Wednesday, 6 March 2019

The professional patient

"So why don't you work now that both of your kids are in school?"

If I had a dollar every time I heard that...

On top of living with MS, and learning how to get through daily symptoms and interruptions to life (which is a huge thing as it is), it involves so much more.

There are so many appointments. Usually at least 2 a week.  I see my Neurologist at least every 6 months, usually sooner, my neuro-ophthalmologist every 3 months, and there are many brain and spinal cord MRIs. I administer my own injections every day at home (which requires so much prep - heating my skin up before, then cooling it down after.  And until I find another medication I can tolerate, this is for life).  I have my own mini-medical clinic at home!

Then there's the 3-day hospital bouts of IV corticosteroids, the myriad of other doctors I need to see as new issues pop up, plus the cocktail of other medications I need to take to stay on top of things.

Most appointments usually don't bring good news.  Which I understand.  That's the nature of this disease.  But with that also comes the need to be extra vigilant about my mental health. Living with a degenerative disease is a terrifying thing.  I need help with that.  Add in the appointments with my therapist plus medications (yes, I talk freely about that.  No stigma about maintaining mental health).

Today was eye-injection day with my neuro-ophthalmologist, in order to try and control my nystagmus and eye shaking.

But I am so lucky I'm still fully mobile, and for the most part, able to participate in life.  And I am thrilled I get to be an Ambassador for the MS Society of Canada and work with the Peer Support Program, and dedicate so much time volunteering with them.

Needles in eyeballs every three months, you ask?  Plus daily injections and other meds to maintain my health, plus sometimes not being able to stand or balance, or see, or think, or feel sensations.

Plus there's those two kids, and soon-to-be dog! (whom I love dearly)

That's why I can't work.

Rant over!  (Haha)




20 comments:

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