Unpredictability

One part of Lyme that I find challenging is the unpredictable nature of it. For example, I have been feeling awesome for the last few months. I've been working hard, getting things done, having a good time, getting out and about, sleeping well, nearly pain free, and managing to have a decent amount of energy. Then, from the depths creeps up insomnia, knee pain, fatigue, stomach funk, headache, and general funkiness. Booooo! Go away you are not welcome in my body!

Over time I have figured out that certain things make me feel worse and that certain things help me to feel better. I try to keep up on the things that make me feel great, but even so, no matter how well I take care of myself the funk always returns and I never see it coming.

I know this is hard for people in my life as well. I have a hard time committing to things in advance and can only participate in certain types of events. My social life is a shadow of what it used to be. My husband never knows what he's returning home to. One day I might be dancing around the living room and the next week I'm flat on my back watching movies all day long.

I don't feel bad for my situation. I hope no one else does either. I understand and accept what is happening. I am just challenged by the return of symptoms which had previously vanished. It would be really nice if I could just slowly get better and better instead of being on a physical and emotional roller coaster. I guess life with Lyme really is like a box of chocolates, you never know what you're gonna get.

I'm learning to be patient, to live in the moment, and to accept each day and what it brings. I'm grateful for the good in all of this and I know one day I'll feel better again.

Lyme Awareness Month Conclusion

With Lyme Awareness month officially over, I want to acknowledge other people whose lives have also been affected by this disease, my friends and family. The sacrifices, adjustments, dealing, processing, helping, supporting, caring for etc. take a toll people I love just as much as being ill does on me.

The sacrifices others have made are endless and I want to say THANK YOU! Every thing you do for me no matter how insignificant it may seem is a wonderful blessing to me. I want you to know that I understand that

■Helping those that can’t always help themselves is tiring
■Always being worried and conscious of my needs is mentally exhausting
■Knowing that vacations and family holidays may not be feasible is disappointing
■Absorbing medical expenses or compensating for lost income is worrying
■Accepting that my lifestyle is limited and different from before is heartbreaking
■Knowing you can’t do more for your child/friend/loved one is devastating

Even though it can be difficult in a lot of ways, so many of my friends and family have stepped up and contributed in numerous ways that have truly made a big difference for me.

Though I may not be able to express my appreciation like we once did, your efforts never go unnoticed and are always appreciated.

Because of your efforts and understanding, I am stronger and I will get better.

You all are truly amazing.


An extra special thank you goes out to my wonderful husband who has done and continues to to a million small yet incredibly significant things for me each day and who also steps up in so many enormous ways. I wish things weren't they way the are, but I'm sure glad that I have you by my side. I couldn't fight this fight without you as my coach. I love you.

PS. I hope that my sharing has provided you with information that you can use to keep yourself and you family safe. I don't want any of you to ever truly know what this experience is like.

The glass is half full

I've come to a place with my illness where I have found balance and joy in what I am able to do. One of my previous posts was about all the good things that have happened since I've been sick and how lucky and grateful I am for them. I came across a blog post on facebook. It was posted by a friend. I have no idea who wrote it, but I like what she says about how limitations can be liberating and it reminded me that I'm just fine with where my life has taken me. It's not what I had planned for. However, it has opened up new doors and given me opportunity to know myself better then before. I've always been better at modifying existing ideas then creating my own so instead of trying to restate what she has already said so wonderfully I thought I'd just share the link to her blog.



http://gotlyme.wordpress.com/2010/05/01/liberating-constraints/#more-547

You won't "get it" until you get it and I hope that you don't

It's hard living with a disease that effects my life in so many ways. It's even harder when it seems as though the legitimacy of my my experience is questioned along with the way I handle it. I often feel as though people think I should be doing something different with my life right now or that if they were me they'd go about it in a different way, that somehow they'd be tougher, stronger, more resilient.

I understand this because they aren't in my shoes, they can't possibly know. When viewed from a place of health it is much easier to imagine how hard you would fight if you were sick or tired or ill. The reality of what I experience can not be known by them. The many little struggles and battles that I fight just to be where I am today can never be know by someone who hasn't walked in my shoes. You won't get it until you get it and I hope you don't. I really hope you don't.

I also hope that those who have a loved one with Lyme Disease or any other chronic illness would take the time to try to understand that person's unique journey and trust that at any given time we're all doing our personal best.

Below is a link to a letter written by Elizabeth Chalker who is VERY sick with Lyme Disease. Her pain and suffering is much worse then my own. I have experienced many of the things she speaks about, to a lesser extent, and want to share this letter with you. She expresses her self better then I imagine I can. Please take the time to read it and know that I have come a long way this last year and am always working toward my personal best. I couldn't imagine doing anything less.

http://www.publichealthalert.org/Articles/miscellaneous/Chalker-Understand.htm

A Look Inside

This video helped me to understand what is happening inside my body and why Lyme Disease can cause such a wide variety of symptoms.

Lyme Disease Awareness Month

May is Lyme Disease Awareness month and to participate I will be posting more information then usual about Lyme Disease. I will share both general information and my personal journey. I have two goals in doing this. The first is to educate and share knowledge. If my sharing can help just one person in any way then it will be worth it. I especially hope that this information will be useful to you so that you can protect yourself and your family from experiencing what I have been through, rephrase, what I am experiencing. The second goal I have is really more of a hope. I hope that sharing my story in will increase your understanding of what is happening for me and how it affects my life including my relationship with you.

I do not intend to complain or drone on about how bad my situation is. I have come to a place where I have accepted, for the most part, what is happening and I'm simply trying to make the best of an unfortunate situation. I also understand that my experience with Lyme is nothing compared to the pain and suffering many others deal with on a daily basis.

I just want to practice my love of education and participate in spreading awareness about Lyme Disease. Please understand that some of the information I share may be considered controversial. I'm not interested in arguing with anyone or debating my experience. I am however, willing to talk with you, answer your questions, and try to explain what I can. I just want to share what I have learned and I hope you will be able to see that it comes from a place of concern and caring. If I said nothing and someday one of you became sick with Lyme I would regret not sharing what I can. If I had really understood more about Lyme I might have gone to see a doctor much sooner and things might be different today.

To kick off Lyme Awareness Month I'd like to share this video from you tube. It gives a general overview of Lyme Disease. Thanks For watching and I encourage you to spread the word this month. I hope you have a happy and healthy May and enjoy the wonderful weather that is sure to come.

Thanks for your time, love, patience, and understanding. I love you all.