‘Your Illness Doesn’t Define You’

Yeah, except mine kind of does. I think this phrase gets said a lot mostly by non-disabled/ill people about disabled/ill people- ‘your illness doesn’t have to define you’. Or it’s said by disabled people who are trying to be uplifting or ‘preach’ about being positive with chronic illness. I find it annoying when people say it to me. Firstly, I never said my illness defines me, someone else is telling me. Secondly, someone else is telling me how I should think and feel about MY illness. That’s just weird and wrong. Thirdly, what defines us as people anyway? Our actions? Our identity? Our personality?

My illness dictates most of my life. It decided I wasn’t fit to work. It limits my activities because I can’t walk far. It stopped me driving. It decides when and what I eat, when and how long I sleep for. It changes my mood and personality in a way that no amount of CBT or mindfulness will help. It made me put on so much weight I don’t look the same anymore. It means I can’t make my own meals, do the jobs around the house, make decisions for myself easily… So what part of my illness doesn’t define me? *It* chooses how I live my life, not me.

Part of the problem is that there are many illnesses which are common place which don’t impact on daily living. It’s not common place to have a debilitating illness, which is why most people struggle to relate to someone who does have one. Something like asthma or IBS or migraines might cause flares every so often, lots of people have them, but they don’t define people. For example, when I was asthmatic, and just asthmatic (before all my endocrine things), I would have said my illness didn’t define me. Even when it was uncontrolled and I was struggling to do a lot of things, I wouldn’t have said it defined me. I still had an element of choice over my hobbies and activities. I could manage it with inhalers. I was still ‘me’ personality wise. Or if you have a temporary illness, or one which relapses and comes back, you might be able to say your illness doesn’t define you. Because at some point, ‘you’ will come back again. But when you’re permanently altered because of your illness, it kind of does define you. It has to, because it completely changes you. And rather being told perhaps slightly patronisingly not to let something ‘define’ you, other people need to be ok with it too.

It might be considered to be an uplifting phrase. The person is trying to tell the person with the illness that there’s more to them than their illness. But when you’ve been diagnosed with something which has horrible symptoms, which you feel like is taking over your life and you’re already incredibly paranoid and stressed about trying to manage everything, hearing the phrase just makes everything so much worse. Am I talking too much about it? Should I not ask for help if I need it? Do they hate me because I’m sick? Are they trying to tell me that I should just get a grip and get on with it? None of these might be true, it could be said with good intentions, but in the same way mums don’t like hearing other mums say things like ‘my son has really good table manners’ when their own child is mashing banana into their hair, chronically ill people get a complex too when people comment on their (drastically altered because of their illness) personality. The child having good table manners might be a fact, and the mum might be saying it perfectly innocently, but it’s sometimes hard to tell what’s genuine and what’s a dig if you’re already feeling overwhelmed.

I reckon part of it is that the phrase is a phrase that people have heard other people say and it just ‘comes out’. You also see incredible things people manage to achieve despite chronic illness so other people naively think that anything is possible even with chronic illness. But some people can’t do those things regardless of how much drive and determination they have. For example, I would love to do the three peaks challenge to raise awareness for adrenal diseases. Some people from the Pituitary Foundation did that last year. Great for them- their illness is in a place where they can physically achieve those things. They might feel crap afterwards and need days to recover, but they could achieve it. I’d be irresponsible if I tried it- I’d probably need a helicopter and a trip to the nearest ressus department. So I’m not letting my illness define me by not doing that fundraising along with other people who share my illness, I’m choosing not to be an idiot and save the NHS and the air ambulance a lot of money.

