Pokemon Go… Gently

Fellow Spoonie Pokemon Trainers! I’ve figured out a few tricks in order to get a good experience of playing Pokemon Go and not completely spending all of your spoons for several weeks.

  • If you close the app and just go to the home screen (don’t close it completely or you’ll have to go through the lengthy log in process every time) you can open it up again and your GPS/character will be wandering around for a bit. This counts as distance. I’ve been doing this for hatching eggs in Houston, where it’s almost impossible for even abled people to go out during the day in the summer.
  • Use Incense! You can attract Pokemon to come to you rather than spending spoons to go searching. You’ll usually get more common Pokemon (Bug and Normal types), but it adds up! The more stardust you have, the better.
  • Lures! You don’t have to walk too much when you’re at a Pokestop with lures. They come to you. Make sure you’re well stocked on Pokeballs.
  • Get a friend to drive you around. You’re in charge of catching Pokemon for them, though. Do not Pokemon and drive. It’s actually  hilarious trying to catch two at once. Maybe do this around a neighborhood or empty parking lots where erratic driving is a bit more forgivable.
  • Stock up on common Pokemon in your area (Pidgey, Rattata, Caterpie, Weedle, etc.) and their respective candies. Then, use your Lucky Egg and evolve them during that 30 minute period. You gain about 600 EXP when you evolve something, so with the Lucky Egg, you’ll get 1200 EXP for one evolution! You don’t have to use stardust to evolve anything, either.
  • Got a wagon? Use it. Have friends or family members pull you around. It’ll remind you of the good old days. They seem a bit better for rougher terrain than wheelchairs.
  • Here’s something I’ve discovered myself! If you’re in the same spot for a while, some random Pokemon just show up! It’s usually the more common ones in your area, but the more stardust you can get, the better.
  • How to get whatever Eeveelution you want: (Ok, don’t kill me if this doesn’t work, but I myself have seen two successful desired evolutions with this method. I’ll update it once I’m able to do this myself since I’m low on Eevee candy.) You nickname the Eevees before evolving them. It’s Rainer to get Vaporeon, Sparky to get Jolteon, and Pyro to get Flareon. This is based off of the episode from season 1 of Pokemon where the kid brother gets pressured to evolve his Eevee using an evolution stone. Please comment below if this method actually works for you! I don’t want to be spreading misinformation.
    Edit: I’m absolutely positive this is real. I’ve seen it about three more times and I’ve done it myself to get a Flareon and a Jolteon after getting two Vaporeon by chance. It works.
  • The curve ball. You can do this by spinning the Pokeball around in circles before you throw it. You can tell it’s charged up if you see sparks flying from it. It’s a bit harder to catch stuff, but you get an extra 10 EXP for doing it successfully.
  • Here’s one I’ve just heard recently. You can download the Ingress app and search for Pokestops in your area since the Pokemon Go app doesn’t map out outside your area. Landmarks are also marked in the Ingress app so you can plan out routes and breaks. Pokestops refresh every 5 minutes or so, so you can rest in a shady area near one and farm items and 50 EXP every time.
  • This is something I have been trying to tell myself, but know when to stop. I got really close to hurting myself from walking nearly 5 km in one go to hatch an egg. My knees and ankles were radiating with pain. I was surprised that people near me couldn’t feel it. Don’t do that. Ash wouldn’t want that. He knew when it was time to stop and take a rest for the day. There’s no need to feel like you need to compete with others that are playing. It’s just a fun game (that should’ve probably had a bit more time spent on it with all the server problems there have been, but I digress).

And as a final question to Spoonie Trainers: I know we all can’t go on a Pokemon journey, but what kind of life do you think you would have if Pokemon were real? I’ve always pictured myself keeping them as pets or guard animals – most of them being abandoned strays before I find them. This is the case with almost all of my pets, so I figured that wouldn’t change in this fantasy world.

Now please excuse me, two Eevee just showed up and I’m freaking out.

