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.

Friendships from HealtheVoices

My social media platforms have been filled over the last few days with posts about HealtheVoices. The application deadline has been and gone. Yesterday people received their emails saying that they were accepted to HeV20 or were waitlisted or did not get in at all.

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It fills me with joy and sadness. Sadness because I made so many friends from HeV19 that I won’t be able to see this at HeV20. With my health the way it is there is no way I can make the long travel without health consequences and be able to enjoy the conference. I am really frustrated by my health and I have always been able to beat it, get on top of it but not this time.

I am so thankful to have been able to meet some wonderful people who have stayed in touch with me. They included me in their group conversations welcomed me into their fold and I just felt like one of the gang.

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I am excited though that thanks to modern technology and the wonders of prednisolone and predsomnia I will be able to log on and watch the HeV conference live from the comfort of my own bed.

My favourite moments from HeV19 were:

  • At the opening session being pulled up for wearing a matching “plaid” shirt. Thank you Gabriel Nathan. You are excused as we have so many more matchy things!!
  • Being given a mahoosive bag of swedish fish from Kathy who we actually ended up put on the same table too!!
  • Presenting about being a patient partner in the same session as the awesome Tonya Hegamin. Her books are brilliant.
  • Having the mick taken out of me for my breakfast choice but then getting a care package of “breakfast soup” socks from AnnMarie. Also lip syncing Spice Girls with her Brady and Robert too.
  • Meeting Scott White the company chairman of J and J and bonding over living with severe asthma!!
  • Meeting and being brought into their fold the baddest bunch of diabetics particularly those we went to In and Out Burger Tripp, Phyllis, Chelcie, Christel as well as Corinna, Sue, Kristen.
  • Getting some awesome headshots from Rick Guidotti and becoming a PEARLS Ambassador
  • Meeting the fantastic HeV team who go above and beyond to make sure every advocate is happy, healthy and comfortable.
  • Lastly spending some awesome time with Mike and Eileen in Dallas. Its not many people I would happily wander through a graveyard with- Eileen!!! I had such an awesome few days with you both and it topped off a great trip!!

For now I want to leave all these photos of friends I made and friends I will hopefully see again perhaps at HeV21 if I get in!!!

 

 

Looking back at #HealtheVoices19

The past few weeks have been really tough, Im not going to lie but there have been some very dark times and hard times. Although my lungs and breathing have been manageable it has been bad enough to limit what I am doing and I have had to increase my steroids again to get me though. Mentally it has been tough. Getting new diagnosis’s is tough. My last post I spoke about how steroids are the gift that keeps on giving but they are also giving me life so I have to take them.

Social media has been such a good support network for me particularly on days when I just can’t get out and about.

One thing I have noticed is the friends I made while in Dallas are the ones who are always there with comments or free to chat. I cant believe that I only met most of these people for 3 short days but to me I feel like I ave known many of them for ages. I am so thankful for the friendships I have made and just wish I was not the other side of the pond from them as I would desperately love to see them all again. Their support is unwavering. I wish I could give them the same support they give me. I am not sure if they know the impact they have had on me. Every single one of them has their own story to tell, own problems and challenges yet they still find the time to look out for others and wit their advocacy work they are improving the lives of others.

I realised I have not posted many of the photos from Dallas so below are some of the photos from HealtheVoices!!

This is just a small selection of the photos I have from HealtheVoices but they are all part of my tribe. They get me, they know what to say and they accept me for being me and who I am.

Thank you everyone!!

My HealtheVoices19 experience!

Last night I was catching up on reading some blogs and came across one that was written by one of the other people who attended HealtheVoices (HeV) who opened her blog post with my exact thoughts. She had been drafting and redrafting posts about her experiences of HealtheVoices and not knowing quite how to write it. She came down to the point of just getting it out and putting it down in a post. So this is what I am going to do as well because like her I have been going over how to write my experience and then rewriting it and never being happy or knowing quite how to word it.

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So here goes…

Leaving the UK to go to Dallas was a mix of nerves and excitement. The lead up to the HeV event was so positive and the support from everyone was there right from the start so I was feeling at ease but also felt a little is this really going to be like this once I am there too. A small hiccup at the airport but I was soon at the hotel and getting ready to settle in.

There was no real plans for the Thursday night. There was dinner but it was a buffet and you could just go down and eat when you wanted. I am never very good at these things and went downstairs several times with the intention of going in to the dinner room but I kept bottling it so would head back up to my room. I was too nervous, and tired because I was still on UK time and had been up for about 24 hours at this point, but I needed to get over jet lag so I could enjoy the conference without crashing, so I forced myself to go in and join a table. I am so glad I did go down. The slight awkwardness of plating my food and all the time thinking which table should I ask to sit at, who won’t mind if I join them, there was 101 things flying through my head but actually some of those who I had my first meal with in Dallas are also the ones I had my last lunch with as well. I did have that bit of security with me at dinner though- I had my name badge/lable/neck thing so anyone I met knew my name, knew I was speaking but also knew that it was my first time attending the conference.

