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19222
Earlier this week, I took off my Apple Watch.
To be more precise, I never put it on in the morning. And I’m not sure what all people do, but I don’t sleep with my Apple Watch on. So when i decided to start my day without it, that was a big deal.
My headache pain was so extraordinary, and life was feeling so very unbelievably hard, I decided that I couldn’t take the constant awareness that the watch usually provides. I needed rest, and sleep and more rest, without being reminded to stand up or that I could close my rings. I needed peace and I needed quiet.
At first I didn’t notice because I was so tired and I was trying desperately to beat the headache. But as the week went on the absence of my watch on my wrist was both freeing and uncomfortable – as though I was missing a piece of myself.
The watch changes everything – gives tangible metrics to movement and standing and exercise. It counts steps. It gives you data to define your days.
In so many ways, the watch works for me and in so many ways, I understand the harm it does. I should want to walk just for the pleasure of walking, to enjoy the outdoors and be disconnected for a moment. Not because I *need* steps. And when I am tired, I should rest, not push to hit exercise and calorie goals. But that’s what it’s become. Closing rings and hitting step count goals.
Which, by the way, aren’t actually that bad. They’re – dare I say it?!- motivating and helpful? Just maybe not when they start to become addictive?
So that’s the rub. It’s both good and bad. In both situations – with and without the watch – I am free but I am also missing.
Tonight, instead of fretting about how to close my rings and get my steps I took my watch off and went downstairs to rest and relax. I hope that’s my relationship moving forward — a little healthier, a little more balanced. A little less fraught.
Xox, g
18222
I read an article the other day and this quote appeared. It’s been stuck in my head ever since – about how the ‘rules’ are set up, who makes them and why we follow them.
Why weren’t we taught to fear the humans burning other humans alive?
Xox, g
17222
Life is not fair. It isn’t even kind very often. We work hard for those things with our humanity. But it is a human thing, I believe. The idea of fair and kind.
We all have choices to make every single day. How we live, how we exist in this life we’ve been given. How we deal with the hand we’ve been dealt. Dealing with people who make incomprehensible decisions is a challenging place to be. It is even more soul-crushing when it is breaking the heart of the person who matters most to you.
I’m in a run of bad days. Bad MS days, bad family days … just bad days. I know that the bad will not continue forever. Life ebbs and flows. We are ebbing right now, pretty hard, and it feels awful. But eventually the tides will change.
Eventually the tides will change. I believe that.
Xox, g
15222
It’s very hard to think about much else than the pain, fatigue and brain fog when I have a headache. And because I get them so frequently, I have learned some coping mechanisms and ways to get through the days … but I have yet to figure out how to make their duration shorter (its usually a solid 48 hours or more) or how to lessen the pain.
I don’t want to talk about pain and headaches and exhaustion and MS every two or four weeks. It’s boring and repetitive and really, how much more is there to say? (Hint: Not much). But when I’m in it, I’m in it. And the past few days I’ve been really, really in it. One of my worst headaches in awhile. Unendurable pain (which of course, is endured because what is the alternative?), inability to sleep and a very effed up digestion due to pain meds and most foods making me want to vomit. (Don’t worry, I never lose weight, much to my chagrin). Lucy even went to stay with her Zia and Noni because I was unable to take care of her, and John has been gone taking care of his Dad every day since Saturday.
I want to sleep tonight, so very desperately that it’s hard to articulate. I want to sleep and wake up tomorrow on the other side of the pain. Able to think about other things, able to eat food other than toast.
Last summer I made an appointment with a neurologist about my headaches but then never went — determined to solve the problem on my own without strong drugs. I think I’ve passed that now — I think I would take just about anything if it stopped the pain. Which is a desperate place to be.
I promise to try not to talk about headaches next time I get one and I apologize that the past few days have been brief and a little loopy.
Xox, g
14222
One of my favorite pictures of J+me. Early days of our relationship.
My forever Valentine.
Such a funny day anyway. Can’t I just love him and show that love any old day of the year? For no reason at all?
Xox, g
13222
Lucy runs our lives.
These photos aren’t from today. Today it snowed and everything was covered in a blanket and we walked across the fields, leaving a trail of footprints.
And then we watched the Rams win the SuperBowl. And we were happy because it meant a ring for Matthew Stafford and Odell Beckham Jr and a whole host of other men who play this game at the highest level.
Galentine’s Day. And I spoke to no one but my husband. My New Years Resolution to be a better friend hit a pot hole.
Am tired. Want to fall asleep to the sounds of Frodo and the shire.
Xox, g
12222
Life takes us on weird twists and turns.
I was thinking about that today as husband drove down to the hospital to be with his parents and I stayed home, exhausted beyond reasonable exhaustion.
