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At its heart, MS is a thieving son of a bitch, a stone cold felon that pilfers from its victims with complete contempt and utter disregard. It takes both great and small, a kleptomaniac that steals everything from vital functionality to the simplest of pleasures. I'd never advocate for cruel and unusual punishment, but MS deserves to have its hands chopped off.
This past Wednesday night I got very little sleep, due to insomnia, an old friend from way back before Multiple Sclerosis muscled its way into my life. I maybe slept for two and half hours. Then the alarm went off, and I slowly pulled myself together and made ready to go to two doctors’ appointments. That might sound simple enough, but as anybody with advanced MS can tell you, even when fully rested, the effort of getting out of bed, dressed, and ready to venture out into the world can be exhausting enough to have you diving right back into bed. Nevertheless, I did some basic grooming, struggled into some clothes, and motored the wheelchair out onto the streets of the city. Happily, the weather outside was absolutely glorious.
First up was my primary care guy, a quick visit just to update him on all of info and insights that the NIH has gleaned from my trips down to Bethesda. My PCP is a truly decent human being, who's been a genuine ally throughout this whole MS ordeal, and I try my best to keep him apprised of all new developments. Then it was off to the pain doctor, just a few blocks away, to simply get a new prescription of pain meds that I take, ironically, to sleep. I had to wait a while to see the doctor, who was busy performing some kind of a procedure on a patient who I could hear screaming in the next room, but I got my prescriptions and was soon on my way.
Once outside, despite being exhausted, I decided to head down to the Hudson River, just because it was so incredibly nice out. I was out and about anyway, might as well take advantage of the day. Figured I could take some photos, and smoke a good cigar.
Yes, I do like the occasional stogie. I'm fully aware that cigars are vile and disgusting things, not to mention bad for you. But life would be unbearably dull devoid of all things that are vile and disgusting and bad for you, and MS prevents me from partaking in most of my old vile and disgusting pleasures. If you scratch just a little bit beneath my well studied Zen detachment and artistic pretensions, you'll find the makings of a cigar chomping, liquor swilling, poker playing good-for-nothing. I can't help it, I come by it naturally. It's genetic. My grandfather was a gangster (really).
So I headed down to the Hudson, along which the city has built a beautiful riverwalk/bike path/park, and found myself a nice little spot to light up and take in the view across the river. And that's just what I did, listening to some Afro Cuban All Stars tunes to complete my little feast for the senses. All was well, the cigar was as sweet as the music, and despite being tired, I staked out my own little claim on peace.
After savoring the smoke to its natural end, I set about taking some pictures. Soon, though, I was pounced on by a growing wave of nausea and an anvil crashing headache. I tried to ignore it, and then to fight through it, but the photos I was trying to take all sucked, and I was feeling worse by the second. MS was exacting its revenge. How dare I assert myself and claim some peace and pleasure. The beast would remind me just who was firmly at the controls. I started home, my internal monologue a stream of profanity whose target just couldn't give even the slightest damn.
Once back in my cage, I crawled from my chair to the bed and pretty much stayed there for the next 18 hours, trying to drown my miseries in the grip of sleep. MS dug deep into its bag of tricks, and hit me with all guns blazing, dishing out its full retinue of spasticity, spasms, weakness, and overall wretchedness. At last I slept, and after finally getting some rest, I got up and stared at the TV a bit, and then went back to bed. That one cigar wound up costing me the better part of two full days. I could hear my MS cackling maniacally, gaining strength from my weakness.
Damned disease, physical criminal, robber of all that's good. I'm generally slow to anger, but if MS took physical form in front of me, I'd use my good arm and leg to kick it straight in the nuts and claw its eyes out.
At least the disease served to remind me that anger is an energy, yet another vile and disgusting thing that's bad for you in large doses, but which every now and then, in the right spot, can do you world of good...
Whoa, I'm really sorry about the insomnia and the whopping migraine, Marc. Sleep has never been one of my problems; Let me rephrase that. Getting to sleep has never been one of my problems, but Getting on a "normal" schedule, however, still eludes me. Note that I am awake at 4:20 a.m.!ReplyDelete
I have been fortunate to have had just three migraines, ever. One was after a myelogram, and two were post Solumedrol treatment (luck of the draw there). They sure can knock you down.
Are you sure it was the cigar that was the culprit? I assume you have smoked before with no problem. What else might have been the cause?
In any case, I'm glad you got some much needed sleep and are feeling better. And I know what you mean by no longer being able to just get up and go. Those days are long gone for me, too.
Read your blog-unusual to have a man with MS seems to be a female thing.I'm in today asit's so cold out there-not a September.Byway I'm in England. Had MS since 27-got worse last few years so now have to use electric scooter and use carers. I use scooter asneed room for shopping-called my ferrari-I call it my Stavros machine as its my legs[Stavros ruler of Dalecks]ReplyDelete
I have bedthat goes up and swear by my memory mattress and many hand held massagers.
