Thursday, November 29, 2012

A Day in the Life

So, I wanted to give an update, but I wasn’t sure how to do so. After a little thought and consideration I decided upon the idea of writing about a normal day for me. I thought this would give some insight for those wondering, and would be a more interesting way to share my days and thoughts than if I were to just list them out. So, here it goes:

The AM.

The starting point of my day always begins with the alarm. As soon as I open my eyes waves of aches and pains overcome me, and I immediately shut my eyes again, not wanting to remember any of it. Unfortunately, my wish is not granted, and after pushing the snooze button at least twice, I really have to wake up this time. I feel the sore muscles in my legs, and I keep them almost in a paralyzed state for whenever there is the slightest movement it sends off about ten different pains in all directions. Moving up I can feel the nausea in my gut from the night before, and added to that, the constant ache of my stomach. Next I am reminded again that I am very short of breath, and it often reminds me of when you come up for air after you’re underwater, and in those first couple breaths you just can’t get enough air no matter how fast or how hard you gasp. My heart is giving me trouble as well, and as I look over and watch my fish tank, I can see it shake every second or so as the beating in my heart shakes my whole head. I try to ignore also the pounding headache which includes all of my head- and when I mean headache, I mean top of the head, neck, face, jaw, all parts. In addition to my headache, my eyes are also burning and swollen. One day I woke up and my eye was swollen half shut, and didn’t open for an hour or so, which made driving to school a new experience. Another morning I woke up and I was so exhausted I couldn’t see straight- I’m not exaggerating. (That particular I stayed in bed awhile later.) Anyway, Realizing that I can’t close my eyes and try to escape the day, I have to convince myself to get out of bed. In my head I repeat the direction to “sit up..sit up….sit up now…” and often, and sometimes more than once, I have to count 1..2…3 and thrust myself up. Sometimes I fall straight back down, defeating all my efforts. After this I just give up and I have to roll myself out of bed and onto the floor so that gravity takes control, and doesn’t let me back into bed again.

Good. Step one is finished: get out of bed.

Step two: get dressed. This part renders itself a little easier since I have accomplished the most difficult jobs already. Putting on the first shirt I can find, and then some pants that I’m pretty sure match alright, I move on to my hair. Now doing my hair has become quite the task. Since my arms have lost quite a bit of muscle, whenever I lift my arms above my head to put my hair in a ponytail or something like it, I have to stop and rest about every 3 seconds. And let me tell you this adds a lot of time and effort to what was before a simple job. After finally finishing a passable job on my hair, I finish the small things left to do, and get in the car.

Awesome, we made it to the car.

From here it becomes easier and easier to convince myself to keep going. Because getting out of bed and getting ready takes two or three times as long as it did before, I usually end up eating my breakfast in the car. Now breakfast is a difficult thing to eat. My stomach has gotten into the habit of feeling nauseous almost constantly, and I also always feel full. But my brain however tells me that it’s time to eat. So I’m feeling sick, full, and hungry all at the same time. It’s really quite a unique experience, and brings a whole new level of difficulty to eating a breakfast bar. But after a few months of this, I must admit I’m getting pretty good at tricking myself into not throwing up.

So now, we’re finally at school.

Now school has become more, hm.. well just flat out more difficult. Because I’m extremely exhausted all the time, and feeling pretty sick every day, and usually behind in all my classes, it makes not only the academics challenging, but also brings even socializing into being some sort of an obstacle. In every class my mind can’t focus, and when I try to keep it focused on the material and the teacher, it’s like my brain starts to hurt, and it refuses strongly. In discussion classes I find myself barely able to keep up with the discussion, which I feel is pathetic, because it feels like the teacher isn’t even speaking English anymore. Also, I feel terrible because I will sit in class and be barely able to sit up in a chair and not fall over, and I’m trying to really focus on what we’re doing, or what class I’m even in, and I find myself unable to talk to my neighbor. In the hallways it’s a struggle even to say hi to someone in passing, because I’m completely focused on making sure that I just keep walking; left, right, left, right, etc. I can’t explain it, but everything is just so much harder than before. Because of all the pains and aches and exhaustion's I feel, I can’t even be myself at school. Often times, I can’t even be myself at home. I try to give my friends the attention and care they deserve, I try my best. I think I fail more times than I succeed however. Overcoming this new obstacle of still being able to be myself has proven to be one of the toughest trials I have faced yet. You have no idea (or perhaps you do) of how much I long to talk and laugh with my friends at school, or at church, or even with my family at home, but I just can’t. The limitations of my body have grown into limiting who I am it seems. This is truly what saddens my heart and spirit the most; not the partially paralyzed gut, or the muscle weakness, but the stripping of what seems the value of my life.

