part I: Dublin

Holy shamrocks, I have a lot of words to type!

I longhanded our trip highlights and that's a lotta pages, so I'll try to pluck the plumpest grapes for storytelling. Or not - you know me, I tend to ramble.

So, Ireland. Short version: I loved it. You can stop reading now.

Dublin is one of those big cities that somehow holds onto a healthy smattering of charm despite the rush of crowds and traffic. Colourful buildings, whimsical decor, and an overall positive feeling. Humour is injected into storefront signs, and pub names are frequently bawdy or otherwise entertaining, much like home. This pub is not named for what you'd expect.

I don't know if people in bigger cities have the same level of friendliness as reported, but coming from Newfoundland, the land of slaughtering you with kindness, it's hard to judge. Friendly enough.

One thing that stuck out to me right away was the lack of cell phones. People aren't as glued to their cells there as we are here in Canada. On any given day I see the mobile appendages of most of my friends. They're on the table at restaurants, even if we're resisting the urge to check every bleep and chirp. In Dublin, you rarely see a table full of mute young people thumbing their phones. There aren't signs advertising free wifi at every turn either.

In pubs, you don't see hordes of people with their hands glued to their ears or fiddling with lit crotches in cafes. Phones almost seem to be used as phones. It's refreshing.

I'm off topic. Surely that's not the most impressive thing about Dublin, but it's damn impressive.

We had opportunity to see the massive Dublin Castle complex and Gothic/Romanesque Christ Church Cathedral, with its medieval edifice. The architecture of the city is head turning and I'm sure an architecture walking tour would have been fascinating had we more time. Ireland has a thick, dark history and you can't walk ten feet without tripping over something old and impressive...and heartbreaking. So much turmoil.

And, in the current age, such rich entertainment. Theatres left, right, and centre. Ads for shows and live music at every turn. You'd spend ages scoping out an endless line of performances.

Trying to fit as much in as possible, we hit The Brazen Head pub (instagram link), established in 1198 (according to the pub and some historians...not all). Nice pint of Guinness, that. We discovered packaged condiments on the table here and wondered at the mysterious Brown Sauce. And left it at wondering. Some mysteries are best unsolved. Packaged condiments are only really found in fast food restaurants in our region, but they were in every pub and restaurant we visited in Ireland.

On the condiment note - big props for never having to ask for malt vinegar anywhere! Always on the table. Ireland, Newfoundland, and PEI share the vinegar love.

We did a lot of walking around the city and over the many bridges across the River Liffey, but paced ourselves on pubs. Heading into a week of hiking, we didn't want to be carrying hangovers with us. We wandered to the hallowed grounds of Guinness via some sketchy roads suggested by Google and later popped into Darkey Kelly's for live music and beer sampling. Nance sampled. I ordered Guinness. Why order anything else when you've found perfection? The Irish sure know how to pour a good black pint - perfectly cooked and then topped before delivery. Pay attention, SJ pubs!

Darkey Kelly's was, once upon a time, a brothel and is now named after its madam, Dorcas "Darkey" Kelly. Kelly was accused of killing a shoemaker on St. Patrick's Day in 1760...or 1746 (history is wibbly in Ireland) Kelly was hanged and burned at the stake for the crime and for witchcraft. Or for the alleged murder of her child. Hard to know which factual account to believe. Investigators later found four or five skeletons (depending on which historian you side with) in the brothel vaults, placing Kelly among the world's earliest known female serial killers.

A peculiar bit of history to attach to a pub, but whatever floats your boat. The music was crackin' and the beers were delicious. I also loved that the pub had a "no ball cap or tracksuits" rule. Gotta love a former brothel owner/serial killer's home that has standards!

Oddities: 

• having the washroom security code printed on the Starbucks receipt and then having to unlock again from the inside to get out. They sure are big on toilet security.
• Paying 20p to pee in a mall. What if you don't have change, people!? I rarely have silver on me! Come to Canada - peeing is free!

Now, let me warn you if you've never been there - the sidewalks in Dublin are meant to test you. They are legitimately out to get you under ideal conditions - under a clear bright sky you still have to look down. One moment you're walking on cobblestone, the next minute there's a nice big gap out of nowhere and you're on angled cement, then pavement, uneven brickwork, then back to stone. So, I can only assume that people who have had a few pints either get a cab, walk in the streets, or give the fuck up and sit on a stoop until they can navigate the neck cracky pathways.

Exhibit A.

Happily, we stopped after a few pints and got back to our B&B with our ankles intact.

Our Dublin lodgings were an Airbnb adventure that panned out reasonably well. We had a private room with a queen-sized bed. Hysterically, the bed was the lower bunk in a set of bunkbeds. I don't know why this amused me so much, but I kept picturing someone else walking in to claim the top single bunk. We shared the household bathroom with our Brazilian hosts.

Our interaction with our hosts was minimal since we were there for such a short stay. We did meet another guest, Ryan from... I dunno, the US somewhere. Georgia? The best part of this household was undoubtedly the bulldog puppy. I was in love. Beautiful pup. Couldn't figure out how to carry her on the hike, though, so I didn't pupnap her.

Bibs and bobs: they showed us how to use the powered shower, having never seen one before. On/off. Start/stop. Pretty easy.

