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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20 years gone too soon.

Its the 14th of December. A day that seems to come round each year all too quickly. Now it is not only one person I lost on this day but 2. There are not many days that you will remember exactly where you were and what you were doing but for me the 14th December I remember exactly what I was doing last year and also 20 years ago.

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20 years ago my Uncle tragically died. I remember it so well and I hate that I do. Me and my younger brother were at my Dad and Step Mum’s for the weekend. We all went to bed on Saturday night as normal. Early hours of the morning the phone rang and it was the call to say Uncle Dermot had had a traumatic brain injury and was down in Nottingham in the hospital on life support. It is so strange the things you remember, while Dad was making arrangements to drop us back off at our Mum’s and go down south, me and P were in the front room and he came out with ‘there would be no more Kukuri’s’. I have no idea why it stuck in my head. Uncle Dermot was an officer in the army and travelled far and wide. He had no kids of his own but would bring us gifts back from his tours. I think now they would for sure not let him give us things such as kukuri knives and other souvenirs from various countries. Dad took us back to Mum’s, on the doorstep I remember Mum giving Dad a big hug. I don’t remember my emotions at all really. I went to school as normal on the Tuesday and it was on the way home that I realised the enormity of what happened because it was on the front page of several newspapers with his picture which you couldn’t miss. We didnt spend a lot of time together as he was away most of the time but looking through his photo albums which he kept throughout this life as a sort of diary I realise just how much of packed life he lived. In a short 36 years he did some of the most amazing things. When he was home on leave he would always make time to spend with us.

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The comment that went with these photos made me smile. The first one was Dermot meeting me for the first time but keeping his distance. The second photo was ‘somehow ended up with babysitting duty’.

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This was taken before we left Granny and Grandpa’s when Dad got married to Carol. My second cousin Fio is the other person in the picture.

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Uncle Dermot with me and my younger brother.

I really enjoy looking at his photos. He makes me feel very proud that he was my Uncle. All he achieved is amazing. It is scary to think in 3 years time I will be the same age as he was when he died.

dDcNhrJkRVaw4BiAiXXDxA.jpgFor a few months I think Dermot was stationed at Edinburgh Castle. I recall thinking it was amazing that he was living in the Castle and was able to take us round. The stick my brother is holding is Dermot’s officers cane.

Not only did Dermot die on the 14th December but last year Granny also died. There is something rather special about her dying that day. I don’t think she ever got over Dermot dying. He was so young, how does a mother ever get over the death of a son. I don’t think you ever do.

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Since my Grandpa died I became a lot closer to my Granny, spending time with her, tasing her out to different places. Throughout all the troubles she always had my back and would look out for me. I never thought she was going to die when she did but there was something so peaceful about it. I got a phonecall about 3 in the morning that Granny was struggling to breath. She had a bad chest infection which was making her asthma worse. I went to the nursing home in the middle of the night and sat with her waiting for the Dr to come. She had some nebulisers and it settled her chest really well. So once she fell asleep I left and got some sleep. I visited Granny after work and she was brighter, and I wrote some more of her Christmas cards which she was desperate to get out but didnt have the energy to write them so I did them. An hour or so passed and she got tired so I left and posted the cards. Just over an hour later I got a call from the nursing home to say she had died. I was devastated- it was so quick, I had only been there just over an hour ago and she was chatting to me and now she was gone.

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(I love this photo of Granny aka Great Granny Annie proudly holding baby James)

I took a lot of comfort from her dying on the same day as Dermot died and also she joined Grandpa who she dearly missed as well. I do miss visiting Granny and all her quirks- she drove me round the bend a lot and could get so argumentative at times when I just give up and say yes!!!

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The 14th December is a day I find really quite hard but reflecting back on memories and the good times makes it that bit easier. I know one day I will join them as well and be reunited with Uncle Dermot, Granny and Grandpa.

I found this photo of Uncle Dermot in his photo albums. I love the silhouette and it reminds me of the soldiers who are gone but not forgotten. Uncle Dermot and Granny may both be gone but they will never ever be forgotten and Grandpa won’t be either.

