“I love sleep. My life has the tendency to fall apart when I’m awake, you know?” ~ Ernest Hemingway
As I pray tonight, I’m not sure what to say. All I know is, things haven’t been going my way. It’s like I’m living my life in slow motion. Starting each day in the back of the line. Spending my time struggling to get ahead. And when I try to run and catch up with the rest of the world, I fall face first to the ground. Tripping on my fears as all my inadequacies constantly flow through my head.
I don’t know when this started happening but somehow I’ve created a determined pessimistic attitude. It’s not always there. It comes and goes. But when it appears, it seems to take over my world. Bombarding me with uncertainty. It’s like Satan serenading me with negative thoughts. Keeping sadness around me. His tongue so sharp, when I try to ignore it, I get caught on its edges. Cutting into my flesh. Striking me every time I try to escape. Telling me how horrible the rest of my life will be, until I’m saturated with doubt.
MS isn’t something I can eat away, wish away, or medicate away. So I have to think of coping mechanisms and find some kind of escape. Therefore I reach for support from the inside. But the bad thoughts make it hard to live my life in real time. These destructive concepts can be so loud they drown out all positive ideas. That’s when I close my eyes and I silence the moment, so I can find a remedy.
When my judgment becomes cloudy, I take a break. When I’m weak, I ask for help. When I’m in pain, I look for hope. And the biggest thing I do is dream. In my dreams anything can happen. And that experience is the most liberating feeling ever.
These alternatives, to my negative thoughts, aren’t perfect solutions. But sometimes it’s all I have. And with so many distractions happening around me, answers can be hard to find. I just try to remember; when relief speaks in whispers you have to be quiet to hear it.
Nicole:
I will be thinking about you today! This “disease” is a “bummer” i am dealing with this as well and it isn’t fun! Prayer and reading the Bible helps me…
Take care!
Michelle
Nicole, thank you for sharing your thoughts—you have a gift for putting into words exactly how I feel. It’s almost soothing to read your blog and to know that someone else feels the same way I do. Love you for sharing your thoughts about this disease!
I’ve had this disease for 30 years approximately and still not finished figuring out what it’s all about and why it happens. You help me a lot in working through things. Thank you
Nicole, I just found your blog. Sigh. I wish I could say that you are “doing it wrong,” but as is evident from all the other replies, plenty of us understand how awful things can be. I have had MS for a very long time, and thought I had learned my own ways of coping, but then about 2 1/2 years ago, I had to stop working and now I’m on disability. It sucks! I have to fight hard every day, and unfortunately, that probably won’t change.
But I want to commend you for expressing yourself – it helps a little, right? You are positively gorgeous! Do you realize that? I know that information doesn’t help you with the conundrum that is MS. But part of who you are is that you are beautiful, you are creative, and you’re a fighter. And I have not even met you.
it’s only when we face our fears, doubts and the darkness that we can even hope to move beyond them. the challenge comes with not wallowing in the sadness and depression… friends, family & loved ones want to help, but it is in our own hearts and minds where we can find the strength to step up & carry on. it’s not always easy, but each day we’re given a new chance to move forward, it’s our choice what we do with that…
and big hugs help too! so i’m sending a big one your way, Nicole. you inspire many to hope, and we all care for you.
Dear Nicole, Thank you for all your writings, because when I feel alone in my MS cocoon, I can feel connected to someone who UNDERSTANDS and then I feel encouraged to continue finding ways to fight the downtimes and pessimism that my symptoms bring with them …there is no perfect solution, but you are an inspiration to so many of us. Dreams are a vacation from reality, and sleep is our ticket – enjoy a good night’s sleep 🙂
Consider investigating a mindfulness meditation practice. I too am plagued by doubts and destructive thoughts and circular head noise. Conscious breathing and focusing on my breath makes a huge difference in my life. There are many many teachers and techniques and methods. All you need to do is close your eyes, and focus your attention on your breath – in, and out. You will lose focus and get distracted – even long-time practicioners do – but rediscovering your breath and returning to it is what the practice is about.
Thanks for sharing your thought. I feel this same way. I would like to say some of the time. Lately most of the time. Feel as if I am always fighting my way back up.
Just to be knocked down by a new symptom. But always push push push to be my normal self. Never to be that person again. Just trying to figure out who I am now.
NICOLE, I KNOW HOW YOU FEEL..I WAS ONCE THAT WAY, BUT I CAME TO THE REALIZATION THAT THERE IS ALWAYS SOMEONE OUT THERE WHO IS MUCH WORSE OFF THAN ME. IT KIND OF PUTS THINGS IN PERSPECTIVE. MS IS A DAILY STRUGGLE. FOCUS ON THE THINGS YOU CAN DO & KICK ASIDE THE THINGS YOU CAN’T. POSTIVE THOUGHTS.
It’s impossible not to have this feeling. I get so angry when people try to tell me to find things to be positive about. Really?? Tell me, what is positive about this progressive debilitating disease that has paralyzed me. It’s our right to have whatever attitude we choose to cope and get through another day.
In trying to empathise with you, I thought I’d share some of my experience.
For years, I ignored my MS & made some big decisions based on that denial. Prob not so smart! Then gradually I’ve tried to accept it (that’s a WIP). Less spontaneity now but I’m finding my way on my terms. My family calls it ‘Tina time’. I’m finding some joy again with a different perspective. Be kind to yourself. Wishing you well.
I feel kind of the same I have no positivity left. You are strong and have ope.
I’ve been fighting feelings too. I get frustrated because my clarity, sharpness and memory fail me when I try to use them the most. Then I get worried…about everything. No matter how bright the future should look I start doubting myself. I even stopped taking certain antidepressants and anxiety medication because of the way it makes me feel. My confidence seems to go out the window and I’m told to just be more confident. Sometimes I fall in that trap and think it’s me again. Thank for saying that we can’t eat, medicate or wish ourselves out of MS. God knows many of us have tried.
Hi Nicole,
Hope is the things with feathers-
That perches in the soul-
And sings a tune without the words –
And never stops at all-
Emily Dickinson
This is the first verse of a little poem that has sustained me during difficult times. I can’t exactly say what it is that speaks to me but there is something that I identify with… for me the poem is about grief and hope with hope never abandoning.
You have such a gift for writing I hope you never stop.
All your words explain a lot of the feeligs I have frequently . So hard to explain to those who are not experiencing it first hand. Can be very frustrating. The other posts also prove that we who are in the midst of this disease understand it can be so hard when you know that every day, for the rest of your life it will be a little more difficult. Hope is the main thing that we all must share. Sometimes the smallest things during the day can have such an impact on my outlook, be it good or bad. You are not alone. Be strong- yes, easier said than done, I know.
The line “so hard when you know that every day, for the rest of your life it will be a little more difficult. Hope is the main thing that we all must share.” speaks to me. I have been struggling with this, but wasn’t sure how to say is. Thank you! It is so hard to think that this is the “best” I’ll be. I had no idea when I was diagnosed how difficult this journey would be.
You’ve touched on exactly how I feel. Thank you for your thoughts.
I feel for you. It is abnormal and expected, ups and downs and downs. My awesomeness creeping downward. It is tough. I found Zoloft helps. Not a cure for all downs, but helpful. Some periods are rough… and long.