ARE YOU A SECRET SPOONIE? READ & FIND OUT!

OK, my FB peeps, I am going to talk about "The Spoon Theory," which a woman with chronic illness, Christine Miserandino, invented some years ago. It is totally brilliant for anyone with chronic health problems, mental health issues, recovering from chemo (moi), and a host of other physical situations.

Here's how it works: Remember that "spoons" are equated with the energy you have in your body and mind. We assume you are starting out with 15 spoons in your drawer, but if you are in the midst of a flare and haven't slept well, you might only have 7 available. Think of them as energy units needed to get through your day. I am indebted to "Mollyfund.org" for these ideas, as well as Christine.

1/ Get out of bed=might take 1 spoon.

2/ Taking a shower= could be 2 spoons. (When I am low energy I give myself an "Iraqi bath", as service people used wet wipes to get clean.)  Showers can be beyond me at times. If you have the cash, consider installing step-in showers for ease of bathing.

3/ Clothing yourself=2-3 spoons for me. (People with low energy, whom we call "spoonies," never, ever buy Spanx or wear it. It would take my entire DRAWER to put this on. So nice loose, fashionable, easy stuff my peeps. This also goes for shoes. Slips on's are great.)

4/ Driving to see your doctor=3 spoons. (I am not a fan of medical appointments, having had 3 kinds of cancer & chemo, so I bring a kindle and read to keep my stress level down. Reiki is good for this too, which I often use. In fact--spoonies out there, get attuned to Reiki! It will help you.)

5/ Shopping for food= 3-4 spoons for me. (I love the stimulation of going out into the wider world--colors! people! chat! coffee!, but I am exhausted by the time I get home, despite my coffee and chocolate croissant as a reward for shopping.)

6/ Assessing your meds, which could mean calling the pharmacy and then driving down to pick them up. This could equal 3 spoons for me, though my adorable spouse usually picks up my meds.

8/ Exercising your pet=?? spoons. (If my leg neuropathy is bad that day, I clip dog on her leash and walk her around our house, giving her treats for sitting, staying, and lying down. This is good for our terrier as it trains her and exercises her active brain.)

9/ Exercising yourself; walk, video, yoga? 3-4 spoons for me.  I usually do 30 min. of "Peppy-Peppy" aerobic exercise each morning, but am wondering if doing 28 mi/week is overdoing it? Trying out less DVD & more yoga.

10/ Making a meal=?? spoons. (Depends on what you do. If you order ready-made vegan meals from Veestro, all you do is stick them in the microwave to thaw and heat. Stay away from meal-service venues like: Blue Apron, Plated, All Fresh, Sunbasket, Purple Carrot, Green Chef etc. 'cause they take WAY more energy units to make than we have at the end of the day! As my son said, who first told me about spoonies, "I am out of spoons by the end of the day and they want me to ASSEMBLE this shit? It should come all ready to go.") Sometimes I find I am overly ambitious with the cooking, have to sit down with tea, and ask my husband to finish up for me.

11/ Go to work=?? spoons. Depends on your company, your position, how many toxic people inhabit your office, and so much more. (Working at home for spoonies is great: a/ We can stay in fuzzy pajamas all day; b/ We can work from the bedroom with a laptop and an iPhone nearby; c/ A bathroom is by close for those of us who suffer from IBS or similar conditions; d/ When we crash, we can snuggle under the covers, mute our phones, and nap.)

You can tell that I am way over my 15 spoons in the drawer, but remember--many of these activities are spread out over the week.

Under the category of chronic illness we could include: MS, Lupus, Fibromyalgia, Hashimoto's disease (thyroid), neuropathy, Chronic Fatigue (which they are figuring out might be caused by a virus), Chronic Pain, Long-term Lyme Disease, and others which I am not familiar with.

Here are a few actual stories which recently happened to me, which will give you a better idea of what it is like to live with a chronic condition:

1/ My husband and I met some folks from a Catholic church to talk about ways their parish could be more welcoming to the LGBTQ community. We shared lots of ideas, I gave them a number of organizations to check out (New Ways Ministry, Equally Blessed, & Dignity), and after one hour I tapped Rick on his knee--our signal for when I have to leave--and I apologized; "I have compromised energy as the result of chemo, and I must go." Once home, I crashed on the couch and literally could not move, could barely breathe I was so fatigued. I tend to cry at times like these.

 "It is like an arterial bleed," I told my son, "like all of my blood has just been sucked out of my body."  He experiences this too, and it is wonderful to have another spoonie in the family to share tips and stories with.

