(photo taken while seeking treatment in Germany last year – took a trip to a local park in a wheelchair with lovely MB pushing)
I’m enjoying blogging. Probably more than I thought I would. It feels good to have an outlet. Something I’ve noticed in my years of ill health is that one of the things that seems to get confiscated is the ability to proactively create. Cognitively and physically, with diminished life force you can’t go throwing your energy into so many things…sometimes that translates into such an intense period of contraction that all you can do is lie quietly, in silence and darkness and try to breathe. Sometimes the fatigue makes even lying quietly feel arduous. It’s a hard thing to convey if you haven’t felt it but much as we, the ill, crave understanding I would never wish this upon anyone – your empathy is accepted but please enjoy your ignorance …and I mean that in the kindest way possible. You WANT to be ignorant of this. To know it intimately is a kind of trauma that can be endured but will fundamentally change you – like a hammer to brittle insides that must then be carefully put back together. The hairline cracks never quite disappear though.
The tone of my writing, you might be able to tell, is different today. I don’t have much energy to throw around today and so unnecessary elements like humour and …I can’t actually think of another word right now…get sacrificed and pruned away so that the core activity can continue. In this case, getting a blog publsihed. I am deliberately highlighting certain words and just going with this as I type to try and illustrate what a less ‘good’ day looks like. Right now my left hand, in particular my middle finger (subconscious sticking it to lyme maybe) is tremoring. The bold words are ones I had to stop and wait for the cotton wool wall in my brain to disperse so I could find them. You may not think that’s a big deal really but it’s not normal for me and is something that comes and goes in varying intensitiy. I’m also highlighting the words I’m misspelling.
Over time I hope by consistently writing here (even when I feel less able) it’ll paint a picture of the up and down nature of this illness. You can see, even in the microcosm of this blog, how what I can bring to it (and the rest of my life) can vary quite a lot. The more humorous and entertaining and animated – the more likely I’m feeling stronger…my leash is longer on those days. Days like today I’m twitchy, weak, dizzy, foggy, tired.
I sought solace today by reading some other Lyme blogs – I find it comforting to hear my story from strangers. To read my own doubts, hopes and insecurities shared by others. I happened to stumble on a particularly good one from an esteemed author, the one Amy Tan. So I’ll leave a link to that here as she’s come out the other side so it’s ultimately pretty uplifting but she describes the challenges beautifully.
Here’s an excerpt from her website to whet your mental appetite:
I took antibiotics for seven years. Whenever I stopped, my symptoms returned. I learned that Lyme can persist because the bacteria can go into what I call a stealth mode–taking on different forms and going into hiding until the coast is clear.
I am in this for life. But at least I have my life back. I can write fiction and having the normal difficulties every writer has in finishing a novel. I can speak at conferences and walk in my neighborhood alone, without anxiety and panic. I can do arduous book tours and do too much in one day and get too little sleep, and I don’t suffer the next day as a consequence. Recently, I swam with whale sharks for four days. As healthy as I am today, I always keep in mind that the bacteria is still in me. One day, the mushrooms or antibiotics may not be enough to stave it off. But instead of living in fear and uncertainty, I built a house that can accommodate whatever happens to me– an accessible and beautiful home.
As a Lyme patient, I have joined a club of people with a stigmatized disease that many doctors do not want to treat. While I have been lucky enough to find a doctor who is willing to provide open-ended treatment –and I have the means to pay for –many of my fellow Lyme patients have gone without appropriate care. As a consequence, they have lost their health, their jobs, their homes, their marriages, and even their lives.I now know the greatest harm borrelia has caused. It is ignorance.
It’s no coincedence that I’m feeling worse, I just started back on antibiotics again yesterday. This is a masochist’s illness. A marathon with plenty of hurdles, but as Amy’s story shows…there can be life after Lyme.