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Avatar universal

Its a bad day :(

Im having a bad day...guess it probably isnt helping that it is in the 100's temperature wise and our air conditioning is broke. This morning it was so bad I was almost incoherent and couldnt move. Husband had to pick me up and bathe me in a cold shower. I feel alittle better..obivously since im on here and talking. Im so embarressed. He had to help me with my clothes, bathe me, i couldnt do any of it. He doesnt mind. I do.

meh...im just feeling really horrible today and needed to vent. It makes me mad because yesterday i could at least walk..today i can just barely..i need a walker or cane for these kinda days..instead of hubby at my arm like my servant. i need some sort of independence and he needs some down time for himself, not having to take care of my incopasitated butt.
I dont like this.

inny
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572651 tn?1530999357
MSAA offers all sorts of programs  - the cooling garment program is just one.  They also do technology support,  and will give you assistive devices, such as a wheelchair if you need them.

be sure to check out their website - lu
Helpful - 0
Avatar universal
No problem at all, I'm glad to help. I was browsing the forums last night and found another post by Lulu about the same program so I definitely can't take all of the credit!

At any rate, hopefully this will help those of us in need without A/C :)
Helpful - 0
Avatar universal
wow thanks ken!!! Thank you Thank you Thank you!!!
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Avatar universal
I just found a great program run by the MSAA where you can get a free cooling vest!

http://www.msassociation.org/programs/cooling/
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Avatar universal
Thanks for the support! Chris thank you for your prayers!! Audrey, that really is not fun, and I say INVEST!! Even if you dont have that many hot days definitely go for it!! It is really important! I dont want ANYONE to have to experience what i went through, definitely scary!! I know itll happen but ya know..

lol maybe we should start an MS support foundation making sure people with MS around the world have AC..whether it be air conditioning units or central air or what not...im sure that would help alot of people! Just handing out units and donating money to get ACs fixed or installed.

Ouix, Thank you so much for that!!! After i read your post I read it to my husband and he and I are going to write it down exactly as it happened. Im going to need his imput alot to make sure i dont leave anything out as my mind is kinda fuzzy on the whole thing!  Well, im not 100 feeling better, but then again, our AC is still out, im still pretty weak and shaky, but im not inchoerent and i know what people are saying all that!

Thank you guys again so much!

Inny
Helpful - 0
147426 tn?1317265632
I have another thought.  This episode of yours may be an important piece in your diagnosis, similar to what happened with Julie (Sarahsmom).  You and your husband need to write this up exactly as it happened to give to your doctor.  Although other neurologic illness have sensitivity to the heat, I can't think of another that responds as severely as MS.

What you went through is similar to the "Hot Bath test" they used to run as part of the diagnosis of MS.  They would put the patient in a both bath and see if the symptoms got worse, more specifically to see if they would lose their vision.  It's called Uhthoff's Phenomenon.  It is no longer used because the effects that it causes can very occasionally become permanent.  But, sometimes, like with you, the test happens spontaneously.  This can tip an undecided neuro into the diagnosis.  Also, if at all possible your husband should go with you to the doctor to describe what happened.

In terms of writing it up, you can also print out what you have written here.

If you are not feeling 100% better by tomorrow, call and ask for an urgent visit with your neuro.

To other Limbolanders with similar problems.  Make sure your doctor knows about your episodes.

Quix
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1260255 tn?1288654564
Inny, glad to hear that you are doing better. To all of you others out there trying to deal with this heat wave, I hope that you are coping well. We haven't even hit the dog days of August yet and something tells me this weather pattern is going to last all summer long. Yuck!

I am a limbolander with a tentative diagnosis of degenerative disc disease and find myself having one of my worst days in the past year. I live in CT with no air conditioning, only a fan for sleeping at night. I woke up this morning with a very stiff neck, extremely lightheaded and dizzy (so much so I am afraid to take a shower for fear of falling over with balance issues), very weak legs and the numbness/tingling in my right hand has spread and is severe today. Right foot is also numb/tingling, which is not usual for me.These past two weeks with the heat have been lots of fun with bowel functions and repeat visits to the bathroom; can I just please finish so that I can get to work on time?

