Standby 

I’ve got an ‘illness’ of some description, not sure what it is because the only symptom I have which is different from my normal symptoms (although they’re all now worse) is a headache. I usually feel sick, dizzy, tired, achey and worn out most of the time anyway, so it makes spotting ‘normal’ illness a bit tricky. Taking steroids every day weakens my immune system, so I’m already more prone to catching things when they go round, but, as I’ve written before, it takes me a long time to get over ‘normal’ illness than ‘normal’ people do. This is because the body would usually make a lot of cortisol to counteract the illness, which mine doesn’t. I can double my steroid dose but it kind of just puts my body into a weird standby mode rather than helping me fight it.

I guess it’s a bit like a computer. They have a bit of a strop by crashing or trying to open and close windows when they shouldn’t be and going into overdrive so the fan comes on to try and keep up with what you’re trying to do with it. And you’re sitting there looking at it thinking ‘Jesus, I only asked you to open up Firefox and google something, hardly calls for a meltdown like this’. That’s exactly what happened this week. Earlier last week I was operating really slowly, then on Friday morning I woke up and cried for an hour and had a big meltdown. For no reason at all. Then I slept all Friday and had another meltdown on Friday night. Then I crashed, so I double dosed.

While you’re looking at the computer thinking about how stupid it’s being, the antivirus scanner pops up and you think ‘oh right, that’s why, there’s stuff going on in the background’. Now, you can choose to pause it, but you know it’ll have to do it at some point, or you can wait it out, walk away and let it go into standby to do its thing. I can’t pause my illness, so I have to wait it out and go into standby. 

Sleeping in standby is weird. It’s not a restful sleep, I feel terrible and disorientated when I wake up. It’s different from needing a nap- it feels like I’ll die if I don’t sleep. It’s also one where I need people to wake me up every few hours to make sure I’m still alive (not joking), because if I need to take more medications, I might not actually be able to realise to wake myself up and do it, and could just deteriorate in my sleep. 

So in standby, my body is still running the antivirus. It’s not using as much energy, but it’s still using energy. It isn’t recovering or charging because I’m not giving it anymore power than before, because I’m not giving myself additional steroids while I sleep (hence the waking me up every now and then to check). When you’re sick, your body continues to make cortisol while you sleep, mine doesn’t. If I plugged myself into the mains and had a constant stream of cortisol, I’d maybe wake up feeling ‘topped up’ to the point of function I had before, in the same way a laptop does once it’s been charged. But I don’t have that option, so I go into standby and hope that I don’t run out of battery while my body does the antivirus checks. This is why we’re told to double dose, but it’s not an exact science.

So the last week or so I’ve slept between 15-18 hours out of 24 each day. The rest of the time I’ve mostly been lying down because sitting up is a bit like trying to play music in the background as well as running an antivirus. It’s a pretty miserable existence. And after tecovering from illness, i have the joys of tapering to my normal dose to contend with! Normal service should resume in about 3 weeks…*touch wood*

Getting the Facts Right

One of the most frustrating things I’ve come across with my Adrenal Insufficiency is Doctors not having heard of it and getting even basic facts wrong. I’m a reasonable person, so I don’t expect doctors to know everything about every illness, but I do feel that if they knew I was coming to see them, or they’ve met me before and are following up, a few of them would benefit from a bit of research about it to make all of our lives easier. I don’t know everything about it, it’s hard science. And I was hopeless at science: I wrote about ‘casanova’ in my GCSE physics instead of ‘supernova’ because I somehow got the two mixed up. I clearly ended up on one of those ‘what idiots write about in exams’ threads on Reddit! So I can only explain so much. But then the Doctor needs to actually go away and work out the science so they can treat me properly.

Things got better since I started seeing my new endo, but I ran into some issues today when one doctor referred me to a new consultant and inadvertently got it wrong. Here are some of the things I come across regularly:

