Carmie: accidently doubling up on Seroquel one day while tapering

[Carmie]

15 hours ago, ShiningLight said:

Carmie,

 

Wow that sounds like an awful "friend" (we have to put it in quotes). I'm glad you decided to give her the boot. I told some people about the long friendship and then I felt dumb for putting up with it for so long.

 

I hope your husband gets well soon.

 

You are in my thoughts often. It sucks that the vaccine worsened your health conditions. I wish you and your 🫁 much healing and love.

Hey there ShiningLight, 

 

Good morning from Australia and thanks for your kind words. My husband is still doing okay despite Covid. He had another test yesterday and still has Covid after the first test ten days ago or so. He’s in isolation in his room. He gets such amazing care at the place he lives. 
 

I’m glad you recognised a toxic friendship too. They’re so exhausting and draining. 
 

Time for a gratitude list: 

 

1. Got a lovely card from a friend💌. It’s wonderful getting something in the mail📮when technology has taken over everyone’s lives. 
 

2. The temperature is nice. I haven’t started my day yet really, still in bed, but when I have the strength will get up and have a nice refreshing shower🚿🚿🚿

 

3. I did a home delivery grocery order a couple of days ago and it arrives tomorrow morning, looking forward to some goodies. They may not have everything in stock I ordered, I’ll find out on the day, but I’m so grateful we have so much food, we can easily take it for granted🥬🍠🧅🥕🥥🫐

 

4. I ordered some smoked trout🐟.Such a yummy treat, I love smoked salmon too. Let’s see if they still have some in stock. 
 

We have a little bit of a shortage of certain things in supermarkets because a lot of work staff in the whole industry from farmers to delivery men to shop staff are isolating due to Covid. 
 

With my last order though, I got everything I ordered, except for some frozen veggies. I got plenty of fresh veggies though, 🥦🥬🥑🍠 We do really have it so good, even having groceries delivered to our homes. Such luxury!!

 

5. Happy to have my cat Heidi, though not too happy when she meows for food really early every morning 😹😹😹

 

6. My weighted blanket is one of the best things I’ve ever bought. So comforting🛌
 

7. Cups of tea are yummy. I looooove green tea. I like trying different teas☕️
 

8. I’m grateful that I’ve managed to stock up on most of the supplements I need. 👍 I mainly order them from Chemist Warehouse and Iherb. 
 

9. One of my nieces has moved up here to sunny Queensland from Canberra☀️☀️☀️
 

10. I’m grateful to have the ability to read and write. Something else a lot of us can take for granted📝📝📚📚🖊🖊

 

Okay, one, two, three, let’s see if I can manage a little strength to have a shower. It always feels so nice afterwards. 
 

Sending hugs🤗

[Cheeky]

Hi @Carmie,

I just love your gratitude list. That’s something I need to do . 
sending hugs your way 

 

Cheeky

[Longroadhome]

Hi @Carmie

Always love reading your gratitude list. Animals are such good company and it’s lovely you have your cat. I had a cat called Sam from a kitten until she was 19 years old. Clumpy fur ( wouldn’t let me brush her!!) no teeth and incontinent at the end but such a character and I loved her very much. 
How are things? Is your breathing any easier? 

[hayduke]

Hey there @Carmie

 

Hope your bloke is on the mend, and also hoping you are breathing more easily.  How's your weekend shaping up?

[Carmie]

On 1/20/2022 at 3:35 PM, Cheeky said:

Hi @Carmie,

I just love your gratitude list. That’s something I need to do . 
sending hugs your way 

 

Cheeky

 

On 1/28/2022 at 9:32 PM, Longroadhome said:

Hi @Carmie

Always love reading your gratitude list. Animals are such good company and it’s lovely you have your cat. I had a cat called Sam from a kitten until she was 19 years old. Clumpy fur ( wouldn’t let me brush her!!) no teeth and incontinent at the end but such a character and I loved her very much. 
How are things? Is your breathing any easier? 

 

On 1/28/2022 at 9:54 PM, hayduke said:

Hey there @Carmie

 

Hope your bloke is on the mend, and also hoping you are breathing more easily.  How's your weekend shaping up?

Hello all you beautiful people, thanks for dropping around to my thread, I hope you’re all coping as best you can🧡

 

First I just want to mention I did another 0.05mg drop 2 days ago, so now I’m on 3.90mg. 
 

Cheeky, I hope you’ve got those gratitude lists happening. You don’t have to do it on here, you just need a book or a diary or journal on an app. 
 

Longroadhome, how lovely you had such a beautiful cat for such a long time. I’m sure you have lots of lovely memories there. 
 

I’m still in a flare from the vax, my lungs are inflamed, not sure if I’ll be able to do the boosters. Struggling to breathe every day takes its toll. I’m still at home in isolation and will probably be living here for a quite a while, the way things are going. Just taking a day at a time and making decisions in all aspects of my life one day at a time. 
 

Hayduke, yes, my husband didn’t have many problems with Covid and is over it. He did have a fall though a week ago and still has tons of back pain. My heart breaks, I just spoke to him on the phone. I hope his pain settles because it really hurts me a lot seeing him in pain. He had a stroke a number of years back n he’s not steady on his feet, even with a walker. He’s not very functional at all now, his mobility is getting worse. He uses his wheelchair most of the time, sad to see the deterioration.

 

Anyway, I’m going to do a gratitude list despite all, here goes:

 

1. Finally got the QCAT tribunal over and done with. It was for being my husband’s guardian and administrator. I’ve been his guardian and administrator for the last two years, and this time they’ve appointed me his guardian for the next five years. The maximum they can do is five years at a time. 
 

