Posts Tagged ‘spoonie’

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

I NEED A BREAK

Who’da thunk 21 accumulative days of 2 trips in one month would be such an exhausting vacation? I always feel like a need a vacation from my vacation. Is that everyone? Or do I just overdo everything I set before myself.

Texas was fun but short and also hectic. It’s so strange to have the perfect storm of anxiety, overwhelming socialization, not enough time and too many activities to cram into 5 days. Great seeing my friend and her husband that I haven’t seen since their wedding 2 years ago. And being introduced to the music of the live band they had, The Zydeco Dots, was awesome. I felt Creole down to my soul. [Note to self: Must go back to NOLA someday] I even got to play the accordion, which I didn’t know I could figure out so quickly.

One of the greatest things that happened though? I slept. I slept for hours on a floaty in my friends’ gorgeous pool, in the middle of the night with the stars overhead and nature all around me. I was the only one outside and it was glorious. Seems such a simple thing, that I’m surprised at how calming and unique the experience was.

I was back one day for two doctors’ appointments before it was off to LAX once again…

I knew there was a reason why I only planned to be home in New York for 6 days. It was my 20th high School Reunion – the only reason I went back in the first place and it turned into a two week whirlwind adventure. Sadly, not nearly enough time was spent with old friends. Considering how much time I spent in New York and travelling, it almost seems all for naught over a four hour party where half the people I couldn’t place to save me life. But I’m getting ahead of myself. Let’s start at the beginning and work our way winding to and fro.

As the door was closing on my plane from Los Angeles, before we’ve even gotten the announcement to turn off all electronic devices, I received a text from Southwest Airlines informing me that the next leg of my flight from Atlanta to LaGuardia has been cancelled. I asked the flight attendant what that meant since I have never had that happen before and she asked me if I wanted to get off the plane. I declined as she had no helpful information other than going to the kiosk at C16 when we arrived in Atlanta and ask what was up with the cancellation. I slept for shit on the plane and having stayed up all night out of trip anxiety which is all too common for me I was miserable and in pain from my Fibromyalgia and god only knows what other maladies lurking around the dark corners of my mind. When I got to Atlanta, “C16” informed me of a huge storm in NYC and that not just mine, but ALL flights into LaGuardia had been cancelled and everyone and their brother was getting replacement flights. There was no way for me to get even close to the city within the next 24 hours and I stumbled around for a couple hours trying to figure out what to do and where I could go and how I would get to NY once I got there. I thought about Boston where another classmate going to the Reunion lived but unfortunately she had already gotten to New York to be with her family. I then thought about going to Louisville, KY to visit an old Navy friend of mine, but she had to work and was unable to get out of it with such short notice. My last thought was Baltimore. I knew another high school buddy who either lived in Baltimore of Washington DC (couldn’t remember at the time) might be able to pick me up and drop me back off at the airport the next day. I had already talked to her a few weeks prior about going to the Reunion and she said she probably wouldn’t go, as her family had planned a trip to Myrtle Beach at the same time frame.

When I reached her she said that she would of course pick me up but why not just head up with her two mornings later as she was driving up for the Reunion. I was thrilled that she was going to be able to make it and thought what a perfect opportunity to see her family I hadn’t seen in years. She had to work the next day so I would have the whole day to myself and I had an “A-ha” moment. What if I drove her to work and then borrowed her car to drive to Richmond, VA (which wasn’t all that far away) to see family that I hadn’t seen since late fall of 2000 when I got out of the Navy. As luck would have it that idea had even better merit when she told me she was working in Fredericksburg, VA almost half way to Richmond and of course I could borrow her car. I was elated.

I got to see my cousins and their children, my aunt and uncle, and my grandfather on my father’s side. It was wonderful! I even sat down and went over some Ancestry.com entries with them, as that is a huge hobby of mine.

