‘Stressful’ Situations

This is a really hard one for people who don’t have Adrenal Insufficiency to understand and empathise with. And, to be honest, I would have struggled to before diagnosis too. A stressful situation for me is not the same as for other people. No amount of ‘getting a grip’ will help me. I can’t mind over matter it. 

The first thing to appreciate is the fact that stress has both a psychological and physiological response in humans. So in a ‘normal’ person, they might experience psychological symptoms of anxiety, nervousness, low mood, irritability or emotional outbursts if they are under a lot of stress. And these symptoms, if not dealt with over time can manifest physiologically in the form of visual disturbances, migraines, stomach ache, vomiting, cramps, shakes and tremors, dizziness… The list is different for every person. However, because of the way our fight or flight mechanism works, the initial psychological response to stress and the adrenaline release allows people to function better temporarily in order to get past or overcome the stress at hand. It’s what helps you run away from a bear and climb a tree if you need to. So people can achieve a lot while they’re at work but then feel absolutely knackered as soon as they walk through the door. Prolonged living at a high level of stress is what brings on the physical symptoms.

On the other hand, someone with AI doesn’t have that fight or flight response which allows us to power through and crash and burn at a time which suits us. We can’t ignore our physical symptoms because our bodies perceive stress as having been living at the prolonged stress level for years, even if the ‘stressful thing’ only happened a few seconds ago. We feel like we’ve been running from the bear for about 3 days. This is because we already have depeleted levels of the stress hormone, cortisol. When the bear starts staggering out of the bushes, bodies are supposed to release a lot of cortisol very quickly to get you into running mode. Ours doesn’t. It uses up what’s left in the tank and then doesn’t make anymore. That’s when we get the visual disturbances, migraines, stomach ache… etc which everyone else might get further down the line, except we can experience all of those in a matter of minutes. If other stressful things happen, we don’t take more meds to compensate or we don’t remove ourselves from the original stressor, that’s when it becomes life threatening. 

Realistically, I’d be saying ‘hold on Mr Bear, chase me by all means, but let me do my IM injection and stress dose and then I’ve got maybe a little bit of a chance in keeping up with the others running away.’ I’d get eaten basically!

All of this means that ‘stressful’ things to me are not what other people would consider stressful. There are many physical stressors to take into account, but these ones are purely emotional or psychological.

There’s the obvious ones like bereavement or serious shock. You know how people faint when they find out someone dies? But they usually come around? That’s the body draining of all cortisol (among other things) and fainting is the body’s way of righting itself and making more to help the system cope. Unless you stab me with my injection, I wouldn’t ever wake up. 

Another obvious one is confrontation or arguments. That seeing red or pounding in your ears? That’s your fight or flight. I get that but then I also feel like I want to be sick and pass out at the same time. I don’t even mean full on blazing arguments either, I mean basic things like someone being rude to me even if I haven’t done anything wrong. I find it hard to stand up for myself because of the reaction it has in me. I choose my battles.

Emotions in general. Everything feels exaggerated, even happy ones. Pregnant women spend a lot of time blaming their hormones or crying for no reason. It’s similar for me. Except if I cry too much I can make myself seriously ill, which then causes me more problems. This gets further compounded by the fact that low cortisol symptoms usually include depression, anxiety or paranoia, which cause ‘stress’ which causes more of the depression, anxiety and paranoia. Fun, right? 😉 Excitement also causes problems. Sometimes I find talking too animatedly makes me feel ill.

I don’t find practical jokes funny. If they’re designed to scare or get a specific response, my response would be adrenal crisis 9 times out of 10 rather than the hilarity that others would want. 

Information overload. Many of us have issues processing sound and light and noise quickly. So lots of that in one go or having a lot of verbal or written information given to us can trigger the non-existent fight or flight. 

Changes to plans. Because we spend so much of our time trying to manage our emotional and stress responses, we tend to overplan so we know what to expect. So on a bad day, changes to plans or the unexpected does actually count as a stressful event. 

