Venturing Out After Shielding

Since the end of February, I’ve not really left my parents’ house. I’ve been in the car for a drive, gone to the top of a common on the local Lake District fells (about 10 minutes away) and meandered down our Lonning (Cumbrian word for lane), but I’ve not been anywhere near anything like shops or medical centres or the post office. I’ve literally been in the middle of nowhere where pretty much the only humans I’ve seen, besides my parents, are the delivery people who put things in the shed and always have a nose through my bedroom window while doing it!

But tomorrow, I have to do some blood tests, so I have to go in a different building and see some actual people without the window between us!

I’m not sure how I feel about it really. It’s been 4 months since I had any real human interaction, or have been anywhere besides my parents’ house. That’s a bloody long time. Anyone would feel anxious if they’d been isolated that long and then suddenly expected to function in society. Let alone with covid lurking! Especially as the whole reason I’ve been isolated is because I’m trying to avoid catching it!

However, things can kill me quite easily anyway because of my adrenal insufficiency. And I need a blood test for my endo. So off I go! And it’s at a GP surgery who will be all over infection control. I think if I had to go to the shops for my first little adventure out, I’d be a lot more stressed. And I probably will be when I eventually do go! But the thing is, what I’ll be doing tomorrow as a precaution is essentially what I used to do when I had outpatients appointments before covid anyway! Eg take only what you need, carry hand sanitiser, don’t touch things you don’t have to, shower and change clothes when you get home. I even used to wear a scarf so that I could pull it over my nose and mouth if anyone coughed near me. The only difference is I’ll have to wear a face mask all the time. So in a lot of ways, a lot is the same for me because I’ve had to worry about catching germs for a long time.

I’m still a bit nervous/anxious though. But also it’ll be interesting to see how people are actually living at the moment- I’ve only seen social distancing in photos or on tv. I’ve not spoken to anyone except via a screen on social media or FaceTime. So there’s also a bit of curiosity there too.

Anyway, fingers crossed I don’t contract covid from my very brief trip out tomorrow! And hopefully it’ll be ok!

I’m still here

It’s been a while since I’ve written a blog and I’ve had a few people/followers message and ask if I’m ok (thank you 🙂 )

A lot of the reason for being so quiet is one of the most painful things for me since dislocating my shoulder has been anything involving using my fingers, like typing on my phone or the computer (and I hate voice transcribing). Or even holding my phone hurts. And crochet did for a long time! Something to do with compressing nerves (or something), but with the whole covid thing, I couldn’t get it checked and it’s been slow healing. But I’m getting there now! Still a while before long blog posts though. And between pain, normal brain fog day to day stuff and trying to taper my steroids, I wasn’t really with it for a few months.

Which brings me to corona virus. It’s been extremely stressful for me. It’s been stressful for everyone but I also literally just had an adrenal crisis the week before we started getting daily briefings from our PM (ie it all got bad fast here) and I was still trying to heal my shoulder.

The additional stress came from our government and media essentially reassuring the general public by saying ‘it’s ok, everyone who dies tends to have an underlying health condition anyway’ and ‘if you’re healthy you can have a ventilator because we won’t be giving them to people who’ll probably die anyway, like the ones with health conditions’. The Prime Minister basically quoted Lord Farquaard from Shrek when he said ‘some of you will die, but that’s a sacrifice I’m willing to take’ (ok so what he actually said was ‘many more families will lose loved ones before their time’, but I didn’t find any of his speech reassuring)

Rationally, I know how the media hypes things up. But I’ve also had *so* many terrible experiences in hospital where people have almost killed me on a day when the NHS was normal, let alone in a pandemic. My worst fear in general is being unconscious or on a ventilator because I can’t advocate for myself if I’m unconscious… I’ve said before, there’s been discussions about me potentially having PTSD, and this definitely started to surface. Along with the fact that no one knows how to treat my adrenal insufficiency on a normal day, let alone with a new, deadly virus which no one has any experience in. Endocrinologists couldn’t agree on what to do, or even how much at risk we are, and there was so much conflicting advice but ultimately ending in ‘just don’t catch it’. It was a nightmare.

And, obviously, having AI, means stress affects me in a very bad way anyway. So I was pretty much trying to get through every minute of the day one minute at a time. Now there’s been some guidance and we’ve been told what to do, but it’s completely different from how I’d usually manage it, and it’s only just appeared in the last couple of weeks. Which is good to know but terrifying at the same time. Realistically, if I got it, I’d be in hospital. I need hospital for stupid things like opening the oven door and the heat getting me. Or a normal UTI. So I’m doing absolutely everything I can to avoid this virus.

So I’m still here. I’m still extremely anxious but it’s a lot better since we’ve been on lockdown. Problem is, the schools are supposed to go back on the 1st June and my mum’s a headteacher. The current guidelines the government proposed mean it’s not safe for staff to be in school (and pupils) but they’re expected to get on with it. Plus lockdown just seemed to get lifted overnight and people are already forgetting things like social distancing. Lots of things which are making me more anxious again…

On the plus, I’m currently isolating at my parents house in a rural place. Which means I can go to a field or the fells nearby and not see anyone. With movement restrictions being lifted slightly, it meant I could get in the car yesterday and go to a common in the hills about 5 minutes away. It was the first time I’d been ‘out’ anywhere in 11 weeks and it made a huge difference mentally!

Everyone’s lives are on hold. But on top of the normal anxiety everyone has right now, I feel immense pressure to not get sick, even ‘normal’ sick, but especially not coronavirus sick.

This post has taken me about a week to write, with my slow typing so enough now. I hope everyone is keeping as well as they can be!

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!!

A dislocated shoulder and adrenal crisis

This is probably going to be a blog post of many parts. Partially because it was a pretty eventful few weeks, but also because using my phone for a long time hurts my shoulder and I’m probably still a little bit stoned on pain killers so will likely not make much sense!

My husband had to go away for work, which meant I had to go to my parents’ house for 2 weeks so they could look after me. My adrenal insufficiency means I can’t stay at home by myself and I wouldn’t be able to look after myself for that long anyway. So off I went to live at my parents’ in Cumbria for 2 weeks so that ‘if anything happened in an emergency, I’d have someone to help me’.

Good job really!

Mum and Dad had already arranged to babysit my niece and nephew on the Saturday in York, so I went too. Sounded like a fun day out! I’d not seen my brother’s latest house in York, so when we got there and my niece said she wanted to show me her room, I followed her through the kitchen and into the hall.

What I should have perhaps realised is that me and Jenna share the same clumsiness genes. And she’s only two, and was very excited to show me all of the things in her house. So instead of predictably continuing to climb the stairs once she’d started them, she decided to jump back down and show me the bathroom. And to be fair, I wee a lot, so her telling me where it was was quite apt really! Me not being coordinated either, didn’t have anywhere to go despite already moving so I somehow managed to pull her out of the way so I didn’t actually fall on her and fell into the wall instead. There was a little bit of a pop as my shoulder dislocated itself and I kind of slumped onto the stairs.

I’ve actually dislocated the same shoulder before skiing (far more dramatic!) although it was my brother who tripped me up that time! Basically, if you’ve never dislocated anything before, it starts off just feeling like your arm’s about to fall off unless you hold it. And then everything starts to really bloody hurt as the muscles and tendons try to pull the joint back into the socket. It’s one of the most painful things you can do. Unfortunately for me, my slumping spot was right next to my brother’s drying washing on the radiator and I knew heat was definitely going to make it a lot worse fast. And I was still wearing all of my outdoor clothes still.

But, despite the increasing pain, I knew I had to jump onto my adrenal insufficiency quickly. When you get injured, your body can go into shock and a whole bunch of hormones fire up to try to prevent that. One of which is cortisol, which you don’t make if you have adrenal insufficiency. And if you don’t replace it fast enough, you can have an adrenal crisis, which is life threatening. Jenna, to her credit, once she’d got over being abruptly pulled to one side, was very good! I very calmly said to her ‘can you go get grandad please and get me my bag?’. And she did! Then she stood calmly out of the way and watched what was going on.