No more tribunals for five years. Yay!👏 I just have to give them paperwork every year🗒🗒🗒🗒🗒🗒
 

The person who was residing over the tribunal was giving me so much praise about how well I was taking taking care of my husband, and that warmed my heart. 
 

I’m grateful I’ve had so much help from support coordinators, support workers, my niece who used to work for NDIS ( the national disability insurance scheme), nurses, doctors etc. 

 

Very grateful indeed🧡

 

2. Okay, speaking about being grateful for people, I just can’t get over how many caring and wonderful friends I have. I don’t always feel worthy, but they are always there for me no matter what. Such a blessing🤗🤗🤗

 

3. I’m on my bed and I’m enjoying the breeze from my fan💨💨💨

 

4. My brain fog from CFS has been so bad, but I’m grateful I managed to have enough brain power to write some thank you cards for some of my friends💌💌💌 Don’t have the energy to walk to the letterbox to mail them yet, but I will get there📮

 

5. Sooooo grateful for home delivery, just had a couple of boxes delivered 📦📦. Also ordered more groceries, they arrive in a couple of days🍐🥕🫐🐟🥬. Still got plenty here for now. 

 

6. Since I’m stuck on my own, I’m grateful for things such as Netflix etc. Finished watching Doc Martin📺. I’ve got heaps of DVDs💿💿💿 too, but there are so many streaming apps as well. We really have an abundance of shows and movies to distract ourselves with. 
 

7. Finally got a subscription to Apple News. It was annoying seeing stories I wanted to read n not being able to because I didn’t have a subscription🤓

 

There are also lots of magazines one can read on there too. My CFS brain fog has been pretty bad lately, so I haven’t been able to read much though. 
 

I prefer reading physical books etc still though📚📚📚There’s nothing like reading an actual physical novel. Zone out.

 

8……..l just got interrupted as I was writing this, my sis in law rang. It was lovely having a chat with her☎️. She had breast cancer last year, but she’s in remission. So grateful.

 

9. I have to really say again that I looooooooove my weighted blanket 🛌

 

10. Catching up with friends via Zoom has been great. Technology can certainly be a blessing at times, even though it can be frustrating at the same time. 
 

I loved growing up being a tomboy and playing outdoors until dark when I was a kid🌖⭐️ When we were called inside it was like: “ Noooooooo!!”😂

 

Okay, managed to do another gratitude list. Phew! One day at a time does it when it comes to this thing called life. 
 

Sending much love💕

[hayduke]

6 hours ago, Carmie said:

Hayduke, yes, my husband didn’t have many problems with Covid and is over it. He did have a fall though a week ago and still has tons of back pain.

 

Ow!  Well I'm glad he's recovering well from corona, and sorry he's in pain from the fall.  I hope you guys get more time together before long.  He sounds lucky to have you looking out for him.

I hope your cut is going well, that's true grit there Carmie 🙂

[Carmie]

On 2/2/2022 at 9:06 PM, hayduke said:

 

Ow!  Well I'm glad he's recovering well from corona, and sorry he's in pain from the fall.  I hope you guys get more time together before long.  He sounds lucky to have you looking out for him.

I hope your cut is going well, that's true grit there Carmie 🙂

Hey there Hayduke, 

 

Thanks for dropping around and for your kind words. I don’t think I’ll be seeing my husband for a while as I’ll be in isolation forever with my respiratory and autoimmune issues. Maybe one day one of the support workers can bring him to a park near where I live and I’ll wear a mask and social distance. I can’t afford to get Covid as it could be life threatening for me. 

 

My husband can only have visitors for two hours at a time at the moment and that’s not enough time to get him here as he lives on the Southside and I live on the Northside. I do speak to him on the phone though. 
 

Lots of my friends have had Covid, plus my niece and her family. They’re all doing fine though. 
 

Anyway, time for another gratitude list:

 

1. I’m having the most delicious warm drink at the moment. It’s rooibos tea, I found an AIP compliant creamer made with coconut🥥. It’s so delicious and super creamy😋. I’m allowed some honey on AIP, but I only just recently bought some and I added that as well🍯. It’s such a yummy drink and I’m really enjoying it at the moment. I don’t always like my drinks sweet though, I will usually just add the creamer or have rooibos as it is. 
 

2. Been having lots of lovely Zoom calls with friends, such an encouragement 👩🏻🧑🏿👩🏻‍🦰👩🏻‍🦳👨🏼‍🦳👧🏻👵🏻👴🏾❤️
 

3. I’m happy that my husband can have external support workers again, even if it’s only for two hours at a time. They take him out for a little while🌳🌳 He was in lockdown for a few months. 
 

4. Started reading a novel and got one third of the way through it📚📖. Yay!!! It’s a John Grisham novel, love John Grisham. Because of severe CFS brain fog I can’t always read a ton. Hopefully I’ll finish this novel. I started a different novel ages ago and never finished it. I left it at my husband’s care place and now I can’t grab it to finish it, so I thought I’d start a new one. 
 

Watching movies and TV shows really isn’t the same as reading a novel, as regards zoning out. 
 

When I finish this gratitude list I might get back to reading my novel.🤓

 

5. Catching up with friends via Zoom again tonight😍

 

6. Ordered some more groceries a couple of days ago and they are coming tomorrow morning🍌🥬🥕🍗🐟

 

7. Ordered a compression leg massager and it arrived a couple of days ago, I haven’t taken it out of the box yet. My natural therapist uses one on me for lymphatic drainage while he’s giving me other treatments as well.
 

