Another tip is that a lot of medications can also make you super photosensitive and burn very easily, check not just your current medicines but ones you have taken in the last 6-12 months. I discovered this the hard way when I got really nasty sunburn for the first time ever 6 months after a short course of new medication. I was sensitive to sunlight for nearly a year!
I grew up in Houston, TX - a VERY hot place, and was a mechanic for a while working outside - with my then-undiagnosed EDS. I used to stick small ice cubes into my hair when it was up in a pony tail, also rolling ice cubes in a bandana and then putting that around your neck or head was helpful. You just had to embrace being slightly moist all the time because the humidity meant you never dried off. The same "wing" (upper shoulderblade) area that keeps you warm by being covered in winter will really quickly cool you down when you put a cold pack on that area. Luckily I live in the north now (PHEW!) and still have one of those neck fans for when it's warm :D One last tip for the tropical areas - they make combo sunscreen and bug repellant! One lotion, no spraying poisonous fog. "Incognito, Mineral Suncream Insect Repellent SPF30" is one name, or "Avon Skin So Soft Bug Guard Plus Insect Repellent Gentle Breeze SPF 30 Sunscreen" ♥
I used to take ice cubes and wrap them in a paper towel then get the towel wet with cold water and just have that with me and press it against my head and wherever I needed it until it fully melted. (grew up in Missouri, also have EDS)
I also recommend having a water spray that you put in the fridge (or maybe put ice cubes in it) and then carry around so you can mist yourself with cold water. Or if you want to minimize being wet you can carry those frozen gel bags that people use for cooling injuries
Great video! Lots of fantastic tips. (I’m glad that Claudia’s mistake actually led to you discovering a resource for medications. It’s nice when things work out like that.) ❤️
Some more tips for hot weather fashion! 1. LINEN is your best friend. Seriously, linen dresses, trousers, cardigans...so much cooler than cotton. Palazzo pants are great for air circulation 2. COVER UP: I have a loose semi-sheer linen long sleeve "kimono" style jacket that I always wear when I'm going to be in direct sunlight. It covers my entire arms and keeps you cooler. Also helps prevent mosquito bites to your arms 3. Sometimes sneakers are better: find the kind of sneaker with thin knitted uppers, best if they are the mesh kind, pair with think cotton socks. Sandals often get sweaty and uncomfortable. But if sandals, make sure you're choosing real leather ones, that can absorb some moisture--pleather sandals are the WORST 4. Take a UV-resistant umbrella: I think Jessica mentioned this in the last video but it's definitely legit! Saves you from burning 5. Spaghetti straps may not be your friend: conversely, when you expose more skin it's hotter because the sun is directly heating up your skin. If you're wearing something with more coverage it helps both shield your skin and wick away the sweat
My goodness that lil boy has grown so fast!! So happy to see you guys having a good trip and finding what you need! Thank goodness the pharmacy had it!
It's amazing how much suffering we accept, especially while travelling but also just at home, caused by doctors. There's absolutely no real shortage of triptans, opioids, methylphenidate, etc. They are right there in every pharmacy, but doctors have lobbied to make it impossible to get medication without their constantly repeated permission, even if they admit that you need it for life. I have literally never in my life talked to a doctor because they had some sort of expertise and they were the best person to ask something. Instead it is hundreds of appointments purely to get some sort of letter or permission to do something with my own damn body. Imagine if you had to fear starvation, despite there being no harvest failure, despite having enough money, simply because you don't have a little permission slip to buy food - because the wrong food could be bad for your health, don't cha know - plus a special extra nutritionist's letter if you're abroad. That's life for chronically ill and disabled people.
As a fellow 🦓 who has massive reactions to mosquito bites, I can say the only thing that helped me is taking vitamin B1 complex. I lived abroad for 18 months and only got 3 bites the whole time where I’ve been hospitalised before on holiday as I’ve had so many bites with severe reactions. Would love a video about how you navigate the airport and flight itself 😊
Yep. I don't have EDS, but I have obnoxious reactions to bug bites. They can get huge, turn maroon, or both. It was real fun as a kid because teachers would send me to the nurse to go home thinking I had some contagious disease because "I know what bug bites look like", and camp counselors and coaches would just make me sit on the side and not participate. Unfortunately my parents blamed me "for not just explaining it" and made me pay them back for whatever I missed out on. You'd think they'd have understand it wasn't my inability to explain it after my teacher tried to send me home every single day for three weeks, but no, apparently if I just told the adults they were mosquito bites the problem would be over.
I struggle with this, between my cane, and carry-on, and a drink. I can only travel comfortably if my husband travels with me. We checked a big bag we shared, and each had a "personal item". No carry-on luggage. Me: giant leather satchel that also contains my everyday purse, meds, etc. Foldable metal cane. Husband: backpack. My husband ends up carrying my satchel as well as his backpack because my shoulder gives out. With him with me I can also get a Starbucks Iced tea! Basically, make your more able-bodied partner carry your stuff when you can not, and pay the extra $35 to check a big bag. Lmao!😂 My poor husband. He's amazing.
Medication availability varies so much between countries. I always check rules before booking holidays. Some stuff needs doctors letters to bring into the country.
I take the lmnt electrolyte powder everyday in a protein shake (even when it's not hot) and find it's decreased migraines and helped prevent dehydration I generally drink a lot of water but sometimes if I have a long nap it messes with how much I can manage to drink
I have simple electrolyte powder, it has nothing but the electrolytes (including salt). You can mix it with juice or whatever instead of plain water, if you want. I find it a lot better than just salt, as it has the potassium and magnesium as well.
