#literally out of all of my chronic illnesses (of varying degrees of moderate to severe) allergies pisses me off most consistently��..

[callixton]

i think allergies should kill themselves forever

[nano-the-robot-blog]

A Vent

Hello. My name is nano (not really, of course), I’m an art student from rural Britain, and I really need a place to vent right now. I don’t know if anyone will read this, or if any of those people will know me, but at this point I don’t really care.

Since childhood, I’ve lived a very privileged life. My family aren’t well off but we get by, my father has always had a job and my mother has always looked after my brother and I. They have their flaws and we’ve had our arguments, but my parents really are amazing. However, unfortunately, that doesn’t grant me ease of passage through life - especially with the world in the state it’s in right now.

I know that I have it much better than a lot of people, and I have always known that. I tend to get things in halves. I have autism spectrum disorder, but I’m not nonverbal and most people don’t even notice. I have fibromyalgia and chronic fatigue syndrome, but I’m not wheelchair-bound. I have depression and anxiety, but I’ve never attempted suicide. I have an atypical eating disorder, not anorexia or bulimia (for those out there who do suffer with any of the things I’ve mentioned, my heart goes out to you. I may never understand your struggle but I will always strive to do the best I can to help, and I hope that you can all get through your respective hardships).

Now, as you can probably tell, I’m a very average person. Average height, average weight, average education and average skill levels. My brother, on the other hand, is a little less conventional. He has moderate to severe autism with learning difficulties which he was diagnosed with at quite a young age, and although he has yet to be diagnosed with it, my mother swears that he has pathological demand avoidance. He is also fairly tall and quite overweight, making him a formidable opponent.

These factors add up - the autistic meltdowns, the avoidance of any helpful behaviour and the refusal of commands and the sheer size of him - to make him an absolutely unbearable person to live with. He frequently attacks my family and I, both physically and verbally and with varying degrees of severity. It gets to the point, fairly often, that the police have to be called. My entire family have had to literally sit on his back in order to restrain him before, and it only gets worse once he is taken into hospital. At one point, he had four fully trained, adult police officers holding him down on a hospital bed. He’s had handcuffs, leg braces, the whole nine yards. It’s hell for everyone else in the family - and not just the humans. We have a menagerie of pets in the house as we are all animal lovers (aside from my father, though he does adore our dogs) and, though my brother doesn’t directly hurt them, the effect on them is clear. Our two dogs, one a huge Labrador/Rottweiler/Springer cross and the other a tiny Jack Russel/Pug mix, are utterly terrified every time he kicks off. They can even feel the tension in the air when we’re “walking on thin ice”, as my mother puts it, or when he’s on the edge of a meltdown. We also have three cats who don’t seem too bothered, although he has held up my cat (the oldest, and the smallest) and threatened to choke her before. I also have four beautiful young budgerigars who experienced his wrath for the very first time today, and it’s safe to say that they weren’t a fan. I’m hoping that they will be okay, though, since wild budgies will suffer much more worrying encounters in Australia.

Today, however, my brother went too far. He directed his anger towards the animals - my animals specifically - and me. My mother spent three days painting a gorgeous high sleeper bed which I only just got. I tried to help out, and I kept her company, but I’m just too sick to do such a physical task. Mom just naturally took over and eventually offered to paint the whole thing - even though she herself is ill. Like I said, my parents are amazing. The bed was a real labour of love for Mom, and she did an amazing job - despite the various hardships faced during the process. It was a real bonding experience for my mother and I, which was sorely needed as my mental health is pretty much non-existent at the moment. I’ll explain this as briefly as I can, just to give an idea of how much this affects me.

Recently, I’ve been suffering hugely with an atypical eating disorder. This possibly started when my ex broke up with me about two years ago, and very slowly built up over the past two years until recently, I stopped eating almost entirely and cut myself down to one small meal per day. The sudden change may or may not have been caused by my final major project in college, which I put my heart and soul into and which ended recently. I got the grade I wanted, but the residual stress left from it certainly took its toll, and my fate was sealed. I became more depressed than ever before and my anxiety, autism and (at the time mild) ED suffered the same way. I isolated myself from all of my friends, even my best friend - our relationship has been recovering slowly but surely from a very rough patch we had last year. I love her more than any other human, but I find it simply impossible to connect with another human being at the moment. My relationship with my parents is also hugely strained since they have to force me to eat now, and though we both know that it’s for the best, it puts a new barrier up between us. Another rather significant contributor is the fact that I have feelings for somebody I can never be with, and I’m quite sure he’s catching feeling for another girl who I’m also friends with, which simply gives me more reasons to distance myself from them. Regardless, back to the current situation.

