Help me cope with chronic illness
December 16, 2012 10:45 AM Subscribe
I really, really don't want to be 'the sick girl', help me figure out how to look after myself and navigate the social aspects of having a chronic illness.
Looking for ideas,resources and hobbies to help cope with a chronic illness that often leaves me under the weather. Specifically how to retain fitness, deal with other people and stave off the boredom and frustration caused by being ill a lot.
I have a relatively mild chronic condition that nonetheless often leaves me whacked out and fit for little else but my bed. I have had a case of drug resistant giardia for over a year, while it looks like the most recent round of drugs may have defeated the little pests I'm left with numerous GI issues and occasional fatigue.
I'm looking for material about other people coping with similar conditions for some tips and inspirations. Blogs or books by people who have suffered chronic giardiasis would be awesome but I'll settle for material by anyone who had experienced a chronic condition. Any ideas for useful/productive but not too strenuous hobbies I could be getting on with would also be greatly appreciated.
I'm particularly interested in books or blogs about communicating with other people about your condition. I don't want to be defined as the girl who is always ill, but sometimes it feels like that's who I am. How much and how do I talk to various people about my illness - including but not limited to:
- those close to me - treading the line between not worrying them and being upfront about my current condition.
- at work - colleagues, subordinates and management
- those who think illness is in the mind, or all in your head and urge me to 'think myself better.'I'm looking for kind but firm ways to deal with this lot since for the most part they do mean well.
Also looking for stories about staying positive and avoiding falling into depression / bad mood when you are chronically ill and frustrated at not being able to see a way out of it.
I'd also like to stay as physically fit as possible while being ill so any advice you have in that regard would be most welcome.
Finally I'm looking for ideas for things to do when one is ill enough have to take it easy and not able to concentrate very well but a bit too bored by just vegging out in front of the tv. Hobbies or projects that result in something concrete and would make time spent on them feel productive a bonus.
Looking for ideas,resources and hobbies to help cope with a chronic illness that often leaves me under the weather. Specifically how to retain fitness, deal with other people and stave off the boredom and frustration caused by being ill a lot.
I have a relatively mild chronic condition that nonetheless often leaves me whacked out and fit for little else but my bed. I have had a case of drug resistant giardia for over a year, while it looks like the most recent round of drugs may have defeated the little pests I'm left with numerous GI issues and occasional fatigue.
I'm looking for material about other people coping with similar conditions for some tips and inspirations. Blogs or books by people who have suffered chronic giardiasis would be awesome but I'll settle for material by anyone who had experienced a chronic condition. Any ideas for useful/productive but not too strenuous hobbies I could be getting on with would also be greatly appreciated.
I'm particularly interested in books or blogs about communicating with other people about your condition. I don't want to be defined as the girl who is always ill, but sometimes it feels like that's who I am. How much and how do I talk to various people about my illness - including but not limited to:
- those close to me - treading the line between not worrying them and being upfront about my current condition.
- at work - colleagues, subordinates and management
- those who think illness is in the mind, or all in your head and urge me to 'think myself better.'I'm looking for kind but firm ways to deal with this lot since for the most part they do mean well.
Also looking for stories about staying positive and avoiding falling into depression / bad mood when you are chronically ill and frustrated at not being able to see a way out of it.
I'd also like to stay as physically fit as possible while being ill so any advice you have in that regard would be most welcome.
Finally I'm looking for ideas for things to do when one is ill enough have to take it easy and not able to concentrate very well but a bit too bored by just vegging out in front of the tv. Hobbies or projects that result in something concrete and would make time spent on them feel productive a bonus.
Life Disrupted by Laurie Edwards is geared toward people in their 20s and 30s. I understand her blog is also very useful.
posted by ocherdraco at 11:10 AM on December 16, 2012 [2 favorites]
posted by ocherdraco at 11:10 AM on December 16, 2012 [2 favorites]
I definitely hear you on the "too ill/low on energy to focus but wanting to do something productive" dilemma. I've recently gotten into knitting, which works really well for me and might for you because it fits your criteria of not needing a lot of concentration (I knit while in front of the TV, or sometimes even reading) but producing concrete results. Even if you run out of things you want to knit for yourself or other people, there are all sorts of charity knitting drives you can take part in. Also, I've found my local knitting group is great for getting me out of the apartment and socializing in a very low-key, unstrenuous way for just a couple of hours, which is helpful on those weeks when even going out to dinner and a movie with friends just seems like too much mental and physical effort.
posted by bettafish at 12:05 PM on December 16, 2012 [1 favorite]
posted by bettafish at 12:05 PM on December 16, 2012 [1 favorite]
I've been where you are. It's hard. Honestly, I think seeing a therapist is the most helpful treatment for me. I opted out of telling family, because I didn't want to be the 'sick girl' I'm still on the fence with that though.
