motility disorder – Swimupstream

August 19, 2018

Do I Look Sick To You?

I don’t think I look sick. And my guess is you don’t either. And if you saw me on the street, you may not even notice me. I might just sort of blend in with the “normal” people.

The truth is I live in that grey area between sick and well. I’m far removed from the days when I spent more time resting than upright, and when my lyme induced brain fog was so thick that I couldn’t read. (That lasted two years, BTW).

But I’m also far removed from the happy, vital, well digesting person I was before I got sick.

In that vein, let me dissect the above photo (taken while out and about in D. C.) to illustrate the ways in which chronic illness has affected me.

Let’s start with my shorts. For starters, they are not shorts. They are a bathing suit bottom. There is actually a bikini inside, which holds them up. They are a size too big so the waistband doesn’t touch me.

Now that I have you thoroughly confused, let me explain. Somewhere along the way, my entire body became hypersensitive to pressure, particularly in my abdominal area. As a result, I cannot tolerate any type of waistband. Or even a shirt or dress that’s tight through the middle.

In the summer I wear loose fitting dresses, or the afore-mentioned bathing suit/shorts. If I want a dress that’s more fitted, I buy it a size too big, and then have it taken in so it has a little shape but doesn’t touch me.

In the winter I wear leggings. I buy them several sizes too big, then take them to the tailor to have the elastic waistband removed and replaced with a drawstring so I can make them as loose as possible.

Let’s move up to my shirt. It’s slightly loose fitting around the middle. Again, nothing can touch me.

Now, my sunglasses. Note they are lightweight. Anything with a heavier frame than what I’m wearing hurts my head. Same for hats, which is why I’m in the screaming heat with an uncovered head.

On to my purse, which is more like a medical bag than a purse, as I am on a mostly liquid diet. It contains the following:

Two insulated cups, each filled with cold water and coconut oil (the oil adds much needed calories).
Two baggies containing the protein powder that will go into each cup at the appropriate time (the shake does not hold together if mixed ahead of time).
Digestive enzymes to help my body break down the shakes.
Oh, and a lipstick and some cash and credit cards.

The things you would normally find in a purse are the least of what I carry.

Why am I sharing this? I guess the moral of the story is you never know what somebody is facing. Looking at me would you ever guess I require a liquid diet to maintain life and can’t wear pants? I don’t think so.

I try not to use this blog to preach, but I’m going to just a little bit. Everybody is carrying something. Some people’s burdens are obvious. Other people’s are more invisible. And in a world that’s becoming increasingly uncivil, I think a little kindness goes a long way.

Be nice. You just never know.

August 19, 2018

Shaking My Way Around D.C.

Doesn’t everyone plop down on a curb when it’s “lunch time”? Well, I do.

My daughter and I enjoyed a fantastic get away to DC last week. It was quite the whirlwind, and we ended up being out and about for ten to twelve hours per day. That’s not the way we usually roll. We both tend to do best with a moderate amount of activity each day, along with plenty of downtime.

But we were enjoying the city so much that we ended up staying out from morning to evening. D.C. is like New York in that way. You walk out your door with a loose agenda, but then the flow of the city takes over and you end up bumping into fun and interesting experiences. It was one of those serendipitous trips where each day took on a life and flow of its own, and we just went with it.

While that was all very fun, it also created a bit of hassle for me, as I was continuously drinking a shake on the go. You’ll recall I’m on a primarily liquid diet because lyme disease destroyed my digestive tract.

In the photo above I’m preparing my “lunch” just as we arrived at the Holocaust Museum. There wasn’t anywhere to make my shake, so I just sat on the curb. Glamorous.

A few hours later we were strolling through the city when it was time for my afternoon snack. Again, there wasn’t anywhere obvious to make my shake, so we just stopped in front of a random building and I used a window ledge as my table.

I don’t really enjoy this portion of my program. For starters, my shake tastes best when it’s very cold. When I’m going to be out for the day, I store my insulated cups in the freezer overnight and then fill them with ice cold water before we headed out. But it was 95 and humid, and by the time it was shake time, the water was not that cold. Which meant my shakes were not that good.

