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.

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.

Checking In...

I know I haven't been blogging much here lately...and I do hope to change that soon. The weather has changed AGAIN and left me reeling from fatigue so bad I feel I can hardly get out of bed...and when I do get out of bed, I don't accomplish much else. All I can do is rest, and ride it out, and hope it ends soon.

Too Darn Hot

"According to the latest Report
Ev'ry average girl you know
Much prefers her lovely doggie to court
When the temperature is low,
But when the thermometer goes 'way up
And the weather is sizzling hot,
Mister Adam
For his madam.
Is not,
'Cause it's too, too
Too darn hot,
It's too darn hot,
It's too darn hot."

---from "Kiss Me, Kate"




The past week or so, it's just been TOO DARN HOT!!!!!

But Monday was the absolute worst...according to one station, it was over 100 degrees. So I, not wanting to end up in the hospital if I could possibly avoid it, decided to do something about it.

I'll back up for a moment and say: I've been feeling very, very sick lately. And an unexpected heat-wave that started last week was NOT helping matters at all. A few days ago, I was actually trapped on my stairs for half an hour, unable to get up and walk down or up. I couldn't keep even liquids down, and the pain in my face was unbearable. Saturday was awful, and Sunday was even worse. I watched the Weather Channel on Saturday night, horrified by the prediction of a 103-degree Monday.

Now, I do have air conditioners, but this is an old house. Even with air conditioners and fans, there's no way I could combat a 103-degree day.

That's when I decided to take the advice of some of my fellow MS-ers from my support group: I booked a hotel room for the day.

Check-in was 4PM, but after explaining the situation to the front desk clerk, they graciously allowed us to check in at 1:00, thereby avoiding the worst of the heat. Jonathan went to the room ahead of us, and turned the air conditioner on full-blast. I packed an overnight back for all of us, and headed out to brave the heat.

It was so hot, even at just a little past noon, that I could feel the heat in waves, crushing me. I nearly fell over, and had to be helped into the car. Stunned, all I could say was, "It's so HOT!"

By the time we arrived at the hotel, the room was nice and icy-cool. The kids looked upon it as an adventure, and looked forward to the promise of swimming in the hotel's pool the next morning before check-out. The room we procured was on the second floor, but right next to the elevator. It was also right next to the vending machines. A perfect room for someone with MS.

Jonathan had to work for a few hours that evening, so the kids and I settled in and made the most of it. We watched kids' shows on the TV. We ate vending-machine cookies and drank Sierra Mists, putting extras in the nice-sized fridge provided in the room. At dinner time, I ordered from a pizzeria we'd never eaten from before...and we were pleasantly surprised. The pizza and breadsticks were delicious, and the Ceasar salad I ordered for Jonathan to eat when he returned was surprisingly large for the small price. I am disappointed that there isn't one closer to our home, that we could order delivery from more often.

To wind down the evening, Wren played her Game Boy while Phoenix read the first few chapters of Terry Brooks' "The Elfstones of Shannara," and Eden played on the floor in front of an episode of SpongeBob. I myself brought along my well-read and much-loved copy of Carole Nelson Douglas' "Six of Swords." I pulled a chair up in front of the air conditioner and just enjoyed myself, feeling closer to "normal" than I have in weeks.

It wasn't total bliss, however. When it came time for sleeping (and my much-anticipated Monday viewing of "Hell's Kitchen"; I am a big Gordon Ramsey fan), Eden decided to rebel in a BIG way. At first, she just jumped on the bed she was sharing with her sister. Then she began to throw a huge temper tantrum, screaming and kicking for a good 45 minutes, making me appreciate another quality to that particular room: no neighbor was booked on one side, and the elevator was on the other. She may have been loud, but thankfully, we were the only people who knew it.

No sooner did Eden and Wren finally fall asleep, than did Phoenix had a problem. He'd brought along his sleeping bag, intending to sleep on the floor...but it was too uncomfortable. He tried, the poor thing, but it couldn't be done. I then saw that the girls were only taking up maybe a third of the bed they were in, so Phoenix jumped in and slept at their feet. It was adorable.

When Jonathan returned, we watched TV and ate salads, completely comfortable in the cool room....which, by that time, was far cooler than our house has ever been. He went to sleep easily...sadly, I was not so lucky. The pain I've been struggling with would not let go of me, even in this much-cooler environment. So I stayed up all night, as I have pretty much every night for the past two weeks. Hot damn, am I tired...

The next morning we partook of the free continental breakfast...which was very nice: English muffins, banana-nut muffins, Cheerios for the girls, and fresh fruit.

