breaking

I have MS. Not news, I know. But it kinda is. I write about it here but it's not a common topic in the real world for me. I am not loathe to talk about it. In fact, I would do speaking engagements about invisible illnesses, given the chance. I moderate an MS forum but don't post there much at all outside of moderator duties. MS is in me but it's not me. I don't give it more attention than I feel it deserves.

But I do have to give it attention.

I have talked a bit about roles before and I have a lot of roles in life. I am a wife. I'm a writer. I am a lover of all things colourful. I am a kitchen dancer, a terrible joke teller, and a cat charmer. I am a reverend of sorts (yes, me). I am a beachcomber, a ukulele torturer, and personal assistant to a dog and a cat. I am a vegetarian, an atheist, and a gay woman. I am a friend. I am a sister. I'm a daughter. But I don't identify with using MS as a role or title. I have MS. I am not an MS victim or an MS patient. MS is something I carry inside me. It has little to do with who I am aside from the constant new normal conditioning. I plan around it but don't feed it.

I rarely bring it up. Again, I don't mind the topic, but I don't necessarily find it all that interesting most of the time. That means that some people forget I have MS or they don't understand that it is something I have to plan around. That I haven't felt parts of my right leg in years. That my legs hurt pretty much all the time. Or that my vision is (still) a little messed up. I don't like the phone because it's easier for me to track a conversation in person or through text. None of that can be considered captivating conversation.

And yet, I do need people to understand it enough to know why I can't always commit to a long day, or why I may hide in a spare room for a while during a visit.

I am here lounging on a bed in a friend's basement to try to recoup some of today's lost spoons. I am done in. I don't want to be resting but my faulty battery got the better of me. It sucks. The heat zapped my energy and my legs feel electric. Uhthoff's phenomenon. I remind myself that so many people out there with MS wouldn't have been able to do the things I have enjoyed today. And the day was great, just lacking other things I wanted to do. Missing out makes me cranky. My mantra is to stay grateful. It's hard sometimes, but I keep trying.

This rambling, unedited, unfocused post brought to you from the comfort of a chilly bedroom on a hot day.

xo

happy campers? Well, you won't be after this!

We are The Happy Campers and that was our welcome to this year's E2C.

I promised an update on the endurance race so here it is!

We left our hotel on an overcast morning and made our way to registration at a nearby fire hall. Once there, I kept overhearing the volunteers utter the same word - mud. I love the great outdoors so the idea of getting dirty doesn't faze me, but I wasn't sure that all day in the mud was all that appealing. It didn't put a damper on my excitement though, so we grabbed our t-shirts, maps, and directions to the Start and off we went!

Side note: my excitement looks much like my every day RBF. Internally it's all ferris wheels and lollipops, but little makes it to my outer expression.

The course was on active logging territory and the clay-clogged, bumpy, slow, 10 km ride down a dirt road showed us what we were in for - mud, mud, bogs, standing open water, windfall, long stretches of road, and trips through beautiful moss carpeting. I wasn't feeling overly optimistic about the "no bug" dance I had done that morning.

The E2C has a very energetic, supportive vibe, much like other races. Walking to the start area reminded me how invigorating it is to be surrounded by like-minded people. Waterproof hikers, gaiters, poles, gloves - everyone was geared to have a fun, filthy day. We dressed Abbey in her high vis vest and she was making friends at every parked car we passed. Vehicle hoods were covered in maps and compasses. Teams who had already done the gear check were huddled around their maps plotting their routes while we were busy talking serious snack strategies.

Because snacks matter.

If you didn't read my last post, we were two teams: Nancy, Abbey, and I were our own troupe, and two adult friends and their 10-year old kids were our accompanying gang. Super fun group. We made our way to the equipment check and showed that we all had the necessary items - compass, watch, matches, knife, whistle, and water. The volunteers were on the ball and made sure we had snacks for the dog too...as if we'd go anywhere without scooby snacks.

We had twenty minutes or so to wait for opening announcements. I am happy to report that unlike the last time we did this race, I wasn't attacked by mosquitoes and black flies. We took a quick look at the map so we could head to a cluster of controls and maximize our chances of early success. A quick "have fun, don't go near active logging" speech later and we were issued our punch cards and waiting for the horn. In the meantime, someone launched a drone. Now, you may or may not know my dog, but let me tell you, she ain't a fan of flying, buzzing things and the drone was no exception. Nothing like 10 minutes of straight barking at the sky to get things underway! Good times.

Then we were off! The crowd thinned pretty quickly and we slowed to make a more detailed plan and unhook Abbey. She's a great little hiker and leaving her on leash for eight hours was not an option. The only problem was that in the excitement, she ran around the side of a parked car and disappeared. We fanned out. Nancy went down one road. I went down another. Nothing. No Abbey. She has impeccable recall, but wherever she had wandered, she either didn't hear us or was too confused to find her way back.

Let's talk about panic for a minute. I have full on panicked very few times in life. Once in an MRI machine. Once when trapped behind a mattress moving it up a stairwell. Once when I thought someone stole my dog from the car. I could feel the beating, thrashing monster of panic trying to break free from its cage again. My dog is my constant companion. Yelling her name and not seeing her smiling face appear DOES. NOT. HAPPEN.

