Carmie: accidently doubling up on Seroquel one day while tapering

[JackieDecides]

1 hour ago, Carmie said:

I’m not getting any waves at the moment, though I’m extremely ill with CFS. I tapered Wednesday night, and it’s Sunday night now. They usually don’t hit until about day five, or a little after. I have many, many more years of tapering to go. I’m grateful that I’m positive by nature, but sometimes everything just gets too much. I’ve been dealing with a lot lately, totally unrelated to withdrawals.

 

I'm so sorry, Carmie, big hugs to you!  🤗  I am so glad you can go and enjoy music in public, good for you. ❤️

[puthappinessfirst]

Dear Carmie,

 

Thank you so much for caring so deeply about all of us. You're such a sweet soul. 

 

Please don't absorb too much energy from the souls who haven't healed yet. Can you meditate and do some energy clearing? Or literally shake your body to help shake out the blocked energy? You're one in a million 💕

[neroli]

Hello Carmie

 

7 hours ago, Carmie said:

it just breaks my heart to see everyone suffering so much.

 

It is awful isn't it?  Even worse that the medical community will not recognise it and so many are left in isolation to deal with terrible symptoms.  Thank goodness for SA and the support.

 

You have a big heart, Carmie, you give many of us the inspiration to cope with the debilitating symptoms - especially as you have CFS on top.

 

7 hours ago, Carmie said:

I’m grateful that I’m positive by nature, but sometimes everything just gets too much

 

Thank you for sharing this.  It's great that you are positive and also good that you can express that at times it gets too much.  I appreciate this.

 

7 hours ago, Carmie said:

The anhedonia has been pretty bad lately though. 

 

I get this as well, I think that's why I said it's so good that you can enjoy music - there are times when there's nothing that gives me pleasure, so here's wishing you a break from the anhedonia desert.

 

Warmest wishes, brave Carmie

 

Neroli 💜

 

 

[powerback]

On 4/21/2019 at 1:11 PM, Carmie said:

I just want to share this with everyone. I’ve been on SA for quite a lot of the day today and it just breaks my heart to see everyone suffering so much. I’m actually feeling really teary right now thinking about all the suffering. Just thinking about how the doctors and pharmaceutical companies can hand out these medications like lollies. Such a corrupt and money making system, and the pain people go through because of it really is mind boggling. That being said, I don’t feel anger towards anyone. I’m not an angry person whatsoever, I just feel sad.😞

 

I’m not getting any waves at the moment, though I’m extremely ill with CFS. I tapered Wednesday night, and it’s Sunday night now. They usually don’t hit until about day five, or a little after. I have many, many more years of tapering to go. I’m grateful that I’m positive by nature, but sometimes everything just gets too much. I’ve been dealing with a lot lately, totally unrelated to withdrawals.

 

I just want everyone to know that my heart goes out to you all, sending you all a million hugs🤗🤗🤗

 

P.s. thanks @neroli for your message. Yes, I’m looking forward to this Wednesday night. I do love music. The anhedonia has been pretty bad lately though. 

Hi carmie have you done any research into empaths ,you need to have a self care system in place for how deeply you feel others pain .

The green mile is a beautiful film .im definitely super senseitive myself during withdrawal.

Of course being an empath is a beautiful gift but not without its draining affects and self care is a must .

Take care .

[Carmie]

Thanks for dropping by @JackieDecides @puthappinessfirst @neroli @powerback

 

I’m doing okay this morning. I am an empath, but I’ve been extra sensitive lately because of things that are happening in my life which are unrelated to withdrawals. It’s been extremely stressful, though I won’t be talking about these things here. I’ve also been really sick with CFS, I could barely move yesterday morning. 

 

I do have a lot of coping strategies, but I haven’t been implementing them regularly enough. I need to start taking better care of myself. It’s time for more self care. I’ve just been overwhelmed with things happening in my life, but I will get my equilibrium back. 

 

This week I’ve started decluttering, that always makes me feel happy. I’m not a clutterer, but every now and again I go through everything and get rid of stuff that seems to accumulate. It feels fabulous. I didn’t have enough storage containers and dividers, so I bought some more this week, and have been organising things better in drawers and cupboards. Everything had its space, but wasn’t seperated from other things, so now everything is easier to find in its own little compartments. I love getting rid of things I don’t use anymore, I can’t see the point of keeping things when you don’t even use them. 

