Tasteless Taste of Dublin

For the past few years Yas and I have wanted to go to Taste of Dublin. This year I was home during the time it was on and we happened to get free tickets. Jammy!

To buy the food you need to have tokens, they call it Florents or something along those lines. We asked how much they would recommend us buying. €40 between us they said. So we bough €50. Id say within 20 minutes that €50 was gone. Was it spent on good food? No. Our lobster roll, which was more like a glorified dinner roll with a tasteless amount of lobster. That cost €9!!!! The oysters were nice in fairness. Everything else was mediocre and the price didn't reflect the quality or the quantity. I don't mind paying money for something that will blow my taste buds away. If the lobster roll was €20 and tasted unreal then I see that as money well spent. The only memory I have of this was the fact it cost €9. 

€50 spent and we didn't even have a drink. We had to spend another €20 just to get a beer and a cocktail. 

So €70 down and we were still hungry and thirsty. We decided to leave and get a proper lunch. Yas wanted to try Balfes (www.balfes.ie). I never heard of it and because it was attached to the Westbury, i just had this idea that it will be overpriced mediocre food. We had tuna tartare and oysters for mains, which was lovely. The bread was a bit meh. I had a pink pepper grilled pineapple with vanilla ice cream and Yas got a parmesan cheese cake. I was surprised that it was nice, although I think it would be better as a starter. Yas loved it (sure thats all that matters!!!!). 

We were still hungry when we got home. Savages! So I rustled up something quick and started season 4 of Orange is the New Black. You can't sit through the opening credits of O.I.T.N.B without doing a stupid dance. It doesn't feel right! 

I woke up today and had a definite answer to whether I should go away to the Olympics and be away for the rest of the summer. I missed having Sundays with Yas and continue on our #IrishFoodQuest! I have been trying to decide what to do. I have had enough of living out of a suitcase and staying in some very questionable accommodation
(and thats not me being a diva) over the last number of years. The picture on the left isn't the worst picture. Dirty water coming up through a hole in the ground and live wires hanging from the shower are examples.
 I am going to stay home and spend time with my family and Yas. There is no hidden meaning behind this. I would just rather watch the Olympics on the couch with a nice pot of tea and maybe a raspberry swill roll. How can you beat that??!!

#BeatCF

No Orkambi, So I Run Up Mountains

Orkambi was denied in Ireland. So I decided to run up the Dublin Mountains. Not sure what the two have in common but sure it made sense at the time. 

#BeatCF

Take Time To Digest

No specific animal is better then another. Like no human race is better then another.

Its coming up to the ever popular Yulin Dog Eating Festival. While the vast majority of you might find eating dog hard to swallow. But ask yourself what is the difference between eating a dog or eating a lamb?
I have asked this question to many people and the response is "you don't bring lamb into your living room and pet it". Maybe not a lamb, but in India they prize cows as being Holy. This a valid enough answer. However, if it wasn't for the Egyptians we wouldn't have domesticated dogs. If you think of it, domesticating a dog is purely only for the selfish needs of humans. Should dogs be allowed roam free instead of giving them treats to roll over or smack them on the nose for going for a pee in your kitchen?

Taking away the fact that humans made dogs domesticated and people love them because they are small enough to live with humans in a house. Again, ask yourself what is the difference between one animal meat to another animal meat? Im going out on a limb here and  the answer is absolutely nothing.
When you see the millions of cows slaughtered each year for human consumption. The millions of lambs slaughtered for human consumption. The millions or even billions of chickens kept in awful conditions and slaughtered for human consumption. How is that any different to the killing of any other animal? It's not. Just because you see them as domesticated pets, on the other side of the world they are seen as animal protein. If there was a steak festival nothing would be said about it. A hamburger festival. Again nothing would be said.

