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…