The uniform that saves me, is it drowning me at the same time?

Since my attack at the end of November/ December I have really struggled mentally and physically. The initial recovery was good, my lung function returned to my normal fairly quickly and my energy stores were up, I was able to get about and get on with my daily routine without much limitation. Reducing steroids was a bit hairy but with the help of my consultant and asthma nurses we managed to keep on top of things although the reduction has only got as far as 30mg but hey its better than 60mg.

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I was confident this speed of return was due to the new treatment I am on but now I am not sure. I think a lot of it probably was at a basic level. The treatment helped me get back to my baseline to function quickly but Im not sure it got me to the baseline for work. I was excited to get back to work but I wonder now if it was too quick and the timing didn’t help. Looking back now despite reduced hours apart from the first week I was never able to get away on time because there were patients who needed to be seen and I was the only one about. I already arrive 30 mins early for work (this is my choice) because I have worked out that this is when there are the least number of people smoking outside the doors mainly due to breakfast and drug round on the wards! Many say that I can get the ward to see the patients etc but being a patient and having had this done to be it breaks the patient nurse relationship and you lose confidence in them so for me it is not an option.

But i now need to put my own health first. I keep going round in circles with it and I love my job and love working with the patients etc but then I get my body into such a state and I often don’t realise it until I am told. Last week I noticed patients commenting on how awful I looked and should I be in work, the people I was in the lift with would ask if I was ok because I was so wheezy, the finally after spending a weekend in bed and thinking I felt better I went into work to be sent home by one of the other charge nurses because I felt so awful and sounded it.

Part of living with a chronic illness is that you don’t often know how bad you are feeling until your on your knees. I know a lot of patients have said the same that they didnt realise how unwell they were until we got them on a treatment and it is once they are established on this that they really see how unwell they were. I think is how I feel that things just decline slowly and it takes a huge attack or event to stop the downward spiral and start getting better again.

Going back to the title of this post. I love putting on my uniform, I worked hard to be able to get it and then be able to keep wearing it. It is also the uniform the nurses who look after me wear as they get me back on my feet and my lungs working a bit better. But then I also wonder if my drive and love of work is also what is causing me to not get to my full potential of wellness. I am really torn with what I should be doing and need to stop and evaluate what is important to me and what is in my best interests.

I have an appointment with my consultant this afternoon where I am going to ask his opinion as I really cant continue as I am. I am back to the point of living to work and that is it. I love my job but need to have more to life than work.

I wish my lungs felt as good as these ones do!!!!

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Making tough choices

Since getting things back on track with work etc I have realised I need to make some tough choices and prioritise what I need to do versus what I want to do.

In 2015 I had the best summer volunteering and recording statistics at the U19 World Lacrosse Championships. 2 weeks of full on lacrosse from watching, commentating, doing first aid, odd jobs and the main thing was stats. It was hard work and meant being outside in rain, wind, more wind and a little sun. So naturally when the Lacrosse World Cup was to be hosted by England and take place in Surrey I was straight on the web and signing up to do statistics again. I was so excited and looking forward to 2 weeks of lacrosse and getting to watch it pitch side and be involved right on the sideline of the competition.

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As time got nearer I have secured accommodation onsite and really looking forward to seeing friends from the FIL again who I worked closely with at the U19 Champs. I was also given the role of 1 of 3 stats leads for the World Cup which I was over the moon about. I was really looking forward to it but recent events was casting doubts into my mind about wether or not I could manage it physically. I didnt doubt my ability in doing stats but my stamina to spend 2 weeks only feet non stop with long days up early and bed late.

So after much thought and consideration I have decided its best not to go down to Surrey. I am really gutted but there will be other World Cups I can volunteer at but I only have one life and I need to concentrate on getting my health back on track and maximising my stamina and not run myself down into the ground where I can’t do my job and feel well.

My work have been fantastic with me and I really can’t jeopardise that at all. I know myself that if I went to Surrey I wouldn’t be able to help myself and wouldn’t be able to say no if I was asked to do extra stuff. I would be running on adrenaline and would try and do all that I could to get the most out of the experience, so I have decided it is best to withdraw from volunteering and not go down.

I will be following the World Cup online and watching the matches and seeing how Scotland do and wishing them on from afar. I will be focusing on getting myself feeling good and getting on top of everything which I hope will mean in the future I can do more and enjoy things like lacrosse again.

