Temperature Scarf: January

I decided that I’d make a temperature scarf for 2018 and wrote a blog post about it here. The gist of it is you crochet or knit a row with a colour which corresponds to whatever the temperature is for that day. Here the the colours and temperatures I worked out:

I changed it slightly because we actually had two days of snow, and I wanted something to represent that! So I added white in for snow days. I’m a bit sad I haven’t got to use purple yet, but I quite like how it looks so far:

We’ve had a pretty mild January! Mostly between 6-9 degrees, but we also had a couple of days where it was 13 degrees because I *nearly* had to get the light light blue out. But not quite.

Aside from it looking pretty and it giving me something to do while I’m waiting for my cup of tea to cool down enough to drink, it’s actually proving quite interesting. I wonder what February will look like!

Whose Life is More Valuable?

I was watching Grey’s Anatomy (love that show) and Dr Hunt said something along the lines of ‘I should be allowed to CT my patient first, he’s a father of two‘ to which Dr Karev replied ‘So? They’re both the same critical-ness, we were here first. You can wait‘. And it got me thinking about how we are being judged all the time by various different people. Even on a subconscious level- people won’t admit to it, but some people will cross the road if they see a group of teenage boys with hoodies on walking towards them. Or, it works the other way too; if one of those teenage boys was in a wheelchair, then the same person probably wouldn’t cross the road to avoid them.

But it shouldn’t happen in health care. People shouldn’t be judged on factors that another person has made an assumption about. Doctors take a social history as well as a medical history because it helps them understand the patient and what might be the problem better, but it shouldn’t be used as a discriminating factor when deciding on whose life is more valuable or who should get prioritised treatment.

Take two examples of people arriving in A&E: a Father of two and me.

Father of two

• married and has two children
• works as an accountant
• average height and build
• well dressed

Me

• Married no children
• unemployed
• overweight
• dressed in tracksuit bottoms and a hoodie

Now immediately, people would think I don’t look after myself because I’m overweight and looking like a chav/layabout. Lots of people think I’ve brought on my health problems myself because I’m overweight. You’d also assume that because I’m unemployed and wearing a tracksuit, I’m a layabout and a drain on society.

On the other hand, you’ve got a well dressed professional who has two children and a wife. He looks like he takes care of himself. If you were a doctor and had these two patients turn up to your emergency department and had no other information than what you could see and the bullet points above, consciously or subconsciously, you’d probably prioritise the man.

Whereas, in fact I used to be a head of faculty in a school and can’t work because I’ve got a long term chronic illness. I’m dressed in a tracksuit because I’ve been in bed all day and the fact that I changed my clothes at all from my pyjamas is a miracle. But I do a lot of charity work when I feel able to and I take all my medications when I’m supposed to and follow my doctors’ instructions. If I weren’t ill, I’d probably have a family too by now. I used to be UK size 8, athletic and exercised daily- I was the epitome of health

What if it turns out that the accountant has been siphoning off funds into his own back pocket? Or he abuses his children? Or he never takes his medication when he’s supposed to or takes a lot of recreational drugs? Maybe he’s having an affair. He won’t admit to any of that, but it’s ok because he looks like a nice man and has kids.

My point is, that face value is just that- face value. People are far more complex than an immediate snap judgement made by a Health Care Professional, but unfortunately, HCPs do make fast judgements and it does impact on your treatment.

When I answer the social questions, I purposefully don’t tell them I used to be a teacher and then I drop it into conversation a bit later on and watch the way their attitude changes towards me. Suddenly I’m seen to be a lot more trustworthy as a person, my opinion or the information I give them matters more, people tend to be more helpful and accommodating. My call button usually gets answered a bit quicker. I’m not making this up- I’ve done this experiment numerous times since becoming unemployed and it’s fascinating although really worrying watching people’s reactions. Just because they took one look at my appearance, made a judgement and then realised they were wrong when I gave them new information.

I appreciate that obviously a father of two dying would have a lot more impact on those two children than if someone without children were to die, but it shouldn’t be used as a reason to allocate treatment. Because it’s not my ‘fault’ I don’t have children yet, but even if I chose not to have children full stop, it shouldn’t be a discriminating factor. Nor should my employment status or choice of clothes. HCPs need to get out of the habit of seeing people’s worth as what they’ve managed to achieve in their lives or how they appear, because, actually, lots of people who are chronically unwell don’t get to achieve the milestones or career aspirations that other people enjoy or can afford to spend lots of money on dressing well *because of* our chronic illnesses. And, at the end of the day, it’s the chronically ill and the elderly who use the health services the most.

