Carmie: accidently doubling up on Seroquel one day while tapering

[Carmie]

I’m looking forward to finally tapering again at the end of this month. It always feels good to see the numbers go down, no matter how slowly. 
 

Time to do my gratitude list and find the things I’m grateful for, got to keep up my spirits: 

 

(1) Went for a walk, the weather was glorious☀️☀️☀️
 

(2) Got the tickets to all the attractions we’ll be seeing down the Gold Coast next week, if Covid stays at bay. I’m going with my husband and one of his support workers. We didn’t have to pay for the tickets🎫🎫🎫

 

(3) Our hotel is booked too, it’s a lovely place. I’ve stayed there before with friends. It’s a high rise and you can see the beach from there🌊🌊. We didn’t have to pay for this either. We still had NDIS funding left, so they let us do short term accommodation for three nights at Surfers Paradise. 
 

(4) Looking forward to seeing the big aquarium at Seaworld, I could just sit there and watch the fish all day🐠🐟🐠🐡🐠🐟

 

(5) I’m not sure if they have the jelly fish display anymore, I’ve been to Seaworld about six times or so, but they didn’t have it then. I saw pictures and they have these beautiful lights, which make the jelly fish look amazing. Look forward to seeing that if they are still there🧡💛💚💙

 

(6) Look forward to going on a river cruise next week too. I’ve been on one before, but it was morning tea. This cruise is a lunch time buffet with lots of seafood etc 🦐🦀🥗🍣

 

(7) Today seems to be a day of being grateful for things I’m looking forward to. Looking forward to going to Outback Spectacular. We will do that on the first night. It’s a horse show 🐴🐴with a delicious dinner🥩🥘. They give you a cowboy hat. I gave mine away last time to a friend, I’ll keep this one😁

 

(8) And on the theme of being grateful for things that I’m looking forward to: We’re also going to Currumbin Wildlife Sanctuary. I’ve only ever been there once, though I’ve been to Australia Zoo heaps. I remember when Steve Irwin used to do some of the shows at Australia Zoo.  Actually, I remember further back then that. It was just a tiny zoo when his dad started it, it mainly had lizards and snakes. 🐍🦎Okay, back to the subject at hand, looking forward to going to Currumbin, major animal freak here🦘🦘🦘🦘

(9) Seeing some friends🙎🏻‍♀️🙍🏽‍♀️🙍🏻‍♂️🙎🏼 on Zoom tonight📱. We aren’t in lockdown here though, and are allowed to meet up, but have to wear masks where we can’t social distance. We had a scare a little while ago when a cleaner got Covid from a quarantine hotel. Have had no more community transmission though, so I’m sure at some stage those restrictions will be eased. This is the first time masks have been mandatory at shopping centres, businesses, public transport etc. There are no restrictions down the Gold Coast, except for social distancing. 

 

(10) I must say, I really am always grateful to have things to look forward to. It doesn’t have to be a holiday, it can be anything. A day trip out in nature 🌳🌳somewhere, exploring new places etc. Just the anticipation of having something fun to look forward to puts me in a good frame of mind. 
 

Well, got my Zoom meeting soon, hope everyone is coping as best they can🧡

[JackieDecides]

wow, you have some great plans: good for you! 

[Carmie]

5 hours ago, JackieDecides said:

wow, you have some great plans: good for you! 

Hi Jackie, 

 

Yes, I’m really looking forward to all my plans next week. I’m really grateful that I can get my husband out of his care place for four days, with the help of a support worker. The holiday should be good. Can’t wait to see all the animals and fall asleep to the sound of the ocean, so let’s hope Covid stays at bay. 
 

I was going to write a gratitude list for today, but my brain fog is just so severe. There’s always another day🧡

[Songbird]

Hi Carmie, good to see your updates.  I only pop in here now and then.

 

I've been to Currumbin, but it was many years ago.  And Seaworld many many years ago!  They're probably both a lot different now. 

[Carmie]

18 hours ago, Songbird said:

Hi Carmie, good to see your updates.  I only pop in here now and then.

 

I've been to Currumbin, but it was many years ago.  And Seaworld many many years ago!  They're probably both a lot different now. 

Hey there Songbird, 

 

How nice to hear from you. I’ve only just started interacting on this site again recently. I’ve had about a one year hiatus. 
 

Yes, I’m sure SeaWorld and Currumbin Wildlife Sanctuary have changed since you’ve been there. I haven’t been for years either, so I’m looking forward to going. I’m still struggling with trying to breathe, so that might put a little bit of a damper on things, but I’m still looking forward to my holiday next week. I just seem to be in a bit of a survival mode as the breathlessness is making me claustrophobic. 

 

Anyway, let’s hope Covid stays at bay, but we don’t have any community transmission at the moment. I see New Zealand is doing really well during this epidemic too. We’ve had a few lockdowns, but overall are doing okay at the moment. 
 

Well, my brain fog has been so severe, so I couldn’t write down a daily gratitude list. It’s not from withdrawals, but chronic fatigue syndrome. Today, let’s see if I can manage a list, here goes: 

 

(1) As usual, I have a smoothie at least once a day with berries and greens such as chlorella and spirulina. So yummy! I add a little stevia. 
 

(2) I’m going to watch something comedic on Netflix this afternoon. Need something to boost my spirits. 
 

(3) I’ve managed to do a little bit of packing for next week’s holiday. 
 

(4) I had a little bit of strength to do some housework. 
 

(5) Yesterday I lay in the sun on the balcony for about half an hour. It was lovely. I might go on my balcony again today if I feel like it. It’s about 3pm now. 
 

(4) My cat is so cute!! She’s staring at me now. 
 

(5) Visualising my holiday makes me smile. I love the atmosphere at Surfers Paradise. So many yummy restaurants and it’s so pretty at night time with pretty lights in some of the trees. I hope there are buskers on Cavill Ave as I love stopping and listening to them.

 

(6) As regards the holiday, we are in walking distance to the lunch cruise up and down the canals on the Friday. I’m looking forward to lunch time seafood buffet while enjoying the beautiful scenery. I just love being on boats. I can’t go whale watching though, as last time I went I threw up the whole time when the boat stopped and it was going up and down, up and down. I’m okay if the boats are moving. No more whale watching for me, I think I saw more of the toilets than the whales 😂

 

(7) One of my dear friends rang me, and it brightened my day. 
 

