How I cost the NHS a lot of money (despite being a good patient)

I’m under no illusion as to how much my ‘free’ healthcare costs in the real world. And I’m not even talking about actual treatment, I also mean all the hidden costs to the NHS people are unaware of. I’ve lived in France and experienced how insurance based healthcare works (to an extent) and had the unpleasant feeling of not knowing if my insurance covered an ambulance call out off the top of my head, and could I afford to pay for it out of pocket if it didn’t.

I’m a model patient. I take all my meds, I turn up to all my appointments, do all my physio… if anyone knows how to save the NHS money and use it properly it’s me. But it’s chronically underfunded and isn’t actually equipped to deal with long term chronically sick people because the money it’s given is mostly used to put out metaphoric fires rather than long term provision. Here’s how I ended up costing the NHS a lot of money a couple of weeks ago, despite everyone’s best efforts.

I had a run in with a post office employee, and the counter is based in my pharmacy. I needed an ambulance so I dialled 999 and got put on hold because the ambulance service was extremely busy. One of the questions is about immediate threat to life, so I said I wasn’t immediately dying and not to use the red flag which I have against my name- it gives me a fast call out because of my medical condition. In the meantime, the pharmacist was the only medical person onsite so he had to stop what he was doing to look after me. Which is fine, but obviously him not doing his actual job has a knock on effect and this post is all about how tiny ripples end up costing the NHS.

The ambulance took a long time because it was so busy, so after 40 minutes and because I was getting worse, I rang 999 again and asked them to activate my red flag so I could get an ambulance there on blue lights. But the ambulance they were already sending was the nearest one, so they just upgraded the call from amber to red. In doing so, it set off the blue lights while stuck in road works traffic, which freaked out a driver who ended up having a car accident by driving into a skip lorry. So the ambulance had to stop and make sure everyone was ok before carrying onto me. It was only a couple of minutes but because that happened, they didn’t get to me in the allocated time for a blue light call out so would have had to pay a fine. Big cost number 1.

We got to hospital and a&e was also backed up. There’s nearly always people in the corridors waiting but it was particularly bad today. I got given more treatment by a consultant and then she said I could go to MDU/GPAU to be seen by the medical doctors there. This is a day ward where GPs can refer patients who need hospital treatment and/or a decision about whether or not they need to be fully admitted. This made sense because I didn’t need emergency intervention anymore, but I did need hospital intervention and possible admission.

However, they were also really busy. One of the problems with this ward is there is usually only one senior doctor on and lots of junior doctors. Who normally don’t have a clue what to do with me, and in any case, they’re not actually allowed to make decisions about complex patients like me. The staff on this day weren’t good at working as part of a team, there were a lot of temporary staff or staff who’d clearly been drafted in last minute to cover the hecticness so nothing was happening very quickly. It’s hard to be efficient when you don’t know who anyone is or where things are kept.

But the nature of my condition means I have to have certain meds at certain times, and because I was in hospital, I needed a doctor to decide whether I needed to be on IV or oral doses and write this up. Which meant a lot of arguing with the nurses to get the senior doctor down to decide so that we could get the drugs written up. In making him come and see me, this obviously upset the already fragile ecosystem of the junior doctors which wasn’t working anyway and had a knock on effect.

Senior doctor decided I needed a chest x ray. But by now, it was classed as out of hours, so sending me for a chest x ray from this ward would cost more than if I’d had it in normal hours. Which would have been fine, except for the fact it took 4 hours longer than everyone thought it would. Had I been sent for the x ray from a&e it would have worked out cheaper. In a lot of cases, they would normally discharge someone and tell them to come back the following day for their x ray if that was the only bit of the puzzle we needed. But that’s not possible with cases like mine, which meant I needed admitting until the chest x ray was done.

But there weren’t any beds anywhere in the hospital. Because it’s a medical decisions unit, the ward closed at 2am, meaning that there weren’t any staff allocated to it beyond that time. However, there were 3 of us needing beds and at 2am, the ward would ‘breach’. This basically means go over the target time and everyone gets fined. Plus there’d need to be staff to look after us so either the hospital pays them overtime or they stay on beyond the end of their shift and don’t get paid.

In my case, because I came from a&e, I would I also cause a breach at 12 hours. Which was about 2.30 am. I could hear the ward manager getting more stressed about it as she tried to find me a bed. Here’s what she tried to do:

– no beds on assessment wards so she tried other random wards

– no beds on those so they had to open another ward

– they’d already converted some wards elsewhere in the hospital and they were full so they had to convert a day ward into a night ward

– but day wards have stretchers not beds, so she had to wait for people to physically bring her beds

– then she had to get the senior doctor to sign off on staffing. But he was the medic on call so was elsewhere

– nursing staff had to be found to staff the ward. They took time to arrive

She didn’t manage to get through all that before I breached and they would have got fined. But by now they’d already got fined so she carried on sorting it.

In the end, I ended up on a ward from 3am-7am by myself, with my own nursing/healthcare staff. I’m not even joking. There was me on a ward full of empty beds and 2 nurses and a healthcare. All because I needed an x ray and they didn’t want to pay for out of hours service.

At 7am, 2 other patients joined me from a&e. But, remember this ward is a GP admissions day ward, so they had to convert it back for 8am. So they had to put us in isolation rooms so we had somewhere to be while waiting for ward round. Not a big deal but that’s still cleaning, porter and extra nursing staff that have to do their jobs for this to happen.

Then we obviously needed feeding. I’d told people about my medical diet but the kitchen needs orders in for ward meals the day before and I hadn’t been admitted then. Which means the ward has to ‘buy’ my meal from the canteen, which is another expense, not to mention the member of clinical staff they sent to go get it.

I got my chest x ray, the consultant reviewed me and I was discharged. Had they done the x ray the night before, it would have worked out cheaper. Instead my overnight stay would have cost thousands. The consultant was livid.

The sad thing is, it was a pretty stressful admission for me too, so it’s not like I received amazing care and the staff bore the brunt of it in the background. All of us had a terrible night. The system is broken if staff can’t do right by their patients and if patients are receiving suboptimal care. Yeah, I was kept alive but I didn’t have a place to sleep until 3am, I had to argue for my basic meds, I was herded around like cattle, I didn’t get given a meal from 15.00 one day til 8am the next. Add in an orange jumpsuit and I may as well have been in some kind of prison.

Why’s it like this? Because people are putting out fires rather than thinking about what happens further down the line. The fines they’d have had to have paid on me in that 24 hours would have been thousands. And they were just trying to stop one fine after another. What else can you do? The problem is bigger than the individual hospital. Staff can only do what they can with what’s in front of them at the time.

Add all the fines/costs to the treatment I did actually have and it works out very expensive:

– ambulance

– a&e assessment and intervention – IV HC and fluids, pain relief, blood tests, consultant

– MDU assessment and consultant, medications

– chest X-ray

But I recognise that there are things I can do to help:

– I had my own meds with me so they didn’t have to get pharmacy to prescribe them/buy them in

– I had some of my own food with me so I could have an evening meal

– I have a ready packed hospital bag so I didn’t need to be given pyjamas and personal hygiene items

But I shouldn’t have to do that. Staff shouldn’t be working past the end of their shift because there’s no one to look after patients otherwise. There are so many things which shouldn’t happen but do.

You can say proudly that we have one of the best healthcare systems in the world, the staff are amazing, it’s free for all… but it won’t be free and it won’t be one of the best if things keep going the way they’ve been going. You might also be privileged enough to be able to say that you don’t need to use the NHS regularly and it’s always wonderful when you do. The system works for emergency care or for things which are curable eg an infection needing antibiotics. It doesn’t work for long term use. It’s a victim of its success- people are surviving when they would have died in the past and there isn’t provision in place for this.

With this in mind, remember, the only thing guaranteed in life is that our health will fail and we will all die. Anyone can become ill or disabled, it’s just a matter of when. Please remember this when voting in this week’s general election!!

Seeing a rheumatologist

A couple of weeks ago, I went to see a consultant rheumatologist. It’s been about 15 months of various people saying ‘I don’t know what to do, I’ll refer you to…’ about the fact that I keep getting stress fractures but finally I was vaguely in the right place. I’m still not 100% sure what they do, but the gist is rheumatologists deal with bones, connective tissues, muscles etc. It’s less about the actual physical bones, like you’d see an orthopaedic doctor for, more to do with the way the whole skeletal/muscular system holding us together works.

I went to the appointment knowing that:

– I keep getting stress fractures which are slow to heal because my bone density is not very good

– the majority of my bones are classed as osteopenia and a few of them are osteoporosis. Osteopenia is like pre osteoporosis.

– having this diagnosis isn’t a great one at my age

– steroids make your bones weaker

– you can’t replenish bone density much beyond the age of 30 (in general, for everyone), you can only really maintain what you’ve got. So diet and supplements only do so much

– it’s unusual for a person my age to have the bone density scan results I have

– there are bone treatments available but no one is very keen on putting me on any.

The main reason for seeing this consultant was because while I’ve only stress fractured my hands and feet so far *touch wood*, I’ve done it by doing really simple things like standing up. So if I can stress fracture my foot that easily, who’s to say I won’t stress fracture my spine or hip by getting out of bed? Which would be very bad. And as part of the slow healing process, I have to take extra steroids, which will weaken my bones further. So the idea was, see how we can keep the bone density I’ve currently got and look at more specialised bone treatments.

But, like with everything, it’s not that simple. I’d already worked out from my reading that the reason why everyone was very reluctant to prescribe some pretty aggressive treatments is because they’re largely untested in people my age. Most of them are only given to elderly people who die anyway before the long term implications on things like heart and liver function and fertility can be seen. And, even if they do live long enough, old people get those problems anyway. So how do you tell if it’s from the bone treatment or just because everything else is failing? Everyone has to die of something. In other words, aggressive bone treatments only have to work for those taking them for a short period of time, in the majority of cases. The other option is things like joint replacements, but routine surgery for me is still risky so we have to try to avoid it.

The consultant confirmed this but he also added something I hadn’t come across in my research. I fit the criteria for the treatment but I’m high risk because of my age. The after affects of the treatment last for 7 years after you stop taking it. So whatever we decided would impact on my life for at least the next 7 years. Imagine having to think about what you want to do for the next 7 years. What if it makes my organs fail? What if I’m allergic to it and end up with constant near anaphylaxis for 7 years? He actually laughed and rubbed his face and said he doesn’t know what to do, that I’m rare for even the people he sees and he’s going to have to refer me to a ‘super rheumatologist’ in the region and maybe a national osteoporosis clinic. Because if we got it wrong ‘we’d all be in a lot of trouble’ (were his exact words).

Soooo, not only do I already have various uncommon illnesses, but the treatment for those which keeps me alive is giving me rare complications that no one really knows what to do with. Fun times!

He said he’d order some bloods to cover all bases, to make sure there aren’t any other reasons behind my low bone density. This is where it got interesting. I looked at the ones he’d ordered, and they were mostly endocrine work ups, which I assumed the various endos I’ve had would have checked out before. Wrong. Because I’d had a bit of a roundabout way of getting diagnosed, a lot of the diagnosis was based on assumption of what came before and trying to save the NHS money by not ordering complex tests, ironically costing it more in the long run. It’s only been recently where I’ve insisted they actually do the tests to confirm these diagnoses properly because I’ve wanted to be informed about my treatment and life options that we’ve started getting a bigger picture. And, to be blunt, because I know how it works a lot better than most of my doctors.

One of the tests the rheumatologist ordered was parathyroid hormone, which came back as ‘slightly elevated’. I didn’t think much of it because it doesn’t necessarily mean an awful lot if it’s technically still in range, but it’s not very often that I actually get test results coming back abnormal so I did some googling. Parathyroid hormone controls how much calcium is kept in your bones and how much is transferred into your blood. It forms part of a feedback loop with calcium and phosphate (among other things). Too little calcium in your bones makes your bones weak. A couple of months ago, I was in a&e in Cumbria and asked them to do an endocrine work up (for ‘completion’, as doctors say to me) and the doctor there said my phosphate was undetectable. I didn’t really think much of that either, except for increasing phosphate in my diet, until I read about the interplay with parathyroid function. A bit more time on google says that low phosphate and high parathyroid hormone can be a sign of Hyperparathyroidism, which, if you look at the symptoms, I have a lot of. The symptoms are a bit vague though, and nearly all of them can be attributed to another one of my many illnesses. However, the one thing that has been stumping my doctors regarding bone density is that the scan I had when I first started steroids 5 years ago and the one I had last year are virtually identical. Which means that unless taking steroids depleted my bone density in the first six months and there’s been no decline since, it’s possible that I already had osteoporosis and osteopenia bones before.

Of course, it could be one big coincidence and I don’t have a parathyroid hormone problem. But there are still a lot of coincidences for me to not get it looked into. And, in a very backwards way, it would almost be better for me to have a PTH problem which is treatable, as opposed to my bone problems being down to my steroids, which I have no choice about and would therefore just get progressively worse.

Unfortunately, I’m currently joining the dots between random doctors in 3 different counties having mentioned to me in passing that the separate components of this feedback loop are a bit skewed. Good job I was paying attention! They don’t know what tests each other has done and they can’t see the results of any tests which have been done. So we need a full set of results in one place to be able to see if it is just a coincidence or if there’s something in it. I’ve written to the people involved, now just waiting for the painfully slow admin to be done!

How a trip to the post office ended in hospital

I’m pretty annoyed about this, because I was doing reasonably well beforehand. I’d been bragging about how I’d got a cold and hadn’t ended up in hospital! That never happens! And I’d been managing well on my baseline at the same time, which also never happens. I was feeling like all my hard work was paying off.

But that kind of goes to show how volatile adrenal insufficiency is. Because I’d had a cold, I’d been doing my BP, HR, temperature and blood sugar readings every day properly, just to be sure. Normally I only do them if I feel weird. So I knew in the morning I was fine numbers wise. I needed to go the post office counter in the pharmacy so I went over the road on my scooter because I didn’t want to push my luck too much- I had a cold after all, I didn’t need to exacerbate things by overdoing it.

Then it started to go wrong. The post office employee was decidedly not friendly and was really rude from the get go. Long story short, he expected me to be a mind reader and know how he specifically wanted something doing, which I agreed to do for him next time, and asked him politely to do it the other way this time. Instead of just agreeing back, he kept lecturing me about it, wouldn’t give me my post back so I could do what he wanted and try again, but equally wouldn’t let me pay for it. He got progressively more and more rude and shouted at me until other staff intervened and he still wouldn’t do it.

Basically, he was just being awkward. My point was a more polite version of ‘give me my post back, or let me pay for it, but either way stop going on about it’. Annoying, right? The normal human body sets off a series of reactions when you start to get irritated or angry. Your fight or flight system gets triggered, flooding your system with many chemicals including cortisol and adrenaline, which makes your heart rate increase and your senses heighten. You might feel a bit shaky or wired up. In doing so, your body starts to divert energy away from ‘background’ stuff like digesting your food or fighting off your cold and puts it into gearing up for a fight. Or because my body doesn’t function very well to start with, my background things were standing up, having a conversation and trying to avoid my temperature going up because I was wearing a coat indoors.

I started sweating and shaking and feeling like I was going to pass out and kept saying I needed him to finish because I was struggling. I rested my arms and my head on the counter and he still ploughed on with his rant. Eventually I couldn’t cope anymore so I walked over to the chairs, sat down and promptly burst into tears. Which might seem like an overreaction, but by now I had the same amount of hormones zipping around me uncontrollably as a woman in active labour has. And it was either cry or pass out. Still not getting the point, he kept shouting at me because I hadn’t paid and I kept saying he needed to leave me alone.

I use the pharmacy as a place to do my rehab and physio. Sometimes I walk, sit and rest, sometimes I scooter, sit and rest. They all know I do that. It means I don’t isolate myself, it helps my physical health and it’s a ‘safe’ place to do it since people in there know me and can help me medically if it all goes wrong.

Which it did! One of the pharmacists stepped in, told him to back off and sat with me while I tried taking oral hydrocortisone. It didn’t do a lot. We went into a treatment room and checked my blood pressure which was ridiculously high so I took some more. We waited a bit longer and my BP and heart rate were still high so I rang 999 and injected. Nothing I did made it go down.

The paramedics arrived and we went to hospital. After another 200mg of IV HC, things started going back down to a bit more normal. But I was kept in overnight to make sure I didn’t have a lurking infection and because things weren’t quite right even if they’d improved.

