At times I find it difficult to explain what MS is, its impact on my life, symptoms… Friends are always asking about how MS affects me, and are confused when I say things like “I’m having troubles seeing” as they reply “clearly you can see something, you aren’t blind”, other times its difficult to explain MS at all. But perhaps the most difficult thing to explain, and for other people to understand is the constancy of MS; its impact on daily life, and how I have to be aware of it on a day to day basis.
I’ve developed a few metaphors that I sometimes use to explain MS to other people. I think of life as a juggling act, with work, family, and friends all being separate balls. But I have MS so a couple extra balls are thrown in there. The diagnosis of course is a ball, and any symptoms I’m currently experiencing I also have to juggle. The idea is of course to keep them all up in the air at all times but at times there gets to be too many balls and they all come tumbling down.
I sometimes think of relapses and remissions as a balancing act. If rest, and exercise and every other factor are equal or less then the MS disease then I’m in remission, but if something either explainable or unexplainable gets out of balance then I’m out of remission.
But perhaps the best metaphor I have to explain life with MS is one that just dawned on me recently. It is that of a labyrinth game. You know the maze game that you twist two little handles and direct a marble through a series of twists and turns trying to avoid running straight into walls, or falling down holes.
I love to travel – apparently no one else in my family does – but I’m determined that this year we’ll take a family vacation. My oldest is 6 years old and we’ve yet to take a vacation as a family.
I remember, at the ripe ‘ole age of 11, my parents took us on a road trip to Florida; think 24 hr drive, a few kids, a hurricane, 2 days of sunshine, and Disney World. We had a blast…. I’m not so sure my parents did though!
So off we go to Niagara Falls at the end of May. We’re taking my mom with us cause who travels without their best friend?
Will it be easy? No. Will it get complicated? Maybe. We’re also traveling on a budget. Yikes. I’m still wondering how we’re going to fit a wheelchair, a double stroller, all our luggage, 3 kids (2 in car seats!), and 3 adults in our 7-seater van. AHAHAHAHHAHA!
I’m laughing now cause lets face it, it won’t be funny on the road. I can the taste the ‘are we there yets’ and the ‘I have to go pees’. My dear, loving, thoughtful husband will tease the 6 year old – she’ll get angry at him, I’ll get angry at them. The 2 year old might sleep a good way through and will keep us all on our toes. The baby…. who the heck decides to go to Marineland with not only a mother in a wheelchair but a baby and a toddler in strollers?????
This is about a woman who I live for. The one person that keeps me grounded. She is the one that reminds me to be the best that I can be.
I had always heard “I feel so much better in the heat” from other MS patients, but never me – I hated the heat. My involvement with outside sports decreased, time spent laying in the sun vanished, my love of bathing suits increased, even walking outside in the heat was a challenge …. Until Mexico came.
After 9 weeks of sick leave, my husband and I chose to take that opportunity to go on our honeymoon (we got married in August). I was excited, but more so scared and nervous. I remember flipping through magazines and seeing all the comments:
“ the sand is so white and fluffy”
“ lots of walking paths”
“plenty of time for beach volleyball”
“ the weather is beautiful in the Mayan, so hot”
… translation … DISASTER FOR SOMEONE WITH A CANE!!!!
I was determined I wasn’t leaving for Mexico with a cane, the thought of walking along the beach and sinking in the sand each time terrified me. While J was excited to run around in board shorts and soak up the sun, I was dreading being a sweaty mess and having everyone stare at me in anticipation of when I would trip or fall backwards (I’m sure no one WAS staring at me, but in my mind …everyone was).
The MS Society runs a free summer camp for kids living with MS ages 8-21. There are still spots available! The camp and travel are free for Canadian campers. We also have spots for campers outside Canada. Check it out at www.mssociety.ca/camp and watch the video! This year it’s in Alberta from Aug 17-24.
We’re also looking for a male Peer Support Leader for camp. This is an amazing volunteer opportunity for someone in their 20s or early 30s living with MS to be a role model and support for campers.
Contact firstname.lastname@example.org for more information or for an application for either opportunity!
Love, life, AND MS? This past year has taught me that they can in fact coexist. I’m Maria, I’m 20 years old, and I have MS. I was diagnosed at the age of fifteen, and hadn’t quite recovered from the shock until recently. When they told me, you have MS, I honestly thought my life was over. I had nothing left to stand on. I had spent the past fifteen years power planning my life down to the last detail. Being told I had MS made me feel blind and lost. No one would ever love me, I was no longer ‘flawless’, and I had no future. I quickly learned otherwise.
When I was seventeen I got an internship for IBM, and by the following summer another one through Intel. I went onto to study Construction Engineering at Oregon State University, and the sense of pride within me that I had lost with the diagnosis was slowly but surely regained. As for ‘love’, growing up I didn’t have a solid idea of what love was. My parents were either fighting or walking on glass, and TV shows were scripted, aka, the Bachelor (sorry ladies but seriously, it’s totally scripted). I dated in high school and college but never really connected with anyone. I started to think it was embedded in me, and that since I never saw what a true functional relationship looked like, I had nothing to go off of. The summer before my sophomore year, however, I started talking to this guy.
On Saturday, March 16th, 2013, I spent the entire day at Whistler Olympic Park, which was home to the Olympic and Paralympic Cross Country Skiing and Biathalon events. My friend Andrea asked me to come and be the photographer for the Skiing is Believing program and I jumped at the chance. I adore Whistler and I was more than happy to support the important work she and Paralympian Courtney Knight are doing.
The Skiing Is Believing program introduces people with disability to cross country skiing. Paralympians, their coaches and team of dedicated volunteers teach people with a variety of physical and sensory disabilities, (wheelchair users, amputees, people who are blind or visually impaired, people with cerebral palsy, etc.) as well as their friends and family to ski.
Here’s a peek at the program in action. That was Andrea talking about the program!
I spent the morning capturing various aspects of the program. It was a bit of a challenge because the weather was absolutely not cooperating-we had a combination of rain, rain mixed with slushy snow and then outright snow. I’d planned ahead though and brought an umbrella, as well as a Ziploc bag, some duct tape and scissors so I could McGyver a way to keep my camera dry. It was a good thing I did because by the end of the day, pretty much everything I owned was soaked. It pays to be prepared!
The difficult parts of life are like a fight. The lifetime boxing match we all go through.
The first 24 years of my life were a challenge but it didn’t ever feel like a fight. Then MS came along and it was like a punch from out of nowhere that knocked me on my ass for years. But I got up. I fought. And I won the next few rounds. The fight wasn’t easy, but every round I kept coming out on top.
When heart surgery came around, it was easy because I could prepare. I knew how to fight it and it didn’t knock me down to bad. Eight weeks in bed with a month of “why me’s?” and I was back to my normal self. The only difference was a massive scar on my chest.
Then my brother died and it was an uppercut that floored me. Right now I’m in the middle of getting back up and it’s really hard. There is no way I could have prepared for this punch. It’s the hardest one I have ever felt in my life. I’ve been kind of absent from everything for a while because I’m still trying to get up. The main thing is, I’m getting up. I am still fighting. I miss my brother so much. I am trying to get strength from him to get back up and get on with my life.
None of us can prepare for the big hits. It’s how we handle ourselves afterwards that shapes us into who we are.
I miss you Trev.
It’s quite marvelous how easily my moods can swing from one continuum to the next, like my MS has gotten herself a rope and is playing monkey games with my head, swinging from one nerve cell to the next. There are some things that just bother me about my MS. Ever since going to university in 2011, I pride myself on showing off my smarts. I expect a lot of myself, a bit too much, and anything less then an A, is not okay in my books. I’m known in most of my classes as the achiever or the know it all, that I’m just really smart and it’s just not fair to the other kids. I find this downright hilarious because if they had seen me before, I was doing drugs twice a day. I was the kid people said would be dead by 20. And now here I am. I guess on the bright side, I am both book and street smart.
Then you have my disease. No one would ever guess that I had MS. My friends are all high achievers, either in medical school/law school/business school/with masters under their belts/organizations on their belts/ and so forth. They are not the people you share your weaknesses with. Even though I go with the perfect act, I am very aware of my fatigue, of the slight tremors present in my left hand when I write/type and the headaches, which are all signs of my MS screaming because she is simply dying for my attention! The friends I have told, they laugh it off, they don’t believe me, they call me a bad person for “pretending” I’m disabled. It’s only when I shove my needles in front of their face do they stop laughing. It’s only when I put the CD of an MRI scan I had gotten from a past research study, which shows my countless lesions, blaring bright on my laptop screen, do they stop smiling. Then they either treat me like I’m infected or pretend the past 15-30 minutes never happened. Tada, magic!
This week I had gotten enough…
Going on 9 years with this stupid illness and I always manage to get a violent slap in the face to bring me back to my senses.
On Jan 10th I went to sleep eating way too many cookies that I had just baked for my cousins baby shower that Sunday. When I say “Way too many” ok it was only 3, but that’s MORE than I should have had. I felt like my head was starting to hurt, but getting a headache was nothing new for me. I woke up at 2:30am thinking “ugh I better call into work sick this morning, I don’t feel good” and fell back asleep.
I woke up that morning (Friday) at 3am and made a mad run to the bathroom. By 9am I was laying flat on the floor in my underwear so I could feel how cold the floor was (let’s keep in mind here in Sask. It was -41), it felt amazing as I attempted to cool my body down from what I thought was the flu. 9:30am I quickly realized “this is NOT the flu”. Our hospital isn’t the best hospital to be at over the weekend, so I figured I would give it the weekend to see improvement and if I wasn’t better, deal with it Monday.
By the time Monday came I was 100% in a relapse, with symptoms I had never experienced before?! Vertigo & vision loss are common for me, no panic there. Where did this “frostbite” feeling come from… EVERYWHERE on my body!!??
When I saw my neuro that afternoon he took one look at me and admitted me into the hospital for the week.