Kristine: not alone

[neroli]

I wish I could box up a ton of inflatables to send to you to help you get your head further above water. I'm so sorry you are struggling.

 

Hanging in there with you

 

Neroli 💜

[Rabe]

Always thinking about you Kristine!!  Love and hugs.  💜

[Carmie]

Hi Kristine, 

 

Just wanted to pop around and send you hugs. Might send you some floatables  like Neroli too. 💚

 

 

[Rosetta]

((((Kristine)))

[Kristine]

Thank you @neroli, @Rabe, @Carmie And @Rosetta for your lovely thoughts and messages. I could do with a few inflatables to keep me above water. 

Update: I’m very unwell and remain bed bound. My symptoms are relentless and I would just like to be able to sleep until it is all over. The head pressure is excruciating. Along with this I have a sensation of hot knives slicing my brain. Muscular and joint pain continue. Vertigo is making showering extremely challenging. I’m frightened I will fall. Sensitivity to light and sound makes this hell even more debilitating. Nightmares, insomnia and nighttime sweating continue....and of course the never ending bone aching, flu like fatigue never leaves. Depressed mood and chest crushing/stomach churning anxiety are daily companions. As are my cognitive difficulties. Skin burning and rash on my arms continues. I cut out cheese as suggested by Shep on my Benzo thread, thinking I may have histamine intolerance. Unfortunately this hasn’t helped. 

 

Im tired of living in this hell. K xo

[neroli]

Hi Kristine

 

Thank you for posting, it must be such an effort with all the symptoms you are experiencing.  It is heartbreaking to read you have so much to cope with.  No wonder you are tired of it.  I hope you have a break somewhere/sometime where you can feel more well.

 

Am with you and sending love and strength (though you have that)

 

Neroli 💜

 

 

 

 

[Kristine]

Thank you @neroli I know you are struggling as well and it also breaks my heart. I think back to when I started my first antidepressant, when I was going through horrendous personal trauma and suffering and having normal human responses to this. I thought I was being responsible...seeking help and diligently following the advice and taking the prescribed medication. From there, it has been a downward spiral. I just shake my head in disbelief and disgust. Thank you for your care and kindness Neroli. Much love. K xo

[neroli]

2 minutes ago, Kristine said:

I think back to when I started my first antidepressant, when I was going through horrendous personal trauma and suffering and having normal human responses to this. I thought I was being responsible...seeking help and diligently following the advice and taking the prescribed medication. From there, it has been a downward spiral. I just shake my head in disbelief and disgust.

 

yes, I get the disbelief and disgust - how the hell can the "medical care" system be so hideously dumb/ignorant/deceitful?  I think we've touched on this before.

 

if only we could all turn the clocks back - but we can't and as unreal as this situation seems, we do our best to find our own way out of this wreckage - the "carers" seemingly having washed their hands of us.

 

You are doing are doing your very best.

 

love to you

 

Neroli 💜

 

 

[wantrelief]

I am so very sorry you are so unwell, my friend.  The symptoms you describe sound excruciating and it really pains me that you are suffering like this.  I am, as always, in awe of your strength and courage as you endure this torture.  My heart is with you, Kristine.  Much love, WR.  💖

 

 

[Rabe]

Oh Kristine...I read your post and 😢.  I SO am with you in my heart!  And I SO pray that there will be a respite for you again soon...where you can feel some relief from all these overwhelming symptoms!!  You are an incredible inspiration, Kristine...and continue to be so kind through it all.  Be kind to yourself Kristine...take good care of you!  

On 6/16/2019 at 8:47 PM, Kristine said:

I thought I was being responsible...seeking help and diligently following the advice and taking the prescribed medication. From there, it has been a downward spiral. I just shake my head in disbelief and disgust.

My children thought this was the answer...and now dont know what to do that I am not functioning well.  Yes...lots of disbelief!!!  Im SO sad these are still being given to people as often as they are and in the quantities and varieties.  It is very sad and very wrong!

Love and hugs to you dear Kristine!  💜

 

[neroli]

💜💜💜 Kristine.

 

My thoughts are with you.

