Tag Archives: #MS #MultipleSclerosis #MSawareness #LivingWithMS #MSprevalence #MSeducation MSrelationships

The Bucket List

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A positive thing about getting MS is that I don’t put off tomorrow what could be started today, because tomorrow may never come.  I learned this before my MS dx at 25 yrs. of age. I was only 17 when my dad unexpectedly died.

Things like this alter not only your life, but your perspective. Whether it was my youth or personality, I had goals in life that included a huge bucket list of things I wanted to see and do. I love travel, nature, history, and culture.

Going to Alaska was a dream on my bucket list that came true. I was in my fifties, and despite the nervousness about my ability to handle such a trip, I was determined to go.  I often say that my legs don’t work, but I have a mouth and a brain to get what I want. It took a ton of planning that was done a year in advance, but boy, it was worth it.

My accessible trip–

  • Used planes, railroads, coaches, boats, a cruise ship…
  • Toured Anchorage, Fairbanks, Juneau, Vancouver…
  • Experienced Glacier/Denali/ Wrangell St. Elias National Parks…
  • Included roadhouses, the Alaskan pipeline, gold mining, northern lights…
  • Viewed moose, eagles, caribou, bear, and even an Iditarod race husky ‘boot’ camp.

If you or someone you know in a wheelchair wants to go to Alaska, here is repost from my blog explaining what I learned and how I did it–.Tips to Cruise/Tour Alaska in a Wheelchair (with videos)

MS is unpredictable, but so is life. If there was an obstacle at some time point, at least I tried.

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Debbie Petrina
Author of Managing MS 
       Kindle Unlimited
Moderator, MultipleSclerosis.net 

“I Live With It, Too.”

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It was a high-tension day recently for both my husband and me, for reasons unrelated to MS. Stress levels reached the top and were in the red-flag zone.

It’s hard to be patient with some things. Sometimes patience runs out. Often, words are said that are not meant.

Snarky remarks over trivial things grew into an argument. He started yelling and swearing. I internalized it until my pressure cooker lid exploded. I started yelling and swearing back. The ugly exchange came to a head like this:

Me:  I have a disease of the nervous system. Don’t you understand what stress does to my MS?

Him: Yes, I do– I live with it too. Ruined my life.

I became speechless and retreated. It was true, and at that moment there was nothing more to be said.

Yes, MS affects both of our lives—socially, mentally, emotionally, financially. I may be the one suffering from things like pain, walking, fatigue, etc., but my husband feels the pain of watching me struggle and tries desperately to help reduce the painful struggles for both of us. We may walk in different shoes, but that doesn’t necessarily mean one pair is better or worse than the other. The irony is that neither of us would trade our shoes with each other.

The non-MSer can opt out. Lucky for me, my hubby didn’t. We survived MS together for 42 years of our marriage with a lot of difficulty. But it doesn’t end with just your partner.

The number of people living with MS is estimated to be one million in the USA, and 2.8 million worldwide.  Actually, the number of people REALLY living with MS is much larger when partners, children, other people that are part of our daily lives are considered. This includes many of our doctors and others treating MSers who try so hard to help us feel/do better but feel helpless when they can’t.

Need some tips, stories, and strategies for interpersonal relationships? Check out my book, Managing MS, or one of many of my relationship blog articles.

It’s a huge burden for a hell of a lot of people.

 

Debbie Petrina
Author of Managing MS 
       Kindle Unlimited
Moderator, MultipleSclerosis.net