Coping with chronic illness alone
February 25, 2019 4:41 PM Subscribe
I am dealing with a chronic illness in my 30's with zero form of support system, and I'm really beginning to struggle to keep up. I'm looking for practical advice/hacks for daily life stuff, stories of how you managed, suggestions for resources (for someone with very little money).
I've been dealing with my illness for 15+ years before, but for much of that I wasn't living alone, and had some sort of support. Now, my parents are gone, I have next to no extended family (maybe one aunt across the country that I never talk to), no partner, and no friends. My neighbors are unpleasant and hostile, I live in a small rural town with very little in the way of assistance resources, and I am deeply, deeply uncomfortable with religious groups. I am not seriously 'ill' enough for hospitals to provide much (unlike, as I was told, if I had cancer, thanks). I do not have insurance and am unable to get it (fell into the income gap in a state that didn't expand coverage), and only have about $100 left each month after expenses.
I am not a social person and generally do not enjoy the company of others much - I don't feel lonely, being alone like this - and am unlikely to be able to make many social connections that might help me, even if I had the energy for it. I used to have a few online friends, but they cannot help with the brickspace things I struggle with, and slowly drifted away as I got worse, or asked for help.
I'm not so much struggling with the mental aspect of this, like, I'm mostly in a state of apathetic acceptance because this will never go away and treatment only makes a few symptoms manageable. I have cats, and they basically keep me going from day to day, though i am struggling a bit with the thought of living another 50ish years like this. So I'm not as much in need of advice on how to keep my spirits up, etc.
I am able to hold down a 40 hour job, for barely above minimum wage, but often that's about all I can manage. On days off, I try to accomplish things, but can often measure 'success' in terms of 'I ate something, a got out of bed, I fed the cats, I did the dishes'. I struggle with cleaning, cooking, dealing with trash and laundry, repairs, hygiene, anything beyond basic life needs (car the the mechanic, phone calls, shopping, any sort of hobby).
A lot of this could be solved by hiring someone, but I just don't have the money. I've put some money into things like buying more expensive premade meals rather than cooking, using disposable dish ware so I don't have to wash, delivery of a few things so I don't have to shop as much. I'm also desperately trying to save enough to move.
I'm trying to consider myself lucky because I can hold down a steady job and take care of my cats, but every day when I get home to my messy house/pile of things needing to be done and eat another frozen meal, I feel worse and worse.
I've been dealing with my illness for 15+ years before, but for much of that I wasn't living alone, and had some sort of support. Now, my parents are gone, I have next to no extended family (maybe one aunt across the country that I never talk to), no partner, and no friends. My neighbors are unpleasant and hostile, I live in a small rural town with very little in the way of assistance resources, and I am deeply, deeply uncomfortable with religious groups. I am not seriously 'ill' enough for hospitals to provide much (unlike, as I was told, if I had cancer, thanks). I do not have insurance and am unable to get it (fell into the income gap in a state that didn't expand coverage), and only have about $100 left each month after expenses.
I am not a social person and generally do not enjoy the company of others much - I don't feel lonely, being alone like this - and am unlikely to be able to make many social connections that might help me, even if I had the energy for it. I used to have a few online friends, but they cannot help with the brickspace things I struggle with, and slowly drifted away as I got worse, or asked for help.
I'm not so much struggling with the mental aspect of this, like, I'm mostly in a state of apathetic acceptance because this will never go away and treatment only makes a few symptoms manageable. I have cats, and they basically keep me going from day to day, though i am struggling a bit with the thought of living another 50ish years like this. So I'm not as much in need of advice on how to keep my spirits up, etc.
I am able to hold down a 40 hour job, for barely above minimum wage, but often that's about all I can manage. On days off, I try to accomplish things, but can often measure 'success' in terms of 'I ate something, a got out of bed, I fed the cats, I did the dishes'. I struggle with cleaning, cooking, dealing with trash and laundry, repairs, hygiene, anything beyond basic life needs (car the the mechanic, phone calls, shopping, any sort of hobby).
A lot of this could be solved by hiring someone, but I just don't have the money. I've put some money into things like buying more expensive premade meals rather than cooking, using disposable dish ware so I don't have to wash, delivery of a few things so I don't have to shop as much. I'm also desperately trying to save enough to move.
I'm trying to consider myself lucky because I can hold down a steady job and take care of my cats, but every day when I get home to my messy house/pile of things needing to be done and eat another frozen meal, I feel worse and worse.
