Rare Disease Day

Tomorrow is International Rare Disease Day. Practically everything has a ‘day’ designed to promote awareness about illnesses or to generate fundraising, but Rare Disease Day is a bit different. Individually, people who have a rare disease are unlikely to come across another person who has the same illness as them unless they’re actively seeking them out. But collectively, there are hundreds of thousands of people who have hundreds of rare diseases. So it means that we get the chance to feel like we’re not like a human living with a pack of wolves and feel some kind of unity (I’ve been reading the Jungle Book- can you tell?!).

I actually have the more common version of a rare illness. Primary Adrenal Insufficiency/Addison’s Disease tends to be autoimmune and is very rare. Secondary Adrenal Insufficiency, which I have, is far more common. However my presentation of Adrenal Insufficiency doesn’t technically fit into the primary or secondary box neatly, basically because no one has come up with a term properly, despite the fact that it’s quite common (in comparison to Addison’s).

I read an article recently which talked about the importance of having peer support for people with cancer and how lots of cancer patients feel isolated and depressed and feel like their illness is unmanageable. But by reaching out to strangers on the internet, they found they were able to cope better and had a more positive outlook. Makes sense, doesn’t it? No one likes feeling like they’re doing something alone. But imagine typing your illness into Google in your language and not finding much support at all. Or being the one of ten people in the country who has your illness. Thankfully, I don’t have that experience, as there are other people like me in the UK and thousands of people who have it and speak English, but I read on a forum that one woman in Portugal with my illness has to go to Spain to see an endocrinologist because there isn’t anyone in Portugal who can treat her.

Rare Disease Day is not just about probability or statistics though. You hear people being told that they’ve got a 1% chance or one in a thousand chance (or whatever) of developing X condition. While that’s terrifying to be that one-in-a-Y person, it’s sometimes a small chance of developing a well known condition. The more well known the condition, the more treatment options, information and understanding are available to you. Rare disease patients are usually met with a blank look from doctors, either that or mass excitement that they’ve found someone who has that ‘thing’ they’ve only seen in their textbook so far! You get used to being a training tool for junior doctors.

Take asthma for example, which I also have. Asthma can kill, it can impact your daily life and when you get a normal illness it can flare up and cause further problems. The same for my SAI. But unlike my SAI, I can go to my doctor and say X,Y, Z are happening with my asthma, what are my options. In plural. There are usually a few choices. The doctor can do checks in the surgery. If one treatment plan doesn’t work, I can try a couple of others to find one that suits me. I don’t often go to my GP for my SAI because they don’t fully know what to do with me, and usually end up either ringing the hospital or sending me up there. So I manage it myself until I hit hospital stage. And my endo is the one who gives me my treatment plan, my GP can’t and won’t change it without his say so. But my SAI has a bigger impact on my daily life than my asthma does and it can kill me a lot easier than my asthma can. But because asthma is to do with airways and is common, it gets the red carpet treatment.

A lot of it is to do with money. Adrenal glands aren’t particularly cool and you can’t jazz them up. We get a lot of charity cold callers where we live and they’re usually cancer and heart related ones- most people will at least know someone with cancer or a heart condition if they don’t have it themselves. The last one I turned down subscribing to said to me ‘do you not want to help babies overcome their heart problems early and stand a chance at a better life?‘. Yes, of course I do, but if I paid everyone who guilted me I’d be really poor! Can you imagine me knocking on someone’s door and trying to put a one line guilt inducing sentence together? Everyone knows that heart equals serious medical condition, but most people can’t even point to where their adrenal gland is (me included)! It doesn’t mean I don’t have a serious medical condition though. I asked one volunteer to donate to my illness’s charity if i donated to theirs and they said ‘no because I’ve never heard of it’. That said, there are pretty common cancers which still don’t have much funding allocated to them, so rare diseases really don’t stand a chance!

Money means research. Research means better knowledge. Knowledge and awareness mean better treatment pathways and protocols. Awareness means doctors thinking creatively to come up with different treatment options. Different treatment options lead to a better quality of life. Right now I have the option between hydrocortisone and pred, both of which are steroid, and that’s pretty much it. My emergency injection requires assembling and measuring it out, whereas epipens, used by many, are far more simple to use. Treatments haven’t developed since the illness was discovered really. Whereas diabetic treatments have improved dramatically over a similar period of time.

