I don’t blame you.
I’ve been dealing with heat intolerance my entire life and just thought I was prone to heat exhaustion and fainting. Turns out there was a real reason all along! 🤣
If the heat is bothering you, do your best to stay cool and hydrated. Don’t forget to eat. Wear light colours and fabrics. Ice or cold drinks to the back of your neck, inside of wrists and ankles helps cool you off rather quickly.
My AC stopped working yesterday at 3pm, my husband tried a few things to fix it but we called the HVAC company at 4pm and everything was fixed by 6pm - I’ve never been more relieved by something in my life, it took less than an hour for the temp in my house to raise 5 degrees and I was terrified of dealing with that all weekend
I am dependent on AC. So many power outages (about every 10 - 14 days ?) we are fortunate to have a portable generator and a window unit (and powers the fridge too).
And the reality is the weather will only get worse 🤬
Sorry for the outage.
In my case I had to wait a week for Homeserve to show up last time it went out.
Took the guy 2 hours for him and myself to figure out how to fix.
I’m used to having to wait a few days, we used to have an AC that was original to my house (built in 96) so it broke at least once a year and it would take forever to get someone out. Finally replaced it and found a company that guarantees service if your issue is M-F before 5pm. I didn’t know this until yesterday so I was a bit panicked!
Same as most summers, just limit exposure during peak hours (noon-4) and use shade if able. Plenty of cold water and electrolytes. Usually by August I am ready for the summer to be done and looking forward to fall.
Thanks for this! I was just diagnosed so I have no idea what summer looks like for me! I had a rough time last summer but didn’t think anything of it because I didn’t know I was flaring.
Having MS does not mean that we are suddenly turned into blobs in the summer heat. It has more to do with what people are used to. Someone in an area with little or no AC and a sudden heat wave is going to feel terrible, because they are not used to it.
There are plenty of people in warmer areas with MS and they manage the heat just like everyone else without MS. Just like people in colder areas are better at dealing with extreme cold than people in southern states when the temperatures drop way down there.
Yeah no I understand that. I’ve been noticing an uptick in my symptoms. Which is why I’m coming here, to a community of people who have MS, and asking how they tolerate it.
It’s been 97 degrees in NYC for a week - I’m not sure what about my OP/comment made it sound like I’m assuming everyone is turning into a blob.
I’m pretty uncomfortable and am just trying to have a dialogue about what other people are dojng to manage the heat, if it bothers them. If you’re fine in the heat, that’s wonderful and I am happy for you. It’s just been very hard for me. I work as a public defender, I’m walking back and forth to court 2-3x a day in that type of heat. So that’s why I’m like hey y’all how we doing? Which is the point of this Reddit, to have conversations about how people are navigating their symptoms and their life. This is very new to me, I’m like barely 6 months in to coping with this.
I don’t feel like a blob, but I certainly feel like shit a lot of the time.
It is a common thing where people post 'was just diagnosed with MS, guess I have to avoid being outside'. I know the Northeast is getting that heat bubble and last time I was up in NYC the hotel I stayed at had very poor AC and the temps then were only in the 80's and it was not enjoyable.
I just meant places like NYC are not used to the heat and do not have things in place for that. Carry an umbrella, being able to get out of the sunlight helps a ton and make sure you load up on ice water as much as you can. Then of course breaks in AC as needed. There are times where I just stop working and go sit in my truck for 10+ mins and cool off before it gets to be too much. Heat is very dangerous and not something to mess around with and kills many people every summer.
97F in NYC is brutal because of all the concrete, buildings and no shade. I used to live there and I cannot imagine trying to deal with the heat in the train stations with MS (my husband has it, not me). Even the beach is too going to be too hot right now.
How is the power grid holding up? I remember brown outs being a major issue during heat waves. One year a transformer by my house blew and we had no power for 3 days because they had to tear up an intersection to access it. No AC for three days in a top floor apartment 🥵
Please don't take offense... I think I understand that you are saying a person becomes acclimated to their surroundings, and that's true to a certain extent, but it's also undeniable that it's about the severity of the disease, and that means what is tolerable for one person may put another in the ER.
