Carmie: accidently doubling up on Seroquel one day while tapering

[hayduke]

15 minutes ago, Carmie said:

I dropped down by another 0.05mg a couple of days ago

 

So good to see you keep chipping away at the bastard.

 

Sorry to hear you are still doing it tough breathing.  I hope you are finding ways to be as comfy as you can until it turns back around for you.  Sounds like you are doing ok in the floods too eh.

 

Cheers

[Carmie]

Okay, I think it’s time to do a gratitude on here again, though I’m not doing good. Struggling to breathe is really taking its toll. All I can say is Ahhhhhhh!!!😭😭
 

Maybe I shouldn’t have gotten the vax that caused this autoimmune flare, it’s been over five months now. I thought I was doing the right thing. If I didn’t have this flare I would definitely get boosters. Life is hard. 
 

I’m finding doing a 0.05mg drop every three weeks too much too. I did the last one after a month. I think it’s going to take me another twenty years to get off these meds😂 It’s not a laughing matter though. Ahhhh!!

 

Been in tears😢 a lot. That’s life!

 

Okay, now for my gratitude list. I’ve got a Zoom meeting with friends soon so I better get on with it😁: 

 

1. Made a massive soup with chicken and vegetables that will last me a while. It’s really yummy. Will freeze some of it ( I won’t be doing emojis in my gratitude list as I don’t have the time. Looove my emojis )

 

2. Have been stuck in bed a lot due to CFS, but managed to go for a walk to a friend’s place yesterday. I stayed outside with my mask on. Was soooo nice to see them.

 

I walked along the bike track to get there, and since the flood all the lights along there have crashed down. I almost collapsed when I got home though, and when I got through the door I had to lie on the floor as I thought I was going to faint. 
 

Still soooo grateful I saw my friends though. It lifted my spirits as I’m not in a good place at the moment.
 

3. It was a beautiful sunny day.

 

4. My sister in law from down south in Victoria rang today. It was lovely to have a chat. 
 

5. Had a chat with my husband a couple of days ago too. He was at Bribie Island with one of his support workers. 
 

I really miss my outings with my husband, but I don’t know when it’s safe to get in a car with people, because if I got Covid I’d probably end up in hospital. Imagine trying to get the hospital to allow you to water titrate your meds. Imagine the medical complications if I’m already struggling to breathe from the vax. If I didn’t survive, who would take care of my husband?

 

My husband and his support workers have had Covid.
 

I have a friend who is a nurse and she reckons you can ask to self medicate with the nurses looking over you in hospital. Who else on here knows about this? 
 

6. A friend sent me a beautiful loose boho dress as  a present. What a heartwarming gift. Yes, I’m a boho beach girl. I hate structured clothes. I’m all for chill. 
 

7. Another friend of mine got me some groceries that I couldn’t get online as they kept selling out. I keep asking her to give me her bank details, but so far no bank details 😂 I think it’s a pressie, love my friends. They mean the world to me. 
 

This particular friend keeps asking me if I need anything. A lot of my friends do that too. I’m so blessed. I really well and truly don’t know what I’ve done to deserve such amazing friends. 
 

I’ve never been good when it comes to accepting help, but I’m slowly learning to accept help from others. 
 

I’m not going to get to number ten in my gratitude list as my Zoom meeting with friends starts soon.

 

Sending much love to everyone🧡

[Carmie]

Finally put my last drop in the drug signature below. I went from 3.90mg to 3.85mg on the 2nd of this month.  It’s such a tiny drop, only 0.05mg. Even doing that drop every three weeks or so seems to be too much now. I had to hold the last drop for a month or so. 
 

I’m meeting a friend in the park around the corner from my place soon🌳🌳🌳🌳 Looking forward to it. 
 

Take care everyone🧡

[hayduke]

On 3/9/2022 at 7:50 PM, Carmie said:

I have a friend who is a nurse and she reckons you can ask to self medicate with the nurses looking over you in hospital. Who else on here knows about this? 

 

I would prepare a letter asserting this, preferably co signed by your G.P. and keep it with your emergency info, and give them a copy on admission.  Maybe have your nurse friend prepared to talk to them if needed.

I hope the hold gives you a bit of a break from wds and you can pick up the taper before long again.  

Sitting in the park sounds good!

[Carmie]

12 hours ago, hayduke said:

 

I would prepare a letter asserting this, preferably co signed by your G.P. and keep it with your emergency info, and give them a copy on admission.  Maybe have your nurse friend prepared to talk to them if needed.

I hope the hold gives you a bit of a break from wds and you can pick up the taper before long again.  

Sitting in the park sounds good!

Hey Hayduke, 

 

Yes, I think I really need to get something organised with my doctor, just in case. 
 

I haven’t actually stopped tapering, I’m just making the holds a little longer. I’ve found this last drop a little easier so far. I’m tapering under 2% and yet it still causes lots of waves, these are mighty powerful drugs. 
 

Anyway, time for a gratitude list: 

 

1. Went to the park🌳🌳around the corner and met a friend there yesterday. It’s so wonderful being outdoors. 
 

It’s always great chatting with friends too🧡

 

2. I bought two new fans finally, something I’ve been procrastinating about forever. I’ve got one fan in the bedroom, and every time I go into the loungeroom I have to drag it there. So it’s back n forth, back and forth⬅️➡️⬅️➡️
 

Okay, the funny thing is that I had them delivered over a week ago and they are still sitting in their boxes📦📦. I’m still dragging the one fan back and forth🤣 The fan I’m using is slowly on its way out. 
 

I always do this procrastination thing when it comes to electrical appliances. They sit there forever until I finally put them together. I wonder if I’ll put them together today? It’s anyone’s guess😁

 

3. I’m grateful for my slow cooker. I’ve been have a yummy chicken and veggie soup the last few days🍗🥦🧄🧅I put tons of cabbage in it. Where are the cabbage emojis??

 

Maybe I’ll make a different soup today. Still deciding. I love soup😍

 

A friend gave me some grass fed mince too, maybe I’ll make something with that? I’ve also got salmon steaks.Decisions! Decisions!

 

4. I got some really great grass fed bone broth, without anything else added. It’s very yummy 😋 and handy. 
 

5. Coconut aminos are fabulous too when you can’t have soy🥥. They’re not actually from the coconut, but from the tree. So good!

 

6. Still watching White Collar, good distraction📺

 

7. Got another fabulous external support worker for my  husband for the Friday👍He gets to go out four days a week now, he gets out more than me as I’m still in isolation due to my lungs. I have walked around my neighbourhood though. 
 

He’s been to different beaches Monday, Tuesday and Thursday this week, and I asked the new support worker to take him to the beach again today. We love the beach 🌊🌊🌊🌊

 

I’m soooo glad he’s able to get out and about. I’m so glad we have the NDIS funding for the support workers. We pay rent and board where he lives, but the support workers and nurses there are funded by the NDIS. 
 

On top of that, the NDIS has given us the finances for external support workers that don’t work where he lives. They take him out and about. I’m very grateful indeed!

 

On the Thursday a support worker where he lives takes him out too, they only have one van 🚐 where he lives so the van has to be available. It’s been available the last month so that’s been good, he’s been able to get out every Thursday as well. 
 