There are probably more but I can’t think of them right now. We can learn to manage our emotions as best we can, but once the stress mechanism is triggered there is only so much we can do to control the response. It’s physiological as well as psychological. Telling me to get a grip will make it worse (hello paranoia). Shouting at me will make me like a red rag to a bull and it’s a slippery slope. It takes us a long time to recover. I’m talking hours and sometimes days depending on how many stressful things happened in a short period of time and how bad they were. 

Part of me finds all of this fascinating because the body is actually an incredible thing. But the other part wishes I hadn’t had to learn about it through experience! 

Stress Dosing for Emotional Stress

When you’re sick or injured and have Adrenal Insufficiency, you have to double your steroid dose to cover the additional stress your body is under. This is because our bodies don’t make any or enough of the stress hormone cortisol. It’s sometimes confusing and hard to get right, but the general rule is if in doubt, stress dose: too little could kill you, too much in the short term won’t. 

Emotional stress is a whole other ball game. It can be more dangerous than physical injury or illness because it sneaks up on you, and then you have to try to work out how much extra coverage you’ll need e.g. A full double dose or a slight bump. Mentally you might be ok with whatever is going on but your body might not be- it reacts to your subconscious thoughts as well as your conscious ones. 

For some things it’s obvious. Bereavement or shock is a no-brainer- double the dose or inject if needed. But life is full of complexities and twists and turns and, like everyone, you can handle some things better than others on one day but be a mess the next, even if it’s the same thing. 

There are also a few things to think about regarding emotional stress which non-AI people take for granted (I did too before diagnosis):

1) The proximity to your last steroid dose. A friend was in a car accident and he waited until 30 minutes after my lunchtime dose to tell me. I was obviously still worried, but I was in a good place to mange my feelings about it. People with AI are best equipped to deal with bad news or emotional stress 30 minutes after their meds. 

2) The way in which you are told stressful news. If someone has bad news for me and it’s kind of dropped on me like a bomb shell e.g. via text or said in a really panicky way, my body explodes hormone wise and can’t cope. Even if practically and logically I can process it, my adrenal glands have other ideas. On the surface, I look the same but there’s a tsunami going on underneath causing massive problems. If a non-AI person is struggling to control their feelings or stress to news or an event, it will be potentially harmful for an AI person. The human body reacts to cues from other people as well as what they say- if you’re notably anxious when telling me something, my body will pick up on that. 

3) The situation or context you find yourself in, which is emotionally stressful. Arguments and conflicts wipe people with AI out for a lot longer than other people. We can’t just rant or get angry about it, get it off our chest and move on, even if mentally we want to. It takes a long time for our body to right itself after an argument. If someone with AI tries to walk away from an argument or situation, it’s probably because it’s necessary to keep them safe not because they don’t care about the other person. I hate ringing call centres to complain because my body doesn’t cope well with it. I am, however, very good at complaint emails because I can walk away and go back to it later if I feel things getting too much. 

4) Other factors. Other things might have happened that day, it could be hot, over exertion, feeling under the weather… because AI is so dependent on how the body is doing at any given time, sometimes you can do everything right emotionally and still end up needing to updose.

There are ways to protect yourself though. E.g. I try not to get sucked into other people’s unnecessary dramas and have started to avoid people who push negativity which can impact on me. I do a lot of meditation so I can observe my thoughts and feelings better, but not get washed away in them. My grandma is in the latter stages of dementia so my mum has agreed with my husband that she texts him first before contacting me with any updates- if I’m not able to deal with it at that point he can tell me the news when I am. I avoid situations I know wind me up or ask my husband to take care of things.

It is important to recognise that it’s not just my mental health which can’t always cope with stress, it’s physiological (not psychological). I still want to know things and don’t expect to be wrapped in cotton wool. Like most things, if in doubt, ask. Ask how I’m feeling, or when my last dose was or if I’ve had a bad day. Think of it in a similar way to how you would tell a child bad news (albeit not as patronising! 🙂 )- you’d gauge their ability to cope, prepare them for hearing something upsetting and listen to their questions or concerns afterwards. That method actually works well with me too! 😉 I also don’t mind if everything goes wrong and I still need to stress dose- it’s a learning curve: if I can’t get it right and actually have the illness, it would be massively unfair for me to expect other people to get it spot on!

