Posts Tagged ‘disability’

You Don't Look Sick23 SEP 14: Today was one of my most noticeable examples of The Spoon Theory as how it pertains to my life. Or at least the life I am still coming to know, living with Fibromyalgia, Depression and Anxiety, among other things.

The Spoon Theory explained on Wikipedia, in a nutshell:

Spoons are an intangible unit of measurement used to track how much energy a person has throughout a given day. Each activity ‘costs’ a certain number of spoons, which might not be recharged until the next day. A person who runs out of spoons loses the ability to do anything other than rest.”

The origin of The Spoon Theory can be found here, in Christine Miserandino’s essay of the same name. It describes her struggle with Lupus and how she explained it to her friend, who did not understand and like many others may have at one time told her: “but you don’t look sick.” I know I have heard that phrase more times than I remember. Fibromyalgia (as I have), Lupus, Rheumatoid Arthritis, and other chronic pain diseases and syndromes have taken to using this neologism of The Spoon Theory to explain the struggles we all face with our respective malady/maladies.

So many different things can and do affect the level of pain and aggravation I have each day. One of the worst culprits is not enough/lack of sleep. I don’t usually get up early anymore, but because I was going to a taping of The Price is Right with Drew Carrey (hoping to get asked to “Come on Down” by George Gray) at 0830, I got up between 0600 and 0630. As the late great Robin Williams said in Good Morning, Vietnam, “what’s the ‘oh’ stand for? Oh my God, it’s early!”

Now, despite having lived in California for just over eleven years, I have never tried to get on The Price is Right – why? I don’t know. I guess it never occurred to me the amount of time involved to get in line to get in another line, to get green screen pix in front of the wheel, to wait in another line, to interview with/impress “The Dude,” Stan, to move to another line, to get to order and eat lunch, while waiting for another line to be randomly scattered throughout the audience and wait for just a wee bit longer to finally get the show on the road. Holy hell. But that was not even all that bad as all the lines had seating areas and we are no longer experiencing 100+ degree weather. It was once things got rolling that there was this need to ride the emotional roller coaster along with each contestant, whom, if you are social you have probably already talked to at least once outside during the five hours you were herded about like cattle. It wasn’t long until my arms and hands were sore and weak with what seemed like endless clapping. Of course, this is in addition to the soreness in my throat from screaming at 100% of my all every five minutes, not to mention having the worst dry-mouth ever – a combination of medication side-effects and the fact that no food or drink is allowed in the studio.

As is my tendency, I just kept going full-bore and tried to relax in the few commercial breaks we had in the show. The studio itself is extraordinary. There are hundreds of lighting fixtures and beams, poles, curtains and lights and squiggly designs that made me think this must have been the set of Laugh-In back in the Smothers Brothers days. The stage and audience space are optically intriguing as they are a fraction of the size they appear on TV. But I digress…

By the end of the taping I was spent. I picked up my green-screen memento picture and a deck of The Price is Right playing cards for my collection. I headed back to my car and just sat there for a while trying to decompress and was already dreading the fact that I had planned to go to another taping just a couple hours later. I already knew that I would need reminding to never plan two tapings in one day again. I already felt like I was borrowing spoons before I even went to pick up my friend for the @midnight taping.

Thankfully much shorter an adventure, the @midnight taping completed whatever I may have had left. Endless clapping to muscle fatigue. I had no idea “fun” could be so exhausting and ultimately – painful.

When I got home, I couldn’t do anything but lay on the couch at 7pm and tried to set an alarm for 8:30 to go to The World Famous Comedy Store. That didn’t happen. 3 hours later still groggy and asleep on the couch. I woke for just a little bit. To Facebook, to Twitter, to play @midnight’s #HashtagWars. By 12:30am I was in bed and was able to watch an episode of Deep Space Nine before passing out. Nine hours later… I may have gotten most of my spoons back.

From Miserandino’s essay:

“Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything.”

At 12:30pm the next day I typed this with heavy eyelids and prepared for my next outing – a taping of The Late Late Show with Craig Ferguson with guests William Shatner Jackie Geurrido and Judd Apatow. Le sigh… And the beat goes on. Dada doom dadoom dada



One day of procrastination turns into two days, three days, a week, a month, six months. Where has the time gone?

My writing is no different than my attempts to get healthy. I haven’t written in six months, as is evident by the sizable gap in my blogs, not to mention the empty journals sitting in a box next to my office table. Granted, there are plenty of reasons why:

FEB – Had to leave my apartment because I could no longer afford living there since I stopped working in November. Scrambled a lot trying to figure out if I would have to resort to living in a shelter (a huge inconvenience with an unruly dog).

MAR – Money from State Disability finally came through from November, helping me out financially with the transition. Spent several weeks hotel hopping with my future roommate and our three dogs. The next several weeks were spent couch surfing.

APR – Finally moved into an affordable place and started piecing things back together in the shambles of my life.

MAY – Quit smoking and starting watching what I ate somehow, despite the continued feelings of anxiety and depression and the the feeling that things were crashing down around me. Started P90X, a workout program that I have had for years and had previously never made it past the first week. Started a Food Elimination Schedule created by my Beachbody Coach, Monica Parodi, as I worked towards eating clean. Started drinking Shakeology, which drastically changed the level of health of the food I put into my body. Became a Beachbody Coach to save money on Shakeology and get a great discount on products.

JUN – Went to the Beachbody Coach Summit in Las Vegas to learn more about the benefits of working out, drinking Shakeology and helping others reach their fitness goals (if that includes you, check out my Instagram for details). Met a lot of great people from my Team, as well as people from all over the U.S. and Canada. Enjoyed Vegas for the first time. Met Tony Horton, creator of P90X, which just made my whole trip worth it.

JUL – Went home to New York for a Class Reunion of the class ahead of me (I had always had more friends in that class than my own); got a good dress rehearsal of my reunion for next year. Learned more about myself in regards to family issues that have been raging for decades; it’s interesting how my brain tells me who I do and do not want to have influencing my life and emotions as I get older.

AUG – Finally, a years long project takes place – an expo put together by 20+ people for kids including vendors, donations, raffles, celebrities; a labor of love that turned out to be more non-profit than we had planned, on so many levels. On top of which three family birthdays and surprise bills of nearly $1000 for electric, thanks to living in 100+ degree high-desert, begin to ramp up my anxiety like there’s no tomorrow.

SIDE NOTE: Financial troubles have almost always exclusively been the one thing that will send me over the edge. Especially when I feel as though there is nothing that I can do to make the situation any better.

I also realize that I have slacked off in regards to my workouts due in part to traveling as well as the fallacy of thinking that I am not getting anywhere and I’m not seeing the progress I would like. In truth I haven’t completed much more than a month and a half of the prescribed workout plan, even though I should have finished my 90 days of P90X on August 9th, had I not missed any days at all.

That being said, I’ve spent the last week trying to ramp up to starting P90X all over again. The idea of 90 more days causes hesitation, thinking that I will be bored, while just thinking about it exhausts me to no end. I need to remember that I’m planning on working out for the rest of my life, what’s the big deal about 90 days? I’ll be done in no time, I’ll be physically healthier than I have ever been, and maybe, just maybe, I’ll be able to go back to work. We’ll see. Unfortunately, I’ve been sleeping so much lately and definitely not eating enough of the right calories to sustain the energy I need to do daily activities, let alone work out. And yet – despite how I frequently feel thanks to my mental health, I have never actually given up on myself; I’m a survivor and a fighter and this too shall pass.