The "chronic" in "chronic illness" makes it seem like a chronic illness is one that stays the same, but what it really means is that you don't get better--your health may in fact be fluctuating. Or, as is too often the case, getting worse.
In 2018, my health got worse.
Technically, the downturn started in the fall of 2017. That's when my gut started misbehaving more than usual and when the nerve in my nose started acting up.
That's right, I'm looking at YOU, infratrochlear nerve in my right nostril!
Several nights each week, around 3:00 a.m., my infratrochlear nerve would suddenly get hypersensitive for three or four hours. The result being that it was very painful to breathe through my nose--the slightest movement of air created a clear, cold pain that ranged from ice-on-the-skin painful to ice-on-a-sensitive-tooth painful. The simple solution, you might think, would be to breathe through your mouth. However, one of my nighttime medications gives me dry mouth. I also have steady post-nasal drip. Breathing over a dry, phlegm-caked tongue created conditions so foul that nerve pain was preferable. My tongue also seems to get puffy in the night, so to even get air in I had to have my mouth open to a much wider-than-natural degree and it didn't work for me to try to sleep like that. Of course, it wasn't working for me to sleep with a pillow over my face, either. (I did try blocking off the sensitive nostril using an earplug, but every time I inhaled, it would tug on the plug. Also, the sensitive nostril was always the nostril that was open. Most people don't notice it unless they have a cold, but our nostrils are not equally open at the same time--they alternate with one side being more open than the other. Thanks to the allergies also contributing to the steady flow of nighttime phlegm, the interior of my nose is usually slightly swollen at night. Once upon a time, until I had surgery that basically hollowed out the interior of my nose, I had almost no airflow at all through my nostrils and chronic sinus infections to go with it. Conditions have improved a great deal for me, but there's just enough inflammation in my nose at night that the nostril that is less open is actually mostly closed, resulting in inadequate airflow. On top of all this, all of my head and neck, from the collarbone up, was riled up in such a way that when my nasal nerve was acting up, it hurt for air to touch me in a cold and awful way. The solution, you might think, would be to just burrow under the covers. Well, because my body can be cruel, when the nasal nerve was acting up, my body from the collarbone down would be ferociously hot. I needed my abdomen and hands (we'll get to the hands later) uncovered. It took me a long time to come up with a solution.
That solution? The balaclava! That's right, I started wearing a ski mask at night. I found a nice high-tech, super-thin fleece number intended for winter sports and wore it in bed. It wasn't perfect, but a million times better than a pillow over the face. I even fell asleep in the ski mask a few times. So there'd I be, at 3:00 a.m., with my covers shoved down to my waist, my pajama top hiked up to expose my belly, my hands arranged with my palms out, and a ski mask covering my face and neck.
I've had lifelong insomnia and am accustomed to being awake for several hours every night, but even once I got the ski mask thing figured out, being awake for several hours several nights per week because you've got some serious nerve issues going on in your face has a way of impacting your waking life. My daytime cognitive fatigue got worse and worse. I struggled terribly with concentration and had a really hard time taking information in--just the littlest bit and I'd get overwhelmed, or it would just slide of my brain. I couldn't think and I most certainly couldn't write. It got to the point where wanting to write but not being able to became more painful than not wanting to write at all, and so I gave up the very last thing I'd been holding on to since my migraines turned chronic and taught myself not to want to write. I had to accept that I might never write again and to be okay with it. As a measure of how miserable I was, I actually did it. I gave up writing, I gave up a piece of my soul, a crucial chunk of my identity since I was six years old.
My diminished cognitive capacity and my fatigue and increased level of migraines meant that I started spending a lot more time in bed during the day. We're not talking about "oh, I'm so tired!" fatigue, we're talking "I can't be upright one second longer" fatigue. I had no choice. Sitting in my bed saved me just enough energy over sitting in a chair that I could aimlessly look at (though not necessarily engage with) the internet, or watch an easy-to-process show, or read, instead of doing nothing. I find it better to do SOMETHING over absolutely nothing, even if that something, like reading, is hard on my eyes, because if I do nothing, then I have no choice but to sit and observe my misery and that really isn't helpful. So I sat in my bed, leaning against the pillows, reading advice columns (the level of entertainment I could handle), and accordingly wrecked my neck and upper back. My neck got horribly stiff and my occipital region got all inflamed and I had nasty tension headaches all the time, which in turn caused migraines, which in turn made it so I had to spend more time in bed. I KNEW it was a vicious circle, but I really could not be up. I did not have the energy required to spend sitting upright in a chair.
