The Tremendous Mental Fatigue of Managing a Chronic Illness

The mental fatigue of managing a chronic illness can take a significant toll on your already precarious health. This post discussed strategies for reframing all that you need to manage.

If you’ve been following my blog I have been on a roll lately — posting fifty posts in the last two months. My goal is to publish the next fifty blog posts by the end of 2022. And when I’m in a good place with my MCAS (Mast Cell Activation Syndrome) writing comes easily. But when I run into a snag like lower energy, brain fog, or symptom flares my intentions to write go out the window. I want to be real about my journey because I know you are here because you too have a chronic illness. There are days when I manage things well and days when I don’t.

This week was challenging for several reasons. The Thanksgiving holiday meant making a lot of delicious food for my family that I can’t eat. It meant making my own separate tolerated low-histamine meals on top of that. It meant gathering with family, which is lovely but it added the extra layer of complexity of bringing my meals and snacks with me, driving long distances to be with family, and coordinating having an extra dog in the house. And I was still trying to maintain my blogging schedule on top of that!

By last night I had a significant symptom flare because my bucket was too full. The stress of all these little things plus trying a new food yesterday (goat cheese or chevre, which was delicious, but a no-no), cleaning up extra dog pee for the fourth time from a stressed older dog who is visiting us, and my husband being sick (so I was doing all of the normal household stuff) all added together to make my bucket overflow. I had a big mast cell flare last night complete with flushing, neuropathy, GI distress, and being awake from 1:30 a.m. on (bigtime insomnia).

So, I thought I would devote this post to a discussion about managing the mental fatigue of having a complex chronic illness like MCAS. Virtually every step of your day is impacted by having a chronic illness, and that means an added strain on your mental health.

The mental fatigue of managing meals

Meals are a big issue for those with MCAS. We all need to eat! If you are on a lower histamine diet, that means preparing certain foods, avoiding other foods, and spending extra mental energy on shopping, cooking, and mealtimes. If you are unsure of which foods you are reacting to you may be on an elimination diet, which can add additional stress about tracking symptom triggers. If you are a parent or caregiver you may be juggling making different types of meals to fit your family’s dietary situation.

I feel the extra stress with meals because virtually every lower histamine recipe I make I have to tweak to also fit a low-oxalate, high-fat diet too. So, I add “recipe development” to my already full plate!

One way I manage the stress around meals is to make dishes and freeze the extra portions so that they don’t build up as much histamine as leftovers in the fridge would. But last night I found that in the hubbub of making food for my family, I had neglected to keep track of my freezer meal inventory. I was down to a couple of choices, neither of which I wanted to eat!

My daughter, bless her, picked up on the little tune I was singing that went, “I don’t want to eat this, I don’t want to eat that, I have nothing I want to eat … la la la.” She asked me, “Is there something you have the ingredients for that I can make for you?” I was so grateful I burst into tears! She whipped up a batch of my lower histamine chicken lasagna for me, and I felt so cared for!

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 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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The mental fatigue of managing transitions

Every juncture in your day between doing this and the next thing is a transition. In a normal healthy body, you don’t think much of transitions because they just flow. But when you are managing a chronic illness you need to think ahead to be prepared for the transitions coming in your day so that you can set yourself up for success, bring the appropriate medications and supplies, and budget your energy. For instance:

• Am I dressed warm enough for the weather today? (cold intolerance)
• Am I dressed too warmly for the weather today? (heat intolerance)
• Do I have snacks packed for the car trip today? (dietary restrictions, histamine intolerance, blood sugar issues)
• Have I filled my water bottle? (staying hydrated)
• Have I prepared my electrolyte drink? (staying hydrated and neurological health)
• Am I going to be away from the house during a meal? (dietary restrictions, histamine intolerance, blood sugar issues)
• Who will I interact with today? (budgeting energy)
• Will I likely come in contact with environmental triggers today? Such as scents, EMFs, or pollen (histamine intolerance, MCAS)
• Do I need to prepare for certain interactions with people today? (budgeting energy, emotional stress triggers)
• Do I need to take a nap today to have enough energy for the late afternoon appointment I have? (budgeting energy, planning snacks)
• How full has my bucket been in the last day or so? Do I need to make adjustments to my diet or activity level today to make sure it doesn’t overflow?

All of these considerations take extra mental work to keep track of and manage. Needing to constantly be aware of the interrelation between foods, events, interactions, and transitions can be exhausting! 

The mental fatigue of managing caregiving

Being a parent or caregiver carries its own set of challenges because another person depends on you for their survival. So, in addition to budgeting your own time, energy, and resources you need to fit another person’s needs into the equation. I’ve been a parent for over two decades and a full-time caregiver for 11 of those years. I’ve learned firsthand how quickly things can go awry when you put your own chronic illness needs on the back burner for too long. Sometimes you don’t have a choice! But it is another factor to be aware of and manage mentally in the algebra of your day.

The mental fatigue of managing your own health

Keeping track of all of these details is a lot with a clear mind, but significantly harder when you have brain fog, chronic pain, or insufficient energy. It can be demoralizing to not be able to physically perform like you used to. It can be depressing to have limitations. And it can be overwhelming to manage extra aspects of life that healthy people can’t imagine. So how do you do it?

The first step is acknowledging your situation. Yes, it sucks. Yes, you have limited energy. Yes, you can’t do what other people can do. Yes, it is going to be extra work to stay on top of your symptoms today.

Second, it helps to have realistic expectations. Yes, managing the mental fatigue of chronic illness is another thing on your list. But when you focus on what is essential for your day you can be successful in what must happen. Some things will have to wait until a day when you have more energy, less pain, or an emptier bucket.

Then, try to plan into your day the elements that will make it doable. Today I’ve been up since 1:30 a.m. so a nap is definitely in the works!

Take things off your plate, delegate, and be okay with doing less. Focus on just today, because the present is really all you can control. Each day you will have a different amount of energy, level of pain, pressing need, appointment, or challenge. Adjust for today and try to stay mindful of this moment.

I don’t have it all figured out, and I have days where I just crash and burn.

What helps you manage the mental fatigue of your chronic illness? I’d love to hear what you have to say in the comments!

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This 240-page book chronicles Betsy’s journey solo backpacking the Superior Hiking Trail and overcoming nervous system dysregulation, gut dysbiosis, and Mast Cell Activation Syndrome symptoms to hike 328 miles successfully.

All preorder books will be signed by Betsy and shipped by December 15, 2024.

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Disclaimer

The preceding material does not constitute medical advice. This information is for information purposes only and is not a substitute for professional medical advice, diagnosis, cure, or treatment. Always seek advice from your medical doctor.