How we treat children and adults with chronic illness differently

I mean this in two ways. The first being in our attitudes and how we view children with chronic or serious illnesses but also in terms of interactions with medics and healthcare professionals. Children should be treated differently because they have different needs, but actually, there are some aspects which I think could and should also apply to adults too.

Let’s look at how we view children vs adults with illnesses first.

It’s ok for children to act like themselves.

Children are actively encouraged to be childlike even when ill. If they’re laughing, joking or playing, people will rarely accuse them of faking being sick. Whereas adults who act like themselves or try to have a sense of humour tend to be viewed as suspicious and thought of as lying.

They’re encouraged to have a normal day.

If they’re in hospital, this means getting out of bed and going to the play room or playing with a play assistant. As an adult, if you ask to leave the ward or seem like you can function by yourself, you’re discharged ASAP to get the bed back whether you should be discharged or not.

Out of hospital, children might go to soft play or the park or out to eat. As an adult, I overly obsess about photos of me on social media causing me to get a backlash of criticism about how I’m ‘obviously feeling better’ or how I ‘can’t be *that* sick, clearly’. Children’s parents might hear ‘isn’t it wonderful that s/he’s able to play even just for a little bit’.

Adults aren’t ‘allowed’ to have good days.

If I seem to be doing ok some days, people ask when I’ll be going back to work or pass comments that I’m ‘better’. But they seem more able to recognise that children have good and bad days when sick in a way that doesn’t seem to translate the same when they think about adults and illness.

It’s not very often someone questions a child’s level of sickness.

If a child or parent says their kid can’t do something or needs something, we tend to listen and take their word for it. As an adult, I regularly have to justify my blue badge and ‘prove’ my disability and I’m regularly told I’m lying or over exaggerating.

Now thinking about how children are treated compared with adults when they are in hospital.

Wards and treatment spaces tend to be more friendly and less clinical looking.

There’s usually bright colours or stencilled animals on the walls. Lights are less harsh. Sometimes the consulting rooms don’t look like consulting spaces. Why are adult wards bare or just have a token, drab watercolour painting of some grainy old fashioned landscape? Even maternity wards are colourful in some hospitals and babies spend very little time there and can’t even see as far as the walls at that age. Lots of adults get stressed out by hospitals. A little bit of thought into the decor or structure of the spaces wouldn’t go amiss for us too. Plus I can’t be the only one who likes brightly coloured animals…

Tests and procedures are explained to children.

In a lot of cases, children can visit the scanning rooms or theatres beforehand to help them prepare and so it’s less traumatic. Obviously, if every adult had this the waiting lists would be even longer! But it’s not very often I get explained to me what will actually happen when I have a test/scan/procedure. I know in most cases what to expect because I’ve had so many, but I’ve learnt as I went along and very few tests bother me. However, I’ve had to ring the hospital a couple of times and ask what the test actually is for in the first place because all I’ve been given is a letter saying to report to a clinic for a ‘test/procedure’. If you’re only expecting one test then you can work it out but I shouldn’t have to play a lottery as to which doctor requested what test and when because I’m seen by 4 specialists- the least someone could do is tell me what it is so I can google it! Even better, a patient leaflet would be nice (only 1 hospital in the 5 I’m seen by does this) and, better still, a brief rundown by whoever is doing it on the day would be great. You’d think a conversation (hello my name is etc) would be standard if you’re going to be prodding a human in potentially intimate places, but it’s not always the case!

Time is taken to make sure the child feels ok about what’s happening

Kids get asked how they feel. I’ve been asked once in the last 6 months. The focus is on the medicine with adults, children are seen as slightly more holistic beings. If a child is crying, most staff will try to find out what’s wrong or help them feel better. I’ve been crying on wards before and had nurses clock me and walk the other way because they either don’t have time or don’t want to deal with emotions. Or I’ve had doctors who should know better stand up and open the door and essentially push me out because I’ve had a cry and they don’t know what to do with me. But feeling upset makes you feel worse which doesn’t help with any healing that could take place. Did you know that patients with HIV’s blood tests drastically improve when they feel more positive about their treatment? My psychologist told me that.

The other thing that baffles me is that children’s care just ‘changes’ overnight when they hit 18. Support they had is removed. They might have to switch doctors from one they’ve had all their life to an adult version (although lots of hospitals have been introducing transition schemes now because they’ve recognised this as a problem).

For some reason, we’re a lot more supportive and compassionate of children who are sick than we are of adults. There’s even a difference in the way we view teenagers with illness versus younger children. I don’t want people to pat me on the head and give me pity, I’d just like to feel that I don’t have to justify myself to everyone and that people actually care if I’m still alive the next day when I’m in hospital. Sometimes I feel like a number in the system or a bed number and I’d quite like more of the personal relationship with my teams that children seem to have with theirs.

Of course there are always exceptions- some children have nightmare experiences and some adults have amazing ones, me included on occasions. But it would be nice to feel a bit more like a human being when people interact with me about my chronic illness.


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.

What I Learnt from Grey’s Anatomy

Spoiler alert!

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

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

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

She had to wait a while to see a doctor. 

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

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

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

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

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

They blamed it on psychological problems like anxiety and stress.

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

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

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

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

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

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

They didn’t listen.

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

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


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

Temperature Scarf: February

I decided at new year to make a temperature scarf, which is a woolly record of the daily top temperature for an entire year. You can read my January update here .

This is the colour chart I’m working from:

January was pretty mild, February was pretty much the same temperature the whole time. Here’s what February looked like overall:

Pretty much royal blue, 6-9 degrees the whole time with the odd dip into the navy blue and a lighter blue. I was desperate for some purple, which is the coldest on my blanket! Finally, in the last couple of days, we had some cold temperatures. And snow. I was a bit reluctant to use white yesterday rather than purple, but as I woke up and there were already flakes floating about and snow on the ground, I thought I better document it. Today, on the other hand, there was just a smattering of yesterday’s snow. So I went back to purple today! Plus I felt a top temperature of -1 definitely deserved purple!

I opted to change stitch so that I could see where it changed from January to February. Instead of just normal single crochet, I single crocheted through the back loop, which gives it a bit of a ridge. With hindsight, this only really works properly if you do the same colour for a couple of rows because some of the colours get ‘lost’, but I quite liked the stitch and it means it looks slightly different on each side.

I hate weaving in ends. But they were getting a bit ridiculous. So I decided to weave them in now rather than having 365 days worth.

This then highlighted how wonky my crocheting is before my tablets kick in! Half the reason I do the temperature scarf in the morning is because I have a period of time where I have to sit still and do nothing while I’m waiting for my medications to start working. Otherwise I’m a walking disaster. Except it’s clearly obvious that my coordination and skill aren’t great at this time of the morning when you see how dodgy the raw edges of this scarf are:

It’s terrible! I can crochet straight lines, I promise! Look, here’s a blanket I made which is neat!

It didn’t help that the change in stitch also changed the tension, and I’m also pretty sure that I forgot which size hook I was using at some point. I think I’ll go back to straight single crochet for March. Here’s a comparison shot for January and February temperatures:

In theory, I should be using more light blue from now on as we get into spring. But, this is the U.K. and we’ve had heat waves in March and snow in May before, so we shall see!

What I Made in February

I had a pretty busy month in January, both in terms of creating things and orders wise. In February, I had a similar amount of orders but I didn’t feel too spritely for 3 weeks or so, so I kind of slacked off coming up with new ideas slightly. Nevertheless, I don’t think I did too badly!

**shameless plug- have a look at my Etsy shop!Visit my OkThenWhatsNextCraft Etsy shop **

I finished 2 blankets and started a third during February, all baby blankets. This one was a custom order:

I loved the colour scheme of it. So much so, I decided to buy some more wool and do a slight variation with sunshine yellow as the main colour. Not for anyone in particular, just for my Etsy shop!

The third blanket, which I’m still working on, is a heart stitch blanket.

I learnt heart stitch after thinking ‘it’s Valentine’s Day, I should crochet something with hearts!’ and decided to make this hair wrap/Band:

Then I got a bit obsessed by colour changes and different stitches so designed and made a baby cocoon and matching hat with a bow detail.

Somewhere in the back of my brain, it registered that the Six Nations Rugby had started and St Patrick’s day is coming up in March. So I decided to add to the daffodil and red rose badges I already made in January and include a shamrock:

And a thistle:

For Ireland and Scottish fans, respectively. No one can say I wasn’t being impartial!

These were actually more popular than I thought and I sold a few! So I started experimenting with some other shapes. Being a music lover, a treble clef made sense:

As did a quaver

Then the weather forecast started saying it was due to get cold again and suddenly people started buying hats! So I made some more to replace the stock I’d sold out.

I also got a custom order request for a super soft bunny ears hat. The request was based on a hat she’d bought previously, which was knitted rather than crocheted. So I had the opportunity to get my knitting needles out again!

I’m definitely a lot slower knitting than I am crocheting though. But the hat was quite cute so I decided to make a crocheted version for babies too.

Creme eggs are back in the shops again, except I can’t eat any which is traumatic! But it occurred to me that Easter is pretty soon ish and creme egg or chocolate egg covers tend to sell quite well according to other crocheters and are popular novelty gifts. So I made a chick version

And that sums up my February crocheting/knitting escapades! I did enjoy learning heart stitch and experimenting with using it and other stitches in projects, but I think my favourite thing about February was using the super soft polyester yarn for the bunny ears hat. I’d not worked with it before so it made a change. I also enjoyed experimenting with different colours more this month, like in the baby blankets, as I was given a bit more free reign about colour choices with custom orders.

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).



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’ 😉