Anyway, I wish you the best
posted by ibakecake at 12:13 PM on December 16, 2012
Anyway, I wish you the best
posted by ibakecake at 12:13 PM on December 16, 2012
OP, please MeMail me, I'd love to chat.
Like bettafish I knit. A lot.
posted by telegraph at 12:23 PM on December 16, 2012
Like bettafish I knit. A lot.
posted by telegraph at 12:23 PM on December 16, 2012
Have you read The Spoon Theory? It may be helpful in explaining to others that your reserves are low.
posted by acorncup at 12:30 PM on December 16, 2012 [3 favorites]
posted by acorncup at 12:30 PM on December 16, 2012 [3 favorites]
I cross-stitch.
To the idiots that think it's all in your head: "haha, tell that to my lab results".
posted by Neekee at 12:33 PM on December 16, 2012
To the idiots that think it's all in your head: "haha, tell that to my lab results".
posted by Neekee at 12:33 PM on December 16, 2012
I also highly recommend Laurie Edwards book and blog. She has lot of links as well to fellow chronic illness bloggers.
Those close to me know the details, or at least a summary of the details (I have chronic inflammatory arthritis. Sometimes I'm in too much pain to do things. I also have very limited energy a lot of the time). I have no doubt lost a few friends who didn't like that I don't do late night events anymore or that I sometimes have to bail at the last minute because I'm too tired for something. But the folks who have stuck around have been nothing but understanding. Best of all are my friends who also have chronic conditions. I've done some instant bonding with people over our health problems and it makes life much more pleasant to remember that I am not alone.
People at work know nothing. Yes, this means I prioritize putting every bit of energy into work to cover for myself. Yes, that sucks, but it's what I need to do right now.
People who want me to wish myself better ( or try some special diet or "alternative remedy") get told that I'm under the care of a rheumatologist who is double board certified in internal medicine as well and that I follow his guidelines. If there were a cure for my condition, he would know about it. Some folks get offended by this response. I'm pretty offended by their ignorance and the inherent blaming of me for my health that is implicit to these sorts of comments.
Oh and I also cross-stitch.
posted by hydropsyche at 12:42 PM on December 16, 2012 [3 favorites]
Those close to me know the details, or at least a summary of the details (I have chronic inflammatory arthritis. Sometimes I'm in too much pain to do things. I also have very limited energy a lot of the time). I have no doubt lost a few friends who didn't like that I don't do late night events anymore or that I sometimes have to bail at the last minute because I'm too tired for something. But the folks who have stuck around have been nothing but understanding. Best of all are my friends who also have chronic conditions. I've done some instant bonding with people over our health problems and it makes life much more pleasant to remember that I am not alone.
People at work know nothing. Yes, this means I prioritize putting every bit of energy into work to cover for myself. Yes, that sucks, but it's what I need to do right now.
People who want me to wish myself better ( or try some special diet or "alternative remedy") get told that I'm under the care of a rheumatologist who is double board certified in internal medicine as well and that I follow his guidelines. If there were a cure for my condition, he would know about it. Some folks get offended by this response. I'm pretty offended by their ignorance and the inherent blaming of me for my health that is implicit to these sorts of comments.
Oh and I also cross-stitch.
posted by hydropsyche at 12:42 PM on December 16, 2012 [3 favorites]
Concerning details: read, read, and read some more about it. Learn as much as you humanly can about it, every mechanism, why certain symptoms, etc etc. Not only will this help you better understand why your body's gone awry and the process of fixing it, you will also be able to calmly discuss this with whomever. Some people won't want to know a thing, others will be genuinely curious and grateful for the info.
Good luck!
posted by Neekee at 12:45 PM on December 16, 2012
Good luck!
posted by Neekee at 12:45 PM on December 16, 2012
I also like knitting and puzzles. I like cooking but you have to be realistic; ending up in tears cause you're so tired and your mayonnaise has split is no fun.
Getting out for a walk often makes me feel better, even though it feels kind of wimpy as a former competitive runner. But don't let it turn into a source of guilt. A friend with repeated two year bouts of mono said she had a 20 min yoga routine that made her feel energized. Biking is easier than running and you get to go further so it feel more productive.
My boyfriend says it's helpful when I'm in tears if I can explain why: "My medication is making me drop things and I think it's making me extra frustrated about that too and I just want to cry."
It's nice to have someone to talk to for approval. Maybe I should be that person for myself but when I tried steroids and they were making me spontaneously cry, it was nice to be told by my physio and my boyfriend just to go home and take care of myself. My physio is basically my therapist and I love her, but if I didn't have her, I think I would find an actual therapist.
Comparing experiences with someone else is really nice and makes you feel like you're not the only one.
Some people I know love mindfulness meditation and CBT, but it never really took for me.
Feel free to memail me if you want to commiserate. I'm still struggling with how to feel about myself now that I'm so tired, but mostly I'm happy.
posted by carolr at 1:26 PM on December 16, 2012 [1 favorite]
Getting out for a walk often makes me feel better, even though it feels kind of wimpy as a former competitive runner. But don't let it turn into a source of guilt. A friend with repeated two year bouts of mono said she had a 20 min yoga routine that made her feel energized. Biking is easier than running and you get to go further so it feel more productive.
My boyfriend says it's helpful when I'm in tears if I can explain why: "My medication is making me drop things and I think it's making me extra frustrated about that too and I just want to cry."
It's nice to have someone to talk to for approval. Maybe I should be that person for myself but when I tried steroids and they were making me spontaneously cry, it was nice to be told by my physio and my boyfriend just to go home and take care of myself. My physio is basically my therapist and I love her, but if I didn't have her, I think I would find an actual therapist.
Comparing experiences with someone else is really nice and makes you feel like you're not the only one.
Some people I know love mindfulness meditation and CBT, but it never really took for me.
Feel free to memail me if you want to commiserate. I'm still struggling with how to feel about myself now that I'm so tired, but mostly I'm happy.
posted by carolr at 1:26 PM on December 16, 2012 [1 favorite]
ChronicBabe.com might meet some of your needs.
posted by Colonel_Chappy at 2:35 PM on December 16, 2012
posted by Colonel_Chappy at 2:35 PM on December 16, 2012
Two books that have helped me:
Encounters With the Invisible: specifically about chronic fatigue syndrome (not what I have), but very helpful for anyone dealing with chronic illness
How to be Sick: the best owners' manual I've found for living a decent life in a sick body
I've also found that it's very helpful to limit my exposure to certain sorts of things that many people apparently find inspiring, uplifting and motivational -- things like stories of people overcoming disability through perseverance or will. It doesn't matter how motivated I am, my illness and its limitations are still present. Some of these "hopeful" stories just make me unbearably sad, so I give myself permission to skip them.
For retaining some basic level of fitness, yoga has worked excellently well for me. It can be done at such a slow, soothing level that very little effort is required to gain great benefit.
I can usually read, but that didn't feel very productive until I set myself a goal of reading a book from every country. When I'm reading about a particular place, I'll look at pictures, maps, blogs, whatever I can find related to that place. This sort of scratches the same itch as traveling, but for lots less energy and money.
I haven't started on them yet, but I'm pleased to see that there are lots of nice coloring books for grown-ups. Seems like a reasonable way to spend some recovery time.
posted by Corvid at 2:53 PM on December 16, 2012 [2 favorites]
Encounters With the Invisible: specifically about chronic fatigue syndrome (not what I have), but very helpful for anyone dealing with chronic illness
How to be Sick: the best owners' manual I've found for living a decent life in a sick body
I've also found that it's very helpful to limit my exposure to certain sorts of things that many people apparently find inspiring, uplifting and motivational -- things like stories of people overcoming disability through perseverance or will. It doesn't matter how motivated I am, my illness and its limitations are still present. Some of these "hopeful" stories just make me unbearably sad, so I give myself permission to skip them.
For retaining some basic level of fitness, yoga has worked excellently well for me. It can be done at such a slow, soothing level that very little effort is required to gain great benefit.
I can usually read, but that didn't feel very productive until I set myself a goal of reading a book from every country. When I'm reading about a particular place, I'll look at pictures, maps, blogs, whatever I can find related to that place. This sort of scratches the same itch as traveling, but for lots less energy and money.
I haven't started on them yet, but I'm pleased to see that there are lots of nice coloring books for grown-ups. Seems like a reasonable way to spend some recovery time.
posted by Corvid at 2:53 PM on December 16, 2012 [2 favorites]
I feel for you - before my colitis was diagnosed, this was a suspect for me, too.
I have written about some of my coping strategies on the site before. Best of luck.
posted by smoke at 3:16 PM on December 16, 2012
I have written about some of my coping strategies on the site before. Best of luck.
posted by smoke at 3:16 PM on December 16, 2012
Check out: Standford University Chronic Disease Management Program. They offer free self-management programs in locals in the U.S. and Canada. I believe there are some on-line versions. The book: Living a Healthy Life With Chronic Conditions, is also good. I think the best part of the program(s) I experienced was being around others with similar experiences.
posted by what's her name at 6:51 AM on December 17, 2012
posted by what's her name at 6:51 AM on December 17, 2012
My wife has fibromyalgia. When you talk about those "close to you", her equivalent would be me and our (adult) sons. She basically lets it all hang out with us; she kind of has to.
At work, she sucks it up and acts as upbeat and healthy as she possibly can. She's a teacher, and if she wallows in it, the kids will ask questions and sidetrack her lessons, and it's just better for morale of the other staff as well as her standing at the school if she acts as healthy as possible while she's there.
