August 21, 2015 § 2 Comments
Everyone needs a little pampering, even men. A little time at the spa is often just what the doctor ordered. In my case, it is exactly what the doctor ordered. It’s the only way I’d ever have gotten there.
OK, it’s not really a spa. It’s not even really very relaxing. I don’t come up out of the therapy pool, rising majestically on my little plastic chair, feeling refreshed and rejuvenated. After 20 minutes chest deep in the warm water, the first thing I feel when I resurface is the pull of gravity. In a few minutes, when I am back in the little dressing/shower room, my body reminds me that I have been working out. My morning at the spa is more like a morning at the gym.
The routine I follow in the pool (and disabuse yourself of any notion that this is a swimming pool. At 20′ square X 4′ deep, you’d be literally risking your neck if you tried to swim laps. There are little graphic “No Diving,” warnings all long the edge.) is made up of the same exercises I do at home, gentle repetitions designed to improve range of motion, strengthen leg and arm muscles and build core strength. As I do in the pool, I work from a menu of choices, focusing on different parts of my body, with the aim of varying the routine from day-to-day. At home my goal is 10-15 minutes twice a day, a goal I seldom reach. One therapist told me to approach these workouts as if they were my job – to take them that seriously, with that level of committment. If this really was my job, I’d have been fired long ago.
The reason I go to the added hassle of getting into the pool three times a week – arranging a round trip ride, wheeling into the tiny changing room, changing, showering, wheeling to the pool room, getting lowered like a tea bag into the pool, and then doing it all in reverse after my workout – is that the effort, and benefit, is multiplied by the resistance of the water. The buoyancy also makes it possible to work out longer. Having Dori, the aqua-therapist, telling me what to do helps too.
It’s a good resource, one I am very glad to have access to. I appreciate the fact that the other guy in the pool is as misshapen and injured/crippled as I am – truly a no-judgement zone. My Medicare approved schedule of visits are used up, so if I am to continue working out in the water, I’ll have to self-motivate (not my strong suit) and get myself to the Y. I wish I could bring Dori with me to call out the drill. And maybe the Y will offer a mani/pedi afterwards, to complete the spa treatment.
July 21, 2015 § Leave a comment
When I was in college (in a former lifetime), I had a girlfriend who’s parents were, to my limited worldly experience, very Italian. I used to love visiting them with her on weekends – her mom was a great and prodigious cook. There were always tons of classic Italian eats in the fridge. One weekend in particular stands out in my memory.
It was Easter. Ma had spent several days preparing the feast, and when Sunday rolled around, I was primed and ready. The Groaning Board was just that, and more. Spread out in the dining room was more food than I had ever seen in one place. Two kinds of lasagna. A ham. A bowl of home-made meatballs in home-made marinara sauce. Sausages from the neighborhood butcher. Another bowl brimming with pasta in sauce. A platter of sliced fried eggplant. Bread from the local bakery. Probably some sort of salad. I want to say another platter on pork chops. I know I am forgetting something, but suffice it to say there was enough to feed the entire village of Oceanside.
Now, the activity around the table was as wildly different to me as the amount and variety of food. Very little conversation, as I recall, though I very well could be mistaken. Not knowing any of the extended family, I couldn’t follow stories told about Uncle Nunzio and others. I loved it and soaked in what I could. What struck me, as I recall now some 40 (!) years later was the difference in table manners and etiquette that went around the table. I was brought up with an appreciation for almost formal table manners. Please and Thank you preceded and followed everything. Politeness ruled. Here in Oceanside, I was getting gently teased for asking someone to, “Please pass the salt.” The family vernacular was a wave of a hand and, “Gimme the salt.” It wasn’t rude, it was simply a different culture. I thought it was far more genuine than that in which I had been brought up.
As the meal was winding down – although to my eyes, there was no less food on the table – Ma asked me to pass my plate around for more, the plate I had already filled and emptied two or three times. I politely declined, telling her I didn’t think I could eat another bite. “What, you don’t like it,” she asked with a hint of hurt in her voice. How she could think that, after all of her fantastic food I had put myself outside of, I don’t know. “Oh, no, Ma,” I explained, “I love it all. I’m just full.”