In general, I have a very positive attitude about the fact I’m on a mostly liquid diet. In fact, I get upset with myself when I feel down about it because I know many people have far worse problems, and would happily trade with me. So, I do my best to be accepting.

But I’m human, and it’s hard to stay positive 100% of the time. I struggle most with optimism when on vacation. Food is part of the fun, right? New cities, new restaurants, treating yourself to things you wouldn’t normally eat. Unfortunately, I don’t get to experience that when traveling. I do eat solid food for dinner, but I’m on such a restricted diet due to food sensitivities that eating out in a new city is not much different than eating at home. And that makes me sad sometimes.

When I’m feeling sad about what I’m not eating, I try to focus on gratitude and perspective. Gratitude that my problems aren’t worse. Gratitude that my liquid diet most likely saved my life. (If you’re new — I bottomed out at 81 pounds before the liquid diet. My hair was falling out. I hadn’t menstruated in years. You could count every bone in my rib cage. In short, my body was failing.)

Is giving up chewing a reasonable price to pay for leaving that place of desperation? Of course it is. But it doesn’t mean it’s easy. Especially since I have no idea what the end game is. Will my body ever be able to process enough food to maintain life? Will I ever be able to transition back to a more normal diet? I have no idea.

That’s where perspective has to come in. My liquid diet is a difficult part of my life. But my life could be much more difficult than it is. And many people suffer in dramatically worse ways than I do.

In that light, how can I feel sorry for myself? How can I dwell in the negative?

Did I have a great food experience in DC? No, not really. But did I create priceless memories with my daughter on the eve of her new life in college? Absolutely. And I absolutely would not have had the stamina for that trip absent my weight gain from a liquid diet. No way. No how.

When I’m feeling down about what I’m not eating, I try to refocus my energy toward what I’m doing and experiencing. And I’m doing and experiencing a lot. And the reason I’m able to do and experience so much is because I’m sipping instead of chewing.

Now, that’s something to chew on.

August 11, 2018

Scenes From A Vacation.

I was too busy enjoying our vacation to write about it, so I will do a little recap now that we are home. First and foremost, it was a wonderful opportunity to spend quality time with our daughter before she heads to college. I will savor those moments with her for quite a while.

On the health front, it was a pretty good week for me. My anxiety was mostly in check, my energy was pretty good, and my GI tract was mostly cooperative. That’s about all I can ask for.

Here are a few highlights:

For me, provisioning is the first step in any vacation. Since this was a longer one, I shipped the two key ingredients of my life (I am on a mostly liquid diet): Absorb Plus Protein Powder, and MCT Oil (easy to digest) which adds critical calories to my shakes. Shipping in advance saves a lot of hassle, not to mention suitcase space.

We hit the beach the first day, and I had a big reason to smile. Namely, my bikini bottom fit.

Let me explain.

I’ve had many low points during my struggle with chronic lyme disease, but one of the lowest lows came about two and a half years ago when my husband and I were on vacation in Mexico. It was February, and I had not had my bathing suit on since the previous summer. I was still in the stage where I was losing weight at a rapid clip in spite of desperate attempts to gain weight. I had long since given up weighing myself because it was causing too much stress.

Well, my bikini bottom told the tale the scale didn’t.

As I pulled it on that February day I was horrified to find it literally would not stay up. My legs didn’t even fully fill the holes. It was one of the most terrifying experiences of my life, and a very tangible sign I was losing the battle with my GI issues.

My husband and I decided right then and there that something had to change, and fast. As soon as we returned from vacation, I started with a new nutritionist, who put me on the primarily liquid diet on which I remain today. I haven’t regained all my weight, but I’ve found a lot of it, and I had no trouble keeping my bikini bottom up last week. I don’t have the words to describe how good that felt. It’s also a nice reminder for the times when I feel a little down about all the things I’m no longer eating. I can eat real food and lose weight, or I can be on a liquid diet and gain weight.

It’s not really a difficult choice is it?

