My HealtheVoices19 experience!

Last night I was catching up on reading some blogs and came across one that was written by one of the other people who attended HealtheVoices (HeV) who opened her blog post with my exact thoughts. She had been drafting and redrafting posts about her experiences of HealtheVoices and not knowing quite how to write it. She came down to the point of just getting it out and putting it down in a post. So this is what I am going to do as well because like her I have been going over how to write my experience and then rewriting it and never being happy or knowing quite how to word it.

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So here goes…

Leaving the UK to go to Dallas was a mix of nerves and excitement. The lead up to the HeV event was so positive and the support from everyone was there right from the start so I was feeling at ease but also felt a little is this really going to be like this once I am there too. A small hiccup at the airport but I was soon at the hotel and getting ready to settle in.

There was no real plans for the Thursday night. There was dinner but it was a buffet and you could just go down and eat when you wanted. I am never very good at these things and went downstairs several times with the intention of going in to the dinner room but I kept bottling it so would head back up to my room. I was too nervous, and tired because I was still on UK time and had been up for about 24 hours at this point, but I needed to get over jet lag so I could enjoy the conference without crashing, so I forced myself to go in and join a table. I am so glad I did go down. The slight awkwardness of plating my food and all the time thinking which table should I ask to sit at, who won’t mind if I join them, there was 101 things flying through my head but actually some of those who I had my first meal with in Dallas are also the ones I had my last lunch with as well. I did have that bit of security with me at dinner though- I had my name badge/lable/neck thing so anyone I met knew my name, knew I was speaking but also knew that it was my first time attending the conference.

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When I have attended conferences in the past I have felt at ease, and with each conference I attend and speak at I feel more confident but this was different. When I have spoken at conferences I have been there and what I am speaking about is my specialist interest and my experience, I tended to be the patient giving my opinion of essentially being an expert patient. This was a different ball game. Everyone there was like me, we are all experts at living with our own conditions and doing our own thing to raise the profile and difficulties we face trying to live a functional life.

I have never really thought of the work I do with asthma as advocacy, I actually didn’t like the word advocacy but attending HeV I came away feeling that maybe it was and I was an asthma advocate. People often ask me what drives me to do what I do, how do I come up with content, ideas etc. I never really know how to answer because I have never thought about why I do these things. I just do it because I hope that by sharing my story maybe people or even just one person might be able to take something from it and their experience will be a bit easier.

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It sounds cliche but after my initial nerves everyone was so welcoming at the meeting. Wether you were a first timer or had been at all the HeV meetings in the past everyone was on the same level- we were all there for one reason. Everyone there is motivated to help make a change. There was a variety of people who have had a condition all their life, then some with conditions that vary, go into remission or are cured from it but through their experience they are sharing knowledge gained, experiences which were good or bad.

I still really am struggling to put into words all my emotions from the meeting but I think the photos speak for themselves.

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So where do I go from here??

I have a few projects that I would like to pursue the most pressing one is to try and get rid of all the stock images media outlets are using which are subconsciously promoting poor inhaler technique. Almost every day I see a photo being used on a media article which shows a child or adult using a MDI (metered dose inhaler) with no spacer and even though there is no spacer the technique is not good either. In the UK there is an inherent problem with asthma management and self management resulting in high death levels from asthma attacks which can be prevented. One of these preventions is correct inhaler technique.

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And a last disclaimer:

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To my new family and my tribe #HealtheVoices19

Wow where do I start. It takes a lot for me to be left speechless but I am unable to put into words the emotion and feelings from this past weekend. It sounds a bit cringe to say but it has been truly life changing.

I have made so many new friends who I know will be friends for life.

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To all my new friends from HealtheVoices you all have no idea how much I have appreciated this weekend. The main reason for why it was such a big deal was in November I had a near fatal asthma attack. What was different about this asthma attack was that the asthma consultants were basically there right from the start of the attack. Then the ICU consultant told me if we didn’t turn the cornerstone we would be running out of options and I really needed to turn the corner ASAP. Thankfully I did turn the corner but the attack left me traumatised and I still am living in fear from it. I fear I may not be able to fight the next attack, I fear who will be with me if I have another attack and will they be able to cope. I was also terrified that I would not manage the flight. I know my family were really worried about me coming over on my own but I had to do it for me. I needed to be able to prove to myself I can do it.