The next day my friend and I drove up to Upstate New York just in time for the reunion and my nerves were shot. I was so scared/nervous/paranoid about my swiss-cheesery brain not remembering people I knew I should. Within a couple hours my anxiety was ebbing and I felt like I was finally getting into the groove of the evening just as it was winding down. But of course. I know that the feelings I felt that night will have to be dissected with my therapist later this week. Insecurities and all… Maybe I need to up my meds. Just sayin’. At least it wasn’t nearly as bad as I was fearing; Grosse Point Blank and Romy & Michelle weren’t the best study guides. Facebook on the other hand, helped greatly. Interacting with old friends and looking at their photos, getting to re-know them and learn of their families is one of the only reasons that I felt comfortable around them at all.

Two days later I was at a huge family Pig Roast and saw nearly my entire living family plus some on my step-father’s side. Some of them I had not seen in 15-20 years. It reminded me of younger days when we would gather at one of their houses for Thanksgiving or when we would sit around a large room and do our white elephant present game at Christmas. It’s nostalgic memories such as this that I need help controlling. I feel as though I live in the past. Not only that I live there, but that I dwell on the feelings I had there and then and I create this sense of longing and yearning for days that will never be again.

I got to see more friends and family over the next few days and it was overwhelmingly wonderful and oh so close to being too much of a good thing. As I write this in the quiet of my apartment, I realize other than going out for small necessities, I have basically hermited myself away and truly enjoy being a home-body and continuing my watching schedule of The Twilight Zone and House, M.D.

I have started drawing again, which is great. And writing – evidently. I need to also work on some stand-up and get back into doing mics. Much like not working out I notice the longer I go without doing it, the less likely I am to keep doing it.

Some of this might seem a bit rambling, not to mention a bit long, but nobody said a blog about Depression, Anxiety, Fibromyalgia, Tension headaches and the like would always be full of unicorns and glitter. Although I do like Unicorns. And glitter.

…oh look! A butterfly!

Club House and Grand Stand, Saratoga Race Track Saratoga SpringsIt’s astonishing how easily I can forget to take time to write. Whether it’s for my blog, for my sanity or even just an email. I also forget how great it feels to put a string of words together to express myself. I can only equate it to how you never workout because you simply forget just how good it actually feels to do so. I participated in NaNoWriMo in 2013 for the first time and wrote a staggering 26,000 words – just over 50% of the goal. It felt great, to a point, and I really need to complete that particular project… but I digress. Having been away so long from blogging, I thought I’d recapped the plan for last year and take stock in what my swiss-cheesery of a memory deems as highlights.

LAST NEW YEAR: “So here we are, January 2013, and I have decided that rather than make resolutions, I will state a few things that I don’t want to do this year – some I truly hope not to happen, others I think that if I fail at them, it will be a good thing. Here goes: I’m not looking for a relationship, I don’t want to torture myself trying to quit smoking, I don’t want to keep feeling useless and afraid of myself, I don’t want to get fatter, I don’t want to be destitute and wonder when my next meal will be or where I will live. I won’t go off my meds because I forget or think I am better without, I will try not to sweat the small stuff, and I’ll try not to forget about consequences and what leads to them. I don’t want to miss out on family gatherings, I will not rely on others for my well-being, I won’t overwhelm myself with tasks and impossible goals and I won’t forget that I am only human.” All in all, not too shabby since I am still not in a relationship, I quit smoking in May and I lost 30 pounds. Granted New Year 2014 seemed to be a total reversal of most of these as I am smoking again and have gained back all the weight I lost plus some. I am however, still trying to better myself – probably more so now than ever.

 

SEP 2013: My 37th birthday came around and I had lost 30 pounds since May and felt so good that I decided to celebrate by having my 27th birthday. I instagrammed pix of my pink and purple “27” candles on the vegan chocolate cake I made for myself (disgusting by the way). Once it was on Instagram and Facebook, it became true, since you can’t put things on the internet if they aren’t true.

OCT 2013: I dressed as Supergirl (Superman’s cousin) for Halloween and felt awesome. The subsequent candy feast however, lead to a downward spiral I wasn’t expecting. Flash forward to Thanksgiving and the Holiday overeating season.

