Living with chronic illness

Routine – Routine – Routine – Makes the MCAS Day Go Better

Having a steady routine is one of the best ways to calm your system when you have Mast Cell Activation Syndrome (MCAS) or other chronic conditions. This post outlines the benefits of sticking to a daily routine, with some tips for making it doable.

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Here are some of the aspects of my daily routine that I have found helpful:

Stick to a daily routine

I know this is somewhat obvious in a post about daily routines, but I’m going to spell it out: You will do better with a daily routine. It’s okay to deviate from your routine occasionally just to mix things up. But according to this study, one of the triggers for mast cell activation is deviating from your natural circadian rhythm. By having a set routine where you generally get up, eat, exercise, and go to bed at the same time each day you bring your body’s functions into alignment with what your mast cells think is supposed to happen at that time.

Mast cells react to any stimuli, no matter how subtle. You might not think it is a big deal to occasionally go to sleep later, or skip your daily walk. But I’ve learned the hard way too many times that when I deviate from my routine my MCAS bucket overflows quicker.

Having a set routine can definitely be more tricky if you are a parent of young children. As a mom of three kids including twins, I know how routines can go right out the window! So file this information in the category of helpful ideas, not “shoulds” if you parent young children. Now that my kids are grown I have more freedom to listen to what my body needs.

Avoid sudden changes to your routine

One of my big mast cell triggers is jumping out of bed too fast and (just about) fainting due to the extreme change from horizontal to vertical. I may have mild postural orthostatic tachycardia syndrome (POTS) because my daughters have it. So here is what a slow start to the day looks like: turning over onto my side in bed, sitting up, and then waiting for a few breath cycles before standing up.

Ideally, after I use the bathroom in the morning then I lie back down in bed and meditate for a few minutes while my body adjusts to being awake. That extra 5-10 minutes in bed before starting my day adds a ton of value to how I feel and how full my bucket is. (And if you are curious about this bucket I keep mentioning, check out this post.)

The key is listening to your body. Once I transitioned to going to bed when I was tired I naturally started waking up without an alarm clock. So, I don’t fall back asleep during that extra 5-10 minutes of time in bed in the morning.

The rest of the day I don’t have to be quite as careful about jumping up as first thing as in the morning. But if I lie down for meditation or yoga, I do have to be mindful when getting back up to a standing position.

Alternate movement and rest in your routine

I notice the best results when I alternate gentle movement with periods of sitting during the day. Too much sitting causes me to have back, shoulder, and neck pain. Too much activity causes flare-ups of muscle and joint pain. Too much of any one repetitive emotion causes me to experience an acute flare of a joint or muscle, which becomes a bigger problem when mast cells overreact to the perceived injury.

So, I’ve learned to alternate periods of sitting (like when I’m writing, reading, responding to email, or sewing, with periods of gentle movement (like putting in a load of laundry, cleaning one thing, doing gentle yoga stretches, checking inventory in the pantry, organizing a small area or task, watering my plants, etc.)

And in general, I can’t tolerate vigorous exercise. I used to be a competitive runner and nordic skier until I started to have mast cell issues in my early twenties. After many years of struggling to exercise, only to experience massive mast cell flares, I’ve come to peace with doing gentle movements like walking, yoga, and Qi gong.

What is MCAS?

Mast Cell Activation Syndrome (MCAS) is a chronic condition that affects all organ systems. MCAS is serious and disabling and people with MCAS experience often significant and debilitating symptoms daily, including anaphylaxis, which can be fatal.

MCAS is often found in combination with other chronic conditions such as Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS).

Frequently healthcare providers do not know about MCAS, and the tests for MCAS are problematic because they are not uniformly reliable. MCAS can be difficult to manage. Treatments include blocking mast cell mediators with anti-histamines and mast cell stabilizers, as well as avoiding triggers.

Check out this post on how to manage MCAS.

The bucket theory

The bucket theory offers a helpful analogy for understanding symptom reactions with MCAS.

Think of your body as an empty bucket that you want to keep from overflowing. Different foods and activities fill your histamine bucket at different speeds but they combine to form the total level of histamine in your body (how full your bucket is). A fuller bucket means you have more histamine symptoms. When you manage triggers, reduce exposure to known triggers, and take medications and supplements to reduce histamine, you can manage the level of your bucket.

Know your typical symptom progression

Knowing your symptom progression in a symptom flare is the key to developing your own rescue plan. In this post, I discuss how to determine your own symptom progression. Once you know what typically happens in your symptom progression you can design a rescue plan to address those symptoms.

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Fasting as part of a daily routine

Fasting in the morning really helps to reduce my overall inflammation and pain. So most days I fast from about 6 p.m. (after dinner) until 11:45 a.m. when I have lunch. That gives my gut a rest of almost 18 hours before I begin digesting food again, and intermittent fasting has been shown to reduce inflammation, improve immune function, and help blood sugar issues:

“… periods of fasting can limit inflammation, attenuates proinflammatory cytokines and immune cells, improve circulating glucose and lipid levels and reduce blood pressure. In addition to that, studies undertaken in animals and humans have suggested that fuel selection is altered and efficiency of metabolism is improved while oxidative stress is reduced.” NIH

In addition, fasting has been shown to reduce mast cell degranulation and histamine release. So, I get multiple benefits from fasting: reduced inflammation, better blood sugar, and less histamine release.

This post discusses the “best” diet for MCAS, which is going to be the least-restrictive diet that helps maintain your health.

Of course, you should ease into intermittent fasting under the care of a doctor or functional provider, and this post provides some good advice for beginning fasters.

My routine

So what is the ideal daily routine? That is going to vary from person to person because we are all uniquely different. But I will share my daily routine below so that you have an idea of how it could look. I recognize I am privileged that I can work from home and vary the activity of my day as my symptoms dictate. And as I mentioned above, when you are parenting small children the notion of routine is going to necessarily revolve around the needs of your child(ren).

  • 6 a.m. – Wake up, use the toilet, lie back down for 5-10 minutes to equilibrate, then get back up, and have my morning tea. I fast until 11:45 a.m. while alternating periods of movement with periods of stillness checking email, doing yoga, meditating, working, doing laundry, logging my symptoms / and MCAS reactions, etc.
  • 10 a.m. – Take a 20-minute walk outside with dog #1; resume working (interspersing some movement every hour or so)
  • 11:45 a.m. – Eat lunch
  • Continue working
  • 1:30 p.m. – Lie down with my legs up and take a 20-minute infrared sauna (get up slowly afterward)
  • Continue working or run errands
  • 3:30 p.m. – Take another 20-minute walk with dog #2
  • Work for another hour before making dinner and spending time with my husband
  • 7:30 p.m. – Take a detox bath and then watch a little YouTube or do a crossword puzzle
  • Wind down for bed
  • 9:30 p.m. lights out

What is your daily routine?

What is your daily routine? What works for your mast cell activation? I’d love for you to share in the comments below!

bleighton2

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