lovely video!! i just want to say that my chronic pain is actually so much worse in the cold! i feel like that side of the spectrum isn’t as common so i wanted to share my experience
Ooooh this was so cute at the end and so informative for the rest! I struggle with heat intolerance A LOT with my fibromyalgia and POTS, so I’ll definitely be investing in some of this stuff. The neck fan is particularly interesting to me! Not mentioned here but I’m also curious about those towels you can get where you wet them and they stay wet and cold for like twenty minutes, I reckon that could be useful in the heat too! Anyway, thanks so much for this video, Jessica, I always look forward to your uploads so much 🥰
It’s not JUST the glasses for us, lol 😝. I’ve got an entire collection of Stanley containers ALL over the house! I’m slightly addicted to pretty stainless and glass water bottles
I still really appreciate your consistent respect for Rupert's privacy by blurring kiddo's face. I'm in the U.S. and hoping this becomes more commonplace all over and for the U.S. legislation to catch up with the times by giving actual legal protection for children on the internet instead of whackos obsessing over controlling children and parents, but that's a whole other rabbit hole. Your family is just a breath of fresh air for my gay ass who is building an emotional foundation with a partner so we may hopefully expand our family by adding our first child to it. You give me hope in showing so many other ways that normal can look, and it's so validating. Thank you for sharing 💕 it means the world to me to be able to see such a beautiful family that holds so much love, admiration, and mutual respect. I tend to tear up during your videos like this because I live in deep South Texas, surrounded by people with views I'd call backwards, so it's extremely isolating for 2 very visibly queer folx just trying to get by. Again, thank you for just being you and for sharing 💜💕💜💕💜💕💜
This is why I'm so afraid to travel now a days due to my Ulcerative Colitis..the heat just makes it come for an extreme visit..but that neck fan looks like a definite new item in my arsenal. Thank you so much for always sharing your wisdom with us. Have a wonderful time and stay safe.❤
My Mum has Crohn's & she also had Ulcerative Colitis( until they had her colon removed surgically. Can't have inflammation of something of a body you have after all, she still has Crohn's though.) you have my sympathies.
Preparing for my first vacation in years, since I ended up in my chair. It's SO much more complicated! The heat/sun is a REAL problem with said conditions. Glad you had a holiday. You look enchanting in tropical heat, BTW! 👍😍🙏
Urg your first story is so relatable.. I literally just spent an hour on the phone today, waiting for a helpline nurse to help me figure out how to juggle managing my meds this weekend because the government has just changed the regulations on one of my main pain meds and I forgot I now have to get a separate signed script every time from my doctor now, not just a pharmacy repeat with the rest of everything else, so I ran out for the weekend. Can so relate to Claudia's terror, I was in tears knowing how much intense pain I could end up in with horrific withdrawals, if I didn't manage to sort it out, but luckily they had some advice to sort me out for a few days til I can get the script. I'm so relieved, and I'm so relieved for you that you could track something down on your trip! Extras are definitely a good tip. I will always keep back ups now, so I never end up with this again. Travelling with a letter like this is good advice. And yes! 😊 We do need to hear about your shoes, and your fan jessica! 😅 It helps so much! I didnt even realise how many of these things I already do instinctively, its super validating to hear them affirmed and out in a list ❤ Its so beautiful where you are, thank you so much for sharig your travels with us.. it gives me hope for when ive recovered a bit more and can imagine maybe getting organised enough and prepared enough to take a trip and have a dissability friendly adventure again 💖🤞🌈
We have about 25ish glasses in the house and there are only two of us. And that's not counting mugs. And there are only two of us! 6 glasses each is definitely too few.
Oh yeah you can get all sorts of random meds OTC in Malaysia haha - including birth control, which I was very surprised by! Make sure you doible check with the Government of the country you're going to to see if you have to declare your meds or can even bring then in. For instance, Singapore is super strict with drugs and Ritalin is considered enough of a controlled substance that you have to apply for a license at least two weeks before your trip, even if you're just transiting. Otherwise it's jail or worse for you!
I always have to plan any trips I take in the US around the 1st when I get my prescriptions because of one particular controlled medication I'm on. It's always a total bother. The one relief I have is going back to Mexico where it isn't controlled and just an every day over the counter substance. Isn't that WILD? And it's 20x cheaper even, almost the price of a bottle of Aspirin in the states. Glad you ran into the same thing, because I know how absolutely horrifying it is knowing you're going to experience withdrawal in the next 24-36 hours. YAAAY. The water bottle is a MUST, always. I think that's a pain medication thing, as they tend to dry us out more. I'm always thirsty lol
I love neck fans! I discovered them last summer. Edit- Yes they do make child beck fans, but honestly I've got flexible adult ones that can become narrower on the neck than the child model we have for our daughter.
It's worth noting that "stay out of the sun 11-3" is based on the clocks being forward an hour! In most tropical countries they don't have daylight savings time, so you should avoid the sun between 10am and 2pm.
I forgot my own pain meds going to Serbia. Was three days into withdrawal by the time we figure out what to do - that was horrible. Thankfully the thing was pretty easy, bar the waiting - you had to be interviewed by a doctor and I tried to get a printout of my prescription but didn't have phone credit. She was okay with it, so everything was solved. Cost more than 50p, though!
Oh my gosh, I can sympathize!! The waiting during withdrawals is horrid! Every second drags on😵💫😰 I'm happy that you were able to get what you needed & hope you were able to have fun!
Wooooow, I never knew that my constantly blistered feet and extreme sun sensitivity are due to EDS! The things you learn... Thanks Jessica! I only wear slip on shoes with cotton socks, no sandal works for my feet sadly, oh the blisters of the years that I tried to make sandals work....
Important to know: If you travel for a long period that requires bringing a large amount of meds, certain countries require you to apply for an import certificate to be able to bring your medication, and usually it takes a while to review your application and send you the certificate, so it's better to apply several months in advance. In Japan, for example, I couldn't bring my ADHD meds (stimulants) and had to apply for a "yakkan shoumei".
I keep four glasses out on a regular basis. Own more but usually it’s just me home. So two of the glasses I use for my drinks outside of straight water, I use water bottles for that. One of the two is a wine glass. The third glass is the glass my daughter uses on the weekends. The last one is a tumbler style glass that is my rinse cup in the bathroom.
As someone who has a chronic kidney condition that needs Enalapril to keep it under control, I always bring a zip bag of the tablets with me along with 2.5L of water in various bottles. I too wear long- or 3/4-sleeves tops to protect my skin from getting sunburns or bug bites.
I live in Southern California. I usually wear foam flip flops with a fabric piece in between my toes. I find that it better accommodates my changing feet sizes in the heat.
I live in a part of the US that didnt use to get heat waves, and we have the same issues with no AC in places. we get heatwaves that reach 95 (farenheit) in the summer sometimes and its just awful! I actually forget I'm sensitive to heat and dont realize how grumpy and miserable it makes me. I do take meds that make me more sensitive to the heat, so def a great tip to talk to your doctor about stuff like that, cuz I didn't know for the first 6 or 7 years of taking these meds!