NOV 2013: Time was running out on my State Disability; you can only get Disability in California for one year. I was unsure what would happen to me financially when that took place. It was during this time that I had finally decided that I had to give up my therapy dog (for mounting reasons) and I delivered her to her new home the Saturday before Thanksgiving. Depression over “losing” Kona may have aided in my nutritional demise.

DEC 2013: As luck would have it, after waiting 6 years for the *correct* rating percentage of disability from the VA, I was finally granted 100% and I could not believe how great the timing was.

JAN 2014: I started going to Los Angeles more and more, as I made plans to move back there when our lease in Helendale was over. I met a comedian friend of a friend and he informed me he was subletting his roommate’s room while he was on tour. I jumped at the chance. I started doing stand-up at open mics  and was thrilled by the rush.

FEB 2014: I moved into a furnished place and started “kind of” looking for places to call my own in West Hollywood. I was going to The Comedy Store every night and loving it. I started to seriously consider that I was on a path to alcoholism as well as becoming a comic.

MAR 2014: I had very little time, as the Helendale lease was almost up, to pack and get all my things into storage, since I couldn’t bring them to the apartment I was staying at.

APR 2014: Realized how fast time was flying and started to buckle down on finding a place.

MAY 2014: I had until the end of the month to find a place and I was getting worried as the rejection calls were coming in based on my credit. I was accepted at two places: one a shit hole that was close to West Hollywood and one several blocks east more in Hollywood proper/Los Angeles. I took the farther one as it seemed a much nicer place and somewhere I might be able to call home. With the stress of moving I stopped doing open mics for a while.

JUN 2014: June flew by in a tizzy of cardboard boxes and first-time adult purchases of major appliances… for the kitchen! What were you thinking?! It feels so strange having my very own refrigerator.

JUL 2014: So here we are and I’m currently sitting on a plane to Houston to celebrate my friend’s husband’s 50th birthday. It stirs an odd emotion inside me as I ponder the possibilities of that very same celebration in my life, which seems not long off (but kind of is). As soon as I get back from Texas I’m on a flight to New York to go to my hometown of Saratoga Springs for my 20th High School Reunion. Why didn’t I think to invite John Cusack as my date since I am still single and have no kids? At the very least, I’ll be sure to bring a pen.

Option Paralysis 2 I am swimming in to-do lists and quite sure I’m on the verge of drowning due to option paralysis. I had always thought my best friend coined that phrase, but alas I was able to find it in Urban Dictionary.  It has always been such a great way to describe how I often feel; when faced with so many choices/options I get overwhelmed and in not knowing where to start – I just don’t.

Apparently I am not alone, as many people feel overwhelmed and inundated with “options” these days. I’m sure the ebb and flow of technology and all that can be achieved at a moment’s notice on the interwebs has aided in this phenomenon. Robert M Brecht, Ph.D. writes that “psychological research over the last forty or so years has established the correlation between providing choice and increases in intrinsic motivation, perceived control, task performance and satisfaction with life. […] There comes a point when the choices available to us become counterproductive.” More of his conclusions can be found in his blog post “Consumer Marketing: We All Want Choices… or Do We?” Another blogger, M. Farbman, had this trouble in youth when going to Baskin-Robbins – 31 Flavors – the perfect analogy in the blog “Option Paralysis.” Although it must be harder now, as my last count put them somewhere over 57 flavors.

My most pressing issue: I’ve recently been served – no, not by a crowd of dancing teenagers – rather, with an eviction notice (again?!?! That’s another story). This is due to my recent working cessation while dealing with severe anxiety and depression, sprinkled with this awesome nervous system disorder of Fibromyalgia. I have been trying to figure out what I’m going to do with the upcoming homeless horizon that I am staring at like a sun, burning holes into my retinas. I had hoped that I could get assistance from New Directions, an amazing organization whose mission “is to empower veterans and facilitate their successful return to families and society.” They helped me get into the apartment I am in now when I had accepted a local job; now not working, I am in more need than ever. Unfortunately, due to funding constraints they are no longer able to assist me.

