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Sunday, August 23, 2009
Saturday, August 15, 2009
Adjusting to New Realities
I find with MS that my health and ability to do the activities we often take for granted just changes more often. My definition of "normal" moves a little more than most. I always find myself realizing (or acknowledging) that what I can and can't do has changed. Once I figure out that things have changed, however, I'm able to appropriately adjust.
I had a relapse last year where I got really tired, wasn't thinking straight and got run down. Eventually, with the help of family, I saw it and took steps to adjust. It was an interesting time as the gradual onset of symptoms made it difficult to see that my reality had changed.
I think I am getting faster at adjusting and I'm getting better at adapting to changes in balance, vision, energy or what have you. I can't help but improve with all this practice.
There's a lot to be said for having a talent at adjusting to a changing environment. Arguably, it's one of the essential factors for life and career success these days.
Having MS gives me a competitive advantage of sorts. The flexibility it builds is definitely helpful.
Pre and Post MS Accomplishments
Some things I'm proud of accomplishing before being diagnosed with MS:
- Falling in love with my future wife.
- Graduating university with a commerce degree
- Being promoted to management
- Replacing the engine in a 1977 Mustang. I've included a picture of that one.
Some things I'm proud of accomplishing after getting diagnosed with MS:
- Getting married
- Having two beautiful children (my wife gets more credit for that, of course)
- Buying a house
- Running two marathons, one with a decent time, the other not so much
- Completing three sprint distance triathlons and one olympic distance
- Running multiple shorter-distance runs
- Choosing a job for fit rather than security
- Coaching friends on my approach to MS and lecturing on work-life balance
- Participating in the MS Bike Tour nine consecutive years
- Biking from Jasper to Lake Louise through two mountain ranges
- Getting a ChangeThis manifesto published
Now, here's a partial wish list. I think I can still do all of them, even if I get a little slower or less mobile.
- Take my kids to Disney
- Learn to play piano
- Take my wife to Mexico
- Make an unselfish mark on this earth
- Build a deck in our backyard
- Do a 200km plus canoe trip north of La Ronge
Fun with MS
Here's the manifesto: I believe having MS should be a positive, life-improving experience. It has been for me. To share this attitude and to spread this message, I will live this belief. I will also create MS celebrations with my family and friends.
I have better ideas than I have follow-through. I think some of my best ideas take a little too much in the way of sponsorship to take off as easily as I'd like.
Primarily, we create a theme and dress up for the bike tour. Our costumes have included - circa Adam West batman characters (The Caped Crusaders), cows (The Udder Team), 70's athletic apparel and disco outfits (The Boogie Knights), wounded soldiers (The Early Discharges) and a team that was rival to the Corner Gas theme (Team Wollerton).
Last year, we moved our team from Regina to Waskesieu. We still volunteered at Regina, though, and set up a "Pimp my Bike" station at our rest-stop. We put cards in the spokes, streamers on the handlebars... you get the idea.
This year, and soon to arrive on this site, we did a Superheroes theme in Regina. We built a life-sized superhero cartoon with the face cut out and took pictures. We're going to be emailing them to cyclists soon.
If you go to my first post on this blog, you'll see the idea behind The Year of the Nevin. A sponsor for the big raffle is still being sought.
I also had an idea for an MS/Regina Little Theatre fundraiser that I need to say out loud. I talked about it with the Regina Little Theatre board, and they were receptive, but I never found a sponsor for the actual fund raising.
Here it goes: A sponsor commits to paying $10 a head for people who come to an RLT show one night. The RLT charges their regular admission, perhaps with a donation to the MS Society. We advertise the show as "Pack the House for MS", especially targeting MS Society members. The result? Cheap goodwill advertising for a corporate sponsor, funds for the MS Society, a new audience and full house for the RLT and a fun night out for the audience. Perhaps I'm missing something, but I don't think I am. If you want to sponsor this, let me know. I'll do all the leg work, you stroke a cheque for $4,000 (max occupancy at the RLT is 400).
I have better ideas than I have follow-through. I think some of my best ideas take a little too much in the way of sponsorship to take off as easily as I'd like.
