Getting it right for a newly diagnosed asthmatic.

Having a conversation with a friend this evening and I was so shocked to hear about her recent experience being diagnosed with asthma. A prolonged cough, wheezing and breathlessness the GP was unable to get on top of things so she was referred on to the hospital to see what was going on. Lung function was not too bad but a very high exhaled nitric oxide test resulted in a diagnosis of asthma.

My first thought was that it was good as she had been started on a preventer and reliever. I didn’t think to ask anymore questions really. She was finding her chest much easier after using the preventer for a few weeks and had very little need for her reliever.

I had made the assumption that once diagnosed she would be given asthma education, told about what signs and symptoms to look out for, what to do should you feel unwell and above all be shown how to take the inhalers both of which are meter dose inhalers (MDI) or the skoosh down inhaler that most people will think of when they think inhaler.

Anyway tonight after a quick question I discovered how badly the diagnosis and management was done. I realised that no asthma education was done, no inhaler technique and she had to ask for a spacer to use her inhaler with as one was not prescribed in the first place. I was horrified that she had not been shown how to take the inhaler. It is an MDI notoriously the most difficult inhaler to get the correct technique and the correct dose into the lungs!

It is so shocking that still new people are being diagnosed with asthma and not given the correct education or support. I am more than happy for friends and anyone really to ask me questions about asthma but surely it should be the asthma nurses or GP’s that give this information when diagnosing. Asthma is in the press enough just now as the asthma death statistics in the UK seem to be getting worse not better and it is among the mild to moderate asthmatics who are dying and most likely due to one of a few factors:

  1. poor inhaler technique
  2. not regularly taking there inhaler as prescribed
  3. not knowing the signs to look out for and take action when asthma control is deteriorating.

I keep going that the research being done will soon filter down into actual practice and asthma management will change. Time spent at the start can help reduce work load in the long run.

Asthma UK has a variety of different documents that can be downloaded to help asthma management and there is no charge so really there is no excuse for people with asthma to not be given the asthma action plan personalised to their needs.

Basic asthma care is essential is we want to achieve the aim of zero tolerance to asthma attacks.

 

Asthma Death in Children

There is so much research into asthma just now looking at a cure for asthma, better management, getting asthmatics to comply with treatment better but research into asthma death, often a taboo subject to talk about is vital to make any change in the shocking asthma statistics.

Ann an children’s asthma nurse specialist is also one of the PhD students at the Asthma UK Centre for Applied Research. Her PhD is looking to speak to parents of children who have died from asthma.

The importance of this I think is two fold.

Initially the whole concept of this PhD came from one of the Patient and Public Involvement Leads at AUKCAR whose own daughter died from asthma. Having a PPI member come up with the research idea and the centre then backing it really highlights just how much AUKCAR values the patient and public group by implementing project ideas that come from them.

Secondly this PhD is so vital. Only a few months back it was revealed that across Europe, the UK has the worst rate of asthma deaths and a rate that we all hoped would improve after the National Review of Asthma Death (NRAD) was published in 2014. However this is not the case.

In the UK death is very much a taboo subject. People don’t like using the term death or died. You see the term passed away or lost- you don’t lose someone if they die because if you go looking you won’t find them again. Asthma death is just that and I know people who have had family members die from asthma also do not like the term lost.

For the first time research is being undertaken by an asthma nurse specialist who deals with a number of people with severe and life threatening asthma. Rather than speaking to medical staff, Dr’s and nurses Ann is going to be speaking with those directly affected by asthma death. Ann wants to speak to parents or carers whose child has died as a result of asthma. Speaking to you will mean we can learn from your experience and make a change for the future.

Have you been affected by asthma death in the last 10 years (in or after 2008)? Has your child died between he age of 5-24 and you were there with them. Would you like to speak to Ann and help make a change for the future?

All you need to do is email Ann: ann.mcmurray@ed.ac.uk or by phone/ text on 07976582297. You will have a single face to face chat with Ann in a place that you are comfortable which will last no longer than 2 hours.

The study has been reviewed by the West of Scotland Research Ethics Committee 3 (WoSREC3) and Patient Public Involvement volunteers of the Asthma UK Centre for Applied Research (AUKCAR).

 

Critical Care does PPI

Tuesday evening I had a fantastic time. It was the first meeting for the Critical Care Patient and Public Involvement Group in Edinburgh.

Patient and Public Involvement (PPI) in Scotland is no where near as organised as it is in England and funding is woeful, so to establish and run a group is a huge undertaking but for us as patients it makes a huge difference. We see the dedication of the organisers to make life better for those in the PPI group.

I have been really privileged with this group as I have been able to help advise the group organiser and how to do it and was invited to speak alongside Allison who I do a lot of talks with for the first meeting. Having been involved in the set up of the SPEAK Asthma group, it was good to be able to advise on this one and work with the group lead.

It was great for the initial meeting to have a combination of patients, clinicians, researchers, advisors all chatting about involvement and research. What I did find is how difficult it is to define and explain PPI to patients but also researchers. It was clear some researchers thought PPI was more about patient recruitment than involvement but also that they have their clear idea of their research and how it is going to be done which is good however if this is their thinking then PPI is not going to work especially if the patients do not think the method of research is going to be beneficial. The key thing with involving patients in the research process is listening. You must listen to the patients and their views. You may not agree with what they say and think because you have research under your belt then you have the expertise but it is patients you nee to recruit so if those you use for PPI don’t think it is a good design then you can be pretty sure that your participants won’t be interested either.

However not all the researches were like this and some of their research has been really well thought out and they explained it in a manner that everyone could understand and get a real feel for the project. It is a real skill to be able to translate from academic speak to everyday speak so those who can they have the art!!!!

Having a unit like Critical Care want to set up a PPI group is really positive. Medicine is advancing so much and improving patient care and treatments. Patients in critical care are pretty unwell so often hard to speak to them about research and get them involved because when your there you are not in the best of health and research is the last thing on your mind. It was clear at the first group meeting though that the patients really valued the expertise in critical care and by them getting involved in PPI is them giving something back to the unit that looked after them.

The tricky thing is reaching out to those patients once they leave critical care or the hospital as even once out critical care and on a ward they may still not be feeling great so would not want to be given loads and loads of information as they are still processing what has just happened. If anyone reading this has ideas of how to gain more people for the PPI group (ideally in Edinburgh) please leave me a comment.

The exciting part is that there was such a positive response and watching everyone interact was great. A first meeting for anything is hard and you never know what to expect so for the organisers it has been a success I would say. It is sad though that they have had to put so much work in and I am sure many many hours of unpaid time to set up and organise such a group and event that it is not always possible for areas to do that or have the staff dedicated to setting up, running, facilitate and maintain a group.

The benefit is though that if the group can be advertised and grow then others might set groups up for their research areas having seen the positive impact PPI has had for others. The more groups then hopefully the more publicity and PPI may have more of an agenda in Scotland and research groups which would perhaps result in more funding and PPI groups can have a network across the whole of Scotland and all types of research can get enhanced by PPI and not just be a tick box exercise!!!

NHS Research Scotland Away day!

Gosh! Im getting used to being the only patient speaking at research events!!!

IMG_3754

Today NHS Research Scotland (NRS) held an away day in Edinburgh with a variety of researchers, research managers, R&D, members of the CSO and various others. There was also me- not a researcher, research manager or in any of the other positions that other attendees held. I was there as a patient and to give my perspective of patient and public involvement (PPI) and how it has impacted me.

As I present more and more and to larger audiences I find I am more at ease speaking at the lectern in front of a room full of people. What I have realised is that I can articulate the importance of PPI and how passionate I am about it. My passion for PPI comes from the experience I have had being involved in research and how it has changed my life. Not wanting to overuse a statement but it is I guess my catchphrase to sum up how I feel about PPI…

“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 uncontrolled asthma…PPI and research has really turned a negative situation into a positive one”

I feel so fortunate to be able to speak about the variety of different opportunities I have had as a result of PPI. Every piece of research is different so PPI activities that go with the research are going to be different but the aim is the same. It is about helping the researchers to get the most out of their research and making it applicable to people with that condition.

Not all researchers are receptive to the idea of PPI and working alongside patients as colleagues, but as PPI becomes more of an integral part of research and grant applications it is horrible to think that researchers who don’t like PPI are forced into doing it and then do PPI badly and this gives a really negative experience for the patients involved. As I have more experience now I feel confident in saying to researchers if it has been a bad experience but when I first started I didnt have that confidence and I don’t know what the researchers thought afterwards and would hate to think they went on as they did and give other patients a similar experience which is why I will now say if its not been good.

Speaking at events I can get across the importance of PPI to not only researchers but also to the patients involved and how it can give us hope that there is people who care about our conditions and are trying to improve our lives.

I started off in PPI not really knowing what I was doing and if the comments I was making were correct or not but as I do more I gain new skills and my understanding of PPI is greater. I love being able to share my passion for it and hope that by expressing my passion and how it has affected me will inspire researchers to go out and plan PPI events and incorporate PPI into their research.

Today at the NRS Away day I really hope everyone got something out of what I said. It was lovely to hear all the positive comments and the thank yous that people gave me is lovely to hear.

I want to open up and if anyone is reading this post who wants to find out more about PPI or how to get involved please leave me a comment as I am more than happy to answer questions and point you in the right direction.

Any questions just ask!!!!

wPjSOn03TpKQrQjylSEVHA

Asthma Rule 1: ALWAYS have your reliever with you.

On twitter recently you may have seen that I had a small rant about something that happened the other day and I am still reeling over it. I think what got me most is that how are we ever going to change attitudes towards asthma if those with asthma are so cavalier about it.

I was at a Design Informatics Collider with a variety of industry partners, researchers, clinicians, researchers and patients. The theme of the event was ‘Design Support for Asthma’ and what can be done to help asthmatics or those who care for asthmatics which in turn would help asthmatics. There was a group of us patients there from the patient an public involvement group at the Asthma UK Centre for Applied Research. I have met most of the patients before who were there and as always it is great to meet new people in the group too.

So what happened??

One of the patients there was chatting about their asthma and their asthma control but then announced and announced proudly that they had not brought a reliever inhaler with them for the trip (baring in mind they came up by train and stayed overnight). They had their preventer inhaler but stated that their asthma was so well controlled that they knew they would not need their reliever. I was gobsmacked by this, and even quite angry about it especially the pride that the statement was delivered with.

Asthma is such a dangerous condition and there has been so much in the press recently about how many people die from asthma, how under funded asthma research is and just generally how bad the asthma situation is. The national review of asthma deaths (NRAD) which was published 2014 highlighted just how dangerous asthma is and how it is those with relatively mild asthma that are at the biggest risk from death and this year the news broke that rather than there being an improvement in the asthma death rate it has in fact got 20% worse not better.

I feel really passionately that even if you are so confident in your asthma and asthma control as an asthmatic you should never leave without a reliever inhaler especially if you are away overnight. For me my inhaler is my security blanket. I always have a ventolin (reliever) in my pocket, even when in hospital and on oxygen and nebulisers I still have my ventolin in my pocket too!! Asthma is such a fickle disease and you never know when a trigger is going to cause your airways to react and tighten up. The reason that was given for not having a reliever with them was that the weather was ok and they would not be affected by any triggers despite saying in the next breath last time they were up they had to climb stairs and were in a really bad way after this- there was no guarantee that there would be no stairs this time round.

I think the main thing that got me was that being involved in AUKCAR and being a member of the PPI group you would think that those in the group are those who are proactive about their condition, wanting to set a good example and manage their condition to the best of their ability. To do this one of the key things is to have all your medications with you. It may end up that you don’t need it, but its better having it all with you and not require it then need your reliever and not have it. Asthma and our airways don’t stop and think that they better not tighten up and become symptomatic because your don’t have your inhaler. They are going to do what they want when they want.

