Day 5 Nov. 5th WEGO National Health Blog Month
BONUS PROMPT: Traveling with Epilepsy
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If you enjoy my blogs and articles, please nominate me! Only takes a second! CLICK HERE TO NOMINATE ME!!! #HAAwards #NHBPM
If you're working while you're at the beach, is it still really a "vacation"? I have always wondered that. One person traveling with Epilepsy requires the effort of many. Whether it's a bus or a plane, a car or a train, a ship or just walking down the street! It's never easy, and it's a 24 hour job. People with Epilepsy rarely get the chance to rest, because it is constant preparing for the next disaster.
Not to sound negative, or anything... But that's just what we do. We have to.
My boyfriend, Rafael, recently left to A&M University to be in their Air Force ROTC. Since I am awaiting my brain surgery in January, that means I stay here patiently like a dog until he comes home every month or two for the weekend. However, about two months ago, I decided to take my first trip alone to go see him. He goes to school three and a half hours away, so it isn't too far if you drive. Having Epilepsy, you usually don't drive. I don't.
My father and mother are constantly working, and nobody (not even myself) trusts my sister to drive that far on her own. Texas is a state full of crazy drivers, and I don't mind saying it. Therefore, I had to take a Greyhound bus. So much fun! (Hah. Not.) The trip there was 12 hours long, and 8 hours back. How 3 hours and 30 minutes turned into half a day - I can't tell you. Greyhound really needs to figure out their track, though. Anyhow, the trip required delicate planning by my family, myself, and Rafael. Afterall, I would be totally alone for a total of 20 hours in strange cities at odd hours of the morning.
Therefore, this trip - lasting a total of 5 days - would take quite a bit of planning. Being a person with Epilepsy means you must be ready for anything and everything to go wrong...
What if I accidentally leave my medication at home?
What if I forget to take my medicine on time?
The bus stops twice, so that means I'll be awake all night - won't that much lack of sleep give me a seizure?
Who will I call if I need to go home early?
What if my cell phone dies while I am on the bus?
Mum and dad will worry themselves to death if I don't call every few hours...
Who do I know that could come get me if an emergency happens?
What will I do if I feel like I might have a seizure on the bus?
Who will take care of me if I have a seizure on the bus?
What if I end up in the hospital?
These are the types of worries and thoughts that run through your head as the person traveling with Epilepsy... But I assure you, these aren't even slightly near half of the worries you'd have. To somewhat calm these worries I have made a checklist of things to do and carry when I travel.
1. Research the area extra carefully - Look around online at your destination, and your stops along the way. What are the local hospitals? Where can you order your medication if you accidentally forgot it at home? The list of hospitals is good for me because I can get a good idea of where I'll be in case of an emergency. I usually copy and paste the addresses/numbers/website into a document on my mother's laptop so that she can look for it in case of an emergency and know were to find me. It's much faster than having to look up the destination after hearing where I am from some busy nurse in the ER. I use CVS Pharmacy, so I call ahead of time and ask if I can transfer prescriptions in case of an emergency. Some locations do not allow a transfer, which is why I call ahead.
2. Book your hotels accordingly - Don't spend too much on a room because you need extra cash in case of an emergency. This goes for all types of emergencies. Maybe you need to run to the drug store for some Pepto-Bismol, or maybe you forgot your Ativan and need to transfer your prescription to another pharmacy and pay for it. A friend of mine has a son and daughter with Epilepsy and always books hotels near hospitals to avoid any sort of delay in case of a seizure emergency. So that is another thing some may wish to keep in mind.
3. Prepare your wallet - Never travel unless you have more than enough cash. "Just enough" is not enough simply because things change, and things go wrong. That's what this article is about, right? Make sure you have insurance cards, credit cards, personal identification, and any other type of card/ID you may need with you. One of my most important rules is to ALWAYS, always, always carry a $20 bill (or more, that's fine) that you save specifically for emergencies. This way, if you forget or lose your credit card, run out of money, need some Tylenol from the store, or need to make an emergency phone call, you're covered! This special $20 bill has saved me at least 5 times in my life, and it is one of my most important travel rules.
4. Set reminders - When traveling alone or with family, I always set reminders on my cell phone and iPad (both) three times a day to remind me to take my medication. This last trip was off-the-clock (at odd hours of the morning) so 5:00pm felt more like 10:00pm, and 6:00am felt more like noon. Setting the alarms helped my body stay on track with medication, and kept my mind sharp for what time it really was. Missing doses of medication can cause seizures within a three hour window for me.
