When things fall apart and you want to throw things

Last week, I picked up When Things Fall Apart by Pema Chöndrön, because things fell apart during my recent flare. Namely, my false sense of security.

Over the last year, I’ve rebuilt my life to accommodate MCAS and avoid triggers. My steady progress boosted my confidence in my ability to manage this disease. I thought I had woven my own safety net with a series of daily precautions.

But this last major reaction sliced that safety net in half and I plummeted without knowing how far I would fall. Overnight, I lost my ability to work, eat, or sleep. I reached for help but the hospital wasn’t safe and the emergency doctors were reluctant to do anything for fear it would make me worse. No one, not even one of the world’s leading MCAS specialists, could tell me for certain what was happening or how to fix it.

I was terrified.

So I read  When Things Fall Apart in search of peace. I found comfort in Pema’s wise words, but the funny thing is I don’t remember any of them. The only thing I distinctly remember is that she threw a rock at her husband when he told her he was having an affair and he wanted a divorce.

I never scored well on reading comprehension.

Upon further reflection, I realized that’s how I felt when I lost my sense of security. I wanted to throw things too. Specifically, I wanted to whip a full set of ceramic dinner plates against a wall like frisbees. The pain was too much, the situation was too scary, and I wanted to protest its unfairness.

I think I’m supposed to just acknowledge these feelings. However, I’m still holding out for a box of plates and a sturdy wall. My second takeaway from the book is I think I’m still eligible to become a Buddhist nun.

I probably should re-read the book.

Gift guide for mast cell disease

Like many people with chronic illness, my life is shaped by fatigue, pain, and mobility issues. However, mast cell “allergies” or triggers present unique challenges with life threatening consequences. As a result, most people are downright scared to give me a gift.

Well, technically everyone. On my birthday this year. I’m not still bitter.

So here is my gift guide for people with mast cell disease. Because I think we deserve gifts!

Practical gifts

  • Delivery services

Such as an Amazon Prime membership or Instacart membership. Leaving the house is difficult for people with mast cell disease. Delivery services allow us to avoid a myriad of triggers, while getting what we need.

  • Air filter

The most expensive item on my wishlist is an Austin Air Filter. I have one in my enclosed office at work, creating a safe space  for me to breathe.

  • Vogmask

I always carry a Vogmask in my purse to filter out chemicals, smoke, and pollen. It’s a little embarrassing to wear in public, but Vogmask has a variety of fun designs. It’s great to have more than one to match your outfit!

Self-care gifts

  • Epsom salt

Epsom salt baths are not only relaxing, but they can soothe muscles and reduce swelling. Most people with mast cell disease can tolerate pure Epsom salt (no added ingredients), although we need to be careful with water temperature (not too hot).

  • Vanicream

Winter is coming and every year it destroys my sensitive skin. Vanicream was developed at the Mayo Clinic, and is my personal favorite moisturizer.

  • Books, music, and movies

These gifts help us pass the time, escape our realities, and sometimes find inspiration. E-book readers are good for people who are sensitive to book smells or have trouble holding books.

Gifts of love and support

  • Cards with handwritten notes

Sometimes it’s easier to write the touchy feely stuff than say it aloud. I cherish cards much more having been through tough experiences with mast cell disease.

  • Homemade gifts

Particularly those we can admire from our couch or bed, where we spend most of our time. Consider incorporating our favorite colors, or quotes.

  • A framed photo or art piece

Remind us what we are fighting for! Beauty, inspiration, nostalgia.

Bonus gifts

  • Toys for pets

Most spoonies I know have pets that are incredible companions. We find joy in making our pets happy.

The no-no list:

  • Anything that smells
  • Anything containing health advice
  • Plants
  • Food
  • Clothes, beauty products, or jewelry
  • Gift cards to stores we cannot enter due to allergies or mobility issues. If you’re going to give a gift to an online store, please consider the shipping fee.

There are exceptions if you’re willing to also give your time and energy. For example:

  • Buy a few clothing items for the recipient to choose from and offer to return/exchange what doesn’t work. Soft, loose clothing is best.
  • Restock their favorite products. Take the time to find out exactly what they enjoy most.
  • Fulfill a specific request.

Whatever you do, don’t make us feel guilty if your gift makes us sick. Sometimes our triggers change and we are surprised as you are. Thoughtfulness, flexibility, and communication goes a long way with mast cell disease.

Please note, this is a general guide. Not everyone with mast cell disease will benefit from all of these gifts. Our triggers vary by individual.

So I am curious to know–what is on your wish list?

P.S. I am not sponsored buy any of the brands listed. Or anyone really. I certainly would like to be, if it doesn’t require selling my soul.