Thought it would be good to have one at home, seeing I can’t see him at the moment, I always got trains and buses there as he lives a long way away🚌🚌🚊🚊

 

8. Finally found a little bit of strength to walk to the letterbox to send my thank you cards to friends💌💌💌📮

 

9. Found another yummy product for my AIP diet, and that sweet potato noodles🍠🍜. They are so good and quick to make. I can’t have grains, but now I have pasta made from cassava and noodles made from sweet potatoes. I’m always excited when I find something else that’s yummy that I can eat.  
 

I have to make all my meals from scratch so when I find things that don’t take too long to make I get excited!!

 

When I got my carrots last time🥕🥕🥕I just grated them and put them in a couple of my glass containers. They are so handy in so many dishes.

 

Food prep is great if you’re well enough to do things in advance.

 

10. Okay, let’s think of one more thing to be grateful for. Hmmmmmm🤔 It’s a glorious sunny day today☀️☀️☀️☀️
 

All done. 
 

Take care, sending hugs🤗

 

[hayduke]

That's tough having to be apart like that.  I hope you get video calls and stuff at least.  It would be good to arrange a meeting in the park like that.

 

I'm a stickler for being outdoors when I can since the pandemic.

Cranky at the govt too for just letting omicron run wild because they can't be stuffed any more.  I see the logic of letting a mostly immunised population get used to the least worst strain of the bug, but feel angry that old people or those with marginal health are expected to pick up the bill or isolate even more.

Glad to hear your crew haven't been too affected by it.

 

Cheers

[Carmie]

Hi there again @hayduke

 

Yes, I’m glad too that my crew weren’t too badly affected when they got omicron. My niece had digestive problems for a while afterwards, but she’s fine now. 

Like you, I’m a massive fan of the outdoors too.

 

My CFS brainfog is bad, but I’m going to write a small gratitude list again today: 

 

1. I’m in bed, but enjoying the breeze of my fan. My cat is fast asleep, looking cute as always. 
 

2. Caught up with friends via Zoom again yesterday evening, it was so lovely.

 

3. My grocery shopping arrived this morning and I just had some 🍌🍌. It’s after midday, I don’t eat breakfast. When I have a little bit of strength I’ll make some lunch, I’ve got salmon😋

 

4. Got quite a few packets of sweet potato noodles today, and I also bought sweet potatoes. When I don’t have the strength to cook I can just put the sweet potatoes in the microwave  or boil up some of noodles and just add other veggies that don’t need cooking and some tinned fish or meat that I’ve already cooked and frozen. Today, I’m having fresh salmon though. 

 

I’m faint 24/7 and one of my major problems is standing in one spot for any amount of time. I’m okay if I’m moving. I can’t even sit up straight in a chair for long periods of time either. I’m

always finding lounges or sitting on the floor when I’ve been out and about. 

Anyway, looking forward to having my salmon today once I’m able to cook it. Maybe I need to buy a stool that’s high so I can sit when I’m at the stove. So grateful we have such a variety of food.

5. Love the glow of my Himalayan lamp. One of these days I’d love to get a giant one.

 

6. I’m grateful for the beautiful text messages I always get from my friends. 
 

7. I’m grateful we have a mail system and can send cards and letters to friends, as well as other stuff we need to do. Having parcels delivered, as well as grocery shopping is amazing. 
 

8. I looooove flowers

 

9. I love taking photos. Grateful for the digital age of photography, it used to get very expensive developing film. 
 

10. I’m grateful for stationary. Love paper, pens etc. 
 

Another day done. Hope this all made sense😁
 

Sending hugs🤗

[Carmie]

Just woke up and I only have one thing to say: Morning cortisol spikes are no fun when one is going through waves🌊🤓

[Lilabella]

Oh @Carmie they absolutely are the pits. Hope you can get some relief as the day wears on. 

[hayduke]

I occasionally take an L-Theanine capsule for those moments.  Hope your day has taken better shape Carmie

[Carmie]

9 hours ago, Lilabella said:

Oh @Carmie they absolutely are the pits. Hope you can get some relief as the day wears on. 

 

2 hours ago, hayduke said:

I occasionally take an L-Theanine capsule for those moments.  Hope your day has taken better shape Carmie

Hi there Lilabella and Hayduke, 

 

Thanks for dropping in.
 

Great to hear that something helped you with the morning cortisol spikes Hayduke, must check it out. I just try and distract myself first thing in the morning. 
 

I’ve been in a wave pretty much all week Lilabella, amazing how just dropping by 0.05mg can do so much harm. We really are held captive by these meds. I can’t imagine what it would be like not feeling like a prisoner anymore. 
 

Time for a gratitude list: 

 

1. I’ve actually gotten through about 3/4 or more of my John Grisham novel. 📚📚Let’s see if I can finish it in the next couple of days. 
 

I’m grateful for reading and novels. My CFS brain fog is bad most of the time, so when I can actually read a novel I’m very happy. It helps me zone out more than anything else does. 
 

2. Watching Netflix now. Good ol’ distractions! 📺 Joined Disney plus recently too. I’ve had it in the past. 
 

3. I used my slow cooker last night to cook chicken🍗🍗🍗. I hadn’t used it in forever, and I’m so happy to have thought about it again as I’m so very sick and cooking every day takes so much effort. I cook all my meals from scratch.

 

I will be making use of my slow cooker from now on. So handy!🥘

 

4. A friend dropped off some things I needed today, which was so lovely of her. She also left me a present🎁. So very kind. 
 

