Carmie: accidently doubling up on Seroquel one day while tapering

[Sheera]

Carmie—you are just so sweet. Your friends will love receiving those cards and doesn’t it just warm your heart to be able to write them?  I hope you’re feeling a teensy bit better today. 

 

Hugs—Sheera

[Carmie]

On 12/30/2018 at 9:00 AM, neroli said:

Thank you, Carmie.

 

Yes, I agree its not good to focus on our symptoms so much.  I have put more effort into sending cards and getting little gifts for friends this year.  Such a great thing that you are doing for your friends.

 

I'm going to attempt a walk with a friend this afternoon.

 

Thank you for your kind words.

 

Neroli 💜

 

6 hours ago, Sheera said:

Carmie—you are just so sweet. Your friends will love receiving those cards and doesn’t it just warm your heart to be able to write them?  I hope you’re feeling a teensy bit better today. 

 

Hugs—Sheera

 

Hi guys, 

 

Thanks for popping by. I have to say doing nice things for friends benefits me more than it does them. You know, there really is much more happiness in giving then there is in receiving. 

 

Snail mail is such fun! I’ve been watching YouTube videos on how to make your mail fun. I put all sorts of things in the envelopes, tea bags, balloons, bookmarks, stickers etc etc. The list is endless. It’s a great distraction too when in withdrawals to make up nice cards n other things. 

 

I finally got out today. Yay!!!🎉🎉 Only for a couple of hours though. I got on a bus to go to a major shopping centre to run some errands. I’m not much of a shopper, I’d much rather be out in nature, but I needed to do a couple of things. I needed to get my glasses and today was the last day I could use my health insurance. I left it to the last day, talk about procrastination! My other glasses are still fine though so I couldn’t be bothered before.

 

I bought this cool ball that’s quite stress relieving. You know how you get those stress balls that are foamy n you squeeze them, well this one wasn’t like that. It’s like a hairy ball, but not hairy as in fluffy, it’s all made of rubber. Okay, I’m going to have trouble explaining it. It’s like the tentacles or rubber hairs. Does that make sense? It feels so lovely, I don’t want to stop playing with it. 

 

Anyway, I’m back in bed now n will be watching DVDs n YouTube videos soon. I don’t have much brain power today.

 

Sending  lots of hugs🤗🤗🤗

 

 

 

 

[Rabe]

You deserve those hugs right back at you Carmie!!  Please take care!!!💜

[neroli]

1 hour ago, Carmie said:

I finally got out today. Yay!!!🎉🎉 Only for a couple of hours though.

That's great, Carmie.  I know you will appreciate just that little bit of a chance to go out.  And to the shops!  Exceptional.

 

Like the descriptions of the letters and things you are making for your friends - very creative and, as you say, a great distraction.

 

I've had a friend visit and am now watching Steve Coogan interview videos while I colour in my book and do some knitting.

 

Best of wishes

 

Neroli 💜

[neroli]

Happy new year, Carmie.  

 

Thinking of you and hoping 2019 is one of increased well-being for you - and that the cross-over goes well.

 

Lots of best wishes

 

Neroli 💜

[Carmie]

Hi @Rabe @neroli

 

Thanks for popping over to my thread. My brain is really bad again today. I wish I could interact with more people today, but it doesn’t seem possible.

 

I’m in bed at the moment, though I did manage to get up to do some housework this morning. Woohoo! I’ve also almost finished a diamond painting of a beautiful lake scene with a canoe n a cottage. So pretty. I’m going to watch some more of Murdoch Mysteries now. Pretty much frozen to my bed now .

 

@Out2C8383  also suffers from CFS, so she understands what I’m going through too. She’s a journalist, she’s extremely interesting, and is suffering so much too. It’s horrible when doctors put you on meds for CFS, which happened in her case. Meds DO NOT cure CFS! I learnt in the last couple of years that CFS is a CNS illness. The meds only make it harder to recover from this illness. 

 

Well, my brain is in lala land again so I’ll say bye for now. 

 

Much love to you both💚💚

[Carmie]

Found a cool playlist on Spotify. It’s called Totally Stress Free. Some of the songs I have in other playlists. I love it! Bonus, I didn’t have to put the playlist together myself. 

 

Can’t concentrate on watching DVDs at the moment, so it’s music time.🎼🎼🎼💚

[Carmie]

Hi everyone, 

 

I hope that you’re all coping as best you can. This definitely is no walk in the park. I just wanted to share something Rhiannon wrote a while back: 

 

“ I have found that learning to live while being sick means living as normal a life as you can, and gently taking care of your nervous system at the same time. By doing normal things as much as possible without strain on the nerves, we don’t want to push ourselves too much, but we don’t want to sit at home and watch life go by either. 