100% agree on everything you’ve mentioned and as someone with chronic fatigue I also find I have to be really strict about making myself have a little sit down every so often. I just want to go do/see all the stuff! If I don’t take rests during the day I will be incapable of doing anything the following day and that makes me depressed
I live alone, and I have 16 "everyday" drinking glasses, plus some extras like wine glasses (never even used) and glasses for hot drinks (as well as about 10 cups).
Oh my gosh, this was my fear when I had to go to Mexico for almost a month. I am just lucky that none of my medication on that control that I get advanced, so I had enough for emergencies. But man, that sucks.
In the US we have these spray bottle/fan combos. They usually have a lanyard so you can wear it around your neck (or have your kid strap it around their neck in case they drop it). It's a big spray water bottle with a little fan at the top, that's made of foam so it doesn't hurt your fingers. You can mist yourself and then turn on the fan, so that the cooling is more effective. It's very nice for places like Disney World, even if you don't have any heat issues!
I had something like that [1]back when I used to go to summer camp as a kid. I recently (last year maybe) had suggested that to my parents that look into get a few of those for us( I felt like they gave me this look ' I have no idea what you're talking about.' But thinking back on it pretty sure that was my anxiety talking.) , dad looked into it and said he couldn't find them. Would you mind telling me where you got yours from? [1] minus the spray bottle.
We got ours from a store near Disney that sells souvenirs and random stuff to tourists, but I googled “personal foam fan” and a few of them came up. I’m in the US if that matters.
I’ve got lupus and have experienced the sun completely zapping my energy. I once got sick for 8 days straight (oscillating between high temp and low temp and incredibly nauseous) after spending a few hours of my vacation out in the sun. That neck fan looks like just the thing I need. I also have CIDP and can relate to the demyelination of your nerves causing a weird mixture of numbness and hypersensitivity.
for 5 years (all the teen ones i should have been playing sport and such, oof) i got hives in response to sun and heat and wasn't that fun. all your tips are definitely things i internalised during that time, especially big hat and floaty clothes. it's not enough that the clothes are breathable, if they're on your skin all the time you're going to be very warm anyway.
That's a heart stopping beginning. I have my meds in a my carry-on, with at least 2 days in my pockets and the full bottle of what I know will be hard to get is always in my pants pocket or bea- somewhere I can feel at all times. And that's just domestic travel. As far as air conditioning, there is a line between the north and south united states. The south is warm, and ac is standard. The north is seasonal and most people don't have ac, though increasingly new buildings are being built with it. Climate change has had an impact on construction. Pipes freezing in Texas, roads cracking from heat is Washington, southern California prepped for a hurricane.... The US infrastructure is built very specifically for environment & the environment is changing. Now, developers are trying to be prepared for the future. I'm in Seattle & we wish we had ac every summer, but we only need it a few weeks a year. I think a lot of people are weighing the expenses but if you can afford it, it's definitely worth doing.
I don’t think it is as simple as people in the Northern U.S. don’t have air. We are in Chicago and the summers are HOT. Most houses, stores and restaurants have air conditioning . Even people in apartments and older houses put in window units for the summer.
I was raised in Florida, lived for nearly 7 years in Chicago (without AC in my apartment), and now live in England (without aircon in my home). Big differences between English heatwaves and Chicago heatwaves are 1. English heatwaves are more humid 2. It isn't just your home that doesn't have aircon in England; it is nearly everywhere. In Chicago, I could go to shops, restaurants, my workplace, a library, etc to escape being in the heat. Although I can think of a few places with some aircon here in England (Costco, some supermarkets, etc), they are much fewer and further between making it feel as though the heat is inescapable.
@jennifers5560 When I've asked people, most have said something along the lines of, "Why would we? We only get two weeks of hot weather." Then we get well over a month of uncomfortably hot weather, spread out over the summer months, at least in the south of England. I think the weather patterns have changed dramatically enough in people's lifetimes that they have weather expectations that don't align with current reality. I do occasionally hear people say, "This is our new reality, so we need to adapt." Perhaps change is coming. Other factors include lots of older buildings that would need to be changed to accommodate central air, higher cost of energy, and a greater general belief in making small changes in your own life to lessen your impact on the climate (as compared to most of my American friends/family)
Heat pumps are amazing and should be a default moving forward until another technology emerges. Its hard to beat the thermal conductivity of fluids when used in the best way possible. Hopefully the UK starts to realise this and upgrade infrastructure accordingly.
I don’t know if it would be useful for you, but I kinda like these mosquitoe heat sticks. The proteins that cause the itching are heat sensitive, so the stick heats up to a certain temperature (I don’t exactly know how hot, but it’s definitely not enough to get burned) and you put it on the mosquito bite for a few seconds and then voila, no more itching!
I have a cup in every room of my flat so I only have to think of the teapot 😂 so I can relate to the glass situation… and thank you for all the great tips. I’m more hopeful now that maybe I’ll be able to travel one day despite my chronic illness. Thank you for that ❤
Thank you for all the advice! I might have to get the neck fan for myself even though I dont live/travel to tropics, our summers tend to get very hot and who knows maybe a neck fan is what will help me get throught them
I shall be traveling shortly with an arms length of chronic illnesses to the island of ice. I am from a hot humid climate where if it gets to 30f /-1c we are all going to freeze. Send me good wishes thar I survive and don't get arrested with my prescriptions.
Yup as an American who lives in New Mexico which is southern US. We get 100+degree f heat days every summer for about 2 weeks and it’s brutal. My air con gets a lot of use. If someone’s goes out it is an actual crisis.
I used spray bottles of peppermint or lavender water to water down in the summer. I’ve also used wet cloths in a Tupperware of lavender or peppermint water. You can then put them around the neck or under a hat.