I go through that debate every year about getting air conditioning and always opt out, saying it's only a handful of days each summer that are truly hot. Lived in New Orleans and the Caribbean, so it thought I knew how to deal with the heat. Not so this year.
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Avatar universal
Hi Inny,Im Farely new here but I just wanted to say hi an Im happy to hear your doing better and I can relate I get the same way in this heat.Its nice that you have a special person in your life that is smart enough to no what the heat does to people with ms an cares for you when you can't,That says a lot,Your in my prayers,Best wishes:)Chris:>j
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Avatar universal
Thanks red for the support! Like i said I knew heat was not good for MSers but never knew it was dangerous! Doesnt it always seem like work like that ...you wait and wait and when you break down and are ready to leave it all gets better..lol like the electricity or the air conditioning lol.

Im glad your ok after that storm though! That must have been rough! It seems like your sister is really helpful and supportive..thats great! And yea, my husband is my angel. He really is helpful with everything i need. I actually told him yesterday for the first time that I was incontientent and I was embarressed,

i didnt want to tell him that but getting my clothes off i guess he saw my undergarments and i must have had a slight accident when i was incoherent. He said he already knew and didnt care. I love him so much.

Thanks again for your support! It means alot to me!

Inny
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1312898 tn?1314568133
Hi Inny!!  I'm so sorry you had such a bad day!  Yes, the heat is a very dangerous thing.  We are having such hot and humid weather in the east.  You have a wonderful husband that really loves you and who understands that the heat does awful things.

We had a bad storm come through here in Michigan and lost our electricity for almost 2 days.  I was a blubbering idiot.  I then realized the rationale of the cooling kit I have heard about.  My sister went out and got battery operated fans etc.  But we were going to a motel when the electricity came back on.

Be really careful in this heat.  Don't go out in it.  Allow your husband to take care of you!! It's obvious that he really loves you   Red
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Avatar universal
Thanks for the support! Its another hot day but i got to sleep in today and with the air conditioning in my room so Im not so bad off today..yesterday I was up at 7 and in the heat for 2 hours before i became a blubbering mess. I can feel it slowly coming now but we are going to my moms today who has air..so thatll make me feel better! I think after i write this im going to go stalk off and take another cold shower to keep from yesterday happening.

Stacey, I am so sorry that had to happen to you and with your daughter there! It must have been scary for you and her. I worry about situations like that thank God we live with my Sister in law and her fiance and she stays home so I always have someone to fall back on in case something like that happens.

Kenny, oh my goodness! Well, you are alot braver than I am ill tell you that! Im glad your wife talked you outta that part just to turn around and get stuck in a bathroom! There is no comparison here, because we are all different and what happened to you was the same as what happened to me! Your situation was just as crazy as mine! Thank you for the smiles kenny!

Sarah, maybe i should move to england!! LOL. Yes being in limboland is extremely difficult but I hope to have answers here soon when i go see the nuerologist in august. Its been 3 years battling these symptoms and yet it seems I still cannot figure out what makes me sicker and what makes me better!!

Thanks again for all of the support. I think im going to have a sit down conversation with my air conditioning today and beg him to feel better and tell him he is ruining me lol. Lets hope i can get this fixed sooner than later!
Helpful - 0
1253197 tn?1331209110
I cannot imagine what it is like in that kind of heat without A/C. We are luckier here in England that the weather does not reach those kind of temperatures very often. I have never been good in the heat and feel so sorry for you.

You are blessed with a wonderful husband and the fact that he is able to help without being asked and is doing his research as to what else he can do is wonderful. It must be so hard wihtout a dx and being in limboland when your body is giving you very clear messages that something is not right. Hope it gets cooler soon and that the A/C is mended before too long.

Love and hugs

Sarah xx
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Avatar universal
Hi Inny,

I'm so glad that you're feeling better!

This reminds me of earlier today. The wife and I had gone to Wal-Mart and I decided that it would be a good idea to test and see what heat does to me. It was upward of 90 degrees today and I was feeling brave. Luckily my loving Wife talked me out of it.

