A big thank you from myself and Karen

Myself and Karen (Captain at Craigmillar Park Golf Club) want to thank all those who participated, volunteered, donated prizes, and helped make the day such a great success. A huge amount of money was raised and it was way above our target but the money everyone donated and help raise will go towards ground breaking developments in asthma research to help produce new medications to help everyone with asthma. A thank you to Lisa who introduced our video and her son for his expert filming!

Everyone knows someone with asthma but not everyone knows that 3 people die every day from an asthma attack. Since the publication of the National Review of Asthma Deaths in 2014 there have been approximately 1600 deaths from asthma in the UK. This number is far to high. I owe a huge thanks to all those who have helped save my life when been admitted to hospital and ended up in intensive care or high dependancy but I have ad some friends who have not been so lucky and have lost their life to asthma. The public perspective of asthma needs to change as many think asthma is just about taking a blue inhaler but it is far more than that. I can control and dictate your life in ways you never think are possible. Even those who have mild asthma and will never think they are at risk of a life threatening asthma attack but they are, anyone with an asthma diagnosis could potentially be at risk from asthma.

Please watch our video below.

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.

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!

The summer weathers here but no everyones happy!!!

Normally when the sun comes out everyone is rejoicing but there is that small group of people who really do not like it. I guess Im sort of one of them. I love the summer. It means I can wear my shorts and enjoy the long summer nights but with that comes the suffocating feeling of the heat and humidity.

For the past few days it has felt like the air is really thick and that I have been wearing a compression vest squeezing my chest. Im not wearing any vest it is just my lungs reacting to this new weather that we are having just now. I noticed this most yesterday. I was staying up in Crail overnight which is on the east coast of Scotland. The sea air was refreshing and breathing was easy however as I drive inland and home I found my chest felt tighter and tighter and it was due to this warm weather. There is sense in the old wives tail that sea air is good for a bad chest. I should retreat there for the summer months.

I checked the weather forecast earlier and I really wish I hadn’t. there is thunder and lightening forecast and this fills me with fear. Last time we had similar weather followed by thunder and lightening I ended up in the high dependancy unit having suffered a really bad asthma attack. It was brought on by changes in the air pressure. I was terrified during this attack and unusually I remembered most of it. Inparticular I recall one of the nurses who I know really well sitting with me all night because I was so scared and just couldn’t get my breathe and not getting much relief from medication. I can never thank that nurse enough.

This apprehension I don’t think is helping my chest much at all. I have taken an extra nebuliser tonight to try and get some extra relief and I have my fan on to circulate the air and make it a bit cooler in my room to sleep. I am hoping things will be ok and all this worry will be for nothing.

In other news I am still having a bit of a hard time dealing with not being able to play golf how I want and having to miss things. Its getting to me a lot as many are starting to comment about how I am not the person I used to be. This is quite a complex topic so I will save it for another post.

I hope everyone else with twitchy airways is doing ok tonight and not effected to badly by the humidity. I do hope that if we get the thunder and lightening then the air is clearer afterwards.

Why I took a break

I posted earlier that I was taking a break because I had stuff going on. I still have stuff going on but am making more sense of it now and coming to terms with decisions I am making to better myself in the long term.

It may not seem like much to some but sport is my life. Slowly that world of sport has grown smaller. There was a time when I would never say no to any sport (except swimming- I would actively try and avoid it). I would put my hand to anything, would join any team and would voluntarily run cross country because of my love of exercise.

My love of sport has not dwindled in the slightest. I love sport. I would submerse myself in the sport world if I could., eat, drink, sleep sport. That was me. My career was to be sport. My life was sport.

11 years ago that changed. In a sense I don’t think I ever grieved the loss I felt when sport was no longer my life. My body was no longer able to skip, hop, run and jump when it wanted. It required a cocktail of medication to just convert oxygen into carbon dioxide let a lone play 90 minutes of football 80 minutes of rugby, 60 minutes of lacrosse, run 13 miles and walk 18 holes of golf.

In all honesty I have still not accepted that I won’t play sport like I once did. There is always this tiny bit of hope that one day my asthma will just be better and off I go. I often think if this is why I test myself just to see how far I can still go, but in seeing how far I can go also highlights how far I can’t go at the same time.

