Friday 20 April 2012

My life as I know it...

My name is Nicole and I am eighteen years old. Those who look at me see me as a normal teenager: happy go lucky, enjoys shopping, going out, goes to school, loves partying and is a genuine girly girl. For me and those close to me however it is a completely different story. Since the age of fifteen I have suffered from brittle asthma type 2 and anaphylaxis. Both of these are life-threatening, life-altering conditions which can be hard to cope with on a daily basis. This is my life; this is my story of living with brittle asthma and anaphylaxis.
I cannot really recall a time where I have not been worried about ending up back in the hospital. It has been 3 long years of continuous hospital visits, outpatient appointments, emotions that I never thought I would feel for many years. I’ve met some amazing doctors, nurses and hospital staff throughout my various visits to the hospital. I have so much to thank them for. The fact that I am still alive is down to them, and that is something I am so grateful for and cannot put into words. They always smile, and are cheerful and just genuinely make everything seem even that little bit better.

On an average daily basis my life can vary drastically and this is dependent upon whether I am ill or not. Sometimes I lead a normal daily life like every other person on this earth. I go to school, go to drama at the weekend, go out partying…but then there are the times that it is the complete opposite. Brittle asthma in particular comes on really without warning. One minute I can be fine, and then the next I am coughing and cannot breathe properly. No one is really been able to explain to me why it comes on so suddenly and without warning, but I guess I could say that I have learned to deal with it in some shape or form. Anaphylaxis on the other hand, is a different story, sometimes there is the warning symptoms, I get a rash, and swell up and know what is going to happen, but then there are the other times when I have absolutely no clue what is going on or what is going to happen. It can be frightening, and most people around me do not know how to deal with it. I am eighteen years old, and yet I tell people that the hospital is my second home. They just glare at me really, give me strange looks and it does not surprise me because what normal teenager is able to say that they spend half of their life in the hospital. I am just guessing but I think in particular this year, I have spent more time in the hospital than I have at school. I have taken the decision to repeat my sixth year of school, in hope that I have a better chance of passing my exams.

I cannot even go on holiday within the UK never mind outwith it without being worried about ending up in hospital. My last few holidays have certainly gone that way. I went to London for five days; two of those were basically spent in the local A&E. I went to Florida in 2009 and 2010, on both of those trips I ended up in the emergency room; in 2010 it was on two occasions. It makes me feel like I ruin everyone’s holiday, even though I know it is not my fault, I can’t control when I end up in the hospital, I still feel like I make people’s lives even just that little bit harder for them. I hate not feeling in control of a situation, and that’s one of the main things I can’t stand about my asthma or allergies. It’s the constant emotional strain, the worry, the fear, everything that comes along with it. Life in my opinion was never meant to be easy, but this is ridiculous.

Sometimes I feel normal, but other times I feel scared, I feel upset, I feel like I do not know what to do with myself. I love the person I am, what I do not love however are my conditions. They take over my life at times. I have had to learn to read food labels carefully, because it is not the simple things like nuts I am allergic to, no I did not get off that easily. I am allergic to really weird and wonderous things such as: ginger, maple syrup and pears and there is more where that came from too. Taking tablets has become a very important part of my daily routine as well as my three nebulisers which help to open up my airways. Without these, I do not think I would be able to go through the day as well as I do. I would find it a struggle, whether it be I have a random allergic reaction which has happened before, or be it I have an acute asthma attack which of late I seem to be having a lot of. For me, it feels like it is getting worse and worse. I seem to be spending more and more time in the hospital particularly A&E. I go at times and it is not too bad, my mum takes me by car, or out of hours refers me and I am not well but at the same time I am not scared of dying because I know I have been worse. Then there are the times when I go to A&E and it’s a blue lights and flashing sirens ambulance all the way to the hospital, then taken into resuscitation where they try to make me better. That is when the fear of just how life-threatening my conditions are comes into play.

Out of everything that I have been through with my condition, I have to say being put in intensive care was the worst thing I have ever been through. I was in the hospital with an asthma attack, and ended up having an anaphylactic reaction. The staff were somewhat clueless about what to do, they grabbed the adrenaline that was on the crash cart and put it into my I.V. There is only one word to sum up what that made me physically feel like and that is weird. I kept calling out “I feel weird, I feel weird” then I felt sick. After being sick I felt so much better. Then ten minutes later, it all came back. I gave myself my epi pen, and it did not come back after that but as a precautionary measure, they sent me to the intensive care unit to be monitored overnight. I got there, and I felt like I should not have been there. So many really ill people on ventilators be they awake or sedated surrounded me and there I was just on nasal prong oxygen. I felt as though I was wasting their time, taking up a bed. I spent the whole 24 hours I was there wishing I could have been sedated because I hated all the illness that surrounded me. I just wanted to go home, hospitals bad enough to be in but when you are taken to a critical care ward that is where the line is crossed.

I don’t know what the future holds for me if I am completely honest. No one is sure if my health will improve, or get worse or just stay at a standstill, not even the doctors. Some say they are baffled by the presentation of my conditions, and really do not know what to do to help me. School is hard enough with my absences, so how will university be? What about getting a job? I have no idea if I will ever be able to hold down a fulltime career. My health has stopped me in my tracks with a lot of things. I had to give up my dream job of becoming a paediatrician because I do not have the exam results for this due to ill health, and I could not take chemistry because I was worried about being allergic to some of the things in experiments. I gave up the hope that one day I would be able to achieve this as soon as I found out how much my health affected me. My ambition now is to be able to go to university next year. I have a few career choices in mind, a lot of them centring around children, I just hope that my health allows me to achieve one of these. I want normality in my life, for me it’s too topsy turvy and upside down. I would not give up the person I am for the world but I just wish that sometimes I could lose the health conditions. Without them I think life would be so much simpler.

I think that the hospital staff all do an amazing job of helping me whenever I am in hospital, but sometimes they give me mixed messages. For example one doctor may say I should be kept in the hospital another feels I should go home. The same applies for the medication I take, different doctors have different opinions and tell me different things, this in turn impacts on the way I go about life with my conditions. At times I am clueless as to whether or not I should be going to the hospital at a particular moment as I feel at times I am just wasting their time and there are people much worse off than me. Something I feel that would really benefit me when I’m in the hospital is if I am not given mixed messages as my conditions are confusing enough but adding doctors with all sorts of opinions into the mix is not much fun.

Despite all the negatives there are a few positives to my conditions. Throughout everything I have been through and go through I have learned that life is too short to take for granted. I make much more time for my goals and ambitions in life to try and ensure I achieve them as my health has gotten in the way of many things I have tried to achieve in the past. I feel like I am a better person through all of this, it makes me a much stronger person overall. I cope with things better in general because I know that I’ve been through a lot worse. If I don’t manage to do something I don’t beat myself up about it anymore, because I know that I’ve tried my best and put all of the effort I could into it, particularly if my health has gotten in the way of things. My health may define what I do every day in life and the way I do it but I have never and I’m not about to let it define who I am as a person. 

Saturday 17 March 2012

My boyfriend Stewart :)

I've written a few posts about my boyfriend so I thought I'd write a full blog post on the story behind how I met him and how we ended up together. It's no extra ordinary story, but it's one which will stay with me forever.

During my school holidays I volunteer with something called special needs playscheme. This is something which provides day playschemes for children who are aged 5-16 with any range of special needs. I started doing this in the summer of 2010, and continue to do it as I find it an extremely rewarding and fun experience. In October of 2010, I was at the playscheme for two out of the four days as I was going to Florida on the thursday of the week. There I saw a boy, who I thought was nice looking, but as I'm quite shy when it comes to talking to people I never went up to him or talked to him. Through someone else I found out his name was Stewart, so I was very keen to add him on facebook when I got back from my holiday. Trouble was when I got back, I found out that he had started going out with a girl, my heart sunk slightly but I didn't make too much of a big deal out of it as I'd never even talked to the guy. To be friendly I added him on facebook, he accepted and we sent a few messages to each other. I gave him my msn and phone number and we texted each other that night. Due to his girlfriend being unhappy with the amount of contact we were having I stopped making contact minus the occasional "Hi" or "How are you?".

December 7th 2010 is one day I will never forget. I was on facebook and noticed that Stewart had commented on one of my pictures. 
The picture is of me and a few friends when it was one of my friends birthdays, I am the one on the far right. He liked the picture on facebook and commented "you look very pretty in this picture Nicole :) xx" I smiled when  I read the comment but thought at the same time..."Ummm what if she sees that?" He started talking to me on msn later that day and he told me he'd broken up with his girlfriend, I smiled a lot then. He cheered me up a lot that day, because the day before I'd found out my dad had died. We ended up getting married on facebook as a joke and talked on msn a lot and through text. Eventually he asked me to phone him, so at 11pm one night I phoned him and we chatted on the phone for 4 hours or more. I went to sleep with a smile on my face really happy. As it was near to christmas we decided that we weren't going to meet up until after the year had ended as that would be the most sensible option, but still we continued to talk on the phone and talk on msn to all hours of the night. Once I woke my mum up at 2am talking to him on the phone so that didn't go down too well! The new year came and went and he asked if I was able to come to his birthday party. I of course did not hesitate when I replied yes. His birthday was 6th January 2011, when he turned 17 and he had his party on 8th January 2011.

The 8th of January came and I got my hair and makeup all done for his party. I wore a black vest top, shorts, black shoes and black tights to his party. We had an amazing night, and that was the first time we had properly met so it was a really special night. I got to meet his friends and later on even his parents who seemed nice. He told me that he loved me that night too, I couldn't stop the smile from being on my face. I just felt amazing.

That's the first picture ever taken of us, back in the day when he had long hair! I became his girlfriend that night and since then I've never looked back. I've loved every single moment of being with him and I wouldn't have changed any of it for the world. We can talk for hours on end and never get bored, we can spend every minute of the day with each other and never get tired of seeing each other. He makes a lot of sacrifices where my health is concerned. When I thought I was allergic to peanuts he gave them up for me, he wouldn't eat them the whole day. I was going to his house once and him and his parents had eaten lobster and I was coming the next day, he scrubbed his house top to bottom because he thought I was allergic to it when in reality I'm not. He's phoned me numerous ambulances and always come with me to the hospital if he's been there. He nags me if I don't take my 3 daily nebulisers or medication, I find it amusing though and I'm happy he looks out for me. He's the only person who I can rely on 24/7 to be there for me, no matter what time of the day it is. He's always happy to see me. He's always my shoulder to cry on and just holds me tight when I'm upset. He makes sure I'm okay if we ever go out, and always checks the ingredients of the food he eats if I'm around. He can make me smile even if I'm close to deaths door, he holds my hand, kisses my head and tells me he loves me, that everything is going to be alright which is more than I could ever ask for. He makes me laugh until I practically wet myself. He's really smart and always gets amazing results in whatever he do be it his driving test, his exams or work. He always buys me presents which make me smile, and knows how to make me happy. He's the most honest person I know, he never lies, never cheats and is constantly loyal. He forgives but he never forgets, he says some of the most adorable things and is the only person who can talk me out of being grumpy. He understands I have problems but it doesn't bother him, he loves me for who I am and I think that makes him someone really special. Not a lot of people would stick with someone who's ill a lot of the time, particularly when you're a teenager and can run wild, but he does it regardless of what anyone else thinks. He loves me for who I am and that's something I never thought I would ever have. My life is far from what is classed as normal but I don't care, as long as I have Stewart in my life I could not be happier. He is everything I ever dreamed of in a guy and more. He is perfect not only for me but to me in every single way and nothing anyone could ever say would change that. I don't know what the future holds but I know that there will always be a place in my heart for him, he will always be my first true love and the first boy to have stolen my heart :)

Friday 16 March 2012

My birthday, valentines day and a general update :)



