Girl with MS Support Group & BelongMS are here to help!

Help!   I definitely need extra support during these epic times.  How about you?  

As many of you know, my focus is Conquering MS with Self-Care.  Self-Care means a lot to different people but for me it represents a combination of awareness, education, action, and medical expertise.  As people living with MS, the need for social connection is essential in keeping us sane. At least it is for me!  

One of my most asked questions is “Do you use an app or other social media to help with your MS?” And the answer is Yes. 

I’ve used and tried different apps and social media outlets over the years and each has slightly different offerings and options.  After being shut down by facebook due to a hacker, (My story here) I knew I needed something more reliable.  

For my current life with MS, I have chosen BelongMS (part of Belong.life) to share my twenty years of experience to help others.   

We created a Girl with MS support group.  And it’s not just for girls. As a certified life  coach, nutritional educator, health journalist and someone living with MS for twenty years, we have stuff to talk about!  There are many tips and tricks and just over all support that will help us live better with MS. Will help us all say, #takeTHATms!  

  

And now we can chat directly via Belong.  Anyone with MS can join Belong and find tons of support, friendship, expert advise and even clinical trials. Once the Belong app is downloaded and you have registered (click here for app), then you can scroll down and see the different support groups.  Mine is circled below and is the Girl with MS.  Join me!  

The Girl with MS Channel is all about Self-Care.  We’ll talk about different ways to take care of ourselves, ways to find ourselves and ways to support each other.  

Because if I don't take care of myself, this is how I end up feeling:  

  

But when I do take those extra steps, those extra little measures to take care of myself like medical visits, and extra caution,

I can have days like this: 

I’m looking forward to “seeing” you on Belong and having a channel to talk directly with all of my MS friends out there.  If you already have Belong App, then look me up and let’s chat!   

MS is a challenge but together we’re stronger.  Together we can support ourselves with questions, answers, encouragement and laughter.  Together we can BELONG!    

And together we can say #takeTHATms! 

MS is like an iPhone Battery...and I need a recharge!

Keeping ones battery charged with MS can be as tricky as keeping an iPhone going all day. Remembering to turn off location services and programs running in the background is vital to keep an iPhone chugging along. But how do we do this with MS?

How do we turn off those programs running in the background. That constant chatter of energy being wasted. Do we meditate? Medicate? Or both. 

And when it comes to our location services, how do we unplug ourselves from those wanting our energy? Do we withdraw? Or de we become strong and set boundaries?

So much in life has changed with my MS. Every decision, every thought is focused on how it will effect my mind, body and soul. While this is a good thing in the long run sometimes one really just wants to kick down a loaded cappuccino, go for a hike, enjoy a pipe on a cold and rainy day while reading Harrison, drink a glass of wine or two with good friends, tie some flies, hop in the car and drive...just drive. A certain since of freedom is stripped when a disabling disease like MS hits. Freedom in so many ways. Once a road warrior. I am now a shuttling sissy.

It started with a panic attack on the LA freeway amongst heavy traffic. No escape. Panic stricken, batteries faded fast. Eyesight diminished rapidly. Then the convulsions and dry heaving that would randomly hit never made it safe. Let cramps, not good for driving either. While these issues don't happen all the time, they've occurred enough for me not to trust my body, understanding now that my batteries could crash at anytime. Knowing this makes me feel vulnerable and vulnerability creates fear. Too much fear can strip us of our lives.

To a point we can quick charge our batteries: caffeine, tobacco, provigil, sativa, sugar, etc. But how long can we quick charge before the battery won't take a charge? And when we are left stranded there is no back up battery. No way to plug into the wall and recharge. We have only one battery. We must take care of it.

So how do we turn off those extra programs running? Visually I imagine the blinders on horses. Those eye guards that keep the horse looking ahead and not distracted. "Put your blinders on Caroline" and get to work. Focus on one project. Or one meditation. One walk in the rose garden. The point is to have just this one program running. And turn off all others. Blinders. This works for me, most of the time.

But there are those times when it doesn't work. When I need a distraction. And another distraction. And again and again until I have six programs running and my battery bar is slipping fast. "Put those blinders on." But sometimes it just doesn't work.

Then, finally, I stop everything and go lie down in a nice cool place that's not to bright. Closing my eyes and just being quiet. Recharging. Ahhhh. It takes strength to keep our batteries charged. To know what we need to do to take care of ourselves. To unplug from others when we are on low battery and turn off our location services.

For me this meant learning a lot about boundary setting. Rules. My rules for my health. This can be hard on friends and family. Setting boundaries can take a lot of explanation, patience and communications. But it's essential for defining our needs to keeping us alive and void of fear. To live life on a full battery. That's my goal. To manage my software and take care of this battery before it won't hold a charge.

Let's do this. Let's keep our batteries charged. Let's rid ourselves of fears and vulnerability. It's time. It's time to take charge and recharge.

#takethatMS

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