This too shall pass. I know and believe this always. Still I must cautiously scream it because recently, I’ve been feeling pretty stable in this normal of mine. As a matter of fact it resembles the old me I know and love. Now I haven’t gotten any miracle drugs or anything I’m just taking my regular meds including my newest prescription of Amprya. Oh and at physical therapy they’ve started putting me on this Functional Electrical Stimulation (FES) device. It basically delivers impulses directly to the muscles bypassing my weary nerves. This assists my legs allowing me to do things I can’t do on my own. My heart accelerates and I even get a bit winded as if I’m exercising. Initially, I was using it while riding the associated bike, they later figured out a way to use it while I stood and held on to something sturdy. I would lift my leg as far as I could and the pulses to my muscles would do the rest. Does that make sense? Well, afterwards I can do movement I couldn’t before albeit slow and deliberately.
Not to belabor the point, but it works similar to the Bioness. You remember the device my insurance company won’t cover.
Lately I’m using my walker more inside the house. No more crawling. Maybe all these things are coming together to keep me in good spirits. And that’s really the endpoint for me. I may look handicapped but I don’t have to act like it. Like I’ve said time and time again, if I let M.S. take my spirit then I’m losing the battle.
Thank goodness I’m not. Losing… that is. I think I’ll just keep riding this wave.
Folks, this is what works for me. My greatest goal is help you find what works for you.
I’ll leave with a quote I just stumbled upon and thought it would was befitting for this post.
“You have a choice. You can live in the No of your life or you can live in the Yes. Look at what is flowing, working, moving. Being in that energy will beget more positive experiences.” – Unknown.
[…] several years into this new normal, I’m still riding the wave I mentioned last week. It’s unfortunate that I can’t live like the able-bodied. But the […]
Love your attitude and outlook, Nicole! I often tell Jennifer that my spirit is one thing MS can’t touch. Stay strong and keep riding the wave 🙂 One of the many Springsteen lines that help push me forward, “Badlands, you gotta live it every day, let the broken heart stand as the price you gotta pay; keep pushin’ til it’s understood and these badlands start treating us good.”
Dan, Thanks for reading! Who knew Springteen and I thought alike?
Hi, Nicole. Thanks again for your inspiring words. They help me to remember to put things in perspective and be grateful for all the blessings that counter the trials and challenges of living with MS. Bless you and thank you for all you do.
P
Priscilla, Thanks!
hi Nicole,
your post, as usual has made me feel a lot better. I feel uplifted and, like to you and doing my damnedest to keep moving on at the reach and touch as many people as I can. You always motivate me to get back on my blog and write something even if I don’t feel like, even if I’m feeling dreary and uncomfortable in my own skin. Keep it up kiddo! You’re such a beautiful human being. Hope to hear from you soon.
Love
Renae
Renae,Thanks. By the way I’m reading your book Potty Mouth right now. Did you get my email?
I truly love and admire your fortitude. Your choice to move forward in the YES shows in your beautiful smile.
Thanks! I’ll probably see you this weekend.
GO Lou Lou GO!!!! Remember that??? Good to hear you so uplifted and the feedback you get here is awesome!!! This is such a cool community of readers!!!
I always liked the quote “A journey of a thousand miles begins with a single step.”
Every step you take in a walker is a step towards walking more and riding less, a step toward mobility. I’m happy to see you are pushing the boundaries. Keep going.
Life, Thanks man.
Hey Nicole, thanks again for sharing your everyday experiences with MS along with all the ups & downs. I think Montel Williams was the first person that I recall saying something to the effect of, we have to take charge of managing our disease and our lives, so that the disease doesn’t take over and rule and or dictate how we live our lives.
Thankfully I’ve been able to maintain that mindset during my first 6 years with MS and the concept is much like that of the quote you shared with us. The cool thing about your articles and the resulting posts is that some aspect of living daily with MS that I have yet to experience is mentioned and or discussed which causes me to read every word!
When the experiences of those that share the common problems of MS are discussed it provide hope and encouragement to me, and others I surmise from the responses I’ve read. So I want to thank you once again for your writing, remaining freely vulnerable and honest as you discuss your daily life. I think that what you are doing makes a difference in peoples lives and encourage you continue to fight the good fight!
Tim
Tim, It’s comments like yours that help keep me going.
Love your positive attitude…I have found that positive thinking gets me through a lot of trying times! 🙂
Jariann, Thanks for reading. Yes I do try to have a positive attitude the majority of the time! Meaning I do have my days!