My daughter is obsessed with rock climbing, so there was no chance vacation would go by without at at least one trip to the gym. She’s been encouraging me to climb for years, but until recently, I’ve never felt well enough to give it a try. I’m definitely a convert, and I love it. On this day my body was pretty tired so I didn’t climb much. But it always feels good to get on the wall, and every time I do, it’s another reminder I’m slowly but surely getting stronger.

We tend to eat in a lot on vacation, as I feel best with home cooked food (and my family does too). But we also go out a couple of times. In this instance, I was thrilled to find a grass fed beef burger, which is the only type of beef I will eat as it’s much healthier than grain fed.

I’m on the Paleo diet, as it’s it is anti-inflammatory, which helps combat lyme induced inflammation. That means no bun. But the burger place was happy to do a lettuce wrapped burger for me, which was a special treat. This will sound funny, but on the Paleo diet, I rarely get to eat anything with my hands. Think: no buns, no bread, no taco shells, no wraps, no pitas. So it’s a real novelty for me to wrap my hands around a burger and dig in. I absolutely loved it. I supplemented it with a side salad, as fries are not on my personal menu.

I feel like I look a little tense in this photo, but I’m sharing it because it’s been a long time coming. We have been visiting the same beach each summer for many years. And every year my daughter does surf camp. And every year she asks me to do it with her. And every year I had to say no because I did not feel well enough or strong enough.

This was finally the year I was able to say yes. Yea.

It was way more exhausting than I expected, but I did it and was happy to have yet one more sign that I’m heading in a good direction.

The last night. The end of a vacation is always so bittersweet. Especially this one, as it’s also the end of an era in a way, as we are about to enter the college phase of our program. I was definitely sneaking in extra hugs whenever possible.

On the way home we had a long layover in the Atlanta airport, so there was time for a sit down lunch. Of course, that didn’t mean anything different for me, as I still had a protein shake. But it was nice to be able to enjoy it with warm water (my beverage of choice) out of a tea cup. You can see my shake cup by my right wrist.

I used to have a very hard time sitting at the lunch table sipping while everybody else chewed. But I’m to the point now where nine and a half times out of ten I’m perfectly fine with it. I just accept it as my reality. At least for now. And honestly, I’d rather sip and feel good than chew and feel badly.

And that’s a wrap on vacation.

Now I need to go and deal with the piles of laundry and mail……..

August 4, 2018

A Rare Treat on the First Night of Vacation.

When you are on a primarily liquid diet and eat only one meal of actual food each day, the definition of “treat” becomes relative.

For me, a few sips of coffee and a couple of bites of very dark chocolate (lowest sugar) constitute a big treat.

My GI tract is very sensitive to anything acidic, so I’m rarely able to tolerate things like coffee and chocolate. But when I’m having a good day, I definitely take advantage of the opportunity to enjoy those things.

I can only tolerate a small amount of coffee. Maybe ten sips. So I usually just sip from my husband’s cup when I’m up for coffee.

But sometimes I order my own cup even though I will throw most of it away. I know that’s wasteful on many levels, but it’s also restorative.

Let me explain.

I was a coffee drinker before I got sick. Now, my only beverages are water and protein shakes. Literally.

I miss the simple pleasure of grabbing a coffee. Of not even having to think about whether or not it will go down ok.

It’s such a small thing, but ordering my own cup vs. sharing my husband’s helps me tap into a time that was pre-all this. A time when I had coffee. Just like everyone else.

And as I continue to rebuild my life, it is healing any time I can tap into even the tiniest part of my former, healthy self.

I can’t think of a better way to start vacation.

July 30, 2018July 30, 2018

In the Haze of Moving, A Pause to Overnight my Urine to Minnesota.

You could call that gross, or you could just call it a routine day in my life.

In the crush and mess of moving, I’m doing my best to stay on track with managing my health. Frankly, I’m not doing that great of a job. I’m working too hard, I’m not resting enough, and I’m not making enough time for the things that help me feel well — both physically and mentally.

However, I did make time to keep on track with my GI doctor in Minnesota. He’s currently treating me for yeast overgrowth in my GI tract. I really like my GI doctor, so I decided to work with him long distance when we moved. Fortunately, he has patients all over the country, so he’s used to that.

