Summer bring LOTS of fun, but can also be risky living with MyGlitch

Disclosure: As a reminder I don't go back and correct any mental errors while writing because that is true to how my brain works with living with epilepsy. In order to understand this by someone just joining, one example at times I might speak a seteances out ouf order, or repeat them, spelling.

Growing up I always pictured summer full of vacation time with family/friends, sunny beaches, being at the pool, running around just in the yard/throwin the football laround or kickig the soccer ball(of course throwing in some dancing/cheering in thre), bike rides, and relaxing walks in the park. When I became a wife/mom I also dreamed and did those tings with our boys. But when I began living with epilepsy, it changed the way I saw summer. The heat can be a serious challenge. High temperatures are a well-known trigger for seizures, and the risks that come with overheating require careful attention and planning.

I want to share my experience and practical tips to help others stay safe and enjoy the summer as much as possible.

Afterall; I don't know about you but i am not going to let MyGlitch have me miss out on the summer fun with family and friends. Plus that wouldn't be fair to them either.

Why Heat Increases Seizure Risk

Heat affects the body in several ways that can increase potential seizures. The medications itself increases your heat risk, raise or drops your heart rate(which at times causes me to pass out/drop attack seizures) and higher chance of sunburn.(check with your dr/pharmicist your meds for heat caution) When the temp rises, the brain becomes more excitable, which can trigger abnormal electrical activity. Overheating also leads to dehydration and electrolyte imbalances, such as low sodium levels(for me this is also an issue with low BP), this is dangerous for MyGlitches. In extreme cases, heatstroke or fever can develop, both of which significantly raise seizure risk. Just a few reasons of why, body temperature and hydration is critical. It’s not just about being cool, it’s about safety.

Staying Hydrated Is Essential

The most important step is to drink plenty of fluids. Water is the best choice, but electrolyte drinks can also help maintain balance, especially if you sweat a lot. Such as powerade, gatorade, etc. For thise that know me well, always see me with a decorated water bottle. Afterall; if i have to carry one everywhere, might as well have fun with it. Even if at the time I don't feel thirsty, I take it with me to be safe.(My apologies to my husband and boys for the extra bathroom stops:) You also want to try and take small sips vs gulping it down.

I am bad at this one but avoid caffeine, my meds already make me tired, and the added heat, makes me want my caffeine even more. (if you dribk alcohol avoid that too). This becasue it dehyratdes you faster. Maybe choose an afternoon siesta break, this way I can enjoy the evening activities more. You can read about that suggestions, just in my last post on prepping for July 4th.

Avoid the Midday Sun

The sun is usually hottest between 10 a.m. and 4 p.m., making it the riskiest time to be outdoors. My family & I try to plan outdoor activities for early morning or late afternoon when the temperature is cooler. For example if I am gardening or we are going for walks, we try to do it before 9am, or after dinner. But if we are out during the hottest part, like we were for July 4th weekend, you just have to make a few adjustments, and be ready to possibly to change your origial Iplans. Stay in shade if possible, take frequent breaks sitting down in shade & even better air-conditioned spaces.

I do my best to wear light clothing to reduce getiting hotter(now I can't avoid my dreaded menopausal hit flashes LOL).

Regulate Your Body Temperature

Keeping your body cool helps prevent overheating. When I can I place a wet towel around my neck, or have a misting spray bottle to use, there have even been times where I just leave with a wet head of hair, or at least have it pulled up. I also use those to wi[pe down/wet down my face, body. Heck even find a hose like the good old days, if by one and wet down my clothes/hair. Obviously dpending where you are if this is possible.

I have also seen people wear cooling vests, or the fans that go around your neck and sit on your shoulders. This was seen a lot at baseball games and the 4th of Juky events. Even if you don't have epilepsy with these extreme temps, it is needed.

Protect Your Medication from Heat

Many epilepsy meds lose effectiveness or become unsafe if exposed to high temperatures. Believe it or not, some types can even melt in the extreme heat. When traveling I never leave them in the car, as it can get very over heated in the sun. I carry them always on me, at times if we happen to have a cooler with us, I place them in there.

Check the storage instructions on your medication packaging and talk to your pharmacist if you’re unsure.

Never Be Alone During Outdoor Activities

MyGlitch can happen at any time, no matter how much I prepare, I make sure I am never alone when outside, especially in the heat. For example during walks, swimming, or gardening. Having someone nearby means immediate help is available if MyGlitch occurs. Now I can't drive, so pretty much I always have someone with me:)

If you’re planning to swim, make sure whomeber is with you knows how to assist during a seizure and can call for emergency help if needed.

Adjusting Summer Activities

Many of us with epilepsy have to limit our summer activities. At times this also means it limits what our familes Ican do too.

But there are ways to still connect with nature safely:

• Take early morning walks (or evening)when it’s cooler, I also walk on a treadmill inside with fans pointed directly at me, if I can't be outside

• Garden/pull my weeds in shaded areas between 7-9am

• I don't have a pool but if you are at one, make sure you are with someone and it is either in the morning, or cooolerin evening, or even better a covered pool/inddor pool

• I sit under our porch, with a fan blowing on me, out of the sun, just to be outside vs inside all day . Read a book, or do one of my brain games.

• If it's a rough day of MyGlitch, I may just need to enjoy some binge watching of a show. rmember never feel bad if you need that break.

• If you hapen to be on vacation on a beach, make sure to have a cooler with water, and place your pills in there, and sit under something for shade if in the hottest part of day.

  These are small examples that help me feel less isolated and maintain some normalcy during the summer months.

MyGlitch Emotional Impact

I already face many restrictions that others might not understand. Not being able to drive or go out alone already limits independence. Adding the heat factor can make summer feel even more isolating. I find it helpful to stay connected with others through phone calls, video chats, online support groups, yes even SM outlets give a connection(like my blog), and at times a friend is able to pop over during the day if not working. You might just see me wwalking around inside the house to music or chatting to a friend on the phone.

But the thing that makes me feel the best is sharing my personal story To hopefully help others & their families who live with their own Glitch.

I am blessed with a great support system and a family full of love that have adjusted their lives in order for all of us to enjoy the summer.

Believe me when my boys are home, I take full advantage of them:)

I love you all!

***If you feel overwhelmed, consider talking to a counselor or epilepsy specialist who can provide guidance and emotional support.***