Some mornings I wake up and I just can’t do it. I don’t want to battle MS anymore. But somehow I muster up the strength to fight the good fight and begin my day.
I have tremors in my hands, which makes using them exceedingly difficult. At times I’m unable to hold a fork or spoon and transferring myself in and out of my power chair is becoming more challenging due to my lack of strength and mobility in my arms and legs. Most nights I feel like someone borrowed my legs and ran a marathon.
Lately my body aches wake me up before the rest of me wants to be awake. Then I spend the rest of the day exhausted and wanting to just climb back into bed.
I can remember when I was so active. I did so many things. What happened to me? Why has MS consumed so much of my life?
It is so frustrating to have such a hard time even taking a few steps without using a walker or the wall. I feel like a wax dummy fighting a fire that is MS.
The other day after taking a nap I woke up and steadied myself to go to the restroom but my legs didn’t follow. I quickly fell straight to the floor. I gathered myself and began to crawl to my wheelchair. It took me about five minutes to situate myself in my chair and make it to the restroom. But I did it and I was so happy.
Believe it or not, nowadays I consider that a victory because no one saw me crawling on the floor and I was able to hold my business until I made it to the restroom.
I guess when life hands you hard times any positive moment, no matter how small, is welcomed. Even the small victories can be huge.
Please ALWAYS REMEMBER:
I LOVE U! I don’t say it enough to you. I love you ! I love you!
Today I had what I’d call a BIG VICTORY! I MADE MYSELF take my medicine. Thanks for reminding us of how BIG our small victories are.
Aunt, I Love you too!
how long have you had MS?
13years
thank you nicole for boosting my frame of mind i try not to dwell on the bad days but sometimes it is difficult
Brian, I too dwell at times, but it never seems to help!
Needed this today, battling very painful spasms in my right shoulder and arm for about 2 weeks now. Just thankful for the good days, I am still somewhat mobile, just have to get up when I fall and using a cane most of the time,still working, even though sleep evades me quite a lot! 2-3 hrs at a time is all I can manage most nights, sleep 2, up for an hour then try to get a couple more! I guess whatever works as we battle this disease! Anytime I can get the legs moving enough to get to the bathroom during the night is a GOOD night!!! Thanks for helping us celebrate the small victories!
Darlis, So true! Thanks for reading.
Oh, you and I are definitely traveling the same highway. In earlier days, I would have said “walking,” but for folks like us, the locomotive metaphors have a very different meaning.
Daily living is filled by “Oh, I guess that’s what I’m doing today” because what I can do “today” changes constantly. Daily. Hourly.
My thing isn’t “fighting” the MS, because MS as an entity doesn’t exist… what’s there to fight with? But instead, I try to find the funny. Hit the ground, can’t get up, and then… laugh. Eventually get up, with any luck, but even that’s gonna have something funny about it. And really, I’ve fallen and I can’t get up… what else is there to do, but laugh?
And find a new way to get up. Being an out-of-the-box thinker has gotten me into a lot of trouble in the workaday world, but coming up with new ways to circumvent the “challenges” that living with MS surprises you with daily? Hourly? “Think different,” as Steve Jobs used to say! Which is easier after a good laugh, much easier after a good laugh.
Robert, That seems like the case.
You are great company!
I am so sorry you are experiencing so many difficulties. Take pride in all your victories, they are hard earned. I hope you are coping. I worry about that. Change can be so disheartening. I send good thoughts your way.
Lisa, I’ll be okay.
Hi Nicole please know how much of an inspiration you are !!!!!!!! I am suppose to be starting my third trial of MS meds it gets very frustrating. Reading your post helps me greatly! Hang in there thank you for being the voice of MS so glad you were able to make the trip. You looked happy and beautiful!
Pam,
Thanks, that means allot .
i completely understand and can fully identify! you GO girl!!
Michelle, It helps to be understood.
