____twoism

dana wrote:How about "I saw cunts"

nah I love cunts and might accidentally end up banning myself

dana wrote:How about "I saw cunts"

They lack both the warmth and the depth.

Cupz wrote:

dana wrote:How about "I saw cunts"

nah I love cunts and might accidentally end up banning myself

We should all hop in and drink the coolaid together. Mass banicide sounds like a great weekend activity.

Gosh I'm fucking sick of this heat. Fan does piss all. Freezing jars of fucking coconut oil just to stay cool. Absorbing icecubes. Contemplating flooding downstairs and making it a swimming pool...

Went and bought a washing up bowl to fill with ice cubes and water and ice been sitting with my feet in it like a proper old woman. Feels glorious. You've gotta do what you gotta do

Feeling my health conditions today.

I was on a drug for them that kept them at bay for a solid 10 years but it suddenly stopped working a few years ago. They moved me onto another which stopped working last summer and I've been in pain ever since.

You don't need a lot of pain to drive you fucking insane, it just needs to be relatively constant and spike at the worst fucking times. I was lucky that it didn't take me out for the weekend of the listening event, but God, June has been a nonstop shit show. Can't get anything done. Bonus: at least two of the big OTC painkillers (Ibuprofen and anything with Codeine in it like Cocodamol) are actively dangerous to take with this because they make it worse.

Hospital next week, maybe they can do something, and I'm lucky I live in a place where none of this costs me to manage. But still. Fuck chronic health conditions, fuck em straight to hell.

Get well soon Megan.

For sure sounds rough, take care! The relentless heat doesn't help I can imagine. Big hugs and kisses from this end!

Negamuse wrote:Feeling my health conditions today.

I was on a drug for them that kept them at bay for a solid 10 years but it suddenly stopped working a few years ago. They moved me onto another which stopped working last summer and I've been in pain ever since.

You don't need a lot of pain to drive you fucking insane, it just needs to be relatively constant and spike at the worst fucking times. I was lucky that it didn't take me out for the weekend of the listening event, but God, June has been a nonstop shit show. Can't get anything done. Bonus: at least two of the big OTC painkillers (Ibuprofen and anything with Codeine in it like Cocodamol) are actively dangerous to take with this because they make it worse.

Hospital next week, maybe they can do something, and I'm lucky I live in a place where none of this costs me to manage. But still. Fuck chronic health conditions, fuck em straight to hell.

Hey Negamuse, I'm so sorry you are dealing with this. I completely feel your pain. I was struck down with a chronic health condition in 2013 and have only recently gotten to the bottom of it. Sadly, the NHS have very outdated and blunt knowledge/tools and testing for such things is almost non existent, and so I took matters into my own hands, with pretty much daily research for around 13 years.

I am happy to say I am almost fully healed and have learned an incredible amount of information along the way. If you ever want to chat about it, to see if I can help you, please feel free to reach out. I understand talking publicly about it can be awkward but you are welcome to DM me if you want to chat.

I've helped a few friends through my knowledge and have improved their quality of life hugely. Don't worry it's not any 'alternative' crap, it's all rooted in the latest science and the cutting edge of testing. I completely understand if you'd rather not take advice from some random guy on the internet but I am now one of these insufferable dicks that fixed my issues and just want to help others. Chronic health issues are complex but there are some amazing basic things that can apply to many of them.

Thank you for offering, but it's not mystery pain it's a known condition and sadly it's just one of those things that doesn't have a cure. I have a hospital appointment tomorrow and I'm hoping I can convince them to throw steroids at it and that'll buy me a few months off.

Negamuse wrote:Thank you for offering, but it's not mystery pain it's a known condition and sadly it's just one of those things that doesn't have a cure. I have a hospital appointment tomorrow and I'm hoping I can convince them to throw steroids at it and that'll buy me a few months off.

No problem at all. I am so sorry to hear that. I hope you find some sort of relief soon.

Negamuse wrote:Feeling my health conditions today.

I was on a drug for them that kept them at bay for a solid 10 years but it suddenly stopped working a few years ago. They moved me onto another which stopped working last summer and I've been in pain ever since.

You don't need a lot of pain to drive you fucking insane, it just needs to be relatively constant and spike at the worst fucking times. I was lucky that it didn't take me out for the weekend of the listening event, but God, June has been a nonstop shit show. Can't get anything done. Bonus: at least two of the big OTC painkillers (Ibuprofen and anything with Codeine in it like Cocodamol) are actively dangerous to take with this because they make it worse.

Hospital next week, maybe they can do something, and I'm lucky I live in a place where none of this costs me to manage. But still. Fuck chronic health conditions, fuck em straight to hell.

