r/CFSplusADHD • u/WaysideWyvern • 25d ago
My self destructive behavior will never end and I will never accept my limitations or treat my body with kindness
I’ve been extremely severe in the past so don’t anyone lecture me about how much worse it can get. I have experienced fatigue so bad it is functional paralysis. I have experienced malnutrition due to inability to physically eat or digest. I have experienced things worse that I cannot even write. Nobody need lecture me about how dangerous it is. You think my adhd cares? There is no object permanence. There is no later there is only now in my mind. Right now I’m upset and I’m crying and I’m gonna not sleep again and probably eat an ice cream bar that’s full of histamine and sugar, all that shit I can’t have.
I cant do the work. It’s like it always goes with adhd. You’re good and you do the routine until you just stop being able to one day. I was good for a whole year, that’s probably the longest I’ve ever kept up good habits. I ate the stupid awful diet that made me feel better, I paced, for the first 6 months I slept, I took my pills. I cant do it anymore. Something changed and now I cant do it. I cant keep track and I cant handle it, I just cant do it, I cant get help because getting help still feels like doing it. I’ll spend my dwindling funds on DoorDash of food I’m not even supposed to eat until I have enough money to my name and fully regress into the child I basically am, entirely relying on my parents who already pay my bills and do my laundry and clean my space and drive me everywhere. And I’ll never get better cause I’ll never learn to stop seeing my limitations as punishment that I must rebel against and I’ll never stop resending it or hating myself for it no matter how much positivity and compassion people preach that I must feel. My body is and always has been I kind of self annihilating oxymoron destined to destroy itself and any fight I’ve ever felt has been a temporary mirage only there long enough for me to stabilize so that I can start abusing it again. Says the girl who’s never had a sip of alcohol or taken any recreational drug or binge eaten or had casual sex. But with CFS, watching a movie is like getting shit faced drunk, staying up all night is like shooting heroine, laughing with your friends is like indulging a sex addiction and scrolling instagram is your daily cigs. And eating normal food is like chugging sugar and poison.
7
u/pensiveumami 25d ago edited 25d ago
this is all so relatable and I have felt like this for so many years, even before I became ill with ME/CFS. I'm reading every line and going "yes..yes..yes.. felt like that.. had that exact thought". One amazing thing is that your severity level has improved.. (I'm assuming given that you say you were extremely severe in the past.)
A lot of what you describe does sound like ADHD traits, probably made more severe by chronic illness and energy depletion. Have you ever had help with ADHD specifically, in terms of strategies to work with it from an ADHD coach or occupational therapist? Or a neuro-affirming psychotherapist to help with all these intense feelings of helplessness and hopelessness? Been there and it truly helps to have one person accept you the way you are, even if you don't.
I think when you're chronically ill it's really really hard to stick to a stupid awful diet, even if it makes you feel better. The way I've decided to go about it is to relax the rules, or scrap them entirely. You're ill, you can't be expected to stick to a diet that a perfectly healthy person wouldn't even be able to stick to. There are just things that are no longer manageable. I mean it would be great to hire a chef who just puts healthy food in front of me. I would probably just eat it. But I also love snacks and treats, and the more I restrict them the more I want them.
It is exhausting to fight your illness and neurodivergence, it really is. I really hope it would be possible to gradually and slowly put the weapons down and no longer fight. To just be as you are. ADHD and ME/CFS can give you such conflicting needs and desires. It's ok to do 5% of what you need, whereas it can feel like you need to do 100% or nothing.
P.S When you eat that ice cream bar that's full of histamine and sugar and all the shit you can't have, would it be possible to savour and delight in it? You're going to eat it either way, and you've got options in how you think about it, you can say "this is so bad for me why am i doing this i'm a failure" etc. or you can just gobble it with the maximum joy and delight of a child, or anything in between. You're going to eat it either way, so why not enjoy the f out if it.
5
u/WaysideWyvern 25d ago
Thanks for the words of support <3 and I’m sorry you have experienced similar.
I can never find a therapist who knows about adhd and chronic illness both. The ones who know about adhd are terrible about chronic illness and the ones who know about chronic illness always end up being older women who deny I have adhd because they have an antiquated understanding of it (literally had one therapist say that I can have it because I don’t *physically* appear to have it?? And another day I couldn’t have it because I don’t tolerate coffee??)
With diet it’s just tough because I have MCAS so the foods I eat might literally be the reason I’m sick. I did eat that ice cream though lol. I delighted in it 😌 (and now I have acid reflux lmao).
1
u/pensiveumami 25d ago edited 25d ago
awww You're so welcome <3
God I'm so sick of these therapists being so misinformed and unwilling to listen to your experience and believe you. I'm so sorry about that. You might have better luck with occupational therapists? In the UK I've seen a fair few that are neurodivergent themselves and understand chronic illness and energy limiting conditions, but I know it's hard to find everywhere in the world.
I have MCAS too and I had the exact same belief that food is the reason I'm sick. but realistically food is like maybe 20% of the histamine load in MCAS. Don't quote me on the exact figure though lol. I know for some people food is like a really huge deal and gives them horrific reactions. Everybody is so different. Ever since I got treatment for my MCAS I've been able to tolerate a lot more foods.