It is really hard when things you love have to play second string to what you need to do to look after your health. I remember the days when I really didnt have a care and could do what I wanted when I wanted and not have to think about things so much or worry about having enough medication or what potential triggers could be around causing attacks. Its frustrating but I am hoping by taking these steps will mean that I can miss doing one thing which will allow me to do more and more in the future.

Heres hoping!!!

May is asthma awareness month!!!

May is asthma awareness month. Asthma is a disease which is so misunderstood. Many will live with asthma quite happily and think ‘its just asthma’ but then there is the small portion of people who battle asthma everyday and just getting up in the morning is achievable because of a concoction of medication and then sadly there are those who live with a empty space in their family where a loved one has died as a result of asthma.

So this month my aim is to try and out something everyday which will show what you can do despite asthma, what asthma has stopped people doing, what asthma has caused, what we have learned from having asthma, the day in the life of someone with severe asthma, work and asthma, sport and asthma.

But for today I am going to start on a high and write about the good side of asthma, its not a great disease to have and has dictated most of my life but having said that if I didnt have asthma I would not have had the oppertunity to do some of the most amazing things which I am so proud of.

Just now my biggest honour really is to be part of the ‘Healthcare Hero’s’ Book. I received an email the other day titled ‘Getting our Hero’s Together’. I am hugely proud to be part of the Healthcare Hero’s but have difficulty thinking anything I have done is special. What I do is to try and benefit people but essentially as I have said before if I didnt do things I would curl up in a ball and become depressed about how much asthma has taken from me and what it has stopped me doing becoming a total recluse. To be in a book with some amazing people is a true honour. Just to be along side a man who engineered a device for his own heart so he didnt have t live a life on blood thinning drugs, or the amazing lady behind compassionate care who has sadly died but her husband is continuing her work. To read the stories in the book or online is eye opening just seeing what people will do. So tomorrow I am going to Manchester to meet up with the other Hero’s from the book and for me I will be celebrating World Asthma Day but also overcoming a really difficult time for me personally so by getting myself to Manchester will be a huge achievement.

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Having a piece of writing published in the British Medical Journal was also pretty awesome. What makes it more awesome is that I always struggled with writing throughout my school career and told I was lazy but it was not until I went to do my second degree of Nursing that it was discovered that I was dyslexic and pretty badly which meant I had a reader and scribe in exams and was given all this help to get me through my nursing. So maybe I would have done better than an E in English at school had I known I was dyslexic. I now have a purple cover when reading books and it makes life so much easier. Back then I never thought I wold ever be a published writer but I am. What is even greater is that it was a learning tool for Dr on how to treat an acute asthma attack and seeing this implemented in practice is awesome especially when I was in resus once and one of the Dr’s said they read this piece about the things asthmatics find helpful when having a severe attack. I was able to write to him on the paper and pen he offered me to say I wrote it. I was so chuffed that it has had an effect on some Drs practice.

My next thing which has helped me through the last few years is my involvement in Scotland Lacrosse. After moving from a field position to the goal (18years after last stepping in a goal) I never thought much of it but being able to play for the Scotland B team at Home Internationals was awesome but then after having to stop playing even in goal I was able to take on the position of Assistant Manager which I was kindly given the nickname AssMan (short for assistant manager) which I have decided to own. I am one for nicknames and never been called my real name except at work and research stuff so AssMan joins Tux, Olive, Ollie (of all spellings), Liv, Livi (again many spellings), Wivvers, Wheezer to name a few, I am sure there are more that I have forgotten (or intentionally forgotten). Being able to go to Florida with the Scotland team in the preparation for World Cup was amazing and probably once in a lifetime experience, but I will be able to see them in action at the World Cup as I will not be with the Scotland Team but will be joining the Technical Crew doing match statistics for the World Cup so will be front and central for most matches- although I will need a lot of concentration.