The shower mat was a wooden crate top. I like it. No wet mat.

We found the train station the night before leaving so we could figure out our itinerary. My sister-in-law just cringed, I'm sure. We don't plan things out much. It usually works out.

No one at the Dublin train station had ever heard of our destination, Annascaul. 

Hmm. They consulted this map and that map, and it was nowhere to be found. The lovely Dublin train employee called the nearest train station to the Dingle Peninsula, Tralee. The employee of the Tralee station ran across the road to the Tralee bus station to see if it headed to Annascaul. And success! After much laughter, googling, and map reading we were all set for the next morning. The train people even told us to buy our tickets online to cut the cost nearly in half. Super helpful!

I'd do a short stint in Dublin again, for sure, but our destination was the countryside, so we were eager to leave the city bustle behind and get going.

Wifey and blue bag of awesome.

The next day was a travel day of trains, buses, tiny roads, mild fear (see previously mentioned buses and then add previously mentioned tiny roads), and more pubs! Shocker, I know.

From an MS perspective, no problem with the flight length, I was getting plenty of rest, and the weather was cool. No trouble with the time zone difference either. All systems go!

Dingle bound!

xo 

life as it is

I have been pretty busy since moving back to the big city of #saintawesome. It's been a flurry of cleaning, unpacking, organizing, and general prettification, and we're finally getting back to normal.

Well, more normal after a yard sale. And some shelves.

I'm not sure what kind of environmental hoohaw has occurred since we left but this has been a sweltering, brain mushing week. Trying to think through porridge. It's been in the low 30s the last four days and that slows the aforementioned progress to a drunk sloth's pace.

With the heat comes symptoms, of course. Shittiest cracker jack surprise ever - here's some sunshine and heat and hidden inside is the lasting sensation of carpet burn for your left arm, and spider webs on your right! Go, me!

But, screw that kind of talk because our late honeymoon in Ireland is drawing nigh and we couldn't be more excited! I have been making lists of the essentials - passports, adapters, extra card for the camera, and candy. natch. I have a sweet tooth on hikes. I blame Robyn Benincasa for that. Too much time watching her eat Twizzlers in the Eco-Challenges. Funny, she ate jerky too but I have no I penchant for that. I realize how obscure this reference is. It's hot, remember. My brain is as floppy as an over easy poach.

Nance's parents, aka the guests/ petsitters, arrive tonight or tomorrow, depending on how tired they are after the gulf cruise. It's about a six hour drive after the ferry. Blergh.

It'll be great to spend some time with them before we fly out. Fun to not have an agenda for a few days. We'll have almost a week with them to get them used to the animals and their habits. I am excited that they're bringing little Luce too. They have had her for years but it seems like only last year Nance found her wandering the highway in the middle of nowhere. She's a cutie. She and Abbey and Ringo will have to figure it all out. Luce never liked Abbey (jealous boots/resource guarder) and Ringo used to stalk the little dog. Sooo, we'll see!

We have very thoughtful friends who have offered to take Abbey out for exercise now and then, so we'll leave all appropriate numbers for the babysitters. Our dog needs a village.

It will be so strange not to see Abbey for that long. We kennelled her once when we went to Québec and once for something I don't remember but other than that, she's been with me from the moment she got off the plane from her kennel. Is it weird that I am emotional at the thought? Probably. Blaming that on Tara. I spent part of the morning looking at photos of a dog she lost recently. Heart tugs. lots of good memories.

Nance is also en route as we...as I type. She's still working in the Northwest, so I get her for ends of weeks and weekends. Not ideal but it is what it is. Can't wait to see her. We're sickening, really. If people knew how lovey we are at home, it'd be a vomfest.

So, yeah. Ireland. We have the first seven days planned, I believe. After that we're considering England. Not to see Big Ben, nope, not Buckingham Palace, the London Eye, the Tower of London, Westminster Abbey, nor Madame Tussauds either...no, no. We'd be going for the sea glass. Yes. Sea glass. In Seaham. I swear she's okay with it.

We may end up happily staying in Ireland for the entirety of our travels. Who knows. It will be fantastic, no matter what we do. We need to sort it soon, though. Accommodations are on the dear side in the UK. Airbnb has been great for planning, so far. We're staying at a proven gay-friendly spot in Dublin our first night. Safety first!

Let's see...what have I missed? We did a Color Run. Hilarious and fun right up until the point where MS threw up the middle finger at being in the sun for so long. Got confused near the end. Meh, still had a lot of fun.

It is super having friends so close again. This was a good move.

On that note, I should go chill some frosties for my wife.

Oh, she's home. Later dudes.

xo

grumpy bear

Cranky day here. 

No real reason that I can suss. I got plenty of exercise. It wasn't overly warm outside or in the house. I had plenty to eat (because we all know how that goes otherwise).

I was edgy from the time I got up until late evening for no tangible reason. MS affects mood and I sometimes find myself reasoning out my edginess to figure out the root cause. For the life of me, I have no clue what was up today. Even I didn't want to be around me. The animals were wrestling (aka, slapping each other harmlessly while howling) this afternoon, but that noise was the only concrete irritant, and by then I had been sporting my crankypants for hours.