That said, my illness isn’t the only part to me. It controls a lot, but it’s not the only thing I talk about, and I think that’s important and the only time this phrase makes sense. I’m obviously going to talk about it because it’s a massive part of my life. But it’s not the first thing I mention when I meet new people. I tend to only talk about it to strangers if it comes up organically in conversation or if I’m asked specifically about it. I talk to my friends about it, but I also ask them stuff about their lives too. I would agree that there are some people who live their illness and that’s it- it’s all they talk about. Some people need that because it’s a way of processing the challenges they face, others perhaps enjoy the attention they receive from having an illness a bit too much and expect other people to cater to their every whim. Whichever way, perhaps those people need to realise that while your illness can control your life, if you can still talk, read, watch TV or do any type of hobby, there’s something that your illness doesn’t have to butt its annoying head into. But they still won’t like to be told (or likely won’t listen to someone say) ‘your illness doesn’t define you’ 😉



Lent & Shrove Tuesday

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

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

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

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

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

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

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

Low Carb High Fat – Take 2

I’ve been following Low Carb High Fat (LCHF) diet for about a year as best as I can. It always gets a bit skewed immediately after I’ve been in hospital, because the food they feed me there isn’t remotely low carb at all, and there doesn’t seem to be a diabetic meal (that’s a rant for a different day). But I’ve basically been making it up myself because the dieticians don’t really know what to do with me because of my insulin resistance and reactive hypoglycaemia and some other so far undiagnosed quirks with my blood sugar. So I was eating about 80g of carb a day based on my own research, one of my endos put it up to 100g of carb a day and now my latest endo told me to aim for 60g of carb a day. The reasons I’m on this diet are:

  • I have issues with my insulin production and have hypos. Hypos, in my case, are caused when I eat too many carbs (or other trigger foods) and my blood sugar drops too quickly. If I avoid eating carbs then I can hopefully avoid the peaks and troughs with my blood sugar.
  • To help with weight loss. Taking steroids automatically makes you put on weight, but it also makes it incredibly difficult for the body to break down carbs and it stores them instead, making it virtually impossible to lose weight/not put on weight while eating carbs. Weight loss in an endocrine patient doesn’t work the same way as weight loss in other people e.g. fewer calories in still doesn’t make you lose weight.
  • I’m trying to slow down getting diabetes. I’ll probably end up with diabetes, but slowing it down would be good.

This is the lowest it’s been, and it hasn’t been as difficult as I thought it would be to limit it to 60g of carbs. Grams of carb isn’t the same as grams of food. If you look on the back of the packet, it’ll tell you how many grams of carb there are, just like it tells you how many calories or how much fat there is. But you have to be careful because total grams of carbs and net carbs are different things. Net carbs is where you subtract the fibre from the total carbs, but I’m not doing that because it requires waayyyyy too much maths, and most UK packaging tells me total carbs. Therefore, I’m on 60g of *total* carbs per day.

What does that look like? The average person eats about 260g of carb per day. Here are some foods and carbs for some context:

  • a slice of bread- 18g
  • 2 carrots – 10g
  • apple- 14g
  • mcdonalds milkshake- 60g ish
  • Cadbury’s Creme egg- 36g
  • bowl of cereal- 30-40g depending on what it is and how much you eat
  • a slice of cake- 30-40g ish
  • grilled chicken- 0g
  • most cheese- 0g

Even ‘healthy’ foods like carrots and apples have carbs in. And you have to be careful about things like sauces which have hidden carbs in e.g. sugar or flour as thickener. Mealtimes basically involve a lot of maths and weighing things. On 80-100g of carb per day, it didn’t really matter if I got it a bit wrong but every carb counts on 60g. So what do I eat?

