Carmie: accidently doubling up on Seroquel one day while tapering

[Kostas]

Hi Carmie, 

Enjoyed your description in the beach...

Thought I was there with you !

 Be well 

[Frogie]

@Carmie

 

I hope your taper goes well for you.

 

Take care,

Frogie xx

[Carmie]

12 hours ago, Longroadhome said:

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

 

Good morning Longroadhome, 

 

It’s nearly 10am, but I still haven’t had the strength to get out of bed as yet. I must take some food out of the freezer to cook today, I’ve got salmon steak and squid. I don’t eat grains so I can’t have crumbed calamari, I buy the squid tubes and cut them into rings. Yummy! If I do find a little strength to get some more groceries today I’ll do so this afternoon. If not, tomorrow will be the go. 
 

To answer your questions, I’ve had chronic fatigue syndrome since I was thirty, I’ll be sixty in a few more years.

 

As regards my autoimmune condition, I’ve had that for a couple of years. It attacks my lungs, nothing else for now. It’s not a good thing to be happening in the age of Covid. I don’t know if I would survive it, even with the vaccine. Let’s hope I don’t get it. 

I’m so sorry that your dad had chronic asthma, the poor thing. Struggling to breathe is so awful. Did inhalers work? Nothing works for my breathing, I’ve tried a number of inhalers. I can’t wait for this flare to settle. If it does settle within the next couple of months, then the booster shot will flare it up all over again. Not fun! 
 

Hope you have a nice day 🧡

[Colonial]

God Preserve You..

 

[Carmie]

12 hours ago, Kostas said:

Hi Carmie, 

Enjoyed your description in the beach...

Thought I was there with you !

 Be well 

 

6 hours ago, Frogie said:

@Carmie

 

I hope your taper goes well for you.

 

Take care,

Frogie xx

Hi there Kostas and Frogie, 

 

Yes, the beach certainly has a lot going for it Kostas, with all senses being activated. I loooooooove the 🌊🌊🌊🌊🌊

 

Frogie, thank you for your kind thoughts. I enjoy seeing all your encouraging messages on different one’s thread. You’re doing a marvellous job. Your Frogie avatar always makes me smile too, it’s so cute.

 

I tried putting a photo in mine, but the pixels or whatever are too big and I can’t put a photo in there. I don’t know how to shrink them so a photo can be put in there. I’m not very technologically minded, I just know the basics. 
 

Have a fab day 🧡

[Carmie]

Hi @Colonial

 

I was just replying to other messages on here when you messaged. Yes, my faith in my Creator certainly keeps me going. I love being out and about in his beautiful creation🌼🌸🌷🌹🌵🌴🌳☀️🌧🌊🍄

[Frogie]

@Carmie

 

I just love being able to pay it forward. After all the help I received here.

[Carmie]

On 11/22/2021 at 11:32 AM, Frogie said:

@Carmie

 

I just love being able to pay it forward. After all the help I received here.

That’s great Frogie, I’m so glad you got to make it to the other side of tapering and are giving back, you’re a gem💎
 

Okay, going to do a gratitude list for today:

 

1. Finally got an errand all sorted out. Paperwork! Paperwork! Paperwork! Red tape everywhere makes things so hard, especially with really important things. I finally got one of these important things done. Soooo relieved!!🎉🎉🎉🎉

 

2. One of my husband’s support workers helped us today, as my husband had to come with me to do this task. She’s great. We have three great external support workers for him now. 
 

Yesterday, one of them took my husband to the beach🌊🌊 I was too sick to join them, but I’m grateful that my husband is able to get out and about every week. 

 

3. I’ve been stuck lying down a lot, so I’ve been watching lots of Blue Heelers👮‍♀️. Great Aussie show. I’m only into season three, each season has so many episodes. I will still be watching the series for ages. 
 

4. I’ve managed to hire a portable rife machine from my natural therapist for a month. It’s hard to hire off him, as so many others want them, and he only has a few. Very happy I got one for a month👍
 

They’re really expensive, I’d love to buy one one day. They help with killing candida, parasites etc etc. They work great. 
 

5. I’ve just come home from my errand and I’ve crashed on the couch. I’m grateful for my couch🛋

 

6. Yesterday I had some yummy rockmelon and watermelon. My treat is fruit🍉🍉 Finished of the bit of rockmelon I had left  just before

 

7. Made some calamari yesterday, there was enough left over for today. So yum!😋😋

 

8. I’m soooo grateful for my friends, they are always there for me. I just have to ask for something and they help no problem at all. They are wonderful👱‍♀️👩🏻‍🦰👱🏽‍♂️👨🏽🧑🏿👵🏻👨🏼‍🦳👩🏻‍🦳🧔🏽🧑‍🦳👩‍🦱

 

9. It’s raining at the moment. Love the rain!🌧🌧

 

10. Chilling. That’s what I’m going to do now. Just chill and watch some Blue Heelers📺 The errand this morning was so stressful, and I’m so grateful I can chill now. 
 

