July 30, 2012
Oh sleep…how I miss you! I wish I could say that my life was like many others…wake up, go to work, come home, spend time with the family and go to sleep. I think about the days of my past. The joy I had doing normal day activities…the rush I used to get from going to work and being productive. I know my life is not the same as it was. I am still trying to deal with the fact that I am fully disabled at the age of 29 and reading over the doctors words of “her condition has continued to slowly deteriorate over the last several months” is an honest and painful statement to read. And I feel words are hard to find at times. Someone asks me what I do. How should I answer such a question? And when someone learns of my disease, they ask me what I do all day. I find that I never have the answer they are looking for. Because I may look healthy, it is hard for me to explain…I live each day as it comes.
I spend most of my time stuck in bed…key word…stuck. And I am grateful for the days when I can clean, cook, shop and even sleep. And when I am really having a good day, I try to visit with the people I care about. Some days talking on the phone is even too much for me. Or I have days where I can push myself and do some fun activities but then I tend to spend two or more days in pain or worn down from overdoing it. It leaves me feeling guilty because my days are no longer reliable and it makes it hard to make plans. But when I say I’m stuck in bed many people saying things like, “It must be nice not having to go to work.” Or “Wow, how do you live like that?” I guess I never really know what to say to such responses because I’m sure even talking about the illness in the first place is a bit of a downer to anyone. But it is not easy trying to explain that I do not enjoy being stuck in bed. I would rather be working. I would rather have a social life. I would rather be able to have kids one day and raise a family. I would rather be doing something productive. I would rather go places and not have to be worrying about where the closest hospital is or if I have enough snacks to cover low blood sugars or if it is too hot because my blood pressure may drop dangerously low. I would rather not have to worry if getting out of bed is going to cause me to be too weak and dizzy to stand. I would rather not have to try to hide my pain and fear from the rest of the world. And as far as living this way…this is my life now. I wake up and take each day as it comes. And this is not something I asked for. This is not something I enjoy. But I also don’t want people to feel sorry for me. I don’t want to be the reason for other people’s sadness. And I really I don’t want to be judged based on my illness. The truth is, I do think about my illness everyday, because I have many attacks that happen throughout the day. It is frightning and I deal with it as it happens and then I get over it and move on. But I also think I do a good job trying to live to the fullest in the moments that I am well enough too. I smile often, I laugh, I joke about things and I still see the simple joys in life. And the truth is…people may ask for advice, they may think I may have the answers…but I am just one person…going through this maze of my own. I get lost trying to find my own answers at times. I need guidance just as much as the next person. But I’m always glad to help others. It makes me feel good to connect with others. This is the reason why I am sharing my story..my words. But I will be the first to say…I don’t have all the answers. I see too many people suffering. I’ve heard too many stories – some similar to mine. Some that are even far worse than mine. My heart breaks! And I wish I could say things like it will get easier and there is a simple fix. But life isn’t always meant to be easy, it has never been perfect and it isn’t always fair. But I do know that even on the worst days…there are still reasons to fight and to be happy, to try to live without pain. Reasons to smile and love and laugh. Words may be hard to find…in many situations…but sometimes just being there for each other…those are words enough. Sometimes just a smile, a hug or a listening ear or enough to let us know that even though things are hard…we are not alone.