Before you say "You must be a vegan". No I am not. I tried it and it felt horrible. What I am is a weekday vegetarian. Not because I think animal killing is cruel (which is kind of is seen as we don't actually need animal flesh protein to live), but because I feel healthier doing so. Plus, if you look at the amount of carbon waste derived from the feeding, killing, transportation of animals for human consumption is astronomical. If everyone ate like a weekday vegetarian it would have a bigger impact on global warming then if everyone changed to a hybrid car.

Anyway, each country has their own delicacy. For example, Iceland eat puffin. An extremely cute little penguin type of a bird that looks like the creators of Happy Feet took its idea from. They eat puffin as a way of culling the vast population of puffin in Iceland. You never hear about that do you?

Balut is a developing duck embryo that is boiled while its still alive, cooked to death and then eaten from its shell. You never hear anything about this. 

You might have heard of Foie Gras. Maybe not. Fear not, I will explain! Foie Gras translates to Fatty Liver from French. Why? Because either the duck or geese is force fed grains with extra fat by a long metal pipe that is stuffed down its neck until the liver reaches nearly 6 times the normal size. Basically giving the bird Cirrhosis of the liver. This picture isn't photoshopped. This is actually how the process is carried out. 

Wait, you only have to read two more paragraphs on why every animal is equal and all of a sudden you have a heart about how animals are killed. 

This next one involves chickens. Instead of just killing a chicken by either breaking its neck or sending an electrical current through its body, the "chef" opens a live chicken, cuts out the intestines and stuffs it with herbs and spices. Sews the chicken back up and then wind blasts the chickens while they hang upside down until they are dead.

Lastly, but not as important as the other above. Fresh Donkey. This involves cutting the donkey open and taking parts of its flesh off WHILE ITS STILL ALIVE. If thats not enough, boiling water is poured over the donkey to cook part of the meat WHILE THE DONKEY IS STILL ALIVE. This is repeated until there is no donkey left and the donkey presumably dies of the amount of pain it has been put through. I won't post a picture of this because it doesn't really look right and i presume you get the gist of it so instead, i have decided to show you a lovely cute picture of Eeyore. 

My post isn't to intend to shock you into being a vegetarian. I just want to illustrate that what is normal for the spider is chaos for the fly. Meaning, just because you see it as a pet, others see it as a source of protein that they might not be able to source. Of course times have changed and you can source different animals across the globe. But traditions won't die just like the tradition of drinking in Ireland won't change but it still causes so much problems psychologically and physiologically. 

Personally I don't see a difference in any animal being killed for human consumption. It's not exactly peaceful no matter how you view it. 

Seeing A New Decade

Turning 30 seems like it should be a big deal. Turning 30 and having CF should be an even bigger deal. I would be lying if I said it didn't hit me at all. A few months leading up to my 30th i realised that I was going to be 20 years older then what my parent were told. Even that amount of years between when I should have died until now. 20 years is a long time to live with CF. 

I have always had big goals. In fact, I am never really satisfied with what I have set out to do. This is something I need to change. Appreciating the big and the small achievements in my life. I do think that a lot of highly motivated individuals don't really appreciate what they have done. I don't know when enough is enough. I don't even know fully what my goals are. I don't really set goals per say. I just have ambitions that I want to achieve. I think an ambition and a goal is different. A goal is something you want. An ambition is something you have a burning desire for. As if you were born with this fire inside your belly that needs to be followed. I have ambitions rather then goals. Of course, I have goals. One of which was to run a sub 40 for 10km. I set this time a month before the race. A month before the race I was coughing up a lot of blood. A month before that I had my first seizure in 3 years. I lost a lot of weight. I dropped from 60kg to 53kg in about 3 weeks. I was in Kenya at the time and its very hard to keep weight on over there. Not because the food is bad. Its because the food is very healthy and you are living at 2500m above sea level. You burn more calories doing nothing. So I didn't really have ideal preparations for the race. As you can see in the video, I ran under 40minutes and felt quite good doing so. I was more happy I bet Spiderman!!!

Anyway, 36 is the average life expectancy in Ireland for CF. Although, 27 is the average age of death. Not sure what the difference is. I've passed one of them, the next is 36. I know Ireland has the lowest life expectancy in the world for CF. I think the highest is Sweden, which is 50(ish). I suppose thats a goal. Its not an ambition as I only realised a few years ago that I really cared about age and CF. 

Everyone says turning 30 is ok. It's like they are trying to reassure me that its ok getting old. I actually look forward to turning a new age. Especially turning a new decade. It means I'm a year older then what I should have been. Im also another year without going into hospital and another year never being on IVs. I am not sure how I will be when/if that day comes. I try not to think about it but it does scare me a little knowing that it could happen and the idea of going into hospital with that needle going into my arm gives me a shiver. If you have CF and are reading this then don't take offence to this. I have just never experienced it and its something I have worked obsessively hard to not experience. 

I will leave you with that. I had a great birthday and heres to many more!!! 

#BeatCF

Bon Appetite Review

We went for the 6 Course "Surprise Tasting Menu". There was no surprise it. I'm not surprised it has lost its Michelin Star. The menu is dated and lacked the taste that the reputation of the restaurant accredited.

The amuse bouche was the nicest thing about the menu and it went south after that. However, the amuse bouche was counted as 1 of the 6 courses. That was a bit cheeky.

Second course was a goats cheese, beetroot, and yellow pepper puree. This was nice, but I'm not sure why it was served on a slate.

Third course was by far the worst of the night and one of the worst dishes I've had in a restaurant in a while. I didn't finish it. It would have been expected on a menu for brunch about 2-3 years ago. A huge bit of black pudding which wasn't anything special, on a bed of mushy peas, and a hard poached egg. How can a good restaurant serve a hard poached egg? The peas lacked creation. Not even a bit of chopped up mint thrown in.

Fourth course was mediocre. The beef was cooked well but serving prawns with a red wine jus, mash potatoes, and some sort of black pepper sauce just didn't make sense and didn't complement one another at all. Again, the yellow pepper puree appeared on the dish.

Fifth course was a deconstructed cheese cake. I don't understand deconstructed dishes. Just serve it the way it was meant to be. The cream cheese tasted similar to the goats cheese from the second course but with a bit of sugar to make it more of a dessert. Digestive biscuits crumbled up was a bit hard to keep on the slate.

Sixth corse was a chocolate and peanut butter brownie with coconut ice cream, and again a few crumbled up digestive biscuits. Nothing either amazing or bad about this. It was just ok.

While the photos look good, they don't deserve to be in a restaurant with this reputation. I would have expected it to be served in your local family restaurant.

Anyway, the company of my girlfriend made the night. The food was just a happy go lucky night out. But maybe I just had too high of an expectation.

Week 1 and 2 Living Like A Kenyan

I wasn’t sure if it was the long travel or the culture shock. I am going to say the long travel as being here is getting gradually better. 

I flew from Dublin to Addis Ababa (Ethiopia), Addis to Nairobi (Kenya) and a 6 hour layover in a tent of a terminal. No lie. It was actually a tent. After 6 hours I had a 50 minute flight to Eldoret (Kenya) and a 45 minute drive to Iten. Iten is this small town full of Olympic Champions with a lot of Mzungo athletes. Mzungos are white men. Kids shout at me “Mzungo” as if I am the first white person they have ever seen. The little kids come over to me saying Mzungo and want to touch me. Touch my hands and hairs on my legs. I find it funny. But I can imagine back at home if i was to shout “black man” out the window of my car it would be a lot different. 

It is my first full day here in Kenya and it has been a weird one. With all my travels over the world I didn’t think it would have been such a culture shock. Even when I was in Ethiopia I didn’t find it that bad. It’s not bad, its just different. Electricity shortages, no wifi, and there is only 1 proper road thru Iten. The rest are dirt roads. Perfect for running. Anything less then a 4x4 would struggle. Basically everything I mentioned are first world problems, especially no WIFI. 

