What I learnt from watching ‘Brain on Fire’

I’ve been doing a lot of lying down browsing Netflix recently so have been watching some random documentaries and films. One of the ones I watched was a film called ‘Brain on Fire’.It’s about a woman who starts to experience neurological symptoms like seizures, absences, psychosis, mood swings and eventually stroke like symptoms. But no one can work out what’s wrong with her and they go down the ‘it’s psychological’ route and try to get her committed to a psych ward. Her parents keep fighting for her and found one doctor who believed her and eventually she gets diagnosed with a rare autoimmune brain disorder. It’s treatable. It’s also based on a true story. The reason I found this interesting was because before I got diagnosed with adrenal insufficiency, I had many doctors tell me that they thought my problems were psychological and refused to treat me- I got made out to be a drug seeker for steroids at one point. Like her, I felt like I was dying and no one was listening. And, in the same way, the only reason I got diagnosed was because one respiratory doctor said ‘I believe you’ and spent 2 weeks running every test possible until a completely random one showed I had adrenal insufficiency, which wasn’t even his field of practice. But before that, I was treated like I was mad. People ‘humoured’ me when I went to a&e for a while, but the more I showed up (every week at one point) and the fact that one doctor wrote about my ‘clear psychological issues’ on my file meant that people became more and more rude and point blank refused to treat me. But even if I was experiencing psychological symptoms, there’s no need to treat me like that, clearly I still needed help which I wasn’t getting. Although, chronic illness humour, it did turn out that the problem was ‘all in my head’ since my pituitary gland is pretty defunct and it’s located in my brain… 😉 It’s still difficult for me to look back and say ‘I was treated badly’, even though I now know I *was* treated badly. It’s left a lot of (now, ironically, psychological) damage about seeking help in healthcare because I really was dying and no one would listen. I’ve always tried to see it from other people’s perspective and think maybe it’s because I didn’t look sick enough, or maybe I didn’t use the right words to describe it, or maybe someone was having a bad day and missed something, or they lacked experience or I said something wrong which threw them… But there’s empathy for other humans and human error and then there’s taking responsibility for something that wasn’t my fault. Watching Brain on Fire meant that I could see some of my experiences portrayed from an outside perspective. And, actually, there were many opportunities for people, whether it be colleagues, friends, family or doctors, to see that clearly she wasn’t right. Yeah, some of her behaviour might have been weird or ‘lazy’, but instead of showing some empathy and sitting down and saying ‘this isn’t you, what’s going on here’, she was told she was being selfish, that she needed to try harder, she was shouted at to see if she would ‘snap out of it’, people were impatient and she was ultimately worn down to a point where even the inherent natural instinct to fight to survive got turned off. But the scary thing is, that her and my experiences aren’t all that uncommon. When doctors can’t find answers, they turn to psychological problems. Lots of people with adrenal insufficiency are committed to psychiatric units first and then are only diagnosed when they’re in a coma. Part of it is that doctors don’t like things they can’t solve, and mental health has a nice broad spectrum, but part of it is that some are too arrogant to admit that they don’t know everything. I find this really baffling in this day and age since more and more people are surviving things they didn’t before which means there are going to be new and rare diseases being diagnosed which we didn’t have before. Therefore, just because it doesn’t fit into one doctor’s experience of illness, doesn’t mean the problem isn’t a physical problem rather than a psychological problem. So what I learnt from watching this film is that I’m not responsible for the way my doctors treated me. Even if I had said something wrong or acted weirdly, they were my doctors and I was the patient- they had a duty of care to me regardless of the root cause and they really let me down. Seeing someone else experience it first hand in visual form (rather than just reading similar experiences) gave me the chance to fully acknowledge that.

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I sold my car today

I haven’t driven for about two years so I don’t need a car. The last time I drove, I ended up having an adrenal crisis at my chiropractor appointment, we had to call an ambulance and I got blue lighted to resus. I eventually was with it enough to text my husband and tell him I’d gone on a slight detour home, he picked up my car later while I stayed in hospital overnight and I decided that getting stranded places and having to get my car home later was happening too often and I probably wasn’t safe to drive anymore. My illness is too rare for the DVLA to know enough about it but when I potentially had sleep apnea, I was told I shouldn’t drive because I ‘might feel tired’. I think that says it all really!

