I do think it is very different for congenital vs. acquired. Well, technically mine are genetic, and I suspect I have EDS, and I was constantly subluxing joints and pulling muscles and things as a child, but I didn't have the all-over debilitating body pain that I did after my work injury at 18.
I have memories of things I will never be able to do anymore. I will never be able to do the 14m hike to see the beautiful meadow that there are pictures of me in as a child. A drive to Seattle -- much less doing any touristy things -- is enough to leave me wiped and exhausted. I sometimes have to use a wheelchair. I have permanent cognitive damage from a medication that was supposed to help my fibro, but in fact made it 3x worse -- permanently. I have virtually no memory of the 4mo I was on that medication; I can only remember brief flashes. I was so bad off then that I would forget in the middle of a fifteen minute conversation what I had said at the start of the conversation and start repeating it. Thankfully, the cognitive issue are nowhere near that bad, but it is enough to affect my writing; I have to now keep copious notes, because I cannot trust my memory. I will forget something important (and then be convinced that it was so great that I can't make it up, and become depressed over it).
Now, even though I was disabled as an adult, my situation is still very different from Morgan's and my ex drake's.
TW mention of rape in this paragraph Drake was in his 40s when he was diagnosed with an autoimmune condition, ankylosing spondylitis. He was an utter douchebag, but becoming disabled -- he has let it destroy him. He has worked all his life, since he was 12yo. He was supporting his mother, who was getting something like $90 a month in child support payments, if that, and he continued to support her until her death. He has always had a job, and he's one of those people whose self-identity is completely wrapped up in his ability to work and provide.
Morgan's disabilities started to appear after a car accident in 2004. In 2006, they were diagnosed with fibromyalgia and hypermobility syndrome. The diagnosis has hit them pretty bad, too; they are able to work by virtue of that their company allows them to work remotely, and they allow flexible hours. Morgan's medication sometimes makes them loopy or tired, and often they get migraines, so sometimes they will be up in the morning for a Google Hangout meeting, get a migraine, or meds kick in and make them tired, take a nap, and then pick up their work later. On top of that they have a sleep disorder (not apnea; there is no treatment for what they have) so often they are sleeping in the day and awake at night. They have frequently done work in the middle of the night. Thankfully, their job considers their flexibility a bonus, not a drawback.
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Date: 2014-02-02 01:08 pm (UTC)I have memories of things I will never be able to do anymore. I will never be able to do the 14m hike to see the beautiful meadow that there are pictures of me in as a child. A drive to Seattle -- much less doing any touristy things -- is enough to leave me wiped and exhausted. I sometimes have to use a wheelchair. I have permanent cognitive damage from a medication that was supposed to help my fibro, but in fact made it 3x worse -- permanently. I have virtually no memory of the 4mo I was on that medication; I can only remember brief flashes. I was so bad off then that I would forget in the middle of a fifteen minute conversation what I had said at the start of the conversation and start repeating it. Thankfully, the cognitive issue are nowhere near that bad, but it is enough to affect my writing; I have to now keep copious notes, because I cannot trust my memory. I will forget something important (and then be convinced that it was so great that I can't make it up, and become depressed over it).
Now, even though I was disabled as an adult, my situation is still very different from Morgan's and my ex drake's.
TW mention of rape in this paragraph
Drake was in his 40s when he was diagnosed with an autoimmune condition, ankylosing spondylitis. He was an utter douchebag, but becoming disabled -- he has let it destroy him. He has worked all his life, since he was 12yo. He was supporting his mother, who was getting something like $90 a month in child support payments, if that, and he continued to support her until her death. He has always had a job, and he's one of those people whose self-identity is completely wrapped up in his ability to work and provide.
Morgan's disabilities started to appear after a car accident in 2004. In 2006, they were diagnosed with fibromyalgia and hypermobility syndrome. The diagnosis has hit them pretty bad, too; they are able to work by virtue of that their company allows them to work remotely, and they allow flexible hours. Morgan's medication sometimes makes them loopy or tired, and often they get migraines, so sometimes they will be up in the morning for a Google Hangout meeting, get a migraine, or meds kick in and make them tired, take a nap, and then pick up their work later. On top of that they have a sleep disorder (not apnea; there is no treatment for what they have) so often they are sleeping in the day and awake at night. They have frequently done work in the middle of the night. Thankfully, their job considers their flexibility a bonus, not a drawback.
(cont'd)