Edit: The game crashed as soon as I caught one of them. Of course.

 

Why You Should Date a Guy with IBD

So I feel like I should be a different gender while writing this, but I’m working with what I got. I’ve got a health problem where people have varying degrees of the same symptoms, so I’d still be where I am if I were a guy. I’m writing in the defense of people I know who have a hard time finding someone to stick with them, guys with chronic illnesses. It’s rough living life with a chronically inflamed colon. I’m having to dart in and out of the bathroom while editing this because I’m currently in a pretty bad flare right now.

But I digress, here’s the list you actually came here to see.

*Disclaimer: This is geared for mostly for straight women, but I guess a gay man could benefit from reading this list as well.

  • He makes plans ahead of time.

There’s nothing better than a guy who’s planned out the evening. I’ll bet that when he agrees to a restaurant, he knows some great, safe foods that you can get there. He also will know where the bathroom is well before you’ll need to go. When you have IBD or any other kind of chronic illness, it’s hard to allow yourself to be spontaneous.

  • Staying in is always on the table for dates

Netflix, hot tea, and blankets are always a safe bet for someone with a chronic illness. Getting to unwind is a great way to recharge spoons. You’ll also have first dibs on snacks like popcorn and pizza since he will most likely be avoiding those.

  • He’ll actually know what cramps feel like

Believe it or not, this is 100% true. Whenever I’m flaring up, it usually takes a couple days to figure out if it’s a flare up or if my period is coming up. Luckily for guys, they only have one part in the general pelvic that’s messed up while I have a couple, if I were to be on my period at the same time during a flare. He’ll definitely have heating pads and some sort of comfort suggestions available for you.

Also, hey, you’ll both be losing blood at the same time. Misery loves company, right?

  • He’ll know how to listen

Not being listened to in a doctor’s office is one of the most infuriating things. Because of this, I always know to wait until I get all of the information before I start making a response. If someone were to have gone through the same things that I have, they would probably act the exact same way.

  • He’ll understand your issues with food (if you have any)

This point may not apply to you, but he’ll understand any sort of body or weight problem you’ve ever had. I get upset if I know if I’m getting either too fat or skinny. My body has changes based on that particular day. His will change, too. Intestinal bloating, gas, stretch marks from steroids, and all of that. If he’s a true human being, he’ll get self conscious too. The most self conscious I get is when I know my face is puffy from taking Prednisone for a long time. Wanna cut out gluten? No problem. You can do it together. You’ll be safe turning to him for any body image problems you may have.

  • He’ll probably know how to cook

Emphasis on probably, because this one actually doesn’t apply to me. I’m an awful cook, but a decent baker, I guess. I do know how to put together simple meals, though, that don’t upset my stomach. Most people with IBD can put together safe meals that everyone could enjoy because of the limited diets we have.

  • He’ll have a great sense of humor

If he’s not already a bitter grumpy puss, then he probably turns to the one weapon those with chronic illnesses have: humor. Poop jokes, or any type of bodily humor, is the best. A guy getting kicked in the nuts on home video? Classic. He’ll always have some sort of joke ready at the moment it’s needed.

  • Final notes

This is me hamming up the pros, but there are definitely going to be more cons. There are times where people with chronic illnesses have to think about themselves more than other people. Whatever illness he does have, it isn’t going to be easy. You can walk away whenever you want, but he’s still going to be sick. There are probably going to have to be hospital visits where you’ll have to help him out. Hospitals can be scary when you’re alone.

Have You Tried Yoga?

I found something on Tumblr that encompasses my feelings about yoga being used to treat disabilites.

