Someone Like Me

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). 

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 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 10^th 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. 

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It’s always frustrating when you try talking to even your closest friends and hear “I understand” when you KNOW they have no idea what you’re going through. You try and be thankful for their ear, but sometimes you really need someone to understands EXACTLY what you’re going through.

 A few months ago a local employee of the MS Society organized a get together for about 3 of us girls to chat and just talk about MS and EVERYTHING.  In December, I emailed this girl and told her that I wanted to have a group of ladies over for a chat that she was free to send the email around. We managed to get 7 girls here – we had an ice-cream buffet and just drank a bit of wine and coffee, it was SO perfect. 

 The great thing was we all had that common “bug” in our lives … we all had MS.  Some of us were 30, others were 24, others were 40 – it was so great. (more…)

Recently I’ve been talking to my sister-in-law about something she firmly believes in, “Body Talk”. It got me thinking, maybe I should try this and see how it goes? I had my 1^st session last week here in Saskatoon …. I had mixed feelings (but good ones).  It was useful, informative, relaxing, and kind of eery how exact it was. 

Body Talk is a non-invasive technique that helps stimulate the bodies own ability to heal itself.  As most of you know, I recently went off my medication (by choice) and I’m not saying that ANYTHING I try will CURE ME … but why not help me feel like I’m doing something productive?

My Body Talk session involved me laying there for about an hour while the practitioner asked my body questions, and my body responded in different answers.  (more…)

The best time of the year is coming – CHRISTMAS!!!! As great as Christmas is, does anyone else struggle with Christmas?  I absolutely love the holiday and being around family but I find it VERY hard to remind myself that I need rest … I feel disgusting if I drink … I feel disgusting if I eat too many snacks and that I HAVE TO stay on my routine. 

 I get so caught up in the holiday cheer that I forget that I have MS (which is a great thing I’m able to do that), but I run myself down. 

 This year my Christmas will be tied with mixed emotions! I’ll be happy to remember my engagement last Christmas, but am quickly reminded of spending a lot of days in the hospital last Christmas as well. 

 However, I have come up with a few tips to help me keep myself balanced:

• Always have nuts handy so that I don’t snack on all the chips and cookies around me
• Always carry a bottle of water around with me to avoid drinking wine or anything else that will make me feel gross the next day and set me back
• Suggest to others to take a “post-meal” walk so I don’t start feeling sluggish
• Take some “time-out” from family and book a massage for myself over the break. It’s going to be a nice way to just wind down and enjoy some peace and quiet. 
• Suggest to family or friends that you take turns cooking meals (I find my diet suffers the most over ANY holiday)
• Be the one to host the Christmas party this year, that way you have a bit of control over what is being served to eat or drink
• Volunteer to make the snacks (granola, etc)

 The hussle and bussle of Christmas can be very overwhelming … and exhausting … it’s important for each of us (healthy or not) to keep our body in a routine of some sort, but still manage to enjoy the season!!!

 How will YOU keep yourself in a routine?

 WOW!! WOW!! WOW!! If I have ever felt “useful” and that I was making a difference with my MS, and hopefully others – I experienced it in August!

In case the month of August wasn’t fantastic enough with my new house, and becoming a wife – I had the privilege of being the A & W National MS Inspirational Champion.  Words can’t describe how amazing the experience was.  I had a chance to see amazing people I have met throughout my 8 years with MS, and I was fortunate to meet more amazing people!

Travelling around Canada and speaking in different locations really taught me something.

No matter how old or young we are, what sex or race we are, what we believe in – we all want the same thing and are fighting for the same thing … HOPE … our hope gives us a future and we all share that common goal.  No matter how different our stories are, we all understand each other in one way or another.

The MS staff, the crowd, the support in each city was amazing – I remember the last speech I gave in Vancouver, I was standing there in shock and awe with all the smiling and supportive faces I was getting back – and no one even knew me. 

This illness is constantly challenging me in new ways, and constantly rewarding me in others – this was one of my greatest accomplishments in life, and I can’t thank the person enough who nominated me. 

I hope that by traveling around Canada and sharing my story, my motivation, and my dreams for MS – I managed to help even just ONE person in each crowd.

Of all my accomplishments in life, I feel like finding my fiancé has been the greatest one.  Losing your last name (which is my choice) comes with a lot of feelings I didn’t expect – am I still “me”? Will people know me on the street? Will people forget who my siblings are? Will they know who my parents are? Will I love my sisters-in-law that married into MY family? Will people just assume my maiden name is my married name? How many cards do I have to change? Do I have to change my email address? The list goes on and on…

The next time I blog, I will be married to the most amazing man, and I will know all these questions won’t matter… and I’m still the same old person I always was… except now I’m bound to my other half… a time to say goodbye… and a new beginning.

How many times have we all had an attack and been told “relax, don’t stress”.  How easy is that when you can’t walk? Have no vision? Are throwing up? Can’t write? Throw a ball? cook a meal? Not too easy, am I right?

Well what about when it’s the GOOD kind of stress? My fiancé and I are building a house right now and our possession date is NEXT WEEK (august 1^st) – we have counter-tops to go in, appliances to be delivered, good stress right? Well throw our wedding on-top of that, we get married August 4^th in another town other than where we live (Saskatoon).  We have guests that are expecting to stay at our house (love them to death), but we aren’t even in our house yet. It seems I’m not even married and the questions start multiplying “when are you having a family?” the thought is a kind one, but a stressful one. To put the icing on the cake; I just bought into a shoe franchise! (more…)

The lessons I have learnt through my diagnosis seem to be never-ending, and I love it.  I used to search for a “why me” answer, and never got one. FINALLY after 8 years I’m starting to see my answer and am re-thinking my questions – why not me?

Recently, one of my good friends lost her mother to a battle with a brain tumor.  Naturally I was sad for my friend, but the other side of me kept thinking … that could have been me. All I wanted to do was cry the whole funeral, and half of my emotion was due to me feeling terrible that I think “MS is terrible” when it could be SOOOO much worse.

I’m alive, I’m healthy, all my symptoms go away periodically, and I have amazing people around me.  I’ve really had the opportunity to know so many amazing people that have passed on, and each one of them has made me realize “MS just really isn’t that bad” … it sucks … but it’s not the worst …

Watching someone else go through a battle is such an eye opener to your own battle, and I think more of us need to step back and watch someone else’s battle …

Ok maybe not 50, but in the last 2 years I feel like my body has aged drastically.  Only now (April) do I finally feel I’m getting back to my “old self”.
Let me be clear that my “old self” is not who I was 8 years ago, but who I was 2 years ago before I started having a monthly regular attack.  My definition of “normal” has changed, and I’m not even sure I have a definition anymore?! Oh the joys!

However, one thing is certain; these last 8 years of my life have taught me more about myself than I ever thought possible. I have faced things with MS that I never thought I was capable of handling and have come out on top.  I have realized who my true friends are and I have realized that you never can tell what’s on the surface of someone. Over the course of these 8 years I have changed big parts of my life; “diet/exercise/social/aspects/volunteer/friendships/work”.  A wise woman (my mom) once told me “you’re not giving IN TO the disease, you’re finally learning how to take control of it”- she is my inspiration and she always has something wise to say to pick me up when I fall.

Now I know how it’s possible that these 8 years have flown by … my support has never turned their back on me, and have been there every step of the way ….