I am seeking help from several other organizations, but I have a feeling I will still need to leave the apartment I am in for different accommodations. I am finding that a room, or even a shelter is going to be difficult as I have my companion dog who has been with me for three years and is not able to be with me at most of the options I have; I cannot give her up as she is the only family I have locally and she relies on me as much as I do on her. Perhaps I will be lucky enough to find accomodations that are better for her, with a yard she can run in and not be so confined.

Logic surfaces from time to time, through the Fibro Fog and Anxiety (a steel wool-like cloud that ceases most logic, clarity and cognitive thought), and I realize whatever my next place of residence is, I will have to pack up what remains from my last move and put it in storage. It will be much easier to go from place to place in search of the right one with just my dog, my car, a duffle of clothes, and an air mattress. Easier said than done, however, as money, a truck and movers are required to facilitate this… oh – and a storage unit. I look around my apartment and shudder to think about packing …again. It’s so time consuming and energy sapping, but it has to happen. There’s laundry to do, dishes to wash, clothes to weed through to lighten the load followed by the subsequent donation to Good Will. When I get overwhelmed I sit on the couch and watch TV; God help me if there’s a marathon on, whether it be Law and Order, The Matrix, the Alien Quadrilogy, Family Feud… enough is enough. BACK TO WORK!!! My body hurts, my mind hurts, my heart is uncertain and the World feels like it’s closing in around me – but I must do SOMETHING.

I’ve never given myself a solid routine to maintain my own life – even a simple routine for when I wake-up or go to bed. Those little things seem so easy …and yet go undone. My mind freezes and my body follows suit until some day or hour or minute finally comes when I know that there is no other way but to act. It’s that last minute action that has always saved me, but it would be so much healthier, I am sure, if I could just learn to get my shit together on a regular basis. My success at last minute projects has done nothing but give me negative reinforcement of my bad habits. I hope and hope that I can start giving myself structure but something always gets in the way, the flow of my day-to-day always changes, I think I get ahead and an unexpected expense happens, things are swell and then I have a nervous breakdown. For the love of Pete – it’s always something – my life in retrospect seems so chaotic. Is it because I am better suited to a structured life, a life with fewer options, less choices? The military was perfect for me – but that, of course, is no more I am sad to say and I must live with that – or not, I suppose.

I know I’m not the only one going through these experiences, but more often than not – I feel that I am.

HYE 2013According to Wikipedia, a veritable wealth of reliability, “88% of those who set New Year resolutions fail.” I stopped making Resolutions a long time ago, not because it’s a bad idea to challenge yourself, but because I always seem to fail at them. This year, I’m trying something a little different – my solution to the Resolution – psychology and maybe a touch of reverse psychology.

First, let’s review 2012 for those of you keeping track at home. It started well with eating better in an attempt to lose the weight I had previously lost and regained, I quit smoking (for a time), I fell in love, I learned first-hand about Baby Mama Drama, I got heat exhaustion at work, I got engaged to an old flame, I cut off my hair for Locks of Love, I got laid off from work and went on unemployment, my dog got fleas for over a month, I fell out of love. Unemployment got messed up for six weeks and I couldn’t pay my rent and started to get evicted. The VA finally approved my disability for Fibromyalgia, but lowered one of my other ratings. I broke up with my fiancé, missed my Grandmother’s wedding, got a job offer in Los Angeles, moved to Los Angeles and started a new job. Stress started to weasel its way back into my life again and led to severe Anxiety and Depression like I had not known in a long time, I stopped working and started to go to more doctors and get on more medications. I started a blog, I started a Twitter account, I started to wonder if my day-to-day had changed forever. I ended 2012 not wanting to be anywhere, not wanting to see anyone and not knowing what to do – about anything.

