Author: Susan Westbrook

Vertigo is Cruel.

This photo is from last week when I enjoyed a vertigo-free evening with my handsome husband. We danced the night away at a family wedding. He twirled me. He spun me. At one point I did wonder if that was advisable given my vertigo issues, but I was having a rare moment of feeling great, and decided to take in the joy come what may.

And nothing came. I woke up feeing well and thought I had finally put vertigo behind me.

Then yesterday happened.

I had been feeling fine all day. Then without warning I had an intense vertigo flare up while getting out of my car at the grocery store. I thought it would pass as other flare ups have, so I continued inside. Once there, the vertigo intensified. I had instant nausea and I had to lean heavily on the cart just to remain upright. What to do?

I abandoned my list and headed to the check out with whatever was in my cart. I’m still not sure how I even managed to do that. I literally staggered to my car, took anti-nausea medication, racked the seat back and closed my eyes. Right in the middle of the grocery store parking lot. If people were staring, I didn’t care.

As long as I stayed perfectly still I was OK. Any movement at all set the world spinning hard and made me feel like I would vomit. In this setting I had to start problem solving. My husband was out of town on business, my daughter needed to be picked up in 30 minutes, and somehow, I had to get home, which was 25 minutes away. Should I call somebody? Should I get an Uber? Will the medication kick in in time?

I finally decided to go for extreme rest and hope for the best.

After about 25 minutes, I slowly raised the seat upright. I was a little woozy but nothing like before taking the medication. I managed to pick up my daughter, drop her off somewhere else and get home. All without moving my head much, without getting in an accident, and without vomiting. Mission accomplished.

The physical discomfort is the least of this episode. The unpredictability is the problem. I genuinely thought I had moved on from vertigo, and then got fully blindsided at a most inopportune time. It was both scary and sobering.

I am better today. When I got home last night I did something called the Epley Maneuver which helps vertigo. It basically involves laying on the bed with your head off the end and moving it in a particular way.

When I woke this morning, I was literally afraid to get out of bed. By then the medication had worn off and I had no idea what I would be facing. I laid there and read for 30 minutes just to put off the knowing.

When I did get up I felt OK. I wasn’t dizzy, but I felt physically drained and emotionally fragile.  I’ve been gaining strength in both departments as the day progresses. 

This is a new wrinkle. Is the vertigo gone, or just on break?

I don’t know. I can easily see how this could cause me to limit my activities. I’m going to be cautious in obvious ways like limiting my time on our boat. I’m not going to jump on a trampoline or ride a merry-go-round. But I don’t think I’m going to change anything in my day-to-day life.

I’m not going to be afraid of the prospect of vertigo. Or at least that’s my goal. I’m going to live my life. And if I get dizzy I’ll deal with it.

Feeling Nothing.

Normally, feeling nothing is considered a bad thing. Not being able to feel your legs is bad. Not being able to access your feelings is bad. Not feeling valued is bad.

In my case, feeling nothing feels so good I want to shout it from the roof tops.

Let me explain.

Whenever I eat, it’s almost always unpleasant afterwards. I can experience any or all of the following: nausea, stomach ache, feeling like I’ve swallowed a bowling ball, being so full, heavy and uncomfortable I can hardly move. And this is after eating a normal portion of healthy foods accompanied by a pre-meal meditation for the food to go down, slow eating, thorough chewing and a handful of digestive enzymes. In other words, I do everything I can to help the food go down. And I still get feedback.

Then something wondrous happened a few weeks ago. I ate a typical meal and felt…… nothing. No pain, no heaviness, no nausea. No anything.

I was euphoric. I had a rush of joy I can hardly explain. It was a little bit of a high. I ate food and did not feel sick. The memory of it nearly brings tears to my eyes.

That night while reading in bed I made my husband crazy because I could not stop talking about how good I felt. I really did go on, and on, and on. He was a saint to listen to me endlessly. He shared my joy, and was so thrilled for me.

