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! 😉 

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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. 

The People v O.J. Simpson

I’ve watched my way through all the comedies and light hearted TV series on Netflix, so have moved onto dramas and ‘real life’ stories. I quite like law and medical dramas anyway, but hadn’t come across The People v O.j Simpson until a friend suggested it. 

I’m a bit of a wuss when it comes to scary things. There’s a running joke with my friends that if it’s an 18 I can’t watch it and I should vett 15s before watching them- I can’t handle  scary things at all but I find legal and crime stories interesting! This had a ‘me friendly’ certificate on Netflix so I thought I’d give it a go.

I got seriously hooked. It wasn’t remotely scary, a little bit creepy in some places, but if I could cope I’m sure most people could! I’m not old enough to remember the original trial so I had no idea as to the outcome. Basically, the writers have taken evidence, court room testimonies and statements made by people involved in the trial, and produced a dramatised version. It’s really well done. Not all of it takes place in the court room though, so you actually get to see the defence and the prosecution developing their strategies and how the twist and turns unfold. It took a while to get over the fact that the actor who plays Ross Geller from friends was a major role, but other than that I got completely absorbed. (I half expected him to shout ‘we were on a break’ at some point). 

It also made me realise that a lot of being convicted in America isn’t to do with the actual evidence but how you tell your story to the jury. Even things like the jury not liking your lawyer can be enough to convict you. Scary! The show also highlighted how stressful it must have been for the jury living with a gagging order and supervision for the duration of the trial. I can’t believe that DNA evidence wasn’t fully considered as ‘proper’ evidence, considering how much we know about it now and how it’s relied on so heavily! 

I thought the choice of music was good- there was the right amount of silence versus sound track, plus added audio such as ticking clocks or heart beats to represent action on the screen. The camera work varied between inside the court room for the dramatised version that we were watching, but also recreating how it was broadcast to the country on the news by the camera angles used e.g. High up shots or off to the side where cameras would be positioned in a real trial. 

It was really interesting and it made me want to read more about it. I’ve since added some more legal and crime things to my Netflix list because of it! 

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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 😉 

Limits and Payback 

Well, if she can stand in front of a TV camera and argue with a politician about disability benefits, then she can get a job.’

I overheard someone saying this about a woman who was campaigning about changes made to disability benefits and how they penalise people in genuine need. Wow. It annoyed me for two reasons:

1) Does that person think that all disabled people are bedridden, unable to articulate themselves clearly or have a physical disability, such as being in a wheelchair?

2) How can that person possibly know what the woman is and isn’t capable of just by looking at her? No wonder disabled people face so much prejudice and discrimination if people make snap judgements for daring to fight for better treatment from our government in public. 

But it is all too common an assumption: if they can do X, then they can work. There is this myth that half the country are wrongly claiming benefits for disabilities which they have fabricated and tax payers need to question everyone who ‘looks’ like they could be at work. Actually, the percentage committing fraud is tiny and insignificant in comparison to the number of genuine claimants, and you’re always going to get people who play the system so it would happen anyway, benefit reforms or not. But that doesn’t make a good news story or win election campaigns.

Anyway, politics aside, despite what people might think, just because someone can do X, doesn’t mean they’re fit for work. I’m going to talk about two things that people with disabilities have to take into consideration in their daily living; limits and payback. 

Limits

The phrase ‘know your limits’ is often applied to alcohol consumption and is different for everyone. One person might be able to drink 6 pints, another only 1 before they reach their limit. In fact, the person who can drink 6 pints one day might only manage 3 in another day if they’ve not had enough sleep, not drunk enough water or not eaten. There’s a rough idea, but it sometimes changes. The same applies to disability- there’s a rough baseline but it moves, often depending on things like quality of sleep, hydration, ability to take nutrition… etc. 

The thing about having a job is you have to:

  1. Turn up at the same time every day and work a prescribed number of hours. 
  2. Be at work every day.
  3. Be able to travel to and from your job safely. 
  4. Do activities required by the job role, not what you feel you can manage.
  5. Conform to work place protocols (or your reasonable adjustments made by your employer).

Someone who is disabled might be able to do all of those things on one day. That would be like being able to manage 8 pints one night rather than the average 6. But then the next day would be like trying to drink the 6 pints again. Realistically, you’re going to feel terrible. You might be able to do it, but most likely you’d only cope with 4 or 5. Then the next night you’re expected to do it again and you manage a pitiful 2. Then your body gives up completely and you spend the next 3 days vomiting. Suddenly you’re not able to manage to get to work on time and do your job, let alone anything else on either side of it like making dinner. It’s not sustainable living like that. 