I did all my feel good things - I tried sweating it away with weights. I meditated. I walked the dog twice. I played the uke. I listened to a favourite playlist. I wrote for an hour...and that one definitely didn't help because I am in an editing stage that requires far more patience than I had today. Like light years far.

Nothing helped. And, if you know me well, you know I hate being grumpy. Hate it. I may not be a natural Cheer Bear on the outside, but I am an eternal optimist and invest a lot in the good, genuine, and silly things in life. So, being grumpy? Not my thing. And it's aggravatingly self reinforcing! Being cranky makes me cranky!

Thennnn Nance came home from work [note: she had fair warning that I was irritable and wasn't scared off] and we brought the dog to the river. Ahhhhh, right? Surely being near the water helped! Nuh-uh. I tossed Abbey's favourite toy into the water for her to retrieve but the current was too strong, it got away from her, and the toy was lost forever.

From "cranky for no reason" to "cranky for this %#$ing reason" in 1 second flat.

It's just a dog toy, I know. But it was her favourite floaty toy. And now my environmentally-minded, nature-loving self has lobbed a red hunk of rubber off into nature never to be properly disposed of. Argh!

Put me to bed, tomorrow awaits.

xo

what the hell are sclerae anyway?

It is World MS Day! Where's my cake?

It has been ten glorious, rich, trying, fulfilling years since the neurologist called me and, channelling Arnie, told me my brain problem was not a toomah.

He went on to tell me it was probable MS. That I had an incurable and debilitating disease, and not just a disease, but a disease in my brain and spinal cord! A disease of likely progressive disability. Not a moment you treasure in life. 

I wish I could go back and tell my thirty-year-old self to trust that it would work out okay-ish...at least for the next/past ten years. The night the neurologist told me I had MS was the single scariest moment of my life. Back then I was having panic attacks because of the numbness from toes to ribs. My walking was off. My speech was funny when I drank cold beverages. My swallowing felt laborious. The panic was causing vertigo. Vertigo was causing nausea. I was irritable and anxious. All in all, very dark times. 

Back then I was struck by all the literature about blindness and paralysis. I read everything I could, and the outcomes looked bleak. The unknown was terrifying. Getting out of bed was hard. Getting myself to work and focusing on things that suddenly didn't matter to me was overwhelming. In my spare time, I was researching anti-inflammatory diets, the statistics behind MS mobility and paralysis, and the main MS CRAB medications. In typical fashion, I wanted to know everything. In retrospect, knowing everything was unhelpful. There is no typical outcome for MS. There is no one standard disease pathogenesis. MS manifests and progresses differently in every single person it affects. 

Back then I didn't realize that what would come would be a whole lot of grey, both literally and figuratively. I have had optic neuritis every two years or so - often enough for me not to take my vision for granted. I think my left eye blur is finally fading again. The colour desaturation seems to be evening out, or I have adjusted to the annoyance it. I believe it's the former, though - things seem less blah in my left eye.

Today I feel well. I have my standard numbness - parts of me I will never feel again, but nothing out of the ordinary. Today I took the dog out for a little hike - neither of us loved the blistering sun, but we both loved being outdoors. Eleven years ago I wouldn't have thought much of the heat. It would have been an annoyance, but that's it. Today it made me circle back to the house for water, take a shadier route. MS requires planning.

I hate planning.

It is World MS Day. A day for awareness. Maybe to celebrate the things MS does not touch. Or maybe to even appreciate what MS has given us. I am grateful for every healthy day. MS brought me closer to a cousin I had not been in touch with for a while and whose quick wit I love. It has shown me a caring, fun-loving community of people who face the same things I face every day. It has made me stronger in ways I couldn't even begin to list - having to adjust to a new normal on the regular will do that. I'm not going to bs you into thinking that life with MS is fine and dandy - it's not. It blows. I have moments of resentment and profound sadness. But I can't help but notice a lot of other people out there who have it so much worse than I do. I have a home. I have a wife who approaches my life with MS in the most direct, selfless way you could imagine. I am happy. I am able. 

xo

wandering in the fog and the woods

To get the MS update over with, yes, my vision continues to be toast in my left eye.

That's all I have to report.

On to other things!

We have signed up for the Halifax Regional Search & Rescue's Eco-Endurance Challenge again! It's an orienteering adventure held in the woods of Nova Scotia. Nance and I entered the 8-hour recreational category as a two-person team, The Happy Campers (t-shirts and all, yo). The countdown is on and it's only 10 days away.

We are excited to meet up with team Jedis and Padawans - friends and their kids. So, that's four adults, two 10-year olds, and two bouncy dogs in one suite. Should be hilarious. I am very curious how the kids will do over an 8-hour stretch searching for flags with a compass and map. That's a long time on your feet! Snacks and games will be key to prevent grumpiness. My grumpiness, that is.

The last time we went on this adventure, we were team Huffin' Puffins, joined by my father-in-law and brother-in-law. I was very excited, but it was brutal. Ticks, heat, and the flies were so thick, we were inhaling them. Actually, let's not go down this road of expounding all the bad things about that day now that I've signed up for it again. We survived! And it's totally live and learn. Bringing tick deterrent this time and planning for heat.

