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

Being in Beijing

I highly doubt that there are 9 million bicycles in Beijing. Although, given that the population is 26 million then I would probably say 30% do have bicycles. Nobody really cycles them. Scooters (electric and push), and cars are the main modes of transport. I haven't seen an underground or subway equivalent. However, a 30 min taxi costs between ¥37 (€5.30ish) and ¥56 (€8) depending on traffic. So why would you bother taking public transport. I'm in a taxi writing this as well. With no seatbelt. Well, they do have seat belts but nothing to connect the seat belts. It's like playing Russian Roulette, or in this case, Beijing Roulette.

Yas and I visited the Bleedin Deadly Wall of China. If you don't like steps then don't go. If you like skipping leg day, then don't go. It's like lunging for an hour straight! Then having to walk, or jump down the steps, which resemble more like a small cliff. Other then that, it has lovely views, and it's a goal (recent goal) to visit the 7 Wonder Of The World. 1 down, 6 to go! 

Dotted along the wall are shops selling nic nac shite that I love (Yas hates). Teacups, fridge magnets, beads, coins, and a Che Givara  tshirt! No idea he had such an influence on the Great Wall! 

I think the pollution and weather was a great surprise. There is very little pollution, given that it's a huge city. I was told that the factories have stopped production to let the pollution calm down. The weather has been mid 20s. It's nice. 

As a whole, Beijing has impressed me. The people are so nice, and most can speak English. They go out of their way to help you. Yes the spit a lot, but this is good for people with CF. Sometimes you have a big mucus filled gollier (spit in Ireland) in your mouth and you need to get it out. It's ok in Beijing. Just spit!

There is a huge culture for food. Instead of visiting art galleries or history museums, the Chinese love to eat and talk about where the best food is for dinner etc. This is something that Yas and I love. Yes we love art and history, music and sightseeing, but our day is made up of food. We search places to eat before we go to a country. Not just typical restaurants. Places that are off the beaten track. Little gems that don't cost an arm and a leg to eat at (we still eat at those as well). For instance, we had 12 cooked oysters in garlic, chilli and coriander, with soy sauce. About 4 handfuls of prawns, these amazing noodles and it all cost about €30. Less actually. We were stuffed after. The oysters are one of the best mouthfuls of food I've ever had. Raw oysters is something I cannot eat. I tried and just couldn't. I love raw food but these I just couldn't. Blue mouldy cheese is another and pickles are the last thing. Those 3 I even feel sick thinking about them. But cooked oysters is a whole different ball game. 

I think that Ireland and the UK are the only countries that don't use their horn in their car. Every country, especially in Beijing and Algeria, they love blowing their horn. They might as well tape it down so it's constantly on. It would be so much easier.

So back to business. Taoufik is thru to the semi final of the World Champs (1.05pm Irish time - 28th of Aug). The final is on Sunday around the same time. Should find it on the BBC. He looked ok in the heats but he hates mornings so this is probably the reason. The main thing is not to analyse it and take each races as it comes. Focus on the task at hand. I tell people this - it's not how fast your legs can go, it's about how mentally strong you are. 

All is good here from Beijing. I will update with a video as soon as I can find my lead for my GoPro! 

#BeatCF

Cough Up A Lung

It seems to be a yearly episode of coughing up blood. The last time it happened was last August when i was in Portugal. I had the Air Con on. Over the weekend, I was in Paris which it was 38 degrees. I had no choice but to put the AC on. I am convinced thats why I am coughing up blood a few days later. The weather has changed dramatically. It was raining yesterday and the day before. So going from really high temperatures to cold and damp conditions, i think, plays a part in it. 

There can’t be any other reason as I am still able to run. 

• Monday - 40 minutes cycle, + 25 minutes run, 
• Tuesday - 55 minutes run + yoga 
• Wednesday - 30 min run
• Thursday - held a plank/bridge for 1 hour and 21mins.

I think the thing to do in this situation is relax, put the kettle on and time to calm down. Stress is another reason why it can happen. I have learnt this from past experiences. I know I don’t have an infection as I wouldn’t be able to do the amount I am doing. 

At the moment, i am in a place called Font Romeu. Its situated in the French Pyrenees. I am living at 2000m above sea level, and its by far the easiest altitude I have been at. Ethiopia is the highest I've been to at 3200m. Flagstaff in America was the hardest and it was about 1800m i think. Not sure why it was so hard to adapt up there. 

So I travel to Beijing in about 10 days for the World Athletics Championships. I will hook up with Yas as well which will be cool as Asia is one of the places on our to do list. 

Speaking of which. Earlier in the year we both wrote down 3 name places that we wanted to go in October. October is our anniversary, hence the little trip. We both had Berlin as one of the destinations. Berlin it was! Im looking forward to that. Munich is still the best place I've been to. Berlin is supposed to be better. But, I feel that it isn't necessarily the place that makes it great, i think its the company that you are with. 

The athlete I'm working with has improved by nearly 2 seconds over 1500m. His now the 4th fastest person ever in the 1000m. So he is coming into perfect shape to win World Championships. Here is a few pics below of the last bit. 

Edu seeing me taking my neb for the first time. He wouldnt let go of me. So cute!

Article in the Meath Chronicle 

Doing a session on the track. 

This was taken from a French newspaper that Taoufik was in. 

This is a picture from Font Romeu. Not a bad view. 

I Think Im Turning Into A Hippy

I have been absent from this blog for quite some time now. Not that I haven’t had time, I just don’t really know what to write about. I have 3 blog posts in the drafts that I haven’t posted. Actually 4. But maybe I will be able to delve into that sometime in the future.

Currently, I am in Angers. A nice little town in the North-West corner of France. Stuck between Nantes and Le Mans. I’m sure you have heard of those two places. Its level with Paris but best for about 2 hours on a train. Failing that description, just Google it. 

I have been here for the last month. The temptation of Macaroons and Eclairs are on every street. If that isn’t enough, you can get a macaroon scented candle, and soap. Although that it hard, being a weekday vegetarian is easier. I don’t like the milk here, so i am now becoming a weekday Vegan. The only reason I say I am a ‘weekday’ is because I eat animal protein on the weekends. I love the cheese here so its is like a treat for me. In the past, I tend to do things at 500 miles an hour and give it either 100% or 0%. I can’t do things at 50%. So weekday vegan/vegetarian is something that has been challenging in terms of not going out and changing my whole wardrobe to 100% Fair-trade Cotton and Vegan footwear. I haven’t started petitions or went on animal cruelty marches outside government buildings. I don’t push it on anyone else as well. It was my choice to do this. Both for a health and environmental reason. 

Health reasons being that we do not need to eat animal protein. Eggs, fish, chicken, meat, game. I believe that it is fair healthier to eat everything from a plant basis. 

Environmental reasons being that if we eat more meat, then more animals have to be raised which causes more methane (a biproduct of animals farts and burps). This gas causes more of a problem to global warming then cars do. If everyone decided to choose to cut down on animal protein, it would have a greater result then if everyone started driving hybrid cars. Furthermore, the cattle then have to be fed. More cattle = more food. Food that could be used for humans. The transportation costs of both feed, then the animal to the slaughterhouse, and then to the shops is astronomical. Animals that aren’t organic, are pumped with anti biotic, which results in humans becoming more resistant to antibiotics, which leads to the creation of super bugs. Its all a vicious cycle. 

I think i just went 100% there. Anyway, you get the gist. Do I feel better for being on this diet? Yes. I don’t feel like I’m bloated or slumpy (i just made that word up). I feel more regular. I can make better decisions, rather then just throwing everything into my mouth and not caring what or where it came from. 

Another big addition that I have started was meditation. I do it everyday, and for a minimum of 20mins. Usually, if I only do 20mins, then I will do another 20 later on in the day. I just finished meditating for 40mins there. My longest was 90mins. It felt really good. Yes, at the start of meditating, i could only last 3 minutes, and even that was a push. But its like exercise. The more you do it, the easier it gets. My sleep patterns are more regular, I am not as angry as I was, I am more sympathetic to myself, and to others. I realise when enough is enough. I even have more energy throughout the day. Whats not to like about the benefits. There are so many things on youtube and the internet on how to begin meditating. If i was to explain to someone how to do it, it would be like this. 

1. Go to a quiet room, and turn off all the lights and electricity that you have on in that room. Phones, laptops, tablets. TVs. 
2. Look somewhere between your nose and the ground. That space in between. If you can’t, then just close your eyes, but remember to relax the muscles around your eyes.
3. Count on every out breath until you get to 16. Repeat 3 times. This should take around 3 minutes. For me, it takes 3 minutes to do 16 breaths. But at the start it was 16 breaths to 1 minute. 
4. Breath from your stomach, not from your chest. 
5. Focus on relaxing every muscle in your body. Scan through each body part. You’ll be amazed at how much tension you are holding. 

So enough about that. I am going to go on a run now, and then start massaging. 

Do your best. 

Adios

Zinc + Vit D In Helping Diabetes

Low serum vitamin D levels are more closely associated with diabetes than obesity is, claim Spanish researchers, who go on to suggest that vitamin D deficiency may be linked to an increased risk for type 2 diabetes.

They found that serum 25-hydroxy vitamin D levels are reduced in prediabetic and diabetic individuals compared with those who have normal blood glucose levels, independently of body mass index (BMI).

The study was published online February 23 in the  Journal of Clinical Endocrinology & Metabolism.

"Our findings indicate that vitamin D is associated more closely with glucose metabolism than obesity," commented senior author Manuel Macías-González, PhD, of the University of Málaga, Spain. "The study suggests that vitamin D deficiency and obesity interact synergistically to heighten the risk of diabetes and other metabolic disorders.

"The average person may be able to reduce their risk by maintaining a healthy diet and getting enough outdoor activity," he suggested.

This is interesting with Ireland and also with CF. Vitamin D is a fat solubale vitamin and we all know that PWCF cannot absorb them. However, you can get Vit D from the sun, and thats what the study also suggested. Although, CFRD isn't down to not just getting enough sun, getting outdoors, or maybe taking a Vit D supplement can help with CFRD.  Also, Vit D deficiency can also be related to depression and low moods. 
Consult your Dr before jumping into buying Vit D supplement!!!

Zinc is also another supplement that can help with Diabetes. It is an essential mineral that plays very important roles in the body. We cannot make zinc, so we need to find it from food sources. seafood, legumes, whole grains, nuts, and dairy products. Zinc is better absorbed from animal foods than from plant foods, since compounds called phytates that are found in plants can hinder its absorption

It is stored in the muscles, blood cells, the retina of the eye, skin, bones, kidney, liver, pancreas and in men, the prostate.

Zinc helps with our immunity system to function correctly, in the form of an antioxidant. It protects our cells from free radicals. 

However, I'm not talking about zinc to help our immune system but I feel its good to point it out. Zinc is essential for the formation of insulin in the pancreas. 
Interestingly, a study over 7 years showed that people with Diabetes and who died from a heart attack were zinc deficient. 
One reason for this is that diabetics tend to have increased excretion of zinc. Additionally, high blood sugar levels creates significant oxidative stress. Thanks to research from UCD we know about oxidative stress and mucus formation in CF ( UCD Research on CF ). The use of antioxidants has been shown to help improve oxidation, while also enhancing your body’s response to insulin.

On another note, zinc can also improve your mood. People who suffer with depression have shown to have lower zinc levels.

But before you go popping any of the above, talk with your Dr as there are some side effects to both supplement. 

"Change The Way You Look At Things, And The Things You Look At Changes"

I made a deal with myself when I was younger. A deal, or a dream, i'm not sure which one it was. The idea of competing in The Olympics was always a goal. Sadly, I never reached that goal. The goal switched from competing at the Olympics to working with an Olympic Champion. Within the short space of time graduating from college as a Sports Therapist and then Traditional Chinese Acupuncture, I have reached that goal. I have posted it on my Facebook, but for those of you who aren"t friends with me on there, I am now the full time therapist to Taoufik Makhloufi. He won gold at the London Olympics in the 1500m. (click here to watch -  London Olympic 1500m Final )

Currently, I am in California with Taoufik. It might seem all jolly but trust me, it's hard. I miss my girlfriend Yasmina, and my family. I read a good quote "you flourish best where you are planted". I think it was in the Bible. While I don't have a belief in a religion, I can still have an open mind to take things from scriptures like the Bible or the Quran. I believe that these books might just be really good philosophy books. Anyway, that quote resonates with me, but I don't entirely think it is true. If you refer to my last blog post about The Heroes Journey, you will understand my thinking. I'm not trying to say i'm a hero by any means but i think everyone takes these types of journeys.

