PPI is so much more than just patient and public involvement.

I really cant believe that on May 6th it will be 4 years since I was introduced to the research world and the concept of patient and public involvement. Its strange to think of life without it and I cant think of what I did with my spare time or down time- probably watch some rubbish on TV.

Reflecting back I never thought that PPI could involve so many different things and present so many different opportunities. When I first started out exploring PPI and getting tasks it was mainly reviewing lay summaries or patient information leaflets. I didn’t know if what I was doing was correct but I got asked to do more so I must have been doing something right.

Over time PPI has taken me in so many directions and to so many different places. It is the one aspect of my life that I know I will always have. I cant guarantee that I will have my job and be able to retire when I want to, I cant guarantee that I can be involved in Scotland Lacrosse and Capital for as long as I want. My health will no doubt dictate when I have to stop both of those (I am hoping there is a good many years left for both) but the one thing I will always be able to do no matter what is patient and public involvement. I really cant believe I had a life without it. It has given me so much and so many skills that I never would have had and those I did have I have been able to develop them.

I talk a lot about patient and public involvement in research but that is because I am so grateful for it and can see first hand the impact it has on research. I want to be able to give others the opportunity to benefit the way I have. You don’t just to have asthma, you can have any condition or not even have a condition but an interest in research and the research process. Being recognise not as a patient but as a colleague among researchers and seen as an equal.

For the first time recently I have been able to combine my experiences of PPI and lay summary reviewing with my work life as a nurse. I have had the chance to help design patient information leaflets to be used in renal. Having this chance I want to see if it is possible for more patients who I work with and look after to have the opportunities that I have had. I know it is not for everyone but there will be some who want that stimulation despite having their renal disease.

As my experience builds I have evolved from being that patient who does PPI to one who helps teach about PPI and help researchers find the best way to involve patients in their research, helping them work alongside patients to get the best possible outcome for their research and the condition they are focusing on.

My role has gone from being part of a group to helping set up groups, talking at conferences emphasising the importance of PPI in research and how to do it well and what to not do. It has also gone from speaking at courses on a local level to presenting on a global scale when I talk about my experiences of PPI on the Clinical Trials Masters run by the University of Edinburgh which is a distance learning course with students enrolling from Kenya, Asia and various other countries.

I have gained so many positive things from PPI that anyone else who is thinking about maybe getting involved I would certainly recommend it. For me it isn’t even taxing. I spend my days off attending different events and it doesn’t even feel like hard work, it comes easy to me and I really enjoy it- much like I used to enjoy playing sport of going to the gym. I get the same satisfaction doing PPI, I think because it is something that I can do and anyone can do no matter how physically unable you are to carry out work or have to be sitting not exerting yourself but are able to mentally challenge your brain and keep occupied.

The next few months are going to be busy with a trip to London to speak at a data funding call, going to Zurich with the European Lung Foundation, Glasgow  for a nursing meeting and I am sure there will be other things filling up the diary soon.

Cleaning products and lung health

Reading the BBC news online I came across an article about cleaning products and lung health. A study carried out in Norway found that using a micro fibre cloth and water was suitable for most purposes rather than the products full of chemicals which advertise themselves as killing 99.9% of all bacteria etc.

Cleaning particularly house work is something that has to be done in all homes, offices, public places etc. There is no getting away from it unless you prefer to be in an area which is not cleaned. Not many people enjoy cleaning and it is a chore rather than a hobby or enjoyable past time (forgive me as I know there are some people who do enjoy cleaning and find it therapeutic) with needs to be done. Many will leave it as long as they can possibly get away with before they get the mop, bucket and all the different cleaning products out to make everything sparkle and smell nice while removing the limescale, grease, dust etc from surfaces.

The reason I am writing about this is because for some people like myself cleaning and cleaning products can be life threatening causing acute breathing difficulties and allergic reactions. A study highlighting that water and micro fibre clothes are just as good as Mr Muscle, Cif, Cilit Bang and all the other products which you end up buying which all have a different job to do in the house is fantastic and could potentially remove a massive risk to my health.

You wouldn’t think that cleaning products could cause such big issues. You may be thinking that of course some products particularly those containing bleach will set my asthma off and why am I making a whole blog post dedicated to cleaning products. Well for me other than the strong chemicals posing a risk to my asthma most cleaning products also contain salicylic acid which I am very allergic to.

At home it is ok and I can avoid things that pose a risk by just not using them and finding alternatives. I am in control of what is and what is not used to clean my flat (whether I am doing it or my Mum) so I can eliminate as many risks as possible. However out with my safe haven of home, there are cleaning products everywhere- work, restaurants shops, hospitals etc. I do not know what is being used or what has been used on the objects I touch however with this new evidence suggesting that there is not always a need for chemical products, there is some hope that places may adopt this and change their cleaning regime to water and microfibre clothes.

For those who are not allergic and don’t have difficulties with their breathing must think what am I going on about and why am I making a big deal. Well cleaning products have been life threatening. Once I was not aware that my nebuliser mask had been cleaned by a member of staff on the ward when I had been admitted to hospital. They thought they were being helpful and even the staff member admitted she had assumed you cant be that allergic to even mild cleaning products and she thought it was mainly food stuffs. The result of the clean nebuliser mask was this:

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This photo I took after I had been given oral and IV anti histamine, IV steroids, a number of back to back nebulisers and about 4 hours after the initial reaction. You can clearly see were the nebuliser was on my face and where I have reacted to whatever it was cleaned with and the residual cleaning product left behind.

In hospitals it becomes even trickier to try and avoid cleaning products and many of them seem very toxic given some of the bugs they need to kill to prevent the spread of infection and increasing the number of people having to stay in hospital longer because they have not been able to recover from their initial illness due to developing another illness from exposure to bacteria. I would never expect the NHS or hospitals to change their cleaning regimes as the infection control teams will have assessed the best possible way to ensure the wards are kept clean and safe. Having said that the products used to achieve this do pose a really big threat to me and have resulted as fair few times in me staying longer in hospital due to having an allergic reaction to some sort of cleaning product being used. It has once been such a bad reaction when I was in hospital that I had to be moved to the critical care unit to be stabilised.

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Above is the remains of an allergic reaction. I think this was a good 8-9 hours after the reaction. I was in hospital due to a chest infection which had my asthma worse. I had narrowly avoided going to critical care when I was admitted but did have to be in a monitored bed and attached to all the machines. This meant I wasn’t allowed up to the toilet and had to use a commode- which I used but when I stood back up to get back into bed I felt awful. My skin was burning, itchier than hundreds of midge bites, my heart rate jumped up to 180 ish and breathing was very difficult. Thankfully the respiratory team had just arrived to review me anyway when I had this reaction. The Dr’s were looking at the monitor as my heart was going mad, and my oxygen saturations dropping but the respiratory nurse specialist who was also with them was talking to me from the end of the bed. She said she could just see the bright red rash spread before her eyes and soon I was scarlet all over with parts of it blotchy. Again I was given everything to treat it and quickly moved to the critical care unit. It turned out the commode I had used was cleaned with some other product rather than the normal one so the contact of it on my skin was enough to spark a reaction.

There have been other situation where cleaning products have caused a reaction for example my youngest brother gave me a hug once but the washing powder he used I met have been sensitive to as where bare skin touched his jumper I had a blotchy reaction which looked very bizarre- almost like a golfers tan except the tan was red inflamed irritated skin and not a nice bronze colour.

From this you can see that for me cleaning products pose a huge risk but not predominantly from an asthma point of view but an allergy side. Of course the allergic reaction in turn sets my asthma off due to the irritation to my airways from the chemical etc etc. It would be fantastic if more studies were done which further proved that chemical based cleaning products are not required and water with a micro fibre cloth is just as good.

This would make the risks to many not just myself but other who have allergies or asthma which is triggered by strong smells from cleaning products or the chemicals themselves much less and mean that we are able to preserve our lung function and lung health by not exposing them to harmful triggers. Until the time comes and chemical based products which cause me harm are less widely available I have my own way to try and protect myself. I have a vogmask which many other brittle asthmatics, ILD or CF patients recommended to me. This mask has a filter to can protect me from inhaling the chemicals which could cause a reaction. This won’t eliminate all the risk as there is still the risk from contact. This is the vogmask which can be bought online. I do feel pretty self conscious in it just now if I wear it in public but I am sure as I get used to it and reap the benefits from it then I won’t notice it so much.

