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!)

I can’t catch a break

Actually, I can, since all I seem to be doing is breaking things right now! My friend said this as a joke when I was telling her about my latest stress fracture and I found it funny so I stole it 😉

I fractured my foot a couple of months ago by getting off the sofa. Then I slipped and fell in the shower and thought I’d got away without fracturing anything. Except at the weekend, I went to put down a coffee mug while sitting on the sofa and there was an almighty crack, crunch and a lot of pain in my ribs. I get rib pain all the time anyway, but this stopped me breathing for 10 seconds and I couldn’t move for a little while. So I thought ‘you can’t seriously have fractured your ribs just by sitting on the sofa, can you?’ and took some pain killers.

A few days and some tramadol and Cocodamol later, my chiropractor tested my ribs and said he thought I’d broken one. I’d since decided I wasn’t in ‘enough pain’ for me to have fractured a rib (fractured ribs really hurt, right?), but he said that I was making the same face as when I’d broken my foot and he’d tested it, and my version of what’s ‘bad enough pain’ is probably a bit skewed. True. It’s not the worst pain I’ve ever had, but it is pretty bad. I think I probably weakened it when I fell, and twisting to put the mug down probably just finished it off.

Currently I’ve got a broken foot and broken rib. And I’m awake at 4am because I’ve now done something to my neck because of trying to sleep in a funny position for my broken foot and broken rib. Basically I can’t turn my head without getting pains in my neck, back, shoulders and arms and it’s spasm-ing even if I don’t move. Come on, body, give me a break!

I’ve got weakened bones because of having to take steroids (cortisol replacement)- some of my bones have osteoporosis and others have osteopenia (pre osteoporosis). But in order to heal bones, your body uses up more cortisol, which is why I take steroids, so I have to increase my dose. Which makes me more likely to get fractures, apparently just from sitting on my sofa.

I saw my GP this week and she’s *finally* referring me to a rheumatologist to see what they can do about my bones. I’ve been asking her for a year what I should be doing and she’s been reluctant because treatments for bones are usually only given to old people and there aren’t any studies as to the long term health implications bone treatments have on people. Mostly because old people are so close to dying (to be blunt) when they get put on them anyway, you can’t tell if they got heart failure because they’re old or because of the bone treatment. I can see her point, and I don’t want to end up with heart/kidney/liver failure by accident- broken bones won’t kill me whereas liver failure would. But referring me to a rheumatologist at least gives me some options to think through. I think me turning up with a foot cast and saying ‘yeah I think I broke my rib too’ probably helped.

Unfortunately, you can’t put your ribs in a cast. And they’re slow to heal because every time I breathe, it’s the equivalent of me walking on a broken foot without a cast on. It’s never immobilised, so it aggravates the break. And I can’t stop breathing… so lots of pain killers and some comedy moments when I get stuck are in my future. I’ll leave you with one from today when I got out of my Uber:

The foot cast is longer than my actual foot and you obviously can’t bend it at the ankle. The easiest way to get into a car is broken foot first, but I didn’t have this option with my Uber so I had to go broken foot last, and the angle for getting out of the back of the car like that is a *nightmare*. So I got in just about ok, but then when I got out, I couldn’t get the angle right. So I had to basically stand up, kneel on the back seat with my good leg, pivot around and ‘reverse’ bum first out of the car, all while this (very nice) Uber driver was trying to offer to help me. It’s a good job I can laugh at myself because it was pretty embarrassing! And I’m pretty clumsy, so naturally I dropped my backpack in the middle of the road. Natural instinct was to run away, but that’s tricky with a broken foot, so I kind of hobbled away as quickly as I could, my cast making a thunk pirate-like noise on the ground as I went. 😂

Gastro Issues: Can You Help?