  1. Getting my diagnosis completely wrong. Today the doctor (who knows me well) referred me to the consultant as having ‘an underactive adrenal gland’. Which is close, but not strictly true- my (current) diagnosis is Secondary Adrenal Insufficiency, which means that something else is making it so that my adrenal glands are underactive e.g. pituitary not making ACTH telling the adrenal glands to make cortisol, which is the common secondary problem. It doesn’t sound like a big difference, but if I’ve been sent to a new doctor to help me, it’s quite important they understand which bits of me don’t work, as it might help with their investigations. I’ve also been told I’m hypothyroid a lot (because people have heard of that one), which is also wrong. Or Hyperadrenal, which is the opposite of what I have.
  2. Some people think I can’t produce adrenaline. It’s because it’s got the word ‘adrenal’ in it, so I can see why they guess that. I can make adrenaline, and if you give me adrenaline rather than cortisol when I’m in crisis, you’ll just kill me quicker.
  3. Steroids= bad for everyone else, but good for me. I will die without steroids. I won’t be coming off steroids ever, unless something miraculous happens. Yes, they give me a whole host of bad side effects, but death by not taking them is the worst one. Yet lots of people have told me I need to taper and get off them.
  4. My Hydrocortisone mimics what cortisol production should be. Which is why I take it 3 times a day. Lots of people try to give me it in one go in the morning when I’m in hospital, which usually ends up in some kind of discussion and me having to translate my chart. Junior Doctors sometimes get my baseline wrong when they’re handing me over and try to blame me for miscommunication, which I find really annoying. Or I question the advice they’re giving me (because it’s wrong and not what the consultant said at ward round), insist they go ask their consultant and the junior doctor comes back and says ‘the consultant has changed his mind’. Which is sometimes the case, but it’s usually the junior doctor hasn’t understood what me or the consultant said in the first place.
  5. Timings are important. My dose times don’t tend to coincide with drug rounds, so nurses sometimes think I’m being awkward when I’m insisting on being given it immediately because it’s already 40 minutes late.
  6. Speed is also important. I need to be triaged pretty quickly in an emergency, but if people haven’t heard of it or I’m not at my home hospital, they sometimes don’t appreciate this.
  7. Stress dosing is an actual thing and not something I’ve made up. Lots of doctors don’t understand stress dosing. I’m pretty sure I have a little speech I rattle out now.
  8. Getting the maths right is important. If they get my baseline wrong, then that means their stress dose maths is going to be wrong. And you can’t miss a dose and try and make it up later, because it’s more complicated than that. There have been so many times when I’ve tried to point out that I’m 20mg out when someone has given it to me late and I can’t ‘just skip it and be given the next one’ like they’re telling me to because my Total Daily Dose will be out, which will cause more problems the following days. Add in if I’ve been given it IV or IM and it gets even harder.
  9. Low BP is characteristic of Adrenal Crisis, but some people have High BP in adrenal crisis/pre-crisis. I am one of those people. My BP comes down when you give me IV HC, it’s not the IV HC which is making it high.
  10. My Fight or Flight System doesn’t work. So having these conversations with some doctors who just won’t listen to what I’m saying can create an even bigger problem the the original one- confrontation drains cortisol fast. Arguing is knackering at the best of times, let alone when you’re feeling ill. Lots of doctors are great and say they’re not sure, but the ones who aren’t tend to argue back quite spectacularly.

The Doctor today was quite happy for me to explain my illness after she realised the referral might be wrong (it also said hypothyroid I think). But she still misunderstood some of it and I had to keep correcting her. Like I said, I’m not an unreasonable person and I was grateful she was taking the time to clarify rather than plough on regardless and potentially get it wrong. But it adds a whole different layer of stress about going to a doctor, and, because I have to explain things, a lot of the appointment can end up being me explaining my existing diagnosis, rather than getting help or being asked questions about potential new ones.

‘Therapy is good but make sure you have a life too’

Someone wrote that their doctor said this to them. And it resonated with me. When you’re chronically sick with multiple issues/symptoms, you get told to do a lot by various HCPs to help yourself, which is great. But it’s bloody knackering and you start to feel like you need to be constantly doing things to help yourself either because you’ve guilted yourself into it or someone who is healthy has- you’d be surprised how often people tell me what I ‘should’ be doing and how I ‘should’ be looking after myself. Which is ridiculous because the average person doesn’t look after their health 100% of the time, so why should someone with a chronic illness? People still smoke, drink alcohol, eat junk food and ignore their doctors all the time. So why do people with chronic illness feel compelled to always be ‘perfect’?

I think the feelings are further compounded when the illness is permanent and you’re not going to get better- it’s sometimes hard to see why exactly you’re bullying yourself every day to do things which aren’t going to cure anything. There’s no target except ‘keep going’. Here are some things I do every day, or at least most days, as part of my ‘therapy’ to help my illnesses, as per recommendations by people treating me:

– physio
– journaling/morning pages
– meditation and mindfulness
– medication 4 times a day
– eating at specific times
– following a specific diet
– getting enough rest
– keeping a baseline activity level
– avoiding triggers or ‘stressors’
– attending appointments
– keeping a record of meds, food eaten and symptoms to see if any patterns emerge
– keeping to and recording my fluid restriction
– recording and testing my BP, temperature and blood glucose results, if relevant
– CBT

Add in the things which happen most months but not daily but that have a significant impact on my life:
– preparing for tests/scans e.g. Withholding meds, fasting
– going for tests and to clinics
– tapering from stress dose to baseline after ‘normal’ illness
– keeping track of meds and when repeats need to be put in (they don’t occur at the same time and there’s about 15 of them)
– medication changes and any side effects
– liaising between hospital depts, my GP and pharmacy or asking someone to do it on my behalf
– making appointments for follow ups and continuous treatment

I’m not making this into a competition by listing my ‘therapies’, I’m using the list as an example for those who don’t have a chronic illness to illustrate my point. I’m not hunting for either ‘poor you’ or ‘you want to try having…’ comments. I personally find doing all my therapies all day every day exhausting at times, because, while beneficial, it makes me feel guilty if I take a day off from my diet and eat a dessert when out with friends or don’t do my physio because I’m tired and sore from having been out. Spontaneous activity is nigh on impossible which can make things a bit boring. If you’re a close friend, I will probably justify what I’m eating to you in particular, or ask if I need to worry about what I’m eating. Which sounds pathetic, but it’s because I’ve been conditioned to do everything I possibly can to help myself so I can’t be accused of ‘bringing my problems on myself’.

