“If we believe we need to create massive change in order to experience joy, we will inevitably feel a sense of restlessness.”- Lori Deschene
I have physical therapy once a week. There is always a variety of patients represented at different stages of their disease processes. Including those worse off than me. Today I found myself slightly down. Which is unusual because going to physical therapy is the highlight of my week. But as my therapist was assessing me for the new device I mentioned in a previous post, I got a chance to see my progress or lack there of in treatment. I felt a bit defeated because simple walking seemed like a distant dream. Just out of reach yet so far away. It occurred to me in that instant that I’m never gonna be like I was. I’m never gonna walk, I thought to myself.
Immediately I was filled with shame. Because right there, in my midst, were women and men that would love to trade places with me. I’m not paralyzed. My vision is functional. I have full use of both my arms and hands. I have a dynamite support system. This should be enough. I guess sometimes its not. I selfishly want more.
We always want what we don’t have. Never stopping to appreciate our blessings. I’m suppose to hear from my insurance company about that new technology (the Bioness) soon. Maybe too I’m just nervous it won’t live up to my dreams or my insurance company won’t cover it.
MS is suffocating me. I in turn lash out at those around me. I’m noticing that when I get tired my good leg starts dragging too! When will this whirlwind stop? But what I need to appreciate is that even if I could walk that probably won’t be the answer to all my needs. There’s no quick fix for me.
But boy do I hope this new device will at least patch me up!
You put words to my feelings. It’s all about personal growth and attainment, don’t you think? Mourning then mourning again leading up to life in the NOW.
Linda, Yes I wholeheartedly agree!
Isn’t great that we don’t have to defend how we feel, I mean our feelings belong to us and nobody has the right to tell me how to feel. Which is particulary good for us with MS because some days just suck and usually there’s nothing we can do about those days. However, I’ve found it helpful to not compare myself and or my health to others, especially normal healthy people, yet I can still relate to everyone regardless of health in order to maintain a positive perspective on life. This may not make sense to anyone but it helps me lest I climb on to the pity pot on days like today when it hurt just to get out of bed and even more when I began to walk. And to make matters worse I’m house sitting for a son and have to sleep on the second floor which was not designed for somebody with MS and neurapathy. Yet I must admit my gratitude to be able to visit my chiropractor on Mondays and boy was there some crunching/cracking noises this morning. Sorry for rambling and I really appreciate your openness when discussing your experiences with MS. And please give your aunt Gail a hug for me, sounds like she’s got some wisdom!
Tim, Thanks for stopping by and yes I will give A. Gail a hug!
We need to have a safe place to share whatever we feel & thank you Nicole for giving us one! Someplace where we are reassured we’re not alone cuz we find others who so relate. And those who are in a better space at the moment can share their light/wisdom (thx Robert!) . It isn’t always easy, but we’re still supposed to try – even when we fall, We Were Born To Fly (Paul Williams).
Leslie, I can’t tell how much it always means to see you name come across my screen! Yes Robert is a gem!
I know there are people worse off than us but sometimes can’t take my eyes off those that have uninterupted mobility. Must admit I did take walking for granted, wonder if we will again maybe this is just a temporary classroom, for us to learn this particular lesson? Sometimes realy want to change schools!
good luck with the bionic impulse
Angela, I like looking at it that way!
I don’t think there’s a way through that particular nest of nettles. “My X doesn’t work, but my Y does. Look, that person’s X and Y aren’t working! Why don’t I feel grateful at my good fortune?” Well, quite simply, because your X doesn’t work. I mean, c’mon, I’ve got a bladder that doesn’t like to hold things in properly, a friend of mine has a bladder that won’t let anything out, and he has to catheterize himself, several times a day, by the clock. And that makes me feel… good, about having a not-as-bad time of it? Even while I’m having a bad time of it? I don’t think so.
