Feeling Like Myself

For me, when I'm really sick, all I want is to feel like myself again.

But in 2002, for the second time I found myself at the bottom of the downhill slide to severe illness, sitting there with congestive heart failure, kidney failure, having had a stroke, and unable to get up or down one stair - well, it was going to be a while before I could physically do all the things that the healthy "me" could do. However, because my illness primarily affects my body, and not my mind, I still had my mind to have fun with.

What makes me feel like "me?" For me, most of all, it's being creative. And for me, being creative means writing, singing, making music. So at my lowest point, when I was so sick that it truly frightened all my friends, I found "me" again as I started writing songs about my medical problems. Seems odd that writing about my problems would distract me from them, but it did.

Now keep in mind, I could not play the guitar at that time. My left hand did not work because of the stroke. So, I had to find a way around that limitation. What I ended up doing was taking other people's songs and re-writing the lyrics (parodies) until I could get my hand back. Meanwhile, I got a ukulele, which requires very little hand strength, and I played that as my own sort of self-created physical/ occupational therapy.

What do you like to do that's creative? Poetry? Visual art? Knitting? Blogging? Journaling? Singing? Is there something you love to do that you can still do in some form? How do you express yourself?

Here is one of my creations that, if you also have a chronic illness, I'm sure you can relate to. Sittin' in the Waiting Room:

Fibro What? The other F word

During and between the 3 lupus flares I’ve had, one constant has been my companion- fibromyalgia. After the big scares have all passed- my kidneys are no longer failing, I’ve recovered from the stroke, the neuropathy has subsided, I can eat, the fever is gone, etc.- the pain is still there. But I find that the fibro pain doesn’t seem to register with my doctors, because it’s not measurable on a blood test or an X-ray. So over these 16 years of dealing with both lupus and fibro, I’ve been pretty much on my own in dealing with the fibro. I’m sure I’m not alone in my feeling alone.

I have tried so many things to remedy the fatigue, the tightness and pain in my upper back magnify when I lie down and keep me awake at night, the tenderness in my arms, and general irritability.

I tried chiropractic, acupunture, diet change, chi gong, stretching, ignoring and denying, popping lots of advil, massage, capsacum patches, icy hot, heating pad, gentle exercise, not-so-gentle exercise, miscellaneous detoxification methods, stress reduction, meditation, journalling, and staying educated. For me, I’d say the least effective of these techniques has been ignoring and denying, though for some reason I hung onto that one the longest. The most effective? Acupuncture, chi gong, detox (taking greens, using foot detox pads, milk thistle, filtered water, eating lots of fruits and veggies), stress management (such as writing a list of things I’m grateful for on a regular basis, setting realistic goals, and disengaging from people who aggravate me; I also take rescue remedy, a flower essence)), getting enough rest, diet change (getting rid of junk food and diet soda), and having fun. Laughing and smiling releases endorphins, which are our body’s natural pain killers.

Which brings me to one of my favorite therapies- songwriting. In 2002, during the worst of my health problems, I started writing ridiculous songs about my situation. It all started when I was doing the 24-hour urine collection test, where you have to pee in a jug for 24 hours then bring your big jug of pee in to the doctor the next morning. At the time, I was trying to work my way up to being able to play the guitar again (I had had a stroke), and was playing the ukelele. The first song in the uke book was the old folk song “little brown jug.” Back and forth between the frequent bathroom trips (I was on diuretics) and the ukelele, well of course my first parody was called “Little brown jug, about peeing in a jug.”

After this little breakthrough, I spent hours writing every day and brought my song idea notebook to every doctor appointment. Whenever I was left sitting in the waiting room for 2 hours or longer, I’d just sit there and work on my songs. Now instead of it being an indignity, it was an opportunity. And now, not only was I able to laugh about my situation, using humor helped me gain perspective and take back some control. If someone was especially rude to me, but I was in no position to fight back because they were the only doctor in town who took my medical insurance, then I’d wait ‘til I got home and write a song about them (and not usually a very nice one- but in my songwriting and journaling life, I can say anything I want).
[hear the songs: http://www.thesingingpatient.com]

While we can’t control our situation, or the actions of others, or even our bodily functions at times, the one thing we have control over is our response to any given situation. And in the end, that’s the most empowering thing of all. It is our choice whether this “thing” we’ve been given is a horrible burden, or even a gift that helps us to slow down and appreciate things around us that we never noticed when we were moving faster.