As I write this, I’m dealing with a terrible migraine constantly growing bit by bit from the moment I got up today. As my family sees, I got up pretty late. It was almost noon. But as I know it, I haven’t slept since the first alarm rang when it was still dark.
I have been experiencing pain in my back and head from the first day of this year’s festive season, but I kept going on and on.
Yesterday, I heard a doctor on the radio explaining the masses what to do when someone experiences an epileptic episode. Today, because of my constant cribbing about my pain and my internal confusions, my colleague suggested me a medicine that I could take to feel better. But then, she stopped, considering the fact that I was epileptic and she was not, that medicine might be forbidden in my condition.
Looking back at how my work day went today, or rather the half day of work, I have half-heartedly and absentmindedly edited two articles which I’m not sure are worthy of publishing since I’m not in the best of my health today and I don’t know if I edited them properly or not. I haven’t written anything today, apart from 4-5 emails, and now this thing. The only thing I did differently and new today was to make a pantry bill in an attempt to distract myself from the monotonous work I do.
Actually, if I think of it, my work, writing, is not monotonous, but then, it still is. I don’t know how.
Once I read an article about how to increase your blog traffic and how to establish yourself. It said that I should first pick a niche. This blog is now older than 9 months and I have been posting regularly, but I still haven’t figured out my blog’s niche yet. I also discussed this with my husband and he told me that I should write about epilepsy and tell people how life with epilepsy would be like. I certainly gave it a long, decent thought, but then, I dropped the idea. Why? Because when I think of my life with epilepsy only negative words come to my mind – restriction, stress, insomnia, medicine box, nightmares, routine, fear, monthly visits to the doctor, forced attention to medicinal combinations, and such. Actually, it’s all noir.
I feel restricted to go out and have fun. I’m not fond of having alcohol and losing my mind and then, feeling the high and having fun. That’s not my idea of having fun. But once in a while, I do want that. I want to feel that rush. But I can’t. Because the spinning of head makes me feel that it’s not because of alcohol or loud music or excessive dancing, but because you are about to have an episode. And then, my attention diverts from a fun party to trying hard to keep my eyes open and observe my limbs, in order to know if they are quivering. In the darkness, I try to recognize a face who knows my condition and then I tell that face’s owner and steal away his/her joy and peace of mind too.
Likewise, I cannot have a heartful plate of spicey noodles, momos, street food, icecream, because this harmless food flushes my face with hot blood and I start to look around to remind myself that it’s not another episode.
Plus, I cannot go out on my own as long traveling is prohibited for me. I have had two episodes while traveling. So, another thing which gives me happiness, apart from food, thing that makes me feel that I’m not alone, traveling alone, is struck off my list.
My life with epilepsy is neatly underlined with stress. I cannot lean back on a simple office chair, because even that has the potential to make me feel vertigo. A day before, I spilled my tea on my desk. After I got it cleaned up, my hand shivered again and I was about to spill the rest of it on myself. So, I discarded my right hand and held the cup up with the left one. The remaining day passed with me trying to hold my pen in the accurate writing position in my right, writing hand.
I’m a writer, and we no longer write on typewriters. We have laptops. But the thing is whenever my system gets a little hung up or my mouse-laptop connection is fucked up, I start to feel that it’s an episode, because now I’m trying to move a cursor on my screen and it’s not happening. A normal, I mean non-epileptic person would take this as a technical glitch and try to see what’s wrong with the mouse. But in an epileptic person’s brain works differently. He starts checking his own limbs and his own heartbeat to confirm it’s not a technical glitch with his own brain.
Trouble having sleep? Well, you’ll say it’s a problem with everyone these days. Trouble waking up? Oh! It has been a problem with everyone since times immemorial. So basically insomnia is something I shouldn’t talk about. Nonetheless, it’s one huge part of the epileptic life’s package.
We have to keep track of it all the time. Rather, I have to make two sets of the same medicine, keep one in my office bag and another on my bed’s side, so that I never skip a day, because if I do, the course of 5 years starts all over again. Let me tell you, I have been on such courses since I was 13, and I’m 27 now – basically half of my life. Finding the strip of tablets run out, is an epileptic’s one of the biggest stresses.