I went to a fruit market and got small bananas. They cost 30c for a bunch. They are the nicest bananas I’ve ever tasted. So sweet. 

I am living in a compound. A very basic one at that. However, it is full of Olympians and the fastest people in the world. I can see why they are so good at running. All you have to fill your day with is training and recovery. They have no distractions like wifi. The food is perfect. Full of fruit and vegetables that haven’t been coated with a wax to make them sit on the shelves longer and no GMO foods. Everything is just as it should be. 

President Mugabi of Zimbabwe once said he learned corruption from Kenya. I didn’t believe him nor did I believe the Kenyans who told me that the country is corrupt. I still don’t blame the whole country for this but it has opened my eyes. I booked a hotel thru Bookings.com, a reputable website for booking hotels etc. I got confirmation, and it would have cost $2200 for 23 days. This works out to be around 90 a day, even tho it would usually cost 40 day for this hotel. The hotel itself told me that they are booked up but i thought that Bookings.com had booked up a certain amount of rooms that you can buy straight from them. I went up to reception at this hotel which told me they have never heard of this site and that “this site is full on con men”. If I had the option to cancel the room without payment of 2000 then i would have laughed it off. But the hotel said that there is nothing they can do and that the site is just going to take my money. I got onto the site right away which they told me they wouldn’t charge my account and that they will look for somewhere local and no messing about. With my suspicion hat on I would say that the hotel says it has more rooms available on sites such as Bookings, but then because you can’t cancel they take you money and still have someone stay in the room you were made believe you had. Also, i get a price when i buy something but then i say “no, give me the Kenyan price” and the price drops instantly. Anyway, problem solved. Oh and I had to take a shower from a tap. Keeping it 1920s!!

I moved into a new place that is actually liveable. I had my first hot shower in over 10 days. Other then that i was cleaning myself from a tap in the shower. Felt really clean after it!!!

Running up here is good. The ground is perfect. I would compare it to a summers day in Ireland (when its hot) but it rained the night before so that the grass has a bounce to it. Hills on hills in Kenya. You have no choice but to run them. You don’t notice the altitude until you have to run up a hill. Im currently at 2400m above sea level. Its the second highest I’ve been at. Ethiopia was 2600m to 3200m. 

What really annoys me about Kenya is that “this is Africa” when things take too long. I waited 90 minutes for some chicken with potatoes and a salad. It came out as a completely different order. The restaurant isn’t even busy. However, living in Kenya makes you settle yourself down and realise why are you rushing around. Everything is basic so you either have a choice to get annoyed about it or roll with it. I choose the roll with it option because I will get so frustrated if i choose the first option. 

My CF hasn’t been a problem. At the moment I am on Tobi. I was on Cayston before that. I think I’ve lost a good bit of body fat. But this is a natural response from living in a hotter country. Plus the food isn’t high fat, or high animal protein which suits me better. 

Until next week, take a look at my youtube channel (My Youtube) which has some videos up there. It takes about 4 days to upload an 8 minute video so I can’t really upload regularly.

Just Another Statistic

Before I go on in detail, I will explain about this little boy called Finn. This is Finns year so far.

- 27 courses of oral anti biotics
- 11 chest x rays
- 4 courses of IV anti bionics (3 times a day)
- 4 weeks of being on oxygen
- 3 weeks of being on a feed directly into his stomach (to get the required amount of nutrients, vitamins and minerals in per day)
- 38 times of attendance to hospital
- 3 pneumonia
- 2 lung collapses

Below is a link to the Joe Duffy Liveline about the new drug for CF.
Joe Duffy - Orkambi

Now for the stats..
Enda Kenny had a lot of positive words to say about the services for CF.

Here is what he thinks are great services.

In Dublin alone;
•20 CF designated beds in Vincent's with an extra 14 beds that are given to other people if needs be. 
•6 CF designated beds in Beaumont with no extra beds if needs be.
•There is just over 1200 people with CF in Ireland. The most densely populated in the world yet we don't even have enough CF beds for 10% of the population nationwide. 