So you’re not just spending physical time on completing the necessary actions for your illness, it’s also the emotional energy spent on it which adds up. Combine that with the feelings you already have about what having a chronic illness has meant change-wise in your life and it can all get a bit much. I find it especially wearing because my illness isn’t well known, so it means having to explain it over and over to people, including medics, which adds a whole other layer and a lot of people telling me they don’t know what to do with me and that I know more than them. Trouble is, when your options are ‘do all of the above’ or ‘die’, you don’t have any option but to keep going even though all you want to do some days is dig your heels in and refuse to do any of it.

Burnout is starting to be a recognised thing and mechanisms are being put in place to support patients. When someone has a trauma or a diagnosis of a progressive or terminal illness, there is at least recognition that mental health needs to be looked after just as much as the physical symptoms and illness. But when you have something chronic, long term and permanent, there isn’t really anyone looking out for your mental health or helping you come to terms with it. It kind of feels like I’ve been left to my own devices and I’ve been bounced from different doctors. It’s only recently that a couple of them have started asking how I actually feel about it all and trying to address it.

I want to do all I can to help myself, for sure. My friends and my husband regularly tell me it’s ok to have a life and forget about what I ‘should’ be doing for a bit but I never fully believe them, there’s always a little part of me that still feels ridiculously guilty. So reading a random doctor saying ‘therapy is good but make sure you have a life too’ made me feel a bit relieved. I felt a little bit more that ‘it’s ok to break some of the rules some of the time’. I can’t explain why, but whoever that doctor is and whatever patient they said it to, they made my life a little bit easier by writing about it. Now I just need to remind myself of it!

Pet Names

Not like animal names. Like ‘terms of affection’ names. I personally don’t use pet names. I’m more likely to affectionately insult you than use a pet name. Even when teaching, I think I only called a pupil ‘mate’ once accompanied with a fist bump, and that was because he’d been tearful and was embarrassed and it was a joke to make him laugh.

Why am I writing this post? My friend chose the topic for today. I like writing about random things!

I’m also selective about who I ‘let’ call me pet names. The barman in the pub over the road from uni used to call me ‘petal’ and ‘flower’ (like he did with everyone) but I hated it so I called him it back. Then it kind of became a running joke. To me, people tend to fall into 3 categories when calling someone a pet name:

  1. They’re a nice human being and that’s how they show their relationship with you.
  2. They’re pretending to be a nice human being or want onlookers to think that they’re a nice human being. It’s fake basically, but the person doing it might not even realise the words are meaningless.
  3. They’re being derogatory or condescending and it’s meant as an insult or a way to manipulate people.

Lots of people use pet names all the time in conversations, I just personally don’t like using them. I don’t mind people who fall into category 1 calling me pet names, because it’s a genuine encounter. It’s 2 and 3 that make me feel uneasy. Chances are, if the person falls into 2 or 3, I’d be distancing myself from them anyway though!

My favourite pet name I’ve been called, besides my friendly joking with the barman, was when I was in hospital in France. I was the youngest on the ward by about 50 years and I was the only English person. They also had massive pronunciation issues calling me by my surname and couldn’t just refer to me as ‘Madame’ because I wasn’t old enough. France is quite formal in that respect, or at least these nurses were, and they weren’t happy calling me by my first name even though I said it was fine. So I was nicknamed ‘la petite anglaise’. Quite how that was better or more ‘proper’ than using my first name I don’t know, but it made us laugh. It also reassured the old lady, who had dementia, who I was sharing a room with that me and my Dad weren’t talking some devil’s language she couldn’t understand and trying to conspire against her, as she had frequent reminders that I was foreign whenever nurses came in. My Dad doesn’t speak any French so had to mime everything to the nurses when I went down for my operation, which really upset the poor old lady!

So there you go, a post on pet names!

 

Being Called ‘a Burden on the NHS’

I was scrolling through Twitter yesterday and came across a thread where people were ‘discussing’ the NHS and whether certain taxes should be increased to help with the current crisis. I say discussing in inverted commas because I was horrified by the attitude of some people. There were the typical ignorant, racist trolls who were commenting on the fact that ‘foreigners use it for free’ and being derogatory, but there were some comments about how only people who contribute to it should be allowed to use it for free, because it’s ‘all the people on benefits who don’t contribute and get to use it for free costing the rest of us money and being a burden’ (paraphrase) and ‘the people on the dole who just spend their money on fags and booze who waste the NHS’- again a paraphrase, but an opinion that came up a lot.

Wow. I thought about getting involved, but decided against it because I wouldn’t be able to argue my point eloquently in the limited number of characters, it would stress me out and I doubted I’d actually be able to change people’s opinions on social media. But wow.

I currently don’t pay into the NHS. But I use it a lot, and I use it more than the average person in the UK. Does that mean I shouldn’t be allowed to use it for free? I used to work and I used to pay a reasonable amount of taxes, but I can no longer work because my poor health prevents me from being able to. I had a rant at my husband about this point and he said ‘that’s different though’. How is it different? If you want to apply this principle to the NHS, unless you go through every single person’s individual circumstances to decide it’s different, wasting more time and money, how would you possibly be able to decide who should have free healthcare because they’ve contributed enough to the NHS and who shouldn’t?

You can’t. Unless we become like other countries and have insurance. That’s the great thing about the NHS, it treats anyone and everyone regardless of circumstance, ability to pay or illness. We’re lucky to never be in a situation (at least for now) where we have to decide if we can afford potentially life-saving treatment because we have the NHS.

I can still hear some people saying ‘but there are people who don’t pay into it who abuse it’. Yes, but there are also a lot of people who do pay into it, have the attitude that they’ve ‘paid their taxes so are entitled’ and rock up to A&E with a cold demanding to be seen. And where do you draw the line? If it’s about people contributing to it and being responsible for their health, what’s the criteria? What about babies or children? Children aren’t directly paying into the NHS but they’re still allowed free healthcare even though their parents don’t pay double taxes to cover them. Or pregnant women who require treatment for their baby before their baby’s born- their baby doesn’t exist yet as a person outside of their womb technically. Who should be paying for that? I doubt anyone would challenge a child or pregnant woman’s right to free healthcare because it’s obvious that they should be allowed to access it for free. Or people who smoke lots and then get lung cancer- should they get free treatment even though they knew that smoking was bad for them? How about all the drunk people before Christmas who end up in A&E because they couldn’t work out their own alcohol limits?

If we were all statistics or algorithms, then you could discriminate between who deserves what in a ‘fair’ way. But it wouldn’t be fair, because we’re humans. And what’s fair based on statistics is not necessarily fair in terms of what the right thing to do is. Humans get sick and make silly mistakes like getting drunk to the point of needing hospital. They shouldn’t be penalised because they’re human and act like humans. That’s why the NHS is free for people to access. Healthcare Professionals are supposed to treat and help people, not be given ultimate power of God and decide who lives and dies based on financial reasons. And what’s the point in a healthcare system where the only people who could use it for free are potentially the healthiest people because they’re working and making contributions to it? From a business point of view, without the sick people using it, the system would go bust. The people who need it the most are children, the chronically ill and the elderly, all of whom aren’t necessarily paying taxes.

The NHS is free for us to use as patients but it obviously costs money. I can understand where people are coming from when they say it needs to be respected and used appropriately so as not to waste money, but that goes for everyone- just because you pay into it doesn’t mean you have the right to misuse it. And it really upset me to be called a ‘burden’ when I do everything possible to be a good patient and keep healthy. Having lived in a country where you have to pay for your healthcare, I know what it’s like to be thinking ‘can I afford this ambulance since ambulances aren’t covered in my health plan’. It’s not fun, so I’m obviously really grateful for the NHS!

Blue Monday

Today is Blue Monday, appaerently the most depressing day of the year for countries in the northern hemisphere. A quick google search tells me it was an expression coined by a travel company to try and work out statistically when people would be most likely to buy a holiday, and it’s been decided that today is Blue Monday because of a calculation based on time since Christmas, money, motivation from having failed at resolutions, the weather and the fact that it feels a long time til the next holiday.

Most people will feel a bit flat around this time of year. Social lives are a bit slow after the rush of Christmas, money has run out, the gym or diet isn’t a novelty anymore and it’s raining. Easy to see why it’s called Blue Monday, even if it is made up.

My Blue Monday feels the same as any other Monday. I didn’t leave the house, I’m unemployed so I have no money, my physio and diet have been constantly in place for the past however long so I was bored of that ages ago and it’s raining. So you could say I’m lucky to have been spared the dip that comes with Blue Monday.

Or you could look at it a different way: when you’re chronically ill, you feel that flat feeling of Blue Monday that most people are experiencing just for today or this week, but every day. It’s really hard to motivate yourself to get up, get dressed and find something to do in the hours of free time you have isolated by yourself. Some people might be making plans for later on in the year as a way to compensate for the empty feeling they have today, but it’s hard to make long term plans when you’re permanently ill. And have no money. I bet a lot of people are flicking through their diaries looking for social engagements to look forward to, to give them a bit of a boost. The only things I have in my calendar this year so far are medical appointments. It’s also incredibly difficult to make spontaneous plans when you’re ill, which means if it’s not planned in advance, it’s probably not happening. So Blue Monday might be a bit blue for normal people but it’s especially blue for people who are isolated because of illness. 