I didn’t want to turn out the light because I wanted to stay up and savor the feeling. I never wanted it to end. I knew I felt good in that moment, and I had no idea if I would ever feel that way again, so I just could not go to sleep.

But of course, I did eventually go to sleep.

Since that day, I have had several more instances of feeling nothing after eating. And I celebrate each and every one. I treasure these moments. I savor them. I give deep gratitude for them.

These moments teach me my body has the capability to properly digest. Maybe not every time. But sometimes. This is the knowledge that keeps me in the game. This is the knowledge that tells me I’m getting somewhere. This is the knowledge that tells me the hard work is worth it.

This is the knowledge that will keep me from giving up.

Because some days I want to. Some days I just want to scream and yell and throw all the pills, potions and powders down the toilet. Some days I want to take this monkey off my back and kick it and beat it and hurt it and ask it to never, every hurt me again. Some days are just too much to bear. Some days I wonder how I can go another minute putting up with what I put up with.

Hard as those days are, I now have the knowledge of feeling nothing. I know it’s possible. I know if I keep on trying I will have more days of nothing.

I just need to hold on. Keep my head down. Keep doing what I’m doing. Keep having faith in my care team. And in myself. Giving up seems like a really good idea sometimes. But I won’t. Not today. Not ever.

A healthier me will emerge. I don’t know when. I don’t know how. I just know it will happen. 

Until then, I am going to celebrate each and every feeling of nothing.

I Don’t Do This Often.

I am way too thin. I weigh less than my lean, healthy 15-year-old daughter. Never good.

I’ve tried everything to gain weight, but it’s not happening. I  have three things working against me:

1. I’m naturally lean. It was hard to gain weight even when I was healthy.
2. My shredded digestive tract isn’t properly breaking down and absorbing the food I eat.
3. My intestines move slowly (called a motility disorder), which means I cannot eat as much food as I’d like because I get unnaturally full from small volumes.

People have interesting reactions to a person trying to gain weight. Many see it as  “cry me a river problem”. I’ve had many people say it’s a problem they’d like to have, and numerous people have offered me their excess weight (which I’d gladly accept if there were a way).

I’m here to tell you trying to gain weight is every bit is difficult, frustrating and anxiety provoking as trying to lose it. 

For this reason, I don’t weigh myself often. Once or twice a month at most. I stopped weighing for a number of reasons. First, I realized it wasn’t helping anything. I do the best I can every single day, and either that will lead to weight gain or it won’t. 

Second, I realized weight is the wrong endgame. Health is the ultimate endgame. When I regain my health, I will regain the weight.

If I only focus on my weight I won’t feel like I’m making any progress. But when I take stock on how far I’ve come in terms of the variety and volume of foods I can digest, I can see I’m moving forward. 

There was a time when there were only 9 foods in all of the world I could easily digest. Last night I went out to dinner with my daughter and had the following:

• A house salad to start.
• An entree of salmon, carrots and zucchini. I ate the full restaurant sized portion.
• I finished the meal off with two home made cookies and a latte. 

I don’t weigh any more than I did when I could only eat 9 foods. But last night I ate a meal of normal variety in a normal portion. And I had a latte, which is significant. It literally took years to be able to tolerate coffee again. I only feel up to coffee once or twice a month, but it’s better than not at all.

The best part is I felt fine after the meal and the coffee.

I may still be skinny, but that’s progress. 

I know many people worry about my weight, and I don’t blame them. I’m pretty bony. Seeing me in a bathing suit can be unnerving.

But my physical appearance hides the healing and progress that’s going on internally. My digestive tract is slowly healing. I am making progress. It’s agonizingly slow. But it’s progress. I couldn’t eat. Now I can. I couldn’t drink water. Now I can.

But if my progress is going to be measured solely by how much I weigh, it’s not going to look like I’m getting anywhere. And focusing on it only negates the blood, sweat and tears I’ve put in every day since I got sick. 