Ah yes, heat - my arch nemesis. The bane of most people with MS. It steals my tongue and blindfolds my feet. This time I will be bringing a cooling towel, sun or no sun. It's bad enough to be confused and start talking and walking funny when near home - super not fun when you're miles from help. Team Happy Campers is planning ahead and will be ending this one as happy campers, dammit!

I'll report back when the event is over and see how that turned out.

In other news...

Spring is finally springing on the homestead and that means a new season of groans in this old house. Paging Bob Vila! Nothing too pressing or we'd ask the owner to call in a professional, but this week one of the toilets needed fixing and the dryer needed a new vent (putting an end to the rodent superhighway and icy porch). Enter my love of tools.

No one was hurt. I'm handier than I look.

I have been on an 8km a day kick lately and it is HARD. Not the walking itself. I feel great and my legs are functioning just fine these days. Frankly, New Denmark is rich in 1) potatoes, and 2) land. Wide open spaces - you'd think this would be a cinch, right? Naw. It's so fricken' windy because of the lack of...anything. So, walking gets tricky. I wear earplugs most of the time to keep the wind from blowing my thoughts away. Also, there's a lot of bear scat in the fields now and we saw one a few days ago, so field walks are much more careful now. Also also, there are no sidewalks or anything resembling shoulders on the roads, so it's a bit risky. Especially with ear plugs. Also*3, people here don't fence or tie their dogs (yay!) so I am greeted and followed by strange dogs no matter which direction I try (boo!). Yesterday Abbey and I walked two km with a lovely mixed breed, Maya.

Adorable, yes, but I couldn't keep going and have her follow me the other 5 km back home. Or, I suppose I could have, but then I'd have worried about her not making it home safely [note above section on lack of sidewalks or shoulders].

So, there it is. Walking is officially harder when you have massive space in which to roam. Or something. And now I'm paying to go do just that in the woods. ;)

xo

stranger vision

Ugh, we're here again.

This is the cloudy zone. Not unlike the twilight zone but lacking the gremlin on the wing. You're probably too young to get that.

So, after an evening of fun and beverages this Easter weekend, I woke with a gnawing headache. When I woke at four in the morning, I assumed the pointy objects developing behind my eyes were the beginnings of a day of feeling pale.

The night before, we went for drinks with two friends and that turned into a ten-person evening at their place. You see where this is going. Anyone who knows me well knows I have terrible social anxiety, particularly if I go into a social situation expecting one thing and it turns into another, regardless of how lovely the people involved may be. My two beer turned into a glass or so of unexpected wine.

But, it wasn't a mother of a hangover at all. Turns out I still have MS. 

Damn.

It was the start of optic neuritis. Again. Round 4.

The first time I had optic neuritis [ON from here on] was pretty scary. It's beyond unsettling to suddenly have reduced vision, and the saturation difference is eerie. If you wear contacts, having ON, once the pain dissipates, assuming it dissipates, is like having only one contact in…for months. Your depth perception gets screwy.

Like all three previous bouts with ON, this round only affects my left eye. I suppose that's a silver lining, but I'm not looking for rainbows and sunshine about it yet. I'm still in the upset stage. No tantrums or wailing and I know the anger will pass quickly, but if I don't respect the emotion behind this, it'll linger even longer. I'm all about the shortest route to being okay.

Things I had forgotten about optic neuritis:

• Just how painful it is at first. I could barely stand the feel of an ice pack against my eye. The pain is much more manageable now. Almost gone.
• I bump into things on my left at first onset. I get a bruised elbow, shoulder, and hip. Tonight at 9, "when door frames attack".
• I have to be careful about placing drinks to my left or I'll send them flying. 
• It's nauseating at first. 
• Typing and reading are weird. I read left to right, obvs, and it's like the words get clearer as the sentence grows.
• I randomly find myself closing my alternating eye/s for comparison and look like I'm flirting with the rocking chair.

Attractive.

I'm not altogether sure what triggered this. I had a few days of drinking to some excess while in SJ. Sort of an "I don't get to do this often" mentality while thoroughly enjoying the company of close friends. Whether that set it off or not, who knows, but I am back on track. 

On the way home to New Denmark, we stopped at a great Asian market I used to visit all the time. I felt like Darryl Dixon on a supply run - basically racing up and down the aisles, grabbing one of everything. Finding options that we can't find in this region is like winning a teeny lottery. I see a lot of sour soups in the upcoming weeks. We've already worked through the jackfruit. 

 

So, that's where I am. Slacking at the blog. Processing a lot of emotion from late last year that flew by in a blur. Writing a lot of poetry. Trying to gather a story or several about the place we live now. Floundering about on social media. My interest in Facebook is at an all-time low, so I find myself posting more elsewhere.

The walking is going well. We'll be ready for the long days in Ireland well ahead of schedule. One thing this area has plenty of is space, so I've been taking advantage. My cardio is still cow shite, but it's coming. 

We bought new boxing pads when visiting the Princess of Power and fam, so that's working its way back into a routine as of this week. 

That's what's new with me. Peace out. I'm off to watch something on Netflix and snuggle with superwifey. 

xo

alone

Posting, even though this was stuck in drafts for ages.

---

An arm pushes from beneath a pile of rumpled blankets. The fist unfolds to release a white flag. The arm flails pathetically….