Shortly afterwards, we hit the pool. My plan had been to go out there with Jonathan and the kids, and if Eden threw a fit, to take her back to the room. I had no plans to be out there for more than a few minutes or to get into the pool...but I discovered yet another bonus to this hotel: early in the morning, half of the pool is completely in the shade! The water was icy cold. I actually got into the pool, the first time I've been able to swim out of doors in probably 7 or 8 years. As for Eden, she LOVED swimming! Completely fearless, that one. She tried to worm out of Jonathan's arms and take off on her own! She didn't want to get out of the pool, but it was time to change clothes and check-out.

I waited in the lobby while Jonathan went to the car and got the air-conditioning going. It was just starting to heat up outside when we left, but it only got to maybe 85 on Tuesday...a big difference from Monday, and absolutely workable in our old house.

I don't know why I was so resistant to this idea for so long. All last summer, people in my support group would tell me about going to a hotel on hotter days, and how much of a difference a day out of the house made. It was such a small thing, and yet, it DID make a huge difference. I felt so much better leaving than I did going in.

I learned a few things from this experience: one, it's not necessary for me to sweat and suffer on very hot days. The hotel we stayed at was very nice and relatively inexpensive...and certainly, VERY inexpensive when compared to the alternative: three days in the hospital for steroids. I need to work on this guilt I have about "wasting" money like that. I always feel guilty if we spend money on me, because we already have to spend so MUCH money on me, that spending any more just bothers me. Jonathan is forever telling me to get over it, and now I know it's in my best interests to listen to him on this.

I also learned what I needed to bring next time, for there will be a next time (we've decided that any day that is over a certain degree will be a Hotel Day). I needed to bring better food and drinks for me and the kids, now that I know there is a fridge there. That's not to say I won't let them indulge in the candy machine; that's part of the fun. I'm also looking into a local delivery service that delivers food from various restaurants to hotels and the like. The idea of being in the hotel and munching on some good Chinese food appeals to me. I also need to bring more toys and so on for the kids, as they did get a little bored. I'm also looking into cooling clothing, because I didn't really realize how staying in the house all the time because of the heat was making me so depressed. A swimsuit for myself will also be in my bag next time (wearing a wet bra is no fun). I really loved swimming; I felt so much lighter in the water, and it was so much easier to move. And finally, we will definately bring some water-wings and swim toys next time! Especially for Fearless Eden.

I guess the lesson in this little experiment was this: it's ok to do things like this for myself. It makes me healthier and everyone in the family happier. It's a win-win situation.

Heat be damned, I WILL NOT be trapped in my house this summer! I will go to hotels. I will swim. I will buy cooling clothing and enjoy myself. And I will NOT feel guilty about it.

Every cloud has a silver lining, they say. I'm learning now that every sunbeam has one, too....

My Life With Secondary-Progressive MS: Sick and Tired....

....of being sick and tired.

As usual, summer has hit and I am struck by the MonSter. It is different this time, though. I didn't think it would be. I thought when my MS morphed to secondary-progressive it basically meant no more relapses and a steady progression of the disease. I didn't realize how much worse it was going to be. The lack of information on this is very depressing. There's a plethora of websites, books and other resources on R&R MS. But for SP? I'm finding very little. Literally, a paragraph or two. There's GOT to be more to it than that...and I think I'm beginning to realize that there IS more to it than that.

I am so very, very tired. The kind of tired where your muscles ache and burn and you can feel it in your bones. It reminds me of the time when I, in a moment of pure madness, decided to walk the bike trail from Xenia to Yellow Springs in Ohio. All while pushing my son in his baby stroller! When I finally got to the cafe, I felt like I had been walking for years. And that's what this feels like: like I've been walking for years. Like I walked from Xenia to Yellow Springs again, just this morning.

On top of being tired, I am also struck with weakness. My legs wobble when I walk. They shake, visibly. The entire leg, not just the calf like I am used to, but all the way up to my thigh. I feel like I'm auditioning for an Elvis tribute band every time I try to walk down the stairs. And walking up the stairs? It's taking forever. I feel as if I am literally pulling myself up by the banister. I find myself avoiding the stairs whenever possible. When I DO climb up the stairs, it takes several minutes for me to feel "normal" again. Climbing the stairs in your own home should not be this taxing on a person's strength...and yet, it is.

The weakness in my legs is also making it very hard to walk in general. The canes I bought for "occassional use" two years ago have now become everyday necessities. I can't even recall the last time I left the house without one. I can barely walk IN the house without one, most days.

The weakness isn't just in my legs, either. My arms, my hands, are also affected. Signing my name has suddenly become a Herculean test of strength. Brushing my hair makes my arms burn as if I've been practicing for a weight-lifting contest instead of just trying to make my hair look like it isn't the result of my putting a wet finger in a light socket. I no longer trust myself to carry hot food from the kitchen to the table (especially after the infamous Chicken Soup Burn Incident). I drop things constantly, and when I visit my goddaughter, I prefer to be seated when holding her. I've never dropped a baby in my life...and I'd like to keep it that way.

