Carmie: accidently doubling up on Seroquel one day while tapering

[Carmie]

Just documenting: today is day 22 since my drop from 5.80mg to 5.60mg. Been going through lots of waves for more than a week. My brain is in lala land too, struggling to think as my brainfog is so thick, but that’s mainly due to my illness.
 

I’m a major music freak but I’ve gone through a stage where I hardly listened to music at all. Used to go to millions of concerts, haven’t been to one in ages. Just listening to music now. 
 

Going to write another gratitude list:

1.) Am loving the sound of rain outside.

2.) Am grateful for the fan and airconditioning in my bedroom.

3.) I love turning on my fairy lights in the bedroom in the morning. So colourful.

4.) I love taking photos, but have been too sick and have too much on my plate lately to do much photography. The anticipation of being able to do so again makes me happy.

5.) Love libraries. Free books, free dvds and a relaxing atmosphere.

6.) Love books. Got a few from ebay recently, Due to brainfog can only read a little at a time, but books are great!

7.) My friends.

8.) Nature. I want to get some pot plants to put on the balcony. I’ve got two small ficus trees out there, but that’s it. I want to get some herbs too and put them on the window sill.

9.) This is a fun one.😜 Direct debit. Yesterday I got my bank to direct debit my rent into the landlord’s account. Why, oh, why didn’t I think of that before!! I always went into the bank to pay it.

10.) Following on from the last one, simplify, simplify, simplify my life as much as possible. 
 

My word for this year is SIMPLIFY!! There are so many things we can do in our lives that can make things simpler. We just have to put our thinking caps on.

 

Hope you’re all coping as best as you can🧡

[Giulietta]

Hello Carmie,

 

Thank you for your message on my thread - which I will respond to. You are so smart and thoughtful. 🙂

 

Sorry about your wave and hope that it does not hang around for long. Good news is you continue to make progress. It is a good feeling to get closer to 0 - molecule by molecule it seems 😂.

 

12 hours ago, Carmie said:

I’m a major music freak but I’ve gone through a stage where I hardly listened to music at all. Used to go to millions of concerts, haven’t been to one in ages. Just listening to music now. 

 

You will get over this. 😉  I did too for a brief while - and my passion for it came back. If you enjoy classical piano, you mentioned you enjoy all types of music,  Valentina Lisita on Youtube is amazing to watch and hear. She plays on a Bosendoerfer piano. Beautiful.  https://www.youtube.com/channel/UC6UbiyGEGkF5iuqKRsShCOg

I enjoy listening on my computer with ear buds because the sound is better and I can watch her play.

 

Very nice gratitude list. What are fairy lights?

 

I love a ceiling fan, sound of the rain, libraries and nature. We have snow where I am - and even though it is miserable to remove, makes roads slippery and narrow, it is beautiful to see fall.

 

13 hours ago, Carmie said:

My word for this year is SIMPLIFY!!

 

Good one! Like the pareto principle - we use only 20% of what we have - and/or spread ourselves too thin. I wonder what you will start off with to simplify.

 

I can improve there. You are an inspiration.

 

Hugs,

Giulietta 💕

 

 

 

 

 

 

[hayduke]

Books, music, nature, all good stuff 🙂

 

It's raining outside here too, I have the windows open.  Very relaxing.

 

Great you're continuing with the taper, onward through the fog!

 

*hugs*

[Sunnyday]

Hi Carmie. Hope that your waves have become a little less intense by now?

It seems most concerts are cancelled for now anyway unfortunately. I was at my first ever concert last year, me and my brothers went to see John Fogerty. It was very fun, I understand why people get hooked on it. Hopefully you can go to one soon enough !

 

Take care, sending hugs.

[hayduke]

Hey Carmie, how's it going?

 

Been missing music shows too, but last few weeks seen some good gigs streamed on the web due to quarantine.  More fun than I expected!

 

Hope things are ok with you

 

Cheers,

Hayduke

[ShiningLight]

Hi Carmie,

 

Thinking of you. Miss your voice here. 💜

[Longroadhome]

On 2/12/2020 at 5:21 AM, Carmie said:

Just documenting: today is day 22 since my drop from 5.80mg to 5.60mg. Been going through lots of waves for more than a week. My brain is in lala land too, struggling to think as my brainfog is so thick, but that’s mainly due to my illness.
 

I’m a major music freak but I’ve gone through a stage where I hardly listened to music at all. Used to go to millions of concerts, haven’t been to one in ages. Just listening to music now. 
 

Going to write another gratitude list:

1.) Am loving the sound of rain outside.

2.) Am grateful for the fan and airconditioning in my bedroom.

3.) I love turning on my fairy lights in the bedroom in the morning. So colourful.

4.) I love taking photos, but have been too sick and have too much on my plate lately to do much photography. The anticipation of being able to do so again makes me happy.

5.) Love libraries. Free books, free dvds and a relaxing atmosphere.

6.) Love books. Got a few from ebay recently, Due to brainfog can only read a little at a time, but books are great!

7.) My friends.

8.) Nature. I want to get some pot plants to put on the balcony. I’ve got two small ficus trees out there, but that’s it. I want to get some herbs too and put them on the window sill.

9.) This is a fun one.😜 Direct debit. Yesterday I got my bank to direct debit my rent into the landlord’s account. Why, oh, why didn’t I think of that before!! I always went into the bank to pay it.

