Foods I Don’t Eat Anymore

I’ve been following low carb high fat (LCHF) for over a year, which basically means cutting out most or all carbs, and replacing it with moderate protein and high amounts of healthy fats. This is a lifestyle that is approved of by lots of health professionals, including diabetes related organisations. I’ve written posts about the science and maths in the past, but the thing I want to talk about in this post is what it actually means to follow this lifestyle.

I’m calling it a lifestyle rather than a diet because I’m eating to keep as well as I can, not for some kind of ‘ end goal’. Ie I don’t do it for a few months and then go back to old eating habits and I tend not to have ‘cheat days’ like people on diets for losing weight tend to.

One comment I get a lot is ‘at least you’re not pregnant/have cancer. They have way more foods they can’t eat.’ Pregnancy is an easy reply- it’s 9 months. If you can’t manage to sacrifice booze and cups of coffee for 9 months, you’re not ready to be a parent, clearly. As for cancer, it’s usually people trying to be upbeat and ‘positive’, but it’s actually more annoying than anything else. Lots of people have diets and lifestyles they follow to keep them healthy or to try to anyway- there are lots of different types. Some of the things on my list are because they don’t fit in with LCHF, some are because they make me react with my reactive hypoglycaemia so it’s best to avoid them. So here are the things I don’t eat anymore:Cake


Pasta and noodles



All Fruit

Fruit juices


Pastries like croissants

Pudding in general

Waffles, pancakes

Ice cream/frozen yoghurt/custard

Potatoes and sweet potatoes

Chips and sweet potato chips


Some sauces which use flour or sugar eg ready made sauces you can buy in supermarkets

Most Chinese food

Most takeaways except things like Indian meat and kebab meat

Crisps except when I’m nearing crisis

Chocolate except dark chocolate with minimum 85% cocoa solids

Battered things eg battered fish, chicken nuggets, chicken Kiev

Drinks with sugar in, even natural sugars

Most diet drinks except from Coke Zero now when I’m having stomach issues

Hot chocolate, milkshakes, Frappuccinos

Tortilla wraps

Beans except ones which are green

Fast food

Some types of soup – some have a lot of carb in


Crackers and thin breads

Sugars and sweeteners

Semi skimmed milk

Jams and jellies

Honey and syrups



Some condiments which are packed with sugar eg bbq sauce

Salad dressings which have a lot of sugar in

Cereal and granola

Yogurt except for natural and Greek yoghurt


Quiche and pasties or anything with pastry

Things with lots of preservatives also tend to have a lot of carbs in them. So things which have a long shelf life tend to be out for me

Couscous and quinoa except in small quantities

Pulses and grains except in v small quantities

Sometimes, I go for a best case scenario, like if I’m eating out. Salads, meat and dairy are good, but sometimes options are limited so I go with foods which have the lowest carbs but aren’t necessarily as low carb as I would like.

Now if you see me eating one of the things on my list, I don’t need chastising. There might be a reason for it: I could be treating a hypo. I might be doing a test to see if my body can tolerate reintroducing certain foods. I might just have thought ‘sod it I really want to eat cake’. All of those are legitimate reasons! The good thing is, I’ve been doing it consistently for so long now that I don’t really want to eat a big slice of cake because I would basically have a hangover from the carbs. So it’s not actually worth enjoying a slice of cake for 5 minutes a lot of the time!

There are some foods I love which I can eat plenty of on LCHF:


Deli meat


Things with cream cheese



I’ve discovered a new love for fish and seafood

Meat in general

Bacon… lots and lots of bacon

All day breakfasts (minus the bread)

Mixed grills

Raclette and fondue are amazing meals for me!

Cauliflower ‘mac’ and cheese is one of my favourite meals

As is butternut squash, mozzarella and bacon bake (as close to cheesy chips as you can get!)

You just have to be a bit inventive and imaginative with the way you eat things. Overall I’m finding the pros of this lifestyle outweigh the cons in terms of how I feel and manage blood sugar. Having said that, low carb puddings are not up to much!


What I Learnt from Grey’s Anatomy

Spoiler alert!

Last week on Grey’s Anatomy (UK anyway), Dr Bailey had a heart attack. She thought she was having a heart attack long before she had visible symptoms and tried to check herself into a different hospital from the one she’s chief of surgery at. What I learnt was, her experience of trying to access healthcare was pretty similar to how I experience accessing health care. And she’s a (fictional) doctor! No wonder I don’t stand a chance sometimes!

She presented herself calmly at the desk and was overlooked and spoken to rudely. 

Now, this depends on who is working behind the desk and doesn’t happen every time. But, to be frank, if you walk into A&E and the first person who speaks to you is rude, grumpy and doesn’t make any effort to finish the conversation they’re having with their colleague to deal with you, they really shouldn’t be working somewhere where a lot of people are going to be walking through the doors feeling anxious and apprehensive in the first place. Also, they only work in the emergency department, the person visiting is clearly having a worse day than them since they’ve felt the need to turn up to A&E. So I don’t think it’s acceptable that the front facing patient staff be remotely rude, regardless of how calm and/or healthy they look.

She had to wait a while to see a doctor. 

Some people do have to wait. But heart attack should be right up there with ‘see now’. As should be my condition until I’ve been assessed properly. IE ‘this person could die until we know otherwise, let’s prioritise them’. Which means someone didn’t take her seriously at triage or they weren’t paying attention.

The doctor didn’t really take her seriously. Even before she had the tests.

