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Thursday, December 21, 2023

Holiday Tips, Support, and Fun for the Chronically Ill


During this busy season, I am sharing here a wide range of holiday tips, support, and ideas for fun from past posts and past years, to help you through this coming week of Christmas and New Year's celebrations.

[I haven't been posting much here recently because I am still stuck in this awful relapse that began in mid-October. I've spent months with constant flu-like aches, lying on the couch, so my life has been very limited. I've realized that yeast overgrowth/candida is still at the root of this latest relapse, so I am on an extremely strict diet now: pretty much just meat, fish, and seafood, plus some cruciferous vegetables. I'm feeling better, my energy is better (thanks to working all year on normalizing thyroid function), but I still have thrush on my tongue and flu-like aches. Fingers crossed this clears up by Sunday so I can enjoy Christmas with my family!]

First up, the part of the holidays I struggle with the most (and many of you, too, from your posts and comments) is family relationships, which can be challenging when you're chronically ill. Those challenges multiply with the stresses and expectations of the holiday season. That's why I wrote Managing Family Relationships - Holidays and Beyond, which is excerpted from my book. This article/chapter provides practical tips to help you not only manage relationships but even enjoy the holiday season, in your own way and within your own limits.

Two years ago, I collected Chronic Illness Tips and Support (and Fun!) from other chronic illness bloggers and writers. Check out that round-up of support, practical advice, and some time-out fun, too. There is a lot of collective wisdom in the large chronic illness community!

And here is another round-up from other chronic illness bloggers: Chronically Ill Holiday Gifts and Tips, with some great posts from other bloggers about coping, planning and preparation, gift ideas, and support.

 I posted two Gift Guides here on my own blog this month: Chronic Illness Holiday Gift Guide ( I got some of these for my step-mom who's dealing with chronic pain) and Gifts Created by and for Spoonies. It might be too late to buy gifts for others, but you can put your new gift cards to good use! 


Finally, when you just need to take a break from all the activity and people and noise, check out Movies and TV for the Holidays (or Not!), my own collection for the season. I included some of my favorite holiday movies, old and new, and some outstanding, uplifting non-holiday movies and TV shows, if you just need to escape for a bit. And I will add one more holiday movie to that list - I just started watching Last Christmas, and it is just what I needed: a fun, uplifting seasonal romcom. Re-reading this list reminds me of how great these films and shows were!

OK, that's it for me until after Christmas. I still have a few more decorations to put up, cooking to do (just a little this year), and a few more gifts to wrap. I'm trying to pace myself!

How are you doing this holiday season?

Do you have any tips or favorite holiday movies and TV shows?

Please share in the comments.

Enjoy the holiday season, in whatever way you can!

Wednesday, December 13, 2023

Chronic Illness Vlog: Still Relapsed, Still Flat, Trying Treatments


I recorded a vlog last week, showing an honest view of my life with chronic illness, which is currently quite restricted. My months-long relapse defined by immune activation (especially almost-constant, flu-like aches) continues. I had some really bad days and some not-too-horrible days, though I spent most of my time horizontal on the couch. I did manage a few brief outings last week, plus some online shopping and other holiday to-do's from the couch. Most importantly, I was trying two new supplements that I think are helping, plus a prescription from my ME/CFS specialist to try to break this immune activation cycle I am stuck in.

You can watch the video on YouTube or here below:


You'll see this vlog is a bit longer than my usual ones because I tried to explain as much as I could about the treatments I am trying. As always, the notes below the video on YouTube include lots of links to more information and anything I mentioned in the video. I will reprint those here:

Article on treating severe ME from Norway, plus a look into the future 

Diagnosing and Treating Thyroid Dysfunction in ME/CFS and Long-COVID 

Iodoral (iodine) for thyroid

Treating Immune Dysfunction: This blog post includes information both on improving immune function and on treating underlying infections

Effective Treatments for Yeast Overgrowth/Candida  

Diagnosing & Treating Orthostatic Intolerance (OI) blog post 

Chronic Illness Tracking: How I Feel, Symptoms, and Treatments 

My post from last year on Relapses and Recoveries 

My local bookstore interviews me about life with chronic illness and my book

I'm still achy today, still on the couch. I did sit up to record a couple of short book videos but am back to flat now (and more achy). 