Please share to see if someone else can relate/help me out 🙂 Warning… I’m writing this post to see if the powers of social media/blogging can help me get to the bottom of some of my stomach/gut issues. So I’ll be talking about bowels and bowel movements! Maybe don’t read if you’re squeamish or eating 😉

For people new to my blog, I’m a female in my 30s who can’t work (since 2015) because of my illnesses. My ‘main’ illness is adrenal insufficiency, which means my adrenal glands don’t produce the stress hormone cortisol, which is a hormone necessary for life and I’m on daily cortisol/steroid replacement therapy. Because it’s uncommon, I’ve had to do a lot of reading around it and other things I’ve been diagnosed with, making me an ‘expert patient’. But I’ve also been told by my doctors that I seem to be a pretty complex/unusual case of an already uncommon illness (more on that later). One of the big things I’m having issues with at the moment is abdominal pain and chronic diarrhoea, and I’m not really getting very far diagnostically/treatment wise/symptoms management wise. Diarrhoea is particularly tricky with adrenal insufficiency because it puts me constantly on the brink of adrenal crisis, which is a life threatening state. I have regular hospital/a&e admissions to try to avoid adrenal crisis.

What I need help with:

Working out what causes the problem and how I can control my diarrhoea, nausea and abdominal pain because I feel like I’m permanently firefighting to stay out of hospital and I have a poor quality of life.

I’ll give a bit more medical info later for any medics reading who want to know, but here’s my daily (gastro related, I have many others) symptoms:

– stomach cramps

– bloating

– diarrhoea (Bristol scale type 7). No blood, sometimes mucus. Sometimes green, mostly yellow/brown

– constipation

– sweating

– wave like/contraction like pains

– tachycardia, highest has been 180bpm. I also get funny heart rhythms

– feeling sick all the time

– feeling dehydrated

– feeling hungry all the time. I don’t think I am actually hungry, I think my body tells me I’m hungry because it’s lacking something. I feel better if I’m eating small amounts little and often

If I’m going to get stomach ache or diarrhoea, it’ll usually happen between 1pm and 4pm or later in the evening. But it happens other times right before I get admitted to hospital.

Things which I know make it worse:

– eating certain foods. I eat low carb, gluten free, no chicken, no pork because I noticed those make it worse.

– having a high heart rate. After eating some foods or eating too big a meal, I’d get tachycardia even if I wasn’t moving.

– if my temperature rapidly changes. If my body’s struggling or I go from cold to hot or hot to cold

– over exerting myself. Showering, walking too far and climbing stairs usually sets it off.

– alcohol. I don’t drink any now

– stress

– not eating. If I don’t eat, I still get diarrhoea, but it’s usually a million times worse and ends up with me in hospital straight away.

Things which improve it:

– drinking Coke Zero. I don’t know why. I’ve tried more healthy options like peppermint tea, ginger based things, green teas, but they don’t work.

– ready salted crisps. Again, I don’t know why. But when I’m trying to avoid a hospital trip, coke and crisps stop it or at least slow it down. I thought it might have been the salt in the crisps, but I’ve tried other salty foods instead and it doesn’t work.

– taking more hydrocortisone. Whenever I try to taper my steroids to my baseline, it gets worse, even if just 2.5mg. If I increase them back again, it goes away.

– lying down. If I lie down when my Apple Watch tells me I’m tachycardia then I’m less likely to have stomach issues.

– eating carbs in general helps. But it’s a short term fix and it definitely doesn’t help my endocrine problems.

– Cocodamol

– eating only a few mouthfuls at a time rather than meals.

I call an ambulance or go to hospital when:

– I nearly black out on the toilet

– if I’m dripping with sweat or shaking uncontrollably

– when I can’t put up with any more pain. When it’s really bad I get a ball-shaped pain on either side at the front below my ribs, so I’m assuming it’s 2 organs/muscles of something that I have parallel on my body.

– if I’ve had more than 5 movements in 24 hours and it’s not easing (trigger for sick day rules)

– if I get my ‘this is going to end badly’ feeling

– if I’m sick or more feeling sick than normal for me

– if I can’t eat anymore. Usually I can eat and drink normally even with stomach pain/issues

After lots of emergency admissions last year because of diarrhoea and the risk of adrenal crisis, I was referred to a gastroenterologist and had the following tests:

– sigmoidoscopy

– colonoscopy with biopsies

– endoscopy with biopsies

– SeHCAT scan

– faecal calprotectin was positive once but negative all other times

– faecal elastase normal

– stool cultures all normal

– MRI small bowel

which rules out:

– c. diff

– infection

– microscopic colitis

– ulcerative colitis

– pancreatic insufficiency

– carcinoid syndrome/neuroendocrine tumours

– bile acid malabsorption

– Coeliacs Disease, although not eating gluten has helped a little

The gastro doc said I have IBS but wanted me to follow up with a hepatologist because my ALTs were high and an ultrasound showed Non Alcoholic Fatty Liver Disease. The liver doctor said she wouldn’t rule out Crohn’s disease completely because I’m on daily steroids which might mask it and sent me for a fibroscan which showed no scarring. Waiting for follow up.

I’ve also been to see a cardiologist because of my tachycardia and had a 72 hour holter test and ECG. He ruled out Inappropriate Sinus Tachycardia and SVT because he thinks I’m tachy in ‘an appropriate response’ to something else going on (but he didn’t know what), so he doesn’t want to start me on meds to reduce my HR because my heart is compensating for something else. I seem to have POTS-like symptoms in that my heart rate goes up more than 30bpm from lying to standing and it goes up more the longer I stand up. In reading some of the lifestyle advice for POTS and making changes, I’ve managed to improve my average heart rate but still have periods where I’m tachy quite a lot. I’ve had a read about autonomic system problems, because I know they can contribute to gastro issues, but my GP isn’t keen on looking into it.

My daily diet is pretty much the same every day (although not everything in one day):

– yoghurt and grain free, low carb granola

– cheese

– coffee

– sugar free squash

– tuna salad

– egg muffins/omelette

– homemade vegetable soup

– carrot and cucumber sticks

– vegetables

– dinners like meat and veg, chilli, curries, stews (without rice/pasta)

– olives/Mediterranean diet things

– coke and crisps

Other things which might be worth knowing:

– I had a cortisol day curve test on what my baseline of hc should be and it said that my cortisol levels were sufficient- upper normal at my dosing times. It feels like my body isn’t getting to use the cortisol that’s in my blood though, because my blood work says it should be fine, but I still have lots of low cortisol symptoms.

– my body works backwards, which is the bit confusing my docs. But I have data and I run ‘experiments’ on myself to make sure I’m right before I talk to doctors. So if I eat, my blood sugar goes down, and it goes up by itself if I don’t eat. My blood pressure goes up instead of down in adrenal crisis. I lose weight when I take more steroids and gain it when I’m on my baseline. Caffeine brings my heart rate down, as does IV steroids. Those are a few examples.

– I can usually tell as I’m eating something if it’s going to give me stomach ache. I get a ‘ feeling’ and it’s usually right. Likewise I can make my blood sugar drop from 7 to 4 in the space of 5 minutes by eating the wrong thing. It’s like my body responds super fast to food.

– I used to have really high cholesterol but eating low carb high fat seems to have rectified that.

– I drink a lot and feel thirsty all the time. ? Diabetes insipidus. I don’t have diabetes mellitus.

– my thyroid is checked regularly and is on the lower end of normal

– despite having diarrhoea for the best part of 18 months, I’m still overweight. But then I’m backwards- I lose weight when I don’t have diahorrea and stay the same or gain weight when I do.

– other medical conditions I have: asthma, reactive hypoglycaemia, hyperlipidaemia, hypertension, osteopenia, depression, NAFLD.

– medications: hydrocortisone, asthma inhalers, montelukast, amitriptylline, Cocodamol, antihistamines, citalopram, vit d, calcium, ramipril, omeprazole, loestrin.