However, Rare Disease Day isn’t all about banging our drums and making a noise about how we need more help. It’s actually something to be celebrated. Most people who have rare diseases spend years trying to get diagnosed and will usually get told their problems are all psychological at some point. So the fact that we got a diagnosis is something to be celebrated- we didn’t just die like we would have done in the past. Our bodies are clever things because despite the randomness of our illnesses, they still kept us alive. It means that one of our doctors didn’t give up on us and was determined to help us and did a great job. You have to have a pretty good sense of humour and a lot of resilience while having a rare disease because you come across a lot more obstacles in healthcare than for common illnesses. Every time we see new medics, we have the opportunity to educate someone about our illness. We’re not passive patients because we can’t afford to be, which means we learn to advocate for ourselves. I’ve made relationships with some people I’ve never met before online which I wouldn’t have done otherwise.

Rare Disease Day is about spreading awareness and trying to promote change but it’s also a chance for patients to feel a sense of community, even if we don’t all share the same rare disease.

 

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I don’t like my new baseline 

I currently don’t like my new baseline. I’m pretty much sleeping my life away at the moment. Or I feel so hazy I have no recollection of what I’ve actually done when I’m awake. We’re nearly at the end of February and I can’t really tell you what I’ve done for the past two months since new year. 

I’ve had to reduce my baseline because my doctors are worried about the serious consequences of taking steroids long term and mine was higher than the average person’s (fair enough). My argument is what’s the point in safeguarding against brittle bones and cardiac problems when I’m 60, if I haven’t been able to get out of bed for 30 years? There has to be a balance between quality of life and quantity of life, and right now my quality of life is pretty non existent. 

I don’t like my new, lower baseline because I already had a poor quality of life on my previous one. Now I feel like I have even less quality of life. I’m asleep a lot of the day and not a lot at night*. Standing for a few minutes at a time makes me sweaty and shaky and need to sit or lie down. I feel really depressed because all of my energy is going into things necessary to keep alive so there’s none left for making my mood feel better or to do things to make my mood better. I’m really paranoid and anxious about things I know aren’t problems but I can’t shake it. I don’t sleep for longer than 40 minutes at a time at night (although earlier in the week it was 20, so some improvement). Everything hurts and my skin is really itchy. I’ve got my stomach ache and a pressure headache a lot. I’m so tired I don’t know what to do with myself so just cry when I hit exhaustion point. My dizziness has hit a new low because I feel like I’m on a boat and the ground comes up towards me now, which it never used to do. But because I’m eating more to try to stop myself from being as dizzy, I’m putting on weight again, which is a rant for another day. 

You might be thinking ‘well she’s still writing blogs and knitting’. I can only knit in short bursts and not around tablet times. So I knit until just before I start to get hot and sweaty/really dizzy then lie down for 20 minutes to recover or go to sleep. Then repeat. I blog on my phone while lying down in bed when I’m awake for ages at night because I feel really nauseous and anxious, because it distracts me, or I do it when I’m lying in bed first thing in the morning when it takes me an hour to be able to get out of bed. If I didn’t have these things to do then I don’t know how I’d cope with the rest of it! 

While it’s a good thing to be on a lower baseline long term, if I can stick to it, it’s really pretty terrible right now. It’s only been 10 days, but 10 days has felt like a long time when it’s really hard. 

* I don’t have an issue falling asleep and I’m not getting ‘too much sleep’ in the day which is why I’m not sleeping at night. It’s a bit complicated so I left it out, but it’s not to do with poor routine 🙂 

Reducing my Baseline

My current baseline (normal schedule of Hydrocortisone) is 15mg at 8.30, 10mg at 12.30 and 5mg at 5.30, but my consultant and I agreed that I would try to reduce this down again at some point. There’s a few reasons for this, so first some science:

The ‘survival’ requirement of hydrocortisone is 12.5mg a day. But you literally just survive and breathe and maybe digest some food. You can’t really do anything else except not die. The standard or maintenance baseline for the UK tends to be 20mg a day, because it’s slightly more than the survival dose and gives you the ability to function (apparently, I really didn’t).

However, those numbers don’t take into account people being human beings. It’s like putting fuel in an old banger of a car and the same amount of fuel in a brand new energy-efficient car and wondering why the banger can’t get as far. In the same way the old banger might have valves that aren’t working or a hole in the tank, human beings are made up of different characteristics. So some people metabolise hydrocortisone more quickly which means it doesn’t last as long in their system, or if you’re overweight, you’ll need more to function- like putting fuel in a lorry and a car and expecting the same results.

When my synacthen test came back lower than expected, I was allowed to increase mine to 25mg a day immediately and then chatted to my endo and we agreed with what I’m currently on (30mg a day) with the proviso I try to get back down to 25mg a day. This is because steroids have a whole bunch of side effects that come with them when you take them over time.

