February #SpoonieMonthlyChallenge 

Each month, I post a question a day on a spoonie related topic for the first days of the month. The theme for February is self care! Many spoonies have been talking about how they wish they were better at self care, and we certainly need extra self care at this time. 

Each day I’ll add the daily #SpoonieMonthlyChallenge  question here. 

#SpoonieMonthlyChallenge Day 1. What are some things you do for self care?

Background is two tone ombre going from green to yellow. Text is #SpoonieMonthlyChallenge Day 2. Two things I'd like to start doing for self care are...

Image is an overcast day at the beach, calm grey water, and the back of a woman in a long brown sweater looking out to sea. Text is #SpoonieMonthlyChallenge Day 3 is there an unhealthy strategy you want to let go of

Image is blurry lights going from orange, yellow, green, white, blue, purple and red. Text is #SpoonieMonthlyChallenge Day 4. When you think about self care what color comes to mind? How can you incorporate more of that color in your life?

Image is blue water with ripples across the surface. Text is #SpoonieMonthlyChallenge Day 5. What helps you stay hydrated?

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How Chronic Pain and Illness Fan the Flames of Uncertainty | Psychology Today

” Here are six ways in which uncertainty is a particular source of stress for the chronically ill:

1. Uncertainty about what plans to make with people

We spend a lot of time figuring out what’s best for ourselves. On the one hand, we don’t want to over-commit to others and then have to cancel. On the other hand, we don’t want to unnecessarily isolate ourselves too much. This constant need to assess what’s best for us to do is hard and exhausting work. In the end, because of the uncertainty of our symptoms, most of us must simply make an educated guess and hope for the best.

2. Uncertainty about how we’ll feel each day…”

To read more and suggestions for helping:
https://www.psychologytoday.com/blog/turning-straw-gold/201404/how-chronic-pain-and-illness-fan-the-flames-uncertainty

Happiness and love

After a grueling two and a half weeks of struggling with gluten-induced symptoms, I am finally remembering what it is to feel good.

I’d forgotten.

The last 2.5 weeks I’ve been exhausted, in pain, disoriented, and depressed. I’ve felt so bad I missed quite a few days of work, and been lying comatose on the couch, with only ibuprofen and a heating pad for company. The days I have gone to work, it’s been such a struggle to get out of bed and get through the day. In a rather dramatic moment of journaling, I likened it to dragging my broken body along the ground by the bloody stumps of my fingers.

Those of you who struggle with unseen chronic illness know what I mean.

This holiday season, it deeply hurt my heart the degree to which some family members dismissed my illness as being all in my head or said nasty things behind my back. I still feel quite sad and upset by it.

But other family members were extremely supportive, and actively sought out ways to help keep me safe, without my even asking. Even though it would have been easier transportation wise to have Christmas dinner in Seattle, many drove 60 miles so we could have dinner together in my house – the only place I can safely eat right now.

My partner has been extremely supportive, organizing the dinner at our house. She regularly goes out of her way to make sure that I am safe from being poisoned by gluten. She sees first hand what it does to me, how debilitating and painful it is, and does everything she can to make sure I don’t get sick. She still eats gluten at other places but washes her hands and face before leaving, and brushes her teeth when she gets home. She is vigilant in the shopping, making sure to read the labels each time. She watches what I eat, and if she has doubts she double checks with me if I’ve made sure its safe. She doesn’t hold it against me that I can’t go out to eat. If she wants to eat something with gluten in the house, she always asks first to make sure I won’t be tempted and then takes precautions, like spreading out a large towel that she eats over then puts immediately into the washing machine.

That is love.

My co-workers have also been very sympathetic. They too see how terribly gluten affects me. Normally I laugh and joke a lot, but the last few weeks I’ve been a wreak. They have really gone out of their way to try to make it safe for me. They rarely bring anything with gluten into our area, and if they do, clean up immediately. They have been genuinely wanting to know how I am and been quite understanding about my missing work recently.

Today, my partner picked me up after work. As we were driving home, the sunset was glorious and we drove to a point we could see it better. The capitol was lit up all firey and the clouds were gorgeous gold and pink. We kissed and watched the sunset. She loved my cheese and green onion scones I made yesterday for the firs time, so we ran to the store to get more ingredients. She dropped me off, and went out to play poker with some friends.

Happy to have a night alone and clean kitchen in which to play, I put on Lie to Me (my favorite show right now), and made scones. Gouda, green onion, and smoked paprika scones. Rather than spending the energy on cooking dinner, I just ate baked tempeh with avocado and ketchup at the kitchen counter. It felt so decadent! Then I curled up on the couch with a lovely cup of tea, and watched more Lie to Me. When the timer went off for the scones, I checked the oven…and it was empty! I’d forgotten the scones in the freezer – oops! But I was able to just laugh, and let them thaw a bit then popped them in the oven. I took a shower and I even found myself singing! My lovely girlfriend came home and we shared the first bites of scone – a new recipe and it was delicious!

I am thankful for these things. People, including myself, that care enough to protect me from gluten. Feeling good enough to actually enjoy a shower. A simple evening making scones.

This is happiness to me now.