Heat

Here is my conundrum for the day. I crave warmth, not just warmth, heat. It is midsummer, and I want more heat. Go figure. I hate air conditioning. Hate it. I ask a cab driver to turn it off and he looks at me like I’ve just been released from some place you do not want to be. This is not a small issue of personal comfort. This is a matter of survival. Cold air on my skin is something close to painful. When it is blowing on me, forget it.
Meredith likes air conditioning. Most people do. I don’t hold that against her. But I walk into a room where she is sitting and, man, I want to throw open the windows. Aren’t you freezing, I demand. “No.” How can you stand it? “Get a life.” Something is amiss here.
I have taken to questioning anyone unfortunate enough to pass this way. Do you want me to turn the air conditioning down? I offer. Everyone is quick to decline my generous offer. I am grudgingly close to admitting that I may not be normal, and I am the problem. But it is counterintuitive to be sitting and shaking like I am mixing martinis in my pocket and coming to grips with the probability that something is wrong with me.
I blame the MS. Of course I blame the MS for everything. This one has to be true. What else could it be?

58 Responses to Heat

  1. Grandma July 20, 2014 at 4:47 pm #

    I have the exact same problem. We lived in Olympia Wa. for years and I loved it but we had to move to Southern California because the cold and dampness in Washington made it unbearable! It’s a terrible tradeoff though because my kids and grandkids are still in Washington(insert sad face I don’t know how to do that with the computer yet). Moving back and buying a bunch of cute sweaters and boots is an option I’m considering.I’m the only grandma that looks forward to hot flashes. You won’t get those

    Grandma

    • Richard M. Cohen July 20, 2014 at 7:57 pm #

      So fR,

      R.

    • Richard M. Cohen July 21, 2014 at 7:49 am #

      Yet.

      R.

  2. Joan July 20, 2014 at 4:50 pm #

    This is all too familiar. I used to love cold, wool socks, hiking boots cold. Now any temp extreme, hot or cold is just downright uncomfortable. Yes, it’s the MS. That’s my experience and amateur diagnosis anyway. Don’t have an MD, but do have MS. And Florida summers are just unbearable. If we get a cold snap in December, I stiffen up. NO FAIR!

    • Linda Lazarus July 20, 2014 at 7:22 pm #

      Isn’t it easier for you to dress in many layers and snuggle under a blanket than for your friends to solve the problem they have if you shut down the air conditioning? Their only solution is to go naked! You can wear a hat and more.

      • Richard M. Cohen July 20, 2014 at 8:00 pm #

        THAT IS WHAT I DO.

        R.

      • JoanBee July 21, 2014 at 12:34 pm #

        I have the same problem that Richard has, and no, it isn’t easier. I work in an office, and I can’t wear a hat and gloves at my desk. Well, I guess that I technically could, but MS already draws unwanted attention to me. I have no wish to invite further scrutiny.

        And yes to blowing air causing pain, especially on lower extremities.

    • Richard M. Cohen July 20, 2014 at 7:58 pm #

      RIGHT.

      R.

    • Richard M. Cohen July 21, 2014 at 7:50 am #

      Agreed.

      R.

    • Sarah July 22, 2014 at 2:00 pm #

      Extreme temps don’t agree with me either. Here in south La., the heat is also unbearable. It’s my krypronite, and Superman is no where to be found.

  3. Beth July 20, 2014 at 10:00 pm #

    That is interested since something like 80% of people with MS have extreme heat intolerance. Haven’t heard of anyone the opposite, though some say extremes in either direction no good. Me? I need meat locker temps in the summer and ZERO heat in the winter at home.

    Check out a fleece co called Acorn, keeps you nice and toasty.

    • Richard M. Cohen July 21, 2014 at 7:52 am #

      Beth-

      I am taking back my engagement ring.

      R.

  4. Aaron Fischman July 20, 2014 at 10:16 pm #

    I have issues with heat – everyone is happy about the warmth of summer but I fear it, spending as much time as I can inside. I feel like a vampire avoiding the sunlight and heat, and its another way how MS takes over another aspect of your life, limiting what I can do 🙁

    • Sarah July 22, 2014 at 2:07 pm #

      Me too – like a prisoner in my own home. I used to love being in the heat….walking, hiking, swimming, but like you, I fear it now.

  5. Jo Bealham July 21, 2014 at 1:56 am #

    THESE DAYS EXCESS HEAT IS MY PROBLEM. THE HOTTER THE TEMP. THE WEAKER I

    GET. ACTUALLY THE CORRECT TEMP. FOR ME IS 20*C – ANY WARMER AND I NEED

    THE AIRCON, ANY COOLER I NEED THE HEATER. JUST ANOTHER PROBLEM TO ADD

    TO THE LIST. AND I UNDERSTAND THE PAIN OF AIR ON YOUR BODY – MY LOWER

    LEGS AND LOWER RIGHT ARM (?) FEEL VERY UNCOMFORTABLE WHEN EXPOSED TO

    AIR, HOT OR COLD, MOVING OR STATIONARY. SUCKS, DOESN’T IT?

