Oh hey friends! So I am formally introducing a new weekly addition to my blog: Epilepsy 101 every Wednesday. It is where I will answer common questions that I get about having Epilepsy, so hopefully I can answer many questions! If you have any questions that you want answered, simply post it in the comment section. Also, I realize that this pic doesn’t 100% go with this theme, but who cares!
Okay, so this week’s question! What Do People Say When I Tell Them I Have Epilepsy? Here goes:
Over the past couple of years I have had to ‘come out’ more and more and tell people that I have Epilepsy. When I was a kid I never had to tell anyone. I wasn’t ashamed of it, per say but it really wasn’t an issue as it was well controlled. Coming out is sometimes hard. You just want to have a normal conversation, and you don’t want to interrupt it by mentioning this neurological disorder that is actually a pretty big deal in your life. When I tell people I usually say “Erm, by the way I have Epilepsy. Do you know what that is?” People generally understand that people have seizures with this chronic condition, but I generally need to clear up what my seizures do (or don’t!) look like. I have to explain that I don’t convulse (as people with Tonic Clonic seizures do), but sometimes I can fall unexpectedly due to muscle rigidity. People are generally concerned about what to do in the event of a seizure, so I always tell people to try and grab me from behind with their hands under my arms so they can gently bring me to the ground. It is very difficult to catch my seizures before I fall, so I tell people to not feel bad if they don’t catch me in time. I also sometimes have to explain what my seizures look like, which can be embarrassing as sometimes I make weird noises or do weird things.
When I tell people about my Epilepsy, they are generally curious and want to know more. This is understandable as there isn’t as much public knowledge about it as other chronic medical conditions. I appreciate this curiosity, because it shows that the people in my life are interested in learning more and want to better educate themselves on this chronic medical condition. I wish that there was already a strong knowledge about Epilepsy, and it would be the same as me telling them that I had a condition that was already well known by the general public. That would probably be the most ideal situation. However, with advocacy I hope to contribute to making Epilepsy better known to the general public and make it so people with seizures could walk around comfortably in society, because they know that people are able to help them in the event of a seizure.
Have a question?? Feel free to ask! Happy Wednesday! Love you all!! xox
Ok, so we all know about the fear of failure. We all sit on the couch watching Netflix instead of attempting to train for that half marathon, because really we’ll probably fail at it. But here’s the kicker- what if we really were successful?? What if we actually made it to that half marathon and kicked ass?? I say that because I have made myself a victim of Epilepsy so many times and it really hasn’t gotten me anywhere. So what’s the point of this little nugget of wisdom? A: don’t make yourself a victim of a situation, and B: why let fear of success hold you back? If you do end up failing, at least you can say you tried.
I also was watching a video with my Mom last week about Dealing with Anxiety through Imagination. Essentially, the premise was that we haven’t been taught much about imagination during school, so we don’t have the mental capacity to believe that things *will* work out, and our fears won’t collapse at our feet in shambles. So, instead of actually falling and having a seizure during a walk, I told myself that *will* make it home successfully and unharmed. I tried this tactic this week and it actually worked!! It was amazing! So I have been trying to think the best and imagine the best possible outcome. Surprisingly it has been amazing. Maybe you should try it!!
In the past week my life has changed monumentally. I have adopted a little chihuahua pug mix and she has brought so much joy and happiness to my life, let alone routine. I now have a set bedtime, set walking times for the dog, and set feeding times for the dog. I also feel less lonely which has really helped a lot with regards to my daily mental health. In addition, I feel like more like a “productive” person in every day life, which has made me reach out for further aspirations, which I would have never bothered with in the past.I recently have firmly decided to get a small volunteer position so I can continue ongoing learning in the field of Social Work. Yesterday I wrote a great cover letter and prepared my resume for a volunteer position that I really hope to get! It would be perfect for my ongoing learning as extensive training is provided, as well as it will be able to utilize my skills such as one on one skills, advocacy, and making referrals. So cross your fingers for me!!
