#aukcarASM15

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The last few days I have been down in Manchester at the Annual Scientific Meeting for the Asthma UK Centre for Applied Research. It was a great few days. all kicked off by an entertaining dinner with the centre director and post grad and network co-ordinator who learnt the value of Twitter and what you can do with it. It was with delight that one member found they were my top media tweet and wanted to retain this title for the whole meeting. (no one really knew what top media tweet was but battle had commenced).

I was particularly excited about the meeting for two main reasons because I was co presenting about @SPEAKAsthma and also I was going to hear Prof Iain Pavord talk who is in my eyes the asthma guru and brought Bronchial Thermoplasty to the UK. Listening to him talk was amazing. It gave me a renewed sense of hope that there were different treatments coming out for asthma, namely Mepolizumab. His different views on the use of oral steroids was interesting as I had always thought steroids would treat all aspects of asthma but now I know otherwise. It does make me question the role of oral steroids for myself. I have never been convinced that they are as good as medics make out. It will be interesting when I am next in clinic brining this information I have learned. Prof Pavord also knows my consultant and spoke highly of her. I think highly of her but that is because she has helped me so much, but when you get the top guy in asthma saying your consultant is good, she must be good.

Our talk about @SPEAKAsthma and a new project was great and we were able to show our recruitment video and a flipagram that we put together. I did get a bit nervous and stumbled over my words sometimes but I think the PPI Research Fellow I was presenting with caught my bad bits and saved me.

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Otherwise the meeting was good. It was different this year from last year in Oxford. I was very new last year and really didnt know many people but this year I have had the chance to work with a lot of people and met them over the year. This year we also had a big PPI presence as there were 7 of us attending. The great thing about the meeting and the centre is that they value PPI input so much and are really inclusive of it. There is no one who didnt make us feel welcome. Even at breakfast and  other meals they would stop conversation and welcome us and speak to us wanting out advice and input on their various projects.

There is so much to talk about in the meeting and way too much to put down on paper but my titter feed sums up the meeting as I tweeted throughout it. If you want to see go to @just_TUX to see my tweets.

The second day was really frustrating for me. It was really interesting but I couldn’t contribute as much as I wanted because I was up most of the night coughing and feeling really tight chested. It was horrible. I was determined not to let people know I didnt feel great but by the end of the day I felt exhausted and the effort of breathing was so much. I am really annoyed at myself for pushing through and not just excusing myself and resting somewhere. I have this bad mentality where I won’t let my health stop me doing things at any cost. By the end of the day at the train station on the way home I didnt have the energy to hide how I felt anymore and had to just sit on a bench and try catch my breathe. Once on the train it was impossible I felt slumped and had my neb. I must have appeared so anti social but I was spent and on empty. It was such a shame as the end of the last meeting was such a high and the train journey on the way back was full of chatting and discussing different things we were going to be doing in the near future.

I am really looking forward to the next few months. There have been lots of different projects that people want PPI input for and also the SPEAKAsthma group to which is exciting as they are still really new so the group is only just starting out but it bodes well if people are keen to speak with them and also have a group set up in London too!!! The future is looking good for SPEAKAsthma and PPI!!!

A mutual understanding with Asthma UK

A while ago I posted about how angry and disgruntled I was with Asthma UK. They had taken the decision to close their offices in Scotland, Wales and Northern Ireland. To say I went off the deep end would be a small under statement. I felt hurt as it was the Asthma UK Scotland office who effectively without knowing changed my life around. You can read my blog post here 

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But now I feel I need to post with where things are now. The offices have closed but after the weekend in Manchester and meeting with people from Asthma UK at various different events over the past few weeks it has given me the opportunity to speak to them about how I feel and where everything is going.

I think and I hope Asthma UK believe we have a mutual understanding. I am very upset that the office had to shut but now understand why they had to do it. The economic climate in the UK is not favourable for charities particularly small charities like Asthma UK. I had not appreciated the cost in running a charity and having offices in outlying countries. It is extortionate. A charity which generates on £9 million a year for a condition/ disease which effects 1 in 10 people is shocking and there is no wonder why they struggle to do all they want for asthma and those who have asthma. Until yesterday I never realised the KICK Asthma weekend I went on when I was younger would cost £20K just to put that on. These are figures you don’t see. I took Kick Asthma for granted- I got so much out of it but never appreciated the work that went into it and the running cost.

