Finally, my feet have touched the floor. Don't get ahead of yourself, Steph - it's not over yet! It has just begun.. Did i break my arm in the middle of the night? No, I couldn't have, who breaks their arm while they sleep? My pain is so horrible and stiff, that it feels as if I have broken something. My first step of the morning, and I am dreding the next to come - I reach to hold onto the side of my chair, then, the side of my door, with my back arched so badly, the thought of standing up straight is making me want to cry. I stay positive, and try everything in my might, not to breakdown and scream. The first few steps are always the hardest, without rhyme or reason - I want to give up.
With the bathroom close in sight, I cannot wait to move on with my morning and try and move past, what I will deal with, again, tomorrow. To most, the toothbrush is nothing to worry about, but to me, it's a weapon. With every ounce of my being, i must brush my teeth, regardless of how badly it hurts. My elbows are cracking, and becoming more and more stiff as I go on. By now, it is time to take my meds, maybe it will eiliviate my pain, even for just a little bit. With every single ounce of my body, aching, i muster up the strength to swollow the bitter taste of my pill. This part of my day, makes me believe that everything will be okay, in just 20 minutes.
What do you rate your pain out of 10? 5 on a good day, 8 on a bad day. I sit at the table, and I can feel my pain, radiate down my back, and into my legs. With the pain, burning so badly, I feel like crying. I don't know what else to do, but go lay on the couch, and wait for this pain to pass. With an electric shock, running right down my spine, even the simplest of movement involving my neck, can make me want to throw up. It is so hard, wondering what life has in store for you. With each minute, different than the next, never knowing what will happen to you, but knowing something will, is so unbelievably hard to handle. Whether I am so tired, from doing absolutely nothing, that I cannot keep my eyes opened for even 5 minutes during the day - daily daytime naps are needed. If I don't take an hour for myself to nap, I am done, for the rest of the day.
By night time, I am so wiped out, that even sleeping is hard. Have you ever been so tired, and drained, that falling asleep is a chore? With my mind in a fog, sleep can sometimes be a struggle - an unwanted struggle. My constant forgetfullness, of words, of actions, and my last name? Yes, I said my last name. It is certainly tough, but I am getting by. By the time the sky has turned dark, and the sun has gone asleep for the night - I am lying in bed, with fingers so swollen they are the size of sausages, unable to wear my rings. Knuckles, so swollen and inflammed that they have now turned red, and are hotter then ever. With my 2nd med of the day, my horrific pains are beginning to show their face. I tuck my body into a fetal position, hoping, praying, that this too... shall pass. With my back so stiff, and in pain, even the thought of standing up, is not concievable. With rashes the size of a football on my leg, little red broken blood vessels all over my body, and purple broken blood vessels under the skin, it has become apparent that my body is no longer what it used to be. I am sometimes ashamed, and hold guilt, of how different my body has changed, but I keep in mind, that one day, things wont always be so hard, and I will learn to accept the disease that is staring at me, face to face. With my ability to drive a car, almost none-existant, again - my independence has yet again, been taken away.
I can feel my nerves, pulsating beneath my skin. With my body in full blown twitching mode, I can't help but wonder if anyone is looking. My stomach, my face, my arms - every nerve imaginable in my body - twitching. Each day is different, and I am learning to work with my disease, not against it. I am not here to complain, but rather, to show all of you, what a day in the life of someone living with this disease is like.
How do I deal with this all, you might ask? I just, do.
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