Pollution and its effect on my asthma

It is well known that pollution makes asthma worse. There has been a lot of information in the press about this and how there needs to be low emission zones in major cities to try and increase the air quality. Recently an inquest ruled that the death of a young girl from asthma was due to pollution exacerbating her asthma which resulted in an attack that killed her. It is scary to see just what pollution can do.

I can see the effects of pollution on my own asthma. Since getting my smart peak flow meter I have been able to track my peak flow for a prolonged period of time. Previously I have always done my peak flow but did not record it (mainly because I am lazy and printing off a peak flow chart on paper was a faff and when I did print it off it would get wet as I keep my peak flow etc in the bathroom with my medication so I just gave up) so having the result blue tooth to my phone has been great.

I have had to ability to print off the charts month at a time or even week at a time if I want. The most useful thing I have found by doing this is the ability to identify points where my peak flow may have dropped or increased and then refer to my diary and see if there was anything that may have caused the dip.

For example the picture below shows my peak flow. The 2 yellow arrows mark when I went to London which shows a significant drop in my peak flow which then increased again once I returned home to Edinburgh. This drop was despite wearing a carbon filter mask to try and protect myself as much as possible.

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I am not sure what else I can do to try and protect my lungs from the pollution in London other than not travel there. The mask I use is high grade, I take my medication, I also try to make sure the windows are shut and I am outside as little as possible so I am not breathing in too much toxic air.

Conversely to this I was recently up in Thurso- just about as far north in mainland Scotland that you can go (except Dunnet Head) where pollution levels are very low I noticed my peak flow actually increased. Perhaps a combination of being at the far north of Scotland, away from major roads, away from major cities with large amounts of traffic and being right on the coast with sea air (sea air has historically been promoted as good for the lungs- it might be an old wives tale).

The chart below is my peak flow and the yellow arrow is when I was up in Thurso.

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I think from this I can clearly see the impact of air quality on my lungs. Edinburgh is a real mixed city as there are some areas which have horrific levels of pollution and other areas that are not so bad. I am fortunate in that I live fairly near the coast and not right in the city centre but it is still fairly polluted where I am.

What steps can I take to improve my lung health and avoid pollution?

  1. I would love to move away to the country somewhere near Loch Tay as I love it up there and the clean air would really benefit me. There is little traffic and no big industrial sites near by. Unfortunately due to the nature of my asthma this would not be feasible as there is no major hospital near me so if I was to have an attack it would be a long wait/trip to get help and to a hpspital
  2. Try and ensure I wear my mask when I need to so I am breathing the best air I can. Despite having a complex about wearing my mask I need to protect my lungs at all costs and if this means wearing a mask then I must.
  3. Keep an eye on the pollution levels and act accordingly. If I know the pollution levels are rising I should perhaps increase my inhalers to counter act the symptoms I may get (I will check this with my team before acting on this).
  4. Get out and about as much as possible down to the coast to breath in good clean air and not stay stuck in the city all the time.

Essentially there is no easy way to avoid pollution but I can see the detrimental effect pollution has on my lungs via my peak flow results. It would be wrong of me to recognise this and not act on it. I must get a plan and put it in place to protect my lungs from more damage which breathing in toxic air might do.

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(Me on the left wearing my Cambridge mask while in London at the Asthma UK Centre for Applied Research Annual Scientific Meeting)

SMC approves Benralizumab (Fasenra)

Today was a big day for many Scottish people living with severe asthma. Many of us live day to day taking medications that do not fully help relieve our asthma symptoms and keep our asthma under control. It can be very frustrating and scary to live day to day not knowing how you will be.

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In the UK medication approval is not universal. England and Scotland have different groups which approve or reject medications which could become part of the NHS formulary making it available to patients.

England have NICE- the National Institute of Clinical Excellence. NICE approved Fasenra earlier this year meaning it was available to patients who fit the criteria for it. However in Scotland we had a longer wait meaning many with severe asthma have been able to see the positive effects this drug has had on people in England knowing that they are not guaranteed it because the Scottish Medicines Consortium (SMC) has to approve it. The last monoclonal antibody Reslizumab was approved by NICE but rejected by the SMC so many were waiting with baited breath today to see what the SMC would do.

