Carmie: accidently doubling up on Seroquel one day while tapering

[hayduke]

Hey Carmie,

 

Visit to Byron sounds nice.  I used to go up there a fair bit way back when, definitely some magic in the region.

 

Thinking about your autoimmune bother - I've been curious about how these classes of drugs we've been prescribed here can affect it.  When I was taking risperidone 10-15 years ago, I had something quite seriously rheumatic in my feet and ankles.  RA I was told, but other docs were a bit baffled.  And yet lately those symptoms are pretty much gone, and on top of that I was told the other day my ankles are fine (by a rheumatologist!) and I don't have signs of rheumatism in my blood.

 

Bessel van der Kolk in The Body Keeps the Score talks about how resolving trauma through therapy seems to result in healthier immune systems and laments the lack of research into it.

 

Raising these notions as food for thought in case you don't get a really clear diagnosis.

 

Good on you for continuing to taper!  And that diet sounds great, hope you're feeling better soon

[Carmie]

On 6/2/2021 at 12:33 AM, Kostas said:

You are an inspiration dear Carmie!

God bless you...

 

On 6/4/2021 at 8:48 AM, Miracle123 said:

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

God bless u my dear.🤗❤️

 

On 6/4/2021 at 12:46 PM, Rosetta said:

Hi Carmie,

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

 

Rosetta

Hi there Kostas, Miracle and Rosetta, 

 

Thank you so much for your kind words. I hope you’re all coping okay. 
 

Rosetta, my breathing and lung problems are not withdrawal related. I’ve had pneumonia in the past and I also accidently burnt my lungs about ten years ago. These things healed, but it’s now triggered a autoimmune reaction and my immune system is attacking my lungs. All the stress I’ve been under has triggered my immune system into attacking me.
 

I’m trying to do everything I can to get the inflammation down in my system. I’m on the Autoimmune Protocol diet. I’m also on a low arginine/ high lysine diet to try and keep the viral load in my body down. I’ve had a number of viruses in the past, EBV and CMV, the cold sore virus etc. One you have a virus it stays in your body for life, you can never get rid of it. I’m trying to keep them as dormant as possible.

 

I’ve been eating so healthy, but I’ve had to get rid of even healthy stuff that’s allowed on the autoimmune diet. I was having lots of bone broth to try and heal my gut, but I ended up with a cold sore. That’s when I realised that the high arginine content in bone broth caused it, I hadn’t had one in years. It can also flare up the other viruses too I was told, so now it’s a low arginine diet for me. I also take some lysine tablets here and there.
 

I’m constantly tweaking my diet depending on what my body is doing, but I don’t eat anything that’s not allowed on the autoimmune diet. 
 

Anyway, my brain fog is slowly getting worse as I’m writing, so I’ll get down to my gratitude list for today, here goes:

 

1) I got myself another Himalayan salt lamp today. I buy it for the amber glow. I find that really relaxing. I only had one and I kept having to take it from the bedroom to the loungeroom depending on what room I was in. Don’t have to do that anymore. Yay!

 

2) I had a lovely epsom salt bath this morning. I was struggling to relax, but it’s really good to get rid of toxins. Some days I’m more relaxed. I’m having treatment to get rid of different pathogens in my body, as I’m doing everything to try and get the inflammation down in my body. 
 

3) Got groceries. I’m grateful we all have plenty of food in this country. I think I bought about 5kg of sweet potatoes. I’m going to cook them up and freeze them in small containers. I like having food prepared in advance, as I’m really sick with CFS and my lung condition, and some days I’m too sick to cook. Because my diet is strict I have to make sure there’s always plenty of things I can eat in my home and I can grab them easily. I can’t eat take away or go out to a restaurant even if they make something I’m allowed to eat because of cross contamination. I love my diet though, I love healthy food.

 

4) Okay, my brain is dying😁. Come on Carmie, you can think of some more. Oh yes, cranked up the music for about an hour today. Love my music. I’ve got tickets to see Keith Urban in concert in December. There’s always a chance that it will be cancelled due to Covid, but I bought the tickets anyway. I’ve seen him in concert before, he’s very good. 
 

5) Went to Seaworld a few weeks back, and was very happy that the polar bears were actually awake. They are usually sleeping every time I go there. Zzzzzz. Also saw the dolphin show, which I kept missing when I went. 
 

6) My cute cat is cosy in front of the heater. 
 

7) A friend bought me a lovely beach sign, with all beach sayings on it. She knows me well. My place is decorated in a beach style, lots of beach pics everywhere.

 

Eight) I had to write the word eight, because every time I wrote the letter an emoji popped up. Ahhhh! Technology! Anyway, let see: A friend of mine came and stayed overnight a few weeks ago before we went into a four day lockdown. We watched Gilmore Girls. I have watched that show one million, billion trillion times. 
 

9) I’m loving having Apple TV. A while back a friend of mine bought me an Apple TV device and so my smart TV is now turned into an Apple TV. I learnt how to mirror whatever I have on my iPad onto the TV. It’s so cool!!😎

 

10) Rooibus tea. I loooove it! 
 

Well, my brain is struggling to think now. It’s 7.30pm and it’s lights out at 9pm.

 

Take care one and all🧡

 

[Rosetta]

Oh!  It’s Winter for you!  I love the image of your cat in front of the heater.  We are cooking here.  I can’t drink enough water.  The dog keeps looking at me as if to say, “What the

H—?” as he looks for the coolest place.  At the moment that’s in front of the TV, but he’s not allowed in that room unsupervised.  He’s only 8 months old.

 

I hate it that your lungs are having autoimmune problems.  I hope your diet helps.  Do you eat organic grains?  My husband can’t eat any grain that is not organic it seems.  The inflammation is unmistakable.  His ring gets too tight to wear, he feels his sinus passages narrow, and he gets short of breath, his belly distends and gets a bloated feeling.  
 

We have been tracking  this reaction.  The best we can determine is that it is a reaction to glyphosate or something like that.  Organic bread, corn tortillas, and cake have no effect on him.  When we lived in Spain, he had none of these problems.

 

Hang in there!  -Rosetta

 

Rosetta

[JackieDecides]

3 hours ago, Carmie said:

Because my diet is strict I have to make sure there’s always plenty of things I can eat in my home and I can grab them easily.

 

I think healthy food is one of if not the most important things for all of us. planning ahead and prep when you can is very important! I'm glad you have found what works for you! 

[Kostas]

Glad to have your gratitude list again Carmie..

It seems that every time I see it , I feel happier!

Best regards and be well. 

[Cheeky]

Hi to my fellow Aussie survivor.

Im currently withdrawing from Seropuel as well. I was just wanting to ask you, if any parts of your taper was harder then others. I recently dropped from 18.25mg to 15mg and am really struggling.  Also I put my 25mg tablet in a jar of 20ml water and take out 1ml at a time, but after this current drop I will be going much slowly. How do you take yours?, I want to do the famous "Brassmonkey slide", but not sure how I can achieve it. 

I appreciate if you could help 

[Carmie]

Hi everyone, 

 

Thanks for all of you dropping by. I’m sorry I missed your last post Hayduke and didn’t reply. Yes, I definitely think these meds can affect autoimmune diseases because anything that can ramp up our central nervous system can pay havoc on the rest of our body.

 

Also, trauma definitely affects the body as well and can cause these illnesses. I’ve been through a lot of trauma in my life and that’s no doubt why I got CFS 26 years ago. It’s not an autoimmune illness as such, but it’s extremely debilitating. Some days I’m stuck in bed for the days, quite a bit actually. In the last couple of years though my immune system started attacking my lungs, and that’s due to the immense amount of stress I’ve been going through. It’s been stressful dealing with my husband’s health deteriorating and trying to get him into a care home that was nice. 
 

I find one of the best things to deal with trauma is doing FasterEFT. I’ve got a long way to go, but it’s certainly been helpful. Yes, the mind and body are definitely connected. 