Ok so I need to write out why the “have you tried yoga” thing bugs me so much. First of all, I know my body better than you so stop. You know nothing about my condition. You are not a qualified expert (and some doctors don’t even fall under this catagory as they tend to shy away from people with chronic illnesses). You are not a person living with this disability. You cannot understand or relate, as much as you may want to. I am the one living with this not you. Secondly, it places the blame on me and not on my condition. It suggests that I’m not trying hard enough to feel better so the way I’m feeling is my fault. My dad tells me all the time that I would feel 100% better if I just exercised more. Living with a disability is difficult enough on it’s own so don’t try and suggest to me some idiotic suggestion about something you know nothing about. I do not chose to feel this way and I will not be cured by simply exercising or doing yoga. Please add on to this if you have other thoughts.

In all honesty, I love yoga. I love how calming an environment a yoga class can be if you can ignore the smell of the cardio class that just finished. It was one of my favorite things to do for skating. I was one of the best of my skating friends at it, if that even means anything. Can you be good at yoga? I was pretty strong, but not as flexible as most people expect figure skaters to be. I accepted it.

However, I haven’t attended any sort of yoga class or done it on my own since I started experiencing my IBD symptoms. Why?

Because I have only limited amounts of energy as someone with a chronic illness, so I spend my time and energy in ways I feel like it would be the most productive. I don’t feel like it would help my symptoms or help my joint pain.

Instead, I allow myself to rest and have some time to myself. I am an introvert, but I often find being with one or two other friends refreshing.

So, next time you meet someone with a chronic or mental illness, don’t ask them if they do yoga. That just makes them feel like they’re not doing enough to treat their illness, when they’re most likely doing a perfectly fine job. You’re placing the blame on them for not being healthy. You can’t know how they are feeling at that exact moment.

I’ve gone though outings with friends dealing with mild nausea and a headache. Once, I asked someone if they noticed anything weird about me as I was out with a fever (I was flaring, so nothing contagious, I promise). They said I looked fine.

Instead of asking someone with a chronic or mental illness if they’ve tried yoga, ask them how their day was.

The Difference Between Sympathy and Empathy

Watch this video before reading

As someone who’s more often on the receiving end of someone else’s sympathy than giving it, this is really something I needed to hear. When you have two chronic illnesses, one actually caused by the other, you hear some crazy shit from people whenever you voice your worries.

Me: This past flare up made me lose 20 pounds.

Healthy person: Woah, I wish I could lose weight as easily as you!

Me: There are times now when I can’t leave the house for several days in a row.

Healthy person: I wish I could afford to stay home all day.

Me: I’m tired.

Healthy person: I’m tired too.

Me: My IBD is getting worse.

Healthy person: At least it’s not cancer, right?

The surprising thing about all of that is that they all meant well.

Yes, losing weight is great. I’ve been wanting to lose the weight I gained while on Prednisone for some time now, but not by physically not being able to eat or drink anything substantial for several weeks without vomiting violently.

As an introvert, yes, staying home all day is great. It’s not because I want to, though. It’s because I have to. However, sometimes I stay home too long and all I can manage to do is lay in bed and stare at my ceiling. That’s not great.

I rarely actually say that I’m tired. Why? Because I’m always tired. I could get 12 hours of sleep and still need a nap later. When I was in school, I’d make it to class 95% of the time completely exhausted and fatigued. Why? I don’t know. When I say “I’m tired”, the translation is “I’m more tired and/or I feel worse than usual.”

Yes, I’m very glad it’s not cancer, but people with IBD are five times more likely to get any sort of bowel cancer. Fuck you for invalidating the severity of my illness.

Rarely have I ever received empathy from other people. Luckily it’s a bit more common now since I know a fair amount of people now who have chronic physical/mental illnesses, thanks to social media. We ask each other for health advice or about a medication side effect. We complain about how stupid doctors can be. I see them documenting their experiences just as I have been doing. We take selfies in our hospital gowns, trying to make our experiences bearable. We stay connected online because that’s the only socialization we can manage.

At 22 years old, I’ve consumed about 4 gallons of Golytely in my lifetime. I’ve also documented my progress through it in every colonoscopy prep I’ve had. Why? Because it’s horrifying. It’s awful. It’s embarrassing. I need someone to laugh with me about it. The adult wards in hospitals are often neglected by volunteers or celebrities, so I have to make do with what I have.