Well the big day came and went! I turned the big 18 last thursday, my party was saturday and I am happy to report that I was well and healthy for both of them. Got a bit worried that I was gonna be ill for my party though because loads of people around me seem to have this cold/flu type virus that's going round. So far it seems to have skipped me *Fingers crossed* I really do not want it! My birthday was amazing :) Me, my mum, her boyfriend and my boyfriend all went for a meal at the hard rock cafe. It was lovely food, too much though I was stuffed afterwards! I also had the joy of getting to have two sex on the beach cocktails, and I even got to have a special glass that I got to keep :D. I got embarressed though cause my mum had brought a cake and it was brought into the restauraunt and everyone had to sing happy birthday to me and stuff while I was standing up cringing :L. My boyfriend then spent the night at my house which was lovely. I got some lovely pressies too! Wine and my favourite perfume from my boyfriend, I only wanted the perfume though and wasn't impressed when I got the wine too! He does know my tastes though and got me rose wine instead of red wine, I personally think the stuff is gastily! My mum and her boyfriend got me my party, the meal out, photo albums, photo frames, a wee teddy, a money box, socks with special 18 year old on them, an 18 key thing and loads of balloons and stuff. It was a magical day and I was really happy to be well for it. Saturday was my party and that was loads of fun too! I got my hair and make-up all professionally done, it looked amazing. I had a new gorgeous dress and shoes and a bag too. About 70 people came to the party and we all had a great night. I was up dancing and giving it my all. People kept buying me drink and I was a bit worse for wear slightly. The party finished at 12 and I was up for going up town. So at 12:15 me, my boyfriend, his cousin and two of my friends wondered to the 24 hour tesco to get change for the bus. We got on the bus at about 1am and headed up town. Both my boyfriend and his cousin are at uni so I went with them and we went to one of the student bars until the back of 2 in the morning. We left and I stayed at Stewart's uni flat.

I wakened up at 10am after falling asleep at 4am realising I'd been an idiot and forgot to take my morning medication with me so I had to rush home and take it. I then proceeded to open my pressies that I got from the party. There were bags full of them! Altogether I got £390 in money, a HMV giftcard, a new look giftcard, make-up, 2 bottles of wine, champagne, a personalised champagne glass, slippers, photo frames, jewellery and teddy bears. Stewart had forgot his bag at the venue so it was in my house, he came later on to pick it up. We played table tennis and chatted. I ended up going back with him to his uni flat, we got domino's pizza with potato wedges, coke and wine. I was standing in Tesco with him and obviously got I.D'd for the wine and so did he. They accepted my provisional driving licence but questioned his real driving licence. I was confused at that. We went back to his flat, ate pizza and potato wedges, drank coke and wine and watched a movie called monster house. It was a really nice night. 11:30pm we were just getting ready to go to bed and me being clumsy me smashed a wine glass so I had to hoover it up at 11:30pm at night, at least all his flat mates were awake!

Valentines day was a really special day. This is the second valentines day me and Stewart spent together. Last year his present to me was a hotel room for the night, dinner and he also took me to the cinema. This year we spent valentines day in his uni flat but it was still equally as lovely :). He bought me champagne, which we both drank and it was gorgeous and I'm not the biggest fan of champagne at the best of times, he also got me a single red rose, an adorable teddy bear which I sleep with every night now, two boxes of maltesers which were extremely yummy to eat :D and he also bought me the most gorgeous card ever, which is now on my wall in my bedroom. We went to Marks and Spencer and bought what we were having for dinner which was: steak, mushrooms, onions, a sauce for the steak, tomatoes and also chips. Stewart made it because I can not cook to save my life and it was delicious :p. We drank the champagne, he also had red wine and we had a bottle of bucks fizz earlier on. He may have had a bit too much to drink as by half past ten at night he was asleep and that was my hopes of watching the inbetweeners film together destroyed. He woke up at 5am confused to as why I was sleeping on the floor :L He let me back in the bed then :P. The next day so the 15th we went for coffee and a meal with his parents and we ended up staying at their house. The meal was beautiful :) We went to a restaurant called the slug and lettuce, and I had some wine which tasted of strawberries and was really nice tasting. We shared nacho's with chilli concarni as a starter and for my main course I had fish and chips which tasted beautiful. We had a really great night and a beautiful meal.

