#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

Emotions and detachment

This evening I feel totally drained and really emotional but the feeling is strange it is almost a detachment from what I should feel. I can’t really describe it. I think it perhaps is a coping mechanism I have when dealing with a certain situation I don’t like and don’t have a choice to avoid.

What am I talking about?

An asthma attack. Previously I have written about how my method of coping with life threatening asthma attacks is to not remember what happens. Until today I never thought of the implications that this has. By not only blocking out my own memories of the attack I also block out my own memories of my parents worry and looks on their faces and how they feel knowing their daughter can’t breathe and could be heading to intensive care if it doesn’t get turned around.

Today I met 2 inspirational people who in the face of a very tragic situation are trying to make a positive. Their daughter died of an asthma attack. She was a similar age to me- just a year younger. At her funeral they were shocked at how many people didnt know how bad asthma could be and they have pledged to raise money for asthma research to help find that cure that everyone with asthma hopes for but no one knows where to find it. I was in awe meeting them as I had no idea how they could be so strong in such sad circumstances.

Listening to her mum talk made me think of my parents and what they must go through if they have to take me to hospital or when they are sitting in hospital with me. I have never even thought about how they feel when seeing me not able to breathe. I block it all out so I don’t remember any of it. I am scared to ask them if they are scared or worried about what may or may not happen. Part of me wants to know but then i am scared. I know I can’t stop having asthma attacks but the thought that those who protect you fear for you makes me upset. It is like inflicting pain but the last thing you wanted to do was cause it.

Hearing Lydia’s parents experience made me grateful that I am here but at the same time it has highlighted the very reality of asthma particularly when they talked about how she was fine and looked fine but the next minute they could be calling an ambulance. This is what it feels like for me when I have an attack. I never knew others had attacks like that. It feels when reading about attacks that everyone’s are different but for the first time there is someone whose family described their attacks the same as mine. It has made me want to be more vigilant with my asthma control. I am already doing my utmost but I still have days where I do things I shouldn’t such as a few weeks back playing goalie at lacrosse or going into work when I really should have stayed at home.

I have lost too many friends to asthma and this is another family who has lost a daughter and mother because of asthma. I want to help in any way I can to raise the profile of asthma and how serious it can be a even friends who I have known for 20 years don’t know how serious asthma can be and they should. I don’t want to use shock tactics but asthma does kill and its the reality. So…..

#aworldthatcanbreathe

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.

A cure would be great but control would be better.

Anyone with asthma or even any long term condition wants a cure to be found for their condition. A cure would mean so much, less medication, no hospital appointments, less time miss off work, ability to get travel insurance, do the work you want, play the sport you want, sleep a full night, not feel isolated, be independent, no hospital admissions, able to not live in fear, have no fear of dying or friends dying, being able to have a life again.

However, as anyone with a complex long term condition knows a cure is not just around the corner. In my lifetime there has been one asthma specific new drug and another which can be used for asthma and allergies. That is 2 medications in 29 years. On average it takes 17 years just now to produce a new medication to treat asthma.

Yesterday I was at the Cross Party Group meeting for Asthma with Asthma UK at the Scottish Parliament which was a great meeting. It was focusing on the need for more research into asthma. It has been chronically underfunded for years and years. However after the NRAD report into asthma deaths there have been some fantastic opportunities for Asthma Research. The Asthma UK Centre for Applied Research was launched, Asthma UK is involved in the European Asthma Research and Innovation Partnership (EARIP) and asthma has become a condition which the FARR Institute is going to use as a blueprint for the way in which long term conditions are diagnosed, monitored and treated.

It is fantastic that there are some world leading researchers wanting to make a difference to lives of people with asthma. One thing I did notice yesterday was the focus on a cure which was talked about by one speaker. I would love for there to be a cure and for a reason to be found of why asthma is so complex and difficult to treat in some people. The more pressing thing is to find a better way to manage asthma. By managing asthma better the quality of many asthmatics life is greatly improved.

This is what I love about AUKCAR. I may be biased but they recognise the immediate need for asthmatics rather than focusing on discovering a cure. The need for better management, reducing hospital admissions due to asthma and the most important reducing asthma deaths.

By being part of the CPG and AUKCAR I can help make a difference. It may be small but small is better than nothing!

Are you your illness/ condition?

Recently in a lot of groups, on Twitter, Facebook and Instagram there have been various projects or statement about not being your illness/ condition and not letting it define you. So many people have been jumping on this and saying how they are not their condition, or that their condition is part of them but not who they are.

I’m not sure I agree with this. Asthma has dominated my life and dominated it even more so for the last 11 years. If I was to say I am not my condition or my condition does not define me would be a blatant lie.

I am my asthma and asthma is me. I will never be able to get away from it or have some memory of asthma around me everyday. As terrifying as having asthma is, as life limiting it is I am embracing have it. There are some really rough days where I wish I didnt have asthma. Those days where it is a fight to get every breath and just drinking is a mammoth effort I do wish I didnt have asthma. Then there are the days when having asthma doesn’t inhibit my ability to do anything as long as I take my inhalers, tablets and nebulisers. Those days are great. With the good days come the bad too.

Wishing for a cure is something I do everyday. To have a cure would mean my body is not crippled by side effects from taking prednisilone, my heart rate would drop below 100, I wouldn’t have a constant tremor from relying on short acting beta agonists, going outside I wouldn’t have to worry about what may happen which could provoke an attack, i wouldn’t need to plan my day around medication, I wouldn’t be on first name terms with my pharmacist, I wouldn’t know all the nurses in various respiratory wards around the UK. These are all things I wouldn’t have to do if a cure was found for asthma.

BUT

A cure is not going to come in the near future as nice as it wold be so until then I embrace having asthma. It is me, it is a massive part of my life. I hate it but at the same time having asthma has given me so much to live for. Just by having severe asthma I have done so many things I never would have thought about doing. My life is now defined by having severe asthma. My work was chosen based on my asthma, my volunteering is based on having asthma, my work with the research centre I would not do if I dint have asthma, my involvement in my lacrosse club would not be what it is if I didnt have asthma. I have no idea what my life would be like, Im sure it would be very different but would it be different in a good or bad way? Its a question I can never answer and I don’t want to know the answer.

The only thing I do want just now is to not have so many life threatening attacks which land me in the resus room and weeks in hospital. Those are fights I could do without. I would also love for my consultant to be able to over me different treatments to try and not need to take my case to a group of experts to try and find some kind of treatment to give me some life back.

In all I am my condition. To say Im not would be a lie. But I am proud to be defined by my asthma. Not having asthma I wouldn’t have done all I have. It would be nice for it to be a bit better controlled but in the future it will be.

What I want to say is all those who don’t want to be defined by their condition think about what you have done because you have it which you wouldn’t have done otherwise? Our conditions are part of us. They make us who we are. The stigma around having them is hard but when you embrace it mentally you can deal with it so much better!