Sending love and healing energies your way. I know it might sound quite silly, but some teas are natural pain killers as well as other such things like certain vegetables/creams can help curb off the waves. I suffer myself with a similar thing. I hope it clears up soon

Are you local to Sheffield? Its been high pollen right now and I have been dosing myself with many anti-histamines and even breaking out the steroids when I have an attack. Its just been that kind of summer, I've felt bloody awful like I am going to die. I am getting better now the weather has settled down. So maybe it will for you too?

Negamuse wrote:Thank you for offering, but it's not mystery pain it's a known condition and sadly it's just one of those things that doesn't have a cure. I have a hospital appointment tomorrow and I'm hoping I can convince them to throw steroids at it and that'll buy me a few months off.

Sorry I just have to add, I was told that my condition(s) were incurable, and yet I cured them I was diagnosed with Chronic Fatigue Syndrome, Arthritis and Chronic Gastritis. I was told I'd just need to manage them through my life, and was on all kinds of meds for years. I am now pain free and fatigue free and on no meds. Still got some digestive issues but nowhere near the horror i used to experience. I have helped my mother also, who was told her condition (Myasthenia Gravis) was incurable, but she's doing a hell of a lot better now too. She followed the NHS advice her whole life and gradually declined.

The gut and lymphatic system underly so many chronic health conditions, with genetics playing a huge part obviously, but even then there are ways to help. Anyway, I literally have no idea what's wrong with you and so shouldn't be making any assumptions or offering hope, but it was more just to say don't always take an 'incurable' diagnosis as fact. A lot of the time it just means they don't have the tools to fix you.

Well, it's Crohns disease which isn't exactly uncommon but it's one of those that mostly doesn't kill you and incredibly unglamorous so it's down the list of things they throw money at to find a cure. One day they'll work out something with stem cells or crispr or something I'm sure.

Loads of people have anecdotes about what worked for them, but it's so individual what triggers it, and I've never found a supplement or diet that helps. Believe me I've tried.

It's just getting on the right drug and hoping it lasts long enough that you're not burning through them faster than they're discovering them. I was lucky, like I said I had a ten year run of no symptoms but the last year has been... difficult.

Anyway, they've lined up the next one today and pumped me full of steroids. Should be alright in a week or so and then we'll see.

Negamuse wrote:Well, it's Crohns disease which isn't exactly uncommon but it's one of those that mostly doesn't kill you and incredibly unglamorous so it's down the list of things they throw money at to find a cure. One day they'll work out something with stem cells or crispr or something I'm sure.

Loads of people have anecdotes about what worked for them, but it's so individual what triggers it, and I've never found a supplement or diet that helps. Believe me I've tried.

It's just getting on the right drug and hoping it lasts long enough that you're not burning through them faster than they're discovering them. I was lucky, like I said I had a ten year run of no symptoms but the last year has been... difficult.

Anyway, they've lined up the next one today and pumped me full of steroids. Should be alright in a week or so and then we'll see.

My heart goes out to you, chronic stomach conditions are so debilitating and not to mention stress inducing as you start to go mad and overthink everything you eat and do incase it causes a flare up, and that in itself becomes a self perpetuation mechanism / vicious loop due to the two way street of the gut/brain axis.

The trigger for my illness was living in a water damaged property for many years, we had no idea we were living and sleeping beneath a flat filled with mould and dry rot. My wife also got quite ill but I was off the scale, I can now see that was due to my specific genetics. And so while we can be born with genetic short straws, it tends to be a trigger that manifests the illness - stress / trauma / poor lifestyles / environmental triggers etc.

I am sure you've done a shit load of research yourself and have tried all the diets like ketogenic, specific carbohydrate diet (SCD) etc so I won't go into that, I'll try and keep my suggestions to things you maybe haven't tried. I myself had to eat nothing but chicken and rice for 6 months while I healed my gut lining. I'm happy to say the misery was worth it though.

I don't know if you've come across this before but there is a substantial amount of evidence to suggest Crohns is largely a lymphatic issue. In a healthy body, lymphatic vessels in the gut act like a drainage system. They absorb excess fluids, dietary fats, and immune cells, but in a Crohns sufferer the tiny lymphatic capillaries in the gut (lacteals) become structurally warped, this means they lose the ability to drain and this is what leads to the painful ulcerations on the gut lining. This is also what triggers the "creeping fat" phenomenon in Crohns patients, where a fatty tissue grows around the intestine and releases it's own toxins called cytokines, causing even more inflammation and immune dysfunction.

Gentle lymphatic massage techniques can really help, I do one every morning when I wake that takes literally 2 minutes (I can send you a video of this technique). It essentially involves rubbing and slapping specific areas of the body in a specific order to get the overall lymphatic system working better. The very first time I did it, my body released years of backed up toxins in my body overnight, I woke in a toxic pool of sweat in the morning and my god I felt so much better. it was the most incredible feeling! Very simple but very powerful. Holla if you want the link, I'd post it on here but I had to pay for it and so it would be unethical to make it public.

The other thing that can really help the gut lymph system, and is indeed the only supplement I'd suggest you take is micro encapsulated butyrate. Butyrate is the preferred energy source for your gut lining cells. It fuels them to produce tight-junction proteins, effectively repairing the broken structure of your gut wall. By sealing the leak, butyrate stops the toxic flood from ever reaching and overwhelming your lymphatic system in the first place. It's very safe, cheap and has no side effects. I've spent literally thousands of pounds on supplements over the years and this was the only one that truly helped my gut.

One of the common things found in Crohns sufferers is a phenomenon called 'Low Vagal Tone' - this is when the vagus nerve (which controls all kinds of bodily systems) starts to malfunction, this can be from stress / trauma / poor diet / environmental toxins etc. This is essentially what the so called 'gut brain axis' is, it's a nerve that goes from the brain to the gut and modulates immune system performance amongst other things. This seems to be what the mould in my flat ultimately attacked, with all the gut, joint, fatigue and brain issues being downstream from that. The toxins from the mould bury themselves in the fatty sheath around the nerve and start to cause it to demodulate. This then fucks with the gut immune system and causes bacterial dysbiosis and gut and brain inflammation. But so many things can affect vagal tone from having a baby to stress at work to childhood trauma etc

There are some really easy ways to improve vagal tone and ergo immune system regulation - humming, yes the monks knew a thing or two, but deep OM type humming is an amazing, free way of improving vagal. tone. Just sitting and humming as deep as you can go for a few minutes very day literally stimulates the vagal nerve and helps the gut brain axis hugely.

Breathing - bit of an alternative therapy classic but genuinely so powerful and super simple. Just find some quiet time and lie and breathe - 4 seconds in through your nose, 8 seconds out through pursed lips. Repeat for as long as you feel is right, I normally do a few minutes at a time. There is nothing else that calms me as much as controlled breathing and it truly does wonders for the vagus nerve.

Vagus nerve stimulation device - I use one called Nurosym and it works amazingly well. It just clips to your ear and you use it for an hour a day (best when you are relaxing but you can even do it at your desk or whatever). There was a clinical trial done on children with Crohns using these devices and a staggering 50% of them went into remission. Sounds too good to be true but you can read about it here - https://feinstein.northwell.edu/news/th ... ulation%20(.

I have one of these devices and would be more than happy to post it to you to try out for a few weeks to see if it helps, then you can decide if you want to buy your own. They range quite drastically in price, the Nurosym that I have was originally £799 (£599 now) but you can get other makes for around £200 now I think, that ultimately achieve the same purpose. Nurosym is considered the best however and they do a Klarna type payment thing to help spread the cost - https://nurosym.com/en-gb/products/nuro ... pPVvS7hT0P

Lastly - infrared saunas. Unlike traditional saunas that just heat the air around you, infrared wavelengths penetrate up to two inches into your tissue, raising your core body temperature and triggering the release of cellular guardians called heat shock proteins (HSPs). These proteins act as a brake on the immune system, down-regulating the master inflammatory switch and significantly lowering systemic levels of TNF Alpha, the exact same inflammatory cytokine that Crohn’s biologic drugs are engineered to suppress. Also they just make you feel so relaxed afterwards, which is great for the vagus nerve.

Okay that will no doubt do for now, I don't want to overwhelm. Hopefully there's some stuff in there that you haven't tried and may help you. If you'd like to try the Vagus Nerve stimulation device then drop me a DM with your address and I'll pop it in the post for you, no problem at all.

Just know there is always hope. I was told point blank that there was no cure for any of my ailments and that I was just getting older and would have to manage it as best I can. I thought fuck this, I'm going to actually learn about it all myself and see what I can find out and now I am now off all my meds and feeling so much better. Once I had fixed my gut lining, all my other aches, pains, brain inflammation and fatigue slowly faded away.

Negamuse wrote:Well, it's Crohns disease which isn't exactly uncommon

Awh, my mum has this as well. She had to have a blood transfusion a couple of years ago, I nearly lost her. She's always in and out of hospital. I wish there was something they could do....