It’s 8am and I’ve already been awake for 3 hours. I’m sick and unemployed, I should be sleeping ten hours a night. I should be sleeping late and luxuriating in the fact that I no longer have an alarm clock going off, a company to oversee, and bosses to answer to (… and bosses to whom to answer). My brain should be able to shut down and heal. It’s February, for fuck’s sake. Time to hibernate. I’ve been missing exciting life and getting absolutely nothing done for 17+ months now ~ why does my brain feel like it has to be on high alert ALL. THE. TIME?
Throughout the day, I’m a dizzy zombie, unable to accomplish anything, but my mind is weakly turning over like the Little Engine that Could trying to get up that hill: What do I need at the store? What could be causing my forehead rash? What will I eat for dinner? Will I try a sleep drug tonight? And then the night rolls around and that little engine reaches the top of the hill and starts to fly down the other side: HOW DO WE NOT END UP DESTITUTE? HOW CAN I MAKE MONEY? I NEED AN M.E. DOCTOR! WE NEED TO MOVE!
So, it feels like ~ and I think it’s the reality ~ I never deeply sleep and I never truly awaken. I am existing in a netherworld, a slightly off-center plane of existence where everything is blurry and too bright, where everything is too loud, but also muffled under ear-ringing… a place where you try to do something month after month, but, during the day, it’s too much energy and, at night, it’s too… sepulchral.
Case in point: I honestly thought it had been about one month since I wrote my diet post, but I see it has been more than three months. That’s a quarter of a year. Three months from now, I will be 41 and it’ll have been a year since I wrote “birthday present thank you cards” on my to-do list (they’re still on the list). Actually, three months from now it will be exactly 5/19 (in American date writing) and those closest to me know that that number means something (what, exactly, I don’t know. One day I’ll write a post about my weirdness with numbers).
raspberry pop tarts
Today, I woke up starving. It’s now 11:30am and I have already eaten a raspberry “pop tart” (click above image for recipe), some apple, a beef breakfast burger with acorn squash and coconut cream, and a mug of bone broth with sauteed kale, asparagus and parsley.
To continue the saga of how I got to this strange way of eating: When we last discussed food, I had just started a strict low-histamine diet. Before ME, my crazy heath history included idiopathic anaphylaxis, autoimmune urticaria and angioedema, flushing, vasovagal syncope/shock, and a slew of other things that could be caused by histamine intolerance and/or a mast cell disorder, such as medication reactions, dysmenorrhea, osteopenia, headaches, tinnitus etc. I thought if I were very strict with the diet, I’d be able to quickly tell whether or not it would make me feel better. I poured over online histamine lists for weeks. Information is very conflicting because histamine levels fluctuate based on where the food was grown, when it was harvested or slaughtered and how long it has been in storage. Also, if you listened to the interview with Dr. Joneja, you know that histamine is a very important neurotransmitter in your body, but it can build up over a period of time and, if your bucket is overflowing, you will have a reaction. In other words, the salmon with lemon on Monday may not do any harm and neither might the wine and chocolate on Tuesday, but the eggplant on Wednesday might just put you over the edge and you have flushing, a migraine, hives. Or worse, anaphylactic shock. It is a process of trial and error for everyone attempting this diet. You have to figure out what affects your body.
The two best histamine food lists I found were Dr. Joneja’s and this one out of Switzerland, which shows histamine liberators and DAO inhibitors (more on this later) as well as foods that are naturally high in histamines. If you are as insane as I am, you can look at the strictest list possible, which I compiled from the two linked lists as well as about five others. My list is so short because I wanted to know the foods that everyone agrees are probably safe.
I ate strictly low-histamine foods for about month and, let me tell you, it was far more difficult than all the other diet modifications put together. Even a loose attempt at low-histamine is a slice of hell. The dilemma in which I found myself was that I kept adding elimination on top of elimination. So, over the course of 20 months, I had eliminated gluten, tomatoes, eggs, and strawberries; then dairy, legumes, all grains but oats, nightshades, and most processed food; then soy, citrus, pork, red meat, lunch meat, shellfish, condiments, maple syrup, and honey. I added a few things back (rice, red meat, honey), but everything else stayed out. Once you adapt to certain meal staples, it is difficult to change ~ especially when someone else is shopping and cooking for you. And then, on top of these, I went low-histamine. I stopped eating most herbs and spices, spinach, avocados, sweet potato, chard, all vinegar, all fruit except apples and pears, all fermented foods, leftover foods, all fish, chicken… and red meat was out again. It was these last few that set me up for the fall. Having no leftovers in the fridge left me scrambling to find things to eat. I hadn’t figured out how to buy the freshest meat or the process of cooking and freezing to ensure I had meals on hand. I hadn’t figured out how to get enough protein when I wasn’t eating dairy, legumes and most meats. I decided not to give up nuts and seeds, which are avoided on the strictest histamine lists, because they were providing the vast majority of my protein. Still, they weren’t enough and my blood sugar started crashing daily, sometimes multiple times a day, sometimes in the 40s and 50s.