Before I came out to Dallas I didnt know what I was going to do moving forward.

Asthma has cost me so much in life and it still does but being able to be among people who know what that fear is like and you don’t just pity each other or say “yeah I know what it is like” you answer it with comments about how you over came adversity and give ideas on how I might do the same. I also had to give up my job which I loved but despite this doors have opened and I will be moving on to great things and with the inspiration and motivation I have taken in from this weekend I will not be looking back.

The other great thing is that I know there is life beyond being ill and you can use your condition to better yourself and to better others as well. I may not be able to control my asthma and control my health but I can control what I do with it and use it to help make changes for others.

I feel so included in a very special group of people.

You guys are all my family and my tribe

x

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2016 Round Up!

2016 has been a pretty awful year. There have been highs but there has also been some mega low points so like much of the world I am looking forward to 2017 and to it being better than this year has been.

January, I guess the start of the year set it off, after being admitted to the intensive care unit on Hogmanay with my asthma. This really took it out of me as for the first time I could not work out what went wrong and why I went downhill so quickly. It still haunts me to this day about how it all went off so quickly.

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Then after being discharged too early (i am one who will go as soon as possible but this time I wasn’t and knew I shouldn’t be going home but the Dr’s were not listening!). So two weeks after discharge I got readmitted and spent my 30th birthday on the respiratory ward which I know all to well. So I guess its not too bad as I knew who everyone is etc but its not the best feeling.

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Photo from on my 30th birthday. At this point I didnt think the year could get much worse. I was off work so long and really worried about being able to keep working. January was one long fight and I was so glad so see the back of it.

February was a better month. Spending time with my nephew making pancakes and also being part of the Scotland squad. Despite the my last hospital admission occurring mid Scotland training weekend I was still able to trial for Home Internationals in Guildford Surrey later in the year so it gave me focus. Having that focus was a huge thing for me and a real positive in what seemed like a whole heap of negativity.

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March was my nephews 3rd birthday- so always a good time to spend with the family celebrating and eating cake!!! I also went to the Scottish Parliament again in March with Asthma UK for the cross party group on Asthma. This was the last one held and there has not been another one this year which is a bit sad as Scotland really is leading the way with asthma research and big data research looking at whole populations in databases rather than bit parts. Hopefully we will have another CPG again soon. At the end of march I also moved house. I moved from my 1 bed first floor flat to a 2 bed top floor flat just round the corner from where I used to live. It was the best move ever!!!

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April- this was the start of the year becoming good. The hard work I put in paid off. My asthma was semi under control. Or as under control as I could get it. But I was able to travel to Guildford Surrey as part of the Scotland B squad for Home Internationals playing England, Wales and Ireland. It was a dream since I was at school to play for Scotland, pull that blue or white shirt on and sing Scotland the Brave in front of a crowd. I got to do it and it may not be much to some people but it was the most awesome feeling. I enjoyed it so much and was really proud to have been selected.

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My club team also won the final four weekend of the Mixed clubs tournament which was great!

May- there was more lacrosse. Capital won the MacRobert Mixed Tournament, Capital won Community Engagement Club of the Year along with Edinburgh City for the after school club we run. I was also elected as Development Director for the Lacrosse Scotland Board. It was a big month lacrosse wise but also it saw world asthma day which was a much quieter affair this year than previous days. Softball and the Laxadaisicals started back up for the season!! Softball was great to keep team spirit up while there was not so much Lacrosse going.

June was a huge month and one of the most positive months of the year. Mainly because I was so busy but also because through March, April and May I had been trying not to do so much to enable my lungs to be good for what was going to hit them. We started off with a trip to Italy for my Mum’s 60th Birthday. It was amazing. A big villa in the mountains with all the family just about. My older step sister and her kids couldn’t make it due to school and the fact my youngest nephew was not born yet!!!

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June continued to be an awesome month as I travelled to London to join some americans who were over from America. We formed a team called International Inferno. The girls were from Florida Southern University and their coach Kara who had just won the NCAA Div 2 Championship. I joined them in London for a weekend and had a great laugh getting to know them and playing lacrosse with them. To say I was slightly nervous was an under statement as they have come off the back of a championship win and I am a goalkeeper who has been in the goal about 6 months!!!

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After London it was a quick turn around and the travelled to Prague to join the team there for the Prague Cup. Prague was a great experience. We were second in the tournament but it was so much more than just coming second. Have made some great friends and hopefully will see them all again soon.

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(two missing from this photo of players!)

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Coach Kara Reber in the middle in yellow!!!

So as you can see June was a huge month!! July was a month for rest and recovery and thats what I did. I really feel my body took a hammering from the constant go go go but I wouldn’t change it. It was the really good pick me up and also the sort of finale to my lacrosse playing days. I was ambitious after Home Internationals but could not resist the chance to go and play in Prague etc. Im so glad I did it. Going with your gut it a great thing!

August started off with a trip to London to speak about living with severe asthma. This was a great opportunity as I was not speaking to your average people about asthma but I was speaking to the creme de la creme of asthma researchers and Drs. I was speaking to Drs who I have read about and wanted to be under because of their expertise in asthma. The likes of Ian Pavord and Adel Mansur. I was speaking to them to give them advice of what it is like to live with severe asthma, and the trials of living on steroids. It was a great experience and I ended up coming back with a new area of interest. I joined a group of paediatricians to collaborate with them on a bid proposal for a piece of research. It was amazing being part of something from the birth of it and the idea of it to the grant application. Also this was one of the first times I was a co-applicant on a bid. Something new for me (after this year not my last either!!). My high of the start of the month was short lived as not long after my return from London I ended up having a severe attack and ending up going to intensive care for a few days and then a further week or so in hospital. I kind of pushed to get out of hospital as had big plans in September which I was not prepared to give up on (I did end up not carrying out my plans but more of that to come). This admission was tough. Access was a nightmare, they couldn’t get an IV in. I ended up asking one of my colleagues from renal to come and try cannulate me but not even they could manage it which is so unusual- renal nurses get blood out of anyone!!! It took a while to get off the IV aminophylline as well. But we got there and I got home.

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This is a photo I like..I used my oxygen to blow up a frog balloon thing my nephew got on a magazine. I wasn’t able to blow it up (obviously- don’t think I could even now) but thought it was a funny photo!!!

September started off with me making difficult decisions. I pushed to get out of hospital because I had big meetings coming up. I had been invited by Astra Zeneca to come down and talk at their annual meeting which they were hosting in London ahead of the European Respiratory Society Conference. I went down to this and gave my talk. I made some amazing friends, one who has had their life changed by new drugs out there and the other who has asthma like me and can totally understand how it feels. Its not often you get someone who just understands but he does, and then you have someone who proves your life can be changed by drugs which has renewed my hope in the one day there will be a drug I can get which will change my life around.

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After the meeting I was meant to stay in London and meet up with Jess a fellow brittle asthmatic who I have spoken to for about 10 years after meeting on the asthma UK forum. I was also meant to be going to a meeting with the European Respiratory Society as a patient expert on a project they are involved in and finally I was also invited to the House of Commons for a drinks reception held by asthma UK but I decided to head home on the Friday night and miss these meetings as I just wasn’t well enough. I didnt get to meet Jess either but we both agreed there would be other times!! I also had clinic in September. I am lucky in that I can contact my consultant should I need to in-between clinic times so clinic is just a touch base time. Nothing was changed and we are just going to keep going as we are and tackle each blip as they come!!!

September I also took on the position of assistant manager (AssMan) of the Scotland Senior Womens Lacrosse team. I was so thankful for this. Since not playing I have really wanted to still be involved in Lacrosse but not knowing how, so by being asked to be AssMan I was thrilled. I have found I can still use some of my sports science background and help out with the exercise testing of the players and help with the goal keepers too. I really enjoy the job and so thankful for it.

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September ended with another new experience. I was interviewed for a book which I am being featured in. The book’s working title is Healthcare Hero’s and I am being featured because of the stuff I do for research and with lacrosse in spite of my asthma. But as I said to them at the end of the interview if I didnt do what I do I would be in a big depression and have nothing to live for. Its simple as that.

October was a quiet month. I didnt feel great most of it to be honest. I was back and forth to the Dr a fair bit and emailing my consultant to. I was not really bad but not great. That horrible in between time. I managed to hold out most of the month until my GP decided enough was enough and got me in to be seen. It was a useful admission as it meant we sorted out my main relief from the chronic lung pain I have from all the exacerbations but also got rid of this viral thing I had. It was pretty uneventful other than all the junior Drs were terrified of me as I sounded awful but not awful for me!!!