But, working with a doctor long distance means getting him the information he needs to monitor your progress, so that’s where the urine comes in. While handling my own urine is not my favorite thing to do, I just accept it as part of my reality. And honestly, it was pretty simple. I just collected it, froze it and then overnighted it.

The good news is I’m making progress on the yeast front. My initial infection rated 2.75 (whatever that means), and I’m down to a 1 now. I think the goal is to get to zero, so I’m definitely headed in the right direction. This is very good news considering I had great difficulty tolerating the recommended treatment due to my extreme sensitivity to medication. My doctor wanted me to take three different anti-microbials in fairly high doses, but I was only able to tolerate one of them at the very lowest dose. You can read more about that here.

Since I am so sensitive to medication, this is definitely a marathon not a sprint, but my doctor says I just need to keep at it slowly and steadily, and that’s what I intend to do.

I actually feel a little better in the GI department. Not go-out-and-have-a-burger-and-fries-better. It’s more that I’m eating the same things I usually do, but I feel better doing so. I count that as progress, and I’ll take what I can get.

My GI problems remain a mystery. I have very slow motility, which means my GI tract moves very, very slowly. In fact, it moves so slowly, there is no possible way I can digest enough calories in a single day to maintain my weight. That’s why I’m on a mostly liquid diet.

All my lyme doctors blame my motility disorder on the fact I have chronic lyme disease. Just another side effect. Non-lyme doctors are not so sure. The Mayo Clinic diagnosed Idiopathic Intestinal Pseudo Obstruction, which is a fancy way of saying your small intestine isn’t really working, and we have no idea why. I’ve met with several GI doctors who are sure my issues are not lyme related, but don’t have any other answers.

Long ago, I decided to let everybody be right. If the lyme doctors think treating lyme will also treat my gut, then great. Have at it. If GI doctors think treating other issues related to my GI tract will solve my problems, they can have at it too. So that’s what I’m doing. Low Dose Immunotherapy (LDI) seems to be keeping my non-GI lyme issues in check. On the GI front, I just continue to plunk away at whatever comes up. Right now, it’s the yeast overgrowth. Once that’s under control, my GI doctor wants to look at other things, and we will see what that yields.

That’s the best I can do for now.

Sometimes I take stock and think I’m doing pretty well. Then I remember I only eat one solid meal per day, and that sort of scares me. How well can I be doing if I’m on a mostly liquid diet?

But the truth is, the liquid diet probably saved my life, as I was 81 pounds and still falling when I started it. I can’t imagine how much lower I could have gone while still maintaining life. So, I’m far removed from that horror.

But I’m also far removed from normal eating and digesting. That’s a hard place to be. In fact, I got a few tears as I typed that. I’m not sad about the food I’m not having — I got over that long ago. I’m sad because I wonder about my future. Will my digestion ever be restored to something that feels more normal? Or am I looking at it?

When I get into thought patterns like that, I remind myself to take a step back. I have to remember I have 100% control over the effort I put in every day, but zero control over the ultimate outcome. That’s out of my hands, and the less I think about the outcome, the more free I feel.

Which brings me back to today. I don’t have the answers to my complex GI riddle. However, I know I have yeast overgrowth. And I know taking care of it will help me feel incrementally better. So, I will focus on that. And when I’m done with the yeast, I will focus on the next thing, whatever that may be.

And in that manner, I will just keep going. Never giving up. Always hoping for the best.

June 23, 2018June 23, 2018

My Anti-Yeast Protocol is Getting Off to a Slow Start. That’s OK. I’ll Get There.

My recent GI testing revealed I have an overabundance of yeast, and a deficiency of good bacteria. In other words, my gut is unbalanced. I wrote about it in this post a few days ago.

The yeast overgrowth is likely not the cause of my GI problems, rather a result of them. Getting rid of the yeast won’t solve my problems, but it may help me feel incrementally better. And I’m all for anything that helps in any way.

Unfortunately, yeast is a beast and it does not give way easily. It can take months to restore the proper bacterial balance in the gut, and the protocols typically involve supplements and diet modification.