  • a small portion of porridge for breakfast with a spoonful of nutella (my one treat for the day, and yes, I know it’s not low carb!!)- 21g of carb
  • soup for lunch. I have to be careful which ones though because vegetable soup sounds healthy, but can have up to 20g of carb in it. I aim for 10g max at lunchtime
  • Something meat or fish based for tea. Meat has very few carbs, if any. So I aim for 10g-12g for dinner including vegetables like broccoli, cauliflower, peas, squash, peppers… vegetables which grow above the ground tend to have fewer carbs in than veg grown below.
  • Snacks are things like meat, cheese, salad, oatcake (one a day), olives, natural yoghurt, nuts.
  • no alcohol, sugar free squash, no sugar in my cup of tea, no drinks with sugar in

The thing about LCHF is you aim to eat minimal carbs, medium protein and high good fats. The tricky thing for me is that I need to eat little and often because of my reactive hypoglycaemia, which means that some days I need to take on more fat and protein than others, which proves a challenge with both managing my blood sugar and trying to lose weight. And if I have a hypo, I need to eat carbs, full stop. It gets even more challenging still when you add in the fact that steroids make you ridiculously hungry all of the time. Hunger from steroids I can ignore- it takes a lot of will power, but I can do it. It’s when it starts triggering blood sugar/cortisol problems that I need to eat. Which basically means I spend most of my life starving hungry and only eat when I physiologically need to eat. And then when I do eat, my food choices are limited because of the medical diet I follow. Which, I’m not going to lie, leads to a pretty miserable existence if I let it get to me. Particularly as steroids make you crave carbs, and I can’t eat them. And having hormone problems is basically like having permanent PMT, and all you want to do is eat pizza and chocolate and I can’t eat those either. I could make puddings with sweetener and alternatives to flour, but I’m pretty dubious about some of the chemicals which go into those.

It’s not worth having a cheat meal or cheat day because it makes me feel so ‘hungover’ afterwards and I feel so ill and take too long to recover from it. It basically feels like having flu and I struggle for days afterwards. Most of the time I get on with the diet quite happily because I’ve got used to it and I’m trying to think positively about it. It doesn’t bother me if people eat things I can’t eat in front of me, and I’ve got really strong willpower so I don’t cheat. But I do miss pizza…!

Why People Should Stop Trying to ‘Cure’ Illness

Something that drives me mad is the statistic ‘more people are getting/dying from cancer/diabetes/asthma <insert other illness>’ than ever before. No. More people are not ‘getting’ the illness or dying from it more than before, more people are being *diagnosed* with the illness than ever before because we actually have tests and scans which helps us to say what illnesses are. Rather than someone dropping dead from something unknown and it being given a random name like ‘consumption’, like it would have done in the past.  More people are also surviving other illnesses which would have previously killed people off so that when they get something like cancer, diabetes or asthma in old age, it goes down as them having died from that illness rather than a heart attack 15 years previously. People have to die at some point, we can’t cheat death forever.

Perhaps the title of this blog is a bit deceiving. I’m not saying that people should stop researching illnesses or treatments or even cures, if a cure is appropriate. But there are some reasons why putting energy (and money) into cures isn’t going to make much difference:

  • quality of life is just as important as quantity of life. This is something that people who are healthy sometimes struggle with- I know I did before I had a chronic, debilitating illness. But if someone said to me I could live for years poorly and in pain and not leaving the house or only a few years but live life to the full, I’d choose living life feeling as well as possible. So curing an illness to be left with a poor quality of life because of the side effects isn’t necessarily the best outcome.
  • lots of illnesses mutate or have different strains. Even if someone managed to eradicate one type, doesn’t mean there won’t be a variation which occurs in the same person further down the line. It’s not really a cure if it keeps coming back slightly altered, it’s just postponing it. It depends on how much suffering someone is willing to go through.
  • the cynic in me thinks pharmaceutical companies will never ‘let’ some illnesses be cured. Even if there was a cure, they’re not likely to hand it over because they make their money from people who are sick. No sick people = no money.

In a lot of cases, a cure for an illness would mean some kind of preventative medication in the first place. At the very least, an injection or a medication would have to be taken at some point for a cure to be in place for an illness, until we evolved to not have that particular illness in our DNA. It’s not like the illnesses people keep saying we’re ‘fighting for a cure for’ are contagious (like cancer), so they can’t be eradicated in the same way something like small pox was. And this is where you have to think about the attitude people have towards health and why sometimes a cure wouldn’t work.

