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.


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!).


What I Learnt From Modern Family

Nothing profound about modern family life or parenting or living with other people anyway. Modern Family is an american programme about a family and their day-to-day lives and all the mishaps and adventures that come their way. It’s a comedy so a lot is over-exaggerated (it’s hilarious), but it got me thinking when I watched it the other day.

Cam and Mitchell are married and a friend stays with them, which they thought would be ok to start with and then he gets annoying because he interferes with their routine. He also tries to do ‘nice’ things for them, which end up ruining their theories or ‘plans’, which adds to the irritation. For example, he feeds them caviar for breakfast and serves a wine with dinner, both of which they’d been saving for ‘when they have something to celebrate’. But then as one of them points out, what is a good enough reason to celebrate?

Once you’ve held onto an object for so long and pin a lot of emphasis on enjoying or experiencing it ‘when something happens’, you risk never having the enjoyment or the experience of it full stop. Nothing will ever be ‘good enough’. And then the caviar will go off, or the wine will be corked and it’ll be wasted. Or you’ll finally decide on a moment, but the hype in your head will never be as good as the actual thing, so you’ll still feel disappointed. Whereas, if you’d enjoyed the caviar or the wine in the moment when it was still new and shiny, you would have enjoyed it and not felt disappointed.

Just because something is expensive, has status or was given as a gift to you doesn’t mean it needs to be put away for a rainy day. I’m particularly bad for getting gifts which are a one off e.g. expensive skin care or hair products and not wanting to use them for ‘every day’. But all that happens is I don’t use them up or I forget about them or they go gloopy so I never got the nice part of it or I didn’t feel the full benefit.

I’m not saying this applies to living a frivolous lifestyle and spending every penny you have and then some, I’m meaning there are some things in life that are meant to be enjoyed in the moment. That while looking forward to something can be exciting and can give you a focus, you still need to enjoy the moment. Not the thought of what the moment could be, the actual moment.

But you can apply the same to your feeling of worth and happiness. How often do we think or say ‘I’ll be happy when…?’ or ‘I’ll feel better when…?’ When what happens? When you have a career and earn a lot of money? When you have a baby? When you have a new car? When you feel less stressed? When you’ve finished studying? But what about all the cool things that happen on the way to those goals? What about an exciting new career opportunity which you didn’t take because you said you’d be happy when you got X promotion instead? Or what if it takes years to get pregnant and you miss out on 6 years of other adventures while you were worrying and obsessing? A car is a cool thing, but it’s just an object. It doesn’t make you happy. How will you feel less stressed if you don’t change anything? What’s miraculously going to change once you finish your studies? You’ll have a bit of paper and feel a sense of accomplishment, but what about all the really interesting things you could have read about on the way? And then, before you know it, you could be sitting there in old age saying ‘when was I actually happy?’. And the answer isn’t ‘when I was Facebook stalking people having ‘better lives than me’ and looking on instagram at the car/house/pet I really wanted to buy’.

So yes. Having goals and aspirations and ‘special’ things is what makes life exciting. But *experiencing* those things and appreciating them for what they are is really what makes life exciting, not the actual thing itself.

‘Your Illness Doesn’t Define You’

Yeah, except mine kind of does. I think this phrase gets said a lot mostly by non-disabled/ill people about disabled/ill people- ‘your illness doesn’t have to define you’. Or it’s said by disabled people who are trying to be uplifting or ‘preach’ about being positive with chronic illness. I find it annoying when people say it to me. Firstly, I never said my illness defines me, someone else is telling me. Secondly, someone else is telling me how I should think and feel about MY illness. That’s just weird and wrong. Thirdly, what defines us as people anyway? Our actions? Our identity? Our personality?

My illness dictates most of my life. It decided I wasn’t fit to work. It limits my activities because I can’t walk far. It stopped me driving. It decides when and what I eat, when and how long I sleep for. It changes my mood and personality in a way that no amount of CBT or mindfulness will help. It made me put on so much weight I don’t look the same anymore. It means I can’t make my own meals, do the jobs around the house, make decisions for myself easily… So what part of my illness doesn’t define me? *It* chooses how I live my life, not me.

Part of the problem is that there are many illnesses which are common place which don’t impact on daily living. It’s not common place to have a debilitating illness, which is why most people struggle to relate to someone who does have one. Something like asthma or IBS or migraines might cause flares every so often, lots of people have them, but they don’t define people. For example, when I was asthmatic, and just asthmatic (before all my endocrine things), I would have said my illness didn’t define me. Even when it was uncontrolled and I was struggling to do a lot of things, I wouldn’t have said it defined me. I still had an element of choice over my hobbies and activities. I could manage it with inhalers. I was still ‘me’ personality wise. Or if you have a temporary illness, or one which relapses and comes back, you might be able to say your illness doesn’t define you. Because at some point, ‘you’ will come back again. But when you’re permanently altered because of your illness, it kind of does define you. It has to, because it completely changes you. And rather being told perhaps slightly patronisingly not to let something ‘define’ you, other people need to be ok with it too.

It might be considered to be an uplifting phrase. The person is trying to tell the person with the illness that there’s more to them than their illness. But when you’ve been diagnosed with something which has horrible symptoms, which you feel like is taking over your life and you’re already incredibly paranoid and stressed about trying to manage everything, hearing the phrase just makes everything so much worse. Am I talking too much about it? Should I not ask for help if I need it? Do they hate me because I’m sick? Are they trying to tell me that I should just get a grip and get on with it? None of these might be true, it could be said with good intentions, but in the same way mums don’t like hearing other mums say things like ‘my son has really good table manners’ when their own child is mashing banana into their hair, chronically ill people get a complex too when people comment on their (drastically altered because of their illness) personality. The child having good table manners might be a fact, and the mum might be saying it perfectly innocently, but it’s sometimes hard to tell what’s genuine and what’s a dig if you’re already feeling overwhelmed.

I reckon part of it is that the phrase is a phrase that people have heard other people say and it just ‘comes out’. You also see incredible things people manage to achieve despite chronic illness so other people naively think that anything is possible even with chronic illness. But some people can’t do those things regardless of how much drive and determination they have. For example, I would love to do the three peaks challenge to raise awareness for adrenal diseases. Some people from the Pituitary Foundation did that last year. Great for them- their illness is in a place where they can physically achieve those things. They might feel crap afterwards and need days to recover, but they could achieve it. I’d be irresponsible if I tried it- I’d probably need a helicopter and a trip to the nearest ressus department. So I’m not letting my illness define me by not doing that fundraising along with other people who share my illness, I’m choosing not to be an idiot and save the NHS and the air ambulance a lot of money.

That said, my illness isn’t the only part to me. It controls a lot, but it’s not the only thing I talk about, and I think that’s important and the only time this phrase makes sense. I’m obviously going to talk about it because it’s a massive part of my life. But it’s not the first thing I mention when I meet new people. I tend to only talk about it to strangers if it comes up organically in conversation or if I’m asked specifically about it. I talk to my friends about it, but I also ask them stuff about their lives too. I would agree that there are some people who live their illness and that’s it- it’s all they talk about. Some people need that because it’s a way of processing the challenges they face, others perhaps enjoy the attention they receive from having an illness a bit too much and expect other people to cater to their every whim. Whichever way, perhaps those people need to realise that while your illness can control your life, if you can still talk, read, watch TV or do any type of hobby, there’s something that your illness doesn’t have to butt its annoying head into. But they still won’t like to be told (or likely won’t listen to someone say) ‘your illness doesn’t define you’ 😉


‘It’s *just* your hormones’

This phrase annoys me two ways and they’re both the polar opposites of each other! It’s a phrase that gets batted around quite a lot as a way to ‘excuse’ women’s behaviour, in particular. But whichever way it’s used, it’s irritating. So it’s now one of the phrases I’d quite like to see eradicated.

Hormones control everything. I don’t think most people realise that all of your systems rely on hormones to make them work. Hormones tell the different bits of body to do things, they’re like messengers. Otherwise your body is just a bunch of post boxes without any mail getting delivered anywhere else. They zip around all day every day, even when you’re asleep. In fact, a lot happens when you’re asleep and you don’t even know it. It’s actually pretty miraculous that we wake up every day because so much has to work in the background while we were counting sheep.

There are some hormones you need to survive. Some you’d die if you didn’t have them- cortisol is one, insulin is another. Not your life would be more miserable or you’d have horrible symptoms. You’d actually die without them pretty fast. Which makes hormones pretty damn important since they’re all linked together. And if one goes a bit haywire, chances are this has a knock on effect on the others. But it’s a bit like spreading gossip or Chinese whispers- the messages get changed slightly as it goes through the system, or things change so that by the time the second message has got through, it’s too late to be effective. Hormones are tricky things.

Which is why I get really mad when someone says ‘it’s just your hormones’. It’s said in two ways:

1. To try to dismiss what you’re feeling.

In the same way saying ‘calm down’ never makes the receiver feel calmer, telling someone ‘it’s just their hormones’ when they’re distressed, or words to that effect is like lighting a match. Particularly if you shout it at them. In fact, if I am having a meltdown, shouting at me is about the worst thing you can do, because it makes the hormone imbalance worse. Someone who has a hormone imbalance isn’t necessarily physically able to produce the hormones that help other people rationalise, keep calm or let go of something. And when you’re feeling really unbalanced hormone-wise, you’re not just having mood swings, or being irritable or tearful, you’re also likely feeling paranoid, guilty, anxious and possibly suicidal. About what? Probably about something minute. But can you get your body to realise that? Not easily- it’s not a mental problem, it’s a chemical problem. So hearing things like ‘get a grip’, ‘just let it go’, ‘calm down’, or it’s ‘just your hormones’ makes you feel even more paranoid, tearful and stressed which adds to the problem. Even if it is something stupid to everyone else, a person with an imbalance can’t get a grip, and telling them so just makes it worse because you know you’re being ‘silly’ and you can’t do a thing about it.

I tend to have meltdowns at home and not in front of other people unless I get caught out. But because it’s not just people like me who will have this problem, pregnant women also have similar imbalances (although they get a bit more of a free pass), here’s what helps me when I’m in a cycle, so maybe it might help some other people.

I will be going round in circles- sorry about that. I’m usually so disorientated by whatever it is that’s stressing me out I won’t remember the start of the cycle so will keep going over it. And it will sound like blithering but it’s important that someone hears my concerns and takes them seriously. It might be stupid. But to me, it’s really not at that point and if you want me to stop having a meltdown, trying to snap me out of it actually takes longer! So listen to me. Write my main worries down or summarise them to me at the end so I can see I’ve been heard and you can repeat to me that we’ve been over it.

Do something that shows me I’m not pissing you off. I will be over sensitive to everything and read things into things which aren’t actually there or are just coincidence. But it’s harder for me to think that if you’ve given me a hug or made me a cup of tea or come and sat next to me.

The worst thing about having had a meltdown is not knowing what to do with myself afterwards. Hormones are working overdrive and it sets the whole thing off again if there’s nothing to bring me back down to normal. So I need a plan. It’s doesn’t have to involve you, but I need the next hour planned out so that I can follow it and feel in control. But I won’t be able to come up with something myself because I won’t be able to see the wood for the trees. So it might be ‘go get your crochet, what animal are you working on?’ Or ‘watch an episode of X and then have a bath. Do you need a magazine?’.

That being said, this brings me to the second way people use the phrase:

2. To excuse negative behaviour

Like I said, I try to reserve my meltdowns to home and not eat random people alive just because my hormones have gone a bit crazy. Although a poor British Gas man got my wrath one day! I try to walk away from as many situations as I can or just stop talking if I think I might be rude. Sometimes I get it wrong, but I’ll always apologise afterwards, which is more than can be said for some people who don’t have hormone problems!

So I find it annoying when some people use it as an excuse regularly. Whichever way you look at it, no one deserves to be treated like crap all the time, hormone problem or no hormone problem. Something like PMT or being stressed at work is not a reason, in my mind, to be rude to everyone you know for a week every month. PMT is like a fluffy rainbow unicorn and my illness a fire breathing dragon in comparison- if I can try hard to minimise my outbursts as much as possible (or at least apologise), then other people should try too!

Note how I said try. Everyone’s human and has a bad day. I’m not talking about people who have a bit of an off moment or who are going through a hard time, I’m talking about people who use ‘it’s my hormones’ constantly as an excuse for being rude.

So you can see, it’s a bit of a tricky phrase because using it as an excuse is annoying but said flippantly is also annoying. Maybe it’s the ‘just’ that it always comes with. I don’t know. But I do know that I will probably walk away quite sharpish if it’s said to me so I don’t end up punching the person who says it to me!

Stuff from 2017

I wanted to try to make a nice ’17 things from 2017 post’ like other bloggers are doing, but I can only think of 14 highlights. Either that or I’ve forgotten some of the cool things I did! Either way, this post is a work in progress, so if you think I’ve missed something/we did something together that fits in, let me know!

2017 was a bit of a ‘meh’ year. It happened. I survived. I had some lovely times, I also had some pretty crappy ones. Here are some of the blog-worthy things my husband and I came up with while on the M25 this morning.

(In a random order, depending on when I thought of them)

  1. I started my Out With Animals blog. It’s a charity-based blog and you can read about why I started it in a lot of detail here. I looked a bit nuts to start off with, persuading my friends to take animals out and take photos of them to post to sick or vulnerable children, but I’m pretty proud of how far it’s come in less than a year.

Out with animals logo.jpg

2) I learnt how to crochet. Pretty important it turned out for both my animals blog and my other venture this year! Here’s some of where I started:


and here’s what I can do now!

unicorn 3

3) I decided that if I was sitting around crocheting all day, I may as well try to make some money from it. So I opened an Etsy shop and Facebook page. My small business doesn’t earn me loads of money and I’m never going to be a millionaire, but it funds my crochet hobby (obsession) and gives me a sense of purpose- I’m really liking the challenge. Search Ok Then What’s Next (or @okthenwhatsnext) on social media if you want to follow my pages 🙂


4) I became an Auntie again! Now I have a niece and nephew and I really like spending time with them.