I am also finding that minor problems I have had for years are becoming major problems. I'm in the bathroom constantly (I've yet to respond well to a medication to control that). My muscle spasms have gotten so much worse that I've gone from taking one Baclofen a day (as I have for at least four years now) to taking three or four. The nerve pain and sensations are so much worse; the worst they've been since my awful trial on Neurontin (a long story for another day). Trying to fall asleep at night has become a little bit like waging war on my own body: will the pins-and-needles stop? Will the nerve sensations go away? Will my muscles start spasming as soon as I finally drift off to sleep? How many times will I wake up in pain, or needing to go to the bathroom...so I can do the whole rigamorale over again?

This is not like the R&R MS. It's like R&R MS, intensified.

All in all, I feel very much like an invalid lately...and that's something I am not used to. I am sleeping more and getting less out of it. The slightest bit of excertion leaving me in pain and reeling from fatigue.

I just have to wonder: am I feeling like this because it's summer and the MS is spanking me like a bitch, or am I feeling like this because this is what secondary-progressive feels like?

I wish I knew. I keep looking for the answers, and no one will tell me. The lack of information on secondary-progressive MS is astonishing. When I do a websearch, I get plenty of definitions on what it IS, but no real, useful information as to what I can expect or how to cope with it. Each site just keeps regurgitating the same story over and over: the percentage of people who get it, and it's a "progression with less or no relapses." Yeah, I get that. But what does that MEAN in my day-to-day life? On most sites, the only mention of it at all is in a breakdown of the various forms of multiple sclerosis. I know all of that already...what I don't know is: is how I am feeling normal? Is this what I need to expect? How do I know when it ISN'T normal? I keep hearing about going to the hospital for steriod treatments when it "gets too bad." Well, how do I know when it's "too bad"? What are the signs of needing to go into the hospital? What happens if I should have already gone, but I didn't know?

Let's take this one MS site, for example. This is the extent of the information they have on secondary-progressive MS:

Secondary-progressive MS
Without treatment, Secondary-progressive MS, formerly called chronic progressive MS, develops within 10 years in about 50% of people who have had relapsing-remitting MS.

Some people with secondary-progressive MS have relapses, but many do not. In time, people with this condition experience a gradual and continuous increase in symptoms and disability.

Fifteen years after being diagnosed with Secondary-progressive MS, some people may require walking aids, such as a cane, and others may need use of a wheelchair.


This is typical of the information on the Web concerning secondary-progressive MS. How exactly does this information help me? The first paragraph is just statistics, meaningless when you've already been diagnosed with SP. The second paragraph is too vague to be of much use. And the third? I was ALREADY walking with a cane when I was diagnosed with SP! What does that mean for me?

That's basically what I'm finding online, folks. Statistics and vague definitions. And the stastics change from site to site, rendering them pretty much useless.

And so I turn to my support groups. These are usually incredible fonts of information: first-hand accounts of what it feels like to have MS and what may or may not help. I have learned so much from my groups over the years; they have been truly invaluable.

But now I find, that like the Internet, they have little to offer me in the way of practical information and advice. The vast majority of people in the groups have R&R MS. In most of my groups, I am the only person with secondary-progressive. If there ARE others in the groups with SP, they are choosing to remain silent about it for whatever reason...I post and I post, asking for info, and getting nothing. I'm not ignored. People respond, but it's with "sorry, I don't have the answers, I wish I did."

It's frustrating. I feel like I am running in the dark. I don't know where I am going and I'm not sure what direction to run in.

People who don't have MS are now advising me, "Ask your doctor." They mean well, and I politely thank them for their input. But honestly, do they think I've never thought of that on my own? That I haven't tried just that? Doctors are more vague than that website! I get the same "each case is different, so it's hard to tell how yours will progress" lecture I've been getting since I had R&R MS. Occassionally, a doctor will direct me to an MS website...which, as we know, tells me little to nothing. Or they'll hand me a pamphlet, which has the same info the website has.

So what now? I plan to go to Powell's soon and look for books. Maybe someone's written about this form of the disease, and that will help me. I'm thinking that looking at online bookstores for possible titles and so on wouldn't hurt, either. I just refuse to believe that there isn't some practical information, somewhere. Depending on where you get your statistics, anywhere from 25 to 50 percent of people with R&R MS will get SP. Surely, SOMEONE has written about it?

I hope so, earnestly. I hate running in the dark.

Sleepytime

I have been up pretty much all night, every night, for about two weeks now. The pain is so bad, so relentless, I cannot sleep. By the time it lets up enough for me to try, I'm left with maybe, MAYBE three hours to sleep.

I am not a happy camper about this.