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How it all went wrong

This photo reminded me that it was this time of year where everything was turned upside down, inside out and generally mixed up to the point where life has really never been the same again.

13 years ago around this time of year too my breathing, lungs and asthma all changed for the worse and have never recovered. What started off as a dream year living in Canada, ski instructing ended up nothing like I could ever imagined.

Some of it is a blur but essentially I developed an atypical pneumonia which at first I didnt feel to bad with but it soon changed and very quickly I felt really unwell. We were on a trip to Banff when I first got ill and on the bus back to Fernie I had an asthma attack and I had to hospital. This was were the chest X-ray showed the infection and had very uniform Y shapes on it. This is apparently typical in the infection I had. I recovered from the attack and started on antibiotics but didnt feel much better.

It was only about 4 days after when everything went totally downhill. I felt awful, and I was finding breathing such hard work. I was taken to the local hospital in Fernie where they tried to get on top of things for me but they couldn’t. I don’t clearly remember much after that but I do know I was packed into a warmed sleeping bag type thing and was flown across the mountains by helicopter to the Peter Lougheed Hospital in Calgary. I reckon the helicopter ride would have been awesome had it not been such bad circumstances.

My stay in the hospital in Calgary I don’t really remember. The main thing I do remember was the nurses and Drs calling my dad while I was in resus room and his voice coming over on the speaker so it was like surround sound when he spoke. My poor dad had to go shopping for clothes for me as I didnt have anything other than the clothes on my back. The rest of them were still in my room in Fernie. It took a wee while before I was better and able to fly home marking the end of my time in Canada.

Arriving home I thought I would just need a week or so to recover and I would be all good but no. My asthma control and breathing has never been the same. Since then it has been a never ending cycle of hospital admissions, attacks, different medications and trying anything to get control again.

I often wonder the what if’s. What if I didnt take a year and go to Canada before I started university, would none of this happen and my breathing would have remained as it was. What if I went to a different country to ski. What if I hadn’t got ill what would I be doing with my life now. I do wonder and will sometimes regret the choice I made to go out to Canada but then it could have easily happened anywhere I was. Even at home.

I do long to be able to play sport again, go to the gym, go on holiday without having the worry that this might cause an attack which may result in not only hospital but also intensive care. Its not just the hobbies I long to be able to do. Not being able to play sport etc is something that comes to everyone in time for me it has just happened a bit earlier but the one thing I find so hard to deal with is not being able to work full time, and not even able to do that job properly because of it all.

The main point of this post is that I cant believe that it has been so long since everything changed but in that time nothing has changed or improved. Life has adapted to accommodate my breathing and asthma but it hasn’t got any better in fact it feels like it has just been harder. With each attack it takes longer to get back on my feet and harder.

I really do hate what it has done and days when my asthma is more of an issue it makes everything more prominent and highlights everything it has taken away or prevented me doing. Having said that there have been great moments and experiences because of the asthma.

With each attack getting worse and almost always ending up in ICU or HDU mentally it is harder to deal with. I have never had flashbacks really but recently parts of what happened in Canada has come to the fore and it wasn’t the best experience. Despite not recalling much of it, it still terrifies me and comes to the fore front of my thoughts when Im in hospital. Thankfully during an attack I don’t get the flashbacks of Canada but just having an attack is terrifying enough that I’m pretty sure if I did get them it would be way too much to cope with.

13 years on and I am determined to keep trying my best to live life to the fullest and do what I can when I can and not think that attacks, hospital admissions are the end of everything but discharge is another battle won.

NHS Lothian Nurses and Midwives Research Open Day!!

#RaiseYourGame

I started writing this yesterday hence the beginning part is my preparation for today!!!