So here we are, January 2013, and I have decided that rather than make resolutions, I will state a few things that I don’t want to do this year – some I truly hope not to happen, others I think that if I fail at them, it will be a good thing. Here goes: I’m not looking for a relationship, I don’t want to torture myself trying to quit smoking, I don’t want to keep feeling useless and afraid of myself, I don’t want to get fatter, I don’t want to be destitute and wonder when my next meal will be or where I will live. I won’t go off my meds because I forget or think I am better without, I will try not to sweat the small stuff, and I’ll try not to forget about consequences and what leads to them. I don’t want to miss out on family gatherings, I will not rely on others for my well-being, I won’t overwhelm myself with tasks and impossible goals and I won’t forget that I am only human.

Aside from a scant number of references of theological beginnings of New Year Resolutions, Wikipedia cites a Wall Street Journal article, “Blame it on the Brain” by the controversial journalist/blogger Jonah Lehrer focused on “The Science Behind Failed Resolutions.” It explains how the portion of the brain that controls willpower, the frontal cortex, “is also in charge of keeping us focused, handling short-term memory and solving abstract problems.” An overload of tasks and subsequently a lack of willpower (giving into temptation) seems inevitable when you set multiple resolutions for yourself at once; you may believe you are trying to improve yourself but instead you are setting yourself up for failure. Pace yourself, research what it takes to form habits and plan how you will reward yourself. Give yourself enough time to attain the result you are looking for before moving onto the next goal.

In the past, I’ve started eating better, quit smoking, started exercising and maybe even threw in one or two other behaviors that were not my usual habit. That is why I have failed. Knowledge is power – and learning more about the brain and how it works, not to mention more about my specific disabilities, may give me the knowledge to harness my willpower – or at the very least, give me a better understanding of how to get my hands on some.

OstrichSyndrome I keep hoping (even thinking) that I am feeling better as the days and weeks pass. However, I tend to sink back into a very dull and dismal thought process that I am extremely uncomfortable with and I fall into what I have categorized as “Ostrich Syndrome.” I find it akin to, but rather separate from, “Fibro Fog” that is generally associated with Fibromyalgia.

Now, by no means did I coin this phrase, but I did Google it to ensure that I’m not just insane. The 31,600 results that followed assured me that this ideology exists, although mainly used to characterize business management and how this “Syndrome” pertains to the inner workings (or lack thereof) of a business plan or organization, or political denial. Or so I have gleaned from perusing some of the said Google results. (On a sidenote: it’s also the name of a band with a track called Prince of Babylon produced by One Million Heist, “a non-profit independent netlabel, with various genres and artists with one goal, to be heard.” Some very interesting tracks are found on Sound Cloud).

Urban Dictionary has the first result and closest description of Ostrich Syndrome as it pertains to myself and how I feel when I just want to close the shudders (as though anyone has shudders anymore), not answer my phone, eat snacks instead of meals, and couch potato it all day – which may include an afternoon nap while I wait for night to come just so I can go back to sleep. Ineteresting enough – no anxiety that I can tell. I know I have responsibilities, I know I have bills to pay, I know that there are things to do that really shouldn’t be put off until tomorrow – I just can’t seem to make myself give a damn. Hell, I was supposed to hang out with a friend today who is off from work (whom I’ve been hounding to hang out with me). I was also supposed to go to a performance tonight that two of my other friends are in only once a month. I just couldn’t pull my head out of my ass to do these things – because I’m busy hiding – hoping that hiding will make my problems go away. Newsflash: it won’t.

I would like to give a shout out to a fellow Word Press blogger, Jackson Quigg Associates, who gave me even more insight into Ostrich Syndrome and a term I was previously unfamiliar with: Permissibility. The blog states that it “occurs when someone allows something to continue to happen, even when they’re in a position to stop it or have a significant impact upon it.” I am allowing this to happen. I am my own enabler.

“First step is realizing you have a problem” so they say. Great. I am aware that I am this way. Now what do I do about it, especially when I allow it to happen and don’t give a rat’s ass? I’m stumped. How does a broken one fix themself? That’s worse than “the blind leading the blind.” And is this something that I can fix? Is it a part of my diagnosed Depression, Anxiety and/or Fibromyalgia? Or did I get blessed with other shortcomings as well? Only time can tell.

Have you felt this way before? How long did it last? Any suggestions?