The opportunity to speak to various different people from the charity was really beneficial. They reassured me that Scotland would not be forgotten about and they will look after Scotland. My understanding is that there were more than just me who were upset but I hope that the energies of those who are upset can be used to the positive and be the people in Scotland to raise the profile of asthma and Asthma UK. I want to make sure that Asthma UK know what is happening in Scotland and in doing so this may generate more income and enable Asthma UK to have an office in Scotland again.

What we need to be aware of is that there is nothing to be gained by being annoyed or upset at what has happened as it is now fact but use this and change the situation to the good. Put asthma on the map and it may put Asthma UK back in Scotland with added income and resource. By understanding the whys I can clearly see there was a massive gap in resources- I am still sad and always will be but I can’t let this sadness cause a rift between me and Asthma UK and therefore be detrimental to all aspects of asthma awareness etc as I want to continue in doing all I do and maintain a good relationship with the charity.

I am very grateful for having the opportunity to speak to various members of the charity over the last few weeks and hope others can join with me in Scotland and continue to support Asthma UK.

Patient and Public Involvement aka PPI

Our Patient and Public Involvement (PPI) Forum lead gave a short course on what PPI is and how to use it in research as well as the benefits of using PPI which is often a forgotten entity in the research process. I was observing this course and chipping in periodically along with one of the other PPI leads which I think benefited the participants as they could see just how PPI can be used from our point of view and what we actually do.

During the morning I realised I have talked about my involvement with the AUK Centre for Applied Research (AUKCAR) but never really gone into detail about what I do and what PPI is. Many people look at me quizzically when I say I do PPI as they assume is it payment protection insurance which it is not!!!

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PPI is not a way of recruiting participants for your research. PPI is there to be involved in your research. We can help determine research questions and if they are appropriate for the specific condition. In my case Asthma. As part of PPI I review research summaries which have been written for the lay person- to weed out those scientific terms which creep in and suggest plain english terms to be used instead. I have also provided feedback on patient information sheets to make sure the participants will full understand all aspects of the research and the requirements of them. These are often the bit parts you can be involved in.

As part of PPI I also sit on a patient advisory group for a study which we provide feedback throughout the whole research process from applying for ethics approval to the dissemination of the results 3 years later.

The list is almost endless about all the different things I can do and it is very difficult to say no to certain things. It is not feasible to help out on all the projects which you are asked to do. This is particularly hard when it is an area so close to your heart. Asthma has effected me throughout my life, dictated not only what I do but sometimes what my family and friends do as well. Having the opportunity to be part of something which will perhaps make a difference and mean change can be made in asthma care, treatment, management resulting in no one having to go through some of the stuff I have been through. Knowing that this could potentially happen is such a rewarding feeling.

Today the lead mentioned how I do do a lot and need to be reined in sometimes but being involved in PPI has given me something so valuable and came at a time where I thought my career was potentially over, I was in a pretty bad place mentally and could see no way out. To me asthma had taken control of my life and I could find no way out of it. To some extent it still does have control over what I do and when I do it but I can change this from a negative to a positive experience. Being part of PPI gives me a purpose. When I am not working I am not sitting wondering what I would normally be doing but I can sit and read research or see what is going on in the centre. The advantage doing PPI with the centre is that much of it is done in my own time. During the sleepless nights when I am needing my nebuliser I can do some PPI work and read lay summaries and comment on them. I don’t need to try and fill the time with watching rubbish on the TV.

In the centre I am not the only one effected by asthma. All the PPI leads have different reasons for working with the centre and have had their life impacted by asthma in some way wether they have it, family members have it, family members have sadly died from it, there are a huge variety of reasons, but for me I am just now being effected by it and sharing  my experiences I am living through just now as a result of asthma.

