Redefining Our Relationship With Sickle Cell Anemia
One of the biggest breakthroughs I've had with sickle cell was through a conversation I had with a friend who has aspergers. He was telling about his experiences and I began to mention how bad I had it with sickle cell and he said something I didn't know how to use until recently. He told me that every mutation developed as evolutionary advantages and even if our circumstances were though there is still a way to use it as a beneficial tool.
At the time it was just annoying because the only advantage to sickle cell is immunity to malaria, which has no use in America, and which only applies to those with the trait not someone with full on sickle cell anemia like myself. However recently my mind has changed and I do see an advantage.
With sickle cell my body is so sensitive that anything that is toxic to me (emotionally, physically, mentally, spiritually) will trigger a signal in my body. This may seem insignificant but that simple outlook has been a major tool in helping me get my life in healthy alignment this past year. All that is toxic either causes pain or keeps me in a low energy anemic state. Knowing that I can use my body's signals to get rid of or correct the things that are causing disfunction in my life .
Keeping A sickle cell journal
With the outlook of using sickle cell as an opportunity, I began a journal where keep track of moods, diet, physical activity, and other factors during the days I'm in pain. I'm happy to share my process with you.
It starts with recording what you were eating, drinking, what you were experiencing physically and emotionally the day of and days prior to when you started experiencing pain. You might notice the first time that your pain was triggered by something you ate, while that is good it's not all that this habit is about, this is for seeing patterns.
For example noticing that for the past three times you were in crisis you were feeling intense guilt or shame and your heart beat was irregular. That's a pattern and once you've found one you explore the connections, ask your doctor about your heart beat, ask why is shame causing me to be in crisis, do some research, ask why am I feeling shame in the first place, and start making steps to correct the cause.
Information I'm recording in my journal.
Water consumption, diet, physical activity, where the pain was and where it began are the basic starting points. I assess inflammation and heart rate because those are specifics to my prior history that I want to track. You can customize your own program and record what's more necessary for you to assess, ex. breathing, weather, etc.
Feel free to download this image.
Below are examples from my journal, to the left is what I recorded from the last time I had a crisis and on the right it's a page from the daily journal I keep to track my diet. It helps if you track your diet and if you keep other kinds of journals so that when you're assessing a crisis you can return to your records and look at multiple consecutive days instead of what you can remember from today or yesterday.
Choosing to practice a relationship like this with my condition helps me to not simply experience sickle cell as something thats happening to me but as something I can use, something I can manage, and also something that informs other areas of my life. This is also great information to present to my doctor so they know more about what's specifically going on with me and can better assist me.