• Priya - ME/CFS Hospitalization Story

    I was admitted to Scarborough General Hospital in 2005 as a totally bedridden 33-year-old woman with ME/CFS when things got too rough for my mum and she was worried that I was deteriorating. I had been paralyzed for 8 months, and was unable to speak. I did quite well there, as I was in the ‘Acute Care for the Elderly/Neurology’ unit - a pretty low-key place with lots of care. Folks averaging 90 years of age recovering from strokes were my main companions, and they were operating at just about my speed. Amazingly, no PSWs were allowed to work on the unit. (PSWs are health care aides that can get their designation with a 6-week course and an IQ of about 85, and they are taking over most of the hands-on patient care in Ontario hospitals.) I experienced a miracle of sorts, maybe from the decreased stresses of living with my mum as my main caregiver (who was not coping), or maybe from having a long standing UTI treated, I'm not really sure. Somehow, my paralysis faded and my speech slowly returned. I had the strength to feed myself after about a week, though needed a soft food diet, and someone to open lids for me. I still couldn't read, watch tv or listen to music; these issues would last years, but I definitely was improving. I had my first shower in years and eventually became able to brush my own teeth. After about 2 months, I relearned how to walk at SGH (up to 116 ft/day, once a day), and my rehab was progressing very slowly, but steadily. Then, government guidelines dictated that I be moved to a Rehab Hospital. I had a very difficult time getting accepted to one because there were days on record where I was too ill to participate in physical therapy, which was not acceptable for someone deemed as a psychiatric patient with no medical illness, thanks to a crackerjack psychiatrist who ‘diagnosed’ me a few months out of medical school with six psychiatric diagnoses. He decided that I may have had ME in the past, but that now I had somatization disorder.

    Finally, I got accepted to Bridgepoint Health. My preconceived ideas of what Rehab Hospital was all about caused me to feel like I’d just won the Lotto Super7. When I got there, I had my first major relapse within 2 weeks due to overexertion. My doctor (the Chief of Staff) maintained that ME/CFS probably doesn’t exist as an illness as he’d never seen a case (note: as of 2006, it is illegal to hold this opinion in Ontario as a doctor). I relapsed severely a few months later from hospital chemical exposure from the cleansers they used August 1, 2005 for spring cleaning. To show the house-cleaning ethos at Bridgepoint, I introduce Joe, the cleaner on the unit who’d come to work at 7AM singing opera at the top of his lungs. He used to spray about 50-100 squirts of ‘pink stuff’ onto everything in the room to clean it. One day, a woman was there to clean instead of Joe; I noticed that she sprayed 3 squirts of ‘pink stuff’ into a large bucket-full of water and used that to clean the entire room. I asked why she did it like that and told her about Joe’s method. She got very nervous about this information and promptly left. So, I’m not too surprised that 5 kids super-cleaning my room with God-knows-what left me paralyzed, unable to feed myself, brush my teeth, wash my face or speak. I rallied a bit for a few months, unable to walk my usual 24 meters per day, but able to stand at times, transfer and be taken for showers on the commode. But, for all intents and purposes I’ve never really walked since. The doctor maintained that I didn’t walk because I didn’t want to and the patient care manager told me I’d have to force myself to do my own feeding and tooth-brushing because the ‘PSWs were not intelligent enough to understand why I needed help with those tasks’. They had her whipped was the real truth. So, even though I was paying for my stay at this point, my mother had to come in every lunch and dinner to feed me and do my personal care. Finally when the manager was on vacation, my friends went to her replacement to discuss the issue; she put her foot down, making the PSWs give me the care I needed from that point forward.

    Then, I got the privilege of being the youngest person ever to be transferred to the 6th floor: the purgatory for people awaiting nursing home placement. One woman was screaming ‘mama!’ 24/7, patients would wander into my room to either take my things, ask me to marry them or try to force feed me cheese. Staff on 6E dubbed the unit the ‘Zoo’. It was routine for PSWs to treat these elderly patients as non-entities: they would come into our room at night to party, talk on cell phones and sometimes even physically or mentally abuse those residents who would be unable to report them. I became chronically sleep deprived. One day, I recognized PSW Cavell from the night shift when her gossiping had kept me awake until 7 AM. I asked her why she didn’t let us sleep at night. Her reply, “Life’s a killer, baby. Oh you’re so pretty, it’s so sad. Nobody cares about these people [sweeping hand gesture], they’re all just going to nursing homes.” So, from this honest, narcissistic sociopath I had my answer. I complained to management, who told me she’d talk to the head night nurse Suzanne, which didn’t do a lick of good as she was one of the worst offenders. I continued to deteriorate and by November 2006, I felt I was dissolving into the ether. I left the hospital in an ambulance without being discharged to save my life. I have still not recovered from the relapse this had caused even though it’s been 6 years. I relapsed again upon my LTC (long-term-care, ie - nursing home) stay in 2008, experiencing transient paralysis and losing my ability to talk for several months.

    This is my hospital horror story, though there are many more of us with them. A 30-year-old woman named Emily Collingridge is another ME/CFS patient who told me she relapsed severely after a previous hospital visit. I recently discovered that Emily died this past Sunday, March 18, 2012 in hospital. For me this was a call to action: too many ME/CFS patients die or relapse from not having a appropriate hospital care that accommodates their very unique needs. Too many refuse hospitalization for this reason, and end up dying or relapsing at home because they can’t tolerate getting the care they need in a hospital setting. Conversely, others go to hospital and end up dying or relapsing from the care they receive. I believe the four previous publicized ME/CFS deaths in UK were due to starvation, malnutrition and/or dehydration as these patients were unable to chew or swallow. A hospital visit done right could have given them nourishment through inserting a gastric tube.

    This is why I’m petitioning for a small dedicated care unit for ME/CFS in one Toronto Hospital where ME/CFS patients can safely go when they need hospitalization, LTC or respite for themselves or caregivers. The petition has been posted on this site under the appropriate forum. Please sign and share so that what happened to me doesn't happen to anyone else.