But as the computer in War Games said, “The only winning move is not to play.” Let’s face it… your X doesn’t work? That sucks. Be honest about it, don’t dodge it—it sucks. And that hurts. But when you’re in that “honest” place, and you see that other things do work, you can enjoy what you have without cluttering it with recriminations about how you process your misfortunes.
That’s the hard part: processing your unhappiness, rather than wallowing in it. If you’re wallowing, you’re stuck, but if you’re processing it, you’re moving forward. And the way out is through.
As the Japanese say, instead of wishing “good luck”: Persevere!
Robert, at the risk of sounding a bit crazy, I just adore you! Thanks!
My sweet niece ! We’ll never realize just how blessed we all are in the name of JESUS! As u know, all of our lives experience different seasons at different times, and in different places in our lives. I could call it a test that we take or as some would call it A TESTIMONY ! Just remember one thing when u get in these moods ” THOSE BATTLES HAVE BEEN ALREADY WON and we are just in my opinion just riding the waves. Hang in there I love and I’m so proud of you!
Well don’t mind me I’m just over here riding this monstrous wave!
Ok, I’ve been looking up some buddha quotes and it has helped me out of my funk. I can’t remember them, ( i cant remember crap )but you inspired me to look in this direction. Here’s a hug and some beautiful light to shine on a brighter tomorrow! Olivia
Olivia, good for you! And I’m glad I was able to lead you out!
My friend Elisa has ms also, always tells me “things can be worse”, all the time. And she is right, but it still is hard to take. I suppose it’s part of morning a loss. Even when we lose a family member to death, we still morn, still miss what used to be, it’s part of being human. I hear ya, I really do!
Thanks for the read and understanding. You must be a great friend to Elisa!
wASN’T IT THE rOBERTA fLACK SONG (I’M AGING MYSELF) “KILLING ME SOFTLY”…THAT’S WHAT MS DOES TO US. YES I GET IN A FUNK ALSO….I AM TERRIBLY JEALOUS OF ALL THOSE OUT & ABOUT DOING “STUFF”. I ESP DISLIKE WHEN PEOPLE COMPLAIN ABT MINOR ACHS & PAINS! WHAT I WOULD GIVE TO BE ABLE TO JUST STAND! HOPEFULLY YPU WILL GET YOUR DEVICE…KEEP UP WITH THE PT….I WISH I HAD.
THANKS FOR READING. PLAN TO KEEP UP WITH PT AS LONG AS I CAN!
I really feel for you Nicole. Sometimes we just feel defeated and sad. I am sure this is normal considering what we face everyday. It sucks that our lives had to change for the worse. I have been in a funk for weeks and can’t pull out of it. It just happens sometimes.
I was at a festival yesterday and found myself being jealous of all the people who are healthy. I have never felt this way before. They experience a freedom you don’t realize you have till its gone.
Lisa, I know. I know, but thanks for reading.
Hi Nicole, How lucky you are to get PT once a week. My insurance won’t pay for ongoing PT. But I know just how you feel about wanting what you lost. And sure you probably wouldn’t trade your MS for a different incurable disease, but that’s really not going to make you feel any better.
What helps me is if I can accomplish four simple things a week, I can feel better about life:
1. Cook 1 thing that requires more than heating it in the microwave
2. Get the dishes done everyday
3. Read 1 book a week
4. Clear clutter
If I can do that, I feel like I’ve had a good week. It takes everything we’ve got just to maintain our physical body. If I can move beyond that at all, I feel like I’ve done something to help myself.
Hang in there, Nicole. I really enjoy your blog.
Roberta, Thanks for those tips they really sound realistic for me too.
Thanks for reading my blog. I find it’s one thing I can do too!
Nicole, I think it’s perfectly ‘normal’ that we get down occasionally. It’s difficult to see all that we still have, while we’re mourning all that’s been lost to us.
Good luck with the insurance and the Bioness!