JJ Watt isn’t going to be showing up in any hospital room of mine, that’s for sure.

I’m not here to ask for your silver linings. I’m here to tell you about invisible illnesses and what they do to a person even though you can’t see. Everything that happens to me could very well be the plot of a body horror novel. My immune system is literally eating my insides. That is a terrifying concept to a healthy person.

I completely understand that people mean well, but please step back and think about what you’re saying. “Get well soon” is a frustrating phrase when you have an illness with no known cure. I’m not going to get well soon. I also understand if you can only sympathize with my situation, but please don’t invalidate what I’m going through by pointing out something else.

Things you can say to a hurting friend instead of starting off a sentence with “at least”:

  • That really sucks, I’m sorry.
  • Do you want to just vent? I’ll listen.
  • What kind of ice cream do you want me to bring you?
  • Do you need any help around the house?
  • Do you need me to take notes in class for you today?
  • What’s your pain level today? Do you need your pain medicine?
  • Have you taken your medication yet today?
  • How many spoons do you have left?
  • I’ll be there for you.
  • I don’t even know what to say right now. I’m just so glad you told me.
  • All nine seasons of The Office are on Netflix.

The Invisible Hot Sauce World

I’ve come up with a good way to explain to normal people what it’s like to have IBD. My boyfriend mentioned once that me trying to figure out what to eat is like trying to find good food that’s not covered in hot sauce, and that’s what triggered this idea.

Imagine that there’s this type of hot sauce that gives you the most pain you’ve ever felt. Your stomach aches, you get the worst diarrhea any person could ever get. It’s not even worth adding to your food. The thing is, it’s invisible. You can’t smell it, taste it, feel it, or anything.

Then imagine you lived in a world where food was covered in it about 80% of the time. Everyone in invisible hot sauce world loves it except for you, because it makes you sick. In that leftover 20%, there’s 15% going to food that is definitely not covered in invisible hot sauce.

But eating just that 15% of the types of food there are in the invisible hot sauce world gets really boring. You miss regular food that’s not plain potatoes or chicken with zero spices. You get to the point where you’re desperate enough to take that leftover 5% and run with it.

In a world where 80% of food is covered in invisible hot sauce, 15% is definitely not covered in hot sauce, there’s a 5% chance that a normal food that you eat isn’t covered in hot sauce.

So after this breakdown, you order a greasy fast food cheeseburger, some curly fries, and a milkshake. There’s a 5% this meal won’t make you sick, but after being stuck with plain toast and chicken broth, you’ll deal with anything.

There’s an 80% chance it’s covered in the invisible hot sauce and there’s a 5% chance it isn’t.

This is why some days I can’t get myself to eat whatever is put in front of me. I’m just not ready to take that chance.

Mental health in lieu of physical health

Hey guys! I’m doing so much better than I was two months ago. I’m finally on Humira! I’ve had two doses already (6 shots total) and I feel already 100% better. Humira burns like crazy when you get the shot, but it’s a great trade off because I can finally eat things like a normal human!

But today I’m here to talk about something. Mental illness vs. physical illness.

It’s this BuzzFeed post that set me off today, but I’ve been thinking about this for a long time now.

Many people seem to think they understand physical illnesses more than mental illnesses. You often hear people saying to people with mental illnesses that it’s all in your head and you can stop being depressed by just thinking happy thoughts. They couldn’t be more wrong about that.

With physical illnesses, most people tend to be understanding if you have a cold or the flu, or even a migraine. They tell you to take some medicine and rest. You may even get reprimanded if you try to go to work/school again too early because you might get sicker.

When it comes to invisible physical illnesses, that’s the outlier no one expected.

