I love a good system. I love finding really good ways to do things, and evolving them as circumstances change. Here are some ideas that could help improve your quality of life.
This page is getting super long, so here are some quick section jumps:
Wegmans: We’re a little fanatical about our regional grocery store, Wegmans. And while it is not perfect, I’m a big fan of the Wegman’s app for my phone. Let me count the ways. Log in to the app, and choose your store. You can look up most items in the store, read the ingredients, see the nutritional data, find the price, the location in the store, and add it to a grocery list. You have a club card? Great! When you look up items you can click the my products link in the search results and it will show you what you have personally purchased in the past that met the search criteria. Oh, you only want to see things you’ve already purchased and add to your list directly from that? You can do that too. Your list populates the product image, name, price and location. The list subtotals. And you can email the list to anyone you like!
My friends do my shopping for me, and this makes a difficult task significantly easier. I also send my friends screenshots of my shopper’s club card (which is available to be scanned from the app). When they use it I can sale prices, my electronic coupons process, and my product list history continues to populate. The app also shows your receipts for recent purchases in case someone loses it.
Prescription Delivery: In addition to being a great grocery store, Wegmans has a great pharmacy. They have been abundantly helpful to me on many occasions. But the biggest ongoing help is that they deliver prescriptions from the store for free. My location is on the route for Monday, Wednesday and Friday. They keep my credit card information at the store, charge my card, and deliver to my mailbox on the next delivery day. If I have something that isn’t on automatic refill and I run out, I can also use the app to request a refill. Whatever time of day I remember! Without talking to a human!
Target: Target carries some things I can’t get at our other major stores. Using their app, I can fill my online cart with most store products (non perishable), pay for it online, and they’ll gather everything for pickup. When placing the order, you can designate an alternate pickup person. They get the email confirmation as well, and can just show their own ID in the store. I’m sure this works in lots of other stores, too.
Amazon: Amazon, despite all its problems, is an amazing resource for folks with disabilities. Some things you might not already be leveraging with Amazon:
- There are reduced price Amazon Prime memberships for folks who are poor.
- Lists! Lists are the best. I use them for saving all sorts of things that I’ve researched but am not yet ready to buy. I make my lists topically, and set them to private. I must have 20. Seriously.
- More lists! I keep a public wish list that has a curated selection of things I’d really like to have. When friends and family are feeling generous, they know how to find out what I need and want, and can know they’re getting me something I’ll enjoy.
- Even more lists! I recently discovered there is a second kind of list, that Amazon calls a “shopping list.” The items you put on that list stay on the list, even after you purchase them (you can delete them at any time). This is great for things you purchase frequently, but not on a schedule that you want on autofill. I put all my supplements on this kind of list.
- Amazon Smile. This program doesn’t seem to generate that much money for charities, but if you’re someone who doesn’t have cash to give, it’s a small way to contribute. Choose an organization you’d like to support, and a tiny percentage of most of your purchases will be sent to the charity. Catch: You must shop from https://smile.amazon.com.
- Need to keep track of your medical expenses or business expense? Amazon emails you receipts, so you have an easy electronic record. They also have a tool to download your purchase history. You can just do this at the end of the year if you need it for tax purposes or such.
List making apps: I use Lister, but there are tons out there. I set up lists for all the places I might need things – the food co-op, the farmer’s market, the craft store – then add items to them as I think of them. Then, whenever someone asks if I need anything from that store, I have it all ready to go and just just send the list as a text.
PayPal: If friends do my shopping, I need an easy way to reimburse them. As long as you link a bank account, PayPal is free to use, with no transaction fees, when you choose “send money to a friend.” I don’t have to deal with the hassle of keeping track of checks. I haven’t been to a bank or ATM in a year, so I rarely have cash. I’m sure there are other apps out there that work well for folks too (like Venmo), but this is the most widely used among my middle-aged and older friends. It’s also an easy way for folks to send you money!
Oh my gosh. The amount of information I have to keep track of right now in my life is a bit much. I’m not doing a perfect job at this by far, but it’s not bad, either.
OneNote: I feel as strongly about OneNote as I do about the Wegmans app. No, maybe more strongly. Think of OneNote as bookshelf full of electronic binders. You decide you need a new binder for a new topic (a notebook). You create one. Then you add dividers (sections). Then you add pages in each section. You can move anything around at any time.
- It is included in the Microsoft Office suite, so many people already have it.
- If you choose to save your notebooks to the cloud, you can access them from anywhere.
- You can even make a shortcut to a particular page and add it to the homepage on your phone.
- There are browser plugins that help you save webpages to OneNote.
- You can send emails to OneNote.
- You have massive options for automating item forwarding to OneNote if you use ITTT.
- You can use the OneNote phone app to take pictures (including automatically squared photos of pieces of paper) and insert them into any document.
- It is searchable.
I use it for so many things. I organize all my doctor’s appointments and notes and test results in it (I wrote about it in detail here.). I organize research. I document every phone call I make to annoying bureaucratic agencies, and every piece of paper I send them. I save articles. I copy my Kindle nook notes into it. I compile snippets for my future memoir.
Organize medical information and handle appointments: Check out my overview over at How to Get On.
Google Drive/Google Docs/Google Sheets: The greatest strength for me here, is the ability to share documents with other people.
I wrote a spreadsheet full of important information for friends and family in case of an emergency. It has my car information, address, building manager information, contact information for lots of friends and family, who has my house keys and car keys, who knows how to drive a standard transmission car, my doctors, who is my health care proxy, etc. It is shared to most of the people whose information is on it.
I have a folder on current health information – my current medications and supplements, diagnosed conditions, important reference docs, etc. This folder is shared with my health care proxy.