I’m not sure how exactly to explain it, I have to be honest, but I’m trying my best.

So, I get through school (or most days I do).

Coming home is great, and awful at the same time. I’m so relieved to have a break from running around all day, but at the same time I know I have a huge load of work to do, and all I really want is to climb into bed and never, ever get back out again. I slump down onto my chair and I swear every day I have this same argument in my head: to take a nap and not finish all my homework, or to just keep slaving away at it and lose the rest my body longs for. Usually I pick the latter, convincing myself only a couple more days till the weekend. I pull out my history book and start on the reading. I read one sentence. Okay I didn’t understand. I reread the first half. Okay I’m still lost. I reread the first five words, my  head is pounding, I see my bed out of the corner of my eye, no back to the book. Okay start with the first word: the. Awesome, great, I know that one. This is literally how each paragraph goes in each of my readings, and it is laborious to say the least. Reading and other homework now takes me three times as long as it did before, and I’m doing at least three times a lesser load. It’s truly a miracle if I get all my homework done.

Soon dinner happens, and I go back to my homework again. At last, it’s bedtime.

As I climb into bed, and settle down I remember, shoot, I forgot to take my medicines. I pull out the overflowing bag with at least 15 different pill bottles, and start to pour out the pills. I hate this part because I feel like I must be overdosing on something.. And I’m sure at least half of the medications do nothing for me. But, because I have to, I take them all, and finally get back into bed. It’s a bittersweet moment. I finally get to rest, but it is here that I experience again all the pains I have been ignoring and fighting against all day. I feel my legs burning, sore, with shooting pains going up and down. I feel the sharp tearing and ripping pains in my gut. I feel nauseous. I feel my lungs and heart burning from the strains of the day. I feel my head throbbing more than I’ve noticed all day. I feel my eyes watering up because they burn so much. I feel a sharp pain in my temples, like someone is sticking a knife in there. I feel my hands, which feel like they’re on fire, as the burn from all the use of the day. I feel like my lungs are too weak to open, and sometimes I hold my breath because I don’t have the energy to lift them to breathe. I feel like I can’t move. I feel like I must be close to dying, I got to be. I feel like my heart has been working so hard that surely it will give out at anytime.

And as I feel all these things, I have to pretend like I don’t. If I’m going to get any sleep, I have to put my mind somewhere else. My mind turns to school, no that’s definitely not going to put me to sleep. As I struggle to find rest I watch the clock go from 11:30 to 12:00 .. to 1:15… to 2:05.. Well at this rate I’m going to get no sleep at all, and I’ll wake up tomorrow feeling twice as bad as I do right now. Getting up tomorrow will be worse than this morning! Maybe I’ll sleep in tomorrow.. No, I already took my day off for the week. And anyway, I have two tests and a presentation tomorrow, I can’t miss those. But right now I won’t be able to think straight for any class, and I won’t be able to do well in the least. But I won’t be able to make it up later, and if I put it off for another day, I’ll just be more behind and will do worse. So, tomorrow no matter how I feel, I will get out of bed, and I will make it through school, and homework, and another day. I will finish this week whether I keel over dead at the end of it or not. How do I do this? How can I push myself like this every moment of every day? It’s beyond me.

“I can do all things through him who gives me strength.” Philippians 4:13

Every day brings its own obstacles and exciting experiences, no one day is quite like the last.

I long to make each day count, to look at each one like it is its own adventure.

Let’s begin another one. 


  1. I'm so sorry Anna. Reading your post makes my stomach church in knots. Wish I could do something to relieve your pain. Praying for you! Sending love from NoDak!

