Temperature Scarf: February

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

This is the colour chart I’m working from:

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

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

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

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

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

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

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

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

What I Made in February

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

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

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

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

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

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

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

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

And a thistle:

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

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

As did a quaver

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

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

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

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

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

5 Quirks of Having a Rare Disease

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

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

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

2. You become an expert in your condition.

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

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

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

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

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

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

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



Occupational Therapy

When I gained my newest endo, he was the first person to actually think about me as an entire person, not just a walking set of illnesses and symptoms that needed treating. He realised that me waiting around for tests and trying different treatments and being bounced from doctor to doctor in various hospitals was doing nothing for my mental health, self esteem and physical health, so he got me an appointment with the Occupational Therapy department at the same hospital.

I already have physio in the same department (albeit different Hospital) and I’ve been to occupational health when I was still working, but aside from knowing that OT helps with ‘every day’ stuff, I didn’t really know what to expect. But I was quite keen to go because I like to be proactive and if there was something I should be doing to help myself daily, I wanted to do it.

I’ve been going for about a year now, every 3 months. To start off with, I had to fill in a questionnaire about my levels of activities, health, mental health, and perception of my illness, which we revisit every now and then. The therapist was lovely and said that she usually only dealt with people who had a diagnosis of Chronic Fatigue Syndrome /ME but my doctor wanted me to see her because there’s a lot of overlap between ME and adrenal insufficiency in terms of symptoms. It wasn’t going to do me any harm trying it, basically.

I got a bit of a shock when she asked me what I wanted to have some kind of control over or ‘say’ in my life. What did I want to be able to do that I currently couldn’t? No one really asked me that the past few years, it’s been more a case of ‘dont do that’ and very little attention paid to my quality of life. So I said I wanted to work on building up my tolerance to walking, because I could only walk about 30 seconds before I felt like I was going to pass out and things start to get fuzzy.

Since then, I’ve not been overly successful on the increasing my tolerance to walking but it has increased, just not to the level we’d have hoped so far. But she’s also helped me with things like pacing, sleep and concentration. To be honest, she said I was doing an awful lot of the stuff she’d recommend anyway, and that I’m pretty much a model patient (gold star for me!), but it was actually really good from a mental health and self esteem point of view for someone to actually tell me this. I’ve been doing the best I can for my health and someone was actually acknowledging it! I actually needed that reassurance.

The last time I went to her, I’d been feeling pretty fed up because I felt like I was losing more independence rather than gaining it. I was down to washing twice a week and only when my husband helped me. I wasn’t really getting dressed because I had no energy. I was sleeping a lot and not really going anywhere and I kept ending up in Hospital. I told her that psychologically, if I could do a couple of basic things for myself then I might feel better, but my husband was having to work a lot, and because I rely on him for washing, eating, doing jobs in the house, going places, pushing the wheelchair (which we bought) … pretty much everything, I was getting pretty depressed. It was also getting dangerous because I wasn’t able to make myself food so hypos and low cortisol episodes were happening a lot.

Then she started asking me questions- if I had x would this help me? I was a bit confused and said ‘what, like equipment?’ And she said yes.

It never occurred to me that there might be things that could help me at home that the nhs could provide. I always assumed that it was for old people. She talked me through all the various options and we decided that a shower stool and a perching stool for the kitchen might help me get some independence back.

Now I can choose when I wash. Seems like a basic thing right? But mentally it’s so much more empowering being able to decide when to be clean, not relying on someone else. I’m still limited- I can’t do it every day, I have to have a nap beforehand and a snack and it has to fit in with my schedule around my illness but it’s still way more choice than before. And the perching stool for the kitchen means I don’t have to stand when I’m trying to prepare food. It makes it a bit safer, since standing and heat are guaranteed triggers for me. Again, I’m still limited- I only really make soup and put salad in a bowl but it’s still more of a choice than I had before. Choice over simple things, I’ve discovered, is a fundamental right, and I’m actually a bit cross at all the other HCPs I’ve come across who I’ve told these kind of difficulties to in the past and just ignored me- I was still alive, therefore who cares about how I feel about my independence?

It was actually a quick turn around as well. Within 2 weeks of the appointment, the stuff had been delivered. I don’t know if it’s because I’m a young person so I got overlooked in the first place but it’s definitely worth finding out if there are things that the nhs can provide you with to help if you’re in the same situation as me. I was never told anything so I didn’t think I was eligible. But it’s made a lot of difference!

What I Learnt From Modern Family

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

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

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

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

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

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

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

When you’re the unusual of the unusual

Adrenal insufficiency or Addison’s disease does seem to be getting more diagnosed than even a few years ago when I was first diagnosed. Or maybe it’s just I’m paying attention whereas I wasn’t before. Either way, it’s still classed as a rare illness.

The last time I went to my endocrinologist he said I was unusual, highly complex and he’d need to go away and read about me. I’ve been told by various medics I’m complex, weird, an anomaly, mystery…, so I’m fairly used to it and I usually laugh about it.

Except I really don’t like it. I laugh about it because I’m stuck with it and I’d rather find some humour in stuff than be bitter and twisted or upset about it. But that doesn’t mean I have to like it. And everytime I hear someone tell me ‘you’re just a bit messed up really’ in more fancy, medical words, it makes me feel a bit hollow.

Having a rare illness is isolating. Especially in a world of the Internet where you can find a million and one google results about how to make a unicorn piñata in a nanosecond, you can find anything and everything about lots of illnesses. Granted a lot of them aren’t necessarily useful, but you also find communities, forums, support groups and blogs.

Having a rare illness means there’s a lot less of that. The last time my GP googled something about my condition my blog came up in the first 5 results. I felt both pretty proud but also a bit disheartened.

But when you’re the exception to the exception, it’s even more isolating. My GP rang me to sort out my new meds my endo put me on and she didn’t really understand what the ins and the outs were of what I was taking them for. In the end I said ‘that one is for if I think I might die immediately, this one is for if I’m concerned but I don’t think I’m going to die and that’s my daily steroid’. But it means unless my GP goes away and does some research, which she can’t necessarily because there wasn’t a lot to start with, even in the medical world, I know more than my GP. So I can’t ask her for advice.

I’ve got a temperature and a bit of a cold so I need to apply some sick day rules. It’s always a bit tricky anyway, even on the ‘common’ treatment for AI, but I haven’t found anyone who is on the same treatment plan as me, despite asking on Facebook groups. The only thing which kept me from getting stressed about it was the fact that my endo also told me I had brilliant insight into what’s going on and how to manage things. In saying that he at least gave me confidence that whatever I thought was best probably was best. Obviously I have no idea if I did it right or not, but I didn’t die overnight so I’ve still got a 100% success rate!

It’s the unknown, not having anyone with similar shared experiences or having to hunt like mad to find them, the blank looks from Doctors… I’m dreading if I need to go to a&e or call 999 now because they sometimes used to struggle with stuff before- I’ve had to do my own IV to oral maths before and am regularly asked ‘how much of this/how often/is this right?’ kind of questions. (Although I’d rather that than someone treating me blind). Now there’s even more maths and an unfamiliar for AI treatment plan to contend with!

So today I guess I’m feeling the isolation more than usual and the hollowness and emptiness I feel when I get told I’m weird. It doesn’t help I have a ‘normaI’ cold on top so I feel crappy! If I have to be sick every day, sometimes I really wish I had a more straight forward illness, if that even exists!

‘Your Illness Doesn’t Define You’

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

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

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

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

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

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


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.