Furthermore, here is a list of how Orkambi will; 

•reduces hospitalisation by 40%. That alone saves money on the tax payers and the government. 

•It increases weight which reduces the amount of night feeding treatment, and other weight gain supplements that people with CF will have to take. 

• It increases lung function which can help people with CF participate in the real world, getting jobs and contributing to the work of the country. 

Never mind the cost of the drug, it's about saving lives of Ireland's biggest genetic disease. We should be leading the world in treatment and services for CF not waiting on what other countries do.

The life expectancy in Ireland for CF is 36. In Sweden its 50. Only reason for this is due to the healthcare. To further my point, Northern Irelands life expectancy is 40. If it was to do with climate etc then Northern Ireland and Rep of Ireland would have the same age. But we don't. We have 4 years less.

The Government has said we don't have the money to fund Orkambi. The same government is to spend 60 million Euro on changing the speed limits on the m50 - a 45km motorway that acts like a carpark.

Furthermore, Also, it has been announced that the government will increase the grant for Horse Racing Ireland from €54.4 million in 2015 to €59.2 million in 2016. 

But we are told that there isn't enough money to fund a life changing drug to people with CF.

If there is not enough money to fund Orkambi, lets look at how much is spent on treating another condition that is entirely treatable with diet and lifestyle, and a condition that is on a drastic rise which effects the government and the tax payer.

Type 2 Diabetes.
- 10% of the Irish Health Care budget spent on diabetes – €1.35 billion annually. 
- 95% of Diabetes in Ireland have Type 2 Diabetes. 
- But here is the funny thing. Cystic Fibrosis is a condition that can result in CF Related Diabetes (or CFRD).

The government spent some 27 million on postcodes in Ireland. POSTCODES!!!!

If the Minister of Health Leo Varadkar had CF, he would statistical be dead. He is 36.

We know how fast and high he, or Enda Kenny would be jumping if one of their family members had CF. But they don't, and that exactly why us people with CF are just another statistic. 

PEP, Timing & Exercise

Vibrating Vest Vs PEP (Vest Vs PEP Study)

This study wanted to find out which was better in terms of Lung Exacerbation and comparing both the Vest and the PEP. 
Patients using HFCWO (The Vest) experienced their next pulmonary exacerbation after starting the treatment earlier than those using PEP (220 days for PEP vs 115 days for HFCWO which was statistically meaningful)
There was no significant results to show that either PEP or the Vest increased lung function.
WINNER - PEP

Does Timing Matter? (Timing of DNAs Study)

No, not really. There is no strong evidence to indicate one timing regimen is better than another, and individuals should discuss their optimal regime with the specialist CF physiotherapist.

Does Exercise Matter? (Study On Exercise With PwCF)

In short, yes!
The study consisted of 12 subjects (6 male, 6 female) with an average age of 13.3 years. During the study they spent an average of 3 hours per week exercising compared to 50 minutes in 2009. The need for IV antibiotics reduced from an average of 60 days in 2009 to 50 days during the study, along with improvements in exercise performance. Significant improvements in quality of life were also seen. On average, lung function was shown to decline in 2009, but a suggestion of improvement was seen in 2010.
A significant reduction in number of days that IV antibiotics were needed from 60 (56-64) in 2009 to 50(44-56) in 2010, along with an improved modified shuttle test distance 735 verses 943.

I Have A Disability - I am Disabled

Look at the video of Michael McIntyre and skip to 2.46. This video is for everyone who gives       "that look" at a person who parks in a disabled spot.

There has been a lot of talk recently about Disabled Parking, and how not every disability is visual to the onlooker. However, I know for a fact that when people who have CF cough in public and they get a weird look, they get very annoyed and disgruntled. On the other hand, this is our visual "disability" and people will look weirdly. Seen as the word is highly sensitive to being sterile and the risk of contamination of an airborne disease from out coughing. This isn't necessarily true. We just cough because this is our disability and we need to clear mucus. 