November was a fairly big month too. We had the annual scientific meeting for the Asthma UK Centre for Applied Research. This was hosted in Edinburgh so I got to stay at home but it was great to meet more PPI members who I have not met before. It was an interesting meeting and also amazing all the research which is going on. Later in November my best friend got married. My little brother payed the pipes. It was held in Edinburgh Zoo and it was an amazing day!! I loved every minute of it. I just wish I could have stayed to the end but my chest was just not up for it and I had to leave. But Jenni looked amazing and both her and Rich looked so happy.

Later my brother also got married up in Loch Tay. They had fantastic weather and could not have asked for a better day. Slightly chilly but clear, no wind and no rain. What more could you want.

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Me and my nephew at my brothers wedding.

December to where we are now. December brought the meeting of Jess and her beautiful and wonderful canine partner Xenna. We have waited 10 years to meet but once we met it was like we had always known each other. Poor Xenna didnt get fed till late one night because we were just chatting and didnt realise the time till she started whining at us. She got fed very soon after that don’t worry!!!

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(me making Jess look like she has a ta!!) It was so great to meet you!!! One of the strangest things happened though. When we were wanting around the museum Xenna kept staring at me and walking over to me. We think this was because she was picking up I wasn’t well and was getting chesty. She did it several times.

Sadly not long after Jess left I was admitted to hospital with a chest infection. Maybe Xenna was right and could detect I had a bad chest and was brewing something. Even though she is not trained for that. It was very odd. The admission was fairly uneventful and I picked up ok but I was determined to get out and be ok for Christmas and be with my family. It was slightly stressful as didnt let everyone know I was admitted as it was rather routine but news got out. I just want to get on with admissions quietly and my own way unless I am critically ill and going to intensive care or high dependancy then I let everyone know as I would be AWOL otherwise!!!

Christmas came and went. A small quiet Christmas up north with my mum, step dad and youngest brother. It was a lovely time. The weather was awful- very windy, snowy, raining and cold but it meant we could stay in by the fire and reads books and chat.

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Today was back to work and face reality before Hogmanay and we welcome in 2017. Here hoping 2017 is a better year health wise than 2016 has been. I have to be honest it has been a long slog and really hard work. There have been some awesome highs but some really bad moments and some movements I never want to go through again.

Motto for 2016 has been Dum Spiro Spero

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How do you get used to to living in a state of instability?

You don’t….

I like my life to be quite ordered. I like to know what I’m doing day to day, week to week. Many think I am stuck in my ways but I like routine. Routine gets me through, it means I know where I am. Recently I have found my asthma has been not to bad but the last month I would say it has been teetering on a knife edge. Never quite knowing when things are going to tip but desperately hanging on.

It is that very difficult period where your just sort of suffering. The nights are long and a little frightening as my asthma always gets worse at night. I finish work at four and have often been in bed by 6 using my nebulisers but just exhausted from getting myself through the day without getting sent home or worse ending up in A&E. Part of me wants to just hold my hands up and admit defeat but I can’t. I have to keep going.

If I am honest I feel alone just now. I sort of feel like I am on my own with this horrible condition even though I know Im not. I have lost a lot of my vital support networks which I didnt realise I heavily relied on even when my breathing is good. Matters out with my control have meant that to protect myself I cannot show true self or leave myself vulnerable to others, in doing this I am protecting myself but I am also isolating myself and I hate this. I loved being part of the support groups being able to help others and receive help and support myself too.

I really hate asthma just now and how little it is understood.

If only it could go away or a cure could be found soon. I try to be strong but today I can’t be. Today I want to hide in my flat and curl up in bed.

One of the other things I hope that by just not doing anything this weekend is that I still have a massive fear of going to A&E again. The fear of not being listened to is still fresh in my mind and that resulted in me going to intensive care because a nurse thought he new best, I was young and was not that bad. I hate to think what would have happened had I not had my own nebuliser with me and had I not know my own chest. I mean even with my own actions I couldn’t stop myself ending up in intensive care and this really terrifies me. I fear that I will end up being looked after by the same nurse again, it may be an irrational fear and the chances are slim but it is still there in my mind at was was already a scary time and it was just made worse. As a result there has been times when I may have had to go to hospital but did because I just stayed at home and would do back to back nebs- maybe more than I should have but the fear was paralysing and I can’t explain that fear to anyone.

