Whilst I was admitted to hospital about a month ago I realized something, other Cystic Fibrosis sufferers were seen as the enemy when in reality they were people just like you trying to cope with this life changing disease and probably wanting someone to talk to just like you.
Now I know not all people think CF sufferers are the enemy, and I'm not saying I do think that. What I'm trying is our parents all want us to stay separate (for good reason - so that we don't get ill) and whenever they see someone else with CF near you, they panic and get annoyed with or scared of the other CF carrier. They only do this because they are worried for their child's safety but It's irritating to me and I just can't stop thinking about it.
When I was in hospital I had my own room in the children's unit (I am only 13) and in the room next door to me was where another CF patient was staying. My mum, every time the little girl left her room and went into the hallway with her parents my mum would get anxious and start acting as if the child was a demon or something. She was only about 5 years old and already having to go into hospital, it wasn't fair for the little girl and it made me mad and irritated with her but I didn't really think much of it. That was of course until I was on the receiving end of those judging and worried stares...
It was later on in the day, or maybe a new day entirely, I don't remember too well because I was on lots of medications, having to get up early, and having t go to bed late so I was pretty sleepy. Anyway, I was walking down the corridor with my Physio doctor and we were just walking back into the ward after doing an exercise and physio session when the little girl with CF and her parents were walking out to take the girl to nursery. The little girl ran ahead and her parents saw me, they knew the physio doctor only worked with CF patients and they had also probably seen me in the hall, just like I had seen them, from inside their daughter's room so they knew I had CF. They looked at me and I could see the fear and irritation and judgment in their stares, just as my mother had shown to their daughter. I felt horrible. I understood then that all CF people were the same, just trying to understand and have someone who understands to talk to. I knew why people saw other CF carriers as the enemy, but I also knew that they weren't. CF carriers were not the enemy, they were a friend. They were just the same as me, the same as anyone with CF. They didn't deserve to be feared.
If there's anyone with CF reading my blog please contact me, :).
Thursday, 2 March 2017
Saturday, 21 January 2017
My Cystic Fibrosis Story
Hi,
I am a 13-year-old girl living with Cystic Fibrosis. I have always managed to stay healthy despite my condition. I was diagnosed at 12 weeks old because I wasn't gaining any weight and so the doctors started running tests on me. I have never known life without having CF. I remember seeing other kids eat food without having to take tablets beforehand and feeling like they were forgetting something even though I knew in my head that it was normal to eat food without taking tablets, that was just something I (and others with CF) have to do.
I was never a huge sufferer. I didn't think having CF was a big deal. I remember getting the opportunity to have a 'make a wish' thing but I turned it down. I couldn't understand why I would need that, I was healthy even though I had CF and I wasn't in any trouble. There were people who needed things much more than me and I would have felt guilty taking it.
I don't think I had really accepted that I had a shorter life expectancy due to CF. That could have just been because I hadn't really researched my condition much then as I was only young, or just because i was naive. I have since realized that I will not live as long and that doesn't scare me.
I have accepted my short life expectancy but that doesn't mean that my parents have. I've never brought it up with my Dad, not for any particular reason it just didn't come up. With my mum, I remember telling her like it was no big deal that I was going to die younger and she started crying. I didn't understand why it was such a big deal. (I'm still struggling with this now but I am starting to understand.) I wasn't afraid of dying. It was as simple as that. I didn't care whether I lived or died. I wasn't depressed. I just didn't care.
Then i got a cough. It was just a cough, it was dry and i wasn't producing anything but it continued on for a month. I had been issued different types of antibiotics to help beat it, but they didn't help. Then I started to get a pain in the bottom of my chest on the left side. It was a stabbing pain but it wasn't that bad. I told my doctors about it and I went in for an x-ray just in case here was anything wrong. My doctors then suggested me having IV's for two weeks straight away, or steroids for a week and if they didn't work then go on to IV's. I have a fear of needles so she said it was probably best to do the IV's straight away.
I was admitted to hospital that same day. I had IV's and damn did they make me tired. This was the first time I had been admitted to hospital since I was a baby and my first time of having IV's. I was staying up late for them and waking up early. I was being let out in between treatments so I could go to school still but I missed out on the first few lessons each day. I had a long-line in not a cannula so I just had it bandaged up on my arm and covered it with my sleeve so no one asked questions. After 2 1/2 days, they decided my cough was not going so they put me on some steroids too. In my opinion, my cough started getting better that same day but before the steroids were given but who am I to argue against my doctors? I did tell them this though.
After 5 days in the hospital, they let me go home because they had taught my mum how to do my IV's at home so they didn't need me to stay in anymore. My cough was much better by now but was still there. When my doctor came to my house to look over my mum doing it from home for the first time, the long line wasn't letting any of the medication through it. It was blocked. The doctor took it out of my arm and showed me where it was blocked at the end.
