Monday, July 4, 2011

Lyme the Second Time Around

When I originally contracted Lyme in 1989, it took years to develop all the various symptoms that ended up consuming my existence.  That I was misdiagnosed for such an extended period of time, 19 years, I never had the perspective to compare what I was going through to a knowledge base of the disease itself.  The first time around, I did not have the ability to understand why my body was experiencing such horrific pain.  What I went through for close to 2 decades was the lack of the most basic knowledge of what was wrong inside me without ever being able to have anyone explain why my life was being sucked out of me in such a painful manner.
19 days ago, my Lyme came back with a vengeance that has really made me realize what I was forced to tolerate for such a ridiculous period of time.  The surging pain that has been passing through various areas of my body since I started to ride again on Friday is simply unbelievable.  To be able to consciously analyze how I have slipped from "living mode" back to the horrible feeling of "survival mode" has been the most debilitating part of the last couple of weeks.  What finally hit me yesterday was the realization that the joy that Cycle For Lyme has been from the start is being drained away by the desire to simply get it over with so I can curl up into a ball and sleep.  I have in such a short span of time gone from wanting to be out here to wanting to go hide.
This is the demoralizing beast that Lyme disease is, you go from enjoying all that life is to merely trying to get through the day without any unbearable symptoms.  What fixated itself in my head today was an experience I had with a totally incompetent and completely Lyme illiterate "specialist" doctor.  After less than 20 minutes speaking with me, and without any real knowledge of my medical background, this doctor proceeded to tell me that my problem was that I had IBS, Irritable Bowel Syndrome.  Now I am not trying to make a total mockery of the man, but really, how does a body plagued with muscle and joint pain, constant fewer, relentless migraines, etc, all point to an irritation in my bowels.  This is the comedy that is western medicine - ignore everything the patient says and then give him a pill to mask one of the symptoms. 
There is a reason our doctors that can't see the forest from the trees, because they are taught to think that forests do not exist.  Our healthcare system is designed to treat each individual symptom with a pill to make the "symptom" go away, without a second thought about actually figuring out what is wrong with the body for it to be creating the "symptom" in the first place.  This medical experience that I describe is something that occurred to me dozens of times in 19 years.  Time after time, my doctor would pick and focus on one tree while ignoring everything else I said, so that he could put my problems into a little pill.  Until our healthcare system wakes up to the fact that the human body can react in multiple ways to something like a bacterial infection, Lyme disease will never hit a doctor's radar screen. Until our healthcare system takes a step back and acknowledges that a serious flaw exists in its design, we will continue to be grossly over medicated with pills that never cure the illness.
In the span of less than 30 minutes while in Kingston, I drastically altered the planned Cycle For Lyme route.  Rather than staying on highway 2 west from Kingston, I switched to the more scenic route called either Ontario King's Highway 33, or simply, the Loyalist Parkway.  This road and the towns and villages that I cycled through are another reminder of all that we miss while getting to our destination at 120 kilometers an hour on the 401.  What I understand as I write this is that this is an area that Heather, Gavin, and I will have to come back to see properly when not rushed and when I am living again, not just surviving as I am today.

1 comment:

  1. Keep your chin up James! You're doing a great job, and to go through this ride and being in pain... well, it's quite admiral!! Just try to keep thinking of all the people that you are meeting thru this, and the information that you are passing out, and of the people that you are saving from having to go thru all of this... I know that all of us that are suffering from this horrible disease, appreciate all that you have and are doing...

    As for all the idiots in the Health Care system, and the government... hopefully one day, they will pull their heads out of... the ground, and realize what their lack of interest and treatment is creating... and just how many of us ARE suffering from this disease!

    So keep up the great work! At least you have your family with you for this last week... you can do it!!!