Forward and Table of Contents available at: MS Diaries: Table of Contents
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Six months following a diagnosis of multiple sclerosis in 2002, I witnessed my poor little body rapidly disintegrate right before my eyes. The daily decline in size and function of my body was the most frightening experience I had ever lived through.
The entire 3-year experience instilled in me a tangible sense that my body was separate from who I really was. My body became a mere biological vehicle that carried me about my day. I call it my ‘mechano biological vehicle’. I envisioned my body as a rusted out Ford Festiva, barely making the speed limit on the Coquihalla.
At the height of my first attack, I often could feel that the three ‘major parts’ of who I was - my brain, my soul and my body - were all individual and uniquely separate. Yet these three parts of ME were totally dependent and interlinked with one another. During my remission, constant visualization and positive self-talk have helped my body heal, and quite often my brain would influence or be influenced by my body.
The first year following my diagnosis, the MS was relatively benign. I had my usual symptoms of hearing difficulty, seizures, memory loss, etc. But I was able to be physically active and vibrant. Then, one day while I was waiting for a bus, I felt ‘something snap’ in my left leg, and I felt an immediate, sharp agonizing pain. When I boarded the bus, I could barely hoist myself up the platform and sit down. That painful leg spasm was a constant from that day forward for three years. The pain was in a permanent “mode”, and my left leg often felt like a heavy two-by-four. The leg spasm kept my left leg in a bent form. I couldn’t straighten it for the life of me. It was constantly there, and often the pain would escalate into agony.
My second more dramatic symptom to appear following my diagnosis, were facial spasms, or what the medical community calls tardive dyskinesia. The dyskinesia first hit my body while I was taking the bus to visit a friend. The day had been a warm spring day, and my body was having trouble with keeping my internal body temperature stable. I felt like I was being roasted alive. I disembarked from the bus, and as I walked towards a local coffee shop, I felt my face ‘unfold’. Each facial muscle- and there are many of them - clenched and relaxed at their own pace, intensity and rhythm - basically causing me to look like a dying fish. My eyelids wouldn’t relax and kept squeezing erratically and out of control. I couldn’t keep my eyes open for any measurable length of time. My eyes would shut so tightly that I was frightened I wouldn’t be able to open them long enough to see. Then, the facial movements escalated. I was absolutely aghast when my whole face and upper chest began to spasm out of control, in and out, in and out. I began to hyperventilate and my one primary thought was to escape my body. ‘Please dear God, make this stop!! I look like a dying fish!!.’ I had absolutely no control over my facial muscles! They had a life of their own.
The stares... people were startled and looked at me like I was alien. Heck, I didn’t blame them. I was freaked out as well, and felt myself mentally “separate” from the body - almost like shock mode. I was too frightened by this symptom to truly really care. I had no clue what this new symptom was, and why my body was acting in such a way. A few people looked at me with compassion, and a lady asked, “Do you have MS dear?” I was able to muster up a nod and she confirmed a friend of hers had experienced a similar symptom. I immediately took a trip to my neurologist (neuro) the next day. My exhausted face had been in spasm all through the night and I was entering my 30th hour of facial contractions. Every muscle felt like it had been stretched to the far ends of the earth.
What picked me was that the neurologist seemed undisturbed by this symptom, and seemed more intrigued with the symptom. “May I film you?” he shyly asked. I could sense his excitement, as if he was a child being offered a lollipop. Too bad I wasn’t getting as aroused - or even paid for this. I shrugged - I just wanted the face to quite down. I couldn’t organize my mouth to form a word, and replied with a nod. The spasms were so overpowering, that I found myself hyperventilating and gasping for air. Monosyllables were all I could muster, with squeaky weak gasps for air.
Following the filming, the neuro prescribed a muscle relaxant and sent me on my way. I had played the role of a guinea pig, and now what? The tardive dyskinesia occurred 3 more times, and the third time I simply decided to try and end my life. I was so distraught over this disfiguring symptom... but that’s another story.
