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The CVS Bucket Photo Challenge

In the run up to Cyclic Vomiting Syndrome Awareness day we're doing a challenge.

The challenge will be to get as many people as you can to be pictured with a bucket. They can do anything with their bucket. They could do something funny with it, wear it, decorate it, snap a friend, Nurse, Dr or school teacher with it, anything they like. So long as they picture it.

Awareness Day 5th March

We're asking people to make a small donation to the Cyclic Vomiting Syndrome Association too if possible to assist with awareness and research funding.

Our New CVS Pinterest Account

The CVS Network Pinterest Account can be found HERE

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Cyclic Vomiting Syndrome Awareness

Photos of Buckets for CVS Awareness Day 2016

Hello guys and girls,

We are hosting an awareness drive in which we will be asking people to take pictures of buckets.

We need name ideas for the photos with buckets challenge. The challenge will be part of CVS Awareness day on 5th March. We are hoping to get as many people from all around the world involved. 

If you are able to help me promote this event please let me know.

You can do anything you like with your bucket in the photos. You could do something funny with them, wear them, decorate them, snap a friend with them anything you like. We will be posting them in the run up to awareness day so we need a good catchy name for the challenge. I will then design some posters to promote the challenge which you can share all over the place to get others involved IE: schools, shops, churches, workplaces, friends & family etc. I hope you'll all join in and have a bit of fun in the process. 

Just submit your name ideas in the comments section below, this will run for 2 weeks and on 16th Dec we will narrow them down to about 6-8 names. After we narrow them down we can start a vote on the groups, pages and websites in order to decide the final name.

Other places name ideas are being posted are...

CVS Facebook Page

CVS Facebook Posters Page

CVS Facebook Group

Cyclic Vomiting Twitter

**PLEASE ADD YOUR NAME IDEAS IN THE COMMENTS SECTION BELOW**

15 things not to say to someone with a chronic illness or invisible illness

This was not written by me but is from the A Sweet Life Website 15 things not to say to someone with a chronic illness or invisible illness

Invisible illnesses are illnesses that you can’t see just by looking at someone. Things like Type 1 diabetes, Chronic Migraines, Lupus, Postural Orthostatic Tachycardia Syndrome, Fibromyalgia and Cyclic Vomiting Syndrome.  These may not affect your appearance, but they affect how your body functions and feels. Every day. Probably for the rest of your life.

When you say the following things to someone with a chronic illness, you probably don’t mean to hurt their feelings. A lot of the time you are just trying to understand or sympathise. Well, from the perspective of someone who lives with a chronic illness, here are 15 things you should never say to someone with a chronic illness:

1. You don’t look sick

Not everyone “looks like” what is happening to them. You would never say “you don’t look like someone who is going through a terrible divorce” if your stressed out friends still manage to put on a brave face and pull themselves together. Not all illnesses are manifested outwardly. 

  

 

 

2. You’re too young to be sick

I get this one more than #1. You can get ill or go through any kind of stressful situation no matter your age. Age is completely irrelevant here. Young, unfortunately, does not always equal disease-free. When you tell someone they’re too young to be sick, it just makes them feel even more guilty or embarrassed for having an illness they have no control over when society expects them to be healthy.  And, moreover, just because you have an illness, doesn’t mean you want to be called “sick.”

3. Everyone gets tired

That may be true. And most people are not getting enough sleep and rest. But the difference between someone with chronic illness associated fatigue and an otherwise healthy person is the level of fatigue. If I go out drinking with friends and stay up late, it could take me a week to recover. I have to carefully plan every activity of the day so that I can save energy to do all of them. The best line I’ve heard for this one is: you don’t know what fatigue is until you’ve had to rest after taking a shower. Unless you literally think to yourself“how much energy will that take?” for every single action you take during the day (including brushing teeth, combing hair, standing to do dishes, putting on makeup, cleaning, driving, etc.) then you experience a completely different kind of tired than people with certain chronic illnesses. I’m not saying you aren’t tired. Everyone does get tired. But my kind of tired is not the same as a healthy person’s kind of tired. If I push myself past the amount of energy I have in a given day, the consequences are pretty bad. See the spoon theory for more about this one.

 

4. You’re just having a bad day

I know you are trying to motivate someone and make them feel better when you say this, but it doesn’t come off like that. Personally, only about 10 people in my life see me on my bad days. If I am outside, dressed, and active, that is a good day. So instead of making someone with a chronic illness feel supported and motivated when you say this, it feels like you are brushing off their symptoms. Chronic illnesses are with you for life. You can change your lifestyle and find treatments to help them, and some of them can be “managed,” but for the most part, that person will have to deal with a lot of bad days for many years to come.

5. It must be nice not having to go to work/school

This one. Oh man. If you only knew. Sure, it can feel that way when you take a day to play hooky or a long vacation. But when you are forced not to go to work or school, even when you want to be there, it is a different story. People with chronic illnesses don’t want to fall behind in school and fight with the school district to get the accommodations they need. People with chronic illnesses don’t want to miss work and not be able to generate an income. Everyone wants independence.

Personally, I loved school and hated every day I wasn’t there. It is way more stressful not being in school and knowing all the work you will have to do to make up for it than being there on any given day. And I have loved the jobs I’ve had and been sad about every day I have missed. Believe me, it is not nice having to stay home instead of being productive, just trying to find ways to distract yourself from pain or exhaustion. It’s fun to watch TV for a day or two, but after that, I feel trapped. I guarantee anyone with a chronic illness would gladly trade in their symptoms for a full time job.

6. You need to get more exercise

Exercise is really important and no one is denying that. It helps pretty much any health condition. But it isn’t a cure-all. For someone like me, whose heart rate regularly reaches 120 bpm just from standing still, exercise isn’t always doable. I do “exercise” but it is more like physical therapy exercises than what most people would consider a good work out. But remember, everyone has limitations. For people with chronic illnesses, their physical limitations may make it harder for them to do traditional exercises. And even if they do, it will probably not be a cure for a condition that is caused by something totally different like an immune system that attacks itself or a nervous system that doesn’t regulate itself correctly.

 

7. I wish I had time to take a nap

See numbers 3 and 5, which relate to this one. To someone with a chronic illness, to whom napping is not a luxury but in fact a necessity, hearing someone say this is as much a slap in the face as hearing someone say they wish they could take a break from work or school too. Hearing anyone “wish” they could have a part of a chronic illness just shows how misinformed they are when they say this. Wishing you had more time is pretty much a universal wish. But wishing you had the time that a person with a chronic illness has is not the same. If your wish is granted, you can get more time, but you also have to get the pain, the exhaustion, and the difficulty figuring out how to be productive in society. Remember that next time you have the desire to say this.

What it's like to live with CVS

Some posters to describe what it's like to live with CVS

#CyclicVomitingSyndrome