    • Richard M. Cohen July 21, 2014 at 7:55 am #

      Yup.

      R.

  6. nancy s July 21, 2014 at 2:46 pm #

    Ah, those ‘lazy, hazy, crazy, days of summer’ that I so loved. The beach – warmth of the sun, sand through my toes, jumping the waves…all gone. Working at coming to terms and enjoying what’s really important…my family, my friends.

    • Yvonne July 21, 2014 at 8:42 pm #

      I also used to love the beach. Now for some reason I can’t stand walking on sand. It’s not just heat and balance issues, it’s the feel of the sand on my feet. I think has something to do with the neuropathy. Glad I enjoyed it long enough to visit Tahiti. Do it all now because who knows what’s behind MS door #2.

    • Yvonne July 21, 2014 at 8:48 pm #

      I also used to love the beach. Now for some reason I can’t stand walking on sand. It’s not just heat and balance issues, it’s the feel of the sand on my feet. Probably due to neuropathy. I’m glad I got to enjoy Tahiti before full neuropathy set in. I tell everyone live today,especially with this crazy disease because you never know what MS has for you behind door #2.

    • Richard M. Cohen July 22, 2014 at 7:57 am #

      They are what is important.

      R.

  7. Becky July 21, 2014 at 3:53 pm #

    So glad to hear others have the same problem. Sometimes I can’t even stand the fan blowing on me,especially on my arms.

  8. Mark July 21, 2014 at 8:28 pm #

    These exchanges are so valuable. I have company! Thank you! Usually the months of July and August are killers for me. The heat and humidity are something I just can’t tolerate. But lately I notice that I get chilled when my wife has the AC on a little too much. It is becoming difficult to find my new comfort zone. Wow, I thought I was losing it. I wonder why we feel this way. Anyway, we can’t let Richard get drafted by the GB Packers or the Girl Scouts. He has to stay put and continue writing.

    • Richard M. Cohen July 22, 2014 at 8:00 am #

      The freaking Girll Scouts put me on wavers.’

      R.

  9. Yvonne July 21, 2014 at 8:35 pm #

    This is another symptom I hope I never experience. My perfect temp is 70 in my house and I haven’t used my heat in about 15 years since I moved to Fl. I live for air conditioning and keep a supply of blankets on hand for all guest who say it’s FREEZING. I become completely exhausted if I have to be in the heat for more than 15 mins. so visiting friends and family during winter or summer can be challenging so I understand being temperature sensitive. MS is such an fickle disease as it really does manifest differently with people. Each time I hear something new I’m crossing fingers I don’t get it. My transition from RRMS to SPMS this last year has given me enough to deal with already. At least for now, I’m coping and each day is a spin of the wheel and me saying “no whammys”.

    • Richard M. Cohen July 22, 2014 at 8:02 am #

      Happy you have control. I sure do not.

      R.

  10. Grandma July 21, 2014 at 9:02 pm #

    does anyone else have to wear socks and shoes 23 hours a day,even to bed? only time I can take them off is in the shower. I haven’t been able to wear sandals since 1993
    kills me when air touches my feet or legs

    • Sarah July 22, 2014 at 2:15 pm #

      No, Grandma, I’m just the opposite. My legs and feet feel like they’re on fire all the time, so all I can wear is sandals or go barefoot around the house, And please do bring on the air, but nothing colder than 70 degrees. That’s the perfect temp for me.

    • Diane July 24, 2014 at 8:26 pm #

      Socks always except for in shower. Feet “hurt” if bare.

    • Cara July 31, 2014 at 12:36 pm #

      I have to wear socks to bed. If I don’t, I stayed curled up just trying to warm up through the night. The only problem though is it causes me to become overheated once I fall asleep. Overheated=paralysis for me. The average temperature for a person who has MS is 96.9. We run a considerably lower temp than the normal population. I’ve taken my temperature many times out of curiosity and I’m normally between 96 and 97. A few weeks ago, I was at 95.7. When I reach 99, I’m running a fever. An article was published in the MS magazine put out by MS Society this spring. Also, if you google hypothermia, MS is a cause. Very interesting. I’ve had a low temp my whole life, but was only diagnosed a couple of years ago. Now it makes sense. But, YES to socks.

