Why I Started ‘Out With Animals’

It’s a very strange thing when you stop working because of ill-health. The only thing I can really compare it to in any way is it must be a bit like what retirement feels like. It’s the end of an era, you’re admitting that you’re not able to function like you used to, you’re taking some time for yourself and you’re putting your working life behind you. But retirement is expected, and it’s a celebration in some ways as well. When you stop working 40 years earlier than expected like I did, you don’t get people celebrating your working achievements with you or praising your dedication and merits. I didn’t even get a leaving card or a cake. It was a bit like I died- I just ceased to exist in the working world and life carried on for everyone around me.

I get it, to everyone else – family and friends included, not just work colleagues- it’s a case  of people don’t know how to respond. It’s not like leaving for a new and exciting job role, or a change in career, or going back to studying, where you can wish someone luck in their new projects. It’s not like giving up work to go on maternity leave or to concentrate on bringing up your family where you can at least make jokes about the perils of parenthood, while also wishing luck for the future. It’s not even like taking a break because I’ve got cancer or another illness with an end date on it and I’d hopefully go back to work sometime in the future. So people didn’t know what to say, and, truth be told, it’s only now I think about it that I realise what would have helped me at the time.

I realise now that I didn’t fail because I stopped working. But I felt like that was the case because of my feelings about it and because of the way people (inadvertently) made me feel by dodging the subject or the way they spoke to me about it. There should have been something to mark the successful bits of my career.It takes a bit of getting used to, being unemployed, even if you’ve been off sick for a while beforehand. It’s completely different and still comes as a shock. It also takes a bit of getting used to admitting you’re disabled. So until Christmas, I basically was trying to find where I fitted in the world without my job and all of the things I loved about having a job which came with it. Not to mention the sudden drop in income and the change in lifestyle which has to come with it.

I decided to knit everyone I knew Christmas presents, which kept me busy. But then I got to January, where everyone always feels sad and depressed anyway and it kind of hit me. What the hell am I going to do with my life now? The way I saw it, there was two options:

  1. Give up and become a victim-like personality and exist purely as my illness and nothing else.
  2. Find myself a reason to get up every day which gave me some sense of purpose. I can’t work but I can find something to do with my life which makes it actually worth living. I’m definitely not living the way I planned my life to be, but I can’t do much about the cards I’ve been dealt, so I may as well make the game as good a one as I can. Just because I’m incapacitated doesn’t mean I’m incapable. I still have worthwhile characteristics and qualities which didn’t just vanish when I stopped working.

Number 1 is by far the easiest. If people feel sorry for you, you get attention, and who doesn’t feel better from attention? You can use your illness as an ‘excuse’, some people will let you act in whatever way you want ‘because you’re sick’. But it’s more pity than attention, and it’s completely fake. And, if you’ve got a normal lifespan with your chronic illness, other people aren’t going to put up with you acting like that forever.

Number 2 is definitely harder. Most mornings I wake up and think ‘here we go again, I feel awful, I haven’t really slept, I wanted to do X today, but I probably won’t manage. Why is the kitchen so far away to make my breakfast? Can I really be bothered with this?’ In January, it was even worse and I really struggled mentally. So I decided to do something about it.

I sat down and thought about what I’d like to do with all my ‘free’ time if I wasn’t restricted by illness:

  • volunteer
  • support a charity
  • do sports
  • play music
  • start a business
  • meet up with friends
  • read
  • study something
  • Take up a hobby I do every day
  • travel

Then I put a line through all of the ones I can’t do because of illness. Meeting up with friends with no money wasn’t going to be a sustainable thing. Plus they have jobs during the day. Reading is something I struggle with. I’d been supporting Post Pals, a charity which sends post to seriously ill children to cheer them up over Christmas with their reindeer post scheme, so I contacted them and asked if there was anything regularly I could do. They said people send their kids post all year round. I know I like receiving post when I’m feeling poorly and depressed, so I decided to find something along those lines which I could do. I could do it from home when I could manage it with my illness, which was good for me too.

However, as much as sending post to children would give me something to do every now and then, it wasn’t really the regular thing I was looking for i.e. something every single day. What else can I do every day? Knitting. I was doing a lot of knitting. I could also write blogs on my phone. The thing with me and charity work is that I don’t do charity work for the ‘praise’ I get back. I actually prefer doing charity stuff if I don’t get feedback from whoever I’m doing it for, because it makes it feel less like I’m doing it for myself and more like I’m doing it for the ‘right’ reasons (in my head anyway). But, I was pretty isolated, and I knew that whatever I was trying to do every day needed to be something which involved a two-way interaction process with another human being, so that I didn’t get stuck in a depressive spiral.

So I had knitting, Post Pals and writing as my ‘things I can do most days’ list. I’d been making a lot of animals for my nephew because I’d got bored of making conventional things like scarves. The animals were good to make because they only took me a couple of days each and they knit up in sections, meaning I can start and stop them when I needed a rest without getting lost. Except my nephew was quickly developing quite a zoo in his bedroom, so that couldn’t continue much longer. But I thought ‘if he likes animals, then other kids will too. Maybe I’ll make some for the post pals kids‘. Another thing which I realised, is that I always have some kind of stuffed toy in my hospital bag because it gives me some kind of comfort when I’m feeling vulnerable in a hospital. Now, if I like to have something pocket sized to take with me as a 30 year old, those kids from Post Pals definitely will. What if the animal was their friend? And wrote a letter to them to say hello when they got sent to them? Or, what if the animals talked about what they’d been up to before they got sent to the child, and then the child could introduce them to their world?

Basically, I came up with: knit an animal (daily habit), persuade a friend to take out an animal and take photos of it doing things (2 way interaction for me), write a story (daily habit), post the animal and story off to the post pals children (charity). My doctors, especially my psychiatrist all heartily approved of me doing this.The friend who took the first animal out for me works in comms, so suggested social media to get more people involved, and because she found the whole concept quite amusing! I was having to work hard to convince people that they wanted to take a stuffed animal out with them places and take photos of it ‘pretending’ to be on an adventure (people thought I was a bit nuts), so I set up twitter, instagram and Facebook profiles, as well as an online blog for the stories, under the name ‘Out with Animals‘.

