Thursday, 26 May 2016

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.


Wednesday, 25 May 2016

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 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. 


Sunday, 15 May 2016


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.


Thursday, 12 May 2016

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 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.


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