(8) I’m really feeling a bit down at the moment because of struggling to breathe, but I’ve got to find three more things to be grateful for, so here goes. As usual I really love the breeze of my fan. 
 

(9) I’m looking forward to dinner: fish and vegetables.

 

(10) And I must say again, I’m grateful for my comfy bed, in which I spend a lot of time in.

 

Well, I did it! I probably won’t do a daily gratitude list on here as my brain fog gets so bad. I’ll do one here and there, when I’m up to it. I’m feeling fairly contented due to looking forward to my holiday, but I’ve also shed a lot of tears as I’m struggling to breathe. One day at a time does it. Hoping to taper after my holiday again. 
 

Sending hugs🤗

[sunnysideup69]

Dropped by to wish you a fantastic holiday, @Carmie. Really hope it restores you and allows you to recuperate from illness. Big hugs and good wishes your way ❤️ 

[Carmie]

On 1/24/2021 at 8:33 PM, sunnysideup69 said:

Dropped by to wish you a fantastic holiday, @Carmie. Really hope it restores you and allows you to recuperate from illness. Big hugs and good wishes your way ❤️ 

Thank you so much Sunnysideup, 

 

I’m just taking an hour at a time, woke up this morning again struggling to breathe, so that freaked me out, but have settled now. I’m looking forward to my holiday despite all, as usual will just take an hour at a time and look forward to the positives. 
 

Speaking of positives, I’ll write a gratitude list. Was crying not long ago, but here goes:

 

(1) One of my beautiful friends SMS’d me just now with lovely messages and a song that warmed my heart. 
 

(2) Another friend popped around yesterday and we had a nice chill time, she’s taking care of my cat when I’m on holiday. 
 

(3) And then another friend rang me yesterday to see how I was doing, and her two beautiful young boys drew me pictures. She put them in my letter box. Soooooo cute. 
 

(4) Okay, so I guess with number one to three, I’m soooooo grateful for all my friends. I’m grateful I have so many people that care about me, that are there for me no matter what, that check in on me, that even if they don’t understand what I am going through they still don’t desert me. I feel unworthy, but grateful at the same time. I’ve shed many tears recently because of my lung issues, but my heart feels warm with all the care my friends give me. I well and truly am grateful.

 

(5) Im grateful that I have a holiday to look forward to. Can’t wait to be near the beach.

 

6) I am grateful that my husband has the most amazing support workers.

 

(7) As I was writing this, another friend rang. Awwwww! She wants me to go to Bundaberg with her next month. I have two friends that live in Bundaberg. Let’s see if I’m well enough. 
 

(8) I’ve been doing crosswords as a distraction this morning, love crosswords and word games.

 

(9) My cute cat, Heidi, is asleep on the bed next to me.

 

(10) Been watching K-dramas. Love Korean dramas, even if I have to read the subtitles😁

 

Take care🤗🤗

 

[direstraits]

just wanted to send some hugs to you from the other side of the world .🤗🤗🤗

wishing you better days ahead.❤️

[Carmie]

On 1/27/2021 at 8:51 AM, direstraits said:

just wanted to send some hugs to you from the other side of the world .🤗🤗🤗

wishing you better days ahead.❤️

Hi Direstraits, 

 

Thanks for the hugs from the other side of the world, right back at you🤗🤗🤗🤗. I got home from my holiday late yesterday and crashed today. It’s my bed time nearly as well. 

 

I’m dropping down from 4.80mg to 4.60mg tonight. It’s been four months since I’ve tapered. Here we go again!🙃🙃
 

Hope you’ve had a good day🧡

[direstraits]

Hope you enjoyed your holiday!

we just had big snowstorm here.❄️

 

good luck with your taper.😉

 

hugs,ds

[JackieDecides]

On 1/31/2021 at 2:24 AM, Carmie said:

I’m dropping down from 4.80mg to 4.60mg tonight. It’s been four months since I’ve tapered. Here we go again!🙃🙃

how are you doing? 

 

 

[Longroadhome]

@Carmie

How did your holiday go
And also your drop in meds? 

Hope both went well 👍

[Carmie]

On 2/3/2021 at 9:28 AM, direstraits said:

Hope you enjoyed your holiday!

we just had big snowstorm here.❄️

 

good luck with your taper.😉

 

hugs,ds

 

On 2/10/2021 at 12:50 PM, JackieDecides said:

how are you doing? 

 

 

 

19 hours ago, Longroadhome said:

@Carmie

How did your holiday go
And also your drop in meds? 

Hope both went well 👍

 

Hi there Direstraits, JackieDecides and LongestRoadHome,

 

Thank you all so much for thinking of me. Today is day eleven of my drop. My first week was uneventful, but I’m quite emotional today. I know it’s a little bit of WD, but my main problem is still my struggles with my lungs and breathlessness. It’s been over eleven weeks now, today is a bad day with shortness of breath, but I wasn’t too bad yesterday, so I visited my husband in his care home. The claustrophobic feeling of struggling to breathe is horrific!

 

I’m just taking a day at a time and hoping that one day the inflammation in my lungs will settle again. I’m taking so many supplements, and so far all of them seem to be okay as regards WD: serrapeptase, nattokinase, vitamin D, vitamin K, tocotrienols, Curcumin, Vitamin C. I also love spirulina and apple cider vinegar. I can’t take fish oils as they ramp up my WD, but I eat oily fish pretty much daily. I also found that magnesium supplements ramped up my WD so I’m thinking of getting some magnesium spray. I may have missed a couple of supplements here on my list as my brain fog is severe from the CFS. I want to add some more supplements for my lungs slowly, but I’ll have to see how they affect WD. Supplements are costing me a fortune and I’m on a disability pension!😁
 

The holiday was great, thanks for asking. I actually had two days where my breathlessness was bearable. My husband’s support worker, Joel, is such a lovely caring, humble person. My husband has lots of support workers, but I think Joel is the best one to go on holiday with as he’s very chill and go with the flow, like me. He’s also a musician and I loooooove music, I’ve been to soooo many concerts that I couldn’t count how many. My husband can play the drums, so they are the perfect fit. I can’t sing to save my life and I’m sure I killed Joel’s eardrums when singing in the car with the cranked up music 😂😂 Joel is quite shy actually and I haven’t heard him sing as yet, but he went to England for about two years and lived off his busking and getting gigs. I’m going to get him to sing for us one of these days🎤🎤🎼🎼😄

