DISABILITY 101--DAMN FINE COOKING, SELF-CARE, & A BASKET OF HELP

Chances are, either you or someone you know among friends and family is a "Spoonie," meaning those of us with any kind of chronic illness, be it mental or physical, which impacts are daily lives. Those who know me know I had 3 kinds of cancer 6 years back, 2 surgeries, plus months of chemo which left me with an ANSD--Autonomic Nervous System Disorder (Orthostatic Hypotension) and Peripheral Neuropathy. But alive. When my doctor found that my blood pressure dropped 30 points between time sitting and time standing, he diagnosed me and put me in for a Handicapped Parking Pass. Sometimes I use it but often do not, as so many have more serious handicaps than I.

Over these last 6 years I have researched and developed some wisdom (Rick calls it, "Wisbom") about living as a Spoonie and how to find joy, make life easier, and just get down with where we are.

THE SPOON THEORY:

 

1/ Check out: www.butyoudontlooksick.com website to find many helpful ideas and suggestions. Christine Misericando, who has lupus and fibromyalgia, developed the Spoon Theory to explain to a friend how she had to always plan ahead for her day and figure out how many units of energy (spoons) she had left. Also check out Dysautonomia USA, POTS, and Dysautonomia Mass. to find help if you have an ANSD. Figure out in the morning what you have to do and measure it against the spoons in your drawer, (you get 12) knowing that certain activities take more "spoons" (energy) than others. Here's some examples to make this more concrete from this past Saturday:

--Woke up after a good sleep, felt pretty damn fine. Had lots of coffee (caffeine can kick in the not-good parts of being a Spoonie, but do I listen? Noooo...), then got to work prepping supper as we had a late afternoon Mass to attend. If I had been THINKING, I would have realized that making Tuna Croquettes in the air fryer would take 5 spoons at least. Who knew? So, down 5 so far.

--Then I decided to make Sugarless Chocolate Candies for friends which meant standing a lot. Melt 6 oz. stevia-sweetened dark chocolate (I get mine from Amazon, sigh, Lily has a good brand) with 2 tablespoons melted coconut oil in your microwave for 30 seconds. Stir, check, do another 20 seconds or so. Watch so it doesn't burn. When cooler, mix in 1/2 cup finely chopped walnuts and cool in fridge. Once firm, scoop out 1 tbsp. of chocolate, roll between hands, and roll in shredded coconut and chopped walnuts. Makes about 16, but with brain fog I could be wrong!

 This subtracted another 4 spoons from my rapidly-diminishing Spoon Drawer although it did give me joy. It is crucial to do things which build up your joy quotiont, even when they diminish your spoons.

--Now I am down 9 spoons from my allotment of 12. Feeling on the wobbly side, I checked the Barometric Pressure digital read-out (always good when you have an ANSD) 

and it was 965, rather low and bad for Peripheral Neuropathy. Anyone with an Autonomic Nervous System Disorder should have a barometric pressure digital read out. Then when it is below 970, take care, do less, and forget about cooking dinner. Oatmeal is always a good substitute for supper! Good thing I had a chair nearby to plop my weary ass in. So, given the fact that I had stood and cooked for 1 and 1/2 hours (Sheesh!) I used up 9 spoons in my drawer. I was saving the last 3 for when I might need them. Like--getting undressed, into my PJs, brushing my teeth, and staggering to bed at an embarrassingly early hour.

COOKING ADVICE FOR SPOONIES:

Now we are down with the Spoon Theory, let's look at ways to get through your day that do not put you into a helpless, sweaty, crying heap on the not-so-clean kitchen floor.

If you can afford it, have your groceries delivered. I usually use InstaCart in our area, but many grocery stores will shop for you and deliver, or at least have your grocery store do the shopping for you, put it in bags, and you can pick it up at the curb. One less hard thing to do.

--Cook in Batches. My youngest son, who also has several ANSD, does this on the weekends. Of course, if it is a low spoon day, this might not work and you could do take-out instead. Here's what I do:

 

--Put veggies on counter for roasting. (I always order a ton of red peppers, red onions, Bok Choy, and Bellas to get me through the week.) Get out a sharp knife, cutting board, and a big bowl. Plop ass in rolling, sitting chair (see Amazon for good ones). Preheat oven by putting it on Broil first, do this for 10 min. (Best way to preheat oven I have found.) Slice up 2 red peppers, one large red onion, 2 cups of Bellas, 4 OG carrots, and toss with 2 tbsp. EVOO, 1 tsp. smoked salt, and grinding of black pepper in your bowl. Dump on pre-sprayed baking sheet (I use EVOO in spray canister as has not bad chemicals in it), put in oven, turn off broiler, and set oven at 400 degrees for 30 min. Can stir half-way if like.