I’m trying to hard to stay as positive as I can, it doesn’t always work, and I end up in tears at times as struggling to breathe is awful. 

 

I also had restless arms last night, no doubt Akathisia, but it was only my arms. It was hard to settle. That doesn’t happen very often though as I’m tapering slowly. Having full blown Akathisia is one of the worst things I’ve ever experienced. I still get internal Akathisia here and there too, but it’s bearable. 
 

Okay, time to chill 📺☕️
 

Sending hugs🤗

[Rosetta]

(((Carmie))). Thinking of you! -Rosetta

[Carmie]

On 11/23/2021 at 7:35 PM, Rosetta said:

(((Carmie))). Thinking of you! -Rosetta

Hi there Rosetta,

 

Hope you survived the day okay today, sending hugs to you too.

 

Time for a gratitude list:

 

1. It’s been raining quite a bit this afternoon. Love the rain💦💦💦 We get no rain for ages, and then all of a sudden we are getting heaps of it, day after day. It looks like there’s lot more on the horizon.🌧🌧

 

2. Got to see my natural practitioner again yesterday. He’s really good. It takes me two hours⏰to get there and two hours back. I’m more than happy to do that on days I have the strength to do so. He had a client the other day that flew down and back from Mackay just to see him and she was going to do the same thing in a fortnight. She must really be happy with him😁
 

I love train rides, so that’s a highlight there too🚂. I find them really relaxing, the movement and the noise are peaceful to me. 
 

3. I’ve been doing some crosswords this week, love them!🖊🖊🖊 It’s really hard for me to read or do crosswords, or anything like that, when my CFS brain fog is severe, so I’m always happy when I can think through the fog🧠👍

 

4. My tv in the bedroom started behaving again, so I’ve been watching the old Starsky and Hutch series📺 It wasn’t working properly, so I haven’t used it in months. Thought I’d just check today, and Lo and behold I can play DVDs again💿💿💿

 

I don’t know if it will misbehave again in the future, but today I’m grateful it works👏👏👏I haven’t checked if the actual tv channels work, as that’s what the problem was. It automatically changed channels non stop and it wouldn’t let me use the source button to get to the DVD 📀playing.
 

I tend to watch DVDs in the bedroom, not much tv, so I’m not going to risk seeing if the TV part works, in case it wrecks the DVD playing again. Because there’s no antenna attached to it now I didn’t see the channels. Let’s see if I can still play DVDs tomorrow.

5. Put together a nice bouquet of fake flowers 💐for a friend’s mother who is in a nursing home. I usually buy real flowers for her, but I thought it would be nice to have a bunch that lasts.
 

It was fun putting it together🌼🌸🌺🌷 and it makes me so happy to do nice things for others. I’m grateful that we all have the gift of giving to others, there really is a lot of happiness in it. 
 

6. I managed to do a bit of decluttering today. Yes, it really is one of my favourite things to do. I don’t like having lots of stuff, my mind feels so cluttered when there’s too much stuff. 
 

I’d like to do a decluttering challenge again. There are a few on YouTube. Bye stuff!👋👋 Today, I went through my clothes and I’ve got a bag of clothes to give to a friend. I’m always decluttering my clothes👗, if I haven’t worn something for a number of months I can’t see the point in keeping it. It’s not an ornament😄

 

It’s nice to go to one’s cupboard and actually have every item in there that you like to wear. I don’t own a ton of clothes, but what I do own I wear. Some people have millions of clothes, but they only wear like a tenth of what they own. I say get rid of the rest. Come on! You can do it!😂😂😂

 

7. Had some yummy watermelon again today🍉🍉🍉

 

8. I’m lying on my comfy bed, with my Himalayan salt lamp giving off a warm glow✨✨✨, my fan delivering a delightful breeze, the rife machine I hired doing it’s job and I’m ready for the next episode of Starsky and Hutch in a minute.

 

9. A friend asked if there was anything I needed. Love my friends🧡

 

10. I’ve been doing some crocheting too🧶🧶It helps me relax. I’m trying hard to divert the focus away from my breathing problems. 
 

Take care🧡

[Carmie]

Just thought I’d do my gratitude list for today. Doing my best to keep my chin up. 
 

1. I did a little bit of decluttering of a couple of boxes in the spare room.📦📦 Love decluttering, even if it’s just a little. 
 

2. A friend popped over with a delicious red papaya, or as we call them in Australia, pawpaw. I love fruit🍑🥭🫐🍓🍉🍐🍎

 

3. Today I gave my friend all the clothes I decluttered this week👗🧥.  I love getting rid of stuff I don’t use or wear, it makes me happy😁 This particular friend always ends up with the clothes I don’t wear anymore, she made me laugh today when she said: “ Are you sure you have any clothes left? “🤣 

 

4. Another friend of mine wants to have a little catch up in a week or so. I haven’t chatted to her in quite a while, she’s such a sweetie and I’m looking forward to having a chat🧡 I haven’t caught up with a lot of people lately as I’ve been really struggling to breathe, and have just been in survival mode. 

