Let’s Get Positive!!

The world is full of negativity just now due to the COVID-19 pandemic. It is naturally a scary time with uncertainty about what the future holds. We don’t have the ability to plan going forward as no one knows when the restrictions we have in place will be lifted.

Normally around this time of year or a few weeks previously the blogging world is full of yearly reviews and expectations for the year ahead. These reviews appear to be full of doom and gloom, with writers focusing on what they could not do, plans that were cancelled and how restricted their life became.

Yes there have been some pretty horrendous times but I have decided not to dwell on them as I cant change them. What I can do is take a lot of positives from the last year. I know many will question how can I bring so much positivity from a year that could be described as our annus horribilis.

ADVOCACY

This past year has enabled me to dedicate time to my advocacy work. I have been able to develop my work more expanding out of mainly severe asthma advocacy to critical care advocacy as well. I have set up several web chats for those with severe asthma who have been classed as clinically extremely vulnerable (CEV) much like myself. I felt it was important for people who are experiencing similar things to have somewhere they could speak to each other. It is hard to get advice from relatives and friends as they don’t really understand exactly what you are going through so having web chats meant we could share experiences and see how each other was getting on the positives and negatives. Sharing activities to keep us occupied during the long days.

First Severe Asthma Web Chat for World Asthma Day

The intensive care support group I help with was also moved to online sessions which we increased to once a month on the first Tuesday of the month. This is especially important just now as there are so many people being admitted to critical care with COVID who might need peep support post hospital. Having the support group online via zoom also meant that there is no travelling involved which can be hard when you are still recovering from hospital.

Moving support groups online has meant I have made new friends as well and have made 2 new friends imparticular who I am looking forward to working with as we set up a new post intensive care support group for those who are recovered and have processed their experience but need that little bit of support to get back into work and get back into the real world again.

My advocacy work is growing from strength to strength and I am loving it.

RESEARCH

Prior to COVID I was involved in a number of different research groups specifically for asthma but also general health research and critical care research. Patient and Public Involvement has become a priority now and is expected now and is more and more being done correctly and not just a box ticking exercise now. This has meant I have been doing more and more work. When COVID hit there has been a flurry of research as they desperately try to understand the virus more. This means I have had a lot to do as well. It has been so rewarding to be uncoiled in COVID research. When the pandemic hit I found it difficult mentally because I so desperately wanted to help and put my uniform on to join in the fight with the health service (although even if I was still a nurse I would not have been working due to being CEV). Being involved in COVID research means I have found my place to help with the pandemic. I may not be on the front line saving lives but I am doing my bit to help those who are saving lives on the front line.

The pandemic has also meant I can get involved in a wider range of projects. When I had to travel to places I often had to pick and choose what meetings I attended as they often involved travel from Edinburgh down to London or even further afield, so a half day meeting actually took 3 days meaning more time in my diary was blanked out. But now the only travel I do is from my sitting room to my study so as long as meetings don’t over lap I am able to attend way more which is great. The lack of travel also has health benefits because I don’t get exhausted or pick up viruses etc.

Attending the Lung Health Cross Party Group Meeting with the Scottish Government

NEW SKILLS

As a result of all the research opportunities I have gained new skills and my skills in patient and public involvement are being recognised too. For the first time on a few projects I have been asked to lead the patient and public involvement rather than be a member of the patient advisory group. The responsibility of this is daunting but I am really proud of myself for this recognition.

One of the biggest projects I am leading the PPI on is a Scotland wide and then hopefully UK wide project too. It is about developing online peer support groups across the whole of Scotland for post ICU survivors. The topic is particularly relevant just now given the numbers of people in intensive care have risen exponentially. So far we are seeing people who have had COVID struggle post ICU not just with physical issues but mentally as well due to being so ill with a condition that no one really knows how best to treat as it is so complex and so new. I am looking forward to getting this project going and cant wait to see the outcomes.

STRENGTH AND RESILIENCE

I can do anything I set my mind to. I might just need to do it a different way.

Being classed as CEV my life while shielding is not actually very different from my normal life. I did go and live with my parents for the first lock down in Scotland as we were not sure what the situation was going to be like but for this second lockdown (we didnt have a lockdown last year like England did) I am back at home in my own flat. There have been 2 main changes for me with lockdown, one is that all my medical appointments have been moved to telephone which is great and then no travel for research meetings. Otherwise life is much the same. I do my main shopping online anyway, I go out once a day for a walk with Ghillie and that really is it. Friends would sometimes come over but that was not often so much of my time was spent in my flat anyway as I needed to rest or I would be seeing my parents.

What I have realised during the pandemic and it has come from complaints from others is my strength and resilience. I never thought of myself as particularly strong before but I feel I am. I am n to just talking about during the pandemic but prior to that too. I see so many moaning about how they cant cope not being able to see people or go to the gym etc. I used to be a very social person and would be seeing friends all the time, l going out at night but now I cant. My mental strength has kept me going. I have been proactive to find things I can do despite my conditions. This strength has meant I have not been affected as much by the restrictions put on my life due to illness.

I am a firm believer in finding what you can do despite limitations. For example I cant play lacrosse anymore, and coaching has become problematic but I can help mento lacrosse coaches and also string lacrosse sticks which keeps me involved in the sport. I am able to do something positive because of my asthma. I can use my experiences to help others.

I never realised I was strong before but I think I am and I can weather this second lockdown much like I did the first time. My life will keep going as it was.

So while 2020 was not the year that many thought it would be, but for me there has been huge positives which also include being on the TV, in the newspaper, doing various videos for charities and speaking events.

One part of the year that I do want to mention and it highlights just how destructive COVID-19 can be. Over the year I have made many friends through my advocacy work and working with Asthma UK. One of those friends was Natalie. Natalie tragically died from complications related to COVID-19. She will never be forgotten and will always be at the forefront of my mind when thinking of COVID-19 and why we all need to abide by the rules and restrictions put on us. It maybe tough and people may not like it but be happy that you have the ability to complain about it. If the restrictions and rules were not in place the virus would ravage the world even more than it has resulting in more and more deaths. COVID-19 does not discriminate so for all those who are moaning at having to shield again, or have to work from home, or they ahi to home school their children; just think that you are fortunate that you can do all that. The alternative is to not be able to experience this and not be able to come out the other side and experience life as normal once again. The restrictions will be worth it.

Rest In Peace Natalie

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