Fear of Permanence

A fear that I did not know existed within me.  I do not like change too much either within my personal life, but permanence terrifies me. This fear for me rises from anxiety with the idea that good and pleasant things will fall through. It also rises from a fear that I will not be able to change something I do not enjoy – but instead, find a way to make it mediocre.

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Epilepsy is permanent. Have you ever imagined waking up one day, knowing you will never get better? Imagine being told that at 19, just a few months into being diagnosed with something completely out of left field. There is no magic pill to erase it, just to tolerate it. There is no guaranteed surgery or interventions. All you have is hope. To hope it gets better, to hope it becomes tolerable, and to hope it will not be your downfall. Coping with the permanence of Epilepsy is exhausting. For some, yes – they do “grow out” of it and able to live a normal life; very common for childhood diagnosis depending on the type. Some live completely seizure free with medication. Some do have success with surgery. Then there are some that may have less seizures, but they still come. And for the unfortunate few, nothing helps.

Even if we are not actively seizing, we still suffer. Epilepsy does not end when the seizure ends. For myself, head trauma is included every single time accompanied by blackouts and lost memories. With each seizure the time to recover is longer and lack of memory worsens. Then let us not forget the pills that lessen these events – they slow down cognition processes and understanding. They too affect memory storage. Then there are the mental health side; both condition and medicine induced. Sometimes we lose ourselves for the sake of tolerable life.

This is permanent for most of us. This is permanent for myself. There is no reversal; my memory will not come back. Memories lost will need to be triggered and constantly triggered to reform them. Without medication my learning processes may improve, but will equally be hindered by seizure frequency. Perhaps the constant seizures would have a worse effect. My family has been permanently affected and opportunities are forever missed. This is our reality.

  • “Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s combined – yet receives fewer federal dollars per patient than each of these” (source)
  • “The overall risk of dying for a person with epilepsy is 1.6 to 3 times higher than for the general population” (source)
  • “Epilepsy-related causes of death account for 40% of mortality in persons with epilepsy” (source)
  • “Neurologists say sudden unexpected death in epilepsy (SUDEP) is second to stroke as a cause of years of life lost because of a neurological disorder” (source)
  • Tonic-clonic seizures are an important proximate cause of SUDEP” (source)
  • SUDEP takes more lives annually in the United States than sudden infant death syndrome (SIDS).” (source)
  • Perspective wise: 47,055 people died in 2014 from drug overdoses of various types and 35,398 from motor vehicle accidents in the U.S. (source). Epilepsy takes 50,000 lives each year (source).

These are permanent facts we have to live with every single day. These facts have not changed and without support and awareness, will not see a change. All we can do is hope and confine in those close to us in our times of weakness.

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March 26th is Purple Day; a day in which we must raise awareness for Epilepsy. A day in which we must take a moment to realize that such a common phenomenon is underfunded and takes lives without notice. We deserve more than mediocracy.

Wear your purple with pride

 

 

 

Coping with Epilepsy – Social Acceptance

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The Social Side Effects

Epilepsy affects many parts of our lives; friendships, family, work, school, relationships, and so on. There can be negative social ramifications such as losing what was once best friends, family distancing themselves, or coworkers and colleagues becoming hesitant when around you. Some of us deal with stigma in our daily life followed by shocked faces and funny looks. But there are also positive outcomes like finding new friends, building stronger relationships, and finding new opportunities that you never knew existed. I have recently written a post on self-acceptance of epilepsy and the journey it takes to get there – which can be quite long. But how do you deal when others are having an issue of acceptance? How do you cope with the loss of friends and the distance of family members? You will be surprised with how similar both roads are. Here are some tips I have learned along my journey.


Self-Acceptance

First and foremost, you must accept Epilepsy to a degree within yourself before you try to talk to friends and family about it. Of course it is possible to go ahead or simultaneously travel the route of personal acceptance and social acceptance but things will become easier if they are already accepted within. I often find topics to be easier when I understand them for myself. Even if you do not completely accept the idea of Epilepsy entering your life – at least begin the process of understanding Epilepsy or perhaps your process will start here.

