wellness
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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
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
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
13322
Woke up this morning knowing I was going to feel awful. Just didn’t realize how awful. I haven’t felt this sick in a minute but the weather and the poison ivy and a whole bunch of things combined to bring me to my knees.
I got up. Showered. Went through the rhythms of morning routine – Athletic Greens and vitamins and omegas and green smoothies and neti pots and I threw in a nice facial steam to loosen up the junk in my sinuses. I’m feeling … okay. But I know that it will take a couple days to fully recover from this and I have an appointment with Dr. M tomorrow … so my timeline is somewhat truncated.
Having MS is a funny, constant struggle to figure things out without there ever being a definitive answer. And even though I know that there are no answers, that there will never be answers, that sometimes one thing will work and then it will not … even though I know all these things, I still search. Because if I’m not searching, then in some ways, that means I’ve given up. And I won’t waste this precious life I’ve been given feeling defeated.
Going to rest today. Try to take care of myself. Remind myself to give grace. To take a moment. To heal.
Happy Sunday.
Xox, g
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