18 - 30 Month Plus Group

[[...]]

Sounds like we were all down the rabbit hole yesterday then ugh!!

 

I spoke to Ian Singleton in despair (yes I know how lucky I am). I'm just leaving work now and I will post what he said to me when I get home. honestly I was crying like a loon. I totally get the dry heaving Drew 

[[Mi...]]

Oh Thank you Marj!  It's so nice to hear what Ian has to say!

 

 

Marj, somehow someway we are going to kick this!

[[dr...]]

Marj you are so damn lucky!!!  I paid 6.99 for an ebook on migraine relief yesterday in my misery.   Today I am like what did i do that for.  The desperation is huge when we are getting hit.

[[so...]]

I wish I had all the $$$ I spent on supplements trying to relieve my symptoms.

[[dr...]]

Marj...we're waiting....

[[...]]

I'm so sorry I have not posted this till now. I got home from work and my brain was mashed, could not think. Much better now!!

 

I spoke to Ian actually twice yesterday it was such a crappy, HORRIBLE day and I feared I was disappearing down the hole. When I said it's so bad, he said it will be. It can be as bad if not worse at times at this stage until it 'turns'. He describes it much like Siggy has in his turn around. In fact whilst i was listening to him I though omg Siggy has reached that point. I've spoken to all of them at Bristol and they all say it's bad until the end and then you know you're getting somewhere. When I say it feels so permanent and I'll never get well he is really quick to say, oh, you will, every single person says or has said that and everyone gets well again. you can tell in his Voice that he has heard everything, I was totally sniveling and rambling the second call and he is not phased by it at all. He knows that we need reassurance constantly and that is universal in this. They have many people at the moment around 20 -24 months and he says they are ALL like me, saying exactly the same things. When people get to around 2 years give or take a few months they don't call as much and they just get better, EVERYONE. Obviously we are all different in some symptoms and some are the same. He is so knowledgeable and i know I have told you before that he has done this for 30 years and helped so many. I am always saying that I'm going to have a breakdown and again he quickly says, you won't, no one ever does. ''It's the most horrible and hardest thing you will ever do but you will get through it, I promise''.

 

I hope this makes sense as i have had to quickly type it. I have to go pick my daughter up. I didn't want to leave it till later. I really hope this helps. if i remember anymore I will add 

[[dr...]]

Thank you for posting.  I can't read stuff like this enough. 

 

I worked my day and got hit w a bad headache when I got home. It ramped up so quick I got panicky.  Settling in to be one w the pain now. 

[[Wo...]]

Thank you so much for that post marj, and thanks to everyone that keeps finding the energy to post updates about how you're doing. It helps so much to know that we're sharing a common experience even though our sx vary slightly. Of course I wish none of us were going through it in the first place. I hope you all know what I mean!

 

I'm noticing the group has somewhat shifted on this thread. There's a handful of folks I don't see posting anymore. I hope that's a good sign. Maybe it means we're next? (Hopefully)

[[Mi...]]

Oh Marj thank you for sharing!

 

I have been struggling so much with this anxiety...  And just to have the hope that it will all end soon is so unbelievably welcoming....   

I am so scared that since a lot of the DR ect...  has lifted that this is just the new me?????  And that alone terrifys me to no end!  I can't live the rest of my life looking over my shoulder. With the rapid heart rate, the throat closing sensation, and panic...  I can't tell you how much your shared talks help!  Thanks Again....

[[so...]]

Jenn,

 

I'm plagued with the same "new me" intrusive thoughts.  That's all they are.  Thoughts.

 

Sofa

[[Fi...]]

Hey guys--I thought maybe since the folks who scolded me off this thread seem to be long gone, I might risk sneaking back on just to try to give you some encouragement. 

 

Everybody seems to be hanging in there and showing signs of healing, and the great part is when you can recognize those little bits of improvement and hang onto them.

 

Another BB put me onto a book called You Are the Placebo: Making Your Mind Matter.  It's really great at giving you ideas of how to put more positive, healing type thoughts into your brain and actually make this whole hellish process at least a tiny bit better.

 

No, withdrawal symptoms are not "all in your head," and we've all been so defensive on that subject because people who haven't gone through this simply don't know what they're talking about, right?  But as you  start to get well--and you are all in the zone now--it's helpful embrace as much optimism as you can.

 

I used to spend so much time lying there just thinking "Oh my God, I'm so sick.  I'm a sick person and I will always be sick.  I felt fine the other day and now here I am again, just sick sick sick."  Well, according to the author of this book, when you think things like that, you have to be careful, because your brain will believe it!

 

You know from past success stories and from Ian Singleton and Bliss Johns that WE ALL HEAL.  That's the story. It's so hard to believe when you're in the middle of it, but if you don't reinstate, your brain will heal.  Period.  So hang onto that belief and when symptoms come around, try to not give them more attention than they deserve.  For a long time when I noticed a symptom coming up again, my thought process would be "Oh, no, oh no!  It's got me again!  I'm sick again!  Now I'll probably be sick for weeks!"  But somewhere in there (and before I read this book so maybe I was letting Bliss advice sink in) I started fighting off those thoughts by repeating a different mantra:  "I have a beautiful mind and it's healing for me as fast as it can.  I have a beautiful mind and....." 

 

It has definitely helped.  Seriously, forty years ago I would have called this book complete hoo-haw, but now I've lived through so much stuff, I really see how it works.  I wrote my success story six months ago, but, like HealingHope, I've had some weird random symptoms come back at me.  A couple of instances of prolonged rapid heart rate which was so strange since I never even had that as a symptom until I was about 16 months out.  I've had my mind back for a full year, but I've had a few remaining  physical symptoms, just a monkey on my back bit of back pain.  But now I just notice it and move on.  No freaking out.

 

You are all so close.  I know it's hard to believe it will happen for  you because when  you're so desperately sick, the idea of being well just seems like the impossible dream.  But it's real.  Hang in there.  You'll get there soon!

[[so...]]

Thanks FJ,

 

Always good to hear your encouraging words.  I had a good day to day.  The best WD day so far.  Yippee!

 

Love, Sofa

[[ci...]]

Thank you , Marj, I needed to hear this today.

[[Te...]]

Thanks Marj......for sharing your conversation you had with Ian.....I was telling my husband an hour ago I should go to the ER.........I feel that terrible.....of course...he has heard me say that so many times .....lol.......but seriously ......your post gave me some reassurance for today.....wish there was someone in the US....I could call....

 

TM

[[Ko...]]

FJ,

Good to see you post here again. I'm still struggling at 26 months out, so any advice you have to give I'm willing to try. It sounds like you're able to live your life again with an occasional set back. I'm sure those too will eventually leave and you'll be 100%.

 

I'm thinking of buying the book, but until I do, what are some of the positive statements you told yourself during the day. Do you just verbalized them or write them down?

 

Also, please PM me the complete title of the book.

 

Thanks,

Korbe

[[Mi...]]

FJ,  THANKYOU!  Please stop by more often, it's so very encouraging...

 

Korbe,  I am going to be 24 months on February 1st.  I am only a bit behind you...  I know it's discouraging, keep going. We are going to get there!

[[Fi...]]

Thanks, Miss Jen and Sofa. 

 

Korbe--I see no reason to keep the book title private!  It's You Are the Placebo: Making Your Mind Matter, by Dr. Joe Dispenza.  Apparently he has some YouTube pieces out there along with a bunch of other books.

 

Since I'm so close to 100% healed, what I say to myself along these lines is pretty tame but it's like, when I wake up in the morning I'm usually pretty stiff.  But instead of focussing on that, I think how grateful I am that I had a solid night's sleep, when I know so many here on the BB board would kill for that.  I tell myself that I'm getting on my bike and doing my yoga and certainly that will get the kinks out.  And it does!  (This is instead of thinking Oh, gosh, I'm so stiff, I don't want to get on the bike.  I guess I'm still in a wave)  I have my yoga room tricked out with everything lovely and pleasant and inspiring to look at  and I play music that's actually called "Music for Positive Thinking."  It's the repetition of this every single day that's so good.  I treat myself like somebody who's healing, like I would want to treat my daughter, say, if she were in the situation.  I'd want to set up everything to be as encouraging as possible.  I noticed the good effect this was having on me months ago, long before I read this book.  I would just look around while doing my yoga and think, "Gee, I must be worth healing and hanging onto if somebody has made things so nice for me like they expect it could happen."  (Faking myself out, in other words, since it was me making things nice!)

 

I say, "I'm a well person.  I'm going to do what a well person does!"  and then try to do it.  Yeah, I know,  earlier I simply would NOT have been able to do this.  I was on the couch with fatigue, period.  I could not do these things.  But in the book he talks about using your mind to imagine ahead what it will be like to be well and, in doing do, you use your brain to prep your body for being well.  We've all been so sick for so long, we really have to change our mindset to think and act like well people again.

 

But hey, he took a whole book to explain it, so that's about the best I can do here!

 

I really think surely a lot of you are going to be seeing great improvements soon.  Just don't be disappointed if you don't heal all of a sudden like Lost Dog.  Everyone wants to be like him, but he's the only success story I've read where it was really like that.  I think what HealingHope and I have experienced is probably more typical.  But once you get those solid windows, you can see that it's happening and it'll be a little easier to hang on.

 

 

 

[[Wo...]]

Thank you so much for the pep talk FJ. I can't hear that kind of reassurance enough from people that are further out. Just today I've been having those thoughts, "Oh no here comes a bad wave again." I'll try being a little more positive. Thanks for the reminder.

[[Fi...]]

You're welcome, Wondernova.  I'm just grateful to finally in a place where I can confidently remind others that they will indeed get well!

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FJ,  welcome back!!!! I was delighted to see you has posted on here. I have always found your posts inspiring as I've told you before. Thank you for this tip, I've just downloaded the book. This group has a lot of positivity and that is what we all do need going through this. It's hard sometimes, like you say when fatigue hits like it has today and last night I felt good. Oh well we just have to chip away and prop each other up.

 

Please stick around!   

[[Fi...]]

Thanks, Marj--you're sweet.  Good, positive thoughts are definitely what's needed.

[[Si...]]

Hi everybody,

 

Marj you know what's funny is that I use to read your posts about what Ian would tell you, and I would get encouragement from that. Funny how what he said to you is now coming true for me. It will happen for you too.

 

Drew hope your head feels better today. Everyone else, I hope you all have a smooth symptomless weekend. We're about to head to my wife's sister's farm her and her husband just bought. They moved in last week. It will be fun to get out of Atlanta for the day.

[[Ko...]]

Fan,

Thanks for the info about the book and sharing some of your positive thoughts and actions. I try to get out of my house at least once a day, usually to just go to the store. It does feel good to be out even if it is painful.

 

I'm glad you're making so much progress and appreciate you sharing with all of us still suffering. You give us hope.

 

Korbe

 

[[Fi...]]

Korbe--

[[Te...]]

Hey FJ...

Where did you find the positive music?

 

It's hard to be positive somedays....are so painful....that I can't find a positive thing to say...or how do I say this....I can say positive things but dont believe it....Im sorry to sound negative....but my symptoms have gotten worse it feels without much of a window ever....it can make some days so hard and the time just moves as slow  as a turtle....so any positive things would be helpful.....even music...just need info on how to get the music...

 

Thanks....your so helpful!

TM