An interesting crash trigger

So on fathers day I took my dad for a one hour sailing tour of the harbour.  While we were out he was clearly nervous as it was in an actual sailing boat (a pretty large one).  I thought he'd have the time of his life as one of his main hobbies since he moved here is going to a nearby overlook and watching the ships come and go.  While nervous during the tour, in retrospect I think he did enjoy his gift.  As for me, I absolutely loved it!!!  It felt so cool and adventurous to do something like that rather than the usual laying in bed and/or housebound.  To be out on the water on a beautiful day was such a treat.  I did get a little dizzy from the motion and some mild sensory overload, but less so than in a store with fluorescent lights. We got up close to a "salty" - an ocean going freighter - and we saw pelicans and cormorants etc.

However, the next day I was not only crashed but burnt! I wore sunscreen but didn't think to do my knees and I was wearing shorts.  I had 5 horrible days in bed til I was back to my normal level of crap.

Then this week I had a friend visit, but I was very very careful activity wise not to over-do.  I did sit out on the patio quite a bit in my recliner, and one day as I was resting there I got burnt.  Then yesterday I was so crashed, I really felt as if I was dying (and I still feel horrible today).  My roommate pointed out both crashes weren't the 2 day effect of activity that I can usually count on (if I do too much I crash 36-48 hours later), but rather perhaps as a result of getting too much sun?!! Okay, how can getting too much sun cause an immune reaction?  It makes no sense...but it fit.  So I posted something on my M.E. group and sure enough, many others have had a relapse/crash from sun exposure.  An immune/disease reaction from sun? From enjoying the sun!!!

And to add to the injustice of it all, I've been resting up all week so I could attend a dog event I've been looking forward to for 6 months!!!! But I am absolutely too ill to do anything, and by no means well enough to leave the house.  The event runs three days, I'm hoping they will let me shift my registration from Friday to Saturday or Sunday on the off chance I pull out of the relapse/crash in time.

I was so sick yesterday I was just crying with the overwhelming flu and weakness stuff.  I made the mistake of wasting my energy to go see my Nurse Practitioner (I had a ride).  There is nothing she can do for the M.E which just makes me so so so mad sometimes.  Not at her, but at the fact that WTF!!! How can those of us with this disease be so ill with just no one or nothing that can help in anyway?

She did give me a prescription for a PPI again as I've been throwing up a lot, not tolerating most foods.  It's a combo of GERD and POTS and just M.E. I think.  She also thinks my stomach ulcers are likely back. I also managed to faint in the garden for the first time in 10 months bending over to pick a weed.  She said we could get me a new cardiologist (mine retired) but the one I had tried me on most the drugs for POTS and while nice and not dismissive, he really didn't help me much.

So that's my life at present...pretty horrible, and at the moment I feel as if I'm about to puke which lately has been 12 out of the 14 hours that I'm awake.  It could be worse, I'm not nauseous, just constantly feel like my food will not stay down (and it doesn't a lot of the time).

As for the issue of a better understanding of M.E. in the general public, a friend (non M.E.) posted an article today and I really like most things about it. For one, while they talk about the study's findings they don't say it's the disease cause as in the case of many of these articles, they speculate it could just as well be the result of the disease process.  They also discuss other scientific findings that may be part of the puzzle.  They also don't say in the title "M.E. no longer seen as psychological" as most media related articles seem to feel the need to do despite over 4000 studies showing abnormalities and 25 years of research.  If you need to feel hopeful about recent science, this is a good article to read: http://www.sciencealert.com/researchers-find-chronic-fatigue-syndrome-markers-in-gut-bacteria