Caught in the disease once again

Saturday January 24, 2009

I hate Lupus. I hurt all over. It's been a really bad week with pain and depression. They are related. The pain keeps me from doing what I want to do and the depression hits when I feel so useless and unable to act in a way that allows me to control my life. I had to cancel coffee with friends and that is really hard except when I feel like this I also don't want to be with anyone. I wish I could get myself out of this depression. I don't seem to be able to. And I hate it. I want to have enough will power to overcome the depression and do things that I love to do. I also believe that the pain (osteoarthritis and fibromyalsia) should be something I can do something about. I walk every day. I'm doing stretching DVD's several times a week (trying to come back after 8 chest surgeries and 2 open abdominal surgeries). The stretching is exhausting. And somehow I don't think it should be.

I've been writing about how I am not my Lupus. It's so much harder to feel that when my body feels captive to it's manifestations. I'm in remission. But I still hurt so bad. I don't want this to be a whiny entry. I want to cry. Crying is good. I know what is needed at this point - total and complete surrender to how helpless I am in the face of Lupus. Here come the tears. Helpless - doesn't mean I can't do things for myself - helpless means that there really is nothing I can do when I am taking my meds, getting my exercise and getting rest and the pain and exhaustion are still in charge. I have to admit one more time that I am truly powerless over the pain, the depression and the frustration; that for now the best I can do is acknowledge how much I hurt; to admit to how depressed I am and to try and take the next step that will send me on a path that might lead to some joy or satisfaction. My first step was to walk my puppy. He brings me great joy. It's raining and I still went walking. My next step was to write rather than go to bed. I want to go to bed. But that won't help anything really. Sometimes I do need to go to bed and wallow in self pity for awhile. But I can't do that for too long because it is so destructive. I hate it when people tell me to be grateful because there's always someone who's worse off than me. It's true. I am really lucky to be alive - Lupus did almost take me last year. I have arms and legs. I am not paralyzed. My body responds to my commands. I don't have cancer. That's what I do. I list all the things I am grateful for not having. It helps somehow.

So here I am left to face the day - it's only 9:00am. My husband is off with his sports car for the morning and I am left to me. What I choose to do next will impact the whole morning. This is true at every juncture where I have a choice of what to do. Will I give in, much different than surrender, to my fatigue and pain and sleep or watch TV? Or will I decide to do one of my fun activities that are available to me. I could sew; scrapbook; finish a gift for my daughter; clean out my closet; the list goes on.

I don't feel as much despair as I did when I sat down to write. Surrender really works. And when you've really learned how to emotionally surrender, it doesn't take hours for my mood to shift - it can happen quickly - just by writing this blog. What helps your emotions shift? It's so important to know what works for me. Because then I am not a victim, I am a survivor. Being a survivor gives me choices. Being a victim leaves me destined to repeat patterns that only bring me down.

Give me enough grace today to be kind to myself when I am angry, frustrated or limited by Lupus. Let me treat myself as I would my own child - with love, concern, help and hope.