What do you do when it all gets a little too much?

Ask for help.

Living with a long term health condition comes with many challenges especially when it is a condition that comes with unpredictability and triggers out with your own control. The challenge of trying to live a normal life is tiring and it can feel like a full time job just trying to stay well.

Recently I have hit that breaking point of what else can possibly go wrong with me. Asthma has ravaged my body, I am not just meaning the side effects from medication but the actual asthma and having attacks its self has also left its mark and continues leaving its mark from poor vascular access which has left me with a leg that doesn’t work properly, the mental toll on attacks and being in and out of critical care to most recently finding out that I have either had a hypoxic stroke during an attack or the other option is a lesion on my occipital lobe on my brain. An MRI scan is pending and will confirm but I have had a battery of tests to work out what it is. I am plugging for the stroke option as then at least it has happened and I have had no real adverse effects from it (but fingers crossed it is nothing at all- this would be super).

For the first time I have noticed the impact my poor health is having on just daily living. I recently went to the wrong out patient appointment in the wrong hospital, I totally forgot another appointment and then I cant remember if I have taken my drugs or not. I can guarantee some of the drugs I have taken because they are in my weekly box I get made up from the pharmacy. My brain just feels like it has been put in a blender, put on full and then poured back out. My leg then causes me to have multiple falls and this causes other injuries too!

This is not the life of a 34 year old that just had asthma!!!

I told my GP this today. Well she kind of guessed it as I tried to tell her about the eye hospital I just broke down. I could not help it but the news at eye hospital was the final straw. The year was meant to be focusing on getting my health back on track, getting control of my asthma so I can return to working in the hospital but now my body is in a worse state than it was when I stopped in Feb last year. At least last year I could walk without the need for a splint and a walking stick and could drive out-with the city!

So what to do from here?

My GP is really great and I am really lucky to have her. She gave me details for a new app that is out called Feeling Good. It is a program of tracks you listen to over a 12 week period which I think are similar to mindfulness. I will find out! I think once I complete the course I will write up a blog post for it. Anyone can get the app but some stuff has to be paid for unless you get a code from your GP surgery.

I like to try and keep myself busy as well. I take Ghillie out for a walk every morning come rain wind or shine I head out. This is really good as gets me moving, blows the cobwebs away and exercise releases endorphins so you get that little bit of positivity from it. Also I love seeing Ghillie running around having fun with the other dogs and I have made a few dog walking friends too- everyone is a creature of habit wether we think we are or not.

I need to remember that whatever is going on I am not being affected by it. Apart from some loss of my peripheral vision I have no other issues. I do need to acknowledge that my body is not ok but I have a lot of positives going on and events coming up that I am speaking which I am really looking forward to.

All these situations have given me some more drive to continue with my advocacy work as asthma is still so under recognised and not thought of as a disease that can be that bad. Asthma right now is destroying my body and I don’t want it to do the same to others.

Severe asthma- family and friends misconceptions.

I was asked to write this blog post by Asthma UK as their report about severe and difficult asthma has just been published and the statistics are shocking. Asthma is not taken seriously or respected, some people don’t take their medication as they are meant to for a variety of reasons but this can be fatal. Those with asthma and those who know people with asthma need to understand just how serious it can be.

I consider myself very up to date with the latest asthma treatments, ensure I taken my medication as I am meant to and when I am meant to. I ensure I step up and step down my medication as my symptoms ebb and flow according to my personal asthma action plan. Even with my diligence to treatment and keeping myself well it is sometimes no where near enough and asthma wins over you, leaving devastating consequences such as death, the need for life support machine, very toxic drugs to relax the smooth muscle int he airways.

I have lived with asthma almost all my life. Over the years it has progressively become more difficult to control and severe which has impacted my own life and also my families lives as well.

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To manage my asthma I am in the very fortunate to have a team of specialists at the hospital who work hard to ensure I am on the best medication and most appropriate treatment aiming to control my severe asthma as best as possible. Despite this support and regular contact with the team my asthma remains severe to the extent I was put in a medically induced coma and was on a life support machine just under a month ago. I am sure if I did not have the team of specialists then there is a high chance my life would be very different if I was to have a life at all.

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Having severe asthma has resulted in many life changing circumstances from the sheer number of medications I require to control my severe asthma but then also medications to treat or prevent the side effects caused by the medication required to help my breathing. I currently take a total of 37 different medications, 14 of them are for asthma and 23 are for the side effects mainly caused by years of oral corticosteroids. I have also had to give up playing sport, change my career and now have had to give up my career, but the biggest impact has been on my family and close friends.

Living with severe asthma most of my life also means my friends and family have also lived with it too. They see how I try to manage my condition day to day, witness asthma attacks, call 999 for me when I don’t have the puff to call them myself, watch as helpless onlookers while an ambulance, with lights flashing and siren going, takes me to hospital as quickly as possible to stabilise the attack and make my breathing easier and then finally visiting me either in hospital or once I am discharged home. They see all this as well as my determination to manage my asthma desperately trying to ensure it does not take over and dictate my life. Despite witnessing all the above they accepted that this is what my asthma is like and that is that. An assumption was made that my asthma is as bad as it would get and my breathing wouldn’t get any worse than they have all witnessed. They thought this because I am under the care of a specialist asthma team who I can phone for advice whenever I am struggling which in my family and friend’s eyes means my asthma cannot get so bad that I may have a near fatal asthma attack.

My brother commented that he had become used to my asthma and almost complacent about how bad it could be. He said he has heard me speak recently of others who have died from asthma or friends who have been in a very serious condition but because I now have such a specialist team then I would be ok. It was everyday life me having severe asthma with the potential for requiring hospitalisation. He had taken this as normal and accepted it. So events earlier in the month were a huge shock and wake up call for the whole family because they had assumed I was safe with my asthma because I have some of the best people in the country looking after me and my asthma.

I look back now and see how my family normalised me being in hospital and me going to ICU so often which is really shocking. Going to hospital often should not occur let alone going to HDU or ICU that often. In any other health situation or if this was one of my siblings then it would not be just run of the mill and would be a life-altering event for the entire family.

My best friend who has known me my entire life and has been through thick and thin with me, seen me have asthma attacks and visited me in hospital never thought asthma could get as serious as it did during my last admission because I was under the care of specialists. She could not understand how asthma could get so bad when you are taking the latest medication that is available and have access to a team of specialists. She said she had never seen me look so unwell and vulnerable, not being able to do anything for myself reliant on others for everything.

The new report about severe and difficult asthma, which has launched by Asthma UK, makes me feel so fortunate to have such a good team and access to specialist asthma services to manage my asthma. Even with everything I have available my friends and family don’t fully understand how severe and life threatening asthma can be. I am sure if I did not have access to the specialists then asthma would have killed me. Everyone who may have severe asthma or difficult to control asthma needs to have access to specialists to help them live the lives they deserve to.