Are there any books about coping with getting well?
August 29, 2016 5:24 PM Subscribe
There are lots of books, both memoirs and self-help, about coping with an illness or new disability. Are there any about the opposite: how to adapt when you get well after a long illness?
I'm currently on day 6 of what is likely to be a 10-12 day hospital stay for head pain. I've had a headache for 22 years; for the last two years, it's been a severe headache every day that has left me with an unpredictable amount of functional time from day-to-day. I might be more-or-less functional for three, or five, hours. Or I might be functional not at all.
Since arriving at the hospital, I've responded well to various treatments, and experienced a lower level of pain than I've had in two years. I had stopped hoping to get better some time ago, and came into the hospital expecting this to be yet another thing that did little or nothing for me. I was wrong about this, at least in the short term, which is good. I'm sure not saying it's anything but good!
But after two years of trying to adapt to a significantly reduced level of functioning, I find that I am anxious about the possibility of success. If we can maintain my improvement as an outpatient, how do I adapt to having more time and energy? How do I know how hard to push myself? How do I deal with the possibility that people will expect more of me? That I will expect too much of myself? With the not unlikely possibility that there will be a turn for the worse in my future?
Do you know of memoirs or self-help books by or about people who've experienced something similar? Has this happened to you? Did you get better when you had stopped hoping to get better? How did you make the adjustment? Alternately, do you have a relapsing-remitting condition like MS or depression that has given you a lot of practice at navigating transitions between different levels of functioning? Teach me.
I'm currently on day 6 of what is likely to be a 10-12 day hospital stay for head pain. I've had a headache for 22 years; for the last two years, it's been a severe headache every day that has left me with an unpredictable amount of functional time from day-to-day. I might be more-or-less functional for three, or five, hours. Or I might be functional not at all.
Since arriving at the hospital, I've responded well to various treatments, and experienced a lower level of pain than I've had in two years. I had stopped hoping to get better some time ago, and came into the hospital expecting this to be yet another thing that did little or nothing for me. I was wrong about this, at least in the short term, which is good. I'm sure not saying it's anything but good!
But after two years of trying to adapt to a significantly reduced level of functioning, I find that I am anxious about the possibility of success. If we can maintain my improvement as an outpatient, how do I adapt to having more time and energy? How do I know how hard to push myself? How do I deal with the possibility that people will expect more of me? That I will expect too much of myself? With the not unlikely possibility that there will be a turn for the worse in my future?
Do you know of memoirs or self-help books by or about people who've experienced something similar? Has this happened to you? Did you get better when you had stopped hoping to get better? How did you make the adjustment? Alternately, do you have a relapsing-remitting condition like MS or depression that has given you a lot of practice at navigating transitions between different levels of functioning? Teach me.
This has happened to me on a small scale. The good news is that people did not expect more of me until I consistently demonstrated I was able to do more.
posted by bq at 6:48 PM on August 29, 2016 [3 favorites]
posted by bq at 6:48 PM on August 29, 2016 [3 favorites]
Has this happened to you?
Yes.
Did you get better when you had stopped hoping to get better?
Yup. Pretty much had resigned myself to being broken for the rest of my life. I mean, there was part of me that hoped maybe some day and someway I'd get better. But I had accepted this was just what life was going to be, and I had to adapt.
How did you make the adjustment?
I'm still adjusting? For me it's been just shy of 5 years so I have less time of feeling broken (I know disabled people are not broken, but this was how I saw myself). I've just started to do better since spring and to be honest, I'm not entirely sure it's going to last. I'm not even sure exactly what got me better, I was treated, months past with minimal results and return to disfunction, then suddenly things got better during a flurry of other things that probably shouldn't have helped this much, so I don't know what to expect.
So I don't have an answer, I'm doing my best to take each day as it comes. I'm planning on trying to go back to work part time once I'm back from a trip. I am not sure I can handle work, period, thus the wanting to try part time. But I could sit and keep waiting to see if I have problems again, or jump in with the risk of failure. I'm also not 100%, but better enough that I was sick of twiddling my fingers.
