• Had to ration energy. On bad days he had to make tough choices, like whether to shower or make the bed.
• Sensitivity to light and sound. He had to nail blankets over windows to block out both, even at his parents' house, a quiet place in the country.
• Severe hand and wrist pain since injury in 2015, which worsened after 2018. Ben was well known among friends and family for dictating most of what he wrote. If he used his hands too much they could become so painful as well as stiff, swollen, and weak that he had to take long breaks from using them. He had special ice packs that could encircle the wrists and often wore them to sleep.
• The burning and pressure in his head could get so bad that he had trouble performing many mental tasks, including reading.
• He sometimes got an aching and tiredness behind the eyes that made it difficult to read, watch TV, drive, and use his eyes for other things.
• Got sudden jolts of pain that could startle and disorient, and sudden blinding pains in the head in particular, one of which caused a car crash.
• Had trouble performing tasks that required lifting his arms over his head, especially repeatedly. He has arthrosis in his right shoulder after two surgeries, but both shoulders began getting weaker after 2018.
• Insomnia and non-restorative sleep. Even when he slept, he could wake after 10 plus hours of sleep feeling the way he once had after skipping sleep for multiple days.
• Post-exertional malaise. A man who hiked almost 500 miles was afterwards reduced for years to a fragile state in which the slightest amount of exercise could cause a cascade of worsening symptoms. He had to warn friends about this, and it often embarrassed him that he came off like a weakling.
• Had trouble bending down due to weakness, fatigue, back and joint pain, pressure and pain in the head, and sometimes chest pain, dizziness, and lightheadedness. His diagnosed postural orthostatic tachycardia syndrome didn't help. He used a grabber tool to get things off the ground.