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.

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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

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What do you do on days when there is no air??

Today has been one of those days where it feels like there is no air. You are left gasping for breath just moving a few meters and even sitting still feels like you are trying to breathe through a pillow. It is horrible and unrelenting. Not only is there no air and very humid the pollen count is through the roof, pollution is high- just about everything thrown in that an asthmatic does not want to see in the weather report.

I feel like I have clock watched all day willing the hours to go by until it is night and there might be some relief as the sun goes down.

But what do you do on days like this?? What can you do to take your mind off the effort that breathing brings when even eating and drinking is an effort.

Today I have just made sure I have everything within my reach, nebulisers, tv remote, phone, water. Trying to limit the activity and not making any movements that can be avoided. It is tough as you always think you have everything to hadn’t and then you don’t.

I have been lucky today that I can watch the lacrosse European Championships as it is being streamed live which has passed the time very well. I have found I have been dozing on and off too. I am still so grateful that I have my electric bed so I can prop myself up, and relax easing my chest sightly. I am also super fortunate to have a Dyson Cool Air Fan with filter which has been life saving today and on previous warm days. I have had it on pretty much permanently when I am in as it does offer a lot of relief and is not just blowing warm air around. It is actually cold air it blows out!!

When the weather is this hot and muggy I find eating a huge difficulty. I have no appetite and anything substantial that I do eat I find myself feeling like I am choking as I just can’t breathe properly. This is not isolated to when the weather is like it is but also when I am unwell with a chest infection or in hospital post acute exacerbation. I have found my solution to this though!!!

Strawberry Yazoo is my go to drink. Whenever I am not great this is what I like to have. It has all the pick me ups you need but also does provide you with some nutritional benefits too- although you should not use them as a meal replacement I do find that when my breathing is bad these are the best things. I also always have a fridge and freezer full of fruit pre cut or ave berries etc so I have eat them easily and they are not too bulky, the freezer always also has ice pops, ice cream, ice lollies because you just need them to cool down but also nebulising a lot dries my mouth out and makes everything feel funny so the coldness is really nice on my mouth too.

A lot of people have been messaging me today with their tips and tricks for the hot weather. These include:

  • Bowl of ice in front of a fan
  • cold showers or bath
  • driving in the car with the air con on
  • a cold towel on the back of your neck

Others have also suggested going to hospital but I just think that would be as bad except they could give me IV mediation to make my lungs happier but it will still be airless and really hot in the wards- in fact probably even hotter than it is in my flat and then you add in lying on a plastic mattress. I think I will stay put unless things do get very difficult and I am getting close to my limit of what I am allowed to do at home. One friend did say hospital wouldn’t be that bad because ICU has air con!!! I would hope that I would not need ICU (even if air con seems like a nice idea)!

Any other ideas people have for staying cool and making the lungs feel a bit happier please share!!

Getting over the stigma of wearing a mask in public!

It has been a busy few weeks with a number of trips down to London. Last year when I had a few trips to London there was a clear deterioration in my asthma when I was there. My peak flow dropped substantially and I was constantly feeling tight, wheezy and just couldn’t get my breath or settle my breathing. I took all the precautions I thought I could- such as increasing my treatment, pre medicating before going out and about in a bid to stop my airways getting more irritated. It was interesting to see the drop by almost 150 l/min in peak flow between arriving in London at night and the next morning it was down. It really did not take long at all. What did take a long time was getting my peak flow to come back up. It was not until I had been back home for about 5 or 6 days that my peak flow returned to normal. (The trip I am talking about to London was ironically a research meeting to discuss air pollution on lung health!)

Knowing I had and will have many more trips to London I knew I couldn’t expose my lungs to that level of irritation again and couldn’t afford to let my peak flow drop and need more medication to get back on track again. If I did not do anything then I would be on this rollercoaster every time I was in London or other heavily polluted cities and my lungs really don’t need it.

After some research I decided to purchase a Cambridge mask with a carbon filter in it to protect my lungs from the air pollution when in London or else where.

