I think I've now had a very small taste of what so many here have been through--and of what the future holds. The staff has been wonderful, dealing with all of my many questions and concerns, but by yesterday I was exhausted. Clearly I need to toughen up!
We expected back pain, but apparently the restraints they used during surgery have left his thighs very sore--he attributes his sudden inability to move his own legs in order to turn over in the bed to that pain (I just keep telling myself that if pain is causing this new limitation that it is probably temporary this time). PT came yesterday and got him up with great effort. The therapist is a small gal--very capable, but hubby was worried that if he crumpled he'd take them both down. My son arrived just in time, and with experience on one side of him and strength on the other, hubby had the confidence to get vertical for a few moments (no steps, but he was on his feet!). It took longer to rise than he was able to stand, and I had visions of some of the exhausting transfers I've read about. This is quite a dance, balancing his need to conserve strength with the need to get him moving. I started to panic about how I'd handle him at home if he doesn't start walking again, since the house modifications have not been done, but then I flashed to Atsugi taking a sledge hammer to the walls in his rented home and realized that he can come home whenever he wants!
My son stayed and I was able to come home, where I had my own little pity party before collapsing into a sound sleep. I just realized that this is the first time I've been alone in this house since January when we got his diagnosis--the first time I've been able to cry without worrying about someone hearing me--and I'm having trouble stopping. Crap, here I go again... It's morning now and I ask myself what was the hardest part of all of this, and it's seeing the pain and frustration on his face, and then something else. My superhero husband who has always taken care of everyone else and never met a challenge he couldn't overcome knows the monster will eventually beat him. I've been through quite a few surgeries with him, but this one is soooo different. I'm so afraid that the future he sees will undermine his struggle with today's challenges. I know I'm rambling, ARGH! God I hate this disease. Even the IDEA of it is toxic. If some of the DIHALS who just won't go away REALLY understood what the are wishing on themselves they'd find another disease to worry about. See...there I go again...but that's ok, because anger gives me strength.
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