Wednesday, October 24, 2018

The body's bank account

Rare disease patients often refer to themselves as “zebras” due to the often referenced quote in medical circles “When you hear hoofbeats, think horses, not zebras.” That is true, but remember – there are many zebras out there, too, and we depend on physicians’ willingness to learn and partner with us to find diagnoses, treatments, and hopefully eventually cures for our rare diseases.
~Anna Hull


I talked before about the spoon theory of chronic illness. Today, I'm talking about another way to describe the difficulty of dealing with symptoms on a daily basis. This was written specifically about mast cell activation disorder, but I'll bet could work for lupus, chronic migraines, and other illnesses that fluctuate. It could also describe emotional energy that people use in a day.

Scientist and mast cell patient Lisa Klimas explains:
The problem is not just that I’m allergic to some foods. It’s that I’m not always allergic to the same foods as I was the day before. Or the same medications. Or the same environmental exposures. My reactions on a given day are the cumulative product of the amount of irritation my mast cells have experienced in the previous day or two. There is always a running tally in my mind...

For the sake of simplicity, let’s assume you have $100 in a bank account. Any activity that can cause mast cell activation has to be paid for. The cost is proportionate to the amount of activation. Getting a splinter: $2. Being hot: $10. Being in direct sunlight: $10. Standing up for 20 minutes while being hot in direct sunlight: $35. Cardiovascular exercise: $40. Arguing with your spouse: $60. Moderate pain experienced in your day to day life: $50. A painful medical procedure: $70. Mild cold: $40.

...You can make deposits into the bank with medications and physical changes. Getting enough sleep: $30. Wearing loose, comfortable clothes: $15. Doing orthostatic manuevers before standing up: $10. Taking baseline mast cell medications on your normal schedule: $50. Eating food that is warm but not hot: $15. Monitoring your exercise and stopping for breaks: $15. Wearing a cooling vest on a hot day: $20. Oral Benadryl: $25. IV Benadryl: $50. Steroids: $50.

So you have this running tally in your head all day long. When you start getting close to $100, you get stressed. You know you can’t afford to spend more than $100. Things that you could have done four hours ago safely are no longer safe. Things you could eat on a day spent relaxing at home inside with comfortable ambient temperature cannot be eaten if your apartment is too hot or if you are in a lot of pain.
She says that people who see her on different days, see her being able to eat different things and sometimes give her trouble for it, as if she's faking. As Lisa says, "WHO DOES THAT?"

Lisa: "Cost for being around someone who gives you s*** for not always having the same restrictions: $75."




A zebra bracelet for people with rare diseases

4 comments:

Linda B said...

It is interesting to read this, Tabatha. I know a few with differing chronic diseases, but also know friends who share sometimes how they feel physically. I would never question those feelings, am sad that someone thinks they could do so. Thanks for sharing.

laurasalas said...

Fascinating, Tabatha. My loved one with bipolar and Crohn's has many physical symptoms, and this whole way of framing illness really fits her situation, too.

Michelle Heidenrich Barnes said...

I bet another part of the problem is that acquaintances/coworkers/etc accept knowledge of someone's chronic condition upon first hearing about it, but then conveniently forget once the condition becomes invisible to them. Unless the "friend" is close enough to hear about the day-to-day ups and downs, it's just not on their radar. It's a tricky situation for sure.

Tabatha said...

Thanks, everyone! It's great to get to talk about having your body's "bank account" be the overriding principle in your life because some folks can find the lexicon helpful to describe their experiences and other folks can find it helpful in developing their understanding.