It started small and simple, like all the worst things do. My mattress is in my parents’ room at the moment, as I can’t risk touching my paint-covered bed. My room also stinks of paint which makes it hard to sleep. My snakes are still in my room, though, as we couldn’t move them. My brother threw a cushion at me through the door. That’s all. I was lying in bed, exhausted and ill, and he threw a pillow at me. I said nothing, threw the pillow onto my parents’ bed, and went back to watching videos. A few minutes later, he threw a doorstop at me. It was heavy, and hit me in the hip, so it hurt a lot more than the cushion did. Again, I said nothing, and texted Mom to tell her what was happening. She came up the stairs pretty quickly, questioning my brother about it in a sympathetic tone. She knows him best, and is the best at diffusing situations like this. Like me, he said nothing. After a short while of her talking to him, though, he shoved past her out of his room and into hers, where I was still lying. I was hesitant to leave the bed, stupidly enough, because I wasn’t wearing trousers. However, my brother soon began threatening (nonverbally, of course) to throw his entire fifteen-pound body onto the mattress and on top of me. I wasn’t about to find out how many of my bones would be broken as I’m fragile enough already, so on request of my mother, I scurried off to the other side of my parents’ bed. He followed. I was hissed at to go into my room, which is what I did. No more than five minutes later, with me now holding a very nervous small dog, I hear a fierce BANG! and my door jumps. I’ve got an old door, one of the originals of our house, and I’ve never seen it budge before. At this point, I realised that he was going to break it down. Another few minutes passed until it happened once more, and once more was all it took. I stuck my legs out, thankfully, and caught the door on my feet, pushing it to the side. Thank goodness it somehow didn’t reach the snake tanks which were mere inches away, as they would have no doubt been shattered. We all knew it now; his anger was directed toward me and me alone. He kept advancing and my mother shooed me out of the room. I grabbed the dogs and hurried them into the utility, turned the light off and crouched down with them in the diffused light from the kitchen. He couldn’t see me, nobody could see me. We were safe. They all came downstairs fairly soon and my dad found me first. He said nothing, simply gave me a stressed look and went back into the kitchen. My mom then came out a few minutes later and informed me that my brother had backed himself onto my sofa, which is currently up against the snake tanks, and had started banging his hands on the glass. Any reptile owners well know that this is an awful situation for any reptile, especially snakes. Even just tapping on their tanks stresses them out to no end. They can stop eating for weeks, and if it’s bad enough, the poor things can even die. I did check the snakes after the whole ordeal and thankfully, they are all still alive and at least one of them is still ready to eat. My brother soon found my hiding place and started advancing again. I had nowhere left to go - my room, the only safe place, was destroyed. I just had to run upstairs and hang around for a while. I could hear him shifting furniture, and the occasional yell from one of my parents as he hit them. I know from experience that his blows are nothing to be scoffed at.

I don’t remember exactly how it happened, but somehow he ended up in my room again, but this time he turned his attention to my bed. Mom was appalled. The face she made was one of sheer horror; she had spent so much time and energy to get it to such a good condition and he had just ruined three days of work. She cried into my shoulder, weeping about the lack of consideration he has for others. I agreed, and we both muttered that we didn’t want him here any more.

That may seem harsh, to you. Who would want their own brother to leave for good? I would have agreed with you, if it weren’t for literal years of constant abuse from this boy, this monster. He’s like Jekyll and Hyde. One minute he can be a perfectly innocent child (he is 15, but his mental state is at the point where he is internally 8 or 9), and then within moments he can switch to some inhuman, unfeeling being of nothing but hate. He cannot be reasoned with, he can only be fought.

He’s gone now, they all are. Mom and him were taken to hospital in an ambulance, and my father followed shortly after. My snakes are alive, my budgies are fine and everything has gone quiet. This will happen again, and it’ll never stop until something is done - but that’s just the thing. What do we do? We’ve jumped through the hoops, we’ve waited years for people to help us and nobody will.