 

with love

 

Neroli 💜

[Kristine]

Thank you @neroli, @wantrelief And @Rabe for all your beautiful messages. You are all in my thoughts everyday. I just wish I had a clear mind and some energy to respond adequately. I’m so sorry 💖

Update: I continue to decrease the diazepam because after I take it in the evening I feel much worse. I’m now down to 1.4mg (from 10mg). One positive I can report is my deep, dark, depressed mood has been lifting and I rarely have SI. The clawing anxiety in my stomach and chest is worse (much worse at night) but I’m managing to calm the beast with breathing exercises, relevant podcast’s and distractions. I remain bed bound. Sweating, terrible fatigue, muscle pain, head pain/pressure, tremors, buzzing throughout my body (sometimes I feel like my blood is carbonated), electrical currents, pins and needles, burning itchy skin.I have developed a strange SWISHING/WHOOSHING noise in my head, it is similar to the sound of a seashell pressed against ones ear. I also have intermittent tinnitus. DP and DR have become dominant. I feel very detached.  Strangely, this is not an unpleasant experience. It allows me to float, rest and get some sleep. 

 

Love be to you all, K xo

[wantrelief]

Bravest Kristine,

 

2 hours ago, Kristine said:

One positive I can report is my deep, dark, depressed mood has been lifting and I rarely have SI.

That is really great to hear!  What a relief it must be to have those symptoms lift.

 

Perhaps the DP/DR is a blessing allowing you to be detached from what sounds like such a immensely challenging time.  Your ability to cope through this all is truly amazing and I am in awe.

 

You are in my thoughts, as always, my lovely friend.

 

Much love,

WR. 💖

[neroli]

Hello dear Kristine

 

I want to echo wantrelief's sentiment that it is so good that the depressed mood has lifted and the SI is rare.  I know there's a bunch of other really nasty stuff you are having to cope with but getting remission from those two gremlins is wonderful.

 

I am so impressed that you are managing the clawing anxiety with your breathing/distraction etc.  -  it's so difficult for me to do this that it is invaluable hearing it from you and inspires me to use those tools more effectively if I can when I am in a desperate patch.

 

Hoping you get some more breaks.

 

much love to you

 

Neroli 💜

[Kristine]

21 hours ago, wantrelief said:

That is really great to hear!  What a relief it must be to have those symptoms lift.

Thank you my dear friend, yes it is a relief. It is a blessing to have some relief from these symptoms.

21 hours ago, wantrelief said:

Perhaps the DP/DR is a blessing allowing you to be detached from what sounds like such a immensely challenging time.  Your ability to cope through this all is truly amazing and I am in awe.

It is all very strange. It is a blessing even though I find this experience particular experience rather odd. 

 

You  are in my thoughts as always WR 😊

Much love and (((hugs)))) K xo

[Kristine]

Thank you for your lovely message Neroli, 

17 hours ago, neroli said:

I am so impressed that you are managing the clawing anxiety with your breathing/distraction etc.  -  it's so difficult for me to do this that it is invaluable hearing it from you and inspires me to use those tools more effectively if I can when I am in a desperate patch.

This has been a work in progress for me.... many years of practice. It’s not easy, I know.  However, I’ve found I do need to check in with body and mind on a regular basis throughout the day. No matter how uncomfortable.  This allows me to catch the anxiety before it turns into a volcanic lava dripping demon. Catching it early makes it easier for me to calm it down. Not always successful but every hiccup is a lesson learnt. 

 

Much love to you, K xo

[Rabe]

Love and hugs to you Kristine!!  💜

[Carmie]

Hi Kristine, 

 

I’m sorry you’re still struggling so much, but it was good to read that your deep depression has lifted a bit and you hardly ever get SI now. We get so many weird sensations in our body from the withdrawals, don’t we? Years ago before I knew it was the meds I thought there was something terribly wrong with me. 

 

I’m sorry you get vertigo, I’m always faint as I have really low blood pressure but I’ve only had vertigo once. It was brought on by extreme stress, the room was spinning and I was vomiting. How often do you get it? It’s so hard to even stand up when you have it.

 

I’m glad to hear you are doing well with the floating despite all you’re going through, sending hugs to you🤗

[neroli]

Hello Kristine

 

Just popping in to say hi and send best wishes.

 

On 6/26/2019 at 12:24 PM, Kristine said:

I do need to check in with body and mind on a regular basis throughout the day. No matter how uncomfortable.  This allows me to catch the anxiety before it turns into a volcanic lava dripping demon.