5) I wrote a book. Which I self published, and then people actually bought it! Again, not lots of people, but it’s still pretty cool! Lots of people asked if my Out With Animals stories were available as a book, so I thought ‘why not?’. Plus it’s a great way for keeping the blog going- I can’t work so was getting a bit worried about how I was going to keep being able to afford to make and post animals, but selling the books means it kind of funds itself if people keep buying them. Send me a message via my social media @outwithanimals or through this blog if you want to order a copy 🙂


6) Some posts I wrote about adrenal insufficiency on this blog got picked up, retweeted, shared and commented on by big charities either in the UK or the USA. I’ve also had messages from other patients saying how useful they’ve found it. I started it for that reason- when I got diagnosed I couldn’t find anything which told me how to actually live with the illness. So I’m glad it can help other people.

7) I volunteered at an endocrine conference. So I got to help with doctor/nurse education about adrenal insufficiency and addison’s disease. Plus I learnt a lot of new things too.


8) I published some of my crochet patterns online. And people have downloaded them! I guess this means I can call myself a crochet designer now? I have a ravelry and etsy shop where you can download these from (also called Ok then What’s Next).

9) My husband and I went to 2 concerts at the Royal Albert Hall. Both were really good! We saw Harry Potter and the Philosopher’s Stone performed by a live orchestra and also the Piano Guys.



10) I turned 30. And we had a ‘surprise’ party for it with lots of my friends. I hadn’t seen a lot of them for a long time so it made it extra special. Here’s a photo of my really tasty cake a friend made me:


11) I had fun trying to complete by 30 things lists. I didn’t quite achieve all of them, but I’m still working on them! I had a 30 things I wanted to try before I turned 30 list, and 30 foods I wanted to eat before 30 list. It was great fun to do, so I’d recommend doing it even if you haven’t got a significant birthday coming up!

12) We went on holiday to Devon with my parents. And 2 dinosaur friends! We had a nice week away in a part of the world I hadn’t been to before. A holiday involving scones, ice cream and the sea was great!


13) I sent my 100th animal out on an adventure for my Out With Animals Blog. It was Timothy the Tuatara (nope, I didn’t know what one was either- it’s somewhere between a gecko and am iguana!). Considering I couldn’t crochet at the start of the year, it’s very impressive, I feel anyway, to have made 100 animals in less than a year!


14) I meditated every day for the entire year. Bringing my streak to 2 years of meditating every day.


There’s a whistle-stop tour of my year! And if anyone can think of 3 other blog-worthy things I might have done, I’d quite like the symmetry of getting 17 things for 2017 😉


Being Kind to Myself

I’m a broken record I know, but I bloody hate tapering from stress dose to baseline. In one of my endocrine crying meltdowns which come from tapering last week I sobbed at my husband that I feel like all I do is taper for about 90% of my life because no sooner have I got to baseline, I get sick and have to stress dose again.

Tapering for me is really, really hard. My endo tells me it’s because I’m super sensitive to any changes to my dose, more so than the average person with adrenal insufficiency. So 2.5mg doesn’t impact on most people that much, but makes me feel like a heroin addict going through early withdrawal. Or like you’ve got flu. But for 90% of my life on top of the already terrible symptoms I have from having adrenal insufficiency in the first place. It’s not just physical symptoms, the mental ones which come with it are just as bad.

Tapering involves lowering your cortisol level through reducing your steroid dose. So you’re essentially gradually exposing yourself to low cortisol symptoms to try and get your body used to the baseline level you should be on. Low cortisol can make you incredibly anxious, depressed, guilty feeling, obsessive, suicidal, paranoid… It alters your mood.

One thing I get really, really stressed about when tapering is my diet. I follow a low carb diet to try to help my symptoms. But my body responds to low cortisol through tapering by making me eat every hour. I’m not hungry necessarily, I *need* to eat, otherwise I faint or end up in hospital. It’s a long story, but basically if I don’t eat what my body needs, even if it’s a temporary fix, I end up in hospital or back on a double dose- it’s lacking energy from missing cortisol, so it panics and makes me need to eat. But obviously eating so much makes me put on weight which doesn’t help my endocrine disorders. Which wouldn’t be a problem if it was only a few days a month, but because I spend so much time tapering, it’s actually a big problem.

This is further compounded by the fact that I had a very useless endo who told me my adrenal insufficiency was all in my head and I should stop eating because that was just me making excuses. Now if you know me, I do not make excuses. I’m about as stubborn as they come and lack of willpower or resilience is not me.

