We Can Adjust The Sails

When I lived in the world of the well, I rarely saw a doctor. I needed sat nav to find my local GP’s surgery, and I had no clue how many hospitals were dotted around Oxford. I didn’t know what a phlebotomist did, what echocardiograms were, and biology was just a school memory. I’d feel self-conscious baring my swimsuit body, and I was even scared of blood tests! But all that changed when I developed Pulmonary Hypertension, and became a fully paid up member of the chronic illness world. I can now understand the lingo, have stood naked infront of many, and I no longer flinch at long needles! And my diary is now full of medical meets. Full. Appointments, consultations, check-ups. Tests, tests, tests! It’s intense, it’s constant, it’s never-ending. It’s a treadmill without an off switch. Since diagnosis, I’ve never gone longer than six weeks without being prodded or jabbed or made to breathe into something… until now. Lockdown has allowed me a well-needed hiatus from that life. 🙂

When first ill, the treadmill of chronic illness was slow. Manageable. Occasional appointments with months in-between. But with each passing year, I’ve gained more doctors, more drugs, more diagnoses. More appointments, more check-ups, more tests. Now, seven years down the line, the treadmill is fast. Every month if I’m lucky, every week if I’m not, I have to have vials of blood taken at my local GP. I’m under the care of four hospital departments who all test me and assess me every six months -or every few weeks if I’m having a blip. There are ad-hoc tests dotted throughout the year, and ad-hoc reviews with my oxygen nurse, pharmacist and GP. There are oxygen deliveries, drug pick-ups, drug drop-offs. Plus phone calls, emails, questionnaires. And of course the normal dentist, gynecology and opticians appointments. My diary is full of the medical world. I can’t escape the treadmill.

But when the coronavirus started its rampage, that all stopped. Abruptly. At my last PH appointment, in March, my consultant advised me to “go home and stay there”. He was worried, I was worried. He told me to avoid everyone and everything. Especially hospitals. Hibernate… and hope everything stays stable for the next few months. So that’s exactly what I did. With high coronavirus transmission rates in hospitals, the treadmill of appointments and tests and checkups has been kinda paused. Halted. Temporarily put aside. Only a skeletal care system is currently being offered. Scheduled hospital check-ups have been changed to short phone calls. Normal issues are being temporarily put on hold, and instead only urgent problems are being addressed. Likewise, GP consultations are now taking place over email or phone. In the absence of any tests, it has been down to me to self-monitor and even self-diagnose. My inhaler was increased at my request, oral thrush medicines prescribed at my request. I was even given permission to stop my monthly blood tests, even though they’re a requirement of my medication. And thankfully, my disease has remained stable, so I’ve been able to avoid any emergency care. Avoid any medics.

And it’s been both wonderful and awful. In the early days, the need to avoid hospitals and doctors was scary. All of a sudden, the wonderful NHS, which had been my saviour for seven years, now became an almost enemy. The hospitals felt like danger zones. The nurses and doctors possible assassins. It was frightening. Although I avoid A&E and GPs and my consultants unless I’m in serious trouble… I’ve always felt very reassured that all would be there if needed. An emergency parachute, a safety net, an extra back-up rope. So to suddenly feel these were out of reach -I was on my own- was hard. Terrifying. I didn’t want Phil cycling or doing precarious DIY incase he hurt himself. I took to using my static oxygen concentrator outside to reduce the number of portable canister deliveries. I started monitoring myself more closely, keeping my activity level up, even cleaning my teeth for longer. It felt very reminiscent of when Phil and I lived days away from healthcare in Ethiopia. We needed to fend for ourselves. Play nurse and doctor and pharmacist. Look after each other and cross our fingers. This felt the same. The wonderful NHS was out of reach.

But on the other hand, it felt soooo good. Liberating. Freeing. Seven years of constant appointments and tests is overwhelming. Full on. At times, suffocating. It’s an increasingly quickening treadmill with no emergency stop button. No way of escaping. And no option to just pause, for fear of everything collapsing. Furthermore, being a chronic illness patient sometimes feels like I’ve lost control over my body. Like I’ve lost my power, lost my privacy, lost my chiefdom. In exchange for keeping me alive, I now have to do what they say, when they say it. Cope with the pain and the discomfort and the embarrassment. Ignore the lack of privacy or dignity. I get prodded, I get jabbed, I get stabbed. I get squeezed, I get pressed, I get man-handled. They weigh me, scan me, make me lie in claustrophobic tunnels. Hold your breath, breathe, hold you breath, breathe. Take these pills, try these drugs, experiment with these meds. I’ve stripped off in front of more medics than I want to think about. At times it’s feels like my body is no longer my own. I share it. And although I accept that’s the price to pay for living past my sell-by-date, it doesn’t mean it comes easy. So I shield my emotions and just get on with it. But on occasion, I have burst into tears after being made to lie naked in front of yet another stranger. So it has been comforting to be granted a hiatus from that world and given back control over my body. For the first time in seven years, I don’t have stab marks and bruises on my arms!

But the treadmill will soon be restarting. Blood tests this week, hospital check-ups in September. Although it will be reassuring to get an accurate picture of my health. Although I’ll breathe easier when my NHS safety net is back under me. I’ll miss being chief-in-charge of my body once again. This brief re-glimpse of the world of the well, has been a real silver lining of lock-down.