Stay. At. Home.

Trigger warning: I’m super blunt about death and dying. I’m not trying to increase corona virus anxiety in people who are chronically ill or doing everything they can, it’s directed at people who are still going to parties, pubs etc and seem to think they’re invincible. So maybe skip this post if you’re already anxious.

Coronavirus is serious. It kills people. It kills healthy people. So I’m going to be blunt.

Stay at home as much as possible. Nothing is worth the risk at the moment. You need food and medicine to survive, get those and then go home. Here’s why. (Edit: I appreciate a lot of people can’t work from home or have unsympathetic employers. My point is social distance as much as you possibly can within your limits)

I used to be a healthy person. I could run 10 miles no problem, I was active, had an awesome job, I was a UK size 8. Besides asthma, I had nothing wrong with me and I managed my asthma well. Then, I was in the wrong place at the wrong time and overnight my really well controlled asthma developed into ‘difficult to treat asthma’ and I was suddenly housebound for months and not able to sit on the sofa without struggling to breathe. Since then, my asthma recovered but my body didn’t and I’ve now been diagnosed with way more serious and complex illnesses. I’m disabled and can’t look after myself.

Wrong place, wrong time. One off. That was it.

It only takes one, small thing to set off a chain reaction of events. You might think ‘I’m healthy, I can fight off corona’ but illness doesn’t work like that. In fact, some evidence suggests that healthy bodies are potentially more at risk because their immune systems throw all of their energy into the first, early parts of illness and then have nothing left when it gets worse. Because they haven’t had to fight before so they don’t know what they’re doing. Healthy, young people are dying. Social distancing and isolation have proved to be effective. Why are you still going out if you don’t have to? What if you’re in the wrong place, wrong time for a nanosecond and you get it? What if you bring it home to your family?

Most people reading this will never have been in an ambulance or admitted to hospital. I hadn’t, except for when I was a baby, until I had my wrong place, wrong time moment. Now I have a few days every couple of months in hospital.

So you wouldn’t know what it’s like to be struggling to breathe, or keep conscious, actually fearing you’re going to die while waiting for an ambulance. That panic is like nothing you’ve ever experienced. But that’s what’s happening to people who are ill with corona. Or to have the sirens on in the ambulance and a paramedic ringing the hospital and giving them a profile of you and warning you’re coming in because every second counts. It’s all very medical terminology so be grateful if you don’t ever need to understand that you’re really poorly based on the way they’re discussing you, even if it’s all done with a calm demeanour.

You also won’t know what it’s like to have a team of medics meet you at the door of resus and basically start working on you before they’ve even got you to the bay. You can hear other people fighting for their lives in the neighbouring bays. A whole bunch of people stand around you and start doing stuff straight away. Someone gets you out of your clothes and into a gown so you’re exposed to a bunch of people you’ve known less than a minute, you get plugged into machines, people start jabbing needles in you, hooking you up to oxygen… everyone tells you what they’re doing but they’re still doing a lot of things at once. It’s all very calm and efficient. But it’s also bloody terrifying. And loud. Your brain literally can’t process what’s going on. Your body is falling apart. It’s intrusive but necessary.

If it’s your first time in resus, you might not know what the machines mean when they start registering, or you might not understand what people say about it when they get their readings/results and tell their colleagues. I hope you don’t ever have that experience because there’s nothing worse than hearing your O2 sats are dropping, your BP and heart rate are sky high and your body is already working overtime and knowing that things are bad. That yeah, you’ve got doctors around you, but there’s only so much they can do. They can’t work miracles.

I mean, I don’t blame you for not understanding how to analyse complicated medical equipment screens or read between the lines of what the doctors are saying. I didn’t. Until I was in the wrong place at the wrong time once and developed a couple of life threatening, debilitating, life changing conditions since. Now I’m fluent in doctor. Sometimes more than my own doctors. Because I’ve had to be because my life is on the line a lot of the time now. But this is what’s happening to healthy people getting coronavirus. They’re getting critically ill.

Wrong place, wrong time. You can catch a virus or infection from being in the wrong place at the wrong time. Like I did. You might get away with a milder version of the corona virus, although reports say that’s still terrible. You might recover from a more severe bout. But you also might die. Be on a ventilator. Not be given the choice of a ventilator at all because doctors haven’t got any left. And it doesn’t stop there. Your body never fully recovers from serious illness. You can get recurrent infections. Or organ scarring. Or a weakened immune system. Some people are more prone to cancers. Or develop illnesses like ME or autoimmune illnesses.