She was made to feel like an inconvenience. The words ‘I’m pretty sure you’re not having a heart attack’ and ‘we’ll do the tests to reassure you’ were used. The ‘reassuring’ phrase annoys me. It basically means ‘we think you’re time wasting but you’re being a pain so I’ll do the test *because I have to*’ with an almost visible eye roll. But why? Do the people who actually don’t need to be there (twisted ankle) get given this patronising speech? I really hope they do. She was adamant she was right. Most people haven’t heard of my illness so if they haven’t pulled up my file and read my notes, they often think I’m being dramatic when I say ‘if I vomit I could die’.

The tests came back ‘fine’ and they still ignored her.

Treat and street. Lovely phrase. They didn’t look deep enough and weren’t bothered in trying to find out.

They blamed it on psychological problems like anxiety and stress.

Some people do have panic attacks rather than heart attacks. But if you patronisingly tell someone that what they feel isn’t real, it’s never going to help! A panic attack is still a medical condition. It’s not anywhere near as serious as a heart attack, clearly, but if you’ve never had either, how would you know? There’s a way of doing it and saying ‘you need to relax, it’s all in your head not physical’ is going to get the person’s back up every time. Mostly because the words ‘all in you head’ have been used. And what if it is all in their head? It’s still a problem. They’re still scared. And dropping a patient like a hot potato and pushing them out the door is going to make them feel even more scared and bewildered about what happened. And embarrassed.

But what if the doctors are wrong? And they’ve just told you they’re not going to help you anymore?

This has happened to me a lot. I’ve been stood crying at a nurse’s station on more than one occasion saying ‘I feel like I’m dying’ and no one would take me seriously. So I’d leave because I had no other choice and go back 2 days later with the same thing. Maybe I’d catch better staff on duty. Maybe I wouldn’t and get told it’s all in my head. Nope, turns out I have a life threatening, very time sensitive illness and it’s mostly fluke I didn’t die on all of those occasions. Fine, it’s a very tricky to diagnose illness, but it’s still not the point. A simple blood test would have set wheels in motion if someone had thought outside the box a bit.

Dr Bailey was having a heart attack. And the time it took for them to actually realise this meant that damage could have been done to her heart. Why didn’t they listen?

They blamed it on the menopause and the fact that she’s a woman.

Yes, those things come into play sometimes. However, women are often taken less seriously when they start to get angry or anxious because they have hormones which make them emotional. But if they present themselves calmly at the desk like Dr Bailey did and how I usually do, we’re not taken seriously because we ‘don’t look sick’. Can’t win.

They didn’t listen.

Bodies are weird things. There have been a fair few times where I’ve turned up to A&E not necessarily feeling any more terrible than I did before I went but because I had a feeling that ‘things were not going to end well’. And things usually escalated quite quickly after that. One time I rang my nurse who told me I was being silly and not to go to A&E and I should ‘take some deep breaths’. I decided she was wrong and called an ambulance and said I had a bad feeling to the crew. Thankfully the crew had a paramedic who knew me and said ‘she’s normally right actually, we’re taking her to A&E’ where a consultant very scathingly said ‘she’s not that sick, she’s sitting up and talking. Do a random cortisol test to reassure her and send her home’. That cortisol test came back as ‘undetectable’ and a different doctor admitted me and said if I hadn’t come in when I’d come in I could have been in a coma or dead pretty fast. Sometimes, you just know you’re in danger and have a feeling of impending doom. You can look at all the charts and lab ranges and machine results all you want, but maybe if someone is saying they don’t feel right it’s something that’s being missed by the doctor rather than the patient exaggerating or lying. Maybe it’s not and people are time wasting, but is it worth risking someone dying for the sake of an hour or two trying to suss it out?

So what did I learn from Grey’s Anatomy? I always assumed I was the problem when going to hospital, because I quite regularly have to argue, complain, ask for the consultant on call, produce lots of bits of paper backing up what I’m saying and be quite forceful with people all when I’m already feeling ill, feeling anxious and have an illness where stress can kill me. I don’t go in demanding attention and being bolshy, I start off calm and polite. While Dr Bailey isn’t a person, her character is a doctor and she had a similar experience to me. She knew her stuff and she still had to argue. It might have been fictional, but it really helped me feel less responsible and less like I was doing something wrong in the way I encountered people! Some people just aren’t very good at dealing with the patients in medicine, even if they’re good with the science.


I’m well aware that this post could encourage comments about the NHS crisis, how the staff are overworked etc, but I’m talking about experiences which have occurred more than once and repeatedly, in different hospitals. So some of the things I describe aren’t just down to overworked, underpaid and exhausted staff, bits of it, at least, must be partly due to a working culture that has appeared in the NHS. I’ve also received excellent care (and I write about that too!).

Occupational Therapy

When I gained my newest endo, he was the first person to actually think about me as an entire person, not just a walking set of illnesses and symptoms that needed treating. He realised that me waiting around for tests and trying different treatments and being bounced from doctor to doctor in various hospitals was doing nothing for my mental health, self esteem and physical health, so he got me an appointment with the Occupational Therapy department at the same hospital.

I already have physio in the same department (albeit different Hospital) and I’ve been to occupational health when I was still working, but aside from knowing that OT helps with ‘every day’ stuff, I didn’t really know what to expect. But I was quite keen to go because I like to be proactive and if there was something I should be doing to help myself daily, I wanted to do it.

