I woke up this morning to unimaginable pain. Since I cannot move from my bed yet, I thought I would write about it. There are a few seconds that I cherish. As I am waking up and still half in the dreamworld and half in the awake world. I open my eyes and my body and my mind are still thinking of the dream. My eyes can see the sun through the blinds. I feel slightly confused, as I always do when I wake up, as to where I actually am. Am I back home in my first bed or at home in my adult bed. There are just some moments where I don’t actually feel my body…and then I do.
My spine hurts. My hips hurt. My sacrum hurts. I know this as I roll over. My shoulders hurt to even push myself to one side. My shin bones feel broken as do all of my toe joints and finger joints. I know once I start moving, some of this will loosen. But right now typing these letters, the keys feel like sharp pokers traveling down each finger and into each joint. I lift my head and my neck cramps forcing me to lay back down at which point my arm buckles and I know my shoulder/arm will be of no use today. I wiggle my toes so that when I step off this bed it won’t feel like I am stepping on glass. Each of my ribs feel as if they have been punched. Nerve pain is radiating from my wrist making my thumb numb. Typing is awkward with one thumb. My right quad, the strong one is feeling weak. It needs to buck up because it carries the weight for two legs. I can’t use my wheelchair to cook because the counters are to high and my arms can’t lift that way. So I need to be able to stand some. I need to be able to sit some but my quads are too weak to sit without the help of my arms, but my shoulder is not feeling like it wants to work. Today will be a hard day. There is no way around it. There is no seeing the positive. There is putting one painful foot in front of the other and trying to keep my agony partially to myself so my family doesn’t have to live listening to a suffering person. No one wants to live with someone like that. They know I hurt. There is no need to share all the details every day. But the details are felt by every square inch of my body.
Is it the Lyme disease? I have no idea. The Lyme herbals from the cowden protocol I have been using 3 years now. I switched to something new so that my body didn’t become resistant to that treatment and everything is worse. Which tells me the herbs only held the real problem at bay and now it is running rampant in my body yet again. The doctor confirmed this. It just upsets me too much to even go there. Years of antibiotics and suffering through the side affects. Years of these herbs and suffering financially because of their cost. None of lyme treatment is cheap. Get on the lyme boards and you will find 10s of thousands who nolonger afford treatment and have found themselves broke no closer to getting well than the day they started. But I’m not giving up. I will keep trying different options. Is this causing my pain. I don’t know. I’ve had pain for 12 years now and I never know what is causing what. These are the kind of days when God help the person who asks “well have you tried massage?” And I can’t decide if I want to cry at their ignorance or slap their face for their complete disregard and inability to have ever listened to my list of a thousand things I have tried.
Is it the muscle disease? My doctor told me I was in some catabolic state. My muscles are wasting and atrophying and she has never seen me look so bad. Yep, I know, I look at myself every day in the mirror and these things do not go unnoticed. So we sent my blood off to the ONLY doctor who has stuck by this discovery aspect of my disease. What a guy! All the way in England he works on my case, discovers a new gene, requests my blood, and we send it away. If he finds the gene causing this disease, it will give me peace of mind. Ahhhh I finally know what this elusive gene is. But will it give me a treatment or cure? I have no idea.
Whatever has happened in my body is deteriorating my bones at the same speed as my muscles. No one knows why. There is no treatment right now tested and approved for a 45 year old with 89 year old bones. Osteoporosis is not supposed to hurt unless you have fractures. No one told my bones that. Every one of them hurt so much that I feel bones I didn’t even know I had. That doctors say there is yet another reason for the bone pain. They don’t quite know why.
So I come home from these appointments thinking FUCK! I am so FUCKED!!!!! I go to sleep. I wake up 3 hours later in pain. I scramble for something in my medicine cabinet that can help my pain subside. I don’t have much. No pain pills for me. Not much of anything for me in the medication world. I have allergic reactions to everything. So I get a bowl of cereal and try to sleep another three hours. “You can’t get better ifyou don’t sleep,” the doctors say. Really? Then make me sleep somehow someway!!!!!stop taking my blood and ordering tests that require more toxins put into my body and more money charged to my insurance to just appease me to then have our bullshit insurance say they don’t cover that medication anyway. You thinking living in the US we have great healthcare. Pft. When it is convenient for them we have good health care. You have to go in being rich or go out being broke in this system. If you have Lyme disease and want to be better or get better then you better be a movie star able to travel to another country becasue we aren’t getting better here.
So now I know I must get up. I have to take care of my daughter. I don’t have a job. “Must be nice to nap.” They say. Yeah, I don’t nap. I painfully go through the motions of taking care of this house and my daughter until the sun goes down and I know I can get back into bed. I would switch with any of those condescending assholes any day of the week and go to work at a “real” job.
But this is just my morning foul/pain moment. I won’t stay like this all day. How could anyone. I will look out my window and see the owl. I will look out the front and see my blooming mimosa tree. I will see my daughter and feel grateful she is with me. I will see my husband and feel grateful I am loved. And my day will begin.