Is there a way that you can get a better job? One that pays more, or has more flex hours, or something. I wish you had enough extra money to hire cleaners. I wish you had enough extra time that you could work from home and do dribs and drabs of cleaning or run errands during your working day. These things would improve your life tremendously.
posted by crazycanuck at 5:33 PM on February 25, 2019 [1 favorite]
posted by crazycanuck at 5:33 PM on February 25, 2019 [1 favorite]
I do not live alone but I have a chronic illness and have been through periods where I had little to no help with all the things you mention plus parenting. Here are some things that have helped me.
Minimizing items so there's less to clean/put away has been one of the best things. Fewer things to lose, fewer kitchen tools to track, fewer clothes means lighter loads to carry.
I only buy machine washable items. I often just put work clothes back on hangers when I get home. Those that I need to wash, when I dry them I try to at least stack them neatly or fold them so they don't get wrinkled. Then I can put them away eventually or dress right out of the basket without looking like I did.
I bought this to keep in my kitchen: stool
It's been so very helpful for dinner time and kitchen cleanup. We are in a rental unit and roaches become a problem if we let the kitchen go so this helps manage the spoons needed to close the house at days' end.
Meal prep using the instant pot, storing single serve cooked meal components in the freezer. I just do not cook on weekdays. I save it for 3 hours or so on Sunday. Personally I don't mind eating prepared food. If it's homemade from the weekend great, but if someone else made it whatever. I do try to eat an anti-inflammatory diet for medical reasons but beyond that I decided I can't be too picky.
I do grocery pick up or delivery. If I did not have this, I would probably be buying more from Amazon, walmart.com, Boxed or similar. And would try to pick off peak hours for produce shopping to avoid standing in line longer than necessary.
I am in online support groups for my illnesses which can help with creative problem solving and commiseration.
Finding a way to cut your expenses would be helpful. Do you rent or own? Can you take on a roommate? Or even offer free room and board for cooking, cleaning and errands? If you try to do the latter be sure you look into how to create such a contract to protect your interests.
If you have a public library go and learn as much as you can about lifestyle and nutritional solutions for symptom management. I learned by accident that massive doses of vitamin D tend to reduce my flares. I imagine there's other information for preventative things that might save you money and hassle in the long run.
And honestly depending on where you live, this is a big part of what the church is for. They take care of the sick. If all else fails you might want to reconsider your ban on religious groups. In my experience the Methodists help without proselytizing the way the Baptists do. I suspect plenty of people go through the motions of local religion because they lack social support otherwise.
Hang in there. Memail me if you want to vent.
posted by crunchy potato at 5:59 PM on February 25, 2019 [10 favorites]
Minimizing items so there's less to clean/put away has been one of the best things. Fewer things to lose, fewer kitchen tools to track, fewer clothes means lighter loads to carry.
I only buy machine washable items. I often just put work clothes back on hangers when I get home. Those that I need to wash, when I dry them I try to at least stack them neatly or fold them so they don't get wrinkled. Then I can put them away eventually or dress right out of the basket without looking like I did.
I bought this to keep in my kitchen: stool
It's been so very helpful for dinner time and kitchen cleanup. We are in a rental unit and roaches become a problem if we let the kitchen go so this helps manage the spoons needed to close the house at days' end.
Meal prep using the instant pot, storing single serve cooked meal components in the freezer. I just do not cook on weekdays. I save it for 3 hours or so on Sunday. Personally I don't mind eating prepared food. If it's homemade from the weekend great, but if someone else made it whatever. I do try to eat an anti-inflammatory diet for medical reasons but beyond that I decided I can't be too picky.
I do grocery pick up or delivery. If I did not have this, I would probably be buying more from Amazon, walmart.com, Boxed or similar. And would try to pick off peak hours for produce shopping to avoid standing in line longer than necessary.
I am in online support groups for my illnesses which can help with creative problem solving and commiseration.
Finding a way to cut your expenses would be helpful. Do you rent or own? Can you take on a roommate? Or even offer free room and board for cooking, cleaning and errands? If you try to do the latter be sure you look into how to create such a contract to protect your interests.
If you have a public library go and learn as much as you can about lifestyle and nutritional solutions for symptom management. I learned by accident that massive doses of vitamin D tend to reduce my flares. I imagine there's other information for preventative things that might save you money and hassle in the long run.