5. Received a beautiful card💌 and another present from a friend a couple of days ago too🎁

 

6. I haven’t had the strength to go for walks, but the weather is so gorgeous ☀️☀️☀️
 

7. Doing some crocheting, it’s relaxing 🧶, well at least a distraction when nerves are fried. 
 

8. Just had some yummy coconut water🥥🥤

 

9. Now I’m having a nice cup of rooibos tea☕️
 

10. Trying to think of a number ten, my brain is leaving the building. Oh, yes, I had the strength to do a little housework this morning too. 🧹🪣I’m so weak and faint all the time, I can only do it in dribs and drabs. Always happy when I get something done.
 

I started a decluttering challenge ✔️a while ago, I got quite a bit done back then, but haven’t managed to get much further. 
 

When I finally get around to continuing the challenge the next thing is decluttering and cleaning the kitchen. The fridge❄️ and pantry are already done. Just got to do the rest of the cupboards. I’ll get there one day. I actually love decluttering😍Wish my body would follow suit and give me strength to do so. I will get there!!

 

Going back to Netflix now, 

 

Take care💛

[Longroadhome]

Hi @Carmie

ive just de cluttered my house from a house move. I’ve got rid of so much. Had clothes in storage for a year so decided if I hadn’t worn them in a year then I don’t need them. So I took the lot to a charity shop without going through. Yes it feels good to de clutter!!! 
I started drinking rooibos tea months ago because I wanted to eliminate caffeine as much as possible from my diet. I like the taste. I drink it with oat milk. 
 

Do you feel any better ? 

[Cheeky]

13 hours ago, Carmie said:

Just woke up and I only have one thing to say: Morning cortisol spikes are no fun when one is going through waves🌊🤓

I really hate that feeling, it can set your day in a worrying way. I think your doing an amazing job getting down in your Seroquel. 
keep posting those gratitude lists. I love reading them .

 

Cheeky

[Carmie]

20 hours ago, Longroadhome said:

Hi @Carmie

ive just de cluttered my house from a house move. I’ve got rid of so much. Had clothes in storage for a year so decided if I hadn’t worn them in a year then I don’t need them. So I took the lot to a charity shop without going through. Yes it feels good to de clutter!!! 
I started drinking rooibos tea months ago because I wanted to eliminate caffeine as much as possible from my diet. I like the taste. I drink it with oat milk. 
 

Do you feel any better ? 

 

20 hours ago, Cheeky said:

I really hate that feeling, it can set your day in a worrying way. I think your doing an amazing job getting down in your Seroquel. 
keep posting those gratitude lists. I love reading them .

 

Cheeky

Nice to hear from you Longroadhome and Cheeky, 

 

Yes, a good declutter always feels fabulous Longroadhome, all the best with your move. I never keep clothes that I don’t wear, I can’t see the point, it’s just clutter. Glad you were able to get rid of those you don’t wear either.

 

At the moment everything I have in my closet I actually wear. If I stop wearing certain things out they go. I have a friend that inherits everything😁

And yes, rooibos tea is lovely. I’m glad you like it too. 
 

No, I’m not any better. Really struggling to breathe today, not a good start today, waking up in a wave and struggling to breathe. My body doesn’t seem to want to go into remission. Don’t think I’ll be able to do boosters. Might end up living as a hermit forever😁 
 

And thanks for your kind words Cheeky, yes, despite the small amount I can taper every time at least I’m going forward. ➡️ And seeing you like to see gratitude lists, time for another one today. 
 

1. I have to say I’m not having a good day at all, but I’m grateful I had the strength to go for a walk this morning along the bike track behind my place. It’s lovely and green🌳🌳🌳 

 

2. There was a mission to my walking today as I wanted to drop off some pressies to a friend’s young kids👦🏼👦🏻🎁🎁. I wore my mask and stayed outside at a distance.
 

I’m very grateful for the gift of giving. Giving to others can make us all so happy☀️☀️☀️ I’m always happier buying something for someone else than for myself. 

 

3. I finally used my leg air compression massager, it works very well and is good for lymphatic drainage. It’s really funny, when I buy anything electrical it usually sits there for a few days before I try and figure out how to put it together and how it works😂. I’m never in a hurry.
 

I did the same thing with a new vacuum cleaner a couple of months ago😁A few things had to be connected together. I’m barely functional and I’m never in a hurry to assemble new things. I say, let them wait! 
 

4. I’m happy my husband got to go to the beach again with one of his support workers today🌊🌊🌊 It’s my happy place too, but I can’t get into a car with anyone. It’s too risky. Both my husband and two of his external  support workers have had Covid. One has it at the moment.
 

5. A friend rang yesterday evening while I was watching Netflix to tell me about how beautiful the evening sky was, so I went on my balcony. It was glorious 🌄. We had a long chat afterwards☎️
 

6. I was so excited when I managed to unclog a sink. Funny what makes us excited🎉

 

7. Brain fog has been bad, but I read a little more of my novel today. I really want to read more, maybe my brain will let me read a little more this evening📚

 

8. Been watching the latest Mighty Ducks series on Disney Plus. Love Lauren Graham, I’ve watched Gilmore Girls a trillion times📺

 

9. I’ve got so many dishes in the sink, but I have no strength to wash them. I’m grateful that I own dishes though. Gotta look on the bright side☀️☀️🤓

 

10. I’m grateful my optometrist is going to send me my new distance and reading glasses🤓They’re still the same prescription. I ordered them two months ago, but because I don’t go into shops anymore I wasn’t too worried about picking them up as I’ve still got glasses. 
 