I’ve been going for about a year now, every 3 months. To start off with, I had to fill in a questionnaire about my levels of activities, health, mental health, and perception of my illness, which we revisit every now and then. The therapist was lovely and said that she usually only dealt with people who had a diagnosis of Chronic Fatigue Syndrome /ME but my doctor wanted me to see her because there’s a lot of overlap between ME and adrenal insufficiency in terms of symptoms. It wasn’t going to do me any harm trying it, basically.

I got a bit of a shock when she asked me what I wanted to have some kind of control over or ‘say’ in my life. What did I want to be able to do that I currently couldn’t? No one really asked me that the past few years, it’s been more a case of ‘dont do that’ and very little attention paid to my quality of life. So I said I wanted to work on building up my tolerance to walking, because I could only walk about 30 seconds before I felt like I was going to pass out and things start to get fuzzy.

Since then, I’ve not been overly successful on the increasing my tolerance to walking but it has increased, just not to the level we’d have hoped so far. But she’s also helped me with things like pacing, sleep and concentration. To be honest, she said I was doing an awful lot of the stuff she’d recommend anyway, and that I’m pretty much a model patient (gold star for me!), but it was actually really good from a mental health and self esteem point of view for someone to actually tell me this. I’ve been doing the best I can for my health and someone was actually acknowledging it! I actually needed that reassurance.

The last time I went to her, I’d been feeling pretty fed up because I felt like I was losing more independence rather than gaining it. I was down to washing twice a week and only when my husband helped me. I wasn’t really getting dressed because I had no energy. I was sleeping a lot and not really going anywhere and I kept ending up in Hospital. I told her that psychologically, if I could do a couple of basic things for myself then I might feel better, but my husband was having to work a lot, and because I rely on him for washing, eating, doing jobs in the house, going places, pushing the wheelchair (which we bought) … pretty much everything, I was getting pretty depressed. It was also getting dangerous because I wasn’t able to make myself food so hypos and low cortisol episodes were happening a lot.

Then she started asking me questions- if I had x would this help me? I was a bit confused and said ‘what, like equipment?’ And she said yes.

It never occurred to me that there might be things that could help me at home that the nhs could provide. I always assumed that it was for old people. She talked me through all the various options and we decided that a shower stool and a perching stool for the kitchen might help me get some independence back.

Now I can choose when I wash. Seems like a basic thing right? But mentally it’s so much more empowering being able to decide when to be clean, not relying on someone else. I’m still limited- I can’t do it every day, I have to have a nap beforehand and a snack and it has to fit in with my schedule around my illness but it’s still way more choice than before. And the perching stool for the kitchen means I don’t have to stand when I’m trying to prepare food. It makes it a bit safer, since standing and heat are guaranteed triggers for me. Again, I’m still limited- I only really make soup and put salad in a bowl but it’s still more of a choice than I had before. Choice over simple things, I’ve discovered, is a fundamental right, and I’m actually a bit cross at all the other HCPs I’ve come across who I’ve told these kind of difficulties to in the past and just ignored me- I was still alive, therefore who cares about how I feel about my independence?

It was actually a quick turn around as well. Within 2 weeks of the appointment, the stuff had been delivered. I don’t know if it’s because I’m a young person so I got overlooked in the first place but it’s definitely worth finding out if there are things that the nhs can provide you with to help if you’re in the same situation as me. I was never told anything so I didn’t think I was eligible. But it’s made a lot of difference!

‘Your Illness Doesn’t Define You’

Yeah, except mine kind of does. I think this phrase gets said a lot mostly by non-disabled/ill people about disabled/ill people- ‘your illness doesn’t have to define you’. Or it’s said by disabled people who are trying to be uplifting or ‘preach’ about being positive with chronic illness. I find it annoying when people say it to me. Firstly, I never said my illness defines me, someone else is telling me. Secondly, someone else is telling me how I should think and feel about MY illness. That’s just weird and wrong. Thirdly, what defines us as people anyway? Our actions? Our identity? Our personality?

My illness dictates most of my life. It decided I wasn’t fit to work. It limits my activities because I can’t walk far. It stopped me driving. It decides when and what I eat, when and how long I sleep for. It changes my mood and personality in a way that no amount of CBT or mindfulness will help. It made me put on so much weight I don’t look the same anymore. It means I can’t make my own meals, do the jobs around the house, make decisions for myself easily… So what part of my illness doesn’t define me? *It* chooses how I live my life, not me.

Part of the problem is that there are many illnesses which are common place which don’t impact on daily living. It’s not common place to have a debilitating illness, which is why most people struggle to relate to someone who does have one. Something like asthma or IBS or migraines might cause flares every so often, lots of people have them, but they don’t define people. For example, when I was asthmatic, and just asthmatic (before all my endocrine things), I would have said my illness didn’t define me. Even when it was uncontrolled and I was struggling to do a lot of things, I wouldn’t have said it defined me. I still had an element of choice over my hobbies and activities. I could manage it with inhalers. I was still ‘me’ personality wise. Or if you have a temporary illness, or one which relapses and comes back, you might be able to say your illness doesn’t define you. Because at some point, ‘you’ will come back again. But when you’re permanently altered because of your illness, it kind of does define you. It has to, because it completely changes you. And rather being told perhaps slightly patronisingly not to let something ‘define’ you, other people need to be ok with it too.

