My disability story

Devin shared his disability story so I thought I would share mine here.

I was diagnosed in November 2003. For 5 months before that, I went through the diagnosis process, working full time, not missing much work. In October I had a negative spinal tap so I thought I did not have MS until a new symptom crept in at the end of the month. My symptoms were all sensory, loss of taste, and feeling, twitching in my face. So when I was diagnosed, I thought I would continue working for the foreseeable future.

Once I was diagnosed, I realized how fatigued I was. I had thought it was normal to start to get fatigued in your late 40s! I remember talking to someone my age whose wife was expecting a baby and saying I didn’t know how he was going to keep up with a new baby. He looked at me kind of strange.

In May 2005, I had a definite attack that affected my walking and talking. My husband ended up in the hospital that month with pneumonia because he was counting on me to be responsible for getting his inhalers, but I was too tired. I didn’t realize how poorly I was functioning. I was at work when I got the call that he was in the hospital. I was so fatigued that I got angry at him because I could not deal with my fatigue. I had steroids for my attack and tried to go back to work.

In late June of that year we took a 2 week vacation on a Windjammer boat in Maine and a week in Nova Scotia. I rested a lot and recovered some of my energy. I was anxious the whole time about returning to work. When I got back to work, my employer suggested I work part time ‘temporarily’ The temporary part became permanent for the next 2 ½ years. Fortunately, I had long term disability insurance through my employer, so I applied for that and got a settlement for the difference between full and part time work.
In January 2007, I was doing ok, working part time and thought that I could do this. But then I had another major attack that affected my walking, my hand and cognition. I got my steroids and tried to return to work. But I remember the day I decided that I couldn’t do it anymore. That morning, I had a dentist appointment and was supposed to work in the afternoon at 1. I woke up too fatigued to shower and rushed to the dentist, but I had gotten the time wrong, so when I got there, they couldn’t take me. I got in my car and burst into tears. At 1:00, I arrived at work, dirty and upset. My supervisor asked me why I had not done something that I was supposed to do the day before. I realized I just could not do it anymore. I was in pain and needed physical therapy but with working, I couldn’t do it all. I thought I would be back but it never happened.

As for getting on SSDI, I did apply myself, with no lawyer, but I was still in ‘work mode’ I had gathered lots of info for the long-term application 2 years before that so I had a well documented case. My neuro knew what to say. I got it on the first try.