As someone who has eye drops, tablets and an injection every 12 weeks (T) i know the struggle. I also take painkillers and anti D tablets. Many of my meds i can take but if i run out : i can't get it in the places i go on holiday: specifically, my liquid eye drops and eye ointments that i've been having to use since birth. I'm 26 now lol. I have dark sunglasses as my eyes are sensitive to light but often times even those aren't protective enough from the rays. Additionally , i suffer from migraines. Some conditions i have had since i was born and some are still being investigated. Hugs. I carry mine in my hand luggage. Oh and i am a magnet to bug bites. I used to be bad with them more so the fleas . Allergic to fleas but not had a bad episode since i was younger, main symptoms are same as other people extreme itching, swelling, redness etc. Now allergic to latex , yay!. Lol. I always bring squash (dilute fruit centrated juice) and by bottles with a sucky top (i can't drink from flaptops well due to the shape of my mouth and tongue position). I always pack more clothes than needed incase of accidents, getting wet etc. My body hates the heat but i love it. We always go turkey but would love to travel. Xx
I have hEDS and I went to the Philippines with my partner to see his family last year, so I have had a really similar experience. I made sure to keep braces and orthotics and painkillers near me at all times, though we honestly spent most of our time indoors anyway so I didn’t end up needing to pay that much extra attention to my health till I suddenly got pleurisy on like day 7 or 8.
I’ve never heard that about EDS making you more sensitive to the sun. I’ve always felt like my skin is just sizzling in the sun but everyone just said it’s because I’m a redhead but I don’t think my mom is like that (also a redhead) or some others I’ve known.
Thank you so much for this video. I have EDS as well and I do a lot of these things just in general. I don’t travel much even though I wish I did. Thank you for always putting out the best videos on the Internet.
Mosquitos tend to like to bite tender areas of skin, like ankles, wrists, inside the elbow, etc. Anywhere that the skin is a little thinner. Maybe your nerves are more likely to be hyper-sensitive in those thinner areas?
low fat salty potatoe crisps and coke or strong black twa with lemon are also my go-to headache releave! crisps also have the highest potassium conted, which is good in those moments. (low fat bcs i have a sensitiv stomach)
I always take more meds with me than needed, things can happen and me and missing even one night of meds means atleast a week of suffering for everyone around me! Mostly me, but I do not keep quiet about it. So you will see me bring weeks forth of meds for a weekend, I just like to be ready for every situation. My meds are common, so it would not be a problem to get more of them when traveling out of country, but I would rather not deal with that.
I (Australian) have this argument with my English cousins and my cousin who lives in Ireland when I say it’s cold and they scoff at me. Like I explain to them, we get days up to and over 40 degrees Celsius where I am in QLD, so of course under 10 degrees is cold for me Plus QLD is more built for the heat
(/genuine) I’m glad you’re working to protect your child’s privacy by not showing his face. You may want to consider also not posting any footage of him without a shirt on… or, honestly, perhaps don’t show him at all
I'm fairly certain you're home now but, since you can buy that med over the counter in Malaysia, did you stock up? Or did you just get what you needed to get through the few days you were there?
Thank you for your video! I have a follow up question: How important is it that the medication is in the original packaging during travelling? I have chronic kidney disease and I'm currently on 8 meds, and I found on the internet that I should always keep them in the original packaging for travelling, on one page followed by "get a medication organizer" (which I use anyways). One of the reasonings I found was that it helps to replace any lost medication, but I'll bring my medication plan with me anyways, so I could get the info from there. I'm also not talking about medication that is fun to abuse, so it's unlikely to be a controlled substance in other countries. I was diagnosed with CKD last Spring / Summer, so some stuff is still new to me. Thank you!
Heh my carer is always saying there are too many mugs. (Easier to pick up than glasses for me). But they're days where the washing up doesn't get done, so they do all get used lol. Have said he can get rid of some, when that stops happening. Definitely will you on the salt I get really bad leg cramps without it.
Crisps and diet Coke. Too bad I can't drink colas... Living as I do in Texas, neither on the coast or in the westestern parts or Panhandle I have the joy of all the heat and most of the humidity! And I'm allergic to bugs as well, especially ants! especially fire ants! Fire ants, an Amazonian unintended import sting is a related sting to scorpions... fun.
As a fellow adhder I've given up and just started using disposable cups most of the time. I know it's bad for the environment but it's an accommodation that allows me to not live in filth.
do compression socks help with your feet? I had foot surgery this last year and with compression socks my feet swell a little, but without them from the morning until bedtime my foot can increase anywhere from 2 to 4 sizes. so if I"m going to leave the house and need to be on my feet for more than an hour, I put compression socks on first thing in the morning. If I'm going to be home it depends on my mood whether I want to deal with the swelling or the compression socks.
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You're doing great!
Thank you 🙏😊
Thank you!
THANK YOU!!!! ❤
Another tip is that a lot of medications can also make you super photosensitive and burn very easily, check not just your current medicines but ones you have taken in the last 6-12 months. I discovered this the hard way when I got really nasty sunburn for the first time ever 6 months after a short course of new medication. I was sensitive to sunlight for nearly a year!
I grew up in Houston, TX - a VERY hot place, and was a mechanic for a while working outside - with my then-undiagnosed EDS. I used to stick small ice cubes into my hair when it was up in a pony tail, also rolling ice cubes in a bandana and then putting that around your neck or head was helpful. You just had to embrace being slightly moist all the time because the humidity meant you never dried off. The same "wing" (upper shoulderblade) area that keeps you warm by being covered in winter will really quickly cool you down when you put a cold pack on that area.
Luckily I live in the north now (PHEW!) and still have one of those neck fans for when it's warm :D
One last tip for the tropical areas - they make combo sunscreen and bug repellant! One lotion, no spraying poisonous fog. "Incognito, Mineral Suncream Insect Repellent SPF30" is one name, or "Avon Skin So Soft Bug Guard Plus Insect Repellent Gentle Breeze SPF 30 Sunscreen" ♥
I used to take ice cubes and wrap them in a paper towel then get the towel wet with cold water and just have that with me and press it against my head and wherever I needed it until it fully melted. (grew up in Missouri, also have EDS)
I do ice cubes in the hair too. I find a braid holds them in there best.
I also recommend having a water spray that you put in the fridge (or maybe put ice cubes in it) and then carry around so you can mist yourself with cold water. Or if you want to minimize being wet you can carry those frozen gel bags that people use for cooling injuries
I went to Houston on vacation during the summer ONCE. Never again 🫠
Great video! Lots of fantastic tips. (I’m glad that Claudia’s mistake actually led to you discovering a resource for medications. It’s nice when things work out like that.) ❤️
The "yes, having the toddler nap now may cost us later. BUT ALSO DATE WITH THE WOMAN I LOVE" is so relatable.
Some more tips for hot weather fashion!
