Hello dear Lymies and loved ones,
We haven’t known each other all that long, but I feel we are friends already. Let me tell you a bit more about me, so you can feel that I am your friend also.
How do I sum up myself? I am many things. I am much more than a sick person — I am a Christian, totally convinced of God’s goodness. I am a wife to a kind and patient man. I’m “mum” to an awesome dog, Gustav. I am a baker, a writer, a decorator, a plant enthusiast, and love so many more things. I am cheerful, hopeful, and strive to be kind. More than anything, I want to be an advocate for people. And I am sick with Lyme Disease, multiple co-infections, and a handful of other problems.
I’ve been sick eight years. For the first two years, I was misdiagnosed with Fibromyalgia. I was never quite satisfied with that diagnosis, and after talking with my mentor (who happens to have Lyme), I started to wonder if Lyme was the real cuprit. I was tested, received a positive diagnosis, and was immediately “released” by my doctor who didn’t know know how to treat me. It took me six months and six doctors before I found a Lyme Specialist with a treatment plan. I’ve been in treatment for five years, and still going.
I’ve had most of the symptoms you could think of: pain so intense you can’t breathe, dislocating joints, fatigue, insomnia, nausea, diarrhea (I seriously cringed typing this word), migraines, memory loss, brain fog, seizures, blood pressure irregularities, tachycardia, etc.
The symptoms themselves aren’t the worst part of being sick. I think the worst part is the loss of life you experience. I am only able to accomplish roughly 10% of what I used to do in a day. Coming to terms with that has taken a while, but what has taken longer is figuring out how to fight for what is important. To me, remaining cheerful, compassionate, hopeful, and learning to be wise with my body have been my biggest goals.
I have an awesome husband, Kevin, who has endless grace and patience with me. He never grows tired of being kind, and I’m awestruck by that. Being sick is so hard on loved ones, and it creates tension and hurt feelings. We’ve worked hard to communicate with each other and to find opportunities to be grateful and to celebrate. We work hard at finding ways to serve the other one, and it creates a special bridge that makes our relationship rich despite our difficult circumstances.
I’m writing this blog in hope that it can be encouraging to other Lymies – both in the very practical sense of getting better AND when it comes to the emotional / mental / spiritual readout of being sick. Your life can still be really rich and good. Believe it or not, I’m actually happier now than when I was well. I feel much more confident in who I am, because I’ve made choices about what is and is not important in life. This blog chronicles all of it – the practical health stuff and all the cool other stuff I’ve learned along the way.