Nicole, I’m so sorry this happened, but you got up and made it. Thank God for small victories. You are so strong. I admire you. I feel so depressed most of the time and I’m not in a wheel chair. My dr recently put me on Cymbalta and said it would help with
the pain from muscle spasms as well as depression. It has helped a lot, but it felt worse
before it got better. I didn’t want to leave the house, it’s hard but now I can. The muscle spasms in my legs are much better. Maybe your dr could try that for the pain.
Take Care, Therese
Therese, I thankfully don’t get painful spasms. I do however muscle relaxants and anti depressants. I have my very own drug store over here!
Nicole – I’ve been there! It amazes me that it’s only been a little over two years for me and my MS, but it sure got thrown in my face. I told my husband recently the scariest thing is that I’m not scared to fall anymore. I just know it is part of my life now. We always celebrate the little victories. I used to sleep through the night with no problem, now I get up to use the restroom in the middle of the night. Occasionally, I sleep through the night still (like 3 nights in the last several months) and that is definitely worth celebrating. I love those nights! I fell a little over a week ago and sprained my ankle 🙁 I went from using my cane full time to using my wheelchair again since putting pressure on my ankle would make me fall. Today, I found out that it is okay to use my ankle again and I am so excited to use my walker again! It is so true that celebrating those little victories in life is huge now. I am not completely sure I could continue to fight if I didn’t celebrate those victories. By the way – I am completely impressed that you were able to make it to the resroom on time! I am sure I would have had an accident. I always joke with my husband about him cleanig up after me. I know he didn’t expecto to – at least not until I was much older than I am. Life is funny though and you are so right it is about the small victories!
Laurie, Sounds like you have experienced a few small victories of your own!
Nicole,
I am sorry that your ms has progressed this much but I hope you know how much your willingness to share your struggles publicly and honestly is appreciated by me and other readers. I’d say that is a big victory to celebrate!! Take care, Amy
Amy, that means a lot. thanks for reading.
Hang in there Nicole, you’re my she-ro! I love your spirit despite all the obstacles you have to face in your everyday life! : )
Renecia, thanks for the support. it’s why I keep writing!
Hey Nicole,
Amen girl, MS brings new meaning to the phrase ” it doesn’t matter how many times we fall, what matters is that we get back up and try again”! You inspire great courage and hope in our daily battle, keep the faith while fighting the good fight!
Tim
Tim, lets both fight on!
Nicole,
Thank you for reminding me that I need to celebrate my small victories. I have been diagnosed 8 years and I am dealing with spacticity. I am experiencing outrageous amounts of pain 24 hours a day. Sometimes I wonder how much longer I can live like this. But this morning I got out of bed, I showered, and I faced the day. I’m going to celebrate that victory.
Jenny
Jenny, sorry for your pain. I can’t even imagine it, to be honest. but I celebrate with you!
((((Nicole)))
Judy, right back at you!
Well, Nicole that could be me you just described except I am worse. You fell & you were able to crawl & get yourself up; I can’t do that on my own. I fell twice last month, one time with my scooter on me (luckily my husband was there!) & he got me up; the 1st time I had to wait for him (an hour) to get home. Yes, a small victory is awesome; it’s what we live for!
Kim, it’s what we live for in this game of wills.
Celebrate the “small stuff”. There is nothing wrong with that. I am so sorry that your MS has progressed so much. I rejoice in the knowledge that you refuse to give up. There are too many that would choose not to be as strong of a fighter as you and I commend you for making the effort to keep on chipping away at life. I remember the following poem from my teen days….way before MS. It speaks truth. Take care of yourself and “Don’t Quit”.
http://fearless-selling.ca/wp-content/uploads/2012/06/Dont-Quit-Poem.jpg
Suzanne, thanks for the poem. it rings true for me too. thanks for your time. I believe that it’s how I handle the progression that shows through. thanks for reading.
thanks Nicole recovering from my post shower “cant get myself dressed” melt down.
It is so frustrating, but i do give you a big high five for getting from the ground up into the chair good job!!
liza, I guess I just met to met your high five!