  2. I feel bad responding, because I always (well, often) write a response to your updates, but you don't know me, and I feel you or others may think it might be inappropriate or forward of me. But there is something here that transcends mere formal social custom or appropriateness. There is a human spirit, a longing, and a need in all of us. There is the need for love, for connection, for human understanding. I feel that this is so alive in you--it is so pure and radiant. Your body may be failing, but there is so much life in you--I feel it in your words, in your power of expression. Although you are weak in body, what is it in you that can produce such a beautiful and articulate expression of your suffering? Your trials are peeling away your worldly personality and all those attachments that come from your society-conditioned persona, and it is leaving a pure and radiant heart, with pure longings for love, relief, and happiness. It is so beautiful, it is so heartbreaking; it has elicited so much love and compassion from my heart. It has made me cry for your pain, but at the same time it has brought me hope, joy, and love, and I feel less alone.

    My life is almost constant suffering, not due to physical pain, but due to loneliness. I feel like you do in the morning, and also during the day, but my pain is emotional and psychological. Not because of any illness, mental or otherwise, but because I do not fit into the games people play in this world. It appears as though you are feeling something similar. The previous joys of worldly life are eluding you, and there is a disintegration of that very self that found comfort and participation in that life. I feel the same way.

    So there is the part of you underneath your worldly mask, beneath the part of you that upholds your self-image for people. That part is closer to the truth of who you really are. By expressing your real suffering, by feeling free to let go of your mask and the constraints of your social persona, I can feel the underlying spirit of purity, hope, and longing shine through. This is what really unites hearts and souls, not the games and joys of this passing world. This lesson is being revealed to you. It is your sincere longing and need for connection, for relief, for love, that will bring you closer to God and to others (at least in a real and spiritual way), and not your ability to live according to some set of rules, behaviors, or standards that you or others think is 'spiritual' living. Of course we haven’t found a way to be so honest and real and still be able to fit in to the way society has been designed! It has been designed for healthy, happy people only, it seems. And there isn’t enough love and understanding to make us feel safe, and for people to accept what is going on inside us under our masks and personas!

    There is a deeper, spiritual life that is not based on any worldly personality or self that has been conditioned by society and its people. We have an eternal and spiritual self, a soul, and that soars in the heavens. It is with that self that we can experience joy and live eternally. But few have found a way to live in this physical world from the place of this eternal mystery. We have been taught how to fit in to a materialistic society and we have constructed a false self in order to function within its 'rules'. But your false self is being purified and I see, through your writing, such a purity that will attract spiritual beings, and enable you to have communion in the spiritual worlds.

    Thank you for sharing your pain. The purity from your writing has touched me deeply and I feel much less alone in this immense struggle called existence. Of course I felt such deep love and compassion while reading your story, and that, in itself, is healing to my soul.

  3. dear Anna,

    thank you for sharing your personal struggle with honesty.As i told you before i do feel absolutely connected to you,i do feel really close to you and your everyday fight because of our common disease.I do not know you in person but i do know how it feels like and i do know what you have to deal with because i have been there and i am still there.Anna in my personal point of view you need to focus on the fact that in spite of your undeniable difficulties which are constant you are still an active person ,you are still a beautiful young woman who is able to take care of herself..get up,get to school and do the very best she can in order to have a "normal" life.You are alive and you are trying...isn t that what everybody does under all circumstances?We are alive..and we try to do own very best..everybody has obstacles..everybody needs to adjust to difficulties of all kinds..Yes,some perople like you and i need to fight harder...they need to fight for everything but this is a reality for us,we need to accept it and focus on our possibilities to improve our everyday life instead of focusing on limitations created by the disease.We need to be in charge of ourselfs,we need to be in charge of our life,we need to explore every tiny possibility of relief.Nobody else is gonna do that for us.We need to take matters into our own hands and we need to do that with a positive attitude,with the firm conviction that it is possible to have a better quality of life in spite of scleroderma.
    Anna,please rememeber i am here for you if you need to talk about anything at all.
    I am sending you love and light from my country Greece

  4. Dear Anna,

    Your words are eloquently put and I can feel the deep pain you and undergoing. I can only imagine how hard school must be for you, and it warms my heart that you have the strength to persevere. Keep at it. AIM HIGH. My thoughts and prayers go out to you.