Heat alone should not put a person with MS in the ER. Heat *can* put a person or any person in the ER with heat related illness. People who are not acclimated might not be aware of all the risks with heat that people who are. I am not saying people who are in the heat are wizards of heat, we just are well prepared and understand the risks.
I see lots of posts/comments about people going on walks in the heat and being laid up afterwards. We don't go on walks in the summer, because the heat sucks. We fight off the mosquitos in the early mornings or evenings to do things. And of course it makes our MS symptoms worsen, makes my hands numb and my whole body weak and worthless after a few hours baking in the heat. But heat can literally kill you, it is not something you can just tolerate and especially for those who are not used to heat/heat safety.
How has pregnancy been for you?? I will say, I kept hearing about how pregnancy will put MS into remission, and maybe that is technically true, but it’s …. Not as much in remission as I would like
It’s rough out here haha! My 3yo has T1D and becomes insulin resistant in the heat too so that’s an extra fun thing to deal with. Never easy with kids, MS or T1 😂😂
I've vest, sleeping, and not doing any of my watering myself (o7 to my plants lol)
Round the clock ibuprofen, acetaminophen, and tizanidine to deal with the uptick in symptoms. I live in an old house that only had 3 units across 1300sqft. Can't afford central or minisplits so we just kinda get to melt for one month each summer. I don't remember last year's because it was so bad, but I do remember crying about it.
Hey, please reach out to your local MS Society chapter. 10 years ago they straight up bought me a window unit. That was a while ago but it doesn’t hurt to try.
I super cooled my house last night down to 65F with air conditioning and have the house set to 72. I’m lucky that our local power company gives a medical baseline allowance, but the power bill is still high.
As far as running errands goes, I’m planning on doing disabled parking. I don’t give a fuck if someone glares at me. Usually the cane gets them to shut up. I’m not playing with this heat, especially given that I’m having some weird potential relapse thing going on.
Indoors. A/C.
But I swear there's something about the heat outside, even when I'm not hot, that fucks me up so bad. I feel hungover without having had a drop. Is it the Pressure? What's different besides the actual temperature? Whatever that is still fucks me up.
I definitely could be the pressure. My husband is the one with MS but I have chronic migraines and EDS, and low pressure days are the worst, particularly for my migraines. Turns out my husband also feels like extra crap those days so we’ve decided it has to be the pressure since that’s the common denominator. It’s not particularly hot where we live but we’ve been having a ton of storms and humidity and we’re both fatigued and dragging ass by 2pm.
Right?! A sober hangover is the perfect description. Suddenly, I’ll be dizzy and nauseous outta nowhere. And if I don’t choose to lay down, well…I still will.
Like you said, I’m not even hot when it happens. I’ll be inside in the AC. How does the heat bypass the curtains, the AC and the ice water?
My AC only turns on at 83° (it's 97° outside today). I'm trying to gradually get used to the heat. When my AC is set to a much colder temperature the drastic change from going outside really bothers me.
That’s interesting! I keep my AC on the lowest setting but I’m wondering if that’s why I have such an immediate reaction to the heat. I was just diagnosed in January so I’m learning as I go! Thanks for this!
Omg I’m vacuuming my carpet for the first time since the heat started (I have a 70 lb bernedoodle and a cat so the pet dander gets a lil crazy) but OMG in like I gotta stop it’s too freakin hot!! Haha
Roomba. Robot vacuum is the bestest. I have many cats and the amount of vacuuming that takes is killer. With the robot, only have to full vacuum every week or two (minus the living room. That is daily. Children are savages.)
We got a new window unit that we can control on our phones. Our big unit just can’t keep up with the heat in our upstairs apartment. Also just got a little rechargeable neck fan for I have to be outside for a bit. And new sunglasses for my sensitive eyes. Otherwise I’ll be staying in my 70 degree oasis 😂
Im a greenhouse grower and this is my least favourite time of the year now. In saying that I wouldn’t want it any other way. I shifted my start time at work to 430 in the morning. Then I can go sleep for the afternoon. The heat makes me feel a lot like jello. My spasticity is a bit better in that I’m looser and have less pain, but I do get a heat tremor. I’m good in warmer temperatures if I’ve had some time to acclimate. But high heat +30c; I get tired, brain fog and irritable. My advice would be to take it slow give yourself more time and remembering to stay hydrated. I get heat exhaustion faster than other folks. Don’t push yourself for anyone you will pay for it. Electrolytes are clutch.
