I was sitting here wondering how to write what I wanted to without seeming like an ungrateful whiner. Lack of sleep, misunderstanding, and down-right miserableness prevented me from coming up with a good idea.
I hurt. I am told this is what they (whoever "they" is…) call a flare-up, or episode, or some other such name that really doesn't reflect what happens during these times. Mind-boggling, life-changing, depression-producing, uncontrollable wreck would be more fitting.
I overdid things yesterday. And the day before. Which doesn't take much right now. Cooking, doing a couple of loads of laundry, going for a ride in the truck, vacuuming the floor. Life. The cost is high, and my husband can't seem to get understand that I every step, every moment, is costly right now. He and my children are unable to give support in any real way, because they can't seem to handle admitting I'm ill and not getting better. The physical therapist comes in today, and my nurse will be here Wednesday. They are my "support group," but they can't do the dishes or answer the phone at 2:00 am when I can't get out of the chair I'm in whilst I'm NOT sleeping.
This week I go to yet another doctor for some testing to find out why I can't breathe and I'm walking around choking all the time. Something is wrong with my esophagus(sp?) and, frankly, at this point I don't even want to know, I just want to breathe and stop coughing because the pain nigh on makes me pass out. I wanted to believe it was my asthma, and something like a med change and not smoking would make it go away. Well…
A year ago last month, I was working for the first time in 10 yrs, shopping, going to dinner, and going up and down three flight of stairs twice a day, at least, everyday. One night, my wolfie-dog, Lakota, drug me down a flight of stairs into the fog of 911, respiratory failure, and intensive care. I died in the trauma room - yup, after death experience and all! - was resuscitated, and began the process of slowing losing my whole life. Everything changed, and nothing I've done since then seems to slow the process or get me any closer to a functional life.
Today, I don't leave the house much. All the old mental issues that I clawed my way out from under have come back full force. In the time between then and now, I was also assaulted, had my very first broken bone at age 47, and crashed full force into the ghost from the past. I ended up in jail for a week too. I'm no criminal, but a clerk failing to record or remember a call that I would not be returning a rental car on time caught up with me when I called 911 for someone and found that I had been charged with auto theft. Jail cost me my long hair and the last shred of normalcy left.
I learned that my pulmonary function was that of an 83 yr old, and the heart and lungs are just plain tired out. Who knows why, something vague like undiagnosed scarlet fever as a child? I went on oxygen and more meds for the breathing problems, and started a round of lung infection that comes and goes like the tide. I started violently coughing, aspirating it seems, at all hours of the night and day. They don't know what is causing that. I'm having a swallow test of some sort Friday. The generalized pain I've had for years intensified until it took control what was left of my life. They call that fibromyalgia. My bi-polar meds stopped working, and the doctors started changing meds regularly, with all the craziness and side effects that brings. If I could move or breathe, I'd be in the middle of a manic episode. Mania is NOT fun under those conditions. It looks and acts like an uncontrollable old shrew.
I can't breathe, move, or get out of the house much. I've developed and allergy to the sun. Pretty much wipes out gardening. Due to the nebulizer and the rawness from choking, I can hardly taste food. I can eat it though; I stopped buying clothes that fit at size 18.
If did what I felt like doing, I'd get drunk, curl up as tight as I could, and wake up only to drink enough to pass out.
Of course I can't do that. God decided I needed to come back to life on that trauma table. He said "Stay," though I still can't figure out why. I try to remember to be grateful for life, and when I'm not, I pretend to be. "Fake it till you make it." That's me, faking it. Breathe through the pain. When I can breathe.
I think this is the first time I've "told my story." The whole ball of wax in one (non)breath. The people I love can't hear, don't have the time or inclination to accept it. They don't visit anymore when I go to the hospital. No one goes with me to the doctor or outpatient when they cram things into me or make me swallow crappy stuff. That would make it all too real for them, I guess.
Telling it doesn't seem to have made me feel better. Yet. I'm going to reserve judgment for a while, and keep writing. Writing and art were the tools that saved me from mental illness and anxiety for years before all this happened. I want to try again. I'm afraid I've lost the ability to paint or draw, and I don't have the courage to try again right now. Maybe when this "episode" of fibro subsides. We'll see.
An unwritten story, an unfinished story, hands that won't working anymore right now, that is the only ending I can find for this diatribe. GBY
LLL
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