 

5. My sis in law just rang and we had a bit of a chat☎️
 

6. My husband’s support worker took him to the beach today🌊🌊 He has fabulous support workers. 
 

7. I got a new umbrella this week. My old one had fallen to bits, but I kept procrastinating about getting another. It’s been raining quite a bit lately though🌂🌂🌧 I love walking in the rain in summer☀️☀️, but my phone etc don’t like it📱😁

 

The other night there was such a heavy downpour, and I went downstairs on purpose to take the garbage out and get drenched. It was glorious, I love getting drenched by the rain when the weather is warm💦💦💦💦 I don’t do that in winter though😁

 

8. I got a new notebook📒today. I need some kind of organisational system, I really haven’t had a proper organise my life system in a while. I have to get back onto that. When you’ve got a million things on your mind it’s good to get these things down in some kind of system, so you don’t feel so overwhelmed. This notebook has pockets that I can put things into there as well.

 

For next year I’ve already got a diary and a big calendar, but I need a notebook 🖊🖊or other system to put down daily thoughts etc that clutter my brain. Today I wrote a list📝 of my friends I want to contact in the next week or so. 
 

9. I’m trying to think of what else I’m grateful for today. Hmmm🤔 Oh yes, I got an artificial plant. I love artificial plants🌿🌿🌿, they’re great when you’re sick. They don’t need taking care of. Just a little wipe every now and again. I only buy ones that look real, I don’t like ones that look like plastic. I’ve got some real plants on the windowsill in the loungeroom.

 

10. I managed to wash some clothes, and even put them away🧺 I’ve got more to do tomorrow if I’m well enough. No matter how I’m feeling, if I wash my clothes now I really try and put them away straight away. If I leave them in the basket they get really wrinkly and that’s more work then.
 

Well, I did it it. Another gratitude list down, it’s nearly time for bed. 
 

Good night😴😴😴

[Carmie]

Haven’t managed to get out of bed as yet, but thought I’d do an early gratitude list, so here goes: 

 

1. I have a comfy bed.🛏

 

2. I love my weighted blanket, I’ve had one for years. It helps comfort me when I’m trying to sleep😴😴

 

3. I’m grateful I have food🥑🫒🍠🥩 🥦🧅

 

4. I’m grateful we’ve had rain recently 💦💦💦

 

5. I don’t have much strength today, but I’m hoping to finish my washing if I find a teeny tiny bit of energy🧺. I’ll be grateful once it’s done. If I can’t do it today, I’ll be happy that it will get done in the next few days. 
 

6. My husband had another fall🤭 in the middle of the night, the nurses informed me. I’m grateful he didn’t break anything. He dislocated his shoulder a couple of months ago, and also broke his hip once. I’m sooooo glad nothing is broken

 

7. I’m happy my husband lives in a care place with such amazing staff. They are so kind and caring, and may I add extremely efficient. They are wonderful🧡

 

8. I’m grateful for distractions. I need lots of them lately, dealing with WDs, as well as struggling to breathe 📖📚📝🖊💌📮🎼🌊🧶📺📸

 

9. Got a lovely message from a friend. I’m so happy to have so many wonderful friends🧡🧡🧡

 

10. DVDs. I love having the movies n shows I like on DVD, so if they aren’t on Netflix or another streaming platform I can still watch them📀📀📀📀

 

Another ten gratitudes done.

 

Not sure how I’ll go today, my body is so weak. My breathing isn’t great, but it’s bearable. I’ll decide what I’ll do for distractions an hour at a time, a lot of it depends on my CFS brain fog. If I didn’t have that, I’d be reading all day long📚📚📚📚📚📚📚

 

I might watch some YouTube videos in a minute. I really like YouTube, so much info on pretty much anything. What did we do before Google and YouTube? Encyclopaedias anyone?🤣

 

I am really struggling with my health, and I was teary again yesterday, but we can only live each moment as it comes, and that’s what I’m trying to do. 
 

Take care one and all🧡

[Carmie]

Having a total meltdown this afternoon, everything has gotten on top of me. Bawling my eyes out. I’m struggling with my breathing, WDs have ramped up, I’m stuck in bed due to CFS and I’m barely functional. 

 

I’ve got so much stuff to do, and it’s hard keeping on top of everything.  I’ve got lots of administrative stuff I still have to do and I’m just too sick to do it. So much paperwork etc to do in the care of my husband. It’s never ending. I always end up managing to do it, but I get so overwhelmed at times.
 

 My husband having another fall last night upset me too. I’m glad he didn’t do too much damage this time though. His skin on his arms is so thin though, and he got a major tear on his forearm, he did it with the walker. 
 

Because of my lungs, the COPD and my immune system trying to destroy them, I don’t know what my chances of survival would be if I ever got Covid. Death doesn’t worry me whatsoever, I don’t really have any fear of death, but suffering does. I need to be here to help my husband too.
 

My breathing problems have really ramped up due to the vaccine and the antibodies it produced. Imagine what Covid would do to me. The thing is I would probably end up in hospital, that’s what really scares me. I won’t have the chance to take my meds, especially if I end up in ICU. They aren’t going to taper the Seroquel for me. I’m afraid of full blown Akathisia, on top of struggling to breathe. 
 

Thanks for listening, I needed to get that off my chest as I’m so upset this afternoon. I also prayed about it while bawling my eyes out, I always find comfort in praying about anything I’m going through. My health has really gotten the better of me today. I think struggling to breathe has really made things hard. 
 

Hope everyone is surviving all the things they’re going through. Life is hard🧡

Edited November 27, 2021 by Carmie
Clarification

[Longroadhome]

@Carmie my heart goes out to you. 
Is there a Doctor or anyone you can talk to? 
 

[Carmie]

Just now, Longroadhome said:

@Carmie my heart goes out to you. 
Is there a Doctor or anyone you can talk to? 
 

Hi Longroadhome, 

 

Thanks for your kind message. 

 

The doctors couldn’t do anything. Puffers don’t work, so I have to just wait until the flare goes down. One day at a time does it. 
 

I have a meltdown every now and again, and then I pick myself up again and keep plodding along. The last flare lasted nine months, though I had days of reprieve here and there. I think I actually had a total week of reprieve once, but then it just flared up again, it wouldn’t settle. This nine month flare was triggered by the dentist. It must have been some of the chemicals.
 

My problem is that if the flare I’m in now settles within the next few months, it will just flare up again when I have to get the booster shot. It’s because all vaccines produce antibodies, and antibodies think my lungs are something to attack and destroy. 
 

Oh well, I’m just going to keep taking an hour at a time. I’ve settled a little bit now. A friend just rang before and we had a good chat. I’m going to try and relax now. 
 

I’ll have to keep up my gratitude lists and continue to look for the good things in my day😁 I did one this morning and then had a total meltdown this afternoon😂😂

 

Take care, have a lovely day🧡
 

 

[Longroadhome]

You’re allowed meltdowns @Carmie and sometimes we need to vent and stop bottling things up so that’s a positive . 
Where has the admin come from do you work Is there anyone you can trust to help get through it ? 
Falls happen easily as we get older and the medication your husband is on probably contributes to the skin condition. It’s a viscous circle. That said it’s good  that he didn’t do much damage it could have been a lot worse.  He will heal. 
 

Try not to worry about things that haven’t happened like COVID, going into hospital and meds not being administered. You’re getting ahead of yourself and there’s no sense in worrying about “what if” situations it’s unproductive and an additional drain on energy when they probably won’t happen anyway. Just try to take things one day at a time and if you accomplish a small task then good but if you can’t manage anything then rest and wait that’s all you can do and this may  conserve  a little energy for some productivity down the line. 
 

You've been in this situation before with your breathing and it did improve so there’s no reason It should be any different this time. as long as your taking good care of yourself with nutrition and rest. 
 

You have good friends around you so don’t be afraid to ask for support just until you feel more able to take over and do things for yourself.
 

Your such a lovely caring thoughtful person. Better days will come.
Sending a special ((((hug)))) from

me to you
 

 
 

 

[Carmie]

4 minutes ago, Longroadhome said:

You’re allowed meltdowns @Carmie and sometimes we need to vent and stop bottling things up so that’s a positive . 
Where has the admin come from do you work Is there anyone you can trust to help get through it ? 
Falls happen easily as we get older and the medication your husband is on probably contributes to the skin condition. It’s a viscous circle. That said it’s good  that he didn’t do much damage it could have been a lot worse.  He will heal. 
 

Try not to worry about things that haven’t happened like COVID, going into hospital and meds not being administered. You’re getting ahead of yourself and there’s no sense in worrying about “what if” situations it’s unproductive and an additional drain on energy when they probably won’t happen anyway. Just try to take things one day at a time and if you accomplish a small task then good but if you can’t manage anything then rest and wait that’s all you can do and this may  conserve  a little energy for some productivity down the line. 
 

You've been in this situation before with your breathing and it did improve so there’s no reason It should be any different this time. as long as your taking good care of yourself with nutrition and rest. 
 

You have good friends around you so don’t be afraid to ask for support just until you feel more able to take over and do things for yourself.
 

Your such a lovely caring thoughtful person. Better days will come.
Sending a special ((((hug)))) from

me to you
 

 
 

 

 Thanks for your kind words Longroadhome, 

 

I think it’s the neuro-emotions from the withdrawals today that have made me so emotional. I’m a really positive person by nature.
 

No, I don’t work, I’m on a disability pension. The admin stuff lately has been lots of paperwork to do with my husband etc. It doesn’t seem to end. It’s just that with CFS brain fog everything can get really hard, I struggle to even read a lot of the time. I’m slowly getting on top of the paperwork, there’s not a lot left to do, it’s just been really stressful. I’ve also had to do a ton of running around and that hasn’t finished as yet either. I will get back to some kind of equilibrium again. 
 