Kostas, I’m glad my gratitude lists make you feel happy😁. I don’t always feel all that positive though, but I try and look at things that I still have to be grateful for. I was in tears a few times this week, as I was struggling to breathe. It’s so claustrophobic.

Cheeky, I’m using 25ml of water at the moment with a 25mg tablet. Each mg has five separations so I’ve just been going down one at a time at the moment. Each one is now 0.20mg.
 

I went from 5mg to 4.80mg to 4.60mg to 4.40mg. Because every drop, even this small affects me so much I’ve been holding for 3 months or so every time.

 

I just dropped again recently, but instead of doing the full 0.20 drop and holding for  3 months I’ve split it in two. I dropped by 0.10 and will drop another 0.10 in six weeks, thus all up I’m hoping to drop by 0.20mg in three months, just not all in one go.

 

I can’t taper over 5%, I’ve been doing all my tapering under that and then holding for months each time. I’m awful at math, but after the next drop, when I’m down to 4.20mg I’m going to have to figure out what to do next.

 

If I think doing the 0.20mg is too much for my body, even if I split it into 2x 0.10mg I will have to add more water. My brain fog is so severe from the CFS, it takes me forever to figure out math. I’m not a fan of it. I do like crosswords though, give me letters instead of numbers anytime😁.

 

Before doing the 25ml of water I was doing the 20ml of water too. I just added five more ml. As we go down we just have to keep adding more water. How are you doing now since your last drop?

Jackie, yes, definitely. Food is extremely important no matter what we are going through. I’m still sticking strictly to the autoimmune diet, as well as eating high lysine/ low arginine. I’ll no doubt be finding out more ways to tweak my diet as I go along, but I have to make it extremely anti inflammatory. I don’t eat anything that could cause inflammation, but I haven’t had food sensitivities, histamines etc etc tested as yet. Everything cost a fortune. My diet does consist of organic grass fed meat, occasional chicken and lots of seafood, as well has heaps of veggies, except for nightshades, and a little bit of fruit. 
 

Rosetta, awwww, your dog sounds so cute. I’m a big animal fan. No, I don’t eat any grains at all, as all grains can cause inflammation. With the fruit and veggies, I do buy organic ones for the ones that are sprayed a lot. Things like cauliflower though, I just buy conventionally as they don’t have many pesticides. 
 

Anyway, I’m feeling quite low today, but I’ll attempt a gratitude list anyway. Here goes: 

 

1) Spent all morning until about 1pm with a bunch of friends on Zoom. One of my friends is dying of brain cancer, but I’ve never known anyone as positive and encouraging as him. He was encouraging everyone else. We all have really strong faith in our Creator, and that’s definitely what keeps us going. 
 

2) A friend dropped off some presents for me yesterday, which was very sweet. I love all my friends so much, I have the best support system EVER! We all encourage one another. 
 

3) I haven’t really been out anywhere, as I haven’t been well and we have to wear masks and I struggle to breathe, but I did go to the local shops to get groceries. I have lots of food, including yummy salmon steaks and barramundi. 
 

4) A friend messaged to say she would do my shopping, quite a number of friends have offered, so I always have that option. I am grateful.

 

5) Had some roast pumpkin, salad greens and organic grass fed meat for lunch. Yummy!! I just tried açai berry powder for the first time recently too and put it in a smoothie, it’s tastes more nutty than it does sweet and like a berry. I quite like it. I don’t have a sweet tooth now really as much because of my diet. I found ripe green apples sweet. One of my friends laughed at me when I said that, she loves her sweets😁

 

6) I’m struggling to think of things, as I’m feeling a bit low. I’ll keep trying to get to ten. Oh yes, I’ve been doing crosswords again lately, they are a good distraction when I can somehow think through my brainfog. 
 

7) I’ve gone back to reading a novel that I started a million years ago. I can only read when my brain fog isn’t too bad. It’s about a lady detective called Maisie Dobbs. It’s a whole series, I’ll have to get some more of the books. It was recommended to me by a friend. I’ve half started a John Grisham novel too. I must get around to finishing them both😂

 

8/ I’m lying on my comfy bed, I have my Himalayan salt lamp on and my heater, though I’m getting a bit warm now. I have my fairy lights on too. I’m all for atmosphere. My cat is fast asleep, cute thing she is. 
 

9) Okay, okay, again trying to think of two more things. Hmmm!🤔 Oh, yes, it’s wonderful having phones. We can ring our friends at any time. Zoom is great as well. 
 

10) Last one: Oh, I just realised it’s nearly 5pm. Time for dinner, yummy! So that will be number ten, food, glorious food🎼🎼🎼 I do intermittent fasting most days, so I don’t like to eat late. Occasionally I do. I don’t eat breakfast though, I don’t eat until about noon. I feel worse when I eat breakfast. I need to give my body a bit of a break from trying to digest all the time. 

 

Well, I did it again. Yay!! Time for food now. My brain isn’t functioning well, so I hope everything that I’ve written makes sense.
 

Sending hugs to all🤗🤗🤗

 

On 7/12/2021 at 8:56 PM, Rosetta said:

Oh!  It’s Winter for you!  I love the image of your cat in front of the heater.  We are cooking here.  I can’t drink enough water.  The dog keeps looking at me as if to say, “What the

H—?” as he looks for the coolest place.  At the moment that’s in front of the TV, but he’s not allowed in that room unsupervised.  He’s only 8 months old.

 

I hate it that your lungs are having autoimmune problems.  I hope your diet helps.  Do you eat organic grains?  My husband can’t eat any grain that is not organic it seems.  The inflammation is unmistakable.  His ring gets too tight to wear, he feels his sinus passages narrow, and he gets short of breath, his belly distends and gets a bloated feeling.  
 

We have been tracking  this reaction.  The best we can determine is that it is a reaction to glyphosate or something like that.  Organic bread, corn tortillas, and cake have no effect on him.  When we lived in Spain, he had none of these problems.

 

Hang in there!  -Rosetta

 

Rosetta

On 7/12/2021 at 11:28 PM, JackieDecides said:

 

I think healthy food is one of if not the most important things for all of us. planning ahead and prep when you can is very important! I'm glad you have found what works for you! 

On 7/17/2021 at 7:29 AM, Cheeky said:

Hi to my fellow Aussie survivor.

Im currently withdrawing from Seropuel as well. I was just wanting to ask you, if any parts of your taper was harder then others. I recently dropped from 18.25mg to 15mg and am really struggling.  Also I put my 25mg tablet in a jar of 20ml water and take out 1ml at a time, but after this current drop I will be going much slowly. How do you take yours?, I want to do the famous "Brassmonkey slide", but not sure how I can achieve it. 

I appreciate if you could help 

On 7/12/2021 at 11:33 PM, Kostas said:

Glad to have your gratitude list again Carmie..

It seems that every time I see it , I feel happier!

Best regards and be well. 

On 6/6/2021 at 10:33 PM, hayduke said:

Hey Carmie,

 

Visit to Byron sounds nice.  I used to go up there a fair bit way back when, definitely some magic in the region.

 

Thinking about your autoimmune bother - I've been curious about how these classes of drugs we've been prescribed here can affect it.  When I was taking risperidone 10-15 years ago, I had something quite seriously rheumatic in my feet and ankles.  RA I was told, but other docs were a bit baffled.  And yet lately those symptoms are pretty much gone, and on top of that I was told the other day my ankles are fine (by a rheumatologist!) and I don't have signs of rheumatism in my blood.

 

Bessel van der Kolk in The Body Keeps the Score talks about how resolving trauma through therapy seems to result in healthier immune systems and laments the lack of research into it.

 

Raising these notions as food for thought in case you don't get a really clear diagnosis.

