My Amazing Hospital Stay in Cumbria

It’s not very often you see the words ‘amazing’ and ‘hospital’ in the same sentence! For those new to my blog, my Adrenal Insufficiency puts me in hospital quite a lot, albeit normally in the Midlands, which is where I live. But I grew up in Cumbria and my parents still live there, which is how I ended up being admitted there last week.

One evening, I suddenly started getting bad diarrhoea and my BP and HR went pretty high for no reason as far as I could see. Those are all red flags for my illness, so I tried my usual tricks to avoid hospital, which didn’t work and then reluctantly did my emergency injection and my parents took me to a&e in Carlisle.

I really, really didn’t want to go to hospital in Cumbria. Because my illness is rare, I regularly have to explain or argue what I need to medics even in big hospitals. It’s considered (or at least it should be) as life threatening as a heart attack and it needs acting on fast to avoid me becoming critically ill. How was a small, rural hospital supposed to have any idea what to do with me? I had visions of being sent over to Newcastle.

I was really wrong and needn’t have worried. Pretty much from the second I arrived to the moment I left, the care was spectacular. I’m pretty critical of hospital treatment, like I said, I’ve had *a lot* of experience. And I’m good at reading between the lines. So for me to say that my care was spectacular is a huge deal. I was seriously impressed. Here’s why:

Everyone was friendly. I mean everyone- healthcares, receptionists, radiographers to cleaners. Everyone who even remotely looked at me said hello and introduced themselves.

No one moaned about their job or being overworked/underpaid. There were no excuses of ‘we’ve not got enough staff/I’ve not got enough time to deal with that/it’s been a horrible evening…’ like I usually get, even when I’m being polite and asking for basic care. The hospital was full, there were no beds but everyone got on with it cheerily and, more crucially, apologised for things when needed. Apologies, in my experience, are rare in the NHS.

I was treated like an expert patient. Because I’ve been forced into a position of explaining stuff to medics so often, I’ve become an expert in my illness. But I’m not always treated like I know my illness well. The first doctor I saw, José, took my emergency info pack from me, told me his plan to run the sepsis protocol and then asked if I wanted him to do anything from my perspective, so I asked him to run the Addisons protocol too. Which he did. It was great- he was clearly in control of my care, which meant I could ease up a bit on trying to keep tabs on what was going on, but he was happy to listen to what I had to say to inform his decisions. The same with the triage nurse- she didn’t know what my illness was, checked with me and then went off to check with the nurse in charge. When I said I needed an IV put in ASAP, she took me seriously and got me a bed within seconds.

They acknowledged I’d been through it before. They still told me what they were doing but José asked me where the best place to put a cannula in rather than just jabbing me a lot. Or Carmella, a really good medical doctor, recognised that being in hospital regularly must be my norm so asked me what was different this time from other times. Just a few simple sentences, which managed to convey empathy.

There was a lot of empathy. In a non-annoying way. People seemed to actually care. I take a practical and ‘get on with it’ approach to hospital anyway, but mostly because that’s the general attitude I get from staff- it was nice to have someone care a bit about me as a person rather than just seeing me as a walking illness.

Communication was amazing. The NHS isn’t really a national system. In the Midlands, I’ve got my medical records, red flags and alerts set up in the local hospitals. But these can’t be accessed anywhere else in the U.K. Bearing in mind they only had the information I gave them in my homemade emergency booklet, and they only had one copy, it was amazing. Everyone who came to talk to me had read my info, the treatment plans were spot on and everything was handed over perfectly at the relevant points. This never happens! I’ve never had such a smooth transition from a&e to medical consultant to ward. It also meant I didn’t have to explain everything over and over. I don’t mind educating people in adrenal insufficiency, but it made a nice change being able to let other people look after me, rather than having to suss out if they knew how to treat me or not (people have a tendency to pretend they know and get it really, really wrong)

People didn’t second guess or make assumptions. My biggest gripe in hospital is people looking at me, assuming something and getting it wrong. I look ok and sound ok when I turn up to hospital but no one dismissed me because of this, like is often the case. I’m young and seem mobile but I actually struggle with walking distances, so I appreciated being asked if I needed a commode or if I could walk to the toilet. If there were any slight contradictions, someone came to check with me or my nurse.

If staff said they’d do something, they actually did it. Basic, right? So many times I ask for something or someone says they’ll ask the doctor and they don’t, whether it be they forget, decide I’m just being annoying or can’t be bothered. Here, they actually did, and if there was a delay or a reason, they came and updated me.

I felt like staff cared. Because I’m young and can go to the toilet myself, I usually get left to it and ignored by staff in hospital. Even at obs times, it’s not unusual for a healthcare or nurse to blank me and carry on with their own conversations or use it as an excuse to moan about how busy they are. But in Cumbria, the healthcares made a point of popping in for a chat every half an hour or so, asking if I needed anything. It made a lot of difference mentally.

I have to follow a low carb diet to manage my endocrine conditions but I’m also dairy and gluten intolerant, which usually gets a lot of eye rolling and complaints from staff. In the Midlands, I’m regularly told there isn’t any food available for my diet, despite it being a medical diet, and told to ‘eat what I’m given’. Which usually ends up in me eating too many carbs and having hypos (because if you’re admitted for diarrhoea and don’t eat their food, they chart it and you can’t go home until you do!). My husband brings me food normally. I told my healthcare before breakfast and she didn’t bat an eye. She said I might have to wait until after 8 for breakfast because of the kitchens not knowing I was there but she gave me the gluten free and dairy free options. She was horrified when I told her about the attitudes I usually get! And by 8.10 she’d brought me my breakfast and produced a gluten free menu for the rest of the day.

The food was really good! Highlights of the day in hospital are meal times. But hospital food is usually cold (luke warm if you’re lucky) and stodge. An NHS ‘classic’ is shepherds pie, with roast potatoes, boiled potatoes and turnip, as seen here in Coventry.

So 3 lots of potatoes. And ridiculously high carb! Here’s a low carb option someone cobbled together in the Midlands when I insisted once- sausage salad?!

The menu the healthcare brought me in Carlisle was brilliant!

You’re lucky if you’re even offered a choice in most hospitals, and even then they narrow it down to 3 options (it’s quicker for them if you’re not given a choice). My healthcare noticed I hadn’t chosen any pudding for the day and I said I couldn’t eat most because they had dairy in but the tinned fruit had lots of syrup in so would make it high carb so I couldn’t eat that either. She said she didn’t want me to miss out and asked if actual fruit would be ok and went and tracked some down for me. This meant a lot because she wasn’t making me feel bad about my stupidly awkward diet, she was helping me manage my health while in hospital and she cared about my mental wellbeing. She wanted me to be happy with my meals and enjoy them. When it arrived, it was HOT and it came with a full break down of the ingredients and nutrition, so I had the carb count on the packet. This made my life so much easier!!

These meals might be available in my local hospitals, but I’ve never been offered them, even when I’ve specifically asked for them.

No one tried to lock my medications away. If I’m honest, I tend to lie when I’m asked ‘do you have any of your own medications with you?’ Because I have a complete set in my pre-packed hospital bag. But if you tell people that, they take them off you and lock them away so that they can dish them out to you (fair enough). However, since mine are strictly timed and I can die if they’re late, I don’t hand them over without a fight. On this occasion, I had to admit I had them because I needed to take them at the time I was being asked the question. The nurse asked if I wanted them locked away and I said no, which he said was fine, just don’t take any unless they’re charted. Fine by me. It’s nice to be trusted for a change.

Possibly the most important for me, I didn’t have to argue with anyone about hydrocortisone dosing or time sensitivity. Hydrocortisone keeps me alive, without it, I die pretty quickly. It’s a very strict schedule (4am alarms anyone?) and this is never usually appreciated by staff. It becomes even more crucial I have the right doses at the right times when I’m in hospital, since that’s the whole reason I’m there. There’s always a mix up about how to dose (IV or oral), how much to dose (it doubles or triples depending on circumstance) and what times to dose. Lots of nurses think I can just take it whenever and it’s fine. But it’s not. I usually have to spend most of my time in hospital pushing my call buzzer, insisting I’m given my meds or having to say a lot ‘if you don’t give me them, I can die, they’re already late’. (in case you’re wondering- this is why I keep my oral meds. But I don’t have my own IV ones, hence the arguments to get them) It’s stressful and I regularly end up crying at the nurses’ station begging people to give me them. But I didn’t have to do any of that. The staff used my oral schedule and knew the standard IV schedule either from my info pack or because they’d read up on the guidelines. I didn’t have to ‘check up’ that the doctor had written it up or that the nurse would get it, they just did it. It made the whole experience much easier, less stressful and I could actually concentrate on getting better, not on trying to keep myself alive.