I’ve had a couple days in the past when exhaustion has prevented me from essentially functioning as a human. I’ve gotten better at recognizing it — I used to ‘push through’ but pushing through just comes back to bite me (usually in the form of a days long migraine). Today I realized that everything I thought I was going to do wasn’t actually going to get done. In fact, nothing was going to get done. Not working out, not dinner with my Aunt & Dad, not showering (which takes an absurd amount of energy that I just did not have).
I used to feel painfully sorry for myself on days like today. Angry at my disease, angry at my inability to do the things I believe I can easily do. Recently I’ve stopped beating myself up. I work hard to be as healthy as I can be. Sometimes I have to take a beat. Life is tough enough as it is, I don’t need to add to my woes by twisting myself in knots.
On the plus side, I watched “Marry Me.” It wasn’t great (it kind of reminded me of “Notting Hill” but without as many quotable lines). But I am a diehard Jennifer Lopez fan, and I have been for years. She is my North Star for skincare and style and health. And she looks phenomenal (as per usual). Plus, who doesn’t love Owen Wilson’s quirky?
It might snow tonight, which is a plus and a minus. Because I’m so tired, and John is gone, there’s a little stress about walking and if it gets icy or slick. And I probably won’t get a chai in the morning. But snow is snow and it soothes my soul.
My soul needs some soothing right about now.
Xox, g
11222
I’ve been thinking a lot lately about personal responsibility.
The idea that not only do we get to choose how we show up in the world, but we also get to choose how we want to live. Unless everything is predetermined. But that’s a whole different conversation.
I spend most of my days existing in the world in a way that does a couple things – allows me to be as comfortable as possible (health-wise, in our home, etc) and allows me to fall asleep at night feeling at peace with who I am, what I did/said/acted upon/put out into the world. I’ve spent so much time in the past few years reading philosophy and religion (and everything in between and around) and there is obviously no ‘right’ or ‘wrong’ way to be.
Every time I start to get frustrated (for various reasons, but currently due to the opposing positions that my in-laws and I take on pretty much everything) I remind myself that all the things I’m wondering — how do they sleep, how do they feel okay with the way they behaved, etc etc – is because they frame their lives, their interactions and their opinions within a completely different framework than I do. Like most of us (myself included) they are the heroes of their story. So even though they are not heroes to me —and from their point of view, I’m the villain- their belief would be that they are behaving in the correct way and everyone else is incorrect/rude/wrong. So we are stuck at odds, believing totally different things but also NOT believing totally different things (morals, etc) just framing them and interpreting them completely differently.
I don’t know that they spend any time considering my position in the same way I consider theirs but …. perhaps they do. I just don’t know.
I find my heart full of angst and my brain full of frustrated questions about how they can possibly put themselves into the world in the ways in which they do, only to circle around to the fact that they do no believe they are doing anything harmful, but rather that harm is being done to them.
I could not imagine myself not taking responsibility for myself, for my own personal well-being, for my safety and for my understanding. I just … I don’t understand. It makes me work hard to not only comprehend, but have compassion.
Xox, g
09222
I feel as though the last 24 hours have been a huge mush of rushing and adrenaline and endless waiting and adrenaline and sitting.
This blog post is me phoning it in because I meant to write at the hospital (where I had infinite time and also … no time) but it never happened. And now I’m home and exhausted and unable to make my brain work in any sane, linear manner.
Life is hard. Adulting is hard. It’s all hard.
But we do it anyway.
Xox, g
08222
I was thinking today about how I used to believe that I only wrote well when I was sad. Not just a little sad; desperately, deep depression sad. As though the sadness somehow tapped into whatever potential existed within me.
Spending some time this year re-reading old blog posts, I’ve realized that my writing is good when it’s good … and sometimes my life is good at the same time. Depression and sadness aren’t my muse.
It’s funny when something we believe so strongly is suddenly disproved. John and I spent last night having one of our more intense conversations — difficult, sad, devastating. There were moments when I know I made him think about things in ways he’d never contemplated before. And it was uncomfortable for him.
I find that when I am caught in those moments – the really uncomfortable, I’d rather be anywhere else thinking about anything else moments – my initial reaction is denial. I try to find any way to maintain the status quo, to disprove the information that caused the discomfort in the first place.
Sometimes that lasts for hours. Or days. Or weeks. Sometimes it only lasts for moments. The more I practice it, the easier it becomes to let go of all my pre-conceived notions, all the things I’d believed for as long as I’d believed. But it doesn’t make it more fun. It doesn’t change the devastation that comes when our perfect glass houses come crashing down.
You can’t put the toothpaste back in the tube. No matter how hard you try. Some things just cannot be unknown.
Xoxo, g
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