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

I don't bake anymore

On an MS forum, I recently came across a "wild diagnosis stories" thread about peoples' reactions to being diagnosed. Not the lengthy wait times or misdiagnosed problems people faced, but what they did in response to the diagnosis. Some dyed their hair a bold colour, others got piercings or tattoos, and some quit jobs and traveled around the world. It got me thinking and I guess I'm boringly pragmatic - I got myself in better shape.

I tend to put my faith in science (less so in the politics of pharmaceuticals), but knew that starting a disease-modifying drug program could only do so much. I'd have to take responsibility for my health more than I had been doing and start paying attention to maximizing function if I wanted to do everything I could to hold onto it longterm. 

When weighed for my first MRI, I was shocked to know my weight had hit 200 lbs. I had completely lost sight of my own body. In the past, I'd hit the gym on a nearly daily basis. When I moved and that was no longer an option, I started running around my janky neighbourhod in Ontario to the dulcet sounds of Mary J Blige and old country tunes. I did ashtanga along with a pastel-painted TV show and later on my own, managing to get my inflexible self mastering some damn intricate poses. My dumbbells and I had a love-in every other day. But, when I moved from Ontario to the maritimes, my life became still. My semi-sedentary nature was entrenched in a sedentary lifestyle. Work had cheap junk food in the cafeteria. I didn't have anyone to work out with. Excuses to mask laziness. [I tried to think of a nicer word for laziness, but the shoe fit] I look at photos of me from the early 2000s and wonder who that girl is and how she got so full of face. 

Just before my diagnosis, I had a little epiphany and realized that my life was too sedentary for my liking so I started walking regularly. I bought and started using an elliptical machine. Then, I was stricken with MS [sometimes I like to use the phrasing other people use to describe me...isn't it hilarious?] my feet went numb, and my legs and entire lower body quickly followed suit, and I didn't think twice about siting on the couch to wait for bad news. Did you know that I stress bake? For real. If I'm stressed, the house smells like cookies or stout cake.* Inactivity + stress baking. Oh yeah,  great combo.

When the news of having MS arrived, I was having panic attacks on the regular. The first time I tried to go for a walk, I ended up going solo. I made it halfway around my 2km block and panicked. Shortness of breath, dizziness, heart banging out Bartok - I thought I was going to black out on some stranger's perfectly manicured lawn in suburbia. Impaled by a Weed Man sign. Instead, I took a shortcut and talked myself through getting home. "You're fine. You're not dying any faster than anyone else. You've walked this countless times. If all else fails, you can whisper a cry for help and people will call the police for by-law violation". I joke with myself when worried. It helps.

I made it home, flustered and teary-eyed, but in one piece. So, then I went out again. I bought a cane. It was for mental support as much as physical support. At that point I couldn't feel the bottoms of my feet (or the tops, for that matter) and that sensation of being off balance was affecting my willingness to go places. I had had a panic attack in the mall with a friend a few days earlier and had hardly been outside the door since. I knew the numbness was a big part of the panic and I didn't want a cane, but I wanted panic even less.

I eventually tried that walk again and I was fine. I carried the cane, but didn't use it. I definitely needed the physical support for a while, but when I got used to the sensation [or lack thereof], showing myself I could go without it was important to me. Then I went for another walk. Then another. Pretty soon I was walking around 30 km a week and feeling great. I stopped stress baking. I bought a weight scale (despite a love hate relationship with the concept). I got back into a little weight lifting and some yoga. I decided to become a pescatarian. I later realized it'd be just as easy for me to become a vegetarian, so I dropped seafood too. 

In the years since diagnosis, I've made better choices. I made the difficult choice to leave a relationship that was easy and kind because it felt like I was alive but not living. I picked up new hobbies...ones that took me outdoors! I have half marathon medals now! I've worn out too many pairs of sneakers to count. I dropped negative people from my life as much as possible. Life with MS has changed me in numerous ways, and yeah, it's a huge, scary monster some days, but not all days.  I didn't do anything wild or unconventional. No blue hair. No new piercings. But I did react and adapt. Those intricate yoga poses? Not even close to doing them now, but eff that, I have snowshoeing to do. 