10.) Following on from the last one, simplify, simplify, simplify my life as much as possible. 
 

My word for this year is SIMPLIFY!! There are so many things we can do in our lives that can make things simpler. We just have to put our thinking caps on.

 

Hope you’re all coping as best as you can🧡

How are you doing Carmie ? 

I have read your thread . You were the first mod to contact me when I joined.
 
 

[manymoretodays]

I. Am. Missing. You. Carmie.

Oh, I hope you can update soon and are coping along okay.

You always "get" my sometimes still...... "off humor" jokes.

Or laugh at them politely.....Idk.

And I miss you. ❤️

 

L, P, H, and G,

mmt

[Carmie]

Hi @hayduke. @Sunnyday @ShiningLight @Longroadhome @manymoretodays Thanks for all your messages. Just thought I’d drop by and record that I’ve been at 4.80mg since the 29th of September.The last time I recorded on here was at the end of January last year and I had just gone down to 5.60mg. I’ve had lots of long holds as I’ve been really sick and also had other things to deal with. 

 

I’m not in any waves at the moment, but I’m holding longer because of my health issues. I’ll taper if they settle a little. I’ll fill everything in down the bottom about my tapering once I have some concentration.
 

How is everyone doing? Sending hugs to all🤗🤗

Edited January 9, 2021 by Carmie
Wrong date

[Carmie]

Hi there. How is everyone doing? I haven’t really been on here for about a year or so. I’ve really been struggling with lots of things, and continually reading about how others are struggling was too much for me. It just broke my heart. 
 

I’m struggling with lots of health problems, Chronic fatigue syndrome being one of them. About ten years ago my lungs got damaged accidentally. I don’t feel like going into the details now. Last year my breathing was extremely bad. I struggled for nearly four months at the beginning of the year, struggling to breathe is such a claustrophobic feeling. I couldn’t stop coughing for over a month. It wasn’t Covid. About seven weeks ago my lungs flared up again after I went to the dentist. Something must have irritated them. I’m still struggling with my breathing and I’m scared the damage in my lungs is progressing as I get so many exacerbations. Struggling to breathe is so claustrophobic.
 

Because of this and other things that are happening in my life I haven’t tapered for quite a number of months now as I can’t deal with going through major waves at the moment.
 

I have managed to get down from 5.60mg to 4.80 mg within a year though. I went through lots of waves, but despite everything that was happening in my life I still felt I needed to get some forward movement when it came to withdrawing from these meds.
 

I can only taper in tiny amounts so it will probably take just under a decade to get off these meds. I won’t be jumping off until I’m on tiny amounts as my body has been kindled by being taken on and off so many meds.

 

The taking of these meds all started with my lung injury and then it was downhill from there. 
 

Okay, so on a brighter note I really want to get back into being grateful for things, so here are ten things I’m grateful for:

 

(1) Even though I haven’t been able to get out of bed today I’m grateful that I have a comfortable bed.

 

(2) My weighted blanket. 
 

(3) My cat Heidi.

 

(4) I have plenty of food. We are in lockdown at the moment for three days here in Brisbane, it might be extended, but I’ve got plenty of food. So far the last few months we have been able to live quite normally here in Queensland, except for social distancing. 
 

(5) I love my smoothies. I make them with berries and green powders that have things like chlorella in them. 
 

(6) Netflix. A fabulous distraction.

 

(7) Having the internet and a phone. 
 

(8) Having the most amazing friends who keep asking me if I need anything. I love helping people, but find it hard to accept help. A friend insisted on taking me to the doctor the other day  and told me I have trouble accepting help.😁 Well, I say: “Good on her!” She twisted my arm😄.

 

(9) Plants. 
 

(10) Water. I love drinking water and I love the sound of water. It rained the other day and it was the most glorious sound. 
 

I hope everyone is coping as best they can, sending much love🧡

[Carmie]

Just documenting: Haven’t had a major wave in a little while as I’ve been holding at 4.80mg since September 29th of last year.  Have had to take antibiotics, had no choice as nothing natural I did worked. This is the third day on them, I’m going through a small wave this evening, nothing major though. I’m more concerned about other health issues. 
 

It’s amazing how things affect us when we are coming off meds. Magnesium and fish oil help a lot of people, but they ramp up my withdrawals. I eat lots of oily fish instead of taking the tablets. I’m okay with vitamin D, E, K and Curcumin though. I also take Serrapeptase and Nattokinese and I’m fine with those too. 
 

I hope you’re all doing as best you can, one hour at a time does it🧡

[hayduke]

Welcome back Carmie :-)

 

Sorry to hear your health's a struggle at the moment, and wishing you healing.

 

Well done keeping the taper going even if you're taking it slowly.

 

Good on you for the gratitude lists.  Last week I made a list of the good things I'd managed to do, or had happened in 2020, it helped a lot!

 

Cheers

[Carmie]

19 hours ago, hayduke said:

Welcome back Carmie 🙂

 

Sorry to hear your health's a struggle at the moment, and wishing you healing.

 

Well done keeping the taper going even if you're taking it slowly.

 

Good on you for the gratitude lists.  Last week I made a list of the good things I'd managed to do, or had happened in 2020, it helped a lot!

