Driving research of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS),
Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia and Long Covid

I Always Traveled by Bike

typewriterI ALWAYS TRAVELED BY BIKE. Everywhere, in every season. I enjoyed concerts, being politically active, camping, dance, hiking, canoeing, traveling, gymnastics, my work, playing guitar, painting, cooking and just hanging out with my friends. I was the only kid in my whole public school of 500 that got the “Award of Excellence” for physical fitness. My gramma never used to say much to me growing up, but the one thing she remarked upon repeatedly was how strong I was. Whatever issues I had, I always believed nothing could touch my health.

I have only received one vaccination past age 10 — for meningitis –forced upon me at school when I was 19. I instinctively did not want it, but my art teacher dragged me to the cafeteria believing she was doing me a favour. After a lot off fuss I got the jab. Hey, I’m not an anti-vaxer, but I am pro- informed consent and choice: I’d been given neither the choice nor the information about the vaccine to make an informed choice. The result was an allergy to dairy that gave me fevers for years before being diagnosed as such. That was the first chip at my immune system.

I have a history of travel in India, South America, North America, Europe and the Caribbean. In India 1996, I came down with an un-diagnosed malaria-like illness, gastroenteritis and four flus. I think this set the stage for decreased immunity and gut problems, though it didn’t hinder me that much from my activities and I soon bounced back. More or less.

Upon my return to Canada, I had four amalgams removed and replaced with composite ones. I asked Dr. SW to use a dam, yet he said, A) that my mouth was too small, and B) that they were unnecessary as long as the hygienist did her job properly suctioning the amalgam up as he drilled it away. I was young and thought he knew best so we went ahead with the procedure, even though everyone now knows that this method was bullshit on many levels. They wore masks while I was breathing in vapours the entire time. At the end, I stood up and spat out chunks of amalgam into the sink — chunks that the hygienist was supposed to suction away from my mouth. I also swallowed some inadvertently. I said, “Hey. Look at that!”. The dentist looked in the sink, then turned to his hygienist and said “That’s NOT good”. They promptly left me standing there alone and left the amalgam (which needed to be treated as a biohazard) in their sink to go into Toronto’s municipal water system. When I was well enough I wrote him a letter about this unfortunate incident. In a letter from his legal representative, he denied I was ever his patient.

I believe all the above – the vaccine, the assault to my immune system from India and the mercury assault to my CNS – came together to tip my body burden of toxins from manageable to unmanageable, setting the stage for what was about to appear. My methylation genetics also point to this being the case.

On New Year’s Eve, 1997 I was in NYC eating Indian food at some place on Lexington. I looked up from my plate and suddenly felt very ill. I went back to Tom’s apartment. I had the flu.

Yet, I sensed it was somehow different – not in a fear-based way, but a deeply knowing one. Turns out it was different than the flu as it never resolved. The acute phase would pass and then I would get another respiratory virus. Within two months I’d had five. I kept going to work because staying home wasn’t helping me recover. I was 26 years old, and within the year I was diagnosed with Myalgic Encephalomyelitis/CFS (ICD 10 G93.3) about 3 times over. Within 5 months I became unable to work as a co-owner of Canada’s largest health food co-operative, or as a nutritional consultant/herbalist and had to give up my seat on the board of directors. I just didn’t have the stamina or energy, I was having cognitive problems, had to eat 8 times a day to keep my blood sugar stable and felt “wired” all the time. I left confidential papers lying around the store. I turned clumsy and fell down the steps of the subway because my feet and brain seemed disconnected. I showed up at doctors’ appointments on the wrong day. My friend would call and invite me to the park, which was a few blocks away. I’d accept, yet when I got ready to go out the door I realized I didn’t know how to get there anymore, and I was too ashamed to call my friend to tell her. I became unreliable. I didn’t know what I had, but I prayed it was cancer. I prayed double-hard after my dear gramma announced to me that I had AIDS from “doing ‘grugs’ on Yonge St.” (these are the dangers of someone with limited English watching TV: a veno-phobic health-nut who wasn’t really into any drugs gets turned into a junkie and Ronald Regan is seen as “a good man”. Anyway… By May, 1998 I was officially on sick leave from work. I had collapsed as customers were speaking to me and I went to lay down on the storage room floor realizing I couldn’t understand a word they’d just said to me. My friend drove me home. I went on short-term disability which had it’s attendant appointments with psychologists, physical therapists, 8 hours of neuro-psychological testing and about an hour of physical examination to asses my ability to work.

