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!


I love the NHS but…

… we need to stop making ‘excuses’ for things that go wrong and stop putting it so much on a pedestal. Firstly, I’ll write some ‘disclaimers’ (for want of a better word). I do like the NHS, it keeps me alive and has stopped me dying many times. It also gives me free prescriptions, which I wouldn’t get elsewhere in the world, and it’s free for me to use, and I use it a lot. I’ve got several friends who work in the NHS in varying positions and all do great jobs, but they also point out problems with the system. The culture surrounding the NHS is changing, and while we can blame a lot on the government and the way it funds and manages it, some of the problems are being caused by our attitudes towards it. I’ve had some great care while being a user of the NHS, but *because* I use it so frequently and spend a lot of time sitting in different healthcare centres, I also have a slightly different insight into it than most people, so can see some of the flaws. By making excuses and saying the phrases below, we’re just adding to the problem.

I’ll probably refer to teaching a lot too in this post, but mostly because I used to be a teacher and we also had restrictions placed on us by the government, Not because I think teaching and the NHS are the same.

Staff are overworked and underpaid.

Staff are overworked, yes. They’re also probably not paid enough, also true. But why do we excuse slower or poorer services in the NHS when we don’t in other sectors? Would it be acceptable for a teacher to ignore a child all day and then say to them ‘sorry I was too busy to mark your book or talk to you today, I had other people to deal with’? No. So if you’re a patient on a ward and don’t get spoken to all day, why do we go ‘it’s ok, you’ve been busy’ when actually it’s not ok? Nothing will change if we don’t raise the problem. The government will just say that the NHS is fine because no one complains about it. You can still show empathy for the staff while expecting the service we’re entitled to.

It’s free, you should be grateful.

School is free. But people used to ring me up all the time if things weren’t right in their child’s education. And they were right to do so. You can be grateful for something but still expect good service.

Staff attitudes are changing.

This is something I’ver noticed a lot in the past year or so, coinciding with a rise in ‘save our NHS’ and similar news stories. Newer or younger members of NHS staff do not have the same working ethos as more experienced members of staff. A lot of things are not their ‘problem/fault’. I’m a very calm and polite patient, I show empathy. But here are some things I’ve been told as a patient:

  • ‘I’ve just picked up your chart. You’ve only just become my problem’. If your name is on my chart as the Doctor responsible for me, and you haven’t had time to come and see me, I’m still your ‘problem’. It’s down to you to make sure I don’t die on your watch. If I do, you are responsible, even if you were busy elsewhere. Someone has to be ‘responsible’ for my care. And also, how dare you call me a problem?
  • ‘I’m not doing that. My shift finished half an hour ago and I want to go home’. *said while thrusting a ‘talk to the hand’ hand in my face*. Ok, fair enough. But how do I know when your shift ends if you don’t tell me first? You answered my call button. Are you going to ask someone else to help me or did you just come to my bed to be rude to me and bitch about the fact you’re still here past your shift end?
  • ‘Can you not see we’re busy here? You need to stop asking me for your medication because I won’t do it any quicker’. I *can* see you’re busy, but unfortunately my life threatening, critical and time sensitive illness doesn’t care and making me wait an hour is not acceptable. If you don’t give me my medication soon, I’ll probably die, which is a bunch of extra paperwork and time and energy for you. So how about you stop moaning about the fact you’re busy and spend the 2 minute rant you just had tracking down my IV hydrocortisone.
  • ‘I hate it when we have patients like you turfed to our ward. They just expect us to be able to provide your meds and we never have them.’ Thank you for making me feel like a burden. Thank you for making me anxious about the next time I need help because you seem really grumpy. Thank you for not providing me with any reassurance because I’m back in hospital again and I’m pretty upset. And now you’re making me stress out about the fact that you don’t have my meds on the ward and you don’t like patients like me. It might be true and a problem with the system, but do you think you could maybe conceal your frustration from me? I’m having a crap day too.
  • ‘I can see you’re not going to listen to me so I don’t want to deal with you anymore’. This one was my favourite- she shouted this from outside my patient room and then punched the door in frustration. What had I done wrong? She’d got my medication list wrong so I corrected her. That’s it. Yeah it probably wasn’t anything to do with me, she was probably having a bad day. But that’s not fair to take it out on me.
  • Me: ‘If you don’t issue me with a repeat prescription, I will die within 48 hours,’ followed by a response of ‘you do what you have to do then, I’m not giving you it’. Effectively, this individual was telling me they’d rather see me die than go and check with a doctor that what I was saying was true. This stressed me out so much I ended up in hospital for 2 days.

