Dedicated to Jillian for giving me the idea to write this article. Thank you.
Image taken from Imgur years ago.
Socializing is hard enough when you are a healthy, human being. You could be shy or nervous to talk to others. However, with a chronic, invisible illness, it's even harder. Imagine having that nervousness and shyness leading to vomiting, intestinal spasms, bloating, and many other things but the main culprit is fatigue.
Image taken from Imgur years ago.
So, what are some activities that you can do when you have a chronic invisible illness?
Personally, what I like to do is to invite my friends over for a board game night or for a movie night. We can have themed movie nights, like a Nicholas Cage movie night where we all sit around and riff the movies, or a serious movie night, watching a recently released movie on Blu-Ray. My friends and I really love board games, and I have a cabinet full. Usually, though, we will find ourselves in a game of Cards Against Humanity. If my friends cannot come over, I may call one of them on Skype or Hangouts and watch a movie with a person that way (we would be watching it at the same time at our respective houses) and talk to each other through the computer. I vomit with my Gastroparesis, so I am always conscious enough to ask my guests if vomiting will make them vomit. I really don't want to start a vomiting conga line in my house. If I get a yes to this question, I still have my Emesis Bags handy, but will try to run to the bathroom, if I can. Some people are really sensitive to others getting sick, so I'm always sure to double check. I might order them food or have snacks ready for them when they come over, but I can not partake. I usually just sip on a soda during the game or movie.
Recognize Your Limitations
I recognized my limitations early on. I cannot go out to restaurants, hike like I used to, go to movies, go bowling, etc. I consider that chapter in my life closed when it comes to socialization in a setting like that. I have to be creative and come up with new ways to socialize because of my vomiting and Gastroparesis. It doesn't mean that I cannot socialize, it is just that I can no longer socialize in those ways. I know that not everyone with Gastroparesis vomits, so individually, you have to recognize what your limitations are in order to work with them, and not against them, so you do not make yourself even more sick.
Video Gaming is Great for Good Gastroparesis Days
If I am having a good Gastroparesis day, then I usually play on my Xbox One, logging into the internet, and play with other people in my game. I can socialize with those people because I have a headset for gaming that has a microphone, which is my way of reaching others in the game, and depending on the game being played, being able to plan a coordinated attack. This also helps me deal with pent up aggression and negative feelings, because I can take it out on killing zombies in my game. That sounds hideous written down, but it really does help me. Additionally, playing the game with other people online helps me to build new friendships and to be able to talk to others. It's a nice escape from watching Netflix all day. Plus, I get to meet new people and maybe even learn new things about the game I'm playing that I did not know before.
Image taken from Imgur three years ago.
Coloring is Good for Stress
Coloring has been a good stress relief for me. I have always loved to color. There are a lot of different coloring groups on Facebook now, as well as websites, Facebook pages, and blogs. You could challenge your friends to a coloring contest and compare each other's work on Skype or Google Hangouts (if you cannot leave your house and if they cannot come over), and have someone predesignated as the judge. You could do those competitions for fun or maybe real prizes if you are feeling confident. You could have your friends come over and you could all color together. It's an activity that is easy, stress relieving, and is fun for everyone involved.
Movie(s) Night!
I mentioned this above because it is something my friends and I like to do. You can have your friends over for a movie night, or if you are feeling well enough, you can go to a friend's house for a movie night. It can be themed or not. It is all up to you. You can be just as creative as you want to be with it. I mentioned above we had a Nicolas Cage night because we like to make fun of some of his bad movies, in our personal opinions, and we love to watch his better movies. My friends and I have a tradition of having a scary movie themed night once every weekend in October. I love to have serious movie nights of movies just released on Blu-Ray that I haven't seen yet, and I love to re-watch favorites. Sometimes, my friends and I (even my husband and I will do this) download Rifftrax (which are the guys who did Mystery Science Theatre 3000) and listen to Rifftrax accompany the movie we are watching. It is a ton of fun and sometimes, I have issues trying not to stop laughing. My friends and I also had our own riffs to accompany the movie. This way, I can stay at home, but still be social.