So, we can't have it both ways. We can't give out about people looking at us when we show our disease/disability, yet give out when someone gives us a dirty look when we park in a disabled space. The disability of CF isn't as obvious as someone who moves from their car into a wheelchair. 

                                                            

Yes, I have a disability. Meaning I am disabled. In other words, I have CF. I am a person with CF (PwCF). I am a CF person. I am a CF'er. I am a sick person. I am a person who is sick. I am differently abled. I have special needs.

I am using anything that comes to my mind in different ways on how I can convey that I have a condition. Or is "a condition" still a not politically correct? As you can see, it doesn't really matter to me what you call it. I still have it. Trying to powder over the fact that I have CF doesn't get away that it is a fact. The last "label" - I have special needs - might seem a wrong label to use because you think a person with special needs is disabled. You see what I did there? A person who has a mental or has a physical impairment in which it effects them on a daily basis. Yes, this is me. It effects me, but it doesn't stop me. I have special needs in that I have to take special medication, or have a special diet. But you still wouldn't call me "special needs" because I don't have Down Syndrome. I don't even know if Down Syndrome is politically correct anymore??

In the CF world, or maybe I should say "in the world of CF", people have a problem with CF'er, or Cystic, or CF person. People aren't going out of their way to insult you by calling you a Cystic or CF'er. I even get given out to for using CF'er. The politically correct term for us is PwCF.
There is another side to this. Why do we need to be labelled? We don't really, but everyone has a label. CF takes up a huge part of our life, and I think we tell people that we have CF. It kinda comes up in conversation. I think it adds to the awareness of it, and so that people don't get it confused with Multiple Sclerosis. It sounds very similar to Cystic Fibrosis.

I use the title CF'er to show you that a word/label is only a word/label, but it is your interpretation of it that creates the problem. Maybe it is an insecurity about the "label" you are being called. I do not give one care if a person says i have a disability, or i have special needs, or that I'm a Cystic. The fact is I have CF and whichever way is easiest to explain or say to someone that I have CF the better.
I can't speak for everyone with CF seen as I get in trouble for using CF'er etc etc. These are my thoughts, and I want to show people that not everyone with something wrong with them has a hang up over labels or words.

I don't have a disabled parking permit. Simply because I don't feel I need to park closer to the shops. There are others who actually need to be closer to the shops, or need extra space to get out of the car. I do have a problem with the logo. It shows a person in a wheelchair. I suppose it is misleading, and showing that this is the only disability out there. I don't know what else I would use. Maybe a D.P (Disabled Parking) sign?

Out of interest, If you do not like "disabled" or "disability", what would you use instead?

#BeatCF

Heavy Growth Of Staph

September hasn't been nice to me. I am sick again. Maybe I had this infection already and needed antibiotics instead of steroids. Or maybe I needed both. 

I dropped in a sputum nearly 2 weeks ago. It showed a heavy growth of Staph. I thought to myself, if this what a heavy growth feels like then I'm doing OK. I went on a 40min run and covered 6 miles. I went home, went to work and felt perfect. The next day I woke up in so much pain in my ribs. I had been sweating at night for about a week prior to this but now it was sweating during the day. It is almost as if my body told my mind "ok, we've had enough. We will be sick together". I came home from work and rang Prof. I told him my symptoms and told me to come in and see him.

I got an x-ray which showed a huge white shadow about the size of my palm exactly where the pain is. I really should have taken a picture. 

So I'm on 750mg of Ciprox (twice a day) and 500mg of Flucox (4 times a day). It has wiped me out altogether. I am still running but doing about 10min per mile. Just to keep the mucus moving. I am up to saline 3 times a day and Cayston 3 a day as well. 

I will keep you updated when I get news etc. 

#BeatCF