It was a huge relief today when I got a phonemail from Asthma UK to say it has been approved. This means there is one more drug out there for those with severe asthma to try and hope that it will be their wonder drug. The weird thing with monoclonal antibody treatments (aka the mabs) is that they work for some and not for others. Just because you qualify for them through your IgE or eosinophil count does not mean that it will make a difference. This leaves many feeling lost and wondering if there will ever be a break for them from living with daily symptoms struggling to breath something no one should ever have to do.

The below is part of the press release from Asthma UK which I contributed to about the impact that severe asthma has had only life and what the approval by the SMC means:

“My severe asthma leaves me gasping for breath, exhausted and unable to even walk down the road. While I’ve had asthma all my life, it worsened as I got older. I had no choice but to take long-term oral steroids at a high dose which has left me with terrible side effects including osteoporosis. I used to be sporty and had my dream job as a nurse but my asthma got so bad I had to give it up. This new drug could transform my life allowing me to get back into work and regain my independence. It’s high time that severe asthma was taken seriously and that everyone who needs this kind of drug is able to get it.”

I was also interviewed for the radio which went out across Global Radio Networks this evening which was also focused on living with severe asthma, the effects medications to date have had on me and what Fasenra could mean for me and many others like me.

I am really proud to have been able to share my story but also that there is light at the end of the tunnel for others. It finally feels like severe asthma is being recognised. It seems that asthma only makes the headlines when a young person dies from an attack which is catastrophic but asthma should not be in the headlines for this, this should not even be occurring but it is. Despite this asthma is not being recognised. Hopefully there will be enough coverage about the approval of Fasenra in Scotland and how many people it may benefit from it that asthma may get taken more seriously and there will be more funding available to help those with severe asthma whose lives are being dictated by a condition that is so misunderstood despite their own and their medical teams best efforts to control it.

For me I had hoped mepolizumab would be my wonder drug. I still hope that it will be but I am not sure. I am still reliant on oral steroids and not able to reduce my maintenance dose, I have had to give up work, have also recently decided to step back from some of my lacrosse commitments all because of my asthma. My best efforts to control it are not enough but there are limited medications available to me that I have not tried which could help me. With each new drug that is approved there is that little bit more hope that one day my asthma will no longer dictate my life and just be a part of my life that does not cause me any problems.

Feeling much better and more positive!!

Its now the end of the week and since my last post things have been a lot better. I must say the support I have received over this week from others who also have chronic health issues has been over whelming. It was both reassuring and shocking to read comments from people saying they could have written what I did as it could have been them. This is awful that so many people are struggling with their conditions and feeling isolated but then also gave me reassurance to know I am not over reacting about the situation I find myself in but it is perfectly normal.

But this shouldn’t be perfectly normal when living with a chronic health condition. It has really rocked me reading all these comments. I thought maybe one or two people might have had a period of time feeling similar but not the sheer number. It has really made me want to do something to try and combat this but I am not sure how and I am not sure what to do.

The wanting to do something was reinforced today even more so when I met up with another severe asthmatic in Edinburgh. It was so easy to talk and even though we had only met through a support group it was easy to chat and there was a mutual understanding of how shit life can be with severe asthma and the restrictions it can put on your life.

Feeling a lot more positive about things now and know I am not alone and can ask for help. It is not a weakness to need help but a strength to recognise when you need to ask for help.

Tomorrow I have a busy day as it is the Leith Gala Day at Leith Links and the ICU Steps Edinburgh support group which I am part of have a stall at it to raise some money for the charity and raise some awareness about us and what we are there for. In-between doing that I am at the Sick Kids for the launch of a children’s patient and public involvement group too and will speak briefly about my experience of being in a PPI group. After that a trip up to Thurso to see family to really clear the cobwebs and reset the clock ready to face the world again.

 

#MentalHealthAwarenessWeek2019 Acceptance

In my first post for #MentalHealthAwarenessWeek2019 I looked at dealing with being in denial. Wether that denial be of your physical health or your mental health, I am sure it is something we have all done. Tried to brush things off and say I’m fine. But what does saying fine really mean. To me now saying “fine” says a lot more that it means. To me when someone says they are fine it means they don’t know how to explain how they feel, or they don’t want to admit how they feel, or they don’t know how they feel. This happened just tonight speaking to a friend whose response to my how are you? was Im fine when clearly they were not.

