2015 was an interesting year for me. I was more physically active in 2015 than in any of the previous 12 years of my Chronic Fatigue Syndrome (CFS) Illness. I was surprised and happy at this turn of events. I did some hikes, including one in the Grand Canyon which is pictured to the left. I’ve been attending yoga classes and Just Weight classes at my local athletic club regularly and spending more time on the aerobic machines there. My brain has been clearer and I am feeling more “normal.” I am so very grateful for these improvements, and I sure hope they continue!
But 2015 had it’s down times too. We believe my CFS is infection associated and twice (July 5th and December 31st) the virus that plagues me reactivated and I went from feeling pretty darn good (for me) to not being able to function. This means I can’t leave the house and even walking is difficult because I feel so disconnected from my body. It is so very awful to go through that!!! Then, 9 days later, I’m back at the athletic club feeling much better. So weird!!
Here are some of the things I learned in 2015:
I learned I am actually allergic to wheat and oats. See my post on Wheat, Oral Petechiae and Me.
I learned if I eat too much fish, even fish low in mercury, my mercury levels will go above the lab’s reference range. See Fish, Histamine and Mercury.
I learned foods high in histamine are problematic for me. See My Histamine Food Challenge.
I learned that no doctor or dentist that I have yet consulted knows why I get petechiae and purpura in my mouth. (See above post on Wheat, Oral Petechiae and Me if interested.) We were able to biopsy two of them this past week and they are off to an oral pathologist for examination. I now suspect, after what I’ve been observing the last several months, that they are an allergic reaction (or intolerance) to foods I eat. More on that in 2016 as it becomes clear (if it becomes clear)!
I learned that reintroducing foods is hard because there are way too many foods that don’t work. I get either headaches, joint pain, itchiness, sleepless nights, restless legs, brain fog, oral petechiae or all of those symptoms.
I learned I won’t die if I eat foods that I’m allergic to (so far no anaphylaxis….and I’m so sorry if you deal with that), but I will get the above symptoms which make life difficult.
I learned that restaurants can’t cook food “plain” when you ask them to.
I’ve learned that most probiotics don’t work for me (they give me histamine issues), that my doctors don’t recommend them in my situation, and that while I can’t tolerate a whole cup of yogurt, I can tolerate a small amount (1/2 ounce to 1 ounce a day) and that amount seems to be helpful for my GI tract (and my doctors are OK with that).
I learned that calcium supplements (even calcium citrate in a small dose) is constipating. I also learned that when I stopped taking the calcium and the small amount of magnesium I was taking that my leg and foot cramps went away.
I learned that my Vitamin B6 levels are high even without taking supplements; so I am advised to not take any supplements with that vitamin in it.
I learned that so called “healthy fats” such as fish, olive oil and macadamia nuts will send my lipid levels to their highest level ever, causing my cardiologist to look very sternly at me. (Yes, those were the only high fat foods I was eating.) I learned that when I cut way back on those foods my levels dropped nicely. (My weight dropped too which isn’t such a good thing because I’m underweight.)
I learned that I use my Instant Pot a bazillion times a week and if it ever dies I will immediately buy two to replace it.
I learned that I can eat sweet potatoes, yams, winter squash, legumes and vegetables every day and be OK with it. (sort of)
You might ask what I am eating…..well, I am eating sweet potatoes, yams, purple sweet potatoes, winter squashes, several different kinds of legumes, fish (rarely), apples, pomegranate juice, and lots of low histamine vegetables (Swiss chard, collard greens, kale, beet greens, beets, broccoli, cauliflower, asparagus, green beans, summer squash, onion, garlic, lettuce, red cabbage, and Brussels Sprouts). Also some olive oil (for calories) and sea salt. Yes, this is limited but when I use the Cron-O-Meter, I am doing okay nutrient wise. And if eating this way is what makes me feel as strong as I did today at the athletic club (even with a slight cold) the trade-off is so worth it!
I learned that I don’t like having infection associated Chronic Fatigue Syndrome. I also don’t like having food allergies / intolerances. I don’t like having weird health issues that no one knows anything about. But, I am grateful for a God that encourages me when I need it, and I am so very grateful for the doctors who are standing with me trying to figure things out.
I am sure there are many other things that I learned but have failed to mention here. But if they are worth knowing about I will do my best to write about them later. I am determined to press on and try to feel the best I can feel given the circumstances I have. And I will post here from time to time just in case what I am going through might help someone else.
My goals for 2016 include trying to figure out why I’m getting the oral petechiae, what foods I can safely eat besides what I’m currently eating (do I have a benzoate sensitivity? an extreme sensitivity to corn and it’s derivatives?, how much olive oil can I eat before my lipids go up again? Actually, I want to replace the olive oil with whole foods but until I am able to do that I need calories from somewhere!!)
Of course, if I win the lottery I will put funds towards solving CFS! That would be an awesome achievement for 2016!
Here’s to a happy and healthy 2016, for all of us!