Exactly 6 months since I have started my treatment. So much has changed. Things that were at first scary to me became a constant in my life. I am in a wheelchair because I am too weak, too sore and my joints are too swollen for me to walk. On my good days I walk with a cane. At the same time I’ve made so much progress. I also had time to face my previous fears and adopted to my new life; however my old fears are already replaced by the new ones. Here I am at Panera Bread (again) tears traveling down my cheeks (check out my first trip to Panera bread here). A single question a friend asked me brought all the little particles of doubt, fear, frustration together in the form of tears and all them wants to come out of my eyes at the same time.Ironically all this happened while I was eating my favorite sesame bagel and drinking my hot tea. (In case you are wondering the significance of that dual, check out these pictures)
Why am I overwhelmed even though I’ve made so much progress you might ask? Well during this time, my children have been tested. One by one. Started their medications. We have been through rage, fatigue, headaches, stomach aches, ringing in the ears, sore throats, confusion, comprehension issues, tears, having to give up our favorite foods, taking tons of supplements (some of which are nasty), joint pains, ringing in the ears, furstration and yet somehow we made it through the summer. Then the schools started. I got worse. My 7 year old got worse. My 5 year old too young to comprehend what is happening to him. Adding my 12 year old to the sick chart was the last draw I think.
A few days into school my 12 year old started herxing really hard, after taking one single pill – just like I did. He was not able to move, he was so weak and so sore. He couldn’t even lift his arms. It took 5 days before he was able to walk again. He begged me to not send him to school. Concentrating at school, comprehending what is being taught, even walking around at school became very difficult for him. He was already experiencing these problems but they were subtle. Seeing him go through what I’ve gone through brought all my fears together. Am I going nowhere? Will he end up bedridden and/or in a wheelchair like me? What about my daughter? She is already asking for a cane or a wheelchair at times. How are they going to get through school like this? So yes I am crying at Panera Bread one more time, while people are staring at me and wondering why there is a woman crying. I am crying because there is nothing else I can do about it.
I know how you feel crying in public. I got a text from my ‘best friend’ today and she said “When will I be seeing you?” She only texts me once a month even though I tweet constantly about being ill, she never says a word. In May she was supposed to take me to lunch and then to her sister’s party, but she never texted me back saying when she was coming. Then I later saw pictures of her and her boyfriend at the party. Completely blew me off, now I feel as I should return the favor each time because I have the right, I am sick. I just don’t want to waste my time with fake friends, what a better time to weave them out then right now, right?
Lauren, I have gone through a phase where I had to understand where I stood in my friends’ life. Trust of me there are some that gotta go but there are also some they pull back when you are sick. It is not because they do not love you, it is because they do not know what to do. They still want to do the things they do in their regular day, then they feel guilty you are not in it. That causes them to pull back. Explaining to the important friends what your expectations are and also explaining how you don’t want them to do things for them, you really need their existence in your life; they might change their attitude. You need to differentiate which relationships are worth fighting for and which ones are not. People in general do not comprehend the importance of the social interaction aspect of illness. Being sick is already bad as it is, being alone on top is worse. So ask your friends to text you, IM you, email you call you even if they are not going to stop by or take you places. That is asking less from them and still helpful to your emotional well being. Remember, as lymeys we have to grow thick skins.
Good luck!