 

Withdrawal wise I’m still doing okay since the last drop on Wednesday night from 7.25mg to 7mg. Today is Tuesday, so it’s day six since the drop. So far, so good. Yay! I did hold about five and half weeks after my drop from 7.50mg to 7.25mg. I went through lots of waves with that drop, the waves were pretty bad for about three weeks, and they started on day 5. A lot of the time I feel the drop around day 5 or so, but my body is still happy with me so far. 

 

After this drop I’m going to do another three 0.25mg drops, and then I’m thinking of microtapering. I may up the water volume. At the moment I’m adding 20ml of water to my 25mg tablet, which makes each ml 1.25mg. To microtaper it will be easier to calculate if each ml is 1mg, so I’ll add an extra 5ml of water, which makes each ml 1mg. A 1:1ratio is easier. 

 

I’ve had bad anhedonia for a while, I couldn’t even laugh watching Johnny English. Rowan Atkinson is so hilarious. I love Mr Bean’s Holiday. I was with friends the other evening and I just felt totally numb.

 

These meds really do change our personality. How wonderful when we all get our brains back, we won’t know ourselves! I did feel joy at the wedding the other weekend, and I feel some joy for the upcoming show I’m going to. The last concert I went to I was fairly numb through most of it, but some joy came peeping through at the last half of the concert, I even got up and danced. I make myself do the things I love, no matter how I’m feeling. I have been to quite a number of concerts in the last couple of years where I wasn’t anhedonic. I thoroughly enjoyed the Keith Urban and Imagine Dragons concerts. 

 

Today I’m going to start journaling again for real. I love journaling, but it fell by the wayside. I journal a little in my every day diary, but it’s not enough. I always feel good when I can journal all my thoughts and feelings. I’m going to start making self care strategies a priority again. Come on Carmie, you can do it!😃

 

I hope you are all coping okay, sending hugs🤗

[intothewoods]

7 hours ago, powerback said:

Hi carmie have you done any research into empaths ,you need to have a self care system in place for how deeply you feel others pain .

The green mile is a beautiful film .im definitely super senseitive myself during withdrawal.

Of course being an empath is a beautiful gift but not without its draining affects and self care is a must .

Take care

 

@powerback, you hit the nail on the head. @Carmie is an empath, like you and me. But she's tough like you. She's very smart and as well, is deeply spiritual. I would be in a ditch (to quote @puthappinessfirst) without Carmie. 

 

I see you just replied, Carmie. Sooooo excited for the Belinda Davids concert. Tomorrow night! Woo-hoo!

 

Hugs from the usual loony suspect,

 

Catherine 😅🤩 🤗

 

[puthappinessfirst]

Another empath checking in here, @intothewoods knows this about me. 

 

Have you folks seen Secret Life of Bees? I always related to the young sister (May, played by Sophie Okonedo) because she could feel and cry for others at the drop of a hat. 

She just FELT things, A LOT. 

[intothewoods]

7 minutes ago, puthappinessfirst said:

Have you folks seen Secret Life of Bees? I always related to the young sister (May, played by Sophie Okonedo) because she could feel and cry for others at the drop of a hat. 

She just FELT things, A LOT. 

 

I've always wanted to watch that movie! Or read the book. So much feeling, @puthappinessfirst but do the characters also analyze and overthink things, well, to pieces? You know how I am about that. It sometimes drives @Carmie crazy (excuse the expression😂).

 

@India is a huge empath. Maybe we should plan an Empath Festival on SA. Would Belinda Davids play for us????? 

[puthappinessfirst]

10 minutes ago, intothewoods said:

I've always wanted to watch that movie! Or read the book. So much feeling, @puthappinessfirst but do the characters also analyze and overthink things, well, to pieces? You know how I am about that. It sometimes drives @Carmie crazy (excuse the expression😂).

 

@India is a huge empath. Maybe we should plan an Empath Festival on SA. Would Belinda Davids play for us????? 

 

Well, this character I am referring to, maybe she does, but they don't show that. 

Although if she's getting so wrapped up in triggering stories and sensations, I would imagine so. 

She usually removes herself from the situation and cries/goes to her safe place to de-stress. 

 

Her story is quite sad towards the end though, so definitely can be triggering. Still, such a beautiful movie. One of my favorites.

