Coming to Terms with Chronic Illness
April 29, 2016 8:41 AM   Subscribe

Although I've been diagnosed with a chronic illness for 20 years and have been totally disabled by it for 3 years, I'm just now coming to the realization that every facet of my life has changed.

My house is a wreck, and I have to understand that i WONT feel better in a week to get it all caught up, my larder is completely empty and i have to understand that i WONT feel better in a week or get it all caught up, etc. etc.

I live alone, no family and/or friends live nearby, so I am basically on my own. I still drive, and I can go out shopping if its a "good" day, but I can't count on that good day, predict when it is coming, and generally after a day out, I have 3 or 4 "bad" ones to recuperate.

Unflagging, constant, mind numbing fatigue is the biggest symptom that bugs me and the one I struggle with feeling the most guilt for, i.e., "if i could just try harder, I would be able to do more." This causes me a lot of stress, which is bad for my illness, which causes me more stress, etc, etc.

My question is for those who know where I'm coming from, how do you/did you arrange your life so that you could cope? I'm looking for hacks, as well as different ways of thinking, books, anything really that has helped you reach some sort of equilibrium with your chronic illness, as well as keeping the daily cruft of life (food, shelter, etc) manageable.

If it matters, my illness is rheumatoid arthritis overlapped by chronic fatigue syndrome.

(And yes, I am well familiar with the spoon theory, but what if most days you have only a couple of spoons? and way more things that need to done than spoons?}
posted by anonymous to Health & Fitness (22 answers total) 25 users marked this as a favorite
Can you afford to get groceries delivered? If your city doesn't have grocery delivery, could you afford Amazon Prime for nonperishables and household items?
posted by showbiz_liz at 8:54 AM on April 29, 2016 [1 favorite]

First of all, I'd hire someone to come in and clean my digs. Your illness just won't let you get it together to do that. Don't let shame or pride keep you from letting a stranger in to take care of what you're too sick to do. Then have someone in every couple of weeks to take care of it for you.

Send your laundry out for fluff and fold. (unless you have a washer in your unit.)

Find a grocery delivery service and have your groceries delivered.

I'm more concerned about social isolation. Can you move closer to friends and family? Not for physical help with your daily life, but for social interaction which is SO important to someone with a chronic illness!

Find out what benefits you're entitled to. You may get a home-health-aide who can help with cleaning, shopping and other daily living activities.

I know this seems like a HUGE hill to climb with your illnesses, but getting just one person on board to help get the ball rolling.

There are things you just can't do anymore. It absolutely sucks, but squaring away your physical environment will make a HUGE impact on your mental state and on your overall health.

Good luck to you!
posted by Ruthless Bunny at 9:00 AM on April 29, 2016 [4 favorites]

Man, it's not easy. I have psoriatic arthritis that has been, over the last couple years, about 50/50 good days/bad days, although not conveniently alternating or anything. Things that have helped:

- Keeping my schedule super-loose. I don't plan stuff that I can't do on a bad day very often, and when I schedule it I often do it with the understanding that I may need to plan a course of prednisone around it. (I'm currently on it because I went on *gasp* vacation last weekend. Nothing physical, but lack of sleep and lots of restaurant food are near-guarantees of a flare.)

- Lowering my standards. I had a hard conversation with my fiancee that if she wanted the house cleaner than it was, we were going to need to bring in a maid more often. I can sometimes clean with the best of them, and sometimes doing the dishes is an unrealistic plan. It's not fair to her to expect her to shoulder all that, and I'm still working, so we spend the money, and otherwise we shoot for not-smelly.

- Figuring out patterns. When the arthritis first got bad, I spent a month or so logging *everything* - food, over-the-counter meds, sleep, activity, etc. I did an elimination diet (hey, gluten!) and tracked my multi-day response to exercise when I could exercise at all (weightlifting=mostly fine, karate=hard no, walking=on better days, etc.) When the patterns seem to change (eggs? really? EGGS make me flare now?) I repeat the bit of the process I need to. It helps.

