Thursday, May 3, 2012

Why can't you relax?

     I have found there is one thing that trumps the extreme torture of dealing with MS, trying to find medical symptomatic help in dealing with the torture of MS. Got strep throat? Broken bone? Open wound?  Need a tooth pulled? No problem, a simple emergency clinic or dentist can fix it, and in time you will heal. Got spasticity and muscle contractions 24/7 as a result of axon damage that will not respond to medicine prescribed by your neuro? Stand in line, deal with the pain, you're fucked .  Or I am anyway.
     If one is dealing with MS he or she will find that there are treatment protocols that most neuro's use.  Sure there are different disease modifying camps, Tysabri guys, Rebiff or Copaxone guys, several others now as well,  but in terms of symptom treatment it's relatively the same.  A course of solumedrol, or maybe maintenance infusions, baclofen or zanaflex for spasticity, gabapentin and Lyrica for nerve pain, sure there are others Valium, Clonazepam, botox injections,  but for The Greek not a damn thing works. Worse off they all share a common side effect. FATIGUE.  Who is the genius that thought adding fatigue to crippling fatigue was a good idea should be water boarded.  I've heard it all, "it's the mechanism of the medication," BS we can put a man on the moon, many years before we ever thought possible, but today we can't get a medicine that does not zombify me.
     So back to my nemesis, and the major contributing factor to my immobility, spasticity.  For those of you not familiar with this horror, imagine being at the gym and doing 7000 reps on the same muscle, or picture a 2x4 wedged in a vise and clamped down until the steel indents the wood.  Welcome to my world.  Mornings are usually the worst, as I am in full body erection, a new meaning to the morning boner, and incapable of bending my legs or torso.  It's quite a scene.  This continues throughout my day as the simple act of sitting up against the chair exacerbates my spasm and stiffness.  Imagine a steel rod running up your back from the lumbar region to the thoracic.  Sound appealing?  It is insane and there is not enough time or energy in me to explain in detail what and how my pain reveals itself.  I am referring to physical pain, forget about adding emotional pain, like gasoline to a lit fire it just explodes.
     Sixteen hours a day I have a polar ice pack covering my lumbar area, otherwise I just cannot cope. Think of walking all day with pebbles in your shoes, on a much much smaller scale, eventually though you will lose the ability to cope and emptying your shoe is a must.  I don't have that luxury, and my shoes are both full, and yes coping is becoming difficult.  But this is only half the story.  If you are lucky, you may get an appointment with an expert in the physical medicine department in a few months.  The nurse may even call you back in a few weeks, or you can call to find you are caller 7 in the rotary.  Frustration is too subtle a word, it is shear torture.  It's a living hell.
     So back to the protocol.  At this point my next step is the intrathecal baclofen pump.  Just what I want.  A hockey puck and a rat tail inserted in my abdomen.  First a lumbar puncture of a test dose will determine if I am a candidate and then onto the surgery if so.  I have waited weeks and weeks to get the injection, and who knows how long to get the surgery scheduled.  Back to my point, trying to find medical help for MS is like finding a needle in a haystack.  Unless of course you want to admit yourself, as the recording say "if this is a medical emergency dial 911",  laying in a hospital bed being pumped with steroids or morphine is an option, and can be extremely appealing on a bright sunny nice day while your buddies are on the golf course. 
     Simple little tasks that healthy subjects do without thinking, answering a text message, returning a phone call, grabbing a water, hitting the john, these things are exhausting to me.  No, distressing to me and anxiety riddled.  Laying in a chair watching a ball game? Forget it, the pressure and sitting create stiffness and pain beyond imagination. Comfort is not a possibility at this juncture.  If I don't return your phone call, or don't text you right back, you now have a better understanding of why.  This is the reality of MS, a cold hearted, relentless, thieving, thoughtless, game changing, life altering, joy stealing, pain inducing, heat intolerant,  time consuming, mind altering, family stealing, energy sucking, brain draining, immobilizing, passion grabbing son of a bitch. Boy his attitude sucks you say, well I have read all the self help books, do the pilates, massage, stretching, PT, eat well.  live in the moment, head all the advice of friends, cry once a day like Buddha did and talk to other struggling patients and the like, and I am not scorned, and not complaining, well maybe a little, but really just honest and a little pissed off. And deservedly so!  Go to bed with an ailment and instead of waking to find it gone, try finding it the same or worse, over and over, repeatedly for days on end.  It wont' take long for your shoes to be full.

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