When life punches you in the face

Hiiiii friends.

Long time no see! Or talk. Or blog. Or whatever. Long time no something. Here’s a pretty photo of what it looked like here recently!

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This is definitely the longest I’ve gone without writing a new post since I started this blog three years ago. It’s also the first time I’ve skipped an entire calendar month. Time is kind of foggy for me right now. It feels like it is dragging on forever, the days sometimes unbearably long, yet time also seems to be passing very quickly, and that email I read yesterday and was going to respond to the next day has actually been sitting untouched in my inbox for a week and a half. It’s a little disorienting.

I also composted a pair of socks and put some crackers away in the fridge instead of the cupboard, so clearly it’s not just time that has me mixed up these days.

But anyway, my sources tell me that it’s now the middle of February so there you go. (That sentence used to read “the beginning of February” because when I started writing this it was in fact the beginning of February. See above, re: the passing of time is confusing.)

Things with me are mostly the same as they were at the end of last year. Quite a lot has happened since then, but so far no answers as to what has been going on and why I’ve been so unwell lately. I’m still waiting to follow-up with some people, I’m still waiting on some tests, and I’m also waiting to see some new people who I don’t get to see for another few months.

In the meantime, I’m still humming along and doing my best, but it’s hard. And frustrating. And tiring. Some days I think I’m feeling better, but the truth is that I’m just getting used to this. I’m doing the thing that people with chronic health conditions do when things go downhill and stay down for a while, and I’m adjusting to this reduced level of functioning. I’ve done it before. On the one hand, this adjustment is helpful so that you stop waking up every day thinking why is everything so terrible? On the other hand, it’s discouraging when you look back at where you started and realize just how many adjustments you’ve had to make over the years.

Mostly, though, it has nothing to do with one hand or the other, but rather it’s an “it is what it is” shrug of the shoulders.

On the plus side, when I go to appointments now I don’t have to worry about whether or not anyone will believe that I’m sick because these days I actually look how I feel. As twisted as it might sound, this is actually validating. I’m not thrilled about the growing list of people who have expressed concern for me because of my appearance, recent additions including my pharmacist and the guy who delivers my TPN, but it’s also comforting to know that it’s not just me, that they see it, too.

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Do I look healthy or what?

Last time I saw my family doctor we discussed how I wasn’t feeling or looking better, and how it kind of looks like I got punched in the face and am recovering from two black eyes. And then we decided that life is the one who punched me in the face. And then we laughed about it because in a situation like this, what else do you do but laugh?

Anyway, that’s where I’m at.

Now, the real question is, besides laugh about it with your doctor, what do you do when life punches you in the face?

I feel like the answer here is maybe supposed to be punch back? I don’t know, but that sounds like it requires a lot of energy which I don’t have, plus I’ve never really been one for punching. And then there’s that whole an eye for an eye business to watch out for.

So, no punching back. Instead, I’ve chosen content as my one word for the year and I’m putting all of my energy into that. By the way, I mean content as in a state of peaceful happiness, not content as in the contents of something. Content, as in contentment, as in feeling content. It’s also important to note the difference between being content and being complacent. I may be getting used to this, but I’m not complacent about it. I haven’t given up. I haven’t resigned myself to a life of looking like life’s punching bag. Not yet, anyway.

I’m not complacent. I’m just content. Or at least I’m trying to be.

My life looks a lot different than usual these days. I can’t stay awake all day, so I sleep every afternoon. Despite the eternal list of things I want to crochet, I don’t have much energy for actually crocheting, so I’m turning away orders and sometimes letting days go by without picking up my hooks. And being social, even just via social media, has been particularly draining lately, so I’ve got close to one hundred unchecked Facebook notifications from two weeks of mostly avoiding it.

None of this, however, means that I can’t be content. It certainly makes being content more of a challenge, but it doesn’t make it impossible. It’s always harder to feel happy and peaceful when things aren’t going well, but that’s when making the effort matters the most.

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So I’m making the effort. I’m making the best of things. I’m letting myself just be still. Even though things are pretty tough right now, I’m still finding moments of contentment every day. It’s not perfect and it won’t be enough forever, but it’s something, and it’s enough for now.

And at the very least, it’s better than an eye for an eye.

 

 

Keeping the faith

And here we are at the end of another year.

It’s time for that reflecting-on-stuff thing we humans tend to do in preparation for the fresh page we like to envision ourselves starting on when the day, month, and year switch over all at the same time.

In some ways January 1 is just another day, but in other ways it is more significant. Budgets reset, health insurance deductibles start over, and other financial-y things that I don’t really understand probably happen, too.