I ended up writing a list of all the things I need to do. I got them out of my head and into my new notebook. That helped. I need to be a bit more organised and put more stuff down on paper so it’s not always swirling around in my head. 
 

We haven’t had any community transmission of Covid here in quite a while, but the borders might be opening more soon. Covid wouldn’t worry me if I didn’t have my lung issues. That being said, not everyone gets it anyway. Like you said, it might not even happen.

 

I think I’ve just had too much on my plate lately, and my health being so bad has really stressed me. I have to get back into some kind of self care routine. My brain is racing at a million miles an hour. My nutrition is great, I don’t eat any junk food, gluten, grains, dairy, sugar, legumes, nuts and seeds, additives or preservatives etc These are all things that can cause inflammation in autoimmune disease. 
 

I need to get back into having epsom salt baths, going and sitting downstairs on the grass in the morning and grounding, going for short walks that don’t include doing errands, chilling on the balcony with a cuppa , spending less time staring at screens, ringing my friends and having nice chats. My brain is actually allowing me to do crosswords this evening. Yay!🎉I find them relaxing.
 

I do have amazing friends, I’m so grateful for that. I just had another one contact me, wanting to catch up soon. One of them was asking what they could for me, and I accepted some help. They are going to help me with a few things. A lot of the time I’m like: “ It’s okay, I’ll be fine.” I’m slowly learning not to do that and accept help.

Thanks again for your very kind words🧡

[Cheeky]

@Carmie

I hate knowing your suffering like this and I’m sorry you have to endure this living alone. You have always pulled yourself out of this and you will again. If you need a phone friend and want to talk to someone I’m here and will send you my number I’m just a phone call away .

Try not to worry about things that hasn’t happened , it’s just wasted energy and will cause you more aniexty. When I’m not feeling good I too tend  catastrophes everything and it just makes me worry more. I really wish you lived closer as I would try to help you out. 
Your such a beautiful soul 🦋

Were are all here for you xx

[hayduke]

(((((❤️)))))

 

You can find tapering support in the hospital and help titrating anything you need... before writing your next gratitude list you could write down simple clear instructions on how to prepare your dosage even with a paper cup and syringe.  

 

Especially with phone numbers to supportive GP etc to ensure you don't cop any destabilising nonsense.

 

xo

[hayduke]

And yeah take all the time soaking in the bath and chilling out to not even get there you need eh

[Carmie]

8 hours ago, Cheeky said:

@Carmie

I hate knowing your suffering like this and I’m sorry you have to endure this living alone. You have always pulled yourself out of this and you will again. If you need a phone friend and want to talk to someone I’m here and will send you my number I’m just a phone call away .

Try not to worry about things that hasn’t happened , it’s just wasted energy and will cause you more aniexty. When I’m not feeling good I too tend  catastrophes everything and it just makes me worry more. I really wish you lived closer as I would try to help you out. 
Your such a beautiful soul 🦋

Were are all here for you xx

Hi Cheeky, 

 

Thank you for your kind offer, I actually have lots of friends and support, but that’s so sweet of you. I have trouble keeping up with all my friends. A couple got in contact with me yesterday, and others have contacted me as well, but I haven’t always answered the phone as I was too sick at times to chat. I just message them back.
 

One of my really close friends just moved into a new place, and she wants me to come and visit. I’ll have to do that soon. She’s such a sweetheart, we’ve had lots of fun times together. We might go for a beach holiday together next year some time.
 

Recently I wrote a list of my friends I want to catch up with again in the near future. Except for going out with my husband and his support workers, I think I’ve turned into a little hermit. I’m an extrovert, but since struggling to breathe I just seem to be in survival mode and using distractions to help me to cope. 
 

In the Myers Briggs personality test I’m an ENFP, which is an extrovert, but the one extrovert that needs a lot of alone time too. I ended up having a laugh with a friend yesterday, she’s an introvert, and I told her that lately I’ve become a hermit like her🦀😂 I need to come back out of my shell.
 

 One friend yesterday asked me if they could get me anything while they were out and about, which was very kind of them. I’m slowly learning to accept help, I’ve always been a giver, but when it comes to asking for help I sometimes find that hard. I’m a work in progress, like all of us. 
 

I hope you’re doing okay Cheeky, have a nice day🧡

[Carmie]

7 hours ago, hayduke said:

(((((❤️)))))

 

You can find tapering support in the hospital and help titrating anything you need... before writing your next gratitude list you could write down simple clear instructions on how to prepare your dosage even with a paper cup and syringe.  

 

Especially with phone numbers to supportive GP etc to ensure you don't cop any destabilising nonsense.

 

xo

 

7 hours ago, hayduke said:

And yeah take all the time soaking in the bath and chilling out to not even get there you need eh

Hi there Hayduke, 

 

Thanks for your advice. I didn’t know that hospitals will taper things for you. Are you sure? They’re always really concerned about any meds someone takes as they can be liable if something goes wrong. Do you think a letter from a doctor would help? 
 