 

Now, to the holiday, as you asked. Hope this doesn’t bore you🤓. Actually, that emoji sums me up, as I wear glasses. Here we go, get your cup of coffee or tea and relax😂😂:

 

Wednesday morning Joel picked me up first, and then we got my husband. I was pleasantly surprised that the care workers where he lived had packed his bags. Yay! Then it was a nice little drive down to Labrador on the Gold Coast where an early lunch was had. I didn’t eat anything as I hate breakfast and I eat when I’m hungry which is usually after noon. There are always a million pelicans at Labrador, but it was the first time I’d been there when they were being fed. There are so many, though this time the people that feed them said that kids were being horrible to them the day before, thus there were only about a quarter of the amount of pelicans, which was still a lot. There’s this little lagoon there that’s blocked off by sand dunes and the water was soooo glorious and warm. I didn’t have my board shorts on at the time, but I got totally drenched in the flowy skirt I was wearing. I don’t understand when people get so stupid about being wet, I would jump into water fully clothed🌊🌊😆

 

Anyway, after we stayed there for ages, we went and booked into our accommodation after 2pm. It was a lovely place, I’d been there before with friends, only a block away from the beach.
 

That evening we went to the Outback Spectacular Show, which is a horse show. We had an amazing dinner there, and we all got our cowboy hats. Yeehaw!! It was so sunny and warm that day, but when we left Outback Spectacular at night time we had a total downpour, which I looooooooved!!! I love the rain💦💦💦 We got totally drenched walking to the car, I had an umbrella though and kept my husband dry. I love being drenched, so once he was in the car I just stayed outside in the rain. What’s better than frolicking in the rain on a lovely summer evening? Sometimes we have such a dry spell here in Queensland that I get so excited about rain. I was kicking the water in the carpark and I didn’t want to go back in the car. Yes, I know I’m crazy, I love nature and water. It lifts my spirits. 
 

That was day one of my holiday, but I feel like I’m rambling on, so I will stop now, I’m happy to tell you about the rest of it, but I don’t want to bore everyone 😂😂😂Let me know if you want further instalments 😆

 

Sending big hugs to you all🤗🤗

 

[Carmie]

P.S. I really have to add this for today if anyone needs a laugh. I was in hysterics😹😹😹 I’m sure most people have seen it already, it came out yesterday. Just go to YouTube and type in:  Lawyer couldn’t turn off cat filter in Zoom. I haven’t laughed that hard in ages. “I’m not a cat.”🤣🤣🤣🤣🤣

[Longroadhome]

1 hour ago, Carmie said:

 

 

 

Hi there Direstraits, JackieDecides and LongestRoadHome,

 

Thank you all so much for thinking of me. Today is day eleven of my drop. My first week was uneventful, but I’m quite emotional today. I know it’s a little bit of WD, but my main problem is still my struggles with my lungs and breathlessness. It’s been over eleven weeks now, today is a bad day with shortness of breath, but I wasn’t too bad yesterday, so I visited my husband in his care home. The claustrophobic feeling of struggling to breathe is horrific!

 

I’m just taking a day at a time and hoping that one day the inflammation in my lungs will settle again. I’m taking so many supplements, and so far all of them seem to be okay as regards WD: serrapeptase, nattokinase, vitamin D, vitamin K, tocotrienols, Curcumin, Vitamin C. I also love spirulina and apple cider vinegar. I can’t take fish oils as they ramp up my WD, but I eat oily fish pretty much daily. I also found that magnesium supplements ramped up my WD so I’m thinking of getting some magnesium spray. I may have missed a couple of supplements here on my list as my brain fog is severe from the CFS. I want to add some more supplements for my lungs slowly, but I’ll have to see how they affect WD. Supplements are costing me a fortune and I’m on a disability pension!😁
 

The holiday was great, thanks for asking. I actually had two days where my breathlessness was bearable. My husband’s support worker, Joel, is such a lovely caring, humble person. My husband has lots of support workers, but I think Joel is the best one to go on holiday with as he’s very chill and go with the flow, like me. He’s also a musician and I loooooove music, I’ve been to soooo many concerts that I couldn’t count how many. My husband can play the drums, so they are the perfect fit. I can’t sing to save my life and I’m sure I killed Joel’s eardrums when singing in the car with the cranked up music 😂😂 Joel is quite shy actually and I haven’t heard him sing as yet, but he went to England for about two years and lived off his busking and getting gigs. I’m going to get him to sing for us one of these days🎤🎤🎼🎼😄

 

Now, to the holiday, as you asked. Hope this doesn’t bore you🤓. Actually, that emoji sums me up, as I wear glasses. Here we go, get your cup of coffee or tea and relax😂😂:

 

Wednesday morning Joel picked me up first, and then we got my husband. I was pleasantly surprised that the care workers where he lived had packed his bags. Yay! Then it was a nice little drive down to Labrador on the Gold Coast where an early lunch was had. I didn’t eat anything as I hate breakfast and I eat when I’m hungry which is usually after noon. There are always a million pelicans at Labrador, but it was the first time I’d been there when they were being fed. There are so many, though this time the people that feed them said that kids were being horrible to them the day before, thus there were only about a quarter of the amount of pelicans, which was still a lot. There’s this little lagoon there that’s blocked off by sand dunes and the water was soooo glorious and warm. I didn’t have my board shorts on at the time, but I got totally drenched in the flowy skirt I was wearing. I don’t understand when people get so stupid about being wet, I would jump into water fully clothed🌊🌊😆

 

Anyway, after we stayed there for ages, we went and booked into our accommodation after 2pm. It was a lovely place, I’d been there before with friends, only a block away from the beach.
 

That evening we went to the Outback Spectacular Show, which is a horse show. We had an amazing dinner there, and we all got our cowboy hats. Yeehaw!! It was so sunny and warm that day, but when we left Outback Spectacular at night time we had a total downpour, which I looooooooved!!! I love the rain💦💦💦 We got totally drenched walking to the car, I had an umbrella though and kept my husband dry. I love being drenched, so once he was in the car I just stayed outside in the rain. What’s better than frolicking in the rain on a lovely summer evening? Sometimes we have such a dry spell here in Queensland that I get so excited about rain. I was kicking the water in the carpark and I didn’t want to go back in the car. Yes, I know I’m crazy, I love nature and water. It lifts my spirits. 
 