But not everything resets when we put a new calendar up on the wall (that is, of course, if you are the kind of person who uses an old fashioned wall calendar…I happen to be that kind of person). Most of our problems, those stresses and worries and unknowns that we carry with us, well, they don’t just magically disappear when December 31 switches over to January 1. They’re still there. Still problematic, still stressful or worrying or unknown.

And that’s kind of where I’m finding myself at the end of this year.

Now we’ve come to the part of this post where I get all honest and tell you about things like being frustrated and crying.

The last several months have been pretty tough for me. Some really awesome things have happened and I’m grateful for all of the kindness, encouragement, and generosity, but things have still been tough.

If you’ve seen me recently this probably won’t surprise you because I don’t look very healthy. That’s not an opinion or an insecurity, it’s just a fact, and a fact that concerned my GP when I saw her last week. My already pale skin is vying for the title of palest of pale skin in all the land, and its effort is matched only by the dark circles under my eyes. Apparently under eye semi-circles are out and dark circles that encircle the entire eye are now in. At least that’s what my face seems to think.

I’m really not surprised that I don’t look my best, though, because I don’t feel my best, either. I’ve been really struggling with energy. I’ve been doing things when I can because that’s healthy and important, but most of the time I do anything I feel crushed by fatigue. Even things that should be easy like talking and going upstairs. It doesn’t seem to matter how faithful I am about doing my PT exercises, overall weakness keeps dragging me down. And everything seems to leave me short of breath.

At first I wasn’t concerned about any of this because I was anemic and these are all symptoms of anemia. Iron infusions would help that. And since I know that blood counts don’t return to normal the second the iron enters your bloodstream, I just assumed that there were no improvements yet. But then blood tests from last week discouragingly showed that I’m responding really well to the iron and that my labs are improving. I say discouragingly because my numbers have improved enough that I should feel significantly better.

But I don’t.

There are other frustrating health things happening, too, but I’ll complain about those another time.

For the most part, I’m a pretty patient person. Especially when it comes to health and medicine. I wait for appointments. I wait out nausea and pain. I wait for months before bringing a new symptom to anyone’s attention, hoping it will go away on its own without me having to bother anyone. I’m not trying to martyr myself, but I deal with a lot because this is my life and I have no other choice.

I don’t make a fuss very often, so when I do make a fuss and I do somewhat desperately ask for help, it’s because I really need it.

And that’s just what I did last week when I contacted my TPN team, the people who are entirely in charge of my nutrition and fluid intake, and basically said hey I’m not okay is there anything we can do? Could the values that are out of range be contributing to the awfulness that I feel? This is where the crying comes in, because the TPN team basically said everything looked really good (they were looking at my routine labs and not my face) and they had no concerns. I’m not sure why a normally cheerful patient saying they feel horrible and fighting back tears on the phone isn’t a concern. To be fair, they’re good medical professionals and it’s hard to do things over the phone and around the holidays when people are away, and so I’m hopeful that things will go better when I actually get to see them in a couple of months.

But in that moment, I felt completely dismissed. And on my own. And I cried it out because sometimes you just need to do that. There’s a reason the phrase “a good cry” exists.

So now what? Well, thankfully I have an amazing GP who, when I emailed her later that day, replied and made it clear that she was going to help me figure things out.

img_0961And in the meantime?

I am keeping the faith.

(I am also existing mostly as a floating head above a lump of blankets…haha I guess sometimes people are potatoes after all.)

As this year comes to an end, I find myself tired and worried and pretty worn down, and none of that is going to change overnight. But that’s not the entire picture.

I am still holding out hope that slowly but surely things are going to improve, that my body just needs a bit more time. I am trusting my doctor to advocate for me. I am counting on the people around me to help keep my spirits lifted. I am making plans, and setting goals, and carrying on, because what else can I do?

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Let us not forget about snapchat filters that make us look better than we actually do.

What else can any of us do?

Tomorrow we put up our brand new calendars as we start a brand new year, but we also just carry on from this year. Those financial-y things reset. We don’t.

But we do carry on. We rally. We keep the faith. Because what else can we do? …and also because there are lives to be lived.

And experiences to be had.

And joy to be found. Always.

Happy New Year!

 

Just a quick follow-up

Remember when I shared with you that CTV article from about a month ago? No? Here it is again in case you missed it.

After that was published, some really cool things happened!! And now there’s a follow-up story all about the amazingly kind and generous response from readers and how they created some holiday magic for me. Check out the link below!

“Finding my Miracle”: Communities give back after CTV Vancouver story

I’m still so touched by the kindness and generosity of strangers.  I love stories like this, where people step up to help out or bring joy to people they’ve never met, and it is both humbling and thrilling to find myself on the receiving end of that thoughtfulness. I am very grateful for this entire experience!

P.S. If you ever want to follow along with my yarn adventures or see what I’m up to in terms of crochet, you can find me on Instagram @carefulscrochet.