And the scariest thing? No one knows with corona because it’s new. We’re guinea pigs. There isn’t a follow up treatment plan. We don’t know about long term health.

My wrong place wrong time was completely unavoidable, a complete fluke, and I’m at peace with that. But your potential wrong place wrong time? Completely avoidable. Why are you going out when you’ve been told to socially distance? Why are you going on holiday? Why are you letting your kids play with other kids? Why are you choosing to expose yourself to something for even a second which could change your entire life in a minute, just because you really feel like you deserve that manicure, or you *need* your holiday or your kids are whining they’re bored?

Why, if you had control over being in the wrong place at the wrong time, and people are dying left right and centre, why on earth would you still risk it?

I mean, I know I wouldn’t. I used to be healthy too. And thought I could ‘fight’ everything off and I’d be alright. But now, opening the oven door has put me in resus in a life threatening situation. I haven’t even gone into the fact that your refusal to stay at home for a couple of months has the potential to kill people like me. Or someone’s grandparent. Or a doctor who’s trying to save other people. You can still carry the virus wherever you go even if you don’t have symptoms. Do you want to be a murderer? Because knowingly flouting social distancing is choosing not to value the lives of other people.

Stay at home. You will get to go back to your healthy lives if you do. Some of us aren’t that lucky.

How to survive self isolation/quarantine

I’m a pro at this! I’ve spent a lot of time in isolation/quarantine in hospital, because if you’re admitted with diarrhoea of an unknown cause, they quarantine you while they wait on test results and isolate you if you’re contagious. The longest was 2 weeks and the only person allowed to visit was my husband. I tend to get put in a room by myself with a hospital bed and a toilet, and that’s it. Once I didn’t have a tv, the WiFi was very patchy and blocked half the stuff (definitely no streaming) and I didn’t have any 4g. And I was in that room for a week! Because I was waiting on test results, I didn’t even feel that ill so you can imagine how bored I got. Plus hospital food isn’t great. It was a little bit like being in jail… Another side of it is I spend all day by myself at home and don’t leave the house much, which is basically self isolating!

So isolation at home with WiFi, decent food and different rooms should be a breeze, right?! Yes and no. It’s still going to be annoying, whichever way you look at it. And the worst thing about isolation is your own head. It definitely makes things out to be a lot worse than they actually are, mostly because you haven’t chosen to be in that circumstance and you ruminate on that. Here’s what’s worked for me in the past:

Get some entertainment sorted. People spend half their life telling me ‘it must be great being able to sit around watching Netflix all day because you’re sick while we all work’. Well now’s your chance to do just that! And you’ll probably realise it’s not as exciting as it seems after one day. But the best thing to do is have a range of stuff to do. I don’t watch Netflix all day. Sometimes I switch it up and watch amazon prime 😉 Different things to entertain you can include: TV series, listening to podcasts or audio books, reading, comic books. There are lots of free podcasts but your local library might also have free audio books and e books you can access via an app (mine does).

Find some other activities to do. If you’re not actually feeling ill, make this your time to learn something new or do a hobby you’ve always wanted to do! This is exactly why I learnt how to knit and crochet- I didn’t want my brain to waste away while watching Netflix. And I can take it with me when I’m in quarantine. Obviously you might need materials to do something so a bit of forward planning might be involved. But there are lots of things you can learn via YouTube. Or, do things like colouring, drawing, baking cakes, learn a language… I recently discovered that the open university has lots of free courses online and there are lots on a site called FutureLearn.

Get up and get dressed. Getting dressed just makes you feel better in general and like there’s a purpose to the day. Sitting around in your pjs might seem fun for the first 24 hours but then you just start to feel a bit fed up with life. I put on make up and jewellery most days even if I’m not leaving the house. It just makes me feel better! If I don’t feel like doing these things, I know I must be feeling poorly!

Have a routine. This is easy in hospital because everything is done at the same time. Although the frustrating thing is, it’s all done on someone’s else’s terms/when they choose. The good thing about being at home is you can choose your routine. Eat meals at the same time every day, have a cup of tea at a similar time, watch something on tv or plan an activity at a specific time. It doesn’t have to be a lot, just little things to focus on in the day.

Make the most of social media/technology. Scrolling aimlessly through social media for hours is always a bad idea. Take it from experience. You look at it and think ‘everyone else’s lives are amazing’ even if you’re the most grounded person in the world. And now it’s all about ways you’re going to catch the coronavirus and die! But social media can be a way of keeping in contact with people. I regularly just barge into Twitter debates! Or, message your friends you’ve not had time to catch up with. Use FaceTime. Write some letters or cards, or even make your own so it gives you something to do activity wise too.