That was day one of my holiday, but I feel like I’m rambling on, so I will stop now, I’m happy to tell you about the rest of it, but I don’t want to bore everyone 😂😂😂Let me know if you want further instalments 😆

 

Sending big hugs to you all🤗🤗

 

Sounds amazing !

And just what the doctor ordered  

further instalments requested  please 

[Carmie]

On 2/11/2021 at 4:28 PM, Longroadhome said:

Sounds amazing !

And just what the doctor ordered  

further instalments requested  please 

Hey there Longroadhome, 

Hope you’re doing okay. So today is day 12 since my last drop. I dropped by 4.2% with this latest drop, let’s see how I go down the track, but so far not too bad. My drop before that was 4.1%. I held for almost 18 weeks though I think, which is about 4 1/2 months so my brain could really stabilise. I was also going through lots of other stressful things, so decided to have a long hold. I go with what my body tells me. I’m not sure how this latest drop will go as it is a little bit higher percentage wise. I’ll see how I do, and then decide whether to go down in percentage again the next drop.
 

Okay, here’s some further instalments of my holiday, as requested😎: 

 

So after having a delightful day on Wednesday, we are now onto Thursday. I struggle with memory problems, due to my illness, but I’ll try to recollect what I can. 

 

In the morning I went for a walk to the beach, and sat there for a while. I was struggling to breathe, which put a damper on things, but that eased a little later on. I really, really, really would love to live near the beach. When I got back home I felt closed in as the open ocean and sea air is what makes my heart sing. 
 

So Thursday we had tickets to Seaworld, I really wanted to see the colourful jellyfish. They put different lights on them n they were so pretty😍. They move so elegantly, they are so graceful, I was riveted!!  The other two things I absolutely loved was petting the stingrays. Some of them are in this shallow pool, and they looooove being petted. They were all on the outside of the pool where the people were, none of them were in the middle of the pool. This one particular stingray kept coming back to us, so adorable! 
 

My husband’s care worker was scared of petting the stingray, but he warmed up in the end. I think I’m going to turn him into a wildlife warrior as yet.😂
 

The other thing I really loved was just sitting under the aquarium and watching the fish, including sharks and stingrays swimming. I could have stayed there all day. How relaxing is it watching fish swim. Just glorious!!

 

Anyway, after enjoying an exquisite time with the sea life, we went back to the hotel and crashed for the afternoon. In the evening though it was time to hit one of the millions of restaurants down at Surfers Paradise. There were way too many to choose from, but we were trying to find one with live music. We found a great one with a terrific singer and the most amazing chicken wings. I want to go back!!!

 

Okay, now for Friday: We just chilled in the morning. My husband and his care worker went out for breakfast, I don’t eat breakfast so I just went exploring. Found some nice little items for my home, my place is decorated in a beach theme. Loooooove the beach🌊🌊🌊🌊. At lunch time we went on a seafood lunch cruise. I was in my element, cruising in the water and eating prawns. Yummy!!🍤🍤 I actually managed to get my feet in the water from the boat and splash them around. I didn’t want to leave.

 

After we left the cruise I inquired about jet skis, as I wanted my husband to go on them with his care worker. My husband has always wanted to go on one and Joel was more than happy to do so too. Joel steered it and my husband was on the back. They had a jet ski instructor in front of them on a jet ski and also one behind because if my husband fell in the water he would have needed a lot of help. So Friday was a day of fun on the water. 
 

In the afternoon we all had a rest, then when evening hit it was time to hit the town again. There are markets on the beachfront every Friday night, though I did buy anything, except a flashing light balloon. Yes, I’m a young kid at heart✨✨🎈✨✨✨

 

We then sat and watched a busker until 11pm. After that we started heading towards our hotel, but we saw live music being played somewhere so we couldn’t help ourselves. We didn’t end up getting home until 2pm, although I’m thinking with the CFS, I will probably end up being in bed the following week. Yep, pretty much what happened. 
 

But there’s more: On the Saturday, our last day of our holiday, we went to the Currumbin Wildlife Sanctuary. I didn’t have much strength left, but there was this little train that takes you around the Zoo. I made friends with a really tame emu, he was adorable. Peter’s care giver, Joel, was scared of him at first and I couldn’t understand why until later. He was telling me he had an experience with a cassowary when he was up north in the Daintree rainforest. I didn’t really know much about them, though there was one in this wildlife park. I googled them and they are like the raptors in Jurassic Park😳. So, because of that he was scared of big birds. I’m not scared of emus, but I tell you what, I’d never want to come across a cassowary in the wild, one of the most dangerous birds. 
 

Anyway, that’s a little bit of the story of my holiday. Today, I spent the day with a friend of mine, who came to visit. So exhausted now, going to crash. I’m amazed that my brain foggy brain allowed me to write this much. 
 

Sending hugs to you🤗🤗🤗

Edited February 12, 2021 by Carmie

[JackieDecides]

On 2/10/2021 at 9:18 PM, Carmie said:

P.S. I really have to add this for today if anyone needs a laugh. I was in hysterics😹😹😹 I’m sure most people have seen it already, it came out yesterday. Just go to YouTube and type in:  Lawyer couldn’t turn off cat filter in Zoom. I haven’t laughed that hard in ages. “I’m not a cat.”🤣🤣🤣🤣🤣

 

 

that was so funny, I loved it! 

 

Carmie, I am so sad you have such severe health issues but at least you have a wonderful life ANYWAY. you really inspire me!! 

[Longroadhome]

Hi @Carmie

 

well done on your most recent drop hope it’s continuing to go well for you . Don’t know about you but It makes me feel so good tapering and scraping away the destruction Paxil has done to my system. Can’t wait to be rid of it and am looking to the future SSRI free which will be the first time in over 17 years by the time I get to zero. 
 

Hope today finds you feeling better

Thank you for your holiday write up it makes very interesting reading . In 2018 my family and I went on holiday to Australia to the Northern territories landing in Darwin doing the national parks and ended up in the jungles by the barrier reef . We had the most fantastic adventure. 

so reading through your holiday write up brought back many wonderful memories . 
 

