Having Systemic Lupus and trying to live a normal life can be a challenge at times. I have always loved a challenge, but sometimes the Lupus whips my tail! There are days when I feel as though there is absolutely nothing wrong with my body, mind, and soul. Then, I have those days where my memory fails me. I feel as though my brain is a computer with a virus, and certain files have been "corrupted", or somehow suddenly "missing"! I used to be that person that was always at least 15 minutes early, and prepared for the task at hand. And now, I'm the, "Well, let's pencil that in." I don't like not knowing from day to day how I will feel as life passes through. Sometimes I feel as though I'm in a fog.....I could fall asleep during a flare, and awaken not realizing whether or not I slept five minutes or five hours!
I have to say that I had a fairly decent year until the weather changed recently. The sudden change from warm to cold seems to have sent my body into some sort of shock. The worst for me is the lack of energy. Several weeks ago, I was able to work part-time, and even help a new loved one by painting her apartment! What's frustrating is that I only have a small bedroom left to do, and I just can't seem to get enough energy to go over there and finish the job. I'm one of those people that likes to work until the job is done! Somehow, in my mind, it's unacceptable to "take a break". In my mind, it feels as though I'm "slacking"! I am one of those women that has to keep her home clean and decent at all times. I never leave dishes in the sink. I mop the floors just about every other day, and we don't wear our outside shoes inside our house! And as soon as we return home from the outside world, the first thing we do is come inside and wash our hands. I guess I'm a little anal-retentive, and a whole lot germaphobic! In addition, I just cannot leave the house unless my bed is made! I don't care how ill I get, I will never let my husband find me in a state of uncleanness. That's just how I feel I should be, even though it takes a lot of energy when I'm not well.
I also have this weight gain phobia. When I was younger, my mother would humiliate me by calling me degrading names and such. Even though my husband loves me no matter how I look, I find that I'm very hard on myself when it comes to weight management. I'm careful with my diet, especially during the times when it's difficult for me to exercise. I make sure to keep up with my water and fiber intake, and I will only take steroids in times of a Lupus crisis. Yes, there is a difference between a "Lupus flare" and a "Lupus crisis." With Lupus flares, I mostly handle them at home with assistance from Dr. Adessa. With the Lupus crisis, I very reluctantly get admitted to the hospital due to the fact that I usually dehydrate due to vomiting and appetite loss. During these times, I have no choice but to be admitted to the hospital, as all the meds have to be administered IV until I am able to tolerated anything by mouth again. There are no two Lupies alike. In my case, a Lupus crisis begins with symptoms of gastritis, like vomiting and appetite loss. The pain and fever usually tag along for the ride as well. Nowadays, I usually run a low-grade fever on a daily basis, and Lupus fevers are not reduced by meds like Tylenol or Motrin, or anything else for that matter. If it's not that high, I can usually just work around it. If it's too high, I'm forced into bed rest. With Lupus, your body dictates what your day will be like. You could make all the plans you want; if your body says "no", then all bets are off! The best thing to do is just go along with it, as though you really have a choice in the matter anyway!
I would never lie and say that sometimes I get downright angry with my body, as I feel that it has somehow "betrayed" me! It sounds crazy, but this is my blog. This is my story, and this is my truth! The disease may be disabling at times, however, having the courage to share my journey in the raw is somehow restorative and empowering. I often look back and wonder why I didn't have the courage to share my trials and triumphs from the very beginning! Some days I have Lupus, and some days Lupus has me. I've finally learned that it's perfectly OK to just "give in" to it so that I can live to fight another day! It's OK to lie down, as long as you have the desire to get up again. Blogging about this illness is not only a way for me to be expressive, it's also a way for me to be informative. If even one person is somehow assisted or uplifted by what I have to say, then laying myself bare in this blog is very much worth it.
I thank you all for your support and prayers. Andrew and I are more and more in love every day, and most days his love is all the medicine I need.
Live well, and please love and support our fellow Lupies. It can be a lonely world for anyone with this illness. That's all Lupus is, and illness, not a death sentence!