 

Cheers

Hi Hayduke, 

 

Thanks for dropping by. I’m really struggling to breathe, I burnt my lungs about ten years ago when I accidentally inhaled liquid hydrogen peroxide. I was sterilising some nose prongs, but the liquid was still wet and I inhaled it. So my main problem at the moment seems by inability to breathe properly. It’s been nearly seven weeks now. At the beginning of last year I had a flare up of three to four months of struggling to breathe. I couldn’t even speak for a month or more due to the coughing.

 

I just recently took antibiotics as well, in case I have an infection on top of it. I haven’t had too many problems with the antibiotics, they are amoxicillin, except for a small wave last night. 
 

Not being able to breathe is so claustrophobic. I’m always scared I’m not going to get a reprieve again. As I’m going through such a scary time I can’t taper at the moment. I just need to stay at baseline.

 

Good on you for doing a gratitude list. I’m still going to try and write down a gratitude list of ten things, despite being really scared. Here goes:

 

(1) My Creator.

 

(2) Having a comfortable home and bed. 
 

(3) Doing Netflix marathons to distract myself, I’m watching The Office at the moment, the US one. I’ve never seen it before. 
 

(4) The weather is lovely here in Queensland.

 

(5) Youtube is a great distraction too. 
 

(6) I have all the supplements I need, and plenty of food.
 

(7) My cat was just so cute cleaning herself. 
 

(8) Having electricity and running water. 
 

(9) Having a fan when I need it. 
 

(10) I have a nice tray for my bed where I can put my food, drink etc on. I spend lots of time in bed due to CFS. 
 

The three day lockdown just finished tonight here in Brisbane, but everyone has to wear masks now when going out in crowds. My husband has brain damage and has been living in a care home since the beginning of last year and the care home will still be in lockdown for a while. All age care facilities and hospitals have been in lockdown too. 
 

Just taking an hour at a time and looking at things I can see to be grateful for. Yesterday I was in total survival mode and barely functional, but was able to do a little more today. Some days all you can do is to continue to distract yourself with whatever just to get through the day. I always do that with waves, but now it’s trying to deal with the scariness of not being able to breathe properly. 
 

I would really like to taper again within a month or so. I might have to change my water to tablet ratio to do my next water titration. Still haven’t done the math as yet. 
 

Hope you had a good day Hayduke🤗

[Carmie]

P.s. I‘ve been so stressed about my struggling to breathe properly that I can’t remember if I took my meds tonight. I think I did, let’s hope so anyway. Good night from Queensland, Australia everyone🧡

Edited January 11, 2021 by Carmie
Autocorrect

[manymoretodays]

Oh Carmie,

It sounds really tough. 

Say hi to Heidi the cat for me.  Still missing my old girl, Betsey Ross cat.  Well, and still collecting cat hair, more than 2 months now, since she passed.

And yes, me too, hard to ask for help.  I'm glad you are learning how.  Did the doctor have any suggests for you.....on the breathing?

So many things, all at once, can be tough.  And so sorry about your husband.  

And then Covid runs through everything. 

Here, the political current, is rough, and a bit scary sometimes.  Sure hoping for better harmony in the U.S. and soon.

 

You....are.....a trooper.....and I love your attitude and gratitudes.

 

My fingers are crossed that the breathing gets better quickly this time.  And that healing is coming.

I'm glad you are doing okay with the Amoxicillin.  And resting up, for when your energy returns.  You do have good friends and you may want to go on an outing with them soon.

 

So cool that you are back.

A month sounds good, as far as tapering then. 

18 hours ago, Carmie said:

I would really like to taper again within a month or so. I might have to change my water to tablet ratio to do my next water titration. Still haven’t done the math as yet. 

Happy to help, if needed.....I mean we all are.

 

L, P, H, and G,

mmt

[Carmie]

Hi MMT, 

 

Thanks for dropping around. How are you doing today? No, the doctor wasn’t much help. I bought ventolin the day before I saw the doctor, but it doesn’t really do anything. He told me to keep using it for now.
 

I’m going back to see him in a couple of days time, I know my lung disease is progressive, but hopefully once this flare up dies down I will be able to get to some kind of baseline with my breathing again for now. 

 

Can’t even think about tapering while going through this, it really is very scary and claustrophobic. I’ve been in a bit of a panic actually. 
 

I’m sorry you miss your cat. I just made my cat jump as I stretched my legs and accidentally kicked a packet of sunflower seeds. She’s a nervy little thing. She hides when friends come over. 
 

As regards the amoxicillin, I wasn’t sure how I’d react to it, because we can react negatively to all sorts of things with the meds we are on. 
 

I mustn’t have forgotten the meds last night as I’m not in a wave today. I wasn’t sure as I was in such a panic as I was really struggling to breathe. I actually didn’t sleep the whole night. 
 

Okay, going to do a gratitude list again and try and focus on some positives:

(1) My cat is purring next to me.

(2) Chatted to a friend on the phone today. I was so upset as I was struggling with my breathing and feeling extremely claustrophobic and it was nice to talk to a caring and beautiful friend. 
(3) My diaries. 
(4) Netflix. I’m watching The Office, I’m halfway through season five. It’s good watching things with humour in them.

(5) Had a smoothie for lunch. 
(6) Been too sick to cook lately, but have lots of healthy things that don’t need cooking. 
(7) Love fried onion and capsicum. Need to fry some up when I manage to find a bit of strength this week.

(8) Received more supplements yesterday.