  11. Elizabeth July 21, 2014 at 11:01 pm #

    Went from a broken A/C two weeks ago in the hottest most humid weather this summer which I couldn’t tolerate, then got the A/C fixed, now to having my feet feel like icicles were hanging off them even with a blanket on them. I spend my day with a heating pad on on my neck and back. I am less sensitive to the heat, than I am to the sun. For 15 years I have wondered why being in the sun gives me blurry vision, shortness of breath, migraines, and horrible fatigue, like days in bed kind of fatigue.

    Funny story, I sleep with one leg under the cover (sock on) and one leg out of the blanket (sock off) to sleep. I’m convinced I’m a freak.

    And no air blowing on me. It’s painful. I’m too high maintenance. My husband’s dumping me anyways so I guess I can just look at the only bright side besides relieving the constant guilt of not being what he wants, at least I can set the thermostat at whatever temp I want.

    • Richard M. Cohen July 22, 2014 at 8:07 am #

      Please let go of the guilt. He can’t handleit or does not want to. His loss. His problem.

      R.

  12. Martha July 21, 2014 at 11:24 pm #

    I just happened upon your site and wanted to tell you what a great journalist and writer you are! I appreciate your honesty and candor. I do not have MS and I am sincerely sorry that you and others have this bastard of a disease to contend with…life is hard enough but throw in illnesses and it takes life to a whole new level.

    Concerning heat…come visit us here in Arizona. It’s hot. Very hot. My husband is one of those human Chihuahua breeds that like nothing more than sitting in a hot house and I am the opposite. Naturally, like all long term marriages that have somehow survived we will both lie, cheat and steal in order to control the thermostat. I am particularly cagey however because I wait until after he goes to sleep and then I twist the air conditioning knob down to freezing and am fast asleep by the time he wakes up at 2 a.m. frozen solid.

    I really do enjoy your biting wit! I too am a writer and I just had my first book published, and so far it’s been a complete failure…which makes me both cranky and incredibly hot.

    Cheers to you, always.

    • Richard M. Cohen July 22, 2014 at 8:20 am #

      Martha-

      Given your behabior with the AC, you sound like excellent criminal material. Come rob banks with us. Don’t give up on books. My first two were best sellers, and then I could not give my third away. Keep going.

      R.

  13. sandra July 22, 2014 at 5:27 am #

    people are different – with different needs, that’s all, no?
    I do not have MS AND I can not stand aircon. it makes me sick and gives pain to my bones.
    how can we learn to live AND enjoy in difficult circumstances?
    cultivate respect for each others needs?

    I follow the blog since a couple weeks, learned about it through a friend of mine, who also does not have MS. (we have other things 😉

    I wish you all strenght and an everyday joy in small or big things!

    • Richard M. Cohen July 22, 2014 at 8:22 am #

      Thanks.

      R.

      • Anne July 22, 2014 at 9:02 am #

        Richard, you are exactly like my daughter with regard to craving heat. She had thyroid cancer and so is on thyroid replacement. She is always cold in the summer and like you wears sweaters when others are in tank tops.

        After I was put on a MS drug, my blood tests have come back that I am slightly hyper thyroid and scans show I have 2 nodules on my thyroid. Originally I thought thyroid problems must run in the family, but since doing my own research, it seems that some MS drugs mess with your thyroid.

        So I am wondering if your sensitivity to the cold could be thyroid related. The thought crossed my mind when reading your post.

        For me I am not really sensitive to the heat, but the humidity is a killer for me. I do have problems with cold water. If I put my left foot in water that is 76 degrees or less, I will get spasms up my leg. We have a pool and no one can lie to me about the temperature because I have my own person thermometer – lol.

  14. Henriette July 22, 2014 at 3:35 pm #

    I always think that heat makes the plaque on my lesions melt and that is why my symptoms are bad in the summer. I am the happiest when walking in my friend’s restaurant walk-in freezer. I often wear a cooling vest to cool down my core. My dream retirement home would be an igloo. In cold weather I am virtually, except for fatigue, symptom free. This is the only blog I ever write on cuz it makes me feel like I’m not alone and can talk about this stuff here. You are the best for sharing…

    • Richard July 22, 2014 at 4:47 pm #

      I am sp eechless, shivering just reading your words. We are so different. I wish you the best as you freeze your butt off.

      R.

  15. jane July 22, 2014 at 4:42 pm #

    MS and heat slows me down so I am just reading the 7/18/2014 Wall St Jnl. Their Mansion section has a great article on M1 about some adaptable housing you might find interesting. Mostly baths but you can run hot water/steam to keep warm?

    • Richard July 23, 2014 at 6:54 am #

      Thanks.

      R.

  16. Andrew July 23, 2014 at 12:54 am #

    I have had exponential fatigue when in heat and humidity. But since heart problems, a pacemaker/defibrillator and being on blood thinner medication, my feet are always painfully cold. I look so stylish in knee high support hose, with my sheep skin wooly ankle-high moccasins and Bermuda shorts. The great thing about being older (than 60) is not caring if I look “eccentric.” I have had blasts of cold air cause me double vision–medical solution: put on an eye patch. So now I am interested in dapper hats to complete the ensemble.