A long story (I could easily have made it longer) to suggest that this is like MS fatigue. When I zone out, or when I’m not paying attention to the conversation, or have to leave the party early, or not even go to the party in he first place, I’m not being rude, I’m just full.
And we hadn’t even gotten to the cheesecakes, pastries, coffee and sweet wine yet.
July 20, 2015 § Leave a comment
This just came to me this morning while I was in the shower, where I do a lot of my deep thinking. I’m heading off for a few days of a mini family gathering, and I was thinking about how hard it is to explain the kind of fatigue that can set in, and persist, from extended socializing. I think this might be the best analogy I’ve come up with yet.
“I’m not being rude, I’m just full.”
MS fatigue is like overeating. Here’s the scenario. A bunch of friends go out to breakfast together. French toast, eggs, bacon, home fries, toast with jam, coffee, maybe scone or two. Yummy, and you’re feeling well fed. A little later, someone in the group suggests popping in to another restaurant for a little brunch. You’re having fun, and you love to eat, and this restaurant in well-known for its brunch menu, so you go along, and have another little meal that is tasty, and you’re having big fun. Noon rolls around, so of course it’s time for lunch. A big salad, a burger or a big fancy sandwich, fries or chips, or both, a beer. You’re starting to feel pretty full, but the gang is still rolling and having fun, so you roll along with them. You’ve had enough to eat, and you’re ready to be done. But you don’t want to break up the party and ask someone to give you a ride home.
Mid-afternoon, and there’s someone’s favorite ice cream shop. Everyone piles inside for shakes and mix-ins and sundaes. Oof. You are starting to feel stuffed and you’re fading. You’re slowing down, but everyone insists that you stay with them, and you’re still having fun, and who doesn’t love eating? Along the way to the dinner restaurant, everyone stops at The Best Pub for a few beers and those wonderful free appetizers. It’s hard to keep up, you’re starting to feel just a tiny bit ill. You opt for a seltzer and say no thanks to the appetizers, though everyone keeps offering them. Are we done yet? No – it’s dinner time! A cheese plate, a cocktail, a three course dinner with a lovely steak and a baked potato, or chicken breast with rice, or pasta Primavera, a few glasses of wine, dessert. You order a salad, pass on the bread sticks and dessert, stick yo seltzer. You are done, definitely feeling ill and really need to go. But, a night-cap! Another little cafe and a glass of Grand Marnier. You pass on beverages, even another glass of ice water is too much. The gang notices your lack of participation, and you get some concerned glances. Finally, someone suggests, bless them, that maybe it’s time to call it a night, which you’ve been hinting at since early evening. But wait! There’s a cool little club with a hot local jazz combo, so off the group goes. You would rather not. You feel like you’re going to be sick any minute. Another drink, another little snack, more fending off, but some wonderful music.
By the time the day and night wind down, and you are delivered to your bed, you feel beyond satisfied and definitely ready to throw up. You’ve way overeaten, your is head awash with one drink too many, and a whole day of great fun with a great bunch of friends. Finally in bed, you find it hard to wind down and sleep, with your belly full to bursting and your head full of conversation, jokes, and drink. But the Sandman arrives, and you manage a few hours. In the morning, you come to and find a hint of nausea and a still full belly. The gang is back, suggesting breakfast, but you simply cannot imagine it. So you play the role of party pooper, and send them off without you. They don’t understand, and wonder quietly what is wrong, why you don’t want to go have fun, and you cannot find the resources to explain. You spend the day by yourself, lying in bed, hoping your digestive system will do its job and that maybe by tonight you’ll feel a little more human.
Yeah, it’s kinda like that.
July 18, 2015 § 2 Comments
July 10, 2015 § 1 Comment
I’m sure everyone who’s anyone has seen the picture of a concert goer crowd surfing in a wheelchair. My reaction, and maybe yours too – was that it looked great, and that I’d love the chance to do something like that. But reading Ollie Knocker’s story reminded me that there are certain protocols and etiquette around wheelchairs.
Ollie and his wheelchair were at festival with friends. They had made their way to the front of the crowd, and his posse offered to lift him up for a better view. They held him up for a few seconds, and then went back to dancing and digging the scene.
