2019 the good, the bad & the ugly

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

My thought for 2019 was:

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

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

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

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

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

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

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

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

I hope everyone has a fantastic 2020.

Live the life you want to live.

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!!!