Illness Burnout

Everyone knows you can get burnout from working too hard, being exhausted from looking after the kids, exercising too hard… but did you know you can get burnout from having a chronic illness?

It’s not so much the ones you have to manage by taking meds a few times a day, that’s not really that big a deal and takes maybe 2-3 minutes per day, with a bit more input if you get flu or something. It’s more the illnesses which need constant maintenance and monitoring and which impact massively on your life.

It’s bloody knackering. It’s like having a pet or a child but never getting the good bits. And unlike a pet or a child, you can’t have ‘me time’ or leave them with the grandparents for the weekend. There’s always a big part of you which wants to say ‘f*** it, I’m not dealing with this today’, but you don’t get that choice if the end outcome is death.

Here are some of the things that make me feel burnt out with my adrenal insufficiency sometimes:

1. By far the one that annoys me the most day to day is following a medical low carb diet. It’s supposed to make me feel better, help me lose weight and lower my cholesterol. But it doesn’t. So what’s the point in doing it. Why can’t I eat what I want?! The diet itself isn’t the hard bit, it’s the guilt that comes with it, that I must be ‘doing it wrong’ since it’s not working.

2. Keeping records and diaries. If there’s a medical app for it, I probably have it. The only way I can prove to my doctors that I am actually doing what they tell me or that I’m not fabricating my weird quirks is by documenting everything. So everything I eat and drink is recorded along with physio, blood pressure, blood sugar, temperature, how often I need to go to the toilet, sleep, changes to my meds… everything I do is recorded because no one knows what’s relevant and what’s not until they see it. It’s time consuming and annoying and depressing all at the same time. And it makes you obsessive.

3. Doing a lot of maths. Grams per carb per serving, timing blood sugar readings, working out my steroid doses daily, making sure I have enough meds so I don’t run out, organising said meds.

4. Constant monitoring or reflecting to make sure the maths stays right. You can work out your steroid taper plan at the start of the week but have something happen which scuppers it and have to do it alllll again. And stabbing your finger multiple times a day to check your sugar level is never fun.

5. Going to appointments. I see my chiropractor staff more than I see my mum. Hours waiting in hospital waiting rooms, travelling to appointments, mostly to be told ‘nope we still don’t get it, do this test then come back’.

6. Having to chase people. The NHS computer officially hates me. Something to do with when I changed my name after getting married (3 years ago) means that it tells people I’ve been referred for an appointment but it never actually completes the referral. But everyone thinks it has. And then it refuses to let itself be overridden! Aside from that, I spend a lot of time talking to people and being the point of liaison between departments.

7. Having to argue with people. This is a particularly horrible one. I spend a lot of time arguing with people to get my correct treatment. I’m not wanting anything extra to the protocol, the problem is some people are unwilling to acknowledge they don’t know the protocol so refuse outright. There have been a few times where I’ve thought ‘why the hell am I arguing for a prescription which keeps me alive when no one here seems to care if I live or die? Maybe I should just give in’. That’s a particularly dark place to be in and takes a lot of coming back from.

8. Monotony. It’s so boring living with the same routine. But it’s hard being spontaneous when you have naps, meals and tablet schedules.

9. Restrictions. I’m not allowed to drive, I can’t walk far at all, I can’t really go out by myself because of those reasons and I can’t stay by myself for long periods of time. As well as the physical things I can’t do but I can’t be bothered writing. I’m proud of myself when I make myself a cup of tea!

10. Fear of missing out. Everyone has this to an extent, but when you physically can’t do things or have to live so rigidly you spend a lot of time thinking about things which might have been were you not sick.

11. Always having to be prepared. Might seem like fun when you’re in the scouts, but being prepared for any medical emergency is a giant pain. It’s not wallet, phone, keys when I leave the house, it’s emergency injection, phone, pill bag and testing kit. And many snacks.

12. Having to field unwanted advice. People are trying to help. It’s with good intentions. But it’s never nice feeling like someone thinks you’re not ‘trying hard enough’ if they catch you on a burnout day.

13. Having to constantly think about it. I don’t actually want to think about it all the time, but there’s a lot of ‘if I do that will X happen’ or ‘is it nearly tablet time’ thoughts. Pretty much every few minutes because that’s how often my symptoms all shift around.

I haven’t actually come up with a solution for feeling burnt out about illness, except you have no choice and have to get on with it and hope that things will get a bit easier at some point. Self care is important, but sometimes you’re too worn out even for that! People bring new parents food and useful presents- maybe there’s a chronic illness version of those?! 😉

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Keep Calm & Carry on makes invisible illness hard

British people are known for their stiff upper lip, keep calm and carry on and ‘man up’ mentality. If we all pretend something isn’t happening, it’s not really happening. We must maintain our lives the same as they’ve always been, at all costs.

