Well for me junior school was actually pretty normal. I only ever had IV antibiotics once a year an always did them at home so i could go to school. I was very careful when i had a long line in because i was always running around and sometimes clumsy..! I think when my health went downhill when i was 11, it completely ruined my chance at high school. I left in year 9 as it was just too much for me to handle. I am actually glad i left when i did, as i don’t think i would of being in a good shape today. Obviously everyone’s experience is different, so this is just purely based on my experience. In year 7, i had to go into hospital for a week, which annoyingly was my first week at high school also. I did the first three days, then went straight in. They told me i had a collapsed lung, and also a chest infection…Turns out i only had a chest infection and did not have a collapse lung! I was gutted as i could of gone to school and maybe things might of turned out different..I actually became very very depressed at the end of year 7 due to missing lots due to more hospital visits, and my social life was going down hill fast. Everyone was saying how i was missing school for nothing and when i went back they would confront me and i honestly would break down and cry. I am actually so happy that i left when i did because i couldn’t of taken it anymore. I am now 18, and seeing a psychologist for my awful time at high school. I even kept having night terrors when i left, and i probably have one every three weeks now, which is such a relief. I never really went to high school thinking it would be a good day, considering i would start coughing and i wouldn’t be able to stop. Most of the other pupils would stare and even say something.  I did everything i could to try and stop coughing, but that made it worse! Its like i should of worn a massive sign saying CYSTIC FIBROSIS. It was so frustrating and embarrassing. I even started hating coughing at home, or even with my closest friends at the time.  Which someone with CF or someone you know with CF, its pretty hard not to cough at least once a day! I probably stayed at home nearly every day all day, and just shut the world out. I hated going in public because i was getting weaker from not doing medicine or anything like that. So mentally and physically i was getting weaker each day. I only ever felt comfortable at home, or hospital! It changed a lot for me two years ago thankfully when i met Jamie, I started going out more, and saying things for myself. It really boosted my confidence, unlike high school did! I still have a long long way too go. But when people say high school was the best years of their life, it was my hell. L x 

So on Monday this week i had my cf appointment! I was really nervous as i thought i had to go into hospital for a week or more. I was also feeling rubbish and just wanted to get better! I didn’t have such a good holiday due to coughing so much and i hardly went in the pool because i was coughing so much! So my lung function has dropped from the 4th may, it was 49% but now its 45%. I was super disappointed because i tried so hard! My weight stayed the same which is good. I also found out that on the 4th may i did a cough swab and grew a infection, which i wasn’t treating with the right medicine all holiday! I was so relived that i found out why i wasn’t getting better on oral antibiotics. So i have started on a new pill for two weeks twice a day, and also upped my Flucloxacillin. I am starting to feel better finally and i can now get ready for DISNEY WORLD in 5 weeks time! I also have some other good news! I have a new baby pygmy hedgehog, called Tallulah, shes adorable and is great company. I haven’t introduced her to my dogs yet, but that shall be fun! So finally, i am starting to feel better and hopefully i will be 100% for Disney! I just want to thank Jamie and my parents, for really helping me when i am poorly, and especially having to give up their time whilst on holiday! It means a lot to me and i cant thank you enough! L x

I thought i would make a post about how my cystic fibrosis has affected me physically and mentally. Its important to know that everyone with CF or a chronic illness is affected differently and not every story is the same! So, growing up was actually probably the best years with my cystic fibrosis. I had very few hospital admissions and only had a course of IV antibiotics once a year or even less! From a young age i never let it bother me and i had a normal childhood with it! But sadly, as i went through to high school, it started declining. I was not wanting to take my pills, do my physio,exercise anything! I hardly took my insulin and pretended i took it. Its important i share this i think as many young people with CF do not want to bother with their treatment or pills, and i think if i can try and make a difference to anyone who feels like this, they wont regret it when they are older! Anyway, i think i was taking probably two pills per day, when i should of been taking at least 15/20. Honestly, i regret this so much, i always think that if i could go back and change what i did, i really would. It has affected me quite badly i think due to getting chronic chest infections every other month. I never took anything at school because i didn’t want them to think i was different or anything. I became very depressed when i was fourteen, and that made it a hundred times worse. My old CF team even said i might have to have a lung transplant when i was 18. I literally couldn’t get up, everyday felt like a struggle and i just didn’t want to do anything at all.  Luckily, my life changed.. sort of. When i turned seventeen i just really wanted to sort my health and mental health out. I started on antidepressants and started speaking with my Adult CF team more. I had a lot of support from my family and my boyfriend. I started making charts every week to show what i needed to do and i slowly started taking my pills everyday again. I am not going to lie and say its not a struggle anymore, when it sometimes still is. But i am trying to look at the positives more than the negatives. I do my physio most days now, and i have started doing walking once a day (when i am not poorly!) I know i am not fully 100% yet, but i know i am getting there slowly.  I also have my hospital appointment tomorrow which i am not looking forward too! I think i will have a hospital admission this week, but if it gets me better and back on track, i am all for it! I would really like to start helping young people with CF or any chronic illness who struggle with daily treatment or have any other problems or worries! If you know anyone or even if its you, please get in touch and i will try my hardest to help! REMEMBER, YOU ARE NOT ALONE! L x

