Reiki

For so long I have been battling my asthma and health. I have managed it mainly with what I would call traditional western medicine and have never explored the idea of alternative medicine mainly because my Drs or nurses have never suggested it and the one time that I did suggest trying something it was shot down and told not to waste my money.

However I now feel that I really have nothing to lose. I am on so much medication now that I am not sure that there is much more I can try or that my Dr is willing to give a go (I want to try terbutaline again but my Dr is set against it) so I feel that it has been left to me if I want a change as nothing is changing otherwise. A friend of mine who is also an asthma nurse specialist suggested trying Reiki. I have never even thought about trying it or even how it could possibly help but I have the thinking that it won’t do me any harm so why not try it. I eventually made the appointment and went for my first reiki session.

I had no idea what to expect from my session. I did a little reading about it but wasn’t sure how it would work, how I would feel and what it would do to me. The session was a bizarre experience but bizarre in a good way. The lady doing the reiki explained to me about what would happen, what she would do things I might feel, how long it would last etc. I was a little apprehensive as I needed to lie down but was propped up with pillows. Im not the best at lying down and I find it hard to relax sometimes but for some reason I felt ok and didn’t mind lying down as I was cocooned in blankets and felt very comfortable. At first I sort of wondered what was happening but there was a calm about the room and I didnt need to think or worry or anything really.

During the session there were some times when it felt very strange. Part of me felt freezing cold for a short time during it and equally my knees down to ankles felt like they were on fire for a bit. I hadn’t told the lady much. She knew about my chest but that was it. After the session which was about 45 minutes we had a chat about what she felt and what I felt. One comment she made was that she felt a lot around my knees and lower legs and could have been at them for a long time. Now bearing in mind I had not said anything about my legs, I don’t have a limp or anything to give away that I might have a problem so when she made that comment I was taken a back as one of the main things I thought the reiki might help with is my restless legs as it drives me bonkers. I will get up in the middle of the night and go for a drive because they get so bad. I have also had my knee operated on and have problems with the other one too so when she picked up on my legs I was shocked. I wasn’t sure why I was shocked. I think it was a mix of not knowing how much reiki would do and maybe underestimating what can be done.

After the session I felt so relaxed. I am not sure why but I did and was able to enjoy the rest of the day relaxing and properly relax. I am going to go back for another session and I hope a few more as I cant see or feel any negative effects from it.

I will see how it goes. Even if it doesn’t make my asthma better it is at least helping me relax. I might look at other things to try as there is no harm in trying.

Bad weather makes smoking worse

The recent bad weather across the country has hit everyone hard. No one has been immune from it but for me it hit me in a different way.

Since the supposed smoking ban came into force across NHS sites in Scotland I have found it near on impossible to get into the hospital and then out of the hospital without at the end of the day without being exposed to smoke or people smoking.

I felt pretty angry after my second long day of working where I was working a longer hours to help out so was already feeling it and not feeling the best but as soon as I stepped out the lift it was like being hit by a cloud of smoke. I hadn’t even got out the building at that point and already I could feel my lungs tighten up. To make matters worse of the 2 sets of double doors only one was working so couldn’t even avoid the smokers and they were all gathered right outside the door way and you had to shuffle/ take a big gulp of air and run to make your way past them. They were oblivious to the impact they were creating and the negative effect it was having on people.

I do harp on about smoking but it bugs me even more when my lungs are more twitchy and vulnerable than usual and then to get an added trigger which I couldn’t avoid unless I decided to camp out in the hospital, there was nothing much I could do. Sometimes I wish they could know what it is like to struggle to breathe, to be gasping and not able to get any air in or out and really fight for life being surrounded by Drs saying words like intubation, ketamine, intensive care, blood gas, acidotic etc. Part of me wouldn’t mind the smoke if it was me doing it. I seem to be able to rationalise my asthma more and accept attack more if it is something I had done wrong. For example if I for some reason thought it was a good idea to smoke a cigarette then I would only have myself to blame for making my asthma worse and causing me a problem but when I have done everything I can to keep myself well, prevent getting attacks and then something I cant control but other people can control I find it really hard to be ok with the effect it has had on me.