This attitude is the foundation of a lot of problems surrounding invisible illnesses. When you get diagnosed with one, you kind of go through a few stages:

  • It won’t change my life. I’ll carry on as normal
  • This is actually bloody hard, maintaining the illusion of normalcy
  • Ok. I need to make some changes to the way I live. But I’m not asking anyone for help
  • People keep criticising the way I do things. I think they think I’m lying
  • I do actually need help with this. But I’ll only ask people close to me because I feel bad
  • It’s frustrating having to justify myself all the time; The criticising people step up the critique the more you ask for help.
  • I’m not going to justify myself anymore. Criticise me all you like. I need to do this to cope.

Part of it is the disabled person wants to keep things as normal as possible at first, so they try to keep it an invisible illness. But that’s why I think the keep calm and carry on attitude is so damaging- it pushes you into a state of denial from the word go and makes you feel like you have to get on with it. But it also makes it difficult for everyone else to empathise with you because they never really see what an invisible illness looks like for them to consider it normal because we’ve been conditioned to hide it.

It boils down to people still thinking that illness is a weakness. From the second we leave the womb, our bodies start to fail us. We get bugs, have injuries and we start a process that ultimately ends up in death. Whether it be 2 hours from birth or 200 years. So why is illness a weakness when everyone ends up the same anyway?

I’m really bad for admitting when I need help, letting people see the bad side of it and expressing when I feel ill. But I mostly feel like that because when I’ve tried to ask for help or say what I feel like in the past, even for non illness related things, people have told me to get on with it and toughen up.

So we can bang on about people not being judgemental about invisible illnesses or accusing us of being liars or exaggerating our illness because they’re invisible, but really it’s a wider problem. It’s ok to show weakness and ask for help. If you’re not listened to or not believed, the problem isn’t with you, it lies with whoever conditioned that person to believe that the only way to live was to keep calm and be in complete denial as to what’s going on in life.

No one has the perfect life. What does it look like anyway? If someone tells me to keep calm/calm down when I’m having one of my hormonal endocrine meltdowns, I tend to reply with ‘this is positively calm- if I wasn’t, you’d have been punched in the face by now!’ 😉 illness happens to everyone. Instead of tearing each other down and looking for holes in the person’s story about their illness, we should be supportive.

***Although, disclaimer, I also really hate it when people do over exaggerate their illness or milk it for all it’s worth because it makes it so much harder for the rest of us when we get tarred with the same brush!***

Having to prove what others can’t see

Picture this: if you can point out to an art curator that you can find Wally (or Waldo if you’re American) in this picture, you’ll get paid £50 a week for the rest of your life.

I can do that. I know these books inside out, I’ve grown up with them. I’d consider myself an expert. He’s there. *points to Wally*

Museum Curator: I don’t see him.

*tries to point again.*

MC: nope, I don’t see it. You must be wrong.

He’s right there by a striped wind breaker.

MC: well there are lots of wind breakers without Wally, you must be lying

No. He’s not that far from the sea, near a windbreaker, with a man standing on one leg directly behind him in the sea and 2 donkeys on the beach.

MC: I haven’t got time to listen to you tell me something which I doubt is there. Fill in this questionnaire with the info on and I’ll look at it when I do have time.

It’s just the same questions you already asked me. I’d just be repeating myself.

MC: Yes, but you’re probably just saying what I want to hear anyway because you heard I was giving away prize money for people who could prove it.

But why say you’ll give me money if I can tell you where Wally is when I can see him, but then move the goal posts?

MC: if you continue to make points like that, I won’t give you the prize money.

*fills in questionnaire*

MC: yeah, you’ve provided a lot of info, but I still can’t see Wally. I tell you what, if you manage to find a few people who agree with you, then I’ll consider giving you the prize

*stands in museum collecting people’s opinions for the day*

MC: you’ve found a few people who can also see Wally, but we’ll have to check out if they’re credible or reliable. We can’t just take your word for it.

MC: on second thoughts, I’ve done my own research and decided that those people you found who back you up are wrong too.

how can they be wrong? If we all see the same thing and agree, how can you say Wally’s not there just because you can’t see him? Maybe you’re the problem, not us?

MC: I’m a museum curator. I’m in charge, therefore I’m right. I tell you what, come into the museum with a presentation and we’ll reassess the questionnaire you filled in.

*shows a presentation*

MC: last time, you said ‘striped windbreaker’. This time you said ‘blue and white windbreaker’. Why have you changed your answer?

I didn’t change it, it’s both blue and white and striped.

MC: well that’s not the same thing at all

It is as far as I’m concerned. Just different words.

MC: well I find that highly improbable. You must be lying. And you’ve added extra details in, like you’ve said one of the two donkeys is eating a child’s ice cream. Why are you making extra things up?

I’m not making things up. I’m trying to give you extra details so you can see Wally. It’s glaringly obvious to me, but you can’t see it. So I’m trying to give you as much information as possible to help you.