When we got home, she took a shower. I walked in to use the restroom right after she was finished. I was in the restroom for less than 2 minutes when I felt like I was slowly turning into cement. I am 6'2" tall and I was trying to take the biggest steps that I possibly can to get out of the hot and humid bathroom.

It took me 3 steps to go about 8 feet... well 6 steps really, my right foot was dragging to the point where my left foot was and then I would step with the left and drag the right again. I can't imagine how I would've been if I had decided to step in the shower with her! It only took about 5 minutes for me to recover after leaving the bathroom and stepping into the A/C.

In comparison, with my current condition, it would probably have taken me 2 steps with my right foot stepping nearly normally. If I had my balance that day, I may be able to do it in 1 :)

I know this doesn't quite compare to your story much, but I thought I would share. I'm still laughing at myself and hope it will make others laugh as well :)

Kenny
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1391915 tn?1280633407
I'm glad you are feeling a little better. I was actually diagnosed last month. And we just got our ac fixed, makes my symptoms worst when its hot, my daughter and I would go to my mother in-law house during the peak of hot weather. There was a point when I was taking a bath with my daughter and I wasn't able to stand up, my entire left side went numb and was very weak. That's when I knew I had to go to hospital. I had to spend a little over an hour in the tub until my husband came home, my daughter was so upset, she couldn't figure out why mommy was crying, and was so upset! And just sitting there. Talk about losing pride, etc. And I learned that my symptoms gotten worse in the heat. But its good to hear you are doing ok
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Avatar universal
Erin,

Thanks for the support! Im sorry that happened to you and at the beach no less!!! I definitely do not blame you for wanting to sleep all day. I wanted to do that today but i did get two naps outta it, so i guess thats decent enough.

Yes, I completely agree soaking will be just fine! We also have a hose so if hubby doesnt mind running after the baby outside tommrow, Im gonna take him outside and spray him and i down, he loves playing in water!

Lol yes i hope the temperature drops soon. I cant believe im saying this..but i wonder if i should start hoping for winter!!!!

Oh gezz!! 4 tornadoes? Id have been freaking out..lol i live in Pennsyltucky (pennsylvannia if you havent heard that joke) and all we get are snow storms...im so glad your ok!!
Helpful - 0
649926 tn?1297657780
Inny,

   I am sorry that you had such a bad day. I had one like that at the beach a few years ago and my family had to drag/carry me up the beach to the hotel and then like you hubby had to undress me and get me in a cold shower.

  They wanted to take me to the hospital because they were scared that I would die. I was just angry, embarrassed and wanted sleep in the hotel air. I will never forget it. I bet my sweet family stayed up watching me sleep but I was out.

If it's going to be several more weeks make sure that you cool yourself off frequently. A fast way is to wash your hair in the sink with cold water and leave it wet. That is one that I can still do for myself so I do it often - if it doesn't need washing I just soak it.

Take care - I hope the temp drops soon.

Hugs,
Erin :)

P.S. Our power was out for 7 hours today as we had 4 tornadoes cruise through the area so it is hotter then heck in the house and I couldn't even watch the tv!
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Avatar universal
Thank you all for the support!!! It means so much! We ended up going to my friends moms house for the day and it really helped. But we had to come back so the baby could go to bed. The AC is going to need a professional unfortunately and we will have to wait another couple of weeks...we did get an old AC unit and put it in our room so I will be hiding in there for awhile I think.  

My husband is wonderful, and so supportive. I didnt even ask him to take me to get a bathe. I was just laying there on the couch and i didnt even understand what he was saying i was that incoherent. He just picked up, sat me in the tub and ran cold water on me. I never realized he would think so clearly like that. I didnt even know he was that educated on MS..he said he has been doing his research and homework and prepping himself for what i need. I am very blessed..many would have just let me lay there unable to move. He didnt.

Thats awesome that AC is something that could be helped fixed with the gov. help. We are living in a house right now that is owned. Unfortunately I do not have a definitive diagnosis so I dont think they would help me...but it could be worth a shot!

