Sometime ago, I promised myself to keep moving forward with MS instead of letting it drag me into an abyss of loneliness, self-pity, anger, and depression. I reluctantly accepted the fact that it’s highly likely I will never walk again. Of course that comprises all the things that are included with the privilege of walking, such as driving and any semblance of independence.
Now I am having problems with my hands! I’ve mentioned that I need help completing common daily tasks, like combing my hair and using my computer mouse. I just do not have the physical strength anymore. I’m using dictation software now because of it. But it’s so much more than not being able to type or open a jar of peanut butter. Usually in the morning I’m okay, but as the day progresses my functionality diminishes.
My worse nightmare came true years ago when I was relegated to a wheelchair. And guess what? I adapted and survived it. A fellow blogger reminded me, “all the things that I’ve been afraid of, or worried about in the past, are water under the bridge now.” So much truth resonated in those words. The life I lead now was unimaginable to the former able-bodied Nicole. But I’m still here and I’m going to lean toward life.
It won’t be easy, but at least I’m not alone. My goal is to be satisfied with what I have and take delight in the way things are.
A very tall order for anybody.
it’s been a while. Nicole is since I’ve posted anything to you, at least as a reply to all of your wonderful and inspiring posts. You know you are loved by so many people. And you know I am one of them. And I am honored to know you. Take care of yourself and thank you for being such that such joy and such a representative for those of us with this godforsaken disease. Were all doing the best we can with what we have and you are our voice
love you, Renae
Renae, it’s so nice to hear from you. As long as you’re reading I’m happy!
It is reassuring to know that others are experiencing similar feelings and situations. Thank you for sharing your experience. I remember when I first had to use a cane, it was the end of the world. And then as I adjusted and accepted it, there came a relapse and for ease and safety sake I used a walker and even took it out of my house. Ok I adjusted and then this past February, relapsed and never fully recovered. Left leg, left hand 🙁 so now I use a chair and I’m extremely grateful for it, however, my worst fear has come true and I need to learn to accept this, but I’m still fighting it which ultimately causes frustration and depression. It’s funny how I wish I could go back to using a cane (how I fought my poor cane) now I love it
Christine, I’m in the boat right along side you!
I looked at collapsible canes at drug store, tried it out, but didn’t get it. Pride still in the way and hoping my legs get better.
Gateacher, I truly understand that and went through a similar phase. Then it got to a point where it really wasn’t up to me. I couldn’t walk safely on my own. I was scared crossing the street and knew I should get one.
I always stood by the saying I try to teach my son, “Happiness isn’t getting what you want. It’s wanting what you have.”
I used to believe this to be true, but over time, I’ve come to realize I’m never happy in a static situation. I will only be happy with what I have if what I have is a goal to work towards. At some point, life isn’t the stuff we get whether it’s earned or not. At some point life is all the things we did to get “it” or with it once we have “it.”
As I’ve read more and more by and about people with chronic illnesses, the ones who do best and seem happiest are the ones who have a goal or a passion for which they care. I’ve come to think life is whatever gets me the heck out of bed and occupies my mind/body.
Well lived, EXACTLY!
Thank you, Nicole.
Arletha, Your welcome.
Nicole~
I love reading your posts, I totally relate with you ~ I guess most of us with MS do! When I see my arms and hands weakening as I type I wonder what’s up for the future~ I know it’s all about keeping a positive attitude, every time I think of you, I remember the ‘laughter yoga’!
~Linda
Linda, That’s funny.. No pun intended!
Nicole, a tall order for anyone. But your attitude is inspiring and it is contagious. Thanks for sharing your blog posts. Julie (from Laughter yoga years ago)
Julie, I haven’t been in a minute. Thanks so much for reading! We’ve got to meet up some time. I would love that!!!!!!
You are a trooper, your attitude illustrates this fact. You are facing your situation with grace.
Lisa, You are trooper too. I know this because you keep coming back!
Nicole,
You are an inspiration!! May God continue to uplift you!!
Happy Miraculous Strength Day!
Marcia, Thanks and happy Strength day to you too!
Works in Progress. That is a hopeful term Always! Thanks for this.
Darcylu, that would have been a great title for this blog!
Beautiful, dear! Keep up the good fight!
Susan, will do!!!
Nicole,
Thanks for being so positive.
I have been trying to have a positive attitude but it ‘s not always easy.
Your writing is an inspiration to a lot of us
Thanks again
Lorraine, Thanks so much for reading. Unfortunately I’m not as positive as I would like. I’m a work in progress.
