Clouds come floating in

“Clouds come floating into my life, no longer to carry rain or usher storm, but to add color to my sunset sky.” - Rabindranath Tagore

I just love this quote because it serves as a great reminder that, yes, the clouds will roll in, bringing in the darkness that MS sometimes carries, yet, somehow, through the storm, there is something good and positive to look for.

Dwelling on all of the bad stuff that may come with an MS diagnosis will really drive us crazy as we chant “why me, why me.” Some things are not meant to be understood and we should try to move on. I do this by focusing on doing things that I enjoy. Try as I might, it does work.

The stuff I love includes riding my bicycle really, really fast, taking pictures, reading, writing, planning a trip, wandering and exploring, gardening, laughing, watching movies and all kinds of other goodies. In doing this, I forget for a few moments, hours or days, that I am someone living with Multiple Sclerosis. Any darkness hovering over me lifts and I move on, enjoying the gorgeous colors of life. Corny, I know. But, it works.

You see, by focusing on doing the things I enjoy, the burning sensation in my legs drifts away a little bit, the numbing and pain seemingly weakens. The fatigue may stay awhile but when focused on doing things I enjoy, like watching an awesome movie, that feeling of “I hit a brick wall” diminishes. Do my MS symptoms go away? Nah. They simply fall to the background as I focus on doing stuff that deters me from constantly thinking about on the numbing and pain that I always feel.

Receiving an MS diagnosis can be devastating. No doubt. It brings hardships that can be very difficult to endure. I think lessening the load is important as we try to remember that there is so much great stuff in life that can really bring us a lot of joy.

How about you? What are some things you enjoy doing? To help brighten your days and help you dwell a little bit less on MS symptoms? Would love to hear from you.

Best,

Christie

Working It Out

Hello, hello! 

Below is another great video from our friends over at Shift.ms that talks about the challenges of MS in the workplace. They put together a great list of tips, too. Have a watch.

Take care!

Christie

Without you is something I cannot imagine

Hand Heart
(c) Claire Louise at www.puppyfat.com

Dear Friends,

Today is National Friendship Day and I want to celebrate you as I truly value our relationship. You are all important to me as we navigate, together, the journey of living with this intense neurological disease, Multiple Sclerosis. 

This blog started off as I place for me to express the emotions and feelings that came up for me during this “new normal”, as a sort of cathartic process. Turns out, I made a lot of new friends along the way, ones for whom I am truly grateful. 

So, thank you! Thank you for the love, support and hugs, as the months and years following my MS diagnosis have been challenging, scary, funny, frustrating, inspirational, adventurous, creative, interesting and rewarding. Without you is something I cannot imagine. 

Thanks for being there for me and I wish you all the best, always. 

Happy Friendship Day!

Hugs,

Christie

Let go of what you can't change

Photo courtesy of Finer Minds

I really like this quote and it serves as a great reminder for me to think about letting go of stuff I cannot control. But, I will admit, I find it difficult to do this sometimes. Do you find this to be true, too?

Letting go. Exactly how does one do this? I try my best to move through the bad stuff, like fatigue, but sometimes I just have crummy moments, sprinkled with a bit of self-pity. I try to acknowledge these moments and accept that this is just how it will be, for the time being. I try my best (practice to progress, not to be perfect) to look forward to a new day tomorrow. 

I cannot control that I live with Multiple Sclerosis but I can control how I deal with it. Sure, it’s not easy but I must at least try. So, I write, I work, I play, I garden, I shop, I laugh, I photograph, I read, I cycle. These are all things I do that make me happy, that make me forget that I am someone who lives with MS, if even for just a few moments.

So, I guess my way of letting go is turning to things that I enjoy doing, trying to move on with life. How do you get through bad moments during your life with Multiple Sclerosis? How do you let go?

Hope you’re well.

Best always,
Christie

7 days of MS Awareness Week – Day 1

“You’ve got this.”

MS Awareness Week kicks off today and will last through March 9 2014. So, what better way to kick off this important week than with a little video?  As part of a project hosted by Healthline called “You Got This”, I created and submitted a video about the four things I did when first diagnosed. Below is a recap of my chat.

Top 4 things I recommend when newly diagnosed with Multiple Sclerosis:

1. Gather information. I spent a good part of my early years with MS doing a lot of research. I read books, articles and surfed the web for information. It was important and remains important that I understand how those pesky lesions along my spinal cord will impact my life.
2. Start treatment, promptly. First things first, sign up for a Disease Modifying Therapy (DMT) regimen. I was urged by my neuro to start DMT right away and was on treatment within a month of diagnosis. Slowing down the progression of MS is my main priority.
3. Seek support. This is so important. I sought and still seek the love and support of my loved ones. And, I really appreciate the support from my MS friends, on and off line. Thanks you guys, for making me feel less alone.
4. Do something you love, everyday. There’s something to this. Trying to do something that gives a bit of pleasure really helps me, reminding me that there is more to life than an MS diagnosis and doing something I love takes me away from dwelling on MS stuff. Great advice from a great friend.

