.  Up, down, and all around!  😄🙃  I only wish I had a kitty to share it with 😸😹

Music can be really amazing while tapering.  Glad to hear you're making the best of it!

[Onmyway]

You made me smile @Carmie. I love your spirit and so glad that you are on here and we get to share this weird journey! I am so grateful for you!

[Go2zero]

6 hours ago, Carmie said:

Okay, woke up early really scared and struggling to breathe as usual. Ahhhh!! It’s the afternoon now. I’m laughing my head off at the moment as I’ve got the music cranked up and my cat looks concerned 😹😹😹😹 You should see her face. Hilarious!!!! Not a fan of music, hey? 🤣

 

I love your humor and positivity dear @Carmie!   Such a good thing and both great helpers in healing!

 

12 hours ago, Carmie said:

You would have seen Phil Collin’s drumming skills when he was with Genesis.

 

I was lucky to see him drumming in 1990 in London. He was performing there with Genesis and did also some work of his own.

 

Look at this song and even more the medley later in the video. This is from the concert in London where I was. Phil Collins is such a great musician. And very funny too. I love how he performs as one of the Blues Brothers in this medley.

 

Hope this video brightens up your day!

 

 

[Carmie]

Dear @j1290 @Onmyway @Go2zero thanks for popping over, I appreciate all your loving and kind words, 

 

Thanks for the video Go2zero, it was cool! 😎 When I saw Phil Collins, he was doing the Not Dead Yet tour😁

 

This journey is certainly up, down and around John. My tapering is just the usual windows and waves thing. I dropped again last night. My body attacking my lungs non stop is causing more concern than anything at the moment. It’s suffocating, just ended up bawling my eyes out again an hour ago.
 

Let’s see when the waves start hitting again after this last drop. Something to look forward to😜
 

Glad I made you smile Onmyway. Amidst all the tears🥲, it’s good to have a laugh. 

 

My CFS brain fog is a bit thick at the moment, so don’t have the brainpower to write a gratitude list. Maybe tomorrow. Come back brain🧠🤓

 

Sending much love🧡

[Rosetta]

Hello, dear Carmie.  I’m thinking of you.  It pains me so that your lungs are under attack.  You are so strong and brave.  I hope your condition eases soon.

 

🧚🏻‍♀️Rosetta

[Carmie]

17 hours ago, Rosetta said:

Hello, dear Carmie.  I’m thinking of you.  It pains me so that your lungs are under attack.  You are so strong and brave.  I hope your condition eases soon.

 

🧚🏻‍♀️Rosetta

Thank you so much for your kind words Rosetta, I hope you’re doing okay.

 

I’m going to write a gratitude list despite not feeling positive at all. Here goes:

 

1. I just want to cry all the time as I’m suffocating, but I’m soooooo grateful for distractions. I’ve just been cranking up the music. 
 

2. I’m going to be seeing some of my friends on Zoom in about an hour and a half. 
 

3. I’m grateful for the gift of giving. I love sending friends gifts. It makes me so happy. I love giving, just for the sake of giving. It warms my heart. 

 

4. A lovely young teenager put together a flat pack for me. It was a bed side table. I just bought him a saw because he said he loves carpentry. I bought one for myself first to make sure it worked okay as I had to saw apart a tree on my balcony that was almost dead. It worked fantastic. I might become a handy woman😂

 

5. I feel too miserable to write gratitude lists, but I’m grateful I can do this one. Boy, life is hard.
 

6. I’m grateful I was able to do another drop of the Seroquel this week. 
 

7. I’m grateful I’m able to do my washing today. One load down, and the second load in the machine. 
 

8. I’m grateful for a beautiful text from one of my friends this morning.

 

9. I’m grateful I had the brain power to write some letters this morning. 
 

10. I still haven’t finished reading The Street Lawyer, but I love books. I surprised myself that I read the book before that in a few days. My brain works sometimes. Hopefully, I’ll finish this novel in the next week. 
 

Okay, I usually only do ten gratitudes on here, but my number 11 is that flu season is nearly over and I’ll be able to get out n about soon again with my husband and his care workers. I’ll wear a mask in the car and then we’ll spend time outdoors. I can’t wait to see the beach again and go to parks etc. 