If I could do more I probably would. Often people ask if there is an incentive for being part of PPI and there is a huge incentive for me. Its about making change. Without the centre change would not happen and PPI can help by ensuring that the research done is the most applicable research for people with asthma and those effected by it.

I love doing it. It has given me a purpose again since having to give up so much. I am not sure what I would be doing if I was not involved in the centre. Probably wallowing in self pity about how unfair life is.

Today I also met a researcher involved in renal research so hopefully I will be able to bring some of my PPI experience to work and help the researchers there use PPI effectively!

The isolation of chronic illness

Someone I follow on Instagram summed up exactly how I feel my asthma has made me. I used to be almost the opposite of myself. I always want to think that chronic illness does not define who I am but then this is not  true at all. I am my chronic illness and I have made myself that way particularly recently. I have been able to embrace having my asthma control my life and have put it too good use. I shave become involved in so much with the new applied research centre for asthma and also the work I do with Asthma UK. If I didnt have the difficult asthma I wouldn’t do any of this.

As much as I appear out going and have a laugh I am almost the polar opposite of who I used to be. 10 years ago I was the one who was out all the time, socialising with friends and had a carefree life. I would be out with friends and not care or worry about getting back to my flat to make sure I had medication etc. I would never hesitate about spending the night on a friends sofa if it was too late to go home. The thought of this now fills me with huge anxieties as I wouldn’t have my inhalers, pills and would worry about keeping people up with my coughing etc.

The app time hop I love to hate. I love it because it brings memories of a carefree life but then I hate t because it is not my life anymore and I envy that life. It would be fantastic to have such a life again.

The person I follow on Instagram I originally started following for the fitness and recipes they post but recently they shared about their friends. It is something I can relate with. Just now I spend a lot of time trying to keep myself well and out of hospital. In doing that it means friends come by the way side. Most of my friends I find I have met them through the work I do with Asthma UK or through support groups and therefore a lot of them are online. I have met them all just about but it means that you can’t just pop round and relax and watch a film, it usually means arranging Skype calls or FaceTime. These friends are ones who you can always rely on. They know exactly how you feel and the right things to say whereas the closest others friends come to knowing how you feel is when they have a cold and even then having a cold is nothing like fighting for your life to breathe!!

It is sad the way illness can change your life so much and leave you with so little control.

I often feel now that I live to work and thats about it. For just now I just want to throw myself into trying to make a change for people with asthma.

This week with my birthday it makes memories creep up and highlight all the bad things that comes with an unstable condition. Not only my birthday but I am also speaking tomorrow about asthma which is filling me with weird emotions as it is bringing up memories from some really hospital admissions. Last time I spoke in public about asthma I ended in tears and made a lot of the audience cry and I really don’t want the same to happen again!

Guest Blog from a great friend Dr Steph!!

This guest blog is from Steph. I met Steph originally on Asthma UK’s online forum. We didn’t know who each other were. I was Olive86 and Steph was disco dolly or DD for short if I remember correctly!!! We chatted through the forum for a few years and then with the creation of Facebook we chatted more and eventually met about 8 years ago perhaps. I was still living down in Winchester and Steph was at uni in Birmingham. I drove up to meet her and we had a great day. It was like we had known each other for ages. We talked and talked and had many laughs. It was lovely to meet her as we were both facing the same problems and on sub cut Bricanyl so it was great to meet her. Over the years distance has kept us apart but staying in touch online is second best!!

Steph has achieved so much despite her asthma. Her most recent achievement is that she had just completed her PhD and is now a Dr. Many congratulations!!

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For me Steph is probably the one person who I can identify with the most in asthma terms. She has had a similar journey to me with asthma and had to deal with being abroad and going into hospital. Deal with university and asthma etc etc.

Here is Steph’s guest blog!!!

How long have you had asthma and how did you get diagnosed with asthma?

I first had problems back in November 2005 so scarily nine years ago now. I was 17 at the time and I had just come back from a trip to Paris to celebrate a friend’s 18th birthday. On the following Monday when I was going back to school, I told mum I didn’t feel very well and she told me I had been burning the candle at both ends and to go to the walk-in centre at lunchtime if I still felt rough. By lunchtime I felt terrible so went to be seen. I had never had any chest problems previously. After waiting for what seemed like forever, I saw a nurse who took one look at me, gave me my first nebuliser and called an ambulance to take me to A & E. After being there most of the afternoon, I was sent home with a blue and brown inhaler and a spacer. On the Wednesday of that week, I went back to school but in my first lesson, my biology teacher took me out of the room and called my year head to send me home as I still couldn’t breathe. My mum collected me and took me to our GP where the receptionist reluctantly allowed me to be seen. Once again I was sent to A & E, given some nebs and sent home later that evening with some prednisolone. On the Friday morning, I received a phone call from the hospital asthma nurse following things up as I had had 2 admissions n as many days. She was not happy with how I sounded on the phone and asked me to ring the GP surgery asking for a home visit. Both of my parents were out at work, it was the beginning of November and was cold and pouring with rain. I rang the surgery and was told I was not elderly or terminally ill so did not qualify for a home visit and there were no appointments left so to ring back on Monday. I relayed this conversation to the hospital asthma nurse when she rang back and I was told to go back to A & E and not leave until she had seen me. I had my doubts but got a taxi to the hospital and give the nurse her due, was met by the asthma nurse on arrival, saw the chest consultant and was admitted for 4 nights. So not really a positive first experience but I would say it took a year of monthly hospital admissions before brittle asthma was finally decided on as a diagnosis and that it was not just dysfunctional breathing.

How did you feel when you got diagnosed with asthma and has this had a big impact on your life, and friends and family?

I was scared. The first night my parents left me in hospital, I cried most of the night. It didn’t help that at 17 I still felt like a child but because I was over 16 I was admitted to an adult ward which was full of old ladies. I have since learned that old ladies can be very funny! Once I had got to grips with it and done my research I went through a phase of being angry and asking why me? Then I became the stubborn person I am today. Yes I have it and yes it can be annoying but in a weird way it makes me what I am. I don’t think I would be where I am today if it wasn’t for my asthma as it has made me more determined to achieve what I set out to achieve and beat it. I would also never have met a lot of the people I have met over the years both in person and through online websites like Asthma UK. I know my mum was very upset, especially when a couple of years after diagnosis I spent a lot of time in hospital and in intensive care when I should have been out enjoying student life. I have since found out that she in some way felt responsible and blamed herself as it is a mum’s job to protect their child and this was out of her control. My friends were supportive at first and came to vsit me in hospital but as time went on Steph being in hospital became the norm and they didn’t bother. It was interesting as the year after I first had problems (in September 2006) I left home and moved 100 miles away to university. My uni friends never knew anyone other than the Steph with asthma. I was lucky in that when I was at uni I made 2 very close friends who were more than happy to come to hospital with me. One studied nursing and the other physiotherapy so the A & E staff at the local hospital use to refer to us as the nurse, the physio and the patient.

Many people look at chronic diseases such as asthma with such negativity but has having asthma brought any positives to your life or changed the way you view your life?

Definitely, as I alluded to before, it has made me more determined. I refuse to be beaten by it. When I was first diagnosed, I went to chat forums and facebook groups looking for support especially from other young people and you are right a lot of it is negative with some sort of competition of who can be more ill. I don’t understand it. You have to live with what you have got and be thankful for the good days. I have found some very close friends as a result of the diagnosis, for instance I would not be writing this if it wasn’t for it.

You have had experience of different healthcare systems from being abroad- do you think one is better than the other and did the treatment differ either positively or negatively?

As you say in September 2008, when my chest was at its worse, I went to New Zealand for 10 months as part of my degree course. I literally turned up with a suitcase full of meds, syringes, needles and sub-cut insertion sets with about 5 pairs of spare underwear! New Zealand has a healthcare system where hospital admissions and appointments are free but you have to pay for GP care (about £12.50 per visit) and ambulance trips. Having said that, the ambulance service was run by St John (like here) as a charity and if you became a supporter of them for the equivalent of £17 per year you were entitled to free ambulance trips anywhere in the country. I never realised you had to pay for ambulances until I received a bill for £25 after a trip from the GP to A & E. I guess it is just something I have always taken for granted. Perscriptions were much cheaper £2.50 per item but then they only allowed 3 repeats before you had to pay for another GP appointment.

I think the internet made my trip easier as my chest consultant here wrote to someone at the local hospital before I arrived. Most of the medical team were English anyway. Some of my meds had to be changed because they were not manufactured in NZ and sub cut bricanyl was from another planet! I was first admitted to hospital about 5 days after I arrived as I picked up a cold on the plane. The staff were lovely but I was very upset as I had to be quarantined and barrier nursed as they were terrified of me bringing MRSA into the country. However once the swabs came back as negative I was allowed onto the ward. Hospital staff definitely had fewer patients to look after so more time to care. The city I was in also had a respiratory psychologist. My consultant up at the North West Lung Centre had always talked about referring me to one to talk about the anger / frustration side of my asthma but it had never been feasible as I lived in Birmingham at the time. That was very helpful and something I believe there should be more of in the UK.

Have you always been compliant with asthma medication? It’s a big issue with young people not complying. If you have ever not complied why and what happened to make you change?

I have to say 99 % of the time I have been. When I was firdt diagnosed I was in hospital enough when I was complying that the thought of not doing so didn’t cross my mind. Since having bronchial thermoplasty 3 years ago my chest and quality of life have improved dramatically. Now and again I don’t comply but that is generally when the GP thinks I should start or increase my prednisolone and I don’t agree. My GP aires very much on the side of caution so I tend to bypass them now and talk to the chest team at the hospital directly.

Sadly we know someone that has died of asthma- has this changed your view of your own asthma and how you live your life?

It always makes me stop and think twice. Too many people do not recognise / acknowledge the seriousness of asthma. I think because now it is just part of me and people around me are very blasé that it always comes as a shock when you hear about people dying.

Everyone wants a cure for asthma but is this and should it be the top priority in asthma research??

I don’t know. I mean a cure would be brilliant but I think it is unachievable as there are so many levels / types of asthma. Personally, I think it is best to use what money there is in to something that can be achieved but has equally as big an impact. The stop asthma deaths campaign is one way of doing this. Having said that, I was lucky enough to have a treatment called bronchial thermoplasty three years ago which came as a result of recent asthma research and for me was funded by the lst remaining bit of a research grant. That has completely changed my life and dramatically reduced the number of admissions I have had allowing me to complete a PhD. It was interesting to be part of it especially because my career is in science research so I saw it from the other side.

Patients and the public should always be the focus of academic research do you think if we as asthmatics were incorporated more in the research process there would be more understanding about what the actual needs are of asthmatics rather than a researchers perceived perception?

Yes because what we see and what they see are not the same. Patients and researchers have different priorities and if they do not agree at all then the research is a waste of time.

Do you have any parting words of wisdom or advice to offer to anyone who feels that having asthma is just the end of the world and its all doom and gloom?

I genuinely believe my stroppy lungs have made me the person I am today. I did well at my degree because I had time on my hands when I was in hospital all the time to study. It has made me more determined to beat it and succeed. If I can do this, anyone can as I am nothing special. You just have to try and take a positive attitude, which is difficult at times. I always tell myself it could be worse. I have met some great people as a result of asthma and made some good friends. As much as possible you just have to take it in your stride and multitasking with a neb in your mouth because you are running late just becomes a normal routine!

Last one! What is your greatest achievement?

That is hard. I think there are a few which are all related as my asthma could have stopped me so many times but going to live in New Zealand for 10 months, getting a first in my degree and then doing a PhD are all up there. The other one is completing my Gold level Duke of Edinburugh Award. I had to do the expedition part 3 times before I finally completed it and at one point had a trip in an air ambulance but as I say never give up. There is always a funny story to tell.

Friends lost and why change is needed so desperately

It is this time of year where we are so grateful for our families and friends. We can celebrate Christmas and see in the New Year surrounded by those we love and cherish. That being said it is also a time for many families to remember those who are not with them. Those who have been taken too soon or those who have passed away due to old age.

I come from a very big extended family and have so many surrounding me but I still do not forget those who are missing. My uncle who sadly died far too young in a tragic accident and other members of the family gone to.

It is not only family that I think about but those friends I have made over the years that have lost their battle. That battle with asthma which kills roughly 3 people every day. To me people don’t die from asthma, they are killed by asthma. Why do I think like this?? because no-one should suffer such a bad attack or have their asthma so poorly managed that their life is cut short and taken because of an asthma attack and often the consequences there of.

When I spoke in Oxford at the first scientific meeting of AUKCAR in the PPI session, I closed rather emotionally saying that the centre would succeed in my eyes if after its first 5 years the number of people I personally knew who had died of asthma remained at 6. I am 28 (soon to be 29) and know 6 people who have died as a result of an asthma attack or the consequences of a poorly managed asthma attack. These 6 people all had asthma as a cause of death on their death certificate. This should never have been the case. Those 6 should still be living their life. Enjoying their family and friends as I am able to do. This is why I fight and volunteer for the Asthma UK Centre of Applied Research and Asthma UK to make sure everyone understands that asthma is so often mismanaged and poorly understood resulting in far too many hospital admissions and deaths.

My first experience of someone dying from Asthma was 8 years ago and it sticks so vividly in my head the day I heard the news. When I was living in Winchester I was often a patient on Shawford Ward at the Royal Hampshire County Hospital. This was where I first met Jeanette and her family. Her family adopted me so too speak as my family were up in Scotland and not able to come and see me very often. Me and Jeanette spent about 3 weeks in the same bay in the ward and I got to know her very well. We became firm friends. She was much older than me. She had her own kids and grand children but we got on so well. She made that hospital stay so much easier. I was in hospital that admission for 13 weeks. Even once she was discharged her husband would drive her in to see me every week. Once I was discharged I would often go round to her house and watch DVD’s and have afternoon tea. Her husband was the most amazing baker. (He would bring his cakes into hospital for me!!). Jeanette’e health slowly declined as her asthma became harder to control and more infections caused lung damage. I moved back to Edinburgh but when down visiting friends I would always arrange to see Jeanette and her family. The last time I saw Jeanette I was so shocked. She was in hospital- on Shawford Ward and very poorly. Her breathing was so bad and they just could not get it under control. Due to such a long period of poorly controlled asthma her heart struggled and eventually her body could not cope and she salt died. They did so much for me and it was such a pleasure to be able to repay those visits with my own visits.

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(The photo above was taken during that long 13 week admission. My friends on the rugby team were about to leave university. When joining the rugby we had initiations to the team. The members of the team not leaving decided to do initiations to life for the leavers. So as part of it the nurses allowed them to come in and visit me on the ward in fancy dress to cheer me up!!!)

The day I found out Jeanette died I was up in Edinburgh. I didnt tell anybody at first. I dent know how to. I almost couldn’t believe that she had died and it was because of asthma. Part of me was scared because I have asthma, I have poorly controlled asthma. I was asking myself could this be me, could I die? I could not make sense of what had happened. I was meant to be caddying for my step mum in a golf competition. I couldn’t focus. I forgot my golf shoes and had to buy new ones. I dealt with it the only way I knew how. I just didnt talk. When I don’t talk my step mum talks more and asks questions about why I am not talking- knowing something is wrong. I ended up snapping at her over something so small and insignificant I can’t remember what it was but i just came out with “Jeanette died and I don’t want to talk about it”. I don’t think I ever actually have spoken about it or how I felt. This is probably the most I have ever opened up about my first experience of someone I know dying from asthma.

