Living with Cystic Fibrosis - Lets talk about my health condition

追加: 2026-05-23

[00:00:00]So, in today's video is a completely different topic to normal. In today's video, I'm going to be talking about my health condition, which is cystic fibrosis. Now, you might be wondering, why haven't I made a video on this previously? And the reason for that is there's other YouTubers out there that talk about cystic fibrosis, but it often feels like it dominates the person. When you start making videos about your health condition, people only think of you as your health condition. It sort of defines you. And I didn't want that to be a case for my YouTube channel because my YouTube channel is about my hobbies.

[00:00:33]It's about lift surfing. It's about train surfing. Well, not train surfing anymore cuz YouTube doesn't allow it.

[00:00:38]But I wanted my channel to be about my hobbies. My health condition shouldn't define who I am. It's just a health condition. For example, when you're a child and you're like sitting in a circle and you pass the bean bag around between each child, everyone gets 30 seconds to introduce themselves. So, first Thomas gets the bean bag. Tell us about yourself, Thomas. Well, I like football. I like cars. I like playing golf. Okay, now let's pass the bean bag on to Ben. So then, Ben, tell us about yourself. You've got this health condition, haven't you? And then my 30 seconds is taken up talking about my health condition. So, just when I'm going to talk about my interest in trains, oh no, Ben, your 30 seconds is up. time to pass your bean bag on to the next child. So, I never get to talk about myself cuz I ended up using up the time talking about my health condition.

[00:01:33]And that is why I haven't talked about it before on my channel until now. So, in today's video, I'm going to make a full video explaining everything there is to know about cystic fibrosis. So, cystic fibrosis is a genetic condition.

[00:01:47]It's inherited from your parents. So someone can either not have cystic fibrosis, be a carrier where they don't have it but they have the gene or they have it. Both your parents are carriers and you inherit both the bad gene from both your mom and dad then you get cystic fibrosis. Now one of the most visible things about it for me is the fact I have to take medication as I eat.

[00:02:08]So every time I eat food with fattening, I have to take tablets as I eat and it is to what most people would see as a very large number of tablets. Even though to me that is normal, other people won't see it that way. So for the next 10 minutes of this video, I'm now going to have a rant about what issues that variable dose medication has caused for me cuz it should not cause any issues. It's not complicated to have to take a medication, but each time you take it, the dose you take is different depending on what you're eating and how much fat is in the food. So then it's not the medication itself that causes any of the problems. It is not me taking the medication myself that causes the problems. The problems are purely to do with how other people seem to somehow have an issue with the fact my medication is variable dose. So let's just go through this. My body does not produce enzymes correctly. Enzymes are used to digest food. That means I have to take tablets called cron which are replacement enzymes so I can digest the food I eat. If I do not take these tablets, my food will not digest and it will come out as one big massive stinking splatty poo. If I take too many of the tablets, my intestine will block up and I'll become very constipated. So the correct dose is essential. So in one day I take around 30 that's 30 zero of these tablets. The reason for that is so I can get a correct dose with the food. I can't simply take just a couple of highdose tablets. That won't work because of the fact if I eat a very small amount of food, I might just need to take one tablet. If I eat a big pizza, I have to take 12 tablets. Each tablet has to be a relatively small dose, so I can vary the amount of tablets so I have the correct tablets with the food. Now, this seems to cause so many [ __ ] problems with other people not understanding that. And you'll be really surprised quite what those issues are. Let's just go through them to explain [ __ ] I have to deal with. people thinking I'm trying to commit suicide because they think you're taking so many tablets you must be trying to kill yourself. No, it's just how my health condition works. And once again, I have to explain it to people like I'm [ __ ] poly parrot having to say the exact same thing just to explain to people that no this is normal for me.

[00:04:38]Number two is institutions back when I was a child not understanding the concept of variable dose and that could be anything where I go anywhere without my parents so someone else like an authority was responsible for giving me medications whether that's some sort of children's club whether it was like an overnight residential trip out somewhere or main thing to be honest was school and I think everyone knows by now I [ __ ] hate school for all kinds of reasons but sticking to the subject of medication the school could not understand the concept of available double dose medication cuz on all the sheets it's like what medication must your child take? When must they take it?

[00:05:14]What dose is it? Well, guess what? It isn't a fixed dose. Like because of their health and safety not allowing that concept to be accepted. The staff were not trained to work out the dose even though it's [ __ ] easy to work out. I knew the dose cuz I've been taking his tablets all my life. But no, the child can't be trusted. So they couldn't give me a variable dose. So what that meant was my mom had to make the exact same packed lunch for me. So every single day throughout my childhood at school, I had to eat the exact same food for my lunch just because the [ __ ] school could not understand what a variable dose medication was. Now the third issue was on the very rare occasion I wasn't able to eat my lunch properly. Either that day I felt really ill or knowing what how stupid schools are like for some reason I'd run out of time. Everyone didn't get enough time to eat lunch. I hadn't managed to eat it all. I'd still be forcefed the eight tablets had been written down for me on the medication sheet. Even though I hadn't actually eaten all of my food, so giving me the full eight tablets was giving me an overdose. But no, they still had to sign off had given me the medication even though I shouldn't have been given it cuz I hadn't eaten. You heard that correctly. They endangered my health just so they could tick off their medication sheet so that they conform to their health and safety. Then the fourth issue was I was actually entitled to free school meals. That's a nice thing, isn't it? My parents don't have to pay to feed me. I'm given free food. Well, guess what? I couldn't eat the free food cuz it's like a random thing they give you each day. One day it might be something low fat like a salad. Then the next day it could be something highfat like sausages. A very big difference in the amount of medication I'd have to take. But hey, they couldn't do that because of the fact they couldn't understand a variable dose medication.

[00:07:11]Then the fifth thing, and this is related to when you're given food at random. For example, it's one of those big boxes with loads of little tiny chocolates in them. We've got a box of chocolates today. Each person in the class can all get one chocolate each.

[00:07:26]Well, guess what? One of those little tiny chocolates was worth half a tablet.

[00:07:32]I can't take half a tablet. I would have to eat more food to make it up to one whole tablet. And because everyone had to eat their chocolate straight away, it basically meant I couldn't be given a chocolate while everyone else was happily eating one. And the sixth issue is pretty similar to that. Then along the lines of, "Oh, you've been such a good boy today. For your amazing behavior, we're going to give you a special treat.

[00:08:03]We're going to give you a chocolate."

[00:08:06]And even if it was a fulls size one, which would be like worth two tablets, they couldn't randomly give me two tablets. And the seventh issue was the tablets had to be kept in a secure place cuz apparently I couldn't be trusted with my medication cuz you can't trust a child to give themselves the correct dose when it was actually the school that was not giving me the correct dose because of their health and safety didn't trust them to do it. The absolute irony of that. So, it' be one of those days where it's like, "Everyone eat your lunch nice and quickly because we've got a fun activity for you." Well, I had to first go off to find the member of staff that gives up the medication. That would always take quite a long time, eventually be given the medication, then have to go back to the lunchroom to eat my lunch. This meant I always finished my lunch after everyone else. And this is due to the fact my dose of medication can't be given in one go. I have to eat tablets spread out slowly through the course of the meal. This meant I had to keep going off to find the member of stuff to be given more medication multiple times throughout the time I was eating, which took up a lot of time. So by the time I finished lunch, everyone else had already finished a long time before me. So whatever fun activity was after lunch, I always arrived at it later than everyone. So I had less time on the fun activity compared to everyone else. So now let's go more to the present day. To be honest, there's still issues around this dose medication in the modern day. So the eighth issue is when I've taken this medication and at a point just after I've taken it, I've been denied food which actually endangers my safety. It'd be something along the lines of, "Hey, you can't eat your food here. This is a nonfood location, but I've just taken three tablets. I have to eat. I cannot not eat at this point. Well, you have to then go outside. But if you go outside, you don't get re-entry back into the venue.

[00:10:10]So, the money you've spent on your ticket has just gone in the bin. And you might be thinking, "What if I wasn't allowed to eat? Why did I take the medication?" Well, in the real world, these situations do turn up. Maybe I didn't realize I wasn't allowed to eat.

[00:10:25]Maybe I saw someone else eating. But these situations do turn up more often than you might think. And the ninth issue I want to talk about is access to water. Because the thing is, if you go into some of these restaurants, often the food is quite a good value, but they then overcharge on the drinks. So I entice you in with good value pizza, but you now have to pay lots of money for the water. I usually carry around a bottle of tap water with me, which I have to drink the tap water to take my medication. In the UK, I dare any restaurant to try and tell me I can't drink my bottle of tap water cuz just imagine the lawsuit coming their way.