 

Good on you for continuing to taper!  And that diet sounds great, hope you're feeling better soon

 

Edited July 26, 2021 by Carmie
Paragraphs

[Carmie]

Just journaling: Okay, I still haven’t had the strength to get out of bed due to CFS. I want to make today as positive a day as I can though. 
 

The struggle to breathe is really what’s getting me down the most, but I am going to keep on moving forward in trying to get this autoimmune flare to settle. I can’t even remember exactly when it started, it was probably about eight months ago or so. I have days here and there where the breathing is bearable.
 

I have to try and dampen down my nervous system as much as possible to help with this flare. It’s hard to do when going through withdrawals, as these meds have taken control of one’s CNS. 
 

Instead of feeling helpless though, I’m going to try and take action. I’ve started taking quite a number of epsom salt baths, which are relaxing. Sometimes though I can’t settle due to WD. I love water though. When I was on holidays this year the bath tub had spa jets. Now, that would be cool!! I found that really relaxing. I have seen you can buy spa mats that you can put into the bath tub, I’m not sure how well they work though. 
 

 I need to get out in nature more, but I haven’t had the strength to go anywhere lately. Grounding is really good for the nervous system.
 

I need to do work on trauma and emotions, start regular journaling again and FasterEft. Just getting my thoughts down on paper, thoughts that no one else will see, but that help get all that chatter out of my brain are very helpful. The last couple of times I did FasterEFT I was in tears, which is a good thing as it releases emotions. I really need to do it regularly, but for some reason I don’t. I have to work on that. 
 

There is always something one can do. Doing nothing and just feeling helpless is not good for one’s spirits. 
 

Anyway, it’s not good staring at the screen for long periods of time either, I found that’s really bad for my nervous system, so it’s time to get off here. 
 

Hope everyone is doing as best they can🧡

[Cheeky]

Hi Carnie, I admire your strength and your resilience. You are at such a small dose and will be free from these drugs eventually. I will be going like a snail, if it takes me 10 years then so be it, living life is important . Take care of yourself , your doing an amazing job.

[hayduke]

Never done the E.F.T thing but a lot of people talk about it.  Seems there are a lot of effective ways to work through trauma.  I love a good cry too, had a beauty yesterday, for some reason listening to ol' Chrissie Amphlett belting out some 80s Divinyls tunes had me tearing up.

 

I'm really missing my yoga during quarantine but doing better without it than I used to.  Meditation's good, I never feel I do as much as I could, but there are so many good guided ones online for when all I feel up to is curling up with headphones on.

 

Wishing you easy breathing Carmie

[Carmie]

Hi @Cheeky    @hayduke ,

 

Hope you’re both having a good day. I’m really struggling to breathe today so I’m just distracting myself by watching videos and crocheting. I wasn’t able to crochet for many years as I ended up with RSI from doing it non stop to help me cope with withdrawals. I do a little bit now, but have to do wrist exercises all throughout the crocheting, so that it doesn’t flare up too much. 
 

Cheeky, it’s going to still take me many, many years just to get off the 4.30mg. I’m going extremely slow and I won’t be jumping off until I’m way under 0.0something, maybe even 0.00something. My body is so extremely sensitive. 
 

Hayduke, I think we all have a good cry here and there. With FasterEFT you’re actually releasing emotions and then tapping them away. With different experiences the intensity of the emotions related to those experiences tend to disappear with this technique. You still remember things, but the emotions are no longer intense. 
 

Okay, time to do my gratitude list: 

 

1) As mentioned, I’m able to crochet again. Yay! I find it relaxing.

 

2) Good ol’ videos that help when one needs a distraction, I’ve been crocheting while watching these.

 

3) Just had a delicious lunch of salmon, sweet potato and cauliflower. 
 

4) I managed to clean out the hallway cupboard. I’m so glad I had the strength to do this. Decluttering is one of my favourite things to do. I hate having lots of stuff, if I don’t use it or don’t love it out it goes. Bye, bye! Have got two boxes to still go through, but my cupboard looks so tidy. 
 

5) Had a lovely epsom salt bath again yesterday, might have one later on today. I actually read a book in the bathtub, I’ve never done that before. I’ve always taken showers, but since my autoimmune condition I’m taking baths with the salts to remove toxins. Extra bonus is that it’s relaxing too. 
 

6) Got two parcels from a friend yesterday with homemade cards she’s made. They will come in so handy, it’s time to send cards to friends, I have an abundance now.

 

7) Catching up with a group of encouraging friends via Zoom this evening.

 

8/ It’s a beautiful sunny day. I must go to the park one day, I just haven’t been well enough to get there. I want to do daily grounding in the near future. I’m slowly adding new habits to my life. I do one thing at a time and make it a habit, and then add something else. I’m doing well with my sticking to the autoimmune protocol diet now, as well as making it high lysine/ low arginine. I’m also doing well with intermittent fasting again. I don’t eat until noon anyway, so I’ve just added not eating after 5-6pm on the other end. Occasionally I’ll eat something a bit later, but usually I only eat between a 5-6 hour window. So I’m grateful that these dietary things are habits now. I’ve lost quite a bit of weight too, but I don’t want to lose anymore so I’m eating as much as I can during that time period.
 

9) I bought a jug water filter so some of the contaminants in the water are now being filtered out. I’m sure they don’t filter out a lot, but something is better than nothing. One day I’ll get a proper filter. 
 

10) I’m glad there are lots of integrative medicine books out there. Am reading one by Amy Myers on autoimmune disease now. She doesn’t suggest the AIP diet, but has her own protocol as regards diet. I’ll be sticking to the autoimmune protocol though. She has lots of other great suggestions. 

 

I got into AIP by reading Sarah Ballantyne’s books. Once you have an autoimmune disease you can’t get rid of it, but you can make the symptoms more dormant. Don’t know how long it will take for this eight month or so flare up to settle. I guess I’m glad there’s hope. I have a good day here and there where my breathlessness isn’t quite as intense so there’s hope. 
 

I’ve also got dr Terry Wahl’s book on autoimmune disease. She put her multiple sclerosis into remission. 
 

One of these days, if I can afford it I’ll go to an integrative doctor. At the moment I’m seeing a natural therapist, he’s always been so good and accurate with all the diagnoses of the things I’ve had wrong with me. We are now focusing on trying to kill any pathogens in my body and trying to lighten the viral load in my blood by keeping the viruses as dormant as possible. I’ve had so many viruses, and once you’ve had a virus you have it for life, but you can do things to keep them as dormant as possible. 
 

Anyway, let’s see what shall I do now? Maybe some reading? I haven’t been able to read for long periods of time because of severe brain fog from the CFS, but maybe I can manage a little today. 
 

Take care🧡
 

 

[Cheeky]

3 hours ago, Carmie said:

Cheeky, it’s going to still take me many, many years just to get off the 4.30mg. I’m going extremely slow and I won’t be jumping off until I’m way under 0.0something, maybe even 0.00something. My body is so extremely sensitive. 

I will be taking longer , but if I can keep my stability while doing it, that means everything to me, even though I want off so much. 

[Cheeky]

3 hours ago, Carmie said:

Hi @Cheeky    @hayduke ,

 

Hope you’re both having a good day. I’m really struggling to breathe today so I’m just distracting myself by watching videos and crocheting. I wasn’t able to crochet for many years as I ended up with RSI from doing it non stop to help me cope with withdrawals. I do a little bit now, but have to do wrist exercises all throughout the crocheting, so that it doesn’t flare up too much. 
 

Cheeky, it’s going to still take me many, many years just to get off the 4.30mg. I’m going extremely slow and I won’t be jumping off until I’m way under 0.0something, maybe even 0.00something. My body is so extremely sensitive. 
 

Hayduke, I think we all have a good cry here and there. With FasterEFT you’re actually releasing emotions and then tapping them away. With different experiences the intensity of the emotions related to those experiences tend to disappear with this technique. You still remember things, but the emotions are no longer intense. 
 

