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 🙂

Where do you see yourself in 5 years- part 2

A year ago today, I wrote this post about the interview question ‘where do you see yourself in 5 years?’ Id forgotten I’d written it actually, Facebook reminded me. I was feeling a bit lost at the time because it was the first autumn term I hadn’t been working/teaching and I was still having to field an awful lot of ‘when are you getting better’ questions. I felt everyone was waiting for me to get my life back to whatever their expectations of it were and I was trying to accept that my life was going to be very different and not going to get ‘back’ to anything I’d imagined.

I finished the post by writing:

By the time I’m 30, I won’t have achieved society’s version of life milestones, except for having got married. I won’t be a recognised statistic. But I do hope that I’ll still be alive and trying to be the best version of what I can be

Well, I’m still alive. Tick. I haven’t achieved a bunch of milestones that other people have. But actually, despite being chronically ill, I feel it’s important to recognise and celebrate some of the things I have done this year, even though some of them might be relatively minor in comparison to having babies and getting a promotion.

  1. I set up Out With Animals, the other blog I write, and send animals to 3 charities internationally to try to make a child’s day.
  2. This year I really had to adapt a lot of what I do because I couldn’t manage like I did before. So I’ve learnt how to live and cope with being disabled which is not an easy task! Unlike becoming a parent or trying to get promoted, there aren’t m/any self help books telling you how to manage suddenly becoming disabled. Maybe I should write one…
  3. I set up my own (very small) business, Ok Then What’s Next Crafts. I’m enjoying doing it, and I’m not making a loss which is the main thing!
  4. I became an aunty again. That’s more my brother’s ‘achievement’ than mine but my niece had a 3 month early, reasonably dramatic entrance into the world so I’m still seeing it as an achievement that I didn’t end up in hospital with her because of the pressure on my adrenal system!
  5. We went on holiday to Devon. Doesn’t sound massive but I’m not very stable health wise so leaving the county is a pretty huge thing right now.
  6. My grandma died, so the Scottish part of my family is now gone. Not an achievement but it’s part of life and should be noted.
  7. I stopped trying to please everyone else as much. There were some ‘friends’ I should have distanced myself from a long time ago because of the negative impact they had.
  8. I’ve had a lot of hospital tests. I’m counting this as an achievement because I just get on with it, whereas there seems to be a lot of people who consider having a blood test or having to take pills a big drama.
  9. I got involved in lots of charity things. Like reindeer post for postpals, the advent challenge by the bible society and I’ve been selling poppies for the British Legion.

There’s possibly more, I just can’t think of any more right now. Feel free to remind me! 😉

While it might sound like I’m bigging myself up, it’s not really. It’s me taking stock of the past year and reminding myself that I have actually done something with the last year of my life, even if the achievements weren’t on a massive scale and mostly achieved while wearing my pyjamas!

A bump with a badger

We had a run in with a badger while driving home yesterday. One decided to cross the road pretty much as we were driving on top of his patch of road, so he got a big clunk to the head and us a broken fog light.

I’d just been asking my husband to ‘drive nicely’ because driving fast around bends always makes me feel weird anyway, but it was also dark, which makes it worse. My train of thought went something along the lines of ‘oh well it’s a good job you’d slowed down because otherwise he (the badger) might have written the car off!’, whereas his was ‘if I’d been driving faster, I would have zoomed past the badger before he poked his head out’. Either way, the badger was pretty stupid, because my husband’s car is the noisiest, least subtle car on this planet. So he must have been deaf and blind to not hear the car coming a mile off!

There wasn’t much time for my husband to react to it to brake, which is why he got clunked on the head. So I immediately said ‘guess I’m taking more hydrocortisone then’. My husband didn’t really get why, so I asked him what his heart, mind and endocrine system were doing- pretty much everything would be racing and firing on all cylinders. Meaning I needed to rectify mine.

Adrenaline still works. So I still got the surge of adrenaline everyone else gets and the racing heart, shakes, sweating and sugar-high kind of feeling. It’s the bit that comes after which is weird. It’s a bit like someone pulling a magic carpet out from under Aladdin cartoon style- he floats for a second still and then crashes to the ground. Then I feel sick, dizzy, shaky, grumpy, sweaty and all my muscles start to cramp up.

You’ve got to think about the incident but also what comes later. The actual badger bit wasn’t that bad. I had some HC and felt mostly back to where I’d felt before. However, I think about the last 24 hours and I realise how much the badger messed with me. I did updose but I obviously didn’t get it right judging by what came next.