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Tomorrow I am really fortunate and grateful to have the opportunity to speak at the NHS Lothian Nurses and Midwives Research Open Day in conjunction with Edinburgh University and Queen Margaret University. Unlike the last NHS Research event I spoke at I am excited about this one. Last time I was full of nerves as this was the first time my professional life as a nurse was crossing with my patient voice which I was unsure of and how it would be. I was wrong to be nervous as it was a fantastic day and I really enjoyed it. So I am looking forward to this one even more. It would be great to have more time to speak but I am hoping that we intrigue enough of those attending that they come over and speak to us and find out more.

Thinking about what I am going to say is really hard because there is not much time and Patient and Public Involvement is an area I now love and any opportunity I have to get involved in research I take it up. I cant believe that just 7 years ago I failed my essay for Research Methods when doing my Nursing degree. I was furious and did not think I should have failed in. In fact I resubmitted the exact same essay with no changes whatsoever and passed. Had the same person who marked my resubmitted essay marked my first submission then I would not have had a fail. It was a huge risk but I knew that I didnt deserve a fail and knew I would still be in line for a distinction even with resubmitting it. It was a huge gamble and a huge risk and I may have been arrogant or full of myself but I knew it didnt deserve a fail.

So now I am a qualified nurse. I am not a research nurse but a nurse who loves research and the best part for me is being involved in so many different research ideas, projects rather than doing one main project and only focusing on it.

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I had a fantastic day today listening to everyone’s stories about how their careers evolved and they came to be a research nurse. There were so many different stories about how they became involved in research and the route they took. The passion everyone spoke with about the various specialities they were in was great to see. I don’t think there is any area where there is no research taking place. Every area is covered and in Scotland particularly Edinburgh we are benefited by having Clinical Research Facilities in adult, children and mental health rather than one umbrella centre.

It was also fantastic to hear about how many have used patients and public involvement. Not all of them but its a start that even some of them have been doing PPI as a lot of researchers do tend to shun it if they can or even worse they use it because it is a tick box exercise.

It is so rewarding talking at these events with Allison. I have done quite  a few now and think I am getting more confident in what I am speaking about and don’t think I go quite as red as I used to! I think for me the best thing is being able to share what I have been able to do in research and help researchers understand what it is like to live with conditions and have so little control of my life due to medications, and triggers coming at me when I don’t expect it.

My highlight from the day though was hearing one of the critical care research nurses say that to her doing research was making a positive out of a negative situation and trying to better the lives of patients. For me I use this statement a lot. I love doing PPI and as I have said a lot in this blog that PPI and research has really turned a negative situation into a positive one and continues to do so. I love being involved and there hasn’t been anything I don’t like doing. I hope when I speak that I portray how passionate I am about patient and public involvement and how important it is to getting the best research done and research which is really going to benefit the patients the research is targeted for. If I could do PPI full time I think I would however I love nursing so for now I will stick with nursing!

AUKCAR Annual Scientific Meeting

Last week I travelled to Bristol for the Asthma UK Centre for Applied Research annual scientific meeting. I really enjoy these meetings as it is an opportunity to meet other members of the patient and public involvement (PPI) group which I do enjoy. With PPI you do a lot of things fro the comfort of your own home and only on the odd occasion do you get the chance do have face to face meetings so it is great to be able to meet others and share experiences and what projects we have been part of. I am fortunate that living in Edinburgh and being part of the centre management committee I get to attend quite a few face to face to face meetings so know who people are more than others in the PPI group do.

This years meeting was focused around what impact that the research the centre has been doing has had on those with asthma. As we are coming near to the end of the 5 years funding it is great to see what has come out from the centre. There has been a huge amount of growth in the centre with a large number of new PhD students starting and more Universities who are affiliated with the centre as well as more researchers to. Seeing this growth instills a sense of hope because for so long there has not really been a huge amount of change in the management of asthma. In fact it was recently in the press that many people in the UK with asthma do not receive the basic asthma care as recommend in the guidelines for the management of asthma. In fact even I don’t have the correct recommendations in place. The three main ones are: a yearly inhaler technique review, a written asthma action plan and a yearly asthma review. I do have the yearly (often more than yearly mote like monthly or weekly at some points) review but I do not have a personal action plan despite asking my consultant for one on several occasions. I have also not had my inhaler technique reviewed- I have had the odd pointer from one of the asthma nurses at the Sick Kids!!! It must be really hard for those who are not as assertive about their asthma or unsure about asthma to have the confidence to ask to have these recommendations put in place. I feel like I am asking a brick wall often.