My stay in Carlisle hospital was great as far as hospital admissions go! But… I realise I’m getting excited about things which should be happening everywhere else but aren’t- feeling cared for, getting fed food which won’t make me more ill, being given a treatment plan which helps me get better. This hospital faces the same issues as the other ones I go to- overworked staff, underpaid staff, lack of beds etc. Yes it’s rural so smaller, but that means they have less staff to start off with and have different challenges to manage. That’s the first time in hospital where I haven’t cried at any point. My big question is, if they can do all that there and make me not feel traumatised about an aspect of it, why can’t they do it everywhere else?

As a chronically ill person with a volatile condition, I probably have some kind of medical PTSD largely induced by some really bad hospital experiences and people not seeing to care about almost killing me. This positive admission will helpfully go a long way to help that.

Why Brexit Scares Me as a Chronically Ill Person

Brexit is looming (maybe, unless it’s delayed) and there are many stories in the press about medication shortages and disruption to food supplies. Some of it is undoubtedly scaremongering tactics, but some of it isn’t. And we’re obviously not going to know either way until it happens.

No one wants their medication supply interrupted. At the very best, it’s an inconvenience and bothersome symptoms will come back. But for people like me, it’s literally a matter of life or death.

There is a huge difference between not having a medication which keeps you healthy and one which could lead to death. People take many medications which prevent the potential of complications leading to death, ranging from tablets for high blood pressure to ones for depression. But for some of us, that one specific medication keeps us alive and we can’t miss a dose.

For example, I have asthma. If I don’t take my inhalers, my asthma will get worse, but I probably won’t die immediately from it. In the event of this medication being unavailable, I could be really diligent about avoiding my asthma triggers, stay indoors, not do any type of exercise, avoid stress… there are lots of things I could do to prevent an attack. If I did have an asthma attack but my inhalers weren’t available, I could go to hospital where I could be given something like a saline neb which wouldn’t cure it, but would help. Or I could be given an alternative treatment only available in hospital. Or even put on oxygen or intubated. If my heart stopped, I could be resuscitated.

(Can we all just pause for a second and recognise how absolutely ludicrous that I’m even writing this post and thinking about it? Regardless of whether you voted for brexit or not, the fact this is even a potential problem is stupid.)

I also have adrenal insufficiency. If I don’t take my hydrocortisone I will die. End of story. Nothing I do will prevent this, even if I didn’t get out of bed. If I go to the hospital and they don’t have it either, I will die. There isn’t an alternative I can be given. It doesn’t matter how much you try to resuscitate me if my heart stops, without that specific drug, I will die. The same applies for other endocrine illnesses like diabetes.

I’m sensing some people are reading and are rolling their eyes at my dramaticness or thinking it’s scaremongering. Firstly, that’s not an over dramatisation, it’s fact, secondly, here’s what I know (factually):

– this is one of the drugs which has been cited by doctors as a shortage drug in the event of no deal brexit

– guidelines issued to GPs say stockpiling of these drugs isn’t necessary because they’re written by people without knowledge of how important it is to people like me (hydrocortisone is used for many things and it’s not essential for life in the majority of cases. But it is for me)

– pharmacies have already had problems getting in this drug for me as it is from various suppliers, due to nationwide shortages

– the brands of hydrocortisone I can take have been at the centre of a court case because of them cutting a secret deal and trying to outprice each other on the market. It’s been in the news.

– currently I can only take 1 brand due to the way the compound is mixed, the fact I have to take 2.5mg doses and the NHS not prescribing anything less than a 10mg tablet. In other words, all brands except one can’t be split into quarters. So I’m already really limited.

Some people might also be thinking that the worst case scenario is that there’ll be a delay at customs, so it’ll be late but available. But I don’t have the luxury of delays, because missing just one dose can kill me. Here’s why medication supplies might be interrupted:

– customs slow things down meaning medication distribution to pharmacies is slower

– once they arrive in the U.K., they have to go to the wholesaler who then distributes to pharmacies and hospitals.

– wholesalers can prioritise where they send their medications to, but they’re going to prioritise hospitals first (this has already happened). And also, remember these are businesses so their ultimate goal is to make money, not keep people alive. What would you do if you knew something was going to be in short supply? Hike the price up! And likewise for the people exporting to us. So suddenly it could be a question of who can pay for medications. Hydrocortisone already costs £90 per box. I need 3 of those per month minimum.

– pharmacies have quotas (like rations) of what they can order. So they’re not necessarily allowed to order lots of boxes of the same thing. What if some pharmacies have more demand than others?

