Posts Tagged ‘headaches’

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

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As anyone with Anxiety, Depression, or frankly, active brain waves knows, it’s good to have someone you can trust that you can talk to about anything. Among those I consider in my life – my psychiatrist, a man I trust beyond words who, other than diagnostically speaking, doesn’t judge me. I can be completely honest without fear of being alienated due to my unfiltered verbal regurgitation.

I value his sessions so much that even though I’ve moved to Los Angeles, I still go down to the San Diego VA (Veterans’ Affairs) just to see him. I had an appointment just the other day. I had almost not gone due to how piss-poor I’ve been feeling these last few weeks and seriously considered a phone call to him instead. Thankfully as the appointment drew near I’d been feeling better and made the trek. I spent two hours and forty minutes driving and I just made it on time. We had one of the most productive sessions to date and I even told my doctor about starting a blog. He is very supportive of my efforts.

My last trip to San Diego I mentioned to people too late and no one could hang out; this trip I thought ahead and had plans to see one of my friends and his family and then dinner with a few old teammate’s of mine (I used to play Women’s Pro Football – but that’s a different story). I wound up not having much time before getting to dinner and my friend had to get his exercise in before the evening was out so we went for a walk with one of his sons and caught up on the last few months. Low and behold, forty-five minutes and 1.8 miles later it was time to go. My ankles had been hurting since about half way, my legs were relatively on fire with the onset of circulation in them for once and I hadn’t eaten anything all day. Not the best way to take care of a chronic pain/headache/mental condition such as I have, but I like to live dangerously.

Off to the sports bar to see two of my dear friends and finally get something in my tummy; I ordered a huge greasy bacon burger (no tomatoes, no onions, medium rare as usual) with a side of tater-tots. Tater-tots always remind me of high school lunch, cracked plastic green trays, sporks and pints of chocolate milk (sometimes 2%, depends). Maybe it’s just me.

It was a great time and it’s moments like these that remind me that even in my darkest times, solitary confinement is not the best idea. It’s always hard when you’re in the thick of it to remember the good things and hold onto them.

By the time we wrapped up it was about 9pm and I was dreading the two hour plus ride home to Los Angeles. I decided since I was in the area and it was only about ten minutes out of the way, I’d hit up my old stomping grounds at The La Jolla Comedy Store. I got to see most of my friends there and had some great laughs. While I was there I realized I was starting to have a Fibromyalgia flare-up. This is when, instead of this or that hurting and the pain going from here to there throughout the day, it’s in multiple areas at once and it just won’t go away. The longer the pain goes on the more distracted and irritable I become. My arms were aching something terrible and the pain started to make my whole torso feel like I’d been hit by a train. I tried to stave off the pain with light-hearted conversation with my friends and continued to fidget over the next hour or so. As they were closing I decided to hit the road.

Since it was only about 10:30 I figured that by the time I made it up to L.A. that The World Famous Comedy Store on Sunset would still be open. It would be fun to hit up my new favorite spot as well as the old in the same night despite how I was feeling; it was relatively on the way back home, so why not? The drive back was shorter, just over two hours and I pulled up to the Store at around 12:30am. My hips were killing me from all the time in the car but I was happy to be there and enjoying more laughs. A few hours there and I was home by 3am.

Boy, did I pay for the prior day’s shenanigans. I couldn’t get out of bed until at least 1:30 in the afternoon and even then, I was a zombie. If it wasn’t for my too-smart-for-her-own-good dog, who has the wherewithal to let me know when she has to go out, I may not have gotten out of bed that day at all. I’m quite sure I only had some instant oatmeal and stared at the TV for an hour before deciding to go back to bed. I slept on and off for several more hours and finally had some strength by 6:30-7:00pm that night.

This is part of my many ongoing problems. I throw my circadian cycle off by having fun into the wee hours, or by being in pain or having racing thoughts and being unable to sleep so I toss and turn for hours. I’d rather do it by having fun, but the results are generally the same. Bedtime gets later and later. Wake time gets later and later. Afternoon naps come into play and nutrition, amongst other things, goes to the wayside.

Although easier said than done, I need to take better care of myself, that’s really all there is to it. I need to force myself into a routine and even if I maintain late nights I have to get up by a certain time and work – work hard – at taking care of myself. It’s not that I can’t try to live a full and fun-filled life, it’s that I have to work on making it healthier and more manageable. I need consistency in my life. Moreover, it’s a matter of having indifference for myself and daily – struggling against it.

splatter-grunge-wordpress-logoI am a disabled veteran. I’ve gotten used to saying that by now, despite the stigmata I feel in my heart each time it passes my lips or even my thoughts.

Recently, I had a pretty difficult time with my health, all of my service-connected disabilities came to a head at once and I was overloaded with Fibromyalgia pain, daily Tension (possibly Migraine) headaches and crippling Anxiety and Depression. I had to stop going to work and got a doctor’s note to be out for a few weeks. For the first time I’m putting in for State Disability due to my conditions and for the second time I feel my conditions have hindered my work performance and my day-to-day, this time to the point of not being able to cope – with anything.

In between the days that I couldn’t leave the house, besides to walk my companion dog, I ventured out a few times. In the thick of it, I was so anxiety ridden that driving on the freeway was overwhelming for me and I wondered what I would do if that feeling got worse or didn’t go away.

One of the best destinations I chose when I was in a sullen mood was the World Famous Comedy Store. I have several comedian friends and my whole life I have considered comedy the greatest escape from my sorrows; I love stand-up more than any other form of comedy and really get to let my hair down when I go to shows. It was a conversation I had at the Comedy Store with a friend that spurred my interest with blogging. Being a writer and an English Major, you’d have thought I’d have jumped on the blog-train years ago, but something always stopped me.

My friend and I got into a pretty in-depth conversation about my Fibromyalgia, Anxiety and Depression and he emphasized the need for me to get support; he suggested blogging. The seed was planted; in the last few weeks the idea has turned into more of a mission than just an outlet to express myself.

I’d like to not only express myself, but offer up my experiences to others. I, like many other people with disabilities, somehow always still feel alone, even though common sense dictates that we are not alone. I would like to give my support and in exchange gain the support of others that I know are out there, but that I do not know… yet.