I know the day because it was a clear day of tick infestation with over 7 ticks presenting themselves at the end of a long hike. So how could it be that Lyme would go undiscovered for three years? Shockingly easily, I am afraid to admit. A hard lesson to learn.
I had decided to do a 300km hike through along the Rideau Trail from Kingston to Ottawa. It was a mix of urban trails at either end with more unmanaged wilderness trails for sections in the middle. I had heard of others doing it in over two weeks. I decided I didn't have that much time and always like to push myself, so I decided for one week. This would require hiking 40-55km/day with a 40-50 lbs backpack. I planned the trip so distances were shorter on the sections that were more rugged; with a lot of climbing.
People often asked me why I wanted to do it. I had been thinking about it for a few years. The reasons accumulated to the point that I really had no choice...it was the obvious thing to do.
- I had torn my MCL and meniscus so had many months of recovery where I could run, so I did a lot of walking and hiking
- I have always been a travel bug but am a big believer we should explore our native areas as well as distant lands
- I manage some of the parks that this trail travels through, I felt it was important to get to know it intimately
- I had a friend who had lost a lung to cancer and thought she could join me in training of the walk
- But most of all: I was struggling to get over the loss of my father three years earlier. It felt like losing him was crippling me living my life. I had decided that if I spent 7 days, tirelessly walking by myself, alone in the bush, I would be forced to face my sadness. I could not longer ignore it, stay busy and avoid it. I would be forced to feel it and figure out how to deal with it, or so I thought.
In my final weeks of preparation, a few friends decided they would join at points along the way. So I began the walk on Father's Day, seemed appropriate but was really picked to be after black-fly season, before deer flies, not too hot and not hunting season. There really are not a lot of options left after you factor in these considerations. Three of us walked that first day in torrential rains, cold weather and some directional mishaps. At one point I have to travel ahead because of a hip injury and a foot injury occurred by the other two. They were picked up a very loyal friend who always seems to know the right time to swoop in and save the day.
The next day I hiked on by myself. I had enjoyed the company but knew if this challenge was to really serve its purpose, I also needed the challenge of doing it on my own. I headed off the second day, knowing this would be the toughest section of the trail. But there was a freedom, being in the middle of nowhere all by myself, that really motivated me. I walked with a smile on my face and a restful heart because somehow this felt like what I was supposed to do and was where I was supposed to be. For a few kilometres in Frontenac Provincial Park, I walked on well established trails, with a true peace of mind. Until later that day conditions changed, the conditions around me and the conditions within. The trail was flooded in most parts, so badly that often there was no way around it. And if I did get around it, it was through thick bushwalking which I knew was going to put me back hours and energy. So after many hours, I decided to walk through it, which proved to be a very fateful decision.
It took me over 13 hours of solid walking that day (I remember stopping once, for 5 min.) to make my destination. After getting lost the final section required me to cross a river, which under normal circumstances would have been a stream with planks to cross, but I could see the planks downstream and had no choice but to cross water up to my waist. The last few kilometres, were the longest of my life. It was triumphant to reach the campsite. I had promised my husband to stay at an established campsite when I was alone vs. just setting up camp along the way, just for safety and security. I believe that was mostly to avoid bears. I had walked down to register, to a less than favourable reception. I am not sure why? They were listed as a campsite for this trail. I started to wonder if maybe the bears would have been friendlier. I started to set up camp at a spot near the entrance, took off my shoes to soon realize not only were they very swollen, the wetness had started to make many parts of my feet raw.
My husband stopped by to replenish supplies and after he left, what was to be a nice, quiet, restful evening turned into anything but. I ate my supper and then settled into my sleeping bag to a very unrestful feeling. After trying to fight the feeling for a bit, I decided to get up. I opened my sleeping bag to several ticks running around. As you can imagine, that was enough to explain the restless feeling and I decided to head for a shower and shake out my stuff. When I got to the shower it was dusk and I realized there were no lights. So with the light of a flashlight, I examined myself to see over 5 ticks just on my back. Most of them were easily swiped off, except for one. It was directly in that spot between your shoulder blades that it is very hard to get to on your own, especially while trying to hold a flashlight up to a mirror for light. I worked away and worked away at it. I felt relieved when it was removed because it didn't seem engorged and I knew it wasn't attached for more than the vital 24hour period. So it was impossible for the bacteria to have entered my body, right? Wrong.
