Wednesday, August 30, 2006

MS - the Stealth Illness

If I had a dollar for every time someone met me and said "Wow! You don't LOOK sick!", I could probably afford to buy that Prius I've been lusting after.

That's the thing about MS - most of the time, I don't look sick. I might feel like crap, like I've been run over by several trucks, but to the casual observers, I look okay (maybe not great, but definitely not sick).

Here's the thing. I'm in pain all of the time. There isn't a moment in the day when I'm pain-free. Most of the time, the pain is minimal, kind of like physical white-noise. I know it's there, but it doesn't really stop me from doing stuff. Other times, like today, the deep ache in my arms and legs insists on being noticed, not ignored. On days like today, any plans I might have made (like driving to the library to pick up a book on hold) get flushed right down the toilet, because I'm too tired to risk driving the mile or so without risking an accident. On days like today, getting out of bed and throwing on a shirt and a pair of leggings is about all I can manage without needing to crawl back into bed.

Unless you've lived with constant, relentless pain, you can't begin to imagine how exhausting it can be. Even if the pain is the 'white noise' version, it drains away some of my precious energy reserves, which means I start every day with a kind of deficit that just can't be replenished. Even with the medication I take to counter MS fatigue, there are days when the pain wears me down so damned much I can't even unload the dishwasher, much less drive to the supermarket and carry bags of food into the house. Even those ridiculously simple, easy tasks feel like climbing Everest on days like today. So I know I'll end up in bed, propped up on pillows, trying to read a mystery or watch a DVD, but more than likely just sleeping, trying to recharge my energy-batteries enough that I can do something - anything - tomorrow or the day after.

And, of course, I HATE feeling like such a whiner, complaining and bitching all the time about how tired I am or how lousy I feel. I mean, I bore myself when I feel this way - I can only imagine how boring it is to everyone around me. Gack...

So once I've posted this wee rant, I'll find the pillow-armchair thingie that I bought when the first exacerbation smacked me around, grab a couple of books and DVD's, fill my water bottle with cold water, and crawl into bed for the rest of the day.

I guess I should be grateful to have a comfortable bed in a cool, quiet bedroom where I can rest as long as I need to, and most of the time, I am grateful, very grateful. But today, I'm pissed off and tired of being sick, tired of being in pain.

And if anyone told me that I don't "look sick" today, I swear I'd bonk them with my cane.

Wednesday, August 16, 2006

A footnote from the rabbit hole

I hate sounding so whiny and self-pitying, and I know that's how the last post must sound. But you know - this disease SUCKS, and sometimes it's hard to be all brave and appreciative of all the abundance and good stuff in my life. Sometimes, I just want to SCREAM and say that things suck.

Down The Rabbit Hole

Aside from the physical manifestations of MS (which are, believe me, bad enough on their own), the hardest thing for me to deal with has been the lack of predictability in my life.

For decades, I lived in what seemed like a fairly predictable universe. When I was in grade school and high school, the weeks were formed by classes and after-school activities and the weekends, by the stuff my parents planned for me. In retrospect, I realize how safe things seemed (although I wasn't at all aware of that back then), how normal life was. Stuff happened, of course, stuff like childhood illnesses or snowstorms that messed up the normal ebb and flow of life's movements, but nothing ever shook the rock-solid foundation of my life (other than stuff I initiated, like the 'sex and drugs and rock-n-roll' of life in the 60's).

And then I went to college, dropped out for a few years and started working in office jobs, again sequestered in the safety of class schedules or work schedules, always knowing where I had to be and pretty much what I had to do when I got there. Best of all, I had the energy to accomplish all of it (and lots more outside of work/school) or to change things if I felt like doing that.

See, for a long, long time, if I made up my mind to DO something, I usually found a way to make it happen. I left college, worked, went back and graduated with high honors. I got married and divorced, moved to Boston and got married again. I changed jobs a lot, landing in a slightly better situation, with slightly higher pay every time. We moved from one apartment to another, bought a house, had a baby (who is now a spectacular and gorgeous young man) and continued with our careers. We moved back to the Delaware Valley (which I hated) and I managed to find a job and move to the San Francisco Bay Area, a place I'd fallen in love with while on a business trip.

Oh right. Business travel.

I was terrified of flying on airplanes, so I took a job that required a ton of travel to try and overcome that fear. I went to Dallas and San Francisco, Los Angeles and Denver, meeting cool people and seeing parts of the country I'd only read about up until then. The next job had me traveling to Austin, TX and to Raleigh, NC, as well as to New Hampshire and Maine (easier trips, of course, but still ...). And then I landed a job that included travel to Europe and Asia, and I flew to Shanghai by myself and spent a week at a manufacturing plant working with a team of Chinese managers to design leadership training programs. I was scared to death when I began that trip (flying from the east coast to Detroit to Narita Airport in Japan to Shangai and back again), but damn! it felt good to know I'd somehow managed to pull it off, pushing through my fear to make it happen.

The ability to face and fight through my fears to get where I wanted to go was, in retrospect, a defining factor in my life. If I wanted to do something, dammit, I figured out how to make it happen!

Now? It is to laugh (bitterly). I can't do much of anything for long stretches of time before my pathetic, damaged nervous system stops working. I can't weed in the garden for more than a half hour before my legs get too wobbly to be trusted (I stumble/fall frequently, on soft grass, thankfully). I can't make a date to meet someone for lunch because I might be too tired to drive home afterwards. I can't schedule two things in one morning (like exercising and weeding), because my body can't manage too many demands before it either shuts down or starts doing bizarre stuff. I can't function more than four or five hours in the morning before I MUST sleep (and I used to wake at 6:00, get myself and my son ready for work/day care, work a very full day, get home and do all the dinner and bedtime stuff, work some more, go to sleep at 11:00, and be up the next morning to start again).

And dammit, I WANT to do more. I WANT to be more productive, more active, more interesting. I want to experience more of what Portland has to offer -- but I can't manage it.

It's as if my life has suddenly turned into a kind of pain-ridden version of Alice In Wonderland, where nothing is quite as it used to be and everything is unpredictable.

Except I have two cats as companions and no White Rabbits. And when I wake up, I'm still down the rabbit hole.

Monday, August 14, 2006

So what's MS, anyway?

I have no idea if anyone reads this blog (but hell, I'm old enough to be talking to myself much of the time, right?) or if the folks who read it already know more than they want to know about Multiple Sclerosis, but just in case...

MS is an incurable disease of the Central Nervous System (CNS), as in the brain and spinal cord. No one really knows what causes MS (there are lots of theories, but none have been proven conclusively); as a result, no one has been able to find a cure for the disease. There are lots of treatments, though, ranging from steroids (can I tell you how much I HATE steroids?) to stop an 'exacerbation', to five different injections that slow the progression of the disease, to dozens of meds that treat the wide range of symptoms that accompany the disease. I opted for doing nothing (other than covering my ears and saying "La, la, la") for over a decade after I was diagnosed, and then I had my own little "exacerbation" in the spring of 2001, at which point I was ready to try ANYTHING to feel just a little bit better.

An "exacerbation" (or flare-up or relapse) describes a period of time when one's symptoms get worse (I have what's called 'relapsing/remitting' MS, which means that I experience periods of time when things get worse and then the symptoms abate to one degree or another). No one can predict when a flare-up will occur, or when the symptoms will abate. Hell, no one can predict much of anything about this disease; it's a little like having your life turned into a weird, sick horror movie, where every door might lead into a room filled with monsters and pain.

So in April, 2001, I turned into a kind of walking test tube, taking meds morning and night, and getting stuck with a 1 1/4" needle once a week, in the hope that this experience might spare me continued major damage to my CNS. The thing is, I have no idea whether this medication is helping or not, since many people with MS will experience a flare-up, go into remission, and stay there for a long time -- without the benefit of an obscenely expensive medication that requires having a needle stuck into a muscle once a week. Is the medication working? Beats the hell out of me, but I'm not enough of a gambler (given how few chips I have left these days) to stop taking it, so we continue with the once-a-week shot.

Anyway, back to MS...

Nerves are covered with a fatty substance called myelin that helps conduct impulses along the nerves (think of an electrical wire and its coating). When you have MS, this myelin coating is damaged by your very own immune system -- your body attacks the myelin coating as if it were a virus or bacteria, and kills it, very effectively. Once the myelin coating has been damaged, impulses that used to work just fine suddenly don't work right anymore. Symptoms very wildly, depending on the part of the CNS that has been damaged. Some people have optic nerve damage. Others have problems with incontinence. Others (like me) have problems with balance and walking, and (the worst of all, in my experience) unbelievable fatigue.

I'm not talking fatigue as in "Man, I'm really tired. I think I'll take a quick break and then go back to climbing Anapurna." I'm talking fatigue as in "If I don't lie down this instant, I'm going to fall over and not be able to get up." Or as in "Shit. I'm driving 70 miles an hour in the fast lane on 1o1, and I'm suddenly too tired and dizzy to keep my foot on the accelerator. I gotta get off the road - NOW!!"

A friend of mine who has MS describes MS-fatigue as 'like sinking into quicksand'. For me, it's like having a thick, dark curtain descend in my head, one that makes anything other than rest or sleep impossible. Whatever analogy you use, MS fatigue makes any semblence of a 'normal' life almost impossible.

Plans? Calendars? Appointments? It is to laugh!

If nothing else shows how little control we human have over our lives, MS does.

More later...

Saturday, August 12, 2006

All quiet on the home front... least for a little bit.

Our good friends from San Mateo, CA left yesterday, after an all-too-brief visit. Their two sons (age 13 and 11) are wonderful kids (hey, as far as I'm concerned, any 11-year-old who loves sushi and fried calamari is awesome!) and it was great to see them again after so long. The boys were thrilled to be able to sleep in a tent in our back yard (undisturbed by moles or other nocturnal wanderers, apparently), which made it easy to deal with four house guests when we only have one extra bedroom.

David spent both days out and about with them, showing them some of Portland's coolest places, while I, slug that I am, slept/rested/tried to muster some energy so I could be awake when they returned from their adventures. I did as much cooking/entertaining as I could, but ended up needing to sleep a lot more than I would have preferred.

So now the linens on the guest room bed are fresh, as are the towels in the guest bath. Our private, little B&B is quiet, but ready for the next round of guests, expected to arrive some time towards the end of the week or the beginning of next week. I plan to spend a good deal of time between now and then hanging out being even more lazy than usual.

Monday, August 07, 2006

Hitting the MS Fatigue Wall

Well, it happened this morning.

I thought I was resting and not doing too much, but the definition of 'too much' is still something I'm not quite able to grasp, and I hit the Fatigue Wall this morning. So instead of going to the Chinese Garden (a truly gorgeous place in downtown Portland), my son and his girlfriend are sleeping in and I'm trying to rest. With luck, if this damned disease allows, we'll go to the Japanese Garden late this afternoon (another absolutely gorgeous venue), but I'll have to make the trip around the grounds in my wheelchair -- there's no way I can walk, even on one of my so-called 'good days'.

There are times I hate this disease so much I want to scream and throw things.

This is one of those days.

Friday, August 04, 2006


Have you ever had a nosebleed?

My son used to have them, and I remember how terrified he was when he was very young (hell, I wasn't all that calm inside, either). I don't remember having nosebleeds when I was a kid, but I get them from time to time now, mainly when the humidity is very low.

So last night, after a dinner of Hot Lips Pizza (our current local favorite) and salad, we were watching Lewis Black's latest HBO special, when I realized that my nose was bleeding.

Usually, I get a nosebleed and it stops within a minute or so.

This one was different. I couldn't stop the damned bleeding, and I was reminded that my dad used to get nosebleeds, caused by high blood pressure. Once, a doctor told him if he hadn't had the nosebleed, he would have had a stroke. (Eventually, he did have strokes, a lot of small ones, and he ended up in a nursing home, unable to communicate -- a prisoner in his body. May I say now that I am TERRIFIED of ending up like that?)

I don't have high blood pressure. When I was younger (and thinner!), my blood pressure was usually something like 90/70. Even now, when I'm at the doctor's office, it's something like 125/70. But I gotta tell ya: in my mind, a nosebleed is never 'just a nosebleed'. It's a reminder of just how fragile and vulnerable I am -- we all are -- and how possible it is for my life to be turned upside-down (uh, like with Multiple Sclerosis, for example) overnight.

Anyway, David found the chapter on nosebleeds in our Mayo Clinic reference guide, and I managed to stop it quickly when I figured out what to do, but ... the spectre of my dad and his situation has remained with me.

Thursday, August 03, 2006


My son and his girlfriend will arrive in Portland in three hours! I don't see him often, since he goes to college in Minneapolis, and lives with his dad on the east coast, so this visit is a gift. I can't wait to see him, to hear some details about his internship this summer (he's studying Comic Art at the Minneapolis College of Art and Design) and to get to know Emily a little better.

The weather here is predicted to be gorgeous, and I'm hoping we can show them some of the great stuff in and around Portland to lure them back for more visits.