We have some solar powered fairy lights draped around the greenhouse in our garden. Throughout the winter months, they glimmer quietly and faintly, for just a wee hour, before shutting down and going back to sleep. However, come summer and sunshine, they are transformed. Beaming brightly all night long, they sparkle and shine, illuminating their corner of the garden. I have a lot in common with those twinkly lights. When god was giving out energy packs, I think he gave me solar powered batteries instead!Like 44% of the UK, Summer is my favourite season. Although I could attribute my preference to BBQs and dog walks and camping… actually it is the magical sun which wins it for me. I adore that dazzling light-bulb in the sky. I’m convinced that it is good for my health; a form of free medicine; a giant yellow pill that doesn’t need swallowing! During long stints of grey overcast days, my body feels more lethargic and symptomatic. Yet when the dazzling star shines brightly, my energy levels start to increase. Although I noticed a slight change in my seasonal energy levels in ‘life before Pulmonary Hypertension’, it is only since suffering from extreme fatigue that the difference between winter and summer has become more obvious.
With the exception of the odd unexplained blip, for the past two years my health has been stable. Therefore, I generally have the same amount of energy daily, so know how much activity I can do without repercussion. For the majority of months, I can dress, cook food, wash up and shower. Anything more will be using my energy reserves, and cause illness the following day. However, to allow me to live life, I do intentionally ‘go into the red’ at weekends. My body can normally manage a four hour trip or meetup, but as payment needs two recovery days afterwards. And a holiday can only be survived with plenty of time alone, complete rest days, and a full week in bed to recuperate once home. However when summer arrives, and the gleaming yellow star shines… the sun reduces my fatigue levels, and miraculously gives me bonus energy coins for the season. In addition to my normal routine, I can cope with more activities without backlash. Summer outings can happily last eight hours, and vacations can be busier. Convalescence is also quicker- I can be feeling restored after a weeks hols, within a few days. Obviously I’m still Sarah with dodgy lungs, who uses oxygen, and scoots everywhere; the sun cannot miraculously cure my Pulmonary Hypertension. But amazingly, wonderfully, thankfully, for a few short months, that glowing ball of fire allows me to do a little extra… and so feel more like the old me.
The last couple of months have been wonderfully sunny. Unusually sunny. Us Brits are more used to spending May and June wearing coats, eating picnics in cars, and BBQ-ing under umbrellas. Sunglasses and sunhats are only dug out in August. But not this year. Dark shades and straw fedoras have been staples for a while, and I’ve yet to eat a rain-soaked charred sausage. Consequently my solar powered batteries have been charging. Since the start of May, my energy levels have been slowly increasing, so compared to my ‘normality’, I’m now able to do considerably more. 🙂
Consequently my calendar has been bursting with activity. A lovely stroll with my mother-in-law around beautiful Broadway in the Cotswolds, followed by ice creams at Broadway Tower. Hide-and-seek in the grounds of Wrest Park with energetic Harry, and a much-needed chatter with Alison (and I can now identify Jackdaws, after they swarmed on our cream tea!). Collecting stones and leaves for Nate’s super journey stick, whilst following the ‘Highway Rat Trail’ at Wendover Woods. And a brilliant family day supporting my sister as she astonishingly skydived for the first time -and above my village! There have been dog walks and date nights and picnics. There have been pub gardens and shopping and sorting. There has been planting and sowing and weeding. There have been two fabulous family holidays. And there’s even been ironing! Amazing. My body has had a fantastic start to the summer. Thank you sun. 🙂
However last year also started in a similarly miraculously way… until my body became randomly ill and sofa-bound. And although there is no evidence that my exuberance last summer was to blame for that horrid blip, I will always wonder. Therefore for fear of overdoing it, for fear of another summer of two halves… since April I’ve been trying to control myself. Every day I have regular rest periods, every week I limit the number of evening excursions, every month I have an enforced rest weekend. But it’s hard. Having lived with extreme fatigue for so long, a little bonus energy is amazing and exciting and exhilarating. I’m a bouncy puppy that wants to do EVERYTHING. So it’s tough putting on my grown-up hat and only allowing myself to do extra activity in moderation. It’s frustrating to be self-imposing relaxation when the beagle part of me wants to push myself to the extreme again. I just pray that by being sensible, I won’t get randomly ill again, but will instead get to enjoy the whole summer of sun. I have everything crossed that I’ll continue to feel this well, more like the old me, for a good while longer.
Last night I went to the toilet three times… and my solar powered fairy lights were twinkling each time. They obviously didn’t get the memo about not overdoing it this summer…