People are starting to ask me this question. It seems that I've crossed some sort of imaginary line where I'm just supposed to be better now. Well guess what, I am better then I was in the Spring of 2009 when I had pneumonia, could barely walk, and was in so much pain I wanted to scream. I'm also better then I was a year ago. My energy has improved, I have more good days, I'm barely ever in pain I can't tolerate, and I can walk through the entire grocery store without my knees hurting at all.
But I'm not all the way better yet. I still require 10-12 hours of sleep a night, have issues falling asleep, my memory comes and goes, I have neurological issues like not being able to spell or type correctly (thank goodness for sell check), my digestion is way out of whack, and when I push myself too hard I pay for it with extreme fatigue, and long recovery times. But I am slowly, repeat slowly, getting better and figuring out the big picture of what is going on with my entire health, not just Lyme.
See one of the things that I think people aren't really aware of is that Lyme Disease is really just a nice tidy way to say my whole body is super messed up because I have an infection(s) that cause damage to all parts of my body, especially major organs and tissues. When I say I have Lyme I really mean that I have tick born illnesses plus other health problems that may or may not be related. The doctors who treat Lyme understand that it can affect the entire body and so they take a holistic approach to investigation, diagnosis and treatment. As symptoms come and go and treatments succeed or fail my doctors get more information about what is happening in my body. So right now I know that I have Lyme, possibly Bartonella (we know I had it at some point), candida, and adrenal fatigue. I won't be "better" until I've addressed all of those issues and it's going to take some time.
Please know that I'm planning on having a big party when I'm all better along with getting back to my previous life. I'll be sure to announce it to everyone when that day arrives. Until then, please don't ask me if I'm better yet. I promise, I'll tell you when I am. However, I do appreciate it when you ask how I'm doing today or lately. It's nice to know that you care or are concerned. Please ask me how you can support me in my journey to wellness, or when you can next spend time with me. Please tell me about what's going on in your life and please keep inviting me to things even though I sometimes can't attend, it's nice to be included. Please celebrate the small things with me and know that I'm doing everything I can to find the best doctors and the best treatments possible. I'm trying everything I think might help in hopes of finding that one thing that works for my body with my allergies, and sensitivities, and current state of health. I'm not just sitting around doing nothing. I'm fighting for my life, for my health. I may not be entirely better quite yet, but I am better then I was before and that's already a huge success.
If you are interested in another Lyme patient's perspective on this topic please check out this link: http://freeideasblog.blogspot.com/2011/02/question-is-not-are-you-better-yet-but.html She has done a great job of explaining why some people with Lyme need a long time to get "better".
And here's the link to the blog of a well known Lyme Literate Dr who has another way of explaining why some of us just don't feel better even after trying lots of things.
http://www.drjerniganblog.com/articles/infections/630
Well said lady...I'm glad your better than you were last year...me too. :)
ReplyDeletewe've got to start some where, right?
ReplyDeleteI'm glad you're getting better too.
I hear ya girl!!!!!! I kind of feel that way now and I've only been on treatment 5 months and I'm already feeling the ecxpectations by other people. I think although I am very hopeful about improving I think deep down I am very cautious about the possibility that things may never be the same again... I don't want to trick myself or set myself up to be very disappointed. It's about getting in the right head space...
ReplyDeleteIt is great to have people ask but I SO know what you mean by saying 'believe me, you will know when I'm better' : )
Great to hear about the improvements you have made.
It would be so nice if others could focus on the improvements and celebrate those with us.
ReplyDeleteThere is some truth in what you've said about things never being the same again. They won't be. They can't. We're changed forever because of this experience. I like to think that ultimately I'm changed for the better. I feel that I have become a more compassionate and understanding person. I feel like I can see pain and suffering in the eyes of others and that allows me to be more forgiving and patient with people in general. I have more respect for the permanently disabled and the elderly and what their families go through in loving and supporting them. I've also learned to focus on the really important things in life and I'm glad my life is more simple because of all this. I'm also proud of all the new friends I've made. Friends I hope to have forever.
A lot of good has come out of this really funky experience and someday I'll be a lot better then I am now. Hopefully, I'll be completely better.
Glad to hear about your improvements too Treya. Thanks for sharing your story with all of us.