Last week’s achievements include watching 4 seasons on Netflix. I think that’s a record even for me! If you’re chronically ill and got up and got dressed today, even if you went back to bed later on in the day, well done and have a gold star. And hopefully non-chronically ill people will be able to empathise with the feeling of lacking motivation for life a bit easier 🙂 

Under Vs Over Replacement

‘Under replacement in the short term is more dangerous than over replacement in the short term.’ This is the phrase that a very nice lady from an American charity for adrenal insufficiency keeps using on some forums that I follow. There’s been a lot of deaths the past couple of months due to under replacement during illness where people have got caught out, died in their sleep or, worse, gone to hospital and people haven’t taken them seriously and they’ve consequently died.

Usually I’m pretty practical about it and think I’m quite good at knowing what I’m doing, but, no matter how good I am at getting a feel for what I need to do, it’s still just a feeling- it’s literally guesswork. And, to be truthful, there were a couple of times last year where I did get it wrong and it’s partially fluke that I didn’t become one of those ‘got caught out’ death statistics. I’d be lying if I said that those experiences hadn’t scared me a bit.

So here’s my current thing. I think I have a cold. I say think because I don’t really have any cold symptoms yet except my throat feels a bit scratchy, my sinuses sore and my chest feels a bit heavy and I feel ‘weird’. Most people can say ‘I think I might be coming down with something’, I go one step further and my body gives me a bit of a warning that I think I think I might be coming down with something. So do I need to stress dose?

Pass. I have a gut feeling I do, but it’s just a feeling. My gut feeling is also telling me I don’t need a full stress dose at the moment. However, I’ve just been debating with my GP for the past 6 months about how she thinks my baseline is too high and I’m on too many steroids (my endo has backed me though). So my confidence is a bit skewed because she’s been drilling into me the negatives of being on high doses of steroids. But, respectfully, she also regularly tells me that I’m a special case and out of her expertise, which makes her stress dosing advice slightly unreliable. (I should point out I like my GP and she was looking after my best interests). So I go back to my mantra of ‘under replacement is worse than over replacement.’

It’s a pretty ridiculous situation to be in and wouldn’t happen for other illnesses. You wouldn’t say to a diabetic anymore ‘you’re not allowed your glucose metre, you have to guess what to do with your insulin and hope you get it right.’ Or if someone said to a doctor they thought they were having a heart attack, the doctor wouldn’t turn around and say ‘I’m not sure. I don’t want to overmedicate you. What do you think you should do?’ But I’ve got to work out a hormone level that keeps me alive, based on my symptoms and gut feelings and with very little input from medical professionals. Except hindsight is a wonderful thing and doctors are quite happy to tell me off for not stress dosing when I get it wrong. We all feel a lot of pressure as patients to get it right, which definitely does not help the phantom cortisol levels we’re trying to manage (stress makes it worse). I’m lucky I’ve got a friend to help me work it out.

So under replacement is worse than over replacement. Thankfully, my BP went up a lot yesterday to ‘the last time it was this high I called an ambulance’ stage. I have to say I was relieved. That, along with feeling way more dizzy than usual, meant I had a clear reason to double my last dose I’d taken at lunchtime. Now what do I do with my 5.30pm dose? Pass. I still felt weird and dizzy. It’s also hard to work out because because I had an extra dose only 3 hours ago and a lot of that would still be in my system. I hate maths. It’s like having a plant. If you water the plant every day at the same times and then notice it looks a bit dry so add some more water every now and then. The plant doesn’t drown but also doesn’t seem to thrive any more than it did before. You could say ‘it needed that extra water because it would have shrivelled up and died otherwise’ or ‘I’m not sure if it needed that extra water but it didn’t drown so maybe it did’. My BP could be good because I had the extra dose and it’s working, or it could be good because it was always going to be good anyway. Do I still need a double dose?

I got steroid guilt so I just had my normal dose. Plus having more HC in your system doesn’t actually make it last any longer, it just means you have more, and I’d already covered 5.30 anyway by having the later extra dose from lunch. So I decided to leave it a bit and add in an extra dose before bed if need be- I might not be awake at night but if I’m sick my body is still using cortisol up so it would need to be replaced. Everything still looked ok before bed. But I was still more dizzy, I had pins and needles in my feet and arms which I’ve only ever had when my baseline was too low and I felt really, really lethargic. I figured that if I genuinely hadn’t needed my double dose earlier, I would be more lively than I currently was, so I took another 5mg and went to bed. If I didn’t need it, I wouldn’t be able to sleep because of excess cortisol zipping around my system, if I did need it, I would be able to go to sleep. I crashed out within 10 minutes so clearly I needed it!

Some more maths and another game of ‘what shall I do with my steroids today?’. Here are some things you also have to take into account when working out your dosing:
– the doses have to start off higher in the morning and get lower as the day goes on. Mine didn’t yesterday because I only added the doubles after lunch. Which is ok as a one off but can cause problems if you do it a lot.
– some people can, but I definitely can’t just revert to my baseline after increasing my dose by 15mg the day before.
– i don’t think I need a full double dose remotely but I do think I need an increased dose.

