Last Day of Summer 2016

Permobil Chair has not broken down in the last month.  I find that surprising.

What changed in year nine post injury to cause those massive 'Atomic' spasms to begin.  Previous to year nine, spasms would occur, most commonly in the evening, then run their tormenting course and leave me alone until the following evening.

In my ninth year - post injury, spasms still occurred during the evening hours but now they were so powerful and violent that I felt I was being disjointed - femur ripped right out of the hip socket with each massive spontaneous contraction.  The pain is excruciating!!

Prior to year nine, spasms primarily occur in the evenings but once they dissipated and died off, the would allow me to sleep uninterrupted until morning.  Now they can also occur, most often between 2:00 am and 4:00 am.  The generally do not wake me. I wake on my own to shift and change position which tends to trigger them.  Once started, they build in frequency and intensity until they die out, most likely hours later.  It is impossible to sleep or get any rest for that matter when one leg or the other (left is the worst) contracts so violently that it threatens to pitch me from bed.  You also can't use a laptop or read or do any other meaningful task while they are throwing you about.

My wife is out of town currently for an extended stay which now allows me to let out those screams of painful torment when my left leg tries to tear itself from my hip-joint.  The sciatic nerve also becomes either pinched or stretched adding further misery with each contraction.  Contractions every 3 to 10 seconds, violently, painfully, for hours on end.  It feels good to scream rather than to clench my teeth and grimace from a pain that brings tears to the eyes.

I feel that any effect the Baclofen had on my spasms has been lost. Do I find some neurologist and request a Baclofen pump?  It seems that the only ineffective treatment is to constantly increase the dosage.  An every increasing dosage that races your increasingly resistant pain to your most welcome grave.

I slept through last night.  The two nights previous, spasms kept me from sleep - both days between 2:00 am and 4:00 am.  Daylight doesn't wait!  What will tonight bring?

I stopped living long ago.  I exist...

*  *  *

Atomic Spasms

It is what I’ve come to call “Atomic Spasms”

…And they started around March of this year (2015) while sitting one day after work and waiting for my bus to arrive.  Without notice my right leg lifted up off the ground, as if my kneecap wanted to hit my chin.  I was so startled and momentarily had such ‘eye watering’ pain that I let out a yelp, drawing attention from those nearby.  What the &%*# was that?  Another soon followed, and another.  

Sometimes every day, sometimes every few days, these intense spasms continued.  I realized that nature had added another horrific physiological device to my toolbox of torment.

These spasms were unlike the ones that I had experience in the eight plus years since a spinal cord infection had left me a paraplegic.  While previously I would experience spasms in my right leg or left back & hip, the suddenness and intensity with which they presented themselves was different.

Previously, the first sign that spasms were imminent was with a ‘creepy’ feeling in my leg, particularly in the calf, which, though hard to describe, felt something like an overall electrical buzzing.  The neurogenic burning was turned up several notches and my leg felt as if it was filled with sparkling hot soda water with the millions of bubbles bursting as they rose to touch the inner skin surface.  An imaginary coil spring in my leg would be wound to a point where it would slip and suddenly unfurl, only to start winding again.  That ‘spring-winding’ feeling gave a second or two warning of an inescapable leg-jerk.  The leg would raise, kick, and fall back to whatever surface it was resting on.  When in full spasm, the leg could not be pushed down using all my strength as the contraction was so powerful.  Spasms might last only a few minutes, but more likely they would torment for hours – the longest being about seven continuous hours of rhythmic  jerking, about once every five or six seconds.  Pure hell!

So I bring the issue of spasms up with my family doctor.  “Why, you’re already taking anti-spasm medication” (Baclofen).  That was that.  When I previously sought relief with Botox injections, the specialist who examined me checked for spasms by holding my calf and foot, then quickly flicking or rotating the foot –up and down.  He had a definition for spasms which was something like “tension through velocity”.  The foot may move with ease when moved slowly, but when done quickly, tends to hang up or offer resistance. (my memory could be quite wrong on this).  Baclofen reduces this sort of “spasm” but the “spasms” that were tormenting me, and those that athletes speak of, are totally another kind of affliction.  I don’t believe General Practitioners understand this distinction.

These Atomic spasms ignited without warning.  The range of motion the leg was driven was extreme.  Lying flat on my black, the extended leg would violently fly up, again with my kneecap reaching for my nose.  At the extreme contraction, the leg would freeze in place for two or three seconds then drop back down flat, only to be repeated again, and again.  There was a rhythmic repetition to these spasms as well, but not quite as uniform as the usual, “run of the mill paralytic spasms”.  They too may repeat, say, every three to seven seconds, but the Atomic spasms may miss a firing, or may double-up on firing with two closely spaced ones.

