We all get depressed every now and then if I said I was positive all day, every day that would be a lie. I don't believe you can be human without experiencing some hard days.
As I lay at 4 in the morning tucked into my hospital bed, I can't help but think about some of the things that have been bothering me lately and I have decided to share these thoughts.
Sometimes I sense like my health is not only an inconvenience for me, but for everyone around me. I hate thinking that I want to stay out of the hospital even when I am super sick just so it doesn't interfere with the schedules of the ones I love or put me in a lonely state of mind. I want to attend all of the get togethers my girlfriends have, the elimination dinners, parties for this and that, fundraisers and walks, and even the family reunions. I never want to miss them, but sometimes I can't help it and lately that "sometimes" has been more often than not.
It has gotten to the point that I am no longer asked, invited, or even told about events that people are having because they just assume I am in the hospital and don't want to bother me. I really have no reason why or an explanation other than the feeling that I am letting people down.
By now I am 26 I have done this hospital thing for my whole life, more so over the past 15 years give or take. So my friends and family are "used" to it. The calls stop, the cards drift farther apart, the flowers never get ordered, and visits I can pretty much forget about. I may get a text every so often from someone asking if I am "in or out?" With the normal "feel better miss you" comment. Followed by what is normally nothing else said.
Once people get used to the "normal CF clean outs" of antibiotics and know that you're ok, they don't seem as concerned as they first were the few times after they've met you.
The first few times of hospitalizations and new friends is an interesting experience that I wish would never fade. They seem to worry a little more because they are unaware and curious about your health. Once you are in for the hospital the third time they seem to fall in suit with everyone else.
Sitting in the hospital 24-7 for 14 days or longer alone is the most alone you can ever be.
The medications don't help, they either make you hungry or not eat at all. They make your thoughts race and your heart beat, they either drain you or give you energy without an outlet for that energy. They make you sleep for days or not even for twenty minutes, and sometimes make you cranky and you lash out at people. Sitting alone is hell, waiting for a text is heartbreaking, hoping someone who doesn't work in the hospital opens your door is depressing, and phone calls are just terrifying because the only reason people pick up a phone now days is for bad news.
So with all of this going on you can't help but wish things were a bit different. Wish that the hospital stays could be handled differently or that people would understand the "fear" of being alone.
I can't speak for any CFer or how they feel or what they go through, but I can speak for myself and the way I feel from time to time. I wish there was a pill that I could take something quickly, anything really that could keep me home out of the hospital. That would let me attend the get togethers, not interfere with work schedules, school, or families and be able to be there in person not just in heart!
Of course you'll always have the closest ones to you there for you when they can be. However, even in my situation my hospital is a 30 minute drive from my house so I try to tell my fiance not to come up but on the weekends. He normally works 7am-8pm Monday-Friday and we have animals. So to ask him to be by my side the whole time is selfish and horrible at least to me. He calls and texts all day long and makes sure I am ok. My parents come up whenever they can and always call. I have two friends no matter what who make time for me and are always on point. I know that my family is one of the largest Italian families in our town yet my mom, dad, and sometimes sister and grandmother are the only ones I see. Other than that I see nurses and doctors all day long. However, sometimes that isn't enough so what is that sounds stingy or selfish.
Even if we are fine, are not at the end stages of our disease, not having surgery, or are not in the ICU, we still need to know we are loved and cared for even if it is the "same ol same", "typical", and "normal" routine.
Please remember to show the CFer in your life how much they mean to you! Even if it is the 20th time they have been admitted in a year stop and say hello, gave them a call, send a card, or do something out of the blue and order a pizza for them. Don't let them think they are alone because the hospital is the worst place to feel alone.
Comfort is at your finger tips,
Sandi
Sandi
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