I was quite enjoying being sent photos of the animals doing fun things (and seeing what my friends were up to) and using my brain a bit to write stories- it appealed to the creative side of me that had kind of got covered in dust since stopping music teaching. Then around Easter time, a lot of people I know had holidays planned and, instead of me thrusting an animal on them and begging them to take photos, suddenly a lot of people asked if they could take an animal with them. And I’ve had some really imaginative photos from lots of people! I started using the social media pages I set up to ‘chat’ to places the animals visited- I had a lovely chat with Monarch Airlines about Lizzy the Lizard’s travel sickness from having eaten too much Easter Chocolate, I managed to get Eric the Elephant a City of Culture Badge by tweeting them about his adventures and the Kennedy Space Centre tweeted me back about Oscar the Octopus’s attempt to be the first octopus in space. Not only were the animals getting more and more adventurous- they’ve been to places all over, from Italy to Japan, but it really was helping me and my mental health. Around the same time, another charity called Help for Dominica emailed me and asked if I could send some animals over to Dominica to help with their school education and outreach programmes following Tropical Storm Erika. That was also pretty exciting, and I’ve sent 7 out there so far.

Now I’ve constantly got a ‘list’ of animals that people have requested to take out, and I’ve also had a few random strangers who have come across my page ask to be involved either by crocheting animals or because they want an animal to take out. Groups and organisations like primary schools, Scouts, Rainbows, Hospitals, the army, a mayor, and the police have asked to be involved somehow. That’s pretty cool for an idea that came out of me sitting in my PJs knitting one day in January!

Making animals is in no way filling the massive hole that teaching and having a job left. But it’s something I can do which helps other people, gives me some kind of a sense of purpose, and stops myself from hiding away and exacerbating my illness by isolating myself. I can do it at my own pace and stop when I’m having rough patches with illness. If you follow my social media, I tend to do an update before 8am when I’m doing my whole ‘here we go again….’ monologue- that’s intentional. It’s the hardest time of day for me, and even when I’ve been in hospital, I’ve still managed to post an update. It means that I can feel like I’m contributing to life even though I’m not out of bed yet and everything is really hard work. I’ve achieved something even if I manage nothing else for the rest of the day. It’s only a small thing, but it’s quite important for me to be able to do it. It’s not the same as having a career, but I enjoy doing it, and it’s a lot better than giving up and letting my illness take over completely. If nothing else, I’m proud of myself for that!

Emergency Medicine and AI: Why We Need More Awareness

This is intended as an awareness post, not me using it as an opportunity to slag off the NHS or particular members of staff. The main problems I encountered recently in a&e were because of a lack of awareness, not because of a lack of skill. There were many people who were on my side during my recent hospital admission, and I was happy with the way senior staff eventually handled my issues. However it was probably the most horrendous admission to date and is, sadly, the way that a lot of patients with Adrenal Insufficiency are treated when accessing emergency care. Hence the need for an awareness post.

I felt ill fast, oral HC wasn’t shifting it so I rang 999. The dispatch found my red flag and said I was on a red 1 (fastest call out) but there was a high number of users so she couldn’t guarantee how long. I decided I’d better do my injection myself to be safe but the crew arrived before I’d had time to draw it up fully and administer it so were able to give it to me IV. That’s a super quick call out by the way- 4 minutes from me picking up the phone to paramedics on scene. If I’m in suspected adrenal crisis, things are supposed to move that quick. An example of the system working at its best and most efficient.

I think their speed and our joint decisions possibly might have saved my life that night, because when we got to hospital is when it started to go horribly wrong.

I was triaged incorrectly on arrival

This was the major problem. An administrative error/lack of knowledge nearly killed me. The wonderful paramedic rang ahead to resus to let them know I was coming in but resus said that because the crew had stabilised me, I could avoid resus providing I stayed that way by the time I got to hospital. Yep, we all agreed that was a good plan. The paramedic handed over- it was the best hand over I’ve ever had- but the receiving nurse hadn’t heard of adrenal insufficiency or addisons and didn’t write it down and triaged me as ‘abdo pain’ instead, which was one of my symptoms, but not the cause. This meant that instead of having immediate bloods, fluids, IV HC and pain relief, I didn’t get anything and was put low down on the priority list, assigned to a very junior doctor with very little experience.

There was a delay in bloods

It took them an hour to come and bleed me, and that hour is crucial. A suspected heart attack patient wouldn’t have to wait that long, neither should I. They also should come back asap to either rule in crisis or rule it out, but it wasn’t prioritised because my chart was wrong.

I wasn’t given pain relief for an hour and a bit.

This is bad for any patient but particularly bad for me. Pain drains cortisol fast and I already didn’t have enough on board. The doctor wouldn’t write any up for ages so the nurses couldn’t give me any.

The doctor dismissed me to the nursing staff

I complained of feeling very unwell a number of times. I kept telling my nurses I needed more IV HC but they kept coming back saying ‘the doctor says your BP is fine so he’ll come when he’s ready’. I kept saying it wasn’t and tried to explain how my BP goes up rather than down when I’m acutely ill. But the doctor refused to take me seriously and kept passing messages via the nursing staff, making judgements based on my incorrect chart and his textbook knowledge.

I had a drug interaction/sensitivity which wasn’t dealt with

One of the anti sickness IV meds made me feel really ill and I blacked out for a few seconds. The nurse immediately told the doctor but he wasn’t bothered. This should have been followed with an IV dose of HC stat to counteract the further stress to my body. but it wasn’t given despite me asking for it. I hadn’t had an anaphylaxis reaction, which is what the doctor was concerned about, but he wasn’t aware that any kind of reaction in a patient with AI causes us huge complications without appropriate treatment.

I developed a temperature which justified an IV dose

But again, my request was ignored because the doctor wasn’t aware of sick day rules.

I was refused IV HC despite clear, clinical reasons to back it up.

Which is unacceptable. I tried to get my HC refusal letter out, given to me by Addisons U.K., which basically says ‘I have made you aware that I have a life threatening condition which you have refused to administer medication for. Giving me IV HC won’t cause me any harm in the short term but could kill me if I don’t have it’. But I must have handed it over in my pack the last time and forgot to replace it- that’s completely my fault. But the letter is meant to be used as a last resort, so I shouldn’t have remotely needed to have got that far in the first place.

The doctor tried to cover up his mistakes

Some doctors find it hard to admit when they’ve made a mistake and plough on regardless. Which might work if you’re not a frequent visitor to a&e, but doesn’t when you know how everything is supposed to work. When he eventually came to see me, he didn’t take a patient history. He didn’t ask me about other medical conditions. He said he’d run a set of bloods but because I was triaged incorrectly and he didn’t come to see me before ordering them, they didn’t include ones that were appropriate for me, but for abdo pain instead. Aside from that, this admission was caused by emotional stress not infection, so that won’t show up on the blood tests he’d run. He then waved the chart at me and declared me fine and that I could go home. Basically he had his plan worked out based on my chart and I had to fit into it. I’d used my injection, meaning I no longer had one, so I said I was worried I’d decline again and wouldn’t make it back to hospital in time if I needed it. His reply was awful- I’d be fine because I had my oral meds. No. Oral meds won’t save my life. And at this point I couldn’t sit up let alone walk.