 

If you’re too ill to do anything, we’ll do nothing, but as soon as you feel capable of doing something gentle and healthy, do it.” 

 

Sound advice I’d say. Even in a wave I still make myself go out n do things. It’s really hard but distracting ourselves really is the best thing. I remember being at the movies watching Rogue One and I felt like I was going to die but I just kept watching the movie. 

 

The only thing that prevents me from going out is my illness, there are times I literally can’t move and am stuck in bed. Even then I find distractions, even if it means watching DVDs all day. I’ve had a pretty bad week this week n have been stuck in bed for most of it, but as soon as I’m able to go out I will, probably tonight. 

 

Hang in there everyone and try and live as “normal” a life as possible.

 

Sending hugs🤗🤗🤗

 

 

[neroli]

44 minutes ago, Carmie said:

“ I have found that learning to live while being sick means living as normal a life as you can, and gently taking care of your nervous system at the same time. By doing normal things as much as possible without strain on the nerves, we don’t want to push ourselves too much, but we don’t want to sit at home and watch life go by either. 

 

If you’re too ill to do anything, we’ll do nothing, but as soon as you feel capable of doing something gentle and healthy, do it.” 

 

Such a good quote, Carmie.  Many of us on this site are probably doing this.  Sometimes it is is hard to know if it's really not possible to do things, or there's a sense of "giving in".  I certainly have moments when I question whether I'm giving in but in general I think I know that I am doing the best I can to keep doing "normal" things.  It's a real struggle to get that across to the psychologist, who manages to touch that nerve of "am I doing enough" with statements like 'I can't understand why a person with so many attributes like you isn't making the most of them'. (perhaps not totally verbatim but definitely the gist).  I've written it before but I just don't know whether "therapy" is good for me!

 

Anyway, I hope you are ok.  You have inspired me, the next colouring pattern I finish, I'm going to paste onto fine card and send to a friend with a pack of crayons as a thank you for all her support.

 

Best of the best

 

Neroli 💜

[Rabe]

1 hour ago, Carmie said:

“ I have found that learning to live while being sick means living as normal a life as you can, and gently taking care of your nervous system at the same time. By doing normal things as much as possible without strain on the nerves, we don’t want to push ourselves too much, but we don’t want to sit at home and watch life go by either. 

 

If you’re too ill to do anything, we’ll do nothing, but as soon as you feel capable of doing something gentle and healthy, do it.” 

I found this to be wonderful as well, Carmie, and thank you so much for sharing!  I so hope you are/were able to get out today or tomorrow. @neroli I find the same challenge....am I giving in or am I taking care of myself?  It is just so hard to know sometimes.  

Blessings and hugs to you both!! 💜

[Sheera]

Thinking about you today Carmie!

 

Sheera

[Carmie]

Hi @Rabe @Sheera @neroli

 

Thanks for thinking of me, it really is much appreciated. I’ll contact you all soon. My brain can’t think whatsoever at the moment (CFS), but I just wanted to say hope you’re all having a happy day, if not happy, I hope you’re at least coping okay. 

 

Sending many hugs🤗🤗🤗🤗

[neroli]

Thank you, Carmie, you take care of yourself.

 

I posted off the finished colouring pattern to my friend today and sent her some crayons and a little note pad as well.  Told her how much her support and friendship is valued by me.

 

Coping reasonably today.  Tried swapping to a vape and have realised that too fast a swap probably caused more CNS wobble.  Re-thinking this one.

 

The heat is getting to me.  I'm going to have to have the fan on at night - sleep disturbed.

 

Hope you feel more brain clarity soon.

 

Neroli 💜

[Rabe]

Just wanted you to know I am always thinking about you Carmie, so so waiting for your post saying you are up and about.  But loving all you posts no matter what.  You are a ray of the warmest sunshine!!  Blessings and hugs Carmie.  You are so so good are self care!!  💜

[RusTW]

Carnie hope your feeling better.

Russ

[Tanha]

On 1/2/2019 at 4:18 AM, Carmie said:

Hi everyone, 

 

I hope that you’re all coping as best you can. This definitely is no walk in the park. I just wanted to share something Rhiannon wrote a while back: 

 

“ I have found that learning to live while being sick means living as normal a life as you can, and gently taking care of your nervous system at the same time. By doing normal things as much as possible without strain on the nerves, we don’t want to push ourselves too much, but we don’t want to sit at home and watch life go by either. 

 

If you’re too ill to do anything, we’ll do nothing, but as soon as you feel capable of doing something gentle and healthy, do it.” 

 

Sound advice I’d say. Even in a wave I still make myself go out n do things. It’s really hard but distracting ourselves really is the best thing. I remember being at the movies watching Rogue One and I felt like I was going to die but I just kept watching the movie. 