I realise that it might not be clear what constitutes as a ‘stressful’ situation if you don’t have AI, so I’ll write another post soon about that. 

Sometimes emotional stress is unavoidable though because you can’t micro manage everything, which makes the illness an interesting one to manage! You kind of learn with experience what things feel like and how much to take, but it’s still easy to get wrong. For minor things, I take a small 2.5mg bump, 5mg if I feel particularly shakey or consciously upset. If I get any low cortisol symptoms soon after, I’d consider 5mg extra or doubling my next dose. A lot of it is trial and error. The best part is, if something is particularly stressful, I ‘forget’ that I’m supposed to take extra hydrocortisone and my husband and my friends have to work hard to convince me that that’s what I should be doing! There’s no one size fits all either- some people stress dose for things that I wouldn’t and vice versa. It’s all part of the great guessing game which is having Adrenal insuffiency 😉 

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! 😉 

A ‘Suprise’ Party

My husband organised an early suprise party for my 30th birthday which was lovely. He invited lots of people, including friends I haven’t seen for a while, which was particularly exciting, although I just found the day exciting in general especially whenever anyone arrived! 

I used be an emotive person, in the sense that if I got excited or angry, I put all my energy into it. But since being diagnosed with Adrenal Insufficiency, I’ve had to learn to keep everything on a more even keel. Emotions, even happy ones, trigger a response in cortisol, which I don’t make, and therefore I come crashing down fast. 

Which makes the concept of a surprise party a tricky one for people with AI! For many reasons:

  • Everyone jumping out at me and shouting ‘suprise’ has the potential to make me very ill very quickly. Even if I appreciated the surprise (I used to love surprises) I wouldn’t cope with it! 
  • Excitement about seeing people (and I was hugely excited) without taking extra cortisol on board could make me ill.
  • It’s hard to pace your day if you don’t know you’re having to do a lot later on.
  • Just socialising and interacting with people is more than I’d do on an average day, so updosing was definitely necessary.
  • My husband had to buy food and tidy the house. To start with, he was going to get a friend to take me out while he did this but then he and my friend realised that I’d use all my energy and wouldn’t have any later so changed his mind. 

So I did have a surprise party, but my husband and friends had to be a bit more sneaky about it:

  • I went out with a friend the day before for his birthday and he told me to updose for some of the stuff we did, and then take a bump dose in the morning the next day too because of being ‘out the day before’. (A ploy!) You can’t updose every day though, but this was a special occasion which makes it justified.
  • My husband persuaded me a morning nap would be a good idea before everyone came over
  • Then he told me about the fact that we were having some people over when he produced the food he’d bought while I was asleep- there was a lot of it. He didn’t tell me who the people were though, so that was still a surprise. This was good because it meant I could double my hydrocortisone for the day so I could manage. So the surprise came with a warning!
  • Helpfully, everyone arrived and left at staggered times which helped with pacing.

I had a lovely afternoon. I did leave some people still chatting in my living room to go to bed and then slept pretty much all of the daytime the day after to recover but it was worth it 🙂 Thank you to everyone who had a hand in organising it or being a part of the day. 

Pain

Most people with Adrenal Insuffiency also experience some kind of pain as one of their symptoms. Flank pain, headaches and abdominal pain are all low cortisol symptoms which can lead to adrenal crisis if left untreated. However, it’s not the most obvious of symptoms to non-AI patients, so I thought I’d write a post explaining what pain I have on a regular basis. The problem with pain is that it lowers cortisol fast, which consequently makes the pain worse, which creates a cycle. Things like activity, the weather, and low cortisol all bring on the pain for me.  It’s worth pointing out that this is specific to me, so not all people with AI will have these aches and pains, and there will be others that other AI people do have that I don’t.
Stomach/abdominal pain 

It feels like contractions is the easiest way to describe it. Lots of people have this. It’s a constant, dull stomach ache which gradually gets worse and peaks before reducing and then repeating the pattern. It happens when I’m really low on cortisol or I’ve overdone it. One of the endocrine groups on Facebook did an informal poll and 15 women who have AI who also have had children said that this pain is worse than the pain they experienced while in labor with actual contractions. It’s so bad I want to and almost black out. Unfortunately I get it a lot. 