8. Well, it’s 10.30am, I still haven’t been able to get out of bed🛏. I just realised I haven’t taken my morning supplements. One moment………..Okay, done. 
 

I’m grateful for my supplements. I take Serrapeptase and Nattokinese first thing on an empty stomach. They are enzymes that break down scar tissue. I have to take them every day because the inflammation in my lungs causes scar tissue. I take these a few times a day. 
 

They have to be taken on an empty stomach. I’m taking quite a few supplements, some have to be taken on an empty stomach, some with food, so it’s always a juggling act. 🎾🎾🎾
 

NAC also has to be taken on an empty stomach, as well as Lysine. So I take all these at different times, not together. 
 

I don’t eat until noon or afterwards anyway, so that kind of helps with taking supplements in the morning that need an empty stomach. 
 

9. I really want to see an environmental, integrative doctor 🩺soon. I had to cancel the last appointment due to too much of the virus being around, plus they cost an arm and a leg💪🦵😁. The first appointment is about $400 Australian, but Medicare gives you $100 back. 
 

That doesn’t include tests though, they are also hundreds of dollars, and then the supplements. Being sick is an expensive endeavour. 
 

The friend I caught up with yesterday said she’d drive 🚗 me to the doctor, I’m not game getting on public transport anymore🚌🚊, though I love public transport. It’s so handy and I have a bus terminal around the corner from my place. Boy, life has changed. 

10. The phone just rang☎️. It was my husband’s new support worker for today. I’ve only messaged him and he seemed really nice. I just spoke to him and he’s sooooo lovely!! I’m very happy with him! 

 

Okay, I got to number ten, my brain might actually let me finish reading my novel 📚📖today. Should I dare try??😂

 

Have a fab day🧡

[hayduke]

9 hours ago, Carmie said:

I always do this procrastination thing when it comes to electrical appliances. They sit there forever until I finally put them together. I wonder if I’ll put them together today? It’s anyone’s guess😁

 

Had to laugh out loud, can so relate.  "Can't wait for that new thing to get here!"  Then it sits around in the box till I am moved to get it done.  I feel like this has a lot to do with chronic fatigue.

Similar to "I'm gonna play video games tonight woo!" then "I'm too tired"

[Carmie]

On 3/11/2022 at 8:04 PM, hayduke said:

 

Had to laugh out loud, can so relate.  "Can't wait for that new thing to get here!"  Then it sits around in the box till I am moved to get it done.  I feel like this has a lot to do with chronic fatigue.

Similar to "I'm gonna play video games tonight woo!" then "I'm too tired"

Hey there Hayduke, 

 

I think you’re definitely right there. Having CFS certainly make you procrastinate about things as everything is such an effort.
 

I really need to do some washing but haven’t had the strength, will try tomorrow. My washing machine is downstairs and I have to keep going up and down the stairs. I did go for a walk to the local park today🌳🌳 to catch up with a friend though. 
 

My dishes are still sitting next to the sink, I haven’t had the strength to do those either, I’m really faint 24/7 too and it’s hard standing in one spot. Sometimes I’m on top of my housework and other times my body won’t let me get on top of stuff. I’ve had to learn to be okay with that. 
 

Okay, so on Monday I did another 0.05mg drop and I’m now at 3.80mg. 
 

And I think it’s time to do a gratitude list, I haven’t done one in forever:

 

1. As mentioned I caught up with a lovely friend 👩🏻‍🦰 in a beautiful park one block away from me🌳🌳🌳🌳I loooove being outdoors☀️. I’m still self isolating, been doing so since the beginning of December because of my lungs. I haven’t been in a car or anywhere except for neighbourhood walks. 

 

I’ve decided I need to catch up with people in person again, but only outdoors, and I can walk there. We wore masks😷 and social distanced. 
 

Sooooo many of my friends have or have had Covid🦠. Some have had it really bad and some have hardly had any symptoms. My sister got a bit of a throat tickle for a day and that was it. 
 

2. It was soooo lovely chatting to my friend today. Don’t you just love really deep and stimulating conversations, there’s nothing better than being out in nature🌼🌸🌺🌿and having a real interesting talk about all sorts of things. 
 

Give me a really good in-depth conversation any day. 
 

3. Well, I had friends from Melbourne doing a Queensland trip, and they wanted to catch up with me this week. It was sooooo nice seeing them. I caught up in the park around the corner too🌳🌳

 

I’ve been such a hermit🦀, but I need to come out of my shell again. They were only the second lot of friends I’d caught up with in the park. I’m actually an extrovert, but struggling to breathe every day and being so very sick has put me into a shell. I do Zoom with friends all the time though. 
 

So today was the third time I’ve caught up in the park with a friend. I must do more of it. 
 

4. It seems to be a week for presents this week. My friends from Melbourne got me this cute little bag with a picture of a dog and cat on it🐶🐈. It’s really quirky, I love quirky. 
 

They also got me some beeswax wraps🐝🐝. They’re so good, I’ve actually been meaning to get some. They really wrap around bowls and food so well. They last quite a while too, you just wash them in cold water with eco friendly non chemical detergents. I don’t use chemicals anyway. 
 

Got some tea from them as well☕️, it was rooibos tea, which I love and always have at home. It had additives in it though that I can’t have on the autoimmune protocol. It won’t go to waste though, I’ll pass it on to another friend. 
 

5….. still on the subject of gifts, a couple of days ago a friend left some gifts at my front door🎁. It was such a lovely surprise too. There were quite a few things included, so I won’t go into all the details, but it really warmed my heart. One thing I really loved was the journal📚📝, also a picture frame with an encouraging saying. 
 

When someone gives me a gift it really warms my heart❤️, it’s not the actual gifts though, it’s that they went out of their way to think about me and to buy me things that they gave great thought to. It really is so heartwarming.

 

6. I managed to finish my John Grisham novel 📚a while ago, and am now reading a novel about the American Dust Bowl. Such a sad time in history, the poverty was severe.

 

I like books that are fiction, but also have some real life in them. I think that’s why I like John Grisham novels too, because he’s a lawyer and most of his books are based on law. 
 

I can’t read a lot because of my CFS brain fog, but I can read a little here n there. It takes me forever to get through a novel.
 

7. Oh, yes, I did finally assembly my fans and now I don’t have to keep taking the one fan from room to room. Such a small thing can make such a big difference. It’s nice to have a breeze💨💨

 

8. I bought the best thing EVER!!!! It’s so cheap too on eBay. A galaxy projector ✨✨✨✨✨. At night time I’ve now got pretty lights on my ceiling n on my wall. I loooooove it and highly recommend it. It was under $30 Australian.
 

It’s very soothing too, good for all of us here going through withdrawals. You can makes the patterns move and change colour too🧡💙💜

 

It comes with a laser light that put out little dots that look like stars, and then an LED light that makes the waves of different colours. 
 

Highly recommended 😍😍😍😍😍😍😍😍

 

9. Another thing I got that is really comforting as well is a snug pillow, it’s a really long U-shaped pillow that was made originally for pregnant women. It’s so cosy. I take it with me from the bedroom to the loungeroom. Snuggly!
 

Maybe I should just get another one, so like the fan I’ll have two and don’t need to take it back n forth all the time. 
 

10. I received another two novels in the mail📚📚. That should keep me going for a while as I can only read a bit at a time, as mentioned, due to my CFS brain fog. They were recommended to me. 
 

Hope this all makes sense, my brain is always🤪
 

Anyway, that’s about it. I haven’t been up to a ton, too sick. One hour⏰at a time does it. 
 

Sending hugs🤗

[hayduke]

Awesome Carmie that is such a heartfelt gratitude list.

Parks are so underrated.  No wonder old people sit in them all the time.  I could probably write a short book about all the shenanigans I have seen and lived in the park, let alone the peace and quiet 🙂

I got out to a club last night for the first time in a year or two.  It was good, but man I knew when my sensitised nervous system had had enough.  Was glad to be in sympathetic company.

An ex got me one of those galaxy lights ❤️

[Carmie]

On 4/10/2022 at 2:47 PM, hayduke said:

Awesome Carmie that is such a heartfelt gratitude list.

Parks are so underrated.  No wonder old people sit in them all the time.  I could probably write a short book about all the shenanigans I have seen and lived in the park, let alone the peace and quiet 🙂

I got out to a club last night for the first time in a year or two.  It was good, but man I knew when my sensitised nervous system had had enough.  Was glad to be in sympathetic company.

An ex got me one of those galaxy lights ❤️

Thanks for your kind words Hayduke, 

 

Yes, I love parks or being anywhere in nature. Due to not being able to get out n about I just do neighbourhood walks when I have the strength or just go n sit in the park. I love looking at flowers on walks n taking photos of them🌸🌼🌻🌹🌷📸📸

 

That’s cool😎you’ve got a galaxy projector too. A friend of mine got one recently too as I was telling her about it. She loved it so much that’s she’s getting someone else one as well✨⭐️✨⭐️✨⭐️✨⭐️
 

Overstimulation can certainly be a problem in withdrawals, though I’ve never had a problem going to concerts. I don’t go to clubs but I’ve been to millions of concerts🎸🎤🥁🎷🎹💃💃

 

I haven’t been to concerts since Covid though. I’ve still got tickets to Keith Urban 🎟🎟 but I doubt I’ll be going because Covid seems to be here to stay and I can’t risk it due to my lungs. The concert was supposed to be at the end of last year, but got postponed to this year. I’ve seen him before, he’s got amazing guitar🎸playing skills. 
 

Okay, time for a gratitude list: 

 

1. I’m so grateful I got the password sorted for my online banking 🏦 this morning. Had a fun morning, not! I accidentally put in the wrong information, partly due to severe brainfog, but mainly due to the fact my iPad keyboard kept glitching📱. 
 

I tried too many times and was locked out🚫Then when I tried to get back in again, by resetting things I kept making mistakes too. My keyboard kept adding more digits 1️⃣5️⃣6️⃣all the time and my brain was in lala land🤪so I decided not to muck around with that anymore because it would have frozen the cards❄️❄️❄️. 
 

I ended up ringing up the bank and got it sorted☎️. Just now I switched the iPad off n back on again and it’s working a bit better. Anyway, grateful that the banking is all sorted out. 
 

2. I ordered some more chargers for my phone and iPad📱I keep on taking the ones I have from room to room, like I did with the fan. It’s these little things that make life easier. Now I have a few fans, and soon I’ll have a few chargers😁
 

3. Well, I haven’t really been up to anything, I’m just at home. I did read a tiny bit more of my novel yesterday 📚📖. Might read a bit more today. 
 

4. I got most of my washing done yesterday and managed to get up enough strength to do all the dishes that were sitting on the sink. Yay!!🎉🎉🎉🎉 When you’re really sick these are massive achievements 🏆

 

5. Made a yummy berry smoothie yesterday, will do another today🫐🫐🥤

 

6. A friend sent me some beautiful photos of a group of my friends that went to see camels 🐫🐫 and also went to the sunflower fields 🌻🌻🌻🌻. Such beautiful and fun photos. I love seeing photos. She wanted me to join them, but I can’t. 
 

One of my friends got bitten by a camel apparently, naughty camel!

 

7. The friend that sent me the photos📸 is going to take me to an integrative doctor🩺🔬 next month. I haven’t been in a car since the beginning of December, but I really need to see a doctor for my health.

 

I’ll be masking up😷 and social distancing the best I can. Might sit in the back seat of the car with the window down. I’m still worried about it though because if I got a virus I’d probably end up in hospital. I’m still struggling to breathe from the vax and won’t be getting boosters. 
 

8. My husband’s support workers are amazing. He’s severely depressed this morning and they’re going to take him to the beach as being near the ocean cheers him up🌊🌊🌊🌊

 

9. Soda water, I love soda water, it’s yummy with a bit of apple cider vinegar added🥤🥤🥤🍎🍎

 

10. Boy, my brain glitched and now I can’t think of a number 10🤔. I didn’t sleep much last night either, not that that makes a ton of difference when you have CFS. I wake up just as exhausted as when I go to bed. Not sleeping though doesn’t help. It took me until 2am or so to get to sleep.

 

I couldn’t get my mind to quieten down. Had so much on my mind and it was racing at a million miles per hour, plus being on edge due to withdrawals.
 

Okay, it is a beautiful sunny day so I’m grateful for that☀️☀️☀️☀️, though I love rainy days too🌧🌧🌧

 

Bye for now🧡

[Carmie]

Having an awful time, withdrawals are severe, I’m struggling to breathe and I’m barely functional with CFS😢😢😢 I have so many chronic debilitating illnesses now and WDs on top of this is unbearable!😞

 

It feels like I’m never going to go into remission from my autoimmune illness and I’m going to be struggling to breathe day in day out forever. It’s been nearly seven months. I’m sooooo claustrophobic.

 

A friend just rang me n it was nice having a chat, I was in tears.  No one can do anything to help, no matter how much they want to. No one can take away my breathing problems, you can’t get rid of autoimmune illnesses, they are permanent, they can go into remission though.
 

No one can take away the pain of withdrawals.
 

People can get over CFS, but I’ve had it for nearly 30 years. There’s no way of getting over it though if your CNS is on edge and on hyperdrive all the time with withdrawals though. I’ll be tapering for another decade the way I’m going. I can only taper about 5% or less every three or four months. 
 

I have a constant fear of something happening and not being able to get my meds and getting severe Akathisia again. Dread and fear are my constant companion.

 

I have a constant inner restlessness all the time from withdrawals as it is. I’ve definitely got PTSD. A lot of us on here no doubt have from our experiences. 
 

Life is hard! Life is scary!😔

[Longroadhome]

@Carmie

I haven’t the breathing problems but I do fully understand about WD symptoms. 
As you say no one can help and yes it’s very scary to have these strange and many symptoms. 
what I find is when I’ve had a really helpless day where symptoms have become overwhelming, I make myself reflect on recent days when I have been able to cope and even enjoyed a part of the day, maybe only for a very short period, but it keeps me from spiralling, and I continue on. 
Thinking of you and sending you big (((((hugs))))) 

[Rosetta]

Carrie, I’m here.  You sound so scared.  I wish there were something I could do.  The only thing you take is Seroquel, right?  I understand the fear that you will be unable to get your prescription.  You have plenty right now?  Are you allowed to get extra?  I hope so, and I hope you start to feel better soon.  Maybe you should stop tapering for about 6 months or longer?

