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

Happy World MS Day!

What better day to update than today?

With your help, I raised $1340 for the Halifax MS Walk. Thank you all so very much.

The walk was good. It was very well organized with lots of signage and plenty of volunteers. It was a sunny day in Halifax, but the wind (and a few water stops) kept the walkers cooled off nicely. Yellow dog was excited to be out in such a big crowd of people and seeing other dogs. It was her longest trek in months, and all the people + distance + heat = one tired pup that evening.

I have to admit, I was a bit confused at one point at the event. Nance tried to register because of this blurb on the MS Society's site:

On event day, all participants who have not raised funds in advance will be asked for a donation of $20. At this time you will also be asked to sign a participant waiver. 

Upon trying to give her $20 and sign a waiver, she was told by a volunteer that she didn't have to register. If she was walking with someone she sponsored, she didn't have to do anything but walk. Nance had already generously sponsored me, but it seems kind of silly for a fundraiser to be turning away money, doesn't it? It's not like they can keep the general public from walking along for free, so you'd think they'd take whatever funding came to the tables that day. 

No real complaints about the event, though. It was great to have a little posse there with me. I'm happy to report that I have never had to walk alone. I doubt I ever will.

All in all a great day - I got to see family that I don't see nearly often enough, and there was time to show kids that not all big dogs are scary and mean. 

These walks are always a bit emotional for me. People with MS can choose to wear a red participant bib and every time I'm at one of these events, I find myself wandering the venue alone to take a look at the red bibs. One thing I've gained from these events is the knowledge that we MSers are of all walks of life. It's a hidden disease for so many, which makes awareness that much more important. This year, a lot of the red bib wearers were young, fit, and looked vibrant and happy. Some walked with their children. Some walked with their parents. Every one of us had faced that same diagnosis phone call or doctor's visit. None of us were broken by it. 

Goal met!

Thanks so much for supporting me in the MS Walk. I am touched by the generosity of those around me.

Very fortunate.
xo
N.

awareness

Next weekend, I am making the trip to Halifax and have decided to do the HRM MS Walk while I'm there. 

I've recruited Nance, yellowfoot, and possibly one of my many relatives in the area to join me for the walk. [Sidebar: I asked her if she wanted to meet up for a beer while I'm in town and then did a switcharoo and asked if she wanted to walk 7 km instead. My bad. I hear cold beverages are refreshing after walks.] 

In preparation for the event, I shot up my fundraising flare yesterday and am nearly at my goal! I have 9 days to get the remaining $45, so fingers crossed! I have a fantastic support system and they/you definitely come through for me for this cause. I get all teary and overwhelmed when people donate on my behalf. I hope you guys know how appreciated your gestures are. See? Teary.

May month comes with a lot of MS thinkery for me. Campaigns are cleverly tagged with mottos about "raising awareness" because it's become gauche to say "raising money" even though fundraising is the major player in organized events. What does it mean to raise awareness? I have MS. What awareness am I working on?

As I'm writing this, my friend Brian got me closer to my end fundraising goal. I haven't spoken to him in person in over a year. Yesterday Mary donated, and I'm fairly certain we haven't spoken face-to-face since the mid 90s. My point? If I put my face out there publicly as "someone with MS" great people like this get extended the opportunity to help us. We are humanizing MS. Showing the world that people with MS cover all walks of life. Hiding MS is no longer an option. To get the help we need, we need to shine the light on that patch of darkness.

This kind of personal awareness helps create and maintain support initiatives and educational programs on the community level, not just find research. By connecting real faces - our faces - with the disease we raise the level of compassion and understanding among those in the non-MS population. Those people volunteer and become the backing we need to work on employment measures, caregiver support and an endless list of other services that are desperately needed. 

I can say for sure based on my work with an MS forum, that not everyone with MS wants to be known as someone with MS. Some see public blogs and fundraising as putting the focus on the disease rather than the person. There may be some truth in that, but I'm pretty sure my friends and family still see me as a real person and not just a walking creature of demyelination. For me, this is my way of saying that I have MS and people with MS are real people who don't always have the means to advocate for themselves. I don't think I'm doing anything selfish or all that courageous here. I just want change and sitting on my ass and doing nothing gets me nowhere. 

Even if I stumble, I'm still moving forward.

Shadows and light

MS is scary stuff. You can build up a wall of science and research to hide behind, equip yourself with the newest disease-modifying drugs, a good diet, and exercise, and try to safeguard yourself with objectivity, but when faced with MS symptoms, it's still scary shit.

