Twisted Sister

It was a crazy name for a crazed looking band.

But Twisted Sister could be a fitting name for me too.

“Sit up straight”, one said.  “Focus on awareness” another one urged.  “It will make a difference long-term”, he explained.  “Concentrate”, she encouraged.   Physical therapists are trained to help people recover from an accident or surgery.  Their job is to fix the broken in the safest and most effective way.  They like to see results.  But what about someone like me who offers no improvement in return for their investment?  They think or pretend that it’s possible for me to realign my crooked body with some exercise and a lot of sheer self-will.  I’ve done what I can, but there are some parts of me that simply don’t work and willpower doesn’t change that.  I have made it a goal to follow their suggestions.   I do my best to exercise and retain what I presently have, but the most I can offer anyone is very temporary stability and my gratefulness for their effort.  Overall, I end up feeling like I am a disappointment for those who try to help me.

That doesn’t mean appointments are not helpful.  I’m grateful that our insurance covers physical therapists, and the sessions have benefitted me.  I have gained some effective tools for maintaining and even strengthening some areas.   But the appointments are both physically and emotionally exhausting for me.  It is likely the time when I am most faced with the dramatic impact that MS has had on me and how changes have limited me. And after appointments I grieve, which is a necessary but time consuming process.   I rest there only as long as I must and then move on again, focusing on the suggestions I was given.

My legs flop to the left and my upper body tends to lean right, leaving me anything but straight.  I am fighting an uphill battle, or what I call climbing downhill (the name of this blog).  During the day I exercise and align my body to the extent it allows me to. At night, when I settle in to sleep, I actively remember all the tips given to me.  Regardless of my effort, when I wake up, my body has returned to it’s natural state, its default posture.  There’s not much I can do to change that.  I use the parts of me that work to reposition myself as best I can.

MS has randomly and slowly taken parts of me, leaving me a twisted mess.  Untangling becomes more and more difficult.  I know the future will present more challenges.  I must continue to find new and creative ways of doing things.  Sometimes suggestions from physical therapists help.  Sometimes I must find my own solutions or resign myself to another limitation.

Offering some relief are braces.  One physical therapist tried a wide back brace on my torso to see if it would make a difference.  It actually seemed like it had a straightening affect and afforded me some stability.  Having it on felt good.  A visit to e-bay when we got home led my own brace to my door within a week.

When I looked at it, I wondered if something like it might be a possibility for holding my legs together because my weaker left leg pulls my right leg with it and they both flop to my left side.  Another trip to e-bay and another brace arrived soon after.

Now with a band holding my legs together, they are much better behaved and it delivers relief from some pain.

Twisted and tangled is what I have become, but God bless the man who invented Velcro – it’s holding me together for now!