I sent this email to a dear friend and figured, since there are only a few people who follow our blog and I care about their thoughts, I'd share it with you (slightly modified, of course). Responses are welcome.
I am going to impose upon you, the reader, to request for me some desperately needed, in-your-face help. I'm having yet another sleepless night and this one thought keeps recurring, so I'm going to REALLY open up and make myself (and possibly yourself) uncomfortable with some super private thoughts, should you choose to continue reading... would you mind being completely frank and honest with me regarding something that has afflicted me for months?
I have lots of so-so days. By "lots", I'm talking I have maybe a week at most of okay days with regard to my health. I mean, I'm able to get up out of bed, shower, maybe put on some makeup, occasionally throw on some real-world clothing, and go out to dinner with my husband - rarely, I have even achieved some light exercise. More often, I stay home in my PJ's and watch movies or do homework on so-so days. However, they are defined as "okay", not "great", because I am EXHAUSTED. Exhausted from the painful, sleepless night I had the night before; from the head that won't stop aching; from the gut that won't shut up; from the bones that scream at me to lose another ten pounds so they won't creak as often. On those okay days, I feel the weight of exhaustion from my symptoms on my bad days, and doing much more than a couple or a few hours outside in the real world on okay days almost invariably triggers more bad days, and frequently actually turns so-so days into bad days within a short time frame.
On my bad days (tonight included), I barrage myself with "Man, if I only felt like I did yesterday NOW, I'd be able to do SO MUCH! I'd figure out how to solve world peace, end global poverty, take out the trash..." Then old habits of self-analyzing kick in. "Wow, Emily, your so-so days really aren't THAT bad. Seriously, you thought you were tired THEN?! NOW you remember what it feels like, with a migraine and knees that feel broken on top of it." So I torture myself with thoughts of "What if I can control this much more than for which I am giving myself credit? What if I really could have gone to work last week, but I am just wimping out? What if our (currently VERY dire) financial situation is all just because I'm too lazy to suck it up and get my butt out of bed? What if Heavenly Father is trying to teach me a difficult lesson in self-reliance through adversity?"
PLEASE be honest: am I going crazy? I mean, are these valid thoughts, or do I have to try arguing with myself about how sick I truly am? My doctor recently helped me write up FMLA papers for work because my job doesn't want to get rid of me, but I'm hardly there. Doc put that I should really see a doctor twice a week (can't even afford the $30 copay that often), with flare-ups another two times a week. How, then, does this get me out of going to work for two weeks straight, I ask myself? It doesn't medically clear me according to my doctor. But I FEEL my body and I know I'm exhausted when I'm not having a "flare-up". I read about those people who convince themselves they have a medical condition until they start exhibiting symptoms. They physiologically mess with themselves to the point that they truly suffer. Extreme hypochondria, or even Munchausen syndrome... I wonder if I am one of those people!!! I don't revel in attention received from my illnesses; rather, it completely embarrasses me that I have no answers, so Munchausen syndrome is out (phew!).
It is so emotionally, mentally, (need I say?) physically and spiritually TAXING - so I'm just praying you have some brilliant words of advice that can help ease my suffering with the war going on in my head. Have you experienced anything like what I'm describing? If so, what conclusions have you reached? I'm quite fed up with my constant health issues and the enormous consequences we're facing due to them, but I don't know if I could stand to realize if I had as much control over it as my brain is trying to convince me I do.
Please do not mince words with me. If you have been through this and have come to ANY finality of thought, please let me know.
With love and appreciation (and terrified anticipation for any responses),
Em
Emily, I'm going to text you. I think we should definitely have a chat!
ReplyDeleteI don't want to try to assume that my chronic pains are anything like yours. I've had joint/muscle pain and migraines most of my life. So, I do feel that I somewhat understand your pain. I lost vision in my right eye while working in China at 17 and have had migraines frequently ever since and my other pains and problems come from a genetic disorder called Marfans Syndrome that I got from my fathers side.
ReplyDeleteI don't necessarily feel like it is a mind over matter problem. You suffer and it is real, but there does come a point when wanting to live a higher quality of life becomes so overwhelmingly desirous that it does make it so you want to find a quick fix or some magic solution to your pain.
You probably won't. It will be lifelong and it will be hard and painful, especially if you want children. I just decided that even when it hurt the most or when I was in so much pain, I would live my life anyway. I got tired of the problems that arose from my pain and I grew sick of just being sick. So, I get up and go even if I could easily stay home. I prayed all the time and found comfort in the atonement and the pains He endured in Gethsemane.
Mostly, Em, I don't have words to fix you or anything like that. I just decided that I wanted to LIVE my life even if that meant living it in pain. I have become a master of attitude if I could not be the master of my body and I get up and do what I have to do even if it seems impossible.
I do want to add a disclaimer though, I have always thought that my pains were intense, but hearing you talk and seeing you suffer makes me want to say that maybe your pains are greater and therefore my experience is not comparable. But wasn't it Elder Worthlin who said, "There is no grief so great, no pain so profound, no burden so unbearable that is beyond the Master’s healing touch."
It takes courage to live each day in your pain. Just remember that courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."