I hate multiple sclerosis. I hate myself for getting it even more.
I really don’t hate myself I just get so mad sometimes. I just don’t know who to be mad at.
So who’s to blame?
I guess no one.
Since I really have no one to point my anger towards, sometimes I just internalize the resentment. I try to stay positive but it doesn’t always work. Everyday at some point, doubt creeps into my mind about my ability to maintain this battle against the catastrophic effects of MS. It causes everything to be put on hold and defers episodes of my life. MS is constantly evolving; sometimes everything is okay and the next day a crisis occurs. It’s like a dark cloud continuously hanging over my head causing me to repeatedly look for a break in the storm.
Everyday I dream of a silver lining that will nudge me forward when it seems that all hope is gone. Those rays of sunshine that help me make it through the day. And just when I am about to give up, it reveals itself. Sometimes it isn’t obvious and I may miss it at first, but once I open myself up to receive it and pay attention…BAM! There it is!
It might be a call from a friend or a message from a stranger on the Internet. Sometimes it’s the FedEx guy delivering a package and asking me how’s my week going. The other day I was feeling tired and weak then I remembered it was my mother’s birthday and I temporarily felt better.
I have never won the lottery but these rays of sunshine that I receive everyday are at least a small blissful equivalent. I believe something positive always appears after something negative has happened. So whenever I’m down because of a symptom I try to look for the positive that I know is coming.
Hang in there! I have had many of those exact days since my diagnosis in 2009.
You are not alone – there are so many fighting this disease with you.
Joe, that’s one of the things that keep me going!
Hi Nicole,
Great blog, and great post. Since I was diagnosed in 2009, I have had many of those days! Hang in there! It is a battle everyday, even when you don’t feel like fighting it.
Joe
Right there with you girl.
Your website is perfect when you are having a rotten day–where else can you get “pick-me-up” messages from all over!
Although I resent my MS from taking many things away from me, I have been able to accomplish some other things that I have always wanted.
Best to you.
Sock, You just made my day! I’m so glad you were able to get the pick me up there.
I often wonder if they are overlooked.
I know days where I feel like you describe. I usually find myself repeating the refrain from two songs, “Mama said there’ll be day like this. There’ll be days like this my mama said.” and “There should be sunshine after rain. there should be laughter after pain. these things have always been the same. So why worry now?”
I understand what it feels like to always feel like the shoe is about to drop. Try to have some confidence you and those who support and care for you can catch it.
I hope you find some good news for your ray of sun shine soon.
Well lived, I like the thought that my support team and I can catch that shoe.
Hi Nicole,
Sometimes I still wonder why I got MS and I usually just become sad rather than angry yet I think both are reasonable responses to such thoughts. My pastor recently made a comment that we should consider changing our perception when confronted with afflictions from, God why is this happening to me, to God how are you going to use this to help someone else? All I can say is that it has sure changed my response to life and I personally can attest to the fact that God has used your writings of your afflictions to help me! So thank you once again and may you see a little sunshine today.
Tim
Tim, Thanks. I think you hit that one head on. Suddenly it becomes more about how I can help someone else with their reality by sharing my own.
Nicole,
I look for the little things to keep me full of joy. As my childhood pastor always said, ” Keep looking up!”
Marcia, That sounds like a good idea to me! Your pastor knows best!
Nicole,
Its the little things that bring me joy. Remembering the laughter from jokes told by one of my dear friends that recently passed suddenly has been keeping upbeat lately. As my childhood pastor always said, ” Keep looking up!”
Marcia, I agree it is the little things.
I can relate to what you write about — please continue to read the book You Are Not Your Illness. It has really been helpful to me throughout this journey — especially when things are difficult to bear. Keep writing, I hope it is helpful to you as it is for us to read(and as it often is for me!)
You are an amazing spokesperson for those of us who struggle with the ups and downs of managing a chronic condition like MS. The sun is always shining above the clouds — keep pushing upwards!
Linda, Thanks for reading. I have finished the book. Guess I need to read it again!
Sometimes those positive moments are few and far between, but searching for them is always rewarding. Stay joyful!
Peace,
Muff
Muff, I think if II open myself to more…. Thanks
Thanks for the reminder. Sometimes we get so caught up in what’s wrong that we neglect what’s right…have a wonderful,painfree day/week.
Bonita,
That’s exactly right. I tend to get caught up too!
Good read.. as always.. I recalled something as I read this.. just yesterday I received a call from a former co worker with whom I had not spoken for some time.. this was truly a ray of sunshine.. and not a short call.. this one was full.. with shared thoughts going back and forth.. a banter that is all to uncommon for me.. you have no idea how I welcomed that call.. Ella
Ellajean, I truly know what you mean. we haven,t known each other for long but you can contact me and I would welcome exchanging numbers. Maybe we can make new memories!
Keep looking for those sunny rays Nicole, negative energy will keep you from seeing them. I know, easier said than done but drag MS where your spirit wants to go. Refuse to go where it wants to take you. A major task, but energy well spent. Have a very sunny day
Kim, great advice. I like the picture conjured in my mind of me dragging MS where I want to go, with it putting on temper tantrum like a child!
Nicole….I really hope you got the phone message I left last week after reading the Times Picayune article about you. My mom and nanny were in the kitchen when I came upon an article about a local woman with MS….that woman was You. As I read about all you had been asked to do by the airlines and all the important industry people who had gathered to hear you speak and educate them about how to improve air travel for those with MS and other disabilities…..I literally wept. They ran over to where I was reading as they thought I had just learned about a tragedy. Well…It is a tragedy to have a progressive form of this disease. No doubt about that. But my tears were because of how Brave and just amazing you truly are. When we were neighbors, we lived next door and I didn’t know until a year later that we both had MS. You were still working insane hours and I clearly remember you learning to rollerblade by going up and down our street! You were determined to master those durn roller blades that night and went up and down Aline St until you felt satisfied you could ride well enough to go to Audobon Park. Nicole….you are that SAME DETERMINED woman today. You are touching many people’s lives and giving a voice to other’s with MS, disabilities and educating wherever you go. You and Tommy are a powerful symbol of love and support and partnership at its best.
You may not feel positive and being angry is normal I think but you don’t allow your sadness and anger to stop your advocacy for MS. I am proud and so blessed to know you. You are a sort of Hero and most definitely an Inspiration. Angels come in very unexpected packages. God has got you Nicole. We may not know how our life will turn out and not one person is guaranteed a life without pain and loss. God knows how much loss and pain you have had but your suffering has been a beacon of Hope for others. I love you
Wow Andrea you brought back some seriously old welcomed flashbacks! Thanks for that. Thanks for reminding me of the spirit not even MS can take away! Thanks for that.
May rays of hope and sunshine descend on you always.
Judy,
Thanks. I send it all your way too. Well maybe not all just a lot!
Great email Nicole. You say exactly how I feel some days. Have a great week.
Elaine, You have a great week too. We both deserve it.