i used to joke with people who came to our house for dinner and had a fabulous meal, almost always prepared by my wife alison (she cooked, i cleaned), that i had married well. it was true in more ways than just the dinner parties – she has always been the organizer of vacations, the balancer of the checkbook, and generally the head-chief-boss (as my son used to say) of the family. that, in addition to her cheerful temperament and astonishing good looks, has always made me feel like the luckiest man on the planet.

now, almost ten years into my ms diagnosis, and as i become gradually more disabled – or should i say less able to do the things i used to do – she has stepped up her game. it seems every day there is another thing i cannot do – carry my laundry basket upstairs, haul wood for the fireplace up from the basement, vacuum the dog hair off the carpet or fix the bathroom faucet (which she just did). she fills in where i can’t go with a smile and as much understanding as an observer can have of my feelings about disability. i thank her every day, and we’ve had a few conversations about how one of the things i fret over is being useless and a burden, and that she has never made me feel that way.

so, suffice to say, she is a saint. and i swear i am not exaggerating (or bragging). after our latest conversation about how much i appreciate every little thing she does for me, it started to bug me that just me thanking her was not enough. but what can i possibly do, with my limitations, to perhaps begin to pay her back? a day at the spa, dinner out, or a borders gift certificate would all be appreciated, but they are nowhere near what i feel i need to do for her. i’ve been thinking it over for a while, and i am stumped. she was (and i hope still is) planing to go to amsterdam with a friend (she has a close business associate who lives there), and at first i was a little upset that she invited the friend and not me as her companion. but now i am all in favor. she deserves it, she deserves time away from me (god knows!) and i think it will be great for her to go on this adventure. but as great as it will be, it’s not something i am doing for her, or giving her.

maybe in the end, just my making an effort to remain as healthy as i can for as long as i can will be all i can really do. that and thank my lucky stars that, somehow all those years ago, i was blessed to find a saint who would consent to marry me. i hope you are all as lucky as i am.

(any suggestions on how to thank a saint would be appreciated, by the way!)

Share this Post

a good friend of mine  told me that when her father had a TIA, before his massive stroke, he commented that god had given him  little push, and not the big shove he  could have given him. i got a little understanding of that concept the other day when i got my foot tangled in the accelerator/brake of my car, and found myself careening in reverse completely out of control. fortunately i was in a parking lot, and i am not clear on the details of how i got from speeding out of control in reverse to careening out of control in drive, out of the parking lot, across what is normally a very busy street and into another parking lot where i managed to come to a stop and got out to survey the damage. terrifying on reflection. minimal damage to my  car, but when i returned to the scene of the crime, i discovered that i had smashed into another car, taking out his front quarter panel, took out a cedar fence and knocked over a propane tank, fortunately not exploding it. a very nice cop came by to sort it all out for us – everyone else involved was very understanding (i was the only human involved in all the crashing around, and aside from a few aches that showed up here and there over the next few days, i was fine. insurance info was exchanged- it was all very civilized – and we went our separate ways.

could have been a lot worse. my wake up call was that it was time to move from foot controls to hand controls – which are on order.  i am a little doubtful about them, but we shall see. for now, i am not driving (got to hitch ride in a mini with a rather hot blonde today, so it’s not all bad). i don’t know, it seems this multiple sclerosis business is starting to get expensive. i just ordered a bar for my bed which will make it possible for me to get out of it on my own, and these hand controls are not cheap. not sure how much insurance will pay for. so as i’ve said before, it is hard to see my earning potential decrease while the cost of my daily life keeps increasing. somehow doesn’t seem fair.

but  as one of my tai chi instructors, who was bald, said, if life were fair, he would not be bald. for what that is worth.

