Ideas for comfort when leaving home

Hi everyone. First, I hope today brings you much relief and happiness. I hope tomorrow you find your answers and help you much need.

I’ve been learning day to day how to make things easier as my EM is really bad right now. I can’t even go into the bathroom from the bedroom without things spiraling out of control. I can’t sit outside for a minute. I am a prison in my home and more so in one room. Go shopping? Great ac in car helps. But trying to get from the car to the store if not up front parking very hard. I wonder if they would give a temp handicap parking card for your car during the hot summer months.

I learned never leave the house without cool packs. The ac in my husbands truck died while we were away. Never again. Now I found a fashionable little ice bag that looks like a lunch bag but it freezes. So I freeze that put in three cool gel packs and in my car I have a cooler. That goes in there. Always. Never leave without it. Just like a diabetic doesn’t leave without their meds.

I picked up from Home Depot what’s called Ryobi portable fan battery operated that you charge. It is the best fan for this purpose as I have bought others. It has low and high speed and it the speeds work very well. I have two batteries. They each run on low about 3 1/2 hours and on high about 4 - 4 1/2 hours. So with two batteries it can bring me through the night if the power goes out. But what I use this for is outside. If I can find a day that it’s not that bad I can sit in the shade and put that fan on. It works.

I have no outside time like you all I’m sure. So this allows for some outside time. Or if you are going to a cookout or something and you don’t want to ask someone for a fan, etc. you have yours.

I have a nice back pack I bought. I put the fan and two batteries and charger and can fit much more if needed. That goes with me when I think I may need to use it.

My next thing I am working on is making a hand help cool pack. At night my hands burn. I curl my hands when I sleep. So I feel if I had a little ball that could freeze that would be perfect to hold in your hands at night while trying to sleep rather than using a big cool pack.

I found online you can use rice and freeze that. I am going to experiment and if I find something that is useful, I will put it on here to maybe help someone else.

Wishing you all well.

I’m seriously thinking about designing hand mitts with cool pack compartments. If I make something that seems to work I can let you know if you’d like. I already have cool pack sleeves (just a thin breathable fabric) because I’ve freeze burned my skin with the concentration of cold before.

Hi there. Thank you for your response. Do you happen to have a picture of the sleeve? I had a thought. You know those little balls that the kids play with that squeeze and go in water? I am going to buy one and see if I can remove it’s insides and then put in rice sow it back up and freeze it. I will be trying different things the next two weeks and will report back here. I did see some cooling gloves on line. It wraps around your wrist and thumb and arm as if you have a sprain or break and there are cool packs in it. But it seems to be to constricting. If we all work together, maybe we can come up with something easy homemade and inexpensive and natural. Hope you have a pain free day !

I have done a ton research on staying cool because my daughter (age 6) has EM and we live outside Houston. She is a very active little girl playing soccer and wanting to go to Girl Scout camp! She actually went twice this summer. Her symptoms are not as severe as yours but she found great relief (sleeping at night in a tent in Texas!) from a dog kennel cooling mat! I bought her the largest one they had and placed it on her bed under her fitted sheet. It fits most of her core so it works. Maybe this is an option for you for some outside time. You could place it in a chair and sit or lean back on it…

Another option are those cooling towels they sell in the sporting good section. I think frog is one brand. We have a few - kept one large one and then cut one in fours to be able to place on specific body parts.

I hope this helps!

I’m making some bags & fillIng them with corn kernels. My husband went to the feed store for animals & got me 10 lbs for less than $8. What I discovered is you put them in the freezer & they stay colder longer than rice filled bags. I’m also making some type of slippers filled with corn kernels. When I get them finished I will send a picture of them. I’m making about 3 pair so I can put them in the freezer & rotate them. My skin has really been ruined from the fan & I’m trying to figure out how to get away from it & the corn kernel bags are what I’ve come up with for now. My granddaughter gave me a bag of them while I was visiting last month. She works in a health food store & someone makes them & the store sells them. Of course, most people are heating them up in the microwave to keep themselves warm but they can be frozen too & they stay cold for 2 to 3 hours if you have enough in the bags. I hope it helps!