Later, after his friends had drifted away, a bunch of drunken revelers got it into their heads to lift him up again, which they did before he could tell them no. One of the handlers slipped and fell, causing the rest of them to drop Ollie. He ended up breaking both legs in 3 places, was in two toe-to-hip casts and spent 3 months in rehab.
Yeah, people bungee jump in wheelchairs, and sky dive, and there’s Sue Austin and her underwater power chair. Those are reasonably controlled situations assisted by trained support crews (one would hope…). And while any wheelchair rider will agree that the assistance of strangers is welcomed (maybe even necessary), there are a few caveats that we’d like our kind Samaritans to be aware of.
- If you are going to open a door for me, which I most definitely appreciate, please step out of the way. Too often, I have to navigate around your toes which I’d rather not crush. And if the door has one of those automatic opener kajiggers, it is usually easier for me to operate it myself.
- Please be aware that my chair is an extension of my body. I can’t say this enough – I really do appreciate your help in opening doors, assisting me over rotten curb cuts or up inclines. But please do not lay hands on my chair without my permission. And when you do, be advised that my chair has certain capacities and limitations that you might not be aware of.
I’ve never experienced any overenthusiastic assistants, but I’ve been in plenty of situations where a little help could go a long wrong way. A person in a wheelchair is not helpless, but is vulnerable. Thank you for your kindness, and for your respect.
July 7, 2015 § 4 Comments
I’m not tired, I’m…what? When I need my down-time, when I need to back out of something I’ve committed to, when I turn down an invitation, I usually say I’m too tired. People seem to accept that – sure, everyone knows that people with MS are often tired. And people understand what “tired” is. Everyone has been tired. “Yeah, I’m tired too.” After a day of hard activity, any kind of physical work or play, we all get that kind of tired. Or after a night of little or no or restless sleep, everyone knows that kind of tired. So when I say I’m tired, everyone nods knowingly, “Yeah, I get it. I’m tired too.” But I’m not tired. So what am I?
MS “tired” is an entirely unique beast. The kind of tired that multiple sclerosis delivers is difficult, at best, to explain. It’s a frame of reference thing. I often liken it to the experience of pregnancy. As compassionate and empathetic as I might have been when my Wife was was pregnant, the experience of pregnancy is something I will never understand. I simply can’t. Yeah, I passed a kidney stone once, and it hurt like hell, and I’ve heard the pain of a kidney stone a bit like the pain of childbirth. But I doubt there is a whole lot of similarity. (My Wife was in labor with our first child for 24 hours. My stone had me writhing for maybe 3 or 4. Of course, when she was done, she had a baby. When I was done, I had a little tiny rock.) So I’ll never be able to understand the experience of childbirth. There are plenty of things like that, things that can only be fully appreciated by them that experience them.
But to say I am tired doesn’t even really mean anything. There needs to be a word for it. “Fatigue” is good, people might know what that is and being fatigued is more that just sleepy. I can say to my Wife that I’m all out of spoons, and she knows what I’m talking about. But Spoon Theory is not well known among muggles (my term for the non-disabled). Weary? “Lacking strength, energy, or freshness because of a need for rest or sleep.” Closer, but sleep doesn’t hardly dent it. Frazzled? Spent? Done? Empty?
The best word I’ve found is “lassitude,” an MS-specific fatigue. MS lassitude can come on without warning. It can appear even after a solid night of sleep (whatever that is). It can make an appearance in the middle of dinner or a party or a pleasant outing. I’ve missed the second half of movies to lassitude. It’s worse in the heat and/or late in the day. Lassitude can dissipate just as quickly and inexplicably as it appears. It doesn’t even have much to do with being tired. A good word. But I’m not sure if anyone knows the definition of lassitude. I didn’t. And how do I use it? “I’m feeling lassy,” people think I’m molesting a collie dog. I’m not ignoring you, I’m just lassy. I’m not bored, or angry, and I don’t mean to be rude. I’m just … lassy. No, not “gassy,” (though I might also be gassy.) Just … lassy. Hmmm.
Maybe, like the famous Rain Chant from Woodstock, if we all just keep saying it, it’ll catch on. But I gotta wrap this up. I’m feeling kinda lassy.