[00:11:02]And it hasn't actually happened in the UK, but abroad it has happened. Oi, you can't be drinking your own drinks in here. You have to buy our drinks. IT' BE LIKE €5 for a bottle of water. Well, I shouldn't have to pay at €5 because someone without my health condition could just eat a pizza without drinking any water, walk outside, then wash their food down drinking a bottle of water afterwards. I can't do that cuz I have to take the tablets before and during I eat, but not after I eat. So, I have to drink water right there and then. This ultimately means I get kicked out of the restaurant and have to eat my pizza outside in the rain just because I have to take a medication and don't want to buy their overpriced drinks. And finally, the 10th issue is a fact everyone always asks me about my medication. And I'm not saying that to criticize people. It's a good thing people are curious. I have no issues with people wondering why I have to take tablets. That's perfectly fine. It's just a bit frustrating after a 100th person has asked me the exact same question. Like it does feel like I'm repeating myself having to explain it to people. And then you get the healthy nutters. The people say things like, "Oh, that's a lot of medication you're taking. Surely that can't be good for you. Why don't you take his natural herb instead and all your problems will be cured?" Well, no. My medication is an enzyme. That herb is not an enzyme, so it's not going to [ __ ] work, you thicko. But anyway, the point I'm trying to make is something as simple as a variable dose medication, which is something that shouldn't be complicated, yet it causes so many problems. So then, that is the van over. Let's now move on to the second half of the video. Now, in this part of the video, I'm going to talk through pretty much my entire medical history because hey, who doesn't love some juicy medical history of someone with a severe health condition.

[00:13:06]Anyway, if you're interested in cystic fibrosis and want to know what daily life is like of someone with this condition, this pretty much explains what it's like. I'm going to go through the good, the bad, the complications, and the diagnosis. Lester off back when I was zero years old, back when I was born. And when I was born, I did not get diagnosed. Cuz unlike the modern day where every baby is tested for cystic fibrosis, back then things were done on like flowcharts and tick sheets. Is your baby coughing? Well, no. I was not coughing. So therefore, I was not diagnosed with cystic fibrosis. Even though I was eating a lot of food because I was not digesting it, I was not taking enzyme tablets back then. So, I was always hungry. When I was 3 years old, I was eating more food each day than my parents were. A three-year-old child was eating more than an adult.

[00:14:10]Surely, someone should have spotted that something was not right, but they didn't. I was not seeing any doctors because I wasn't diagnosed. Only the child birth care person was coming around who told my parents they were feeding me too much, which was very bad advice. The problems only showed up when I got dehydrated and was sent to hospital. People with cystic fibrosis lose salt through their sweat. In fact, back before modernday diagnosis, one of the ways of telling if someone has cystic fibrosis is getting their parents to lick their child and seeing if the child tastes salty. This shows you how much salt pure CF will lose. If you get low on salt, you stop feeling thirsty when you need to drink. If you don't feel thirsty, then you don't drink, which then means you become dehydrated, which is what happened to me. So, I went to hospital and that's when people start to realize something isn't right with this child. But it was not until later on when I was finally diagnosed. And that's because of the amount of food I was eating and not digesting. A three-year-old child's body is not designed to eat as much food as an adult and then not digest the food and it to all come out as a big splatty poo. That is far far turning into poo going through that child. And that amount of poo I was doing eventually led to my intestines becoming so sore and stretched that my intestine fell out of my bottom. And I can actually remember that because I've actually got earlier memories from what a lot of people do. I can actually remember things that happened when I was 2 years old. But I can actually remember all of these medical things very clearly happening. I got rushed to hospital and the doctors had to ultimately put my intestine back into place. But that is when I was diagnosed. I finally realized there is something not right with this child and they worked it out as cystic fibrosis.

[00:16:02]After that most of the problems then got fixed. I was put on to having salt tablets. So the loss of salt was being corrected. I was then put onto enzyme tablets. So I was digesting the food and I was also given physio because people with cystic fibrosis get a lot of mucus in their lungs which is the main problem with cystic fibrosis is the mucus. The reason why people have to eat the enzyme tablets is because they can't produce their enzymes properly because the tube from the pancreas to the intestine is also blocked with mucus. So, a very small difference in the body of having more mucus than a normal person causes a lot of different add-on effects. Now, with the mucus in my lungs, that was cleared by physio. I'd lie on a cushion and my parents would then hit me on the back and make me cough up all the stuff in my lungs. And it worked well.

