Oxygen changed my life, but it was hard to get used to
Diz has been using oxygen for 4 years, but it took her a long time to decide to try it. Now, she's feeling much better, and her quality of life has hugely improved.
I've had sarcoidosis since I was a medical student, but it started to affect my lungs when I was about 26.
I’m 75 now, and since then, I’ve had relapses much of my life. Steroid treatment used to work, but now my symptoms respond less well and I'm very breathless.
For the past 4 years, I’ve been using oxygen therapy.
I developed pulmonary fibrosis, which gave me a whole new set of difficult issues to deal with. I was in and out of hospital with chest infections and respiratory failure.
During one of those admissions, I shocked to find that even with mild exercise, my oxygen levels were in my boots.
My doctor suggested oxygen therapy, but I was so resistant - even though I'm a doctor myself!
I felt it would be a badge of my poor health, and that tubes going into my mouth or nose would label me in public as vulnerable.
Once you can finally get over your doubts, the benefits are so resoundingly clear.
I knew I was being illogical but the emotional aspect of oxygen was quite something else.
It took me a long time to take it seriously
I was told that not being on oxygen was putting a serious strain on my heart, so I decided I had to try and take it seriously. That took quite a long time.
The decisions I faced were a bit like the ones that John is facing at the moment.
It was hard to get used to. It took me about 6 months. But with support from my husband, I finally began to get on with it. I started off using it just at night, in the privacy of my own home. Then I eased myself gradually into using it outdoors, at my own pace.
In the end, it was wonderful
Now, I have a portable oxygen concentrator on wheels that I use for things like shopping or getting out and about - it looks like a little shopping trolley on wheels. It can go in a backpack for country walks.
For nighttime use at home, I have a bigger static concentrator.
In the end, it was wonderful and changed my life. And I couldn’t believe how readily everybody accepted it.
From that point on, it was easy. I couldn’t believe how much more I could do, or how much faster I could do things.
My quality of life has hugely improved, and I'm now able to enjoy socialising with my family and friends at the cinema, theatre, concerts and on trips with my husband. My grandson now calls me 'Supersupergran'!
I'm retired, so I never needed to use oxygen in my working life. But I understand that if you're still working, there would be are additional worries about fitting oxygen therapy into your working life.
I don’t think my story is unique
I don’t think my story is unique. Oxygen therapy is such an emotional subject, and being resistant is a very common reaction. People can be really worried and feel embarrassed, but it has the biggest upside - making you feel so much better!
And once you can finally get over your doubts, the benefits are so resoundingly clear, you begin to wonder what took you so long.
Will I benefit from home oxygen therapy?
Home oxygen therapy helps improve persistently low blood oxygen levels which place a strain on your heart. Find out how home oxygen therapy helps and who might benefit from it.