I think we all just jump to I’m fine because we think it will not lead to anymore questions and we can move on to a different topic. Why do I think this? I used to be that person and still am sometimes. I would think if I said I was fine then I would be left alone to get on with things and could feel rubbish with out anybody pestering me. When I first started seeing a psychologist we spent a session talking about “Im fine” and why we use it. It was interesting to explore it further. It caused me a lot of pain as it brought up thoughts I didnt want to deal with, and made me realise my situation but now I look back and see I needed it otherwise I would still be telling people I am fine when I am falling apart.

Exploring the I’m fine became a lot more. It helped me accept my health. It helped me move out of a denial phase where I wanted to pretend to everyone I was ok. I didnt want to be the weak one who struggled to breathe or could work like everyone else. I didnt want a condition that can be considered by many as “just asthma” to rule my life and dictate it so if I didnt knowledge it to other people then everyone was happy as larry. All this did was hurt me more as no one else was getting more unwell or lonely because of my asthma and my health it was only me I was punishing.

Opening up and being able to explain how you feel is hard. I started off by trying to verbalise it but I found doing word clusters easier. I had 3 sheets of paper and each one contained a word: asthma, physically, and mentally. I also had coloured pens where I then wrote down how each word made me feel right there and then in one colour, in another colour I wrote down how i have felt in the past and then in a third colour I wrote down how I wanted to feel about the words.

This task made me accept my health both physically and mentally. It made me acknowledge that asthma is not just a physical condition but impacts you mentally as well. By treating each part in isolation I was never going to be able to really get to where I want to go. One each sheet of paper I had the same words particularly with where I wanted to be in the future. I had a common goal across everything and this is when I realised that to achieve that goal I need to look at every aspect of my health and how my condition is effecting me.

I found also that by doing this task I accept my health. I was able to see where I was and where I wanted to go. Rather than focusing on the here and now I was able to set goals for the future both short and long term. Goals which are achievable but also including some that are going to push me because you don’t want to make life too easy. Doing this meant I evaluated myself there and then, how I was feeling, what I needed to do to keep me stable or what I needed to do to change the situation I was in if it was a bad day. Accepting that you can have bad days is a big part of this but to accept bad days I found I need to have strategies on how to fix these bad days. It was not about looking for a fix such as a cure but looking at things that can still be done and achieved despite you not feeling well. For me a big part of not feeling well was feeling like I was failing. If I was not well enough to work or when i cut my hours cut down I found myself sitting at home thinking I should be at work just now but am not because of my lungs. Accepting that this is where I was at that point and doing something to change it even though I am not able to change my lungs I can change what my brain is doing. For me that is being involved in research. No matter how unwell I feel I will always be able to be involved in research.

One of the other big things about moving from denial to acceptance is evaluating yourself. You are going to have days where you slip back into the Im fine I don’t want to talk about things from time to time but if you can reflect back on why you felt like that. It might be that it was the people you were around you at the time and you did not want to share your feelings with them. This is ok. Everything has to be done in your own pace. Some people maybe able to reflect on themselves and feel they can shout from the rooftops about their condition and how it makes them feel where others cant tell a sole. Everyone is different and everyone has their own way of dealing with it.

I would be really interested to hear about how others found self acceptance of their health when they had previously been in denial about anything being wrong with them. I am always intrigued as to what skills others utilise to help them.

The above is just my experience. It might not be right for anyone else, but I found this is how I got my head around things and accepting how my asthma is impacting on life and how I felt about my asthma, the impact it has on my physical and mental health too.

One thing I want to get across this week is that a physical health condition is not isolated to just the physical body, and a mental health condition is not just associated with your mental state. They all over lap with each other and to truly get the best management for you everything needs to be looked at not just the condition in isolation.

Welcome Ghillie

I can’t believe I have not posted about Ghillie. For the longest time I have wanted to get a dog. I had cocker spaniels as a kid and my grandparents always had dogs and rescue dogs. While working I always thought I would never be able to have a dog as it would just not be fair and I was not one for wanting to either leave the dog at home and someone else walk them or leave them in the car or crate etc. I have read a lot and met a few people who have service dogs and spoken about the various different things they can do. My consultant had also mentioned them as well and he supported me which is great.

Now that I am not working in the hospital and mainly doing research and public speaking plus some writing it seemed like the perfect time to investigate further and see how the best way to get a dog which would then be trained to be a service dog. I feel very strongly that everyone likes to train their dog in their own way. Some charities you get matched with a dog who is pre-trained which is great but I want to have that bond so opted to get a puppy myself, train it and go through the kennel club obedience tests before going on to start working towards assistance training.