 

 🧡🧡🧡🧡🧡

[j1290]

15 hours ago, Carmie said:

I’m going to write a gratitude list despite not feeling positive at all. Here goes:

I think this is such a winning attitude.  I'm super proud of you, Carmie!

[littlebird]

17 hours ago, Carmie said:

5. I feel too miserable to write gratitude lists, but I’m grateful I can do this one. Boy, life is hard.
 

6. I’m grateful I was able to do another drop of the Seroquel this week. 

Hoo boy, I could have written this list! Right there with you, friend. Seroquel tapering really adds an extra layer of tough to when life gets rough, doesn't it? Praying your breathing improves soon.

 

17 hours ago, Carmie said:

Okay, I usually only do ten gratitudes on here, but my number 11 is that flu season is nearly over and I’ll be able to get out n about soon again with my husband and his care workers. I’ll wear a mask in the car and then we’ll spend time outdoors. I can’t wait to see the beach again and go to parks etc. 

This is wonderful news! Hoping you're out on the beach and in nature soon. Glad you're being careful and protecting yourself, dear Carmie. 

[Carmie]

Good morning from Aussie Land @j1290 @littlebird, 

 

Thank you for your messages, much appreciated.

 

Time for another gratitude list, here goes: 

 

1. I‘ve got my leg massager on my legs to get my lymphatic system moving. I used to use it daily, I might start using it regularly again. Yay for health equipment where you don’t have to do anything, but the gadget does all the work. 
 

2. I managed to dry skin brush the top half of my body, so I get the lymphatic system moving there too. 
 

3. My printer just arrived, I only use it to photocopy really. I don’t have a computer to connect it to. I don’t know how to connect my iPad to the printer. I’m not very technologically minded. Maybe I’ll figure it out one day. I’m dreading even trying to get the photocopier to work, as it always takes me forever to figure these kinds of things out.
 

It’s still in its box. I’ll take the scary thing out of its box this morning😬. I’m grateful I have it though, as I need to photocopy some important papers. My last one died and it wasn’t even that old, they don’t seem to last long. 
 

4. I’m grateful for habits. I’m going to change my quiet time habits though. I was having quiet time until 9am in the morning and then some quiet time in the evening. It’s time to tweak that. 
 

I’m just going to have quiet time for the first hour in the morning and then a couple of hours in the afternoon. The reason for the quiet time is that it’s good for the nervous system, but I find an hour is enough in the morning. This morning after the quiet time I listened to some encouraging thing, which was also a good start to the day. 
 

I’m changing the quiet evening time to a few hours in the afternoon instead, because a lot of the time by the time evening comes I’m too brain dead to focus on much, so chilling to a movie or a show is the way to go. I did read a little of my novel last night though. 
 

5. I just received a new diary as well. I’m looking forward to organising it.
 

6. I managed to organise some paperwork that needed doing, which is a relief. I’ve still got other paperwork to do. When you’ve got things like that to do, it’s hard to settle your brain until it’s done. When one’s brain fog is severe though, these things can be overwhelming. I’m grateful whenever I get a bit of paperwork done. 
 

7. I’m grateful for Netflix and chill. Just watching things that don’t take much brain power. 
 

8. I’m grateful for showers. Nice and refreshing. 
 

9. I’m grateful for water, the best drink ever. I must get some sparkling water as well. 
 

10. Lately I’ve been getting some more crockery for the kitchen, which has been handy. 
 

The end😁🧡

[littlebird]

1 minute ago, Carmie said:

I’m just going to have quiet time for the first hour in the morning and then a couple of hours in the afternoon. The reason for the quiet time is that it’s good for the nervous system,

Oh wow, never thought about quite like that! Of course it would be. Thank you, wise Carmie. I'd been craving alone time and quiet, perhaps my nervous system has been asking for something here.

 

2 minutes ago, Carmie said:

I‘ve got my leg massager on my legs to get my lymphatic system moving. I used to use it daily, I might start using it regularly again. Yay for health equipment where you don’t have to do anything, but the gadget does all the work

This sounds sooooooo nice, I hope you do start using it daily again! Maybe you can add in some extra self-care while you do it with a nice lavender eye mask or something? So glad you have this, bet your body appreciates the love.

