Carnival of MS Bloggers #82

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Love, Pride, Brains, Research, and Courage

4-Letter Words

by Kristie of X-Out MS

Today I had to do something that I never thought I would.  I sent my husband (at work) a 4-letter word message.  Just 4 letters. At a point where I didn't know what else to do - scared to no end - the world around me spinning faster than I could handle - and the only thing that popped into my head & that I was able to communicate was a dreadded 4 letter word. 

What was it?

Help.

That 4 letter word for some reason takes so much for me to ask for - and when I do, I feel almost shameful.  It's literally acknowledging that I can't do it on my own & I need someone else to assist me.

Super frustrating.

Then - my husband appeared at my car window - tapping to get my attention as I lay there with my eyes closed to the spinning world around me - and I was filled with the realization of another 4 letter word that I like so much better.

Love.

Run your own race

by Dan Digmann

I realize we aren’t all runners, but hear me out on this.

So the other night I was running on the indoor track at Central Michigan University’s Student Activity Center. It’s where I run in the winter. Not that I mind the cold outside, but it keeps my MS-numbed feet and me from running/slipping/falling on the ice and snow.

Nine laps make a mile. The middle lane of the three-lane track is intended for runners. And this time of year, the SAC track is packed with college coeds eager to sculpt their bodies into spring break shape.

This is my fifth winter running at the SAC, and I had an epiphany the other night when a runner blew past me at lightning-fast speed.

Here's a photo of me running at the SAC that was featured in a Morning Sun article last year.

In previous years I would have trashed talked him in my mind, calling him a showoff and wannabe and thinking how damn funny it’d be if he tripped and fell. Nothing hurt but his pride, but that’d be enough vindication for me.

But this year a kinder, gentler Dan had a more mature thought about this man who sprinted by me as though I was standing still. Rather than hate him, I truly saw myself in him. Because that was me … just two days earlier. I was the one blowing by everyone else.

Two days earlier I was speed training. Sprinting half a lap, jogging for one. Sprinting half a lap, jogging for one. I wasn’t showing off. Not entirely a wannabe. I was running my race. For me.

So many times with MS and life, it’s easy to compare myself to how and what other people are doing. Who would have thought a keeping-up-with-the-Joneses attitude could work its way into living with a chronic illness?

This is where I’m grateful I got into running because the lessons I’ve learned there have helped me to mentally move forward in my life with MS.

When I enter a race, the success of my race is not determined by how I finish overall or within my age group. Rather, how does it compare to my personal best time? My personal best time.

Oh sure, it’s great to place among other competitors. But even then, are we satisfied? One time several years ago I honestly placed first in my age group. Rather than fully celebrate first place, I downplayed it and made excuses (“But there were only two in my age group!”). I imagine I would have been more proud and perhaps even bragged about it had it’d been a personal best.

So I try my best to focus on what I’m doing in running and in life and compare it me. My dreams. My abilities. My circumstances. My goals. My personal best.

And how my personal best compares to everyone else is either excused by my disease – “Yeah, but I have MS” – or an added point of pride – “Yeah! AND I have MS.”

Know yourself, and run your race.

Taking My Brain Back from Multiple Sclerosis

by Diane J Standiford

In my new life at the assisted living/retirement community I had to move to (TWO YEARS AGO! WHERE DID THE TIME GO?), there rages within me the desire to build some new brain cells and paths up there. Many firsts and "never tried before"s have taken place. I hope my brain is growing a bit.

When we are babies, EVERY day is packed full of "never tried before"s, then with each passing year we try less and less, just a fact of being human. So, while I know I'll never catch up with that growth during my earliest years, I will do as much as I can.

Never ate peppers before. Never played Bridge. Never met so many people. Never wrote so much. Never read so much. Never typed so much. Never ate oatmeal, grits, Gouda cheese, asparagus, beef jerky, my stomach must be going crazy. Never spoke Swahili. Never learned so much about the Bible or Beverly Hills. (I thought Palm Springs was in Florida--all knowledge from Blogs I've followed.) Never used skin cream. Well, just never have done so many new things since I was a baby. And you know what? I think it is working. My brain says it is having a blast.

"You never___?!!" Yeah, I get that a lot. I'm 53 and doing it now.

Last week I played a great hand of Bridge. Got the cards and played them well. Nine diamonds, partner opened a spade, I countered a diamond, then back with 3NT. (Spade lead might have sunk me.) My dummy had 2 aces and west lead went low right to her! She also had two diamonds. Perfect. Yes, after over a year, I am beginning to be able to play Bridge.

Now, a game like this covers it all---being social with live people (not that any of you are dead, but we don't have to use as much of our brain with facebook friends or when reading a comment/blog, we basically rely on previous brain paths to decide if the words are sarcastic or serious or neither or both) forces the brain to interpret many body gestures and verbal cues. Shuffling the deck of cards (which I could not do at ALL 2 years ago, but now do it with a passing C), dealing them (again, took over a year) and holding 13 cards, all digging those brain paths.

Taking my brain back from multiple sclerosis is my new destiny. I didn't chose MS, but I can chose this. I am putting action behind the words, "Fight MS," because we really are at war here. When I read those who post "Fight MS" (in blogs and Face Book), they too often are charging straight into drugs or surgery, both which have yet to be without a doubt proven to help MS AT ALL! (That's right, I said it, again, some YouTube videos and people in an early stage, RRMS, or complete undocumented by the medical establishment/scientists stories of great turn-arounds, are not cutting it with me, *I* could have made those videos and told of such success myself after my diagnosis in 1990---and the only culprit was the natural and proven course of MS doing its thing, being healed by my own body in ways no, NO, medical researcher knows.)

"Pass." "One club." "One spade." "Pass." "Two no trump."
Taking back my brain one card at a time.

Now!

by Judy of Peace Be With You

Share the urgency.
That should be the call to arms
of all MSers.

What is evident:
time is not on our side.
Quite the opposite.

Running on ice floats.
Current research feels that way.
We need a cure now!

The following video was sent to me by one of the persons who worked on this mini-documentary.  It is presented by BYUtv.

Courage: Ryan Ren



Finally, I want to congratulate Marc Stecker, the Wheelchair Kamikaze, for being named the Best Patient Blog of 2010.  Way to go, my friend!!


This concludes the 82nd edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on March 3, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, March 1, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #75

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Courage to Speak Up, Speak Out, and Share

Trapped in a Toilet

by Ragged Warrior

I was trapped in a toilet today. It was scary.

While out and about at an appointment today, I decided to find a salon for a shampoo and cut. I have been so weak lately that I have been unable to wash my hair myself. Since an entire week had passed since I last washed it, I thought the salon idea was a good idea. Unable to find one of the ‘cheap chain salons’ I found an independent salon that had a sign flashing: ‘walk-ins welcome’. OK, so I thought I would just ‘walk-in’.

The only problem was that it was next to a gym with full length glass windows. Ugh!!

I decided to waddle past the gym with my head turned the opposite direction. I don’t know about you, but I don’t want to be faced with skinny people jumping up and down for no reason. Plus, I didn’t want them to think that I cared if they pointed their finger at me and started laughing. So. I held my head high——and looked the other way while passing the spandex people.

I made my way to the welcome desk and asked if they could fit me in. Little did I know that the halls and booths in this salon were only 1 inch wider than my walker. And nothing could have prepared me for what would soon happen.

The receptionist said “yes, Tracy can help you in a few minutes”.

“OK” I replied.

I entered the salon area and pushed my walker through the aisles knocking brushes, hair sprays, and applicators to the floor. Women of all sizes and shapes quickly took refuge in all the nooks and crannies they could find, while beauticians pressed their bodies flat against their workspace. I pretended I was OK, but the truth was, I was struggling for each step. They turned away from me; perhaps hoping that they would never be in such a condition. People dressed in suits walked out of their offices, only to see me and turn back around. I hate it when faced with my own mortality, how about you? Plus, you know when you are traveling down the highway and you come upon a ‘wide load’, well it was sorta like that. They kept moving ’round and round’.

Suddenly, I wondered if my bladder might be full. You see, when you have MS, things like bladders don’t work like they are supposed to due to nerve death.

Some ladies are unable to control their bladders and have to carry various items with them. My friend has this. There is a special protocol that these ladies follow. First they use their containment buoys, “bam bam” my friend says, placing the buoys around her leaks. If that doesn’t work she throws trash, straw, hair and golf balls at the leak. The last resort is a concrete hat—it’s so hard to mix up the concrete though. When I am with her I remember to bring rags.

Then there are people like me. We have to push on the darn thing to get it to empty. And that is where our story begins.

So, I nonchalantly enter the handicapped stall and secure my walker. I sit down and begin to think about how I will complete this task. I muster up enough courage and plan the attack. I began pushing with all my might when to my horror, the toilet seat changes its axis violently, with no thought of my personal needs.

I cry out to God.

“Oh Lord, please say it isn’t so please God”.

It’s a true disaster, like an earthquake with Niagara Falls and the Hungarian sludge thrown in for good measure. I begin the inevitable ‘Slip n Slide’ down to the floor, my foot pushing a roll of toilet paper to the other stall. I grab the toilet paper holder and inch my way back up the toilet.

“Oh God!! NO NO NO” I cried!! Please help me Lord…..Jesus what do I do”.

This is where retroactive prayer comes in.

I say to God: “lord…..could you please pretend that I prayed about this this morning”?

I muster my strength to assess the damage. “Lord Jesus please help me” I muttered to myself.

“Oh no Lord….please tell me it isn’t on my clothes…what will I do”. Peeling off layers of clothing reveals the truth, it’s everywhere, in the front and back and down a leg. I am downhearted and blue.  What will I do?
I panic looking for a back door that I could escape from—there is none.

Oh, maybe there are…..paper towels………..oh man—it’s the blower type. I can’t get my rear up that high plus it would look suspicious if I was caught.

I’m trapped–I must plan an escape.
I could stay here and ask that they call 911.
I could glide on the wet path to the front desk and tell them I had a phone call of a serious nature.

OR

I could walk with my head held high, and have the girl do my hair. So, I decide on the latter, I will just pretend that nothing is wrong. If I talk enough, smile enough or laugh enough maybe she won’t notice.

So, that’s what I did. Did they notice? I don’t know. Am I going back? Not in a million years!

Did this really happen? Oh yes!!!

From now on, my friend and I will tag team.

Finding your Voice…

from Carolyne's MS Odyssey

You know, it’s funny – most people would not describe me as a person in any way fearful of speaking her mind. In fact, quite the opposite – I am considered, as someone at work once put it, a “calm, funny, and politely pushy woman”. I took that to mean an assertive woman who gets things done!

As MS’ers, we each have to be our own advocates, and speak out about our health, speak about our needs, ask about options, and so on. We must find our voices when dealing with our situations – especially with the medical community. I am well known within my own circle as someone who speaks her mind, challenges doctors if I feel it is necessary, and is generally not afraid to openly discuss any aspect of health situations & improving health with people. OK – I am pretty much not afraid to discuss anything!

That being said, I had another “a-ha” moment the other day when my sister and I were  discussing the peace of chanting in yoga. I had never felt comfortable doing any chanting – but I enjoy listening to others chant. And I only whispered “namaste” very quietly, feeling too shy to speak it loudly enough to be heard. Namaste means “the spirit in me honours the spirit in you”. So when my sis challenged me to speak my inner voice – voice the word Namaste with feeling…well, I froze. The very thought made me tense up. And it made me wonder – why? Why was I afraid to speak loudly enough to be heard?

I pondered this in the woods the other day. SuperMike and I drove down to the south shore, quietly enjoying the brilliant fall colours and each other’s company. At his camp, while he closed things up, I wandered around a bit, and smelled the crisp air, shuffled my feet in the wet leaves, and simply breathed. At one point, I closed my eyes and whispered “namaste” to the trees around me, reveling in the feeling of nature and the sound of the wind through the trees. Did I figure out why I was nervous about speaking out loudly? No. But it struck me – I had not been down in that area of the province in over two years – since shortly before my accident. Wow – had I ever missed it!