Educate

As I said in my last post – education is key. Educate your family, friends, coworkers, and colleagues on Epilepsy and your type of seizures. This will help them gain confidence in your knowledge about you condition as well as giving them personal confidence on how to help you. People are terrified of the unknown – they do not like to be caught off guard and some do not like the feeling of responsibility that they did not ask for

  • Erase the Stigma: Education is also helpful in removing stigma. “You have Epilepsy; I am not sure if you can do that” – have you heard this before? This blank statement usually comes from people who do not bother to ask you about your Epilepsy or do not listen to you but rather hear the term Epilepsy and revert to what they know. There is a lot of information out there, but from personal experience I noticed people tend to become fixated on the worst case scenario. They will avoid giving you a chance at something or inviting you somewhere because it avoids a potential risk. While yes, in some cases this is the best way to go, but unless the risk is involving your life being placed in harm’s way, then vouch for your right to have a chance. Educate them so they know how Epilepsy affects you. Step by step, this will help erase the stigma we face daily. That person may become inspired and tell three other people “did you know a person with Epilepsy can_____” Because we CAN and we WILL break these walls – give yourself a chance and others will follow.

Reassurance

While the idea of consoling someone older than you such as a parent or caregiver or consoling a friend on your condition may seem funny; they need reassurance just as much as you do. Some parents/caregivers may place the blame of Epilepsy on themselves or feel that it is their fault. They may feel that if they did something differently, you would not have to go through this journey. They may begin to harbor guilt which can manifest itself into arguments or unwanted distance. It may be beneficial to sit down and reassure them that this is not their fault – it is a random circumstance. Do not forget to remind them that no matter what, you appreciate what they do – they are going through a hard time right along with you. This can become emotionally overwhelming for you – as you may not understand why they are emotionally all over the place when YOU are the one going through Epilepsy in the literal sense. Do not forget they travel this road too as they watch every step you make.

Communication

Always keep a clear line of communication. Communicate your feelings, your concerns, and do not be afraid to ask them about how they feel or what their concerns may be. Sometimes this can be an emotional experience – you may hear things that upset you or you may not know how to react. This is okay. It is better to have things said and try to work through it as a team then harbor feelings of resentment, guilt, and/or fear which can add stress that is not needed. This can be therapeutic to both yourself and the other person.

Grievance and denial

This may be difficult to deal with when it comes to family – even peers. Some people may not believe you at first – this could be out of their own fear and/or wanting to avoid the situation. Some may truly not believe you and see it as “attention seeking” and more of a behavioral issue. One of the hardest things you will have to do, but yet one of the boldest and bravest, is to sit with these people and explain to them what is happening. I know it may sound cliché or redundant, but have a serious heart to heart, let them know how this makes you feel and ask them why they feel that way. This may be something that can be easily worked out or something that time itself may have to work out. Know that just like you, family and friends will go through a period of grievance that their loved one’s life will be changed and acknowledging that difficulties are going to come. It is hard to watch someone go through a condition like Epilepsy where they can feel helpless at times.

  • My perspective: I remember when my brothers had seizures – way before I developed Epilepsy myself. I remember standing there feeling like I could not do anything and with my elder, younger brother being essentially non-verbal – I wanted nothing more to experience what he did. Granted, I may have cursed myself at a young age but I wanted to help him and help others understand what he was going through. Family and friends will go through these emotions as well – they do not know what they should/can do. It is going to be part your job to help them along and educate them. This can be done either by giving them pamphlets, links to support groups and blogs, having them come to neurology appointments, or simply talking about your condition with them.