Fine, it's a germy tissue, but my surrender still stands.

Colds suck - the exhaustion, the sneezing, the burny eyes and nagging cough. Sucks. When a cold also makes your knees numb and triggers the feeling of carpet burn up and down the side of one arm - super sucks. I feel like my immune system goofed off at Hogwarts and learned half-assed spells intended to annoy me.

Okay, whining over. I am a day or two or three from kicking this virus's ass, thank jeebus. Mind you, I said that three days ago too. All hail Neocitran, the mighty god of fucked up dreams, but decent sleep.

Now if that carpet burn sensation could disappear, that'd be fab.

The daily snowshoes/hikes picked back up again yesterday, now that I can hold my head up and the brilliant ball in the sky doesn't make my eyes stream. If there is one fantastic perk of living here, that's it - the fields. I can open the door, throw on my snowshoes and walk with the dog for an hour without having to drive anywhere first. To the back of the field, down through the brambles, around a copse of evergreens and back again and my heart and lungs are hollerin'.

When I say "walk with the dog" I mean the dog is within sight at most times. That could mean 4 feet or 300 metres, so it's a loose phrase. She has superb recall, so it's fantastic to be able to let her run free. She likes to bull+china shop her way through the brier. Who needs the easy way when you can gleefully bulldoze your way around?

I am loving the walks. I'd like to wax poetic and regale you with stories of how the dog and I bond, traipsing side-by-side, but really, we're both in our separate worlds. She sniffs out every scattering of deer droppings and lifts a paw to tell me they're there. Thankfully, the days of wanting to roll in dung are years past us. [Er, she was the one who used to roll in horseshit, not me. Granted, I have spoken a lot if it in my time.] Or she trundles along sticking her nose into cat, bird, or even her own tracks, adding to her endless inventory of "cool stuff that was here recently".

The time with her is precious to me. I love watching her soak up the outdoors. When she stops to flop and floop around on her back in the hard packed snow, I laugh every time. It is the picture of joy.

And, for some reason, snowshoeing doesn't much feel like exercise when I pop out the door and get at it. If the snow is hard packed, I throw on heavy Sorels for the added heat and weight, and leave the rackets behind. I get the same lung joy as I would at the gym, without the mental effort it takes to work myself into it. It's just right there. There are no excuses...and I love it, so I don't try to make any. Me and my dog. And my MS, so I take my phone in case of emergency.

I was going to end this here, but friends have been asking how I feel living in the country, so….

I won't live here forever - I miss the ocean and my friends far too much - but this necessary move has offered up a unique experience that we are both trying to immerse ourselves in to the fullest. I felt isolated living in town. Not lonely exactly, that is a rare feeling for me, but alone. Now when Nance is away, I don't feel that at all, even though I am surrounded by nothing but fields of white and the whistling wind. It's easier to absorb being alone when you're surrounded by nature.

Loneliness is not a totally foreign concept to me. Because I'm on the far end of introversion, I rarely feel it from a social inclusion perspective, but I feel alone in MS on a semi-regular basis. I have the best support anyone could ask for, but Nance is not inside this head with me. I feel what I feel on my own. And while I like and need to communicate how I am, it's also a lot of effort to try to explain why I am not 100% in a given moment. Why I'm teary. Why I am flexing my hand or clearing my throat (most of the time I'm unaware of doing so). So, even if I let my wife into my head, which is my go to, sometimes I choose to be alone with it. And I've learned to be okay with that, for the most part.

So, I'm okay living here. Better than okay. I walked 6 km this morning with the dog and felt free. Myself. I'm not lonely here.

xo

danced in their heads

After weeks of boozy, sugar-coated overindulgence, the holidays are swiftly coming to a close…

...unlike the zipper on my jeans.

Irish cream in morning coffee, social drinks nearly every day, snacky foods we don't eat year round - I'm all for Christmas cheer, but my clothes are starting to request danger pay. Back to better consumption habits, immediatement! If anyone craves tiny cupcake-shaped chocolates, please help yourself to our cupboards. Leftmost, top shelf.

Fortunately, we have isolation to help loosen our waistbands over the next few months. [Covering my assets, I say "we" as my wife insists she is in need of a renewed eating plan as well. I'm not, in any way, suggesting she needs it.] When you live in an area without neighbourhood corner stores or restaurants, meal planning becomes more important and somehow easier to stick to. 

Not that we won't see anyone through the winter but we have a very small handful of friends within 300km of us. We'll surely get together with the friends we have here, but they have committed to better eating through the winter too. So, we are set up for success. Prepare for my utterly foul mood during sugar detox. I'm already finding myself scrambling to find something sweet in the morning and cursing Christmas cheer for letting sugarplum fairies lead the charge. Being removed from convenience can sometimes be a good thing.

Something happens to me in semi-seclusion. Without the distractions of TV and a social life, I tend to write and draw more. And I tend to write better. Not on this blog, mind you, but my pen or pencil stabs away at paper more. When you don't physically write much, it feels strange not to tap out your thoughts with fingertips. How odd.

It has always been this way. In my younger years I always wrote most when at the cabin. Being alone with my thoughts makes them louder. That's mostly a good thing.