I draw comfort in knowing that Jeanette will have died with those around her who loved her but also in a hospital ward which to this day I can not praise highly enough. Shawford Ward in Royal Hampshire County Hospital is one of the best respiratory wards I have ever been in. The staff are so caring and highly skilled. Even when they are stressed and run off their feet they make time for you as a patient. I remember countless nights struggling to breath and nurses would sit with me to make sure I was ok. The care assistants would come and chat and help me learn how to do my sub cut infusions myself. When I was getting better and on that long road of recovery to discharge they would get me helping them out doing the menus and the teas as this was the time many patients had visitors but being at university my friends would come in the day but my family were so far away the nights were hard. I don’t think I have ever really thanked them in person for all the did for me. So knowing that Jeanette was being looked after by them brings comfort. Rest in peace Jeanette.

There are 5 others along with Jeanette. They did not impact on me quite as profoundly as Jeanette’s death did and I don’t know why. I think it is to do with all she did for me and what her family did for me. I grieved for the other 5 as you would for anyone. From my own experience of severe asthma and uncontrolled asthma I did not feel particularly shocked that I had 6 friends who have all died from asthma. I think because 4 of them had asthma much like my own. I have had that feeling of not knowing if I can take another breath, or have the energy to continue to fight to breath and wondering if I will survive. It was not until May this year that I really took notice that I should not have so many friends who have died of asthma wether it be very severe or mild. The publication of the National Review of Asthma Deaths shocked me. I was gobsmacked. I knew asthma effected a lot of people but seeing in writing just how many people had died and how many had died needlessly made me sit up and listen so to speak. I realised that my 6 friends who make up the NRAD statistics should not be part of those statistics but should be pursuing their careers or enjoying their grand children. They should not be a memory or that person missing from a family.

I hope that in some small way I can help to make a change. Make people stand up and notice asthma. Promote good asthma management. I know that by telling all those at the meeting in Oxford that I had six friends die from asthma hit home. They took notice and saw the real life emotion and impact it has. Researchers can read statistics and know percentages but hearing from someone with asthma who knows what it is like to fight for breath makes so much more impact and hopefully will drive researchers to find ways of understanding asthma better and ways to manage it more effectively.

In the meantime I will continue to do my bit. Raise awareness, support research, be part of PPI for AUKCAR and do anything I can to help make the change that is so desperately needed.

I leave you with this poem written to me by a friend when I was in ITU after an asthma attack.

Taking action- when, what and why??

When illness strikes it is never at a time that suits you. It can’t be scheduled into your diary when you have a few days off. In fact quite the opposite- things normally happen when you have loads of stuff on and events you are looking forward to!!

This is what is happening right now!!

Of course Christmas is fast approaching and so are all the Christmas meals and drinks parties etc but with this comes changes in weather, the cold and flu season, basically a really rubbish time when your asthmatic.

For the past two weeks I have been battling a chest infection which is not totally flooring me but just there all the time grumbling away in that really annoying way. It started off first with my sinuses and I noticed a drop in peak flow. At this stage I would not really worry previously but given past experience I have been wrong. So in my eyes I overreacted at first and put my pred up straight away and started my emergency antibiotics. One course of antibiotics down and almost finishing the second I now have a well established chest infection and feeling a bit rotten. I did the right thing by over reacting. I would hate to think where this infection would have ended had I not acted and recognise as I did.

As part of having difficult to control/ brittle asthma I have an emergency pack at home. This includes a pack of prednisilone of 40mg for 7 days, antibiotics and extra nebs including saline nebs to help clear the mucus which builds up. By having this pack at home I can start treatment at first sign of an infection when it is not always possible to see my own GP or the on call Dr. For me now there is no point in delaying. I am far better to over medicate and be safe than wait to see a Dr because the infection could take hold and cause my asthma to get even more uncontrolled and risk exacerbation.

I am hoping that this will all clear. I have both my work and my lacrosse teams Christmas meals at the weekend and I desperately want to be well for them. I would hate to have to miss them. I also have an appointment with my consultant on Wednesday so only 2 days which will be good as I feel I could really do with seeing him. I can’t put my finger on it but my chest is just not right. I am not meaning this infection but the last few months I have been a lot more symptomatic and using a lot more reliever medication and also pain relief which concerns me. I don’t want to just function. I want to live again. I hope that seeing him and having a good appointment I can get back on top, take control and really enjoy 2015 and achieve all those things I have not managed to once again because I have not had the health I want.