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…

 

Unplug……

I have been debating this for a while but I think it’s time for a little social media unplug for me. There have been a few things of late that have caused me to realise I spend too much time head down on my phone. I spend hours looking into everyone else’s lives or reading rubbish, watching videos or shopping online for things I do not need!! I want to get out of the habit of reaching for my phone when I am bored.

Some days I feel that I am living my life through others and some days this makes me feel worse not better. Of course, it makes me happy seeing what people are up to but sometimes it also makes me sad. The realisation of what I am missing out on and feeling not quite enough in myself because of the illness, and knock on impact of this.

I am getting drawn into things I don’t want to be involved in, and getting cross at things that shouldn’t be on my radar. It is all of my own making. No one is making me pick up my phone but it is a habit and I sorely need to break it.

As an experiment this week I set a time limit on my social media and much to my dismay was reaching it by lunchtime.  The internet is great for a lot of things but because I spend so much of my time sitting around doing treatment it is easy to just pick up the phone and pass the time.

So, I have taken the decision to break the cycle, go cold turkey and start investing my time in things that will make me feel better. There is nothing wrong with the odd dip into social media, but my usage had tipped beyond that. I was looking at other people’s lives rather than investing in my own. I had slowed down with my reading, writing and even doing the small jobs I can do, to just sit and stare and it hasn’t been making me happy.

As someone who has been given the gift of time to literally sit still for 3 hours plus hooked up to a machine every day (see I am putting a positive spin on it), I want to try and use it in a better way.

Social media chat aside I have had a quiet time of late. I have been battling with overwhelming tiredness and haven’t been able to quite pull myself together. As a result, I have had to press pause on a lot of other stuff whilst I have rested.

I haven’t felt unwell just massively weary and sleeping much more. Which is quite an achievement given how much I sleep anyway. Thankfully, I seem to be coming out the other side of it and although there have been no other symptoms I wonder if I was just fighting something off which I seem to have been able to do (touch wood!).

As a result of the tiredness and knock on effect this had on me physically, I’m re-focusing on my overall well-being and building my strength. What I eat, to fuel my body correctly but not overeating, but also keeping my energy levels up. It’s a fine balance, and I have not got to grips with it yet but I am trying to be make better decisions in the hope it will help overall.

I have learned to listen to my body in terms of spoon/ energy level management so this is my next focus. I have sourced some more holistic treatments that can potentially help with symptoms and effects of this illness and will of course report back on anything I find of use!

We have a big family holiday booked in a few weeks and I cannot wait to get off that plane and feel the sunshine hit my face. A week of relaxing and spending time with loved ones. This unplugging is coming at a good time. I want to spend my time focusing on making memories we can all reminisce about for years to come!

I will bid you a farewell for this instalment, a few days following this blog being published I will be going cold turkey!! Not sure how long it will be for, might be a month or more, might only be a few weeks. Rest assured I will be back all guns blazing and hopefully feeling re-energised.

As ever, thanks for reading and support and until next time……

And just like that it is 2 years…..

And just like that it is two years. My two-year diagnose-a-versary (new word of the day!) Two years ago today, I had already my last day at work, my last few days of not knowing about machines, pain, pneumonia’s or the problems that were soon to come.

Today I feel sad, it’s a hard day but I am also feeling reflective because it is also one year today since I published my first blog. A different, more positive anniversary I suppose (or blog-a-versary if you will!!).

I read that blog now and am so glad I started documenting this journey. Because, I can look back and see that both physically and mentally I have come a long way. In a relatively short space of time.

That blog was powerful for me, as it was me speaking out, sharing the truth about the awful year that I had.

That year was bad, this year has been better. Yes, there are still all those things going on, the pneumonia’s, infections, hospitals, machines, not knowing day to day how I am going to feel, the exhaustion, and the fear. That never leaves. I can recognise that there has been more balance in this year then there was before and that’s worth noting.

That blog post focused on the journey that was to come and this last year has certainly been just that.  At that point, and until very recently I was struggling to accept giving up my career, and the vast change in my life and health but as the year has progressed, I feel more accepting of things, have new goals which are different, but no less important.

I know that things won’t always be like this, my life and illness change overnight, but even now, feeling sad I can recognise how far I have come.

I have learned to better balance my energy levels, my ‘spoon management’, and built up a supply of knowledge that helps me deal with what this illness randomly chooses to throw at me.

I have had a holiday, two in fact! I have started writing a book, I have taken part in two month long writing courses, had some of my work published on the back of one of those courses. I have felt like I have begun to take part in life again.

Two years on I am now feeling more in control of understanding what is happening, to read the signs to manage my symptoms, and also to better understand what I’m capable of. TBM will never go, my airways will never un-collapse or get better and I am learning the deal with that on an almost daily basis.

There were times when I questioned the strength it was taking to fight through the really bad days. But I did it and I’m here and have reached a point of stabilisation and understanding.

This day will always feel sad, but better still it has made me reflective. I have managed, I have made it through and I have things to be happy about. Last year it was hard to think about those things as I was in the thick of it all but its clearer now.

So, I guess I am finishing on a thank you. Thank you to each and every one of you for helping me through the worst two years of my life, thank you for being there, be it as my family, my friend, a fellow TBM warrior or as a supporter of me and this blog.

I hope you will continue to stick with me as my journey continues …

 

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:  https://wendysaprilwriteathon.home.blog/