I consistently try to acknowledge that many people may consider me a best-case scenario for living with a chronic illness. Let me also openly say that my family and friends are of utmost support. It’s the never ending dependency on them that’s wearing me down. I want to go about life on my own terms. I want to go where I want, when I want and with whom I want. No questions asked. I realize that sounds like something my younger self would say, but that’s exactly what I sometimes feel multiple sclerosis has dragged me back to. The truth is that Nicole died thirteen years ago when MS entered my life.
I’m embarrassed to truly admit that I’ve only recently acknowledged to myself that I will never be who I use to be.
The dying optimist in me always thought that if I got on the right medicine, did the right physical therapy or perhaps the right diet that I’d somehow see a resemblance of my former self.
Yeah right!
I’ve been consumed with trying to dodge these nasty, hurtful bullets of MS. I’ve been hit a couple of brutal times leaving some long lasting scars behind. Scars I’m learning to live with. My dad’s doctor said in regards to my fighting multiple sclerosis, “It’s like grasping for straws”. Intellectually I understand this, as I am well aware there’s no cure, but what’s my alternative? I’m still here and insist on maintaining the highest quality of life possible for my family and me. But at some point I have to realize that chances are I will not dramatically improve physically. That’s a scary thought, though it’s not the case for everyone. The worse some will see is a limp or maybe not even that. Moreover, this disease has been proven to hit black women harder. The only thing that can continually morph into something better is my attitude and perspective. That in itself brings me a bit of much needed solace, in fact I wish the best-case scenario for all of you too.
So I guess opting to pretend my shenanigans will actually effect change in my outcome is a bit of denial mixed with hope. Each served in the right amount I actually recommend. Yes, I crave my old independence. I sometimes cry for it. I still morn the loss of it. But after I get a grip on reality and become grateful for what I do have, I wipe my tears, take a deep breath and then…continue grasping for straws.
To quote you “It’s the never ending dependency on them that’s wearing me down. I want to go about life on my own terms. I want to go where I want, when I want and with whom I want. No questions asked” So true. You ever wake up and say I faked it all, fooled all the test, the MRI’s are wrong? I’m 42, diagnosed at 37 with SPMS. But my blessing is my children, my 17 year old makes me laugh at things MS does and my 3 year old keeps me laughing and appreciate the small things like play dough (we don’t eat) and being princess and it’s okay to fall down, just wipe your knees get up with a smile and keep going. and it will never hurt anyone to have ice cream and cereal for dinner.
MICHELLE, Thanks for the reminder!
Reading this felt like I was reading my daily journal! Thank you for sharing and reminding me that I’m not the only one!
nicole, i can sympathize with you so much… i feel that after only two years of being diagnosed, i am more scared, more aware of whats to come, more confused and more in pain. treatment not working which is so scary to me…. lost complete bladder control but praying they have a “fix’ for that soon. having to hear the words “changing treatment” is so scary, cause it just puts in place that i am getting worse….. you are an inspiration, and i am sending big hugs from jersey! xoxox i am right there with you, i am so not the girl i use to be, and i am coming to terms with the fact that she is gone… comeing to terms not so well though… xoxo
nicole,
you have a wonderful way of putting things into words!!! i always feel guilty when i have these kind of thoughts, but the way you write them makes it seem ok and normal. i really appreaciate your blog!!!!!! xo
Good morning Nicole I feel the same way. I just never share those feelings with anyone;so glad to have a place to share those unspoken feelings. I still believe you have to have ms to know the trials we experience daily. I’m often asked so what are you going to do today;me thinking are you kidding) I put my own clothes on today,brushed teeth,made coffee using cane made it through another day while watching new 6 month old grandbaby 8 hours 5 days a week just waiting on weekend to prepare for another week while still realizing I’m blessed although lost my independence about 5 years ago.
hope eveyone have a good weekend : )
Angela, I know what you mean. Sometimes just getting dress is a big deal. I too am grateful for this space to share.
You are NOT alone Nicole.
I am 16 years in and will never fully accept it. We (me & MS) have come to terms, but we still don’t like eachother. After a tumble, I swear at it like a sailor. And when I am enjoying myself, it is always quick to throw in a spasm or two to remind me it is nearby.
Sock, Yes, we are in this together.
Nicole, I just found your site today and am loving all the post. I don’t feel quite so “alone” in dealing with MS. Thanks!!
Tammy, Thanks for stopping by. FYI I put out posts on Tuesdays! I’d love for you to join us here. Wishing you the best!
It’s telling me I have a dupe comment, though I’m not seeing it. Here was my insight-
The “Nicole died 13 years ago” comment is what really punched me in the gut. It’s something you honestly don’t want to admit, but you do die a small death when you hear those words.
I’m coming upon my third year since diagnosis. It is still playing a lot of emotional havoc for me. I hear a lot of the “well, you can still stand/walk/have use of most of your limbs!” Guess what, that doesn’t mean a thing to me in the moment my formerly “good” leg goes numb and refuses to move. My mind always goes back to when I could still heft a 75 lb piece of equipment all by myself. Dropping my 10 lb cat, when my hand decides it’s done, devastates me, in light of that.
I’m starting to get the point about “resurrection”, though. Little by little, I’m going to get through. That’s what this is and it’s what I need to accept, otherwise I stagnate. Thanks for putting to words what I’ve been running from. 🙂
Jenn,
It probably said that because although you couldn’t see your comment at first it was still there waiting for me to log on and approve it.
