Friday, June 29, 2007

Have I Become TOO Accepting Of Multiple Sclerosis?...

Pardon me while I think/type out loud for a moment...the title of this post has me captivated in deep thought. (And all this time, you thought I was a "shallow" thinker! LOL)

I have been reading several blogs of late and also corresponding with other MSers via email and a consistent *theme* has been churning over and over in my is the title of this post. But more importantly, it is the ANSWER to the title of this post that I am struggling to find.

When I was first diagnosed with MS in 2003, everyone kept telling me to "just accept it"...just "go with the flow"...don't "fight the diagnosis", etc. And, after much kicking, screaming, and gnashing of teeth, I DID eventually come to terms on my level with the disease...I *ACCEPTED* I had it and "it" wasn't going to go away. I *ACCEPTED* the notion of the unknown and worked with my inner fears. I *ACCEPTED* I would most likely be on some kind of medication for the rest of my life. I *ACCEPTED* there were NO fast or easy answers...I *ACCEPTED* there was no reason to sport a pair of "rose-colored glasses" NOR was there reason to trod in the shadow of a personal rain cloud for the rest of my life. Multiple Sclerosis was going to be whatever it was going to be in my life and I would NOT be in control of its process. I begrudgingly, painfully, surrendered to ACCEPTANCE.

The first four years of my MS came with much trial and tribulation...I had relapse after relapse...I developed new symptoms and various medication intolerances. I was hospitalized twice, tried on four different disease modifying drugs with little success, and seemed to develop lasting and permanent disabilities. I was slowly becoming less and less able to function without difficulty and...yes...this, too, I also *ACCEPTED*.

More recently, I was started on Novantrone, which has become a seemingly "wonder" drug for me. My symptoms decreased, I have had NO relapses since February 2007, my prior disabilities diminished, and I found myself returning to levels of functioning prior to the diagnosis in 2003. My OLD life as I had known it appeared to be flashing before my eyes and I literally RAN with this notion! For the first time in four years, I really WAS able to walk with a sure pace and run if I wanted to. My body and my mind adjusted quickly to the idea MS was no longer in control of my every moment and thought...and yes, this TOO, I *ACCEPTED*.

Over the past few weeks, I have been unfortunately experiencing a return of fairly serious spasticity and stiffness in my fatigue level is inching its way back up on the notorious scale...I am having muscular pains in my legs, hips, and back. I am being reminded of my MS on a daily basis again...AND...I am having great difficulty ACCEPTING this.

Having had my few months window of normalcy, I am now constantly reminded of what my life *could* be without MS constantly knocking on my door...I am reminded of the many wonders of life and the simple things I often take for walking without pain OR simply being ABLE to walk. I am reminded of the ease at which my life *could* travel without physical difficulties...I am reminded of what my life SHOULD be like...without MS.

There is a tiny voice inside my head that repeatedly whispers, "Just accept it" and, I know how much calmer my mental state would be if I DID just accept it. I know how much less fear and angst I would experience if I DID just let it just embrace my MS once again with open arms.

But I can't help but ponder what I might be GIVING UP and GIVING IN to by just *ACCEPTING* my current symptoms again? Should I just settle for my current state of being and not FIGHT for a return of "the good life"? Where does that fine line fall between *ACCEPTING* where I am at on the continuum of my MS and diligently SEARCHING for something better?...actively fighting for whatever drug/exercise/rehabilitation/physical therapy/snake oil might IMPROVE my current state? How do I know when to "Let go and let God" (as they say in Alcoholics Anon when surrendering to that particular disease) or use the brains GOD gave me to figure out something better? When do I say, "This is how it is" versus "I can fight this"?

One of my dearest spiritual teachers once told me a story about her life several years ago where she became immobilized by choices. She told me there was a time in her life where she was so deep in thought about choices that she simply could not choose. Everything in life became a pondering go this way, or choose a different say this thing or choose to say something do this with her life or choose something different. The idea of choices became immobilizing. One day, she remained in bed for THREE days stuck in the notion that whatever she chose to do when she got out of bed would alter her life.

On the third day of staying in bed and hiding under the bedsheets, she had an epiphany...STAYING IN BED AND NOT CHOOSING WAS ALSO A CHOICE. This realization had a profound impact on her life at that very moment. She *chose* to get out of bed and continue living, no longer bogged down with guilt, questions, or ideas about her life choices...her life just simply "was".

I think about this example now as I question my *ACCEPTANCE* neither *choosing* to accept my current state with my MS nor *choosing* to "fight the good fight", I am left immobilized. Nothing changes for the better, yet my Multiple Sclerosis continues along its merry path of disease. IT will NOT stop for me to wait to *choose* what I want or need to do in response to the many curve balls it throws at me. My MS and its symptoms is a fluid disease, always changing, always variable. And my response to it will most likely mimic the disease path...always changing and always variable in my level of *ACCEPTANCE*.

