Food for thought today...
Lorrie Jorgensen
From Monday's Globe and Mail Monday, Sep. 28, 2009 12:00AM EDT
I wish someone would hurt me. Not kill-me kind of hurt, but enough to damage me visibly. They could run me down with their car or batter my legs with a baseball bat. That would work.
I don't normally think this way but on my tired days when I'm really wiped I tend to get dramatic and over the top with self-pity. I have multiple sclerosis and one of my biggest challenges is battling continuously to overcome the debilitating fatigue that accompanies the disease. Like a junkie, I have worked my way through the available medications, but nothing has worked for long.
The medical community does not know what causes MS but there are theories. There is an increased prevalence of the disease in northern European countries, leading to discussions about environment, lack of sunshine and vitamin D. There is also talk about predispositions, viruses and genetics. Being female almost tripled my odds of getting the disease. There is no cure.
The tiredness is hard to describe. It's not like the fatigue you feel when you have completed your first 10-kilometre race or triathlon. I wouldn't know what that feels like, but I've seen the joy and elation that accompanies the exhaustion runners bring to the finish line and this isn't the same kind of tired. Runners are rewarded with endorphin buzzes and recovery time. In the grip of MS fatigue I am not.
It's also not the kind of tired you get when you've stayed up all night to study for an exam and then aced it. You are still grinning with the accomplishment on the way to giving yourself permission to sleep all day – a worn-out, blissful utopia. I know what that feels like and it's not the same kind of exhaustion. There is no joy or elation, no rewards or accomplishments.
MS fatigue is lonely, depressing and full of guilt. It is being exhausted just thinking about doing dishes, vacuuming or knowing there is another day of work ahead. I have become proficient in the art of negotiating with myself.
When I miss work or a social activity, I obsess over the need to explain myself to people. Other times I play the silent martyr, hoping for compassion and understanding that I am unable to ask for because outwardly I look normal and I'm afraid people will think there's nothing wrong.
Multiple sclerosis is an autoimmune disease in which the body's immune system attacks the myelin coating that protects the central nervous system and the brain. I have lesions on the white matter in my brain and on the days I stumble over my words, saying door when I mean window or open instead of close, I fear I'm losing my mind and imagine a giant Pacman munching away my sanity, my health.
The inflammation and scarring of the myelin interrupts the usual communication between nerve cells and can result in a wide variety of symptoms depending upon the affected areas. These may include blurred or double vision, loss of balance, trouble with co-ordination, muscle stiffness, bladder problems and memory loss or other cognitive concerns. Not all people will experience the same symptoms as the disease's progression is unpredictable and personal.
At the height of my first major episode six years ago I went numb from the hips down. It started as a tingling sensation on the bottoms of my feet and within five days it had progressed to my pelvic area. When I closed my eyes, falling over was a concern because I couldn't sense where my lower body was. I learned to shower with one eye open. Driving was out of the question and walking was limited to an uneasy shuffle with my hand on the nearest wall, railing or companion. The grocery cart became my walker.
I am in the initial stage of MS – relapsing-remitting. It's likely that I will some day move on to the more progressive stages of the disease. I live every day as it comes, and every second day I self-inject a disease-modifying drug. Its side effects are flu-like symptoms – aches, pain and fatigue.
Most days, when I am only ordinarily tired, I cannot complain about having MS. The possibilities when I was diagnosed in 2003 were either a virus, multiple sclerosis or Lou Gehrig's disease. I wished for an easy-to-cure virus, but considering I could have had ALS, with a life expectancy of two to five years, I feel fortunate my outcome was MS.
My life is full and, odd as it may seem, I am grateful for all the disease has brought me. Since my first acute episode I have managed to quit smoking and drinking, two activities I was really good at. I started eating right and hired a personal trainer, lost 50 pounds and am now healthier and fitter at 49 than I have ever been in the past 25 years.
Sometimes I wonder if I had not been diagnosed with an incurable chronic disease would I have made this kind of commitment to myself and to my health. In a way having MS saved my life because I've chosen to live and fight every day. I'm glad I will never know what not having the disease would have been like.
Lorrie Jorgensen lives in Godfrey, Ont.
Illustration by Larry Humber.
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 | I was diagnosed with MS in December 2008 at the age of 30 after waking up one morning unable to talk or walk. I too found ways to be thankful. For me, the other possibilities the doctors were looking at were a brain/spinal tumor or a stroke. In comparison MS seemed like the best of the worst. And so far, I can't complain. The daily injections I take seem to be woking, keeping relapses away, and me at work. I have also been given a glorious window of opportunity to plan ahead, and prepare for whatever may come my way - I now plan to buy a bungalow instead of a two storey house, I've destressed my life by cutting back on volunteer commitments focusing on family, my husband and I were able to refocus our financial goals with saving for a rainy taking on a whole new meaning. I also excerise more frequently, take my vitamins and eat better. Still, I live in the hope of a cure. A cure would rid me of the fear of once agian waking up unable to walk or talk or passing the disease on to my unborn children. I am hopeful that I will see the cure in my lifetime, not just for myself but for the 75,000 or so Canadians who also are afflicted. Therein will lie my biggest thank you of all.  0  0 | |
| | similar thing for me some years ago with gout, I now thank God for it - had to lose weight & stop drinking ... which was for the best good luck. 1 0 | |
| | I used to write stuff like this, until I got to the point where I couldn't walk at all. Living in a wheelchair it is not any fun at all. And I also find that the medical profession is clueless. This person gets good description of the fatigue, which neurologist and GPs attribute to "multiple sclerosis", but in many cases it is the lack of T3 thyroid hormone. They are not testing this at all in MS... in my case, my TSH was always normal and they kept telling me I did not have a thyroid problem. But when I finally found a doctor that ran the proper thyroid panel, I had virtually no free T-3. My fatigue is gone, but I am also taking 110 mcg of time released liothyronine, which freaks doctors out. They are so ignorant of thyroid treatment that they think that T3 will immediately will cause a heart attack. also, there are potential therapies out there that you won't hear about from a neurologist. Many people are having incredible results with low dose naltrexone (LDN). It's worth a try, this is becoming the treatment of choice in Europe... T3 controls everything, your heartbeat, your digestion, cellular respiration, you name it. What a lot of suffering because doctors don't test thyroid properly. And without thyroid hormones you cannot maintain myelin production. It is not the total answer in my case, but I would be bedridden without the thyroid hormone, and I have to go to about 20 GPs before I found one that would properly test. No wonder people are sick, the doctors have decided that the TSH is the gold standard of thyroid testing which is total bollocks. TSH is actually a pituitary hormone and does not reveal whether the thyroid can produce hormones or whether you are properly converting T4 to T3. That was my problem. I had lots of T4, my TSH was normal, but I could not convert the T4 into the active hormone T3. 6 0 | |
| | Thank you so much for sharing your experience. It's amazing how chronic disease can take on so many faces and affect people's lives in myriad and often counterintuitive ways. As an aside, there's tremendous excitement about a new development in the fight against MS. An Italian researcher, Dr. Paolo Zamboni, has discovered that virtually 100% of the people with MS whom he examined (and none of the control patients without MS) had abnormalities in the veins draining the brain and spinal cord. He and several other physicians recently completed a trial that showed that treating these abnormalities (with balloon inflation in the veins affected) can have remarkable results on symptoms and progression. Have a look at http://www.thisisms.com/forum-40.html, or search for "Chronic cerebrospinal venous insufficiency" (or CCSVI). 11 0 | |
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