It took me ages to get to sleep. I managed to crochet a lot of a hat in this time. I needed the toilet every half an hour and needed to drink a lot in between. I had weird dreams. I found myself eating ready salted crisps in the middle of the night, which I only do when something is out of sync. I woke up feeling terrible a lot. I spent most of today feeling like I was up against some kind of deadline and having to work at top speed. Despite the fact I don’t have a job or anything I needed to do. I found myself getting emotional or upset about things that made me angry 5 years ago, and then not being able to let them go. I wanted to nap but couldn’t. You get the idea. All because of a badger!

That’s a bit unfair on the badger though. He’s probably feeling way worse than me! I didn’t get my dose right afterwards is the real reason, but funnily enough, my sick day rules don’t have a ‘if you hit a badger’ section. The reason for my weird day? Adrenaline. When the body can’t make cortisol, it floods the system with adrenaline to compensate and to keep you alive from the imaginary bear attacking you. Hence my ‘I have a deadline’ feeling and angry emotions today. But because my body doesn’t have anywhere to put the adrenaline i.e. No Bears in my living room, you get stuck into a ‘adrenaline- hang on there’s no cortisol- have some more adrenaline’ cycle, which is hard to break.

It’ll pass. It’s not the end of the world. I actually find the whole thing quite amusing. And neither of us were hurt even if the badger isn’t a very happy chappy right now!

‘More at 4’

For the last few days, I’ve been trying this relatively new protocol recommended by some of the endocrine big wigs for when you’re sick. It’s called ‘More at 4’ and, unsurprisingly, involves taking more tablets at 4am.

It’s not something I’ve been told to do by my endocrinologist, but then a lot of what I now consider to be the norm regarding dosing hasn’t come from my endos. Unfortunately, lots are trapped in the very backwards mindset of NHS guidelines of ‘everyone should be on 10/5/5 and only stress dose if you’re vomiting’. My new endo also seems a lot more proactive about prevention of crisis rather than waiting until you get to crisis point. So I think he’d actually support this- I just haven’t seen him since to be able to run it past him. And, failing that, as one of the ADSG charity leaders said to us at a conference ‘your doctors can prescribe you your dose and you can stick to it, but they can’t control when you physically put the tablets in your mouth. Work out what works for you’. Best advice I’ve ever been given.

So anyway, I’ve been ill which requires stress dosing. New research into how viruses and bugs attack the immune system this year has shown that people who contract illnesses in the early morning are more likely to have difficulties in fighting them off because that’s when the body’s resources are at their lowest. And that’s in ‘healthy’ people. If you transfer this to someone with adrenal insufficiency, the body doesn’t stand a chance in firing up cortisol and other hormones to fight illness because it has no or limited production of these hormones as it is.

Here’s where more at 4 comes in. The official protocol if you’re really poorly is to take whatever your normal double morning dose would be at 4am, then still take your normal double morning dose at its usual time, and carry on stress dosing throughout the day. So my current 8am baseline dose is 15mg, so a double dose would be 30mg, making 30mg at 4am and 30mg at 8am. While I’ve been ill this week, I don’t feel like I’ve needed to have 60mg of hydrocortisone before 8.30am. Instead, I split my normal double dose into 2 and had half of it at 4am and half of it at 8am. So two lots of 15mg. Then I’ve taken my normal stress doses at my normal times after that.

If you’re feeling confused about the maths, join the club!

You always take your highest dose in the morning, but just because you take a bigger dose, doesn’t make it last in your system any longer than if you take a smaller dose. It’s to do with the way it metabolises. So I’m not putting myself at a disadvantage by not having a big 30mg in one go (which would be my usual stress dose for 8am) because it would still be wearing off by 11.30am anyway like normal.

It has made a difference having some at 4am. I’m not waking up sweating, shaking, headachey, feeling sick, feeling dizzy at 8am anymore. I usually spend 45 minutes getting up and out of bed, I’ve actually managed to get up a bit sooner since doing it, despite being ill. I don’t feel like I’m starting the day feeling catch up as much. It was really obvious the impact it’s been having when I woke up, had a drink, but forgot to actually take the tablets one morning. So ‘more at 4’ became ‘more at 5.30am’ when I woke up feeling terrible. Oops

The downside is that you have to set an alarm for 4am. But I’ve actually been sleeping a lot better afterwards for doing it. And I genuinely think it’s helping with the illness side of things.

I’d be tempted to discuss this properly with my endo and have it as a more permanent feature in my dosing. I have a feeling that I burn through my HC doses quite quickly and more regular dosing might be better for me (e.g. 5 times a day instead of 3- not more HC, just divided up more frequently). But I need to do my day curve test first before I make any permanent changes.