My doctor prescribed a Gastrointestinal Restoration Protocol (GRP). Sexy, right?

The GRP involves five objectives, all carried out currently, as follows:

Remove Therapy. In other words, kill the yeast using anti-microbial agents (i.e. herbal antibiotics).
Reinoculation Therapy. Probiotics to add good bacteria.
Replace Therapy. Often when your gut is imbalanced, you don’t produce enough digestive enzymes, so you replace them with supplements.
Repair Therapy. Supplements to heal the mucosal lining. Again, sexy.
Rebalance Therapy. This is support for the brain, as an imbalanced gut can negatively impact brain functioning.

Any time I’m given a new protocol like this, I need to introduce the supplements very slowly — usually one or two every three days or so. I start with a small dose and slowly work up to the recommended dose. I must do it this way because I am extremely sensitive to medication, and have had too many bad reactions to count.

I wasn’t too concerned about the supplements in steps 2-5, as they are pretty innocuous, but I suspected I would have trouble with the anti-microbials in step one, based on my prior history. My GI doctor prescribed three different anti-microbials, and I introduced them one at a time. I only made it about 5 days on half the lowest recommended dose of the first one before getting sick. No surprise. I’ve been in that movie many times.

My GI doctor recommended setting that one aside for a while, and moving on to the next one, which I’ve done. I’ve taken half the lowest dose for four days without incident, so I’m going to slowly ramp up the dose each day until I am at the highest recommended dose, or I get sick. Whichever happens first. Based on how things go, I will introduce the third anti-microbial somewhere along the way,

I will be on this protocol for several months, with check-ins along the way to see if I am making progress towards killing yeast and introducing more beneficial bacteria. My GI doctor said once we get the yeast under control there is other testing he wants to do, but he’s very methodical and wants to take it one step at a time.

I’m on board with that.

This is a perfect illustration of life with chronic illness. While you live in hope of resolving the root cause or your problems, you chip away at whatever is popping up at any given time. Right now, it’s yeast.

This is most definitely a marathon, not a sprint, and I will never, ever give up on trying to regain all I have lost.

Addendum.

I am intentionally vague about mentioning specific supplements and medications I take because I am not a doctor and I don’t want anybody doing anything based on my advice alone. But I know there are many people out there battling yeast, and I also know it can be a challenge, so I am going to share the specifics of my protocol in the event it might help somebody. But please use this for informational purposes only, and if you think something might be right for you, please talk to your doctor. Most of the supplements and anti-microbials in my protocol can only be obtained from a doctor, so I feel fairly confident nobody is going to run with scissors here.

Here we go:

Remove Therapy. These are herbal antibiotics that are as powerful as pharmaceutical antibiotics, and sometimes more effective.
- Morinda Supreme (this is the one that made me sick at a very low dose), Candibactin-BR by Metagenics. So far so good on this one.
- GI-MicorbX by Designs for Health. Have not started this yet.
Reinoculation Therapy.
- Ultraflora IB by Metagenics. Mega probiotic. 120 billion per day.
Replace Therapy. Enzymes to help with digestion.
- Spectrazyme PAN 9x ES by Metagenics.
- Betaine and Pepsin by OrthoMolecular.
Repair Therapy. Nutrients and phytonutrients for the mucosal lining of the gut.
- L-Glutamine Powder by NutraBio
- Zinlori-75 by Metagenics
- Curcumin BCM-95 by Progressive Laboratories
Rebalance Therapy. This is support for the brain, as an imbalanced gut can negatively impact brain functioning.
- NAC-600 by NutriDyn

Additionally, I am on long term bone nutrients, as I have osteoporosis as a result of my severe weight loss:

Bone Builder Active by Metagenics.
OmegaGenics EPA-DHA 1000 (Fish Oil) by Metagenics.

June 8, 2018

I’m Decentralizing. And I Have Yeast.

How’s that for a headline?

As I often say, chronic lyme disease is very glamorous.

So here’s the background. When you have chronic lyme disease, you are basically dealing with problems on a parallel path. On one track is the lyme infection itself. You need to kill that mother if you are ever going to get back to health. So, that’s job number one.