(9) The sun is shining. 
(10) Text messages from friends.

 

Enjoy the rest of your day MMT and everyone else on here 🧡

 

 

[Longroadhome]

2 hours ago, Carmie said:

Hi MMT, 

 

Thanks for dropping around. How are you doing today? No, the doctor wasn’t much help. I bought ventolin the day before I saw the doctor, but it doesn’t really do anything. He told me to keep using it for now.
 

I’m going back to see him in a couple of days time, I know my lung disease is progressive, but hopefully once this flare up dies down I will be able to get to some kind of baseline with my breathing again for now. 

 

Can’t even think about tapering while going through this, it really is very scary and claustrophobic. I’ve been in a bit of a panic actually. 
 

I’m sorry you miss your cat. I just made my cat jump as I stretched my legs and accidentally kicked a packet of sunflower seeds. She’s a nervy little thing. She hides when friends come over. 
 

As regards the amoxicillin, I wasn’t sure how I’d react to it, because we can react negatively to all sorts of things with the meds we are on. 
 

I mustn’t have forgotten the meds last night as I’m not in a wave today. I wasn’t sure as I was in such a panic as I was really struggling to breathe. I actually didn’t sleep the whole night. 
 

Okay, going to do a gratitude list again and try and focus on some positives:

(1) My cat is purring next to me.

(2) Chatted to a friend on the phone today. I was so upset as I was struggling with my breathing and feeling extremely claustrophobic and it was nice to talk to a caring and beautiful friend. 
(3) My diaries. 
(4) Netflix. I’m watching The Office, I’m halfway through season five. It’s good watching things with humour in them.

(5) Had a smoothie for lunch. 
(6) Been too sick to cook lately, but have lots of healthy things that don’t need cooking. 
(7) Love fried onion and capsicum. Need to fry some up when I manage to find a bit of strength this week.

(8) Received more supplements yesterday.

(9) The sun is shining. 
(10) Text messages from friends.

 

Enjoy the rest of your day MMT and everyone else on here 🧡

 

 

Hope today is a better day for you Carmie and the sun shines down on you 

sending hugs your way   ((((((((((( 🤗))))))))))

[JackieDecides]

On 1/11/2021 at 1:47 AM, Carmie said:

Just taking an hour at a time and looking at things I can see to be grateful for. Yesterday I was in total survival mode and barely functional, but was able to do a little more today. Some days all you can do is to continue to distract yourself with whatever just to get through the day. I always do that with waves, but now it’s trying to deal with the scariness of not being able to breathe properly. 

 

 

oh, Carmie, I am so sorry your breathing has been so bad. I am so glad you are able to make a gratitude list: you inspire me, you really do. 

lots of love to you! 

[hayduke]

Wishing you easy breathing @Carmie

[Carmie]

18 hours ago, Longroadhome said:

Hope today is a better day for you Carmie and the sun shines down on you 

sending hugs your way   ((((((((((( 🤗))))))))))

 

3 hours ago, JackieDecides said:

 

 

oh, Carmie, I am so sorry your breathing has been so bad. I am so glad you are able to make a gratitude list: you inspire me, you really do. 

lots of love to you! 

 

2 hours ago, hayduke said:

Wishing you easy breathing @Carmie

Hi there Longroadhome, Jackie and hayduke, 

 

How are you doing beautiful people? Thanks for thinking of me. I’m really not doing great with my breathing and I’m scared, but I hope this flare up will subside eventually. Just scared about the progression of the lung damage. Stupid accident! Can’t change the past though. 
 

I’m stuck in my bed again due to CFS, but that’s no big deal, I’m used to that. Okay, now for finding things to be grateful for, even though I haven’t really been up to much today. Here goes:

 

(1) Definitely glad I have a comfy bed, and I looooove my weighted blanket. I was scared when I woke up in the morning because of my lungs, so I kept my blanket on me for hours. It’s too warm at the moment to use it. I’m feeling a bit calmer. I’ve never had a panic attack in my whole life, so I’m grateful I don’t get those, as struggling to breathe could certainly bring one on. 
 

(2) I joined a support group with people going through the same thing as me. It’s always helpful reading what others have to say. I really want to pop over to more people’s threads here,  but I’m unable to at the moment as I just seem to be in survival mode. 

(3) Got my fan on me. It’s lovely having a bit of a breeze.

 

(4) It’s nearly 3pm but I haven’t had the concentration as yet to distract myself with Netflix. I’ve just been doing other things on the internet for distraction. Good ol’ Internet. 
 

(5) Woke up to quite a number of messages from my friends. Grateful for my friends. 
 

(6) Okay, okay, brain! Start thinking of other things I’m grateful for. Oh, yes, had a smoothie again for lunch. Yummy! Also some sunflower seeds. Still too sick to cook, but so grateful to have foods one doesn’t have to cook.

 

(7) I’ve got diamond paintings in my bedroom that I did ages ago of different nature scenes etc, so they’re nice to look at.

 

(8) I’ve got a TV in my bedroom, though I don’t really watch TV, I watch the news occasionally on it, but I can get that on my iPad too. I mainly use my TV for dvds. I watch Netflix and Disney on my iPad. I’m watching The Mandalorian on Disney and The Office on Netflix. 
 

