I always travelled by bike everywhere. I enjoyed concerts, being politically active, camping, dance, gymnastics, my work, playing guitar, painting, cooking. I was the only kid in my whole public school that got the ‘Award of Excellence’ for physical fitness.
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 although it didn’t hinder me that much with my activities.
Upon my return to Canada, I had my amalgams removed by SW who did not use any precautions, and had me swallowing and spitting out hunks of mercury fillings when he was done. He now denies I was ever his patient. I have only received one vaccination past age 10 – for meningitis – forced upon me at school when I was 19. I believe all the above came together to burden my immune system, setting the stage for what was about to appear …
On New Year’s Eve, 1997 I was in NYC eating Indian Food at some joint on Lexington. I looked up from my plate and suddenly felt very ill. I went back to Tom’s apartment. I had the flu. However, I sensed it was somehow different. It turns out it was, as it never resolved. I was 26 years old.
Within the year I was diagnosed with Myalgic Encephalomyelitis/CFS (ICD 93.3) about 3 times over. Within 5 months I became unable to work as co-owner of Canada’s largest health food co-operative, nutritional consultant/herbalist, and had to give up my seat on the board of directors. I just didn’t have the stamina or energy, though I felt ‘wired’ all the time. I left confidential papers lying around the store. I turned clumsy and fell down the steps of the subway and showed up at doctors’ appointments on the wrong day. In 2001, I lost my father, my home, my insurance income, my cat, my vehicle – all within weeks, but I remained stable, functioning at about a 5/10.
I did not want to be back living with my mother, and I wanted to pursue my spiritual path in a more focused way so 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, but I was still 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. I was stubborn and didn’t want to hear it. I was undergoing immense stress from just trying to cope enough to stay.
Some of us, including myself, came down with a wicked flu. After this flu my neurological problems started happening in a severe way with increased sensitivity to noise, 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 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). 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. Within the year I became paralyzed.
I have 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. For a few years after diagnosis, I was moderately ill, and unable to work but able to go to restorative yoga, drive, take a few vacations, go for short walks and take care of myself. I did all the right things and yet things went downhill. At my very worst, I was totally paralyzed for 8 months, 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 a wonderful dream compared to mine.
I remember trying to look at the clock beside my head, trying 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 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. Just trying to turn my head slightly on the pillow caused horrendous crashes. I could feel myself drifting away, dissolving into the ether.
I wasn’t able to have my hair washed anymore in the bed sink; nor was I able to tolerate having bedsheets or my top changed. My mum yelled at me because I stunk. She 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. 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 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. 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 down my throat and land on the commode.
In 2005 some grace entered my life. I was put in hospital, treated for a bladder infection with Macrobid and somehow I stopped crashing. I was relieved to be away from my mother, who was not coping as my caregiver. 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.
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 hours of the day in bed. 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 and my physician there didn’t believe that ME/CFS existed.
The psychiatric doctor from the previous hospital was not helpful. 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 hour a day I would sit in the wheelchair.
One day, some installments and major cleaning were being 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 patient support workers not to feed me or brush my teeth. I just had to force myself to do it. Politics played in here, as she let it slip that she couldn’t get the Patient Support Workers (PSWs) to do certain tasks, so I’d just have to do them myself. Finally, when my Care Manager was away on holiday, my friends spoke to her replacement and she 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 for residents awaiting transfer to nursing homes. I was the youngest one 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, yawl just going to nursing homes, nobody cares about you. It’s not like the rehab floor where you have a chance to be somebody.’ 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. My adrenals were totally exhausted.
In November 2006, I left 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, if not to stay then 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 understand 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 2005. Now it is 2011. On good days, I can use the computer, read, 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 during the day and diapers at night. 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. On bad days, I can’t roll over in bed or speak.
I have caregivers through an agency, although 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. 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. Until then, thank you for reading the first draft.
[Ed. Note: I have no update and although Liisa gave permission to publish her whole name, I have eliminated it until I hear from her. ln]