Chronic Illness and Conventions, Part Two: Have a Plan for the Unexpected

Yay, part two of the Chronic Illness and Conventions series! Remember, this is not only relevant to conventions, and can be applied to any situation when you are not at home and among strangers. Theme parks, concerts, whatever!

Here is the link for part one, in case you missed it.

Part two is all about Planning. Planning for the unexpected, having a plan for anything related to your chronic illness. Here are some examples:

  • A person with diabetes will have insulin/glucose tabs/snacks on hand.
  • Someone with a chronic pain illness (fibromyalgia, lupus…) will have a walker or cane if their pain can reach that point. Maybe they will have pain medications within easy access.
  • Asthmatics keep a rescue inhaler nearby.
  • Someone with extreme allergies will have an epi-pen on them.

Now, I know what you are thinking, Duh, Silly Rabbit! Of course they will have their supplies with them! I know that. The point of this post is not “don’t be irresponsible,” it’s “have a plan.”

The reason that I am having a full post in this series about having a plan and dealing with the unexpected is because it is seriously important. Now, in my experience with working with conventions in both hotels and convention center venues, there will always be resources available. Security teams from the event and the venue, as well as local police, and medical personnel is required by many (not all) venues during large events (like the popular dances at conventions). They are there to help you if you see something (like possible shoplifting or harassment), need something (like you locked your keys in your car or lost something), or in case of an emergency. These resources vary by event and by venue, so if you have any concerns, feel free to email the event staff in advance, and they can tell you which will be at their event.

Now, I cannot stress enough that while they are there to help you and keep everyone at the event safe, they have to keep everyone at the event safe. This could be thousands of people. They are not there to focus on any one individual. That could prove unsafe for the other patrons present. Now, don’t get me wrong, if there is an emergency, that emergent case is paramount and will be the main focus. However, if I have a migraine, I don’t expect them to bend over backwards and allow me to camp out wherever I please until I recover.

That is my responsibility.

This, of course, does not apply to anything that falls under the Americans with Disabilities Act (ADA). If you have any concerns about service animals, wheelchair accessible areas, etc, feel free to contact the event staff! They will be more than happy to comply! With this in mind, if you have some sort of necessary accommodations that fall under ADA guidelines, contact the event staff and ask about such specific accommodations in detail. The people who run conventions and other such events are not psychic and cannot predict every individual need for every possible disability that may or may not be present at their event. For example, if you suffer from Epilepsy or seizure disorders, you may want to ask about what lighting is used in the dances, and if they have a policy about strobes. As someone with Chronic Migraine, I struggle with strobe lights, but when I am managing the Main Events room at Omni, part of the schedule includes a rave-style dance. Typically, strobes are a staple. Since this is usually the last event of the night, I can get away with slipping away not long after it starts (a perk of having one of the co-owners of Omni be the DJ and Tech Chief!). I don’t expect him to not use strobes in my presence, or to make the music softer while I am there. I make myself scarce and go to bed.

omniexpo2015

Friends dance together during a rave at Omni [Fandom] Expo in 2015. I have seen several occurrences over the years of friends looking out for each other over the course of a con weekend.


❄️Note: Omni is a unique event. DJ Shadowfax hosts a signature event called The Blackout Rave where strobes are a common accent. Since he has many friends who have seizure disorders and since I have Chronic Migraine and photophobia, he starts the event with a “strobe-free” period. This is a special case, and should not be expected at every event! This is his choice!

Just remember that it is your responsibility to know what is in store at an event!

Now, back to the planning! You should be prepared in case of practically any circumstance.

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A Relaxing Bath to Find a Break

I have mentioned in a previous post, I like to take a hot bath during a migraine attack to find some relief. In that post, I said:

I fill the tub with water as hot as I could stand it, get in, and put my cold compress on the back of my neck or my forehead. While this relief sometimes lasts only as long as I am in the tub (typically during an extreme attack), it can give a good reprieve.

I was inspired to do this by stumbling across a pin on Pinterest. I tried it as the pin says, only with a gel ice pack on my neck instead of frozen peas, but I found that precariously perching a clumsy rabbit on a small bathroom counter whilst in the throws of a migraine attack was not the best idea.

And I already get anxious and woozy when climbing ladders and around heights in general. Almost falling off the bathroom counter is the bad idea to end all bad ideas.

Then there was the time I dislocated my knee cap after nearly falling off my bed…

…but I digress.

I decided that risking my life (hyperbole intended) was not worth it, no matter how much relief it would give, so I adapted it.

So, I am going to give a rundown of my bathe-away-the-migraine routine!

❄️Note: During a severe attack, I often find that I will only find relief while in the tub. Even though the pain comes back as intense as before I got in, the break is worth it as far as I am concerned.

After summoning up the energy to make my way to the bathroom, I will gather up my iPad, cold compress, and water bottle and make my way to the bathroom. I will put a towel on the floor so it would be easy to reach when I was done. I will also put my small trash can beside the tub if I was experiencing any nausea (just in case). The water bottle would also remain in reach. The water is important, so please don’t forget it! I would light some small candles, I keep some in the bathroom, to avoid using the vanity lighting (can we say, “OWW“?), activate the drain, and turn on the tap.

Make sure the water is as hot as you can stand it. I usually will add some hot springs powder (a current obsession, thanks to my acupuncturist!), bath salts, or a bath bomb to the water. I won’t use strong fragrances for obvious reasons (all of the above are usually scented). The other day, I picked up some Dr. Teal’s Epsom Salts that have lavender added to it that I will try during my next bath-worthy attack. Lavender is one of those scents commonly used to aide in headaches and migraines. I don’t intend to use as much as the package says to use in a bath, just enough to relax and give the scent. Sometimes, I will light my oil burner with some peppermint oil. Depends on my mood and my migraine. Sometimes, I will add a few drops of Dr. Bronner’s Pure Castile Soap (Peppermint) to the water. I get travel sized bottles at Target!

