stuck in a loop

[asdis]

We're trying. Really, really trying. We're doing our best to care for our physical health and basic needs. We're doing our best to keep a recovery mindset and not be discouraged by things. Every new/old symptom that pops up we just keep moving. Try to cope, or at least try not to dissociate endlessly. But there are never any real breaks. No one knows how to help us.

We're stuck in a loop where taking care of anything results in a flare up of some kind. Doing good with our basic needs? Pain flare. Got our pain to a tolerable level? Anxiety flare. Try to focus on the big issues? All the little issues become a thousand times louder. Find something to eat that we actually want? Eat it so much we stop enjoying it. Doing okay with not thinking too much about foods we want but can't eat? Bombarded by ads for them. Finally starting to understand what hunger feels like? Anything with nutritional value that we can eat makes us not want to eat. Managed to clean organize the house to a reasonable place? It only lasts as long as our body can keep up with doing it daily.

We stopped seeing our dietician and one of our therapists in early december because every session became "I know you're trying. I know it sucks. But you have to be patient. You have to keep trying. Maybe if you buy a million gadgets and overpriced 'allergy-friendly' foods you'll pavlov yourself into doing better. Maybe if you eat this thing you hate enough you'll start to like it. Maybe if you stop worrying about money you'll eat better. I know you're worried about not being able to afford the safe stuff, but have you tried buying it anyway? Maybe, maybe, maybe. You should track your meals, or your macros, or take pictures of what you eat. I know those things are triggering but have you considered doing them? Maybe if you move even when your back/leg gives out you'll get used to it."

We've been in this cycle for so long. No one stops to consider how it feels for us to not only be in it but to be asking for help with it. No one seems to consider the fact that simply being allergic to something doesn't stop us from still enjoying it, and no one seems to consider how much harder trying to recover from disordered eating is while being allergic to over half the food we enjoy. How much harder recovery is when our allergens cut out food groups and entire cuisines. Our main therapist does to an extent, but we don't talk about it much with her because she doesn't treat disordered eating.

We're trying a new dietician. We booked another session with our other therapist. We start pain management soon. We're doing everything we can to keep going and to keep getting better. We just don't know what to do or say at this point. Everyone goes down the same list of ideas/solutions for us. Everyone gets stumped by the way our issues interact with each other. No one seems to have anything new to say or suggest. "I'm trying" is always met with "try harder" but we can't. Whether it's allergies or pain everything that we love is being slowly stripped away. We've been watching it happen for the last 16 years. We've been stuck in this loop for so long. We're still trying. It's just getting harder.

[Blueberry]

We're doing everything we can to keep going and to keep getting better. We just don't know what to do or say at this point. Everyone goes down the same list of ideas/solutions for us. Everyone gets stumped by the way our issues interact with each other. No one seems to have anything new to say or suggest. "I'm trying" is always met with "try harder" but we can't. Whether it's allergies or pain everything that we love is being slowly stripped away. We've been watching it happen for the last 16 years. We've been stuck in this loop for so long. We're still trying. It's just getting harder.

That sounds so hard! I'm sorry. I kind of get it too, because I've been working on my own stuff for ages and some things are getting worse, but otoh I do see and feel progress. If you don't really, then that's got to be really difficult    

I think it's kinda normal in cptsd for issues to all interact with each other. So I'm sorry if none of your medical / therapeutic people understand that.

I don't think I've been told for a long, long time to "try harder", except by my own Inner Critic. But not by professionals, so I'm sorry you've been told that. Usually with cptsd we're trying really hard anyway, so what's the use of suggesting we do even more?

I'm wondering if you would be helped by any of these https://www.cptsd.org/forum/index.php?board=272.0 ? They're free and you can watch as much or as little as you like. Often when I feel stuck, this kind of thing is useful. They give me a tiny bit of hope and maybe some impetus to do a tiny bit of something helpful/constructive for myself. Sometimes a listening includes a 5 minute exercise which I find can settle down my anxiety a little bit. I learned in inpatient trauma-informed therapy that focussing your mind on 'something else' other than rumination or anxiety or stress for just 5 minutes can help.

If none of the above sounds useful, please just ignore it.

