Hot as “Hell” and Missy
I think I took a trip to hell Wednesday—-You know the expression everybody in “hell” wants ice water—-That is how I knew I took a trip to hell—-I wanted ICE WATER—-and not to drink—-I wanted to swim in it—-It is that hot here—-and Missy knows it—-not just me.
Should I whine—bitch and complain—-You bet I would if I thought it would help—-but I know it will do nothing for me and I’ll have others feeling pretty bad—We all know I don’t want that—- So there is no Whining!—-Just sharing my life—–The Good The Bad and The Indifferent—-
Well right now if I were to classify things I would say—-oh you decide that one—
I try very hard not to complain but from time to time I have an occasional pity me moment and I travel to the basement—usually it is direct reflections on my health—Missy (Multiple Sclerosis) rears her head.
I know many people have health issues much worse than mine; I know I am fortunate—
However—-you are about to receive a little education on Missy and my life as it is right now—
Remember I am not whining I am teaching—-
For many with multiple sclerosis (MS), the approach of summer fills them with anxiety. Hot weather means MS symptoms and, well, suffering. As most people are going outside to enjoy the hot weather, I am drawing the blinds and resigning myself to cleaning out closets and reading novels. Even vacations are a challenge, I look for places where it will be cooler or for “adventures” that take place in air-conditioned coolness.
Heat intolerance in MS shows up as a “pseudo exacerbation” — the experience of having symptoms appear or worsen due to heat exposure. This is different than a true relapse. In the case of a pseudo exacerbation, when the body’s temperature returns to normal, these symptoms disappear. No damage, such as inflammation, demyelization or new lesions, has been done during these pseudo exacerbations.
What Does It Feel Like?
Heat intolerance is felt as increased symptoms, such as:
* Decreased cognitive function
* Numbness in the extremities
* Fatigue
* Blurred vision, known as Uhthoff’s sign
* Tremor
* Weakness
* Dizzy
* Pain
Really, any MS symptoms can be much worse in the heat. Sometimes, symptoms appear that we might not have felt before, which is the result of a lesion in a corresponding area of the brain or spinal cord that was slight enough that it did not cause a relapse or symptoms dramatic enough to notice. For instance, Uhthoff’s sign refers to blurred vision as a result of heat exposure. This is caused by a lesion on the optic nerve, known as optic neuritis. However, many people that experience Uhthoff’s sign never had classic symptoms of optic neuritis and may be unaware that they ever had it until the appearance of Uhthoff’s sign.
Heat intolerance differs for people in terms of:
* Threshold: Some people can be just fine taking a brisk walk in 90-degree weather, as long as they avoid the sun and drink cold beverages. Others start feeling symptoms at much lower temperatures and with much less activity.
* Severity and type of symptoms: Again, depending on the person, symptoms can range from annoying (such as tingling in the feet) or debilitating (such as crushing fatigue or severe weakness).
* Length of time to resolve symptoms: While all symptoms that are results of heat intolerance should resolve once body temperature returns to normal, this takes longer for some people.
What Causes Heat Intolerance?
People with MS have plaques on our nerves where demyelization has taken place. This slows the ability of the nerves to function, and heat further slows down nerve impulse transmission in demylinated regions. Even a very slight increase of as little as one-quarter to one-half a degree in the body’s core temperature is enough to cause symptoms of heat intolerance.
How Common Is Heat Intolerance?
While I don’t have an exact statistic on this, I can say that most of us are sensitive to the heat. For many years, the “hot bath test” was used to diagnose MS. A person suspected of having MS was immersed in a hot tub of water, and watched to see if neurological symptoms appeared or got worse, which would earn them a diagnosis of MS. (This practice was stopped when MRIs came on the scene, but is still practiced in some countries where MRIs are not readily accessible.)
How Severe Can It Get?
For some people, heat intolerance can be debilitating enough that they are unable to function well at even slightly elevated temperatures and must consider moving to a cooler geographic location. Deaths have even been reported among people with MS who were sunbathing or relaxing in hot tubs and presumably lost the ability to get out of the heat. A slight fever with an illness can be very devasting.