If anyone has experienced severe hypoglycemia, you know how scary it can be. Suddenly I didn’t care about any other symptoms, I just needed my sugar to stablise. Mainly veg does not work for my body. And so my husband became the Fresh Meat Scavenger and I became the Great Meat Eater.
To be continued (sooner than three months from now) with honourable mention to ketogenic, alkaline, low-salicylate, migraine, mold, AIP, and low-sulfur/thiol diets…
Rag and Bone Shop of the Heart 
Reading your blog is so often like watching myself, except with a time delay of a year or two. I made the shortest possible list too, just to be on the safe side. 🙂
Since apparently I’m you from the future, I have to say that I’m sorry this all probably sucks so badly right now, and that you’re probably working so hard just to try to keep everything together, and that you probably keep trying to do whatever it is you need to to to make things better and then feeling frustrated that they don’t really seem to help. I hope that things get a little better for you in the future, like they did for me.
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Thanks for visiting us from the future!
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🙂
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No problem. I’m still not well enough to do much, but it turns out time travel is a surprisingly low-energy activity.
I think I missed out on the part where they gave out the silver jumpsuits, though. I have it on good authority that all people from the future are supposed to have one of these. All I wear are cotton T-shirts and gray lounge pants. …Like the rebel I am.
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Are there yoga pants in the future? Silver yoga jumpsuits? Please say yes.
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I know! I have been trying to heed your advice for the last year, but, maybe we’re destined to walk a similar path. I’m very happy to have you as my guide, though, and I love it when I hear from you and know that the future is not too bad. xoxo
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Jackie – I can’t say that I’ve seen one yet, but that only tells me there is a broad and untapped market.
E.Milo – I think it’s human nature to need to go through it yourself. I don’t think I would have been able to change my own path too much, no matter what other people told me. I had the phase of intensive biochemical research, the phase of trying anything and everything ‘just in case’ (bouncy chairs for POTS, infrared sauna, guided imagery, etc.), the phase of complicated diet restrictions, the phase of numerous mainstream tests, the phase of numerous non-mainstream tests (mitochondrial function profile, hair analysis, food sensitivities, vitamin and mineral levels, salivary hormones, etc.), the phase of seeing every specialist I could, the phase of seeing integrative doctors, the phase of seeing ME specialists, the phase of absurdly large numbers of supplements, the phase of MTHFR protocols…and a pile of others I’m not thinking of right now, I’m sure. It kept feeling like there must be an answer out there for me. There was, I think, to an extent, but I probably could have slimmed the process down a lot.
I feel weird sometimes that I haven’t been able to update my own blog more regularly, because my understanding and viewpoint have shifted and grown so much over the past years. So many of the words there no longer reflect how I feel, you know?
Anyway, I hope that your own journey helps you. Also, if you happen to see stock open up in silver yoga jumpsuits, you may want to get in on that at the ground floor.
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I AM NOW OFFICIALLY ”EXHAUSTED” & I CAN’T BEGIN TO IMAGINE WHAT IT’S LIKE TO BE U. MOSTOF MY LAST 20 YEARS HAS BEEN SO UNPRODUCTIVE & I WAS TOTALLY RENDERED UNABLE TO WORK IN 2002–SO I WAS FORCED TO RETIRE 8 YRS EARLIER THAN MOST DO! I HAVE A BORING LIFE, BUT I DO HAVE A SCHEDULE; I GET UP, CHECK MY COMPUTER, WATCH SOME TV, MOR COMPUTER, MOR TV & I LOOK FORWARD TO HAVING MY QUIET, MORE ”WITH IT TIME” BY 11P,M. WHEN I READ A GOOD BOOK FOR ABOUT 4 HRS & THEN FALL BLISSFULLY ASLEEP FOR ABOUT 6 HRS BEFORE THE ACHES IN MY HIPS & MY BLADDER WAKES ME UP! THEN I ”TRY” TO SLEEP FOR 2-3 MORE HOURS BEFORE I GET UP & GREET THE DAY–USUALLY WITH LITTLE ENTHUSIASM. I PRAY I NEVER GET AS SICK AS YOU, MY DEAR & PRAY THAT ALL THIS WILL PASS–SOON!! LOVE, BJ. THIS IS NOT THE LIFE WE WERE MEANT TO LIVE, THAT IS FOR SURE.
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I’m sorry I’m exhausting you BJ! I know one day I will stop all this searching and seeking and relax, but I feel like time is slipping by and I just want to know I did what I could do (in other words, I can’t travel to an ME/CFS doctor and I can’t trial most drugs, so I’m going to do all the tests and diets and “innocuous” treatments I can).
I love routine and yours sounds peaceful. I’m so happy you have found some contentment, although I do wish you could have worked longer and you could sleep longer and painlessly. Thanks for reading, friend. 🙂
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I feel your pain. I am experiencing a very very similar situation. I am hoping that you will write good things in your next post. And I will say If Elizabeth did it, we can also do it. Your endeavors are very encouraging. God bless you.
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I am so sorry you are experiencing anything similar! But encouraging one another is all we can do. Thank god for the internet.
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OMG mate I’ve no idea how you’re doing it. As you know I don’t have half your willpower and couldn’t stick to a strict low histamine diet for more than 3 weeks due to feeling so weak and ill from lack of calories, carbs and protein I could barely function. Adding all your other restrictions on top……….you deserve a medal for perseverance. I really hope you can find out soon what your biggest food culprits are and are able to reintroduce some of the things you’re currently having to avoid. Wishing you all the luck in the world x
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Thank you, Jak! I actually love your approach towards food. If it doesn’t help, don’t eliminate it. I just wish I could find some sort of baseline in my symptoms so I would be able to tell what is diet-related and what isn’t. Everything I experience can be blamed on ME. Even things like the rash on my forehead, I blame on hormones or dry skin or my face wash… but what if it’s something I’m eating? It’s just so hard to tell.
I think about you tackling all this alone- I know how lucky I am to have my husband to shop and cook. YOU deserve the medal!!
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Honestly? Between trying to eat low histamine, avoid raw goitrogenic foods, avoid foods high in nickel (which I am allergic to), and avoid things I am allergic or sensitive to, I really don’t know what to eat anymore. I was making green smoothies for lunch, but my protein powder might be goitrogenic. I keep bingeing on fruit late at night. How do you tell if your blood sugar is low? A light bulb went off in my brain when you said that–maybe that’s why I am having these binges on apples.
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I feel the same way! I just started a semi-low-sulfur diet and it’s just the final nail in the food-joy coffin.
I’ve chosen to ignore goitrogenic foods because my thyroid is already dead from radiation. Hope that is a wise choice!
I got a blood sugar tester (One Touch Ultra Mini – cheap, but testing strips are expensive, I get them on eBay). It has been invaluable since the onset of ME because I have a tendency to not recognise the hypoglycemic shakes or blame them on tremors from overdoing it. My sugar is generally in the 80s, but I get shakes in the 70s and I’m in trouble below 70. Good luck!
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Thank you for the blood sugar info. I really need to get one of those!
“The final nail in the food-joy coffin.” Well put–hell yeah, I know how you feel. I have been doing low-carb, low-histamine, no sugar/gluten/dairy for a while now, and it is painfully boring but it has helped my urticaria, itchiness, and rosacea flushing/burning enough that I will keep doing it (interestingly, the rosacea trigger foods list is almost the same as the histamine foods list). I do cheat with fish, nuts, and egg whites, but I try to have them once a week or less. Before my current food plan I did the candida protocol, which was a nightmare. My histamine food list is not as strict as your strictest list (I eat cooked chard and Brussels sprouts). I couldn’t open your first two food-list links, but I think the Joneja one might be the same as mine, which is from the International Chronic Urticaria Society. Basically, the only fruits I eat are apples, pears, Asian pears, and blueberries (I know they are not low-histamine, but they don’t bug me like other berries). The raw goitrogenic foods I have to stay away from (although I cheat by having pears), because my TSH has been high lately.
Anyway, the upshot is, when I look at some of your recipes, I actually drool! You really did a fantastic job making the best of all these dietary restrictions. Maybe you will be the next low-histamine chef?
My boyfriend is OK with my food because we only eat dinner together. At breakfast and lunch he eats normal food, LOL.
I haven’t blogged about my food yet because my blog has only been up since December, and it will be such a giant post. I already have been driven crazy by conflicting lists of goitrogenic foods online. Maybe I will start with that.
Good luck to you too! We will get better … somehow….this won’t be the rest of our lives … can’t be …
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My gosh, this universe of ours can be a cruel place. I recently read something on Facebook (at least I think I did, sometimes I make up news headlines, my mind reads one word and my imagination makes up the rest…) where astronomers are now wondering if our universe was made from a black hole… might explain everything illness related??? I wish you restful nights. I hate those crazy train rides of nights and hope the universe will calm. Thinking of you as always. xx
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Yes the black hole and the unexplained!
http://www.universetoday.com/104863/goodbye-big-bang-hello-hyper-black-hole-a-new-theory-on-universes-creation/
“For all physicists know, dragons could have come flying out of the singularity,”
I love that! Dragons that sit on our chests and bind our limbs and breathe fire into our brains! Or maybe there are billions of teeny black holes collapsing on themselves inside our bodies and that’s the problem!
Oh, I was awake at 5 am again after 4.5 hours of sleep, maybe I’m half mad. 🙂
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Hahaha I love the Dragon quote… as for the sleep, I hope your body lets you get a lot more. And mad?? No way! Unique 🙂 xx
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Hahaha, yes, obviously the dragons are to blame. Maybe there is an anti-dragon supplement we can take? SuperDragonProtekt or something like that (defeats effects of dragons on the immune system, now only $99.99!) The teeny black holes could be a bit more challenging, I fear. 🙂
I stay up until 5 a lot also … 😦
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Might it be easier to run a true elimination diet and then work out whether what you react to is due to intolerance, allergy or histamines? (I know nothing of histamines although my foggy brain keeps saying ‘wasp stings’). I hope your perseverance pays off. 🙂
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I think I did a true elimination diet? At least that’s what my doctor called it. But, honestly, I sometimes wonder if I have symptoms from ANY food or if this is just the disease. We’ll see if it pays off…!
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Your description of living in a netherworld where you are never truly awake or asleep sounds so familiar. It describes so well the state I’ve been in for the past eleven years. The write thank-yous for birthday gifts on your to-do list for so many months sounds like me too. I move items from day to day, week to week, never getting the simplest of things done.
But there our similarities stop. I am in awe of the radical change you’ve made to your diet! I can’t even imagine. The first time my blood sugar dropped I’d end up in the pantry scarfing everything I could get my hands on. You are very strong to stick with this! I hope you can figure out which things cause reactions soon so you can settle into something of a normal eating routine because having such a short list of things to eat must be hell. And I thought giving up gluten, corn, dairy and cane sugar was bad!
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I’m sorry you’re sleeping awake, too! I want the razor-sharp mind back!
Thank you so much for saying I’m strong, I feel like I sabotage at every turn (last night eating Cinnamon Chex, Taro Chips and Theo chocolate bar for dinner), but I keep trying.
Corn was hard to give up for me! To my amazement, I miss popcorn more than cheese and bread. 🙂
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I remember there was a thread about histamine intolerance on the rosacea forum a while back … It is a very long thread. At the end there is a user called pineapple girl who is actually the Low-Histamine Chef. http://www.rosaceagroup.org/The_Rosacea_Forum/showthread.php?19469-It-was-Histamine-Intolerance-All-Along/page12. I don’t think there is anything there you don’t already know if you have watched that interview with Dr. Joneja (I am reading the transcript now–I couldn’t focus on the interview but the transcript was on so it was easier), but I thought maybe it would help to know you are not alone. That always helps me anyway. Most people there don’t have M.E., but you did mention flushing and rashes and they all have that.
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Thank you for the link! I will take a look. It does help to know I’m not alone. When I first discovered other people who had experienced anaphylaxis and had no answers to why, I was ecstatic! But then I saw that some of these people are going into shock regularly and it made me realise that my problem could be so much worse.
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Also, thank you for letting me know about those links! ~ I have updated them and they should work now. Can’t wait to read about your food trials and tribulations when you get around to that blog post!
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Changing the way we eat takes up so much energy! Don’t beat yourself up because it is HARD! Good luck, and I hope you fine-tune something that works for you!
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Thank you for cheering me on! I’m just thinking about a few years from now when I’ll not have to think about this anymore (please god).
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So what DID u eat?
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[…] I’m so happy now, my skin looks so good, I haven’t had to check my blood pressure or blood sugar in months because I feel stable. I don’t know what has brought about the difference, but […]
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Have u tried:
Chromium to assist glucose into cells to address hypoglycemia? Chromium levels can be assessed via hair analysis. If u r chromium deficient your bloods may show high cholesterol, high triglycerides, altered blood glucose levels, low HDL
23andme genetic testing? If u have mutations on certain genes their action via enzymes can b assisted with cofactors ie vitamins and minerals
Digestive enzymes??
Just a few suggestions
Regards
Steph
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Thanks for the comment, Steph. I tried chromium years ago, but not since I’ve been sick. I do have high cholesterol, but high HDL. I’ve done 23andMe and I do take enzymes. Thanks so much for the suggestions!
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Are you still on this diet? I am on the same restricted diet and I have nothing left that I can eat.
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God, no, Jackie. I’m gluten-free and very loosely low-histamine, but other than that I try to eat everything. Restrictions caused WAY me problems than they helped, so I try to do everything in my power to eat a diet as varied as possible. Good luck! My advice is be very wary of strict eliminations.
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