 

The only thing that prevents me from going out is my illness, there are times I literally can’t move and am stuck in bed. Even then I find distractions, even if it means watching DVDs all day. I’ve had a pretty bad week this week n have been stuck in bed for most of it, but as soon as I’m able to go out I will, probably tonight. 

 

Hang in there everyone and try and live as “normal” a life as possible.

 

Sending hugs🤗🤗🤗

 

 

Carmie, all the best to you. I feel with you. 

 

Tanha

[Carmie]

Hi @neroli @Rabe @RusTW @Tanha

 

Thanks for all your messages. I hope you’re all doing okay. I’ve got really bad brain fog this morning, 

 hopefully it will lift a bit more later on. Trying to read people’s threads but it’s like thinking through Vaseline. 

 

I’m going to crossover back to my original tablet next week some time maybe and I looked at the math last night.It was hard to focus. I’ll put it in my thread later on today so anyone who would like can double check it. 

 

Have a a good day everyone 💚💚💚

Edited January 28, 2019 by Carmie
Clarification

[Sheera]

Carmie—thinking about you—hope you can get your tablets organized and that your brain fog lifts a bit. You’re a trooper!

 

hugs—Sheera

[neroli]

Hello Carmie

 

Thanks for keeping us up to date with your post - even through the Vaseline.

 

I hope your brain de-fogs soon.  And that you get the meds. sorted, it can be quite a job trying to work out the maths.

 

Hot over here again, had a walk this morning and have been inside with the fan ever since.  Knitting, as usual.

 

Neroli 💜

[Carmie]

Just documenting the calculations for my crossover. Brassmonkey double checked my calculations, and I’m good to go. I’ll probably start next week some time. 

 

25mg tablet in 20mls of water.

Each ml equals 1.25mg.

I’m down to 7.5mg = 6ml.

 

1/4 dose = 1.5ml (1.8mg)

1/2 dose = 3ml (3.7mg)

3/4 dose = 4.5ml (5.6mg) 

 

————————————————————————-

 

Compunded capsule is 7.5mg.

I’m also using 20ml of water with that. 

 

1/4 = 5ml (1.8mg)

1/2 = 10ml (3.7mg)

3/4 = 15ml (5.6mg) 

 

———————————————————————————

 

Old Formula ( the compounded capsule)                                  New formula ( the original tablet )

 

3/4 old (15ml = 5.6mg ).                                                               1/4 new ( 1.5ml = 1.8mg )

 

1/2 old ( 10 ml = 3.7mg )                                                               1/2 new ( 3ml = 3.7mg )

 

1/4 old ( 5ml = 1.8mg )                                                                   3/4 new ( 4.5ml = 5.6mg )

 

—————————————————————————————-

 

Phew!! Finally sorted it out!!🎉🎉🎉🎉🎉

 

 

Thanks @neroli. @Sheera for your lovely messages. Much appreciated. Hope you’re both coping as best you can. Yes, I got the meds sorted. Yay!!! Good old calculator came in handy 🧮😄. 

 

Sending hugs🤗💚

 

 

 

 

 

 

Edited January 28, 2019 by Carmie
Clarification

[neroli]

Good news, Carmie.  Glad you're good to go.  Well done, especially with the brain fog.  So, next week, the adventure carries on with the cross-over - all the best for that.

 

Coping ok here, knitting.  Worried I haven't got enough yarn to do the hat and bootees and the shop will shut at 5pm, so I'll have to knit like mad to see if I need another ball before the end of the day.  Actually, I'm not going to worry about it - it's minor.  Just a bit of skewed humour.

 

Thanks for letting us know.

 

Best wishes and hugs

 

Neroli 💜

[Rabe]

Know that the cross taper will go well for you Carmie...it must feel SO good to have all that set to go!!  Wishing you the best!  Keep us posted! 💜

[intothewoods]

So happy you have your figures set and that Brassmonkey has your back. Especially traveling in Europe! We will all break free like he did, and you are so close. The numbers and columns may seem daunting but they're just little amounts. Time moves swiftly and I suspect our CFS will mostly, at least significantly, resolve when we are a year out from the meds completely. 

 

I will write more on that soon but there is evidence. I found this site because of CFS patients who miraculously healed after getting off their AD. Imagine! 

 

Joy to Queensland,

 

Out2C

[Miracle123]

Hi Carmie, im just come in to see how yours progress.....Hope everything will going well and smooth in your cross taper. Thinking of you and hugs from me.🤗

[eymen23]

14 hours ago, Carmie said:

Just documenting the calculations for my crosstaper. Brassmonkey double checked my calculations, and I’m good to go. I’ll probably start next week some time. 

 

Amazing! Great it's all figured out and you're so organised. Keep up the great work!

