Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Thursday, August 2, 2012

The Perfect S--t Storm

I lost my grandfather on Sunday--as in, he passed away.  It wasn't unexpected, as he'd been in bad shape for a while and we knew that he could pass at any time.  Still, as much as I thought I was prepared for it, it's a shock when it happens.  Preparation is one thing, but grieving is another, and I hadn't started the grieving process until he actually passed on.

I'm almost reluctant to dovetail this topic into a discussion of ME for fear of appearing to have my priorities misplaced.  But this blog is, after all, about ME, so I'll set aside my grief for a moment and talk about how it has affected my health.

It's a double-jeopardy situation.  First, there's the emotional stress.  More experienced PWMEs tell me that emotional stress can cause crashes.  This is my first go-around so I'll have to take their word for it.  It certainly hasn't helped.

Then there's the unplanned, last minute trip to the funeral.  Missing this funeral is simply not an option unless I, myself, am dead.

My grandfather happened to live on Santa Catalina Island, which lies about 26 miles off the California coast.  So that's where the funeral is.  This means we're making last minute ferry reservations and last minute hotel reservations. It also means travelling with an infant and probably 100 pounds of luggage, mostly baby equipment.  That trip begins tomorrow.  Sounds like a crash in the making, right?  As the late Billy Mays would say, "but wait, there's more!"

Yesterday I woke with a sore throat.  By late afternoon, it was clear that a pretty serious crash was building.  The body aches and heavy fatigue were setting in and my body temperature had dropped to 96.7, as happens sometimes when I crash.  By this morning, my nose was stuffed and it was clear that this crash would be among my worst.  I'm certain that this is a "sick on top of sick" situation, meaning I caught a virus that precipitated the crash.  

I'm in survival mode right now.  I just need to get through this weekend somehow.

Making matters worse is that we're supposed to travel across country next weekend for my cousin's wedding in New York.  We'll see how this crash progresses, but I may have to back out of that trip.  I just need to do whatever it takes to get back on my feet, so long as "whatever it takes" doesn't mean missing this funeral.


  1. My sympathy Patrick, so true that even if you know it is coming, the shock of it actually happening (his passing)hits deep. Shows how us humans have such powerful emotions inside. Yes, do what u can to get through the funeral. I have found out that I can tolerate more than I ever thought I could when I was healthy. You can do it. The wedding across country though, you may have to make a game time decision there. A taxing trip by itself, but to come on the back end of a funeral....know what you may need to recover my friend. Hits on a point I made in an earlier attend important events if possible just to know CFS isn't taking everything away from us. Keep us posted!

    1. Bret, thanks once again for a thoughtful comment and for your sympathies. I just got back from Catalina Island this evening and am surprisingly doing much better than I anticipated. Thursday was absolutely the pits -- it felt like I was plunging into one of the worst crashes ever, but I bounced back pretty strong the next day. It makes me think that this Equilibrant is really working because Dr. C said that one of the signs of it working would be that my crashes would be much shorter. I couldn't believe how quickly I bounced back.

      You're right about the wedding being a game time decision. Although, in this case, "game time" will probably mean at least 48 hours in advance so I can cancel the hotel without penalty.

      Anyway, hope you're doing well. Any trends, positive or negative with you lately?

    2. I think the immunstim and NT factor have helped shorten my crashes as well. I have been taking them together for 4 months now, and any crash I have had is really only 24 hours now. Before taking these it would have been 3-4 days, so this whole immune system thing is such a part of this. I may try to Equilibrant as well, since you have had success it seems. I am also working 36-38 hours/week now and tolerating that pretty good. Did you ever make a decision regarding your work schedule?

    3. That's great to hear you're having success with Immunstim and NT Factor. I hope it keeps up.

      On my work schedule, I negotiated out a deal with my boss that I will just take time off on an add needed basis and will report at the end of each billing cycle how much I've taken off. They'll deduct that time pro rata from my salary. If this doesn't work out then I might go to something more consistent and structured like the plan you're on where you take two 1/2 days off per week.