The Rocky Ride of MS and What Helped

Multiple Sclerosis is like riding a roller coaster in so many ways.

This past year has shown a lot of love for this Girl with MS.  Some symptoms subdued, others raised their voices.  But top on my list was meeting so many wonderful people living with MS across the country, in person and around the world via the internet and telephone.

Despite my good year and pleasant holiday, the MS reared its ugly head with a bad case of pseudo bulbar affect or PBA.  One minute laughing, the next in tears.  I just call it the funk.  And it got a holt of me bad the other day. 

The fact it's the end of the year caused a bit of the emotions. Focussing on what did not get done in 2019 led me down a path of quick depression.  Even healthy people have to give themselves a break, but the pressure and disappointment that one can put on themselves can be debilitating.  And that's where I found myself.  

You know what helped?  Knowing my new neurologist and his nurse were just a phone call away.  And second, reaching out to all of you, reading your stories and reminding myself that we can get through this disease.  We have each other, and that, my friends means the world to me.  

Here are just a few of the great folks.  They all do amazing work/writing/advocating.  Click on their names to visit their blogs/websites.  This list will be growing!  



with Cathy Chester



with Dave Bexfield

This Group! Amazing folks


Lydia Emily - Street artist and bad ass 
with Lydia Emily
with Ashley Ringstaff and Nicole Lemmer 
Nicole Lemmer - My New Normals


with Carolyn Kaufmann

 Carolyn Kaufmann - Without the Weight


with Dr. Barry Singer 
Dr. Barry Singer - MS Living Well  


with Cheryl Hill - marathon runner
Each and everyone of these people are deeply involved with MS.  Most of us living with it.  Such inspiration from all of you.  Thank you and here's to a happy, healthy new year.  May 2020 find you with peace and love and minimal MS junk.

I know there are many folks missing off this list.  It's a work in progress.  Been making some Hoppin' John and it's ready for chow time.  I'm ready and dang, I'm hungry!



#takeTHATms!  


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Holidays, MS and Surviving the MS Dictatorship

How did it get to be December? November flew by as usual. As did the rest of the Fall. One of my favorite times of year, the Fall. But then I pretty much love every time of year.
Joshua Tree, CA by Caroline Craven
The holidays can be tricky with MS. The emotional roller coaster, the disease itself, the losses that result. MS is not for sissies. Throw in the holidays and one could have TNT on their hands.
It's easy to get wrapped up in the festivities, duties or even the burdens of the holidays: you're feeling good, things are rolling along and you're getting it done!
Until one day you wake up and, well, start freaking out. "How am I going to get it all done?" The money, the chores, the obligations. It can all be so everwhelming. And throw in an unreliable and random disease like MS and the simplest thing such as getting out of bed can be impossible.
MS is often called the invisible disease. Folks think you look great so you must be and feel great. Nothing could be further from the truth.
I had a lovely Thanksgiving this year but my MS threw me for a couple of loops. The emotional roller coaster seemed unending. Up one morning, down the next. And I mean really down. I don't like feeling that down. Weakness and pain wrecked havoc on my body as well. Hit with a 24 hour bug, the flu like symptoms lasted days and sucked the life out of me. Energy gone, balance gone, I envied the elderly man leaning on his wheeled walker while I held up the wall of the church with my back.
"How am I going to get back to the car?" Weak from the flu, weak from MS, my legs were trembling. I had no cane. No walker. No friend to hold onto. Stealing the last bits of energy, I rallied forth and made it to the car to wait for the family to drive us home. All the time thinking, how am I going to get everything done for holidays when I can barely walk a block to the car?
Oh how I despise this part of the disease: being forced to slow down despite what you may want to do. No one likes to be dictated. MS is a disease that will teach you to live under a dictatorship. But like any life we live by our choices...so what is it going to be?
Here's my game plan for surviving this years MS dictatorship:
  1. Listen to my body
  2. Listen to my MS
  3. Make Priotities
  4. Set limits and boundaries
  5. Be flexible with expectations
  6. Be compassionate and easy on Me
Doesn't look like much but it is. It all seems so simple. So logical. But yet, so easy to overlook when actually living our lives.
Today I'm taking charge of my own MS dictatorship for the next month. One day at a time.
The holidays will arrive whether I'm well or sick, so time to do this right and get on with life. Time to manage my MS like an iPhone battery: to conserve and preserve energy to maintain quality of life with MS.
Off to get the day started and take my own advice!
Let's do this!

I posted this originally a few years ago, but it rings true every year, except for the flu.  Whew!  No flu this year!
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