What words describe you?

Hero, warrior, asthmatic, advocate, inspiration, strong are just some of the words I have had people refer to me as recently. While I really appreciate them and am flattered I feel uncomfortable hearing them.

Some adjectives I can learn to adapt to such as advocate but others not so much.

The word health advocate a year ago is something I would never have applied to myself and a term I did not feel comfortable with. Over the last year I have got used to and embrace the term health advocate and will embrace it for years to come as that is what I am and I want to be the best advocate I can be not just for myself, or my condition but for all those with health conditions.

I think the reason I find some of the words so hard to accept is because I don’t want to be thought of as that. I have a chronic health condition that means I have to fight each day. If I didnt then I would be sitting at home doing nothing and that is not in my DNA, but also what life would that be.

Im also lucky this has been my life for so long that actually I cant remember what it feels like to feel well, every day I rely on a cocktail of medications but even that is not enough to make me feel “normal person” well.

I share my story about the ups and downs of living with chronic ill health to try and get more awareness about the disease itself, so others living with the condition know they are not alone and then also to show the real life struggle so that policy may change or new drugs might be developed so no one will have to go through the tough times that I have in the future.

When dealing with a condition that you don’t know when it is going to hit and take you out with an attack you need to make sure you are strong and not just physically but mentally as well. Getting through an asthma attack is as much about physical strength as it is mental strength. This mental strength which I put down to the way I have been raised but also my sporting background has allowed me to not only push through attacks but also push myself so that I get up each day and do something productive no matter how small it is as long as I have achieved something in the day I don’t care.

I am really flattered by some of the words people have associated with me and the way I have dealt with living with ill health. I don’t want to come across as rude or ungrateful as I know everyone is sincere and means it but recently I find it even harder to sink in as a condition I have always been able to beat is finally beating me and dictating my life more than it ever has before so to hear these words are more difficult.

Once I get back on my feet and know what is going on with my life then I will maybe be more accepting of the terms people use to describe the way I face situations.

#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