One of the hardest things about being ill is having to depend on others. Its a very quick drop from needing some help to starting to feel like a burden. I want to mention that my family is kind to me and always makes sure I have food and water. When I ask for more than that though I feel like I am being pushy and annoying. Maybe I am. Tempers seem short with me, and grunts and sighs when I ask for what seems like little things to me make me feel worthless.
When I am thirsty I can just go get myself something to drink. So I ask. I can’t expect someone to jump and get me some water. So I wait. And they forget. Then I ask again. Suddenly I feel like a nag asking over and over.
In order to ask for less I hint at things…it would sure be nice to have a keyboard with the computer, does anyone know where it is? I need soap by my bathroom sink, does anyone know where that is? I would love to have a pencil and a sketchbook. Hinting doesn’t work though. I get told where the things are or simply “I don’t know”.
Part of it is I am just home alone a lot. By the time my husband gets home from work and running my son to lessons he wants to relax, not deal with yet another burden. My daughter on the other hand will call whenever I ask for her if she is home. She pulled down an old broken blind for me so that when the shades were opened I actually got some light, she has scrubbed the shower so I can shower, and made me lunch. She isn’t home often though, between school and work. She is probably home only a couple of hours every few days. Our roommate and my best friend Tim takes care of me as much as he can, but he works long hours as well, and may not be able to lend a hand until late at night. He wakes me every morning with a cup of coffee and breakfast before he takes off for the day. My son I don’t see at all unless I ask someone to go get him, but he is a 13 year old boy.
I think it’s a combo of me having too much time and needing too much and no one else having the time. I am sure I am cranky and bossy as well. If I ask for a dry cleaning pile to be picked up, chances are I have been looking at that pile for the last 9 hours wanting it to disappear. So it means more to me at that point than it should. If its forgotten for another day and I have to ask again, I am bound to sound like a nag.
I know I have girlfriends and my grandmother who would come help but I have to say no thank you. Limiting my exposure to people is the one thing I can really control to avoid getting an infection. I am being brought dinner by the wonderful women at the PTA daily, and I am so glad, not just because I know that I will always have at least one healthy tasty meal a day, but because its one less chore for my husband to have to do for me.
Sometimes my imagination runs wild with this burden thing and I feel like if I was healthy enough I would just pack a bag and go where to god knows where, just so I won’t be a burden anymore. I feel lonely, bored, scared and worthless. I met a girl at the hospital the other day. She was crying hysterically because she couldn’t wash her hair. She was getting upset about not getting jello. She was a complete spoiled baby, and I could really identify with her. Knowing I can’t get my sheets cleaned as often, and being thought of as paranoid for asking for them washed has brought me to tears. I know I can just get up and wash it. It’s a struggle for me every hour to remember that an infection could cost me my life. Being over-cautious and yes, even paranoid is something I am consciously doing because I so much love life. I don’t want to take any chances. I love my family and I love every day on this earth.
I am not clean as a habit so I am sure its extra annoying that the woman who can go days without doing the dishes suddenly needs her shower scrubbed before she will even get in it. I can imagine this is hard on my family, having to cater to me and coddle me. After so many years they must be so sick of me getting sick over and over.
I do have some suggestions for setting up a sick room though. If at all possible have it be in a guest room. Even if you share a room with a spouse you don’t want to feel like they would like you out of their space. Also you don’t want to upset them with any chances you might make to make yourself more comfortable that are different from what they might like. Make sure you have a back up supply of water. Tim put a pitcher by my bed next to a full cup of water, so even if I am alone all day long at least I have water. Also do the same with snacks. Tim put portion sized servings of snacks next to my bed incase I don’t get lunch, my husband put a box of cheez-its, so I will always have something to eat. Any sort of entertainment, especially things that allow contact with other people, such as phones or computers, a tv a book. Also if possible it would be good to have someone who could come through and do a quick clean once a day. Just 10 minutes of time to do little things that might be bothering you. Also clean sheets and towels and wash clothes daily are not just important because of germs but can add a bit of freshness and comfort.
Being alone after or during an illness can be hard on a person. Its bad enough to deal with the pain, discomfort, and exhaustion. Feeling like a burden can lead to depression quickly. Its hard not to feel despondent. Right now I am not the one to have answers on how to avoid that. I do understand how someone who is sick might just want to give up. Who wants to be a burden on the people they love most. I am so close myself to disregarding my own health so that I can get things done, stop being a burden, and lend a hand to someone who needs it more than I do. I am feeling so selfish, dependant and demanding. I almost didn’t write this. I want to help others with this blog, not whine and complain. I hate to be perceived as anything but very strong. Then I realized I am not the only one who feels this way. It would be so easy feeling this way to just give up. Some might even want an easy way out. It gets better though. It will get better.