I am still reeling over it and so glad that there were no members of the children and young persons group there because they are impressionable and may think that because someone older than them is not carrying their reliever with them so they don’t need to either. I feel really passionately that if you are part of a group and forward facing attending groups where there are a mix of different professions who are putting a lot of time, dedication and effort into a career of helping those with asthma then you need to be acting in a responsible manner and not bragging that you don’t carry a reliever inhaler because what researchers or clinicians are going to want to help asthmatics when those they are consulting with are not being sensible and taking their condition seriously.

Sick leave- what do you do??

Being on sick leave seems to be an all too common occurrence for me. It is never just a day either its weeks and weeks which feels like months and months (well sometimes it is months).

Often people say to me they would love to be off for as long as I have been off and it must have been nice. I hate saying its not and Im glad to be back but it is the truth. I hate being off as I do love my job. I think when you are at work and having a really hard, difficult day the idea of being off is just great, and then when you have had a week of annual leave that has gone by in just a flash you long for more time off to have a good recharge so when someone is off for a extended time you think it would be bliss but to me it is far from that.

Time stands still, it feels like it moves backwards, hours drag and minutes feel like hours. It is ok when I am in hospital and unwell because you feel so awful- time stands still in a different manner, you want time to speed up so you will be out the attack and find it easier to breathe but it doesn’t speed up, again it takes forever but once out the initial terrifying difficulty to breathe has passed you are left feeling exhausted and time just passes as you dose on and off requiring medication in-between but time just passes in a haze so you really have no idea about time or what day it is. This bit is ok as you really do feel ill and just curl up.

With asthma the tricky bit is when you feel better but you feel better when doing nothing and I mean doing nothing. Lying on a bed you are totally fine, breathing is good, heart rate is comfy, pain is at a low and all seems ok with the world until you need the toilet, shower, something to drink and thats it. Your lungs tighten up, heart rate sky rockets and pain rips through your lungs and you think to yourself all you did was stand up and take a few steps but feel like you have just run a marathon. This is when time is at an ultimate go slow. There is only so much lying on your bed or sitting on the sofa you can do. There is only so much day time TV or on demand TV and films you can watch.

They say rest is good for you, enforced rest is even better for you but even harder especially when you know that any movement you do will cause you to feel pain and go backwards. It is frustrating and difficult. Many of my friends with asthma and other lung diseases know exactly what it is like and share my frustrations. For me it makes getting back to work difficult because doing nothing you feel invincible but when do you know that you are ok to go back to work?? It is a hard call and loving work means you want to go back as soon as possible.

I find my self very fortunate as I have my patient and public involvement stuff which I can occupy myself with when having to be inactive and resting. It keeps my brain really active and i feel like I am doing something good with my down time. It is important and it stops me dwelling on what I imagine I should be doing. I would torment myself otherwise. Also writing this blog and the various support groups I am in helps me through it all but I know others don’t have that which is why I am so passionate about PPI because of the impact it has had on me. I am sure I would have long given up the prospect of even returning to work or do anything had I not had a such positive experience being involved in research. It has made the time that stands still move on and passes and soon it is the day to return to work.

How do I know when I am ready to go back to work properly and actually ready rather than my brain is super bored and I need to do something? This time it has taken me longer to go back to work which Im not ecstatic about however over the past week I have noticed how many people say how much better I am looking and how my breathing appears and sounds. This is the first time in a very long time that people have said positive things about how I look or appear compared with how I look like death warmed up and sound like I have swallowed a whistle. It think this is down to a combination of things, 1 having a better steroid regime which is preventing the dip I kept having late on in the day, 2 switching medical team to a new consultant, asthma nurse etc and having confidence in this team and knowing that things are getting looked into compared to before, and lastly I have been off longer but then I was kept longer in hospital and was reliant on less nebulisers when I was discharged than when I am admitted to the Royal and get discharged often before I can even walk the length of the room and often just bounce back in meaning I am not great and more stress on my body. So there is a number of different factors this time that have changed.