Glad to hear PT is working for you. I love your quote, because it seems I have a lot more No than Yes in my life lately. I’m going to post it where I can see it, to remind me to focus on what I CAN do. Now off I head to the pool for a swim. Now, that’s one thing I CAN do. Yes!
Laurie, Yayy Laurie, good for you!
Hi Nicole,Glad your attitude is what it is.My attitude SUCKS.I’ve had MS for 28 years.I have lost everything in the last seven years.I am alone.I am in the process of fighting the state(I have been for 21/2 years)for the Bioness L300.I worked with PT for around 4 months.I keep getting turned down.Next court date will be superior court.I am not really doing this for myself alone.I’m fighting this fight for all who come after me.Ths state I live in feels it’s not medically necessary for a person to stand.They have bought me a beautiful power chair.I will not use it.Why?? Because I want to walk.I will not except anything less.I’m glad I still have the power of choice.Take care of yourselt.
Susan, Wow you are going through so much! I can’t believe you are fighting the state! That takes a lot of mental fortitude. I wish you the best for all of us!
Just wanted to say I have MS since I was DX @32, I am currently 42 will be 43 this year. I am no longer on the injections each one of them gave me side affects and made me feel worse than I was. I have a wheelchair I have, but I don’t use, I keep it charged and ready if I ever need it. But it is a reminder for me to keep going strong. I walk with a cane. sometimes I don’t need it. But as summer is upon us and I live in California it is HOT. I been off my injections now 6 almost 7 years and I been feeling great. I still take my muscle relaxers and depression pills and vitamins (lots of them) and for me it works. Not saying one should do this because we are all different. I do have athropy in my brain from my last MRI (water is shrinking my brain) making me forget. But I got in the habit of keeping a journal and write. I am a writer currently for the last 20+ years and I will be graduating from On-line College for WebDesign. From University of Phoenix. At my pace at my time, worked out great for me. I have goals still to do. But getting a degree was top of the list, next is to have my books published. To everyone with MS. Never give in to the illness or it will rob you of your life how you want to live it. Don’t let it live you.
Ana, So good for you! I don’t know you, but that isn’t stopping me from being proud of ya!
Good for you, Nicole! When I did PT, they used a similar device on me, and it really helped. One time, back in my working days, I wanted to wear high heels for an event. The therapist hooked up the stimulator, put on my heels, and Wow — I made it. The effect only lasted a day or two, but boy was it worth it! Keep up the great work!
Peace,
Muff
Muff, That’s neat. Why don’t you go anymore? Insurance reached it’s limit?
I’m so glad to hear you are having a better-than-normal day- and I know you know what I mean by that! Hugs- but only the good kind- to you.
Lisa, That’s cute. Thanks!
Hi Nicole, I have MS and can walk with a stick on a good day (but not very far), a walker with wheels on an average day and need the wheelchair on a bad day. I too am going to have FES and cannot wait for it (my left foot has footdrop). I hope it helps me walk again!
Sharon, Good for you! I’m excited for ya.
Glad to see you in good spirit. Keep it up. I am considering Amprya to begin in August. Have hope for improvement. I have always tried to put the best face on this monster. Not always sucessful..but tommorow us usually better. Great to see you feel OK about where you are today. Hope tommorrow is even better.
Helen, Thank you for the kind words. I just wanted to be honest and share that it’s not always bad.
Hi Nicole,
Good for you! I am glad to see that you found what works for you. The FES device sounds very interesting and it seems helpful to keep you moving. It’s important for us to find all avenues to keep our spirits high.
Take good care!
Arletha, Thanks!
This post just made me smile.
Kisha, That in itself makes me happy. Check out my FB page and you’ll be tripping
More.
Thank you, Nicole..
PT has definitely helped me too. I have been at it faithfully for 15 months. It is a sloooooow process, but I am getting stronger. My Neuro even noticed it at my last checkup!
I have swallowed my stubborn pride and let the assistive devices out there help me. I have a cane, a walker, and I bought a scooter a couple of weeks ago.
I can still walk, but not a long ways, and not far.
I so missed taking my dogs for a walk, so the scooter is letting me do that!
It is uplifting for my emotional well being.
I hate MS and all that I have lost, but I know there is so much good in my life, and I have such supportive people around me, that I am grateful.
As sucky as MS is, I would much rather have this than a lot of other things.
Faye, Thanks for sharing that. I agree movement Is good for us. As a matter of fact I’m actually sore. I love it!