Working in parks management for over two decades the dangers of the outdoors were well known to me and I felt quite equipped to deal with each one. The organization I work for has always invited in the experts to teach on things such as ticks and related safety issues. I knew what to do. I just didn't expect to be in the middle of nowhere, in the dark, late a night, tackling a tick in the only square inch on my body I could not reach or see easily. But I had thought I did the right thing. If a tick has not been attached for more than 24 hours, it will not be completely engorged from feeding on you. And it is when it is completely engorged that it will start to release the bacteria back into what it is feeding on. So I was safe; I had checked myself carefully for all ticks, I removed the only one attached within 24 hours, I made sure it was all out (head included). I went to bed and would have slept restfully except for the raccoons that managed to get most of my food out of the small drink hose hole in my backpack. I ended up resorting to sleeping in a small cocoon tent with a 45lbs back pack on top of me...what a night. Yet, I felt content knowing all hazards were averted.
The next day, I thought to myself, there is power in knowing I was bitten by a tick. At least I know I was bitten by a tick if symptoms start to present themselves. Many Lyme sufferers don't have that luxury. So I considered myself lucky that I knew. In the end there proved to be some very hard lessons on Lyme in the experience, an experience that went from a one week adventure caused by a travel bug to a three-year battle caused by a tick bite.
What took me three years to learn are:
-Without delicate removal of a tick, you run the risk of squeezing bacteria into yourself even if it has only been attached for a short time
- Immediate Lyme symptoms can also mimic many other things such as those expected from the infections I had in my feet.
- Symptoms can subside with a short course of antibiotics (such as was prescribed for the infection in my feet) but only temporarily. This makes it difficult for you to associate returning symptoms to the tick bite.
- After many months Lyme symptoms are not just the typical flu-like symptoms that they talk about. It feels more like you catch every infection and virus going. So the symptoms change all the time. Again, making it hard to relate the illness back to the bite.
- After it becomes Chronic Lyme (6 or more months), the symptoms are not even close to what is described on websites and information sheets. They become the types of symptoms you are sent to specialists for and they add up, making your list of issues feel endless.
- I also had no idea that the blood test for Lyme was so inadequate. I was tested for Lyme 3 times and it was always negative. This gave me confidence that it could not be Lyme. I have since learned that the US Lyme tests are drastically inadequate, but the Canadian one is even worse. False confidence is all it is.
- Also the longer you have Lyme the less likely the blood test will pick it up. So a test that is already brutal can only get worse. I am told it has something to do with how the proteins bind together and therefore are not picked up in the blood test.
- Being covered up in clothing is not as good of a preventive measure as we like to think. I had thick running tights on that day, with two long sleeve shirts, a rain jacket and a 45lbs backpack on me. All of the ticks were under all of that and I sometimes wonder if I had not worn all of those layers, I may have noticed them earlier, or easier or when I had help...who's to know.
The only thing I reasonably could do differently in reflection is to have asked someone to help me remove the tick with tweezers. That simple task would have changed the course of my last three years. But many factors that day led to me believeing I did not need to do that. Rather ironic that an adventure where I was trying to prove my strength and independence, would require me to be more vulnerable, need more help, assistance, and support, than I could have ever imagined. I actually thought I had learned that on the hike. I had friends join me and support me in ways that touched me deeply. I remember thinking after my hike, maybe life is not about being able to do it on our own? Maybe we are meant to need one another now and then? Now after three years of misdiagnoses, mental and physical decline and radical measures to save myself, I have clearly answered those questions. Doing this on my own, was never an option. I now believe life is about asking for help when needed and offering it when you can. I plan to do the latter in so many ways when I am well again.
I have been supported, blessed and loved beyond belief.