Headache/migraine 

I don’t know how you class a headache or a migraine but I get headaches where it feels like my skull, jaw, neck, eyes and ear are on fire and there’s too much pressure everywhere. It’s a new symptom for me so I haven’t worked it out fully yet, but lying completely still in the dark makes it partially bearable.

Cramps and spasms

If I try to do something like lift my arms over my head, they cramp up a lot of the time. Likewise my legs do if I try to do too many steps. My back and ribs lock up and spasm randomly so that it feels like someone is hitting me in the ribs or back. 

Skin 

My skin feels too tight and makes me feel like I want to pull it off. It also gets really itchy. I take antihistamines 5 times a day which helps, but sometimes the burning and itching happens anyway.

Random rib pain 

I call it random because no one knows why I have this but my chiropractor can feel it and alleviate it for a short period. She’s actually amazing because without her my general pain would be unbearable. I see her twice a week, but not on the NHS. It’s basically a pain across my diaphragm, in my ribs and around my back which kind of feels like a rubbing pain or an elastic band but mostly is this big pressure which means I can’t breathe properly. It literally gets stuck so my rib cage doesn’t move properly when I breathe. Part of the problem with this pain is that, unlike a broken limb, you can’t immobilise it to let it heal. Breathing is what makes the pain worse, but the pain makes breathing harder. So I’m stuck with it. It also gets a lot worse right before I end up in hospital. I take 4 different types of pain killers (8 different dose times) a day and put lidocaine patches on at night to try to make it manageable as well as seeing a chiropractor.

Joint pain 

My joints swell up whenever they feel like which makes them sore, particularly my ankles, knees and wrists. It makes it difficult to walk and stand when it’s really bad. 

Bone pain 

It sounds weird but it’s the best way to describe it. When I feel really ill, usually before I go to hospital, it feels like my bones are on fire. I’ve got osteopenia, which is pre-osteoporosis so that might cause it, but I don’t know. 

Sensory linked pain 

I really struggle with a lot of background noise/loud noise and lights or varying light versus shadow. It physically makes me ache, but I can’t really explain where, it’s kind of like a general flu like ache. It’s to do with processing light and sound around me, so if someone is tapping on a table while talking to me, I find it hard to listen to what they’re saying because I find it hard to filter out the noise (for example). Or sometimes I close my eyes and listen to what’s going on because then I don’t have to filter out movements and light around me and can focus just on what’s being said. Too much light and sound make my eyes and ears hurt too.

Like I said, it’s not an exhaustive list and it’s specific to me. I don’t ever feel ‘pain free’, I always have a constant level of pain, despite pain killers, physio and chiropractor. Something which helps a lot though is trying not to think about it too much. Sounds easier said than done, but the pain gets so much worse if you’re constantly dwelling on it. If you’ve got a bad back and you spend all your time going round and round in your head about how much it hurts and saying how it’s ruined your life, you’re going to suffer a lot. If you acknowledge you have pain but don’t put yourself under so much mental stress, you will suffer less. The level of pain will be the same, but the amount of energy and mental suffering you place on it will be less. 

Another thing which helps me is mindfulness meditation and body scans because it allows me to notice which bits I’m holding funnily or tightly because of my pain and relax those, which helps with my overall pain. It doesn’t make it go away, but it helps relax other areas of my body which contribute to it. 
The mistake a lot of people without chronic illnesses make is the fact that if they can’t see a person ‘in pain’ or the person isn’t talking about it, then they assume the person isn’t in pain. You kind of get used to what you’re dealing with. So the only time I really say anything about my pains or phrases like ‘I can’t do that, can you…’ is when it’s really, really bad. The rest of the time, I do things like holding my breath when my back spasms or sitting with my arm resting on the top of my head when my ribs are hurting me. You work out what alleviates your pain and manage it the best you can. People who wear glasses don’t talk about poor eye-sight all the time, but might still have issues seeing even when they’re wearing their glasses. 

The human body is clever, it adapts. It’s actually quite good at surviving a lot of physical pain. But whether that’s a positive or negative when it comes to chronic pain remains to be seen 😉 

Planning a Weekend Away

A couple of weeks ago, I went to see my niece who was born premature. It was a bit touch and go for a while and she was in hospital 2 hours away. Most people on finding out this information, would have jumped in the car at the next available time possible, even if it meant driving there and back in one day. I physically can’t do that – doing that would have meant I’d have ended up in hospital too. So we planned to go see her a month after she was born. Which I was obviously massively frustrated about. Having a chronic illness and travelling takes considerable planning as it is, but having an illness like mine which isn’t very stable at the moment is more complicated and there are certain things I have to do or check out first when planning a trip. At the moment, I mostly stay put at home because I’m not well enough to be able to make trips. However, my niece was more sick than I was and in the NICU, so this was an exception! Here’s how I plan for a trip:

  • Find out where the nearest hospital is, and then where the nearest trauma centre is. If there’s not one within 20 minutes ish of where I’m going, I don’t go. Most people go on trip advisor and check out local attractions and restaurants before deciding where to stay. I go on the NHS website and make sure the nearest hospital has an endocrine department! 
  • Packing medications/’equipment’. I tend to take 1.5 times the amount of medications I’ll need away with me, just in case. If I go away for more than a couple of nights, I also take things like my BP machine, thermometer, blood glucose machine and sharps box so that if I feel weird I can do checks myself and adjust meds like I would at home rather than having to guess or go straight to hospital. Basically if you’re ever ill when you’re away with me I can probably give you a similar service to an out of hours GP (disclaimer: Joking). This is what I took with me meds wise when I went away for 2 weeks. That was a while ago, I take more daily meds now! 

  • Documents. I have a letter explaining why I need needles and saline for security points, and also saying that people can’t confiscate or withhold my medication. But I also carry factsheets (translated into other languages if need be) about my condition and what drugs/tests/treatment need to be done in hospital. Some of my drugs are controlled so I take prescriptions as evidence they’re mine when I go abroad. I don’t have magazines in my hand luggage, I have lots of (prescription) drugs! 
  • Travel. Car is the best option because we can pull over and have rests whenever we want. I get a lot of pain from travelling and it tires me out even though I’m not driving, so we don’t tend to go far. I find places like airports and train stations hard because of the amount of walking/standing involved. Flying isn’t an option right now since it makes me very ill currently. Especially if there are delays- the last time that happened I had to ask the cabin crew to sort the temperature fast to avoid them delaying the flight further by sending me to the ER. 
  • Accessibility. I use this word to encompass everything I check out, not just ‘is there a lift because I have issues with stairs’. So things like is there parking nearby? Do the places we’re going to have toilets? Air con or do I need layers? Places to get water? Places/benches to sit down? Is there a lot of walking involved or do I need my wheelchair? Is there somewhere in the day I can have a nap? Are there places to eat which fit in with my normal diet? 
  • Accommodation. I can’t stay by myself overnight, so I had to visit my niece when my husband or my mum was available to be in the same hotel overnight, just in case. But on other occasions, like visiting friends or family, I suss out things like is there a bed/sofa bed (I can’t sleep on the floor) or make sure that the room I’m sleeping in isn’t too hot, dusty or damp. It’s not because I’m fussy, it’s because those things make me sick!
  • Meal times. I have ‘windows’ of time where I need to eat in to help manage my conditions. So brunches, late lunches/dinners can cause me problems. I also need to know what foods roughly I’ll be eating in advance so I can balance out my carbs for the day. I carry a lot of snacks with me, so, again, I’ve got you covered if you suddenly get hangry. 😉
  • Nap times. I nap most days as it is, but I definitely can’t go away and do more than usual without scheduling in some lying down quietly/nap time every day. It sounds boring, but it’s that or I go to hospital. Helpfully, I seem to have a similar nap schedule to lots of my friends’ babies! 
  • Emergency injection buddies. I usually go away with my husband but if I do go away or out for the day without him, there’s always one person who I’ve trained in how to use my injection and what to say to paramedics dispatch if need be. 
  • Activities before/after. If I’m going away, I won’t do much/anything the week before or the week after. Except for medical appointments. Basically I’ll spend most of the time in my pjs lying down and doing the absolute minimum. Sounds like most people’s idea of heaven, but I’d much rather be a functioning human being and have a social life that doesn’t just involve Netflix and Facebook! 😉 

    ‘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! 🙂

    Nurses’ Day

    Anyone who’s been an inpatient in hospital will tell you that it’s the nurses who make your time there more bearable. Aside from being the ones who physically give you the drugs, the good nurses are ones who help you out of many undignified situations (and join in with the laughing or crying depending on your mood); they advocate for you when your doctor isn’t quite ‘getting it’ (and then explain off the record afterwards why they’re such a grump/stresshead); and just generally have a sixth sense about what you need when you need it. If you get on the wrong side of your nurses then you’re in trouble (and you’re an idiot).

    I could talk about how they’re overworked and underpaid, but I doubt anyone goes into nursing thinking anything different (even if it’s wrong)- I know I knew to expect the same when I started teaching. They join the profession because they’re passionate about caring, which is pretty awesome. Doctors focus on lab work and tests and scans and then think about the human attached to them. Nurses are all about the humans and their needs, and use the information given to them to help deliver care. If you’re dying, it’s not a doctor standing with you while you take your last breaths- their bit is ‘done’- you can’t be fixed. It’s a nurse there. (Side note: Doctors can be great too, but this isn’t a post about doctors!) It’s physically demanding being a nurse, but it’s also emotionally hard too. How can you not care about losing a patient or seeing a patient upset? 

    I go to hospital enough and go to the same wards meaning I now recognise the nursing staff. I get really anxious before the change of shift because I’ve had some negative experiences in hospital in the past, but if I see a nurse I recognise I immediately feel so much better. I know they’ll look after me- they’ll fight with the docs if need be, or ring the one on call if I need something at night or try and work out some better pain relief. It makes such a difference, and I feel more relief seeing nurses I know than seeing doctors I know. That’s how much of an impact they have on my hospital stays. 

    I’ve got a few friends who are nurses in various fields who do great jobs. But I’ve got one nurse friend who has literally kept me alive for the last few years. Adrenal insufficiency is a stupid, volatile, unpredictable illness which is incredibly difficult to manage. There was a point where I was pleading with doctors to take me seriously when I was telling them I felt like I was dying and were it not for this friend saying ‘I believe there’s something seriously wrong’ I would have just keeled over and died at some point. Aside from support, he’s also helped me out massively managing my condition when it’s gone downhill fast, including injecting me last week with my emergency injection, plus he takes so much pressure off me by doing the mathematical nightmare that is my taper plan or helping me interpret what doctors mean, or translating my gut feelings/quirks into words that actually make sense to the doctors. He always comes to visit me when I get admitted, often after working a 12 hour shift and regularly ‘babysits’ me if I’m ill but not ill enough for hospital/I’m being stubborn (I offer him Netflix in return, I hasten to add). I could say more, but if I’m too nice he might think I’m seriously ill 😉 plus I’m liable to forget half of it. The gist of it is, I’m probably unaware of half the things he does for me and I wanted to say thank you. 

    My other nurse friends have also offered me advice/moral support/a listening ear when I’ve needed it, so thank you too. Another friend has constantly been at the other end of messenger whenever I’ve needed to rant about what’s been going on, which helps so much. 🙂 The other wonderful thing about nurse friends is you can pretty much guarantee that one of them is on a night shift at any given time to send a ‘I’m bored and I can’t sleep’ middle of the night text to! 😉 

    So happy nurses’ day, nurse friends/nurses who look after me and other patients. Thank you for what you do to make our lives more bearable when we’re feeling at our worst. 

    Photo: RCN

    To My Healthcare Assistants

    To my Healthcare Assistants, 
               Healthcare Assistants (HCA) can’t do an awful lot for me because I’m mostly able to wash, feed and change myself and I can go to the toilet without help. So HCAs tend to only really do my obs and answer my call bell. However, I had two very different HCAs when I was admitted to hospital recently. One was brilliant and on the Night Shift, one was terrible and on the Fay Shift. Ironically, the one on the Day Shift was training a student at the same time, which worries me that she was learning from her not great example! 
              So night HCA was really friendly. As soon as I got to the ward, you appeared and said hello, what your name was and asked if I needed anything straight away. Then once my new intake had been done, you came straight back and asked if I wanted a sandwich or a drink because you knew I’d been through a&e and they don’t automatically give you food there.    When you weren’t actively involved in patient tasks, you wandered around (quietly), keeping an eye on your patients, rather than gossiping with the other staff. That’s how you knew I hadn’t been to sleep, so you came to ask me why. I told you I was in pain and too hot, so you talked to the nurse in charge and came back straight away- which isn’t always the case- and said they were sorting some cocodamol and a fan. I said I’d maxed it all out so was there anything else and you immediately went back to him, again, not always the case, and got him to give me some oramorph. From the point you asked me, to getting the morphine was about 5 minutes- that’s bloody impressive on such a busy ward. My canular exploded everywhere and looked like a murder crime scene but you didn’t make a big deal, you made sure I was ok before cleaning up the mess. I didn’t feel well afterwards so you stopped to chat with me until I did, even though there was nothing you could physically do for me, it was a case of riding out the horrible feeling. But I really appreciated it because that’s actually what I needed- someone to chat to me and make me laugh rather than me sitting and crying. You talked quietly but politely to all of us so as not to disturb other patients.

             In the morning you brought us a cup of tea while you did our obs at 7am. What a luxury- that’s never happened before but it made such a difference after a bad night! But it was so nice waking up to a caring face rather than being shouted at and having light shone in our faces like on previous admissions. I was genuinely sad when you went off shift and you’re by far the best HCA I’ve ever had. 

              Day Shift HCA was kind of polite but abrupt. You were more interested in talking to the staff noisily over the ward, talking about patients as though we were tasks rather than humans. I know you had to explain things to your student sometimes but I’m also sure we don’t need to hear absolutely everything you’re doing with patients and their names in great detail when she’s not in the room. Particularly if you can just stand a bit closer to the person you’re talking to. It makes us feel like a source of gossip. You introduced yourself to all of us at the start of your shift, but you said very little to me. In fact, during the whole time you were looking after me you said ‘sit in the chair while I make your bed’ and ‘yes’ when I asked a question. Well, I’m afraid I can play the game too- Night Shift HCA actually changed all of our beds (in a very friendly, efficient way), so you didn’t actually need to do them all again. Maybe it was good practice for your student, but usually I would say something and try to be friendly and helpful. I didn’t really feel like it though. You talked to the elderly patients while working with them but you didn’t really talk to me- 1 sentence and a word. I might be ‘fine’ by your standards but Night Shift healthcare made me feel like I was being looked after, so I feel you could have made a bit more effort to interact with me. I do know all about your army career though, because that’s what you were talking to your student about. Your student tried to talk to me while she was making my bed but you didn’t (I actually found out later that it was her first day, in which case I thought she was bloody brilliant initiative and compassion wise- take note!). I also wasn’t impressed that when a porter brought me a stretcher so I could go to X-ray (he couldn’t find a wheelchair) you stage whispered to him ‘what’s that for, she’s perfectly capable of walking’, to which he replied ‘she said she can’t walk that far so I got her this’. Not satisfied with this, you said ‘I’d make her walk’. Erm, excuse me, I can hear you?! And also, if you’d bothered to ask me, I could have explained this to you- I look ok and sound ok but I can only walk to the toilet and back and even that requires a rest and a lot of sweating, shaking and dizziness afterwards.
              Interestingly, when I did almost pass out and felt sick on the way back from the bathroom and you had to help me get back in bed, your attentiveness changed. Suddenly you wanted to find out what my AI is and what you needed to be aware of. You came back to check on me regularly. You talked to me. I appreciate the attentiveness but would you have known what I needed if I had passed out? Why weren’t you talking to me before? What did you think I was in hospital for- just because I felt like it? Your student made the effort but you didn’t. 
                 A lot of being in hospital isn’t about what you’re being treated for, it’s about the way you feel about it. The science behind it, in most cases, is straight forward, but people aren’t machines and can’t just be scientifically fixed and moved along the conveyor belt. We need to be cared for and looked after and supported in order to recover the best we can. And for young patients who are independent, we get very little interaction sometimes because we don’t need hands on help. But the way we get better quickly is if our moods are good, we’re not feeling depressed and we aren’t just left to fend for ourselves with pills and meals being brought to us periodically, and talked about as if we’re not there. Because, frankly, that’s what prisoners who are locked up get, and we deserve better as patients. Night HCA was brilliant. Day definitely wasn’t (student was though).