 

Rosetta

[hayduke]

Sorry to hear you're feeling so bad at the moment Carmie.  It must be really awful finding it hard to breathe.  Do you have an oxygen bottle to breathe from when it flares up?

You're a tough cookie you 🙂  Guess it might be one of those times where you may wish to hold for a bit.

 

@Rosetta's idea is sound, I had my G.P arrange 3 months of prescription at once during the first quarantine.  Started stocking up on it after that, especially when I was getting more than one day's dosage from a single tablet.  You could also arrange that letter for the hospital about your taper with them just for your peace of mind, if you didn't - hopefully you won't be needing it.

 

Massive hugs @Carmie.  I know you will be staying as comfortable as you can make yourself, and I really hope you are feeling better before long.

 

 

[ShiningLight]

Oh dear friend! Hang in there. ❤️ One moment at a time. Don't think about the next decade, that's way too long.

 

The "I'll never's" are depression and withdrawal incarnate (and something else incarnate too!) 😈.

 

Everybody's probably sick of me saying this, but I say it to remind myself too: just as quickly as this garbage came, it can resolve itself. Past performance (7 months of yuck that you've had) is not a guarantee of future performance. Don't try to predict the future. Or if you must, predict positive things happening.

 

I also want to say, thank you so much for your honesty. It made me feel so much less alone tonight. I am so grateful to you for that. I will be be holding you in my heart. You are not alone. I hope that gives you some comfort as it has me tonight.

 

 

[Carmie]

On 4/19/2022 at 4:17 PM, Longroadhome said:

@Carmie

I haven’t the breathing problems but I do fully understand about WD symptoms. 
As you say no one can help and yes it’s very scary to have these strange and many symptoms. 
what I find is when I’ve had a really helpless day where symptoms have become overwhelming, I make myself reflect on recent days when I have been able to cope and even enjoyed a part of the day, maybe only for a very short period, but it keeps me from spiralling, and I continue on. 
Thinking of you and sending you big (((((hugs))))) 

 

On 4/20/2022 at 3:05 AM, Rosetta said:

Carrie, I’m here.  You sound so scared.  I wish there were something I could do.  The only thing you take is Seroquel, right?  I understand the fear that you will be unable to get your prescription.  You have plenty right now?  Are you allowed to get extra?  I hope so, and I hope you start to feel better soon.  Maybe you should stop tapering for about 6 months or longer?

 

Rosetta

 

On 4/20/2022 at 8:42 AM, hayduke said:

Sorry to hear you're feeling so bad at the moment Carmie.  It must be really awful finding it hard to breathe.  Do you have an oxygen bottle to breathe from when it flares up?

You're a tough cookie you 🙂  Guess it might be one of those times where you may wish to hold for a bit.

 

@Rosetta's idea is sound, I had my G.P arrange 3 months of prescription at once during the first quarantine.  Started stocking up on it after that, especially when I was getting more than one day's dosage from a single tablet.  You could also arrange that letter for the hospital about your taper with them just for your peace of mind, if you didn't - hopefully you won't be needing it.

 

Massive hugs @Carmie.  I know you will be staying as comfortable as you can make yourself, and I really hope you are feeling better before long.

 

 

 

On 4/20/2022 at 2:26 PM, ShiningLight said:

Oh dear friend! Hang in there. ❤️ One moment at a time. Don't think about the next decade, that's way too long.

 

The "I'll never's" are depression and withdrawal incarnate (and something else incarnate too!) 😈.

 

Everybody's probably sick of me saying this, but I say it to remind myself too: just as quickly as this garbage came, it can resolve itself. Past performance (7 months of yuck that you've had) is not a guarantee of future performance. Don't try to predict the future. Or if you must, predict positive things happening.

 

I also want to say, thank you so much for your honesty. It made me feel so much less alone tonight. I am so grateful to you for that. I will be be holding you in my heart. You are not alone. I hope that gives you some comfort as it has me tonight.

 

 

Hello all you beautiful people, thank you so much for all your lovely messages, it’s much appreciated.

 

I’m just taking an hour at a time and doing the best the can. I only dropped by about 1.3% or so the last couple of times and held about a month but the holds still aren’t long enough.

 

It’s been six weeks since the last drop of 1.3%. I think I’m going to have to hold for much longer than a month every time. It’s going to take me two decades still to get off these horrid meds the way I’m going. I won’t be dropping for at least another few weeks. 
 

Longroadhome, yes, I’m trying hard to focus on the positive. I’ve started FasterEFT again to try and help with my emotions. I always find it beneficial but I felt so frozen due to struggling to breathe and due to my other debilitating illnesses that I couldn’t get myself motivated. 
 

I’ve got another issue now too, I have a nodule on my thyroid, I’ve got to get an ultrasound and maybe a biopsy. 
 

Anyway, finally I messaged my friend who is a FasterEFT practitioner and I told her how I feel so frozen and stuck. I couldn’t move forward in any way. I had a session with her last week and it kind of helped me release a few emotions and get some momentum again. I did it via Zoom. 
 

She wouldn’t take any money off me, she insisted, and she wants me to have a session with her every week for free. 
 

Anyway, it’s helped me get a little unstuck and now I do it on my own every evening as well. I just set a timer for under ten minutes otherwise I get so overwhelmed that I don’t do anything. Once the timer has gone off I’ve still kept going the last few days. I tend to have perfectionistic tendencies with lots of things and all or nothing thinking.

 

I really like this saying though: 

CONSISTENCY OVER INTENSITY☀️☀️☀️

Rosetta, I’ve got plenty of Seroquel. Actually enough to last me to the end of 2024. I think I’m just really overwhelmed with everything and have been living in constant fear and dread. FasterEFT lately has been helping to release some the emotions.

 

I fear ending up in hospital and not being able to water titrate my meds. My local gp today said that I won’t be able to do that in the hospital. I’m going to get advice from someone else.
 

I need to continue to do FasterEFT daily and get a professional session once a week with my kind friend who isn’t charging me anything. I need to get on top of this dread and fear I have every day. 

 

I’m going to have to have much longer breaks inbetween tapering too, as mentioned above. It’s amazing that the tiny bit I’m tapering by affects me so much. These drugs are awful!

Hayduke, I’ve got meds that will last me a few years. I always worry that they are going to stop making the generic brand I take.

 

Nearly freaked out today when the chemist I go to said they will no longer be getting that brand in. My first thought was they’ve stopped making it. I thought it was exclusive to that chemist chain.

 

Fortunately they haven’t stopped  making it and even though another chemist doesn’t have it in stock, they are kind enough to order it in for me. 
 

I asked my local gp about me being able to water titrate my own meds if I end up in hospital and he said, no I can’t. He wasn’t any help at all. 😏🙁
 

I finally went to see an integrative doctor last week about my health problems in general and she was really nice. She wanted to know absolutely everything about me, unlike the local gp. Next time I see her, in a month, I’ll ask her about the hospital situation.

