The first time I saw this photograph I was truly shocked. It was May 2016 and I’d just returned from a wonderful day trip with an old friend. But instead of looking at this picture and seeing our happy smiles, I just cried inside. All I could see was me looking odd. Not like me. My clothes didn’t fit right, my stomach and arms were all chubby, and my face was rounded and wrong. It was this photograph that made me realise that I’d put on lots of weight. Turns out I’d acquired a stone in six weeks. And my lovely steroid tablets were the cause. For the first time in my life I felt ashamed of my body. 
I’d never really worried about my weight before. I was an active child, an active teenager and, prior to PH, an active adult. My job as a primary school teacher kept me continually moving, so although I adored my food, happily my weight remained reasonably consistent. But getting ill with Pulmonary Hypertension dramatically halted my busy lifestyle. Barely mobile, I now needed far far fewer calories. Only 1500 a day- according to a researcher who wired me up and shot electrical currents through my muscles. Whereas normal ladies need at least 2000 calories to stay alive, my body now needed 25% less. I begrudgingly fed Phil all my ‘Get Well Soon’ chocolates! When I left hospital, I complied with the new calorie restriction by eating smaller portions. The same food as before but less. Happily, it worked and I continued to look like myself. I’ve been a size eight, weighing 54 kg for years. But then I got put on steroids. Wonderful yet awful steroids. They saved my life… but changed me.
Over six short weeks my weight increased by 11% to 60kg! Fat was deposited on to the usual woman hot-spots- my tum, my arms and my legs. And disturbingly, it also swarmed around my chin and cheeks… yes, I developed a classic ‘moon face’! Aagh! In that first fortnight, I could actually feel my lower face changing: it became itchy and spongy. Odd! Although steroids are notorious for changing a person’s metabolism, and causing fat to deposit in weird places… every doctor I spoke to believed I wouldn’t gain weight if I didn’t eat more. How wrong they were.
My diet did not change in those six weeks. Not at all. I’m slightly embarrassed to admit, but for the past four years, I have eaten exactly the same breakfast and lunch every single day! Why vary my diet when I adore a morning boiled egg, and love a humongous chicken salad?! 😛 Although the steroids made me constantly hungry for the first fortnight… I rather masochistically tried to placate my rumbling tummy with cucumber or copious cups of tea! In those six weeks, my meals were the same, my snacks were the same, my calories each day were the same… yet the image in the photograph showed me something had changed regardless. My weight continued to creep up slowly until my steroid dosage was reduced… then it remained stubbornly around 9 1/2 stone.
I hated my new shape. I struggled to find clothes that looked alright and didn’t leave me feeling embarrassed. I tried everything on in my wardrobe, and boxed up 75% to go into storage! I bought loads of new bits off eBay, then rejected them as none fitted right. I bought a couple of dresses for a wedding, but found my old style no longer suited me. I spent hours browsing the net looking for pretty summer tops that also covered my new bat wings. I couldn’t work out what size I now was, what suited my new shape, or what outfits to avoid! And I looked awful in all the photographs I took. I’d get angry at Phil for snapping away at hideous angles… and started checking the photos he was taking. Instead of a quick selfie, I’d have to spend thirty seconds working out which angle best hid my double chin and fat cheeks! I’d never behaved like this before! 😀
I tried and tried to lose that added weight. But having Pulmonary Hypertension made it incredibly difficult. I couldn’t do exercise or increase my activity, as all movement causes breathlessness and fatigue and exacerbates my condition. (Sometime the most activity I can manage each day is climbing down the stairs). Instead I needed to lose it from reducing my calories alone. I downloaded a calorie counting app and recorded everything I ate- aiming for a mere 1500 daily, as that researcher had once advised. But it didn’t work. After a long year, after numerous attempts at calorie counting… I was still a big size ten, and weighed 61kg. The largest I’d ever been.
So as much as I loved those little white steroid tablets… I also began to hate them. As much as I was thankful and grateful that they’d magically stopped me dying last year… I also began to resent that I needed to take them. I felt so guilty that I was begrudging something that was keeping me alive, over something so trivial as appearance?
But the honest truth is, gaining so much weight broke my heart. It really did. Pulmonary Hypertension had taken so much of me already, I didn’t want it to take my appearance as well. I’m far far from a vain girl. I don’t wear make-up, I only visit the hairdresser once a year, and my hair is often pulled back in a tight ponytail. My clothes are years old, I only wash my hair every few days, and I’m happy to go to the shop in my PJs. I don’t worry about wrinkles or grey hair or spots or bitten nails. I’ve never cared much about my appearance. But I’m used to seeing me in the mirror. I’m used to seeing my big nose, my bony shoulders and my wonky chin. I’m used to seeing my knobbly knees, my little boobs and my tiny wrists. The same image has greeted me every day of my thirty seven years. So to suddenly look in the mirror and see a different face and a different body was heartbreaking. My rounded moon face didn’t look like me. The tyre around my stomach made me embarrassed to be naked in-front of my husband. Illness had stripped me of my work, my future, my hobbies… I was heartbroken that it was stripping me of ‘me’ too. An old childhood friend who died a few years ago, told me that the hardest thing about his illness was his changed appearance. At the time I didn’t understand… but now I do. Even on your deathbed you want to look like yourself. The you that has always been.
So in June, after a particularly unhealthy holiday with my friends ( 😛 )… I reloaded that calorie counter and aimed for a mere 900 calories daily. Out went the bread and the potatoes and the starchy carbs… and in came even more vegetables served with protein. Out went the puddings and fruit and snacks… and in came even more cups of tea! Amazingly I wasn’t even hungry. At times it took all of my strength and willpower to stick to the calorie limit though -eating a tiny salad at a pizzeria whilst Phil ate a feast was a particular low point! 😉 But I was incredibly determined. And amazingly wonderfully happily… after eight weeks I’d reached 54kg- my pre-steroid size. After a bit of fiddling, I’ve discovered that my body actually only needs 1350 calories each day. If I stick to that, my weight stays the same. I can eat carbs and potatoes and bread, I can eat puddings and snacks and treats- but I only have a small amount of each. Instead I eat mountains and mountains of vegetables, so I can enjoy a full plate of food within my calorie allowance! 😛 I’ve now been a consistent 52kg for the past four months. Yes I still have fat in places I’d rather it not be, yes I still have a slight moon face… but I’m so incredibly proud of myself for losing weight despite having pulmonary hypertension.
So I’m back to walking around naked in front of my husband. I’m back to wearing my boxed up size eight clothes. I’m back to looking in that full length mirror and seeing me. And I’m back to loving and being forever thankful to those little white steroid pills.
We Can Adjust The Sails 