A couple of days ago I posted about the last 22 years ..from health to disability to relative health again.
Today, I sat in Physical Therapy and a new patient came in. The physical therapist told them “In a few minutes you’ll be using my name as a cuss word.” I had to smile as I remembered my very first day in Physical therapy years ago … I was told the very same thing.
I guess because it’s been 19 years, today, since thymectomy, and diagnosis of lupus’ anniversary was yesterday, it’s left me rather reflective of how much life changed and how much it changed again …
When I walked into physical therapy, I did so wearing a pair of AFO’s. The AFO’s and I had a very odd relationship. They enabled me to walk without falling, to reduce pain levels in feet, knees, hips and lower back. They were also heavy enough that it meant being able to do half of what I could do without them on.
As time went on, my PT became increasingly concerned and ordered me a pair of KAFO’s
(AFO’s are knee ankle orthotics, the white braces you see occassionally that go from foot to just below knee, they keep the foot/ankle and calf muscle stable. KAFO’s are Knee/Ankle/Foot Orthotics and go clear up the leg, almost to the hip and stabilize the thigh, knee, calf muscle, ankle and foot) They were heavier than the AFO’s and my movement was limited even more. As bad as pain is to deal with, the fatigue was more unbearable. (I was also having to deal with all of my sons developmental/physical/speech/occupational therapy at the time .. not to mention his chaotic behavior due to autism)
So, my PT went against the grain and worked to strengthen my muscles, theoretically, at the time, considered not possible for a myasthenic. Thankfully … we were right ‘they’ were wrong. I’ll never forget 5 years after we started our rather aggressive program reading in a neurology magazine in my neuro’s waiting room that the recommendations were changing ..building muscle did not, in fact, worsen MG and in fact, decreased arthritis complications. My PT and I felt rather smug 🙂
Time went by and I kept up as much exercise as I could, in and out of PT for injuries or surgeries. Spending a year in PT working on balance after dislocating a knee cap that required surgery to repair … and I thought I’d gone as far as i could (but had no intention of stopping)
Then came yoga and my life will never be the same. In additon to life changing moments of realizations and clarity and some healing of the heart … came increased strength and endurance. The most remarkable is the pain relief. Not just taking the edge off as I was used to PT or exercise doing, but ABSOLUTE pain relief. Taking my pain medication intake from 180 pills every 8 weeks to 1 day short of a year to take those 180 pills, and if I’d not injured my shoulder (and had to put yoga on hold for 3 weeks!) I’d still have some!
But I can loose my balance without falling (as long as kitty cats stay out from under me!) no more standing and dropping like a rock without ever having moved! No more tripping and landing face first. I HAVE fallen in the last year .. slipped on a piece of paper on the floor, slipped on a wet kitchen floor and my cats have taken me out at least twice .. but EVERY fall has had a cause .. not just a muscle give away or not being able to catch my balance!
I sat there today and thought about those AFO’s and watched as they had someone walking up and down stairs and I remembered being taught, like a child, how to ‘safely’ walk up and down stairs. Something no one thinks they’ll be learning at 35 years old! I can remember having to sit at the top of 4 stairs because I’d become too fatigued after just going up those 4 to come back down. I remember the panic and pain and frustration welling up and the PT seeing it in my eyes and telling me that it’s not my fault .. it’s not laziness and it’s not anything that I did .. it just happened. And I thought back to the last day of school .. I was going to be late if I didn’t hurry .. and I had to choose between stairs and being late. I’m never late .. ever. I chose the stairs, knowing that I fatigue on them .. but still, I’d rather be fatigued (and maybe short of breath) than be late. So, up I went … and just as fast as I’d walked from my car (no longer in a handicapped space, I park at the end of the parking lot now days!) And I went up and PASSED a classmate (who asked me where the fire was)
My PT came over to me as I was thinking of the dichotomy of my 2 experiences … and she asked me to stand and I did. I had a book in one hand and glasses in the other and I realized, I’m not longer ‘standing with my arms’. I’m standing up by using my stomach and leg muscles … something that I never thought I’d do again. I came home and sat on my couch and tried it again .. and again … I can stand without using my arms to brace me or push me up (as I’ve done for the better part of 22 years!) 16 times, the 17th time, my arm reflexively went to my arm of my couch and the thigh of my right leg.
As I did my exercises I was remembering all the PT that I went through, and some OT, trying to teach me safer and more effective ways of using my muscles and wondered .. when did I go back to the normal way of doing things .. and how remarkable the human body is that with more than 20 years of doing things one way .. it is so easily and unconsciously done away with when no longer needed and how feeling normal feels NORMAL and when I go into a flare or wear myself out and feel the symptoms of the 2 diseases .. how ABnormal that feels … you’d think that you’d adjust to feeling abnormal … but you don’t .. it always feels wrong.
I imagine that’s protective .. to keep one from giving up and giving into a disease.
I’ve come so far … and I wonder how far I have to go … everytime I think I’ve reached a mountain top I look up and realize I’m just at a camping station .. the top of the mountain is soooo far up there .. and I will reach the top.