Image taken from Imgur years ago.
Board or Card Game Nights
I mentioned above that my friends and I like to play Cards Against Humanity and board games. I have a china cabinet stacked with board games because I am a board game collector. I will say that I think my favorite game is Cards Against Humanity because it is SO funny! I always make anyone new playing the game to make their own card for my deck. However, if Cards Against Humanity is too dirty for you, an alternative is Apples to Apples, which is just as funny. My friends like to play Catan. I am not so crazy about that board game because it reminds me a bit of Monopoly, and leads to arguments. I love games like Trivial Pursuit. It all depends on your tastes and your friends' tastes on what board games or card games you play, but it's still a fun way to socialize when you cannot leave your house. With board games and card games, there are just so many options to choose from, so boredom is never an option.
A Knitting or Crocheting Circle
If you knit or crochet, you could ask your friends to come over and do that activity together while listening to music or the TV. I love to knit but I do not knit traditionally. I use a Knifty Knitter where I wrap the yarn around pegs and then pull them through. I mostly make scarves. It isn't hard to learn or do. I can make a scarf in three days, if I put my mind to it. I can do it while watching TV or just sitting around the house. It gives me something to do. This is definitely something you can do with your friends or if you want to do it on your own, that is fine too. There are lots of Youtube videos to teach you how to use the knifty knitter, as well as showing you different stitches, and different patterns you can do. Yarn for projects like this is also fairly cheap. I get the thicker yarns if I am making a scarf, and a counter to press if I want to make the scarf multi-colored. I have friends who have knitting circles. It is a very relaxing hobby.
Scarves that I have made for friends. I made my husband a Gryffindor scarf from Harry Potter.
Image Source on the image.
Arts and Crafts
My friend Denise loved to make cards. She would make homemade cards and send them out to people. My mother makes jewelry. If a lot of your friends do arts and crafts, and you have no knowledge of how they do their projects, invite them over and have them teach you. Additionally, you may be able to teach your friends some of the arts and crafts that you do in your spare time. You could found an arts and crafts circle that meets once a week. That might help with socialization and also help keep you occupied during the week so that you do not dwell on your stomach or pain. There are several groups on Facebook, Pinterest, Yahoo Groups, and Google Plus dedicated to arts and crafts. It might be nice to have the ability to learn something new, something you did not know before might be something you really like and take up as your own hobby. You and your friends could develop a schedule of meet ups and then present what you have finished and/or ask for help with projects.
Having People Stay Over
You could call your friends and set up a date and time for them to sleep over. You can be as creative with this as you want to, from putting tents up in your backyard to turning your living room floor in pillows and sheets. You can gossip with your friends and get caught up on what has been happening while you are at home and just spend some quality time with you friends. This way, you do not have any stress put upon you because you are not in public, and you do not have to worry about finding a bathroom. It helps you catch up and still be active in your friends' lives, even though you are at home.
Starting a Book Club or Movie Club
I started a group like this on Facebook Books, TV, and Movie Club where you can assign a book, TV show, or movie to your friends, give an amount of time for everyone to finish it, and then discuss it together. You can do this via Skype or Google Hangouts, etc if you cannot meet in person. In addition to that, you can recommend different TV shows, books, or movies for your friends to watch and they can recommend things back to you so that you have something new to do at home. It is a fun way to talk about a show, book, or movie without spoiling anything for your friends. Furthermore, it helps you socialize when you are too sick to leave your house. It's something I really like to do because I love movies. I also love to read. I've had books recommended to me that are out of my comfort zone, that I would not have heard of or read without my group on Facebook, and surprisingly, I found I really liked that suggestion. It helps you explore new avenues of genera you might not have thought of.
