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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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