Entry #2: Bitter

I’m not sure if this is a self serving public diary or not. I’m not sure how many people really want to read about how I loath in self pity. How I’m thinking why did this happen to me. It’s been a 16 months since I became ill. Get over it.

The fact is I’m still bitter. I still cry when weird uncontrollable things happen to my body, when I am so sick I can’t get out of bed. Yes I am angry.

I am angry and I am bitter.

This was supposed to be our dream retirement. 2.5 years into it I had to get sick and change our life forever and mess it all up.

I feel guilty for the pain and anguish this has caused my husband. For the difficulty it has put on our marriage. I know for better or for worse, but those are just words you say the day you get married right?

Despite all this anger I am grateful for having such a wonderful supportive husband that has stood by my side. Despite me being so difficult to deal with and the countless days I couldn’t even get out of bed. He has lived by those words he said 27 years ago even though he is going through his own living hell.

After being diagnosed with Rickettsia and the doctors attributing my fever, rash and stomach problems to salmonella, I thought I would get better. I did for a few weeks.

Then I got worse.

Subsequent blood work confirmed the worse. 6 weeks after pulling the tick off my body I was diagnosed with Lyme disease.

The doctors said it would be ok. We just need two more weeks of a different antibiotic treatment and you would get better. The first round of injections and antibiotics were ineffective so now that we know I will get better.

Wrong.

I got worse again. I was referred to a Lyme Specialist who is one of the best in North America. This is where the news became even worse.

Because so much time had passed and the first two rounds of antibiotics didn’t work, I was deemed chronic. He told me “there is no cure for chronic Lyme disease Warren. ”

He went on to explain that when attacked the Lyme bacteria actually form multiple colonies and surround themselves with a biofilm which unfortunately blocks out attacks by the human immune system and antibiotic treatments. They hide out in your organs, your joints, and in your brain. The best we can do is control your symptoms. “There is no cure for chronic Lyme disease Warren”

I am bitter for the self confidence that was stripped from me. I used to work out at a gym 7 days a week. I was toned and in shape. I would power walk to the gym 3 miles there and 3 back. I was 167 lbs (76 kg) and toned and looking good.

But one bug bite followed by taking too long for a proper diagnosis stripped all of that. Now some mornings I can’t even get out of bed. Some days I have so much pain I walk like I’m 100 years old.

I try to stay positive and on the outside I show that I am dealing with this disease. I say to them “Why me? Why not me. ” When deep down inside all I want to do is cry.

Inside my head I hear “there is no cure for chronic Lyme disease Warren ”

Enough. I’m crying again. I’ll post again soon.

Warren Bennett – Chronic Lyme Disease