I like to sleep. Love it, in fact. I get this from my mother's side of the family. My grandmother so hated to be woken up for any reason that the family would draw straws to determine who had the "honors" on any given day. The procedure for this? Opening the door slowly, extending a broom stick into the room, poking my grandmother softly with said broom stick, and then slamming the door and running like hell. You see, Granny would pick up whatever was handy and throw it at the offender. Her cane, books, water carafe, you name it, it's been chucked at the door. She was legally blind, so you'd think her aim would be bad....but no. She'd had years to perfect the art of flinging miscenellania at the bedroom door. If it had been an Olympic sport, she'd have brought home the gold, every time.

My mother was much like Granny. Trying to wake her up would usually only result in an earful of language that would have made a sailor flinch. After which, she'd fall back asleep almost instantly. And a nap was to NEVER be interupted, unless someone was bleeding or the house was on fire. My mother was an old hippie and not a stickler for rules by anyone's measure, but the "mom is asleep, leave her alone" rule was one on which she would not waver in the slightest.

This is not to say that my dad's side of the family did not have their annoying sleeping rituals. My father and former stepmonster snored so loudly you'd have thought the foundation of the house would shake apart from it. And for some reason, they absolutely would not sleep without the tv on. They would wake up from a deep sleep if it was even turned down a tad, or if the channel was changed. And though they slept with the noise of the television and the noise of one another's chainsaw snoring....my father absolutely insisted on QUIET in the house when he was asleep, and was easily roused from sleep (and roused to anger) from too much noise. I remember being on a vacation with my father, all of staying in this quaint log cabin in the woods in Tennessee. My father actually went outside and yelled at the crickets to shut up so he could sleep....and amazingly, they did. For a short while, anyway. My younger sister was nicnamed "Butt-Butt" for years, thanks to her penchant for sleeping on her stomach and knees with her posterior sticking straight up in the air. But perhaps the weirdest of all was my brother, who insisted on sleeping with a fan on his face all night, every night...even in the dead of winter.

Probably the strangest sleep ritual I've ever personally witnessed was that of an ex-boyfriend, whom I will refer to as "Craig." Craig and I had an unusual relationship, and it started out in a bizarre way. I was living temporarily (for the summer) at a punk house occupied by my best female friend at the time, "Kasey" and her boyfriend, "Quinton." I had a job babysitting for my older brother's kids during the day, and many times it left me absolutely exhausted. One night, I had crashed out on the sofa and was literally sleeping through a party Kasey and Quinton was holding for some reason or other. I was sleeping blissfully when a strange guy poked me in the ribs until I woke up. "What do you want?" I growled out (shades of my mom & grandmom at work there). "Do you have a boyfriend?" he asked me. I replied that no, I did not. "Now you do!" he said happily, and wandered off. I assumed he was drunk and went back to sleep without another thought for the stranger. In all likelyhood, I assumed, he'd forget all about me tomorrow.

I was wrong. Not only did he remember me, but he took his offer--and my silence as acceptance of said offer--in all seriousness. I woke up to find out that although I'd gone to sleep boyfriendless, I woke up with not only a boyfriend but a date with said boyfriend for that evening! I didn't know whether or not this guy was a desperate loony, a hopeless romantic or a flake. In any event, I had nothing better to do, so I went on the date. From that day til the end of summer, Craig and I were an item.

Now, Craig and I dated at a time when I was not sexually active. He knew this, and was fine to wait. He had a reputation at the time of being something of a relentless horndog, but my experience with him was that he was a total gentleman. And he had plenty of chances to be relentless had he chosen to be so: you see, Craig and I used to sleep together.

And when I say "sleep together," I do actually mean "sleep." We often slept in the same bed, both at my place and at his. And believe it or not, sleeping was all that we did. Well, we might have fooled around a bit...but there was no sex. Honest.

It was from this arrangement that I was able to witness his excessive sleeping ritual. Every night, no matter where he happened to be at the time, he would take an hour or so to completely blacken the room. Not a single shred of light could be permitted to shine where he intended to have his fourty winks. He would safety-pin curtains together, roll up towels and stick them under the doorstops, tape dark paper onto the digital displays of alarm clocks and put heavy blankets up over the tops of windows where a small streak of moonlight might somehow penetrate the curtains and interfere with Craig's precious slumber. He would even lie down on the bed and check the room from every angle to be certain that a careless midnight rolling-over would not subject him to anything other than total darkness. It was like sleeping next to the vampire Lestat.

Now that I am married, I often hear stories from people I know or via places like "Dear Abby" about couples with incompatible sleeping rituals or habits: one snores, or hogs the blankets, or has bad nightmares nearly every evening. One insists it remain very warm while the other would prefer a chillier atmosphere. One wants to cuddle during sleep, and the other wants to left alone.