Loss of friends and distance of family members

While I wish I could say this will never happen, realistically it could and is something to be prepared for. Epilepsy is a lot to handle on your own – there will be times where you need help. Some people may have very mild cases and may not need the extra reliance. But for those of us who will – friends and family may not always be the most understanding. Once they go through the initial shock of the diagnosis – some may decide to make their distance. This can be an emotional time as well as close friends and family members may become non-existent. If talking to them and giving them some education on the topic does not help them cope; unfortunately, you cannot force them to stay and you should not have to. This acknowledgement can be hard to cope with but remember this; you do not need people like that in your life. If someone cannot accept you for both the good and bad – they do not deserve to be in your life. A true friend and real family will never walk out on you. They will never degrade you and they will never talk down to you. You DESERVE better than that. You WILL find new friends and new support – you may become closer to some people who were originally distant. With every person who walks out, a new person will walk in. You deserve nothing but the best; remember that.

  • Friends that leave and want to return: On occasion this may happen; a good friend might take a hiatus and come back into your life expecting you to welcome them with open arms after they left you at a low point. I will say that I cannot counsel you on what to do – this is a personal decision. What I will say and recommend is you have an open conversation without judgement and keep an open mind. Everyone copes differently. Perhaps they rethought their actions or maybe they came to a point of acceptance. It is hard and difficult decision to make; but everyone copes differently. It is entirely your choice to let this person back into your life and no one should ever judge you for the decision you make.

Strength, Courage, & Positivity

 Another subject that may sound rather silly but does help a lot is staying strong and courageous throughout your journey as well as keeping a positive attitude. While you should do these things for you own self-acceptance – it promotes social acceptance as well. When someone can see that you have a control on your feelings towards Epilepsy – it gives them comfort and gives them courage to take on this journey with you. No one else can experience Epilepsy the way you do and everyone will experience it differently. If you can take it on with a positive attitude; it will attract the masses and give them strength and courage to stand beside you as well as give them hope. As a family member, friend, or caregiver – it can be hard to stay positive at times; especially when you are witnessing low points of someone you love. But the positivity you have held all along will shine through another person when you cannot keep your head up on those low days. You will have encouraged and built a strong support system on pure strength, courage, and positivity.

Social Acceptance

While the journey may be tedious and may have to be restarted with every new social situation – it is worth every step. You will find out the strength of your support system, friends, family, and caretakers. You will begin to understand others better and on a different level than before. You will also meet new friends and extend your support system. Each day, you will begin to knock the walls down of the stigma that surrounds Epilepsy and Seizure Disorders. With every step you take, you are one step closer to not only helping yourself, but everyone around you and the Epilepsy and Seizure Disorder community as a whole. You are a warrior. You are a fighter. It may be tedious – but you will get to where you need be. Promise.


Never Let Anything Stop You

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Here are some of my accomplishments despite the stigma and despite Epilepsy

  • Top left: I got accepted into a Leadership program at my college
  • Middle Left: I was a volunteer at a pediatric oncology clinic and became camp counselor at a pediatric oncology camp
  • Bottom Left: I currently work at a local hospital
  • Middle: My little family – my two beautiful girls and loving partner
  • Top Right: I was inducted into Sigma Theta Tau International – a nursing honor society
  • Middle Right: My first love will always be music. This year I finally had time to get back into it with a help of a close friend. I currently play French Horn for a local Portuguese Band
  • Bottom Right: I am senior in a BSN program to become a RN

Share your thoughts and your accomplishments! Together, let us knock down the walls of stigma and become one step closer to social acceptance

 

Relationships and Epilepsy

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My Experience

“Five years with Epilepsy, you must of went through a lot!” You are right, but not in this department. I have had two relationships from my diagnosis till now and hopefully no more (hint hint, haha). Relationships can be hard and difficult for the average person, but what about dating someone with Epilepsy?