It could be down to IBS like the gastro doc says, because the symptoms fit, but I’ve done a lot of food diaries and experiments and think I’ve narrowed down food or eating habit related triggers. Plus it’s a bit odd that it usually happens at the same times every day, improves with steroids and happens after I do specific activities. I’ve looked into the FODMAP diet and will try it once testing has stopped if I have to, but I’m not sure it’ll help from a blood sugar management point of view.

The thing I struggle with the most is I permanently feel like I’m on the edge of adrenal crisis, which puts a huge strain on my body. Aside from that, having daily diarrhoea and pain is really annoying and hard to manage with everything else, and my quality of life is very poor- I’m housebound most of the time. I’m not due to see my endo for a while and I’m being bounced between specialists from various departments who all seem to be scratching their heads a bit.

If you come across this blog, please share and see if any of it rings any bells with you or sounds familiar! A lot of my diagnoses were found by accident or despite other indicators being ‘fine’, so I wouldn’t consider anything too random or unusual at this point!

Thanks for reading 🙂

To My Liver Nurse

To My Liver Nurse,

After such a positive appointment with my liver doctor last month, I wasn’t actually worried about coming to this appointment with you for a scan of my liver. Normally I get anxious about meeting new healthcare people for the first time, worrying they’re going to make snap judgements about me, blame me for bringing on my health problems myself, tell me I’m being dramatic or that it’s ‘all in my head’, lecture me about the side effects of steroids, roll their eyes and tell me that I’m not trying hard enough. Because that’s how most healthcare people made me feel for a long time before I was diagnosed with adrenal insufficiency, and even in a lot of appointments afterwards, because of their ignorance. Normally, I mentally prepare myself for a fight and rehearse my explanations in my head to any potential comments that might come up. And I spend a lot of time practising CBT and trying not to catastrophicize all of the things that have happened in medical appointments in the past. I’ve been working on this with my counsellor a lot. Because between medics trying to kill me fairly regularly either by withholding meds or by giving me lethal doses of drugs where I’ve literally had to fight them off, or them making me feel like I’m making a big deal out of nothing when actually I’ve been close to death, unsurprisingly, I don’t really trust medics.

I’ve been working really hard on trying to show myself that positive interactions with healthcare people *do* exist and therefore the week of anxiety I have before an appointment is unnecessary. And the appointment with my liver doctor helped me see that because she really got me. She was supportive, she said what needed saying but in a way which benefited me, not her, and she paid attention to what I was saying and didn’t belittle me or treat me like an idiot. From the word go, I knew I was in safe hands.

You were the exact opposite and I hated our time together. You had the potential to undo about a year of work I’d done surrounding what probably is some kind of medical PTSD. But you caught me on a good mental health day, fortunately, and I was able to rationalise it. You still caused harm though.

First of all, you were running half an hour late, which isn’t the end of the world, except for the fact I’d had to fast for this test. 4 hours might not seem that big a deal to you but it’s a huge problem for me. And regardless of whether or not you think it’s a big deal or not, keep that opinion to yourself. I happened to ask a healthcare how long it would be at the same time you came to call my name and could instantly see from your body language that you weren’t impressed. How *dare* I be commenting on your lateness?! I explained about my blood sugar starting to go a bit weird, which is why I was asking and you immediately said ‘don’t blame me, blame doctor what’s her face for turfing me extra patients’. Excuse me? Doctor what’s her face? Turfing? Defensive statements like ‘don’t blame me…’? We got off to a great start right there. Already I could feel my anxiety about the appointment being a horrible one reappearing. Except because of my adrenal problem, it’s not just a weight of anxiety in my stomach, it floods my system and makes me feel sick, dizzy, sweaty and shaky in the space of a nanosecond. Something which I’d been so far avoiding despite needing to fast.

Before you get defensive again and say ‘well I’d had a busy day/I’m overworked/she was asking me to do extra stuff…’ I don’t care, to be blunt. You are supposed to be a professional, act like one. Don’t blame your colleagues, you suck it up, smile politely at your patient and do your job. Bitch about it later to your colleagues if you must, but misdirecting your anger at your patients is not appropriate. You don’t seem to have considered my feelings about this appointment at all, so I’m definitely not going to be sympathetic to someone who gets paid to be there, no matter how crappy they think their job is.