It might be considered to be an uplifting phrase. The person is trying to tell the person with the illness that there’s more to them than their illness. But when you’ve been diagnosed with something which has horrible symptoms, which you feel like is taking over your life and you’re already incredibly paranoid and stressed about trying to manage everything, hearing the phrase just makes everything so much worse. Am I talking too much about it? Should I not ask for help if I need it? Do they hate me because I’m sick? Are they trying to tell me that I should just get a grip and get on with it? None of these might be true, it could be said with good intentions, but in the same way mums don’t like hearing other mums say things like ‘my son has really good table manners’ when their own child is mashing banana into their hair, chronically ill people get a complex too when people comment on their (drastically altered because of their illness) personality. The child having good table manners might be a fact, and the mum might be saying it perfectly innocently, but it’s sometimes hard to tell what’s genuine and what’s a dig if you’re already feeling overwhelmed.

I reckon part of it is that the phrase is a phrase that people have heard other people say and it just ‘comes out’. You also see incredible things people manage to achieve despite chronic illness so other people naively think that anything is possible even with chronic illness. But some people can’t do those things regardless of how much drive and determination they have. For example, I would love to do the three peaks challenge to raise awareness for adrenal diseases. Some people from the Pituitary Foundation did that last year. Great for them- their illness is in a place where they can physically achieve those things. They might feel crap afterwards and need days to recover, but they could achieve it. I’d be irresponsible if I tried it- I’d probably need a helicopter and a trip to the nearest ressus department. So I’m not letting my illness define me by not doing that fundraising along with other people who share my illness, I’m choosing not to be an idiot and save the NHS and the air ambulance a lot of money.

That said, my illness isn’t the only part to me. It controls a lot, but it’s not the only thing I talk about, and I think that’s important and the only time this phrase makes sense. I’m obviously going to talk about it because it’s a massive part of my life. But it’s not the first thing I mention when I meet new people. I tend to only talk about it to strangers if it comes up organically in conversation or if I’m asked specifically about it. I talk to my friends about it, but I also ask them stuff about their lives too. I would agree that there are some people who live their illness and that’s it- it’s all they talk about. Some people need that because it’s a way of processing the challenges they face, others perhaps enjoy the attention they receive from having an illness a bit too much and expect other people to cater to their every whim. Whichever way, perhaps those people need to realise that while your illness can control your life, if you can still talk, read, watch TV or do any type of hobby, there’s something that your illness doesn’t have to butt its annoying head into. But they still won’t like to be told (or likely won’t listen to someone say) ‘your illness doesn’t define you’ 😉


Low Carb High Fat – Take 2

I’ve been following Low Carb High Fat (LCHF) diet for about a year as best as I can. It always gets a bit skewed immediately after I’ve been in hospital, because the food they feed me there isn’t remotely low carb at all, and there doesn’t seem to be a diabetic meal (that’s a rant for a different day). But I’ve basically been making it up myself because the dieticians don’t really know what to do with me because of my insulin resistance and reactive hypoglycaemia and some other so far undiagnosed quirks with my blood sugar. So I was eating about 80g of carb a day based on my own research, one of my endos put it up to 100g of carb a day and now my latest endo told me to aim for 60g of carb a day. The reasons I’m on this diet are:

  • I have issues with my insulin production and have hypos. Hypos, in my case, are caused when I eat too many carbs (or other trigger foods) and my blood sugar drops too quickly. If I avoid eating carbs then I can hopefully avoid the peaks and troughs with my blood sugar.
  • To help with weight loss. Taking steroids automatically makes you put on weight, but it also makes it incredibly difficult for the body to break down carbs and it stores them instead, making it virtually impossible to lose weight/not put on weight while eating carbs. Weight loss in an endocrine patient doesn’t work the same way as weight loss in other people e.g. fewer calories in still doesn’t make you lose weight.
  • I’m trying to slow down getting diabetes. I’ll probably end up with diabetes, but slowing it down would be good.

This is the lowest it’s been, and it hasn’t been as difficult as I thought it would be to limit it to 60g of carbs. Grams of carb isn’t the same as grams of food. If you look on the back of the packet, it’ll tell you how many grams of carb there are, just like it tells you how many calories or how much fat there is. But you have to be careful because total grams of carbs and net carbs are different things. Net carbs is where you subtract the fibre from the total carbs, but I’m not doing that because it requires waayyyyy too much maths, and most UK packaging tells me total carbs. Therefore, I’m on 60g of *total* carbs per day.

What does that look like? The average person eats about 260g of carb per day. Here are some foods and carbs for some context:

  • a slice of bread- 18g
  • 2 carrots – 10g
  • apple- 14g
  • mcdonalds milkshake- 60g ish
  • Cadbury’s Creme egg- 36g
  • bowl of cereal- 30-40g depending on what it is and how much you eat
  • a slice of cake- 30-40g ish
  • grilled chicken- 0g
  • most cheese- 0g

Even ‘healthy’ foods like carrots and apples have carbs in. And you have to be careful about things like sauces which have hidden carbs in e.g. sugar or flour as thickener. Mealtimes basically involve a lot of maths and weighing things. On 80-100g of carb per day, it didn’t really matter if I got it a bit wrong but every carb counts on 60g. So what do I eat?

