Tag Archives: Sleep

The Power of Thought

A couple of days ago I was dozing in my bed….and the thought crossed my mind about how my EX might have an inappropriate relationship with her counselor. Somehow, even though I was half asleep…I started to jerk which shook me fully awake. I then stumbled around and took some ativan…so in case any of those thoughts popped up again, I wouldn’t be shaken awake.

Isn’t it amazing how the thought of my ex and her counselor shook me awake? It was able to have that sort of impact on my body. I think about when I get really really angry and then lose full control over my body. It will do whatever it wants. Stiffen, seize, fall over. You name it. I have to be so so careful with my emotions and how I handle them, otherwise my brain will start to misfire (or not fire!) and I could be in serious danger with injuries.

Speaking of injuries, I just got better this week from a very mild concussion last week. My friend also has epilepsy and was very severely concussed at the same time. It was kinda crazy to think that we both got concussions-mine mild and hers severe-at the same time.

Anyhooo I am feeling like a night owl tonight. It must be all of those damn meds. Please tell me I am not the only one with sleeping problems and medications!

Love ya lots,
Sita & JoJo xox

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The Frustration of Seizures- What Did I Do Wrong?

not-keep-calm-because-i-cant-sleepSo 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

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Epilepsy: It Is What It Is

   VLUU L100, M100  / Samsung L100, M100  So I can’t believe it, but I have finally reached the point of accepting my Epilepsy for what it is. It’s not a curse. It’s not a life sentence. It’s a chronic illness and that’s it! Yeah, I know that the past couple of years have felt bleak at times, but now I know that I am so much stronger than I ever could have imagined. I have endured so many accidents, along with mental health problems. I think they should actually be called “mental hell” issues because that’s what it felt like. The pendulum was constantly swinging back and forth between anxiety and depression and I felt like I was just stuck in a life that revolved around this chronic condition. I felt completely and entirely defined by it and I was just sinking further and further into the quick sand with no way of getting out. Today though, I feel that I am standing stronger, with my head held high and I am completely and 100 percent proud of how far I’ve come. Tackling anxiety has been a huge feat (and I will admit, I do still struggle with it from time to time). Although I realize that when I get the feelings of anxiety- for example sometimes I feel like I’m being choked and my airways are being blocked- I know that it’s the anxiety speaking. It’s not me! I am able to self-talk my way through it and use some of the coping strategies that I have developed over the past few years. I’m not trying to say in any way that this has been easy. For awhile I was angry, and sad that I wasn’t in the point of my life that I wanted to be. Why wasn’t I out there with my Master’s degree doing social work? Why was I still doing my undergraduate when the majority of my friends had already graduated and moved on with their lives? Why, why, WHY!

     Well, this is MY path and this is where I am supposed to be. Who cares that I graduated a bit later. It’s not like there was someone sitting there timing how long it took me to complete my undergraduate degree. It was only me who was judging myself for how “successful” I was. All of my internalized thoughts of what it meant to be successful were dragging me down and were not of any use to my well being or success. Plus, it’s not like anyone really cared! It didn’t matter! All of my friends were there cheering me on when I graduated, and they all saw it as a huge accomplishment! It was like it was their success too! What an amazing feeling.

    With regards to having seizures, they have been under better control lately. Every single day I wake up and try to be as healthy as possible. This includes getting enough sleep (which is not tonight, I must admit as I can’t sleep), eating regularly, and exercising for 45-60 minutes for at least 6 days a week. I have been keeping a log of what I have been eating and how much I have been exercising and I have created health goals for the following months. You know that old expression, Rome wasn’t built in a day, but I am really trying hard to listen to my body and when I am tired, I will rest. I won’t try to push past my limits and then fling myself back into another round of seizures. Sleep is so important for seizure management, so I am working to not overdue it when it comes to socializing and being out and about. I am also trying to be more cognisant of how possible stressful situations can build to cause seizures. I just am trying to talk myself through it, and in some cases the things I have been stressed about are not actually worth the time and energy fretting about. Things will happen as they were meant to be. Also, I’ve realized something super important. If you have been following my blog you will see the shift in attitude for sure. And if not…then well I have no idea where you’ve been. Epilepsy is Epilepsy. So what? I can still lead my fulfilling life. I am planning for the future based on what I want to do and not on what Epilepsy might want to do. I have hopes, goals and dreams and I know I will succeed in whatever I want. Sure, I might have to modify some things, but who cares? I may have Epilepsy, but it sure as hell doesn’t have me.