That wasn’t an easy decision. I can’t walk far and I can’t stand up for long without getting symptoms, so I can’t manage public transport, much for the same reasons as I can’t drive- Factoring in a journey means I can’t do what I need to effectively eg medical appointments and I’m not very safe doing either the outward or return journey by myself anyway. The physical exertion of organising myself has proven to be dangerous too many times for me to do it. Aside from that, it’s too far for me to walk to my local bus stop or train station. And we can’t afford taxis. So my husband and a friend on maternity leave take me everywhere at the moment (thank you!).

But I don’t think a lot of people realise the symbolism behind it. I can’t drive. I can’t take the bus. I can’t go anywhere by myself without having to ask someone to help. I don’t leave the house and go anywhere alone. Can you imagine what that feels like to a) be reliant on someone to do anything? B) not ever leave the house by yourself and have some time to do stuff by yourself? C) to lose all independence? It’s not a case of I’ve just lost my license, which happened before for a year when I had a seizure, I can’t go anywhere by myself because I can’t walk or take transport. This is something elderly people struggle with and they’ve at least got to an age where they’ve had years of independence prior. I’ve lost all that aged 30. It makes you feel really helpless.

It also destroys your confidence. Transport hubs are huge places, so even if I had one nearby, it’s still too much walking. The assistance you get on trains now is very poor since budget cuts mean there aren’t guards on trains anymore, so no assistance. And standing in a queue on a platform is a nightmare when you’re constantly trying to measure how long you have left in you to stand up for before you pass out, you then have to work out tickets and money which feels like it’s in Japanese by this point, then you have to find a lift because you can’t do the stairs, but the lifts are always so much further away than the stairs so do you just try and do the stairs or walk further, what if you can’t get a seat on the train, then you have to ask someone to move and there might be an argument… I purposefully wrote the last bit without decent punctuation so that it might help get across how traumatic I find doing these things by myself.

And that’s why I don’t do them anymore! Because once I’ve tried to contend with all of that, I then have to manage my illness and it fighting back. It’s not a case of it just happening on a bad day, this happens every time I go out by myself, so it’s not safe for me to.There aren’t many more things terrifying than being alone and knowing you have to call an ambulance because death is a real possibility.

1) you have to find someone to help. But you don’t want to annoy anyone or seem melodramatic

2) you need to explain quite quickly what’s going on so that if you pass out, someone might know. But it’s particularly tricky to string a sentence together when you feel like you’re going to pass out

3) it’s easier for me to ring an ambulance because I know what to say. All needing to be done before I can’t function anymore

4) I should also do my injection because that will keep me alive until the ambulance gets there. But it’s a stupid fiddly thing and needles and syringes freak out other people.

5) the whole drama this type of event causes is enough to stress out someone at the best of times. Let alone when you’re alone, not at home and you’re surrounded by strangers. And you don’t make the stress hormone which is what’s trying to kill you in the first place. So getting anxious is the worst thing you can do!

That’s why why I don’t go out by myself anymore. That’s why I don’t drive. And that’s why I don’t try journeys by myself.

So selling my car is symbolic of having lost my independence completely. I lost it a long time ago, but I don’t think some people fully appreciate how losing the ability to go out by myself is a big blow and how big a knock on my self confidence it’s been.

Just some info for AI people: in the U.K., you don’t have to surrender your licence or report it to the DVLA unless you drive a HGV. However, everyone (even people without chronic illnesses) has to make a decision as to whether they are fit to drive whenever they drive. I decided I’m not fit to drive because my AI is unstable and I feel dizzy/fatigued most of the time and I didn’t want to be a danger to myself or other road users.

The difference between mental health & emotions

I don’t really like a lot of mental health awareness campaigns because I feel like they don’t actually raise much awareness (ie they say ‘talk to someone about your mental health’ – what does that really mean?) but also they target the wrong things.

