She was unable to understand that every choice I make, everything I do is influenced by my illness. Most people drink water because they are thirsty. I do my best to drink as close to a gallon of water each day of my life; not because I'm thirsty, but because it's what is necessary to prevent pain. Failing to do so on a regular basis can have painful and long lasting consequences.
If I fail to get the proper amount of sleep; if I fail to eat proper and balanced meals; if I fail to keep my stress under control; if I walk into a cold room or allow myself to become chilled...the consequences to any one an all of these can be painful and hurl me into the hospital.
I have to think about what the environment might be like everywhere I go and be prepared accordingly. Everything I do, I have to consider how that action may impact my health or cause me pain. Every single day of my life, I have to work at staying alive. There is no reprieve from that. It is a monkey that is always on my back.
It's important for friends and family to try to understand that your loved one's life is impacted, every moment of their life, by Sickle Cell. Just because they are out of the hospital or not in pain at the moment, it doesn't mean they are worry free. It takes constant vigilance for a Sickle Cell patient to stay out of the hospital and ward off a pain crisis. And even with that constant vigilance, the pain comes anyway, as do hospitalizations.
Friends and family of Sickle Cell patients must be understanding and forgiving people. And we as patients, must likewise be forgiving and understanding of others.
It's not my intention that this post come off as a rant. My intention is awareness. Family and friends must be aware of the weight that is always on our shoulders.
No comments:
Post a Comment