Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.
The Hurricane which is MS
by Mary K. Mennenga
When what you can do is stolen from you
The mix of emotions felt are different for each person
That learns their life and all plans made
May need to be changed or at least need a lot of adjusting
The future has become a question mark
What hasn't changed is your heart, spirit and love for life
Your not one to give up or quit when things get tough
Learning it's name M.S. gave you a power over it
Because you knew what it could and would do
M.S. didn't know the kind of fighter you are
You knew the fight was against M.S.
What it took wasn't who you are only what you could do
You are much more than just that
Knowledge is a powerful tool when the fighting must be done from the inside out
Having limits isn't something you've had to deal with until now
Handling this isn't easy when it changes
One day you can the next your body fails it's not your fault
You know what the real reason is and it's not you
Getting people to understand does not always happen
Now all plan's made are tentative to limit misunderstandings
This is when we see how strong you are as you battle M.S.
Yet you still manage to take care of the people who love you
Of course you may not see it that way, your looking outward
We are looking in seeing your heart
That is the most amazing part of you being you
by Gracie's Mum
August is usually the hottest of the summer months in Halifax. This year though, with the rainiest and coldest summer in years, we’re only just now seeing August in its true form.
The warm August winds, although great for drying clothes hung on the line, means only one other thing: the Atlantic hurricane season is upon us.
The most famous of them all to hit Halifax was 2003’s Juan.
With only days to go until our wedding, my sisters got on a plane, before the closure of the airport and made it to Ontario just narrowly escaping Juan’s wrath.
The worst hurricane to hit the Canadian Atlantic coast, Juan was responsible for acres upon acres of damage and destruction, including major natural landmarks, provincial parks, and for the death of a rescue worker.
There have been several hurricanes since we have lived here. In fact the year we did move here there was what seemed to be one after the other after the other.
And although there weren’t many that hit land, last year was still no exception.
In August of last year we were walloped by a doozy that left us without power for 2 days.
Not terrible if you are in the city, but in the country, when you have a well supplying your water and the well pump runs on electricity, you better have remembered to fill the bath tub with water to assist in the flushing of the toilet. Also, it doesn’t hurt to fill up on bottled water for not only drinking but brushing teeth. And forget about showering, you just get used to sponging yourself down with tepid bottled water.
By the second day of eating all the dairy we could handle in advance of it spoiling in the powerless fridge, we gave up and went out to the pub for food since they were one of the few with power in our area.
As we drove around we saw downed trees, power and cable lines and a lot of debris strew over the streets and yards.
It wasn’t the worst of storms but it was a big one that’s for sure.
Hurricanes, although everyone is aware of the season, are for the most part unpredictable.
Yes, you know if one is barrelling toward you, yes you know how fast it’s approaching and we all know there is even a measuring system to predict its strength and force.
And we know that they’re given names and because of that we’re able to remember how bad some of them have been.
But none the less, the actual damage is unpredictable.
Nobody ever knows if the spindly tree in the back yard that should have been cut down years ago will find itself slamming into your roof or front window. Nobody ever knows how high and damaging the waves will be this time. And no one knows how long the power will be out and if they have enough supplies in case the effects of the storm last a really long time.
And nobody knows why this time they were hit or why they were spared.
Living with MS is much like hurricane season.
All year long.
Nobody knows why some people develop MS while others don’t. Nobody knows why some people have mild cases of relapse-remitting that remain in remission for years.
Nobody knows why some people have faster cycling forms of relapse-remitting. Nobody knows why some with relapse-remitting graduate to Secondary Progressive and others don’t. And nobody knows why some people develop Primary progressive right off the bat.
And nobody has the cure.
And even more importantly, those with any form of MS have no idea when or where the next attack will come and what damage will be left in its wake.
Much like hurricane season, many will be ready and prepared only to be relieved from time to time when not much of anything has happened at all.
Many will face a wrath of nature that no amount of planning could have ever prepared them for.
So what do people who live in the path of hurricanes do?
They live, they breathe, they hunker down for the long haul, they rebuild if necessary only to do it all again.
But very few move away out of fear.
They adapt or die.
So, while I start making longer grocery lists that include canned goods, bottles of water, batteries and candles I am confident in the fact that I too am as prepared as I will let myself be for the next one, which has every chance of being the big one.
And when and if it comes I have but one thing to say.
You better bring it ‘cause you’ve met your match this time.
by Gracie's Mum
It’s been a long road.
Bumps, hills, sheer drop offs, delays, missed connections, unbearable traffic, and even more unbearable road rage.
And then, then it got a little swear-y.
I’ve been on this road for almost 5 years and a new road is just around the corner.
In October I will go back to work. And my list of goals that I made, what seems like a lifetime ago, in the hospital after my MS diagnosis, will finally be completed.
I have not returned to work since my departure in March 2010.