The last few days have been a great test for me to see how I really am doing. Going in to work to help with registrar peritoneal dialysis teaching which I really enjoyed and felt like I was useful. I must say I do love teaching but not just the teaching about something but instilling in the teaching and training how important the patient is and not just to get them better but respecting their choice and understanding what is important to them. I feel in renal this sometimes can be over looked especially when a patient chooses peritoneal dialysis as the work up can be longer and if they suddenly decline and require dialysis without a second thought a temporary line is stuck in them and then thats them on haemodialysis.

Today was also another great check to see how the lungs were doing. I attended a collider to discuss ‘Decision Support for Asthma’ which was industry partners, researchers, clinicians as well as patients to brain storm ways to help those with asthma. It was a fascinating meeting and what was clear was the passion of all those that attended to help people with asthma. Ideas were not the same in the groups but the patient and patient choice was at the centre. As a patient it was great to share what is useful and what is not useful to living with asthma. I will write a different post about this as I hope it will have positive outcomes and lead to new innovations.  I was tired by the end of the day but a good tired and not too chesty either despite the really hot weather and humidity (which I think will only get worse as the weekend goes on!!).

 

So fingers crossed when I see the GP on Wednesday she gives me the thumbs up to go back to work and some normality can return to my life!!!

2016 Round Up!

2016 has been a pretty awful year. There have been highs but there has also been some mega low points so like much of the world I am looking forward to 2017 and to it being better than this year has been.

January, I guess the start of the year set it off, after being admitted to the intensive care unit on Hogmanay with my asthma. This really took it out of me as for the first time I could not work out what went wrong and why I went downhill so quickly. It still haunts me to this day about how it all went off so quickly.

IMG_0990

Then after being discharged too early (i am one who will go as soon as possible but this time I wasn’t and knew I shouldn’t be going home but the Dr’s were not listening!). So two weeks after discharge I got readmitted and spent my 30th birthday on the respiratory ward which I know all to well. So I guess its not too bad as I knew who everyone is etc but its not the best feeling.

IMG_1006

Photo from on my 30th birthday. At this point I didnt think the year could get much worse. I was off work so long and really worried about being able to keep working. January was one long fight and I was so glad so see the back of it.

February was a better month. Spending time with my nephew making pancakes and also being part of the Scotland squad. Despite the my last hospital admission occurring mid Scotland training weekend I was still able to trial for Home Internationals in Guildford Surrey later in the year so it gave me focus. Having that focus was a huge thing for me and a real positive in what seemed like a whole heap of negativity.

img_1493

March was my nephews 3rd birthday- so always a good time to spend with the family celebrating and eating cake!!! I also went to the Scottish Parliament again in March with Asthma UK for the cross party group on Asthma. This was the last one held and there has not been another one this year which is a bit sad as Scotland really is leading the way with asthma research and big data research looking at whole populations in databases rather than bit parts. Hopefully we will have another CPG again soon. At the end of march I also moved house. I moved from my 1 bed first floor flat to a 2 bed top floor flat just round the corner from where I used to live. It was the best move ever!!!

img_1750

April- this was the start of the year becoming good. The hard work I put in paid off. My asthma was semi under control. Or as under control as I could get it. But I was able to travel to Guildford Surrey as part of the Scotland B squad for Home Internationals playing England, Wales and Ireland. It was a dream since I was at school to play for Scotland, pull that blue or white shirt on and sing Scotland the Brave in front of a crowd. I got to do it and it may not be much to some people but it was the most awesome feeling. I enjoyed it so much and was really proud to have been selected.

IMG_1872

My club team also won the final four weekend of the Mixed clubs tournament which was great!