- Automating everything I can. The cat food gets delivered (it's actually cheaper that way in the end,) and at various points I've had staples/meat/produce delivered. Bills get paid automatically. Amazon ships damn near everything to damn near everyone. I found a line of clothing that consistently fits and I order it online. Etc etc.

- I have a really good rheumatologist, which is three-quarters luck because I happen to live near a major hospital system and have very solid insurance, but for years I tried to treat it, on my GP's advice, with just prednisone. This didn't work all that well - nothing else has been a 100% fix, but the current biologic actually might be helping, so there's that.

Much of this is dependent on the fact that the household has enough money to replace some of my lost spoons, which is a luxury you may not have, but the principle is generally that when I do have a good day, instead of just frantically catching up, I look at the undone tasks and take a minute to think about what I could do now to make that task doable when I feel terrible. Because the baseline for me has to be "feeling terrible" - a "feeling fine" baseline slipped away a couple years ago.
posted by restless_nomad at 9:17 AM on April 29, 2016 [11 favorites]

Apologies if you've looked into this, but does your community have any resources that can help you? Is there a social work department in a hospital near you or a social worker your doctor can refer to you? A center for disabled people? Is there potential for involvement with a faith community? Are you connected to a therapist (many are willing to do Skype nowadays, so you can have a session without leaving the house)? Your not having friends or family nearby concerns me - if you are socially isolated, that's not beneficial to your health or your life in general. I think that developing some sort of social network would make your other struggles seem more tolerable. Maybe this would be something to prioritize on one of your good days. I know that doing anything at all can seem overwhelming to you, but having some sort of community would be invaluable. You should not have to deal with this alone.
posted by FencingGal at 9:37 AM on April 29, 2016

I'm kinda embarrassed by how often I recommend it, and I know all the cool kids are into Unfuck Your Habitat, but Fly Lady really helped me start hacking at cleaning during a very low time.

I totally get what you mean about chronic illnesses though. Yesterday was a bad day for me, realizing that I'm simply not a candidate for the one thing that might help, and that this is probably going to continue indefinitely so I might as well plan around it instead of viewing all my accommodations as temporary. Today I'm feeling a bit better about that, since it relieves me of the burden of thoughts like, "You're still using that? I thought it was short-term." It also has set me to thinking along the lines of your question, wondering what might possibly help. I'm going to get serious about taking my various supplements every day, instead of every day I remember, and I got off my "no pain management plan; I want a cure" high horse and asked my doctor for meds. Stuff like that. Even if I only do one such thing a day, or a week, over time they'll aggregate and hopefully life will be easier. (Sorry I don't have more actual advice; this would have been a "solidarity!" memail if you weren't anon.)
posted by teremala at 9:46 AM on April 29, 2016

I've traded money for help, when I can afford it, ala what Ruthless Bunny suggests above.

Breaking things into much tinier tasks than most people would have to helps also. Put clothes in washer. Rest several hours. Put clothes in dryer. Rest several hours. Fold clothes. etc. If your clothes aren't the sort that need to be immediately removed from the dryer, you can even leave it in there until the next day. You don't have to go fast on anything. It's ok to be super, super slow. I like to pretend I am Cinderella and that moving slow is my way of getting back at my evil stepmother.

IF you can cook but shopping is killer, I've really liked HelloFresh. It also means I don't have to menu plan as much. Then for the meals that doesn't cover for me, I do a lot of really, really simple pantry stuff that Amazon deliveries would pretty much cover.

As I notice patterns, like reckless nomad, I try and help Future_Extra_Sick_Me by doing things I know will make that easier. (Like laying out clothes the night before or cooking a little extra and freezing it for a bad day.)

I had a sports specialist say to me once that I could do anything I wanted as long as I was willing to pay the cost on my body, so that helps sometimes. Sometimes I am able to pay the cost and sometimes I give myself permission to pay the cost for other things I did by sitting very still and quietly for a while and taking lots of naps.