Everyone makes judgements based on the limited information they can see or are given. But, having worked with some really challenging pupils from dire social situations, I try really hard not to judge someone purely on face value, because you actually have no idea what has made someone act or appear in a certain way. A human is a human and everyone should be treated equally in a hospital setting, regardless of their social status.

I tried to make soup today

Not even homemade soup where I had to blend anything, I mean soup from a plastic tub where you stick it in the microwave and stir part way through.

Over the past couple of years, I’ve had a lot of people who are supposed to be helping me or giving me support tell me that I’m lying and my illness doesn’t limit my life as much as I say it does. Or they tell me that my condition(s) should mean I live a ‘normal life which isn’t restricted in comparison to other people my age’. Pah. I was having a bit of a grumpy day in my head anyway because my new meds have changed the way my dizziness feels, which means I spend a lot more time falling over things and being clumsy. And I already had issues with coordination anyway. So when I made soup and it went a bit wrong, it made me particularly grumpy! Although I decided to turn it around and find the humorous side of it, because otherwise I’d spend half my life being angry in my head. Plus it was also quite funny. Here ends the grumpy part of this blog post.

I decided at 11.30 that there was no way I was going to be able to make my lunch without having a lie down first, so laid on my bed and flicked through instagram. At 12pm, I got up because it had been 2 hours since my last snack and my reactive hypoglycaemia/insulin resistance/something else yet to be discovered means that I really struggle if I don’t eat every 2 hours at the moment (another thing not recognised by the government/some medics). So I kind of had to move even though I didn’t really feel ready to.

I found my soup in the fridge- my husband buys me ready made fresh soups with about 10g of carbs in per half a pot because I have to follow a low carb diet (also not recognised- I’ll keep pointing these out even though I said I wasn’t going to be grumpy anymore). But I have to make sure I eat enough fat/calories at the same time to take into account not eating the carbs, so I did a bit of quick maths/guesswork and decided to eat some cheese with it too.

All I have to do is pour half of the soup into the bowl, put the rest back in the fridge for tomorrow and put the bowl in the microwave for 90 seconds, stir and microwave for another 90 seconds. Then I get the bowl out of the microwave onto a pre-laid out tea towel which is directly in front of the microwave so I don’t burn myself. I can do it because I’ve practised it. I have a system. But if the system goes wrong, or I have to do it in someone else’s house or when people visit our house and move things, I can’t do it and usually end up burning myself (although according to *some* people I’m fine and I’m lying). Then I sprinkle pre-grated cheese onto it. I’m not lazy, grating takes too much effort.

Except today, I was really tired, so I overshot with the soup and poured more into the bowl than I meant to. No big deal? Just eat it anyway? No, because that messes up my carbs, and I don’t want to do any more maths because I hit my quota of brainpower for maths right now and I’m on a restriction of carbs. Plus if I eat too many carbs in one go it makes my blood sugar drop too fast. So no, it’s actually reasonably important I have the right portion. Tip it back into the pot then- that’s what I did. This happened:

It’s not really that big a deal, but it kind of is for me. I forgot that there would be some kind of overspill from the bowl to the pot. So it leaked down the side of the bowl. Trying to stop that happen, I tipped the bowl backwards and it all fell out the back of the bowl. I kind of just stared at it for a bit and decided to put the bowl down and take a photo of my silliness so that I could bitchily say in my head ‘THIS is why I need extra help’. Eventually I worked out how to get enough soup in my (new) bowl, clean up the mess on the side and then microwave my soup.

The problem isn’t so much the physical act of cooking. I know *how* to cook, I can physically lift light things like a bowl, I know how the microwave works. It’s being able to do it safely. What happens if I get one of my sudden dizzy spells while I’m getting the soup out of the microwave? I burn myself. Or if I start getting the shakes while I’m carrying it to the table? I burn myself. Or if I get a muscle cramp while doing something with hot soup? I burn myself. Or, something goes wrong like when I tried doing a simple task of pouring it into the bowl? I usually end up burning myself. And my body can’t cope with even a little bit of burning because I don’t make the hormone which responds to stress. This is why I don’t use sharp knives or the hob- can you imagine me and my coordination with fire?! On a particularly bad day, burning myself on soup could actually kill me.