So I had the nasal nerve issue, and the neck issue, and I also had some kind of issue with my gut. It wasn't just that I was terribly bloated and gassy, it was that I clearly had some kind malabsorption going on. It seemed that no matter what I ate, I was always on the verge of hypoglycemia. (And far too often, over the edge.) My gastroparesis already makes it hard to keep my blood sugar up and steady since I never know if/when the food I ate is going to be digested, but this was worse than usual. I spent way too much time feeling shaky and spacey and wiped out. Eventually we figured out that I was experiencing SIBO--Small Intestinal Bacterial Overgrowth. This is likely due to the gastroparesis, since they have found that motility disorders increase your risk of developing SIBO. What happens is that you get too much bacteria in your small intestine. In simple terms, the bacteria compete with you for carbohydrates and turn them into gas while also impairing the ability of the small intestine to absorb nutrients. It doesn't help that, due to my gastroparesis, my diet consists largely of easy-to-digest simple carbohydrates, the preferred good of the bad bacteria. I took some nasty antibiotics that wiped out the bacteria in the small intestine, followed by some potent probiotics, and I felt so much better! I could go eight hours between meals! Everything I consumed got absorbed! My hugely distended belly flattened! It helped so much...and then it came back. I spent far too long in denial before I again took the antibiotics and got dramatically better and resolved to act swiftly in the future when the symptoms cropped up. I've had three episodes of SIBO now and am hoping that there won't be more, but I know better than to bet on that kind of thing.
That solution? The balaclava! That's right, I started wearing a ski mask at night. I found a nice high-tech, super-thin fleece number intended for winter sports and wore it in bed. It wasn't perfect, but a million times better than a pillow over the face. I even fell asleep in the ski mask a few times. So there'd I be, at 3:00 a.m., with my covers shoved down to my waist, my pajama top hiked up to expose my belly, my hands arranged with my palms out, and a ski mask covering my face and neck.
I've had lifelong insomnia and am accustomed to being awake for several hours every night, but even once I got the ski mask thing figured out, being awake for several hours several nights per week because you've got some serious nerve issues going on in your face has a way of impacting your waking life. My daytime cognitive fatigue got worse and worse. I struggled terribly with concentration and had a really hard time taking information in--just the littlest bit and I'd get overwhelmed, or it would just slide of my brain. I couldn't think and I most certainly couldn't write. It got to the point where wanting to write but not being able to became more painful than not wanting to write at all, and so I gave up the very last thing I'd been holding on to since my migraines turned chronic and taught myself not to want to write. I had to accept that I might never write again and to be okay with it. As a measure of how miserable I was, I actually did it. I gave up writing, I gave up a piece of my soul, a crucial chunk of my identity since I was six years old.
My diminished cognitive capacity and my fatigue and increased level of migraines meant that I started spending a lot more time in bed during the day. We're not talking about "oh, I'm so tired!" fatigue, we're talking "I can't be upright one second longer" fatigue. I had no choice. Sitting in my bed saved me just enough energy over sitting in a chair that I could aimlessly look at (though not necessarily engage with) the internet, or watch an easy-to-process show, or read, instead of doing nothing. I find it better to do SOMETHING over absolutely nothing, even if that something, like reading, is hard on my eyes, because if I do nothing, then I have no choice but to sit and observe my misery and that really isn't helpful. So I sat in my bed, leaning against the pillows, reading advice columns (the level of entertainment I could handle), and accordingly wrecked my neck and upper back. My neck got horribly stiff and my occipital region got all inflamed and I had nasty tension headaches all the time, which in turn caused migraines, which in turn made it so I had to spend more time in bed. I KNEW it was a vicious circle, but I really could not be up. I did not have the energy required to spend sitting upright in a chair.