Please, everyone, consider getting tested for CCSVI–if you have it, try a treatment. I thought it was my CURE for MS–the best thing that ever happend to me. BUT for ME it did not last –I re-stenosed after a few weeks. I had Dr. Arata in Cosa Mesa, CA try to open my veins again, but my LEFT IJV is totally blocked OR maybe I don’t even have one–cannot be determined without surgery. BUT OTHER PEOPLE have been Helped–you may not hear about them because they are gone from the INternet and Not posting–they are busy doing Normal things again–getting on with their lives…
ALSO, please look at HSCT for the Newly diagnosed MSers and/or those MSers BEFORE they reach an EDSS of 6.0–no one told be about this–6.0 EDSS is where you need an assistivae device for ambulation.(I am about 6.5)..this is the point where you are No Longer accepted for clinical trials. H.S.C.T. has previously only been done for cancer patients and is now being tried on those with auto-immune diseases. There is a clinical trial accepting MSers in Seattle and at Northwestern in Chicago. I was not accepted but everyone should try for this treatment to be rid of MS. It takes your immune system down to Zero, then builds it back up again WITHOUT MS. Talk with me at [email protected] or go to the HSCT Forum on Facebook. It takes about 3 months from one of the hospt. overseas, but it is SO Full of HOPE–!!
Yes you hit it right on the mark. I am gradually realizing that my PPMS is starting down that slope where assistive devices, with wheels and motors, will be necessarry to maintain some form of freedom. I was diagnosed back in 1985 and I have been blessed with a very slow progression up to recently. I am really getting weaker in both my arms and legs, which of course gets worse as the day goes on. I have had a painful MS Hug since my symptoms started and that gets worse also. I am back to taking narcotics on a daily bases in order to keep going. It isn’t all good, but it’s not all bad either. I am old enough to not be worried about what people think when they see me being different on a day to day basis, and a motorized wheelchair will allow me some of the freedom for life that is slowly slipping away. I don’t fret much about where the old me was, or would be. Life goes on….Take care
Bryan, well said!
These are some really wise words! This is all any of us can hope to do – thank you.
Laine, thanks! it’s nice to see you here still!
Well done Nicole. Your positivity is excellent and will inspire many other sufferers x
Rachel, thanks and I hope so!
Yes, a tall order indeed. We MS’rs certainly have said in the past “that won’t be me”, but look at us now. That is my biggest disappointment with most MS sites…they don’t paint a REALISTIC picture of what might be. Am I still the person I was? For the most part, yes. There are some noticable changes, but I’m still ME!
Kim,
Kim, yes that’s what I tell my self constantly
You speak for many of us. Your voice rings through the murky darkness of lost physical capacity, reminding there is still an individual worth listening to.
Judy, Thanks for coming back again and again and…
As always Nicole you are on point, because it is the “worst nightmare”. I help manage a support group and in one of our most recent meetings a member spoke to this fact. Crying as she spoke, telling us of her fear of not being able to walk. Another member, who has been using a wheelchair for some years now, told her something very similar to what you have detailed in your blog. His life is no less important now that he is unable to walk, in fact it has been enriched by doing the very things he may have done before using the chair. It is wonderful to hear that we are NOT defined by our ability to walk… Nicole, you go all over the place, you really get out.. put yourself out there and I love your pictures showing exactly that! Inspires those of us who do walk to get up and go somewhere!
Ellajean,
Thanks so much.
There’s a great story about Itzhak Perlman playing a concert with three strings on his violin. He had polio and walked with crutches. A string snapped and the audience thought the concert was over. The urban legend goes that he said it’s up to the artist to make music with what is left. Good metaphor for what ails us, anyway.
Mimi, Well said. I’ll have to remember that one.
With u Nicole.
Acceptance what a dance we r dancing to.
Sometimes do not care for the song but breath anyway.
Angela, yes breathe anyway!
yup Nicole, do understand you. I am having so many cognitive problems with MS, cannot work in my profession which I love, but I need to keep satisfied and take delight with the way things are. Stole that, as you said it so well.
Monica
You rock, Nicole. Your positive spirit is inspirational, and I applaud you with a standing ovation. G-d bless you, my friend.
Cathy, Thank you!
Hello Nicole
I’m alwayz inspired by your blogs. I was diagnosed in October of 2011 4 days before I turned 25 and I still haven’t coped with the fact that I am sick! I don’t want to be this way! I haven’t driven a car in 3 yrs and I have a cane and walker already and a electric wheelchair. Are their any words of advice you can give me?
Nicole, I’m humbled. Advice? You are already doing a lot of it already. Contact me at [email protected]