Monday, November 17, 2008

Revenge of the Blog

I knew that this would happen. I'm actually surprised that it lasted this long. I'm referring to this blog. Like so many other of my post-employment projects, I've lost interest in writing regularly. I have many reasons and excuses for this. The biggest one is that my life is boring and monotonous.

I am reminded of this as I have been filling out disability paperwork. I have had to answer questions such as "describe your daily activities" and "how does your condition prevent you from caring for yourself." A long time ago, I attended a workshop on applying for disability and they said that you should fill out your paperwork describing your worst day. Even my best day doesn't seem so great anymore. It's pretty depressing to see things laid out that way. I wrote down everything I did from the time I woke up until the time I went to bed. I also included everything that required assistance such as bathing, dressing, grooming and toileting. Basically, I'm useless and helpless. What a combination!

At my most recent neurologist appointment, my doctor asked me about my frame of mind. Without hesitation I told him that I was really getting tired of having MS. This is the guy who diagnosed me so he knows how long we've been playing this game. Perhaps he's gotten tired of it too? After all, we treated me aggressively from the very beginning but this disease keeps fighting back. One project that I have not abandoned is keeping up with the current research. Amazing breakthroughs are being made in MS treatment and I need to believe that there will be something new and effective out there for me.

I also guess that I need to carry on with this blog because I've discovered that some people are actually reading it. My message is simple and direct; MS sucks, it's hard to explain, life goes on. If that's helpful to people then perhaps I'm not that useless after all.

3 comments:

emcjic said...

Please carry on with your blog, and don't let the mountains of paperwork drag you down.

LISA EMRICH said...

Yes, Lydia. A few people really do read your blog. See - there's at least two of us.

MS Sucks!!! I'm sorry. Please keep writing when you feel like it. You never know who might stumble across this and think "wow I feel exactly like that most days."

Hope you feel a little better soon.

Chekoala said...

Me three (although I only just found it).

It takes extraordinary resilience dealing with the 'jumping through hoops' of paperwork, appointments and navigating the labyrinths of the medical/insurance/government system. That makes you extra-ordinary - not ordinary by a long shot. Keep up the fine work.

(http://multiplesclerosissucks.com/ often has some bright spots on the subject)

cheers muchly