As we were going into the room, you asked me if I was diabetic and I said no, but I have reactive hypoglycaemia so have blood sugar problems. You kind of stopped listening then, and interrupted me. Was it because you didn’t care or because you were running late? Either way, you were pretty abrupt.

You were pretty clear about what to expect from the test, which I appreciated. But then you said that you needed to switch probes because you couldn’t get the result properly. I was a tad worried at this point because the last time this had happened on the ultrasound of my liver, it had been because it was in a lot worse state than everyone had told me it was going to be. You said it wasn’t to do with that, more to do with, and I quote ‘how do I put this delicately, in people who are overweight’. I know I’m overweight, this isn’t a surprise to me, but I felt the anxiety in my stomach grow a bit more. Usually when people are ‘trying to be delicate’ about things like weight, it’s because they actually want to highlight the point more. They’ve made a judgement about you and they want to make sure that you know they’ve made that judgement, under the guise of trying to spare your feelings.

Great. You’re one of *those* nurses. And sure enough, I wasn’t disappointed. ‘Your liver’s pretty good really. Lose half a stone and your fatty liver will go. All you have to do is eat less and move more’.

You carried on talking for a bit (lecturing me is a more appropriate word), saying how in my case it was all to do with being overweight and how I ‘just’ needed to lose weight. Factually, that’s only partially true. Some of it is because I’m overweight. But there’s a whole host of other things that is giving me fatty liver and I can’t actually exercise more or eat differently. You didn’t ask me about my diet, my eating habits, my medications, my treatment plan, my other conditions or my lifestyle. You just made an assumption that I’m fat so I ‘just need to lose some weight’. Ie it’s *my* fault I’ve got NAFLD.

At this point I remember thinking to myself ‘you can let this go two ways: you can get upset about it and blame yourself or you can just ignore this stupid witch because she clearly knows nothing about you’. I decided to ignore you. I think I might have rolled my eyes at this point or made a comment about how I’ve got a lot going on. So you conceded slightly and said ‘well obviously it’s not easy to exercise with a broken foot’. I laughed. Exercising with a broken foot wouldn’t kill me. Exercising on a normal day would. My foot is the least of my problems, in fact, it’s more an annoyance than everything else I deal with on a daily basis. I told you out loud that that was the least of my problems.

I don’t really remember how the goodbyes went, I think you told me that the results would go back to my consultant and I hastily left. I just wanted to get out of there. The whole interaction maybe lasted 5 minutes at the most, but it’s been going round in my head for the last 5 days, along with my rationalisations about it. But those rationalisations go quiet sometimes, when I’m really tired, and instead I just get your voice shaming me about my health on repeat.

To you, I was 5 minutes of your day. To me, appointments and medics run my life. They *are* my life. You might think you’ve seen it all before and you might have seen millions of patients who haven’t really tried to lose weight or who maybe are contributing to their health problems. But here’s the thing: we’re all individuals. We shouldn’t be treated the same, otherwise why not put everyone with a fatty liver all in the same room and give us the same lecture you gave me. Hey, it’s efficient, it saves money and time and it means you don’t have to talk to any individual patients in a caring way, which you clearly lacked.

Patients with complex chronic illnesses are a whole different thing entirely. Do you think you’re the first person to lecture me about my weight? No. So even if you didn’t know my case specifically, you should at least have used your professional skills to determine what would actually be useful for me to hear. All your lecturing did was make me stop listening to you about *everything* you said afterwards, not just the lecture. Even if you had said something useful, I wouldn’t have heard it because I was desperately trying to drown out the negative voices in my head that had started up. It wasn’t even a choice, I couldn’t listen properly if I tried. You made me feel like it was all my fault, even if you don’t think what you said was ‘that bad’ or you remember it differently. But I’ve heard it before, over and over from various healthcare people, and whatever you said or didn’t say, this is how you made me feel. Except unlike when you think you’ve heard it before, I actually have. Because the fat shaming lecture is usually the same.

