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Kristine

Dearest @Rosetta, @Rabe and @Marmot, thank you for all your messages. It was such an achievement to make dinner for hubby. Marmot, I haven’t been able to make it to the water for many months now. Symptoms prevent it. I’m not steady on my feet and the fatigue has become beyond comprehension. Muscles have wasted away. Insomnia doesn’t help. Cognitive function is awful. I’m hibernating in my bed this winter whist I reduce the diazepam. It is brutal. However, I’ve been sick for so long now, I have accepted my vast limitations.  I’ve forgotten what it is like to feel well. Perhaps this helps with acceptance. I feel so detached that I sometimes wonder if I am real. Such a bizarre and utterly devastating experience.

 

love to you all, K xo 

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Marmot
1 hour ago, Kristine said:

Dearest @Rosetta, @Rabe and @Marmot, thank you for all your messages. It was such an achievement to make dinner for hubby. Marmot, I haven’t been able to make it to the water for many months now. Symptoms prevent it. I’m not steady on my feet and the fatigue has become beyond comprehension. Muscles have wasted away. Insomnia doesn’t help. Cognitive function is awful. I’m hibernating in my bed this winter whist I reduce the diazepam. It is brutal. However, I’ve been sick for so long now, I have accepted my vast limitations.  I’ve forgotten what it is like to feel well. Perhaps this helps with acceptance. I feel so detached that I sometimes wonder if I am real. Such a bizarre and utterly devastating experience.

 

love to you all, K xo 

 

Boss, this sound terrible, I'm really sorry that the pain has reached this level. 

Are you able to listen to music? I rediscovered an old song, and would like to send it to you. 

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Kristine
1 hour ago, Marmot said:

Boss, this sound terrible, I'm really sorry that the pain has reached this level. 

Are you able to listen to music? I rediscovered an old song, and would like to send it to you. 

Dearest sweet Marmot, it is lovely to hear your ‘voice’ again. I’m able to listen to some music, not very loud though. I’d love to hear the old song you rediscovered. Much love to you from across the pond. K xo

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FarmGirlWorks
5 hours ago, Kristine said:

It was such an achievement to make dinner for hubby.

Seriously: that is amazing. I mean, I think cooking anything is a great achievement 😛 so extra big when you do it in the (temporary) state you're enduring. NTMF.

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Kristine
20 hours ago, FarmGirlWorks said:

Seriously: that is amazing. I mean, I think cooking anything is a great achievement 😛 so extra big when you do it in the (temporary) state you're enduring. NTMF.

Thank you dearest FGW, I admire you so much. My husband printed out your poster and put it on our fridge so anyone visiting the house can get an idea of what I’m going through. I was also so impressed by your interview. Thank you so much for sharing...you are such an inspiration! Much love K xo

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Kristine

Going to be working on the following.....so tired of not being heard, understood or shown compassion.

Be the person who breaks the cycle. If you were judged, choose understanding. If you were rejected, choose acceptance. If you were shamed, choose compassion. Be the person you needed when you were hurting, not the person who hurt you. Vow to be better than what broke you—to heal instead of becoming bitter so you can act from your heart, not your pain.” 

Lori Deschene

 

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neroli

Hello Kristine

 

That's such a wonderful sentiment; to act from your heart not your pain.  I understand not being heard, understood, or shown compassion in things that happen in my situation.  I especially get that from the medical "profession" - they don't have a clue at times.  And that makes me angry - but the trouble is that if I get angry I spike my symptoms, so I have to keep it moderated.  The piece you have copied above lends itself well to that.

 

You are so much a brave, brave woman and coping really the very best you can.

 

Congratulations on making dinner - it's quite a job getting that together.  xxx

 

Neroli 💜

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FarmGirlWorks
Posted (edited)
On 7/12/2019 at 6:25 PM, Kristine said:

My husband printed out your poster and put it on our fridge so anyone visiting the house can get an idea of what I’m going through.

