Remission or a New Normal?

I saw my neurologist this morning for my routine check up. As far as she’s concerned there have been no new developments or exasterbations from the MS. I still have tingling and roaming numbness through out my body, it’s sometimes like the nerves in my skin struggle sometimes to keep up with the touch sensations, but it's nothing that overly concerns her.

As she’s asking me about how I’m doing with this or that, and I have to think back over the past couple of months, I’ve realized that more and more of the issues I’ve complained about has drifted to the background. This is good... I’m at least not focusing entirely on my symptoms and they’ve lessened significantly. However, I still do not feel the way I used to feel before this all happened. Which leads me to the question...

Is remission just a new normal?

When I first was diagnosed with MS, the idea of remission was a promise of normalcy; that my body would go back to the way it had been before all of this happened. However, with my doctor immensely pleased by my ‘progress’ and the lack of new symptoms I have to wonder if this is what they would consider to be remission. If so, then I feel gipped because I do not remotely feel anything like I did a year ago.

Honestly, I can barely remember what it felt like to be “normal”, to not have my body go through weird and random lapses in feeling, or feel exhausted just walking across a parking lot in 90º weather. It’s almost impossible not to think about MS every time I take my shot or my pills because thats the reason why I take them, but it’s not a thought that’s on my mind all of the time. 

Slowly but surely, I’m adjusting to the new me, and I can’t help but think that remission is just an acceptance of what you can’t control and change. You stop fighting and railing against it, and it starts to slip to the back of your mind more and more. While you still don’t feel like you used to before all of it happened, you’re getting used to the new ways your body feels.

Is that how you live with MS? By quietly accepting every failing, every unwanted feeling, every unwanted limitation, and every dose of medication you take? 

I suppose it makes sense. It’s useless looking back to the past and how I used to feel and how I used to live. That person is gone, she doesn’t exist anymore. Even if all of the symptoms did go away, as the idea of remission promises, I will never be who I was one year ago today.

Welcome to the New Normal. At least what constitutes normal today. Tomorrow?


Well... That's a horse of a different color.

To Tell or Not to Tell

To tell or not to tell, that is the question.

As I am in the process of finding a job, I have to think about how MS is going to fit into that part of my life. The question if disclosure is a big question when it comes to if and when I tell my new employers and how that will affect my on the job.

A part of me is inclined to be honest up front because it feels almost dishonest if I’m not. MS can have an impact on my job performance. There could be days where I am so fatigued I could barely get out of bed, I have more doctor appointments that an average person, and there is the potential for other issues. Not saying anything means that I have to be vague about absences, sick days, leaving early, and that could reflect negatively on my work ethic. I could wait to get hired and then say something, but it feels like some sort of bait and switch, the company hired me with one expectation and then learns that there may be limitations on my end. Once hired, I could not be let go because I had MS so a company could feel stuck.

However...

Being upfront can definitely hurt me ever getting a job. I still cannot be discriminated against, but it is much easier for a company to find other reasons not to hire me even if I were more than qualified.

Things are getting better MS wise, and it’s getting easier to almost forget that it’s there. The chances are, there would be no issues MS wise when I start working again, but I’m anxious. The only job I had since my diagnosis was with the school and it ended with me in the hospital. That’s not a positive experience to draw from, and I’m worried that it will happen again.

So, to tell or not to tell... that is the question.