I always carry a mini mortar and pestle in my bag, as well as syringes. My concern is too if I ended up in ICU I wouldn’t be able to tell anyone what I need. I need to stop catastrophicing ( is that how you spell it?😁) I think the neuro emotions from theses meds have really played havoc with me lately. What I’m worrying about probably won’t even happen. 
 

I need to get some kind of emotional equilibrium back. FasterEFT has always helped me in the past, but I just seem to be in freeze mode and I’m not doing the things I need to do to help myself. I’ve had a million errands etc lately to do, and once I’ve done those I don’t seem to have anything left to take care of myself. This has to stop!!!! I need to start taking care of myself too.

 
Journaling helps me too, but I’ve only been doing a little here and there. I need to really do that on a daily basis too. 
 

Yes, I definitely have to get back into doing epsom salt baths again too and other self care things as well. Come on Carmie, you can do it! 
 

Have a happy day Hayduke, and thanks again🧡

[hayduke]

1 minute ago, Carmie said:

 

Hi there Hayduke, 

 

Thanks for your advice. I didn’t know that hospitals will taper things for you. Are you sure? They’re always really concerned about any meds someone takes as they can be liable if something goes wrong. Do you think a letter from a doctor would help? 
 

I always carry a mini mortar and pestle in my bag, as well as syringes. My concern is too if I ended up in ICU I wouldn’t be able to tell anyone what I need. I need to stop catastrophicing ( is that how you spell it?😁) I think the neuro emotions from theses meds have really played havoc with me lately. What I’m worrying about probably won’t even happen. 

 

Being prepared for things reduces the worry I lot, I find.  

 

If you showed up at a hospital, they should have an emergency contact for you anyway right, that person could instruct the staff.  If they know you have a prescription at all you should be able to have that information amended with your need for tapering.  A supportive GP would be ideal.

[hayduke]

6 minutes ago, Carmie said:

I need to get some kind of emotional equilibrium back. FasterEFT has always helped me in the past, but I just seem to be in freeze mode and I’m not doing the things I need to do to help myself. I’ve had a million errands etc lately to do, and once I’ve done those I don’t seem to have anything left to take care of myself. This has to stop!!!! I need to start taking care of myself too.

 

EMDR worked for me.  It strikes me as being more substantial and going deeper than the EFT stuff.  YMMV as always

[Carmie]

2 minutes ago, hayduke said:

 

EMDR worked for me.  It strikes me as being more substantial and going deeper than the EFT stuff.  YMMV as always

I’ve never tried EMDR, might be worth a go. 
 

FasterEFT works really well too, it’s different to normal EFT. I doesn’t work though, unless you do it😂

 

Here’s to getting back into self care🧡

[Cheeky]

36 minutes ago, Carmie said:

Hi Cheeky, 

 

Thank you for your kind offer, I actually have lots of friends and support, but that’s so sweet of you. I have trouble keeping up with all my friends. A couple got in contact with me yesterday, and others have contacted me as well, but I haven’t always answered the phone as I was too sick at times to chat. I just message them back.
 

One of my really close friends just moved into a new place, and she wants me to come and visit. I’ll have to do that soon. She’s such a sweetheart, we’ve had lots of fun times together. We might go for a beach holiday together next year some time.
 

Recently I wrote a list of my friends I want to catch up with again in the near future. Except for going out with my husband and his support workers, I think I’ve turned into a little hermit. I’m an extrovert, but since struggling to breathe I just seem to be in survival mode and using distractions to help me to cope. 
 

In the Myers Briggs personality test I’m an ENFP, which is an extrovert, but the one extrovert that needs a lot of alone time too. I ended up having a laugh with a friend yesterday, she’s an introvert, and I told her that lately I’ve become a hermit like her🦀😂 I need to come back out of my shell.
 

 One friend yesterday asked me if they could get me anything while they were out and about, which was very kind of them. I’m slowly learning to accept help, I’ve always been a giver, but when it comes to asking for help I sometimes find that hard. I’m a work in progress, like all of us. 
 

I hope you’re doing okay Cheeky, have a nice day🧡

I’m so happy you have support and you have all of us here too. 

[Rosetta]

Hi, Carmie.  You seem pretty overwhelmed.  I’m glad you have friends irl.  That’s so important.  Thank you for your sweet note on my thread. I wish there were something I could say to help you right now. R

[direstraits]

I'm sorry you're suffering like this 😔

You're such a lovely person ❤️

You're in my thoughts and prayers 🙏🤗

[Carmie]

On 11/28/2021 at 9:18 AM, Rosetta said:

Hi, Carmie.  You seem pretty overwhelmed.  I’m glad you have friends irl.  That’s so important.  Thank you for your sweet note on my thread. I wish there were something I could say to help you right now. R

 

On 11/28/2021 at 11:26 AM, direstraits said:

I'm sorry you're suffering like this 😔

You're such a lovely person ❤️

You're in my thoughts and prayers 🙏🤗

Hi Rosetta and direstraits, 

 

Thanks for your lovely messages. Yes, I am overwhelmed, struggling to breathe all the time makes me so claustrophobic, it’s really awful. There’s nothing that relieves it. 
 

