Sometimes life throws you curve balls. We can be happily swimming along the river of life, and suddenly the waves start battering us, rocks stand in our way, crocodiles eye us up for dinner. Life is hard for a while, we struggle to keep our head above water, we desperately doggy paddle to avoid the sharp rocks, we hide from the crocodiles. And this can go on for a long time, until we’re tired, until we’re weak, until we don’t think we can keep going for much longer. But then suddenly life gives us a break. It throws us a lifeline as we swim down those choppy water. It allows us to float easily for a while, it pulls us along in the right direction, keeps us away from the rocks, protects us from the crocodiles. Life gets better and easier and happier. Whatever the storm to be faced, at some point a lifeline could be thrown. And they say it often happens at the darkest points.
March was one of my darkest points. Back in March I was rapidly declining. Struggling to breathe, barely able to walk, low oxygen levels, weak and exhausted. Back in March I was given my new diagnosis and poor prognosis. No new medicines, nothing further would stop the decline, lung transplant was the only hope. Back in March I was needing to rest all day. Showering was effort, lying down for hours, no dog walks in months, unable to do chores, reliant upon Phil. Back in March I imagined a summer of lying down, a summer of breathlessness, and scarily a summer even more declined and poorly than I was then.
But then something amazing happened. I was thrown a lifeline. I started taking steroids, started using oxygen, and everything started going rosy. I stopped declining. I stopped getting weak and breathless. I started to get stronger again. I’ve now plateaued and stabilised at a happy level. I’m obviously reliant upon oxygen, but with it my strength and activity levels are not too far off my strongest point last summer. As the months have progressed, I’ve been able to do more and more: Walking around the the local Co-op without my scooter, putting the washing on the line, lifting the same weights as before the decline, holding Lottie’s lead as I walk her for a couple of hundred metres, cooking more than one meal in a day, staying awake until midnight playing a game with the family, making cups of tea for visitors and carrying the tray, walking up the stairs in one go. My weekdays are now almost back to my pre-decline routine: housework, exercises, dog scoots. And my weekends are for fun and making memories again. I’ve even started having the energy for the odd mid week evening excursion- pub trips, meals out or visits to the cinema.
So this has been the summer I wasn’t expecting to get. A bonus. A surprise. I have been thrown a lifeline and have had an unexpectedly strong summer. My favourite season as I love being outside, enjoying the sun, admiring the flowers and listening to the birds arguing. Summer is lying down reading in my garden and daily BBQ dinners. Summer is lemon G&Ts, homemade elderflower cordial and ice cold Coca Cola. Summer is dog walks past the crop filled fields and sunbathing on the cool grass. Summer is eating food from our vegetable patch and drinks in the pub garden. Summer is marrow, salad, marrow, salad, marrow, salad. Summer is watching the local parachutists tumbling and “as much as you can eat” picnics. And this year summer is watching the Olympics for hours at a time! Campervan weekends, nights in hotels, day trips. I’ve loved it all. Miraculously I’ve stayed well enough to enjoy and to make the most of the summer. I am so thankful. When you get through the latest curveball, when life throws you a lifeline for a while (especially if it is unexpected).. then everything seems more special and very much more treasured.
Everyone faces curveballs in their life. So it reassures me to think that whatever the storm to be faced, however dire the future may seem, at some point a lifeline could be thrown. However I know that when I’m in the midst of the choppy waters, there are the odd days when it is hard to keep positive and hopeful that my lifeline is coming soon. PVOD is characterised by dramatic declines that the doctors cannot stop, so I know that at some point soon my lungs will struggle again, and my health will spiral down. I just hope I can remain strong and positive at that time, and keep the faith that when the river is at it’s wildest, when the crocodiles are eyeing me up again, a lifeline might appear. And hopefully the next time, the lifeline will be my call for transplant.