Tag: Food

No Hunger. No Thirst.

~ Olivia Hill ~ Leave a comment

It took me about 4 years to realize, just this June, that I don’t experience hunger or thirst anymore. I remember that I did experience them, but I don’t remember what it was like.

When my boyfriend, or my parents, or my coworkers say they’re hungry, they mean they’re experiencing hunger. For me, it means I’m experiencing stomach growling, or I’m feeling faint and recognize I should eat. I have an appetite and can tell you which foods I could eat, but I have no motivating drive to eat immediately. I do, however, know when I’m full. It’s strange and to be honest I haven’t spoken with my doctor about it yet.

More documented globally, but also not discussed with my doctor personally, is my adipsia, or a lack of thirst. My body needs water, but I don’t feel the thirst. I’ve had to set alarms to drink water and often have to push myself to get up and drink.

If I get too dehydrated, I’ll have a panic attack not related to my mental state. I still won’t feel thirsty, and it took me a long time to figure out that drinking water, especially before bed, alleviated these. I was looking for something to take my mind off of it, chose to get some water, and voilà: relief.

I think (I can’t know for sure) that this is because of a medication I was asked to try in 2015 to help my symptoms. As it happens, I’m allergic to it. The first day, I dry heaved for hours and lay on my floor waiting to die. The second day, I realized I hadn’t had any food or water in 24 hours and I didn’t feel the desire (or appetite) for them. There was a weird hole where those feelings had been. Unless you’ve experienced this kind of absence of feeling in some way it’s difficult to explain. I immediately contacted my doctor then, and listed the medication as an allergy. She promptly asked me to try continuing it for 3 more days. No thank you.

I eventually started getting my appetite back, if I put food in my mouth it tasted good and I could eat until full, and I could basically chug water until I’d drank enough, but I still didn’t feel hungry or thirsty. So, I learned to watch the clock.

A weird thing: I craved sugar. Always. Science has shown us that sugar is extremely addictive. I can really only assume that in my case, I still have my addiction to processed sugar so I can reach for that any time. I have to work hard to remind myself that it doesn’t count as a meal.

I gained, I think, a very small feeling of hunger back since I do have an appetite, but thirst is another story. If I’m not active, I can literally sit there for 24 hours and never notice I need water. My dizzy spells tell me I’m thirsty.

It’s strange, and I’ve seen some people in chat threads say they’ve experienced the same thing. I wonder if there’s something they can do about it, but if not it’s pretty easy to manage and work around. If you’ve experienced this, leave me a comment about it!

Me and Food

~ Olivia Hill ~ Leave a comment

As a Spoonie, my challenges are unique because no one’s life is the same. One aspect I know isn’t unique is the anxiety that comes with eating during or post-gastric illness. It’s pretty common for me to find people who relate to food avoidance due to illness.

When I had my first bout  of illness, I was really afraid to eat at all. I spent months in bed, fighting nausea and eating made me feel so much worse. One bite of food meant going from sitting upright, to curled up in the fetal position kinda wishing I could die. Literally. I would tell my mom a lot that I wanted the hospital to just give me sedatives so that I could sleep through everything, or I was really close to just giving up on life. Simple things like sitting up, or staying awake for more than a couple of hours became complicated and difficult. I took a lot of hot baths to soothe my stomach, and went days with minimal food.

Goldfish crackers probably saved my life.

They were easy to digest, so I didn’t get sick from eating them. I’d go through a large seal-able bag a day of the whole grain baked kind. The salt probably helped keep my electrolytes up too. Aside from those, I could eat a little bit of apple sauce, and white bread (wheat bread is still a no for me even though I used to eat it daily), plus juices and broths. Some days, I’d get so hungry I’d give in and ask for an Arby’s classic roast beef and a sprite, eat it all, and then regret it. But, I was really lucky to be born with a strong stomach, so I actually kept the nutrition from everything I ate instead of vomiting. That in itself was probably torturous just because if I had gotten sick I probably wouldn’t have felt nauseous anymore. The reality is, that torture meant I didn’t need to be hospitalized or need a feeding tube or TPN (basically IV food).

Processed food was the best for me, because I could actually digest it. Before my gastroparesis diagnosis, which came long after my Inappropriate Sinus Tachycardia/POTS diagnosis, I was using trial and error to find foods I could eat. Afterwards I was able to use what I had found, plus some good advice from the doctor and other gastroparesis patients, to find a better diet. I got really lucky, when CBD was legal to use, it, plus other enzymes I bought on Amazon, helped me eat enough to train my system to digest better. My particular type of gastroparesis is actually reversible and CBD oil was a huge help. I was really disappointed to see it become illegal in my state and am hoping that in the future that might get reversed.

One thing that helped me get through it was actually really problematic for my digestive system: laxatives. Because digesting food was difficult for me, emptying my system stopped me from being nauseous. This had obvious problems: I typically went to important events with zero food in my system and no water, and it wasn’t helping me heal. But, when it came down to helping me have some semblance of life, it was almost necessary for me at the time. Then I was introduced to CBD oil by a friend and I could actually live my life again. I could eat, and go out, and didn’t feel like I was half-living.

The one thing that stuck was that I still have go-to foods for days when I have plans. Goldfish crackers, Cheese-its, candy, processed food, soups, and Pop-Tarts. I eat a lot better now, but there are still times where I’m not getting proper nutrition, or enough fluids. When I do feel sick, I often make it worse by failing to eat or drink anything, just because I’m afraid of getting sicker like before. I also have a lot of anxiety about getting sick. When people say they’ve had the stomach flu, or even if someone totally random vomits and I don’t know why (could be a hangover, or food poisoning) I get a panic attack. I work around this a lot and am still in the process of getting through it so I can eat normally without worrying so much.

I was extremely lucky to have very mild, and reversible, gastroparesis. I’m lucky I even get the chance to eat again. I used to make big lists of foods I would eat if I could, and now I can eat most of them. Some I cannot because we found I have a lot more food allergies than I realized, but the list of things I can eat is still extensive. I learned a lot about myself and even reduced my instances of  IBS just by learning what foods irritate my gut. Moving forward I hope someday I can eat with zero nausea all the time, and not worry so much when others are sick.