In that, I suppose my husband and I are normal: we have some sleep issues, but none drastic enough to want to send the other to sleep in the guest room permanently. We both snore, and I prefer the room to be cold while he'd like it to be warm, and we both would rather not cuddle all night long. He is a notorious comforter hog, and I am a notorious pillow hog. He likes to hit the snooze button a dozen times or so every morning, and it drives me nuts. But like I said, we don't seem to be much different than most other couples.

The only real difference is my sleep problems, which I work to make as inconvienant on my husband as humanly possible.

Let me describe what sleeping is like for a person like me, with MS and trigmenial neuralgia.

First, sleep doesn't always come. Insomnia is common, almost routine. The fact that the fatigue is awful all day and I'm exhausted beyond words doesn't seem to have any effect on the insomnia. Not to mention the fact that there are actually two kinds of insomnia I suffer through: lack of sleep due to the pain, and lack of sleep due to MS. Of the two, I prefer the latter. I tend to get stuff done when it's the MS to blame: I do a little laundry, some dishes, work on some homeschooling stuff for the kids, work on my book. When it's the pain, I can do little to nothing. I can play solitaire on the computer. I can read a little. I can blog.

Even when insomnia isn't an issue, sleep does not come easy. Every night, when I lay down to sleep, what we in the MS community refer to as the "pins and needles sensation" starts up. It literally feels like someone is jabbing me with little needles, up and down my legs. Sort of like having them "fall asleep," but different somehow. I also get the restless leg syndrome, which is hard to describe. It's basically what it sounds like: your legs are restless. Which leaves you restless, too.

These symptoms usually last anywhere from 20 mintues to an hour before I can finally fall asleep. After that, three big symptoms keep me from staying asleep: neurogenic bladder, muscle spasms and unexpected neuralgia pain.

The neurogenic bladder means I have to go to the bathroom...a lot, and with great urgency. I haven't responded well (or at all) to the medications currently on the market for it. I basically get up to go to the bathroom, on the average, every hour to hour and a half. Then I crawl back into bed, and the pins and needles/restless leg starts up all over again, and I have to go through the whole rigamorale until I can finally, once again, fall asleep....until the next time I have to go to the bathroom.

The next thing that wakes me up is, thankfully, much more rare: the muscle spasms. Imagine having 100 charley horses in your leg, all at the same time, waking you up from a deep sleep. That's what it's like. On a bad night, I might wake up from spasms two or three times. And then (you guessed it) I have to sit through the rigamorale yet again before I can finally fall asleep.

The unexpected neuralgia pain is pretty much what it sounds like. It means I go to bed in little or no pain, but something happens in the night which brings on a bad attack of it. This can be something as little as simply rolling over too hard on my side and having my face hit the pillow just a smidgen too forcefully. Or it can have no cause that I can determine. In any event, once this happens, I can't fall back to sleep until the pain is over. I must either wait it out (if it happens to be my lucky night and the pain is short-lived) or take medications and wait for them to kick in. Either way, you're looking at anywhere from 20 mintues to an hour or more. And even then....you guessed it! The rigamorale must be suffered through before sleep can commence.

So as you can imagine, I don't get a lot of sleep...and what sleep I do get, is rarely very restful. It is usually sleep that will send me to the ER for a shot: if I've gone too long without any appreciable sleep, I can't fight the pain. I get a shot, the pain comes down to a tolerable level (it never really goes any entirely anymore) and I can get enough sleep to combat the pain when it returns. It's really the best I can hope for these days.

For now, it's almost four in the morning, and I'm no closer to sleep than I was at midnight. Que sera, sera.

Nite-Owl

Yep, that's me.

I am barely sleeping lately, so much is the pain. I have my doctor's appointment this afternoon, so hopefully something will be resolved. I certainly can't go on this way. I'm exhausted. Whenever I am alone, I cry (and I'm not much of a crier). I have this weird headache in the front of my forehead, which I'm pretty sure is related to the sleep deprivation. I don't have the energy to do much of anything.

I can't adequetly describe the utter exhaustion of not sleeping from pain and then taking medications that make you drowsy. It's a one-two punch, and I've been TKO'd.

Pray for me, ZPT fans...

An Update

Still in pain, still getting little sleep, little food and little relief.

To top matters off, my doctor's office insists I can't be seen before Tuesday. I am beginning to feel like I'm getting the run-around here....


I've decided that a number of things need to be done:

1) I made a complaint with the hospital about the incident on Sunday. Maybe THEY can figure out just what happened and why I was not treated. I also need to make a complaint against Dr. Otherwise. SOMETHING happened Sunday, and I suffered needlessly as a result. This CAN'T be allowed to happen again....and with Dr. Otherwise telling me one story and the P.A. telling me another, making complaints might be the only way to sort out this mess.