So, today I'm going to go ahead and get out of bed to do the things I need to do, even WITH my pain and discomfort. I will make myself exercise and eat healthfully because I know this is the "right" thing to do...I will take the drugs prescribed to try to lessen the effects of the pain and discomfort...I don't HAVE to *ACCEPT* my MS today, but I DO have to live with it for now...and THIS is also a choice...


Sara said...

Really good post, even for us non-MSers! I hope that by getting out of bed, exercising & eating well you felt a tiny bit better today, even if just by knowing that the MS didn't "get you down" today.

I believe (and of course this is only my opinion) you have to accept the disease, but that doesn't mean you can't fight to live your life.

I grew up with a recovering alcoholic mother, so I've heard "let go and let God" many times, but I think sometimes after you've let go & your higher power has given you something then you have the right to take what is given & do something with it - but then agian that's just my 2 cents - what the heck do I know?!?!?!?

Hope you have a fantastic weekend - I'm just hoping for an hour of sun this weekend (been raining for over a week straight now - ugh!!!)

Peej said...

I've often heard people say "acceptance is defeat" and this, at least with MS, makes no sense to me. Yes, you need to do your research and see what new treatments are available BUT while you're waiting for "the cure" you also need to achieve peace of mind. How can you do this without some level of acceptance?

I've accepted that MS is, and most likely always will be, a part of my life. This doesn't mean I've given up on feeling good or living each day to the fullest. It simply means I'm not going to slam my head against a brick wall trying to change the unchangable...

That prayer which goes something like this... "help me to change the things I can and accept the things I can't -- and grant me the wisdom to know the difference." says it all.

Just my .02 for what it's worth. :)

harkoo said...

I worked with alcoholic women when I was a nurse and I always have thought their prayer of "helping to change the things you can and accept the things you can't and be granted the wisdom to know the difference" were the wisest words i have ever heard and i try to live by them to this day. No big deal about accepting you have MS-you would be crazy to deny it at this point, but you still chose to fight it in many ways without giving up. And your blog helps people. In fact, i have never seen such a fight! But forgive yourself if you want to stay in bed somedays and say screw it! That is the weirdness of MS--it is always fluid and unpredictable. I am more spiritual than putting my faith in a "God" figure and you won't catch me in a church as i have never seen such evil perpetrated by some of those people who say they are regular church goers. The bejeweled ladies who tithe wouldn't be caught dead talking to a homeless woman who is intoxicated. YOu can all hate me now! That being said, It has been my observation that the God force seems to pick out her more interesting creations and shake things up for them to see what they are truly made of-to see how high the human spirit can go. Again, it has been my observation that the people in life who have everything go well with no glitches don't matter a hoot in the end--it is the people who have had difficulties, who have been brought to their knees who shake things up, make things happen in the world , truly know sensitivity toward their fellow man, and who appreciate the simple things that make life worth living. I think she is very proud of Linda. I am.



And I, too, hope you have a cloudless weekend! Thanks for always sharing your thoughts here in the comments of this blog...I ALWAYS enjoy hearing from you and anyone else WITHOUT MS. I think sometimes having a "fresh set of eyes" (or eyes without optic neuritis!) peering into the world of MS is very refreshing! And, we all DO share the same path in so many ways...troubles and triumphs just take on varying forms is the only difference.

Thanks again for your insights...




Your "two cents worth" is ALWAYS valued beyond currency! And I agree with the not banging your head against a wall comment...damn near gave myself a lasting concussion early on in this disease! LOL




I am simply left speechless by your comment...and nearly moved to tears. Thank you...

(And I'm also glad to see you back...has the weather relented yet there?)


tidesong said...

Hi. I just wanted to let you know how good it was for me to read a post like this. I found it through a search for "MS" I have on news feeds, and I'm glad I clicked on it.

I was diagnosed in January after a major attack started in October. Diagnosis was confirmed in March by an in-house second opinion. I still didn't believe it. I had an out-of-network second opinion visit up at the Mayo Clinic this week, and I'm *still* having a hard time coming to terms with this. It really helps to know someone else struggles with it. In fact, another dear friend of mine is struggling with a diagnosis of her own, of another life-altering kind of health issue, and I pointed her in this direction. I hope she reads it, too.

But thank you again for posting this. I'll be back from time to time; your posts seem like they're good for my spotted brain to read.... *HUGS*


Zee said...

As others have said, Linda - excellent post.

I'm reminded of something I hear frequently in AA meetings: that surrendering and giving up (to a higher power, generally) gives you the freedom to live your life fully. Similarly, I think having a diagnosis means that you know what you're dealing with (as much as anyone can know what MS is planning to throw our way!) and you have a variety of ways to attack it. Knowing your "enemy" is half the battle - and accepting it makes it easier for you to determine your next steps.

