Well it goes without saying, if you’re struggling for air or feel like you’re choking, A&E is your first call or 999. That’s common sense. But when it comes to symptoms that are unusual and is not any of the above, yet can still be warranted as serious, I call my specialist consultant asap.
I’m trying to get used to sharing as events occur or more on a ‘live’ basis. As we speak I write this as I’m in hospital at the present moment.
Three nights ago, I came back from a week long business trip in London and I was at the tail-end of an infection. Nothing that couldn’t be sorted with antibiotics and actually I felt like I was getting better. I arrived back to my home in Edinburgh on the Friday and I was fine for two days. But then on Sunday, out of nowhere, I started coughing up an unusual amount of blood. And it wasn’t the frothy, mucus kind (as gross as that sounds), it was what seemed like pure bright red blood. Lots of it. I didn’t even feel that poorly, but of course, it FREAKED me out.
So without doubt, I phoned my wonderful respiratory specialist consultant immediately on Monday morning. His secretary answered and passed on the message, but he knew the severity and called me back within 5 minutes. I’m lucky in that respect, to have such a caring, attentive and super- responsive doctor. We deliberated if I should just got to A&E in Edinburgh but he decided it would get complex if I was admitted there and no one knew about my case. Since I wasn’t gasping for air, he asked me, if possible, to get back to Aberdeen (about 2 hours drive) and be admitted there.
Thankfully, my auntie who also lives in Edinburgh, drove me back. On that 2 hour journey home, I was terrified and as irrational and melodramatic as it sounds; I was thinking about how they play it out in the movies. When someone coughs up blood like that, they’re usually dying. YES I was thinking that -don’t judge ;). I thought to myself, jeeez, am I dying?! Do I have cancer, a tumour, do I have ebola, am I bleeding from inside-out? Luckily my family were there to keep me sane and reassured me ‘Kim, if you were dying , you’d feel it a lot more!’
As soon as I arrived, I was admitted and had an x-ray done within 15 minutes. CT scan and other tests were carried out within the same night (shows the importance of a competent and beyond-good doctor) . They did not treat it in a trivial way at all and knew how serious it was.
The next morning, I was UTTERLY relieved and was thankfully told it’s not cancer, tumour or blood clotting. Phew, nothing sinister!
It led to the next questions though, why oh why, do I have this and why am I still coughing up blood? I was frustrated, that once again, I always seemed to get something, that is unexplained (to this day, the doctors are still trying to find out what caused my Emphysema as I’m a non-smoker).
But they said the most logical answer was a combination of severe infection, prolonged coughing and exposure to London air pollution for too long, and likely that it burst some blood vessels.
As I go through the experience, I’ve once again felt a number of emotions from anger, frustration, sadness, fear, everything. And I’ve been feeling mad at myself for not being ‘stronger’ or being ‘ungrateful’. I mean, at the end of the day, it’s not cancer right? And there are millions suffering from that card dealt to them. How could I be so selfish, I thought.
Then upon speaking with some amazing friends, they reminded me I’m only human, and sometimes it’s okay to not be okay all the time. In this day, we’re surrounding by messages which have the good intent of guiding you through positive affirmations and a positive state of mind. This ‘mindfulness’ approach is something I fully embrace and is all well and good, but all too often, some practices or people teach that- if you’re experiencing something bad, it’s a result of your internal thinking e.g. it implies your circumstances are the way they are because actually, it’s your fault and only you’re in control of it- the outside environment reflects your internal feelings and thoughts.
With years and experience of soul-searching, I realised this is not the right approach, because a true mindfulness experience will embrace and encourage the full spectrum of feelings from sadness, loss, anger, frustration, fear to joy, happiness, bliss, glee, euphoria, exhilaration and all the rest in between.
And this is what I had to tap into the last couple of days. I let myself be the sad parts, I’ve ‘let it out’, cried, felt pain, longed for a ‘better’ quality life. And I as much as I was grateful for some of the best care in the world,surrounded by love, I was really really emotionally tired, physically tired. My body has been probed, tested and failed me a number of times, lying in hospital and not being able to sleep (the joys of a hospital bed!). I’ve been in a place of turmoil inside sometimes for suffering the last couple of years and fighting a long, permanent battle. To truly feel those horrible, bad feelings happened, but it was in order to move on…
That’s when the gratitude came flooding in, in which I realised, I can really try to focus on the things I do have, rather than what I don’t have. Once again, for now, I’m focusing on the most important things to me and the simplicity of things- getting better, healing, eating lots of good food and being surrounded by my loved ones. It’s the only thing I can do- walk, don’t run, take it a step and day at a time. It also reminded me that, with COPD, things really can be fragile, it has to be managed with a lot of effort, but if you don’t, you risk episodes like this.
The main things I’ve learned are these:
- Find and maintain not just a good doctor, but one that actually cares and who will treat you well and proactively wants to find answers for you. I feel comfortable enough that I can phone my consultant at any time. He always gets back to me within the hour. It is NEVER delayed. If we live in Britain, we should also be grateful for a functioning NHS system. I’m lucky to have experienced and attentive doctors. Not just the doctors, but nurses who dedicate all of their time being selfless and looking after others. All of them have reassured me, they know just how much I’m going through scary experience.
- When the going gets tough, seek family and friends. You’ll have noticed, in most of my blog posts, I advocate a strong support network. Many COPD sufferers are at higher risk of depression (and I’m pretty sure I’ve been there), and it means you can or tend to isolate yourself. I make sure I don’t do this, because I know talking about it it is a release mechanism for me (and writing). My friends and family love me, I love them, and they help you get through it all. There are downs, but there are also UPS to enjoy with them. Besides, being back home, lets me see my parents and best friends who lives here. Thats a plus!
- Think about travel and air pollution more carefully. It is hard to say and perhaps I put my already-fragile system under too much pressure by staying in London a business trip. Last week, I already wrote a post on How to travel with COPD, and this is not to say, you can’t go anywhere for the rest of your life. But the experience has made me realise, I’ve to be much more cautious and maybe not travel while I already had an infection or reduce my time in severely polluted cities. Perhaps one week was too long. Air pollution is not to be taken with a pinch of salt, and climate change is already a public crisis, it is set to grow. We all need to be careful and take action.
- Think simplicity – no one is asking you to run a marathon. So relax your body, don’t worry about work, what other think or how much you’re suffering (as hard as that can be). The body is an intelligent being and if treated with love and care, trust that it will get better. There’s days where I’ve felt amazing and remind myself that the body’s ability to heal even having gone through the wars, it is still here, alive and kicking! Be gentle on yourself and like I said, focus on eating better, enjoying the food, seeing and feeling the progress of you getting better. I literally just woke up from a couple of hours nap, and feel slightly better already. Ah, the wonders of sleep!
If anyone has ever experienced this or has any tips, let me know! I’d love to share learnings with the COPD community around the world. Fingers crossed, I’ll be better soon!