And honestly depending on where you live, this is a big part of what the church is for. They take care of the sick. If all else fails you might want to reconsider your ban on religious groups. In my experience the Methodists help without proselytizing the way the Baptists do. I suspect plenty of people go through the motions of local religion because they lack social support otherwise.
Hang in there. Memail me if you want to vent.
posted by crunchy potato at 5:59 PM on February 25, 2019 [10 favorites]
You may want to contact the National Disability Rights Network agency in your state to find out more about benefits that you may qualify for and how to access them. In the Employment section of the NDRN website, it talks about how they offer services to people who want to know more about possible benefits to help get or keep a job.
It sounds like you might qualify for Vocational Rehabilitation services in your state, and it could be a path to a better job and/or training and financial assistance. Medical evidence may be needed to qualify for a variety of services and benefits, but Voc Rehab may have resources to help with the medical costs to help determine your eligibility.
In addition, a community health worker may be able to assist with access to health care, and the National Provider Identifier Database can be searched to find community health workers in your state.
posted by Little Dawn at 6:05 PM on February 25, 2019 [2 favorites]
It sounds like you might qualify for Vocational Rehabilitation services in your state, and it could be a path to a better job and/or training and financial assistance. Medical evidence may be needed to qualify for a variety of services and benefits, but Voc Rehab may have resources to help with the medical costs to help determine your eligibility.
In addition, a community health worker may be able to assist with access to health care, and the National Provider Identifier Database can be searched to find community health workers in your state.
posted by Little Dawn at 6:05 PM on February 25, 2019 [2 favorites]
Have you already contacted your state or national organizations related to your condition for support/resources/programs? Are there any governmental programs that may help? Perhaps if you share your condition and/or location, people will be able to pinpoint resources more accurately.
Is it at all possible that there’s a better treatment or way of managing symptoms for you / options the doctors you’ve seen have missed?
Would you consider *temporarily* sharing accommodation to cut down on fixed monthly costs? Maybe you could find someone who’s not interested in chit-chat and enjoys privacy as much as you do. Maybe they could pitch in with chores for a slightly better deal than they’d otherwise get re rent?
What specifically are the challenges - general fatigue I get, are there other things (like is cookware too heavy, etc)?
posted by cotton dress sock at 6:29 PM on February 25, 2019 [1 favorite]
Is it at all possible that there’s a better treatment or way of managing symptoms for you / options the doctors you’ve seen have missed?
Would you consider *temporarily* sharing accommodation to cut down on fixed monthly costs? Maybe you could find someone who’s not interested in chit-chat and enjoys privacy as much as you do. Maybe they could pitch in with chores for a slightly better deal than they’d otherwise get re rent?
What specifically are the challenges - general fatigue I get, are there other things (like is cookware too heavy, etc)?
posted by cotton dress sock at 6:29 PM on February 25, 2019 [1 favorite]
If you are willing to let us know where you live, even roughly, people may be able to offer more concrete or direct advice and assistance.
posted by turbid dahlia at 6:41 PM on February 25, 2019
posted by turbid dahlia at 6:41 PM on February 25, 2019
I have a chronic illness and am in my thirties and single. It’s hard, and I understand how you feel.
Online support groups have provided me with a lot of the social support you mention, and research demonstrates that lurkers in online support groups experience many of the same benefits as active participants. So you don’t necessarily have to comment to get supportive benefits (this is partly because of how social support works; it’s not just about concrete, enacted support but is also about the perception of community).
Also, I mean this kindly, but you sound depressed on top of your chronic illness. Depression is often co-morbid with chronic illnesses, so this is not terribly surprising, but it is likely making your situation even harder. Have you thought about seeing a therapist or psychiatrist to talk about how you are feeling emotionally?
Take care. It is really difficult to be chronically ill and living alone as an adult.
posted by sockermom at 7:11 PM on February 25, 2019 [5 favorites]
Online support groups have provided me with a lot of the social support you mention, and research demonstrates that lurkers in online support groups experience many of the same benefits as active participants. So you don’t necessarily have to comment to get supportive benefits (this is partly because of how social support works; it’s not just about concrete, enacted support but is also about the perception of community).
Also, I mean this kindly, but you sound depressed on top of your chronic illness. Depression is often co-morbid with chronic illnesses, so this is not terribly surprising, but it is likely making your situation even harder. Have you thought about seeing a therapist or psychiatrist to talk about how you are feeling emotionally?
