"I can't breathe"

So the last few days have been different. On Wednesday I had to go to a&e because I was unable to breathe. Something like this has never happened to me before , I have exspirenced being poorly and my lungs feeling crap and making everything harder for me. But never to the point where I can't physically breathe. It was scary and such a relife when I could breathe again. I'm not 100% sure at the moment as to why I am feeling like this and why this all happened. I obviously have grown something, or something is going on in my lungs. I also have sinusitis at the moment along with polopes , so breathing threw my nose isn't easy anyways (adding to the stress of it all) as I write this I am at my cf hospital the royal brompton. I have just had my bloods done and we will see what the rest of my tests and team have to say ......

So lung function was 60% , abit of a drop  from my last blow , 73% , but the docs where not too flustered and didn't think I needed Ivs. So they gave me orals and a new inhaler just incase I can't breathe again and off i popped back home. Its been a few days since I was at the hospital and I am starting to feel more human , it's just showen me that I really do not want to feel like that again. And it scared me to think possibly that could one day be my "normal" , let's hope not & I can't think like that. So onwards and upwards , a few days ago I couldn't even wear a bra as it just closed my chest up to much, so now I have one on im feeling more classy haha x 

Christmas countdown.

So it is the 20th December, 5 days untill christmas. I have a cold at the moment so been feeling abit crappy. I am starting to feel abit better , but my cough is still there. It's embarrassing being out and feeling like everyone is looking at you. I am off to London today and I'm looking forward to it , but also abit nervous as I am coughing still. I know it's silly, I shouldn't be scared or embarrassed to cough but I don't like people looking at me like I am going to make everyone I'll. I don't like being looked at as the "sick" one. Any who I am looking forward to Christmas , hoping I feel better buy then. I have a few more present to wrap , the problem with being organised is that all my presents where bought ages ago. But it has just ment I keep seeing other things and buying them! What isit about Christmas that makes you go "oohhh go on they deserve it" maybe I will try to be less organised next year x just a little bit.

Winter is here.

The cold air is really getting to my lungs at the moment. I ran for a bus earlier and I was shocked how long it took for me to get my breathing back to normal. It's times like this I wish I could drive. I am 21 years of age but I have never done a driving lesson. I can't afford driving lessons so how could I possible afford a car and insurence !? Sucks butt !!  My sinuses are stressing me ever more out in the weather (you want to see what comes out of my nose) gross ! , better out then in lol. I have my sinus appointment in the new year in January. How strange , the new year. That felt strange to say ha. I can't belive how quickly this year has gone. I have nearly done all my Christmas shopping :) , next stage is the wrapping , I hateeeeee wrapping presents , if I can get away of not wrapping a present I will (just stick it in a christmas bag and sellotape it up) ha. 

This Christmas I am going to my aunties which I am excited about. To be round family. I'm kind of gutted I most likely won't see jack on Christmas Day, he will be with his family understandably , but I look forward to the day we have our own christmas and our own family with traditions 😊

Overthinking & ovulating.

So if you are a guy you may not want to be reading this , it's all about lady things. Ha.

This has been the first month of my trying out my ovulating kit. I have a phone on my app that told me when I should start testing and when I should be ovulating. (But because of my polocystic ovaries I thought i wasn't going to ovulate at all, & if I did it wouldn't be when the app said I was going to ovulate) 

To cut along story short, I am ovulating , i ovulated when the app predicted (give or take a day) and to top it off I started my period the week it predicted (again give or take a few days) but I am so excited. For the first time in 21 years I have had a "normal" cycle , and I found out I do indeed ovulate. (The way I feel you would swear I have just been told I am a super hero) ha. But I am relived. It's another step in the right direction. I am going to continue to write down my cycles and when I ovulate. And hopefully go back to the gyne in 6-8 months and show him my findings :) , at the moment we are not proactively trying for a baby. We want to move out and hopefully get married. Then that can begin. 

At the moment my cf is steady , I am working hard on trying to keep my lung function in the high 70s and even hit the 80s. That would be amazing. It's horrible to feel under presure with situations in life just because of my cf. But for now I am keeping possitve and keeping my button off the fast forward button! 

Trials and tribulations.

So the last month i have been doing a trial for a anti-inflamatry drug for my lungs. While i was doing the trial i had to stay in hospital for abit , which was a blessing really because i was suffering from really bad migraines, after ct scans i have been told i have sinusitis. They said my sinuses are really blocked but because i was on the trial there wasn't much i could do at that point. They gave me sinus rinse and a nasal spray which has helped the headaches abit. But i am hopefully going to have surgery   so they can unblock it all.

I thought having to stay in hospital for abit would be good for me , as i haven't had ivs in about 5 years now (and never staying in the adult side since transitioning) i was positive it would make me less nervous if i did have to go in for ivs soon. But if anything i think has made me more nervous , since my last ivs i have had my port removed and my veins are so so terrible. This time while i was in hospital they had to take bloods a lot so they put a canular in , but because my veins are so shocking they only lasted a few hours and then stopped working. So i have been told if i need ivs again in the near future I'm most likely going to have a port re fitted. I was climbing the walls this time in hospital and i was only in for three days , then home for a few days then back. I just kept thinking how do my friends do 2-3 weeks.