*Poor Nance. I'm happy so she doesn't get fresh cookies.

2014? Already?

Happy New Year!

2013 was a great year for me, despite a lot of down time with the dog. Love her to bits, though, and fingers crossed for good health and no unexpected major expenses this year. 

Speaking of yellow dog, she has been LOVING this early winter weather and pretty much wanders around in a face slide or making doggy snow angels. Goofball. It's been a bit tricky for us to take her on all of our outings lately since the cold has been so...cold. With a windchill in the -30s, her little paws can't stand prolonged contact with the ground. I've been using invisible boots again (the salve you slather on to protect against salt and cold) but it just can't compete with the -30 temps. 

Anyhow, the upside of all of the ice and snow is I'm back on snowshoes again! Whooo! We've been out a few times and I could not wipe the grin from my face on the first outing. Sunshine, snow, Nance's smirk, and a racing dog. It was so incredibly peaceful. I won't pretend my cardio's where it needs to be, but am pretty confident we'll be on the snowshoes enough during the winter that I'll stop sucking wind at the top of hills. 

On the health side of things, I'm finding it hard to keep the sensation in my feet when showshoeing. I'm careful not to overtighten the toe strap of the shoes. I wear a loose-ish sock and don't tie my boots tightly either, so I'm not sure what else to try. Those hand warmers burn my skin if left in one spot too long, so I don't think I ca use those in my footwear. I've tried double socks and that's a no go too. Stupid comorbities - I look forward to cool weather all summer long only to lose all sensation in my toes and fingers from Raynauds. I swear I keep SmartWool in the black all year 'round! 

Sidebar: It is incredibly interesting to me that I have 3 cousins with MS (all female), at least 2 with Raynauds, and no one on one side of my family ever has warm feet. Won't someone please sit next to me and tell me the circulatory system has nothing to do with MS again...

So, I thought I'd do a little taking stock from 2013. Things I'm particularly grateful for:

1. My health and that of those around me. I have MS. It's no more a death sentence than being born is. It's not something I'd choose, but I have it and it's not going anywhere. So far it's not impacting me to any severe degree. I make better choices based on it, and that part was hard to figure out, but it's getting easier. 

2. The funniest, most charming pets in the world. I know it sounds silly to many, but I spend all day, every day with these two critters and would be at a loss without their snuggles. [Note: If they weren't so cute, their wrestling sessions would annoy me to an early grave}

3. Love. I am loved. I love. That helps me to laugh often, smile more any one person deserves to, and offers me the freedom to be the person I am and expand my comfort zone.

4. The basics - having a roof over my head and food to eat. It's easy to forget how fortunate I really am just to have those. A recent ice storm left many around us without power, no running water, no way to shower, and no viable means to cook. It's unfathomable to me that so many in the world face that on a daily basis.

I lean towards being an appreciative person (or, I sure think and hope I do), so the list would be endless if I kept going, but that's the short version.

I'm totally humbled by Santa's visit this year. Myself, I'm trying to move towards giving experiences more than material goods since it's hard to find "stuff" that those around me need or might want. I'm not sure I'm any better at finding experiences to give! Y'all need to drop more hints. :)

I'm overjoyed by this funky little ukulele Santa left with my name on it. I've been  strumming along to a lot of my faves (and transposing others so I can simplify the chords to match my novice skills). Poor Nance, someone should have given her earplugs.

I am totally excited to see what 2013 brings. I hope it brings nothing but the best for you.

x

hidden monsters

As hinted at in my previous post, my stranger feet are back. Thankfully, there's no complex walking, just the paraesthesia - numbness from both knees down. Blah. I've been brooding on this since it started up again - how will I respond if and when the sensation disappears forever? I always assume it will return again - that I will regain the sensation I've lost. I am an eternal optimist but I know that particular expectation is a naive sentiment to many with MS. I realize that many cases of relapsing remitting MS change to progressive/secondary progressive MS at some point, but I'm not sure I'm mentally prepared to lose sensation to this disease, one limb at a time. Apt, but creepy, one of the early names for MS was "creeping paralysis" - geez, way to be uplifting. It's a strange thing to see a splinter in my foot and not be able to feel it. I know millions deal with much worse, but I'm in a bit of emotional tumult over it these days. 