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But my proudest achievement is being part of the Asthma UK Centre for Applied Research as a Patient and Public Involvement lead and helping facilitate SPEAK Asthma- the children and young peoples group. Having a role like this has given me a totally new perspective on research and opened my eyes to how much researching actually going on.  It has also given many other opportunities such as speaking at the Annual Scientific Meeting (and crying during my speech but at least I wasn’t the only one who cried!), giving a lecture to Masters students who are doing a Masters in Clinical Trials, I have been able to go to many different things at the Scottish Parliament and was invited to the British Government last year but sadly due to my asthma I was not able to. I have also spoken at events with GSK and learnt about new medications which are coming out and also now do work with Astra Zeneca for their Patient Centricity program. It is so awesome all the things I have had the chance to do because of the centre let alone all the things I do with them such as lay summary reviews, PhD application reviews, help PhD students, the list is endless and I love every minute of it even when not feeling 100% I still want to go to things as its such a great centre and has really given me my life back and given me something to do when I am not feeling great. It is putting a really big positive spin on a bit of a rubbish situation.

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I have things coming up in the near future which I am looking forward to such as the Usher Institute Showcase and being involved in things with the European Respiratory Society as well as getting emails from a variety of different researchers (not part of the centre but from all over the world) who have read this blog and want to get in touch.

I guess having things I am proud of really do keep me going when things are not so good. I was able to draw on these things when I was last in hospital and didnt think I was that unwell but was as my best friend thought I was drunk with the messages I was sending but the admission was really hard especially the 3rd time the ITU Drs came to see me and this was after being discharged from ICU but kept getting worse again and I really thought I didnt have the fight left in me to keep going and not let the attack get the better of me but thinking about all these things I am proud of makes the fight worthwhile- that and thinking of all the Scotland players as they do their insane strength and conditioning stuff- I guess asthma attacks are my version of strength and conditioning although an asthma attack burns and insane amount of calories as I found out from waring my FitBit during one attack!!!

But keep hold of the positive things in your life and these will keep you going and help you reach and achieve your goals no matter how big or small they are.

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(I got this bracelet from a really good friend who knows just how tough life is with rubbish lungs but this saying says it all!!)

“Just relax and concentrate on your breathing”

I smile to myself as I write this post for a number of reasons. It seems apt to write this while I can’t sleep because of my asthma and am sitting on the couch hunched over with a neb making it easier to breathe- I wish I could just relax back it would be so nice.

But I have the biggest smile because just about a year ago I was asked if I would be interested in writing an article for the British Medical Journal (BMJ). I agreed. It was for a patient series called “What your patient is thinking!”.

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I obviously focused on asthma, but concentrated on one specific part of asthma and that was during an exacerbation which results in you ending up in Accident and Emergency. The piece was to be written as a learning tool for Dr’s to help them make the patient experience a better one. Sometimes patients may have a bad experience in hospital and it is not because of lack of care but sometimes they way they are spoken to, or they are not listened to etc. There can be a variety of little things that can really make a difference to the outcome for the patient.

I had three key points I wanted to share, and am pleased that so many people have commented on the piece saying they have felt the same but they thought they were the only ones who felt as they did. The points were:

let the patient be comfy- when struggling to breathe there is no comfy position but a patient will have a way they want to sit or find they get some respite. I like to sit bolt up right or brace myself against my knees leaning forward a bit.

Please don’t say “just relax and concentrate on your breathing”- it seems like a very kind an innocent thing to say but it gets really wearing on a patient when everyone they see in A&E tells them this but in reality you can’t relax and the more you concentrate on your breathing the more you focus on how hard and terrifying the situation is and therefore end up making the whole thing worse by adding panic into the mix of an asthma attack. Often as medical practitioners we don’t think how the patient may feel hen we try to say things of comfort like this. It is my pet peeve in hospital and grates on me when someone says that!

Lastly was to give the patient time to talk, it may look difficult and hard work but if the patient is wanting to talk let them, or offer them pen and paper if it looks like it is too much work. Often the patient can tell you vital information about their asthma and things that will help which can help speed the recovery of the attack up. I do find that I want to talk unless I am at the point of exhaustion and even breathing just feels like too big an effort. By focusing on getting my words out I am not focusing on the difficulty breathing and can find talking distracting sometimes. If I don’t want to talk I won’t but I really appreciate it when a Dr will take the time to listen even if it is 2-3 words between breathes.

I hate to think that others go through hard times with their asthma and have rough experiences in A and E but I have really appreciated the comments from people who read the article and that they can relate to it. I didnt only want to write it for me but for everyone who attends anywhere with asthma, or an asthma attack as generally we all feel kind of similar so I hope that more people can read this and maybe perhaps make even just one patients experience of asthma better.