May- there was more lacrosse. Capital won the MacRobert Mixed Tournament, Capital won Community Engagement Club of the Year along with Edinburgh City for the after school club we run. I was also elected as Development Director for the Lacrosse Scotland Board. It was a big month lacrosse wise but also it saw world asthma day which was a much quieter affair this year than previous days. Softball and the Laxadaisicals started back up for the season!! Softball was great to keep team spirit up while there was not so much Lacrosse going.

June was a huge month and one of the most positive months of the year. Mainly because I was so busy but also because through March, April and May I had been trying not to do so much to enable my lungs to be good for what was going to hit them. We started off with a trip to Italy for my Mum’s 60th Birthday. It was amazing. A big villa in the mountains with all the family just about. My older step sister and her kids couldn’t make it due to school and the fact my youngest nephew was not born yet!!!

img_2362

June continued to be an awesome month as I travelled to London to join some americans who were over from America. We formed a team called International Inferno. The girls were from Florida Southern University and their coach Kara who had just won the NCAA Div 2 Championship. I joined them in London for a weekend and had a great laugh getting to know them and playing lacrosse with them. To say I was slightly nervous was an under statement as they have come off the back of a championship win and I am a goalkeeper who has been in the goal about 6 months!!!

img_2552

After London it was a quick turn around and the travelled to Prague to join the team there for the Prague Cup. Prague was a great experience. We were second in the tournament but it was so much more than just coming second. Have made some great friends and hopefully will see them all again soon.

img_2624

(two missing from this photo of players!)

img_2602

Coach Kara Reber in the middle in yellow!!!

So as you can see June was a huge month!! July was a month for rest and recovery and thats what I did. I really feel my body took a hammering from the constant go go go but I wouldn’t change it. It was the really good pick me up and also the sort of finale to my lacrosse playing days. I was ambitious after Home Internationals but could not resist the chance to go and play in Prague etc. Im so glad I did it. Going with your gut it a great thing!

August started off with a trip to London to speak about living with severe asthma. This was a great opportunity as I was not speaking to your average people about asthma but I was speaking to the creme de la creme of asthma researchers and Drs. I was speaking to Drs who I have read about and wanted to be under because of their expertise in asthma. The likes of Ian Pavord and Adel Mansur. I was speaking to them to give them advice of what it is like to live with severe asthma, and the trials of living on steroids. It was a great experience and I ended up coming back with a new area of interest. I joined a group of paediatricians to collaborate with them on a bid proposal for a piece of research. It was amazing being part of something from the birth of it and the idea of it to the grant application. Also this was one of the first times I was a co-applicant on a bid. Something new for me (after this year not my last either!!). My high of the start of the month was short lived as not long after my return from London I ended up having a severe attack and ending up going to intensive care for a few days and then a further week or so in hospital. I kind of pushed to get out of hospital as had big plans in September which I was not prepared to give up on (I did end up not carrying out my plans but more of that to come). This admission was tough. Access was a nightmare, they couldn’t get an IV in. I ended up asking one of my colleagues from renal to come and try cannulate me but not even they could manage it which is so unusual- renal nurses get blood out of anyone!!! It took a while to get off the IV aminophylline as well. But we got there and I got home.

img_2852

img_2951

This is a photo I like..I used my oxygen to blow up a frog balloon thing my nephew got on a magazine. I wasn’t able to blow it up (obviously- don’t think I could even now) but thought it was a funny photo!!!

September started off with me making difficult decisions. I pushed to get out of hospital because I had big meetings coming up. I had been invited by Astra Zeneca to come down and talk at their annual meeting which they were hosting in London ahead of the European Respiratory Society Conference. I went down to this and gave my talk. I made some amazing friends, one who has had their life changed by new drugs out there and the other who has asthma like me and can totally understand how it feels. Its not often you get someone who just understands but he does, and then you have someone who proves your life can be changed by drugs which has renewed my hope in the one day there will be a drug I can get which will change my life around.

image

After the meeting I was meant to stay in London and meet up with Jess a fellow brittle asthmatic who I have spoken to for about 10 years after meeting on the asthma UK forum. I was also meant to be going to a meeting with the European Respiratory Society as a patient expert on a project they are involved in and finally I was also invited to the House of Commons for a drinks reception held by asthma UK but I decided to head home on the Friday night and miss these meetings as I just wasn’t well enough. I didnt get to meet Jess either but we both agreed there would be other times!! I also had clinic in September. I am lucky in that I can contact my consultant should I need to in-between clinic times so clinic is just a touch base time. Nothing was changed and we are just going to keep going as we are and tackle each blip as they come!!!

