Guest post: living with brittle asthma and anaphylaxis – Nicole

[editors note: I’d like to thank Nicole in advance for this guest post about her life with brittle asthma and anaphylaxis. I hope that this will help people understand the severity of asthma and will appreciate how much it impacts on Nicole’s life.]

My name is Nicole and I am nineteen 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 4 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 nineteen 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 full time 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 pediatrician 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 centering 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.

[editors note: once again thank you for helping raise the awareness about asthma Nicole!]

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2 thoughts on “Guest post: living with brittle asthma and anaphylaxis – Nicole

  1. Hey Nicole I can really relate to your experiences I was 20 when I had my first near fatal asthma attack and was diagnosed with type 2 Brittle asthma about 4 years later. I am in my 50’s now. I have visited a&e departments across the globe and currently live overseas.I make sure I have an up to date emergency protocol drawn up by the specialist Brittle asthma consultant that I am under.This tells emergency medics where ever I am home or away what they need to do in an emergency. I have yet to know anyone refuse to follow it and it has thus far served me well. I have an amazing husband and 2 wonderful sons. There are many things in life I haven’t done because of my asthma, but there are so many things that I was told I couldn’t or wouldn’t do. Living with Brittle asthma is tough, but as I believe and it has been tested a few times…..”What don’t kill me can only make me stronger” Stay strong hugs!

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