So, I know I haven't yet fully discussed the nature of my disease. I will get to that.
For the past five years I have been sick EVERY DAY. I may have a few okay - good days sporadically. While most people are healthy the majority of the days of the year, and sick every so often.....The opposite is true for me. I am sick the majority of the days of the year, if not all. I have learned to deal with chronic pain and fatigue. It is now a part of my life. Some days, I am in so much pain that I go insane. If that is the case, to the hospital I go. At one point, I was hospitalized at least every two months or so. Not this summer but the one prior, I was in the hospital almost the entire summer, on and off. Other days, the pain is constant, but tolerable. I've learned that I don't have a choice but to deal with it.
When dealing with chronic pain, it is inevitable that sleeping is challenging. I may quickly fall asleep, but I cannot stay asleep. Sometimes, however, I cannot fall asleep until 6am. When this becomes recurrent, I begin to sleep during the day and stay awake all night. It is a combination of isolating and also fun. You see, night time is sometimes when I feel my best. I can spend literally all day trying to rest up, take meds, etc. in order to feel well. It may take all day, and it may not happen at all. But when you all are likely getting ready for bed, I am getting ready to read, write, watch tv, or do anything else to keep me occupied. It is quite difficult. It gets pretty lonely. I want to talk to people, but everyone is asleep. I used to be quite talkative, had plenty of friends whom I went out with and spent time with. I now am alone all day long. I have the company of my beloved dog, Bella, and my cat, Chase. I live with my mother, so she works hard all day. It's definitely tough to be alone all day when I am an innately social being. I crave social contact. However, this disease is beginning to change that. I now get anxious to go out. I definitely do get out, when I feel up to it. But for the majority of the day, I spend it in the house. I am afraid that if I am out and start to feel very ill, that I will get stuck somewhere and won't be able to get help.
You may ask, what happens that you don't feel that well? Well, I will get into symptom details at a later time, but my throat hurts every day. It feels like I have strep throat all the time. I have migraines, joint pain, arthritis in my neck, and chronic fatigue. I used to be very physically active, running 5 miles a day, hiking, mountain biking, yoga classes, and other things. I am now lucky if I can walk my dog around the block without feeling like I am going to pass out. Qutie a lifestyle change. I may feel okay one minute, but then feel so awful the next. So bad that I have to sit down or hold onto something while I stand/walk. It's embarassing at times. If I am leaning down to look at something at a store, it is difficult to get up because my joint pain is that intense. People look at me like I have three heads. I just look at them like "What, do you have a problem?" No, I really don't do that. But sometimes I feel like it.
Anyway, insomnia is not exactly a symptom of Behcet's, but it's a secondary symptom. The many medications that I take can also affect my sleep cycle. When it's quiet at night, I spend time ruminating about how my life used to be. I know this is not a good idea, as it inevitably leads to depressive feelings such as sadness and hoplessness. I think of how happy and energetic and full of life I was. I smiled all the time. I loved interacting with people. I enjoyed everything about my life. I was super passionate about my career, and invested so much time and energy into it. I want that life back. I want to feel worthy of something. I feel worthless, unlovable, bitter. I don't want to feel this way. It's so hard to watch friends get engaged, married, have kids, successful careers. I am very happy for my friends, don't get me wrong. But at the same time, I always wonder....will any of this happen for me? Or am I doomed to live a life where chronic pain and illness rule my life? Hard question to answer. This disease is so unpredictable, making it difficult to make plans or get a job. I haven't worked since I graduated in 2008. I miss my job terribly. I never thought that once I graduated, this would be my life.
Do you ever feel like your life is not on track with what you imagined? Is there something holding you back? If so, is it something you can control, or something that you have to just learn to cope with? Please share if you feel comfortable.
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