By Penelope Conway
No one hates multiple sclerosis more than those of us living with it. When something happens that I can’t do anything about, I used to get frustrated and even angry. I hated not being in charge of my life, my brain and my body. MS gave me a wake up call on that kind of thinking.
My mental health was in danger of collapsing. Does that sound like I’m over-exaggerating things? Well, I’m not. Life was changing too fast and I was caught in a mental fog of weariness and disbelief.
The morning after my diagnosis I awakened and for a moment not just forgot what I had planned for the day, but who I was, what day it was, where I was and basically everything and anything about life. That was my morning wake up experience.
For a few minutes I sat in my bed and my mind was completely blank. Nothing, and I mean nothing, was there. It was a weird feeling. Most of the time that kind of thing happens when I’m startled awake from a deep sleep. It just takes my brain a bit longer to wake up than the rest of me.
I found it hard to explain to people what I needed and why that need existed when the person I was talking to couldn’t physically see the struggle I was facing. Opening your heart up like that can be a scary thing. After all, you are sharing a weakness and need with someone hoping they will handle it with care and support. That doesn’t always happen, but it’s important to try.
Because of MS, I have learned that sometimes in life we aren’t going to know what to do, and that’s okay. Sometimes, we aren’t going to know why things happen, how to fix them, or when or if they will get better. Sometimes, we are going to stumble our way through our day…many times literally. Sometimes we will find everything going well, then all of a sudden get slugged in the gut from out of nowhere with circumstances that change our day and life forever.
Sometimes life just is. As I say many times a day…it is what it is. I could allow everything in life from MS physical challenges, unbearable pain, financial difficulties, and emotional stress wear me down to the point of collapse or I could hang on when I’m at my weakest and cling to the hope that everything will to be okay and remind myself that my life is full of meaning and purpose.
When you’re in the middle of something awful, it’s hard to believe that things will work out. It’s hard to even believe that you will make it to tomorrow with the weight you are carrying and the dark clouds that are looming, but I can assure you, you are going to make it.
Think back on everything you have been through in life. Some of the difficult times seemed impossible to endure and had you sinking in despair. You have been hit with some awful moments. Things that even the bravest and strongest of people would collapse under, but you made it.
You are not alone with your MS struggles. No one living with MS has an instruction booklet on how MS is going to affect people or something that shows them what they should do with each new challenge or symptom they experience. MS didn’t come nicely packaged in pretty wrapping paper and tied together with ribbons and bows. If it did I would give it back…with a wedgie.
When you start to feel lost along your journey, try not to hide yourself away. Step out from the fears and keep walking the road laid out in front of you. Even though MS may be difficult at the moment, I know you can do this. I know you are going to make it.
Divide your day up into small segments and celebrate each one that you complete. Did you wake up today? Check! That’s your first victory to make note of.
You will find by celebrating each moment, that your day is filled with many more victories than defeats. Then when your day is over, you will know that you fought great battles, and although bruised and limping…you made it!
*Penelope Conway was diagnosed with Multiple Sclerosis in November 2013. She is the author and founder of Positive Living with MS (positivelivingwithms.com) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.