World Asthma Day

On Tuesday 1st May is was World Asthma Day. I normally do something during the day, or post a video etc raising awareness about asthma, how serious it is, how  critically under funded research into asthma is. This year however I didnt do anything I just wasn’t well enough, my chest was far from good and lacked any ability to concentrate and focus on anything, mainly due to the high doses of prednisilone which leave you with a mind that has been put in a blender and constantly mixing your thoughts up and also due to the lack of sleep again thanks to the prednisilone but also my breathing has been getting worse in the late afternoon, evening and into the night making sleep difficult.

But World Asthma Day 2018 was recognised by Asthma UK with a huge thunderclap on how to deal with asthma attacks which reached far and wide across social media. However there was some very disappointing news also announced which is devastating and really makes you think how, why and when will those in power do something about it.

What Im talking about is the UK’s statistic on asthma deaths.

World Asthma Day 2014 saw the publications of the National Review of Asthma Deaths (NRAD) which showed the devastating numbers of people dying from asthma but also that over 2/3 of those deaths would have been preventable had they received the correct asthma care including having an asthma action plan in place, having regular asthma reviews and also correct inhaler technique. The publication of NRAD was meant to be a turning point in asthma care given the shocking statistics. I remember at the time thinking it was bad and that so many people shouldn’t be dying from asthma so you can imagine my shock, upset, dismay when I woke up to hear that asthma statistics have not got any better in the last 4 years in-fact they have got worse. Asthma deaths are 20% worse than they were 4 years ago making asthma statistics in the UK as the 5th worst across Europe and only one of three countries whose death rate increased rather than decreased. It is really shocking but then I sit and think a bit more about it and am I really surprised? I don’t think I am. I didnt think the rate would have increased as much as it has but if Im honest as a patient I really don’t see any changes that have had a big impact on asthma management, and if there are no changes there then there won’t be much of a change in the statistics.

As a patient who has asthma and does use a variety of NHS services because of my asthma I have not noticed any changes in how asthma is managed and monitored. I know my asthma is not run of the mill asthma and is more complex therefore GP’s and asthma nurses in primary care do not have a lot of input into my care other than my annual asthma review which the asthma nurse does at the GP survey. However the review tends to be me updating them on the new research that is out and what new treatments are available. I am often told that I know my asthma better than anyone so they are going to let me self manage but will be there if I need them. I understand why they do this however as a life long asthmatic and a very difficult to control asthmatic I cannot remember the last time I had my inhaler technique reviewed. I don’t think I am doing it wrong as take my inhaler the same way I always have. I also don’t have a written asthma action plan. I have bugged my (now old) consultant for one because being on maximum doses of inhalers I don’t have room to move should I get a cold or chest infection. Now that I am going to have a different consultant who i hope to have a better relationship with and will work with me rather than against me or just not work with me at all leaving me to do most of my management and hoping for the best (mostly I think i do the right thing!). But this got me thinking, how many other asthmatics like me who are difficult to control are just left to do their own thing because the asthma nurses they see say the same as mine that they are far more knowledgable than they are.

One of the other problems I see often and I think is a potential barrier  to reducing the number of deaths due to asthma is those who have asthma give it the respect it deserves and be sensible with it. Due to the difficulty I have with my asthma and the isolation I feel as a result of it I am in several support groups for asthma, brittle asthma and difficult to control asthma. It is here where you can chat to people who know exactly how you feel, how debilitating it is and the frustration  you feel when you try to do everything right but still your asthma is not behaving.

These groups are a great source of support however there is one very concerning theme which keeps recurring which no doubt is also a factor for so many asthma deaths and this is not getting help early.

I will often see posts made by people saying they have been using whole inhalers in a couple of days, or they are struggling to talk and having an asthma attack and they don’t know what to do. In these groups we do not give any medical advice but would suggest the person concerned follows their asthma action plan to which some would reply saying they don’t have on, or that they go and get seen by a GP or hospital. Again some group members would respond saying the GP does nothing except give them steroids or send them to the hospital. There is also the situation at night when GP practices are closed so you need to phone NHS24 and they will assess if you need to be seen by a Dr. Many people again don’t see the point in going to out of hours because they don’t know you so wouldn’t be able to do much. It really frustrates me when this happens. I can understand that asthma is very tricky to deal with as there are so many different phenotypes so seeing your own GP is preferable but it won’t always happen that way and more than likely it is during the night when you start struggling to breathe.

