Deep Thoughts on a Thursday
I’m having a hard time putting my thoughts into words. Which is why this blog has consisted mostly of Well-Being Wednesday posts for the past couple of weeks. But I don’t want to disappear from this blog again. And I don’t want my blogging to become halfhearted, either. So instead of writing a half-assed Well-Being Wednesday, I spent my time writing this, to share something that’s been swirling around in my head for quite some time.
Expectations. Learning to ask for help. Loneliness. The invisibility of CF.
What I’m struggling with right now involves all of it.
Most days I’m okay. I live my life like many 27 year olds. And I’m able to detach myself from the cystic fibrosis label. I think that’s a good thing.
For the most part.
The downside is that the severity of what having this disease means is often invisible.
Just yesterday I spoke with a man who lost his wife to CF at the age of 41. That’s only 14 years older than I am now. And it TERRIFIES me. Because that’s the reality of this disease. Unless a cure is found, it will kill me. I often tiptoe around this fact because I try to remain positive. But sometimes it feels good to be honest. To show people the ugly side of CF.
I’ve said it before and I’ll say it again: I don’t want pity.
But there are times where I do need acknowledgement. Support. And the understanding that it’s a heavy load to carry.
I can’t do it alone.
I want to make it clear that I appreciate how lucky I am. I have an incredible family who has been there for me at every bump in the road, and continues to be. And I have a boyfriend who deals with much more than most 28 year old guys. He goes above and beyond every.single.day.
But there are times I’m disappointed by people.
I would like to think that if I had a friend or loved one battling something as big as a terminal illness, I would help in any way I could.
And I have both family and friends that do this. They know who they are and I will be forever grateful for them.
There are also people who don’t. There could be a million reasons for this. Me not communicating what I need. Them not understanding the seriousness of this disease. Me expecting too much. The list goes on.
What I struggle with is knowing what to do. Write these people off? Accept them as they are and know who I can count on? Verbalize my feelings?
Being one of 30,000 with a disease there are no in-person support groups for is lonely. Having people rally around you when you need them to makes that loneliness a much lighter burden.
“Every day, think as you wake up, today I am fortunate to be alive, I have a precious human life, I am not going to waste it. I am going to use all my energies to develop myself, to expand my heart out to others, to achieve enlightenment for the benefit of all beings. I am going to have kind thoughts towards others, I am not going to get angry or think badly about others. I am going to benefit others as much as I can.” ~ Dalai Lama
Well-Being Wednesday
Last night I promised myself I’d go to yoga. I knew my muscles could use the stretching, especially after the training I’ve started, and I always leave feeling peaceful (who doesn’t need that?).
By the time I left work and got home, I knew it just wasn’t happening. Too many thoughts/worries/to do’s were crowding my head – namaste-ing myself into a place of relaxtion would be impossible.
So instead I went home. I made dinner, got my treatments finished early, caught up on Grey’s, and wrote down a few words for an event I’m speaking at tonight.
I was able to get to bed earlier than usual, and with a clear head.
Sometimes taking care of your well-being is knowing when to say no. It’s easy to talk yourself into things because they’re good for you, but it never hurts to take a break.
Well-Being Wednesday
This week I’ve been in a much better “mental state” than last week. I already feel like I’m well on my way to taking care of my well-being!
As I’ve mentioned before, I started the Couch-to-5k program on Monday and Day 1 went pretty well. Getting back in the gym and knowing I was doing something good for my body (and lungs!) felt like progress. I even managed to drag myself out of bed this morning to complete Day 2. I know that getting into a habit is key to sticking with just about anything, so I’m doing my best to keep going.
I’ve also been eating much better: broiled salmon, sauteed kale, brown rice, etc. (There have also been a few Trader Joe’s dark chocolate peanut butter cups in there, but it’s all about balance… right?)
I had an acupuncture appointment this morning, one of my favorite ways to start the day. I always come out feeling relaxed and peaceful, just what I need halfway through the week. I wish I could do this every day. If I win the lottery one day, this is going on my “must-have” list!
Tonight’s agenda includes making chili, catching up on last night’s “Parenthood” (I am OBSESSED with the Bravermans), and more reading of One Day.
How did you tend to your well-being this week?
If you won the lottery, what would be on YOUR “must-have” list?)
Any other “Parenthood” fans out there?
As Promised…
I did it! I completed Day 1 of Week 1 of the Couch-to-5k program. And it wasn’t too bad. Surprisingly, my legs seemed to give out before my lungs… not sure what that says about what shape I’m in, but I’ll take it!
I’ll admit, I really had to convince myself to go to the gym once work was over. But knowing that I’d already told the whole internet (okay, just the 5 of you who read this blog) my running plans, I couldn’t back out.
I need to be held accountable so I’m leaving it up to you guys to help me! I’ve loved all your advice both here and on Twitter, so keep it coming 
As for the rest of my evening, it was surprisingly productive. I made a quick and simple dinner of steamed kale, baked sweet potato, and toast.
I followed that up with an hour of medicine while watching Sunday’s episode of “The Good Wife” (love me some Josh Charles, and it doesn’t hurt that he’s from Baltimore).
I read some of “One Day” (anyone read it?) until my eyes got heavy and was asleep by 11:00.
It was just the night I needed to get me on track for the week!
What to you do to stay on track?
Run Away With Me
This weekend was just what I needed: lazy.
Friday Mike and I had a hankering for some Five Guys, which we ate outside in the gorgeous weather, followed by drinks & dessert at a local bar. We ended the night relatively early which meant plenty of sleep!
Saturday was devoted to errands followed by more TV (it sounds like I might have watched too much…) thanks to Hulu. Some more sleeping in on Sunday gave me just the rest I was looking for!
Thankfully, this week has been off to a much better start than last. I’m in a far better mood and am ready to tackle my growing to do list!
And a big part of that is getting back to the gym. A week or so ago, after a disappointing Hopkins appointment, Renee offered to run with me once a week to help get in some much needed cardio. Unfortunately, due to a crazy couple of weeks, we only managed one run. But it was decent, and inspired me to follow her advice: start the Couch-to-5K running plan.
Today will be the first day. I’ll check back in tomorrow to let you know how it goes! (Fingers crossed I finish even more inspired to stick with it.)
In the meantime, I’d LOVE to hear how you stay motivated, along with some tunes that get you in the running groove.
Well-Being Wednesdays
This week’s been a little trying. Nothing life-altering, just one of those weeks where I can’t seem to get out of a funk. I’m learning that during these periods, it’s especially important to be kind to myself.
Hard week or not, it’s always good to step back and make sure you’re tending to yourself. Right now, that means eating good foods, making sure I get in some yoga, picking up a good book, and spending time with loved ones. It also means banishing negative self talk, something I find myself doing when I’m feeling down.
That’s where Well-Being Wednesdays come in. According to Merriam-Webster, well-being is “the state of being healthy, happy, or prosperous.” Each Wednesday, I’ll talk about what I’ve done this week to make sure I’m staying in a positive place.
I would love to start a conversation about what well-being means to YOU and how you maintain it, so feel free to share!
So tell me, how do YOU take care of your overall well-being?