Oh, & about the handicapped parking…you can get the form from the DMV & take it to your doctor to sign. Then take it back to DMV & then you decide if you want the one that hangs in your window or a license plate that shows the handicap sign. There is no temporary handicap parking that you can get…at least not in my state. If you get the hanging one then you can put it in your window whenever you want to. I have mine on a license plate. But I am also in a wheelchair now when I go out. Everyone looks at my feet because they look bad. I even get people who stop to talk about it with me & ask me what the problem is. It took me a long time before I would resort to it because I don’t like the thought of being in one. But, one day my husband said, “You’re going to have to suck it up if you ever want to get out of the house & have a life”! That’s when I did it because I knew he was right. Thank you for sharing what you pack up, etc. when you go somewhere. I’m going to do some of those things!

I also use a black umbrella. It keeps me cooler and, reflects the sun and heat away

thank you ! I actually looked into this and see some that are adults size. I’m going to check that out and the cooling towels I have heard of. I believe you have to keep them wet right to cool? When she uses the towels doesn’t her skin become shriveled up? Or am I misunderstanding how the towel works. I saw some in the store and they all said must keep wet. Thank you for your response and I wish your daughter the best of health and hopes that she rids of this disease !

I just made over the weekend little socks that I got from our dollar store. I filled with rice. They are kids socks but fit my hand when filled with rice and it stretched out and fits nicely in hand. However, at night I grab a few and they work but they are short lived. They are nice to not freeze your skin but not long lasting at all. Now I’ll experiment with what you suggested and see if it keeps it better and longer cool. It was easy. Just buy a sock with a thin material, kids size, nice material feeling, and fill up with rice and sow the small part closed. So easy to do with corn. I’ll try it and let you know. Thank you and I hope yours works out with success too ! Maybe between all of us we can come up with something simple that people can just make on their own. Wishing you a pain free day.

I am sorry to hear that you are in a wheelchair but I do agree with hubby, in order for us to have somewhat of a life, we have to adapt and keep trucking on. I will more than likely get one next summer. I’m hoping our 90’s degree humity weather breaks soon. After all, I am in New England ! Yes def try the fan if you like to know the brand and where I got it private message or can I write it here? I know some sites have rules where you can’t put the product etc. that you use on the forum. It works well. I have two battery packs. It can plug in two but it is awesome and the air flow is best I’ve seen with battery fans.

That is interesting. I would have thought the black would attract the heat to you. But yes using an umbrella is a great idea if you have to be out walking in the sun. Thanks I will check this out too. Hope today brings you a pain free day !

The cooling towels work by evaporation. Yes, the cooling towels have to be wet to work. If you place them on an item of clothing, it will be wet. The towels are large so I have a large one and one I have cut into four. The smaller ones are good to place on specific areas. I have never noticed her skin or mine to be wrinkled after using. They are not ice cold but are surprising cool and last as long as they are wet making them practical for taking with you.

If you start looking around you will notice more cooling products. I was at kohls the other day and they claim to have bras that are made from cooling material! No idea how good they are! Then I saw an ad for a Payless sneaker called breeze that is supposed to cooler.

My daughter has a chillow - it is a cooling pillow. She practically sleeps on it!

Type in Google cooling products. There are a lot of options! There is a cooling hat that fits snug under hard hats! There are cooling liners for strollers, cooling vest, cooling head bands, cooling bucket hats, cooling insoles for your shoes…there are even “fashionable” cooling scarves and vests!

I hope this helps you!

I have a 2 part system that helps me be out for many hours, sometimes even all day, and helps me with road trips as well!

First of all, I am very wary of ice, because some research and the doctors who know anything about EM have warned that it can really mess up a person with EM. Has that warning changed? My foot specialist told me that water from the fridge was ok, however. But it caused a different sort of pain, almost like it was too cold for me even though the coolness was also wonderful. Then I discovered that if I put a thick, super fluffy chenille sock over a waterbottle that is frozen, that this dampens the cold so that it is less cold than even the refrigerated water. It also works to keep the water frozen for hours and hours. I bring 2-6 with me when I leave the house. Depending on how long I will be gone. So far, even in the desert heat, they last all day. Towards the end of their cooling life, when the ice is melted, I take the sock off.