Because of the trial i have to be using two forms of contraception for up to three months after the end of the trial. I have also been under the gyene for awhile. 

We have stated the ball rolling on the whole family planning. We are not currently wanting a child at the moment , as we both still live at home and we would hope to be married ,but being married isn't the most important thing to me. I feel like i can get married at any time. I feel like if my health worsens the most important thing that can be taken away from me is having a child. Don't get me wrong i really want to get married too, but i feel like i do not need a ring to know jack is going to stay around for along time. Jack has been tested for the cf gene and luckly we have been told he isn't a carrier , so that is one thing ticked off the list and another thing off my mind. At the moment my cycle is all messed up and we are seeing if after a year of being off the pill .... if finally my periods are finally sorting them selfs out as i have polocyctic ovaries. So we both know that getting pregnant is not going to be easy but it will be worth it. I will write future posts on how that is all going.

for now I'm going to say see ya x

So this is what "sick" feels like.

So last month I turned 21 ! , & it was a emosh time. Growing up I always thought i would turn 21, my parents brought me up possitive and to belive id be the oldest living cf. I don't know if it survivors guilt, but I just feel so lucky, overly lucky  , I am 21 years old. I have seen many not make it this far and it's a sad thought , so I am proud and happy that I am one of the lucky ones, still going strong :). I had a beautiful birthday , thanks to my family and friends and my wonderful boyfriend ! These last five years I have been IV free and I have been really well , but after coming home from Mexico I was really sick. So I went to the hospital to see what was going on , iv lost a stone in a week and my lung function has dropped from 76% to 49%/50%. Which scared the crap out of me. My lung function hasn't been that low in a long time , so I am on antibiotics and if I go back to the hospital in a weeks time and I'm not back up to where I usually am then I will have to go in for IVs. Which I will be dissapointed if I have to, but I also have to remember I have had a really good run and I'm not super women , I am going to get sick some times and I just have to work hard to keep well. There is a small voice in the back of my head which is saying "what if lung function doesn't go back up" and what if I go back to being in hospital every three months. I am just praying my "luck" hasn't run out yet and I can manage a bit longer with out Ivs. It has knocked me mentally aswell and physically , my main goal in life is to be a mum (may seem simple to some , but it's not a gift everyone is lucky enough to get) and the way I have felt these few weeks is terrible. My lungs have shocked me , my body was weak. But I am starting to feel much better and more possitive. My family is used to the whole hospital crap, but jack has had the "best" years out of me, he hasn't really seen me sick, I haven't been in and out of hospital since iv been with him. I suppose abit of me is scared if the whole medical road gets tough he won't be able to handle it or think "what am I letting my self in for" if stuff gets bad. In my heart I know he is a strong guy , and if he had any worries he would tell me, but I am not stupid I know it's a lot to take on , "a sick person" but I luckly see loads of Cfs with their wonderful partners , getting married and having babies and moving in. I have felt "normal" & had normality for so long now, it's almost like I forget I have cf , which I know is silly but I have been so well and not been in hospital. I have got rid of my port, my younger life seems like it was some one else's life and not my own. It's strange. I'm scared I'm almost not going to be able to cope with getting sick as I get older , I know how jacks mind works and it's like he sees me as superwomen and I will never have Ivs again and push 3 kids out and be healthy for ever lol. I suppose that's why I love him. I have never seen him look at me like a "sick" person. What ever the next couple of weeks have in store for me I will cope with it. If I have to go in to hospital I will, I have done it before & I will have to do it again lol. It seems so silly , some of my friends are lucky to be at home 4 weeks at a time and here i am worring after not being in hospital for 5 years. I feel like a kid starting high school lol. I am determined to stay well, so I can get married & have babies and be the oldest ever living cf ! Lol. X 

Future thinking

This month, I feel has been then month of death. Some old, some young and some just brand new to the world. I do not like to get caught up with death. But when it is all around you I suppose it's easy to. You start the what ifs, I have always been very possitive when it comes to my cf, I had never seen transplant or oxygen tubes a path I would ever go down. I suppose that's because I have always been so well. Who knows I may be lucky enough to see the "cure" or a mirie drug that's keeps me invincible. I do feel pretty invincible most of the time, and it may be silly but always told my mind I didn't have cf. I know I do have it lol, but telling my body and mind that don't has made me strong I think, almost like the plosebo effect. If you tell your mind you are ill, you are going to be ill. I don't know if it's because I'm xoming closer to my 21st birthday. I am very aware of the ones that didn't make it to 21, and I am so lucky that I will. Hopefully I will also see my 30th & 80th god being good :) x I am not scared of the future, I belive my story has been already writen , and I belive it has a happy ending and will make a exciting read ;)