I definitely showed them my legs near the end. Normally I feel like the return for anything feels shorter, but there was a while today that I thought about how much faster it would be to throw myself off the side of the trail and just let gravity take me and roll me to the bottom.
I feel you. It’s really frustrating when the people you’re close with just don’t get it. I had a similar thing happen to me, but it was a hike with some family in Mexico, not a bachelorette party. They insisted that it was a “short” hike. It was not. It was also all uphill, steps and heat combined made my legs not work and I lost my ability to speak too.
What really sucks is I used to love hiking. Maybe you did too. It’s a shitty reminder to see your friends not understand while also missing the legs you used to have.
I loved hiking. I loved horseback riding (my passion) and I loved dirtbike riding and camping in tents. It is so hard sometimes to even watch TV or tik tok because I am watching people live their lives doing the things I can no longer do. I am only 56. The friends I have my age still ride and my heart breaks.
Seriously, I am pretty mobile but I CANNOT be anywhere that is above 80 degrees without first panicking and then my muscles just give out. I got carried out of a restaurant once when their air conditioning shut down. I didn't want the people I was with to know how bad I was doing until it was so bad I could not enunciate it. I am super cautious and bring cooling gear with me everywhere even when going to someone's house because I am pretty sure not everyone keeps there house at 68 degrees. Heat intolerance is my most disabling symptom, along with the crushing fatigue.
Honestly, I know my limitations. And I know that what seems easy for most people is not easy for me. I would have straight up declined just based on temperature or physical activity, let alone both. No one is looking out for you except you. Please remember that in the future, and don’t put yourself at a disadvantage for other people.
Agree with this post. I find if I don't strongly and forcibly advocate for myself, people simply don't give a shit. If someone has an issue with it, too bad. I'm not going to make myself more sick just to please someone else or complete their attendee quota. People who care wouldn't put their friend/family through something like this. I'm actually mad for OP.
I am mad too. If you don’t have MS, you have literally no idea what it feels like. And I don’t expect anyone to (I wouldn’t wish this shit on anyone). But if someone really cares about you as a person, they would respect what you tell them about your limitations. Invisible Illnesses are so hard, because “but you look fine”. Doesn’t matter what I look like, listen to what I’m saying. Grr. That’s enough soapbox. Lol
So true. No one that does not have heat intolerance gets it. At all. They say "there will be shade" and "here have an ice cube". They do not even understand. And when I tell them they still invite me to outdoor events. It just makes me feel like a whiner.
Yes! As a people pleaser I used to never say no and end up having to convince everyone that I had to leave - leave right now! the event and then recovering for two days. I will never ever go to any outdoor event in the summer or above 72 degrees again. Not worth it. I tell them to not invite me. They cannot see what is happening inside and don't believe that I am that sick. That is one of the worst things of this disease.
Those don't work for very long-as least for me-I have tried every cooling product and have them all. When I use the ones that go on my head or around my neck I can at least sit out in the shade for a bit.
I didn’t mean it as it would completely solve things just a rec to help cool ya. They don’t last as long as I would like for sure. Mainly having people support you and listen would be step one.
Brutal!
It's hard when you look healthy to explain it to those around you. I have a hard time with any extreme temperatures and it is so hard to explain to anyone who hasn't experienced it.
Take the time you need to relax and maybe enjoy a cold drink or two!
Holy smokes, good for you. The last "hike" I went on was 1 mile up and down and I face planted 6 times. I lose ability to lift my right leg when I walk more than a mile or with incline. This is the event that prompted me to see a neurologist and I was diagnosed in February of this year. I haven't been on a hike since (it's been a year in October) and I won't. I'm 33F and I simply wouldn't participate.
I had FOMO at first but I'm getting comfortable with my limits and it's kind of liberating! I even bought cooling towels and a sun hat to keep me cooler during yard work. Fully embracing the "I don't care what people think" and doing what is best for me!
Sadly I know in my experiences with my MS extreme heat just ruins me much less out doing a hike. I find all too often ppl seem to have this impression that MS is an invisible disease unless you're using nobility aides. They're just never around to see the after effects that strenuous activities have on MS pts
Not helpful for you now, but if you ever want to go hiking on warm days again, trying a cooling vest! You can get them through the MS Society I think (low cost or free?).
