Thursday, June 17, 2010

Carnival of MS Bloggers #65

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

The Future, Our Friends, and Overcoming Denial

Raggling One’s Bed by Katherine, aka oligoclonal
at Properly Referred to as "That Stupid Disease"

The clinical version of MS “fatigue” is certainly a different breed of animal than what I understand to be in the “normal” range for people who do not suffer from MS.
Today, after a full night’s sleep, proper diet and hydration and pretty standard low-intensity household activities, I began to crumple. Within an hour of trying (as always) to fight it through, I was face down on my mattress as unmoving as though asleep. Were sleep only a possible relief, that is. My mind, though “foggy,” was pristinely alert; though not suffering from actual paralysis (another different animal altogether*) I could not make my body move — from a corporal weakness felt not even by long distance runners after a full day of ankle weights.

So, for two hours I laid motionless. As soon as I felt the possibility of movement, I sat up and walked into the kitchen to start prepping a dinner salad for three. I then went into the pool and came, with the cool water bringing my core body temperature down, more awake than I had been all day. The “cog fog” lifted into the clear blue sky and I was able to swim heartily, and laugh.

I will never again be certain of what tomorrow will bring. The thought of that no longer frightens me, but it does bore me to pieces.

*Having MS makes friendships and general life activities difficult because when attending an event or invited to someone’s home there is no predicting which animal from the zoo will accompany you. There will always be a monkey on your back (a given cliche) — but sometimes, too, a tranquilized elephant or angry flightless bird. And your friends or strangers will not know which you’ll happen to have with you.

Or, perhaps, think of me this way: if you are my friend and invite me over, know I will be bringing an infant with me who screams at random intervals and cannot be consoled.

Untitled #2 by Katherine

It's not always about me
by Catherine at A Life Coping With MS

Getting frustrated about things I cannot change is something I usually don’t indulge in. I’ve always had the attitude that what’s done is done so you’re better to face it head on than stress about the stuff you can’t fix.

My approach to my MS diagnosis has pretty much followed this path and it has stood me in good stead so far.

However, there is one aspect about having MS that frustrates greatly - and it’s something I will never be able to change. And that’s the impact my illness has on those around me.

This hit me hardest when first diagnosed. While I was striding forward, convincing everyone in my wake that this really wasn’t the worst thing to happen, I watched my husband and parents struggle to come to terms with it all.

Looking at things from their perspective I would probably be the same. After all, when someone you love is hurt, whether that be a cut on the knee or a life changing diagnosis, you want to kiss it better.

But they must look at me and I think, ‘What can I do to help?’.
In truth, despite not having a magic wand to make me better overnight, they have helped massively, in all sorts of ways.

My mum helps with practical stuff like the ironing and she has this unbelievable gift of coming into my home like a whirlwind and somehow leaving 60 minutes later with a clean house left in her wake - genius!

My dad just keeps the jokes coming ... and then, every so often, we have a heart to heart where I get to off-load lots of stuff I’ve been thinking and/or feeling and I feel miles better.

And then there’s my darling husband who worries like mad and takes the brunt of any mad mood I may indulge in. He has held me tight while I’ve sobbed (which I might add happens so rarely I think he’s sort of glad I’m actually having a cry so I’m not trying to be superwoman all the time!) and told me very patiently that no matter what the road ahead brings, we will face it together.

The Parking Permit or How I Conquered Denial
by Karen at Meandering...One Moment Please

How come...before I got my Accessible Parking Permit, the only empty spaces in the lot were the handicap ones, and now that I have my permit - those spaces are all full?!!

About a month after I was diagnosed with MS, I got my Accessible Parking Permit. I had to go down to the DMV and get my temporary copy to use while I was waiting for the spiffy laminated one to be delivered in the mail.

Driving home, I was thinking, I will probably never use this, I don't really need this... nah, I won't use it, I won't even need to use it! (DENIAL) I pulled into my driveway and turned off the car, took the permit from my purse and thought, where should I keep it? In the glove compartment maybe, or tuck it in the visor. As I sat there trying to make this momentous decision, the "funniest" thing happened. I was looking at the permit, and saw the initials P/D on the front. Hmmmmm...wonder what that means? Underneath the initials, was one word; PERMANENT. Huh? What are they talking about, this is my temporary permit, I will be getting my permanent one in the m.........

At that moment it felt like all the air had been sucked out of the car! It was hard to breathe, I could feel my heart pounding hard in my chest, my throat tightened as a low guttural scream struggled upward, trying to escape between my taunt lips, tears welled up in my eyes. Then it happened...IT HIT hit me right smack in the face! I have Multiple Sclerosis, it's for real, I'm disabled, and it is definitely PERMANENT!

That one little piece of paper said it all, and denial was no longer an option. I just sat in the car and cried for about half an hour. Finally, trying to pull myself together, I hobbled out of the car with my cane, permit in hand, and made my way into the house.

Hubbers was just in from work, and as he helped me take my boots off, I said, "Got my parking permit today". "And how did that go?" he asked? "Not so good", I whispered tearfully, while poking at the word permanent on the permit. He nodded, and I saw his eyes moisten, just before he wrapped his arms around me.  He held me for what seemed like the longest time.

It was a torturous night for both of us, neither of us able to sleep or even talk much. I spent most of that evening transfixed by the flames in the fireplace. At some point I had obviously drifted off, because I woke, the fire was out, and I could smell the aroma of bacon wafting out from the kitchen.

Hubbers heard me stirring, and brought me a hot cup of tea  served with a smile and a kiss. At breakfast, we talked a bit about our plans for the weekend, and he mentioned that we had yet to start our Christmas shopping. With a pained groan, I said oh no, not the mall, we can never get a parking spot at this time of year...

And the history ;)

This concludes the 65th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on July 1, 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, June 29, 2010.

Thank you.

Comments for this post.

1 comment:

  1. Thanks for sharing these, Lisa! These were excellent posts, and I honestly can say Karen at Meandering...One Moment Please brought me to tears because I so can relate to her post and the reality of the word, "Permanent." For me, the permanent is that until there's a cure, I, and my wife, Jennifer, will forever have MS and when that first hits you, OUCH! It slams you pretty hard. Here's to the friends, family, faith and stubborn self-determination that helps us all to continue moving forward.