Having cyclic vomiting syndrome means that it’s not a matter of if, but when you’re going to have your next episode. This means that using the time that you are feeling well is super important for making sure things go as smoothly as possible when you are down with a spell. Here’s a list of ten things that I always try to do when I’m in the phase of the illness that allows me to be on my feet:
1. Get Life Back in Order
Everyone’s episodes seem to last a different amount of time. When I get sick, on average I am down at least 9-11 days at a time. This is 9-11 days of dry heaving, sometimes inability to speak, and certainly unable to function normally. Often this leaves me feeling behind in my work, behind in housework, and behind in my health overall.
Using the time that you’re well to first recover, then get into a routine has really helped me. I use Sunday evenings before the week begins to do things like plan out my week in a planner. I mark each of my meetings and where they are in my planner to make sure that I’m not planning too many next to each other in case I get sick. At the moment, I’m having a difficult time eating, even when I’m in my well phase. I might leave an hour after a lunch meeting to go home and get in the shower for 30 minutes, so that I can get through the rest of my work day without falling into sickness.
Part of my routine is working to keep up with my house so that even if I do go down, it’s already kept up on so it’s not so bad when I get back to it. Included in my plan for the week is a chore on each day. This is to break down the work, so that I don’t feel like I have to spend my weekends cleaning, and so that it doesn’t overwhelm me.
Here’s my list of chores for each day:
• Monday – Empty all trashcans and take to the curb
• Tuesday – Kitchen
• Wednesday – Grocery Store
• Thursday – Floors
• Friday – Bathrooms
• Saturday – Bedsheets/Laundry
• Sunday – Prepare for Week: Pick out clothes, write out plan for week, schedule social media posts
My favorite planner is Tools 4 Wisdom, which you can find on Amazon.
Eating is one of the most difficult things about my life. Not only is it hard for me to eat, because I always feel cruddy after, but it feels like everything is associated with food, making it that much harder. Everyone wants to meet for lunch, or business is centered around a luncheon or dinner of some kind. Eating together is one of those pleasant things that brings people to a table and builds relationships. I get it, it’s an important part of our society and how we function, but for someone with a sickness like this, it can be trying.
That’s why when I am feeling well enough to eat, I do! And I am even taking medicine that helps me in gaining weight, because when an episode hits, I will often lose ten pounds or more by the time that it is over. This is why harvesting calories like a squirrel does before the winter is key for me in surviving the spell. At one point in time I fell below 90 pounds, looking like my husband described as a “Holocaust victim.” It scared me and I haven’t minded having a few extra pounds on me for when it happens again ever since.
Also, I feed my body whatever it craves and trusts that it knows best. That’s why when I get lectured about not eating salsa, something spicy, stuff that’s acidic, or get asked to try any one of those diet crazes I just nod my head and smile, then go do whatever I was going to do anyway. Because I know that it’s not about what we eat that causes us to get sick, it’s more an attack on our central nervous system that is the problem. Sometimes just the sensation of eating will cause us to trigger and go into a spell. So eating what you can, when you can, is important for being ready when you do go down again.
Things I like to eat when coming out of a spell to ease back:
• Fruit: peaches, pears, applesauce
• Rice: rice with butter but not any hard grains, because they’re hard to digest
• Dairy: yogurt, pudding, sherbet, milkshakes
• Chicken noodle soup broth
• Weird things I always like: KFC Cole Slaw, Fruit Rollups, Skittles
I try to keep a journal of each of my episodes to look back on. This has been important for a number of reasons. Not only have I been able to get a better grasp on patterns that occur around my episodes, but I have it to share with my doctor more easily than explaining it twenty times over, like hospitals/doctors often have you do.
Amazingly enough, Facebook Memories has helped me a lot in identifying trends with my illness. For instance, by using the “On This Day” feature, I found that I had been sick multiple times in years past at the exact same time. If nothing else, maybe that can help me to keep better care of myself and not travel during the times that I might be more susceptible of being sick. I certainly can avoid planning events and things that might bring stress during those times.
Here’s a list of what I track:
• Length of each spell (which is how I know my average downtime)
• What I might have been doing that day
• If I have a lot going on at the time
• Medicine that I am taking and if there were any interruptions in taking it
• Any other thoughts that should be noted, no matter how weird they might sound
I might start doing a daily health journal that includes how I felt that day overall, if there were any health mishaps to note, what I ate that day, bowel movement irregularities (gross, I know), and medicine that I took. Maybe then I could start to find better trends in my episodes.