My thoughts about MS have always been fairly quiet. Not that I don't have frustration or fears about having MS, but after my first year as a person with MS, my inner dialogue quieted to a murmur, for the most part. I have never been able to write about in in a concretely creative way. I have a half-assed poem about MRI claustrophobia but that's it. I have tried to write about having a (mostly) invisible disease, but it bores me. It's not interesting enough for me to put my energy into. I have wondered if denial keeps me from delving into that side of my life in a creative fashion, but I don't think so. Which sounds a lot like denial, right? 

It seems fertile ground for many authors, some with MS. Silent struggle, bravery [Raoul], hope - it's all so self absorbed...unlike keeping a blog, of course. But I write about it here and that seems enough. I stay on top of the research (MS sufferers* benefit from high levels of vitamin D). I try to remain active and eat well, the last few weeks notwithstanding. But I can't romanticise a disease that has taken things from me. It doesn't anger me enough to work up artistic acrimony. It's upsetting and sometimes to a degree that few around me would guess, but I've never been one to work out my fears out loud or in  any way other than straightforward. While I may pitch an internal hissy fit at new or worsening symptoms, I am accepting of MS and don't want to give it more room in my life than it deserves.  

It is a gorgeous, cold day in New Denmark. At -28, the wind chill is a degree colder than yesterday's face blazing snowshoe. I have learned that one needs a balaclava to snowshoe across breezy, open potato fields once January hits. The Ireland walking tour is half a year away but has become motivation to get outside even in bitey weather. Even when sloth suggests I really, really don't want to. At all.

We three [catface makes four, but he's anti-snow] love being outdoors together, so this winter is going to add a lot of miles to the snowshoes. Nance has found a new spin class. We have the treadmill in the den. Now if only someone could hide the remaining snacks.

xo

*authors and researchers need to stop using this language. We're people with MS before we're sufferers or patients. Get with the fucking times.

walk this way

I took Abbey to a park this morning - we have a few hours of driving this afternoon, so I wanted to burn off some puppy power beforehand. As I popped out of the car and headed towards the few stairs that lead to a field, I stumbled. The boots I had on aren't made for snow. Two quick recovery steps to the left. Phew, righted, or so I thought. Two more quick recovery steps to the left.

It wasn't lasting. I didn't fall. I didn't hurt myself or anyone else. The scary part of those four seconds was that I was feeling fine. Rested. Present. Happy. And, just like that, I was reminded how MS can drop in for a quick chat out of the blue.

Now, I really want to blame it on this sinus thing that's brewing. No grip on my boots. Tired. But I am fairly certain none of those were to blame. I find it difficult to describe having MS when people ask. Some people lose mobility with MS. Some have impaired vision. While I have had affected ambulation and problems with my peepers, I mainly seem to get random weirdness that even WebMD doesn't cover [see previous post]. How do you describe this buckshot scatter of symptoms to people and help them understand? And is it worth sharing just how strange our bodies can be?

life in a box

I filled in one of those personality tests recently and one of the questions was about déjà vu and whether I find history repeating itself often..how foreshadowy.

Here we are, again, at the beginning of December, packing our worldly possessions onto bite sized pieces. Or, feasibly carrying sized boxes. It turns out that on a pleasant Sunday, as one sips coffee and contemplates life - or watches The Muppets, whatevs - one can be booted from one's comfort zone when a stranger pulls up out front and pounds a SOLD sign into the frozen earth of the front yard. That is the current sitch.

The house we were renting sold. We were given a month's notice once we tracked down the landlord to ask if there was something we should know. Unfortunately that month is December, a month packed full of travel and, y'know, Christmas. Soooo, back to the land of boxes and tape.

Thanks to a friend's connections, we were very fortunate in finding a new place to rent quickly - not everyone will rent to people with multiple pets. Very few would rent to us if they saw Abbey in all her boisterous glory. The owners of the new place, however, are animal people and had cats and dogs themselves. There's even a fenced in dog yard surrounding the back door.

So, where will we live, you ask [let's pretend you were curious]?! Well, we are moving to the even teenier town of New Denmark. Population somewhere between 400 and 1100, depending on your source.

We have started moving ourselves, one truckload at a time, and have made a lot of progress. I am happy to report that we'll have help with the rest of the large items. We moved two mattresses ourselves and learned that 90 year old houses can be tricky. For example, the stairwells are at supernatural angles that can make mattresses expand to triple their width and weight somehow. Fascinating, really.

It is a cute house and I look forward to making it home in the upcoming weeks, but boy what I'd give for a time machine right now. Or a magic wand. Where's Samantha's nose when you need it?

The distance from town will mean that I won't get to see my darling wife every day at noon. But rather than focus on the few dark clouds, here are a few of the highlights: there are miles and miles of snowshoeing trails. We won't have random dingdong dashing because we only have one neighbour. It's waaay easier to eat better when you have a decent drive to get to a store. The dog is going to be blissed out with her huge playground out back (read: someone's snowy potato fields).

One of the tough parts of a sudden move is my opportunistic friend, MS. I don't have the option of sitting back and relaxing, so I have been a little more symptomatic than usual. I have the strangest, grossest sensation of constantly feeling like there's a hair on my tongue at the back of my throat, even though there's nothing there. Ick doesn't begin to describe that. To make life slightly comical, my upper lip feels like it's bouncy. When I talk, there's a very noticeable vibration in my top lip as my lips meet. Bizarro. And, loathe not to live up to the blog name, my feet feel like someone else's again. Numb soles. That sounds more emo than intended.