When I have the tub filled to my liking, I will climb in slowly to allow myself to adjust. I would put my compress on my head or the back of my neck and eventually lie down and just breathe while soft relaxing music plays from Spotify on my iPad. I like either Josh Groban or Celtic Woman the best, but use whatever helps you to relax.

If at any point while adjusting to the heat of the water I feel lightheaded or dizzy, I will drink some of the cool water from my water bottle. This is why the bottle is important. When my acupuncturist recommended the hot springs powders to me, she told me to make sure I had it nearby and sip it when dizzy.

Sometimes I will meditate, but usually I just focus on breathing. When I am ready, I will get out, put on fresh pajamas, and settle back into bed. Sometimes I feel last relief, sometimes I don’t, but either way, I am relaxed enough to doze off into a healing sleep.

💖Hearts and Sparkles!💖
~Bunny~

Chronic Illness and Conventions, Part One: Understanding Your Illness

In my “About Me” post, I briefly mention that I am a cosplayer. I also work at one of my local conventions, Omni Fandom Expo, as their Main Events (or Ballroom) Manager. Basically, I have the job of making sure that anything that happens in Main Events happens when it is supposed to happen as smoothly as possible. I have to think on my feet, and make sure that if it looks like something is going to run late, how can I stop it from starting a chain reaction and delaying the rest of the convention.

It’s a ruddy pain in the fluffy bunny tail, but I love it.

One of the associates at Omni told me that I should write a series of posts directed to people who go to conventions, or want to go to conventions, who struggle with a chronic illness. (❄️Side note: If you are not a convention fan, but you frequent places like Theme Parks, you can definitely apply these posts to that!❄️) So, here is part one!

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Building a Migraine Kit

I’ve seen many Pinterest pins about building a travel migraine kit. (See examples here and here) These are really great examples, and I wanted to share my version that I recently put together, since I am expecting an Amazon order to arrive at some point tomorrow with more gadgets and gizmos to add to it! I have no intention of keeping one in my car, since I live in Florida and the interior temperatures can quickly exceed max temperatures for most medications and such. However, my box is small (about 12x8x2″ or so), so it will travel well!

Here is what I’ve got so far:

I didn’t include a bottled water because the box is too small and I always have a thermos of water at hand. I carry simpler pain medications in my ever-present purse, as well as my sunglasses and migraine glasses, so I have no need to keep them in this kit (Update: I purchased a small pill box and keep ibuprofen, naproxen, and aspirin in my kit, now. My Psi Bands, Aculief, and MigraineX earplugs are in there, too. I also had to get a larger bin as a result, but it is still short and easy to store.). Eventually, I will restock my supply of Be Koool patches, and they will live here, too.

Do any of you have a migraine tool kit? What do you like to keep in it?

💖Hearts and Sparkles!💖
~Bunny~

Migraine Buddy

If you are in need of a way to track your migraines to make it easier to talk to your doctor/specialist about your attacks, a quick google search will turn up many results. It can become overwhelming, but you will see one app show up over and over: Migraine Buddy. This app is available for Android and iOS, and it is amazing. I have been using it since it debuted for iOS (I was on a mailing list to know when it was released to the iTunes Store), and I love it. It is comprehensive, visually simple (and uses a color scheme that isn’t too painful for our photosensitive eyes), and makes it really simple to talk to your doctor.

It even tracks your location for barometric pressure readings, and has a graph to show the pressure forecast for your location! I love this function, since I am sensitive to such pressure changes.

pressure
By looking at this graph, I will have to be careful overnight tonight, as it doesn’t take much of a change (up or down) to trigger someone. It is not a guarantee, but it is nice to not be surprised. Especially in a Florida summer!

You can add or remove triggers, aura, medications, locations, and many more, as well as add any relevant notes you may need down to the minute, like when you took a specific medication.

I highly recommend this one for anyone with Chronic Migraine. I didn’t realize how much I needed a tracker until I started to use it.

Oh, the best part? It’s FREE!!!

Happy tracking!

💖Hearts and Sparkles!💖
~Bunny~

❄️While I am a user of this app and it’s resources, this post is strictly based on my personal opinions, as I am not affiliated with HealInt or Migraine Buddy.

Summer is He…Well, a Very Hot Place…

For migraineurs, that is. Migraines are frequently triggered by environmental stimuli, allergies, weather, whatever. In the summer, we are dealing with so many possible triggers including (but not limited to) heat, extremely humid or dry conditions, elevations of pollen levels, and summer storms that lead to fluctuating barometric pressure levels. It’s awful. I live in Central Florida, and we have notoriously aggressive summer weather. It starts before Memorial Day, and continues to almost Halloween.

It’s rough. This year, I am also traveling to Phoenix, Arizona for the first time just after Labor Day, and I would be lying if I said that I wasn’t worried about how the dry conditions of the Southwest United States (Re: DESERT) will affect me. I grew up in New England, and the winters there can get pretty dry, and I know cold + dry = not necessarily a happy me, so when the variable of “cold” becomes “hot,” well…..

worriedjudy
At any rate, I got to thinking about migraine and summer conditions, and came to the realization that I should probably post something about how to prevent as many summer-related migraines as possible (at least, something more in-depth than my Fourth of July post, and I will be repeating information in this post). I won’t lie to any of you that it is impossible to prevent all of them if you have Chronic Migraine (because if you could, they would not be chronic, now would they?), but you can at least surrender to the dark room knowing that you did not go down without a fight.

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