Another chapter ending in my life

“the uniform I love is the uniform that saves me and is killing me” has been a statement I have written many times over the years.

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I posted on social media a few weeks ago now to say that I would not be coming back to my job as a community dialysis nurse. I would be ending my career as a nurse come April 2020.

It has not been a decision I have taken lightly. I have spoken to a number of different people including my family, respiratory team and my bosses at work. Last January I was not in a good place physically or mentally. I had come off the back of a really bad run of asthma attacks a rough hospital admission and for the first time ever I did not feel able to go back to work. Fast forward a year and rather my health being better I am in a worse situation, my health is at an all time low and it is hard to cope with my daily life and everyday tasks. I am relying on my mum more and more so there is no way I could continue working.

I am beyond devastated at having to give up nursing. I fell into nursing after having to give up a career in sport. I was determined that I would do all I could to get myself through university and qualify as a nurse. It was hard but I did it with the support of my tutors and of course my consultant. Soon after qualifying I got my dream job working in the renal unit which is where I stayed. I was so fortunate to have really understanding bosses who were so accommodating and made changes to help me and enable me to continue doing the job I love. I pushed on so much and often worked when potentially I should not have but it is because I genuinely loved my job. I loved the patient interaction, trying to help patients manage their condition and get the most out of their life.

Closing this chapter does not mean it is the end of nursing forever. Nursing is a career I will always be able to come back to when my health is better. For now it is just on pause.

A lot of people have been asking what I am going to do and will I manage ok without having an income. These are things that I will talk about in another post. Im am so gutted but it is for the best. My patients, colleagues and family were worrying about me when I was working and if I was ok. They were seeing that I was having no quality of life and I was living to work and that was it.

Nursing may have been put on hold just now but I am not going to give up on my dreams.

 

Getting medication on time.

I am not actually sure what title to give this post.

I was recently in a consultation type meeting with a range of service users to discuss the nursing program at one of the universities in Edinburgh. They are being revalidated and want to make sure that the course is producing the best possible nurses it can who are fully prepared for life as a staff nurse.

One thing that came up that has been preying on my mind and the more I think about it the more it bothers me. As the group was made up of a range of people age, gender, background, reason for being at the consultation. There were a few people there representing Parkinson’s- either as someone with Parkinson’s, a carer or someone who works for Parkinsons UK.

The issue of medication came up in conversation and it felt like some had a bit of an agenda as they kept going on about how people with Parkinson’s when in hospital must get their medications the right time otherwise their can be negative effects if it is late. This was a statement that was repeated many times stating that the medication often had to be given out with normal drug rounds.

It felt like to me that those with Parkinson’s,their medication was more important than other patients who need medication. I take medication which is prolonged release and has to be taken at specific times which are out with normal drug rounds and must be taken otherwise blood levels drop and this can have a detrimental effect on my breathing and could cause an attack which may or may not end up needing intensive care.

What bothered me so much is that there was no regard for other people and their conditions and the medication that they are on. I know from experience of doing drug rounds it is very difficult to juggle everything but we do our best. Every patient is just as important as the next and every patients medication is just as important to them as all the other patients. If a patient was able I would ask them to remind me to come and give them their medication if it was out with a drug round or if able I would let them self medicate so they would get their medication when it was due. This can not always be done so we as nurses need to remember and we do try. I was thinking as a nurse if I went into a bay of patients and only did one patients drugs and told the others they would get theirs done in time but this patient needed their now. It would make me feel like I was selecting this patient and treating them differently to the others.

What I am trying to get across is that every patient is just as important as the next and everyones medication is just as important to them as the next persons. There are many medications which like the medication for Parkinson’s needs to be given at set times otherwise there is detrimental effects. I really felt like there was no regard for other people and their condition. Parkinsons is an awful condition and I have a good friend who has had Parkinson’s since the age of 8 but getting medication on time is just as important for us as well.

Im not sure if I am saying thins properly and if its making sense but everyone is just as important and medication  being on time is no more important for someone with Parkinson’s than someone with diabetes or asthma for example.

As a patient I advocate for myself. I ask the nurses if I can self medicate that way I remove the anxiety that can develop if I am not able to get medication when I need it. For example if my chest is very wheezy I am able to put a nebuliser on and then let the nurses know, or if my prolonged release theophylline is due I ask the nurses for it or if they are doing a drug round ahead of time I ask if they can leave it out so I can take it when it was time. Nurses try their best and do what they can but we as patients need to advocate for ourselves to make sure we get what we need when we need it but doing it in a way that is not being disruptive and demanding.