I am terrified I'm going to relapse. I'm terrified that working will put me into some maladaptive behaviors that will erode my functioning over time. (Mainly my tendency to cut out healthy habits when I'm really engaged in work.)
Friends have been pretty understanding and supportive, though one thing I'm discovering is that I'm not in their lives as much. Suddenly I'm feeling better and don't have the people to hang out that I used to. They're still friends, but having no not been able to hang out on a regular basis, they have moved on. Not out of any cruelty and most have tried to make time. It's just different; I suspect if I had moved away for 5 years and moved back, I'd had similar things. Anyway, so in some ways, recovery has been lonely. So I've been using meetup.com to try and get socializing that way, and then go to coffee shops to work on my computer; largely because it puts me around people and I need that now.
I'm terrified of what finding work will be like now. The field I'm in is fast moving, and a 5 year absense is a lot. There aren't a lot of part time positions either. And some things have changed, like I can't type as much still, so I have to change some of the work I love and look for similar but different work that accommodates the remaining physical problems.
But in spite of the fear, I'm just as happy as can be that I might be able to get back to working and living life the way I want to. I thought about waiting longer to pursue work to test the waters on the whole "feeling better" and mayb pursuing personal projects in the meantime But that's not who I am; I have to jump in. If I relapse, I'll deal with that then. I know it will be crushing, but I can't dwell on that now.
Congrats at seeing some relie and maybe a light at the end of the tunnel. I know how great it was when I had the thoughy "I think I'm doing better. How did that happen? How long before I even utter the words so I don't jinx it. But this is feeling and doing better, at least I'm pretty sure of it.
Feel free to memail me.
posted by [insert clever name here] at 7:41 PM on August 29, 2016 [4 favorites]
Yes.
Did you get better when you had stopped hoping to get better?
Yup. Pretty much had resigned myself to being broken for the rest of my life. I mean, there was part of me that hoped maybe some day and someway I'd get better. But I had accepted this was just what life was going to be, and I had to adapt.
How did you make the adjustment?
I'm still adjusting? For me it's been just shy of 5 years so I have less time of feeling broken (I know disabled people are not broken, but this was how I saw myself). I've just started to do better since spring and to be honest, I'm not entirely sure it's going to last. I'm not even sure exactly what got me better, I was treated, months past with minimal results and return to disfunction, then suddenly things got better during a flurry of other things that probably shouldn't have helped this much, so I don't know what to expect.
So I don't have an answer, I'm doing my best to take each day as it comes. I'm planning on trying to go back to work part time once I'm back from a trip. I am not sure I can handle work, period, thus the wanting to try part time. But I could sit and keep waiting to see if I have problems again, or jump in with the risk of failure. I'm also not 100%, but better enough that I was sick of twiddling my fingers.
I am terrified I'm going to relapse. I'm terrified that working will put me into some maladaptive behaviors that will erode my functioning over time. (Mainly my tendency to cut out healthy habits when I'm really engaged in work.)
Friends have been pretty understanding and supportive, though one thing I'm discovering is that I'm not in their lives as much. Suddenly I'm feeling better and don't have the people to hang out that I used to. They're still friends, but having no not been able to hang out on a regular basis, they have moved on. Not out of any cruelty and most have tried to make time. It's just different; I suspect if I had moved away for 5 years and moved back, I'd had similar things. Anyway, so in some ways, recovery has been lonely. So I've been using meetup.com to try and get socializing that way, and then go to coffee shops to work on my computer; largely because it puts me around people and I need that now.
I'm terrified of what finding work will be like now. The field I'm in is fast moving, and a 5 year absense is a lot. There aren't a lot of part time positions either. And some things have changed, like I can't type as much still, so I have to change some of the work I love and look for similar but different work that accommodates the remaining physical problems.
But in spite of the fear, I'm just as happy as can be that I might be able to get back to working and living life the way I want to. I thought about waiting longer to pursue work to test the waters on the whole "feeling better" and mayb pursuing personal projects in the meantime But that's not who I am; I have to jump in. If I relapse, I'll deal with that then. I know it will be crushing, but I can't dwell on that now.
