I’m still here

It’s been a while since I’ve written a blog and I’ve had a few people/followers message and ask if I’m ok (thank you 🙂 )

A lot of the reason for being so quiet is one of the most painful things for me since dislocating my shoulder has been anything involving using my fingers, like typing on my phone or the computer (and I hate voice transcribing). Or even holding my phone hurts. And crochet did for a long time! Something to do with compressing nerves (or something), but with the whole covid thing, I couldn’t get it checked and it’s been slow healing. But I’m getting there now! Still a while before long blog posts though. And between pain, normal brain fog day to day stuff and trying to taper my steroids, I wasn’t really with it for a few months.

Which brings me to corona virus. It’s been extremely stressful for me. It’s been stressful for everyone but I also literally just had an adrenal crisis the week before we started getting daily briefings from our PM (ie it all got bad fast here) and I was still trying to heal my shoulder.

The additional stress came from our government and media essentially reassuring the general public by saying ‘it’s ok, everyone who dies tends to have an underlying health condition anyway’ and ‘if you’re healthy you can have a ventilator because we won’t be giving them to people who’ll probably die anyway, like the ones with health conditions’. The Prime Minister basically quoted Lord Farquaard from Shrek when he said ‘some of you will die, but that’s a sacrifice I’m willing to take’ (ok so what he actually said was ‘many more families will lose loved ones before their time’, but I didn’t find any of his speech reassuring)

Rationally, I know how the media hypes things up. But I’ve also had *so* many terrible experiences in hospital where people have almost killed me on a day when the NHS was normal, let alone in a pandemic. My worst fear in general is being unconscious or on a ventilator because I can’t advocate for myself if I’m unconscious… I’ve said before, there’s been discussions about me potentially having PTSD, and this definitely started to surface. Along with the fact that no one knows how to treat my adrenal insufficiency on a normal day, let alone with a new, deadly virus which no one has any experience in. Endocrinologists couldn’t agree on what to do, or even how much at risk we are, and there was so much conflicting advice but ultimately ending in ‘just don’t catch it’. It was a nightmare.

And, obviously, having AI, means stress affects me in a very bad way anyway. So I was pretty much trying to get through every minute of the day one minute at a time. Now there’s been some guidance and we’ve been told what to do, but it’s completely different from how I’d usually manage it, and it’s only just appeared in the last couple of weeks. Which is good to know but terrifying at the same time. Realistically, if I got it, I’d be in hospital. I need hospital for stupid things like opening the oven door and the heat getting me. Or a normal UTI. So I’m doing absolutely everything I can to avoid this virus.

So I’m still here. I’m still extremely anxious but it’s a lot better since we’ve been on lockdown. Problem is, the schools are supposed to go back on the 1st June and my mum’s a headteacher. The current guidelines the government proposed mean it’s not safe for staff to be in school (and pupils) but they’re expected to get on with it. Plus lockdown just seemed to get lifted overnight and people are already forgetting things like social distancing. Lots of things which are making me more anxious again…

On the plus, I’m currently isolating at my parents house in a rural place. Which means I can go to a field or the fells nearby and not see anyone. With movement restrictions being lifted slightly, it meant I could get in the car yesterday and go to a common in the hills about 5 minutes away. It was the first time I’d been ‘out’ anywhere in 11 weeks and it made a huge difference mentally!

Everyone’s lives are on hold. But on top of the normal anxiety everyone has right now, I feel immense pressure to not get sick, even ‘normal’ sick, but especially not coronavirus sick.

This post has taken me about a week to write, with my slow typing so enough now. I hope everyone is keeping as well as they can be!

Part 2: a dislocated shoulder and 2 adrenal crises

Well, sort of… I managed to head off adrenal crisis number 2 before it became one! (Read part 1 first)

I dislocated my shoulder the day before in York, they popped it back in and then we made our way back over to Cumbria, where I was staying with my parents. Hindsight is a wonderful thing though. I left the hospital feeling ‘alright’. Yeah, my shoulder hurt, but it wasn’t that bad. But, neither me or the hospital had taken into account:

– steroids mask pain/reduce swelling. They’d given me a fair amount to treat my adrenal insufficiency, but it would also have helped my shoulder

– they probably hadn’t actually given me enough steroids. They only gave me them until they put my shoulder back in, but a ‘normal’ person’s body would keep making extra cortisol afterwards

– I wasn’t given any pain killers on discharge and they’d given me paracetamol in the hospital. So I couldn’t take any more paracetamol or Cocodamol overnight

All of the above meant I didn’t sleep and then my adrenal insufficiency got grumpy pretty quickly. My mum decided I shouldn’t be in that much pain still (and pain burns through cortisol) so suggested we try out of hours and 111. But they were super busy and I started feeling really weird anyway so we headed up to a&e.

