At age 22 while living in Mongolia I developed a severe chronic pain condition that effects every aspect of my life. Continuing this blog reminds me that life's challenges are stepping stones meant to lift us, not roadblocks meant to defeat us.

Wednesday, August 18, 2010

Mission Impossible?

I've realized several things these past few weeks.

1- My situation isn't changing, and might not for a long time.
2- That's depressing.
3- I can't keep life on hold or just wait for this illness to go away,
4- but I can't live life like I used to.

I mentioned a while ago that I was starting a new mission, separate from mongolia and full time missionary work. Before I left I was busy busy busy, working while going to school, volunteering for work experience, playing volleyball a decent amount, camping and hiking on the weekends. Then I started this blog as an energetic, totally excited sister missionary who had a crazy strong desire to serve the Lord and the Mongolian people. While getting ready to go I remember sprinting during every gym time and trying to get physically exhausted in order to handle sitting at a desk for the rest of the day studying. While in Mongolia I was lucky to have a companion who was williing to get up at 5:30 a.m. on preparation day so we could play soccer with the Elders. Then we would sometimes run to appointments so we could fit more lessons in a day. Some weeks we would stop by several homes on the way to church and pick up as many people as we could. We stood out enough in our skirts and everything, sprinting in the ger districts and trying to hold onto our bags I'm sure made people think we were crazy. ;)
Sorry about the trip down memory lane, its just that I didn't realize until now how much we define ourselves by what we do. Our accomplishments, our hobbies, how we spend our time and what we love to do make up our identity and how we would like the world to see us. I love being known as an athlete, it embodies what I truly love to do. I really enjoy working with people who have developmental disabilities, I value their friendship and it is a very rewarding and fun job. I love hiking, camping, being outdoors, and taking pictures of beautiful places. This is who I am. But now......... the things I do are vastly different. In a way I have lost what I thought was my "identity". (at least temporarily, I don't think my illness is permanent but it is definitely choosing to hang around longer than I'd like).
Its been a rough week pain wise, but besides that I was trying to understand why I was mourning so deeply and completely. I had lost some months of my mission and time in Mongolia, that was really sad, but I was lucky to have the time I did. I still have my wonderful family, and good supportive friends. I have knowledge about the plan of salvation and my Savior, so why was I so blue? Along with the things I've realized lately, I need to add that

5 - I am mourning for the loss of myself.

If we are defined by what we do, then I really don't like who I am now ;) (couches, movies, trying to sleep, pain control.) But that isn't how it really works, right? Each of us is more than just what we do. So i'd still like to write about my new mission; the mission to take control of this illness instead of letting it take control of me.

Mission Impossible? I think not, for with God all things are possible.

Monday, August 2, 2010

Living with the Point System.

"Imagine that you wake up each morning with a certain number of points. If you slept really well and did nothing to make you sore the day before, you might have 15-20 points. If you had a rough night and worked a lot yesterday you wake up with only 5 points. On the average day you have 10 points. Each movement and action costs something. Showering = 5 points. Getting dressed = 3. If you put your shirt on backwards or want to try on something different, the 3 points are wasted and you need to use 3 more. On an average day showering and getting dressed uses up most of your points before breakfast. You realize showers aren’t necessary daily.

Breakfast means lifting the gallon of milk out of the fridge (1 point), carrying it to the table (1 point), getting a bowl and the cereal (1 point), you get what I mean. Putting breakfast away is costly too. Sitting up strait in a chair costs a point every few minutes, so things like responding to e-mails or working on a computer become difficult. Not even talking is free. As you run out of points you get short of breath and need to stop talking.

Walking drains points too. Anything more active than walking is out of the question right now, you barely have enough points to shower every few days. Pain keeps very careful track of the points that you spend so there is no cheating the system. When the points run out you have no choice but to stop and rest. That might mean having a chair in the kitchen so you can rest while you stir a pot on the stove, or finding the closest bench in a store and waiting until you have enough points to get back to the car. Resting can earn you a few more points. You learn to save them up for what you really want and need, just like you would save money for that new bike you really want. You save points so you can call and talk to your friends on the phone, make it to a doctor’s appointment, or paint for an hour. But each day there are things you really want to do that you simply can’t pay for. You can’t overspend, because it physically hurts and makes you weaker and poorer for tomorrow. The worst is when you really need medicine but you don’t have enough points to go and get it. Thank goodness for close family and friends at this point, calling out loudly and asking for help costs points too.

When you are in public and around others you worry about seeming rude and standoff-ish. From the outside you look fine, others can’t see the painful point system you are tied to. They wonder why you won’t play volleyball or join in the conversation. It is hard to focus on others when pain keeps bringing you back to yourself, and all your points go towards staying standing and composed. What you want to do and what you can do become two very different things. It is hard to meet new people because their first impression of you is so different than who you really are. But you can’t stay out long anyways, your points are almost used up."

I was trying to describe to a doctor how I could only do a certain amount of things a day and how sometimes i'm just plain spent, and the idea of points came to mind. Those that suffer from rheumatoid arthritis, auto immune disorders, chronic back pain, clinical depression, foot or knee injuries, fibromyalgia, or aging in general, experience the limiting “point system”. It is invisible to others. It has definitely made me more aware of what others might be going through, and I have no place to judge anyone. Even when people look “fine” and “healthy”, they can be battling with pain or disease. I’m going to try starting college again in a few weeks and that is going to add a lot of physically costly things to my to-do list, but I’m already marking out where the good soft comfy chairs are around campus so I can earn more points during the day ;)

So to all of us that aren’t limited, ENJOY LIFE!!!! :D. We might not always be so lucky, do all you can while you can. And to those of us that are limited, I can promise that there will be relief. Christ conquered death, and has promised that all of us will be re-united with a perfect, healthy, pain free body for eternity. Sounds so wonderful, and it will be a free gift to all of us :) (see Alma 11:44-45 in the Book of Mormon. If you don't have a copy of one you can access the bible and book of mormon from our church website, Click the link on Alma 11:44-45 to read those scriptures, seriously they are so good! (and give hope to all us hurting people ;)

Health up-date

We still don’t have a name for whatever is going on with me, but the doctors have been great and have done a bunch more tests. More ultrasounds, blood work, acupuncture trials, and referrals are in for the next few weeks, i’ll keep you posted and let you know if we find anything out. My reflexes are still hyperactive and I have weird little muscle contractions and spasms throughout my back, ribs, arms and legs that suggest something neurological, and my pain sensors are still revved up, especially on my right side by my ribs. The neurologist said some infections and viruses can cause damage to the central nervous system, so maybe that happened. A GI doctor says my liver is very firm and might be enlarged so we are looking more into that too. We have ruled out anything rheumatologic we think. The plan is for me to see doctors at the University of Utah when I get to Utah in a few weeks, and maybe go to a pain clinic. At this point I am totally okay with us never finding out what it is as long as it goes away ;) We will see how college goes, I won't be able to have the life style I used to but I should be able to at least make it to class. Whether or not i'll be able to focus in class is pending haha ;) I'm excited to see family in utah soon! love you all!