Primarily, we create a theme and dress up for the bike tour. Our costumes have included - circa Adam West batman characters (The Caped Crusaders), cows (The Udder Team), 70's athletic apparel and disco outfits (The Boogie Knights), wounded soldiers (The Early Discharges) and a team that was rival to the Corner Gas theme (Team Wollerton).
Last year, we moved our team from Regina to Waskesieu. We still volunteered at Regina, though, and set up a "Pimp my Bike" station at our rest-stop. We put cards in the spokes, streamers on the handlebars... you get the idea.
This year, and soon to arrive on this site, we did a Superheroes theme in Regina. We built a life-sized superhero cartoon with the face cut out and took pictures. We're going to be emailing them to cyclists soon.
If you go to my first post on this blog, you'll see the idea behind The Year of the Nevin. A sponsor for the big raffle is still being sought.
I also had an idea for an MS/Regina Little Theatre fundraiser that I need to say out loud. I talked about it with the Regina Little Theatre board, and they were receptive, but I never found a sponsor for the actual fund raising.
Here it goes: A sponsor commits to paying $10 a head for people who come to an RLT show one night. The RLT charges their regular admission, perhaps with a donation to the MS Society. We advertise the show as "Pack the House for MS", especially targeting MS Society members. The result? Cheap goodwill advertising for a corporate sponsor, funds for the MS Society, a new audience and full house for the RLT and a fun night out for the audience. Perhaps I'm missing something, but I don't think I am. If you want to sponsor this, let me know. I'll do all the leg work, you stroke a cheque for $4,000 (max occupancy at the RLT is 400).
MS, marriage and kids
My wife and I were dating when I was diagnosed with MS. We were pretty close to getting married and had already talked about it. I asked her to think long and hard about the worst-case scenario of me with MS before we got married, and I told her she should walk if she had hang-ups. She didn't, of course, but I've always thought that was unfair of me. She'd already been seduced by my charms. She didn't have much hope of being able to walk away :)
I won't say much about dating, as I didn't have that experience of meeting and determining when to tell. I suppose it would be much like what I do with employers, though. Once they can see the value I bring, they should know what the whole package is. I suspect single parents have the same issue. Perhaps we should ask one of them. If you're a single parent with MS, you've got a fantastic set of filters to weed out the undesirables.
Kerri and I were anxious about having kids. Of course, the odds are a little higher that they may contract MS, but it's nowhere near certain. The prognosis for someone diagnosed with MS today is also really positive. By the time they're of the age to get it, I'm thinking their story would be much different.
We were also worried about whether I'd be physically able to parent. There's already some things I won't ever do with them, such as playing basketball or teaching them to downhill ski. That's pretty small potatoes, though. We decided that parenting and the joy of children had a lot more to do with being present than being physically capable. We haven't regretted this choice for a moment and we never will.
I won't say much about dating, as I didn't have that experience of meeting and determining when to tell. I suppose it would be much like what I do with employers, though. Once they can see the value I bring, they should know what the whole package is. I suspect single parents have the same issue. Perhaps we should ask one of them. If you're a single parent with MS, you've got a fantastic set of filters to weed out the undesirables.
Kerri and I were anxious about having kids. Of course, the odds are a little higher that they may contract MS, but it's nowhere near certain. The prognosis for someone diagnosed with MS today is also really positive. By the time they're of the age to get it, I'm thinking their story would be much different.
We were also worried about whether I'd be physically able to parent. There's already some things I won't ever do with them, such as playing basketball or teaching them to downhill ski. That's pretty small potatoes, though. We decided that parenting and the joy of children had a lot more to do with being present than being physically capable. We haven't regretted this choice for a moment and we never will.
MS and the job
I'm in positions that require me to use my brain, not my body or my hands. I don't know that anything I say applies to someone who does physical labour. I think if I had a physical job, I'd be figuring out a transition to something that only requires that I have a brain.
I've always told my employers about my MS right away. When I was diagnosed, I went back and said "I've got MS. I don't know what course it will take, but I'll keep you informed. In a worst case scenario, you may need to make some accommodations. It never occurred to me to be anything but upfront about it. I add value, and they were going to want to keep me.
I've carried that confidence into each job since. I don't simply announce "I have MS," just like I wouldn't when I meet someone. Rather, if they opportunity arises, I definitely tell my employer. I'd rather have them aware (and responsive) than unaware. If they're unaware, they'll do the perfectly human thing and blame your tardiness, your slow response or your being different on some evil source, rather than your health.
