“In three words I can sum up everything I’ve learned about life: it goes on.” – Robert Frost
My body seems to find a new disaster every week, so why should this instance be any different. I just know it’s going to be one of those days.
I’m weak. I’m tired. I’m frustrated.
It’s like the odds are stacked against me. My life is starting to feel like a game and I keep getting sent back to start.
The world can move very quickly. Because of that tempo, I find myself being absent-minded for more times than I would like to admit. I see everyone moving at the speed of light, while I’m slowing down. I get lost during basic conversations. My memory has begun to leave me. I’m not able to construct whole ideas. My thoughts are choppy images and concepts that I try to piece together. My reasoning is impracticable as I struggle to think of the words to use in simple everyday situations. I am constantly apologizing and asking people to please forgive me for my lack of attention to detail.
I’ve become detached from everything because my mind is focused on more pressing efforts. Like trying not to fall as I attempt to go into the next room or remembering why I was even going into that room.
Between texting, phone calls and the Internet, everyone I know is always “plugged in”. They are constantly moving. I’m starting to realize, I have to live at my own speed. I can’t keep up with everyone else nor should I have too.
Once I learn to give up what I want, for how it is, I will be in a much more satisfying position. Then I’ll be able to experience the sweetness, not just the bitterness of life. And that can only happen when I start living at my own pace.
I feel your pain, sister! I am sick and tired of being sick and tired! You don’t need to give up what you want, nor should you. You just need to come at it from a different angle. You know, think outside the box. And yes, I know full well, that sometimes it’s hard to think AT ALL, much less outside the box. If you give up what you want, how can you possibly have a satisfying life? You (and all of us with this stupid disease!) can’t let it take more from you (us) than it already has.
I completely understand how you feel. I do not physical look like sick to others. People do not understand but as you have said, if it is not one thing it is another!!!
You stay positive and thanks for sharing your experience.
I recently published my article on newly researched rainforest medicinal plants and their potential for reversing the progression of ALS, Alzheimer’s, Multiple Sclerosis and other neurodegenerative diseases. It can be found at:
It is the culmination of several years work, having studied ethnobotanical medicine and the field of neurodisease, making connections between the two in the search for something viable in terms of alternative treatment options. Hopefully, you will find reading it worthwhile. It is currently being discussed on several online forums related to the subject matter.
Regards,
Daniel Gustafsson, Sweden
I do not think that you have to “give up what you want” to have a more satisfying life. You just need to go about getting what you want at a somewhat slower pace…
Thank you for your words. What you are writing makes me feel sad but at the same time warm in my heart. Lots of hugs and warm thoughts I send you over the Atlantic ocean.
Perfectly said girlfriend. I love our phone conversations both of us repeating what we saod the day before forgetting that we already talked about that but at least it feels like a new conversation. Got nothin but love for ya
Antoinette, Who would’ve thought at this point in my life I’d find a new friend thanks for being that person.
Nicole,
Thank you for writing so honestly about how challenging life with MS can be. If you don’t mind, I would like to recommend you read a book that has been very helpful to me along this journey — Loving What Is by Byron Katie. A wonderful and very thoughtful and spiritual book about many of the things you have written about today. This book has helped me let go of my preferences (how I wish it was) and embrace what is actually happening (the “good” and the “less good”) with a very different mindset. Not positive thinking per se – but a deepening of my actual daily experience. Since reading it, my family has commented on how different I am to be around, and to be honest, I find myself complaining less, loving more, and valuing the life that I am blessed to have – even from my wheelchair….A great read!
Linda, thanks for the read. I’m going to my library as soon as possible to see if it’s available. I’m still waiting on that phone call though!
Linda, I’m on the way to the library now. They have put it on hold for me!
One word you used hit home with me — frustrating! I feel it on a daily basis as I try to find my own ‘new normals.’ Moving at a s-l-o-w-e-r pace became necessary, but I want to scream in frustration. Not being able to accomplish simple things frustrates me. Needing so much help from others adds additional frustration. I think I have a new “f” word! Thanks for letting me know I’m not alone with this sentiment!
Thank you Nicole for summing it up so well.I am still after 33 years of this disease, trying to get use to my new normal. It has been ever changing. I too struggle to get to the next room, and after suffering a broken hip and pelvis from falling am very nervous when I walkI am so glad I found this site..
Gail , I’m glad you found me too!
Hi Nicole, your words are inspiring. Living at your own pace, that is true for all of us no matter the obstacles, illnesses etc. that we may face. For me, I’m still trying to accept the hand that was dealt. Don’t really like it, trying to make the best of it. Thank you for sharing.