There’s a difference between being able to plan tasks around what you can manage within your limits versus having to do set tasks within a specific time frame while working. There are two things to consider here as well: 

  1. It takes a long time to work out your baselines and limits in terms of what you can manage, and it also can vary daily. Some  illnesses change so much every day it’s impossible to work them out. 
  2. A lot of disabled people don’t like admitting what they can and can’t do to the full extent, meaning they might push through something at work which then could have serious consequences to their health. Just because they’re doing it, doesn’t mean it’s safe for them to do it.

So yes, that woman was stood in front of the camera. But that was possibly her 6 pint day, and she’d only manage 1 pint days the rest of that week. Or she would be working with payback. 

Payback

As everyone does, disabled people look at aspects of their lives and think ‘I really want to do that, I’m going to find a way of doing it which is within my maximum limits but will result in some payback’. Some people might be thinking ‘well no, why should you be able to do it, you’ve got a disability and you know it’s a bad idea, don’t be stupid.’ The answer is because if we don’t, we don’t really live. And that’s a miserable existence, more miserable since having a disability already makes things tough. 

Think about it. The 6 pint person will drink more than that when they go on holiday or on a special night out. They know they’ll get the most incredible hangover the next day as payback but they do it anyway. How is that any different from a disabled person expecting payback for having done something? It’s not, but for some reason people assume that disabled people have to live their lives as hermits and not do anything that they might – dare I say it – enjoy. Payback is like a hangover but it can last varying amounts of time and present in different ways depending on the disability or illness. And unlike someone who’s had fun partying, disabled people experience payback for things they don’t like doing/want to do too which have to be taken into account e.g. Grocery shopping.

The woman on the news might have spent the next week lying in bed to recover, or in excrutiating pain, or even in hospital. But is it worth payback, standing up for disabled rights because benefits assessments are currently being done by untrained professionals who say you’re fit for work because you can sit and have a conversation for 30 minutes, ignoring the professional opinion of doctors who treat you? 

Yes. I think payback is completely justified then. But it would and should be anyway. Disabled people have a right to live without being made out to feel like a fraud or like they’ve done something wrong, just as much as someone who wants to drink 8 beers one night shouldn’t be automatically named an alcoholic or a hooligan. There are always people who take limits and payback too far and overburden the system, either because they falsely claim benefits they don’t need or because they need an ambulance because they’ve drunk 15 pints and poisoned themselves. But there are also decent, rule abiding people who just want to get as much out of life as they can, who don’t deserve to be tarred with the same brush and get the help they need and are entitled to. 


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! 😉 

    Harry Potter in Concert

    The Royal Philharmonic Concert Orchestra is currently touring the UK performing the Harry Potter and the Philospher’s Stone film score live at the same time as the film is played. I’m a massive Harry Potter fan and particularly love the Harry Potter film music, so I loved it! 


    We went to see it in the Albert Hall. There were performances closer to us, but I incorporated it into part of my 30 things list and I thought the atmosphere would be amazing. And it was. It was a great mix of people- film lovers, orchestra fans, Harry Potter geeks dressed in robes, children… it was really good fun. And audience participation was encouraged! 

    I studied conducting at university, but never did any film or screen conducting. I found it interesting to watch it being performed live with the film, because it obviously has to be really precise, but usually when the film score is recorded, it’s done with cues and times. This conductor must have really internalised his score and the film to be able to get it so spot on in front of a live audience. Incredible. And the musicians were amazing too. An entire film score, especially the length of a Harry Potter one, is a lot of playing to do in one concert! 


    There was also a choir with wordless parts throughout. You know their bits exist when watching the film, but because it was live their parts added more depth to the soundtrack. In fact, in general there was more depth to the music, especially in the lower brass. I guess it’s partly because I haven’t watched the first HP film on a large screen since it originally was released and the sound gets compressed a lot when it gets turned into a DVD. I also noticed a lot more of the musical devices used and our perception of some of the characters was different, which was interesting! All because the music was played live and more of a focus rather than in the background. 

    I think my favourite bit was actually the credits because they played them in their entirety and people stayed in their seats and listened unlike at the cinema. The orchestra played all of the themes we’d listened to for the last few hours and it just rounded it off nicely. And also got a really loud round of applause. 

    It was a great day out. We managed to get street parking right outside the Albert Hall (£14 ish for 4 hours), and the congestion charge doesn’t apply on weekends. Because I’m not up to walking far, we decided to have lunch in the Italian restaurant at the Albert Hall, which was a bit of a gamble because we hadn’t reserved and it could have been ridiculously expensive, but it turned out to be really reasonably priced and a nice meal. Plus we didn’t have to rush because we were already at the venue. I’ve only been to the Albert Hall once before so I loved being in such a historic venue. The same orchestra are performing the Chamber of Secrets next year so I’m tempted to see that too! 

    Banner photo: taken from the Albert Hall box office 

    ‘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

    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.