[Kizzie]

Asdis, these are just my thoughts of course but I remembered feeling similarly some time back in recovery and thought I'd share about what helped me. I remember I started to see a lot of books and articles about being self-compassionate as I was working really hard on recovering and that sort of grabbed me for some reason. I took what I was reading to heart and for me that meant slowing down and not doing so much, about trying less hard rather than more hard, and of being less perfectionistic and accepting that I am human. So many of us have such a bossy Inner Critic that we don't even think to tell it to shush, to question what it is telling us, and to move toward a more compassionate loving self that the IC blots out.

I don't know if this will resonate with you but I hope some of it does and you can step outside that endless loop. 

[NarcKiddo]

That sounds really tough. Ignore this if it doesn't help, but Kizzie's post touches very much on what I was thinking as I read yours. It sounds like you have been doing so much hard work to get better that maybe you need a rest from that. Maybe taking stock of what is "good enough" and just sticking there for a while could help. It doesn't mean you are settling, it doesn't mean you are saying that something is good enough for ever. But maybe it is good enough for now, while you take a breather and take time to plan the next step. It feels from your post that you are being bombarded by so much that you feel like you are being backed into a corner and being forced to be reactive. Nobody can sustain that - but the corner can be helpful too. The walls have got your back. Maybe you don't need to fight your way out of the corner just yet.

I hope things improve soon.

[Kizzie]

 

 

[dollyvee]

I'm sorry asdis, all that is really tough.

It took me years of trying to get someone to believe me that something was going on and it wasn't all in my head, trying to manage it on my own. Sometimes that's what you have to do and it is in way, like reliving my trauma again ie being in the hospital with my m because I couldn't breathe at age 5, questioning if I really needed to be there because she had to get up and go to work the next morning. Did she stop smoking or consider it when the doctors told her it was a problem for me? Definitely not.

So, I read a lot and tried a ton of different things, trying to get some answers from doctors over the years. What I found that worked for me, was making some changes ie cutting out gluten when I thought my symptoms were related to Hashimoto's Thyroiditis. I cut it out for three weeks and had a reaction (acute joint pain) about 20 minutes after I ate it. That signalled to me that something was up. So, I stuck with it. However, all my symptoms didn't go away, but I could see a very real cause and effect from that. I asked the doctors to genetically test me for celiac and they did, but it was neagative. They had no further answers. The inflammation took a long time to go away and clear from my system, but it did until I moved and was exposed to mold again and then proceeded another round of trying to find out what was going on. I miss eating sourdough bread, but to me, the benefits of not feeling sick that I could distinctly feel, outweighed the foods that I could no longer eat.

I will also say that my symptoms were not just on a physical level, eating gluten also did something to my mood and cognitive function. I would feel like I "hated the world," and would feel quite mentally dark as well as lacking the ability to focus. So, this stuff is tricky because the symptoms aren't always solely physical. I know someone who tried the autoimmune paleo diet after I suggested it to her, and it made an incredible improvement (so much so that she was thinking about selling her car because it was so painful to shift at the end of a working day, to not having that problem), but the diet is/was so difficult, and she was having to meal prep on top of working 14 hour days that she didn't know how to keep up. Of course if you're having issues with oxalates and/or salicytes as well, it can compound the foods that you can't eat. But over time, these little steps help to calm your body down a bit to take the next step.

The other thing I found that helped me was to find online communities of people who had the things I thought I did and learn for them. It helped me find out what are the correct diagnostic tests that doctors should be running, so there wasn't your test results are fine and there's nothing wrong with you, as well as what are the functional levels that actually need to be on a good lab result (functional medicine was what helped me source the problem and it does suck because it costs an absolute fortune, but your insurance may cover it as I think some peoples' do). It was also good to hear stories about what did and didn''t work for people, but there are also dead ends too, and people chasing their own snake oil cures.

You are taking care of yourself in a way that your FOO didn't and that's great  Sending you support to take the next step.

[Chart]

[asdis]

the benefits of not feeling sick that I could distinctly feel, outweighed the foods that I could no longer eat.

If it was just one allergy/intolerance we would feel the same. We did good for a bit at avoiding our allergies and felt a little better, we could notice the difference. It essentially means eating the same five-ten things on repeat indefinitely for us, and that is not sustainable while trying to recover from the ED mindset that food isn't safe and the mindset that food isn't "for" us. Cutting out our allergens blew up our progress in that area once we started actually feeling hungry.