In my bag is an injection kit, which is what gives me the extra cortisol I need to keep alive in these kind of situations. But it’s not like an epipen- you have to assemble a syringe, measure up liquids, mix with a powder, draw up a certain amount of liquid, get rid of air bubbles and then stab me with it. It’s a faff even if you’re well practiced. It’s even harder if you’ve never done it before, which my dad hadn’t. And I clearly couldn’t do it myself because I was trying to stop my arm from falling off!

So my dad started trying to do it and I decided to ring the ambulance. Except there was no bloody signal in the hallway so we had to find a phone which had signal. I wasn’t going to give my brother the satisfaction of dying on his pile of washing though, so I stuck with it, explained to the very good dispatch what had happened and could she put it on blue lights, which she did. Also while trying to talk my dad through the injection.

By now I was really struggling to stay conscious. So in my head I was thinking ‘dad will sort the injection and that will help’. Dad went to hand me the syringe but there was no liquid in it and i have to admit that’s when I thought ‘oh Jesus, this could actually end really badly in the next 30 seconds’. To be fair to dad, you have to angle the syringe at the most stupid of angles to be able to get the liquid in it, and he wouldn’t have known that until he tried to do it for the first time. But it did mean he had to go back 3 steps and I really needed the drugs! He was a lot better at it when he had to do it again the next day (blog post number 2 of this saga!!)

It was at this point that I could hear sirens, dad got the injection sorted and I stabbed myself with it. It doesn’t work instantly but it works fast, so it was a relief to get it.

However, despite the ambulance dispatch knowing all about adrenal crisis, the paramedics did not. Their first response was ‘oh we got told you were having an adrenal crisis’ and their second was ‘and your shoulder isn’t dislocated unless you already put it back in?’. Wrong on both counts. Then they wandered off and left me still half passing out on my brother’s washing!

(maybe skip this bit if you don’t like death talk) It’s weird what you focus on when you’re half dying. Whenever I’ve been in situations like this before, I’ve got through it by focussing on getting to a point where there’s ‘enough’ help sorted. You can’t willpower your way out of an adrenal crisis, just like you can’t a heart attack. But, I do know that my bloody stubbornness has kept me alive so far when my blood work says I should be in a coma but I’m still sat up having a joke and a chat. So my instinct to survive must be strong.

But I genuinely did think I was going to die at that point. I distinctly remember thinking ‘it would be so much easier to give into this floaty feeling and pass out and I wouldn’t have to worry about it then’. I’d kept myself going until the ambulance got there, the ‘help’ I needed, but they were, to be frank, shocking. And could have killed me. They’d literally left me slumped in the hall, not taking my impending adrenal crisis seriously at all, having done no obs, not trying to get a cannula in to give me my life saving meds, no pain relief… If I was going to give up, it would have been then.

Except at that point, I took a big breath and inhaled my brother’s soggy sweatshirt half in my mouth from on the radiator. That f***** washing!! I was not giving my brother the satisfaction of his washing having killed me. Hell no!

The ambulance crew came back and my injection had started to kick in so I started to kick off a bit and argue with them. Get me some pain relief (they got some gas and air, it’s not as fun as people have led me to believe!). My shoulder is definitely still out, so stop pulling it, we need to be getting to hospital… they made me walk to the ambulance which I honestly don’t know how I managed, sheer desperation of needing to get there I reckon. Still no obs or cannula or anything. They kept saying ‘yeah but you had your IM and you’re clearly not in crisis’ and were faffing around in the back of the ambulance doing paperwork and making my mum wait outside.

Side note: no obs means they have no clue if I’m in crisis or not. And I always look ok and sound ok and then I’m not ok. And I’d never, ever been so ill before. And yeah, I’d had 100mg IM hydrocortisone, but that’s like filling your petrol tank up with fuel when there’s a gaping hole in it. You get some of it, but ultimately until you fix the problem (eg my dislocated shoulder), it’s not going to be much use. And the ambulance man in charge was adamant that my shoulder was back in.