By the time we got to a&e, I really wasn’t very well again. The reception wasn’t really getting the urgency of how fast I needed triaged and kept refusing to move me up the list. Which meant I ended up doing my emergency injection in the waiting room for the second time in less than 24 hours. My dad was a lot more efficient at it this time!

We managed to get to see a doctor and I got re-xrayed to make sure my shoulder hadn’t accidentally popped back out again (it hadn’t). But they wanted to admit me because I had crisis symptoms and I needed to get on top of my pain. Basically, while I was still in a lot of pain, my adrenal insufficiency wasn’t going to cope. It’s like having a hole in your fuel tank. You can fill it with fuel and the car might still run a bit, but fuel is still leaking out and it’s not going to get better and stop losing fuel until you fix the hole. So I was going to continue to lose cortisol until someone got on top of my pain.

I got admitted to an assessment ward with The Margarets (more on them later) and started new patient intake with the nurse. Basically they do some obs and ask you some questions about what kind of physical care you’ll need while in hospital. Then a doctor comes to review you so you can get your meds put on your chart.

The Margarets were very chatty (2 old ladies) and quickly gave me the ins and outs of the ward. They weren’t impressed by staff efficiency at all and said the doctors were very slow at coming round and actually doing what they said they were doing. This didn’t bode well. A&e had said they wanted me back on IV hydrocortisone and that has to be written up by a doctor. With the next dose due in the next couple of hours. Argh.

Then it got bad pretty quickly. My parents went downstairs to the cafe while I was doing new patient intake and were going to come back up for visiting hours in the next hour. Right before the start of visiting hours, I went to the toilet and promptly nearly passed out from pain and just general sudden increase in temperature. This was a bit stressful because it takes a lot for me to actually nearly pass out ie I’m usually in resus and also the new pain wasn’t in my shoulder, it was in my bladder which meant I probably also had a UTI. So I did something I’ve never done before and pulled the crash alarm.

The crash alarm sets off an alarm (obviously) and you get a lot of people running your way fast. Usually it gets pulled by a member of staff when someone is in some kind of arrest (like on TV). Technically I shouldn’t have pulled it but if I’d have just pulled the disabled emergency cord it could have been 10 minutes before anyone came to my rescue and I needed help fast. I said about my adrenal insufficiency and how I needed 100mg HC immediately but no one had a clue what that was or who I was. As far as they were concerned, I was still breathing so it was a false alarm. Two nurses helped me back to bed and dumped me there without my call bell.

I started to have a panic then. Bearing in mind I’ve got my arm in a sling so can’t manoeuvre very well anyway but now I also had really bad abdo pain, I was actually pretty stuck. I couldn’t move. So I cried. The Margarets jumped into action (as much as ladies on oxygen and IV drips can anyway) and started shouting for nurses and pushing their call buttons. My parents also appeared on the ward at the same time, saw me sobbing in a foetal position and my dad went to shout at someone.

Then a bunch of amazing coincidences happened. The consultant and her junior for the day happened to be at the nurses’ station when my dad went to it, and that consultant also happened to be one of two endocrinologists who work for the trust. It was a Sunday and she was in capacity as medical consultant so it was actually a miracle that she also happened to be an endocrinologist working that day. Overhearing what was going on (my dad has got good at telling people about adrenal insufficiency) she came straight away, I explained what had happened and that I wanted a stat dose of IV HC and she said very matter of factly ‘yes, that’s a perfectly reasonable request, why don’t you go get that NOW’ to her junior. Then said she’d come back and review me properly later but wrote my IV doses on my chart, including one that if I asked for it, they had to immediately bring me IV HC. There were a few sheepish nurses after that, but, to be fair, if you don’t know about adrenal insufficiency, you’re not going to know how fast you have to move, and I was a new patient.

The Margarets, in case you haven’t got wind of what they’re like by now, *loved* this little bit of drama. It made their day. But it meant they wanted to know everything about me, my life, why I was from Coventry, demanded to see photos of my husband…

The doctor came back and we had a really good conversation about me/my endocrine conditions. Something which a lot of people find difficult to understand is that I don’t have anyone besides my own endocrinologist who knows as much as I do about my conditions. A lot of them are rare/obscure and hard to get your head around. So the fact that she was able to immediately understand, give me some options, and then tailor them all to me was huge. Especially because I’ve never had a dislocated shoulder and infection at the same time- I was feeling out of my depth and no idea what I needed. She charted some decent pain relief, regular IV Hydrocortisone (and made sure everyone knew how important it is to be on time) and wrote up some antibiotics for the infection I had.

The evening and following morning was spent in a blur of good pain killers, IV HC and trying not to strangle The Margarets for being racist/homophobic. To them, someone coming from a town 12 miles away was considered a foreigner, let alone anyone who ‘looked’ foreign. And this was the day after Philip Schofield came out as gay, which meant they were boycotting ITV. Another review in the morning from a different doctor and I was allowed to go home with prescriptions for pain killers (tramadol and paracetamol) and antibiotics.

If the karma gods were actually being reasonable, you’d think that would be it, right? A dislocated shoulder and bad UTI are enough for anyone to be getting on with? Nope. There’s going to be a part 3!!

A dislocated shoulder and adrenal crisis

This is probably going to be a blog post of many parts. Partially because it was a pretty eventful few weeks, but also because using my phone for a long time hurts my shoulder and I’m probably still a little bit stoned on pain killers so will likely not make much sense!

My husband had to go away for work, which meant I had to go to my parents’ house for 2 weeks so they could look after me. My adrenal insufficiency means I can’t stay at home by myself and I wouldn’t be able to look after myself for that long anyway. So off I went to live at my parents’ in Cumbria for 2 weeks so that ‘if anything happened in an emergency, I’d have someone to help me’.

Good job really!

Mum and Dad had already arranged to babysit my niece and nephew on the Saturday in York, so I went too. Sounded like a fun day out! I’d not seen my brother’s latest house in York, so when we got there and my niece said she wanted to show me her room, I followed her through the kitchen and into the hall.

What I should have perhaps realised is that me and Jenna share the same clumsiness genes. And she’s only two, and was very excited to show me all of the things in her house. So instead of predictably continuing to climb the stairs once she’d started them, she decided to jump back down and show me the bathroom. And to be fair, I wee a lot, so her telling me where it was was quite apt really! Me not being coordinated either, didn’t have anywhere to go despite already moving so I somehow managed to pull her out of the way so I didn’t actually fall on her and fell into the wall instead. There was a little bit of a pop as my shoulder dislocated itself and I kind of slumped onto the stairs.

I’ve actually dislocated the same shoulder before skiing (far more dramatic!) although it was my brother who tripped me up that time! Basically, if you’ve never dislocated anything before, it starts off just feeling like your arm’s about to fall off unless you hold it. And then everything starts to really bloody hurt as the muscles and tendons try to pull the joint back into the socket. It’s one of the most painful things you can do. Unfortunately for me, my slumping spot was right next to my brother’s drying washing on the radiator and I knew heat was definitely going to make it a lot worse fast. And I was still wearing all of my outdoor clothes still.

But, despite the increasing pain, I knew I had to jump onto my adrenal insufficiency quickly. When you get injured, your body can go into shock and a whole bunch of hormones fire up to try to prevent that. One of which is cortisol, which you don’t make if you have adrenal insufficiency. And if you don’t replace it fast enough, you can have an adrenal crisis, which is life threatening. Jenna, to her credit, once she’d got over being abruptly pulled to one side, was very good! I very calmly said to her ‘can you go get grandad please and get me my bag?’. And she did! Then she stood calmly out of the way and watched what was going on.

In my bag is an injection kit, which is what gives me the extra cortisol I need to keep alive in these kind of situations. But it’s not like an epipen- you have to assemble a syringe, measure up liquids, mix with a powder, draw up a certain amount of liquid, get rid of air bubbles and then stab me with it. It’s a faff even if you’re well practiced. It’s even harder if you’ve never done it before, which my dad hadn’t. And I clearly couldn’t do it myself because I was trying to stop my arm from falling off!

So my dad started trying to do it and I decided to ring the ambulance. Except there was no bloody signal in the hallway so we had to find a phone which had signal. I wasn’t going to give my brother the satisfaction of dying on his pile of washing though, so I stuck with it, explained to the very good dispatch what had happened and could she put it on blue lights, which she did. Also while trying to talk my dad through the injection.