I woke up at 8am this morning and went to the doctors. That was fun! I have co-codomal tablets now on my repeat. I am also on a medication for my essential tremor which I feel has gotten worse so everything seems to be looking up at the moment. I got my school report through too, my attendance is 60.66% so a lot better than anyone had hoped for including me. I've not been in hospital for a while so *touch wood* I don't end up in for ages now. I went to see my consultant on Monday and that went really well. She changed one of my medications as my essential tremor medication was interfering with it, she also advised that I start to go swimming, so when the swimming pool near to my boyfriends uni flat opens, we are going to go swimming together which shall be good. Not only is it good for my lungs but it's good exercise too. She's also sending me for breathing tests too. I'm going for a bone scan too as the constant steroids may have damaged my bones. Overall everything looking great, my boyfriend and me are better than ever, my healths looking up and even school life is improving, so it's an uphill climb now :)

My father...

This post is going to be different, it's about something other than my hospital admissions. It's about the one thing that completely changed me as a person, broke me into pieces and the one thing that I will never fully recover from. Despite health conditions until December 2010, I was a happy teenager. I had friends, a loving father and mother and a great life. 6th December is when all of that changed, when the ground was almost taken out from under me and I was left with nothing. 6th December 2010 was the day my father died. It's a day I'll never forget and for all of the wrong reasons. It was like any other day, I was at school and nothing extra ordinary happened. It was really bad snow so I had to leave at 11am to go get the bus home so I would be able to get home. I phoned my dad and we arranged to go Christmas shopping on the Wednesday. We talked on the phone for a little bit then said goodbye and I went ahead with my normal day, oblivious to the fact that it would be the last time I'd ever hear my fathers voice. That day was normal. I remember being in my bedroom watching Corrination Street, it was the day of the tram crash so it was an hour long episode. I remember the police coming to the door and weirdly enough I thought they'd come to arrest my mum. I walked downstairs at one point and my mum walked out and asked if I had any of my dads brothers house numbers, I didn't think anything of it and said no. I went back upstairs and shortly afterwards the police left. My mum came into my bedroom and asked me to switch of the tv, I did so and she sat down. She simply looked at me and said "Nicole, I don't know how to say this so I'm just going to say it. It's your dad, he's dead." As soon as she said that sentence my eyes flooded with tears and I screamed no over and over again. I couldn't quite believe it. I didn't understand how he could be gone, he was fine earlier on. My mum told me he'd been found on the road and a veterinary nurse tried to perform CPR but it was too late he was gone. An autopsy revealed that he'd died from a heart attack which killed him instantly. He'd been ill since 2001 with kidney failure and was on dialysis. He'd had hope with a transplant once, but when they tried to connect the kidney unfortunately his nerve endings were too dead so they couldn't connect it, sometimes I ask myself if he'd had that transplant would he still be alive today? It's been hard living without a father. Sometimes I feel okay then other times I just break down and feel I can't cope. I still have his house and mobile number in my phone and the amount of times I've gone to phone him then suddenly remembered that he's gone and never coming back. I remember being angry at my father, for leaving me. I couldn't understand why it had to be my dad. At his funeral I read a poem that I had written. Here it is:

He walked your paths,
He lead your life,
He did it all just for you,
He did it all the right way too.
Tears of unhappiness won't bring him back,
Dozens of memories that I seem to lack,
Thinking of him like he has just gone,
Not really gone but gone to sleep,
Tired of living not tired of sleeping.
If there was any way to bring him back,
I'd be on it in an instant,
Any way to wipe my tears,
The tears I cry inside then I'd find it.
I wish a million tears would bring him back,
But they can't and that's a fact.

R.I.P to my father, George Gray, forever in my heart <3

Sunday 4 March 2012

Today's a good day :)

I've just realised how much I've neglected my blog of late and I do apologise for that. So here's an update on me.