I have to look at the positives though. I have had the most amazing summer doing things I never thought I would have. I made some awesome friends and played more lacrosse than I could have dreamt of so while I don’t feel great I can sit and look at the photos and memories of the summer and smile knowing that with hard work I will be able to do this again!!

Trying new things- rock climbing!

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Last night I tried indoor rock climbing for the first time. Well rock climbing of any sort. I have never tried anything like it but it was great fun. I was a bit nervous about it and worried it would be something that yet again I would do a bit of and then have to stop because I was short of puff or getting wheezy. I didn’t though. I don’t know what I was happier about: trying rock climbing and loving it or being able to do something with my friends and not needing to stop and sit out.

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Doing my first climb once in the harness etc I had butterflies in my stomach. I was nervous but didnt want anyone to know it. Im not scared of heights but it was the unknown. I went into it with the thought that this was yet again something that I would not be able to complete so I guess I had some fear that I would find this to be the same again. It was such a relief to finish and feel tired and have my hands burning but it was because I was able to enjoy the whole time and be sore from doing a lot rather than sore from over doing it. It felt like the old days when I was doing a lot of running. I would go on a long ten mile run and come home collapse in a heap and feel totally spent but it was a feeling of accomplishment and achievement. It felt like this last night. Getting into bed and feeling exhausted but an exhaustion from doing stuff and enjoying myself.

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I have always wanted to try rock climbing and never found the right time to go or even how to go about trying it for the first time so when the chance came to go with friends who go quite often it was an opportunity not to be missed and I am so glad to have done it. There was a slight fear of the unknown but I knew it would be good as Im not scared of heights and like extreme skiing and all that so this was another thing to try and something I will defiantly do again. It will be good for my core strength and breathing which in turn will hopefully turn things around! Not only was the physical challenge good but also the mental help and the positive feeling it has given me that not everything is not impossible.

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I am not expecting miracles but i do think this is going to be good for me (even if my hands, back, forearms and legs all hurt) and help. Being able to do what “normal” people do and just be part of something without anyone even having to ask if I was ok because my breathing sounded bad. The ability to rest while someone else climbs and you mind the rope (or learn about it) was good to recover. It will take a while to get good at it and not feel sore but I was really impressed with what I achieved last night and to just feel good today and not suffer!!!

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I thought there was no light at the end of the tunnel but there is and it is going to start shining bright!

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A question that changed my life.

What is that question?

“Do you want to die?”

Never a question you want to hear but one I have. It haunts me so often. Especially at this time of year. It was the night of my birthday in 2008 and my friends went to such great lengths for me to have a great birthday that I just had to enjoy it and wanted to take part in everything. I didnt care about my asthma at the time. I wanted to take part in the ten pin bowling, the dance mat at the arcade, the meal and then Flirt (a university event) in the Student Union.

It was not for much longer that I didnt care.

But I wanted to enjoy my birthday. And I really did up until I started feeling really poorly.

(if you wonder why everyone has Fosters beer hats on- my birthday is on Australia Day and the student union was giving hats, beach balls and flip flops away. Of course we had all of it!!)

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(the top right photo if you are wondering if I am wearing a bumbag- your right I am but it was holding my subcutaneous syringe driver of terbutline in it- my supposed life line!!)

The photos above you can see I am having great fun. The photo below you can see from the colour in my face I am starting to not feel well but try to push on. About half an hour after this photo was taken I had been taken by ambulance and was in resus.

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These photos show some of the good times and the great memories. A great rugby tournament where clearly some of us had less suncream on than others. A random social which included on drawing on t shirts wacky hats and for me a neck tie, and the last a trip to bournemouth beach where the boys went swimming in the sea!

 

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These photos don’t show much. They are not even the best pictures but looking at them so many memories coming flooding back. My really closest friends when I was down in Winchester were the rugby girls. They were the ones who named me Tux and really did look out for me. I think they are possibly the only group of friends who get away with coming dancing into Shawford Ward (the reap ward in Winch), in fancy dress, slightly tipsy, stealing wheelchairs and generally carrying on. But you know what it was the best thing.

Up until this point I have to be honest and say that I really didnt take responsibility for my asthma. I did what I wanted, when I wanted. I paid for it but I did it.