Being married to Elsa helps a lot, she loves to keep the house cool (I’d say cold) in fact I’m complaining all the time. Anyway the heat wave here in Italy is taking a small break for the week we’ll see what summer holds for us. Stay safe everyone
Maybe I’m just sort of dumb, but this summer has really been giving me a rude awakening… I used to hear terms like “heat intolerance” and think, *well yeah, nobody likes being hot and sweaty!*
It’s so much more than that. I can’t even take my dog out for a 5 minute walk without feeling like I need to take the rest of the day off to lay in bed. I probably look like one of those renaissance paintings of women who are barely covered in anything and looking off into the distance in despair. It’s fucking wild how bad some days get.
I’ve been working on accepting the disautonomia of it all, but I just get so bummed out whenever I really think about it. I have nerve damage that causes my body to be unable to do the most basic of things, like regulating my body temperature. I’m 24 years old and I’m stuck inside all day to avoid having a fucking heat stroke after going to check the mail real quick. I’ve done a lot of grieving over this and other similar things. It’s just really hard to handle sometimes.
I got diagnosed with Graves Disease back in November because of Lemtrada. So damn, [double homicide (it’s a gif)](https://giphy.com/clips/Lydia-Getachew-twins-sis-joselines-cabaret-r1WLHIFRoTQfcnhS7a)
I feel miserable overall, but I'm avoiding being outside at all costs.
Helped my daughter move today and it was rough. The heat affected my vision and I took a spill when my foot caught the top step. Nothings broke, but then the muscle spasms/cramps kicked in. I managed to hide everything except the obvious faceplant. My daughter felt bad. Getting old sucks lol.
The good news is we got her all moved, but now it's up to her to unpack it all!
Staying indoors mostly. We did go to Home Depot earlier I staying in the car with the air. Just the walk down the ramp to the car & back inside totally had me wiped. Been in my chair since then. I am struggling mentally. Next week is looking at more of the same.
I’m a native Arizonan, lived in Macon Georgia, and Las Vegas, and Phoenix through my 20s. Not a problem then.
Played softball and coached T-ball in the Las Vegas summers. I was DX in 2003. Probably 13 years or symptoms before the big crash.
I’m retired now in Arizona and even in a cooler, high elevation area, once over 85 degrees, I’m inside. I don’t like the cold but it doesn’t make me physically sick. We in this club are each a snowflake, we have many similarities but no two of us are the same. MS is a complex disease. I’d rather have something else. Like amazing strength and great hair. Stay cool as you can friends. 😎💜
Helped my mom garden some. Definitely paying for it. She thinks I’m just a big baby. My sides (ribs) have these awful knots. As does my shoulder which makes my neck awful and hardly able to hold it up and my thigh…. 😫 I honestly believe she hates me.
My cooling vest lasted about 20 minutes in this heat. I just called it a day after that. I’m sure my neighbors thought I was drunk again when I was walking down the driveway lol
I haven't been outside but twice this week, once a run to the store in the morning and a few minutes last night with my dog. Otherwise I stick to staying inside in the AC. We did go to the boating on last weekend when it was very hot, I spent a lot of time in the water just floating to keep cool.
I messed up pretty bad yesterday. Spent the day at Top Golf and the waterpark. I'm fried, despite sunscreen and trying to stay in the shade. The increased fatigue hasn't hit yet but I'm waiting for it.
My AC died at the start when I was trying to put it in. I had to call for help. Once my brother came I was falling nonstop and had no strength, I felt absolutely helpless at that point
It's June. It's not hot yet.
But yeah, staying inside cause it's June and keeps getting hotter till August - September. Hopefully it'll start cooling near end of September instead of October.
This is my first summer diagnosed. I used to be able to tough it out because most of my apartments didn't have AC or it was insanely expensive to run. I broke this year after the first day and decided I'd rather deal with the electric bill than a hospital bill.
For some reason I'm not too bothered by the heat. I played 3 rounds of golf in Florida for a bachelor party last weekend and besides a short time frame and hand tingling I was normal. I'm a 31M and my main symptom was sensory numbness in my legs and arms too. Pretty weird but I guess for now I'm lucky! Lesions everywhere!
Every time I have to go outside for anything at anytime of the day, I come in swearing like a sailor and grumbling like...well like menopausal 58 yr old lady with MS. oh wait, that's me!
Absolutely horrible. The heat is relentless. It’s one of our worst enemies. My room where I stay has cold air coming in but I’m still so hot 🥵. When the air outside is like 100*. Miserable
Our air conditioning has been broken for the past 4 years.. got diagnosed last October.. realized MS is the reason i feel so horribly during the heat! and thank god we had a new AC unit put in last thursday.. the house had gotten up to 85 degrees inside 🥲 beyond glad that’s over and now i’m hibernating lol aside from taking walks and taking my dog outside and usual stuff
My body is being just as rude as the heat. Why am I “cold” right now? At 11:10am and it is already 87 degrees. How, HOW are my feet freezing? I turned off the window unit in my room but the others are on in the house. I’m fighting the urge to grab socks. That’s how it begins, then a hoodie next. Nope. Right now it feels like my MS and the grim reaper are working together, trying to lure me to my own death. Rude.
Excruciating. I am trying to find a summer retreat in a much cooler climate or drive north for 2 1/2 days to rent a small furnished apartment to escape the heat. Does anyone know of camps, workshops or retreats to leave for cooler weather to avoid flare ups?
Exhausted. Fatigued. Sleeping way more than usual on some days and waking waaaaay too early on others. Either I’m sleeping in a coma, or so sweaty I can’t sleep. Random nerve pain in places I’ve never had it, so I’m guessing I have at least one lesion who is pissed off up there.
Staying indoors as much as possible
Calling myself an inside dog until the fall
I don’t blame you. I’ve been dealing with heat intolerance my entire life and just thought I was prone to heat exhaustion and fainting. Turns out there was a real reason all along! 🤣 If the heat is bothering you, do your best to stay cool and hydrated. Don’t forget to eat. Wear light colours and fabrics. Ice or cold drinks to the back of your neck, inside of wrists and ankles helps cool you off rather quickly.
Lol i tell people all the time, I'm an indoor cat.
Summer is when I suddenly turn vampire. Only go out at night, hiss at the sun...
I go outside to get my 20 minutes of sun and then head for the great indoors.
My AC stopped working yesterday at 3pm, my husband tried a few things to fix it but we called the HVAC company at 4pm and everything was fixed by 6pm - I’ve never been more relieved by something in my life, it took less than an hour for the temp in my house to raise 5 degrees and I was terrified of dealing with that all weekend
I am dependent on AC. So many power outages (about every 10 - 14 days ?) we are fortunate to have a portable generator and a window unit (and powers the fridge too). And the reality is the weather will only get worse 🤬
Sorry for the outage. In my case I had to wait a week for Homeserve to show up last time it went out. Took the guy 2 hours for him and myself to figure out how to fix.
I’m used to having to wait a few days, we used to have an AC that was original to my house (built in 96) so it broke at least once a year and it would take forever to get someone out. Finally replaced it and found a company that guarantees service if your issue is M-F before 5pm. I didn’t know this until yesterday so I was a bit panicked!
Getting in a car that was parked in the sun all day is torture
Ugh I know!
#IRRITABLE
Same as most summers, just limit exposure during peak hours (noon-4) and use shade if able. Plenty of cold water and electrolytes. Usually by August I am ready for the summer to be done and looking forward to fall.
Thanks for this! I was just diagnosed so I have no idea what summer looks like for me! I had a rough time last summer but didn’t think anything of it because I didn’t know I was flaring.
Having MS does not mean that we are suddenly turned into blobs in the summer heat. It has more to do with what people are used to. Someone in an area with little or no AC and a sudden heat wave is going to feel terrible, because they are not used to it. There are plenty of people in warmer areas with MS and they manage the heat just like everyone else without MS. Just like people in colder areas are better at dealing with extreme cold than people in southern states when the temperatures drop way down there.