Find something relaxing. Journal or meditate. I’ve never really got into journalling but I meditate every day. When you’re locked away by yourself, your brain or ruminating mind is your own worst enemy. So having a ‘go to’ stress reliever when you start to feel negative or anxious is a really good idea. Doesn’t have to be something like meditation, could be something repetitive like throwing a ball or crochet- something you can do easily to take your mind off stuff.

Have some good snacks. Yeah, you can survive if you’ve got your mountain of dried pasta and toilet roll, but the highlight of my day being in quarantine is food times. Don’t underestimate the power of a good biscuit to brighten your day!

Do some exercise. You can’t sit around and eat all day and not expect to put any weight on, especially if you had an active lifestyle before. I’m usually in one room so would end up doing laps of it for something to do. Or bed yoga (it’s a yoga you can do lying in bed, google it!). There are lots of exercises you can do from your living room via YouTube or other streaming services. Some gyms even have remote access and video sessions.

Change location. This is easy if you have the entire house to self isolate, not so easy if you’re stuck in one room. But just moving around the room makes it less hard on your brain. For example, I always sit in the chair for meals when I’m hospital. There’s usually a chair for visitors so I put that by the window or in a different place in the room and every now and then go sit there for a ‘change of scenery’. Sounds really basic (and stupid) but it really does help with cabin fever.

Keep your area tidy. As easy as it is to let magazines pile up on the floor (or whatever), keeping your space tidy helps your brain. It also gives you something to do!

Accept that you will cry/meltdown at some point. Particularly if you have to spend a long time with the same person/people. It’s going to happen. You will probably think about smothering someone in their sleep a few times. For me, it’s the elderly who shout ‘help me!’ every 30 seconds all night when they’re sundowning due to Alzheimer’s. Rationally, I know they can’t help it and I feel terrible for it, but it drives me mad when it’s been 8 hours and I can’t remove myself from the situation. It’s ok to cry or have a strop, it’s going to happen. Obviously try to not get stressed out by doing something above but if it all gets a bit much, sometimes a good cry can help! (And murder is illegal, remember 😉 )

Those are my tips for surviving quarantine or self isolation. But, on a chronic illness awareness point, remember your self isolation or quarantine is short lived. You will get to go back to your lives, for some of us with chronic illnesses, we kind of social distance and self isolate every day because our illness limits our everyday activities so much. We’re not immune to feelings of isolation or loneliness or our mental health suffering just because we’re ‘used to it’. In fact, because we have no end date on our quarantine, it’s sometimes a lot worse. I’m hoping that some people might be able to empathise more with people like me after this is all over!

Stay safe and do what you have to do to avoid coronavirus.

Part 2: a dislocated shoulder and 2 adrenal crises

Well, sort of… I managed to head off adrenal crisis number 2 before it became one! (Read part 1 first)

I dislocated my shoulder the day before in York, they popped it back in and then we made our way back over to Cumbria, where I was staying with my parents. Hindsight is a wonderful thing though. I left the hospital feeling ‘alright’. Yeah, my shoulder hurt, but it wasn’t that bad. But, neither me or the hospital had taken into account:

– steroids mask pain/reduce swelling. They’d given me a fair amount to treat my adrenal insufficiency, but it would also have helped my shoulder

– they probably hadn’t actually given me enough steroids. They only gave me them until they put my shoulder back in, but a ‘normal’ person’s body would keep making extra cortisol afterwards

– I wasn’t given any pain killers on discharge and they’d given me paracetamol in the hospital. So I couldn’t take any more paracetamol or Cocodamol overnight

All of the above meant I didn’t sleep and then my adrenal insufficiency got grumpy pretty quickly. My mum decided I shouldn’t be in that much pain still (and pain burns through cortisol) so suggested we try out of hours and 111. But they were super busy and I started feeling really weird anyway so we headed up to a&e.

By the time we got to a&e, I really wasn’t very well again. The reception wasn’t really getting the urgency of how fast I needed triaged and kept refusing to move me up the list. Which meant I ended up doing my emergency injection in the waiting room for the second time in less than 24 hours. My dad was a lot more efficient at it this time!

We managed to get to see a doctor and I got re-xrayed to make sure my shoulder hadn’t accidentally popped back out again (it hadn’t). But they wanted to admit me because I had crisis symptoms and I needed to get on top of my pain. Basically, while I was still in a lot of pain, my adrenal insufficiency wasn’t going to cope. It’s like having a hole in your fuel tank. You can fill it with fuel and the car might still run a bit, but fuel is still leaking out and it’s not going to get better and stop losing fuel until you fix the hole. So I was going to continue to lose cortisol until someone got on top of my pain.

I got admitted to an assessment ward with The Margarets (more on them later) and started new patient intake with the nurse. Basically they do some obs and ask you some questions about what kind of physical care you’ll need while in hospital. Then a doctor comes to review you so you can get your meds put on your chart.

The Margarets were very chatty (2 old ladies) and quickly gave me the ins and outs of the ward. They weren’t impressed by staff efficiency at all and said the doctors were very slow at coming round and actually doing what they said they were doing. This didn’t bode well. A&e had said they wanted me back on IV hydrocortisone and that has to be written up by a doctor. With the next dose due in the next couple of hours. Argh.

Then it got bad pretty quickly. My parents went downstairs to the cafe while I was doing new patient intake and were going to come back up for visiting hours in the next hour. Right before the start of visiting hours, I went to the toilet and promptly nearly passed out from pain and just general sudden increase in temperature. This was a bit stressful because it takes a lot for me to actually nearly pass out ie I’m usually in resus and also the new pain wasn’t in my shoulder, it was in my bladder which meant I probably also had a UTI. So I did something I’ve never done before and pulled the crash alarm.

The crash alarm sets off an alarm (obviously) and you get a lot of people running your way fast. Usually it gets pulled by a member of staff when someone is in some kind of arrest (like on TV). Technically I shouldn’t have pulled it but if I’d have just pulled the disabled emergency cord it could have been 10 minutes before anyone came to my rescue and I needed help fast. I said about my adrenal insufficiency and how I needed 100mg HC immediately but no one had a clue what that was or who I was. As far as they were concerned, I was still breathing so it was a false alarm. Two nurses helped me back to bed and dumped me there without my call bell.

I started to have a panic then. Bearing in mind I’ve got my arm in a sling so can’t manoeuvre very well anyway but now I also had really bad abdo pain, I was actually pretty stuck. I couldn’t move. So I cried. The Margarets jumped into action (as much as ladies on oxygen and IV drips can anyway) and started shouting for nurses and pushing their call buttons. My parents also appeared on the ward at the same time, saw me sobbing in a foetal position and my dad went to shout at someone.

Then a bunch of amazing coincidences happened. The consultant and her junior for the day happened to be at the nurses’ station when my dad went to it, and that consultant also happened to be one of two endocrinologists who work for the trust. It was a Sunday and she was in capacity as medical consultant so it was actually a miracle that she also happened to be an endocrinologist working that day. Overhearing what was going on (my dad has got good at telling people about adrenal insufficiency) she came straight away, I explained what had happened and that I wanted a stat dose of IV HC and she said very matter of factly ‘yes, that’s a perfectly reasonable request, why don’t you go get that NOW’ to her junior. Then said she’d come back and review me properly later but wrote my IV doses on my chart, including one that if I asked for it, they had to immediately bring me IV HC. There were a few sheepish nurses after that, but, to be fair, if you don’t know about adrenal insufficiency, you’re not going to know how fast you have to move, and I was a new patient.

The Margarets, in case you haven’t got wind of what they’re like by now, *loved* this little bit of drama. It made their day. But it meant they wanted to know everything about me, my life, why I was from Coventry, demanded to see photos of my husband…

The doctor came back and we had a really good conversation about me/my endocrine conditions. Something which a lot of people find difficult to understand is that I don’t have anyone besides my own endocrinologist who knows as much as I do about my conditions. A lot of them are rare/obscure and hard to get your head around. So the fact that she was able to immediately understand, give me some options, and then tailor them all to me was huge. Especially because I’ve never had a dislocated shoulder and infection at the same time- I was feeling out of my depth and no idea what I needed. She charted some decent pain relief, regular IV Hydrocortisone (and made sure everyone knew how important it is to be on time) and wrote up some antibiotics for the infection I had.

The evening and following morning was spent in a blur of good pain killers, IV HC and trying not to strangle The Margarets for being racist/homophobic. To them, someone coming from a town 12 miles away was considered a foreigner, let alone anyone who ‘looked’ foreign. And this was the day after Philip Schofield came out as gay, which meant they were boycotting ITV. Another review in the morning from a different doctor and I was allowed to go home with prescriptions for pain killers (tramadol and paracetamol) and antibiotics.

If the karma gods were actually being reasonable, you’d think that would be it, right? A dislocated shoulder and bad UTI are enough for anyone to be getting on with? Nope. There’s going to be a part 3!!