When I look back on my life, with the knowledge & medical diagnosis that I now have, a lot of things make sense. I can say ‘Now I understand why’.
In 1997, at age 38, I was single & 4 years into a physically & mentally demanding career. In my effort to stay at work, I was having regular trigger point massage therapy to keep head & back aches manageable. I had also started wearing orthotics to correct a congenital foot defect that, I was told, was causing me to burn more energy than the average person every time I took a step.
Even with the massage & orthotics, I started to experience increasing episodes of fatigue unrelieved by sleep, multiple throat illnesses, head/back/body pain, until my body shut me down in Jan 1998. I ‘crashed’. I ‘hit the wall’. I felt & looked, like an exhausted marathon runner looks when they collapse, unable to move another step. A local physiotherapist tested for lactate while I was on a treadmill. He was surprised at my very high levels at low heart rates. He then used the same treatment he would recommend for a high level athlete who had overtrained, to reduce those levels. Unfortunately for me I never fully recovered & after one effort to return to work, had to stop working in March 1998.
I was eventually told by 3 different specialists that I “presented with CFS”. I refused to accept it My understanding & the main implication from a 1994 CFS reference book, was that CFS was primarily a psychological illness. How could a mental illness explain my leg weakness, my shortness of breath, my body aches & pains? I knew what depression was & this wasn’t it! I wanted to carry on with my life, my home renovations, my sports & my career. I didn’t want to be lying on a couch all day. I didn’t want my goals for the day to only be – get up, feed myself, make my bed & lay back down. There had to be something else wrong with me. No way was it CFS!
It didn’t help me accept that I had CFS, when in early 1998, while I was waiting for an explanation for my extreme exhaustion, a paternal first cousin got tired of waiting for medical help for her own exhaustion. After suffering with CFS for 15 years, she carefully wrapped up her affairs & took her own life. Was this my future if I accepted the CFS diagnosis? Not if I could help it! Denial is a wonderful thing sometimes.
With the help of a nutritionist- who explained that healthy calorie intake must match physical output & that yes I did need water, fat, salt & minerals in my diet & the ongoing help of the physiotherapist, I eventually returned to work after approximately 10 months off. I was assigned a different position to assist with my continuing fatigue & cognitive issues. My life consisted of eat, sleep, go to work, repeat. No more volunteering, no sports, no home renovations, no yard work. I made it work. I had to. I didn’t want to lose my home.
The next help came from a naturopath who prescribed thyroid (T3+T4), adrenal & mineral supplements. They helped enough to give me a bit of a life outside work. Thus with a healthy diet, supplements, pacing/rest & a new husband, life was pretty good. Every aspect of that life revolved around me getting enough rest to return to work but it was what we knew as our normal.
Then came the year 2010, when I thought it was time to lose weight & get in shape. Biggest mistake of my life. The symptoms that had caused my crash in 1998 returned. Starting with left leg weakness, back & head pain & ending months later with brain fog, dyslexia, stammering & word loss. I went off work in March 2011, never to return.
I had to see numerous specialists, (again). Most with no idea what was wrong with me but assurances that it wasn’t MS or Thyroid or Adrenal or Cardiac or Pulmonary or…..No diagnosis, no money thus my disability benefits were cut off. The only diagnosis, in early 2012, was somatoform disorder with a possible depressive episode & anxiety. I didn’t agree with anything but the anxiety but agreed to try medication. Two drugs & many months later, after not being able to tolerate either drug at proper dosage, I informed my doctor that I wanted to stop taking the pills due to their side effects. I no longer knew if my fatigue was due to my body or the drugs. We monitored my coming off the medication & determined that it had been contributing to my fatigue.
In mid 2012, I learned that my left leg weakness was another congenital defect. This time with the L5/S1 transverse processes. There is no cure but after a visit to a pain clinic, a recommendation of the Complex Chronic Disease Clinic application triage group in early 2013, I now receive facet joint injections a few times a year. My left leg works & the pain is greatly reduced.
In mid 2013, I saw a doctor who specializes in ME/FM. He officially diagnosed me with ME/CFS, told us the criteria I met & the category I fitted into. After numerous tests, he told us that I have issues that affect my mitochondria, immune system, brain, nervous system & thus my whole body. I cried, no more denial plus a doctor who not only believed & understood when I explained my symptoms but had no doubt what illness it was. He even offered a few suggestions that have helped to relieve my symptoms, although I’ve had to adapt them to what my body will tolerate. Lately we’ve added Immunovir to the list. So far I’ve noted more reduction of symptoms & hope that can continue.
After 16 years, I have had to stop denying that I have M.E./CFS & that the doctors were correct in 1998. As I think back on my life, I’ve probably had it since I was a child. I had just adapted my life to my low energy levels, which to me were normal. Then I had a career that I really wanted to keep & pushed my body beyond it’s limits, instead of listening to it. How was I to know the repercussions?
So now it’s 2014. I’m 55 & officially out of the workforce never to return. I had to hire a lawyer to get my disability benefits that had been denied. Mediation eventually resolved that issue this year. With the help of the CPP Disability Manual from the ME/FM Action Network & the specialist, I have been accepted for CPP Disability Benefits. My husband & I are slowly recovering from the stress of the last 4 years. I continue to try to recover from my 2nd major crash, unfortunately it is not as successful as after the 1st crash, with cognitive issues playing a much larger role this time.
I try to listen to my body more. I try to ‘PACE’. I often wear a heart monitor when active so as to stay in MY zone (<125 bpm). I do self massage & deep breathing with imagery, stretch, eat as healthy as possible, take supplements & Immunovir, drink lots of water & find joy/peace where possible. I'm not always successful at all of the above but what choice do I have but to try? I've seen the alternative & what it does to those left behind. Life is precious. Life is short. I will live it to the best of my abilities.
In memory of Donna Desjarlai