Epilepsy Self Care
Self care tips when you have epilepsy
Ah, self care. That delicious buzz phrase that usually draws to mind visions of spa days and home-made avocado face masks.
But when you have epilepsy self care is more than just sporadic mental breaks, or eating an entire tub of ice cream and calling it a “self care” day. Epilepsy self care is what you do as part of your daily routine that keeps you safe and healthy, and helps you manage your condition the best way you can. It also helps you recover faster and get back on your feet (literally, in some cases!) when things go awry.
Self care will look different to everyone. It will also not be a guarantee that it will stop your seizures or make them any less sucky (yes, seizures can just suck sometimes, my grandma would hate me using that word but it’s true!). It also doesn’t mean that if you have a seizure that you’re failing at self care (see my What I wish people had told me post- it’s not your fault if you have a seizure!).
But it helps! And here are some ways that I practice self care for my epilepsy, and hopefully some tips you can take away for yourself!
Knowing your triggers- and managing them.
This was the first thing that I did when I was diagnosed, and I thought I could outthink my condition if just avoided all my triggers (spoilers- this isn’t how any of this works!). But it is important that if you know that certain things trigger seizures, you manage them as well as you can. For example, I know that sleep deprivation is a big one for me, so when I’m practicing self care I make sure that I stick to a bedtime that allows for enough sleep to function the next day.
Heat is also a big trigger for me, so I know that I need to be aware of the temperature and stay kool (and the gang... I’ll see myself out!). Being honest with colleagues about this one and taking time out or removing myself from certain situations to cool myself down has also been an important step in taking care of myself. Which leads me to my next tip.
Create a safe environment
At home, this means that I never shower or have a bath when I’m by myself, or when I’m feeling unwell. I also leave the bathroom door open so that if I do have a seizure, my husband can get in and help me (this was a “learning the hard way” lesson we learnt shortly after moving into our house- if I’m lying unconscious on the floor, you can’t get the door open. Lesson learnt, door stays open!)
At work, this means being open and honest with my colleagues about how I’m feeling, and removing myself from triggering situations, such as areas that are too hot, flickering lights, or other things that might lead to me showing off my party trick (as my husband calls it). If you have colleagues that are not responsive to this, stay as firm as you can or keep looking for someone who will listen.
Your safety is more important than someone else being inconvenienced, and trust me- it will be more inconvenient for them (not to mention you) if you have a seizure!
Surround yourself with positive people
Yeah, this one is not always the easiest, or in your control. But do your best to find people who reinforce positivity and not people who feed into negativity or anxiety. After I was diagnosed, a friend did one of the best things he could ever do- he put me in contact with another friend of his who also has epilepsy. I got to talk to someone else who was going through the same things as me, and I didn’t feel as crazy or alone. His positivity was such a blessing, and helped me to fight through the cloud of anxiety and confusion.
Find your tribe, talk to people about what you’re going through, and find people who boost your spirit.
Taking your medication
This should be a no-brainer, but if you are on medication it needs to be a part of your self care routine. Being a control freak, I have alarms on my phone to tell me when to take my meds so I know I’m taking them at the same time every day (everyone at my work knows what the 1:35pm means!).
If you are like me and also take medication for other conditions, taking these at the same time each day can also help create more stability. And it doesn’t hurt to feel more in control of your day!
Diet and exercise
Yeah, I can hear you groan! But it really can help to eat a balanced diet (no, this doesn’t mean a cookie in each hand!), and regular exercise can help you recover faster from seizures. I also have a regular “re-feeding” routine for after I have a seizure. For me, I’m either really hungry or can’t face eating after a seizure. There’s not usually anything in between. I usually bite my tongue so eating anything hurts. So my re-feeding always includes jelly, fruit pouches and yogurt.
We try and keep most of these on hand most of the time so that they are available if I have a seizure. My re-feeding process is an important part of my recovery process, as it helps me get back to my regular diet as soon as possible, which helps prevent a seizure cycle triggered by not eating.
Exercise for me is also a way to reduce stress. I try to fit it in where I can, and make sure that it’s safe. This has looked different in different seasons of my life, from regular cardio workouts and weight training, to simple walks around the local lake listening to music. Whatever works for you, as long as it alleviates stress- and doesn’t add to it!
Be your own advocate
Spending time getting to know yourself, what works for you and what you need to keep yourself safe and you will find that it is empowering. Speak up for yourself when you are in situations that aren’t safe for your epilepsy, and never feel guilty for saying “no” to something that isn’t conducive to keeping yourself safe. Decide on a goal and stick to it. Is your goal to stay seizure free (or as seizure free as possible, let’s be honest)? Then speak up, be your own advocate, and do what you need to do to fulfil your goal.
You’ve got this!