Acknowledging that mental health has a huge impact on physical health is important. Recognising that mental health problems can be more disruptive to your every day life than some physical illnesses is also important. But we live in a country where it’s considered un-British to answer the question ‘how are you’ honestly, and displays and discussions of emotions are actively discouraged.

Instead, when someone is struggling with something in life, things get bottled up and eventually come out in an uncharacteristic (for that person) way. Then other people in their life might encourage them to go to the doctor to ‘get help’ and they’re potentially diagnosed with a mental health problem like depression or anxiety.

But here’s the thing. You can be depressed but not have depression. You can be anxious but not have anxiety. You can be restless but not have ADHD. Those things are all emotions which, as humans, we all experience from time to time. Sometimes they crop up regularly in a short period of time. It doesn’t necessarily mean you have depression or anxiety permanently.

So the first reason I don’t necessarily like mental health awareness campaigns is because they sometimes imply that you’re either ‘mentally healthy’ or ‘mentally ill’, when, actually, somebody might be having perfectly normal and natural emotional responses to something.

Circumstance and situation makes up a lot of how we feel about something. I watched a documentary where a psychiatrist worked with prisoners and she said that part of her job was assessing whether inmates were depressed because they’re in prison, so they’re naturally going to be feeling low in mood, or if their depression was long term and chronic. There were things she could do to help inmates struggling to come to terms with their situation, but she said she treated those differently from inmates with a diagnosis of depression. Who wouldn’t be depressed at some point when they’re in prison? It’s a normal, emotional response to a terrible situation.

Therefore, the second reason I don’t like the awareness campaigns, is because they make talking about emotions and state of mind a way bigger deal than it should be. It should be ok to admit that something is hard or upsetting to someone else without being told to go to your doctor or be told you might have depression. I’m not saying don’t go to your doctor when you experience distressing emotions, but why medicalise something when it doesn’t necessarily need it? People get back ache for no physical reason, they go to their doctor to get it looked over and then they check in with their doctor if they still have a problem in a few weeks- it doesn’t mean they get diagnosed with something there and then.

Medicalising something implies that you should be/can be ‘cured’ of something with medication. Mental health doesn’t work like that, it needs constant work and attention. It’s like going to the gym for 6 months, getting the body of an athlete and assuming that it’ll stay like that for the rest of your life even if you don’t do any more exercise. People with long term mental health problems have to constantly manage their condition in the same way that someone who has asthma might have to. Some periods of time will be better than others and specific things might trigger it, much the same as with asthma, but it doesn’t just go away overnight like a cold does. You don’t have a cold forever just because you’ve had it for a week, and you don’t just get over depression because you did a 6 week counselling course and took some antidepressants.

The third reason I don’t like awareness campaigns is that they can end up trivialising chronic mental health problems in their bid to raise awareness to the masses. If you’ve got severe depression you’re not likely to seek help when you’re suicidal if there are people who seem to be coping with it better than you when they possibly shouldn’t have been diagnosed with depression in the first place. Because the whole nature of mental health illnesses is that it messes with your head and you think you’re not deserving of help at the best of times, never mind when you’re comparing yourself to other people. And, unfortunately, it’s these people who are most active in vocalising about their depression/experiences on social media or in conversation. (I’m not saying it’s a bad thing, I’m just saying it can be unhelpful to vulnerable people).

Because we’re British, we’re supposed to be positive and share inspirational posts and not be negative at any point. Well that’s just stupid. Our bodies wouldn’t be made with the ability to have negative emotions if we weren’t supposed to experience them at some point. It’s healthy to get mad, to cry, to have a rant. All emotions are temporary, even happy ones. It’s when the emotions start to become permanent and prolonged and an engrained way of thinking that we need to check in with our mental health.

‘Well, this is a bit rubbish’

I have to send off some medical evidence for my PIP (state disability benefit) application, which I hate doing anyway because it takes me days and brainpower I don’t want to be wasting on boring but necessary stuff. But I also find it a tad depressing.

It’s a bit rubbish really. Obviously I live with my chronic illnesses every day but I only really focus on having adrenal insufficiency, and that’s only because that’s the one that can kill me fast, so I have to really. It’s also the one that is triggered by all the other ones. Some people like to list all of their illnesses on their blogs at this point for various reasons, but I don’t. Not because they’re a massive secret or anything, it’s just a bit rubbish to have it in glaring black and white. And my list of diagnoses is about a page of a4 in normal sized font. I condense it onto an A5 page though to make me feel better 😉

I try to manage them the best I can without it mentally changing my outlook. I’m not going to say ‘without them defining me’, because they do- they control everything I do. Like, literally everything from what I eat, when I sleep, what activities I do, my hobbies, my relationships with people… They don’t have to define the way I think about life though. Everyone has obstacles and hurdles to contend with. Just mine are permanent and usually a bit more drastic than the average person’s.

So usually I try to avoid dwelling too much on exactly what’s wrong with me and what conditions I have. It’s not until someone else tells me what’s wrong with me eg in a doctors’ letter that I kind of think ‘Jesus I look bad on paper.’ It’s probably easier to list the bits of my body which still work rather than the bits that don’t!

I could get angry about it all. Some of my conditions were made worse or I only developed because I had some shocking doctors- my insulin problems for example. I trained to be a teacher and I can’t do that again. Music was everything to me and I can’t play anymore (I’ve tried lots of ways, if I could do it without being in hospital I’d have worked it out! 😉 ) I lost half of my 20s and counting in ‘diagnostic stages’ and on waiting lists for scans and tests. But all that would happen if I woke up every day being angry about it is I would be miserable and still sick. It wouldn’t actually achieve anything and all the people who let me down wouldn’t feel any different, they’d just go on with their lives as normal because, realistically, they’ve probably forgotten about me.

So my current life plan involves get up every day and don’t die. Maybe crochet some animals in between. I’m not on the good career path or life plan I was on before but it’s ok for now. But seeing it all in black and white is, well, a bit rubbish really!

Easy Friendships

It’s very easy for me to get stressed out by interactions with other people. For lots of reasons: I feel like I’m talking a foreign language half the time so I struggle to keep up; I worry I’ve said something to offend someone or said something I shouldn’t have, even if there’s no evidence to suggest it; I overanalyse what people say to a ridiculous degree but I can usually only remember half the conversation so my mind fills in gaps with negatives rather than what actually happened… not to mention if there’s background noise, some kind of activity involved, it’s hot… lots of external variables mean I can find social things pretty stressful, even if the people are super nice. Sometimes, if I’m having a really bad day, I don’t text or message anyone because if I don’t talk to people I know I can’t misconstrue anything and get paranoid. The problem is usually the way I perceive it rather than anything anyone else has done. And I tend to avoid people who are a bit tricky or prickly anyway.

Why do I do it? Some of it is to do with my mental health and some of it is physiological. And the two kind of aggravate each other in a loop. At social things, I tend to try to put on a show that everything’s fine or I get excited to talk to people. Which releases a lot of adrenaline fast and means I then crash quite spectacularly later, usually about 11pm when my cortisol is getting low anyway and the overanalysing, overthinking and getting paranoid starts.

Today I saw my endo, which, although not social, has a similar trigger. So now I can’t sleep because I’m ‘coming down’ and going over the conversation.

Some people might just say ‘well don’t think about it then’ but it doesn’t work like that. I can do all the rationalising and CBT I want but that’s where the physiological bit comes in- if you were walking down a street and someone jumped out at you from behind a building and you thought you were going to get mugged, you’d have a surge of adrenaline and a stress response. If that person then turned out to be your friend playing a joke, rationally and mentally you would know that everything is fine, but your body would take a while to come down from that. That’s what happens when I ‘come down’ after social things. It’s weird, I know!

So this week I have been grateful and reminded of several ‘easy friendships’. These are people that I feel happy to have conversations with and don’t spend hours fretting about them afterwards. I might get over excited seeing these friends, like I did with some visiting at the weekend, but the come down was less than if I’d been anxious about it as well. I don’t feel like I need to justify what I do to manage my illness or what I’m eating to them, like I sometimes do with other people. I don’t mind asking for help or explaining what I can and can’t do to them. I’m happy to spend time with them even if my husband isn’t around, because I regularly check with him and say ‘do I need to worry that I said…’.

It doesn’t mean that I dislike other social interactions with people, I have lots of very nice friends who are really supportive and I’m slowly expanding my ‘easy friendships’ group the more I build my confidence back up. But it’s complicated and takes time. So thank you to my friends whether it’s been in real life or by text/message who have reminded me that some friendships are ‘easy’ and I can feel like my old self more afterwards again.

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 🙂

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 we treat children and adults with chronic illness differently

I mean this in two ways. The first being in our attitudes and how we view children with chronic or serious illnesses but also in terms of interactions with medics and healthcare professionals. Children should be treated differently because they have different needs, but actually, there are some aspects which I think could and should also apply to adults too.

Let’s look at how we view children vs adults with illnesses first.

It’s ok for children to act like themselves.

Children are actively encouraged to be childlike even when ill. If they’re laughing, joking or playing, people will rarely accuse them of faking being sick. Whereas adults who act like themselves or try to have a sense of humour tend to be viewed as suspicious and thought of as lying.

They’re encouraged to have a normal day.

If they’re in hospital, this means getting out of bed and going to the play room or playing with a play assistant. As an adult, if you ask to leave the ward or seem like you can function by yourself, you’re discharged ASAP to get the bed back whether you should be discharged or not.

Out of hospital, children might go to soft play or the park or out to eat. As an adult, I overly obsess about photos of me on social media causing me to get a backlash of criticism about how I’m ‘obviously feeling better’ or how I ‘can’t be *that* sick, clearly’. Children’s parents might hear ‘isn’t it wonderful that s/he’s able to play even just for a little bit’.

Adults aren’t ‘allowed’ to have good days.

If I seem to be doing ok some days, people ask when I’ll be going back to work or pass comments that I’m ‘better’. But they seem more able to recognise that children have good and bad days when sick in a way that doesn’t seem to translate the same when they think about adults and illness.

It’s not very often someone questions a child’s level of sickness.

If a child or parent says their kid can’t do something or needs something, we tend to listen and take their word for it. As an adult, I regularly have to justify my blue badge and ‘prove’ my disability and I’m regularly told I’m lying or over exaggerating.

Now thinking about how children are treated compared with adults when they are in hospital.

Wards and treatment spaces tend to be more friendly and less clinical looking.

There’s usually bright colours or stencilled animals on the walls. Lights are less harsh. Sometimes the consulting rooms don’t look like consulting spaces. Why are adult wards bare or just have a token, drab watercolour painting of some grainy old fashioned landscape? Even maternity wards are colourful in some hospitals and babies spend very little time there and can’t even see as far as the walls at that age. Lots of adults get stressed out by hospitals. A little bit of thought into the decor or structure of the spaces wouldn’t go amiss for us too. Plus I can’t be the only one who likes brightly coloured animals…

Tests and procedures are explained to children.

In a lot of cases, children can visit the scanning rooms or theatres beforehand to help them prepare and so it’s less traumatic. Obviously, if every adult had this the waiting lists would be even longer! But it’s not very often I get explained to me what will actually happen when I have a test/scan/procedure. I know in most cases what to expect because I’ve had so many, but I’ve learnt as I went along and very few tests bother me. However, I’ve had to ring the hospital a couple of times and ask what the test actually is for in the first place because all I’ve been given is a letter saying to report to a clinic for a ‘test/procedure’. If you’re only expecting one test then you can work it out but I shouldn’t have to play a lottery as to which doctor requested what test and when because I’m seen by 4 specialists- the least someone could do is tell me what it is so I can google it! Even better, a patient leaflet would be nice (only 1 hospital in the 5 I’m seen by does this) and, better still, a brief rundown by whoever is doing it on the day would be great. You’d think a conversation (hello my name is etc) would be standard if you’re going to be prodding a human in potentially intimate places, but it’s not always the case!