Take Online Classes
There are free online classes that you can take at some colleges. This would help you to make new friends without leaving your house. You can also increase your education at the same time! It would help to occupy your time so that you are not home alone, with temptations to be stressed or depressed. Colleges have free classes on a variety of topics, so pick one that you are really interested in. There are other places other than colleges that offer free classes, but you would have to look around for it. You can do anything you put your mind to. But, it would help to expand your circle of friends and you never know, some of the people in your online class might be in the same position you are.
Join Support Groups or Online Groups with Your Similar Interests
There are lots of support groups online now for invisible illnesses. However, you don't just have to join a support group for your illness - there are other groups based on similar interests, like crafts, for example. I would recommend joining a support group for your illness because it helps to have people who understand you, and you need a safe environment to vent in and ask questions. There are also all sorts of groups online for hobbies, and by joining those groups, you may learn new things about your hobby you did not know before. It could be a lot of fun! You would definitely meet new people in both kinds of groups and that will help you socialize if you are like me, and at home a lot. No one should be alone. In this day and age with social media and the Internet, no one should be alone at all. So, search whatever hobby you are interested in among the groups and see which groups fit you best. Do not forget that you can join more than one group.
Image taken from Imgur three years ago.
There are other ideas on this site I found, but a lot of these I have already covered off of the top of my head: https://undiagnosedwarrior.org/tag/socializing-with-chronic-illness/
This article talks about keeping friends with an invisible illness from The Mighty: https://themighty.com/2016/04/making-and-keeping-friends-with-chronic-illness/
This is another great article about how pain affects your relationships and what to do about it: http://princessinthetower.org/how-chronic-pain-affects-your-friendships-and-what-to-do-about-it/
This is a previous article I wrote on how to keep busy in a hospital that has ideas that might help you format them in a way to socialize with your friends: http://www.emilysstomach.com/2014/02/how-to-pass-time-in-hospital.html
Image taken from Imgur years ago.
I'm sure there are many other things you can do to socialize with friends and make new friends, but this is a good list to get you started. I have done all of the above and wanted to share it with everyone so that you do not feel alone. I know that invisible illnesses can be so isolating. It is very hard for me to leave the house because I vomit. I have wonderful friends who come over and spend time with me, and I skype my family, who live two hours from me, to catch up on the family and what is going on there. I hope this helps you. If you have any more suggestions to add to the list, feel free to comment. I will gladly keep adding to this list as I learn more things to do when you're stuck at home.
The idea was suggested to me (by my MD) that a blog/diary might help me feel better by venting my frustrations and struggles with Gastroparesis. Also, I hope I can help others who may have the same thing through my own experiences. For more information, please email: emilysstomach[at]gmail.com or follow on Twitter: http://twitter.com/emilysstomach or like us on Facebook: http://www.facebook.com/emilysstomach or Instagram: http://www.instagram.com/emilysstomach
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Showing posts with label social. Show all posts
Showing posts with label social. Show all posts
Wednesday, April 4, 2018
Monday, June 18, 2012
Woke up at 6am - and My Stomach Hates Me
My stomach managed to wake me up and I went straight to the bathroom and vomited. So much for that. I thought I was having a good day yesterday. I vomited up some of the food that I ate at the wedding reception, some of it wasn't digested (OK, I know that's probably TMI - but my blog is to help keep track of these things to tell the doctor). I have very intense stomach cramps. I also feel very tired, exhausted, and fatigued even though I slept yesterday and some last night.
I just took:
1 pain pill
2 anti-spasmotic pills
1 anxiety pill
1 muscle relaxer
2 anti-nausea pills
Between all of those, and I hope I can keep those down, hopefully I'll go back to sleep. I just hate waking up with that immediate need to be sick. And, as per usual, I whacked my knee on the side of the toilet again.
I just want to feel better. I'm going to call and make an appointment with the motility specialist. She's at Crawford Long, so that's a bit closer to me to get to. When I do drive, I have to drive around with a bucket. I've gotten pretty good at vomiting outside of moving cars though. I don't feel safe driving because I might get sick while I'm driving.