Now for the last, most serious, and riskiest behaviour that also occurs in these groups which could quite easily cause death. What am I talking about is when people post photos of their oxygen saturations or heart rate accompanied by a comment about how much they are struggling and finding it difficult to talk and don’t know what to do. Again naturally you would offer support and see what they have already taken, followed their action plan and if all this has been done the next step is to go to A&E to be reviewed, have their chest sounded and some treatment if needed to get their chest and asthma back under control. The problem occurs when you have given them some advice and recommendations like they asked for however they don’t take it. Many say that going to A&E is a waste of time because they get told their oxygen saturations are ok and their chest is wheezy but they will be ok. They may be given some nebulisers and prednisilone and allowed home. They see this as a waste of time as some feel they can do everything they are being given in A&E. They don’t see the value of attending as they see it as just getting some medication but actually the Dr or nurses are assessing them to see how much effort they are putting into there breathing and if they are using their accessory muscles to help, they will also have bloods taken which can show if they have any infection and require antibiotics. So it might not seem that much is being done but there is a whole assessment taking place. Then there are another group of severe asthmatics who won’t go to A&E early as they feel they are always up at the hospital being admitted for their asthma or being seen in outpatient clinic so they want to maximise their time at home so will stay there until they are really struggling which is when it gets dangerous as an urgent ambulance is often required and the resus room is on standby for you so you get treated straight away and stabilised before moving to a ward. I don’t think people realise that by staying home longer they are taking a big gamble that they will okish by the time the ambulance arrives and takes  them to the hospital. The longer they leave it the longer and harder it is to get back to baseline and the more medication to help relax the constricted airways. This also means that they will require additional medications to treat the asthma and any infection present plus more medications for the side effects of prednisilone.

By delaying when you decide to go and get help because your asthma has got more difficult is critical because you don’t know how severe the attack may be and if your out with a bad chest you may be exposed to triggers and because your not well your airways are going to be more sensitive.

I guess the message I am trying to get across is that no matter how busy you are in life or how much you feel you spend off work and in the hospital nothing makes up for not having a life which is what will happen if you don’t go and get help early for your asthma.

Whats your reality??

The other day I picked up my medication from the pharmacy and laughed when the handed me over a shopping back but then went back for another one!!! I know all the people in my pharmacy well and will always have a chat with them but I have never really told them whats wrong with me. They know I have asthma but they don’t know much about it etc, until the other day when I hadn’t been in for a while. I collect my dosette box weekly from them and will get a top up of inhalers etc every so often. She asked where I had been so I told her I had been in hospital and thats hy hadn’t been in. She was shocked. She said she didnt realise just asthma could do that to someone. I went on to explain a bit more about it and how it impacts me and explained what all the meds I take are for. She said she ha wondered as didnt think asthma could be like that. She said it must be hard but its life. Life for everyone is hard at times but it is what you make out of it.

img_3116

I have days where I really resent having asthma and wish I could go back to primary school I think P3 was when I was on just one preventer and a reliever and that was it. That would be wonderful but then what would I have achieved in life if I didnt have the difficult asthma. I am sure I would be proud of my life but Im not sure I would have done nearly half of what I have done and a lot of it is because of my asthma such as publishing an article in the BMJ, playing for Scotland in the Home Internationals, be back as a goal keeper in lacrosse, speaking at so many events, speaking on a masters course at Edinburgh Uni, being a nurse, being development director for Lacrosse Scotland, being a PPI lead for AUKCAR, being a RaP volunteer at Asthma UK. None of these things I would have done and I also would not have met some fantastic people on my way and made some great friends. I am thankful for my asthma to have given me these oppeturnities inspire of also giving me some of the hardest times in my life and living with the fear that it could kill me one day. (but then as my mum says you could cross the road and get knocked down by a bus so you never know what is runs the corner!!!!

I would love for a day when my breathing is a little less challenging and a little less limiting but I think in a small way I am glad it has shaped me the way it has.