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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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Venting frustrations…..again

Everything seems to be a bit negative just now and I really don’t like it but I do find writing down things that bother me cathartic and really help get them out my head and mulling over them. It is often things I won’t speak to anyone about as I think people would be bored of hearing me moan but also they really have absolutely no understanding of what it feels like sometimes.

My biggest issue I have with my asthma is that there is nothing I can say caused it to get bad. I have not always been a perfect patient and not always taken medication as and when I should (I learnt my lesson with that and now keep to a strict regime) but I desperately wish there was a cause for it to have got so bad. No matter how much I try I really cannot come to terms with the fact that there was nothing that I could really do to prevent this. It just happened.

 

I am hugely anti smoking yet so many of my family smoke and they don’t get that they take their breathing for granted. They have all seen me have asthma attacks yet they still smoke. They also don’t think when they light up and leave a door open that it will bother me, they don’t think that the smoke stays on their clothes can have an effect on my breathing, they just don’t think because they take their ability to breathe for granted. If I make a fuss that they have lit a cigarette around me and I get a face full of smoke they get all annoyed and tell me to go away, I am the one that ends up moving and having to stop what I am doing to accommodate them when they are inflicting something I a) chose not to do and b) something that negatively affects me. I would never wish my asthma on anyone but sometimes I would love for them to feel what it is like for me to breath on a daily basis but also when I am near smoke of any kind. It is horrible and to know that this is your family members that are doing this is awful and they just don’t see it. Years down the line they will have damage to their lungs and suffer the consequences of it but weirdly in my mind at least they have a reason for having bad lungs. It was what they chose to do to themselves so they need to live with the consequences of it.

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For me I don’t have that reason or any reason. I have just bad asthma that wants to control my life and requires medication several times a day to keep it in check and be able to breathe adequately.

This now is a total moan- even more than what I have just written but those that smoke and then they get a cough or cold hey feel their life has fallen in. Someone said to me that so and so was not well and had an awful cough. I turned round and replied that if they chose to stop smoking or smoked less Im sure they wouldn’t feel so unwell or have such a bad cough to which I was told I was not being very sympathetic or supportive. But hello….they chose to do it. How can I be supportive or sympathetic to someone who will most likely not give two hoots about lighting up a cigarette and won’t care who is around and who it is going to bother.

I really hate it if you can’t guess. It seems to be more prominent now as well. Everywhere you go there will be someone smoking in a 5m radius of you. Its disgusting but god forbid you make a fuss. I remember once needing to get into a restaurant but a man was smoking in the doorway. When I asked him to move so I could get through avoiding the smoke I got a whole heap of dogs abuse for it. Smokers think it is their right to be where they want and smoke without giving a care to anyone else.

This brings me onto the ridiculous idea of having no smoking on NHS sites. I still can’t believe that I really don’t agree with it and wish they would reinstate smoking. Now I can’t walk around the hospital grounds without coming across someone hiding behind a corner trying to be out of site smoking because they are too lazy to go off site. At least before when there was the smoking shelters you could avoid them but now it seems like no where is safe. It makes even getting from my car and into the hospital more hazardous than it was before.

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YEAH RIGHT!!!

I am such a grump but if you hadn’t guessed smoking it really getting to me just now and I want to scream at people who smoke. I would love them to do a day in my shoes and Im not even that bad compared to many people. I should be lucky I have the health I have as so many have it worse than I do but just now I can’t let it drop and I keep getting so wound up by it. I am hoping that by writing it down and getting it off my chest then I will feel better for it.

Fingers crossed!

#aworldthatcanbreathe

Today I met Ron and Linda MacDonald, the parents of Lydia MacDonald who tragically died from an asthma attack in June this year. I remember reading about this in the newspapers as Lydia’s wee boy was left in her flat for a few days after she died. At the time of reading I thought ‘not another one’. Another one being another person who has died as a result of an asthma attack. I felt for her parents at the time as no parent should loose their children.

