Andy's COPD Diary

My Name is Andy and Yorkshire Smokefree asked what I would tell my younger self. I’m 52 and, like most people, I always said “Nobody will tell me to stop smoking”. Even when it was making me really poorly, I had no intention of quitting until I ended up in hospital. It was my consultant who encouraged me to reach out and get help. I’ve been smoke free for 18 months now and will always be grateful to Yorkshire Smokefree for their support.

If I could go back and tell my younger self about five typical days living with a condition called COPD (chronic obstructive pulmonary disease), I’d like to think I would have quit a lot sooner.  

Day 1:

At night, I need to sleep with a ventilator to help me breathe. My body struggles to process oxygen, so my levels can become fatally low when I’m asleep and my carbon dioxide levels can rocket. It can be difficult to get started in a morning as the reduced oxygen levels leave me extremely breathless and exhausted.

Each morning, I wake up and take a series of medications to treat my condition and turn on my oxygen concentrator. It can take me a while to get going as I try to balance my oxygen levels, with some days worse than others. For example, this morning the garage phoned to update me on my car. I had to ask if I could call back because I was having a flare up and was struggling to breathe, never mind hold a conversation!

This is a common occurrence and I really struggle with the normal day to day things most people take for granted, even planning meals. Using my gas cooker is really dangerous with oxygen running throughout the house. If I want to use a gas appliance, I have to turn the oxygen supply off for 20 minutes beforehand and wait for 20 minutes afterwards before switching it back on. If I’m struggling  to breathe during this time, I need to use my inhalers, which doesn’t always help, depending on how my breathing is that day.

Preparing meals involves moving around and standing for periods of times, which leaves me breathless and uncomfortable. On occasion, I’ll cook a hot meal, or even just a sandwich, but by the time I’ve caught my breath the food is cold, or I end up too exhausted to eat it. That means I don’t really eat that much fresh food, usually choosing between a microwave meal or a takeaway, which doesn’t help my weight!

It's the same when answering the phone, meeting people out on the street or even in the comfort of my own home. The effort spent moving from one area to another is hard enough but  combing it with trying to hold a conversation is very difficult, sometimes impossible.

COPD can be very isolating because the effort needed to do pretty much anything means I often avoid situations, keeping myself to myself and doing the bare minimum just so I can keep on top of my breathing.

The craving for a morning cigarette has long gone, but the chestiness and breathlessness hasn’t.

I just wish I’d quit years ago, before all of this started.

I’m so glad I’m still part of Smokefree, they are giving me the support to stay stopped

Day 2:

On a typical morning, I start by taking a series of medications to treat my condition, whilst also turning on my oxygen concentrator.

Today, I prepared my recycling and rubbish for collection. This has left me severely out of breath, so I had to sit down and use my oxygen cannula to help control my breathing.

Shortly afterwards, an engineer from my housing provider called to repair a communal light. I was so breathless I was unable to show him to the light that wasn’t working, I just had to point towards it. Even though I couldn’t do anything else, I still felt very rude.

Tomorrow, I have an appointment at my GP surgery, so I need to start planning today to ensure I’m well enough to attend. Before I even leave the house, I know how I’ll feel once I get back. This often deters me even attempting to go anywhere...

It’s now bedtime and I’m trying to decide whether I will need oxygen as well as the ventilator when I go to sleep.

I dread to think how much worse things would be if I continued to smoke….

Day 3: 

A typical start to my morning, slow and steady in preparation for the day ahead.

It was my over 50’s health check today. I knew it would leave me seriously out of breath due to the walking required to get in and out the surgery. Luckily, the nurse was understanding and let me go at my own pace. She came up with some suggestions that might help me with my long-term chronic health conditions, which I plan to try going forwards.

I also had to nip out to the shop, which triggered a flare up and I ended up sat in my car struggling to breathe. I’m used to these now but this one frightened me because it didn’t seem to calm down. It took about 10 minutes to get my breath back, despite using oxygen and various techniques. Shopping is an essential weekly task, but it’s such a huge effort! I need to use my mobility scooter, even though I don’t particularly like it. I feel paranoid that people are looking at me because of the oxygen tubes and ventilator mask covering my mouth and nose. There’s no way of disguising it, I just have to get on with it. At least it gets me out of the house for a short time.

I often read the posts on Yorkshire Smokefree’s Facebook page and still find them very encouraging. I wish I could persuade more people to use this amazing service. I know I would never have managed to stop smoking without these guys. That’s the reason I’m doing this diary, hopefully someone will read the post, take a moment to think about what they’re doing and of the potential long-term consequences.

Day 4:

Last night wasn’t the best, I was up most of the night with difficulty breathing. Luckily, I know to add oxygen to my ventilator in these situations, which normally helps but if it gets any worse, I’m going to have to contact the respiratory team.

Even though I’ve been out this week, I could do with a few bits from the supermarket to see me over the weekend. Luckily my friend has offered to collect my shopping, which is much appreciated. It’s so frustrating not being able to do the small day to day jobs without them turning into monumental effort!

When I think back, I knew for some time that my health was beginning to deteriorate as small, everyday tasks gradually became more difficult but I carried on smoking, ignoring the obvious! It’s easy to look at someone in my condition and think, well they should have stopped smoking, it’s their own fault! I just wish it was that easy, but this is something that’s happened to me over many years and has gradually caught up with me.  

I used to tell myself that I would put on loads of weight if I stopped smoking  and it’s this and the notion that “Nobody will tell me to stop smoking” that stopped me even trying to quit for so long. I’ve always been on the heavy side but since stopping smoking, I haven’t gained any weight, despite my inactivity, which has really surprised me.

In the New Year, I plan to attend the stop smoking group, not just for my own maintenance but hopefully to help others in a similar situation to get started. I found at the beginning of my quit journey, having someone who was interested and knew what I was going through was so helpful.

Day 5:

Last day of my diary and, if anything, it’s opened my eyes. Living with COPD has changed my entire life. The past five days have made me realise just how restricted it’s become and how my days are planned around my condition. As well as showing how I manage my condition, this diary has also made me think about where I go from here and how I can manage my condition better without isolating myself so much. This will be something I will work on and maybe go back to my respiratory nurses for support.

It’s my birthday tomorrow and I’ve been asked by several friends if I have anything planned. The simple answer is no but the truth is I’m scared that if I plan something, I might have a flare up and spoil the plans, or worse end up either in bed or hospital.

Last night was a particularly breathless night which resulted in me adding oxygen to my ventilator, again, but I just couldn’t settle. I can’t be sure, but it could have been a result of me having both my flu and covid jabs today. You see I need to be extremely careful at this time of the year, and I try and take all precautions to avoid catching even a common cold as even that could be extremely dangerous for me.

I must sound like a stuck record to the stop smoking team and within this diary, but I can’t emphasise enough how important it is to me that I share my life and struggles with this COPD! A struggle I’ll have to endure every day for the rest of my life.

Hopefully, by engaging with Yorkshire Smokefree, even after 18 smoke free months, something good can come out of all this. I really hope someone will read my posts and take a moment to think about themselves and, hopefully, take that first step by acknowledging the simple fact that they are in control and if they chose to stop smoking then that is what will happen, maybe not the first time but eventually, with support, you can also be smokefree.

Going back to the original question, “what would you tell your younger self?”. Well, I’d like to tell myself to try! Support is out there and, when you’re ready, engage with your local stop smoking service, it could be the best decision you make.

Thank you for taking the time to read my diary. I hope I’ve been able to give you an insight to living with COPD.