Wow! I think summer is going to kill me!
 

It has been low to mid 90's in South Texas this past week....and weakness wise, I feel the worse I have ever felt. My arms were like noodles and it felt like work to walk around. It felt like I wasn't even taking Mestinon and Pred. :o

How does everyone try to stay cool during the summer? :cool:

And to think it is just going to get worse! :eek:

I certainly don't know how you can live in TX. I have some tips but I'm sure these guys have more.

Get groceries at night when it's somewhat cooler and the sun has gone down a bit. Or first thing in the morning. Make sure you have plenty of water with you because staying hydrated keeps your body cooler. I used to always have water and ice packs with me in the summer. I can get so bad that I need to cool down my body quickly, either by blasting the air or cool packs or both.

I simply don't go out when it's hot anymore. It tanks my MG so quickly. I'm lucky that we have a grocery delivery company here so I use that when it's either too hot or cold.

Be careful, whatever you do. You can get weaker so slowly that you might not even notice it. I hope you find ways to cope.

Annie

The temperatures are similar here, in the 90s recently. Here is a list of what I do to stay cool.
-always wear thin 100% cotton shirts and loose clothing.

-wide brim hat when in the sun for maximum shade.

-spray bottle with me to spray on clothes and skin for cooling effect (even if the water gets hot in the spray bottle it feels cool on your skin due to evaporation - it is rarely humid here - this only works in dry air).

-drink lots of water BEFORE going out in the heat.

-keep temperatures in house/car as warm as can be tolerated to reduce shock when going outside.

-When I need to be outside during the day, I start early so I get used to the heat slowly as the temperature rises.

-Never go out into the heat in the afternoon if I have been inside all morning, too much of a shock.

-Don't drink water quickly when out in the heat (to be specific, don't gulp down an entire bottle of water at once). Instead sip water or other drink often when out in the heat. Drinking lots of water at once is shocking to the body if you are hot.


My MG seems to like the heat as long as I don't get dehydrated or shock myself with fast temperature changes.

I have more trouble going into over-air conditioned buildings than I do the hot outdoors. I get dizzy from the cold buildings. I bring a warm coat with me (you can laugh now) when the temperatures get hot this time of year, to wear when I go shopping. I have severe reactions from the shock of cold temperatures - two times I have lost my vision, everything went gray and then black and I almost fainted before I made my way out of the buildings with help. I haven't figured out how to deal with this other than wearing a coat indoors in the summer.

I hope any of this helps. If you have other ideas, let me know. Be careful.

I live in SC and it has been pretty warm until yesterday and it was in the 70's. Felt great. I feel like I can't make it up the stairs and supposedly "only have ocular mg". My legs feel like elephant legs - like they are very heavy and weak. The dr. says that is because of the pred I have been on for over a year. I wonder. I pant, wheeze, have shortness of breathe, feel like I want to conquer the world - but can't. It is very discouraging. I feel like I don't want to talk to anyone and just want to stay at home in my comfortable corner and read a book or sit on the porch and look at the beautiful trees, sky and flowers - have a glass of tea and keep reading. sounds like depression and that scares me.

I don't go anywhere when it's hot. Nothing makes my MG worse than the heat. A few years ago this August, we had record breaking temperatures and our air conditioner went out for those three days. I felt weak and sick, but was coping. The third day was a Friday and VERY suddenly I felt like my life was leaving my body. A feeling I never want to experience again. The next thing I knew, it was Sunday morning and I was in the ICU. I had gone into a crises, my husband called an ambulance and I have no recollection of what happened after that...which is just as well. So, my point is, please be very careful when in the heat and as soon as you feel uncomfortable or start to feel weak go to where it's cool...don't wait.

HI! I'm in NC and wwe have record highs already. By far the heat is the worst trigger for my MG. My neuro plainly and simply told me to just stay home. I keep my house too chilly for most folks but it suits me fine. I learned first hand the first summer after my diagnosis while at a SC beach--heat is my enemy. I increase my mestinon by one dose if I know I absolutely have to be outdoors (with my doc's blessing, of course). My son's birthday is in July and my daughters in in September, so as much as I would like to be a professional hermit during the summer months, I cannot. I am blessed in that I am on disability and do not have to brave the elements daily, so I am most thankful for that. My advice is just stay in as much as possible and EDUCATE your friends and family so that they understand what health risks you are facing. Most people have never hears of MG, much less understand it. They may make assumptions that you are being unsociable ar are just being lazy. I ran into that A LOT!!! But the ones who matter most to me finally get it, and I have their full suppoprt. Best of luck to you!!