Usually I try to get people to do what I need to do politely but I didn’t really have the luxury to do that here. They were actually going to wait until i was definitely dying before doing anything. I’ve been blue lighted for far less in the past. So I had a strop, told them they should be pre alerting resus, sticking their blue lights back on and doing some obs. I think the bloke mostly did it to ‘reassure me’ that it was fine but the next thing I knew the consultant at the hospital had said ‘blue light her in and give her what she wants’. And my mum appeared. So I then started telling her that she wasn’t allowed to leave me alone at all from now on even at the hospital and if I passed out she was going to have to insist on being given my drugs etc because people seemed stupid. The ambulance guy did a BP *finally* (highest I’ve ever seen it) and I was tachycardic a lot so I insisted on more IV hydrocortisone. He argued a bit saying about BP going down in crisis not up and I was like ‘YES BUT I’M NOT TEXTBOOK SO GIVE ME THE DRUGS’.

The other problem was, every time I stopped puffing on the gas and air to argue, the pain became unbearable and I started having to work hard to stay conscious again. Nothing like having to choose between giving instructions to stay alive and actively staying alive… On a serious note, if I didn’t already have some kind of PTSD from medical stuff I reckon I probably do now. More on that in a later blog post.

We got to the hospital after about 20 minutes (even with blue lights) and a doctor took one look at my shoulder and said ‘yep, that’s dislocated’. Oh really Mr ambulance man?? What had I been telling you?! His colleague said ‘we need to get you into a gown so I’ll help you take your dress off, or I can cut it off’. Cut it off! Do I care about a dress right now?! Not really! There was a bit more faffing I think mostly because the ambulance bloke didn’t really get the urgency so handed over to the first doctor as ‘it’s fine’. Thankfully I think his colleague had got my point by now so after a bit of discussion, I got moved to resus where the ED consultant picked up my case.

Things got better after that. The first doctor came back, but he was now assigned as my doctor and didn’t leave me until I was stable, rather than having multiple patients like he had when I’d first got there. The consultant in charge kept checking back and tried to ring my hospital in Coventry to get some info as to how to treat me properly/what they usually do with me when I’m in a&e. I got some morphine and IV paracetamol, they x rayed my shoulder, put it back in, x rayed it again and gave me some more hydrocortisone. After another hour, I got stepped down to majors from resus and they even sent me an endo specialist reg to review me.

The next job was getting back to Cumbria. It’s compulsory after a hospital trip to go to Macdonald’s (I don’t make the rules). Plus I hadn’t eaten much all day so off we went. I know now I still wasn’t feeling right because I wasn’t bothered about going into Macdonald’s wearing a hospital gown and a sling, looking like I’d been dragged through a hedge backwards. It must have looked pretty amusing to the people of York! And then again when we stopped at a service station.

So that’s part one of my pretty dramatic week, lasting about 5 minutes with my niece before dislocating my shoulder and trying out a new ambulance service and hospital! That would have been enough drama to put up with for about a year, but it got a lot worse the next day…

Reality Check

I have to go stay with my parents for 2 weeks because there’ll be no one here to look after me while my husband is away with work. The last time I stayed there, I ended up on a 24 hour hospital admission because I got an infection and needed IV steroids and antibiotics for my adrenal insufficiency. I’m usually a super organised person anyway and have a gazillion back up plans for most eventualities, but I thought I’d send my parents an email with a refresher on where to find things like my emergency injection, my info pack for when no one knows how to treat me if I’m unconscious, and what to say to an ambulance dispatch.