  • If you told someone that something they did every day would likely give them cancer, a lot of people would take their chances and do it anyway and think ‘it won’t happen to me’. How many people still smoke or drink alcohol in excess? If people won’t make lifestyle changes which are proven to decrease risk of illness then there’s not a lot of point.
  • People aren’t very good at taking medications every day. I was in A&E resus with a guy who had pancreatitis and needed emergency surgery because he hadn’t taken his metformin because, in his words, he ‘couldn’t be bothered’. I keep seeing people say how they ‘don’t want to take medication for life’. So until people get over this mentality of medication being bad, there’s no point in making a cure for something if people aren’t going to take it every day.
  • What about injections/vaccinations? Again, people find excuses and do the ‘it won’t happen to me’ thing. A paramedic told me he wasn’t getting the flu jab because he didn’t want to feel ill for a couple of days afterwards and he didn’t trust whatever it was they put in it. If a paramedic won’t get a flu vaccine which actually protects vulnerable patients like me, then a non-medically knowledgable person would come up with an excuse too. And what about all the myths about MMR and the HPV vaccine floating around? Having taught year 8 girls, there are lots of parents who refuse to sign the consent form even though it could prevent girls getting cervical cancer.

Besides, all of those things still rely on people adopting something into their routine or relying on medical intervention. What we should be addressing first before we even think about cures for illnesses is people’s attitudes towards health. We will die at some point. Granted, old age is the aim game for pretty much everyone, but something has to kill us. So curing Alzheimers (unless you can cure the genetic aspect and stop the disease in the first place) is pointless because by the time someone has it, they’re usually old and will die soon anyway- their body is failing. Having watched my Grandma have Alzheimers for a decade, I would rather research was put into a treatment that had made her suffer less because it’s a horrible, slow progressing illness for both the person and their family to experience.

We will get sick. Illness happens. It’s the body’s way of signalling that something is wrong and we need to address it. And fighting an illness can make us more resilient to other things e.g. a bad cold when we’re younger could help us fight a worse cold later. If you cure the common cold, our body will have a horrendous shock if it ever gets flu- it won’t know what to do with it. Throwing up is the body’s instinct to eject something toxic from its system. We need ‘normal’ illnesses to fight the bigger illnesses.

The fact that people get sick gives us a sense of perspective. It proves we’re not invincible, and actually, being reminded of our mortality isn’t a bad thing. If we thought we were going to live forever, we wouldn’t have as much drive to achieve things or live our lives. It should also give us a bit of a kick to look after ourselves better. Some people have a mid-life crisis if they realise their dad had a heart attack at their age, or an awakening if they have a health scare, which encourages them to readdress aspects of their life e.g work life balance, family time, eating healthily, smoking habits. People already have the (wrong) idea that they can turn up to the doctors and they’ll be magically cured of normal illness like a stomach bug, or at least cured quicker, and that’s not how illness works. Eating unhealthily and being stressed constantly is like driving your car into a row of bollards every time you leave the car park and expecting it to keep functioning well. It’ll conk out eventually.

Most importantly, we need to stop saying we’re trying to cure some illnesses because life is about living now. People keep waiting for me to ‘get better’ so I can ‘carry on with my life’. Which makes me feel really crap about it to be honest, when I didn’t necessarily before. Am I less of a person or failing at life because I have an illness? No. Would I rather be healthy? Yes, but I can’t, so my version of healthy isn’t the same as the average person’s.  It doesn’t function at the same level as other people’s. Does that make my life not worth living? I don’t think so. A cure would be great, but it’s unlikely to happen in my lifetime. So I’m not going to sit around and wait for my former health to be restored, I’m going to make the best of what I’ve got. I might not have cancer, but I’m also more likely to die on a daily basis than someone who has got cancer, so the stakes are still the same. I just don’t get a prognosis with my diagnosis.

A cure for an illness is a bit like expecting to be paid without actually turning up for work. You have to put some effort in and manage your expectations. You can sit in a car but it won’t take you anywhere unless you take control over it and drive it. A cure would be great for so many illnesses which are horrible for the people who have them, particularly ones like cancer, but we also need to change about how we view illnesses for any cure to be truly affective. In the meantime, I would prefer to see better treatment plans for conditions so that symptom management and day to day quality of life improved.


Diabetes Insipidus

I went to my endo a few weeks ago and had a pretty amazing appointment as far as progress made in terms of trying to work out what’s going on. But it’s pretty hard to explain what’s going on and I’m not doing a great job at explaining it verbally. It’s partly because it’s all still new and I’m having to relearn, but partly because I’m getting used to being on new treatment. Possibly the easiest of my ‘new’ things to explain is diabetes insidipdus (as I currently understand it, anyway).

If you don’t like talking about peeing habits this isn’t the post for you. It’s not something I would usually talk about on a blog, but. actually, maybe if I had read this 30 years ago (if I could read or if blogs existed) I might have improved my quality of life considerably before now! So maybe it will help someone else.

Diabetes Insipidus is nothing to do with the diabetes that everyone knows about- type 1 and type 2, which is related to blood sugar and diet. Diabetes Insipidus (DI) is to do with how the body manages water through the kidneys, which is controlled by a hormone called antidiuretic hormone or vasopressin (ADH or AVP). This hormone comes from one part of the brain and gets ‘stored’ in the pituitary until it gets a signal telling it to release it- the signal being when the amount of water in the body is too low. Then it helps the body (kidneys) retain water rather than getting rid of it, which is why your wee goes yellow when you’re dehydrated.

If you have DI, the hormone messages don’t get through, so the body struggles in retaining the water when it gets too low, and it makes you feel really thirsty as it tries to replace the liquids its lost. An outcome of this is people with DI drink a lot and need to go to the toilet a lot.

There’s a big question mark as to whether or not my pituitary hormones work, which are being tested. However, I need to go to the toilet constantly and drink a lot, which is why my endo started me on treatment for DI. Some things that should have really indicated DI in the past include:

  • going to the toilet multiple times an hour. Some nights I get up twice an hour, even though I’m not taking on as many fluids.
  • I just assumed I was always well hydrated because my urine was always clear. But apparently it’s just because my body wasn’t retaining any of the useful bits of it and I was flushing my electrolytes out.
  • I need to drink a lot, I’m constantly thirsty. Like I feel like I’m in a desert kind of thirsty.
  • I spend a lot of time needing the toilet but trying not to go because I don’t want to look ‘weird’ going to the toilet for a fourth time in an hour.
  • I always had to know where the nearest toilet was and would feel quite anxious if I knew there wasn’t one nearby.
  • If I was getting in a car or going to the cinema, or somewhere I couldn’t use a toilet when I needed to, I’d stop drinking fluids 2 hours before so I would be able to manage a whole hour and a half before needing the toilet. Which, I’ve now learnt, is a really bad thing to do with DI!
  • Whenever I have low cortisol or my body is under stress, I need to go to the toilet really badly as an impending crisis symptom. I said to my husband before ‘it feels like my body is shutting down’ when that happens, which it kind of is if I do have problems with my pituitary.
  • If I need the toilet badly, I can’t ‘hold it’ like other people can. Because other bits of my body can’t cope with it. Which I always assumed was because of low cortisol, which it might still be, but it could also be because of DI. Haven’t worked it out yet!

No one told me it wasn’t normal, so I’ve done that pretty much all my life. It’s not the worst symptom I have of all my conditions, but it’s a particularly annoying and embarrassing one, and people do tend to like to point out how often you go to the toilet and take the piss (pun intended). However, I started a very, very low dose of treatment for DI and it’s already made such a difference! It’s actually amazing. I take a nasal spray three times a week at night time (desmopressin). I have to limit my fluids to 500ml for 1 hour before and 8 hours after I take it, which is hard, but it’s worth it for the benefits.