--Voila! You now have enough roasted veggies for several recipes. I whirl them in Cuisinart first. If making soup, put in 1 cup veggie broth with half of the veggies, plus salt and pepper. Add more broth later. If making pasta sauce, take half of whirled veggies and mix with half a can of full-fat coconut milk or Greek yogurt, full-fat, if you prefer. Put in glass containers in your fridge.

--Get one pound of ground organic turkey or grass-fed beef, put in bowl, and add: 1 tsp. smoked paprika, 1tsp. garam marsala, salt & pepper, 1 tsp. Balsamic Vinegar, and mix with hands. (Can use nitrile gloves if you wish, I do it bare hands and wash thoroughly afterwards.) Mix in 1/2 cup of Panko bread crumbs and fashion meatballs with hands, about 1-1 & 1/2 ' across. Can cook and freeze, save some, or freeze raw. Remember you are still sitting in that lovely rolling chair which supports your back. Cook half of the meatballs with half of your roasted veggie sauce. Here is supper for a few nights, depending on how many folks you have in your house.

  I also am investigating sheet-pan dinners. There are many good recipes on Pinterest, and I am now following MyRecipes which has some fine ideas which do not take long. I am an avid follower of recipes which say: "Takes 10 min. prep," or "Only 15 min. to the table." My kind of cooking.

--Breakfasts: As I am on keto eating, I avoid sugar and gluten. I make a dozen muffins with: 1/2 cup pumpkin puree, 2 eggs, 1 cup almond milk, 2 tablespoons melted coconut oil, 1 & 1/2+ almond flour, 1/2 cup Swerve, 1+ tsp. baking powder, pumpkin spice, 1/2 cup almond flakes or chopped walnuts, 1/2 cup flaked unsweetened coconut, & 1/2 sugarless chocolate chips. If too wet a dough, add 1/3 cup coconut flour. Put in greased muffin tin, bake at 350 degrees for 25 min. or so. Test with toothpick. Cool on rack for 5 min., then take out. Buy non-gluten, sugar-free waffles from your grocery store as a backup as well. Check out "keto breakfasts" from Pinterest for many swell ideas.

--Lunches: I make a big, 2 cup salad with goat's cheese, pumpkin seeds (lots of Magnesium), sunflower seeds, 1/3 cup shredded carrots, and dressing made with 2 tablespoons EVOO and 1 tbsp. of Tahini. Toss well. This is basically keto here. Get pre-washed, organic lettuce to make this easier. Make up dressing when you have the energy and put it in the fridge for lunch.

--I have found that with my disability (There! I named it!), keto eating works best as it is non-gluten and sugar-free. I wish it didn't, but there we are. I have a f.ckton of keto cookbooks, and my favorite now is called, "Keto Air Fryer Cookbook," by Maria Emmerich, which is full of delectable recipes. I kiss it every time I use it, rather like the way our priest kisses the Gospel after the Daily Readings. Also great is the blog, "All Day I Dream About Food," and cookbooks by Carolyn Ketchum, which I use a lot. And truthfully, all day I DO dream about food.

EXERCISE:

Remember, what works for me may not work for you. This is the journey of figuring out what helps and what doesn't, and that's why I keep a journal of foods and exercise, to track things. Standing and cooking for 1 & 1/2 hrs. today is marked down as, "Damn foolish, Broad!"

1/ When I have the energy, I use Leslie Sansone's DVD exercises. Often, I do only a 15-minute one because 30 min. may be too much. Check them out on Amazon and see what you like. Pilates is great for those of us with low spoons, assuming you can get down on the floor and back up again.

2/ Walking, walking, walking.

 If we do not move, we get de-conditioned, and then we are f.cked. I have a large front deck, so I set my Apple Watch exercise timer (Did I mention that my Apple Watch is my saving grace? 

I know it is $$, but if you fall--which I have done with my ANSD--this alerts first responders and sends them to your address.), bring a walking pole, and get some steps in. I can do this most days, unless it is too icy or snowy. Even with my conditions, I usually do at least 10,000 steps per day, sometimes more. Anyone with an ANSD should consider trying to walk for 30 min. per day if at all possible. It really helps.

