I’m not mad today. That feels better. I’m not sure I could carry mad with how much excitement I feel about Hawaii.
More on food stuff: I find it funny that I get more comments about poop than anything else.
I don’t think a single solitary person has ever tried to hurt me with food. I do not believe that in following their preferences/needs/restrictions a single person has had malice in my direction. I hope I didn’t actually make it sound like I thought people were cackling with glee as they deliberately inflict diarrhea on me. That’s not it.
I suspect that part of my feelings of rage is how helpless I feel to fix this problem. I have tried. I’ve tried lots of things over many years and things are a lot better than they used to be but they still aren’t great.
I suspect that part of my feelings of rage is how much I consciously try to accommodate other people and I don’t feel like other people do the same to me. (I ask people over and over about food restrictions/allergies/etc. Things change.) It is important to note that people DO ask me if I have any allergies and I tell them no. So people are trying. I don’t know what to tell them to make the question useful and that is really hard for me. It is NOT someone else’s fault I don’t know what to tell them. It isn’t anyone else’s fault that people ask if I have allergies and I say no. No one is to blame. I’m not mad AT anyone.
I think that part of me feels like… maybe other people had help figuring out what was broken in their body and I don’t have help and I don’t know how to figure it out. I know that isn’t accurate. I know that I perceive other people as getting more help and love than they actually do. I know this is jealousy talking as much as anything else. I’m jealous of having people who take care of you who help you figure out what is going on with you.
I want a mommy who will handle the food diary and elimination diet and tell me what I can and can’t have. I would meekly go along. But doing it for myself is so hard. I know it is way harder than it should be.
In order to do an elimination diet I will have to cut back on what we do. We will have to stay home basically every day because I depend a lot on eating out to bridge the gap between my spoons and our requirements for food. If I’m doing an elimination diet I can’t eat out.
And I have a lot of food issues. So many issues. If I eat the same thing day after day I feel rage and I feel violent and I feel like I deeply need to go do physical damage to other people to punish them for having this horrible taste in my mouth. Eating repetitively is really hard for me. I feel like a petty bitch, but I have finally managed to figure this out enough to work around it and not make other people miserable.
But if I want to figure out what is making me sick I have to drop my coping methods.
I feel like my whole life right now is “All of your coping methods are shit. Stop it. Do something else.” With no ramp up, no support, no idea of what else to do other than things that are super hard and require education, time, and support I don’t have.
If I live on white rice and plain meat for weeks I am not going to be a very nice person. It’s just a fact. And I won’t be able to go out much and I won’t be able to do many projects because I will have zero patience and I will lose my temper and scream at the slightest provocation. I will spend a lot of time thinking that cutting myself is way the fuck more interesting as a means of controlling my behavior than punishing myself with terrible food for months.
Ok, it is in service of the goal of having my body hurt less. I’ve tried a lot of things in the name of that goal. Not much works out. Instead I get to the end of months of horrible trying to help myself and utterly fail. So I’ve tortured myself for nothing. And then people turn around and say, “Well I guess you just aren’t trying hard enough.”
I would like to die. I would like to stop trying. I can’t try hard enough to get my body to stop hurting and I don’t really want to live like this for more and more and more decades.
I would like to have my asshole not hurt for a whole week straight.
I’m scared. I feel helpless to help myself. I feel like no one else cares. (I’m not saying that is true or accurate or part of reality.) I know it is bullshit that no one else cares. There are lots of people in my life who have offered advice, support, they would make me food within the restrictions that tasted better than stuff I am capable of cooking for myself…
I feel so bad that I can’t see that. I “know” it. But it doesn’t feel real. It feels like a lie. It feels like taking the risk of trying so I can be let down again is so so so so so stupid.
The thing about trying a lot of things and trying really hard to have relationships with lots of people is… it doesn’t always work out. That has to be ok when you are using the shotgun approach to everything. (Do you know the shotgun approach? Shotguns don’t use the same kind of bullet as a hand gun. There are lots of tiny little pieces in a larger cartridge. When you shoot something some parts of the bullet may hit the target and some may miss but you figure it is close enough because it did get hit. But you know going in that lots of your effort is going to fail.)
