#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.

Craigmillar Park Charity Golf Day 14th August

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On Friday Craigmillar Park Golf Club hosted a charity golf day to raise money for Asthma UK. Golf club Captain Karen wanted to host a charity day and the fact that she chose Asthma UK was brilliant. She had said she never knew how bad asthma could be until she met me. I still can’t quite believe that the chosen charity chosen was Asthma UK.

Despite some very wet weather the day went ahead and it was very successful. With players arriving at 8am for bacon rolls before taking to the course to compete in a variety of different challenges- ranging from closest to the wiggly line to beat the pro. Raffle tickets were purchased by the dozen and the mulligans on offer were a very successful sale with just about every player buying them (only 3 per player and not to be used on the green!!). Golf was followed by a balloon raffle, lunch and presentation of prizes.

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For me the day was a real mix of emotion. I was so proud of my club hosting the charity golf day, proud of my captain for choosing Asthma UK and all the help which members of the club put in either by setting up the night before, rules official, manning desks, selling raffle tickets, car parking attendant, entering teams, getting prizes the list is endless and there are not enough thank you’s I can give to let you know how grateful I am.

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The day also brought sadness. After the lunch a video was shown about a young girl who died of an asthma attack and why it is vital to raise money for new treatments and the potential to find a cure. The video brought back my own experiences of life threatening asthma attacks, ending up in intensive care and fearing I have no more energy to continue breathing. It not only brought back my own fears but the memories of friends who I have made but have then died of asthma attacks or the consequences of. One particular person Dawn (pictured below) who taught me to follow my dreams and gave me so much encouragement when times were not great and I had long spells in hospital. She sadly died and it was such a waste of such a caring, charming, compassionate person. Asthma should not have killed her but it did and it is people like her I do all I can to raise awareness of asthma and just how much destruction it can do.

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I briefly spoke about my relationship with Asthma UK and asthma. I find it easier to show my relationship in pictures. You don’t always look ill with asthma unless in an attack. You can’t see diminished lung capacity and function, or the medications needed to keep you going. Instead I showed it in pictures. A collection of pictures from being in hospital, being at home and also my medication. Its a side of asthma that is kept behind a closed door. I think this is the most powerful way to show just what asthma can do.

When setting out the host a charity golf day we had a target of about £4000-£5000 and part of me didn’t want to put my hopes high. Asthma is not one the “sexy” diseases which gets loads of funding from donations. The lack of money in asthma research has meant that in my lifetime there has only been 2 new medications developed which I take but I still end up in hospital. No one really knows how serious it can be unless you know someone or have witnessed someone suffer a severe attack. I don’t think it has sunk in just how much money everyone donated on the day. It was not only the monetary donations but also the time put in by everyone. The total amount raised has not yet been calculated but we have superseded our target.

 

 

 

 

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(setting the balloon with AUK sticker smiley face into the air (not successfully) but I thought of those who I know who have died from asthma attacks and wished something too!)

The emotions from the day have been playing on my mind a lot. It has brought up a lot of memories I had intentionally buried and not want to deal with as they are too scary and also bring the reality of my situation to the forefront. My asthma is so much better now but is it better because I am not doing anything anymore or is it better because it is actually better and I can start pushing my body. It is like testing the water and seeing what I can and cannot manage.

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I owe a huge thanks to Janet (pictured left) and her PA who went above and beyond with entering teams, printing flyers, getting prizes donated. Thank you Janet!!

 

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Me and Captain KB at the end of a very successful day.

Thank you all once again. Look out for the final total raised.

There are some amazing people out there!!

Asthma UK logoThis end of this week is a really special day. Not only is it my Dad’s birthday but it is also the Craigmillar Park Charity Golf Day to raise money for Asthma UK. I never imagined the amount of money it would raise but have been bowled over today when I learnt that over £6500 has been raised so far and there is still 4 days until the actual day. Karen, Janet and the team from Craigmillar Park Golf Club have done amazing work to get this day to together and I hope it will be a great day and we will get decent weather for the day too!

Everyone knows someone with asthma but not everyone knows someone that has died from asthma. Recently in the press it was announced that The Apprentice star Stuart Baggs died as a result of an asthma attack at just 27 years old. I have several friends who died from asthma attacks or complications as a result of one. Asthma should not kill people and it should not dictate peoples lives the way it can for many. The money being raised at this golf day is invaluable and vital to continue funding ground breaking research to help one day find a cure for asthma.

A cure to me would mean freedom. It would mean a life with no medication, a life with no fear that I might do something that can cause me an asthma attack, a life playing sport again. It would just be the life I so desperately want but really struggle to have sometimes.

I am really looking forward to Friday and seeing the day unfold.