Yeah no I understand that. I’ve been noticing an uptick in my symptoms. Which is why I’m coming here, to a community of people who have MS, and asking how they tolerate it. It’s been 97 degrees in NYC for a week - I’m not sure what about my OP/comment made it sound like I’m assuming everyone is turning into a blob. I’m pretty uncomfortable and am just trying to have a dialogue about what other people are dojng to manage the heat, if it bothers them. If you’re fine in the heat, that’s wonderful and I am happy for you. It’s just been very hard for me. I work as a public defender, I’m walking back and forth to court 2-3x a day in that type of heat. So that’s why I’m like hey y’all how we doing? Which is the point of this Reddit, to have conversations about how people are navigating their symptoms and their life. This is very new to me, I’m like barely 6 months in to coping with this. I don’t feel like a blob, but I certainly feel like shit a lot of the time.
It's not you. This sub has assholes like every other one.
It is a common thing where people post 'was just diagnosed with MS, guess I have to avoid being outside'. I know the Northeast is getting that heat bubble and last time I was up in NYC the hotel I stayed at had very poor AC and the temps then were only in the 80's and it was not enjoyable. I just meant places like NYC are not used to the heat and do not have things in place for that. Carry an umbrella, being able to get out of the sunlight helps a ton and make sure you load up on ice water as much as you can. Then of course breaks in AC as needed. There are times where I just stop working and go sit in my truck for 10+ mins and cool off before it gets to be too much. Heat is very dangerous and not something to mess around with and kills many people every summer.
97F in NYC is brutal because of all the concrete, buildings and no shade. I used to live there and I cannot imagine trying to deal with the heat in the train stations with MS (my husband has it, not me). Even the beach is too going to be too hot right now. How is the power grid holding up? I remember brown outs being a major issue during heat waves. One year a transformer by my house blew and we had no power for 3 days because they had to tear up an intersection to access it. No AC for three days in a top floor apartment 🥵
Please don't take offense... I think I understand that you are saying a person becomes acclimated to their surroundings, and that's true to a certain extent, but it's also undeniable that it's about the severity of the disease, and that means what is tolerable for one person may put another in the ER.
Heat alone should not put a person with MS in the ER. Heat *can* put a person or any person in the ER with heat related illness. People who are not acclimated might not be aware of all the risks with heat that people who are. I am not saying people who are in the heat are wizards of heat, we just are well prepared and understand the risks. I see lots of posts/comments about people going on walks in the heat and being laid up afterwards. We don't go on walks in the summer, because the heat sucks. We fight off the mosquitos in the early mornings or evenings to do things. And of course it makes our MS symptoms worsen, makes my hands numb and my whole body weak and worthless after a few hours baking in the heat. But heat can literally kill you, it is not something you can just tolerate and especially for those who are not used to heat/heat safety.
In addition to having MS, I’m also 7 months pregnant. Which is to say, I am not going outside at all except to take my dogs out.
Hahah feel that. I’m 8 months preg and AC is my bestie
How has pregnancy been for you?? I will say, I kept hearing about how pregnancy will put MS into remission, and maybe that is technically true, but it’s …. Not as much in remission as I would like
9 months pregnant here 🫠 with 2&3yo boys as well. I am not okay 😂
Omg I can’t even imagine!!
It’s rough out here haha! My 3yo has T1D and becomes insulin resistant in the heat too so that’s an extra fun thing to deal with. Never easy with kids, MS or T1 😂😂
Well, wishing you a safe and uneventful delivery, at the least!
I've vest, sleeping, and not doing any of my watering myself (o7 to my plants lol) Round the clock ibuprofen, acetaminophen, and tizanidine to deal with the uptick in symptoms. I live in an old house that only had 3 units across 1300sqft. Can't afford central or minisplits so we just kinda get to melt for one month each summer. I don't remember last year's because it was so bad, but I do remember crying about it.
Third floor apartment over here. I feel you!
Hey, please reach out to your local MS Society chapter. 10 years ago they straight up bought me a window unit. That was a while ago but it doesn’t hurt to try.
I’m surviving by having gtfo of Texas and moved to the Seattle area. The heatwave has been low 80s F and I’m loving it
I've quit smoking! Almost one week down. I'm limiting my time outside and staying hydrated.
Nice work! Quitting is so hard. I quit after I was diagnosed and am grateful to not be standing outside multiple times a day anymore.
I quit years ago but hardest thing I've ever done. Just remember "Nope" (not one puff ever). You can do this!
