So much to learn about...epilepsy

In Canada, March is Epilepsy Awareness month and Purple Day (the colour that represents epilepsy) is March 26^th. Since I have epilepsy (at least two of 40+ kinds), I want to do what I can to help raise that awareness.  

In 2024, I wrote a blog post about epilepsy that included some facts and figures about epilepsy, a bulleted list about my own experiences, including its impact on me during my breast cancer treatments. I don’t want to repeat myself, since I do that too much in conversation. Instead, check out my first blog post, Getting real about epilepsy and cancer.

My general health

While not a bucket list, since collecting ailments is not something you want to do, I feel like I must have some kind of checklist and I am checking off too many boxes. Here’s my current list and I’m hoping there’s no more checkboxes in my future.  

• Epilepsy, multiple kinds (check+)

• Breast cancer survivor with residual impacts:

o   Scanxiety – fear of recurrence after every scan to make sure my cancer has not returned (check)

o   Lymphedema – swollen legs from poor circulation of lymph after breast cancer surgery (check)

o   Chemo brain – inability or struggle to remember some things (check)

• High blood pressure (check)

• Rheumatoid arthritis (check)

• Type 2 diabetes (check)

Although, I must admit, I got to check off two boxes in one doctor’s visit. Not exactly the kind of twofer that most people want.

Side effects

Between the ailments themselves and the treatments to minimize the symptoms, side effects add their own twist.  

Sleep and fatigue

While I have always been able to fall asleep anywhere at any time (even standing up), it feels like it is more frequent. If I am at work and in a meeting where I am not actively participating, I can fall asleep. I wake up when my head falls forward and my headset falls off and hits the keyboard. The sound wakes me up. Sometimes I wake up and everyone has left the meeting. And people wonder why I don’t turn my camera on for meetings.

While the meeting may have been recorded, I can’t stay awake long enough to finish the recording. I have come up with a workaround that involves the meeting transcript and doing some screen captures to create detailed notes.

Outside of work, when I sit in a chair watching TV, I can fall asleep, wake up long enough to think I should go to bed, only to fall asleep again before I can get out of the chair. If you think that’s crazy, I repeat this process many times.

When I make it to bed, sometimes I don’t even remember my head hitting the pillow. I fall asleep instantly and panic if I go 5 or 10 minutes without falling asleep. When I tell others, they tell me that it must be nice…with a disgusted tone.  If I could bottle and sell it, I wouldn’t have to worry about money ever again.

I know. This is not normal, well at least not to you. I haven’t talked to my doctor about it. It has been happening for a long time, and it doesn’t seem to be getting worse.

Memory

While my mind is still working, and I am grateful for that, my short-term memory is sliding. I go to search for something on the internet and learn all kinds of new things and forget (for minutes or even hours) why I went to the internet in the first place. I have to open it and rush to key in my search criteria right away before I forget it again.

I walk into a room and that’s all I know. It’s like I walked into the room, and my thoughts left the room. I start and stop sentences as frequently as I inhale. I forget words. I struggled with living room the other day. I ended up saying, “You know. The room where the couch is.”

People think I talk too much and don’t let other people speak. I could just be rude, but it could also be that I have so much I want to say and I need to say it before I forget again what I was going to say.

Yes, this could be yet another thing to mention to my doctor. It has the potential to become another list item.

Possible causes

My high-blood pressure could be part of the problem because the blood flow to parts of my body, including my brain, is not good. I have had chemotherapy, which can be a mind-blowing experience that results in chemo brain (crippling of short-term memory). You could say that my epilepsy is all in my head. Well, sometimes it’s also in my body when I have a tonic-clonic seizure, the ones you see on television. Regardless of the seizure type, a seizure is a seizure and can impact your memory.

My rheumatoid arthritis and diabetes are relatively new to me, but I’m sure they play a role. With autoimmune components and impacts to the heart and blood flow, I’m sure they are contributors. And then there is age. As I write this post, my 65^th birthday is just around the corner and so is my retirement. When I was considering if I should retire, people told me that I should retire while I was still in good health. Well, that shipped sailed long ago.

And then there are the medications. Both my epilepsy and arthritis medications can cause fatigue and sleepiness. Luckily, there is only one day when the two overlap.  

As for the ailments themselves, I could remove some of the items currently on my list with some lifestyle changes, including exercise. Hopefully, with retirement, I won’t be sitting at a desk all day. I will go for walks and will have to pick up the pace if I want to keep up with my grandson.

People first...seizures second

But it’s not all doom and gloom. While I have a long list of ailments, I have an even longer list of achievements. That’s not to brag. It’s to highlight that sometimes we hold ourselves back from reaching our full potential. In some cases, because people don’t understand epilepsy, they assume that something that affects your brain also affects your intelligence. Nothing could be further from the truth.

Unfortunately, of all the ailments on my list, only epilepsy has a stigma associated with it.

I understand that a seizure can be scary and strange. It makes it difficult to watch. Now imagine what it is like for the people who have seizures.

There are the looks from people after a seizure. There’s the embarrassment of knowing what you looked like as you had your seizure. There is also a feeling of failure. You always hope that each seizure is your last one until it happens again. Some people count the number of days that they are seizure free and feel crushed when they have to start their count over again.

Many people, past and present, have been successful, despite their epilepsy. Let’s make removing the stigma a success.  Learn more about epilepsy. Learn what to do. It’s the fear of the unknown that keeps the stigma in place. 

Remember, there are more opportunities to learn in my first blog post,

Getting real about epilepsy and cancer.

Get the facts. Check it out!

Wear purple on March 26^th. Show your awareness and support.