So I usually spend my time tapering arguing with myself as to whether I should be eating, what I should be eating, panicking that I’ll put on weight, which then uses up more cortisol, which causes more physical and mental symptoms, which makes me feel worse, which means I need to eat more. However, this time, for some reason, I’ve been feeling less guilty about it. If I’ve needed to eat, I’ve eaten, even if it means eating carbs. Because I usually feel really nauseous and have a really terrible stomach ache when tapering, sometimes I can only really stomach coke and ready salted crisps. Which isn’t healthy, but this time I seemed to have figured that coke and crisps is better than coma or death.

Maybe it’s my new endo, or finally the counselling I’ve had since that endo tried to kill me is kicking in, but I’m realising that I’m 3 and a half years into diagnosis and my endo team still can’t figure me out. If they can’t with all their fancy professor titles and combined PHDs then how can they blame me if I eat a packet of crisps to try to avoid a hospital admission? Yeah it’s not a long term solution and it doesn’t help with weight gain, but equally, they haven’t come up with anything better yet. It’s not like I’m an unhealthy person- I’ve done everything they tell me to, even when it makes me feel truly terrible. Like reducing my steroid dose- I feel magic in comparison on even just a slight increase of what I’m on now, which I could so easily do if I wanted to, but I don’t because they don’t want me to.

This time I’ve been a lot more kind to myself and it’s made it all a bit more bearable. Hopefully I can keep this up for future times!

Emotions & Sealions

Everyone knows not to aggravate the pregnant lady for fear of hormonal wrath. And there’s enough memes going round about how women can’t believe they just cried for no reason in the supermarket and then came on their period and it all makes perfect sense. Emotions are psychological but they’re also managed by hormones and vice versa- an emotional response to something triggers a bunch of hormones and hormones can also alter your emotions.

Unsurprisingly, this makes it difficult as a person with adrenal insufficiency because we’re missing one of the big ones- the stress hormone, cortisol. Cortisol pretty much is the boss (or at least the boss which signals to other hormones and glands) of all hormones. And the adrenal gland actually makes about 90 hormones, but we only get to replace one. So bear all this in mind when reading this metaphor!

Hormones have a psychological and physical role. You hear of people seeing a red mist and not being able to control physically beating someone up under extreme stress. If you don’t make cortisol, your body is under constant extreme stress. But I guess it’s a hard one to explain unless you experience it.

Imagine this. You’re at one of those aquariums where you can see the sealions in their tank because there’s a big glass window and the top of the tank is above you. All of the sealions are sat on a rock, barking, and then they suddenly decide to plop into the pool, one by one. As they do that, the water level goes up and you start to get splashed a bit. With a jolt, you realise you know exactly what’s going to happen, you just can’t stop it from happening because it’s out of your control; the water’s going to come over the edge. You get that electrocuted ‘oh crap’ feeling you have when you think you’ve put your phone in the washing machine.

So your heart rate goes up, your stomach has plummeted and you feel like the air has been taken outof you. The last lion bellyflops in, just for good measure, and you’re drenched. You’ve literally been hit by a wall of water, a bit like the ice bucket challenge, and it makes your skin sting and gives you muscle cramps. Plus the little bastards like their water extra cold, so your temperature also changes really fast. Which makes you feel sick and shake a bit, like a shiver on the inside. Plus the water was heavy so you’ve now got a splitting headache and it got in your eyes so you have to keep blinking to try to focus them.

You’re getting over the initial response to the water and you can hear the bloody lions cackling and barking away. And suddenly you feel mad. Like really mad. But there’s no point in shouting at a sealion, you’d look like a right idiot having an emotional outburst so you try to keep your emotions in check. Except this makes your temperature go up because your blood feels like it’s boiling, and then you feel sick and dizzy for a whole different reason. And you suddenly feel like crying because there are people watching and it’s a horrible feeling with your mind racing trying to work out the best way to handle all the physical feelings going on as well as dealing with your emotions

So the best thing to do is to try to remove yourself from the spotlight and walk away. Except they’re still barking and it’s driving you mad and you’re struggling to not turn around and punch one of them in the face. Which is just a bad idea in general, you know that, but you can’t help it. Walk away. But when you start to walk away, you’re wearing jeans, which are now a million sizes too small and won’t move properly so you’ve got another thing to think about- walking away is not as easy when the bloody sealions are still laughing at you and it’s physically hard work. You kind of want to crumple into a heap. But, again, what a stupid reaction. It’s only water! And, your frustration is compounded further knowing you haven’t got any choice but to wait until your jeans dry because you have no other clothes. And that’ll take ages, no matter how many times somebody asks you if they’re dry yet, they’re not just going to miraculously go back to their original state within seconds. And they’ll be out of sorts for the rest of the day anyway, even once they have gotten rid of the water.

You do manage to walk away though and assess the damage. Some things you can stick under the hand dryer and get a bit of an improvement, but other things, like your jeans, are going to take a bit of time. But you don’t really feel like having to explain the humiliating story over and over and bring it all up so you feel it’s best to hide for the rest of the day.

Having an emotional response to something when you have adrenal insufficiency is pretty much exactly how I just described, even something which might seem quite minor. Every physical symptom from having cold water dumped on you happens (minus the cold water), and it happens that quickly and without much ability to control it. Sometimes you can see it coming and apply mindfulness or another technique to try to counteract the physical response which comes with the emotions, but you can’t always do that. Especially if someone picks a fight with you. The worst bit is, you actually can’t let it go or back down once you get to a certain point, like the jeans which are wet- it takes time for things to improve. Once your emotions have been dowsed in water, they don’t just suddenly dry up and you can carry on as normal.

Serious confrontation or arguments, or even constant minor conflict, can be potentially life threatening if not appropriately managed with extra cortisol (steroid). A ‘normal’ person can move on relatively quickly from seemingly minor things, whereas we can’t necessarily. It’s so difficult to manage, and while we appreciate that random hormonal outbursts are not ideal or pleasant to deal with from us, if you’d give the pregnant lady or hormonal PMS female a bit of leeway and compassion, then we almost definitely deserve the same, as there’s a lot going on underneath the surface 🙂

Illness Burnout

Everyone knows you can get burnout from working too hard, being exhausted from looking after the kids, exercising too hard… but did you know you can get burnout from having a chronic illness?

It’s not so much the ones you have to manage by taking meds a few times a day, that’s not really that big a deal and takes maybe 2-3 minutes per day, with a bit more input if you get flu or something. It’s more the illnesses which need constant maintenance and monitoring and which impact massively on your life.

It’s bloody knackering. It’s like having a pet or a child but never getting the good bits. And unlike a pet or a child, you can’t have ‘me time’ or leave them with the grandparents for the weekend. There’s always a big part of you which wants to say ‘f*** it, I’m not dealing with this today’, but you don’t get that choice if the end outcome is death.

Here are some of the things that make me feel burnt out with my adrenal insufficiency sometimes:

1. By far the one that annoys me the most day to day is following a medical low carb diet. It’s supposed to make me feel better, help me lose weight and lower my cholesterol. But it doesn’t. So what’s the point in doing it. Why can’t I eat what I want?! The diet itself isn’t the hard bit, it’s the guilt that comes with it, that I must be ‘doing it wrong’ since it’s not working.

2. Keeping records and diaries. If there’s a medical app for it, I probably have it. The only way I can prove to my doctors that I am actually doing what they tell me or that I’m not fabricating my weird quirks is by documenting everything. So everything I eat and drink is recorded along with physio, blood pressure, blood sugar, temperature, how often I need to go to the toilet, sleep, changes to my meds… everything I do is recorded because no one knows what’s relevant and what’s not until they see it. It’s time consuming and annoying and depressing all at the same time. And it makes you obsessive.

3. Doing a lot of maths. Grams per carb per serving, timing blood sugar readings, working out my steroid doses daily, making sure I have enough meds so I don’t run out, organising said meds.

4. Constant monitoring or reflecting to make sure the maths stays right. You can work out your steroid taper plan at the start of the week but have something happen which scuppers it and have to do it alllll again. And stabbing your finger multiple times a day to check your sugar level is never fun.

5. Going to appointments. I see my chiropractor staff more than I see my mum. Hours waiting in hospital waiting rooms, travelling to appointments, mostly to be told ‘nope we still don’t get it, do this test then come back’.

6. Having to chase people. The NHS computer officially hates me. Something to do with when I changed my name after getting married (3 years ago) means that it tells people I’ve been referred for an appointment but it never actually completes the referral. But everyone thinks it has. And then it refuses to let itself be overridden! Aside from that, I spend a lot of time talking to people and being the point of liaison between departments.

7. Having to argue with people. This is a particularly horrible one. I spend a lot of time arguing with people to get my correct treatment. I’m not wanting anything extra to the protocol, the problem is some people are unwilling to acknowledge they don’t know the protocol so refuse outright. There have been a few times where I’ve thought ‘why the hell am I arguing for a prescription which keeps me alive when no one here seems to care if I live or die? Maybe I should just give in’. That’s a particularly dark place to be in and takes a lot of coming back from.

8. Monotony. It’s so boring living with the same routine. But it’s hard being spontaneous when you have naps, meals and tablet schedules.

9. Restrictions. I’m not allowed to drive, I can’t walk far at all, I can’t really go out by myself because of those reasons and I can’t stay by myself for long periods of time. As well as the physical things I can’t do but I can’t be bothered writing. I’m proud of myself when I make myself a cup of tea!

10. Fear of missing out. Everyone has this to an extent, but when you physically can’t do things or have to live so rigidly you spend a lot of time thinking about things which might have been were you not sick.

11. Always having to be prepared. Might seem like fun when you’re in the scouts, but being prepared for any medical emergency is a giant pain. It’s not wallet, phone, keys when I leave the house, it’s emergency injection, phone, pill bag and testing kit. And many snacks.

12. Having to field unwanted advice. People are trying to help. It’s with good intentions. But it’s never nice feeling like someone thinks you’re not ‘trying hard enough’ if they catch you on a burnout day.

13. Having to constantly think about it. I don’t actually want to think about it all the time, but there’s a lot of ‘if I do that will X happen’ or ‘is it nearly tablet time’ thoughts. Pretty much every few minutes because that’s how often my symptoms all shift around.

I haven’t actually come up with a solution for feeling burnt out about illness, except you have no choice and have to get on with it and hope that things will get a bit easier at some point. Self care is important, but sometimes you’re too worn out even for that! People bring new parents food and useful presents- maybe there’s a chronic illness version of those?! 😉

Mental Health & Chronic Illness

I broke up with my psychiatrist last week. Or rather, we decided her sessions weren’t benefiting either of us so we stopped them. However, I don’t feel like I got the help I need or anything remotely useful as to how to cope or manage my mental health in relation to having a chronic illness. I’ve got a long-term, debilitating, life-threatening, life-limiting condition, which is tricky to manage and has meant that I’ve lost an awful lot of my life, but I haven’t had an iota of support in coming to terms with it or learning how to cope with it from the NHS in terms of my mental health. But I’m definitely not the only one who has a chronic illness where mental health directly impacts on physical health (and vice versa) so why is there such a gaping hole in support in this area?

In my case, I was sent to the psychiatrist for 2 reasons:

1. I’m depressed because of what’s going on health wise (situational), and because I take steroids. Regardless of why I’m depressed, I’m still depressed and need help, especially because depression causes low cortisol and low cortisol causes depression, and you get stuck in a loop.

2. My hormones and chemicals don’t function properly. There are 2 bits to the human stress response: the conscious one where you can control how involved you get emotionally with something (like in point 1), and the unconscious bit which you can’t help because your body responds automatically to it. Neither works for me, which makes me ill when it gets triggered. My endo wanted the psychiatrist to assess and treat both responses, but prescribe medication to help with the unconscious part so that it affects my physical health less.

Except I didn’t get support for either. I do things to help myself every day, but only because I did some research and asked friends what helped them. I pay for private counselling because the NHS won’t provide me with a trained mental health therapist (the ones I’ve seen in the past are untrained and follow a tick box questionnaire) and they definitely won’t allocate one who understands endocrine disorders, whereas the one I found does.

The psychiatrist said to expect good days and bad days with my mental health (agreed) and that until my physical health improves, my depression won’t improve. But my physical health won’t necessarily improve, to which she said I just had to get on with it, basically. In other words, I’m not really her problem because my physical health is what’s driving my symptoms, despite the fact that those mental symptoms are negatively impacting on my physical health. How do I fix that?

She said I should be doing CBT, which I am. However, CBT only helps if your thoughts or interpretations of something are creating problems because you’re mistaking emotions for facts, or catastrophisising or trying to second guess people, for example. Except, as I pointed out, I’m not having an irrational emotional response which I’m mistaking for fact if I get upset because doctors tell me to my face that they think I’m lying (and then get proved wrong and apologise, but the damage is already done). Or I’m not catastrophisising if when I go to hospital I have to argue with people because their lack of action due to inexperience of AI has the potential to kill me and almost has done a couple of times. And I’m not second guessing doctors if everything I worry about or predict might happen actually does happen. Or the fact that I have to contemplate death and know that I wouldn’t survive things other people my age would on a regular basis. Yeah, sometimes I do blow things out of proportion and CBT does help, but what about the stuff directly linked to my illness like I’ve just mentioned? What do I do about the pretty regular, traumatic or negative encounters I have which make me depressed? And I can’t control my involuntary response to those things either, so I’m fighting on two fronts.

But I’m clearly not the only person who will have these experiences or problems. And, even if I didn’t have a rare disorder and had something more ‘common’ but still debilitating, mental health support doesn’t seem to exist to help you come to terms with your illness. In balance, I actually deal with my illness and its restrictions quite well- I’m not a bitter, angry person because of it, but only because I’ve worked hard on my mental health myself. Not everyone will be in a position to be able to do that and we shouldn’t have to be really.