Since the last time I wrote I've ended up back in the Royal a few times. Both with asthma and anaphylaxis. I'm not sure what caused the anaphylaxis but obviously something didn't agree with me. It's often frustrating when that happens, when I don't actually know what caused my hospital admission. I was kept in with each one. There was asthma, then four days later there was anaphylaxis and funnily enough, it was the same A&E doctors that treated me. The main one, she could tell that the anaphylaxis was different from the asthma. I didn't take my adrenaline before I got to the hospital so they gave me a lovely injection of adrenaline into my thigh...that wasn't too fun. I can't really remember it happening though, but I was told later I tried to hit the nurse when she came near me with the needle, it's never a good thing to do when you've got a needle half in and half out of your hand. I felt really bad when the nurse told me that so I apologised a lot but she just laughed it off and said that she would have probably have done the same if she had been in my situation. I can't remember much of A&E from that time...my boyfriend and his mum were in the hospital and I can't really remember them coming to see me, which they did. They said that I kept falling asleep...it does take a lot out of you though so they don't blame me for falling asleep. Since then though there's been no more admissions. I'm still on steriods at the moment, down to 20mg a day, reducing by 10mg every 3 days until I am off them so not too long to go now. It's just a waiting game really, just waiting to see if this time I can avoid hospital for longer than a week after coming off steriods, which I hope I can.

I aim to update everyone soon about how I'm doing, but today is a good day and I'm just relaxing at my boyfriends house :) xxx

Friday 27 January 2012

Conversation with boyfriend gone bad...

Well I had a not so great conversation with my boyfriend. I told him about me repeating sixth year and he came out with "I'm going into second year uni...I don't want a girlfriend who's still in school." It breaks my heart to know he feels this way. I wish he didn't and I wish more than anything he would understand why I am doing this. I don't think he's going to break up with me...I sound so childish I know but in the end my boyfriend is my world. He's my sun in the cloudy sky. He makes me smile when no one else can. Whenever I have to go to hospital, he holds my hand a lot of the times and it makes me feel safe, no one else can do that. It's not so much my boyfriend I am worried about loosing, it's my best friend...He's one of the only good things in my life. My health isn't great and he's the only one who can make me feel better about being ill. No other guys understand, not many people do but it was so hard to find a guy who understood and accepted me and loves me. I can't loose him, he's  my world and I cannot loose him over something which is out with of my control. If it was up to me I would be sitting my exams this year, but in the end what's the use? I've missed over half the year of school with inevitabley more to come...What's the point in setting myself up to fail more? I was under so much stress and pressure and I just need him to understand that. I know people say teenagers don't know what love is...but this isn't just a stupid crush for me, this is the real deal. There is no age limit on love, it exists and we feel it and know when we feel it. I love him so much and cannot accept that I may loose him. I can see him in my future, I cannot see past him. I just wish for once in my life something would actually go right rather than everything just going down hill. I feel like I'm letting him down, he wants me to go to college but I just think (although I haven't told him this) that the stress and pressure of having to move to somewhere unfamiluar will just be even worse than the stress and pressure I am under now. I want to be like everyone else in my school and be able to sit all of my prelims in the next two weeks...but I can't be and I've come to terms with that. I'm sorry for babling on and on but I do feel better just getting this all off my chest. I'm just typing, not really aware of what I'm saying anymore. The words are just spilling out onto here and I have no control over what I am saying. I'm doing this without thinking really. I like doing this because it's how I really feel and it's better than thinking about it because in the end I can get much more off my chest than if I were to think about it.

Feeling a lot more positive :)

Since my last post I've been in hospital again, luckily though it was only for one night and I escaped the following day. I'm still on prednisolone, a reducing dose that will hopefully work this time. Instead of them leaving me, telling me to stop taking the 5mg after 5 days they're now trying reducing by using 2mg for 5 days then 1mg for 5 days. So far it's worked, there's been no hospital visits, so *fingers crossed* that I won't have any for a while. It's my birthday in less than a week, February 2nd. My big 18th, needless to say I'm really excited. I think turning 18 will give me more confidence because I can go out to pubs and clubs, where I don't have to drink a lot if anything and just have a good time with some friends and meet people.

On a different note, I'm repeating this year at school next year. I feel so relieved that my school's letting me do it, it's taken a lot of the stress off me. I feel better about my exams now that I don't have to sit them for another year. We were meant to have prelims next weeka and the week after, I am still sitting one of them for practice, modern studies oh how fun! The rest however my teachers have agreed that I would be better at home catching up with work. I told my boyfriend about my plans to repeat this year at school and let's just say he was less than impressed. I don't think he fully understands how much the pressure and stress of having to study for four exams between numerous hospital visits was getting to me. I don't think he sees my reasoning behind sitting my exams next year and doing my highers over two years. Yes it's true, I will be 19 when I leave school and it's like I'm holding onto childhood or whatever, but in the end I would rather do that than be under the constant pressure and stress I was under. I hate failing at the best of times and at the back of my mind all I could see was fail. It makes me feel like a failure when I don't understand things in class, but that's understandable. I'm not a perfectionist but I hate getting things wrong and failing, that's why I took the decision to repeat this year at school. I feel that it will make me feel a lot better about my situation and that it will benefit me greatly. True it's not the best of choices and I don't want to repeat a whole year at school, but sometimes we do have to do things that we don't want to do. Good things come to people who wait and I think good will come out of this situation.

I have an appointment with one of the head respiratory consultants on the 6th of February, hopefully they will be able to come up with some solution that will help me with my hospital visits. It's horrible when it's something that's out with my control. I try to be strong but sometimes I just get scared and break down. I will do whatever it takes to pass my exams next year and remain well, I'm not just going to sit back and let my illness rule my life. I am defined as me, Nicole Bridget Gray. A nearly 18 year old girl who enjoys life, likes to have a laugh, loves hanging out with friends, loves her boyfriend to pieces, enjoys watching the stars in the night sky and generally likes to smile and laugh. I am not defined by asthma and anaphylaxis! I can beat this :)

Friday 13 January 2012

Things are looking up

I've not written in my blog for a few days so I thought that I'd give everyone a bit of an update. I went back to school yesterday, it was my first day back after christmas and it went well. Schools just school in the end but I'm a bit of a geek where it's concerned and actually enjoy the thrill of learning, so you can imagine what missing school all the time does to me! My lungs are at bay and under control at the moment, there were a few moments of weakness though and it's not been an easy road to recovery this time rounds. There's been tears, a lot of nebulisers, the thought of dying and of course the constant black cloud of unhappiness that being ill brings with it. Luckily so far I've not ended up back in hospital. I just touched wood and had my fingers crossed when I said that as it's friday the 13th, the day that's meant to be unlucky but I just hope it's not for me. I've got my friends 19th party tomorrow and I really want to make it! She's hoping I can and so are other people going cause we've not seen each other in a while and this will almost be like a reuinion for us all. We're off to pizza hut, then the older people (18+) are off out clubbing so I'm just gonna go home :). I'm really looking forward to turning 18, I think it will bring my confidence up because it means I can go out and meet other people at clubs and stuff. Am I worried about my health? Yes very much, I'm worried I will go over my limit of drink and pass out or do something stupid when under the influence like eat something I shouldn't then try to administer an epi pen...I just hope everyone knows when to dial 999. I will try so hard not to get to that stage though, I'm making sure that when I go out I'm with at least one person who knows about my allergies and asthma and knows when to phone me an ambulance so I think I'm okay where that is concerned. I can't really remember the last time I've properly been able to go out and act like a normal teenager. I once went out and realised I'd forgotten to bring my epi pen, my friends were like just leave it but I had to go home and never bothered going back out as it was too late. It's something I know I will have to deal with for the rest of my life and I think I do deal with it as best as I can but sometimes I just feel like it's too hard to cope and I break down. They mostly do occur when I'm in hospital but sometimes they happen out of the blue in random places with no apparent means of trigger for them. The world can be a scary place at times, and I know that all to well. It's scary enough for people who don't have ill health but I think the realisation that I could die is what makes it a scarier place to be in. I've applied to five different universities for next year, I'm also applying for college too but I'm hoping that by May when it comes to sitting my exams I get good enough results. They are all aware of my bad health and some even give consideration for it as my schooling has been severely disrupted. I'm trying hard not to get stressed out and just cross the bridges that come to me when they come to me rather than thinking ahead and getting really panicked and stressed as that's definately not going to help! Life has thrown a lot at me but I am ready to face everything else with a happy word and a smile on my face :)

Monday 9 January 2012

Rays of sunshine charity :)

I dunno if anyone reads this but hey ho! Here's another update from yours truly me :)

Good and bad news, first the bad news. My lungs are playing up again, nothing seems to be going in the right direction at the moment. I'm still on steriods yet it's really not helping, my peak flow is down from 500 to just 250 and below. I've had 3 nebulisers in the past 2 hours, not healthy or normal but I'm living, just trying to put off a hospital visit for as long as I can. I've only been out since friday and quite frankly I do not wish to go back in there anytime soon, but the reality of everything is it's inevitable so I'm just trying to make the most of what time I have out of hospital and not take life foregranted. Brittle asthma is what they say I have...type 2, not that it makes much difference it is what it is, a severe and uncontrolable form of asthma. I hate to say it but I'm scared...I'm even more scared of dying than before. I'm scared I'll never get to do everything I want to. I feel like I've set myself up to fail with university and everything, I know in my heart I won't get those 4 exam results I need this year because I've been too sick. I went to the doctors today because I thought I had a throat infection as I have little of a voice. She looked but couldn't find infection, took a throat swab and told me if there was little or no improvement to phone back on friday to arrange an appointment where she will phone the ent's and get me an appointment to have a larengescope. It's a camera down your throat. I've looked it up on wikipedia and I can say I am in the horrors and have stated I want sedated for it.

The good news now, just so it's not all negative. My mum has applied to the rays of sunshine charity for me. It's a charity which grants wishes to children aged 3-18 who are living with life-threatning or life-limiting conditions. She's applied because she thinks I deserve happiness from the hospital. You had to choose 3 wishes that you would most like to come true, the ones I did choose were: 1- to meet j.k and maybe some harry potter cast members or go to the harry potter experience in London. 2- To go to where casualty is filmed and maybe meet some cast members and 3- to go to where grey's anatomy was filmed and maybe meet some cast members. We are unsure if I qualify but it's worth a try. :) I will keep you guys updated but for now I'm good

Love and peace
Nicole

Friday 6 January 2012

Hospital must have missed me (1/1/2012-6/1/2012)

I've not written in my blog for a few days now so I appologise for that but unfortunately the hospital seemed to miss me too much and I had to go back in. 1st January 2012, a new start for many people, a time when they make new years resolutions. I myself made one...I'm not going to hospital for a while...Well that lasted the best part of about 19 hours. I was fine then the coughing started. I upped my nebulisers but as usual it was no use and I had to phone my mum to tell her I had to go to out of hours at 11pm. When I got there, saw the doctor he immediately phoned 999 for an ambulance and put me on a neb. The ambulance came and I was blue lighted all the way up to the hospital. I spent about the best part of 5 hours wheezing away, nebulisers wouldn't stop it, I was getting so fed up. Eventually the wheezing stopped and I was transferred to a ward at 3am. What a socialble hour indeed.

I fell asleep for the best of an hour and got a wake up call from a doctor at 4:30am. I was going to go mad until I noticed how good looking he was so I grinned and beared it :). I got transferred to my usual ward of 204, respiratory at about 12am the next day. I seemed to be improving but as usual with me nothing ever goes the way I want it to.

Custard...yes you just read that right, I was nearly killed on 3 occasions by custard...I mean come on...I ate my dinner, ate my 'lovely' pudding of custard then ten minutes later there was a lovely rash all the way up and down my arms...

Then it was the inability to breathe, take the epi pen and onto the oxygen. I do of course rock the look as you can see in the picture below :p.

So after all that lovely commotion had happened you'd think I would at least get a good nights sleep? Wrong...On two occasions they had the ICU doctor, the anastethtic doctor and the head consultant of respiratory down thinking if they were going to transfer me to ICU in nature of my reactions. After a lot of needles, shots of adrenaline and nebulisers I eventually settled and began to feel better.

To cut a long story short, I eventually did begin to get better and even though I'm not 100% I am home now, very happy to be home at that :)