[00:17:02]For the next few years, not that much happened. Occasionally, my poo went really splatty when I didn't have enough enzymes. A couple times, I got completely blocked up and constipated where I'd been given too many. But over the years, the correct dose was adjusted for the different food types I was eating until eventually it all sort of worked out. So then moving on in my medical history, the next notable thing was around when I was 10 years old. Now I talked about how I was getting mucus removed from my lungs. Parents had to whack me on the back so I'd cough up all that mucus. That worked quite well. But that changed not because of me, but because of some other child in the UK had an issue where they were puking up stomach acid. And that stomach acid had left them with acid burns in their throat. And all of a sudden, the doctors changed their opinion. This is dangerous. You must now stop patting your child on the back to make them cough up stuff. We've now got another method instead. And that method was the PEP system, which was utterly useless.

[00:18:03]It was literally just a thing you breathe through that restricts your airways. It just puts pressure when you're breathing. It'd be like a little dial and you'd have to breathe to the right pressure. You'd have to breathe just to a certain amount. So, not too much, not too little. That did not make me cough up properly. Unlike the whacking me on the back, which worked perfectly, this PEP system wasn't making me cough up. I got a lot more chest infections after I switched to it. To be honest, I got really frustrated with it.

[00:18:27]I didn't like doing it. I had to concentrate to do it. Unlike when I was being whacked on the back where I just watch TV and let my parents get on with it, I now had to concentrate on this thing which wasn't working. At a time, I felt like I was under so much pressure to have to do this to keep me healthy.

[00:18:43]Without going into details, it did end up turning into a rather stressful time.

[00:18:48]Sitting up nice and tall, elbows supported on the table, take a breath in through your pep and blow out for about 3 to 4 seconds, keeping the blue toggle between the two lines or at a pressure of 10 to 20 cm of water pressure. In 1 1,00 2 100,000 down and in 1,00 2,00 3,00 4 100 down. After performing 10 to 15 repetitions, take the pep out of your mouth and pick up the cylinder piece and a tissue to perform some huffing.

[00:19:23]Now, the next thing worth talking about was when I was 11 years old, when I first got sudamonus. So, let's now talk about the different bacterias that can infect people's lungs with cystic fibrosis. Cuz people with cystic fibrosis have more mucus in their lungs, they get bacteria infect that mucus.

[00:19:44]Bacteria which is normally innocent like stafllocus which is the one I mainly had. Stafllocus is everywhere. You probably have it in your lungs. It doesn't affect you. You probably have it on your hands. You probably have it on your face. It's everywhere. But in the lungs of someone with cystic fibrosis, it breathes and creates an infection.

[00:20:05]The issue with that is you then are given antibiotics usually starting with flu clockic that kills off 99% of that staflloccus but a little bit of it always comes back after repeating having an antibiotic a few times is now become resistant cuz the bit of the stafllocus that grows back is the bit with a genetic mutation of resistance. So every time you kill it off with an antibiotic, it will come back, but it will come back with a mutation to then resist the antibiotic. So let's think of it this way. Let's say you have a rat infestation. There's loads of rats everywhere. So you put down poison to kill the rats. You kill most of the rats, but there's a couple of survivors.

[00:20:50]Those survivors have a slight genetic mutation to survive the poison. Their babies then carry that mutation. That means for the second round of poisoning the rats in the future, it will be less effective. Then the survivors of that second poisoning will be the ones with an even better mutation to survive the poison. They pass that on to their babies and the whole rat population is now resistant to the poison. So you have to find a different type of poison.

[00:21:14]Well, it's exactly the same with cystic fibrosis and bacteria. Once you've killed the stafllockus with fluoxicillin a few times, it becomes resistant. So you then have to move on to amenting until it's resistant. Then you move on to cipleoxin. Then you move on to clifformin. Then colomycin. And at that point things have got a bit more serious cuz colomyin is not a tablet you take.

[00:21:37]It is a nebulizer. It is a medication that gets turned into steam by a nebulizer and then you breathe that in.

[00:21:43]That's a lot more time consuming than taking a tablet. Plus you have to wash up the whole thing afterwards. So that also adds on a lot of time. But you can see from the fact you're having to use this bit of equipment to take the medication. But this is now a lot more serious than just taking a tablet. Then the strongest of all tobracin. But there is a finite limit of different types of antibiotic. Once you've run out of all of those and the bacteria is resistant to every single one, you are screwed.