I believe that everyone hides behind a keyboard or phone in social media. They are keyboard warriors. They won't actually put up what mood they are actually in. So peoples Instagram accounts is a false identity of what they are. They "go" to the gym but don't actually workout.
I'm guilty of this as well. By looking at my social media you might think I don't have a care in the world, and everything is brilliant. But it is never easy being over the other side of the world, alone from the people I love, and what is familiar to me. Part of me loves experiencing new cultures and anything new. But i want best of both worlds. To be with my family and Yas, and experiencing all this brilliance the world has to offer. Sadly that can't happen, and I realise that i will be back at home relatively shortly! I need to step back and be in the now and see how lucky I am that Taoufik has put a lot of faith in me that he believes I can be apart of the team, and also how grateful I am that I can live what my dream was.

I will leave you with a link from the Anton Savage Show on Today FM that I did just before I left, and an article that was done in the Mirror.

ANTON SAVAGE - TODAY FM INTERVIEW

The Irish Mirror Article

Adios

#CysticFibrosisAwarenessMonth

I was recently talking to a parent who's son had CF. I was totally gob smacked at what I was told.
So her son is 3 years old and was diagnosed fairly young. For the last 3 years he was using Hyp Saline and he was given the wrong mouth piece until the nurse told the mother that he wouldn't have been even getting any use out of the Hyp Saline. Only after 3 years did they realise they were giving her the wrong mouth piece.

Hold on...it gets worse!

The nurses in Temple Street said not to do physio or anything else other then blow into this blue pipe 15x3 times a day. Only do the physio if he gets sick!! I have never heard such utter crap in all my life. The whole reason to do the physio is so he doesn't get sick. The old saying goes "prevention is better then a cure" rings true in this instance.
How can a qualified nurse advise a PWCF mother to do this? I'm still shocked at it. Thankfully, because the mother talks to me, and I strongly believe that doing extra work like exercise, and especially running, along with physio and pep mask is the only option. Do everything, and everything 110%!
I'm turning 27 this month. Not a single IV or hospital admission for treatments (I don't count my seizures as an admission as I was out on a run and I was depleted of sugar!!!!!!!!!!!!!).

I feel that some people these days work just because they have to, and not because they love that job. If you don't love it you won't apply yourself to your maximum capability. I'm not saying that that particular nurse doesn't live her job, she's just clueless at home-care advice for CF.

I'd like to let everyone know that a PWCF called Katie Murphy is running the Women's Mini Marathon next month for CF (1 in 1000). She recently went onto Kalydeco and has turned her life around in the last few months. Running 10k with some 50,000 other women is a great achievement and shows what can be done! Beast Mode!!

It is CF Awareness Month this month. If your doing any exercise, and you have CF, then please tweet with #CysticFibrosisAwarenessMonth and let's get it trending.

My own running is going good. I'm running more then I have since the seizure 6 months ago. I'm doing tempo runs now. Tempo runs means running at a certain heart rate for a period of time. Normally your heart rate is between 70-80% of your max heart rate. So I did 20minutes with my heart rate at 170 BPM which got me 3.97 miles. So that's roughly 5 minutes per mile. I didn't think I was in that shape but I'm impressed myself!! Maybe I should start back racing. The last time I raced, I won it, and had a seizure the next day. Hahahaha.
I'm running around 50-60 miles a week with 3 strength and conditioning sessions in that as well. All in all it's going good.

Adios
Ev
#CysticFibrosisAwarenessMonth
#BeastMode

Kalydeco

New drug for CF. It's called Kalydeco. "It's what insulin is to a diabetic" is one description of it. Follow the link to see more.

http://www.washingtonpost.com/national/health-science/breakthrough-in-cystic-fibrosis-treatment/2011/11/02/gIQAr2TrgM_video.html

I'm not sure what strain of CF it treats or even if it's the same as the Ivacator drug with a different name. Once I find out (which will be later on today) I will post it up. It seems to help in the same way as the initial drug. But im not sure.

If it is a second drug then thats two in the last year. This is crazy stuff.