Archive for January, 2012

36

Short Sale

I wonder how far I would have climbed in my career had I not limped through disability’s door? My goal here is to first be genuine, but at the same time share my true feelings. I hope to have you leave feeling lighter than when you came, because the reality we share can be so hard and heavy.

I know I shouldn’t compare myself to others, but it’s hard to resist. It’s so easy and tempting. I miss the life I had before. Despite this, I know there is a lesson to be learned, I just have to uncover it. I’ve tried my gratitude strategy, but this time it fell short on me. I’m still right where I started.

It never fails every time I find myself in this place I leave dragging my tail. It all started when I got the welcomed chance to visit with old college buddies. We are even planning to do it monthly. As we reminisced I found myself so short of where I envisioned myself to be at this point in my life. And it hurts.

I feel small compared to my friends.

Like my friends, my days are jam packed. Just not with climbing the corporate ladder. Instead I’m signing Medicare cards and writing endless medication lists for swarming doctors. But when I’m not comparing myself to others, I can appreciate that my life does revolve around my two favorite things, my family and writing. I also have the time to enjoy life because I’m not tied down to a 9 to 5. This is the upside of things. The healthier perspective for me to have.

In the meantime, I’ve found the lesson! It’s the same lesson we learned in high school. Don’t compare yourself to others. Their situations are probably worlds away from yours. Plus, if we insist on comparing ourselves, then we most likely resort to selling ourselves short! I was about to.

That’s the ultimate short sale.

62

Denial, Hope, or Faith?

I recently finished my National Multiple Sclerosis blog entry. It will be available shortly. In the piece I encourage engagement among the land of the walking “well” even if it meant using assistive devices.

Just as I finished typing the last word of the entry a delivery from Medicare arrived! It was a scooter! Keep in mind, I was well aware of its impending arrival. In fact, I already own a bigger more robust power chair I used when my core strength was questionable at best. But, when I saw this scooter, my heart crumbled just a little bit. My first response was to resist it, because it seemed to mean I had given up on walking again. But, I hadn’t. It represented a conflict of interest for me.

I so want to walk again. I haven’t given up on it’s possibility. Is that denial, hope, or faith? I don’t know. I do know it hurts to even slightly give in to the concept of never walking again. My word, I’m only 36 years old! It’s been years since I have been able to walk unassisted, but it never gets any easier to accept. I mean I still mourn walking and I don’t think there is a statue of limitations where this is concerned. At the same time, I know things could be so much worst. Plus, I fear coming across as a hypocrite.

So, I was slowly able to turn things around by being grateful for what I can do. I remember when I didn’t even have enough strength to competently use a scooter! You would think I would see this as an improvement! NOPE, well not at first. But after recalling memories of my last exacerbation, I was able to usher in new found perspective. As corny as it may sound, though society deems me disabled this scooter will enable me! I once again can navigate amongst the land of the walking well! I can regain an inkling of my coveted independence! I can tackle those long aisles at Wal-Mart without having to wait 30 minutes for a free cart! I can go to the mall without Tom, my dear husband and caregiver. I will not have to be pushed everywhere in a wheelchair! That being said is reason enough to celebrate!

I plan to continue physical therapy, water aerobics, frequent our local gym, and use my walker inside the house. I plan to continue moving forward…just a little faster sometimes!

Once I was able to get my bearings and view this as a thruway to normalcy, I eagerly named my new scooter Thelma. Yes, from Thelma and Louise!

102

When Nature Calls

I came very close to not releasing this post, due to its inherent personal and humiliating nature. But at the last minute, I put my big girl panties on and decided just maybe someone could relate and perhaps even empathize.


This past week we noticed a sudden decline in my health. The things that I had been able to do for a while, I could no longer do! Plus, you remember that entire post about me transiently losing the use of my legs? Well it is still happening. At times I’ve been extremely fatigued while other times I am as normal as I can be.

Now I know what was causing such a dramatic change in my condition. Have you heard of urinary tract infections (UTI) or bladder infections? I don’t tend to experience the typical symptoms of a UTI, instead my MS symptoms just get worse. This means I get extremely fatigued and have more trouble ambulating. The bad part is I know how UTIs affect me, but I totally dropped the ball on this one! I failed to see it coming, even though I was having to use the bathroom four times an hour! Guys, I can barely walk so making it to the bathroom in a timely fashion sometimes just isn’t possible! There were accidents to say the least. I mean embarrassing life changing accidents, as I perceived it.

The one that finally sent me to the doctor occurred at my mother-in-law’s house!!!!! I was mortified! Someone was in the bathroom so I ended up letting lose in my sister-in-law room!! AGHHHHHHHH!

