Archive for September, 2012


Forgiving MS

I’d first just like to remit a disclaimer here that I’m not endorsing anything or anyone. Although, I wouldn’t be opposed to someone throwing money my way!

I wonder if there is an element of forgiveness or un-forgiveness all wrapped up in my pursuit with MS? I try to write away these emotions. But still, often I’m a ball of negativity. Pick your poison: anger, jealousy, weariness, etc. I only mention this because I’m presently reading Let it Go by T.D. Jakes. I’m pretty sure this book wasn’t intended for my medical dilemmas but the more I read the more I recognize myself in between the lines. I mean I’m fairly transparent about my ill will toward this monstrous disease but it’s those sentiments that Jakes speaks of in this book that I need to work on. Granted, I’m less than half way finished, but I’m getting the idea there is something here I can learn from yet another unlikely source. T.D. Jakes!

The complicated thing is that there’s no one person that has committed an offense against me. It’s a disease. It’s a disease that has stolen many of my faculties. I use my hate for MS to help me endure the losses I am living with. Jakes is asking us to look at the bigger picture and recognize that what may have once allowed [me] to survive both holds [me] back now and threatens [my] existence. Like I use to be able to safely drive and cook, but now both activities done by me alone threaten all involved. The things I once did as second nature endanger my existence in this new normal because those things are no longer second nature. They are hard, and that makes me livid!

I think he’s saying not to look at the immediate offense (my fatigue, lack of walking and driving). But instead widen the picture to capture my supportive family and friends and that includes forgiveness of what is due to Multiple Sclerosis. I know this is confusing. I barely got it myself. I’m still marinating on the idea. But I just got a feeling it may be worthwhile to finish this read. Because right now forgiving MS is impossible.


So I have to be honest here. A few weeks have passed and I still haven’t finished the book much less forgiven MS. It’s probably a good read just not for me. I can accept MS and appreciate all the people it has brought my way, but forgive it? That’s too much to ask!!

Check out some books that have helped me deal with MS.

My New Normals Book List


One Moment At A Time

Not to long after I was diagnosed with MS, my 70ish year old neurologist confidently told me that he thought multiple sclerosis would not be cured in his lifetime but for sure it would be in mine. Quite comforting at the time, but now the clock is ticking very loudly. Each new symptom reminds me just how vulnerable I am. I was in my early 20’s at the time he made that statement. Now I’m knocking on 40! My cure confidence is slowly fading away. First of all, I never thought I’d get this disabled. After all, a cure was just around the corner. Right?

I don’t see that neurologist anymore and I wonder how he’s doing. I wonder if he’s still alive. I wonder if he knew how great I thought he was. I wonder what he would think if he saw me now. I’m sure he knows that a chronically progressive disease does just that…progress. The best things I can do are to dig deep into myself, find peace and adapt.

To tell you the truth I don’t even wish for a cure anymore. It takes too much out of me. I rather just try to make it through the day. It’s much easier for me to take it one day at a time. On rough days it downsizes to one moment at a time.


Worst Job Ever

Silly MS has me feeling tired and looking drunk today. I appear as if I may fall on my face at any moment. The room is spinning and I haven’t had a drink. Look out! I may throw up at any minute. What a great day!

This is a continuation of exhaustion and bizarre symptoms I have experienced over the past week. Some of my habitual problems include vertigo, balance issues and weariness. Lately my symptoms are like a plane without a pilot. I have no control. My circumstance is out of my hands. Constrained by the sadistic beast who is Multiple Sclerosis. Fatigue, muscle spasms, cognitive impairment, bladder and bowel difficulties have all become part of my daily life not just occasional annoyances. It feels like I am slowly deteriorating.

My latest symptom is the feeling of choking. I always choke when I eat and drink but lately it seems to have intensified. Yesterday morning while I was eating an orange it got stuck in my throat and I began struggling for air. I started to feel like I was suffocating. This is the worst I have ever choked and it scared me half to death. The most awful part is I now get the feeling even when I am not eating. Just a normal swallow will set it off.

While the choking scares me, the fatigue irritates me. I’m always extremely weary and I know that getting up and doing something would probably make me feel better, but I can’t. I wake up feeling exhausted and by the afternoon it takes serious effort just to sit up and watch TV. I could sleep for days on end if my life would allow.

Sometimes I feel like having MS is a full time 24 hours a day job with crummy benefits and no pay.

I just need to find out where do I turn in my resignation and live without it.


Like A Hurricane

A long time ago I was forced to let go of the idea of what my life should look like. I’m learning to forgive myself for what I can no longer safely do alone.

We had to recently evacuate New Orleans due to the threat of Hurricane Isacc. For those that don’t know, New Orleans is below sea level. Which means that hurricane strength winds and flooding can nearly demolish the city in minutes! This particular hurricane posed a unique obstacle in that it was moving very slowly across the state of Louisiana. The same levees that failed to secure New Orleans for hurricane Katrina a few years ago, held up this time, but the suburbs instead took the brunt of the storm leaving many homeless yet again. The subsequent impromptu evacuation shook my new fragile foundation.

All this to say that, leaving my modest but very accommodating surroundings was necessary, but hard to say the least. A few days after, the meat of the storm had passed; I actually left on a trip with my family (mother, father and sister) as previously planned. At first I thought it would be a good idea to give Tommy, my husband, a break from his routine responsibilities caring for me. Later, after I remembered how cumbersome even the simplest activities are for me, I was humbled but thankful for my family.

For example, my dad had to help me to the bathroom. My mother prepared my meals for her 37 year old child. My younger sister literally carried me up the stairs to her apartment. She helped me in and out of the tub. On my part, I just had to let go of who I use to be once more and accept help. A little thing that continues to forge new paths for me. I’m changing right before my eyes.

This supposed big sister has transformed into someone unimaginably different. Hurricanes tend to do that too.