I thought I better ring them☎️ as they’ve messaged me a couple of times. They are kind enough to send them to me, at a cost off course😁. I didn’t want to ask my friends to get them as the optometrist is in a major shopping centre and I don’t want to unnecessarily risk them getting a virus, as so many people I know have had Covid. 
 

Well there you have it, another day, another gratitude list. Feeling really low today, mainly due to struggling to breathe. It’s so awful! Being in waves at the same time has made me even more emotional. Stupid neuro-emotions on top of my usual emotions. 
 

One day at a time, yes, one day at a time. One hour at a time lately.⏰

 

Sending big hugs🤗

[EveningMuffin]

@Carmie, I love reading your gratitude lists. Learning a lot from them.

I like how patient you are tapering your seroquel and how your attitude is.

I really hope you will get better. Struggling to breathe must be awful.

 

[Rosetta]

Hi, Carmie.  Thank you for writing your gratitude lists.  I think they help a lot of people.  I’m feeling rather low myself.  I’m not sure what’s wrong exactly, but I suspect there’s a histamine issue going on.  Take care, R

[Carmie]

On 2/14/2022 at 8:31 PM, EveningMuffin said:

@Carmie, I love reading your gratitude lists. Learning a lot from them.

I like how patient you are tapering your seroquel and how your attitude is.

I really hope you will get better. Struggling to breathe must be awful.

 

 

On 2/15/2022 at 8:46 PM, Rosetta said:

Hi, Carmie.  Thank you for writing your gratitude lists.  I think they help a lot of people.  I’m feeling rather low myself.  I’m not sure what’s wrong exactly, but I suspect there’s a histamine issue going on.  Take care, R

Hi EveningMuffin and Rosetta, 

 

Hope you’re both coping as best you can. Thank you for your very kind words. 
 

I’m having an awful time with my breathing, and am feeling very low, but thought I’d write a gratitude list today:

 

1. Got a really gorgeous gift from a friend, they are coasters made with wood and then resin art on top. The resin art depicts the beach🌊🌊🌊, my happy place. I can’t get there now as it’s too risky for me to get into a car with anyone, I have to stay away from people because of my lungs. I looooove the coasters😍
 

What really warmed my heart was the note that came with it, it said: “ These are supposed to represent the beach, so this way you can have the beach with you all the time. “🏖 Awwwww!! 
 

2. I’m grateful that I have plenty of food. Today I had fish and veggies for both my meals.🐟🥦🥬🍠 Yummy! 
 

I don’t eat breakfast, and I’ve gotten back into the habit of not eating anything after 6pm⏰, so I’m back into intermittent fasting. I used to do it for up to a year or so in the past. 
 

3. I’m happy I found a few spices etc that aren’t contaminated with gluten. They’re really had to find, even if they say gluten free they can still be cross contaminated. I love the onion and garlic powders🧅🧄. I also got ginger, turmeric and cinnamon. 
 

I added turmeric and ginger to a big glass of water🥤today, I put it into the NutriBullet so that it mixed really well. Once mixed I put ice cubes in there🧊. I really enjoyed it.  Writing this down just reminded me that one of these days I want to get a big blender and make AIP friendly frappes. I forgot all about that. 
 

4. That kind of follows on to this thing I’m grateful for, and that’s writing and journaling📝. I’ve started doing quite a bit of journaling again. I miss some days here and there as sometimes my CFS brain fog is so extremely severe I can’t write to save my life. Sometimes I can’t be bothered. That being said though, I’ve been journaling quite a bit since the beginning of January. It really is beneficial!!👍👍
 

It’s amazing how when you write 🖊 things down that you get a sense of clarity. I journal in the Notion app. It’s a great app, you can organise all kinds of things in there. I’m glad I found it. 
 

5. I’m grateful for laughter😁. I’m so low lately, but I’ve had to laugh at myself a couple of times when I had some funny moments making meals. 
 

Firstly, I was so excited that I remembered about my slow cooker recently, which I hadn’t used in ages. The last time though I put some chicken🍗🍗in at night time, but I forgot to switch on the power point. Duh!!🤪 I woke up in the morning, touched the cooker and it was cold. I had to laugh😂. Good ol’ brain fog!

 

The other thing that made me laugh was when I boiled some sweet potato noodles🍠🍜. They are just made with sweet potato and water. I went to pour off the water into the sink using the lid of the pot. They are sooooo slippery though and they all ended up in the sink😂. Take two! I use a sieve from now on. 
 

6. I got a couple of lovely cards from friends💌💌

 

7. Was invited to a girl’s Zoom meeting, but was too sick to join. It’s nice to be asked though, love my friends😍

 

8. Good ol’ streaming channels📺 I’ve been watching White Collar on Disney Plus today. 
 

9. I finally managed to do some washing🧺. I have such little strength. Once I start running out of underwear, it’s time to wash, even if I’m the verge of collapse😁

 

10. I’m grateful that my wave🌊isn’t as intense today. 
 

That does it for today. I’m not in a good head space. Feeling very low, but writing this down was good for me. Take care🧡

[kostakonkordia]

6 hours ago, Carmie said:

’m having an awful time with my breathing

I know that, it's awful as hell. But can you tell me more about it. When did it start? 

[Longroadhome]

Thank you  for your gratitude list Carmie I always read them and reflect on what I have to be grateful for. 
I also use the saucepan lid to drain !! Mainly to save time. But it backfired on me too . Last time I burnt my wrist. 
 