On the other track, you have the cascade of problems caused by the fact you have chronic lyme disease. For example, the lyme treatment along with my compromised digestive tract caused me to lose 37 pounds (and I was only 118 to start with). Because of my weight loss, I developed osteoporosis and my thyroid began to underperform. The trauma caused by my inability to stop losing weight led to extreme anxiety. My slow motility makes me more susceptible to yeast and bacterial overgrowth in my GI tract. Additionally, I suffered from fatigue and brain fog that were caused by the lyme infection, but made worse by the treatment.

What a mess, right?

In the past, I have tried to find a single lyme literate doctor that can address all my problems. It just seemed like it would be easier that way. One stop shopping. Plus, the theory of many lyme doctors is if you kill the infection all the other problems will take care of themselves.

I employed this strategy for about five years. But recently, I realized it’s simply too much to expect one person to be expert on such a wide array of problems. Particularly because my GI problems and anxiety are so severe.

So starting a few months ago, I decided to unbundle my care to see if I can achieve better results. Here’s what I’m doing:

For lyme, I am only interested in non-antibiotic options at this point, as I do not tolerate them well due to my GI issues. The most recent therapy I’m pursuing is called Low Dose Immunotherapy, and it is being managed by Holtorf Medical Group in LA.
For my hypothyroidism, I started seeing a local endocrinologist. He suspected my hypothyroidism was a result of my low weight. Since I have gained 26 pounds in the last two years (thank you, Absorb Plus), he thought I could try discontinuing my thyroid medication. Thankfully, I was able to do so, as I now weigh enough for my body to properly regulate my thyroid. My lyme doctor didn’t think of that.
For my anxiety I have been seeing therapists for the entirety of my lyme treatment, but my lyme doctor was managing my medication, as I was seeing a psychologist who cannot prescribe medication. But in the late summer of 2017 I started seeing a psychiatrist who could prescribe medication. He adjusted my meds, and I am now on only a very small dose, with much better results. Note: I believe talk therapy does MUCH more for me than medication, but I still need a tiny bit of pharmaceutical help. For now.
For my GI problems, I recently started with a Functional Medicine GI doctor who was highly recommended by a friend who is a doctor. The first round of testing indicated a high level of yeast in my GI tract, so I am about to start a protocol to combat that. My doctor said this is just a first step, and there will likely be other testing and other issues to uncover, but he wants to take it one step at a time, so we are starting with yeast. BTW, the yeast is not the cause of my motility issues, but likely a byproduct. Getting rid of it will not provide the Big Cure, but should help matters. BTW number two: I’m actually thrilled when GI testing reveals a problem, as it gives me an opportunity to address something that might help me feel a little better.

It’s definitely more work to have a team of doctors versus a single source, but I am hoping it will be more effective.

Time will tell.

June 8, 2018

Another Recovery Meal.

I am still trying to get my stomach back on track after getting thrown off by something I ate at a restaurant almost a week ago (see previous post).

When I am in recovery mode, I basically have no appetite and need to keep my food very simple. I can almost always get eggs down no matter what. This meal featured fried eggs (pasture raised, organic) served over a bed of organic mashed cauliflower and a side of grilled organic zucchini.

There is no seasoning whatsoever except salt.

It may seem odd to be eating vegetables as a recovery meal, but when my stomach is off track, I stick to foods I am 100% sure I tolerate well, and zucchini and cauliflower are on that list. Also, pureeing the cauliflower makes it easier to digest, as I’m using the blender to break it down for me.

When I go through spells like this, I usually let my body be my guide. It sort of tells me what will and won’t work. For example, nothing acidic sounds good right now, so no tomatoes, fruit or citrus. Nothing fatty sounds good either, so no avocado. Soft, light, mushy foods are all that sound good, so that’s what I’m eating. The more I listen to my body, the faster I will recover.

My body knows what it’s doing. My job is to stay out of the way. And that’s where the trouble starts. When your digestion is as spotty as mine, it’s hard not to get caught up in the soundtrack of past digestive failings every time a new flare up happens. It’s a bad soundtrack. And quite unhelpful. But oh, so tempting.