By now I was really struggling to stay conscious. So in my head I was thinking ‘dad will sort the injection and that will help’. Dad went to hand me the syringe but there was no liquid in it and i have to admit that’s when I thought ‘oh Jesus, this could actually end really badly in the next 30 seconds’. To be fair to dad, you have to angle the syringe at the most stupid of angles to be able to get the liquid in it, and he wouldn’t have known that until he tried to do it for the first time. But it did mean he had to go back 3 steps and I really needed the drugs! He was a lot better at it when he had to do it again the next day (blog post number 2 of this saga!!)

It was at this point that I could hear sirens, dad got the injection sorted and I stabbed myself with it. It doesn’t work instantly but it works fast, so it was a relief to get it.

However, despite the ambulance dispatch knowing all about adrenal crisis, the paramedics did not. Their first response was ‘oh we got told you were having an adrenal crisis’ and their second was ‘and your shoulder isn’t dislocated unless you already put it back in?’. Wrong on both counts. Then they wandered off and left me still half passing out on my brother’s washing!

(maybe skip this bit if you don’t like death talk) It’s weird what you focus on when you’re half dying. Whenever I’ve been in situations like this before, I’ve got through it by focussing on getting to a point where there’s ‘enough’ help sorted. You can’t willpower your way out of an adrenal crisis, just like you can’t a heart attack. But, I do know that my bloody stubbornness has kept me alive so far when my blood work says I should be in a coma but I’m still sat up having a joke and a chat. So my instinct to survive must be strong.

But I genuinely did think I was going to die at that point. I distinctly remember thinking ‘it would be so much easier to give into this floaty feeling and pass out and I wouldn’t have to worry about it then’. I’d kept myself going until the ambulance got there, the ‘help’ I needed, but they were, to be frank, shocking. And could have killed me. They’d literally left me slumped in the hall, not taking my impending adrenal crisis seriously at all, having done no obs, not trying to get a cannula in to give me my life saving meds, no pain relief… If I was going to give up, it would have been then.

Except at that point, I took a big breath and inhaled my brother’s soggy sweatshirt half in my mouth from on the radiator. That f***** washing!! I was not giving my brother the satisfaction of his washing having killed me. Hell no!

The ambulance crew came back and my injection had started to kick in so I started to kick off a bit and argue with them. Get me some pain relief (they got some gas and air, it’s not as fun as people have led me to believe!). My shoulder is definitely still out, so stop pulling it, we need to be getting to hospital… they made me walk to the ambulance which I honestly don’t know how I managed, sheer desperation of needing to get there I reckon. Still no obs or cannula or anything. They kept saying ‘yeah but you had your IM and you’re clearly not in crisis’ and were faffing around in the back of the ambulance doing paperwork and making my mum wait outside.

Side note: no obs means they have no clue if I’m in crisis or not. And I always look ok and sound ok and then I’m not ok. And I’d never, ever been so ill before. And yeah, I’d had 100mg IM hydrocortisone, but that’s like filling your petrol tank up with fuel when there’s a gaping hole in it. You get some of it, but ultimately until you fix the problem (eg my dislocated shoulder), it’s not going to be much use. And the ambulance man in charge was adamant that my shoulder was back in.

Usually I try to get people to do what I need to do politely but I didn’t really have the luxury to do that here. They were actually going to wait until i was definitely dying before doing anything. I’ve been blue lighted for far less in the past. So I had a strop, told them they should be pre alerting resus, sticking their blue lights back on and doing some obs. I think the bloke mostly did it to ‘reassure me’ that it was fine but the next thing I knew the consultant at the hospital had said ‘blue light her in and give her what she wants’. And my mum appeared. So I then started telling her that she wasn’t allowed to leave me alone at all from now on even at the hospital and if I passed out she was going to have to insist on being given my drugs etc because people seemed stupid. The ambulance guy did a BP *finally* (highest I’ve ever seen it) and I was tachycardic a lot so I insisted on more IV hydrocortisone. He argued a bit saying about BP going down in crisis not up and I was like ‘YES BUT I’M NOT TEXTBOOK SO GIVE ME THE DRUGS’.

The other problem was, every time I stopped puffing on the gas and air to argue, the pain became unbearable and I started having to work hard to stay conscious again. Nothing like having to choose between giving instructions to stay alive and actively staying alive… On a serious note, if I didn’t already have some kind of PTSD from medical stuff I reckon I probably do now. More on that in a later blog post.

We got to the hospital after about 20 minutes (even with blue lights) and a doctor took one look at my shoulder and said ‘yep, that’s dislocated’. Oh really Mr ambulance man?? What had I been telling you?! His colleague said ‘we need to get you into a gown so I’ll help you take your dress off, or I can cut it off’. Cut it off! Do I care about a dress right now?! Not really! There was a bit more faffing I think mostly because the ambulance bloke didn’t really get the urgency so handed over to the first doctor as ‘it’s fine’. Thankfully I think his colleague had got my point by now so after a bit of discussion, I got moved to resus where the ED consultant picked up my case.

Things got better after that. The first doctor came back, but he was now assigned as my doctor and didn’t leave me until I was stable, rather than having multiple patients like he had when I’d first got there. The consultant in charge kept checking back and tried to ring my hospital in Coventry to get some info as to how to treat me properly/what they usually do with me when I’m in a&e. I got some morphine and IV paracetamol, they x rayed my shoulder, put it back in, x rayed it again and gave me some more hydrocortisone. After another hour, I got stepped down to majors from resus and they even sent me an endo specialist reg to review me.

The next job was getting back to Cumbria. It’s compulsory after a hospital trip to go to Macdonald’s (I don’t make the rules). Plus I hadn’t eaten much all day so off we went. I know now I still wasn’t feeling right because I wasn’t bothered about going into Macdonald’s wearing a hospital gown and a sling, looking like I’d been dragged through a hedge backwards. It must have looked pretty amusing to the people of York! And then again when we stopped at a service station.

So that’s part one of my pretty dramatic week, lasting about 5 minutes with my niece before dislocating my shoulder and trying out a new ambulance service and hospital! That would have been enough drama to put up with for about a year, but it got a lot worse the next day…

I had a bath!

Why is this exciting? Because I haven’t been able to have a bath in about 4 years. Obviously I’ve washed, I’ve not been unclean! But one of the things I used to really like was a bath and the last time I had one I ended up on hospital.

Having a bath was a problem for me because:

– the heat would lower my cortisol fast. Heat in general uses cortisol quicker in anyone eg warm weather, but when you replace it with pills, it gets tricky. And you can’t really justify updosing just so you can have a bath!

– getting out of the bath from hot to cold would ‘shock’ my system, depleting even more cortisol

– either the initial heat or changes in temperature would make me tachycardic which gave me a whole bunch of problems that would last hours

– physically getting in and out of the bath changed my blood pressure too dramatically and it would take ages to settle

– heat often gave me hypos

– getting in and out of the bath was dangerous because of the risk of fracturing my wrists or slipping

– my general pain level meant I couldn’t get in and out of the bath

– it took too long to recover afterwards.

Simple solution? Don’t have baths.

But when you have a chronic illness, you really miss the normal stuff. It’s like when you’ve had something like the flu or a stomach bug and you’re desperate to go back to eating your normal food and resume your normal activities but you don’t want to push your luck too much. Except it’s all the time. When you’re constantly making sacrifices or compromises or saying no to things you want to do, suddenly really normal things like having a bath are actually quite exciting. It was a no brainer- if baths mean going to hospital, obviously I won’t have one. But if there’s a way that I can do something normal, then it’s worth getting excited about.

Why can I suddenly have a bath when I couldn’t before? A lot of ‘planning’ and small changes. All of those problems still exist, just I’ve done a lot of work in other areas which have a positive impact on my ability to be able to cope with a bath:

– a lot of my issues were to do with extreme changes/responses to temperature. I’ve done a lot of research and work into how I can put my adrenal system under less pressure during the day, right down to the type of food I eat. Before, having a bath was a major stress on my body, now it’s still a problem but my body can deal with it slightly better

– I got in the bath early on so I could control the temperature a lot easier

– I made sure I had it after I’d eaten, but not too close to after I’d eaten (digesting food and bath would be too much pressure on my adrenal system)

– I have prophylactic rehydration drinks now so dehydration was less of a risk

– I’ve practised a lot how to safely use my hands and wrists to move around so that I don’t fracture things (or so I stand as little chance as possible)

– I’m on a stress dose after a cold and I’m tapering, so I actually have a little bit of extra cortisol I can afford to burn away a bit. I might not be able to have baths on my baseline but we shall see

– my pain is better controlled so I can get in and out a bit easier

All of that meant that I had a bath and I didn’t need to go to hospital! It might seem like a dull thing for normal people but for me it’s a pretty huge achievement and a step closer to doing normal things other people take for granted.

Having said that, it’s currently 2am and I’m awake writing a blog post. Which could be a knock on effect of having a bath, but could equally just be a case of that’s what my body is doing today. I won’t know until I try again though, so for now, I’m feeling positive about the fact that I could have a bath 🙂

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!

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!

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! 🙂

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!)