I find my self reflecting back and wondering would I have changed anything. Part of me instantly says yes I would. I put my body through hell, I put my family through hell, I put my friends through hell. I caused myself so much upset but in causing that upset I also had the time of my life. So this is the part of me that thinks maybe No I wouldn’t change any of it. Sitting where I am now I know that in order to not land myself in hospital all the time I would not have been able to take part in everything my friends were doing. It was not just the going out to the student union but day trips to the beach or BBQs and huge assortment of different activities I would have missed out on just to avoid not potentially precipitating an attack and a hospital admission. This would have led to quite a lonely life at university.

Why am I writing about this now?? I reflect back on it every year but this year has seen the biggest changes in me. The Tux in 2008 was living life, doing what she wanted, when she wanted and not having a care in the world. I was at one extreme. I find myself now at the other extreme. I don’t go out to parties, I don’t play sport, I do everything I can to avoid potentially setting my asthma off so I don’t have an attack which will land me in hospital and result in me missing work something I am desperately clinging on to. I can’t afford to not have no cares in the world anymore. Tux of 2015 is very different.

2007 to 2015 has been slow gradual switch from one extreme to the other. This change came about because of a question my Dr asked me “Do you want to die”. The consultant who said this to me I had a rocky path with. He is the old school Dr and says it how it is. Calls a spade a spade and doesn’t mince his words. there were times after ward round I hated him and never wanted to see him again. He probably thought the same about me. But it was that question that hit me like a ton of bricks. I had never really considered that MY asthma could kill ME. I either chose not to understand or chose not to remember all the frightening nights in intensive care on CPAP helping me breath and having a nurse stay with me because my family were up in Scotland. Every 999 call would end up with me in resus Drs and nurses pumping me full of medication and on one scary moment having the Dr use the mask and bag to help. I didnt comprehend just how serious some of the situations I got myself into were. I was never really aware of just how easy it was for asthma to kill you. From working with AUKCAR I know that asthma needs to be respected otherwise it can result in death. Not only could it happen to me but it could happen to anyone with asthma if they don’t take it seriously.  From that day I knew I had to change. There were hiccups along the way and I did go back to my old ways sometimes and not care about my asthma but generally I did take note of it.

The week of the “do you want to die” question I made my mind up to go home to Scotland and leave university and get myself really properly better. I am still trying to get totally better and get toady control but I think this is unrealistic. I want to get myself as well as I can and be as stable as I can on the correct medication regime.

In many ways that birthday in 2008 was a pivotal moment. Had events not have unfolded as they had I would not have left Winchester, I would not have studied nursing, I would not be a nurse, I would not working with AUKCAR trying to make a difference for all people with asthma. My life may have ended up as it is now but probably not. We don’t know how our paths change and what will cause change but for me it was being asked if I wanted to die.

Every birthday that comes I do think how lucky I am to have such supportive parents, friends, work colleagues and medical team. Without them I don’t know where I would be.

 

Review of 2014

It has been quite a year this year. So much has happened!!!

January- I started working in the Community Dialysis Team and it has been fantastic. It has not gone quite as planned. I had hoped that moving to CDT would mean my health would be much better and I would be able to get my old life back. This has not quite bent he case. I have had to reduce my hours to part time which has made a big difference. January also was the turning point where I realised that I would not be able to get back playing lacrosse or running the half marathon in May. This photo is from my birthday with my nephew!

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February- I was admitted to hospital. It was what I thought at the time one of my most terrifying hospital admissions. A nurse on one of the wards I am admitted to regularly told me I knew what it was like to be dealing with asthma and I shouldn’t be scared. I was terrified and exhausted and told be told this was enough to tip me over the edge. I never thought I would experience this especially from people who knew me and know my asthma. I ended up discharging myself. How can you stay somewhere when you have to hear stuff like this.

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March- this was a great month. I went Canada. A massive turing point. 10 years since my asthma really started going down hill which was precipitated  by pneumonia I got when I was out in Canada ski instructing. I had not been out in Canada since then. Emotionally it was really tough going back somewhere which turned my life around. I was going back there on my own. I was staying with family which did make it easier but it did also show just how much my life has changed. 10 years ago I was able to  ski a whole day and not need to take breaks or finish after a few hours!!!But it was fantastic to go back there and in a way face my demons I left there. I did though miss my nephews first birthday as I was flying.

