2023 New Year’s Resolution

You probably don’t remember me saying that I don’t typically make New Year’s resolutions, but it’s true. I make maybe one a decade, and then I usually forget all about it.

But what the heck. I feel like making one this year, however futile it may be. This year I resolve to be less hard on myself.

I’m not the person I used to be. My physical limitations prevent me from doing the things I’d like to do – the things I used to do.

I’m no longer as organized, as squared away, as I used to be. And while I still aspire to continue downsizing until I have less stuff to wrangle, I also need to find a way to be okay with the clutter in the meantime.

My memory is shot to hell. I just don’t remember things. It’s alarming and discouraging, but I’m finding ways to deal with it. I try to do things as soon as I think of them, so I don’t forget. This means that I don’t necessarily do things in an orderly fashion any more. It’s more like I see something and remember what I meant to do, so I do it right then. Then I sit down and rest. Next time I get up and move around the house, I see something else I meant to do, and then I do that. No coherence, but at least I’m still getting things done.

I also don’t batch as many errands as I used to do. I just don’t have the executive function or the energy to deal with a long list of things to accomplish in town. So I do one or two as soon as I figure out what I need, and resign myself to the fact that I’ll have to do fewer things at a time and ultimately make more trips in order to get everything done.

One of things I did in the past year or two to help with my forgetfulness was to get a password manager. I resisted getting one for a long time, but I’m finding it very helpful and I’m glad I did it. [Although I got a family account, Spousal Unit *hates* using it. That’s fine. They don’t have to use it for their stuff, but at least they know where to go look for our joint passwords if it’s an account I set up and I can’t remember the password.]

I also created a morning checklist and an evening checklist to help me remember to take my meds and do health and hygiene tasks, but I need to get into a daily practice of using them. I also should probably get a whiteboard calendar and start logging doctors appointments and such where Spousal Unit and I can both see them and keep track of them.

I hate chaos. I hate disorder. I hate clutter and untidiness. And I intend to keep working to bring order to the chaos that is our small house still overflowing with items from our larger previous house.

But, in the meantime, and from now on, I resolve to be less hard on myself about it. I am no longer the person I used to be. I cannot continue to hold myself to standards I can no longer meet. It accomplishes nothing aside from making me feel bad about myself and my situation.

I can continue to learn, to discover new hacks and accommodations that help me deal with my limitations. I can implement these techniques and use these aids. But I can also give myself grace. I can accept that I am no longer the person I was. Accept that I can no longer do the things I used to do, in the ways I used to do them.

People like to argue that anything is possible if you just believe and try hard enough. “You just need the right attitude!,” these people like to say. In the chronic illness/disability community, this is known as “toxic positivity.” The truth is, you can’t necessarily change reality through hope and hard work. Especially if you’re from a marginalized community.

I can’t become healthy and abled from wishing it so – I know, I’ve tried for years. I can’t become healthy and abled through eating right, exercising, or taking the right supplements – I’ve tried that for years too. But the toxic positivity people are right about one thing – I *can* control my attitude.

So I choose to give myself grace for my circumstances and my state of being.

Rather than chasing a pipe dream of restored health, I choose to pursue adaptation to my current health. I choose to pursue acceptance, to seek a zen-like acceptance of my reality. I choose to walk the path of the Serenity Prayer: To accept the things I cannot change, to change the things I can, and to be able to tell the difference.

That is my resolution for 2023.

Chronic Illness: What’s in the Bag?

A popular topic of conversation on Disability Twitter is what we carry with us when we leave our homes to help manage our conditions. Recently, my cousin asked me the same question, so I thought I’d show you all what I take with me whenever I leave my house.

[Note: I try to find small containers to use inside my bag/pack whenever possible, because ounces become pounds when you’re carrying a bag/pack for a long time.]

Safe soap. I repurposed a small spray cylinder by emptying it, cleaning it, and filling it with a soap that is safe for me to use. I react to the commercial soaps available in public bathrooms, so carrying my own soap with me allows me to wash my hands when I’m away from home.

Alcohol wipes. These have a multitude of uses, including sanitizing my hands and inhaling the vapors as an anti-nausea technique. Since I am allergic to hand sanitizer, this is what I use as an antiseptic. They’re also useful for cleaning my hands/face when I have been exposed to an allergen.

Water bottle. I actually carry two. An 800ml (27 ounce) bottle filled with filtered water for drinking, and a 12 ounce bottle filled with 8 ounces of filtered water for mixing with a medicine that requires diluting. [An 8 ounce water bottle would be more efficient and take up less room, but I couldn’t find one.]

Tissues. For runny noses, etc.

Lip balm. For dry lips.

Sunscreen. A small container of safe unscented sunscreen, meaning I don’t react to any of the ingredients. I use a mineral/barrier sunscreen for my face.

Foam ear plugs. Good for loud movies, etc. I keep a pair in a purpose-built container My Boomer Parent got at an air show. You could find something similar online. Ear plug holders are also often available at military uniform stores.

Rescue medicines. I always have migraine rescue medicines in my bag in case I have a migraine flare while I am out. I also carry Epi-Pens with me due to the risk of an anaphylactic reaction that comes with my MCAS (Mast Cell Activation Syndrome.) Additionally, I always carry Benadryl liquid-gels to treat mast cell reactions.

I wanted other people to be able to easily find my Epi-Pens in an emergency, so I found this clear case online and added a sticker I also found online.

Daily medicines. If I’m going to be gone during a time I need to take my daily medications, I make sure I have them with me. If there is any chance I might be delayed and be out when I am due to take my evening meds, I take a dose of them with me.

OTC (over the counter) medicines. The basics: NSAID; pain reliever; antacid.

Safe snacks. I carry raw almonds because they are good for a long time and don’t have to be temperature-controlled. A protein snack helps when I am getting a migraine flare. If I’m going to be gone all day, I’ll often take an RxBar as well. The carbs give me an energy boost.

Electrolytes. I often find that taking electrolytes helps reduce a migraine flare or mast cell symptoms. I prefer a brand that comes in capsules, which I can easily wash down with water. No muss, no fuss.

Ink pen. I carry an ink pen with me that has a grip that I can comfortably use.

Small notepad. So I can write things down, because my memory’s not as good as it used to be.

Sunglasses. A necessity for migraineurs.

Face mask. I carried (and used) face masks long before the pandemic, to help avoid inhaling fragrances. I use a cloth N-95 mask.

Cefaly. If I’m going to be gone all day, I take my Cefaly device with me in case I experience a migraine flare. This device stimulates the vagus nerve and helps reduce or eliminate migraine pain. I have a Cefaly Dual, which is much smaller than the original. It’s easy to take it with me in its protective case.

The Basics: phone; wallet; keys

{I would have included more pictures, but Word Press wouldn’t upload more than one for some reason.]

What do you take with you when you leave the house?