Part 8 of 13 of Anna’s Story at CanadianLymeStories.com
Buoyant mood or not, I did not rush right into taking my medicine. I would guess I am not alone in this. Some of my friends were feeling so terrible that they couldn’t wait to get started. I, on the other hand, was feeling pretty well, after not feeling well at all. And I had a pretty good idea that the medicine was going to teleport me back to a pretty dark place.
Lyme is so tricky. I have watched my friends, more and less ill, put off taking the medications or going down to see Dr McShane. I can really sympathize. Even if you are pretty much convinced that these microbial infections are a ticking time bomb, and even if you are unwell, it takes courage and perseverance to undertake these treatments. It is very likely you’ll feel worse before you feel better, and everyone is different, so the outcomes are not entirely clear. Taking them is, to some degree, an act of faith. In addition, treatment takes time, money, and support from those around you.
Some people were tough for me. One asked me again and again: ‘Explain to me again why you’re taking these medicines? I don’t really get it.’ The implied skepticism of their questions made me defensive. I can’t help thinking that it is an especially irritating aspect of Lyme that you first have to convince people of the validity of the complaint, then of the validity of your course of action, and then, maybe, they’ll consider cutting you some slack.
Not that you can really blame them. If they care about you, they have looked up Lyme and have had their worry fuelled by the dysfunction of the Canadian Medical establishment’s position on Chronic Lyme and its treatment. That said, when you are already struggling with illness and brain fog, the lack of buy-in to the treatment(s) and lifestyle changes you are making in the interests of being well can be disheartening. In some cases it’s that extra kick in the pants you really don’t need.
Looking back, I remember a movie I watched where a guy knows he is going to go to jail in 24h. I don’t remember why he is out on the street (he is up for hard time), only that he kind of throws everything at the feeling of his last moments of freedom. It might sound melodramatic, but that is kind of how I felt. I felt so bad, being ill (as I’m sure all of you know) so I had a pretty good idea where I was heading.
Of course I had read the spiel on ‘Herxes.’ ‘Four or five days of “flulike symptoms” with the suggestion to “drink lime juice and take charcoal pills”,’ but I wasn’t buying it. I had seen what happened to my friends when they took things to make them better. They got worse. Much worse. For quite a long time. And then they (hopefully) got better. So to some extent I knew what was coming. Or I thought I did.
My children were going to sleepover camp for the first time that summer. It would be the first 2 weeks in 10 years where I had no responsibility. I also had lots of airline points on my Visa card, a husband who was rehabbing his knee and couldn’t walk, and the summer Olympics (which I hate and my husband loves) were being televised from London. My husband and I agreed that it might be best for me to use my Visa points to go surfing in Hawaii.
I went on my own and met up with a surfing teacher for a couple of hours every day. The rest of the time was more solitary than I was used to, which gave me time to think.
I thought a lot about the episode in Cleveland when my husband had been operated on: the way I could feel the symptoms slinking back in behind my fatigue and anxiety. I remembered Dr. McShane describing how any large stressor; someone close to you dying, a physical shock, something going wrong financially, might trigger a flare up. She herself had taken a the whole six month Cowden Protocol after surviving a car crash, just to make sure the Lyme bugs didn’t spot their chance and run with it, she had told us.
I was a bit lonely, far away from home all by myself. But I realize, in retrospect, that was a gift. It is hard to think of digging down and waking up those creepy crawlies, even if you are convinced that it is not good that they are there. It’s scary. And really, on any given Tuesday, there isn’t much incentive to take medicine you are sure will make you feel worse, and have some doubts will make you feel better. But the time in Cleveland, and the responsibility of caring for my husband after, had helped me realize what a bad idea it would be to wait until something goes wrong and you are exhausted or sick or depleted to try and exorcise these demons.
So while I had thought I was going to Hawaii to try out the beautiful long slow friendly waves, I think I was also there trying to get over myself enough to go home, put on my big girl panties, and take my medicine.
On to Part 9: the Medicine
Keywords: depression, denial, running away to Hawaii