[00:22:12]Now stafllocus isn't too much of an issue. I have chronic stafloccus. That means a stafllocus I have can never be fully removed. It can be suppressed.

[00:22:22]It's never going to be completely gone.

[00:22:24]It's too far rooted infected into my lungs. That was a bit of an issue, but not too much. But the danger was sudamonus. Now, sudamonus is a much nastier bacteria. But I shouldn't say nasty because it does a good job in what it's meant to do. Sudamonus turns poo into mud. It's one of the bacteras that decomposes human waste. If those bacteria didn't exist, the world would be full of poo. Just imagine London covered in [ __ ] The only reason why London is not covered in [ __ ] is because of bacteria that break down the [ __ ] and turn it back to mud again. That's what makes the world function. The problem is this bacteria was just an innocent bacteria doing a good job. But when it enters my lungs, it infects my lungs. it goes wrong because of the fact there's mucus in my lungs. And the same process happens. I get put on an antibiotic. It kills off 99% and then it comes back.

[00:23:27]And that is what kills people with cystic fibrosis. Cuz everything about this condition so far seems fairly tame.

[00:23:34]That is the infection slowly gets worse and worse and more resistant. And once you've run out of antibiotics, you got nothing left to kill the bacteria. Then it's just going to take over your lungs to a point where you can't breathe and you die. That's what kills people. Now, when I was 11 years old at my school, yet again, it's school causing all the [ __ ] problems. There was a massive sewage leak. People been chucking things down the toilet like I always do. Sewage leaked all over the school, but we had to walk through it. We were forced to walk through his sewage. I got sewage all over me. Hey, a bit of sewage won't harm you. Well, it does when you got cystic fibrosis. I got sudamonus. That's when I first had to have IVs. So, that's antibiotics. that's injected rather than given as a tablet. So many things went wrong when I first was given IVs. The amount of mistakes made genuinely was scary. Firstly, I was put in a regular children's ward rather than a specialist ward. And the nurses didn't really know what they were doing. To make things more complicated, I was completely healthy. The doctors were so scared of the fact I had sudonus. They wanted me treated immediately even though I was not ill. So, I was in hospital in a ward full of really ill children. Except I was not ill. I was bouncy. I was really hype. I was jumping around. But what's really stressful as well as that is a number of things done wrong. Firstly, the veins on my hands today look absolutely terrible. That's because they were putting a line. And a line is a tube that goes into your vein into my hand. Those should not be put in for any longer than like an hour or two. If you're going to put in a line, it has to go into a bigger vein. Veins in your hand are not suitable for having a line in for two weeks. 2 weeks is too long.

[00:25:24]It damages the vein. But hey, they still did it. So today, I've got terrible veins on my hands. Also, the nurses didn't know how to give the IV antibiotics. They're used to just pushing them through on the syringe.

[00:25:38]Tobraramyin, the antibiotic I was on, was not safe to be pushed through. It had to be given over an hour on a drip.

[00:25:46]But because the nurses didn't know that, they tried to push it through within 10 seconds, which made me faint. And after that bad experience, that ultimately traumatized me quite a bit about hospitals. After that, I'd every year or so because at that point, I'd now had sudamonus for the first time. That sudamonus is never fully got rid of. So it kept coming back. So that is the start of deterioration of the lungs for someone with cystic fibrosis. One of the most important things with people with cystic fibrosis is you cannot meet another person with cystic fibrosis because you're going to share bacteria with resistance cuz each person's bacteria is effectively unique to them.

[00:26:29]You are creating subspecies. Every time you kill the bacteria, it comes back with a mutation. That means in my lungs, my bacteria are a subspecies of sudamonus and staflloccus. If I was to go and cough up a load of mucus and I spat it onto your face, nothing would happen to you. Doesn't affect you. It's mutated to survive in my lungs and be resistant to the medications I'm given.

[00:26:56]It can't survive in your lungs. But let's say I was to spit it onto someone else with cystic fibrosis. Well, then I've just infected them with some very resistant bacteria. If someone with sudamonus, which has become resistant to everything, was to infect me with that.

[00:27:13]That's years I could manage with slow resistance buildup. It's taken away.

