May 14, 2013 in Living with Autoimmune Disease
It’s a fact of human nature that we tend to notice what’s wrong, more than we notice what’s right. When something gets better, we often forget it was ever a problem. I’ve been a massage therapist for 12 years and have seen this many times. A client will come in with a sore shoulder. I’ll work on it during our session. When the client returns the following week, I ask about the shoulder, and they say, “What do you mean?” I remind them it was sore last week, and they say, “Oh, right! I forgot all about it. It felt better the next day.”
This same tendency happens with autoimmune disease symptoms. Although there are overnight success stories in the paleo community, for most of us, improvements are slow and incremental. I have rheumatoid arthritis. In the past year, my symptoms have improved 90%, but those improvements were only notable month to month, not day to day. The way I noticed was by keeping a symptom journal – two actually. One is a daily journal where I write down how I’m feeling and also anything new I’m doing to try to improve my health. The other is a monthly journal – at the end of each month, I review my daily journal and summarize. It’s this second journal that shows my progress, and keeps me heartened and motivated. There have also been times when it has shown plateaus in my progress, and that is when I look for the next step in my healing protocol. For example, after 6 months on the GAPS diet, my progress plateaued, so I went on the Paleo Autoimmune Protocol and I started to improve again.
What to Include in a Daily Symptom Tracking Journal
- Sleep quality: Did you fall asleep easily or did you have insomnia? How many hours did you sleep? Did you wake often or sleep deeply? Any muscle cramps or pain that woke you?
- Waking state: Did you wake feeling refreshed or did you feel groggy? Any morning stiffness? If yes, what level and how long did it last?
- Pain: Rate your pain on a scale of 0-5, and document where in your body you are feeling it.
- Mental state: Are you experiencing brain fog or is your mind clear? How is your memory? Concentration?
- Emotional state: Are you happy, sad, angry, depressed, numb? Is your mood stable or swinging from one state to another?
- Medication: If you are on any PRN medications (meaning that you take them only as needed), write down when you need them and what dose. If you are on daily prescribed medication, your need for these might change as you heal. Work with your doctor to see if you can reduce or eliminate these safely. The ability to do this varies based on the individual and purpose of the medication.
- Energy levels: Do you get tired during the day? Do you need a nap? Do you feel caffeine-dependent? Are you hyperactive? Or is your energy strong and balanced throughout the day?
- Exercise: Are you able to exercise? If yes, what form did you do today and for how long?
- Digestive state: Any bloating? Indigestion? Constipation? Diarrhea? Discomfort?
- Skin condition: Any increase or decrease in rashes, acne or eczema? Is your skin drier than usual or starting to glow with health?
- Dietary changes: Did you start any new supplements? Any new foods? Did you remove any new foods from your diet? Did you eat out at a restaurant (often a source of hidden ingredients)?
- Lifestyle: Did you meditate? Take time to relax? Do something that brought you joy? Take a bath? Get outside? Endure a stressful situation?
- Detox: Have you made any changes to remove toxins from your body or your lifestyle? Epsom salt bath? Coffee enema? Start the no-poo method? Start using homemade beauty products instead of storebought?
- Mark the day: Keep track of how long you’ve been on the Paleo Diet and/or Paleo Autoimmune Protocol. It’s empowering to see yourself pass markers like 30 days, 6 months, 1 year.
- Monthly summary: At the end of the month, summarize how you felt and see how it compares to prior months.
- Documentation: You can use a notebook and keep this journal by hand, or use any word processing program. There are also free websites you can join, if you prefer to do it online, and Symple is a free app for the iphone.
- Laughter is the Best Medicine: This blog is a fun one to follow.
No matter how difficult our life is, there is always something beautiful happening as well. Sometimes, we are so immersed in our own pain, we can’t see it. A gratitude journal is a practice of looking beyond ourselves. Adyashanti is a meditation teacher who tells the story of a couple who is fighting at the beach. They’re so mad at each other, they experience nothing else. They can’t feel the sun warm their skin, smell the salt air, hear the ocean waves, see the sandpipers dancing along the shore, or hear the children laughing as they build a sandcastle. Their vision has shut out the world.
As someone who has experienced excruciating pain and cried every day as I came to terms with having such a scary diagnosis, I know what it feels like to live in that vortex. It’s not a pleasant place to be. So, I started a gratitude journal. Every day, I write down 3 things for which I’m grateful. Here’s the catch: be specific and try and choose something different every day. Sarah Ban Breathnach, author of the book Simple Abundance, says: “We think it’s the big moments that define our lives – the promotion, the new baby, the renovated kitchen, the wedding. But the narrative of our lives is written in the small, the simple, the common. The overlooked. The discarded. The reclaimed.”
Here are some excerpts from my gratitude journal:
- The way the valley smells sweet when the trees start to bloom in the spring.
- My husband kissing me on the cheek for no reason.
- On my walk today, a neighbor’s cat came running toward me, purring all the way.
- Last night, I slept without pain for the first time since the onset of RA.
- A friend invited me over for dinner and gathered recipes online to be sure everything she served would meet the autoimmune protocol.
- Seeing a comic that made me laugh out loud.
There is nothing too small for your gratitude journal. It’s about noticing the moments that bring joy, peace and beauty into our lives.
Let it Out Journal
As a writer, this is a form of journaling that has helped me my whole life. If you have an autoimmune disease, it’s by nature an emotional experience, and one that friends and family don’t always understand. Your journal is a place where you can write whatever you’re thinking and feeling, without censoring yourself. It can be a powerful way to let go of the pressure than can build up inside. You don’t even need to know what you’re going to write ahead of time. Just put pen to paper, or fingers to keyboard, and let the words flow.
|My blog Phoenix Helix focuses on healing autoimmune disease through diet and lifestyle. The Phoenix represents rising from the ashes. The Helix represents the magic of epigenetics – our ability to change the expression of our genes and therefore our health.|