I bought several Ozark trail foam seat cushions (the ones that don’t have a fabric covering them - they come in blue, green, red, and orange. They are really thick and squishy, almost like gel, only with a little more support. I have one that I have cut in half (not exactly summetrically, in order to preserve the handle) and it fits in my bag. I have a bungie that attaches them to one another, for carrying. Then, as soon as I get in a car or to my seat wherever I am going, I put the two halves down under my feet. I slide my shoes off. This saves me from both heat and pressure. Then I put down 1 or 2 frozen, sock covered bottles, and put them so they are kind of corralled by the foam. Then I can touch my feet to them when burning, and then rest them on the foam when less awful. This really helps. I was able to ride for four hours in the car, each way, the other day with hardly any discomfort.

The best water bottles are medium thickness, (nestle pure life) but still have some give, as the cheapest ones wear out and leak much faster, and I am very sensitive to pressure and hard things against my feet. These last for quite a while when used this way. I keep extras in the freezer all the time so I can grab them on my way out the door.

If I expect I will be walking or standing for more than a tiny amoont of time (funerals, etc) I also keep an extra pair of my amazing shoes in my purse. So when the heat builds up, I switch into the other pair. They aren’t made anymore, which is a crime. They have helped me more than almost anything else in my life. They were easy spirit heel risers, antigravity collection. The ones before they started putting in cloth soles that are hard and awful. The ones where the foot is right against the wonderful squishy, thick soles. If you see them for sale anywhere, they are worth nearly any price and last for years. We all ought to sign a petition to have them brought back. Everyone with bad feet who sees them asks where they can get them, not just EM.

sorry my reply took a while, I haven’t logged on here for a bit. This is the sleeve I made for my packs. It’s not an insulating fabric so it delivers an intense cold without me having to worry about hurting my skin. Super easy to make!

Thank you for all your ideas and responses!

I have tried a few things. I did buy a dog mat and I bought two different ones one was for $60 and one for $20. The on for $20 is a winner. While I can’t sleep on it as I’m too uncomfortable and it’s too cold for the rest of my body, no body fat, I do however fold into two and leave at the end of my bed where my feet are. It works ! When the feet are flaring which is every night, I put my feet on it sometime just slip one foot under it and the other on top of it. The winner for me is Polar Pooch and I bought the large. I do believe I will be using this in the summer as well. I also put it on my recliner to watch tv, just put your feet on it. It says it works by pressure of your weight. It stays cool for me no matter what and I don’t put pressure on it. I also use the same thing by my pillow. I fold it into fours to make smaller and I put my hand on one side if needed.

I did make the socks filled with rice. They do work but they are not long lived. The corn filled lasts longer.

I sleep with three ice packs at night not on me but near me. I have a body pillow that I must sleep with between my knees and push against my shoulder. I am a side sleeper which makes keeping the hands cool hard. But I put the three ice packs about 45 minutes before bed under this long pillow. Then when I am ready to try to sleep, I put the pillow on my body parts and it’s cold but not freezing. One of the ice packs I put, while on my side and my elbows bent both hands not far apart, near my hands under the blanket. This area is the area covered with the blanket and since I sleep on my side and knees bent in a fetal position, the ice is placed near my stomach area but not touching me. My hands I place near it. It works sort of like an air conditioning unit under the blanket just for that area. So if you are a side sleeper this might be something you might want to try. It helps. During the night I grab the other cool packs from the bed and they are less cold but nice for the hands if you need to hold it and it won’t destroy your nevers. Also the fan is above my head pointing on my inner body and the fan at the base of my bed pointing at my feet, on the severe nights. I also open my window and cool my room off to about 58 degrees before I go to be or to about 60. My heat is on 62 and before this aweful disease I always froze and slept with 4 blankets and heat on 68. No more !

When I leave the cooler comes with me no matter what the degree. Three cooling packs in a cooler in case I need them, break down, etc. etc. My air condition broke in my car in the summer when it was almos 90 degrees. Suffering is what happened. No more, the cooler comes no matter what the degree. Just like diabetics need to bring a cooler, well now you should too.

I keep a fan that is battery operated by where I sit. Because it is battery operated the flow of air is weaker and that works better, especially in the winter time.

I barely am able to wear sneakers and I have collapsed arches and need inserts to wear but this EM I am not able to wear now and so that is another problem all together !

I have learned to dress in layers. Always a short sleeve even if it’s 20 degrees outside. Short sleeve, zip up, they can come off.