Monday, July 12, 2010

Written July 1, 2010

Throughout my life I have had my fair share of struggles and strife. For the most part I think I have handled my life's difficulties with as much strength, grace, and dignity as possible. Almost a year ago I was diagnosed with Fibromyalgia. I accepted that much the way I try to accept everything. Okay, this sucks, but there are medications we can try. I can make changes in my personal life to help, and this isn't the end of the world. I can't live in pain forever, right? Honestly anymore I am not so sure that is true. For the last year I have lived with chronic pain. Anyone who has not experienced this cannot possibly understand what that truly means. Every night, when I can fall asleep, I wake up every twenty minutes to an hour because my body aches. It is this odd mixture of a ripping, crushing, grinding pain. That never fully stops. Sometimes is less severe but it is always there. The headache that never fully goes away. The back ache that is always nagging. The feeling like I have weights strapped to my body, especially my shoulders and hips, that is constantly dragging me down. To add to the insult of my bodies rebellion is that I am exhausted. I never feel fully rested. I generally wake up even more sore than when I went to bed. Everyday, day after day. I have started doing yoga, eating healthier, having someone come in and help me with house work, cut back to working part time in an office job that allows me to stay off my feet, having painful deep tissue massages that help my flexibility, and seeing a therapist to talk about my pain and to develop a vocabulary to express my pain to my family and friends in a non-threatening way. I have tried several medications, some of which have really helped, and some that have made things more difficult. I have come to the point where there is no easy answer. When I originally contacted the doctor about my pain I was sure there would be a simple fix. I am coming to the unfortunate realization that there isn't. Sometimes I wonder who that person in the mirror is. The one that has gained twenty pounds. The one that struggles to finish the dishes or climb the stairs without sweating and shaking because of the pain in her body. The one that hesitates to pick up her three year old daughter because she knows she will pay for it over the next few hours. The one who doesn't want a hug from her ten year old son because she is afraid it will hurt and he will know. Who is this person? Could she possibly be me? My nickname used to be the "I got it girl." Whatever it was, don't worry, I'll get it. Somehow this has been transformed into "can you get that for me please?" I hate this. I am not this person, I refused to believe I will feel this way for the rest of my life. What kind of life could that be? What started all this was work this afternoon. I have started a new medication that helps me reach a deeper level of sleep. I have even dreamed for the first time in months. However, this medication drags me down, it makes me tired during the day, scatters my thoughts, and I end up feeling clumsy and heavy. Like it takes even more effort to do simple things then it did when I wasn't getting as much sleep. I have an office job and I work with wonderful people, both of whom have seen me in a severe flare when my pain is at it's worst. Today as I sat counting our daily deposit my vision kept blurring and I kept losing count. My job is very simple and straightforward. I have the experience necessary to make this easy for me and yet I struggle. I could see the looks passing between my two co-workers as to how they could take it away from me and just do it so it could be submitted on time. I was so ashamed and embarrassed. They didn't say or do anything wrong I just knew that they could see me struggling and wanted to help. Dammit I don't need help, this is simple, why can't I just do it? Why can't I make it work? I did finally finish and as I was leaving to drop it off one of my co-workers asked if I wanted them to double check it. I don't know what was worse wanting to say yes and admit what an idiot I felt like or if I was offended that she would doubt me. When I returned I started filing personnel information. I caught myself twice filing something under the wrong name. Again, simple but I couldn't even do that. When I finished filing I moved onto processing the monthly tips. This requires going through our schedule and marking down who worked during a certain period and how much each shift made. I kept losing track of where I was and what I had already done. That is when I finally just laid my head down on the desk and allowed the first tear to fall. I wiped my face, straightened up, and called my therapist. I could feel this darkness sneaking through my soul and stealing all of my ambition and self-worth. My therapist was with a patient and I was told she would return my phone call. I told my co-workers that I had something I had to take care of and left. I drove to an empty parking lot and cried until I felt like I couldn't possibly shed another tear. This isn't me, I am not this person, no matter what the problem in my life I have found a way to deal with it and focus on the positive. In this situation