Megasporia, Milepost, Markers and trip anxiety

Blog entry posted by CedarHome, Nov 3, 2018.

So I'm now taking 1 1/4 capsules of Megaspore. I have to inch up in 1/4 cap amounts and still it knocks me out the next day.

The other night, after going back up to 1 1/4 after a few days at 1 capsule, I woke up at 3 am with lymph nodes so painful I couldn't lie on my sides. Only under my arms. :sluggish:

5 am, same thing. Slept till 10 am and then it was..... gone. :thumbdown: Super tired rest of day, did nothing.

But wow. Was Megaspore stirring stuff up enough that my immune system could see it?

The Milestone.
21 months after huge crash, I made it to my first (super gentle) yoga class today. It was actually a mini "women's retreat" so there was collage :D (so hungry for any kind of creative expression!) and, 3 dance it all out songs. :redface:

I did fine with the gentle yoga- good to know that what I'm doing at home is helping. Only made it through 2 1/2 of the songs. But it gave me confidence to maybe try a little aerobic movement now and then.

Markers
I thought I would try Learner1's scoring system:
  1. Total hours of sleep in 24 hours _ Varies, usually 10 but can be 12-15
  2. Number/hours of naps per day _ 0-2, most days 0 but when I increase a supplement nap city
  3. Ability to sleep through the night with quality sleep_ Nope. 5 uninterrupted hours is a good night.
  4. Ability to read an article or focus on a TV program or a tedious task at work_ Yes about 50-75% of time
  5. Ability to write a business letter for report or help a child with homework_Yes
  6. Ability to plan and execute a multi step task._ With effort and only 1 at a time.
  7. Ability to stand in a grocery line or talking to someone without passing out. _Yes, this is a big one.
  8. Hours of work per week_ After many months of 0, 2, 5, 10, 15...I'm at about 30. I'm trying to stay at this level and increase exercise/ movement/ healthy cooking rather than increase work if possible.
  9. Hours of treatment per week_ 3-4 (sauna, acupuncture, chiropractor, massage sometimes)
  10. Ability to walk and distance walking, or confined to a wheelchair_ Can walk 2 miles. Huge increase.
  11. Minutes of non-aerobic exercise per week_ Varies widely, say 90
  12. Minutes of aerobic exercise per week_ ha! Nope. Scared of that. Will have to try a little.
  13. Ability to exercise without multiple naps during the session_ Yes, aerobic would mean naps.
  14. Hours of PEM per week. Hard to say, I still have mystery crash days and never know why. They're about 1 day every other week now instead of all the time.
  15. Ability to drive and do errands_ 80%
  16. Ability to sit through a meal_ 80%
  17. Hours of social activity with family_ Every couple weeks maybe 2 hours.
  18. Hours of social activity with others_ Every couple weeks maybe 2 hours. This is a big one- I'm generally too tired to see friends.
  19. Ability to cook, do laundry, vacuum, take out trash, mow lawn, etc. At 25-50% of pre-illness level.
  20. Ability to take a vacation normally, without compromises. Umm, no.
Musings on Travel, Lack of

The saddest thing for me lately is that I'm too fragile to drive across the state to see my parents, who are getting older and too ill themselves to travel here. :grumpy: I had hoped to do it before the weather changed.

Or, I had thought to fly. I might still try to do that. That is also quite tiring. Being outside of my home where everything is set up to remind me what to do is tiring. The thought of packing ALL THOSE SUPPLEMENTS... :alien:

We are trying an anniversary trip next weekend. 2 hours away by car in a familiar setting. 3 nights away. Should be fairly low key and yet I still have to pack a gazillion supplements and plan for naps and scout out places I know I can eat ahead of time.

I'm anxious about flying without having a flu shot, for whatever reason- Dr said avoid flu shot if possible.
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CedarHome

About the Author

possibly recovering from major mystery health crash? some days it seems that way. Other days I'm on Friend The Couch.
  1. CedarHome
    RE: trip update.

    Survived the Trip and then had 3 days sick at home.

    PEM? Or possibly... mast cell activation after eating verrrrrry

    at tasty but ill advised Thai street food style restaurant. Super spicy.

    Followed up by Verrrrrrry tasty but possibly, ya think? ill advised bibimbap with hot sauce.

    I think all that set the mast cells on freak out. Added back a dose of antihistamine and I seem to be okay.

    EXCEPT I also am adding Oregano which is Kicking my Butt. For SIBO treatment #... I can't remember.

    But during trip, PRIOR to inflammation flare, I also managed a new milestone=

    4.5 mile hike including a little elevation. Longest most arduous hike since I became sick.

    It was so amazing to hike in the forest. Felt like being in an oxygen cathedral. To think the whole world was once like that.