Often when I am contacted by someone to help with cyclic vomiting syndrome, it’s not the patient, but a caretaker of someone suffering that I am communicating with. My husband used to do extensive research into what was wrong with me, during the times that I was down. Through this, we learned much more about the illness, and how to care for it when it’s flared up. I thought it would be helpful to put these into a list to share with my CVS community.
1. Keep bedside table clear
Inevitably, the bedside table can quickly become crowded with anti-nausea meds, glasses of water, and other items meant to help us in our down time. My husband is always good about switching out my water glasses when the ice has melted and throwing away wrappers of medicines that I might have opened.
2. Throw away sick bags
One of the grossest, but most helpful thing that a caretaker can do is help us change out our sick bags. This is why I like to use the EME-Bags so much, because they make for easy cleanup to just be thrown away. My husband always gets several handfuls of these when I’ve been in the hospital to be rehydrated.
3. Help maintain normal schedule for the household
I always have this feeling of guilt that comes over me when I get sick, because I know I won’t be there to help with keeping a regular schedule for my family. One of the best things my husband does is keep the wheels moving on our very busy lives, getting our daughter to rehearsals, fixing meals, and doing chores. This helps to keep things more normal when I’m absent and sick, and makes it easier on me when I’m recovering to not feel overwhelmed in doing things to catch up.
4. Draw a hot bath
Taking a hot bath, as hot as you can stand, seems to help during an episode, for whatever reason. Most CVSers figure it out, almost intuitively, but one of the best things a caretaker can do is draw a bath and get things ready, such as a towel, new nightshirt, and possibly making the lights more dim in the bathroom. I’ve been known to sleep in the bath, only waking to redraw the water when it’s cold. I wouldn’t advise doing this, though. It’s a wonder I didn’t drown.
5. Rub our back
It’s comforting to have a back rub and it seems to ease my nausea when I’m not feeling well.
6. Keep prescriptions filled and picked up
Making sure we keep our prescriptions, especially nausea ones, filled and ready to take again once we are feeling good, is a huge help.
7. Be our advocate in doctor’s appointments
Looking back as I was beginning to figure out what was wrong with me, I often had doctors talking to me about going to see a psychologist or doing possible surgeries. Now we know that neither of these things or the other crazy things my doctors put me through were actually what I needed as a CVS patient. Just having someone who believes in this invisible illness and can be there as a voice for what we need is huge.
8. Research and try to find connections
Because our condition is so rare, there isn’t extensive information or studies out there about it. Any research or connections that can be put together, the better. Sharing experiences and information with each other is a great way to develop a possible connection to curing this condition.
9. Make us food when we do come out of it
It usually takes me two or three days after the episode has passed to finally be able to eat. I can usually start drinking sooner, but when I do come out of it, still weak from being sick, having a meal prepared is a huge help to recovering. I’m not a natural in the kitchen, by any means, so my husband often prepares ahead things I’ll want when I come out of it. My go to foods: chicken noodle soup, crackers, popsicles (Bomb pops, yum!), peaches, mandarin oranges.
10. Pray for us
Whether you’re a believer or not, having folks pray for us or send us good energy or just wish us well is a positive thing. Having this condition is one of the most difficult things about our lives. Each of us feel robbed of time that could otherwise be spent healthily and happily doing things we enjoy. It leaves us in a position of hopelessness, and I almost always feel like I’m dying, so having those who are hopeful around you is a good thing.
What suggestions do you have as a caretaker or CVS patient? What advice would you give? Leave your thoughts in the comments to help each other.
Read more of my blog posts on CVS here: