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09822
Today is my first foray into the pain medication my new neurologist prescribed for migraines. My last headache was a little less two weeks ago and I knew that yesterday was it’s next scheduled arrival.
I tried to play it cool. Paid close attention to what I ate. Drank a ton of water. Managed to *not* eat peanut butter out of the jar. (Sounds weird, but that’s a true triumph for me). I could feel the signs in my body – the tightness in my left shoulder, radiating up my neck and around my skull. The sensitivity of my skin, the discomfort in my jaw. I felt the acid rise in my stomach, churning and rolling. But the headache pain never came.
I took my preventative pill before bed. I prayed for sleep.
I took my Invisalign out around 3am. I clench my jaw something fierce because of those mouth pieces, and that clenching just feeds into the headache. That still wasn’t there but I could feel it lurking beneath the surface, waiting, waiting ….
When my alarm went off for yoga this morning I knew in every fiber of my body that I didn’t want to go. I was afraid – afraid of the pain I knew was coming. Afraid of the headache that would take residence and not leave for days. I rolled over and waited. I waited but it didn’t come.
I went to class.
There were moments – like waves lapping the shore – when the pain peaked through. As I flowed and sweat and wobbled my way through balancing postures and vinyasas. It was there. I felt a small relief. Because I’d known. All the signs were pointing that way.
So when hubs and I got home, I popped my first pain pill. I’m absolutely terrified. I am afraid of the side effects and I’m afraid it won’t work. I’m afraid the pain will come and it will rage longer and harder than normal, just to let me know that it’s in control, not me. I can feel the tension building in my shoulder, twisting in on itself. I try to breath and relax but relief doesn’t come.
I hope the pill helps.
Xox, g
03822
My mind is a jumble today.
I woke up in the darkness of the early morning and fear gripped me. I was paralyzed with worry that another headache was coming. It was funny to have that reaction – not the haha funny obviously but the strange funny – because I hadn’t really realized how afraid I am of the pain until that moment. Or maybe I had full clarity of my own feelings for the first time. I’ve lived with headaches for so long and I think that now that I’m on medicine to help mitigate, I am afraid it won’t work. Sort of like the MS treatments I did for the first two years of my diagnosis that had zero effect.
Being chronically ill is exhausting. I’ve probably written that sentence a million times on this blog. Last night I went back and read some of my earlier posts and I found it both troubling and interesting how the same thoughts and feelings come up again and again. As though I’m trapped in an unending circular maze.
Anyway, I thought maybe I should refocus on something more positive. The things that bring me joy.
I have a friend who is five years into writing her happy thoughts on Facebook and I believe that time spent focusing on finding those little moments is rarely wasted. The energy we send out is the energy we attract.
I love my chai tea. There is comfort and joy and safety and goodness wrapped inextricably in that twenty ounce cup with the green logo that I buy nearly every day (and sometimes twice). I used to say I would quit it one day but now I acknowledge that the pull of that little daily routine is too great and too joyful for me to ever consider eliminating it.
I love when my delivery of catheters arrives. I don’t know that I’ve ever talked about my catheters on this blog or even on social media. It’s a private thing, dealing with the myriad of bodily function issues that come with MS. But I’m ripping that band-aid off because if someone judges me for catheter use then I didn’t really need them in my life in the first place. I get shipments every three months that I have to authorize online two weeks prior and sometimes I skate a very dangerous line of nearly running out before new ones arrive. At my last urologist appointment my doctor increased my prescription so not only did I receive a huge shipment of catheters (which brings with it the knowledge that I can pee comfortably for the foreseeable future) but I got six extra boxes, which is just joy personified for me.
I love when I sleep five hours without interruption. It makes a huge difference in my health and my happiness and it happens rarely, so it is something to be celebrated indeed. A good night of rest for me is two to three hours and then (after a pee break) another five or six solid hours. I’m a whole new person and I am so grateful.
The sleep thing has become a big deal because one of the triggers of my migraines *could* be lack of restorative sleep on a regular basis. As I’m not even a week into my new preventative meds, I don’t know and my new neurologist has just joined the case, but it’s one of the top things he thought could be a trigger. (And I always thought I was a good sleeper … haha, jokes on me!).
Anyway. Tomorrow will mark one week on headache medicine. I haven’t had a headache but that doesn’t mean much at this point. I don’t feel any different so I am deeply worried. Probably what woke me in a panic in the middle of the night.
Living in fear is pretty tiring. Kinda like MS. Meh.
That’s why it’s important – every once in awhile – to stop and smell the roses. (Or the chai tea 😁).
Xox, g
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
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
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
16322
Usually, when I’m sick, I’m not so sick that I can’t do things. It’s more like – slow down, don’t work out, get some rest and drink some water. This sickness … this has slayed me. I’ve been lying on the couch, nodding in and out of consciousness, reminding myself that I have things I’ve committed to (yoga teacher training for one, but this blog, French lessons, meditation … the list actually goes on). I’m basically able to do the bare minimum and even that exhausts me. No food sounds good, water doesn’t taste good (strange for me) and even sleep doesn’t feel like it helps much.
There’s certainly a marked difference between baseline sick (aka, having an autoimmune disease) and acute sick (where I feel like I am now). I keep reminding myself that it will get better … but I keep waking up and it isn’t better, so that’s highly discouraging.
Also, I used an ab wheel on Monday for the first time, and after thinking I broke my back (and realizing I’m not as strong as I like to think I am) my entire core has been burning since this sickness began. And that, plus the GD poison ivy and this sickness — it has been a very rough week.
Xox, g
D5 Creation