I have fibromyalgia, which I know isn't the same thing, but I still know from too tired to move or do anything, so I empathize.
posted by eleanna at 9:52 AM on April 29, 2016 [2 favorites]

Read Marie Kondo's stuff about decluttering. Some of is is a little woo-woo (I do not believe that my shoes have feelings and will feel better if I properly thank them for their work) but reading her books made me realize that there is a lot less a person needs to do around the house than I thought. For example, my mother has a table whose sole function is to hold picture frames. Get rid of the picture frames, and all the work of caring for that table goes with it. It may take you a long time to prune your stuff. That's okay. Just get a box. Put things in it when you can. Then call one of those donation agencies to come and take it away.

Even chores are negotiable. I hosted a party last weekend and for two weeks before, I was saying I really must wash the tablecloth before the party. For reasons, I did not get to it. Nobody noticed. The party was great. I did not do this chore I admittedly should have done and nothing happens to me at all.

My husband has a disability and I definitely am a fan of solving household issues with money. We have a standing agreement that if ever I say the word, he'll get a house cleaner without hesitation.
posted by JoannaC at 10:02 AM on April 29, 2016 [2 favorites]

I've had Crohn's Disease for 20 years, and I empathize thoroughly.

The concept that has help me most in dealing with my inadequacies due to disease is the cognitive load theory. It was conceptualized to explain why students who are discriminated against learn at a slower rate than their non-discriminated peers, but it has helped me rationalize why some days/months/years I am just less productive than healthy individuals in my cohort. Somehow it comforts me to have a model to explain to myself that my mental energy is not being wasted, it's just being redirected to constantly check in on what the origin of that ache might be/where my pain level is compared to an hour ago/have i taken my drugs today. I think it translates to physical energy more completely than the spoon theory. (why spoons, anyway? i never understood that. no one needs lots of spoons.)

More specifically, I do these things:
* If I order food, I order twice as much so I can eat leftovers for days.
* Amazon Prime is expensive, but damn if it's not great to know that I don't have to remember to order toothpaste/olive oil/soap/dog food every month.
* most insurances have an option to set up all your drugs to automatically refill every three months and be sent by mail. it's cheaper, somehow, and you won't have to remember to do it.
* I gave up on house cleaning. I don't exactly live in a sty, but my mom would definitely not approve. I keep the front room presentable and I do laundry regularly, but nothing else really matters. No one cares that your bathroom mirror has had spots for 6 months. My kitchen counter is full of things, but that just means I never have to open a cabinet. Twice a year I feel good enough to scrub everything down and I do, but my life is too short to clean more often. It's been a long road to get comfortable with my slovenliness, but it's been worth it.
posted by bravecanary at 10:13 AM on April 29, 2016 [10 favorites]

I have chronic pain, and this workbook on Acceptance and Commitment Therapy (recommended by my CBT therapist) has been very helpful
posted by radioamy at 10:18 AM on April 29, 2016 [2 favorites]

I still drive, and I can go out shopping if its a "good" day, but I can't count on that good day, predict when it is coming, and generally after a day out, I have 3 or 4 "bad" ones to recuperate.

Speaking from CFS experience, this is not a good way to live. You need to live within the energy envelope of what you can do in a day. If one day out leaves you with 3-4 bad days to recuperate, you did too much on the good day. That totally sucks, especially when that too much is actually quite little, but that's the reality you have to accept. You need to set up your life so that you don't end up going all out on those good days doing a whole bunch of errands and then end up spending multiple days recovering. All the things that people mention above (grocery delivery, ordering online, ordering food, cleaning and laundry services) can help if you can afford them.

Then, when you do have a good day, you can do things you really want to do, not just chores - and you'll spend less time recovering and have more good days. A fitness tracker like a Fitbit can help you make sure you are keeping your heart rate down, i.e. not over exerting yourself.
posted by ssg at 10:27 AM on April 29, 2016 [4 favorites]

Do you actually have any extra spare cash? A lot of these answers are predicated on the idea that you are middle-class+ earner, and that is often not the case for people with disabilities.

