I’m back. Really.

Wow, I have been gone awhile.  My last entry was while I was still in the hospital.  Needless to say, I overestimated my energy level.  Like I’m the only person with MS who’s ever done that.

So, here’s where we left off…after spending a week in the hospital for a week thanks to a bout of viral bronchitis that triggered a major MS attack, I had moved from the main hospital to the in-patient rehab center.  I stayed there for another 8 days after my last post. Instead of going to my job, I was in the rehab gym for 3 hours a day for occupational and physical therapy.  I was often seen in the hallways doing my “homework”, using only my feet to navigate my wheelchair from the rehab gym to my room.  I had the perfect roommate – lovely person with a terrific family who shared my desire to get the hell of that place as soon as possible.  We were quite popular with our therapists.  We put everything into our therapy sessions, because even though we were fond of our therapists and nurses, we wanted to get home to our families as fast as possible.  Sitting around feeling sorry for ourselves would just make our stay longer.

So I got out of the hospital the day before Mother’s Day (perfect!) and spent the next week at home.  The next week I worked half-days, and that was plenty to wear me out.  Then it was back to work full-time and into outpatient occupational and physical therapy.  I went to OT and PT twice a week until the end of July, when I graduated from OT.  Until last week, I was doing PT twice a week, and I’ll still have an appointment once a week for 6 weeks.

So where am I now?  When I got my last botox shot, the doctor asked me how I was feeling compared to 6 months ago – 80%?  90%?  I immediately said over 100.  I’m definitely better now than I was before I went in the hospital.  The most obvious sign to other people?  My ankle foot orthotic has been gathering dust in my closet for weeks.  Words cannot describe how delighted I am.  I got to wear sandals this summer!

I no longer live in a constant state of fear.  I filled out a questionnaire when I started outpatient PT.  When I had to say what were my fears, I ran out of space because there were so many to list.  A lot of them are gone now.  I used to over-analyze ever step I took.  I knew I wasn’t walking properly and tweaked every step to the extent that I had no idea whether I was making things better or worse.  Now I know what to do, can recognize when I’m not doing it right and know what to do to fix it.  My PT laughs that I’ve gotten taller, because I’m not hunching over my rolling walker the way I used to.

Now my focus is building my new normal. I know how much better I feel now than I did before, and I never want to go back to that.  But getting less and less medical and therapeutic supervision means I have to take the lead in managing my own health.  I’ve got to take control and do what it takes to keep improving.

I just know I can’t do it alone.