I hope I have not come across as disregarding people with Parkinson’s and the importance of their medication as I know it is important but other medications for people are just as important. I always worry when I attend these type of consultations when there is a few who seem to have an agenda or dominate conversation.

I am going to leave this now but would appreciate others thoughts on this post as it has had me thinking a lot.

2019 the good, the bad & the ugly

With the new year fast approaching I like to reflect back on how the year has been and what I have achieved. Last years post can be found here .

My thought for 2019 was:

2019 is going to be a great year, a year to focus on achieving the best health I can and enjoy life again. There will be hiccups, there will be hospital admissions but rather than feeling defeated by this I will accept them as part of my life and ongoing management!

Well I guess some of it is correct but I am pretty sure when I wrote that I did not think I would be in the position I am now in, it has not been all bad though!

I have focused on trying to improve my health. I made decisions and took steps I never thought I would to really put my body first. I gave up working in the hospital to try and get my breathing better. To start with this was going well but after a few very traumatic asthma attacks my life has been changed and Ia have been left with more permanent damage and had to come of biologic treatment as a result. I am working hard though to over come this. I am determined I will get my independence back and be able to walk without a stick. I may not get the feeling back in my leg but I can work with this. Along with work I decided to not travel to various things mainly lacrosse because I felt I would not be supported and I would not be able to prioritise myself.

I have continued coaching lacrosse at schools, universities and with Scotland. I gave up working with the senior team and focus on working with the goalkeepers in the U19 set up which has been so rewarding. The U19 also brought me all sorts of things back from their World Cup which I was gutted I couldn’t go to- mainly due to poor communication from the seniors letting me think something different but then it turned out I was in hospital too for it. I am looking forward to this year and being back with the U19 Scotland team. I am still coaching at schools and picked up a 2nd team at Edinburgh University so now coach the 2nd’s and the 3rd’s. I am loving coaching and find it so rewarding.

Research and advocacy as always has been a big part of the year. In fact travelling to a huge advocacy conference in Dallas was life changing. The HealtheVoices event was something else. I loved every minute of it. I made so many friends and realised that I am not alone in what I am trying to achieve. Speaking about your own experiences and how to navigate living life with a chronic health condition is beneficial for others. You can make changes even if they are small. I will be forever grateful for my time in Dallas. I also had other events where I was presenting including some pharmacuetical internal events, wider NHS events where I made some great friends and we are going to try and pull off some great things this year, went to Madrid for the European Respiratory Society Congress where I had a poster accepted for the patient day, presented a poster at the AUKCAR ASM as well as some other virtual events too. It has been busy and I think will only get busier this year. I have been able to write for a pharma company who have a website called Life Effects where I can write articles about my experience of living with severe asthma. Off the back of HealtheVoices I became a PEARLS Ambassador through the work of Rick Guidotti which has been great and have got to know some of the other ambassadors too.  So far I have several events planned for 2020 that I am speaking at and I am sure there will be more as the year goes on.

The biggest part of this year has been getting Ghillie. Ghillie has been life changing. I cannot believe that I got him in April. I cant imagine life without him now. He is achieving so much and is always there for me. I will do a post just for him to update on how he is and what he is doing. I never thought he would be as good as he is now. He can be a total monkey but then when I am not feeling good or am struggling he is there to comfort me and help me with things. Topping the year off with him being a feature in a newspaper article all about what his role is as my assistance dog.

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What are my hopes and aspirations for 2020. I want to continue as I have with 2019. Focus on my health and do what I need to do to ensure it can be the best it can be. I am sure like with 2019 there will be hospital admissions, hard times, illness, frustrations but I can over come them. I just need to be patient and work my way through things. I want to grow my toolbox of skills that I can use to better myself and use my experiences to help others. My friendships this year have suffered a lot- mainly because I have struggled so much and been so unwell that I cant attend things so I end up bailing on friends and they get bored with me always cancelling so don’t invite me to things anymore. I want to try and change this and make a real effort to go to things. I value my friendships so much and don’t want to lose anymore.

2020 is going to be a year of positivity, focusing on finding my best self and feeling content with life.

I hope everyone has a fantastic 2020.

Live the life you want to live.

Why does a journalist want to do a feature on his sister with asthma??

Recently I shared a link to a story my brother wrote. It was about me living my life with severe asthma.  He is a journalist with the Daily Record and is doing some pieces on asthma, smoking on hospital sites (one of my hobby horses) and some other things.