 

How was YOUR week?
How are you doing?

Please leave a comment below.

You can also connect with me on Facebook and Twitter.

 

Monday, December 11, 2023

Movie Monday: Leave the World Behind

Saturday night, my husband and I watched the new Netflix movie Leave the World Behind, an adaptation of the novel by the same name, which was a finalist for the 2020 National Book Award (my review of the book--no spoilers--here). Like the book, this 2 1/2-hour thriller was full of tension, though the movie built on the foundation provided by the novel.

Amanda Sanford, played by Julia Roberts, surprises her husband Clay, played by Ethan Hawke, with a weekend getaway when she rents a luxurious house on Long Island for them and their two teen kids. As they leave the city behind, each family member is engrossed in their own digital world in the car. They arrive to find the house is even more beautiful than it appeared in the listing, complete with a pool and enormous TV. It's relaxing at first, as the kids play in the pool, and Amanda and Clay begin to unwind, but strange, frightening things begin to happen when the family goes to the local beach the next day. Back at the house, they find the WiFi, cell service, and TV are all out. After the kids go to bed, Amanda and Clay are relaxing with a game and copious amounts of wine when the doorbell rings late at night, startling them. It's a a Black man, who introduces himself as G.H. Scott (played by Mahershala Ali), and his daughter, Ruth (played by Myha'la). Amanda is clearly suspicious that this expensive home is owned by a Black family and shook up to have them show up at the door unannounced. They explain that the power is out across the city, so they returned to their home on Long Island, where it would be safer. Since they did rent the house to the Sanfords, G.H. offers to stay in the basement apartment and refund some of their money, and the Amanda reluctantly agrees. The next day, more strange things happen, and the group of six realize that something very frightening is happening in the larger world, though they don't know exactly what. Forced together by circumstances, they begin to get to know each other and work together to protect their families from this unknown danger.

All of this adds up to a lot of suspense and edgy tension that keeps ratcheting up, as stranger things begin to happen, and it's clear this is not just a simple power outage. In fact, I had very bizarre dreams that night after watching it! It's a long movie, and the underlying feeling of dread just keeps building. It's not just a suspense movie, though. It's also a character study, of what happens when people are randomly stuck together during a crisis, delving into latent racism, class issues, compassion versus self-protection, and more. The novel was very vague about what was causing the problems, and there wasn't a whole lot of action; it was mostly about the characters and the ambiguous tension. Here, we get a lot more action, and while the disaster is never completely defined, there are a lot more hints and information provided as to what is or might be happening in the wider world. In fact, the novel just sort of ended, with no answers, so the movie is a bit more satisfying in providing some hints of what is happening and how things might go in the near future. I enjoyed the novel (on audio) and my husband hadn't read it, and we were riveted by this gripping movie with its all-star cast that is both suspenseful and thought-provoking.

Leave the World Behind was released in limited theaters and is now showing on Netflix.


Saturday, December 09, 2023

Gifts Created by and for Spoonies (Newly Updated!)


(Note: spoonie refers to anyone living with chronic illness and disability.) 

This holiday season, why not help to support your fellow chronic illness peeps by purchasing cool, unique gifts created by those with chronic illness and disabilities? Or maybe you deserve the gift of self-care for the new year!

When I put out a call for gifts created and sold by those with chronic illness, I was inundated with all sorts of wonderfully creative items! Some are made specifically with spoonies in mind and others would make great gifts for anyone on your list. And you'll be helping to support fellow spoonies! Check out these awesome items:

Books

Suzan L. Jackson (I had to include my own book, too!)

Finding a New Normal: Living Your Best Life with Chronic Illness – guidance on emotional coping, daily living, relationships, and more.

Available anywhere books are sold, in paperback and all e-book formats.

Available here


Melissa Gijsbers

Melissa's son has ME/CFS, and she wrote a children's book about his experience, 3, 2, 1 ... Done, plus lots of other children's books and books for writers.


Kristin Houlihan

Kristin has written Lift the Mask: a short collection of poetry and lyrical prose which is very brain fog friendly! "Poetic and heartfelt musings on life, parenting, and faith, told through the lens of a chronically ill and disabled mom."