I am sick and broke. Things that help me:

-- neighbours, friends, family. I have no shame in asking for help. I can't drive my boyfriend today; a neighbour's picking him up. I couldn't pick up a prescription today; I asked on Facebook if anybody was going from there to here, a friend just dropped off my medication. Yesterday some family members came over to help with a home repair. When I am up to it I repay them with home cooking (this requires saving up "spoons" -- I do it en masse, make heavy use of a chest freezer, and everybody gets identical dishes at the same time), and small parties -- last weekend I spent some money on mini-kegs and cheap wine, and had a bunch of people who'd helped us out this year over for free booze in my yard. Yes, I know you mentioned being basically on your own. Having others able and willing to help out is so vital to our (I have a kid) continued ability to survive that I would prioritise changing that. Move if you need to. Reach out anywhere and everywhere possible.

-- barter. Offer whatever services you can -- this might tie in nicely with meeting new people. You drive to get groceries etc? Find out if there is somebody near you who is good with yard care but doesn't have a car; make a mutually beneficial arrangement there -- stuff like that.

-- I don't care if other people could get X, Y, and Z done in a day. If I get X partially done, it is a good day for me because I got X partially done. Never use healthy folk as your metric for what you "should" be able to do or what is "normal." You are trying as hard as you can; if it was true that you could just try harder, that would have happened. It's not true. Make your peace with that.

-- mail-order absolutely everything you can. I'm in Canada and our dot-ca shopping is kind of where the US' was at the turn of the century, but there're still some things. brings toilet paper, cat litter, juices, anything I don't want to lug to my porch. Clothing, cleaning supplies, office what-not, tech junk, it all gets mail-ordered.

-- chest freezer, massive cooking vessels (pressure cookers are wonderful; it means less time standing around), freezer containers -- I don't cook much unless I can make a huge number of servings of it to freeze for later. (I freeze stuff in cheap silicone muffin trays and pop out the little pucks into freezer bags, and compose my meals from assorted "pucks.")

-- beware of on-line (or in-person?) groups for your illness/comparable ones that are mostly pity parties. There is nothing more irritating and disheartening than listening to a bunch of people who have given up, want to die, etc. Find people who are trying their best to adjust to their 'new normal' and doing whatever they still can and being grateful that their diseases are at least not ones that give them limited months to live.
posted by kmennie at 11:42 AM on April 29, 2016 [11 favorites]

ssg makes a really good point, and it's something that I have a hard time with, too. You have to be really careful not to overcompensate on good days. It's natural to want to cram in as much as possible when you're feeling good, but then you end up knocking yourself back.
posted by radioamy at 11:46 AM on April 29, 2016

I don't know what I dislike most about about living with Crohn's, but the severe, crushing, black-hole-of-energy fatigue has got to be near the top of the list. Even when everything else is going reasonably well (i.e. other symptoms are reasonably well controlled), the fatigue can be debilitating. I did my own literature review, found that my experience was not unique, and then decided to find someone to work on just fatigue with me. I meet with a neurologist/psychiatrist who has extensive experience working with patients with chronic illnesses every few months, and he writes for stimulants. Wellbutrin, provigil, concerta, IR methylphenidate... is it perfect? no. but it is much, much better.
posted by mattbcoset at 11:52 AM on April 29, 2016 [1 favorite]

