On Being Sick and Also Very Cool

Be so inspired by my living with the occasional surprise need for a nap!

This is my post on my personal strategies for being social and disabled– which I’m using here as just meaning ‘struggles with unexpected things’. I’ll cover some physical tips first, and some social tips afterwards.

So, you wanna be sick and also hot? Cool.

Ground Rules

You are sick and have no obligation to be cool. Don’t make yourself sicker in pursuit of it (unless it sounds really fun and you don’t do it too much).
Being very cool rocks, tho, and makes me feel good.

Adjust this shit as needed for you, but here’s some things I need:

I want the physical sensations of being clean
I wanna smell good
I want my hair to look neutral or good
I do not want to submerge myself in water
I do not want to be stuck in a room full of steam (risk of fainting)
I do not want to raise my hands above my head for more than 2 minutes at a time
I do not want to do laundry daily

My Process for Freshening Up Without a Shower

Step 1. Undress as needed to wash face, neck, shoulders, underarms, and thighs/groin. You may wish to bring a plastic stool or similar into the bathroom.

Step 2. Use a washcloth with warm water and start everything with a water rinse. Wring out the cloth so it does not cause water to drip down your body. If your skin is very sensitive, you might prefer flannel washcloths. They feel quite pleasant.

Step 3. Then, rinse and re-wet cloth and apply one pump of foam soap. Squeeze washcloth to get the soap evenly distributed. You can use a special soap for your face, or not. If rinsing sounds really hard, you can use micellar water instead. Wash starting with face/neck, and then to under arms and thighs/groin. Rub over any areas that get sweaty or feel greasy. Rinse cloth as needed.

Step 4. Next, rinse the cloth twice and lightly fill it with warm water, wringing it out again. Go over all the places you put soap, and take that soap off. Rinse and go over areas until you don’t feel soap residue. You may need to use some additional care to freshen up in more intimate areas. Bidets can be helpful.

Step 5. Apply any lotions or deodorants you normally would after a shower. I like to add a little spray of perfume afterwards, but some folks may prefer to omit this.

This method of cleaning the body is quite old, and is often called a bird bath or sponge bath. It saves an astounding amount of water. It takes me about two cups of water, if that, to get reasonably clean. By comparison, a five minute shower uses about 10 gallons, approximately.

The most important part of a bathing strategy is that it’s effective, though. I find that I still prefer a shower to get “really” clean, but this method gets me clean enough that I feel comfy being around others.

Tips to Prevent Getting Dirty

There are a few steps towards enabling these things that are prevention-based.

Braid hair overnight to prevent it from absorbing oils from face.
Wear base layers under clothing to absorb sweat/oils to reduce laundering “real clothes” as often. (My favorites are cropped t-shirts with some built-in support.)
Wear a fresh base layer of clothing every day (and ideally also change your clothes for night).
Avoid wearing shoes without socks
Use powder-based sunscreen daily to avoid over-saturating face with oil. (On big outside days, I’ll also use a traditional sunscreen.)
Have a good meal the night before and a good breakfast the day of your plans. (Trying to prevent needing a nap at a crucial time!)

Tips for Maintaining Relationships

Being close to someone sick is a little scary. It can be confusing what someone else can or can’t (or probably shouldn’t) do on any given day. Your company might not know:

If it’s easy for you to tell when you’re sick
If you’re having a “good” energy day
What kinds of activities can cause trouble for you
Which things you can do together that are worth it anyways
What things/rules/needs are flexible and which aren’t
What it could look like if your condition acts up
If there is first aid they can render when something happens

Setting Expectations

When I start seeing someone, I let them know about various things that can cause trouble for me, and what the effects are. For me, this primarily means fatigue and joint dislocations. I let them know which kinds of motions can cause issues and warn them that if I move them away from a part of my body, it’s likely because they’ve inadvertently hurt me.

I let them know what it usually looks like if I need to put something back where it belongs, and what the usual timeframe for healing looks like. I also reassure them that I understand that they’re not trying to hurt me if it happens, and that I get that this is probably their first time being around joints like mine.

I think people are afraid of hurting people, and they’re also afraid of their own ignorance. I try to set things up so that it’s unlikely to feel like I am weaponising anything against them to help them feel safe around me.

