Almost Through The Holidays

I like a good challenge and I think it's important with this disease to always set goals/challenges and celebrate the small successes. However, I'm taking a moment to reflect and it occurs to me that often my goals involve pleasing others with little benefit to me.

Did I really need to host Christmas dinner? Why didn't I pawn that responsibility to my sister or my mother? Sure, I had fun, but really, it took a lot of energy - valuable energy I should conserve for survival now. I guess I'm still learning to say no. Funny though, my NMO sisters (that's what I'm calling C and E now) did the same thing and hosted parties too. And while I was drafting this blog, C actually wrote the same thing here: http://www.theblindcook.com/.

I found the holidays very testing this year for several reasons. Again, dealing with my alcohol consumption and constantly saying no at gatherings is very exhausting. Hosting dinner for my family seems like a fun idea but I spent an entire day preparing by myself and by the main event I was feeling drained and wishing everyone would go home. The Christmas tax, which is what I call the excessive spending that is required over the season, also keeps me up at night. I'm still recovering from the last year not making as much as I did before.

Throughout all this I start to panic a lot on the inside - all while putting on a brave face. I hate that I do rely on my support network to get through busy times like this. I feel a sense of insecurity and embarrassment that I need those close to me. It has become my reality and I am humbled by it. Dec. 30th was the 1 year anniversary that marked the loss of Michelle Lang, another Canadian journalist who was posted in Afghanistan. My husband has been there twice on a similar assignment so thinking of Michelle and the 4 soldiers who died alongside her rips at my soul. I barely made it through the holidays without him (he worked a lot) so the thought of him being gone that long on another assignment, to somewhere so dangerous, and maybe never coming home - it haunts me. I can't even take comfort that our troops have made an impact and I can't help but think that the exact civilians she was trying to reach out to aided in the attack on her convoy.

I feel like I live in constant terror - losing him, losing me, losing the family we have been working so hard to build together. Maybe my resolution should be to fight the fear.

Dear Alcohol, It's Not You...It's Me.

BNMO,or Before NeuroMyelitisOptica, I've been known to enjoy a drink or two or three. It was common knowledge that apple martinis are my kryptonite. I'm also a fan of a good glass of chardonnay or even a cran and vodka. At least in my experience, recruitment requires a certain level of networking ability - often attending a function and schmoozing with alcohol. Unfortunately, that trickled into my personal life and I spend my weekends with the movers and shakers and the martinis. What I'm saying is that in every social and professional setting, I'm now offered an alcoholic beverage.

And it was glorious.

I've always said that one of the biggest challenges with NMO is that it's hard to recognize how difficult every day is when you look great on the outside. Now that I'm slowly losing my steroid weight, everyone keeps telling me that they are glad to see I'm feeling better...except that I'm not so I just say thank you and move on. But now, looking better = feeling better to the outside world = push a drink on to me. So lately, I've given it a try but enjoying a good drink just isn't the same. With all the meds coursing through my veins, they just don't mix well with booze. It takes me days to recover and I'm up all night feeling ill. Yet, I'm also so very tired of explaining to people that booze doesn't work and that leads to explaining how I feel, which leads to sad faces and shock.

Last week I tried saying, "I quit drinking" every time I was offered something (and trust me, it was often especially during the holiday season). Then I had people question if I was pregnant.

Changing my bad habits or essentially, a lifestyle change, may be more difficult than I thought.

Temper Tantrums Happen

I kinda see my energy and ability like a speedometer. My body is an engine where there's a thin line between working really hard and working too hard. Go over that line and suddenly my symptoms are unbearable, I find myself on the couch and I cry. Other times I'm conscious of that line and I probably don't work hard enough so nothing gets done.

I know I've been pushing that line a little close for a while. The holidays are really busy, it's the end of the year so I'm trying to close as much business as possible and it suddenly got really cold outside. I find that if I don't admit how hard things are, it starts to build internally. Yesterday the valve on my engine burst and my husband and I got into an ugly fight about all the things that have really been bothering me. I'm truly sorry that we did but there were things that needed to be said. I know it's hard on him too but I do expect that he be the one person who really understands me and can see when I'm dangerously close to going over that line. He should also be that one person who can help me rebuild my engine if I accidently do go over the line.

Sometimes this disease makes you feel really lonely. Just because I look better doesn't mean I feel better. In fact, I'll never feel better again. So, everytime someone says I look great and they're glad to see I'm feeling better, I have to force a fake smile and says thanks. Well, thanks for nothing. Thanks for pointing out that I'm a great pretender now. Thanks for reminding me that I looked horrible before. One of the hardest things about this disease is that no one really knows what it feels like inside and how we struggle every second of the day. Eventually this builds up and yes, you snap.

So I'm here to tell you that temper tantrums are ok.