Muff, You’re right the simplest thing can sometimes cause me to lose focus.
i get mad when i watch others who do things without a care…simple things like standing up from a chair and walking to the door…. skipping, going for a jog, riding a bicycle, and on and on…
i get jealous. and i wonder if they are grateful for the ability to do those things. most likely not. i know i wasn’t… all those things were taken for granted.
Sherri, I knew I had MS, but never thought it would get this bad, so I guess I use to take some things for granted then and now probably still do on some level.
I can relate to this post. I have long said one I get more from my kids than I can ever get back. As my wife and I adopted 2 medically fragile kids and foster others, I see kids day in and day out who know nothing of what it would be like to be born completely “healthy.” It puts a stopper in my complaint valve. When I was first flaring, I was taking care of my daughter one weekend while my wife took a weekend get away. I woke up with what is now a customary head-ache, but what’s worse was everything was blurry. How was I to draw her medications?
In any event, as I carried her down the stairs, one of her arms flopped in front of my face blocking one eye. It was an “A HA!” moment as I realized I could just close one eye. From that point on, I have felt silly complaining as I know my daughter has gone through so much more (4 heart surgeries, a stroke, and a handful of other serious illnesses). We will all muddle through together. To whom am I going to complain? Her? My wife taking her of our kids? My son with his own issues?
No, some times we just have to take a second to realize how good we have it. In another country with a different medical system or without our loving families, our life would be much harder. It may not seem like it, but we are the lucky.
Life well lived, now I feel silly. Thanks for that.
Stay strong Nicole! I’m praying for you getting that new device and it will help you to walk again! Stay positive! You are an inspiration to so many!
Wendy, Thanks so much!
My sentiments exactly! Great read!
My sentiments exactly! Great read!
Oh Nicole, we SO understand the “want” for more or better! Prayerfully, this new device will be all you hope for (and more) and open up your beautiful spirit to higher expectations and really get that ball rolling. I guess that’s what’s keeping me going, striving for that remyelination or stem cell treatment to hasten and BE an answer to getting back to “life” and the living of it. There’s got to be some help out there for us (and so many other diseases) and it’s got to come soon, not just be someone else’s paycheck or research project, bogged down in a government office somewhere (pharmaceutical company just wanting to make some BIG money off of our plight)!!
Janet, I wish this wasn’t a money making industry!
Yes, it simply saddens me to see people trying to make money or promote themselves in the names and suffering of others. Now the folks who truly have their hearts and minds into it, no amount of adoration and thanks is enough….but wait, they’re the ones who don’t want it, they just want to make life more livable for all! 🙂
I know you said you felt a bit defeated but I noticed you never stop trying. Your determination keeps you working towards your hope and dreams. I wish you all the best with the device and the insurance company.
Take good care!
Arletha, Thanks for the encouragement!
I too have ms,and find it hard to walk. But with writing its like physio, also I myself write my feelings down and that on its own does somehow make me feel better.
I know that ms is cruel and I struggle everyday in some way.
I too have good support and even that does,nt feel like enough at times,But we are still looking at the grass from the top. Chin up 🙂
Andrew, I never how much of a help writing would be. Thanks for that.
I was going through something a few weeks ago, and was complaining although I’m doing better than you physically. I felt bad but needed to vent terribly. I’m still in my funk a bit but I’m not going to worry about it. In my post I apologized for being selfish or something along those lines; you my dear, assured me that I was not being selfish and I somehow believed you. I can be very hard on myself. Now it’s my term to assure you, yes we could always be worse but I think you are far from selfish. I am learning how to share what’s going on with me and ask for help, because I’m realizing that it may help someone. The same way you help me when I read your blogs. I’m not big on self pity but you have taught me it’s okay to be concerned sometimes. With that said, don’t be hard on yourself because you think you’re being selfish. You are an inspiration actually simply because you are willing to share. Keep up the great work and good luck with the insurance company and the new technology!
Angela, I needed that! Thanks.