 

An empath festival sounds fun, and I imagine we'd all need to rest and replenish our energy stores for a few days after 🤣

[intothewoods]

17 minutes ago, puthappinessfirst said:

Well, this character I am referring to, maybe she does, but they don't show that. 

Although if she's getting so wrapped up in triggering stories and sensations, I would imagine so. 

 

I would imagine so, too, @puthappinessfirst. 

 

Now, a dilemma: do we have sideshows on overthinking and analyzing at the Empath Fest? Or would that be too triggering,  too many CNS sensations? Though if I'm not mistaken, @powerback plays guitar, or at least, he assures me he can smash them up with the best rocker dudes. That would be an exciting musical sensation. Hopefully we haven't lost him at this point, from coming to the festival, I mean.

 

We'll see what @Carmie says. I need to roll this around in my head some more. Think, think, think......

 

[neroli]

Hello Carmie

 

Good to hear that you are feeling ok today - the stresses and waves sound so challenging for you - I am so glad that you haven't been hit with big wobblies from that latest cut.

 

6 hours ago, Carmie said:

I’m going to start making self care strategies a priority again. Come on Carmie, you can do it!😃

 

Yes, it will be good to make self-care a priority again - and if anyone can do it, you can.

 

Sending hugs and good thoughts for a smooth ride on the latest cut.

 

Neroli 💜

[Carmie]

Hi there @intothewoods @puthappinessfirst @neroli

 

I hope you all managed to get through today okay. It’s definitely party time when we are all finally  off these meds, and our brains eventually heal. I think it will be another ten years or so until I’m off my meds, but I’m always excited when I’ve made a drop, no matter how small. 

 

One can never go according to a calendar, we have to go according to how our bodies feel. 

 

Yes, there will definitely be music involved when I’m finally healed. So you play guitar @powerback?  How cool!🎸 I had a guitar when I was a kid, and had lessons, but for some reason they were stopped. Can’t remember why. I always say the only thing I can play is the radio. The thing is I never play the radio, I’m more a CD and Spotify girl. 

 

I’d love this lineup for a celebration festival when we are finally healed.

 

Rob Thomas.

Imagine Dragons. 

Twenty One Pilots. 

Celine Dion. 

Keith Urban. 

Eskimo Joe. 

Josh Groban. 

Michael Buble. 

Pseudo Echo. 

Belinda Carlisle.

Mental As Anything. 

Richard Marx. 

Daryl Braithwaite. 

Tom Chaplin. 

Coldplay.

 

Am am I asking too much? Can we have them all at one event? 🎉🎉🤣🤣 I have seen all these people in concert before, plus others. The only one I haven’t seen is Tom Chaplin. He doesn’t come to Australia.😞 I loved the band Keane, he was the lead singer. They’re not together anymore. Why, oh, why?

 

If possible can someone organise for Simon and Garfunkel to get back together, and Powderfinger. 😜And one more favour, can someone get Chris Norman back as the lead singer of Smokie. Thanks😁

 

Yes, there will be no overanalysing everything to death at an empathy festival Catherine. Overanalysing results in the death of happiness. Some of our overanalysing can bring us to conclusions that aren’t true. Stop it girl!🤣🤣🤣

 

Sending hugs to all. We can win this fight fellow warriors 💚

Edited April 23, 2019 by Carmie
Typo. Brain fog

[intothewoods]

6 hours ago, Carmie said:

Am am I asking too much? Can we have them all at one event? 🎉🎉🤣🤣

 

No, for sure not, @Carmie  I'm sure they'd be delighted to play when they know all you've been through. They'll want to jam with us SA survivor-warriors. 

 

6 hours ago, Carmie said:

Yes, there will be no overanalysing everything to death at an empathy festival Catherine. Overanalysing results in the death of happiness. Some of our overanalysing can bring us to conclusions that aren’t true. Stop it girl!🤣🤣🤣

 

Agreed one thousand percent. Overanalysing is never good, and often fueled by the meds and WDs. We love love and peace. Peace and love. Your Empath Festival will be nothing but food and fun and joyfulness. 🍜🍰🍇😎🤸‍♀️

 

Hope you dance your heart out at Belinda Davids tonight! 💓

[puthappinessfirst]

Can we add John Legend to the lineup too, please?! 😁

[intothewoods]

And R.E.M.? Michael Stipe... that voice.... 

[Carmie]

15 hours ago, puthappinessfirst said:

Can we add John Legend to the lineup too, please?! 😁

 

12 hours ago, intothewoods said:

And R.E.M.? Michael Stipe... that voice.... 

 

Definitely @puthappinessfirst @intothewoods

 

I’ve got so many other artists that I would love at a recovery party too: One Republic, Ben Howard, John Farnham,  Bastille,  Muse (minus the couple of songs that have swearing in them), Pete Murray, Icehouse,  Lee Kernaghan, Lifehouse, Snow Patrol etc etc etc etc etc etc etc.  I think our recovery musical party would go on for a month with all the musicians I like. 

 

I’ve been so anhedonic lately, but I’m actually feeling excited about the show at the Queensland Petforming Arts Centre tonight. Belinda Davids is amazing at singing Whitney Houston songs! I loved her show sooo much last time that I had to see her again. 

 

I’m getting picked up soon. We’re going to a Thai restaurant first. I had red Thai curry for lunch, which I made, so I’m getting a double whammy of Thai food today. Yummy! 

 

Hope you’re both coping as best you can. One day this dreaded withdrawal journey will end. 

 

Sending hugs to you both🤗🤗

[Gridley]

9 minutes ago, Carmie said:

I’m getting picked up soon. We’re going to a Thai restaurant first. I had red Thai curry for lunch, which I made, so I’m getting a double whammy of Thai food today. Yummy! 

 

Have a great time, Carmie! (I'm up late tonight over in the other hemisphere.)

[Songbird]

You're probably at the concert now - I hope you're having a great time.  I had Thai food for dinner tonight too.

 

I could come and sing at the empath festival, and play keyboards.  It would be amazing if we could get Sia to perform too, she's an incredible artist.

[intothewoods]

On 4/23/2019 at 2:38 AM, Carmie said:

So you play guitar @powerback?  How cool!🎸

 

Carmie, @powerback is currently away on tour but I did visit the SA Recording Studio just now and confirm, per him, that he will be attending the concert and playing air guitar. Woo hoo!!!

 

Ok, HOW WAS BELINDA DAVIDS???   And, did you have red or green thai before the concert??? 

 

I hope you're feeling ok today. Just rest, rest and we'll all look forward to the big Recovery Concert one day.  

[intothewoods]

8 hours ago, Songbird said:

I could come and sing at the empath festival, and play keyboards. 

 

@Songbird, I don't know how I missed your post earlier so my apologies and .....this is an AWESOME idea. Your are a songbird! And you play keyboards. 

 

BTW, I visited New Zealand (I'm in Florida) some years ago for two weeks and after France, it's just about my favorite place on the planet. Especially the South Island, with the glaciers and mountains. You live in a beautiful place to have such sad things happening to you. 😥

 

Wishing you a peaceful Thursday, as it will be soon there.....  

[Rosetta]

Hi Carmie.  It looks like you just had your one year anniversary of being a member here!  Wow.  It seems like such a short time ago.  Thanks for all your support. - R

[Carmie]

On 4/24/2019 at 5:10 PM, Gridley said:

 

Have a great time, Carmie! (I'm up late tonight over in the other hemisphere.)

 

On 4/24/2019 at 8:59 PM, Songbird said:

You're probably at the concert now - I hope you're having a great time.  I had Thai food for dinner tonight too.

 

I could come and sing at the empath festival, and play keyboards.  It would be amazing if we could get Sia to perform too, she's an incredible artist.

 

18 hours ago, intothewoods said:

 

Carmie, powerback is currently away on tour but I did visit the SA Recording Studio just now and confirm, per him, that he will be attending the concert and playing air guitar. Woo hoo!!!

 

Ok, HOW WAS BELINDA DAVIDS???   And, did you have red or green thai before the concert??? 

 

I hope you're feeling ok today. Just rest, rest and we'll all look forward to the big Recovery Concert one day.  