The doc who performed the latter assessment was a shifty-eyed guy who was more neurotic than Woody Allen. He was also black-listed by the Canadian government and exempt from doing such exams for them as I found out later from my lawyer, who called him “an insurance company whore”. He also plowed down a pedestrian in the court-house parking lot while driving his car in a rush. Anyways, this jerk said I was fine and fit to work. My insurance company (whom I’d dubbed the Un-Cooperators) was working under the premise that I had been sick, but that I was fine now except for the left-over “sickness behaviour” I had acquired out of habit.

GET, CBT and a return-to-work program were ordered by the insurance company and I was to comply if I wanted to keep my monthly disability benefits. I actually did ok until I was working 16 hours a week, at which point I crashed and could no longer go on working at all. At this point, my 6 year legal battle with the insurance company began in order for me to get my LTD benefits back. Eventually I won.

In 2001, I lost my father, my home, my income, my cat, my scooter, my car – all within weeks, but I remained stable, functioning at about a 5/10. I wanted to pursue my spiritual path in a more focused way, and since I no longer had my own home, I signed up for a 6-month stint at a Tibetan Buddhist monastery in Cape Breton, NS. Then 9/11 happened and I started feeling worse for some reason, but I was determined to go … It was perfect and I loved everything about it, though I was having difficulty with the daily schedule. I was told that I should leave to benefit my health. Yet, I was stubborn and didn’t want to hear it, because on another level I’d never been happier or more satisfied with life. I was undergoing immense stress from just trying to cope enough to stay. Some of us, including myself, came down with a wicked flu in the spring. After this flu my neurological problems started happening in a severe way with increased sensitivity to sound, inability to book a hotel room, etc.

Somehow, I made it back to Toronto in 2002 not well at all. I had an MRI: negative for MS. I had an EEG, which caused a seizure and dirty looks from the lab tech, but showed “no epilepsy”. I moved in with my aunt and uncle in the country but got much worse inside of 2 months, I believe, due to the 2 cell phone/radio towers that border their property (I can’t use a cell phone to this day without severe neurological repercussions). I couldn’t speak much; couldn’t listen to speech or music, and started having seizures provoked by overstimulation (e.g. someone whistling, or hearing a radio play). I lived in silence and my aunt and uncle were very accommodating to all this and all the other new symptoms that were popping up — like suddenly becoming unable to walk more than 20 paces. My uncle drove me to Toronto to see my ME specialist in May, where I had a seizure from people talking in the waiting room. I then ended up at my mothers’ by default, bedridden. I tried to walk, but my whole body became spastic. I tried crutches and a wheelchair to get to the bathroom but I kept sliding until I was relegated to bed. Within the year I became paralysed.

I spent 97% of my thirties bed-bound. From my own experience of ME / CFS, I would describe it as feeling like I’ve been hit by a Mac truck, the worst case of the flu, and 20 cups of coffee while having been made to stand for 3 days straight after running a marathon, without being allowed to sleep. The brain stuff I cannot even begin to describe. Where do you go when you’re so sick you need to lie down, but you already are lying down? For a few years after diagnosis I was moderately ill, unable to work but able to go to restorative yoga, drive, take a few vacations, cook, go for short walks and take care of myself. I did all the right things and yet things still went downhill…

At my very worst I was totally paralyzed for 8 months except for swallowing and eyelids, unable to speak or put a few words together in my mind; I couldn’t process any incoming sensory stimulation, so nobody could talk to me. I was in the most unbelievable neurological pain, convincing me that hell realms existed and that I was in one. Opening my eyes to look at a blank wall was impossible. My brain hurt and my body felt crazy, like all the subtle infrastructures suddenly went haywire.

I recalled the story of a guy who took 100 hits of LSD and was tripping for a year. His life sounded like unicorns and rainbows compared to mine.

I remember trying to look at the clock beside my head to take my heart rate for 10 seconds as it echoed in my pillow, but it was impossible. If I ever needed to dial 9-1-1, that also would have been impossible. Liquid food was poured down my throat, running down the sides of my face as I couldn’t use my lips or facial muscles properly to manage a cup or my hands to wipe it up. I was given nutritional IVs, yet they made my blood sugar rise to levels that only diabetics can achieve, and I’m not diabetic. I was constantly fighting to get enough “food” into me to keep my blood sugar from dropping; I knew the strain of hypoglycemia on one so weak was serious: the last time my blood sugar plummeted, the stress caused a huge crash which resulted in my inability to stand up anymore … followed by the paralysis of my legs … followed by the paralysis of my arms and torso.

