Steroid Myopathy (weakness and loss of body and muscle mass in the hips, thighs, legs, feet, shoulders and upper back, and to a lesser extent the arms as well) had me completely bed-bound since approximately April 7, 2012.
Daily, I have been doing lots of physiotherapy and occupational therapy to get my limbs moving and stronger in order to be able to support my body weight and to rebuild body and muscle mass. I am starting from scratch – literally. I currently have absolutely NO muscles in my legs. We are rebuilding and strengthening the muscles one by one.
However, I am improving and getting stronger which is quite thrilling. Every day I notice myself getting stronger and being able to do things I was unable to do yesterday and that of course is always quite encouraging. In fact, I am now able to shuffle up in my bed (I have not been able to do that for a long time).
I still need to use a bedpan for my bodily functions and require nurses to do a lot of the work for me, which is still somewhat embarrassing for my 43 year old professional woman ego. I understand it currently is a necessity, but nonetheless, having personal control of that simple bodily function everyone takes for granted is one of the major incentives for me to work diligently on building my muscles again. I want to be independent again.
There are days where I have more energy than others so I can exercise more, and other days where I do more basic stuff and need to rest a lot more. Today was more or less a ‘rest’ day where I only did basic exercises but did them nonetheless.
Healing requires a LOT of rest and I need to remember that, and remind the physiotherapist and occupational therapist as well.
I can’t wait to be able to just turn in bed, put my feet on the floor, and stand up on my own, without thinking about it or being afraid to fall. I’m not there yet but the day will come.
Standing Up Robotic Style 18 April 2012
In the meantime, I tried this High Tech machine that enabled me to stand up on my legs, fully supported, but I was standing straight and feeling those leg muscles and glutes stretching was a great feeling.
Here’s hoping to standing on my own legs soon!
Marie-Chantal
Great to hear your progress MC. Looking forward to hearing about you running down those hospital corridors on your way outta there. Also glad to hear you’re alternating between exercising and resting. Sounds like you’ve got things in perspective. Magnificent!!! x
Thanks Jet. I am definitely ‘cautiously’ seeing myself back home in the next few weeks or so and it is quite exciting.
Hope you are well?
MC
Its great To read about you and see that you are getting better. I have leukemia and graft vs host too, is wonderful to find some others on the same journey and see that they still here. It gives me hope. I wish you the best. We are survivors, dont stop fighting. Sorry for my bad english. =)
Glad you left me a message. Yes, we are survivors and warriors and we must keep on fighting. Life is good.
Woo-Hoo! So happy to see the progress. You are on your way!! It’s great that the therapist works with you right there at the hospital. Keep up the hard work.