Saturday, December 11, 2010

Baby's Day Out

     Chronic fatigue is not for sissies. I've come to terms with the fact that I have it and it's probably never going to go away and I have to deal with the frustration of wanting to do do do and just not having the energy.  Add to that an anxiety disorder and throw in a wee bit of agoraphobia and it's a potent cocktail that can be overwhelming to this social butterfly (er..bumblebee) who really wants to do and see and buzz around more than her body allows.

When you're tired all the time people think you're lazy. They see you getting up late or not at all and make comments or recommend vitamins or exercise routines or diets. I take prescription vitamins.  I wish I could do a circuit at the gym and am jealous of people who can walk around the corner and I dieted so successfully I ended up with a few hospital visits for severe malnutrition at 350 lbs. I also lost my hair for a  long time and stopped producing blood temporarily and remain chronically anemic.

  I think I can safely say I enthusiastically went down a lot of long windy roads with many hairpin turns and came out of tunnels exhausted but as one of my friends always says, there are no failures, only steps to success so at this rate I'm thinking I must be pretty close. I'm thankful I'm alive. I'm blessed.

Today was a good day. Spouse was excited to get a small bonus so he went off with his buddy to buy a new gadget and I dragged myself out of bed determined to at least get to the nail salon. I am a very determined baby but I don't know if my body will be as agreeable as my will and if those two have an uneasy truce I still don't know until I'm dressed and ready to walk out the door if my mind is going to start saying, 'No, don't go out, what if, what if what if." 

"What if" can mean anything as in 'what if I break down and my cell phone can't get a signal or I can't remember or find the number to the emergency service company?", or "What if I get so tired that I can't sit down and I get disoriented or overheat or throw up or pass out?" the possibilities and combinations of them and fears are endless.

I don't want to live my life in fear. I resent it. I'm not a coward. It's hard for me to tell people about these things about me because I don't want anyone's goddamn pity or to be treated like a fragile china doll. I'm pretty tough, a little damaged but not broken.

So encouraged by my mind and body being pretty much in agreement, I made for the garage door and walked outside. It was cold but bright and crisp, a beautiful day. I was happy I made it today.  I got into my car, changed my CD to something happy, put my sunglasses on and went on my merry way.

I've been working on a self-help series that talks a lot about attitude. That most of how we think is actually a defensive reaction to previous hurts and that we should take note of how we judge others and that it's indicative of how harshly we judge ourselves. I've been taking that to heart lately and remembering that I can't control much of anything except how I behave and react and I have to stop myself when I try because it's futile and frustrating.

Today when I hit the road,  I looked at everyone wondering how they were spending their holidays and if they were on a daily routine like me or shopping for Christmas. It's not my nature to look at someone and discount their appearance (one notable exception was a beautiful girl who looked very sick and immediately concerned me)because there's an emptiness there..what you put out you get back more in return and I really want to be a loving person who projects positivity.

I couldn't find a space at Walmart no matter how patient I was driving around and around.....I have a handicapped placard but there weren't any spaces in the overflow lots either so after about a half hour I drove off, smiling and thinking at least I got some fresh air. Normally, this is when the agoraphobia kicks in especially following a disappointment with my plans and I made immediately for home but as I waited at a stop sign and let a guy in a scooter pass in front of me, I smiled at him and he smiled back. I let someone else go too and we smiled at each other also and I forgot about getting home so fast.

I stopped at Dunkin Donuts for some white hot chocolate and they were out of my flatbread sandwich and.... it was okay. The girl at the window was really crabby and I asked her if she was having a crappy day and she stopped and smiled and said, "Yeah" and I said, 'It'll be okay. Have a nice holiday and thanks."  It wasn't profound or witty but I'd been thinking we can spread happiness or spread negativity and even if I have no energy I do have a mouth and can say, "It's okay", and "Yes, please", and look someone in the eye and say, "Hey, thanks a lot", and as an added bonus I feel good too. I don't really know if it will be okay for her, honestly but sometimes just saying that is reaching across a lonely divide.

I stopped at the butcher shop for the first time in months to get a few groceries and waited for the guy in the space next to me to get into his truck. He looked up at me probably expecting me to roll my eyes because I had to wait but I smiled and shrugged and he waved and drove off. I walked into the store and took a deep breath. It had been a while. The anxiety started to flicker in my chest and tighten.

The owner, a guy I only knew from brief chats while he'd weigh my veal chops or chicken cutlets walked over to me and asked me where I'd been and we picked up as if I'd only been there yesterday. It was nice and easy and even when some other customer started following me around the store telling me how nice I smelled, I was still okay. I stopped and browsed some canned goods (pickled okra anyone?) which was something I hadn't done in months and bought a few treats for Spouse who'd been nice enough to finish decorating the tree when I got too tired to continue.

I often compare myself to a baby not because I'm cute and certainly not over my size, but because babies know no boundaries or limits. They want and do but don't understand why they can't and keep trying until they do accomplish or someone comes along and helps them a little until they can figure it out for themselves. The most simple things bring them the most joy and they don't look around and think, "I shouldn't, I won't, I can't"--they don't know they can't. They also greet everything in life with wonder and enthusiasm and they're fresh and new and haven't yet experienced everything life has to offer and aren't jaded to its disappointments either and I think that's a good attitude to have. A baby never thinks, "Well, I can't run. I can't do anything" and so lies down and dies and neither should I. Everyday might be a struggle but if a baby can do it, how could this baby girl do any less?


  1. Fibromyalgia & degenerative disc disease... I know your fear when going out, alone. Unfortunately, my fear overwhelms me. I will not go shopping alone. I will run minor errands that require a lot of sitting & waiting, alone, though. I prefer to do those alone... I really don't like anyone asking me "are we ready to go, yet?" over & over.
    I WANT to see the world. I WANT to enjoy outtings like I used to... But, in addition to wearing myself out, I also have to deal with the pain of my exertions for DAYS. And then I feel bad, emotionally... And the cycle continues.
    I wish I was more like you.

  2. Lainey you are an inspiration, what a well written blog.