Okay, time to do my gratitude list: 

 

1) As mentioned, I’m able to crochet again. Yay! I find it relaxing.

 

2) Good ol’ videos that help when one needs a distraction, I’ve been crocheting while watching these.

 

3) Just had a delicious lunch of salmon, sweet potato and cauliflower. 
 

4) I managed to clean out the hallway cupboard. I’m so glad I had the strength to do this. Decluttering is one of my favourite things to do. I hate having lots of stuff, if I don’t use it or don’t love it out it goes. Bye, bye! Have got two boxes to still go through, but my cupboard looks so tidy. 
 

5) Had a lovely epsom salt bath again yesterday, might have one later on today. I actually read a book in the bathtub, I’ve never done that before. I’ve always taken showers, but since my autoimmune condition I’m taking baths with the salts to remove toxins. Extra bonus is that it’s relaxing too. 
 

6) Got two parcels from a friend yesterday with homemade cards she’s made. They will come in so handy, it’s time to send cards to friends, I have an abundance now.

 

7) Catching up with a group of encouraging friends via Zoom this evening.

 

8/ It’s a beautiful sunny day. I must go to the park one day, I just haven’t been well enough to get there. I want to do daily grounding in the near future. I’m slowly adding new habits to my life. I do one thing at a time and make it a habit, and then add something else. I’m doing well with my sticking to the autoimmune protocol diet now, as well as making it high lysine/ low arginine. I’m also doing well with intermittent fasting again. I don’t eat until noon anyway, so I’ve just added not eating after 5-6pm on the other end. Occasionally I’ll eat something a bit later, but usually I only eat between a 5-6 hour window. So I’m grateful that these dietary things are habits now. I’ve lost quite a bit of weight too, but I don’t want to lose anymore so I’m eating as much as I can during that time period.
 

9) I bought a jug water filter so some of the contaminants in the water are now being filtered out. I’m sure they don’t filter out a lot, but something is better than nothing. One day I’ll get a proper filter. 
 

10) I’m glad there are lots of integrative medicine books out there. Am reading one by Amy Myers on autoimmune disease now. She doesn’t suggest the AIP diet, but has her own protocol as regards diet. I’ll be sticking to the autoimmune protocol though. She has lots of other great suggestions. 

 

I got into AIP by reading Sarah Ballantyne’s books. Once you have an autoimmune disease you can’t get rid of it, but you can make the symptoms more dormant. Don’t know how long it will take for this eight month or so flare up to settle. I guess I’m glad there’s hope. I have a good day here and there where my breathlessness isn’t quite as intense so there’s hope. 
 

I’ve also got dr Terry Wahl’s book on autoimmune disease. She put her multiple sclerosis into remission. 
 

One of these days, if I can afford it I’ll go to an integrative doctor. At the moment I’m seeing a natural therapist, he’s always been so good and accurate with all the diagnoses of the things I’ve had wrong with me. We are now focusing on trying to kill any pathogens in my body and trying to lighten the viral load in my blood by keeping the viruses as dormant as possible. I’ve had so many viruses, and once you’ve had a virus you have it for life, but you can do things to keep them as dormant as possible. 
 

Anyway, let’s see what shall I do now? Maybe some reading? I haven’t been able to read for long periods of time because of severe brain fog from the CFS, but maybe I can manage a little today. 
 

Take care🧡
 

 

That would be so difficult for you , your gratitude is amazing and will see you through . When did you realise you had a autoimmune problem, how did you find out? 

[sunnysideup69]

Hi @Carmie, 

Your posts always cheer me up. Thanks for dropping by onto my thread.

I'm also trying to have an eating 'window' but it's 12/12 at the moment.

The body is able to do such a lot of healing when it's not so focussed on digestion, am hoping this will help my CNS.

Am sorry that you're struggling with breathlessness, such a horrible flare up it sounds. And for so long. But it will subside again.

Sending good wishes for easier breathing xxx

[Cheeky]

 

 

[Miracle123]

Hi Carmie,Just drop in. Im feel so sorry to hear u are feeling unwell recently with your lungs inflammation and antoimmune system attack. But your are such a strong and positive person to get through this difficuties which is really not easy. 

At least u know well your body reactions with heathly diet and some useful method to relax and keep attraction. So many gratitude list to keep yourself busy.....keep going my dear. You will reach your goal coming sooner. Im believe👍

Im busy with my job and back to my normal routine life. Im just finish my 2nd dose of coviq jab few day past. So far fine for everything with mirror discomfort. 

Im pray for you to get well,recovery and healing. May god bless you. My warmest hugs.❤❤❤🤗

 

[Carmie]

Hi @sunnysideup69 @Cheeky @Miracle123
 

I hope you’re all having a happy day. 
 

Sunny, yes I agree, eating non stop isn’t good for your health. I love intermittent fasting as it gives my body a rest from digestion, as you said. I don’t really get hungry until noon anyway, and now I stop eating around 5-6pm, though occasionally I might eat something a little later. Thanks for your kind words too, I’m glad my post cheer you up, but I don’t always feel that cheery.😁

 

Cheeky, your post was empty. You may have accidentally pressed it, I hope you’re coping okay. 
 

Miracle, thank you for such lovely words too. Yes, I’m still struggling with my autoimmune attacking my lungs, this flare doesn’t seem to want to end. The way I’m going it will still be there in a year, as it’s over eight months now. It really gets me down, but I just have to focus on a day at a time. I’m glad to hear that you’re back to a normal routine. 
 

Okay, here goes my gratitude list: 

 

1) A friend did my grocery shopping a couple of days ago and now I’ve got lots of yummy food: salmon steak, organic grass fed meet, organic mixed lettuce, cauliflower, sweet potatoes, free range and hormone free chicken, kale, carrots etc etc. 

 

She got me a whole pumpkin, it was massive, I think it’s enough to feed the whole neighbourhood🤣

 

2) Had some nice Zoom meetings with friends this week. That’s always encouraging.

 

3) Got sent a cute little card from a friend yesterday with an octopus that likes to hug. She knows me well, I’m a massive hugger by nature. Off course, I can’t do that now though. Those were the days. We were doing really well here in Queensland, we’ve had heaps of times without many restrictions and no community transmission, but we are in lockdown at the moment. 
 

4) Received some supplements in the mail, I ran out of vitaminD. I’m also taking lysine to try and keep the viral load low in my bloodstream, once you’ve had EBV, CMV, the cold sore virus and any other viruses you have them for the rest of your life. I’m trying to keep them as dormant as possible. I must order some vitamin C and a few other things too. I’m grateful for home delivery. 
 

5) My cat is purring away happily next to me on the bed which makes me smile, though I’m not too happy when she makes me get out of bed at 4am to feed her😹

 

6) Silence. This afternoon I’ve had no noise on of any kind. I don’t do that often enough. I was just thinking what makes my holidays restful when I go away besides the obvious, and I realised that I never watch tv or screens as such when I’m on holiday. I have to spend more time quietly, I think it’s really good for the nervous system. 
 

7) I’ve been doing crosswords this afternoon, I’ve actually started doing them again the last few days. Such fun! I used to do heaps of them. I don’t like the double page crosswords where you have to keep moving your head back and forth so much. I mainly do the arrow word ones, where it’s all on one page.

 

Smaller crosswords, where the clues are next to the grid on the same page are okay too. Occasionally, I don’t mind doing the find a word puzzles, but I love crosswords the best as I’m continually learning new things. 

8/ I watched the sun go down from my balcony. 
 

9) I’ve been doing some crocheting. I’ve got a ton of plain blankets I’ve done in the cupboard, but I still have to darn in loose threads. I’m just doing the same stitch over and over, it’s mainly for relaxation purposes. I don’t need that many blankets, I give them away to friends. It benefits me, and they end up with blankets😁

 

10) Yay for comfy around the house clothes!