The disease itself is terrifying - knowing my body is chewing on its own brain and spine isn't exactly comforting. Then I look at the available treatments and the lists of side effects make me want to curl into a tiny ball…around a frosty beverage…and take a nap. As much as I try to keep a positive attitude about having MS, sometimes an MS moment breaks that confidence and all that fear comes rushing in.

To paraphrase a well known MS advocate, we talk about "lesions", and "myelin", and "white matter", and "gray matter", but when you pull back all of the clinical terminology, you're left with "holes in your brain". Seriously people, there are holes in my fricken' brain! WTF?

One of the first anatomy lessons you learn as a kid in school is that your brain is the control centre - it's the CEO, the CIO, and the COO all in one. It's where we store our knowledge and where we safely tuck our personalities. Knowing that an unknown entity can eat away at the very root of what makes me me is disconcerting.

Once you receive a diagnosis, your career can be extinguished, your relationships can be dashed, and your dreams and expectations? Good luck maintaining those! Your initial annoying symptoms become a looming harbinger of what may come. 

So, how do people not crumble under the mountain of MS worries? Well, just like the course of MS in each person, our reactions differ as well. Some people run like the wind from the doctor's office, leaving behind all documents and results that may suggest there's Something Big wrong. They ostrich their heads into the sand and pretend everything is Just Fine. Like with everything, some people turn to religion. Others immerse themselves in science. The remainder balance it out with a little knowledge of the realities and try to just keep swimming.

All of us learn to take it as it comes. We develop a dark humour about it - injections, death, disease. We start fundraising to raise awareness or maybe to make ourselves feel like we're Doing Something. Anything. We become "People with MS" - a tangentially-connected motley crew who can nod knowingly when people talk about pitting or fatigue. We even have a fancy little abbreviation - PwMS. We adapt. Sometimes we flourish. We find ways to work with the changing circumstances. We develop ways to tell our friends and families that we can't do things because we're really fucking tired, as hard as it can be to admit sometimes. I tell Nance I'm out of spoons when I'm getting to the end of my energy for shopping. Those potentially extinguished careers, relationships and dreams? Handle them with care. We learn to communicate and adapt or we lose what's important.

Mercifully, the anticipation of what is to come is worse than the reality. My last MRI went swimmingly. The initial numbness I had went away. I'm still just me.

I was laid off not long after being diagnosed. The fear of never finding work again was very real but here I am with deadlines and responsibilities. That said, if anyone knows of technical editor/SME contracts, drop me a line. The freedom from the day in/day out allowed me to rediscover the person that I am. I have tried to connect or reconnect with parts of my personality that those holes have not touched. Note: I am not a great artist, but I have tried.  

If I knew when I was 20 that I'd near 40 with multiple sclerosis, I'd have been horrified. The idea that some day I may need a wheelchair scares the dickens out of me but then I see this kid racing up and down the road daily - zooming along in his wheelchair - off to buy lettuce and milk and whatever he needs. Sometimes things that burden us can also enlighten us and free us. Don't get me wrong, I don't think every dark cloud has that platinum lining, but some of them do. 

I've never understood the religious concept of being reborn but I do feel like the older I get, the more I drop all pretense at superficiality and end up saying, doing, and writing more truthful things. Maybe pretense is something that's falling out of those holes. I have found a greater understanding of who I am and I am honestly quite embarrassed by the unimportant things I used to worry or care about. 

I'm still afraid and pissed off when faced with MS symptoms but I'm still here and I think I'm developing a better me.

Be aware: May is MS awareness month

...so I may post fundraising links and whatnot.

I have no set idea of anything to talk about, so let's see what kind of rambling mess comes out, shall we?

First off, regular life business…(aka, Dog Ramblings)
Abigail has been cleared for more exercise! Swims! Walks! Let's hope it puts an end to the growing reactivity to every bump and whisper. Lately she's been barking at every opportunity. I've seen a little bit of progress this past week and hope for more in the weeks to come. I feel bad for her - she hardly sees anyone but us and come on - we're just plain boring. She did have little visits from a few friends popping by lately, so maybe that increase in exposure has been part of the increasingly good outcome. That and the new Freedom harness. We can't collar walk her yet, for fear of her lunging (see aforementioned reactivity) and neither of us has ever loved her EZ walk harness, so we bought the Freedom harness and it's fantastic! It doesn't change her stride or fit around her legs weirdly - it's just a great little body harness that she seems to like and feel much more comfortable in than the last one. 