She had an incident that covers your third group- the non-believers- just this last week or so; her sister is one of those "rub a little mud on it and walk it off" types. My advice to her was to simply set boundaries: "This is my own personal matter and will not be further discussed. Period." My wife took a different tack and had a long, exhaustive phone call with her sister which didn't apparently change her viewpoint at all, so I think my wife will be falling back on my advice if it comes up again.
posted by Doohickie at 8:28 AM on December 17, 2012
At work, she sucks it up and acts as upbeat and healthy as she possibly can. She's a teacher, and if she wallows in it, the kids will ask questions and sidetrack her lessons, and it's just better for morale of the other staff as well as her standing at the school if she acts as healthy as possible while she's there.
She had an incident that covers your third group- the non-believers- just this last week or so; her sister is one of those "rub a little mud on it and walk it off" types. My advice to her was to simply set boundaries: "This is my own personal matter and will not be further discussed. Period." My wife took a different tack and had a long, exhaustive phone call with her sister which didn't apparently change her viewpoint at all, so I think my wife will be falling back on my advice if it comes up again.
posted by Doohickie at 8:28 AM on December 17, 2012
Paula Kamen's excellent All in My Head: An Epic Quest to Cure an Unrelenting, Totally Unreasonable and Only Slightly Enlightening Headache gets a shout-out from ChronicBabe.com (including links to other reviews).
Here's a transcript of an interview with Kamen about her experiences with chronic daily headache (which she's been dealing with since 1991).
Kamen is funny, feminist, informative, and her book is well-researched and well-written. She walks the walk. Among the issues she deals with is whether, how much, and when to "come out" to other people about her illness, and how to deal with their (often baffling) reactions.
For example, she mentions that some of her friends were much more sympathetic when she gained a lot of weight due to one of her headache medications than they were to the actual headache. The angst of the weight gain was something they could relate to, while the idea of a constant headache that's "a 3 or 4 on a scale of 10" was baffling.
I have epilepsy, not chronic daily headache, but a lot of what Kamen says rings true to me. I have an invisible disorder. Unless someone actually sees me having a seizure, it's hard for them to grasp that epilepsy affects my daily life. My daily dose of anticonvulsant medication* causes a certain amount of brain fog that I've had to learn to work around. And the irregular hours that I work (sometimes 6 p.m.-2 a.m., other times 10 a.m.-6 p.m.) screw up my sleep and make me more vulnerable to seizures -- a concept that is hard to explain to people other than neurologists and other people with epilepsy. It's a frustrating and lonely place to be in.
Anyway, read All in My Head and check out Paula Kamen's website, which has a list of patient resources for people with chronic pain and other chronic illnesses. Here's one link I might check out myself: an online support/education group for people with lupus, called ButYouDontLookSick.com.
*(This drug, Depakote, is also prescribed off-label to headache sufferers. In fact, epilepsy, bipolar disorder, migraine, chronic daily headache, and depression are thought to be related at the neurological level, Kamen reports.)
posted by virago at 9:48 PM on December 17, 2012
Here's a transcript of an interview with Kamen about her experiences with chronic daily headache (which she's been dealing with since 1991).
Kamen is funny, feminist, informative, and her book is well-researched and well-written. She walks the walk. Among the issues she deals with is whether, how much, and when to "come out" to other people about her illness, and how to deal with their (often baffling) reactions.
For example, she mentions that some of her friends were much more sympathetic when she gained a lot of weight due to one of her headache medications than they were to the actual headache. The angst of the weight gain was something they could relate to, while the idea of a constant headache that's "a 3 or 4 on a scale of 10" was baffling.
I have epilepsy, not chronic daily headache, but a lot of what Kamen says rings true to me. I have an invisible disorder. Unless someone actually sees me having a seizure, it's hard for them to grasp that epilepsy affects my daily life. My daily dose of anticonvulsant medication* causes a certain amount of brain fog that I've had to learn to work around. And the irregular hours that I work (sometimes 6 p.m.-2 a.m., other times 10 a.m.-6 p.m.) screw up my sleep and make me more vulnerable to seizures -- a concept that is hard to explain to people other than neurologists and other people with epilepsy. It's a frustrating and lonely place to be in.
Anyway, read All in My Head and check out Paula Kamen's website, which has a list of patient resources for people with chronic pain and other chronic illnesses. Here's one link I might check out myself: an online support/education group for people with lupus, called ButYouDontLookSick.com.
*(This drug, Depakote, is also prescribed off-label to headache sufferers. In fact, epilepsy, bipolar disorder, migraine, chronic daily headache, and depression are thought to be related at the neurological level, Kamen reports.)
posted by virago at 9:48 PM on December 17, 2012
This thread is closed to new comments.
Perhaps there is something in his talk that will help.
posted by dfriedman at 10:55 AM on December 16, 2012 [1 favorite]