Packing to go away

Next week, I’m off to stay with my parents in Cumbria for a week because my husband will be working late or working away a lot and I can’t stay at home by myself. I can just about manage during the day myself while he’s doing a normal working day, but only because everything is pre-arranged eg all my meals and snacks are sorted, I don’t have to do things like load the dishwasher or tidy up after myself and if I feel really bad I only have to tough it out a few hours before he’ll be home to help me. I definitely can’t stay overnight alone because I’m more likely to have an adrenal crisis at night time where I really would need help from someone else.

Things are a bit weird at the moment anyway for me. I’ve got two stress fractures which are sapping all my cortisol. It’s hot which always makes things worse. There’s a lot of other ‘stresses’ going on which are also causing me problems periodically. So I’m mostly spending a lot of my time lying down watching tv rather than crocheting, which is a bit sad!

Anyway, this post is about packing to go away. It’s complicated. I have to take a lot of medical stuff with me, which is a lot anyway but more so because Cumbrian hospitals (or rather hospital- don’t get me started on that rant) are not well equipped and won’t necessarily have the meds I need on site if I have to go, so the more prepared I am the better. The only way I manage to keep some of my independence is by having set routines and aids, all of which have to come with me. Pretty much I’m like a baby- I only really function if I have my routine and my way of doing things with the stuff that’s normal for me. I find it almost impossible to adapt to things which are very similar but not exactly the same.

But packing is exhausting! And I’m not even talking about the active packing bit of putting things in a suitcase, I don’t even attempt to do that! I used to be a ninja packing. My dad was in the army so I had it down to military precision at one point in less than half an hour. Now it takes me over a week.

I start by writing a list. Then I spend the next week collecting everything I need and putting it in a pile. So I tend to concentrate on finding 2 or 3 things on my list a day because I can’t manage anything more than that on top of the other things I need to do on a daily basis. My list is on my phone and I can put a line through it but still see it. And it means I don’t lose my list!

Once I’ve got my pile, my husband will (much to my dismay) throw it all in a bag haphazardly and then my mum will help me get it out at the other end and put it into places I can get to easily.

It’s hard for me to be away from home because I won’t be near my local hospital, I have to miss 2 Chiro sessions which is the only thing which helps with my pain, everything will obviously be in a different place so I can’t use my routines in the same way, I have to take a whole week of meds with me which my husband has to sort out beforehand into dosset boxes, things like washing and showering are harder so I’ll just do it less often… logistically it’s hard. It’s when I’m not in my own house it makes me realise how much I rely on my ‘systems’ to cope and how vulnerable I am and feel when I don’t have them to fall back on anymore.

Either way, I’ve got my pile almost sorted so I just need to wait until my husband packs it for me now!

And don’t worry, I’ll have my crochet packed! 😉

Pigmentation making me look contagious

In the last year or so, I’ve gradually been getting more and more random spots. Helpfully, they all seem to be on my back or my neck so I didn’t actually notice them for a while but then I got some on my chest.

I showed them to a couple of doctors who were a bit like ‘oh well, you have spots, out of everything we’re looking at now, it’s not really that big a deal’. Which it isn’t, except for the fact that when you have a chronic illness, especially a weird one, the danger is everyone assumes that any symptom is associated with that, and it might not be. Random changes to skin could be a sign of infection, virus, allergy or even cancer.

I still don’t really know what they are, but I showed them to a couple of endocrine groups I joined on Facebook and lots of people said they have something similar- pigmentation, which is a classic sign of Addison’s disease or primary adrenal insufficiency.

The weird thing is, you’re only really supposed to get pigmentation if your ACTH, a hormone from your pituitary, is really high. In primary AI, the pituitary is desperately trying to get the adrenals to make cortisol so it pumps out a whole load extra ACTH thinking the adrenals don’t have enough. But my ACTH level is undetectable. Or, you can get it because you’re deficient in mineralcorticoids because your adrenal cortex is damaged. Which, again, isn’t a problem of mine. So if it is pigmentation because of AI, then it’s weird and if it’s not pigmentation, no one seems to know what it is!

