There are already things that have definitely changed for me...
Right now, I am eating to live, not living to eat. Sometimes food tastes good to me and sometimes it tastes like nothing.
Days that I get up, get out of bed, put on real clothes and do more than stare at the walls are what I consider good days.
Right now, I feel like my brain is mush and that I am walking at a snails pace.
My therapist cancelled on me last week, and I really needed to vent. I cannot wait until this weeks appointment. My surgery has me so worried and anxious. I have so much I need to get off of my chest, and I hate having to wait a week to do so.
When I walked out of the Cardio-Thoracic Surgeons office, I felt like my world was about to be changed forever. I mean, when I got all these crazy insane diagnoses of different kinds of Vasculitis when I was in the hospital, I knew my world was completely changed forever; especially when my Rheumatologist told me that I am terminal. But, for some reason, learning about what all my surgery entailed scared me more than a terminal diagnosis.
My heart-rate has yet to slow down even though I am finally getting tapered off of the Prednisone. Have I mentioned just how much I hate Prednisone? I have yet to stop the vomiting, and the fevers just keep coming. So, for the past two weeks, my bed has been my resting place and my room has been the entertainment for the kids and the animals.
I start home-schooling the kids tomorrow, and I am determined to actually be able to sit straight up behind my desk and teach them from the study instead of from the confines of this stupidly depressing bedroom. I am looking forward to teaching them. It gives me a sense of purpose and pride. I love how much they look forward to going to school with mommy as their teacher.
I visit my Primary Care Physician tomorrow so that I can get a referral to a Cardiologist and a better Pulmonologist since the Pulmonologist I am currently seeing seems to be some sort of a moron. He sits behind his computer the whole time I am in his office. He never checks my lungs or seems to be really listening to me. So, I decided I deserve better than his lack of care.
My go, go, go attitude that I once had before I got sick doesn't really work for me anymore. It is nice though to have those random moments when I can push my body and see just how far it will allow me to go.
I think it's really interesting how we move through different phases of life and how we have to somehow figure chronic illness into that.
The reality is, I have seen my body change in a myriad of ways over the past year since I have been sick. And I think it's a really different aspect of being chronically ill that you really don't have any control over. Your body changes- whether it's from the ravage of the diseases you have or medication side effects- and you're completely helpless to stop it from happening. You have to sit back and watch it happen. And so do the people around you.
Sometimes I feel like when you're chronically ill, it's expected that you'll evolve and not worry about superficial aspects of your life. But, for me, the steroids have made me gain weight, weight in which I worked so hard to keep off. The steroids make me agitated, frustrated, break out in acne, get thrush over and over...and I cannot help but become depressed by the toll the steroids are taking on my body.
The truth is, one of the most stunning aspects of being chronically ill is looking in the mirror and not recognizing the person that is staring back at you, whether the lack of recognition is due to literal or figurative changes. I do try so hard to be realistic about my situation. I try to keep my mind occupied and remain as positive as I can. I try to cut myself some slack when my illnesses or my medications change my body, but sometimes it really is more frustrating than being in literal pain.
These days, I have a list of things I have to do that never all seem to get done when I want them to. People without chronic illness don't understand; and they don't realize that it literally means I could be out doing something and get sick and have to lie down right then and there.
I am running on fumes. Less than fumes. Not even on reserve. My reserves are gone. I can literally be stopped in my tracks. And it has caused me great anxiety when I am away from home and running low on spoons. It even causes me anxiety when I am at home and realize I don't have enough spoons to even cook my family a meal.
I don't have copious amounts of energy. I have to pick my battles wisely, and sometimes bow out of battles altogether. And this state of affairs bothers me immensely. I don't want to have limitations. I don't want to say no to things, but I don't have a choice.
For most of us with chronic illness, our days are variable. Some days are good- we have more energy and less pain- and some days are bad. Some days all my spoons get me is out of the bed, a shower, and a meal. Some days- rarely anymore- I feel like I am my healthy self again.When all my spoons are gone, they're gone, and I can't bank them from days when I don't use that many. It's always a finite number of spoons.
It's easy for people who aren't chronically ill to be judgmental and use terms like lazy, aloof, or uncaring. But those characterizations couldn't be further from the truth. I would give anything to do everything I need to do everyday and not have to take time off after a particularly hard or busy day. But,that's not the reality.
It's weird to think that illness might have been a gift. It's kind of a macabre thought. But, as I look back, I could see ending up insanely unhappy if I would have stayed directly on the path that I was on. It took illness to make me see what was truly important, and what I am truly passionate about. This is my story and this is only the beginning. This is my life, and no matter how hard it may be, I love it just the same. I am able to take all the time I need and enjoy just being alive with my family. I am happy even on the worst of days.
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