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

Winter is coming...

We've been winterizing the house and I am really hoping all this work will make a difference in the electric bills this winter.  The big bonus of winterizing is we also do a "fall cleanup" at the same time. Ahhhh, decluttering!

So far we've gutted the porch closet, refilled it with summer love, and shrinkwrapped it. It's breezy out in the porch, so closing off the closet and window are necessary evils. Ultimately, I'd like to get someone who knows house-y things to tell us wt-heck we can do out there longterm to help with efficiency. I can see underneath there from the front stoop, so I'm guessing there's be a relatively easy way to insulate. Anyone? No idea. Must consult the fathers for suggestions.

Happy first day of autumn, friends. We've already cleared the lawn of leaves once, and the grass is again buried beneath them, so the seasons of blankets and wool socks approacheth! Whooo! Many dread our long winters, but I generally experience fewer symptoms through the cold months, so I welcome the white weather. Yeah, it's a lot of early morning and late night snowblowing and shovelling but I'll take it. 

But first, the season of colour! I am so excited to be heading to Newfoundland for a little trip during fall! I have lived in four provinces and one state and there's nothing that compares to the oranges, yellows, and reds that cover the west coast of Newfoundland in autumn. Love. 

It's gearing up to be an unusual trip for me because the dog, while recovering fantastically, is still not fully healed. That means no stairs, no slippery surface floors (hard to avoid, even here in our own house), and zero crate time. The specialist told us from the start that if we absolutely HAVE to crate her, to limit it as much as humanly possible. So, our babe has been uncrated since the first surgery. I like to keep her used to the idea since there will undoubtedly be times when we'll have to rely on the crate, but she's enjoying her freedom and there seem to be fewer occasions when a crate is warranted. Yellow tornado is growing up.

I always feel like I should include a note on how I'm doing for the fam who don't ask. On the symptom front, no real change. Still symptomatic. It's no better but no worse. 

Now, if you'll excuse me, I have sweaters to sort.

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.

My words are gone to the darts...? Whatever.

Hidely-ho!

It's been a pretty quiet summer with lots of house arrest while the pooch recovered from two knee surgeries. That put me home quite a bit, but I managed to complete the August geocache 31 in 31 challenge - a cache a day every day for a month. I think Nance and I ended the month with over 50 finds, so all in all, a neat experience. Not one I'm eager to repeat since you're forced to work around regular life and some days you find yourself using your 18 spare minutes of the day to stand in the pouring rain, looking for a tiny magnet hidden somewhere on a giant memorial gun, and wondering why the heck you're not at home having a nice glass of wine. More fun than not, though.

We've been caching with renewed interest this summer, and I've brought my total finds to over double what it was at the start of the year. In addition to slogging around town looking for tiny hides, we found a few in PEI and Quebec so it was neat to grab those provincial profile souvenirs.

You'd think that the forced caching would mean I've been more active than usual, but when you have to get a cache a day, you tend to pick sure things - the ones you know won't take hours to find. So, all in all, I've been less active and my body is very aware of it. I've been low level symptomatic for a bit now (random numbness, limbs falling asleep much easier than normal, very heat intolerant, blah+blah), so I'm back on the activity wagon and have been trying to get moving again. It'll be that much easier once we get the go ahead to increase the yellow hound's activity level too. Hopefully we'll get the green light late this week! Fingers crossed. 

This whole "dog destroyed 2 ligaments" summer has had silver linings and the biggest plus has been that Abbey is loving being handled more. With months and months of massage, range of motion exercises, ice and heat compresses, she has learned to loooove being rubbed. It may sound strange for a dog, particularly a goofy lab, but she was never one for physical affection and we had to clicker train her into accepting head touching when she was younger. So, when I'm sitting next to her and she goes belly up and whomps her massive tail as a request for tummy scratches, I have to admit that my heart gets a big squeeze. 