– then there’s logistics- if a lorry has been delayed at customs, it’s then not able to make a return trip as quickly to get more deliveries. And those kind of logistics have knock on effects which can take weeks to resolve

I don’t have weeks. And also consider the following; perhaps it’s too much disaster programmes on Netflix, but I know how it goes down in a real crisis. Doctors will save the most amount of people with the fewest medications possible. Like a game of chess. I require my meds every 6 hours but, like I said, hydrocortisone is used for lots of things from allergic reactions to respiratory problems. In a lot of cases, people only require short courses of it and will resume normal life but I’ll need it long term. If you can save 7 people with a week’s worth of my drugs but sacrifice me, what would you do? Clearly you opt to treat the 7 people over one person. It’s obvious. But it’s not great for me, because without that drug, it’s a death sentence.

So yes, it might all be fine and the disruption might be minimal. But if it’s not? How would you feel if you knew that missing one dose could be fatal? And that’s just the drug which keeps me alive, I take 18 other ones each day which alleviate my otherwise debilitating symptoms. What about all of those? They won’t kill me straight away if I don’t take them, so I’m less worried. But, again, how stupid is it that I’m being forced into a position of thinking that?

Anyway, here’s what I’ve been doing about it, because I realise I might have freaked some people out and there are ways I can prepare:

– I contacted my GP to put in place a 2 month supply I can keep at home and a 6 month prescriptions order which can go to the pharmacy (this is what Addisons U.K. recommend) . 2 months at home should cover me for any supply disruptions and 6 months advance on prescriptions means that the pharmacy can order in advance which will help them with their quota- they’ve got the order from the doctor, it’s not just a vague request

– I’ve already got some backups at home just in case the GP has issues sorting this out for me. The issue being what I mentioned above in that it’s not a problem for most people not having hydrocortisone but it is for me. The GP surgery can only do what they’ve been authorised to do by the higher up people

– avoiding Brexit talk and drama where I can so I don’t get stressed out by it

– making sure I don’t have anything ‘big’ planned around that time so that I can keep as well as possible (ie leaving the house to do ‘life’ things means increasing my dose which I won’t necessarily have the luxury of doing if there are supply issues)

I’m really practical about having AI and all of it’s near-death encounters it has thrown at me, so I wouldn’t be saying this just to have a dig at people who voted leave. I’m also intelligent enough to be able to check sources of publications for reliability and fact checking. Aside from that, this is what the big charities for my illness have told us patients. I’d be stupid to ignore their advice.

And this is just me, it’s a bigger problem than that. People wouldn’t have access to cancer treatments, the flu vaccine won’t be as readily available and this year’s flu is supposed to be tough, and services which are usually stressed over winter are going to face bigger problems if people with long term health conditions don’t have access to their meds.

If I haven’t managed to convince you that there’s a reason for me to feel scared about brexit then I doubt I ever will. And the whole ‘it might get delayed’ thing doesn’t help because it just shows how incompetent our country seems to be in organising anything. But whichever way you look at it, I’d like to hope that 52% of the country wouldn’t have voted leave if they’d known that there was the potential of people dying because of politics.

I’ll leave you with this tweet:

Weight Loss: It’s Not Always About Resilience

The general consensus when doctors look at an overweight patient who’s saying ‘I’ve tried that, it didn’t work’ is that the patient is either lying, not done what they’ve been told to, or been cheating on their diet perhaps without realising it. Usually I ignore most doctors who give me a lecture on losing weight because they don’t know me and my medical history, but I saw my endo a couple of weeks ago, and he basically gave me the same lecture, despite knowing me.

The lecture always goes ‘write down everything you eat, cut out calories, don’t snack between meals, eat less fat, eat low GI foods, eat more vegetables, don’t eat processed foods, have a drink instead’. Makes sense right? To me, this is ridiculously obvious. I’ve done my research, I know this stuff. And I’ve been doing it, but it doesn’t work for me.

In actual fact, I have been losing weight. I’ve lost 1.5 stone so far. But no one seems to acknowledge this at appointments. That’s a lot of weight to lose! But it doesn’t feel like it’s good enough because I’m still fat in their eyes. And I’ve not followed any of their advice, because it doesn’t work. It’s pretty demoralising.

I was trying to explain to him that resilience isn’t my problem. If it was just a case of ‘eat less and move more’ then I’d be back to my size 8 self I was before all of this. But it isn’t that simple and I need someone to help me work out why that doesn’t work for me. Someone like a doctor! But they all just assume I’m lying or haven’t tried hard enough.

I’ve got to the stage where I think I’m verging on giving myself an eating disorder, and that’s not me being flippant. I genuinely think my mental health is going to be at even more risk if I write down everything I eat. My reasons for this are:

– if you tell me to do something, I do it. And I don’t cheat. It’s like a compulsion- I *have* to do it. Even if it makes me more ill.

