Friday, October 24, 2014

All The Things I Wish I Could Say...

"How are you? You look great!" Pause & think, "Moron! God! The only thing that I want to do at this very minute is crawl into bed & hibernate there indefinitely." Instead the answer that leaves my mouth is, "thanks! Things are great!" Why do I respond this way? Because no one really cares if a person is tired, or depressed, or if a progressive disease has robbed them of their dreams. They often don't even know what MS is! How do you explain fatigue that has become so crippling that death would be an easier alternative than constantly pretending?

Ok! Enough with the dark & gloomy! Let's try again, "How are you?" Well a lot has happened since my last blog in 2010. CCSVI was a miracle for me until August of 2013. I had no fatigue, no vertigo, & I no longer needed disease modifying drugs! I felt great! Not only did I have two young children, I worked as a nurse for a private company, volunteered at various organizations, & worked out 3-5 times per week. Unfortunately due to federal budget cuts, our family was transferred from Manitoba to Alberta in May of 2013. I started a full-time job in a very busy emergency department working with children with mental health & addiction concerns. I loved it! But as you can imagine the emotional & physical stress of such a job, a relocation, & caring for 2 young girls took my health downwards. By October of 2013, I was taken off of work & placed on Tecfidera. I no longer have feeling in my left leg, I experience severe facial & leg pain, & the fatigue...!!!

At this point, I'm on long term disability & will likely never return to work. I'm angry that a disease of all things has taken away my dreams & aspirations! I worked hard to become a specialized nurse! I had a nearly perfect GPA & scholarships that paid my way through university all while just having been newly diagnosed with MS!! I was excellent at my job & I know I made significant differences in other people's lives. It hurts the hell out of me when people comment, "well at least you can stay home with the girls. I would love to be able to not have to work." How does one with MS respond to such a statement?" "Ya, I love that I can't fulfill my passion anymore, duh!" It's one thing to personally choose a new normal vs being forced into a new normal.

Don't get me wrong, in all of the above-mentioned misery, I do count my blessings. I am beyond blessed to have an amazing neurologist, psychologist, & family physician who genuinely care about the best interests of me & my family. I am thankful that my husband is so helpful & understands when "I just can't..." I am thankful that because I'm not working, I do have a bit more energy that I can give to my kids.

Well those are the things I wish I could say & I've said them! What do you wish that you could tell someone when they just don't get it?