4. Work Ahead
We are all busy people and many of us who are suffering from this illness are trying to hold down jobs and keep our families functioning at the same time. That’s why working ahead as much as possible is extremely important for staying successful while feeing down. Whenever I can at work, I try to plan my months ahead. As a director for an educational foundation and grant writer, I am placed with a number of different deadlines that I am forced to keep for the sake of my business.
Here’s a list of things I try to do to keep up at work:
• Plan ahead – Monthly calendars include all deadlines and goals for what I want to accomplish that month
• Work ahead – Don’t procrastinate on projects and move them off your plate as soon as you get them, if possible
• Communicate – Keep colleagues aware when you’re having down times, so they can help keep things moving
• Backups – If I’m scheduled to speak, I might have a back up plan/speaker, in case I get sick unexpectedly
• Work efficiently – When I’m there, I don’t mess around, I stay focused on the job and use my time as efficiently as possible.
5. Visit the Doctor
Each time I have an episode I go and visit my gastroenterologist specialist to review the spell. Not only does this help me in getting my journal in order before going to visit, but also allows the doctor to see better what I’m dealing with. It’s at that point in time that you can determine if there need to be any adjustments made to your medicine or if maybe something you were doing at the time may have triggered the episode, providing insight for your doctor in some way.
Inevitably, no matter how much I try to go without a trip to the hospital to be rehydrated during a spell, I almost always end up there. This means that medical bills can quickly start to catch up with you if you’re sick for any extended period of time. At one point, I was having spells every month and a half (like clockwork), forcing our medical debt to go higher and higher.
I’m lucky enough to have a hands-on husband who takes care of this for our household, so he usually contacts the hospital and finds out what types of payment plan he can set up for us, so we are able to pay it down without any kind of penalty. Also, setting up automatic bill pay would be a great way for you to keep up with your bills, even if you’re down with an episode.
Me in the hospital a few years ago. Try to keep your sense of humor!
After a spell, my nausea medicines are usually low. This is when I stock up on things like Zofran, Pepto Bismol, Dramamine, and making sure my migraine medicine is filled. Getting everything back into the house for when the next round comes is key so you’re not waiting on it when you need it most.
8. Med Bags
Obviously with this illness you throw up a lot. My episodes always force me to throw up every 15 minutes, whether I have anything in me or not. Even if you don’t have anything in your stomach to get sick, your stomach creates bile, which you will throw up. I would either be back and forth between the bathroom or probably sleeping on the floor if I were to try and use the toilet each time I threw up. This is why we either use an old, plastic ice cream bucket that my amazing husband washes out for me over and over again, or med bags from the hospital.
Here’s a trick that my wonderful husband figured out that has helped us out a lot. When/if you go to the hospital during a spell, before you leave, grab a handful of those med-bags that patients get sick in. They’re perfect for using during an episode, and are rather expensive if you go to order them online. If you just grab what you’ll need for the next spell while you’re at the hospital the time before, then you’re set for the next one.
I know that many who have this illness don’t talk about it with their employer at all, in fear that they might be let go. Fortunately, I don’t feel that threat from my employer, and have always felt like I’ve had the support that I need. That is why I do my best to keep my employer in the know about what is going on with my illness. I try not to go into any long amount of detail (simply to spare them the disgust of it all), but certainly let them know if I’m not feeling well that day, or can sense that I might get sick sometime soon, or let them know if I feel I need to leave early. I believe having open lines of communication regarding your chronic illness with your employer gives them what they need to continue the business/organization as successfully as possible. I feel it’s my responsibility to them as their employee.
Certainly spending time with your family and friends is the most important, despite being listed last on this list. Using the time that you are well to enjoy events together, go on vacations (if able), attend church, and catch up with your friends is key for maintaining your relationships. There have been times in the past that I have had to miss special school events for my daughter or going to a Royals game with my family. That’s why cherishing those moments you can spend together when you’re well is that much more important.
My husband with his arm around where I should be during his parents 50th Wedding Anniversary.
Our family on a successful vacation to Florida for Walt Disney World
I hope this list might help those who are suffering from cyclic vomiting syndrome in some way in preparing for their next bout of illness. If you are interested in reading more of my posts regarding this disease, click here to see my experience and struggle in fighting it.
Please share with me your experiences, leaving any tips you do to prepare in the comments below, and if you have any questions. We are all in this together and can help one another to get through. Feel free to connect with me on Facebook, Twitter, Instagram, Tumblr, Pinterest, or Google+. Also, I have a cyclic vomiting syndrome board on Pinterest that might be of interest to you, click here.