Archive for December, 2011

23

Only A Part

I’m worse now. There’s no denying this. Things are harder for me. Getting dress is exhausting. Applying make up is no longer a constant, it takes too much energy. We tend to analyze our life and take stock of our ourselves around New Years. I’ve been putting this off on purpose. I’m afraid I won’t measure up.

I always wonder what people think when they see me. Especially, if they haven’t seen me in a while. These days “a while” amounts to only weeks. My meetings have become strained. Are you shocked? Maybe afraid to approach me? It’s okay. Just remember, respectful greetings can be mutually beneficial allowing for both of us to get on the same page quickly. “Well, Nicole you’ve certainly changed since the last time I saw you!”

Here are more options for engaging with disabled people- How To Be With A Disable Person by Cathy Aten.

I know it really depends on what I exude myself. But the truth is MS is a part of who I am. I think that’s okay to admit. Afterall, it’s only a part. That’s the good news! There’s so much here. Parts I didn’t know existed. For instance, I never imagined I’d be this close to acceptance of this new normal. I never guessed I wouldn’t be mad anymore. Mad at whom you ask? The world. For a while I was upset with everything. MS has encroached on nearly every aspect of my life. I can’t pretend this doesn’t hurt.

That being said, how am I compared to 2010? Physically, I’m certainly weaker and slower. However, emotionally I’m stronger, more resilient and tenacious than ever. This year, I realized that Multiple Sclerosis wasn’t given to me to destroy me, but it has thrust me into a certain temporary physical experience, much different than before. Looking forward to 2012, my new normal is uncertain. The reality is next year I may worse or better, but the one thing I can bet on is it will be different.

Happy Holidays

39

Accepting Help

“Every time we let something go we open ourselves up to something better”-Lori Deschene

The past two days have been unusually rough, for no apparent reason. No new symptoms. No new arguments at home. I have been taking my psyche medications consistently. But I found myself tired and hiding in the bedroom. So, when my husband asked me if I wanted to go to the store I wiped my eyes and resounded with a whopping, “YES!” He gave me a strange look, but then got the wheelchair ready for our outing to Target!

Once in the store we went our separate ways. He did the majority of shopping for food but first pushed me to my area of interest: clothes. I successfully navigated through the isles. It’s tough shopping in a wheelchair. The clothing racks are awkward and tiresome to reach. Often, I can barely fit my wheelchair in between the displays. It makes me wonder if some stores are truly handicap accessible, like they boast. Still, I found a few items on clearance, which is always a plus! I even saw another lady shopping there in a wheelchair too! She had her little shopping basket on her lap. She was shopping without help. Just like me! For some reason seeing her made me feel proud of myself. I don’t know why.

Within a couple of minutes I had to use the restroom. Hmmm. Should I call my husband to help me? I really didn’t want to. I felt capable and in control so I wheeled myself to the ladies room alone. Now, the most complicated thing here for me is getting the restroom door open. It’s difficult because it’s so very heavy to me. My plan of attack is to push the door open with one extended leg. I can do it if need be, but it’s at a huge cost. It drains my energy for the rest of my shopping. So as I was struggling to open the door an employee walked up and offered assistance. It was obvious I needed help, but I actually had to think twice before I let her help me. Why is it so hard to accept help?

Well, I did accept her offer to open the door and she even returned to let me back out of the restroom!

I find that when I allow others to help me, it brings out the best in both of us. I also have to continuously let go of how I use to be. Including, what I use to be able to do for myself. I’m learning to balance my quest for independence while still receiving help from others. The two need not be exclusive.

Best of all, I saved my energy and I was able to continue shopping!

29

MS Pill (Part 2)

The presentation below illustrates my experience after my first dose of the MS pill, Gilenya. After a couple of doses, I had to change the time of day I take the pill from morning to night because it makes me extremely tired. As you can imagine this can be fairly problematic if you plan on getting anything done during the day! After reading my gilenya literature, I now know this little pill isn’t going to jump start me walking again. My expectations are more realistic.

I understand that truly as a patient with secondary progressive multiple sclerosis doctors really don’t know what the effects will amount to. I just don’t want to get worse. That’s why I continue to fight. That being said I’m not going to be quick to abandon this pill. Like George Bush, I will stay the course!

I’m not promoting Gilenya. I’m just telling my story.

Multiple Sclerosis (MS) Pill Gilenya-Part 2

34

Too Many To Count

A friend recently asked me, “What is Multiple Sclerosis?” I was honored that she wanted to know. I hope this helps.

This graphic basically explains the nature of how Multiple Sclerosis works. I don’t expound on this because there are numerous sites that do, but I can explain how it effects me. Before I go any further I just want to remind family and friends that although there is no cure for M.S., it is agreed upon that it is a disease of the brain and spinal cord. Although, this time honored theory is presently under fire! But for now just know that M.S. patients experience problems based on the location of these plaques or lesions. This is why everyone experiences MS differently. In fact you can have lesions on parts of the brain that you don’t use.

Above is an MRI scan, basically a picture of a brain. You can see the one on the left has no white spots (lesions) and the one on the right does have lesions. And that my dear is the culprit of Multiple Sclerosis! I don’t know when they came, but the bloody bastards appeared and slowly began to not only alter the physical geography of my brain, but also my life as well. It took me a while but I’m starting to appreciate how it affects my family and my husband. Since I have MS, my husband, mom, dad, and sister do too! In fact we all have to deal with my MS the best way we know how. It’s been a long time yet, I know I am still learning!

The doctors are quick to tell you about physical aspects of the disease. To name a few: fatigue, tingling, numbness, loss of balance, weakness, and blurred vision, but I felt less prepared to deal with the emotional roller coaster I would soon be on. Sometimes disability bring on denial, depression and dependence on others. Defense mechanisms can be cruel and insidious. Denial can masquerade as your best friend, but can be the very thing that causes a complete meltdown! It serves to separate me from what is.

The brain on the right has about 7 or 8 lesions. As I have said before the doctor told me I had “too-many-to-count”!!! I’ve told you that this illness is nibbling away at my idenity as I once knew it. When I’m at my lowest state of mind, I declare I am but a scaffold of what I use to be. But another blogger has challenged me to build a new life, a new identity, a new structure if you will, on the skeleton that I have now.

I can pursue my desires within the context of my limitations. I still think this is a horrible despicable disease that strikes those we love. But now I can finally have time to take a Spanish class. I can pursue my bliss. I can spend time with my family. I have a definitive boundary between what I can and cannot do, and that infuriates me! I haven’t made it to acceptance, but at this point, I just may be headed in the right direction.