Getting it off my chest.

The small hours of the morning when generally I wake up coughing and pretty wheezy like just now, I find I start thinking about what I am doing and what the point of it all is. This is not going to be a particularly positive post but by getting it off my chest means I will hopefully not drive myself insane with thoughts and trying to work out solutions.

2 or 3am I am not particularly rationale in my thinking as I feel sleep deprived, exhausted and fed up. It is a vicious circle just now one I am hoping to break soon. But anyway thats not the point of this post.

I am posting to my blog quite a lot just now mainly because I have been very active in everything I am doing with the centre just now and by blogging about it means hopefully more people will see the work the centre is doing.

Tonight I found myself getting wound up asking myself what is the point of throwing all my energy I do into trying to make my life better, by helping by peer reviewing articles, being part of patient advisory groups with the end goal of making a change for people with asthma. Just now I want to throw the towel in because what is it all for.

I know it is all over inflated because I am so tired and getting frustrated with my own health.

So what is getting me wound up?

I am part of a number of different support groups online for people with asthma of varying degrees. Recently there has been a epidemic of photos being posted with pictures of a pulse oximeter showing low sats mostly followed by comments such as ‘getting fed up of this’. I just want to scream and shake them.

Asthma is a reversible airways disease therefore unless there is another complicating factor such as bronchiectasis your oxygen saturations should be normal unless in a very acute phase of exacerbation. If you have low oxygen saturations you should have got help a long time ago. This will not be totally accurate but I believe we have an oxygen reserve which is why oxygen saturations will remain relatively normal for a while during an attack before dipping and dropping down. Therefore instead of posting photos of low oxygen saturations you should be getting help. I have voiced this several times to which I generally get an ear full in response and told I don’t know the situation and that they hate going to hospital. It is not exactly a barrel of laughs going to hospital but it is sometimes necessary. By getting help for uncontrolled asthma or an asthma attack promptly will mean less stress put on your body, less medication required to correct your lungs to get them better, shorter time in hospital and a significantly reduced risk of death.

It feels like a massive uphill struggle to try and make the medical world and beyond take asthma more seriously and I am not surprised. How can we as asthmatics expect others to take it seriously if we don’t.

It is awful having a chronic condition which dictates everything you do in life but unfortunately thats life and we just have to deal with it but by being stupid about it and moaning that your asthma is bad and not doing anything to correct it is just asking for trouble.

3 people every day in the UK die from asthma. Thats a shocking statistic and what is even more shocking is that most of these deaths are preventable. Part of me thinks how can they be preventable if asthmatics don’t take asthma seriously. Staying at home with oxygen saturations in the mid to high 80’s is asking for trouble and I have very little sympathy for people who do that. I have not always been the most sensible but this was about 12-15 years ago before we knew just how bad asthma statistics were and how easily it can kill someone.

When you know people who have died of asthma it makes it even more real and highlights just how serious a problem it is. I have had asthma attacks where I have fought for my life. I felt like I just wanted to give up because I was so tired. I have been terrified and regularly have nightmares about asthma attacks.

A change needs to be made about the seriousness of asthma but that change first needs to be made by those who have asthma and then others will follow suit. Why should others take it seriously if we don’t.

I just hope people will change. This is why I feel like throwing the towel in. Sometimes the work feels like it is for nothing. But then the rational side of my brain kicks in and even if the work the centre does changes the life of just a handful of people then it has helped. It has made a difference so this is what drives me forward when I feel so low. That there will be people out there who will change and strive for a better life and better asthma control.

2 thoughts on “Getting it off my chest.”

  1. Completely get these frustrations and I’m pleased its a world I am thankfully more removed from now! In my mind I just decide a lot of the time that these people simply can’t be that ill. To saturate so poorly if it is ONLY asthma, would not allow a person to stay at home – we have survival instincts for a reason. I fully understand people have other affecting factors but if they’re not willing to share these then why post at all. I’m lucky that I can just dismiss it but I can definitely understand how it must feel like a huge hit against everything you are trying to achieve. Hopefully, via the methods you use, the messages of how serious asthma is are getting across to the important people (doctors etc)

    1. Thanks for your comment. Im glad Im not alone in how I feel. It is frustrating but I think this frustration is blown out of proportion when its the middle of the night and all you want to do is sleep!!! Im lucky that I have such a good position to get people to recognise just how serious asthma is and no matter how mild or severe it effects everyone differently but it does effect everyone. I can express these feeling to the people that mater. To the people who have a massive influence on what research in asthma is done and where the priorities lie! I hope you are well. I do enjoy readying your blog to- perhaps enjoy is the wrong word but it is great you can put into words the real impact of what is happening and share your journey and experiences with everyone through your blog.

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