I look like I’m just taking a cat nap, right? Actually, I’m in a drug-induced haze. In fact, at this moment, I felt so drugged my lips were tingling.
Let me back up. Per my previous post, I am currently enduring my second round of the vertigo rodeo. Typically, vertigo is treated with a medication called Meclizine. I, however, am incredibly sensitive to medication, particularly those that can cause drowsiness, as Meclizine can, so I held off on taking it.
But I’m on day 12 of being more or less house bound, and I really needed to get out to take care of a few things yesterday. So, somewhat against my better judgement, I decided to take half a Meclizine pill that my doctor had prescribed to me in what he called a “grandma dose”. No offense to the grandmas out there.
At any rate, half a grandma dose proved fully too much for me. I got so tired, I was in a middle-of-the-night sleep in the middle of the day. My husband took this photo when I woke up, and I was completely dazed and confused. And this was a full TWELVE HOURS after I took half the grandma dose. And this was my second nap of the day. I managed to stay awake until I crashed for good at 8:30 PM, fifteen hours after first taking the medication.
So, obviously, drugs are not the answer for me, and I’m just going to have to gut this vertigo out. Tomorrow, I’m going in for a procedure called the Epley Maneuver, where a physical therapist moves your head in a precise pattern that’s supposed to re-align your inner ear crystals that apparently go akimbo when you have vertigo. It helped me the last time, so fingers crossed it will work again. (If you’re wondering, I didn’t go for the Epley sooner because tomorrow is the first appointment I could get. We live in a small town and apparently the physical therapy place is a hot ticket).
Even if the Epley Maneuver helps, it won’t be instantly. My experience is that vertigo recedes slowly. It’s not like flipping a switch.
In the meantime, I’m doing my best to remain mindful and in the moment. I continue to remind myself this is far from the worst thing that could be happening to me. I remind myself there are many people dealing with much bigger problems, and I have compassion for them.
I’m doing my best to let go of my plans for how I was going to be kicking off my year, as I definitely had bigger things in mind than sitting around.
But here’s the simple fact of the matter. Whether I like it or not this is what’s happening now. And the more I can embrace it and let go of what I think could or should be happening now, the better off I’ll be.
Easy to say. Much harder to do. But I’m giving it my best shot.
I started out 2018 with a horrible case of influenza. I was so sick I was hardly even aware it was New Year’s Eve. Needless to say, I did not celebrate in any way.
This year we were on a family cruse on New Year’s Eve, and we had the most wonderful evening. Just before midnight, the captain stopped the ship across from a Mexican island that is known for its New Year’s Eve fireworks display. We crowded the deck rail, the music was thumping from the pool party behind us, the countdown began, and at the stroke of midnight, the fireworks started, the ship’s deep horn blared for a good thirty seconds, and we popped champagne. It was a fantastic moment.
As I stood on the ship’s deck, I took a minute to be grateful for how much better this year was than last. What a difference a year makes.
Then this happened.
I should back up for a moment.
I am very prone to motion sickness, and have vomited over the side of many boats (my husband is a big boater, so water is an inevitable part of my life). I am also extremely sensitive to medication, so I cannot tolerate any of of the sea sickness medications. I have tried all the natural stuff — the wrist bands, ginger tea, acupuncture, acupressure, essential oils etc. I even tried this thing called a Relief Band, and it actually made me seasick when I tested it on land!
Given the above, a cruise might seem an odd choice, but we’ve been on two before and I did not get seasick either time, as those ships are large and relatively stable. But for whatever reason, the third time was not the charm. Quite the opposite, actually.
I had intermittent seasickness throughout the cruise. But the situation was exacerbated when we made a stop in Cozumel. We wanted to escape the tourist trap of the port, so we took a ferry across to Playa Del Carmen. I have taken this ferry ride twice without incident. But once again, the third time was not the charm.
