Guest Blogger by Jennifer - Acceptance and Assistive Devices

I love social media and blogs.  Especially because it connects me with so many other MS sparklers and their stories as well as their advice.  

Today meet one of my MS Sparkle friends, Ms. Jennifer Digmann.  Her husband Dan and herself both have Multiple Sclerosis and this is their story of life, of accepting and some things that make for a better quality of life!

(PS: Interested in being a guest blogger on TSL?  Email me at thesparkledlifegirl@gmail.com).

Acceptance and Assistive Devices
by Jennifer Digmann

“Ironic.”

That’s the word I often use when talking about the National MS Society’s fundraising event Walk MS. Now, don’t get me wrong. I love the Walk MS experience, have led one of the top fundraising teams in Michigan, and already am gearing up for the 2014 event.

But the reality is: I haven’t walked in over 10 years. Ironic, right?

Then again, my life is filled with ironies! I am Jennifer Digmann, and Eliz is graciously providing the opportunity to share some of my personal perspectives about Multiple Sclerosis.

My husband, Dan, and I both have Multiple Sclerosis. People have repeatedly described ours as a "true love story." Two people with MS a true love story? Ironic indeed!

Combined we have had MS for nearly 30 years and together we show how MS impacts people so differently. I’ve had MS for 16 years and no longer walk, and Dan has had it for 13 years and is running in 5K races. We were married Sept. 10, 2005, and have been living happily ever after, despite having MS.

We host a blog, serve as guest speakers and have written the book “Despite MS, to Spite MS,” to help people move forward when dealing with this chronic illness.

There’s another irony: I blog and have written a book, but I have a very difficult time typing! When I was diagnosed with MS (link to http://www.healthline.com/health-slideshow/multiple-sclerosis-mri-brain-images) I could type just fine, with some speed and a manageable amount of errors. However, due to the progressive nature my disease, using typing software that uses voice dictation to type has made my life easier.

Such a program, like DragonNaturally Speaking, helps me so that I don’t have to type manually and struggle with my numb and clumsy Multiple Sclerosis-affected hands (link to http://www.healthline.com/health/multiple-sclerosis/effects-on-the-body).

Over the course of my life with MS, I have learned that adapting to the disease is not a sign of weakness. Making adaptations and adjustments are valuable moments of acceptance. If I have to live with Multiple Sclerosis, I need to accept that the disease is not going away and make the necessary changes to make my life better.

Some of the things I’ve done to simplify and improve my quality of life have included accepting help to manage my walking difficulties. I don’t know how many times I scuffed my toe and almost fell before admitting that I needed help. While that admission was difficult to make, once I did I started wearing an Ankle Foot Orthotic (link to http://en.wikipedia.org/wiki/Orthotics) on my left leg it helped me continue to walk in spite of my foot drop and made me feel much more confident.

By accepting and dealing with this physical change, I improved my situation and there were fewer worries about falling. While I no longer worried about falls; my AFO was not the most fashionable item to accessorize an outfit. But it was a small sacrifice. And there have been other changes in my wardrobe.

I’m comfortable admitting that I have adjusted my fashion to improve function and along with it, I save my time and sanity. I wear pants that are practical, i.e. no pesky buttons or zippers to frustrate me. That choice has made dressing much easier. And it may have taken me 30+ years, but I am finally accepting my naturally curly hair. For the most part, I’ve stopping torturing my tresses into straight submission. That acceptance makes my morning routine a lot faster and improves my confidence because I can better control these aspects of my appearance.

My mornings, heck my whole day, are also much more controlled because I have learned to accept that my MS is going to affect my bladder (link to http://www.healthline.com/health-slideshow/ms-incontinence#1). As such, I now take medication to better control issues like urinary frequency and urgency. There is also a lot of bladder control gained when I monitor and watch my fluid intake. Control is so important to my quality of life.

Honestly, the one thing I feared the most when I was diagnosed with MS was the dreaded wheelchair. I certainly do not advocate for just accepting it and not working to avoid it, but in some instances progression is unavoidable. For me using a wheelchair was one of the hardest realities to learn to live with, but now, I cannot imagine living without my wheelchair. It lets me control and manage my movement, and allows me access to so much more of everyday life that l potentially would have missed.

Making these changes have made my life a little easier and more enjoyable. Without them, I would’ve missed out on so many of life’s, as Eliz would say, more sparkled experiences  ;-).

Sparkle On

Guest Blogger...Captain Team Sparkle...aka my Mom.  Love.

I've learned over the past few months that one of the hardest things about MS is its unpredictability.  Even when a MS sufferer is in remission they can have a good day followed by a day where they truly cannot get out of bed. (As one MS sufferer calls it, a pajama day! More about that later.) It is hard for people who aren't intimately involved with someone with MS to understand this. A person with MS can't plan vacations, dates, or appointments with any confidence that they will happen.  They don't know from day to day when a "pajama day" will happen.  

Unfortunately, friends and acquaintances don't always understand the unpredictability of MS and take offense when lunch dates are cancelled, phone calls aren't answered, emails aren't returned.  They feel inconvenienced when plans suddenly change.  What they don’t see is what the MS sufferer is experiencing which might include extreme fatigue, tremors, spasticity, dizziness, cognitive dysfunction, headaches, and a multitude of other symptoms.  They might be lying in bed with the curtains drawn, using all the energy they have just to get something to eat or go to the bathroom.   Talk about inconvenience!

Elizabeth recently had long time friends who wouldn’t talk to her for weeks because she had to cancel an appointment. The day that Elizabeth cancelled the appointment she spent the entire day in bed because of an excruciating headache.   It was not a good day.  In fact it was a very bad day.  Imagine the stress that Elizabeth had to deal with as she repeatedly apologized and was never really “forgiven”.

Imagine a world in which you worry about every birthday, anniversary, wedding, baptism, appointment, or vacation.  Will you be able to attend?  Will you have a relapse?  Will you simply have a “pajama day”?  And you have to worry about other people’s reactions.  How often has a MS sufferer heard, “But you were fine yesterday!”  Or, “How can you be too tired to meet with me?”

Why am I the guest writer today?  Because Elizabeth is having an extreme “pajama day”.  She was able to walk all the way down the aisle at her sister’s wedding.  She was able to give the Maid of Honor toast.  She was able to attend the day after “wedding brunch”.  She was able to go to a doctor’s appointment by herself.  She was able to go to Starbucks and address many MS Bike postcards.  And then it hit.  An extreme pajama day.  Actually, several extreme pajama days.  And we are praying that it isn’t weeks and months of pajama days.  But, once again, that is the trouble with MS: its unpredictability. 

BTW, why pajama day?  I don’t know where I first read it, but one MS sparkler posted that she does not call any day a bad day.  Every day is a gift and she will not label any of the days as a bad day.  And so she coined the term pajama day.  This leads to one more thing that I have learned about MS.  MS sparklers are truly inspirational and show the rest of us how to live. 

Sparkle on, Elizabeth.