Shouldn’t you try to be your best self all the time, and not wait for something like a day on a calendar to dictate when you’re gonna become your better self? Well that’s what I think. But then again, I don’t think that I was my best self this past year.
Yeah, I know, a lot has happened this year. I’ve dealt with a perforated bowel, I’ve dealt with EXTREME anemia/fatigue issues…I’ve dealt with issues in my own head too.
I’ve always been an active person. The whole concept of “take it easy” has never been easy for me. I always reflect upon my younger days, when I was student council president, on EVERY sports team (except baseball….I got cut from that team ). And believe me, I was satisfied with nothing less than the HIGHEST marks. I couldn’t wait to blow the doors off of high school. But my future was destined to be something other than I had imagined it.
I did a radio interview with my father and members of SOS Organ Transplant awareness team. We were on with a delightful lady named Tabby. We did this interview just this past Saturday. It would be Tabby’s last day. I spoke truthfully and I spoke with confidence. Tabby commented on how strong I was, and was kind of shocked to hear that I suffered from kidney failure.
Everyone always comments on how “strong” I am. Yeah, I think so too. But at the same time, I suppose like anyone else, I have my moments too. People probably think I’m strong because I don’t let them see me cry often. But having to stay home a lot and not go to work as often as I want to means that I’m home alone a lot. And what do you do when you’re alone?
I think things to myself like…I wonder what life would have been sans Lupus. I wonder if I’d have finished school and have been happy in a full time job by now. Would I have bought my first place by now? Would I be engaged? Planning my wedding? Already married? Maybe I’d have the energy to go to the gym all the time, and I’d be super healthy. Maybe I’d have a child. Who knows?
On the flip side, if not for Lupus….would I be as close to my father as I am now? Would I have met the wonderful people that I’ve met? Would I have the same friends? Would I have gone to the wrong place at the wrong time?
I don’t often think about that though. I’m always thinking about “Life without Lupus”. Sometimes I’ll just be sitting there, thinking “what kind of life IS this?”. I’m 25 years old but sometimes I feel like I’m 65. I know it’s important to listen to your body, and when my body is speaking, I hear it. But oftentimes I don’t want to listen. I almost feel like if I don’t do that thing that I want to do simply because I feel “tired”, it’s almost like admitting defeat. I hate to feel defeated.
I don’t think I’ll ever get used to relying on others all the time.
While I think that it’s important to try to be your best self all the time, and not wait until something comes up before you decide to make changes, I also think (and hope) that this will be a year of changes for me.
I want to go back to school on a regular basis. I want to be done and over with that, and get into a real job. I want to be able to hold down a big girl job and be more self sufficient.
I want to try and be less depressed about my situation. Yeah, I said it. Depression. Thank God for the wonderful people around me. Some of these wonderful people don’t know that they, in part, are what keeps me going…..keeping me from falling into a pit of depression, never to be fished out.
I want to go back to work for a full 20 hours a week. I don’t know how possible that will be unless I either get a transplant or do home hemo, but I want to do it. Not for the money. Nothing like that. Just for myself.
I’ve never been negligent with my body, so I can’t say that I’ve gotten ill or hospitlized due to my own negligence, but this year, I want to try and remain healthy. I don’t want to be admitted to the hospital this year due to “sickness”. I know that I’ll probably have a plastic surgery date, and a transplant date, but those are different. I’m hoping that I can get through this year with as few hitches as possible.
When dealt a hand that doesn’t appear to be the greatest, it’s so important not to give up. It’s ok to cry. It’s ok to want to be left alone, and it’s ok to segregate yourself sometimes. I think it’s also important to talk to others and not make the decision to keep everything bottled in. Everyone has their crosses that they have to bare, and nobody is immune. This just happens to be mine.
I think R.E.M. said it pretty well.
When the day is long and the night, the night is yours alone,
When you’re sure you’ve had enough of this life, well hang on
Don’t let yourself go, ’cause everybody cries and everybody hurts sometimes