Day-to-Day Communication

I find letting whatever company I’m keeping know how I’m feeling is helpful. I tend to use phrases like “I’m feeling more light-headed than usual today,” or “Would you mind if I take a break for a few minutes?” or “Today is not a thinking day, but I am very glad for your company.”

Letting your friend know you might need something helps them be a better friend to you. It lets you two work together to deal with whatever sick you’ve got, rather than keeping it as your own personal struggle.

Your friends aren’t your caretakers and don’t owe you any certain standard of living. But they do probably want to help out, especially if it’s something trivial for them, like “Would you mind handing me that glass of water? I’m feeling a bit dizzy.”

I often ask about accommodations that I need, as if they are optional, although some of them might not be (needing to rest, eg). Even though it would be wild to say no, I ask anyways as to open a dialogue.

I do this because I wish to avoid my friend feeling abandoned or resentful because we started something together and then I just left them. If they’re getting tired too, I don’t want them to feel bad while chopping vegetables! I want them to join me on the couch! The vegetables can wait a few minutes.

If I know something is urgent, I attend to it first, and then communicate why afterwards “Sorry! Give me a minute, gotta fix my foot bones!”

Controlled Fall (or, when things get Bad)

As humans, we learn a lot of how to respond to social issues from stories. In the case more serious illness, though, I find that my friends are usually woefully unprepared.

We have narratives for what to do when a friend has a cold (offer to bring soup), or when they lose a loved one (offer to bring a casserole), or when their partner dumps them (eat ice cream together). However, all of the narratives we have about what to do when your friend has cancer seem to involve quitting your own job and selflessly making your life about them (thanks, Hallmark). We do pretty well when our friends are a little bit sick, but when they get more sick than that, a lot of able-bodied people get really uncomfortable and withdraw.

I have had my heart absolutely shattered by friends who did nothing when I was Very Sick. Let me save you some heartbreak.

Before talking with your friends as a whole, sit down and really think about what you want in terms of support from them.

What I usually need is for them to just keep inviting me to things, or to be cool hanging out in their back yard instead of their living room, or for us to split dinner. Usually, the help I want from my friends is just for them to be a little understanding, and to just keep being my friend.
Decide what you are definitively responsible for in your own care, and visibly own it. This helps reassure folks that you don’t intend to exploit their help.

If my sink gets very full of Depression Dishes, I might ask a friend if they’d mind helping me, but I usually offer something in trade, like dinner.

Be clear when you ask for help– ask for what you actually need help with, and tell them what parts of the task you plan to do yourself. This helps them understand what you’re asking them for and demonstrates that you’re investing your time and energy into the task, too.
Inform and invite groups, but ask individuals.

Your friends care about you and are likely to talk about you (a little bit) when you’re not around. Sharing details of your situation with them as a group can help them know it’s OK to work together to coordinate helping ya out.

If you need everybody you know and love to show up for something, feel free to invite them wholesale, but be aware that it basically needs to be fun or well-accepted. Eg, a ‘getting better’ party, or moving with beer and pizza.

If you actually need help with a specific task, ask whichever individual you think could help most easily. Nothing is more depressing than asking a whole room of people if someone could drive you to a hospital 300 miles away, and getting total silence. Or, a logistical nightmare.

Start with one or two people first, and then ask more, but always be open about what you’ve already tried when asking for help.

When you ask for help, ask if you can do anything in exchange– offset the cost of taking time off, bake for their family, whatever. Keep it to things you can actually achieve without stressing yourself out. This can help break up concerns of a patient/caregiver relationship forming between you and your friend.

Tell your friends when someone’s helping with something you asked for their help with. It reassures them that your needs are getting met, and it shows them that you are the kind of person someone thinks is worth helping and aren’t a total lost cause.
Share your triumphs.

Your friends are helping you through something Bad. When you start to do better, be sure to share that with them and celebrate together. They worry about you! Let them know when you’re well, when you get out of the hospital, when you finally get a diagnosis, treatment, caught up on housework, whatever.

Your friends deserve to support you through good times and bad times– let them be there for you for both.

If you aren’t sure you’re totally better, but you’re kinda better, share and celebrate that! More celebrations aren’t a bad thing. It’s a good excuse to get together, and people like to be happy with each other. They don’t like to be bored, though– try not to stand on ceremony too much with your celebrations.

And remember– these celebrations aren’t just for or about you, they’re also for the community of people (including you) that helped get ya through the Bad.