(7) A friend of mine got me into K-dramas. I never liked watching movies where you had to read the subtitles, but some of the Korean Dramas are fantastic. Just finished watching my first one: Crash Landing On You. It’s fantastic!! Started watching Descendants Of The Sun, though today I don’t have any concentration to read my shows.😁

 

(8) Im looking forward to dinner, there will be some kind of tinned fish, as well as sauerkraut and some other things I don’t have to cook. I’m only eating things that don’t cause inflammation. 
 

(9) Got a doctors visit tomorrow. I don’t know how much he can help with my lungs, as he told me to keep taking ventolin last time, which doesn’t do anything. I don’t trust doctors at all anymore and I research everything. I’m still grateful we have doctors though as we do need them at times. I got hit by a car once and was in hospital for three months, I certainly needed them then. 
 

(10) Wow! I made it to number ten. Who would have thought? Okay, okay. Oh, yes, I have lots of clean clothes. I’ve been living in bed mainly and I’ve got lots of nightwear too. Haven’t had to wash in a while, though as soon as I find some strength again will do a wash. 
 

Anyway one and all, I hope you’re all coping okay. Might watch some Netflix now, sending much love🧡🧡

[Carmie]

Was just looking at my Seroquel packets. I’ve managed to stock up on a few years worth as I’m water titrating and each tablet makes a number of doses. I only take one dose at night time. It certainly gives you a bit of peace of mind knowing you have back up for a while. I’ve still got many more years of tapering to go though, so I don’t have close to enough tablets to finish my taper. Nevertheless having a few years of tablets eases my mind. 
 

I asked my psychiatrist for a new script every time I went, even if I hadn’t finished the last one. He was more than happy to prescribe it. The only reason I see him is to get the script, so I tried to go fairly frequently to stock up. 
 

I really want to do my next taper soon, but I’m under a lot of stress because I’m really struggling to breathe at the moment due to a lung injury about ten years ago. The flare up has lasted about two months so far. Scary stuff!
 

Hope everyone is coping okay🧡

 

[Carmie]

Okay, just going to write my gratitude list for today. I find thinking of the things that you’re grateful for really helps. 
 

(1) I have enough Seroquel to last a few years, so I don’t have to worry about running out for ages. I hope everyone manages to get a store up a few extra meds. It certainly brings peace of mind.
(2) Just had some macadamia nuts. Yummy! 
(3) Also had some oysters. 
(4) My cat is happy as she got some more cat food.

(5) A friend was kind enough to take me to the doctors today. 
(6) Did some grocery shopping, so I have plenty of food. 
(7) Had a nice refreshing shower.

(8) The weather is lovely.

(9) Going to watch a show on Netflix this eve.

(10) My brain has frozen, trying to think of a number ten🤔 Oh, yes, another friend rang me today and said if I needed anything to ring her. Very kind indeed!

 

I hope everyone manages to find things they’re grateful for every day, despite all. It’s not always easy when one is just in survival mode, but there really is always something we can be grateful for. 
 

Sending hugs🤗

 

[Sunnyday]

It's good to hear from you Carmie! I have been thinking of you while you were away, I think many of us have. I really hope you'll feel better soon though, and am sorry you have to experience that. 
I also still do the gratitude list every evening, as I think it makes such a big difference with the mindset. 

 

Sending hugs back to you. 

[sunnysideup69]

Hi @Carmie, it's so good to see you here again.

Thanks for your kind words yesterday on my thread, it really helped me not to feel guilty or bad about pulling out of a sponsored event. The spirit is willing.....but the nervous system is still too fragile. 

Your gratitude lists are so inspiring, really must get back into that habit myself, been in a bit of a slump thos past three or four weeks, time to lift myself up a bit.

Really sorry to read you're suffering with your old lung injury, wishing it settles again for you soon.

Love and hugs xxx

[Carmie]

11 hours ago, Sunnyday said:

It's good to hear from you Carmie! I have been thinking of you while you were away, I think many of us have. I really hope you'll feel better soon though, and am sorry you have to experience that. 
I also still do the gratitude list every evening, as I think it makes such a big difference with the mindset. 

 

Sending hugs back to you. 

 

3 hours ago, sunnysideup69 said:

Hi @Carmie, it's so good to see you here again.

Thanks for your kind words yesterday on my thread, it really helped me not to feel guilty or bad about pulling out of a sponsored event. The spirit is willing.....but the nervous system is still too fragile. 

Your gratitude lists are so inspiring, really must get back into that habit myself, been in a bit of a slump thos past three or four weeks, time to lift myself up a bit.

Really sorry to read you're suffering with your old lung injury, wishing it settles again for you soon.

Love and hugs xxx

Hi Sunnyday and Sunnysideup, 

 

Thanks so much for bringing your sunshine to my thread☀️☀️☀️. Thanks for your kind words too. Yes, I definitely find that thinking about things to be grateful for can help a lot. Good on you Sunnyday for doing a list every evening, and I hope that you manage to get back to doing one too Sunnysideup. 
 

I’m sorry you’re going through such a rough time Sunnysideup. I’m going through a really rough time too, though at the moment it’s because of my lungs, not withdrawals. I haven’t tapered for ages, but hope to again the near future. Never feel guilty about having to back out of things when you’re this sick. It’s best not to overdo anything with a fragile nervous system. I’m used to pacing as I’ve had CFS for 26 years. I don’t push myself beyond my limits. I hope that you find something else that can bring you joy, something not so strenuous. 

Okie dokie now, let’s see if I can get my gratitude list down here for today. I’ve been in bed most of the day, but here goes, I can always seem to find things to be grateful for:

 

(1) Managed to write a bunch of letters.

 

(2) Watched a show on DVD: Seachange. It’s an Australian show that was made quite a while ago. They just did another season recently, but I didn’t really like that one. A lot of the old characters were gone and it was no longer filmed in the same place. I love all the quirky characters in the show, and I love that it’s set near the beach. 
 

(3) I’m enjoying a glass of water with some apple cider vinegar and stevia at the moment. It’s nice and tangy. 
 

(4) Organised a holiday near the beach at the end of the month with my husband and one of his care workers. My husband now lives in a care home. Let’s hope Covid stays at bay, otherwise that will be cancelled. If it does get cancelled, we will do it another time. 

 

(5) A dear friend rang me, which was very encouraging. I couldn’t talk much, as I would start coughing, but it was nice to catch up. 
 

(6) I love fine tip felt pens, they are my favourites to write with. 
 

(7) Love paper and stationary. 
 

(8) Got my internet back, it died yesterday evening so I rang the company and it’s all good again. All I had to do was to turn  the modem and the other box off and on again, and dada it was fixed😁. Reminded me of the IT Crowd: “ Have you tried turning it off and on again?” 🤣🤣

 

(9) My fan is blowing some lovely air on me. 
 

(10) My cat is lying on her back with her legs up in the air, so cute. Grateful for animals.

 

Good night from Australia🧡

[Carmie]

Went to the doctor this week for a health issue, but I really struggle to trust doctors now. Anyway, he was a new doctor as I wanted one within walking distance of where I live. 

 

I had been to that clinic many years ago. He was actually a really nice doctor, but going through what we all go through now with withdrawals, I don’t think any of us blindly trust doctors anymore. I’m sure we all do lots of research ourselves. 

 

He asked me what medications I was on and I told him I was on 4.80mg of Seroquel, and he was saying that’s a pretty small amount. Straight away my brain goes: It’s definitely not a small amount when it comes to how much it effects you when you taper it. 
 

I get waves even tapering at 3-4%. If I tapered at a higher percentage I would get severe akathisia again, and I really don’t want to go there again. 
 

It feels like we are imprisoned by these meds. 
 

We can’t change what’s already happened though, all we can do is to keep moving forward as best we can. Here’s to moving forward one step at a time. Our bodies have a remarkable ability to heal, though it can take a long time. We will get there eventually.

 

Hang in there, sending sunshine ☀️☀️☀️
 

 

[hayduke]

Fingers crossed for your holidays Carmie!

 

I remember Sea Change with Sigrid Thornton, might give it another go.  For 90s Aussie TV I watched Big Sky on DVD not long ago, some nice bush flying stories in that one, at least in season 1.

 

Cheers

[Carmie]

4 hours ago, hayduke said:

Fingers crossed for your holidays Carmie!

 

I remember Sea Change with Sigrid Thornton, might give it another go.  For 90s Aussie TV I watched Big Sky on DVD not long ago, some nice bush flying stories in that one, at least in season 1.

 

Cheers

Hi there Hayduke, 

 

Thanks for dropping by. I haven’t actually seen the Aussie show Big Sky. I must check it out if it’s playing anywhere. Yes, SeaChange is with Sigrid Thornton, I really like her. She’s pretty good in The Man from Snowy River too. 
 

It’s been really good to see you’ve been doing so well lately, good for you👍
 

Well, it’s about 7.30pm now, thought I might do my gratitude list before I go to beddy byes. Going to try to go to bed before 10pm.

 

When one’s nervous system is shot from these meds and CFS it’s not always easy to fall asleep early though. Some nights I’m still awake after midnight. My lung issues aren’t helping at the moment either, but at least if I go to bed my body will get some rest. I’ve been in bed all day, but I’ve been on my iPad and writing letters, that’s different to just lying there and doing nothing. 

 

Well here goes my gratitude list again: 

 

(1) Just made myself some fresh lemonade with a couple of lemons and stevia. I just put them in the NutriBullet and it all mixes nicely. It’s yummy🍋🍋

 

(2) Wrote more letters today. They were a good distraction.📝

 

(3) Got a phone call from a friend today, but couldn’t chat as I can’t stop coughing when I talk. It’s nice to be thought of though☎️
 

(4) It rained today which was absolutely glorious, it actually has just started raining again. It’s really pouring down heavy now🌧💦

 

(5) I’ve got fresh ginger, so I can make ginger tea. Another yummy!🫖

 

(6) Watched some more of the American version of The Office today. I’ve never seen either, but I’ve almost finished season five now.📞📦🗄 It has been a good distraction too. 

 

(7) I don’t have much strength, but I managed to do a tiny bit of housework🎉

 

(8) I’m so braindead, struggling to think of ten things. Come on Carmie, you can do it!! Oh, yes, I got two lovely heart warming messages from friends📱

 

(9) Ate more macadamia nuts today. They are my favourites, I also have walnuts, pecans, sunflower and pumpkin seeds😋

 

(10) I’ve got all the ingredients to make chia puddings. I might make some tomorrow. I make them with almond milk, stevia and either cocoa or cinnamon. 🥣

 

I did it, yay!! Time to crash now. Good night🌗⭐️⭐️⭐️

 

[JackieDecides]

On 1/15/2021 at 2:15 AM, Carmie said:

Organised a holiday near the beach at the end of the month with my husband and one of his care workers. My husband now lives in a care home. Let’s hope Covid stays at bay, otherwise that will be cancelled. If it does get cancelled, we will do it another time.

 

I sure hope this happens, as soon as possible. 😍

[Rosetta]

Hi, Carmie.  I hope you get that holiday.

[Carmie]

16 hours ago, JackieDecides said:

 

I sure hope this happens, as soon as possible. 😍

 

13 hours ago, Rosetta said:

Hi, Carmie.  I hope you get that holiday.

Thanks Jackie and Rosetta, 

 

I hope it happens too. It will be nice being close to the beach for a few days. I have to take my husband everywhere in a wheelchair, as he’s prone to falling. We have an apartment overlooking the beach, I’ve actually stayed there before with friends.

 

The support worker that’s coming with us is a really nice guy in his twenties. He’s a musician too. I told him he should do some busking at Surfers Paradise if he can get a permit. 
 

I’m hoping to take my husband to Seaworld, Outback Spectacular and Currumbin Wildlife Sanctuary, and maybe a little river cruise. Let’s see if we fit it all in.😁 The support worker pushes the wheelchair, just as well, as I won’t have the strength to do that much pushing. 
 

Anyway, here’s my gratitude list for the day. I’ve been home all day, mainly in bed, so I haven’t been up to a lot, but I’m sure I can still fill out a ten things I’m grateful for. Here goes:

 

(1) I’m actually lying on a banana lounge on my balcony at the moment. The weather is perfect and it’s lovely being in the fresh air. 

 

( 2) It’s glorious this time of day, beautiful twilight. The day is slowly turning into night.

(3) I can hear the kookaburras singing. We used to feed kookaburras for a long time, they always flew onto the balcony, as well as magpies and other birds. I haven’t fed them for ages, but if I put food out again I’m sure there will be plenty of birds again. The magpies used to be really nosy first thing in the morning. As regards the kookaburras, I think there was one that came for food in the beginning and then we ended up with about four. He brought his family😁
 

(4) I lay in the sun on the balcony for a short time in the afternoon. It was glorious. Haven’t used my banana lounge on the balcony for ages, I must do more of it. 
 

(5) I can see the moon now, the beautiful moon. 
 

(6) Just saw a bat fly by. Love watching flying creatures. And there goes a bird.

 

(7) Speaking of birds, if anyone wants to have a laugh go to YouTube and check out The Hooded Grebe Courtship Dance. It’s absolutely hilarious, it made me laugh out loud. I’m grateful that there are videos that make me laugh. 
 

(8) I had a nice ginger tea made with fresh ginger. I love teas.

 

(9) Im grateful for one of my sun hats. I used it on the balcony today. It fits so perfectly that no matter how windy it is it stays on my head. It wasn’t expensive, so a while back I bought a few more of the same hat for when that one gets old. I also found the same hat in a different colour a few months back, so I got one of those as well. 
 

(10) Number ten is: I don’t think I want to leave the balcony this evening. It really is glorious out here. I’ve got a big bottle of water, I’m really grateful for water. There’s a lovely little breeze now too. 
 

Am trying really hard to keep my chin up, struggling with my breathing is really a downer. Will have to get more tests etc done in the future. Thinking of things I can be grateful for each day is good for my well-being. 
 

Take care🧡

 

[neroli]

Hi Carmie

 

Thank you for popping in to my thread.

 

Things are much of the same, except the legs are getting stiffer and heavier.  Most of the time in bed now.  Housebound.

 

Crawling off the diazepam.

 

Glad you're getting some time at the beach.

 

Best of wishes

 

Neroli 💜

[Carmie]

7 hours ago, neroli said:

Hi Carmie

 

Thank you for popping in to my thread.

 

Things are much of the same, except the legs are getting stiffer and heavier.  Most of the time in bed now.  Housebound.

 

Crawling off the diazepam.

 

Glad you're getting some time at the beach.

 

Best of wishes

 

Neroli 💜

Hi Neroli, 

 

I’m so very sorry to hear that you’re still having trouble with your legs, and that you’re housebound a lot. Have you had any reprieve whatsoever over the last year? Good on you for crawling off the diazepam. I’m crawling off the Seroquel too. I haven’t tapered since September, so I’m doing okay withdrawal wise. 
 

I’m just waiting until after this holiday, if it works out, and then I’ll taper again. I’m extremely stressed with my lung problems, I’ve been struggling to breathe for about two months now. Last year I had a flare up that lasted about three or four months. Scary stuff! 

 

Okay, I’m going to do my gratitude list again. I need to keep focusing on things that I’m grateful for so I don’t go into a dark hole. Here goes:

 

(1) One of my friends took me to get a test done. I’m soooo grateful for this kind and caring soul.🧡

 

(2) This same friend will take care of my place and feed my cat if all goes well and I manage to go on a holiday near the beach next week with my husband. 😺😺 Let’s hope Covid stays at bay until then. We don’t have any community transmission at the moment. All the cases we have are from overseas and they go straight into quarantine. Things can change at the drop of a hat though, so let’s see if the holiday happens. We had a scare recently when one of the cleaners at a hotel got Covid. 
 

