5 Quirks of Having a Rare Disease

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

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

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

2. You become an expert in your condition.

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

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

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

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

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

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

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




What I Learnt From Modern Family

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

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

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

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

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

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

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

‘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’ 😉


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

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!

Stuff from 2017

I wanted to try to make a nice ’17 things from 2017 post’ like other bloggers are doing, but I can only think of 14 highlights. Either that or I’ve forgotten some of the cool things I did! Either way, this post is a work in progress, so if you think I’ve missed something/we did something together that fits in, let me know!

2017 was a bit of a ‘meh’ year. It happened. I survived. I had some lovely times, I also had some pretty crappy ones. Here are some of the blog-worthy things my husband and I came up with while on the M25 this morning.

(In a random order, depending on when I thought of them)

  1. I started my Out With Animals blog. It’s a charity-based blog and you can read about why I started it in a lot of detail here. I looked a bit nuts to start off with, persuading my friends to take animals out and take photos of them to post to sick or vulnerable children, but I’m pretty proud of how far it’s come in less than a year.

Out with animals logo.jpg

2) I learnt how to crochet. Pretty important it turned out for both my animals blog and my other venture this year! Here’s some of where I started:


and here’s what I can do now!

unicorn 3

3) I decided that if I was sitting around crocheting all day, I may as well try to make some money from it. So I opened an Etsy shop and Facebook page. My small business doesn’t earn me loads of money and I’m never going to be a millionaire, but it funds my crochet hobby (obsession) and gives me a sense of purpose- I’m really liking the challenge. Search Ok Then What’s Next (or @okthenwhatsnext) on social media if you want to follow my pages 🙂


4) I became an Auntie again! Now I have a niece and nephew and I really like spending time with them.


5) I wrote a book. Which I self published, and then people actually bought it! Again, not lots of people, but it’s still pretty cool! Lots of people asked if my Out With Animals stories were available as a book, so I thought ‘why not?’. Plus it’s a great way for keeping the blog going- I can’t work so was getting a bit worried about how I was going to keep being able to afford to make and post animals, but selling the books means it kind of funds itself if people keep buying them. Send me a message via my social media @outwithanimals or through this blog if you want to order a copy 🙂


6) Some posts I wrote about adrenal insufficiency on this blog got picked up, retweeted, shared and commented on by big charities either in the UK or the USA. I’ve also had messages from other patients saying how useful they’ve found it. I started it for that reason- when I got diagnosed I couldn’t find anything which told me how to actually live with the illness. So I’m glad it can help other people.

7) I volunteered at an endocrine conference. So I got to help with doctor/nurse education about adrenal insufficiency and addison’s disease. Plus I learnt a lot of new things too.


8) I published some of my crochet patterns online. And people have downloaded them! I guess this means I can call myself a crochet designer now? I have a ravelry and etsy shop where you can download these from (also called Ok then What’s Next).

9) My husband and I went to 2 concerts at the Royal Albert Hall. Both were really good! We saw Harry Potter and the Philosopher’s Stone performed by a live orchestra and also the Piano Guys.



10) I turned 30. And we had a ‘surprise’ party for it with lots of my friends. I hadn’t seen a lot of them for a long time so it made it extra special. Here’s a photo of my really tasty cake a friend made me:


11) I had fun trying to complete by 30 things lists. I didn’t quite achieve all of them, but I’m still working on them! I had a 30 things I wanted to try before I turned 30 list, and 30 foods I wanted to eat before 30 list. It was great fun to do, so I’d recommend doing it even if you haven’t got a significant birthday coming up!

12) We went on holiday to Devon with my parents. And 2 dinosaur friends! We had a nice week away in a part of the world I hadn’t been to before. A holiday involving scones, ice cream and the sea was great!


13) I sent my 100th animal out on an adventure for my Out With Animals Blog. It was Timothy the Tuatara (nope, I didn’t know what one was either- it’s somewhere between a gecko and am iguana!). Considering I couldn’t crochet at the start of the year, it’s very impressive, I feel anyway, to have made 100 animals in less than a year!


14) I meditated every day for the entire year. Bringing my streak to 2 years of meditating every day.


