It has been a hard, hard week. The fatigue is unreal. I am neglecting my kids, rather it is really hard to be around them right now because it is sensory overload and my body hurts so much that I can barely touch my babies. I have been letting them watch too much TV lately, as I am anchored to the couch, because I cannot move to do anything else. I want so much to play with my own children and I have never been able to really do that since they were born. At least the kids are somewhat distracted by their TV surrogate mama so that they don't focus on me being so sick and scary looking/acting. I am consumed with what is happening to us. I am consumed with cyclones of rage, fear, and bewilderment. I spend a lot of my days, when I am couch/bed bound trying to research Lymes and treatments and any little thing I can get my hands on to try to get us an escape route out of this muck and Lyme mire but there is none, just more possible waiting horrors for me to panic about.
Just got the green light to restart the baby on abx, and after just one dose of ceftin her bowels are a wreck. She has had a bowel movement every couple hours and lots of bad gas. She cries owie and cries for lotion at every diaper change. Tonight is going to suck as I doubt she will be able to sleep and will just cry all night long just like she did when we introduced abx the first time. Right now she is curled in a blanket on the couch looking wiped out. My almost 2 year old, who should be buzzing around the house like a bee, is just lying there looking at me with those big hopeful eyes of hers.
I want to be the mother I know I can be, could have been, if it weren't for this illness. These last 3 years I have watched my children slide through their baby-hood in a distant fog. I want so much for the time to stop so I can just relish every cool and new thing they do and learn. I feel so little joy in my life, and it is hard to even feel it with my children. It is such a horrible thing to want this connection with my children and not have the energy for it that it shames me to the bottom of my soul. I love them so much but I have so little to give them right now, especially now that I have started treatment and am sick 1/2 the time. I am scared. I am scared. I am scared. It doesn't matter how much I say it, it never goes away. I have stopped being a wife, a mother, a friend, a daughter, a co-worker, a productive person....I have lost me. I want me back and sometimes I get a glimpse of the me I was, but these peeks are brief and far and few between. If I could rip my own heart out I probably would try, if nothing else but to squeeze some life back into it.
So for now I will sit on the couch and watch my children play and beg for my attention and try not to cry about the total waste of it all.
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