When I first got diagnosed with Epilepsy, it was the right before the start of a new relationship. I was struggling to accept the diagnosis at this point, hiding it from everyone I could and only telling those who had to know. So when I started dating this new fellow, I was not sure what to say or how he would even react. Well good thing for me I did not have to tell him; I actually had a tonic-clonic seizure right in front of him within a week of dating. Thankfully, he kind of knew what to do and we were at his house with a few mutual friends. I eventually came to and I still remember how pale his face was. I must have had a dazed look as I struggled to recognize the faces around me. He started pointing to our friends asking their name and then pointed to himself and I remember yelling out “some dude that I’m dating…I don’t know, I can’t remember, but I know I am dating you” (this became a running joke between us for a while). The next morning, we had a little chat about Epilepsy and my seizures. He was intrigued and concerned, but reinforced me that it was okay and he wished I told him sooner. He willingly drove me to and from work so I could keep my job, let me sleep at his house so it would be a shorter drive and I could have more sleep, and wrote me notes every day when my memory started to fail me. Now I cannot say he was always this sweet. Eventually the epilepsy became a common occurrence before it was under controlled. Side effects from the medication had put stress on our relationship as well as welcoming two children. The pregnancies actually triggered seizures as well as stopped my seizures and that was a terrifying and stressful time. We eventually went our separate ways for very good reasons. Although, one reason on my behalf involved my Epilepsy but that is a story for a different time.

Now with my second and current relationship, things were little different.  I was now a single mother with Epilepsy and in college. To me, I felt like this was already a lot of baggage to be bringing someone. I was always very open and not afraid to tell people I had children at the age of 22. I told him that right off the bat without a care. They were my world. But when it came to epilepsy I hesitated. He already took one suitcase, can he really take another? My seizures were controlled at the time and not frequent. When I went to tell him I made sure to emphasize that part and he was not fazed by it. He told me how he had family in the medical field and he actually went into telling me about his medical problems. It was actually really nice and he made me feel accepted.  It was a while into dating before I had a friendly reminder that I have Epilepsy, but it occurred in my sleep while we were apart. I dreaded telling him but I did the following day. He asked if the girls were okay and told me we would have a relaxing weekend together. A few months later I had another nocturnal, I had always had my myoclonic jerks, and then I finally had my typical tonic-clonic seizure while bathing the girls. This is when he started to really worry.  He worried with the others too and with every jerk, but the severity of the tonic-clonics and the what-ifs worried him more. This was his first experience with my typical seizures. I went on to having a nocturnal again the beginning of this year and he begged me to get a new neurologist as I was fighting to see the one I had at the time. Eventually the next tonic-clonic hit and sent me into a brick wall. That was it for me. I went right to a neurology clinic and got seen the following week.

Now this has put some stress overtime on our relationship. He was constantly worried about me as I still had driving privileges prior. He would be sure to text me and I would be sure text him that I was okay and made it to where I had to go. He would call me every night and every morning. He told me about the day I crashed my car a little later; “I didn’t hear from you that you got to your friend’s house and I started to worry, but then I told myself ‘she’s probably busy studying, she’s always alright’ and you weren’t. I still feel awful. I love you” and tears fell from both of our faces as I never truly understood he was so worried. I typically try to push Epilepsy to the back of my mind. It was not until my pediatric rotation I started to be a little more open and it was not until the accident that I truly stopped caring about judgement with coming forward. This is our reality and people needed to know.


My Boyfriend’s Perspective

You having Epilepsy did not bother me, that does not make you any different. I think the hardest part is the side effects of the medication; I noticed the difference as soon as you started them. It can be stressful. Yeah, I worry every day that something is going to happen to you or that could potentially die; but I know that can be avoided. With the medication, I do not know how to help you with your side effects. I am not sure what to do sometimes. Epilepsy itself does not make you different.


So what do I do?

Be honest – First and foremost always be honest, and tell them BEFORE a seizure happens. If they truly love you or want to be with you, they will want to be with you no matter what. If their opinion changes of you after you tell them you have epilepsy, do you really want to be with someone like that? You deserve better, much better, and there will be better out there for you. You do not need someone like that in your life.

Take the time to explain – Do not just walk up to your partner or potential partner and tell them you have Epilepsy and walk away. Sit down with them and explain to them the type of seizures, the frequency, what they should do for you, and what the medication you take is and potential side effects from them. This will help alleviate their stress and give you a peace of mind. Also, if you ever had a seizure in front of them they would be well prepared in knowing what to do and this could help give them a sense of confidence about your condition. I know it may sound overwhelming but honestly if they are a good person and are right for you, they would listen because they care.