 

ShiningLight, I’m hanging in there. Just taking an hour at a time. I’ve been distracting myself with all sorts of things. I’ve been playing word games on my iPad quite a bit lately. I love word games. I also like doing crosswords, but I prefer doing them from an actual book. 

 

YouTube videos are a great distraction too. So many interesting things to listen to on pretty much any subject.
 

I’ve also nearly finished a novel. I always takes me a long time to get through a novel due to CFS brain fog, but I love reading novels. 
 

Anyway, thank you everyone again for your lovely messages. I hope I make sense, too braindead to proofread properly 🧡🧡🧡

[Rosetta]

💜

[Longroadhome]

@Carmie

im glad you have found something that helps you, regarding FasterEFT. It’s the first time I’ve heard of it?
Many of us  are very symptomatic tapering off these meds regardless of how slow we go and the holds we make along the way.

 

I hope  your health improves very soon.
 

You have a kind heart.  

[Carmie]

4 hours ago, Rosetta said:

💜

 

3 hours ago, Longroadhome said:

@Carmie

im glad you have found something that helps you, regarding FasterEFT. It’s the first time I’ve heard of it?
Many of us  are very symptomatic tapering off these meds regardless of how slow we go and the holds we make along the way.

 

I hope  your health improves very soon.
 

You have a kind heart.  

Good morning from Australia dear Rosetta and Longroadhome, 

 

I have to tell you something interesting, which was quite a surprise. When I went to see the integrative doctor last week for the first time she asked me a million questions about all of my health problems. Very thorough indeed. 
 

The surprising thing was that when I was telling her about the withdrawals and all the stuff the doctors have put me through she apologised to me in behalf of the doctors. She APOLOGIZED!! WOW!! I started getting teary. 

Longroadhome, there are videos on FasterEFT on YouTube if you wanted to check it out. I’m so grateful to my friend for helping me get some forward momentum again. What a wonderful friend gifting me free FasterEFT sessions with her🎁 I now have the momentum to do it by myself too at home every evening. 
 

There’s also a FasterEFT website. The courses are really expensive, but there’s a short free course that gives you all of the basics you need to know. It’s quite easy to do and very effective. 
 

I’m trying to not be too concerned about the nodule on my thyroid gland for now. Hopefully it’s nothing, the majority of thyroid nodules aren’t cancerous. I’ll get an ultrasound next week and then a biopsy if I need to. 

My integrative doctor also wants me to do a ton of blood tests🌡🌡🌡 I was going to do them this morning but I don’t have the strength as I went for a walk to the doctors yesterday. 
 

Have a lovely day🧡

[Longroadhome]

@Carmie a Dr apologising doesn’t happen very often. 
There’s still no face to face appointments here unless the Dr thinks it’s required, it’s all by phone. Scary because so much can be missed. 
Let us know how your ultrasound goes. As you say most nodules are benign.
 

I’ll check out the videos for FasterEFT. 
 

Take care 

[Cheeky]

Hi @Carmie, 

I’m so sorry to hear that you’d had a tough time with your last drop. I know how awful

it is as everyday can be so daunting. 
I haven’t been in here for a while and haven’t tapered over a year, I’m trying to give myself a break . I’m happy you saw a integrative doctor that can help you and the apology would’ve brought tears to my eyes too . 

 

Your a strong lady and you will overcome every hurdle . 
sending you hugs 

 

Cheeky 🥰

[Rosetta]

Wow.   That’s great that you have a doctor who is trying to help you!

Rosetta

[Carmie]

On 5/17/2022 at 2:42 PM, Longroadhome said:

@Carmie a Dr apologising doesn’t happen very often. 
There’s still no face to face appointments here unless the Dr thinks it’s required, it’s all by phone. Scary because so much can be missed. 
Let us know how your ultrasound goes. As you say most nodules are benign.
 

I’ll check out the videos for FasterEFT. 
 

Take care 

 

On 5/23/2022 at 9:07 PM, Cheeky said:

Hi @Carmie, 

I’m so sorry to hear that you’d had a tough time with your last drop. I know how awful

it is as everyday can be so daunting. 
I haven’t been in here for a while and haven’t tapered over a year, I’m trying to give myself a break . I’m happy you saw a integrative doctor that can help you and the apology would’ve brought tears to my eyes too . 

 

Your a strong lady and you will overcome every hurdle . 
sending you hugs 

 

Cheeky 🥰

 

On 5/23/2022 at 10:34 PM, Rosetta said:

Wow.   That’s great that you have a doctor who is trying to help you!

Rosetta

 

Hi there lovely people, thanks for your messages, much appreciated. Hope you’re all coping as best you can. 
 

Yes, a doctor apologising certainly doesn’t happen very often. 
 

Anyway, I thought it was about time to do another gratitude list, so here goes: 

 

1. I’m in bed today, it’s a chilly day❄️, but I’m very snug with my heater🔥 and sockies on 🧦

 

2. Going to have a FasterEFT session with a friend today, she’s gifting me sessions🎁🎁

 

3. Just had some yummy salmon and salad for lunch🐟🥗

 

4. My landlord fixed my leaking bathroom tap🚰, he had to put a new one in. I’m really happy about that as I can now have some epsom salt baths again🛀. It was so annoying trying to relax in a bathtub with the drip, drip, drip, drip💦💦💦

 

I haven’t had a bath in forever, I always have showers🚿🚿. I need to do more self care. 

 

I made the landlord wear a mask😷. I don’t usually have anyone in my unit because of my respiratory problems, but my smoke alarm wouldn’t stop beeping, it’s old. I was awake since 2am ⏰ in the morning. Anyway, when he came he fixed the tap too, he had to replace it. I’m getting a new smoke alarm next week. I’ll have to tell the electricians to wear masks too😷😷

 

By the way, my landlord gave me a big avocado 🥑 from a tree on one of the properties he owns. He’s a builder🔨🔧🪛🧰 He’s a really nice landlord, his wife not so much😂
 

5. A kind friend drove me 🚗 to get an ultrasound on the nodules on my thyroid gland. I’ve got to get a biopsy soon too. I’m so grateful to my friends, they are always there for me❤️
 

I only get into cars for medical and health appointments. Otherwise, I’m happy to meet my friends in the park around the corner🌳🌳

 

6. I’m grateful I got a whole heap of blood tests 🌡 and other tests out of the way. I still have one test to do, but I send that to a lab in the mail📮

 

My integrative doctor is very thorough, I’ll probably have a million more tests to do. 
 

7. Home delivery is great, I get all my groceries delivered 🥬🥦🥑🍠🫐🍓🥩🧅🐟

 

8. Love my lovely warm and snuggly nightrobe😍

 

9. I’m grateful that I have the ability to read, something that one can take for granted📚📚📚📚My CFS brain fog is bad, but when I’m able to read I’m happy😁

 

10. My puddy tat🐈

 

Well, that’s about it. I’m still feeling pretty low as I’m struggling to breathe every day still. The vaccine caused such a major autoimmune flare and it doesn’t seem to want to end. 
 

FasterEFT is helping me a little bit though, trying hard not to feel hopeless. The deep dark hole isn’t quite as deep when I do it. 
 

Anyway, I hope you’re all having a great day🧡

[Kostas]

Very glad and happy  to read your gratitude list again Carmie!

All the best  and ..keep going. 

[Carmie]

13 hours ago, Kostas said:

Very glad and happy  to read your gratitude list again Carmie!

All the best  and ..keep going. 

Thanks Kostas, 

 

I hope you’re having a happy day. I might do another gratitude list for today, here goes again:

 

1. I spent time on Zoom with friends for about four hours today👩🏻‍🦰🧑‍🦱👩🏻 It was so lovely just chilling and chatting. My friends are the best, I love them to bits❤️
 

2. I actually had a tiny bit of energy and managed to go for a walk, I love taking photos of flowers and nature🌼🌸📸 It’s winter now so there aren’t as many flowers around, but I  always still find the ones that are there. Saw some really pretty light pink roses🌹

 

3. My puddy tat 🐈 is lying in front of the heater 🔥 and cleaning herself. I love the way cats lick their paws and then wipe their face. So cute😺

 

4. The glow of my Himalayan salt lamp is beautiful, I love the warm glow✨✨✨✨✨✨✨✨

 

5. I got two massive pumpkins on sale the other day, yummy!😋 They’ll keep me going for a while. I also really love sweet potato noodles, might make some in a minute. 
 

I have salmon steaks there too🐟, I could make them. I feel so faint though, I can’t stand  at the stove for long.
 

I’ve got some grass fed liver, that’s already cooked. I only eat grass fed meat because conventional meat is high in omega 6 and causes inflammation. I’ve been trying to find grass fed liver for ages as it’s highly nutritious, and the other day a friend of mine found some for me🎉. She hates liver😁

 

6. I haven’t been able to get an appointment yet for my thyroid nodule biopsy but one of my friends is going to take me when I do 🚗. So grateful for kind and caring friends.
 

 I’ve got to ring ☎️ the clinic next week and see if they have the doctors new roster. She said to ring at the end of the week, but I could try earlier. I’m not sure how long it will take to get an appointment.

 

7. Had a nice FasterEFT session with a friend 👩🏻‍🦳 yesterday, I find them so helpful. I always feel a bit better emotionally afterwards. 
 

8. It’s after 6pm here now⏰. I’m wondering if I might be able to finish my novel tonight through my CFS brain fog. There are only a couple of chapters left📚. If I can’t do that I might watch something🎞

 

My nerves are shot from these meds and it’s hard to settle. I’m constantly going from one thing to another. These meds make you feel like you’ve got ADHD. You are always so unsettled.
 

9. I’m having some soda water with apple cider vinegar in it, one of my favourite drinks. It’s fizzy and refreshing 🍏🥤

 

10. I’m lying on my comfy bed. I spend most of my time here, so I guess it’s good that it’s comfy😂

 

Well, I managed to get through another gratitude list. Life is hard but I’m taking it a day at a time, an hour at a time, a minute at a time⏰

 

Sending hugs🤗

Edited June 6, 2022 by Carmie
Typo

[Rosetta]

Hi, Carmie! Thinking of you. -Rosetta

[Carmie]

On 6/7/2022 at 3:22 PM, Rosetta said:

Hi, Carmie! Thinking of you. -Rosetta

Thanks for thinking of me Rosetta, 

 

I don’t seem up to doing a gratitude list today, I’ve been in tears a lot today. Struggling to breathe every day is just unbearable. I don’t think I’m ever going to come out of this autoimmune flare. My lungs are so inflamed, puffers don’t work and I’m at my wits end. 

 

It’s been eight months since the vax caused this flare. I’ve had flares before with other things, but since the vax I’ve had no reprieve at all.

 

I’m struggling with the effects of these awful medications we are all struggling with on here as well. It just tooooooooo much!!!!

 

I’m such a really positive person by nature, but I feel like everything is caving in on me. The only thing that seems to help is FasterEFT but I seem so frozen again, feeling so claustrophobic from struggling to breathe, and haven’t been able to do it for days. 
 

Okay, where are my tissues again. 
 

Take care🧡

[Ariel]

@Carmie

Thank you, Carmie, for your countless kind messages to members here. They are so helpful and supportive to read, even when they are addressed to someone else. I feel your warmth and compassion benefits us all. 

 

5 minutes ago, Carmie said:

I don’t seem up to doing a gratitude list today, I’ve been in tears a lot today.

 

I'm with you on not being able to or wanting to fake gratitude. I only like to do this when it feels authentic, otherwise I can feel like I'm manipulating myself with toxic positivity. It's a fine line sometimes. 

 

I'm sorry you are suffering from the auto-immune flare for so long, as well as the iatrogenic harm from psych medications. I wish I could wipe away your tears or offer you a shoulder to cry on or hold your hand. You are very brave!

 

Feeling gratitude in this moment for your honesty, courage, kindness. Thank you for being you and hangin' in there. 

In solidarity and support,

A.

[Carmie]

12 minutes ago, Ariel said:

@Carmie

Thank you, Carmie, for your countless kind messages to members here. They are so helpful and supportive to read, even when they are addressed to someone else. I feel your warmth and compassion benefits us all. 

 

 

I'm with you on not being able to or wanting to fake gratitude. I only like to do this when it feels authentic, otherwise I can feel like I'm manipulating myself with toxic positivity. It's a fine line sometimes. 

 

I'm sorry you are suffering from the auto-immune flare for so long, as well as the iatrogenic harm from psych medications. I wish I could wipe away your tears or offer you a shoulder to cry on or hold your hand. You are very brave!

 

Feeling gratitude in this moment for your honesty, courage, kindness. Thank you for being you and hangin' in there. 

In solidarity and support,

A.

Awwww Ariel! Aren’t you just a sweetie pie, you have a heart of gold, 

 

Thank you so much for your very kind words, I just feel so very broken at the moment. 

 

When I finished writing on here I was absolutely bawling my eyes out and I decided to ring a friend. Tears were streaming down my face talking to her. I felt a bit better talking to her. 
 

Yes, good ol’ toxic positivity!! I hate it!! I no longer allow people to get away with it: “All will be fine, look on the bright side, cheer up!” Positivity has to be authentic, not make belief. 

 

If I’m around people who do that I steer clear. I’m not one to complain all the time, but I live in a world of reality. Toxic positivity certainly is toxic, no doubt about it, it actually makes one feel worse. Life isn’t black and white. 

 

Why pretend everything is fine when it’s not. It’s good to keep our chin up and look on the bright side, but pretending things are fine when they’re not is ludicrous. I’m with you there Ariel. 
 

Anyway, having said that, it was so nice chatting to my friend just now. I’ve been pretty much in isolation since omicron went crazy last December here in Australia because if I got it I could end up in hospital due to my lungs.
 

The only time I go anywhere is to medical and health appointments. My friends take me. I Zoom with my friends all the time though. 
 

I really need to take care of my mental health, I think I need to get back to the beach. My friend was saying, that while taking precautions, I need to get back to the places that make me happy. I really, really, really need to get back to the beach for my mental health.
 

