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! 🙂

Accessing Mental Health Care 

It’s Mental Health Awareness Week so I thought I’d share some of my experiences in accessing mental health care. I have depression, partly because my situation is depressing in general, partly because I’m taking steroids which also cause depression/low mood and partly because I don’t make a lot of the hormones/chemicals I’m supposed to, so I can’t actually control some of my anxiety and depression with therapy alone and need medication. 

I have to say, accessing mental health care can be just as frustrating and complex as getting appropriate care for a physical illness. And that says a lot, since I have many problems getting appropriate care for my physiological illnesses. However, I always have the ‘this is life threatening if left untreated’ card with my physical illness. It’s not quite so straight forward with mental illness. 

Waiting lists are long.

It’s the same for most services in the NHS, but, unlike physical illness, mental illness changes. It presents differently- you get used to it and it manifests differently and messes literally with your head. If a physical illness changes while waiting for specialist input, you can go back to your GP and put something temporary in place. That doesn’t always exist for mental health problems. And while being in pain or feeling ill for a long time on a waiting list is terrible, dealing with a mental illness feels a whole lot more isolating and wears you down so much, it literally messes with your head. Which makes everything feel so much worse even if it’s not. 

You don’t necessarily have appointments when you actually need them. 

Part of my endocrine condition means I get myself into full meltdown mode and I can’t stop it. Biologically, I can’t control it and the resulting panic attack or outburst can actually kill me because of the nature of my adrenal insufficiency. I can, however, probably do something psychologically about it before it gets to meltdown stage, but none of my doctors have seen me at that stage to be able to help. And I always seem ‘fine’ at appointments or I don’t feel like talking about stuff then. So, like other people, I don’t get the help when I’m actually having extreme issues, because it’s impossible to coordinate it, even if I can get some input into every day problems. 

Difficulties describing symptoms.

I’m pretty sure lots of people feel like this, but when I’m having a bad mental health day, I don’t really remember what goes on. Which makes it hard to explain what the problems are. If something hurts, you can point to it at the very least, but you can’t do that with emotions. So sometimes I say ‘I’m fine’ and I’m not lying, I’ve just forgotten that I wasn’t. The trouble is, some mental health professionals sometimes either assume you’re lying by covering something up when you’re not, or they assume you’re over exaggerating when you’re not. You have to find a practitioner who’s a good fit for you. Quite a lot of the time, the people who assess you in the community aren’t always medically trained and go by a criteria which clearly isn’t going to be easily applied to every person. 

You’re a bit stuck either way.

If you are proactive in trying to manage your condition, you’re seen as ‘coping’ so get less support or told to go away and come back in X months. A couple of my friends have been told that ‘depressed people wouldn’t be able to do that’ when they’ve discussed their strategies. The other side of it is, if you do nothing and leave it to the professionals, you’re often told you’re not doing enough to help yourself. It’s a double edged sword.

You’re made to feel like you’re ‘different’.

I get a lot of appointment letters from 4 different hospitals, 3 different trusts and various other medical people. But the only ones which come with ‘PRIVATE AND CONFIDENTIAL’ all over the front are the mental health ones. So automatically I feel like having a mental health problem is something to be secretive about. Which is stupid I know, but shouldn’t all my appointments either be private and confidential or otherwise? I can’t explain it, and it possibly is me being oversensitive, but being in that part of the hospital(s) feels weird. 

Other HCPs judge you.

They do. They see the medications you take or see ‘depression/anxiety’ listed and sometimes don’t take your physical illness as seriously, ‘blaming’ your problems on your mental illness. The amount of times I’ve had an asthma attack but been told it’s an anxiety attack (when it’s not) is ridiculous. Or I tend to cry when I have an adrenal crisis because my hormones are not functioning properly and it’s sometimes implied by people who don’t know the condition that I need to ‘get a grip’ of my anxiety, whereas actually it’s my physical illness causing it.

There’s a lot of admin.

Lots of mental health services operate under self referral systems, meaning you have to sort it out yourself. Which is the last thing you want to do when you’re feeling overwhelmed, and quite often the forms sit on my desk until someone makes me do it. Particularly if it means ringing people on the phone. Then you’ve also got to remember to be the liaison between your GP/hospital which can also be hard work. 

Limited sessions.

Like everything on the NHS, treatment is free but there are limited resources. Some therapies come with a limited number of sessions. With a physical illness, you can say ‘this isn’t working, let’s try something else’. With a mental illness, you might spend all of those sessions getting comfortable with your therapist and only just start making headway when you’re told ‘you’ve had your sessions, you need to be re referred or moved to a different service’. Even if you end up with the same practitioner, that gap in waiting can be the difference between progress made and negative progress. And it’s another waiting list…

Lots of people dislike visiting their doctor for physical illness, but it’s so much tougher going for an appointment for a mental health problem. You feel like you’re a failure, that you should just ‘get over it’ and, to a degree, a level of shame. Taking the step to ask for help is hard enough, let alone with extra hoops to jump through. Mental health impacts on physical health and vice versa, but there doesn’t seem to be joined up thinking between the two when accessing healthcare at the moment.

Looking After Mental Health

Maintaining mental health is a lot like looking after your physical health. In the same way that you can’t go to the gym once and come out looking like a Greek God/Goddess in terms of physique, you can’t do one lot of meditation and suddenly be cured of depression or anxiety. It seems quite obvious when you compare it to physicality, but the problem with mental health is that you don’t always realise it’s becoming a bigger problem until you’re stuck in a cycle. At least with physical health, you can see changes or you can measure it somehow.

Lots of people decide that they want to lose weight for their wedding or a special event and complete a burst of gym training or crash dieting to get there. Sometimes it works and they get the results they want for their event, sometimes it doesn’t and they get halfway and other times they can’t maintain it at all. A lot of the time, people who crash diet or focus purely on the event in mind don’t maintain their physical health afterwards. It’s great to have a goal or a target to work towards, but it’s healthier to incorporate it into your daily life than to do it in fits and bursts when there’s an event on the horizon. Why? Because if you work so hard to get the weight off or to be able to run a marathon, when you try to start up again after a break it feels doubly as hard. And you’re thinking ‘I could do this a year ago, why can’t I now?’. Rather than improving on what you had before, you have to start again and it’s demoralising, which means you’re more likely to give up than you were the first time around.

Mental health is the same. If you only practise self care or meditation or compassionate thoughts when you’re mentally struggling, it doesn’t work very well. It needs to be embedded into your routine so that you’re not fighting with your low mood and trying to adopt a new way of thinking at the same time, because it’s overwhelming. And you’ll probably end up thinking ‘this is stupid, it’s not working, I don’t feel better, so I’m not doing it anymore’. However, the problem with mental health is that it’s difficult to do a lot of the practices like CBT or reframing when you’re feeling ‘alright’, because you don’t feel the need to do them. You also feel a bit like you’re wasting your time dedicating it to some ‘stupid’ therapy which you don’t need at that second.

For me, I knew that I needed to set things up for when I was having bad days because of the amount of time I spent working with pupils who had mental health problems. Hence my star jar and happy photos in my phone. My problem was that when I got really stuck in a cycle is that I would forget that I had these things set up and not do them. Or I found CBT made me more anxious partly because my brain fog meant I couldn’t remember the process and I beat myself up about it, but also because I don’t necessarily have the physiological chemical response to it that makes you feel better for having done it- rationally I could tell you if I was looking for catastrophes that didn’t exist or fortune telling or projecting negative emotions, but I wouldn’t feel any better. Plus I’d promptly forget everything I’d rationalised out.

Someone who read this post recommended an app called Pacifica which has been really useful. It suggests activities to do depending on your mood, it takes you through it step by step, you can go back and look at things you’ve already gone over and it reminds you to check-in with yourself. This is exactly what I needed because my problem was never not being able to see my cycles, it was not having a clue how to get out of them and feeling overwhelmed by all the inner noise. I’ve not been using it long, but it means that hopefully I won’t be expecting myself to lose 10 stone of mental weight in a matter of minutes because I’ll have already established some kind of routine.