We Can Adjust The Sails

Last weekend we looked after our best friends’ children. Normally, to survive these fun yet full-on sleepovers, I need early nights and lie-ins and multiple sneaky rests. Yet, for the first time ever, I was there for it all. No power naps needed. I was awake early making breakfast waffles, and still there for movie night. I was around for dinosaur world, and seed planting, and a bike ride to spot baby farm animals. And I even climbed winding staircases to stand atop Kenilworth castle with them. My wonderful body is currently going through a little miracle period. And I couldn’t be happier. 🙂

Something strange is going on. Something unexplained. We don’t understand why or how or what. When I was diagnosed with Pulmonary Venous Occlusive Disease in 2016, my life expectancy was less than a year, my prognosis decline, decline, decline to death. A ridiculously rare disease -with a prevalence of 1 in 10-100 million; little was known about the condition and little was understood. But thanks to a successful trial of immune-suppressants, my brilliant body has so far surpassed those scary predictions. Instead, my lungs improved, and have stayed there. For a few years now, I’ve been medically stable. And in the world of chronic illness, stability is fantastic. 🙂

But since November, amazingly, my body has improved again. There was a few sketchy months -lumbar puncture followed by Covid- but overall the trajectory has been slowly upwards. And since the warm Spring sun arrived, the change has been obvious and significant. Like a mini miracle, I’m functioning better than ever before. Yes, amazingly, wonderfully, thankfully, I am currently more able than at any time since developing Pulmonary Hypertension. I am stronger, my lungs can cope better with breathlessness, and -best of all- I have more energy coins. I can do more every day! I’m so very happy. 🙂

Miraculously, recently, I’ve been washing the car, putting the heavy bins out, changing the duvet covers. Miraculously I’ve been carrying in the shopping, pushing a trolley around the supermarket, going up and down the stairs whenever I want. I parked ten minutes away from a restaurant and walked there, I dug over all of my vegetable beds, I deep cleaned the whole house when we put it on the market. I swam in the sea in May, I carried plants as I pottered around a garden centre, I cooked an Easter roast on day three of a family holiday. And most days I walk the dogs around a 1km circuit at the park! 🙂

For the past nine years of illness, these tasks have been out of my reach. Impossible. Unthinkable. I’ve had neither the strength nor the breath nor the energy nor the stamina to do them. And all previous attempts to try, have left me gasping, caused heart damage, and required multiple recovery days. Pulling a wheelie bin once caused a week of palpitations and bed rest! 😛 These physical activities are far far far from easy. They steal my breath and leave me exhausted… but with adaptions and care they’re no longer impossible or seemingly harming me. If I sit down, break them into smaller steps, complete them over a longer time. Work slowly, increase my oxygen input, breathe through my nose. Concentrate on deep inhales and exhales, stop frequently to catch my breath, rest afterwards. Then they’re unexpectedly, miraculously kinda achievable.

Whatsmore, I currently can do more each day, and on consecutive days. A beach party Sunday, followed a Saturday of helping at a village fayre. A late dinner with my Mum, came at the end of a weekend of babysitting. And last week I put away the shopping, baked a cake and walked the dogs on the same day. Then spent the whole next day weeding and potting and planting! I can do so much more. Extra energy coins was always my number one wish. 🙂

But it’s not all glittery fairy cakes. My oxygen saturations are still often lower than normal. For years, my O2 levels have been completely normal -97%- at rest (normal is 95-100). And as long as I’m breathing in lovely oxygen, they remain the same when I do activity. However, since March, they’ve frequently been less than ideal when I’m doing nothing, and below the ‘safe’ level when I’m moving around with my oxygen. Sometimes, not always; it’s inconsistent. Yet strangely strangely strangely, these low saturations are seemingly not stopping me -too much- from taking advantage of my new increased functionality. If I go slowly and breathe in deeply, I can still walk a bit, even when my saturations are in the 80s. It’s odd.

We don’t understand what is happening or why. Whether I should be taking it easy or taking full advantage. If this is a long term change, or a small miracle period. So I’m ignoring my oxygen levels and blue lips, and instead using how I feel as the gauge of when to push and when to stop. And I’m ignoring the worries and the what-ifs, and instead allowing myself to revel in feeling a bit better than normal. 🙂 Obviously, I am still disabled. I still can’t do as much, for as long, with the same effort as ‘normal folks’. I’m not like you. But currently I’m a more able and active and stronger and fitter and busier version of me. 🙂

And I couldn’t be more thrilled or delighted or thankful. My happiness has been sky-high these past couple of months. Ridiculously giddy, ludicrously elated, sky high. After nine years of being unable to drive or mop or clean or walk or dust or dig or carry; it feels so exciting to now be sort-of able to. After nine years of being reliant on others; using my own legs and arms more is unreal. Walking my dogs makes me beam, climbing stairs at my whim still makes me grin, and getting puffy whilst digging over my veg beds makes me so unbelievably proud. Absolutely exhausted and breathless, but oh so very proud. Independence and self-worth often go hand-in-hand.

One advantage of living with a rare illness that can’t be explained, is that no one knows how your story is going to end. And thus, miracles months can, and do, occasionally happen.