All these answers are gems. My long list of ailments (including CFS) cause fatigue, pain, fainting, and cognitive issues.
Once I'd understood the size of my energy envelope, I set my intention to never exceed 85% of it. By minimizing crashing, I avoid the emotional plummet which accompanies being reminded all over again that I'm indeed ill.
The envelope please:
  1. making my own breakfast and lunch. (This only started after I regained two hours by eliminating gluten from my diet. Previously, I ate frozen meals.)
  2. two and a half hours of "healthwork" a day. Private maintenance tasks like personal care, light-box, stretching, meditating as well as outside medical appointments, figuring out bills, wrangling insurance. I'd rather spend that time elsewhere, but that's how long it takes to stay at my current impairment level.
  3. My One Thing: one voyage outside my house or one visitor or reading. Social contact is crucial. I started at a public library, where I can space out, watch people, (if bored) do research, read magazines.)
That's it. I schedule one thing a day outside my healthwork. I am super fortunate to have a supportive partner who cooks dinner and keeps house, otherwise I'd be buying those services.

Due to illness and meds, my memory is weak. I immediately write down an idea, plan, joke, task as soon as it comes to mind. Offloading new things to paper makes it easier to concentrate on whatever I'm doing.

And when you have a fabulous upswing, if you can, pay yourself first. Disabled folks also have the right to play.

Susan Wendell's The Rejected Body addresses her experience as a philosophy professor with CFS, while uncovering the deep prejudices we face as atypical humans.

Since I don't drive, my powerchair is my single best hack. I have a guaranteed comfortable seat (without dangling legs), I don't have to carry anything, and I can wander around my community at will.
posted by Jesse the K at 12:22 PM on April 29, 2016 [6 favorites]

I don't have all the answers as I'm dealing with the same issues myself. I'm just hoping that it will get better - as it's a disorder that tends to somewhat resolve in most people. But it's a matter of years, not days, for me. (Plus the idea that there may be other things going on too.)

Anyway. I've been pretty much home bound for over a year. Luckily my husband can do a lot of errands and shopping but that doesn't take my pain away. Nor does it make it any easier for me to actually do anything.

I will say the thing that's helped the most is a therapist. She's been wonderful in helping me cope and make a plan for life. She's helped me organize what's most important to get done and problem solve for areas that are lacking. There are also online and phone therapists if you're unable to get in somewhere. (It's been a few months since I've been to mine due to stuff, but my last session I was really sick and she did a phone session and charged insurance even though you're not supposed to do that.) So see if you can get with someone who can understand chronic illness.

Of course, please do keep pestering doctors if they're not giving you treatment options or if you feel that the treatment options aren't helping. I too agree that you have to find your limit to what you can do every day. Don't overdo it. (I still struggle with this because some days I can do a lot and other days I can't move. I used to have many days where it felt like I always had negative spoons for the day.)

It seems people above have some good tips for logistics.I of course want to mention Amazon Prime and see what they offer in your area for household and grocery options.

Please don't hesitate to memail me. (This is my anon account but it will get to me and I can give you my real contact info.) I think having someone to talk to who "gets it" can be really helpful. And hey, I've got nothing on my schedule other than TV and trying to get the damn dishes done.
posted by SockWombat at 1:02 PM on April 29, 2016 [2 favorites]

I have MS or MS like Mystery Disease. I am disabled by it and have not worked for pay in a very long time. Back in the 90's I read a book by Cheri Register called Living with Chronic Illness. I cried all the way through it. It was the first time I felt someone understood how I felt about life and how fucking inconvient fatigue is. My whole life centers around my energy level. It sucks. Now that that qualifier is out of the way let me say that my situation is a little different in that I had many friends that helped me in the past and I now liv with a family member who helps me when I need help.

So for my day: I went to sculpture class (yippee I'm back in school). I left 3 hours early due to extreme fatigue. Someone helped me to my car. I was embarrassed. I came home and slept for 3 hours. Felt slightly better. Baked two cakes for event tomorrow morning. Fatigue returned and walking is now screwed up. Burnt one cake and ate half of the other one. Decided I would drop stuff off in morning and come home. Skipping the event. Still need an edible cake. Shit. They may not get a cake.