Someone should be trying to help us because it’s bad enough being sick never mind feeling like you’re isolated and exhausted from it to deal with the mental side. Irritatingly, as soon as I said my Grandma had died, she suddenly sprung to life and offered me bereavement counselling, which I don’t feel I need because those emotions were far easier to process.

I think there’s a massive problem here which needs addressing. But then mental health treatment in general on the NHS is patchy and inconsistent I’ve heard from other people. I’m definitely not going to get any help by not seeing my psychiatrist again, but actually, my mental health improved slightly after I made that decision because I could stop being anxious about the appointments and the fact that she clearly doesn’t understand AI at all and kept coming out with unhelpful comments. For now I guess I’ll keep plodding along then!

Communicating With Other People

I know this is true of other people with mental health conditions but something I’m having arguments in my head a lot at the moment is how I communicate with other people. There’s two main ways I interact with people: face to face and via technology.

Face to face 

I like meeting up with people but social situations make me anxious. Physically, it’s a lot more tricky for me to meet up with people because of the limitations imposed by my illness. But I sometimes find it quite stressful because I don’t remember half of what I or other people say. Which shouldn’t be a problem, except for the fact that I usually spend a lot of time afterwards over-analysing things that have been said or the way I perceive someone’s body language and somehow manage to make the situation appear in such a way in my mind that I’ve done or said something ‘wrong’ or to upset people. Even when I haven’t. Rationally, I know this. But because I can’t remember much of the interaction I don’t feel like it.

*sciency bit* This is something which lots of people with anxiety experience: over generalisation, negative filtering, emotional reasoning, blame… I have an app which talks me through it all. However, I don’t make the right hormones which help counteract the feeling which means that sometimes no matter how much CBT I do, the feeling doesn’t go away- the chemicals don’t and can’t kick in. I don’t feel any calmer for it.

Via technology

I love social media because I can feel connected even when I can’t get out of bed. Except social media is fake and can mess with your head if you’re not in the right mindset. People only put up what they want you to see, but it can be difficult to remind yourself of that on particularly bad days. Instead it’s easy to fall into the trap of thinking that everyone has amazing lives and I don’t. Some days I log my phone off completely and don’t go on social media at all.

Another great thing is text message or messenger. Except it’s not that simple. I’m not unreasonable, I know that people don’t reply to messages straight away because people have things to do, and I don’t expect people to be at my beck and call. But if I can quite clearly see someone has read the message, or are online and not reading/replying, or just not replying full stop, I find it hard to deal with on bad days. I over-analyse and assume it’s something I’ve done wrong, a bit like after face to face. So at times when I actually need interaction when I’m feeling low, I find it easier not to text or communicate with anyone because then I don’t have to worry about people not replying or answering. Some days I don’t answer my phone when it rings because I’m too stressed out by the thought of it. The advantage of text is it’s all written down so I know exactly what I’ve said. The disadvantage is you can’t see people’s facial reactions. Rationally, I know people don’t reply for a bunch of reasons, one being they forgot or had to do something else. But I rarely manage to convince myself of this on bad days.

Now, if you’re a mentally healthy individual, you’re probably reading this and thinking ‘what an idiot’. I admit, it sounds stupid. But that’s the hard thing with mental health, you feel stupid so you don’t talk about it, and by making it a taboo subject, you feel more stupid. My Dad said once ‘you’re making the mistake in thinking that everyone thinks about things afterwards in as much detail as you. Chances are, they can’t remember what they said either’. He’s right, and he also probably doesn’t remember saying it! It matters more to me because I can’t recall what was said even if I wanted to because I feel so foggy, so I feel at a disadvantage and like I’ve lost control. It’s also foolish to take responsibility for everything that happens in a conversation- whether it’s a good or a bad one, it still takes more than one person to share a conversation so they’re just as much responsible for how it pans out. 

I try to make a point of replying to every message I get even if it’s just with a ‘lol’ or an ‘ok’, unless I’ve got a really good reason not to, because I know how anxious it makes me feel if I’m having a bad day and it’s the other way round. Sometimes I genuinely forget, like if my phone rings in the middle of me typing or I fall asleep (and usually drop my phone on my head), so I’m sorry if that happens. I’m well aware that one of the ways to help myself is to break the cycle and challenge my thinking, but it can be pretty hard work and you have to chip slowly away at it to be successful long term rather than trying to bulldozer it in one go. If you do have a friend who’s depressed, chances are it’s when they go quiet that they need a chatty text message, rather than when they’re actively posting on social media or sending messages.