I had this disease for 7 or 9 years before it was blatantly obvious something was wrong with me. I know the place you are has it’s own unique set of problems associated with it and I do respect that.
Thanks for reading and keep moving forward!
“Grasping for Straws” offers an excellent visual image. I’m glad I tuned in today. Many of my thoughts were articulated here. Aloha.
Renel,, Well I’m glad you tuned in today also! Thanks for reading.
very good explanation of “grasping for straws”
Dad, it was inspired by you!
As always Nicole , beautifully said.. put me to think about my own ” attitude and perspective.
Ella
Ellajean, Thanks. So what did you come up with?
Dear Nicole, I Thank you for this post. I have never read anything so compelling. It is as if you were inside my head and heart. I try to write things down on how I feel but couldn’t quite get it. You hit the nail on the head! Tears started streaming form my eyes. I had to stop reading a few times cause I couldn’t even see. I will be following your blog from now on. I am with you what other choice do we have but to keep on keeping on. I pray God keeps you well and your spirits up. You are a wonderful writer. Blessings ~Patty ~
Patty, I’m so glad you found me too! Thanks for reading and please know that I do new posts on Tuesdays. If you don’t mind me asking, how did you find the site. I like to know who I need to thank!
Hi Nicole I love to read your blogs. You always write exactly how I feel. Take care of yourself. Mary T
Mary, Thanks so much!
I was diagnosed 13 yrs ago. The first 6 or 7, I looked totally normal. The last 4 have been a challenge. My MS is no longer invisible. My right leg causes problems.
Interesting thing is happening to me.
First I was on Avonex for 7 years
Next Rebif for 1.5 years
Next Tysabri for almost 4 years
My walking just continued to get worse. Neuro says I progressed to SPMS while being on Ty. WTF??!!!
I have been off of Tysabri since November, and have been receiving 2 days of IV Solumedrol each month.
I am still in the process of figuring out what is next. Neuro is keeping a close eye on me. I see him every 8 weeks. So far, I am remaining stable.
I am feeling better than I have in a LONG time. I am walking better. People are noticing!
I have always been pro DMD’s, still am.
I am in a situation where I really have no choice at this time.
So far, so good.
I never really believed we could ‘get better.’ I am starting to believe it now.
Take Care Everyone
Faye
Faye, Congratulations on feeling better. Enjoy it!
Hi Nicole,
What a powerful, insightful post. I think your point about acceptance of the new you is one of the most difficult and most important points to remember for anyone living with chronic illness. You express this so articulately. Thank you.
Gilly
Gilly, I truly agree. Probably even those without a chronic illness too.
Okay, so there is no cure in sight, and the probability is that one will get worse, not better. So I focus on keeping myself in the best shape possible through exercise, diet, and mental and emotional health. I want to know that, if the miraculous cure or effective treatment ever came, I would have kept my body in the best shape possible to take advantage of it. That is my sliver of hope that keeps me going. Has kept me going for a long time. I’m not about to give up now. Yeah, I’m a determined cuss, even if frequently I dissolve into tears. But, if I didn’t feel this way, I’d have to ask the dreaded question, why do you stick around?
Judy. That’s a great way of looking at this. No one wants to ask that question.
Hi, Nicole –
Wonderful post, as usual.
Just curious about diets; you say you’ve tried some. Have you tried the Swank Diet? I started it about 2 months ago, in the hopes that it will make a difference — as it purports to. My neurologist was fairly dismissive, but I figure I have nothing to lose. Wondering about your thoughts/experiences with diet.
Ms. CrankyPants
Thanks. I heard of that diet as well as the Wahls one. I couldn’t do it. I even tried juicing. But nothing came of that.
As a guy, another group traditionally hit harder than average by MS, I understand well what you seem to imply with a sense of fatalism in the idea your MS will get worse not better. I tend to think this fate awaits me too…if I allow myself to be tied into measurement scale of my old abilities. When I do, I think the biggest thing MS has taken from me is “hope.”
But what if the issue is one of perspective. If I sit around lamenting all the things I could once do for very long, I start to laugh because in my head I sound like Al Bundy in one of his glory day memories. No, I never played American football, just soccer. Who cares besides me? Like my blogging, I did it only for me.
What if the measurement we should be using is “How much of an impact can I make? How do I change the world?” Before your MS, did this many people care what you thought or did? Did this many people rely on you for perspective?
For me, MS has allowed me an empathy. In a tragic sort of way, it has also given my kids a way to relate to me and draw some strength from me as I have long drawn it from them. They can see “not well” cause me to miss certain things I would like to do, like going to my wife’s birthday dinner. They can see the attitude in Dire Strait’s “Why Worry.”
“There should be sun shine after rain. There should be laughter after pain. These things have always been the same. So why worry now?”
well lived,
That was very nicely put. I never thought about it like that.
Nicole,
Once again a great relative vent.
Loved “morph into something better will be attitude and perspective” ( what is morph?)
The highest energy, frequency we can receive is that of acceptance. Majority of able bodied people have a major problem with this.
I feel I am slightly more tolerant of acceptance since DX, maybe from the grieving of all ability losses.
Gee sometimes think I could’ve got it with a less humbling, humiliating DX.
Some may think of this as denial, a long straw. there are moments I feel this is a
temporary set back, which allows me to learn what I need to. Alchemy.
A
Angela, Thanks. By the way morph here is just a fancy way of saying change. Yeah I have to remember many folks have to accept change one way or another!
Please visit my blog and share your story! Together we CAN beat this disease!