By the time we got to Playa I was so nauseated I had to lay down on a bench for a while. I recovered enough to walk about around and hit our favorite spots in Playa, but the ferry ride back to the port was in the back of my mind the whole time. I told myself the seas would be more calm by the time we went back.
Wrong. They were worse.
The boat was seriously rocking, water was rushing in and people were screaming. I did my best to just focus on the horizon and but pressure on the acupuncture point for nausea, but to no avail. I was a wreck by the time we got back to the ship, and thank goodness there were still several hours in port before we sailed again, and the stillness gave me time to recover and enjoy the rest of the evening.
The story gets better before it gets worse again. On the better front, I only had mild motion sickness issues for the rest of the trip, and we really and truly had a fantastic time. One of the best vacations ever, even with the motion sickness.
On the worse front, things went dramatically downhill once we got off the ship. That’s right. When we got off. I’ve had that experience before. When my husband and I are on our boat for an extended period, I get “land sick” when we get off. It’s usually no big deal. I just feel like I’m rocking for a few days, and then it’s over.
This was entirely different. I became increasingly nauseated with every passing moment of being off the ship. By the time we got to our gate at the airport, I basically couldn’t move. I just slumped in a chair with my eyes closed until it was time to board. The flights home were basically a nightmare. I either slept or just stared straight ahead. No looking out the window. No reading. Way too nauseated for that.
I figured it was just a more severe case of my usual “land sickness” and expected it to pass in a few days. I was wrong about that. I spent the first few days home more or less unable to move, read, or look at my phone or computer. Anything that engaged my eyes made me feel even more nauseated.
This is pretty much how I passed the time.
Each day, I kept thinking this is the day I’ll feel better. When the nausea didn’t pass in a week, I finally went to the doctor and he confirmed what I was afraid of — Vertigo.
I had Vertigo once before. You can read about it here.
Vertigo is unpleasant. I am nauseated from the time I get out of bed in the morning until the time I return in the evening. The severity of the nausea comes and goes. Sometimes I can semi-function. Sometimes I have to sit with my eyes closed. Today is a half way decent day, as I’m able to look at my computer, and type. I can’t always do that.
This is definitely not how I planned to start my new year. Pre-vertigo, I was focused on a year of health and healing, and this was not on the agenda. But it’s a wonderful reminder that much of what happens in life is not on our agenda. Sometimes the off-agenda things are unexpected happy events, and sometimes they are struggles.
But I can almost always find the upside in a struggle, and I’ll find it in this one too. For starters, I’m reminded how blessed I am to have the kind of life where I’m able to drop off the radar for a week or a month or however long this takes (there is no telling with Vertigo). Also, this little tangle with Vertigo helps me keep the rest of my struggles in perspective. I’ve learned to “power through” just about anything — stomach aches, fatigue, brain fog, even anxiety. But Vertigo cannot be powered through, as any type of motion makes it worse. So, I have renewed gratitude that most of my health issues are power through-able when necessary. And I’m grateful for the reminder that things could always be worse.
I used to be a runner before I was sick. When I was setting out for a long run, I’d get into a certain mindset. I’d tell myself to just settle in and not think about when it will be over because it’s not going to be over for a long time.
It’s that way with Vertigo. I’m not thinking about when it will be over. There is literally no telling. Instead, I’m settling in as if preparing for a long run. I’m letting go of to do lists and expectations for how I had planned to kick off my new year. Instead, I’m going to listen to my body and fall back on a strategy that has been immeasurably helpful to me over the years. Each morning, I’m going to ask myself a simple question. What’s possible for me today? Some days the answer will be a lot. Some days the answer will be a little. Some days the answer will be not much.
And I’m going to try to be ok with the answer. Whatever it is.
When I first became sick in 2009 , I weighed around 115 pounds. Some days a little more, others a little less. If you are wondering, I am 5’6″.