How did I get there? Well, originally I thought I could hold it until the bathroom was free. If I had known Tommy was the one in the bathroom I would have banged on the bathroom door like a mad woman. As it was I didn’t want to make a scene. Ha! So I came up with the bright idea to look for a towel that could possibly intercept the impending flood. I frantically side stepped into his sister’s room. I was cupping myself like I could catch the urine as it flowed like a river out of me! Standing there gripping the wall for balance while holding myself I thought I was going to die of pure shame!

I finally yelled for Tommy. Both him and his sister came running in the room. They both started cleaning up the foul smelling urine.

“I’m so sorry.” I whispered to his sister.
“I’m so sorry.” I managed between sobs.

She smiled and said, “Nicole, I have a 3 year old. This is nothing.” I was immediately relieved but somberly  guarded and replied with a half hearted smile. After Tommy had completely fumigated the bedroom and bathroom, he asked me if I wanted to go to the store. I said, “Sure I need to pick up a case of Depends!”

Later when we returned I called my doctor. My mood was slightly lifted as I now had protection and was headed in the right direction. His sister knocked on the door, peeped in again and reassured me everything was okay.

I naively like to think that my mother-in-law didn’t have a clue of what had just taken place!

Sometimes denial works.

30

More Than Coffee

I admit life can be tricky for the best (healthiest) of us. But, if you’re hauling around an extra burden named Multiple Sclerosis or any chronic condition the disease can divert the course of not only your life, but those closest to you as well.

Today was a good day. All my health aliments remained still and allowed me to live life! I have to start by saying that I am fortunate to have a mate that continues to look pass this horrific disease and love me despite it. He more than tolerates it. He unpretentiously accommodates it to fit into the daily routines of our marriage.

For a change of pace, I had coffee at a local shop with an old friend! Tommy made sure I was okay and left to tend to his own endeavors. I in turn, dressed myself, combed my hair, and put on make up for a change! As my friend was on her way up to the apartment, I got my walker and door keys and was ready to greet her. I didn’t even take my wheelchair out of the closet because I had pre-planned every step of the outing. My friend made sure the shop was handicap accessible (no stairs) and her truck had room for my walker. She arrived with hugs and smiles and then we left.

My friend, who also happens to have M.S., hadn’t been over to see me in a while simply because she’s been hauling around guilty feelings. We both have M.S. but hers is benign. It stays mostly dormant. She’s actually pregnant and doing quite well. I’m happy she’s doing so great. Yet, it wraps her in a blanket of guilt that her body is managing M.S. better than mine.

During our excursion she got to see that the core of Nicole had not been damaged. I’m still me. We had a great time laughing and just plain catching up. I may walk a little slower or not at all some day. We may have had to carefully plan our outings, but I’m still me.

In the end, the day turned out to be more than just an outing to get coffee.

Tommy got a break, I got to assert some independence, and my friend got to take off her guilt ridden blanket!

Three wins.

41

A Slight Diversion


December 28, 2011 4:00 p.m.

I think I’m physically weaker now than earlier in 2011. Mostly, because I haven’t been to physical therapy in a while. Did you catch the denial there? It’s sneaky. Thank goodness due to Medicare, that will change shortly! I’ll soon be active again.

I took a shower around 4 p.m. today. The time of day I usually bail out of any activity, but I didn’t want another day to pass “showerless”! I used my shower bench as usual, but this time after my shower my legs just wouldn’t step forward. They were stiff like logs or in medical terms, very spastic. My husband had to help me out of the tub and dry me off. I think I’ve mentioned this before, but this time was different. I couldn’t move my legs at all! He had to literally put me in the bed and tuck me in. How can I ever thank him enough?

How did I feel? Grateful. I wasn’t even tired. Legs just wouldn’t move. Strange feeling. Oddly enough, I’m lying in the bed now and calm. I’m typing this blog because I’m not surprised. After all, when this happened before within hours I was up and moving again… albeit slowly.

I’m betting on this being transient because that’s the way my M.S. works even though I have a more progressive case. I still have ups and downs similar to the common relapsing/remitting form of Multiple Sclerosis along with my  secondary-progressive Multiple Sclerosis symptoms.

Honestly though, I am silently devastated, but I’m viewing this as temporary, a slight diversion. As a matter of fact if I viewed more things as temporary, maybe I’d come out on top more often! Another reason I’m not losing my composure is due to the support I’ve received from my faithful readers. I’ve been blogging for only two years but you’ve given me a lifetime of support, encouragement, perspective, and opportunity. For that I thank you and wish you a Happy New Year of pleasing new normals!

As for me, I’m still in the bed. It’s 5:36 p.m. I’m motionless waist down, patiently waiting for my legs to get the message. Stay tuned.