Purple Day and Pandemic 2020

It is scary living with a chronic, uncontrolled illness on a normal day. With the emergence of COVID-19 (coronavirus), it is easy to feel incapacitated.

The need to put your health care first, especially when you have loved ones that need care also, can be difficult. This conundrum has put me in a tough situation. 

The smart doctors and scientists of the world are recommending physical (previously called social) distancing, and to self-isolate if you have symptoms. I don’t have symptoms – yet. And I am not kidding myself by thinking I will not get sick from this.

They are estimating 50% of people will get COVID-19. If I look at my household, between my husband and I… I will be the one to get sick. 

However, I think the best thing I could do right now is to stay at home, isolate myself for at least the next two weeks, and wait to see how the world is then, to make a plan moving forward. Seems really safe, right? 

Not actually. 

My husband still is going to work, as he works an essential job and is at low risk of infection. Because he is my main caretaker, he is the one having to go get my medications, and the household supplies. That puts him out there.

That means he is at a higher risk of contracting the virus, period. Then he comes home to me. We have a “decontamination room” at the back of the house where he strips down and sanitizes. That can only do so much. 

Regardless, he has still been exposed and therefore is exposing me to the virus just by being in the house. Not to mention our wanting to snog transfers all viruses and cooties. 

So where do we draw the line? Where do we find the comfort of “I’m doing everything I can” and keep the practicality of “I still have to live my life.” 

Maybe just holding on to the hope that the majority of the world is also practicing social distancing and washing their hands frequently and effectively, is all that we have right now.

Please, consider sending a text, a tweet, a DM, or video call to the people in your life that you know are supporting people in the high risk group. Thank them for helping reduce the curve. And a big thanks to you, if you are that person.

It is fortunate that I have a job that I can do – fairly well – from home. But it puts a burden on my fellow staff to pick up the slack on all the physical work that I’m no longer there to do.

I am ashamed telling my boss that I have to stay home; because I’m too scared of dying of SUDEP because the strain that getting sick puts on my uncontrolled brain. I need to thank them more, for holding the front lines, and being so understanding.

I want to thank my friends, my in-laws, and my parents, for not taking it personally when I tell them I can’t physically be with them for the unforeseeable future. I appreciate and love all of them.

I hope you feel that kind of support from the people in your life. 

Who do you appreciate the most right now? What do you find most difficult in these troubling times? Share with us in the comments.

Hello World!

This is my first post so bear with me!

Nice to see you here! My name is Sāb (like babe but with an S). I have epilepsy with unusual seizure activity. It is uncontrolled and medication resistant.

Why did I tell you this, before anything else about me?

  • Because I thought it defined me.
  • Because I used to keep it a secret, thinking it was something to be ashamed about.

But that is a thing of the past! I now realize that although epilepsy has a big impact on my life, I have no reason to hide or be apologetic. It was a long journey to get here, and my adventure is not over.

I think it is important to recognize that it is an amazing feat, and I would love to share my experiences with you. My lessons learned, my “should’a, would’a, could’a’s” and future endeavors are the types of things I hope to publish.

Maybe you or a loved one have epilepsy, or some other chronic illness. You may find something of value hidden in my pages. I sure hope so.

I must admit, I have hoped to find some comfort out here in the infinite internet. If you have too, and you landed here, maybe there is a reason. I would love to connect.

So who am I really?

  • My educational background is in engineering
  • I have a wonderful and supportive family
  • I love to ice skate
  • My favorite place in the United States is the White Mountains in New Hampshire
  • I am looking into going back to school (for a mid-life career change)

Okay, those are just facts, not really allowing you to know the “real” me. I suppose that if you would like to get to know me, you can read my blog. Shoot, you can even contact me, and we can build a real friendship!

Regardless, I am hoping that you are willing to take this wild ride called life with me.

Stay tuned for the next episode (yes that was a seizure joke).