I came across this today from another MS sparkler. I figured I’d let someone else give the words today.
Keeping up is exhausting. I’m finding it harder to say “Hey, I’m alive!” because to be honest, I feel terrible. I need to come to terms with the fact that my body doesn’t snap back in the same ways it once did but, it will so long as I give it the rest it screams for. My biggest fear yet is simply admitting that. I know these cards were not handed for me to suffer, but to soar.
Amen to soaring.
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!
There would be times in the hospital where I would be just too tired to try to talk; this happened usually at night.
So I discovered the power of “the thumbs up”.
“How am I doing? Hows my pain? Did that injection hurt? Are you ready for bed? Do you have an adorable puppy?”
insert thumbs up
The past few days have been challenging, today especially. Its discouraging, after all thats been done, to not see huge, positive, responses in my symptoms. You have those challenging days though.
I keep having to reread what I write to encourage me to keep moving on and to keep positive thinking. Basically, have to take my own medicine. Shoot. I knew I shouldnt have sparkled too much. (:
Today I decided to conquer my closet. Since my sister and I moved out, my mom moved most of our things we didnt take into “the closet”. Who knew what awaited me as I started to clean.
I considered it therapy too. I have a hard time reaching and moving things with my arms. So this was good, efficient, practice!
I discovered many treasures buried in this small closet. I found the letter my boyfriend wrote the night we met, a letter my best friend wrote two years ago that still describes our friendship, lots of letters from parents of students I was an Admissions Counselor of, a stash of old pictures my sister was hording (there may have been a reason for some of them…dont worry Court, I wont post :D), and basically every letter/picture I received during my college years.
It reminded me of how loved I was pre MS. How I have had a really good run pre MS. Sure, there were hardships. But it really was a nice ride.
And now, I have a stash of cards to let me know how loved I am post/during MS. And I get to have a really good run post MS. Its going to have hardships. But at the end of the day, we will make sure it is a nice ride.
So how am I doing?
My dad. He’s a goofball, hardworking, stubborn, intelligent engineer who has helped raise a family of 6 crazy kids and maintain a strong marriage with my mom.
He’s worked harder than most in his life so that our family can have a life that is truly blessed. He has helped us get through college, take fun vacations, have a nice house and overall, have a good life.
As stated, my dad is very stubborn. And persistent. When little, he would take us kids on bike rides. For most families, a bike ride would mean a one mile treck around the neighborhood. For my dad, a bike ride meant usually anywhere between 8-20 miles and water was only provided if personally supplied. We would persist but usually at the end we would be glad that we participated. Indirectly it taught us all to keep pushing, no matter what. Life doesn’t stop; you might as well be a step ahead.
In December he had a bad bike accident, breaking and having to have surgery on his ankle. It didn’t stop the guy. He persisted, he pushed, he made me cheat and take him driving even though he wasn’t suppose to. And now, though still recovering, he is back on his bike daily.
Dad, thanks for being my inspiriation through this. Though we have different physical hardships, I can still learn from your witness. I might get frustrated at your “pushing” sometimes, but I know that by fighting daily I will be better off. I may still have the same disabilities at the end of the day but I’ll be able to accept them with a smile and pereserverance.
Today, after I completed my physical therapy, I did an extra 15 minutes on the sitting stepper, just for you. (: love you Daddy.
Happy Fathers Day to all dads! And thank you for all those that encourage me to keep fighting!