That is a lifetime ago.
And since going off my first Disease Modifying Drug in preparation for the switch to the new drug I will be taking, I can’t even describe how amazing I have been feeling.
Even in the early weeks of going from three injections a week down to two I noticed a difference in my levels of fatigue, stamina and endurance. Then I switched to once a week, the difference again was incredible. Now, it has been two weeks of being entirely free of that drug and I feel absolutely incredible.
On top of that, I have a house designed to conserve my energy.
I won’t say I feel back to my old self, because I don’t even remember what that felt like.
It’s been a long time.
I have an amazing amount of energy, but not only that, I have confidence where I had none only mere months ago.
A confidence to allow myself to really be me. To live with MS, but to live in spite of it as well.
I’ve found myself daydreaming about long lost goals, finding an increased passion in old hobbies and a want and desire, not because I have to, but because I want and desire, to plan for the future.
To plan daytrips, weekend getaways, family gatherings, parties, and get-togethers with friends.
To reunite myself with my graduate studies, to finish my program and apply what I’ve learned to my current and future career goals.
To have future career goals.
Because I have confidence that my energy levels will not fail me as miserably as they have before.
For years, my head-down-plough-through-this mantra that I rehearsed every minute of every day, no longer seems entirely valid. I won’t forget it, but it’s up there on the shelf that we put things we no longer need right now, but might need one day sooner or later.
I know that I will have MS for the rest of my life.
I know what MS can do without medication to divert its course.
I know now how one of those medications made me feel.
And I have learned from that experience.
I will try different cocktails of medication, exercise, and homeopathic remedies for the rest of my MS ridden life in order to keep this good feeling going.
I need this and my family really needs me back to being me.
And that I can see her, smiling back at me in the mirror, is almost too good to be true.
But to know, to believe that it is true, is even better.
Have a wonderful weekend!
by Nicole of My New Normals
I see a neurologist to manage my multiple sclerosis. Even though I’ve had this ghastly disease for 11 years now, going to the doctor’s office always leaves me feeing down and depressed. I’m not entirely sure what I expected the doctor to say at this visit, but it was the same old stuff.
Sitting in the waiting room I kept thinking that MS wasn’t in my plans. Those thoughts would usually make me a blubbering idiot. But this time, I remembered some of my own words. I remembered the wonderful comments and support I’ve received both here and from family and friends.
I said before, I am never quite sure what the doctor will say. But that’s a lie. The feeling that I was misdiagnosed is always running in my heart and I thought he’d know. I secretly thought he’d feel that same vibe and would shower a little hope on me. After all, I thought only 2/3rds of the multiple sclerosis population ends up in a wheelchair? What happened to that? I told these statistics to my husband Tommy and he said, “You’re special and make the wheelchair look good.” It’s kind of lame, but I’m a sucker for compliments of any kind.
I thought people, who start out with visual disturbances, like I did, generally do well or at least don’t end up in a wheelchair? What happened to that? Again, all Tommy said was, “You’re special.”
I thought black Americans didn’t generally get this? Well, the gigs up. I’m black and I got it and yes you don’t have to say it I already know I’m special.
Somehow, I feel better but I still need a drink!
by Chris Tatevosian
When I was struggling, my mood was one of nastiness. All my actions had become hidden agendas. My anger and nastiness developed into a learned technique for achieving my hidden agenda. At one point during my marriage I recall my wife saying that she tried to do everything to please me in an attempt to avoid upsetting me. Of course, she told me this so that I would be sympathetic and understanding. As a result, I thought I was being more understanding, but I had also learned that expressing anger was a way of getting what I wanted from her. I was guilty of angrily expressing frustration and hardship likely resulting from the embarrassment of my physical losses such as strength, energy, and simple motor skills. Furthering this problem were the larger culprits: my mental and emotional losses, the loss of my self-esteem, and the development of cognitive difficulties. This behavior became the norm. In my mind I didn’t recognize my relationship-damaging and selfish behavior because my personal struggle to function was all-consuming of both my mental and physical strength. I mean, come on, every simple daily task like tying my sneaker, standing up in the shower or holding an eating utensil became an embarrassing struggle.
Whether we want to admit it or not, the damage to our own egos can cause much anger. Unfortunately, much of it is misplaced anger, and who is the unfortunate recipient of that anger? I’ll take “my wife” for $500, Alex. If someone, somehow, had been able to help me recognize I was acting that way so that I could have changed my behavior and stepped out of that “it’s all about me” fog, my marriage might still be intact today. Having a chronic illness or disability is horrible, tragic, and unfair. If you surround yourself in that fog of misery and self-pity, you may just be involved in a tragic accident, the result of which will be the tragic loss of your relationship, marriage or family.
This concludes the 96th edition of the Carnival.
The next Carnival of MS Bloggers will be hosted here on September 15, 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, September 13, 2011.