It’s a week later and I’m still feeling the aftermath of this. All because some bloke was having a bad day and wanted to put his irritation onto me. I had 400mg HC total which I shouldn’t have needed, I had to spend a night in hospital and got little sleep, I have to taper my oral dose… But also, from a mental point of view, the pharmacy isn’t a ‘safe’ place anymore for me to work on my health. It took me a week to go back there and I was so anxious about it. But who wouldn’t be, after being berated in public, shouted at for doing nothing wrong and crying in public? Not to mention calling an ambulance, dangerously high blood pressure and a trip to hospital.

It’s annoying because I can do everything in my power to keep on top of my illness but something someone else does can ruin all my hard work in seconds. I mean, I could just stay at home in my own bubble all the time, but that’s not living! Even without my medical condition, his behaviour was out of line though. And that’s what I find most frustrating about it. I’m really good at managing my illness and ‘predicting’ what might go wrong and mitigating against that. But there’s absolutely no way that I could have predicted going to the post office, doing something I’ve been doing most days for months with the same employee was going to end in blue lights and hospital.

How could it have ended better for me? If he’d not been shouting at me, which I don’t think is ever ok in customer roles anyway. If he’d listened to me when I’d said I was struggling. If he’d controlled his stress response even a fraction so as to avoid triggering my broken one into a meltdown. All things which were in his power to do, had he shown any kind of level of human compassion. I can do everything I can to keep myself as healthy as I can. But I can’t do anything about other people being idiots.

Oh, and if you were wondering, I did what the grumpy post office man told me to do and 2 of his colleagues have since told me that my original way was fine and that the grumpy man was just making a deal out of nothing. But you know, it’s not like his strop was damaging for my health or anything *rolls eyes*

World Prematurity Day

Today is world prematurity day, marking babies who are born premature. I was born premature by a month, which isn’t that big a deal in terms of today’s medicine. But in the 80s when technology wasn’t great, it was considered a lot early. You either lived or you didn’t, there wasn’t an awful lot they could do!

Attitudes towards how premature babies are treated have changed drastically too. Now, it’s recognised that babies who spend time in the NICU (and their parents) are likely to develop some kind of PTSD. Think about the conditions: constant noise, constant light, lack of sleep, all of your actions being out of your hands, quite often there aren’t any windows so you have no concept of time, near death experiences… it’s essentially similar to stress conditions used in interrogations. So steps are taken to minimise this. Bonding between parents and babies is actively encouraged, and caring for your baby by doing ‘normal’ things (nappy changes, feeds where possible) is seen as important. Whereas when I was born, my parents were only allowed to visit me during strict visiting hours and not allowed to do a lot of tasks. In fact, my parents were miles away from where I was in hospital, whereas now, lots of charities provide accommodation or transport to parents so they can be minutes away from their child in hospital, rather than potentially hours.

Science has now proved that you develop a lot of your processes and emotional responses to things early on in life. In the 80s, the mentality was very much ‘they’re a baby, they won’t remember anything’, but now there are studies which say that things like sleep cycles and emotional responses to being cared for and made to feel safe are established in the first couple of months. Lots of NICUs support schemes by charities such as giving preemies an octopus to help babies feel less stressed out by having wires attached to them and giving them something tactile to play with instead of pulling their tubes (they can safely pull the octopus tentacles instead). Or bonding squares where the mum wears one for a while and passes it to the baby in the incubator so the baby feels their mum is nearby from the scent of the square. Lights are turned down and quiet times implemented at certain times of day so that the babies can try to develop some kind of circadian rhythm. Where possible, tube fed babies are given breast milk alongside formula.

In general, there’s been a shift in attitudes about the way people experience birth which just didn’t exist until recently. Obviously giving birth is a traumatic experience for everyone involved, but at least as a parent you’re slightly prepared for it and know it’s coming! Babies are pretty abruptly transitioned from one safe environment inside the mother to a strange and alien one outside. And if you’re born prematurely, you’re separated from the safe person and then are poked and prodded and subject to medical procedures. As adults, some people can’t cope with even the slightest of medical interventions, so imagine what it feels like as a baby!

There have always been things that my mum and I have put down to me being a premature baby and the way I was treated during my time in hospital. I’ve also had conversations about it with health care professionals and counsellors. Some things include:

– my physio noticed that my ‘weaknesses’ or problems tend to be on my left side and said that they sometimes see this with babies born via forceps. I never had problems that I remember as a child, it’s only become obvious as an adult

– some of my current conditions are directly linked to having been born early and not having developed fully. Asthma is the big one here for me. Technology was massively limited in the 80s in comparison to now, so it would be interesting to see how my treatment would change with the knowledge we have now compared with how doctors had to treat me back then.

– I absolutely hate being left by people. Rationally, I’m fine with it. But whenever anyone says bye to me after visiting me, even if I’m seeing them again soon, I always have this feeling that I’m almost being abandoned by them. I don’t mean like if my husband nips to tesco, it’s more people I don’t see regularly. It’s particularly bad at night time or later in the day, which kind of makes sense if my parents had to leave me every night.

– if I can’t sleep, I turn all the lights on and put some kind of tv programme on. My mum and counsellor reckon this stems from being on a busy ward where lights were shone on me 24/7 and it was very noisy.

– I don’t think I’ve ever had a full night’s sleep and slept through the night. I wasn’t given the chance to as a preemie, so it’s possible that’s why I don’t now.

– I’m fiercely independent. I used to hate asking for help or being given help for anything, I’m a bit better at it now. But, if you’re not stubborn as a premature baby, you don’t survive! From the word go, you have to work hard to do basic things like keeping alive, and in the 80s, you weren’t given a lot of help! If I can do something myself, I do, because that’s what I was inadvertently taught early on.

