You can read more posts about my CF here:
My life with Cystic Fibrosis
Cystic Fibrosis (another post)
Sooo... how does CF affecte me in daily life?
Well first off its the medication. Lots and lots of medication all day everyday. Below is a picture of what i take with breakfast (either before or after).... i am not going to write each medication i take as that is not relevant.
I take medication 3 times per day, but most in the morning and then 50% of what i take in the morning i take again during lunch time and i take again in the evening.
Then i also take medication to help me absorb food and when i was younger i used to take about 20-30 per day but now i only take them on occasion. I was pancreatic insufficient when i was younger, but now i guess i dont need them anymore as i only take them if i eat say 100g nuts or cream cake or if i eat a very creamy or oily dish, then i need them as my body cant absorb the fat and it can leave me with very uncomfortable cramps otherwise. But i am thankful that i dont need them anymore, generally speaking if you are pancreatic insufficient you dont magically become pancreatic sufficient again... my pancreas couldnt produce the enzymes, but i havent taken the enzymes on a regular basis since maybe 2007 and even then i only took them when i remembered. So now i dont get any pains when eating, my digestive system works fine and my food gets absorbed. And all my blood samples come back 100% healthy and im not lacking anything. And yes of course, if i eat more than what my body needs i gain weight, but i can also lose weight quite quickly.
Then i also take inhalers in the morning and evenings and i am also going to begin taking asthma inhalers as my doctor thinks i might have asthma as well, though i havent gotten around to going to the pharmacy to get those.
I also then do other inhalers... the ones where you sit and breathe in this mixture for 30-45 minutes combined with these different breathing exercises and i should do that 3 times a day, but i most often only have time for it once a day.
Then after i do those inhalers i need to do some form of exercise so then i usually go for a walk/run or go to the gym. (I think it is quite important for my readers to know that because of my CF i do need to be active. I need to move my body and get rid of the mucus in my lungs.) Preferably my doctor would want me to do running or swimming 6-7 days a week, though thats not always possible. I noticed in the start of 2014 when i focused on strength training and cut down on running, then i found it alot harder to breathe because i wasnt doing any cardio so then i added HIIT and it felt alot better :) So i make sure to do some walking/running/HIIT most days a week to keep my lungs healthy and clear.
When i was at Mando the fact that i couldnt do any exercise caused alot of problems between the doctors at the CF clinic and the doctors at Mando. Because the CF doctor said that i should be allowed to go for a walk everyday and then just eat a little bit more, but because i did have an exercise problem as well as being so underweight the doctor at Mando said no that i wouldnt be allowed to do that. When i was underweight and not eating enough, then my lung function dropped to 40% which is very low and considering that before that i had had a lung function of 100% and now i am around 90-95% which is good. I was also on antibiotics pretty much twice a month (for 10 days) but eventually had to take antibiotics for 8 weeks at a time as i was getting so many infections and bacteria in my lungs and my immune system was so low that i couldnt fight any of the infections off. So by being so underweight it had an extreme impact on my CF and i remember i spent alot of time coughing and each cough would shake my body so much and leave my throat dry and burning, especially because at Mando i was only allowed to drink a certain amount of water.
But back to present day :) My lungs are most affected by my CF and i can find it very hard to breathe especially when going up stairs. I have good cardiovascular health, but stairs are the enemy for me. I feel this tightness in my lungs and can feel dizzy at times as i dont get the oxygen i need. I would explain it like having a very tight belt around the top of your lungs and you cant breathe deep..... like you know those times when you are laughing so much or trying to yawn and you just get these very light breaths, you cant breathe deep? Thats how i feel 80% of the time.... and at times i can start panicking because i spend 5 minutes just trying to breathe deep and i get this feeling of choking or drowning because my lungs are screaming for oxygen and i just cant breathe deep enough for the bottom of my lungs to get that oxygen.
Its strange, sometimes i feel like everyone feels like this, but when i talk to my mum or sister i realise just how unnormal that is... to struggle for breathe isnt normal. But also i can sound very breathless and walking and talking isnt possible for me, i need to do either or.
It scares me alot when i feel like i cant breathe, its then that i can begin fearing the future and what the future holds for me? Because i am healthy, but my CF does stop me from certain things and sometimes i cant even run because my lungs dont allow me to get the air i need and i just feel this sense of panic and choking.
I have been told my whole life to avoid being in crowded areas such as concerts, festivals, in town, airports etc and that i shouldnt share food or drinks and should definitely not kiss someone who is sick (not that people usually do this... but i mean if my partner is sick, i basically need to stay away from him.) Because a normal cold can cause alot more problems in my body as the bacteria gets stuck in my lungs and produces more mucus and makes it harder to breathe and can leave me sick for weeks to months. So i have a huge fear of being around people who are sick because i am so scared of getting sick myself and then being sick for weeks to months. (Such as when i was younger and had 60-80% absense in school due to being sick at home or being an inpatient in hospital with IV antibiotics) .
Because i have CF and i shouldnt take public transport i have a taxi card, so i can take taxis anywhere (though have to order them first). But i dont like doing this because i have had some weird experiences while in a taxi, so i much rather walk or take the tube/bus somewhere. Though late nights out its kind of nice ot have the option of a taxi and not having to pay a ridiculous amount.
I also have to go to the doctors every 4-6 weeks to get blood tests, meet a physiotherapist, dietician sometimes, meet the doctor and then once a year i have to do loads and loads of tests which take 2-3 full days (8-5pm) where basically everything in my body is tested to see what is happening in my body and if anything needs to be done.
And to finish off.... my livers and kidneys are also affected and there are chances that i can develop CF related diabetes or end up having a lung transplant in the future if my lungs get too clogged up with mucus.
This post turned out very negative, hahaha. But in all honesty, there isnt anything positive about CF. The only half positive thing is that i can take a day off or a week off school if i feel i need it and have a valid reason. But the valid reason is that i am getting sicker, which i of coruse want to avoid at all times. So if i have to take a day off because of my CF its not something to be happy about.
Its an illness i have had all my life, so i have learnt to deal with it. To think of my future as any normal person, not think so much of what role my CF might play in my role. Because in the end, i could get hit by a car tomorrow and die or end up with cancer a year from now... who knows, so i dont want to live my life scared or think that i might die in 10 or 20 years because of my CF. Thats a life of fear and i dont want to live with that anymore, pretty much half of my life i have lived in fear and worried. But as long as i keep myself healthy and eat a healthy diet and enough food, take care of my CF, take my medications and make sure to stay active then i dont think i have so much to worry about. My CF could be worse, there are those who die at the age of 10 because of CF or are 12 years old and have to have a double lung transplant. I have actually made it x years and not been super affected by my CF and i hope to stay this way!!!
Im sorry for the long post, but i guess i realised i had alot to write, haha. But you can of course ask any questions you have :):)
I think this music video is great: