The Night Shift

Good grief, you do not want to work in this hospital. There’s at least some kind of natural disaster, gunman, industrial accident or just general peril every night which the staff have to deal with. I thought Meredith had a disproportionate amount of bad luck in Grey’s Anatomy, but I think the staff here just manage to beat her! Also like Grey’s Anatomy, there’s a disproportionate amount of attractive staff who work there!

The Night Shift is a medical drama set in San Antonio following, unsurprisingly, the Night Shift working in the hospital (for the most part). A lot of the staff were deployed abroad with the armed forces at some point, so bring military experience to the job. I’m not sure if San Antonio is a military area in real life or not, but there were also a lot of soldiers who came in as patients from nearby bases. So while it’s a medical drama and you see a range of emergency cases, the show focuses on some of the problems soldiers face as part of their reintegration into civilian life. There are also regular flashbacks to when the doctors were working in military and field hospitals, which help you understand more about a character, or shows where their skills and insights are directly transferable to the general public, even if it’s not immediately obvious what they’re looking for to start with.

Medically, it mostly seemed accurate to me. I mean, when they said ‘BP is down’ it actually was going down on the monitor and they didn’t try to shock asystole (like they did on ER). Having said that, someone nearly always needed to have surgery ‘in the field’ every episode, and there’s no way that all of them would have survived infections they were bound to get from them having sterilised a pen knife with some vodka (for example). So realistic but with a massive pinch of salt. 

It was easy to watch and the characters were likeable enough. I did find the military background interesting- I don’t think I’d have enjoyed it as much if that wasn’t there. There were also some storylines which tackled every-day discrimination which I quite liked: e.g. Don’t ask don’t tell in the military, male nursing staff, racism. I particularly liked the fact that they had a few mental health storylines which forced the doctors to review the way they treated patients- some were adamant that mental health was a waste of time and neglected to see how it impacted on physical health until it was ‘too late’, forcing their opinion to change as to how to treat patients in the future. There were 2 ‘shoutouts’ to my rare medical condition- one time they got the facts wrong, the other was much more accurate, so not sure what happened to the researchers in between! A couple of characters did seem to just disappear though, either I wasn’t paying close enough attention or they just got written out quickly. 

I liked the fact the series tried to develop the characters and we saw their histories through flashbacks. I also liked that it was very obviously a flashback because it was set in war zones rather than the hospital, meaning I could keep up! I wouldn’t say it’s like Grey’s Anatomy, where you’re missing out if you haven’t watched it, but The Night Shift helped me pass a rainy rest week in my pjs quite happily 🙂 

Photo: NBC

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Breathing

Breathing is not proving fun at the moment. I have asthma, and April was always a tricky time of year for me breathing-wise due to fog and April showers, but there’s a bit more than asthma going on. The outcome is I’m really struggling to sleep, which if you’ve read my previous posts, you’ll know I don’t sleep much anyway! I can’t lie down to sleep, so have to sleep sitting up to help with the pain I have in my chest and wheezing. I have a type of asthma where I don’t normally wheeze in an attack, so wheezing is a bit unusual.

If it looks like a duck and quacks like a duck, it’s a duck, right? No, that would be straight forward. It looks and sounds like asthma, and some of it is, but it’s actually my endocrine system playing up. This seems to be one of my quirks and actually made it take a bit longer to get a diagnosis of Adrenal Insufficiency. I was having lots of ‘asthma attacks’ but without any obvious trigger. The last time an ambulance was called for me having an asthma attack, my o2 sats were in the 80s and I was wheezing, but I was still talking in full sentences, didn’t feel ‘that bad’ (I’d felt worse) and was sitting up joking with the paramedic. Which completely baffled her because she gave me lots of rounds of nebulisers and nothing was bringing my sats back up, until she gave me a hydrocortisone neb, which worked within minutes.

Two and a bit weeks on the regional respiratory specialist ward with some very clever doctors and they were also confused. I had asthma, but things weren’t adding up still. Then I got diagnosed with adrenal insufficiency. Once I got to grips with my new diagnosis, I started noticing that when I ended up in a&e wheezing with falling o2, nebs didn’t make much difference, but treating the adrenal Insufficiency instead did. But, as you can imagine, it makes me sound a bit bonkers refusing nebulisers and asking for other drugs instead…! 

The other bizarre thing that happens is that I have this ‘I need to eat’ feeling a little while before the wheezing starts. If I ignore it, I get wheezy, if I eat, I can sometimes stop it from starting. Which doesn’t make a lot of sense either! And also made me sound crazy to the very clever doctors on the respiratory ward! 

So I still don’t know why I get wheezy and my sats drop and how it interlinks with my endocrine system/needing to eat, but it does somehow. Having spoken to some other AI patients, a few also had breathing issues prior to diagnosis as well, but it’s not a common symptom. I can manage in the day most of the time, but at night it’s difficult because it’s blatantly obvious that it’s hard to breathe and there’s nothing to distract myself with- lots of relaxation things focus on breathing, which doesn’t help. It’s also not very pleasant, not being able to breathe properly. That’s partially why I’ve been writing film and tv review blogs at night because it preoccupies part of my mind and encourages my body to get into good breathing cycles subconsciously as much as I can to help with sleep. It’ll pass, I’m sure, it’s just a case of dealing with the breathing things as they come up. If anyone else has a similar experience or advice, I’d be interested in hearing about it! 🙂 

Heartland 

I was brought up in the countryside (in the UK) so ‘farm life’ isn’t a foreign concept to me, but I am in in no way an animal person. And definitely not a horse person. So why, you might be asking, did I decide to watch a Tv series about a ranch and the surrounding community, where pretty much every scene features a horse? Well, I’d just finished Gilmore Girls on Netflix and wanted another show that had a lot of series on there, and it was in the ‘because you watched…’ section. So I thought I’d give it a go. 

And then I got hooked! It’s the first Canadian show I’d watched, so the accents took a bit of getting used to, but I loved it. Sadly only seasons 1-6 were on Netflix in the uk, and season 7 just got released, which I binge watched within the space of 2 days. I *need* the rest to be uploaded soon! (Please!)

Amy is a teenager who loses her mum in an accident, and who also has inherited her mum’s gift with horses. She’s not a horse whisperer (she doesn’t like being called that), but she does more than just train horses. Once Amy recovers from the same accident which killed her Mum, she takes over the day-to-day business at the ranch (heartland) that her mum used to do, supported by her business-minded sister Lou and her grandfather, Jack. A ranch hand called Ty, who is on probation for petty crimes, also comes to live and work there, and the horse-crazy ‘next door neighbour’, Mallory, drops in so often she basically lives there- I love Mallory as a character! Amy and Lou’s dad becomes a permanent fixture in their lives, and a lot of screen time is devoted to happy (and some eventful) meals around the Bartlett/Fleming dinner table. Other characters come and go as the story progresses through the seasons. 

So why do I like it? It’s easy watching but with enough ‘drama’ that you want to find out what’s happening. The characters are loveable- Jack appears to be a grumpy old man, but is actually anything but, and I even started to like Tim, who I hated in the beginning. The scenery is stunning- I really, really want to visit Canada now! But it was also really interesting learning about ranch-life and how to look after horses. We don’t have ranches or rodeos in the UK, so it was really enlightening to see what cowboys actually get up to, rather than their outfits just being seen at fancy dress parties like they are here. Plus I like programmes where theyre factually accurate e.g. the vet and medical stuff. 

It’s the kind of show that I’d watch again from the beginning because I like the characters and the world they live in. In fact, if I can’t sleep, I put Heartland on because the familiarity of the music and voices helps me relax! I also particularly liked that the actors all can ride- some of it must be done by stunt people, but there are lots of shots where it’s clear it’s the actors riding. 

The storylines might not be the most sophisticated in the world and some are pretty predictable, but actually, I quite liked that. And Heartland definitely beats Eastenders or Coronation Street anyway…! If you want to watch something heartwarming with beautiful scenery, then Heartland is a good show to watch! 

Now I just have to wait for the rest to appear on Netflix 😦

Photo: Studio Image

Their Finest

I really liked this film. I love films and stories that are about WWII because I find that period of history really interesting, but it’s not often I get so absorbed in a film that I forget that I’m in the cinema surrounded by strangers (I get really annoyed by other people making noises very easily!). 

By way of a brief synopsis, Mrs Cole finds herself offered a job in London as a film writer for the war effort. The government is concerned that people aren’t having access to ‘authentic and optimistic’ stories when they watch the news or films at the cinema, and they want someone who can get across their important messages, but do it in a way that people can relate to. Mrs Cole is that person, along with a small team. The film follows the team through the process of researching, creating, writing and filming. I won’t write any more because there were actually a lot of twists and turns and I don’t want to ruin it for anyone! 

Mrs Cole is (obviously) a woman, so the aspect of women ‘being allowed to work’ was covered as part of the film as well. It was quite nice to watch a war-time film that followed the ordinary people during the war, as a lot of movies recently have focussed on the bloody and violent parts of war where all of the action takes place. But actually, being constantly under siege by bombs and having to make do with rations and poor living conditions is also a challenge. 

Because Their Finest is about making a film, it was quite artistic in the way it was communicated to us. So the film they were making became intertwined with the characters’ storylines and you could make links between what the writers were thinking and feeling and how it impacted directly on their work. As an ex-head of faculty for the the creative arts, this appealed to me massively because the creative process often gets left out of or forgotten about, with the focus being on the final product. I enjoyed watching the brainstorming sessions and seeing where ideas came from, as well as how they adapted their ideas when things were going wrong. I did find myself thinking two thoughts a lot throughout the film: firstly ‘I’m so glad laptops don’t weigh as much as typewriters- can you imagine having to lug that thing around?!’ and secondly, ‘I’m so glad we can edit things on laptops rather than having to type the whole lot out again if it needs redrafting!’

There were some funny moments with typical British humour – self depreciating/sarcastic with a good measure of ‘keep calm and carry on’. The Norwegian/American actor who really couldn’t act and Bill Nighy’s eccentric character both provided lots of humorous bits. And what would a war film be without a sing-song around the piano and a bit of a love story? I don’t cry at films, but this one nearly caught me out- like I said, I was absorbed fully in what was going on. A really good film! 

Photo: Film Advert 

Junior Doctors

Junior Doctors are being discussed a lot at the moment, partly because of the strikes about conditions but also because of the general election coming up. I’ve seen a lot of junior doctors in the last few years, mostly because I’m a good teaching/learning case with my Adrenal Insufficiency, so they often get directed to me to practise, along with med students. However, they also lack years of experience (because they’re juniors) and often feel they have a lot to prove, so some make rash judgements (e.g. I have a high attendance at a&e=most likely time waster, in their book), which means I’ve had my fair share of horrible encounters. I get it, they’re overworked, underpaid and have to do a ridiculous amount alongside studying and CPD. But that doesn’t mean they have the right to punch/kick a door closed in frustration, call me a ‘bitch’ to their colleagues (and I wasn’t by the way!) or stand outside in a corridor shouting at me into the treatment room, to use 3 examples. I’m a good patient, but even if I wasn’t, they’re the doctor and should work professionally. 
             Anyway, rather than make this post a rant about the junior doctors who have caused me grief, I thought I’d acknowledge the good ones who do exist and tell you about a junior doctor who was brilliant. I’ll call him Josh, and he was working in a&e. The triage nurse also happened to be the nurse in charge. I had sepsis markers along with the fact that I’m a red flag patient, so she walked into resus shouting instructions to staff, bumped me to the top of the list over everyone except cardiac arrest, kicked another patient out of the space and produced Josh and a nurse (who was also brilliant). Josh was a bit flummoxed because he’d been in the middle of something else when she’d pulled him off the case and hadn’t been given my chart yet because it hadn’t been printed. He wasn’t the most knowledgable junior doctor I’ve had, but here’s why I thought he was great: 
He told me his name. Not all junior doctors do this. It’s really, really basic but he made sure I knew his name despite the chaos that was going on, which made me feel more at ease.
He treated me like a human. I’m pretty calm in hospitals but this was my first time in resus and I’d worked out by the level of activity that I was seriously ill. Let me tell you, being critically ill with an illness that most people are unfamiliar with is bloody terrifying. Some junior doctors see you as an illness rather than a patient and do things to you without really saying anything or interacting- they’ve got a limited amount of time so they sometimes forget the whole patient interaction thing. But actually, it’s really important. He joked back when I tried to laugh about it as a way of coping. 
He didn’t pretend to know anything/everything. This is so important for chronic patients like me who go to hospital a lot. The nurse in charge had told me to get my injection ready in case I passed out before they could get hydrocortisone into me IV. He clocked this and my medical ID and said ‘you must come here a lot. I’ve only dealt with one case of Addison’s but your BP tells me you’re not a textbook case. And you’ll know more than me anyway. Anything you think you should get that I don’t do, let me know’. So I handed over my emergency protocol saying the drugs and investigations required and he read it thoroughly and asked some questions. Lots of doctors hate that kind of thing.
He didn’t have a God complex. He helped me get changed into the gown. That’s not really his job, a nurse or healthcare could do it, but my nurse was finding the drugs and fluids he’d just ordered and it would take longer for him to wait or find another one. So he did it. He also worked well with the nurses. Some junior doctors are so rude to them! 
He wanted to learn. He even said that he wanted to learn so that he could help the next patient with AI better. But not just from his books, from me as a patient and what it felt like to have the illness. I thought that was pretty cool. 

He came back to check on me and brought me my new doctor when he went off shift.
You tend to see the nurses a lot but doctors don’t spend a lot of time with patients. It made me feel looked after that he stuck his head in the treatment space when he walked past, even if it was just to say hi. 