The reason I wrote this out was because I just picked up my meds as I wrote in the start and I organised them into my cupboard to make them all neat and so I know what is where. I was getting lost with the meds and what I was taking when. It was over whelming but my pharmacist has reduced that a lot by sorting my meds out weekly but they were also all in a box just chucked in so never knew what I had and what I was running out of. Now they are neat in a cupboard which I can close the door on. Closing the door- after some carful tetris packing because it wouldn’t shut the first time round, made me think about what we hide from the outside. What is our own reality and what is the reality that we allow people to see. My life on the outside is very different to life in my flat. I find when I am at home I am resting and doing treatment to allow myself to go out and about and be with friends or coach or something else. It is like two polar worlds- one which is in preparation of going out or the recovery of being out and then the being out and doing things. Its keep the private and the public separate until you read this and realise that asthma is not just asthma but it is much bigger. It is life changing, life threatening, life limiting.

 

But take each day as it comes and rise to the challenges that are thrown at you and achieve what you dream of achieving as it is always possible it just has to be achieved in different ways with some imagination sometimes. For instance I always wanted to play lacrosse for Scotland but never did I think it would be achieved by being in the goal, I thought if it was to happen it would be playing out field.

Good things come to those who wait.

Life is for living not watching it go by in front of you!

 

How do you get used to to living in a state of instability?

You don’t….

I like my life to be quite ordered. I like to know what I’m doing day to day, week to week. Many think I am stuck in my ways but I like routine. Routine gets me through, it means I know where I am. Recently I have found my asthma has been not to bad but the last month I would say it has been teetering on a knife edge. Never quite knowing when things are going to tip but desperately hanging on.

It is that very difficult period where your just sort of suffering. The nights are long and a little frightening as my asthma always gets worse at night. I finish work at four and have often been in bed by 6 using my nebulisers but just exhausted from getting myself through the day without getting sent home or worse ending up in A&E. Part of me wants to just hold my hands up and admit defeat but I can’t. I have to keep going.

If I am honest I feel alone just now. I sort of feel like I am on my own with this horrible condition even though I know Im not. I have lost a lot of my vital support networks which I didnt realise I heavily relied on even when my breathing is good. Matters out with my control have meant that to protect myself I cannot show true self or leave myself vulnerable to others, in doing this I am protecting myself but I am also isolating myself and I hate this. I loved being part of the support groups being able to help others and receive help and support myself too.

I really hate asthma just now and how little it is understood.

If only it could go away or a cure could be found soon. I try to be strong but today I can’t be. Today I want to hide in my flat and curl up in bed.

One of the other things I hope that by just not doing anything this weekend is that I still have a massive fear of going to A&E again. The fear of not being listened to is still fresh in my mind and that resulted in me going to intensive care because a nurse thought he new best, I was young and was not that bad. I hate to think what would have happened had I not had my own nebuliser with me and had I not know my own chest. I mean even with my own actions I couldn’t stop myself ending up in intensive care and this really terrifies me. I fear that I will end up being looked after by the same nurse again, it may be an irrational fear and the chances are slim but it is still there in my mind at was was already a scary time and it was just made worse. As a result there has been times when I may have had to go to hospital but did because I just stayed at home and would do back to back nebs- maybe more than I should have but the fear was paralysing and I can’t explain that fear to anyone.

I have to look at the positives though. I have had the most amazing summer doing things I never thought I would have. I made some awesome friends and played more lacrosse than I could have dreamt of so while I don’t feel great I can sit and look at the photos and memories of the summer and smile knowing that with hard work I will be able to do this again!!

Pharmaceutically Enhanced!

I read an article recently which challenged my thoughts on modern medicine and how I have become totally reliant on pharmaceutical products. I am so thankful for all the developments in medicine and where medication is now.

Everyday I take a concoction of medication and far too many for someone in their late twenties almost 30. I take a range of bronchodilators, inhaled corticosteroids, anti leukotriene receptors, oral steroids, antihistamines, xanthines, proton pump inhibitors, anti emetics, bone protection, painkillers, muscle relaxants, antidepressants and hormones. These all range from inhalers, nebulisers, nasal sprays, tablets, injections. This is just on a regular basis but add in emergency treatment of IM and IVs as well. I wonder what has happened to me since it was just 2 inhalers- a preventer and reliever. I never even knew about all these there medications and it has only been recently I have really understood what they all do, how they help me and what benefits I get from them.