  • a small portion of porridge for breakfast with a spoonful of nutella (my one treat for the day, and yes, I know it’s not low carb!!)- 21g of carb
  • soup for lunch. I have to be careful which ones though because vegetable soup sounds healthy, but can have up to 20g of carb in it. I aim for 10g max at lunchtime
  • Something meat or fish based for tea. Meat has very few carbs, if any. So I aim for 10g-12g for dinner including vegetables like broccoli, cauliflower, peas, squash, peppers… vegetables which grow above the ground tend to have fewer carbs in than veg grown below.
  • Snacks are things like meat, cheese, salad, oatcake (one a day), olives, natural yoghurt, nuts.
  • no alcohol, sugar free squash, no sugar in my cup of tea, no drinks with sugar in

The thing about LCHF is you aim to eat minimal carbs, medium protein and high good fats. The tricky thing for me is that I need to eat little and often because of my reactive hypoglycaemia, which means that some days I need to take on more fat and protein than others, which proves a challenge with both managing my blood sugar and trying to lose weight. And if I have a hypo, I need to eat carbs, full stop. It gets even more challenging still when you add in the fact that steroids make you ridiculously hungry all of the time. Hunger from steroids I can ignore- it takes a lot of will power, but I can do it. It’s when it starts triggering blood sugar/cortisol problems that I need to eat. Which basically means I spend most of my life starving hungry and only eat when I physiologically need to eat. And then when I do eat, my food choices are limited because of the medical diet I follow. Which, I’m not going to lie, leads to a pretty miserable existence if I let it get to me. Particularly as steroids make you crave carbs, and I can’t eat them. And having hormone problems is basically like having permanent PMT, and all you want to do is eat pizza and chocolate and I can’t eat those either. I could make puddings with sweetener and alternatives to flour, but I’m pretty dubious about some of the chemicals which go into those.

It’s not worth having a cheat meal or cheat day because it makes me feel so ‘hungover’ afterwards and I feel so ill and take too long to recover from it. It basically feels like having flu and I struggle for days afterwards. Most of the time I get on with the diet quite happily because I’ve got used to it and I’m trying to think positively about it. It doesn’t bother me if people eat things I can’t eat in front of me, and I’ve got really strong willpower so I don’t cheat. But I do miss pizza…!

Why People Should Stop Trying to ‘Cure’ Illness

Something that drives me mad is the statistic ‘more people are getting/dying from cancer/diabetes/asthma <insert other illness>’ than ever before. No. More people are not ‘getting’ the illness or dying from it more than before, more people are being *diagnosed* with the illness than ever before because we actually have tests and scans which helps us to say what illnesses are. Rather than someone dropping dead from something unknown and it being given a random name like ‘consumption’, like it would have done in the past.  More people are also surviving other illnesses which would have previously killed people off so that when they get something like cancer, diabetes or asthma in old age, it goes down as them having died from that illness rather than a heart attack 15 years previously. People have to die at some point, we can’t cheat death forever.

Perhaps the title of this blog is a bit deceiving. I’m not saying that people should stop researching illnesses or treatments or even cures, if a cure is appropriate. But there are some reasons why putting energy (and money) into cures isn’t going to make much difference:

  • quality of life is just as important as quantity of life. This is something that people who are healthy sometimes struggle with- I know I did before I had a chronic, debilitating illness. But if someone said to me I could live for years poorly and in pain and not leaving the house or only a few years but live life to the full, I’d choose living life feeling as well as possible. So curing an illness to be left with a poor quality of life because of the side effects isn’t necessarily the best outcome.
  • lots of illnesses mutate or have different strains. Even if someone managed to eradicate one type, doesn’t mean there won’t be a variation which occurs in the same person further down the line. It’s not really a cure if it keeps coming back slightly altered, it’s just postponing it. It depends on how much suffering someone is willing to go through.
  • the cynic in me thinks pharmaceutical companies will never ‘let’ some illnesses be cured. Even if there was a cure, they’re not likely to hand it over because they make their money from people who are sick. No sick people = no money.

In a lot of cases, a cure for an illness would mean some kind of preventative medication in the first place. At the very least, an injection or a medication would have to be taken at some point for a cure to be in place for an illness, until we evolved to not have that particular illness in our DNA. It’s not like the illnesses people keep saying we’re ‘fighting for a cure for’ are contagious (like cancer), so they can’t be eradicated in the same way something like small pox was. And this is where you have to think about the attitude people have towards health and why sometimes a cure wouldn’t work.

  • If you told someone that something they did every day would likely give them cancer, a lot of people would take their chances and do it anyway and think ‘it won’t happen to me’. How many people still smoke or drink alcohol in excess? If people won’t make lifestyle changes which are proven to decrease risk of illness then there’s not a lot of point.
  • People aren’t very good at taking medications every day. I was in A&E resus with a guy who had pancreatitis and needed emergency surgery because he hadn’t taken his metformin because, in his words, he ‘couldn’t be bothered’. I keep seeing people say how they ‘don’t want to take medication for life’. So until people get over this mentality of medication being bad, there’s no point in making a cure for something if people aren’t going to take it every day.
  • What about injections/vaccinations? Again, people find excuses and do the ‘it won’t happen to me’ thing. A paramedic told me he wasn’t getting the flu jab because he didn’t want to feel ill for a couple of days afterwards and he didn’t trust whatever it was they put in it. If a paramedic won’t get a flu vaccine which actually protects vulnerable patients like me, then a non-medically knowledgable person would come up with an excuse too. And what about all the myths about MMR and the HPV vaccine floating around? Having taught year 8 girls, there are lots of parents who refuse to sign the consent form even though it could prevent girls getting cervical cancer.