1. LINEN is your best friend. Seriously, linen dresses, trousers, cardigans...so much cooler than cotton. Palazzo pants are great for air circulation
2. COVER UP: I have a loose semi-sheer linen long sleeve "kimono" style jacket that I always wear when I'm going to be in direct sunlight. It covers my entire arms and keeps you cooler. Also helps prevent mosquito bites to your arms
3. Sometimes sneakers are better: find the kind of sneaker with thin knitted uppers, best if they are the mesh kind, pair with think cotton socks. Sandals often get sweaty and uncomfortable. But if sandals, make sure you're choosing real leather ones, that can absorb some moisture--pleather sandals are the WORST
4. Take a UV-resistant umbrella: I think Jessica mentioned this in the last video but it's definitely legit! Saves you from burning
5. Spaghetti straps may not be your friend: conversely, when you expose more skin it's hotter because the sun is directly heating up your skin. If you're wearing something with more coverage it helps both shield your skin and wick away the sweat
My goodness that lil boy has grown so fast!! So happy to see you guys having a good trip and finding what you need! Thank goodness the pharmacy had it!
Thank you. Even an hour in the car can be difficult for me, so all hints about traveling with chronic illness is welcome.
It's amazing how much suffering we accept, especially while travelling but also just at home, caused by doctors. There's absolutely no real shortage of triptans, opioids, methylphenidate, etc. They are right there in every pharmacy, but doctors have lobbied to make it impossible to get medication without their constantly repeated permission, even if they admit that you need it for life.
I have literally never in my life talked to a doctor because they had some sort of expertise and they were the best person to ask something. Instead it is hundreds of appointments purely to get some sort of letter or permission to do something with my own damn body.
Imagine if you had to fear starvation, despite there being no harvest failure, despite having enough money, simply because you don't have a little permission slip to buy food - because the wrong food could be bad for your health, don't cha know - plus a special extra nutritionist's letter if you're abroad. That's life for chronically ill and disabled people.
As a fellow 🦓 who has massive reactions to mosquito bites, I can say the only thing that helped me is taking vitamin B1 complex. I lived abroad for 18 months and only got 3 bites the whole time where I’ve been hospitalised before on holiday as I’ve had so many bites with severe reactions.
Would love a video about how you navigate the airport and flight itself 😊
Yep. I don't have EDS, but I have obnoxious reactions to bug bites. They can get huge, turn maroon, or both. It was real fun as a kid because teachers would send me to the nurse to go home thinking I had some contagious disease because "I know what bug bites look like", and camp counselors and coaches would just make me sit on the side and not participate. Unfortunately my parents blamed me "for not just explaining it" and made me pay them back for whatever I missed out on. You'd think they'd have understand it wasn't my inability to explain it after my teacher tried to send me home every single day for three weeks, but no, apparently if I just told the adults they were mosquito bites the problem would be over.
I struggle with this, between my cane, and carry-on, and a drink. I can only travel comfortably if my husband travels with me. We checked a big bag we shared, and each had a "personal item". No carry-on luggage.
Me: giant leather satchel that also contains my everyday purse, meds, etc. Foldable metal cane. Husband: backpack.
My husband ends up carrying my satchel as well as his backpack because my shoulder gives out. With him with me I can also get a Starbucks Iced tea!
Basically, make your more able-bodied partner carry your stuff when you can not, and pay the extra $35 to check a big bag. Lmao!😂
My poor husband. He's amazing.
Partially full glasses all around the house is actually a great defense strategy for when those aliens from Signs show up 👽 😂
i was always leaving half full or 1/3rd full water around & when that movie came out my best friend said to me “it makes sense now” lol
I feel so called out.
Medication availability varies so much between countries. I always check rules before booking holidays. Some stuff needs doctors letters to bring into the country.
There are also powder and tablets you can carry with you to increase salt and other electrolytes. My favorite is Liquid IV. Tastes like Kool aid! ❤
I take the lmnt electrolyte powder everyday in a protein shake (even when it's not hot) and find it's decreased migraines and helped prevent dehydration I generally drink a lot of water but sometimes if I have a long nap it messes with how much I can manage to drink
I don't think Jessica could have Liquid IV because it has sugar in it. It does taste really good though.
I have simple electrolyte powder, it has nothing but the electrolytes (including salt). You can mix it with juice or whatever instead of plain water, if you want.
I find it a lot better than just salt, as it has the potassium and magnesium as well.
@@waffles3629they have a few sugar free flavors.
lovely video!! i just want to say that my chronic pain is actually so much worse in the cold! i feel like that side of the spectrum isn’t as common so i wanted to share my experience
I’m exactly the same way. Thrive in heat, turn into an absolute mess once it gets cold.
Ooooh this was so cute at the end and so informative for the rest! I struggle with heat intolerance A LOT with my fibromyalgia and POTS, so I’ll definitely be investing in some of this stuff. The neck fan is particularly interesting to me! Not mentioned here but I’m also curious about those towels you can get where you wet them and they stay wet and cold for like twenty minutes, I reckon that could be useful in the heat too!
Anyway, thanks so much for this video, Jessica, I always look forward to your uploads so much 🥰
Those are great tips! 🙂 I laughed when the closed captioning says “Danny” near the beginning. 🤣 Thank you for this enjoyable video. ❤️
It’s not JUST the glasses for us, lol 😝. I’ve got an entire collection of Stanley containers ALL over the house! I’m slightly addicted to pretty stainless and glass water bottles
I still really appreciate your consistent respect for Rupert's privacy by blurring kiddo's face.
I'm in the U.S. and hoping this becomes more commonplace all over and for the U.S. legislation to catch up with the times by giving actual legal protection for children on the internet instead of whackos obsessing over controlling children and parents, but that's a whole other rabbit hole.
Your family is just a breath of fresh air for my gay ass who is building an emotional foundation with a partner so we may hopefully expand our family by adding our first child to it. You give me hope in showing so many other ways that normal can look, and it's so validating.
Thank you for sharing 💕 it means the world to me to be able to see such a beautiful family that holds so much love, admiration, and mutual respect.
I tend to tear up during your videos like this because I live in deep South Texas, surrounded by people with views I'd call backwards, so it's extremely isolating for 2 very visibly queer folx just trying to get by.
Again, thank you for just being you and for sharing 💜💕💜💕💜💕💜
This is why I'm so afraid to travel now a days due to my Ulcerative Colitis..the heat just makes it come for an extreme visit..but that neck fan looks like a definite new item in my arsenal. Thank you so much for always sharing your wisdom with us. Have a wonderful time and stay safe.❤
My Mum has Crohn's & she also had Ulcerative Colitis( until they had her colon removed surgically. Can't have inflammation of something of a body you have after all, she still has Crohn's though.) you have my sympathies.
OML, that neck fan is awesome and I want one now. I didn't know those even existed. 🤯
Preparing for my first vacation in years, since I ended up in my chair. It's SO much more complicated! The heat/sun is a REAL problem with said conditions. Glad you had a holiday. You look enchanting in tropical heat, BTW! 👍😍🙏
Urg your first story is so relatable.. I literally just spent an hour on the phone today, waiting for a helpline nurse to help me figure out how to juggle managing my meds this weekend because the government has just changed the regulations on one of my main pain meds and I forgot I now have to get a separate signed script every time from my doctor now, not just a pharmacy repeat with the rest of everything else, so I ran out for the weekend.
Can so relate to Claudia's terror, I was in tears knowing how much intense pain I could end up in with horrific withdrawals, if I didn't manage to sort it out, but luckily they had some advice to sort me out for a few days til I can get the script.
I'm so relieved, and I'm so relieved for you that you could track something down on your trip!
Extras are definitely a good tip.
I will always keep back ups now, so I never end up with this again.
Travelling with a letter like this is good advice.
And yes! 😊 We do need to hear about your shoes, and your fan jessica! 😅 It helps so much! I didnt even realise how many of these things I already do instinctively, its super validating to hear them affirmed and out in a list ❤
Its so beautiful where you are, thank you so much for sharig your travels with us.. it gives me hope for when ive recovered a bit more and can imagine maybe getting organised enough and prepared enough to take a trip and have a dissability friendly adventure again 💖🤞🌈
I'm very glad you were able to get the medication! it is so wonderful that you have several doctors in your family
I am so sorry for you both...I completely understand your fear...I have 2 I will die without...you're the best!❤
Not so much glasses, but I probably have 20 mugs (I live alone). And the cupboard can often be down to the last half dozen.
We have about 25ish glasses in the house and there are only two of us. And that's not counting mugs. And there are only two of us! 6 glasses each is definitely too few.
I agree, we probably have 50 glasses plus who knows how many mugs. 6 wouldn’t last us one day.
Oh yeah you can get all sorts of random meds OTC in Malaysia haha - including birth control, which I was very surprised by!
Make sure you doible check with the Government of the country you're going to to see if you have to declare your meds or can even bring then in. For instance, Singapore is super strict with drugs and Ritalin is considered enough of a controlled substance that you have to apply for a license at least two weeks before your trip, even if you're just transiting. Otherwise it's jail or worse for you!
I always have to plan any trips I take in the US around the 1st when I get my prescriptions because of one particular controlled medication I'm on. It's always a total bother. The one relief I have is going back to Mexico where it isn't controlled and just an every day over the counter substance. Isn't that WILD? And it's 20x cheaper even, almost the price of a bottle of Aspirin in the states. Glad you ran into the same thing, because I know how absolutely horrifying it is knowing you're going to experience withdrawal in the next 24-36 hours. YAAAY.
The water bottle is a MUST, always. I think that's a pain medication thing, as they tend to dry us out more. I'm always thirsty lol
I love neck fans! I discovered them last summer.
Edit- Yes they do make child beck fans, but honestly I've got flexible adult ones that can become narrower on the neck than the child model we have for our daughter.
It's worth noting that "stay out of the sun 11-3" is based on the clocks being forward an hour! In most tropical countries they don't have daylight savings time, so you should avoid the sun between 10am and 2pm.
I forgot my own pain meds going to Serbia. Was three days into withdrawal by the time we figure out what to do - that was horrible. Thankfully the thing was pretty easy, bar the waiting - you had to be interviewed by a doctor and I tried to get a printout of my prescription but didn't have phone credit. She was okay with it, so everything was solved. Cost more than 50p, though!
Oh my gosh, I can sympathize!! The waiting during withdrawals is horrid! Every second drags on😵💫😰 I'm happy that you were able to get what you needed & hope you were able to have fun!
❤
It's so nice to see you walk and move and go out
Wooooow, I never knew that my constantly blistered feet and extreme sun sensitivity are due to EDS! The things you learn... Thanks Jessica! I only wear slip on shoes with cotton socks, no sandal works for my feet sadly, oh the blisters of the years that I tried to make sandals work....
Important to know: If you travel for a long period that requires bringing a large amount of meds, certain countries require you to apply for an import certificate to be able to bring your medication, and usually it takes a while to review your application and send you the certificate, so it's better to apply several months in advance. In Japan, for example, I couldn't bring my ADHD meds (stimulants) and had to apply for a "yakkan shoumei".
I keep four glasses out on a regular basis. Own more but usually it’s just me home. So two of the glasses I use for my drinks outside of straight water, I use water bottles for that. One of the two is a wine glass. The third glass is the glass my daughter uses on the weekends. The last one is a tumbler style glass that is my rinse cup in the bathroom.
As someone who has a chronic kidney condition that needs Enalapril to keep it under control, I always bring a zip bag of the tablets with me along with 2.5L of water in various bottles. I too wear long- or 3/4-sleeves tops to protect my skin from getting sunburns or bug bites.
I live in Southern California. I usually wear foam flip flops with a fabric piece in between my toes. I find that it better accommodates my changing feet sizes in the heat.
I live in a part of the US that didnt use to get heat waves, and we have the same issues with no AC in places. we get heatwaves that reach 95 (farenheit) in the summer sometimes and its just awful! I actually forget I'm sensitive to heat and dont realize how grumpy and miserable it makes me. I do take meds that make me more sensitive to the heat, so def a great tip to talk to your doctor about stuff like that, cuz I didn't know for the first 6 or 7 years of taking these meds!
100% agree on everything you’ve mentioned and as someone with chronic fatigue I also find I have to be really strict about making myself have a little sit down every so often. I just want to go do/see all the stuff!
If I don’t take rests during the day I will be incapable of doing anything the following day and that makes me depressed
I live alone, and I have 16 "everyday" drinking glasses, plus some extras like wine glasses (never even used) and glasses for hot drinks (as well as about 10 cups).