I can see why you would like to live by the sea near a beach 🏖 the sea air,  listening to the waves and just being  among people who are there to have a good time is very therapeutic. 
 

also sitting and watching the fish swim around and do their thing is so relaxing. 
 

I completely understand Joel’s  reluctance regarding the Cassawary. 
we seen these in the jungles around Queensland. They are huge and yes very aggressive to be avoided at all costs. 
 

sounds like you had a wonderful time and just the kind of things I like to do. A sight seeing visit in the morning chill of an afternoon and look forward to a nice meal on the evening . 
so special to get to do these things with your husband. 😊
 

 

[direstraits]

sounds like a wonderful time...so happy for you! really enjoyed reading about your adventures.😊

 

I love the beach too,my favorite place to be.🌊

 

hope you get some relief from the breathing problems.❤️

 

yeah,the cat thing was a riot!😹

 

sending big hugs,ds🤗🤗🤗

 

 

 

[hayduke]

Loved reading about your holidays, Carmie :-)

 

The stingrays are very mellow, I grew up swimming with them. Sometimes they'd be burrowed just under the sand and they'd wake up, wriggle and take off very quickly if you found one with your foot in the bay. Always good for a giggle!

 

I've not met a cassowary in the wild - if I ever I hope it's in a good mood. A cheeky emu did pinch my ice cream at the zoo once though.

 

I hope you can get a place by the beach before long

[Rabe]

Hi Carmie!  I saw that cat lawyer post...I laughed so hard as well...I'm not a cat.  REally????

 

WOW!  You have had such a lovely vacation!!  Im so excited for you Carmie!  Bet it still feels wonderful...and so many wonderful memories!!!  Well deserved I must say!!

 

Thank you for stopping by and saying hi!  I am continuing to taper...trying to be pretty steady with it though as I go down the drops get bigger and it is more challenging as it seems to affect my Clonazepam as well.  Not sure why that is.  Well it seems to affect everything and I react more which hardly seems possible as I react to so much as it is.  Trying to deal with the SIBO and gut issues and eat and stay as healthy as possible in these crazy times.

 

Love and hugs to you!  Gosh your trip sounds so lovely!!  So many great memories to cherish!!💜

[Carmie]

On 2/13/2021 at 2:19 AM, JackieDecides said:

 

 

that was so funny, I loved it! 

 

Carmie, I am so sad you have such severe health issues but at least you have a wonderful life ANYWAY. you really inspire me!! 

 

On 2/15/2021 at 4:46 AM, Longroadhome said:

Hi @Carmie

 

well done on your most recent drop hope it’s continuing to go well for you . Don’t know about you but It makes me feel so good tapering and scraping away the destruction Paxil has done to my system. Can’t wait to be rid of it and am looking to the future SSRI free which will be the first time in over 17 years by the time I get to zero. 
 

Hope today finds you feeling better

Thank you for your holiday write up it makes very interesting reading . In 2018 my family and I went on holiday to Australia to the Northern territories landing in Darwin doing the national parks and ended up in the jungles by the barrier reef . We had the most fantastic adventure. 

so reading through your holiday write up brought back many wonderful memories . 
 

I can see why you would like to live by the sea near a beach 🏖 the sea air,  listening to the waves and just being  among people who are there to have a good time is very therapeutic. 
 

also sitting and watching the fish swim around and do their thing is so relaxing. 
 

I completely understand Joel’s  reluctance regarding the Cassawary. 
we seen these in the jungles around Queensland. They are huge and yes very aggressive to be avoided at all costs. 
 

sounds like you had a wonderful time and just the kind of things I like to do. A sight seeing visit in the morning chill of an afternoon and look forward to a nice meal on the evening . 
so special to get to do these things with your husband. 😊
 

 

 

On 2/22/2021 at 9:54 AM, hayduke said:

Loved reading about your holidays, Carmie 🙂

 

The stingrays are very mellow, I grew up swimming with them. Sometimes they'd be burrowed just under the sand and they'd wake up, wriggle and take off very quickly if you found one with your foot in the bay. Always good for a giggle!

 

I've not met a cassowary in the wild - if I ever I hope it's in a good mood. A cheeky emu did pinch my ice cream at the zoo once though.

 

I hope you can get a place by the beach before long

 

On 2/22/2021 at 2:55 PM, Rabe said:

Hi Carmie!  I saw that cat lawyer post...I laughed so hard as well...I'm not a cat.  REally????

 

WOW!  You have had such a lovely vacation!!  Im so excited for you Carmie!  Bet it still feels wonderful...and so many wonderful memories!!!  Well deserved I must say!!

 

Thank you for stopping by and saying hi!  I am continuing to taper...trying to be pretty steady with it though as I go down the drops get bigger and it is more challenging as it seems to affect my Clonazepam as well.  Not sure why that is.  Well it seems to affect everything and I react more which hardly seems possible as I react to so much as it is.  Trying to deal with the SIBO and gut issues and eat and stay as healthy as possible in these crazy times.

 

Love and hugs to you!  Gosh your trip sounds so lovely!!  So many great memories to cherish!!💜

 

Hi JackieDecides, Longroadhome, direstraits, Hayduke and Rabe, 

 

Thanks so much for popping over my end of the woods, it’s much appreciated. I haven’t been doing too great with my breathing. I made an appointment with a natural therapist ages ago, but it’s still another eleven days until I can see him. He’s a really good iridologist and is also great with acupuncture and other things, but he’s always hard to get into as he’s so popular. I hope he can help. 
 

I was given a steroidal inhaler from my doctor recently, but I’m too scared to use it and there’s no guarantee it will work. I’ve had bad reactions to different medications and I’ve ended up in hospital, so I don’t want to risk that as I won’t be able to water titrate the Seroquel if I’m in hospital. I definitely DO NOT want akathisia again!! Also, steroidal inhalers and steroids can cause withdrawals as well. Ventolin doesn’t work at all. Let’s see how I go with the natural therapist. 
 

Jackie, direstraits and Rabe, yes I thought that video was hilarious too, I watched it so many times and I still laughed every time. The lawyer was serious about going ahead despite the filter: “ I’m not a cat.” 😂😂😂

 

Longroadhome, I’m glad you got to go on a holiday to Australia. I love living here. I haven’t been to the Northern Territory though. 