I’m going to doctors and I’m going to go to my naturopath again, so I need to go to dr beach as well🌊🌊
 

Thanks again Ariel for the lovely message, I’m grateful for your kindness, sending you the biggest hugs🤗🤗

[Carmie]

P.s. @Ariel I’ve always found it hard to ask for help. No one can really help me with what I’m going through, but they can help with practical things. 
 

I’ve always been the one that’s helped others, but when it comes to me needing help that’s a different matter. I find it hard to ask, but I’m getting better at it. 
 

My parents never cared about me, and I’ve had other narcissistic people in my life too. It’s no doubt due to this that I don’t feel worthy of people taking care of me and doing things for me. 
 

I’ve got the most amazing friends now that would do absolutely anything for me and yet I hold back a lot of the time when they want to do things for me. It’s due to attachment trauma from childhood.

 

My friend who gives me FasterEFT treatments for free said that if I don’t allow other people to do things for me I’m being selfish as it give them happiness to give. That really struck a chord with me. Letting others give to us gives them the delight of giving, I know it makes me happy to give to others.

 

Just now when I was chatting to a friend she said she’s more than happy to take me to my naturopath all the way over the other end of town. How sweet is that! I already have a lift with another friend to take me there next week, but now I have another option too for the future. 
 

I used to go to see my naturopath via public transport, buses and trains. I loooove train rides. It’s not safe for me to go on public transport now though.

 

I haven’t seen my naturopath since December due to omicron going crazy, but he helped me get into remission last time with the use of his powerful rife machine, it does biofeedback and I get the right frequencies my body needs. I have a rife machine at home, but it doesn’t have biofeedback and it’s not as powerful.  It took many months for my naturopath to get me into remission as I was only having a few treatments here and there as they’re expensive, but I got there in the end.

 

I was so grateful to be in remission. I put off the vax as long as possible in case of an autoimmune flare, but once I got it I’ve been struggling ever since. I shouldn’t have gotten it but I thought I was doing the right thing. A lot of people with autoimmune problems haven’t had the reaction I’ve had. Boosters are a no go for me. 
 

I hope this all makes sense, I’m trying to write through CFS brain fog🧡

[Carmie]

Okay, I think I’m on a roll today. How are all you beautiful people on here doing?

 

I have sooooo much I want to say but my CFS brain fog keeps interrupting my thought process. 
 

These meds have done so much damage and continue to do so, it’s more than horrendous. It is what it is though, we can’t change it so there’s not much we can do about it except to take a day at a time.
 

It’s going to take me more than a decade just to get off 3.80mg that I’m at at the moment. The way I’m going it might take a couple of decades and then I worry about protracted withdrawal because my brain is so kindled with all of the meds I’ve been put on and off. 
 

 

Even when I’m not tapering my nervous system is in continual flight and flight due to these horrific meds, I feel like I have adhd from these meds, I can’t settler 
 

It feels like forever since my last drop, which was only just over 1% and yet I’m still not able to do another drop.

 

On another note, autoimmune disease is soooooo hard, mine attacks my lungs and I struggle to breathe. I have CFS and now an autoimmune disease due to trauma caused by my parents and others. I’m not into the blame game, but the consistent emotional abuse certainly took its toll. 
 

I need to take responsibility for myself, blaming others doesn’t work. We all let things happen to us before we knew better. 
 

I have never had boundaries in my whole life, I was always there for whoever needed me, even if they were toxic. It’s called codependency. 
 

I found out a few years before my father died that when I was a baby my parents didn’t want to take care of me and they handed me in to one of my grandparents. 
 

Actually, I didn’t even know where my dad was before he died. He just disappeared. He got remarried when my mother died to a lady from the Phillipines around his own age. I thought she was nice but then my dad disappeared off the planet. My dad told me to never tell him I loved him. That broke my heart. 
 

My sister, who has the most kindest heart ever became estranged to my dad. He broke her too, I’m crying writing this. 
 

I visited my dad all the time and he just didn’t care about me. I continued to visit him and stay over when my mum died. I don’t care about money whatsoever, but dad said I was in his will. Just another lie. 
 

My mum was abusive too when I was a kid. I have blocked out a lot of it. She had bipolar and used to hit me all the time. All I remember is locking myself in the toilet and screaming out of the window. 
 

My brother reminded me that we tried to stop her from coming into our bedroom by putting our backs to the door. I’m not close to my brother now, I’m not sure what’s happened to him but I’m a hundred percent positive it’s due to trauma. I wish we were closer but he’s so broken.

 

Okay, crying again. 
 

I will continue this when I’m up to it………I hope what I write makes sense as I’m too braindead to edit. 
 

Sending much love to everyone on here🧡

[Carmie]

…….. Okay, still going. Try and stop me😂
 

I was just trying to organise a Zoom call amongst some of my friends. They’ve all got back to me and all I can say is that I’m sooooooooo grateful for my friends. They are AMAZING!!!!!

 

One of my friends rang me just now, and they listened to me through my tears. They’ve got their own battles to fight, but despite that they never waiver in their love for me. It’s just incredible, I really can’t believe how much my friends care for me. I have soooo many caring friends. 
 

Okay, I really need to believe this, I know that my friends love me, but due to early childhood trauma it’s hard to take in. I really am a work in progress and one of these days I might actually believe all my beautiful friends care about me. 
 

I’ve been listening to YouTube videos of Gabor Mate about childhood trauma and it certainly resonates with me. I’ve got one of his books too. 
 

If only I knew what to do with all the trauma I have dealt with early on, I may not have had CFS for nearly 30 years and now an autoimmune disease that affects my lungs that causes flares all the time and that makes me struggle to breathe.  Eight months now since the vax.
 

I wish we all knew about narcissistic abuse when we were younger and about toxic people so we didn’t end up with all the illnesses we have today. 
 

Okay, that’s it for today. I’m so exhausted with CFS, struggling to breathe and life in general. 
 

On a brighter note, one of my beautiful, beautiful friends is taking me to the integrative doctor tomorrow and maybe a park beforehand. 

 

Sending much love to everyone on here struggling with these meds and everything you’re dealing with🧡

[Longroadhome]

7 hours ago, Carmie said:

Thanks for thinking of me Rosetta, 

 

I don’t seem up to doing a gratitude list today, I’ve been in tears a lot today. Struggling to breathe every day is just unbearable. I don’t think I’m ever going to come out of this autoimmune flare. My lungs are so inflamed, puffers don’t work and I’m at my wits end. 

 

It’s been eight months since the vax caused this flare. I’ve had flares before with other things, but since the vax I’ve had no reprieve at all.

 

I’m struggling with the effects of these awful medications we are all struggling with on here as well. It just tooooooooo much!!!!

 

I’m such a really positive person by nature, but I feel like everything is caving in on me. The only thing that seems to help is FasterEFT but I seem so frozen again, feeling so claustrophobic from struggling to breathe, and haven’t been able to do it for days. 
 

Okay, where are my tissues again. 
 