Some of our allergies (like soy) are in absolutely everything and it's not always disclosed, especially in things like chicken/turkey meat. For example, as long as we're careful we can eat chicken, but sometimes we end up with chicken that was soy-fed and then had some form of soy used in it's packaging. The only way around that is a bunch of research and we've been working on it, it's just not a super quick or easy process. Because of PFAS we can't eat or touch raw veggies or fruits. We can't even really eat cooked fruits. We've also stumbled on new allergies while looking for replacement foods and it's cut out even more. It's getting hard to eat because one product being out of stock means we just have less food until it's back. Usually it's a base ingredient or something important to our ability to feed ourself while alone. Our other conditions limit how much we can do in general, our energy is limited and we always have to "choose" what's most important to take care of.

We're just at a point where we need someone to help us tackle this from all the same angles that we have to, and finding someone both willing and capable of that isn't easy. At the very least, we need to find doctors/providers that are willing to work together with each other to help us. We're working on it. It's just taking longer than we can really handle on our own.

[Chart]

Asdis, Dollyvee put it really well, "I'm sorry, all that is really tough." I second that. Sounds like you are working double shifts with the symptoms and research, all on low energy. I understand the low energy. I'm also struggling with foods, but not allergies, just sugar and carbs. But even that is hard to avoid, so I empathize immensely with your allergy limitations.

It takes a long time to see effects on a deep level, but working with the nervous system and parasympathetic stimulation might be an avenue to explore. I have great faith in Indian and Ayurvedic approaches.

Sending care and support
 

[Blueberry]

Asdis, is there any chance you could get hold of pesticide-free fruit and veggies, so either somebody else's homegrown or organic, especially from small farms or small market gardens where you can trust that they are actually organic? I know that's a long shot but thought I'd suggest it. No need to justify yourself if not feasible because I can imagine all sorts of hindrances.

Before I knew I had cptsd I worked on my own ED both inpatient and outpatient. I remember back then I was a little underweight tho I didn't believe that, I was often exhausted, i had a lot of stomach pain and digestive trouble plus on the advice of my doctor at the time I was avoiding this food and that food  and everything was getting worse rather than better... I saw a different doctor who did the 'right' tests the way dollyvee probably means and he really listened and I found out later that in his opinion I couldn't digest anything anymore in a figurative way. In my first inpatient stay in the ED group that's the kind of thing they said too, or rather they'd ask certain patients: What else can't you digest? Who else/What else are you allergic to? I had a nut allergy when I was admitted and based on various of my emotional reactions I'd say now that there was a lot of fear behind the allergy. In fact towards the end of that super-long inpatient stay, I tried out nuts and I had no reaction. In the intervening years whether or not I have a real reaction to nuts that I mistakenly consume depends on how emotionally stable I am. I never reacted again with the intensity of the pre-inpatient stay, and even if I had a minor itch, I could sometimes talk myself out of it. This isn't to say that allergies don't exist, because they do! But there could be an emotional component too. If it doesn't resonate in any way, just ignore all that. It's going to be harder with DID anyway. It would be wonderful if all your docs and therapists etc could work together to tease it all apart.

Anyway I hope you can feel a little lighter even with just writing it out here and feeling understood or semi-understood.

[dollyvee]

We're just at a point where we need someone to help us tackle this from all the same angles that we have to, and finding someone both willing and capable of that isn't easy. At the very least, we need to find doctors/providers that are willing to work together with each other to help us. We're working on it. It's just taking longer than we can really handle on our own

I'm sorry asdis and perhaps this is the part that is most triggering. Looking back over what's happened over the last 10 years, I think I was hoping that someone would have all the answers and sort it out, much like how I hoped FOO would be there for me in the way that I needed when I was struggling, but weren't. In a way, I had to be my own best advocate and learn as much as I could, and temper it with what the doctors could or couldn't tell me, and find someone that had more knowledge about what happening. It was really stressful. It wasn't until I started seeing the functional medicine practitioner that she eventually linked it back to mold (again, only part of the problem though and didn't touch on MCAS), but even that took a couple of years. Me having to fight for my health hasn't really stopped.

But what I was trying to say above is that some times it takes a while for the inflammation to die down and your body to stop becoming reactive to things. I cut out histamine in the summer and would fall asleep if I ate anything with tomatoes. Now, I had a pizza last week and didn't feel that. So, I think over time my body has processed the extra histamine that was there and allowed more tolerance though I'm pretty sure it will come back if I eat too much histamine.

Sending you support 
dolly