The PPI group were really lucky to have a slot in the ASM to speak and present to all those present at the meeting. I was able to update on what has been happening in SPEAK Asthma (the children and young persons group within AUKCAR) and the opportunities we have had as a group. The highlight for me being that one boy chose to come to a SPEAK Asthma group session rather than meet the All Blacks rugby team- I know which one I would have preferred!!!

It is a really tiring meeting as it is early starts and late nights but I really love going to them and it is so worth it. Being able to be part of such a fantastic community of researchers who are dedicating their lives to improving the lives of people with asthma. The particular part which I can never get over is how we as PPI members are considered as colleagues or equals to all the researchers and members of the centre rather than being a meer patient who is there for a tick box exercise rather than being a valued member of the team. I never feel shy to express my opinion or ask questions when at these meetings.

A particular highlight from this meeting was seeing how the PhD students who started their PhD’s at the outset of the centre have progressed and some have even submitted their thesis and only have their final interview to go. Seeing the growth and confidence in them is so rewarding and how passionate they are about asthma but also the impact that the PPI group has had. They are all so grateful for the help they received from the PPI group.

This year we had two awards for excellence in patient and public involvement which were awarded to 2 PhD students who I have had the pleasure of working very closely with so seeing them be rewarded for their efforts is fantastic. They both really understand what PPI is and the value of it to research.

There has been a lot of learning to take away from this meeting and tasks I want to do to try and expand the PPI group and give other people with asthma the same opportunities I have had.

The impact that research has really does make a difference. This was the focus of the meeting but I looked at impact from a different point of view. The majority of the people at the meeting would be I think looking at impact from how it has changed statistics of asthma, or influenced policy, of helped make a clearer framework for diagnosing asthma. For this impact to be made from research can often take many years. They say it approximately takes 9 years from research being completed to policy being changed. But for me the impact is much more and has happened a lot quicker. The impact is that it has given me hope. The more involved I am and the more research I am able to help with the greater positivity I get about having this horrible disease. For me there has not been a huge improvement if any in my asthma but I feel more positive about having asthma and know that there are so many people working so hard to try and improve life for those with asthma. I think for me the key thing and I cant say it enough is that you can do PPI whenever you want and wherever. One of the AUKCAR members said that they were awake at 3 in the morning and saw my email come in. I often do some PPI stuff if I cant sleep, or when I am in hospital. It does not have to be done in a university or meeting room.

It is exciting to see what research will come from the centre in the future and I hope we do get funded for another 5 years so there is chances of real change in asthma care and asthma stats do improve.

Recovery

With each hospital admission and each trip to critical care it is taking more mental strength than ever to get back to base line. I think with this past december and a few traumatic things happening including the death of my granny and also the death of a friend who suffered from brittle asthma too died in her sleep very suddenly and unexpectedly. Having brittle asthma does put you at a higher risk of having a fatal asthma attack. The attack I had just recently which put me in the high dependancy unit was described as being not quite as life threatening as my previous attack was. The consultant who said this does know me and was trying to make me feel better as I was feeling pretty down about being not just in hospital but in the high dependancy unit for new year. As the nurse said it could have been like 2 years ago when I was in ICU and didnt realise it was New Year until the 3rd of January so I guess this one wasn’t quite as bad.