I also don't mind if they know before they offer me a job. I'm not desperate for employment, I'm desperate for a meaningful, happy work environment. By law, I'm allowed to pull the "bait and switch" and not tell them about my illness beforehand, but I don't really want to work for them if they would make a different choice if they knew.
I've always told my employers about my MS right away. When I was diagnosed, I went back and said "I've got MS. I don't know what course it will take, but I'll keep you informed. In a worst case scenario, you may need to make some accommodations. It never occurred to me to be anything but upfront about it. I add value, and they were going to want to keep me.
I've carried that confidence into each job since. I don't simply announce "I have MS," just like I wouldn't when I meet someone. Rather, if they opportunity arises, I definitely tell my employer. I'd rather have them aware (and responsive) than unaware. If they're unaware, they'll do the perfectly human thing and blame your tardiness, your slow response or your being different on some evil source, rather than your health.
I also don't mind if they know before they offer me a job. I'm not desperate for employment, I'm desperate for a meaningful, happy work environment. By law, I'm allowed to pull the "bait and switch" and not tell them about my illness beforehand, but I don't really want to work for them if they would make a different choice if they knew.
Tuesday, August 11, 2009
How do you consistently do the injection?
People always seem surprised to hear that I've been on Copaxone since I was diagnosed and that I've given myself a daily injection for the last ten years. It's beyond routine now, so I don't even think about it, but I know some people can't stick with it. Why have I been able to?
The first injection was the most scary. It got a lot easier after that. After that first injection, in fact, I was a bit light-headed and had to lay down for a while. I had concerns that I'd had some strange reaction to the medication. Looking back, it's pretty funny... I know I was just experiencing anxiety. It's a pretty foreign experience for most of us to self administer an injection.
For the first period of being on Copaxone, my mantra was "My odds are better on this stuff." That was enough to overlook the inconvenience and sometime discomfort that comes with the medication. Statistics alone made it a given that I was going to do it.
After a while, say after a few years, I started having a confidence that the medication didn't just carry a probability of success. It was actually working for me.
After ten years, I'm wholly convinced that taking Copaxone has dramatically changed the course of my MS. If you're waffling on using a medication, especially if the hang-up is a mental block about poking yourself, do it anyway. After a while, you have to work to remember if you've done it that day or not. This brings me to a more practical tip, make sure you do it at the same time each day. My injection is now the last thing I do before I go to bed. It used to be first thing in the morning, which was fine, but evenings work better. Definitely that's just a personal preference thing.
This gives me a chuckle - In the first year or two, my wife used to ask me from time to time if she could "practice" administering the injection in case there was a day that I couldn't. My standard answer was that she could practice on the day I couldn't do it. I certainly have no problem giving myself the injection now, but if my wife wanted to practice a "refresher" injection every month or year, I'd still be getting the sweats.
The first injection was the most scary. It got a lot easier after that. After that first injection, in fact, I was a bit light-headed and had to lay down for a while. I had concerns that I'd had some strange reaction to the medication. Looking back, it's pretty funny... I know I was just experiencing anxiety. It's a pretty foreign experience for most of us to self administer an injection.
For the first period of being on Copaxone, my mantra was "My odds are better on this stuff." That was enough to overlook the inconvenience and sometime discomfort that comes with the medication. Statistics alone made it a given that I was going to do it.
After a while, say after a few years, I started having a confidence that the medication didn't just carry a probability of success. It was actually working for me.
After ten years, I'm wholly convinced that taking Copaxone has dramatically changed the course of my MS. If you're waffling on using a medication, especially if the hang-up is a mental block about poking yourself, do it anyway. After a while, you have to work to remember if you've done it that day or not. This brings me to a more practical tip, make sure you do it at the same time each day. My injection is now the last thing I do before I go to bed. It used to be first thing in the morning, which was fine, but evenings work better. Definitely that's just a personal preference thing.
This gives me a chuckle - In the first year or two, my wife used to ask me from time to time if she could "practice" administering the injection in case there was a day that I couldn't. My standard answer was that she could practice on the day I couldn't do it. I certainly have no problem giving myself the injection now, but if my wife wanted to practice a "refresher" injection every month or year, I'd still be getting the sweats.
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