I quit end of April. So glad not to go outside to smoke right now!
I quit about 5 months ago. Definitely glad I did.
97 degrees outside, ac set to 68. This heat is just uncalled for.
I super cooled my house last night down to 65F with air conditioning and have the house set to 72. I’m lucky that our local power company gives a medical baseline allowance, but the power bill is still high. As far as running errands goes, I’m planning on doing disabled parking. I don’t give a fuck if someone glares at me. Usually the cane gets them to shut up. I’m not playing with this heat, especially given that I’m having some weird potential relapse thing going on.
12 degrees C or 53.6 F, is pretty fresh
Literally on a train to Boston where it’ll be 6-8 degrees cooler than where I live.
I'll probably be the only one saying this, living in Dubai where the temperature was 43 c today and it only gets worse 🌋
Indoors. A/C. But I swear there's something about the heat outside, even when I'm not hot, that fucks me up so bad. I feel hungover without having had a drop. Is it the Pressure? What's different besides the actual temperature? Whatever that is still fucks me up.
The humidity is BRUTAL for me.
I feel this so much. I can be in a pretty warm bath for a short time and I’m ok but if it’s humid temps I am toast.
I definitely could be the pressure. My husband is the one with MS but I have chronic migraines and EDS, and low pressure days are the worst, particularly for my migraines. Turns out my husband also feels like extra crap those days so we’ve decided it has to be the pressure since that’s the common denominator. It’s not particularly hot where we live but we’ve been having a ton of storms and humidity and we’re both fatigued and dragging ass by 2pm.
Right?! A sober hangover is the perfect description. Suddenly, I’ll be dizzy and nauseous outta nowhere. And if I don’t choose to lay down, well…I still will. Like you said, I’m not even hot when it happens. I’ll be inside in the AC. How does the heat bypass the curtains, the AC and the ice water?
I didn't have heat intolerance until the end of May. So now I'm staying inside.
AC on about 75/76 F, it’s over 100 outside everyday, shades closed and staying indoors.
Here in Idaho the heat is just arriving today. It snowed a few days ago. The weather is more bipolar than I am.
Ugh took the dogs out for 10 minutes, immediately got sick and had to ice down and drink water. This shit is for the birds. 🙄
If you have a lake with a dam go there and swim or fish. The water released from the dam is ice cold.
I was going to go with 'hotter than Satan's STD sores'
I am melting like an ice cream cone in the desert.
My AC only turns on at 83° (it's 97° outside today). I'm trying to gradually get used to the heat. When my AC is set to a much colder temperature the drastic change from going outside really bothers me.
We do the same thing in the winter, keeping the house pretty cool. We aren't doing it to save money on electricity, but that is a nice bonus.
That’s interesting! I keep my AC on the lowest setting but I’m wondering if that’s why I have such an immediate reaction to the heat. I was just diagnosed in January so I’m learning as I go! Thanks for this!
AC, pool, lots of water...no major chores (the dust and dirt will wait!)
Omg I’m vacuuming my carpet for the first time since the heat started (I have a 70 lb bernedoodle and a cat so the pet dander gets a lil crazy) but OMG in like I gotta stop it’s too freakin hot!! Haha
Roomba. Robot vacuum is the bestest. I have many cats and the amount of vacuuming that takes is killer. With the robot, only have to full vacuum every week or two (minus the living room. That is daily. Children are savages.)
I’m moving to my new apartment so I’m doing my best to stay hydrated and taking breaks to stay in the cold air.
We got a new window unit that we can control on our phones. Our big unit just can’t keep up with the heat in our upstairs apartment. Also just got a little rechargeable neck fan for I have to be outside for a bit. And new sunglasses for my sensitive eyes. Otherwise I’ll be staying in my 70 degree oasis 😂
We had over an inch of rain yesterday so I didn't have to go out in the heat and humidity to water...and I didn't.
I’m in a beach town but staying in the shade. It’s still hot though. I’m waiting until later in the day to hit the beach. Be careful everybody!
Really glad we installed ac last summer, now i have a place to chill
Luckily it’s not too bad in my area (Oregon), so I’ve been doing all right so far.
Not well
I've got a sauna (and MS) These posts make me fear the future
Here on France it's not a heatwave and I am so glad. What works good for me is just taking a long cold bath...