MC: Nope. That’s not relevant to me. Wally isn’t there, that’s a fact. You’re making this extra stuff up to try to con me.

I’m really not. I had people agree with me and back me up remember?

MC: ok. Fine. I tell you what, I’ll get a panel together- I’ll ask the museum owner to come down and pass judgement too, and there’s one of our volunteers who knows a lot about Where’s Wally books. He can sit in too.

*has same discussion as before with the owner and the volunteer*

Owner: I don’t know enough about this so I’m going to defer to the expert, the museum curator.

But he’s wrong, I’ve got 10 people who agree with me.

Owner: yes but I trust his opinion because he says he’s an expert.

But I grew up with these books. I’m an expert too.

Owner: yes but you’re not a museum curator, are you?

Volunteer: maybe you’re not using the right words to explain it to the curator. If you had, I’m sure he’d understand.

But I filled in a form, did a presentation and talked to him. I don’t know how else I can explain it.

Volunteer: well if he still can’t see Wally, it must be your fault.

MC: see, Willy isn’t there. I told you.

It’s not Willy it’s Wally.

MC: same difference.

No it’s not. Shouldn’t attention to detail be super important in your line of work?

MC: it doesn’t matter anyway. He’s not there. I can’t see him. That’s all you need to know. So you’re not getting the £50 a week. Now, if you manage to find some other way to prove that he exists then, by all means, come back. But for now, go away.

*******

Just because you can’t see it or understand the information given which would help you find it, doesn’t mean it’s not there. People with chronic illnesses shouldn’t be judged or told they’re lying about their symptoms just because they’re either invisible or the person is working hard underneath to hide how they really feel from other people.

Photo taken from a Where’s Wally book

Tricky Talking Points with Chronic Illness

I am definitely not someone who expects people to censor what they say when talking to me for fear that they might offend me or upset me or stress me out. Some people with chronic illness impose bans on what people can talk to them about e.g. their work life because they can’t work. That’s not my style. I want to hear about these things! That being said, there are a few topics of conversation that, if you’re going to talk about them to someone who’s chronically ill, a little bit of sensitivity wouldn’t go amiss. It doesn’t mean don’t talk about them, it means just think about the following points before launching into a debate/monologue/rant:

  1. Moaning about being ill/tired

I don’t mind people moaning about being ill. Having a cold or stomach bug sucks. Being really tired is hard work. However, when it becomes a whinge, that’s when I get irritated. I once had to listen to two nurses talk about how tired they were from their shifts that week AND they’d been out at the weekend, so they were doubly tired. The other nurse proclaimed that her weekend had been ‘ruined’ because she’d had a cold and she was so upset about it. It wasn’t just a passing comment. It was the full time it took them to do the meds round. My thoughts went along the lines of ‘hello?! You’ve got patients who are in hospital feeling shocking and you’re saying your weekend was ruined because of a cold? And you’re tired because you have a social life? My social life right now is currently talking to Barbara in the next bed over, and she’s senile so we keep having the same conversation!’ 

It happens in ‘normal’ life too. Moan about being ill or tired for a few minutes, not got a problem with that. But don’t make it longer than that.

2. Finances

If someone doesn’t work because they’re ill, finances are obviously going to be tight. There are also a bunch of expenses we have to pay for that healthy people don’t have to worry about. The only people who are vaguely similar are people who are on maternity leave and on statutory pay. I’ve read many a blog from mothers saying about how people expect them to be socialites while on maternity leave, and how people should be more sensitive to their finances. However, having a child today, whichever way you look at it, is still a lifestyle choice. You are choosing to have a child or to take time off work. For some reason, the same principles don’t seem to apply to me being off work because of illness. I have not chosen to be too ill to work. We are not all given benefits by the government (I’d settle for £1 a week right now). Please don’t go on about how unfair it is that you can’t afford to go away for the weekend when you’ve just got back from a holiday abroad. Or how you’re a bit short on money this month because you’ve just put down a deposit on a car. Financial things are stressful for anyone but particularly so when you don’t have any money coming in but are expected to pay the bills just like everyone else is. I saw one of those ‘grow your own money tree’ things in the shop the other day, and thought about giving it a go. Except it cost £2.50, and £2.50 is an hour’s worth of hospital car parking…

3. Moaning about your job

Soon after I gave up teaching, someone said to me ‘well you don’t want to be a teacher anyway, I never have any time to myself’ and launched into a rant about how terrible their life was. It might have been said with good intentions to make me realise I wasn’t missing anything, but I wanted to punch the person- I wanted to and still want to work. I liked my job, even the really crappy bits. And the crappy bits weren’t half as crappy as having to live the way I am now.  It’s the same as moaning about being ill or tired- moan about it a bit, but I’m not going to feel sorry for you unless you’re experiencing some kind of work place harassment or something. Or you have to work with creepy crawlies or spiders. I definitely don’t want that job! 😉

4. Diet/weight issues

It’s seen as the normal thing to do, get worried about your weight and say how you’re on a diet. However, if you’re already skinny and able to exercise, it’s guaranteed to get my back up. I agree, I don’t understand why people who are overweight, who don’t have medical problems and can physically exercise don’t try harder to lose weight either. But that’s not me. You can have a ‘cheat’ day on your diet. I can’t because it makes me feel ill. My medical diet is boring, and annoying and involves maths before I eat and a lot of forward planning. I can’t go and run a marathon to burn off that bottle of wine (which I can’t drink in the first place). Never mind couch to 5k training, I’m just about managing couch to bathroom on some days.

5. Not following your doctors’ advice

I get really irate when people moan about being ill, then go to the doctors because they ‘haven’t got time to be ill so need to get rid of this cold’ and then promptly don’t do what the doctor tells them to do. It’s really irritating- not only have you used a doctor’s appointment you don’t need, and then ignored any advice you were given because you know what’s best, but you’re also taking up my time with it. I don’t care if the instructions on your antibiotics are annoying because you have to take them on an empty stomach and that’s ‘impossible to fit into your life’. I can give you my schedule of 45+ doses (not an exaggeration) a day, along with my scheduled meal and snack times where you have to weigh and carb count everything, and see how you manage for a day.

Everyone gets carried away in a whinge or a rant, and I get that. Life is also relative- someone who hasn’t experienced more than a cold or stomach bug is going to find it hard to empathise with me when I feel like I’ve got the flu permanently, I appreciate that.  But think about it a different way. Would it be considered insensitive to:

  • moan about your parents to someone whose parents have just died?
  • say how much you hate your children to someone who has just had a miscarriage?
  • complain about a slightly dodgy knee to someone who has just had a car accident and is in traction and can’t get out of bed for 6 weeks?

Those might be glaringly obvious examples (I hope!), but the same theories apply to the 5 points I’ve made about chronic illness. I’d like to reiterate that I don’t expect people not to talk about these things to me, because they’re obviously part of people’s lives. I’m just asking people to think about the language or vocal tone they use when doing so, showing some sensitivity to the person with chronic illness 🙂

Waiting to do tests

Waiting to do tests or procedures is annoying enough when you’ve got a fixed date or are on a waiting list. Waiting to do tests when your body has to be cooperating is even more annoying.

I have to do something called a day curve test, which is where blood is taken at fixed times of day to see what my cortisol level is doing while I’m taking my hydrocortisone. This will help determine my baseline dosage, although it’s only a snapshot of what’s happening at a specific time on that day, so it’s only one of the factors which help decide this (i.e. Sitting around in a hospital all day uses less cortisol than having to to walk around). I also need to repeat my ACTH test because the last one wasn’t sent to the lab in time, which has to be done without any hydrocortisone in my system. So I can’t do both tests on the same day. Both have to be done at a hospital in a different county to me, so I’ll need someone to be able to take me (causing logistical problems) and I’ll need a babysitter before and after the ACTH one because I won’t have taken my HC. More logistics. Thankfully, I don’t have to book the tests, I can turn up to the department on the day and they’ll sort me out, so one less thing to worry about!

So besides all the planing involved, I have to be on my baseline to do the tests. Which I’m currently not. It’s a cumulation of things, mostly starting with a hospital trip in July, followed by my Grandma dying, a bit of some kind of illness- all of which required stress dosing- and then my body having a particularly rough time tapering from the stress dose.

Why is it so hard tapering this time? Because I was on a stress dose for a long time is the easy answer. The longer the higher dose, the harder it is to come back down. Secondly, I haven’t had a death since I got diagnosed so I was making it up and massively underestimated how much you need to stress dose for subconscious emotional stress, which put too much pressure on my system. Thirdly, I know I need to do these tests. Nothing is going to happen until I do. So I’m stressed about getting to my baseline which ironically means it’s taking me longer to taper because I need the extra HC to counteract the stress. Stupid, right? I tried to bully myself into getting to my baseline by doing a rapid taper and it ended up with me having an internal debate as to whether I should be injecting and calling an ambulance and trying not to pass out. Not the best idea I’ve had.

Consciously, I try to put it to one side and not get wound up about it because it won’t help (easier said than done). But I can’t help what my subconscious does when I’m asleep, and that’s what seems to be causing me a lot of problems right now- nightmares about tests/hospitals/Adrenal crises…

So yes. Waiting for tests is annoying. And I could really do with some stress free, illness free and just general injury/drama/surprise free weeks so that I can get them done safely! Fingers crossed!

Comparisons

Everyone makes comparisons between their life and everyone else’s. It’s pretty natural, and things like social media don’t help, because everyone only puts up the ‘best bits’ of their lives or the things they want sympathy for.

Common things people compare themselves success-wise against other people tend to be:

  • promotions at work, or a feeling of where they ‘should’ be
  • the quality of your car
  • whether you have children or not. And how well behaved/academic/pretty/advanced these children are
  • how many bedrooms your house has/size of the garden/location
  • getting married/relationships
  • the holidays you go on and the ‘amazing’ time you have away. All documented via various check-ins and selfies on social media, of course
  • sporting achievements/fitness goals/weight loss goals
  • what you eat and how ‘clean’ an eater you are
  • fashion/looks. If I see another ‘just got out of bed/just woke up’ (but actually ridiculously posed) selfie, I may actually throw my phone against a wall. Or post my ‘out of bed look’ (aka looking like a yeti) to scare a few people off my friends’ list!

…..

There’s a lot to compare yourself against. Even if it is all a big insta-show rather than a true reflection of what’s happening. If you’re not in the right mindset, it can make you feel really depressed seeing everyone lead their amazing lives and feel like you’re trailing behind or not making the most of it.

The problem when you also have a chronic illness, is that you have a few more comparisons to try to avoid. You have all of the ones mentioned above, but also the knowledge that you can’t do anything about it even if you tried. Like, if someone really was desperate for a promotion at work, they could work harder, find another job, put themselves up for new projects… there would be something, somewhere that they could do that would at least be a step in the right direction towards that happening. But that choice has been taken away from you if you’re chronically ill. Finances might be tight which rule out house, car and fashion upgrades. Most illnesses come with physical changes, so anything based on aesthetics is also out. It’s a really hard thing to accept, and I don’t think you fully get over the fact that you’ve had that choice taken away from you.

Then add in the comparisons you make about other people with your illness. These include:

  • s/he can do X, so why can’t I?
  • How come they don’t seem to be in as much pain as I feel?
  • I must be doing something wrong if they’ve managed to get to that stage of the treatment plan
  • I had to go to hospital again. Why do I always seem to need hospital? Am I doing it wrong? Could I be doing better?
  • Others seem to be coping with it better than me.

On top of that, people tend to weigh in and make comparisons for you, about people they know with chronic illness. They’re often along the same kind of lines to what you were already thinking, which doesn’t help because it vocalises your worst fears.

It’s so, so easy to get caught up in the negative cycle of wishing yourself back to what your life used to be like. We’ve all been there- it’s a human thing to do. Of feeling jealous or even angry of other people’s plans or people doing things you can’t. In feeling like if you tried just a *little* bit harder, maybe you could do all those things and be ‘back to normal’ (even though you know it’s untrue). Some people with chronic illnesses even go so far as to get annoyed at other people for talking about the things that make them happy and try to silence them. Which I actually find really irritating. Here’s why:

You can’t begrudge people being happy. Someone will always have it better than you, likewise some will always have it worse. Yeah it sucks to be ill, but it sucks more when people are worried to tell you anything for fear of upsetting you. It’s ok to be upset about some things, or have down moments. But you become a very bitter and twisted person if you let every single little thing eat away at your soul, and you’re not living any life at all if you’re constantly wanting for things that you can’t have. And, bigger picture- life isn’t about all of the big, amazing things which happen, it’s the thing going on every day. If you’re not doing something to make yourself happy every day, then you’re doing it wrong. Even if you do have a chronic illness. This is something I learnt pretty early on into my forced house arrest after I left work. But it’s so important to stop the festering thoughts and comparisons creeping in, making it more miserable than it has to be.

I had a pretty stressful (and expensive) day trying to get to and go to a hospital appointment. Plus I’ve been in a lot of pain. But here are some things that made me happy today:

  • texting/messaging my friend random crap. It won’t make sense to anyone but us and was partly photos and emojis, but it made me smile
  • crocheting
  • getting good post
  • writing a blog post
  • I had a really nice lunch!
  • I watched a TV programme I like
  • I managed to have a bath (huge achievement), which helped with my pain a bit

They’re only little things and mostly not Facebook worthy. Did I get a promotion today or book a really cool holiday? No. But neither did most other people. The problem with social media is you see someone doing something every single day. So yeah, someone will have been successful in their job and someone else will have been on holiday. That doesn’t make you a failure though. It just means it might be 6 weeks until that person can post about the next ‘big’ thing they do (not including the 555 days til Ibiza posts. They don’t count. That’s the same thing over and over!).

Look at it another way (and I really am joking here), us with chronic illnesses get to go to hospital a lot and can, if we want to (I personally don’t), check-in with a ‘feeling poorly at hospital’ post. Lots of people seem to like doing that because of the attention they get. Well, we win! We get to do that a lot! 😉

But it *is* ok to be fed up or cross or down about being sick. Don’t let other people tell you otherwise and feel like you have to jolly through it. But it’s not good for your own well being if it becomes your normal, every day mood. And sometimes reframing things helps. Here’s what I like to (try to) remind yourself:

  • I’ve watched a lot of period dramas recently. Their medical care looks horrendous! Thank god for modern medicine and things like anaesthetic and pain relief!
  • Likewise, thank god for Netflix and quick internet
  • can you imagine being home sick all day without messaging and social media to talk to people on?
  • Internet shopping is a god send. As is the dominos pizza app.
  • You can learn or read about practically anything on the internet. Lots of random learning opportunities available.
  • I actually get medical care. Some people in some countries don’t
  • Treatment for my illness is outdated and a bit rubbish, but there’s at least a treatment. Some people don’t have one for their illness

So yes, being ill sucks. But sometimes it’s not so much the illness that’s the hardest to deal with and more the voices in your head telling you what you ‘should’ be doing and feeling.

6667

A friend sent me this postcard once. Good advice!

Red Flag

Every year in this week of September I have to renew my Red Flag with the ambulance service. I don’t actually remember it, my phone just reminded me to do it- very useful that I must have set up an annual alert when I first did it!

A Red Flag is important for patients with Adrenal Insufficiency for a few reasons:

  • When you ring 999, it puts you automatically on a red 2 call out if you’re conscious and a red 1 call out if you’re unconscious. These are the fastest call outs for an ambulance and means the ambulance gets dispatched from the second the flag is picked up by the call handler.
  • Not every ambulance service has hydrocortisone or solu-cortef on board. It depends on the trust. Likewise, not every ambulance crew is able to administer it, again depending on the trust. The red flag means you’re sent an ambulance with the capacity to be able to treat you e.g. Paramedic crew rather than technician
  • It gives the crew attending to you some information about you and your condition before they arrive. This is extra to the stuff that dispatch usually give to them. That means they can come up with a treatment plan en route or look things up if they’re unaware of the condition. It also apparently beeps at them constantly every 30 seconds until they get to you to make sure they’ve read it!
  • You’re more likely to be taken to the nearest trauma or major hospital (if available or appropriate) rather than a local one even if it’s closer. This is a good thing if you need to be in ressus or with a specialist team. The crew decide though- obviously their priority is to get you to hospital quickly for your benefit and so they can get back on the road and help other people.

It’s pretty easy to set up a Red Flag. In my trust, I email them every year and give them:

  • My name, address and DOB
  • The name of my condition and the steroid I take for it (hydrocortisone)
  • My GP name and address
  • The address(es) I want to be flagged. You should only have a couple- so I have my home address and I used to have my work address on there.
  • An emergency contact/next of kin

Then someone will email me back from the ambulance service to confirm it and it’s done! I had to ring up to find out the address in the first place, but I just googled my ambulance trust and rang the number there.

There have been a couple of times where the red flag hasn’t worked, but most of the time it works really well. To make doubly sure, I usually ask the dispatch if they’ve found my flag when I’m ringing for an ambulance.

I’ve been doing my research…

I did what every patient isn’t supposed to do and I consulted Dr Google. Which I think is fine if you have something like a headache which suddenly becomes a brain tumour from just a few clicks, but as a rare disease patient, I probably would have died by now had I not gone on Google and tried to piece things together. For example, here is where my research paid off where some of my doctors were wrong and I had to work hard to persuade them:

  • My blood pressure can go up not down in adrenal crisis
  • I put on more weight when my steroid dose is too low rather than when it’s too high
  • If my steroid dose isn’t adequate, I can’t sleep, not because it’s too high
  • Sometimes I need extra HC at night
  • My body compensates for a lack of cortisol by giving me adrenaline rushes. Which cause huge problems.
  • My body gives me an asthma attack as one of the pre-cursors to adrenal crisis. Treat the AI first and the asthma attack stops…

There are a few more examples but you get the idea. Something I’ve been banging on for ages about is my ‘I need to eat’ feeling and everyone’s been a bit stumped.

Basically, I feel terrible eg sweating, shaking, feeling sick, fatigued, dizzy, out of it, headache, stomach ache, but my blood sugar is ‘fine’. But if I eat, I feel better. So then I got told to check my blood sugar and keep a diary, which is when I noticed that my blood sugar starts to go up when I feel ill and then goes back down again as soon as I eat.

Which is not supposed to happen and I got told that by every doctor I told it to. What’s supposed to happen is you eat, your blood sugar rises, insulin kicks in and brings it back down to normal about 90 minutes after. They said I wasn’t recording it right, that I didn’t measure it properly, basically anything to do with me getting it wrong.

I did a few experiments. The more I ate, the faster it came down. Sometimes it wouldn’t go up at all after eating which is very odd. Then last month my new endo diagnosed me with reactive hypoglycaemia. Which means my body over produces insulin when I eat certain things and it makes my blood sugar drop fast. Aha! Progress! I knew I was right…

That didn’t explain the whole ‘why does my blood sugar go up when I don’t feel well’ thing. It’s never dangerously high, we’re talking about anything over 6.2 and I start to feel horrible, which is normal range, so medically, no one really cared about it until recently. But I feel terrible, and I feel awful most of the time anyway, so getting rid of the 10+ episodes of whatever it is every week would be nice.

So I went on google, and painstakingly did some research. I haven’t actually run this past my endo yet so I could be completely wrong, but since I started thinking about it this way, it’s got a tad easier to predict. Which is definitely a win!

Also bear in mind that I found the colouring in diagrams aspect of biology much more interesting than the actual science behind it when I was at school. Obviously regretting that decision now, even if I did have pretty notes.

  1. When your fight or flight system kicks in, your body releases a bunch of hormones so you can run away from the bear chasing you. I don’t make cortisol and my insulin production is messed up but I do still make other adrenal hormones like adrenaline.
  2. These hormones make your liver (I think?) dump a whole load of glucose in your blood from stores which makes your blood sugar rise. To the average human, this would only happen in a stressful situation, but because I’m currently not stable, standing up waiting for the kettle to boil is a ‘stressful’ situation for me on some days. So my blood sugar rises but not for any obvious reason.
  3. Once you’ve got yourself out of danger, your body releases insulin to bring your blood sugar down to a normal level. Except I don’t make cortisol, which is one of the hormones which encourages this to happen. And I’m also insulin resistant and reactive hypoglycaemic and everything is totally confused by now in my body. So I think my insulin doesn’t get triggered or is triggered too late.
  4. Which means my body has a kind of ‘going into shock’ moment and I feel terrible. But if I eat something, it goes ‘foooooood, we know what to do now, we need to make some insulin!’ And that’s when my blood sugar starts to come down. And the reactive hypoglycaemia bit means it comes down fairly sharpish.

I’ve also noticed that when I’m eating a lot and it’s not making me feel better, if I take more hydrocortisone, I’m suddenly not hungry anymore and I don’t feel as terrible. So clearly there is a link there too. Plus a lot of these episodes are at night when I don’t take HC and my cortisol is at its lowest.

I reckon, if my science is accurate, I could be onto something here. Problem is, I’m told to avoid eating carbs and taking updoses of HC where possible. So someone needs to decide what they’d like me to do when I have these episodes because I’ve been told off for both in the past. At the moment I’m making it up and doing what I need to avoid hospital, but that’s clearly not a long term solution!

If anyone has any thoughts, different science or experience I’d be interested to hear too! 🙂

‘You managed X so why can’t you manage Y?’

This is a phrase which will drive any person with chronic illness crazy: ‘well you managed to do X so why can’t you do Y?’ or even ‘well you managed it yesterday, why not today?’. It’s annoying for a few reasons, but mostly because it shows you that the person saying it not only doesn’t understand your illness but they’re also questioning the way you cope with it. It feels like they’re saying ‘get a grip’ or testing you.

From people in the wider world I find it annoying but usually choose not to argue because their ignorance isn’t worth my time or energy. However, I was horrified when a doctor last week said ‘well you managed to walk in here without your wheelchair, why can’t you manage the rest of the time?’

I looked at her and blinked and asked her to repeat it. She was foreign, I was trying to give her the benefit of the doubt – maybe she’d phrased it badly. Nope, she rephrased it and it had the same undertone. So I had a minor strop and emphasised the life threatening elements of my condition and how I didn’t use the wheelchair all the time because I wanted to walk still and keep my independence as much as I could, but if I was having a bad day, I’d use the wheelchair. Surely she should be encouraging this mentality, not questioning it?!

It’s upsetting being under that much scrutiny or feeling like you have to justify yourself. Different circumstances, places, weather, terrains, activities and even just a different day sometimes means having to do things slightly differently to be able to manage. Which should be down to us to decide, not someone else. So here are some phrases in different contexts to highlight how stupid a phrase it is when used in relation to chronic illness:

  • You managed to eat your chips without cutlery, why do want some to eat soup?
  • You drove yesterday without filling up with fuel, why do you need to go to the petrol station now?
  • It wasn’t raining this morning, why do you want an umbrella now?
  • You walked into town fine and didn’t get tired, why do you want a lift back?
  • That chicken’s use by date was yesterday, but it’s still fine to eat today
  • Why don’t you like carrots? My friend Sam also has blonde hair and she likes carrots.
  • I watched a programme about mending cars once so I don’t see why I shouldn’t be able to fix yours.

Stupid things to say right? Apply them to chronic illness:

  • You managed to walk earlier, why do you want your wheelchair now?
  • You did stuff yesterday, why do you need to sleep a lot today?
  • You weren’t feeling nauseas this morning, why do you feel it now?
  • You walked into town fine and didn’t get tired, why do you want a lift back?
  • That meal’s only got a bit of sugar in it, it should be fine for you to eat
  • Why can’t you manage cooking? My friend Sam also has your illness and she can manage cooking.
  • I watched a programme on your illness once so know how to cure it.

The thing that really winds me up is the comments are usually preceded by ‘well…’. It just adds to the accusatory tone. If you wouldn’t question someone’s request for an umbrella, don’t make them justify a mobility aid. If you wouldn’t risk feeding a guest off chicken, don’t force feed them food they’re allergic to or which might make them ill e.g. Diabetics. Knowing someone with the same illness or having read about it doesn’t make you an expert.

There’s a fine line between helpful comments and unhelpful ones, and a lot of it is because we live our illness and people’s reactions to it every day. Just because you might be saying something for the first time doesn’t mean it’s the first time we’ve heard it. In a lot of cases, a simple thought before speaking helps. Except for the doctor I gave a second chance to and she blew it! 😉

Mental Health & Chronic Illness

I broke up with my psychiatrist last week. Or rather, we decided her sessions weren’t benefiting either of us so we stopped them. However, I don’t feel like I got the help I need or anything remotely useful as to how to cope or manage my mental health in relation to having a chronic illness. I’ve got a long-term, debilitating, life-threatening, life-limiting condition, which is tricky to manage and has meant that I’ve lost an awful lot of my life, but I haven’t had an iota of support in coming to terms with it or learning how to cope with it from the NHS in terms of my mental health. But I’m definitely not the only one who has a chronic illness where mental health directly impacts on physical health (and vice versa) so why is there such a gaping hole in support in this area?

In my case, I was sent to the psychiatrist for 2 reasons:

1. I’m depressed because of what’s going on health wise (situational), and because I take steroids. Regardless of why I’m depressed, I’m still depressed and need help, especially because depression causes low cortisol and low cortisol causes depression, and you get stuck in a loop.

2. My hormones and chemicals don’t function properly. There are 2 bits to the human stress response: the conscious one where you can control how involved you get emotionally with something (like in point 1), and the unconscious bit which you can’t help because your body responds automatically to it. Neither works for me, which makes me ill when it gets triggered. My endo wanted the psychiatrist to assess and treat both responses, but prescribe medication to help with the unconscious part so that it affects my physical health less.

Except I didn’t get support for either. I do things to help myself every day, but only because I did some research and asked friends what helped them. I pay for private counselling because the NHS won’t provide me with a trained mental health therapist (the ones I’ve seen in the past are untrained and follow a tick box questionnaire) and they definitely won’t allocate one who understands endocrine disorders, whereas the one I found does.

The psychiatrist said to expect good days and bad days with my mental health (agreed) and that until my physical health improves, my depression won’t improve. But my physical health won’t necessarily improve, to which she said I just had to get on with it, basically. In other words, I’m not really her problem because my physical health is what’s driving my symptoms, despite the fact that those mental symptoms are negatively impacting on my physical health. How do I fix that?

She said I should be doing CBT, which I am. However, CBT only helps if your thoughts or interpretations of something are creating problems because you’re mistaking emotions for facts, or catastrophisising or trying to second guess people, for example. Except, as I pointed out, I’m not having an irrational emotional response which I’m mistaking for fact if I get upset because doctors tell me to my face that they think I’m lying (and then get proved wrong and apologise, but the damage is already done). Or I’m not catastrophisising if when I go to hospital I have to argue with people because their lack of action due to inexperience of AI has the potential to kill me and almost has done a couple of times. And I’m not second guessing doctors if everything I worry about or predict might happen actually does happen. Or the fact that I have to contemplate death and know that I wouldn’t survive things other people my age would on a regular basis. Yeah, sometimes I do blow things out of proportion and CBT does help, but what about the stuff directly linked to my illness like I’ve just mentioned? What do I do about the pretty regular, traumatic or negative encounters I have which make me depressed? And I can’t control my involuntary response to those things either, so I’m fighting on two fronts.

But I’m clearly not the only person who will have these experiences or problems. And, even if I didn’t have a rare disorder and had something more ‘common’ but still debilitating, mental health support doesn’t seem to exist to help you come to terms with your illness. In balance, I actually deal with my illness and its restrictions quite well- I’m not a bitter, angry person because of it, but only because I’ve worked hard on my mental health myself. Not everyone will be in a position to be able to do that and we shouldn’t have to be really.

Someone should be trying to help us because it’s bad enough being sick never mind feeling like you’re isolated and exhausted from it to deal with the mental side. Irritatingly, as soon as I said my Grandma had died, she suddenly sprung to life and offered me bereavement counselling, which I don’t feel I need because those emotions were far easier to process.

I think there’s a massive problem here which needs addressing. But then mental health treatment in general on the NHS is patchy and inconsistent I’ve heard from other people. I’m definitely not going to get any help by not seeing my psychiatrist again, but actually, my mental health improved slightly after I made that decision because I could stop being anxious about the appointments and the fact that she clearly doesn’t understand AI at all and kept coming out with unhelpful comments. For now I guess I’ll keep plodding along then!