Nonetheless, I’m going to write a gratitude list today, here goes:

 

1. I went for a mountain drive yesterday, up to Mount Tambourine. We chilled at the botanic gardens there, so pretty. There’s a little lake and rainforest and flowers. Everything was so lovely and green. A glorious spot.

 

2. Went for a little walk along Gallery Walk there too, there are lots of cute little shops. I love looking at handmade things. 
 

3. Got lots of lovely messages from friends. 
 

4. It was raining today, love the rain. 
 

5. Got a couple of items I needed from the shops today. I’m a real procrastinator when it comes to getting things that I need. I’ve always been a make do person.

 

6. Had some yummy fruit today and yesterday. Had the most delicious mangoes yesterday. 
 

7. It was nice taking photos at the botanic gardens. I love taking photos, but lately I haven’t taken many as I’m just in survival mode with my breathing. Taking photos makes me happy though. 
 

8. The swelling in my leg is going down. Silly me slipped in the bathroom the other day, I was cleaning the bathtub and I bent down afterwards as the tap was still dripping and I slipped as the floor was slippery from the cleaner I was using. 
 

It’s a natural cleaner as I can’t use chemicals and it had some oils in it. I didn’t realise there was some on the floor. Anyway, I fell onto the shower railing as there’s a shower attached to the bathtub. I had such a massive lump, but I wasn’t in any pain. I still have massive bruises, but no pain at all. I’m grateful I didn’t do more damage. 
 

9. I’m grateful that I have a comfy bed. I spend a lot of time in it so it’s great that it’s comfy. Also, love my weighted blanket. 
 

10. I’m grateful to have the internet to find topics on every known subject. 
 

Well, that does it for today. 
 

Hope you’re both having a good day🧡

[Colonial]

I love your gratitude lists. 😊

 

They are not just a view into your world, they are a view in how to train the brain to see everything in multiple ways, which is, I think, a great way in helping brain fog or other cognitive issues.

 

 

 

[Carmie]

11 hours ago, Colonial said:

I love your gratitude lists. 😊

 

They are not just a view into your world, they are a view in how to train the brain to see everything in multiple ways, which is, I think, a great way in helping brain fog or other cognitive issues.

 

 

 

Yes, gratitude lists are certainly helpful, even when one is really struggling Colonial, 

 

I thought I’d do one this morning before my day has really started. I wake up every morning struggling to breathe and it’s really scary, so I want to think of some things I’m grateful for, so here goes again. 
 

1. It’s pouring down rain outside. I love it!

 

2. I’m catching up with friends this morning. I’ve been hibernating quite a bit as I’m just in a kind of survival mode because of my breathing problems. My friends keep contacting me, so I thought it’s time to get more social despite all. 
 

I do go out all the time with my husband and his support workers though, so I haven’t been a total hermit.

 

3. I’m just going to have a day chilling today. Lately I’ve had so many errands to run and my brain has been going at a million miles an hour. I’m grateful for a chill day. 
 

I have to make a number of phone calls to organise different things, but besides that I might just have a cruisy day. 
 

4. I just switched on my fairy lights and Himalayan salt lamp in the bedroom. It makes for nice atmosphere. 
 

5. The rife machine I’ve hired for a month is still busy working away on my health. 
 

6. I have to say again, it was really nice taking photos at the Mount Tambourine botanic gardens yesterday. I love taking photos, but I haven’t taken many lately. I must get back into it.

 

7. I’m grateful I have food in my fridge. 
 

8. I’m grateful I have electricity. 
 

9. I’m grateful I have running water. We can take a lot for granted. 
 

10. Im grateful I have a roof over my head. 

 

Have a happy day☀️☀️☀️☀️

 

[Carmie]

Time for my gratitude list📝

 

1. It was nice spending time with friends yesterday morning for a while. Friends are the best!🧡

 

2. I’m hoping to go to Caloundra tomorrow, it’s at the beach🌊🌊🌊🎉🎉 We have been having lots of rain, but it looks like a sunny day tomorrow ☀️☀️

 

3. I managed to do all my washing today. Woohoo!🧺🧺

 

4. Had a delicious lunch😋. I started intermittent fasting again yesterday and I didn’t actually have lunch until 2pm today. I think it was 3pm yesterday. My blood sugar levels are always really stable, no doubt due to my diet, plus intermittent fasting. 
 

I don’t eat breakfast anyway, and usually eat my first meal 🥗🥘 around noon or afterwards. I’m not hungry at all in the morning, and most of the time it’s already 1pm before I realise I feel like eating something.
 

I’m eating within an eight hour window at the moment, though I usually eat within a five or six hour window when I do IF. I’ve done lots of IF, I’ve done it for over a year non stop at a time, so it’s easy just getting back into the swing of it.

 

My only concern is losing weight, that’s why I’m giving myself an eight hour window. I have to make sure I eat enough, as I’ve already lost lots of weight on the autoimmune protocol diet. I’m  about 55kg or so now, which is okay, but I don’t want to lose anymore. Intermittent fasting has so many benefits though, so I really, really wanted to start it again. 

