Insulin Resistance & Reactive Hypoglycaemia

I saw a different endo last week, which was mostly preparation for the synacthen test I had this week. However, we did talk about the hypos (low blood sugar episodes) I've been having, and I got diagnosed with something else; reactive hypoglycaemia.

A hypo isn't pleasant. When I have them, I feel shaky, sweaty, confused, have poor concentration, dizzy, and have a headache. Too low a blood sugar is dangerous, so needs to be treated so you don't become acutely ill.

The consultant actually diagnosed me with an 'abnormal phase 1 lag release' (whatever that is!). But that's a bit of a mouthful! I already have insulin resistance, which means my body needs a bit of persuading to make insulin, and then when it does it floods my system with it. But having reactive hypoglycaemia means that my blood sugar level gets pushed down by the excess insulin and I have a hypo, or something that feels like a hypo because my body doesn't know if it's coming or going.

Still following? If so, well done! It was at this stage of the explanation that I really wished I'd paid more attention in biology at school. Reactive hypoglycaemia also means that when I eat, my blood sugar goes up a tiny bit and then down a lot, rather than up a lot (ish) and down a bit like most people's do. I've been telling doctors this for about 18 months and they've all been telling me 'that's not right' or 'you're reading it wrong' but the professor in endocrinology I saw last week didn't flinch when I said it and knew exactly what was going on, so it can't be that weird!

This actually explains my 'I need to eat' feeling I get and why I need to eat seemingly constantly, even overnight. I eat something, insulin isn't used the way it's meant to, my blood sugar goes down and I feel hypo-ish so I need to eat to get my blood sugar to go up a bit and the cycle starts again. So really, when I feel hypo, it's because of what I've eaten a few hours ago because my body has a lag or delay. Which is a tad hard to predict!

Just to complicate things further, hypos are also really bad for Adrenal insufficiency, and hypo is one of the onset of crisis symptoms. It's been pretty entertaining trying to guess whether I need sugar, carbs or more hydrocortisone during these episodes!

My consultant's exact words were 'think and eat like a sheep- graze little and often'. Which made me laugh- a consultant with a sense of humour! Rather than 3 meals a day, I should be eating more like 6 or 7 smaller meals, made up of low or complex carbs (low GI). I've essentially been eating the right foods but the dieticians and my other endo told me to aim for 3 meals a day. So I did and it was hard. I'm hoping this might work better and I won't feel so much like I'm on a rollercoaster blood sugar wise.

I never have high blood sugar, my over producing insulin (albeit with a lag) takes care of that. I need to do some more reading about it and, from what my consultant said, it's not easy to work out and will be a lot of trial and error. But it feels like some progress after I've been hitting brick walls for almost 3 years with this.

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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 😉 

Harry Potter in Concert

The Royal Philharmonic Concert Orchestra is currently touring the UK performing the Harry Potter and the Philospher’s Stone film score live at the same time as the film is played. I’m a massive Harry Potter fan and particularly love the Harry Potter film music, so I loved it! 


We went to see it in the Albert Hall. There were performances closer to us, but I incorporated it into part of my 30 things list and I thought the atmosphere would be amazing. And it was. It was a great mix of people- film lovers, orchestra fans, Harry Potter geeks dressed in robes, children… it was really good fun. And audience participation was encouraged! 

I studied conducting at university, but never did any film or screen conducting. I found it interesting to watch it being performed live with the film, because it obviously has to be really precise, but usually when the film score is recorded, it’s done with cues and times. This conductor must have really internalised his score and the film to be able to get it so spot on in front of a live audience. Incredible. And the musicians were amazing too. An entire film score, especially the length of a Harry Potter one, is a lot of playing to do in one concert! 


There was also a choir with wordless parts throughout. You know their bits exist when watching the film, but because it was live their parts added more depth to the soundtrack. In fact, in general there was more depth to the music, especially in the lower brass. I guess it’s partly because I haven’t watched the first HP film on a large screen since it originally was released and the sound gets compressed a lot when it gets turned into a DVD. I also noticed a lot more of the musical devices used and our perception of some of the characters was different, which was interesting! All because the music was played live and more of a focus rather than in the background. 

I think my favourite bit was actually the credits because they played them in their entirety and people stayed in their seats and listened unlike at the cinema. The orchestra played all of the themes we’d listened to for the last few hours and it just rounded it off nicely. And also got a really loud round of applause. 

It was a great day out. We managed to get street parking right outside the Albert Hall (£14 ish for 4 hours), and the congestion charge doesn’t apply on weekends. Because I’m not up to walking far, we decided to have lunch in the Italian restaurant at the Albert Hall, which was a bit of a gamble because we hadn’t reserved and it could have been ridiculously expensive, but it turned out to be really reasonably priced and a nice meal. Plus we didn’t have to rush because we were already at the venue. I’ve only been to the Albert Hall once before so I loved being in such a historic venue. The same orchestra are performing the Chamber of Secrets next year so I’m tempted to see that too! 

Banner photo: taken from the Albert Hall box office 

Identity

If you had to describe your identity in one word, what would you use? I did a bit of an experiment and most people used a noun rather than an adjective. E.g. I’m a mother or I’m a teacher. Which got me thinking, what’s my identity?

I’m not a mother, I’m not a typical wife. I’m not a student. I’m not part of a particular religion enough that I can say that’s my identity. I’m not a teacher or musician anymore and I can’t say I’m a sportsperson. I suppose I could call myself a knitter. There’s lots of things I’m not, but what am I? It reminds me of the game ‘Guess Who?’ where I’m flipping down the people, working out what I’m not, so hopefully it’ll reveal who I am. Hopefully not some bald, old guy with glasses! 😉

Identity is important, it’s what you associate yourself to be. It gives you purpose and makes you feel like you belong. Most people choose their identity to an extent, but my identities and my future ones have currently been taken away from me. People change and identities evolve but most people can shape them into an identity that suits them, or they move from one identity to another e.g. from being a student to a profession. It’s different having something forced on you, like through illness or something like redundancy, or indeed if you feel like you can’t ‘get out’ of a perceived negative identity e.g. Drug dealer.

I refuse to have my identity as a ‘person with a chronic illness’, which is where a lot of other people seem to want to ‘put’ me identity-wise. Mostly because I don’t like to be told I’m ‘inspirational’ because I got out of bed that day (which has happened). That’s not inspirational, by all means call me inspirational, but for something that’s actually inspiring! Not just because I exist with a chronic illness- my charming and cheery disposition while being admitted to a&e, for example (it’s a line from Mary Poppins, before anyone thinks I’m being big headed 😉 ). There’s lots of memes that say ‘don’t let your illness define you’ and equally there’s a lot of people who say that they’re proud to have their chronic illness define them because it’s a big part of their life. I have a chronic illness, but that’s not my identity. I want to be known for other things as well as it. I see it the same as saying ‘I’m female’ or ‘I’m nearly 30’- it’s a fact, the nature of it impacts on my life in the same way other factual things do, but it’s not a characteristic of me, even if it takes up a lot of my time.

I think that’s the point lots of people miss when it comes to identity, me included- characteristics or traits. Our identity is culturally something that we can constantly identify with. So someone is always considered a mother, or a teacher even if they’re not physically in that role at the time. Which is weird that we want to demonstrate our identity with a noun, when we could choose an adjective instead. People might not be consistently the same adjective, but then they weren’t when they were labelling themselves as ‘a something’ either. This works better for people like me, who can’t ‘be something’ in the same way as everyone else.

So what am I? I like to think of myself as kind, empathetic, resilient, creative, friendly and enthusiastic. I might not be all of those things all of the time, I’m most definitely moody, stubborn and grumpy a lot too! But my identity isn’t then linked to my career or ‘purpose’ in life, it’s driven by the type of person I want to be. It allows me to think that I can choose what characteristics I can be. I’m not supposed to act in a certain way because ‘other teachers do’ (or whatever). I can change or add in new ‘identities’ as and when things change. You can identify yourself as a doctor or a performer, but it’s the qualities of the individual which make up the profession, not the other way around. I can’t identify with a profession, but I can choose what characteristics I want to nurture in me and make my identity that way. I can (and do) choose a positive identity, rather than a twisted, evil, or bitter one.

A noun seems quite fixed in terms of identity. An adjective seems a bit more free and unpredictable. Life isn’t predictable so I don’t see why something as important as identity should be seen as something so permanent or why people should feel the need to conform to one. There’s a great bit in the Jungle Book that I love, where Mowgli is fighting the tiger and Bagheera says to him ‘why are you trying to fight him like a wolf? You’re not a wolf, you’re a man, fight him like a man’. Mowgli had tried to fit in as a wolf all of his life, but it was human skills which saved them, despite the fact he’d tried really hard to develop his identity as a wolf. I might become ‘a something’ again at some point in the future, but for now I’m going to cultivate skills and attributes I want to have as part of my identity rather than trying to find the closest noun/profession/person which vaguely fits.

Looking After Mental Health

Maintaining mental health is a lot like looking after your physical health. In the same way that you can’t go to the gym once and come out looking like a Greek God/Goddess in terms of physique, you can’t do one lot of meditation and suddenly be cured of depression or anxiety. It seems quite obvious when you compare it to physicality, but the problem with mental health is that you don’t always realise it’s becoming a bigger problem until you’re stuck in a cycle. At least with physical health, you can see changes or you can measure it somehow.

Lots of people decide that they want to lose weight for their wedding or a special event and complete a burst of gym training or crash dieting to get there. Sometimes it works and they get the results they want for their event, sometimes it doesn’t and they get halfway and other times they can’t maintain it at all. A lot of the time, people who crash diet or focus purely on the event in mind don’t maintain their physical health afterwards. It’s great to have a goal or a target to work towards, but it’s healthier to incorporate it into your daily life than to do it in fits and bursts when there’s an event on the horizon. Why? Because if you work so hard to get the weight off or to be able to run a marathon, when you try to start up again after a break it feels doubly as hard. And you’re thinking ‘I could do this a year ago, why can’t I now?’. Rather than improving on what you had before, you have to start again and it’s demoralising, which means you’re more likely to give up than you were the first time around.

Mental health is the same. If you only practise self care or meditation or compassionate thoughts when you’re mentally struggling, it doesn’t work very well. It needs to be embedded into your routine so that you’re not fighting with your low mood and trying to adopt a new way of thinking at the same time, because it’s overwhelming. And you’ll probably end up thinking ‘this is stupid, it’s not working, I don’t feel better, so I’m not doing it anymore’. However, the problem with mental health is that it’s difficult to do a lot of the practices like CBT or reframing when you’re feeling ‘alright’, because you don’t feel the need to do them. You also feel a bit like you’re wasting your time dedicating it to some ‘stupid’ therapy which you don’t need at that second.

For me, I knew that I needed to set things up for when I was having bad days because of the amount of time I spent working with pupils who had mental health problems. Hence my star jar and happy photos in my phone. My problem was that when I got really stuck in a cycle is that I would forget that I had these things set up and not do them. Or I found CBT made me more anxious partly because my brain fog meant I couldn’t remember the process and I beat myself up about it, but also because I don’t necessarily have the physiological chemical response to it that makes you feel better for having done it- rationally I could tell you if I was looking for catastrophes that didn’t exist or fortune telling or projecting negative emotions, but I wouldn’t feel any better. Plus I’d promptly forget everything I’d rationalised out.

Someone who read this post recommended an app called Pacifica which has been really useful. It suggests activities to do depending on your mood, it takes you through it step by step, you can go back and look at things you’ve already gone over and it reminds you to check-in with yourself. This is exactly what I needed because my problem was never not being able to see my cycles, it was not having a clue how to get out of them and feeling overwhelmed by all the inner noise. I’ve not been using it long, but it means that hopefully I won’t be expecting myself to lose 10 stone of mental weight in a matter of minutes because I’ll have already established some kind of routine.

Phrases I Dislike About Chronic Illness

I’ve been spending a lot of time on social media at the moment, mostly because I’ve been having a lot of PJ days and forced rest. It’s quite easy to get sucked into clicking on hashtags and different Twitter users and some of the random things I’ve been coming across have been other people with chronic illnesses or chronic illness blogs. Some I find interesting to read, others I find a bit annoying. The same phrases seem to come up a lot, and they’re not ones I tend to use. I’m not saying other people shouldn’t use them, I’m explaining why I don’t like them.

‘This has ruined my life’

The most recent blog I read was called ‘Depression has ruined my life’. To me this sounds really drastic and final. It also suggests that whatever came before in your life isn’t noteworthy, even if it was, and sounds like you’re writing yourself off forever more and won’t achieve or do anything else. Our lives are what we make of them, and life is never uneventful for anyone (NB, I’m not saying ‘that’s life’ because that’s an equally annoying phrase!). Illness might not be fair and it can be bloody hard, but that doesn’t mean life suddenly has no meaning after diagnosis and is ruined. My point is, while we have an element of choice, even if our choices aren’t as broad as we want them to be, we can do something about whatever it is that might ‘ruin’ our lives. Life might not be what we planned, but we’ll get more out of it taking an alternative path than sitting down and declaring ‘this has ruined my life’. Depression might change someone’s life and can be really unfair (this is just an example by the way, not a passive aggressive dig), but, if you think about it, we’re not born into a rainbow and unicorn filled perfect world with a pre-destined path lined up for us. There are, of course, exceptions- some illnesses have drastic and final consequences.

IMG_9967

I saw this photo on Facebook and it makes a lot of sense. If you compare your life to the perfect one you planned out, it’s never going to live up to your expectations.

Someone said to me once ‘I hope my child doesn’t have asthma because I don’t want it to ruin their life like it has yours’. Excuse me? She made it sound like a death sentence if her child was asthmatic. At that point, I was really healthy and could run 10k. Even when my asthma was uncontrolled, I wouldn’t have said it ruined my life. I asked her what she meant and she said because I required daily medication and needed to manage it it had ruined my life and was holding me back. I obviously disagreed- holding me back from what? Daily medication isn’t that big a deal. I wonder what that same person would say now I’ve got Adrenal Insufficiency!