I am also having a small chuckle to myself because I still cannot believe I have published an article in a journal. When I did Sports Science when I first left school I always dreamt about having a journal published but back then never did I think it would be something like this. If I am honest being published was a bit of a pipe dream. Especially as I got an E at my A Level English despite working my ass off but thankfully (i think thats the right word) when I sat an entrance test to do my Nursing they picked up that I am pretty badly dyslexic because I write my letters back to front and some other things. This discovery has been a blessing as it means I may very well get more things published as I have really enjoyed doing it and really enjoy writing wether it is for my blog or PPI stuff or work. I do wonder though what my English teacher would think now after years of despair trying to teach me- it was like teaching the unteachable!

I want to say a massive Thank you to all the kind comments I have received about my piece and if you want to print it and share it with others please do. The more people who read it the better!!

http://www.bmj.com/content/351/bmj.h6185

Your Boss, you, occupational health and asthma!

In this blog I openly talk about my asthma and how it effects me. The highs and lows and everything in between. One thing I am not so good at though is actually talking in real life about my asthma. I can do the factual stuff…what my meds are, what my pf is, my symptoms e.g. wheezing etc but getting down to the nitty gritty and how I feel about it I always answer with one of two words. I either say “I’m fine” or “I’m okay”. According to my step mum if I answer any other way things must be bad. To me saying I feel awful is almost giving in to asthma. I am never (touch wood) really ill with anything other than my chest and it is so extreme its rubbish and hard to admit when you are otherwise pretty fit and well. Which to say I am fit and well is a bit of a stretch but if it were not for my asthma then I would be really fit and really well. Everything that is wrong is as a consequence of brittle asthma!!!

Back to the point of the post.

One thing i have learned over the past 10 years which I want to share as it is so important. As much as my asthma is pretty visible I do try to hide just how bad it is. When it comes to work or university this is not something that I should ever have done. Through my first stint at university I really tried to hide how ill I was. Despite being in and out of hospital I continued to try and play football. I tried to keep up with lectures and never applied for extra help. This was a huge mistake. By pushing myself harder and harder probably made things worse.

Second time round at university to study nursing I was more open. I went to the disability services and told them about my asthma (and dyslexia) and got the support I needed. This then lead into my career and my employer knowing about my asthma. I am not sure how open I would have been had I not had an attack at work and also had to miss some time on placement because of hospital admission. So as a student my boss to be had seen me when I was bad and knew what it was like. This was good. I didnt have to talk about it but everyone was aware.

I always thought that it would prevent me from getting a job and part of me wanted to hide it so no one would know. But I was not able to do this. Over time i have come to see that by acknowledging how bad my asthma is I will actually get the support I need and I think my employer appreciates being honest.

Working in the NHS I am always worried I will get redeployed but I have had such great support from my charge nurse, clinical nurse manager and occupational health. I think my work ethic has helped keep me working where I am but also by accepting the support that they offer has meant they can see I still want to work no matter what but that I am acknowledging that I can’t always stay where I am.

Seeing occupational health to me is such a hassle. It is a tick box exercise and just another hospital appointment I need to attend. I never like to attend hospital appointments on days I work as do get quite worked up by them. By attending the appointment I am showing I am accepting the help but also I do tell them how I am feeling and can show them how I am trying to get my health better by getting second opinions etc. This to me is important because I feel it shows them that I am not happy with the way my health is and want to do whatever I can to make it better. If I just gave up and sometimes I do feel like it, then there is no point in my employers and occupational health putting the effort to keep me in the job I love.

I think what I am trying to say is that no matter what when you have a physical condition no matter how hard you try you cannot hide it. I have had my charge nurse see me in the High Dependancy Unit fighting to breathe and try to hold a conversation. You can’t hide from it when you work in the same place that your a patient. You also never know when asthma will strike so I have learned that way not to hide it because then people know what to do and what to expect! By talking about it with the correct people you can get the support and not get left floundering trying to keep yourself at work but also have a life. This is one of the big things I was lacking. I was so focused on keeping myself well enough to work that my days off were spent in bed trying to get better to face the next day. I now work shortened days which lets me enjoy my days off and not be totally exhausted.

I will still never really admit how awful I feel sometimes as on a day to day basis people don’t need to know it. They don’t need to know about the constant pain in my chest or that my chest is so tight or that I didnt sleep a wink because I was either having a neb or up coughing. People don’t need to now that because it is part of everyday life. It would be the same thing over and over again and never really saying much positive so by saying I am fine or okay is so much easier and doesn’t invite questions that I don’t want t answer!!!