Do not settle – I did not quite mention this but there was a point in my first relationship where I settled. I literally said to myself “who else would want me, I have Epilepsy.” I had a hard time accepting the diagnosis myself and did not have very good experiences with telling others. I felt like no one would ever accept me, so how could they possibly attempt to love me. But trust me, they will, someone will – I promise.

Take care of yourself – Sometimes we do need help, other times we do not. But knowing a seizure could happen without warning can be a stressor for both of you. Be sure to take care of yourself first! Take your medication, avoid triggers when possible, go to your regular appointments, and be on top of your care. This will allow your partner to relax and let you relax too knowing you are doing your very best to prevent a seizure from occurring.

Do not let Epilepsy stop you – Do not feel like you are any less deserving of dating or a good relationship just because you have Epilepsy. You can still go out, you can still enjoy yourself, and you can still enjoy the company of others. You are just the same as everyone else – you are beautiful, you are deserving, and you are amazing.


But wait, when do I tell them?

There is no set time limit on when to tell someone and this varies depending on yourself and when YOU feel comfortable. For me, the first time I was in denial – I probably would have waited a long while before telling him if my Epilepsy did not beat me to it. For my second relationship, I figured I might as well lay it all out on the table. At this point I learned if someone could not accept me for all of me, then I deserved better. I told him in the very beginning – perhaps even at our first date – that I had Epilepsy.

Remember, it is entirely YOUR choice when you tell someone. It is not an easy topic for some to talk about but do keep in mind it also may affect your partner the longer you wait. Just know that no matter what, they will still care for you and love you. They will also be mindful of your feeling about the topic. And if they do not, then take the advice a friend once gave me from a picture she had found:

“Some people will only love you as long as you fit in their box. Don’t be afraid to shove that box up their —”

(well, you get the idea)

Dealing with the Diagnosis

“You have Epilepsy.”

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This can be pretty devastating to some people. Most people do not understand the weight of the words unless they have been directly impacted. For me personally, I will never forget that day. The same epilepsy I watched my brothers go through for years, just in a different form.  My first neurologist told me I should rethink having children in case Keppra did not work and because of the type of seizures I have. He told me since I could not figure out my triggers and neither could they that I would have to be careful in everyday life. This also added to his rant about having children because the stress of labor could cause me to have a seizure and there is a potential of me losing my life. He also told me my chances of getting pregnant would be harder – but this was back when not much was available on Keppra.

I was devastated when I got this diagnosis. I knew things would change. My friendships changed, the relationship I was in at the time changed, how coworkers treated me changed…everything changed. Some for better and some for worse. I denied the diagnosis for a while thinking it was a mistake. When the seizures did not stop and the dose kept increasing I learned to accept it. This was my new reality. I hoped every night I would grow out of it, but that was not the case. The neurologist said I would be on medication for the rest of my life and so did the second.

I cannot tell you how to cope, we all cope with things differently. But I can tell you this, it gets better. The hardest time is always the initial moment of the diagnosis and trying to find the right mix of medication to slow the seizure activity. I went through a medicated coma and a Keppra overdose before my tonic-clonic seizures were under control. I was having myoclonic jerks every day since high school and only now am I just finally having that be taken seriously as they are probably seizures – thank you to my third and hopefully final neurologist. But things it did get better.  I might have to do things a little slower or take more time out to accomplish a task, but I can do them – and so can you.


Do not be afraid to reach out and ask for help. This was something that took me years to learn but better late than never. You will meet people who are fighting the same battle or who are farther along on their journey and these people can truly help you out. Do not be afraid to ask family and friends to help you because most of them will. I will not tell you it did not feel degrading at times or like you are losing your independence, but you will gain it right back. You just need some tender love and care and some time to focus on you. And that is okay.