Try this.  Take any appendage of yours, be it your arm (elbow), hand (wrist), leg (hip/groin), finger (joint) and bend it as far as it can possibly go – until your eyes begin to water from the pain.  Now, move it another inch in the same direction!  That is how these ‘Atomic Spasms’ feel acting on the joint involved joint!  I am currently nursing a sprained groin from the repeated explosive spasms which have pulled against the ligaments anchoring my femur that I have sprained myself.  What makes it worse is that the following night, the spasms repeat and I re-injure myself.

These ‘Atomic Spasms’ as the previous ‘regular spasms’ are curious as they almost always come on in the evening or at night.  Just when the day is finished and you think you can relax, you find that nature will not let you.  Whether the painful or regular spasm, they are annoying, detract from your attention to other matters, rob you of rest, and just plain ruin any quality of life you may still have.

Now, the ‘regular spasms’ which I’ve experienced almost every night since my injury, almost always came on at night, ran their annoying course and then allowed me to sleep the night without wakening me.  These relatively new ‘Atomic Spasms’ start up anywhere from early to late evening.  What is worse is that they often come back several times in the evening and often right at bedtime.  You can well imagine that it is impossible to sleep with your leg pulling up and dropping down repeatedly for hours on end when you have to get up and go to work next morning.  These ‘Atomic Spasms’ can start back up by simply rolling over in bed.  Any movement may reactivate them!

Catastrophe!

 Launched by an 'Atomic Spasm'

It was August 14^th, 2015, almost bang-on 2:00 am.  With a loud crash, I wake up and realize I am on the floor.  The first time ever!  I have fallen out of bed….no, more likely catapulted out of bed with a spasm!  I am currently using a single hospital-like bed but without any railings – because in about eight years, I had not needed them.  Well, what to do?  I rummage around in the dark and locate the switch to my bedside light.  The top of my mattress is only about two feet above the floor but it looks like Everest from my perspective.  I have strength, but the joints have all tightened – ligaments and tendons have shrunk from limited use.  I can get onto my knees but I cannot get my feet underneath to push up.  I try to lift myself up using my motorized wheelchair’s frame but it shifts and tips.  There is nothing around me that I can grab onto and hoist myself up.   Grabbing the mattress only shifts the bed.

What is worse –my wife is out of town for a few days and I am on my own.

Now it is around 2:20 am and my knees already have carpet burns from the friction.  I look around and near my stereo I see two metal ‘tradesman’ suitcases in which contain wires, cables, microphones, and various electronic paraphernalia.  That might be enough to bear my weight if I use it to bump up a step closer to the mattress surface.  So I pull out the suitcase and with it comes a small utility table spilling more electronics, a three-tier filing drawer filled with loose papers and a variety of pens, pencils, erasers and so forth.  Here I now sit amongst fanned out papers, desk utensils and wires.  I drag the suitcase next to the bed and try to climb up with my knees.  No luck – and the suitcase has that fine-diamond texture which further removes skin from my knees and shins.  Try as I might, I cannot get up!

At this point I am bathed in sweat and my heart is racing.  I thought of writing a note in case I have a heart attack and those who discover me think I was beaten and bloodied during  a home invasion.  I regroup and give it another `all or nothing’ effort.

I turn on my electric wheelchair and position it parallel, with myself between it and the bed.  I put my bare feet against the drive wheel and push up with feet and hands to bump my backside up onto the suitcase.  With a second identical suitcase beside the first I try to twist around to replace my butt with my knees, still trying to hold my feet to the drive wheel so as to not slip back onto the floor.   Struggling, I push with my feet and grab the far side of the mattress to slither aboard. 

 Somehow I make it...

I lay there for a few minutes to catch my breath and cool down.  Rolling my view to the damage, it looks like an Oklahoma tornado took a detour through my room.  Everything scattered about but what now catches my attention is that there is blood everywhere.  In the process of rescuing myself from the floor, I had abraded both my shins, skinned my knees and worst of all, I managed to tear out two toe-nails from my left foot.  My foot was still bleeding so I wrapped it up quickly and decided to try to get some sleep.  After my hour long ordeal, it was now just after 3:00 am.  I had to get up at 4:50 in order to get ready for work.

A fitful sleep followed but I got up.  Picked up what items I could to quickly straighten up.  My science background came in handy.  With a bottle of hydrogen peroxide from the cabinet, I poured generous quantities onto the bloodiest spots and watched red bubbles foam upwards.  Dabbing with a wet sponge made the destruction I had inflicted on the room almost disappear.  I do wonder what surprise hides in the underlayment when carpet is taken up during the next renovation.

So, I made my bus ride to work.  The driver asked me if I had run over a small animal as I had forgotten to clean off the wheelchair tire I had pushed against with by bleeding feet.  It was a bloody mess – but a lab always has some H₂O₂ around and I was able to retreat to the washroom to clean it off.