 

If I can manage to keep my weight stable and not lose anymore, I might shorten the eating window again.

5. Been watching lots of great, informative YouTube videos📺

 

6. Have a beach holiday booked for January 🌊🌊🌊

 

7. I love comfy house clothes, got some comfy ones on at the moment🩳 I need to get a few more though, so if I’m too sick to wash for a while I won’t run out.

 

8. I’m lying on my comfy bed🛏, with the delightful breeze of the fan happening.

 

9. I love water, it’s my favourite drink. I’ve had lots of it today. I really love soda water n other bubbly water🥤One of these days I’m going to get a soda stream so I can make my water bubbly😁

 

10. Received some CDs in the mail this week from EBay. I do use Spotify, but I still love having CDs too.📀📀📀📀

 

Well, that’s another gratitude list done and dusted. 
 

Hope everyone is coping as best they can🧡

[Carmie]

Good morning everyone, 

 

I’m grateful I’m off to the beach today, very happy🌊🌊🌊🌊🌊🌊🌊🌊🌊 I’ve got my board shorts on and I’m all set for a swim. I’ve been to the beach a few times recently, but I haven’t been swimming as yet. It looks like it’s going to be a lovely day for a dip in the water. I’m going to grab my boogie board. 
 

Continuing to do things I love. 
 

I really want to incorporate self care into my daily life again. Was going to start having epsom salt baths 🛁 a couple of days ago, but I’ve been procrastinating about it. I will do it though. I’ve got sooooo many packets of Epsom salts in my cupboard, they won’t do anything unless I use them😁
 

I’ve got lots of self care habits I want to incorporate. Started intermittent fasting a couple of days ago again. It’s so good for my digestion.
 

I also did a little bit of dry skin brushing yesterday to get my lymphatic system moving. I’d like to make that a daily habit. I’ve had the brushes for ages, but haven’t gotten around to using them either. 
 

It’s time to get some good habits into place. One habit at a time does it, the intermittent fasting is number one, though it won’t take long to make that a habit as I’ve done lots of it in the past for really long periods of time. 
 

Another thing I’d like to do in the future is not reach for technology first thing in the morning, it’s such a bad habit. I do it for distraction first thing in the morning as I’m struggling to breathe and my nervous system is shot from withdrawals. I would like to use a better distraction than that though, maybe do some arts and crafts, crosswords etc

 

Take care everyone 🧡

[Rosetta]

Ah, enjoy your Summer. Carmie!

[NeDaytoDayMJ]

I’m jealous.  It did get to 70 degrees here in Nebraska though.  Rare for December!

I’m going to take an epsom bath right now.  It sounds spectacular.  

[Carmie]

On 12/3/2021 at 12:11 PM, Rosetta said:

Ah, enjoy your Summer. Carmie!

 

On 12/3/2021 at 12:44 PM, NeDaytoDayMJ said:

I’m jealous.  It did get to 70 degrees here in Nebraska though.  Rare for December!

I’m going to take an epsom bath right now.  It sounds spectacular.  

Hi there Rosetta and NeDaytoDayMJ, 

 

Thanks for popping around to my neck of the woods. Yes, summer has arrived here☀️☀️☀️☀️
 

Enjoy your epsom salt bath @NeDaytoDayMJ

 

I hope you’re both having a good day. 
 

I’m trying hard to continue to keep my chin up during this autoimmune flare from the vaccine. It’s been over two months since I’ve been really struggling to breathe. Nothing relieves it. 
 

I’m going to write a gratitude list nonetheless, so here goes again: 

 

1. It was lovely going for a swim this week. I was having fun in the waves with my boogie board. The water was really warm. You know how you usually have to get acclimatised to it, no need for that. Just jumped right in. 
 

2. The sand was glorious, it was so white. 
 

3. We sat near a restaurant overlooking the water for a while and got live music. Bonus!

 

4. I went for a walk on the rocks too, I love watching the waves crash on the rocks. 
 

5. Just had some delicious smoked salmon. Also bought some yummy sardines in extra virgin olive oil. Good ol’ omega 3s.

 

6. Just been drinking soda water, loooove fizzy water. 
 

7. Caught up with friends again yesterday.

 

8. Had some rockmelon. 
 

9. Catching up with friends again tomorrow. Coming out of my hermit shell. Haven’t been feeling too sociable struggle to catch my breath every day. 
 

10. Hope. There’s always hope, no matter what we are going through. My autoimmune disease is permanent, and struggling to breathe is really getting me down, but hopefully I’ll come out of this flare again. 
 

If I do come out of it in the next couple of months though, the booster shot will just flare it up again. I have to still hope that there is a small period of time where I can breathe properly again between shots. There is always hope.

 

Anyway, one hour at a time does it. I woke up really early this morning with Akathisia, really restless arms and legs, but it subsided within a few hours. 
 

Take care🧡