Share this Post

i have the fantasy of living someplace with no stress, quiet, space, comfort. eating very simply and cleanly – fruit, vegetables, brown rice, maybe a toasted bagel every now and then. sleeping when i am sleepy, getting up when i am not sleepy. and no meds. allow symptoms to be what they are, to play themselves out, to leave them alone and see where they go. i have accepted the ethos of leaping to medicate any symptom, any function of my body that is deemed by some doctor or other – or me – to be in need of correcting or changing. that goes for depression, it goes for my leg cramps, it goes for my blood pressure, it goes for headaches. what would happen if i just let the muscle cramps be, and stopped filling myself with drugs that often (but not always) make the cramps bearable and allow me to sleep, but also contribute to my difficulty with walking, with balance and with coordination. yes, i have to sleep at night so that i can go to work in the morning. but what if i could just let the cramps alone, what if i didn’t have to get up and go to work in the morning?

i guess what i really want to know is what else are these meds doing to me beyond dealing with, however imperfectly, the reasons i take them? what else does klonapin do to me besides (sometimes, if i take enough) make my leg muscles relax? i still have a very hard time getting comfortable in bed – i can get comfortable enough to sleep, if i am tired enough – and in the morning, it still feels like i have been climbing a mountain all night. and how would i feel if i let what drugs i have in me now to run their course. i wonder how much of how i live contributes to how i feel, and then  take drugs to make me not feel that way.

and if i simplified my life as close as i could to its basics, would those symptoms go away?

Share this Post

join my son in the fight against cancer:

if i can figure out how to do it, i’ll start a “beards vs ms” campaign.Share this Post

i’m finally going to a long-awaited multiple sclerosis clinic at a local rehab hospital. my neuro tells me there will be therapists from all sorts of specialties – occupational, physical, speech, etc. – most of which i don’t think i will really need. i’m hoping to get some help with the leg cramps, the insomnia, get some ideas about how to most effectively use the gym i belong to, or some other excersize programs. my neuro said it’s great, because i get three hours of these therapists dealing with just me – no sharing! more later….Share this Post

     

Share this Post

     

when you leave a comment, it would be nice if you left a link to your web site, or, if you dare, your email address.

sister morphine/ marianne faithful

were it not for my lovely wife and amazing children (among others too numerous to name), i don’t know that i’d be able to resist.Share this Post

     

i’ll let you in on a secret (don’t let the feds in on this one): i “borrowed” a pinch of pot from a friend recently, just to see what it felt like and if it might help with the jimmy-leg. it had been decades since i’d last partaken, and i must say i did not like the feeling of being high. while it’s not a big deal to possess very small amounts of pot here in maine, with or without a note from your doctor, we will be voting on the question in november. and i am very hopeful that the president has seen fit to recommend that the feds leave us little guys alone.

i didn’t smoke enough this time to know if it would have done any good, but i have the feeling instinctively that the muscle relaxant quality of marijuana would be very beneficial. i’m sure i could get used to the high feeling, and i like the idea that we can by-pass the whole drug industry and finally have a means to treat our muscle cramps, spasticity and pain on our own terms. i hope the dea can respect the responsible use of this weed and leave us alone.

Share this Post

either wordpress (the host of this blog) is yanking my chain, or there is a medication-residue-buildup in my already frayed brain (ms gives new meaning to “yer working my last good nerve!”) but i seem to remember that when i went to my own blog, there was a header with links so that i could post new material, and do all the blog-housecleaning. now it seems i have to go to wordpress.com and log on every time, and get to those housekeeping links from there. it’s probably just me, but it is really annoying. anyway.

i have said before that i rarely visit other people’s blogs. i feel a little bad about it, but there are just so many, who has time to visit them all? i appreciate all of you who blog about your lives, sharing the ms experience as much as it can be shared through the written word. and i appreciate all of you who visit my blog, even though i don’t visit yours.

i used to have a blog-roll on my site, but for some dimly remembered reason (probably irational, too) i deleted it. well, i’m going to try to invest more time in reading other people’s writings. i mean, i’m up half the night waiting for the drugs to make my jimmy-leg go away. i might as well educated myself. so i’m adding a blogroll to this site (if i can figure out how to do it), and i’ll be visiting other blogs and adding ones that i find myself reading regularly. it’ll be a slow process, and don’t be offended if you’d doesn’t show up right away (or ever – there’s a lot of you out there!). i’m making up for lost time, so be patient with me. you know i love you all.

Share this Post