During the first 6 months of the left leg spasm making its appearance, I continued to walk on a daily basis. Using a cane, I would drag my body to the Vancouver City beach, and force my way around the park area, through Lost Lagoon, and back down to the bus station. I was horrified to notice my body worsening on a daily basis, no matter my enormous efforts. The frightening aspect of it was that I didn’t have any idea what to expect. It was a good thing I didn’t.
My first full-blown MS attack, which lasted from May 2003 to May 2005, occurred a few months after the facial spasm experience. The attack was fierce, and a compilation of symptoms that each had there own degree of intensity and rate. Some were constant, and others were erratic or sudden. The overall ‘sick and physically exhausted, weak and bruised feeling’ was constant. Nocturnal grand mal seizures continued on, and some would last over 20 minutes. The reduced memory, to cognition disturbances such as reduced stress tolerance (I panicked over little things) had me frantic. The hypersensitivity to all types of sensory stimulation such as light, sound, temperature, touch, even air movement or vibration made my life a living torture.
Pains would occur anywhere on my sore body, and the variety of sensations of both pain, numbness, itching, excessive ‘heat’, excessive ‘cold’, hypersensitivity to all bodily and even sensory perceptions occupied my every second of existence. Undulating pain would be particularly disturbing, because I would ‘know’ what I was in for. I would periodically have waves of pain that would build up throughout the body, and then surge into one enormous energy ball. This ball would let loose in internal explosion that painfully shot out of my limbs, the top of my head, or my eyeballs.
The loud sharp pains were frightening and often had me moaning or yelping in pain. The pain jabs would attack me at random, day or night, awake or asleep. The jabs were erratic and sadistic in their intensity. My body would respond with a shiver. A moan or yelp was often my unconscious response. Friends would note my moans, and I had limited realization that I was in that much pain.
Quite often, I would wake up in the morning and feel like someone had pulled my eyeballs out of their sockets, pulling and stretching my optic nerve like an elastic band, and then simply “letting go”. The optic nerves would feel like two hot sore prongs. Unable to open my eyes without tears welling up, and unable to read from blurry vision, I would sometimes sit for hours with my eyes closed, trying to give them a rest. Gawd, there were times I could barely open my eyes, and the ongoing issue with ‘runny eyes’ interfered with any decent eye makeup. Tragedy.
During my attack, particularly the first year, I prayed for a decent two-hour sleep. I became a member of the ‘Insomniac Group’ on an overnight MS chatline. Decent sleep became an exhaustive rarity. The pain sensation in my thighs felt like some sick old man squeezing my left thigh with a pair of giant rusty pliers. Some leg pains felt like some sicko was standing below me, and hitting a giant rusty nail on the bottom of my foot with a huge mallet. Apparently, these intense shocks that course at lightening speed from the soles of my feet to anywhere on my skull are spasm pains. The pain exited through the skull, particularly through the eyes and muscles surrounding the mouth. Some pains would simply be there, overwhelming, irritating and constant.
The act of urination and defecation became a painful and slow process during my attack. The constant urinary urgency had me running to the bathroom, desperately trying to keep the flow of pee from soiling my underwear. Urine is so difficult to remove from some of the white underwear I own. The bladder muscle pain would often keep me up all night long for days at a time. A full bladder and a constipated bowel were both horrendously painful in the pelvic area, and the urgency disabling. A number of times I had to urinate in a public garbage bin, and once I had to defecate in public behind a bush.
The bladder pain itself would translate to my forearms. I found this symptom odd, until my massage therapist explained that my left psoas nerve was passing the pain signals to an easier outlet - my forearms. I would quite often feel the familiar and sharp pain in my forearms, and then realize like an afterthought that my bladder was calling. The number of times I would hobble to the toilet, moaning with arms outstretched in pain.
Urinary and intestinal constipation were my constant obsession. The amount of time I spent on the throne, massaging my lower abdomen or pressing on the bladder muscle. Frequently, I would wait 5-10 minutes to get the bladder going. A friend of mine even commented I had become ‘bowel obsessed’. Sometimes five days would pass without a proper bowel movement. In desperation I turned to the use of enemas, 3 times a week. At the age of 37, I owned 2 enema bags. I could not help but be preoccupied with this symptom.