Additional Points:
There are some people who are more sensitive to cold than to heat, and their symptoms - especially spasticity - worsen in cold temperatures. Some of us unlucky people with MS are sensitive to both cold and heat, usually with different symptoms appearing under different temperature extremes.
And now—-drum roll—this is all about me—and Missy.
It started out innocently enough — a short trip to the grocery store with my husband. We left early in the morning to avoid the heat as much as possible. OK, so maybe it was already in the 80’s it was only 8 AM—and I’m not a morning person. Still, I thought I was prepared for the effect the heat would have on me. I dressed in cool clothes and took one frozen bottle of water with me.
By the time I walked from the SUV to the store—even though I was parked in a reserved parking spot—for those that are able-bodied like me, I knew I was poorly prepared for what the heat was doing to me. My feet and lower legs felt so heavy, it began to feel like I was walking through knee-deep mud. I felt my old friend, the MS hug tightening around my ribs and making it difficult to breathe. Even my hearing started fading in and out, like a bad cell phone connection. I’m nauseated, numb in many areas and my vision is blurring—and getting wacky on me. All of this is also causing some dizziness.
We finally get inside, where the air conditioning is blasting. I grab a scooter knowing this is the only way any shopping will be done. Within just a few minutes of being inside the cool environment and heading to buy a bottle of water things started to come back into focus. A few minutes later, I tell myself I can do it—I can do it.
Hubby is saying are you sure you can do this—I’m thinking to myself—I can do it —I can do it—just like the little engine that could—I was going to do it. Moving as quickly as possible to get all we have on the list—-things begin to get a little dark and I go very white—needless to say it was time for the shopping to abruptly end.
When it was time to leave, my husband offered to go get the SUV and bring it to the door to pick me up. Interestingly, I felt this way the whole way home. I guess I had not sufficiently cooled down and that the heat had affected my core temperature.
I wish I could find a way to accept my limitations graciously, but I will be one of the first to acknowledge all I manage to do is get really pissed off. This is something I can not change and I waste time dwelling on it at times—-like right now. I hate that I can not ignore Missy and do things I want—which are not as much as it was at one time—I just want to enjoy life—a normal one. I hate that the fatigue, the decreased cognitive function, the numbness in my extremities, the blurred vision, the tremors, the dizziness, the pain —well I hate what Missy does to me.
I twill take me days or weeks to get to an even keel and I might not get all the way back where I was. The thing I hate most is seeing the worry in my husband’s eyes when I fall down because I have no sensory input telling my leg is twisted and not going to hold me up or when I try to talk and the wrong things come out because I can not think of what the words are—or I just forget in the middle what I was saying.
I think I will stay at home—where it is air conditioned in front of a fan—even with the air conditioning blasting— it is hot as “hell”—and I am not feeling energized and gleeful—-not at all like a long haired dog being let out—to sniff the air and wagging from side to side, forward and backward, or up and down—-rapidly and repeatedly—-No I don’t feel like that long haired dog but right now I might look like one.
For now I think I’ll just look out the window at the shimmering heat—and hope this passes soon—because I have a life I need to get back to. Part of the life I need to get back to is here with you my friends. So if you don’t see me around—know it is still hot as “hell” and I’m doing the best I can.
By now most of you know I return —-I hope it will be sooner than later but it has taken me hours to type this so until I am feeling like that dog—-energized—-instead I am drained— and if the heat is not enough today my chemotherapy was increased.
August 11th, 2007 at 11:39 pm
Thank you for letting us know a bit more about how things, heat in this case, affect Missy. Learning things like this can help all of us better understand what you go through in a day. I also hope the weather will cool before long where in so much of the country it is a lot hotter than normal.
Thanks for your visit. I know it is not easy for you to visit on a regular basis all those who visit you but please know it is really appreciated. And yes, it is becoming “our” house now.