That is a great idea -- bravo to your husband and such relevant support. I feel like getting a t-shirt printed with it on (of course, people would be staring at my chest trying to read it so maybe not such a great idea). Even with the art and interview, people still forget and I've actually been told in the last week that, after saying that my nervous system is a bit stronger than last year,  "if you will health, it happens." Ugh. I told this person that my nervous system is akin to their arthritic hip: if you do gentle exercises and stretch it maybe it will get better or stabilize. But if you run a marathon tomorrow, you'll hurt it. Same goes with the nervous system. Small stretches and gently pushing it strengthens. But if you get a bad news that freaks you out, then that hurts.

 

I am really into analogies this week. Not sure if that one works but I am just sick of explaining that WE ARE SICK RIGHT NOW.

 

On 7/12/2019 at 6:31 PM, Kristine said:

Be the person who breaks the cycle. If you were judged, choose understanding. If you were rejected, choose acceptance. If you were shamed, choose compassion. Be the person you needed when you were hurting, not the person who hurt you. Vow to be better than what broke you—to heal instead of becoming bitter so you can act from your heart, not your pain.” 

 

Love, love, love this. Thank you.

 

Edited by FarmGirlWorks

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Carmie

Hi Kristine, 

 

Just popping by to let you know I’m thinking of you.Yay for being able to make dinner, that was quite an achievement.🎉 A gold star for you.💚

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Marmot
On 7/11/2019 at 10:08 PM, Kristine said:

Dearest sweet Marmot, it is lovely to hear your ‘voice’ again. I’m able to listen to some music, not very loud though. I’d love to hear the old song you rediscovered. Much love to you from across the pond. K xo

 

Thanks Kristine :)

Here's the song, to remind you you're not alone. Your bottle has company.

The lights are flashing in the video but maybe you can just listen.

 

 

 

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Kristine

Thank you everyone for your messages, I’ll respond when I’m able. Just can’t think adequately. Marmot, I enjoyed the Sting video...always loved that song and so aptly relevant to this situation we find ourselves in. I’m trying to taper the diazepam more rapidly due to a paradoxical reaction but that doesn’t spare me the horrific WD. I’m now down to 1mg. My symptoms are so vast and strange that I can’t even put them into adequate words at the moment. I’m so utterly exhausted but I’m so pleased I have significantly reduced my psychotropic drug burden. Two years ago I was taking 7 psychotropic drugs...now down to 2 which are at much lower doses. I spend my days curled up in bed. 

 

Much Love to you all. K xo

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wantrelief
1 hour ago, Kristine said:

Two years ago I was taking 7 psychotropic drugs...now down to 2 which are at much lower doses.

Oh wow, this is an amazing accomplishment, Kristine! I am constantly amazed by your perseverance, strength and courage.  You are an amazing woman.  I am thinking about you, as always.  Much love, WR. 💖

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Rosetta

(((Kristine))). Hang in there.  L ove, Rosetta

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neroli

Much love to you Kristine

 

Neroli 💜

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Rabe

You have some a long way with the meds Kristine....I so wish I could give you more than thoughts and prayers from afar.  Continue to take care of you and get better soon I hope!  Love and hugs to you Kristine!!💜

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Kristine

Thank you dearest @wantrelief, @Rosetta, @neroli, @Rabe For thinking of me. You are all such beautiful and strong people. I came across the following song that Rob Thomas wrote for his wife who was chronically ill with an autoimmune disease. Seems so appropriate. It makes me so sad that my husband and son have to witness my desecration from these drugs. 

 

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neroli

Hello dear Christine

 

It took me some time before I had the courage to play the song you posted - music can bring on some grief and despair - but I did it the other day and it is so beautiful.  I did have a few tears as it is so poignant, particularly for you and your family facing such distressing times.  I am so sorry, Kristine.  Wish you the best with all my heart.

 

Neroli 💜

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Rabe

I cried...thank you for sharing Kristine.  You are beautiful!💜

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Rosetta

I haven't seen it yet.  Not sure Im ready, . Thank you anyway.  I hope you are all right.  (((Kristine)))

All my love, R

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FarmGirlWorks

Sending you warm vibes @Kristine... listening to the song you posted -- heavy sigh.

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neroli

Hi Kristine (sorry I misspelled it last time)

 

Just popping in to say hello and send you best wishes.

 

I haven't been the best at visiting people's threads of late but wanted you to know that you are in my thoughts.

 

Neroli 💜

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Gemma92

Hello Kristine! I have a very similar story to yours. I too am very kindled and was put on many drugs when I was suffering from a Lexapro withdrawal. I was cold turkeyed off of like 5 drugs and I'd say I was on at least 16 all together! It's been a year now and I still have a drug to taper off. It's a nightmare! 

I have many horrfic symptoms and am pretty much disabled now with 0 windows. But knowing I am not alone in this helps me out a lot! 

 

-Gemma

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FarmGirlWorks

(((((((( @Kristine ))))))))

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Kristine

Dearest @neroli, @Rabe, @Rosetta, @FarmGirlWorks, and @Gemma92 (Gemma I have replied on your thread), you are all so thoughtful to visit me here despite all your own struggles. I am so thankful. I am now down to 0.4mg of diazepam and am pleased to report I am doing a little better. Head pressure has eased, deep dark depression has lifted significantly and I’m managing to sleep a few more hours. The vertigo has also eased a little. Showering is a little easier. Nausea comes and goes. My worst symptoms are currently, debilitating fatigue, excessive sweating, internal agitation/vibrating /trembling, cog fog molasses brain, muscular pain, burning skin and the usual extreme sensitivity to stimuli...mainly noise and light. If I get triggered all my nerves fire and I suffer through painful electrical  currents running through my brain and body. It takes hours to settle. I’m managing my symptoms reasonably well with gentle self care and compassion. 

 

Thinking of of you all. K xo

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wantrelief
1 minute ago, Kristine said:

pleased to report I am doing a little better

Oh Kristine, this is such wonderful news!!  

 

2 minutes ago, Kristine said:

I’m managing my symptoms reasonably well with gentle self care and compassion. 

You always astonish me with how amazingly well you are managing everything you are going through.   You are one incredible woman, my friend.  

 

Lots and lots of love, WR. 💖

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Kristine

Thank you for your ongoing support my dear friend @wantrelief ....I really have accepted this state I’m in. I wouldn’t have thought that was possible a few years back. 

5 minutes ago, wantrelief said:

You are one incredible woman, my friend.

Takes one to know one 😉💖

 

Love and hugs to you, K xo

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neroli

Hello dear Kristine

 

It's good to hear that some of the symptoms have eased off - thank goodness.  I am amazed, too, at how you are coping - there's hope for everyone if you have managed to get to an acceptance of the state you are in, which you wouldn't have thought possible a few years back.  It shows that you have developed your strength as you've gone along.  A positive message to us all.  Thank you.

 

I wish you continued improvement, you are an inspiration.

 

with love

 

Neroli 💜

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Kristine

Thank you dearest @neroli for always being such a beautiful and encouraging force here on SA. I have been reading your thread and know you have been dealing with extra stressors on top of WD...which is never easy 😕 I am amazed by your strength to even be able to work whilst enduring WD. I find you inspiring. 

 

With Love, K xo

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neroli

Thank you so much, Kristine.  That's lovely of you to say that.

 

I've been a bit slack on SA recently.  

 

Work is no more, I have been medically retired, as of next week probably when the paper work is sorted.  They would not allow me to work from home all the time.  In part, it is a relief as it was getting very hard for me to put in the hours and keep up the focus on problem-solving and being in the loop.  I'm hoping this will mean I have more time to taper and take care of myself - despite some fears of not having my time taken up with something purposeful.  I have ideas of what I might do, as long as I'm not too symptomatic.  And of course I'll be living on a benefit - but then, I'm grateful that there is some state assistance.

 

Wish I could work out what is making my legs worse and worse - being on a particular drug, or the tapering off one (or any) of them.

 

Anyway, we do the best we can day by day.

 

with love

 

Neroli 💜

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Kristine

Spoke to soon. Head pressure and head pain back today. The hot knives slicing my brain sensation. At least I had a two day break from it. This experience is so unpredictable and random. sigh 😔 

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Rosetta

Kristine!!!  You are having Windows! I'm thrilled.  This will continue.  Your strength and perseverance is paying off.  Except for diazepam the only drug you take is fluox 20 mg? I hope your family is well.  It's wonderful to see you being able to visit threads.  Perhaps your swims in the Tasmanian Sea will begin again soon. 

 

I'm feeling landlocked myself.  It's an odd feeling to be surrounded by land for miles and miles.  We are in Madrid with an enormous park across the street.  We have been too tired from jet lag to visit the park.  Just getting groceries and finding various random things has been our main focus other than visiting the school for my daughter which is 30 minutes away by metro.  Some people are hostile to us here even before we speak.  It's strange to feel that I don't belong, but I have been feeling that way in the last 2 years in the U.S..  So, it is a familiar feeling.  

 

You are still experiencing akathisia, I see.  It's very odd when that becomes less frequent.  You will start to understand it better when you have a contrasting feeling of existence.  My hope is that that begins to happen soon.  For now, I' m glad you feel you can  feel acceptance.  I'm still working on that.  That skill will be a positive result from this madness.

Love, Rosetta

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Kristine
1 hour ago, Rosetta said:

Kristine!!!  You are having Windows! I'm thrilled.  This will continue.  Your strength and perseverance is paying off.  Except for diazepam the only drug you take is fluox 20 mg? I hope your family is well.  It's wonderful to see you being able to visit threads.  Perhaps your swims in the Tasmanian Sea will begin again soon. 

Oh thank you dearest Rosetta. I feel like the window has opened a tiny crack and it has helped me feel I little more optimistic about the future. Usually I don’t dabble in thoughts of the future at all. Yes, 20mg of fluoxetine is my last drug. Thank goodness. 

Spring has just come to Tasmania and the days are a little warmer...I hope to made it into the ocean by summer. 

1 hour ago, Rosetta said:

You are still experiencing akathisia, I see.  It's very odd when that becomes less frequent.  You will start to understand it better when you have a contrasting feeling of existence. 

Thank you for saying this Rosetta. I’ve been living with akathisia for so long now it is hard to imagine it not being there. It is so awful but I’m managing it much better than before. 

1 hour ago, Rosetta said:

We are in Madrid with an enormous park across the street. 

Im still trying to imagine you in Madrid! I think you are truly amazing to go on this adventure with your family! Wow! I’m sure when the jet lag settles you will make it to the park. I hope your daughter is excited about school. Not so good that some of the locals are hostile 😕 I’m hoping it is just the minority. 

 

Sending you a big hug from Tassie to Madrid. K xo

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neroli
7 hours ago, Kristine said:

Spoke to soon. Head pressure and head pain back today. The hot knives slicing my brain sensation. At least I had a two day break from it. This experience is so unpredictable and random. sigh

 

Damn, I'm so sorry to hear this.

 

I hope you will see more days of breaks from it soon.

 

💜

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Kristine
3 hours ago, neroli said:

Damn, I'm so sorry to hear this.

 

I hope you will see more days of breaks from it soon.

Thank you dearest Neroli, today has slowly taken a turn for the worse. The nature of this beast. So cruel 🙁

Thinking of you, K xo

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FarmGirlWorks

@Kristine: dude! You are seeing random acts of kindness from withdrawal madness. Yes, there are a lot of symptoms as well but, for me, when there is even a glimmer of healing no matter how short, I know it will eventually get less and less and less until (knock on wood) recovery comes. I am so happy to hear this and you are a rock for swimming thru the rest of the WD sludge.

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neroli
On 9/6/2019 at 12:33 PM, Kristine said:

Spoke to soon. Head pressure and head pain back today. The hot knives slicing my brain sensation. At least I had a two day break from it. This experience is so unpredictable and random. sigh

 

Damn, I'm so sorry to hear this.

 

I hope you will see more days of breaks from it soon.

 

💜

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