Love you lots! xox

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5 Tips For Better Seizure Management

Healthy Life Next ExitSo I was recently looking back on my childhood and youth, and I was trying to remember what I did to manage my seizures. Man, I make myself sound SO old! My childhood and youth weren’t actually that long ago! Anyways, now that I have done some memory retrieval I have come up with a list of Five Tips for better Seizure management. They may seem obvious, but when you are out of a routine, or are new to seizures I think they could come in really handy.

  1. Get Lots of Sleep!
    I cannot stress this one enough! It is SO important! Being in a regular routine of getting up and going to sleep at a certain time really helps your body to be in a proper sleeping cycle. I remember when I was back in middle and high school I would get up at the same time and then generally always go to bed at the same time, unless if there was a special school event that was happening. Lack of sleep is a major trigger of seizures for me, so this habit really helped to keep them on the down low.

  2. Eat Regularly
    food quoteThis tip may seem like a “no duh” tip, but I have found that eating three square meals a day plus snacks really helps. When I have not eaten in a while (which I am guilty of) is sometimes when I feel symptoms. This tip makes so much sense: lack of food+ lack of energy=fatigue and sometimes seizures. Planning out your meals can be a useful way to avoid this. When I was cooking for myself I usually made huge dishes of something, such as a vegetarian lasagna, to name one. I would put each individual slice into a Ziploc tupperware container and kept some of it in the fridge and some of it in the freezer. When I came home after a long day I didn’t have to spend extra time making food because it was already done! I just popped it into the microwave and added a salad. Easy as pie! I also sometimes keep protein bars on me in case I feel extremely fatigued when I’m out and about during the day. I find that helps to keep me going until the next meal. 

  3. Exercise Regularly

    EF2087Before my seizures relapsed a few years ago, I worked out at the gym at least four days a week, plus dance and running classes at The Running Room. Exercise served as a way for me to get rid of all my stressors, plus I was able to just enjoy some “me time” while listening to my ipod. Even though I am slowly getting back into dance classes, I try to go for a walk 4-7 times a week. Walking as exercise is so undervalued and has so many health benefits! Don’t under appreciate walking as a form of exercise!

  4. Spread out Your Activities
    Peanut-Butter-Jelly-Sandwich-Options-KidsThis one can be hard to do, and difficult to master. I kind of see it like this: when you put some peanut butter on a piece of toast, you don’t want all of it right in the middle. You want to make sure that you smooth it out all over the bread so its equally distributed. If fatigue and over exhaustion are seizure triggers for you, try to equally balance your work and social life. I try to avoid having a bunch of social engagements all in one night. I get tired easily, so going from party to party is a likelihood for disaster. My ideal week would look like this: go to work 8:30-4:30, have selected days that I go to work out classes and go for walks on the days that I don`t, have a few days where I see friends, and have a day or two all to myself doing chores and errands and or just lazing around with my boyfriend. Does that make sense? I’m not trying to do everything possible in one week, and in some cases I just need to say ‘no’. I have been told that I am “gregariously introverted”, so basically I love to socialize, yet I love being by myself and don’t get bored in my own company. Don’t feel silly about turning down social engagements! If your friends know and care about your seizures, they will understand. Health always comes first.

  5. Take your Medications Regularly

    It is super super important to take your prescribed medications regularly. When I was kid I used a little medication holder. As I’ve gotten older I stopped using it, but am going back to it due to poor memory and an incident of taking too many meds. Not fun at all!! I would 100% recommend using a dose it, so that way you know that you have taken your medication or not. Setting daily alarms can also help for you to remember to take your medication. Even if you are “feeling better” still take your medication. It means that the medication is working and going off of it could have severe consequences. Going off of medication is something that you can discuss with your neurologist, but never EVER do it own your accord.

I hope these tips have been useful! Feel free to leave a comment or even ask if I have any more tips for seizure management! I am pretty sure that I have more than 5 up my sleeve. 😉

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Sita’s Top 10 Things To Know About Living with Epilepsy

1. Phoning an Ambulance is not Always Necessary

Ambulance trips are usually annoying, and expensive. Let me stress the latter: EXPENSIVE. Okay, the most recent times that I’ve been in an ambulance is when I have been in a province where I was covered by a different province. Long story short. A couple weeks later, I received a lovely bill in the mail, charging me for their services. This is not to say that ambulance trips are not always necessary. But generally if I am out and about and I have a seizure, that is everyone’s immediate reaction. I appreciate the care, but remember to time the seizure and if it goes over five minutes phone 911. A hospital can do nothing for me, except throw me in a bed, jab an IV in me filled with Ativan, and give me an emergency button to press for when I feel a seizure coming on. Basically, we’re just waiting for a seizure to happen. Otherwise, they’ll send me home. Ambulances can be very important for other people, but for me, they are rarely needed.