2) I need to either get more medication per month or better medication. I've been looking into transdermal patches, after reading an article in a recent issue of the Trigeminal Association newsletter. If I had some of those, I wouldn't need to go to the ER as much or (hopefully) at all.

3) I need to have, in writing, exactly WHEN I am to go to the ER, WHAT I am supposed to do both prior to going and once there, and exactly WHAT the ER is directed to do for me in the event that I am examined and deemed in need of pain relief.

4) If my doctor is resistant to any or all of these (and I really hope
she's not, as I like her personally and I certainly don't hold Dr. Otherwise's attitude against her), I may have to shop around for a new doctor. A few people in my support group told me they have had better luck in pain management treatment from DO's than they have with MD's. I'm looking into this....


Thanks to everyone for the well-wishes. You'd think with a disease that literally drives people to kill themselves out of pain that doctors and hospitals would WANT to ease said pain....

Another update: the company I wrote the "STOP CALLING ME!" post about called again today. I spoke to a supervisor who again assured me that no more calls would be made to my telephone number. Yeah, right.

Pain, Pain, Go Away...So I Can Have a Clean House!

Yep...I'm in pain again. I apologize for this post being very long, very whiny and very bitchy. Extreme pain does
this to me, and if you skip this post, I'll not blame you one bit. My husband has to listen to me bitch, but you don't.

You know, I thought the trigeminal neuralgia was bad when I only got maybe a dozen or so attacks per year. But this, this every day crap for the last six months...I had no idea how bad it could be.

The latest thorn in my side is lack of sleep. I can FALL asleep, I just can't STAY asleep. I wake up every two to three hours at most...sometimes, I wake up 20 min. to an hour after I fall asleep. This goes on all night.

I'm shaky all over, and have a dull headache, from lack of sleep. I'm so exhausted, all I can think about is sleep: how wonderful it feels to crawl under the covers in my freezing-cold bedroom, snuggle up against my body pillow, and drift off to dreamland...and mostly importantly, STAY there for a good eight hours.

It doesn't help that the pills I take to keep the pain at bay make you incredibly drowsy. I suspect the heat is an issue here as well...heat like this is enough to make anyone sleepy, let alone someone with heat-reactive MS. Another factor is that the pain is so bad these days, I can only sleep flat on my back...probably my least favorite sleep position. Jonathan asked me why this is so the other day...and I wanted to smack him. I have G-cup boobs, for crying out loud. YOU try to sleep with a 20 pound sack of potatoes on your chest, and then we'll talk.

I'm not getting anything accomplished, because I'm just too tired. My kitchen is a disaster area. The laundry pile is large enough to need its own zip code. Jonathan is helping out the best he can, but he's working a lot of overtime because of all the people on vacation. There's only so much he can do.

I have tried, Lord knows I have, to not let the housework get to me. I know that as a person with MS, I have to pick my battles. Sometimes a lot will get done, sometimes a little...and sometimes, nothing. But I just can't get over feeling lazy for not having EVERYTHING done.

This goes back to my father and former stepmonster. My dad is a neat freak. When I was a kid, we could not go to school until our bed was made and the breakfast dishes were done. Dirty rooms were not tolerated. Laundry had to be put away the very second it was done: nothing made him angrier than clothing left in a dryer for even a few minutes. Even on Christmas morning, we couldn't open our presents until the breakfast dishes were washed and the kitchen and dining area clean (talk about torture for a little kid, lol). It was impossible as an adolescent to be discrete about menstration: my father absolutely forbade any sanitary items to be discarded in his home. You could not flush tampons, nor even throw away the wrappers from maxi pads inside the house. Day or night, they had to be taken to the garbage can outside. An unexpected side-effect of my dad's period phobia was that when I went through my teenage rebellious stage, it was very easy to hide weed: I simply took a tampon carefully out of its wrapper and out of the cardboard and put the joints inside. Even though he searched our rooms on a fairly regular basis, he never found them there...a firing squad couldn't force that man to open a box of tampons.

My father often made fun of my mother, who was much more laid back about housecleaning (she once confided in me that it was a rebellion of sorts on her part, after having been married
to Mr. Hospital Corners for ten years). My stepsister-in-law was also a target for namecalling by my dad and stepmonster; now, granted, her house was filthy. But they were downright cruel to her about it.

The real rub in this was that although my stepmonster loudly proclaimed her pride in her clean home, and how very difficult it was to keep it that way...I never in 18 years saw her wash a dish or sweep a floor. I saw her sit on her giant backside and watch a lot of soap operas (what a stereotype in action she was), but run the vacuum? You've got to be kidding. That's what kids were for. And with ten kids in the house, there were more than enough hands to do all the chores. I think I saw her do laundry a few times...when we had company. But other than that...it was all us. Our chore lists were a mile long. And I resented the hell out of it when I was a kid.