 

Hayduke, how cool swimming with stingrays. They’re so beautiful. You made me laugh with your quote: “ I’ve not met a cassowary in the wild-if I ever, I hope it’s in a good mood.” 😆 You would hope so, they are scary things. They’re like those raptors in Jurassic Park when the kids were hiding!!😳 They’ve killed a couple of people. I loooove emus though, how cute the emu stole your icecream, did you buy another one?🍦🍦

 

Well, it’s three weeks and two days since my last drop and it’s been bearable so far, though I’m quite on edge a lot of the time. Struggling to breathe isn’t helping with that though, so I guess it’s a combination of the two things. I’ve been in tears quite a bit. 
 

I’m not in a big socialising mood lately because of my breathing, but my friends are continually contacting me, which is heartwarming. Last week one of my friends brought me around a big bunch of yellow flowers. Awww!! I loooove yellow flowers, I don’t care what kind as long as they’re yellow.🌼🌼🌼🌼🌼🌼🌼🌼

 

I’ve still been going out with my husband and his support workers, it’s a good distraction from my breathlessness. Yesterday we went to Movie World down the Gold Coast. I got yearly tickets that covers four different parks. Tweety Bird had some moves to the music🐤💃, Go Tweety!!! It was a really warm day, it was about 34 degrees Celsius, so those guys or girls that put on the looney tune character costumes must have really been sweating🥵

 

After Movie World we popped into my sister’s place and played with her dog Rusty. My sister was at work, but my brother in law was home. Rusty can play catch with the ball 24/7🎾🎾🐶 He never wants to stop, he just continually stares at the ball, until you throw it. A little OCD, I think😁

 

Anyway, after that we went and chilled down the beach at Broadwater. It was lovely there, we were under a big tree. I loooooooooooooove the beach🌊🌊🌊🌊🌊🌊

 

Last week we took my husband to the Q1 at Surfers Paradise. It’s so cool up there, the view is spectacular. I’m getting yearly tickets too. Technically, it’s the highest building in Australia, as it also has this antenna looking thing at the top, but the highest building in Australia which stops at the roof is in Melbourne. That being said, I just love looking down from the Q1, the view is spectacular!!! It’s overlooking the beach, and you can walk around the viewing floor by 360 degrees. I just sat there looking down at the beach, I didn’t want to leave. If you’re scared of heights though, it probably not for you.

 

Another day we took my husband to a lake with ducks🦆🦆🦆🦆 and a million turtles🐢🐢🐢🐢🐢. Also saw a swan🦢. The swan was so friendly, it came right up to us. The turtles were quite big, and I was amazed how many there were all together. I just love being anywhere near water.
 

 Anyway, lately I just seem to be keeping my head above water, hopefully my lung flare up will eventually die down. It’s been thirteen weeks😢

 

Sending big hugs to all of you🤗🤗🤗🤗🤗

 

P.S. @direstraits I just realised I didn’t use your quote, I’m so braindead. I thought I better edit and tag you. I hope you e managed to get to the beach too, it’s our happy place, isn’t it?🌊🌊🧡

 

Edited February 23, 2021 by Carmie
Forgot to quote direstraits🤪

[direstraits]

On 2/23/2021 at 4:43 AM, Carmie said:

 

 

 

 

Hi JackieDecides, Longroadhome, direstraits, Hayduke and Rabe, 

 

Thanks so much for popping over my end of the woods, it’s much appreciated. I haven’t been doing too great with my breathing. I made an appointment with a natural therapist ages ago, but it’s still another eleven days until I can see him. He’s a really good iridologist and is also great with acupuncture and other things, but he’s always hard to get into as he’s so popular. I hope he can help. 
 

I was given a steroidal inhaler from my doctor recently, but I’m too scared to use it and there’s no guarantee it will work. I’ve had bad reactions to different medications and I’ve ended up in hospital, so I don’t want to risk that as I won’t be able to water titrate the Seroquel if I’m in hospital. I definitely DO NOT want akathisia again!! Also, steroidal inhalers and steroids can cause withdrawals as well. Ventolin doesn’t work at all. Let’s see how I go with the natural therapist. 
 

Jackie, direstraits and Rabe, yes I thought that video was hilarious too, I watched it so many times and I still laughed every time. The lawyer was serious about going ahead despite the filter: “ I’m not a cat.” 😂😂😂

 

Longroadhome, I’m glad you got to go on a holiday to Australia. I love living here. I haven’t been to the Northern Territory though. 

 

Hayduke, how cool swimming with stingrays. They’re so beautiful. You made me laugh with your quote: “ I’ve not met a cassowary in the wild-if I ever, I hope it’s in a good mood.” 😆 You would hope so, they are scary things. They’re like those raptors in Jurassic Park when the kids were hiding!!😳 They’ve killed a couple of people. I loooove emus though, how cute the emu stole your icecream, did you buy another one?🍦🍦

 

Well, it’s three weeks and two days since my last drop and it’s been bearable so far, though I’m quite on edge a lot of the time. Struggling to breathe isn’t helping with that though, so I guess it’s a combination of the two things. I’ve been in tears quite a bit. 
 

I’m not in a big socialising mood lately because of my breathing, but my friends are continually contacting me, which is heartwarming. Last week one of my friends brought me around a big bunch of yellow flowers. Awww!! I loooove yellow flowers, I don’t care what kind as long as they’re yellow.🌼🌼🌼🌼🌼🌼🌼🌼

 

I’ve still been going out with my husband and his support workers, it’s a good distraction from my breathlessness. Yesterday we went to Movie World down the Gold Coast. I got yearly tickets that covers four different parks. Tweety Bird had some moves to the music🐤💃, Go Tweety!!! It was a really warm day, it was about 34 degrees Celsius, so those guys or girls that put on the looney tune character costumes must have really been sweating🥵

 

After Movie World we popped into my sister’s place and played with her dog Rusty. My sister was at work, but my brother in law was home. Rusty can play catch with the ball 24/7🎾🎾🐶 He never wants to stop, he just continually stares at the ball, until you throw it. A little OCD, I think😁

 

Anyway, after that we went and chilled down the beach at Broadwater. It was lovely there, we were under a big tree. I loooooooooooooove the beach🌊🌊🌊🌊🌊🌊

 

Last week we took my husband to the Q1 at Surfers Paradise. It’s so cool up there, the view is spectacular. I’m getting yearly tickets too. Technically, it’s the highest building in Australia, as it also has this antenna looking thing at the top, but the highest building in Australia which stops at the roof is in Melbourne. That being said, I just love looking down from the Q1, the view is spectacular!!! It’s overlooking the beach, and you can walk around the viewing floor by 360 degrees. I just sat there looking down at the beach, I didn’t want to leave. If you’re scared of heights though, it probably not for you.

 

Another day we took my husband to a lake with ducks🦆🦆🦆🦆 and a million turtles🐢🐢🐢🐢🐢. Also saw a swan🦢. The swan was so friendly, it came right up to us. The turtles were quite big, and I was amazed how many there were all together. I just love being anywhere near water.
 

 Anyway, lately I just seem to be keeping my head above water, hopefully my lung flare up will eventually die down. It’s been thirteen weeks😢

 

Sending big hugs to all of you🤗🤗🤗🤗🤗

 

P.S. @direstraits I just realised I didn’t use your quote, I’m so braindead. I thought I better edit and tag you. I hope you e managed to get to the beach too, it’s our happy place, isn’t it?🌊🌊🧡

 

no worries, Carmie 😉

that building sounds cool,Australia sounds so wonderful.

been really cold and snowy here,warmer today,gotta get outside!😎

looking forward to the beach when it's warmer..yes it is our happy place.🌊❤️

take care of yourself and hope you feel better soon.

big hugs,ds 🤗🤗🤗🤗

[Carmie]

On 2/25/2021 at 5:52 AM, direstraits said:

no worries, Carmie 😉

that building sounds cool,Australia sounds so wonderful.

been really cold and snowy here,warmer today,gotta get outside!😎

looking forward to the beach when it's warmer..yes it is our happy place.🌊❤️

take care of yourself and hope you feel better soon.

big hugs,ds 🤗🤗🤗🤗

Hi Direstraits,

 

Yes, the beach is definitely a place that inspires and moves me. I really am happiest when I am at the beach. On Monday my husband has a community access support worker for eight hours, so we will definitely go to the beach somewhere. It’s still really warm in Queensland here. Autumn starts on the first of March, but it’s 32 degrees Celsius today. I’m sorry you’ve got cold weather at the moment where you are. 
 

My lungs are still inflamed. It’s been over three months, hopefully they will settle soon. 
 

I thought while I’m here today, I’ll write a gratitude list too, so here goes:

 

(1) I had a nice time at Movie World🎥 down the Gold Coast this week on Monday. It was really hot though, so I’ll go again on a cooler day. It was 34 degrees Celsius 🥵🥵. My husband’s support worker went on two of the rides, the log ride and one of the roller coasters🎢🎢🎢.

 

I was going to go on the roller coaster, but there was a sign that said if you’ve had broken bones it’s best not to. Later on I spoke to someone though, and they said it would be okay, since it was five years ago. I got hit by a car and spent three months in hospital. I did some damage😬. I have an annual pass to Movie World, so I’ll be back and hitting the big rollercoaster. I did go on the rollercoaster for kids, the G forces were just as quick, the drops weren’t as high though.  There’s another roller coaster though that’s extremely crazy, and the support worker was in no way going on that.

 

(2) I’m grateful for annual passes to different places😁

 

(3) I’m grateful that Queensland has been doing okay overall as regards the Corona virus. We’ve been in a couple of lockdowns. In the beginning I think I was in lockdown for over three months. At the moment, life is fairly normal, except we’ve been asked to social distance. We have no community transmission. I know that can change in the blink of an eye, but I’m grateful I live here. 
 

(4) I’m lying on my comfy lounge, looking at all my plants🌿🌿🌿🌿🌿🌿🌿🌿

 

(5) One of my friends is going to book a concert for next year. Concerts are coming back. Yay!!!! Can’t wait to go🥁🎹🎷🎻🪕🎸🪗🎺 It’s Belinda Carlisle, I’ve seen her before. It was a great night. 
 

(6) Another friend wants me to go to Bundaberg with her next month. She’s staying with one of her friends up there. I have two friends there too, I’ll be staying with one. Loooooove road trips🚗. Also love Bundaberg, it’s like a big country town with a beach nearby.🌊🌊🌊🌊

 

(7) Bought my husband a remote control car, and he was so happy with it. I’ll get him a remote control helicopter next. 
 

(8) Went for lunch with my husband at a lovely place that makes the most amazing gluten free steak sandwiches 😋😋😋😋😋

 

(9) Stayed overnight one night at my husband’s care place this week, which was nice as I didn’t have to rush home after taking him out for the day. There were restrictions before because of the virus, but for now we have 24/7 access again. There are a million forms to fill out every time you go in and leave though. 

 

(10) I’m watching The Mandalorian at the moment. Good ol’ streaming channels. I went to the movies the other day too and watched Pelican Bloom. Loved it. True story, I remember seeing the interview of the lady the story was based on. Very sad, but truly inspirational at the same time. 
 

Well, I think my brain has left planet earth now, so I’ll say bye. I’m too brain dead to proof read, so if something I wrote doesn’t make sense, so be it🤪😁

 

Sending hugs🤗🤗

[Carmie]

P.S. Just one documentation for today: It’s a month tomorrow since my last drop from 4.80mg to 4.60mg. The drop was 4.2%. The drop before that was about 4%. 
 

So far it’s not going too bad, although I’m quite on edge. That happens with every taper.

 

I go according to how my body feels, so I’ll see how I go with this drop. I’m going to be holding for three months I think. If I’m okay at that stage I’ll try and drop by another 0.20mg, but this time it will be 4.4%. Im still deciding what to do. My body will tell me. 
 

If I do end up doing a 4.4% drop and it goes badly, I’ll just lower the percentage the following drop. Not sure what I’m doing yet.
 

I’m just taking a day at a time. Also, I find that the holds ARE JUST AS IMPORTANT as the drops. When I’ve tried to go quicker I pay for it dearly, and then I end up having to hold even longer, so slow and steady does it. 

[Carmie]

Just documenting: Going through waves. I’m so emotional, and seem to be teary at the drop of a hat. These meds certainly mess with your emotions. I’m dealing with lots of other health problems etc too, so that’s not helping either. 
 

