Temperature Scarf: March

March was a bit crazy weather wise! We had snow storms or ‘beast from the east’ but we also had some pretty mild temperatures!

My temperature scarf is a woolly record of the daily top temperatures for Coventry, U.K., based on this colour scheme:

I said in my February post that it is not my neatest crochet work, mostly because I do it every morning in the time it takes my tablets to start working, so I’m not with it!

I went back to single crochet for March. Here’s what it looked like:

On the days where there’s white and purple or white and blue it’s because it was both snowy and that temperature! Although, if I’m being honest, it’s mostly because I wanted to use purple but wouldn’t be able to if I just used plain white to represent snow… Then we had a few days of the same blues before more snow! Some milder temperatures and then it got cold again. It did try to snow, but only flakes, none settles on the ground.

Here’s what it looks like in comparison to January and February:

A lot more varied in colour than the other 3 months! Hopefully April should bring some warmer temperatures, meaning I can get the next colour up out!

March’s Makes

March was a bit of a weird month. I was looking back through my photos and it doesn’t look like I’ve done as much crocheting as in previous months. I spent about 2-3 weeks asleep and not feeling great which seriously hampered my crocheting speed. But I actually had the most successful week in terms of sales in March as well! Here’s what I made:

The shamrock pins I made last month were selling pretty well so I added some key rings to my shop, which also did well.

I had a custom order for a Fox. This was pretty interesting to make because I was given a picture to work off and I didn’t have a pattern. Usually when I make animals, I have free rein so can imagine the design myself, so it was a (good) challenge to work in a slightly different way. I was happy with the result 🙂

I was asked to make an otter for a birthday present. It was a bit tricky to work out how he should be positioned because otters spend a lot of time swimming! I went for he swimming on his back look in the end.

One of my night time blankets was this heart stitch baby blanket. I learnt heart stitch for Valentine’s Day and decided it was cute and would look good as a baby blanket.

I started crocheting clothes for preemie babies. You can read why I started doing this in this blog post. Here are a few more:

I also made some preemie and micro preemie hats and booties:

All of my preemie baby items will have a contribution made to Bliss or The Sick Children’s Trust as part of the listing.

Another charity thing I did was make some boobs for an infant feeding team.

Bit of a random make, but they help new mums out.

I learnt tulip stitch for Mother’s Day originally and then decided to design my own baby blanket using it and block colours. I also published the pattern on Ravelry (crochet and knitting pattern site) last week and it’s already had 50 downloads.

Mother’s Day, Spring and Easter mean I’ve sold a fair few daffodil badges and bunches of daffodils.

And also a few creme egg chick covers, although not as many as I thought I would!

I lost my coin purse of about 10 years and was pretty annoyed with myself. Until I realise I could take the opportunity to design my own!

I put that pattern on ravelry too. And that’s what I made in March! In April, I plan to think about some more accessories and gift ideas, because even though I love sunshine, there is absolutely no need for handmade, crocheted warm weather clothes!

How do you measure stress?

I was talking to a friend today and she asked ‘how do you know when to stress dose for stress?’ Good question. And I probably didn’t answer it very well at the time but I’ve been thinking about it.

Stress dosing and sick day rules are a bit vague anyway, even for the physical stuff, let lone the emotional and mental stuff. In fact, if you follow the ‘rules’ strictly, you shouldn’t actually stress dose for anything emotional except for bereavement.

Ha. Very funny. If someone gets stressed, whether it be because your kids won’t shut up arguing in the back of he car, or someone steals your parking space, or because you got an email that riled you, you have a subconscious stress response- you can’t help it. You can control your responses after that by processing your thoughts and feelings, but you can’t easily stop that initial surge of the stress hormone, cortisol.

So why do writers of the sick day rules assume that people who have adrenal insufficiency would be any different? Why wouldn’t we have an initial surge? Except ours is broken, so we start to feel sick and dizzy and fatigued instead. If we don’t replace the cortisol our body has used up, it all starts to cumulatively add up.

Trouble is, there’s no way of checking how much cortisol is in your blood so dosing your steroids (cortisol replacement) is one big guessing game anyway. Never mind when you’re trying to work out how much cortisol your neighbour’s dog irritating you with their barking has used up. And it sometimes barks more than on other days, so it pisses you off more some days than others. Or sometimes you’re not as bothered by it. How do you dose for that? And, doctors would argue should you be dosing for that?

