It's the question queen AGAIN.

[cin68]

Please tell me how you deal with the heat?  I never leave the house on the weekends and it is starting to get to me.

Cabin fever is starting to kick in and I am bored out of my mind.  I can't wait to come back to work on Monday.  Now that is sad!!

Cin

[Sparkysarah]

A rather belated reply to your question about my new symptoms I mentioned. Now I know that it was a minor relapse with a major consequence. I was not allowed to go into my drug trial.

The new sx were just new pins and needles and slight numbness in right arm. Ifelt very fatigued for 3 days and then improved. Now the sx come and go just like in other places of my body.

Never mind..it seems a long time since I posted in response to your question. Weather in Enlgand is now horrible although I guess you guys would love some rain!!

Take care and hope you are doing better

Love Sarah xxx

[cin68]

Your right I shoud have started a new one.  
The thought popped into my head to ask and I just started typing before I forgot what I was going to type.

All I want is the hanging tag as well.  I will only use it if there are many available spaces.

Thank you for your reply.
Take care of yourself!!!
Cin

[essdipity]

Hey Cin. You might want to start this as a new post, since we're getting a bit off topic. Not that that is a big deal, but more people might jump in.

I have kept putting off getting a handicapped parking tag. One excuse after another. Now I have decided to ask my PCP when I see him later this month. In the past he has said that it's totally up to me, and he will sign whatever is needed. I really don't want actually license plates, just a tag if I really need it.

I live in a condo which I bought 6 years ago, when I was without symptoms and not even thinking of MS. I hated the many steps involved, from day one, but I loved everything else about the place. That was in the era when housing prices were through the roof. My unit was on the market a total of one day, and I bid $5000 more to get it. I'm not sorry now, yet I really don't want my neighbors to know about my health issues. So a removable tag seems to be the best option.

Still, I will feel guilty using it. There are times when I'm just too tired to park far away and then navigate through a big store, so I just go home. Yet I see many others worse off than I. So I do understand, and hope others will chime in too.

ess

[beema36]

I bring my core body temp down by.eating a couple.large glasses shaved ice b4 I go out to the point I am.shivering.  Then take another glass with me. Buys me some time on the heat

[cin68]

Ok my dear friends, I have another question.  Something that is weighing heavy on my mind.  As you all know just walking from your car to a store in this god awful heat is enough to put you down for about an hour.  I am considering get a handicap sticker for just the Summer months.  My problem is I feel guilty for taking a parking place from someone that may need it more than me.
I worry way too much about what people think of me.  I need to think about myself.
What do you ladies think?
What would you do?

Cin

[Sarahsmom46]

I never thought of using the Shared Solutions gel packs for anything, but thanks Jen for that great idea.  

I am sold on the idea of a cooling device like hte collar.  I thought they looked too dorky, but that's a whole lot better than being stuck in the house the whole summer.  

Where do you guys purchas them?

Julie

[cin68]

I will stick on in my bathing suit.  I may get a few looks.  Either I will have a third breast if I put it in the top of my batching suit.  If I put it in bottom of my bathing suit, there is no telling what it will look like, but I am getting a giggle out of it.

Hugs everyone!  and not the painful kind!

Cin

[jensequitur]

I had to walk to the car repair shop the other day, in 100° temps, so I took one of my Shared Solution gel packs out of the freezer, and stuffed it down my pants.  Worked great!  It was still cold a mile later, when I had arrived at the location.  I was debilitated from the heat, but not as much as if I had used nothing at all.

[cin68]

Hello my dearest friend.

I called Dr. R and they are bumping up my baclofen to three times a day.  I am already on 2mg of Klonapin, which I just took one.  I told my co-worker if I am really quiet check on me.  Either I have passed out from the klonapin or the pain from the hugs and I will require mouth to mouth from the best looking man in the building.  Knowing the evil wenches I work with they will get the ugliest, smelliest, bad breath man in the building.
MUST STAY AWAKE!!

I love you guys,  I never feel alone anymore!

Cin

[rendean]

I personally know of our local heat wave as well. Check your messages for my way to deal with the heat.

As for the Baclofen, call  DR. T's office and see about an increase in dosage or try increasing the Klonopin from Dr. R.. Either office will be more than willing to help stop the hugs.  Their offices are always accommodating unlike Dr. L's.

I'm a hermit inside my  house for now. Hubby pre-cools the car if we go anywhere and then the destinations have to have A/C.

As for the trip to the coast. Last year I went to the FL Keys and did quite well in the heat. I spent a lot of time in the water, wore a wide-brimmed hat and drank water 99% of the time. My friend had an umbrella set up for me next to the dock and I sat there with a battery operated fan if I wasn't in the water.

You should do fine with a little bit of prep work. Enjoy your get-away.

Ren

[cin68]

I think I will get a sound machine, that sounds like the ocean.  Crawl into my big tub full of cold water and close my eyes and pretend.

Sarah, I think I may have to move to the UK.  Of course my husband will not go with me.
Heat is his business, he runs a store that sells heating and air products to large companies.  Business is very good for him.

To make things worse, my ms hugs are getting worse due to the heat.  My Baclofen is not touching it.  So I sit at my desk having one right after another.
I just close my eyes and find my happy place....somewhere cool of course.

What new symptoms are you having?

Cin

[Sparkysarah]

Great question! Here in UK we normally have nothing to complain about with our summers but we have had a minor heat wave and the last 3 days I have been wiped out. I am not sure if I am having another relapse or if it is heat induced tingling/numbness but I have had some new symptoms which is generally not a good sign along with the fatigue.

