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Uncertainty is part of life, but as human beings we do our best to create as much certainty as we can for a sense of security and peace of mind. For those of us who live with one or more autoimmune conditions, one uncertainty we deal with is that we never really know how we’ll feel. There are good days, and there are bad days.

It’s easy to feel alone and frustrated when you’re not feeling well, and unable to keep up with your own life at times. I am sharing my own challenges and experiences below to help others who struggle with similar issues feel less alone, and to help increase awareness about what it may be like to live with autoimmunity.

1. The F-Word – Fatigue

A symptom common to basically all autoimmunity is fatigue that is beyond tired. Your body feels like lead and you need to lie down. This fatigue is sometimes worse in the mornings and you need to ease into your day, only reaching peak productivity later in the day when others are ready for lunch.

During a flare, which is when your immune systems is extra ramped up and stealing even more of your energy than usual, making you flat out tired. A low-grade fever and a foggy mind may be companions to the fatigue, this triple threat makes sure you get nothing done! All you can do it surrender to bed and rely on family members, frozen emergency meals, or take out, to feed yourself and the family. Tomorrow is another day.

2. Fear of Making Plans

You’ve had a stretch of good days, or weeks, and almost feel like your normal self. It feels great to feel good and you make plans to travel, host dinner parties, go to events, well normal stuff people do, only to dearly regret it as the day comes if it’s a bad one… 

Once this has happened as few times, this thing I call “fear of making plans” set in and you hesitate to make commitments since you don’t know how you’ll feel when the day comes. This fear can take a toll on your social and professional life. The solution I have come to accept is to go ahead and make plans and accept that you’ll just reschedule or cancel if needed. That’s it. 

3. Feeling Guilty

I’m not particularly good at asking for help, and it’s very frustrating not to be able to do what I normally should be able to do myself because I am pacing myself (to avoid a flare), or because I am not feeling well. Most autoimmunity is invisible, or not obvious, and you don’t look sick. It is easy to end up second guessing yourself and wondering if you’re just lazy… You feel guilty for not being able to consistently do “your share” at home or at work. This is a tough one and requires a large dose of surrender and recognizing your value for who you are, not what you do.

What is Autoimmunity?

Autoimmunity is when your immune system attacks your own tissue, and where that tissue is located in your body gives the conditions it’s name. Psoriasis if it’s your skin, rheumatoid arthritis if it’s your joints, Hashimotos thyroiditis, if it’s your thyroid, and so on. 

As women, we are much more likely than men to get an autoimmune disease. Autoimmune disease impacts approximately 8% of the population and of those almost 80% are women. This means that approximately 1 in 8 women have an autoimmune condition. The real number may be even higher since it often takes a long time to get a diagnosis. Mary J. Shomon, the author of “Living Well with Autoimmune Disease”, coined the phrase “Super Symptoms” for symptoms shared by most autoimmune diseases. You can read more about those symptoms in my post on Autoimmune Super Symptoms.

Keyword is Pacing

Whether you have a diagnosis or not, doesn’t matter. If you struggle with energy, focus and other symptoms, the key to living life well, at least for me, is to know my limits and pace myself, especially when I’m feeling good to avoid a crash.

While pacing yourself, and not taking on too much, I suggest you use this time to develop your inner life, or wisdom practice. Find a meditation you resonate with, practice deep breathing, do automatic writing (where you just let words flow on to the page bypassing your mind), etc. Just spend time being.

The 17 Symptoms Common To Most Autoimmune Diseases

There is nothing super in the conventional use of that word with the symptoms common to most autoimmune diseases. In fact, they are pretty horrible. Here the word “super” refers to symptoms that lie “above” other symptoms that are more specific to each autoimmune disease.