And then it kind of hit me how crazy it all is. I’m pretty used to dealing with it because it’s my every day life. But I kind of forget how odd it is for the average human being to think about, considering it’s a lot of ‘death’ talk. I was saying things like:

– if unconscious I need X and you might have to argue for it

– the ambulance need to put it on the same call out speed as a heart attack

– if doctors don’t know what to do, it’s in the info pack

Arguing for meds? Doctors not knowing what to do? Those kind of things shouldn’t even come into it. Most people have an emergency and they get the luxury of being able to concentrate fully on not dying, but I have to prep people looking after me with how to best argue with the keepers of the drugs and supposed medical expertise to make sure they don’t kill me through ignorance/lack of knowledge/arrogance.

And the thing is, this isn’t me on some kind of Doomsday Prepper escapade, running drills as to who can draw up and administer my injection the fastest. It’s not a hypothetical scenario. This is based on experiences I’ve had where I’ve needed to argue, where the ambulance has triaged me wrong and where doctors don’t actually know what to do so I’ve had to sort it out. All while trying to keep alive.

I tend to say ‘it’s fine though because I’ve always been able to sort myself out’ to try to reassure people, because it tends to freak people out. It still freaks my husband out, and he’s done it with me a lot of times, but he’s still not used to it really. Which puts a lot of pressure on me to a) keep conscious and calm b) keep on top of what the doctors are doing. I had to learn pretty quickly to keep calm and detach myself from it all, otherwise things would not end well.

I’m not a superhuman though. I might seem like I’m fine when I’m sitting up and talking with a cortisol level which says I should be in a coma, but there is going to be a time when I won’t be conscious and I’ll have to rely on other people. Like a car accident. Or a stomach bug. So it’s good to have plans in place to make it as unstressful as possible on other people.

But it’s still weird, right? There’s a pretty long list of things that might kill me every day, which are surprisingly mundane in terms of life events, and then there’s my plans to help prevent that. I decided a while ago that I wasn’t going to worry about all these little things because it just wastes cortisol I don’t have (and could therefore accelerate any potential death outcome, the irony) but also because everyone has to die at some point! The advantage I do have over other people is that I *do* have plans in place for those life things which other people might not have thought of. Eg car accidents. Severe illness from something ‘normal’ like flu. I also have the advantage of knowing how our healthcare system works so know how to and when to seek help. I have access to a lot of varied (prescribed) drugs and how I can best use them. I know how to read between the lines of doctor speak and know when they’re lying through their teeth or when they know what they’re on about. I can advocate for myself. I’ve got more practical, first hand knowledge in medical emergencies than a lot of junior doctors do. In summary, if there’s ever a zombie apocalypse, you want me in your underground shelter!

So while giving my parents instructions as to how to stop me from dying on their watch was a bit of a reality check for me in terms of how desensitised I’ve got to it all, it also was a reminder about how I do a pretty good job of keeping myself alive despite the complexities of my illness.

*touch wood* 😉

‘And that’s ok’

One of the things that many of us with long term chronic illnesses struggle with is you don’t get a break. Particularly if you have a complex illness which needs constant managing, you can’t just take your medications in the morning and get on with life. Your time is consumed with keeping an eye on your illness all day every day. It’s a bit like having a small child.

Also a bit like being a parent, there are many people who seem to think they know how to do things better than the way you’re doing it and offer unsolicited advice. Add that to everything you ‘should’ be doing as instructed by your doctors along with the expectations you set yourself, it can feel pretty overwhelming. But being as healthy as you can within your limits isn’t easy and sometimes no matter what you do or how you manage it, you either get it wrong or something throws you a curveball.

And that’s ok.

This is my new mantra I’ve been trying to adopt. There’s a huge difference between rationally knowing something and your body knowing something. Rationally, I’ve been able to tell you for months/years why it’s ok if things go wrong, but actually feeling and knowing that in my body is relatively new. I started trying to do this over a year ago in the summer when I was in and out of hospital all the time and feeling like an absolute failure because of it. But then I realised as I had yet another group of consultants and their regs (what seemed a bit too cheerfully!) debating all of the rare conditions I could potentially have which could kill me, that even the ‘experts’ didn’t have a clue what was going on either. And we largely still don’t!

And that’s ok.