– I only eat when I feel like I’m going to pass out. I have hunger pangs all day (more on that later) but I only eat when I medically need to

– I hate eating now. I don’t get enjoyment from it because I have an internal argument about whether ‘I really need to eat that’ every time I have to put something in my mouth.

– I had to carb count before and I was obsessive with it. I refused to eat over the 60g of carb I was allocated and I ended up in hospital a lot as a result

And this is what I was trying to explain to my endo. I can’t really cut out calories or eat less because I’m only eating to stop myself from going to hospital. If I try to ‘push through’ it, I end up sweating, shaking, get a headache, feel really sick, feel really dizzy, get stomach ache and get diarrhoea. Which I can’t cope with every day. His response to me saying this was ‘well what’s your blood sugar doing?’, which I said ‘it’s fine’ which made him just think I was over exaggerating and conclude that it’s a resilience thing. (actually, my blood sugar goes up when I feel like that and will keep going up to become hyper. Unless I eat and then it goes to normal)

But I know it’s not psychological (or at least not all of it). When I feel like ‘I need to eat’, I’m not actually hungry. But my body is telling me I’m hungry because I think it needs something and if I accidentally eat it, it goes away. Likewise if I take more hydrocortisone, or if I lie down, it sometimes goes away. It’s like something gets triggered hormone wise when I eat, and I feel better. Just the feeling doesn’t last long, it only stays an hour at most. Then the pangs come back. And it depends on other factors as to how much weight I lose- there are 2 weeks in the month I drop a lot in weight, the other 2 I gain or stay the same. Nothing changes diet wise, which is why I think there’s a bigger picture hormone wise going on.

I worked all this out a while ago, and I basically don’t eat meals anymore. This works a lot better and is how I’ve managed to lose weight. I only eat when I feel ill and I stop eating as soon as the feeling goes away. I’m still eating the same amount as before I reckon, but spread over the day rather than in 3 meals. And because I’m not ‘stressing’ my body out by making it ill by trying to stick to a diet which doesn’t work for me, it’s using energy better and means I actually can lose weight.

The advice I was given doesn’t work for me. But, I don’t think most patients are as disciplined as me, so he’s used to people making excuses. And to be fair, he hasn’t specifically given me that advice before and he’s my lead doctor. But because he’s my lead doctor, I felt disheartened that he wasn’t listening to me when I said ‘yes but that doesn’t work’. I weigh myself every day, I know what works and what doesn’t. Looking at his advice:

cut out calories. I did that and put on weight. Now I’m eating more calories, I’m losing weight.

don’t snack between meals. I just got rid of meals. And I snack all the time now.

eat less fat. Same as with the calories.

eat low GI foods. My body hates low GI. It has to work twice as hard to digest it, which increases the ‘I need to eat feeling’. Eating food that’s easier to digest means I need to eat less.

– Eat more vegetables. That’s pretty much all I eat anyway! I don’t eat grains or carbs

Don’t eat processed foods. Most of my food is made fresh from aforementioned vegetables

– have a drink instead. I know this anyway. It works for about 10 minutes. My body isn’t stupid and knows when I try to trick it!

I came away from that appointment pretty upset and angry that it just gives my GP more fuel to berate me with. Then I sat down and thought about it. I have been losing weight. That’s the important thing. It might not be in the way they’re telling me or as quickly as they’d like, but I have been losing weight. I wasn’t before when I followed their advice and I was in hospital a lot. Doctors don’t know everything. I’m losing weight and I’m not in hospital as much. My endo admits I’m a tricky, complex case, so why does he think I’d suddenly be straight forward when it comes to losing weight?

So no, I won’t be writing down everything I’m eating and I won’t be following his advice. I’m going to continue to eat when I need to and choosing foods that I think my body needs- I discovered there’s a word for this, it’s called intuitive eating. Somehow my body has kept me alive until now and I’m going to keep trusting it. And, in case I was in any doubt, I’ve lost another kilo since that appointment 10 days ago.

Next time I see him, I’ll say I did what he said and it didn’t work, and tell him what I’ve been doing instead. If doctors are expecting me to lie, then I may as well live up to their expectations! Except my lies are to prove that their advice doesn’t work in my case- I’ve been there and tried it, it didn’t work. If they listened to me in the first place, I perhaps wouldn’t need to resort to tactics to get the healthcare tailored to me that I need.

(I still love my endo. Unless we have a similar conversation next time!)