Tangents, yes. I know. I ramble. You were warned. The surgeon said Abbey's leg has healed about 95% which puts her a little ahead of the game. The other yellow lab who had the same procedure the same day was also there for a follow-up exam and the surgeon said his leg is about 65-70% healed and that was fairly normal. Shocker - super dog makes impressive strides. Her weight is down slightly from our last vet visit during which we learned she had gained over 4 lbs in the 3 months of reduced activity, so it's nice to know the lower cal food is helping balance the lower amount of exercise. We can start building up her exercise again now (adding another 5 minutes every 3-4 days). At 12 weeks, everything should be back to normal and we can try some off leash walking and start introducing her to doggy friends again. This is only the 7 week mark, so we're being conservative and using a long lead on her waaaay before we let her off leash.

Are your eyes glazing over yet? I'm almost done with the dog talk…
So, as soon as we got home, we grabbed the long lead (30') and took Abbey for a little swim - her first in months. She was beyond excited. Grabbed her toy, ran into the water, ran out…forgot the point of fetch altogether, but we just let her do her thing to get the sillies out. Sidenote: people, if you're going for a little campfire next to a gorgeous lake, haul out your glass bottles. Tossing them into the fire and leaving the broken mess means people like me and many of my friends have to worry about our dogs stepping on it. 

Moving on...
Nance and I headed to the Fredericton market this morning to support Ange's new business. It was a chilly, wet day in Freddy, but worth the trip. We bought some delicious raw treats and a few muffins chatted with Ange and Greg some, and then wandered the city a bit. We had an hour or so to kill before picking up race kits for friends running the half marathon tomorrow, so we twacked. Had fabulous coffee. Walked the dog with her new sidekick, Sherman the sheep, of course. BTW, Fredericton marathon folk - your set-up left a lot to be desired - it was overcrowded, there was little direction, there was nearly a complete lack of signage for anyone not living in the city, it was terribly loud and far too warm in the main room - all in all, very surprising. I love race environments and the Blue Nose and PEI have spoiled me on what to expect, I guess. After pick-up, we headed on over to the poutine restaurant. We were both intrigued. I'm all for healthy eating, but now and then you have to try out something different and it's not often you find vegetarian poutine. So, I got a veggie traditional. Delicious for the first few bites, but I get near instant lead belly from fries and any type of gravy, so the joy was short lived. If you don't feel like you've swallowed an anvil when you've eaten fries, and you like poutine, I'd definitely recommend going there! Lots of options. 

The race environment took a toll on my head and I thought the grease might help fix it (waaay wrong), so I pretty much slept or tried my damnedest to sleep on the drive home. I started the day feeling groggy and struggling a smidge for proper word retrieval, a sure sign that I'm tired, so I'm not surprised that adding a lot of heat and noise created just the right blend for a migraine recipe.

Once I got home, I sought out my good friend Advil and settled in for a much needed nap.

Post-nap, I woke with one purrsome little guy tucked under my arm. I love this cat. He is one of the sweetest beings I've ever met. If you have followed the saga of Nik and Rings, you know that this was not always my spin on him. He used to attack me at every opportunity - territorial little bastard. But I adore him. Waking to find that he has snuck under an arm or behind a knee warms me - literally and figuratively.

Where was I? Oh, right. I woke from my nap and after I had a murmuring discussion with Ringo, I put my glasses on. Step one in the Get TF Up process. I blinked at the Roman blind in the window and noticed that the pattern was all blurry in my right lens. Between my own fingerprints and Abbey's dog licks I am forever cleaning these things, so I took them off, wiped the lens down, and put them back on to find…no difference. 

fawk. 

So, I am writing this with migraine-induced optic neuritis (gee, welcome back) in my right eye. The left is totally fine. The right is not. It's like manually focusing a camera lens. I look at something and I can sense the eye "dialling in" to become sharper. It is a completely bizarre sensation. I feel a little like the Terminator. 

Anyway, I'll consult the doc if it doesn't take care of itself in a week or two. There's nothing to do but wait or take steroids anyway, and I'm not big on anything that could potentially affect my bone density, so we'll see what time brings. At least it's only in one eye and the acuity is there after that initial readjustment. Bummed that the ON is back at all, but in the words of Pema Chodron, "It isn't what happens to us that causes us to suffer; it's what we say to ourselves about what happens." 

It's the wee hours of the morning now, so I'm off to give yellow dog a neck snuggle (I love the feel of her ruff) and am off to bed.

I hope this May month brings you all much peace and good health.