It’s like how I used to hunt for sexual partners. If you ask enough people… someone will say yes. You just have to learn how to not let the “no’s” bother you.
I am really struggling to over come the failures on trying to eliminate the pain my body feels. Every new try requires more and more and more energy to get over the opening hurdles.
I know that the next step is a food diary and elimination diet. I am not looking forward to this. Just the idea makes me cry and feel helpless and angry.
I sure as shit won’t be going over to dinner at anyone’s house for months. I don’t want to talk about the fucking steps. It will be shitty and horrible and I will hate just about every fucking thing I eat the whole fucking time even if I normally am ok with eating something. Just the fact that it is part of this process will breed so much resentment.
I’m afraid that my hatred and rage for this process will make it less than effective.
OK, when I say I did a food diary…the reality is I was very inconsistent with it. I carry a small spiral bound notepad and a pocket sized calendar with me everywhere I go. I imagine more technically minded people would use their smart phones or something. I use the notepad and calendar for writing down everything from shopping lists to brainstorming on the house repairs to reminders to bring something up in conversation. I only really wrote stuff down about food when I had a particularly bad digestive day or a particularly good one, then on the margins of the notepad or calendar I would scratch my head and think backwards about what I ate for the last day and a half. All I wrote down was stuff like “peppers bad?” “chinese food-oily- bad?”
I think I had a similar approach to an ‘elimination diet’ The idea of cutting out foods one by one without already knowing that they bother me felt like exploratory surgery on my happiness. So what I did instead was be strict when cooking at home- e.g., I hate mayonaise and spinach, so how can I cook this recipe without it? Rather than eliminate foods, I introduced them. ie. start with something that sounds good and add a side of something that sounded dubious. When I go out to eat, I avoid foods I know I am likely to have a bad reaction with, unless I have the next day and a half free to sit on the toilet. A good example there is camarones a la diabla, which I love but tends to give me problems. Other than that I eat whatever I want when going out to eat. I usually can’t afford to go out to eat more than one meal once a week so it has been pretty easy to trace back food problems to a particular meal.
The disadvantage to my approach is that it wouldnt work very well for identifying foods that cause longer term low level inflammation, like for a lot of people that have problems with gluten. Most of my food reactions are pretty obvious and dramatic though, occurring within 20 min to 10 hours.
My problems are too complex for a simple food tracking exercise to help much. I’ve done that more than once with basically no success. I have taken them to doctors and been told “Well you’re eating a healthy diet!” which makes me want to stab people in the eye with an ice pick.
I personally am not willing to do an elimination diet. The idea makes me feel stabby. And I never recommend that as a starting place. I usually go old-fashioned w a dedicated notebook and pencil, small enough for my pocket. When I sit down to eat, I take notes. Before bed, I double check snacks made it in there. If I’m having symptoms, those also go in there, chronologically (so I know what I ate before/after). After a few days to a week, I start looking for patterns. Sometimes they jump out, sometimes it takes longer. Identify something, remove it. Keep a list of your removed items separately. Rinse and repeat. Once you get to a stable place, you add one thing from your list and see what happens. You do the 4-day approach, just like starting solids. If you have no reaction, assume it was a mistake and move on. If you react, keep it on the list.
It is not a quick process. And it’s a but of a pain, but it is far less restrictive than a full elimination diet.
And if at some point you would like to go see my allergist, the one I take the kids to, I’m happy to drive us all up/back and watch the kids while you meet w her. It makes for a long day, but she’s the one who’s gotten me through this part 3x now.
It isn’t as if this is my starting point. You also don’t have the degree of diarrhea I have and I don’t think you ever have. Maybe if my issues were less severe just taking some notes would help. I’ve tried that and found no clear patterns and nothing that helped me.
I need to take everything out and just add in a few things at a time or I’m not going to figure it out. And this is going to be a fucking nightmare. I won’t be able to leave my house.