Cons include:

  • brittle bones
  • weak muscles
  • cardiac problems
  • kidney problems
  • blood sugar problems
  • eye problems
  • teeth problems
  • st0mach problems…

I could go on, but basically they have many side effects. I don’t read that part of the leaflet in the box of tablets because I don’t have a choice in taking them.

Pros include:

  • Not dying
  • Having some energy

There’s a charity in America that really pushes for a balance between quality of life and steroid side effects. This makes sense, because, chances are, if I’m going to get side effects, they’re going to happen anyway, it’s more a case of when rather than if. But I would be a really bad patient if I didn’t at least try, and I like my endo and he’s done everything right by me so far, so I’m doing what he says.

After my recent trip to hospital, I’ve spent the last 2 and a half weeks tapering. I bloody hate tapering, so it kind of makes sense to taper slightly more and get the horribleness out of the way while I’m still ‘used to’ the horribleness and see if it works. If it doesn’t, I can go back up again. I’ll be trying 15mg/7.5mg/5mg for a while and then maybe back to 15/5/5/.

It might sound like I’m just doing a token gesture in tapering, but I’m really not. I’m giving it a proper go. Ultimately, I want to be on the lowest steroid dose I can be because that’s what’s best for me. But if I’m a bit Jekyll and Hyde ish, fall asleep mid conversation or randomly start crying, then this is why! (Apologies in advance!)

Side note: if you’ve read this and thought ‘oh but it’s only 2.5mg, that’s easy’, I’m telling you now those 2.5mg make a hell of a difference! And I don’t recommend saying that to me while I’m trying to reduce my dose because you’ll definitely be met with an ogre-like response…!

To the people who don’t ‘believe’ me about my illness

To the people who don’t ‘believe’ me about my illness,

I’d like to start by demonstrating a level of compassion I don’t always feel I get from you after appointments or assessments. You have a hard job. You have to work out who deserves what help or treatment, the type of help people receive and justify your reasons why. I imagine you have stringent criteria you have to follow and that you are under scrutiny to meet targets and statistics just like everyone who works in the public sector seems to be facing, along with time limits for appointments. I see you as a person doing a job and don’t immediately assume that you are ‘out to get me’ just because of your job role and the fact the system doesn’t always work well. I’m sure you have a personal life which has an impact on how you are feeling during that day and how you interact with me. That said, I trust you to be professional.

Do you see me as an individual? Or have you already made up your mind based on my medical file and the way I walk into the room or what I look like? Do you keep an open mind? Do you listen to what I’m saying? There are some things I wish people took into account when deciding on how to help me:

I have a rare illness. It confuses lots of people, including consultants and specialists. Just because you haven’t heard of it doesn’t mean it isn’t real. You might have experience with lots of illnesses, you might think you’re good at sussing people out or that your quick google search tells you everything you need to know. But it won’t because there isn’t an awful lot about it on google. I know this because I get a lot of people visiting this blog looking for help which they can’t find on google. With respect, you can’t possibly have an accurate picture of what it’s like to live with my illness so don’t just assume I’m lying or over exaggerating when I explain. It’s isolating enough as it is being a rare illness patient without you highlighting it further.

It’s taken a lot of courage for me to admit I have a problem that I need help with. I had to leave a career in teaching, which I was good at. My husband has to look after me. I’ve lost my independence because I can’t drive or walk far. I have to ask people to babysit me because I can’t cope by myself in the evenings if my husband wants to go out and do something I can’t physically manage to do so can’t join him. I’m not yet 30, and I’m having to explain to you that I can’t always wash myself or need to be reminded to eat and can’t be trusted to sort my medications myself because I get it wrong or forget. I wish I was making it up, because it’s humiliating- I wasn’t always like this, I used to be fiercely independent and refuse all help from everyone. My illness has made it so that I’ve effectively got the same (or less) function as a pensioner. But I’m only 29, it feels like I’ve failed because I can’t function myself and now I also have to ‘prove’ to people that I’m as sick as I say I am so I can get the help and treatment I need.

It’s bloody hard getting out of bed everyday but I do it because I don’t have a choice. I’ve found ways to cope a bit because I’ve had to, but it doesn’t mean that I can. The thought that I might get the help I need, or see a new specialist who can help, both which might mean that things might get easier at some point in the future because of it is the only reason I get up some days. Telling myself ‘you’ve got this, get through the next 5 minutes, or the next hour’. Otherwise, why bother? It’s a miserable existence, made more miserable because I’m having to ‘prove’ how sick I am with an illness that no one has heard of.

It’s because it’s so miserable that I made a conscious choice after diagnosis. I don’t want to be the type of person who is defined by their illness. I have an illness, but I am also a person. I don’t want to play the ‘poor, chronically ill’ person. I want to laugh about it because it’s better than crying. I hide or ignore most of my symptoms every day because I don’t want the constant reminder of everything I’m missing out on because I’m sick. But, because I ‘don’t look sick’ you assume I’m making it up. I wish I was making it up. What does a chronically sick person look like anyway? Why do I have to ‘look’ like some stereotype? If someone were to make assumptions based on looks about sexuality or skin colour, it would be classed as discrimination. Why should invisible illness be any different?

Listen to what I’m saying when you ask me questions. Visual assessments are a good indication, but they can be misleading. And you’re a human. If you already judged me before the appointment started, your observations are already likely to be prejudiced or biased so you only see what you need or want to see. That’s human nature. It’s also impossible for you to be able to observe everything and type at the same time, particularly if your computer is angled away from me. Are you sure you saw every physical response and facial expression?

It’s also worth remembering that anyone can fake being sick, it’s faking looking well when feeling terrible that’s hard. Personally, I worked on looking well when I wasn’t while I was teaching so as not to worry my students. Other people do the same because they’re parents and have a similar ethos, or because their job requires it or various other reasons. So it’s a catch 22 for people like me: if we ‘act sick’ at these appointments we’d be lying. But if we don’t ‘look sick enough’ you assume we’re lying even when we’re not. What do you suggest we do? I genuinely would like to know because my brain fog means getting to the appointment and answering your questions was hard enough, never mind trying to work out what part you’d like me to act as well.

You have no idea what happens when the appointment is over. Or the preparation and logistics beforehand either. Did you know that attending your appointment is the only thing I did that week, because the energy involved wrote off the rest of the days? But you still want me to ‘prove’ it to you.

I’m sure there are lots of people who waste your time and demand help that they shouldn’t be entitled to, and it’s your job to work out the real from the fake. A lot of people who genuinely need help don’t want it and would rather be sat anywhere else but in your waiting room, but have to ask for it because they’ve got no choice. It’s a humiliating experience and it isn’t an easy process emotionally. So I’m asking you to bear the following in mind before making decisions:
– read my medical reports but don’t assume that you already know everything you need to know beforehand. Otherwise why bother asking me to come in?
– if you need to do extra research about my condition, please do it. Don’t just assume it’s not real because you haven’t heard of it.
– I understand the need for expediency but it’s really hard talking to someone who is typing all the time, especially if you can’t see their face. Look at me when I’m answering. At least then we can be sure your observations might stand a chance in being vaguely accurate.
– listen to what I’m saying. Ask more questions. Listen to the things I’m not saying but probably should be- read between the lines.
– I’m a human being with a story. If my treatment or support plan was to be decided based on an algorithm, a computer could do that- you wouldn’t have a job and I wouldn’t need to meet with you.

Yes you’ve got your tick box criteria, but disability doesn’t fit into boxes. And if you’re suggesting it does, your criteria needs changing because it’s discriminatory. Use some compassion and some thought. How would you like to be treated? How would you feel if you were me?

Appointments where you’re having to ask for help or are trying to access different treatments are stressful. You could make it a bit easier for us.

To the Triage Nurse

To the Triage Nurse,

Triage is where you assess patients and work out what they’ve come to hospital for and how urgently they need help. You do this by doing obs, asking questions and observations you make yourself. Speed is essential because there’s always a busy waiting room of patients and you probably get moaned at a lot for the amount of time people have been kept waiting.

It can also be stressful for us as patients. If you don’t go to hospital very often, it’s the first contact with someone medical. You have to try to explain your problem and you’re not sure what information might be relevant. You’re worried about whatever it is that has made you feel the need to go to a&e in the first place. Calm and reassurance is definitely needed at this point, as well as efficiency, because it sets the tone for how the rest of the time in the department goes.

As a chronic illness patient, triage is also where I make my own assessments. I go to hospital relatively frequently and know that if the triage nurse is ‘on your side’, then it makes life a lot easier. While you’re checking my heart rate and bp, I’m watching the way you respond to it, either by what you say to me or what your body language says to me. When you ask me questions, I’m paying attention to see if you’ve heard of my rare illness and know what it is or if you’re glossing over it because you don’t think it’s important. I’m deciding whether or not I need to start arguing or if you’re going to be an advocate for me.

The other day you didn’t know what my illness was but you didn’t dismiss it. You listened to my explanation of it, did my obs and said you’d ask the consultant for advice. I told you how I’m not a textbook case and that my bp goes up when I’m sick, not down, and you said you’d mention that to him too. I don’t remotely want to ‘tell you how to do your job’, but I’ve been here before and know what’s likely to come up. You took me seriously and I knew that you were going to look after me.