The comments of the Dr have really stuck with me more so than normal and I think it is because with each attack I get over it is taking longer to recover, and I do feel that with each time there is that little bit more freedom taken away wether it be through medications, ability, work, travel. It may have been meant as a positive but with knowing so many people now who have died of asthma and not just any asthma but the same type of asthma I have is really scary. What scares me more is the relationship I now have with my consultant who despite me writing, emailing, calling has not addressed any of my concerns. Even on previous discharge letters there was requests for a plan to be put in place, follow up with immunology because of the allergic reactions I have been having and various other things. For me it is embarrassing when I am asked by other consultants who see me acutely and ask why nothin has changed and I have to say because my consultant doesn’t think anything needs changed. I am so fortunate that I have fantastic friends who have helped me a lot with my asthma, but also my own knowledge of asthma (but dealing with your own condition is a bit different from text books) and the support of my GP surgery and asthma nurse there who are happy to support me until the time comes and I find a team who can manage my asthma and allergies well. Part of me wants to move back to Southampton and see my old consultant who would drive up from the Southampton hospital and see me in Winchester hospital and thats not something that happens often and at the time I didnt realise the significance of it but now I do and am eternally grateful for his support. I am hoping that perhaps they may agree to see me but will just need to wait and see. Sometimes as a patient we are the best judge of how we feel and what our bodies need to function so for now I am going to need to listen to my body drop my steroids or up them as I need and get myself through until I can get a better idea of what is going on. The only benefit just now of being on high dose steroids is that I am not having nearly as many allergic reactions as I was having!!!

I am really looking forward to getting back to work. Getting back to normality and back to doing what I enjoy. Its odd I am looking forward to the feeling of being tired because I have been busy at work rather than exhausted because all I did was breathe and not do much with my day.

There are good things happening though there is the AUKCAR Annual Scientific Meeting in Bristol, SPEAK Asthma things, then a Research Nurse open day which I am attending, along with various other things with Astra Zeneca. So there are lots of positive things to look forward to.

Scared of running out of energy.

This is how 2018 started for me:

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(Yes they are TED stockings to prevent DVT’s and yes I do know I don’t have them on properly but I was so hot and bothered that I couldn’t stand them up properly. I even agreed to wear a gown which I never wear if I can get away with it!!)

After a fairly tricky December with various things going on the adrenaline ran out and the day after my Granny’s funeral I just felt awful. I didnt think it was anything that bad so spent the day in bed, but by the next day I struggled to walk to my kitchen from my bedroom which is 8m away. I got myself back to bed and get horrendous. My heart rate was up at 170-180 and I new I wasn’t going to be able to sort this out at home. It was a trip over to the Royal Infirmary where I got to welcome in the New Year in A&E fighting for breathe and waiting to be stable enough to get transferred to the high dependancy unit.

The experience in A&E was really positive other than a small scare with actichlor in the resus room but we managed to avoid anything major happening and there was no reaction as the actichlor use was halted!!! (in a previous admission I had a very bad reaction to actichlor cleaning stuff and ended in critical care as a result). The nurses and Dr’s were so caring and listened to me. It was a consultant on who has looked after me before and knows my reluctance to go to critical care unless I absolutely have to, and was understanding about the issues with getting blood gases, even peripheral access and bloods let alone arterial blood. Having someone take a lead who works with the patient makes the experience a lot easier and explaining why they were doing what and what they expect from it. I could tell fairly quickly after the first lot of IV magnesium and back to back nebulisers that this wasn’t going to correct itself that quickly and I knew that the A&E staff would be talking to critical care and I would be reviewed by them.

I could hold my own and despite starting to feel tired (when I say tired I don’t mean that I could do with a nap but the physical exhaustion of not being able to keep breathing) but was moved to critical care unit to be treated where I stayed for a couple of days. I hate being there- not that it is ever fun to be there but its the thought that you are there so if anything happens they can act on it quickly, you have the potential to get worse but at the same time being there is a comfort as you know you are safe and if something was to happen then you would be caught quickly not get too bad. This bit was all ok and I felt safe and in safe hands. It all changed however when I was moved to the respiratory ward.

The first night in the respiratory ward I felt ok. I was in safe hands, I could control my environment, I could control what I was exposed to and what my body needed this was because I was in a side room. It never lasts long staying in a side room especially with the huge number of flu cases coming into the hospital. So naturally the next day I was moved into a 4 bedded room to allow for flu isolation. When the change nurse told me I was being moved I said I understand why I need to be moved however there is a risk to my own health with being moved as last time on this ward when I was moved into a 4 bedded room I was exposed to triggers by another patients relatives and ended up in intensive care and once back out of intensive care I was reviewed several times by the ITU drs due to further exposures. Naturally I was apprehensive about this happening again and did say to the charge nurse about this and asked that there could be more awareness about who enters the room and limit the products used. I wish now in hindsight that I had stuck to my guns and refused to move because of course the charge nurse did not pass the message on- my opinion is that she thought I was just being fussy because I was being moved out.