 

7 hours ago, Rosetta said:

Hi Carmie.  It looks like you just had your one year anniversary of being a member here!  Wow.  It seems like such a short time ago.  Thanks for all your support. - R

 

Thanks for dropping by everyone, 

 

The concert was great, she’s just amazing! And iiiiiiiiiiiiiiiiiiiiiii will only love youuuuuuuuuu 😁got a standing ovation, as did some of the other songs. I enjoyed the concert, but I was really struggling with anhedonia. I can’t wait for the day when that’s gone, and I can actually enjoy things properly. Anhedonia or not, I still continue to do the things I love. I do get breaks from the anhedonis, but it’s been fairly chronic lately. 

 

Boy, the Thai soup I had for dinner was AMAZING! I really enjoyed that. I’m going back to that restaurant!🍲😋

 

So Gridley, you had a late night on the other side of the hemisphere. Were you reading your novels? I finished two John Grisham novels in the last month or so, I’m now reading a travel book about a father and son who travelled all the way from Melbourne, Australia, to London by car. No planes involved at all. It’s quite interesting, though I’ve had to skip a couple of parts so far, like the cock fighting, and some people eating dogs. Poor doggies!

 

Yes, Songbird, start warming up your voice! How cool you play keyboard too. I can’t sing to save my life, I sound like a dying walrus. That doesn’t stop me though. My poor friends, they love me despite my voice and put up with me.🎤😂Yes, Sia can definitely be included. We’ll have to find a chandelier though.😜

 

Catherine, we’ll have to get Powerback away from touring so he can join in with his air guitar 🎸. I didn’t have curry for dinner as I made myself a red Thai curry for lunch. I had a yummy, yummy, yummy Thai soup with beef and lots of mushrooms. 

 

Rosetta, thank you so very much for your kind words. You are a sweetheart, and I know how much you’re struggling. You were one of the first people to interact with me here on SA. So it’s been a year since I’ve been here, time flies when you’re having fun, and also when you’re not.🥺

Well, I hope that everyone managed to get through the day the best they could, sending hugs to all🤗🤗🤗

[JackieDecides]

13 hours ago, Carmie said:

. I can’t wait for the day when that’s gone, and I can actually enjoy things properly

Good for you for not waiting until that day to do things!

[neroli]

Hello Carmie

 

Good to hear you made it to the concert and enjoyed the Thai soup.

 

Time to get your energy back now and do your self-care (hope the "life issues" resolve so that you can get your self-care back to where it was).

 

hugs to you

 

Neroli 💜

[Carmie]

7 hours ago, JackieDecides said:

Good for you for not waiting until that day to do things!

 

1 hour ago, neroli said:

Hello Carmie

 

Good to hear you made it to the concert and enjoyed the Thai soup.

 

Time to get your energy back now and do your self-care (hope the "life issues" resolve so that you can get your self-care back to where it was).

 

hugs to you

 

Neroli 💜

 

Hi guys, 

 

Thanks for popping around. Today is day nine since my last drop from 7.25mg to 7mg. So far the drop has been going okay, though I had quite a bit of a wave today. It did subside though. With my last drop I got hit with intense waves around day five that pretty much lasted three weeks. It was a nice surprise that the waves didn’t hit in the first week. Let’s see what the rest of the month goes like. I will probably hold for more than four weeks again this time, like I did last time. I held for five and a half weeks. It seemed to pay off so far. 

 

I’m pretty okay withdrawal wise this evening. I’m really sick though with my illness, and haven’t been up to a lot lately. I just went to get some groceries which took a bit of the little bit of strength I have. It was nice getting to the concert Wednesday night, and I hope to catch up with friends this weekend.

 

JackieDecides, I’m all for doing things I love, even if I can’t enjoy them to the full. Anhedonia can certainly take the pleasure out of things, but I think it’s still important to keep doing them anyway. 

 

Neroli, my “life issues” aren’t disappearing. They’re just things I have to cope with, they are outside factors. I have to still get my emotional equilibrium back with the ongoing stress. I’m working on it! 

 

Hope you guys are coping okay 💚

Edited April 26, 2019 by Carmie
Clarification

[SkyBlue]

9 hours ago, Carmie said:

 

I will probably hold for more than four weeks again this time, like I did last time. I held for five and a half weeks. It seemed to pay off so far. 

 

I’m really sick though with my illness, and haven’t been up to a lot lately. I just went to get some groceries which took a bit of the little bit of strength I have. It was nice getting to the concert Wednesday night, and I hope to catch up with friends this weekend.

 

Hello dear Carmie,

 

Glad to hear that the drop seems to be going somewhat okay. You're going about it so sensibly, and are such an inspiration. 