He insisted he’d followed addisons protocol and gave me a patronising lecture as to why he was right and I was wrong. Except he hadn’t followed any addisons protocol at all, which I pointed out. His reply was ‘I’m not taking responsibility for this, you only became my problem 10 minutes ago’.

Stress makes me more sick so by now I was a big mess. And feeling terrible.

I asked for the nurse in charge who went and got the most senior doctor in the department. She apologised profusely many, many times and tried to help sort a plan for that night and for the future. I liked her thinking, she was fantastic. And I got my IV HC stat. She started off backing up her colleague, which is to be expected, but once I’d explained she said she hadn’t been told the full story. In short, people were either not communicating or they were choosing what to communicate to each other.

If junior doctors are reading this (or any HCPs for that matter), I don’t expect you to know everything and I’m happy to help fill in the blanks. But you can’t and shouldn’t rely on a chart telling you everything is ‘fine’ when the nurses are coming and telling you it isn’t. Take responsibility when you mess up- yeah you’re liable but patients have a lot more respect if you say you’re unsure rather than trying to quote a protocol which you’re getting wrong anyway and definitely didn’t follow. Patients who go to hospital a lot know a lot about their illness, don’t patronise us. Don’t call me ‘a problem’. What a way to show compassion! Bite the bullet and apologise on behalf of your colleagues/whatever went wrong because a lot of healthcare is handholding- if he’d apologised I maybe wouldn’t have eaten him alive so much. Yeah it sucks, but say something like ‘I’m sorry you’ve had such a rough night’ or ‘I’m sorry you felt your care hasn’t been very good, what can I do to make it better now’ if you can’t bear to actually apologise. It’s apologising but not actually taking liability for it. And it goes a long way in improving patient experience.

I shouldn’t ever have to say the words ‘I could die if you don’t listen to me’, which I did say a lot that night. Why wait until I’m critically ill because you can’t think outside the box? Think about the bigger picture. I’m not just a bp and a set of bloods. In 19 years of having worked for the ambulance service, I was the paramedic’s second AI patient and she was genuinely gutted that her student was on his day off because she wanted him to have learnt about it. As a chronically ill, rare patient, no one is expecting you to diagnose or wave a magic wand. But you need to treat the patient, not the chart. If you can’t see beyond that and aren’t willing to learn, to be blunt, you shouldn’t be a doctor.

I’ve been incredibly lucky in that I usually have very good care at that hospital and that night was a blip. But that’s unfortunately how a lot of patients with AI or are treated a lot of the time. It’s not because the staff aren’t skilled enough to be able to manage it, it comes down to a lack of awareness of the condition and how we can deteriorate very quickly. There is nothing more terrifying than having to argue for drugs you need to stay alive when you feel like you’re going to lose consciousness at any second and are panicking that if you did pass out, the staff wouldn’t know what to administer or why. A little bit of education would go a long way in treating this disease.

I don’t like ending on a negative note, and actually I’ve had some very positive A&E experiences. Read this post to see how good emergency care for Adrenal Insufficiency can be 🙂

‘Let’s Reduce Your Steroid Dose’

No, let’s not. When I hear that from a doctor it makes me want to jump up and down and have a strop. Unless they’re making an informed decision, which they’re usually not. This was from an endocrine registrar at my 6 month review. Cue lecture from him about steroids being bad. It’s always the same:

  • ideally we want you to be on 10/5/5. You’re currently on a much higher dose.
  • steroids can cause you problems with your blood sugar and put you at risk of diabetes.
  • steroids make you put on weight. You’ve put on a lot of weight since your last review.
  • they also make your bones weak and you’ll end up with osteoporosis.
  • it’s not good for your heart to be on high doses of steroids.
  • you’ll have other problems with your stomach and teeth crumbling because of steroids.
  • you might get cushing symptoms (too much cortisol).

To a lot of doctors, steroids are BAD. End of. I agree, if you’re taking them to reduce inflammation or swelling or following an operation or for something temporary. Long term steroids are bad, particularly at high doses and you want to taper off them asap, otherwise they can have bad consequences for your adrenal cortex. That ship has sailed! However, there isn’t another treatment for Adrenal Insufficiency currently, which means steroids are necessary, despite side effects. We’re only replacing what our body doesn’t naturally make.

So I took a deep breath and started my well rehearsed speech as to why I am not going to reduce my steroid dose from what it currently is unless there’s a better reason than the doctor feels like it.

You should be on 10/5/5

12.5mg of Hydrocortisone is the survival dose, which means lots of doctors see 20mg (10/5/5/) as them being ‘generous’. However, 10/5/5/ doesn’t take into account different people with different weights, metabolisms, day to day activities, other illnesses… It’s how old school diabetes used to work- everyone had to take the same dose of insulin and get on with it. Except now they can change their insulin depending on what their blood sugar is doing because doctors have realised how stupid that advice was and how crap diabetics’ quality of life was like that. Like diabetes, Adrenal Insufficiency isn’t a one size fits all, but modern medicine has not caught up with this yet. So yes, I’m on a higher dose, but I can’t get out of bed on 10/5/5.

Problems with blood sugar

Well, I’m already Insulin Resistant because one of my previous endocrinologists didn’t listen to me and my ’10/5/5 isn’t enough’ speech. So to compensate for the lack of cortisol in my body and to stop myself going hypoglycaemic (and ending up in a coma), I had to eat a lot to raise my blood sugar. Like every 10 minutes eating. So now I’m insulin resistant. Steroids make your blood sugar go up, and actually, my blood sugars don’t ever go above 6, even after I’ve eaten, which is well below ‘diabetes concern’. So I’m currently more at risk of being hypo- rather than hyperglycaemic.

Steroids make you put on weight

Yes they do in a lot of people. However, I was steadily losing weight on my Low Carb High Fat regime, until my GP said the fateful words ‘let’s reduce your steroid dose by 2.5mg’ in February and then I started putting on weight again. Why? Because I started having hypos, which you have to treat with food. Plus I feel like I’m going to pass out and am hungry all the time unless I eat. Whereas before, I wasn’t snacking between meals or eating at night. Now I’m up 2 or 3 times a night feeling awful. If I take more Hydrocortisone, I go straight back to sleep and don’t need to eat. Which would you rather- should I eat more overnight or take more hydrocortisone? Because you’re saying both are bad, but I’d quite like to avoid dying. Besides, now that I’ve put on weight again, if anything, my steroid requirement will have increased rather than decreased. So decreasing it would be doubly bad.

They make your bones weak.

Also true. I already have osteopenia (pre-osteoporosis). However, do you know what else is bad for your bones? Not getting out of bed and moving. And also putting on weight. So on a slightly higher dose I can do my physio and lose weight, and eventually my overall steroid requirement will reduce and I might even be able to manage on 10/5/5. Surely that extra 2.5mg in the short term isn’t going to make that much difference to my already weakened bones? But being able to move my joints and lose weight will definitely have a positive impact. Besides, what’s the point in having slightly stronger bones in old age when I didn’t manage to get out of bed for 30 years…

It’s not good for your heart.

You could say that about many things. Alcohol and smoking aren’t good for your heart but people still do it. I’ve been adamant that there’s something weird going on with my heart for about a year, especially overnight, and how this is linked to my steroid dose, but got told a few times that I was ‘just anxious’. My sleep study showed I have an irregular heart rhythm while asleep, so not due to anxiety. When your electrolytes are ‘off’ (low cortisol), it can cause a funny heart rhythm. And I don’t get that heart rhythm if I take more steroid. So maybe my steroid dose isn’t actually high enough?

Other problems

I could get a stomach ulcer just because I get a stomach ulcer. These things happen to ‘healthy’ people too. If I’m going to get these things because I’m going to get these things because I’m taking steroids, they’re going to happen regardless of whether I’m on 10/5/5 or my current baseline.


Has anyone tested my blood level to see if I’m remotely near cushingoid? No? In which case we’re not changing the dose ‘just in case I get cushingoid’. If my blood work suggests it, then I’ll reduce my dose, but not otherwise.

So yes, I agree that being on the lowest dose of steroid which my body needs is definitely a good thing. But I’m not decreasing it now when you don’t have any blood work to support it and I’m still very symptomatic and have a poor quality of life as it is.

I obviously didn’t say it in as sarcastic a tone as I’ve written it, but I have this argument so many times a year it’s getting tiring. This doctor was actually pretty amenable and agreed with me after I made my points. A lot aren’t though, which is very, very frustrating. I have absolutely no issue if the doctor is making reasonable, informed judgements based on my symptoms and blood test results. But most aren’t- they are adamant that 10/5/5 is *the* dose I should be on because anything over that is bad because steroids are bad. And that’s what they’re basing their decision on, which isn’t right. There’s a bigger picture here. Yes steroids are bad, but they’re also what keeps me alive and living, so actually, steroids, to me, are pretty damn good.


Adrenaline rushes are currently driving me mad. People who have Adrenal Insufficiency can still produce adrenaline. It’s a myth when people assume that low functioning adrenals means no adrenaline. This is because there’s two bits which make up the adrenal gland and cortisol is produced from one bit and adrenaline from the other. In adrenal insufficiency, it tends to only be the cortisol producing bit which stops functioning. 

So anyway, adrenaline. If you don’t make cortisol and suddenly come into contact with a situation which would require a lot of cortisol fast e.g. An argument or accident, the body responds by flooding your system with adrenaline instead to keep you alive. Which is pretty nifty that it can do that and compensate rather than collapsing, but it’s a bit tricky to manage.

What should happen is that cortisol and adrenaline work together to keep you safe and functioning. What happens if you’ve got AI is you get the adrenaline rush, don’t get the cortisol so then when the adrenaline starts to leave your body, the body recognises that there’s something missing (cortisol) and gives you more adrenaline to compensate. Hence the adrenaline rush. 

It’s a bizarre feeling- I spent periods today switching between ‘I feel GREAT, I’m going to go for a walk/do all the chores in the house/maybe I’ll do some yoga’ and ‘oh dear god I need to lie down right now otherwise I’m going to pass out/throw up’. I didn’t go for a walk or do the chores because that would have made everything a lot worse, but I did feel like I was able to conquer the world at the time! It’s not a sustainable state though…

How do you make it stop? This is where a cortisol testing metre would be handy, like diabetics can test their blood sugar. My sudden onset of stress was actually on Tuesday but my body is still feeling the knock on affect of it now 3 days later, partially because I keep getting angry about it in my head and adrenaline gets produced. At the time, I got pretty close to calling an ambulance and was pretty ill, but managed it with extra oral hydrocortisone. But it’s still a guessing game and the dosing is never going to be 100% perfect. One way to counteract it is to take a small bump dose or updose of hydrocortisone, which I’ve done occasionally this week. But the more you updose or change your dose for adrenaline rushes, the more your body gets confused with what level of cortisol it can work with and sometimes it just dumps even more adrenaline instead. Another way is by lying down when adrenaline first starts and trying to relax and focus on keeping very calm and still. Easier said than done- like I said, I felt like I could conquer the world! Would you be able to sit quietly if you’d just done something like a parachute jump? Not really, you’d be buzzing from the adrenaline. It’s the same for me when I get an adrenaline rush. 

As it’s currently 4am and I’m waking up every hour with adrenaline rushes, despite my meditation and trying to be zen, I’m going to take a small dose of hydrocortisone. That’s another myth for AI patients- taking steroids at night will keep you awake. It doesn’t because we’re replacing what our body should be making while we’re asleep anyway, not adding on extra on top of natural cortisol production. Hopefully it’ll all level out soon and I can go back to my ‘normal’! 

Communicating With Other People

I know this is true of other people with mental health conditions but something I’m having arguments in my head a lot at the moment is how I communicate with other people. There’s two main ways I interact with people: face to face and via technology.

Face to face 

I like meeting up with people but social situations make me anxious. Physically, it’s a lot more tricky for me to meet up with people because of the limitations imposed by my illness. But I sometimes find it quite stressful because I don’t remember half of what I or other people say. Which shouldn’t be a problem, except for the fact that I usually spend a lot of time afterwards over-analysing things that have been said or the way I perceive someone’s body language and somehow manage to make the situation appear in such a way in my mind that I’ve done or said something ‘wrong’ or to upset people. Even when I haven’t. Rationally, I know this. But because I can’t remember much of the interaction I don’t feel like it.

*sciency bit* This is something which lots of people with anxiety experience: over generalisation, negative filtering, emotional reasoning, blame… I have an app which talks me through it all. However, I don’t make the right hormones which help counteract the feeling which means that sometimes no matter how much CBT I do, the feeling doesn’t go away- the chemicals don’t and can’t kick in. I don’t feel any calmer for it.