 

Well that’s about it for today. My cat jumped a moment ago when my alarm went off. I set my alarm for 6pm and I take my meds straight away, that way I never forget them now. In the past there were a couple of times when I couldn’t remember if I took them or not. I don’t want that happening again. 
 

Take care 🤗

 

[Cheeky]

2 hours ago, Carmie said:

Cheeky, your post was empty. You may have accidentally pressed it, I hope you’re coping okay. 

WD brain 🧠 

I was checking to see how you were doing. I’m happy your doing good. I love your gratitude lists. It’s beautiful to appreciate the wonderful things we have in our life. 

[Carmie]

19 hours ago, Cheeky said:

WD brain 🧠 

I was checking to see how you were doing. I’m happy your doing good. I love your gratitude lists. It’s beautiful to appreciate the wonderful things we have in our life. 

Hey there Cheeky, 

 

Thanks for dropping by. How are you doing today, are you having a nice time away? Yes, I know all about that foggy brain🤪too. Mine is from my illness though, I’ve had CFS for about 26 or so years, everything always seems surreal, it’s like I’m thinking and looking through Vaseline. 
 

I’ve learnt to live with it. I send the funniest text messages to friends, I should proofread before I sms people. I’m always correcting my messages after it’s too late, lots of “ Oops, that wasn’t meant to say that. “ 🤣 Though, autocorrect also has a lot to answer for!!

 

Here comes my gratitude list for today, I’ll have to put my brain cap on. I’ve been home for over a fortnight: 

 

1) I’ve got a comfy bed. 🛏I’ve been on it for most of the day, writing letters and watching videos. I spent a number of hours without any noise at all, I think I’ll do that daily, it’s good for my CNS. 
 

2) Had the strength to do a bit of cooking. Had yummy veggies today, as well as organic grass fed meat and salmon steak. 

 

3) I ordered some more supplements today. I’m always running out of supplements. I really want to stock up on them. Now, to grow a money tree🌳🤣🤣

 

4) It was a beautiful sunny day☀️
 

5) I’m drinking a yummy dandelion and chicory tea☕️
 

6) I’ve got sooo much food in my fridge since a friend went shopping for me this week. I must get around to making some kale chips tomorrow. I made some last week, they are yummy! I just have to remember to not leave them in the oven too long as they can burn quickly. The first batch last week were a touch too brown.🔥

 

7) I’ve been colouring in again the last few days, it’s good when your nervous system is shot. Crocheting also helps me. 
 

8/ I’ve got plenty of Epsom salts. It’s time to have epsom salt baths again. 
 

9) Going to get into comfy nightwear soon. 
 

10) I’m grateful I can read and write📚📚🖊🖊

 

It’s about three weeks since my last drop. I only went down by about 2.3%. Im going to hold that for another three weeks and then I’ll go down another 2.3% and hold another six weeks.

 

Lately I’ve been making drops of over 4% and holding three months, but instead of doing that this time I’ve cut it in half to over 2% and I’m holding each half for six weeks instead. Better for my brain and it’s the same amount.

 

I’m using a 5ml syringe and a 1ml syringe. I’m taking 4.20 mg out of my 5ml syringe and 0.10mg out of the 1ml syringe. I’m liking doing it this way, as I can do smaller amounts without having to add more water for now. 
 

💛💛

 

 

[ShiningLight]

Carmie, you are absolutely the 🏆 with attitude!

 

I like your new tapering plan.

[Carmie]

On 8/9/2021 at 11:34 AM, ShiningLight said:

Carmie, you are absolutely the 🏆 with attitude!

 

I like your new tapering plan.

Hi ShiningLight, 

 

Thanks for your lovely message. Will try and write a little more soon, I’ve been really struggling with my breathing as my immune system keeps attacking my lungs. Brain fog is severe too from the CFS, I struggle to read much at all at the moment. 
 

Just thought I’d document that I dropped by 0.10mg tonight to 4.20mg and I’ll stay on the that dose for about six weeks. I just stayed on 4.30 mg for 6 weeks, that also was a 0.10mg drop. I think I’m going to be 100 years old before I get off these meds😂

 

Take care, hope you’re doing well🧡

[ShiningLight]

Hope you feel better soon Carmie. ❤️ Take good care of you.

[Carmie]

On 8/29/2021 at 2:26 AM, ShiningLight said:

Hope you feel better soon Carmie. ❤️ Take good care of you.

Hi ShiningLight, 

 

Thanks for your message. I’ve just been going through so much stuff, unrelated to withdrawals. One day at a time does it, how are you doing?

 

I’m in a major autoimmune flare and I’m really struggling to breathe, it was triggered by the first jab, getting my second jab in a week. Not looking forward to that. It wouldn’t matter what kind of vax it was, any vax whatsoever, whether for the flu or something else, would trigger a flare as they all produce antibodies. Antibodies not only attack viruses, but they also think my lungs are foreign and so attack them too.

 

 I nearly rang the hospital yesterday as I was feeling like I was going to suffocate. I bought an oximeter instead to check my oxygen levels in my blood, but they were fine. The gas exchange in my lungs are still working okay, but my bronchial tubes are inflamed and thus the claustrophobic struggling to breathe thing is happening. The second jab is going to be even worse I was told by my practitioner. Such fun! Not! I need to get them though, if I got that virus I don’t think I’d stand a chance. 
 

My brain fog from the CFS has been extreme too and it’s been hard to read or write anything. 
 

Well, I’ll probably do another drop in my meds soon, maybe in the next couple of days. 
 

Anyway, despite the above and other things I’m dealing with, I’m still going to do a gratitude list today, so here goes:

 

1) I just had some yummy crunchy plantain chips, they just have plantains n oil in them, nothing else. I’m on an autoimmune diet and I can have them. Yay! They are soooo yummy!!

 

2) My cat is looking so cute curled up on the bed with me at the moment. Awww, the little paws and nose. 
 

3) I guess, I’m grateful for the fact that I have the ability to stick to the autoimmune protocol diet. I actually love the diet, I don’t miss grains, sugar, dairy, nuts, seeds, legumes, nightshades etc. I just read about someone complaining about all the things they couldn’t have and how hard it is to stick to, but I have no problems at all. It might just take them some time. Actually, I might have a yummy salmon steak this evening.

 

3) I can hear kookaburras in the background. I love birds, I used to feed kookaburras and other birds on the balcony all the time. 
 

4) I have a fabulous natural practitioner. I’m so happy with him. He’s always so very helpful, and you can email him inbetween visits if you have any questions.
 

5) Managed to take my husband out to the botanic gardens and the beach with the help of a care worker before he went into lockdown. He’s back out of lockdown now as we don’t have any community transmission at the moment. 
 

6) Have managed to do a bit of decluttering. Decluttering is one of my favourite things, I always feel good afterwards. I hate having lots of stuff. It feels good throwing out stuff and giving it away. 
 

7) My friends have been absolutely amazing! They are always there for me with a listening ear and also practical help. 
 

8) Got around to writing thank you cards to some of my friends during a time when my brain fog was so thick. I’m grateful I could do it as I could barely think. I kept making mistakes in my writing, but then I’d just laugh about them in the cards. I wanted to show my friends how much I appreciate their love and caring towards me. I’ve still got heaps more to do.

 

9) I love drinking water. 
 

10) I’ve been watching Blue Heelers, it’s an Australian police show that was made quite a while ago. I’m into season two, still got lots of seasons after that. 
 

There are always things to be grateful for despite all the pain and suffering we might be going through. I’ve shed many tears, but one can only take a day at a time, or an hour at a time on some days. 
 