So I had the nasal nerve issue, and the neck issue, and I also had some kind of issue with my gut. It wasn't just that I was terribly bloated and gassy, it was that I clearly had some kind malabsorption going on. It seemed that no matter what I ate, I was always on the verge of hypoglycemia. (And far too often, over the edge.) My gastroparesis already makes it hard to keep my blood sugar up and steady since I never know if/when the food I ate is going to be digested, but this was worse than usual. I spent way too much time feeling shaky and spacey and wiped out. Eventually we figured out that I was experiencing SIBO--Small Intestinal Bacterial Overgrowth. This is likely due to the gastroparesis, since they have found that motility disorders increase your risk of developing SIBO. What happens is that you get too much bacteria in your small intestine. In simple terms, the bacteria compete with you for carbohydrates and turn them into gas while also impairing the ability of the small intestine to absorb nutrients. It doesn't help that, due to my gastroparesis, my diet consists largely of easy-to-digest simple carbohydrates, the preferred good of the bad bacteria. I took some nasty antibiotics that wiped out the bacteria in the small intestine, followed by some potent probiotics, and I felt so much better! I could go eight hours between meals! Everything I consumed got absorbed! My hugely distended belly flattened! It helped so much...and then it came back. I spent far too long in denial before I again took the antibiotics and got dramatically better and resolved to act swiftly in the future when the symptoms cropped up. I've had three episodes of SIBO now and am hoping that there won't be more, but I know better than to bet on that kind of thing.
Eventually, because wearing a balaclava over your entire face is not idea for sleep, I sought more help for the issues with my facial nerves. Ultimately, the treatment that has worked best is lidocaine nasal spray, lidocaine cream to use on my face, and hats. It's not perfect, but it helps. My facial nerves are so sensitive that this point that they can't tolerate being exposed to temperatures below 55 degrees. So if I have to go outside--and I go outside several times per day with the dogs--I need to wear a fleece neck warmer pulled up to just below my eyes, a beanie pulled down to my brows, and the hood up on a sweatshirt to make sure there aren't any gaps in coverage at the base of my neck. If it's sunny and there's no breeze, I can make do with just a sweatshirt with the hood up and cinched tight. Thus, I have to wear some protection over my neck, head, and face, at least at nights, nine months out of the year. I also can't tolerate cool air blowing directly on my face. That means the vents in a car must all be angled away from me and directing the flow of my air conditioner away from the head of my bed. The result of having any too-cool air touching my face, whether from outside temperatures or indoor fans, is multiple days of heightened nerve sensitivity, causing a cascade of issues between pain, fatigue, and brain fog. I've grown skilled at managing this stuff, but it's been a rough road with a lot of interrupted sleep, a lot of nerve pain, and consequently poorer quality of life.
Then, in March of 2020, I came down with a prolonged case of COVID. AND breast cancer. As if I didn't already have enough issues! My experiences with COVID and cancer will have to be a topic of another post if I'm ever able to write again.
So why am I writing now?
Because I have to talk about Bixby.
The last blog post I wrote before having to make the hard decision to stop writing was about Nala, my newly adopted former puppy-mill mama dog. When it became clear that Nala would benefit from having a people-loving, happy-go-lucky dog to make her feel safe and show her the ropes, we searched for what would amount to a service dog for her and found just the right guy in a dog named Bixby. He changed her life dramatically for the better, changed our lives for the better, too. We had five years and eleven months with beautiful, bodacious, bobblehead Bixby before losing him suddenly and far too soon to cancer.
I need to write about his death and the writing I've done so far is much too long for just a Facebook post. But I can't write about his death without ever writing about his life and I didn't want to jump back into blogging after a five year hiatus without talking about why. I started this post back in 2018 or 2019, added on to it in 2020, and am completing it now in 2023. Once I'm done with Bixby, I may once again have to stop writing. I just don't have the capacity for that kind of cognitive exercise most of the time. But some things MUST be written.