I keep thinking and coming up with ideas on how to get around the smoking issue. I often think as I am driving to work in my car that today will be the day I get up the courage and ask people to not smoke by the doors as it can cause a lot of issues for people but then I get nearer the door once parked and all I can think about is getting inside as quickly as possible breathing in the least amount possible!!

I wish I was creative as would try to find some sort of device or something that would extinguish peoples cigarettes if they are smoking in the wrong place.

I do understand that those who smoke probably have no idea the problems they are causing people and to them they have the craving so need to cigarettes and don’t want to get wet or be out in the cold but not everyone wants to be exposed to smoke even those who don’t smoke and don’t have a health condition that has a negative effect when they are confronted with it.

The only thing we can do is hope, keep tweeting about the smoking ban and the lack of enforcement for it and maybe just one day things might change as a result.

Fingers crossed!!!

Snow week: lessons learnt

This past week the UK has been hit with some awful weather. In the whole scheme of things around the world the weather was not too bad compared to the likes of Canada but the snow fall was enough to bring the transport system to its knees, shops ran out of food, no milk could be found anywhere. The entire country was suffering. Mainly the suffering came because as a country we are ill equipped to deal with any snow other than a light dusting.

Schools were shut, offices were shut as well, public transport couldn’t run. If you had any vehicle other than a 4×4 you would struggle to make even the shortest of journeys. The news bulletins spoke about the red warning where only essential travel should be done and if possible everyone should stay at home. This is all very well if you have an office job, or work in a shop. When you work in an essential service like the police, fire service, ambulance service or in the hospital there is no snow day for you. Health doesn’t get better or standstill and wait for the weather to get better so people can get into work and get their job done.

As I work as a nurse we don’t automatically get to stay home because the hospital never shuts, healthcare continues. I was fortunate that I have a 4×4 so I could move around the city with relative ease however I heard fo colleagues taking 3 hours to get to work as they had to walk the 8km to get in while dealing with blizzard conditions. I could only commend those who put such effort in. I could do my bit and take the night shift from the renal ward home and pick up some people who were stranded on their way to the hospital. It was a great sense of team work and really what the NHS is about. As I walked through the ward there were Dr’s taking beds helping with washes, consultants taking bloods and everyone just mucking in to help. Some nurses were staying in the hospital over night to ensure they could work the next day. I have utmost respect for those who did that.

For me my role in the snow was returning to a role I loved. In our department we have a certain number of patients we have to see everyday and set their dialysis machines up at home. Since my breathing has got worse I have been hospital based and not been able to visit patients at home but for 2 days last week we had to use my car to get to patients as the pool cars which are Vauxhall Corsa’s didnt stand a chance in the snow, so for me to drive and allow the nurses to get the machines set up was a no brainer. I was able to pop in and say Hi to some of the patients who I haven’t seen in ages which was really nice.

I have mixed feelings now about the snow melting. When it was really snowy my asthma was a little better as the air felt so much clearer and fresh. That damp feeling had gone but as the weather improves the damp feeling has returned and breathing is not as great.  I m also glad that the snow is melting because I was having to do a lot more hours than I had previously been doing. I was essentially working 8-4/5 rather than 9-3:15. At the time I didnt feel like it was  a struggle however this weekend has been a right off. I have felt exhausted. My chest has been bothering me. I haven’t been able to sleep because of my chest and I really do think it is a mix of doing a lot more at work and the change in weather. I need to remember this feeling and ensure I don’t forget why I am only working shorter hours than I had previously. Part of me always wondered if I would be able to work longer hours but this has confirmed that I really cant. I wouldn’t change what I did at all but it is something to take note of.

Leaving from work on Friday late afternoon nearly caused me a huge problem and I was so thankful that I have a portable nebuliser which I could use. I do go on about smoking and the effects of people smoking has on my chest but the snow days have been even worse and made it very dangerous for me essentially leaving me questioning why I continue to try and keep working when just getting into or leaving work can pose such a risk (but that is for another post).

Fingers crossed this week everything will return to normal, public transport will be back up and running and the snow will melt away without causing huge floods around the city and country.

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!