Thanks for the cooling garment suggestion! I will look that up! Yes ill be taking cold showers from now on (at least for now) the last one seemed to really help. We have a ton of fans-one is on me right now lol.

Thank you so much for all of your support! I went from incoherent, to choerent, to embarressed, to realizing I am blessed and that I really should find a way to conquer this air conditioning problem. I knew that heat was a problem for MSers, I never knew it was dangerous.

Thanks, Inny


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147426 tn?1317265632
Hi, Inny, we haven't spoken before, but I know that you are are relatively new here.  The heat, even mild heat is really hard on us, and temps like you are having reduce us to whimpering pools of mindless jelly.  A/C is such a known medical necessity for MS that you may well be able to get assistance in repairing it from the utility company, state agencies, or even your local chapter of the MS Society.  Then there are the tax credits, too.

But, every one who spoke is correct.  The heat like you are suffering from is not just a nuisance, but it also is dangerous for you.  Look into staying with soeone who has A/C, camping out at the mall or getting a motel room.

Also you need some cooling garments that help cool you as you wear them.  These are available free from some sites online, and there are instructions for making them also online.  The local MS Society can point you towards those also.

Wet hair in front of a fan is a quick way to get rid of heat.

Take care.  I hate to see what you are going through.  Give a hug to you hubby from Mamma Quix.

Quix
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572651 tn?1530999357
A/C is considered a medical necessity for MS patients.  I can't tell if you own your home or if you are renting -

if you rent, let the landlord know immediately that the A/C must be fixed because of your health.

If you own, be sure to look into the tax credits you can get for repairing/ replacing your A/C. At least part of it might be something you can take off your taxes next year, so be sure to save the rx.  

Helpful - 0
572651 tn?1530999357
Yes, it was certainly a scorcher today and I can feel the heat fatigue all over my body, even though I was mainly inside in A/C.  I don't know that I would be able to walk if I had   to be in this without A/C.  

Your husband sounds wonderful - he wouldn't be tending to you like this if he really didn't want to be with you.

Sunday is going to be a bit cooler, but without the A/C you will still be cooking.  Please review some of the place you could go to escape the heat.  Your body needs the break.

chill, Lulu

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620048 tn?1358018235
I couldn't do that..i have always said that if the power goes off, I would leave and get a motel or go to the coast...i wouldn't have to go far to find cooler weather.

If you are able to get out and go to a movie, mall..family.. friends...that would help.

How long will it be broken?

cool hugs to you..

meg
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559187 tn?1330782856
This heat absolutely horrible especially being without A/C. Is there anywhere you can go stay until the a/c is fixed or at least until it cools down?  If we lived closer, my door would be open for you to come hang out until your A/C gets fixed.  I mean that.

Hugs and hopeful that you guys will get your A/C fixed soon.

Julie
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Avatar universal
I am sorry to hear that you are suffering in the heat. Glad to hear that you have a wonderful husband to help you when you need it. I too have days where I feel like my legs don't work. The heat is the worst. I just moved away from Tucson Az...aweful!

Perhaps if you feel a bit better you can go to a movie? Its very air conditioned..almost too much..and it would pass time till it cooled down?
This disease is maddening. I know.

Just know that all of us understand first hand what you are feeling. Not all of our
symptoms are the same, but the anger and frustration are.

Take care or yourself.

Kristi

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Avatar universal
Hi Inny,

So sorry you are having such a difficult time.  I've been complaining of the heat but it's only 87 here!  You are not alone, as I am sure you already know.

Not sure what I can offer, but to say I think I have an incling of what you are experiencing.  My wife has had to hekp me with clothing and bathe, among many other things, from time to time.  The sense of the loss of independence is so frustrating (to say the least)  In the summer months, I used to shower three times per dayI

Regardless, I still find it somewhat embarassing.  However, I thank God I have her.  I'm not sure how the heck I would function w/o her, or someone.   I guess things could be worse.  At least she dosen't have to hold it when I pee or wipe by butt; at least not yet!!!  LOL  I'm sure when and if that day comes, I'll be pissed off to no end (and I am quite certain, she will be more-so than me) LOL

Hang in there and I wish you the best.

Frank
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