The other thing is, I ration out my energy so that I can do a task. I don’t have any extra for when things go wrong or take a little bit longer or involve extra thought. So it might not seem like a big deal to other people having to spend a minute cleaning up soup that you spilled, but to me, that’s a minute of walking to the sink to get the cloth, walking back to wipe the surface, having to think logically because the soup is too thick to be absorbed, having to walk back to the sink to get a bowl to scoop the soup into, wiping the surface again, walking back to the sink to rinse the cloth, walk back to my soup *and then* carry out the rest of the task I’d set out to do. Which I can’t just leave until later because I need to eat at set times to manage my conditions and by this point I really needed to eat. In fact, I half thought about leaving it like that until my husband got home from work, but all I could think of in my head was how unsanitary it was and knew I’d obsess about it for the rest of the day, which would make me feel worse (also not a problem according to the people who tell me I lie). Once I’d microwaved my soup, I was holding the bag of cheese and a spoon and put the bag of cheese in the sink and the spoon in the fridge rather than the other way around. Then thought ‘hang on, something wasn’t right there’ and took 30 seconds to work out what had gone wrong. Also quite funny, but annoying when people regularly tell you that you’re ‘fine and are over exaggerating’ because it’s pretty hard admitting you’re a bit like a 90 year old dementia patient rather than a 30 year old as it is, never mind being told you’re lying about it.

I guess the point of this blog post is that disability doesn’t fit neatly into boxes which people keep trying to put me in. And it gets harder when it’s an invisible condition, because it really depends on the individual person. There’s probably no one in the UK who has my exact same illnesses presenting in the same way, which means a tick box form can’t possibly work for a lot of people anyway. I’m pretty good at making it look like I can handle life because I’ve practised in my house. I have a routine. I’ve worked out what I can and can’t do and don’t do the things I can’t. Do I want to eat soup every day for lunch? Not really, it’s boring and my food choices are already limited because of my medical diet- I’d rather eat a bag of doughnuts! But the last time I used the hob I had to call an ambulance. And anything else requires maths to work out my carbs. So it’s easier to eat the same thing every day. Just because I look like I can do it and can physically use the microwave or lift a bowl doesn’t mean I’m doing it safely- I probably shouldn’t be using the microwave a lot of days, but I don’t really have a lot of choice.

The important thing for me is that I keep trying to keep independent and do things for myself rather than relying on other people. It’s just unfair that trying seems to mean the same as lying in some people’s eyes.

Making an Animal Blanket

Or more of a play-mat type thing I guess. My friend got pregnant and I wanted to make her and her husband something a bit different for their baby. They chose not to find out the gender of the baby, so I opened Pinterest for inspiration and saw a zookeeper blanket, which was (unsurprisingly) a blanket with lots of zoo animals. Then I thought about making it a granny square blanket and sewing an animal on for each letter of the alphabet. I wanted it to be bright, but not knowing the gender of the baby meant I couldn’t do the typical blues for a boy or pinks for a girl, but part of the reason I liked the animal idea was because the blanket itself could be quite plain but the animals could be colourful.

So I dragged my husband to Hobbycraft and chose grey and white wool for the main squares. I missed out learning how to make granny squares when I first started to crochet, because I originally started so I could make animals for my charity blog so it was also a bit of a challenge for me. Some of the squares aren’t perfectly shaped, but I don’t think their baby will mind 😉 I decided on 4 squares along and 7 squares down, which left me with 2 squares spare, which I put the letters A and Z on.

Thinking of animals is actually quite hard for every letter of the alphabet, and it probably took just as long thinking of the animals as it did making the blanket! Especially because I had to be able to crochet them as well. I’ve done a lot of 3D animals, but appliqué animals was new to me, so some didn’t work as well as others and I relied heavily on other people’s patterns rather than being able to make up my own like I can with 3D animals now. I also wasn’t convinced I’d be very good at sewing the granny squares together, but actually that proved quite easy thanks to a really good Attic 24 tutorial. I’ve written where I got the pattern from for each animal as well.

Here’s my alphabet animal blanket!

