“Write everything down • Take more pictures • You can’t own too many black sweaters • The reason you’re waking up in the middle of the night is for the second glass of wine • If the shoe doesn’t fit in the shoe store it’s never going to fit • There are no secrets • Back up your files • Overtip • Never let them know • If only one third of your clothes are mistakes, you’re ahead of the game • You can order more than one desert ♥”
im bringing sparkling back
today I felt extremely loved.
Which was a huge blessing.
As expressed prior, the past few days have been challenging, mostly emotionally. Not only is this a common side effect of MS, I had a lot baring on me in life as well. It caused for a little depression.
But Im back, sparkling as ever. (: And its mostly due to the love and support of you, my family, my bf and my lovely friends. oh and puppies.
I received multiple mail and packages in the past few days, all encouraging and support in HOPE. Today I was surprised by my best friend and a lunch date. And I was able to ride the recumbent bike for 50 minutes. All things that made me happy.
The reason why hope was darkened the past few days could be summed up from a quote I read from another MS sparkler earlier today:
When do we all get to stop being sick and rejoin the world?
It’s like I’m taking this huge hiatus from my life, but I know that’s not the case. This is my life now, I have to learn to accept that and work with it.
The learning to accept and work with it, it being MS and these disabilities, was what was holding me back. Its hard to know where to start.
That goes for anything that happens in life. A new baby, a new job, a break-up, stress related situations…what are the steps for learning to accept and work with it?
Sadly, there are no official ones.
But I’ve written a few for me personally. Feel free to use:
1. Step one: breath. That air thats in your lungs? Proves you still have life. Rejoice in that.
2. Go to starbucks. (Or a place that brings you joy. :D)
3. Meditate on something that is stable in your life. Something that has never or will never change. Be thankful for that.
4. Meditate on that thing that is not stable in your life. What is it that you are most nervous/scared/sad about?
5. Why? This is the hardest part. Figuring out the “why?”. But this is also the most important part. Because if you can not figure out the “why”, you can not move on.
6. Once defined the “why”, decide on 1 thing, just 1 thing that you can concretely to do help fix the why. Make it small.
7. Do it.
Seems easy enough, right? I will do my steps 3-7.
3. Flowers, roses particularly. I know it seems silly but roses have always been and will always be in my life. They make me happy and are seen as a stable blessing from St. Therese. Rejoiced.
4. Im scared that I will not be able to “rejoin life”.
5. Why am I scared? Because I will always be a step behind, stuck at home, the kid who lost out on life. I am scared that life, and people, are moving on without me. I look on fb and I see others living lives, summer vacations, beach parties, road trips and wonder, when/if that will ever be my life again.
6. 1 thing to fix it: my concert goal (oh wait thats not small :D). My goal is to make it to the Farm Aid concert on September 22nd. Who can say after attending that concert that they have not “rejoined life”? My small thing to fix it in the meantime is to start addressing life again. To appreciate the friendships that I do have. The love the people who send me cards and letters of HOPE. And to enjoy this life that I am gifted with, MS or not.
7. Do it. Yes ma’am.
So there you have it. My sparkle is back. My hope continues.
This witness is not just a witness of my life…this is a witness for all those who have Multiple Sclerosis. I think of them too each post, in hopes that these silly, Elizabeth-ismed words can provide hope, encouragement and awareness. We will find a CURE. Maybe not in this life-time. But we can be the warriors for the next one.
Thank you, to all those who support me. Here we go!
Love, Eliz
more than a moment
Life feels relentless, and as it is beautiful, I wonder sometimes if this quest fulfilled by perseverance and courage ever becomes less of a struggle for more than just a moment…
This was written by a good friend of mine today. It defines this day perfectly.
This blog’s purpose is to provide hope for myself, others with MS, my family and all my readers.
However, today’s post, might not be as “cheery” as others. Because honestly, today was not cheery. It sucked.
This morning I woke up with a horrific headache. The cause of the headache could be from a various of things: my Rebif injection I took late last night, my lesion, my other medicines, heat, stress, tense. Just like everything else with MS, there is no bulls-eye answer, so thus no bulls-eye remedy.
Along with my headache came the inability to speak. My words stutter on the tip of my mouth. I have so much to say and yet, I am not able to say it.
I wake up every morning with the same thought “new day, more hope, I will get better, lets fight this”. And every day MS keeps beating me back down.
Will this ever become less of a struggle for more than a moment? Please?
(moment pause)
As I always say, there are never bad days, only bad moments. Today had some bad moments. But it had good moments too.
For one, I showered. A darn cold shower (how I long for a hot shower hah) and even shaved my legs. TMI maybe but for those with MS or those with tremors, this is a big Occupational Therapy moment. No cuts either!
I biked on the recumbent bike for 20 minutes. That was good physical therapy.
And for all those pinterest lovers, I did another pinterest craft for OT. It was quite easy and just lovely! I’ll make a separate post about it so I can “pin” it. (:
I keep having to remind myself that it will get better. But I’ve also been telling myself that for the past 5 months.
The best we can do in hard times is keep our heads up and “sparkle”. That, as I was just reminded, can never be taken away. You are born with it. Your “sparkle”, whatever it is, will always be there. You can hide it from the world or you can embrace it and use it to your advantage.
Which is what I will do. I will just continue sparkling. And hoping for a moment. And a better day.
Love, Eliz
