Over the last month, I have reconnected with people I haven’t seen in years (27 years for one)…. It should be a time for excitement as we reminisce about past adventures, unfortunately, it has been a struggle. I’ve shared my diagnosis and the most devastating part is not being able to remember….
When they ask “What’s it like living with MS?” Uhm…there’s just not a simple answer. To those who don’t see me every day, they don’t know the subtle changes taking place. They figure all must be well since I am still walking. I mean isn’t MS all about not being able to walk and constant pain? The truth is there is so much more to it….
When I try to describe the occasional physical and daily mental difficulties I experience because of MS, it is often met with some interesting responses. They have stemmed from “eat healthier”, to “eat more potassium” for the spasms in my legs, to try those pills on TV to help with memory, to “take B12” for the exhaustion. When I explain, I do some of those things already but they simply don’t work, They look at me like I have 12 heads! After all, it works for them so it should for me too.
Some people just don’t seem to understand that those of us living with MS aren’t like them. We have a damaged Central Nervous System and our immune system is in chaos causing our own body to attack us. Some of the damaged areas to our nerves have healed well over time but some haven’t and new damage appears all the time.
The exhaustion I experience isn’t always because I didn’t sleep well the night before or because we aren’t eating nutritionally. It’s a debilitating symptom which isn’t always remedied with natural herbs and better sleep. Those things can help, but it’s not a “fix”. Catch me between 1PM – 3PM and you might find me falling asleep mid-sentence.
The loss of memory is something i will have to live with FOREVER! Some things come back – you know those random things – but maybe only a snapshot instead of the whole movie. LOL. I’m learning to be honest about it and thankfully most people understand.
A trip to the mall is exhausting! Some days just making my way across the parking lot of the grocery store presents a challenge. When I am with my mom I always say, I wish I could walk as fast as she does at 82!
Through it all, I have learned to look this disease of MS square in the eyes and say, “I am not defeated because of you and regardless of what happens in life I am thankful for each new day I am given.” A friend said to me recently, “God has a plan for you through all of this, just remain faithful”. My recovery and working the steps has helped tremendously with this process. I am turning things over and waiting for God to tell me what to do!
We will never understand all the why’s in life. Why MS? Why now? Why me?
No matter what the storm is you are going through; face it and be determined to be thankful as you go through it. Yes, it is possible to be thankful even in the most horrible of circumstances, but it’s a choice; and you have it within you to make the choice. You can stand up (even if only on the inside) and say, “I refuse to be defeated by MS (or whatever storm you are experiencing).”
Strength isn’t measured by the amount of things I can do or by how big my muscles are, it’s determined by the attitude I have while going through the difficult times in life. You are doing it. You are making it. Square your shoulders back and hold your head up high today because you are STRONG even though your body is weak!
This is MS Awareness Month and his has been my mantra lately. I’ve had more days then I can count where the reality of MS has hit me. From struggling to walk with an ache in my legs, to brain fog which never seems to end to not be able to process thoughts, words or sentences. God has placed loving people in my life who help me through the struggles. It is his plan and even though some days I can’t see the light at the end of the tunnel…. I will hold onto my faith.
Have a ThirtyOne-derful day!