“So…what exactly do you do all day?”
This is a common question I have received since the day I was diagnosed with MS.
At first, the question made me anxious, for I wasnt doing much of anything with my time. Then I would think that people were judging me for not doing anything.
Then it turned into disgust, as if how dare someone ask me that. Cant they see I’m doing the best I can?
When really, the true life story is: Im sick, with an incurable disease, that’s kinda serious, followed with a few disabilities.
But regardless, see below:
Im fighting a tough fight. Everyday
Im sure some people think that I sit around everyday, eating bonbons (is it sad I dont even know what a bonbon is? Chocolate?). Or that I could be doing so much more.
Looking at my facebook, or even the posts on here, it seems as if I am very active. I take trips, I lunch, I do this, I do that. I even take vino days.
But that’s part of the “sparkling” factor; its hoping in those good days, and praying more come. Because these arent the “everydays”.
Reality is, most days I wake up late because I couldnt sleep because the day before I took a pill to help with fatigue that then caused insomnia. Vicious cycle.
I then spend a few moments with my brothers (who are home-schooled) and my mom, making sure they are confirmed of the below:
Afterwards, my “errands”, which usually consists of the post office, Walgreens and of course, Starbucks.
Everything takes about 2 times longer than before. Getting ready, getting in and out of the car, shopping, whatever it might be; I do not rush, I cannot rush, I just take my time. (Oh my gosh…Ive become that lady that pays with pennies when there is a line of 20 people behind her. Ok, not really. Or if I am, someone stop me please!!).
My schedule is also filled with doctor appointments, medicine pickups, MRI’s or other various medical experiences. Each one of these topics has a wait period associated with them. Just today, my 15 minute medicine refill wait was over half an hour. You learn to chill.
I usually get about 4-6 good hours out of a day; 8 if I take a vigil pill and a vitamin B injection.
Which means…lots of naps. Or just relaxing time. I need recharge battery time.
In order to keep my physical strength up, I try to bike a few times a week. This is tiring but in the overall scheme of things, I know the benefits.
And then there are the DIY’s. I was never a craft girl. But, I made a resolution to become one. As known, I have difficulties with fine motor skills. Also, with MS, it is always good to keep your brain moving and grooving. So hence, DIY. I try to stick to quick and easy projects but maybe one day I’ll move up in the world.
I get my nails done every other week, pedicures monthly. Massage monthly as well. I try to stay up on looking good so when people ask “How are you doing?” I can now respond “Well, at least I look fabulous!”.
Moral to the question: I do what I can. I never know how much energy I will have that day. I actually dont even know till the hour.
It’s difficult, as that quote above states. I was a busy body. I was always looking for the nightlife, the fast life, the work life, the social life.
Now I spend countless hours in bed switching from normal nerd glasses to computer reading glasses. Going from wonderful WTH moments to calming myself down with “this is life now” moments.
I am fortunate. I am still alive. And I do get to have good days. With friends, family and puppies. I have good doctors and medicine (all that is worth the wait). I have enough energy to still do the things I love, even if limited.
And while yes, I am fortunate to remain sparkly and positive (through what graces or powers these are brought are out of my reach), there are many with MS that do not have this fortune. Depression is a serious side effect. So many MS sparklers have reached out to me, telling me how hard it is to not be able to get out of bed, to feel as if they are losing out on everything.
Hope for them. Hope for us!
So in summary:
I live daily with MS. Its hard, its changed everything, but I do it. What other choice do we sparklers have?
Live proudly loves!!!
Love and sweet dreams, Eliz
let me paint you my thursday evening picture.
its 10:30pm. I’ve been lounging in my bed, in my little pink with zebra accent room, with sputnik curled at my feet.
In my hands is a cup of tea: acai berry and lemon ginger. To help with sleep and detox. A great mix.
The only light is coming from a candle that I “borrowed” from my mom. Its providing a great, candle-like glow.