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When I have attended conferences in the past I have felt at ease, and with each conference I attend and speak at I feel more confident but this was different. When I have spoken at conferences I have been there and what I am speaking about is my specialist interest and my experience, I tended to be the patient giving my opinion of essentially being an expert patient. This was a different ball game. Everyone there was like me, we are all experts at living with our own conditions and doing our own thing to raise the profile and difficulties we face trying to live a functional life.

I have never really thought of the work I do with asthma as advocacy, I actually didn’t like the word advocacy but attending HeV I came away feeling that maybe it was and I was an asthma advocate. People often ask me what drives me to do what I do, how do I come up with content, ideas etc. I never really know how to answer because I have never thought about why I do these things. I just do it because I hope that by sharing my story maybe people or even just one person might be able to take something from it and their experience will be a bit easier.

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It sounds cliche but after my initial nerves everyone was so welcoming at the meeting. Wether you were a first timer or had been at all the HeV meetings in the past everyone was on the same level- we were all there for one reason. Everyone there is motivated to help make a change. There was a variety of people who have had a condition all their life, then some with conditions that vary, go into remission or are cured from it but through their experience they are sharing knowledge gained, experiences which were good or bad.

I still really am struggling to put into words all my emotions from the meeting but I think the photos speak for themselves.

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So where do I go from here??

I have a few projects that I would like to pursue the most pressing one is to try and get rid of all the stock images media outlets are using which are subconsciously promoting poor inhaler technique. Almost every day I see a photo being used on a media article which shows a child or adult using a MDI (metered dose inhaler) with no spacer and even though there is no spacer the technique is not good either. In the UK there is an inherent problem with asthma management and self management resulting in high death levels from asthma attacks which can be prevented. One of these preventions is correct inhaler technique.

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And a last disclaimer:

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#HealtheVoices 2019

I am super excited and cannot remember if I posted about this before but now that everything is getting to the final stages and it is really going to happen I thought I would write a post all about this next exciting opportunity.

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HealtheVoices is not something I had heard. Fairly recently while looking on Twitter I came across them and the conferences they have done as well as the amazing patient advocacy. HealtheVoices provides a ground breaking leadership conference for those involved in advocacy for their own health conditions, the communities around them and others as well. The conference is to empower those in advocacy to continue the work they do and get as much impact as possible from it. They have been organising these conferences and this year it will be their 5th event.

I can’t remember applying for the conference or filling in the form so when I got an email in January asking me to be a speaker and lead a session I was shocked but also had a huge sense of pride that despite asthma dictating my life I have had so opportunities as a result of it which are truly once in a lifetime events.

The event this time is over in America. I fly to Dallas Texas in a weeks time and am so excited. I have never been to Texas and will have the chance to have a few days being a tourist out there to.

We have just got off possibly the biggest conference call I have been part of. I think there were 69 participants in total. Most of these people were members who are coming to the conference and not all speakers. They said there was well over 350 applicants so to be short listed to give a talk is probably one of my greatest achievements.

The one down side (if you can call it that) to this is I have had to 1) prepare what I am going to say and 2) put together a power point presentation. Many who read this will know my aversion to slides and my slight aversion to preparing. As Allison would say I just like to wing it or busk it!!! For this though I cant. So I have put together some slides myself which I think look ok just waiting on the legal team to give them the ok! I have also written most of my talk. 45 minutes is a long time!!! I will be giving my talk a test run with my Mum so fingers crossed that goes well, may even run it by my little brother too depending how brave I am!!!

Public speaking is something I have grown into. A good friend of mine and PPI colleague Elisabeth likes to recall the story of when we first met when I was so shy and quiet that she struggled to hear me speak. Now she struggles to get me to shut up!!! With every talk I give I can feel my comfort with speaking grow. I still get very nervous at certain events and was so thankful on some occasions that I have had a lectern  to stand behind because my legs were shaking so much but on the whole I feel ok when I am speaking.

I am so proud to be able to go and share my story and tell others about how great being involved in research is, all the different things you can do and how to get involved. I am also teaming up with webMD too which will be awesome as they have a huge online platform.

Will be tweeting and blogging from the conference if there is time although it seems like a jam packed program. The conference will be streamed live so will post the link for this when I know it. Remember though there is a time difference!!!