  • I only get up once at night to go to the toilet. I still wake up for other symptoms, but I’m getting better sleep because of it. Like I can actually sleep for a whole hour in one go rather than waking up every half an hour
  • I need the toilet less in the day. I’m spending a lot less time uncomfortable because of it, and far less time going to the toilet.
  • I’m retaining the good bits from water. So I used to crave salt at night time because my electrolytes were all a bit out, and I used to have a funny heart rhythm which both went away if I ate crisps (because of the salt). It was getting to the point where I was licking salt because it was so bad. But now I’m retaining the electrolytes better, I haven’t eaten any crisps for 2 weeks. It’s early days, but I’m hoping that continues.
  • Having DI means I can apply for a toilet card. It’s like the one for crohns disease, where the idea is you can present it to a member of staff and they will (hopefully) give you access to a toilet not usually made available to the public. They don’t have to, but they should. It just means it’s a bit less stressful going out.

Like I said, going to the toilet all the time was annoying, but I didn’t actually know it wasn’t normal until recently. I just got on with it! But now I know what ‘normal’ people have in terms of toilet habits, I’ve realised that actually it was taking up a huge part of my life, was very inconvenient, and was having a wider impact on things like my sleep, my level of anxiety going out and that actually, I do avoid specific places or activities because of my fear of needing to go to the toilet. So, early days, but so far I’m really appreciative of my endo for asking me random questions and not just dismissing me!



What I Crocheted in January

I’d been making snowflakes and elves and other Christmas related gifts and items since about September, so when the Christmas orders ended, I suddenly had a lot of time on my hands! January is always a quiet month for any business, because no one has any money to spend, but I was pleasantly surprised that I still was quite busy!


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

Two custom make blankets completed, some charity daffodils and twiddle muffs, some hair slides sold from stock, and, possibly the most random request I’ve had, marmalade sandwiches and a jar of marmalade for my friend. Which turned out to be really fun to make!

Part of the thing I love about crocheting is being able to be a bit creative, since that’s what I miss most about having stopped working and playing music. So I used the time in January to try out some new designs and play around with ideas.

heart hanging dice

I made my husband some fluffy dice for christmas as a joke, and then one of my friends pointed out that love heart fluffy dice might be good for Valentine’s Day. So I gave it a go, and was quite pleased with the result! I think they can be a pretty good all year round decoration, not just Valentine’s Day.

heart hanging decoration red

Then I decided that people might like hanging decorations in general and personalisation with initials is always a big hit with most people. So I made a mock up so that I could put some in my Etsy shop. I was having a bit of a slow day when I made this- I actually was intending to make a ‘J’ as in the first initial of my niece’s name, Jenna, but I’m apparently not too great at my letters because I sewed it on the wrong way and it looks like an ‘L’. Which coincidentally works because my nephew is called Luke. So that’s the story I’ve been telling people anyway 😉

rose brooch red

I sold Poppies for the British Legion in November, and they proved really popular. I thought people would stop buying them after poppy season ended, but I’m still selling some. I thought about what other flowers people might like and opted for a coiled rose badge or brooch which people might buy for Mother’s Day.

Then my friend (the same one as before) suggested making crocheted rose bouquets for Valentine’s Day. Brilliant idea! I thought about it a bit and decided that a green pipe cleaner would be easier to post and display rather than a green cocktail skewer, which is what other people seemed to use. A bit of experimenting with the glue gun and a trip to Hobbycraft resulted in this:


I thought they were cool so now we have some in a vase in our living room. A few Welsh friends mentioned that they’d like daffodil badges for St David’s Day in March, so I had a go at those too:


And also some bouquets of daffodils- they’re a nice, Spring flower, and they might be good gifts for Mother’s Day.