For the past 20 minutes I’ve been staring at my computer screen. At a specific picture actually.
Not many thoughts are crossing through my head. I spend 20 minutes reading and re-reading those words. Trying to find hope in them. Trying to find the sparkle in them.
But, as you can see, it’s pretty black and white. The hope and the sparkle, after 20 minutes of “searching”, I realize has to come from me. And I’m not quite sure how.
Today was suppose to be an easy visit to the Neurologist office. And I’m sure compared to the many others that attended that office today, my experience was minimal.
I went with a list (I have a list for everything) of the 4 top items/questions that I had.
3 of the 4 were pretty straight forward. “Dont hold me to this number but this is the norm”, “Maybe” “Hopefully”, the usual answers. Nothing too shocking.
The 4th however was a little heart-breaking.
The symptom that led me to attend the ER March 21 2012, receive my first MRI and cause me to be diagnosed with MS, was numbness/tingling in my feet and legs. Its as if your foot fell asleep but never wakes up. You go to stand and you cant feel your feet. Walking becomes extremely difficult.
Over the course of the past few weeks, these symptoms had come back after an 8 month hiatus. I wake up in the morning and hop (ok slug) out of bed and it’s like “wooh, feet, time to wake up loves!!”
I had gone a few weeks just figuring it was the weather (I mean, it is freezing outside!!). But today decided to mention it, figuring it would be confirmed as “just a short come back, no need for worry”.
Instead, it is believe it might actually be another (ANOTHER) active lesion, a flare up. Which means another ride in the “white donut” aka MRI. If it comes back active then steps will be made to help bring the activity down. I made it very clear that steroids and I are not friends so we will go a different route.
Yet again, another visit that all answers lead to the all over-bearing MRI results.
Yet again, another possibility of an active lesion.
Yet again, another possibility of nothing being able to help provide any relief.
Yet again, me trying to find that hope and sparkle to get me through.
I have to remind myself of how far I’ve come. My stubbornness pays off so well.
Hear my speech compared to 6 months ago and you’ll be amazed. I’m down to one crutch for short distances (though I still fall once in a while. I find it funny). My fine motor skills are continuing to grow; 7 months ago I couldnt raise a fork to my mouth. Tonight I waxed my own eyebrows. A risk perhaps but I am glad to report that I still have two (nicely shaped) eyebrows.
But today’s adventure shows the true course of Multiple Sclerosis. You dont know. Your body is like a ticking clock and you are just not sure what might go next. And there’s no stopping that clock.
I want to yell FUDGE you MS. I am so frustrated. I can do all that I can but really, my life and this disease are not in my control.
So I stare at a black and white picture with words that I hold on to as my hope, as my sparkle. I have to trust that there will be a cure or some new research with answers. I have to trust that God wouldnt bring me to a mountain I couldnt climb. I have to trust that I am surrounded by people that love me, no matter what. I have to trust in myself, that I am strong enough to make the black and white sparkle.
I have to remember that while MS might have control over my nervous system, I have control over how I react to the situations. And though I may have a bad day or seem lost, I must keep my head up.
After all, my princess crown will fall. (:
Love and sweet dreams, Eliz
(this has nothing to do with this post but I thought it adorable)
A side effect of MS, which I have already expressed here, is fatigue. I have unfortunately been gifted with this side effect.
I have daily enhancements to help with the fatigue.
But its still a fight.
Due to this, my days are specifically planned to take into consideration fatigue and my energy levels. I believe we’ve come to a pretty good balance in my life.
And by we I mean myself and fatigue. We still have a ways to go before we’re friends.
While in rehab, I had daily schedules that began at 7am, included 5-6 plus hours of therapy and then visits, etc. However, since leaving rehab, I havent really had such long days.
Yesterday however, as this blog title represents, was the longest day in my career as a MS Sparkler.
The schedule went something like this:
9:00 am - Hair blowout and hand massage to prep for the below
10:15 am - Visit DMV. Get new driver license. Officially a PA resident. (I should mention this is a huge deal. Ive had an Ohio license since 2008. And havent lived there since 2010. Woops).