My Mayo Clinic doctors would not have predicted I would ever eat a meal like I did last night. But I did it. And I will do it again. And again. And again. I am defying the odds they gave me six years ago and will continue to do so until I am better than anybody ever imagined I could be.

No matter how  much I weigh.

Progress. One Sip at a Time.

We flew to Portland for a wedding last weekend. I drained this liter of water before were even half way there, and I drank another one later.

This fact may be mildly interesting to you. To me, it’s a miracle.

Go back six years when I first got sick. I literally could not swallow a sip of water without feeling pain all through my torso area. It was as if I was trying to push water down against the force of gravity. 

It was the same with food. It was like somebody had put my digestive tract in the “off” position without my permission or knowledge.

Since food seemed more critical than water, I basically gave up on drinking. In the course of a day I would force down a cup at the most, and that was mainly to swallow pills.

As I’ve been healing, my tolerance for water has slowly increased to the point I now drink at least 8 cups of water per day, and often even more. 

Sometimes it’s easy to lose track of progress. I’m not cured. Not even close. But I’m drinking water in copious amounts, and I wasn’t before.

When I first got sick, I imagined myself as the hare. I was going to power through this illness, and be back on track in no time. Six years on, it’s looking like I’m the tortoise.

That’s OK. We all know how that turned out.

Heels, Hiking Shoes and an Immersion Blender.

Taking my show on the road is never easy. In addition to the blender, I am carrying the following:

Home made Paleo bagels
Packets of coconut butter
“Smoothie Packs” with the dry ingredients for my morning antioxidant, immune building, gut healing smoothie
Sponge for washing the immersion blender
Powders for my evening antioxidant smoothie
Dish soap
Dish towels
Two Mason jars for smoothies
Netti pot
Salt for Netti pot
1 week of supplements, sorted by day (over 100 pills)
Hemp oil
Teaspoons for measuring hemp oil and Netti pot salt
Packets of almond butter
Paleo approved seed crackers
A pill splitter (need to cut some in half due to my inability to tolerate regular doses)
Cup for making smoothies
A small cooler for carrying my evening smoothie when we go out for dinner
Ice packs
Digestive enzymes – two kinds
Home made Paleo baked goods for dessert – the most calorie dense foods I eat all day. Very important.
Thyroid medication

Oh, and I packed some shoes and clothes.

Is carrying all this a pain? You bet.

Would it be easier to just give it a rest for a week? Absolutely.

So, why go through this every time I travel?

Lyme disease never takes a break from making me sick. So I will never take a break from trying to kill it.

It’s like that.

Enter Vertigo.

Vertigo is the latest player to join the drama that is my health. She was uninvited, unexpected, and made a very sudden and dramatic entrance.

Two Sundays ago I woke up feeling shaky and off balance. I thought I was having a bad reaction to allergy medicine (I’m very sensitive), and that I just needed to eat something.

As I was eating breakfast, the vertigo came on in a rush. It was a sensation I’ve never had before. It was difficult to remain upright. I had the feeling I was in motion when I wasn’t, and I felt that if I moved my head even the slightest bit to either side I would hit the floor. Hard.

It was a Sunday morning, so we headed to the ER, where we got the vertigo diagnosis. The photo above is after the ER visit, and I remained in that position more or less for the remainder of the day. When I was laying there I felt like I was on a boat. Rocking, rocking, rocking. It was really strange.

Turns out vertigo doesn’t go away overnight. I was more or less out of commission for the first week, and have been semi-functional the second one.

This whole thing came on just 12 hours after arriving home from vacation. As you can imagine my re-entry did not go as planned. Instead of doing my usual routine of laundry, bills, fridge re-stocking etc., I was doing not much of anything.

While I wasn’t tackling my to-do list, I had plenty of time to think about what I was learning from this little detour to the land of dizzy.