Time is taken to make sure the child feels ok about what’s happening

Kids get asked how they feel. I’ve been asked once in the last 6 months. The focus is on the medicine with adults, children are seen as slightly more holistic beings. If a child is crying, most staff will try to find out what’s wrong or help them feel better. I’ve been crying on wards before and had nurses clock me and walk the other way because they either don’t have time or don’t want to deal with emotions. Or I’ve had doctors who should know better stand up and open the door and essentially push me out because I’ve had a cry and they don’t know what to do with me. But feeling upset makes you feel worse which doesn’t help with any healing that could take place. Did you know that patients with HIV’s blood tests drastically improve when they feel more positive about their treatment? My psychologist told me that.

The other thing that baffles me is that children’s care just ‘changes’ overnight when they hit 18. Support they had is removed. They might have to switch doctors from one they’ve had all their life to an adult version (although lots of hospitals have been introducing transition schemes now because they’ve recognised this as a problem).

For some reason, we’re a lot more supportive and compassionate of children who are sick than we are of adults. There’s even a difference in the way we view teenagers with illness versus younger children. I don’t want people to pat me on the head and give me pity, I’d just like to feel that I don’t have to justify myself to everyone and that people actually care if I’m still alive the next day when I’m in hospital. Sometimes I feel like a number in the system or a bed number and I’d quite like more of the personal relationship with my teams that children seem to have with theirs.

Of course there are always exceptions- some children have nightmare experiences and some adults have amazing ones, me included on occasions. But it would be nice to feel a bit more like a human being when people interact with me about my chronic illness.

What I Learnt from Grey’s Anatomy

Spoiler alert!

Last week on Grey’s Anatomy (UK anyway), Dr Bailey had a heart attack. She thought she was having a heart attack long before she had visible symptoms and tried to check herself into a different hospital from the one she’s chief of surgery at. What I learnt was, her experience of trying to access healthcare was pretty similar to how I experience accessing health care. And she’s a (fictional) doctor! No wonder I don’t stand a chance sometimes!

She presented herself calmly at the desk and was overlooked and spoken to rudely. 

Now, this depends on who is working behind the desk and doesn’t happen every time. But, to be frank, if you walk into A&E and the first person who speaks to you is rude, grumpy and doesn’t make any effort to finish the conversation they’re having with their colleague to deal with you, they really shouldn’t be working somewhere where a lot of people are going to be walking through the doors feeling anxious and apprehensive in the first place. Also, they only work in the emergency department, the person visiting is clearly having a worse day than them since they’ve felt the need to turn up to A&E. So I don’t think it’s acceptable that the front facing patient staff be remotely rude, regardless of how calm and/or healthy they look.

She had to wait a while to see a doctor. 

Some people do have to wait. But heart attack should be right up there with ‘see now’. As should be my condition until I’ve been assessed properly. IE ‘this person could die until we know otherwise, let’s prioritise them’. Which means someone didn’t take her seriously at triage or they weren’t paying attention.

The doctor didn’t really take her seriously. Even before she had the tests.

She was made to feel like an inconvenience. The words ‘I’m pretty sure you’re not having a heart attack’ and ‘we’ll do the tests to reassure you’ were used. The ‘reassuring’ phrase annoys me. It basically means ‘we think you’re time wasting but you’re being a pain so I’ll do the test *because I have to*’ with an almost visible eye roll. But why? Do the people who actually don’t need to be there (twisted ankle) get given this patronising speech? I really hope they do. She was adamant she was right. Most people haven’t heard of my illness so if they haven’t pulled up my file and read my notes, they often think I’m being dramatic when I say ‘if I vomit I could die’.

The tests came back ‘fine’ and they still ignored her.

Treat and street. Lovely phrase. They didn’t look deep enough and weren’t bothered in trying to find out.

