Sunday, May 6, 2012
Isn't it Funny
So while on a pinterest spree today I decided that I would pin like every C.S. Lewis quote I could find because I am madly in love with that man and his wisdom. I kind of started becoming obsessed with him when I was a senior in high school and struggling with Christianity and did my senior research paper on The Screwtape Letters, my obsession went full force in college with my religion degree and the advent of the Narnia movies. Anyways, all this to say, one of the quotes I found and pinned said this, "Isn't it funny how day by nothing changes, but when you look back everything is different..."
This is how my life has felt lately. Somehow with the end of the semester of school and getting yet another diagnosis, the pain increasing every day, looking at pictures from my "old life" and looking at where I am now, etc, etc. I realize just how different things are, when really it all feels the same. But it all feels the same because even though it was gradual, it was sudden, but I've had time to get settled and into a "routine" as much as someone with chronic illnesses can have a routine anyway.
I think the thing that has been upsetting me the most is that I'm constantly surrounded now (because I'm in college again) by people who are so active and free spirited and crazy and work out and I used to be that person and I took it so much for granted. If someone had told me when I was at track practice and complaining about running a few extra laps or doing a couple extra jump drills that in less than 10 years I wouldn't be able to walk more than 75 feet without either feeling like I was going to pass out or passing out before I thought about the feeling. If someone had told me that all the times I 'hurt' from the intense workouts I was doing or the running on the beach, that in less than 10 years I wouldn't be able to get out of bed without being in pain because simply standing up and putting pressure on my joints would be painful. If someone had told me that I would have to use a shower stool, a cane, a wheelchair, etc at the ripe old age of 26 I wouldn't have complained about standing up for an 8 hour shift at the Piggly Wiggly. I don't think I would have complained at all then, if I knew where I would be in 10 years. I think I would have realized how lucky I was and how grateful I should have been for being as healthy and active and blessed as I was. I was an athlete, and a good one. I had a job, I was in the band, I went to college, I could work (at one point I had 3 jobs on top of going to school). I graduated. I got a big girl job. I was still running, my knees hurt sometimes but I was still running 5, 6, 7 miles at a time...until 2 years ago.
But they always say hindsight is twenty/twenty so right now it looks like a huge difference, but day by day, it isn't a big deal. Every day, I get up, I evaluate my pain level, I eat breakfast, I go to school, I sit there and get more in pain by the second because of the furniture, I finish up my last class, and come home and take a nap, eat dinner, watch some tv, and go to bed and do it again. Randomly there are dr's appointments thrown in there and they tell me thins that at this point just seem like words and no big deal. Every time I go to the doctor there is some new something so I know that's coming and it doesn't usually phase me. So yeah day by day it doesn't look any different, we tend to do the same or similar things every day, but when you look back it looks so different.
Eight months ago, I was a teacher of special needs kids and I loved it...the next day I wasn't that was kind of an earth shattering blow...but two or three days later I was just back to day by day and not looking any different.
Two or three weeks ago I 'only' had ulcerative colitis, celiac, fibromyalgia, and orthostatic hypertension. The next day, I had the diagnosis I had been "waiting for"...neurocardiogenic syncope or dysautonomia. I say I had been waiting for it because we had heard about it from several friends, researched it, and it fit me to a T...however, I am not one of those patients that is going to be known as a google doctor and read a whole bunch of information on the internet and walk in and demand a doctor test me for this disease so I can prove I am right. I do steer them in the right direction, but I don't force my uneducated beliefs on them. Anyways, basically all a diagnosis of NCS does is make my disability paperwork keep looking good because there is nothing they can do for it. I can be aware of it and try to fight off the passing out when I feel it coming on and they do have me on beta blockers now to try and stabilize my heart rate (it was going between 130 and 150 pretty much all the time which is way too high). But now it's back to day by day again. We get news and we adjust. We get a routine and we adjust. I have to adjust bigger than other sometimes, but I still adjust. Much of my life is mind over matter and God over human. I trust God and believe in the Spirit (especially after the study the small group is doing right now)and know that He would not give me anything that I cannot handle and He cannot help me through, so you just go back to day by day.
I try to live my life as close to normal as possible while I can because I know that one day (probably sooner than later) I won't be able to get out of bed most days, now it's just occasionally. I am not the same as everyone else...I take lots of breaks, and when I look back my life is way more drastically different than most 26 year olds would be, but I still take it day by day like everyone else. And I bet, I laugh at myself way more than anyone else on the face of the planet does...because it is so much easier and takes way less energy to laugh than cry :)
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