Take care. It is really difficult to be chronically ill and living alone as an adult.
posted by sockermom at 7:11 PM on February 25, 2019 [5 favorites]
I do not live alone but my partner is also chronically ill so often can't help out much. Everyone else has the more systemic stuff covered, so here are my hacks/daily life stuff (I have dysautonomia, so most of this centers around fatigue and brain fog):
- Disposable dishes and paper towels as plates whenever I can, for the things I can't make disposable I rinse out/wipe out any food as soon as I use them so they can sit in the sink for a lot longer without smelling so they can be done all at once on a higher energy day. Silverware, if I didn't use something super oily or highly flavorful on it, then I'll rinse it (ex: spoon I stirred my tea with) or wipe it off with a paper towel (ex: knife I buttered toast with) and set it next to the sink so I can use it again the next time I need to stir my tea or butter my toast.
- Stool in the kitchen to sit on while I'm waiting for things to cook. While things are cooking, I wipe off the counters with a damp paper towel or wash a dish or two, although this works because my kitchen is so tiny I can reach everything from my stool so YMMV.
- I only shower 3 times a week. I can get away with this because part of my condition means I sweat less than I'm supposed to so again, YMMV. But if you can get away with skipping days, it can conserve some energy. There's baby wipes and dry shampoo for the days in between. Also, a shower stool can really help.
- I organize my to-do list by effort. I've used a variety of digital to-do apps, anything with tags or categories will work. I tag things either: high mental effort, high physical effort, high social effort, or low effort. Days I have more energy I tackle the high energy things. Some days I'll find I have low physical energy but high mental energy, or have a lot of both but am not up to being social, so that's what those tags differentiate. Days when I'm just all around low energy is when I do the low effort tasks. Without that organization, I would spend days where I had a lot of energy doing a bunch of little low effort things, which feels good because yay crossing off so many things!! Except I could have done those on a low energy day, and those high energy things get ignored. On my days off, I specifically tackle the high energy items. The rest of the week, I just try and get some of the low effort stuff done.
- I have a morning and evening routine, and put picking up things in x area on that list. It's a lot harder to get up and deep clean a whole area. But if I'm already in the bathroom to brush my teeth, it's easier to pick up the dirty clothes I left from my shower and take them to the hamper on my way to bed. Same with cleaning counters while eating, or grabbing any empty cups/dishes from the living room when I'm done eating breakfast and need to get up to fill up my water bottle anyway. It's a lot harder to get up and do a big task than to do a little chunk of it while I'm doing something else.
- I keep basically everything I could need in my purse. Partially to be prepared outside of the house, but also so I can just put it next to me when I sit down at home and then not have to get up when I need: kleenex, lotion, tylenol, a phone charger, chapstick, headphones, earplugs, etc. Limiting the amount of times I get up and down for minuscule things leaves me more energy to get up and do more important things.
I asked my partner for their suggestions, and they add:
- For food that doesn't come off easily, leave dishes to soak (apparently a lot of people don't do this?) to reduce the amount of scrubbing you have to do.
- If you can afford it, buy food that comes preportioned (baby carrots in little packages, individual hummus cups, etc.). Sometimes it's too hard to even portion yourself out food that you already have, but if it's already meal-sized you can just grab it without worrying about having to portion it out or get up again to put the rest of it away.
- Precooked chicken is a lifesaver (you can find it in packages or in salad bars). It cuts down on a lot of the cooking effort/time and can be thrown in pasta or rice or with vegetables. Even just eating it on its own with snacky food makes it feel more like a meal and gives you some protein.
- Wherever you spend most of your time (your bed, the couch, a desk), keep a tupperware box for your dishes so that you can take all of it to the kitchen at once at the end of the day instead of getting up and down a bunch.
- Try and find meals you can throw together pretty easily without a ton of prep work. Our go to meal is off the back of a Campbell's can: pasta, precooked chicken, mushrooms if we happened to grab them, and a can of Campbell's chicken and mushroom soup. It's really quick, and if you're living alone would probably make three or four meals. If you can tolerate eating the same thing a bunch of times in a row (my partner can't, I can), when you do manage to cook try and make enough to have a bunch of leftovers. Usually just doubling the recipe takes a lot less effort than making the same meal twice.
- If you have trouble convincing yourself to get up and eat (my partner does), it can help to have little tasty snacks around to eat with your meal to convince you to make something. My partner keeps cookies around because when're struggling to convince themselves to get up and eat, they aren't going to just eat a cookie because then they'll feel worse, but if they can have a cookie with their meal they're more motivated to make something, even if it's just a ham sandwich.
