This disease is a painful one. It is a rough cycle everyday of waking up in extreme pain. Throughout the day the pain eases and I loose what I call the "tin man" feeling. By night time I am feeling better, I am moving normal, feeling better than I have all day, just in time to go to bed and do it all over again. Some nights I honestly stay up panicking that I will soon feel that pain when I wake up, I beg Ted to not turn off the light or to watch one more TV show with me. But this is our reality. I need to get use to it...but it is SO hard!
(me in the morning...)
If I stopped taking it for an extended amount of time (weeks) I would get extremely ill, I know this logically, but emotionally it is so tough! I look at the little white pill and dread taking it. But I am so lucky to have it! This is the push and pull of my emotions right now. I am lucky to have amazing doctors, amazing medications, and amazing friends and family that support me.
But I also feel this want, almost a need to have the energy of a normal person. To be able to go out and do errands and grocery shop and then not be forced to rest the following 2 days making up for my outing. It sounds so ungrateful, but some days I just want to be normal. I want to have a snotty 3 year old begging me to take them to the park. I want to get a phone call from a friend and be able to rush to help them or meet them for lunch. I want to feel good every night when Ted comes home. I want to be able to go on a date whenever I want and not have to pack a purse full of pills. Some days I just seem to want it all.
But then I remember that my trials and my illness have made me me. I wouldn't trade that for anything. It has made me know without a shadow of a doubt I married the most amazing sensitive loving man who will never leave my side no matter how many times he has to bath me, put on my clothes or do my hair. It has made me appreciate trips to the grocery store, making the bed, being able to do laundry, getting the mail. The small things in life have become so real and amazing to me that I wouldn't trade this journey for anything. But that doesn't mean I don't struggle, or that I don't have a good cry here and there, it doesn't mean that everything is alway perfect and that Ted and I never fight. We fight. We struggle. But it is that struggling that is making this life that much sweeter.