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 Iím not too sure how to process everything right now. Iím not too stressed about the large weight gain Iíve had, because I know itís from all of the new medication that Iím on and at the current moment, thereís nothing I can do about that. I think the hardest thing that Iím having the hardest time adjusting to is the fact that I canít 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 doesnít 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 didnít 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 didnít even walk around the whole grocery store, nor were we in there for 10 minutes before I literally couldnít walk anymore because I couldnít breathe very well. Something as simple as a grocery store broke my positive moral because it made me face something I didnít want to see: Iím still sick.
So after that disaster, I figured that I didnít 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 didnít 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 didnít want to be ďthat personĒ blocking the aisle or ďthat personĒ 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 itís probably childish, but I had a little too much pride to surrender to the chair. In reality, it didnít really matter which chair I used. People still stared at me and I felt embarrassed. When people would look at me, the first thing theyíd look at were my legs. On the outside, it doesnít seem like thereís 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 itís not like Iíve never had this whole breathing thing to deal with. I just donít 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 didnít 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 Iíve been given, and keep moving. With that being said, I promise the following things to myself:
1. Be patient with myself. I didnít get sick overnight so Iím 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. Everyoneís journey is their own personal, unique thing and no oneís 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 itís ďmy life and no one controls me and my destinyĒ. Problem is, with Lupus, you are not always in control. When I get sick, I act like itís no big deal and I donít 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 Iím sick, I need to slow down. Thereís 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 itís a ďsign of weaknessĒ.
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 itís 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 Iím sick because itís so difficult to explain it to people and have them understand. You canít visibly ďseeĒ whatís going on with me. It takes a ton of blood work, cat scans, MRIs, biopsies, and other tests to figure out whatís wrong with me most of the time. Itís 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 Iím doing is complaining and think that Iím ďtoo young to experience those kind of aches and painsĒ. 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 canít 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 Iíve had Lupus. Despite having it this long, Iím still in denial that I have it. I still feel like Iím in the ďwhy meĒ phase. I donít smoke, I donít drink, I donít do anything reckless and out of ALL the people in my family, Iím the only one who has this disease. Itís 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 couldnít hang out with me because I had so many new limitations and it was ďinterfering with their social circleĒ. 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 Iíll definitely be working on is accepting that I am sick. Yes, I have Lupus, but it doesnít define me. Iím 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 isnít 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 Iím constantly at war with myself; fighting over what I used to be able to do and trying to force my way backwards. Iíll just continue to move forward, be positive, and live.