Many good suggestions have been made above but another one to consider, depending on the country/ state you live in, is a Case Manager. They help you connect to services that you qualify for, like help with shopping, housework, self care, etc. They can bump you up waiting lists and alert you to new programs. I found out that HS students needed to do community service and as a disabled senior they could do yard work or walk my dog.. Anything I needed that was safe for them to do. I would have never known about that without my case manager. You do not have to be destitute to qualify especially if you are also a senior. I recently received a free window AC unit from my local MS group. That tip came from my local librarian.

I think it helps to have as many connections with people as possible. I give back in any way I can. I mostly do volunteer work from home these days. Making phone calls no one wants to make, data entry, whatever the groups I volunteer with need. They know that I may have to cancel or change plans. Sometimes I can accept this about my life and other times I really struggle with it. Today is a struggle day.

Good luck. Feel free to email me if I can help in any way.
posted by cairnoflore at 8:17 PM on April 29, 2016

My situation is similar. Chronic, slowly deteriorating illness. Old woman (70). I stopped driving, and can't walk much. I have no family and no local friends. I get you. I have groceries delivered once a month; disability changes your eating habits of necessity. That becomes natural over time. Amazon Prime is a blessing for filling in food, and other supplies. I have my house cleaned every three months, and in between it's orderly and dusty. Yard work is the only exercise I get. I hope you've found some practical way to get a bit of exercise.
posted by melesana at 8:55 PM on April 29, 2016

My Dad volunteers for Catholic Charities and one of the things they do is go around and do stuff for people who physically can't do it for themselves. Like spring clean the yard, get appliances fixed, clean out a garage, run errands, set up computers, take the trash out etc. You almost certainly have a local group and they are pretty great, it's worth a call.
posted by fshgrl at 10:45 PM on April 29, 2016

The main thing that I have done for myself is to excel at crochet. I also knit, sew, etc. The reason why this helps me is that I can do it while I'm sitting still so when I have a bad week I at least have something to show for it. It keeps those ugly voices that tell me how useless I am at bay. I've done something today, look at all the rows that I have to show for my day. The RA might keep you from that but you can find something that you can do, depending on your symptoms. When my hands hurt so bad that I couldn't close them, I put down the crochet and picked up knitting, because the position needed to do it was less painful. It still caused my pinkies to hurt so badly that they became numb but, at least I was doing something. Put together a puzzle (you can do online) or join a book club, anything to feel productive.

I try to stock up on certain freezer foods, which is tricky because, as I'm sure you know, being chronically ill means that there isn't much money for the fancy stuff and, let's face it, most of it is crap that doesn't mesh well with our bodies. I have 3 things that I like to keep on hand when there is money for them. I cook once or twice a week during the bad weeks and I eat what I've cooked for several days. It's boring but it works. I use paper plates and bowls as much as possible.

The big challenge for me is getting rid of the clutter. Brain fog makes it tough to make decisions on what should go and what should stay, and there is always the fear that I'm going to throw something out that I will need and not be up for going to the store for. I'm working on that. I've been clearing stuff out and that helps with the housekeeping. I'm not going for perfection, my goal is to keep it to a level that is healthy. I don't entertain much.

Not going places means that you lose the fun of novelty so fight to keep that. I allow myself a small budget every month and sometimes I only buy toothbrushes but it's fun to shop and have something delivered. Being sick makes your world very small. It's important to focus on the small moments of joy. New toothbrushes make me happy. It's not a ski vacation but it's what I have and I'm going to enjoy it. Try to get as much variety in your day as possible through books, television, and online entertainment. The more that you expose yourself to, the bigger your world is.
posted by myselfasme at 10:52 PM on April 29, 2016

If possible, schedule an appointment with a psychiatrist to talk about your options for mental health meds and therapy. Even if you're not enduring a chronic mental illness, your question has a lot of indicators of depression and that is very treatable. That way even on your worst days you will begin to find it easier to both accept your situation and not dwell, and get joy out of things that you can experience on those worst days, instead of everything getting soured. Additionally, addressing your mental wellbeing can lead to becoming less socially isolated. Yes, healthy people are annoying, but they sure can be useful!

