Be Careful. Be Happy but In Control.
It would be easy sitting here in my man cave as I look out the window on this dismal dark and cold dreary day while watching the raindrops falling gently on the window pane – to be depressed and full of woes. To feel sorrow at my solitude – brought about by confinement to my home to keep me safe during long winter days. To ward off illness due to severe emphysema. I shake my head in a rueful no to say, even so COPD does not rule my life.
Yes that first paragraph is poetic, but true.
We really must be in control of our life if we are to enjoy living with COPD.
Reflecting on recent months, and to what has been written in personal emails from other COPD sufferers, and in posts on my COPD Facebook help group, it is clear that many google and come across the – “you have five years to live at most” – post. I do wish someone would take that down. We do need to google, and research our condition as much as possible. But also learn to throw out, even laugh at, the ridiculous. For the vast majority of us will live a long life with COPD. This year it will be 30 years since I was first diagnosed. Living proof that despite being a progressive illness, we can live very many years with COPD.
I was prescribed oxygen for mobility nearly five years ago. I am sure many looked and thought, ‘he’s a gonner’. Sadly some are not themselves in this world now. Funny old world isn’t it. When the least fit survive the longest. There is no doubt. Being positive and learning to laugh, even at ourselves is good for the soul, and our health. I laugh at myself more than others, and learned to worry less while taking precautions, and new limitations. Abiding by some rules certainly does help us live longer. It could be I am just a more positive kind of person. But I am planning not only this year. But next year already.
“What? He has lived 30 years with COPD. Is still a living breathing creature, walks and breathes heavily among us, is planning on this year, yet still expects to live next year too,” I am sure at least a couple of you are thinking. I love plans. I have a beautiful holiday planned for later this year. I have always fancied a trip to the Lake District in the UK, and fully expect to be there during late spring. Trips do take planning. Often with almost military precisions. But us at stage 4, often called end stage, can still manage many things.
End stage. How that also frightens and scares people.
The doctor may say: Sorry you have everything we can give you. We can do no more – offer no more medication. You are at end stage. This leaves the patient screaming and rushing to the door. Wondering how many days more you have to live and breathe. End stage in reality is just stage 4. The last of four stages. Many of us live 20 or more years at end stage. It is learning how to protect ourselves. What the enemy is that might in the end determine how long we live past that admission we are at stage 4. The cold and smoking are both brutal unforgiving enemies.
Here in Europe, as in the USA, there is quite brutal cold as I write on this winters January day. Temperatures of minus 30 C (-22F) have been recorded in places. Thankfully not here where I sit, although snow is expected soon. Many new to COPD have been put into panic mode after having ventured out into sub zero temperatures to find breathing has been almost impossible. I well remember the first time that happened to me. I really did think I was breathing my last, despite having oxygen on at the time.
Remember to cover that mouth and nose to make sure you warm the air before the cold air reaches your lungs.
Else sure as day follows night, you will suddenly find you cannot breathe at all well. I wear a snood to warm the air I am breathing if I really do have to venture out into the freezing outdoor cold. To stay safe in freezing conditions wear several layers to keep warm. If you use oxygen run the tubing under your clothes to warm the air coming from your supply a little – and cover you mouth and nose.
Winter illness, another enemy is rampant at the moment here in the UK. A winter cough that also gives pneumonia has stricken many otherwise fit people. The cough lasts for many weeks. How worrying is that. For that reason I stay away from all big events during winter, and do not visit my doctor unless I really have to.
For us with oxygen there is another consideration.
If we think we might be snowed in for a few days do you have enough bottled oxygen should you need it. I have oxygen concentrators in the house to supply my needs indoors. But power cuts do happen due to downed power lines. Always keep an eye on the weather. And make sure there is enough O2. Keep a full bottle in the car in case you need it also.
Should you venture outdoors always take your cell phone with you. You just never know when you might need to call for help. Of course in winter it is essential to keep your vitamin D levels good to help your immune system with a small supplement. If in doubt ask your doctor.
We can exercise indoors too. Just don’t sit in the chair for hours on end. That really does suck your health. Most of all though. Keep positive. Think of nice things. Plan ahead. When stuck in the house, like I am today, and look to be for the next week maybe, find plenty to keep yourself amused. Write, plan, take photographs indoors, paint, listen to music, dance a little, chat on the phone, do little small jobs slowly, laugh with friends, research, google, chat on copd help groups. There is a zillion things you could do if you think of it.