Rather than sit back and do nothing, Lydia’s parents have set off on a campaign to both raise the profile of asthma and how dangerous it can be but also to fundraise for vital research which is chronically under funded. I am totally in awe of their strength, as in a few shorts months they have achieved so much awareness and want to continue with this.

I am so glad to have met Lydia’s parents- I was a bit apprehensive as asthma is a subject very close to my heart and one I can get very upset about as feel it has taken so much away from me. I was not sure if I would be able to keep my emotions in check. Part of me thought I shouldn’t show my emotions as I am still here. I still have my family- parents, brothers, sister, grandparents, nephew and niece whereas Lydia’s parent don’t have her and her son doesn’t have a mum. It is heart breaking thinking that. To know that someone so full of life had it all taken away.

So many things that both parents said resonated with me a few of them are:

  • there are so many different types of asthma
  • no one really gets how bad asthma can be not even friends
  • despite having bad asthma wanting independance
  • unless you have suffered an asthma attack you have no way of knowing how terrifying it really is
  • its not just asthma
  • asthma kills far too many people

These are just a few things but these are the things which people need to read and take on board to stop more families going through what Lydia’s family have and are going through.

I briefly had a look at the page called Lydia MacDonald Tribute fund for Asthma Research UK on Facebook and already the plans and party in the future appears to be gaining momentum and there are a huge number of comments in support. I will endeavour to support or help in anyway I can to raise funds or awareness about asthma. Lydia’s parents mentioned about getting all the communities together to one huge event with everyone working together as it is all for the same cause.

A phrase I heard several times from Lydia’s mother was that she just wants to to help make it a world where you can breathe. I am not sure if this the tagline so to speak for what they are doing but I have used it as a hashtag in my twitter when tweeting and also on various other social media sites to raise the profile of what Lydia’s parents are doing for people with asthma. The hashtag is:

#aworldthatcanbreathe

Understanding how stress can really impact on you physically.

One of the triggers for my asthma is stress. I often feel that I just jump from one stressful situation to the next no matter how hard I try to avoid it. I previously thought i was really weak because stress could have such an effect on my physical health. There are still so many days where I won’t accept that stress could be what is contributing to my feeling rubbish and my asthma being so unstable. Slowly I am changing my way of thinking and actually seeing that the more I fight against the idea that stress is making my asthma bad the more stressed I am actually getting as I am trying to find some other cause. Stress is not the only trigger for my asthma but it is one of them.

One of the real benefits I have found from going back to my old consultant is that she knows me really well and she can tell if I am stressed etc and will tell me straight up what she thinks. Even if I try to convince her otherwise I must admit she is right. She sent me to see a psychologist which once again I tried convince her I was ok and didnt need to go but I am glad I went. It helps to get different tools to use in everyday life to minimise the physical effects stress can have.

Over the past while I have been really struggling with all aspects of life I guess in a way things just got on top of me. I think mainly because you do something to help someone and basically you get kicked for it leaving me thinking I made the worse decision in my life. I kept these thoughts to myself and it really did eat me up inside until a really small incident happened which was the straw that broke the camels back. I had a very long chat with my step brother and sister and law and did a lot of thinking and came to the conclusion I need to look out for myself and do what is best for me in doing this others may get hurt but I am getting hurt and not only mentally but it is having a bad effect on my asthma. It infuriates me when someone who is meant to be someone you trust and is family but can screw so many people just for their own gain. I need to do what is in my best interest so after a lot of thinking and writing various letters to work how best to say what I need to.

I have noticed a difference this week as I feel so much better and I think its because I don’t have this weight and regret on me anymore. I have been sleeping so much better, been able to play softball with my team  as well as going out for dinner after the match. I was also able to play golf after work a few times too. Being able to do this things have boosted me and I have been able to forget about my worries. I hope the situation sorts out and if it doesn’t I know I have done what I need to to alleviate my stress.

Now I am looking forward to more good health and enjoy the summer!

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.