Via technology

I love social media because I can feel connected even when I can’t get out of bed. Except social media is fake and can mess with your head if you’re not in the right mindset. People only put up what they want you to see, but it can be difficult to remind yourself of that on particularly bad days. Instead it’s easy to fall into the trap of thinking that everyone has amazing lives and I don’t. Some days I log my phone off completely and don’t go on social media at all.

Another great thing is text message or messenger. Except it’s not that simple. I’m not unreasonable, I know that people don’t reply to messages straight away because people have things to do, and I don’t expect people to be at my beck and call. But if I can quite clearly see someone has read the message, or are online and not reading/replying, or just not replying full stop, I find it hard to deal with on bad days. I over-analyse and assume it’s something I’ve done wrong, a bit like after face to face. So at times when I actually need interaction when I’m feeling low, I find it easier not to text or communicate with anyone because then I don’t have to worry about people not replying or answering. Some days I don’t answer my phone when it rings because I’m too stressed out by the thought of it. The advantage of text is it’s all written down so I know exactly what I’ve said. The disadvantage is you can’t see people’s facial reactions. Rationally, I know people don’t reply for a bunch of reasons, one being they forgot or had to do something else. But I rarely manage to convince myself of this on bad days.

Now, if you’re a mentally healthy individual, you’re probably reading this and thinking ‘what an idiot’. I admit, it sounds stupid. But that’s the hard thing with mental health, you feel stupid so you don’t talk about it, and by making it a taboo subject, you feel more stupid. My Dad said once ‘you’re making the mistake in thinking that everyone thinks about things afterwards in as much detail as you. Chances are, they can’t remember what they said either’. He’s right, and he also probably doesn’t remember saying it! It matters more to me because I can’t recall what was said even if I wanted to because I feel so foggy, so I feel at a disadvantage and like I’ve lost control. It’s also foolish to take responsibility for everything that happens in a conversation- whether it’s a good or a bad one, it still takes more than one person to share a conversation so they’re just as much responsible for how it pans out. 

I try to make a point of replying to every message I get even if it’s just with a ‘lol’ or an ‘ok’, unless I’ve got a really good reason not to, because I know how anxious it makes me feel if I’m having a bad day and it’s the other way round. Sometimes I genuinely forget, like if my phone rings in the middle of me typing or I fall asleep (and usually drop my phone on my head), so I’m sorry if that happens. I’m well aware that one of the ways to help myself is to break the cycle and challenge my thinking, but it can be pretty hard work and you have to chip slowly away at it to be successful long term rather than trying to bulldozer it in one go. If you do have a friend who’s depressed, chances are it’s when they go quiet that they need a chatty text message, rather than when they’re actively posting on social media or sending messages. 

Getting Anxious About Consultant Appointments

I’ve got a few appointments coming up with some ‘big’ doctors. They might not actually come up with anything at these appointments (lots of tests planned) but they’re ‘big’ ones in the sense that I won’t know more than they do about endocrine-y things- they’re the big bosses. That makes me sound like I don’t have much faith in my other doctors, who are also helpful, but I do spend a lot of time in some appointments explaining what my current diagnosis is and how it interacts with other bits of the body because they don’t understand it. Not really the way it’s supposed to work! 

I get anxious about consultant appointments but not for the reasons you might think. 

Getting ‘bad’ news

I’m not worried about bad news, in fact the best appointments I’ve had have been the ones where I’ve been given bad news. There’s actually something tangible to work with then! The one that stands out most in mind is where I got told I needed to make permanent life changes as my current life was killing me. It was a relief to hear this because it meant I had something I could work with and take control of rather than trying to keep it all going. If you feel sick already, you’re being told something you already know, it’s not a surprise. 

So you might be thinking if I’m not anxious about the thing that most people get anxious about, what do I have to worry about? Basically, I have a similar level of anxiety to how people feel about having a big meeting with clients or when they’ve got a business trip planned: sense of anticipation, the desperate need for everything leading up to it to go well, stakes are high kind of feeling. Just like flying internationally, going to the hospital (for me) feels a logistical nightmare. 

Getting up early

Most of my appointments are morning clinic ones, and even if they start at 11am, I still have to be up and functioning a lot earlier than normal. Which I struggle with. I also have to take tablets and eat at an earlier time, which messes with me for the next couple of days. 

Travelling to the appointment

I can’t get myself to the appointment which means I have to rely on someone else taking me. It’s not a big worry, it’s just another thing to factor in. 

Getting to the appointment

Two things which tend to happen when I have to get up early is I need to wee every 10 minutes and I also get a terrible stomach ache. So the journey is usually uncomfortable for me.


Lots of people hate parking in hospitals because it’s one of the most irritating things in the world. There are never enough spaces and you have to leave an extra half an hour because it can take that long to find a space. But I also have to factor in I can’t walk far, and hospitals are about the only place your disabled badge is useless (because there are a lot of disabled people). 

Walking to the appointment

I have to leave extra time to get from the car to the appointment because I’ll:

A) need the toilet so have to go there first 

B) need a few rests to get to the right department 

C) want to leave time to cool down because I’ll be sweating a lot by now and don’t want to see my doctor looking that disgusting 

D) I’ll drink a lot of water to cool down so I’ll need to go to the toilet again. The more I walk to the toilet, the more hot I get, so I drink more water…

Sometimes I use a wheelchair but they’re like gold dust.

Booking in

Outpatient departments are noisy and tend to be open places with lots of clinics. I find that level of noise hard to deal with so talking to the receptionist can sometimes be tricky if they don’t talk clearly enough. I also will struggle to stand in any type of queue after walking that distance. 

Plus I have lots of appointments. So part of me is always worried while booking in that I’ve got the date or time mixed up, or I’m in the wrong hospital. 

Doing obs

You always have to have your BP, heartrate, weight and height done before clinic. My BP and HR are always high in clinic partly because I feel like I’ve run a marathon, partly due to white coat syndrome. My weight is a sore spot: the person doing the obs doesn’t know me and doesn’t know my case but there’s a ‘make every contact count’ policy, so I nearly always get told I’m overweight with a pitying/disapproving glance. Which leaves me wanting to scream at them because my weight is part of my complex medical problem which people are still trying to work out. Instead I listen to their lectures, smile and walk out quietly seething.