Last week I wanted to shut myself off from the world as the consequences of something I did was too unbearable for me to process. The golf season is well under way. I have all my cards in for handicap. It was a beautiful evening and I was due to tee off at 1730 in the ladies medal. (My course is on the side of the hill so quite hilly). It was a lovely evening so I decided to walk. I didnt want to ride around in a buggy on such a nice night. I made it up the first hill my lungs on fire, a rest, then the next hill, a short break and as the holes continued the more hills and the more fire I felt in my lungs, the more I gasped for breath, and I just wanted to collapse. I was having to hold my breathe to play my shot and then breathe to enable me to have some control of what I was doing with the golf ball. On the sixth hole I hit 2 fresh air shots in a row, followed by a sclaf and various other mishits. It was time to call it a day. 1/3 of the way round the course it felt like my body gave up and the more I willed it the less it responded. I was devastated.

The rational side of my brain knew I wouldn’t manage but I just wanted to walk. It was so nice I didnt want to miss the lovely evening so I walked. Perhaps thats silly decision has altered my path for the rest of the season- I don’t know if it is a good or bad thing?

Many friends at the golf club questioned why I didnt go in a buggy. I should have yes but when your one of the youngest playing and not able to get yourself round there is a sense of embarrassment for me. My friends accept it as that is whats needed but for me I feel different.

As a result of this choice I had a long think about what I wanted to do. I wrote and re wrote emails and different ways of saying what I wanted but couldn’t find the right words. But basically I emailed our team co-ordinator person and decided to take myself out of the team for the season. Next season may be different but this year I can’t deal with it. The golf I can manage but  it is seeing those who are so much older manage so much better and I need time to deal with this. As I said earlier I need to almost mourn the freedom I once had which has been exchanged for a life of planning.

Many may read this and not understand where I am coming from and think I am not that bad off. In the whole scheme of it all Im not bad off. I have my life, independence, a supportive family so I don’t have much to complain about in the big picture but just now this loss is a big picture for me. It feels like each year it is something else that is being given up, football, rugby, hockey, running, lacrosse, the list goes on. Golf and skiing are becoming limiting. When skiing starts to go that will be a very dark day as my one true passion is skiing. I am at one when I am on the mountain and I feel at peace. I am not going to think that one day I won’t ski but at the same time I am not going to think I will always be able to ski because I thought golf was a sport I would always do without any issue.

As I finish writing this I just wish I could have something to blame. Even if it was something that was self inflicted like smoking or anything but at least then I could attribute blame to something and not have a question mark when I ask why is my asthma so bad and hard to control. There is no answer just now and I don’t know if there ever will be. One day I hope and pray.

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.

1st Year in 1 year!!!

Yesterday i complete first year of my nursing course and managed to do it in one year!!! The last few years have been really tricky and I have had to complete my courses for each year over two years instead of one year so to be able to stay with my peers is such a boost for me. I am over the moon. I have had an awesome year. It has had its up and downs as to be expected but it has gone so much smoother than I thought it would have gone. I have made some great friends and my placements have all been brilliant.

I now face second year which everyone seems to stay is so hard and it really steps up a gear so I will need to start working and really dedicate proper study time to it and not jsut try and slot it in around golf and work. golf and work will need to fit in around studying I think.

I have leant so much about myself this year as well. I was very low in confidence before I went back to uni to start my nursing. I think mainly because to me I had failed in my sports. My asthma had one and I found this hard to deal with. I was scared that once again my asthma would win and it would prevent me from completing my course and becoming a registered nurse. It hasn’t. I have made a conscious effort to be more open about my health to people and not just to my online community and also accept when I need help and when I need to take time out and just gather myself and then get back to it. This has made a big difference although I am still trying to get to grips with sometimes just blanking a day in my diary to do nothing…I am not very good at the doing nothing part but I will get there.

I still have my bad days with my chest but thankfully they are becoming more manageable as I listen to my body more. I still have a lot of issues to sort out with my consultant but there is part of me that seems to get scared when i go to see him and just don’t talk about a lot of it. Mainly because I am fed up of going back and forth to the hospital and kind of hope that if I say I am fine he will just discharge me from his care- although this is a long shot and I know that this will not happen any time soon if at all!!!! I have my con on Monday and have a few issues i need to discuss but am tempted to go and see my GP with them as I am not sure if they are asthma linked or not. I keep fainting a lot and not sure why. I am not one to faint and never really get headaches but recently I have been getting a lot of headaches and fainting about 9 times in the past few months which is freaking me out a little bit. I am wondering if it is my new meds or what. We will see what Monday brings.

In the mean time I am on the golf course tomorrow!!!! who would have guessed the first free day I have and I go to play golf!!!!!