[Tanha]

Good job, carmie. go ahead.

[Tarheel109]

With your attitude and positivity, nothing can stand in your way! Keep smiling 😁

[Carmie]

Thanks for your encouraging messages @neroli @Rabe @Out2C8383 @Miracle123 @eymen23 @Tanha @Tarheel109

 

It certainly feels great once calculations are done. I see many more calculations ahead in my future. 😄

 

I hope you all get through another day as best you can. I finally have the strength to get out n about today. My bed 🛏 is kind enough to set me free for a change. I will take it slowly and not overdo things, I’ve gotten pretty good at pacing myself. Going to run some errands this morning, and then I’m going to an aqua park at the beach with friends. The beach, my happy place🌊🌊🌊. Yay!!!!🎉

 

Hope you all find a little bit of happiness today💚💚💚

[direstraits]

Hi @Carmie

glad you're feeling well enough to get out today, hope you have a great time at the beach! wish I were there,cold and rainy here today.

 

have a great day!

 

big hugs, ds

🤗❤️☀️

 

 

[neroli]

Hello Carmie

 

Great that you're going to get out a bit today.  I know you will appreciate it very much.

 

Thanks for your thoughts for all of us getting through another day as best we can.

 

Much love

 

Neroli 💜

[Rabe]

Oh Carmie I am SO happy to hear you got out today!!!  and to the water you love!! YAY!  Let us know how it goes!!💜

[neroli]

Hello Carmie

 

Popping in to say hello and hope that you've had another reasonable day. Oh, a colleague at work says she will give me an adult colouring book she's got and doesn't use.  I'm going to be one heck of a colour-inner!

 

love

 

Neroli 💜

[Carmie]

Hi  @neroli @direstraits @Rabe

 

How are we all doing today? Hope you’re having a bearable day. I don’t have much concentration to read but, yes, I had such fun  at the aqua park yesterday. Soooo much fun. Off course, I didn’t have the energy to do the whole obstacle course. I couldn’t stop laughing though, as everything was so slippery and if you tried to walk across things you would end up in the water. I had a blast!! I have to do that again! There’s another aqua park near where my sister lives down the Coast n I might go there next time. 

 

I couldn’t stop smiling. Put me anywhere near water n I’m in my element. We had life jackets on which was the coolest thing EVER! I jumped into the water n just floated there for ages, it took no effort, you didn’t need any strength to do that. I’m going to have to buy myself a life jacket n just float when I don’t have the strength to do anything else when I’m in water. 

 

I’m still in very good spirits about my amazing day yesterday. Was lovely to catch up with friends too, we all chilled out near the water afterwards. I want to go to the beach again tomorrow, pretty please😃🌊🌊🌊🌊.

 

I’m deciding whether to start my cross taper tonight, will decide tonight. 

 

Sending hugs🤗🤗🤗

 

Edited January 7, 2019 by Carmie
Removed white space

[Steve61]

Hi Carmie. That’s a great post ! Glad to hear that you had such a great day.Thats all any of us want , I think. Peace and happiness. Posts like that one give out lots of encouragement to carry on this journey. x

[Carmie]

11 hours ago, Steve61 said:

Hi Carmie. That’s a great post ! Glad to hear that you had such a great day.Thats all any of us want , I think. Peace and happiness. Posts like that one give out lots of encouragement to carry on this journey. x

 

Hi Steve, 

 

I’m glad you enjoyed reading my adventures yesterday 😄. It was so much fun. I hadn’t been to the beach in ages as I haven’t been able to get out and about much. I couldn’t stop laughing at the aqua park because everything really is so slippery. I was crawling across things on my stomach because a lot of the time I couldn’t stand up because of the slipperiness. I will definitely have to go to another aqua park. I need more giggles n laughter. 

 

I must go to Wet And Wild one day too. It’s a massive water park with long slides and other fun things to do. I’ve never been there. It’s not at the beach though, and it’s chlorinated water, not sea water. They also have a water park at Dreamworld, which is a big amusement park. Yesterday’s adventure has put me in a good frame of mine. I’m all for making happy memories when you’re able as they end up sustaining you, knowing you’ve got more of such fun times ahead.

 

When I’m in waves I can think of all the fun times I’ve had, and look forward to more of such. I hope you’re coping okay today.

 

Sending hugs🤗

 

 

 

 

[ChessieCat]

36 minutes ago, Carmie said:

I’m starting my crosstaper tonight.

 

At least you know you have the number correct.  Put your lab coat on.  Time for some pill crushing ... this looks a bit like a mortar and pestle 🤣     🍗   🥥     and so does this:   💣    and the rest of the equipment:     💊     ⚗️      🧤       👓       👩🏻‍🔬