I can’t tell you how many times I’ve been told ‘it’s not my fault you…’ by junior members of staff. Sorry, but if you’re speaking to me, you represent the NHS and you *are* responsible at that specific time. The least you can do is a token ‘I’m sorry you’ve been made to feel that way, what can I do now to sort it out?’, which is basically saying ‘it’s not my fault’ in nicer terms but at least shows me you care about me as a patient and want to help.

There are times when you do end up covering for stuff which is not your fault. Which you had nothing to do with. Or things which have gone horribly wrong. However, it is not professional to communicate that to patients. It would be the same as me slagging off another teacher to students- you think it in your head, but what comes out of your mouth has to be professional.

Yes, but the overworked staff are ‘saving lives’.

I get a bit tired of hearing this because you can save lives and still be professional and courteous about it. And, actually, if we’re being pedantic, most of the staff in the NHS aren’t directly saving lives, they’re doing preventative healthcare or maintenance healthcare. I ‘saved lives’ in the same respect as a teacher- I stopped several children from attempting suicide indirectly, I helped wean a couple of kids off energy drinks when they started damaging their health and I provided breakfast for vulnerable children out of my own back pocket.

They work really long hours.

Yes they do. But a nurse’s working week is the same hours technically as a teacher. And yes they work beyond their end time, but so do teachers (and many other sectors). And teachers do get 13 weeks holiday a year, but we work through a lot of those and spend a lot of time in school- NHS staff aren’t expected to turn up to work when they’re on holiday (unless they’re senior) but teachers are.

They don’t get paid enough.

No one in the public sector gets paid enough. Lots of people have been earning less the past few years because they’ve had no payrise/cost of living rise.

NHS staff get abuse thrown at them when things go wrong though, they don’t get paid enough to deal with that.

I was sworn at most days in teaching. Shop owners, call centre workers, traffic wardens all get abuse shouted at them. Sometimes people in those professions are also physically abused by service users. It’s not acceptable, but it happens. And have you seen the abuse local councils get on social media when someone’s dustbin doesn’t get collected one week? I used to say this to student teachers a lot- there is a difference between being sworn at in frustration and being verbally abused. Is the person swearing at you directly e.g. ‘you re a f****** b***’ or are they just swearing because they’re annoyed and scared e.g. ‘you need to f****** help me’. There’s a difference. And, to be honest, when I’ve been told that I’m a problem and made to feel like an inconvenience, I sometimes feel like swearing at people. But I don’t. So maybe everyone should think about the way they deal with each other? (granted, some people are just idiots and abuse even the nicest of NHS staff. That’s obviously not acceptable).

NHS staff go above and beyond.

Some definitely do, and I always make a point of thanking them and emailing their supervisor. E.g when someone makes a point of tracking down my very busy consultant even though he’s in a different hospital and they’ve got a perfectly good endo on site- that’s really good patient oriented care. But lots of industries have staff which go above and beyond, but because they’re not ‘saving lives’ people don’t acknowledge them the same way. The recent snow dramas made me think- lots of people were crediting the NHS staff for making it out in all weathers to help people, and they definitely went above and beyond. But what about farmers who went out in all weather to tend to livestock and crops to make sure our food supply wasn’t interrupted. Or AA and RAC people who rescued people from dangerous breakdowns when they got stranded- they were putting their lives in danger potentially doing that. Or people who maintain water and electricity supplies? But twitter was full of recognition for NHS staff and less so (if any) for other people and industries.