Finally, from both of us, the most important thing is recognizing that this is really fucking hard, and sometimes just getting up and feeding yourself and your cats and doing the dishes is an accomplishment! I know it sucks when you planned to do so much more, but I've had days where I don't even manage what you've described, and acknowledging that as success is important. You're doing the most important stuff. A lot of people can't claim that. So if your house doesn't look like it's out of a home magazine, or you're not cooking fresh meals for yourself every night, or if you put off xyz for a little longer... that's okay. It's also okay to want to do better, I'm not saying you need to give up and be satisfied with never doing more than that. Just remember to be gentle with yourself, and appreciate where you are.
posted by brook horse at 7:27 PM on February 25, 2019 [7 favorites]
- Disposable dishes and paper towels as plates whenever I can, for the things I can't make disposable I rinse out/wipe out any food as soon as I use them so they can sit in the sink for a lot longer without smelling so they can be done all at once on a higher energy day. Silverware, if I didn't use something super oily or highly flavorful on it, then I'll rinse it (ex: spoon I stirred my tea with) or wipe it off with a paper towel (ex: knife I buttered toast with) and set it next to the sink so I can use it again the next time I need to stir my tea or butter my toast.
- Stool in the kitchen to sit on while I'm waiting for things to cook. While things are cooking, I wipe off the counters with a damp paper towel or wash a dish or two, although this works because my kitchen is so tiny I can reach everything from my stool so YMMV.
- I only shower 3 times a week. I can get away with this because part of my condition means I sweat less than I'm supposed to so again, YMMV. But if you can get away with skipping days, it can conserve some energy. There's baby wipes and dry shampoo for the days in between. Also, a shower stool can really help.
- I organize my to-do list by effort. I've used a variety of digital to-do apps, anything with tags or categories will work. I tag things either: high mental effort, high physical effort, high social effort, or low effort. Days I have more energy I tackle the high energy things. Some days I'll find I have low physical energy but high mental energy, or have a lot of both but am not up to being social, so that's what those tags differentiate. Days when I'm just all around low energy is when I do the low effort tasks. Without that organization, I would spend days where I had a lot of energy doing a bunch of little low effort things, which feels good because yay crossing off so many things!! Except I could have done those on a low energy day, and those high energy things get ignored. On my days off, I specifically tackle the high energy items. The rest of the week, I just try and get some of the low effort stuff done.
- I have a morning and evening routine, and put picking up things in x area on that list. It's a lot harder to get up and deep clean a whole area. But if I'm already in the bathroom to brush my teeth, it's easier to pick up the dirty clothes I left from my shower and take them to the hamper on my way to bed. Same with cleaning counters while eating, or grabbing any empty cups/dishes from the living room when I'm done eating breakfast and need to get up to fill up my water bottle anyway. It's a lot harder to get up and do a big task than to do a little chunk of it while I'm doing something else.
- I keep basically everything I could need in my purse. Partially to be prepared outside of the house, but also so I can just put it next to me when I sit down at home and then not have to get up when I need: kleenex, lotion, tylenol, a phone charger, chapstick, headphones, earplugs, etc. Limiting the amount of times I get up and down for minuscule things leaves me more energy to get up and do more important things.
I asked my partner for their suggestions, and they add:
- For food that doesn't come off easily, leave dishes to soak (apparently a lot of people don't do this?) to reduce the amount of scrubbing you have to do.
- If you can afford it, buy food that comes preportioned (baby carrots in little packages, individual hummus cups, etc.). Sometimes it's too hard to even portion yourself out food that you already have, but if it's already meal-sized you can just grab it without worrying about having to portion it out or get up again to put the rest of it away.
- Precooked chicken is a lifesaver (you can find it in packages or in salad bars). It cuts down on a lot of the cooking effort/time and can be thrown in pasta or rice or with vegetables. Even just eating it on its own with snacky food makes it feel more like a meal and gives you some protein.
- Wherever you spend most of your time (your bed, the couch, a desk), keep a tupperware box for your dishes so that you can take all of it to the kitchen at once at the end of the day instead of getting up and down a bunch.
