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!
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.
Do I look healthy or what?
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.
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.
Finding my Miracle 
This is the second time I have written this post..as I accidently hit the back arrow. I want to say thank you …for making this an election issue. I have auto immune issues….wegeners and sjogrens…and I live on my own….without family support. It is getting harder and harder to survive ….food, clothes, computer. Its been over 10 years and I am not in a position to repair or replace anything….like my computer(died last summer), which I used to stay in touch with family and friends….and to do data entry whenever I got the chance(working from home)..but I need a high speed , high memory computer to do that ..which is around 1000.00….something I can’t dream of affording. So now I use my phone to do as much as I can. I can only hope and pray that something is done. Thank you for going public about this…it takes strength to do that…..sending hugs, Lisa
Hi Lisa – oh wow, that sounds so challenging! With the unclear election results it’s unclear what’s going to happen with disability payments here. I can’t imagine how hard it is, but you’re doing a really good job making it work with what you have. And super awesome that you’ve been able to adapt quilting, too! I want to learn to quilt and got some supplies for it for Christmas a few years ago, but I just haven’t had the energy to make it happen. A few sewing projects here and there though…lol I’m getting pretty good at pillowcases 😉
Pillowcases are a great start….let me know if you want any help with quilting, when you are up to it….hugs.
Hi there. I hope you are holding up alright. Looking forward to hearing from you again when you are able to write. Good thoughts.
-Kate
Catherine, I want you to know I think (and talk) of you often. Sending hugs, prayers, strength and contentment your way. Love you!
This is many weeks delayed…but thank you!! Your comment made me smile way back when I first read it 🙂
Well, I’m really having similar days where I just dont feel like I can get over the mountain this time…and it scares me, and frustrates me, and makes me feel like the reality is that I am getting worse in spite of my attempts to fight. You always give me some strength, some hope, some courage: I hope I can give it back when I’m able. Your words always mean so much.
Susan Marshall
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Hi Susan – I completely relate to that fear and frustration, and I can tell you that the strength and hope come in waves and are definitely not constants. It’s a habit that takes lots of practice, and even still it falters. Give yourself time and lots of patience, as you would a dear friend, and you’ll get there ❤
Wow you just change my way of thinking
Dear Catherine,
I’m sorry that your illness has taken this turn and I am sitting in the middle of a circle of descriptive words trying to work out the correct one(s) to use! I’m between ‘impressed’, ‘in awe’ and ‘appreciative’ (but none of them contain the right nuance) that you managed to write this post on your blog under the current circumstances. I can’t imagine how many days it must have taken. “Congratulations!” on getting it done and I hope you feel the sense of achievement you deserve for it.
I know what it is like to be unable to get through a day without succumbing to the need to sleep the afternoon away, only to be ready for bed again straight after dinner. I’ve lived those days when it is impossible to even sit up at a computer let alone read or write anything at length. While those words listed above do express much of my response to your post, none of them fully appreciate the effort involved in daily tasks that healthy people take for granted. Therefore, I hope it doesn’t sound trite when I say “Well done!” to you with all my heart, even though it is saddened that you are struggling so.
Thank you for making the distinction between ‘content’ and ‘complacent’, also the difference between ‘feeling ok’ and ‘getting used to it’. These concepts could spark a whole new tangent of conversation, too long for a comment box.
Thank you for the pretty photo. Your winter landscape is so interesting because it doesn’t snow where I live. A snowy winter colour palette is different to anything else I have seen.
Wishing you some good news and an improvement to your health. Hang in there, Catherine!
Hugs,
Jodie
Catherine I’ve been following your blog and story for a while and bless your heart for being so accepting and patient. I am praying to help you be content! At the same time I’m praying for some “punch back” for you from the community. I’ve experienced some serious illnesses and I think I understand what you mean when you don’t have the energy- but that’s when it’s our turn and I am punching back for you!! With love and staying true to my (married) name Sandy Battle.
Thanks so much Sandy!! I so appreciate the support 🙂
Catherine: Many of us have been thinking about you in the last few weeks and praying for your body to respond for the better. You do inspire so many people with your attitude, and we are all so grateful. I hope you discover what is holding you back at the moment and can get back some of that energy you had.
You never fail to inspire, amaze and impress me. And yes – you do look like you’ve been punched, but you are fighting back with your usual dignity and class. No matter what the day (or night) has handed you, you always find a way to bring a smile to my face. My heart is full of gratitude for you!
Love Mom
I’m in this place myself right now…thank you for saying it all so eloquently…..hugs x