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…

 

Distance

I’ve been trying to write this blog all week. As soon as I think I had a handle on it, things changed. Now weekend has passed and some big decisions have been made for the country I feel things are settled enough to make an attempt at it.

This last week it was officially requested those in the ‘vulnerable category’ were told to immediately isolate, practice social distancing, keep remote from life, whatever you want to call it. Honestly, I had already pretty much been doing this for at least a week before the announcement was made and even for a few weeks before that I was limiting who I saw and what I did. When I read about this virus months ago, and saw what it did to even the healthiest of people, I knew it was something I should avoid. I am after all a pro at social distancing.

None of this is new, and am sure its not new to many others who have to distance themselves to protect their health. I can only speak for myself with a severe breathing condition but I am 80% isolated over the winter months as it is and keep my going out and mixing in crowds to a minimum. I’m in danger from the bog-standard flu virus so this is old hat. Granted the rest of the country getting involved with their loo roll, pasta buying, selfish hoarding madness is new but the keeping yourself out of public, hiding away to stay safe for your health. Many of those with long term illness understand and experience this regularly.

The governments approach initially was frightening to say the least. I do feel more comforted as the week has gone on that they are doing all they can. That word keeps springing into our vocabulary. Unprecedented.

Not physically seeing people is going to be the difficult one for me. The information issued talks about going out and getting fresh air (whilst keeping your distance from others). I wish I could try that! It’s not like I can go for a long walk in the country. My breathing condition already restricts that. Thankfully the sun has begun to pop out so our garden chairs have been dug out from the garage and I can safely sit out there. I just need to wrap up warm as it’s still fairly chilly. The garden will have to become an extension of the house and my way to get fresh air. Well as long as the weather stays our friend and a helpful neighbour at the back of the garden doesn’t burn rubbish every day like they did yesterday. Grrrr.

Over time I have learnt how to play the isolation game. I like structure to my day, small wins, and taking on activities that don’t rot your brain. Like endless hours on social media. I’m still not quite there with that one but the more I spend away from it at the moment, the better I start to feel. It’s about getting dressed and doing my hair even when there is nowhere to go, even if it’s just into joggers and a hoodie to go and sit in the lounge. It’s an act of not giving in. I will try to keep my body moving where I can, how I can, stretches and moving around the house, as this condition allows (even that changes day after day). I will read, write (hopefully), do some good jigsawing and kick off doing some much-needed jobs that have been on my mind for a while or at least “encouraging” the hubs to do them!

A sadness has overcome me this week witnessing the selfishness of others. I won’t dwell too much on that as I have done plenty of ranting on social media on this topic and don’t want to repeat myself. Only to say it never fails to astonish me how selfish people can be. Especially around stockpiling and leaving vulnerable groups without. It has been breaking my heart.

Currently we (myself and husband) have food, we have the medication we need and we have buckets of support. I have been contacted by so many people this week with offers of help, have had others searching for items for me removed from our recent online Tesco shop because of no stock and we have enough for a couple of weeks before we will need a significant shop again. At this point can I just point out this is how we shop anyway usually so not altered the position for Covid-19 outbreak.  People should think on before emptying the stores, before booking up all the online delivery slots weeks in advance. Its selfish and it’s not necessary if you are physically able and it is safe for your health and your families health, to leave the house.

We are exceptionally lucky and have felt very sad that not everyone will have the support system in place that we do. That there will be elderly or sick who don’t have the same network of support. It does seem like people are pulling together, certainly in my village there is a big effort in looking out for those who can’t get out. Never more have people needed to look after each other (whilst staying apart).

I’m sure the mental health side of this isolation is going to really take its toll on people as time progresses, including myself. Already I can feel myself worrying about the days that I will wake up feeling low. To combat I am trying a new routine of starting the day with some upbeat music and am lucky the husband and the puppy are in this isolation thing with me.

I am trying to think of it that in the end you are isolated as you want to be. Physically you won’t have contact except with those you live with but we have to use the brilliant technology we have at our fingertips allowing us to stay connected. My favourite part of this week has been chatting out of my bedroom window to my family and on Facetime/ Whatsapp. I can still see them, they can still see me, just not physically next to each other.

On a final note, I want to say, please take this seriously. I often feel like I can’t breathe, that’s the nature of my condition. I know how it feels to have airways that are reduced in capacity. All I can say is that it is utterly frightening. You may catch this virus, it might be minor for you, but my advice would be don’t risk it where you can possibly avoid. Not to use too many clichés, your health is your wealth, don’t gamble with it. For your sake, and for others.

Stay safe everyone, take care of each other out there and hoping this all passes quickly so normality, whatever that is.. Until next time….