IMG_2952

I am constantly working with my team to work out ways of reducing the numbers of medications and that I am only taking what I need to take and what actually does something. There are times when I just wonder why I take everything everyday when I can sometimes find I get no benefit at all, but on the good days I can really see how they help. I can go from gasping for breath to be able to breathe freely with the help of my medication regime and all the different things.

meds

As great as this all is I can’t help but think where would I be if we did not have these great advances in medication. If we were all still relying on asthma cigarettes, powders or the later developed atomiser and then pocket atomiser- something about the size of a portable nebuliser rather than a pocket inhaler. Im not sure I or many others would be able to do half of what I do without the medications we now have. Im pretty sure I would be in quite a bad way and stuck indoors all the time. It is a thought that doesn’t bare thinking about.

So many of us, myself included complain constantly about the amount of medication they take and the side effects. My list of medication is half medication for my asthma and half to treat the side effects of the medication I take for my asthma mainly the prednisilone. Reflecting now as much as I hate my medication I am hugely indebted to the researchers and pharmacy companies who develop these new medications for all different diseases. Selfishly I want them to focus on developing medication to help conditions like asthma which don’t get the funding as I desperately want to have the life I used to even though I am ever so grateful for the life I have now it would just be great to turn back time to the good old days!

I guess the article I read just highlighted to me how fortunate I am and we are that we are here in the modern world compared to time before.

For now just need to keep on….

Shaking, Rattling and Rolling!!!

A big thank you from myself and Karen

Myself and Karen (Captain at Craigmillar Park Golf Club) want to thank all those who participated, volunteered, donated prizes, and helped make the day such a great success. A huge amount of money was raised and it was way above our target but the money everyone donated and help raise will go towards ground breaking developments in asthma research to help produce new medications to help everyone with asthma. A thank you to Lisa who introduced our video and her son for his expert filming!

Everyone knows someone with asthma but not everyone knows that 3 people die every day from an asthma attack. Since the publication of the National Review of Asthma Deaths in 2014 there have been approximately 1600 deaths from asthma in the UK. This number is far to high. I owe a huge thanks to all those who have helped save my life when been admitted to hospital and ended up in intensive care or high dependancy but I have ad some friends who have not been so lucky and have lost their life to asthma. The public perspective of asthma needs to change as many think asthma is just about taking a blue inhaler but it is far more than that. I can control and dictate your life in ways you never think are possible. Even those who have mild asthma and will never think they are at risk of a life threatening asthma attack but they are, anyone with an asthma diagnosis could potentially be at risk from asthma.

Please watch our video below.

Dreams are perhaps coming true!

For the longest time I have been willing for the day when I really feel like I am starting to get better and have my life back. I guess just going back to the “normal” me.

I always thought they day would come when a cure for asthma was found or my consultant tried a different medication and it worked wonders reducing my asthma symptoms and allowing me to play sport and do all I wanted to do again.

But things never happen as you think they will do they???

Over the past few months I have noticed a difference. A difference I couldn’t put my finger on but something had changed. My breathing seemed more controlled, I didnt feel I was always using my inhaler and I felt less tired even though I still am not sleeping well my body doesn’t feel so fatigued. I have been feeling this way a while but because of how the last years have gone I didnt want to jinks myself incase it was just false hope.

I have been willing my asthma to stay stable and been working so hard to maintain control so many ties over the years but had started to think that the day would never come. I really do think the day is perhaps coming where I am turning the corner and getting better. It is a surreal experience but one I am not taking for granted. Part of me has a fear that this is not going to last and I am jumping the gun so I am not celebrating too much just yet and not pushing myself to do all the things I want to!

It has been a long time coming. Just about 14 years since things started going a little off track, but 11 years since they really took a turn for the worse. There is a theory with asthma about the 7 year cycle. After 7 years it never really got much better but it is 14 years now so I am wondering about a 14 year cycle instead!!!

Im not complaining that things have got better but in some way it feel like an anticlimax. Sounds very odd for me to say but after all the medication, all the hospital admissions I was expecting some miraculous medication to fix things rather than it just to get better on its own. Don’t get me wrong I am over the moon that I have got a lot more control now!

The one thing that I think has made a big difference is the multidisciplinary approach to my care. My consultant has been really good at working with me and reducing my prednisilone something I never thought we would actually achieve but we have. Seeing a psychologist is also really helpful with working through the asthma and its impact on life.

I would love to think that this is it. That my asthma is now on the up and will only go up but I need to be real. It is not as bad as it was but to think I will never end up in hospital again is unrealistic. It would be great but if I was to think I won’t need to go again and I do need the hospital it would be a massive blow, so acknowledging that I might need to go is just keeping it real.

So what has changed??

I don’t know. I am on the same medication, Im doing the same things, Im still following my diet so I cannot pin point any one thing that has made a difference. A combination of looking after myself better, a really good regime with my medication and never missing a dose have probably played a big part in it. I have also mentally changed my outlook to look at the positives rather than focus on what I cannot do but rather what I can do and what I have achieved.

I have decided that once I have a prolonged period of stability for the next month or so then I will really start to increase my exercise and get back some of my fitness again as I am really missing it.

I have no idea if this is it or if this is just a short burst of good health but I a going to grab it with both hands and make the most out of it (within reason I don’t want to push the boundary and trigger an attack!).

Craigmillar Park Charity Golf Day 14th August

DSC01273

On Friday Craigmillar Park Golf Club hosted a charity golf day to raise money for Asthma UK. Golf club Captain Karen wanted to host a charity day and the fact that she chose Asthma UK was brilliant. She had said she never knew how bad asthma could be until she met me. I still can’t quite believe that the chosen charity chosen was Asthma UK.

Despite some very wet weather the day went ahead and it was very successful. With players arriving at 8am for bacon rolls before taking to the course to compete in a variety of different challenges- ranging from closest to the wiggly line to beat the pro. Raffle tickets were purchased by the dozen and the mulligans on offer were a very successful sale with just about every player buying them (only 3 per player and not to be used on the green!!). Golf was followed by a balloon raffle, lunch and presentation of prizes.

DSC01243

For me the day was a real mix of emotion. I was so proud of my club hosting the charity golf day, proud of my captain for choosing Asthma UK and all the help which members of the club put in either by setting up the night before, rules official, manning desks, selling raffle tickets, car parking attendant, entering teams, getting prizes the list is endless and there are not enough thank you’s I can give to let you know how grateful I am.

Asthma UK logo

The day also brought sadness. After the lunch a video was shown about a young girl who died of an asthma attack and why it is vital to raise money for new treatments and the potential to find a cure. The video brought back my own experiences of life threatening asthma attacks, ending up in intensive care and fearing I have no more energy to continue breathing. It not only brought back my own fears but the memories of friends who I have made but have then died of asthma attacks or the consequences of. One particular person Dawn (pictured below) who taught me to follow my dreams and gave me so much encouragement when times were not great and I had long spells in hospital. She sadly died and it was such a waste of such a caring, charming, compassionate person. Asthma should not have killed her but it did and it is people like her I do all I can to raise awareness of asthma and just how much destruction it can do.

263364_2344679095550_2940363_n

 

I briefly spoke about my relationship with Asthma UK and asthma. I find it easier to show my relationship in pictures. You don’t always look ill with asthma unless in an attack. You can’t see diminished lung capacity and function, or the medications needed to keep you going. Instead I showed it in pictures. A collection of pictures from being in hospital, being at home and also my medication. Its a side of asthma that is kept behind a closed door. I think this is the most powerful way to show just what asthma can do.

When setting out the host a charity golf day we had a target of about £4000-£5000 and part of me didn’t want to put my hopes high. Asthma is not one the “sexy” diseases which gets loads of funding from donations. The lack of money in asthma research has meant that in my lifetime there has only been 2 new medications developed which I take but I still end up in hospital. No one really knows how serious it can be unless you know someone or have witnessed someone suffer a severe attack. I don’t think it has sunk in just how much money everyone donated on the day. It was not only the monetary donations but also the time put in by everyone. The total amount raised has not yet been calculated but we have superseded our target.

 

 

 

 

DSC01300

 

(setting the balloon with AUK sticker smiley face into the air (not successfully) but I thought of those who I know who have died from asthma attacks and wished something too!)

The emotions from the day have been playing on my mind a lot. It has brought up a lot of memories I had intentionally buried and not want to deal with as they are too scary and also bring the reality of my situation to the forefront. My asthma is so much better now but is it better because I am not doing anything anymore or is it better because it is actually better and I can start pushing my body. It is like testing the water and seeing what I can and cannot manage.

DSC01228

 

I owe a huge thanks to Janet (pictured left) and her PA who went above and beyond with entering teams, printing flyers, getting prizes donated. Thank you Janet!!

 

11900014_651072870439_3635532639803526952_n

 

Me and Captain KB at the end of a very successful day.

Thank you all once again. Look out for the final total raised.