[00:27:17]I've suddenly given the most resistant version. Which is why when I go to hospital in the clinics, the time you're given to go in is around what resistance you have. So the people with the least resistance go in in the morning. Then in early afternoon are people with medium resistance and in late afternoon it's the people with the most resistance and that's to stop the spread of the most resistance from getting into the people with the less resistance. So that's how tight the infection control is. In fact, every time I go into clinic, I'm immediately taken out of the main room where everyone sits and put straight into an isolation room. I am that infectious I have to be kept away from everyone else. So then another thing I'd like to talk about is how the quality of my treatment and care in hospital improved massively over the years. So going back to when I was a child, the very first time I had IVs in Medway Hospital children's ward, the quality of care was not good there. The nurses did not know what they were doing because they were not specialists in the subjects and so many mistakes were made.

[00:28:20]But over the years due to campaigning by the cystic fibrosis trust charity things got a lot better. On the third time I went in for IVs rather than going to bedway hospital I was sent to King's College Hospital in London which is a large major hospital which much better facilities. Initially I sent into the Tower Wing where there was a dedicated cystic fibrosis unit meaning all of the staff there were familiar with cystic fibrosis. So the quality of care improved massively. Every patient had a separate room which was a big improvement but everyone had to share a bathroom and the cystic fibrosis trust charity was not happy of that and due to their campaigning the cystic fibrosis unit got moved to the modern Jubilee Bing which is a state-of-the-art modern clean part of the hostel. I was actually given a private room with an on suite bathroom. It was like I was in a private hospital. It was like I was in a luxury hotel and was being treated like I was a paying private patient even though I was just going in for free. The level of service did get better over time as they were learning from their previous mistakes. For example, using ultrasound to put the IV line into a deep vein in my upper arm where normally the IV line goes in at a small vein that's visible near the surface of the skin. But those small veins irritate easily. With ultrasound, you put the ivy line straight into a deep vein so it never has to go through the shallow one, meaning veins don't stretch and damage.

[00:29:44]But what really improved things was later on they introduced IVs at home because they had large numbers of patients needing IVs. It cost a lot of money to keep people in hospital. Plus, the people with cystic fibrosis do not like being in hospital. So the logical way forwards was to allow people to do IVs themselves from the comfort of their own home. Especially in situations where it wasn't like a major hospital visit, but more like a routine bit of treatment that IVs had become. You might as well just do at home. You don't need to be in hospital to do that. Another issue worth talking about with cystic fibrosis is what happened when I was 18 years old.

[00:30:19]The handover from pediatric doctors to adult doctors. Why? Why is that even a thing? Cystic fibrosis is pretty much the same if you're a child or an adult.

[00:30:32]So why have one set of doctors for the children and one set of doctors for the adults? It is tradition. A tradition that is harmful because when I got changed to the adult doctor's team for no fault of them, but my level of care went downhill. And that's simply because they didn't know me. The children's team had been looking after me from when I was 3 years old to 18. They knew everything about me and gave me the best treatment. The adult team for no fault of their own didn't know anything about me. So they weren't able to give me as good treatment. And that is a serious issue for people with cystic fibrosis.

[00:31:08]It's well known that people deteriorate when they hand over from the child's team to the adults team. I don't feel there should be a handover. There should be one cystic fibrosis team for all ages. The handover is unnecessary.

[00:31:21]Now the next thing worth talking about is when Orcami came out. Orcami is medication which is almost a cure but not quite a cure for cystic fibrosis. It only cures the lung issues not the intestine issues. So I still have to take all of the medication for eating food back in the days of David Cameron.

[00:31:40]What a [ __ ] [ __ ] Refused to fund it.

[00:31:43]It was around £100,000 per patient per year. That is not the cost of the tablets. The tablets themselves just cost pennies. This was the cost of the research which had to be funded to make that money of the investors ad research into this new medication. As David Cameron refused, I never got put on or cami. It was only when the second generation of Okami came out many years later that eventually the funding came through. That's because Romania were now giving their cystic fibrosis patients or cami. You know how poor Romania is, yet they managed to fund or can be for CF and the UK wasn't. That was so politically embarrassing for the government. That's why they eventually funded it. And to be completely honest, I only really just funded that in time cuz on that last time I went into hospital before I started or can be, I was very ill. I'd had IVs quite a few times by then and they were getting less effective. It was only a relatively short amount of time from my previous set of IVs to that last set. And I felt so ill. I had so much mucus in my lungs, I could barely breathe. I was coughing up mucus all the time. And I've lost the photo of it, but I've got a really disgusting photo where my entire base of my bathtub was covered in mucus from my lungs from just one day's worth of coughing. I'd filled the entire floor of the bathtub entirely with mucus cuz I was coughing up so so much. And now at that point, the IV antibiotics had got a bit ineffective. So to be completely honest, this is quite scary to say this, but I think all cami only just came out in time for me. If there had been any further delays, well, let's not go there. Now one good thing of the deal the UK government managed to get is when they managed to fund second or cami they had the deal that a could get third generation or cami for free. So I was only on second generation for about a year then third generation came out. So once I'd started the third generation of Okami which is Crio and Calco combined at that point all my lung symptoms disappeared. It was almost an overnight change. I went from coughing loads and not only that, I was also having these weird symptoms of hot and coldness. All of a sudden, I'd feel freezing cold and I'd try and heat myself up. Then I'd overheat and I was getting out constantly and those symptoms had got very bad. Now, when I started second generational camping, it went away a bit, but it was still there. But when I started calf trio, all of those lung symptoms went away pretty much overnight. I don't even know what to think about that. thinking about how ill I was to all of a sudden not being ill.

