Everyone always talks about having work life balance but as someone who lives with a sometimes disabling disease, the MS life balance needs to be discussed.

We all try to put so much in everyday that finding balance is often difficult. We need to find time in a day to work as well as the time to spend with family/friends, participate in hobbies as well as time for ourselves to rest if needed. Being mindful of MS is unfortunately something that always has to be on our minds.

Things like mindfulness, meditation and yoga can help to shift our focus from the distractions of everyday life, as well as the constant reminders that we have MS. Breathing and yoga practices can help me to acknowledge where my body might be, and accept and move toward a more balanced existence. If those things mentioned above are truly not your thing than doing activity that you enjoy will definitely be helpful. For me I love kayaking so I find that helps me refocus and escape from MS.

I recently had the opportunity to hear Dr. Ruth Ann Marrie speak about her research on the influence of comorbidity factors on MS. That brings in the fact that’s other things can affect MS that we must be mindful of. Adopting positive healthy behaviours can definitely put a person with MS on the right track.

Here is a link to Dr. Marrie’s research
— Read on mssociety.ca/about-ms-research/about-our-research-program/research-we-fund/symptom-management-and-quality-of-life/comorbidity-cognition-and-multiple-sclerosis-c-coms

I just realized my last post was lacking a Zissou picture, so let’s change that.

Still smiling,

C

This past weekend I had the pleasure of attending the first ever MS Can Be summit. This event brought young adults together who have MS or have a family member or partner with MS. This is the first time that so many young adults gathered to discuss the future of MS and what can be done about it. When I first heard about this event I was instantly interested in attending and honoured that a thirty something person like myself was still considered as a young adult. It’s an awesome feeling when while living with this sometimes debilitating disease makes you feel like you are a 90 year old some days, no offence to the 90 year old out there who are rocking it.

This event involved so many truly inspirational people who fight the MS monster everyday. Many important topics were discussed and I made friendships that will last for years to come and I know that I’m not the only one. With the advantages of social media even though we are spread all across Canada we will be able to keep in touch.

We were lucky enough to have the amazing MS Warrior Aaron Solowoniuk, drummer of Billy Talent as one of the organizers and presenters.

Below I have included the lyrics to Billy Talent song “This is How It Goes”

Everybody is tired
And poor and sick of trying
If you see me on a corner
Will you stop or will you splash me?

Take a look at what we’ve become
Nothing more than silhouettes of
A pretty family on a postcard Picture perfect, I don’t want it!

So I hold my breath till my heart explodes
Cause this is how it is and this is how it goes
You can steal my body but you can’t steal my soul
Cause this is how it is and this is how it goes

Shitty weather, bad timing
Lucky penny glued to the ground
Dirty look from total stranger
Hope you get lost and you’re not found

Take a look at what we’ve become
Nothing more than silhouettes of
A pretty family on a postcard
Picture perfect, I don’t want it!

So I hold my breath till my heart explodes
Cause this is how it is and this is how it goes
You can steal my body but you can’t steal my soul
Cause this is how it is and this is how it

This is! How it! It goes!
This is! How it! It goes!
This is! How it! It goes!
This is! How it! It goes!

So unscrew my head and rinse it out
Polish my thoughts, turn into doubts
Unscrew my head and rinse it out
Polish my thoughts, turn into doubts
(Turn ’em into! Turn ’em into doubts!)

So I hold my breath till my heart explodes
Cause this is how it is and this is how it goes
You can steal my body but you can’t steal my soul
Cause this is how it is and this is how it goes

The words of this song definitely resonate with me.

All of the topics discussed during the weekend will help all attendees as the voice of the future of MS to initiate positive change.

Still smiling,

C

Now calm down it’s not that type of blog. The F word I refer to is Fatigue. However, I often refer to fatigue with the other F word in front of it.

First of all what is fatigue.

It is extreme tiredness resulting from mental or physical exertion or illness. It is NOT THE SAME AS BEING TIRED.

When you are tired you sleep you feel better, unfortunately fatigue doesn’t work like that. I’m in a state of perpetual exhaustion. Just imagine what I could do if that wasn’t the case.

The fatigue you get when you have MS can be one of the most disabling symptoms.

It is the most prominent MS symptom that I face on a daily basis. It is also one of the most common symptoms that prevent those with MS to work full time jobs.

On Monday when I woke up and knew it wasn’t going to be a good day so I thought I guess I’m working from home today but then I got up and realized I couldn’t even do that. Think of how you feel with the lack of energy when you have the flu, that’s the only way I can describe the feeling to to someone who has not experienced it.

The fatigue was so bad I slept all day not even leaving my bed. By Tuesday noon I was actually feeling a bit alive so I could do some laundry and a few things around home although that was even a challenge and many breaks were required.

Fatigue is the reason why I don’t work a full time job and why I haven’t done so for the last 5 plus years.

Thought it was time for a Zissou picture to keep you interested.

Oh… and I forgot to mention that along with the fatigue comes insomnia. Just in case I wasn’t exhausted enough and now I can’t sleep. MS is great isn’t it. I think I want to say the other F word now.

Still smiling,

C

This post is coming out a bit late this week due to the not so nice visit from hurricane Dorian which knocked out my power and subsequently my internet. I was one of the lucky ones who only lost power for 24 hours.

Here is Zissou during the storm. He was not a fan of the wind.

In many ways a hurricane is like MS. It’s unexpected, disturbs your life and can be extreme. For both major damage can occur that can take months to repair, even if it can be repaired.

Stress can trigger symptoms in MS and going without power worrying about food spoiling can definitely be stressful.

With MS symptoms can come on without warning and they often do. Here are some symptoms:

• vision problems
• tingling and numbness
• pains and spasms
• Fatigue
• Balance problems
• Dizziness
• bladder issues
• Sexual disfunction
• cognitive problems

Often weather can have a big impact on symptoms. For myself heat can really bother me which is unfortunate for someone who loves the beach. There are people with MS who have effects do to the cold.

Still smiling,

C

RightLeg Down was born out of my struggle with MS. Now let’s have a little science lesson. MS attacks the protective covering called myelin of the brain and spinal cord and damaging the myelin and therefore damaging the neurons causing lesions which result in MS symptoms. Think of it as a wire that has been stripped.

With me the myelin was attacked on the left side of my brain and as result any physical disability I have occurs on the right side of my body.

Now let’s go way back to 2013. One morning I woke up and the toes on my right foot just didn’t feel right, it was like they were asleep. Following several doctors visits and a few days later I could not move my toes and I was having serious drop foot. Along with this MS flare came extreme fatigue which put me off work for over a year definitely not what I was expecting in life when I was not even yet 30. As result I needed to use a cane to walk and could not drive. Upon getting my cane I decided that if this thing was going to be hanging around all the time, a name was required and Horacio “Cane” was born. I may have been a fan of CSI Miami haha.

Flash forward to spring 2019. I was feeling better than I had in years, (thanks to amazing MS medication, but that’s for another blog post) so decided I would sign up for a 5km race. Thinking it would be no problem as I had a few months to train, however MS has other ideas. Race prep day 1 was awesome so I’m thinking I’ve got this. Then after 3 weeks of training there was no improvement, my legs were so tired at my first step. This was so frustrating and very clearly due to MS.

Then the right leg started getting wonky about 3km in every time I was running. Drop foot was back similar to what happened back in 2013. The drop foot was also there at other times as well which was very frustrating and scary. Luckily it was not as severe as 2013 so Horacio could stay in the closet.

With the drop foot when running I would run as much as I could and would have to go to walking once I felt like I did not have control of my right leg and was afraid of falling. Think of it as walking/ running and dragging one of your legs along behind.

As this relapse was very unexpected as goes with MS but also with the medication I’m on, it was to the neurologist I went then for an MRI. Fortunately, there were no new lesions. The leg issue was still of concern so I was prescribed steroids to help resolve the issue. The picture below shows my breakfast with a side of steroids. Can you say gross.

So now back to the race, on race day my leg was the worst it had been. But I was going to do this race. I ran as much as I could in almost a gallop type stride and completed my goal of running cross the finish line. There was no official one legged race but it there was one, I would have won it.

Still smiling,

C

First of all welcome. Let me tell you a bit about myself. I’m a thirty something MS Warrior who has been living with Multiple Sclerosis (MS) for over 12 years. I live with a 65 pound mouth piece, also known as my Portuguese Water Dog, Zissou. Yes his name is Zissou, amazing right ? The amazing The Life Aquatic, anyone hah don’t worry you will get to see lots of pictures of him, my dog that is, not Bill Murray haha, or maybe even Bill Murray, who knows.

Life always has a good way of throwing you for a loop. There I was three months into my career and 8 months post graduating from university. I think I knew before it happened but it was still a shock. Then then sentence I will never forget “You have MS”.

This blog is about my life with my sidekick MS, and the fun I have along the way.

Still smiling,

C

Thanks for joining me!

Good company in a journey makes the way seem shorter. — Izaak Walton