Archive for August, 2011

36

Cave Of Pity

Cave Of Pity

Welcome to my Cave Of Pity. Enter at your own risk.

I’m so tired. I feel beaten down by my own personal beast. The beast whose only creed is to slowly rip away all the things I loved so much about myself. What am I suppose to do? I feel constantly whipped personally and physically. Hope seems to keep me lodged in the past. That is, perpetually longing for abilities and a lifestyle I once had. I still anticipate things getting better, but that seems to habitually set me up for a big let down.

In case you haven’t noticed today is not a good day. I’m weak. I’m tired. I’m fuzzy in the head. And I can’t wait for this to pass.

I originally decided against posting anytime I experience indifference. I usually like to leave you with an optimistic message. But tonight I just can’t muster up the strength for even that. My husband, Tommy, suggested I just write what I feel. He said, “Life is not always bliss. Since your posts reflect your life you must talk about the good and the bad.” So I would like to welcome my family and friends to my “cave of pity”. I usually only invite a select few but now I’m opening it up to everyone, warts and all.

I’m lamenting the way I use to be, the way society use to receive me. It often made me proud. Which in itself is a self-absorbent state. I dropped the ball there too! I’m tired of relying on a wheelchair. When in fact I need power transportation. That’s on it’s way too, a scooter thing.

Trapped In A Cage

I feel like MS has me trapped in a cage. Help!!!

I don’t usually whine, but I miss being a relevant part of society. I feel like I’m trapped in a cage and it’s getting smaller and stinkier. For a long time I thought driving would bring me back some normality, but when it came right down to it I couldn’t make the cut. As a matter of fact, I was too frightened to get behind the wheel with the instructor! Honestly I’ve been feeling this way for a while…just secretly. I find things are easier for all parties involved, if I put forth my best effort and just fake the rest.

Hurricane Irene hit the eastern seaboard. I need to be thankful I don’t live in Maryland anymore and send prayers to those I know and love there.

Well tomorrow I get to see my nurse practitioner. We graduated nursing school together! Isn’t that neat? I’m happy for him.

I hate that apathy is overpowering me.

Damn M.S.

12

I’m Special

Doc Office

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.

Mighty Mouse

I read an article where Multiple Sclerosis Was Successfully Reversed In Mice. Too bad I’m not a mouse.

AAAGGHHHHHHHH!

Somehow, I feel better but I still need a drink!

18

Please Take A Shower Tonight

In the past I have introduced the concept of accepting consecutive unwelcomed “new norms” into my life. I was referring to the “normal” for my particular life situation. My husband was in Maryland/DC. I was in Louisiana, but after twelve months apart we were finally living together back in New Orleans. I didn’t however mention the transition period into this new normal. As it so happens that is exactly where we (my husband and I) are at this very moment. That sinister transition subtly begins the moment the excitement of seeing each other fades and you can clearly see reality. That reality is your “new normal.” It sneaks in the moment you stop shaving your legs and go to bed without taking a shower!

I was a track star in my own mind.

I would run 5 miles on the track.

Due to Multiple Sclerosis, a wheelchair steers my course and shapes our new normal. I used to be an avid runner. Now, fatigue,a common symptom of M.S., dictates our daily routines. I use to handle a 40+ hour work week. Today, muscle spasms leave me stiff as a brick and at other times so loose I have trouble grasping a ballpoint pen! A little over 2 years ago I was totally “normal” and my husband and I were working in Maryland/DC/VA.

With these challenges, I know that acceptance is the way out of sadness, pity and the mourning of who I use to be. I usually have to hit rock bottom before I can rise up. Gratitude for the things I have and can do today is ushered in. It seems easy enough, right? The key is that I have to remind myself of these things daily…even moment to moment. I can’t depend on anyone else to do it for me. It needs to be the constant backdrop behind my life, my new normal if you will. It’s tricky! Often, at the exact moment I need to do it, I can’t. It takes me a little time. So my goal is to slowly try to decrease the time between the frustration/attack and the moment of acceptance/gratitude. That’s a lofty challenge to undertake!
That being said our transition can be as smooth or as rocky as we (mostly I) choose to make it! I thought it would be easy once he arrived here in New Orleans. But I need help with just about everything and I can’t stand it! It’s demeaning and bad for my ego! I love that I can pull my laptop out while lying right beside him and write. He has no clue!!! To me this is exerting my independence and it feels great!
I have to make it clear that he does nearly everything around the house: cooking, cleaning, washing, oh, due to accidents with bleach, I don’t wash his clothes. Instead, he washes all our clothes! He definitely does more than his fair share around the house. Once again, yes I am grateful for that but doggone it, I can’t stand that either! Don’t be mistaken, I help out too. Now I’m responsible for the towels around here.

Please Take A Shower Tonight

Please Take A Shower Tonight

It’s getting smoother now. I am defining whom I am now as oppose to who I use to be. I’m reluctantly dealing with my new limitations, while Tommy is trying to keep me happy. To be honest he is totally fine. Totally fine! I’m the one refining!

Oh by the way, “Please take a shower tonight” is a quote from Tommy.

14

What Would You Do?

 

As a nurse and an avid reader I am well aware of the downhill trajectory of multiple sclerosis.  But it’s an entirely different ballgame when it happens to you.

This particular Saturday had been dubbed as a day for my best friend, her 2 -year-old daughter and me in my new pimped out wheelchair. Well, my friend came to get me around 3ish. She made sure I would be able to propel myself. She literally asked me.(Mistake #1)

I assured her it would be fine. Mistake #2 (I had my fingers crossed.)

First of all any day out with old friends is a big break from my everyday reality of physical therapy and doctor visits. I really wanted to see both of them, but leaving that late in the afternoon in this Louisiana heat would physically wear me out. I knew this.  But I carefully neglected to tell my friend for fear of the date being cancelled.  I couldn’t pass up an opportunity to shop at the Tanger Outlets with my goddaughter.

So what happened? Picture this. By 6pm my friend was trying to manage me in my chair and the baby in her stroller at the same time!  My left arm just checked out. It was if I don’t lift 10lb dumbbells daily.

The wheelchair would roll left. The stroller would go right. We tried letting the baby walk and push her stroller with my help. But that was almost laughable as well. People were just walking by as if this scene was normal. We felt like this was something out of that ABC TV show “What Would You Do?”. I’m not quite sure what I expected them to offer, but we just needed help. It was pure comedy to see us struggling with the shopping bags, the stroller, and the wheelchair as on-lookers walked casually by us.

I knew this could happen. I just looked away and hoped for the best. Really kind of selfish if you think about it. (Mistake #3)

We were past desperate. My friend asked a complete stranger for help with pushing me into a nearby store. I was mortified, the stranger was mortified, but in the end, we needed help and he provided it.

We were troopers!! We both have a great sense of humor and we have been through so much over our 20+ years of friendship that in the end we could laugh about it and make plans to be better equipped for our next outing.

I’m glad I’m right handed!

After a good night’s rest I’m confident it’ll get better.

Next time I’ll start the day earlier, I’ll be honest about my capabilities, and I’ll consider everyone involved.

 

But if that doesn’t work I’ll give ABC a call.

23

Able Bodied

On Becoming Fearless-Arianna Huffington

My legs aren’t strong enough to carry my weight. It’s a strange thing to see, much less to live through. These days I find myself constantly dipping into my arsenal of positive mantras. Oftentimes, nothing seems to cut into this abyss of misery. Thank goodness my wheels for my wheelchair arrived!

You have been on this ride with me for awhile. I hope I don’t often come across this somber. I think it’s because I’m seeing a habit forming. A “new normal”, if you will. I can use my walker around the house. But it’s getting harder to do even that much. I had a revelation the other day, no matter how much physical therapy I do, it will only carry me as far as MS will let me go. Does that make sense to you? Because it’s taken me years to get that lesson! I’ve left many gyms crying in defeat.

On another note, I find that going out to our usual hangouts in the French Quarters is starting to bring to the surface lots of negative emotions. How do I deal with that? “Bibliotherapy” (I made up that word.) The definition is: have a problem? Get a book and read about it. Simple. Libraries, bookstores, Kindles are all fair options.

Well, a book I read a while back comes to mind here. In On Becoming Fearless, by Arianna Huffington she stresses that I should still do whatever it is I’m afraid of, but instead do it with the fear. She’s not expecting the fear to dissipate. It stays but in essence it becomes powerless over me, because I have resolved to do it with the fear. I’m doing it anyway. Instead of expecting it to go away, I tolerate its presence and keep moving forward. In my case it may be going in a crowd of able bodied individuals being the sole person in a wheelchair. What’s yours?

At least I’ll be rolling through downtown in style with my pimped out chair. Vanity never fades!! LOL!

Mondays and Wednesdays 1 to 3 p.m.

We Always Have Fun On Bourbon Street


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