Dates in time

Isn’t it funny how a specific date can affect a person. Today, this date, is that date for me. 3 years today I had a bronchoscopy that changed my world. I was diagnosed with severe Tracheobronchomalasia (TBM) and nothing would be the same again.

I am most reflective on days like today. The what if’s, for the life I had but no longer have, the changes to my health, appearance, how I feel about myself, who I am and the daily struggle that comes with living with chronic illness. That management of that becomes your story, your job, your focus. Everything else falls away.

The diagnosis date for me always has these repercussions. One day I was at work, working full time, not in great health but coping. I had the procedure to investigate what was going on, developed pneumonia in both lungs, confirmed 95% collapse of large airways and a future of life attached to a breathing machine for a good proportion of the day sharply came into focus. If you have followed this blog for a while you will already know this story, but it still hits me in the guts thinking about the speed of it all.

I have tried hard the past year to stop looking back, to stop focusing on the what ifs, to enjoy the moments ahead and largely I have achieved that. Today’s date marks me allowing myself just a moment of reflection, of my life before.

The last few months in lock-down have been strange for many. For me, it was nice in some ways, life was slower, my fatigue more manageable, more sleep, less contact, feeling safer not just from virus’ but from colds and flu. These have been outweighed with the more unpleasant side. Stress, worry, isolation, frustration and feeling utterly helpless at times. Many people have suffered in so many ways through this time, I want to acknowledge that and say everyone has had their own experiences, good and bad, all I can talk about is my own as part of the group classed as extremely vulnerable to COVID-19.

Strangely the strategies I usually have in place to minimise the boredom day to day through the winter have not cut it for me during this time. I have barely been able to write anything since April, I took part in an online writing course run by the brilliant Wendy Pratt and that helped with a focus for each day but since then I have not written a thing until today. I stopped writing in my journal, have only just started reading at my usual rate again, and have only completed a handful of jigsaws.

I got through each day on a diet of snacks, sleep, tv, cuddles with the dog, chats with my family, Zoom and Whatsapp calls. There has also been an enormous amount of time spent playing animal crossing! It must be great for those who have been productive during this time, achieving everything on their lists, being creative and finding inspiration. I was not one of them. For me, I needed to deal with each day at a time and just get through it.

The sense of life getting back to the new ‘normal’ feels hard at the moment. As time goes on I feel more, not less scared about when it comes to leaving the house and integrating back into normal (new normal) life. Mixed messages from the government, media and internet don’t help. I know it is leaving me confused about what I should or shouldn’t be doing. There is still another month for us in the shielding group to be able to go out, I hope this feeling changes and I feel more confident as we move closer to that date. Currently the thought of being in public scares me but regardless I know I will push myself and only do what is safe. I do know I don’t want to spend my life locked in at home.

This blog feels like its been a bit all over the place, much like me at the moment, and apologies for that. I am definitely rusty in terms of my writing but want to end this blog as I started it. With another anniversary. This date not only marks my diagnosis 3 years ago but also marks 2 years since I wrote and published my very first blog post. Of all the things I have achieved these last 3 years this is one of the things I am most proud of.  Many thanks for those who have read and supported me with it over the last two years and all 42 of the blog posts written during that time.

Stay safe out there all, I will try to not leave it so long next time…