“Forget it! It’s just a dream.” people tell me as if it’s some dust I can rub off my shoulder. How do I tell them that I happen to have them every day, at times they are repeated and at times, they haunt me in series, like a television series. And they are really bad. Terrifying, to the extent that I cannot forget them for days. And then, I am scared to sleep back again.
On my last visit to my neurologist, I discussed this issue with him and he suggested me a sleep expert. The expert prescribed me a relaxant and told that it would help me fall asleep and that I would not get nightmares anymore or remember them, because remembering them is the bigger part of the issue. Trust me, on my way back home, I was really happy and was really hopeful that my life would change after this.
First, I did not get the exact medicine and then, I became habitual of it within 15 days. So, my nightmares returned and so returned my sharp memory of retaining them.
After a week of struggle, my husband was able to find the exact medicine at some store, but they were only 10 tiny tabs. I took them for 10 days and I was back to being all happy and cheerful. The medicine worked.
Today, it’s been 2 months to that week and I haven’t found that same medicine again, and have been doing up with its alternatives. They all…suck.
This is something my mother-in-law greatly impresses on and something which I deeply despise. Because, I just cannot follow it. And routine is something that my neurologist say would make my life way easier. However, I’m trying my hand at it with the help of my mother-in-law.
Now, either my judgement skills have worsened or I have gone blind, because I literally do not see any improvement in my internal state of mind. Of course, my outside life has become more regimented, but my inner battle hasn’t had a sight of a white flag.
Oh! Isn’t that obvious by now?!
“Do everything in moderation,” that’s what my friends, my sister and my dad tell me. I try to do that. And I feel fear, well, in moderation.
Isn’t that a real feat?!
Monthly visits to the doctor
I have changed numerous doctors in the span of 14 years of my treatment so far and unsatisfied with all of them, I went back to my first doctor, who made it seem like I had a hope of getting better, while one day, also telling me that I might have to stay on pills for the whole of my life. In all of the 14 years, I have respected his honesty towards my condition and my mental state. He has never tried to lie to me in order to make me feel better, like other doctors did, or even do.
As I told, last time he recommended me to see a sleep expert. Now, I want to see this expert again and tell him how my progress has been so far and see if he could do something about it. But, I won’t get an appointment.
Earlier, it was the festivities that kept the two doctors busy, and now it may be a vacation with family or some conference abroad. I have been trying to get an appointment and all I get is an operator telling me that the number is switched off.
Forced attention to medicinal combinations
Every medicine has a reaction with certain other medicine, so some combinations are prohibited. In my case, only a few work. So before any doctor prescribes me a medicine for something as insignificant as common cough, I have to make him aware of my epileptic condition and he would either strike off what he wrote or suggest me how to take it better – if your anti-epileptic is in morning, take this medicine at night, and like that.
So, how is that a stress?
Well, if by now you cannot see it for yourself, then I can’t explain.
If, my dear husband, by any means, you are reading this, you now know why I don’t like talking about what’s happening to me. Why I despise and avoid visiting the doctor and try to heal myself without medicines. Why I’m so scared to fall asleep and sometimes, so slow in my professional deliveries. And why I’d rather not make my blog about life of epileptics. I’d rather keep my stress and worries to myself than disturb my near and dear ones with details about it. Further, it would make me more engrossed than ever in this condition which I categorically do not wish upon me.
To those who know people with this condition – I’m not saying that I do not have fun and that I do not enjoy the things that life has to offer. But I do them at a gigantic risk. I have a travel bucket list that includes all primary geographical phenomenon that I only read about in books, like auroras, cold desert, red sea, and salt flats. I plan to go on exploring these places all by myself and witness the god’s miracles.
To others, our lives look a bit troubled because we are falling sick almost every week with something or the other, but it’s still okay with them as long as we are taking our treatment regularly. To us, however, life shows a different face. And it’s sad. And very scary.