1. Many things I deal with can be “powered through” when necessary: stomach aches, feeling painfully full, fatigue and generally not feeling well. 
2. Vertigo cannot be “powered through”. It’s a selfish master. When it strikes, surrender is the only option. Often it’s not enough to just sit down. You have to close your eyes and be still. Any motion magnifies the problem a hundred times.
3. Vertigo helped me put my usual struggles in perspective. They are unpleasant, but more manageable than Vertigo. Suddenly, I realized my lot could be much, much worse, and I was grateful for the hand I was dealt (pre-vertigo).
4. I realized how useless it is to worry about most of the things I worry about. While on vacation I was concerned about several things on my calendar in the first few days I’d be home. I can’t always count on having good energy, and I was afraid my calendar and to do list would be unmanageable. Turns out not one of those things became a problem for me. Either they got cancelled or somebody did them for me. I never worried about Vertigo, and that ended up being a much bigger problem than any of the little things I was worried about. Geez. What a waste of energy.
5. I pray for people with intractable Vertigo. It’s really that bad.
6. The worst thing about Vertigo is not how badly it makes you feel. The worst thing is the utter unpredictability of it. It comes and goes. As soon as you think you have it licked, here it comes again. When it’s bad you can’t drive. It’s hard to make plans when you are not sure if you will be able to drive. Or be upright.
7. I learned the importance of surrender. When vertigo was at it’s worst, all I could do was sit in my chair with my eyes closed. I had to let go of all plans for that hour, afternoon or day.  I also had to let go of any anger about this sudden change in circumstance. Being angry about it wasn’t going to help me feel any better. In fact, it would have added to my suffering. I found a sort of freedom in simply being with my situation as it was, versus putting energy into trying to change something that was un-changeable.

Knock wood, I seem to be through the worst of it. I would say I am 90% better. I have periods with no dizziness, and others where I feel “motionish” as I’ve started calling it. I have slight sensations of being in motion when I’m not, but it’s not debilitating. I am still making time for rest each day, but I’m also able to participate in life.

Speaking of which, we leave for a family wedding on the west coast in two days.

Onward.

Blame it on the Sauerkraut.

I am feeling much better. As is often the case, it’s not until I feel better that I realize just how crummy I had been feeling. That’s definitely true today.

The evil demon that was residing in my brain and making it difficult to think straight has left, my stomach is no longer painfully bloated, and I’m not getting nauseated after every meal.

How did this all change in 36 hours? Turns out it was the sauerkraut. And probably the kombucha. Sauerkraut can cause anxiety and nausea? I bet you don’t believe that. I wouldn’t if I hadn’t lived it.

Here’s the back story. About a month ago my doctor recommended sauerkraut and kombucha. Both are fermented, and carry loads of good bacteria that do battle with the bad bacteria currently ruling my gut.

My doctor had me go slowly, as she was concerned I would not tolerate these new foods. Apparently my body is high in histamines, and people who are high histamine do not tolerate fermented foods well. With this in mind, I started with a tablespoon of sauerkraut per day. Over time I slowly worked my way to ¼ cup plus 4 tablespoons of sauerkraut juice (really good stuff in there) twice per day. I was tolerating it well, and was feeling good about myself and happy I was doing something to help my body.

After a few weeks without incident on the sauerkraut, I introduced the kombucha. I started with a single shot glass per day, and worked my way up to a full bottle. This registered as a big accomplishment, and I was proud and grateful. (Remember, there was a time when a single sip of water was excruciating, so adding an entire bottle of liquid daily is a big deal).

Then it all came crashing down.

Now that I can think clearly, I can see the histamine-induced anxiety started about two weeks ago. I am used to anxiety, and have many non-pharmaceutical tools for keeping it in check, primarily meditation and the daily practice of mindfulness. But this last round of anxiety was immune to any of my battle tested tools. It’s as if my anxiety was like a bad reaction to medication, and the only way to make it go away was to stop the medication. In this case the “medication” was sauerkraut and kombucha.

