Happy Hopeful New Year

HOPE

Just over three months ago I wrote a post called Waking Up about how after months of living in a nightmare things were finally getting better. But then about two weeks later one of my doctors ended up stopping the treatment most responsible for that improvement to see what would happen without it. What happened is that it did not go well and I pretty much fell back into that nightmare.

It sucked. It sucks, actually. Because it still sucks. Because I’m still stuck in it. And we’re figuring it out but it takes time and work, and redoing work I already did. Which sucks.

Sigh.

I’m not ending this year the way I thought I would be, but it’s the end of the year nonetheless, which means it’s time for my end-of-the-year-thoughts blog post on this mostly-abanbdoned-throughout-2018 blog.

This year my end of year thoughts are a lot of what ifs.

What if my doctor hadn’t stopped my treatment? And what if it hadn’t taken three quarters of a year for that treatment to start in the first place? What if instead of assuming all my symptoms to be malnutrition for all those years doctors had believed me and recognized that something bigger was going on? How much nerve damage could have been prevented?

What if medicine knew nine years ago what it knows now? What if that doctor was right when she said that had I received the right treatment right away that I might be mostly healthy today? What if she’s right when she says it’s been too long and we might not be able to really help much?

And, shamefully, what if I lived somewhere else? What if I lived where I had access to the sub-specialists and the sub-sub-specialists and even the sub-sub-sub-specialists that just don’t even exist here, but that would know best how to help me?

It’s just been a hard year.

With unnecessary suffering. I’m pretty accepting of everything; I don’t think of myself as suffering every day. I’m coping. I’m managing. I’m doing my best. I’m living. And sometimes there is suffering and it’s just part of it all, but this year a lot of it was unnecessary, which is harder to accept.

So anyway.

That’s where I’m at on this last day of 2018. Some really positive end of the year thoughts, hey?

But I’m writing it all out so that I can let it all go.

Well, so that I can try, anyway. I’ve been carrying all that around in a bulky, awkwardly shaped, terribly heavy suitcase and I don’t need that kind of baggage in my life. So at the very least the process of writing it all out is akin to putting some wheels and a nice pull handle on that suitcase so it’s easier to cart around. It’s a start.

But really, there’s nothing I can do about any of those what ifs so what’s the point of being bitter about them? I can’t change the past. There’s nothing I can do about nine years ago. Or nine months. Or nine days. Or even yesterday. All I can do is try for a better tomorrow. Except not literally tomorrow because I’m pretty sick right now and that doesn’t change overnight. Probably not nine days from now either. Nine weeks…eh…but a better nine months from now? Very possible.

And as frustrated as I feel, as awkward as that suitcase of what ifs is, it’s not the only piece of luggage I’ve got with me. There are some other suitcases of blah. But then I have a backpack of gratitude, and I don’t mean the kind of backpack you use for school, I’m talking about one of those big backpacks you use to…to backpack around places. (A backpacking backpack? Evidently I’ve never backpacked anywhere.) I’ve also got a duffel bag full of things I’m looking forward to. As well as a backpack, but a regular one this time, of things I want to learn and try. A hat box containing my sense of humour (Why a hat box? Um, why not a hat box?) And three giant suitcases full of yarn. Obviously.

Metaphorical me is clearly very strong and coordinated, carrying around all that luggage, which is funny because real life me gets tired reaching for my phone and half the time ends up dropping it.

Just kidding. My imagination skills are not that strong so metaphorical me is kind of a disaster, too. But we, and by we I mean the real life and metaphorical versions of me, are lucky enough to have some pretty rad people in our lives. Metaphorically, they carry all my luggage around for me. And push me in my wheelchair through the airport. I’m not sure how we ended up in an airport but that’s where we are apparently. Maybe we’re going backpacking! Wow, metaphorical me is so adventurous.

As for real life me? Those pretty rad people help lighten the load of the bad stuff and make the good stuff more good. Whoops…better is actually the word I’m looking for. They make the good stuff better.

Okay so I didn’t really know where this post was going when I started it but I’m cool with where it’s ended up. But also that got kind of complicated so thanks for trudging through.

Anyway. My point is…I don’t even know anymore.

My point is that 2018 was not ideal. It really did not go very well for me. But I still have hope.

My point is that I’m still so hopeful. I don’t even know for or about what really, just that after all this time I still feel hopeful. Because after all this time I still choose to be hopeful.

I know that life doesn’t magically reset at the start of a new year, but I’m hopeful that in a year from now I’ll be writing about how 2019 was the year things finally changed for the better, remembering that better doesn’t always look the way we expect it to. And if not? Well then I’m hopeful I’ll be able to say the same thing again a year from now.

So yeah. I’m hopeful. Sick and tired and frustrated. And hopeful. Because all of the stuff in all of those various pieces of luggage, and all of the people helping me carry it, when I add and subtract it all up, what I’m left with is hope.

I hope that you have hope, too. If you do, I hope that you can share it with someone who might need it. And if you don’t, I hope that maybe when you do some suitcase math you’ll be able to find some hope of your own.

I hope to see you here again soon.

And. Of course.

Happy New Year!

Happy Hopeful New Year!

IMG_0260

It’s been a long time since I showed my face here, I realized, and it’s nice seeing faces sometimes so here’s my face. Also my sister’s face.

19 thoughts on “Happy Hopeful New Year

  1. Dear Catherine,
    I just want to say that I hold some of the absolute Suckness of your situation for you! As someone who is severely debilitated with chronic Lyme and CFS going on 23 years I have absolute empathy for you. Like everyone I admire the positive spirit you show us here – but I know that in your actual life you are struggling and suffering and feeling horrible in ways that probably very few people can really understand. It’s just totally not fair (yes I know that nothing is but Still!)
    I’m so freaking angry at that doctor who reversed your small improvement!!!!
    I will let the rage go after I post this, but over the years it has been very comforting when – very occasionally – other people have shown outrage at the relentlessness of my difficult situation, like for one minute they are carrying that for me and “getting it.” So I hope it helps just a little. Please take care – I’ll be praying that 2019 brings some much deserved improvement in your comfort level. ❤️❤️❤️

    • Aw, thank you Maggie. It does feel nice sometimes when others get it enough to be outraged, but then I usually end up downplaying things because I feel bad that they feel bad haha. But I appreciate your empathy, and am also sorry that you are in a difficult situation yourself and are thus able to relate to my situation. Anyway. I wish you a happy new year as well and hope you’re hanging in!

  2. Happy New Year Catherin, I think of u so much! Great picture of u and Natasha!I think u are looking much better! Lots of love, VAL & “Barney” xo

  3. Happy happy New year, Catherine!!! I SO hope you will have amazing things happen for you this year! You are a huge gift to all who read your blogs!

  4. Here’s to a much better year for you.
    Thank you for the inspiration that you are and for the gorgeous shoes you posted to Kaitlin for me – she didn’t open them so thank you for the notes on the packaging.
    We are having the best time with them – I’m not looking forward to saying goodbye in just under 3 weeks. But as you know – all good things come to an end at some point. I reckon after 4 weeks together we will be happy to have our own space back again 😊
    Thank you for your support and encouragement on IG – I’m glad you are part of my tribe
    Linda xox

  5. Hi Catherine

    Thank you for your blog post you are such an inspiration to me, unfortunately I know that by being an inspiration you have suffered a lot because that is why you inspire me, that you have hope in the midst of your suffering. You are such an incredible writer. I always get so excited when I see your name in my email. 😊💟👱 Wishing you a better 2019.

    Cathy

    On Mon, Dec 31, 2018, 7:04 AM Finding my Miracle Catherine posted: ” Just over three months ago I wrote a post called > Waking Up about how after months of living in a nightmare things were > finally getting better. But then about two weeks later one of my doctors > ended up stopping the treatment most responsible for that imp” >

  6. Catherine. I look forward to hearing stories of your daily adventures. You have such a positive outlook on life that I take encouragement to do the same. I am scheduled to go into VGH for open heart surgery this Friday and while they say it is a routine operation, I am having thoughts about my mortality. I have lived a relatively long life, with very little to complain about, but I still hope to do good things with the time I have left: perhaps days, perhaps years.

    I wish you a good year in 2019 and hope that I will be able to send you my support for the duration. You are an inspiration to people, not just me, but so many others!

    Thank you for your posts and I hope to read many, many more.

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