‘Always’ ‘Tired’. That’s a tattoo the artist, Post Malone recently added to his ever increasing collection of tattoos. Although it didn’t mean anything to him and he did it on a whim, the first thought that came to my mind was “hey I should get a tattoo like that, it would be funny”; only because I related to it so much. [Disclaimer: Joking about my disorder keeps me sane and helps me not take it so seriously 🙂 ].
People that have epilepsy or a seizure disorder tend to show more signs of fatigue than those who do not have epilepsy or a seizure disorder.1 I remember the time when my then 3 year old said “I am so tired” with a sigh; I had mixed emotions about it. On the one hand, I felt happy to know that she was able to express how she felt appropriately at that age, but on the other hand, I was sad that she had learned what it meant at such an early age. It also made me realize that I probably say it so often, it had become part of her vocabulary.
Mommy on my own
There was another time when my husband took a much needed boys trip for a few days and I had to manage a toddler and run the house by myself. Now this might be just normal life for some people, but for me it is a bit of a challenge, especially since I am not in that situation often. Those of you who have kids will understand the perils of this and for those that are single parents, I salute you! After a few days of being on my own with my toddler, I unconsciously blurted out “Oh I am so tired,” to which the little monster disappointedly said, “But Daddy never gets tired Mama.”
As she said this, I could feel the tears just welling up in my eyes; for so many reasons. I felt sad that I have epilepsy and got tired so quickly, I felt sad that my daughter had to feel that way and I felt like I had failed her as a parent. But like various other situations, I held myself together and said “Yes I know love but Dada doesn’t have epilepsy and I do, so I get more tired.” She understood what that meant, as much as a 4 year old can anyway. I do talk to her quite regularly about the fact that I have epilepsy, so she is aware and gets it. I need her to know, so that when she is with me, if something happens, she does not freak out and can call for help.
I have plenty more examples of epilepsy and fatigue, but what I really want to share is how I try to actively avoid getting to the point of fatigue on an everyday basis:
Try limiting social outings a bit
The first thing I do is plan less social events and outings. Before we used to be go-go-go all the time, but now I schedule just one social event every weekend and that does the trick. This helps me rest and recuperate before the week starts. Now let’s be honest, there are times I am forced to make an exception, at which time I prepare myself for what’s going to happen the day after. Basically major fatigue which means hours of sleeping in, body ache, muscle tightness, and inability to do any focused tasks. I just eat, drink water and rest, so I am well the next day. And these days are what Netflix is for!! This fatigue is similar to what one would go through after a seizure, but that would last a couple days. So we have managed to keep this ‘one event’ rule going pretty well so we can transition onto the next thing on our ‘to do’ list. Interestingly enough, doing this has also helped me improve my ability to say ‘No’. It is something most of us struggle with, so in a way I am happy I have somewhat won that battle!
Be realistic about to do lists
Speaking of ‘to do’ lists, I assess each task on my list by the time and effort it will take, based on which I set up my plan for each day. While a normal person might take 2 hours to clean out their closet, I might take 4, or sometimes even the whole day. And at the end of that day, I might still be a bit tired but likely not fatigued. This also applies to tasks that require major mental focus. Those often result in a headache or tiredness if I don’t limit my time on said task. Of course this doesn’t always go as planned, but for the most part, it works for me.
Vitamins and exercise (yep, old school)
Another thing I try to do is take my vitamins on a daily basis. Many neurologists encourage women of child bearing age to take folic acid. You may also want to check with your neurologist to see if you should be taking vitamin D. In addition, eating well and getting some form of physical activity is also an important way to keep my body from shutting down. A bit of an irony, but it works as long as you keep the physical strain in limits.
A little quiet time
This one is not only important for those of us with epilepsy, but also for others who do not have this disorder. We all know as parents how difficult it is to get a little moment to yourself, so doing anything you can to get this in would be good. Besides locking yourself in the bathroom of course, because we all know how well that works ;-). Personally, I take some time to myself before going to bed to clear my mind, read and relax. It just helps me unwind and forget about all the things on my ‘to do’ list. I also make sure I get regular massages to ease my muscles.
So now when I hear “Why are you so tired today? We barely did anything” (and I hear it often enough!), I remind people of the fact that epilepsy and fatigue go hand in hand, which they don’t often realize. They are two sides of the same coin and we just have to learn how to deal with it in any which way we can. These tips help me and I hope they help you. Just remember, you cannot pour from an empty cup, so breathe, rest, relax and focus on what’s important for you to be at peace.
- Fatigue in epilepsy: A systematic review and meta-analysis – https://www.sciencedirect.com/science/article/pii/S1059131116302126