Besides, all of those things still rely on people adopting something into their routine or relying on medical intervention. What we should be addressing first before we even think about cures for illnesses is people’s attitudes towards health. We will die at some point. Granted, old age is the aim game for pretty much everyone, but something has to kill us. So curing Alzheimers (unless you can cure the genetic aspect and stop the disease in the first place) is pointless because by the time someone has it, they’re usually old and will die soon anyway- their body is failing. Having watched my Grandma have Alzheimers for a decade, I would rather research was put into a treatment that had made her suffer less because it’s a horrible, slow progressing illness for both the person and their family to experience.

We will get sick. Illness happens. It’s the body’s way of signalling that something is wrong and we need to address it. And fighting an illness can make us more resilient to other things e.g. a bad cold when we’re younger could help us fight a worse cold later. If you cure the common cold, our body will have a horrendous shock if it ever gets flu- it won’t know what to do with it. Throwing up is the body’s instinct to eject something toxic from its system. We need ‘normal’ illnesses to fight the bigger illnesses.

The fact that people get sick gives us a sense of perspective. It proves we’re not invincible, and actually, being reminded of our mortality isn’t a bad thing. If we thought we were going to live forever, we wouldn’t have as much drive to achieve things or live our lives. It should also give us a bit of a kick to look after ourselves better. Some people have a mid-life crisis if they realise their dad had a heart attack at their age, or an awakening if they have a health scare, which encourages them to readdress aspects of their life e.g work life balance, family time, eating healthily, smoking habits. People already have the (wrong) idea that they can turn up to the doctors and they’ll be magically cured of normal illness like a stomach bug, or at least cured quicker, and that’s not how illness works. Eating unhealthily and being stressed constantly is like driving your car into a row of bollards every time you leave the car park and expecting it to keep functioning well. It’ll conk out eventually.

Most importantly, we need to stop saying we’re trying to cure some illnesses because life is about living now. People keep waiting for me to ‘get better’ so I can ‘carry on with my life’. Which makes me feel really crap about it to be honest, when I didn’t necessarily before. Am I less of a person or failing at life because I have an illness? No. Would I rather be healthy? Yes, but I can’t, so my version of healthy isn’t the same as the average person’s.  It doesn’t function at the same level as other people’s. Does that make my life not worth living? I don’t think so. A cure would be great, but it’s unlikely to happen in my lifetime. So I’m not going to sit around and wait for my former health to be restored, I’m going to make the best of what I’ve got. I might not have cancer, but I’m also more likely to die on a daily basis than someone who has got cancer, so the stakes are still the same. I just don’t get a prognosis with my diagnosis.

A cure for an illness is a bit like expecting to be paid without actually turning up for work. You have to put some effort in and manage your expectations. You can sit in a car but it won’t take you anywhere unless you take control over it and drive it. A cure would be great for so many illnesses which are horrible for the people who have them, particularly ones like cancer, but we also need to change about how we view illnesses for any cure to be truly affective. In the meantime, I would prefer to see better treatment plans for conditions so that symptom management and day to day quality of life improved.


‘It’s *just* your hormones’

This phrase annoys me two ways and they’re both the polar opposites of each other! It’s a phrase that gets batted around quite a lot as a way to ‘excuse’ women’s behaviour, in particular. But whichever way it’s used, it’s irritating. So it’s now one of the phrases I’d quite like to see eradicated.

Hormones control everything. I don’t think most people realise that all of your systems rely on hormones to make them work. Hormones tell the different bits of body to do things, they’re like messengers. Otherwise your body is just a bunch of post boxes without any mail getting delivered anywhere else. They zip around all day every day, even when you’re asleep. In fact, a lot happens when you’re asleep and you don’t even know it. It’s actually pretty miraculous that we wake up every day because so much has to work in the background while we were counting sheep.

There are some hormones you need to survive. Some you’d die if you didn’t have them- cortisol is one, insulin is another. Not your life would be more miserable or you’d have horrible symptoms. You’d actually die without them pretty fast. Which makes hormones pretty damn important since they’re all linked together. And if one goes a bit haywire, chances are this has a knock on effect on the others. But it’s a bit like spreading gossip or Chinese whispers- the messages get changed slightly as it goes through the system, or things change so that by the time the second message has got through, it’s too late to be effective. Hormones are tricky things.

Which is why I get really mad when someone says ‘it’s just your hormones’. It’s said in two ways:

1. To try to dismiss what you’re feeling.

In the same way saying ‘calm down’ never makes the receiver feel calmer, telling someone ‘it’s just their hormones’ when they’re distressed, or words to that effect is like lighting a match. Particularly if you shout it at them. In fact, if I am having a meltdown, shouting at me is about the worst thing you can do, because it makes the hormone imbalance worse. Someone who has a hormone imbalance isn’t necessarily physically able to produce the hormones that help other people rationalise, keep calm or let go of something. And when you’re feeling really unbalanced hormone-wise, you’re not just having mood swings, or being irritable or tearful, you’re also likely feeling paranoid, guilty, anxious and possibly suicidal. About what? Probably about something minute. But can you get your body to realise that? Not easily- it’s not a mental problem, it’s a chemical problem. So hearing things like ‘get a grip’, ‘just let it go’, ‘calm down’, or it’s ‘just your hormones’ makes you feel even more paranoid, tearful and stressed which adds to the problem. Even if it is something stupid to everyone else, a person with an imbalance can’t get a grip, and telling them so just makes it worse because you know you’re being ‘silly’ and you can’t do a thing about it.