And, also - another "AA-ism" is that you can accept something in your life - particularly those things you can't change - but you don't have to like it. I don't particularly enjoy or like having MS, but I have accepted that I have it and that my life is on a different road than it was a year ago.

I do tire of a lot of the people who plaster "I have MS but MS doesn't have me!" bumper stickers on their car or wear those rah rah rah t-shirts. MS sucks. There are no two ways about it. If it were a good thing, they wouldn't call it a "disease." :)

Seems to me, doing what we with MS have the energy and emotional strength to do, each day, is the most sane way to approach things: sometimes you just don't want to get out of bed. Sometimes you can't walk right and going for a walk is MORE trouble than it's worth. That's life and no accepting it is to live in denial...

Anyway, I'm blathering now, so I hope you can find a point somewhere in all that. :)

Funky Mango said...

I accept that I have MS. I accept that it restricts what I can do physically (I can't walk far, I'm permanently fatigued etc). What I DON'T accept is that it restricts "what I can do". I'm going to go on living as full and as happy a life as I can, for as long as I can.

There's the physical you and the you you. From reading your blog I know you're one of the people who're always going to keep on fighting to be yourself - you go girl!

pb said...

Never accept! Never, never, never. The accepted "wisdom" was that I would wind up in a wheelchair.

Maybe so, but today is not that day.

If I have any say at all in it, neither will tomorrow.

Keep on keeping on, Kid.

Joan said...

I completely understand your musings in this posting. I am a long-time MS'er who struggles with this same topic on a daily basis. I continue to wonder "am I just giving up or am I simply accepting?" I recently (finally) agreed to get an ankle foot orthosis (AFO), a brace to keep my right foot from dragging. Should I have exercised more instead? I also caved in and got a handicapped placard for my car. Now I'm just being lazy. Yet on days when I refuse to wear my brace, I feel like I'm dragging a concrete block. When I don't park close to the building, I'm exhausted when I get to my desk and can't work well. Am I being lazy, have I given up or given in? Dunno...

I invite you to read my story at

Thank you for setting up such a interesting blog! I will bookmark this one!

DX didn't come until 1999

Steve said...

While I don't know what it's like to live with MS, this hit a little close to home. As I've mentioned before, my wife's parents both have/had MS. I can't know what actually happened with my MIL, but the story I'm inclined to believe is that she was basically told upon diagnosis in the early 80's to quit her job, give up on driving, apply for disability and resign herself to a sedentary life of TV and books. I'm inclined to believe it because she's brutally honest, and has also done exactly this (in contrast to my wife who could be president if she wanted to be).

I guess what I'm saying is, we can't live each day for fear of what may happen tomorrow. It's a great tragedy when people live down to expectations, rather than up to potential.

Dylan Thomas wrote:
"Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light."

I'm a sucker for poetry, but this poem is famous for a reason.

And for the record, I'm not saying that you're old. :)



Hello and welcome to the HOUSE OF CHEESE. LOL It's very nice to meet you!

Sorry to hear you are yet ANOTHER club member of MS...I'll check out your website as the screen name "tidesong" intrigues me like a cat with a mouse...




As always, your comment is filled with wisdom! I used to say at work that I could do ANYTHING for 8 hours a day and, for the most part, I can...but 8 hours sure does DRAG on and on sometimes! LOL

How are YOU doing? Have you made a decision about your next treatment approach yet? I suppose I should check your blog to find out...




AAAAAmen, sister! I doubt I'll ever give up a good long as there is something worthy to BITCH about...LOL




Thanks...will do! And it's nice to see you here blog reading has fallen a bit "short" lately, so I can now link to your blog from your comment...thanks!




Hi your story on your blog yesterday (I think?!?). I really enjoy your writing style as you have a great way of making your thoughts/feelings clear and direct. Eventually I will get caught up and slow down in my life and be able to add your blog (along with others) to my daily read list as I would like to know how you are doing.




Briefly...ever so briefly...I thought you were referencing BOB DYLAN! That happens to those of us with MS...we read what we want to see...LOL

And thank you so much for the email and checking in...that was a very sweet thing to do and I really appreciate it. For the record: I'm OK...tired, in a bit more pain than a month ago, but STILL my snarky self!


Miss Chris said...

I accepted my MS right away and my family and friends thought I was in denial. They soon realized they were wrong.



I, on the other hand, went kicking and screaming down the path of "acceptance"...and my friends thought I was wrong, too. LOL


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tidesong said...

Nice to meet you :) The name "Tidesong" was something I made up about 10 years ago. It's interesting to find others using it now, too. NO, MINE! *giggle* My LiveJournal will seem incredibly boring, unless you're a member of LJ on my friendslist...most of my entries with any content are locked. But if you have an account, or end up making one, let me know who you are, and I can add you if you'd like. :)