Corona Virus what does it mean for severe asthma?

Corona virus, COVID-19 or as I like to refer to it as “the virus” is the hot topic just now and rightly so especially as the World Health Organisation has just declared it to be a pandemic.

I have not posted anything on facebook, instagram, twitter or my blog about the virus because everywhere is saturated and there is a lot of different information about what to do and what is best. The only thing that is consistent is that hand washing is essential and that for the hand washing to be effective it must be 20 seconds minimum. There has been some fantastic stuff developed around songs that you can sing while washing your hands. This is a favourite: Bohemian Rhapsody (it is only half a routine so DO NOT use this to wash your hands)

stream_img

What does the virus mean for someone like me?

It is a very serious situation. The effect for me could be devastating. A basic chest infection is horrific and puts me in intensive care and that is a condition that has a treatment. This is a new virus that has no vaccine and no treatment. Should you get the virus the medics can support you and support the area of your body that is failing but otherwise you just have to fight it yourself. When you already fight each day to try and stay well this is an added extra that your body really does not need.

There are mixed messages going about for people with respiratory conditions. The issue with asthma is that it is so varied. For someone with mild controlled asthma the virus might not be that big an issue but I am immunocompromised due to long term oral steroids at fairly high doses and I pick up everything.

To be honest I am terrified. The last hospital admission was really hard and the recovery has been super hard. I have had to invest so much time and energy to get myself back on my feet and the thought of potentially having to do this again put the fear in me let alone to do that recovery plus having COVID-19 on top of it.

What steps am I taking to try and keep myself well?

I am just trying to be sensible but have taken a range of measures to try and protect myself apart from hand washing etc.

  • Withdrawn from speaking events including EyeforPharma in Barcelona, Asthma UK Centre for Applied Research Annual Scientific Meeting and various others. Both of which I am gutted about as was really looking forward to them.
  • Withdrawn from giving a lecture to nursing students at Edin Uni on Professionalism
  • Stopping coaching lacrosse in school
  • Have not been accepting invitation to attend events that are hospital based and any events that has been scheduled I have asked to call in remotely if possible especially if there is a large number of people attending
  • I have done all my shopping and meal prep so I don’t need to go to any supermarkets. i won’t have fresh fruit and veg but I have frozen fruit and veg so won’t miss out totally.
  • Finally the biggest one for me is that I am taking myself out of the city for a few weeks or for as long as needed. I am heading up north to my parents place which is in a small village away from any cities and in the countryside. This will minimise my contact with people and hopefully minimise my risk of catching the virus. I am concerned about getting ill when up north but it is safer to be away than staying in the city.

Its tough to know what to do for the best. With advice changing on a daily if not hourly basis everyone is in a state of flux constantly. We seem to have gone from panic buying toilet roll to panic buying everything that you would keep in a store cupboard.

One other thing I have been very conscious of and I have not mentioned is being in touch with your care team. I am taking the advice primarily from my respiratory consultant but then also my asthma nurse and GP as well. I need to consider what they suggest and listen to what they say over the next coming months more so than ever.

For anyone else who is in a situation with their health like I am I know it is a really difficult time. I am fortunate that I don’t have work to juggle as well as that would just be a whole new ball game. I think if I did still have a job I would be speaking to my managers and explaining my situation. On the whole from others who I have spoken to who have health conditions and work their bosses have been pretty accommodating and supportive. Oddly the thing I have been hearing most is that they wish their bosses or workmates would stop going on about how they have to be careful and or how they need to be aware of the news etc because of their situations and being immunocompromised etc. Many know they are just doing it because they care but even Ia have been getting irritated with people telling me to watch out and I don’t work just now and don’t see a huge number of people right now!!

For now we just need to keep up to date with the NHS advice and hope that things do not escalate.

I will continue to prepare for the worst and hope for the best as much as you can with an unknown situation.

Being a Health Advocate

and how does it differ around the world??

Last April I was in Dallas Texas attending the HealthEvoices (HeV) meeting. A meeting for health advocates to meet and learn from each other. I went out there thinking I knew what health advocacy was but I was wrong to some extent.

A while back I put the question out on social media “What does health advocacy mean to you?” and I got some very interesting answers. What I found most intriguing was that there was a clear split between thoughts in the UK and then thoughts over in the US and Canada.

Pre HeV my understanding of health advocacy was essentially speaking up for yourself or family member to ensure you can get the best treatment, or best healthcare you can for your condition to ensure you can live as independently as possible and without too much interference from your health condition.

I also thought advocating for myself meant me speaking up to my healthcare providers wether it be my asthma consultant, asthma nurse, GP or whoever and tell them the parts of my treatment I did like, the parts I didnt like and also the things that were important to me in my life. I have spoken before about a period in my life when I didnt like the treatments I was on because of the side effects and the amount it intruded in my life so instead of speaking up and saying this I just stopped taking the medication and didnt say anything until I got really unwell. I thought I was wrong to tell my team that I didnt like the treatment they wanted me to be on because they were the drs after all!! It took for me to get really unwell to be able to tell the Drs why I ended up so unwell. They obviously asked me why I didnt tell them rather than just not taking the treatment, but I thought I didnt know as much and had to do as they said. From this point on I learnt that I could speak up for myself and say to the healthcare team that this was my views and opinions etc.

This is on the whole what those in the UK replied with when I asked about health advocacy.

In contrast others mainly (with some exceptions) from the US and Canada said that health advocacy was the sharing of ones own experiences and knowledge to help others and raise awareness for that condition. I think in the UK we would see this as raising health awareness.

Since attending HeV I have wanted to bring this contrasting view of advocacy to the UK and really advocate more for those with chronic health conditions and how you as someone with a chronic health condition can get the best information, and be able to live your life alongside your health condition and not put your life on hold because of it.

Are asthmatics who post on social media one reason why asthma is considered as “just asthma”?

How often do we read or hear that asthma is “just asthma” and an inhaler will fix it all. Everyone knows someone who has asthma but not everyone knows how bad asthma can be and that it kills people. 3 people die each day in the UK compared to the 10 across the United States. I am not saying that 10 is acceptable but compared to the UK it is far better. In fact the UK has the worst asthma death rate for a developed country.

The big question is why do we have such bad statistics?

We have the National Health Service, Asthma UK, 2 dedicated research centres- the Asthma UK Centre for Applied Research and the Asthma UK Centre in Allergic Mechanisms in Asthma which is providing asthmatics with cutting edge technologies and trying to get a better understanding of asthma, the different types of asthma and best ways to manage it. Despite having all this, asthma as a condition is horrendously underfunded when you compare the funding given to cancer or heart disease. Asthma is way more prevalent yet still not fully understood. To begin to understand asthma, and the different phenotypes (types) there needs to be a huge input of money much like there is for other conditions.

Why is money not being given to improve outcomes of those with asthma? 

I believe that we as asthmatics have a role to play in this specifically the role that we play on social media. Over the last decade social media has exploded. Everyone (although there are some exceptions) uses social media of some sorts wether it is Facebook, Twitter, Instagram or LinkedIn. It is used for both social and professional use and although there are some restrictions in place you can post pretty much anything and it can be available to most who are looking for it.

I use social media in a number of different ways. Through Facebook, Instagram and my blog I can share my advocacy work and awareness about the condition, how I deal with it both the negatives and the positives, and also new medications that are coming out as well. Twitter is an excellent vehicle for knowledge exchange specifically for research as you can share snap shots of what is happening and not need to search a website and read through screeds of stuff.

Olivia_Fulton_Logo_Primary

On Facebook one of my roles is that I moderate and administrate several support groups for those with asthma, severe asthma, difficult to control asthma etc. I feel very honoured that I have been asked to become a member of the admin team for these groups however it is tricky. Many of these groups can be accessible to anyone who wants and people can post what they want, equally they can post what they want on their own pages too. I believe this is where asthma or more specifically asthmatics get a bad reputation and unfortunately when someone reads something in one place then an entire groups can be tarnished with the same brush.

What am I actually talking about? I often get into trouble or arguments with people because they are not acting responsibly and not taking their condition seriously. This would be fine if they were keeping this to themselves but many are not, instead it is being shared on social media. For example:

“my breathing is really bad and having to use way more nebulisers than I should so need to go to hospital but I have stuff to do first”

This type of thing I come across on just about a daily basis and it makes my blood boil. We have a role wether we like it or not to take our asthma seriously and get help when we need it. Part of me feels that anyone on the outside seeing this would think why should be invest lots of money in asthma when those with asthma are not being sensible with it.

I firmly believe if you need to get help you need to get help, a shower, shopping, housework etc can wait. If you don’t wait you might not be there to do it in the future. No one likes going to hospital and many with severe asthma spend a lot of time going to hospital resulting in admissions and plans changing. It is not ideal but it is what it is.

I have had 2 friends die from asthma and know of many others through my work with Asthma UK and being involved in support groups that have also died. For some of them the reason they died most likely could have been avoided had they got help when they first started feeling unwell. I am sure if I was able to ask them they would say they wished they got help sooner as they might still be here now.

I use the examples of these 2 friends in response to comments people leave like above. This will often cause many to get angry with me but if you are unwell you need help there and then. People do not see this and expect sympathy and attention but if you do not act responsibly then you are not going to get sympathy. If you really want to live then you need to go and get help. There have been times when I have just wanted to pretend asthma is fine and I don’t need help because I have something on and don’t want to miss it but then I think of Dawn and it jolts me back to earth forcing me to get help.

Wether we like it or not we are ambassadors for the condition. The outward projection we give I think has a large part of why asthma is not taken seriously. I am blunt and will say to people that if they want their asthma to kill them then they are going about it the right way. It is very blunt but it is the reality.

I know for sure there will be people who read this and have posted irresponsibly  who will be angry. I do care that they will be angry but at the same time I don’t because what we post on social media can influence others with asthma who may be new to the condition and they don’t know any better and think what they read is ok to do. Remember asthma can kill anyone not just those with severe asthma so those new to the condition may see stuff and think because someone who has had asthma longer than they have must know best and it is ok but it is not. We must lead by example and if we are not going to then we must keep this private and to ourselves.

So how much is social media playing a role in the reputation that asthma has. I will continue to try and get people to understand why asthma must be taken seriously and that when you need help for your breathing you need help and should not go and have a shower etc first because you think this is the priority.

I am an ambassador for asthma as we all are. Asthma needs to be respected much like other chronic health conditions are and it is not acceptable to post irresponsibly on social media for others to see and be influenced by. We desperately need more funding to understand asthma better and if we can do our part to help achieve this we might get there quicker than we are now.

Rant over but bottom line is: social media can be toxic in how people view asthma because of what those with asthma post for the public to see.

RIP Dawn

248405_2175783153257_1886811_n