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.
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.
I’m running late and it’s only 8.30am so this is just a quickie (which has gotten longer than I anticipated ;-). Firstly……..huuuuuggggs. Don’t give up.
Seconly, here’s me posting on FB about not having access to all the tests you do in the States and now I’m actually glad. I’m glad I don’t know all the stuff you do about your body, cos then I’d feel I had to do something about it. Ignorance is bliss
Thirdly, I’ve done nothing about what’s wrong with my body and made huge improvements anyway. I really did do NOTHING. And I’m just as well as all the people I read about on forums who did everything – in fact I’m better than many. Have a break from it EM. For a month. Two. Don’t read about it. Don’t go to appointments. You’re not going to die in the meantime and your mental health will probably enjoy the break. Spend time with the furry kids. Lie in the sunshine on your beautiful patio and just chill. And eat sugar, fuck it your life is hard enough. I eat chocolate every day and don’t give a crap about its histamine content.
I read about all the people who are better from physiotherapy or methylation and I know I can’t do it, cos I’ve got more wrong with me than they have! Ad I also know there is no cure for what I have.
Lecture over 😉 Your are not a failure for not getting better. More hugs. Jak xxx
If you can handle a bit of advice, I want to say this to you: please don’t be so hard on yourself. None of this is easy and you can only do what you are able too do. My other advice is to put some joy–fun, even–back into your life. I’ve been sick with M.E. for 30 years now, and I feel like giving up completely, which is how I read your post here, at least once a week. What helps me and might also help you, is to treat yourself the way you would treat your best friend if she were in your position. Would you be critical of her because she ate some ice cream or wasn’t able to follow all the details of a protocol? I don’t think you would. I think you would feel compassion for her because you know how very hard this path is. So comfort yourself, just the way you would comfort your friend. And let her (you) rest. Stop the research and the searching and the quest for a while and take a vacation from the worry and the work–just let it go. If there is something you enjoy, even if it is just looking out a window and enjoying the view, then do it! Let some joy in, and focus on it. Treasure it. If the time comes when you choose to go back to the quest, then do it, but only if you choose to. I wish you rest and renewal and love and joy in your life. And I wish health for all of us.
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So so, so, so sorry to hear of the tests. I know your struggle is greater than mine but seeing as I’m currently attached to a halter monitor – have been for the past 24 hours almost – because my blood pressure is on the rise… yes to the lovely nurse who said “but you’re not overweight” and to the girl who attached the monitor and adjusted the strap all the way in while asking my age… yes, yes, yes to the meditation and the careful diet… very little sugar… to the pacing and gentle stretches at night… yes, yes, yes…. illness is a puddle of shit.
I hope your puddle shrinks a bit, I hope your fight continues and I hope you stay the strong woman I’ve learnt to know. xx
There are so many people that love you and are silently holding you from afar. ♡
Yep. I have been right there. That crash I had in 2014 knocked me off the Internet, as you know, and no longer being exposed to forums and other people doing better than I was was good for my mental health. I feel like I have had to tell myself over and over that there is no magic bullet that I can find by reading the Internet. I’m just going to be sick for the rest of my life, no matter what I do in terms of what is available for treatment now. On the other hand, being a Cheney patient is helpful in this regard – he is way smarter and more scientific about evaluating treatments than I am, and I am satisfied to follow what he recommends and see if it works for me. We have a small email group of his patients, and that is much better than a general forum for me, because we are all following about the same protocol and there is not the sense of being pulled in 12 directions at once and wondering which is the “right” one.
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Hang in there. You just haven’t found the answer…yet. Something will change, and you will start to feel a bit better. I’m going to send you some art I did a few weeks ago. You’re not alone.
Maybe ‘progress’ isn’t body changes.
Maybe cliff faces aren’t the time or place for research.
Have you ever heard of Dr. Ray Peat? He’s a biologist, (i think he’s 80 yrs old) specializing in endocrinology and nutrition, he really is knowledgeable on most topics. Lots of people with mystery and lifelong issues have turned things around inspired by his teachings. After having tried all kinds of restrictive diets and taxing therapies which oftentimes make things worse or don’t plain work. He has a website with like 100 free articles, and there’s a forum called raypeatforum.com with thousands of people discussing and applying his work. I’ve been one of those people with very chronic and extreme health situation helped by him. And he’s all for sugars (esp. in the form of fruits) being therapeutic, with big scientific reasons for that. I am now convinced the antisugar/carbs campaign is very misleading, and the forum has hundreds members who come in VERY bad shape from their previous low carb wagons, with trashed metabolism and poor health; perhaps you’re craving so many sugary things because your cells really need it. Thyroid functions through sugar! Ample glucose is needed in order to convert inactive T4 to active T3! The liver bases most of its detoxing on good thyroid function and sugar (glucoronic acid), that is: no sugar=no detox! Just wanted to say you’re not alone and there’s hope! Many hugs to you.