At times like this, I need to consciously turn my mind away from unhelpful thoughts. I need to remind myself of the reality that my digestion is never in a fixed state. It’s constantly in flux — good days, bad days, mediocre days. The job for me is to be OK with whatever is happening and do my best to try not to make it worse by adding fears or negative thinking.

It sounds so simple, but it’s very hard to do.

But I keep on trying. And eventually, this flare, like all others will pass.

Until then…. pass the eggs.

June 6, 2018June 6, 2018

This Is A Recovery Meal.

When I typed the words “recovery meal” I was transported to a time many years ago when a recovery meal involved fired eggs with hash browns and ketchup after having a little too much fun the night prior. Oh, the gooey goodness.

This is a different kind of recovery.

We went out for dinner last Saturday night. Eating out is very fraught for me because my fragile digestive tract is easily knocked off balance. So when we do eat out, it’s at carefully selected restaurants with high quality foods that are willing to cater to special requests.

We went to a favorite restaurant that fits the bill to a T. I’ve successfully eaten there many times in the past, so I was feeling comfortable and confident Saturday night. I did my usual telling of my life story just to order a plate of fish and vegetables, and everything seemed fine.

Then I woke up the next day feeling miserable.

I think when I tell people I have GI problems they wonder what that means exactly. My guess is people’s first assumption is I have some sort of diarrhea issue, which I definitely do not. It’s not constipation either. Isn’t this a glamorous conversation so far?

I have a motility disorder, which means my intestines move incredibly slowly. Imagine a time when you overate. Maybe Thanksgiving after seconds. Now, imagine feeling that way every time you eat, even if it’s a small portion of healthy food. Now, imagine feeling that way all day.

Add in nausea, a general sense of heaviness in the abdominal area, and a feeling that your food just isn’t moving, and now you know what it feels like to have a motility disorder. (BTW, there is not consensus if my motility disorder is a byproduct of my lyme infection, or if I just happen to have two separate things at the same time).

Adhering to a primarily liquid diet with just one solid meal per day at dinner generally keeps my symptoms in check. It’s like my intestines can get the job done once per day, but no more.

But things only run smoothly if I eat foods I tolerate well. And in spite of my careful ordering Saturday night, something went wrong in the kitchen and something made its way into my food that doesn’t work for me. Which caused my GI motility to slow considerably.

So I woke up Sunday morning with the symptoms as described above. It was very unpleasant. I spent most of the day either on the couch or in bed with my heating pad on my stomach, which is the only thing that seems to help. Along with time.

When I am having a flare up like this, I have no appetite or interest in food whatsoever. Fortunately, my protein shakes are incredibly easily to digest, so I can still get them down even if I don’t feel like eating. Then dinner time rolls around. The obvious thing might be to have another shake, but three shakes per day is one too many. Trust me, I’ve tried.

So I try to eat food even though nothing in the world sounds good. Eggs are my go to when I just don’t feel well, so for the meal in the photo, I had an “omelette”. However, there was nothing inside except a very small amount of raw goat cheese. Nothing else sounded good. I ate my “omelette” with a side of steamed broccoli and cauliflower rice. No seasonings. Nothing. Just plain, plain, plain.

I got it all down OK, but it wasn’t that enjoyable.

It’s now Wednesday, and my GI tract is still not back to normal. Once it gets knocked off balance, it takes days to get back on track.

It is very anxiety provoking to have a flare up like this because the longer it goes on, the darker my thoughts get. Am I going back to square one? Why is it taking so long to feel better? Is something new wrong? Will I start losing weight again? Nothing sounds good. How will I eat dinner?

Of course, this begins a vicious cycle. The anxiety does nothing to help my GI problems, which I’m well aware of, so then I get anxious because I’m anxious, which makes everything worse.

That’s where I’m living right now. Trying to ride out this flare. Trying not to make it worse by adding anxiety to the equation.

I’ve been in this movie many times, and my digestion always rights itself. But it happens on its own time, not mine.

And that’s my message to myself this moment. Hang in there, sweetie. This will pass. It always does. Just hang on.