So what are you holding back on, just because you may or may not succeed? A 5km race? A new job? Seeking new friends? I say go ahead and try- the results may just surprise you!
I hope you are having a fantastic week! Fight the good fight! Love you all! xox
SO recently I have realized something important about my blog. This blog is not just about Living with Epilepsy, but it is also about living with mental health issues. I say that because mental health issues is so deeply correlated with Epilepsy, and I believe that individuals with epilepsy are more likely to have mental health issues if their seizures are not well controlled! (Can I say holla?!) I stand firmly in the opinion that it should be okay to talk about mental health, so here I am going to continue to do it, in hopes of helping others, as well as taking some of the pressure off of my chest.
I have been feeling very anxious lately. I had a bad accident about a week ago which brought back memories of previous accidents, and not to mention a very sore head. That story is for another time though. When I say I am feeling anxious, I am not saying it in a passive way as in “oh yeah I got some anxiety going on”. You know how people sometimes use these phrases casually? Well, I am not. I was meeting my friend yesterday and while on public transit I suddenly started to have chest pains and it felt hard to breathe. I didn’t understand why. I was just going to meet a friend. A FRIEND! This wasn’t a job interview or a blind date. I was meeting someone who I had a great friendship with and who cares about me. I tried using some of the techniques that I have been taught to help fight feelings of anxiety, such as describing what my left shoe looks like, as well as deep breathing. That helped a bit, but I was caught off guard with how suddenly anxiety just overtook me.
Anxiety has taught me that it can be absolutely debilitating to leave the house. I am terrified of falling and hitting my head (or teeth) if I am out going for a walk. I even tried a yoga class, and I ended up having a seizure right before Savasana (meditation). Like, really?! Savasna is the only reason I was there! Each day takes a tremendous amount of courage for me to go out and do things, such as see friends, or simply go for a walk in my area. I mean yeah, I am working on seeing friends and going for walks but it is easy to become a shut in. Being the person that I am, I judge myself for being like this, and I ask myself why can’t I just “get over it?” My seizures are so scary, especially because I get little to zero warning before I have a seizure and boom. Another accident. I also do not have the same seizure time and time again, so I never know what to expect. I know I have talked about mental health on here before, but it is very relevant to my life right now. I am a firm believer in seeking help, so I’m in the process of that right now, which should help.
So that’s where I’ve been at lately. I’m trying to come up with ideas to help with the anxiety…so hopefully there’s progress there. Do you have any ideas for me??
Love you lots! xox
Sorry for the long awaited update…I’ve been going through some stuff but I really don’t feel like sharing with the whole world. Just wanted to let you know that I am still alive and kicking.
Love you! xox
So I’m up tonight not because I want to be, but because I’m nervous. As I was trying to fall asleep I woke up to a shaking foot and flapping wrist. My wrist was seizing so badly it was almost painful. Now I am scared to go to back to sleep. After having one seizure it sometimes triggers a cluster of more seizures, especially during sleep. I will wake up seizing, go back to sleep, and wake up seizing again. This can happen up to about ten times during the night. It’s hard to know the exact number because it’s kinda hard to keep track of. I am frustrated. What did I do wrong to trigger the seizure? I ate properly today, stayed hydrated, and avoided the extreme heat that we have been having this summer. I worked hard all day helping my parents clean the house, and although it was arduous I didn’t even put in half the amount of work they did.
This chronic condition is truly a pain in my ass in this moment. I want to go to sleep but am too scared to. I am not living in the moment. I am also worrying that by staying up it will ruin my tomorrow by being too tired to do much. My seizures have decreased significantly over the last few months, but it’s hard to have one once you feel like they’ve kinda gone away…even if it’s a little seizure that causes no physical damage. I feel sad. I wish this chronic condition would just go away. I totally know that life could be way worse, and in reality I am actually doing pretty well.
So, I just needed to get that off my chest. Love you all xox