Well – I have begun saying “namaste” more loudly – loudly enough so that the people beside me can actually hear me. And you know what? It is actually a freeing & personally charging sensation! Who-da thunk something so simple could feel so empowering? And it is already translating into other aspects of my life – I found myself saying “No – I need my rest” to people at work requesting more of my time than I could afford to give; I found myself speaking up in situations where I had been taking a back-seat roll. I am the kind of person that will put herself last in efforts to make sure those around her are comfortable and happy. Finding my voice, for me, meant finding the voice that says “I need to take care of me, too – and that’s ok.” For me, I had to embrace that “namaste” means also to honour my own spirit… and follow whatever form that may take in the moment.

That’s exactly what we have to do with MS every day, too, isn’t it?
Namaste.
Carolyne

Part Two Taboo

from Kaleidoscope Muff

Since the blog police didn’t arrest me for my last post, I’ll continue with the second part of this verboten subject. Now, while the bladder blues started for me a while before I began to seek answers about my walking, the bowel bouts didn’t begin under I was going through all the testing. At first – here we go with denial again – I assumed it was caused by the anxiety I was experiencing, but as I researched on my own, that item kept cropping up. If I couldn’t discuss my dampness problem, I sure as H%*# couldn’t talk about this one!

My first real ‘situation’ occurred once again in my classroom – I feel at times that I almost lived there! Since I was a child, I had experienced irregularity. No amount of fruits, veggies, or grains could change me, and I just learned to live with it. That sensation increased as the MS progressed, but it was soon accompanied by another doozey – urgency! As I said, I thought it was an upset brought on by worry, but it wouldn’t go away. I’d be teaching, and suddenly I felt as though I would burst. I’d get a teacher to cover, and I’d make a beeline for the teachers’ lav. At that time, I could still move a lot quicker, and I always arrived ‘in time.’ That wouldn’t always be the case, though. Once more, I was on an evaluation trip not too far from home. The school had presented a beautiful opening ceremony; then they took everyone to a nice German restaurant for dinner. The foods were delicious, but ever so rich. As the evening began to wind down, I felt that feeling inside and I panicked. The room was full of people; how was I to escape? Fortunately, one of my team members came over, and I said we’d have to get to the hotel for our opening meeting. Without my asking, she gathered the coats and I could throw mine on and get out quickly. Once in my hotel room, I could take care of the matter. I escaped what could have been a totally humiliating experience.

Those events continued to happen, but fortunately always at home, and I could move quickly enough. Once more it occurred during a field day in my last year of teaching. Again I lucked out in that I could get home in mere minutes, remedy the problem, and get back to the field day. When I was a principal, it happened more and more – after a dinner out with some teachers (I literally had to dispose of my inner clothing, and wrap myself in paper towels,) on a drive home (it was a forty to fifty minute drive,) and once after everyone left for the day and I was alone. After that, I watched everything I ate, and I always escaped the embarrassment that could have ensued.

After I left the work world, I was able to once again time everything, and I was mostly at home. I had to let Hubby in on what was happening, and he often became my savior by helping me out. Now I keep track of when it might occur, and the worst of it seems to be gone – it’s about ten months between events now. I feel lucky that I’ve gotten away without being ‘caught,’ but I realize it could happen at any time. Two years ago, we left a summer party early because I felt things moving quickly, and I knew I wouldn’t make it home in time. I miss out on a lot just to avoid ‘losing it!’

I know that others have probably experienced similar situations, but I often feel so alone with it. I’m a private person in the real world, and I absolutely could never talk about this. However, here in my little virtual existence, I feel I can let it all out and be honest. So this will conclude my discussion, and I’ll go back to babbling about more appropriate topics. Thanks everyone for your support.

Peace,
Muff

Warriors

from Judy of Peace Be With You

I admire people
whose courage makes them willing
to slay the dragon.

They don’t run and hide.
Jaw set, eyes on fire, they fight.
Best kind of ally.

I am quite grateful
that some of those warriors
are fighting MS.

This concludes the 75th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on November 18, 2010. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, November 16, 2010.

Thank you.

Comments for this post.