What It's Like Today

In the interest of being more honest about what chronic illness is like for me, here's a confession: I'm really sad today that I'm sick. 

By God's grace, I'm a fairly positive, hopeful person that looks for the beauty in my life more than the dark, but every now and then I get emotionally exhausted. Every moment of every day some part of my heart and my mind is distracted, plagued by thinking about how my body feels. Sometimes, my pain, dizziness, shortness of breath, or pounding, arrhythmic heart is ALL I can think about. Other times, I'm just so tired that I can't get through a full idea or sentence without stopping. I can't remember the last time that there wasn't some little part of me being forced to direct attention to self-preservation. You know the feeling: you're sick with a cold, and there's just this little bit of you that has a running script of, "dang, my head hurts. Uggh, this congestion. When should I take another Tylenol? I hope this person isnt grossed out by me. I wonder if they can tell how sick I am." Or, when you have something really awful like strep-throat or stomach flu, and it just hurts so badly that it is ALL you can think about. Well, that's how it is for me ALL the time, and it's been this way for 2 years now. 

Maybe it's the "2 years" part that has me newly depressed and discouraged. My bizzare symptoms began 2 years ago, the week of Hazel Belle's first birthday. Anniversaries do things to me, and my little, emotional self seems to begin groaning before my mind realizes that there is a seasonal reason for my funk. 

I can't have a conversation, or rest in my bed, or do an errand without constantly having to evaluate how much more I can take. I HATE IT. I'm sick of being sick! It is so, so draining. I feel like I have adjusted somewhat to the constant physical drain. I just know now what I can and can't do. I usually know the point at which I am officially spending too much energy and WILL be forced to pay the price later. I have to decide all the time what activities are worth X amount of cost. Mostly, I choose to spend what I have on people- mostly my family and making memories with them. I could spend more time resting, but for what? A lifetime (doctor's predict) of memories of missing out? No thanks. I'd rather flash and fizzle over and over than just be a tiny little flame in pajamas that's not really shining for anyone. All that to say, I'm adjusting to the physical limitations. The emotional drain? Not so much. 

I miss using my full heart and full mind to focus on what's in front of me, and this week I'm just so, so sad about it. I want to use my energy for more than just being able to pick up kids from school and maybe take a shower. I'm glad that I've been able to make it out for a few holiday events- office parties, etc., and I have enjoyed them. I'm glad that my family understands that being together at church for a few hours or picking out a Christmas tree means that I'll need to spend the rest of the day in my bed. I'm also hopeful that once this baby is born (about a billion years from now...) I can get back on all my medications and feel a little bit more energetic- even if it is a strange, manufactured feeling. I know that I won't feel this sad every day, but I do want to share more often when it feels this bad.

I'm feeling pretty angry today too. I'm pissed at POTS. I'm frustrated that the medical community does not understand why this happens to people- young, strong people in the prime of life. I feel like I have to stay at least a little bit mad about it, or I will lose my willingness to fight back. I don't want my children to get this crap. I don't want this to swoop down and do to my daughter what it has done to me right when she most wishes she could be healthy and strong for her family. I don't want my grandchildren to have to worry about their mom fainting. So, I have to stay a little bit mad. I need to be a squeaky wheel... if only I could figure out who it is I should squeak to! If you're a passionate, medical researcher looking for a cause, you give me a call! 

Advent is a good time for groaning with dissatisfaction, I think. "Long lay the world in sin and error pining." "O, come, O, come, Emmanuel and ransom captive Israel that mourns in lonely exile here until the Son of God appear!" I feel the pining! I feel the captivity! To modernize a bit: "My body is a cage that keeps me from dancing with the one I love." I don't want things to stay this way, and I'm SO glad that things will be new someday. I need the Incarnation to be the truest of true. For today, I'm crying.

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