I have really tiny veins. You can't ever find them, it was a miracle that they found the vein they put the long line in in the first place. My doctor said that because my cough was mostly better i could go without it because they couldn't find another vein to put another one in. I was told to keep taking the steroids and some other antibiotics and I should be okay.
My cough came back. It's getting worse i think. I have just finished the steroids course and I am still on the antibiotics. My doctor is coming to my house on Wednesday after school to check on me and my cough and I think she's going to tell me I need IV's again. I don't want them. I know I'm getting worse. My condition is getting worse and I know it. I'm not that scared. I was for a bit but not anymore.
I hope you didn't find this too boring or stupid or whatever. I just wanted to add that I have a little sister who doesn't have CF (luckily) and we don't get along a lot of the time and she doesn't understand anything I'm going through ever and she can be so insensitive and it really annoys me but also makes me feel a bit upset and alone.
If anyone else with CF would like to talk please comment. :)
-Millie
I am a 13-year-old girl living with Cystic Fibrosis. I have always managed to stay healthy despite my condition. I was diagnosed at 12 weeks old because I wasn't gaining any weight and so the doctors started running tests on me. I have never known life without having CF. I remember seeing other kids eat food without having to take tablets beforehand and feeling like they were forgetting something even though I knew in my head that it was normal to eat food without taking tablets, that was just something I (and others with CF) have to do.
I was never a huge sufferer. I didn't think having CF was a big deal. I remember getting the opportunity to have a 'make a wish' thing but I turned it down. I couldn't understand why I would need that, I was healthy even though I had CF and I wasn't in any trouble. There were people who needed things much more than me and I would have felt guilty taking it.
I don't think I had really accepted that I had a shorter life expectancy due to CF. That could have just been because I hadn't really researched my condition much then as I was only young, or just because i was naive. I have since realized that I will not live as long and that doesn't scare me.
I have accepted my short life expectancy but that doesn't mean that my parents have. I've never brought it up with my Dad, not for any particular reason it just didn't come up. With my mum, I remember telling her like it was no big deal that I was going to die younger and she started crying. I didn't understand why it was such a big deal. (I'm still struggling with this now but I am starting to understand.) I wasn't afraid of dying. It was as simple as that. I didn't care whether I lived or died. I wasn't depressed. I just didn't care.
Then i got a cough. It was just a cough, it was dry and i wasn't producing anything but it continued on for a month. I had been issued different types of antibiotics to help beat it, but they didn't help. Then I started to get a pain in the bottom of my chest on the left side. It was a stabbing pain but it wasn't that bad. I told my doctors about it and I went in for an x-ray just in case here was anything wrong. My doctors then suggested me having IV's for two weeks straight away, or steroids for a week and if they didn't work then go on to IV's. I have a fear of needles so she said it was probably best to do the IV's straight away.
I was admitted to hospital that same day. I had IV's and damn did they make me tired. This was the first time I had been admitted to hospital since I was a baby and my first time of having IV's. I was staying up late for them and waking up early. I was being let out in between treatments so I could go to school still but I missed out on the first few lessons each day. I had a long-line in not a cannula so I just had it bandaged up on my arm and covered it with my sleeve so no one asked questions. After 2 1/2 days, they decided my cough was not going so they put me on some steroids too. In my opinion, my cough started getting better that same day but before the steroids were given but who am I to argue against my doctors? I did tell them this though.
After 5 days in the hospital, they let me go home because they had taught my mum how to do my IV's at home so they didn't need me to stay in anymore. My cough was much better by now but was still there. When my doctor came to my house to look over my mum doing it from home for the first time, the long line wasn't letting any of the medication through it. It was blocked. The doctor took it out of my arm and showed me where it was blocked at the end.
I have really tiny veins. You can't ever find them, it was a miracle that they found the vein they put the long line in in the first place. My doctor said that because my cough was mostly better i could go without it because they couldn't find another vein to put another one in. I was told to keep taking the steroids and some other antibiotics and I should be okay.
My cough came back. It's getting worse i think. I have just finished the steroids course and I am still on the antibiotics. My doctor is coming to my house on Wednesday after school to check on me and my cough and I think she's going to tell me I need IV's again. I don't want them. I know I'm getting worse. My condition is getting worse and I know it. I'm not that scared. I was for a bit but not anymore.
I hope you didn't find this too boring or stupid or whatever. I just wanted to add that I have a little sister who doesn't have CF (luckily) and we don't get along a lot of the time and she doesn't understand anything I'm going through ever and she can be so insensitive and it really annoys me but also makes me feel a bit upset and alone.
If anyone else with CF would like to talk please comment. :)
-Millie
Subscribe to:
Comments (Atom)