2.Recording Seizures is Absolutely Essential

Recording seizures is no fun, because you have to go through your mind and try to remember what happened during the episode that just happened. It might have been traumatizing, and you might not even remember it very well. I find that if I was alone when I seizure occured it is difficult to record, because I have no one to ask questions. Some questions that I might ask are: “Did I seem kind of out of it when we were chatting on the couch before the seizure happened?” Or, “Was I drooling when you found me on the floor?” Kind of gross I know, but recording seizures help keep track of whether your seizures are increasing or decreasing, and I can show them to my neurologist on my visit. I can also track them and see whether they occured during highly stressful times, during my period, or other notable events. I used to just write the number of seizures I had out by hand in my agenda, but I found a great online tool www.seizuretracker.com that goes into detail of every seizure characteristic. The site also allows you to make graphs to see how many seizures you’ve been having per week per month. It’s an excellent tool to have, and I use it when I go to see my neurologist, as he needs to know whether my seizures have been increasing or decreasing, so he can increase or decrease my medications.

3.Drinking Coffee and Alcohol is a No-No

You have been hearing me rattle on about caffeine, but I can’t stress this enough! Some people with epilepsy seem to be able to have coffee, but I can’t have it. When I first got to University I would get lattes to look all posh, and then I was drinking way too much coffee because I was drowning in work and fatigue. However, coffee just makes me feel more twitchy, and it doesn’t pair well with my already super sensitive body.

As I have made the personal decision to drop coffee from my diet, Alcohol is a non-negotiable. There are even warning labels on some of my medications stating “to not drink while taking this medication”. I don’t drink because I am more likely to have a seizure if I were to, and I don’t want to know what would happen, I don’t want to risk anything. Some people ask me if I feel like I’m missing out on things since I can’t drink, but I honestly don’t, since I’ve never drank before. If I go to a party I will bring an Arizona (the huge cans of Ice Tea) and sip on it the entire night, or if I go out I will always order a ginger ale. I usually just feed off of other people’s energy, and nobody makes a big deal out of me not drinking, since they know I can’t. I’ve even been in situations in restaurants where I wasn’t charged for my drink because it was assumed that I was the designated driver. I don’t even have a license! Hey-o!

4.Getting a Good Night’s Sleep is a Non-Negotiable

Some people can pull all nighter’s and stumble through the day, barely managing, but they make it. If I lose so much as three hours of my regular 8-9 hours of sleep, it feels like death. I don’t have the coffee to keep me going, and I have the side effects of the medications to contend with. While I was in school, missing hours and hours of sleep wasn’t doable. I couldn’t give up all my energy studying or writing an essay and then go to school on no sleep and be expected to pay attention in lectures. There is no way that I can focus. I have learned that I need a very solid routine of going to bed. My routine has changed since taking my medical leave from school, but now I usually start looking at the clock around 9, and will crawl into bed around 9:30, meditate for 20 minutes, and then watch some Youtube videos or listen to some podcasts before sleep. It is hard when I get invited out to an evening party, and I start to feel tired at 11, while everyone else is still partying at full blast. What can I say though? I just need my sleep, and there’s nothing wrong with that.

5.Eating Regularly is Essential

It seems like a no brainer: don’t skip meals! It’s bad for you. But it’s so easy to forget a meal. You get caught up in something, and before you know it, the morning whizzes by, and it’s late afternoon and suddenly you can’t wait for an early dinner. I generally didn’t skip meals, but now I have noticed that when I spend too much time without eating between meals, I get sluggish. Then I get even more fatigued, and the fatigued can eventually lead to a seizure. So if I am going to be out and about for awhile, I keep a protein bar in my purse, just to make sure that I have some back up form of food source.

6.Self Advocacy is Difficult, yet Important

Sometimes I find it difficult to advocate for myself, because my epilepsy is a hidden disability . It is hard coming out and explaining to people that I have seizures and going over with them the proper protocol of what they should do if I have a seizure in their presence. It’s kind of like ripping off a bandaid over and over again. I have gotten more used to it, so I am getting better at speaking out for myself.Essentially, self advocacy is so important for epilepsy (and other chronic conditions) because you need to speak out for what you need. I have had to write letters, make phone calls, and have meetings explaining things all pertaining to my epilepsy. I am understanding my epilepsy better, so now that I have a stronger awareness of it, so I can better vocalize it to others. I am also learning to deal with the emotional aspects of having epilepsy, so it does not interfere with my self advocacy. It’s not a skill that comes overnight, but I’m getting there, slowly but surely.

7.Learn Skills to Deal with Anxiety

As you may have read in my previous post, https://sitagaia.wordpress.com/2013/03/10/dealing-with-the-anxiety-of-seizures/ anxiety plays a big part in having seizures. Even if I haven’t had any seizures in a certain        number of days, there still lies the fear that a seizure will occur in a second. I have learned that meditation helps to calm my breath, as well as talking about how I am feeling with my friends and loved ones. If I am not feeling well, it is essential that I talk about it with someone, no matter how embarrassing or silly it sounds.

8.Exercise on a Regular Basis

Exercise is super important! I can’t stress this enough! Before my medical leave, I would go to the gym at least four days a week. It made me feel so happy, and it helped release any stress that I was feeling. Now I am not well enough to go to the gym, but I go for a walk every day, and since I live in a very hilly area, I get a pretty good workout! Stretching your legs can do wonders for your body and mind! So don’t leave this one out of the equation!

9.Keep In Touch With My Doctors

It is essential that I keep in touch with not only my neurologist, but my family doctor, to monitor the progress of my health. I need to go to my scheduled visits in order to determine what direction to take with my medications, and to see if there are any other specialized doctors that I should be seeing.

10.Never Leave the House Alone 

I never leave the house alone! Even when I take my dog for a walk-I bring my dog! Even then, I bring my phone and tell my mom the route I am going to walk. My seizures are not stable enough for me to take public transit or anything like that, so I need to make sure that I am always accompanied by someone, just to make sure. It’s okay with me, I mean I never get lonely! Over time I will be well enough to go places by myself, but for now, this is just how it’s got to be!

Anyways, remember that this is my own personal list. Hopefully in a year (or less!) it will change for the better! What are some of the things off of your list? Lots of love! xox

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End Result of Meditation Challenge and Caffeine Free Week!!!

Only if it's Decaf tho ;)
Only if it’s Decaf tho 😉

Alright! So Saturday February 23 was officially the end of my Meditation and Caffeine free week! I learned a lot, so I’ll break it down for you. Let’s start with the meditation.

I meditated at different times during the challenge, just to see what I liked best. I tried meditating in the morning, afternoon, and at bedtime.

I found the morning meditation to be really great for starting off a busy day. I would probably recommend it for people who are morning people, and don’t mind getting up a little bit earlier. I found that the morning meditation really helped focus my mind, and it helped give me that little bolt of energy to get my day started. I would probably do a morning meditation if I had a job interview that day, or had something stressful to go to. (I had neither happening this week, but in the future, it’s good to keep in mind).

I also did an afternoon meditation, which happened around 3:30/4pm. The afternoon meditation was amazing! It served as a good pick me up when the afternoon crash came knocking at my door. I sat on my yoga mat and focused on the stillness of my breath for twenty minutes (using a guided tape), and when the meditation was over it was like I’d had a nap! I was able to take my dog out for a little walk and I could carry on the rest of the day without feeling like I was dragging my feet. (Remember, I was on no caffeine, and even though I don’t drink coffee, not being able to have my afternoon tea was a drag).

Towards the end of the challenge I found my favourite time of the day to meditate: bedtime! I find that meditating at bedtime helps to quiet my mind of any stress or worry so I can slip into a restful sleep. For me getting enough sleep is crucial, as I need to ensure that I get enough sleep. Too many nights of tossing and turning and worrying about silly things can cause seizures, simply due to the missed hours of sleep. Here’s a link to a meditation tape similar to what I use. Check it out! http://www.youtube.com/watch?v=4vgKzXdwtRE

At first the caffeine free part of the challenge was pretty tough, but during the challenge I just swapped out my regular Green Tea for the decaf version. Eliminating caffeine in conjunction with meditation has increased my energy levels, and my head just feels more clear. I wasn’t anticipating this challenge to lead to long term changes, but I figure I may as well keep with them! If I’m feeling good, why go back to my old habits? I’m sleeping better, I have more energy, and I feel less anxious. I meditated a total of 5 out of 7 days, and drank absolutely zero caffeinated beverages. Mission accomplished? I think so. 😉

Are you trying a similar challenge or have any thoughts? Drop me a line in the comment section below! xox