– I’m a very practical person. Because I wasn’t allowed to have much physical contact with my parents early on, I kind of learnt to ‘get on with things’ myself, and that’s the attitude I have now to most situations.

The subconscious is a hugely powerful thing which we still don’t know much about. Obviously I don’t remember my time in hospital as a baby, but my body and parts of my mind do. There’s probably a whole bunch of other stuff which we haven’t even come across yet. Being born prematurely has so many more wider implications than just physical health aspects, but it’s only now that these are being studied and recognised. It’s pretty fascinating if you think about it!

Medicine has progressed so much and it’s incredible what doctors can do, in some cases before the baby’s even born. But premature babies are a little bit special because they really do want to be alive. So much so, they make an early appearance 😉

High Cholesterol

There are a few fancy medical words which make it a diagnosis rather than just something people have, but they’re long winded. This is the latest thing that seems to have cropped up. Having high cholesterol is something normally considered to be age related, but for some reason mine is super high. Even with my very healthy (and cholesterol friendly) diet, it’s still crazily high.

Cholesterol is a sticky, waxy thing in your blood which your body uses to make new cells. So you need a bit of it, but too much of the bad stuff just clogs everything up and puts you at risk of things like heart disease and stroke. In a lot of cases, changes to lifestyle such as eating lower fats and less processed foods and exercising more reduces cholesterol. Or giving up smoking and alcohol. Some people might have to take statins, a drug which reduces cholesterol. However, like with every other bloody thing at the moment, it’s not that simple for me to do! Here’s why:

– general energy for existing is over exertion for me so I can’t exercise much, if at all. This makes me high risk

– taking statins would reduce my cholesterol level but it would still be above the threshold for an acceptable level.

– I’ve probably got some genetic trait because statins and my existing diet should drastically help lower cholesterol. But it’s not.

– I’ve been put on a fancy new medication that helps absorb it and isn’t widely available here. But it’s new so no one knows what will happen side effects wise long term.

– I used to take statins for my cholesterol but then I developed non alcoholic fatty liver disease. Statins increase the fat in your liver so I was taken off them to avoid doing permanent damage to my liver. Now that my liver is slightly less grumpy, we can look at cholesterol again. But at some point I imagine my liver will get angry again so I might have to stop them. It’s a balancing act.

– I already fulfil a lot of the high risk criteria for stroke and heart disease before we add cholesterol into the mix: I’m overweight, my blood pressure is high even on meds, I’m tachycardic a lot, I’m sedentary, I have many health conditions, there’s a history in the family, I’m insulin resistant… Stroke and heart disease are seen by many as ‘old’ people diseases but anyone can have a stroke or heart attack if they’re high risk.

– I take steroids every day. They keep me alive but they’re bad for everything else

None of that sounds particularly cheerful. It’s because it’s not. My body is acting like a 70 year olds would. In other words, I have all of the ‘normal’ risks a 70 year old would have but I’m in my early 30s. Except I’ve hardly had a rock n roll lifestyle to justify having them at such a young age.

So what *is* positive? I’ve got a few ‘good’ things going for me

– I don’t smoke or drink alcohol

– I’m losing weight albeit slowly

– my diet is as close to perfect as you can possibly get. My endo said it was excellent, in fact

– I’m really disciplined so I take all my meds, do all my physio and stick to my diet

– my endo is allowed to prescribe me this new drug because he’s a leading researcher in it. The risks might be unknown, but as my husband said, ‘it’s better than potential immediate death though’. And I trust my endo.

– I know how to manage my other conditions really well which means I know I’m doing everything I can to minimise those putting me at risk (ie less things for my body to try to manage at once, which would increase stroke risk)

– I’m pretty practical as a person so while it’s totally depressing, not fair, shouldn’t be happening etc I also know that I can’t do anything about it and getting stressed/bitter about it will only make things a million times worse.

– knowledge is power in this case. Knowing we have to keep an eye on cholesterol is a good thing because it means we can (hopefully) do something about it

So fingers crossed we can get my cholesterol level down!

5th Wedding Anniversary

We’ve been married 5 years this week. Where on earth have the last 5 years gone? A lot has happened in 5 years. We went on an awesome honeymoon. We’ve got 2 nieces and a nephew. We both got promotions. Friends and relatives got married.

This is where I’m supposed to say ‘and they’ve been the most AMAZING 5 years ever, spending it with my AMAZING husband who is the most WONDERFUL human being ever.’

I could say that. But it would be a lie. In that same 5 years, some of our relatives died. We lost an income when I lost my career. We had to put ‘the in sickness and in health’ bit of our vows to the test straight away, when I got diagnosed with lots of illnesses starting from the week after we got married.

You get the idea. Plus it’s depressing going over all the horrible stuff! We’re all sold the idea that marriage is some kind of big, romantic adventure where you get to do an insta photo of the two of you looking ridiculously skinny and tanned with a perfect sunset behind you with #livingmybestlife. (What does that even mean?). But no one ever writes films or novels or shows the Instagram outtakes of what happens after the wedding and honeymoon are over. Not unless they’re ones which end up with someone being buried under the patio!

Then you kind of sit and look at each other and think ‘now what?’. What do you do when you’ve ‘done’ the wedding, the honeymoon, the promotions in your career, and bought a house? That’s when most people say ‘let’s have kids! Because that’s at least 18 years sorted out!’

Life doesn’t ever work out as planned. No one has a clue what they’re doing or how (or when) it’s going to end. I sometimes feel that sometimes people sail through life without any major issues- they have it all and they didn’t even break a sweat. Meanwhile we’re running a marathon and not even keeping up.