    Having to use my emergency injection 

    I’m currently sat in hospital at nearly 2am and can’t sleep. It’s actually a very peaceful (I’m not saying the Q word) Assessment Ward, which makes a big change, but I’ve had a lot of random doses of hydrocortisone and my body clock has gone completely mad and doesn’t know what time of day it is. A bit like jet lag- you’re really tired and want to sleep but you can’t, it’s a similar thing.
           Anyway, earlier in the week I wrote about how I thought my endocrine system was struggling because I was wheezing and it was weird. I’ve actually been super sensible and was resting lots, but today I decided to go to the cinema to get out of the house and the very slight walking involved from the (disabled) car park tipped me over the edge. So I cried, felt sick, couldn’t breathe, felt dizzy, got sweaty and shaky… all the usual stuff. I could have got away with that amount of emotion while watching Their Finest the other day, but nope, there I am sobbing at the trailers for Guardians of the Galaxy. 
            After that my nurse friend took over and I don’t remember much. I remember feeling very out of it and feeling like I was drunk and sinking, but apparently I also very nearly passed out and was worse than normal because he gave me my emergency injection (thanks by the way!). It’s not my first adrenal crisis but I’ve never had to use it before, I’ve usually got myself to hospital or rang an ambulance in time, but this kind of sneaked up on me. I’m a bit sad I ruined my streak of not needing to use it, but it was necessary. Although I think the cinema staff were a bit freaked out that someone was injecting me in my backside/thigh in plain sight, but never mind! 
           We had a few hiccups with getting triaged- I don’t think they knew what adrenal insufficiency was and didn’t want to pay attention to my ‘life threatening endocrine condition/coma’ card. Usually they’re great, I just caught a not great nurse who thought I was being melodramatic. It’s not appropriate for me to wait more than a few minutes to be triaged, especially as I’d had my injection. I waited 20 yesterday. Not good. But I saw a wonderful medical doctor when they moved me on to AMU who mentioned the words ‘baseline’ and ‘stress dose’ without me saying them. That never happens! 
           It’s getting put down to a viral infection so far. The problem with taking steroids is that they hide a lot of ‘normal’ symptoms and I don’t necessarily get a temperature. Patients are regularly cautioned over excessive stress dosing so it makes us reluctant to do so unless there’s an obvious cause. I felt ‘weird’ all week, but feeling ‘weird’ isn’t a good reason enough to double dose. So I did a slight increase when I needed it but obviously the infection was still brewing and when I went out and had to walk, it made me worse very quickly. The bad thing about it being a viral infection is you can’t chuck antibiotics at it to make it go away, your body has to fight it. Which mine can’t do very well. 
          So I’m due a chest x-ray, had some bloods and fluids, IV anti sickness, IV paracetamol and some oral morphine. After getting to AMU my BP went up to 170/100 which caused a slight minor panic so I got 100mg IV hydrocortisone written up to top up my injection dose, which is given into my muscle rather than my vein. I usually have 200mg IV so that made sense to me. It made me feel more lively but it does mean my body clock is confused and it’s sadly starting to wear off. I’ve had the usual ‘that’s weird’ and ‘you’re a bit of an unusual case’ like usual. Oh and I had another cannula explosion which was even more dramatic than last time- it literally looked like I’d severed a limb, there was blood all over the floor, the wall, me, the curtain… It looks worse than it actually is thankfully! And for the first time *ever*, no one was called Betty or Barbara sharing my bay with me! Hopefully they’ll let me go home in the morning if my bloods and X-ray are good. I must have had some strange premonition because I downloaded a lot of podcasts yesterday. So that’s what I’m off to do now and try to sleep!