Take care🧡

Carmie I’m so sorry to hear you are still struggling with your breathing. That and WD must be extremely difficult for you. My be heart goes out to you. 
Im sorry there is nothing I can say or do to make you feel any better. 
Please know you are always in my thoughts and I pray that one day very soon you will turn a corner. 
(((((Big Hugs))))) 

[wantrelief]

@Carmie:  Oh I am so sorry to hear about your breathing problems on top of withdrawal and that you are struggling so much.  

 

8 hours ago, Carmie said:

I don’t seem up to doing a gratitude list today, I’ve been in tears a lot today.

That is okay, Carmie.  It is understandable you've been in tears.....who wouldn't be given everything you are facing. I am glad you are expressing how you are really feeling. You are very very brave to be getting through the days in withdrawal and now these months struggling with your breathing.  

 

I really hope you feel some relief soon.  I am thinking of you, Carmie, and sending you big hugs.  💖

[Carmie]

On 6/13/2022 at 10:40 PM, Longroadhome said:

Carmie I’m so sorry to hear you are still struggling with your breathing. That and WD must be extremely difficult for you. My be heart goes out to you. 
Im sorry there is nothing I can say or do to make you feel any better. 
Please know you are always in my thoughts and I pray that one day very soon you will turn a corner. 
(((((Big Hugs))))) 

 

On 6/14/2022 at 12:30 AM, wantrelief said:

 

@Carmie:  Oh I am so sorry to hear about your breathing problems on top of withdrawal and that you are struggling so much.  

 

That is okay, Carmie.  It is understandable you've been in tears.....who wouldn't be given everything you are facing. I am glad you are expressing how you are really feeling. You are very very brave to be getting through the days in withdrawal and now these months struggling with your breathing.  

 

I really hope you feel some relief soon.  I am thinking of you, Carmie, and sending you big hugs.  💖

Hi Longroadhome and wantrelief, 

 

Hope you’re both coping okay today and thank you so much for your lovely messages.

 

Really struggling to breathe at this moment, but I’m ready to do my next drop tonight. I’m going to go from 3.80mg to 3.75mg. Every teeny tiny drop is progress in the right direction I guess. 

Haven’t been up to much today, I’m mainly in bed but I managed to do my washing finally. Yay!!🎉

 

I’m in the mood for a gratitude list today, so here goes: 

 

1. I got to spend some time with one of my gorgeous friends on Tuesday❤️. She’s such a sweetie pie n half my age. She took me to my integrative doctor and before that we sat in a beautiful park overlooking the river🌳🌳

 

2. My integrative doctor is so caring🩺🌡. I had lots of blood tests done n a urine test to see what nutrients I needed and what I had too much of in my system. I got my results.

 

This was the second time I’ve seen her2️⃣ She’s sooo great when it comes to supplements and dealing with my withdrawals.

 

She wants me just to take really small doses of things and see how I go. One of the things I needed was zinc, but she said even if you can’t take a whole capsule💊 just open it up and take a little. I don’t have a problem with zinc though, I can take a whole capsule. 
 

3. I’m happy that so far I haven’t had too bad a reaction to the liquid magnesium she gave me. Woohoo🎉 In the past magnesium has ramped up my withdrawals. I’ve only taken half a mg twice a day, I’ll see how I go and if I’m still okay I might up a little. 
 

4. I’m not sure if this is a thing to be grateful for, but I’ve got an appointment for a biopsy on my thyroid nodules💉🧫. I don’t know if it’s going to be good or bad news, but I’ll be happy when it’s done. It will be a few weeks until I get it, and then a few more weeks for the results. They rang me yesterday☎️
 

5. I’m grateful that my husband got to go out for lunch 🥘 and to the beach today with his support workers🌊🌊🌊

 

The care place he lives at is great and the external support workers I’ve organised are amazing too. 
 

6. A friend is taking me my natural therapist next week at the other end of the city. I haven’t been able to go due to my lungs  and Covid everywhere since December.   I used to catch the buses and trains there🚍🚍🚂🚂 

 

My friend wants to keep taking me there from now on. I’m very grateful. 
 

7. Had a lovely in-depth conversation with another close  friend yesterday☎️ I keep saying this, but I’m ever so grateful for my friends. 
 

They are always there for me, and I’m slowly learning to accept help, I’ve always had trouble accepting help. 
 

8. Oh, yes, when I go to the natural therapist next week we’ll also be going near the water as it’s not far from the beach 🌊🌊🌊🌊

 

9. It’s such a beautiful day today, glorious outside☀️☀️☀️I didn’t have the strength to walk to the park 🌳🌳and sit outside, but it was lovely to be outdoors when I went downstairs to do the washing.🧺

 

10…… and that’s number ten, I finally had a little strength to do some washing🧺🧺

 

I’m taking an hour at a time, struggling to breathe 24/7 is really taking its toll. Maybe one day I’ll go back into remission.

 

I’m grateful now that I have a lovely and caring integrative doctor and a good natural therapist. They aren’t cheap, but they are well worth going to. 
 

I feel gaslighted but my local gp all the time, but he bulkbills me and I don’t have to pay anything when I see him. He referred me to a clinic that also bulkbilled my thyroid ultrasound and will also bulkbill my biopsy, so I won’t have to pay for that either. 
 

My local GP is a really lovely person though, but I know when I’m being gaslighted. The medical profession has gaslighted me so much that now I barely believe anything they say anymore. I do lots of research. 
 

When I went to see my integrative doctor for the first I told her I don’t trust doctors and she apologised to me on behalf of what doctors have done to me. She also found the nodules in my thyroid. She’s very thorough and I’m so grateful I found her. 
 

Anyway, I’m quite braindead so I’ll say bye for now🧡

 

[hayduke]

Hey there Carmie.  I hope your body can work out how ease its auto immune reaction there.  Sorry to hear you are still in discomfort.

 

Good to hear you are enjoying outdoors and time with your friends...that's the best.

Thanks also for your great examples of gratitude lists...I got in the habit of just doing them aloud at the start of the day a while ago, and I'm sure it helped.

*hugs*

[Carmie]

On 6/17/2022 at 11:17 AM, hayduke said:

Hey there Carmie.  I hope your body can work out how ease its auto immune reaction there.  Sorry to hear you are still in discomfort.

 

Good to hear you are enjoying outdoors and time with your friends...that's the best.

Thanks also for your great examples of gratitude lists...I got in the habit of just doing them aloud at the start of the day a while ago, and I'm sure it helped.

*hugs*

Hey there Hayduke, 

 

I’m just so happy you got off these dreaded meds. You really are an inspiration to all. 
 

Yes, my autoimmune disease that attacks my lungs causes me such distress. I feel like I’ve gone into such a bubble since I’m struggling to breathe every day. 
 

I’d really like to help more people on this site, but I’m barely keeping my head above water.
 

I’ve got lots of really close friends, but some days I struggle to let anyone in due to the bubble around me. Having said that, I just spent a couple of wonderful hours chatting to one of my lovely friends, a kindred spirit, like Anne of Greengables says. 
 

I try and think of the things I’m grateful for here and there, but some days I can barely think to save my life, due to CFS. 
 

It’s after 10.30pm so it’s time for Zzzzzzz soon. 
 

Sending you big hugs 🤗🤗