My Experiment With MS and Double-AC

As most MS veterans know all too well, summer is the hardest time of the year. The reason is simple enough: MS is heat-reactive*. Even a change of just a few degrees can make a huge difference.

I put that supposition to the test this summer with a different way to beat the heat with a method I'm calling "concentrated air conditioning" or "double-AC." This is when you cool the whole house via central air, but have a secondary unit in one or more rooms to keep those rooms several degrees cooler than the rest of the house.

My husband was the main proponent behind this summer's experiment. I was more than happy to oblige, as I often feel guilty that everyone else in our home has to shiver in order for me to keep my symptoms at a minimum, especially at night. It's always bothered me that my kids had to sleep under heavy blankets in July. Well, with concentrated air conditioning we were able to keep the rest of the house at a reasonable temperature (65-68 degrees) while my bedroom, where the secondary unit is located, could keep me comfortable at a brisk 58-60 degrees.

Now, that doesn't sound like a difference of very many degrees, but it has made a huge difference in my summer experience. I've used less Baclofen, less pain medication (both narcotic and non-narcotic) and suffered less insomnia and less of the crushing summer fatigue that is a hallmark of MS. Nausea was so appreciably lessened, I stopped taking Phenergan for the first time in several summers. I have not suffered a single serious fall or injury, and for the first summer in recent memory, I was not completely reliant on my wheelchair for outdoors excursions. For me, that is a very big win: I got to leave the house with a cane...in the summertime! Even my doctor noticed and was pleased.

Now, that isn't to say that this method hasn't helped all symptoms or had its downsides. It naturally did not remove or relieve all heat-reactive symptoms: summer fatigue is still an issue, more frequent muscle spasms and nerve shocks were woefully common. Bladder issues remained unaffected. Optical problems like eye twitches, blurry and double vision were just as problematic as they had been last year. The experiment had no appreciable effect on vertigo, muscle weakness and "nerve burn." Tremors, which are a relatively new symptom for me, became worse and were quite noticeable. And frankly, nothing gets rid of the pain, especially trigeminal neuralgia pain, entirely. Some of that pain came as a result of discovering that placement of the secondary AC unit means everything (location, location, location). Do not position the unit in such a way that it blows air directly on your face. Even something that innocuous can cause a full-blown TN attack. Lesson learned.

The biggest disappointment of the last few months? Being too sick to attend my goddaughter's birthday party for the first time. I was able to see her later in the evening, when it had cooled down somewhat, but I still felt terrible about it.

Additionally, it had the unfortunate side-effect of making me a virtual prisoner in my bedroom, as the difference in symptoms and severity was striking when spending even short amounts of time in other rooms of the house. For example: last night, we has a nice family meal. My husband grilled, while my daughter and I made pasta. By the time the pasta was done, the combination of lower AC temperature and the heat generated from cooking had caused me to feel nauseous, light-headed, dizzy, shaky and my blanca was very precarious. I ended up eating dinner in my bedroom. For the rest of the evening, I had a very noticeable increase in muscle spasms, nerve shocks and the trademark MS symptom "pins and needles" (think about how it feels for your foot to fall asleep, now transfer it to any part of your body and multiply it by a factor of one hundred). It is now past noon on the day after, and I am struggling with nausea, nerve shocks, fatigue, vertigo, muscle pain and a vicious attack of the trigeminal neuralgia (which may or may not be related to last night's culinary adventure).

Naturally, when I began this experiment, I searched for the silver lining of being confined mostly to one room. My closet is in desperate need of re-organization, I am pathetically behind in personal correspondence, and, above all, it would give me some much-needed time to do research and work on my book.

These were all suppositions I made going into this experiment. What I did not anticipate was that keeping cool would not affect the pain-in-the-rump symptom of MS I call MS Fog. That's a blanket statement for all of the meddlesome cognitive issues that MS saddles you with and that naturally get far worse in the summertime. You read a book, only to discover you've been reading the same page over and over again for an hour. Your short-term memory and concentration ability is just shot. Add the Fog to the crushing summer fatigue, and just making plans is exhausting to near-incapacitating levels.

Of all the things I had hoped to accomplish during this experiment, only research actually got done. And to be honest, not as much as I had hoped.

So now that summer is blissfully almost over, and I am enthralled in the Battle Fatigue state (the inevitable end-of-summer condition where the symptoms feel worse than they actually are because you are so very worn out from fighting them for months), what have I learned from this experiment?

First and foremost, I believe it has been a success. The aim was for me to feel better than I did last summer, and without a doubt, I do. This summer has been so much easier, in so many ways, than I had any right to expect. I am pleased that I needed less medication and less medical interventions than I am accustomed to this time of year. I slept better, ate better and felt better. I really enjoyed my birthday (July 31st) for the first time in years.

I've learned a great deal about my MS from this experience. I've discovered that just because it is nice and chilly indoors doesn't mean that higher outdoor temperatures won't cause my MS to react. My husband and father-in-law suspect that this may have something to do with ionization. They are debating a possible future experiment with deionization. It is uncanny how I can always tell when it is hot outside, even if it's chilly enough to make ice cubes in my room. I know from speaking to many others with MS that this is a common experience.

I've also learned that I need to develop some new, Fog-resistant hobbies. I cannot rely on reading (including the Internet), and even moderate chores or projects will most likely be beyond me when temperatures soar. I'm not sure what these hobbies will be, but I look forward to discovering some new and wonderful time-waster.

I have also kept up with my experiment of summers past: if it's over 100 degrees (or likely to be), I check into a hotel and avail myself of the indoor pool and jacuzzi. Not only does it continue to prevent me from getting sicker, but for several days afterwards my legs feel stronger and I have less weakness and spasms. This is now my seventh summer of this practice, and the results continue to be consistent and positive. To say that I am happy about this is an understatement...and the kids enjoy the little adventure.

All in all, I think I will continue with the double-AC experiment next summer. Not only because it has helped me greatly this year, but because I am aware that any experiment (even an experiment of one participant) to be considered successful, it must be capable of being replicated. And the more time I put into it, the more I can improve the method and get the best possible results.

Would I recommend double-MC to other MS Warriors? Well, like everything with MS, just because it works for one person doesn't mean it will be the least bit helpful for another. And there is a noticeable increase in energy bills related to this method that had to be taken into consideration. We purchased a new, energy-efficient model, but it was far from inexpensive to buy or to operate. I also think if you are the sort of person who is susceptible to cabin fever or would consider spending the better part of three months or more in one room to be torture...this is probably not for you.

But even in the midst of the dreaded MS Battle Fatigue, I am confident in and grateful for my husband's diligence (and scientific curiosity) that fueled this experiment and gave me the best summer I have had in more than a decade. I love you, sweetheart!

Stay tuned next summer for Year Two...


*The majority of MS patients have heat-reactive issues. However, some do not. Some even have the opposite, and find that cold exacerbates the disease. And a small minority have both heat and cold reactive multiple sclerosis. As usual, MS is very individual and I speak more to my own experience with the disease rather than MS in general. Please keep this in mind when reading any first-hand account of the illness. In other words: your mileage may vary.

Beauty is in the Eye of the Beholder

Beauty is in the eye of the beholder.

But what happens when the beauty and the beholder are one and the same?

I belong to a moms group online, and one of the topics today concerned our self-image. Specifically, we were asked to rate ourselves on a scale of one to ten. We were further asked if we had always felt that way about our appearance.

It made me think, very hard, about who I am on the outside. And about how my appearance, and how my perception of it, has affected my life.

Now, most people would say that beauty is only skin-deep and that beauty is in the eye of the beholder. I agree with both of those axioms.

Let's take Skin Deep first. I, like most people, have known physically attractive people who were beautiful only on the outside. I knew a girl in junior high (let's call her Amelie) who was very beautiful. Perfect complexion, lovely wavy black hair, stunning blue eyes with the color of Paul Newman and the shape and lashes of Elizabeth Taylor. Her last name was French and sounded very sophisticated to my young teenaged ears. Amelie was popular, adored, rich...and a terrible bully. The most awful, ugly things would come out of those perfect, bee-stung lips. She does not belong to our alumni association. Sometimes, I wonder where she is and how she is doing. Did she lose the entitlement and cruelty and become as pretty inside as she was outside? Did the last 20 years do a number on her once remarkable looks, at long last teaching her humility? Or is she someone's trophy bride, sneering down her nose as she belittles the scores of people in the service industry who can't avoid coming into contact with her?

And then, there was my stalker. To call him attractive is the understatement of the century. He had gorgeous cafe au lait skin, bedroom eyes and hair like Antonio Banderes. He was so good-looking, so charming, that it was very easy for him to manipulate others. He once told me he could get anyone to do anything, if he tried hard enough. He could turn friends I'd had for years into sworn enemies in less than the time it took to watch a movie. And as a con artist, he was an expert. Even after people realized he'd scammed them, they would have a hard time accepting it. It was just very difficult to believe that someone that beautiful could do anything so bad. Even worse were the people who knew fully well that he was taking them for a ride, or worse, abusing them...but let him get away with it, because he was so very beautiful. Some of them even considered the financial and/or emotional hit they took from him as being completely worth it. He was a big believer in a different axiom: live hard, die young, leave a beautiful corpse. I was not at his funeral last year, but I have no doubt he got his wish.

On to Eye of the Beholder. There are some people who vehemently disagree with that axiom. They believe that there is really only one standard of beauty (generally, Hollywood's or Fashion Week's), and everyone who falls short of it is really just kidding themselves. They remind me of the following dialogue* from the episode "The Wink" from the sitcom "Seinfeld":

JERRY: Elaine, what percentage of people would you say are good looking?
ELAINE: 25%.
JERRY: 25%, you say? No way! It's like 4 to 6%. It's a 20 to 1 shot.
ELAINE: You're WAY off.
JERRY: Way off? Have you been to the motor vehicle bureau? It's like a leper colony down there.
ELAINE: So what you are saying is that 90 to 95% of the population is undateable?
JERRY: UNDATEABLE!!!
ELAINE: Then how are all these people getting together?
JERRY: Alcohol.

Now, I quite emphatically disagree with the notion that there is only one standard of beauty. To be frank, I can't understand someone who does subscribe to that point of view in light of all the evidence to the contrary.

My late Granny liked to say, "It takes all kinds of people to make a world." And just like how diverse tastes in music, hobbies and food are in the human race, so also are the standards of beauty.

For example, I prefer a man with dark features. I just love a man with dark hair and dark eyes. I also prefer a man with tattoos (it's no surprise that the Male Unit has dark brown hair, brown eyes and tons of tattoos). However, I am well aware that some women prefer blondes and others find tattoos a turn-off. Men are famously split into camps of breast men, leg men, derrière men, and so on. Some men love women with curves, and others prefer a more athletic body type. Some women love a six pack, others think they look like dinner rolls trapped under the skin (present company included). There are people who are attracted to dreadlocks and those who really get excited by a good spray tan. There are people who feel their pulse race at the very sight of a steampunk, a hipster, a nerd, a Juggalo. And don't get me started on natural versus fake breasts!

I also think that love makes you see the object of your desires as being far more attractive than those who were not shot by Cupid's arrow. A whole (very mindbogglingly terrible) movie was based on this premise: "Shallow Hall." In that film, the male lead sees his girlfriend as thin and gorgeous...when everyone else sees her as morbidly obese and plain. Alcohol can give you rose-colored glasses for a night, love can give them to you for life.

You may have noticed that I haven't really answered the questions. Well, I did answer them on the board...and below is my reply, expanded:

When I was younger and not sick, I was a solid seven on good days. I'm more of a five on good days now.

Oddly enough, I am happier with my five than I was with my seven.

How can this be? After all, I've dropped two places at least. To be blunt: I did not think I was anywhere near a seven back then. I was so self-conscious! Looking back, I wish I had not been so down on myself. I wish I had appreciated being young, healthy and not bad looking. But instead, my self-esteem was in the basement. I thought of myself as extremely unattractive and very fat (I don't know what I was thinking.) I once read that the body you hated in your twenties will be the body you long for in your thirties. It's a stereotype, but damn if I don't prove it true.

It didn't help that my two full sisters and I were forever being pigeonholed as the Talented One (me), the Smart One and the Pretty One. The Pretty One was not just pretty...she was very, very pretty. She even modeled for a time. I was proud of her, but admittedly it would sometimes hurt when I became invisible when she was around (and given that I am a punk, that's saying something.) One incident remains vivid in my memory (if only I could will the MS to lose the bad memories, instead of making me forget what I did for last Valentine's Day and where are my house keys again?!?). A boy I'd had a crush on for some time was actually flirting with me at a house party. I was thrilled. Enter the Pretty One. He forgot I even existed.

The Smart One was quite jealous of the Pretty One. Resented the hell out of her. So the Smart One from time to time lashed out, cruelly taunting her and telling her she was dumb and ugly. Now, I admit I was occasionally jealous, but it was easily deflated in the face of the Pretty One's personality: very nice, very sweet. Had she been stuck up or vain, she would have been insufferable. But she was nothing of the sort.

Ironically, we were each envious of the others in our own way. I was jealous of the Smart One for playing violin much better than I did and I was jealous of the Pretty One for effortlessly getting the attention of an entire room just by stepping into it. The Smart One was jealous of the Pretty One's looks and my popularity. The Pretty One was jealous of my independence and the Smart One's intellect and grades. I imagine sisters the world over can empathize.

To add insult to injury, I often overheard (and sometimes it was said to my face) that it was not only too bad I wasn't pretty, but I was pretty much a freak of nature. Enter yet another stereotype: the very widespread belief that "mixed" children are unbelievably gorgeous. Remember, I was growing up in the shadow of the "Cosby Show." The worst was a certain family acquaintance who liked to say I was "the exception to the rule." One person liked to point fun at a mole I have just above the lip, in a very different spot than Marilyn Monroe's beauty mark. Mine was called my "unbeauty mark, and hey! It works!" These comments were said almost exclusively in front of others, as a way to garner laughs at my expense. I got so sick of hearing it, I even tried to remove the mole myself (it didn't work, and I was taunted for the attempt.)

The next big hit was the MS. I have heard comments to the effect of "you must take care of your man because it's pretty much impossible to get a man when you're in a wheelchair." I have "too much baggage." Who wants to date a woman who will someday be more of a patient than a lover? The people who say these things are not trying to be cruel for the most part. They seem to genuinely believe what they are saying is true and helpful. It's neither.

This is why I like the show "Push Girls." It's helping to show the world that being attractive and being in a wheelchair are not mutually exclusive.

It's all academic anyway, as I am happily married and intend to stay that way. And the MS couldn't get my husband's love-induced rose colored glasses to budge an inch. I'm a blessed woman: I have seen the statistics and heard the stories. I know how often spouses jump ship when you get sick and/or disabled. The Male Unit? Still here. :)

The older I get, the more comfortable I get with myself, both inside and out. There are some things I am working on and others I am not happy with but cannot/will not do anything about (elective surgery for the purposes of vanity does not appeal to me.) But in general, I can live with my five, happily aware that the Male Unit would find that number to be far too low.

I just wish I could have been more happy with myself when I was 17, 18, 19. But I think that is a malady common among women.

And brings to mind the last old axiom of this post: you don't know what you've got til it's gone.






*Many thanks to dailyseinfeld.com for the quote...my memory of this scene turned out to be very faulty indeed! If you're a "Seinfeld" fan, check out their site. They are truly masters of their domain!

Insomnia, Begone!

Well, it's summer again...time for nerve burn, nerve shocks, tremors, muscle spasms and insomnia. I call it Summer Sleepless Nights.

I think what irritates me most about SSN is that it's not in any way functional insomnia. You will get nothing done with your extra hours of consciousness, because between the pain and the bone-crushing fatigue...you are too damn sore and tired to accomplish anything. Even reading a book can be taxing.

I know that summer will be over soon, and the near-constant rains that define Portland as Puddletown will soon be upon us.

Until then..I am hanging in there.