I am taking care of myself. Trying to get to bed early. Meditating. I took a few days off of packing to be with Nance while she's on the road for work. Forced stoppage. It feels impractical not to be home packing but this is the smarter move. Today, rather than wrap dishes or bag shoes, I grabbed a fancy coffee, bought a new hat and brought Wonder Dog to a park. It was a stunningly beautiful time. Sunshine, snow, happy dog. Big smiles.

xo

rings n things

Radio silence over.


I like blogging but it's like going out for a walk in the rain - hard to take the first step. So, here I am, solo on a Thursday night, listening to the snore of one huge dog and trying to stiff arm the cat from having a nap on the laptop.

So, what's new in the life of me? I'm married! We had a great time planning the big day except for a few minor snags. The day before the wedding was less than ideal - hot HOT hot and a lot of people everywhere. It was decorating day. Their help was appreciated but I can only manage so much stress and extroverts (even the understanding, well-meaning, helpful ones) don't always get how just sitting quietly in a room full of people is extremely stressful sometimes - let alone when they're all calling your name. Add heat and my own million thoughts to process and you get me standing in the walk-in fridge repeatedly to gather myself.

Decorating day was fun with a mix of overwhelming moments stirred in. At times it felt like we bit off a bit more than we could chew and we were wondering if we had been overly ambitious in planning a wedding in a community we no longer lived in.

…but it turned into something spectacular! People genuinely seemed to have a blast. The photos tell the story of people having a great time with friends and new friends. The music was good. The food was amazing. Even the weather behaved (read: I didn't fall over in the sun). We had a ball from the ceremony into the wee hours. My wife looked stunning and I now take every opportunity to use that word. The only thing I'd change, given a time machine, would be to find more time to sit and talk to everyone. Or better yet, dance with everyone!

My shoes were well worn.

It was incredible and humbling to have so many loved ones travel to share in our day. Childhood friends to brand new friends - every face there was so appreciated. Our siblings spoke at the reception and both made us cry - touching and funny. Yeah, so, moving on because the screen's getting blurry as I think about it. They're great.

Sooo, married life is amazing. From an MS perspective, it's peace of mind for me - there's comfort in knowing that no one can question Nancy's role in my life if something were to happen to me (organ donation, cremation, beach scatter, for the record). But it's more than that (obvs!) - we have something great and it's a marker of that success. Between us, we have many certifications, medals, and honours - why not have one for our relationship? In our "non-traditional" (snicker) lives, it's a satisfying tradition to uphold - marry the person you can't live without. Would we have continued on down the road of happiness without these rings? Of course. But it's really great to have them.

Since the wedding we've been back and forth to the house (still for sale!) a few times. It's convenient to have an empty house to stay in, but boy wouldn't it be great to have it sold! We decided to actively look for tenants for the winter to try to offset some of the costs.

What else? The weather has cooled enough for me to get back into regular dog walks and that is so fulfilling. I love heading out into the world with her and seeing what fun we can find. I have needed a kick in the pants to get out more lately and the crisp air is just what the doctor ordered.

Speaking of kicks in pantseses, I've been frustrated by leg soreness since September. Not just now and then - it's a full time gig I didn't sign up for. I have some upper right arm weirdness too but it's quick spasms like that strange eye flutter everyone gets when tired - nothing too tricky. An annoyance more than anything. Every time I stand from a seated position, however, both legs are painful. I first noticed it the week before the wedding so it may be a stress-induced relapse. I also switched a few (non-MS) medications around then, so it could be related to that. Whatever it is, it's free to leave anytime!

I feel like my first few steps are those of an ancient woman - stooped, shuffling, and cringing. Not fun. Once the imaginary tin man shares his oil can, I'm fine and can keep moving without noticing it too much. It feels muscular sometimes and just plain nerve-painy other times. As I sit here and type I try to identify the sensation. It hides a little when I have the stimulation of the seat beneath me, but there it is - a deep, dull ache. I've been taking baths more than ever to try to ease it, even though I have a thorough understanding of chronic pain and realize that a bath won't hush the errant signals. Baths are soothing, though, so I tell myself to go soak for a while even when I couldn't be arsed.

I don't like to complain. No. That's not right - I do like to complain. In fact, it comes all too naturally to me but I don't want to become comfortable in complaints, so I try to keep them at a minimum. Mindfulness and all that. I share my leg pain and other symptom information for transparency. MS isn't something that only strikes me every few years in a relapse. It's distressing every day. Maybe I share those things here so I'm voicing them. Forcing myself to acknowledge MS. That said, I am very fortunate that mine is manageable. Thankfully, I haven't yet faced the big dementors of the MS world - depression, paralysis, blindness…if all I can complain about is this steady leg pain, I figure I'm still coming out on top.
xo

when skies are grey

It is currently 30 degrees in my living room and it's just past noon. Time to turn the furnace on to blow some cold basement air around! It's dusty, but it works.

