The past few months has been a whirlwind. And once again, like 99% of the human population I’ve been seeking answers when in deep despair and suffering.
The unknown, from time to time, creeps into my head, especially in moments of quiet and loneliness. And the past few months, there’s been a lot of that, where I’ve endured personal heartbreak. One of which I won’t expand upon in this post because it’s too personal and painful. But where I have the liberty to delve into my coping strategies for grief, loss, fear, anxiety and worry. In the hope that it may help others.
Coupled with my chronic condition, which hurled up more ‘mysteries’ and the unknowns of life, emotionally I felt like a burn victim- red, raw and in severe pain. And it was hard for me to separate, completely separate events if you get what I mean.
You see, whilst I thought I had COPD, I was referred by my main doctor, to see another specialist in Dundee, a town about 1.5 hours away from Aberdeen, my hometown. And this was probably 1 week after the breakup. I was driven by my parents because I physically hadn’t slept, ate or had the energy. I also didn’t have the stomach to face potentially more news about my already debilitating condition and at the thought how much worst my life could get.
But. And yes there’s a big BUT coming. It gave me a piece of the puzzle to my health riddle. Not all of the answers but more insight. And boy was I glad I went in the end. The specialist did a bunch of tests, one of which was for Primary Ciliary Dyskinesia which came back negative. He also told me that I may potentially have a mixed bag, so both Emphysema and Bronchiectasis. The latter is described on my ‘about me’ page and has also been updated, as before I thought I solely had COPD.
He also gave me more insights to what it means if I ever did need a lung transplant. Not to view it with such disdain and gave me an analogy:
“View the lung transplant as a cliff’s edge. Now think, there’s 10 meters, 100 meters and 1000 meters behind the cliff’ edge. There are two types of people. Those who are 1000 meters behind the cliff edge, but are deteriorating extremely fast and hit the cliff edge sooner rather than later. And those who are 10 meters behind the cliff edge but are inching along very slowly and may not even reach the cliff’s edge. AND yet, even if you do reach the cliff’s edge – it still isn’t over. Because a lung transplant is there to improve the quality of your life, not reduce it.” That last line may seem obvious to some, but you need an explicit reminder that this is indeed true.
I was in the latter camp, close to the cliff edge but probably stable and deteriorating very slowly (or I might not deteriorate anymore…)
Initially the part about bronchiectasis confused me, as I knew I was already one of the most baffling cases to my doctors (No 2 of the Top 5 most confusing patients to be precise) . What was it I actually had and why do I have it for such a young person, what caused it? And with several different diagnosis’ over the years, the frustration could have just swelled and swelled. The lung transplant explanation reassured me, but the diagnosis of what I actually have seemed to be going round in circles as it wasn’t so long ago I was told I had LAM lung disease. At the time, it probably brought up old wounds.
Some of the time, I had envied others in the way of coping with things ‘normally’. To put this into girl speak, I was heartbroken, sick of battles, exasperated with my illness, exhausted from fighting and I wanted to numb the pain, I didn’t want to have to think anymore because it was too much to bear. Many have either gone out and drank away their sorrows or distracted themselves through other means such as socialising, physical exercise etc. But my lung condition prevented me from doing this.
Once again, I viewed this a limitation, where I shouldn’t have, because if anything, it forced me to cope with matters in a healthy way (instead of getting plastered with the girls on a Saturday night because that isn’t exactly an answer either).
So instead of letting the frustration take over, I eventually and naturally tuned back in to spirituality and in the laws of Buddhism, I knew I had to face my pain and tap into it. Which is one of the scariest things to do in and of itself. But a selection from one of my favourite books (Tears to Triumph by Marianne Williamson) explains and reminds us:
‘This journey is a path of self-actualisation, in having the courage to face our suffering- to endure it, to learn from it, to process it, to transcend it- we often find keys to living our lives in the most powerful way… Few people emerge from the human experience unscathed. Yet we can often gain miraculous insights from our sadness and avoid the pain, is avoiding the gain”
How beautifully written is that? She also goes onto describe how many people go through a period of extreme pain and loss, but it becomes necessary to the shaping of your character, future and ‘initiation into the journey of enlightenment’. But first you have to be willing to see it that way. Buddhism teaches you too, that you cannot control everything, but can control the way you see things. And sometimes it is okay to not be okay, that is being human. It is about perspective.
Did I emerge from that doctor’s appointment disappointed? Hell No. Well the first few days, I found any news (good or bad) hard to take in because of the events at the time. It also means that this part of my health journey can hopefully be improved upon because now I can solely focus on my healing and fight this battle ‘myself’ because I do indeed have that stamina, strength and was built for such triumphs. And the parts of that conversation or appointment, which I probably took for granted at the time, such as the lung transplant analogy and the kind attitude of the doctor, is where I can find hope and faith. Plus, there were more solid answers potentially coming my way.
In viewing the path as forging itself to a better future was eventually what dawned upon me. Because then a couple of weeks later, I had a spirometery (breathing) tests and was told it was the second best reading since I moved back from overly polluted London in 2016. So whilst my lungs are ‘stably bad’, this is good news. It is not deteriorating.
This allowed me to put things into perspective again, where I had to try really hard to focus on the positives, not on what I didn’t have or what I ‘lost’ in the few weeks before. And again, there were many blessings around me including my incredible parents, heart-warming, inspiring and uplifting friends and my cutest little puppy to keep me going.
Not to mention a roof over my head, access to good quality food to keep my mind, body and soul alive as well as the aptitude for being able to tap deep into my soul. Having the mechanism itself is not only the armour that prevents me from self-destructing, it teaches me to live and live fully. And by live fully, that doesn’t mean being a wanderlust queen (though that is not a bad thing either), but by embracing right now, because you’ll never ever get those seconds back. The simple things.
Never a straight, linear line, life will have its ebbs and flows. It is naive to think it will constantly be ‘up’ and that one should forever, always be happy. And whilst it seems gloomy to think that way, it is actually realistic and an empowering thought pattern to know that. But also to remember that in bad times, the power of your mind and positive thought patterns is what can lift you right above those clouds on a stormy day, back into the light.
And it is at this point where I owe special thanks to Dr David Miller, my respiratory specialist one of most proactive, knowledgable and remarkable doctors who has taken the time to get to know me, my condition, help me get answers and keen to keep me healthy. Same goes for Dr James Chalmers, another specialist who provided me with the lung analogy and yet another one of the amazing, professional team of Scottish doctors who are saving lives and doing the best they can for people like me.
If I were ever to offer anyone advice for coping with a chronic condition, its limitations and in general, the hurdles in life, there are a few books I’d recommend:
- You can heal your life, by Louise Hay
- Tears to Triumph, by Marianne Wilson
- Material girl, Mystical World, by Ruby Warrington
You can go into it with an open mind, you don’t need to be religious or even spiritual to read these, but they do offer exceptional ways of thinking. Just as flexing the physical muscles build an enormous strength, flexing your emotional muscles is just as important.
My therapist (gosh what millennial doesn’t have one these days ;)) also advised me it’s useful to take the pressure off myself to feel a certain way and trying to be better by a certain time. And to visualise breathing/space around intense emotions e.g. whenever I get to a stage of overthinking or gripped by a certain negative emotion, to visualise ‘softening the edges’. I think this is a very good technique and one that leading hypnotist, Paul McKenna, would certainly advocate.
Grief, loss, pain, tragedies and all those things take time and there’s no date stamp when you ‘should be better’. Listen to you intuition, your body, allow yourself the time to cry (it’s good for the soul), let the anger out (don’t bottle it or hold onto it)- it will cause disease in the body ( a core lesson from good old Louise Hay) and go on that initiation path to enlightenment. It sure beats suppressing the pain only for it come back with a vengeance later.
One of my good friends also reminded me that in times of extreme pain and loss, its when singers produce their best songs, dancers dance the night away and artists paint their best paintings…
I’m still on that journey with many others, but I have a newfound sense of hope, faith and courage. I do hope it can help my fellow sufferers too. Let’s do it together 🙂