There’s a whistle-stop tour of my year! And if anyone can think of 3 other blog-worthy things I might have done, I’d quite like the symmetry of getting 17 things for 2017 😉


Being ‘an inspiration’

I’ve been thinking about writing a post about this for a while, but it’s been hard to sort out the best way to phrase it without sounding ungrateful or arsey. Apologies if I still don’t manage to phrase it well!

There’s a ‘thing’ at the moment where people who don’t have disabilities, either physical, learning, invisible…etc, look to people who do have disabilities and call them inspirational. It might seem like I’m sounding ungrateful by saying this- someone is recognising that people with disabilities face challenges daily that others do not, so we should be grateful of this- but it’s actually not helpful and a tad patronising. Basically, the way it feels when you do have a disability and someone calls you inspirational is that you’re inspirational because you have a disability and still manage to live. That’s it. Just because you’re alive.

Does anyone else get called inspirational for living their lives? Not because of what they choose to do with their lives, but because they wake up each morning and eat their breakfast and clean their teeth…. or even go to university or school or work…. or are married and have children? No. So a disabled person isn’t and shouldn’t be called an inspiration because they do those things too.

For one thing, it’s a lot of pressure. People throw around phrases like ‘overcoming adversity’ and ‘being a positive role model’ and ‘they never complain’. Well, actually, not everyone will walk again who is in a wheelchair. And that’s ok. Some disabled people will live a life where they neither positively nor negatively influence people. And that’s ok. And disabled people will complain about their lives, just as much as any other person complains about their lives. And that’s also ok. Just because someone is disabled doesn’t mean they have to be seen to be continuously fighting some kind of battle. It doesn’t work like that.

Secondly, you might think that by calling someone inspirational, you’re promoting equality and inclusion. But if you’re disabled, it actually feels the exact opposite. There are lots of Facebook posts saying things like ‘special ed kids just want to be accepted and play sports like regular children. Share if you think they should be included in sporting games‘. ‘Regular’ children don’t always get picked for sporting games if they’re not the best. If they’re not the best, why should someone who is considered to have a disability be chosen just because they’re special ed? They shouldn’t be excluded from a game where anyone is allowed to participate, of course, but by including them when they’re not the most worthy contender limits them in different ways. By saying that ‘people with disabilities need to be included in X because they face challenges’ minimises the amazing (and inspirational) things people with disabilities actually do. A kid with a disability might be terrible at sports but an amazing singer. But they might not have gone out and worked at nurturing their musical talent if they hadn’t learnt they were terrible at sports first because they were always allowed to play out of pity. It gives people the impression that disabled people aren’t capable of amazing things and are limited if you make them feel like the only reason they’re included is *because* they’re disabled. I purposefully didn’t write on any job application forms that I had a disability because I didn’t want to tick one of the equality and diversity boxes and risk being offered the job for that reason alone. I don’t want a job if I’m not the best candidate for it. Or another one I see a lot is ‘autistic girl goes to prom’. And? Why shouldn’t she go to prom? Why is her going news worthy?

You might be reading this and thinking ‘well, if she doesn’t want people to give her special allowances, then she should just get on with it like normal people do’. Disabled people do need reasonable adjustments or accommodations to be able to do certain things. Things like ramps and bathroom facilities or extended time in exams. Those level the playing field so that disabled people have the same opportunities as other people, not so that they can have an advantage in life.

As a person with a chronic illness/disability, I need people to recognise that I do have special needs which might need adaptations or accommodations. But because I exist and manage to live with a disability is not a reason to be called inspirational. There are lots of people with disabilities who do inspirational things which are news worthy- athletes, charity fundraisers, people who champion specific causes. But they’re inspirational because of *what* they do not because of their existence alone. Someone can have an inspirational can-do attitude, or inspire young people to pursue their dreams by demonstrating what they’re capable of or support other people in a similar position to them. However, those are all things that anyone can do and be called inspirational for, disabled or otherwise.

Everyone likes praise and recognition for things. I’m sure I do have my inspirational moments, like everyone does. But I won’t be grateful if I’m called an inspiration just for waking up in the morning and not having died overnight- you’re missing everything else that I’m capable of doing and have worked hard to pursue in life in doing so, and it puts a glass ceiling in the way which I didn’t have before.


