Reality as it currently is
Sep. 17th, 2016 20:39![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
torquillWaking up after a four-hour nap today, I stared at the ceiling and thought, "I used to be healthier than this."
It's not my imagination. It's not laziness, either. I have been sick a lot for the last year and a half or so, and even my brief periods of functionality were limited. I couldn't contemplate doing even half-time at Davis now, let alone four years of 3/4 time. I physically can't do the yardwork I did two or three years ago.
It's also not "getting older" -- I just turned 40, but that's not 70. Yeah, people start grumbling about knees and backs, but crushing fatigue and brainfog are not a normal part of aging, even for CFS people.
I used to be healthier. I still hold out hope that I can be healthier again, though it's rough contemplating the fact that I react to my own body's systems now. I think that I can reverse this spiral, but it's going to take some drastic measures.
I can't eat dairy now. It's not that I'm allergic (thank goodness), I just react to the high levels of estrogen it contains. I avoid soy already. I should be careful with brassicas again, especially as we head into cool-season vegetable weather. I'm coping with more dietary restrictions even as I battle with nausea, and it's draining to have to fight through the exhaustion and fog to figure out -- and create -- what food I can still eat. Not to mention that I'm stressing over the cost of groceries, since my income has tanked.
My SSI case is advancing; I've gotten the dates for my medical and psych examinations. These are routine, mostly to find out whether I have obvious and severe disabilities such as paraplegia or rampant schizophrenia. Still, it's one more step, and it's progressing faster than I'd feared. I know that the long wait will be once they have all the info they need for a determination.
I'm considering applying for a handicapped placard, especially since my foot is still giving me trouble because of my rapid weight gain. The exhaustion is chronic, though, and it feels like every six months or so I get some new or recurring mobility issue. Dr. J says he thinks I need one... maybe it's time. Maybe I should see whether I'm eligible for food stamps, too, to supplement the household groceries.
My conversation with The Man helped me find some perspective on being permanently disabled, but I haven't assimilated it fully yet. I've been too sick to really sit with it, either (there's irony). As soon as I got back, I had my Lupron shot... several days later I started a heavy period which lasted more than a week, and hit me with blood loss and depression. Now I'm nauseated and exhausted. This is acting like the first eight-week shot, not like the third -- my estrogen seems to be spiking, as I've had a hot flash only once every few days. At my best I was getting about a dozen or more per day. So it's not that I'm getting even more sensitive to estrogen, it's that the shots are ineffective, and Dr. Keller has told me there's nothing more she can do on that score.
I have an appointment with her at the beginning of October, and I'm still going to argue strongly for a full hysterectomy post-haste. I want every estrogen-generating organ we can reasonably eliminate gone. I'll still have my fat reserves, but hopefully I can hit the aromatase inhibitors hard enough to tip the balance in the other direction and start losing some of that hormone-induced weight. Speed is of the essence here, as the longer I spend with a toxic load on my system, the more damaged those systems can get.
Part of my depression around this is that my dream of independence was partly based on a dream of having a normal life. It's hard to give that one up, even after years of not even coming close. I spend my days battling for health others take for granted... let's just hope I can secure enough to have some energy for the things I enjoy again.
I'm mostly succeeding at self-care, at least... I've had so much practice by now that I can get myself clean and dressed, eat something nourishing on a reasonably regular schedule, and deal with contingencies like my ever-sprainable foot. I'm still leaning on my therapist, who is quite supportive. Nothing in my life is falling to bits, though I'm behind on laundry and I'm staring at my last GSE capsule (I'll make more tonight). So I'll have to be content with that, and bury myself in FB and books and Ingress, and wait for better times.
It seems like a lot of my life has been spent waiting for things to improve. At least I've had a lot of practice at that too.
It's not my imagination. It's not laziness, either. I have been sick a lot for the last year and a half or so, and even my brief periods of functionality were limited. I couldn't contemplate doing even half-time at Davis now, let alone four years of 3/4 time. I physically can't do the yardwork I did two or three years ago.
It's also not "getting older" -- I just turned 40, but that's not 70. Yeah, people start grumbling about knees and backs, but crushing fatigue and brainfog are not a normal part of aging, even for CFS people.
I used to be healthier. I still hold out hope that I can be healthier again, though it's rough contemplating the fact that I react to my own body's systems now. I think that I can reverse this spiral, but it's going to take some drastic measures.
I can't eat dairy now. It's not that I'm allergic (thank goodness), I just react to the high levels of estrogen it contains. I avoid soy already. I should be careful with brassicas again, especially as we head into cool-season vegetable weather. I'm coping with more dietary restrictions even as I battle with nausea, and it's draining to have to fight through the exhaustion and fog to figure out -- and create -- what food I can still eat. Not to mention that I'm stressing over the cost of groceries, since my income has tanked.
My SSI case is advancing; I've gotten the dates for my medical and psych examinations. These are routine, mostly to find out whether I have obvious and severe disabilities such as paraplegia or rampant schizophrenia. Still, it's one more step, and it's progressing faster than I'd feared. I know that the long wait will be once they have all the info they need for a determination.
I'm considering applying for a handicapped placard, especially since my foot is still giving me trouble because of my rapid weight gain. The exhaustion is chronic, though, and it feels like every six months or so I get some new or recurring mobility issue. Dr. J says he thinks I need one... maybe it's time. Maybe I should see whether I'm eligible for food stamps, too, to supplement the household groceries.
My conversation with The Man helped me find some perspective on being permanently disabled, but I haven't assimilated it fully yet. I've been too sick to really sit with it, either (there's irony). As soon as I got back, I had my Lupron shot... several days later I started a heavy period which lasted more than a week, and hit me with blood loss and depression. Now I'm nauseated and exhausted. This is acting like the first eight-week shot, not like the third -- my estrogen seems to be spiking, as I've had a hot flash only once every few days. At my best I was getting about a dozen or more per day. So it's not that I'm getting even more sensitive to estrogen, it's that the shots are ineffective, and Dr. Keller has told me there's nothing more she can do on that score.
I have an appointment with her at the beginning of October, and I'm still going to argue strongly for a full hysterectomy post-haste. I want every estrogen-generating organ we can reasonably eliminate gone. I'll still have my fat reserves, but hopefully I can hit the aromatase inhibitors hard enough to tip the balance in the other direction and start losing some of that hormone-induced weight. Speed is of the essence here, as the longer I spend with a toxic load on my system, the more damaged those systems can get.
Part of my depression around this is that my dream of independence was partly based on a dream of having a normal life. It's hard to give that one up, even after years of not even coming close. I spend my days battling for health others take for granted... let's just hope I can secure enough to have some energy for the things I enjoy again.
I'm mostly succeeding at self-care, at least... I've had so much practice by now that I can get myself clean and dressed, eat something nourishing on a reasonably regular schedule, and deal with contingencies like my ever-sprainable foot. I'm still leaning on my therapist, who is quite supportive. Nothing in my life is falling to bits, though I'm behind on laundry and I'm staring at my last GSE capsule (I'll make more tonight). So I'll have to be content with that, and bury myself in FB and books and Ingress, and wait for better times.
It seems like a lot of my life has been spent waiting for things to improve. At least I've had a lot of practice at that too.