Now the real challenge starts. So far I have had so many distractions in my life that I have never really been alone with my MS. I always had other things to keep me busy or keep my mind off my troubles. Even when I was in the hospital, my focus was on getting better. I have worked through my entire diagnosis and this is the first time I will not have a job since before college. So forgive me if I resort to what I know.
After only a week back in New Orleans I posted my resume on some job websites. I was bragging to my friends about having a great week. I told everybody that would listen I was feeling fantastic and I haven’t felt this good in months. I believed my “spell” had past and old mister MS had gone back to sleep. I was saying all of this from a wheelchair. I was stuck in denial.
Tommy set up a full-length mirror that I passed everyday. One day while walking by the mirror I stopped and looked at myself. I mean I really took a good look. As I stared, I was disappointed that I didn’t see the Nicole I use to know, the one that I still pictured myself as. I saw the new Nicole. The one that couldn’t stand up straight and used a walker to get around the house.
I thought, “Look at me. Who in their right mind would hire me?”
I slowly slid to my knees and began to do what I do best. I cried.
But this time it was different. I wasn’t sad and not really sure why I was crying. Yes, I know I was missing the old me but the reality is, that person is gone and will never come back and I was ok with that. How I came to that conclusion I may never know but it was a wonderful enlightening moment. I think that may have been the first time I really faced my MS. And guess what. I won!
Despite having won that battle I knew there would be many more and I had to prepare myself. People always tell me that I’m so strong. I am always smiling and seem to be having a good time. That may be true sometimes but there are many times that I feel melancholy and my whole day, sometimes my entire week, is controlled by sadness. In order to keep my sanity I found an excellent psychiatrist and began some relaxing pastimes such as laughter yoga, meditation, and blogging. I also created some coping mechanisms.
So what do I do? I mean, other than cry.
Despite the challenges that MS brings I don’t just sit in my bedroom letting my life pass me by. Yes, MS is physically, mentally and emotionally exhausting but I learn as much as I can about the disease and my body so I can understand my weakness and strengths.
Overall, I try to stay positive. Most people I meet with MS seem to share the same optimistic attitude. Yes, this is an enormous barrier that was sent my way without rhyme or reason, but I’m determined to get on with my life.
I try to stay positive because getting angry doesn’t help. It doesn’t solve my problems and it eats up my limited energy that I could use doing something more constructive. There are periods of times when I just can’t do what I want to do so I cautiously plan my days so I am able to complete most of my tasks.
I try to convince myself that others are worse off than me even when it’s probably not the case. When I go to the doctor’s office I see people who appear perfectly find. I usually sit in my wheelchair and try to figure out what’s wrong with them. You can clearly see what my medical problems are but these people could have all types of unseen issues. I know that sounds crazy but it works for me sometimes.
I am also working on ways to cope with my feelings. At times I suppress my emotions not to bother others. No one wants to be around someone who is always complaining. At least I know I don’t. To hide my complaining, sometimes I laugh when I want to cry. This results in people not taking me seriously. Most just see a happy-go-lucky person. I can imagine them saying, “She looks a mess but she was so nonchalant, everything must be ok.”
Guess what, everything is not ok. I shouldn’t be upset with them because I am the one that gave them that impression of me. But I just don’t know how to tell folks I am not ok, without scaring them away. I wish people could read my mind and know when I’m going through adversity and not think my plight is a joke. When this happens I usually begin to feel sorry for myself.
To help me stay on a path of positive self-affirmation, I like to recite this adage: God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.
I took that from Alcohol Anonymous (AA) and it seems to work in my daily life. Hope they don’t mine.
Though easy to cry, I think I’ve always been a strong person. But lately, I have been feeling weaker than most. To counter that, I try to get concerns off my chest and employ everything I have learned. The four main things I have learned through this entire journey are:
1. The control I speak of losing…no one has. Lives can change in an instant for anyone with or without MS. On a daily basis, most of us lose sight of this. I am just more acutely aware of the possibility of change. In fact, this life-changing situation is merely the most recent pot hole.
2. Family is everything. I could not have survived this without their support.
3. My life is not as much about this life changing disease as much as my response to it. Don’t let me confuse you. This is something I continually have to remind myself.
4. I have the best husband in the entire universe!
WE ARE ACCEPTING, ADAPTING AND MOVING FORWARD, TOGETHER TOWARD NEW NORMALS
My New Normals
(My story was written using voice recognition software so forgive me for any mistakes.)