When I wake up each day it is not like how I woke for years or how anyone else wakes. Before I wake my brain realizes my body is in pain, the anxiety begins before I open my eyes, I am sure of this. Once I am stirring, it comes to me what hurts. I adjust to move so the pain doesn’t worsen. Many days I cant even move for a few minutes, a few days I am so paralyzed I can only lay there and cry. I have resolved the morning tears, well, lessened them. I am taking more meds at night. I hate it but it allows me to get more than 2 hrs sleep at a time, even though I wake with a grogginess that lasts for hours.

Once up I have to stay on schedule, eat within the hour, lately I have gone back to caffeine, a cup of coffee in the morning. If I have ANY plans that day I have to have more. I take a multitude of supplements, all to help me function in whatever capacity that day. They make a huge difference in how I feel that day..I would be in bed all day if I didn’t take them plus the meds prescribed. Whatever hurts usually gets some heat, because just standing and making breakfast has worn me out. There is always some kind of confusion like taking the wrong thing out of the refrigerator, or dropping things continually, or forgetting if I added the right ingredients to what I am making. If I have to go anywhere or do anything taking a shower, getting dressed and ready usually wipes me out. When I was working I could barely walk to the car after just breakfast and getting ready.

When you live your life “looking fine” but feeling so awful all you want to do is go back to bed all day it gets to you. It wears you out. The pain and fatigue will drag you down and make you realize how many things you took for granted when you could do all the ‘normal’ things that the rest of the world does. No one could possibly understand unless they ARE the person dealing with it. Knowing that this is your life, pain, anxiety, frustration, sheer exhaustion, not to mention you cant make plans to do anything, your friends don’t want to come around and deal with it, your family is supportive to some extent but not around to help. Your husband has had it, he is so stressed out from listening to you, seeing you, living with someone who lives with chronic pain and fatigue. He only hangs around out of obligation..you would have no insurance if it weren’t for him. You would have no place to live. You would have no money. He is the last string of your old life, that used to be full of energy, life, walking, hiking, working, feeling strong, having any self assurance. It is gone..the string is wearing thin. It will snap..it is a matter of time.

When did I become so dependent..when I got sick. When did I become so unhappy..when I got sick. I am not ready to declare this is my life. I am not ready to embrace that I have some chronic illness and wear purple shirts with purple ribbons and shout it from the rooftops. I just want it all to go away, I want this horrid nightmare to be over. none of this has a silver lining, none of it has happy outcomes. You just get used to being disabled, used to relying on people when you detest doing that, used to asking for help..something I never had to do. Well, I am not used to it, I am not accepting, I am not embracing this. And there is where the problem lies.

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