August 12th, 2007 at 1:55 am
It is hard to accept that our body can’t do something that we used to be able to do. I found that out through a work injury, my brain would command my right arm to move faster, but the arm couldn’t do it. Actually it’s scary. It sucks and it’s your blog, so you can whine and complain as much as you like. I found throwing myself a pity party felt real good sometimes
We had cooler weather and clouds today and now rain. I’ll trade you our weather for yours.
I hope this will pass soon!
August 12th, 2007 at 2:34 am
Dear Vickie ~~ Thank you for that post- helping us to understand MS better. I am so sorry the heat makes everything worse for you, so stay in the cooler home, even though it’s still hot. At least you can rest, and I am sure your husband can and will do the shopping for you. Take great care, my friend and hopefully you will soon feel better again. So glad you like the picture of the soldier with his grass. My wrist is fine, has a ganglion on it which we leave, at least until it causes trouble.My prayers are with you dear Vickie
Much love, Merle.
August 12th, 2007 at 3:17 am
Vickie,
I’m very sorry for all the heat. My sis-in-law Wendy wilts in the heat.
When you have to be away from the AC, I think wet clothing helps. She wears long sleeve gauze shirts over her regular clothing and soaks the overshirts in water when she gets a chance.
Even worse for her than a hot day is a fever, even a couple of degrees renders her unable to walk or get out of bed.
Hang in there and thank you for bringing awareness to a disease that is poorly understood by many.
August 12th, 2007 at 4:32 am
Hi Vickie, As you know I understand perfectly what you are talking about. I dread the Summer for the same reason and even though we couldn’t really afford it, its why we got a pool. When it gets too much I immerse myself in the cool water until I feel my body lose some of its weakness. I hate the fatigue the most. People always say “oh we’re all tired” but they don’t understand how different this type of fatigue is. It feels like a crushing weight you can’t get out from underneath. I get a lot of numbness in my hands which is awkward and makes me clumsy. I don’t have the severity of demyelization you have but I get spasticity in my legs if I try to run. Oh and the Missy hug when you move faster than you should and it squeezes you round the ribs til you can’t breathe….scary. I know how frustrated you feel Vickie and I think you should whine and complain if you want to. We are all your friends and that means in good and bad times and every one of us cares about you and your health.
Thankyou for helping people understand what MS is like. It isn’t fair and the fact you came and visited me today even though you were feeling so unwell says more to me about the beautiful caring woman you are than anything ever could.
Take care and hopefully Missy will find the weather intolerable too and will take a hike somewhere else. I’d like to kick her ass for you.
August 12th, 2007 at 8:02 am
Hi Vickie, it sure sucks that the heat can knock you about like that, I’m not a lover of hot weather either but with me its a matter of feeling comfortable not getting sick and unable to function.
Our summer is approaching so that means your winter is on the way…. feel better.
August 12th, 2007 at 8:50 am
i so appreciate you writing this! it IS terribly difficult with the heat. it has been over one hundred degrees here recently. it sucks! i lost my ability to speak one day. i am new to all this MS stuff and i am still trying to find my normal. the heat just fries my brain and i am beginning to fear it. thank god for air conditioning.
i am going to add you to my links at my MS blog.
August 12th, 2007 at 9:19 am
It seems to me, you live with Missy more graciously than a lot of people do or would in similar circumstances. Having said that, I fully understand how pissed off these maladies can make you feel. It sucks!
Even feeling so down trodden and ill, you still take the time and make the effort to educate others about MS. Actually, Ms. Vickie, I think (in the times when you are feeling up to it) you could write a book about your experiences further educating others. You, my dear lady, are a teacher of real life. If you don’t feel like typing, you could dictate these experiences, and someone could write it up (I would volunteer).
Love you much.
August 12th, 2007 at 9:22 am
I am one of those that knows very little about MS so I truly appreciate this post. Very informative!
I greatly admire your determination to keep fighting this and make your life as normal as you can.
You are truly an inspiration to us all, to keep fighting our way through life, and don’t give up no matte what!
August 12th, 2007 at 9:33 am
I know how the heat affects you. I know that people who just look at you, don’t realize just how much you struggle to maintain your strength and independance. It is part of what makes you so unique and so YOU. I cannot wait for Autumn, I can only imagine how you must feel. Please take care of yourself. You don’t have to be so stubborn all the time you know! LOL (((HUGS)))
August 12th, 2007 at 9:35 am
BTW you can email me at beeing.myself@gmail.com or add my yahoo name beeing.myself to your list. Hope to talk soon when you feel up to it. Luv ya!
August 12th, 2007 at 5:17 pm
Thank you for sharing with us about what you’re going through. My sweet friend, you are a hero, someone to be admired. I pray the cooler weather comes early this year and brings you relief.
August 12th, 2007 at 11:09 pm
hang in there! september is coming (I think).
August 13th, 2007 at 6:27 am
Hi again Vickie ~~ Thank you so much for your comments and kind words. I am glad you enjoy my posts. I hope you are feeling a little better
for some rest. Take great care, Love, Merle.
August 13th, 2007 at 8:11 am
hopefully cool weather is right around the corner!thnx for explaining what your going thru. and, it’s your blog you can whine and complain as much as you want to, right?
((hugs))
August 13th, 2007 at 11:53 am
Hang in there and know that we are here thinking of you and praying for you. I hope things cool down soon for you.
August 13th, 2007 at 12:09 pm
Thanks for exposing Missy to the harsh light of your blog. Too many times people don’t see a disability as a real problem. Sometimes you just can’t do something and there is nothing anybody can do for you. It’s frustrating and draining.
I hope you are better today.
August 13th, 2007 at 2:05 pm
August 13th, 2007 at 2:40 pm
I am sorry the heat is creating such an increase in your symptoms. The heat cant last for too much longer. You really make me understand what MS is all about. As a nurse, you have made me better equiped to help patients who are affected with severe Missy . Usually, by the time I see them, there condition Has mostly imobilized them. Because of your posts, I have had a greater understanding and have been able to use that knowledge to better serve my clients and to also educate the care aides.
Thank you so much for taking the time and effort it took to post this.
And Vivkie, never worry about “Whining” Your friends here will always try to encourage you. I could never accuse you of being a Moaner!(Maybe Carl can!!!)
August 13th, 2007 at 2:46 pm
I know how hot it has been there and how Missy takes advantage of the situation. I hope a cool spell moves in and gives you a little help in dealing with alot of it.
I know its but ai little help in dealing with
August 15th, 2007 at 8:39 pm
The kind of heat we’ve been having is difficult on anyone and Missy just makes it so much worse for you.
Thank you for this post. Some of this I had no idea about.
August 16th, 2007 at 4:13 pm
Hang tough, sugah, hang tough. We’ll all keep our fingers crossed and hope you don’t have any power outtages.
August 17th, 2007 at 8:28 am
The heat and humidity gets to me, but my body isn’t acclimized to it, I can’t imagine what it must be like for you.
I hope you are staying as cool as possible.
August 18th, 2007 at 10:22 pm
I had no idea that heat had that kind of impact on you. Thank you for sharing a little bit of what it is like to have this unwelcome visitor in your body. I am praying that you all get some relief from the heat soon and that you start to gain some energy again. XO
August 21st, 2007 at 7:56 am
i truely feel for you,
my soul burns with pain at your fears and suffering
your in my thoughts from this moment on
August 23rd, 2007 at 3:49 am
Hi Dear Vickie ~~ I am sorry I have been so long replying to the kind message you left on my blog. I am feeling OK again now, can’t let sadness take over. Thank you for your kind
encouragement. I do hope You are feeling a little better and that the weather is starting to cool down a bit, so that will help a little.
Do take care my friend, Much love, Merle.
September 7th, 2007 at 7:37 pm
Great informative post. I thought I knew a lot about MS, but you made it even more real and more informative by telling what you go thru. One tough illness to handle. I wish you all the best.
Hope it has cooled down some where you live. It was back in the 90`s again here today. It went down into the 30`s a couple nights ago. One never knows what tomorrows weather will be like.
Take care, I`m sending you a Hug filled with prayers to make you feel better.