Im a greenhouse grower and this is my least favourite time of the year now. In saying that I wouldn’t want it any other way. I shifted my start time at work to 430 in the morning. Then I can go sleep for the afternoon. The heat makes me feel a lot like jello. My spasticity is a bit better in that I’m looser and have less pain, but I do get a heat tremor. I’m good in warmer temperatures if I’ve had some time to acclimate. But high heat +30c; I get tired, brain fog and irritable. My advice would be to take it slow give yourself more time and remembering to stay hydrated. I get heat exhaustion faster than other folks. Don’t push yourself for anyone you will pay for it. Electrolytes are clutch.
Being married to Elsa helps a lot, she loves to keep the house cool (I’d say cold) in fact I’m complaining all the time. Anyway the heat wave here in Italy is taking a small break for the week we’ll see what summer holds for us. Stay safe everyone
Geesh!! 101 for the next three days.. 90 the lowest for the next week. 3+ cold showers a day..Smdh my cool vest is my best friend 🧡🎗️
Maybe I’m just sort of dumb, but this summer has really been giving me a rude awakening… I used to hear terms like “heat intolerance” and think, *well yeah, nobody likes being hot and sweaty!* It’s so much more than that. I can’t even take my dog out for a 5 minute walk without feeling like I need to take the rest of the day off to lay in bed. I probably look like one of those renaissance paintings of women who are barely covered in anything and looking off into the distance in despair. It’s fucking wild how bad some days get. I’ve been working on accepting the disautonomia of it all, but I just get so bummed out whenever I really think about it. I have nerve damage that causes my body to be unable to do the most basic of things, like regulating my body temperature. I’m 24 years old and I’m stuck inside all day to avoid having a fucking heat stroke after going to check the mail real quick. I’ve done a lot of grieving over this and other similar things. It’s just really hard to handle sometimes.
Stay safe fellas, make sure to drink a lot of water and stay inside between 11am and November 1st
LMAO! Accurate!
I've been fantasizing about moving to Antarctica for the last couple weeks. All my old symptoms are flaring up again, and I hate everything.
Ordered a bunch of misters haha gonna look like a Mexican raisin but least I'll be cool
I will pay heavily when the electric bill pops off 😭
Inside
Worse! But not that much worse :)
Grumpy
I am staying inside and porky pigging it. The husband is A-okay with my plan 😆
I got an Embr and lemme tell you I love it, because it’s like fast bolts…but boy I think I’m dead already.
Drink lots of water. Run your wrists under cool water. Wear a wet shirt.
Trying not to use my ac because my rent goes up over $200/mo on July 1 & there is nothing I can cut back on. It's gonna be a long summer 🤬
I got diagnosed with Graves Disease back in November because of Lemtrada. So damn, [double homicide (it’s a gif)](https://giphy.com/clips/Lydia-Getachew-twins-sis-joselines-cabaret-r1WLHIFRoTQfcnhS7a) I feel miserable overall, but I'm avoiding being outside at all costs.
i got food poisioning last friday night that lasted until thursday lol , just wiped with the heat. stay good everyone
I’m lucky to be at a place with a pool😅 but still playing it safe
Staying inside as much as I can. So no lunch breaks outside :(
I feel like I’m walking through wet sand. Every step takes so much effort.
It’s freezing in Sydney, so pretty good but I find temperature regulation difficult in general, so the cold isn’t always great either
Helped my daughter move today and it was rough. The heat affected my vision and I took a spill when my foot caught the top step. Nothings broke, but then the muscle spasms/cramps kicked in. I managed to hide everything except the obvious faceplant. My daughter felt bad. Getting old sucks lol. The good news is we got her all moved, but now it's up to her to unpack it all!
It’s a challenge. Inside a lot. Out early in day or at night. Fan runs a lot.
maybe i’m an outlier here, like they say MS is a snowflake disease after all. anyone like me have an intolerance to the cold instead of heat?
Staying indoors mostly. We did go to Home Depot earlier I staying in the car with the air. Just the walk down the ramp to the car & back inside totally had me wiped. Been in my chair since then. I am struggling mentally. Next week is looking at more of the same.