Taking those three points into account, I’ve decided today that unless I have a clear, obvious reason to double everything like I feel really ill suddenly, a high BP or temp, I’m going to take 20/10/10 (total: 40mg) instead of my usual 15/10/5 (total: 30mg). Yesterday I had 15/10/10/5/5 (total: 45mg), which is perfectly fine as it’s just a different way of dosing called circadian dosing. I decided 20/10/10 because:
– the doses start off higher and get lower, so that works
– the total is a slight taper on yesterday by 5mg so that if I don’t need it anymore, I’m not over medicating. But I can always add in another 5mg again at lunch if things look a bit weird then and it still works.
– it’s not a full double dose so I’m not over medicating.

Most people when they have colds have to make the decision between blackcurrant lemsip or lemon. Or have to remember when they last took paracetamol. And their cold doesn’t have the potential to kill them. This is what I have to do when I get sick, as well as the actual being sick part. People who go to the doctors because they don’t know how to manage their cold need to be shot. And, I sound like I’ve got a plan, but it could all change quite quickly. If my temperature goes above 37.5, that’s time to double dose. If I vomit, that’s a double dose and potential injection. My asthma could make an appearance and I have to deal with that too. Or none of those happen and I need to work out a new plan for tomorrow so I can start getting back to my baseline.

Basically I’m playing it by ear and guessing. And I feel more terrible than usual because I have a cold, which makes it harder to work out. I’m writing this blog because it’s helped me feel calmer about the choices I’ve made, it eases some of the pressure I feel and the more people who understand, the easier it is for me if I’m out with you, need to change my dose and start quoting numbers ;). I hate the steroid guilt that comes with making decisions, even if I can justify them. Under replacement is worse than over replacement…

Low Carb High Fat Diet

I love food. It’s pretty much the only thing I can do socially at the moment. Culturally, we now associate the word ‘diet’ to mean ‘weight loss’, rather than ‘what we regularly eat’. I’m not dieting, I’m trying to find a diet that works for me because I have endocrine disorders which make me feel terrible most of the time, and how I fuel my body is especially important. If I also lose weight, that will help those conditions, so it’s also something to bear in mind, but it’s not the sole reason for me doing it. The main purposes are to try to control my insulin resistance and to slow down diabetes.

I’ve tried various combinations of things: Low GI, Low sugar, Low fat, Low GL – I’ve tried pretty much most things with the word ‘low’ at the start. After seeing 2 dieticians and a lot of food diaries later, I gave up trying to follow other people’s diets and kind of made my own one up. I then got sent to a third, diabetes dietician, mostly because the other ones didn’t know what to do with me. She mentioned ‘grams of carb’ and ‘low carb’ a lot, so I thought I’d look into it, and found that a lot of diabetic patients have seen vast improvements with the Low Carb High Fat Diet. I did some research and I realised that grams of carb isn’t the same as grams of food. You take out carbs, but you don’t take out healthy fats, calories and protein, if anything you increase them. Which went against the grain of most other diets, but I thought it was worth a shot.

Diets can be miserable things because they limit the food you eat and you have to have good willpower. But if it’s for weight loss, you can usually visibly see the effects which makes it more worth while. Medical diets are worse, because, with mine anyway, I’ve had to do them and not felt any better while doing them and there’s no physical change I can see. I just ‘might be slowing down diabetes and helping my insulin resistance’. Low Carb High Fat is good so far because you’re actually still eating real food for the most part. Things taste nice! Eating low gi was the worst because it was like eating tree bark or dust. Going out to eat is not as hard work.

The average person eats about 260g of carb a day. For reference, a Pizza Express pizza has at least 100g of carb by itself. I was eating waaaaay more than that to try to stop myself from passing out- but it’s a cycle: the more carbs I gave my body, the more it needed because it doesn’t mobilise insulin properly, so the quantity just kept getting higher. I’ve been phasing out the carbs and I’m now on 80-90g of carb per day, and I think that’s where I’ll stick to. Most people who cut out carbs have flu like symptoms to start with, but because my body is really sensitive to change, it would be a bad idea to just cut them straight out, I’d end up in hospital, hence the gradual introduction of the diet. I did have a really bad headache and felt sick for some days but, to be honest, I feel flu-like most of the time anyway, and I only noticed the headache because that’s one symptom I don’t get very often! I don’t want to go any lower than that for lots of reasons, I think I’ve got a good balance where I am. It does involve a fair bit of maths and forward planning, but I’ve got an app (and a husband) which helps me with that.

If you’re thinking about cooking for me (thanks for the invitation!), it’s not a bad thing if I don’t eat low carb for one meal (the last dietician told me this a lot), and I’m not following a strict plan- I’m making it up. But avoiding things which are purely carb e.g pasta, pizza, rice dishes like risotto would really help me out 🙂 I’m quite good at balancing it myself, but meat, cheese and vegetables which grow above ground are lower carb foods. Ask me questions about it- if you fed me during low GI points, this is a lot more flexible! And I still eat pasta, rice and bread, so if that’s what we’re going to eat, let me know the day before and I’ll eat fewer carbs earlier on in the day so I can eat more of your lovely food 🙂

Anyway, here’s the interesting bit, photos of recipes we’ve been trying!


Ham and cheese rolls. I found this on ‘the stay at home chef’s’ blog, but not sure if it’s actually her recipe. Really easy to make and 8g of carb in each. Good for getting out of the freezer.


Raclette is surprisingly low carb, even though it’s high in fat. This is because meat and cheese have next to no carbs per 100g, like less than a gram.


Steak with a cream, spinach and mushroom sauce. This was gooooood. Taken from the lean in 15 red book. 6 carbs without rice.


This is a good snack. Carrots, cucumbers and cherry tomatoes with Philadelphia.


Prawn Thai green curry from the lean in 15 book. Pretty good! 13 carbs without rice


Cheesey chorizo chicken and spinach from lean in 15. This was really good and filling. The pine nuts meant that we didn’t actually need rice with it, it was filling enough by itself. 16 carbs without rice.


Egg, bacon and cheese muffins with pesto and spring onion. 5 muffins works out about 2g of carbs. These are good for snacking on and taste really good. I think this recipe is off a website I found called diet doctor.


Now these don’t look great, but they tasted amazing! We adapted a recipe from an Instagram user’s blog, Actually Low Carb (that’s the name). They’re bacon, Philadelphia and jalapeño poppers. Not very good for a snack because they’re not portable, but a good treat!


Philly jalapeño steak with mushrooms and spinach from lean in 15. I think this is my favourite so far. Tasted so good! 13g carb without rice.


Indian spiced lamb from lean in 15. I don’t really like lamb but I quite liked this. Not my favourite though. 10g carb without rice.


Chicken korma from lean in 15. This tasted like a takeaway which is always a good thing! 25g carb without rice, so a bit more heavy on the carb front.

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Peanut and chocolate bars. 3g per square. They’re really rich, so you don’t actually want to eat more than one in a go, and also have coconut oil as added fat. Taken from the Diet Doctor website (I think).

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Popeye Chicken from Lean in 15 book. Chicken. spinach and tomatoes with onion and cream sauce. 12g per carb without salad.

Rest & Sleep Days

I hate these days. If you’re healthy, you might think a day lounging round in your PJs watching Netflix sounds great, but to me, it’s a regular occurrence and stops me from doing even basic things I want to do. Even things like showering, for example.

I’ve given these names to these days myself. So a rest day is where I don’t do anything outside the house unless I absolutely have to (medical appointments being the only exception). I won’t have a shower, I’ll stay in my PJs and I’ll do as little as possible. I might write an easy blog on my phone (like this one, where I just type and little thought goes into it) or do something like colouring or knitting from time to time, but I spend most of the time lying down- sitting up activities are limited because sitting up requires energy. I’ll extend my afternoon nap and maybe have a nap in the morning as well, depending on how much of a rest day I need. This is how I spend most of my week. It’s boring but necessary. Over Christmas, I made the mistake in thinking I could talk while lying down on a rest day while my parents were here. Nope, talking was too much effort, so I needed a sleep day the next day. Today is a rest day because I went to three medical appointments yesterday and it was too much in one day- but it’s not too bad a day for a rest day :).

A sleep day, unsurprisingly, is where I sleep almost all day (like 21 hours out of 24). I pretty much get woken up for tablets and meals and maybe watch a little bit of TV. It’s not a ‘I’m tired, I think I’ll have a nap now’ kind of sleep, it’s a ‘if I don’t sleep right now I think I might die’ sleep. I basically pass out. My husband sometimes can shake me for minutes at a time trying to wake me up and I won’t wake up. For days when I’m by myself, I’ve now got an app on my phone which tells me when to take my tablets and alarms go off until I tell it i’ve take them, or it alerts my husband on his phone. Because my pills are really time sensitive and keep me alive, if I miss a dose because I’m not able to wake up, it’s actually pretty dangerous, so my husband would ring or come home to make sure I take them. Except I once went out with a friend and forgot to tell my phone that I’d had them, and my husband tried ringing me and my friend to make sure I was still alive…. oops!

Most days, I wake up and it takes me an hour to be able to sit up in bed, firstly because I can’t keep awake, secondly because I haven’t got the energy to be able to sit up. I’ve got lots of alarms for this bit too! Then I get up and sit at the top of the stairs for a rest before going down them, because I don’t have coordination on bad days and I can’t actually work out where the stairs are in relation to where I put my feet. If my husband’s there, I sometimes get him to walk in front of me to make sure I don’t fall down. Once I eventually get downstairs, I swallow my tablets (there are some in my bedroom in case I can’t get that far) and about 20 minutes later try to get breakfast. I really, really hate the process because it kind of feels like I died overnight and got revived, and I feel like I’ve been hit by a bus. The only thing which makes this whole process bearable is the fact that I’ve got a friend who gets up with her baby around the same time, so I usually talk to her via message. It always cheers me up no matter what I wake up feeling like. I have to get up and eat and have my medications by 8.30am at the latest, but once I’ve done that, I’ll go back to sleep until my next dose at 12.30 on a sleep day or I’ll lie down on the sofa and doze on a rest day. On ‘good’ days, I’ll do something like watch TV and colour or knit.

