I am sure you have heard about self-care, (especially if you have a form of chronic illness), and have been told to practice self-care. In my Social Work degree, the idea of self-care was beaten into us. But what is it? It is the way of taking care of yourself when you need down time or are feeling symptoms due to your illness. (ie Seizures, exhaustion, flare up, hard to walk, etc.)
1.You Feel Selfish
Taking time for yourself to recharge or just tell your partner or friends that you cannot do much one day feels crappy. It feels weird sometimes to say “Hey I can’t come out and meet you because I had a really bad sleep and pushing myself would be too much.” I am lucky that my fiancee is super supportive and understands that some days I can’t do too much.
2.You Miss out On Social Events
Sometimes when you need some good self care time, also happens to clash with social events that you were looking forward to. This year I missed my own birthday party due to Psychogenic Non Epileptic Seizures. I was super bummed because the majority of people were actually attending! It was for the best though, and thankfully it wasn’t on my actual birthday.
3.Sometimes you don’t know *how* to self-care
Prior to getting many seizures, I wouldn’t be able to tell you what is in my self-care toolkit. (Stay tuned to find out what they are!) It can be difficult to figure out what the best self care options are best for you. For a person with a chronic illness, it can vary greatly, as everyone has different abilities. Going for a short walk might be good for me but not so good for a person with arthritis who is experiencing a flare up.
4. Your Self-Care can seem “lazy”
if You need to rest in your home without doing much, it can feel like you’re being “lazy”. As a person who never, ever wants to be called or labelled as lazy, this is a very hard one for me. When I legitimately need down time, I wish I could have done more around the house, and it makes me feel bad when I haven’t pulled my weight when my fiancee comes home. Although she understands, I am very hard on myself, which drives me crazy.
I’m having a self care day, so I have been thinking about this a lot. I’ll be posting about my own personal self-care toolkit soon so stay tuned!
Sita Gaia xox
I overbooked my schedule this week and now I am exhausted. That caused two seizures so now I am too anxious to leave the house. This is so shitty when it gets like that. I had plans to see my mum and get pedicures for an early mother’s day gift, see a friend who is going back to the UK forever on Saturday, and help my fiancee with groceries.
Let’s say one thing: sometimes I go into overdrive and feel I need to be as “productive” as a person without a chronic illness. That’s what fucks me over and I still haven’t learned the lesson, but sometimes I still feel the need to do try harder and harder.
Honestly, all I wanted to do was see Melissa McCarthy’s new movie tonight and chill. Yas I love her, as she is fucking hilarious. I rewatch her really old show (that, let’s be really is problematic) Mike and Molly because it’s funny.
I hate the anxiety that comes with epilepsy. Yes there are tons of things that can combat it, such as meditation (and I meditate daily), but it’s a reality. I know that. It pisses me off. I hate staying at home all day as I at least like walking down three blocks to the Starbucks but it makes me anxious, and my fiancee anxious. Yeah, I know that dwelling on it doesn’t help, but I’m not happy with how my day is turning out.
Lots of love,
First off, I have an amazing health team to help treat my Refractory Epilepsy. I have a top notch epileptologist, Vagus Nerve Specialist who comes in from out of town once a month, an epilepsy nurse who is fantastic, a neuropsychiatrist who I see every 6 months, and a psychologist who I see once a month. Plus I would like to add my family and friends. Whew! What an amazing team!
Although my epileptic seizures are under pretty good control now (HALLELUJAH!) there are things I need my team to know. Epilepsy is not just seizures. Epilepsy now for me means counting my spoons ever so carefully. If you don’t know what the spoon theory is, check it out here: the spoon theory.
I always need to make sure that I don’t over-book my agenda. If I have appointments that week, I really can’t over socialize. I also need to make sure I have time to help my fiancee around the house and grocery shop on the weekends.
So, health team, I need you to know that I struggle with anxiety and depression, despite the fact that my seizures are much better controlled. I need to opt out of things last minute if I am feeling exhausted. I am doing my absolute best, but sometimes that means combating the depression or anxiety that looms over my head on a regular basis. Just because the seizures are gone, there are still things that I need to work with. Don’t pity me, I just need you to know. I am a chronic illness warrior, so I keep fighting the good fight.
Thank you for doing all of the amazing work that you do! I couldn’t get through it without all of you!!
Woohoo it is almost summer! Finally done with the hybernating!
I have been feeling a bit down today but I had some errands around the house to do so I did them because I knew that would help. I have gone on and off being a couch potato as TV is one of the major things that calm my stress and anxiety. I remember coming home from high school in Grade 12 and Oprah was on and i felt my stress melt away as I stretched out on the couch.
In university I went to the gym 5 days a week and did Zumba on Monday nights and sometimes even Sunday mornings! I was a bit of a gym rat, and going to the gym relaxed my stress from school and relationship issues. At 21, it became difficult to go to the gym due to my uncontrolled seizures and decided that yoga would ultimately be my workout. I love yoga, but I missed that satisfaction of a sweaty workout.
Today I was looking at the photos that I put up, and one of them was of just me that my friend took in my other friend’s Jeep See above.. We were all headed to the beach and I looked so happy. “What happened to that Sita Gaia?!” I asked out loud. I quickly decided to actually use my fitness clothes that were sitting there, and I popped on my headphones and snapback. Let me tell you: running after a long time was hard and I am sure I was huffing and puffing but that’s okay! I came home and since it was SO hot out, I pointed the oscillating fan in front of me as I did more full body exercises. I feel more like myself now and my low mood has been replaced with serotonin. It’s fucking fantastic! Sure, I won’t be able to do this everyday, but this is literally a step in the right direction!!
Sita & Jojo