The 17 Super-Symptoms Common To Most Autoimmune Diseases

Mary J. Shomon, in her book “Living Well with Autoimmune Disease” named these symptoms common to most autoimmune diseases, super-symptoms. The 17 Super-symptoms are:

1. Fatigue
2. General Muscle Weakness
3. Recurrent Miscarriage
4. Skin Rashes
5. Rash, Itchy Skin, Hives

6. Dry Mouth
7. Low-Grade Fever
8. Depression
9. Brain Fog
10. Hair Loss

11. Dry Eyes
12. Shortness of Breath
13. Palpitations
14. Weight Loss
15. Infections (urinary, gum, skin, vaginal, viruses)

16. Joint and/or Muscle Pain
17. Numbness and/or Tingling in Hands and Feet

What these super-symptoms have in common is that they are the result of an immune system that is upregulated, since it thinks that your own tissues and organs are “foreign invaders” and must be taken out. Part of the immune response is systemic, affecting the entire body, outside of the organ or tissue being attacked, and that is what is experienced with these super-symptoms.

Calm Your Immune System with Anti-inflammatory Foods

You will likely not have all of them, but if you check at least a couple and are unwell and your doctor is not able to figure out what is wrong with you, you may have autoimmunity going on. If that is the case, or if you have received a diagnosis that you have one of the more than 100 autoimmune diseases, give anti-inflammatory eating a try and see what happens. Autoimmune disease is disproportionately common in women and runs in families.

Anti-inflammatory eating is safe, effective, and has the power to cool inflammation. You can think of inflammation as something hot, or a fire. Inflammatory foods fuel that fire, such as highly processed foods. Anti-inflammatory foods cools, or pour water, on the fire, such as dark leafy greens.

You want to eat more of the foods that dampen the fire, which is why we call those foods anti-inflammatory. You can find anti-inflammatory recipes on my food blog Eat.Live.Cool. and there are many cookbooks on the topic.

This cooling down of inflammation can prevent, reverse or reduce symptoms of inflammation, which is what makes us feel lousy.

Going Anti-inflammatory is Good for Everyone

Since inflammation is linked to basically all chronic and degenerative conditions impacting us as a collective these days. I am talking about diabetes, cardiovascular disease, depression, and Alzheimer’s to name but a few.

Inflammation, the chronic and often hidden kind smolders beneath the surface and also weighs on those who don’t have autoimmunity. This type of inflammation makes us tired, achy, brain-foggy, gain weight and it speeds aging, so there are no reasons NOT to eat and live anti-inflammatory in my mind.

In fact, everyone will benefit by going anti-inflammatory, but it is especially important if you suspect or know, that you have an autoimmune disease.

Autoimmune Disease is a Process

Autoimmune disease doesn’t happen overnight. It is a process. Dr. Datis Kharrazian explains the three stages of autoimmune disease, wherein stage one and two tissue damage has not yet occurred or is not significant enough to be detected by tests, leading to doctors not knowing what is wrong with you since they can’t see it on their tests.

But why wait for symptoms and a diagnosis when you can start eating and living anti-inflammatory today and see if you feel better. Once tissue or organ damage has occurred it is irreversible. Instead, take charge of what you have the power over, and what you put into your body plays a huge role in how we feel. This is especially true when we are struggling with our health.

Don’t Forget Anti-inflammatory Living

It’s easy to focus on just the food. But I urge you not to forget that leading an anti-inflammatory lifestyle is as important as what we eat. In fact, the most pristine food going into a body that does not get more than 6 hours of sleep each night, and is constantly stressed out and dehydrated, will not be able to reduce much inflammation. The anti-inflammatory lifestyle choices you make, allows your body to receive the anti-inflammatory foods you eat.

You may have heard this a hundred times, but it really matters how much sleep you get, how much water you drink, and the stress level you experience.

Top 3 Anti-inflammatory Lifestyle Behaviours

1. Get Enough Sleep. Go to bed early, aim to be in bed by 9.30 pm – 10 pm.
2. Move Every Day. It doesn’t have to be called exercise, require a change of clothes and a water bottle. Just move more during your day, take the stairs, walk shorter distances instead of driving. Make a habit of moving naturally throughout your day.
3. Manage Stress. Consciously use your breath pattern to take you from stressed out to calm.

Recap

By choosing to eat and live with an anti-inflammatory lens you can feel better by reducing symptoms of inflammation. This is especially important if you know, or suspect you have an autoimmune disease. The 17 super-symptoms that are common to most autoimmune diseases may give you a clue. You can do this one anti-inflammatory food at a time! 🙂