I smile as I reflect on the highs and lows of 2019. We started the season with incredible guests that kept us in awe, (MastaAce), became filled with optimism (Dr. Boster), fed our soul (Dr. Seewaldt), and made us squeeze our loved ones a little tighter because of how they love us (Courtney Townsend). Each episode is a learning experience for us, along with time to grow and think of more exciting content to bring our listeners.
This Multiple Sclerosis journey is by far one of the toughest burdens we manage, but our dedication and passion to the podcast (and listeners) are a few reasons why we refuse to stop. If you recall, Daana recorded many season 2 episodes from the hospital and rehab, then after 18 years of living in Washington, D.C., I packed up my home and son (by myself) moving twelve hours away. Both of these incidents occurred #BecauseMS. MS is terribly unforgiving, and when it roars, its energy runs you over with a vengeance.
Thank you for those who have listened to Myelin & Melanin since the first day we aired season 1 episode 1! We also greatly appreciate our new comrades tuning in and always providing heartfelt comments. 2020 has a lot in store for all of us, and hopefully you can feel our excitement rumbling. Make sure to listen for the alert when the Season 3 opener airs on January 18th!
Changing your way of thinking is a big adjustment for a lot of people. Of course, we go through life expecting our lives to look different as we age, but when it comes to those of us with MS that’s a hard pill to swallow.
In episode 17 we talked about how difficult it can be to accept the fact that yes, life has changed, & we HAVE to alter our lives a bit. So what does that look like? For those of us with MS, it means we paradigm shift. This week we had the pleasure of having a brilliant neurologist, Dr. Aaron Boster, provide us with vital information about paradigm shifting, and what it looks like for Multiple Sclerosis patients. Dr. Boster of Ohio Health MS Center in Columbus Ohio says that paradigm-shifting is, learning how to adapt despite the MS challenges that step in your way. Take a look at his video on Youtube about this topic and ask yourself if there are areas in your life that can benefit from a shift.
Dr.B discusses the concept of “Paradigm Shifting” to thrive despite having Multiple Sclerosis. Multiple Sclerosis can result in loss of functions (for example balance). When this occurs it can be challenging to learn to adapt and eventually overcome, despite this new limitation. Learning a new DIFFERENT way to accomplish the old tasks using new ways can result in success. Paradigm shifting is important.”
During the podcast, both Daana & I mentioned the emotional toll it can take when you find yourself living a new normal. Quite often this “normal” isn’t one that we are ready to accept into our lives. That’s OK! There is a process when planning and thinking about how life will look as you go through the phases MS.
Start with changing your narrative then allow the shifting to begin. Be KIND and GENTLE with yourself, remember this is a “marathon and not a sprint.”
What have you done for yourself since the New Year began? Can you believe we are half-way through our year? It is hard to imagine that there are 67days until fall. Cooler temperatures will soon creep in, and before you know it we’ll be preparing for Thanksgiving. I should probably ask again, have you taken time to replenish, or fill your own tank? Have you carved out enough time to make YOU a priority?
Quite often, we become so engrossed in the lives of others which can leave a person feeling depleted. When you do not pause or take a personal inventory, you run the risk of neglecting your needs.
In Episode 15, Put Your Mask On First: Self Care And MS, we discuss ways to make sure you’re caring for yourself. When managing a chronic illness like Multiple Sclerosis, it is imperative that you remain a priority.
I know the term self care is seen everywhere these days and many go through the day uncertain about where to begin. We are left asking ourselves, how do I start? It is important to know that self care is not a selfish act, it is a necessity. Take a look at this checklist list we feel can help you manage your peace,pause and self care.
In addition to the checklist, peruse the article from Well + Good which highlighted Dawn recently. She discusses methods she takes to ensure caring for herself has become priority.
Does the word control stir up an emotion for you? For most people, when they think of controlthey feel confident and strong; as if they have a handle on their life. But that isn’t always the same for those of us with MS. It’s as if we struggle to gain power while holding on to a mask that shields the fear and uncertainty.
What I found, as I manage & navigate this wild illness, is I’ve lost the feeling of having control. Daana and I both have had over a decade of fighting with a monster that does not care about us. Quite often, the lack of control turns us into multi-taskers. We carry the shield to cover all the emotions along with bringing new challenges.
As we discussed throughout the Podcast, having an MS diagnosis can make a person feel we are in a constant state of uncertainty. The fact that our bodies have been invaded — well actually our bodies attack itself — will force you into wanting to take charge.
We chuckle, but the determination can (and does according to various studies) lead one to OCD or other disorders (i.e., an eating disorder).
Take a look and read some of the articles we mentioned in Episode 14. Feel free to comment or send us a message!