Just trying to turn my head slightly on the pillow caused horrendous crashes. I could feel myself drifting away, dissolving into the ether. I had to keep consciously deciding to stay. I wasn’t able to have my hair washed anymore in the bed sink, nor was I able to tolerate having the bedsheets or my top changed. I remember wanting a hospital gown so badly to be changed into (I’d finally realized their genius design), and to have the heavy duvet replaced by something lighter as I could barely breathe under it.

My mum yelled at me because I stunk and my carers would plug their noses to indicate it. I knew — I wasn’t an idiot — I just couldn’t tolerate receiving certain care tasks. Having one person in the room with me was very difficult; having them touch or move me was a nightmare. My mum used to throw my 85-lb. body onto the commode beside my bed until a bladder infection relegated me to the bedpan. I motioned to the scissors with my eyes (a major feat) and had my mum cut off my hair, as it was too heavy on my head and caused distress. It was also encrusted with months of smoothies that had missed my mouth. I hoped the OT, nurse or doctor would figure out to flex my feet to avoid the excruciating “foot-drop” that occurs when movement in legs is lost. But they didn’t. They also didn’t inform my mother that I needed “turning” every 1 1/2 hours to avoid extra pain. I had a wash twice a week through CCAC, a community caregiving service. I stunk because I could not wipe myself after using the commode, and I did not want my mother doing it. When I had my period, I just bled onto a “blue pad”, but didn’t receive any extra care to clean me up.

I felt gross in every way imaginable. I waited through unbelievable pain each day for the night, when I might get a short reprieve and sleep. I later found out that my mother and close friends thought I was dying. I felt I was. My quality of life was in the red. It was an effort just to breathe, get food poured down my throat and land on the commode.

In 2005 some grace entered my life. I was put in hospital because my specialist Dr Bested had never had an ME patient become paralyzed and she wanted MS ruled out. It was, though I was treated for a bladder infection with Macrobid and somehow I stopped crashing. This was a miracle. I was also relieved that my mother was getting respite, as she was not coping as my main caregiver. I was happy to wake up each morning to realize I was no longer at her home and my stress was eased. It was a good unit (ACE/neurology) with an all-RN and RPN staff, and mostly stroke patients, so it was usually quiet. I couldn’t quite keep up physically with the 90 year-olds who’d had strokes and were tube-fed, but I was going in the direction of “living”. Slowly I could move my toes and hands, then I was able to get a kleenex out of the box and blow my nose. My speech was weak, but it started to return. I became able to chew certain foods and use a fork. I was taken for a shower via commode, which was pure bliss. After almost 3 months of physiotherapy I was able to walk up to 24 meters once a day (on a good day) with a walker if I spent at least 20-22 hours of the day in bed. I had PEM, but I wasn’t crashing. Two dudes even tried to pick me up while I was there, and I’m quite sure wanted to ask my hand in marriage. It was incredible to stand after all those months of paralysis and feel every muscle, tendon, ligament, nerve so acutely. I was still unable to read, write, listen to music or watch TV, but the doctors were concerned only with my inability to walk.

I was transferred to a rehab hospital (big mistake, but the “rules” required it), and started going downhill because I was ashamed to ask for help when I needed it. Also, my physician there didn’t believe that ME / CFS existed, and it was 1 year prior to the province declaring such behaviour as illegal. Everyone who didn’t know me thought I was lazy and choosing to ruin my life by not being able to get out of bed except for the 1-2 hours a day I could sit in the wheelchair or walk. The nurses would look at me and ask, “What’s your problem? You should be watching American Idol and going on dates with rich men in convertibles who buy you diamonds and have babies with you”. Jesus, they didn’t know me at all. And, were apparently sociopathic narcissists. I was working with what I’d been given, and that’s what was important to me, not some chick called Beyoncé I’d have to hear about through 3 other people’s TV sets, blaring at all hours.

One day, some installments and major cleaning were done in my hospital room leaving it with an unusual and extremely strong chemical smell. This VOC exposure caused a major crash, leaving me unable to feed myself, brush my teeth, stand, walk or talk. I was devastated. Yet, the doctor told me I didn’t walk because I didn’t want to. The Patient Care Manager forced “tough love” on me, telling the PSWs not to feed me or brush my teeth; that I just had to force myself to do it because “people with arthritis do it”. Politics played in here as she let it slip that the she couldn’t get the PSWs to do certain tasks because they weren’t very “educated”, so I’d “just have to do them myself”. Finally, when my Patient Care Manager was away on holiday, my friends spoke to her replacement who promptly demanded the PSWs help me with tasks I could not do myself from that day forward.