    • Richard July 23, 2014 at 6:58 am #

      Interesting summer style.

      R.

    • Grandma July 23, 2014 at 10:26 am #

      Andrew You just made my day! I laughed so hard just picturing you. I am sorry however that you hurt. Keep that wonderful sense of humor about it,some people know exactly how you feel and you make them smile!

      • Richard July 24, 2014 at 10:32 pm #

        Worth it.

        R.

    • Sandy July 23, 2014 at 10:47 am #

      I see an MS fashion show in our future. Better yet, lets take photos of ourselves in our best coping garb and send them to the MS magazines so readers can see what an MS person really looks like. Oh and you get extra points for a cooling vest or headband.

      I myself have a real problem with heat. I have to have AC and in the winter I keep the house cool. My husband comes home from work and either puts wood on the fire or turns up the furnace. I like it in the mid 60s.

      I also noticed a few years ago that clothing on my arms and legs adds to my overall fatigue and causes increased pain on my skin. So I generally wear shorts and sleeveless tops year round around my house. I like to add wool socks and slippers….so show me to my runway!

      Imagine what the descriptions will be when we rob our bank.
      Sandy

      • Richard July 25, 2014 at 3:07 pm #

        Sandy-

        The teller may laugh hard enough he/she does not notice the money gone.

        R.

  17. Bill Garcia July 23, 2014 at 10:50 am #

    I know how you feel. I live in South Louisiana where the heat and humidity makes it feel hotter than hades outside. My wife and son crank the A/ C down and I walk around with a sweatshirt on. When it gets terribly bad I have to add the sweat pants. It’s kind of odd how one can have heat intolerance yet can’t stand the cold either. What a weird world we MS’ers live in.

    • Sarah July 23, 2014 at 11:33 am #

      Hey Bill – I’m in south Louisiana too. I have the same intolerances to heat and cold. My son is hot natured, and always wants it freezing, and I need the thermoset set at 70 with the shades and curtains drawn all the time. Sometimes, if I get too cold, I’ll stand in the doorway that the sun is beating down on, and get my three to four seconds of heat. That’s all it takes, then I shut the door and try to find something to do that’ll keep me busy and warm.
      What a life – I always dread summertime here. Wish I had a summer home up north where the temps were more even keeled, but the temps nationwide are up and down all the time these days.
      Oh well, another pipe dream that’ll probably never be……

    • Richard July 25, 2014 at 3:08 pm #

      Amen.

      R.

  18. Joan L July 23, 2014 at 11:13 am #

    I am never comfortable. I have two temperatures, freezing or flashing.I am sitting here with a down blanket on me in the air conditioning. I go outside often to warm up. However, it is humid here so in not too long a time I have a hot flash and have to go back inside. I take jackets and lap blankets with me everywhere in the summer. In winter time I am still wearing my down blanket.

    I swim in a cold cool 3x per week and the water is cold. I hate that but that is what I need to cool my body down in the summer and enable me to exercise. Then I rush to the hot shower to warm up. My feet/legs are ice cold while I flash and my head/neck is sweating. Crazy crazy MS!

    • Richard July 25, 2014 at 3:10 pm #

      Agreed.

      R.

  19. Joan L July 23, 2014 at 11:13 am #

    Pool

  20. MB July 23, 2014 at 1:54 pm #

    Pre-MS I would have been excited to see a small wrapped gift box under the Christmas tree for me wondering what type of jewelry was inside. Now I’m elated when I open a gift and see a Gander Mountain box. That usually means I have a pair of 40 below hunting socks waiting for me to slip them on.

    And who said diamonds are a girl’s best friend?

  21. Kate Aquilino July 24, 2014 at 10:30 am #

    Yes. I get what I call cold core. I thought it was from trigeminal neuralgia but also ms. I wear a wool beret all the time, even while sleeping. When I’m out of bed, on top of that, I wear a hooded sweatshirt. And it’s 77 inside and 85 out! Even I think I’m nuts!

  22. Kate Aquilino July 24, 2014 at 11:14 am #

    One helpful hint…rub coconut oil all over your body and don’t wash off (right away, anyway). It feels like silken long johns.

  23. Jeff July 25, 2014 at 2:28 pm #

    I’ve learned not to get my hopes up when any “MS Cure” related news comes out, but none the less, this seems it may good news for all of us???

    http://medicalxpress.com/news/2014-07-scientists-closer-cell-therapy-multiple.html

  24. Wendygilmo July 25, 2014 at 11:31 pm #

    Very funny Sandy!!

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