The 'C' Word

-I am not a medical professional, I am someone who hasn't finished my degree, with a bit of a Yoda obsession, and so I direct you to the World Health Organisation [very professional, very medical] for accurate information re scary virus- https://www.who.int/emergencies/diseases/novel-coronavirus-2019 - 

It’s taken me two months to write about the big c word. And its hard for me to write about the illness that’s sheltered me at home, meant I can’t enjoy my island, volunteer, or consider returning to work. That’s meant I’ve had nothing to distract me from being acutely ill in my own right, or the fact that thousands of people are dying every day, and there’s nothing I or anybody can do to stop it.

I am an empathetic person- almost too much of an empathetic person- people’s pain hurts me, I want to change the world so that people aren’t suffering, so when a global crisis of this scale happens, my heart hurts. When I’m told I’m at huge risk, my head hurts.

And where was I when this all kicked off?

In typical fashion, I was in a hospital bed, waiting for transfer to see specialists.

That’s off the cards then.

My little rural hospital has had to try their best with me for the past few months, with me in a fairly poor state, condition unknown, highly at risk of covid-19. Brilliant! Just what we needed!

Just before lockdown, and just after I was discharged from hospital on ‘release’ in the hopes my specialist bed would magically become available again (spoiler, it didn’t, the doctors are a wee bit run off their feet at the mo) I nipped into the shops for my mam. To the people pushing me, a vulnerable person, out the way with their trollies to get to their bread: I hope you step on something sharp and pointy. Come on guys, it’s not hard, I have a tube sticking out of my nose! You’re the reason tesco had to put a limit on items and I’m not happy. I know you were all panicking, but I bet every single one of you has been allowed out the house over the past nine weeks too.

The first three weeks of lockdown were in and out. I slept 20 hours a day, I woke up to change my feed, watch a few youtube videos, done.

The next week I decided to take up cross stitching. I made a baby yoda. I slept 20 hours a day.

At some point, a district nurse arrive to take my regular blood tests, and I came downstairs to find a nurse in a surgical mask and a white disposable pinny-apron from the hospital, although I was not a covid patient, was this the level of PPE this nurse had access to on her home visit to a high risk patient?

The week after, I decided that the first baby yoda wasn’t enough; I made another baby yoda- but this baby yoda had a feeding tube. Iconic. Inspirational. He took a fortnight to complete. By this point, maybe a trip to the back garden wouldn’t kill me, even if that wasn’t strictly in the shielding guidelines.

I can’t go for a walk anyway, nor do I have the energy to, but I would like to. And being confined against my will, even though I am too sick to *anyway* makes me feel utterly hopeless. I do not doubt that there are hundreds of ‘shielders’ with a history of mental ill health who are in crisis at the moment, especially if they live in tenement housing and have only been able to get outside once or twice a day.  

From that trip into the garden, things have gotten better and more hopeful for me. My days have gotten longer, my days have gotten better. I’ve lost my feeding tube a few times, these things happen. Had I been able to get away under normal circumstances, maybe my symptoms wouldn’t be as bad, or maybe I’d have even had surgery by now. My dietician has worked out that I can tolerate a pre-digested [peptide] feed better than the standard feed, so has ordered me in these.

I now don’t know if I’ll be seeing the consultants in person, or if it’ll be telephone, or video, or where or what or when. I don’t know if it’ll be another round of testing, or surgery, or if I’ll be seen quickly or on a big list of patients as there’ll surely be.

I don’t know if I’ll be well enough to go back to university in September, or if I’ll have to wait a bit longer and defer another year, because I don’t want to risk going back until everything with me is under control. [and as the team here will admit, we don’t know the full extent of what’s going on with my insides just yet!]

There is so much unknown and this left me hiding under my bed covers. Each day has to be taken as it comes, and most of them aren’t great fun.

I know that lockdown is hard, and that kids need to be in school, and that the economy is slowly but surely collapsing. I for sure want something else to do than sit about at home waiting for my condition to get worse.

I know there’s a looming recession and that the world revolves around money and that’s what’s important to the world.

But also, over 33,000 people have died in this country alone. That’s the whole of Shetland, and then a few thousand more. Your family wiped out in months, and there’s nothing anybody can do but watch as it rips through countries indiscriminately. Our hospitals and care homes could have and should have been better prepared for this monstrosity, and NHS charities and donations shouldn’t be buying PPE. Give our care workers and health staff a pay rise they deserve, not a wee badge.

I was disgusted watching the UK briefing on Sunday as the English working class were told to go back to work while the upper and middle classes are still to be protected by furlough and their offices can cope with staff working from home. Construction is of course one of our most basic pillars of infrastructure, and the work is vital, you can’t catch many builders working from home. But so soon after the curve shocks me so deeply and genuinely, because literally nothing is stopping the virus and our services can so quickly be overwhelmed. we had the most warning across Europe, and still somehow ended up with the highest number of deaths.

When all is said and done, putting the regular treatment of disabled people on hold seems a bit pointless, when the result was as it was. When you can garner this high a high kill count, why not just overwhelm the services in one sweep, and then blame something or someone else, introduce private healthcare and promote it as the saviour? Why pretend that we the ‘vulnerable’ matter so much that we need to hide in our houses, when you didn’t even prepare the institutions that are designed to care for our every need?  

The virus is devastating, but failure to prepare, and jaunty ‘wash your hands!’ adverts are worse. Lifting restrictions this early on is a silly move.

We’re angry, lost, and scared. 

I don’t care about the prospect of stocks crashing when people are dying and everyone is helpless.

Stay home [if you can], and stay safe x