With every passing day of my illness, I weighed less and less. I was doing everything in my power to gain weight, yet all I did was lose it. This slow yet steady march of weight off my body caused immeasurable emotional distress. At a certain point, I began to fear my intestines were simply no longer capable of absorbing nutrition.
My hair started falling out. I was fatigued all the time. My menstrual cycle stopped for years. I stopped weighing myself. I just couldn’t look any more.
If you need a reminder, I have a motility disorder that either is or isn’t related to lyme disease, depending on who you talk to. When you have a motility disorder, food moves through your GI tract at a painstakingly slow pace, which means you feel uncomfortably full nearly all the time. And you get full from eating very little. Also, you have a lot of stomach pain, nausea and general discomfort. Sounds like a blast, doesn’t it?
It is against this backdrop that I was trying to gain weight. You don’t need to be a rocket scientist to see why I was not successful.
My husband recently told me that back in those days he would put his hand on my hip during the night and just cry. I was nothing but bones, and they seemed to be protruding more with every passing day.
We were scared. Very scared. We considered a feeding tube and Picc line, but both felt like such drastic measures.
Out of desperation, we tried one last consult with a new nutritionist about two and a half years ago. She suggested a liquid diet comprised of elemental protein shakes. Elemental protein powder is broken down as far as food can be broken down, so the GI tract does not have to do much to digest it. Rather, the shake is simply absorbed. Hence, the name Absorb Plus.
I wasn’t too excited about the prospect of a liquid diet, but I wasn’t too excited about being a bag of bones either, so I didn’t see I had much choice. My nutritionist asked me to weigh myself so we could get a a baseline before starting the shakes. I told her I couldn’t do that, so she asked me to do it with my eyes closed and have my husband report back to her.
To this day, I don’t know how my husband kept a straight face as we dealt with the scale.
I weighed 81 pounds. Remember, I am 5’6″.
I started the shakes, and hoped for the best, completely unaware of how little I weighed. I knew I was scary skinny, but I never would have guessed just how scary.
I crossed my fingers as I tried the shake, as I had already tried several other protein powders that I was not able to tolerate. At first, my GI symptoms remained the same, but after about two weeks, my symptoms slowly started to decrease, and I did not feel painfully full all the time. I had less stomach pain and nausea and I generally felt better.
Each week, my husband weighed me while I didn’t look, and he reported the results to my nutritionist. I was gaining weight for the first time in years, although, I still didn’t know how much because I didn’t feel safe looking at the scale. One look in the mirror after the shower told me everything I needed to know.
At that time, I told myself if I could just get back to 110 I would feel pretty good about life. Yes, it’s less than before I got sick, but it seemed like a pretty solid number, given where I’d been.
Well, I hit 110 a couple of weeks ago! Just typing that brings tears. It’s taken me two and a half years. I could never describe how hard it’s been. The foods I’ve given up. The times I’ve watched others eat while I sipped. The hassle of brining my shakes everywhere. The daily commitment to stick to the program no matter what.
But I can honestly say it was worth it. Because along with the weight, I gained confidence, and a stronger sense of the person I used to be. I don’t feel so physically fragile. I don’t feel like I need to spend every waking moment strategizing how to gain weight. I don’t feel like I need to freak out if I don’t get all my calories in on a given day. I’ve been able to resume working out and I even put on muscle.
This all amounts to a burden lifted. A burden I’ve been carrying for 9 years. Man, was it heavy. You have no idea.
As happy as I am to weigh 110, I’m not giving up, because I’m not at the end of the story yet. I gained weight by being on a liquid diet. And I see the liquid diet as a band aid, not a cure. If I went back to real food tomorrow, I have no doubt my 24/7 GI issues would return, and my new weight would go back to where it came from. Nothing has really healed. I just found a way to work around my problems.
So, I’m carrying on. I’m continually looking for new doctors, new options, new anything that will help me. I have a few things in the hopper, but nothing nailed down yet. I will report on that when I get it figured out.
In the meantime, I’m going to enjoy 110, which is my new favorite number.