Sunday, March 25, 2012

B.S. - not what you think..I'm LOL

Some people are just funny.  I know many such people, and it helps.  Finding humor in any situation is the surest way to ease the pain.  And as I like to do, give credit when credit is due, a thank you for the humorous exchange of text messages I received last night when I did not have enough energy to meet an old friend who happened to be in town...trying to be honest about why I was "on the desert"- in the quick exchange of a text message is not the easiest, but I didn't want to lie or make up some false excuse- and the forthcoming exchange I got made me laugh - and laughing always makes you feel better - so maybe I will try some 5 hour energy drink - and I will definately blame Wade when everything else fails - why not, who knows... (and I apologize for a bit of inside humor here, so please insert your own good memories of old friends)

There is a huge difference between someone making "light" of my situation and someone making the best of it using humor, something when I am a bit isolated in the day to day grind of it all is easy to miss  - and the sarcasm brought me back to our high school days, days spent dancing in LaBott's basement to Neil Diamond, late nights of "phone fun"..."ma'am we have your cat..", Three Guys in Jumpsuits making crazy videos.  It was nice going back in time, a time where there were plenty of problems, but problems that the heaviness of  it all doesn't' sink in or isn't the burden of a 16 year old.  While we were in the basement, upstairs was a grandmother fighting dementia, a mother fighting cancer, and hopefully the hustle and bustle of teenagers in her house provided a necessary distraction rather than an annoying inconvenience.  I am pretty sure, the later may have been truth...but again, the protectiveness of a mother came out, putting her children's escapism in front of her own privacy.  Thank you Nancy - you are missed.

When my niece was here she kept taking my phone and taking massive amount of pictures and videos, and when I went through the 300 plus of them what caught me off guard were the images of myself that were caught in the background, and the story they told.  I noticed the pained look in my face, the holding on look of getting by when I didn't realize someone was looking, the fingers pressing on my temple.  These pictures and videos made me sad, and I realized I don't laugh as much since this illness.  Those around me day in and day out are constantly helping me with one thing or another, and with that spontaneous moments of laughter are fewer and further between - its not any one's fault, its the reality of the demands and stress this illness ripples through those you love, the exhaustion of the sameness of it all - and those text messages last night from someone on the "outside" were a pleasant distraction - and I hope that they are the new normal in the near future.

Rainy Days and Sundays Always Get Me Down...

Friday, the morning after the MU game, I didn't wake up until 10am.  When I did, it was difficult to move, I started one of my mini mantras - get out of bed...get out of bed...feet on ground...head off like a band-aid I ripped myself out of bed and slowly got to the task of making breakfast.  Again, the single minded thinking began, and no sooner am I eating breakfast when a new mantra begins... eat..back to to bed...

So by 11am I was crashed back into bed, my doctor appointment was scheduled at 1:30pm.  So as my head plummeted to the pillow I was doing a mental calculation of how long I could lay down before I would need to get up, get ready and eat before heading out...12:15, 12:30 at the very latest - because I eat slower than black molassas pours I need extra time.  At 12:45pm my phone rings and wakes me up from a deep sleep, its my mom seeing how the game was last night (minus the loss) I,  barely audible, tell her I have to call her back, disorientated and now wondering how the heck I am going to get it together and get to my appointment - I contemplate not going - but its a Friday, and if I don't  make it and miss out on a treatment that could potentially make me feel better, it puts things off three entire days.  So I slowly make it out of bed, mantra now - juice - get ready - juice - get ready.  The second I have a  sip of juice I feel like I am going to be sick - so I make it to the bathroom - I want to just forget it - who cares - its one appointment.  I am thankful I am not throwing up, but I have the nauseous chills and goose bumps on my arms, but thankful that my stomach is at least moving in gravity's direction.