It feels a bit like I’m sleeping my life away, which is why I hate it so much, particularly at the moment as I seem to be going through a ‘what am I doing with my life?’ phase. (Answers on a postcard please). But, if I don’t sleep or rest when I need to, I could die (by way of adrenal crisis) because I haven’t been asleep or rested for enough time and I’ve run out of cortisol. No matter how hard you try, it’s incredibly difficult to live a fulfilling life from your living room in your PJs. It’s not an illness I’ll get better from, either, which makes it more tricky for me to deal with mentally- there’s no ‘end date’, just a vague ‘let’s hope we can get it stable so things might improve’. So on days when I’m alone by myself having to take forced rest, it’s really hard not to be critical and negative about yourself, which is exhausting in itself, let alone when you add it to the other symptoms. For most people, distracting yourself would be a coping mechanism, but I can’t distract myself on these days because it’d burn the energy I’m trying to conserve which is why I’m resting in the first place.

My chats with my friend via message, texting people, Netflix and social media are my lifeline. Or things I can do on my phone while lying down which don’t require too much brainpower. If I have to be cut off from the world physically, at least I can talk to people virtually while I’m doing it and don’t feel quite so isolated.

It’s time for my afternoon nap now 😉

30 Foods Before 30: Winter Update

For various reasons, I haven’t been able to get out and about as much to go to places which have some of the foods on my 30 foods before 30 list since my Autumn Update. However, I’ve been either cooking the more obscure ones at home (or my husband has) or asking a friend who’s a good cook to feed me! 🙂

1. Biscuits and gravy

2. Musakhan jajj

3. Freak shake As I said in my Autumn update, I don’t eat an awful lot of sugar now because I’m insulin resistant. But my husband and I shared a chocolate brownie oreo Freak Shake in December. This was actually one of the smaller ones on the menu, and we still couldn’t finish all of it! But it was really, really good!

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4. Wood ants I’m not looking forward to this one…

5. Lobster I had steak and lobster in a steak house.

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6. Khachapuri

7. Ceviche Texture was weird, but the taste was good!

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8. Kleftico

9. Nutella Krispy Kreme Many, many times…! So good!

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10. Raclette I’ve had lots of Racelette now. Here’s the most recent one at New Year:

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11. Afternoon tea While on holiday in Wales we had a lovely afternoon tea out.

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12. Tapas I’ve had Spanish and Italian Tapas since starting this list

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13. Alcoholic ice lollies We tried making these over Christmas, but lacked the alcohol to put in them…

14. ‘Proper’ loose leaf tea I’ve had this a couple of times, once at a friend’s house and also with afternoon tea

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15. Tartiflette I can’t believe I’ve not had this yet! We even have the cheese in the freezer ready to go! It’s become slightly more difficult with my latest diet, which rules out potatoes. I’ll make an exception for this though 😉

16. Dosas

17. Tagine My husband made this for tea one night. It was alright- something I’d eat, but not something I’d really look forward to having again. 

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18. Real steak Steak is now a regular feature in my diet. Here was last night’s one made by my husband: philly steak with mushrooms and spinach- it was really, really good!

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19. Gelato I’m happy to continue sampling flavours with this, despite it being ‘done’😉

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20. Pecan pie In an american smoke house- very, very good pie.

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21. Mississippi mud pie

22. Ice cream float Also in the smoke house, had this a couple of times now.

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22. Hot dog This was ‘alright’. I wouldn’t pick it again, but I can say I ate it!

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23. Octopus We had this as part of the tapas meal I had ages ago and it was ‘alright’. But then my friend (the one who’s the really good cook) made it for us as part of a meal we had before Christmas and it was really, really good.

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24. Thai food I’ve had a Thai Green Curry at a pub and at home and Thai Red Curry Mussels but haven’t eaten in a Thai restaurant. So this is kind of done, but not quite.

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25. Chowder

26. Mussels We had these this week on our anniversary meal out for our second wedding anniversary. They were also unlimited so we could eat lots of flavours. Korma and red thai curry were the best.

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27. Wood fired pizza I’m surprised I’ve not eaten this yet!

28. Churros I’ve had these a few times now, still really good, especially these ones with nutella and dulce de leche

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29. Jerk chicken This was an amazing meal out for my husband’s birthday.

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30. Sweet potato fries I’m still pretty obsessed with these- every meal that comes with the option of chips, I switch them for sweet potato fries if I can!

If you’re observant, I repeated the number 22 by mistake when I wrote my list so I’ve actually got 31 things, not 30. But I’m happy to eat one thing extra! So in my Autumn update I had 17 done, 1 nearly done and 13 not tried yet. Now I have 19 done, 1 nearly done and 11 not tried yet. I thought I’d done way better than that! I guess it’s because I ate slightly different versions of the things I’d already ticked off my list so it felt like I was ‘achieving’ more. I’d best get eating then….!

And if you want to come and eat wood ants with me *shudders*, or anything else on the list, let me know!

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