One thing that has helped my friend with MS who loves to cook is getting an adjustable comfy chair for her kitchen, with one of those trays on wheels that fits over the chair. She uses it for chopping and prep so she can be sitting. Then the tray can wheel over to the stove so things don't have to be carried. Think through your preferred household activities like that and make accommodations for yourself so they're more doable for you. Then work on accepting that the things you really hate probably won't be getting done.

Investing in a few assistive devices can make bad days endurable. If you have trouble holding a book, look at book stands that arch over your bed or chair. If you have trouble cutting tougher foods, a good sharp steak knife can make a difference, as can making different food choices like stir fries and pasta and soup, where everything is already bite sized. A good selection of wedge pillows for support when you're resting can make that rest much more effective. Since driving is important to you, look into the different things made to help disabled folks drive safely and comfortably.

Do you really use all the space in your house now? You might be able to save a lot of money (to pay for services like cleaning and grocery delivery) by moving to a smaller place. And moving somewhere with an attentitive landlord or maintenance staff can be amazing, because they will do things like change light bulbs and maintain a yard and solve utility issues and it won't be your responsibility. Also, if you downsize your possessions, the collective weight of all your stuff will be lessened. Less laundry, less dust-collecting books, less things on high shelves, less bathrooms to clean.

If moving isn't feasible, think about rearranging the uses for the rooms in your house. Then shuffle and cull your stuff a teeny bit every day if you can manage. Post about free items on your curb on Craigslist and freecycle and let people take things away for you. You likely have a local organization who would come pick up donations of things as well, if you've collected a nice pile of useful (for other people) stuff. Once nothing in a room is going to be used by you, close the door and enjoy not having to clean it.
posted by Mizu at 3:36 AM on April 30, 2016

I have as-of-yet insufficiently managed hypothyroid, autoimmune-related. I experience fatigue on a regular basis, sometimes debilitating. I also pay for it the next day if I overdo it on one day.

To make things even more fun, I also have a physically active job (massage therapist).

These are the things that have helped me cope:

I've learned to repeatedly mention my limitations to anyone who might be affected by them, in terms that seem overly dramatic to me. I would like people to know that if I can't do X thing we'd planned to do, why that is and not to take it personally. I've been shocked at how little some people register what I've said. Most people I know seem to assume perfect health by default. I have to repeatedly remind people of what I'm dealing with. I've sent links to the spoon theory, explained my situation, and still had people immediately after that speak in a way that implies a lack of thought for what state I'm in. They assume endless energy and predictable scheduling.

I used to feel weird about airing my personal medical problems, but now I've come to a point where I mention it early and often, to head off problems. I over-emphasize that I am not committing to an activity, only tentatively saying I might attend/participate. For close friends and family, I mention details of how I'm feeling on a regular basis, because if I don't I find that they seem to forget all about it. This is fairly amazing to me, but it is what it is and I've learned to do what doesn't at all come naturally to me--make what feels like a big fuss about myself, to get people to even retain that info *at all*.

Since you say you have no friends and family nearby, maybe this doesn't apply to you as much as far as scheduling is concerned, but maybe you too feel odd about explicitly telling friends and family what you're going through. I think you should if you haven't already. And you may need to belabor the point if you have friends and family who assume perfect health by default. If you're vocal about your issues, you might get more support, emotionally and practically.

I've also slowly gotten better about the way I schedule things. I schedule big breaks between massages (a half hour minimum), work a light schedule, and even then feel hideously drained some days.

I prioritize paying work, period. Everything else can and does slide. Housework especially. I've tried to still have a creative life, but have missed a few rehearsals lately and am considering putting that on hold.

I've been a big To Do list person for many years, having daily, weekly and monthly lists, and I've finally learned that after planning things out, I need to consciously go back and chop what I think I should be able to do at least in half, and even then I've ended up having to reshuffle because of neglected items. I have started putting in catch-up days where I have nothing scheduled. I know I'm not going to follow my schedule exactly, but it's easier to modify the schedule when I have wiggle room.