I tend to have meltdowns at home and not in front of other people unless I get caught out. But because it’s not just people like me who will have this problem, pregnant women also have similar imbalances (although they get a bit more of a free pass), here’s what helps me when I’m in a cycle, so maybe it might help some other people.

I will be going round in circles- sorry about that. I’m usually so disorientated by whatever it is that’s stressing me out I won’t remember the start of the cycle so will keep going over it. And it will sound like blithering but it’s important that someone hears my concerns and takes them seriously. It might be stupid. But to me, it’s really not at that point and if you want me to stop having a meltdown, trying to snap me out of it actually takes longer! So listen to me. Write my main worries down or summarise them to me at the end so I can see I’ve been heard and you can repeat to me that we’ve been over it.

Do something that shows me I’m not pissing you off. I will be over sensitive to everything and read things into things which aren’t actually there or are just coincidence. But it’s harder for me to think that if you’ve given me a hug or made me a cup of tea or come and sat next to me.

The worst thing about having had a meltdown is not knowing what to do with myself afterwards. Hormones are working overdrive and it sets the whole thing off again if there’s nothing to bring me back down to normal. So I need a plan. It’s doesn’t have to involve you, but I need the next hour planned out so that I can follow it and feel in control. But I won’t be able to come up with something myself because I won’t be able to see the wood for the trees. So it might be ‘go get your crochet, what animal are you working on?’ Or ‘watch an episode of X and then have a bath. Do you need a magazine?’.

That being said, this brings me to the second way people use the phrase:

2. To excuse negative behaviour

Like I said, I try to reserve my meltdowns to home and not eat random people alive just because my hormones have gone a bit crazy. Although a poor British Gas man got my wrath one day! I try to walk away from as many situations as I can or just stop talking if I think I might be rude. Sometimes I get it wrong, but I’ll always apologise afterwards, which is more than can be said for some people who don’t have hormone problems!

So I find it annoying when some people use it as an excuse regularly. Whichever way you look at it, no one deserves to be treated like crap all the time, hormone problem or no hormone problem. Something like PMT or being stressed at work is not a reason, in my mind, to be rude to everyone you know for a week every month. PMT is like a fluffy rainbow unicorn and my illness a fire breathing dragon in comparison- if I can try hard to minimise my outbursts as much as possible (or at least apologise), then other people should try too!

Note how I said try. Everyone’s human and has a bad day. I’m not talking about people who have a bit of an off moment or who are going through a hard time, I’m talking about people who use ‘it’s my hormones’ constantly as an excuse for being rude.

So you can see, it’s a bit of a tricky phrase because using it as an excuse is annoying but said flippantly is also annoying. Maybe it’s the ‘just’ that it always comes with. I don’t know. But I do know that I will probably walk away quite sharpish if it’s said to me so I don’t end up punching the person who says it to me!

Going away for the weekend

What do you usually pack when going away for the weekend? Clothes? Toothbrush? Packing for a chronic illness is more complicated. I’ve always gone by the mentality that it’s better to be over-prepared than under, but I’m not actually packing over-the-top for going away- this is what’s recommended people with adrenal insufficiency have when they’re at home, so logic means that it’s even more useful when you’re in a different place from your GP and Hospital who know you. So here’s just my ‘medical’ stuff, before I even pack normal stuff:

That doesn’t include my meds bag and emergency injection I usually carry in my handbag anyway.

I always have a Hospital bag packed anyway with spare boxes of my medications, pjs, wash bag, phone charger, book, flip flops… pregnant women have one and they (usually) only go to Hospital once in 9 months. I tend to end up in Hospital 3-4 times in that period. So it makes sense. And if I take it with me when I go away, it saves having to find extra meds etc to take away.

Then I have a blood pressure machine (also does heart rate), thermometer and blood sugar testing kit. If I do have to go to Hospital, this is basically everything they do at triage and we’re encouraged to check these things regularly as patients with AI anyway. So I know what numbers mean I have to double or triple my HC and which ones mean I should be heading to Hospital. Basically, I can avoid going by doing my own obs and making adjustments myself for a little while, rather than thinking ‘I feel ill but not sure if I’m bad enough for Hospital ill’ and risk getting it wrong. Plus it’s useful to be able to say to people ‘these were my obs an hour ago’ as a benchmark.

All my daily pills are in a dossett box already so I obviously need to pack those. And I always take extra hydrocortisone with me in case I end up stuck away from home because of weather or something, or if I end up in Hospital (they never have it) or need to stress dose for some reason.

I have a medical alert tag with info on the back attached to my head rest in the car. If we’re in an accident, emergency response people need to know to give me drugs fast because otherwise I would die.

I need my sharps box for the lancets from my blood sugar testing kit and if I use my injection to dispose of the needles safely. I’m also taking more lancets and testing strips with me than I would for a normal day because I’m going to be doing more and eating different things from usual so will probably need to check it more regularly to keep on top of things. I don’t usually test it on days where I eat my ‘normal’ foods unless I feel weird.

One of the biggest reasons people have adrenal crisis is because they’re dehydrated, so rehydration sachets also make it into my luggage. When you’re away, you’re out of your normal routine so sometimes you get caught out and haven’t drunk enough. But drinking too much can also flush out electrolytes, which also causes crisis. So it’s important to make sure you’re not just replacing fluids. Plus if you get any sickness or an upset stomach, it helps with that too until you can get to a hospital. Failing that, I also have antisickness meds packed.

