Archives
now browsing by author
24222
The world is on fire.
Russia invaded Ukraine. Texas is legalizing a witch hunt against trans children and their parents and care-givers.
The world is on fire.
g
23222
Something that makes me sad — limited release Kombucha flavors from Wegmans that I can never find again.
Okay, that’s my random thought for this blog post. But this pomegranate orange is delicious and I’m so sad I won’t be able to find it again. Insert sad face emoji. 🥲
Yoga today was dreamy. Super hot and humid and sweaty but practically perfect in every other way. No fallen triangles or flipped dogs (poses that plague my wrists) and a class full of familiar faces. Wednesday’s classes are taught by my favorite teacher – I absolutely love her so deeply there aren’t adequate words. All the teachers at the studio are excellent and the community is what keeps me afloat when I feel like I am drowning, but Sara is my yoga North Star. She empowers and encourages and keeps everything so grounded and real.
I’ve always loved yoga – since the early days of Ryah in Conshohocken, but recently I’ve settled into the fact that yoga and Be & Breathe have given my life the shape that allows me to be the best version of me (always stumbling and falling but trying anyway … coming back again and again with an open heart and a mind that is so desperate to learn and question and push boundaries). Yoga has become the foundation and the framework.
Everything else is the icing … yoga is the cake.
Xox, g
22222
Today was an interesting day. Gray and warm for February but also full of strange and left-field emotions.
Once I got on the bike (a struggle but accomplished!) I felt much better. And even when I’m sitting and feeling woeful I know exercise will help. It’s getting up and getting it done that I find so difficult sometimes.
Life was all over the map last week — painful both physically and emotionally and without much stability. This week feels better – a little more rhythm and routine. Less pain, less uncertainty. But the weather wreaks havoc with my body and I always find that disconcerting.
My mind is full right now – not an excellent sign considering I meditated (but I also read my email, which I know not to do before bed but did it anyway … whomp whomp). I trying to remind myself that my frustrations are more a reflection of me than anyone else (per my meditation, which felt timely while reading my emails and quietly steaming) but frustrated I remain regardless.
Must sleep now. An early morning and a doctor’s appointment awaits.
Xox, g
21222
One of the things that I’ve been trying (and mostly failing) to learn is the difference between what is good for me and what I *think* is good for me.
Case in point – it pains me to take my Apple Watch off if I haven’t hit my goals – not just my red green and blue rings but also my step count. Tonight I am going to sleep short about 1500 steps. Because what’s good for me (rest) trumps what my watch says (walk longer). I know this because I am always learning the nuances of my disease and today – with its huge temperature changes – slayed me and my poor, lead weight legs. I don’t need to push my body any further, I need to rest it. But those steps will haunt me and I will try to make up for them the rest of the week.
Knowing and doing are two very different things. Knowing tells me I shouldn’t eat gluten or dairy but … when a Reuben sandwich presents itself, I have a hard time saying no. Knowing says respect your body but doing says “Use it or lose it,”. And with MS, that’s a true and highly likely possibility.
I’m going to go to sleep now and try to be gentle with myself this week as the temperatures bob back and forth between spring and mid-winter. I am going to try.
Xox, g
20222
Some days I don’t feel well and I know what the issue is. I ate something wrong, I didn’t sleep well, etc etc. Today I couldn’t quite put my finger on it. But it was an MS-y kind of day. Aches and pains and stiffness and fatigue. One of those days where I’m working hard just to be human.
When I was first diagnosed I swore I wasn’t going to change anything about my life. I wasn’t going to let this disease change me, change the things I loved, change the shape of things. But life changes the shape of things, we learn and we grow and we make better decisions. Some of us get pushed in that direction, but I think most of us eventually get there.
I’ve known for a long time I was going to have to make big diet changes (ones that I sincerely don’t want to make – hence dragging my feet). Today reaffirmed it with a vengeance. As I sat in the darkness of the movie theatre and reconciled with myself that I knew exactly what was making my digestive system revolt; I could either continue to suffer or make the changes I need to make. I felt both sad and resigned. And painfully, painfully tired.
Adulting is hard work. Whether it’s making responsible financial decisions, or changing my diet, I find it a struggle every day. Where do I compromise, where do I stand firm? What’s worth it and what isn’t … and what are the consequences.
It’s a little after seven at night and I’m calling it a day. I’m flat out exhausted, my body is spent, and there is no reserve of energy to pull from. Today is done.
Xox, g
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
16222
Life has been anything but easy lately. Not just my father-in-law’s health, but my own and how to manage my disease while being supportive of my husband as he navigates the unknown waters of post-surgery delirium.
This moment is the other shoe dropping.
Things happening in clusters – first a run of really good things and now a run of really challenging things. Moments that remind me again and again how far I have to go on my journey of self-development and self-discovery.
How do you know the line that differentiates self-care from selfishness? How do you give without giving up everything … your self-worth, your mental health, your personal peace? I wonder these things as I sit in my headache purgatory. As I order groceries online to be delivered. As my legs buckle beneath me, giving up or giving in …. On the verge of giving out.
How do I walk this tight rope of personal preservation as my husband transitions to permanent care-taker? Is it even possible?
This is the other shoe dropping. Loudly. With a definitive thud.
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
D5 Creation