Tag Archives: chronic illness

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.

 

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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 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.

Spoonie Survival Guide to Finals Week

There’s nothing more horrifying to a college student than finals. So what would a chronically ill student have to do to survive these dreaded times? My body can’t handle the extra sugar, caffeine, and junk food that everyone turns to for the extra boost, so I’ve had to figure out a different way to keep myself alert and focused enough to study and finish papers.

  • Drink plenty of water.

I’m probably going to profess this until the day I die. Water is ridiculously important when it comes to health. It definitely works better than caffeine with keeping you focused. Caffeine is a diuretic, which means it’ll dehydrate you like crazy. When you’re dehydrated, you’ll actually feel like you’re hungry. Weird, I know, but trust me on this. Mistaking thirst for hunger is a surprisingly common thing. Eventually, you’re going to be more focused on getting food than actually studying. If you’re concerned about low energy levels before finals, search out some B12 vitamins (it’s a healthier amount of what’s in Five Hour Energy shots). Start taking them a couple weeks before, so it’ll be in your system.

  • Naps

I’m so sad I never took advantage of naps when I was in kindergarten. I used to just lay there until nap time was over, since I was never tired. Now I feel like I’m making up for all of the ones I missed just in a semester. Unfortunately, I don’t have a dorm on campus, so I usually end up having to take a nap in a public place. Because of that, there are a couple pictures of me floating around in the world of me curled up on a couch somewhere to zonk out for a little bit. Here’s a picture to help you time out your naps. Click on it and it should open up bigger in another tab.

Naps

  • Sleep

Don’t even think about pulling an all-nighter. You don’t have enough spoons for that. It’s not worth it. You don’t have as much energy to waste like you used to. As a spoonie, you really have to be careful with managing your spoons in general, but finals is super important to watch over them. You can’t guarantee that you won’t end up crashing once you’re done. It may end up happening before. If you do have to stay up late, try to at least get 5 hours of sleep. I say at least 5 because I got only 4 before one final and the struggle was unbelievably real.

Also, if you’re confused why I’m talking about spoons, check out Christine Miserandino’s The Spoon Theory. It’s really informative with explaining the lower energy levels those with chronic illness have to deal with and how we manage our time based on it.

  • Take your vitamins

During this time of stress, your body is probably going haywire and your immune system probably can’t take much more of this. Vitamins will help you fight off the germs you encounter. I personally take regular gummy vitamins, but also extra ones like calcium, Vitamin D, B12, and biotin. Also, give yourself an extra boost by WASHING YOUR HANDS (seriously), avoiding sharing food and drinks with friends, and also avoiding your more contagiously ill friends. It’s nothing personal, it’s just business.

  • Wear comfortable clothes

Whenever my stomach is acting up, the first thing that happens is that I get bloated. I usually just make a joke on how it’s a food baby whose name changes constantly. I have a few pairs of jeans that can handle it, but they’re so worn out that they’re almost unwearable. I tried wearing a different pair of jeans, but it felt like they were cutting into me. It was super uncomfortable and hard to focus on anything else than wanting to change clothes. The days I had my finals, I just went ahead and hobo’d it. Sweatpants, Uggs, an old t-shirt, and a hoodie are the way to go. I have no one to impress anymore.

  • Pace yourself

This isn’t a race, it’s a marathon. You’ve got to make it to the end just like everyone else. I personally don’t have any sort of academic accommodations for my illness other than a brief e-mail of “Hey, if I ever run out of the classroom, it’s because I have a disease called ulcerative colitis and it causes me to have to make frequent bathroom trips. I promise that it’s not because I hate you” to my professors at the beginning of the semester. Luckily, I’ve never been in the position of needing to go to the bathroom urgently during a final/test (yet). That being said…

  • Go to the bathroom BEFORE your exam

You don’t need to go, you say? Well, you’re going to regret you said that 30 minutes into your final and there’s no escape. Pay attention to how your body’s doing that day and prepare yourself as needed. The extra water you’ve been drinking is probably affecting you.