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I need to point out here that there is a lot of people out there wearing masks such as this or the vogmask which also has a filter in it but it is VERY important to realise that these masks will not protect you from bacteria or viruses. Often there are posts on social media of people wearing these masks in hospital to protect them due to suppressed immune system. They don’t work for that and the companies state that too. Only high grade surgical masks will protect from bacteria or viruses.

I was really apprehensive about wearing it and thought I would get funny looks, pointed at and comments made, but one fo the people I was with in London told me to put it on and my breathing was more important than what other people think. So I wore it and got on with it. I really was not sure how much it would help, if it would help at all or was it just a waste of money.

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Since purchasing the mask and wearing the mask when out and about in London I can say it has been worth spending the money. I was very skeptical and part of me still is as both London trips recently were very close together so I am not sure how much might be just that my asthma was not too bad. Once arriving in London the next morning my peak flow dropped by 50 l/min but it also stayed stable throughout my time there rather than moving around the place. I had some low grade breathlessness, coughing and chest tightness but nothing massively concerning that gave me too much cause for concern. Once back home my peak flow did pick up a little bit but I cant directly attribute the initial drop to London but I think what I can say is that wearing the mask with the filter did impact my lungs and kept my lungs stable. I have had 2 trips now with the mask and things have been more stable as a result.

I am still trying to understand just how much the pollution impacts my lungs but clearly it is as when wearing the mask there is a marked change from pre mask and a change for the better. Unfortunately I will not be able to avoid going to London as there are so many things down there with regards to research etc but using the cambridge mask has made a difference and has added a little bit more security for y lungs and reduce the risk of exacerbation as a result of pollution. I am not sure how much the pollution in Edinburgh effects my lungs but it might be something to consider and perhaps wearing a mask in Edinburgh night help too.

I cant reiterate enough though that these masks are not hospital grade and will not protect against all viruses and bacteria etc. It is a carbon filter. The website does say it filters bacteria etc but speaking with medical professionals and different lung charities they do not support their use for bacteria and viruses protection.

Trauma of ICU

Finally I am able to sit down without getting upset or terrifying myself about my latest hospital admission specifically experience in ICU. The photo below may not look like much and you may think its a window and building but this is what has caused me to much trauma.

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Before anyone reads on please note this is just my feelings from it and my experience. The staff: nurses, support workers, physios and Dr’s were all fantastic and could not do anymore to help me.

This admission has rocked me so much. A lot more than any other has and I hope that I won’t ever get like this again.

There was a series of events I think which led to it all becoming too much once I got back to the ward and I guess basically I just broke down with fear that my asthma will kill me.

The lead up to being admitted was really rapid, as I said in my previous post where I spoke about the admission and how it went broadly speaking. What I didnt speak about was the true mental toll it took on me.

As with any trip to ICU in the back of your mind you know its not good because ICU is the end of the road in terms of hospital care you cant get any more treatment beyond what they an offer. I have been to ICU so many times, I cant even count the number of times I have been admitted there and come out the other end.

Once up in ICU there was the usual battle of trying to get a arterial line in which again failed and we decided to stop short of a cut down thank goodness as this caused me to lose the feeling in my left thumb and part of palm. High flow oxygen running various IV infusions and I had this feeling of being safe. I was in ICU and would be ok. Next came review from the consultant who said if things did settle next step is being intubated and ventilated.  I have had the said to me several times so I didnt think much more about it.

It was not until I came back to the respiratory ward that mentally I really found it tough. After starting to feel much better and access being an issue I was keen to be weaned off some of the infusions I was on. This didnt go to plan and a few hours after I really didnt feel to great so I let them know. Junior drs came to review and were concerned. It was late on in the day and about 7pm my own consultant came round to review me- that in itself freaked me as he was not even on the ward team but he came through. He wanted everything put back to the previous doses, have a whole load of nebulisers and be moved to the high care bay for close observations.

It was the move to the high care bay that brought so much flooding back and I felt that I just couldn’t cope at all. I have been in the high care bay before and never had any issues. I already felt quite on edge because by this point I had been seen by 2 consultants out of hours who came to listen to my chest and see how I was, have all my medications increased again and being moved. The move was what was enough to tip me over the edge. Once moved and settled I looked up and out the window and could see the ICU. The photo from above is below and I have marked where the ICU is.

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The combination of what the consultant said in ICU, and then getting worse on the ward and having consultants review me when they would not normally see you come in to review you and then seeing ICU again and the Dr’s talking about taking you back there was just too much. I think it was also because on the ward I was on the maximum treatment for my chest and just not getting better. The consultant was worried because I had been given 36mg of salbutamol via nebulisers with little effect. Thankfully they kept persevering and my airways did slowly start to open and breathing became easier.

Its fine when you are acutely unwell and everyone is buzzing around you making sure your ok, listening to your chest, giving you nebulisers, doing your observations you dont get much time to think or worry about not being able to breathe. Its once your that bit better and left alone and normally left with the parting words- “rest and try to get some sleep” and the lights go out. That is when it hits you. Still feeling not great and still finding breathing a real challenge sleep is the last thing you are able to do. Its a very strange feeling when you are so exhausted you want to sleep but scared to sleep at the same time. Being in the dark makes everything much worse and I just got so scared. I couldn’t help but break down. I was able to speak to a nurse but they could not offer much as its not like there is a magic pill that makes fear go away and because of my chest not being great they cant give you anything to help you sleep. At night with less staff around at night they don’t have the time to stop and speak to you and make sure your ok. but at that time it was all I wanted. They did then send a nurse practitioner up who was great but even he said that the psychological support at night was awful and as nurses we are not good at dealing with things unless numbers tell us something.

Over the course of that night as my chest came and went some nurses kept coming and saying to me all my numbers were looking better so I am doing ok. I think this is one of the statements I hate more than anything. I don’t care that my numbers may be ok or better I still feel like crap and having good numbers does not help with the crippling fear I am experiencing.

Once morning finally came around I felt really stupid for getting so upset but was able to have a chat with the Dr about it. I knew it was a vicious cycle of being upset, makes my breathing worse, which makes me more upset as I get scared it means going back to ICU but it is so hard to get out of that cycle.

The fear of what happened is still plaguing me. More so than normal. I can rationalise going to ICU and the need for their help but this time is just different and I cant get it all out my head.

I am a week out of hospital now and really feel like I am no further forward than I was day 1 post discharge. Everything feels just as hard. I have no idea why. Part of me wonders is it because of the biologic therapy that is making it harder to recover or has this all taken a much larger toll on me than I expected.

I have clinic next week and I hope to go through everything with my consultant and make sense of it all. I also hope he will have a reason for me feeling so rubbish despite being home from hospital.

I think this whole thing has just highlighted that no matter how many asthma attacks you have, or how many hospital admissions you never know when you will hit breaking point or when you just cant keep fighting.

Snow week: lessons learnt

This past week the UK has been hit with some awful weather. In the whole scheme of things around the world the weather was not too bad compared to the likes of Canada but the snow fall was enough to bring the transport system to its knees, shops ran out of food, no milk could be found anywhere. The entire country was suffering. Mainly the suffering came because as a country we are ill equipped to deal with any snow other than a light dusting.

Schools were shut, offices were shut as well, public transport couldn’t run. If you had any vehicle other than a 4×4 you would struggle to make even the shortest of journeys. The news bulletins spoke about the red warning where only essential travel should be done and if possible everyone should stay at home. This is all very well if you have an office job, or work in a shop. When you work in an essential service like the police, fire service, ambulance service or in the hospital there is no snow day for you. Health doesn’t get better or standstill and wait for the weather to get better so people can get into work and get their job done.

As I work as a nurse we don’t automatically get to stay home because the hospital never shuts, healthcare continues. I was fortunate that I have a 4×4 so I could move around the city with relative ease however I heard fo colleagues taking 3 hours to get to work as they had to walk the 8km to get in while dealing with blizzard conditions. I could only commend those who put such effort in. I could do my bit and take the night shift from the renal ward home and pick up some people who were stranded on their way to the hospital. It was a great sense of team work and really what the NHS is about. As I walked through the ward there were Dr’s taking beds helping with washes, consultants taking bloods and everyone just mucking in to help. Some nurses were staying in the hospital over night to ensure they could work the next day. I have utmost respect for those who did that.

For me my role in the snow was returning to a role I loved. In our department we have a certain number of patients we have to see everyday and set their dialysis machines up at home. Since my breathing has got worse I have been hospital based and not been able to visit patients at home but for 2 days last week we had to use my car to get to patients as the pool cars which are Vauxhall Corsa’s didnt stand a chance in the snow, so for me to drive and allow the nurses to get the machines set up was a no brainer. I was able to pop in and say Hi to some of the patients who I haven’t seen in ages which was really nice.

I have mixed feelings now about the snow melting. When it was really snowy my asthma was a little better as the air felt so much clearer and fresh. That damp feeling had gone but as the weather improves the damp feeling has returned and breathing is not as great.  I m also glad that the snow is melting because I was having to do a lot more hours than I had previously been doing. I was essentially working 8-4/5 rather than 9-3:15. At the time I didnt feel like it was  a struggle however this weekend has been a right off. I have felt exhausted. My chest has been bothering me. I haven’t been able to sleep because of my chest and I really do think it is a mix of doing a lot more at work and the change in weather. I need to remember this feeling and ensure I don’t forget why I am only working shorter hours than I had previously. Part of me always wondered if I would be able to work longer hours but this has confirmed that I really cant. I wouldn’t change what I did at all but it is something to take note of.

Leaving from work on Friday late afternoon nearly caused me a huge problem and I was so thankful that I have a portable nebuliser which I could use. I do go on about smoking and the effects of people smoking has on my chest but the snow days have been even worse and made it very dangerous for me essentially leaving me questioning why I continue to try and keep working when just getting into or leaving work can pose such a risk (but that is for another post).

Fingers crossed this week everything will return to normal, public transport will be back up and running and the snow will melt away without causing huge floods around the city and country.

Taking time helps to heal

The first week of annual leave I really felt a little bit of a mess and just didnt know what to do with myself and everything seemed really negative and falling apart around me, but a week in and half way through my annual leave I feel things are starting to get back together and I feel much better for it.

I have had time this week to sit, think and evaluate what it important, what I should prioritise and what I shouldn’t but also to look at what is important to me both in terms of what I like and want to do but also in terms of what is going to keep me healthy and well.

I didnt go to the World Cup to volunteer and to say I was down in the dumps about it would be an under statement. I didnt think I would feel as down about it as I did. It shocked me just how much it effected me but its been for the good. I have been able to watch all the games live over a web stream which if i sit back and think about it I wouldn’t have got to watch all the games if I was there volunteering as would be working and doing stats rather than watching the lacrosse for sheer enjoyment and trying to work out plays and watch how decisions are made and coaches change their tactics according to how games are progressing has been great fun so there are positives of not being there.

I also got a lovely message from the Scotland team today as well thanking me for what I have done which brought a wee tear to my eye. That team are a really special one and each member I really value and glad to be part of their prep to the World Cup so I hope each and everyone of them is enjoying the experience.

This next week I am going to London on Sunday and doing a talk along with some other bits and pieces then coming back home again.

I will be able to spend the rest of my time up north at the cottage for a few days working on various bits of research I am doing and have a new role as part of a patient advisory group for the European Lung Foundation too which is exciting. I am already a patient advisor for a study they are leading but really looking forward to something different with this role.

I thought the 2 weeks were really going to drag as I wasn’t doing what I had planned a while ago and I sort of put it to the back of my mind my annual leave as I knew thinking about it would also bring about thoughts of what I should have been doing but wasn’t able to but I have had so much support from friends that the week flew by and I am sure the next one will to and I will be moaning about wanting to be back on annual leave rather than working!

I need to do some resting as chest wise its been a wee struggle this last week more so than has been for a while but I think thats because the weather has been quite muggy and humid never an asthmatics friend! So hopefully the rain that is pelting down just now will clear the air to make for happy lungs and happy breathing!!!!