They eventually moved me to the Long Term Care floor of the hospital which was for residents awaiting transfer to nursing homes. I was the youngest one there in the history of that unit at age 34. Here, the PSWs would not let me sleep, as they owned the rooms and saw fit to party, gossip and use their cell phones in them all night long. In the morning, I recognized one who was whooping it up in my room the night before and asked her why she wouldn’t let me sleep. Her response: “Life’s a killer, baby. These people, y’all just going to nursing homes, nobody cares about you. It’s not like the rehab floor where you have a chance to be somebody. And why were you telling me to be quiet last night anyways?” I complained to my manager who said she’s speak to the night RN, but the night RN was part of the problem and pretty much set the ethos for PSWs to follow, which was basically “do whatever you want, abuse the patients if they can’t speak out and please don’t let them ruin your good time”. Holy shit. After the myriad stresses of 20 months in the hospital, the stress of not being allowed to sleep was too much. I did not have the energy to even receive a wash.

In November 2006, I left abruptly in an ambulance without being discharged to save my life, once again ending up at my mum’s. The hospital kept calling, asking my mum to bring me back, at least so they could discharge me. They just didn’t get it. If I had to be moved one more time in that shape, that would’ve been the end of me. Bureaucracy always trumps patient well-being in the health care system, so I understand their efforts at trying. Too bad they didn’t get why I refused.

I have recovered some, but at a pathologically slow pace, encountering many set-backs. I have not been able to stand up or sit up independently since that brief period in 2005. For all intents and purposes, it’s really been since May, 2003. Now it is 2013.

On good days, I can use the computer, read, whisper, make bracelets, watch a film, meditate, chew certain soft foods and feed myself. Sometimes I can brush my own teeth, which is a pleasure I cannot even begin to describe.

I use the bedpan. I still cannot sit up independently, stand up or walk. I can’t tolerate movement, so I’m not able to be transferred into a wheelchair, or to go outside. I’ve gone out once this past year, and it was heavily drugged via ambulance. On bad days, I can’t roll over in bed, move or speak. I have caregivers through an agency, though find many of them lacking the necessary skills to take care of people in my situation. The system doesn’t have the money to pay for workers with skills. But, I’m very clean and have devised a way to wash my hair while sitting up in my hospital bed. Even though some PSWs don’t know the difference between a candle or a teapot, try to use boiling hot water for enemas, don’t know how to use the bed-controller or know how to close blinds (no joke) my overall care is much better and more frequent at 17 hours a week. My mum, friends and relatives pick up the rest of the slack (tenuously) and I just hired a chef to make meals for the week (mum can’t manage this anymore) which I’m trying to do again in a non-cost prohibitive way. Meanwhile I keep trying every remotely feasible new therapy while putting all effort into staying out of institutionalized care. I’m not at all down with nursing homes, which I’ve dubbed “living morgues” … besides, after I told them all my needs, they kicked me off their waiting lists.

Where to keep your body is a major challenge when you’re severely ill and can’t tolerate much. Not sick enough for acute care hospitals, too sick for nursing homes or rehab, sometimes to ill to be at home with care, too ill to be in an independent living facility (besides, the wait-list is “40 years long” according to CCAC), and I don’t have cancer or AIDS so hospice is out. I asked Dr Bested what people like us do when we have no place to go. Her best recommendation was to live in a car or a women’s shelter, neither of which are feasible when you can’t sit up on your own and she knew it. She knows there is no place for us.

It is a job in itself being very severely ill and having to fight the system for the basics of care at every turn. One day I will write my story the way I want to; these are just skeletal facts, there’s no meat here, no spirit, no paradox, no depth, not much of “me”. It’s emotionally taxing, yet cathartic to get even this much out. This is just a dip into my experience. Baby steps. Besides, I type with the rubber end of a tincture bottle. It’s gonna take awhile.

ps- i wrote this years ago + an update is necessary, but it’ll have to wait. now living alone after becoming homeless + hospitalized for 7 weeks, flying on donations with my care severely jeopardized.

Liisa Priyanka Lugus
CANADA

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

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