I’m going to be honest, I don’t want to seem like an attention seeker, but I genuinely fear that if this type of thing carries on, I’ll try to kill myself. Tonight put so much strain on my mental state, and each new episode increases that strain so much, that I don’t think it will be too long until I snap.

Sorry that this has been my first post on this blog. It was meant to be an art blog but I’m no longer going to be doing that as I’m completely rebranding myself. This will be a personal blog for me to write about my life - a kind of journal, I suppose.

All the best,

nano

[not-poignant]

Speaking of the stomach symptoms that Ef has to go through, how do you cope with your own symptoms and do you have any protips for dealing with the pain?

Hi anon!

This one's tough, because the cause of the pain can be so multi-factorial. Digestive issues - for the best pain treatment and management - require:

1. A diagnosis 2. Understanding your allergies and intolerances*** (and they are not the same thing) 3. Understanding your triggers

The thing is, a diagnosis can be as good as a cure for some people who are lucky enough have treatable digestive conditions. A person with a finicky digestive system who learns they're gluten intolerant has a cure, even if it's not an easy one (avoid all gluten - symptoms and pain gone! Huzzah!)

Anyone who is having difficult digestive times should, imho, never just leave that as something to self-diagnose and just accept. I get diagnosis is a matter of privilege in some cases, but where it's not, this is one area where you don't want to fuck around and find out. There are literally hundreds of different things it could be, all with different treatments, medications, options, and supports out there. And I do know people who've ended up with severe autoimmune conditions and losing like, feet of their intestinal tracts, or cancer-like conditions, because of chronic diarrhea in particular, because they just 'waited' on the pain they were experiencing in their digestive tract.

And then the rest of this post is mostly like, 'I can't help you because bodies are diverse and 'stomach symptoms like Ef' means hundreds to thousands of different illnesses and hell, I've suggested pain management techniques in that story that you can try right now, and also I can't tolerate any pain treatments so good luck anon but I got nothing.' But like, the long scenic route version.

I can't speak to your issues, anon, because I don't know what your diagnoses are. There's not really many 'idiopathic digestive issue' diseases, but there are a lot of chronic illnesses that can be diagnosed through exclusion that can't be cured. But again, of those - and there are many - I don't know what yours are. And what I have, may not apply to you. It may not even apply to someone with exactly the same symptoms I do.

A person having Efnisien's symptoms could just have some intolerances that could be easily cured by avoiding those foods. Another person might have cancer. Like...you'd be amazed how many diseases cause non-specific and painful cramps and diarrhea. Sometimes it seems like all of them can.

For example, one of my many digestive illnesses is severe medication resistant gastro-esophageal reflux disease. Everyone in my family on my mother's side has it to varying degrees.

My grandma has needed to have two Nissen fundoplication surgeries to survive it, and has taken a proton-pump inhibitor since they were invented to manage it (since the 1980s), and because she's been taking a PPI for 40+ years, her stomach is now also riddled with hundreds of (so far) benign polyps and cysts as a result of the medication that she must take.

She avoids certain foods that I don't have to avoid, but I also need to take more medications than her, my food triggers are different to her food triggers, my brother's food triggers are different to my food triggers and he has the same disease and presumably, with a very similar genetic make up because it comes through the family line. His is very severe like mine, and nearly caused esophageal cancer for going so long untreated (the medication to treat has side effects, but leaving medication-resistant GERD alone can cause cancer of the throat and esophagitis, which my brother has been diagnosed with). My sister also has it. My Mum's is very mild, and she just has to avoid certain foods but needs no medications. And so on and so forth.

So how I manage the pain of just that one digestive disease - for I have more than one - (PPI and H2 receptor antagonist, certain food avoidance, no NSAIDs at all) is different to how my grandmother manages the pain (two surgeries, food avoidance that I don't have to avoid, PPI only), is different to how my mother manages the pain (food avoidance only, and different foods to me), is different to how my sister manages the pain (heat packs). Even the specialists we see are different, and our doctors suggest different management protocols. In that sense, I'm lucky, because my GERD can be medicated and I can generally enjoy eating and not choking on my own stomach every single night. Though I still have 'breakthrough days' where I do wake up choking on my own stomach acid, and have a sore throat / cough for the rest of the day.