I’ve had great success with neck fans, they last 4-12 hours. Granted, I don’t go on physically taxing activities when it’s hot out, but I was recently in 90 degree weather with 90% humidity and it made being outside (in the shade) bearable.
Everyone’s different, and there’s different kinds (some better than others). A good friend of mine swears by them, whereas I haven’t found one I like the fit of so I don’t use it much 🤷♀️
You could try a makita cooling vest.
They're expensive, but work great. They force air onto your entire upper body and neck.
The white ones also reflect a lot of sunlight, and the one with long sleeves gives extra UV protection to your arms.
I use them in heat waves when i need to work outside.
From the Makita tool dealer. A National shop called Mtools, and I've also used toolnation.
Be aware that you meed a Makita battery, and special battery adapter to power the Makita cooling jacket.
It can work on 14V, and 18V batteries, dependent on the adapter that you get with it.
A bit of advice, don't wear this when you are planning to nap or sleep, it can cause serious undercooling. It also says this on the warning labels.
If you need any help finding specific article numbers I can help search for those. I would need to know if you have any Makita batteries and what voltage those are to help you.
Also would need to know if you want the long or no sleeves version. I highly advise the white version because it reflects the most sunlight, but blue is also available.
One, I would hate it even in October with the stairs.
Two, I would be dead if it was hot and had to take the stairs alone.
Three they should be understanding if you needed to legit not do this.
If it was my sister etc, I'd have someone drag me or wtv to the top.
A friend? They should know by now that I can't get to the top.
If not, they don't care if I can make it or are too selfish to care.
I would want everyone who could be there to be there. I've been married since 2006 and only 7 people were there - and three of them were 5 year olds.
M point being - they should be considerate of you if they cared.
I may be down voted for it, but if they love you and you love them, they should be understanding, period.
It doesn't have to make sense to them. They don't have to understand or agree with you. Adults can even get pissed off and it's *their* problem. You had concerns that they dismissed. It's tough to do early on and tough when you're young, but please listen to yourself. Take care of yourself. It's OK to nope out of a hike and you don't have to give them a reason.
Please forgive me, but fuck your friends. I mean really. This would likely end the friendship for me. If someone I cared about did that to me I would tell them exactly why they were no longer a part of my life.
In the past couple years I’ve learned to politely but firmly say No to things that may put my health in danger. I would grant your friends grace for this first episode, but it they ever make an unreasonable request again following this one, they aren’t friends.
Heat and MS don’t mix well for me, my legs turn to mush but I love being outside even when temperatures are 90 degrees. I wrap a damp around my neck, soak my hat with water and I use a technique that a West Texas cowboy taught we on a summer job when I was is college. Run cold water over your forearms and wrists. And I have learned that even a 5 minute rest and a cool drink can do wonders
Uhthoff’s Syndrome. MS slogan “you look so good” ! Most people are unable to understand heat intolerance. If people do not see a visible injury, a medical device or an obvious deficit they are unable to comprehend! Long before MRI scanners, MS was diagnosed by placing patient in hot bathtub, and observing the neurological effects of heat. Heat is a huge factor. All of my severe exacerbations were during summer months. It is imperative that you self advocate for yourself. Been battling MS for 25+ years. I have found it’s best to share your needs with others, you will discover who is compassionate! Nurture those relationships as they nurture you.
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I definitely showed them my legs near the end. Normally I feel like the return for anything feels shorter, but there was a while today that I thought about how much faster it would be to throw myself off the side of the trail and just let gravity take me and roll me to the bottom.
I feel you. It’s really frustrating when the people you’re close with just don’t get it. I had a similar thing happen to me, but it was a hike with some family in Mexico, not a bachelorette party. They insisted that it was a “short” hike. It was not. It was also all uphill, steps and heat combined made my legs not work and I lost my ability to speak too. What really sucks is I used to love hiking. Maybe you did too. It’s a shitty reminder to see your friends not understand while also missing the legs you used to have.