Anyway I was moved- a patients visitor who also had children running round the room, people stinking of smoke and about 6 people around her bed meant my chest got worse. Not the children running around but the relatives with the smoke. This is the point at which I got scared. I was already exhausted and getting up to the bathroom was hard work but I was managing it and able to pace myself because I could control this. I could not control the visitors who selfishly didnt think that coming into a respiratory ward might be a good idea to not smoke before coming in incase they cause a problem for other patients. I am lucky in that I can do my own treatments so did some treatments and decided I needed to get out the room and keep myself safe. That didn’t go to plan and I was caught by a nurse on my way out the room and was told I was too wheezy and unwell to be walking around the ward. I tried to explain that I didn’t want to be in the room but I was told I needed to be on my bed and have some nebs. I was given a surgical mask to try and help protect me from the irritants but not sure how effective that would be.

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This was the point I was terrified. I felt like I was being locked into a cage and exposed to my worst fears. I had no way out and no way to protect myself. My other fear was that last time I got so tired and was so exhausted I just didnt think I could keep fighting to breathe. Last time I was in a better position when I went down hill and had had more rest in the run up to the downfall but this time I was only just out of critical care and really didnt know where I would find the energy from to fight this one and with the trigger still present.

I didnt want to be a pain in the neck and tried to explain this to the nurses through wheezing and gasping for breath every few words. Thankfully the other charge nurse came to speak to me and was understanding to my fears and he got the Dr’s as I wanted to get home to be in my own environment where I could control pretty much everything and as all my access had failed they wouldn’t be doing any IV treatment so I was on nebulisers and felt I would be safer at home. He stayed with me while the Dr’s were there and they explained because I was not even 24 hours out of critical care that I really couldn’t go home and be safe because of how quickly my chest goes off. I understood that and did say that I wouldn’t go against they advise and wouldn’t be signing me out but I wanted them to understand my fear as I was just so tired I really didnt think I had the energy for another fight to get on top of my breathing.

It is so scary when you just don’t think you can continue doing something. It is a fear you cannot explain to anyone. It is a terrifying. You can do nothing to get away from it, and nothing you can do can make it better until the medication works. You don’t know how quickly the medication will work and how much it will help as each time is different- some attacks respond very quickly to treatment and other times it doesn’t.

Thankfully things were ok and I did get on top of things and seeing a registrar I know and who knows my chest he listened to me and thankfully despite the drop in peak flow and need for a few more nebulisers than normal over night I was allowed to get home as they felt it was safer for me to be at home where I can control my environment and control what I am doing and prevent myself being exposed to things which may cause my chest to get bad. I have clinic on Monday with my consultant so will be able to have chest sounded then and check everything is ok.

This admission has again thrown up thoughts to me about going to hospital- risks vs benefits which in some ways scares me that I have these thoughts because I know as a nurse and also as a life long asthmatic you don’t take a gamble about not going to hospital. You go to hospital if you need it- asthma won’t take your feelings into consideration and think it will just lay low because you dont have the energy to fight the attack or you have plans in the diary. I hate that I think at times when in hospital that I wish I had never come in because the experience has been so awful. The first 2 stages of being in hospital which by all means should be the worse (in resus and critical care) are actually the easier to deal with despite the stabs with needles, the fight for breathe, the fear, the inability to do anything for yourself compared with when on a ward and you can breathe a little easier, don’t get stabbed for blood or access lots and can get yourself comfy etc. Its the wrong way round and there needs to be ways of changing that and making it easier. Visitors need educated on how to be when they visit hospital- visitors know not to come to hospital when they have colds, nausea/ vomiting or diarrhoea that they shouldn’t come to visit people because of the risk they pose to patients but they think that smoke isn’t a danger which to many smoke is even more of a danger than sickness.

The start of the year has defiantly not been the one I had planned but it can only go up from here and hopefully this small blip is just that and is a wee blip and I can get back to work and doing everything soon.