We Can Adjust The Sails

At the weekend I turned my central heating on for the first time. I debated whether to take that significant step for a few hours, before eventually my shivering body and blue fingers convinced me it was time. It was the day. It couldn’t be put off any longer. So I did. And although it was wonderful to no longer have icy toes, and to see the colour return to my digits… it made me a little wistful. Because clicking the controller switch to “on” means the heatwave and sunny days are now passed. Firing up the boiler means the camping trips, ice creams, sunbathing sessions and BBQs are all over. Listening to the clonking radiators means it is now officially the end of Summer. Goodbye magical yellow sun, I’m going to miss you.

I normally love Autumn. The garden is easier to manage as the weeds slow down their incessant takeover, and the watering is no longer a daily chore. Facebook becomes filled with positive fresh starts; children in over-sized school uniforms, and friends declaring their marathon ambitions. My evening TV schedule is spiced up with exciting new programs, and familiar heart-warming classics, like ‘GBBO’, are back. Our summer duvet gets replaced by an enormous fluffy thick one, and my winter wardrobe of comforting woolly jumpers is retrieved from storage. The village looks beautiful, with its mass of red and orange and yellow trees. And I have nights and nights and nights of board game fun and fights ahead of me. I normally love welcoming in Autumn with it’s different rites and rituals. Except this year… I’m not quite ready for summer to end just yet.

I’ve loved the summer of 2018. The gleaming sun and scorching heatwave were magical for me. With my miraculous medicine, my solar boost, my bonus prescription… amazingly I was at my strongest and healthiest since developing Pulmonary Hypertension. I could do more activity each day, needed less recovery time, and even required less oxygen. I could tick off jobs, do multiple activities weekly, and cope on some full-on holidays. For a few fabulous months, I actually felt like a ‘semi-normal’ person. But then in the past few weeks, the grey clouds have started rolling in, the thermometer has crept back down to the mid teens, and the boiling sun has headed down under. Summer has waved goodbye, and Autumn has made its entrance. And so consequently, my super solar powers have deserted me. They’ve gone. Upped and left. I’m no longer ‘Solar Powered Sarah’. Instead I’ve returned to my previous ‘normal’. My pre-sunshine state of health. The me of Autumn, Winter and Spring. I’m back to the old me.

So I’m once again feeling more breathless and needing more oxygen. I’m once again shivering and freezing. I’m once again feeling fatigued after just a few hours of activity. I’m back to needing two recovery days after a trip. I’m back to not always being able to wash or dress or cook. I’m back to flittering in my sleep, and so awaking feeling yonked. Don’t worry, I’m not ill, I’m not deteriorating, I’m not going downhill… I’m just back to being me again. My previous normality. The me of most of the year. I’m once again Sarah with PH… but without her magical solar panels.

So I feel kinda sad, kinda melancholy, kinda down. I guess I’ve got the post-holiday blues. Turning on that central heating, was accepting that the medicinal fireball in the sky is gone for another year. Listening to those creaking radiators was acknowledging that my bonus extra energy is not returning for another nine months. Warming my clothes inside was admitting that my health today, is my normality again. So yes, I feel a little glum. It’s kinda hard to wave goodbye to Summer, and welcome in Autumn. 🙂

But, as always, I’m trying to adjust to my new reality, to accept my new normality, to remain thankful for everything I can still do (even if it is less than a few weeks ago). I’ve thinned out my diary so it matches my current health and capabilities. Less weekends away, less activity each week, less hours out of the house. More recovery days, more PJ days, more sofa days. I’m trying to remember to use my oxygen every time I move. I’m trying to not feel disheartened or disappointed when I can’t get washed or dressed. We’ve changed the destination of our upcoming holiday so it isn’t as far to travel. And I’ve started arranging meet ups and fun days out that are less tiring, shorter and warmer. A fortnight ago it was a board game and chocolate sleepover! (I won ‘Ticket to Ride’ for the first time! Woo!).

So it’s goodbye Summer, hello Autumn. Goodbye superpowers, hello normality. Goodbye blue fingers, hello cosy house! 🙂