I just wanted to write a post to say thank you to every one who supported my Lyme Disease Awareness campaign. I understand that it can be hard for a healthy person to understand what I actually go through on a daily basis. 7 years ago I wouldn’t have been able to imagine being in so much pain – so I get it. This is why it means a lot to me that you’re trying. The support I have, and am still receiving on Instagram has been overwhelming – in a good way. The kind comments help to raise my spirits on my bad days when I’m hating my body. I’ve been trying to think of a way to really explain what I go through but I don’t think I can do any better than my Lyme and Loss post. Instead, I hope that you will go to my friend’s blog and read what she has written. As well as being the sickest person I know, Amara also has a way with words. When you read the post, please keep in mind this:
“I think I confuse people. I’m not. Sharp that is. I have these bouts of lucidity. And through willpower I can force myself to focus very hard. But I am completely scrambled. Earlier I got stuck on the bed with my feet on the walker, my hands on the handles, laying backwards, my hands being pinched. I couldn’t remember what to do. The meds work for brief periods but I can’t critically think or research I forget what it is that the first half of the sentence said. It’s deceptive. I seem much better than I am and than people see vision of me and get some insight…. but still don’t really understand how cognitively challenged I am and that it is just the skin of my teeth and sheer grit by which I manage to even communicate somewhat coherently.”
That is exactly how I feel but I’m not able to explain it as elegantly as she is. There are so many things I want to write about and say but most of the time my mind is in a thick fog. I try to grasp at thoughts but it’s like they’re just out of reach and the harder I try, the further away they get. There are a few pieces I have read that have explained my life better than I can, and Amara’s is one of them. I am lucky to not have seizures but other than that, the post explains my deepest feelings and struggles. I hope that by reading her blog, you will gain a better insight into everything that is chronic illness and Lyme Disease.