I need to find a primary care doctor closer to my house as well. I feel bad just walking in and saying, "Hey, I've got gastroparesis and I'm your new patient!" I would like all of my records in one place, though. My knee records, my stomach records, my records from my old primary care doctor. I feel as though my medical records are scattered all across Atlanta.
I have to say that it was good to leave the house for a little bit. I've been confined here since March since my GP has been so severe. I slept on the car ride back because the nausea started to hit. Then, I went to bed and didn't wake up until about 10pm or so. This new medication knocks me out.
The medicine that helps the most is the muscle relaxer. It relaxes my stomach enough for me to eat and not be in as much pain.I don't know if they'll keep me on it or not but it's the only thing that seems to help.
Maybe one day this Summer, I will get to go to the beach! I miss the salty smell of the air... there's nothing quite like it. I'm leaving Wednesday or Thursday for a car ride up to Connecticut for convention for my fraternity with my friends. I hope that I can make it up there with no problems. I'm more worried about the car ride. If I don't eat while at convention, I won't be sick. I know that sounds absolutely horrible. I didn't each much before or after the wedding, so I didn't get sick like normal. So, I'm going to have to monitor myself very closely with food. Most of the time, I'm not hungry anyway. But, social conventions seem to be centered around food and drinking. I can't do either.
I just took:
1 pain pill
2 anti-spasmotic pills
1 anxiety pill
1 muscle relaxer
2 anti-nausea pills
Between all of those, and I hope I can keep those down, hopefully I'll go back to sleep. I just hate waking up with that immediate need to be sick. And, as per usual, I whacked my knee on the side of the toilet again.
I just want to feel better. I'm going to call and make an appointment with the motility specialist. She's at Crawford Long, so that's a bit closer to me to get to. When I do drive, I have to drive around with a bucket. I've gotten pretty good at vomiting outside of moving cars though. I don't feel safe driving because I might get sick while I'm driving.
I need to find a primary care doctor closer to my house as well. I feel bad just walking in and saying, "Hey, I've got gastroparesis and I'm your new patient!" I would like all of my records in one place, though. My knee records, my stomach records, my records from my old primary care doctor. I feel as though my medical records are scattered all across Atlanta.
I have to say that it was good to leave the house for a little bit. I've been confined here since March since my GP has been so severe. I slept on the car ride back because the nausea started to hit. Then, I went to bed and didn't wake up until about 10pm or so. This new medication knocks me out.
The medicine that helps the most is the muscle relaxer. It relaxes my stomach enough for me to eat and not be in as much pain.I don't know if they'll keep me on it or not but it's the only thing that seems to help.
Maybe one day this Summer, I will get to go to the beach! I miss the salty smell of the air... there's nothing quite like it. I'm leaving Wednesday or Thursday for a car ride up to Connecticut for convention for my fraternity with my friends. I hope that I can make it up there with no problems. I'm more worried about the car ride. If I don't eat while at convention, I won't be sick. I know that sounds absolutely horrible. I didn't each much before or after the wedding, so I didn't get sick like normal. So, I'm going to have to monitor myself very closely with food. Most of the time, I'm not hungry anyway. But, social conventions seem to be centered around food and drinking. I can't do either.
Saturday, June 16, 2012
The Wedding
Somehow, I made it through the wedding without being sick. I only ate a small amount, so that probably helped. However, the little I did eat, is causing some pretty intense stomach pain. It burns horribly and feels like I've been punched. But, that's not new.
The wedding was amazing! I even managed to get up and do the electric slide with friends. I haven't been able to dance in a while, so that made me extremely happy.
Right now, I'm trying to ignore the pain in my stomach. I am bloated and crampy. I just took my anti-spasmodic medication in hopes that it helps. I feel extremely tired and fatigued. I haven't eaten too much today but I've been trying to drink lots of water. I really could lay down and go to sleep, if my stomach would let me.
But, I have to be social for a few more hours. That's not a bad thing, but I just need my stomach to cooperate. At least I didn't throw up at the reception or during the wedding.
