A promise to myself
Thursday, March 01, 2012
Since being out of the hospital, I have had a harder time adjusting to home life than I thought I would have. Things have been an emotional roller coaster and I’m not too sure how to process everything right now. I’m not too stressed about the large weight gain I’ve had, because I know it’s from all of the new medication that I’m on and at the current moment, there’s nothing I can do about that. I think the hardest thing that I’m having the hardest time adjusting to is the fact that I can’t do simple things as easy as I use to. For example, walking. Walking was never a hard thing to do. I found it to be easy; actually, too easy. So easy that I never really considered walking to be cardio exercise because it doesn’t get me sweating enough. The first disaster happened the morning after I got out of the hospital. I decided to go to the grocery store with my boyfriend. I figured I could handle it. How hard could it be to walk and push a cart? I didn’t have to walk fast and I had the cart for support if I got tired and needed to lean on something. I walked into the grocery store optimistic. By the time we left the grocery store, I was bawling like a baby. At first it was okay. But then I started going into a coughing fit, which was making it hard to breathe normally and hard to catch my breath. We didn’t even walk around the whole grocery store, nor were we in there for 10 minutes before I literally couldn’t walk anymore because I couldn’t breathe very well. Something as simple as a grocery store broke my positive moral because it made me face something I didn’t want to see: I’m still sick.
So after that disaster, I figured that I didn’t want to go anywhere else for awhile but ended up going to Wal-Mart the next day. I remember before I got sick, I told my boyfriend that I didn’t care what happened to me, I would NEVER EVER EVER EVER use one of those motorized carts that people use sometimes in Wal-Mart. I always thought they were slow and obnoxious and I didn’t want to be “that person” blocking the aisle or “that person” moving so slowly that people get impatient and make nasty comments. So when we got to Wal-Mart, I actually spent about 4 full minutes arguing with my boyfriend because I demanded him to push me in the wheelchair because I refused to use the electric one. Yes, I know it’s probably childish, but I had a little too much pride to surrender to the chair. In reality, it didn’t really matter which chair I used. People still stared at me and I felt embarrassed. When people would look at me, the first thing they’d look at were my legs. On the outside, it doesn’t seem like there’s anything wrong with me. I pretty much just held me head in shame the whole time. I know I have nothing to be ashamed of, but I just felt horrible. Completely horrible.
When I was first diagnosed with Lupus, I had fluid in my lungs and around my heart, so it’s not like I’ve never had this whole breathing thing to deal with. I just don’t remember how I coped with it because that was nearly 4 years ago. I was more distraught over the fact that I was going to miss cheerleading tryouts for my senior year in high school, I didn’t care about breathing. But now, with my weight loss goals and other life goals, I have no choice but to acknowledge it because I have to overcome this time in my life. I have to be kind to myself, accept the cards I’ve been given, and keep moving. With that being said, I promise the following things to myself:
1. Be patient with myself. I didn’t get sick overnight so I’m not going to get better overnight. Rushing this process is not going to benefit me in any way. My journey is not a race, there really is no finish line or time clock. As long as I do what I can, everything will work out as they may.
2. Stop comparing my situation to others. This is a big thing for me. When it comes to things like weight loss and such, I look at how people do things and think that I can do the exact same thing and get the exact same results. I could do that if I had the exact same body, which I do not. Everyone’s journey is their own personal, unique thing and no one’s will be exactly the same. I have to worry about my own situation, limitations and ability and work with what I have.
3. To realize 100% that I am a HUMAN, not a bionic cyborg. I have this mindset to where I can do anything that I want to do because it’s “my life and no one controls me and my destiny”. Problem is, with Lupus, you are not always in control. When I get sick, I act like it’s no big deal and I don’t give myself time to recover. I jump back into whatever I was doing (which usually ends up to be pretty bad in the long run). I have to realize that I only have 1 body and 1 life and I must take care of it. If I’m sick, I need to slow down. There’s nothing wrong with a challenge every now and then, but I need to do a better job at listening to my body instead of thinking it’s a “sign of weakness”.
4. To stop worrying about what other people may think about my disease. When it comes to me being sick around other people, as I stated before, I always act like it’s not a big deal. Lupus is a very big deal. It affects a lot of healthy tissues, joints and organs for basically no reason at all. A lot of the time, I hide the fact that I’m sick because it’s so difficult to explain it to people and have them understand. You can’t visibly “see” what’s going on with me. It takes a ton of blood work, cat scans, MRIs, biopsies, and other tests to figure out what’s wrong with me most of the time. It’s not like I can turn my body inside out and let you view the damage that my disease has caused so far. Whenever I say anything dealing with my pain, such as chronic fatigue, arthritis, or random muscle pain, the first thing people think I’m doing is complaining and think that I’m “too young to experience those kind of aches and pains”. Please know that diseases do not have age limits, do your research people. You know how awkward it is to tell my friends that I can’t hang out at the mall with them because my arthritis is flaring up? It makes me sound like an old woman!
5. Lastly, I will accept my life as it is and deal with it accordingly. This is the biggest promise of all for me. April will mark 4 years since I’ve had Lupus. Despite having it this long, I’m still in denial that I have it. I still feel like I’m in the “why me” phase. I don’t smoke, I don’t drink, I don’t do anything reckless and out of ALL the people in my family, I’m the only one who has this disease. It’s tough going from the healthy rah rah cheerleader to the sick girl. The hardest part of all is that I actually lost friends because I was sick, simply because I was like the pink elephant in the room. My ex friends felt they couldn’t hang out with me because I had so many new limitations and it was “interfering with their social circle”. There are a lot of different emotions that go on with new diagnosis, especially when you have to go through most of them alone. I think one thing that I’ll definitely be working on is accepting that I am sick. Yes, I have Lupus, but it doesn’t define me. I’m still the person that I was before I was sick, if not more bossy, dedicated, and determined. I just need to take every day a step at a time and live life instead of sitting around pondering why or how my life resorted to this. My Lupus isn’t going anywhere, so I may as well embrace it, take care of it and move on. I will no longer treat my life like a battlefield, where I’m constantly at war with myself; fighting over what I used to be able to do and trying to force my way backwards. I’ll just continue to move forward, be positive, and live.