I'm assuming this is a relapse and not a pseudoexacerbation - a big word for the best case scenario. Last night, no matter what position I tried to sleep in, it felt like a hidden monster was gnawing on the full length of my right arm. Constant biting pressure. Not joint pain, not necessarily muscular - intense arm pain from below the shoulder to my wrist. I extended my arm towards my sleeping feet, bent it at the elbow to rest my wrist on my belly, raised it over my head, stuffed it under my pillow, but nothing changed the feeling of being a monster's lunch. I stared at the time projected onto the ceiling for four hours before finally slipping into sleep. Demons don't dine quickly.

This isn't meant to get you down or show you that I'm down. I'm lost in my head about it at times and will freely admit that needing a moment to get my balance because I misjudged my foot placement makes me sad, but it is what it is. It makes getting over the Abbey-proofing baby gates more of a challenge than before, but I can still get around just fine. No need to dust off the cane or grab at the walls or furniture. To look at me, you'd not see a struggle. I hope the foot and leg sensation returns. It's 10 in the morning and last night's excruciating arm pain has completely disappeared, so that makes me optimistic. Ever the fool. (true story: someone who is naive is technically termed a naif) The only way for me to avoid despondency and hopelessness when faced with relapse is to will myself not to define it as misery-inducing. Happiness is very often a choice from within.  

Getting MS was never on my agenda and now I can't seem to get it off the long-term calendar. I have to live with invisible monsters for the rest of my life, so I'm trying to look past the fear that comes with each new symptom and focus on the contentment I have in other parts of my life. Contentment that can, when not clouded by fear and discomfort, eclipse physical disability. Maybe I am ever the fool, and I'm certainly not happy to have multiple sclerosis, but I can be happy in spite of it.

Stranger Feet, the sequel

This post is potentially upsetting to those close to me and to those of you have MS and are newly diagnosed. Consider sitting this one out.

Saturday was a great day - had a little doggy hike, supper with friends, and a keg party fundraiser at a pub. 

And it all torpedoed in an MS moment. At the bar, I went to the washroom - wait, to clarify... granted, I had had a number of frosty beverages, but I was by no means completely sozzled. I like that warm, tipsy feeling, but don't like the loss of control that comes with drinking too much, so I try to moderate myself. So, I went off to the washroom and took a step from the stall towards the sink and Left Foot sneered at me, "You want to walk forwards, eh?" and it yanked me sideways. Right Foot wasn't much help. It shuffled off a little waywardly and then ignored me. Stranger feet had returned.

Fuck. (sorry, mom)

There was no one around, so I stayed there a minute, composing myself. I knew I hadn't had all that much to drink and my feet were telling me this wasn't from the booze. MS moments aren't all that common for me and when they happen, they take some emotional grappling. After a minute or two, I told Left Foot that I was going the hell home, with its cooperation or not. So, my feet got their act together somewhat and I was able to take a few steps. I ambled back and forth in the washroom until I was fairly certain I'd not fall down, and then headed back outside. Nancy had noticed me missing for a while and was on her way to see if I was okay. Left Foot decided to take yet another snooze, no matter what signals my brain were trying to send to it. I told Nance I had to leave. My brain to foot transmission was sincerely messed up. So, without a word to a small group of friends, we left the pub and hit the sidewalk. Each step a misguided, misdirected crapshoot.

By the time we made it to the sidewalk, I had started crying. Overwhelmed. A random, friendly drunk man stopped to make sure everything was okay. Not sure what he thought was wrong, but it took a little convincing for him to keep walking. I love Atlantic Canada. Even the drunk people are polite.

