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02822
It’s Day something-or-other of migraine meds and so far, not so bad. I haven’t experienced any specific side effects that I’m worried about. I don’t love taking medicine (especially the kind that has warnings about stopping usage) but I am also so desperate to slow down the onslaught of pain that some of my morals and values get blurry. I don’t love that, but that’s where I’m at.
I take medicine (aka get an infusion) for my MS. I guess it’s only logical and inevitable that I will be on meds to help curb my migraines as well. Despite working hard to keep my body as healthy as possible.
On a different note, had a lunch meeting today about an exciting prospect. I don’t want to talk too much about it until a little more time has been invested, but I feel good about something for the first time in what feels like forever. And that’s sort of miraculous.
Anyway. I made it through another day. I even managed to eat fairly well (despite two chais). It’s always a work in progress. But it feels okay today.
Xox, g
29722
Yesterday was a long day and I thought about blogging (I think about a lot of things 🤪) but by the end of the night – after our day took several sharp left turns – I crawled into bed, hoping for sleep and not much else.
Last night was my first night of migraine medication. I have spent years trying to avoid medicine but my life has been eaten away by the pain and the inability to function clearly so when an option was offered to perhaps prevent the pain, I took it and didn’t hesitate.
I don’t like pharmaceutical drugs (not even recreationally- actually, especially not recreationally) but there comes a moment when there doesn’t seem to be any other option. I’ve discussed my headaches with my MS neurologist, my functional medical practitioners, my chiropractor … basically everyone. And while everyone (minus my neuro) is all for holistic healing, no one has offered me any solutions that actually work.
It’s hard to explain the debilitating nature of pain unless you’ve experienced it, and the average Joe has not experienced sustained, untreatable pain for any length of time that would allow grace and understanding. Or the painful choice to take drugs despite every fiber of my being hating the idea.
Side effects are drowsiness (no prob, I have MS and am tired constantly!) and blurred vision (ummmm…not as great considering I just had laser eye surgery last year ….). I think blood pressure as well, but that could be the pain meds he prescribed for the inevitable headache that will come.
Anyway. I have mixed feelings about western medicine and patient care (I mean, there is no real patient care – there is drug prescribing and rushing through symptoms and not acknowledging that it’s a person sitting there in the form of me … but I digress). I told my physical therapist about it this morning and she offered an alternative treatment so I’m going to try it (but I’m not ready to give up the drugs yet … the pain is truly unbearable). I guess I feel optimistic that my headaches are being addressed. I’m hoping I can begin to feel better consistently and have a normal, functioning life. (Y’know, for someone with MS).
That’s the update. Today is Day #2 of drugs. John is at the farm all weekend. There is no Lucy so … it’s just me. And yoga.
Xox, g
27722
I always start the year off strong and then sometime in March completely fall off the wagon. It’s sort of like my meditation practice. When I’m in a groove, it’s excellent. But it’s so easy to fall out of the groove. And then realize I haven’t blogged in nearly four months.
Tomorrow I have an appointment with a headache specialist. I have been tracking my headaches for about a year and a half and they occur much too frequently and are far too debilitating to continue to ignore them. Once upon a time — a nearly forgotten time — I did not get headaches every other week that took me out for three days. But here I am now, hoping that tomorrow is the beginning of a solution.
I think I’ve figured some things out but then something happens and I’m lost again, searching in vain for commonalities or some kind of fixable situation that can be addressed. Hormones, infusions … nothing is the same each time. It’s maddening.
Anyway. I thought I’d come back here to blog. To hold me accountable, sure, but also to document this journey from the semi-beginning.
For the record, as usual, I feel like shit. Not just physically (that’s kind of a given especially since I am coming off another headache) but mentally and emotionally. I’m angry, frustrated and feeling impotent in the large machine of western medicine. My right leg hurts through its numbness – something nearly unbearable. My hip sears in pain like the sizzling of meat on a grill. My left shoulder aches and throbs, sending me messages I cannot interpret. My right ankle drops, tries to lift, and drops again. The numbness burns. I want to cry. I am resentful of everything MS has taken, resentful of how much more I will have to set down along the way.
Tomorrow begins another quest for wellness. Another walk down the de-humanizing hallway of neuroscience. I know that I have to make changes – diet changes and exercise changes. Life changes. I’m angry about that. But anger doesn’t change the facts.
Either I change or I continue to decline. There are no other choices.
Xoxo, g
30322
Getting really sick felt a little like sliding slowly beneath the surface of the water. Not flailing or panicked, just sinking slowly, unable to move or help myself at all.