Part of our "chores" was caring for my stepsister, "Lori." Lori had very severe cerebral palsy. She couldn't walk, talk or see. She was prone to seizures as well. She was very much like a baby. A baby my stepmonster couldn't be bothered with to care for herself.

Now, once again, whenever we had company, Stepmonster made a big show of feeding and caring for Lori. But it was just a show. Feeding, bathing, dressing, putting to bed and even changing her diapers were all on our chore lists. Basically, we took turns: every day it was someone else's job to "handle" Lori. My younger sister especially grew to resent Lori deeply for this. Now, I could understand resenting Stepmonster for pawning off her kid on us...but Lori was an innocent. But that logic was beyond my younger sister, who just simply hated Lori and couldn't be disuaded otherwise.

Now that I am an adult with a special-needs child of my own...I am really sickened by the fact that Stepmonster had little kids taking care of Lori. If Lori cried, Stepmonster would get irritated and yell for whoever's turn it was to care for Lori to do something about it. She wouldn't actually budge herself. Granted, it must take a lot of effort for someone that fucking fat to move a couple of feet (Stepmonster was easily 450 pounds; she had her stomach stapled three times and burst the staples each time within weeks), but come on. Not to mention the fact that at 10 years old (the youngest age that my parents deemed capable of beginning to "do our share" with Lori), we were absolutely not qualified to care for this child: we were powerless if she started to choke or have a seizure, we could barely lift her to change her diapers, bathe her and carry her to bed...and we certainly had no business giving her medicine (yep...that too was on the chore list). And yet...this continued until my stepsister became so very sick, my father and stepmonster were forced to hire in-home nursing care for her. I think only my youngest brother was living at home at the time.

In their defense: Stepmonster and my father made sure that Lori had the best doctors, the best schools, the best adaptive equipment available. And they made sure everyone who would listen knew about it, too. And while as a kid I had a sneaky suspicion that using young children as aides for a kid with cerebral palsy wasn't the best idea...as an adult, with a disability of my own and a child with disabilities...I am shocked and horrified when I think back on it. Then again, I'm shocked and horrified when I think about a lot of things that happened to me as a kid.

I miss Lori. When my father and stepmonster divorced, she refused to allow Dad to see Lori anymore. And because Lori is officially an adult now, she can do that. Even though when my dad met the fucking bitch, Lori was wearing dish towels for diapers and her life expectancy was six years old, tops. My dad wouldn't take that as an answer, and did everything he could, saw every specialist in the Midwest, to keep Lori healthy and alive. She turns 27 in three days. I do miss her. I love how she would get so happy when she heard my voice, and how much she loved the sound of babies near her. But Stepmonster and I had a falling out, and visits are now out of the question.

What was the falling out over, you ask? Well, I attempted to keep the line of communication open between myself and Stepmonster after the divorce, for Lori's sake. Without Lori in the picture, I would have just written the nasty bitch off completely. To say she made my childhood miserable is an understatement. She is one of those people who never smiles, unless it's at someone else's misfortune. An example: one of her favorite things to do when I was very young was to pretend to befriend me for a short time. She'd take me out to eat, go to the salon and get our nails done, that sort of thing. This would go on for days, until she would get your confidence. She'd tell you that your secrets were safe with her...and then she'd immediately tell my father, often blowing it way out of proportion to make him even angrier. A regular Linda Tripp. What's worse, if you didn't tell her anything she could use...she'd just make something up. Linda Tripp meets Dan Rather, I guess.

Anyway, believe it or not, this vicious cuntbug is a registered nurse. God help her victims, I mean, patients. She's the kind of evil skank who would put IV's in the most painful spots just to watch you suffer. Getting back to the point: about four or five months after the breakup, she calls me in the middle of the night from the hospital she works at, telling me my elderly maternal grandfather (he'll be 96 at the end of this month) is there and not expected to survive. I should get on a plane ASAP, she tells me. Grandpa is dying.

Horrified, I call my grandfather's only living child, my aunt "Betsy." She is none too happy to be awakened so late...especially as Grandpa is most certainly NOT dying. A part in his pacemaker was recalled, and because of his age the doctor felt it was best for him to spend the night after having it replaced. He was scheduled to be released in the morning. Have no fear, Betsy assured me: she'd have called if it were anything serious.

I was LIVID with Stepmonster. How dare she put me through that, so soon after losing my mother! What kind of sick beast does that to people?!?

The corpulent douchebag called me back an hour after I had first spoken to her, and about a half-hour after I'd hung up with Betsy. She actually wanted to know what time my flight was coming in, as she'd be more than happy to pick me up at the airport and drive me to my grandfather's "deathbed."