We grabbed a cab home and I was pretty much a sobbing mess by the time we stopped outside our doorstep. I was crushed. 

See, not being able to walk a straight line from a few too many beers? Well, that I can handle. Not being able to walk a straight line nor predict which direction your foot will move? Incredibly unsettling. Left Foot was a wobbling, lurching entity every third or fourth step.

Thankfully, Nance helped me inside and sat with me while I blubbered and snivelled. Grieving normalcy begins again with every big MS moment - never the same twice, but the emotion has to be processed anew each time. I'd love to be able to tell people that you get used to it, but you just don't. The stairs were too daunting, so I bunked on the couch for the night. I laid awake, contemplating the unpredictability of MS for a while, finally lulled to sleep by the heavy purring against my side. 

I woke today with a tiny headache. No stranger feet. Dark emotional cloud.

Lesson learned: If I say the phrase "I am so tired" BEFORE heading out somewhere for the night, I should 1. stay home, or 2. nap, ffs. I need to respect fatigue and the results tiredness can wield. This isn't the first time that being tired has brought a sticky onslaught of symptoms.

Had a sea glass picking beach stroll with friends today to take my mind off of my body. Nothing calms me like being on a beach. I can't remember a time when that wasn't the way.

In much better news, it's 10 weeks until my very dear friend visits from the other side of the Atlantic. Lots of fun planned. With naps.

I'm not dead, honest!

Okay, time for a frikken update. Y'all must have given up on me by now, but let me tell you - puppies are a LOT of work! (no one told me this!)

This toothy little bundle (11 weeks, 22-23 pounds-ish) is the most boisterous creature I have ever encountered. Pair that with a authoritative Siamese cat and it's a complete gong show 24/7. The silver lining is that the scrapes and cuts on my hands are healing, the trips to the backyard at 2 AM are now sliding towards 3-4 AM, and this yellow ball of fun is so adorable, she'd make Cher's heart melt. [insert glossy-eyed, blissed out puppy love gaze here]

In other news…wait for it….wait for it…I have health care coverage! I still have to do a dance and jump through a few hoops to see what kind of coverage they'll provide for Avonex, but anything is better than paying nearly 2 grand a month for 4 tiny syringes. So, much yayness on that front. I'm excited and relieved. I can't talk about it with any seriousness because I become a relieved, weeping mess, so let's avoid that, shall we?

In other other news, I've registered to walk another half marathon. The Bluenose again. I swore I wouldn't walk this route again, but by now I've forgotten how deceptively hilly it is (shh, don't remind me) and how there were zero volunteers in the Point Pleasant Park last year to offer any sort of encouragement up Cardiac Hill. There were unenthusiastic boy scouts who complained to me about being bored and grunted and pointed in the direction of the race route at each major turn. A huge contrast to the lovely volunteer who screamed at me (in a good way), "YOU EAT HILLS LIKE THIS FOR BREAKFAST!" on a small incline around the 18km mark. Love those people. If you can make me grin when I'm sweating and hungry, you are a god among men.

I'm excited to do the race this time around. Nance's sis and cousin are walking it too, so it'll be an adventure! I'm working up my long walks with no issues. Nance walked 13.5 with me this past Monday (sorry, Nance, thought it was just under 13, but I had miscalculated) and I'm not having any hints of IT band or hip flexor twinges with that distance, so I'll up it again this Sunday even though there's plenty of time to build distance since the race isn't until May 22nd. It's nice to feel like I'm at a point in my life where I have a good base fitness level. Comforting. Exercise makes me healthy in a number of ways: basic health-wise (yay for making lungs and heart work!), but moreso it reminds me that I'm doing what I can to stave off MS as much as possible. I eat well, I sweat well, I take the prescribed disease-modifying drugs, I laugh hard and often… It works for me.

Life is good.

Who owns these things?

I woke this morning with a stranger's feet in my bed.

Oddly enough, they were attached to my legs.

This is my life. I have MS. I wish I started blogging about this four years ago, but better late than never.

Stick around. Life's mostly fabulous.