Probably the biggest thing I'm still working on is the guilt at how little I often get done. But scheduling less in the first place does seem to help.

The suggestions to hire cleaning services, etc. aren't going to be viable for many (most?) people with chronic illnesses. One of the things that tends to get zapped early on us earning power. I'm doing well just to pay my bills, I have nothing like enough money to go around hiring expensive services. Maybe if you're outside the US there is some way of getting help without paying through the nose...
posted by mysterious_stranger at 6:13 AM on April 30, 2016 [3 favorites]

I'm in a similar situation - 2 years effectively housebound/with very limited energy for outside activities, isolated from friends/family, live alone.

It sounds like you're still struggling with some internalized ableism and you're holding on to "look I can be productive sometimes on good days!!" as a sign of your worth, which makes your hard days even harder (and pushes you to overdraw on good days because OMG getting things done!! instead of letting yourself enjoy your good days). Hopefully reading some of the books suggested above can help with processing that. It also sounds like you're still in the process of mourning the (abled) life you thought you'd have, like you haven't let go of your previous expectations, and comparing your reality to your expectations is making you really sad. You have to figure out a way to shift your thinking, to accept your current energy levels as your new normal, even though that's heartbreaking and frustrating and scary.

I agree with the comments above urging you to reframe things so that your bad days are your baseline. Not your overdrawn days, but your low energy days where you feel like you can only get very few things done. You need to learn how to get what you need done without relying on your good days because it's incredibly discouraging to be constantly sitting around stressing about when the next good day is coming. This will likely mean that you need to shift things off of your "needs to get done" list and onto your "would be nice to get done but not essential" list. Lower your expectations to something that you can meet without relying on a string of good days or overdrawing so badly that you crash for 3-4 days. Some things are worth overdrawing for, some things aren't. You might find that reducing your "I need to do so many things" stress will give you an extra spoon on some days.

Learn the value of a job half-assed. You don't have to do a task in its entirety for your effort to have been worthwhile. If you have just enough energy to clean the dirty toilet but not enough to do the whole dirty bathroom, do the toilet. One thing less to do. Your home is never going to be spotless and that's OK. (If you have a perfectionist streak this is REALLY HARD but if you can shift away from it your stress levels will be so much more manageable.) One of the things that was hardest for me was lowering my expectations around home-cooked meals - I had a couple nights where I tried to cut vegetables while lying on the kitchen floor crying before I realized how ridiculous I was being and started giving delivery food a higher part of my budget. You'll probably find your own weird sticking points.

I find it helpful to schedule things loosely - instead of "I will do X on Tuesday" it's "I will do X early next week" so that I am 1) ready to do it on Monday if I have enough spoons for it, and 2) less disappointed if Tuesday turns out to be a low spoons day and I can't do X then. I also think of my day as three "chunks" - morning, afternoon, evening - and accept that I will lose at least one of these to a nap. I schedule one thing per chunk. Most non-appointment plans I try to make get cancelled because I'm too tired to do them and that sucks but I'm much happier when I'm not lying flat on the floor crying of exhaustion.

Honestly I was so scared of letting myself do things in a disabled way because I felt like my world would collapse the instant I stopped trying so hard. I felt like I would tumble down this slippery slope of not being able to do things, of losing all kinds of important skills, of who knows what but I was sure it would end badly. In fact, the opposite has been true. The kinder I am to myself, the more I accommodate my disability, the easier my life is. I can do so much more if I skip the hardest things. You will be OK.


An extra note: When describing your illness/disability to professionals or on disability-related forms, you need to describe your bad/worst days. Think of it this way: you are seeking help for your disability, what is your disability like when you need the most help? We frequently downplay our symptoms and this usually bites us in the ass when it comes to getting institutional support.
posted by buteo at 10:25 AM on April 30, 2016 [5 favorites]

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