You don’t know me, and as a patient, it isn’t down to me to give you an excuse or a reason as to why your interaction with me wasn’t appropriate. At one point, I would have blamed myself. Not now, I’ve done too much work to be ruined by one ignorant nurse. So here’s the bottom line: your care wasn’t personalised and it should have been. Your attitude was poor from the start and it shouldn’t have been. I come with a complex series of emotions and prior experiences which might not have anything to do with you, but at no point did you bother to ask me anything which might have helped inform your lecture and you should have. You’re paid to do a job and I think you failed in doing it during our appointment.

What would have helped me? By all means, point out I’m overweight if it needs saying. Don’t be ‘cute’ with it though. Ask me questions- ‘are you able to lose weight?’ is pretty good because it gives me the chance to say what exactly is hard about losing weight. And then if I need something to kick my arse in gear, then you can launch into your lecture then. Give me the benefit of the doubt before casting your judgements.

Something which bothered me a lot was the fact that I’ve actually lost a stone in weight. But you didn’t ask me that so I couldn’t tell you. I’ve worked really hard at having a liver friendly diet. I’m a model patient. But you didn’t ask me you just assumed. I needed you to acknowledge I’d made some progress. Because I have, and when your life revolves around healthcare appointments, you really need people to recognise the work you’ve put in, the determination it’s taken and give you some encouragement to keep getting out of bed every morning.

I was 5 minutes in your day. But your shaming has filled up my last 5 days. It’s a long way til my next appointment where someone might acknowledge my resilience. Instead of being able to use your comments as a means of positive encouragement to keep going when things are hard, I’ve now got the guilt and shame that you inflicted on me to try to drown out instead, on top of everything else.

You can’t change the facts of my complex, stupid illnesses but you can change the way you make me feel about them. And you made me feel like I was a failure from our brief interaction.

Having to fight to stay alive when it feels like your doctors don’t care

TW: death, mental health

NB: regardless of the flaws in the system, individuals making mistakes, staff having a bad day, human error, someone reading my file for the first time… etc, this post is about how interactions with health care staff have made me *feel*. Staff might not be able to do anything about a broken system, but they can do something about how they make patients feel when using it.

It’s impossible to have a debilitating, chronic illness without thinking ‘what’s the point in this? Is it worth it?’ at some point. When something completely takes over your life and affects every second of every day, making normal things seem like Everest, you wouldn’t be human if you hadn’t wondered what it would be like if you just didn’t wake up one morning. I read on twitter recently (and I’m paraphrasing) that people assume the worst thing that could happen is death, but having a life limiting, life threatening, chronic illness every day where you’re essentially ‘dying’ every day, is possibly worse. That made sense to me. I’m not suicidal right now, but when it’s really hard, it feels like being in some kind of purgatory.

So imagine being in a passive suicidal state (where you don’t want to die, but it’s feeling like hard work to stay alive both physically and mentally so you want an ‘end’), and then you have to argue with a doctor or other healthcare professional about what you need to stay alive.

For context: I’m steroid dependent, because I have adrenal insufficiency, which means I need to take steroids at set times in the day to stay alive. I won’t be able to stop taking steroids ever and I’ll die pretty quickly if I don’t have access to them. This week, I’ve had to argue with my GP about getting the right amount of my steroids prescribed, and the hospital because they cancelled my appointment with my endo last minute because he went on holiday and won’t reschedule it for any earlier than November. These issues come up a lot, particularly with my GP.

With adrenal insufficiency, you’re recommended to have 6 months prescriptions of steroids to allow for stress dosing and any possible supply issues. My GP surgery doesn’t understand this and this week said I couldn’t have any more than 5 days worth because:

– they misunderstood the reason I’m taking them, thinking it was a different condition

– they didn’t understand how stress dosing means I don’t have a rigid dose every day/month. It varies some months

– I needed a medication review (but I did one 2 weeks ago)

– they couldn’t find notes from my consultant saying my dose. There’s a lot of letters on my file, but there are at least 2 which say my consultant is happy with my management of my illness and that I know what I’m doing

– they want me to see my consultant before authorising it. Except that’s a whole other problem…

– they said the pharmacy had done it wrong

– they couldn’t find/didn’t understand the guidance I’d provided them about my illness from NICE and 2 charities

– the computer said I couldn’t have it

All perfectly reasonable things to query, were this the only time I’d made this request.

