Tag Archives: sick

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DIETS Part II: compounded eliminations and low-histamine hell. I mean help. :)

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

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…

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Rag and Bone Blog Anniversary

I started this blog one year ago today. I never thought it would become a permanent part of my routine and something that gives me such pleasure. I started it as a daily tracker of treatment with low-dose naltrexone. The original url was ldndiary.com.

Since then, I have sacrificed most correspondence and contact (emails, cards, phone calls) and used my limited energy to write blog posts so that friends and family will all have a place to go to see how I’m doing. Of course, relationships are a two-way road and my hope is that my loved ones will continue to contact me. I will answer or pick up the phone when I can. If I can be an ear for someone or a shoulder to cry on, it makes me feel like my old self again ~ a reciprocal, functional friend.

This is a very tough line to walk for everyone involved. I’ve had friends tell me they thought I just wanted to be left alone. I am a very private person in some ways. I will lay bare my feelings, my opinions and my thoughts, always ~ I can’t be shocked or grossed out, I am rarely offended ~ but, I’m oddly private about sickness because I don’t want to accept that this happened to me. I want to believe that I am healthy and vibrant. I left my job and only told my bosses why. And I even told them half-truths. Everyone I had worked with for over 8 years didn’t really know what had happened. Eventually, I sent a select few individuals a link to my blog and said, “I’m not purposely out of contact. This is what is going on.” So, I understand completely why people didn’t contact me ~ they didn’t know and, if they did, they were trying to respect my privacy and hermit-ism.

Recently, a friend on Facebook commented on what a good book Unbroken is and I took the opportunity to comment that the author Laura Hillenbrand‘s story is as incredible as Louis Zamperini’s. I also mentioned that I was dealing with the same illness. I’ve been sick for almost 2 years and that was the first time I had said anything about ME/CFS on Facebook (and it’s not because I have thousands of friends on there ~ I’m selective; I’m only friends with people I know and like).

I don’t know if I’ll ever accept my limitations. I used to think of myself as a workhorse, a rock, an efficient multitasker. I spent my life feeling exuberant, passionate and ambitious. At work, I had huge responsibilities, I was in charge of seven restaurants and, no matter how stressful it was, I felt trusted, knowledgeable and accomplished ~ all traits that help self worth. This illness stripped me bare. Suddenly I felt weak, dependent, unattractive… Suddenly, my dreams for the future were out the window. I worked so hard to get where I was in my career and I had only just got there ~ I’d only just started to feel comfortable in my expertise and financially secure. My support network and any activities that gave me joy vanished… This on top of my new broken body.

I guess, after being sick almost two years, I’m finally coming around to the idea that it’s not a failure, not shameful. We all will grow old and health will fail. Mine just happened a little earlier and a little more abruptly. That’s what I tell myself. And I squash the voice that says No, this is worse than the majority of health problems. What do I know? I haven’t walked in anyone else’s shoes.

I think finding friends in the blogging community and making contact on ME/CFS forums has helped in ways I could have never imagined. I truly care about these people that I’ve never met face to face. I wonder how they are and I worry when they don’t write. They have made me laugh and cry. They comment on my blog and I feel like, I may be housebound, but I’m not alone. I’d never read a blog in my life until this day last year and now I am so incredibly grateful for my little circle of online friends who understand what I am going through and give me strength.

Thank you to my family for visiting, cheering me on and sending care packages to cheer me up. Thank you to the friends who call me, confide in me and tell me all the time that they’re thinking of me. And thank you to my blog family ~ my blamily. 😉 You know who you are. I wouldn’t finally be finding acceptance and hope without your help.

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