Showing posts with label ms awareness. Show all posts
Showing posts with label ms awareness. Show all posts

Tuesday, March 20, 2018

Multiple Sclerosis Influencers

Healthline recently posted an amazing article recently highlighting 7 MS influencers with their mantras that keep them going.

And I had the pleasure of being one of the 7!


Be sure to share what your MS mantra is! 


Saturday, March 17, 2018

How I Stay Positive

I get asked often how I remain so positive.

To which I used to answer, with all sincerity: I just do!



It wasn’t till lately when someone challenged me with the question: 


what are the actual steps you take to remain positive? 


that I saw there were actual, distinctive things I do to remain positive.

First and foremost: I honestly believe the best medicine you can give your body is a good mood. And science thinks so too. Thinking positive thoughts in your head releases certain hormones that relax your bod and equip it for stress.

A firsthand example of this was when I had my bicycle accident. As soon as I landed I knew I’d broken my elbow and could see my humerous bent oddly and pointing out. I panicked. Someone called the ambulance. Someone else took care of my bicycle. There was a Mom with her kid. For some reason seeing that kid brought things in focus for me.  I cant say bad words in front of this kid (this was after I let a lot of f words slip).  I cant let this kid, staring at me terrified, see me cry.  I reminded myself I needed to stay calm, to focus on something good. I started repeating to myself, "I’m going to be ok. I’m going to be ok".  Outloud. And I believed it. So much so that by the time the ambulance got there, my blood pressure was in normal ranges. The EMT was quite impressed.




So, positive thoughts = good.


But how do you run to them easily when the going gets tough?

Training. Just like with anything, it takes time, persistence, and dedication.

Step 1. You’ve decided to adapt a positive lifestyle and mind and remain positive when the going gets tough. You have to want it.  You have to be willing to work for it.

Step 2. Remind yourself of this. Write phrases that remind you on postits and put it where you'll see it many times a day. Change the background of your phone to a positive phrased wallpaper. In those moments you become overwhelmed, you’ll see these reminders and then you’ll go back to step 1: decide to remain positive.

Step 3. Have a go to positive uplifter. For me, it’s puppies. Whenever I’ve had a rough moment where I just don’t want to be positive, I go to the puppies. Either in real life or on instagram / Pinterest. This is an immediate mood lifter. I then see one of my reminders, and then I’m back at step 1.



Step 4: gratitude list. Make a list of all the things you’re thankful for. Keep it within arm’s access. Go to it to add to and remind yourself often. Yes, mine has the basics: faith, family, friends, puppies. But it also has Starbucks. And pizza. And cycling. And the color rose gold. And Paris. And pool days. And so on and so on. It’s a beautiful list of all the things I’m surrounded with that are positive.

Step 5. Reward yourself. Every year on my anniversary with MS, I get myself a present. Something small (an engraved ring) to something big (my hope tattoo), it’s a reward. A reward for making it through the past year with a positive mind. It’s not always easy to do; some days, it’s REALLY hard. But rewarding yourself reminds your brain and your soul, you’re doing great, keep it up.



Step 6. Condition. It helps to have a friend in this stage, or a coach. For me, it was someone I was close to when I was newly diagnosed. Whenever I’d start weeping or complaining, he’d point out a positive lining. It was REALLY annoying. It caused many fights. Why couldn’t he just let me be sad? Then slowly I started to listen. I started to recognize the good. I then went from recognizing to LOOKING for it. And, in every situation, to this day, I’ve been able to find it, to find something good, positive. Even if it’s just me being able to breath: that's positive; I’m alive. 

You have to work the brain muscle and condition it to this type of programming. With time, it will eventually become so instinctive, you won’t even have to think. You just go there. You just are positive.


All this sounds good and attainable.  But what about on those really bad days?  The days where the light is dim and the positive light is dimmer.  What then?


  • No “triggers”. First you have to determine what the triggers are. For me, it’s Facebook (all my friends are living life without me!), dramatic shows/books/movies, depressing music. These melt me in to a state. This also relates to what I surround myself with socially: on media and in real life.  Some people may be a trigger for you in some way (I really dislike the word trigger but here it is applicable).  And for whatever reason it is, maybe just take a break for a bit.  It can also be that someone is continually negative- when you're trying your best to be the opposite, their energy can be depleting.  As has become a very strong saying between my bestie and I, "bless and release".  
  • Quiet. On bad days, I’m very quiet. This usually is because on bad days my speech isn’t working.  (: But also it’s to save energy. I put that saved energy in to healing my body from the hard day.
  • Have a cry. Or reschedule. If necessary, I’ll have a little cry. Just a little one. And then I’m done. If I feel like I need to cry more, I’ll “schedule” it for another time (no joke). I’ll save it for, say, 9pm that night. By pushing it out, I give myself time to find something positive that will outshine that sad moment. If I need to cry though, it’s scheduled, just in case.
  • Make a list. You don’t have to be productive to trick your brain in to thinking it is. If my mind is overwhelmed with thoughts, I’ll make a list of them. Done. They’re on paper/in my iPhone notes. No longer in my brain. Sounds silly but this works; my phone has so many lists on it it's probably quite obsurd.  The cool thing about this, when looking back retrospectively at "bad day lists" of what I'm anxious/worried about, these things I thought were so challenging, I've overcome.  
  • Change the clothes. Even if it’s just switching from pjs to a different pair of pjs, I change. This is important in keeping respect for your body. Showering is just too damn hard some days but changing clothes is attainable. It gives me a little reminder I’m not giving up on my body, I believe in myself enough to change in to clean pjs.
  • Talk to your go to. And don’t talk about your disease outside of “I’m having a bad day” and maybe a bit on what that means for you in that moment. Get lost in the conversation. Even if it’s just for 5 minutes, you contributed to society. You let your mind focus on someone else. You got distracted.