After a few minutes standing around yelling her name, whistling, and asking people if they had seen the dog, we agreed that our little team would stay handy and the others would get moving down the closest road to head to the first control point. We started off in another direction to see if she had skipped behind us unseen. My gut told me to stop and stay still, though, and after a few very long minutes, our friend Katie hollered that they had found her. Races are very exciting - what is a dog to do? Lots of people. Lots of noise. A drone overhead to get you all worked up. Next thing you know, you're unleashed and following the closest set of legs into the woods. She was sticking with a team of women and they must have heard one of us yelling because they asked our friends if we were missing a dog. She had been running up and down a path once she realized she was with Others.

The monster in my chest settled down and we were on our way to our first flag. Not the start I had envisioned.

The kids did all the punch card work and made the day that much better. I would totally do this event with children again. We didn't fill out the full 8 hours, but we covered a lot of ground and called it quits when our quiet group got even quieter.

I won't go into every detail here, but will give you the highlights and observations:

• No bugs = way better time
• There are a lot of snakes in windfall areas. My wife is deathly afraid of snakes. There was a lot of "don't come this way - go around!"
• Sometimes children ask "are we lost" a lot. We weren't. Mostly.
• Finding three flags in the first hour when you have littles and a dog is pretty amazing!
• Covering 18km with two littles is way impressive.
• Leapfrogging saves time. Backtracking does not,but provides opportunity to take a photo of those frog eggs you noticed on the way in.
• Frog eggs sometimes glow blue
• Having children on the team enhances the event. Their smiles when we'd find a flag were huge. Their stories were entertaining. Highly recommended.
• Raspberry bushes and wild rose saplings like to grab ankles.
• Sometimes half a kilometre feels like way more.
• Sometimes half a kilometre feels like way less.
• My daily 8 km walks made this event breezy. Even the high stepping didn't cause my hip flexors complaint.
• MS sucks. In case you had forgotten.

On the MS side of things, things went much better than last time. The sun popped out for 40 minutes or so and I did get weird in my head during that time, but it was manageable. Frustrating, but manageable. Nance kept the water handy and friends checked in on me when I was lagging. I appreciate that people are aware of how heat affects me and think to ask how I'm doing.

I did crash hard when wifey and I got back to the hotel. Something MS-y hit me and I was shaky and finding it hard to speak. It didn't last long, but I opted to stay in for the evening to give my body what it was asking for.

Nance rounded out the day with a trip to see her sister and famjam. The kids and moms hit Toys R Us and the pool. I sat on the couch/bed and gave doggins a massage as she slept. All in all, a great day!

Other notes from this road trip: 

Marshmallow guns are hilarious and I have to buy some for camping trips this summer.

Nance conjures the sea glass gods on every outing and finds amazing pieces.

My favourite beach is still my favourite.

Pills sometimes stick to ceilings. Don't ask.

I miss Saint John.

xo

Oh, and that woman was wrong. We will always be happy campers.

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

ahem

We're staying at a friend's place in SJ for a few nights while she's out of town. Nancy just left for a dinner and I took the dogs out through the back door as she was putting her coat on. While out in the side yard, I heard the front door close and hollered a "see ya! Love you!"

It was the neighbour leaving his house.

He seemed very perplexed.

vitis

It's National Drink Wine Day!

I alerted my wife to our patriotic duty via text this morning. I imagine her response was "We need a day for that?" but what I actually received was "I'm Driving - Sent From My Car" - a canned response with terrible capitalization that I simply can't get over.

Yes, that's a preposition at the end of a sentence. I like to live dangerously.

I hated wine when I was younger. Well, no. Hate is a strong word. My exposure to wine at an early age lead me to believe all wine was 1. white, and 2. sweet. I am not a fan of sweet whites, so I assumed I didn't like wine at all. Time went by and my dad became a bit of a connoisseur and I realized I actually really like wine. I still prefer red to white, or daytime wine, as a certain friend would say, but I enjoy a nice dry pinot gris on occasion.

Long gone are the teenage days of sipping cheapass spumante out of plastic water bottles, although I semi-remember those days fondly. I generally know which grapes I enjoy now and we have hosted a handful of wine tastings. I even have a wine book to write all my notes in, although, I'll admit its level of neglect is somewhere on par with this blog's. But, I have one! And there are h̶u̶n̶d̶r̶e̶d̶s̶ dozens of wines in there.

Living with MS means the thoughts of what to avoid consuming is a constant low level hum, but I tell myself it's a glassful of extra antioxidants. And it is. A delicious one.

On the MS front, all is quiet. And by that, I mean I have the usual cast of characters at play but nothing new worth mentioning. There's only so much one can say about numbness or leg pain and if I find it mind-numbingly boring, I'm sure you're all...

The wide open space here gives me every opportunity to be active. As extra incentive, I use an app on my phone to track all the fitness stats. Those, plus a single glance at my dog send me out in the fields to get my heart rate up. If we're not outside by 10 AM (aside from her early pee breaks), I get the wags of doom near my mug of tea. Cold nose pokes. Moans of "I'm so bored" even though she's a dog and can't speak actual words. Her tenacity is a fabulous motivator.

xo


P.S. I just got an end of day text from Nance "Dear wifey, I am so glad it is international wine day. Hitting the road for home now."

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