Congrats at seeing some relie and maybe a light at the end of the tunnel. I know how great it was when I had the thoughy "I think I'm doing better. How did that happen? How long before I even utter the words so I don't jinx it. But this is feeling and doing better, at least I'm pretty sure of it.
Feel free to memail me.
posted by [insert clever name here] at 7:41 PM on August 29, 2016 [4 favorites]
Response by poster: Thanks so much. Few answers but helpful ones.
The unit psychologist came by to talk to me this morning. She says nearly everybody has this kind of anxiety, and she'll have some guidance for me before I leave.
posted by not that girl at 9:14 AM on August 30, 2016 [1 favorite]
The unit psychologist came by to talk to me this morning. She says nearly everybody has this kind of anxiety, and she'll have some guidance for me before I leave.
posted by not that girl at 9:14 AM on August 30, 2016 [1 favorite]
The memoir Two Kinds of Decay talks about repeated recovery and relapse.
posted by carrioncomfort at 10:14 AM on August 30, 2016 [1 favorite]
posted by carrioncomfort at 10:14 AM on August 30, 2016 [1 favorite]
Was thinking about this all day! A book I read a few years ago might be helpful: Passing For Thin by Frances Kuffel. It's a memoir about a woman who loses weight after being obese for her whole life. That's another kind of identity change but it was thoughtfully written and funny and might be not entirely irrelevant.
posted by bq at 10:37 AM on August 30, 2016 [1 favorite]
posted by bq at 10:37 AM on August 30, 2016 [1 favorite]
Yeah, I have done this.
I was mostly bedridden for a time. For a few months, my kingsized bed was my whole world. As I got better and could leave the house, I was agoraphobic. Just remembering it makes me anxious. The sky was so bright and the world was so big and I felt like I would float off into space because there was no ceiling above me.
I learned to track progress by milestones, not deadlines. I remained mostly housebound for a long time. I would sleep during the day and get up at dinner time. It took me 8 hours to get myself fed and showered so I could get a few groceries at 2am. Later, it only took me six hours. My sons helped me track my progress and reminded me of how I didn't grocery shop at all during the worst of it. Their dad did all that for a time.
After I stronger and got a job and was going through a divorce, I would get scared when I would not get showered until 6pm on a Saturday. It was my worst nightmare coming back to haunt me.
I blog about my ongoing battle with my health. You can memail me if you want the link. But you might also find it helpful to search my old answers on AskMe, where I have talked at length about tracking progress, keeping myself occupied so I don't go bonkers, etc.
posted by Michele in California at 11:41 AM on August 30, 2016 [1 favorite]
I was mostly bedridden for a time. For a few months, my kingsized bed was my whole world. As I got better and could leave the house, I was agoraphobic. Just remembering it makes me anxious. The sky was so bright and the world was so big and I felt like I would float off into space because there was no ceiling above me.
I learned to track progress by milestones, not deadlines. I remained mostly housebound for a long time. I would sleep during the day and get up at dinner time. It took me 8 hours to get myself fed and showered so I could get a few groceries at 2am. Later, it only took me six hours. My sons helped me track my progress and reminded me of how I didn't grocery shop at all during the worst of it. Their dad did all that for a time.
After I stronger and got a job and was going through a divorce, I would get scared when I would not get showered until 6pm on a Saturday. It was my worst nightmare coming back to haunt me.
I blog about my ongoing battle with my health. You can memail me if you want the link. But you might also find it helpful to search my old answers on AskMe, where I have talked at length about tracking progress, keeping myself occupied so I don't go bonkers, etc.
posted by Michele in California at 11:41 AM on August 30, 2016 [1 favorite]
This thread is closed to new comments.
I'm glad you are finally finding some relief--two years of debilitating chronic pain is an incredibly long time. Best of luck on your continued treatment.
posted by Owlcat at 6:48 PM on August 29, 2016 [1 favorite]