With summer shorts, it was hard to hide my scrapped knees from my wife.  I mumbled something to satisfy everyone’s curiosity.  Feet were easier to hide.  No need to worry my wife with my expedition to the nether reaches of the floor.  No need for her concern if I was ever to be left along again.  So Sssshhhhhh!

A couple of more times I woke with a start thinking I was about to take that trip to the floor again.  Perhaps I was, perhaps not.   A physiotherapist once told me that a person’s leg consists of about 17% of their total body weight.  Well, when lying on your side and the leg closest to the sheet suddenly explodes with a spasm shooting it off edge of the bed – the momentum just about takes the rest of you along!

*   *   *

So what has changed some eight years post injury to cause these ‘Atomic spasms’ to start now?

And why do spasms of any kind occur much more frequently in the evening or at night?  Does the body physiology change that much?

What I believe doesn’t affect my spasms:

-Position:  Legs, whether hanging down all day as if sitting or up all day as if in bed does not seem to have any effect.  Calves do feel harder at night – due to muscle contraction or fluid accumulation?

-Exercise:  Whether spending a quiet day, having lots of activity or even exercising at the gym, seems to have no effect on the occurrence of spasms.

-Circulation:  Some days the legs are warm to the touch, other days cold to the touch – with the same amount of activity.  Regardless of perceived temperature, it doesn’t seem to affect spasms.

-Weather:  whether, cold or hot, rainy or dry, etc.  spasms occur at about the same rate and severity

-Hydration:  drinking lots of fluids or remaining somewhat dehydrated seems not to affect spasms

-Pressure:  whether there is pressure against my legs or my back at the site of the injury, there seems to be no correlation to the amount or severity of spasms.

So what, if anything, am I missing?  Is it related to anything at all, or just one of nature’s little jokes on paraplegics?

Seriously, they are so devastating that I have lost it altogether and cursed my God for creating such and affliction.  There is no quality of life...only torment!

Life really Sucks!

 *   *   *

Pain (…and more)

Pain is an unseen disability.  It can rob you of your life! 

 Yet nobody will know...

It takes a second…….Furnace purrs into consciousness..  Streetlight filters through  fluttering curtains,  Neon numbers tell me its 3:12 am.  Awake…..and there it is.  Years have passed since my injury but every waking moment is greeted by pain..  It will be there tomorrow, the next day, the next year…..and for the rest of my life.  Not a happy prospect.  Not when you unintentionally find yourself praying for a shortened lifespan..

Neurogenic pain.  Intensely burning pins & needles from the knees down.  Periodic sensations such as the calves begin to swell up to twice their size and are filled with swarms of angry bees, stingers ramming the insides, trying to get out,  Instantaneous shocks that may be as minor as a repeated pin-prick to the thigh or as startling as an instantaneous electrical shock to a toe -every bit as intense as if you had stuck your appendage into a 120V electrical socket.  Such a startling reflex brings stares from those around.  What happens in your spine - at that point of injury, that suddenly decides to trigger this response?

Spasms!!, my God, spasms!!…  Just when I think I can relax and unwind from the day, my right leg, or left hip might decide to start jumping.  (funny, never together - must be some biological basis for that)  It starts off slow, the tension can be felt building - then it fires!  A jerk…followed by another, and another, and another…..on and on often for hours.  Leg flops around on the bed like a fish that has just been landed!  So strong that any individual spasm can lift me off the bed.  If my leg would be tied down, I swear the physical action could snap a bone.  My leg may involuntarily and repeatedly raise up off the bed a foot or more, over and over and over again until once again, inexplicably, it slows and stops.  A change of position, application of pressure, exercise, a massage -sometimes they seem to help but most often not.  The spasms mockingly seem to come on more frequently in the evening, as I said, just when you think you can relax.  What is it that triggers this?  Body chemistry?  Is it a neurotransmitter that has accumulated and now “drips” repeatedly, making contact with the receptor below?  Is it some rogue electrical signal, a spark that discharges across a junction repeatedly until that particular biological battery runs dry?  Is it the body trying to pump blood - contracting and relaxing muscles in order to get blood coursing through the legs? Yet as I said, exercise doesn’t seem to discourage these spasms.  Is there some biological purpose to the spasms or is it like a power transmission wire that has torn free during a storm and now lies on wet pavement, dancing and shimmering until power is cut?

Tone - that incredible tightness that no amount of stretching and exercise can counter.  Always stiff from the level of my injury in my back, to my toes.  How much is pure tone and how much may be contractures or adhesions, I can’t tell.  Tone always quickly returns soon after stretching or exercising.  Some elastic bands, you can stretch them out repeatedly but when you put them down on a surface, you can see it tighten up a bit more -that’s tone!  I feel that my torso is wrapped in elastic material which constantly resists my twisting and turning at the waist.  A secondary, related sensation is like “the outside of my insides are glued to the inside of my outsides“.  No other real way to describe it.  Layers just don’t slide smoothly over each other, but stick and “ratchet” (stick, release, stick, release, stick, release, and on, and on…)  Creepy!!

