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"I thought I was just going skiing"

Virginia Dineen thought she was just heading off for a skiing trip with her family but instead her holiday marked the start of her journey with MS.

It all started in Ontario, Canada on a beautiful, wintry Sunday in January of 2015. I was skiing with my family for the first time that year. By lunchtime my legs were feeling the familiar fatigue and burn of using muscles I hadn’t used in a while.

Leg fatigue and lesions

I relaxed in the chalet for the remainder of the day while my family continued on. Over the next few days the leg fatigue didn’t get any better. By Wednesday that week I was tripping over my feet and I felt like I was dragging my right leg through sand.

I also noticed some numbness on the right side of my stomach. I didn’t think too much of it though as I wasn’t experiencing any pain. By the next weekend the numbness had wrapped around my whole right side.

I decided to visit my family doctor that Monday. She did a basic neurological assessment and found there was some weakness on my right side. She suggested that I follow up with a neurologist and have an MRI. With a referral letter in hand, I went to the emergency room of a downtown Toronto hospital for an MRI.

I waited from 8:30 am on Tuesday until they were able to accommodate me at 2:00 am Wednesday. I’m not sure if I was in denial at that point that something might actually be wrong, but I don’t remember feeling worried. I saw the neurologist Wednesday afternoon.

I was informed that there was a lesion between T7 and T8 on my spine. I would need another MRI of my brain and upper spine. I was told these lesions could be indicative of MS or or Clinically Isolated Syndrome (CIS). By Friday morning at 3:00 am I was back in the scanner for my second MRI and back at the neurologist by noon. Numerous lesions were identified.

A diagnosis of MS. I was told to “Go home. Read. Process the news. We’ll see you in three months to check out your symptoms. Then we’ll discuss treatment options.”

An emotional cycle

An emotional cycle of shock, disbelief, sadness, fear, anger repeated over and over during the following weeks and months. Along with an epic amount of tears. I felt paralyzed by my thoughts and the symptoms that were taking over my body.

The lack of cooperation from my right leg now meant I couldn’t drive. It made it difficult to walk safely down stairs. The extreme fatigue was overwhelming, and the cold winter weather made my symptoms worse. I felt housebound.

My family, friends and coworkers were so amazing and supportive during this time (and continue to be). Everyone just stepped in and picked up all the pieces. They helped to hold me together when I couldn’t.

Counselling was essential

I went to see a counselor almost immediately. Looking back, that’s probably one of the best decisions I made for myself. This allowed me a safe place to talk about all of my fears around the diagnosis of MS, and what it would mean for my future and that of my family too.

I could also start figuring out a new definition of what it means to take care of myself. After having some time to reflect, I think I had actually had MS for a few years prior to my diagnosis. Small things that I didn’t give a second thought about at the time; a bit of numbness, balance issues, etc.

Things would just come and go. They didn’t mean much by themselves but with the diagnosis now make sense. I visited the neurologist again three months after my diagnosis.

No to medication

He brought up treatment. To him this meant medication. After much reflection and discussion with my family, I decided to say “No thank you”. I just didn’t feel that path was right for me. At my one year follow up I declined again and I will continue to say “No thanks” as long as it feels right for me.

My treatment during that first year consisted of counseling, massage, osteopathy and seeing a naturopath but I still felt like something was missing. After reading what felt like every single MS book, article and website, I finally stumbled upon the OMS website. It was the missing piece that I had been searching for.

It was the first time I heard and read the words 'hope' and 'recovery' around a diagnosis of MS. This was the turning point for me. The sense of control and hope I felt I had over my own wellness. It all just made sense.

skiing in mountains

 

 

 

 

 

 

 

 

 

Empowered by OMS

I had the opportunity in November 2016 to travel to Boston to see Professor George Jelinek speak and to meet others with or affected by MS. I left that day feeling excited and empowered about my future with MS.

I am still in touch with a number of wonderful folks I met there and we have an email group where we share stories, struggles, recipes and tips to stay well. I

have been putting the pieces of OMS into place over the past year and I feel much better for it. I love to cook, so the dietary component has been the easiest part for me. I’m not yet a daily exerciser or meditator but I do the best I can each day.

Skiing again

I even went skiing again for the first time since my diagnosis this winter. It was only a half day but this is part of the new me enjoying life in the way that makes sense.

Accepting my diagnosis of MS has allowed me to put my wellness first. I make different decisions now. I have new limits and I navigate my days differently. It’s certainly not perfect, but it’s better. All I can do is continue to try. That’s exactly what I plan to do.

Virginia Dineen

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Danita Tilley (not verified)

Thanks for sharing your story Virginia. I admire your decision to take one day at a time and find alternative methods for treating symptoms. The fact that you are skiing again is fabulous and a true testament to your character. I can’t wait to read a follow up to this article. Love to you ❤️