I decided to make the daffodil badges with a charity donation in mind as well. It’s also the symbol of Marie Curie, but St David’s Day celebrations in Wales are a big thing, and there’s a race and fundraising weekend in Cardiff to support Welsh charities. One of those charities this year is Cancer Research Wales. So when people decide to buy a daffodil badge, they can choose which charity the donation goes to, and then I donate to those charities at the end of each month. I haven’t sold as many as the poppies, but it is still January after all!

Another charity donation item I added to my shop is a pair of twiddle muff wrist warmers. Brenda, one of my followers on Facebook, suggested that the wrist warmers I made for myself at Christmas could also be used as twiddle muffs. I did a bit more research and thought about how I wanted to design them and produced these:


I made the charity link Alzheimer’s Society UK because my Grandma had Alzheimer’s for 10 years before she died last year, but the mittens would be good for any condition or individual who feels comforted by having something sensory to fiddle with. These ones sold super quickly- I think they’d only been live in the shop for 3 hours before they were sold! I plan on making more though.


At Christmas, I made snowman coasters which proved really popular so thought the same might be the case for Valentine’s Day. I saw a pattern for a Granny Square style love heart and thought that would be easily adapted to make coasters, and it was!

I then used the same pattern to make Valentine’s Day cards.


You can remove the heart and sew it to other things or use it to accessorise bags or scarves or coats. It’s something a bit different to a normal card. Plus I haven’t written any really sappy messages inside – you can do that yourself if that’s your thing! 😉 (it’s not my style!)


I made this love bug hanging decoration one day for a bit of fun. It looked cute and I needed cheering up, so he served his purpose!


I like to make blankets in the middle of the night when I can’t sleep. Blankets are good because they’re repetitive, take very little concentration and you can pick them up and put them down easily. This one doesn’t have an intended recipient, I just liked the stitch pattern when I was looking through pinterest one day so decided to make a baby blanket in blue! It hasn’t been blocked yet, that’s why it’s slightly wobbly on the border.


I didn’t make this in January alone, but I did finish it in January. I made it as a playmat/blanket gift for my friends’ new baby. I wrote a post about it here.


I didn’t know the gender of the baby until it was born, so made a pink sparkly penguin when I found out she was a girl. I love this wool!


Booties and baby hat sets have been on my list for a while for things to make but I haven’t had the time to experiment with designs properly. January was that time! I’d never made booties before, but they weren’t as hard as I thought they’d be. The problem I had was that I didn’t like the way they were turning out e.g. the shape was funny or the cuff wasn’t right. So a few adaptions later and some animal features, I managed to make some I was happy with.


Someone told me Easter was early this year, so I thought I should experiment with some Easter gift ideas before I got potentially more busy with Valentine’s day and Mother’s Day orders. I thought these baskets were pretty cute. And they can hold chocolate eggs!

I also had 2 custom orders for blankets this month- one baby size and one single bed-kind-of-size length.



I love the colours in both- I was quite sad to see them leave me!

I’ve still got a fair few things on my list of ‘things I want to try to make’ so I’ll hopefully get round to trying some more ideas in February! I think the thing I’m most proud of having made this month is the animal blanket for my friends- it was a challenge but pretty fun at the same time.

If you’ve seen something which you like the look of, you can message me for a custom order, find me on facebook/twitter/instagram as @okthenwhatsnext or have a look at my Etsy shop here: Visit my OkThenWhatsNextCraft Etsy shop 

january what i made.JPG

Credit for patterns used:

Easter Baskets: Hello Yellow Yarn
Bear Booties/Hat: my design
Coiled rose: Attic 24
Granny Square Heart: Crochet Tea Party/some adaptations
Daffodils: Attic 24
Twiddle Muff Wrist Warmers: my own design
Baby Blue Blanket: Arcade Stitch, Wool and the Gang
Pink Penguin: Amigurumi Today
Love Bug: Lily Sugar n Cream
Marmalade Sandwiches/Jar: My design
Neat Ripple Blanket: Attic 24
Love Heart Hanging Dice/decorations: adapted from Bella Dia’s tutorial

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:

temperature scarf 2

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


  • 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!