New article "Rebuilding After the Crash"

[Jody]

I have a new article up on Ncubator.ca called "Rebuilding After the Crash".

http://www.ncubator.ca/Rebuilding_After_Crash.html

 

[kolowesi]

Jody rebuilding

Great piece, you are so right about everything.

It's just wonderful to hear it expressed so perfectly, the lost forever bits, the things we started that we can never get back, the people who don't understand.

You made me cry, but it's a good cry; I will remember to rest more, when I get out of this crash.

Kelly

 

[Jody]

Kelly,

I'm glad I helped you have a healing cry. Tears are detoxifying, so I am told.

Repeat after me -- Rest. Rest. Rest.

 

[Lisa]

You know, when I read that yesterday I was having such a burned out day. Got me to rest more today for sure. I may have been surprisingly active today, but I made sure to take breaks between activities which I hadn't been doing as much.

Did get me thinking.

Lisa

 

[Jody]

Lisa,

It really is such a hard thing to learn, it seems, and have it stick.

So many of us -- maybe all of us? -- get it in the neck from this pushing and crashing at some time or another.

Goes to show, what we're dealing with is NOT depression. Because even though we have ringing in our ears, can't stand up for long, vibrate and buzz, and duck walk ... We've got things we wanna DO ....

And we have to be reminded time and again (me included -- I just had a crash) that we need to hold back and take breaks ...

 

[Lisa]

Yeah, remind me of all this again tomorrow. I suspect I'm going to be having so dang much fun that I'm not going to remember.

I am already planning on a full rest day on Wednesday in preparation for the doctor trip on Thursday. But would be good to go into Wednesday not totally tired.

 

[Jody]

I will be a pest all day tomorrow, telling you to Sit down. Lie down. Close your eyes. Have a nap. Breathe deep.

Put down the computer mouse. Get off the forums. Leave your blog alone.

I will make it a birthday to remember.

(If you could remember .... )

 

[Lisa]

Punk
hehehe

oh dear.. tomorrow's going to be a doozy with you around!

 

[Jody]

Just thinking of your health.

 

[jackie]

Having just surfaced from a major crash myself, I read with interest Jody's latest blog abour HER latest crash...it really got me thinking about my own triggers.

Four years ago I "crashed" at the very start of what was to be a small remodel on our 1950's house. It desperately needed to be done and we'd waited and saved for it.

It never happened and the new kitchen (all the appliances I'd picked from a home depot website as I couldn't stand the lights/sounds of the actual store!) I'd waited my entire married life for is still sitting tightly wrapped and boxed up in my garage. I still haven't gone and looked at them.

I've been in bed or as close to one as possible for those years. Except for dr's visits I haven't gone out for any reason - no grocery stores, movie theatres, malls, parks, art museums, other peoples homes - nada.

I started to come out of the crash about 6 months ago but got hit with a bad case of shingles (my first ever) and was told to increase my antivirals to a maximum dose...which initially made the flare-up unbearably worse.

That finally settled down and I began to read and even post a bit here. I felt sort of human again, felt like I had friends and something to look forward to. Then I went to my Neurologist for my regular appointment (he's been "tracking" me for years for a few tiny spots on my brain and a few wonky test results - no biggy).

He began to hammer me with question after question and I, of course, began to fade, started answering incorrectly...and in a most cold and insensitive way said I had MCI (Mild cognitive Impairment) which HE considered to be Pre-Dementia (and pre-Alzheimers), and wanted to start me on Aricept...to slow "the deterioration" down!

I could not convince him that cognitive/memory problems were par for the course with me/cfs - he just wasn't having any of it. I was so devastated I couldn't even meet his gaze and left.

I remember driving home (while I kept an eye out for any large brick wall I could ram my car into!) and telling me husband I'd had enough of this whole damned thing - that's it! I said...get me a gun!

My husband gently reminded me that the only thing resembling a "gun" that we had in the house was an ancient, rusty BB gun that we'd confiscated from one of the kids years ago - and that I'd need to shoot myself about a gazillion times to inflict any damage.

Naturally that diffused the situation, but I knew I was in for yet another crash and this one would be pretty yucky - and it certainly was!

I know I "talked" to a few here as I was starting to go down the rabbit hole - I offered to send some quilting instructions and fabric to Jody and I wanted to discuss some patterns with Snez (which by the way still stands - at a later date!) and then "it" started.

First the panicky, want-to-climb-out-of-your-skin and run away feeling! Then, for me anyway, the overwhelming urge to quickly clean everything you can before it hits fullforce - which immediately gets lost in the need to get your pjs on while you're still able!

These events were obviously major triggers, but I think of all the times that as careful as I was - as vigilant as I tried to be - the crashes came anyway. I rallied a bit yesterday - just in time for my follow-up visit today with the above neuro.

I did my homework this morning, researched cognitive/memory brain "malfunctions", made my "cliff notes" (which I hid in my pocket!) and spent the day reading and trying to memorize as much as I could.

I was able to rattle off impressive-sounding terminology, lots of statistics and the doc didn't find me quite so "demented" after all!

Although when he asked me if I was DEPRESSED (as he has asked me for 12 LONG YEARS always with the same answer..NO!) I answered YES!, I FINALLY AM, thanks to you! I feel that I proved a point but wonder if it was really worth the effort as I am....on the precipice of yet another crash!

And so it goes.......

jackie (sinking again)

 

[caledonia]

Have you ever tried CoQ10 for brain fog? 100mg a day helps me about 80%. Basically went from only being able to skim the headlines of the newspaper, to being able to read books if I want to (though still with some difficulty).

Driving is also much improved. I don't get lost in my own neighborhood anymore.

I suppose I ought to try increasing the amount to see if I can make things even better, but I'm ok with where I'm at for now.

I get mine at Sam's Club - it's cheaper than most sources, yet works just as well.

 

[MEKoan]

Fantastic blog piece, Jody.

Very evocative for those of us "lucky" enough to be in the know while also being so well written as to be understandable to those who are not.

May it get many, many reads!

Thank you for the awareness it will create.

Koan

 

[KC22]

Jody-

Another excellent read... I could feel every up and down through your paper. You described what we feel as we journey through a crash perfectly. Hoping we will rise again, but never really sure.

Sending you many blessings and hugs as you continue your rise upward.

Thanks for all these wonderful blogs. I always enjoy reading them..

 

[jackie]

Thanks for the CoQ10 tip caledonia...I'll try it soon. My husband is very much into vit/supplements and he's been taking this one for years (orders from puritains pride online, I think).

After about 3 months at an increased dose of antivirals I discovered I could read again and understand! I also have been able to drive several blocks to dr. appts without getting lost (any farther than that and I get turned around).

Unfortunately these improvements now appear to be temporary. It's a huge problem as I can't titrate down with the meds without a flare-up of shingles (perhaps monthly!) as well as an increase in enterovirus symptoms (and possibly losing even more ground with cognitive/memory). I'll hate that the most...it's so wonderful having a brain that works the way it's supposed to.

I also can't continue at such a high dose for much longer (its been over 3 years) without adding an immune-modulator - which I'm apparently no longer a candidate for!

Whenever I ask my dr's what will happen to me when I can no longer stay at such a dosage - they either tell me they don't have a clue or they indicate that something needs to change/improve before that time. I've tried to lower by a few mg's at a time and the crashes were really horrible.

Sorry for the rant - (it's been an unusually frustrating time and I quess I'm just getting too old for this!)... and thanks again for the tip (did you notice any gastro side effects of CoQ10 when you started it?)

jackie

 

[Sushi]

Hey Jackie,

Tough situation. Have you looked into low dose naltrexone as a very different type of immune modulator? I am taking it with good results as are a few others on this board. There is a thread on it in the general treatment section, though it is spelled wrong (the thread spells it Naltrexene--Jody, any chance you could correct the spelling so the search engine could locate it?)

There is also a lot of info at lowdosenaltrexone.org.

Very best wishes,
Sushi

 

[jenbooks]

Jackie, maybe you'd be a candidate for IVIG.

 

[Jody]

Having just surfaced from a major crash myself, I read with interest Jody's latest blog abour HER latest crash...

... it really got me thinking about my own triggers ...

... That finally settled down and I began to read and even post a bit here. I felt sort of human again, felt like I had friends and something to look forward to ...

... I know I "talked" to a few here as I was starting to go down the rabbit hole - I offered to send some quilting instructions and fabric to Jody and I wanted to discuss some patterns with Snez (which by the way still stands - at a later date!) and then "it" started ...

... And so it goes.......

jackie (sinking again)

Jackie,

That all really sucks. You have been coming through a long and terrible time. And yeah, to feel like the end of the tunnel is in sight and to crash again is heartbreaking. Absolutely heart-breaking.

I feel ya.

As to the knitting stuff, it's perfectly fine to put it all on hold. Both Snez and I know what it's like. Don't even think about that stuff right now. Seriously.

The most important thing is your healing. Everything else is secondary.

When you're able to post here, that's good for you and good for us.

The biggest difference for me between my last crash and any before them was, that when I could get to my computer and read for a bit, ... there were my friends. I can't tell you what a difference that made. It made me just a little bit more whole each time I could come here. And I swear it helped me recover faster.

We're here. That's all we can offer but I know from being on both sides of it, that it's nothing to sneeze at. We're here between the crashes and during the crashes. We'll hear you. We'll care.

Keep telling us how it's going. Oh, and ... elsewhere you apologized for a "rant". I hope I don't need to remind you of our official stand on apologies? Especially for apologies for totally warranted rants?

You haven't been well, so we'll let it go this time.

Rants -- okay.

Apologies -- Not so much.

 

[jackie]

Thanks Sushi! I started reading the thread here on Naltrexone but came back to respond to you (I'll continue reading/researching).

Yes, I did know a bit about the sometimes dramatic results, but as I have a high degree of pain I figured it was not an option for me.

I take Tramadol, and if the pain is too great I take Hydrocodone, although neither is truly effective.

I did read on the thread where some very brave soul stopped her pain meds in order to try it! I don't know if I could at this point!?

I have neuropathic pain, pain from multiple Lipomas encroaching on nerves, Shingles pain, Fibro pain and the worst of all is the Gut pain fron Enterovirus'. I'm just a mess!lol!

I even had to stop acupuncture because it hurt too much. I hope to reach a point where I can get it under control enough to try different modalities...I know I'm missing out on a lot of treatments, especially newer ones, since I've had ME for so many years.

But I will continue to research it.

Hi Jenbooks (I have some Dental Questions I'd like to ask you at some later date!) Ahhh...IVIG! I'd try it in a minute if I could afford it!

One of my dr's used it in conjunction with antivirals with some success....although temporary.

As I understand it, he's stopped doing that (and replaced it with Oxymatrine) UNLESS or UNTIL one relapses after discontinuing those treatments - then he uses a short course of IVIG so that you can start the antivirals/immune modulators again!?

It seems that most people tend to relapse after a period of time with these protocols. NOT the IVIG alone, but the combination of treatments. That is how I understand it..but I could have gotten it wrong!

I've been on disability since my dx years ago and just can't afford IVIG. A few years ago I apparently was quite close to being included in a study whereby a Drug company would donate the IVIG treatments. I was so excited but it didn't pan out - just didn't fit what they were looking for, I guess.

It's crazy, I've had so many expensive tests (many MRI's, TOO MANY ct scans, EMG's, EEG'S, BAERS, TWO lumbar Punctures on and on!) none of which were really helpful and yet my insurance paid the bill.

But I can't get some of the most basic lab tests done...or very little treatment. I'm grateful to HAVE Insurance...but we all have the same challenges/choices that need to be made.

To be honest I feel like I'm getting the most beneficial "treatment" from the constant company of my two little dogs....no pain - just pure pleasure with a couple of doting Pomeranians!

I'm curious, have you used IVIG and what were your experiences with it?

Thanks for the reply, jackie

 

[Jody]

Caledonia,

Thanks for the suggestion.

Koan and KC,

Thanks for the feedback. It feels good to know that it resonates with other people who have gone through it and are maybe going through it now ... again.

 

[Jody]

Hey Jackie,

Tough situation. Have you looked into low dose naltrexone as a very different type of immune modulator? I am taking it with good results as are a few others on this board. There is a thread on it in the general treatment section, though it is spelled wrong (the thread spells it Naltrexene--Jody, any chance you could correct the spelling so the search engine could locate it?)

There is also a lot of info at lowdosenaltrexone.org.

Very best wishes,
Sushi

Sushi,

I'm not sure how to do it.

If you send a private message to Cort, that is your best bet. He knows how to fix it.