MS Strength

I’m trying to keep a sense of humor about it, but yesterday I was in tears because I could not get to the library to volunteer. Only my second scheduled time there. I emailed the volunteer coordinator at the last minute— who was very understanding— after fruitlessly trying to get myself ready and into the car in 95 degree weather (full humidity.)

Since my latest relapse, I have been having intermittent symptoms. I was doing pretty well for a couple of years, with very few symptoms each day (except the annoying bladder/bowel issues.) I have developed more fatigue, or maybe I should say “lead limbs.” My mind usually feels awake, depending on if I get enough sleep. It’s my limbs that have been troubling me. They feel like cement sometimes, and my bad left leg and right hand trouble me the most. Not sure if it’s the hot weather, or the symptoms have decided to return and stay.

These unpredictable bouts have made it very hard for me to keep a regular schedule. Add the flu-like side effects of the Betaseron (still happening after 3 years of use), and each morning has become a crap shoot. When I recently worked at the library, I was so glad they gave me afternoon hours (1 – 5 pm.) Now, the 1pm hour of arrival is iffy.

I know volunteering is just that: voluntary. But being a former, conscientious worker makes it hard to become a “hopefully-I’ll-make-it-there-sometime-this-afternoon” volunteer. Just because we have MS does not make us feel any less responsible to commitments.

An issue I have to stop beating myself up about. Working on it.

During the past 2 years, I have worked from home for a company that exclusively hires people with disabilities.  I found out about this company through a vocational rehabilitation counselor.  The National Telecommuting Institute, located in Boston, Massachusetts, provides online opportunities for home-bound people.  Most of the job opportunities are customer service-related, including order entry and sales help.  If people are receiving disability benefits, NTI works with them to keep their earnings below the allowed maximum.

I have worked on the Internal Revenue Service seasonal program these past 2 years from October until the end of March.  The job entails locating and ordering IRS forms, packages, and publications for individual tax payers, companies, and tax professionals.  This is all accomplished through a high-speed internet connection and a phone line.  The benefits of the IRS program include higher wages (depending upon your county) and an hourly health benefit contribution.  The IRS jobs are mostly seasonal (they are currently recruiting for the upcoming tax season), but there are other telecommuting job listings.  This is a great way to make some extra money while working from the comfort of your own home.

Today I started volunteering again at the library. I will usually go in on Fridays, but the coordinator will be out this Friday, so today was the day. The volunteer coordinator told me about a new program I will be working on: to bring reading opportunities to kids who are waiting for foster care placement. There are 2 social service agencies in the area, and books will be brought to the facilities for the kids to choose from and take to their foster homes. They can choose 3 books and they also get bookmarks and small backpacks. There is a mascot who will also visit and talk with the kids. But first the books need to be processed.

My job today was to enter the titles, authors, and age groups for the books into the database. The coordinator showed me the many boxes of books waiting to be processed. I got 2 boxes done, then I strolled around the library as I waited for the rain to stop. So I now have a good, useful feeling and I anticipate going back.