Last night Brad and I spent two hours filming a video for our niece’s fourth birthday. That was really overdoing it.
He pushed through and tried to conserve energy as much as possible, but tonight while warming up some soup, he hit the point of no return.
It got to the point where he couldn’t get from his wheelchair to the couch, and ended up on the floor. I tried to pick him up, which only squished his chest and made everything worse. Long story short, he is finally on the couch and I have helped whenever possible but I haven’t been able to do enough I feel.
When Brad is struggling I feel very helpless. I don’t feel pity towards him, but I do feel guilt that I can’t do more and I feel sorry that he is struggling. I wish I were strong enough to carry him in a comfortable position and place him where he wants to be. I can do little things, like remove his bowtie, bring him medication to help with the muscle spasms, and cover him with a blanket. But I want so badly to take his exhaustion on myself.
If I could take on his struggles myself and let him have more energy, even moderately more energy, I would in a heartbeat. One of the most helpless feelings in the world for me is when he is struggling and I cannot do anything to help him.
It’s just not fair that spending two hours doing something enjoyable puts him in such physical distress. That he doesn’t even have the energy to lift a spoon of soup to his mouth because he used his energy and then some shooting a one minute video.
I know he doesn’t spend time or energy feeling badly for himself. He just accepts his disability and gets on with his life. But sometimes I just feel it is so unfair. He has so much to offer the world, and it is curtailed sometimes because of his exhaustion.
I guess I’m just feeling sad and helpless myself watching him struggle. It’s hardest for me when he struggles. Even harder for me than when I am struggling.