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(I apparently don’t have many photos of us together so this will have to do. Taking me off the ward when in hospital. I was lucky to get back to the ward alive with his driving of the hospital wheelchair!!)

I wanted to ask him a few questions (it turned out to literally be a few) on why he wanted to do a piece about me and my story of living with severe asthma. I am really proud of him for doing this especially as asthma is destroying so many peoples lives yet asthma is dismissed and not thought to be that serious by the majority of the population.

Below is his answers to my questions!

Why did you want to do the piece?

Without a doubt it was from seeing what you have gone through over the years, particularly in the last few when I have been around it more. It’s really not a well-understood condition from a layman’s point of view. People just think it’s ‘a bad cough’ or getting out of breathe when you play sport, but nobody sees the sinister way it can affect someone’s life.

Health stories are such a massive and important part of the media, particularly in how it can help activism and help push the conversation surrounding policy. I don’t think asthma gets the coverage it deserves. Talking to people who face a daily struggle with illness and putting their journeys in the public eye helps others open up and deal with their own conditions. But asthma suffers don’t have that voice like other illnesses like cancer or MS. Obviously as your annoying wee brother I have seen you at your best and worst with asthma, and it’s so inspiring. I wanted your journey to help others above all else.

On the other hand, it was so important to include the work you do behind the scenes for Asthma UK and other charities. Covering topics like correct techniques for taking medication and attitudes towards asthma help stimulate conversation, even on a day-to-day basis, from a light natter over Sunday lunch to discussions between health professionals.

How did covering the story affect your understanding of asthma?

Without a shadow of a doubt the amount of medication someone with severe asthma – and knock-on conditions – must take on a daily basis. I knew your asthma was bad through years of hospital visits and attacks, as well as using it to my advantage to beat you at golf (still not sorry). That hit home in a big way when you were placed on a ventilator recently – it was actually what prompted me to want to do the story. So I guess you could say that I knew how bad it could get before doing the piece, but only just before I sat down to write it.

But the medication routine was what really hit me hard. The sheer volume of treatments you have to take every single day was staggering, and shocked many of my colleagues. Knowing how you still get on with your life, throw yourself into activism and sport wherever you can, makes that even more staggering. To be taking 38 treatments daily at the age of 33 is mind blowing. I think getting that across to people really helps them to take it just as seriously as other, more talked about conditions

International Nurses Day

The birthday of Florence Nightingale it is only natural that this is also international nurses day given she was the founder of modern nursing as we know it.

When I left school I was the last person anyone would have thought would be a nurse. All I did was sport, all I talked about was sport. I was sport and it was all I had. A series of events happened in life and I had to rethink my career and I somehow ended up doing nursing and I could not be happier!!! I had so much fun doing my training and then got a job in an area I never thought I would end up but being a renal nurse is pretty special and I don’t think any other area you will get the same relationship between nurses, patients, Drs and families.

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This photo was taken just after we passed our final OSCE’s in 3rd year!!!

I miss putting on my cornflower blue uniform everyday. I loved being a nurse and will be back as a nurse when my lungs get better. Being a nurse is hard work, busy, never time for a rest and you never know what will happen next but seeing the improvements in patients is the best feeling you can have. Even if it is the little things like sitting chatting to them or helping them with a wash and getting their own clothes on, it is so rewarding. For me it is even more special as I have been on the receiving end of nursing care so many times and the nurses that take that extra bit of time to just do that little something means so much to me.

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This uniform means so much to so many. For me it gives me a purpose. While not being in renal this year I keep my uniform out so on days when I am feeling dejected and thinking about what I should be doing had my health not stopped me, it is there reminding me what I am aiming to get back to. My life as a nurse is not over, it is temporarily on hold, while I focus on research and getting my health better so I can go back to doing what I love with a body that can cope and the energy to give it my all.

I also owe my life to nurses. Having asthma like I do and requiring hospital treatment, admissions and appointments I come across a lot of nurses. The nurses have made sure I am alright, helped me wash when I am too weak to do it myself, helped me go to the toilet when just moving from the bed to commode is too much for my lungs, even just holding my hand when I am finding the situation terrifying because every breath is a fight and requires more energy than I can muster. The presence of a nurse just being there adds this security so I know I am ok.

When you live with a chronic condition which lands you in hospital fairly often you end up getting to know the staff in the wards. For me it is the respiratory ward. I always end up going to the same one now particularly since moving consultants. I also have to go to the respiratory ward once a month for my mepolizumab injection which is given to me by the asthma nurse specialists who take such care and will always answer questions I have or even just reassure me that I have done the right thing. One draw back which when I am not in hospital it is not a draw back is that the nurses now know me well. They will not hold back when they know I need pushed and just to buck up a bit. They will tell me to stop being stupid or stop being grumpy etc, at the time I hate them for it but I know they are doing it for my own good otherwise I would wallow in self-pity until I snapped myself out of it. Equally those nurses know when I am not doing well and am struggling, because they know me they know when something is up.

In NHS Lothian there is an awards night which celebrates the work of different people across the trust. Not only nurses, but Dr’s auxillaries, domestics anyone. The shortlist has just been released and it was fantastic to see one of the nurses from Ward 54 (the respiratory ward I attend) is up for Nurse of the year. I am thrilled as he is super. I have known him for a number of years, he is always so caring and takes time with his patients even when he has 101 things to do you never feel like you are being rushed, he gives you the time you need. He also always speak to your relatives and takes an interest which is really special. Nurses just now are stretched beyond belief, moral is low and nurses are required to do more and more jobs than before but with this nurse you would never guess. I really hope he does win the nurse of the year as he is so genuine and acts the same way to all his patients.

I want to thank all the nurses who have looked after me and worked with me. If it was not for them I would not be here.

Just use appropriate pictures!!!

I really can’t believe its been a week since I got back to the UK and Healthevoices is over. I still can’t put into words how I feel about it. It was nothing I could ever imagine and really can’t put it in words. It was truly fantastic.

Before I settle to write about the HealtheVoices experience there is something that was posted recently which has really caused a lot of uproar.

Asthma hits the headlines for all the wrong reasons all the time. Normally it is the number of asthma deaths that are occurring hits the headlines which shockingly is at 3 every day in the UK and 11 in the US everyday. Way way to high for a condition that is fairly common but equally under funded.

One of the reasons given to the poor asthma death rate is poor asthma management and poor inhaler technique. There has been a massive push recently in primary care and secondary care to ensure that patients are taking their inhalers when they need to but not only when they need to we need to make sure they are being taken correctly. Unlike tablets which can only really betaken on way, or injections again which when subcutaneous you can’t go massively wrong however inhalers is a whole new board game. The sheer number of different types of inhalers then the need for multi tasking when taking them as you need to breath in, spray inhaler, then take it and hold your breath. There is not enough time given to assessing the type of inhaler which will be best for the patient and suit their needs. Especially the younger people and again older people due to dexterity issues. Even being young, fit and with it taking an inhaler correctly can be hard.

I like to think my inhaler technique is pretty good. I do and have been told on occasion that my technique specifically using my MDI (the traditional spray) inhaler is not quite right. I was even told at an asthma research meeting by one of the Dr’s there my technique was questionable but he said he let me away with it as I was about to go on stage to speak in front of about 150 people. But it shows that even those who can have good technique can slip when not concentrating 100% on what they are doing.

Asthma nurses, dr’s, patients and researchers on twitter were in uproar after the below photo was posted by the National Institute for Clinical Excellence (NICE).

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This picture is a complete 101 on how not to take your inhaler. Everything about it is wrong. Quite rightly everyone has been very annoyed by the main centre of excellence for health in the UK getting a photo so wrong. They have clearly not taken any time over selecting a picture or thought about the impression it is going to have on anyone that sees it.

This is not a new issue. Every week there are photos printed/posted relating to asthma which do not show good inhaler technique or even a technique which is relating to the current guidelines. It seems that everyone has their image bank and go to that, select a nice photo and that’s the one that is used.

I have and I am sure many others have come to the conclusion that the image banks have not been updated and are all out of date and not in keeping with current best practice.

As a result of this I have decided to try and make a change. I want to update these image banks and have a wide range of photos, some of older people using their inhaler, some younger people, a mix of devices as well but the key thing is to have the photos which display the current best practice.

I have been very fortunate to have so many people come forward to help with this so I am keen to get started. I have never done anything like this before but the hope is there will be more photos like the one below and zero photos appearing similar to the above.

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It’s ok to not be ok.

This past week has been really tough. Asthma is one of those conditions that is on a spectrum. Going from those with the mildest of asthma to those with the most severe and life threatening asthma you get everyone across the board and you can not pick out the one person with mild and the one person with severe asthma. You can’t see asthma, sometimes you can hear it depending on how wheezy you are!!!