The best part of creating the video? Healthline donated $$$s to the National Multiple Sclerosis Society (NMSS) and they are doing this with each video posted on their site. Awesome!

 

If you’d like to make a video yourself, have a look here: You've Got This via Healthline.

How about you? What’s on your list of advice to someone newly diagnosed with MS? What have you learned through the years? Stop by and leave a note.  I would love to hear from you.

Best always & hugs!

Christie

As a bad day ends, wake up to a new tomorrow

We all have bad days.  This is especially true with chronic illness, like Multiple Sclerosis, as we encounter moments of pain, numbness, fatigue, spasticity and/or immobility. How on earth do we overcome these aching minutes, hours, days, months or, sometimes, all of our post-diagnosis lives?

I certainly don’t have the answer or a one-size-fits-all solution to offer up. But, I do believe there is something to remembering that with each breath is a new moment. That as a bad day ends, we will wake up to a new tomorrow, to a new day.

(c) C Germans Photography, 2011

Yeah, I wear rosy colored glasses. You caught me. I’m always drinking the proverbial glass-is-half-full.  This attitude, though, keeps me positive, remembering that bad days do not have to last forever. I was reminded of this while watching and listening to Shayne Koyczan (his video, "INSTRUCTIONS FOR A BAD DAY", is linked below). His spoken word in is truly a poetic reminder that bad days do come to close and that we can and should have hope for a better tomorrow.

I cannot pretend to know exactly what my fellow MSers go through on a regular basis - we’re all different. For me, feelings of loneliness and fear sometimes come up. This, plus enduring the physical symptoms of MS, can be difficult for me to manage. I am very hard on myself when I have bad days and I grow frustrated when my symptoms force me to rest or forgo something I was really looking forward to. I get pretty pissed off, angry to find that MS can limit my day(s). Yet, I try with all of my might to remember that the bad days don’t last forever. I try, try, try to wake up tomorrow morning with an open attitude, the chance to begin anew.

Does this make my symptoms disappear? Certainly no. But, trying to float up to a higher sense of optimism really helps. It’s so easy to fall into the despair that our symptoms can sometimes take us and I don’t want that for my life. I’ve got too much to do! So, while my symptoms may remain tomorrow, my attitude is certainly sprinkled with more positivity and shifts towards more hope for a better tomorrow.

"If you’re having a bad day…check your blind spot, love is still there" - Shayne Koyczan, spoken word artist

And I don’t have to live through this alone, do I? Nor do you. Always remember that love and kindness are truly in your blind spot. Just remember to check it once in a while.  I say this because I sometimes have feelings of guilt when it seems like I am burdening my loved ones with my bad days. This makes me hold back, withdraw, and stop communicating about what I’m going through. During a recent and intense “bad moment” I checked over my shoulder and saw love, waiting for me. It’s been there all this time yet as I started wandering down that path of uncertainty and fear, I forgot and lost sight.

So, as I opened up, expressing my fears of a potential relapse (nope, not one, but still got scared) and what this could mean for the days and weeks ahead, I rediscovered how important love is during these moments. I was flooded with emotion and may have even released some tears (a rarity for me, I’m not a crier). A huge sense of relief came over me because I was reminded that I am not alone and found that the day-after-the-outburst was much, much better. I navigated the new day with a different, more positive perspective. A more hopeful one, no matter what showed up.

After all, I have to take the leap of faith that the next day will truly be better.

How about you? How, on your bad days, do you lift yourself up? Do you breathe in new moments or perhaps you’ve got another way to say goodbye to the bad day and hello to a new one. Would love to hear from you.

Best always, Christie

P.S. thank you Mr. Shayne Koyczan for giving me the opportunity to watch and listen to your words. You rock! 

P.P.S. listen to Shayne's words here: this-is-not-just-your-typical-pep-talk-or-instructional-video. 

Top 7 benefits of having pets in our MS life

Image courtesy of MultipleSclerosis.net

I recently jotted up a post on MultipleSclerosis.net about the benefits of having pets in our lives, specifically in our MS lives. Pets are truly wonderful as they help us cope, lift us from feelings of loneliness and depression and get us outside for a bit of sunshine and exercise. 

