Tuesday, September 13, 2011

Starting Over - Again

Back in 2007, due to intractable fatigue, I made the difficult decision to go on disability. I stopped working. As a Type A personality, this was a dramatic change for me, something I had difficulty dealing with. What was I going to do all day? What reason did I have to get up in the morning?

It took about a year and some life coaching to adjust to being a person on disability with no occupation. Eventually, I filled my time volunteering at church and with the multiple sclerosis society. I blogged, I wrote, I set up a Delaware area MS chat room, I started the Wheeler’s Wobblers MS walk fundraising team.

I answered the question “so what do you do all day?” by saying “I'm a support group leader, writer, fundraiser, and church volunteer.” Gosh, that all sounded very important. I began to feel relevant and like a useful member of society. I tried to pretend that I did not have a disabling illness.

All was going well until…

My fatigue got even worse this year. My pins and needles feelings and uncomfortable sensations in my hands and feet became really bad. Again I was faced with the decision to stop “working.” I decided that I had to resign from most volunteer jobs.

So now I'm back at the beginning. I am a person with no "occupation." I really took on too much this year, and I'm paying for it with increased physical disability.

So now what am I going to do all day? What reason will I have to get out of bed each day?  What is important to me? What deserves my attention and energy? How am I going to recover this time?

Stay tuned...



  1. I hear ya. I started over many times but never give up! I will stay tuned and you are in my prayers.

  2. A Type A myself, I know exactly what you are talking about. Indeed, I think I have gone into overdrive, post-disability, to compensate for the fatigue and other deficits; the essential difference being, I have a sofa I use throughout the day for five-minute naps that power the rest of my day. Until, well, the naps no longer work. But I credit my "driven" personality from keeping me from just curling up into a fetal position and giving up. Many are amazed at how well I still do. Well, I think my Type A ally is a huge factor in that. You'll find something to do. Of that I am sure.


  3. Whatever you decide, you will always be our friend and we will always love you and try to make your days a little brighter.

  4. Well, Joan, I hadn't read your blog until now. I read your original post where you tell me about YOU! Here you are now, at another crossroads, and I clearly see what your new beginning should be. It's as plain as the nose on your face. You have many gifts- passion, intelligence, honesty and curiosity. All of those combined with your love of writing - you should write a book about your personal experience with MS! There is always room for another perspective, another dynamic, another voice to help our need to live with our MS. Go for it. I know that you have quite a cheerleading section behind you . Just look at all of your postings on FB - everyone responds to you. There it is - more than my 2 cents!!:)

  5. Thanks everyone for those supportive notes, I really appreciate hearing from you.

    Cathy, I already wrote a book, which you can read on my blog starting at http://shortinthecord.blogspot.com/2007/05/short-in-cord-introduction.html