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Traveling With Epilepsy, Is Not For The Faint At Heart.....

Time To Prep For Leaving Home

In my previous blog I mentioned I was not doing well and needed to take a break from blogging to focus on my family, it was much needed. Thank you to all that reached out to check on me via DM on Twitter, texts or on here. It is always greatly appreciated.

What many don't realize when I leave home it is exciting and stressful all at once. I always make sure I get the house in as good as shape if possible, so I don't have to do this when we get back.

I then make a packing list for potential things that I need, due to my memory I often forget little things so a check off list is helpful. Yes, I know many of you are saying, that is no different vs a "normal" person, but it is very differnt list.

A sample list for me:

1)List of all my pills and check the bottles that there are enough for time frame gone and extra in case I end up being gone later(this includes vitamins, IBprofen for my other conditions etc.) Any allergies as well to meds/interactions. (no matter what I need to have pills with me and NEVER place in a checked luggage)

2)Emergency med to take as needed for cluster siezures, whether it happens at night or throughout the day/night

3)A printed list for my family members to have with them/also one in my pill bag to have on hand with name of medication, and time I take them. Just in case I cannot remember or having seizures, and need assistance by anyone. Also on this list, I have list of emergency contacts for anyone. I also print on there an emergancy Seziure Plan, for my type of seizures as they are not typically visible as convulsive seizures are. Especially when my husband is not with me, people need to be aware. (this needs to be told to whomever I am going to be with where all is located at)

4)Seizure Journal along with my RNS laptop to log anthing that happens and collect data daily multiple times. These need to be with me at all times, as we may be out and about and miss my scheduled data gathering and or need to log something different that occured. Before travel, need to let my nuerologist know that I am traveling and data will not be sent until I return home.

5)Water bottle and a bar/some type of easy food. Kind of like how I did for my boys when little:) It is important to stay hydrated and have something to take with pills. Dehydration is a common cause for seizures

That's just a start....I think you get the picture though.

Disrupted Schedule Can Bring On Seizures

This is a difficult one for me. We typically are traveling in and out of time zones which can really throw my internal time clock off. My neurologist has told me that I can take my meds within a hour of my normal scheduled timeframe and if not traveling for a long period of time, try to stay at my time zone when possible. I have a scheduled "rest time" daily, a regimen "bedtime" too. When I travel this is not always possible due to plans, flight times etc. Mentally I need to prepare myself that if I am not doing well, I might have to stay back when possible to avoid more seizure activity. I often feel guilty, but I am getting better at listening to my body and or my husband.:)

When I Return Home

I always want to do laundry right away for us, water indoor plants, pull weeds as I have OCD on some things to get done immediately. I also want to exercise to just feel better, but I should probably just do meditation only. I need to remind myself that my body and brain need to rest first to recover from traveling which might mean I need to sleep and or just try to relax a couple of days, don't try to do all things at once or else the darn GLITCH will happen. This definitely one I am still working on, I don't like to not have things in order.

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Jun 15, 2023
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Oh my goodness!! John is the same when we get home, he has to unpack and immediately start laundry.

I’m glad you have systems in place that work for you and are learning to give yourself more grace when you have to go off-schedule.

Hope you are feeling better!

Marissa DeVaul Parmer
Marissa DeVaul Parmer
Jun 15, 2023
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Lol 😂 I guess it’s in the jeans. When things are not in place I tend to feel anxious but I am working on it. thank you I am doing ok. Looking forward to my Mayo visit end of month to hopefully get some next steps.

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