I'm still miserably hungry but I don't want to make myself even more ill. My medication needs to kick in first, before I can do anything. My stomach medicine also makes me sleepy. Well, one step at a time, I guess.
The picture below is of us after the wedding. I'm in the purple.
The wedding was amazing! I even managed to get up and do the electric slide with friends. I haven't been able to dance in a while, so that made me extremely happy.
Right now, I'm trying to ignore the pain in my stomach. I am bloated and crampy. I just took my anti-spasmodic medication in hopes that it helps. I feel extremely tired and fatigued. I haven't eaten too much today but I've been trying to drink lots of water. I really could lay down and go to sleep, if my stomach would let me.
But, I have to be social for a few more hours. That's not a bad thing, but I just need my stomach to cooperate. At least I didn't throw up at the reception or during the wedding.
I'm still miserably hungry but I don't want to make myself even more ill. My medication needs to kick in first, before I can do anything. My stomach medicine also makes me sleepy. Well, one step at a time, I guess.
The picture below is of us after the wedding. I'm in the purple.
Monday, June 11, 2012
Frustrations
Well, I woke up with pink eye - or some kind of eye infection. I haven't thought to change my contacts because I've been so worried about the nausea, vomiting, and pain. I guess this will teach me to ignore my eyes!
I just want to vent my frustrations. I think my friends are frustrated with me because there's nothing they can do to help me and this illness makes me a bit flaky. I'm at the mercy of my stomach and I have good days and bad. Today is a bad day, as was yesterday. I really can't predict how my stomach will act on a given day. I can't leave my house because I need to be near a bathroom and vomiting in public is not my idea of fun. It's not that I don't want to go out and do things, I would love to! I wish that I wasn't at the mercy of my stomach. It sucks when your major organs decide to fail you.
All I can ask is for some understanding and patience - and I know that's asking a lot. Trust me, I'm just as frustrated as you are, if not more. I like being a social butterfly! I really, really do! I was hoping to have the Summer to kind of recouporate and figure out a good way for me to manage the gastroparesis.
I really am doing my best to make it to meetings,advisement, and other things this semester. I feel like everyone's had a vacation but me - because I'm constantly dealing with this stomach issue. I feel like if I can't make something, people get really mad at me. But if they miss something, it's not a big deal. I just want to know what it's such a double standard? Don't I deserve a break too? This is why I didn't run for any officer positions in clubs this year because I can't physically handle it right now. I need to step back and let other people run things so that I can work on myself. Believe me, that's hard for me to do but I can't help it at this point. I need to heal and to find a medication that works for me and I need for my friends to be patient with me a little longer. <3
I just want to vent my frustrations. I think my friends are frustrated with me because there's nothing they can do to help me and this illness makes me a bit flaky. I'm at the mercy of my stomach and I have good days and bad. Today is a bad day, as was yesterday. I really can't predict how my stomach will act on a given day. I can't leave my house because I need to be near a bathroom and vomiting in public is not my idea of fun. It's not that I don't want to go out and do things, I would love to! I wish that I wasn't at the mercy of my stomach. It sucks when your major organs decide to fail you.
All I can ask is for some understanding and patience - and I know that's asking a lot. Trust me, I'm just as frustrated as you are, if not more. I like being a social butterfly! I really, really do! I was hoping to have the Summer to kind of recouporate and figure out a good way for me to manage the gastroparesis.
I really am doing my best to make it to meetings,advisement, and other things this semester. I feel like everyone's had a vacation but me - because I'm constantly dealing with this stomach issue. I feel like if I can't make something, people get really mad at me. But if they miss something, it's not a big deal. I just want to know what it's such a double standard? Don't I deserve a break too? This is why I didn't run for any officer positions in clubs this year because I can't physically handle it right now. I need to step back and let other people run things so that I can work on myself. Believe me, that's hard for me to do but I can't help it at this point. I need to heal and to find a medication that works for me and I need for my friends to be patient with me a little longer. <3
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