It's (almost) my (illness) birthday!

So, five years ago in February, I got sick and never really got better.
Ever since I have dreaded February.

I wanted SO BADLY to just stumble onto the THING that would flip the switch BACK and make all this go away.

Yep, there is not that thing, not that I haven't tried a zillion of them. Still trying.

This year for the first time I've been noticing a feeling of lightness, tenderness, and ... gratitude . :huh:
Gratitude? For my life being destroyed?!

Ha! Well, I don't think that way anymore.

Now I think,
1. There are no guarantees, and people who think their "life" that they are so attached to is going to continue on in the way its going now are DELUSIONAL, bless their active little butts. (Somebody has to keep society running and these days it isn't me.)
2. Of course our lives are all destroyed, that is what life is.
3. I was living in dreamland anyway, pushing too hard and not paying attention to multiple signals that something was up.
4. My body is trying so hard to find balance and ease, that's what bodies do. Thank goodness!

Someone I know told me that her naturopath told HER that.... Of course our bodies are all out of whack! We are part of this earth and she is stressed mightily. We are not separate from every pressure that is on this planet's food web, carbon cycle, climate. How could we be?

Some folks can keep chugging along for a while and some of us, because of quirks of biochemistry or genetics or life experience/societal insanity or all of the above plus just random whole the hell knows why-ness... get out of kilter more easily.

At the time I thought HA I would not work with that practitioner because it sounds like giving up, but I think of that often now.

:globe::tulip::balanced:

Anyway, the specifics.

- Still kind of stuck at about 20 hours/week of ability to work, but it feels like 40 or 50 to me. But hey, 20 hours of work is a lot!
- Able to do gentle short bits of exercise when I don't have mystery illness (mild headache, body aches, fatigue) which is soooo frequently
- I GOT MY TENNIS SHOES OUT OF THE BASEMENT sometime in the last 6 months... I never thought I would put them on again. For walking, not running, but still. :thumbsup:
- I can still do little interval walks WHEN I can walk, sometimes.
- Yesterday I was able to go out with Mr. and prune the little fruit trees together (after him messing them up for 5 years on his own.) He did the pruning, but I was able to stand up and focus long enough to tell him where :)rofl::rofl:) (I mean, one of us has taken pruning classes and one hasn't.)

- This is a big change since last year. Brain fog has reduced enough that I can knit. That's about all I can do, but what a relief to be able to make something at least! I'm really only good with hats, bigger projects are a bad idea, but hey, it's a creative outlet and people need hats. I used to dance, run, make books, make paper mâché masks, garden, hike, play music... all of that is going into HATS.

-Still (some things never change) treating SIBO. :devil:
What the hell is up with that? Why is it recurring? Dunno. I'm clear on the mold tests and that's supposedly why most people have recurrent SIBO.
- Hey my ND wants me to try red algae for the SIBO because it REDUCES METHANE IN COWS. :yuck::lol::woot:

And I'm going along with it! I'm at that Who The Hell Knows point.
At least I'm taking the human formulation of red algae not the veterinary dose. :_

- I'm still at the "moderate" oxalate diet situation. The ND thinks oxalate is primarily a gut imbalance issue and can improve. The oxalate people don't think it actually gets better. One person I correspond with even tried fecal transplant to restore oxalate bacteria, did tests and everything to check levels, there was a short term improvement but it was not sustained.

I do notice a painful response to anything but a teensy amount of chocolate, not a histamine response but OW IT HURTS TO WALK kind of deal, so... maybe oxalate is a thing for me. Which means chocolate is no longer a thing! I did decide walking was more important.

- Sulfur tolerance is much better! That much can be fixable in certain situations. In my case, ND had me take molybdenum for 6 weeks. I love it when there is a biochem fix.

New adds:
- Castor oil packs as per ND. Do those work? No idea. But the cats LOVE me prone on the bed with a heating pad!! :happy-cat:
They know to come running and pile on :_

- Lymphatic drainage (self-massage). Massage therapist showed me how but I'm sure You Tube knows how also.
- Breathwork when I remember.

For those so inclined... I just found out that Plum Village (community that Thich Nhat Hanh founded) has an APP. It has a wealth of guided meditations including body gratitude type stuff. I used to practice (non-guided) meditation regularly, went to the zen center and everything, but lately (last 5 years) it has seemed so hard to be present with a body that hurts. I find that guided meditations really help.

Back to the birthday. I feel like I should have a small private ritual on the actual date. Somehow mark it. Surviving 5 years is a big deal.

And having virtual community here on PR is a big part of what has made that possible.

We may never meet. We are meeting here. Thank you to everyone who has read this blog and commented. It makes me feel so much less alone. We are here together. Big hug, my friends.

Comments

Congratulations on your Anniversary, and some betterment, despite!

We celebrate because your life was not destroyed!

It got modified. We are getting to show those who sit quietly on boulders, how to actually sit quietly, anywhere, anytime.

By getting comfortable with long time, we can ponder every form of the reality of being a human on earth, reduced to physicality and wondering what unknown is going to come over the hill, next.

We do operate in delusional ways, rather often. By telling ourselves some
different story, maybe the story can unfold in new ways.

Example delusion: we abuse our air, soil, water, land, sky and oceans. oh: add plants and animals and other humans. Then, we indicate we don't deserve This or That. And that we should be healthy? And of course ALWAYS happy.

No, our experiment, Better Living Through Chemistry- darn it, its not unfolding well.

With regards to SIBO, do you know what algae might cure the hydrogen version? (I think mine is the hydrogen version). Nobody seems to be running out of the room. (perhaps the fact that my husband is a bit slowed up currently, he isn't running anywhere, so thats not proof methane is absent.)

Knitting a hat, how commendable. When my daughter produced my grandaughter, I was delusional. I must knit a sweater. And this simple pattern should be fine. yet I"m counting 39 stitches, yarn over. I never reached a conclusion on whether there were ten rows per inch, 15 stitches per row.

Fifty years ago, I could knit perfectly. what the F happened?

I ripped out one of the sleeves six times, dropped stitches, abandoned making sure the gauge was correct, and the result is the most expensive toddler sweater that is too wide and too short.

I decided I don' t knit any longer.

QUESTION: I'm really into castor oil on account of Edgar Caycey. I"m convinced it is our cure, if I could just figure out where to deploy it.

What body part are you applying this castor oil to? How do you think its working?
 
I was thinking about our six month thing...you know- no official diagnosis until after six months.

So ignoring the first series of decades of sick with something Eppstein barr....

I recall colliding with that six month anniversary. Of "The Worsening".

I got much worse ME, triggered by stress and possibly a new Virus. And literally its like a little clock, leads to exactly six months later.

Six months after the wildfire, six months when we finally landed in a new place to reside that was not an RV in somebody's yard.

And I could not lift a towel. I could not listen to a single piece of music.

(so now I"d simply like to sign off that its not AS BAD as it was July 2018 and I am very grateful).
 
Congrats of the new view and mental approach to this anniversary. Though it may or many not help us heal in the long run, mental attitude is huge to just continuing on. :)
I know what you mean on a negative view of an anniversary. I was poisoned in October of 05 and it changed my life forever. For the years I was trying to heal from the acute poisoning, every October my system would crash hard, so I began to subconsciously dread autumn. Now with ME/CFS autumn is the start of really feeling miserable, all the way through mid spring... when I start to feel not quite so miserable ;) It took years to change that view. Now, even though physically I do feel miserable, on that deeper level I have regained that love of autumn.
It is nice to hear you've found things that help, improved in certain areas, and have a better outlook on your life. That sounds like a nice anniversary present to me :gift:
Best,
Wolf
 
QUESTION: I'm really into castor oil on account of Edgar Caycey. I"m convinced it is our cure, if I could just figure out where to deploy it.

What body part are you applying this castor oil to?
After studying Edgar Cayce (As a member of A.R. E, I had access to his readings)
I applied castor oil packs some years ago.

Edgar Cayce recommended applying castor oil to a wool cloth and placing cloth over the liver area.

When I first started having a lot of MS like symptoms along with my CFS, I even went as far a making the "WET CELL BATTERY" that he recommended. Some of my symptoms did lighten up but I was doing other things as well so I don't know what actually contributed to the improvement............maybe all the things I was doing combined?
 
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Edgar Cayce recommended applying castor oil to a wool cloth and placing cloth over the liver area.
I need to dip back into these recommendations, thanks for inspiring me.

Something is always up with my liver, the liver is a key organ, energetically and I even have something going on lymph wise right under my rib cage by my liver.

I"m gonna do some castor oil packs and chat with the area.
 
I've had this illness for between 35-40 years (diagnosed, anyway), and others that are congenital. Can I separate them? Not really; does it matter...again, not really.

I agree that we have to somehow come to terms with being ill. It does take us into places that we're rather not visit and we dwell in rooms that we're rather leave empty. Sooner or later though, having super expectations will destroy us.

I think it's good to knit a hat (Rufous, how about a scarf? So you start over and over again and then probably 3 wks. into it...you'll succeed), I'd be proud to be able to knit a scarf....but I choose reading as my drug of choice instead.

You know, sick people have always been a part of our world. I get a bit frustrated with how you can have all sorts of attention when you're a sick child (and I was definitely one of them) and suddenly it all stops when you're 18 and you're expected to be an adult...as if nothing else happened to you. That's often the time we need help the most, but it all disappears.

My family has suffered every bit as much as I have and I'm most appreciative of their love and understanding. A lot of people don't have that...or just the opposite of support in their lives.

Make peace with the illness...you'll be better for it. If something that helps you comes along, then use it with gratitude. I find a healthy dose of it in my life is necessary. Wishing all of you well. Yours, Lenora.
 

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