I can’t even.

I’m in a bad headspace. Feeling overwhelmed and hopeless, like I just need to give up. I know what sparked it. I got a bunch of blood tests done — things I haven’t had tested in 1 to 3 years — and they’re all still a mess. I’m still a mess. I haven’t made any headway in years. I just feel defeated. There are so many things my body is fighting and either I’m not helping or nothing I do helps. But mainly I feel useless and inept because I can’t manage to research something thoroughly, plan an attack and implement it. I can’t commit to anything because I have no faith that anything will work. So many pills. So much money. So much effort. So much information to process. So many competing theories. So much time scrambling in one place, getting nowhere. I do nothing but read how to help myself — hours everyday for years — and I just wind up feeling like I’m drowning more and more because there is too much.

I can’t seem to manage a methylation protocol, or a detox protocol, or brain retraining like everyone else can. Or a liver cleanse or lymph drainage or help my leaky gut or what about parasites? I can’t seem to manage any diet changes: watch out for histamine, salicylates, oxalates, sulphur, tyramine, too much/too little protein, too much/too little fiber, too many carbs, not the right kinds of fat, dairy, sugar, mycotoxins, pesticides, chlorine/lead/chloramine in water, your tupperware is plastic, your pots and pans are killing you… it never bloody ends! And why does everyone do so well with physical therapy, acupuncture, myofacial release, Bowenwork, craniosacral, reiki, feckin Feldenkrais and nothing seems to work for me? I’m thinking about NAET and muscle testing, frequency machines, homeopathy and EMF sensitivity because what if?? But I know they’re all just black holes. Everyone has a magic pill or a serious warning: Don’t sleep on foam! Don’t go in a hot tub! Your milk must be raw! Your dogs are killing you! Don’t stretch if you have EDS, don’t spend too much time lying down if you have dysautonomia, enemas are wiping out your good bacteria, you probably have Lyme–go on antibiotics, the longer you wait, the worse it is! You definitely have mold because you live in Seattle–leave your house and possessions behind and get clear! I’m so over all of it. There’s no point in giving me advice to just tackle one thing at a time because I can’t. It doesn’t work that way. Time is slipping by; I’m getting older just sitting in one spot. Everything is connected and as soon as I decide to do one thing, I read how that can tip another thing out of balance and I freeze… and wind up doing nothing. My brain does not work like it used to. This is most frustrating of all.

Imagine you’re suspended halfway up a cliff face, trying to get to the top. You’ve spent months researching the best path to take and you have some energy, you’re ready. As you start to climb, people abseil past you, screaming, “Don’t go that way! There are perils up ahead!”
Then others beside you say, “Nah, this is definitely the best way, they don’t know what they’re talking about.”
Then other people all around start chiming in and you listen–while clinging on to the crumbling rock for dear life–because so many have made this climb before you: “If you want to get to the top, go left.” So, you start researching that path.
“No, go right.” Better check out that option.
“It doesn’t matter which way you go if you don’t eat this meal first.” Oh shit, glad I didn’t start climbing yet.
“No, doesn’t matter what you eat or where you climb, you’re fucked if you’re not wearing the right gear.” Energy is draining out of you and the fear is creeping in.
“Don’t be silly, you just need to spend all day every day telling yourself you can get to the top and you will.”
“Nope, actually this mountain is insurmountable when you’re as weak as you are. Just hold on as long as you can and hope that you get stronger before your grip gives out.”
And… I literally can’t even.

Screenshot_2016-03-22-23-30-02-1-1

Anyway, I pretty much want to burn every book I own, cancel all my appointments, throw out all the supplements and extricate myself from every group and forum, go to bed and give up… and, if I’m truthful, it’s all sugar’s fault. I have a grade A, deep-seated, fully-in-denial addiction and my candida blood test came back twice as high as the high result from a year ago that I ignored. Or at least candida IgM did and that’s the antibody that shows active/acute infection, right? I don’t want to go on another elimination diet. I don’t want to deal with something that will apparently keep rearing its fungal head forevermore every time I eat some ice cream. I don’t want to take prescriptions for months and deal with die-off and herxing for weeks. I just don’t. Even my husband is clanging a warning bell about candida, gently encouraging me to just try to quit eating sugar temporarily and I’m like a petulant child. I hardly eat any compared to the old days! I’ve given up so much! And then I ate a bag of kettle corn while pouting. This is waaaaaaayyy harder than booze and cigarettes. Way harder than gluten, dairy, nuts or anything I’ve tried before.

So there’s that. And then there’s these:
Cholesterol and LDL are higher than they were 8 months ago.
CMV IgG, which has been negative 4 times in the past, is now high out of range.
HHV6 IgG is still high out of range.
Mycoplasma Pneumoniae IgG is higher than it was (out of range).
EBV IgG is much higher than it was (out of range).
Sex Horm Binding Glob and Estradiol are high, whatever that means.
Total IgA and one IgG subclass are low.
VItamin D and Vitamin B12 are both low.

I’ll be talking to my doctor about all this in a fortnight, stay tuned.

Advertisements

Thanksgiving Tsunami

The last 10 days have been a bit harrowing. Different symptoms crashing down like waves each day. First let me tell you about our early Thanksgiving dinner with just the two of us.

Everything was made from scratch with the freshest ingredients. The only thing we didn’t do is grind the almond flour ourselves. Here’s what we had:

The turkey was pastured, free-range, organic, fresh (not frozen) from Rain Shadow Meats, our specialty butcher here in Seattle. They had 400 turkeys in a truck parked outside their shop and my husband tells me it was a chaotic scene picking it up. The smallest bird they had was 12 pounds and we didn’t want to store it, waiting for Thursday because of histamines, so we put it in the oven as soon as my husband got home. He roasted it upside down, so it’s a funny looking photo (and these aren’t the greatest photos becasue it was dark in our house):

IMG_20141123_200938

I eat roasted root veg and mashed sweet potatoes and Brussels sprouts and other green veg all the time, so I decided, for a treat, to have a “stuffing” and cranberry sauce to go with my turkey, while my husband made himself potatoes and corn. The stuffing was based on Mickey Trescott’s recipe, but I left out the mushrooms and cranberries. I added fresh rosemary, parsley and a few cut up dried cherries for a zing every few mouthfuls. I also made a paleo “cornbred” (no corn in it, but it has that grainy quality from the almond flour) and added cubes to the stuffing becasue — stuffing without bread in it? Really?

IMG_20141123_184637

The bread itself was delicious and I had a piece slathered in butter, while my husband got to eat those soft, squishy pull-apart rolls that I love so much.

IMG_20141123_190710

I also made cranberry sauce from fresh, organic cranberries, fresh ginger, apple juice, orange juice and a touch of honey. I have never made cranberry sauce before and had no idea how easy it was. Why would anyone buy it in a tin?

IMG_20141123_184912 The gravy was made from chicken bone broth, herbs and onions. You blend it with a hand blender and the onions thicken it.

IMG_20141123_201323

All in all, it was a lovely meal and would have been even lovlier if we had been surrounded by friends and family and laughter and chatting.

IMG_20141123_225033-1

Then the tsunami hit.

12 hours after I wrote my last happy, chatty post, I awoke from sleep at 3am, the sickest I have ever been in my life. I know there’s a lot of “sickest I have ever been”s in my world, but this truly was. Not once, in 3 years of ME, when all my worst symptoms happen at night, have I woken my husband to help me. Well, Sunday night, I had no choice. I crawled on my hands and knees to the toilet, shaking violently and drenched in cold sweat. Cold sweats are diffferent than the night sweats I experience. They are what happens right before I collapse with vasovagal syncope. So, it scared me. I thought I was going to lose consciousness at any moment and I was so parched I needed water asap. I crawled back to the bedroom and got my phone and woke my husband sleeping downstairs. He got me water, salt, my blood sugar tester, my blood pressure monitor, thermometer, charcoal and Benadryl. I didn’t know what was happening, honestly. How could this be a reaction to the healthist and freshest Thanksgiving dinner I’d ever had? What has happened to my body that I now react to anything random?

All my vitals were low, but not low enough to be causing the sickness. Once again, I felt poisoned, only this time I hadn’t taken Cromolyn or any other new drug or supplement. My gut told me it was the onion gravy. It was a lot of onions and I know I have digestive issues with raw onions. It could have been a reaction to the onions themselves or it could have been a form of sulfur poisoning. The meal was very sulfur-heavy and I know my CBS mutation* causes problems because it’s shown up in my ammonia, taurine and homocysteine blood tests.

Yes, when it comes to histamine, it could have been the small amount of orange juice in the cranberry sauce or the few dried cherries or, if you belive my nutritionist, the caulifower in the stuffing, but I don’t think so. I eat dried fruit every day and I’ve eaten an orange without problems. Besides, it didn’t feel like one of my histamine reactions. It was much, much worse. If it wasn’t onion/sulphur poisoning, I would say it was the almond flour. I have reintroduced almond butter, but not almonds themselves or almond flour.

I never got back to sleep that night and rested carefully the whole of Monday. After saying in my last post that no matter how I’m feeling I make it to see my physical therapist, I had my husband call and cancel our appointment that day. I ate like a shaky, poisonened sick person, trying to choose foods that would have the least impact on my body in every way,  but this started the next symptom wave: blood sugar issues. I had rice, carrots, cucumber and sweet potato for breakfast. My blood sugar was 70 before I ate and 170 an hour after I ate. I had a chicken salad, parsnips, butternut squash drenched in butter, but stayed away from the chips and chocloate and broth I eat every day.

Tuesday, I was 2 pounds lighter — after one day of not eating the high-caloric crap I snack on to maintain my weight. And my blood sugar continued to crash. After years of hypoglycemia, I can usually feel the shakes when my sugar drops into the 70s, but it dropped into the low 60s a few times before I caught it. I increased my protein and starchy veg, I added olive oil, plantain crackers, fresh herbs and lots of pomegranate. I even had to go downstairs to the kitchen at 1am, after I had brushed, flossed and had my mouth guard in to cook up a beef burger and sweet potato. Exhausting.

Wednesday, I felt more stable, but very ME-ish: a bad headache and my spine and muscles felt infected and swollen.

Thursday (Thanksgiving) brought on the next new symptom wave: my blood pressure kept tanking alarmingly. No matter how much salt I ate or electrolytes I drank, with legs up and compression stockings on, it would not come up and stabilise. The best I achieved was 83/55.

IMG_20141127_161559wpid-img_20141205_003425.jpgwpid-img_20141128_231541.jpg

My Riley always knows when his Mama isn't feeling well. <3

My Riley always knows when his Mama isn’t feeling well. ❤

This continued on into Friday and, then, towards the end of that night, my whole body was in pain – joints and muscles – which I haven’t experienced in quite a while. My back and my hands felt arthritic.

Saturday, my blood pressure was better, but then came the sore throat and hoarse voice, making it difficult to talk. That night, I awoke 3 hours after going to bed with night sweats and never went back to sleep.

Sunday came a wave of neurological symptoms: poor cognitive abilities, worsening tinnitus, slurring my words, weak muscles, droopy eyes, my numb “buzzy head” symptoms (which signal I need to basically ctrl+alt+delete my brain immeadiately) and a cracking headache.

Monday, my throat and head pain had ebbed, but now it was my heart’s turn. It was hammering all day and fit to burst whenever I moved.

These last few days have been menstrual hell, which is generally an increase in my typical ME symptoms. I would honestly take all the other (probably more dangerous) reactions over the ME-inflamed, painful, exhausted days that feel like someone has pumped every muscle full of poisonous led…  These are symptoms I can’t fight through. There is no remedy, no relief. They make me feel like I cannot go on living if they are prolonged and they affect my mood horribly. I can’t see the light at the end of the tunnel, and I get scared and weepy.

But, the good news is, today I’m stiff and crampy, but better, although the insomnia and nightmares have continued all week and I’m in desperate need of a decent sleep. I’ve been eating a very low-sulfur and low-histamine diet since the sickness that kicked this all off and am completely fed up with squash, lettuce, sweet potato and parsnip. My kindom for some kale! Never thought I’d say that. I tested the turkey, turkey bone broth and orange with no reactions. I tried the almond flour bread, but it was inconclusive (this time of the month caused confounding variables), so I might try again next week. I ate a lot of almond butter with no problem and, today, I had cauliflower (my first sulfurous veg in 10 days) with no problem. I still have to try the stuffing and cranberry sauce, but continue to suspect the onion gravy. Such detective work!

The even better news is, we managed to get out to the cemetery for half an hour to watch our pups run in the thin dusting of snow (yes, SNOW!) and, for that, I am truly grateful.

wpid-img_20141202_165426.jpg

Onwards and upwards. I hope things will ease up until after Christmas.

wpid-1202141500a.jpg

*”Increased CBS enzyme activity would act to convert homocysteine more efficiently to cysteine, thereby lowering homocysteine levels. Ultimately individuals with the CBS C699T upregulation of the CBS enzyme can generate more sulfur breakdown products with potential sulfur toxicity issues, enhanced ammonia production, and a lack of glutathione.” ~ Dr. Amy Yasko’s book, “Genetic Bypass”