- Try and find meals you can throw together pretty easily without a ton of prep work. Our go to meal is off the back of a Campbell's can: pasta, precooked chicken, mushrooms if we happened to grab them, and a can of Campbell's chicken and mushroom soup. It's really quick, and if you're living alone would probably make three or four meals. If you can tolerate eating the same thing a bunch of times in a row (my partner can't, I can), when you do manage to cook try and make enough to have a bunch of leftovers. Usually just doubling the recipe takes a lot less effort than making the same meal twice.
- If you have trouble convincing yourself to get up and eat (my partner does), it can help to have little tasty snacks around to eat with your meal to convince you to make something. My partner keeps cookies around because when're struggling to convince themselves to get up and eat, they aren't going to just eat a cookie because then they'll feel worse, but if they can have a cookie with their meal they're more motivated to make something, even if it's just a ham sandwich.
Finally, from both of us, the most important thing is recognizing that this is really fucking hard, and sometimes just getting up and feeding yourself and your cats and doing the dishes is an accomplishment! I know it sucks when you planned to do so much more, but I've had days where I don't even manage what you've described, and acknowledging that as success is important. You're doing the most important stuff. A lot of people can't claim that. So if your house doesn't look like it's out of a home magazine, or you're not cooking fresh meals for yourself every night, or if you put off xyz for a little longer... that's okay. It's also okay to want to do better, I'm not saying you need to give up and be satisfied with never doing more than that. Just remember to be gentle with yourself, and appreciate where you are.
posted by brook horse at 7:27 PM on February 25, 2019 [7 favorites]
7cups is an online conversation site/app run by volunteers with training to provide basic listening and counseling for people struggling. My teen used it briefly as a resource during a hard patch and I've seen it recommended on mefi as well.
I really like the cooking is terrible ebook. Memail me and I'll get you a copy. It was written for people with chronic illnesses who are just too tired to cook but need a healthy-ish meal and has sensible advice and easy fixes and recipes. It got me eating more than just cereal when I was exhausted.
Do your house so it's easy. Do it room by room over a month. You can marie kondo or just declutter or whatever suits you. But clear out stuff and sit in each space and think about how you clean it. How can you make that easier without spending money? Get rid of the decorative rug you have to vacuum? Put away stuff you dust but ignore the rest of the time? Put a small container out cleaning things under the table so you don't have to go back to the other room repeatedly? Minimize your cleaning.
You sound organized already although handling a lot. Having a monthly schedule will probably help with cleaning. I can't do a weekly schedule because I'd miss days but I can get to big things once a month, and if I do other things daily them skipping a day here and there is ok. Weekly schedules just suck for me.
I also don't like social groups that need weekly attendance for that to. Church is a struggle already, and so I stick to more drop-in schedules or monthly type things where I can rest up in advance. If you need recovery time from physical and social activities, you should probably look for online groups with a monthly or occasional meet ups. Cat rescue volunteering? Other hobby groups?
If you are definitely moving, it's a good time to reach out by email to old friends and just say hi. Or Facebook/Instagram whatever your agegroup circle does.
I had to rebuild my social circle about 5 years ago and it was/is a strange process as a now sick person. I made myself call people who were friendly up and ask them out for coffee and proportionally out of 5, 3 would be too busy now I was sick, 1 would be super nice at coffee and then vanish uncomfortable afterwards and 1 would be closer. I have 4 friends I could call if I am in hospital now and they would come, and some other pretty good friends but those four in RL are crisis friends. It took years and a lot of effort though. You can find your people -I did not expect the four to be these four women at all - but it takes time and vulnerability and rejection (by 16 friends! Some who have just vanished completely.)
Frankly, the friendship part was the hardest. Food and cleaning are practical things. Having someone to chat to and cheer you up and having someone your presence cheers up, where you get to give them friendship and be wanted for your company, is so nice.
So value the smaller friendships too. You might not have hospital crisis friendships yet but do you have a pleasant work buddy? Someone you exchange forum notes with? Think how big your social network past and present is and you could revive some of those friendships and deepen them.
posted by dorothyisunderwood at 7:51 PM on February 25, 2019 [2 favorites]
I really like the cooking is terrible ebook. Memail me and I'll get you a copy. It was written for people with chronic illnesses who are just too tired to cook but need a healthy-ish meal and has sensible advice and easy fixes and recipes. It got me eating more than just cereal when I was exhausted.