Sometimes the triage nurse is under pressure and just looks at my numbers and decides I’m ‘not that bad’, not taking into account that I’m up against a clock and things can go downhill fast. Other times they’ve seen so many time wasters that day they’ve become really cynical of most things. I usually look ok and sound ok and am pretty articulate, but mostly only because I’ve been there so many times before I know the routine. Occasionally, I have to get my emergency injection out and ‘threaten’ to do it there and then in order for the triage nurse to see that I’m not being melodramatic and I’ve been given life saving drugs for a reason. If I’d been triaged properly, I wouldn’t mind, I only do that when I know I need help fast. Doing the injection before having bloods taken can skew some tests, so if I’ve managed to get myself to hospital without doing it, the tests should be done as well.

Last week you were great. My heart always sinks a bit when someone asks me to spell my illness and doesn’t understand how much hydrocortisone I take. But you weren’t afraid of asking for advice, even with your student watching. You advocated for me to the consultant and got me a room quickly with minimal fuss. You communicated to me what you were doing at every stage, all in a calm and controlled way. You set the tone for my hospital admission well: I felt looked after from the moment I saw you, even when some things did get forgotten in the bustle of a busy department- you and your student nurse checked I’d had my meds when you saw me in the corridor and sorted it immediately when I said I was still waiting.

Triage might be the least contact a nurse has with a patient during their time in the emergency department, but it can be a really powerful and meaningful interaction for us patients. Thank you for not just doing your job efficiently, but also doing it effectively.

After Hospital: Recovering

Last week I was in hospital, just overnight, to get on top of a virus. Most people would think that being in hospital is the worst bit and the point where I’d feel at my worst. But it doesn’t really work like that for me sometimes.

There have definitely been times where I’ve felt absolutely horrendous while in hospital and I’ve felt better at home once discharged. Those tend to be the longer stays like the 2 weeks I had a few years ago and the 5 days admission last year. However, a lot of the time, the really horrible feeling comes after I get released from hospital.

I go to hospital when either I can’t get on top of an illness myself or something emergent happens. I’m obviously feeling terrible, otherwise I wouldn’t go. Once there, I usually get given IV hydrocortisone, along with other treatments. Depending on how much they give me, it works out roughly 5-10 times the dose of my normal oral medications I take myself. And I’m usually given that dose IV on top of what I’ve already had orally that day. In simple terms, it’s probably like drinking 5-10 espressos in one go in terms of the sudden boost in energy.

It can be a bit strange to get your head around. I’m in hospital, so I should be feeling terrible, but the best I feel in general is right after you give me that IV. And, depending on how sick I am, I can have that up to 3 times a day. I’m sick, I clearly need it because my body is using it up, but I don’t necessarily feel sick. It lulls me into a false sense of security sometimes because I feel like I can conquer the world, only to try to walk to the bathroom and feel poorly again very quickly.

The really horrible bit starts about 2-3 days after the IV stops- 2-3 days seems to be when my body catches up with any changes to medications. This is when I go back onto my oral meds, which is a stress dose (so double or triple my baseline). No matter which way you look at it, going from a lot IV back to tablets is a massive bump back down to earth. It’s truly horrible. It’s compared to a pregnant woman in labour’s hormones (I wouldn’t know, but I’ve read it)- everything feels a bit crazy. I feel possessed, if I’m honest. If you think PMT is bad in terms of what it does to your mood and emotions, times that by about 50 and that’s closer to what I feel like. Or I feel like I’m watching myself from above like some out of body experience. My body clock is all out of whack because cortisol is what keeps you in sync and the amount in my blood has changed so dramatically over the course of the last few days, it feels like I’ve been in 3 earthquakes simultaneously and I don’t actually know which way the sky is anymore or if my feet are on the ground. If you’ve ever tried to come off coffee cold turkey, would you be able to go from 10 espressos to a latte overnight? There’s also a bunch of physical symptoms as well, which I wrote about in this post, but sometimes the mental ones can be just as bad: your body is designed to put up with pain and illness and is able to fight it if your mind is strong. If your mind and emotions are all over the place and you’re mentally exhausted, it makes it virtually impossible to fight the physical symptoms. That’s why sleep deprivation works so well in interrogations!

If you add that with the fact that no one sleeps well in hospital, I’m feeling pretty annoyed/upset I had to go to hospital anyway, and I’m feeling awful because I’ve had some kind of normal illness, it’s even more horrible. But, when you’re in hospital, people literally bring everything to you and you can stay in bed and rest. When you’re released, you have to start functioning normally again. Even if you have people to look after you, you still might have to negotiate stairs, getting your own drink, doing small things. Getting out of the hospital itself to go home feels like a marathon. Little things which add to the fact that there’s been a massive reduction in meds makes it even harder.

So for me, once I’ve got over the immediate danger of whatever has taken me to hospital and had my IV HC, I ‘don’t feel too bad’. The real fun starts 2-3 days after discharge and then every 2-3 days after that. Because once I’ve left hospital, I then have to get down to my baseline steroid dose again from the double dose. I tend to step down 5mg every other day, and it’s every 2-3 days my body seems to ‘notice’ the difference. It might be ok and not as bad as I think it could be, but it’s a bit like standing on a cliff being told you have to jump- it might be ok, you might only break your arm, or all hell could break lose and you could bang your head. It takes about 3 weeks from after the IV stops to get back to my baseline, and then a little while longer to feel ‘settled’ and ‘back to normal’. It’s definitely not something I look forward to!

Wednesday didn’t go as planned: Hospital

Wednesday didn’t go as planned and I ended up in hospital. I haven’t really written about what happens when I go to hospital, but get asked a lot, so thought I may as well share! Plus writing this gave me something to do while I was actually in hospital.
I had a virus for a couple of weeks, like I said in my standby post, and I wasn’t getting on top of it. Then on Tuesday I made a stupid error and decided to try and wash since I hadn’t for about a week. This proved a bit much and my body decided to protest by giving me an upset stomach. Which is bad with adrenal insufficiency. So I had a bit of an ‘oh crap’ moment and contemplated ringing an ambulance. I got my hospital bag (it’s always packed) out and put it by the front door just in case, but I hate hospital so I was desperately trying to avoid it.

On Wednesday a friend came over to ‘babysit’ me while my husband went out for the evening. I laid down most of the time but I like talking a lot to this friend, got too over excited and I overdid it. Cue lots of nausea, numb legs, stomach cramps, lots of dizziness and pain. It wasn’t an adrenal crisis, but extra Hydrocortisone did very little and I didn’t want to get to crisis stage so, much to my husband’s joy, we went to hospital just before midnight.

I don’t usually have to wait when I go to a&e, much like someone who’s having a heart attack doesn’t have to wait. I have a card that looks like this:

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And there’s some kind of flag on my name because when I say my name and give my card over, the receptionist skips a lot of the questions and goes to tell a doctor I’m there so I can get seen immediately. Then I usually only sit down for a few minutes until the next triage spot opens up and I go to the top of the queue. Which doesn’t go down well with the other people waiting.

I told the triage nurse what had been going on and she did the usual obs. Then she said she was going to ask her consultant what he wanted to do with me and would come straight back. We went back into the waiting room and a few minutes later she appeared again with my barcode stickers stuck all over the sleeve of her uniform (means she’s sorting me out with tests) and said ‘I’ve got you a room but I had to kick someone out first so give me a couple of minutes. If need be I’ll bleed you here while we wait’.

Her student nurse, who was also in triage, came to get me and took me to a room in the majors section. Which meant walking past a corridor full of ambulance triage patients also waiting for rooms, which didn’t go down well either. Massive bonus points to the student nurse though- by now I was looking particularly sweaty and a funny colour from the little bits of walking around and feeling really sick. So I asked her for some anti sickness IV and she said ‘oooo yeah I’ll get on that because if you’re sick then you need IV hydrocortisone really fast’. Which means she’d gone away and had a quick look at what my condition was, since she hadn’t heard of it in triage- I was impressed!

Within a few minutes a senior doctor came to assess me. She said that she also thought it was viral too and ordered X-rays, bloods, IV HC, IV fluids, pain relief IV and the anti sickness. A porter came to get me for X-ray (more queue jumping) while the doctor gave the instructions to the nursing staff. X-rays are used to check for any infection or internal problems because I might also need IV antibiotics. I usually have chest X-rays but this one was an abdominal one because I was saying I had lots of pain.

Back in my room, I got my IVs the doctor ordered. A healthcare assistant came to put a cannula in, which is a needle in a vein in your arm where they can take blood from (which she also did) and put drugs in, done by a nurse. IV HC gets pushed straight in, it’s a massive dose in comparison to the tablets I take, as does the anti sickness. Then paracetamol and fluids get hung to go in more slowly. From checking in at reception until this point was about 45 minutes, so pretty fast. It’s usually about now things slow down because I’ve had the urgent checks and drugs so out of immediate danger, so I try to work out if I’m getting admitted or not. A good way to find out is by asking how long the fluids are prescribed over. If it’s over 8 hours, I’m staying at least that long.