Recovery from this last hiccup has taken a lot longer than I ever anticipated. It was not the worst of attacks but equally was not the mildest either. I was only in hospital for a week yet it has taken me a good 3 weeks to get back on my feet and still Im not there yet.

I have been so fortunate this time to have the support of my consultant. When I say support I mean that should I have issues he has said so many times that I just need to call his secretary and she will get him to call me back or the resp reg on call to give me a call. Having that support is so reassuring to me it makes life that little bit easier. Also being seen in clinic every month (which is a faff but won’t be forever) and then on top of that I am at the ward once a month too for my mepolizumab injection with the asthma nurse specialists so if I have any issues I can ask them too.

As much support as there is they cannot speed up the recovery process and help with the everyday symptoms that just take time. The never ending fatigue that no matter how much you rest it just doesn’t go away (Thanks to prednisolone contributing to that), and no it doesn’t help by getting a good night sleep. It is a fatigue that is unlike no other- a fatigue that having a nap won’t fix, it is a feeling where your whole body feels double its weight, you are not tired and sleeping doesn’t help, but you just cant do anything. Until you have experienced it (which I hope you won’t) you have no idea what it is like. This is the really hard bit. Fatigue you cant see, and asthma you cant see.

Keeping your mind motivated is really hard when your body is preventing you from doing what you love. This is the challenge I keep facing. This time of year its all about Christmas, Christmas Parties, going out with friends, shopping and enjoying the festive period, but I feel like I am sitting watching the world go by and seeing photos of people enjoying themselves but I haven’t been able to join them. Just going to the shops to get the messages is hard enough leaving me exhausted.

One big thing that I am really finding hard and one friend who is also on biologic therapy said this can be a side effect is speed of recovery as well as joint and muscle weakness. Speed of recovery has been slow but as I keep trying to tell myself slow and steady wins the race- but truthfully its getting really wearing now. The other thing is the joint and muscles weakness. I always have some weakness after being in hospital as for most of it I am bed bound and not able to get up due to the inability to breath and also the number of IV lines I have which are often in my feet making walking a challenge. Building up slowly isn’t helping. The only way I can describe it is having DOMS (delayed onset muscle soreness) but having DOMS that won’t go away. Normally lasting 48 hours this has been 2 weeks now and my quads feel like they are ripping in half every time I go to sit down or stand up, occasionally jerking as I walk too, stairs are an interesting experience- thankfully I have a lift in my building so can avoid the stairs!!!

I am desperate to get back to work and my consultant knows this. I see him tomorrow to hopefully get the ok. I know it will be tough going back to work but I need something to mentally challenge me. I having been doing bits and pieces of research and evaluation of research conferences too. Evaluation forms I find are so hit or miss especially when there has been positive or negative things that you want to acknowledge etc- there is never the room and I end up putting a covering letter along with the form.

This whole recovery process and hospital admission this time has taught me a lot. The main thing I guess I have finally accepted is that it is ok to not be ok. It is ok to ask for help and admit when you are defeated. Over the years I have been made to see a psychologist to help me deal with life with severe asthma. You could say I was a bit resistant to it initially. I think it was the stigma I associated with it. I felt that if I was seeing a psychologist then something was wrong with me mentally and actually my problems were psychological rather than physical. I think I made this assumption because I was young (this was over 12 years ago) and at the time there was really not much openness about mental health and it really was stigmatised. In more recent years as my asthma has impacted my life in ways I never thought it would and prevented me doing more than I ever thought I have been so thankfully to have access to a psychologist  who I can see regularly and help deal with the restrictive aspects of living with such severe asthma. What I have found though is that I have focused so much on adapting life to cope with my asthma and the majority has been on pacing. I didn’t realise that a major area which we never worked on or spoke about was the severe life threatening attack that comes out the blue much like this last one was, and also the trauma after it. It has almost felt like a mild version of post traumatic stress because even at clinic last week I got this huge sense of fear when I saw those windows of the ICU again.

So tomorrow I have a variety of different appointments all at different hospitals. The morning I have the asthma nurse specialists for my mepolizumab injection and review with my consultant, then the eye pavilion to have tests done on my eye that has lost its peripheral vision and then over to the royal infirmary to see the psychologist and will go up to see work and discuss coming back.

I hope that getting back to work and routine will maybe improve the fatigue I have and give me a purpose to my day again.