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Sunday, April 24, 2016

Transverse Myelitis and Confidence

In my constant search for improvement in my recovery, I am finding it may be a question of confidence in my ability, rather than the ability itself, that has been slowing my progress. I guess if you walk funny like I do, you avoid walking in public places.
But it is more than that. I continue to be unsteady on my feet when walking. I am also a visually impaired in my right eye. So if I cannot see a path through a crowd, I tend to wait until can.  That makes me tentative, and I miss opportunities. Then I get cross with myself (particularly if we are on a tight schedule), and I am sure that does not help. So I try to stay positive and believe that the crowd will open up to let me through. I have been using a stick for a couple of years, and this does act as a signal for others to avoid me (but then not everyone is setting out to be aware of cripples; they just want to get on with their own lives).
I find that I overplan a journey, visualising each step of the process. So we went to the ballet to see ‘Midsummer Night’s Dream’ the other week, in honour of Jan’s birthday and our wedding anniversary. I drove into Brisbane from home, and was pleased that I had remembered the route, and had made enough time to get into the city and find a car park. I had ‘rested’ for a couple of days to ensure I had the energy. So I was able to climb stairs from the underground park to the forecourt, and get to the closest restaurant. Sitting eating dinner provided a rest, and refreshed me to do the walk along the concourse to the theatre. I felt really confident. Then I was thrown. Jan had trundled off to get the tickets, but by chance had come across a wheelchair and attendant who agreed to take me to the theatre. I was really cross, which was stupid. It was a great idea, and very caring, and was conserving energy etc. But I had planned it all carefully, thought I could do it, and just that small incident threw me into a spin, and it took time to swallow my pride, and just get on with it. Jan was just being kind and sensible. But I had to work at stopping being a prick. And for a while I felt my loss of confidence.
Anyway, the ballet was fabulous, the seats had extra leg room (recommended when I ordered the tickets), and once I was over myself, the evening went back to being a success (give or take a couple of hiccups).
As I have noted in a couple of recent posts, I have been gradually building up my walking, and also the frequency (up to 3 times a week) and length of getting on the indoor bike (from 20-25 mins).
So yesterday we went to the wedding of a nephew and new niece. Great family gathering! Again, I planned out the route and the timing. I had been to the toilet 24 hours before, so that problem was fixed (and fixed in my mind). I actually restricted my fluids the night before and in the morning in case there was no toilet at the church. No problems. I drove down the motorway, and we used the ‘Navlady’ to find the church, arriving with 25 minutes to spare. All good. Except for the fact I had forgotten my stick. Ah well, walk funny, go slowly, get on with it.
Went to the toilet, just as part of my routine, but did not really need to go. The church was built on a hillside, so there were two flights of steps to get in…. Just get on with it… slowly. Got a nice rest during the ceremony and during photography, and then we piled into cars and drove to the reception in a great place overlooking the Brisbane River. We negotiated the 5pm Friday traffic, and found a handicapped park close to the venue, and I felt able to walk as long as I had Jan’s hand protecting and supporting me. Nothing else for it but to get on with it.
Great evening, very classy reception, and lovely to catch up with extended family. So towards the end there was great dance music, and we were both watching with envy. Jan and I met at ballroom dancing classes when we were 15, and had always been great movers (or thought we were). So taking my confidence in one hand and Jan’s hand in the other I suggested we get on the floor with everyone else. I do not move freely, so I planted my feet and moved my body to the music, allowing Jan to dance more freely (admittedly on the spot…). I had not seen that smile of hers like that for a long time. I was so glad I did it.
So after some more rest, and then a round of goodbyes and hugs (all supported by Jan’s little hand in mine, we did the ritual toilet break, walked to the car, and I drove home.
So how did I do all that, with my residual paraplegia? It is a matter of confidence. If you like I may be doing some sort of ‘confidence trick’ on myself, but it worked. We have come to earn that pushing me a bit is not detrimental, as long as I can do something, and then have a rest before doing something more (an amazing insight for me). I did not have an accident (which could have undermined the whole thing).

I am a bit sore today. But I do not care.

1 comment:

  1. I feel your heart through your words..Don't never stop going I did and im having a hard time trying to figure it out now. My husband decided he wanted out,so I lost that hand I use to hold and I just haven't figured out how to do this (TM) by myself.