I just can't find the positive anymore. After I came back, trying to be discreet even though everyone knew I had been crying, I cleaned up what I had been doing and put everything away. I was invited to a lunch with my two co-workers and a girl that used to work with us that I think is just wonderful. I was sure if I went I could find that will to just pretend everything was okay. They say if you fake a smile it can actually make you smile for real so it was worth a shot. Honestly, we didn't even make it out of the parking lot before the darkness returned. I couldn't focus on the conversation and even though my companions are lovely people that I was sincerely interested in I couldn't help but think about how broken I was. My person, my body, my soul, they are all broken. I couldn't seem to get past how happy they all seemed. These are my peers, my social equals. They all have struggles and problems of their own but they put a smile on their faces and make the best of everyday. This day, this time I just couldn't. I couldn't smile through my pain, the loneliness of being the only person in the group that knew how much I hurt and how hard I was trying, and how miserably I was failing. We returned to work and I left and came home. I had no intention of telling my family how unhappy I was. I planned on just saying hi, then going upstairs and crying myself into a nap. Shortly after I got home my husband brought me the phone with a worried look on his face. My therapist was on the phone. I pretty much pushed my husband out of the kitchen and shut the door. I laid my head down on my kitchen table and let it all spill out, the ugliness, the hopelessness, the anger, the frustration, and the loneliness all combined to make me feel like there was nothing left of me. Who I was, who I still want and try to be. I am going in to speak with her further in the morning and have a doctors appointment to discuss my newest medication. After getting off the phone I had to try to explain to my husband how I was feeling. You know the expression "still waters run deep?" That is an understatement of my husband. He told me that right now I should just stop working and stop pushing myself so hard. In my mind I was thinking doesn't he know that is who I am? Isn't that part of why he loves and respects me? I understand where he is coming from. Not only is he scared for me now he is afraid that because I am pushing myself I am going to do something truly irreparable. All in all, where does that leave me? How do I pass the days? Sitting in the house afraid to go out because I know it will make me sore? Or continuing on the way I have been, pretending it doesn't hurt and I can still do everything I used to? Which person do I want to be and is there an option in the middle? Right now the only thing I am sure of is that I don't have the answers. I took tomorrow off work and am going to try to do something fun with the kids this weekend but I really just don't know how I am gonna feel. Tomorrow, the day after, the week after, the month after. I just don't know.
We are a military family stationed in Japan and because they can't treat my conditions here we are anticipating new orders sending us to a base that has a pain clinic. I don't know what to think. I don't want to get my hopes up because we are giving up so much to accommodate my medical conditions. What if we get there and they can't help me either? What if I uproot my children, force my husband to change bases, leave all the wonderful friends we've made, and give up the experience of living in a foreign culture that most people will never experience for nothing? I have no answers and I am still searching for my hope and my optimism. I know they are somewhere inside me I am just having a really hard time finding them. You know, the expression,"tomorrow is another day" is one I have used a lot in my life. Now I don't know what tomorrow will bring but my body assures me that I will still be exhausted and in pain. I hate that I feel this way and I think the worst thing about it is the confusion. What do I do? Who am I? Who do I want to be? How much can I do? As of now I am sitting in bed waiting for the answers to come to me. All I can think is that it is going to be a long night.

Update... Mark is watching me like a hawk after some scary experiences including blacking out in the shower. Gavin has been tremendously helpful. I hate to steal this innocence from his childhood but he often helps me up the stairs or when my legs give out. I am trying to compensate by giving him as much freedom as I can. He goes to an awesome youth center that keeps him really busy and when he isn't there he outside playing with his friends. He checks in every hour or so to see if I need anything. Alynna is so smart! She has learned that it is really hard for me to pick her up and to sit next to me instead of on my lap. We are still waiting for orders. They keep saying next week, next week. I really think it would help my motivation and focus to know where we are going and when we will be leaving. In the meantime I am just waiting, my days are blurring together. Mostly it is just pain, guilt, sleeplessness, and more waiting

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