I find this time of year particularly anxiety-inducing. There is so much pressure on having the perfect Christmas and new year and looking back at the last year and making plans for the new one. I feel pressure to be ‘normal’ on a normal day never mind the glitzed up sparkly Christmas version of me (if that even exists anymore!) that other people seem to manage to pull off at this time of year. It’s hard when you already feel like you ‘ruin’ things by needing naps/set meal times/can’t walk far etc, never mind when there’s so much more importance placed on gatherings as part of the festive season. Part of it is desperately wanting to feel normal and forget about being sick for a bit, to then be reminded of your limitations in an even bigger (more glittery) way when you ‘fail’. Part of it is how you perceive it. Part of it is the fact that people like to talk about the year gone by and their plans and it leaves you feeling stuck.

I like hearing other people’s plans and accomplishments. But, I’m not going to lie, it’s hard, and it takes a lot of strength to not get bitter and angry about it. Particularly if you’re already feeling terrible from socialising but putting on a good face, and there’s the anxiety of having to answer the question ‘what about you?’ coming up. It’s a no win situation- if you’re asked about your plans, it’s stressful. If you’re not asked because people are trying to be sensitive, it’s understandable but still stressful- you just worry about it in a different way and it makes you feel excluded even if the opposite was intended.

Chronic illness usually limits plans through health reasons, financial reasons because money is tight, logistical reasons because of treatments or practicalities or just plain ‘not a chance in even contemplating that, it’ll make me ill’. That’s before you even consider any of the ‘normal’ stuff people have to think about when factoring in olans. People’s plans usually include:

– moving house

– getting married

– having children

– travelling

– getting a promotion

– changing jobs

– getting more exercise

– setting fitness goals or starting a new hobby

– booking time away or visiting people

– getting a pet

…. just general ‘better than this year’ stuff.

Chronic illness makes all of those hard or impossible. But actually writing that list proved quite therapeutic for me- lots of people might say those are their goals but still not be able to achieve them. And, according to google, most New Year’s resolutions fail mostly through a lack of motivation.

Maybe I need to be looking at it in a different way. People who are healthy, who could manage whatever they wanted, potentially lack motivation to achieve their goals so feel like they’ve failed and wind up feeling the same as me anyway. Whereas I’m at least realistic in my goals and fail because of something I can’t control- my health. So really, things might end up the same but at least I don’t need to feel like I have to make excuses about why I haven’t managed things, or big up the things I have achieved when we have this conversation next year. I kind of know what to expect. For me, the worst bit is when my GP says ‘this year is going to be a good year for you, I can feel it. Roll on 201…’. She’s said the same thing for 4 years now, somehow I don’t believe things are going to suddenly get better when they’ve been getting steadily worse!

My goal, for now, is pretty simple:

– stay alive and live in the present.

Easier said than done. I might be limited to what I can do, but I definitely appreciate it all so much more than before I was ill. If I had a job, I wouldn’t clock watch every day, I’d appreciate the fact I can earn money myself. I love crocheting because I can make things myself and watch things grow from nothing- that’s pretty cool! If I go outside on a sunny day, I look at the different colours more closely. What’s the point in getting a massive pay rise if you’re too busy at work to enjoy the benefits of it? Or why bother having kids if you’re going to spend your entire time moaning about them? Why exactly are you trying to get healthy, because you want to or because you think that’s what everyone else wants you to do? Social media is bad for making us think we need to be living a fantastic, shiny life. But quite often the more people post on social media, the more insecure and unhappy they are, it’s just social media ‘likes’ gives them the virtual validation they’re not getting from their real lives.

Sometimes people’s circumstances also mean they don’t achieve what they set out to. Like anyone can get an illness or be in an accident, or be made redundant, for example. Sometimes it’s a lack of motivation and too much contentment in being able to ‘blame’ everyone else. Whatever the reason, goals aren’t meant to be achieved overnight or in the space of a year even. Life is the bit that’s happening now, not the list of achievements you can tick off at the end of it.

So I’m trying not to let myself get stressed about missed opportunities or plans which I’ll fail before I even try. Everyone else is probably feeling a similar anxiety about the prospect of a new year and new outlook, I’m just willing to vocalise it! 😉