‘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!

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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.

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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:

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and here’s what I can do now!

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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 🙂

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

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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 🙂

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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.

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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.

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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:

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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!

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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!

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

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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. 

Why Chronic Illness is a Bit Like Being in Prison

Bear with me with this one… I haven’t been sleeping well at all recently which means lots of midnight Netflix and crocheting sessions for me. My documentary of choice at the moment is a series about inmates in different American prisons/jails (there’s a difference, I’ve learnt!) and their experiences of being incarcerated. Not very light hearted, but I actually find ‘people watching’ fascinating. Plus I spent most of my career working with pupils who were ‘at risk of offending/reoffending’, so it’s doubly interesting for me.

But some of the stuff inmates were saying in interviews didn’t just resonate with me in terms of thinking about my ex-pupils. Now, clearly I do not have lots of gang tattoos, or a gang for that matter, unless you count my crocheted animal menagerie, but I did find myself empathising with them because of the situation I find myself in- being chronically ill. Here’s how having a chronic illness is a little bit like being in prison…:

You have a long wait and a bunch of ‘hearings’.

Prisoners have to jump through the hoops of the justice system, and a lot of that time is spent waiting for a 10 minute hearing, to then spend more time waiting. Which is a lot like being on the waiting list of hospital tests and doctors’ appointments. I’m talking about when you’re home all day every day feeling awful from chronic illness, not managing to maintain most of your lifestyle but having an upset stomach or migraines sometimes. Your life is on hold until the next ‘bit’.

Then someone tells you your fate and you get sentenced.

After all this too-in and fro-ing, someone hopefully has the balls to turn around and tell you how long you’re going to be dealing with the illness for i.e. your sentence. It could be a few months, a few years or life. The one advantage of being a prisoner is that they usually can’t wait to tell you the verdict once they have one, whereas with chronic illness there’s a lot of beating around the bush and reading between the lines involved- doctors don’t like committing to things unless they’re 100% sure, which doesn’t happen often.

You might get ‘not guilty’ and get to walk free.

Yep, you’ve got a long term condition, it might be forever, but take your meds and you’ll be able to get on with your life, except maybe for a couple of periods of illness.

You could get probation.

Which means you’re not out of the woods. You’ve had a scare e,g a heart attack, but make some lifestyle choices, take some meds and reflect on how lucky you’ve been and you can eventually get back to your life before with some changes. Except your offence will be taken into account in any future cases e.g. if you have another heart attack, you will probably end up doing some jail time.

Jail Time

Jail is where you go where you’ve either not been fully charged or you’ve got a really short sentence not worth sending you to prison for (according to my documentary). You’re sick for a little while, you might have to go to hospital a lot and have some nasty treatments, but once you’re done you can say you’ve ‘beaten’ the illness. Sometimes illnesses come back (reoffend) and you have to do a similar thing again.

You might get a long sentence.

Of a few years or even life. Except it’s not ‘without parole’, so you’re secretly hoping that someone somewhere has made a massive mistake and will release you from prison and say you don’t actually have the illness or that it’s made some dramatic improvements. Or that medical science progresses and gives you a new treatment. It’s a long shot, but, just like the prisoners, you have to have something to feel hopeful about to get you out of bed. And, just like them, you make the most with what you’ve got and take each day as it comes.

Or you could get Life Without Parole.

One guy said ‘I’m never getting out of here, so what’s the point in trying? Why bother being good when it won’t make any difference to my sentence?’ I found myself agreeing (I hear you bro’, in my best gangster accent!). Some of us are stuck with our illnesses forever. They won’t get better. It’s bloody miserable thinking that ‘this could be it’. In my case, I doubt medical science will come up with anything while I’m still alive since the current treatment is archaic enough already it would take miracles to come up with something life altering. Plus no one cares because it’s rare. You have to watch the ‘free world from your window’, which is what another inmate was doing. He watched cars on the highway all day.

Death Penalty.

Obviously we don’t have this in the UK. But it was weird- a lot of the death row inmates said they hated being there, they had no quality of life, they spent 23 hours out of 24 in a cell by themselves with next to no possessions or human interaction, but they still wanted to avoid the death penalty and live like that for the rest of their lives. I have some human interaction, but I spend a lot of time by myself during the day, can’t go out myself and don’t have a lot of freedom because my illness limits me so much. It’s hard work every day, but I still want to avoid the ‘death penalty’ too.

You get a lot of visitors to start off with.

The inmates found that a lot of their families came less and less frequently the longer they were in prison for. They didn’t really know why, it just happened. It obviously puts a strain on the family outside of prison too. There are a few core individuals for each inmate who keep coming, but very few had regular visitors once they’d been there 5 years.

People take sides.

Inmates found that people either fell into the ‘we think you’re guilty/innocent’ camps. There was no in between. It kind of is the same with chronic illness, since a lot of people seem to think that chronic illness is something you inflict upon yourself, which it isn’t.

You suddenly start to appreciate little things.

One inmate got moved from max security to a slightly lower level. He’d been in isolation for 10 years and finally was able to have a roommate and access to the commissary. He loved drinking ice water because he hadn’t had that option in max security. I’m kind of the same with some things now. I like being able to make my own cup of tea because it’s one of the few things I can actually do for myself. And I like tea. I feel a sense of achievement from finishing something I crochet in a way I wouldn’t have done before.

You don’t have any choice but to keep getting up every day.

They get up to the same routine. I get up to the same routine. There’s no spontaneity. You feel trapped. You get communications from people out in the real world and wish you were there too. Thankfully, I don’t have a prison warden breathing down my neck. And I don’t have to sleep in a dorm.

Here’s the thing though. What I have learnt from this programme is the fact that you can actually just be in the wrong place at the wrong time. People make bad choices and end up in prison e.g. did you know that if a murder happens at the same time as you’re committing a crime, even if you had nothing to do with it, you end up being charged for that murder too? So one woman was robbing a shop to feed her kid and someone else came and shot the owner. He got away, she didn’t. She got charged for murder. You can equally have an accident which leaves you unable to walk because you decided to do cliff diving. And, let’s face it, everyone is kind of bending the ‘law’ to suit themselves, so it’s just a matter of time before you get caught e.g people smoke, drink alcohol or eat unhealthily but because they haven’t had to worry about the consequences of it yet, they don’t- everyone assumes it’ll happen to someone else.

But illness doesn’t happen to ‘someone else’. It happens to a lot of people, it just depends on the degree and the sentence. It’s great if your illness is short lived, like a year or two even (even if it is scary), but for those of us serving long sentences, it doesn’t get any easier every day just because we’ve been serving time for it longer. However, there are some inmates and some people with chronic illness who are determined to make the best of what they’ve got and find other ways of enjoying the freedoms they do have. Every little counts.

If I suddenly start expressing a need for gold teeth or trading food stuffs for favours with people then someone needs to at least try and bail me out. For now, I’ll keep getting up every day, watching the world via social media or my window and crocheting my gang members.

What a Difference 5mg Makes…

…Or any updose for that matter. Updosing is where you take slightly more Hydrocortisone than your usual baseline dose to cover an extra stress or exertion. So my current baseline is: 15mg at 8.30am, 7.5mg at 12.30 and 5mg at 17.30. If I wanted to updose, I’d take 2.5mg or 5mg extra either at one of those times or in between if something specific happened. 

I’ve been updosing to pretty much a stress (double) dose for the past 3 days because it’s been my birthday. It’s frowned upon to do this, because it’s supposed to be for illness or other stress (ie not fun things), but I wanted to actually vaguely feel like a normal human being and enjoy it. It’s worth noting that even with the increase I’ve still had naps scheduled every day, had a lot of Payback to deal with and didn’t anywhere near do things which other people would count as ‘normal’ birthday activities, but I would have ended up in hospital without updosing. And I had a lot nicer a time because of it. 

Which is why it’s so bloody frustrating. I drag myself through life at the moment. There is not a point in the day where I don’t feel foggy, tired, dizzy, in pain or sick. On a slightly higher dose, I feel like I can keep up with conversations, my sense of humour feels lighter and I laugh more, I don’t feel as anxious about keeping track of where the nearest bench or toilet is, everything feels less like I’m moving through tar… It’s been amazing to feel even vaguely like my old self again. And I know that I can feel like that by increasing the pills I take, but I can’t. People on diets say they feel tempted to break them and how hard it is when they have treats in the house, imagine how tempted I feel to take extra HC and not have to struggle so much! 

But I’m not allowed to do that, and I wouldn’t anyway. It’s bad for my bones and heart and liver and blood sugar etc. It’s not an exact science and too much can cause problems just like too little can. Steroids are wonder drugs but they’re also not good for your body long term. So yes I have to take them to stay alive, but I need to keep the dose as low as possible. Which makes life miserable somewhat.

 It’s like being told to survive on one bowl of porridge a day and that’s it. Yeah you can do it, but you’d be tired, grumpy, have stomach ache, have lots of other side effects from not having a balanced diet and having things missing from it, you’d never feel full, not to mention feeling low from having the same routine and expectations of food every day and you see everyone else eating cooked breakfasts and feel frustrated. It’s so frustrating because, in my irrational moments, I know I can live better with more hydrocortisone. Except in my rational times, I know that it’s not an easy fix to pile on the doses just like that and there’s the bigger picture (i.e. The rest of my life) to think about. If my dose needs to be increased, it needs to supervised, monitored and justified, not just because I feel like it. 

I really enjoyed the few days I was updosing for my birthday, but it does feel a bit like Cinderella being allowed to go to the ball and then getting locked back into her house with chores and tasks to complete. I’m expecting a bit of a crash in the next few days-  a natural one because the birthday fun has come to an end, like most people would experience. But also an adrenal one, partially fuelled by an emotional response to my Cinderella simile but also a physical one because I’ve done a lot the past few days and I have to taper back down my hydrocortisone to my baseline. It’s not pleasant and I really loathe it. Maybe somebody rich will knock on my door with a shoe and offer me lots of money/a kingdom to rule and it’ll all work out in the end! 😉 

‘Weren’t You Scared?’

Since writing my post about needing to use my emergency injection, a few people have messaged me (thanks!) either to keep me entertained or because they’ve been curious about adrenal insufficiency. Something which has come up a lot is the question ‘weren’t you scared?’. I think I’m getting asked this more than usual after a hospital admission because I actually had to use my injection this time.

First of all, feeling like I’m going to pass out and being ill in random places, ambulances, a&e, hospitals etc etc isn’t new. That doesn’t mean I’m cool as a cucumber, but it does mean that while I’m right in the middle of it, I don’t really get properly scared. It’s kind of a ‘here we go again’ eye roll moment. I do cry and go off on a tangent/spiral, but it’s not fear, it’s crazy hormones making me anxious and confused. Don’t get me wrong, Adrenal Crises are scary things. You don’t feel like you’re in control of your body (you’re not), it’s almost like watching a film, but I have low cortisol symptoms all day every day at various points anyway. The indicator it’s a crisis for me is i get all of them at once and a ‘I need hospital’ feeling.

Secondly, it’s actually really bad if I do get scared because it means I’m more likely to die because my body wouldn’t cope with it (not having the stress hormone and all that). So it isn’t in my best interests to be scared!

The main reason I don’t get as scared as people would expect is because I spent a large portion of time walking a fine line between conscious and coma before diagnosis. I just didn’t know it, and neither did the doctors. So my theory is that if I didn’t die then when no one knew what was wrong with me, I’m unlikely to now I know what’s going on *touch wood*.


The other side of it is that I’ve had to become very practical about it. If I sit down and think about it, it’s a bloody scary illness. Lots of things can kill me. If I have a minor car accident, I could be critically ill fast. A stomach bug is potentially life threatening. I rang an ambulance once because I opened the oven door and the temperature and bending down sent me into a hypoadrenal episode (suffice to say I don’t use the oven anymore). But equally anyone could also cross the road and get run over and die. Yes death is a lot more likely in my case, but if I worried about everything that killed me, I’d never get out of bed.

I do get scared sometimes but I have to be conscious unless I’m with my nurse friend(s) in case I need to give very specific instructions about my care- the joys of having a rare illness. So I kind of close my mind off and deal with it later. There have been 2 clear times I’ve been terrified, both times I ended up in resus and I had a lot of people running around after me very quickly. One of those times I’d rung the ambulance by myself so had to deal with it all alone. The problem with going to hospital a lot is you get clued up to routines and jargon. So resus symbolises a ‘crap things are bad’ moment for me and I understand all the things they’re saying and know exactly what bad obs and the various alarms mean.

So why wasn’t I scared when my nurse friend got my injection out? Well I was a bit, because if he felt the need to use it he must have been worried. But I also knew that if I did pass out, I had him, my husband and my friend there so someone would be able to sort me out. I rarely have that luxury!

My main fear about adrenal insufficiency tends to come out in the fact that I don’t like being/can’t be left alone for long periods, especially at night. I’m not safe to make meals and do a lot for myself for one thing, but if I’m going to have a problem, it will likely be at night since that’s when I feel worse. So it reassures me having someone with me who can at least point out that something is wrong and prompt me to take medication or call an ambulance. Because anxiety makes me more ill, just the fact that someone is nearby helps a lot with that- that’s why I joke about having a babysitter. My second fear is not being taken seriously by a medical team. It’s less of a problem now because I’ve got alerts set up on the systems by my doctors/the ambulance service, but there’s nothing more scary than having a life threatening, time sensitive illness and having someone who hasn’t heard of it refusing to treat you (it happened a lot to start with and was pretty damaging!). I got used to having to put across a reasonable, controlled and rational argument to doctors when seeking emergency help, because if I didn’t, they would listen to me even less. It’s kind of stuck.

So yes. If I sit down and think about it, I do get scared because it’s a scary illness and a lot rides on me being with it to explain it or to be able to do my injection. But I plan my life sufficiently that I cover the obvious problems, and the alerts are set up, I wear medical ID, carry instructions and have emergency contacts on my lock screen of my phone for the hidden gems life throws at me that I can’t plan for. I wouldn’t be human if I said I wasn’t a bit scared using my injection, but that specific emergency was the least scary one for me I’ve had so far, largely because I knew my friend was looking after me! 🙂