I’ve got a cat named Hans and he really makes a big difference, especially on the days I don’t feel good. He was my inspiration for the post, Woof, meow, tweet…the benefits of having pets in our MS life where I list the top 7 ways pets enrich our MS lives.

How about you? Do you have any stories about your pet(s)?

Best,

Christie

It’s exhausting being a secret agent

I remember sitting at piano lessons when I was a kid, announcing, “I want to be a CIA agent” right before kicking into a Bach Minuet. My piano teacher said, “Oh Christie. That’s all very dangerous!” At the time I was watching a lot of James Bond movies with my dad and I believed this would be a great way to make a living when I got older. I could save the world while leaping in the air, hanging out of spiffy gadget filled cars driving at high velocity speeds and swinging out of tall buildings capturing all the bad guys.

Well, turns out I did grow up to be a secret agent. It is not nearly as exciting as I dreamed about and it is utterly exhausting.

Allow me to explain.

By day I am a number cruncher for a major retailer and, by night, I am someone who lives with MS. I am not completely out at the office with my diagnosis and the only ones I’ve told include my boss and two trusted colleagues. Yet the espionage work has really started getting to me. The discrete phone calls, rendezvous in the middle of the day and disguising my disabilities. I even took a phone call in my car the other day, to chat it up with an MS buddy. My car has tinted windows so I was able to stay undercover, if even for fifteen minutes. It seems that I am constantly managing The Secret, to ensure my office mates do not find out about my health status.

At what point should I blow my cover?

I believe that I haven’t blown my cover yet. Here’s another great example of some stellar spy work. Last month I encountered a colleague in the hallway while trying to quietly leave the office for one of my monthly Friday afternoon Tysabri appointments. I am pretty sure I was wearing the standard issued dark sunglasses. Okay, okay. I realize that this is not very discreet, navigating through a cubicle filled office space while wearing sunglasses but even spies make mistakes. As we passed each other, my colleague said to me, “Lucky.” Success! I tricked him into thinking I was leaving the office for the day, for some fun filled weekend activity like snow boarding in the mountains or driving out to Vegas or camping by the ocean or jetting off to San Francisco. Little did he know I was on my way to the hospital to sit in an infusion chair for two hours while the big T flowed through my veins.

To the best of my knowledge, my MS remains an in tact secret and no one at the office knows. An incredible feat since I was diagnosed over two years ago! This means that I am either doing an amazing job blending in and the government should seriously consider hiring me for some spy work or I am playing a dangerous game with my psyche.

And, like all good secret agents, I must not panic.

Difficult, I know, especially when you get vertigo and double vision during a business meeting. This happened one afternoon, during a meeting with about ten analysts and statisticians. I told myself, as I began seeing about twenty calculators spin around the conference room, “Just blend in, like any good spy, while they talk about their findings and insights and pray that they do not ask you any direct questions.” And I did. I just sat there, calmly, and listened to everyone, nodding my head once in a while in agreement as I waited for the spinning to stop. “Whew!” It finally did pass, twenty calculators reduced to ten, and I managed not to attract any attention.

You can see why I am started to get tired of all this, right? I often come home to utter exhaustion, plop on the couch and just chill. I am convinced that this under cover work is the culprit of my fatigue. It is often on said couch that I ask myself, “At what point do I just blow my cover, let “them” catch me and relax about who I am? I am a number crunching photographer who loves riding her bicycle really, really fast and happens to live with MS?”

I am sure I am not the only one who struggles with being a secret agent. How about you? Are you out at work with your MS diagnosis? Any good stories you want to share? I would love to hear from you.

Hope you’re well and feeling okay.

Best,

Agent C.

P.S. And, if you are a co-worker of mine, reading these words, do swing by my cubicle one day. We need to talk.

Has MS ever taken over your refrigerator?

During my two years on Copaxone, Multiple Sclerosis took over my fridge. I couldn’t get out the milk for my coffee without being reminded that I live with this complicated neurological disease. Every time I opened the fridge, I saw that blue box filled with fresh needles. Ugh.

The dreaded nightly routine of administering Copaxone would flush my thoughts as I reached for the salad dressing, grabbed mustard for my sandwich or checked to see if there was anything decent to nibble on. Those Copaxone syringes stared at me even if I tried to tuck them away on the bottom shelf of the door, seemingly out of site. Yet whenever I opened the fridge, the lot of them appeared to yell out “HI! WE’RE HERE TO REMIND YOU THAT YOU LIVE WITH MS. NOW GRAB A SYRINGE, PACK UP THE AUTOJECT AND GET ON WITH IT.”

Sure, MS took over my refrigerator. At times, it seems it has taken over my life. 

C.