So to answer my friend’s question, it depends. It depends on how spritely I feel that day. It depends whether something is an unexpected stress or not eg was I expecting stressful post in the mail or did it come out of the blue? It depends on what other mental and emotional stresses I’ve had that day. Or how worn out I am by physical stress. So it’s trial and error mainly. But here are some general rules I apply:

  • Anything which makes me have some kind of surge of adrenaline needs a small bump of about 2.5mg usually. It’s ok when you’ve got adrenaline, it’s when it wears out that the problems start. More if there’s more adrenaline.
  • If something makes me cry for longer than a few minutes, 2.5mg. If there’s snot involved, 5mg. Pacing around and not very comprehensible at all (meltdown/crazy lady), 10mg.
  • If you’d make a normal person sit down and look after themselves= stress dose
  • Arguments, confrontations, subjects that make me irate or have particularly strong feelings. My dad and I no longer speak about Brexit, for example.
  • General things that people might start a conversation with ‘you’ll never guess what just happened…’ and require some kind of sympathy for I’d probably think about a small bump.
  • Nightmares is one I used to frequently have to bump dose for- my body can’t tell the difference between real and not real!
  • If grey’s anatomy were to kill off Derek Shepherd again…! I’m so glad that was pre diagnosis!!

It’s hard and it’s different for everyone. I don’t stress dose for some things other people do and vice versa. You kind of learn what you need. It’s always better to be overdosed temporarily (temporarily is important) than underdosed- you might die if you’re low on cortisol but you won’t if you’re over.

Of course this illness is fun, so you also have to stress dose for happy things that ‘stress’ your system.

  • Seeing my niece and nephew. It’s exciting!
  • Going out for the day/weekend/seeing people. I get too excited chatting and laughing sometimes
  • When my friends tell me they’re pregnant or other equally exciting news
  • When I do something I’ve been looking forward to

So to answer my friend’s question, yeah in theory there is a point stress wise your body should get to in order for you to work out what dose to give it or whether you need to stress dose. But there are so many variables involved and guesswork that you basically learn how to do it on gut instinct.

Good question though 😉

Crocheting Baby Clothes for Preemies & Tiny Babies

**links if you’d like to make a donation or buy some of my preemie baby clothes are at the bottom of this blog**

I recently started making clothes for premature babies and selling them in my Etsy shop to raise money for charity. I was a premature baby in the 1980s (5 weeks early) and my niece was born last year prematurely at 29 weeks. Here she is:

For babies born anything more than a couple of weeks before their due date, they tend to come unexpectedly. Obviously you know you will have a baby at some point. But no one seriously thinks that they’ll have a baby at just over half way through their pregnancy. And even if you’ve been admitted to hospital for a couple of days before a doctor decides to induce or do a C-section, you’re still not ready. So you’re not necessarily prepared either mentally and practically.

All of the things you’ve read or learnt about in pregnancy classes don’t happen. You’re told that the bit immediately after giving birth is important bonding time for you and your baby. The reality is, you and/or your baby are seriously sick, so you’re lucky if you get to see them never mind get any skin to skin before they’re whisked away, probably intubated and plugged into a bunch of wires and then taken to the NICU where they’re put in a glass box (incubator). Already the mum is probably feeling like she’s failed as a parent because she’s not with her newborn and isn’t protecting them against the world.

Mum will probably have to wait to see their baby. Either because she’s sick herself, or infection control or because she can’t walk. Dad will be feeling torn between making sure their baby is ok and making sure his partner is ok, even though he can’t actually do anything for either. And if the couple have other children, it gets more complicated. Some NICUs don’t let young children on their wards. If you thought childcare while you’re in hospital giving birth to a full term baby is complicated, think about the complexities when the baby is early and you can’t just take the older kids with you.

So you can see within minutes of what’s supposed to be the happiest day of most people’s lives, it actually becomes the most stressful and terrifying. And baby classes don’t prepare you for medical emergencies and early babies. The nursing staff might be great but it still doesn’t take away from the fact that you’ve just given birth, your hormones are crazy and confused because you can’t pick up your baby, you’re having to express breast milk to help your baby and feeding it down a tube but your body isn’t cooperating because it’s confused, you’ve barely touched your baby and you can’t give them much comfort through the hand holes in the incubator and most NICUs don’t really have windows so you have no idea if the clock on the wall is saying 3am or 3pm anymore.

Knowing all of this, there are charities which help parents who have premature babies and there are volunteers who make clothes and other comfort items for premature babies. For example, bonding squares are given to mums to put in their bra or near their skin and then later placed in the incubator so the baby can smell their mum. My niece has a purple bonding square here:

Or octopuses give the babies the same tactile feeling of the umbilical cord so they don’t pull on their many wires instead.