 

3 minutes ago, Carmie said:

My printer just arrived, I only use it to photocopy really. I don’t have a computer to connect it to. I don’t know how to connect my iPad to the printer. I’m not very technologically minded. Maybe I’ll figure it out one day. I’m dreading even trying to get the photocopier to work, as it always takes me forever to figure these kinds of things out.

Ha, I wish this global community was a local one! I'd so pop on an N95 and come help you get this going. 🤣 If the printer can connect to wifi, it should be pretty straight-forward to get your iPad to print.

 

Do you ever look up youtube video tutorials? Sometimes that helps me when the cog fog is bad and reading instructions isn't getting through.

 

4 minutes ago, Carmie said:

I must get some sparkling water as well.

This has been my big tapering treat! Since discovering that alcohol didn't play well with psych meds (which I didn't learn till this site, wild doctors never clued me in to that), cracking open a sparkling water has become a little bit of a replacement treat for having a beer after a long day. Dangit I miss the beer sometimes 🥲 but it's a decent replacement and good for hydration. They have so many delicious flavors of sparkling water now! I've enjoyed trying new ones out.

[Fifree]

On 9/16/2023 at 1:39 PM, Carmie said:

flu season is nearly over and I’ll be able to get out n about soon again with my husband and his care workers. I’ll wear a mask in the car and then we’ll spend time outdoors. I can’t wait to see the beach again and go to parks etc

So glad to hear Carmie. The weather has been gorgeous. You’ve done so well to get through the last couple of months in iso. 
 

23 minutes ago, Carmie said:

I’m grateful for habits

This is such a good idea Carmie. I really lack the self discipline to get started on these things. You are so strong. 
 

 

19 minutes ago, littlebird said:

26 minutes ago, Carmie said:

I’m not very technologically minded. Maybe I’ll figure it out one day. I’m dreading even trying to get the photocopier to work, as it always takes me forever to figure these kinds of things out.

Ha, I wish this global community was a local one! I'd so pop on an N95 and come help you get this going. 🤣 If the printer can connect to wifi, it should be pretty straight-forward to get your iPad to print.

 

I could help with this for real if you wanted Carmie. Does your printer say «  AirPrint » on the box anywhere? If so, printing from iPad should be ok. 

[j1290]

1 hour ago, Carmie said:

Good morning from Aussie Land

Good morning down under!  Love your list.  Don't ask me about the printer/scanner, I want to chuck those things out the window myself 😄

[Onmyway]

Hi @Carmie

just popping by to say I am thinking of you. 
OMW

[Carmie]

Hello dear @littlebird @Fifree @j1290 @Onmyway

 

I hope that you’re all coping as best you can. Thanks for offers for helping with my printer, it’s all done now. Woohoo! 
 

I’m going to write a little gratitude list. I haven’t done any in a week or so. Here I go again 😁: 

 

1. I had my sister over for a number of days. I don’t normally have people over, but I haven’t seen her in years. She drove up from the Coast to visit. It was so nice, and I felt a bit more normal having someone at my actual place for a change. I’m usually on my own at home because of the risk of catching anything. 
 

2. We did a million crosswords. We love doing crosswords together. The minds of two people are better than one.

 

3. We cooked and ate and ate😋 😁

 

4. We chilled watching Cranford and Return To Cranford📺🎞We’re both fans of periods dramas, and I have a million DVDs. She hadn’t seen this series yet. After that I just played her the first episode of Larkrise To Candleford so she could see what it was about. It’s too long to watch in a couple days, especially when we were in a crossword frenzy. Then we watched an episode or two of Jeeves and Wooster. Love Hugh Laurie, great actor. He’s fab in House too. 
 

5. Sis helped me with the printer🖨. You had to download an app and everything. It’s all set up and now it’s easy for me to use. I can print off my iPad and photocopy. Finally I’m using a printer for printing, instead of just using them as photocopiers.
 

6. I also finally got my hair coloured with the henna I had here that I bought years ago. Sis did it, and bye bye grey hairs👋👋
 

7. I managed to finish getting all the important paperwork done for one thing that needed doing. Sent it away today. Still have more paperwork to do for other things. Why is there always so much paperwork??? I’m grateful I got some of it done. 
 