As for the hospital, one lady I spoke to had the response of ‘I don’t know what to suggest really, you’ll just have to keep going to a&e if you get really bad’. So ‘try not to die before november’, basically.

That’s the abridged version because me moaning about everything that’s gone on this week isn’t the point of this post. Sure, 90% of the people we (my husband did most of it) interacted with were polite, barring one receptionist on a power trip. But that’s not always the case. And it still didn’t stop the feeling creeping in:

They don’t care if I die.

What happens if I just stop fighting to get my steroids? If I run out after the 5 days my GP gave me? If I didn’t call an ambulance and didn’t go to resus? What would happen? I’d die.

Would these people care? Probably not, because they probably wouldn’t get told about it. They’d maybe only notice that me or my husband had stopped ringing them to moan at them, and they suddenly had more time on their hands.

So why should I care if they seemingly don’t? All they do is roll their eyes when I’m having the same argument with them. Nothing changes. They blame each other, they blame me, no one wants to step up and take responsibility. My husband has to go through the hassle of trying to sort it because I’ve got so stressed out by it all and, ironically, I don’t have enough steroids to waste on stress dosing because they don’t want to give me any in the first place. Or he comes home to me crying about it, worried that it won’t get fixed and I’ll end up in adrenal crisis. So I feel bad and worry I’m a burden, which makes it worse. And then because I’ve wasted time and precious energy on this, I don’t have any to spend on quality time with my family or friends, which affects those relationships and limits my quality of life. Because it’s the exact same problem every time, your brain preempts it, so you’re gearing up for a battle before even picking up the phone. But it still happens, nothing changes.

This happens at least 3 times a month.

It feels like no one cares how this affects my mental health. So when I’m already in my purgatory because of having a chronic illness in the first place, having to fight to stay alive is a bit like the devil poking you with a pitch fork at the edge of a lava-filled volcano. Do I want to keep getting burned by his pitch fork, and maybe get out of it alive? Or do I just give in and jump into lava?

It’s exhausting. I know what I/my husband needs to do to ‘fix’ it. I know who to complain to, who to argue with. But is there a point to all of this? Is it worth it? What would happen if I stopped arguing?

Healthcare professionals, when you deal with patients with chronic illnesses, you’re only a tiny cog in a bigger machine. But, if one of the tiny cogs breaks or doesn’t do its job properly, the machine starts to break down, and it takes a hell of a lot of work to sort it all out and get it going again. Your role in it might seem small. You might not have any influence over how the entire system works. But the way you deal with patients matters, and I need people to see that.

The system won’t get fixed overnight, but here are some things HCPs/admin staff could do to help me:

– don’t make me feel like it’s my fault or that I’m an inconvenience

– apologise, even if it’s not your fault. Saying ‘I’m sorry this has happened to you’ means a lot

– try to come up with a solution. Don’t just tell me the system is broken and there’s nothing you can do about it. Because there has to be, particularly if death is an outcome

– follow through on any promises you make. Don’t make me ring and chase you

– don’t blame other members of staff. Particularly if it’s not their fault. And definitely don’t try to play me or my husband off against me, which has happened

– take some of the chasing over for me. I’m always the go between- why can’t my surgery ring the pharmacy? Liaise with the hospital?

– I can tell if you’re lying to cover something up. So please don’t.

I’m assuming people go into medicine because they care about other human beings. Care doesn’t just mean dealing with me as an illness, it means showing me you care about me as a person, that it is all worth it and there is a point to my life. Make me feel like you care about me so that at least that battle is easier.