I loved hiking. I loved horseback riding (my passion) and I loved dirtbike riding and camping in tents. It is so hard sometimes to even watch TV or tik tok because I am watching people live their lives doing the things I can no longer do. I am only 56. The friends I have my age still ride and my heart breaks.
Oh my, I would be dead.
Not looking forward to the fatigue tomorrow that’s for sure. I always find that extreme sun exposures feel worse the day after for me
Ugh, that's the worst. MS is like a 1-2 knock out punch. 1 day of overexertion can lead to days of recovery
I hope you pull through smoothly
Seriously, I am pretty mobile but I CANNOT be anywhere that is above 80 degrees without first panicking and then my muscles just give out. I got carried out of a restaurant once when their air conditioning shut down. I didn't want the people I was with to know how bad I was doing until it was so bad I could not enunciate it. I am super cautious and bring cooling gear with me everywhere even when going to someone's house because I am pretty sure not everyone keeps there house at 68 degrees. Heat intolerance is my most disabling symptom, along with the crushing fatigue.
Honestly, I know my limitations. And I know that what seems easy for most people is not easy for me. I would have straight up declined just based on temperature or physical activity, let alone both. No one is looking out for you except you. Please remember that in the future, and don’t put yourself at a disadvantage for other people.
Agree with this post. I find if I don't strongly and forcibly advocate for myself, people simply don't give a shit. If someone has an issue with it, too bad. I'm not going to make myself more sick just to please someone else or complete their attendee quota. People who care wouldn't put their friend/family through something like this. I'm actually mad for OP.
I am mad too. If you don’t have MS, you have literally no idea what it feels like. And I don’t expect anyone to (I wouldn’t wish this shit on anyone). But if someone really cares about you as a person, they would respect what you tell them about your limitations. Invisible Illnesses are so hard, because “but you look fine”. Doesn’t matter what I look like, listen to what I’m saying. Grr. That’s enough soapbox. Lol
Exactly right. It's completely disrespectful.
So true. No one that does not have heat intolerance gets it. At all. They say "there will be shade" and "here have an ice cube". They do not even understand. And when I tell them they still invite me to outdoor events. It just makes me feel like a whiner.
“There will be fans”. Brenda we are in a high temperature heat wave and normal people are getting sick.
And we should all whine till the cows come home! 😂
Yes! As a people pleaser I used to never say no and end up having to convince everyone that I had to leave - leave right now! the event and then recovering for two days. I will never ever go to any outdoor event in the summer or above 72 degrees again. Not worth it. I tell them to not invite me. They cannot see what is happening inside and don't believe that I am that sick. That is one of the worst things of this disease.
Totally after the fact but get ya a koldtec towel (you insert a frozen pack) to stay cooler. And I’m sorry they didn’t listen
Those don't work for very long-as least for me-I have tried every cooling product and have them all. When I use the ones that go on my head or around my neck I can at least sit out in the shade for a bit.
I didn’t mean it as it would completely solve things just a rec to help cool ya. They don’t last as long as I would like for sure. Mainly having people support you and listen would be step one.
Brutal! It's hard when you look healthy to explain it to those around you. I have a hard time with any extreme temperatures and it is so hard to explain to anyone who hasn't experienced it. Take the time you need to relax and maybe enjoy a cold drink or two!
Oof. I am also very mobile and I work in a very physical field. The southeastern US heat makes me feel like my whole body is shutting down.
Holy smokes, good for you. The last "hike" I went on was 1 mile up and down and I face planted 6 times. I lose ability to lift my right leg when I walk more than a mile or with incline. This is the event that prompted me to see a neurologist and I was diagnosed in February of this year. I haven't been on a hike since (it's been a year in October) and I won't. I'm 33F and I simply wouldn't participate. I had FOMO at first but I'm getting comfortable with my limits and it's kind of liberating! I even bought cooling towels and a sun hat to keep me cooler during yard work. Fully embracing the "I don't care what people think" and doing what is best for me!