He didn’t make me feel like an inconvenience
. Sometimes when things are busy, doctors cut you off mid sentence because you’re not answering the question with the reply they need. For someone like me, I can’t concentrate on what you’re saying if you do that, and the process actually takes longer in the long run. He didn’t make me feel hassled or stressed. In fact, he saw it as his problem for having not phrased the questions properly. 

He asked for help when he needed it
. He had issues getting a cannula in (my veins move a lot) so he got the nurse to do it. Then made a joke about it since that was our ‘thing’ by that point. Lots of junior doctors continue to stab you beyond the 3 strikes, which isn’t great. 

He worked fast but was calm
. I’ve had a fair few doctors panic around me because I’m unusual. They do a good job covering it up, but I’m also quite good at seeing through it from having been a teacher. He had a calm air about him which was reassuring. 

I asked him to double check some of his treatment plan with the consultant and he did
. I needed IV antibiotics fast but I have allergies and I’ve had a seizure in the past due to doctor error. It’s made me wary of drugs I haven’t heard of. So I was grateful that he went and checked when he wasn’t sure about interactions rather than telling me he knew best, particularly as I was still in ‘the danger zone’ so he needed to move fast. It’s not uncommon for doctors to pretend to ask the consultant and give advice which is completely wrong- they tend to look quite sheepish when challenged. 

I was informed about my care and felt involved
. I like to know what’s happening because I’ve had a few doctors get it really wrong and almost kill me, so I feel the need to ‘check’ some things. When there was a delay with the antibiotics, he came back to explain what was going on and why. Again, this might seem basic, but you’d be surprised how often people ‘forget to tell the patient’ and wonder why we haven’t moved/been to x-ray.
         I can remember his name and face even though it was a long time ago and I was pretty out of it. He had that big an impact on the way I felt about my care. 
        I only really remember the excellent doctors or the terrible ones, because I’ve seen so many. Sadly there are probably an equal number of terrible ones on my list as excellent ones. But not Josh. It might seem like common sense but it’s usually the common sense stuff that gets put to one side when doctors are under pressure. I haven’t had a junior doctor like him since, partially because I mostly see consultants now, but I’d love to have more Josh-like junior doctors treating me. 

Doing a Sleep Study

Last week I saw a consultant to try and work out why I don’t sleep very well. No matter what time I go to bed or what I do to relax, I wake up between 1am-3am most nights and stay awake, plus I get up several times extra because I feel ill, or need to eat or go to the toilet. My average sleep is about 4 hours a night. Sometimes I’m lucky and get 6 hours, other times I get as little as 1 hour. 
    One of the things the doctor wants to rule out is Sleep Apnea. Sleep Apnea is where the muscles in your throat/air pipe collapse on themselves while you’re asleep, causing you to stop breathing temporarily. Your brain recognises you’re not getting enough oxygen and wakes you up suddenly to get rid of the obstruction. So it’s a two fold problem- you’re not getting enough oxygen and you’re waking up a lot, both which make you feel tired during the day. 
   It sounds pretty dramatic but it’s not life threatening because the body is clever and wakes itself up. I’m being tested for it because I describe waking up as ‘feeling like I’ve been electrocuted’ and because I wake up so often. The way to test for it is to do a sleep study. 
   Technology means you can do this sleep study at home, which is good because it’s more indicative of an actual night’s sleep- no one sleeps well in hospital! It does, however, make you look a bit like an ood from Doctor Who… I’m not going to share a photo because it’s possibly the least flattering photo of myself I’ve ever seen! 
    I had to pick up the equipment from the hospital and have a quick demo as to how to put it on. The consultant told me it would be a sats probe and that was it. Nope, it was a lot more complicated! The easiest bit was the sats probe which you put on your finger, which measures your oxygen level and heart rate. That’s attached to a watch-like thing which records the data. Then there are two small ish boxes- you clip one to the top of your pyjamas so it’s resting on your heart and secure in place with an elastic strap around your chest and the other goes over your diaphragm, also secured by an elastic strap. Out of the top box comes a nasal canular, which is the nose prongs people usually get oxygen through. This is measuring how you breathe though, so no oxygen goes through it, which makes it more uncomfortable. That was the most annoying part for me- I hate nasal canulars even when I actually need them! 
   Thankfully I didn’t have to push any buttons, the tape started itself at 10pm and stopped itself. It was a bit strange though because the chest pack just lit up with a timer on it, a bit like when people have bombs strapped to them and they’re suddenly activated on TV! The battery warning light started flashing at 2am and it stopped telling me my sats, so hopefully it didn’t die and I’ll have to do the study again. 

   The recording will tell us whether my oxygen levels drop overnight and whether I stop breathing. Oxygen levels should be 94+ (out of 100), anything less than that and the alarms would be grumbling and flashing if you were hooked up to a machine in a&e. One of my weird endocrine traits is that my o2 sats drop when I’m feeling ill, which meant mine were between 92-96 most of the time because I was already having a ‘weird’ day. That’s not a bad thing though for the test- it might help them work out what’s going on even if it’s not sleep apnea. Obviously I don’t know what it said when I was asleep, because I was asleep! 
   Sod’s law means that it was one of my better nights in terms of sleep! I only got up 6 times, which is pretty good for me and my symptoms weren’t too bad overnight. There was a questionnaire I could indicate this on though, so they don’t just rely purely on what the tape picked up. I thought I’d find it more difficult to sleep with it, but I’m pretty used to trying to sleep with a nasal canular and sats probe from when I’m in hospital, so it was ok as long as I didn’t sleep on my front and lean on the two boxes. I had to return the equipment in the morning, the hospital will analyse it and decide whether I need to go back to that consultant or whether my GP needs to rethink. 

   I wasn’t visited by Dr Who to be returned to planet ood (or wherever they come from), but it was definitely one of the stranger tests I’ve done! 

Startle Response

Adrenal Insufficiency means I don’t have a proportionate one… I was trying to explain it to my husband and it occurred to me if he doesn’t fully understand it and I spend the most time with him, other people wouldn’t get it either. Hence this blog. For example, I get really annoyed by sudden changes in direction from what I’m expecting when he’s pushing me in the wheelchair, or why I hate the TV being ‘too loud’, even when it’s not.

A startle response is when you get a bit of a shock from something changing from what you’re expecting. It’s on a scale, so minor things include dropping something you’re holding to something more major like someone making you jump by creeping up behind you or swerving to avoid an accident when driving. It also depends on how tired or aware of your surroundings you are as to how your body reacts to being startled.

In a person without adrenal insufficiency, you might feel a slight adrenaline surge when something happens and cortisol kicks in and regulates what’s going on to a proportionate response. So you drop the book you’re carrying and it lands near your feet and you think ‘oops’, but by the time you’ve picked it up, you’re feeling normal again. If you’re feeling tired or worn out, you might feel a surge of emotion like irritation or frustration, but, again, it’s usually short lived. In someone with AI, you have the surge in adrenaline, but you don’t have the cortisol, which means your body starts to react in the same way as if it were a lot more serious e.g. like just avoiding falling down the stairs. It keeps making adrenaline in random little surges until it works out that the ‘threat’ is gone, and it’s not short lived. Something really basic like that makes me feel a bit sick and like I’m going to pass out for a long time afterwards.

That’s for something really minor though. Imagine if someone pulls out in front of you when driving. My husband would brake suddenly and beep the horn, like most people would. You get that surge of adrenaline and emotion following, but the emotion sticks around for a bit longer because someone was an idiot, and, in more severe cases of ‘near miss’ (or road rage), someone without AI might feel a bit shaken up and jittery for a little while afterwards. Some people might need to pull over and take a few deep breaths to calm themselves before being able to carry on. In me, I have the same response as though (what I imagine anyway) someone has had a gun to my head and they’ve decided not to shoot. Part of the danger has gone away, they’re not holding a gun to my head anymore, so I feel relief in the same way and have a massive surge of adrenaline, but my body doesn’t recognise the danger is over because the ‘gunmen’ are still in the room shouting at me. So my body goes into overdrive and starts seeing threats in everything, even the small things. My senses are heightened and I’m on red alert. My heart would beat really fast, there’d be a lot of adrenaline, I’d be shaky and sweaty and probably cry. Some people would vomit or faint in that situation because of the amount of stress they’re under from being in a dangerous scenario (that’s all the start of adrenal crisis). Except there’s no gunmen for me, my life wasn’t really in danger because my husband reacted and put the brakes on, but my body doesn’t see it that way. It’s not an emotional response to what’s happened, it’s a biological one.

The thing with life is, you can’t mitigate against every little cortisol draining scenario. Taking my tablets is like filling a glass with water and things which startle me is like tipping it out or drinking from it. If I don’t fill up the glass (take more medication) then when the glass is empty, there’s nothing left and that would mean I’d go into crisis. If the glass gets a crack in it and pressure starts to build because I have a lot of stressful situations in a short time, there’s a chance that even the smallest thing might cause the crack to weaken and all of the water come rushing out at once. Or if I’m already having a bad day, the glass isn’t made out of glass anymore, it’s made out of cardboard where water is slowly seeping through the sides as well as emptying and it could all fall out the bottom in a soggy mess. But it also might not, and it’s hard to predict when and how things will happen.

The way I get around it, is I try to ‘catch’ my emotional response to things before that exacerbates the biological response further, which is hard- and it’s only a fraction of what goes on, but emotion is the ‘bit’ I have some control over. I try not to get sucked into small things like feeling annoyed after dropping something, for example. I also try to predict the small things which might happen so that I’m mentally prepared and the startle response is less extreme. So if my husband is pushing me in the wheelchair, I try to work out the path he’s taking, which is why I get so wound up when he changes it or stops suddenly. Or likewise with the TV- if we’re watching something violent or thriller- ish, I ask him to turn down the volume so I jump less. He’s also got quite good at warning me when things might happen! Or we don’t watch things which might make me jump if I’m already having a bad day, or I don’t watch them at all. The trouble with making predictions is that it’s not actually a helpful thing to get into the habit of doing if you also have depression because it can lead to catastrophising small events which feeds your depression. It’s finding the balance between safeguarding yourself for AI and making things worse for your mental health, which is bloody hard!

This is also why I don’t find certain jokes funny. I turned the washing machine on once after my husband loaded it and he said ‘did you remember to take my phone out of my pocket first?’ To him, this was clearly a joke because he’d put the stuff in, I just pushed a button, but to me, my stress response was as if he’d told me he’d been in a car accident and had gone to hospital. It took me a few good hours to get over the prank, even though it was essentially nothing! Or if something serious does happen, like when my friend was actually in a car accident or when my niece was critically ill, it’s helpful to me if I’m told after I’ve taken hydrocortisone so my body is more equipped to deal with the shock.

I’m not sure my husband fully understands it yet, because it’s a hard thing to describe! Especially because it’s such an extreme reaction to seemingly small things. But suffice to say that there’s a lot going on in the background with your body that you don’t really fully appreciate until there’s a fault in the system somewhere.

Identity

If you had to describe your identity in one word, what would you use? I did a bit of an experiment and most people used a noun rather than an adjective. E.g. I’m a mother or I’m a teacher. Which got me thinking, what’s my identity?

I’m not a mother, I’m not a typical wife. I’m not a student. I’m not part of a particular religion enough that I can say that’s my identity. I’m not a teacher or musician anymore and I can’t say I’m a sportsperson. I suppose I could call myself a knitter. There’s lots of things I’m not, but what am I? It reminds me of the game ‘Guess Who?’ where I’m flipping down the people, working out what I’m not, so hopefully it’ll reveal who I am. Hopefully not some bald, old guy with glasses! 😉

Identity is important, it’s what you associate yourself to be. It gives you purpose and makes you feel like you belong. Most people choose their identity to an extent, but my identities and my future ones have currently been taken away from me. People change and identities evolve but most people can shape them into an identity that suits them, or they move from one identity to another e.g. from being a student to a profession. It’s different having something forced on you, like through illness or something like redundancy, or indeed if you feel like you can’t ‘get out’ of a perceived negative identity e.g. Drug dealer.

I refuse to have my identity as a ‘person with a chronic illness’, which is where a lot of other people seem to want to ‘put’ me identity-wise. Mostly because I don’t like to be told I’m ‘inspirational’ because I got out of bed that day (which has happened). That’s not inspirational, by all means call me inspirational, but for something that’s actually inspiring! Not just because I exist with a chronic illness- my charming and cheery disposition while being admitted to a&e, for example (it’s a line from Mary Poppins, before anyone thinks I’m being big headed 😉 ). There’s lots of memes that say ‘don’t let your illness define you’ and equally there’s a lot of people who say that they’re proud to have their chronic illness define them because it’s a big part of their life. I have a chronic illness, but that’s not my identity. I want to be known for other things as well as it. I see it the same as saying ‘I’m female’ or ‘I’m nearly 30’- it’s a fact, the nature of it impacts on my life in the same way other factual things do, but it’s not a characteristic of me, even if it takes up a lot of my time.

I think that’s the point lots of people miss when it comes to identity, me included- characteristics or traits. Our identity is culturally something that we can constantly identify with. So someone is always considered a mother, or a teacher even if they’re not physically in that role at the time. Which is weird that we want to demonstrate our identity with a noun, when we could choose an adjective instead. People might not be consistently the same adjective, but then they weren’t when they were labelling themselves as ‘a something’ either. This works better for people like me, who can’t ‘be something’ in the same way as everyone else.

So what am I? I like to think of myself as kind, empathetic, resilient, creative, friendly and enthusiastic. I might not be all of those things all of the time, I’m most definitely moody, stubborn and grumpy a lot too! But my identity isn’t then linked to my career or ‘purpose’ in life, it’s driven by the type of person I want to be. It allows me to think that I can choose what characteristics I can be. I’m not supposed to act in a certain way because ‘other teachers do’ (or whatever). I can change or add in new ‘identities’ as and when things change. You can identify yourself as a doctor or a performer, but it’s the qualities of the individual which make up the profession, not the other way around. I can’t identify with a profession, but I can choose what characteristics I want to nurture in me and make my identity that way. I can (and do) choose a positive identity, rather than a twisted, evil, or bitter one.