[Carmie]

6 hours ago, kostakonkordia said:

I know that, it's awful as hell. But can you tell me more about it. When did it start? 

 

4 hours ago, Longroadhome said:

Thank you  for your gratitude list Carmie I always read them and reflect on what I have to be grateful for. 
I also use the saucepan lid to drain !! Mainly to save time. But it backfired on me too . Last time I burnt my wrist. 
 

Hi there Kostakonkordia and Longroadhome, 

 

I hope you both have a lovely day. Thanks for popping by. Just woke up thinking: “ Oh, no, got another awful day to get through. “ Struggled to sleep last night because my breathing was so bad. I wake up totally exhausted every day anyway due to CFS, it doesn’t matter how much I sleep. I’m as exhausted when I wake up as when I go to bed. I’m still in bed. 
 

Kostas, my breathing problems aren’t due to withdrawals, my immune system attacks my lungs and I’ve got COPD from a lung injury. I’ve been in a flare now for five months. I was in remission for a month and a half before this flare. The vax triggered it. 
 

Longroadhome, yes, the steam from cooking can certainly burn. When I made a big pot of sweet potato to last a few days I realised it was too hard to drain the water with the lid because of all the steam, so I’d just ladle it out and put it onto a sieve. I really need to get a colander. 
 

I’m just lying here frozen to my bed, I’m frozen inside too, like why bother with anything today. I’m barely functional and struggling to breathe continues to bring me down to the depths of despair. My nerves are shot due to withdrawals, but on the bright side, my wave isn’t quite as intense today. Was going to drop by another 0.05% yesterday but my body isn’t ready yet. 
 

Don’t know if I can manage to get out of this funk. Might just be another day of binge watching a show to distract myself from everything. Life is hard!!🥲

 

Take care🧡🧡🧡

[kostakonkordia]

28 minutes ago, Carmie said:

Kostas, my breathing problems aren’t due to withdrawals, my immune system attacks my lungs and I’ve got COPD from a lung injury. I’ve been in a flare now for five months. I was in remission for a month and a half before this flare. The vax triggered it. 

Oh no. Shiit. You're symptoms cleared up completely? What kind of injury? Yeah better don't get the vaccine if you have a autoimmune issue. It's still not clear how it works... 

Edited February 21, 2022 by kostakonkordia

[Carmie]

Hey @kostakonkordia

 

A lot of people with autoimmune problems don’t have a problem with the vax. I think because my immune system only attacks my lungs I ended up in a flare. The last major flare lasted nine months after going to the dentist twice.
 

Lots of things can cause flares. I still recommend people getting the vax, I won’t be able to get boosters though as I’m still struggling to breathe from the vax. I’ll never have any hope of going into remission again if I continually get vaccines. I just have to live like a hermit. It’s just awful struggling to breathe all the time. 
 

The last flare settled for a month and half until this one that’s been going on for five months. I think my diet, plus the help from my natural therapist put me into remission.
 

My breathing was okay for that month and a half, but so many things cause flares. I’m on an autoimmune diet, which is anti inflammatory and good for the gut and digestion. Just ordered some bone broth, it’s very healing for the gut. It’s not my diet that causes flares, but other things. 
 

Well, I got up, had a shower and got dressed. It took so much effort as I hardly have any strength. I’m back lying down now. Can’t seem to get myself out of this dark hole.
 

Take care🤗

[NeDaytoDayMJ]

Carmie. I hope you feel better. I’m so saddened to hear of your suffering.   

[kostakonkordia]

50 minutes ago, Carmie said:

Hey @kostakonkordia

 

A lot of people with autoimmune problems don’t have a problem with the vax. I think because my immune system only attacks my lungs I ended up in a flare. The last major flare lasted nine months after going to the dentist twice.
 

Lots of things can cause flares. I still recommend people getting the vax, I won’t be able to get boosters though as I’m still struggling to breathe from the vax. I’ll never have any hope of going into remission again if I continually get vaccines. I just have to live like a hermit. It’s just awful struggling to breathe all the time. 
 

The last flare settled for a month and half until this one that’s been going on for five months. I think my diet, plus the help from my natural therapist put me into remission.
 

My breathing was okay for that month and a half, but so many things cause flares. I’m on an autoimmune diet, which is anti inflammatory and good for the gut and digestion. Just ordered some bone broth, it’s very healing for the gut. It’s not my diet that causes flares, but other things. 
 

Well, I got up, had a shower and got dressed. It took so much effort as I hardly have any strength. I’m back lying down now. Can’t seem to get myself out of this dark hole.
 

Take care🤗

May I ask what your dentist did? 

And what kind of lung injury did you have? 

Sorry I'm just curious and interested. 

Edited February 22, 2022 by kostakonkordia

[kostakonkordia]

54 minutes ago, Carmie said:

Hey @kostakonkordia

 

A lot of people with autoimmune problems don’t have a problem with the vax. I think because my immune system only attacks my lungs I ended up in a flare. The last major flare lasted nine months after going to the dentist twice.
 

Lots of things can cause flares. I still recommend people getting the vax, I won’t be able to get boosters though as I’m still struggling to breathe from the vax. I’ll never have any hope of going into remission again if I continually get vaccines. I just have to live like a hermit. It’s just awful struggling to breathe all the time. 
 

The last flare settled for a month and half until this one that’s been going on for five months. I think my diet, plus the help from my natural therapist put me into remission.
 

My breathing was okay for that month and a half, but so many things cause flares. I’m on an autoimmune diet, which is anti inflammatory and good for the gut and digestion. Just ordered some bone broth, it’s very healing for the gut. It’s not my diet that causes flares, but other things. 
 