In other life news, work has been good. Busy. Challenging. New perspective. Being symptomatic hasn't had an effect on that side of things, thankfully. I'm not sure how I'll cope if and when that ever happens. I know cog fog (receptive dysphasia - difficulty in comprehending communication) can be a career killer for many with MS, but I have none of that unless I am completely exhausted. I do, however, have a sprinkling of expressive dysphasia from time to time. If you're not familiar with it, it's this odd little quirk (actually brain damage, but let's call it a quirk for the sake of my own comfort) that makes me say words I don't mean. I may try to say "pencil" but "table" comes out. Or I may ask Nance if she's seen my "handle" when I mean "brush". The dog's "tail" is a "wing". (Sidebar: can you imagine if lab retrievers could fly?) It's a really weird feeling, but I can see the humour in the situation most of the time and N will joke about it in a way that works for me. It mostly happens with single or double syllable nouns. It has happened a few times when out with friends and I haven't bothered to explain it yet. It usually gets a laugh and is dismissed. I'm not sure if anyone realizes it's an MS thing or not and I really don't care to make every slip up an education session. If you have noticed my word replacement, that's what's going on. I can honestly say that I mind it a lot more on the phone than in person. For some reason, it's easier to let it go and laugh about it when the listener is in the room. Thankfully, I don't spend a lot of time in phone communication. It doesn't happen when I type, so I'm lucky in the sort of work I do.

Anyhow, work has been good. Life has been quiet, but good. I'm still chugging along on Avonex injections and they seem to be working okay. I'm another year older and am still feeling great, just don't be surprised if my phone rings and I ask you to pass me the remote.

I can.

This woman ran a marathon every single day for a YEAR. On the final day, just for funsies, she ran two!

Oh, did I mention she has MS?

http://cphpost.dk/sport/marathon-woman-crosses-finish-line

Tangentially related, there are many great things about the person I share home with but one of the greatest is that she doesn't let me say no to exercise. If I'm kinda tired or don't really want to, I don't get a look of disapproval or some elaborate attempt to change my mind - she chooses the only approach that works for me - she ignores me. She goes to the closet, puts on her sneakers and stands there until I'm ready to go too. I could be a stubborn ass about it, but I know that "I don't want to" is not a good reason and I'd only be mad at the missed opportunity later in the day.

So, while I'm no Annette Fredskov, be active with me. Come geocaching. Let's go on a hike. Grab a leash and help me walk the dog. If there's snow on the ground, bring your snowshoes. Life's a journey and journeys aren't all about sitting still.

Mind the gap

"You don't understand! My family doesn't understand. My friends don't get it."

I hear about this all the time in the MS forums I read and moderate. There is a disconnect between those with MS and the people we love and that gap can cause the breakdown of our most prized relationships. Where is the short in the cord? Communication, of course. 

In many cases the people around us have been healthy their whole lives. Colds? Sure. Maybe some itchyashell hayfever, the odd flu, or other aches and pains. Granted, some have faced the fear of having cancer. But all in all, most people don't have experience living in a body that doesn't work as expected. It's pretty specific to MS and autoimmune issues. So, how do we let them in? How do we help them understand the world as we see it? Or, on the far end of things, how do we allow people to see past the big red billboard of disability that has long been associated with MS?

I think the answer is in compassion. Not everyone else's compassion towards my own personal situation - that's a bit obvious, I guess. People traditionally try to show compassion to those who are seen as sick or weak. Otherness. Rather, I'd like to find a quick route to compassion for the people around me who don't get why some days I'm smiling and comfortable and at other times it takes a while for me to warm up. 

If we, as people with MS, want others to be able to understand, we have to take the same steps towards understanding  After all, it's not anyone else's fault they haven't had to work through getting their legs to cooperate and not jerk in the wrong direction like a drunk Disney character on stilts. People can't relate when we don't let them in.

If we can refocus our own feelings of being devastated when others don't understand, and stop indignantly insisting that others should get it through osmosis or black magic, we can communicate more clearly and with purpose. I can tell you from my own experience and the experiences of those around me that when people don't get it, they feel impotent and that cut off can build rifts and isolation on both sides. Taking a few moments to explain why you can't make it to a bbq extends more than information; it offers a very clear connection rather than a mumbled message that leads to confusion.  

Subtlety isn't always helpful and stating what may not be obvious to others takes some of the responsibility off of those around us. Instead of feeling resentful towards others when they don’t face the same physical or cognitive issues, or disgruntled over their lack of understanding, hopefully, I can redirect my anger and conjure some compassion towards them. With a little luck, the magic words needed to let them in will stem from there. 

“…feelings like disappointment, embarrassment, irritation, resentment, anger, jealousy, and fear, instead of being bad news, are actually very clear moments that teach us where it is that we’re holding back. They teach us to perk up and lean in when we feel we’d rather collapse and back away. They’re like messengers that show us, with terrifying clarity, exactly where we’re stuck. This very moment is the perfect teacher, and, lucky for us, it’s with us wherever we are.” 

― Pema Chödrön