8. I’m glad my cat is okay. She wasn’t eating for a few days and she’s such a guts normally. She came good.

 

9. Just had a nice warm cup of bone broth. Maybe I’ll have another. 
 

10. Gonna chill to some more of Jeeves and Wooster now. Imagine having a valet or a lady’s maid that takes care of all your chores etc😁Wooster is a rich bachelor with a leisurely life. Jeeves always comes to his rescue as he gets into trouble. 

 

Okie dokie, that’s another list down. 
 

Sending big hugs🤗🧡

[hayduke]

4 hours ago, Carmie said:

Gonna chill to some more of Jeeves and Wooster now. Imagine having a valet or a lady’s maid that takes care of all your chores etc😁Wooster is a rich bachelor with a leisurely life. Jeeves always comes to his rescue as he gets into trouble. 

Glad to hear you've been having some fun!  Jeeves and Wooster is hilarious.

[Carmie]

On 9/25/2023 at 9:37 PM, hayduke said:

Glad to hear you've been having some fun!  Jeeves and Wooster is hilarious.

Hey there dear Hayduke, 

 

How is life treating you? Yes, Jeeves and Wooster is such a cool show😎. I love all the 1920’s architecture, clothes and interior designs. Bertie Wooster’s greeting “ What ho!” always makes me smile. Also that everyone has nicknames, like Bertram is Bertie, and then there’s Gussy, Tuppy, Bicky, Biffy etc. 😁That show is so entertaining. Love Hugh Laurie in it, good ol’ Bertie!

 

My puddy tat has been really sick😿, but I took her to the vet and he fixed her up. She was put on intravenous antibiotics and some other stuff, and I’m putting probiotics in her food for a while. I’m amazed she hasn’t noticed that I’ve snuck the probiotics into the food, she eats it with gusto.

 

I have to laugh as I told my friends that the vet took X-rays, blood tests and my bank account🤣🤣. It costs a fortune, I payed over $1,700. I’m so happy she’s well again though. For ages she was only able to eat little bits of food at a time, otherwise she’d regurgitate it. I always thought it was because she was swallowing too much air as she eats so quickly. Recently though there were a few days she wouldn’t eat, I knew then there was something wrong, as she’s such a guts. She also started vomiting up bile when there was nothing in her stomach. She hasn’t vomited once since she came home from the vet. Yay!🎉🎉

 

Sending hugs your way🤗💛

[hayduke]

39 minutes ago, Carmie said:

Hey there dear Hayduke, 

 

How is life treating you? Yes, Jeeves and Wooster is such a cool show😎. I love all the 1920’s architecture, clothes and interior designs. Bertie Wooster’s greeting “ What ho!” always makes me smile. Also that everyone has nicknames, like Bertram is Bertie, and then there’s Gussy, Tuppy, Bicky, Biffy etc. 😁That show is so entertaining. Love Hugh Laurie in it, good ol’ Bertie!

 

My puddy tat has been really sick😿, but I took her to the vet and he fixed her up. She was put on intravenous antibiotics and some other stuff, and I’m putting probiotics in her food for a while. I’m amazed she hasn’t noticed that I’ve snuck the probiotics into the food, she eats it with gusto.

 

I have to laugh as I told my friends that the vet took X-rays, blood tests and my bank account🤣🤣. It costs a fortune, I payed over $1,700. I’m so happy she’s well again though. For ages she was only able to eat little bits of food at a time, otherwise she’d regurgitate it. I always thought it was because she was swallowing too much air as she eats so quickly. Recently though there were a few days she wouldn’t eat, I knew then there was something wrong, as she’s such a guts. She also started vomiting up bile when there was nothing in her stomach. She hasn’t vomited once since she came home from the vet. Yay!🎉🎉

 

Sending hugs your way🤗💛

Hey there Carmie.  Things haven't been so bad lately, moved house, lining up some work, and today went to the beach which was a really good way to beat the heatwave we've been having - good fun.

I've been really enjoying watching Letterkenny on SBS, crazy Canadian humour.  I had a bit of time to kill lately and have been watching more TV than usual.  Nearly finished Cheers, also Northern Exposure, both old shows and quite different but good when I'm in the mood.

I'm glad to hear your cat is on the mend.  That vet bill is a bear, but it's good to look after our companions 🙂

 

[Carmie]

Glad to hear that things haven’t been too bad with you @hayduke, 

 

Good ol’ tv series to chill with. I haven’t watched Cheers in ages, I should get it on DVD. I’ve got Frasier on DVD, another great show. I’ll have to do a Frasier marathon again in the future. Love the old shows. I started watching a bit of Murder She Wrote recently too. 
 

