Looking back at #HealtheVoices19

The past few weeks have been really tough, Im not going to lie but there have been some very dark times and hard times. Although my lungs and breathing have been manageable it has been bad enough to limit what I am doing and I have had to increase my steroids again to get me though. Mentally it has been tough. Getting new diagnosis’s is tough. My last post I spoke about how steroids are the gift that keeps on giving but they are also giving me life so I have to take them.

Social media has been such a good support network for me particularly on days when I just can’t get out and about.

One thing I have noticed is the friends I made while in Dallas are the ones who are always there with comments or free to chat. I cant believe that I only met most of these people for 3 short days but to me I feel like I ave known many of them for ages. I am so thankful for the friendships I have made and just wish I was not the other side of the pond from them as I would desperately love to see them all again. Their support is unwavering. I wish I could give them the same support they give me. I am not sure if they know the impact they have had on me. Every single one of them has their own story to tell, own problems and challenges yet they still find the time to look out for others and wit their advocacy work they are improving the lives of others.

I realised I have not posted many of the photos from Dallas so below are some of the photos from HealtheVoices!!

This is just a small selection of the photos I have from HealtheVoices but they are all part of my tribe. They get me, they know what to say and they accept me for being me and who I am.

Thank you everyone!!

May is asthma awareness month!!!

May is asthma awareness month. Asthma is a disease which is so misunderstood. Many will live with asthma quite happily and think ‘its just asthma’ but then there is the small portion of people who battle asthma everyday and just getting up in the morning is achievable because of a concoction of medication and then sadly there are those who live with a empty space in their family where a loved one has died as a result of asthma.

So this month my aim is to try and out something everyday which will show what you can do despite asthma, what asthma has stopped people doing, what asthma has caused, what we have learned from having asthma, the day in the life of someone with severe asthma, work and asthma, sport and asthma.

But for today I am going to start on a high and write about the good side of asthma, its not a great disease to have and has dictated most of my life but having said that if I didnt have asthma I would not have had the oppertunity to do some of the most amazing things which I am so proud of.

Just now my biggest honour really is to be part of the ‘Healthcare Hero’s’ Book. I received an email the other day titled ‘Getting our Hero’s Together’. I am hugely proud to be part of the Healthcare Hero’s but have difficulty thinking anything I have done is special. What I do is to try and benefit people but essentially as I have said before if I didnt do things I would curl up in a ball and become depressed about how much asthma has taken from me and what it has stopped me doing becoming a total recluse. To be in a book with some amazing people is a true honour. Just to be along side a man who engineered a device for his own heart so he didnt have t live a life on blood thinning drugs, or the amazing lady behind compassionate care who has sadly died but her husband is continuing her work. To read the stories in the book or online is eye opening just seeing what people will do. So tomorrow I am going to Manchester to meet up with the other Hero’s from the book and for me I will be celebrating World Asthma Day but also overcoming a really difficult time for me personally so by getting myself to Manchester will be a huge achievement.

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Having a piece of writing published in the British Medical Journal was also pretty awesome. What makes it more awesome is that I always struggled with writing throughout my school career and told I was lazy but it was not until I went to do my second degree of Nursing that it was discovered that I was dyslexic and pretty badly which meant I had a reader and scribe in exams and was given all this help to get me through my nursing. So maybe I would have done better than an E in English at school had I known I was dyslexic. I now have a purple cover when reading books and it makes life so much easier. Back then I never thought I wold ever be a published writer but I am. What is even greater is that it was a learning tool for Dr on how to treat an acute asthma attack and seeing this implemented in practice is awesome especially when I was in resus once and one of the Dr’s said they read this piece about the things asthmatics find helpful when having a severe attack. I was able to write to him on the paper and pen he offered me to say I wrote it. I was so chuffed that it has had an effect on some Drs practice.

My next thing which has helped me through the last few years is my involvement in Scotland Lacrosse. After moving from a field position to the goal (18years after last stepping in a goal) I never thought much of it but being able to play for the Scotland B team at Home Internationals was awesome but then after having to stop playing even in goal I was able to take on the position of Assistant Manager which I was kindly given the nickname AssMan (short for assistant manager) which I have decided to own. I am one for nicknames and never been called my real name except at work and research stuff so AssMan joins Tux, Olive, Ollie (of all spellings), Liv, Livi (again many spellings), Wivvers, Wheezer to name a few, I am sure there are more that I have forgotten (or intentionally forgotten). Being able to go to Florida with the Scotland team in the preparation for World Cup was amazing and probably once in a lifetime experience, but I will be able to see them in action at the World Cup as I will not be with the Scotland Team but will be joining the Technical Crew doing match statistics for the World Cup so will be front and central for most matches- although I will need a lot of concentration.

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But my proudest achievement is being part of the Asthma UK Centre for Applied Research as a Patient and Public Involvement lead and helping facilitate SPEAK Asthma- the children and young peoples group. Having a role like this has given me a totally new perspective on research and opened my eyes to how much researching actually going on.  It has also given many other opportunities such as speaking at the Annual Scientific Meeting (and crying during my speech but at least I wasn’t the only one who cried!), giving a lecture to Masters students who are doing a Masters in Clinical Trials, I have been able to go to many different things at the Scottish Parliament and was invited to the British Government last year but sadly due to my asthma I was not able to. I have also spoken at events with GSK and learnt about new medications which are coming out and also now do work with Astra Zeneca for their Patient Centricity program. It is so awesome all the things I have had the chance to do because of the centre let alone all the things I do with them such as lay summary reviews, PhD application reviews, help PhD students, the list is endless and I love every minute of it even when not feeling 100% I still want to go to things as its such a great centre and has really given me my life back and given me something to do when I am not feeling great. It is putting a really big positive spin on a bit of a rubbish situation.

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I have things coming up in the near future which I am looking forward to such as the Usher Institute Showcase and being involved in things with the European Respiratory Society as well as getting emails from a variety of different researchers (not part of the centre but from all over the world) who have read this blog and want to get in touch.

I guess having things I am proud of really do keep me going when things are not so good. I was able to draw on these things when I was last in hospital and didnt think I was that unwell but was as my best friend thought I was drunk with the messages I was sending but the admission was really hard especially the 3rd time the ITU Drs came to see me and this was after being discharged from ICU but kept getting worse again and I really thought I didnt have the fight left in me to keep going and not let the attack get the better of me but thinking about all these things I am proud of makes the fight worthwhile- that and thinking of all the Scotland players as they do their insane strength and conditioning stuff- I guess asthma attacks are my version of strength and conditioning although an asthma attack burns and insane amount of calories as I found out from waring my FitBit during one attack!!!

But keep hold of the positive things in your life and these will keep you going and help you reach and achieve your goals no matter how big or small they are.

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(I got this bracelet from a really good friend who knows just how tough life is with rubbish lungs but this saying says it all!!)

#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