By Penelope Conway
Living with multiple sclerosis can be challenging. Add the required social distancing and it can make life a bit more complicated and interesting. My groceries are now delivered to my front door making it a bit more challenging to put everything away on my own, my doctors appointments are taking place on the phone keeping me on my toes to remember everything we need to talk about, physical therapy is still taking place each week at my home which is a welcomed visit even if they make me work hard and have to wear protective gear just to come over, nursing visits are also still happening and just as welcomed each week, I get a chance to chat with neighbors out for walks away from the craziness happening as I’m out working in my yard, and I have a place online to connect with others just to keep myself sane.
I guess you could say I’m still doing everything I did before but with a twist. I always say that living with MS changes normal (whatever that actually is) and everyone around me is finally getting a taste at having to find their new normal. Something I’ve been doing since being diagnosed with a chronic illness. If someone could find normal and let me know where and what it is, I’d like to know so I wouldn’t have so much work.
One great thing about the changes is I have had the opportunity to evaluate life a bit more closely and get rid of the toxic people and unnecessary things that were making life harder… without the added guilt. I have learned the benefit of good things over the need to always have the best. What is it about life that causes us to place things into those kinds of categories? The best is not really always the best and good things can actually be just “okay.” I know my life has gotten less complicated because of it and I like that.
Those who follow me online know that I have had challenges with hackers and malware making me redo my online presence and rebuild my website. That change has been the hardest because I feel like I have failed my followers out of everyone, but I’m thankful for their grace and forgiveness. Positive Living with MS is finally live and online even if it’s still a work in progress.
Someone asked me, how can you be positive in this mess happening in life today? Being a positive person who is living with multiple sclerosis sounds like an oxymoron. Is it even possible to do both at the same time? Some would say it can’t be done. They would say that MS is so full of uncertainties, pain and complications that there is no way to face it with a positive attitude. But it can be done and is being done by hundreds of people every day.
How is that possible? How can anyone keep a positive attitude while facing such hard times?
I think the word positive has been misunderstood and improperly defined for far too long…so much so that it has been an impossibility for many to attain a positive life in the midst of hardship.
Being positive has nothing to do with how many jokes you can tell, how funny you are, or laughing all the time. It’s not about living in an I Love Lucy episode or a Three Stooges world. It’s not about hiding from the reality of what you are going through by trying to cover up the struggle in an attempt to keep the world from knowing it exists. MS exists. Hard times are real. Tears happen. No amount of covering it up is going to make it go away or lessen its troubles. Let me tell you what it means to be positive and living with MS…or any chronic illness.
Being positive means that even though you are in the middle of the storm of all storms in life, you get out of bed to face a new day; even when the pain has you doubled over in tears, you keep going; even when your brain is foggy and your words are muddled, you give of yourself; even when your life has flipped upside-down and inside-out, you fight because you simply refuse to be defeated.
Everyone has struggles and hard times, but it’s your attitude that determines if you are living it positively or not. Do you go through your day constantly complaining? Or do you try to find a small ray of light in the trial…a smile in the struggle? You can do this!
It’s alright to have negative thoughts when your path bends the wrong way or the unexpected happens. Don’t beat yourself up when negative feelings, thoughts, or words creep into your life. You haven’t done anything wrong. That’s just a part of being human. It’s okay to cry, be afraid and get frustrated.
The challenge is to not let those negative things pull you down and hold you back from moving forward. Being a positive person it not about pretending things are great all the time. Being positive is about allowing yourself to be real, to feel, cry, struggle and fight, yet still hang on to hope in the process. Hope doesn’t just happen…it’s made. It’s made for the day that tries your understanding, when your blessings can’t be counted and the sky has changed to darkness. Hope is made when hope is all that is left. It’s made for you.
*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.