Well, time will tell. We’ve had a hell of a lot of obstacles thrown into our 5 years that most people won’t even experience in their lifetime. That marathon is starting to feel like a steeple chase. But we’re still married. It’s easy to be a fair weather spouse when everything is going well and you get what you want. But what happens when you haven’t got anything to brag about on social media? Or you’ve got your 2.1 children and it’s still not the ideal family life you pictured (another Hollywood myth)?

You could still act like everything was fine and say ‘my husband has been my rock through all of this, I couldn’t have done it without him’. But that would also be a lie. Because no one, not even saints, works through a rubbish situation and doesn’t wish they’d rather be somewhere else. A remote island with unlimited food and crochet would be my choice. Has my husband been supportive the whole time I’ve been ill? Nope. Do I wish he was? Hell yes. Is it fair to expect perfection if I’m not perfect either? No. Realistically, could I have got through the last 5 years without him. Yes, I’d have had to have found a way. But would I have *wanted* to do it without him? No. Could he have survived the last 5 years without me? No. He’d never be able to find anything and would run out of clean pants and socks every week! 😉

And that’s what marriage is about. Choosing to be with someone even though the happy ending romcom ended a long time ago. Being individual enough that you can survive without the other person, but you want someone to share those things with. Recognising that life would probably have ended up the same way if you weren’t together, but at least this way you’ve got someone to vent at/cry at/get drunk with/share dominos with when it all goes horribly wrong and to jump around with/get drunk with/share dominos with when it goes right. I’d probably still be ill. He’d probably still be having irrational and repetitive rants about pot holes and having to hang the washing up. We’d both still be watching tv while playing on our phones most evenings. But this way we do it with a bit of company. And sharing the highs make the lows manageable.

So, what now? Pass. I wouldn’t say no to a holiday, we haven’t had one since our honeymoon. But besides that, who knows? I haven’t even decided what I’m going to watch on Netflix once I’ve finished writing this, never mind what the next 5 years of marriage has in store. Things have a way of working themselves out. So even if it’s not Instagram photo worthy, I’m sure we’ll make the most of it.

Gastro Issues: Update and Intolerances

In August, I wrote this blog about the chronic, daily gastro issues I was having and how I was at a bit of a dead end working out what was going on. I asked people to share it on social media and I had an amazing response- thank you so much to everyone who took the time to read it or comment on it. I’m not very quick at sifting through information but I read through links, journals, and some books people suggested, as well as watching some documentaries recommended by others. I also talked to some other people through my blog, email and social media and I learnt a lot from their experiences too! So I thought I’d write an update to explain where I’m at with it at the moment.

Firstly, I don’t have daily diarrhoea anymore! I still get it, but nowhere near as bad. I can live with that! Although I haven’t been on my baseline of steroids for ages either so it could come back. My issues are far from cured though, so if reading this makes anyone think of anything, please let me know!

I’d kind of dismissed the idea that I had food intolerances I hadn’t worked out yet – I’d already cut out gluten, chicken, pork and a couple of other random things based on an intolerance test and my own experiments. But after reading some of the articles and books people suggested, I realised that allergies and intolerances are very complicated things. For one thing, you can be intolerant to something and not have gastric issues, it can manifest as pain, skin conditions, inflammation… You can also be intolerant to something slightly and not even realise it and a test won’t pick that up. But the gut, well the whole digestive system, is seriously undervalued, I’ve learnt, in that it’s constantly sifting through stuff you eat and converting it and sending it to relevant bits of the body. It’s gross, but very clever!

So if you think about how much ‘time is spent’ with the food in terms of contact hours, the gut can spend up to a day ‘touching’ something. Which if you had a skin allergy to touching peanuts, you’d see the skin respond straight away. Hold that peanut there for 24 hours and the person would be really ill, even if they were only ‘a bit’ intolerant. So you can be just a bit intolerant to something but because that thing has to travel miles in your gut, that’s a lot of contact time.

I’d not taken into account any further intolerances or allergies to things I was eating because I was focusing too much on the gastric symptoms. I can usually feel while I’m eating something if it’s going to come straight back out, which doctors told me was more psychological than anything else because the body isn’t supposed to work that fast. And I’d done an intolerance test and cut those out and sometimes I could eat stuff absolutely fine and sometimes I’d have gastric issues. It seemed random. And I also did some carefully controlled experiments where I ate the exact same thing, in precise quantities, at the same time every day and some days I’d be fine and some days I wouldn’t. If it was an intolerance to food, then it would do it every time, surely?

The gastro doctor said that I have IBS, which I probably do. But something still wasn’t sitting right with it being that by itself. I’ve been telling doctors for about 18 months that it doesn’t always feel like IBS or a response to something I’ve eaten. Sometimes it does, but some things definitely make it worse which aren’t linked to what I’ve eaten eg climbing stairs or having a shower would make it worse. Lying down improved it. I kept saying I thought it was linked to my heart rate or endocrine system somehow because it tended to coincide with when I felt low cortisol-y. And then there was also that cardiologist I saw who said he thought my high heart rate was in response to something else going on that was unmanaged, which kind of fitted with what I’d been saying. There’s something else going on that everyone is missing. Plus it would improve fast with extra steroids. When I told the doctors that on a week long hospital admission, they started looking into inflammatory bowel diseases like Crohn’s, but many invasive scans and tests later, they didn’t find anything. But it was still all a bit weird and everyone was a bit stuck.