Since I’ve been reinforcing this to myself, things have got a bit easier, mentally at the very least. But also from a managing my day to day symptoms point of view, it’s a lot easier to try something new or push my limits a bit when I don’t have the black cloud of ‘you’re an idiot if you get it wrong’ hanging over my head.

Sometimes I need to go to hospital and get IVs. Doesn’t always matter what happened for me to need them, sometimes I just need them. And that’s ok.

I track my weight every day, which might seem a bit extreme. But no one would believe me when I said it goes up and down depending on how much my body struggles rather than what I’m eating (or not eating). Sometimes I can put on 2kg overnight. And that’s ok.

Sometimes I need to increase my steroids or updose and I might not know why straight away, but my gut instinct is actually pretty good. And that’s ok.

It’s 4am and I’m writing a blog post because I can’t sleep and I’ve been awake since 2.30am. Before, I’d have stressed out about not being asleep but if I need to rest or sleep during the day tomorrow, I’ll do that. And that’s ok.

Sometimes I need to eat random things all day, other days I eat very little. Im trying to practise eating intuitively. And that’s ok.

There are lots of other things but you get the idea. When I catch myself starting to get into a cycle of ‘yeah but if I do this then that might happen’ or ‘if I need to eat more carbs then I’ll put more weight on’, I stop myself and say ‘and that’s ok’. It’s taken a long time, but I’m starting to feel like it’s working.

Willpower or self discipline isn’t a problem for me. If anything, I’m too strict on myself. So I’m pretty proud of the fact that I’m starting to see that it’s ok to get it wrong. Being ill isn’t my fault, there’s only so much control I have over how my health is and I’m doing all I can, and sometimes things happen for no reason at all.

And that’s ok.

Stress dosing for Christmas

The word stress has negative connotations with it but in adrenal insufficiency terms, it means anything which would be an added pressure to the body from what it normally deals with. And believe it or not, this includes happy or positive things too!

Cortisol production is one of those background processes that you take for granted if it works. Your adrenal glands produce cortisol on demand depending on what your body needs at the time, and they don’t just fire out extra for big things, like a car accident, they’re constantly monitoring what’s going on and making adjustments for smaller things too. If you think about cortisol production in relation to Christmas, here are some things where your body would naturally make more cortisol to compensate;

– getting annoyed with people who get in the way when you do the Christmas food shop

– losing their sellotape or scissors constantly when wrapping presents

– driving to see family or friends

– eating and drinking out of your routine and perhaps eating and drinking a bit too much

They don’t seem like big things, but they’re all seasonal activities needing more cortisol. Knowing I don’t make my own cortisol, I try to minimise the ‘stressors’ I can by either avoiding them completely or carefully planning. Which is fine when it’s a negative list, but for me it also includes positive things too. This is because the adrenal glands don’t know the difference between something that’s negative and needs extra cortisol and something positive which needs it- to them it’s just the same. Here are some positive Christmas things which will need extra cortisol:

– spending Christmas with 2 very excitable small children

– being excited about giving and receiving presents

staying up later than normal

– being extra sociable

I could live in a bubble and not get excited or do things and therefore my cortisol replacement could stay the same. But it’s not living and life isn’t predictable. So I’ve already decided that I’m going to stress dose over the Christmas period.

Normally, I’d feel bad about stress dosing for happy things. A lot of endos take the view that emotional stress doesn’t count and you shouldn’t stress dose unless someone has died and you’re in shock from grief. But what I’ve found is that emotional stressors have actually caused me bigger problems than illness related ones because they’re unpredictable and tricky to manage. As a patient though, it’s difficult to challenge the opinion of so many different experts and go against their advice.

So why am I doing it? I’m not just being stubborn or ignoring it, I’ve got my reasons!