So I can't give you any tips for dealing with the heat but I can at last empathise on this one. I do not know how all you folks cope with it full time..it is quite exhausting and I wonder how it affects everyone's symptoms?

Anyhow admire the sun from the window Cin, sitting in a cool bath and pretend you are on a beautiful tropical beach.

Love Sarah xxxx.

[essdipity]

I took a hint from Alex and tried wetting a baseball cap and putting it in the freezer for a bit. This did help, but it didn't last long or provide much coverage. But thanks for the idea, Alex, as it gave me a good starting point.

So now I've hunted up another hat left over from beach days. It's 100% cotton canvas, has a wide brim and a higher crown, and even has large grommet holes for ventilation. I'll try that next.

I agree, I don't want 'stuff' in the hat that doesn't wick off perspiration and just blocks airflow. I also hope this free :-) solution works. I'm optimistic because the label says 'it floats,' so maybe wetting it won't turn it into a wreck.

My neck wrap thingy does look like I've had some sort of injury, and neighbors have asked, but people will get used to it, and I don't mind looking kinda weird. I live in a condo so I have to walk my dog regardless, and the poor thing deserves some decent exercise.

I find that leaving the wrap on for 10 minutes or so after I get back in helps me to cool down, since I seem to sweat even more then, for a while. Sometimes I turn the back panel to go down the front, and that helps too.

Whatever works!

ess

[cin68]

Hey Terri,

I miss sitting at the pool with my neighbors.  What stinks is I can hear them laughing and having a blast and I feel like the boy in the bubble.
We are going to our friends house next month and they live off the coast of Georgia, everytime we go, we hang out on the boat and head over to a private island and just spend the day there.  Now I am dreading it.
This past weekend, I stood out in the sun long enough for my dog to do her business and I could feel my energy just drain.
Oh well I will stop my whining.  I just miss the sun.

Cin

[tjj3761]

Hi,

I ditto that.  I used to be quite the sun bather, but cannot take the heat or sun anymore.  I went and bought some of the instant tanning lotion, which works great.  

I too am going to look into some cooling vests etc.

A couple weeks ago on the weekend, it was a hot Saturday, we went out to eat.  All the inside tables were packed, so we ate outside.  It wasn't 10 minutes and my Uthoff's sign kicked in.  I think 30 minutes we were out of there.  

At least we all have each other to talk to........

terri

[cin68]

Thank you so much!
This past weekend sent me over the edge.  I am so sick of my house.  I try to find things to do, like clean, but that does not last long.
Yesterday I walked around with a garbage bag and started cleaning out junk drawers and closets and anything else I could find.  It was a treasure hunt as well because I found some really interesting things.
My neighbor has a pool and I was gonna go swimming and my husband went to check the temperture for me and the water was already warm like bath water.  Scrap that idea.
I need some sun, if I get any whiter I will be transparent.

Again thanks my friends,
Cin

[twopack]

I do the same things as Alex and ess.  I try to use the cooling collar beforehand if I plan on going out.  People think I've had a terrible accident if I wear it anywhere.  For me it seems more effective to pre-cool than put it on when I'm already in the heat.

I have two collar.  One has the ice block inserts and the other remains a gel even when frozen.  The gel is more comfortable and makes better skin contact.  The frozen blocks stay cold longer.

I also have a hat with the evaporative beads that you soak.  Hubby likes that and the neck bands that work the same way.  I haven't found them to work well in this years high humidity.  They just lay there, get soaked with sweat and block air from reaching my skin.  They do stay a little wet but once a hat goes on my head it is there for the day.  If it's hot out, my hair is going to drip sweat shortly anyway.  Wet or dry, I hate hat hair.

I have the same sweaty head!  My mother said I was always that way and she could never put a hat on me as a baby.  I guess the majority of my sweat glands floated to the top of my head.  LOL

Mainly, I try to go out early morning, later evening, for short spurts or just hop from one A/C place to the next.

Mary

[essdipity]

This summer has been brutal thus far for many of us, so this is a really relevant topic.

Everyone with severe heat problems should look into cooling garments.I have a neck wrap that is wide and fastens with velcro. It extends down the back between the shoulder blades. All sections contain small ice blocks, which really do the trick.

Now I'm planning to investigate hats. I want one with a good-sized floppy brim for best sun protection. From what I've read, these are immersed in water a few minutes until their inner cooling gel crystals expand, or something like that. I don't want to get my head wet in the process, so I'd best do some inquiries.

My head gives off heat like crazy. I'm one who wears sunglasses a great deal, and when I go into a store, etc., up they go to the top of my head. However, when I go to put them on again, they are all steamed up from my head heat. I haven't heard of that before but maybe it's common.

AC is so important for MSers in hot climates. Mine is costing me a great deal these days, but I saved during the winter by keeping the heat low. Hot then too.

ess

[HVAC]

I get a baseball cap wet and put it in the freezer for a few minutes.Same for a bandana around my neck. There is a Mall near me which has a mall walker program. They open before the stores are open. I do things early morning and in the evening on really hot days. I have a cooling vest as well if I am out in the heat. I have a tent carport in the back yard which reflects some heat. It is a large enough area to work on projects. Tepid shower or baths are good. I keep my a/c at 80 or 85 which is at least 15 degrees cooler than outside.

Alex