I’ve lost count at how many people have suggested different diets to me instead of letting me eat what I feel comfortable with. How do you expect me to go paleo when I can’t even eat a salad without doubling over in pain a few hours later? I can’t go vegan or vegetarian, as much as I’d like to.

One time I tried kale and it came out looking the same way it did when I ate it. Painful? You bet.

I also like steak and chicken a bit too much to let meat go. Plus, chicken is one of the few things I can eat without any problems afterward.

I’ve also had people tell me “At least it’s not cancer!”

Like really, I’m supposed to be overjoyed that I don’t have something that can potentially go into remission and possibly get cured. Ulcerative colitis tends to go into remission if you get the right medication going, but it can come back at the drop of a hat.

I’ve heard general statements that my fatigue is all in my head and if I just workout more, I’ll be fine.

Yeah, you try telling that to my anemia. I’m sure it’ll start letting up after I pass out on an elliptical a few times.

What I’m trying to say is, that physical illnesses are often thrown under the bus when you’re talking about mental illnesses. I’m starting to get really tired of people refusing to see what they’re doing is destructive. When I say I’m sick, I’m fucking sick. It probably doesn’t look it, though.

I nearly died from blood loss because no one believed me when I said I was sick until it was almost too late. I never want to be that sick again.

Now, let this be known that I’m nothing but for promoting mental health awareness, but if your method of informing people is to compare it to making people doubt physical health, you’re doing it wrong.

Don’t forget that invisible illnesses exist. Mental illnesses are really just the cause of a physically “sick” brain. Really, mental illnesses are physical illnesses too. There’s a reason why medications often work wonders for people.

Mental illnesses should be taught alongside other invisible illnesses. However, most people don’t understand invisible illnesses and probably will never understand – not even if someone close to them has one. You can’t understand what it’s like to have an invisible illness unless you actually have one.

I learned this myself the hard way.

Two Years Later

So it’s been two years since I’ve been diagnosed with ulcerative colitis. I remember sighing with relief when there was finally a name to how I had been suffering for 8 months. What I didn’t know was that this would be forever.

This is where I’m supposed to write some sort of inspirational thing about how if I can do it, you can too. How I’ve gone straight back to school or work right after being hospitalized because I’m so strong as a person and how I bet you could run that marathon if I can get out of bed in the morning. I’m not going to bother with that because I hate blog posts like that. I did the things I did because I had to. You would do the same thing if you were in my position.

This summer has made my illness feel even more invisible.

I currently feel like I have a perpetual stomach flu, but I’ve been like this for so long, even I’m growing impatient. Fevers, nausea, and vomiting have been the tip of the iceberg. It isn’t exactly how I wanted to spend my first summer as a post-grad.

My fatigue has made it difficult to write much of anything. I’ve had to take breaks just writing this. I can only be grateful that I’m done with college and people expecting me to change out of my pajamas.

What’s mostly upsetting is that results on there being anything wrong haven’t shown up on any sort of medical test that IBD requires. Not even a colonoscopy.

I had to go through all that ridiculous prep for them to say that the inflammation “wasn’t that bad.”

It’s not that I want there to be anything wrong. I just want what’s going on to be figured out.

I’m currently on my way to being put on Humira, because whatever I had during my last hospital stay is back at full force. My GI doctor wanted me to be put on Imuran during my last visit, but I don’t know about that anymore.

Either way, I had to get my blood drawn for both of those. I’m almost hoping that something shows up for my most recent blood drawing, because I had a bit of a fever when I was there. Losing blood when you have a fever isn’t a fun experience, I’ve discovered. It felt like I was on the giant teacups at Disney World, but more nauseating.

As far as I know, Imuran and Humira do about the same thing. The difference is that Imuran is a pill and Humira is a shot that you have to give to yourself.

I’m not looking forward to giving myself shots.

On the bright side, I am doing a lot better than last year, inflammation-wise. I’m not in danger of having to get surgery or any sort of other procedure, either.

I’m just stuck waiting and hoping things smooth out.

A blog about a chronically ill college student