Other people are all:
It's SO NICE to sit out in the heat!
and I'm all:

Locals warned me about the hothothot summers here, and I witnessed a few days of it when visiting last year, but boy - it's been scorching these last few days! It's a tricky thing to manage with MS. I get serious cognitive dysfunction when my body temperature goes up, so it's hard to find motivation to leave the house. Last week Nance and I were out for a little walk with pooch and after around 25 minutes (mainly in the shade), the heat hit me like a ton of bricks. I don't feel it happening. I don't realize that I stop walking. I go from fine to waaay not fine like someone has thrown a shutdown command without a restart option. We went from sauntering up the hill to get home to me shuffling to the side of the road, foggy-brained, and annoyed with N for holding a water bottle too close to me.

It didn't dawn on me she was suggesting I drink some of it. Cog fog removes common sense processing. And I can't articulate my thoughts in those moments, which is the scariest part. I know I'm too warm, but can't think how to fix it on my own. Being dependent on someone else to recognize those signs is not ideal. I took a drink, found some shade and after a few moments someone pushed the On button again.

On the flip side of not wanting to seek out opportunities that may bring cog fog, exercise is of great benefit for those with MS (and…well, everyone), and I love being outside. These elements combined leave me in a pickle. Do I grab the soccer ball and run "suicides" with Nance? (no…tried that…bad idea for all kinds of reasons) Do I stay indoors and become resentful? Also, no bueno.

If someone can suggest an outdoor summer activity that keeps me relatively cool and is available in my current location (no swimming pools other than a small kids pool, don't even suggest it), lemme know. The beach used to be a great option since the ocean gave a cool breeze, we could walk, and the dog could get a swim in. Sadly, moving inland has struck that from the list of possibilities. My best idea so far is to carry an oversized patio umbrella around with me, but I'm not so sure that's socially acceptable.

And I'm told walking to get an ice cream does not count as exercise.

new findings

What we know is never concrete and whole.

Nothing makes that more apparent than the recent discovery that our brain has lymphatic vessels that were previously undetected. Thousands of specialists may now have to rethink their understanding of the brain. For those unsure, one of the lymphatic system's functions is defence against foreign particles, microorganisms, and diseases via the immune system. One big filtration system. So, if that filtration system has some weird issue in a vital organ such as, let's just say, the BRAIN - bad things can happen.

It's a pretty big "wow!" moment and turns our understanding of the brain on its [apologies] head. The brain has a drainage system that no one knew about? Seriously? No one knew the tub had an open plug? All along, we thought that the blood brain barrier, something akin to a conniving barbapapa, from what I can tell, was the only entrance to the brain's home.

Another function of the lymphatic system is that of absorbing fat soluble vitamins, like vitamin D and transporting those substances to venous circulation. Still with me? Could drainage be the problem after all? Does this somehow explain why people with MS respond so well to vitamin D? Does this explain why or how CCSVI works for some? (the lymphatic system would eventually drain into the jugular)

What is happening?! How can all of this be? It's exciting and confusing at once!

Sure, anatomy textbooks have needed updates before (Belgium found a new knee ligament just a few years ago), but this feels like a potentially huge leap forward for research. If there are lymphatic vessels in the brain, the blood brain barrier has a backdoor and we may be able to start understanding why - yes, why - some MS drugs actually work. Or, maybe, maaaaybe even start  getting a better handle on causation. Dare I even conjure a whammy on that one?

Imagine if neurologists, immunologists, radiologists, and pharmaceutical companies all got on the same page! Don't roll your eyes at me; it could happen, right?

This finding may have a more immediate impact on people with Alzheimer's than it will for MS, but it is a very compelling piece of science either way. People with Alzheimer's are shown to have huge chunks of protein in the brain for no known reason. Now the number one suspect is a relatively straightforward drainage problem. So far, these lymph vessels have been found in mouse model studies and confirmed in human autopsy.

So, now we wait to see what comes of this.

Because something will. 

To paraphrase Buddhist canon, "three things cannot be long hidden: the sun, the moon, and the truth".

xo

World MS Day 2015

In light of World MS Day, let me take a moment to talk about my least favourite question: How are you feeling? 

(Close seconds being "how is your body?" [shudder] or "How is your MS?")

Don't get me wrong, I love how supportive my people are. I have super friends and family and the most amazing girl in the world behind me. But, for the life of me, I can't figure out how to answer this question. No one actually wants to hear "Well, I haven't felt my right shin in I dunno how long...and man, grabbing hold of the right word in the right moment is becoming increasingly harder." No one wants to read the boring litany of new MS research studies that never make it past studies on Mickey and Minnie.

This isn't a flu. It's not a cracked bone that can mend or a wound that will close. It's not like there's an -ectomy or -otomy to remove what I have. The answer is never truly "fine" - that would be a constant lie. Nor do I want to talk about my every twinge and ailment. So, what is there to say?

This disease will be with me for the rest of my very (universe-willing) long life. MS is chronic and progressive. I will, most inevitably, decline at some point. Marking that decline through small talk isn't high on my list of things to do.

My life is different. I've been rewired head-to-toe by a drunken electrician. Life is good but it is often a multitude of tiny struggles that defy description. 

So, if you're wondering how I am, ask how I am. Please don't ask me how I'm feeling.

xo