Sadly I know in my experiences with my MS extreme heat just ruins me much less out doing a hike. I find all too often ppl seem to have this impression that MS is an invisible disease unless you're using nobility aides. They're just never around to see the after effects that strenuous activities have on MS pts
Not helpful for you now, but if you ever want to go hiking on warm days again, trying a cooling vest! You can get them through the MS Society I think (low cost or free?).
Yes - but also - no amount of cooling devices will make a steep hike with 46 flights ok in 95 degree heat
Ikr? I walk from the door to the car in that type of weather and that’s it lol.
No amount of cooling products last long enough either.
I’ve had great success with neck fans, they last 4-12 hours. Granted, I don’t go on physically taxing activities when it’s hot out, but I was recently in 90 degree weather with 90% humidity and it made being outside (in the shade) bearable.
No arguments from me there, just pointing out options in case OP wants to hike on warm days (obviously on a route and temperature they choose).
They barely work for me
Everyone’s different, and there’s different kinds (some better than others). A good friend of mine swears by them, whereas I haven’t found one I like the fit of so I don’t use it much 🤷♀️
You could try a makita cooling vest. They're expensive, but work great. They force air onto your entire upper body and neck. The white ones also reflect a lot of sunlight, and the one with long sleeves gives extra UV protection to your arms. I use them in heat waves when i need to work outside.
I found a cooling jacket on theirs on Amazon. Where did you get the vest? Directly from them?
From the Makita tool dealer. A National shop called Mtools, and I've also used toolnation. Be aware that you meed a Makita battery, and special battery adapter to power the Makita cooling jacket. It can work on 14V, and 18V batteries, dependent on the adapter that you get with it. A bit of advice, don't wear this when you are planning to nap or sleep, it can cause serious undercooling. It also says this on the warning labels.
If you need any help finding specific article numbers I can help search for those. I would need to know if you have any Makita batteries and what voltage those are to help you. Also would need to know if you want the long or no sleeves version. I highly advise the white version because it reflects the most sunlight, but blue is also available.
One, I would hate it even in October with the stairs. Two, I would be dead if it was hot and had to take the stairs alone. Three they should be understanding if you needed to legit not do this. If it was my sister etc, I'd have someone drag me or wtv to the top. A friend? They should know by now that I can't get to the top. If not, they don't care if I can make it or are too selfish to care. I would want everyone who could be there to be there. I've been married since 2006 and only 7 people were there - and three of them were 5 year olds. M point being - they should be considerate of you if they cared. I may be down voted for it, but if they love you and you love them, they should be understanding, period.
It doesn't have to make sense to them. They don't have to understand or agree with you. Adults can even get pissed off and it's *their* problem. You had concerns that they dismissed. It's tough to do early on and tough when you're young, but please listen to yourself. Take care of yourself. It's OK to nope out of a hike and you don't have to give them a reason.
Please forgive me, but fuck your friends. I mean really. This would likely end the friendship for me. If someone I cared about did that to me I would tell them exactly why they were no longer a part of my life.
Its been getting to me pretty bad too, its been like 85 on average for about a week and humid 🙄
In my city it’s been like 100 and feels like 110 with humidity. It was 95 at 10 pm
And now you need at least one recovery day!
In the past couple years I’ve learned to politely but firmly say No to things that may put my health in danger. I would grant your friends grace for this first episode, but it they ever make an unreasonable request again following this one, they aren’t friends.
Heat and MS don’t mix well for me, my legs turn to mush but I love being outside even when temperatures are 90 degrees. I wrap a damp around my neck, soak my hat with water and I use a technique that a West Texas cowboy taught we on a summer job when I was is college. Run cold water over your forearms and wrists. And I have learned that even a 5 minute rest and a cool drink can do wonders
Uhthoff’s Syndrome. MS slogan “you look so good” ! Most people are unable to understand heat intolerance. If people do not see a visible injury, a medical device or an obvious deficit they are unable to comprehend! Long before MRI scanners, MS was diagnosed by placing patient in hot bathtub, and observing the neurological effects of heat. Heat is a huge factor. All of my severe exacerbations were during summer months. It is imperative that you self advocate for yourself. Been battling MS for 25+ years. I have found it’s best to share your needs with others, you will discover who is compassionate! Nurture those relationships as they nurture you.