Lyme Support in Victoria?

I've had this idea for a while but it's been really hard to articulate. Thanks to a new treatment I tried this weekend (I'll tell you more about it another day), my brain is clearer than it has been in years. Not perfect, but who knows if it ever will fully recover. But the point is that I'll give a shot at describing the idea and try to explain what has lead up to it.

One of the things about having Lyme, especially in Canada, is that you really are alone. Yes, family and friends do their best, but it is an invisible illness and all but the most attentive individuals tend to assume they know how you are doing that day. People, in well meaning attempts to be helpful, treat you as if you are as healthy as everyone else because you don't look ill. Others try to help by treating you as if you are a complete invalid and don't let you do the tasks you can manage. Both of these are hard to deal with. Very few people stop and ask how you are, they just assume, and this makes one feel desperately alone.

The medical establishment isn't any help. Even if they did acknowledge Chronic Lyme and provide treatment for it, what treatment could they give? There aren't proper clinical trials for the illness as there isn't a solid diagnostic criteria for it. So most of the information they have to go on is based on anecdotal evidence. So, any treatment a licensed healthcare provider was to recommend has to come with the disclaimer that it's not ethical (in Canada) for them to prescribe it. So there isn't much support there.

What about other Lyme patients? I just had a long intake of breath through my teeth making a concerned hissing noise after writing that sentence. Even though this is the best source of support, I have two worries.

First, Lyme affects everyone differently. Then there are the co-infections and the co-morbidities that go with it. So even though we go through similar situations, there are always differences with each course of the infection that we don't always understand in other people.

Second, and this is the part I'm not certain how to phrase correctly... second, ... Let me put it another way. My mother, who I love, has a history of joining support groups. Now, my mother, who I love, fully intended to use the groups to get well; however, in actuality, often used them as an excuse to stay ill.

You see, I worry. Support groups that centre around an illness, seem to me, to produce an undesired effect. It often reinforces the awareness that we are ill and the hopelessness and the trials and the fact that the rest of the medical community is against us and that our family doesn't understand us and everything else that is negative about our lives. It also gives us an excuse to stay ill. Because other people are just like us, it's perfectly aright to stay this way.

Does that make sense? I told you it is difficult to articulate.

Yet, I think that getting together with others in the same situation could be healing. But, how do we get away from reinforcing this victim-culture?

How do we take a potentially negative situation and turn it on it's ear? How do we centre it around a positive force? I have a thought. I don't know if it's a good thought. Actually, it's probably a stupid thought. But, it's a thought.

What if we weren't a group of people who got together because we have Lyme? What if we were a group of people who got together to do something like knitting and we just happened to have Lyme? Um, that needs clarification.

Throughout my life, good times and bad, there has been one constant comfort. It is that I can knit. I can take a ball of chaotic yarn and turn it into socks, or a sweater or, mitts, or anything. This is a skill I have and I can accomplish something even when bedridden. It is comforting to wear a sweater I knit or to strut around the house in a newly finished hat. Knitting really has changed my life for the better.

Since I've become ill, my yarn-friends have become essential to my well being. They have helped me financially and by giving what they can. But most importantly, they help me by making me feel like a normal human being, even if it's just for a few hours every Thursday. We get together, we knit or spin, we talk about life, we laugh, we tell stories, share recipes, and we have fun. It's my window on a normal life.

It's funny because many of us have a history of illness or a close love one who is chronically ill. It wasn't intentional, it just sort of happened.

So, what about if we created a group of yarn-friends who just happened to have Lyme or know someone close to them with Lyme?

Would anyone like to be a part of a knitting group for Lyme? I'm willing to teach any who want to learn. And, I know the perfect spot with the most supportive people you'll ever meet. So what do you say? Can we turn Lyme on it's ear and create something special together?