However, as one mum wrote on something I read recently ‘you can’t do anything for your baby, and you’re given a tiny wool square which is supposed to help you and your baby bond. I don’t want to sound ungrateful to the NICU staff or the volunteers who made them, but it isn’t the same.’ Some hospitals try to actively involve parents in their baby’s care, some don’t or the baby isn’t well enough. The hardest thing most parents find is leaving their baby for the first time after their birth usually while they go out for the evening. Imagine having to leave your baby every night, not really knowing if they’ll still be alive in the morning and hoping you don’t get a phone call.

How does all this fit into me making clothes for premature babies? Well, my point is you don’t have many choices as a parent about how you raise and look after your child at this stage. You can’t necessarily even decide when to change their nappy or do basic things parents do. But your baby might be able to wear clothes. And they will definitely need to be wearing hats. The whole goal of this experience is that baby will come home, albeit a lot smaller than what was expected, but home even so. So when the Mum or Dad is walking out of hospital at night, minus baby, trying to keep it together, if it were me, I’d be thinking of those things and wanting to have some control over something, like choosing my baby’s clothes.

There are lots of volunteers who make premature baby clothes, but, and I mean this with respect, a lot of those volunteers tend to make outdated or old fashioned clothes. Some people might say ‘well their baby is alive, they should be grateful’ and I imagine they are grateful! But there’s new evidence that says lots of NICU parents experience some form of PTSD (as do the babies) and if the only thing they have to focus on is ‘my baby is alive, I should be grateful’, that’s not going to help.

I found it so hard to buy clothes for my niece even when she was discharged from the hospital because she was still tiny. And, providing the baby is allowed to wear clothes and it doesn’t interfere with their care (eg infection risk/monitor placement), why shouldn’t parents of premature babies be able to choose ‘cute’, modern clothes in the same way other new parents can? That’s what I tried to think about when designing my premature baby clothes, as well as the practicalities. Here are some I’ve made so far:

For donations from any sales I make, I’ve chosen the charities Bliss, because they provide general support to parents and premature babies, and The Sick Children’s Trust because they helped provide accommodation for my sister in law and brother while my niece was in hospital. This meant they could all stay, my nephew included, a few minutes away from her rather than an hour where they lived, and it kept them together as a family.

My niece is doing really well now. She still has occasional check ups for her heart condition but considering we were told she wasn’t going to survive at one point, she’s doing amazingly 🙂 . Here she is now, just before her first birthday:

Visit my OkThenWhatsNextCraft Etsy shop

V isit Paypal to make a one off contribution to my PayPal and I’ll make a donation on your behalf to Bliss or The Sick Children’s Trust

Photos shared with permission 🙂

I haven’t had coke in over a week

By Coke, I mean of the Coca Cola (zero) variety. But I bet I caught your attention 😉

This is actually a *huge* achievement. One of my horrendous (as in, I couldn’t ignore this one) daily low cortisol symptoms was feeling incredibly sick and getting a stomach ache. It’s a stomach ache that comes in waves every few minutes, makes you feel like you’re going to be sick, makes you sweat a lot and you kind of feel like blacking out so you don’t have to deal with it anymore. I could ‘fix’ the stomach ache by either swallowing lots of hydrocortisone, which is frowned upon, or by drinking copious amounts of coke.

Of the two, drinking Coke Zero caused me fewer problems than having varying amounts of hydrocortisone in my system- if I was never on my baseline because I was dodging stomach ache, my body would permanently be confused and would therefore always feel like it was low on cortisol at some point in the day. Meaning I’d have to take more hydrocortisone to counteract the stomach ache, and the cycle starts again. Drinking Coke was less ‘bad’ because it sorted out my stomach and pain and didn’t have sugar in it.

Except it has a ton of other crap in it, and while sweeteners and artificial additives are supposed to be ok because they don’t cause blood sugar to spike (in the same way) and have zero calories, people used to think smoking cigarettes was ok too. And look how that’s turned out.

A nurse friend told me a while ago that Coke Zero/Diet Coke was bad for insulin production because it triggers your body into thinking it’s getting food, but it doesn’t actually get anything from it because it’s all fake stuff. I listened and agreed with her at the time but also said that I didn’t know what else to do because if I didn’t stop my stomach ache, it usually meant a trip to hospital. She agreed it was tricky, but I stored away the information because she’d basically confirmed my suspicions about diet and zero drinks being bad for bodies.

Now my steroids have switched from hydrocortisone to dexamethasone, I don’t get stomach ache every day as long as I pace myself. I do feel more sick than I did before, but while unpleasant, it doesn’t put me in hospital like the stomach ache would. I still get stomach ache but it’s now once or twice a week rather than once or twice a day. I saw this as my chance to get off Coke!

