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.

Making tough decisions

I was so happy and excited when my Mum said we were going to be going skiing in January. (I have not skied in over 6 years now. Once my life, I ski raced, I did race training and was on the slopes whenever I could. I moved to Canada to pursue my dream career). I forgot all about my leg and the small issue I have with walking. I was so excited at the prospect of getting back on the snow back doing what I love.

Then it hit me.

I have a leg that doesn’t work properly. How the hell am I going to be able to ski?

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(last time skiing in Les Saisies having the time of my life)

Being me I was determined my leg was not going to stop me. I went straight onto the internet and was looking up the Ecole de Ski Francais to find out about para skiing. Still excited about the prospect of being on snow again.

Then first frost hits and I find the icy conditions a major challenge with my leg. Walking is even harder than it previously was. I had a few bad falls which mostly bruised my ego as I felt so embarrassed being a young person falling over doing the simple task of walking. Combined with this I had a bad chest infection which hit me hard mainly mentally rather than physically.

It hit me mentally as it brought back memories of that last bad attack and how hard it was on me and my family. I started to have all of these what if scenarios. What if….

  • I have a bad attack out in France and I end up in the same state again.
  • I have a fall skiing and it causes me a chest injury compromising my breathing
  • I have a fall skiing or someone skies into me and I don’t realise my leg is badly damaged
  • I get unwell out there
  • I get stuck going into the village and cant get myself back
  • I end up hating skiing because I cant do what I used to as skiing was my life
  • I get jealous of all the others out skiing all the runs I should be skiing but Im not because I am having to rely on other people to get me about

I just had all these what ifs. Some of them really trivial things and some of them more serious.

It took me a long time but I decided I really cannot risk going out to France in the state my body is in right now. I am not going to be going out with my family and instead staying here at home.

Im not sure what had hit me harder the fact that I am not going away with my family or that I have myself accepted that I cant do something and have backed down. I normally always try and find a way around my limitations find a different way of doing things or through pure stubbornness just get on with things. I feel weaker now. I feel like I don’t have the energy to fight myself to find those routes I used to. It scares me that I am in this position now.

I am going away up north for Christmas looking forward to getting away and recharging, taking stock of everything and making a plan for the future as life really has changed a lot.

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(Skiing with my Uncle Rob in the back bowls of Whistler. Enjoying life. This was the last time I skied. It was about 6 years ago).