Airtable (or other spreadsheet, database, or tracking software): I meticulously record a lot of information about my health and treatment on a daily basis. It helps me understand trends over time, and accurately report changes to my doctor. I keep track of activity, symptoms, medications, foods, heart rate, pain, rest, and other details.
Before each doctors appointment I look at my data since the last appointment and jot down summary information. I then say to my doctor things like, “It’s been 52 days since my last appointment with you. in that time I’ve had headaches 31 days, which is 60% of the time.” or “I’ve had 8 days of pain at a six or higher where i needed to take Tramadol. That compares with 15 days in the period before out last appointment. The LDN is helping to reduce the severity of my pain.”
I know that not everyone is able to record so much, but it has been really helpful for both me and my doctor. I like Airtable a lot because it’s easy to use on my phone, and kind of looks like a custom-designed app. I’m able to use star ratings to describe things like pain, an add screenshots from my heart monitor.
Facebook: I’m in a lot of incredibly helpful support groups on Facebook. Sometimes there’s a post that I’m really interested in. The first thing to know it that you can follow any post for notifications as comments are added. The second thing to leverage is saving a post and adding it to a collection. I once needed to advise my doctor on something that came up in an appointment, and I was able to pull out my phone, to to my saved posts, to me “ME/CFS” collection, and tell her what dosage of a medication was being advised by other doctors.
I have decided that peace and quiet is a value of mine, but so is staying connected to friends. I want my phone to work for me instead of against me. I am an Android user, since literally the day after the first Droid was released in 2009. I know nothing of iPhones.
Do Not Disturb: I use a third party app for this. Unless I need to get a call quickly from a big complicated organization with a bunch out outgoing phone numbers, I usually have my do not disturb on. Here’s how it works. During the day, it blocks all calls from people who aren’t in my address book. At night, it automatically blocks all calls and texts from anyone except my starred contacts in Google. Those starred contacts are generally people who walk my dog and might need to be in touch early in the morning, and people who are very close and could need to contact me in an emergency. It excludes some folks I love dearly, but don’t fit in those two categories and randomly text late at night.
Ring tones: For those calls I do let through, I have two different ringtones: one for people I like, and one for everyone else. If I’m in another room, this helps me decide if I even want to expend the effort to see who’s calling. I have done this for a decade and it works really well for me. One or two people also have their own dedicated ring tones.
Textra: I use a third party texting app. It has customizations that I enjoy, but more than anything i love it for one feature: the ability to schedule texts in advance. Let’s say it’s 11:20 at night, and I suddenly realize there’s something I need the dog walker to know before she arrives in the morning? I schedule the text for 8 am. I’m afraid I’m going to forget to text a friend for their birthday? Schedule the text.
Pushbullet: Pushbullet is a third party app that can send texts and other phone alerts to me computer. Sometimes it a lot easier to use a real keyboard.
Facebook Messenger: I know there are security concerns, but Messenger is essentially free messaging with my friends who live oversees, and FB connections who aren’t super close. The new group chat feature for FB groups is interesting, and I’m not yet sure what I think about it.
Turning off the phone/silent: If I really need to rest, I just turn it all off. I sometimes let someone know I’m doing that, and I sometimes don’t.
Signing up for text-driven services: I hate making tons of phone calls. Wegmans has a service for text-driven automatic refills for prescriptions. If they need you to authorize the refill, you just text back. Otherwise, they send text alerts when prescriptions are ready, or if there’s a delay or other problem
Dealing with “The System”
How to Get On: Lily Silver’s site is an *incredible* compilation of resources for self-advocacy and benefits. It contains lots of testimonials of personal approaches and experiences.
Several of us compiled tips on How to Go to the Doctor Without Crashing
Acceptance and Peace
Acceptance of a greatly changed reality is very difficult, but I also believe it is very necessary. We can accept what is true today (and that it may be true in the future), without abandoning hope for change or trying new treatments. I feel strongly that this is one of the single most important things that has affected my quality of life. I have found comfort and utility in a number of resources that are Buddhist or Buddhist-inspired.
Books: There are a few books that I have found helpful, the first is Toni Bernhard’s book “How to be Sick.” I’m a little embarrassed at how long this book sat on my shelf before I read it (and actually, I read the first edition), but I often find that I read books just when I need them. Toni has had ME/CFS for a long time, and gave up a career she loved as law school faculty as her illness progressed. Toni is a regular contributor to Psychology Today, and the author of several additional books on living with chronic illness.
Tara Brach’s book “Radical Acceptance” took a long time to hook me. I think I tried twice before I really immersed myself in it. And I am so very glad I did. My biggest takeaway was the ability to sit with what is true, and even sometimes offer to befriend the things that seem unpleasant, or even horrible. SHe offers a tremendous number of resources on her website, included guided meditations and her RAIN tool. Her weekly Washington DC meditation and dharma talks are on Facebook live each Wednesday at 7:30 pm eastern time, and I try to tune in when I have the bandwidth.
Meditation: I meditate daily, and one tool that helps me do that is the Calm app. With the help of the app, I haven’t missed a day since January 2018. There are all sorts of paid features, including guided meditations and sleep stories. But I just use the free version and it helps me stay accountable to myself.
Beauty by Earth Dry Shampoo and Volume Powder. Seriously. This has changed my life, which I cannot say about the dry shampoos I tried before this one. I can feel and look totally fine 10 or 12 days after actually washing my hair.
Bed wedge. I have two of these and spend all of my time on them.
Wool dryer balls. Between likely having MCAS, and being more aware of my impact on the environment, I switched from dryer sheets to these. No complaints, except sometimes my aides miss them in the sheets. 😉
Simple Exfoliating Facial Wipes.
Field Day Face Hand & Body Wipes.