We should reward the staff who do a good job

Yes we should, but I keep hearing a lot of people giving NHS staff gifts for having treated them ‘amazingly’. But when you ask them what was amazing in the way they had their broken wrist treated, it tends to be because the staff were friendly and did their job e.g. you got an x-ray, a plaster cast and pain relief. Does that really deserve a thank you box of chocolates when that’s their job? No. If someone had worked on their father in the middle of a cardiac arrest and the father survived because of excellent team work and care from staff, yes that does deserve some kind of special credit. But rewarding someone for doing the bread and butter of their job means that it becomes expected, and if you’re already being paid to do a job, expecting additional rewards from patients for doing the basics is a bit much really.


Looking at it a different way now, there are amazing members of staff who are being let down by the system.

Younger members of staff don’t want to ask senior members of staff for help.

The problem with putting the NHS on a pedestal is it creates an awful lot of pressure for Junior members of staff to be brilliant at the medicine side of it all the time. And that means a lot are reluctant to ask for help or admit when they’re wrong. Which causes me a massive problem because I spend most of my time having to explain my rare illness, but some junior staff can’t and won’t admit when they’re out of their depth because they’ve been conditioned to act that way. And that definitely doesn’t help with the ‘it’s not my fault’ mentality. It could also be down to senior staff not wanting to/not having time to make time for their med students. You learn from your mistakes but it feels a lot like med students aren’t allowed to make mistakes.

It’s assumed that the patient always lies.

It was always the case to take some of what the patient was saying with a pinch of salt, because people do hide things and withhold things and do lie. But not everyone does, and there very definitely is an attitude that the patient lies and shouldn’t be trusted amongst less experienced members of staff. Again, this might come from more senior members of staff trying to speed the consultation process up, but new doctors don’t have the benefit of years of experience yet to determine what’s a lie and what’s not, so can’t and shouldn’t assume they know the patient is lying. It fosters distrust between patient and doctor and vice versa, so actually slows down the whole process overall.

It all comes down to money. 

Even the most amazing of staff can’t fix this one. Tests and scans cost a lot and the semi-/privatisation of the NHS only makes this worse- doctors are having to justify every test and patients are being told they can’t access treatment even though their doctor says they need it. So sometimes Doctors aren’t able to do their job properly because they’re blocked by red tape. But if we never complain and kick up a fuss because the NHS is overburdened and we can empathise, nothing will ever change.

I’m not saying we shouldn’t give credit where it is due for good work by NHS staff. I’m saying that by putting it on a pedestal, giving it free passes and making excuses when it doesn’t live up to expectations by saying one of the phrases above, and never complaining about it, we’re actually making more of a rod for our own backs. Nothing will change for staff or patients if people idolise the system and ignore all of its flaws. The system doesn’t work at the moment, because it was never supposed to cope with this level of demand but hasn’t been updated since its conception. It needs a complete overhaul, which won’t happen while the government can keep justifying sticking metaphorical gaffa tape over all of the holes in it at the moment. It might seem harsh to point out shortcomings when you can see the staff have worked hard on something, but you can easily write that in a complaint- acknowledge the staff who do well but question or criticise the service which went wrong.  If we don’t, nothing will change.

Cautiously Optimistic: Switching from Hydrocortisone to Dexamethasone

Or, in layman’s terms, ‘my endo took me off one type of steroid and put me on a different one’.

This actually happened at the start of January, but I wanted to give it a bit of time before I wrote a blog post about it because:

a) there’s always a honeymoon period with any new drug

b) it would have just been a stream of consciousness of my random opinions at that point in time and not necessarily of any use to anyone else

c) cortisol is a hormone, and HC/Dex replace that hormone. Hormones work best in cycles, particularly in women. So you can’t actually tell if something is consistent until at least 6 weeks have passed.