A noun seems quite fixed in terms of identity. An adjective seems a bit more free and unpredictable. Life isn’t predictable so I don’t see why something as important as identity should be seen as something so permanent or why people should feel the need to conform to one. There’s a great bit in the Jungle Book that I love, where Mowgli is fighting the tiger and Bagheera says to him ‘why are you trying to fight him like a wolf? You’re not a wolf, you’re a man, fight him like a man’. Mowgli had tried to fit in as a wolf all of his life, but it was human skills which saved them, despite the fact he’d tried really hard to develop his identity as a wolf. I might become ‘a something’ again at some point in the future, but for now I’m going to cultivate skills and attributes I want to have as part of my identity rather than trying to find the closest noun/profession/person which vaguely fits.

Seeing a New Doctor

Tomorrow I see another consultant. It’s been a couple of months since I’ve seen a different consultant/team from my ‘normal’ ones, so I don’t really know what to expect from this one. I do, however, nearly always feel the same before going to see someone new.

I don’t have a clue how this specialty works.

The problem with having a rare illness is you have to do a lot of reading about it and get clued up, mostly because you’re essentially completing an a-level equivalent in science by just turning up to an appointment. The last time I saw my endocrinologist he said ‘I’m really impressed you’re following this because I tried to explain it to some Junior Doctors and they glazed over way before you did‘. Tomorrow I’m seeing a respiratory/sleep consultant. I’ve seen many respiratory doctors and have had pretty much every respiratory test under the sun, but this one is different, they never involved sleep before, and I don’t know what to expect. My adrenal insufficiency makes it hard for me to keep up in conversations at the best of times, but I feel like I should have prepped more for the appointment, even though there’s literally nothing I need to do except turn up.

I want to feel hopeful but don’t at the same time.

I would love it if he turned around and said ‘aha this is what it is and this is what you need to do‘. However, the likelihood is he will order tests or studies or ask me to trial something. So there probably won’t be any answers tomorrow. But after getting about 4 hours sleep on average a night for the past 3 years, I would love to get a good night’s sleep! So part of me does feel hopeful deep down, even if I know it’s an unrealistic expectation.

Hopefully he won’t call me ‘medically interesting’, ‘an enigma’, ‘not normal’…

People get excited when they read my diagnoses and tests results because my body basically does the exact opposite of what it’s supposed to do. But I wish my body would cooperate and read the textbook properly before appointments so that I don’t have people sitting there telling me they’ve never seen one of me before!

I hope he knows what adrenal insufficiency is.

The last new consultant I saw didn’t have a clue so the first 20 minutes of the appointment was me explaining what it is and her asking questions. Which is really frustrating because the appointment should be about them asking me questions to work out what’s going on rather than me explaining a diagnosis I already have. I get it, they need the info to do their job, but they could read up a bit first.

I hope I can answer the questions I’m asked.

I ‘forget’ that a lot of the things I put up with each day aren’t ‘normal’ until my husband or friend interrupt and say ‘actually, this is what happens…’

I’m worried he’s going to send me away without any help.

This stems back to pre-AI diagnosis where a few medics told me it was ‘all in my head’ and I was having to fight hard to get help. So I always worry that new doctors ‘won’t believe me’ when I describe my symptoms and I’ll have to convince them.
I don’t know what’s relevant to him.

I have a complex medical history. I can’t remember every hospital admission, consultant, medication etc because it’s impossible to. I have no idea what he’s going to want or need to know though. Every time I see a new Doctor, nurse or team, I have to go over my medical history from the start with them- it’s a normal part of accessing healthcare, but it’s really hard to know which bits to include or exclude. I’d be there all day if I told the whole story from the beginning!

It’s an early morning appointment and I really struggle in the mornings, so I’m worried about managing it.

Hospitals involve a lot of walking, noise and having to function. It’s a lot for me to be able to physically manage, never mind the actual appointment itself. I’ll also find it stressful going there, not consciously stressful, but subconsciously enough that it’ll trigger something adrenal. It’ll wipe me out for a while afterwards, more so if the appointment isn’t a positive one.

I do feel positive about the appointment because it should at least help rule some things out at some point, which can sometimes be as helpful as getting diagnosed with something. It also helps that this one doesn’t (or at least I’m not expecting it to!) involve a life-threatening condition, which takes the pressure off ‘finding an answer’ before I keel over. I’ve had some good experiences at this hospital, and, like I said, I have no idea how this speciality works, so I’m going to try going with the flow at the appointment rather than working out everything that could go wrong in advance!

Independence & Needing a ‘Babysitter’

I used to be really independent. I’ve lived abroad, travelled to many countries, negotiated my way through different languages/gesturing madly by myself… Not a lot phased me at one point.
The thing with independence is you have to keep practising it for it to be effective. I look at how unindependent I am now and I’m pretty horrified. I don’t leave the house by myself, I can’t cope at home by myself, people take me places and do basic things for me and I really, really get wound up about having to make a phone call. It’s not even a case of telling myself to ‘get on with it’ like I used to in the past, because if I do that and get myself a little stressed, my body reacts even if I don’t want it to and I end up in a big mess. So I’m not very independent at all now, but a lot of it is an unfortunate outcome due to circumstance rather than me being happy about it.

This week my husband had to work away overnight, which meant I needed a ‘babysitter’ and I went to a friend’s to sleepover. Some of this is because I can’t manage to make meals, tidy up, or I need help doing things because I can’t do them safely, but most people would assume that I could go to someone’s house for tea and then go to sleep in my own house overnight, which would be a reasonable assumption- I’m an adult, I’d be asleep and it’s only one night. What could go wrong?!
Lots is the answer. Night time is when I don’t take any medications (normally I don’t anyway, I have been this week). I haven’t spent a night by myself in years. If anything is likely to go wrong and I’m going to need help, it’s probably at night- most of my hospital admissions are at night. Earlier in the week involved a middle of the night phonecall for advice to a nurse friend because I woke up suddenly not feeling well and couldn’t work out what I needed to do. It’s a feeling I can’t fully describe but it’s kind of like running out of breath when you’re under water and desperately trying to get to the surface. You’re not really with it and you have to fight hard to keep yourself heading upwards rather than just giving up and floating underwater. I know for sure I couldn’t do my injection myself in that state if I had to. So the other side of independence is to do with confidence. Confidence is key to being independent, I’ve discovered.

Confidence is something that can take a long time to build up but seconds to destroy. Sometimes, it can be as simple as a flippant comment that someone makes or minor changes to a plan. They’re not big things to people who are independent and have confidence, but they are if you’ve had to build yourself up to do something in the first place. And because the only way you can get independence and confidence back is by pushing yourself bit by bit out of your comfort zone, very minor things soon become big things and make it less likely you’re going to try again in the future. 

A tough love approach might work if you want to get someone to do something as a one off, to prove that they can do it. So if someone has a fear of heights, making them do it might shock them into realising that it’s not that bad. But if you want someone to be able to do something repeatedly afterwards, tough love doesn’t necessarily work. It would probably shatter any confidence left into a million pieces. I could make myself stay at home by myself (which would be stupid anyway, because I physically wouldn’t be able to manage it), but the stress alone of having to do so would be enough to set off my fight or flight and then I’d definitely feel ill and alone and potentially have to sort out ambulances and hospital myself. Which would mean I wouldn’t want to do it again in the future because I’d remember those feelings of panic, which would make me twice as anxious than in the first place. It’s not just a lack of confidence with me, the stakes are irreversible if I get it wrong. Why don’t people leave kids alone by themselves? Because they can’t look after themselves, they might need help and lack the mental competency to do so themselves or they might hurt themselves. These things are all true for me at the moment. Hence needing a babysitter.

Instead of tough love, someone sitting down with you and helping you put together the pieces is more helpful (my friends are good at doing this for me). Sitting and looking at the bits waiting for something to happen or getting someone else to do all of the work for you are both unhelpful in the opposite way- it’s important to try to be as independent as possible within your own means of what you can manage. It’s finding the balance between support but not getting someone to do it all for you versus nudging in the right direction but not bullying. From having been a teacher and coached hundreds of kids through performances on stage, there are very few kids I used a tough love approach with because it tended to cause more problems than it solved. I didn’t lie, I told them if there were things they needed to do differently, but I didn’t tear them down while I did it and I always made sure I was there to help pick up any pieces.  

Realistically, building confidence and independence isn’t easy for anyone. Everyone has something that they lack confidence in, it’s just the degree with which it impacts on your life which differs. Some things I find difficult might appear trivial to others and likewise I have no issue with some tasks which other people find challenging. At the end of the day, it’s our previous experiences which have shaped our confidence now, so everyone is different. For me, sleeping over at my friends’ house meant that I knew there was someone nearby if I needed help and they made me meals and looked after me, but it didn’t feel any different from hanging out with my friends normally. I find it hard to ask for help and hate feeling like I’m a burden (my friends don’t make me feel like that, it’s my issue based on my previous experiences), so asking for help and receiving a positive outcome helped me regain a little bit of my confidence and will make me more likely to ask for help again in the future. 

Thanks to my lovely friends for having me stay over 🙂