Mentoring - those who are well (or better) reassuring those who struggle.

[[Fl...]]

Jackie, forgive me if I have it wrong. I thought there was something that kept you from straightening your head. Not true?

 

RapunzleBlue - welcome

[[ja...]]

You will be rapunzel, that I know for sure.

 

Flip, you might be thinking of Transverse Myelitis, which I still have, but I'm doing ok with that right now. 

 

Love Jackie :smitten:

[[ra...]]

Thank you so much Jackie. I want so badly to believe! Also your user picture is beautiful. It makes me think of peace and better times just looking at it.

 

Thank you Fliprain

[[ja...]]

Thank you rapunzel. It just takes time to heal. Sometimes I think gee whiz I already tapered for over 2 years, shouldn't I be healed by now, and most doctors think you should be too, but it just takes time. For me once I hit a year I started noticing big changes, now I'm looking for 16 month changes, then 18 and hopefully I'll be good. You'll see, keep your hope and faith.

 

Love Jackie

[[ra...]]

That is really nice to hear, Jackie! I am hoping that my expectations aren't too high for a year, but I am definitely looking forward to getting there and it would be amazing if I could experience some relief. I have to keep reminding myself that even when I'm in the thick of it, I have been able to get a little better before, and I have gone on from situations that seemed intolerable. I do need so much reassurance but getting it from someone who is going through the same trial is everything! Keep the hope and faith, for sure.   

[[ja...]]

It's very possible I'll be on here again needing some more reassurance too. We're going to make it!!!!!! The hard part is over.

 

Love Jackie :smitten:

[[Fl...]]

Yes, guys, the hard part is over! Now time to rest, trust, move, eat well, sleep well and the miracle of our body's intelligence does what it is supposed to do; heals itself.

 

Jackie, sorry I got confused and I'm so glad you are doing ok with it. 

[[Ch...]]

Someone else share an example of healed, OK? We want to let people see what it looks like so they can hold it close to their hearts.

 

I have one.

 

My grandson's 13th birthday was in March.  For his birthday he wanted to have a sleepover not at his house where the younger kids would butt in.  I offered to have it at my house.

 

So I had three 13 year old boys for 24 hours…noisy, talkative, e-devices plugged in everywhere and TV monopolized for most of the time.  Took them to the carwash with me the next day … they walked to the park while I waited for the car.  The carwash is on Main Street so there were cars and sirens going by constantly... the car wash itself was noisy and busy with vacuums blasting and people yelling over the noise.  I waited for the car outside…in the midst of the worst noise and confusion around… and felt completely at peace and relaxed.  Not a shred of anxiety.  I sat there waiting for my car for any hour… full of awareness and gratitude over the difference between then and now.

 

 

~I can still remember a time when simply the phone ringing caused me intense anxiety.

~When five minutes with the grandkids made me feel extremely edgy.

~When taking the car to the carwash would've been way beyond what my nerves could handle.

 

 

What incredible changes… 

[[No...]]

Many thanks for all the encouragement here ... truly appreciated ...

 

For myself (having a pretty lousy day) and all the others still going through this ... we just hang on ... knowing we have survived everything else so far ... and we will get through today as well ...

 

[[ra...]]

Wow Challis, that is truly amazing! I have so much sensitivity to noise right now and it seems that almost everything triggers tremendous anxiety in me. But healing is happening. Thank you for your story. 

[[Af...]]

Hi Nova, I've been following and absolutely love the imagery you use to help yourself

Challis - that time in the car wash - is that when you wrote your notes for your 3 yr update? It sounds like a special moment. Can you tell us more?

Aft

[[Af...]]

Hi Rapunzel! I'm typing on my phone and I missed your post!

[[ra...]]

Hi Aft! That happened to me earlier today, no worries 

[[Ch...]]

Hi Nova, I've been following and absolutely love the imagery you use to help yourself

Challis - that time in the car wash - is that when you wrote your notes for your 3 yr update? It sounds like a special moment. Can you tell us more?