2/ At another recent meeting of talented folks, which took almost an hour to drive to--3 of us shared our work, and before a 4th began to read, knowing I was at my sell-by date, I asked, "Is it short?", meaning, I am about out of spoons here on the couch. She nodded and began, but I now know that "short" for normal people is not "short" for a spoonie. After 15+ minutes we were done, and folks kept talking in the hallway! 

My son shares with me that when he says he has to go, HE HAS TO LEAVE RIGHT THEN. Internal crashing is about to commence. It was my job to be more assertive and say earlier, "Guys, I am crashing and have to leave now." That would have helped. I am not always as clear about my needs as I should be, thinking I am the same energetic broad I was before cancer. Also, and this is the title of Christine's blog, I LOOK healthy and fit, even when trembling within. People simply do not know, by looking at me, that I am about to fall apart.

3/ I was a member of a wonderful panel of women from three different faith traditions, talking about how our faiths (Jewish, Muslim, and Christian--that would be me) inform our social activism. Fascinating women, wonderful questions, great moderator, and after almost 2 hours I left to pee, and as I re-entered the room, my arterial bleed struck. I thought, "If I don't leave right NOW, I will not be able to drive myself home." So I excused myself, felt guilty, then left.

ADVICE

Here's some things I have learned that help me, as a spoonie (nerve damage in body and brain from aggressive chemo):

1/ Do batch cooking when you have the energy. Even doing a meal that takes you for 2 suppers is great. 

     a/ My leek and potato soup is almost a 3-nighter for 2 people and is fabulous, recipe on demand, just leave me a comment.

     b/ Use frozen vegetables for these recipes: Ratatouille with frozen organic peppers & frozen charred eggplant, using canned diced tomatoes to round it out, also spices (I can post this recipe if anyone wants it.). Buy either na'an bread or ready-made pizzas to put in freezer for nights you need an easy meal. Preheat oven to 450, smear tomato sauce on bread or pizza crust, arrange frozen veggies from freezer, sprinkle cheese over top, and cook for 15-20 min. 

     c/ Do not forget the glory of scrambled eggs and toast--easy-peasy and delicious. Did I mention that if you are a spoonie, alcohol is not your friend? Sadly, it will exhaust you and make things worse.

    d/ Pick up barbqued chickens at the market are wonderful and will go for several nights. But ready-made salads as well.

2/ Lay out your clothes the night before on a chair, shoes below, so you don't have to frig around in your closet, shedding spoons, hair, and frustration. Buy outfits that are easy to pull on and get out of--ditto for coats. I buy ones with zippers which I can usually cope with; buttons and trembly hands do not go well together. (Also, another tip--trembly hands and soup do not go well together.)

3/ Figure out which doctors are closest to you in driving distance. If their reputation is good, change to them, so you can cut down on time traveling. You also want docs who actually answer the PHONE, so when you are in dire straits, you can connect with them. Ditto for your pharmacy--choose one close by.

4/ Choose beauticians close by: manicurists and hairdressers not further than 20 min. away, preferably 15 min.  I need to change my hair stylist, much as I adore her, because it is a 40-minute drive in winter. I need 18 minutes away, tops!

5/ Tell people you are a spoonie and have energy issues. Put it out there on social media: FB, tumblr, twitter, reddit, Instagram, whatever you use. It's a bit like my being AF, alcohol free: you tell waiters and friends you are taking a break from alcohol, and it makes it SO much easier on everyone.

6/ My final tip: plan on only two events a day: attend a workshop and cook supper; walk dog up the road & meet friends for lunch; clean one floor of your house (save floor # 2 for tomorrow) & sit on couch and read; exercise 15 minutes in a.m. & another 15 in afternoon, IF you have the energy) & meet a friend for coffee nearby. C'est tout! That's it, my friends.
7/ Hoard spoons for later or next day: this is like number 6, and I have read about it but never tried it. It would work this way: if you know you have to go to Boston for a doctor's appointment, you do very, very little the previous day, hoarding your energy for tomorrow.

 What is really crucial about being a spoonie is assessing yourself daily: "How'm I doing this morning? Feet tingling? Legs wobbly? Dizzy? Ok, gonna do almost nothing, maybe read and make  tomato sauce for fettucini from market." Enlist the help of the folks you live with and nearby friends.

 When I text my second son, "Want to come to supper tonight, honey?" He sometimes answers, "This is a low spoon day, sorry to miss you!" "Ok, I get it," I text back with emoji of The Scream. And us spoonies have to give a shout-out to texting--it means you do not have to muster energy to do an email or talk on the phone.

  It is a language you learn--both for yourself and others. It makes life so much easier. So feel free to leave comments, ask questions, whatever. I am open to them all. Here are the links to check out:

--Mollysfund.org

--https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory.