I woke up when Kevin got home, around 8:30 this morning. We had our morning coffee outside and conversed about how his night at work had been and how my night with the kids had been. I got him all tucked in at about 9:30, took a shower, the kids swept and mopped and vacuumed, put my make-up on, folded laundry, put it all away, and then took the kids to my moms for a two hour visit. I then came home, woke up Kevin, rested while I made him brave Wal-Mart, and was able to get myself up and cook dinner. That was something I had been attempting to do for an entire week. I am so glad that God gave me the energy to accomplish something that many people actually take for granted.
I keep thinking that my chronic illness will somehow adapt to me and not the other way around. While I am learning my limits, I am also fighting against them. It's actually quite stupid because I either end up exhausted or causing a major flare. Maybe we need these types of lessons in order to accept the confines of our newly defined lives. So, there is a new normal for me.
My illness isn't going anywhere. Believe me, it reminds me of this daily. So, I need to just learn to deal with it and go with the flow. In a world full of "normal" it is hard to get people to understand that when you ask for a break, you're not asking for special treatment, but rather, the treatment you deserve.
I actually hate the word "normal". It is such a relative term. I mean, what exactly is normal? I think what they call steroids and immunosuppressives should really be called Personality Altering Drugs. Because, honestly, that's what they do. This is something none of my doctors mentioned before putting me on so much medication. I don't mean to be negative here, but if your illness doesn't kick your butt in one way or another, the medication will. That is simply a fact. It is kind of a catch 22. You will die without treatment sooner....but your body will rebel against the medicine and then you end up with more issues than you had originally. And here is the kicker...no drug can protect us from the outside world.
I don't have many friends (not true friends anyway) and people just don't really want to hear about my illnesses all the time. Unfortunately, they are a huge part of my life now. I realize that for some, even talking about their illness in a virtual world would be unthinkable. For me, though, it seems to be the release I need, that I can't often get in "real life". It is really a difficult distinction for me to explain.
If you reject me for my illness, you reject all of me. Only recently have I been able to stand up and say that this is for real. If being true to myself means disclosing, even when I run into the risk of rejection, so be it. If I can't accept what's happening, no one else will be able to. It is truly sad and disheartening that we live in a world where difference is so blatantly unacceptable.
I have hidden my sadness and fears very well on the outside...but on the inside, I am crumbling. When I had my emotional breakdown the other day, I assumed the fetal position and allowed Kevin to see me break. He held me for the longest time. I simply have not been able to allow others to actually see my sadness and vulnerability. I feel like I need to appear strong, invincible, and un-phased by my illness. I have been mistaken by believing that if everything appeared to be normal, than it was. I couldn't ever really let my disease know that it had me. I became a very good actress, happy on the outside, petrified and exhausted behind closed doors.
So, perhaps now God really has my attention. Though, I still have yet to figure out what He wants from me. My disease has brought me to tears...it has brought me to my knees. It has kept me in pajamas and in bed a lot. And it has withered my spirit. I am trying to accept each moment as it comes. I try each day to put one foot in front of the other. I am learning how to live in this moment...and I am learning how to truly hear God.
Illness is a metaphor. Illness forces us in a very strange and roundabout way to face the big questions whether we are ready or not. It's sad that it takes such a mind-bending event to make us reevaluate our priorities or who we are as people. I think this bizarre class known as autoimmune disease has taken cancer's place as the unspoken and unseen foe that has the potential to fester until the only result is to destroy everything it comes in contact with.
Cherish your family and cherish your time on this earth. Cherish your health. We are not promised tomorrow. Listen and let God guide you on a daily basis. He is always there...you just have to listen.
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