My ‘old’ steroid for Adrenal Insufficiency was Hydrocortisone, which I took 3 to 4 times a day. My new one is Dexamethasone, which I take once a day. Both are part of the glucocorticoid steroid family, but they’re slightly different. In a nut shell:

  • Hydrocortisone mimics the body’s natural circadian rhythm and lasts about 4-6 hours. Dex lasts up to 36 hours.
  • Hydrocortisone starts to work after about 20 minutes. Dex is much slower (I actually have no idea how long it takes, more on that later)
  • Dex is long acting, HC is short acting
  • Dex is a synthetic version of cortisol so doesn’t shift around the body the same way HC does.
  • You can’t really updose on dex, because it takes so long to work. So I still have to take HC for updosing. You can stress dose on dex though. But that’s another blog post. Shout out to my friend and her endo colleague for helping me do the conversions so that I can tell paramedics what dex equals in oral and IV HC terms if I ring them.
  • Dex is more ‘potent’ so if you do conversions, you can take less total during the day than you can on HC.

Anyway, to start off with, me and dex were not friends. I went from taking HC on a Thursday to starting Dex on a Friday. But dex takes longer to start working, so effectively my body thought I was missing my morning HC dose and did not like it at all. I felt sick, dizzy. shaky, moody, had stomach ache…  however, by 5pm something weird happened. I’d decided that if I was going to be miserable while I was withdrawing from HC and getting used to dex, I was going to do so with some new yarn and crochet projects. So I persuaded my husband to take me to hobby craft on the way back from a medical appointment to purchase said yarn. Usually we park in the disabled space outside, I choose what I want and then sit in the car while he pays because I can’t manage standing up in queues. However, that day I thought ‘I feel pretty spritely in comparison to earlier’ and decided to queue because it wasn’t that long. And then I remember thinking ‘I can’t usually do this at 5pm!’ because I usually spend an hour before my HC doses feeling like I’m going to pass out and needing to lie down.

Pro number 1 to dex- I don’t have the peaks and troughs so much during the day in terms of energy. I don’t have random crashes and I don’t feel really, really terrible in the hour before I used to take my HC dose. It does mean I have no concept of time anymore though because I used to be able to tell what time it was depending on how crappy I was feeling.

Which brings me to con number 1 of dex- my body clock is a bit haywire. The worst bit of the whole transition was my body took a while to get used to the delay in dex working. So I was finding myself awake at 3am because it was kicking in quite late in the day. It’s less of a problem now, but it still does happen somedays and I don’t really know why. It’s like jet lag- I really want to sleep but can’t.  And you kind of need the peaks and the troughs because that’s what makes you feel like a human being. So being ‘flat’ all the time isn’t necessarily a good thing. So then I started napping in the day more instead.

This caused me a few problems too. I used to have my naps in the afternoon. Now my naps are in the morning. It literally flipped overnight. But sometimes I still feel awful in the afternoon which I’m pretty sure is linked to cortisol and blood sugar, but I haven’t worked it out properly yet. Problem is, before I would sleep through the rough feeling. Now I don’t want to/can’t sleep at 2pm but feel rough. But also still need a nap in the morning. So con number 2 of dex- napping is less predictable 

However, I don’t need as many urgent naps anymore. If I go out, I don’t need to factor in a ‘and then I die in the corner quietly’ moment as much. As long as I pace myself properly, I can manage things a bit better than I could on HC- pro number 2 of dex.

In terms of stresses, my body copes better than before. The postman brought a letter from the DWP last week which usually means I have to updose and have an urgent nap but I didn’t need to last week. I dealt with it quite well! Pro number 3 of dex.

If my body clock isn’t skewed, I tend to sleep better on dex because my palpitations, pins and needles, vibrating feelings inside, night sweats and feeling sick night time symptoms have improved a lot. Pro number 4– this is the most exciting one by far!

I used to get stomach ache without fail every day and need to eat a lot of crisps to replace the salt I was wasting. Since I started on dex, I haven’t eaten any crisps and only had the stomach ache a few times. Number 5- bad low cortisol symptoms seem to happen less in the day. I still have them, but now I’ve just realised how badly ill I was before.

I’m eating a lot less when I’m on dex, which is good because I tend to eat when I’m feeling hypo, or when my cortisol is low. Pro number 6 for definite. Despite this, I’ve rapidly put on weight since switching to dex, which I’m pretty sure has to be because it’s a different steroid. So that’s con number 3.

I was sick a couple of weeks ago, and trying to work out what the hell to do with my steroids was a massive pain and involved some really stupid maths. Con number 4. But, I didn’t go to hospital which I would usually, so definitely pro number 7! Although, I did sleep for about 3 weeks, because I didn’t realise I was ill- I was just putting it down to dex being stupid. Those weren’t a pleasant 3 weeks because I didn’t get any of my warning signs to stress dose. So I have to relearn everything again- con number 5. That said, tapering back to baseline took less than a week and was positively a walk in the park in comparison to when I take HC (3 weeks of hell basically)– pro number 8.

Because of the way dex works, if I’m having a bad mental health day, it tends to be pretty bad, which I didn’t find so much on HC. It makes me incredibly anxious and obsessive and there’s not a lot I can do to correct it. Con number 6. 

One thing I’m still really struggling with is the fact that when I was on HC, I got pretty good at appearing vaguely normal and not falling over things when I felt everything going black or feeling dizzy (which was every day). Except my dizziness has changed so I feel like I’m trying to walk around a rocky boat all the time, and I fall over a lot. I’m hoping I’ll be able to retrain myself. Con number 7. I also feel sick nearly all of the time now, whereas it used to be limited to certain times when on HC. Con number 8. 

I generally feel more ‘with it’, more steady and have been able to achieve more day to day than I could on HC. So even though my cons list is almost as long as my pros list, some of those I’m hoping will become less annoying or I’ll get used to them as time goes on. I’m in by no means cured- if anything, this experience has made me realise how badly ill I was before and how I was probably pretty much on the verge of adrenal crisis 95% of the time.  By a healthy person’s standards, I’m still very limited because of my illness, but for me, the small improvements I’ve seen the last few weeks have made a massive difference to my quality of life, even if it’s only the tip of the iceberg. One of the biggest pros? I don’t have to worry about missing a dose. My life isn’t ruled by my tablet alarms 4 times a day quite so rigidly (I still take meds at those times but I won’t die if I miss them)- if I’m having a bad day, it doesn’t matter if I don’t wake up because I won’t die if I miss my dose. It’s so much less stressful than before! Big pro number 9 for sure!

I’ll probably think of more pros and cons after I’ve posted this, but I can always write a part 2 😉

5 Quirks of Having a Rare Disease

The end of February marks Rare Disease Day. Most of the time, having a rare disease is difficult, because it can be quite lonely and isolating. I wrote about some of the challenges in this post a couple of years ago. However, it does have its quirks and funny moments.

1. When other people try to offer you advice to ‘cure’ your rare illness.

I used to get really irritated when people would tell me about how if I eat 5 leaves of kale picked at the height of a full moon and brewed (ok, slight exaggeration) then I’d be cured. I’d think ‘seriously, my own doctor keeps getting my illness wrong, how can you possibly know how to make me feel better?!’.  Now I tend to find it amusing and nod and smile. If it helps them to think that they’ve cracked the code that has experts in the field stumped in the 30 second conversation we had about it, then fine. Maybe the kale cure didn’t work because I stirred the potion anti-clockwise rather than clockwise…my mistake.