(3) I’m grateful that my husband has great support workers where he lives, and also amazing support workers who come from outside. I’m grateful for the NDIS, the National Disability Insurance Scheme, who pays for the support workers. I’m on a disability pension and so is my husband, so we wouldn’t be able to afford them without this scheme. A support worker will be coming with us if we end up going on holiday. 🌊🌊🌊🌊
 

(4) I got some lemons and Manuka honey today, so I’m looking forward to a nice warm cuppa later on. 🍋🍋🐝🐝🐝
 

(5) Got some more stationary and pens. Yay!📃📃🖋🖋

 

(6) Just had a cocoa drink with almond milk and stevia. 🥤
 

(7) Bought myself some vitamin C🍊, and I didn’t react to it. I’m on quite a few supplements now that I don’t react to. Yay!!🎉

 

(8) Just chilling on my comfy bed now🛏 and I’m going to watch some Netflix soon 🎞🎞

 

(9) I’m grateful for hope. There’s always hope with whatever we are going through☀️
 

(10) I might have to get rid of my real plants in my unit that are in soil, as the potting mix probably isn’t good for my lungs. I’m grateful for artificial plants that still brighten up one’s place and also for plants that grow well in just water🌿🌿🌿🌿I have some of both, I’ll probably get more. It cheers me up looking at plants🌿🌱🍃🌸🌼

 

Bye for now🧡

[neroli]

Hi Carmie

 

 

59 minutes ago, Carmie said:

Have you had any reprieve whatsoever over the last year?

 

Nope.

 

1 hour ago, Carmie said:

I’ve been struggling to breathe for about two months now. Last year I had a flare up that lasted about three or four months. Scary stuff!

 

I'm really sorry to hear this - it must be scary.  I do hope you get a reprieve from this and soon.

 

Sounds sensible that you have held your taper.  You can pick it up again when it feels more manageable.

 

It's great that you have such good friends.  They are priceless.

 

All good wishes to you

 

💜

[Carmie]

On 1/18/2021 at 4:30 PM, neroli said:

Hi Carmie

 

 

 

Nope.

 

 

I'm really sorry to hear this - it must be scary.  I do hope you get a reprieve from this and soon.

 

Sounds sensible that you have held your taper.  You can pick it up again when it feels more manageable.

 

It's great that you have such good friends.  They are priceless.

 

All good wishes to you

 

💜

Hi there Neroli, 

 

I’m so very sorry to hear that you’ve had no reprieve from your leg problems. I hope that you’re coping okay. 

Thanks for your kind words too, it’s been exactly two months today since my lungs flared up and I’m definitely looking forward for them to settle again. I always get scared they won’t settle as I get so claustrophobic.
 

Yes, friends are certainly priceless, I really do appreciate my friends. I hope you are able to spent time with yours too, it definitely brightens one’s day, no matter what mess we are in. 
 

Well, it’s time to do my gratitude list again, to focus on the positive:

 

(1) A friend popped around today and brought me some delicious fruit🍒🍑, after which she took me up to the shops as I had to pick up some supplements from the post office.📦

 

(2) Just had a really yummy Smoothie with blueberries 🫐and greens🥬, such as spirulina. It was delightfully cold🥤. Also got some more lemons and made a warm lemon and Manuka honey cuppa before 🍋🍋🍯

 

(3) I love the sound of the fan, it’s so relaxing (okay, looking for a fan emoji. There may be one there, but I can’t find it it??) Loving the breeze of the fan💨

 

(4) Got some really nice artificial plants today, they’ve got that beach vibe 🏖🌿🌿🌿

 

(5) The sun is shining☀️☀️☀️☀️
 

(6) Youtube is cool😎. One can find pretty much any subject on there, it’s a great distraction when you need something to distract yourself with. 
 

(7) I’m grateful that my tummy is full, I always have plenty of food🍓🫐🫒🥒🥬🥦🫑🥑🥘🍗🥩🥗

 

(8) I love putting the sound of rain 💦💦on when I go to sleep at night. I don’t do it every night, some nights just the relaxing sound of the fan is fine, or just quietness.⭐️⭐️

 

(9) There’s a delightful breeze coming through the window🪟 at the moment💨

 

(10) I managed to go for a short walk today and yesterday.🚶🏻‍♀️👟

 

Well, that’s another day’s gratitude list done and dusted🎉🎉

 

Sending hugs🤗🤗

 

 

[Carmie]

Just documenting: 

 

My last drop from 5mg to 4.80mg was 4%. 
 

I’m going to be tapering again at the end of the month. If I drop by another 0.20mg, which makes it 4.60mg it will be a 4.2% drop. Still wondering if that tiny bit of a change will make a big difference. Maybe, maybe not. 
 

At the moment I’m using a 25mg tablet with 25ml of water, so it’s a 1:1 ratio. Each ml has 1mg, so there are five lots of 0.20mg in a ml. I think after this next drop I will have to add more water as 4% of 4.60mg will be 0.18mg. If I go down by 0.20 that will be 4.5%, which is way too high a percentage. I can’t taper any quicker as I will end up with severe akathisia. 

 

I’m not  a fan of math, but by some miracle I have managed to get myself down from 300mg to 4.80mg so far. It will still take me many, many years to get off these meds. 
 

Take care everyone🧡

 

Edited January 20, 2021 by Carmie
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