The M.E. yoyo of health

After a horrible crash, I bounced back to 'pretty decent'.  Which is to say, decent for me.  I'm not even close to functioning at 50% of the average healthy person my age, I'd say maybe 30% instead of the usual 20%?

I'm still mostly home bound, but I've been doing one or two outings a week of about an hour without an immune flare/system crash (not to stores, stores are just a recipe for a major crash).  Also, I've upped my PhD work (still from bed) to over 2 hours a day some days.

And I'll take the lessened feeling of constant ickiness, heaviness, any day.

I'm supposed to travel twice in the next 4 months which unfortunately sometimes leads to relapses for me (a crash is an immune/weakness/malaise flare to activity usually hitting 36 to 48 hrs after said activity.  A relapse is a worsening of the overall condition, e.g. a crash that continues for a month or more.  I had a relapse in the fall after travelling 2 times in August).  There is a fairly good chance I will cancel the 2nd trip, depending on the consequences of the 1st (to see my parents, includes a 5 hr travel day, but otherwise pretty low key).

I'm off the POTS drugs right now.  I have some beta blockers to try, and I'm thinking of going back on the florinef as it seemed to help with the dizzy spells.  Problem was, at the dose where it was helpful, I got pulsatile tinnitus from the increased blood flow, which was too annoying to live with.

Despite doing pretty decently, I'm very exhausted right now and seem to be crashing.  It is such an unpredictable yo yo. Sorry I don't have much interesting to write a present.  I hope you all are doing as well as possible.