Well, I got up, had a shower and got dressed. It took so much effort as I hardly have any strength. I’m back lying down now. Can’t seem to get myself out of this dark hole.
 

Take care🤗

Yeah I also heard that severe corona cases are a result of an autoimmune reaction... 

Have you tried low dose naltroxen? It's used for many inflammatory diseases. 

[Carmie]

On 2/22/2022 at 10:06 AM, NeDaytoDayMJ said:

Carmie. I hope you feel better. I’m so saddened to hear of your suffering.   

 

On 2/22/2022 at 10:41 AM, kostakonkordia said:

May I ask what your dentist did? 

And what kind of lung injury did you have? 

Sorry I'm just curious and interested. 

Hi there NeDaytoDayMJ and Kostas, 

 

Hope you’re baring up with all the trials we go through. 
 

Kostas, it was the chemicals the dentists use that caused the flare. My lung injury was due to accidentally inhaling hydrogen peroxide and burning my lungs. I don’t like to live in the past though, I can’t change it. All we can do is move forward and do the best we can in the circumstances we are dealing with now. 
 

NeDay, thank you for your beautiful words. I’m suffering so much from my struggling to breathe, it’s really bad. One hour at a time does it. I regret taking the vaccine that caused the flare that I’ve been in for five months, but at the same time I wanted to take it to protect me.
 

It was really a no win situation. I won’t be getting boosters though, I haven’t seen anyone for many months, except for dropping off some gifts to a friend’s children that live in walking distance from me. I stayed outside with my mask on. 
 

My brain fog is so severe and I can’t think straight to do a gratitude list today, but I want to say I’m soooooo grateful for my friends, they are such a blessing. 
 

Brisbane is going through floods at the moment and I’m sad for all those here that have had to evacuate, including three families and beautiful friends I know. 
 

There is a creek behind me that has now turned into a raging river. I went there yesterday in the pouring rain to check it out and the footbridge that went across the creek was underwater. Today I had a look again and the place I was sitting yesterday in the rain is now underwater too. The creek is well and truly a raging river.
 

The funny thing is, because I’ve not been able to go anywhere since the omicron craziness, due to my lungs, it’s nice to see a river nearby. I just feel sad for all the people who are suffering though from this deluge.

 

The other thing is I’m actually enjoying hearing the rain 24/7 as I love rain, but again my heart breaks for those that are suffering. So many houses having flood waters through them, plus a few lives lost. So sad. I never understand why cars are willing to drive through flooded waters???
 

Hoping to taper again in the next few days. 
 

Anyway, I’ll say bye for now. One day at a time, one hour at a time, one minute at a time. Life is hard. We all need to breathe freely, struggling to breathe is insufferable 🧡

[Carmie]

P.s. Going to have a rant today. It is soooo hurtful when people just disregard one’s suffering.
 

I don’t like to talk much about what I’m going through with people in the real world, but when I do and someone just skims right over it, it really does stab you in the heart. My close friends know what I’m going through though.
 

Had a beautiful chat with a friend this week and she was saying the same thing. She is also suffering from an autoimmune illness and trauma, like me. It’s nice to be able to talk to someone who understands. Off course she doesn’t understand withdrawals, but she still cares that I’m suffering from that as well. She doesn’t understand what it’s like struggling to breathe 24/7 either but she hears me and I hear her suffering. 
 

It is soooooo upsetting when people make such a big deal over trivial things, but when you are suffering they just skim over it. 
 

On the other hand, maybe I’m just making a big deal about it??? Maybe I’m wishing they can take my pain away when they can’t??? Maybe I’m wanting someone to rescue me when that is impossible??? 
 

Life is hard is all I can say. 

 

I’m so claustrophobic struggling to breathe. Breathing is important, you can’t settle when you’re struggling to breathe 24/7.

Anyway, enough ranting. Take care everyone 💛🧡

[Longroadhome]

Have a rant Carmie you’re entitled !! 
and I get what you mean. My friend and I were talking to another friend yesterday . Now my friends son has just passed away and we haven’t seen this friend until now. She just skimmed over the fact our friends son had passed  away and was telling us about her Uni work and how she has to stay in this weekend and can’t go out  socialising. Now this may have been because she didn’t know what to say but under the circumstances I didn’t feel what she said was appropriate and I felt annoyed. 

[Kostas]

I am really admiring you Carmie...

Sorry I cannot be of any help ..

In the end ,let's enjoy in life whatever can give us any joy and comfort  ,

and just keep going ,hoping that things will get better..

Best wishes 

 

[Carmie]

27 minutes ago, Longroadhome said:

Have a rant Carmie you’re entitled !! 
and I get what you mean. My friend and I were talking to another friend yesterday . Now my friends son has just passed away and we haven’t seen this friend until now. She just skimmed over the fact our friends son had passed  away and was telling us about her Uni work and how she has to stay in this weekend and can’t go out  socialising. Now this may have been because she didn’t know what to say but under the circumstances I didn’t feel what she said was appropriate and I felt annoyed. 

 

23 minutes ago, Kostas said:

I am really admiring you Carmie...

Sorry I cannot be of any help ..

In the end ,let's enjoy in life whatever can give us any joy and comfort  ,

and just keep going ,hoping that things will get better..

Best wishes 

 

Thanks guys, 

 

Hey there Kostas, nice to hear from you again. I was just chatting to another Kostas on here, actually Kosta, I think I called him Kostas in my post. Thank you for your kind words. 