5. Medication checklist - I always make sure I have every medication with me when I travel. Even if it's one that I only use "sometimes" such as a pain killer or Ativan (emergency anticonvulsant). Since you always seem to need things when you don't have it, it's better to bring it along. As I mention in many of my blogs, I have Status Epilepticus during my Tonic-clonic seizures, and Ativan is absolutely necessary for every single Tonic-clonic to avoid death. So it is always on me! In my purse, pocket, luggage, family car, and at home! Also make sure that you have enough medication to last you a week more than you need. Layovers, broken tires, storms, etc. happen and you need to be prepared for your trip to last longer than you think.
6. Setting up an emergency plan - There must always be an emergency plan, especially when you travel alone. You want to talk to your family or loved ones and discuss what they will do if a seizure strikes (or some other emergency), how you will get back home, etc. Some good things to keep in mind are:
- Who will come to get you in case of an emergency? Make sure that person lets their boss know they may possibly need to leave if something happens.
- Make sure that your family knows your entire route. Where are all of your stops? What bus/plan/ship/etc. are you taking? What is your destination? Where is your hotel? What room are you staying in? What time are all of your stops and when do you leave? Have all of this written down before you leave anywhere.
- Update loved ones regularly. If you had a change of plans due to a layover, text your family and let them know you're stuck at the airport overnight.
- Medical Alert Gear is a must with Epilepsy. I prefer either ScanMed QR or Mediband Plus. Two wonderful companies with gear that can ensure you get correct treatment. When you have Epilepsy, it is always best to carry something that lets people know you have Epilepsy right away. Whether it's card around your neck that says "This person has Epilepsy" or a medical bracelet with "EPILEPSY" in bright red, bring it with you!
7. If you're sick, the trip is off .- When you have a cold you are more likely to have seizures too. The worst mistakes I have ever made involved going on vacation when I had what I thought to be a "tiny cold". The idiot teenager inside of me said "It's spring break! You'll get over it in a day or two!" It ended up with me vomiting in the hotel room and having seizures the whole trip. If you're sick, tell your aunt and uncle to make the bed in the guest room because you won't be accompanying mama and papa this time!
8. Make sure you have opportunity to rest. If you've been up all night, plan to sleep 6 hours when you arrive to your destination. You must, must, must make up for all lost sleep or your seizures will take you over when you least expect it.
9. Leave no loose ends. Start planning early (this means NO last minute vacations with the girls!!!) and plan well! Unless the trip is planned out from start to finish, it's probably not a good idea. If you think "Hmmm... Not really sure if I'll have cash for day #3, but I can figure that out later right?" then that should be a BIG RED FLAG that you need to just say no and stay home, or figure out a better way to spend.
10. Teach others around you what to do in case you have a seizure. This means strangers, too. Better make friends with that weird guy sitting next to you on the plane, because he might end up saving your life! Introduce yourself, shake their hands and let them know you have Epilepsy. Sometimes it's easier to type up a list of what to do, print it out, and hand it to them when you meet them.
11. Avoid being alone as much as possible... Especially in a strange place. You don't know how dangerous it is to have a seizure on your own until you've seen a man being robbed as he convulses on the ground at a bus station.
12. Keep identification and medication on you at all time. If you're a girl, make sure you have everything in your bag and take it everywhere with you. If you're a guy, it's harder since you don't carry purses. However, backbacks work just fine! It may be a tight situation where you can't have a bag at all times. If that's the case, get a miniature pill container and put about two doses of each of your medications inside and/or your emergency seizure medication (Ativan, Lorazepam, etc.) and don't forget your wallet!!! This way people know who you are if they find you having a seizure or unable to speak.
That's not the entire list of things I have to do when traveling, but those are some of the most important steps I must remember to take. It's never easy to travel with Epilepsy. However, after you have done it a few times you learn to deal the same way I have. You can still have fun and enjoy yourself, you just have to prepare for anything at all times. That's why I say "Disaster Planning," instead of "vacation planning"!
Sounds about right, eh?
ALSO - check out the fan pages for tons of cool stuff this month!!! This includes giveaways, cool facts to share with friends, fun Facebook gear to show your advocacy and/or support for others, and much, much more!!! And PLEASE - don't forget to send your awareness month photos to MandyKrzywonski@EpilepsyBlogger.org so you can be on the blog!!!