Except this one was only over an hour and then they’d review me again. It also takes an hour for blood tests to come back from the lab so my husband said he’d wait until we knew for sure before deciding to go home or not. IV HC is a wonderful drug. The guy who discovered it said it was like watching people rise again from the dead because they could suddenly sit up and chat. For me, because it was heading towards morning, it meant my body could actually go to sleep rather than keep itself awake so as not to die (which is what it was doing).

When I woke up the fluids had finished but I hadn’t been reviewed. This usually means that the ED docs want the medical team to review me which means I get admitted to the ward. Me and my husband have this debate every time but he never wants to leave me because he has this hope that they’ll say I can go home. Sure enough, medical consultant in green appears a bit later and says he wants me to go to the endo ward if there’s a bed. So I send my husband home and decided to go to the toilet.

Now that I’d had the IV HC, I was a bit more with it and noticed how ridiculous I must look to everyone, having left the house in my pjs. Plus I had to take my IV bag and paracetamol drip with me because I hadn’t been unhooked yet. This is the look I was styling:

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There’s hardly any beds on endo because there are fewer endo patients than other departments who need beds, so a lot of cancer patients get put on there because there’s not enough beds on the cancer ward for them. Which is annoying because it means I then have to go somewhere else and block someone else’s ward with a bed I don’t need- it’s a cycle. They were really short on beds generally though because rather than ending up on an assessment or short stay ward, I ended up in the emergency women’s unit and gynaecological ward. If I were a more sensitive type of person (can’t think of a better word), this could have potentially been a bit emotionally scarring and could have caused further drops in cortisol and more problems- a woman of child bearing age being put on this ward, surrounded by people talking about babies/pregnant women. Pregnancy would kill me right now. But a bed is a bed, and not dying is my current priority! So it’s not something I can worry about.

When you get moved to a ward the nurses have to do a new intake, which is where they do more obs, ask you questions about whether you can walk around unaided and feed yourself, make sure you have your meds and get to know you so that they know why you’re there. I told my nurse about my HC being on a strict timetable and could she make sure it was charted for a time rather than just put down as a normal dose. Then it was time to get some sleep.

The healthcare who put my cannula in in ED gave me the option of where I wanted it, which was nice. I hate it at my elbow because it makes doing anything which bends your arm painful and hard work so I asked for it in my hand, which is a lot better! Except I sweat a lot when I’m not well and the plaster had lost its stickiness, so when I turned over, the whole lot kind of exploded out and bled everywhere. I’m not coordinated at the best of times but especially not now, so I was trying to avoid waking my bay mates, trying not to bleed everywhere, and also trying to reach my call button. The healthcare came in and had the patience of a saint because she didn’t remotely get annoyed that the bed she’d literally just made was covered in blood, as was the floor and me and somehow I’d got it inside my shoes. She just sorted me out, sat me in the chair and made the bed again for me. She was pretty ninja like though because she managed it all without waking anyone else up, stopped me from tripping over twice and got me a cup of tea.

I thought I’d washed all the blood off my hands, but when I went to the toilet the next morning I looked like I could have been in some kind of horror film there was still that much blood stained on them. Oops.

There’s always a Betty or a Barbara on my bay in hospitals (fact- must have been a popular name in the 30s). I don’t know why, but there always is. And they tend to have dementia which means they get really anxious at night and shout ‘help me’ all night every 5 seconds or try to escape. This week, there was a Barbara but only with the start of dementia, so it was thankfully quite peaceful!

The nurses had a bit of a rant in the middle of our bay when they were doing the drugs round the next morning. They were moaning about being sent medical patients (like me) and not having the medication to give them. So I already knew they were going to struggle with all of my meds. Worryingly, there was nothing written on my chart at all drugs wise. I gave a brief explanation of my adrenal insufficiency and why I needed HC right then but I don’t think they understood. So they let me take my own meds for that dose which I had with me and said they’d ask for the medics to review me to work out my other HC doses. I said it needed to be done within the hour, otherwise it would cause both of us massive problems later in the day otherwise, and, even though one nurse admitted she hadn’t a clue what I was on about, she did fix it within the hour.

There was quite a nice sunrise to watch.


I then tried to be arty with my tea mug, but failed!


Doctors do a ward round in the morning where they decide your plan for the day and if you can go home or not. Because I was on a random ward, I was seen by the medical doctors rather than the gynae doctors. The consultant had rounded up some enthusiastic juniors to bring with him to talk to me. This happens a lot when I’m in hospital because I’m an ‘unusual’ case so a good teaching case. I don’t mind- I’ve done my bit for the NHS this week now! Medical consultant said it was viral, increased my oral steroids and said I was feeling better so I could probably go home but he wanted to check what endo said first. Endo said as long as I knew what sick day rules were I could go home.

Paperwork takes a while so I knew I’d be there until after lunch. I didn’t need any prescriptions thankfully, otherwise I’d still be there waiting now!

I fought it out with the bedside phone, as there’s next to no mobile signal in that hospital, and a friend came to free me and look after me for the afternoon while my husband was at work. My ‘look’ was even better when I left the hospital, clashing patterns is a fashion statement right?!
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I said to the intake nurse that I was following a low carb diet for pre-diabetes but she didn’t have a clue what it was. And there weren’t any low carb options on the menu while I was there. So we decided that as I’d already broken the diet for the day, Burger King on the way home really couldn’t do any more harm! It tasted so good since I hadn’t eaten junk food for ages!

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My hospital stays aren’t usually for very long *touch wood*, but the IV drugs and fluids help me get on top of whatever illness my body can’t quite fight by itself. I usually have to go in once every 3 months. This time I went before I got really sick, so hopefully I might be able to bounce back a bit quicker!

Depression

Last week, a new diagnosis was added to my list: depression. Apparently, this stems mostly from the fact I’m on steroids, because one of the side effects is depression, but, with everything going on, it’s hardly surprising I’m depressed. On balance, I’m impressed I’m not more depressed to be honest- I’m still getting up every day and trying to have a sense of humour about it all.

Not that long ago, I would have argued and said I was ‘fine’ and not depressed. Some of that would have been denial, because my favourite coping mechanism for dealing with my rubbish situation is to make jokes about it. I make some jokes because if I said some things seriously it would make people worry and I’m trying to look after them. Other jokes are because I’m worried and I’m trying to pretend I’m not. Or sometimes, like when I’m in hospital, it gives me a distraction to whatever else is going on and makes me feel a little bit more ‘normal’ again. It’s a coping mechanism.

The other side of me arguing against depression is partly engrained because of some poor care I received from various health care professionals before being diagnosed with adrenal insufficiency. One of the problems with having a random illness is that once people have got to the end of what they know and can’t find a problem, they start looking for other things to ‘blame’ and mental health is a good scapegoat in some people’s eyes. And, sadly, some HCPs see mental health as ‘not their problem’. So even when I was insisting that I had a physical problem and I needed some serious help, the response I got a fair few times was ‘it’s all in your head, go away and deal with your psychological problems’ (direct quote- hardly compassionate!). Which, you can imagine, wasn’t overly helpful, because

a) I didn’t know what ‘psychological problems’ I was supposed to be ‘dealing with’ and

b) it made me feel like having any kind of mental health condition was something I’d either ’caused’ myself from not trying hard enough or

c) that it was some kind of ‘dirty’ illness they didn’t want to deal with (for want of a better word) and the Doctor’s door, both metaphorically and literally, was very firmly closed in my face. Mental Health conditions still require treatment and have a massive impact on people’s lives, but I wasn’t offered much, if any, support.

I was also pretty sure I was actually physically sick, which I was right about, and being dismissed like that nearly killed me. And, again sad but true, once something like ‘psychological problems’ gets written on your healthcare record, it makes it more difficult to ask for help from other people if the next person to come across it has the same attitude, which is terrifying if you’re trying to access emergency treatment and avoid dying. The problem is, from experience, the more you argue and get defensive, the more they put it down to ‘psychological problems’. Hence why I would have fought against having ‘depression’ written on there in the past. Some doctors, even the ones who should know better, really aren’t very good at treating mental health and think it’s beneath them, not their problem or a way of dismissing things they don’t understand, I’ve learnt. There’s a massive stigma surrounding mental health, but I don’t see how it can be broken when medics don’t want to acknowledge it.

Things are different though now. I’ve had many tests that ‘prove’ my physical diagnosis of adrenal insufficiency, which can’t be argued with and ‘blamed’ on depression, which means that doctors now have to treat both my physical illness *and* my depression- meaning overall more holistic treatment for me (hooray). I have a really good endo who actually seems to care about me and how my mental health impacts on my physical illness and vice versa. Like everything with an endocrine illness, it’s not as straightforward to treat as ‘take some antidepressants’, and requires a balancing act which will take time. But it’s a step forward and I’m open to ideas. It’s just a shame that my negative experiences with doctors previously have actually contributed towards the way I feel about illness now and have definitely caused some of my symptoms, as that’s something that could have been avoided with a bit more care and compassion on their part.