– my endo trusts me and my judgement. This has given me the confidence to know what I need and do it. There isn’t a scientific way to check what my cortisol level is at any point, so it has to all be done based on my judgement

– I’ll be away from home so I don’t want to get caught out and end up in hospital

– I’m tapering from having had illness, so I won’t be doubling completely, more just increasing slightly

– I spend a lot of time living a compromised life, so a couple of days where I don’t feel like I’m completely dying (or at least am able to enjoy myself even if I still struggle) won’t do me any harm. It’s only a few days

– it’s always better to give yourself slightly more than too little. You don’t die immediately from too many steroids but you can easily from too few.

– there’s new research into this type of dosing appearing, but it’s new which means lots of endos haven’t heard of it or it’s up for discussion

– every single charity for adrenal insufficiency says increasing steroids around Christmas is a good idea. Particularly if you’re a child with AI who’s very excited about seeing Santa!

So there you have it. Stress dosing for adrenal insufficiency isn’t straight forward and includes positive ‘stressors’ as well as negative ones. I should probably write a disclaimer here which says I’m not an idiot and don’t just increase my steroids whenever I feel like it and am aware of the long term implications of too many steroids 😉 But for now, I’m looking forward to Christmas where I hopefully don’t struggle too much and enjoy being a little bit excited 😉

I had a bath!

Why is this exciting? Because I haven’t been able to have a bath in about 4 years. Obviously I’ve washed, I’ve not been unclean! But one of the things I used to really like was a bath and the last time I had one I ended up on hospital.

Having a bath was a problem for me because:

– the heat would lower my cortisol fast. Heat in general uses cortisol quicker in anyone eg warm weather, but when you replace it with pills, it gets tricky. And you can’t really justify updosing just so you can have a bath!

– getting out of the bath from hot to cold would ‘shock’ my system, depleting even more cortisol

– either the initial heat or changes in temperature would make me tachycardic which gave me a whole bunch of problems that would last hours

– physically getting in and out of the bath changed my blood pressure too dramatically and it would take ages to settle

– heat often gave me hypos

– getting in and out of the bath was dangerous because of the risk of fracturing my wrists or slipping

– my general pain level meant I couldn’t get in and out of the bath

– it took too long to recover afterwards.

Simple solution? Don’t have baths.

But when you have a chronic illness, you really miss the normal stuff. It’s like when you’ve had something like the flu or a stomach bug and you’re desperate to go back to eating your normal food and resume your normal activities but you don’t want to push your luck too much. Except it’s all the time. When you’re constantly making sacrifices or compromises or saying no to things you want to do, suddenly really normal things like having a bath are actually quite exciting. It was a no brainer- if baths mean going to hospital, obviously I won’t have one. But if there’s a way that I can do something normal, then it’s worth getting excited about.

Why can I suddenly have a bath when I couldn’t before? A lot of ‘planning’ and small changes. All of those problems still exist, just I’ve done a lot of work in other areas which have a positive impact on my ability to be able to cope with a bath:

– a lot of my issues were to do with extreme changes/responses to temperature. I’ve done a lot of research and work into how I can put my adrenal system under less pressure during the day, right down to the type of food I eat. Before, having a bath was a major stress on my body, now it’s still a problem but my body can deal with it slightly better

– I got in the bath early on so I could control the temperature a lot easier

– I made sure I had it after I’d eaten, but not too close to after I’d eaten (digesting food and bath would be too much pressure on my adrenal system)

– I have prophylactic rehydration drinks now so dehydration was less of a risk

– I’ve practised a lot how to safely use my hands and wrists to move around so that I don’t fracture things (or so I stand as little chance as possible)

– I’m on a stress dose after a cold and I’m tapering, so I actually have a little bit of extra cortisol I can afford to burn away a bit. I might not be able to have baths on my baseline but we shall see

– my pain is better controlled so I can get in and out a bit easier

All of that meant that I had a bath and I didn’t need to go to hospital! It might seem like a dull thing for normal people but for me it’s a pretty huge achievement and a step closer to doing normal things other people take for granted.

Having said that, it’s currently 2am and I’m awake writing a blog post. Which could be a knock on effect of having a bath, but could equally just be a case of that’s what my body is doing today. I won’t know until I try again though, so for now, I’m feeling positive about the fact that I could have a bath 🙂