Do your house so it's easy. Do it room by room over a month. You can marie kondo or just declutter or whatever suits you. But clear out stuff and sit in each space and think about how you clean it. How can you make that easier without spending money? Get rid of the decorative rug you have to vacuum? Put away stuff you dust but ignore the rest of the time? Put a small container out cleaning things under the table so you don't have to go back to the other room repeatedly? Minimize your cleaning.
You sound organized already although handling a lot. Having a monthly schedule will probably help with cleaning. I can't do a weekly schedule because I'd miss days but I can get to big things once a month, and if I do other things daily them skipping a day here and there is ok. Weekly schedules just suck for me.
I also don't like social groups that need weekly attendance for that to. Church is a struggle already, and so I stick to more drop-in schedules or monthly type things where I can rest up in advance. If you need recovery time from physical and social activities, you should probably look for online groups with a monthly or occasional meet ups. Cat rescue volunteering? Other hobby groups?
If you are definitely moving, it's a good time to reach out by email to old friends and just say hi. Or Facebook/Instagram whatever your agegroup circle does.
I had to rebuild my social circle about 5 years ago and it was/is a strange process as a now sick person. I made myself call people who were friendly up and ask them out for coffee and proportionally out of 5, 3 would be too busy now I was sick, 1 would be super nice at coffee and then vanish uncomfortable afterwards and 1 would be closer. I have 4 friends I could call if I am in hospital now and they would come, and some other pretty good friends but those four in RL are crisis friends. It took years and a lot of effort though. You can find your people -I did not expect the four to be these four women at all - but it takes time and vulnerability and rejection (by 16 friends! Some who have just vanished completely.)
Frankly, the friendship part was the hardest. Food and cleaning are practical things. Having someone to chat to and cheer you up and having someone your presence cheers up, where you get to give them friendship and be wanted for your company, is so nice.
So value the smaller friendships too. You might not have hospital crisis friendships yet but do you have a pleasant work buddy? Someone you exchange forum notes with? Think how big your social network past and present is and you could revive some of those friendships and deepen them.
posted by dorothyisunderwood at 7:51 PM on February 25, 2019 [2 favorites]
This may sound odd, but one thing I've found comforting is reading books written in a 1st person point of view. Maybe it's because I really feel like I'm in the narrator's head, so it feels more intimate.
Also, I use a cheap coat rack to hang up lightly used clothes that can stand another wearing, and don't need to go into the hamper.
posted by invisible ink at 12:00 AM on February 26, 2019
Also, I use a cheap coat rack to hang up lightly used clothes that can stand another wearing, and don't need to go into the hamper.
posted by invisible ink at 12:00 AM on February 26, 2019
If you are unable to deal with the mess in your house (and I say that with zero judgement, I promise!) and you don't have the money to hire help (and I also promise you that I get broke), then in my experience the best thing you can do for yourself is get rid of all of the stuff. It's less overwhelming to do laundry when you only have three winter outfits and three summer outfits. It's less overwhelming to clean the house when you are just hoovering around one sofa, one chair, one side table and a lamp. Is Freecycle or donation pickups a possibility in your area?
I am still unable to deal with mail and bills but probably some kind of online accountability buddy system for that would be a thing?
posted by DarlingBri at 3:41 AM on February 26, 2019
I am still unable to deal with mail and bills but probably some kind of online accountability buddy system for that would be a thing?
posted by DarlingBri at 3:41 AM on February 26, 2019
If you are in the US, get in contact with your state's Department of Human Services. They will have a program for people with disabilities to get assistance. Check out what your options are and see if you can get some PCA hours - help with cleaning, shopping, meal prep, that kind of thing.
posted by bile and syntax at 5:54 AM on February 26, 2019 [3 favorites]
posted by bile and syntax at 5:54 AM on February 26, 2019 [3 favorites]
This thread is closed to new comments.
The Y is a great resource; my local one offers a sliding scale membership/scholarships so anyone can join. It's a really welcoming place where people of all ages, sizes, gender identities, and more can come and work out, take a class, participate in a program. Even if you just went once a week it might help you make some connections and exercise (if you can handle it) has great mental health benefits.
Maybe there's a buy-nothing group in your area or a freecycle group where you can find things to help you stay organized. I know that if I'm not up for folding laundry, but I can put it somewhere other than a pile on my couch things at least feel cleaner/more organized.
And while hospitals can't offer you anything I would research whether or not you can get an appointment with a social worker through your county or state, that person might be able to point you to resources you don't realize exists.
posted by brookeb at 4:58 PM on February 25, 2019 [4 favorites]