I played around with some other drinks. I bought some ginger teas and sparkling mineral water and had a look at squashes and cordials, but they all either had lots of sugar or lots of additives. The problem with hot ginger tea is I can’t stomach it when I feel ill. But a ginger teabag in a jug of sparkling water for an hour seems to be working really well! And there are no additives or sugars to worry about.

I’m very much a person who if I put my mind to it, can just give up things. I don’t need a ‘this is my last…’ or significant starting date. So a couple of weeks ago, I decided to stop drinking Coke and switch to ginger sparkling tea mix. And it seems to be working, even today when I had a really bad stomach ache. I just need to make sure there’s always some ready in the fridge and I’ve got a small plastic bottle I take out with me. It does look like I’m drinking urine, but whatever!

I’m pretty proud I’ve managed to stop drinking Coke because I knew it wasn’t good for me, but equally neither was high doses of steroids and hospital. I was surprised that I did have a couple of days of withdrawal symptoms from it, which kind of proves my theory that there was definitely something in it causing my body problems if I felt withdrawn from stopping drinking it! But now I feel as normal as I get.

Clocks Changing and Adrenal Insufficiency

The clocks are changing this weekend in the UK so I imagine lots of people, especially people with kids, will miss their hour of sleep that vanishes in Spring time. It’s to do with your body clock and your body’s natural cycle, called the circadian rhythm. It’s hard on the body because some of the nightly processes the body has to complete won’t have had time to finish properly yet, including your cortisol peaking, which is what gets you out of bed.

But when your circadian rhythm is in tablet form, like with adrenal insufficiency, it can cause more problems when the clocks change. This is just my experience of what I do, it doesn’t replace any doctor’s advice and I’m not a medical expert. This is how I manage clocks changing.

Now I’m on dexamethasone, I have enough coverage to be able to ‘absorb’ any changes to clocks because it’s long acting. But when I was on hydrocortisone, it was different, because it only lasts about 6 hours in your body, so actually, an hour does make a lot of difference!

In spring, you lose an hour of sleep because the clocks go forward. However in terms of hydrocortisone, this means you get to take your morning dose what feels like an hour earlier (on the old clocks). And providing you take all your doses at the right time the day before and fay after, it should just feel like losing an hour’s sleep like everyone else might feel.

Eg if you take your dose at 8.30am, still take it at 8.30 am on the new time. Your body will ‘think’ it’s 7.30am but by lunchtime it should have adjusted and just take your doses as normal. Taking tablets early is less of a problem because it just means you don’t have to wait as long for your dose overnight. I actually found I felt better when the clocks changed in spring!

In autumn, you have to cope an extra hour. I found this hard personally. I couldn’t just jump into the new time like in spring, and I’d feel it for a couple of days afterward. I found the best thing for me was to stagger it by half an hour. If I was having a rough few days before, I’d maybe also think about adding a bump of 2.5mg at 4am to help the transition. (Doesn’t matter what 4am because it’s an added bonus dose not a compulsory dose. I’d recommend 4am new time though.)

Eg if your dose is at 8.30am, I’d take it at 8am new time. This feels like 9am to your body, so it’ll be a bit rubbish feeling because it’s half an hour later. Then take your lunchtime dose at the normal time in the new time. So your body will feel like it’s had to manage another half an hour extra, but staggering it into 2 half hours is better than a 1 hour jump in the morning, I found. Then take your other doses like normal.

Obviously those times are examples, so you’d need to work out how to apply them to your schedules. I never stress dosed for time changes but like any other day, if I felt weird I’d take an updose.

The other thing to remember is that everyone feels a bit weird when the clocks change because it throws your rhythm out. So it’s not anything to panic about if you do feel a bit different- for once our body’s our responding in a vaguely ‘normal’ way! 🙂

Phones and digital things on WiFi should automatically change so alarms or apps you use should also be the new time. But clocks and watches won’t, and neither will pumps if you use a pump- so make sure to check that’s at the right time!

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

Bread

Pasta and noodles

Pizza

Rice

All Fruit

Fruit juices

Sweets

Pastries like croissants

Pudding in general

Waffles, pancakes

Ice cream/frozen yoghurt/custard

Potatoes and sweet potatoes

Chips and sweet potato chips

Pies

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

Omelettes

Crackers and thin breads

Sugars and sweeteners

Semi skimmed milk

Jams and jellies

Honey and syrups

Alcohol

Biscuits

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

Sushi

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:

Cheese

Deli meat

Olives

Things with cream cheese

Yoghurt

Salads

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.

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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.

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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!).