Aft

 

Yes!!  And I still have the notes right here by my laptop!

Thanks for the reminder, I need to get ON it…

[[Fl...]]

Great details Challis. I felt like I was right there with you. I could feel the calm of it. This is the stuff that gives us hope and lets us actually wrap our minds around what it can and will be like. Thank you!

 

Does anyone have a story about being around strangers and finding it interesting and stimulating instead of scary?

[[rh...]]

This is a great thread! Thank you for starting it and wanting to encourage those that are in it or have been through it.

 

As you can see, I'm still tapering, 56 more days!

 

Through a lot of my taper it was really difficult for me to engage in conversation, so I would avoid people. I can now interact with people and laugh without it being a problem. I now like to make small talk to strangers, it's fun 😀

 

RG

[[ja...]]

Challis you are so brave, three 13 year old boys!  Thank you for sharing this, it sounds familiar. I appreciate your testimony of healing.

 

Love Jackie :smitten:

[[Fl...]]

Rhapsody, that's terrific given that you aren't even finished tapering yet! 

[[Mo...]]

Acupuncture. I highly recommend it. I go regularly for 18 years. Huge relief for withdrawals and all else.

[[Mo...]]

What an amazing thread! Thank you to Flip and everyone else for this. It wasn't that long ago, I thought I was healed. 2 months ago, I was hit with a huge wave and it last 6 weeks or so, then I had a beautiful 10 day window. Now, I am really sick again. It's baffling to me that I could have been well for so long and then this sick again. Anyway, I have a question. Have any of you had vertigo/dizziness this far out and had it go away? When I am hit with this, it's constant all day long. It's taking me down! This is the one thing that's preventing me from living life. Anyone??

[[Fl...]]

MoreChoclate - you are at two years out? Is that right?

[[au...]]

Oh, wow, AussieGal, I don't think I had heard that about flailing about and the doctor holding you. That evoked such a deep empathy in me. These are the only times I get angry about how benzos are prescribed. I mean I stay a little angry about it, but don't often flair up. But this makes me angry in the sense I would get angry if I saw a child being abused. Or an animal. It makes me want to badly hurt the abuser and protect the innocent one. It's not quite that simple with benzos. The target of my anger is not well defined.

 

I am so grateful that you only have the residual tremor. It's remarkable how our nervous systems can heal given a chance. Insightful comment about realizing more and more; it's so true. It makes me wonder what I don't know right now that I will look back on in months or years and realize how clueless I was. This makes me want to walk carefully, speak gingerly, err on the side of forbearance. Thank you.

 

Flip, as I said earlier I dont talk about a lot of the symptoms and things that happened to me.  I dont like to scare people. 

 

Re-assurance to all that are in the absolute thick of it, we do get better  yes we do  little by little every day better and better. 

[[Mo...]]

MoreChoclate - you are at two years out? Is that right?

 

I am exactly 2 years out today. I just realized that.

[[Fl...]]

Well, Happy 2 year anniversary MoreChoc! Congratulations. So as far as the dizziness, I am not personally aware of anyone having been debilitated by dizziness at two years out. It will be interesting if anyone else weighs in on it. I'm sure you're factoring in other things like diet, blood pressure, other medications, hydration, inner ear issues...all those things that can cause dizziness.

 

AussieGal - I completely respect that. Sometimes it is reassuring to people to know how bad we were and how good we are by comparison. People say "if she can recover from THAT then I can recover from this" type  of thing. But yes, the point is, we do improve incrementally. 

[[au...]]

MoreChoclate - you are at two years out? Is that right?

 

I am exactly 2 years out today. I just realized that.

 

 

Happy Birthday Morechocolate 

 

I have heard of many that started living their lives in the first year of feeling better like "a normal person", only to be knocked down by waves.

Take good care of yourself,  take it slow and be a little more gentle and self indulgent.  Remember we have a wound that you cant see and it still maybe be a little raw.