Half the reason I think it might be pigmentation is because it gets a lot worse when I’m low on cortisol, when I’ve tapered steroids or immediately after I’ve been in hospital. And it vanishes when I’m having a good day. My theory is, if it were viral or fungal it would be a crazy coincidence for it to do this precisely at these times every time. But who knows with me!

I don’t really mind them because they’re mostly in places I can’t see! And they’re not itchy, dry or painful. But they do make me look contagious, as my husband tells me regularly. I promise I’m not! I also had some on my face at the weekend for the first time, which I won’t be thrilled about if that becomes a regular feature. Putting make up on covered them a bit but it’s hard putting makeup on the back of your neck when you can’t see but also it’s sometimes way beyond my energy levels to put on make up full stop.

So if anyone has any handy make up tricks or specific make up brands that don’t involve lots of blending and contouring I’d be grateful! 🙂

Low Cortisol Can Make You Suicidal

No one told me that when I got diagnosed with adrenal insufficiency. Mostly because I think the NHS is woefully poor in the way it deals with patients with chronic, long term illnesses and their mental health in general (I’ll write another post on that), but when you have adrenal insufficiency, it gets more complicated. It’s mental health awareness week so it seems apt to write a post about this this week.

Cortisol affects your mood in different ways. Too much in a healthy person, if you’re under a lot of stress, makes you anxious, irritable and obsessive. Too little in a person makes you depressed. Dangerously low cortisol makes you suicidal.

It’s only now that I fully realise that I spent about 2 years feeling constantly suicidal, and more time whenever I was tapering my hydrocortisone feeling it on and off. In a nutshell, my steroid dose was set dangerously too low and I was waking up every morning with 0 cortisol in my body according to blood work. I wasn’t on enough to survive, so my body was using all of it up trying to keep alive, not regulating my mood. I was also having lots of debilitating physical symptoms so had to stress/updose a lot to keep out of adrenal crisis. But, because there’s no way of working out how much cortisol to give yourself because there isn’t a testing meter like there is for blood sugar, my body would peak the cortisol replacement too much too fast to combat what was going on and I’d then become incredibly anxious and obsessive. Which would then be followed by a depressive crash once the cortisol wore off, which is between 4-6 hours. This wasn’t happening every few days, this was happening multiple times a day, like a roller coaster.

I should say I wasn’t ever actively suicidal where I tried to kill myself. Low cortisol is a lot more subtle than that, it kind of eats away at you. It was passive. So I assumed everyone hated me or I’d upset everyone. I didn’t think anyone would care if I didn’t wake up the next day. I wondered what it would be like to not take my steroids because I knew I’d die pretty quickly if I didn’t. I just didn’t feel like I wanted to exist or my existence didn’t matter. My memory was so poor I’d forget anything positive but I’d remember anything negative, but a lot of it was my mind blowing it out of proportion because I couldn’t remember what actually happened and my mind filled the holes in my memory in with negatives.

This wasn’t helped my a number of things. And this is where I think the NHS let me down. I had a particularly awful endo who told me that my adrenal insufficiency wasn’t as bad as I was making out and that my problems were all in my head so I should go away and deal with those because I wasn’t his problem anymore. He also told me to stop wasting people’s time by going to a&e because there was nothing wrong with me. I got really wound up and burst into tears, to which he replied ‘oh I love it when my patients cry at me’ and said how this backed up his point. Now I know he was very wrong and he’s not my endo anymore. But at the time it made me question everything and I thought ‘maybe this is all in my head’ which obviously made it worse.

Then I had issues accessing my medication because steroids are a drug you’re supposed to only take for short periods in most cases. But not when it keeps you alive. However, the NHS and the computer system don’t realise that. So I was having monthly arguments with my GP about getting them to prescribe my medication to stay alive and this wasn’t helped by my idiot endo saying it was all psychological. Which, because I was already thinking ‘I wonder what would happen if I don’t take my steroids’, turned into ‘they actually don’t care if I live or die. Maybe I’ll just stop arguing and die instead’. Whichever way you look at it, I still had adrenal insufficiency so needed the medication to live. And by now I did have mental health problems because I was living on too little cortisol and having to argue every step of the way. On balance, is it any wonder I was depressed anyway? I’d had to give up my job, I’d lost all of my independence, I had to stop driving, I was in and out of hospital, I’d doubled my body weight, I lost all my confidence, I was pretty much housebound at one point and I couldn’t look after myself and had to rely on my husband for everything. Who wouldn’t be depressed anyway? It’s a bloody miracle I got out of bed every day! But as far as the NHS was concerned, as long as I hadn’t died yet, they didn’t really care about how I felt.

I found a new endo who did actually care and sent me to a psychiatrist. Who declared that steroids make you depressed (ironically true) so if I could just stop taking steroids then my depression would get better. And that clearly couldn’t happen so she said I wasn’t her problem either. The doctors actually used the word ‘problem’ consistently by the way, that’s not me embellishing it or remembering it wrong 😉

My new endo also let me increase my daily baseline temporarily and this was a game changer. Suddenly a cloud lifted and I didn’t feel the same anymore. I’ve been meditating for 2 years anyway and doing CBT but it had never worked so I assumed it was me being stupid and not doing it right. But, feeling slightly better on a higher baseline, I realised that no matter what I did to help my mental health, it didn’t make any difference sometimes. And it got a lot worse whenever I tapered. The cloud and the thoughts came back. So I did some research and found that low cortisol makes you suicidal. And because I don’t make the hormones which help make other people feel better when they practise CBT and meditation, I wasn’t going to be able to feel better until I addressed the chemical imbalance. Yes, some of it was because my mental health was poor because of the reasons I mentioned before, but some of it was a physical problem. And we all know that mental health impacts on your physical health so it was a catch 22.

Now I’m on different steroids entirely and I do not feel the same at all. My general mood has improved, although it’s still not great. I still get some days where I feel like I used to, but I can recognise it and do something about it. Before, I was permanently on the brink of crisis, probably a mental health one as much as an adrenal one, and I couldn’t see the wood for the trees. So low cortisol definitely makes your mood worse and I don’t think this is recognised enough in treating adrenal insufficiency patients. I didn’t talk about it much because I didn’t think anyone cared and my doctors kept making out that my mental health was just me being stupid and I should just deal with it. Why would I want to talk about it, if they already made it out to be a weakness? I just wish I’d known all of this 4 years ago, hence why I’m writing this blog in case it can help someone else 🙂

Shout out to the teachers

Teachers get a raw deal. People constantly make comments about how much holiday we have and how we finish at 3pm. Or we get compared with front line and NHS workers who save lives and how nothing we do is remotely close.

So this post is a shout out to teachers, specifically secondary teachers (because I used to be one so can comment on it), who are extremely busy at this time of year. It’s not meant to be a political post or a comparison with aforementioned NHS or front line workers, or a moaning post about how little teachers are paid. It’s a post to explain what teachers do at this time of year and why comments about long holidays and short working days won’t go down very well right now. It’s prime exam time. The goal is to have all your coursework in before the Easter holidays so that you can mark it all and still have a couple of weeks to get kids to make any changes. But Easter was early this year which means less time for the kids so invariably means intervention days with the kids during the easter holidays, if you weren’t already doing these, and no sleep for the entire of April/May while you mark it.

The government wants your child to be a statistic (ok, slightly political but relevant), so in a lot of subjects, their target GCSE or A-level (or other qualification) grade isn’t based on a teacher assessment or even based on that subject, it’s based on data which comes from primary school SATs/end of year 6 data usually in English/maths/science. So a music target is based on an achievement in science, for example. For many pupils this grade is set too high so they’ve already been set up to fail. Not to mention that the exam syllabi keep changing every 30 seconds and some students were actually having to sit exams for content they hadn’t learnt in years 7-9 and had to have crammed in, rather than having 3 years to learn it because a politician didn’t understand how schools actually work and decreed it.

Because of league tables and how schools are funded by the government, schools need the pupils to achieve their predicted target grades. If you don’t meet your stats, you don’t get funding for that child and if you don’t get the money, headteachers have to make difficult decisions about what (or who) to cut. Which creates an enormous amount of stress for the child and teacher. Note- teachers always want the best from their kids work wise and want them to achieve their targets. But these have to be reasonable and achievable targets, not ones generated by a computer and based on league tables and other random data.

So this time of year is fraught. And students are bombarded every which way because everyone has deadlines to meet and target grades to achieve. It’s too much for them, so at least three times a day you’re trying to support a child who’s feeling broken by the stress of it and has had a meltdown, had a fight with someone or just generally isn’t coping. This is normal stuff that teachers do on a day to day basis, but because it happens more often in exam time, there’s less time in general, so you find yourself torn between making sure the mental health of the child in front of you improves and trying to keep other students on track with their intervention.

Intervention means where a student isn’t meeting their target grade, or in danger of not meeting it, so you put in place support measures for them. These sessions usually take place at lunchtime, before school, in teachers’ ‘free’ (planning and assessment time) periods or after school. Sometimes at weekends too. Students don’t like coming to these sessions so you usually have to hunt them down. Or they’re needed in other subjects. And they feel pulled in all directions so they do what most people do in circumstances like these- panic and stop turning up to any of them.

Which means a lot of hunting and phone calls and, in some cases, turning up to children’s houses to get them to come in or give you their coursework. It’s knackering, both physically and mentally, and the more time you spend chasing one student, the less time you have for the others. But this is time you don’t actually get as extra on your timetable, you’re still expected to teach all your other classes and run all the clubs and do the duties you already had. And you can pretty much guarantee that the student you’ve been desperate to give help to turns up at your door when you’re teaching a year 7 class, but you know if you let them go, you won’t see them again. So then you end up trying to teach a class while also giving intervention to a student. Or 3.

And teachers are humans too. So when stressed teenagers aren’t coping, they tend to shout and swear at the people trying to help them. Which, even though you can understand and empathise, you’re stressed and tired too and no one appreciates being sworn and shouted at multiple times a day. The rest of the school pick up on this atmosphere, meaning ks3 pupils get more fraught and tense and teaching them becomes more challenging behaviour wise. They also still deserve a decent education, they need to have assessments and you still have all their planning and marking to do. Believe it or not, you can’t rock up and make something up on the spot and get away with it!

It’s the time of year for options to be made for pupils in the year below choosing GCSE and A-levels. If you don’t have enough pupils recruited, you can’t run the course. But everyone is in the same boat so you’re ‘competing’ for students to be on your courses. I tended to say ‘pick a subject because you love it, not because another person tells you to’ but it didn’t make it any less stressful. You have to offer taster classes, prepare presentations for parents and showcase your department.

Despite putting in the extra work at school, you don’t get to leave it all at school. You have to do all the marking you didn’t do in the day. One thing that people don’t realise about intervention is that it all has to be documented. Every phone call, chat with child, action plan, progress made has to be documented as evidence for people like OFSTED. Which means by the end of the week, you can find yourself having written the equivalent of a primary school teacher’s class worth of end of year reports just about your GCSE class. Every week for the whole of exam season.

Another thing that people don’t realise is that social media, educational social media and emails are used all the time by students. Which is great for so many things and it means you can offer help from home while they’re working on it. Great for the kids, not so much for the teachers. If you don’t reply straight away, chances are they’ll say ‘you didn’t reply so I didn’t do it’. And you need them to do it. So you end up hearing the email ding and picking up your phone straight away to deal with it. Kids like to do their work at about midnight in a lot of cases (not good for them either) so I have been known to be emailing help at 1am when my phone dinged and I woke up to deal with it.

And everyone underestimates the emotional aspect of teaching. You worry about your kids- and they are ‘your kids’. If someone was particularly upset or had a crisis of confidence, you worry if they’re ok. You worry about the kid who isn’t coping. You worry that you’ve not done a good enough job for them. You worry that you’ve failed them by not giving them enough help. I used to wake up in the middle of the night singing pupils’ compositions (which usually meant they were good if they were stuck in my head). You take it personally even though it’s not because even though the government only sees kids as a statistic in a league table, you can see them as humans who are put under an unbelievable amount of pressure to achieve a target grade decided by a computer when they were 11 years old, before they’d even set foot in a secondary school.

GCSE and A level classes make up a lot of a teacher’s timetable, but in my subject’s case, I still also taught all of key stage 3. So that’s 8 classes per year group for year 7 and 8 x 30, which is the average number of students per class. Summer term is usually parents’ evening for year 7/8 in most secondary schools and most of the time, you give them the academic report at the same time so they can talk about it. So that’s 16 classes x 30 = 480 reports. You can’t just write your reports when you want to and you can’t always do this from home because the reports are usually done on SIMs which is one of the most irritating programmes which exists- the ‘session’ is usually only open for 6 weeks and the remote access is so irritatingly slow it’s enough to tip anyone over the edge. So 6 weeks x 5 (working days) is 30. 480 reports divided by the amount of days (30) is 16. Meaning as well as all the exam stuff, you also have to write 16 year 7 and 8 academic reports per day just to be able to get them in before the deadline. This would be a lot of extra work anyway, never mind when you’re already up to your eyeballs in it. And copying and pasting and changing s child’s name isn’t allowed.

Admin and running around isn’t why you became a teacher though. Working with the kids is why you became a teacher. Seeing them achieve and working hard and enjoying your subject is why you do it. When something clicks with a student, it’s a great feeling for both of you. I really liked the challenging schools I worked in, and, thankfully, the schools I worked in placed the emphasis on the students being seen as humans and not statistics and they fought bloody hard for the pupils. But academies and other schools don’t necessarily care if English is the child’s third language. Or if someone’s mum killed herself the year before and the child is still struggling. Or if someone broke up with their boyfriend (which has a massive impact). Or self image issues. Or if it was Ramadan during exam season. Some kids don’t eat breakfast because there isn’t any at home, so I used to do a breakfast club in exam season so I knew they’d go into exams with the best chance.

Notice I’ve never mentioned pay at any point. You don’t get a bonus if your kids get their target or exceed it, like you do in other sectors. You don’t get paid overtime or antisocial working like you do in other industries. You definitely don’t get the support of the general public like the junior doctors do and I think you’ll find a lot of schools have started sneaking in the extra hour here or there that teachers don’t get paid extra for but it takes time away from their prep time. Teachers don’t go into teaching because they expect to be paid well. Teachers go into teaching because they love it and care about the students.

So yes. We might get 13 weeks holiday on paper. We might technically finish at 3pm according to school bells. But while you’re actually conscious, and even sometimes when you’re not, you don’t stop working during those apparent free times, meaning comments about holiday and working hours will not be well received at this time of year! 🙂

Day Trip to the Beach

A friend and I have been trying to go on a trip to the beach for about a year and failed for a number of reasons. So this week we combined a trip to the beach at Barry Island with seeing a friend who lives near ish. It was vaguely spontaneous in that we picked a day that looked sunny, made sure our friend was free and off we went!

It was a successful trip! I mean, look how lovely it was, and how empty of people!

Going out for the day in term time is so much better than in the holidays and places are busy. One perk to not being in teaching anymore…

I was a little bit apprehensive, I admit. Not about spending time with friends, but me travelling anywhere can be complicated and in the past it’s not been a good idea/possible/safe/I’ve not been well enough. I’m pretty practical about my adrenal insufficiency, but it takes me a bit of planning. This day trip was a bigger deal than normal for me because:

  • It’s the first time I’ve left the county without my husband pretty much for 2 years. I carry a lot of info about my condition in my emergency pack, wear medical ID and also have a tag that I put on the headrest of the car so that if we have an accident, people know that I’ve got a medical alert. But it all depends if people find those things/pay attention to them. My husband obviously knows everything about me or knows exactly what to say. My friends know me well too (clearly!), have been injection trained and wouldn’t let me die, but it’s a big deal not having the ‘safety net’ of my husband nearby.
  • I’m not ‘known’ or red flagged when I leave the county. So in the midlands, if I ring an ambulance, I get a quick call out and the crew get given a lot of information about me before they arrive on scene because of the alert. But that only works with my local ambulance service, not anywhere else in the U.K.. A similar thing happens in my local hospital, but again, not anywhere else in the U.K. For context, I stopped visiting my parents for a while when I was really unstable because the hospitals where they live are so rural (and far away) that if anything happened I’d probably die.
  • It’s not that long ago that I had a particularly bad experience in hospital where people did have my full records, let alone somewhere where they don’t.
  • I’m an unusual case of an already unusual illness.
  • I sometimes find long distances in cars and new places stressful because I need the toilet a lot because of my diabetes insipidus. Which might sound stupid, but it plays a massive part! I knew my friends wouldn’t mind, but it still played on my mind.
  • I woke up that morning with my ‘adrenal crisis’ dream. It’s basically my body telling me to wake up and have more steroid because I’m getting low on cortisol and I could be heading for trouble. I dream I’m having an adrenal crisis and usually wake up as a I fall unconscious in my dream. So it’s actually pretty useful! But it does usually mean that I’m in for a bad day. However, despite having the dream, I felt ok when I woke up, so I guess that one was just anxiety.

All those things being said, I can’t live my life in a bubble and never leave the house. I could get knocked over by a car going to the shop and die like a normal person. Random things happen. I was also reassured in that my friend who drove us is super practical and calm and we spend a lot of time together, and that the friend who we were seeing is a nurse. I’ve also been considerably more stable since changing my steroids, so unless I’d woken up feeling terrible, it was likely I’d be absolutely fine, which wasn’t the case on my old treatment plan. However, the more you plan for things going wrong, the less chance there is of things going wrong. So I was still prepared!

And we had a lovely day! It was sunny weather, we had some lunch and chatted while sitting on the beach. It felt like a little holiday! I felt a bit more like ‘the old me’ and had a kind of ‘this is the kind of thing I’ve been missing out for the last 4 years’. It gave me a bit more confidence. It might be something that other people take for granted, being able to go on a day trip with friends, but it’s not something I’ve been able to do for a long time. And I did have to make sure I laid down for 2 days before so that I could manage it! It might only be a baby step, but it felt like a pretty big one for me! 🙂

Should

Like a lot of people, I imagine, I spend a lot of time thinking about the things I ‘should’ be doing. And then feeling guilty that I’m not doing them. I do it about pretty much everything. Earlier I was lying on the sofa watching Netflix and thinking ‘it’s sunny, I should be outside’. Then I caught myself and said ‘but you were outside this morning before it got hot and the reason you’re inside is because it’s too hot for you outside. Why are you feeling bad about that?’

That then got me thinking about when I was younger and it was sunny. Sometimes I’d play inside, sometimes I’d play outside. I didn’t feel like I ‘should’ be anywhere in particular. When did that change? I guess it must have been when I started having things like exams to study for and I felt like I should be doing that in my own time rather than choosing what I wanted to do. And then you hardly get away from work when you’re a teacher, you always feel like you should be working.

Some of it is part of being an adult. You have to do things like pay bills and do chores and turn up to work. You have responsibilities. But there’s a balance, and somewhere I have lost the balance because I pretty much feel like I should be doing something else all the time. It’s like a restless feeling. I’m actually quite good at being present- if I’m doing something I appreciate the little things and focus on the moment. Mindfulness and meditation have taught me that. But I still have the ‘should’ feeling.

After I thought about it a bit more, I realised that it’s mostly come about since I developed adrenal insufficiency. A symptom of adrenal insufficiency is perfectionism. It’s actually really hard for us to let things drop. Think about it- the hormone that helps you manage stress is lacking, so unless you do something about the stress, it’s really hard to move on. And the easiest way to get rid of stress is to just do the thing you think you ‘should’ be doing in the first place.

Part of it is from having a chronic illness in general. The problem with being ill is you spend a lot of time stopping yourself from doing things you want to do because you know the consequences won’t be worth it. So you know what you should be doing to protect your health but you desperately want to do the opposite. You’re purposefully stopping yourself from being happy in the moment, to avoid payback later. Is it any wonder that I spend my life feeling guilty? I want to eat cake but I shouldn’t. I want to stay up late and chat with my friends but I shouldn’t. I want to go to a beer garden and have a glass of wine in the sun but I shouldn’t. I want to go for a run but I shouldn’t. And so I don’t do those things. Instead, I try to fill my life with other things I can do. Like listening to music in the garden. Or crocheting. Or sitting in the park with friends. But instead the mindset is working against me- now when I sit in the garden listening to music I’m thinking about other things I ‘should’ be doing. Like ‘I need to shower today, that’ll take me a while, I should do it now’ or ‘I should eat now so I don’t have to lie down before doing X’.

I need to recognise that it’s ok not to be perfect with my condition because ‘normal’ people are not perfect in their life. That it’s ok to do something because I want to do it, within my parameters, and not because I feel like I can’t let myself do it because I should be doing something else. So maybe I could be doing other things with my time right now, but actually, I’m quite happy sitting outside looking at the blossom on the tree in my garden 🙂

How I Was Better Off Collapsing in Toys ‘R’ Us Than Hospital

When I was a student, I randomly collapsed and had a seizure while in Toys ‘R’ Us (of all places!). My friend asked a passer by to get help and put me in the recovery position, the manager came and got a bit panicky but still called an ambulance and the ambulance came and took me to hospital. At the time, I only had asthma as a medical condition and I’d never even fainted before, let alone had a seizure. It came out of the blue and none of the people who helped me could work out what had happened, or even knew that much about me except for my name and that I was buying toys!

This weekend, I went to A&E because I thought I’d fractured my wrist. I told triage about my already fractured foot and my adrenal insufficiency and how it complicates things, and then someone decided to make me walk on said broken foot, a lot further than I can manage on a good day anyway. I could tell you the whys and wherefores about the walking, but it would take too long in this post- just trust me in that it was a massive stupid move by the hospital and I had to walk a lot further than I physically can.

Which ended up in me almost passing out and lying down on a hospital corridor. Thankfully without toys this time! As I was kind of drifting, I said I needed my injection and could hear my husband saying words of the same effect. I wasn’t in a position to do it and my husband was a bit wound up, has also never done it and why would he do it- we were in hospital and there were lots of trained people floating about.

Except everyone refused. The guy who’d been making me walk just vanished and never came back. The nurses on the nearest station just told my husband I should get up and come to them. The doctors said they weren’t prepared to do it because they hadn’t seen it before. No one wanted my husband to do it for me either. There was a group of what should be highly trained medical people all looking at me and no one stepped up to do the injection or even to come up with a plan. It wasn’t until my husband made some kind of comment about how it’s coma or injection that one of the staff started to try to come up with something, and even then I’m pretty sure she was a healthcare assistant rather than a doctor. So the least qualified person ended up taking charge.

I get it- there are rules and procedures to follow. Having been a teacher, there are a bunch of protocols you have to follow, particularly when medical things are involved. But you also have to apply common sense. If a kid is in anaphylaxis, in theory, I’m supposed to guide them to use their epipen. I’m not supposed to administer it to them. In practice, if a kid can’t breathe, I’m stabbing them with their epipen and worrying about it later! One doctor told us ‘I’m not qualified to give IM injections’. Ermmmm yes you are. If I can give myself this injection, I’m damn sure she can. She just didn’t want to get in trouble if I died, even though if she didn’t give me it I could die. Apparently death is an ok outcome as long as the doctor doesn’t get blamed for it.

When I keeled over with the seizure as a student, no one knew anything and I still got help because someone took charge. Last weekend, I had paperwork from my consultant saying about my injection and condition, I had a labelled container, I had all of the bits required to do the injection, I was carrying a full list of my meds and allergies and other conditions, I was wearing my medical ID. All this lives in my injection kit and was on the floor next to me as I was trying to do it. The people who could have helped me would have had more information than they actually needed and they still didn’t help me. They definitely had enough for someone to make a plan. But instead of someone getting on the floor with me and having a look, they all stood and blinked at me like rabbit in headlights.

If I were having a heart attack, would I have been treated the same? Would people have taken as long to act? I’d like to think it would have been a different outcome, but this is where medics need to be able to think outside the box. Labs, tests and machines are all very well and good, but if you can’t think clearly in a crisis situation, then maybe you shouldn’t have become a medic. Treating people is just as much of an art as a science because we all come in different shapes and sizes and our health often fails us when we least expect it, rather than when we’re sitting in a clinic room and you’ve got our medical history in your hand. Although, this was actually available at the weekend, no one bothered to look.

So I actually felt like I got better reassurance, dignity and care from the random people who helped me when I was lying on a floor in Toys ‘R’ Us than I did from medical staff in hospital. Granted I was unconscious then so it was more stressful for everyone else than me, but I don’t look back on that episode with anxiety and never have, despite being unconscious. I definitely feel anxious about having a similar occurrence to what happened at the weekend in hospital though.