My head slipped below the surface and it felt like forever before I began making my way toward the light again.
I don’t feel one hundred percent, but I don’t know if that’s even an option any more – age, multiple sclerosis … life. Too many factors making it tough going. The pain in my hip screams, protests, and I keep pushing forward, blindly ignoring my body’s cues.
I wonder if this is how it always is – good intentions, starting off strong and then somewhere along the line losing my way completely. Exhaustion, pain, disappointment. It piles up until trying to keep going feels fruitless. What even is the point?
But – life is the point, right? We aren’t guaranteed anything after this. No one has come back to let us know what to anticipate. Either it’s really great, really bad or there isn’t anything at all. So this life – MS and hip pain and discouragement and failure – that’s the gig. Take it, leave it, but you only get one.
I’m trying to rev up my engine after weeks of drowning. Find my rhythm again, find my motivation. Remember all the promises I made in January, when the whole year lay ahead, unlived and full of potential.
We have trips planned and accommodations booked & paid for and we keep trying valiantly to make the most adult decisions we can. We paid off the new truck (I named him Monty but John’s less on board than he was for Bucky). We paid off our debt. We have two homes. We have savings. I need to talk to our financial advisor, I need to make vet appointments for Lucy. Most immediately I need to cook dinner tonight. It never stops – the responsibilities, the slipping by of minutes and hours and days. Routines and adventures, surprises and sharp, unexpected left turns.
I’m still determined to finish YTT before leaving for the U.K. in May. I’m determined to get my health back on track. I’m determined …. I suppose that’s the first good sign.
xox, g
23322
I broke my streak yesterday.
I realized it at 11.45p when I woke up (for the second time) my headache throbbing with no sign of abatement.
I feel as though I’ve been sick for the entirety of 2022. It’s probably not the case, but every few days I’m down and out and I can‘t seem to get my feet underneath me.
I don’t want to lose writing momentum. I have worked hard to get into the habit, to get into the mindset. To assure myself that I won’t lose track of my dreams and goals every time I hit a road bump. (This is hard to comprehend because when I hit a road bump – aka get sick – I am certain in the thick of it that I will never recover or feel human again).
I’m plugging away at teacher training. I’m plugging away at French. At some point I’ll turn the corner on this blog and know exactly what I’m writing about and why.
That day is not today. But I blogged. And that feels like a win. I’ll take it.
Xox, g
21322
I’ve been wondering lately what it is that I have to say exactly. What is my contribution to the conversation?
Every time I *think* I know, life happens and it either irrevocably changes the conversation or renders my thoughts obsolete. So I’m here, blogging every day (whoo hoo – it’s Day #80 of the new year and I’m still going!). But I’m not sure what my point is or what I’m trying to say.
That I’m alive? That I am doing this? Last year I wanted to get to Day #66 because the idea of doing something for 66 days to create a habit has worked pretty well for me. But I stopped blogging around the time I finished reading “Why Buddhism is True” and went back to yoga. Once I was back in my routine of yoga, blogging got forgotten. I got sidetracked by something else … Blogging became an afterthought.
The past two years have been strange and difficult and … uncomfortable. If Covid had never happened, where would I be? Would I be the same person – would my path have been the one I have walked these past few years? I wonder all those things, and I wonder often if I have anything at all to contribute to any larger conversation, or if I just like talking and the attention of centering things around my story.
This year I have successfully gone to yoga and managed to blog and I even started my French lessons up again (something I was doing really regularly in 2019 and then … couldn’t manage to keep up when when we got home from Japan). I began yoga teacher training again (what?!?). I make dinner some nights. Life has begun to get back to the hectic pace of “Before.” I have eschewed rest for MORE STUFF.
Mostly it’s rooted in the idea that life is precious and I don’t want to waste a minute. I want to pursue my passions and travel and kayak and learn how to paddle board and eat good food (and also lose weight because I was born last century and I am perpetually hung up on the scale and envy young women now who seep self-confidence out their pores). I want to read books and talk about ideas and listen to live music and get eight hours of sleep and drink water and laugh and hold my husband’s hand. And *also* have something relevant and thoughtful and provoking to say.
I want all the things.
Xox, g
20322
Even when I want to not blog, I am disappointed in myself for ending a streak. So here I am, posting a quote I saw a few days ago and kinda liked.
I went to yoga today. Dad brought over danishes. We watched DMZ on HBO. All in all, not a bad Sunday.
Xox, g
19322
It’s one of those late spring days smack dab in the middle of March. The forecast said rain but it never came, instead sun streamed through a cloud dotted sky, warm and breezy.