I let her have it, and for the first time in my life, I really let the creep know how I felt about her and her twisted fucking mindgames. I'd argued with her before, but nothing like this. I was pissed beyond reason, and said some things you can't really go back on. She said some things to me in the same vein.

And thus...she won't let me see Lori. I don't even know if Lori is alive or not...she was pretty close to the end the last time I saw her, which was six or so years ago.

The last I heard about Stepmonster from the rumor mill, she was wanting to reconcile with Dad. But Dad would have none of it. Which thrills me to no end. I can take these Internet hoes...but Stepmonster? No thanks.

So to get back to the original point...thanks to Dad and Stepmonster, I feel incredibly lazy if my house isn't Donna Reed clean. I know its silly, I do. And I try to tell myself that I have MS and trigeminal neuralgia. I have three kids: one with special needs and one a toddler, not to mention a preteen who has to be cojoled into doing chores when he'd rather be skateboarding. I keep saying to myself, no one expects your house to be spik-and-span. The fact that you can still see the floor in the kids' rooms should be comfort enough.

I used to really drive Jonathan crazy by doing housework when I was not in the shape to do it, and thus, making myself sicker. He'd beg, threaten and bribe me to NOT clean the house. And I've finally gotten to the point where I am listening. If I'm sick, I won't risk my health because I want the rugs shampooed. It's not worth it.

But I can't get over the little voice in my head, my Dad's voice, teasing me for being lazy, for being dirty, for living in a pig sty. I'm working on it. Like my house, I'm a work in progress.

One of the things that has helped is a little poem I've put up on my kitchen wall, that I'd like to share with y'all now, and I'll quit my whining for one night:


WELCOME!

Come on in, but don't expect to find
the dishes done, the floors ashine
we've crumpled rugs & toys galore
cluttering the yard & living room floor
the little ones we shelter here
don't thrive on a spotless atmosphere
they're more inclined to disarray
with carefree, even mess play
some future day, they'll fly the nest
and we'll have time to tackle the mess
but until then, what matters more
happy children, or a polished floor?

Checking In

Sorry I haven't been posting much lately...life has been catching up to me. So I thought I would drop a few lines here to discuss what's been going on in the real-life world of Zen Angel.

On Saturday, my best friend Fizz and his boyfriend stopped by and we hung out for several hours. We had a fantastic time. Fizz gave me the cast recording for "Spamalot" as a gift (is it any wonder I love this guy?). It was the first time I had seen Fizz in person in nearly a year, and the first time I'd ever really spent any time with the boyfriend, "M." M is, to my surprise, a really nice guy. After they left, I just marvelled at how much I enjoyed his company. I really think he's "the one." They just seem so...compatible. It didn't hurt that my kids liked him, too...or that he brought me a daisy. All in all, a great night. I need to stop being such an hermit. Having a social life again would do me some good, methinks.

Yesterday, Eden had another outbreak of allergic purpura. I've written about that here before: it's a rare condition that makes her break out in a rash that looks like little round bruises on her feet, legs and back. It also makes her run a fever and get tired and cranky. I've basically spent the better part of the past two days nursing her and comforting her. Tonight, it looked as if most of them are fading, but I'm going to call and check in with our pediatrician anyway. Allergic purpura is usually not serious, but it can lead to kidney failure, so you have to keep an eye on it. This is the third or fourth time she's had an outbreak. Recurrances are very common, although most kids grow out of it by the time they are five or six. This has been the most mild outbreak yet, but I still hate to see her so miserable. Not to mention the fact that all this constant nursing has just wiped me out completely. I feel like a dish rag that has been rung out one too many times.

Tonight is the fourth of July, of course, and we are doing: nothing. Wren is still deathly frightened of fireworks. Even sparklers are totally outside of her comfort zone. And the baby is sick, so we're homebound. You can see the fireworks from my neighborhood, anyway, should we feel so inclined. Hopefully, the Redneck Asshole Neighbors across the street won't be setting them off until daybreak again this year. It makes the next door neighbor's dog freak out and bark like mad, and the noise from the fireworks, redneck party and dog is a bit more than I want to deal with right now. Yee haw.

Health-wise, I'm feeling the effects of the heat of summer. The MS-related fatigue, which I haven't had much of since becoming pregnant with Eden, seems to be back. I feel as if a giant weight were crushing me down. I literally have zero energy. I wonder how much of that is a consequence of all the nursing, though. It's probably a combination of the two: the heat and the constant breastfeeding. In any event, I'm not up to much right now. At least the pain is at a bearable level. I haven't taken anything stronger than prescription-strength Ibuprofen since Saturday (hurray!).

Hopefully, I'll be back to more regular posting here (and on BAD BABY NAMES) soon. Until then, happy 4th, everyone.