If I can't sleep I have a swig of brandy.
Now flip flow cathetrised so have to drink a lot to avoid headaches-water sees best-If I do get take Anadin Extra and seems to work. Read coffe and feverfew are good so have every night.
Hope this is useful. Done blog but need help to get http labels-last chap was useless so got to look
Sorry to read about how the ms reacted to the cigar.
This shitty disease takes everything I think we should banish it foreover to the planet the baddies in Superman we re sent to.
Hope you have a good day.
I hear you, buddy.ReplyDelete
Too bad how the smallest of pleasures can suddenly become our worst nightmare... provided one can get to sleep at all. Thanks a lot, MS!
And speaking of small pleasures and the occasional appetites you crave, hey... if Karen isn't complaining, I'm not complaining.
By the way, do you like pipes? I do... that is, I like men who do, :) although pipe smoking seems to be a thing of the past these days. Pity.
I hope today is a feel good day for you!
Bad news- MS kicked your ass again (minus 10 points)ReplyDelete
Good news- you captured it for us in another outstanding blog post (plus 2 points)
So if each time MS kicks your ass you have a net loss of 8 points that is not good, but I bet you could make it up on volume and eventually come out ahead.
Marc Im really appreciating your blog, its superbly done!ReplyDelete
Thank you for saying what needs to be said what yearns to be said, and to often is not, you do it with a wit and candor that is a gift to many of us. The videos are awesome and your life is touching many of us who feel without a voice.
Thank you!!! (sloth-aka: row boat on the forums)
PS; your photography is really great to see its awesome work. What kind of camera are your stills shot with anyway? I love photography find it harder tho' as my tremor picks up and my balance is off, too lazy to drag out a tripod since I sorta am a walking one LOL.ReplyDelete
Thanks again...been reading old posts of yours they really touch my heart and brain.
Once in awhile I want to sit and sip red wine. MS has turned me into a really cheap and useless date. Half a glass sends me to bed to sleep it off. When we have company, I have water and wine next to me and know just to sip wine as show, but drink my water really. I never did smoke cigars though.Shoot, sometimes I can hardly stand the smell of old coffee!!ReplyDelete
I can't enjoy a cigar anymore, either.ReplyDelete
Thank god I can still enjoy a nice single malt scotch.
Webster-thanks for the kind thoughts. Yes, I'm pretty sure it was a cigar. I think I inhaled some of the smoke through my nose, while I was futzing with my camera. Since I only have one useful arm, that meant keeping the cigar clenched in my mouth, which probably wasn't a good idea...ReplyDelete
suejan-thanks for all the advice. I'd love to take a nip of brandy to put me to sleep, but I find that alcohol just messes with my MS too much. You're right about MS hitting women in more numbers than men, but PPMS actually strikes men and women in equal numbers. If you're having trouble blogging, try the Microsoft Live Writer program, which you can download free from the Internet. It does all the HTML coding for you...
Herrad-thanks for the nice words, I'm in total agreement with you. MS should be banished to some faraway galaxy. And given a swift kick in the ass on its way out the door...
Centennial-yes, I thinks it's the little pleasures that I miss the most. Like being able to drink a nice cup of tea without having to dash to the bathroom within five minutes after finishing it. I used to smoke a pipe occasionally, but it's kind of a pain having to always refill the bowl and relight the thing. The flavor is wonderful, though...
enjoying-Mitch, I'm not sure where you learned your math, but I like the results. If continual losing eventually results in a big win, I guess the Mets are due for a World Series championship...
sloth-it's wonderful to know that people are appreciating my drivel, and that someway, somehow, I might actually be helping people. There's really no better gift in the world. Thank you...
Sloth-I use a Canon SX10 IS. I have it mounted to my wheelchair with a Gorillapod. If you look at my post "kamikaze camera set up", you'll see my rig.
Kicker-I do the exact same thing with wine and company. I'll take a sip now and then just for the taste, but alcohol seems to really knock me on my butt these days. Damned disease...
haddayr-now you have me craving some good scotch. I might have to "damn the torpedoes" and have myself a good stiff drink...
ok--you and mitch are really inspiring me to blog--the hardest part is where to start. It took a month to post the first blog--today--because I couldn't decide where to start---then I read your blog--(great reading by the way) and thought "just START". So now I have...trippingtales.blogspot.com...ReplyDelete
The first paragraph is positively poetic.ReplyDelete
Your description of the MS bag of tricks is spot-on.
I used to enjoy ice cream, especially at night. Now it wreaks the same havoc, although no doctors will confirm the connection.