Oh my gosh, this was my fear when I had to go to Mexico for almost a month. I am just lucky that none of my medication on that control that I get advanced, so I had enough for emergencies. But man, that sucks.
In the US we have these spray bottle/fan combos. They usually have a lanyard so you can wear it around your neck (or have your kid strap it around their neck in case they drop it). It's a big spray water bottle with a little fan at the top, that's made of foam so it doesn't hurt your fingers. You can mist yourself and then turn on the fan, so that the cooling is more effective. It's very nice for places like Disney World, even if you don't have any heat issues!
I had something like that [1]back when I used to go to summer camp as a kid.
I recently (last year maybe) had suggested that to my parents that look into get a few of those for us( I felt like they gave me this look ' I have no idea what you're talking about.' But thinking back on it pretty sure that was my anxiety talking.) , dad looked into it and said he couldn't find them.
Would you mind telling me where you got yours from?
[1] minus the spray bottle.
We got ours from a store near Disney that sells souvenirs and random stuff to tourists, but I googled “personal foam fan” and a few of them came up. I’m in the US if that matters.
@@eliontheinternet3298 Okay thanks I'll try looking up personal foam fans.
I’ve got lupus and have experienced the sun completely zapping my energy. I once got sick for 8 days straight (oscillating between high temp and low temp and incredibly nauseous) after spending a few hours of my vacation out in the sun. That neck fan looks like just the thing I need.
I also have CIDP and can relate to the demyelination of your nerves causing a weird mixture of numbness and hypersensitivity.
for 5 years (all the teen ones i should have been playing sport and such, oof) i got hives in response to sun and heat and wasn't that fun. all your tips are definitely things i internalised during that time, especially big hat and floaty clothes. it's not enough that the clothes are breathable, if they're on your skin all the time you're going to be very warm anyway.
That's a heart stopping beginning. I have my meds in a my carry-on, with at least 2 days in my pockets and the full bottle of what I know will be hard to get is always in my pants pocket or bea- somewhere I can feel at all times. And that's just domestic travel.
As far as air conditioning, there is a line between the north and south united states. The south is warm, and ac is standard. The north is seasonal and most people don't have ac, though increasingly new buildings are being built with it.
Climate change has had an impact on construction. Pipes freezing in Texas, roads cracking from heat is Washington, southern California prepped for a hurricane.... The US infrastructure is built very specifically for environment & the environment is changing. Now, developers are trying to be prepared for the future.
I'm in Seattle & we wish we had ac every summer, but we only need it a few weeks a year. I think a lot of people are weighing the expenses but if you can afford it, it's definitely worth doing.
I don’t think it is as simple as people in the Northern U.S. don’t have air. We are in Chicago and the summers are HOT. Most houses, stores and restaurants have air conditioning . Even people in apartments and older houses put in window units for the summer.
I was raised in Florida, lived for nearly 7 years in Chicago (without AC in my apartment), and now live in England (without aircon in my home). Big differences between English heatwaves and Chicago heatwaves are
1. English heatwaves are more humid
2. It isn't just your home that doesn't have aircon in England; it is nearly everywhere. In Chicago, I could go to shops, restaurants, my workplace, a library, etc to escape being in the heat. Although I can think of a few places with some aircon here in England (Costco, some supermarkets, etc), they are much fewer and further between making it feel as though the heat is inescapable.
@@kate4781 ok, so now I have to ask. Why aren’t there more air conditioned places in England? Is it a cost of energy thing?
@jennifers5560 When I've asked people, most have said something along the lines of, "Why would we? We only get two weeks of hot weather." Then we get well over a month of uncomfortably hot weather, spread out over the summer months, at least in the south of England. I think the weather patterns have changed dramatically enough in people's lifetimes that they have weather expectations that don't align with current reality. I do occasionally hear people say, "This is our new reality, so we need to adapt." Perhaps change is coming.
Other factors include lots of older buildings that would need to be changed to accommodate central air, higher cost of energy, and a greater general belief in making small changes in your own life to lessen your impact on the climate (as compared to most of my American friends/family)
@@kate4781 interesting!
These are good tips! Thanks for sharing 😊
I stayed an a hotel in London. It was hot and the hotel only had a fan. I live in the States and it was HOT. #noaircon
Heat pumps are amazing and should be a default moving forward until another technology emerges. Its hard to beat the thermal conductivity of fluids when used in the best way possible. Hopefully the UK starts to realise this and upgrade infrastructure accordingly.
I don’t know if it would be useful for you, but I kinda like these mosquitoe heat sticks. The proteins that cause the itching are heat sensitive, so the stick heats up to a certain temperature (I don’t exactly know how hot, but it’s definitely not enough to get burned) and you put it on the mosquito bite for a few seconds and then voila, no more itching!
I have a cup in every room of my flat so I only have to think of the teapot 😂 so I can relate to the glass situation… and thank you for all the great tips. I’m more hopeful now that maybe I’ll be able to travel one day despite my chronic illness. Thank you for that ❤
One thing I deal with is one of my meds is illegal in the country I am wanting to visit... :(
Yep. I can't even take my meds out of the state because not even medical cannabis has been federally legalized.
What were people wearing in Malaysia in the 1950s? Do you search out local retro when you are there? Please show us!
I just bought one of those neck fans last year and it was so helpful
Welcome to Malaysia ❤
Thank you for all the advice! I might have to get the neck fan for myself even though I dont live/travel to tropics, our summers tend to get very hot and who knows maybe a neck fan is what will help me get throught them
I shall be traveling shortly with an arms length of chronic illnesses to the island of ice. I am from a hot humid climate where if it gets to 30f /-1c we are all going to freeze. Send me good wishes thar I survive and don't get arrested with my prescriptions.
As someone who doesn't take the heat well at ALL, stage 4 endo bs... I just bought a neck fan. lol Thanks
Yup as an American who lives in New Mexico which is southern US. We get 100+degree f heat days every summer for about 2 weeks and it’s brutal. My air con gets a lot of use. If someone’s goes out it is an actual crisis.
I call shenanigans! No American would say ‘Why do you not have air con?’. We'd say ‘Why don't you have AC?’.
I have 6 glasses for two adults at home. We always use the same two glasses. 😂
I used spray bottles of peppermint or lavender water to water down in the summer. I’ve also used wet cloths in a Tupperware of lavender or peppermint water. You can then put them around the neck or under a hat.
