Friday, April 3, 2009

Conflicted Lymie

I have felt conflicted as a Lyme Disease patient in the last few months. Since I am able to do more and more "normal" things, most people wouldn't even realize that I have Lyme Disease unless I told them. It is hard to fathom that less than two months ago a PICC line was sustaining my life. I am ever so grateful to every single person that had a hand in my current state of wellness. I am ever so grateful to God for helping me when my quality of life was nill and also now that my quality of life appears almost normal.

What's conflicting about that you ask?


I find that I am not quite "normal" and I'm not quite a "Lymie." I'm in a Lymie Limbo so to speak. It's very difficult because all of my Lyme friends that were in treatment well before I got started ... they are all still sick. Some of them even more sick than they were then. They all call me lucky and blessed and .. well .. NORMAL.

I feel like my body is the game Jenga. Where we're taking pieces from the base and adding to the top. That each piece we pull may or may not be a load bearing piece and that if you pull the wrong piece that my body will just come crashing down. It's important to be careful with every piece and use caution at every move.




My inner soul is aching right now. I ache because I don't feel apart of my most inner circle anymore. I feel as if (and this is probably not even true, but they are my feelings anyways) they don't think that I can understand what they are going through now because I am "well."

The other part is that I am so extremely good at hiding my feelings, my physical pains, my other ailments ..that unless you know me really well ~ you don't know that I still have *some* problems. Albeit those problems aren't even close to where I was two years ago ... It feels more like I did about 7 years ago when I was just having *problems* every so often.

So then when I do complain a bit about a pain here or a pain there, I get the whole "you NEED to be back in treatment." (to which I just want to scream .... )

Well ya know, my brain starts to get RUDE. I immediately think hateful thoughts towards the spiral things that have RUINED my life and unfortunately even to the person that suggests that I NEED more treatment. Then I think, you know what .. I am FIGHTING these little spiral things myself. My body is fighting it off itself. I have an IMMUNE system now and my body is doing what it needs to do to get rid of the Lyme Bacteria.

How do I know?

Because before whenever I was around anyone that was sick (IE a cold, flu, etc.), I would get sick. It did not matter how I protected myself ... I would get sick. Now ... not unless I douse myself with germs (IE when I went to the hospital to visit my granddaddy). Also if I have one or two bad symptom days, they don't last into weeks. My window of "Uh oh" is only 5 days. If I have 5 bad days in a row, I get the pit in my stomach "Uh Oh."

In March, I had 4 total "bad" days. Those were not in a row. Compared to March of 2007 where I had 30 out of 31 bad days. That means in the whole month of March in 2007, I only had ONE good day (and that's not a good day like I have now, it just meant that I hadn't thrown up and wasn't dizzy and didn't sleep for the majority of the day when I wasn't working).

But still even with only 4 bad days, I'm in Lymie Limbo. A Lymie that can't be normal and yet a Lymie that feels somewhat ousted by the Lyme community because I am not complaining every single moment about ailments that I have. The "normal" don't want me around if I do complain about my ailments and the Lymie don't want me because I am somewhat normal. Yes I know that this is all a falsehood created by my own imagination, but it feels somewhat true.

I guess I just need to know this:



Sorry this is so long, but I wanted to get out my Lymie Limbo emotions because I've been feeling like this for a couple of months.

3 comments:

melody said...

I don't have anything profound to say, but what you shared makes perfect sense. I especially liked your jenga comparison - paints such a good picture of what things are like for you with your health.

I for one am thankful for your blog and involvement in the Lyme community - you may not be as sick as you used to be, but you're an incredible encouragement - you give me hope that things will get better.

Kara said...

Keep up the "great days" and feeling strong. You are gaining! Hooray!!

I know what you mean about being "somewhere inbetween". Among my friends with Lyme I am pretty well off. Among my friends with Chemical Sensitivity I am functional. But I can't go anywhere except my house, 1 grocery store, or allergist's office without getting sick from chemicals. In addition to Lyme Disease, I also had a chemical poisoning and together the two make it extremely hard to get well. Like you mentioned it only takes 1 thing to make me tumble. But I am better and aim to stay that way. Being healthier has really helped my emotional state and that, I believe has boosted my immune system.

So keep up those smiles and thanks for sharing your feelings!

Jennifer said...

Thank you Melody & Kara for your thoughts on my post. I appreciate them more than you know.