[00:34:27]It's just so strange to think of it like that because I went from having this major health condition to not having it.

[00:34:34]Well, at least in regard to my lungs, I'd stopped having the health condition overnight. It was like I'd suddenly become a normal person. It was like I had freedom. I don't even know what to say about that. It's just weird thinking back to how bad my cystic fibrosis was until overnight it went away. I don't even know what to think of that. So all of the lung conditions of cystic fibrosis were cured but only the lung conditions. Castrio does not cure any of the other things. Also it doesn't put back damage which your lungs have already sustained from before you started taking it. For me what that means is I have slightly lower oxygen levels than a regular person. So let's say I was exploring an abandoned building and then security comes and me and a friend have to run away. Initially both me and my friend can both run at the same speed. run as fast as I can away from security, but after about 20 seconds, I'll run out of oxygen cuz my lungs are not able to replenish my oxygen as quick as a regular person's lungs. So, I'll be forced to have to slow down at point. So, I'll be the one who gets caught by security. Luckily, that exact situation's not happened yet, but I reckon that probably will happen at some point. But the calf trio only cures the lung symptoms, lest they'll talk about the symptoms which are still there, the things that it does not improve. It does not cure the intestine symptoms. So all of the having to take enzymes to eat my food, that's all stays the same. I still have to do that. Also, it doesn't cure the tiredness. One thing which you don't see from my YouTube channel is the amount of tiredness I get. Cuz well, everyone on social media always uploads the best content that looks great. So if you look at my YouTube channel, you'll see, oh, I'm off on another cheap little adventure somewhere. All looks really wonderful.

[00:36:09]What you don't see is when I'll get back from most adventures. I often have to stay in my home, often lying in bed for most of the day for about 5 days afterwards. So even though I can go out and do all the adventures, after I've done them, I get very exhausted, which are now the most major symptom I have of cystic fibrosis, those have not gone away. This brings me on to the last and final issue I need to talk about with cystic fibrosis, and that is diabetes.

[00:36:33]Now, let's go all the way back in time to when I was 3 years old. My parents were told, "Fatten up your child. Your child can't digest their food very well.

[00:36:42]You need to give them as much as you can to fatten them up. Make your child super fat. The fatter the better. So, my parents did exactly what they were told.

[00:36:53]Loads of highfat food in the form of chocolate bars. Now, this is back when I didn't realize at Cabri's chocolate bars are 50% sugar. So, loads of fat. Just what the doctor wanted. lovely things to fatten me up, but also gave me diabetes at the exact same [ __ ] time. So, yes, I now have diabetes cuz I was given loads and loads of sugar. I have overdosed on sugar pretty much my entire life. So, from when I was 3 years old up to the present day, at the time when I was 3 years old, the doctors didn't know there was a link between cystic fibrosis and diabetes. That's because people were not living long enough back then.

[00:37:36]Because of the lack of treatments, people's lungs were getting over infected and completely resistant by the time they were getting to like 30 years old, which is why there was a life expectancy of 30 years old for people with cystic fibrosis. So back then, I think the attitude was something along the lines of keep your child really fat.

[00:37:52]We don't care. We're giving them loads of sugar. They're not going to live long enough to get diabetes anyway. That changed when all cami came out because ultimately at a minute, I've got no infection in my lungs. I don't have any lung symptoms apart from slight lack of oxygen. So ultimately the diabetes has now come through from all that sugar I was eating along with the fact that TF also causes diabetes from the pancreas also being blocked up with mucus. So it's not just enzymes I'm lacking. It's also insulin I'm lacking. So now is the big challenge of changing my diet.