Seeing the doctor

So I’m already ridiculously wound up from everything before I even get to the doctor’s room. I worry that the doctor won’t be able to help me because they’re waiting for further input from other teams, need blood work or because it’s a waiting game thing- the thing with endocrine disorders is that you have to keep testing because things change all the time, even on treatment. I’m always anxious they ‘won’t believe’ me, even though I tell the truth and am a good patient. I don’t always trust them if they get fundamentals of my condition wrong. I worry about getting fobbed off. I feel bloody knackered because I basically need a science degree to understand half the words they’re saying- endocrinology is not easy. I get the most anxious that I’m just going to be told to get on with it (which happened a lot in the beginning), and left to deal with it by myself. Or that the next review will be in 6 months

I always go with the hope that something will change or there’ll be some new diagnosis which will mean a step forward, knowing fine well there probably won’t be. But it’s good to try and be a bit positive! It’s a bizarre feeling to leave the appointment disappointed that there’s ‘nothing wrong’ with you (that they can find currently), because what it really means is that there *is* something wrong but they haven’t found it yet. Which means you have to go back to feeling awful and despondent and wait for the next round of tests and appointments to start the cycle again. Realistically, I’m not going to miraculously feel better until someone works out everything that’s making me ill in the first place. And it’s a giant puzzle where different pieces keep going missing. 

There are lots of challenges and anxieties for me due to the logistics of going to an appointment. But the hardest bit is walking out the door knowing that there’s very little chance of things improving for another X months at least. The clock starts again and all you can do is concentrate on one day at a time. I go to a lot of medical appointments so the idea of seeing a doctor and hearing news doesn’t make me anxious by itself. It’s what they’re not able to tell me because I’m a bit of an anomaly and how they can’t help me which I worry about the most. 

Why Chronic Illness is a Bit Like Being in Prison

Bear with me with this one… I haven’t been sleeping well at all recently which means lots of midnight Netflix and crocheting sessions for me. My documentary of choice at the moment is a series about inmates in different American prisons/jails (there’s a difference, I’ve learnt!) and their experiences of being incarcerated. Not very light hearted, but I actually find ‘people watching’ fascinating. Plus I spent most of my career working with pupils who were ‘at risk of offending/reoffending’, so it’s doubly interesting for me.

But some of the stuff inmates were saying in interviews didn’t just resonate with me in terms of thinking about my ex-pupils. Now, clearly I do not have lots of gang tattoos, or a gang for that matter, unless you count my crocheted animal menagerie, but I did find myself empathising with them because of the situation I find myself in- being chronically ill. Here’s how having a chronic illness is a little bit like being in prison…:

You have a long wait and a bunch of ‘hearings’.

Prisoners have to jump through the hoops of the justice system, and a lot of that time is spent waiting for a 10 minute hearing, to then spend more time waiting. Which is a lot like being on the waiting list of hospital tests and doctors’ appointments. I’m talking about when you’re home all day every day feeling awful from chronic illness, not managing to maintain most of your lifestyle but having an upset stomach or migraines sometimes. Your life is on hold until the next ‘bit’.

Then someone tells you your fate and you get sentenced.

After all this too-in and fro-ing, someone hopefully has the balls to turn around and tell you how long you’re going to be dealing with the illness for i.e. your sentence. It could be a few months, a few years or life. The one advantage of being a prisoner is that they usually can’t wait to tell you the verdict once they have one, whereas with chronic illness there’s a lot of beating around the bush and reading between the lines involved- doctors don’t like committing to things unless they’re 100% sure, which doesn’t happen often.

You might get ‘not guilty’ and get to walk free.

Yep, you’ve got a long term condition, it might be forever, but take your meds and you’ll be able to get on with your life, except maybe for a couple of periods of illness.

You could get probation.

Which means you’re not out of the woods. You’ve had a scare e,g a heart attack, but make some lifestyle choices, take some meds and reflect on how lucky you’ve been and you can eventually get back to your life before with some changes. Except your offence will be taken into account in any future cases e.g. if you have another heart attack, you will probably end up doing some jail time.

Jail Time

Jail is where you go where you’ve either not been fully charged or you’ve got a really short sentence not worth sending you to prison for (according to my documentary). You’re sick for a little while, you might have to go to hospital a lot and have some nasty treatments, but once you’re done you can say you’ve ‘beaten’ the illness. Sometimes illnesses come back (reoffend) and you have to do a similar thing again.

You might get a long sentence.

Of a few years or even life. Except it’s not ‘without parole’, so you’re secretly hoping that someone somewhere has made a massive mistake and will release you from prison and say you don’t actually have the illness or that it’s made some dramatic improvements. Or that medical science progresses and gives you a new treatment. It’s a long shot, but, just like the prisoners, you have to have something to feel hopeful about to get you out of bed. And, just like them, you make the most with what you’ve got and take each day as it comes.

Or you could get Life Without Parole.

One guy said ‘I’m never getting out of here, so what’s the point in trying? Why bother being good when it won’t make any difference to my sentence?’ I found myself agreeing (I hear you bro’, in my best gangster accent!). Some of us are stuck with our illnesses forever. They won’t get better. It’s bloody miserable thinking that ‘this could be it’. In my case, I doubt medical science will come up with anything while I’m still alive since the current treatment is archaic enough already it would take miracles to come up with something life altering. Plus no one cares because it’s rare. You have to watch the ‘free world from your window’, which is what another inmate was doing. He watched cars on the highway all day.

Death Penalty.

Obviously we don’t have this in the UK. But it was weird- a lot of the death row inmates said they hated being there, they had no quality of life, they spent 23 hours out of 24 in a cell by themselves with next to no possessions or human interaction, but they still wanted to avoid the death penalty and live like that for the rest of their lives. I have some human interaction, but I spend a lot of time by myself during the day, can’t go out myself and don’t have a lot of freedom because my illness limits me so much. It’s hard work every day, but I still want to avoid the ‘death penalty’ too.

You get a lot of visitors to start off with.

The inmates found that a lot of their families came less and less frequently the longer they were in prison for. They didn’t really know why, it just happened. It obviously puts a strain on the family outside of prison too. There are a few core individuals for each inmate who keep coming, but very few had regular visitors once they’d been there 5 years.

People take sides.

Inmates found that people either fell into the ‘we think you’re guilty/innocent’ camps. There was no in between. It kind of is the same with chronic illness, since a lot of people seem to think that chronic illness is something you inflict upon yourself, which it isn’t.

You suddenly start to appreciate little things.