I’ve had such a lovely time here, apart from coughing and feeling like a zombie! But I can’t wait to get home and start to feel better.  Hopefully try something new also as my health doesn’t seem to be going in the right direction! Apart from the doom and gloom, I’ve read two books this holiday that are amazing! The Author is called Cecelia Ahern and she is amazing! I’ve read pretty much all her books and she’s such a good writer! I absolutely love reading, it really helps me when I’m coughing my lungs out and need to get my mind off it. Anyway, I hope the next holiday I go on I will be in much better health! It’s not exactly nice having stares thrown your way when your coughing and trying to not cough! But, I always think to myself, why let them bother you? They don’t know you, why give them your time of day and worry? Or just stare back which is also a good option! Just think of the positive of what your cough is doing, and it’s helping move all the rubbish from your lungs! They don’t need to know your life story. I’m going to be writing a blog post tommorow about mental health also which might help and you can also get to know me better! L x 

#cysticfibrosis #cf #mentalhealth #chronicillness #cysticfibrosisfighter 

So whilst I’m out here I have a really bad cough, and I’m out of breath from walking for a minute. I emailed my CF doctor and they told me I am still growing aspergillis. I’m a little upset that I’ve done everything I can to prevent this but hey ho. Its frustrating sometimes when you do the very best and it still isn’t good enough! But when I’m back home hopefully I can try some different medication and I will be back to my normal awkward self again! Atleast I can try and relax for the rest of my holiday! ☀️ L x 

My port story wasn’t exactly a ride in the park, and isn’t for everyone! I had mine fitted in my left arm when i was 15. It was the 5th of February and i was still with my pediatric team in Leeds. I was going in to hospital for a course of IV treatment, but i was going to be having the medicine through a long line… i thought anyway. I had the “magic cream” put on both my hands and both my arms. I was thinking how i am so used to having a long line so it will be a breeze and i will finish my IVs at home.But once they took the “magic cream” off, little did i know i would be having a port fitted the next day.By the way, for people who do not know what “magic cream” is, its an antiseptic cream that completely numbs all the area up to 20 minutes! Anyway, i was sitting on the hospital bed and waiting for it to be over within 10 minutes! First try…second..third..and a whole lot more tries, enough to make my right hand turn black, and also my right upper arm. |I was starting to get very stressed and upset by the time an hour had gone by. They left me for 5 minutes to have one last go and if that wasn’t going to work, they would put a portacath in the next morning. I honestly thought that would never happen and it would easily go in when i went back into the room..I line didn’t even go in. They got the needle in, but the line was just not budging! So they told me about coming back tomorrow to get a portacath fitted and stay in for a couple of nights. I honestly was so scared, i never had a operation before that one. I got home and i could not get back to sleep. I was just looking up at the ceiling so scared and thinking all the doom and gloom.I had to get up at 4am the next day and be there by 5am. I got everything packed and i was so scared, But by this time i was that poorly i just wanted the IVs to start working! I was going in for the portacath at 11am and i think i came round at about 2:30pm. When i was walking to the operation room i took my dad with me as i wanted him there more than anyone. He was trying to make me laugh still and try to put a smile on my face. I layed down on the table and waited as they put the canula in my hand ( the one that was bruised and hurt so bad!) and  i saw this white liquid being pushed into the canula, my last memory after that was dad stroking my head. I finally woke up and my throat was so sore! But i was glad it was all over. I was really intrigued to see what it looked like, but it was all covered up in plasters and dressings. Two weeks went by and i could finally see it! they took the bandage off and it was so big on my arm! i had hardly any fat on my arm, so i was so so self conscious of it! I was told it was small and you can hardly see it, but it looked massive on my arm. I was quite upset at this point and tried everything to hide it. But was i got older i embraced it! I tried to always remember that this is such a better option than a long line, and it makes me who i am. I still get a little self conscious of it, but then i remember that it helps me when i am poorly and its a good conversation starter! Anyway, that is my story of how i got my port! Hope you enjoyed it! L x

I haven’t been posting as much recently as I have been feeling quite poorly! My chest is feeling heavy and I keep having coughing fits in public which doesn’t help! But I am now in sunny Gran Canaria and it’s helping my chest quite a bit. Although I am very very salty! I’m going to post tonight about my port as I was going to last week but I ended up coughing and going to sleep at 2am! But yes, I am now having a lovely holiday and hopefully I will start to pick up soon! L x 

   #positivepost  #positive  #positivevibes 

I came home the next day thankfully! I was so nervous I was going to have to stay in longer. I’m on home IV antibiotics now for another week, so hopefully that will boost me up in time for my holiday! IV antibiotics always makes me so tired though, if I go out I have to come back after 15 minutes from being shattered and normally coughing my head off. It’s annoying coughing in public as most people tend to stare. They obviously don’t know I have Cystic Fibrosis but it’s still verh difficult for me. It’s not like I can go around with a big sign on my head saying I have Cystic Fibrosis please stop thinking your going to catch something. It’s very frustrating at times and that sometimes makes me cough even more. But when I’m well I hardly cough at all! So I’m looking forward to getting back on track again. I think this time getting poorly has really affected me in different ways. I was doing everything I could possibly do. Like my physio, exercise, pills, everything! And to get poorly really has made me feel a lot more depressed about it all. But I’m trying to look forward and upwards! I just can’t wait to relax on holiday for a week! Hopefully I won’t be having to go on IVs for a while. I’m aiming for about a month and a half to start with, then aim higher! ⭐️😌 L x