Trying new things

Hi all hope you have been having a good few weeks. Things have been nice here, some appointments, some relaxing, some writing (eek) and lots of other small bits of things going on. I thought I would pop on here and have a little first of the month update as to where life is at.

*Spoiler alert – things are OK it is safe to read on!

I saw my consultant a couple of weeks ago and he is happy with how things are progressing (or not more to the point!) with my illness. I am relatively stable in the grand scheme of things, well established with my breathing machines (CPAP and nebulisers) and making good attempts in order to keep infections minimised. That is the main aim for me going forward to reduce the serious infections and pneumonia’s. Or life-threatening pneumonia’s as he refers to them. Scares the shit out of me when he says it (sorry for swearing) but as scary as it sounds, I appreciate the frankness. He tells it as it is in order for his patients to understand the seriousness of this disease, of the importance of managing our treatments and looking after ourselves in order to maintain better control where we possibly can.

He had great news that the TBM operation is finally up and running in the UK and that it’s proving to have good initial results to those that have gone through it. This is great news and for an operation that was perhaps ten years in the future is now maybe five years away instead. It’s not something I will be pushing for yet for many reasons personal to me. Plus, as it is new and still getting established, it is being prioritised for those who are in a more difficult position, for those who are suffering regular life-threatening pneumonia’s regularly (stop saying it, stop saying it!) or who are unable for whatever reason to get on board with the breathing machines (CPAP/ BIPAP) and have no real quality of life. Whatever the future holds for me its comforting to know it’s there as an option should things further deteriorate.

I have also started a new writing course for June. Similar to the April one I did where you get email prompts delivered to your inbox every day in the month to assist in inspiring and getting the creative juices going! I thoroughly enjoyed the April one and was very flattered to have some pieces included in the website anthology that the writer who runs the course selected and set up. Link to my contribution and other pieces below (For those who don’t know my work can be found under Angela McEvoy, my actual real-life name!).

One of the strange things I had to do was write a biographical piece in the third person, about myself, as a writer. This in itself blew my little mind. I can’t believe that I get to do these things. That something pretty great is coming out of something really pretty horrendous.

The pride I have for my writing when I publish a blog, or get nice feedback from one of my pieces, or get my work chosen for a website (WHAT???!!!) is a totally new feeling for me. It’s something I rarely felt to this extent in all the years of paid work. I obviously felt proud if I had done a good job or a productive week, or received some great feedback, but this is different. Much of this comes from my heart, is so personal to my life, and is a vulnerable process putting yourself out there. Being creative and producing something, anything really, is a very new experience for me but I hope that I continue to feel this pride as time goes on.

My other related piece of news relating to this is that I can say with utter excitement that I have started writing a book!!  It has always been a dream of mine to do this but never thought it was something that would actually come to fruition. I didn’t seem to have the drive, the confidence or even any particular story I wanted to tell. Thanks to the April writing course (mentioned above) it seems to have unlocked something in me that has helped me on my way.

One of the prompts in April has set me off developing a fictional story that I feel like I can run with. It could be I get halfway through and it is going nowhere but to be able to start, to feel myself light up with ideas feels nothing short of wonderful. It might take me years, I might never finish it, but I have started and that in itself feels like an enormous achievement after everything I have been through!

This week has definitely been a week of firsts. I also went to the cinema and took my portable breathing machine with me and did my treatment right there in the cinema. IN PUBLIC. I couldn’t work the timings out around my treatment, film times and food times and wanted to do it all. So, I did. I packed my machine, portable battery and off I went.  It was OK. I felt self-conscious for sure, I would have preferred not to have to do it, but needs must and it was one of the most perfect places to do it sat in the dark! Will definitely do it again in the future that’s for sure.

Trying these things, doing new things, pushing myself that bit more just opens up extra parts to the day I feel I have been missing out on these last few years. As I have spoken about numerous times each day is planned timing wise pretty much from the moment I wake up. Its stressful and tiring but at the same time, trying new things, trying out ways to make it work is all good in the long run, whether it works or not because it could just unlock a new activity you thought previously had been closed off for you.

On that note, I will bid you a goodbye and wish you all a lovely week ahead whatever you may be up to. As ever, thanks for reading and until next time…

April Anthology Writing Link:

Author: lundoslungs

This is by no means a reflection of everyone's experience, its just me opening up about mine. Its me finding my way through the hazy experience of living and dealing with a long term disability alongside daily life, both good times and bad.

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