I started to suspect that two days ago, so I cut them both out. Within 36 hours, my anxiety turned to vapor, my bloating went away, and I stopped feeling nauseated after eating. This is both good and bad news. Good because I am feeling better, bad because I have to discontinue yet two more things that were helping me. This has happened so many times I swear I could open a health food store/pharmacy with the discarded pills, powders and foods that I have not been able to tolerate.

This is the point at which I could become discouraged. But I’m not going to do that. First, I’m just so happy to be feeling better. Second, I’ve been here many, many times, and there’s always something else to try. I don’t know what that is yet, but my doctor is wicked smart, and I know she will figure it out.

In the meantime, I’m going enjoy feeling better. Whew.

I Don’t Feel Well.

There’s never really a good time to not feel well, but feeling ill on vacation is a particular bummer.

We travel quite a bit, and I typically have good luck in terms of how I feel. Somehow I just rally.

No such luck on this trip. I am having lots of nausea, and my stomach is out of whack to the point I am extremely bloated. The bloat is clearly visible and definitely uncomfortable. It’s like there is pressure inside my tummy pushing out. My belly skin feels strained. Stretched.

Because the gut and the brain are closely linked (most of your serotonin is produced there), my brain is out of whack as well in the form of increased anxiety.

On top of that my allergies are flaring and my ears are clogged to the point of causing equilibrium issues. I actually broke down and took pharmaceuticals for that (not my usual choice). The ear pressure improved, but I am jumpy from the medication due to my poor ability to tolerate it.

Let’s just sum it up by saying I was hoping for something different than what I’m experiencing.

I’ve been in this movie before, and I know I have two choices. 1) I can get twisted up in regret, resentment and disappointment, or 2) I can accept the situation for what it is, and make the most of what I have to work with.

Option 1 is tempting, and I make brief visits there, but option 2 always brings me more peace. It takes a lot of energy to resist something I can’t do anything about, and I have found that letting go of a situation can provide a certain degree of emotional freedom. It also frees up energy to be used in more productive ways.

Like watching my daughter take a surfing lesson, which I’m doing in this photo. I’d like to be out there with her, but that’s not possible today. But I’m here, I’m participating in my own way, and I am storing memories.

And that’s the framework for how I’m handling this trip. It’s not exactly what I wanted, but it’s what I have. I am still laughing, I am still having fun. I am still loving my family, and they are returning it. When I feel well, I am savoring it. Deeply. When I don’t feel well I am participating as best I can, while keeping my mind as open and accepting as humanly possible.

I am Smiling on the Outside, but am Crying on the Inside (only just a little).

Don’t feel sorry for me. I’m not complaining. Just explaining.

One of our favorite vacation traditions is to spill into the golf cart after dinner and head to the local treat shop for a little something. The kids love it, the adults love it, and we wouldn’t miss it. It’s as much about the ritual (we ALWAYS do it) and the golf cart (kids negotiating whose turn it is to drive, the wind in our hair, going slow) as it is about the treats.

In my world “treat” is a relative word, and typically does not involve anything bought at a sweet shop. That’s because my diet is helping kill the Lyme and other bad bacteria that have turned my digestive tract to roadkill. Among other things, those buggers love sugar, so sugar is out of my diet. And that means so are store bought treats.

Should the whole family miss out because I can’t partake? Absolutely not. And just because I’m not partaking in the food (note my empty hand), it doesn’t mean I’m not partaking in the experience. And last night was a great one. It was one of those serendipitous moments where all our moods and love and intentions collided in the best way possible.

We were close and we laughed and we never wanted it to end. It was spectacular in its simplicity.

Would my experience have been made better by a bite of chocolate? I’ll never know, but I wouldn’t trade last night’s experience for any bite of any thing.