 

Have you heard of "spoon theory?" I've found it useful sometimes in withdrawal w/ my activities so limited much of the time. The idea is that a person has a given (finite!) number of "spoons" at the start the day, and different activities take up different numbers of spoons. For one person, getting groceries would take one spoon. For some of us, it would take 6 and then we need to be sure to adjust our energy and activity accordingly. Of course as we heal, the idea is that we will have more spoons, which will be awesome. In the meantime, I do find that theory helpful.

 

Sending hugs, and hope you enjoy your time w/friends <3.

[Carmie]

3 hours ago, SkyBlue said:

 

Hello dear Carmie,

 

Glad to hear that the drop seems to be going somewhat okay. You're going about it so sensibly, and are such an inspiration. 

 

Have you heard of "spoon theory?" I've found it useful sometimes in withdrawal w/ my activities so limited much of the time. The idea is that a person has a given (finite!) number of "spoons" at the start the day, and different activities take up different numbers of spoons. For one person, getting groceries would take one spoon. For some of us, it would take 6 and then we need to be sure to adjust our energy and activity accordingly. Of course as we heal, the idea is that we will have more spoons, which will be awesome. In the meantime, I do find that theory helpful.

 

Sending hugs, and hope you enjoy your time w/friends <3.

 

Hi Skyblue, 

 

Thanks for popping around to my neck of the woods.🌳🌳🌳 I’m trying to go about tapering as sensibly as possible, I always listen to my body. We are constantly tweaking what we do when it comes to tapering, aren’t we? I’m going to do another three 0.25mg drops after this one, and then I’ll decide whether to mivrotaper.

 

Yes, I have heard of the spoon theory. I do live within my limitations. I spend a lot of time in bed resting. I’m in bed more than anywhere else, but I do my arts and crafts there, read, watch DVDs, listen to music etc. I love my bedroom, I’ve decorated it into a happy place. It’s lovely and cosy. 

 

I say no to a lot of things I’m invited to as I know my limitations. I just said no to the bird park the other week as I’d been to a wedding a few days before, I also said no to another invitation that week.

 

I really, really wanted to go and see the birds, but there’s always another day. I’ve never been there before, and have been wanting to go for a while. I’ve seen photos and the birds are sooo beautiful. They fly on you. One must make sure there’s no dangly jewellery or anything they can fly away with. One of my friends nearly lost his glasses.🤓😁 I’ll be wearing long sleeves too when I go as another friend got bitten on the arm. I can’t wait for the adventure. Two different groups of friends have invited me to go with them next month, so I’m sure I’ll get there. I just live a day at a time, and take each moment as it comes.

 

Today I’m resting, except for a bit of housework, but later on I’m catching up with friends. I hope you’re having a nice day.

 

Thanks for the hugs, sending them right back at you🤗

[Carmie]

Okay, so today is day ten since my last drop, and the waves seem to be hitting this afternoon. I had a wave for a small part of yesterday.  I’m still pretty happy as I had about 8 days without any waves, and then day 9 I had one that only lasted a short while. Now let’s see what the rest of this drop is like. I went through three weeks of waves with the last one, they started around day 5. 

 

I’m happy I’m moving forward though, even though it’s still going to take forever to get off these meds. 

 

When I go through long periods of waves I always know they will eventually end, as they always have. 

 

Okay, my brain has left the building, brain fog is getting severe, hope everyone is coping as best they can. Hang in there fellow warriors 💚

[Carmie]

Hi one and all, 

 

Well it’s nearly 10pm here in Aussie Land. I’m usually off all screens a couple of hours before bed, but it looks like I’ll be going to bed a little later than usual tonight. The majority of the time I stop looking at screens around 8.30pm or so. 

 

I just wanted to say this really is the hardest journey any of us will ever take. Unless one has gone through withdrawals they really don’t have a clue. 

 

It’s tough when you’re going through waves. I’ve been in waves that have gone on for many, many months, like a lot of you. They always eventually subsided though. 

 

I know some of you are going through protracted withdrawals , and my heart really goes out to you. Please know that you will eventually heal, it took Alto around 8 or 9 years, but she did heal. 