September I also took on the position of assistant manager (AssMan) of the Scotland Senior Womens Lacrosse team. I was so thankful for this. Since not playing I have really wanted to still be involved in Lacrosse but not knowing how, so by being asked to be AssMan I was thrilled. I have found I can still use some of my sports science background and help out with the exercise testing of the players and help with the goal keepers too. I really enjoy the job and so thankful for it.

img_3335

September ended with another new experience. I was interviewed for a book which I am being featured in. The book’s working title is Healthcare Hero’s and I am being featured because of the stuff I do for research and with lacrosse in spite of my asthma. But as I said to them at the end of the interview if I didnt do what I do I would be in a big depression and have nothing to live for. Its simple as that.

October was a quiet month. I didnt feel great most of it to be honest. I was back and forth to the Dr a fair bit and emailing my consultant to. I was not really bad but not great. That horrible in between time. I managed to hold out most of the month until my GP decided enough was enough and got me in to be seen. It was a useful admission as it meant we sorted out my main relief from the chronic lung pain I have from all the exacerbations but also got rid of this viral thing I had. It was pretty uneventful other than all the junior Drs were terrified of me as I sounded awful but not awful for me!!!

November was a fairly big month too. We had the annual scientific meeting for the Asthma UK Centre for Applied Research. This was hosted in Edinburgh so I got to stay at home but it was great to meet more PPI members who I have not met before. It was an interesting meeting and also amazing all the research which is going on. Later in November my best friend got married. My little brother payed the pipes. It was held in Edinburgh Zoo and it was an amazing day!! I loved every minute of it. I just wish I could have stayed to the end but my chest was just not up for it and I had to leave. But Jenni looked amazing and both her and Rich looked so happy.

Later my brother also got married up in Loch Tay. They had fantastic weather and could not have asked for a better day. Slightly chilly but clear, no wind and no rain. What more could you want.

img_3833

Me and my nephew at my brothers wedding.

December to where we are now. December brought the meeting of Jess and her beautiful and wonderful canine partner Xenna. We have waited 10 years to meet but once we met it was like we had always known each other. Poor Xenna didnt get fed till late one night because we were just chatting and didnt realise the time till she started whining at us. She got fed very soon after that don’t worry!!!

img_3954

(me making Jess look like she has a ta!!) It was so great to meet you!!! One of the strangest things happened though. When we were wanting around the museum Xenna kept staring at me and walking over to me. We think this was because she was picking up I wasn’t well and was getting chesty. She did it several times.

Sadly not long after Jess left I was admitted to hospital with a chest infection. Maybe Xenna was right and could detect I had a bad chest and was brewing something. Even though she is not trained for that. It was very odd. The admission was fairly uneventful and I picked up ok but I was determined to get out and be ok for Christmas and be with my family. It was slightly stressful as didnt let everyone know I was admitted as it was rather routine but news got out. I just want to get on with admissions quietly and my own way unless I am critically ill and going to intensive care or high dependancy then I let everyone know as I would be AWOL otherwise!!!

Christmas came and went. A small quiet Christmas up north with my mum, step dad and youngest brother. It was a lovely time. The weather was awful- very windy, snowy, raining and cold but it meant we could stay in by the fire and reads books and chat.

img_4042

Today was back to work and face reality before Hogmanay and we welcome in 2017. Here hoping 2017 is a better year health wise than 2016 has been. I have to be honest it has been a long slog and really hard work. There have been some awesome highs but some really bad moments and some movements I never want to go through again.

Motto for 2016 has been Dum Spiro Spero

img_3997