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- youre special. You cant 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 dont know how to start the turbines, but so they dont 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 Im 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. - Ive 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 Ive 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 its 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. Ive 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 didnt 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 Im going through, I would have gone nuts a long time ago. It helps when I am honest with these folks, and if Ive 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. Youre 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 its 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 doesnt count. Ive 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 cant sleep and I dont feel like laughing Ill force myself to fake-laugh and after 10 seconds I actually feel the giggles turning to reality. Probably because its 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.

Comments

Great advice, Kelvin,

I love the one about laying down at the airport.

Even when I was well 30 years ago & travelling through the UK & Europe, I would love to have done absurd things in public (too embarrassed at being thought silly).

I DID sit down on the kerb after food shopping at the local market one day (because I was in too much pain to stand waiting for the overdue taxi to pick me up).

Imagine a well dressed, mid fifties lady just sitting down on the kerb amidst crowds of shoppers.

I wondered what went through the shopper's minds.
 
Kelvin, you're going to have to keep this blog going forever (or at least a long long time). I'm addicted to it.:Retro smile:
 
Great post, Kelvin. I've also been way too embarrassed to lie down in public, although I do sit on the edge of the kerb sometimes. You've encouraged me to be bolder! Great tips, generally. Good luck with your Ampligen therapy.
 
I was told I would have to wait for an hour and a half for my disability medical. The room was full, but I found a corner, and using my coat for a pillow, I lay on the floor with a magazine over my face (the fluorecent lights were doing me in). In no time, they had sent some people home, to be recalled another day, and found the missing doctor.

I was out of there in half an hour, but if I had been too proud to lay down, it could have been two hours. And it wasn't just myself that was helped.
 
I do all your tips except number 7 and I'll endeavor to add that one. I probably could do number 5 better, because when I feel really bad, I'm like a wounded animal who just wants to withdraw into the cave to recover without stimulation.

Ambiant music throught earbuds is how I often slept and sometimes still do when there is a lot of noise in my environment. Keith Jarrett is one of favorite musicians.

I have been lying down in airports since I got sick. I couldn't travel if I didn't and I no longer care what anyone thinks of me. I also lay down on the floor of a Social Security office while waiting to be interviewed to see if my disability would be renewed. The interviewer asked me if I were really tired (my disablilty is for being "depressed") and I replied, I'm more than tired, I'm sick. I STILL have CFIDS and no one in my government cares enough to find the cure. She looked like maybe she had heard it before and didn't discount it.

In the past, I also lay down on my doctor's examining table while waiting for him. I said, Sorry to waste your paper covering, but I need to get horizontal. He didn't have a problem with it.

Getting horizontal when I need to is one of my best coping "tricks". Sitting down on steps or curbs is next best. I used to be embarrassed by my disability; no more. I've turned into a grouchy old lady (think of a female, better looking, version of Walter Matthou - Grouchy Old Men). Grumpiness is a lot more appropriate than shame IMO.

Thanks again for sharing your trip.
 
Thanks for the encouraging comments, friends. Didn't realize there were so many others who could so easily "pull up some carpet" and just lie down. Next time I'm in the airport I'll look for you! As many of you mentioned or implied, being "embarrassed" about this is the least of our worries now, no? Thanks for making me feel so good about my "absurd" decisions!
 
Kelvin, whenever I read your blog I envision Hugh Laurie writing or speaking this. I think you are so funny! I love the trumpet story and playing Stevie Wonder. That dry sense of humor.

I have never laid down in an airport, but I might have to try it just to see peoples reaction.

And I agree with Lily! You will have to keep this blog going. It's just too good, even down to the pictures you choose!

Keep it up.
 
I have often sat on the floor at an airport, why not lie down? Many of these I already practice, but I've gotten some good insights on how to refine them. Especially that "little at a time" thing, hard for a former "work manically, then collapse" type.

I'm very happy also to know there are so many ground-sitters and floor-liers out there! I've been doing it for years, but now I have solidarity...
 
Great post!! : )

As to travel, I am currently too sick to do it even if I lay down, but the last time I did fly somewhere it was pretty funny. I was actually in two medical boots for ankle issues, I was wearing a face mask, bc it was the height of flu season, and I also had a portable air purifier with a blue light coming off it hanging around my neck.....and I carried my pillow with me.... Boarded the plane first, sat in the bulkhead, spread out as much as possible, and every time someone started to sit down without actually looking at me, they changed their mind when they did take a peak! I had lots of space, could move as much a needed and rest as needed. It was great! After I stopped feeling embarrassed, it cracked me up, and I made sure on the return flight to be looking at everyone as they were boarding, so they wouldn't even start to sit next to me.

I am not at all antisocial, and actually am often very lonely with this illness, so it was tempting to get someone to sit there just for the company, but I knew I wasn't really up for that. The flight attendant actually felt bad for me, too, and gave me a free drink. (I used to be able to drink with CFS - not anymore).

Overall, I highly recommend doing things that might seem embarrassing. I mean, I don't generally set out to be embarrassed, but the results of getting over that embarrassment can be worthwhile and surprising. ; )
 
This is my first time commenting on your blog, but I've been following your account of your Ampligen experience on this blog with interest and rooting for you. Love your humor and outlook, and your writing style.

And great post - I find everything on your list helpful too (including lying down while out, which I only recently discovered). The last part about turning a fake laugh into a real one before bed really cracked me up - I'll have to try that one myself! :Retro smile:
 

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