I’ve come to the conclusion that the total inaction, due to my six months of hospital bed rest, did as much damage as the injury itself.  Tendons and ligaments may tighten or loosen due to inactivity.  Layers of skin and flesh fuse to each other, as if glued  Contractures and/or adhesions are formed making what once were two surfaces, now one.  Achilles tendons shorten and retract causing toes to point downwards.  It’s a “catch-22” situation where you have to be on your feet almost constantly to stretch them out, yet you can’t be on your feet constantly because you are paralyzed!  A runner may stretch out their Achilles by doing a few stretches braced against a wall - all that is necessary between short sedentary periods.  But for those immobilized for prolonged periods, trying to stretch out the Achilles tendon is like trying to rejuvenate dried out, cracked leather and trying to make it soft and supple once again.  All but impossible!

Of course, once the “high priests” of medicine - the doctors, have come into your room and after a quick glance up and down your chart, they’ve coldly proclaimed that you will never walk again, it becomes written in stone!  It is a fact that shall not be contested!  It would be a sacrilege to argue, to deny. From that point on, any therapy almost appears to be doled out grudgingly, as if a wasted effort, rather than “lets try everything to maximize your chances”  “Come on buddy, prove me wrong -walk”.
I seized right up with the half hearted, one hour per day, (weekends excluded) therapy I received - often administered by unsupervised students.  Aggressive therapy soon after surgery might have helped -however, there is no money in the health care system for that - and that is the bottom line.

I’ll finish this post as how I started -  a few more thoughts on pain.  Pain is subjective.  I’m not sure if there is any absolute method to measure it.  Individuals exhibit different tolerance levels to pain.  Different injuries result in different pain.  Identical injuries caused by different means might elicit different levels of pain.

How might a spinal cord injury produce pain if produced by a crushing injury, or a severing (cutting) injury, or a biological injury (bacterial infection & their toxins, as was my case.)   If at the same level, does a crushing injury cause more pain than a severing injury?  Do the unattached, severed ends of the spinal cord still cause pain?  Or where the transmission is cut rather than altered, are absolutely no signals transmitted.  Do the loose, “dangling” ends below the cut, themselves generate pain.  Something I don’t know but I’m sure some of you out there can answer.  For me, bacterial growth with the production of various toxins and enzymes, damaged my spinal cord -plus whatever damage the surgical drainage itself did to it, causes an immense amount of pain.

My neurogenic pain is constant and so intense that, as I’ve explained before, I cannot  go for more that perhaps one minute before my mind is drawn to the pain again, and then again, a minute later.  That distraction, and diversion of focus from other matters in you life, in fact robs you of your life and may even result in dangerous inattention.

My spinal cord injury created an unperceivable (so slight, not apparent to anyone else) muscular imbalance in my back, torso, or buttocks, which has resulted in tremendous sciatic nerve pain.  Not like being stuck with a knife.  Consider it this way - Get a hardwood stool with no cushion and then sit on it.  Comfy?  Now get a pebble, about an inch in diameter and place it on the hardwood chair surface directly under your hip bone (joint).  Now sit there equally balanced. Still comfy?  Now sit there for a minute. Now sit there for an hour, a day, a year….for the rest of your life…  The sciatic nerve runs along side a blood vessel and with every beat of my heart, the nerve throbs and throbs and throbs!  On bad days I squirm in my seat, however no position can release the pain. An eight plus hour workday is spent with my attention diverted to the burning leg pain and the throbbing hip.  Nothing helps, not even lying on my stomach as the throbbing continues.  The only thing about the sciatic pain is that it does fluctuate somewhat.  Some days are better than others and it seems to cycle about every third day or so.  I believe on the days that it is bad, my squirming and tensing stretches out the muscle in the hip so that it sits properly for a day or two until it once again contracts and pulls the hip ever so slightly out of alignment, resulting once more in pain.  It is always there, just some days are worse than others

No drugs, no medication, seems to help in the least, yet I continue to take them as a desperate attempt to do something.  Exercise has helped to improve on strength but has had no effect on the alignment or pain.  Live with it I’m told.

As I already mentioned, it is hard to quantitate pain -the perception between individuals and same, but different injuries,  There is the Wong-Baker Pain Scale, shown below to which individuals can point out their level.  What those faces truly capture, I’m not sure but I would say my pain would sit at level 8 on most days.

 

It is the knowledge that this pain will be with me day in and day out for the rest of my life, that really hurts.