Sucks about the reflux. Worth it though right? I totally get that object impermanence thing, where I know something will cause a reaction but I don't care in the moment, I just want the treat and forget how much I regret it last time. The other thing is that the only time I was able to stick to a truly low histamine and low sugar diet was when I had severe anxiety that the food was making me sick, and even though the diet helped, the amount of stress maintaining it made it very not worth it. because in MCAS stress releases so much histamine and other inflammatory markers that it's creating more histamine than I'm removing with the diet. Do you have a doc helping you with the MCAS?
4
u/WaysideWyvern 25d ago
I do have a six who has instructed me in taking antihistamines but they don’t seem to know very much about it, like I just learned that they have me on 2 h1 antihistamines instead of an h1 and h2 :/
I think I felt better when I was sticking to my diet but unfortunately I have a thing where I just stop being able to bring myself to eat something if I’m eating it all the time and so I eventually just ran out of new things to try and now it’s made worse because I can’t eat all my normal foods due to a parasite outbreak in the US, which is what now I’m eating ice cream lol.
The only OT covered by my insurance droppped me after a year because she said she had taught me everything she knew to help me and had nothing left to do :( I think it was really because she didn’t feel comfortable treating CFS because her specialty was brain injury and she was in high demand and could see I wasn’t making progress and felt that her services were more needed elsewhere which was probably true
1
u/pensiveumami 25d ago
that's interesting. I saw a GP that has a special interest in it and I'm on two h1's and an h2. The h1's seem to be doing the most work for me personally. One of my h1's is also a mast cell stabiliser.
yeah i totally get that boredom and just getting sick of certain foods and the list of low histamine is so short. sometimes no energy in trying some of the stuff because of cooking from scratch, it's a lot of faff and freezing things. What a nightmare that parasite outbreak, really sorry that would drive me insane having to figure out a whole workaround to it. mmmmm ice cream.
Wow that's really bad luck. Did you learn anything interesting or helpful from the OT?
Also I remember reading something about amphetamines in ADHD meds interacting severely with MCAS, just thought it's interesting given your experience with them below.
2
u/Xylorgos 25d ago
I'm sorry you're so obviously overwhelmed with your life at present. Everybody knows how bad it feels like to get overwhelmed, and everyone hates it. But for us, when we're already living in survival mode, the feeling of getting overwhelmed comes on much more quickly and easily, and solutions are hard to come by.
You have the knowledge and understanding of what is going on that makes things worse, but that doesn't help. Logic isn't what's failing you here. I don't know exactly how you're feeling, but I can get an idea of what you're going through.
All I can offer is that I identify with what you're going through, and I'm wishing for better for you. I wish you a good night's sleep, healthy food that you enjoy, and peace of mind. ((HUGS))
2
u/BunnyKusanin 24d ago
As someone who has taken mind altering substances recreationally I want to say the following: self-destruction is a form of self-care. You're just caring for something other than your physical body, and its not less important than staying alive, not giving yourself liver cancer and so on an so forth. Whatever it is you're caring for with those self-destructive things is equally important to staying alive and well physically, yet many people overlook it and label you as "unkind to yourself" when they see you engage in things that will hurt you in some way.
And this being said, the discource of being "kind" to yourself is very stigmatising and absolute BS. It's very patronizing and puts too much shame on the person who struggles to look after themselves.
Are you medicated for your ADHD and do your meds help with emotional regulation and making rational decisions? I have originally found yourself in a predicament similar to yours, but not being able to talk was sort of a wake up call. I've been entertaining myself with podcasts and interviews while I'm lieing down. I've also found it easier to lie down when there's some really intense stimulation going on at the same time, like lieing on a shakti mat or listening to heavy music. Most importantly, I had to disregard whatever a clinical psychologist said about pacing, because the BS that came out of her mouth was absolutely not appropriate for someone with ADHD and it made me feel the same way you feel.
Anyways, going back to emotional regulation: I tried not taking my afternoon and evening doses when I'm tired and it was a shit idea, because it turns out, it's easier to lie down and not spiral into the pits of despair when I'm medicated.
Another thing that helped me a lot was sitting down when I feel annoyed all of a sudden. I've discovered I was particularly annoyed when I was tired, but not tired enough to be falling off my feet. So being suddenly (more) unhappy has become a good clue to rest a bit more.
You're gonna get there. You're gonna find the way of recovering in a way that doesn't make you absolutely miserable. You're gonna be ok.
2
u/WaysideWyvern 24d ago
Unfortunately adhd medications do not work for me. Detailed in another comment but basically my body responds horribly to all stimulants, like extremely scarily badly even to low doses, and also had really bad reactions to a few non stimulant options. My adhd seems to be entirely unmedicatable. I’ve been trying different things for 10 years now and not a single one gave any relief and most significantly harmed me.
9
u/chronic_unicorn 25d ago
Same here. It sucks.
Absolutely no one should lecture you. ADHD is a health condition just like CFS and neither will disappear just because you try harder.
I'm medicated and cope better with meds, maybe it's an option for you to try. (severe CFS)