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

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

Tuesday, August 7, 2012

Empire State of Mind

I survived the trip to Catalina Island for my grandfather's funeral.  In fact, my recovery from last Thursday's crash, before the trip, was unprecedented in its speed.  I'd never before risen 25% on my health rating scale from one day to the next, but it happened just in time to get me through that funeral and the rest of the two-day trip to Catalina.  

I've been told by other PWMEs that sometimes "adrenaline kicks in" to get one through an outing like this.  Frankly, I'd been skeptical of these claims because I couldn't understand what adrenaline has to do with viruses, methylation, and other issues associated with ME/CFS.  But I'm a little more open to that possibility now, especially since I immediately crashed back down after the trip.

As I mentioned in last Thursday's post, the Catalina trip was only one of two out-of-town family obligations I was scheduled to attend on back-to-back weekends.  The other is a wedding in New York, scheduled for this weekend.

Since returning home from Catalina and finding myself in a crash once again, I carefully considered whether to cancel the New York trip.  But in the end, I've decided to power through it as best I can.  This may seem like a reckless decision, but I think it's defensible.

I simply need to give this trip a try and see what happens.  As of now, I have no reference point for cross-country air travel.  Since becoming sick, I've only traveled on an airplane twice, and both were one-hour hops to San Francisco.  One of those trips caused a crash and the other didn't.  So I have no idea what will happen after two 5+ hour flights in four days.

If it causes a major crash, at least I'll have something to point to in the future when I need to make tough decisions.  At least my future decisions will be based on more than rank speculation.  Besides, if I skipped this trip without ever having tried it, I'd always be left wondering if I could have handled it.  So this will be an important litmus test.  I'm prepared to accept the consequences if it turns into a bad crash.

To reduce my odds of a crash, I plan to wear personal nasal filters like the ones linked here, which were recommended to me by a poster on HealKick.  The idea is to protect my weakened immune system from the germ-y airplane cabin air.  Except, my vanity won't allow me to walk around with the little bridge that connects the two filters hanging off the bottom of my nose.  So I've cut the bridge off with scissors, making the filters completely invisible once inserted.  Even so, the filters still contort the shape of my nose to the point where I don't look like myself, but at least I won't have people staring at this funny thing hanging off the bottom of my nose.

I have no idea if these filters will be effective, or if they're just a silly gimmick, but I'm willing to take a chance.

I leave on Thursday and return Sunday.  I'll try to update from New York if I can.  Wish me luck!


  1. Glad you were able to make the funeral. The adrenaline actually makes a lot of sense because our messed up endocrine systems have just as much trouble controlling adrenaline as all the other hormones - usually, we can start it pumping but have trouble turning it off when the need is past (hence, the post-crash).

    Good luck on the trip to NY - I know how important family events can be. As for flying, OI is one of your main concerns because of the change in air pressure - so wear knee-high compression socks (available in any drugstore) and drink HUGE amounts of fluids and salt. But a few V-8's and/or Gatorades in the airport before you board, ask for tomato juice or Bloody Mary mix (without the vodka - lol) on board and keep drinking as much water as you can. Then you'll have to get up and use the bathroom a lot, and that will help, too :) (keeps the blood circulating instead of pooling in the lower extremities.

    Good luck - I hope you are able to enjoy the wedding!!


    Live with CFS

    1. Thanks Sue. I did enjoy the wedding. I left a fuller response on your blog, figuring that you might not check back here...

  2. I used to work in a biolab. While the nasal plugs might stop the larger stuff: mold, pet dander and pollens. I would be really surprised if it stopped bacteria and seriously doubt its effectiveness for viruses. They are just too dang small to be captured with a course filter. Bacteria are on the scale of 1um and require special micropore filters to get caught. Viruses are even smaller by three orders of magnitude, tens to hundred of nanometers. This is why they are so hard to contain. You are better off carrying lots of hand sanitizer and washing down the arms and traytable in your immediate area and washing your hands often particularly before touching your face or handling food.

    Good luck with your trip. I'm crossing my fingers and toes for you.

    1. Thanks Baffled. I ended up forgetting them anyway, as I mentioned at the bottom of my next post. It sounds like they would have been useless.

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