As someone who has eye drops, tablets and an injection every 12 weeks (T) i know the struggle. I also take painkillers and anti D tablets. Many of my meds i can take but if i run out : i can't get it in the places i go on holiday: specifically, my liquid eye drops and eye ointments that i've been having to use since birth. I'm 26 now lol. I have dark sunglasses as my eyes are sensitive to light but often times even those aren't protective enough from the rays. Additionally , i suffer from migraines. Some conditions i have had since i was born and some are still being investigated. Hugs. I carry mine in my hand luggage. Oh and i am a magnet to bug bites. I used to be bad with them more so the fleas . Allergic to fleas but not had a bad episode since i was younger, main symptoms are same as other people extreme itching, swelling, redness etc. Now allergic to latex , yay!. Lol.
I always bring squash (dilute fruit centrated juice) and by bottles with a sucky top (i can't drink from flaptops well due to the shape of my mouth and tongue position).
I always pack more clothes than needed incase of accidents, getting wet etc.
My body hates the heat but i love it. We always go turkey but would love to travel. Xx
I can ralate to leaving glasses around the house as well🙋♀️
I have hEDS and I went to the Philippines with my partner to see his family last year, so I have had a really similar experience. I made sure to keep braces and orthotics and painkillers near me at all times, though we honestly spent most of our time indoors anyway so I didn’t end up needing to pay that much extra attention to my health till I suddenly got pleurisy on like day 7 or 8.
I use one glass for coffee and one for water each day.
I’ve never heard that about EDS making you more sensitive to the sun. I’ve always felt like my skin is just sizzling in the sun but everyone just said it’s because I’m a redhead but I don’t think my mom is like that (also a redhead) or some others I’ve known.
Thank you so much for this video. I have EDS as well and I do a lot of these things just in general. I don’t travel much even though I wish I did. Thank you for always putting out the best videos on the Internet.
Mosquitos tend to like to bite tender areas of skin, like ankles, wrists, inside the elbow, etc. Anywhere that the skin is a little thinner. Maybe your nerves are more likely to be hyper-sensitive in those thinner areas?
low fat salty potatoe crisps and coke or strong black twa with lemon are also my go-to headache releave! crisps also have the highest potassium conted, which is good in those moments. (low fat bcs i have a sensitiv stomach)
I have been on mmf for 4 years only last summer did I realize there's a risk for me in uv light,, thanks fellow transplant patent who told me that !
It's nice to look at you.
I always take more meds with me than needed, things can happen and me and missing even one night of meds means atleast a week of suffering for everyone around me! Mostly me, but I do not keep quiet about it. So you will see me bring weeks forth of meds for a weekend, I just like to be ready for every situation. My meds are common, so it would not be a problem to get more of them when traveling out of country, but I would rather not deal with that.
I (Australian) have this argument with my English cousins and my cousin who lives in Ireland when I say it’s cold and they scoff at me. Like I explain to them, we get days up to and over 40 degrees Celsius where I am in QLD, so of course under 10 degrees is cold for me
Plus QLD is more built for the heat
Oh god, that sinking feeling when your toddler falls asleep in the evening.
(/genuine) I’m glad you’re working to protect your child’s privacy by not showing his face. You may want to consider also not posting any footage of him without a shirt on… or, honestly, perhaps don’t show him at all
If you encounter gnats in bunches. Absorbine Junior works for folks in Iowa.
we're 2 adults in my household and we have 8 in total ^^
Now I'm interested what the medication is, that it's OTC in Malaysia :D
Jessica: Eat salt when your out in the sun.
Me: having high blood pressure 😅
I'm fairly certain you're home now but, since you can buy that med over the counter in Malaysia, did you stock up? Or did you just get what you needed to get through the few days you were there?
I would have bought some extras to bring back. Nothing wrong with having a few days supply in case something happens.
Thank you for your video! I have a follow up question: How important is it that the medication is in the original packaging during travelling? I have chronic kidney disease and I'm currently on 8 meds, and I found on the internet that I should always keep them in the original packaging for travelling, on one page followed by "get a medication organizer" (which I use anyways). One of the reasonings I found was that it helps to replace any lost medication, but I'll bring my medication plan with me anyways, so I could get the info from there. I'm also not talking about medication that is fun to abuse, so it's unlikely to be a controlled substance in other countries.
I was diagnosed with CKD last Spring / Summer, so some stuff is still new to me. Thank you!
Heh my carer is always saying there are too many mugs. (Easier to pick up than glasses for me). But they're days where the washing up doesn't get done, so they do all get used lol. Have said he can get rid of some, when that stops happening.
Definitely will you on the salt I get really bad leg cramps without it.
You are a lovely couple
I am always drinking electrolytes.
Crisps and diet Coke. Too bad I can't drink colas... Living as I do in Texas, neither on the coast or in the westestern parts or Panhandle I have the joy of all the heat and most of the humidity! And I'm allergic to bugs as well, especially ants! especially fire ants! Fire ants, an Amazonian unintended import sting is a related sting to scorpions... fun.
The sun doesn’t exactly hurt my skin, but it makes me really sick. It’s.
There's some audio issues in this video huh? Some noise and buzzing, and sort of muffled.
Can you recommend any places to buy lovely floaty summer dresses?
20 glasses, 6 water bottles for two adults and two teenagers, at least two of us have ADHD (and at least two of us are autistic lol)
💖
I have the same water bottle as you except in blue/blue!!!
Also also, I'd look into botox treatments in Malaysia if I were you
random thought: what if you could do TMJ in Malaysia?))
18:23 .... are mugs/cups included in our glasses count, cause if so Im way over 12 just for me and the occasional guest.
As a fellow adhder I've given up and just started using disposable cups most of the time. I know it's bad for the environment but it's an accommodation that allows me to not live in filth.
With a lot of planning
do compression socks help with your feet? I had foot surgery this last year and with compression socks my feet swell a little, but without them from the morning until bedtime my foot can increase anywhere from 2 to 4 sizes. so if I"m going to leave the house and need to be on my feet for more than an hour, I put compression socks on first thing in the morning. If I'm going to be home it depends on my mood whether I want to deal with the swelling or the compression socks.
Wait sun hurting your skin's not normal....
can you not get the Botox privately? or have they nixed it entirely ?
"Cool people who wear headphones" lol Im not cool just autistic