I’d always assumed that I didn’t have autoimmune causes behind my adrenal insufficiency. Because that’s what my doctors told me and I have a pretty good immune system. However, a bit of research and going back through my test results, no one has actually tested it, they just made the assumption, and having a good immune system doesn’t mean you don’t have something autoimmune. And my doctors have been very wrong on many occasions. I don’t have any allergies which give me anaphylaxis, but I *have* had some strange reactions to things. I had a seizure once when taking prescribed medication. I get regular rashes for no reason, my asthma gets set off by things that other people can’t feel or smell in the air at all and I’m in constant pain and itch permanently unless I take antihistamines all year round. All of which could be because my body is responding to an allergen. I’d already spent the last year working out which foods made my heart rate increase, or gave me a headache or set off my reactive hypoglycaemia. But because I’d always thought that allergy meant skin rash or anaphylaxis and intolerance meant upset stomach, I hadn’t associated these symptoms with allergies or intolerances, I just thought it was another example of my body being weird.

Coincidentally, if you look at extreme allergy disorders which do have anaphylaxis (eg MCAS), I actually already take most of the medications recommended. I wasn’t put on them all at the same time, but over the years they’ve been added in, usually to treat my asthma. I clearly don’t have severe allergies to anything, but what if I do have many different little allergies presenting in slightly different ways?

But I’d had extensive allergy testing at the brittle asthma clinic. And I’d been tested for ceoliacs and other things and not an awful lot had come up. But then I read that allergy testing is a bit sketchy anyway and I know from experience I have lots of blood work that says I’m ‘fine’ and then later on we discover it really wasn’t fine. I kind of shelved it for a while until two things happened in one week. The first thing blew my mind slightly. A lady I’d found through Twitter told me about how she’d read a case where a girl was allergic to a VOC and hadn’t realised. That VOC was used in her hairspray and also in the process of freeze drying peas. So she could eat fresh peas fine, but frozen peas were a problem. And she vomited after using hairspray. But cut out the VOC and her symptoms improved. How on Earth she worked that out I don’t know, it really sounded like an episode of House. I also watched a programme called Diagnosis on Netflix where a girl reached out globally for input via social media because she had debilitating symptoms which hospitalised her but no one could figure it out. Turns out she had a rare metabolic disorder where her body doesn’t produce 1 tiny enzyme and that means it can’t break down fat properly. So all she had to do was eat more sugar and less fat and her symptoms improved. It seems simple and obvious when you know, but you have to know what you’re looking for.

This got me thinking. I’ve got reactive hypoglycaemia and it gets triggered by foods that should be ‘safe’. I feel hungry all the time, but I decided a while ago that I’m not actually hungry, my body tells me it’s hungry so that I keep eating because it’s lacking something and it wants me to accidentally eat the thing it wants. Maybe I needed to revisit the food thing more carefully, but not just what I was eating, *how* it’s prepared. And also think about any environmental things that I might react to.

In seeing me and the lady on twitter talk about random intolerances/allergies, another person, who also has adrenal insufficiency, said that they’d had lots of issues eating some foods when they were on oral hydrocortisone, but now they were on the pump and coverage was more consistent, they could actually eat some stuff they were intolerant to. So being on a ‘better’ level of steroids means intolerances improve? Which would make sense with me because I said all along that steroids improved my symptoms really fast.

But things still weren’t matching up. And I had no idea where to start. Then I had a bit of a brainwave when I was brushing my teeth one night. I know I’m intolerant to wheat, I’ve got a test result that says that and I felt better since cutting it out. BUT whenever I felt terrible, my go to food was carbs with wheat, but salt and vinegar pringles specifically. Which have a lot of wheat in. However, I always felt better almost immediately as soon as I started eating them. Likewise if I ate bread. This was one of the things that doctors said ‘couldn’t happen’ even though I could back it up with my blood sugar changing 2-3 points in the space of minutes- they just said my metre was dodgy. But I’m intolerant to wheat.

So I tried to work out what happens chemically when you’re intolerant to something but not in anaphylaxis. And would anything that happened there be able to make me feel better temporarily, and change my symptoms and blood sugar fast? Do you make adrenaline? A bit more research said yes, you do. Whenever you make adrenaline, your body’s supposed to back it up with cortisol, which I obviously don’t. So what if eating something I’m intolerant to makes a whole load of adrenaline, which *does* have very fast reactions on things like heart rate and blood sugar, which makes me feel better in the short term but later on causes me problems when I don’t have the cortisol to back it up? Because then I’d be in a cycle of eating something bad for me, my body thinking it’s being poisoned, making lots of adrenaline, not making the cortisol, so I get lots of low cortisol symptoms and then end up eating the thing that makes me feel ‘better’, which starts the process again.

Now if that’s possible, I started thinking about what else makes me feel better almost instantly after I start eating it? Cheese. Cheese is another one of my go to foods. If I apply the same theory as I was with wheat then maybe cheese is also just a temporary fix. I thought ‘what the hell’ and cut out dairy overnight. And in doing so, I could taper my steroids to the lowest they’d been in a while and not have the gastric issues come back. In fact, I noticed I had less pain, my heart wasn’t doing it’s funny beat things as much and I generally felt slightly less sick all the time.

You might be thinking ‘you’re such an idiot, how did you not notice that something was making your symptoms worse?’. Which is reasonable! But I feel terrible all the time. And by terrible I mean there isn’t a point at any part of the day where I don’t have to work hard to keep upright and breathing. So eating something that I’m intolerant to doesn’t make a lot of difference, it just continues the terrible feeling. But removing things means I get a bit of reprieve from some of the symptoms. And many slight improvements start to make a bigger overall improvement to my quality of life.