These steps help me to calm my body down. 

And then, I return to the basics:

Deep breath. Quick prayer. Can I be positive and look at puppies? Nope, still a bad day. Ok.

2 hours later: deep breath. Quick prayer. Positive time? Maybe. Ok.

3 hours later: deep breath. Quick prayer. Brain goes back to conditioned mind. I see a post it. Is that a puppy video? Omg puppies are so cute. Ok. Not every day is good but there’s good in every day. Tomorrow will be better. Good night.



Then there are the quick moments: your doctor just gave you bad news. You have to drive home but can’t stop crying. You just want to crawl in a hole. What do I do?

Breath.
Do a body scan.
Head. Shoulders. Back. Hips. Legs. Arms. Am I contracting those muscles? Release. Contract. Release.
Breath.

Look at you- you just took your mind off the bad for a few minutes. You’re going to be ok. Repeat that over with a deep breath in between each movement. You’ve got this.



All this might sound ridiculous. And even while writing it out, I thought “really Eliz?! This is what you want to share? How you schedule your cries?!”

Damn right it is.
Because this is my recipe.

I’ve had some terrible things thrown at me. And yet I still wake up every day happy. Because why not? I’m alive. I’m beautiful. I’m breathing. I have puppies. I have God. I have my family and friends. I have Paris. And I have Starbucks.

Life is good.




Something I want to note is depression and MS have a very strong connection. If you’re feeling like you can’t think of a positive thought no matter how hard you try, seek counseling. Talk to your doctor. It does not mean you’re weak. Ms causes brain damage through demylization and sometimes that can cause depression. Reach out.

Monday, March 12, 2018

this is MS tshirt


(picture by Empty Nest Studios)
damn right it is!!

Get your "this is ms" t-shirt and wear it with pride. Let the world know what MS really looks like. 


Comes in a regular mens t-shirt too! https://skreened.com/thesparkledlife/this-is-ms-6492956



hear I am fashionably wearing it during my last chemo drug infusion (:


Wednesday, April 30, 2014

Oops

Oops. 

I guess it so happens I'm not so good at keeping new year's resolutions.

Aka The Sparkled Life blogging is making a 2014 comeback.

(ya baby!!)

Ive done much thinking about this decision.  I struggled to determine exactly what route I wanted to take as a blogger.

The most popular and "cutesie" blogs out there usually fall under three categories: 
DIY, wifey, motherhood (and usually a mix of all three).

Here's the issue...I'm actually pretty terrible at DIY, I'm not a wifey yet, and motherhood just isnt my thing at this time (besides you have to actually have a baby for that part...go figure).

So as I was comparing my past, current, and future blog life with those most popular and cute, I wasnt measuring up. 

That's when I realized that I wasnt suppose to be measuring up to those blogs.  I had a stance, a platform so different.  One that needs to be expressed, because unfortunately, there is little awareness about it. 

And that platform, ladies and gents, is my life with multiple sclerosis, aka The Sparkled Life. 

I may be horrible with a hot glue gun but I've gotten pretty damn good at living with ms.  And that's what I can share: my story, my secrets, my struggles.  

http://instagram.com/thesparkledlife

So here we are again...two years after I first started TSL I find myself logged back in and ready to share.  

Eek.  I'm even a little bit excited about it.  Who would've thought?  

Here we go, another chapter sparklers!

Love,
PS: check out @thesparkledlife on instagram to see what's been going on these past 120 days


Sunday, November 24, 2013

MS Awareness...And Why it Matters

Yesterday I had the pleasure of attending Western PA's National MS Society's Annual Meeting, volunteering with their advocacy team.


As with all MS events, there were a lot of canes, lots of orange and lots of encouragement. 

It really initiated my thinking on why there needs to be such a big push for MS awareness, especially with upcoming events.

One of the most promising things on the horizon for MS is Stem Cell Research (which translates as possible relief and cure).  However, Stem Cell procedures wont produce the type of revenue stream a new drug would.  So drug companies are not interested (you might even guess they would do things to hinder this so their drugs stay on the markets longer...just guessing).  Independent funding is few and far between.  And government, well, government does not see things clearly with regards to MS and funding.  

So this is what needs to be done: we need to go orange. 

I know, its a gross color, it really doesnt look good on anyone and is specifically forbidden on my personal fashion color palette.  But it's time. 

Here are some ways in which you can help create MS awareness:

1. Share MS blogs (such as the sparkled life or various others you may come across).  If you have a MS blog, send me the link with a photo and I'll gladly add you to my badges.

2. Write your own MS story (if you do not want to start a blog, send me your story for a guest blog on TSL!).
3. Get involved with the National MS Society.  Donate to the National MS Society.  They are our biggest ally.
4. If you are a man, love leather and need a coat for the chilly weather, visit my dear boys at Atom Willis.  They donate a proceed of each coat to MS research.
5. Buy a bracelet from my friend at Keep Smyelin.  Nothing says MS awareness like a pretty orange bracelet. 
6. When the time comes, call your representatives, call your government.  MS is a real disease, with real problems.  Call them out on the overall health care reform.  If they want to help, then please help.  Fund the research.  Fulfill discoveries.  

I have respect for our government.  However we shouldnt forget the government works for us.  We are allowed to voice our concerns.  And there are many concerns.  

Lets do this.  Lets go orange. 

(ewh...why cant MS be a prettier color?!)

Love,