This Is MS Multiple Sclerosis Community: Knowledge & Support

We went to N. Wisconsin for a week, the 14-21st. I can't tolerate heat at all anymore, specifically any type of activity that increases my body temperature.

We went to a flea market, a huge one, a family tradition, just me and my two sons age 24 & 26. After strolling around for about 45 minutes in the sun, I started to feel heat symptoms coming on as the heat rose into the 70's for the day. Basically, I feel weak, dizzy, lightheaded, and I need to lay down in the shade and cool off. There was no place to lay down.

I had my new disabled tag but there hadn't been any spots left, and I'd left my cane in the car. I was so sick by the time we made it to the shelter, and my youngest son was really scared. He particularly, really hates to see his loved ones sick. It took me about a half hour to cool off suffiently to make it back to the car.

I'd gone to the ladie's room, and the women looked at me drag myself in there and let me go in first. At the sink afterward I cooled myself with cold water for about 10 minutes. I slowed down traffic in there considerably. lol

Then my son and I sat under the shelter about 20 minutes and my other son pulled the car up as far as he could to pick us up.

I felt sorry for myself and told my son I hate not being able to be outside, and he said he understood that. He loves the outdoors too. I told him I think I need a wheelchair for times like this, and that seemed to distress us both a bit.

I was always "super mom" when the boys were growing up. There was nothing I couldn't do. I was strong, healthy and athletic, I often outpaced my own family.

Anyway, thanks for indulging my whine.... It was still a nice vacation because we were in a shaded campground in the Northwoods.

I hope and pray my sons never have to deal with this stupid disease.

_________________
Take care, Ewizabeth Previously Avonex, Rebif & Copaxone RRMS ~Tysabri, 31 infusions, ended 9/09. Starting Copaxone 12/09, waiting for Cladribine to be approved in 2010.

Hi Ewizabeth,
My reaction to heat is exactly the same as yours, (although not any more because " luckily" I rarely get to go outside these days), but it must have been very painful for you to have your sons see you like that – I think many of us struggle hard to hide our symptoms from those we love: partly to protect them, and partly to try and kid ourselves that we are OK really. Many symptoms are invisible to a lot of people anyway, at least at first, and we often try to keep it that way. This is a bit of a paradoxical reaction, because sometimes we find ourselves complaining that no one understands because they can't see how hard we are working to keep the appearance of normality up.
Don't forget: your sons ARE having to deal with MS; they are facing just as many emotional struggles, upsets and fears as you are, but from a different perspective, and you are all having to face a gradual but enormous shift in the dynamic of your relationship – a frightening but potentially hugely rewarding one.

Practically speaking: have you ever thought of trying those cooling vests? I've never used one myself, but the principle sounds good: they work by circulating cool water around pipes sewn into a waistcoat; I think it's cooled by one of those freezer blocks you put in cool bags.

I know the idea of a wheelchair is a hugely daunting one, and feels as if you're finally admitting defeat, but maybe a small lightweight folding one, just for use at big sales like this, might mean you can carry on enjoying them. That will also mean another big adjustment for your sons to make, because both you and they will feel very self conscious at first.

I'm so glad you were still able to enjoy a good holiday, and I wish you many more (cool) ones!!

_________________
Dom

Dear E,
Cooling vest are great. Ive been using them for the last 5 summers and they realy help. The can keep your core temp down for up to 4 hours dependant on the outdoors tempreture. I keep mine in the freezer all summer long so its icy cold.
Also there 's nothing wrong with getting a wheelchair for those hot shopping days. Let your sons helpout by pushing you around. As twistwhelix correctly pointed out, this is part of their process as much as it is part of yours.
Hope all is well and wishing you the best.

Hi Dom,

Thanks for your reply. You're right, I am trying to protect them from witnessing all that the MS does for me. My oldest son worked with me for two years, so he saw it on a daily basis, and it doesn't affect him as much now, but my youngest son was really impacted that day. I guess seeing my "baby" upset about what is happening to his mother really got to me.

I have a cooling vest, and I should try to use it more. It doesn't do me any good to sit in the house and avoid life during the warm months.

I think the folding wheelchair is a good idea also, for outings and airports and any place where I might get overheated or overtired. I guess my sons and I will deal with these things and get through it. I suppose I just needed to vent about it. I really didn't expect to get to this point so soon. I thought I could fight it off or something (tough person that I am, after all.)

You helped a lot, thanks so much for your thoughtful reply.

_________________
Take care, Ewizabeth Previously Avonex, Rebif & Copaxone RRMS ~Tysabri, 31 infusions, ended 9/09. Starting Copaxone 12/09, waiting for Cladribine to be approved in 2010.

Thanks HM,

You make a good point. I have the vest, and it's sitting in a box upstairs. I actually got it about three summers ago. I need to use it, and I'm going to start today and see how it works. I'd love to go out and weed the flowers and fill the birdfeeder.

I was picturing them pushing me around, and thinking what kind of tires I'd want on a chair, etc... I remember when my dear old Dad (whom I take after) was failing in health, in his early 90s. He needed a cane, and never wanted to take it out because he didn't want to appear frail or weak. I kept reminding him to take it but he was very stubborn.

He wouldn't use it until one day when we were out and he got lightheaded and fell backward, hitting his head hard on the cement. A trip to ER and weekend in the hospital changed his mind. I don't want to be so stubborn. It was the same with his walker. He hated to use it, but he was big and I couldn't catch him if he fell. I do not want to cause my family those kinds of worries.

I need to be practical and get over the emotional aspects of it all.

Thank you, you gave me a lot to think about!

_________________
Take care, Ewizabeth Previously Avonex, Rebif & Copaxone RRMS ~Tysabri, 31 infusions, ended 9/09. Starting Copaxone 12/09, waiting for Cladribine to be approved in 2010.

The heat just sucks in exactly that way for me also. If I'm just sitting around in it I can get lethargic, but like you, when I include exertion in there it's bad. We went camping this weekend and had great weather and I was pretty good Fri. and Sat.. Then the sun came out Sun. morning as I'm having to tear down camp. I have a pop up style camper and some effort is required. Well my legs got weak and I was miserable and my daughter was following me around to make sure I didn't fall.

Once back in the A/C and a half hour nap later, I was "back to normal". I hate that as well since our family is very active also. I'm really not offerring any help here, but I'm with you in spirit all the way. I know EXACTLY where you are coming from.

Thanks Loobie,

Thing is, I don't go "back to normal" anymore. It zaps me at least for the day when that happens. Gosh, we used to have a pop up camper. I just wouldn't be able to do that anymore. We rent a camper-trailer at the campground we go to, and it has all the amenities so pretty comfy though small. Although, we tried the A/C this year and it kept tripping the breakers...

Well, I tried the cooling vest today. I was able to stay out for 45 minutes in 85 degrees. I was walking like "Hunchback of Notre Dame", but I was out. Do you have a cooling vest? It really worked pretty good, but it was heavy. At least I didn't get lightheaded and sick.

_________________
Take care, Ewizabeth Previously Avonex, Rebif & Copaxone RRMS ~Tysabri, 31 infusions, ended 9/09. Starting Copaxone 12/09, waiting for Cladribine to be approved in 2010.

I do not have a cooling vest, but have often wondered about them. I may see if my Dr. has any inside tracks on how to get one cheap when I'm there in a few weeks to get EDSS'd again.