It’s really weird, I feel like crying, but at the same time I feel anhedonic and can’t really feel real joy in anything. I’m numb most of the time. This has a lot to do with the CFS as well, I gather. I live in such severe brain fog from it, that I don’t really feel like I’m here. Everything is surreal all the time. 

 

I make myself go out and do things for the distraction. I was so on edge today, I just had to get out a bit. I went and had some lunch at a shopping centre, yummy Penang chicken curry. I sat there and read the paper, and then passed it on to one of the other diners. 
 

I really don’t even feel like I’m on planet earth.

 

Yesterday’s distraction was going up the Coast to the beach with my husband and his support worker. Then we went to Sea Life, I can just sit and watch aquariums all day long. I need a big one at home that I can just stare at to calm me down. I’m not well enough to take care of a fish tank though, it takes a lot of work. 
 

I can barely move at the moment, so I’ll be lying down for the rest of the day. One hour at a time does it!

 

Hope everyone is coping okay🤗🤗🤗

[hayduke]

Glad you've been getting out and about and seeing cool places, Carmie.

 

I know those teary spells so well.  When those hit, I like to put the right music on and cry all day if I feel like it.  It feels good to let it out.

[JackieDecides]

On 3/1/2021 at 7:36 PM, Carmie said:

I can barely move at the moment, so I’ll be lying down for the rest of the day.

 

I'm sorry, Carmie

[Miracle123]

Hi Carmie,

How are you my dear? Sorry to hear that u are still in waves which is really not so easy for you. Luckily u are so strong in mentality and postive person.

Im really seldom coming in nowaday because really busy with work until im forgotten eveything. Times flies so fast and my waves not really noticed anymore. Im so blessing and appreciated it . 

Really hope you one day  will coming out in this recovery road and healing same as me. Take good care and sending my warmest regards and hug from me. 

Always remember and thinking of you❤️

[Rabe]

Hi Carmie,

Im so sorry to hear that you are struggling.  So hoping that, like the aquariums you love, you will soon be without this wave and finding more of that joy and peace that you find in them.

Love and hugs to you Carmie!!💜

 

[Rosetta]

How have you been, Carmie?

[Rosetta]

Carmie,

 

I’m thinking of you.  
 

Rosetta

[Carmie]

On 3/2/2021 at 2:05 PM, hayduke said:

Glad you've been getting out and about and seeing cool places, Carmie.

 

I know those teary spells so well.  When those hit, I like to put the right music on and cry all day if I feel like it.  It feels good to let it out.

 

On 3/6/2021 at 3:14 PM, JackieDecides said:

 

I'm sorry, Carmie

 

On 3/8/2021 at 11:21 PM, Miracle123 said:

Hi Carmie,

How are you my dear? Sorry to hear that u are still in waves which is really not so easy for you. Luckily u are so strong in mentality and postive person.

Im really seldom coming in nowaday because really busy with work until im forgotten eveything. Times flies so fast and my waves not really noticed anymore. Im so blessing and appreciated it . 

Really hope you one day  will coming out in this recovery road and healing same as me. Take good care and sending my warmest regards and hug from me. 

Always remember and thinking of you❤️

 

On 5/4/2021 at 2:45 PM, Rosetta said:

How have you been, Carmie?

Hi Hayduke, Miracle, Rabe, Jackie and Rosetta, 

 

Thanks for dropping by, how are you all doing?

 

I haven’t been doing too good, constantly struggling with breathing, I found out that my immune system is attacking my lungs. This latest flare up has lasted over half a year. It feels so claustrophobic all the time. 
 

I managed to do another taper down to 4.40mg. It’s just over five weeks since I did that. I’m holding for three months, I held for three months on 4.60mg too. Am going through waves at the moment, but am more concerned about my breathing.
 

I’ve gone on the autoimmune protocol diet. I only eat vegetables ( not nightshades), some fruit, grass fed meat and seafood. I’ve cut out all grains, dairy, sugar( a bit of honey and maple syrup allowed), legumes, nuts, seeds etc etc. I actually love the foods I’m eating, so it’s not hard to stick to. I got some yummy coconut yogurt yesterday for the first time, I just started making kombucha again, it will take a while to ferment. 
 

I’ve had a day here and there where my breathlessness was bearable, but it doesn’t last. This flare up doesn’t seem to want to settle. I’ve really been struggling. Nevertheless, I think I might write down a gratitude list, here goes: 

 

1) Went for a day down to Byron Bay last week with my husband and his support worker. Byron Bay is such a lovely place. 
2) Watched the sunset from up the hill where the lighthouse is at Byron Bay. Gorgeous!

3) Watched the eclipse from my balcony the other day. 
4) Got my cosy heater on at the moment. 
5) Went for a holiday to the Gold Coast for three days with my husband and his support worker about a month or so ago. My breathing was bearable at the time.

6) On the holiday we went up the Q1, the tallest building. We’ve got annual passes, and it’s such a great view up there. I’d never been there at nighttime, the lights were gorgeous. You can also see the beach as there are lights along the esplanade. 
7) Have been able to take lots of photos on holiday and other outings. Love taking photos.

8) I have amazing friends!

9) My cat.

10) I’m grateful I have food and have a roof over my head. 
 

Well, I did it. I managed to get to ten. 
 

Sending big hugs to everyone🤗🤗🤗

On 3/15/2021 at 7:04 AM, Rabe said:

Hi Carmie,

Im so sorry to hear that you are struggling.  So hoping that, like the aquariums you love, you will soon be without this wave and finding more of that joy and peace that you find in them.

Love and hugs to you Carmie!!💜

 

 

 

[Kostas]

You are an inspiration dear Carmie!

God bless you...

[Miracle123]

Hi carmie, so sorry to hear that but you are such a strong in mentality and very positive person. Not easy going thru this process and take long term to run. Hope everything will be better and improve. 

God bless u my dear.🤗❤️

[Rosetta]

Hi Carmie,

I am thinking of you.  Your gratitude lists are awesome.  I’m sorry you are feeling bad at the moment.  The problem with your lungs sounds serious?  I hope it’s just a a WD symptom mimicking something else.  I’m really glad you had some nice trips with your husband.

 

Rosetta