One inmate got moved from max security to a slightly lower level. He’d been in isolation for 10 years and finally was able to have a roommate and access to the commissary. He loved drinking ice water because he hadn’t had that option in max security. I’m kind of the same with some things now. I like being able to make my own cup of tea because it’s one of the few things I can actually do for myself. And I like tea. I feel a sense of achievement from finishing something I crochet in a way I wouldn’t have done before.

You don’t have any choice but to keep getting up every day.

They get up to the same routine. I get up to the same routine. There’s no spontaneity. You feel trapped. You get communications from people out in the real world and wish you were there too. Thankfully, I don’t have a prison warden breathing down my neck. And I don’t have to sleep in a dorm.

Here’s the thing though. What I have learnt from this programme is the fact that you can actually just be in the wrong place at the wrong time. People make bad choices and end up in prison e.g. did you know that if a murder happens at the same time as you’re committing a crime, even if you had nothing to do with it, you end up being charged for that murder too? So one woman was robbing a shop to feed her kid and someone else came and shot the owner. He got away, she didn’t. She got charged for murder. You can equally have an accident which leaves you unable to walk because you decided to do cliff diving. And, let’s face it, everyone is kind of bending the ‘law’ to suit themselves, so it’s just a matter of time before you get caught e.g people smoke, drink alcohol or eat unhealthily but because they haven’t had to worry about the consequences of it yet, they don’t- everyone assumes it’ll happen to someone else.

But illness doesn’t happen to ‘someone else’. It happens to a lot of people, it just depends on the degree and the sentence. It’s great if your illness is short lived, like a year or two even (even if it is scary), but for those of us serving long sentences, it doesn’t get any easier every day just because we’ve been serving time for it longer. However, there are some inmates and some people with chronic illness who are determined to make the best of what they’ve got and find other ways of enjoying the freedoms they do have. Every little counts.

If I suddenly start expressing a need for gold teeth or trading food stuffs for favours with people then someone needs to at least try and bail me out. For now, I’ll keep getting up every day, watching the world via social media or my window and crocheting my gang members.

I Don’t Have Sleep Apnea…

A couple of months ago, I did a sleep study to see if I have a condition called sleep apnea, which leaves you with interrupted sleep and fatigue. I should say that the results came through a lot more speedily than I’ve written this post! 

The test showed I don’t have sleep apnea. Good, right? Well, yes and no. Sleep apnea is relatively easy to treat, so if I did have it, I could have probably started treatment by now and might be actually sleeping a bit better, rather than being awake at 3am not being able to sleep like I am now! Instead, I’m now 3 years into only getting 3-4 hours of broken sleep per night, if that. 

So it’s back to the drawing board. My GP came up with some theories as to why I wasn’t sleeping a while ago: 

  1. Sleep apnea
  2. Anxiety
  3. Steroid dose too high
  4. Poor sleep routine 
  5. Something endocrine related

I have to admit being a tad frustrated by the entire process. Everything feels a lot worse when you can’t sleep, particularly if you have a condition where you feel fatigued all the time anyway. I’ve been pretty sure for the past 18 months that it’s endocrine related e.g. Adrenal, thyroid or blood sugar, but really struggled to get anyone to listen to my theory for a long time. 

I can see why my GP put anxiety on the list because of the way I wake up- suddenly, sweating, feeling sick, heart beating funnily. But I knew it wasn’t anxiety related because it really doesn’t feel like anxiety. I also knew it wasn’t because my steroid dose was too high, but my steroid dose is something my GP and I have disagreed about for a long time. To be fair to her, I’m not a straight forward patient and I have 3 endocrinologists now who are all scratching their heads. So really, she’s just doing her job by being thorough and looking at all possibilities. Some patients on steroids do have issues sleeping because it keeps them awake. However, I can go to sleep fine but wake up later. I wouldn’t be able to go to sleep in the first place if it was due to steroids being too high. My symptoms also improve and I go back to sleep a lot quicker if I take 2.5mg hydrocortisone when I wake up. I’m not allowed to do that every night though currently. I have to get up to go to the toilet a lot overnight, which also points to endocrine. I don’t have a poor sleep routine either, but it’s tricky to justify that one to people, since lots of other patients lie about this so there’s already a precedent. 

The sleep study wasn’t a waste of time though. It picked up that I have restless sleep, and that I have an irregular heart rhythm and slightly decreased oxygen sats while I’m asleep, both of which I know happen when I’m low on cortisol. Whichever way you look at it, anxiety can’t be the reason my heart rate and o2 are a bit ‘off’ while I’m asleep. 

Which brings us back to it possibly being something endocrine related. I completely appreciate why it’s important to do tests to rule things out as well as rule things in when investigating problems. But it’s so frustrating as a patient to repeat yourself over and over to be told that there isn’t any foundation in your theory at all medically by several people (including one of my ex endos), only to find out years later that actually there maybe is. I have no idea what the endocrine thing is, mind you, but the sleep study at least now justifies some tests which people were reluctant to do beforehand which might explain things. 

I’ve now got 3 endos, like I said, and they’re willing to explore my sleeping difficulties in depth, which I’m relieved about. The sleep study ruled some things out so brought us a step closer, even if it isn’t immediately obvious. In a way, I kind of wish it had showed sleep apnea so I could start treatment. But as I’ve not had a full night’s sleep for three years, I guess a few more months won’t make much difference! 

So I’m 30… 30 things before 30

I had my 30th birthday in May, so it’s time to see how I got on with my 30 things before 30 list. Mine was never as ‘exciting’ as other people’s travel and adventure plans, but I wrote it after I had to stop working due to illness and needed something fun to focus on. I haven’t managed to complete all of it, mostly because of illness, but I think I’ve given it a good go!

1. Ride a horse. This isn’t physically possible for me to do anymore. However, a friend came to me in a dream and said that I should ride a carousel horse instead. So the next time I see a carousel, I shall ride a horse!

2. Go on a spa day. Again, not possible for me to do anymore. But a friend came over and did my nails for me (thank you!) which was pretty close and a nice treat! 🙂

3. Make a wearable piece of clothing. I have made headbands and worn them out in public.

4. Volunteer for a charity. I’ve done a lot of this in the past year, reindeer post for Post Pals, volunteering at the endocrine conference for Addison’s UK and setting up my own charity-based venture on my Out With Animals blog.

5. Go to a Christmas Market that isn’t just the one in Birmingham. I didn’t get out of the Midlands to a Christmas market, but I went to ones in Coventry, Solihull and Blenheim Palace as well as the one in Birmingham.

6. Sell at a craft fayre. Logistically, this wasn’t possible. However, I send the animals I make to people and have had a few requests for specific animals or gifts from friends. So I’m going to say I’ve completed it.