 

Lene Anderson

Lene is an award-winning writer with rheumatoid arthritis (RA), She has several books, including Your Life with Rheumatoid Arthritis: Tips for Managing Treatment, Side Effects, and Pain and Chronic Christmas: Surviving the Holidays with Chronic Illness, which sounds very helpful right about now!


Amy Arthur

Amy has a brand-new book coming out December 28 (available for pre-order now), Pace Yourself: How to have energy in an exhausting world. The link goes to the UK Amazon website, but they do also deliver to the U.S. (and probably other countries as well).

 

Anna Wood

25 Birds, a beautiful book of photographs taken by Anna, who is housebound with ME/CFS, of birds in her garden over the course of a year. Available in the UK. Also available in the U.S. (and possibly other countries).

 

K.T. King

Fiction (including Little Eden series) and nonfiction (including 21st Century Prayers series), available in paperback and e-book. Author has ME/CFS.

Available here.


JK Morgan

This chronically ill writer has published novels, short stories, poetry, and more. You can read all about her and her work on her website. Many of her varied books are available on Amazon.

 

Kathleen O’Shea

So Much More Than a Headache: Understanding Migraine Through Literature

Available in paperback and e-book.


Victoria Mack

5-Minute Gratitude Journal for People with Chronic Illness - A beautiful journal, with inspiring and supportive prompts to help with mindfulness, gratitude, and self-care.

Available here.

 

Infinitely Chelle – Chelle del Rosario

Beautiful notebooks and reading journals (wide variety with fun prompts).

Available here.


Jen Hardy’s Planners

3 planners: Path to Happiness 5-year Journal, Chronic Illness Journal for Moms, and a Business Planner.

Available here.

 

Jewelry


Words as Medicine Shop – Etsy – Christina B.

Wide variety of earrings – all different kinds of themes, shapes, colors, including holiday themes. I love earrings and want all of these! I ordered the gingerbread men/peppermints last year.

Available here


(Also see under Other Gifts - several sellers with multiple items include jewelry)


Other Gifts

Crafty Miss B – Etsy - Beth

Wide variety of hand-crafted items, made with embroidery, wood, metal, and fabric. Gifts include bookmarks, jewelry, decorations and ornaments. Creator has ME/CFS. She is on a break but will return in the new year.

Only ships in UK.

Available here.


FUMS – Kathy Reagan Young (has MS)

Wide variety of gifts with the FUMS logo, including hats, tote bags & fanny packs, clothing, masks, and more.

Available here


SunnyAuntCreations- 

Her RedBubble shop features beautiful watercolors on clothing, cards, stickers, and other products, and her Etsy shop includes watercolor prints and cards. Her work is beautiful!


BibiPins - 

Black, queer, disabled creator offers a wide range of gift items, including stickers, pins, stationery, compression garments, and much more! Full shop here.

 

InPhusions - 

Botanical body butters aimed at others with skin conditions and pain, from a Black, queer, trans, disabled creator. See and order products here.


Grace and Magic – Etsy – Katherine Grace

Beautifully designed planners, journals, notebooks, and trackers, available in print, digital, and printable pages to help with all kinds of planning, organizing, tracking, and self-care.

Available here.


Siren Blossoms – Heather Wright

A wide variety of printables, jewelry, and books, available through Etsy, Amazon, and other platforms. All links here:

Available here


Achy Smile Shop – Erica Nicole Carrasco (chronic migraine)

Beautifully-designed migraine-themed shirts, stickers, hats, bracelets, and phone cases.

Available here.

 

RatnaRaniBracelets

The creator has ME/CFS and offers a wide variety of artwork, jewelry, clothing, skin serums, and more. Visit her Etsy shop.

 

Chronic Illness Shop Directory:

 

Ability Shop: Chronic Illness and Disability-Owned Small Business Directory

A directory of businesses of gifts, businesses, books, art, and services from those with chronic illness and disabilities.

Available here.


WOW! So many unique gifts from so many creative folks with chronic illness and disabilities! I love the idea of getting cool gifts (for others and for myself) while also helping to support fellow spoonies. 

Happy Shopping!


And if YOU create gifts or other items that are available for sale and not on this list, please include your link in the comments below (if you have trouble leaving a comment on a mobile device, try using a computer).