Opening up to my bosses and occupational health is a big step. I want to be able to say more easily when I am not doing great but just hate complaining. Writing here I can say exactly how I feel as others who read this will often understand as they are either in a similar situation or have an interest in asthma and want to learn how someone actually feels and what it is like to live with on a day to day basis.

Be honest about your health. You don’t need to wear a post it on your head saying your ill but tell the relevant people and get the support you need. I am sure I could have had a lot less stress and perhaps less hospital admissions if i had been more open and honest about my health all those years ago!

1st Year in 1 year!!!

Yesterday i complete first year of my nursing course and managed to do it in one year!!! The last few years have been really tricky and I have had to complete my courses for each year over two years instead of one year so to be able to stay with my peers is such a boost for me. I am over the moon. I have had an awesome year. It has had its up and downs as to be expected but it has gone so much smoother than I thought it would have gone. I have made some great friends and my placements have all been brilliant.

I now face second year which everyone seems to stay is so hard and it really steps up a gear so I will need to start working and really dedicate proper study time to it and not jsut try and slot it in around golf and work. golf and work will need to fit in around studying I think.

I have leant so much about myself this year as well. I was very low in confidence before I went back to uni to start my nursing. I think mainly because to me I had failed in my sports. My asthma had one and I found this hard to deal with. I was scared that once again my asthma would win and it would prevent me from completing my course and becoming a registered nurse. It hasn’t. I have made a conscious effort to be more open about my health to people and not just to my online community and also accept when I need help and when I need to take time out and just gather myself and then get back to it. This has made a big difference although I am still trying to get to grips with sometimes just blanking a day in my diary to do nothing…I am not very good at the doing nothing part but I will get there.

I still have my bad days with my chest but thankfully they are becoming more manageable as I listen to my body more. I still have a lot of issues to sort out with my consultant but there is part of me that seems to get scared when i go to see him and just don’t talk about a lot of it. Mainly because I am fed up of going back and forth to the hospital and kind of hope that if I say I am fine he will just discharge me from his care- although this is a long shot and I know that this will not happen any time soon if at all!!!! I have my con on Monday and have a few issues i need to discuss but am tempted to go and see my GP with them as I am not sure if they are asthma linked or not. I keep fainting a lot and not sure why. I am not one to faint and never really get headaches but recently I have been getting a lot of headaches and fainting about 9 times in the past few months which is freaking me out a little bit. I am wondering if it is my new meds or what. We will see what Monday brings.

In the mean time I am on the golf course tomorrow!!!! who would have guessed the first free day I have and I go to play golf!!!!!

This time last year

I was jsut contemplating life as you do on a sunday afternoon when I thought back to where I was a year ago today. Although I didnt share it in my blog I was struggling emotionally with my asthma. I had jsut moved back home after having to leave university and accept that my asthma was not as good as I would like to think it is.

I remember feeling humiliated when I was having to use a golf buggy to help me round the golf course and would need at least 5 nebs to get me through it. I didnt have a job and really didnt know what I was going to do as my life jsut seemed to be turned upside down. Before my asthma got bad all my life was was sport. I lived sport ate sport and breathed sport. It was all I knew how to do.

It was about may time that I looked into doing nursing as I had spent so much time in hospital I thought I could put what I had seen to good use and also my interest in respiratory diseases and research.

I think last years putting asthma in the limelight week really helped me and showed me that jsut because I ahd asthma and was now prevented from doing sport that it didnt have to be the end of my life. It was jsut the beginning of the next chapter. And I have to say that despite all the close calls and hospital admissions and the stress I put my family and friends through with being ill it was worth it as I love my life. I may not be doing what i ahd dreamt about but now this dream I have is far bigger and better than playing sport for my career.

Playing sport was only benefitting myself. Noone else benefited out of me playing sport whereas now I am able to give something back as care for people. I can watch them get beter from illness or make people comfortable who may not be able to get better and who are in the last stages of their life. I love what I do and if I was to say when I was at school if I ever thoguht I would be a nurse I would have to say NO. It was last on my list of things to do. I dont know why but I think my life experiences have taken me down a path and I have been taken on this path for a reason.