7. Go see a musical and stay the night in London. I’ve been to two concerts in the Royal Albert Hall but we didn’t stay over (too complicated). We had a lovely time!

8. Be a tourist in London. We were kind of touristy around the Albert Hall, but that was as much of a tourist as I got! Maybe sometime in the future I’ll manage this, but I’m not well enough right now.

9. Go for a picnic in a park or forest. We’ve done this a few times, although only got as far as eating ice cream in a forest! There’s something nice about picnics in the park.

10. Go punting. A friend offered to take me, but we couldn’t find a date that suited. It would be cool though!

11. Do yoga outside. I regularly do my physio outside. It’s not much and not a full yoga class but it’s a lovely way to start the day.

12. Make brioche. I’m now on a low carb diet, which means eating brioche isn’t the best idea. A friend and I were going to make it but it requires setting aside a few days for proofing and takes more effort than chucking ingredients in a bowl and mixing them, which I struggle to manage as it is!

13. Sleep in a yurt. This nearly happened for a friend’s hen party, but I wasn’t well enough to go.

14. Learn to play Sonata Pathetique mvt II all the way through. I can do this! (Kind of!)

15. Make my own fruit juice for breakfast. Mango and peach- it was good!

16. Practise Spanish in a real situation. I’ve chatted briefly in Spanish, taken part in Instagram photo challenges and done a tiny amount of reading. Plus I’ve watched a few tv programmes with Spanish in!


17. Go/watch ice skating. This is another ‘not possible’ ones.

18. Read the Harry Potter books in order. 

19. Make mojito ice lollies. I can’t tolerate alcohol right now so another one I couldn’t do.

20. Learn how to crochet. This was something I was certain I couldn’t do. But now I love it! I mainly make animals for my Out with Animals blog or blankets.

21. Re read a book in French. Reading is hard for me at the moment. But I did read half of Twilight in French and I’m most of the way through a satire book a friend bought me for my birthday. So two halves makes a whole book right?

22. Host a raclette party. We hosted lots of them!

23. Listen to BBC proms concerts. I really enjoyed doing that last summer so plan to do the same again this year 🙂

24. Record a song on GarageBand/logic. I purposefully haven’t done this. I know how to do it, I used to teach it. I can play many pop songs on many instruments to record it in. But I think it would make me feel sad that I’m not a teacher or a musician anymore and I don’t feel like I need to prove my ability to do it that much.

25. Play Pokemon Go. I’m not good at it but I’ve played!

26. Eat Tapas. I’ve done this a few times now. And my brother now owns and cooks in a Tapas bar! 

27. Visit a castle. We visited a lot in Wales. This one is my favourite.

28. Go to the seaside/beach and paddle. We nearly did this, but the weather was tornado like so we cancelled. I’m going to Devon in the summer though so hopefully will manage a paddle then!

29. Play in a band rehearsal. I very briefly played the triangle at a band reunion event, but that’s as far as I got. I did send Elgar the Elephant to help out on my behalf though…

30. Go to a carol service. I went to one in symphony hall. It was lovely!

Like I said in my previous updates, I’ve given myself a purple rating for ones which I now can’t do. A bit like what I used to give gcse kids if they weren’t meeting their target for reasons outside of their control. So with everything considered, I think I’ve done pretty well!

The final tally stands at: 5 not completed, 1 part completed, 21 completed and 3 purple/not able to complete. 

I really enjoyed doing the challenge, and part of me wants to make another list to complete in the year coming. Obviously I won’t be 30 again, but it was a great way of thinking of some fun things I wanted to do or achieve and making sure that they actually happen. I’ll have a think about what can go on my next list!

What ‘I’m Tired’ means to me

There’s a difference between normal tired and chronically ill tired, but it’s hard to appreciate until you’ve experienced it. And even with different chronic illnesses, there’s different levels of what tired means to different people. I don’t have a point at any time of day where I don’t feel exhausted. I don’t feel better after having slept or napped. I wake up shattered and have periods where I get more shattered, but I never get any respite from being fatigued and exhausted. Which in itself is mentally exhausting! On some days, I could sleep for 23 hours out of 24 and not feel any better for it. I clearly can’t hibernate for all of my life though…

Lots of people genuinely seem to want to know what it feels like and have asked about it. So here’s some activities or feelings which are similar to the level of fatigue I feel on a normal day which other people might have experienced: 

  • Jet lag. Like across the world jet lag with a 7 hour time difference the ‘wrong way’.
  • After having had a severe stomach bug where you’re recovered and kind of eating but still feel really weak and ‘floppy’. Where standing up for a minute takes it out of you.
  • Staying 10 minutes longer than you wanted to in a sauna.
  • Going to run a marathon with no training and not being allowed to walk.
  • Having flu, the type with a high temperature so you feel out of it and hot and cold chills so that breathing feels like too much effort.
  • Not having slept for 48 hours and having to sit an exam.
  • When your brain feels frazzled because you’ve put up with constant noise for hours on end.
  • Trying to listen to a pool-side conversation while you’re underwater holding your breath. 
  • Having to carry a really heavy, giant box around all the time and not being allowed to put it down ever. 
  • Walking or wading through swamp land or thick mud 
  • Trying to go against the flow in a packed crowd. With your heavy box you can’t put down.
  • Being pulled by a current in the sea.
  • Being desperate for the toilet all day, not having eaten all day and having completed a full day at work with a banging headache and people interrupting what you’re doing every 5 seconds.
  • Rock climbing or climbing a mountain with no training in 30 degree heat.
  • The type of hangover where you can’t move even a little bit and you feel like you’re dying. 
  • Banging your head on something and the moment immediately after where the room is spinning and everything feels like it’s drained from your body. 

So because my version of ‘normal’ is most people’s idea of being unable to function, when I say ‘I’m tired’, it means ‘that’s it, I’m done, I need to sit down or sleep *right now* otherwise something bad will happen’. I don’t have ‘a little bit more’ or ‘just a bit further’ left in me, because I didn’t have that to start off with! And also, I can have my ‘normal’ level one minute and then literally plummet to zero in a matter of seconds. I think that’s the bit that’s tricky for people to empathise with, because most people do have a little bit extra energy-wise in reserve which they can access if they need to, even if it does mean digging deep. And the tired feeling doesn’t hit them as hard like a smack in the face- it’s a more gradual decline. 

You get used to functioning with what you have. It’s actually pretty easy to look and act as tired as you feel, the real skill is looking ‘alright’ even when you feel like you’re dying 😉