They blamed it on psychological problems like anxiety and stress.

Some people do have panic attacks rather than heart attacks. But if you patronisingly tell someone that what they feel isn’t real, it’s never going to help! A panic attack is still a medical condition. It’s not anywhere near as serious as a heart attack, clearly, but if you’ve never had either, how would you know? There’s a way of doing it and saying ‘you need to relax, it’s all in your head not physical’ is going to get the person’s back up every time. Mostly because the words ‘all in you head’ have been used. And what if it is all in their head? It’s still a problem. They’re still scared. And dropping a patient like a hot potato and pushing them out the door is going to make them feel even more scared and bewildered about what happened. And embarrassed.

But what if the doctors are wrong? And they’ve just told you they’re not going to help you anymore?

This has happened to me a lot. I’ve been stood crying at a nurse’s station on more than one occasion saying ‘I feel like I’m dying’ and no one would take me seriously. So I’d leave because I had no other choice and go back 2 days later with the same thing. Maybe I’d catch better staff on duty. Maybe I wouldn’t and get told it’s all in my head. Nope, turns out I have a life threatening, very time sensitive illness and it’s mostly fluke I didn’t die on all of those occasions. Fine, it’s a very tricky to diagnose illness, but it’s still not the point. A simple blood test would have set wheels in motion if someone had thought outside the box a bit.

Dr Bailey was having a heart attack. And the time it took for them to actually realise this meant that damage could have been done to her heart. Why didn’t they listen?

They blamed it on the menopause and the fact that she’s a woman.

Yes, those things come into play sometimes. However, women are often taken less seriously when they start to get angry or anxious because they have hormones which make them emotional. But if they present themselves calmly at the desk like Dr Bailey did and how I usually do, we’re not taken seriously because we ‘don’t look sick’. Can’t win.

They didn’t listen.

Bodies are weird things. There have been a fair few times where I’ve turned up to A&E not necessarily feeling any more terrible than I did before I went but because I had a feeling that ‘things were not going to end well’. And things usually escalated quite quickly after that. One time I rang my nurse who told me I was being silly and not to go to A&E and I should ‘take some deep breaths’. I decided she was wrong and called an ambulance and said I had a bad feeling to the crew. Thankfully the crew had a paramedic who knew me and said ‘she’s normally right actually, we’re taking her to A&E’ where a consultant very scathingly said ‘she’s not that sick, she’s sitting up and talking. Do a random cortisol test to reassure her and send her home’. That cortisol test came back as ‘undetectable’ and a different doctor admitted me and said if I hadn’t come in when I’d come in I could have been in a coma or dead pretty fast. Sometimes, you just know you’re in danger and have a feeling of impending doom. You can look at all the charts and lab ranges and machine results all you want, but maybe if someone is saying they don’t feel right it’s something that’s being missed by the doctor rather than the patient exaggerating or lying. Maybe it’s not and people are time wasting, but is it worth risking someone dying for the sake of an hour or two trying to suss it out?

So what did I learn from Grey’s Anatomy? I always assumed I was the problem when going to hospital, because I quite regularly have to argue, complain, ask for the consultant on call, produce lots of bits of paper backing up what I’m saying and be quite forceful with people all when I’m already feeling ill, feeling anxious and have an illness where stress can kill me. I don’t go in demanding attention and being bolshy, I start off calm and polite. While Dr Bailey isn’t a person, her character is a doctor and she had a similar experience to me. She knew her stuff and she still had to argue. It might have been fictional, but it really helped me feel less responsible and less like I was doing something wrong in the way I encountered people! Some people just aren’t very good at dealing with the patients in medicine, even if they’re good with the science.

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I’m well aware that this post could encourage comments about the NHS crisis, how the staff are overworked etc, but I’m talking about experiences which have occurred more than once and repeatedly, in different hospitals. So some of the things I describe aren’t just down to overworked, underpaid and exhausted staff, bits of it, at least, must be partly due to a working culture that has appeared in the NHS. I’ve also received excellent care (and I write about that too!).