Plus it’s not as simple as ‘don’t eat X’ with me. Some days I’d be fine and others I wouldn’t. Remember how it gets better if I take more steroids? The doses are designed to try to replicate what a ‘normal’ person’s body does cortisol wise, but it’s not an exact science and has serious flaws. If I ate a piece of cheese at the same time as my steroids, I’d probably be fine because the steroids would compensate for the cheese. But if I ate the same amount of cheese before my steroids were due, that would give me big problems. And then you have to take into consideration all the other cortisol draining things that happen in the day- getting annoyed about something, walking around, not having slept well, being ill, just generally having a bad day…

I don’t have confirmation that my science is right but I’ve run it past a few medical friends and they say it’s plausible. But ultimately I was right. It *was* an endocrine thing. By accidentally eating things I’m intolerant to, it wasn’t directly giving me gastric symptoms, but it was making my body react as though it had been poisoned, increasing my heart rate, pumping out adrenaline, changing my blood sugar, and then getting diarrhoea as a consequence. Which then lowered my cortisol even more. But when I took extra steroids, my body was able to cope with the ‘poison’ better, which is why it made it stop so quickly. Whatever the science is, not eating dairy and gluten is helping so I’m sticking with it!

I don’t feel like I’ve solved anything yet though. I’m still very debilitated by my symptoms but I feel like I’m working stuff out. Now that my body isn’t permanently making adrenaline or in fight or flight mode, I can now feel adrenaline rushes if I eat something I’m intolerant to. Which is helping me work out other things- eggs for example is one I’m experimenting with. But, because cortisol is ever changing and I spend half my life trying to taper steroids, just because I ‘test’ something on one dose, doesn’t mean I’ll have the same result on a different one. So progress is slow. And I don’t think I’ve even remotely started looking at all the possibilities properly!

Thanks for reading this rather long blog. As before, feel free to share or comment with any ideas! 🙂

When people moan about their kids

I don’t mean just general moaning, everyone does that. I mean when people moan constantly about their kids, shout at them for basically existing, say how much better their lives would be without them… I confess, I don’t have much sympathy. I’ve noticed recently that there seems to be a lot of people in my generation who have kids because that’s what’s expected of them but didn’t really want their lifestyle to change or to actually have to make the sacrifices that come with having kids. They either liked the idea of a child or felt pressured into having one. Or, another ‘thing’ seems to be to talk about how much heartache they’ve had while trying to get pregnant, despite the timeframe being not that long at all, and then proclaiming a miracle baby when they do get pregnant. Some of those people seem to conveniently forget their ‘heartache’ they had before pregnancy and move into the moaning about their kids camp after a few months.

This post isn’t aimed at anyone by the way, it’s just my observations. It’s also not a pity post because I’m genuinely happy for people who get pregnant. The reason why I’m writing this post is because I don’t think some people realise how many random things have to align for people to be able to get pregnant in the first place. It’s a miracle that anyone gets pregnant and has a baby really, even if it is considered the normal thing to happen.

Have you ever sat down and thought about it really? Thought about *all* the coincidences that have to happen before a baby is even remotely conceived? (Aside from medical intervention)

1) 2 people have to meet and potentially get married/move in together which isn’t always a quick process

2) You have to coincide with menstrual cycles

3) your health has to be good enough that an embryo can take. You could have a cold one month and that upset it, or be stressed at work or something

4) a whole bunch of biological coincidences have to take place in a specific time frame to actually fertilise and implant an egg

5) you have to continue being healthy so you don’t miscarry. So again, a cold or stress could upset the balance. Bodies have malfunctions for really random reasons sometimes.

Aside from all the physical things your body has to do, there are so many other things that mean women don’t get pregnant during their ‘prime’ years:

1) not having a partner

2) circumstance- prioritising career, looking after a sick relative, finances…

3) health problems during those years

4) taking medications or having treatment which prevent pregnancy or would be harmful in pregnancy

5) travelling

6) experiencing trauma or physical injury

I mean, people who have accidental pregnancies have to be really unlucky in a way. That’s a lot of stuff that’s got to take place!

Aren’t bodies incredible? A lot of the time when people can’t get pregnant it’s because the body knows it wouldn’t be able to support a baby as well as its own body. So changes need to be made for it to happen. In the same way that people who are breast feeding don’t necessarily get pregnant as easily as with the first baby- the body knows you already have a baby so it’s unlikely to add another one into the mix!

My body regularly fails me. It doesn’t do half of what it’s supposed to, in fact it mostly does the exact opposite. But it’s kept me alive somehow. It knows what it’s doing backstage even if me or my doctors don’t. So when I hear people moaning about their kids and saying how they want their life back, I regularly think about all of the behind the scenes work that happened to make that child in the first place. So much work went into making that tiny human and they’re talking about them as if they’ve picked up the wrong cereal in the supermarket and want to take it back and change it? And I haven’t even talked about all of the coincidences that have to happen to have a healthy child be born- there are so many things which could happen during a pregnancy which could mean the child is born with a health condition or doesn’t survive pregnancy. (Parents moaning about their ‘imperfect’ or chronically ill or disabled babies is a whole other blog post)

I think the other thing people forget is that we’re lucky to have been born into this society in the first place. We (or most) aren’t homeless. We have access to good healthcare. We’re not refugees. Our kids can go to school. There are so many parents all over the world raising their kids in horrendous conditions and scenarios. I’m not saying that parenthood isn’t hard or that feelings are less valid, I’m just saying that when people moan incessantly about their kids without there being some kind of depressive element, I can’t help but want to shake them a bit and remind them that there are so many things we shouldn’t take for granted.

Like I said, I don’t mind general grumbling or rants about kids. Everyone moans about stuff like that. But if you do catch yourself bitterly (key word) thinking things like ‘I carried you for 9 months, gave up my life, sacrificed X for you’ about your kids, just think about how much of a privilege it actually is that your circumstances, health, and body allowed you to have that child in the first place. And for God’s sake, never vocalise those thoughts to your child.

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: