Fatigue reply 2

Sent 1/22/12

Hi, Rachel

The rest of your questions are still waiting for my responses... so here at last are my attempts at answers.

You say: "No other materials on fatigue mentioned the risk to driving" and compare my experience to narcolepsy.

I keep trying to write about Fatigue, but instead I find myself writing long stories about how much I've accomplished in my life in spite of Fatigue... so I'm trying again: What does Fatigue feel like? That should bring me to your answers.

I wake up in the morning. I know it's morning, because the sun is shining, my cat is begging for breakfast, my bladder is calling for relief...

I roll over and hide my face in the pillow.

After a while, I can't deny my bladder's call, so I get out of bed and hold myself with one hand (important precaution - I've wet my nightgown on the way to the bathroom more than once), while I hold on to the walls and furniture with the other. As I pass the clock, I note the time. 7:30 AM? 11 AM? How many hours did I spend in bed? (The question isn't "did I sleep" - my sleep is erratic, which adds to the Fatigue problem.) It's mostly idle curiosity - I'm rarely ready to start the day when I wake up, however long I've slept - but if it's 11 AM, I might find myself more nearly rested, while if it's 11 and I know I have to leave the house by 12:30, I have to take drastic measures.

After the bathroom, I'm ready for the morning ritual:
- set the tea kettle (which I filled last night) to boil; put the tea-bag in the teapot
- open the curtains to light the house-plants
- feed the cat (at last!)
- fill the birdfeeder
By now the kettle is boiling, so I fill the pot. Time to save steps to save energy: The oatmeal & sugar are on the counter between the stove & the microwave, below the bowl shelf and above the cutlery drawer, and the measuring scoop is in the oatmeal bin. Sitting at the counter, I scoop oatmeal into a bowl, measure sugar into the teapot, & then slide along the counter to the fridge, where I can get lemon for the tea and milk for the oatmeal... and so the breakfast ritual goes: all automatic, no mind required. Gradually, with tea, the mind-fuzz clarifies enough that I can think about what's scheduled for today:
- perhaps it's the cleaner's day & they'll arrive any time between 10 and noon - do I have time to do my morning stretches before they arrive?
- and/or... Meeting on-site at 1 PM - will I be awake enough to drive there by 12:30? Will I have time/mindfulness to prepare?
- or... Two - no, three voice lessons today: 12:45-1:45, 2-3, 7:30-8:30... Am I awake enough to vocalize now so I can give examples? Will I have time/energy to get my on-line work done in between?
- or... work projects have been coming due; am I ready yet to log on to "virtual work" and work a long day?
- or... other mid-day, away-from-home, time-sensitive projects; things I must do by a specific date, if I can get it together; things I just want to do some time soon... what gets done today? What gets put on hold?

In any case, after breakfast come morning stretches plus morning prayers: it's a soothing habit, as close as I get these days to yoga. Sometimes I finish feeling ready for the day; sometimes the mild work-out (including leg-lifts, push-ups and a couple of other weight-bearing activities) is enough to send me back to bed for a couple of hours... in any case, it's worth doing, so it stays in the morning ritual.

Then there are frantic days: I like to go to Sabbath services on Saturday at 10 AM. (I can go to Friday night or Saturday AM; I don't have the stamina for both, and although I hate mornings, I prefer the morning service - so I don't do my AM stretches on Shabbat.) But it snowed this Saturday! My wonderful neighbors usually shovel for me, but it's Saturday - I guess they assume I'm sleeping in - so I try to shovel, hoping to have enough energy left after for services. What a hope! By the time Reynaud's has numbed my fingers, I know it's time to give up. I drag my stiff, over-used legs to the bedroom, lie down flat... and stay there for most of the rest of the day.

Fatigue is worse if I overuse something that's already limited in function. When I was being diagnosed, they ran an "evoked potentials" test, and told me there were problems with my legs and eyes. Sure enough: as my MS ripens, leg and eye problems have grown. I can walk, I can stand... but I pay with fatigue that leaves me flat on my back and brain-dead for hours. As for my eyes... thank G-d for computers, where I can enlarge text! I used to be a real print-junkie, the sort who'd read every word in the blurb on the cereal box... but now, between life-long myopia, age-based presbyopia (I'm 60) and MS-based diplopia, reading has become an exhausting process of covering one eye (to see only one image), and choosing between wearing reading glasses over my distance glasses, or taking off both glasses and squinting. (I asked my ophthalmologist for help, and she laughed and told me "Thousands of people would *die* to be able to read as well as you do!"... I'm looking for a new eye doctor... but I don't have much hope.)

A work problem: My team has decided to join an on-line class to learn a useful program. The problem? - the on-line course comes with a real book that we have to read in order to take part in the on-line course-work. This used to be my life! - but now, going back and forth between a tiny font in a badly-designed book and on-line, resizeable text is exhausting.

Other exhausting activities:
Longwood Opera in Needham, MA holds concerts every Tuesday night in the summer. I've been the Gilbert & Sullivan concert organizer for years. I know G&S and singers; all I need to do is gather singers from the company roster, suggest suitable music & put it into a nice order, get them together with the accompanist for one rehearsal, prepare one song for myself, and have fun on concert night.

But one Sunday a few years ago I barely woke up in time to drive down to Needham for the mid-afternoon rehearsal. I was there for maybe 2 hours, interacting with singers (which calls for keeping one's eyes open and remembering things, like names and who's-singing-what), standing and walking on those easily-tired legs... By the time I could leave, I really wished I were in bed with my eyes shut and my mind at rest.

That's the first time I almost fell asleep behind the wheel: I had tired already-limited nerve sets. My legs wanted to lie still; my eyes wanted to close, my cognitive system wanted to rest. I thought it was a one-time problem, and drove to Needham a month later to take part in a G&S audience sing-along... and again, was too tired to feel safe driving home. So ever since, if I have to go to Needham or anyplace else that involves driving on a highway for 1/2 hr or more, I arrange for a ride.

I'm worried now about my job: I have on-site (1/2 hr away) meetings once or twice a month. When it's just me and my supervisor for an hour, I know that I'll have to lie down when I get home, but I'll be able to get going after an hour or so of rest. But a few months ago I attended a quarterly all-staff meeting involving a couple of hours of talks by colleagues... and I almost fell asleep listening. Worse: I headed home, was distracted and responded slowly - and rear-ended a stopped car. The other driver didn't see any problem and drove off without leaving his name; I eventually found I had $2000 damage to my own car. I'm lucky nobody was hurt: a friend with health problems and a lot going on in his life rear-ended a truck a few weeks ago. He's dead.

I'm called for another long meeting this Friday. Thank goodness a colleague will be driving me! But do I feel safe about other meetings?

That's how Fatigue can cause falling-asleep-behind-the-wheel: When your eyes and your mind want to rest, it doesn't matter where you are.

... OK, I needed a break and I needed groceries, so I went out. As usual, I aimed for more than I could accomplish: I had to stand to brush snow off the car before setting off; the store was crowded, which makes navigating hard (I can't move as fast or turn as sharply as others in a crowd wish I would); on the way home I stopped at the library to pick up a book-on-tape (I don't read for pleasure any more, I listen with my eyes shut), and it was crowded there, too, so I had to stand on line waiting for help. That's a lot to accomplish on one afternoon! - but I thought perhaps if I got home in good enough shape, I could pick up my gym bag and head back out for a work-out.

Of course not. I made it home, put things away, and found myself arguing with the radio. Aha! Warning symptom - what I've started to call "cranky baby syndrome." When I'm tired and don't want to give up, I get cranky, like any tired baby who refuses to go to bed. If I don't lie down and rest, I get really nasty, and/or I cry and start thinking of what I prefer to refer to as "apoptosis." (That's a bit less forbidding to my psyche than the term "suicide.")

So I turned on a different radio station, lay down flat next to the cat for an hour, and accepted the fact that, although I usually make it to the gym twice a week for a good, sweaty work-out, this is going to be another week when I'm lucky to make it once.

More about Fatigue? You ask: "Do you know of others with MS who report this problem?" (falling asleep behind the wheel) - and I have to reply I haven't looked into it, but I'd be surprised if it isn't a common problem.

You ask, "How much is this affecting your ability to get out and about, and are other alternatives available in your area?" - The answer: I signed up for The Ride, but I hope I never have to use it! I remind friends that I have a handicap placard, and if they drive me to events, they can get a parking space. I explain to others that I can't attend their far-flung activities unless I can get a ride, and ask if I can bring a guest (driver).

If an activity will last several hours, I balance whether I can afford a day or two of rest to catch up; if it's not something special, I usually say no. I no longer travel casually to several-day-long events. That said, I've taken part in some demanding activities lately, with lots of help: I went to a wedding in NYS a year ago, but everyone knew I'd have to get there early, stay in the motel and rest a lot, and rest for a week when I got home. Last summer I gave in to a friend's urging that I take part in a play he was directing, but I needed rides to all rehearsals, I sat back-stage with my eyes shut during the performances, and I was very glad the production was an on-book reading (my memory isn't dependable). In fact, I attended several demanding activities last summer... but I weigh things carefully and take vacation time before, during and after... and I depend entirely on rides.

I'm comparing this to the years when my husband and I spent "vacations" visiting my sick mother in Poughkeepsie and his sick mother in Erie, sharing the driving - and I often did more than my half because the driver had control of the music! I'm comparing this play to the years when I found it impossible to sit at all backstage during a show, because my adrenaline was so high, and I knew everybody else's part as well as my own. I'm comparing it to all the operas and operettas and plays I've directed, going from production meetings to auditions to rehearsals to tech week to final dress to the cast party... and I note that the good times I'm comparing with took place *after* my MS diagnosis. Things have gotten much harder and Fatigue much more of a problem since a) my legs gave out and b) my husband left me - which happened at about the same time. I have to do a lot more for myself, at a time when doing things for myself has become harder, so there's a lot less energy for others.

You ask:
"...what things other than walking do you try to stay in shape?  Walking is highly recommended for people in all conditions, but what else do you enjoy and how does it interact with/help with fatigue?" I get furious when "experts" tell us all to walk! Walking is an activity I have to be very careful with... walking requires coordination among lots of parts and systems, and can be exhausting. If my legs get tired, my whole body and mind become tired, and I can't do anything but cry or sleep.

That said... I was introduced to a wheeled walker with a seat a few years ago, and it turned out to be wonderful! I had agreed to go with a group to Israel, and was afraid I'd spend the whole trip alone in a motel room, unable to do anything but sleep, since so many activities are inaccessable to wheelchairs or scooters. With my walker, I could go almost everywhere everyone else went; when we were going too fast or too far, my companions competed for the priviledge of pushing me while I sat; we spent so much time in a tour bus that I was able to nap as much as I needed... so walking turned out to be possible. I got home with the idea that if I could walk holding on to my walker, I could walk on the treadmill at the gym - and I do! I've gone from a starting speed of .25 mph to 2.5 mph - with an occasional 1/2 minute of running as fast as 6 mph! (I can't run any longer; my legs go into spasm.) At first my goal was to walk for 15 minutes; now my goal is to see how quickly I can travel a mile.

In addition, I've used almost all the other weight machines at the gym (not the ones that call for standing!) since my legs made it impossible to take part in my old favorite exercise: walking up and down the basement stairs for 1/2 hr, carrying hand weights. Working out at the gym definitely reduces fatigue: I take my mind off my problems, I'm in a better mood, I sleep better... It's extra-frustrating when I'm tired enough that I don't trust myself to drive to the gym to work out, but when I'm a "cranky baby," I'm really better off at home.

I have other non-walking exercises that still use my legs: About a year after my legs weakened and went into spasm, I was delighted to find that I could still do jumping-jacks. Another experiment revealed that I can still jump rope! (I can't *skip* rope, because that causes the same problem as walking: it calls for standing on one leg at a time and coordinating the actions of two independent legs.) So if I can't make it to the gym, I'll try to jump rope for a while... it doesn't give me a full-body workout, but it's good for aerobics.

I've been a bike rider since early childhood, but I can't ride a bike now. I ride a trike instead - no balance problems, and I can sit and rest when I need to. When the weather is good, I ride my trike to the gym, or to the PO, or for other errands... or just for the pleasure of being out in the sun.

Singing is an aerobic exercise, too - breath control is key. I still sing operatic works, although having to sit while singing high notes limits what I can do.

I wish I could swim.. but although swimming itself would be fine, the difficulties of getting from a locker room to a pool, then from the pool to a shower, and - totally impossible - standing in the shower to wash the chlorine from my hair, leave me swearing that when I finally win the Publisher's Clearing House sweepstakes, I'll purchase a lap pool for my own house and swim at my leisure.

Finally, you ask: "When you're tired, how do you ensure you get exercise regardless?" Oh - that's hard! I do my morning stretches and mild work-out every day, but if I'm too tired to go out, that's usually all I do. Knowing the emotional danger that comes with Cranky Baby syndrome, I choose to rest until I'm sure I'm emotionally as well as physically safe.


I'm sorry your New Year's Eve was a loss - I hope you've already had lots of other fun activities this month, and foresee lots more in the year to come. The Mozart party was satisfying and fun, and I have other musical events coming up that will also be fun... for which I need to keep in good shape.

All the best -
Marion


PS: What does Fatigue feel like? An MSer whose site is no longer on-line explained that he once found out that he had mono - and it was a complete surprise, because he didn't feel anything different from his normal MS Fatigue. No surprise! I've had both Mono and MS Fatigue, and they're about the same.