I make it out of the bathroom, I look in the mirror and can't believe that is me staring back - I look old and tired, vibrant would not be an adjective that comes to mind.  I am just about to throw in the towel and think I just can't' F'ing do this anymore, I don't know how I can keep doing this, like you do when you are in the middle of a dense forest and can't find your way out (not that I have ever been in the middle of the forest, but I imagine)  and the "ding" on my phone goes off - I go to check it and this is what I find...

and I find the strength.  I have a blog that I haven't published about Kids - and my opinion on the annoying phrase that parents often use that "they never have known love until they had a child" and I won't get into it now but to say, I get it, I think its a misdirected quote, but I get the jist.  I believe what people really mean, is you will never know what it feels like to be given something so fragile, that depends so profoundly on your actions.  I understand the will do anything for your children that stems from a visceral place and I understand what it feels like to fight when you feel like you have no fight left for someone other than yourself, because if it is only a fraction of what I feel when I see my niece and nephew, it is enough to break you and build you simultaneously.  Much of it is stems from a "selfish" place of "I don't want to miss a thing" while the other can't bare to not be there to help them from whatever they need...

So, as I left and re-entered the bathroom many more times, called my doctor and said, "I know you tell me not to call when I am going to be late, but I am going to be very late, so let me know if you can't fit me in..." and the secretary doesn't call me back - I garner what strength I didn't think I could find and I make it there.  

When I get there, we determine its time for round 3 in one week of the UV-Blood Irridation - and I can't help it but I start to cry.  I just feel so awful and the thought of the treatment, despite knowing I will most likely feel stronger in the long run just seems like too much.  So, I focus hard in my mind of the rainy day picture and hugs sent via the air stream, and close my eyes and I do it.  I do it for the hope that I feel better for myself, but what pushes me is the hope that my niece and nephew get the aunt that existed before they did.

When I leave the office, I ironically thank my doctor for being so patient - "calmly waiting" as she did, careful with my fragile self - knowing when to push, and use extreme care when the first vein didn't work and she asked me to hold the cotton and I'm so nervous I don't realize that the tourniquet is still on and I hold it and bend my arm - not a good combination to stop blood flow - and she patiently coxes my arm down and holds it herself -tells me to breathe and think of something pleasant - and through a forced smile I did.

Loathing and Longing

I only read one other blog about Chronic Fatigue, Sue Jackson's - not because other's aren't good or insightful - but as I have said before, you can fall down the rabbit hole way to quickly if you start reading too many stories - or at least I can.  I really enjoy Sue's blog and a blog that you connect with is like meeting a good friend for the first time - you just click, you don't know why - but you feel connected to this person.  It seems that often what I am dealing with or feeling falls serindipitously with something Sue has wrote.  And this happened again this weekend.

My family are die hard Marquette University basketball fans.  When I was little, we had six season tickets, so most always it was my grandparents and my parents and my aunt and uncle's ritual.  On those nights, since my aunt and uncle lived closer to downtown, my sister and I would stay at my cousins where we would all hang out while our parents were at the game.  Most times it was pretty uneventful, but put 5 kids together and things happen.  The pizza gate incident and the alarm incident both taking place while our parents were at MU games.  Pizza gate, in hindsight, was particularly  funny, at the time not so much.  I'm going off shady details but my Uncle and cousin had gone to pick up pizzas, and they had to wait forever, and there was some confusion - so they left and went elsewhere.  So after our parents left for the night, (and i'm not even sure now if it was an MU game) but anyways they left and about an hour later the door bell rings and its a pizza delivery man - and my cousin and I are scrambling for about 40 or 50 bucks - it was a lot of pizzas.  There was a frenzy in the house, as we of course think we could go to jail for not paying for the pizzas - not putting two and two together, that these are pizzas from a different place, and we didn't order them, it was a prank - the days when kids actually did punk each other, where some "mean girls" sent pizzas to my cousin's house.  I also remember the after math where my intimidating attorney uncle grilled the "mean girls" about what they did, how they scared us, what were they thinking - I'm sure my cousin Kelly must have been mortified - but you don't mess with my Uncle.

Alarm gate was also controlled chaos.  My Aunt and Uncle's house had been broken into, after which they got an alarm system.  The alarm came with a little remote control that looked like a garage door opener that my Aunt kept on her bedside table.  If you thought someone was breaking in, you hit the button and the loudest alarm ever would immediately start blaring.  So on this night, our parents called to check in on us from a restaurant and my little sister at the same time hit the garage door looking remote and the alarm begins its deafening blare, and we are all screaming, and some of us crying, and they are yelling at us through the phone to just go downstairs and turn it off!  I still am laughing at how crazy we got - my cousin Tom and Katie being the "brave" ones finally got the courage to go downstairs to end the chaos.