2. You become an expert in your condition.

Mostly out of necessity more than anything, because you can’t just rock up to hospital and expect people to know how to treat you. And if you don’t feel like dying that day, it becomes a priority to make sure you educate yourself as much as you can about the ins and the outs. It does work out to be a positive thing a lot of the time though because it forces you to take responsibility for your health and be proactive about staying healthy. It does mean you spend a lot of time reading medical articles and trying to piece things together- I dread to think what my google search history looks like!

3. You’re used as a teaching tool a lot when you’re in hospital.

Once word gets out that there’s a rare disease patient, a lot of med students get sent your way. It’s not because you’re getting more or better treatment than the other patients, it’s so that they can all ask you the same questions and try to ‘diagnose’ you for practice. It depends on what mood you’re in or how nice they are- you can either make them do all the hard work and give very brief answers, or you can volunteer information that you know will lead them in the right direction. One student finished his consultation by saying ‘did the others ask you any different questions? Am I on the right track?’ which I found amusing!

4. You get used to telling Doctors they’ve got it wrong.

Rare disease is complicated enough. Being an anomaly of a rare disease makes it more challenging. Generally, because of the teaching tool thing, you get a lot of people stood around your bed at senior review with the consultant. But that doesn’t mean the consultant is a specialist in the field of your rare illness, it could mean he or she is the closest specialist on duty that day. So if they get basic facts about my illness wrong, I correct them. Which usually leads to a few gasps and shifty glances from the med students if a) I’ve dared to interrupt the consultant and b) I’ve told them they’re wrong. Whichever way you look at it, teaching tool or not, I’m still there for treatment, and if the understanding of my illness is wrong, my treatment is going to be wrong too. A good consultant would listen to the patient and discuss it. A poor consultant would say something like ‘fine, if that’s what you think’ and then try to bombard the students with a whole load of words they don’t understand and hope that I don’t understand either (which usually I do, you know, because of all my reading from point 2). It takes guts to challenge doctors and I only do it if I know I’m definitely right, but if I hadn’t in the past, I probably would be dead right now.

5. Your illness is used as a plot line in medical dramas a lot.

TV needs to have drama and sometimes normal stuff like flu and alzheimer’s just seems a bit bland. So rare diseases get used a lot because it makes the character look good when there’s a dramatic ‘save’ when they diagnose them and because writers can over-dramatise it as much as they want because 99.9% of viewers won’t have heard of it so can’t shout ‘you’re wrong!’ at the tv. Grey’s Anatomy once had a halloween storyline where Dr Karev had to run around tracking down a kid with the same illness as me who’d gone trick or treating on the wards because if she got scared by someone jumping out at her she would die (so he said). Not entirely true, but vaguely close. It’s quite fun to be able to diagnose the patient in the first 10 minutes of the programme though, and then feel super smug knowing you’re ‘better’ than Dr House when he eventually gets it (after he’s ruled out Lupus and Cancer, obviously).



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!

What I Learnt From Modern Family

Nothing profound about modern family life or parenting or living with other people anyway. Modern Family is an american programme about a family and their day-to-day lives and all the mishaps and adventures that come their way. It’s a comedy so a lot is over-exaggerated (it’s hilarious), but it got me thinking when I watched it the other day.

Cam and Mitchell are married and a friend stays with them, which they thought would be ok to start with and then he gets annoying because he interferes with their routine. He also tries to do ‘nice’ things for them, which end up ruining their theories or ‘plans’, which adds to the irritation. For example, he feeds them caviar for breakfast and serves a wine with dinner, both of which they’d been saving for ‘when they have something to celebrate’. But then as one of them points out, what is a good enough reason to celebrate?

Once you’ve held onto an object for so long and pin a lot of emphasis on enjoying or experiencing it ‘when something happens’, you risk never having the enjoyment or the experience of it full stop. Nothing will ever be ‘good enough’. And then the caviar will go off, or the wine will be corked and it’ll be wasted. Or you’ll finally decide on a moment, but the hype in your head will never be as good as the actual thing, so you’ll still feel disappointed. Whereas, if you’d enjoyed the caviar or the wine in the moment when it was still new and shiny, you would have enjoyed it and not felt disappointed.

Just because something is expensive, has status or was given as a gift to you doesn’t mean it needs to be put away for a rainy day. I’m particularly bad for getting gifts which are a one off e.g. expensive skin care or hair products and not wanting to use them for ‘every day’. But all that happens is I don’t use them up or I forget about them or they go gloopy so I never got the nice part of it or I didn’t feel the full benefit.

I’m not saying this applies to living a frivolous lifestyle and spending every penny you have and then some, I’m meaning there are some things in life that are meant to be enjoyed in the moment. That while looking forward to something can be exciting and can give you a focus, you still need to enjoy the moment. Not the thought of what the moment could be, the actual moment.

But you can apply the same to your feeling of worth and happiness. How often do we think or say ‘I’ll be happy when…?’ or ‘I’ll feel better when…?’ When what happens? When you have a career and earn a lot of money? When you have a baby? When you have a new car? When you feel less stressed? When you’ve finished studying? But what about all the cool things that happen on the way to those goals? What about an exciting new career opportunity which you didn’t take because you said you’d be happy when you got X promotion instead? Or what if it takes years to get pregnant and you miss out on 6 years of other adventures while you were worrying and obsessing? A car is a cool thing, but it’s just an object. It doesn’t make you happy. How will you feel less stressed if you don’t change anything? What’s miraculously going to change once you finish your studies? You’ll have a bit of paper and feel a sense of accomplishment, but what about all the really interesting things you could have read about on the way? And then, before you know it, you could be sitting there in old age saying ‘when was I actually happy?’. And the answer isn’t ‘when I was Facebook stalking people having ‘better lives than me’ and looking on instagram at the car/house/pet I really wanted to buy’.

So yes. Having goals and aspirations and ‘special’ things is what makes life exciting. But *experiencing* those things and appreciating them for what they are is really what makes life exciting, not the actual thing itself.

When you’re the unusual of the unusual

Adrenal insufficiency or Addison’s disease does seem to be getting more diagnosed than even a few years ago when I was first diagnosed. Or maybe it’s just I’m paying attention whereas I wasn’t before. Either way, it’s still classed as a rare illness.

The last time I went to my endocrinologist he said I was unusual, highly complex and he’d need to go away and read about me. I’ve been told by various medics I’m complex, weird, an anomaly, mystery…, so I’m fairly used to it and I usually laugh about it.

Except I really don’t like it. I laugh about it because I’m stuck with it and I’d rather find some humour in stuff than be bitter and twisted or upset about it. But that doesn’t mean I have to like it. And everytime I hear someone tell me ‘you’re just a bit messed up really’ in more fancy, medical words, it makes me feel a bit hollow.

Having a rare illness is isolating. Especially in a world of the Internet where you can find a million and one google results about how to make a unicorn piñata in a nanosecond, you can find anything and everything about lots of illnesses. Granted a lot of them aren’t necessarily useful, but you also find communities, forums, support groups and blogs.

Having a rare illness means there’s a lot less of that. The last time my GP googled something about my condition my blog came up in the first 5 results. I felt both pretty proud but also a bit disheartened.

But when you’re the exception to the exception, it’s even more isolating. My GP rang me to sort out my new meds my endo put me on and she didn’t really understand what the ins and the outs were of what I was taking them for. In the end I said ‘that one is for if I think I might die immediately, this one is for if I’m concerned but I don’t think I’m going to die and that’s my daily steroid’. But it means unless my GP goes away and does some research, which she can’t necessarily because there wasn’t a lot to start with, even in the medical world, I know more than my GP. So I can’t ask her for advice.

I’ve got a temperature and a bit of a cold so I need to apply some sick day rules. It’s always a bit tricky anyway, even on the ‘common’ treatment for AI, but I haven’t found anyone who is on the same treatment plan as me, despite asking on Facebook groups. The only thing which kept me from getting stressed about it was the fact that my endo also told me I had brilliant insight into what’s going on and how to manage things. In saying that he at least gave me confidence that whatever I thought was best probably was best. Obviously I have no idea if I did it right or not, but I didn’t die overnight so I’ve still got a 100% success rate!

It’s the unknown, not having anyone with similar shared experiences or having to hunt like mad to find them, the blank looks from Doctors… I’m dreading if I need to go to a&e or call 999 now because they sometimes used to struggle with stuff before- I’ve had to do my own IV to oral maths before and am regularly asked ‘how much of this/how often/is this right?’ kind of questions. (Although I’d rather that than someone treating me blind). Now there’s even more maths and an unfamiliar for AI treatment plan to contend with!

So today I guess I’m feeling the isolation more than usual and the hollowness and emptiness I feel when I get told I’m weird. It doesn’t help I have a ‘normaI’ cold on top so I feel crappy! If I have to be sick every day, sometimes I really wish I had a more straight forward illness, if that even exists!

‘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’ 😉


Lent & Shrove Tuesday

Lent starts tomorrow, along with all the posts on social media about what people will give up/do differently. I think sharing something publicly means you’re more likely to stick to it because you’re worried about what other people might think. But lots of people also do it as a ‘look how resilient/noble I am’ kind of post. Which is fine, except for the fact that the point of Lent isn’t about getting praised (publicly) for having successfully completed your fast or voluntary actions (people do things like donate to food banks now too), it’s supposed to be an individual thing which you do privately for no praise.

I was brought up catholic and went to a catholic school run by nuns who basically used lent as another penance. If you broke your lent thing, you had to say 10 rosaries (or at least the catholic kids did). For those of you who don’t know what a rosary is, one rosary is 1 Our Father, 10 Hail Marys and 1 Glory Be. So 10 rosaries is that x 10. We also had to go to confession every week during lent which involved more rosaries. So you got into the habit of either lying so you didn’t have to say so many bloody rosaries or having this fear of breaking the rules and being found out. And God being all seeing and powerful, he would know (!).

Unsurprisingly, after 7 years of that I don’t really find giving things up for Lent very difficult now. I went down the ‘I don’t want to lie or break the rules’ route, so did what I was told religiously (pun intended). I still would want to eat the chocolate, for example, but I was told I couldn’t have it, so I wouldn’t.

It wasn’t a particularly great mentality, but it’s actually served me quite well with my current diet and illnesses. For example, I know I feel amazing if I take double hydrocortisone. I don’t feel like I’m going to pass out as much, my sense of humour comes back without me having to force it, I stop feeling sick. I’ve got 5 boxes of it at home. So I could just take a whole load and feel better, right? But I don’t because I’m not supposed to. It doesn’t make it easy knowing that the magic pills are within reaching distance and my life would be so much easier if I took them, but I don’t because I know I’m not supposed to.

Or I’m on a low carb diet and can’t eat more than 60g a day. So no bread, cake, pizza, chocolate, crisps, pastries, sugar, fruit… basically all the ‘nice’ foods. I won’t die if I eat them, so I could cheat and say I’ve eaten low carb when I haven’t. But I don’t want to because I don’t want to let my endo down.

Sure, I could give up something like social media or crochet or something I really enjoy (like Nutella!). But why? To make a point to who? I know I can give things up, even if I don’t like it, I would be able to do it- I’ve given up a lot of foods recently. I don’t need to prove anything to myself and I’m pretty sure I’ve said my rosary quota for the rest of my life from having gone to catholic primary school. I could do something charitable, but I do that all year round anyway, not just for lent.

So I won’t be giving anything up for lent. I’ll be using the energy on fostering/maintaining a positive outlook and keeping doing the things that make me a nicer human being. It didn’t stop me from enjoying low carb pancakes though! 😉

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…!