So like, I can't take anti-inflammatories for the pain because that affects the stomach lining and mine's already fucked from GERD, but you might be able to. I can't take Buscopan for the pain, but you might be able to. I can't take Immodium on bad days, but you might be able to! Don't get me started on opioids or tramadol, it is very much like my body wants to suffer sometimes, the way I can't tolerate meds that are specifically for pain management. :/ I highly recommend looking up some support groups for the diagnosis/es you have, and seeing what people are recommending.

Because I don't tolerate almost all painkillers, I can't take any pain relief for my digestive illness/es (of which there are like...four, not including doctors thinking that my genetic cancer is causing some of it too, which is just a whole lot of oh well) that isn't just paracetamol (acetaminophen) which doesn't work.

There are no medications that help my chronic diarrhea at the moment, because it doesn't seem to be an autoimmune disease (at least so far, despite flagging for mild autoimmune stuff in every bloodtest I've ever had since I was 18 years old, but that's another story), but if yours is autoimmune in nature, there will be options that aren't pain-medication that may help you, and anything that helps with symptoms also, by default, helps with pain.

Some of my symptoms/pain is stress-triggered (my PTSD and my tumours can cause massive and unusual amounts of adrenaline to dump through my system, and one of the side effects of adrenaline entering the system is diarrhea - it's part of the flight/fight response: digestive disturbance). Therefore, less stress would certainly help me. But one of my specialists just laughed at me gently when I asked him how people stress less. You have to be awfully privileged financially to even try, even without a diagnosis of PTSD. And my tumours will still likely do this to me for the rest of my life, whenever they just feel like manufacturing hormones. They're neuroendocrine tumours, they want to fuck up my hormonal system, lmao.

Basically, anon, your question is kind of too vague to suggest much more than what's in Falling Falling Stars - perhaps some pain killers, perhaps some food avoidance, perhaps some heat or cold packs. Who knows? I have no idea what your diagnoses are, what you can tolerate, and I know what other people use for support, I can't, so I can't speak to how good those things are.

I'm going to level with you, anon. I have no protips for dealing with the pain aside from sucking it up and dealing with it, because I have almost no other options myself except to develop a high pain tolerance (which I have, which is terrible, because it means I wait too long to see doctors for very serious issues, and this has fucked me over more than once - one of my specialists literally yelled at me for it only last year: 'WHY DIDN'T YOU COME IN SOONER, DO YOU NOT TRUST US' which was great).

I'm really hoping you are not in my situation, because my 'dealing with the pain' is a version of 'I am in moderate to significant and sometimes severe pain 24/7 and no one can do anything to help me.' I wish it was only my digestive issues causing that, but the Fibromyalgia is certainly part of that. Sometimes the only way to deal with pain is to see a psychologist, and learn how to live with pain.

Find the support groups for your illness/es anon, they will have big personal lists that everyone is doing, they will be highly diverse and everyone will be doing something different for pain management, from ketamine infusions, to low-dose naltrexone, to ultrasound therapy, to heat packs, to a billion different medications, some for pain, some for your diagnosis. Having a diagnosis will help, because there are medications for specific diseases and disorders, someone with Crohn's will be on a very different cocktail of drugs compared to someone with IBS-D type compared to someone with IBS-mixed type, compared to someone with food intolerances.

And if you're lucky, your issues will be caused by intolerances, in which case you have a cure, even if it's an inconvenient one. But that cure (avoiding the food) can permanently remove the pain in some cases.

I'm sorry I can't be more help. There's just...thousands of things that can cause diarrhea and stomach cramps, and thousands of ways to manage those things. It's too nonspecific, beyond what I've already suggested in Falling Falling Stars. And anything more than that comes with side effects, and it's not good to already strain a digestive system that's strained, when you can potentially avoid it.

*** Please remember that there is almost no way to know your intolerances except through a food elimination diet, and anyone trying to sell you a blood test that tells you otherwise (i.e. naturopaths) is a fucking charlatan. There are, I believe, only 2-3 intolerances that can be read through blood test, one of them is lactose. There is no such thing as an accurate 'intolerance blood panel.' And only an allergist can diagnose allergies (with the exception of coeliac and again probably lactose issues lol), and finally, allergy =/= intolerance. Elimination diets should be overseen with the help of a doctor or specialist or dietician, because they are difficult to do and can cause or exacerbate eating disorders and disordered eating. I am not a doctor, always talk to your doctor about this stuff first, if you're concerned.