A lot of research went into choosing the right breed and breeder. Having had cocker spaniels when I was younger I knew I would be fine with them as they never caused me any issue. I have been lucky with dogs as one the whole I am good with them except the ones that malt all the time. So I thought about a cocker and found some breeders but doing my research I learnt that the nose on a poodle is far more sensitive than of a cocker so it was recommended for my need that a cockapoo would be the best cross breed as it would have the nose  and scent attributes of a poodle but then also the work and gun dog ethic of a cocker.

I sourced a breeder, did some background, went out to see the breeder armed with questions and was surprised when he too was armed with questions for me. I guess because he wants to make sure the puppy goes to the right place. As soon as I met the breeder I knew it was a good fit and he was the right one. I just hoped he thought the same about me! Thankfully he did.

When it came to choosing the pup I stood in the area and let the puppy come to me. This wee guy was the one that came to me so I decided to go with him. Next came the name. He ended up being called Ghillie after a text message was miss read. I had a few others but Ghillie just sort of stuck. I like it and also there is a link to the breeder as he is a ghillie!

This is him at 2 weeks old.

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At weeks old he got to come home with me to start his new life with me. I feel a little bit like a crazy dog lady as keep posting photos but at a time in my life where things have not been that great he has been the much needed distraction and companion. It has been less than 2 weeks but he has had such a big impact already and not just for me but also my mum and youngest brother too as well as nephew and sister in law.

The day I picked him up to bring him home.

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The first week has been busy and hard work but it will pay off in the long run. I have discovered how clever he is. We are doing a lot of house training. Not many hiccups although we have had a few times when it is like he has forgotten everything he has been taught but I think it is more because he gets distracted and hyper excited about anything and everything.

Having Ghillie at home is like a breath of fresh air. He is so dependent on me for everything that it gives me a real purpose and not waste away my days. I cant wait for him to be able to go outside so he can explore the world, see the beach and go up north. He is a little monkey as well and knows when he has been caught doing something he shouldn’t he gives me those puppy dog eyes that butter wouldn’t melt.

Below are a few more photos of him. So many people were asking for photos and asking about how he will become a service dog, I have created an instagram account called @ghillieservicepup where you can see photos but I will also post about his training and becoming my service dog as well as my companion.

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Parking is not the only issue at the RIE

In the press today and on social media there is a lot of energy being focused on the Royal Infirmary in Edinburgh and its issue with parking. Ever since I have worked at the RIE there has always been an issue with parking. There has never been enough parking for the number of staff let alone patients or visitors.

This summer the new Sick Kids hospital is moving out to the RIE site as well as DCN. Now the new departments have been built on one of the previous car parks and there has been no replacement car parks being put in place.

There is up roar about this especially as staff have to pay to park. You can apply for a permit which costs £25 a month but these are now in short supply and to qualify for a permit you need to meet certain criteria. I remember when I was applying for my permit first off having a blue disabled parking badge did not move me up the line I still had to wait. I did eventually get a permit and was able to get a permit for a car park close to the hospital because of my blue badge but this to me is almost a waste of time because the welfare of the people working there is not addressed or prioritised.

For me and many others one of the biggest issues at the Royal Infirmary in Edinburgh is the smoking issue. There was a supposed smoking ban on NHS Lothian sites but what it seems to have done is nothing more than encourage people to smoke right outside the hospital doors. I remember just after the smoking ban came in I was working a night shift and halfway through hand over I had to get taken to A&E due to an asthma attack as a direct result of making my way into the hospital from my car. Sadly this was not the only occasion this occurred. There have been at least 6 occurrences where me getting from my car in the car park to the front door have resulted in me being exposed to people smoking where they should not be and ending up requiring hospital treatment and sometimes needing to go to intensive care.

Just now I am on a career break focusing on research but I am very concerned about going back to work next year. I will need to reapply for my permit but also if I don’t have a permit I will need to either pay for parking which is not always guaranteed, or risk getting public transport which could put my life at risk. I worry that will my hard work this year to get my health better be then set backwards by the risks that are involved in just getting into the hospital.

I have tried to speak to anyone who will listen about the smoking issue which is particularly bad at the Royal Infirmary but it seems to fall on deaf ears. The really shocking thing is that an area which is probably the worst for the number of people smoking is right below the respiratory ward and not even that is doing anything to get the smokers moved. I am not against people smoking- it is their choice if they want to end up giving themselves COPD and a self inflicted breathing condition but I am against them inflicting others to their bad habit. I didnt do anything to cause my lungs to get like this they are just like that so I do not expect to have them deteriorate as a direct consequence of someone breaking the law and smoking where they should not be working.

The most shocking bit about it is that the Royal Infirmary in Edinburgh are happy to patrol the car parks and put tickets on cars which are parked in the wrong place but turn a blind eye to people smoking. I tell you a car parked in the wrong place does a lot less harm than people smoking.

When it comes to April 2020 I will need to think about wether it is worth the risk  to come back to work if the smoking issue is not addressed.

It is a sorry state of affairs when healthcare workers are questioning wether they continue in the career or where they are working because there is not adequate provision to support them.

 

My HealtheVoices19 experience!

Last night I was catching up on reading some blogs and came across one that was written by one of the other people who attended HealtheVoices (HeV) who opened her blog post with my exact thoughts. She had been drafting and redrafting posts about her experiences of HealtheVoices and not knowing quite how to write it. She came down to the point of just getting it out and putting it down in a post. So this is what I am going to do as well because like her I have been going over how to write my experience and then rewriting it and never being happy or knowing quite how to word it.

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So here goes…

Leaving the UK to go to Dallas was a mix of nerves and excitement. The lead up to the HeV event was so positive and the support from everyone was there right from the start so I was feeling at ease but also felt a little is this really going to be like this once I am there too. A small hiccup at the airport but I was soon at the hotel and getting ready to settle in.

There was no real plans for the Thursday night. There was dinner but it was a buffet and you could just go down and eat when you wanted. I am never very good at these things and went downstairs several times with the intention of going in to the dinner room but I kept bottling it so would head back up to my room. I was too nervous, and tired because I was still on UK time and had been up for about 24 hours at this point, but I needed to get over jet lag so I could enjoy the conference without crashing, so I forced myself to go in and join a table. I am so glad I did go down. The slight awkwardness of plating my food and all the time thinking which table should I ask to sit at, who won’t mind if I join them, there was 101 things flying through my head but actually some of those who I had my first meal with in Dallas are also the ones I had my last lunch with as well. I did have that bit of security with me at dinner though- I had my name badge/lable/neck thing so anyone I met knew my name, knew I was speaking but also knew that it was my first time attending the conference.

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When I have attended conferences in the past I have felt at ease, and with each conference I attend and speak at I feel more confident but this was different. When I have spoken at conferences I have been there and what I am speaking about is my specialist interest and my experience, I tended to be the patient giving my opinion of essentially being an expert patient. This was a different ball game. Everyone there was like me, we are all experts at living with our own conditions and doing our own thing to raise the profile and difficulties we face trying to live a functional life.

I have never really thought of the work I do with asthma as advocacy, I actually didn’t like the word advocacy but attending HeV I came away feeling that maybe it was and I was an asthma advocate. People often ask me what drives me to do what I do, how do I come up with content, ideas etc. I never really know how to answer because I have never thought about why I do these things. I just do it because I hope that by sharing my story maybe people or even just one person might be able to take something from it and their experience will be a bit easier.

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It sounds cliche but after my initial nerves everyone was so welcoming at the meeting. Wether you were a first timer or had been at all the HeV meetings in the past everyone was on the same level- we were all there for one reason. Everyone there is motivated to help make a change. There was a variety of people who have had a condition all their life, then some with conditions that vary, go into remission or are cured from it but through their experience they are sharing knowledge gained, experiences which were good or bad.

I still really am struggling to put into words all my emotions from the meeting but I think the photos speak for themselves.

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So where do I go from here??

I have a few projects that I would like to pursue the most pressing one is to try and get rid of all the stock images media outlets are using which are subconsciously promoting poor inhaler technique. Almost every day I see a photo being used on a media article which shows a child or adult using a MDI (metered dose inhaler) with no spacer and even though there is no spacer the technique is not good either. In the UK there is an inherent problem with asthma management and self management resulting in high death levels from asthma attacks which can be prevented. One of these preventions is correct inhaler technique.

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And a last disclaimer:

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