I tend to use more lidocaine patches when I’m away because I’m doing more so have worse pain.

I take these cards with me on a normal day, but they’re more important when you’re away from home. There are alerts and flags set up on my name in my local hospital and ambulance trust which help people know how to treat me. But these don’t work out of the county I live in, and, because it’s an unusual illness, it’s best not to risk being overlooked because someone is unaware of how time sensitive it is.

They just tell people what combinations of drugs to give me and what symptoms they should be looking out for. They’re useful if there isn’t an endo on call to advise. I also make sure I know where the nearest hospital is and whether or not it’s a major trauma centre ie are they likely to know what to do with me!

Weekend packing is relatively simple because you tend to be in the same country and you’ve only got to take a couple of days worth of stuff. And you don’t have to worry about baggage allowance! Packing for abroad or longer trips takes a bit more planning because sometimes you need to carry extra documents or ask your doctor for extra medications in plenty of time.

Don’t go out if you’re ill

…or at least think about it. I don’t mean if you’ve got a cold or feeling a bit run down, life carries on with those. I mean if you’ve had a stomach bug and aren’t 48 hours clear, have a temperature or have a chest infection which is still contagious.

A couple of days ago, I read someone on twitter complain that they’d had a stomach bug all night but were still planning a night out even though they still felt terrible. And how they were hoping they’d stop being sick by then. Followed by several emojis. Either they were being dramatic and it wasn’t a stomach bug or they’re being a tad selfish.

Just because you’re willing to go out and spread your germs about doesn’t mean the rest of us want to get them. You missing a night out because of a bug isn’t that big a deal, but passing your common, ‘normal’ illness onto other people can literally mean another person misses out on weeks or even months of their life while they try to recover.

If I got a stomach bug, I’d probably be put in intensive care. It takes me a minimum of 3 weeks to get over a basic cold (which I accept I will catch), never mind a chest infection. And then my immune system is so messed up I catch every little thing going round. Obviously I take precautions- lots of anti bacterial gel and I try to avoid close contact with others. But some places I can’t avoid and I also have to have a little bit of a life rather than living in some kind of safety bubble. If I’m going to catch a cold, I’ll catch it. I don’t, however, need to catch someone’s stomach bug.

Besides, it’s not just people with chronic illnesses like mine who don’t want to get sick because someone goes out when they know they’re contagious:

– pregnant women face additional risks by getting ill

– caretakers of chronically ill people- people with compromised immune systems

– cancer patients

– people who have small children

– elderly people

– people who look after the elderly

– people who work with patients

– or, how about no one wants to get ill just because you absolutely had to go on your night out.

So, if you’ve been throwing up all night, have the flu or something else really contagious, please think about how much of an impact you spreading your germs to people has on other people before you decide to head out. One night off for you could equal avoiding a lot of illness for someone else.

Being a musician who doesn’t play at Christmas

It’s weird having grown up with music being the focal point of Christmas for me and then not playing or singing at Christmas time. I didn’t have a ‘this is my last concert’ moment in any shape or form. I stuck it out for as long as I could. But the turning point was at a band rehearsal one Wednesday where I cried because I realised I was going to have to go to a&e because playing for a mere 10 minutes made me ill and I couldn’t keep doing it anymore. And that was it. It kind of just hit me at that moment and I’ve not played or sung with other people since.

I tried a bit at home for a while but it was really frustrating not being able to play for more than a few minutes at a time and being really, really bad at it. I would probably be better off learning a new instrument from scratch rather than trying to play one I already know how to play. Sometimes I play piano- if I play from muscle memory, I can still play most things except it physically hurts so I choose not to.

I’m not looking for people to help me solve the problem, I’m actually ok with the fact I can’t play or sing. Any form of playing causes me a lot of pain. I’m in constant pain anyway, and don’t have much more in terms of pain relief I can take, but playing/singing makes my diaphragm lock up so it gets so tight it makes it hard to breathe. Which then makes my rib cage lock up, which makes my back and ribs spasm, again making it hard to breathe. Bits of your neck are joined to your diaphragm, which means I get jaw pain and headache/migraines. I get all those pains just from talking too much and have to see a chiropractor twice a week as it is, so playing makes it a million times worse! The other thing with playing, even the piano, is physical movement hurts my joints but also having to hold yourself in a set position is something I really can’t manage for more than about 30 seconds.

So I’m ok with not playing because the level of pain involved usually involves IV HC and morphine of some description, which means Hospital. And it seems stupid to do something that makes me feel that ill when it could also potentially kill me.

This is the first year I haven’t felt like there’s a huge hole at Christmas. I’ve been getting much more out of being a spectator at concerts and listening to music than I ever did before- I still enjoy music and appreciate it in a different way, I’ve been feeling like that for a couple of years. But this is the first Christmas where I haven’t felt like a huge bit of me is missing. Music was the biggest thing in my life for 25 years- people feel sad for years at Christmas time about relationships which don’t even last that long- so it obviously still feels strange to not be involved in the Christmas preparations, but I don’t feel sad about it this year for the first time. And it’s only been 3 years, so that’s quite good going!

I’d love to play again if I’m able to- I miss the community feel, the feeling you get when you play, the challenge, the beautiful pieces… But for now I’m happy to listen and watch and appreciate the fact that if I do go back to playing, I’ll at least see everything differently and from a new perspective.