 

I will definitely have to practice more to get to this level of ability.

 

much love

 

Neroli 💜

[Rosetta]

You are so amazing.  I hope you know how very important you are.  You helped me through a very hard time, Kristine.  I wish I could do that for you.  I wish I knew how.  You inspire everyone here to keep going.  All my love, Rosetta

[FarmGirlWorks]

On 6/24/2019 at 5:08 PM, Kristine said:

DP and DR have become dominant. I feel very detached.  Strangely, this is not an unpleasant experience. It allows me to float, rest and get some sleep.

Hi @Kristine, catching up on the person (you!) who has been so supportive. Just wanted to chime in that your take on DP/DR seems right on. I kinda think it is a protective measure against too much anxiety -- at least has been here. I feel like it is a breaker in my anxiety fuse box and just flips off when life gets too hairy to handle. Got it bad now and, like you said, it allows me not to care much.

 

Sending love from across the world ❤️

Edited July 4, 2019 by FarmGirlWorks

[Kristine]

Thank you @Rabe, @Carmie, @neroli, @Rosetta And @FarmGirlWorks for thinking of me and all your kind messages. 

 

On 6/27/2019 at 7:07 PM, Carmie said:

How often do you get it?

I get vertigo frequently Carmie. Moving my head too fast or looking up can set it off. I’m aways dizzy and feel off balance. However, I also used to have it when I was lying down. This has thankfully improved. Nausea often accompanies the vertigo. Not as bad as it used to be.

On 7/4/2019 at 10:05 PM, Rosetta said:

You are so amazing.  I hope you know how very important you are.  You helped me through a very hard time, Kristine.  I wish I could do that for you.  I wish I knew how.  You inspire everyone here to keep going.  All my love, Rosetta

Thank you Dearest Rosetta, You are amazing! Your words are always so powerful and inspiring. You do more for me than you will ever know. I just wish I was able to write on your thread like I used to. It will happen. 

On 7/5/2019 at 7:51 AM, FarmGirlWorks said:

Just wanted to chime in that your take on DP/DR seems right on. I kinda think it is a protective measure against too much anxiety 

Oh FGW this is so true. I think it is protective...I often feel like I’m having an out of body experience. It’s weird. It’s survival. And that’s ok...as you said it allows you “not to care so much”.

 

update: I’m not sure what to write anymore because I’m just trying to get through each day. My symptoms remain the same. They change from day to day, clusters of symptoms become more dominant then fall into the background when another cluster of symptoms become more dominant. Today it is head pressure/pain, ear pressure, tinnitus, very bad muscular pain, dizziness, sweating and tremors. The body aching fatigue, brain fog, dull headache and sensitivity to sound and light are daily companions. I’m hibernating. I don’t like being around most people. Just some quiet time with my husband and son in my dark bedroom. I eat all of my meals in my room. 

 

My biggest accomplishment this week (month!) was making my husbands birthday dinner. I couldn’t bear the thought of him coming home from work on his birthday and having to cook. Psychologically I felt good that I had achieved something for someone I love dearly. Physically I was a mess. I’m still paying the price, but it was worth it. 

 

Love to you all, K xo

[wantrelief]

I am thinking about you, my lovely friend, and sending you lots of love and hugs.  💗WR

[Kristine]

8 minutes ago, wantrelief said:

I am thinking about you, my lovely friend, and sending you lots of love and hugs.  💗WR

Thank you my lovely friend, thinking of you too, much love and hugs to you. K xo 💖

[Rosetta]

Kristine, You made dinner for your husband!!!  Wow.  That must have been so nice for both of you.  I'm happy you could do that. -Rosetta

[Rabe]

I am so happy to hear you could celebrate your husbands birthday as you did! WOW!  

Reset and take care of you dear Kristine!  Love and hugs to you!💜

[Marmot]

Hello Kristine, It's been awhile. Glad to hear that the burning skin is improving, and sorry about the awful new sensations. Do you ever go in the water anymore? I think that you will get better with time. Thanks for writing about it even though you're feeling sick. ❤️

 

 

[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 

[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. 

[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

[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.

[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

[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

 

[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 💜

[FarmGirlWorks]

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 July 15, 2019 by FarmGirlWorks

[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.⭐️💚