I’m sort of lost in thought about life. And about breathing. About cycling through the seasons, each welcome upon arrival and stale at the end. Even winter and snow. I am tired now, of big coats and boots and salt tracked into cars and houses.
Spring is that eternally optimistic time – that life comes back after so much death and cold and dark. It trickles in, small at first and then blooming all around in brilliant colors.
Currently, life is still muddy brown and gray. Sad and tired and beaten up by Mother Nature. But there is the hope of growth and life. And that, on a day like today, is enough.
Xox, g
18322
Yesterday was a rough day.
I thought I was going to feel better when I woke up, but I ended up feeling just as fuzzy-brained as the previous days; just as exhausted and unfocused. Being sick sucks. I mean, it really, really sucks. There are a million and one metaphors but what I keep thinking about is heading to the surface of deep water – the light and the promise of oxygen. Right now I feel as though I’m just floating in the mid-water, longing to head to the top but somehow unable.
It makes me think about all my chronically ill friends. (Can I call them friends if we only know each other on social media? I suppose … I mean, that’s the world we live in, yes? Everything is online, so little is in person). Anyway, I feel guilty feeling frustrated with this illness when I know people who are struggling so much more than I am, with no light at the top, no hope of oxygen. So doesn’t it make my complaining a little absurd (and frankly selfish?).
It’s hard to keep things in perspective when we live in a global community. When we know things happening in Ukraine in real time. When with the click of a button, we can be anywhere. Illness is hard because it inherently makes living more difficult. And the degrees to which it can do this vary. But a person struggling at the first rung of the ladder should feel okay feeling bad, even if there are people on the 100th rung who are facing much harder obstacles. Because it’s all hard. And it isn’t a race or a competition.
Sort of like life accomplishments. Y’know?
Anyway. This illness has just wiped me out. I’m tired and I can’t sleep. I’m fidgety and frustrated. I’m hoping every morning I will wake up feeling on the other side.
Maybe tomorrow.
Xox, g
17322
I have a million things in my head but my mind is fuzzy and I’m tired. And all I want is to feel better and be able to do yoga or just get sweaty but I can barely function and I’m so frustrated and so effing tired.
Starting again.
I’m super type A. I’m a competitor. One time, in middle school, I went on a bible study trip with a friend of mine. (I was not in bible study – our family did not go to church. But I was drawn to it, fascinated by it. Constantly curious). The trip consisted of biking and then rafting. I’d tell you where or the distance … or any of those things. But I can’t remember them. I remember biking, but mostly I remember the rafting. For a couple reasons. First, I was crazily competitive and our raft was often far ahead of the other rafts. (To me, this was excellent. To those who wanted camaraderie and friendship and shared memories and who understood that life is not always a race … not so much). Second, we ended up getting pinned between the raft and a large boulder and it took every ounce of strength not to get sucked under the water. It came about because we were so far in the lead we headed to the shore before the landing point and then had to navigate back out onto the river. Anyway. I learned lessons that day. And it has forever stayed burned in my memory. Because one of the camp counselors (bible study group leaders?) lectured me about competitiveness and reading the situation. That winning was not always the thing … sometimes, winning was actually the opposite of the thing. That we missed out on a lot of fun because we were so focused on ‘winning.’ And we (ironically) went on to learn that lesson very painfully when fighting powerful currents and trying to stay above water.
Anyway, I tell this story because it comes up a lot in my steam of conscious thought. Because I am super competitive. And sometimes I lose sight of the fact that life isn’t actually a race or a checklist. That life is a journey and every moment should be savored.
Perhaps not specifically this moment of being sick on the couch, still fighting a fever with poison ivy blisters dotting my forehead in a snake-like line from my eyebrows to my hair line. But that’s not exactly the point.
There are things to be learned in this moment. And there is so much to be appreciated in all the other moments. Friendships and discussions and learning and growing. We are all gifted this one precious life — what will each of us do with it?
I worry that I am not doing enough, I am not reaching my potential. But what is potential exactly? A societal ladder that we are all encouraged to climb as high as we can? Could potential equate to more than momentary gain and professional accomplishments?
I don’t know. I’m just one human. Perhaps I don’t have the power to change the script for everyone. Perhaps I only have the power to recognize that I need to change the script for me. That my potential doesn’t have to fit into a neat box of societally accepted achievements. But it’s hard to remember that. It’s hard to get up and look around at the world and remember that this one life, MY one life, should only be lived for me. Not anyone else. Not any other approval.
So if I don’t win awards or publish books or sit on Oprah’s couch discussing philosophy … it’s still okay. I’ve still understood the assignment.
Xox, g
D5 Creation