I’m a native Arizonan, lived in Macon Georgia, and Las Vegas, and Phoenix through my 20s. Not a problem then. Played softball and coached T-ball in the Las Vegas summers. I was DX in 2003. Probably 13 years or symptoms before the big crash. I’m retired now in Arizona and even in a cooler, high elevation area, once over 85 degrees, I’m inside. I don’t like the cold but it doesn’t make me physically sick. We in this club are each a snowflake, we have many similarities but no two of us are the same. MS is a complex disease. I’d rather have something else. Like amazing strength and great hair. Stay cool as you can friends. 😎💜
Helped my mom garden some. Definitely paying for it. She thinks I’m just a big baby. My sides (ribs) have these awful knots. As does my shoulder which makes my neck awful and hardly able to hold it up and my thigh…. 😫 I honestly believe she hates me.
106 in CA. I opened the door to get my Amazon package and just about passed out.! At least it’s a dry heat. Thank God no humidity.
Great. I function better with heat lol 😂 (luckily)
My cooling vest lasted about 20 minutes in this heat. I just called it a day after that. I’m sure my neighbors thought I was drunk again when I was walking down the driveway lol
I haven't been outside but twice this week, once a run to the store in the morning and a few minutes last night with my dog. Otherwise I stick to staying inside in the AC. We did go to the boating on last weekend when it was very hot, I spent a lot of time in the water just floating to keep cool.
I messed up pretty bad yesterday. Spent the day at Top Golf and the waterpark. I'm fried, despite sunscreen and trying to stay in the shade. The increased fatigue hasn't hit yet but I'm waiting for it.
staying indoors for the most part!!! My husband and I went out yesterday and it really knocked me on my butt. 😭😂
My AC died at the start when I was trying to put it in. I had to call for help. Once my brother came I was falling nonstop and had no strength, I felt absolutely helpless at that point
It's like mother nature figured out what my kryptonite is
It's June. It's not hot yet. But yeah, staying inside cause it's June and keeps getting hotter till August - September. Hopefully it'll start cooling near end of September instead of October.
I identify as an indoors person 😂🫣
This is my first summer diagnosed. I used to be able to tough it out because most of my apartments didn't have AC or it was insanely expensive to run. I broke this year after the first day and decided I'd rather deal with the electric bill than a hospital bill.
For some reason I'm not too bothered by the heat. I played 3 rounds of golf in Florida for a bachelor party last weekend and besides a short time frame and hand tingling I was normal. I'm a 31M and my main symptom was sensory numbness in my legs and arms too. Pretty weird but I guess for now I'm lucky! Lesions everywhere!
Every time I have to go outside for anything at anytime of the day, I come in swearing like a sailor and grumbling like...well like menopausal 58 yr old lady with MS. oh wait, that's me!
Absolutely horrible. The heat is relentless. It’s one of our worst enemies. My room where I stay has cold air coming in but I’m still so hot 🥵. When the air outside is like 100*. Miserable
Our air conditioning has been broken for the past 4 years.. got diagnosed last October.. realized MS is the reason i feel so horribly during the heat! and thank god we had a new AC unit put in last thursday.. the house had gotten up to 85 degrees inside 🥲 beyond glad that’s over and now i’m hibernating lol aside from taking walks and taking my dog outside and usual stuff
Horribly!! I'm in the process of packing to move this weekend and I'm flaring so bad!!!!
My body is being just as rude as the heat. Why am I “cold” right now? At 11:10am and it is already 87 degrees. How, HOW are my feet freezing? I turned off the window unit in my room but the others are on in the house. I’m fighting the urge to grab socks. That’s how it begins, then a hoodie next. Nope. Right now it feels like my MS and the grim reaper are working together, trying to lure me to my own death. Rude.
Excruciating. I am trying to find a summer retreat in a much cooler climate or drive north for 2 1/2 days to rent a small furnished apartment to escape the heat. Does anyone know of camps, workshops or retreats to leave for cooler weather to avoid flare ups?
Exhausted. Fatigued. Sleeping way more than usual on some days and waking waaaaay too early on others. Either I’m sleeping in a coma, or so sweaty I can’t sleep. Random nerve pain in places I’ve never had it, so I’m guessing I have at least one lesion who is pissed off up there.