 

This last taper hasn’t been too bad so far, though I’ve had some waves the last couple of days. With the last taper I had about 3 weeks of waves. I’m into day ten of the taper from 7.25mg to 7mg. Again, I think the best ever motto someone can have is to Distract! Distract! Distract! We can’t stop the waves, there’s no magical cure. It’s all about trying to get through them as best we can. We shed tears, but then we pick ourselves up again. We can do this! 

 

Hang in there all you brave warriors 💚💚💚

[Songbird]

I'm up late too, and just heading for bed now.  Hope you have a nice sleep!

[Carmie]

2 minutes ago, Songbird said:

I'm up late too, and just heading for bed now.  Hope you have a nice sleep!

 

Thanks Songbird, 

 

I hope you have a good night’s sleep too. I’ll probably go to bed in half an hour or so. I’m going to put on my head phones now and listen to music on YouTube. I looooove music🎼🎼🎼🎼🎼💚

[Rabe]

Hi Carmie...your message was so inspiring!!!  Im grateful this last taper has gone well for you!! Hope it continues!!!💜

[Rabe]

Nice to hear from you. I’m glad you’re getting some afternoons where the anxiety isn’t too bad, and that you’re having a break from it today. We certainly don’t know how we will be from one hour to the next, do we? I’m sorry your panic gets so bad.

 

   3 hours ago,  Rabe said: 

I am not able to tag for some reason...sorry....sometimes wont post.  Have no idea what problem is but wanted you to know I have been trying!!

 

Yes, the software won’t let us tag people at the moment. It’s best just to go to their threads and write on them without tagging. 

 

Wishing you many more days where your anxiety is a little lower, sending hugs🤗

 

Hi Carmie...the afternoons are actually hardest..especially later.  But I will take the moments in the day when the anxiety is lower...no matter how many.  As you know...some days it goes on all day and others not.  

You are right...never know from day to day or from moment to moment in the day.  I find it hard to live that way again....it is hard for those around me which is the hardest part I think as they just cant understand of course.  But can only do best can.

Thank you SO much for your help with the tagging...I wondered what I was doing wrong.  

I hope that your days continue to be some better Carmie.  Take good care! 💜

[neroli]

19 hours ago, Carmie said:

Please know that you will eventually heal, it took Alto around 8 or 9 years, but she did heal. 

 

This last taper hasn’t been too bad so far, though I’ve had some waves the last couple of days. With the last taper I had about 3 weeks of waves. I’m into day ten of the taper from 7.25mg to 7mg. Again, I think the best ever motto someone can have is to Distract! Distract! Distract! We can’t stop the waves, there’s no magical cure. It’s all about trying to get through them as best we can. We shed tears, but then we pick ourselves up again. We can do this! 

 

Hang in there all you brave warriors 💚💚💚

 

 

Thank you Carmie.

 

Your message gives hope.  Now I have to figure out how to live life/accept life as it is for now - and why I'd want to go through this into my seventies!  Am working on that.  Just feels like my life as it was has fallen apart mostly and the last bits of it are getting harder to hang on to (eg. work).  Still, best not project into the future, try to take it a day at a time.  And you are a grand mistress at hanging in there.

 

Respect to you.

 

Neroli 💜

[Carmie]

Hi @Rabe @neroli

 

Thanks for dropping by. I hope you’re both coping okay. I’m not doing too bad withdrawal wise, but I have a lot on my plate at the moment, and not too much brain power because of the CFS cog fog. I’m needing a little break for self care myself. I’m finding reading everyone’s stories on here overwhelming at the moment as I’m so sick myself, and I’m struggling to think. 

 

I’m sorry to hear your afternoons are so hard Rabe, I hope you are able to enjoy the windows you do get. 

Neroli, Yes, I’m all about hanging in there. I guess because I’ve been so ill with CFS for about two and a half decades I’ve got the hanging in there part down pat.😄 

 

Sending hugs🤗

 

P.s. It looks like the tags are working again. 

Edited April 30, 2019 by Carmie
P.s.

[neroli]

Hello Carmie

 

Sorry to hear you are so sick - and it's a good idea to do some self-care.

 

If you take a break from the forum, we will know that you are taking good care of yourself and doing that "hanging in" that you have perfected.  You've certainly had a challenging life, that's for sure.  Such a courageous soul.

 

Take care of you and we'll think of you and send our best thoughts to you.

 

xxxx Neroli 💜