Never compare your journey. Some people may have seizures more frequently than others and some may not. Some seizures come in different forms but they are still all part of epilepsy. Everyone has their own battles and each battle makes you stronger. Do not forget that epilepsy is more than just seizures. Epilepsy is the side effects from medication, constant doctor appointments, EEGs, missed arrangements, everyday stigma and so on. We are all in this together. Never feel like because you do not have it “as bad”, that you do not truly experience epilepsy. You do, just in your own way, in your own form, and you are brave for that.

It is okay to not feel okay. We go through emotions. We deal with setbacks. Sometimes our medication goes up and it feels like we are moving backwards. We have a seizure for the first time in years and it feels like you are back at square one. It is okay to feel that way. There are people here for you that will help you get through that. Your medication went up? That means you are a step closer to having your seizures more controlled. You went a year without a seizure, then had one? That means something is working and maybe you can identify a new trigger from it. Try to look at your positives, but take the time to feel upset. This is part of your journey and no matter what you will keep moving forward.

Advocate. Whether it is for yourself towards a doctor or treatment plan, starting a blog/vlog, going to events; do not be afraid to speak up and never be afraid to advocate yourself. Remember: you are your own best advocate. Everybody has a story, an experience, and every one deserves to be heard. This may help someone who is new or someone who is in the same situation as you. This could mean the difference of getting proper or improper care. This could mean helping in research and education This can be scary and this can take time to get into, but this is something to think about. Nobody will ever know epilepsy and seizure disorders better than you. Be heard; you deserve to.


Always remember:

 You are not your illness; you are not epilepsy. You are you. Epilepsy is just a small part of who you are and what makes you, you.


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One wish

“What is one thing you wish people could understand about your epilepsy?”

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One thing I wish people could understand is that the medication can be just as bad as having epilepsy. Antiepileptic Drugs (AEDs) help reduce the probability of a seizure occurring by reducing and alternating the excessive electrical activity (or degree of excitability) of neurons. Note that different AEDs work in different ways and have  different effects on the brain. Some AEDs may affect how neurotransmitters send messages or how fast the connection is. The medication I am on currently, as many of you may know, is levetiracetam/Keppra. The best part about Keppra is that they have NO idea how exactly this medication works on the brain – but it does not behave like a typical AED. All they know is that it forces brain cells to fire more slowly to prevent a seizure from occurring. Keppra is still, in comparison, fairly new and still needs more research.

Since my AED slows the brain down completely, I feel this is why my memory and comprehension is so greatly affected. It takes me a while now to understand things and this becomes extremely frustrating. I have trouble recalling things which can become embarrassing. I also have issues with getting words I want to say from my brain to my mouth – granted I did have two (well, three I suppose) events to the head that were considered traumatic and this could be why – I still feel that Keppra may be more to blame. I also wish people would understand that the brain fog we feel is real and comes along with AEDs and Epilepsy.


What is Brain Fog?

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       Brain Fog is not a medically used term, but does sum up what most of us feel from time to time or on an everyday basis. Symptoms usually include: irritability, low energy or fatigue, trouble concentrating, forgetfulness, memory problems, anxiety, confusion, low motivation, mild depression, and trouble sleeping at night. I can definitely vouch and say I feel this way daily but not everyone will. AEDs effect everyone differently but it is good to research and know what to expect. Is it manageable? Yes, for some people. You just need to give yourself time and make proper accommodations. But if you feel that this is unmanageable, talk to your doctor. There may be an underlying cause or a better solution.


Stop and Think

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       Before you start bantering at someone who is taking longer than normal to speak, write, or do a task. Stop and think. Do you see a medical alert bracelet? Do you know this person personally? Haven you had a conversation with them? They might be someone with epilepsy or they might be someone with an illness or disorder that cause similar symptoms to the ones listed above. Please remember to be patient with people; for we all have our own journeys and battles that go unnoticed.

 


More Information

For more information or information on your specific medication, check out:

Feel free to leave comments on your experiences or about how AEDs effected people you know, love, or care for