3/ Chair Yoga. Any kind of yoga is great for stretching, loosening our muscles, keeping us limber, working on our balance (See "Stand Tall, Don't Fall"), and helping us to feel good. Also yoga boosts one's mood, which can be an issue when you struggle with a disability.

4/ If it is a very bad day (see barometric pressure), I might smoke a bit of weed, although I do not love it. (You can order CBD gummies from Amazon, and this can mitigate your symptoms.) Weed helps, though, and it certainly did during chemo. (Weed is legal in Massachusetts, and in Northampton, there are now EIGHT weed dispensaries, more than churches, as our priest recently pointed out in a shocked voice!)

5/ Audible Books:

 If you are dizzy or just feeling wretched and cannot read, this is a great resource. You can get them from Amazon and also through Libby at your local library.

6/ Use the Microphone Function on your iPhone or iPad. My fingers do not always work well, and my close eyesight is tricky, so this is something I use all the time. Just press the tiny microphone in the lower right-hand corner of your device, hold it near your mouth, and speak. So it makes some mistakes! You can proof-read it, or if the day is not good, just send it, mistakes and all.

TELLING OTHERS:

1/ This is really, really, really damn important that you let others know about your compromised condition. As a fast-moving broad who used to exercise her ass off, wrote 50 books, played tennis, ran, lifted weights, did yoga, exercised, it took me a LONG time to come to terms with my disability. Then I had to tell others.

2/ Visits and Chatting: during chemo I invented this nifty non-verbal way of telling people I was used up, and they had to leave. At the start of a visit I would say, "When I tap your knee it means I am out of energy, and you need to leave." Some folks hardly noticed, and I had to do it twice. But because it is hard to tell others, "No, I am done!" this worked well. I am going to resurrect this, as, even though I Don't Look Sick, I actually am. We all forget this, including me even now.

3/ Using a Cane: When people see you with a cane, they tend to open doors, walk around you, and give you more space. Although these days, not always. Sometimes I feel like hitting people with my cane, but that could end badly, given the rate of guns in folks' hands, so I do not.

SELF-CARE:

1/ Put a Basket by the place where you sit and put in it:

--a large heating pad;

--a flask of water with electrolytes, (keeping hydrated is very important with an ANSD);

--a kindle loaded with good books;

--fingerless gloves;

--a sweet-smelling sachet;

--a list of all your passwords written down and taped to the back of your device, because brain fog, concentration problems, and bad memory are often part of an ANSD;

--a shawl to throw around your shoulders, preferably a Reiki shawl;

--a journal to write in and keep track of your symptoms; sometimes I write down what I have accomplished so I don't feel like a total fail.

2/ Put In the Menu of a good take-out restaurant or cafe nearby. Get someone you love to pick up meals at least once a week. My youngest son uses CookUnity occasionally which delivers excellent, healthy frozen dinners to his house.

3/ Put a Bench in your shower to sit on so you can take long, hot showers. I can't do baths anymore, even if we had a tub, which we do not.

4/ Add Inspirational Books in that basket to lift your spirits. Try: "Small Miracles" by Yitta Halberstam & Judith Leventhal; "A Catholic Woman's Book of Days," by Amy Wellborn; and anything by Joyce Rupp and Richard Rohr. Good humor books to include would be, to my taste: "The Plumdog Blog," (also on Pinterest), and "Three Men In a Boat." Skip Apocalyptic novels.

5/ Pray. Even if you are not a person of faith, pray anyway because it will help you feel better. I imagine God as a large woman of color who holds me in the palms of her warm hands to help me heal and feel better. It works. Always.

6/ Nature: if it is an off day, just put a chair outside your door and sit in the sun, smell the breeze, and listen to the birds, if you have them. Even looking at a picture of something green on your smart phone can calm your heart and restore your soul. This has been scientifically shown. Weird, eh?

Ok, my peeps. I know this is a long-ass blog post, but sometimes, wisdom and her children take a long time. Remember, not all days will be bad, and not all days will be good. As one doctor said on one of my sites; "We are not looking for a cure. We are looking for more good days then bad days." Amen. As Pastor Love often says at the Alden Baptist Church in Springfield, "I wish I had somebody....." Meaning, to say Amen!