Well, that was a side trip down memory lane, anyways it was a huge treat to be able to go to a game when I was little.  Marquette games are social events, besides basketball viewing, the half time ritual of heading to the mezzanine and catching up with people you know well and others that you really only see during the long winter months - when the sky is gray and the air is cold - MU gets you out the house -

The last few years have been really good to MU fans, and March Maddness is a highlight.  My Uncle, the Commish - has always been the organizer of a pool - very legal I might add - and last year was the first time he wasn't bogged down by a huge binder of everyone's picks b/c we finally went cyber!

This year we were thrilled when we got to the place we are staying that the cable had the Big East network, so we didn't miss a game while we have been gone - and then the icing on the cake was that if Marquette made it to the Sweet Sixteen they were in the West Bracket and would be playing in Phoenix - and they made it!!!  So Thursday night was my big outing - I told my doctor I couldn't do anything stressful because I needed to make it to the game that evening - when we got back I went immediately to bed, and like many times before I was laying there at 4pm thinking how am i going to make it to this game - one step at a time - I made it out of bed, into the shower, and then had a big meal so that I wouldn't be hungry - makeup - lipstick - I can do this.

Marc had gone ahead of time and sold our two extra tickets for the previous game.  We found parking right in front of the stadium, but when we got in - the chaos started.  The Phoenix arena is very deceiving - they built this beautiful entrance around a crappy old stadium.  So you walk into an entrance that is slick, shiny and new.  It's airy and spacious, and then you keep walking and you enter what felt like a prison to me - Marc had said, do you want to wait out here for a bit - and there was only 20 minutes before the game, so I said no - let's go in - not realizing what I was entering.  First the noise - the people taking our tickets are followed by others yelling - "No Re-Entry" "No-Re-Entry" my prison metaphor taking on a whole new meaning - and now there is no normal flow of traffic - there are people entering for the MU/Florida game and disappointed fans leaving from the previous game - we only have two seat sections to get to but we are not moving.  Its a hot stale air mosh pit, and my eyes begin darting all over and the noise and commotion are all too much for this fragile nervous system.

When you live such a contained life for so long, this is such a shock to your system.  I'm near tears, and I know I can't leave, and I am just looking at everyone else, thinking "does this only bother me?"  Surrounded by people and feeling completely alone.  Marc gets in line for drinks, and I duck to the nearest gate, walking under the 7 foot cement entrance to the court - and my mind keeps taking it all in - the what ifs...I call my mom, but its too loud to hear, my legs feel weak beneath me and everything is pretty blurry.  We make it to our seats, and as my inner dialogue is raging, a piece of home is sitting right in front of us.  I was hoping we would see our friends there, but with all the MU fans, found it unlikely, and like a gift, there they are - people I know from home.  The ritual of our home stadium is here in Phoenix, and a bit of calmness enters me.

We lost the game.  The entire first half I was just focused on the fact that I made it there - and adjusting to the "real world" - the second half I actually was able to enjoy myself - but when we got home I was exhausted.  Much of it do to participating in something out of my comfort zone - I have always hated crowds, but it never before would mean the next day I could barely move out of bed.  But that's what this illness does, mental and physical stresses both have the ability to wipe you out.  Your reserves are gone.  And as I tried to get out of bed the next day - one foot in front of the other - there was no denying the effects of the outing the night before -

I thought about the previous night, watching all the people, wondering what else others were dealing with hidden from view.  Much like the facade on the stadium, smoke and mirrors, all of us have days when we put on a pretty face, smile, interact, we appear healthy and normal but on the inside there is no running from the worn out, tired narrow cement hallways, that are the true reality.

On Saturday, I read this post - by Sue - and it was comforting to be understood.  It's a quick one - take a look - if you read the comment section, there is one in particular - that rings so true, people not understanding the effort you make on a daily basis to be present, to make it to things, etc..something i could so relate to.
Loathing and Longing

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