A- Alligator: Repeat Crafter Me

B- Bear: Didn’t Anyone Tell Me

C- Cat: Trifles n Treasures

D- Dog: Repeat Crafter Me

E- Elephant: I haven’t written this one down, so can’t give credit sorry

F- Fish: My Crochet Projects

G- Giraffe: Repeat Crafter Me

H- Hedgehog: Repeat Crafter Me

I- Iguana: Repeat Crafter Me

J- Jellyfish: Damn It Janet Let’s Crochet

K- Kangaroo: Repeat Crafter Me

L- Lion: I made this one up myself

M- Manta Ray: I also made this one up myself

N- Nightingale: Repeat Crafter Me

O- Owl: Repeat Crafter Me

P- Penguin: Repeat Crafter Me

Q- Queen Bee: Repeat Crafter Me

R- Rabbit: Repeat Crafter Me

S-Squirrel: Maria’s Blue Crayon

T- Turtle: Repeat Crafter Me

U- Unicorn: Fave Crafts

V- Viper: Repeat Crafter Me

W- Whale: Repeat Crafter Me

X- X- Ray Fish: Repeat Crafter Me

Y- Yak: Repeat Crafter Me

Z- Zebra: Repeat Crafter Me

I decided a pink and green border wasn’t too girly or boy-y either way. I made the error of sewing the squares together first and then sewing the animals on afterwards. This made it really awkward, but I was having issues visualising it all in my head. I did actually change some of the animals and colours once I realised where they were all going so it did help in that respect. I quite enjoyed making the different animals and watching it grow from one lonely alligator all the way down to zebra!

I love my endo

I saw my endo on Thursday. I’ve seen a lot of endos, but this one os by far the best and most senior. I crashed since then so haven’t felt well enough to write an actually useful blog post, but equally there are some things that people I socialise with should probably be aware of, and also if other people read this who have similar conditions, it might help me learn too 🙂 I will write a better blog post at some point but here’s the gist.

• I might have a rare or little seen version of AI (or something else, it got a bit confusing) which my endo needs to go away and read about but he saw a case once 20 years ago. With this in mind, he changed me from hydrocortisone to dexamethasone.
• My cholesterol is still crazily high so I’ve been started on statins
• I might have another condition called diabetes insipidus, which, helpfully, is not remotely related to diabetes that most people have heard of. It’s to do with the way the body processes water/fluid. So I’m starting treatment for that.
• My low carb diet has been lowered further to 60g carb per day with more protein but he’s going to think about how my blood sugar doesn’t cooperate much and see if a further reduction in carbs helps.

I’m pretty good at recognising what to do (he said so too which made me feel proud!) and when but I’m going to be relearning a lot. And I’m a bit apprehensive because in that one appointment, I’ve made more progress and had more changes made to my medication since I got put on hydrocortisone 4 years ago. And the switch from pred to HC wasn’t a pretty one, although I know a bit more about it so I should be in a better position to manage it! But I’m going to get it wrong and will beat myself up about it. It might mean I have a meltdown in a completely inappropriate place or I could end up not managing as much as I thought I could and backing out of something or taking an urgent nap. I don’t know what’s going to happen. And, unfortunately, if I do have the rare thing, I don’t have anyone to ask or to learn from because it’s hard enough finding people with AI full stop!

I’m not going to hide away until I work it out though because my life is already limited so much as it is. So far I’m feeling positive about it- I’ll just do what I usually do and think ahead, risk assess things and factor in the changes. Then learn from any mishaps. Apologies if you end up on the wrong end of one of my hormonal mishaps though 😉 Obviously I’ll try not to be mean or rude because it’s not fair!

In the meantime, if anyone takes Dex for AI or Addison’s and has any experience of it, I’d be interested to chat. 🙂

‘It’s *just* your hormones’

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

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

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

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

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

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

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

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

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

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

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

2. To excuse negative behaviour

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

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

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

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

A Year Ago Today…

… I made my first Out With Animals animal! Well, it wasn’t officially for Out With Animals (yet), but my Facebook ‘On This Day’ thing tells me this:

I’d been knitting animals for my nephew for Christmas. And I saw a koala pattern and thought ‘that’s cute, I’ll make that’. Mostly for something to do! This was before I learnt about Pinterest’s existence, so maybe I specifically liked the idea of a koala, rather than just coming across it. Either way, a year ago today I made Kenny the Koala!

I remember my husband coming home from work and asking why I’d made a Koala and me saying ‘why not? maybe I’ll post them to the Postpals kids’.