Hope you have a good day, and I hope I made sense🌼🌼

 

[Cheeky]

Wow you really are a trooper, you have to deal with such uncomfortable systems that not WD related and your gratitude for so much . You inspire me. I hope the next jab isn’t too much for you but you will get through it like you always do. Sending my Aussie friend ((((huggs))))

[Carmie]

23 hours ago, Cheeky said:

Wow you really are a trooper, you have to deal with such uncomfortable systems that not WD related and your gratitude for so much . You inspire me. I hope the next jab isn’t too much for you but you will get through it like you always do. Sending my Aussie friend ((((huggs))))

Thanks for your kind words Cheeky, 

 

I don’t feel all that inspirational lately as I’m struggling to breathe all the time. Had a flare that lasted nine months and my lungs were slowly starting to settle and then the antibodies caused by the vaccine have ramped it up again. 
 

Anyway, thought I’d write a gratitude list for today:

 

1) The weather was glorious today, nice and sunny but not too hot. Sunny Queensland!

 

2) Had enough strength to walk to the shops, got some salad, fish and a packet of plantain chips which only have plantain and healthy oil in them. I try and buy only one at a time now, they’re just 45grams but if I buy more I’m tempted to eat all of them in one go. I love the crunchiness.
 

I can’t eat chips as potatoes are nightshades. I could make sweet potato chips at home, though haven’t done that so far. I can’t eat out because of cross contamination.

 

3) Oh yeah, bought some smoked salmon. Looooooooove smoked salmon. If I buy a really big pack, I usually finish it all on the same day. So yummy!

 

4) Have just been doing a diamond painting of a cat, it was a present. I haven’t done diamond paintings in ages, though I’ve done so many of them. 
 

5) Managed to do some decluttering and moving things around in the loungeroom over the last week. Don’t really have a ton of stuff to declutter there as I’m always decluttering, but I organised the DVDs and CDs and moved a few bits and pieces around. Just have a few cords in a basket to sort out still.
 

Don’t buy many CDs these days as I use Spotify and watch music videos on YouTube. I still like buying DVDs though. Threw out heaps I don’t watch anymore and also CDs I don’t listen too. I put most of my DVDs in folders and throw away the jackets, though a lot of the series I keep in cases. 
 

Decluttering feels so good, it calms my mind.

 

6) Joined friends on a Zoom meeting this morning. It’s nice to see all the smiling faces.

 

7) I love the breeze of my fan. 
 

8/ Managed to order a bunch of supplements I needed, I’m on quite a few because of my health problems and I’ve been quite fortunate they haven’t ramped up my withdrawals. I’m just going through the normal windows and waves, like everyone else.

 

9) Friends keep checking in on me to see if I need anything. I’m so grateful.

 

10) Got to see my natural therapist last week, he’s really good and he’s always been so accurate with everything. Had a meltdown that day though and started bawling my eyes out as I struggle to breathe day in day out. Oh well, seem to have a lot of meltdowns lately, but I’m still grateful I’ve found people that have been helpful to me. 
 

I also have a really nice GP now, he’s just a basic GP and doesn’t know much beyond what GPs are taught, but he’s always more than willing to refer me to any tests I ask for and he also really listens. I really want to see an integrative doctor as well as him, but they’re really expensive. I will get there one day. I already have one in mind.

 

Well, there you go, I did manage to finish my gratitude list despite all. One day at a time does it.

 

🧡🧡

[Carmie]

Just recording for my records that I might do a small drop tonight, I’m still not one hundred percent sure as I’m going through an autoimmune flare and struggling to breathe. I get the 2nd jab in a week and that will make it even worse. I woke up scared and claustrophobic. My last flare lasted nine months.
 

Whether I do it tonight or some other time it will just be 0.05mg which will take me from 4.20mg to 4.15mg. Usually, I would have dropped by 0.10mg and gone down to 4.10mg and then held for six weeks. If I go down by 0.05mg drops instead to get to 4.10mg I’ll hold each drop for about 3weeks or until my body says it’s okay to drop again. I should still arrive at the same destination at the same time, a drop of 0.10mg in six weeks. 
 

The drops sounds so small, but they still really affect me. My taper rate seems to be under 5% every three months. I can’t go any quicker though as I get severe Akathisia. 
 

Anyway, I’m off to visit my husband at his care home today as he’s out of lockdown. His arm is in a sling at the moment, he fell and dislocated his shoulder, poor thing. 

 

Okay, I think I might do a morning gratitude list today instead of one later in the day as I’ll be busy. Here goes:

 

1) I love my weighted blanket, I wouldn’t be without it. 
 

2) I’m enjoying the breeze of the fan on me at the moment. Still don’t have the strength to get out of bed, but I’ll get there.

 

3) Love the practicality of a shopping trolley that I can wheel up to the shops to get groceries, I can’t afford a car as I’m on a disability pension. I also appreciate when my friends take me up to do shopping, that’s when I buy the heavy stuff like kitty litter. 
 

4) I’m feeling very low this morning, but I appreciate that my brain is letting me write this gratitude list despite the brain fog from CFS. I think gratitude lists are good for us, I have written them in notebooks too.
 

5) I appreciate that I have a roof over my head and I always have plenty of food. 
 

6) I appreciate showers, and as soon as I have the strength I’m going to get up and have one. 
 

7) I love flowers, when I’m out and about my eyes are always drawn to flowers.

 

8/ I love taking photos of flowers and nature in general. 
 

9) I’m grateful that I can actually water titrate my meds so I can taper them slowly. 
 

10) I’m happy I can email my natural therapist with any questions I have. He’s great and clarifies things for me. I do tons of research myself though, and only email him when I can’t figure something out myself. 
 

 

Well, one, two, three, out of bed I go and into the shower. Then I have to do last night’s dishes. I usually do my dishes before bed, but didn’t have the strength last night. It’s such a nice feeling waking up to no dishes in the morning. I’ve got to hop onto two buses to see my husband today, I’ll stay there overnight. Fortunately we don’t have any community transmission at the moment.
 

Hope everyone is doing okay 💛

 

 

[direstraits]

🤗🤗🤗💕💕💕

[Carmie]

4 hours ago, direstraits said:

🤗🤗🤗💕💕💕

Hi direstraits, 

 

So lovely to hear from you, thanks for the hugs and love. How have you been doing? Have you gone to the beach lately?

 

I ended up coming home and I’ve crashed in bed now, my husband has a virus again and they put him into isolation while I was there. He’s had two flus this year already. 
 

I really can’t afford to catch a virus of any kind as I might end up in hospital, I’m really struggling to breathe so badly, I’m trying not to go into panic mode as it’s so suffocating. I really am petrified of the second vaccine as it will produce more antibodies that will continue to produce more of an all out attack on my lungs. Any vaccine for any illness would do the same thing. Not looking forward to continuous booster shots, I’ll never get my autoimmune illness into remission. Don’t know if I’d survive Covid even with the vaccine, if just the vaccine causes this much distress. 
 

I’m taking supplements to try and diminish scarring from all the inflammation.

 

Anyway, to try and think positive I’m going to write down my second gratitude list for the day now that I’m chilling at home again. Here goes:

 

1) Got in contact with a new support worker for my husband today, she sounds really lovely and I was going to meet her tomorrow but it was not to be. Look forward to meeting her when my husband is over his virus. 
 

2) We got back another support worker that has always been really great with my husband. He left the support agency we are with and works for himself now and I’m so happy we got him back.

 

Andrew has been on a couple of beach holidays with us in the past. So now we have him back, and also another wonderful support worker from the agency we were originally with. There are support workers and nurses where he lives, but they don’t take him out, so I organised outside support workers that can take him on nice adventures.

 

3) Andrew is going to organise some deep sea fishing with my husband. I can’t join them as I’d throw up. I’ve been whale watching before, but I was watching more of the toilet than anything! I’m okay on boats as long as they’re moving quickly or are on calm waters, but as soon as I’m out in the open ocean and the boat has stopped, that’s it! Hello toilet! Anyway, when they do go out to sea I’ll be dropped off at the beach, my happy place.

 

4) We might go on a holiday on a houseboat one day. Andrew has organised that before with one of his other clients. It would be on a river. That would be so peaceful. 

5) I managed to get a few goodies that my husband likes to him today, but I couldn’t stay. He looked so sad that I couldn’t stay overnight and take him to the beach tomorrow. He always goes into a major depression when he goes into lockdown and can’t get out or I can’t visit. Now he’s in isolation. It never ends. On the bright side I’ll plan some fun things for him to do once he’s over his virus. If I’m too sick to join him the support workers will still take him to those places. I’m very grateful for such kind and caring support workers. 
 

6) This morning before I left home I got a message from a friend who wanted to catch up. I couldn’t today, but will another time. It always warms my heart when my friends think of me. 
 

7) I’ve picked up heaps of cards to send to my friends, I’m all set to write more cards of appreciation. I’ll start writing more some time this week. A friend of mine sent me a whole bunch of cards too as a present, she made them herself. I’m all equipped for card writing. 
 

8/ I’m glad I have a comfy bed.

 

9) I just realised it’s nearly 4.30pm and I haven’t eaten anything as yet. I’m actually not hungry. I do intermittent fasting quite a bit. I don’t normally eat until midday anyway. I’m glad my sugar levels always seem to be stable, I guess that because I’m on the autoimmune protocol diet and only eat anti inflammatory foods, plus intermittent fasting here and there. I’m grateful that I love the food that I’m allowed to eat. 
 

10) Okay, one more thing. What else am I grateful for?  My brain is switching off. I’m grateful I have this iPad that I can do all sorts of things on. It keeps one connected even when one is extremely sick. 
 

I’ll say bye for now as my brain is leaving the building. 
 

Sending big hugs right back to you🤗🤗

[Carmie]

One last thought for today, a question actually. What happens if one ends up in hospital with something if they are water titrating or otherwise measuring their own medication. 
 

The doctors and nurses aren’t going to allow you to mix your own meds. They aren’t going to allow you to bring something into the hospital in a little bottle that you’ve mixed your medication in. What do you do? 
 

If anyone is reading this, and has had this experience what happened? Thank you🧡

[Hanna72]

Hi @Carmie

1 hour ago, Carmie said:

One last thought for today, a question actually. What happens if one ends up in hospital with something if they are water titrating or otherwise measuring their own medication. 

That’s a great question, that I personally have thought of and am repaired for.

I have stashed extra pills and a syringe in my wallet (purse)  if something happens. Then you are all set in making your own liquid, where ever at any time. 
Another thing you can do is have a family member or a friend,  bring you the pills and syringe, then the only thing missing is water and a cup, we should be able to get that about anywhere.

 

Have a great day 🙏
 

 

 

 

 

 

[Carmie]

17 hours ago, Hanna72 said:

Hi @Carmie

That’s a great question, that I personally have thought of and am repaired for.

I have stashed extra pills and a syringe in my wallet (purse)  if something happens. Then you are all set in making your own liquid, where ever at any time. 
Another thing you can do is have a family member or a friend,  bring you the pills and syringe, then the only thing missing is water and a cup, we should be able to get that about anywhere.

 

Have a great day 🙏
 

 

 

 

 

 

Hi there Hannah, 

 

Thank you for your thoughts, I’d have to add a mini mortar and pestle into the mix too. I hope you’re having a good day. 
 

Okay, so I did end up dropping by 0.05mg yesterday night and I went from 4.20mg to 4.15mg. 
 

I can barely think, but I’ll write down a gratitude list anyway:

1) Finished a diamond painting of a cat today, a present from a friend.

2) I’ve been able to crochet again, I had bad RSI for years. I just have to be careful not to overdo it so my wrist doesn’t flare up again. Crocheting relaxes me. 
3) My husband has a bacterial and not viral infection, so he’s no longer in isolation and can have visitors as he’s not infectious. 
4) Been watching YouTube videos. Good ol’ YouTube. 
5) I have plenty of crossword books when I’m able to do them. Can’t do them today because my brain is really bad, but it’s good they are there for when I’m able to. 
6) I have plenty of pens and textas, I love writing and colouring in. 
7) I’m grateful I have a phone so I can contact people when I’m too sick to go anywhere.

8/ I’m grateful that I have grocery stores within walking distance from where I live.

9) I’m appreciate that if I need help of any kind my friends would be over straight away. I’m grateful when I can help my friends too, it makes me very happy.

10) The weather is really beautiful.

 

Looks like my brain let me write my gratitude list. Yay!

 

Have a happy day☀️☀️☀️

[Carmie]

Okay, nervous system pretty shot today, just distracting myself. Breathing is bad too and I’m not very functional due to CFS. Despite all of this I’m still trying hard to look on the bright side and to see what things I can be grateful for, so here goes:

 

1) I managed to walk up to the shops to get a couple of groceries. I almost collapsed, but was grateful I managed to go up as I got some goodies. I should really ask a friend when I’m this bad, they are always telling me to call them if I need anything. It was nice to be outside for a little while though, and I did get home in the end😁

 

2) Got myself a big packet of smoked salmon and I ate it all in one go. 🍽 Whenever I buy smoked salmon I can’t help myself, I always end up eating the whole packet, no matter how big. Last time I bought a small packet, but I’m so sick at the moment that I decided to have a nice treat.

 

3) Got a packet of my yummy fried plantains in healthy oil and some organic apples and lettuce🍎🥬

 

4) Watched Hamilton, the musical, this morning. It’s really long, it’s over two and a half hours, that kept me distracted for a while. 🎼🎼 I was decorating envelopes at the same time💌 I needed to do something else at the same time because my nervous system isn’t doing too good. 
 

I haven’t been to a concert or the theatre since Covid started. We don’t have any community transmission at the moment, but that can change in the blink of an eye. I have Keith Urban🎸tickets for December, but the concert has been postponed until next year in December. I’ve seen him before, he’s great!! Fabulous guitarist!!

 

5) Cranked up the music for an hour or so this afternoon for distraction. I’ve got a big portable speaker that has flashing lights✨✨✨✨of different colours. They flash in tune with the music.

 

6) Watched one episode of Blue Heelers so far, an old Aussie police show. Will watch some more while crocheting.
 

7) Wanted to write a few letters this morning, but my brain fog was so bad and I kept making a million mistakes, so I gave up. On the bright side, I did decorate the paper as that didn’t take much brain power. 
 

8/ I’ve been crocheting lots of blankets, just the same stitch over and over again. I haven’t sewn in the loose ends as yet, but when I do I’ll take them to the RSPCA, so they can use them for the animals there. It’s a win-win. I get something to help relax me and the doggies 🐶🐶🐶🐶and other animals will have blankets to sleep on. The blankets are about the size of a single bed so they can double them over.

 

9) I’m comfy lying on my couch at the moment. 
 

10) I loooove drinking water, it’s so refreshing. 
 

Well, that’s another gratitude list down. Hope everyone is coping okay🧡

[Carmie]

Well, it’s time to write my gratitude list for the day. I’ve been in bed all day, but I’m in reasonable spirits. Here goes:

 

1:  Just had a yummy crunchy organic apple🍎. Might go on a splurge and have another😄

 

2:  A friend who is camping at the moment rang to have a chat.  She told me that she had a toad in her tent🐸 and it rained on the first day💦💦. She’s having a lovely time though. I loooooove being out in nature. 
 

3:  It rained today, sooo great to get some rain💦💦💦💦💦

 

4:  I managed to write a couple of letters💌💌💌

 

5:  I’ve got all the supplements I need at the moment, except for the tocotrienols, which are still coming in the mail. 📮 With my immune system attacking my lungs I’m taking a bunch of things to try and prevent scar tissue.

 

Serrapeptase and Nattokinese are great too, they are enzymes that break down scar tissue. Tocotrienols are excellent, they are the more potent vitamin E. I’m also taking high doses of vitamin D, along with vitamin K, off course. I should always make sure from now that I have enough back ups before I run out. 
 

6: My cat is on the bed now and purring loudly next to me.😺
 

7:  I’m looking forward to meeting my husband’s new support worker tomorrow. His other support worker visited him today and hopefully was able to take him out🌳🌳🌼🌸 And tomorrow if I have the strength we can go and spend some time out in nature again. Love the outdoors! It might rain again though, so we will see what happens.

 

8:  Support workers are the best! My husband’s support worker is picking me up tomorrow too. I live on the other side of town to my husband and get two buses🚌🚌to visit him. On the days we have the external support workers I can get a lift. Yay!🎉It’s very handy for the times I don’t have the strength to catch public transport.

 

9:  Love the glow of my Himalayan salt lamp.

 

10:  Had a tiny bit of strength to have a shower🚿

 

Hope everyone manages to find something to be grateful for, despite everything we go through each day🧡

[Cheeky]

2 hours ago, Carmie said:

Well, it’s time to write my gratitude list for the day. I’ve been in bed all day, but I’m in reasonable spirits. Here goes:

 

1:  Just had a yummy crunchy organic apple🍎. Might go on a splurge and have another😄

 

2:  A friend who is camping at the moment rang to have a chat.  She told me that she had a toad in her tent🐸 and it rained on the first day💦💦. She’s having a lovely time though. I loooooove being out in nature. 
 

3:  It rained today, sooo great to get some rain💦💦💦💦💦

 

4:  I managed to write a couple of letters💌💌💌

 

5:  I’ve got all the supplements I need at the moment, except for the tocotrienols, which are still coming in the mail. 📮 With my immune system attacking my lungs I’m taking a bunch of things to try and prevent scar tissue.

 

Serrapeptase and Nattokinese are great too, they are enzymes that break down scar tissue. Tocotrienols are excellent, they are the more potent vitamin E. I’m also taking high doses of vitamin D, along with vitamin K, off course. I should always make sure from now that I have enough back ups before I run out. 
 

6: My cat is on the bed now and purring loudly next to me.😺
 

7:  I’m looking forward to meeting my husband’s new support worker tomorrow. His other support worker visited him today and hopefully was able to take him out🌳🌳🌼🌸 And tomorrow if I have the strength we can go and spend some time out in nature again. Love the outdoors! It might rain again though, so we will see what happens.

 

8:  Support workers are the best! My husband’s support worker is picking me up tomorrow too. I live on the other side of town to my husband and get two buses🚌🚌to visit him. On the days we have the external support workers I can get a lift. Yay!🎉It’s very handy for the times I don’t have the strength to catch public transport.

 

9:  Love the glow of my Himalayan salt lamp.

 

10:  Had a tiny bit of strength to have a shower🚿

 

Hope everyone manages to find something to be grateful for, despite everything we go through each day🧡

Carmie I’m grateful for the friendship we have 🥰

[Carmie]

On 10/14/2021 at 8:07 PM, Cheeky said:

Carmie I’m grateful for the friendship we have 🥰

Thanks for dropping around Cheeky and your lovely words, 

 

It’s definitely good to know that others can also understand what we go through. 
 

Time for my gratitude list. I didn’t do one yesterday as I was out all day and I stayed overnight at my husband’s place. I don’t interact on forums or social media when I’m away from home. 
 

Actually, I don’t have any of the social media apps on my phone, only on my iPad and I usually leave that at home. I don’t like being controlled by technology, though there are times when I’ve used technology to try and distract myself from withdrawals or my other health problems. I think it’s a fine balance that most of us are still trying to get right. 
 

Okay, gratitude list, it’s time to make time for you: 

 

1: I got to go the beach 🌊 yesterday, my happy place. Yay!🎉 It actually was warm enough to swim, but I didn’t have my bathers, though I did wade through the water and lie on the sand with my legs in the water. May I add, my milky white legs😁Put on your sunnies😎 
 

2: I love my husband’s new support worker. 
 She’s great! She loves computer games🕹, and my husband finally has someone to play them with. I don’t play them, my brain fog from the CFS is always so bad that I have trouble concentrating on anything like that. I’ve never really gotten into computer games anyway, though as a teenager I used to play space invaders a lot🛸🛸🛸😁

 

Anyway, we went into a games arcade yesterday and the two of them were playing away. It made me smile. He has two PlayStations🕹🕹, but because of his brain problems he has trouble setting the games up. Once the games are set up and he knows what’s he’s doing he’s fine. The support worker will help him with that.

 

I bought him the latest PlayStation when it came out but it’s been sitting in the cupboard along with the games I bought. I think the internet is involved with it too or something. I’m not one hundred percent sure if it needs to be connected to the internet. It was really hard to find that PlayStation at the time because they were rare when the pandemic first started. 

3: Okay, enough about computer games, but I am really excited that he has a fellow gaming buddy to play with now. He likes racing games, tennis, golf etc. Let’s see, what else am I grateful for? Oh yes, it was glorious weather yesterday ☀️☀️The day began with rain💦, which I love, but we wanted to go to the beach and thought we wouldn’t be able to, but the day ended up with perfect weather, not too hot or cold.

 

3: I came home via the buses today, so I went for a little walk around the middle of the city, where I swap buses🚌. I needed a few clothes, just basics, but I’m not a shopper so I always make do until I finally get around to getting the things I need. I got some really comfy casual summer pants and also a few pairs of jeans👖👖. I only had two other pairs that are looking a little worse for wear now. I think I’ll be saying bye bye to them soon.

 

I don’t mind browsing in shops for fifteen minutes or half an hour, but I’ve usually had enough after that. I’d rather be out in nature🌊🌳🌸🌼 

 

4: My brain fog is so bad, I’m really struggling to think, but I’m determined to make it to number 10. The breeze near the water was glorious yesterday. Okay, why aren’t I living near the beach?🌊

 

5. I’m grateful I have lots of interesting books I can read. My brain fog from the CFS gets really bad though and I can’t do much reading at the moment, but they are there for when I’m ready to read them📚📚📖. I much prefer reading a physical book than reading something on my iPad. 
 

6. I’m lying on my bed at the moment and it’s comfy🛏. It looks like I might be in bed for the rest of the day, but I’m grateful I have a bed. 
 

7. When I got home my cat🐈 was all sooky and lay next to me on the bed and wanted to be petted. You deserted me mummy! You didn’t come home last night! She’s not a sit on your lap cat and she absolutely hates being picked up, but she loves cuddles and petting. You should hear the purring. 
 

8: I was so happy to hear that one of my friends finally was able to process a lot of important paper work for her carer’s pension. 📄📄📄📄She lives with her aunt and takes care of her. She was also a carer for her mother who just recently went into a nursing home as she needed really high care. My friend had soooo much paperwork to do just because she was no longer taking care of two people, but one. The red tape everywhere is incredible. I’ve gone through so much red tape too over the last few years with different things.
 

9: Essential oils, that reminds me to go and grab some now.

 

10. The fact I have a brain despite it now fading away…………😂

 

Bye for now🧡

[direstraits]

Hi @Carmie

love reading your gratitude lists,so inspiring.

didn't get to the beach too much this past summer,but one time that we did, we saw dolphins swimming close to shore! 🐬that was cool.

      last month we went to smithville,the place with all the shops i've mentioned before, well we were leaving a shop and I stepped off a small step and must have landed wrong and fell and badly sprained my ankles...i couldn't believe I did that! Anyway I'm doin a lot better now but still have some pain...don't think I'll be going back there anytime soon😀

     otherwise,I'm doing pretty good...still have some symptoms but,mostly physical..my eyes drive me crazy sometimes,off balance,still some burning but better than I was,thank goodness.

       I hope you're doing OK...you have so much to deal with but you've got a great attitude.

wishing you better days ahead.

          Love,ds❤️🤗