Wednesday, April 7, 2010

Let's be Realistic

This morning I woke up feeling like I hadn't slept at all. Normal occurrence for me.

I never really "woke up" today. Not normal.

Today's dazed, exhausted, nauseous, fatigued experience has reminded me has reminded me that my recent decision was a wise one: I am deferring my second semester until next year. Probably January, but maybe May 2011. I didn't even consider this option until after I went to Disability services at school last week to figure out what I would need to do to officially inform my professors of my disabling issues and request accommodations. Then a couple of days ago I was trying to figure out how I would pay for the second semester's tuition, all of which is due on the first day of classes. I cannot access the second half of my disability grant from the government in time for the second semester tuition deadline.

Then I realized that this is the first year of having this school payment grant for students with permanent disabilities that I felt comfortable accepting it. I felt I deserved it. Needed it. The difference this time is that accessing funds isn't my biggest hurdle. Physically getting to and from school and finding the energy to do homework -- those are my biggest hurdles. I know now that I cannot meet them yet. Rest will help me more than money will.

I realized that there were no accommodations my professors could give me that would ease my symptoms and help me enjoy my studies. Not with the way I've been feeling.

I won't be going into school tomorrow (technically today, but my nap earlier threw my sleep schedule off). I don't expect to feel any better then, plus I need to save my energy to work on a paper. I'm really looking forward to sleeping for as long as I need to without feeling like I'm letting myself or other students down. It will be nice to avoid draining myself of energy so frequently.

I'm disappointed that I won't be able to finish school, start working and move out this year. I was really excited about that, but now I realize that these would be very unrealistic, unhealthy decisions. I feel foolish for thinking I would be ready, but I think I was just anxious to gain independence after staying home sick for seven months until January and then seeing my sister move from her apartment with her boyfriend to her own place by the beach. I think I should avoid looking so far into the future. I can still enjoy my life, of course. After all, I am a homebody! I don't mind being at home, playing with the puppy, listening to music, reading and writing. These are my favourite things to do. It won't be a full life, though. I thought school would give me a full life, even if I remained sick throughout my time there. Nope. That didn't give me a full life either because I was too sick to enjoy it.

I'm not really upset about my decision. I'm actually happy with it. This semester will end in late April and I wish it was sooner. I feel at peace about everything because I know I did the right thing. I'm proud of myself for facing facts and admitting that I just can't do this right now. I kind of feel like I've given up, especially because it's not like I wasn't doing well in school Most of my grades were really good. And I'm physically capable of going to class and doing the work. It could be worse, Ashley. You're lucky you are well enough to be able to go to school. It's that brutal "buck up/be grateful" mentality I keep drilling into myself. Guilt.

My parents completely support my decision to stay home. I feel bad for assuming they wouldn't. I was nervous to tell them. They want me to feel better. My mom had the good sense to book me an appointment with my internist. Of all of my doctors, i am confident that she is the one who will make me feel that I've made the right decision, that I really am suffering. I want her to rule out other potential health problems -- by "rule out," I mean that I don't expect there to be anything new. I also want her to refer me to physical and occupational therapy and suggest different treatment options for my heart.

I've made a lot of changes these past few days. I feel like I'm going backward.


  1. Ashley,
    Hang in there! It sounds like you made the right decision. School will be there when you are ready. Who knows maybe something else will come up, even with you at home; that will help to give you more of a sense of fulfillment or accomplishment. You can still write. I know it’s not of much comfort but things could be worse – a lot worse. You still have family and friends that love you. And nothing is more fun than a puppy! (well - OK that’s a big exaggeration, but a puppy is fun).

    One thing is for sure, things change. Be patient.


  2. Sounds like you are on the right track. Hope you get the rest you need.

  3. I know I keep saying this, but I think you are making the right decision. Taking a temporary break to give your body time to rest is an excellent idea.

    If I were you, I'd take my mom with me to the internist. The doctor needs to realize the severity of your symptoms, and that they were not always this bad, and he needs to figure out why they have worsened. Physical therapy is also an excellent idea.

    Also, about your leg swelling - my mom's GP said that her intermittent leg swelling wasn't anything, and didn't pay any attention to it. It turned out to be due to serious vascular issues, and having it go untreated for so long caused permanent damage. Doctors are not always right!

    Take care of yourself. You have worked very hard, and taking a break from school due to health issues is an understandable and sensible decision.


  4. You're not going backward, you're merely changing the timetable. You are allowed to do that, you know; this is your life.
    If you feel happy with the decision then it is the right one... perhaps the fact that you weren't able to access the funds is a sign. If you learn to listen, the Universe tells us quite a lot, in life.
    Give yourself a break and get some rest.

  5. Thanks so much for the support, guys!

    Robin: writing is very fulfilling and so are puppies. I know that it could be worse, of course, but that doesn't make me any less unsure of myself and frustrated with my situation.

    Ann: I hope the rest helps me too. I'm glad from an outsider's perspective, this looks like the right track. I tend to think others will not see it that way.

    Linda: I think I was worse before, actually. Still, I think you're right about the importance of conveying the nasty impact of my symptoms on my quality of life. My mom wants to come with me to the internist... I'd rather go alone, but she'll be much more assertive than I will! I appreciate your perspective.

    Terri: a change in timetable! That's a great way to look at it. I'll keep telling myself that.

  6. I'm sorry for the setback. You seem to be accepting of it, though. Feel better!

  7. You are making the decision that is right for you at this time. There will be a time when you are much better and school will be there for you. In the meantime you are going to do everything possible to get better, and you will.

  8. Thank you, Vagabonde. I'm still unsure if this was the best decision.

    I'm uncomfortable with comments like, "There will be a time when you are much better" because there is no way for you or anyone to know if that will happen. It just seems like the polite thing to say to try to help me feel better. I'm sorry, but I don't take comments like that seriously. If I did, it could just be false hope. I mean, I have a feeling I will feel better over time, but we can't REALLY know if that will happen, mainly because we don't even REALLY know what I am sick with exactly. The multitude of health problems makes it that much more complicated. It could be that the symptoms of Dandy Walker Syndrome have worsened with age. That can happen. No doctor has been able to tell me if Dandy Walker will improve - if that's the root of my issues.

    I just don't want to hope for things that may not happen. I'm not interested in blind faith, especially given my entire life's health history. I'm not being pessimistic or jaded; I'm being realistic. It's more therapeutic and constructive for me to figure out how to cope with this and accommodate myself, than to hope that it will all get better.

  9. I meant no doctor has been able to tell me if the SYMPTOMS of Dandy Walker will improve. The malformation itself, won't.

  10. One day at a time is a good rate to aim for...It takes off all pressures.

  11. Thanks Jinksy! That is a definite positive of one day at a time. I hadn't thought of it that way. I just do what I can. If I think I should pace myself, I do, but I don't want to limit myself either.