 

It feels like my breathing is never going to settle, it’s been five months since the vax and I’m sooooo claustrophobic. The month and a half I was in remission before then was glorious.
 

It’s just so awful, no amount of words from anyone can soften the torment I’m going through.  I really wish I could go into remission, it looks like it’s going to take a very long time. I have so many caring friends, but in the end no one can take away what I’m going through, that goes for withdrawals as well. Everyone on here knows what that feels like. 
 

Having lots of friends that care but can’t help one is truly sad. My friends are always asking me what they can do to help, but there’s nothing anyone can do, thus we kind of live in our own little world that no one can reach. A world of suffering, a world where I wake up every morning struggling to breathe and feeling claustrophobic and thinking : “ Oh, no, not another day to get through. “ 

 

Hopefully the sun will shine again one day and I’ll be in remission again. 
 

Longroadhome, I’m sooo sorry for your friend’s loss, that must be absolutely heartbreaking. Yes, it would definitely hurt if someone didn’t show loving concern there. How sad to have lost a child. 
 

When we go through these distresses and yet the world around us carries on as if nothing has happened it’s disheartening. 
 

…. I just realised the rain has stopped for a bit. It’s been raining for days. We’ve got flooding everywhere here in Brisbane at the moment, it’s been raining really heavily and there’s more rain to come. Some of my friends had to evacuate and are staying with others. 
 

Anyway, I guess it’s bedtime soon, hope you both have a good week🧡🧡

[Carmie]

Okay, going to start the day with a gratitude list. Did enough ranting yesterday. When one’s nervous system is totally shot from trauma, sickness and withdrawals life can get too much.

 

Anyway, here goes: 

 

1. I’m grateful that all my friends are okay so far from the flooding we’ve had here💦💦💦. A few have had to evacuate but they’re doing fine. It’s actually not raining this morning, but more rain has been forecasted for the week.

 

2. I loooooove water💦💦💦😍 and it is nice seeing the small creek near me turn into a raging river, it hasn’t affected any homes in the suburb I live. I really would love a river out the back, minus all the flooding elsewhere. 
 

3. Kale chips. Yummy!😋 I make them with salt, onion and garlic powder. So good!

 

4. Clouds, love looking at clouds. Lots of clouds today☁️☁️☁️ It’s brighter outdoors today as it’s not pelting down rain at the moment. I love all weather, rain🌧 and sunshine☀️. We don’t get snow where I live, the last time I saw snow was when I was a teenager and living in Germany. 
 

5. The sound of my air purifier in the bedroom 🛌 at night time. It’s calming, along with my weighted blanket. It’s quite amazing how many appliances we have today that we can make use of. I don’t buy tons of stuff unless I use them, one thing I use all the time is my NutriBullet. Love it! 

 

6. My iPad. Good ol’ distractions. Can do so much stuff on it.📱I’m grateful for distractions. That’s all I seem to be doing lately, trying to distract myself. 
 

7. I’m still in bed and I’m grateful for the soft, comfy nightwear I’ve got on at the moment✨✨✨✨🌗

 

8. I’m grateful for home delivery📦, though I had a delivery guy just knock so intensely and yell so loud that I’m sure the whole neighbourhood heard🚪🤣. It was for a teeny tiny little parcel, one would have thought it had diamonds in it💎and that it was extremely important the way he sounded😂

 

It was just a little fidget toy for a few dollars. I got myself one as some friends were talking about fidget toys. I usually crochet when watching shows and movies on my TV, because my nerves are shot, but I wanted to see if I liked this fidget toy. If not, I’ll give it away.
 

9. I’m grateful for green tea and I think I’ll make a cup in a minute💚

 

10. I’m grateful for gratitude lists📝📝📝, for being able to focus on something positive even when it feels like your world is crashing down🌏
 

I’ve done research on toxic positivity too though, when one is going through stresses one can’t always pretend that things are going fine when they’re not. You feel even worse trying to pretend everything is fine when it’s not. There has to be a balance. 
 

Well, I’m going to go and have a cup of green tea now and get through the day as best as possible. Going to do some things to lift my spirits.

 

Have a good day one and all🧡🧡

[Carmie]

Just want to add one thing to my gratitude list from this morning: 

 

I looooove my fidget cube😍, I just took it out of the packet. So great to just have in your hand to play with while watching movies and shows when one’s nervous system is shot. It’s only small and easy to play with. There are things to push, twirl, slide etc. 

 

I really love it, I’ve never played with one before. Now I can crochet or fiddle with the fidget cube when watching my shows. 📺
 

Ever since going through withdrawals I can’t just sit there and watch something, I need to be doing something with my hands. Our poor CNS from these awful withdrawals.
 

Take care everyone 🧡

[hayduke]

Ah yeah the fidgetty dopamine thing!  I always did that a bit before getting drugged anyway.  I remember being glared at for drumming my fingers on the table during a recording session of some very boring speaker 🙂

[Carmie]

On 3/1/2022 at 10:51 AM, hayduke said:

Ah yeah the fidgetty dopamine thing!  I always did that a bit before getting drugged anyway.  I remember being glared at for drumming my fingers on the table during a recording session of some very boring speaker 🙂

Just dropping in to say I dropped down by another 0.05mg a couple of days ago, will put it in my profile down below when my CFS brain fog is a bit better. I’m not doing too well, struggling to breathe all the time has me in a dark hole. 
 

@hayduke Yes, good ol’ fidget toys. I was never a fidgety person before these meds though. 
 

Take care🤗