Ice Bucket Challenge

By now, you most likely have heard about the ALS ice bucket challenge, and many of you have probably also participated in it. I have very mixed feelings on this. 

Because I suffer from chronic illness myself, I understand the huge importance of donations as well as awareness. Part of me wishes someone would have thought of this for Myasthenia Gravis or for POTS. 

The other part of me wonders, how many people who pour a bucket of ice water over their head are donating? How many are researching to learn about ALS? Are people doing the challenge because they want to help those suffering this horrible disease, or are they doing it to post a video of themselves to facebook? Is it really making a difference or is it another one of those things that will be forgotten about as a trend that comes in and fades out? I read that donations are way up, but I also read that a HUGE percentage of those donations do not benefit ALS patients as sadly happens with many organizations. 

Please, if you want to donate to ALS, or any organization for that matter, do it! If you have the financial ability to give and the heart to do so, I absolutely encourage it. But I also encourage researching that disease, that organization, and maybe even getting to know some people who have it. Make it personal. Allow it to touch your life.

I will not be participating in the ice bucket challenge not only for the reasons stated above, but because it is dangerous for me. Specifically with POTS, our bodies don't typically regulate temperature well, and we are very sensitive to changes including temperature. I hope no one who does this challenge ends up sick or hospitalized because of doing it. I will not put my own health at risk, but I will donate to organizations that I feel called to donate to. 

Today I saw a post on facebook from a fellow POTSie who bravely did the challenge, but with her own twist to it. She used this as an opportunity to educate people, and she now has over 1000 views. That is something that makes a difference. Donating is great, but educating yourself on what your friend or family member is suffering from sometimes can be even better. After all, we all- each and every human being on this earth, need support. Learning leads to understanding which can lead to support. 

I encourage you to watch this in full. Please be warned she passes out and has a small seizure towards the end. These are only two of the many symptoms/things that can happen to POTS patients. Each POTS patient is different, as is also the case for each MG patient, and probably a majority of other chronic illnesses out there. We can never walk in another's shoes but we can become aware, educated, understanding and supportive. 

I now make my call out to each one of you... go ahead and pour a bucket of ice water over your head if you feel you can safely do so and are compelled to. But more importantly, donate to ALS, to Dysautonomia International, to the Myasthenia Gravis Foundation of America, or to another organization of your choice. And next, spread awareness. Today I ask that you spread awareness of POTS, a chronic illness I suffer from, by sharing this video and/or this blog. 

Thank you for reading and thank you to Ruth for allowing this to be shared.