The next day, so tomorrow a year ago, I was lounging around in my pyjamas trying to get something a bit more concrete with the idea of posting animals. You can read about my thought process here. My husband came home from work and I told him about the progress in my idea. So he asked what I was going to make next. Pass, I said.

On the 12th January, I finished Eric the Elephant.

I’d told a friend about my idea and she liked the sound of it and said that Coventry’s animal was an elephant. So if I made an elephant, she would take it on an adventure during her lunch break for me. Great!

I can’t quite remember why I decided to make an owl as the next animal, but I have a feeling I’d told another friend about my plan and she’d said how she was going to see the Harry Potter play and how an owl might be a good animal to take. So I made Olivia the Owl later that week.

I wanted to test out how it would work, so my husband and I took Kenny the Koala to Leamington Spa for the day. His adventure involved a walk around the park, a trip to Nandos, a nap and a trip the cinema. Accompanied by the grumblings of my husband as he tried to take photos of this tiny animal without it getting wet, muddy or lost. But by the end of it, he was surprisingly enthusiastic (as much enthusiasm as my husband shows anyway!) and was telling me that my photos weren’t good enough and finding different things for Kenny to be photographed with.

I didn’t get around to writing Kenny the Koala’s story until I’d set up my blog, and his story was first published on the 6th February. So that’s when Out With Animals’s official anniversary shall be! I feel like I should have some kind of online celebration or something for it- there’ve been a lot of animals and volunteers in the space of a year! Maybe something will come to me while I lounge around in my PJs like it did last year, but in the meantime, if anyone has any suggestions as to how to make the occasion online then let me know!

 

 

New Year, New Project: Temperature Scarf

I was flicking through Instagram and saw a post by Repeat Crafter Me about how they’d always liked the idea of a temperature blanket as a year long project. How cool! The gist of it is, every day you crochet based on the temperature for that day. Some people do granny squares, others stripes. It doesn’t really matter how you do it. But investing in wool for a blanket would be really expensive, and also a bit daunting- what if I missed a day? Then I’d never catch up. Then I saw someone on Pinterest doing the same thing with a scarf (yes, I spend most of my day stalking crochet people on social media!). A scarf is doable, isn’t much in terms of yarn and it wouldn’t take that long to catch up if I missed a day because I was busy. Or let’s face it- the most likely reason I’d miss a day would be because I was in hospital!

Here’s a photo of the scarf idea I found, from Repeat Crafter Me.

So I had a look at the temperatures and decided to re-think them for our climate here in Coventry, UK. We very rarely have temperatures below -6 and above 32, but we do have a lot of temperatures falling into the blue shades. Which might get a bit boring if it’s the same colour blue for every day. I came up with these as my temperatures.

I gave it to my husband to check to make sure I hadn’t done anything stupid. Either he’s as stupid as I am, or he really doesn’t pay much attention to any of my crochet ventures (probably the latter), because he declared it was fine. Except it wasn’t- I’d written 7-13 for the 4th colour from the right, which obviously wouldn’t work. Thankfully I noticed this on day 3, so could just redo the 3 days of the year so far. It’s a good job I noticed early on and not in March or something!

I told my husband about his lack of observation skills and he kind of did his eye roll thing (meaning- ‘jesus, you’re showing me crochet stuff I don’t care about). Then he asked ‘how will you decide what the temperature is though?’

Good point! Some people do it based on the temperature at the time they sit down to do it, some people do it based on the top temperature for the day. I decided that my time for doing the scarf would be immediately after breakfast, when I have to sit still for at least half an hour and not move until my tablets and food have all kicked in. Which is a great way of making sure I do it every day, but it does mean that the temperatures would all be the same for a lot of the stripes. My mum bought my husband a google box thing for christmas, which if I say ‘good morning’ to it when I come downstairs, it turns on the lights and tells me the weather. Including the top temperature! Bingo. That’s how I’ll do it then. And google knows everything!

So I’ve been doing it for about 7 days, today is the 8th day and I’ve had a nice spectrum of all the blues so far.

If it snows again I might do a white row. For now, I’ve just been doing 50 single crochet every day, but I saw someone else do a different stitch for each month, so you could differentiate between them, so I might experiment. I’m quite enjoying it so far! I shall keep you posted 🙂

Going away for the weekend

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

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

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

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

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

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

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

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

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

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

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

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