Tuesday, March 23, 2010

7 Absurd Things I Do to Make Life Manageable

"I am thankful for laughter, except when milk comes out of my nose." Woody Allen

It was Christmas time and the jazz band on the corner was playing the requisite boring Jingle Bells music. I just completed my 17th treatment yesterday, and things are going well. So much so as I passed the corner,  I was reminded of how bad I felt when I arrived here three months ago. I had just come to the USA in the heart of winter without a coat,  to start my Ampligen treatment,  and I felt sicker than the proverbial dog. I needed something to break me out of my funk, cheer me up, and make me smile. I saddled up to the leader on the trumpet with the donation bucket in front of him, and said, "Can you play something else?" He replied "Well, the city wants us to play holiday music." I flashed him a $20, and said, "How about something by Steveland Morris?" 

He grinned from ear to ear, took my $20, and said, "Why not? A little something just for you, by the great Stevie Wonder!" His 5 piece group then lit up the block with a fast version of "Isn't She Lovely?" for 10 minutes, while I just soaked in the shower of brass therapy.

Someone in the crowd expecting "Winter Wonderland" mumbled, "that's absurd!" I just smiled and said to myself, "Yes, isn't it? I'll take absurd right now, if it helps me feel better." 

Face it- you’re special. You can’t do the same things “normal” people do, and may need to do certain things that others don't, just to survive. But there are ways to manage, even if on the surface they may seem absurd.  Here are some simple yet very effective “tricks” I use to help make the days easier, routines more balanced, and my recovery times shorter.

1. Use a checklist for Daily routines. - Pilots use checklists not because they don’t know how to start the turbines, but so they don’t forget some little detail. Because I know my memory sometimes fails me and I can forget to take important meds, or even forget to eat, I have a checklist of routine things I do each day that I use religiously. This takes the pressure off my mind and also eliminates that cycle of frustration that happens when at the end of the day I’m lying in bed wondering “Did I take my B-12 today?”  or “Did I do my exercises today?” My checklist starts with such basic things as "Turn on music" "Draw hot bath" "Take Vitamins" and "Shave." Yes, I've actually had to be reminded to shave- that's how weird this virus is.

2. Open up the creative side. - I’ve found that when I read short poetry, look at modern art, or rotate photos in frames, my day goes better.  My daughter the psychology major tells me I am exercising other parts of my brain by doing so. My Pastor reminds me that I am not just "body," but "spirit, soul and body." All I know is reading a Psalm, listening to Supertramp, or playing the piano makes me feel more at peace even while the virus is raging.  For example, since starting on Ampligen I have put over 30 photos of friends and loved ones around my apartment and they make me smile.

3. Play “Soundscapes” music.
- The cable TV company I subscribe to has over 100 channels of music, and I’ve found a “new age”  or “ambient music” one called “Soundscapes” that I like- it is just like the stuff they play at spas and when you get a massage. Slow, gentle, almost invisible music plays in the background of my apartment almost all day. Sometimes I fall asleep to it. The AMTA says that the ambient music therapy can positively affect all sorts of cognitive and behavioural changes. 

4. Plan to do half. - My NeuroTherapist gave me this idea. She says it’s better when I think I can do 2 hours of shopping, to actually only do one hour, and then get horizontal. If I think I have energy for 15 minutes of walking in the park, I should do 7 or 8 minutes, and then quit.   I’ve also found through trial and error it is better for my head and my body to do things in short bursts. If I write a letter I might do it in 3 paragraphs, spread throughout the day. To do my income taxes, I am doing just one page a day, for the next 100 days. A good friend of mine while sick with this virus got her law degree one class at a time, over a 7 year period.  Jazz great Keith Jarrett, also an M.E. survivor, sat at the piano in 10 minute bursts, wrote a couple notes, and then went back to bed when he was really sick.  When we push it, we usually set off the cascade of symptoms- and that is not good. So take in small bites.

5. Connect with others. – If I didn’t have my wife and daughter, some close friends to talk to by phone, my online forum friends, Twitter, and some fellow patients who understand what I’m going through, I would have gone nuts a long time ago. It helps when I am honest with these folks, and if I’ve had a bad day to admit it. If you are fortunate enough to have a fellow-patient in your life who can encourage you and say “You are going to make it. You’re doing great!” then you will find they make up for all the lost friends and toxic “friends” that are poison.

6. Get horizontal, often.
- Whether it’s because of our orthostatic intolerance, our immune systems on overdrive,  the toxins in our systems, or any of the other things we battle,  we need to take breaks. My Doctor says that the definition of a “break” is actually getting my legs and head parallel with the floor, or it doesn’t count. I’ve found that 5 minutes horizontal “recharges” my tanks. I do this in shopping malls, in restaurants, whenever I need the break. When I travel I am shameless. I lay down in the airport all the time, on the dirty carpet, waiting for airplanes, boarding times, whatever. It's amazing how contagious it is. Once other passengers see me on the floor, others do it too! No one likes standing around an airport when there aren't enough seats...even "normal" folks.

7. Laugh. - There is something medicinal about the endorphin release when I laugh that always makes me feel better. Many researchers have found that laughter helps the immune system. Since starting on Ampligen I have purposely chosen not to watch Glenn Beck, Keith Olbermann, or really any news show apart from local weather, because it depresses me. Instead I watch The Comedy Channel, and literally laugh my ass off. When I am with a patient friend of mine I make it my goal in life to make her at least guffaw or chortle, because when she laughs I laugh more! Sometimes when I can’t sleep and I don’t feel like laughing I’ll force myself to “fake-laugh” and after 10 seconds I actually feel the giggles turning to reality. Probably because it’s so ludicrous, I actually find myself the funniest guy I know at those moments, and I sleep like a baby. 

Three months ago I arrived in this town to try to get better, and I started my therapy that day with the absurd idea that a little Stevie Wonder music would make me feel better. It was. And it did. And I still keep doing absurd things for that reason.

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