Constant symptoms were my prolapsed left foot, two left toes that had no tone or resistance to movement - I called them my playdough toes - poor balance, poor coordination, poor vision, poor hearing (particularly the right ear), and poor swallowing. During my first MS attack, I would be choking on every particle of food and miss-swallowing my drink or even the flow of everyday saliva. Fluids and particles would end up aspirating from the esophagus to the trachea, and I would end up choking and coughing until I was blue in the face.
The muscle atrophy was visible, and as a friend pointed out, I looked frail, particularly on my 'bad left side'. For two solid years, I declined daily. I declined to the point of being unable to walk and I declined to the point that I was spending most of the day, propped up with pillows in my bed. At its worst, I could barely crawl to the bathroom. Even the task of brushing my teeth was an event. The number of times I injured my poor gums attempting to simply move the toothbrush with my hand from left to right. Both hands began to tremor whenever I would try to ‘refine my hand movements’ and simply brush my teeth. There were moments, at its worst, that I simply gave up brushing and crawled back to bed. How I loathed my pain ridden body.
As I mentioned before, suicide was attempted in the fifth month of my dreadful attack. A picture of Krsna on my hovel wall (living in a 250-square-foot filthy room/closet can only be termed a hovel) scared me from the consequences of popping the 100+ pills of phenobarbital. I decided that I would let God take over, and if he wanted to save me, so be it. At that point, I really couldn’t care less about it, and just left it in Krsna’s/God’s hands. Calling 911, I simply stated “You can go ahead and save me if you want. I just took a bottle of pills”. No sooner than I gave my address, I passed into oblivion. What seemed like seconds later, I woke up to find my hands tied down to a hospital bed, and a tracheal tube stuck way down my throat. Gawd, I’m still here?!! Damn, I couldn’t even manage this one! Gagging and choking on this tube, I managed to jimmy my shoulder – I'm flexible when need be - and pulled the hard plastic tube out of my throat. The rough edges of the tube hurt like hell, but I couldn’t care less. I needed to breathe! Meanwhile, nursing staff came hollering and rushing to my bed, trying to keep me from moving. I beat them to it. When staff realized that I was awake and functioning, they untied my arms and let me alone.
I often joked with friends and suggested that we agree to pay large sums of money to unsuspecting women, let them experience the ‘ joy’ of an MS body, with all of its ‘uniqueness’. We would borrow their bodies for a day. Maybe even steal them. To even experience the joy and freedom of walking again. I hung onto this hope, even at my lowest.
A symptom which carries through to this day is a hunching and contraction of my shoulder muscles. When I walk, I have difficulty relaxing them. My left shoulder also has a tendency to be higher than the right one. Particularly devastatingly embarrassing symptom are my facial spasms, and thankfully that symptom hasn’t re-occurred since my remission began in May 2006. Stress, low blood sugar, and fatigue would set off the facial spasms. These spasms were painful and exhausting and occupied my brain sufficiently enough to prevent me from dying of embarrassment. I looked like a dying fish gasping for air.
Lack of sensation. During my attack, my hands and feet were numb and every surface area I touched felt the same - an irritating ‘sameness’ in the quality of sensation - everything I touched felt like loose sand. That symptom remains, but in a less noticeable form. A year ago, I had no sensation on the balls of my feet or even in my underarms. In the past year of remission, a limited sensation response has returned, and I feel some sensation on my feet and underarms.
Last May 2006 I found myself in the Emergency Room at the local hospital. The pain in my abdomen was an 8 out of 10 on the pain scale, and was mounting in intensity until at one point, I was vomiting at 5-second intervals. The first emergency visit, I was sent home with a pat on the head. The second time, 12 hours later, I was worse and required a morphine pill. I thought I would explode!! I knew that my bowels were the issue, as several home enemas produced little. I hadn’t defecated in 5 days, and I didn’t have money for a taxi, so transit was my only option. I boarded the bus in my powerchair, doubled over in pain. As soon as the bus driver buckled me in, I heaved 15 times in a row. Lucky for all, I hadn’t been able to eat much in the last 24 hours. The bus driver was beside himself, jumping up and down like a monkey, trying to deal with the unfolding event. But I was in so much pain I couldn’t care less. I was absolutely paralyzed with pain. I couldn’t even operate the hand toggle switch on my powerchair. Screaming at the grumbling passengers to disembark, the bus driver had a supervisor drive me personally to the Burnaby hospital. My limousine was an empty city bus, with the smell of vomit lingering sharply in the air. Somehow emergency hospital staff, eager to participate in the unfolding event, managed to move my powerchair, with me in it. I was slumped over, paralyzed with pain. I gasped for the staff to call Alex, and he arrived soon afterward. I was at a level that I was screaming. Morphine was administered without question when an emergency x-ray revealed an impacted bowel. I spent the night in the emergency ward slumped over on a commode sprayed with my feces, commenting to Alex that this was the most humiliating experience. Four fleet enemas had literally sprayed brown fluid everywhere in my ‘area’ of the emergency ward. Thank God for curtains. I felt sorry for anyone who would have to clean up the stinky mess I had made. The enemas didn’t work to move my impaction, so citromag was administered to me. Bravo! It worked! Alex gave me a kind smile, and looking at me with those eyes of his. He shrugged and commented softly “Shit happens”. No kidding! I managed a small laugh.
The primary singular motive in following my gluten-free diet was fueled by this entire horrific experience. When I asked my emerg doctor if this could happen to me again, his response was that “Lots of MS patients come in with impacted bowels”. What!? I was horrified. My response was “Dr, I will do anything to stop this from ever happening again!” His response was a resigned shrug. He commented “Avoid gluten, anything with wheat in it”. He had no idea how that response transformed my life.
That very night, I vowed to avoid any such experience again. My slow march to wellness began. Unexpectedly, a full three weeks after commencing the gluten-free diet, I woke up one morning flabbergasted. “Alex, my leg spasm is gone!” I couldn’t believe it! Initially, I was terrified to expect this relief to last. I thought this spasm relief would be temporary, a flicker of time that would tease me into hoping again. I was so terrified, that I prayed the relief wouldn’t last too long. I didn’t want to be disappointed. I didn’t want to be fooled. The idea of a connection between pain relief and diet didn’t occur to me.
One month passed, then two, three, four, five... It has been a full two years that I’ve followed a gluten-free diet and the left leg spasm has not returned. With the ongoing issues of pain and difficulty mobilizing and with other MS symptoms, I know that I am not cured. However, I have been healing slowly from my MS attack - on a daily basis. The unexpected effect of the gluten free diet on my physical health has me convinced that the gluten-free diet is the answer to neurological healing and reduction of MS symptoms. Needless to say, I have yet to experience another bowel impaction, and my intestines are happy, happy, happy! I no longer dread the bathroom sessions.
One note: This past year and a half has been a difficult, often a very painful experience. During these past two years of remission, the pain, frustration and healing have all had their challenges. Even within witnessing and experiencing the joy of improved body function, I experience a bitterness of having only experienced healing part way. What was dramatic to me was how obvious the neurological nerve damage was on my left side. It was as if I had been hit by a bus! The nerve damage felt like patches of clinging moss, holding onto my body surface, growing outward, and with highly ‘fried’ moss leaves or tendrils extending outward. I could actually feel and visualize the fried tendrils.
These tendrils felt like they were on fire and vibrating independently at warp speed. Any time I passed by a moving object, particularly a moving human body, the heat and energy from that passing body would assault me. The more intense pain was felt on the surface of the skin, where the nerve damage seemed to be particularly concentrated. The subsequent surge of pain would assault my poor body, and often I felt my body shake and tremble. Whenever I ventured outside for a walk, I still find I have to prepare myself mentally. It’s as if I am preparing for a run or a hike on the Grouse Grind. Quite often, I have to bargain with myself and convince myself that the effort is worth it. The first seven months of remission, I was hollering in fear and pain at others to step aside. My additional worry was that the pain would totally distract me from the ‘action of walking’, and like a marionette doll, I would lose my balance and fall. My other fear was ending up in the path of oncoming vehicular or foot traffic.
Here is my trip from the second year of my first MS attack to and through my remission (2004-2008)...
to be continued ...
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