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I also got to catch up with an old school friend while I was in Canada. Its strange when we were at school together we never really got on that well. But Angela came over to stay with a mutual friend Jenni and we grew to be great friends drink that year and when I was over in Canada I had to go see her and we had a great time!! It was just a pity that it was such a short time I had to see her!!

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April- I went to the respiratory nurse specialist clinic for the first time. I did think this would be a turning point in my asthma but it turns out it wasn’t. April really was essentially a non eventful month. I did have a few asthma attacks. had to miss some golf but all in all it went by with no specific events I can recall!

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May- this was a massive month and one I will remember for years to come. Infact it was 2 days which I will remember as they did change my life. It started on the 5th where posted a video for world asthma day which is on the 6th. It was seen by Asthma UK and I was asked to do an interview for the Guardian about asthma and Dr’s not listening to their patients. I was playing golf with my step dad and step brother when a photographer followed us round th golf course for pictures to go in the newspaper. It was published on the 6th which was also my step dads 60th birthday. That morning I got a phone call to do a phone interview and speak on the radio as the National Review of Asthma Deaths had been released. As a result of the interview I was asked to attend parliament for the launch of the new research centre of excellence for Asthma. Here I met some fantastic people and was asked if I wanted to become involved in the PPI section of this centre and I said yes. The rest you can read in my blog.

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June- I had an appointment with Cardiology as was having problems with my heart. It all turned out to be a side effect of my asthma meds. June was a stressful month as my Granny got taken ill and we thought the worse. She was very poorly and we thought the worst. Remarkably she is still here and doing not to badly. My step sister also got married down in Wales. It was a fantastic day and she had a lovely day!

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July- I had a week away playing golf in the Highland Open. It is a fantastic week. I love it. Getting to see friends and have a bit of competition. The weather was amazing. I again qualified for the scratch but got knocked out in the quarter final! It was a good rest.

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August- I had some wonderful trips to different golf courses in Scotland such as Kingsbarns which was rather eventful- thunder and lightening!!! I also thought this was the month that I would manage to taper my prednisilone down to eventually get off it but as the year moved on this was not the case. It was nice to think though that I might have got off it!!

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September- a family holiday to Portugal!! The usual golf holiday with my Dad and Stepmum but this time my brother, his fiancé and my nephew came too. It was a lovely break away!! This holiday however was also point in which I would go from working full time to working part time. On a more positive note though I did see as it turns out my new consultant. I had originally gone to him for a second opinion and Im not sure how it happened but it seems now he is my consultant and my old consultant is no longer my consultant.

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October- In february I thought I had the worst hospital experience I would ever have. How wrong I was. October was the worst experience I have ever had and hope no one ever has a similar experience. I did make a blog post about it and it was protected with a password but now I have taken the password off it. I want all to read it and understand that this must never happen. It makes me realise that no wonder the statistics about about asthma are so bad if this is how asthma is treated.

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November- I had a the experience of a life time. I went to Oxford with AUKCAR for the academic launch. I was able to speak to some fantastic people and have made so many contacts as a result of it. I have got a few projects to be involved with which is fantastic as now it means that rather than fundraising for asthma and to try and make a change by giving money I can now help make a change to asthma by helping with research. This is why May was such a big month for me. Had I not done that video for World Asthma Day I would not be involved with AUKCAR and I love every minute of it.

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December- has been more of a reflective month for me. There has not been much going on. Mainly I have been gearing up for Christmas and trying to keep myself well. I also started a new project where I have asked various people I know if they would like to write a guest blog about their experience with asthma. I have a few more to post which will be done in the new year.

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2014 has been a mixed year. A year of highs and lows, ups and downs. I have learned a lot over the year about myself and my asthma. By being involved in AUKCAR it has made me change my attitude towards how I approach my own health. I used to try and avoid going to hospital, or increasing my medication and often would do things because I wanted to even if I was not well enough. However now I think I take my condition more seriously. I also know that being involved in AUKCAR with one of their aims to be to improve self management and reduce hospital admissions I need to act responsibly and take action when I start feeling unwell following my own self management plan. Medication adherence and compliance is one of the big issues and I would be contradicting the ethos of AUKCAR if I did not act as I do now. I used to act totally the opposite and would do all I could not to increase medication and often to y detriment.

I am looking forward to 2015 and all it brings.