10:45 am - Thankful for a quick DMV visit (can you believe it?!?!) and head to a random post office to send in my disability / princess parking sign papers. Apparently they only accept them through the mail not in person. #fancy
11:15 am- Starbucks. Venti Iced Soy Two Pump Pumpkin Spiced Latte please.
11:45 am - Decide to drive into the city early. Reason: MRI. Start to become nervous. Good friend Reg makes a fabulous move and says she’d meet me at the hospital. Or else….
12:00 pm - Drive to city. Tunnel version.
12:20 pm - Arrive at hospital. Realize there is no way I can make it from parking garage to actual hospital entrance. Valet. $8. #perfect
12:25 pm - Although having been to this hospital many times (and spent many a day “living” there), I realize I have never “walked” in this hospital (besides PT work).
12:30 pm - Take a chill break in the lobby. A rush of emotions takes over me. Reality check of my life. But hell, I drove here. I walked in. #bettereveryday
12:45 pm - Go to check in at registration…they dont have me in the system. May I remind you, I lived there for over a week and have visited many times. #hospitals
12:50 pm - Go to admissions. She finds me and all my paperwork in the system. Prints off all my info at MRI registration so they’re aware that I am indeed “in the system”. #mykindofwoman
1:00 pm - Chill in MRI lobby. Look around. Im the only one under age 50 and pretty much the only one with a walking device. But I looked cute. #confidenceboost
1:20 pm - BFF Reg comes to the rescue, starbucks and all!! Of course as soon as she arrives its a whirlwind of moves and room changes and injections and needles. But was so thankful she was there.
2:00 pm - MRI time. Recognize the face of the MRI picture taker as the guy who inserted contrast in my vein, which failed and the contrast went into my muscle/places it shouldnt. I had tried to explain to him that “hey, this hurts” and his response was “only a few more picture and you’re done” and rolls me back in. But it legit hurt. My arm was double the size and had to get some pain meds/IV after that adventure. Fortunately, he did not put the contrast in me this time. #thankful
(the past contrast fail).
3:00 pm - Done!!! Decide it was treat time.
3:30 pm - Enter cheesecake factory. Spend quality time with reg. Laugh, tell stories, joke, talk girl things. #whatwedobest
5:00 pm - Head home. Traffic. Though Pittsburgh traffic does not compare to DC traffic, it wasnt exactly lovely.
6:15 pm - Home. Bed. Sleep. (:
Even though yesterday was very long and I did get tired by the end of it, it meant a lot to me that I 1, survived and 2, could do all that my schedule included.
I have good days and bad days. Which I remind to people who say “But you’re doing so well!!!”. Well yes I am, you only see me on my good days.
But the bad days arent as bad as they use to be. Which is encouraging.
And I survived a hospital visit which couldve been my haunted house adventure if I had let it get to me.
Which brings me to a point: how you react to situations is all up to you.
Things are going to come rushing at you, good and bad. Sometimes we do have an instinct nature to react a certain way (such as, stinkbug = yell for brother to come and kill and flush). Others though, we do have the ability to react wisely.
I found myself alone, in a hospital, in a big city, re-living the worst days I have ever had so far in my 25 years. I thought I was going to handle it just fine. Once there, I realized that this situation wasnt exactly “fun”.
So I sat and chilled. I calmed down. I realized I am better today and that is what I must focus on.
And then I moved on.
Thats how life is. You have to move on. If you dont, then you’ll be living a life of saddened regret.
Learn from your past. Dont let it hold you from your future.
With love, Eliz
PS: For those that didnt see my facebook post, I played the piano for the first time a few days ago. “Dont cry for me Argentina”. #bigmoment
PPS: Sputnik and I were trying on halloween costumes today. He didnt like the tu-tu. We’re still working on ideas.
- Source: facebook.com