I was finally diagnosed with CFS/ME, after almost 5 years of being very ill all the time and not knowing why.
I had to go on long-term disability insurance (LTD) 2 years ago. I have since done extensive research into this disease and realized how incredibly serious this disease is.
I am astounded and very disappointed that our Canadian medical system has been so short-sighted in recognizing this disease and collaborating with the researchers in the United States and elsewhere that have already achieved great advances in understanding this disease.
There seems to be very conclusive evidence that this is a mitochondria dysfunction disease that does not allow our bodies to convert the food we eat into the energy our bodies need to function. It seems this happens most often after a serious flu or virus, which is what I experienced.
Because of the limited understanding and scepticism of the medical professionals we rely on to diagnose, I was considered to have a sleep problem for which I should recover from?
The LTDI insurer ordered me to do water physio three times a week and see a Psychologist once a week (this was after their own Psychiatrist advised them that I had no Psychiatric issues and just needed to sleep).
Fortunately for me, the Physiotherapist in charge of my water therapy listened to me when I told him that any exercise or just simple things like walking from the bedroom to the kitchen made me weaker. He measured my muscle strength throughout my entire body before I started the physio and advised me that where in most cases I should be exerting a pressure of “60”, I was exerting a pressure of “6”. He then measured again after two weeks of exercise and found that most of those measurements became even lower.
I pleaded with the insurance company to stop this process and they were refusing until both the physiotherapist and the Psychologist both advised my insurance company in writing that I should stop the physio and the counselling as they were making my health worse.
Because they found I had severe sleep apnea, the insurer assumed that was the end of the story and I would be well again. Unfortunately, the sleep specialist had to show that even with a CPAP machine my condition would not improve, which required me to adjust to a CPAP machine which took about a year and then do another sleep test. It was after the second sleep test that the diagnosis of Chronic Fatigue Syndrome was made.
The whole last 5 years I have been telling doctors that I am weak all the time, don’t sleep, feel worse after exertion of any kind and a myriad of other changes and symptoms, yet it took 5 years and many judgemental people (non believers in the existence of Chronic Fatigue Syndrome), before I received a diagnosis. I am still having to deal with case managers at my insurance company that you get a sense they don’t believe your diagnosis. What a deplorable system.
I nearly lost my marriage of over 40 years and am now almost always housebound. Though I may sound angry here, I am hopeful and try every day to maintain some form of a normal life. I have learned to call a good day when I have enough energy to have a shower and cook a couple meals or do the dishes. I am fortunate to have a spouse that is now retired and supports me. I am also fortunate to have a LTDI plan that supports me so far.
The worst part of this disease is dealing with the severely debilitating weakness and the frustration and anxiety of dealing with all of the disbelievers in the medical system and general public who still believe in Canada that this is more of a psychiatric issue than a real medical state of complete systemic disfunction.
I am grateful to people, such as yourself, who are out there advocating for education.