It feels like it’s given me a bit more control over being ill, rather than feeling permanently on the edge of a crisis, which is what usually happens. I still feel ill, but I don’t feel like all the wanting lights have started flashing on my dashboard for a change! So fingers crossed it’ll keep working and I’ll be able to taper much sooner back to baseline!

I love IV HC

First up, I haven’t had an adrenal crisis, don’t worry! But I’m currently sitting around hospital and have been since this morning. I’ve had some kind of infection for the past few weeks and have been trying to manage it myself at home by double dosing and doing more@4 (more on that in another post). The reason why I didn’t want to go to my GP for it is because it wasn’t really bad enough for antibiotics and my GP practice tend to not know what to do with me, panic and send me to the Assessment Unit at the hospital. Which usually involves a lot of wandering around feeling worse, being poked and prodded, sitting around and being told 4 hours later ‘why did your gp send you here when you could apply sick day rules and have had oral antibiotics?’ and some mutual eye rolling.

However, I hit a point last night where I thought ‘nope, I’m done with this, I do actually need some help’ and went reluctantly to my GP this morning. Who did send me up to the assessment unit, but he was an awesome locum who knew exactly what adrenal insufficiency is, knew all about the new sick day rules and didn’t panic remotely. But wanted me seen at hospital. If someone who actually knows what they’re on about wants me in hospital, I do as I’m told.

Anyway, I digress. The point of this post is I want to say how much I love having intravenous hydrocortisone. It’s a huge amount over my total daily dose of tablets anyway, but it’s like magic. You get given IV HC when you’re in adrenal crisis, but in my case today, because my body isn’t shifting this virus by itself and it needs some extra help. Normal bodies would be firing out lots more cortisol to fight illness, which mine can’t, so I have to replace it somehow.

The guy who discovered cortisol and cortisol replacement said giving it to patients was like watching them rise from the dead. They would literally be on their death bed and then sitting up and talking and eating within the hour. It works fast and it’s hard to describe.

It’s a bit like having the worst hangover ever and then it suddenly shifting and feeling normal again.

Or when you’ve had no sleep for 2 days and then you suddenly get all your energy back. But not in an adrenaline fuelled way.

It feels like you’ve been carrying a giant weight around or a slab of concrete over your head and suddenly you’re like superman and it weighs next to nothing.

For me, it meant my heart rate settled down and went back into a normal rhythm, I could sit up without sweating and shaking and I didn’t have to work hard not to pass out anymore. A lot of the time, it makes me realise how much I have to work at my sense of humour and temper on a normal day because my mood improves so much.

It’s worth pointing out I’m not some kind of addict. The drugs replace what everyone already has!

So if it makes me feel so much better, why can’t I take it every day? Because too much cortisol is also bad, although not as immediately life threatening as too little. You can, however, be put on a cortisol pump which constantly monitors and administers cortisol to keep it in line with what a normal person would do. This isn’t available on the NHS in the uk though and even lots of private endos don’t endorse it.

For now, I’ll enjoy the next couple of hours of not having to work quite so hard at staying alive. They’ve already offered me some more IV in an hour, but I’ll only take it if I feel I need it- the fallout over the next week would not be worth the feeling good temporarily now!

Third Wedding Anniversary

This week, we’ll have been married for three years. It’s a bit funny looking back at the Facebook statuses and posts from three years ago and thinking about what I imagined married life to be like. If you asked me then where I’d be in three years, it would look very different! Three years is the leather anniversary because it’s supposed to be when things get tough and to remind couples that they have to be tough in difficult times. That’s what Google told me anyway!

I’ve been told a few times by people treating me that I’ve taken being ill in my stride and just got on with it. If you add up all of the crappy things that have happened in three years for me, most people would perhaps experience them in their lifetime, if that, not in three years. I can’t change anything health wise but I can do something about my attitude towards it, so I try not to be a bitter and twisted person. However, one thing that does make me feel a bit bitter and twisted is the way our wedding day panned out.

I should also say that I found the TLC channel this week and have basically been watching Say Yes To The Dress on loop. Which means seeing all the princess fairytales and evil step mothers in all their glory. Along with 90 Day Fiancé for balance 😉 It’s made me think about our wedding and buying my dress.

Don’t get me wrong, it was a great day. Timetable and logistics wise, it went perfectly. Everyone we wanted to be there was there, although now I’d get rid of some people who came and replace them with new friends instead. It was a lovely wedding.

But I don’t remember a lot of it. Now I know I really wasn’t far off keeling over and dying from low cortisol, but I didn’t know that at the time. Probably a good thing really! I put on so much weight in the month before because of steroids and prophylactic antibiotics that my dress had to be let out a whopping 4 inches at the last minute. So I didn’t feel like a beautiful bride, I felt like a sea cow! Our vows were coordinated between me talking inhalers and how long I could physically stand up for. My husband basically held me up for our first dance because I was shattered and just wanted to sleep. I had to take my dress off in the disabled toilet half way through because it was stopping me breathing and causing a lot of pain. Then we had to botch it at the back so I could actually be a part of my own wedding and not just sit on a toilet floor. I didn’t dance at all even though I wanted to. There’s probably more that I compromised on, but like I said, I can’t remember it.

So I do feel slightly bitter that this day that we’d spent so long planning and is supposed to be ‘the best day of your life’ ended up being blighted slightly (a lot) by illness. It would be great to be able to do it again and have everything perfect but it’s too expensive and I’m also a lot more sick now than I was then!

When I find myself getting upset about it, I try to remind myself that while everyone might want a perfect wedding day, marriage isn’t perfect. There are things which crop up which you aren’t expecting and you have to deal with because that’s how life works. One perfect day doesn’t equate to a perfect life, probably the opposite actually. The wedding vows about wealth, health and solidarity are there for a reason, even if most people just ‘say’ them and don’t think about the meaning.

It’s very easy to look at other people’s marriages and think ‘they have it easy’. But guaranteed they don’t. It might not be quite as stressful as serious illness, but it’s all relative and, realistically, you’re never going to know exactly what’s going on in someone’s marriage anyway because people won’t necessarily talk about it!

Things happen. It’s how you respond to them that’s important. It’s been a different three years from what I imagined but there have been good times despite the challenges. I wonder what the next three years hold!

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?! 😉

Keep Calm & Carry on makes invisible illness hard

British people are known for their stiff upper lip, keep calm and carry on and ‘man up’ mentality. If we all pretend something isn’t happening, it’s not really happening. We must maintain our lives the same as they’ve always been, at all costs.

This attitude is the foundation of a lot of problems surrounding invisible illnesses. When you get diagnosed with one, you kind of go through a few stages:

  • It won’t change my life. I’ll carry on as normal
  • This is actually bloody hard, maintaining the illusion of normalcy
  • Ok. I need to make some changes to the way I live. But I’m not asking anyone for help
  • People keep criticising the way I do things. I think they think I’m lying
  • I do actually need help with this. But I’ll only ask people close to me because I feel bad
  • It’s frustrating having to justify myself all the time; The criticising people step up the critique the more you ask for help.
  • I’m not going to justify myself anymore. Criticise me all you like. I need to do this to cope.

Part of it is the disabled person wants to keep things as normal as possible at first, so they try to keep it an invisible illness. But that’s why I think the keep calm and carry on attitude is so damaging- it pushes you into a state of denial from the word go and makes you feel like you have to get on with it. But it also makes it difficult for everyone else to empathise with you because they never really see what an invisible illness looks like for them to consider it normal because we’ve been conditioned to hide it.

It boils down to people still thinking that illness is a weakness. From the second we leave the womb, our bodies start to fail us. We get bugs, have injuries and we start a process that ultimately ends up in death. Whether it be 2 hours from birth or 200 years. So why is illness a weakness when everyone ends up the same anyway?

I’m really bad for admitting when I need help, letting people see the bad side of it and expressing when I feel ill. But I mostly feel like that because when I’ve tried to ask for help or say what I feel like in the past, even for non illness related things, people have told me to get on with it and toughen up.

So we can bang on about people not being judgemental about invisible illnesses or accusing us of being liars or exaggerating our illness because they’re invisible, but really it’s a wider problem. It’s ok to show weakness and ask for help. If you’re not listened to or not believed, the problem isn’t with you, it lies with whoever conditioned that person to believe that the only way to live was to keep calm and be in complete denial as to what’s going on in life.

No one has the perfect life. What does it look like anyway? If someone tells me to keep calm/calm down when I’m having one of my hormonal endocrine meltdowns, I tend to reply with ‘this is positively calm- if I wasn’t, you’d have been punched in the face by now!’ 😉 illness happens to everyone. Instead of tearing each other down and looking for holes in the person’s story about their illness, we should be supportive.

***Although, disclaimer, I also really hate it when people do over exaggerate their illness or milk it for all it’s worth because it makes it so much harder for the rest of us when we get tarred with the same brush!***

It’s never ‘just a cold’

I hate cough and cold and stomach bug season. I’m particularly scared of stomach bugs and flu, because those would 99% likely earn me a trip to intensive care. However, I’m also practical enough to recognise that if I’m going to get sick, I’m going to get sick. I can wash my hands and take precautions like having my flu jab, but people get sick. It’s life.

Except having adrenal insufficiency makes it complicated. It’s never ‘just’ a cold. Most people can carry on with life with a little bit more rest and fluids. A cold can wipe me out for weeks. Here’s why ‘normal’ illness is tricky for people with AI:

1. There’s a pre-illness phase. Most people can say ‘I feel like I’m coming down with something’ but I get a ‘I feel like I feel like I’m coming down with something’ phase. So before I even have anything that remotely resembles any kind of illness, I’ll have a ‘feeling’ which is a kind of pull behind the eyes, more lethargy (if that’s even possible) and my tolerance for things goes down to basically nothing e.g. Standing for a few seconds or walking for a few metres feels like an endurance test and then I need a 4 hour nap to recover. Trouble is, it’s only really obvious after you’ve got sick what was going on. Before it could have been any number of things making you feel like that!

2. Steroids mask symptoms. So I might not get a temperature but still have an infection. In fact, my temp goes down to 35.8/35.9 right before I get sick and then shoots up fast.

3. We tend to have issues with our immune systems. Steroids mess with it but lots of PAI patients have immune disorders. It means we catch a lot of bugs basically. And then our depleted cortisol reserve means that a cold can quite easily become a chest infection.

4. We have to apply sick day rules which means doubling or tripling our steroid dose. However that involves maths and rational thinking, which is difficult to do at the best of times let alone when you’re feeling ill! And also remembering what you’ve taken and why gets tricky especially if adding in nighttime doses. Vomiting or upset stomach becomes a bit of a drama because that’s when you have to think about injections and hospitals. You spend a lot of time foggily thinking ‘do I feel crap because I’m sick and a normal person would feel like this or do I feel crap because I’m heading to crisis?’

5. There’s such a thing as ‘too ill to sleep’. Sleep is what you need when you’re sick. However, when you’re sick your body is supposed to make lots of cortisol fast to help fight illness. Replacing cortisol is a lot of guesswork and the body makes adrenaline to compensate when it senses it’s lacking cortisol. This then makes it hard to sleep- basically your body thinks it might die so it won’t let you sleep. Which makes you burn through cortisol quicker. Then it can quite quickly flip to not having enough cortisol to keep you alive and you can suddenly find yourself unable to wake up. This is more likely to happen overnight than any other time.

6. You have to keep eating and drinking. Lots of people don’t want to eat when they’re ill. We don’t really have that choice because if we don’t eat and don’t have enough cortisol, we could have a hypo (drop in blood sugar) and end up in a big mess. Not eating and drinking= trip to hospital.

7. We can’t necessarily take over the counter medicines. Chances are, if you have AI, you probably also have other medical conditions. I personally can’t take decongestant (which is in things like night nurse and lemsip), anything with paracetamol based products in, and cough sweets or syrup unless they’re sugar free (but they have laxatives in- fun!).

8. It takes ages to recover. Even if you didn’t end up stress dosing, it knocks you sideways and your body is playing catchup. Even something simple as a slight cold can take a while to get over. And if you did stress dose, it takes longer because you have to get back down to baseline. If you try to get to baseline too quickly, the bug can come back. But the longer you’re on a higher dose, the harder is to get back to baseline. Tricky.

So the safest thing to do in winter is to hibernate.

But that’s not living. So here’s what I do to look after myself:

  • Wash my hands regularly.
  • Avoid close physical contact with people
  • Have my flu jab
  • Learn what my ‘feeling before a feeling’ symptoms are and pay attention to them
  • Not get steroid guilt about stress dosing and stress dose earlier rather than later
  • Wear a scarf that I can pull over my mouth and nose when I’m in busy crowded places. Ironically that includes the hospital!
  • Avoid people who are sick. I don’t mean a slight cold because I can pick that up anywhere. But if it’s making you feel terrible it will make me seriously ill. And any kind of sickness is a definite ‘stay away’!
  • Avoid people who have had a live vaccine (that I haven’t been vaccinated against). The flu vaccine that kids get is a live vaccine so if I hadn’t already had my flu jab, I’d have to stay clear for a while. Likewise for things like shingles vaccine. Normal vaccines are fine though.