Yes, our pets are definitely worth the money at the vets. The funny thing was that the card wouldn’t work when I was there, I couldn’t figure out why as there was money in the bank.  When I got home I looked at the news and found out the bank had an outage and everyone was having problems. I couldn’t even do internet banking as I was locked out due to the outage. I payed online the following day. It feels really weird when your card keeps getting declined. I promise there is money in there😂🤣😂
 

I think I might do a gratitude list, here goes: 

 

1. My puddy tat is well again after taking her to the vets. So relieved!😸 She no longer vomits or regurgitates🎉

2. I went for a walk the last few days, it’s so nice to be out and about. My breathing was really severe, but I tried to do something I enjoyed. It’s not good just being indoors. 
 

3. I took photos while out and about, flowers, nature, architecture📸📸
 

4. There’s a new park in my neighbourhood, which is nice. I chilled there for a while too. I also have a creek near my place. 
 

5. Organised to catch up with a friend in the park a block from my place on Thursday. 
 

6. Also hoping to get out and about with my husband and his carer on Friday, if I’m up to it. His carer for today took him for a haircut, as well as to enjoy the outdoors. He has three really fantastic external carers now that take him everywhere, as well as the carers where he lives. 
 

7. Found a nice outdoor restaurant/cafe within walking distance on one of my walks. I get too bored walking down the same streets, so I started walking to different areas. The problem is I have CFS and I have to make sure I have the strength to walk home again. I can’t get a taxi back as it’s too risky with my lungs. Too many people get into them. 
 

I can’t eat at restaurants due to cross contamination, but I can have a nice cup of tea. 
 

8. I love flowers and trees and nature.

 

9. I love the sun and the rain. 
 

10. I love animals. 
 

💛💛💛

[hayduke]

1 minute ago, Carmie said:

Good ol’ tv series to chill with. I haven’t watched Cheers in ages, I should get it on DVD. I’ve got Frasier on DVD, another great show. I’ll have to do a Frasier marathon again in the future. Love the old shows. I started watching a bit of Murder She Wrote recently too. 

I found the family setting in Frasier difficult to watch.  Kelsey Grammer is funny though - I thought he was hilarious as the baddie in Money Plane which pulled no punches about being a silly and fun movie.  Aside from having worked in pubs, I like the characters of Diane and especially Lilith in Cheers.

 

 

5 minutes ago, Carmie said:

Yes, our pets are definitely worth the money at the vets. The funny thing was that the card wouldn’t work when I was there, I couldn’t figure out why as there was money in the bank.  When I got home I looked at the news and found out the bank had an outage and everyone was having problems. I couldn’t even do internet banking as I was locked out due to the outage. I payed online the following day. It feels really weird when your card keeps getting declined. I promise there is money in there😂🤣😂

Yes this is becoming a real problem!  When the 2019 bushfires were rageing, there was little or no internet or phone connectivity so people had to go without already scarce food and petrol if they had no cash on them.  I think it's important to keep cash alive in society.  I even still have a chequebook 🙂

*hugs* to you Carmie

[Carmie]

Yeah, I know what you mean with certain shows @hayduke, you can find certain shows triggering. Someone always used to watch The King Of Queens and I watched quite a number of the episodes with them. It can be quite funny, but everyone is so selfish and it really turned me off the show. Everyone is just out for themselves. 
 

Also, in Everyone Loves Raymond I can’t stand the mum, and his dad wasn’t exactly caring. Marie was a total narcissist and Raymond was selfish a lot of the time too. I always felt sorry for Robert.  I like the writer of the show though, Philip Rosenthal. I love watching him on the show Somebody Feed Phil on Netflix. It’s a cool show and I love his bubbly personality as he goes to different places and tries all kinds of food. 
 

Yes, it’s definitely a good idea to keep cash on hand. I should do that. It’s embarrassing when your bank is down and you can’t use a card, as I just discovered. As you said too, in natural disasters everything is down. I might take some cash out. I only had about $150 of cash on me, that wouldn’t have payed for my cat’s $1,700 vet bill😁
 

💛💛