As I mentioned, I had to venture out in the cold (really
cold) weather yesterday to visit that nun. My husband warmed the car and I donned
layers – turtle neck, sweater, very warm coat, and mittens. I didn’t want to
feel too bulky, but I also didn’t want to freeze if we didn’t get a close
parking space. I own tons of fleece-lined leather gloves – some with the tags
still attached; unfortunately, I can no longer wear them. I can’t use my
immovable right hand to get a glove on my left, and I can’t uncurl my right
fingers enough to get them into the glove. Solution? Mittens! Yet, even with
them, I can’t uncurl my right hand – the mitten just serves as a warm cover.
The car was comfortably warm and we picked up our two
friends for the visit. I had to play navigator for the ride, which meant I had
to really concentrate on directions. We don’t have a GPS or smart phone, so we
(I) had to rely on a combination of Google maps and directions from the home’s
website. Oddly enough, my husband used to live in the area, and I was familiar
with it as well. It had just been a long time and we needed guidance. Even with
several detours and a few wrong turns, we found it. My husband drove us right
to the front entrance, and got my wheelchair for my girlfriend to push. Because
I was so cold, I was huddled up and that is a huge mistake. By the time we
found Sister and exchanged hugs all around, I was suffering some spasms.
However, I shrugged it off and began to enjoy the visit. Because we were short on chairs, I stayed in the (not well padded or supportive) wheelchair. Another huge mistake. After two hours of non-stop chatter and catching up, we began our exit. Of course I needed to visit the facilities and that’s when I realized how stiff I had become. I could barely get out of the chair, and my legs refused to follow my commands. Of course, there was a chorus of, “Are you all right?” “Here let me help you.” and “What happened?” How do I explain my mangled neuro system and the wicked tricks it plays? I laughed off the concerns, took care of business, and accepted help with my coat.
We took a long trek to meet Sister’s friends and then my husband went for the car. Even with just a short time in the cold weather, I was cramping up again. I thought I’d be fine for the forty-five minute ride, except that it lasted for two hours!! Somewhere we made a wrong turn, and in typical Y chromosome fashion, he refused to admit we were lost. Now, I’m hunched up in annoyance and anxiety. Finally, I made him stop so I could ask for directions. After a few more wrong turns, we were on the expressway – at rush hour. My poor friends – one had family coming for dinner, and the other had a 6:30 appointment. Eventually, we delivered them safely amid my profuse apologies, and headed to our house.
Once I went to dislodge myself from the car back into the
frigid zone, I couldn’t move. My husband helped me into the house and I just
dropped on the chair. It’s just so hard to explain that 1) a disease that needs
avoidance from heat can also render one near paralyzed from very cold weather;
2) sitting for long periods of time causes immobility; and 3) even the most
enjoyable experience can often result in total exhaustion. That’s why I usually just suffer in silence
and laugh off the concern from others. Nobody would really understand.
Peace,
Muff


7 comments:
HI MUFF - I understand completely. I wish I didn't, but I do.
Love and understanding
Gail
peace.....
I think you have quite the intrepid spirit, but I also realize that it is quite true: You fully cannot explain your body experience to those of us still 'temporarily able-bodied.' I try, but too often fail, to be compassionate.
I have always wondered why the heat of summer forces me to hibernate inside with cooler air but the cold air of winter turns me into a popsicle that walks like a stiff legged chicken and hides under blankets and quilts.
You know, your spirit and intelligence are so immense that, until you tell us otherwise, one can forget you are seriously disabled. This post, ironically, reminded me of both your ability and your disability. Inspiring in so many ways.
A lot of people with MS have difficulties in extreme temperatures, hot and cold. I am one of them, and it looks like you may be too. I want to live in a place with moderate temps all year round...say 68F!
I, too, understand. The cold is far worse for my spasticity than heat is. And I would much rather be too warm than too cold.
Also, what's with that Y chromosome and its unwillingness to ask for directions? I just don't get it.
Glad that you made it through your trip relatively unscathed. When all was over, I think it was worth the effort.
Gail, thanks for understanding!
Olga, I find you to be very compassionate!
Jan, I wish "they" would address this issue instead of always talking about the heat.
Judy, I think I often tend to hide the disabled part of me on the blog -- what you can't see... Ha! But it's always there, staring me down.
Karen, OK, I'll join you, but I think the only places in the US are in CA.
Webster, The trip was its own reward, and we're already planning a repeat!
Peace,
Muff
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