[00:38:24]Getting rid of all that sugar I was eating. Cuz let's face it, I feel like I'm a [ __ ] drug addict right now. eat so so much sugar because that's all I've ever known. All my life I ate tons of sugar and now I'm having to find alternatives to get rid of it. And only when you try and get rid of sugar from your diet do you realize how much it has been put into absolutely everything you can think of in the supermarket. So let's now talk about reducing sugar in food, [ __ ] supermarkets and the [ __ ] consumer model of how food is sold. There's sugar in everything and I'm now having to cut out almost all sugar and all refined or processed carbohydrate. Those two things don't sound that major. And it's only when I now have to cut out pretty much all sugar and refined or processed carbs from my diet, you suddenly realize that is in [ __ ] everything. And this is because of capitalism. How capitalism works is that the company makes the food the most sellable that they can. They want to sell as much of it as possible.

[00:39:25]Capitalism has no room for companies doing the right thing to keep people healthy. It is not. That goes against the system. All capitalism cares about is selling you stuff. Which is why you need government regulation to stop capitalism from making bad decisions which profits the companies against the health of the people. But the government is not regulating the food industry properly which is why food is full of sugar and processed carbs. So let's take this example. Let's talk about oats. An O is a grain. It's a carbohydrate. The farmer grows the oats. Those get sold to the food manufacturing company that turns it into products, sells it to the supermarket that sells it to the consumer. Over time, new breeds of oat come along, usually by selective breeding. The food manufacturers put the new breed of oat into their food, and they find it sells better. More people buy the product. So, the food manufacturer wants to make more of it.

[00:40:17]So, then the farmers are then incentivized to grow this new, better breed of oat. Now, so far that sounds great. The problem is these new tastier breeds of oat have a higher glycemic index. They turn to sugar faster. So, that entire cycle means the glycemic index of the oat increases over time as the consumers prefer to buy products with a better tasting oats. Then the food manufacturer then breeds even higher glycemic index oats and the cycle repeats making the food higher and higher glycemic index which is not good for the consumer. The food companies do not care about the health of their consumers. They couldn't give a [ __ ] about it. All they care is about selling products. But it gets even worse than that. As the food companies also process the oats, they refine them. They strip the oats of its brand, which makes the glycemic index even higher. All products with oats in have refined oats unless it specifically says whole grain. And to be honest, most of the oat bars and stuff you see is all refined oats. It is not good. Then what makes it even worse is the food companies put sugar in oat products. Let's say a granola. It says granola on it. It's supposed to be healthy. The entire point of a granola as you eat the oats, which is supposed to release the sugar slowly throughout the day. as well as the selective breeding, the higher glycemic index and the refining and stripping of a brand.

[00:41:44]As well as all of that, they also add sugar to the cereal. All it is now is sugar spite food. It's not even good for you anymore. The problem is the government doesn't regulate the industry. This doesn't apply just oats.

[00:41:58]This applies to the entire industry. The government is incompetent. But there is a positive that's happening in the modern day and that is the health foods movement. Some people have got fed up of supermarkets and food manufacturers not making healthy products. And there has been a demand from some consumers to have better products. And by the way, don't confuse the term health foods with the other meaning of health foods cuz often people say health food when they mean low fat. But low-fat foods like a low-fat cheese is not healthy cuz it's been processed through the fat. And there's nothing wrong with fat as long as it's natural fat. There's nothing wrong with it. You shouldn't be wanting to strip out the fats in ultrarocessed ways. When I'm talking about health foods, I'm talking about actual proper health foods, which are nothing to do with stripping out fat as a different subject altogether. I'm talking about foods that are healthy because the glycemic index is lower, such as in overpriced health shops like Holland and Barrett, which are now selling foods which are actually good for our condition, but they're [ __ ] expensive. As for your typical smaller scale supermarket like a convenience store, most of the food sold in these smaller convenience store shops, I cannot eat, especially in the snack section. While an ordinary person will be like, I'm going to go into the convenience store and buy a snack. I can't do that in these smaller shops.

[00:43:10]The entire snack section is all ultrarocessed food with refined and processed carbs and will spike my blood sugar. What I find very frustrating is that when I'm out and about, it's actually quite hard for me to get food cuz all of the ordinary foods that people eat, like a bag of crisps, I can't eat anymore because of the glycemic index. So, I really do struggle to find foods to eat. Anyway, that is the end of the video.