My boyfriend, Rafael, recently left to A&M University to be in their Air Force ROTC. Since I am awaiting my brain surgery in January, that means I stay here patiently like a dog until he comes home every month or two for the weekend. However, about two months ago, I decided to take my first trip alone to go see him. He goes to school three and a half hours away, so it isn't too far if you drive. Having Epilepsy, you usually don't drive. I don't.
My father and mother are constantly working, and nobody (not even myself) trusts my sister to drive that far on her own. Texas is a state full of crazy drivers, and I don't mind saying it. Therefore, I had to take a Greyhound bus. So much fun! (Hah. Not.) The trip there was 12 hours long, and 8 hours back. How 3 hours and 30 minutes turned into half a day - I can't tell you. Greyhound really needs to figure out their track, though. Anyhow, the trip required delicate planning by my family, myself, and Rafael. Afterall, I would be totally alone for a total of 20 hours in strange cities at odd hours of the morning.
Therefore, this trip - lasting a total of 5 days - would take quite a bit of planning. Being a person with Epilepsy means you must be ready for anything and everything to go wrong...
What if I accidentally leave my medication at home?
What if I forget to take my medicine on time?
The bus stops twice, so that means I'll be awake all night - won't that much lack of sleep give me a seizure?
Who will I call if I need to go home early?
What if my cell phone dies while I am on the bus?
Mum and dad will worry themselves to death if I don't call every few hours...
Who do I know that could come get me if an emergency happens?
What will I do if I feel like I might have a seizure on the bus?
Who will take care of me if I have a seizure on the bus?
What if I end up in the hospital?
These are the types of worries and thoughts that run through your head as the person traveling with Epilepsy... But I assure you, these aren't even slightly near half of the worries you'd have. To somewhat calm these worries I have made a checklist of things to do and carry when I travel.
1. Research the area extra carefully - Look around online at your destination, and your stops along the way. What are the local hospitals? Where can you order your medication if you accidentally forgot it at home? The list of hospitals is good for me because I can get a good idea of where I'll be in case of an emergency. I usually copy and paste the addresses/numbers/website into a document on my mother's laptop so that she can look for it in case of an emergency and know were to find me. It's much faster than having to look up the destination after hearing where I am from some busy nurse in the ER. I use CVS Pharmacy, so I call ahead of time and ask if I can transfer prescriptions in case of an emergency. Some locations do not allow a transfer, which is why I call ahead.
2. Book your hotels accordingly - Don't spend too much on a room because you need extra cash in case of an emergency. This goes for all types of emergencies. Maybe you need to run to the drug store for some Pepto-Bismol, or maybe you forgot your Ativan and need to transfer your prescription to another pharmacy and pay for it. A friend of mine has a son and daughter with Epilepsy and always books hotels near hospitals to avoid any sort of delay in case of a seizure emergency. So that is another thing some may wish to keep in mind.
3. Prepare your wallet - Never travel unless you have more than enough cash. "Just enough" is not enough simply because things change, and things go wrong. That's what this article is about, right? Make sure you have insurance cards, credit cards, personal identification, and any other type of card/ID you may need with you. One of my most important rules is to ALWAYS, always, always carry a $20 bill (or more, that's fine) that you save specifically for emergencies. This way, if you forget or lose your credit card, run out of money, need some Tylenol from the store, or need to make an emergency phone call, you're covered! This special $20 bill has saved me at least 5 times in my life, and it is one of my most important travel rules.
4. Set reminders - When traveling alone or with family, I always set reminders on my cell phone and iPad (both) three times a day to remind me to take my medication. This last trip was off-the-clock (at odd hours of the morning) so 5:00pm felt more like 10:00pm, and 6:00am felt more like noon. Setting the alarms helped my body stay on track with medication, and kept my mind sharp for what time it really was. Missing doses of medication can cause seizures within a three hour window for me.
5. Medication checklist - I always make sure I have every medication with me when I travel. Even if it's one that I only use "sometimes" such as a pain killer or Ativan (emergency anticonvulsant). Since you always seem to need things when you don't have it, it's better to bring it along. As I mention in many of my blogs, I have Status Epilepticus during my Tonic-clonic seizures, and Ativan is absolutely necessary for every single Tonic-clonic to avoid death. So it is always on me! In my purse, pocket, luggage, family car, and at home! Also make sure that you have enough medication to last you a week more than you need. Layovers, broken tires, storms, etc. happen and you need to be prepared for your trip to last longer than you think.
6. Setting up an emergency plan - There must always be an emergency plan, especially when you travel alone. You want to talk to your family or loved ones and discuss what they will do if a seizure strikes (or some other emergency), how you will get back home, etc. Some good things to keep in mind are:
- Who will come to get you in case of an emergency? Make sure that person lets their boss know they may possibly need to leave if something happens.
- Make sure that your family knows your entire route. Where are all of your stops? What bus/plan/ship/etc. are you taking? What is your destination? Where is your hotel? What room are you staying in? What time are all of your stops and when do you leave? Have all of this written down before you leave anywhere.
- Update loved ones regularly. If you had a change of plans due to a layover, text your family and let them know you're stuck at the airport overnight.
- Medical Alert Gear is a must with Epilepsy. I prefer either ScanMed QR or Mediband Plus. Two wonderful companies with gear that can ensure you get correct treatment. When you have Epilepsy, it is always best to carry something that lets people know you have Epilepsy right away. Whether it's card around your neck that says "This person has Epilepsy" or a medical bracelet with "EPILEPSY" in bright red, bring it with you!
7. If you're sick, the trip is off .- When you have a cold you are more likely to have seizures too. The worst mistakes I have ever made involved going on vacation when I had what I thought to be a "tiny cold". The idiot teenager inside of me said "It's spring break! You'll get over it in a day or two!" It ended up with me vomiting in the hotel room and having seizures the whole trip. If you're sick, tell your aunt and uncle to make the bed in the guest room because you won't be accompanying mama and papa this time!
8. Make sure you have opportunity to rest. If you've been up all night, plan to sleep 6 hours when you arrive to your destination. You must, must, must make up for all lost sleep or your seizures will take you over when you least expect it.
9. Leave no loose ends. Start planning early (this means NO last minute vacations with the girls!!!) and plan well! Unless the trip is planned out from start to finish, it's probably not a good idea. If you think "Hmmm... Not really sure if I'll have cash for day #3, but I can figure that out later right?" then that should be a BIG RED FLAG that you need to just say no and stay home, or figure out a better way to spend.
10. Teach others around you what to do in case you have a seizure. This means strangers, too. Better make friends with that weird guy sitting next to you on the plane, because he might end up saving your life! Introduce yourself, shake their hands and let them know you have Epilepsy. Sometimes it's easier to type up a list of what to do, print it out, and hand it to them when you meet them.
11. Avoid being alone as much as possible... Especially in a strange place. You don't know how dangerous it is to have a seizure on your own until you've seen a man being robbed as he convulses on the ground at a bus station.
12. Keep identification and medication on you at all time. If you're a girl, make sure you have everything in your bag and take it everywhere with you. If you're a guy, it's harder since you don't carry purses. However, backbacks work just fine! It may be a tight situation where you can't have a bag at all times. If that's the case, get a miniature pill container and put about two doses of each of your medications inside and/or your emergency seizure medication (Ativan, Lorazepam, etc.) and don't forget your wallet!!! This way people know who you are if they find you having a seizure or unable to speak.
That's not the entire list of things I have to do when traveling, but those are some of the most important steps I must remember to take. It's never easy to travel with Epilepsy. However, after you have done it a few times you learn to deal the same way I have. You can still have fun and enjoy yourself, you just have to prepare for anything at all times. That's why I say "Disaster Planning," instead of "vacation planning"!
Sounds about right, eh?
ALSO - check out the fan pages for tons of cool stuff this month!!! This includes giveaways, cool facts to share with friends, fun Facebook gear to show your advocacy and/or support for others, and much, much more!!! And PLEASE - don't forget to send your awareness month photos to MandyKrzywonski@EpilepsyBlogger.org so you can be on the blog!!!
(EVERYTHING EPILEPSY!)
(For mothers, fathers, aunts, uncles,
grandmas, grandpas, nieces, nephews, step-fathers, step-mothers,
daughters, sons, step-daughters, step-sons, friends, best friends,
wives, husbands, couples, and so on! Even singles!!!)
(Hopeful words, videos, music, and more to brighten up your day!)
Loved ones of those with Epilepsy also welcomed.
Topics posted each week by Mandy (EpilepsyBlogger).
All ages!
God bless,
Mandy Krzywonski
(EpilepsyBlogger)
I love your blog. Its really informative. I have been epileptic for 12 years. They thought I had a brain tumor since I wasn't diagnosed until I was 28 years old. You make me think of things that I wouldn't have thought of on my own. Thank you and keep up the good work. BTW I found your blog from your facebook page.
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