When you are living with a chronic disease, finding other
people who are going through the same thing is so, so comforting. Knowing
someone who can relate, it makes you feel not so crazy, or at least not alone
crazy. :)
When I stumbled across this post, How To Deal With Chronic (Illness) When It Affects Your Family. Friends, and Social Life, it hit home. After reading it, I cried. I'm not alone! Though what she deals with is chronic pain, after reading this I learned that it's still the same struggle as someone dealing with a chronic disease. In my case, cancer.
When I stumbled across this post, How To Deal With Chronic (Illness) When It Affects Your Family. Friends, and Social Life, it hit home. After reading it, I cried. I'm not alone! Though what she deals with is chronic pain, after reading this I learned that it's still the same struggle as someone dealing with a chronic disease. In my case, cancer.
My life has completely changed since being diagnosed with
CML, and so have relationships in my life, and not in a bad way. My
relationships with my family and friends are still just as close, but what I
can and can't do now has changed. If I had to pick two words to describe how I most always feel, it would be tired and nauseous.
Actually, tired might not be a strong enough word. Maybe exhausted fits better.
I still look like the same ol' Dana on the
outside, but I'm completely different on the inside. I have *gasp* limits now. I can't
stay up late, I can't have a jam packed day, I have to be careful of what I
eat/drink because it might make me sick, I'm constantly tired, exhausted, I usually don't
feel well, especially in the evenings (and I'm not even 30 years old!)-- all things you can't see (aside from when I'm throwing up of course <-- your welcome for that visual), and that's probably been one of the more difficult parts-- I love
when I hear people say " I completely forgot your are sick." That
means I do a good job of managing it and living a 'normal' life. But on the flip side, because of that, people assume what I'm
going through isn't that bad because I do manage it well , I hide it well, and I
don't look sick. And because people often forget I'm sick, then they often
don't understand why I don't or can't do certain things, and it may come off as
me being rude, not a team player, or a flaky friend. When really, I'm being
quite because it's hard to be engaged in what's going on or in a conversation when I don't feel
well, and I'm not hanging out because
I just have no more energy to give.
Every day is a battle. I never feel 100%. Some days are better
than others, but a struggle non-the-less. Someday I can breeze through work. Others, I'm
giving it everything I have just to make it to the end of the day, and
sometimes I don't. Most days once I get home, I'll cook dinner and help Talon with homework (and sometimes those things don't even happen) then I check
out for the day, I'm dunzo, my body can't handle anymore (which is also why I rarely blog anymore). I'm almost always in bed by 9pm. And that's not just because I'm exhausted from the day, it's also because that's when I generally feel the worst. I take my medication for my leukemia after dinner for two reasons-- 1. I have to take it on a full stomach or it will make me sick. 2. Even on a full stomach I'll still most likely get sick, and the evening (after work) is the most convenient time to be sick, if there is such a thing. Sometimes it passes on, most times I have to take Phenergan (which knocks me out), and other times nothing works so I try to sleep through it. There's been many days that I've gone straight to bed as soon as I got home. And to think, just a
few years ago, I was working full time, in college, a homeowner, and a single
mom. My day would begin at 6:30am, and end at midnight, or later. And I could
handle it. I remember people always saying, " I wish I had your
energy," or "how do you do it?" or "enjoy it while you can
because when you get older, that will change." I didn't realize that would
be true just a couple of years later. Now I'm the one asking those people
how THEY do it. I miss being able to do it all. .
The person writing the article put it well--
"The ongoing uncertainty about how we’ll feel each
day makes planning impossible. It’s hard to make plans because we can’t be
sure how sick we’ll feel or how (fatigued) we’ll be in on any given
day. Even after I’ve woken up, I don’t know how I’ll feel as the day
progresses because my symptoms can flare at any moment.” <-- can I get an AMEN!
And it's not that I don't want to make plans, go out and do things, it's just that I worry I'll end up not feeling well and don't want to take a chance on ruining someone else's time. So I normally just, don't. And when I do, it creates so much anxiety. I have to create a plan ahead of time of what I'll do if I get sick. Will it be a big deal if I have to leave? Will the people riding with me have another ride so they can stay and not be forced to leave with me? Do I have water? Phenergan? Sour patch kids? Is there a bathroom nearby in case I need to throw up? Is there a place for me to lay down if needed? Pure anxiety.
This anxiety over realistic fears have prevented me from
going on trips and doing fun things that I used to be
able to do.
I remember my first experience dealing with this--
It was not quite yet a year since being diagnosed. At the
time, I had a friend who was friends with Aaron Lewis (once alternative, now
country singer). I had a once in a lifetime opportunity to fly on a private jet
with Aaron Lewis, Craig Morgan, and Thomas Rhett (more country singers) to a benefit concert in
Massachusetts and while we were there, we were also going to tour a gun factory. This was a one day deal-- leaving that
morning, would return very late the evening. I knew I would be pushing my
limits but it would be worth it. That was until I got sick the night before. I
was dehydrated and had a horrible headache the next morning. Even though the nausea
was gone, I still wasn't feeling quite well. What if I get sick again? What if
I need to lay down? There will be no place because we will either be on a
plane, in a car, in a factory, or near a stage with hundreds of screaming fans. And how embarrassing
would it be if I did get sick and they had to cancel the tour or any of the
other plans because of me.
So I had no choice but to cancel.
Just this past Thursday, I went with my husband and some
friends to the KFC Yum! Center in Louisville to watch the Cats play. Actually, we went for the day to watch all
4 tournament games, something that my husband was totally pumped about. In
theory it sounded really fun. The day before, I started to second guess myself for signing up for such a big venture. Out for 12 hours? Can my body handle it? I
really don't feel confident that it can. What if I need a quick caffeine fix to
help give me energy, I'll be out of luck because all I can drink is water and
some teas. And the Yum! Center won't have tea. I mean, it's the Yum! Center. And if they do have tea it will probably be too sugary and I won't be able to drink it anyways. What if I accidentally eat
something that makes me sick? I better bring a blanket and pillow in case I
need to camp out in the car because I could never ask my husband to leave early
when he's been so looking forward to this.
Last weekend, Talon had a baseball tournament in Bowling Green and since his games were so early Sunday morning, my mom and I decided to just stay the night. We had some free time Saturday evening so we went to the mall and not even 30 minutes into the trip, I had to spend the rest of our time in the
bathroom figuring out if I was going to throw up or not, because I felt that nauseous. Of course my mom suggested that we leave and
go back to the hotel so I could lay down but I refused. I didn't want to ruin
their time because of me.
They give me passes, Cancer Passes, just like my sister made me. :) And because of that, I am so completely grateful.
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