  • Watch carefully what you eat

Like I said before, I haven’t had any urgent needs to run to the bathroom during a test yet. It’s because I always avoid eating anything risky the day before and the day of a test. I always have to avoid my house’s kitchen pantry during this time because it’s always weirdly stocked up with granola bars, seeds, mixed nuts, and trail mix. All of those cause me intestinal pain, not to mention wicked heartburn. I’m usually tempted to grab something from there since it’s so easy, but I have to stay strong and remind myself that the pain isn’t worth it. I also suggest this because I’ve always been slightly paranoid about not being allowed to go to the bathroom ever since this one kid in high school wasn’t allowed to go due to the risk of him cheating. Since I’m me, I could probably get away with it, but it’s not worth the risk in my book.

  • Relax

Breathe. It’s just a test. If you’ve prepared yourself well enough throughout the semester, there should be nothing to worry about. If it’s a cumulative final, think of it as a review of the year. I have the hardest time convincing this to myself. If you’re like me, stress is a huge trigger to flaring up. I’m pretty sure finals last semester actually made me end up in the hospital, because that’s where I ended up maybe two weeks later. The only reason why I say two weeks was because I was in a two week writing class at the beginning of the summer. Also whenever I stress out, I get the worst knots around my shoulders. That’s where I end up carrying a lot of my stress. I can’t give much advice on reducing stress because I still have trouble managing it.

  • Treat yo’self

Treat. Yo. Self. You’ve been working hard, so you deserve whatever you feel up to doing. Set up little rewards whenever you get finished with something. Try to avoid food rewards, even though it’s tempting. Let yourself stretch your legs or walk around to clear your head. I usually let myself play video games for a little bit. Maybe even find a dog to pet.

Say hello to Grace, a therapy dog that was on campus.
Say hello to Grace, a therapy dog that was on campus.

A New Diagnosis

One thing that I left out from my update yesterday is that I was diagnosed with a new illness. I now have type 2 diabetes. It’s because of the Prednisone that my body has become so dependent on. A side effect is that your blood sugar can skyrocket while you’re on it and that’s exactly what happened to me. It was more likely to happen because I have several family members with both types, but mostly type 1. It was only a matter of time.

Basically, Prednisone is now hurting me more than it’s helping me, but if I’m to ever get off of it, I’m going to end up in the hospital again.

In the hospital, they had done a three month test on my blood to see if it’s been high for that long and it has. Well… I’ve been on the steroids almost constantly since March. I’ve been off of them for maybe a little over a week total since then. I literally can’t get off of this medication until I start on some sort of alternative that can suppress my immune system since Remicade didn’t work long enough.

Now that school’s started again, things have gotten kinda rocky with how my health can hold up. I feel like my friends expect me to keel over at almost any second with the questions of people asking how I’m doing.

I’m not really mad or annoyed or anything, obviously. I know it’s because they care or they’re curious to how I’m still even kicking. It’s just funny to hear them ask something and see their eyes saying something else as they look me over. Invisible illnesses are tricky like that. With a cold, you can see someone’s runny nose and pale face. With me, there’s just about nothing. At this point, you can only see the bruises on my arms as proof that I was in the hospital.

And maybe my hospital wrist band, if you’re looking for it. I’m still wearing that for some reason.

I’m now on a new medication called Janumet. My mom was on it for a while and she said it’s worked a miracle on her. I’m not sure what to think. She had my primary care doctor put me on it even though my doctor in the hospital suggested two other medications for me.

I guess it’s better for me that I’m taking one medication instead of two. I already breakfast on a steady diet of at least six medications to start off my day. Most of them horse pill sized.

One thing I’ve discovered, though, is that I need to eat before I take Janumet. It tends to make me a bit nauseous if I don’t. This makes my morning dose a little difficult because I’m not much of a breakfast eater.

I know, I know. Shh.

But I’ve taken this news pretty well since the 23rd of August. I had received news months ago that I had the mark of high blood sugar show up in a blood test. A second test was done, which confirmed the first test. Then a third test was done at my primary care doctor’s office, which had said that my blood sugar was normal. That test alone dashed my fears for several months, but here we are now with an official diagnosis for diabetes.

Watch out, world, this ulcerative pancolitic diabetic doesn’t have much left to lose.