Showing posts with label frustration. Show all posts
Showing posts with label frustration. Show all posts

March 16, 2011

Waiting



Over the years, I have spent countless hours, in countless waiting rooms, in countless doctor’s offices.  As such, I have had ample time to observe about their layout, décor, entertainment options, and the people they hold.  During this time, I have noticed several similarities among the rooms.  For starters, it seems as though the majority of waiting rooms were designed in the 1980’s and have remained frozen in time.  They tend to feature either a green and pink motif (especially OBGYNs and the more girly offices) or an industrial red and blue theme.  Fake plants and seasonal decorations are carefully placed to provide some sort of low maintenance decoration.  Irreverent scenic photography and rejected framed prints from someone’s house (or grandma’s house) adorn the walls.  Typically, there are offerings of pamphlets and there are always magazines to read (I personally don’t touch them in fear of germs).  You know that your wait time is going to be long if there is a TV.  

In my experience, the best way to spend time in a waiting room is to fulfill their designated purpose, just wait.  I’ve brought books before but I can never seem to concentrate due to the nerves of the upcoming appointment, the feeling of being sick and in a daze that has warranted the appointment, or the chatter of my fellow waiters.  The other day I was in a particularly foul mood when I found myself sitting in my general practitioner’s waiting room with a red, swollen, possibly infected knee (that still remains unexplained).  The week had been a bad one as I was in the midst of a flare up within my now 6 month long total life flare up.

At the other end of the row of chairs I was joined by a mother and daughter pair who were coming in for a regular check up.  The mother was older, probably in her 70’s-80’s and the daughter was accordingly younger, somewhere among the baby boomers.  I am slightly ashamed to admit that during this wait I found myself eavesdropping (they were talking pretty loud and c’mon, we all do it, right?).  To say that the mother was a whiner would be an understatement. I understand that most people aren’t their “best selves” when they have to go to the doctor, but on that particular day I didn’t care to take that into consideration.  Essentially, the gist of the woman’s complaints were that getting old is miserable and that no one can possibly understand what its like until they get old too.  She had a cane and was saying how troubling it is to move at a slower pace and require so much rest.  She didn’t want to be at the appointment.  She probably wouldn’t be able to remember what the doctor was going to say anyways, and all she wanted at the time was to put her feet up and take a nap.  

On a good day I would like to think I would have been compassionate and even empathetic in this situation because I totally understand the woman’s feelings.  However, on this day, I just wanted to smack her.  There I was, also with a cane (for my knee), also wanting to be home and in bed (anywhere but that goddamn waiting room), and also anticipating an appointment where I would be in a fog.  The difference between that woman and myself?  I’m 21!  I don’t know what her life has been like up until this point, but the simple fact that she was at an age where it is expected and acceptable to slow down, while I am in my youth and facing the same challenges felt like a major slap in the face.  

While chronic illness is universally challenging and life-altering, it holds a different significance for young people.  I have been sick since the age of 14.  Because my illness emerged during my teen years, my symptoms were often associated with normal changes of puberty and “teen angst”.  It was easy for me to be labeled as depressed and sent to the psychiatrist when tests came back negative.  In addition, I was vulnerable to deferring to authority.  I came to believe that I really was just depressed and that my symptoms didn’t go any further, even when I did not improve with antidepressants and therapy.  As is the case with CFS patients, especially children, it took me 5 years to get a medical diagnosis and 7 more years to find appropriate treatment.   

 At 21 years old now, chronic illness plays a large role in my development and the choices I make regarding my future.  Getting an education has been an ongoing struggle that I continue to face.  Sadly, my class will be graduating this year without me.  After graduation, many of my friends will be trying to get 9-5 jobs, traveling, joining the Peace Corps, who knows?  In my eyes their possibilities seem endless, whereas, I cannot plan past this week.  I also feel like having been diagnosed earlier in life, my entire life path is more affected by illness.  Will I get married and have children or will my illness get in the way?  Will I be able to live where I want or will I have to stay close to my parents and doctor?  There are a lot of questions that remain unanswered.  The other day my dad told me a quote he had heard that pretty much encapsulates the way chronic illness has forced me to live in the present.  He said, “G-d only shines the light at your feet because if he shined it on the path in front of you it would be too much information.”  In a way I think that is my motto.  I keep putting one foot in front of the other and living one day at a time in the hopes that I am following a path that will make sense for me in the long run.  And in the end, I think that’s the best we can all do.  Nothing is ever for certain. 

January 30, 2011

What to Do?



It’s 11:11 AM and I’m sitting on my bed with a huge mound of clothes in front of me.  I woke up about an hour ago determined to make something of my day so I decided to unpack some of my boxes I brought home from college.  I can’t believe I have so much clothing.  I remember buying it and wearing it but now that I’m unpacking them, they don’t even feel like mine.  Who is this girl who wears sundresses and business pants?  Why do I have these tops for going to parties and out dancing?  This isn’t me anymore; but I so wish it was.  I wish I had a place to wear the dress I wore for my first anniversary with my ex boyfriend or that sundress I wore when it was hot enough to go to the beach.  

Besides the fact that is winter, I can’t picture my self doing those things now.  My laundry is done every week and it consists of sweat pants and pajamas.  I have nowhere to go, no reason to get dressed up.  I haven’t even unpacked my jewelry yet because I don’t bother to spend time adorning myself anymore.  What’s the point?  I’m not trying to impress anyone or even meet anyone new.  I’m just trying to get better and that means I rarely leave the house and when I do it’s mostly for physical therapy.  

So now here I sit, paralyzed, looking at all of these clothes from this past life I once had, wondering what to do.  I don’t want to put them in my closet, a constant reminder of what I can’t do.  But I’m not going to get rid of them either because I hope to wear them again some day.  By then, who knows what will be in style anymore.  How long will this rehab thing take?  And who will I be by then?  Will I still be a person who needs a top to go to the club?  Will I ever even be able to dance again?  I know I’m supposed to live in the present and “take each day as it comes” but I can’t help thinking of a life beyond this because the life I’m living right now is not enough.  I can accept it for right now, and I have, but not forever.  Frankly, it’s testing my patience and changing my identity.  This illness is so isolating and it has taken away my zest for life.  I don’t know how to spend my days anymore.  I’m always looking at the clock amazed at how slowly time passes.  

When I used to sleep the day away it felt like time was escaping me, but now that I’m awake, I spend my hours in pain, trying to pass the time as quickly as possible.   That’s no way to live but I can’t find an alternative right now.  I do my physical therapy exercises, I’ve tried painting, making jewelry, doing puzzles, I’ve read a lot of books, I do a little school work, but it just doesn’t seem to add up to anything meaningful.  Everything seems to pale in comparison to the challenge of getting better.  

And looking back to where I was a while ago, I am improving.  I can see that.  But sometimes is just feels like old problems are getting replaced my new ones.  I used to sleep all the time, now I’m awake and in pain.  I used to get viruses all the time, now I have a consistent stuffy nose and sore throat.  Hopefully I’m at least trading up but I can’t be so sure.  And the options for medication are running out and the pressure is on me to get back in shape.  I want to be good enough to walk up the stairs without feeling winded and ready for a nap.  Hell, I want to walk anywhere without being ready for a nap.  I knew recovery wasn’t going to be easy but I just don’t know how much more I can take.  And of course, I don’t have much of a choice.  This is the last hope.  And I have to rise to the occasion.  Right?