‘I suffer with….’ or ‘ X suffers with…’

True suffering is rare in this country. Famine, war, poverty, abuse, terminal illness are all things some people suffer, but the majority of us won’t. However, suffering is relative to what you’ve experienced previously. So someone who has only had colds in the past will feel like the flu is the worst suffering ever. But the thing with suffering, is it’s partly the way we perceive it that tells us how much we suffer from something- the thing itself might not be ‘that bad’. If you’ve got a bad back and you spend all your time going round and round in your head about how much it hurts and saying how it’s ruined your life, you’re going to suffer a lot. If you acknowledge you have pain but don’t put yourself under so much mental stress, you will suffer less. The level of pain will be the same, but the amount of energy and suffering you place on it will be less. Why do you have to say ‘I suffer from asthma’ when you could just as easily say ‘I have asthma’? I have daily, unpleasant and debilitating symptoms but I wouldn’t say I’m constantly suffering. You get used to what you have to an extent and some days are worse than others.

For example, I really hate vomiting (most people do), but it can be really dangerous for someone with AI. When I felt sick, which happens a lot, I used to get myself in a massive panic about it, which made it worse and then made me dread the next time it happened even more. I worked out that if I got rid of the commentary in my head, I still felt sick, but I didn’t suffer as much or for as long.

‘Severe’

Some people with chronic illness have severe or serious versions of their illness. But some people with chronic illness add the word severe themselves, as in, it’s not a term given to them by their doctor. Again, this might be because of the ‘illness is relative’ point I made above- if everyone else around you has mild, seasonal asthma and you have a few asthma attacks a year, you asthma is more severe than theirs’. But it doesn’t mean you have ‘severe asthma’. However, I reckon the only reason people do this in the first place is because they’re trying to make the point that their condition is worse than someone else’s e.g because they desperately want someone to take them seriously rather than dismissing them or because everyone seems to have a habit of trying to ‘outdo’ each other and the person is trying to make the distinction between their condition and ‘normal’ conditions- and I can completely understand why it happens. For example, if I say I’m tired, someone nearly always says ‘oh yeah, me too.’ They might be tired, but their tiredness isn’t comparable to mine. If I were trying to make that point I might say ‘I have severe tiredness/fatigue’ to try and make the distinction. The problem is, this then means that people who do have severe versions of illness are put in the same category as people with less severe versions of the illness and have to find another way to make the distinction! Without realising it or intending to, it’s become some sort of competition. If someone tells me they’re tired too, I try to inwardly roll my eyes and let it drop rather than getting into some sort of debate.

‘Warrior’

I personally don’t like the word. Lots of people use it to refer to someone who has a chronic illness as a way of encouragement, and that’s up to them. I don’t like it because I think it causes a lot of pressure for one thing, but also because it brings out the competitive nature in people. If you’re having a bad day and you’re not soldering on, does that mean you’re not a warrior and you’ve failed? It shouldn’t, because everyone has bad days. But if you see other people being named ‘warrior’, it’s a hard label to live up to. How do you even get called a warrior anyway? What do you have to do? Is it the person who has the worst symptoms (or suffers the most) or the person who achieves the most despite illness? And then the competitiveness starts. Or is everyone who has a chronic illness a warrior? If so, why? I’m all for encouragement, but the word makes me uneasy. I think it’s because it implies that you’ve always got to be fighting your illness or disease. Sometimes it’s ok to not be ok.

‘Spoonie’ 

This word is huge in the chronic illness world. A woman developed the Spoon Theory to help explain how she manages chronic illness to a friend. She happened to have a lot of plastic spoons in front of her in the diner when she explained it, so it became known as the Spoon Theory, and people with chronic illnesses are known as Spoonies. It’s a good analogy, but it doesn’t work for every illness. It’s great to have a sense of community and to have other people to turn to, which is why it took off. Reluctantly, I occasionally use the hashtag on twitter, because it means I can find people who have similar illnesses to me. The reason I don’t like it is I haven’t worked out yet if it’s a word universally used or if it’s only used by people with chronic illness. If it’s used by disabled and non-disabled people to refer to those with chronic illness, then that’s fine. If it’s a word only used by disabled people and non-disabled people aren’t allowed to use it, that’s not fine. It’s a bit like when groups use  derogatory terms to refer to each other, but call other people from other groups racist/homophobic when they use the same word. It can’t be used in solidarity in one breath and considered an insult in another, is my view.

I probably spend more time than the average person thinking about words and phrases because I studied languages at university. I’m not saying any of these terms are wrong, I’ve just come across them a lot in my random trawling and thought I’d explain why I try to avoid them on my blog!

 

Being Called ‘a Burden on the NHS’

I was scrolling through Twitter yesterday and came across a thread where people were ‘discussing’ the NHS and whether certain taxes should be increased to help with the current crisis. I say discussing in inverted commas because I was horrified by the attitude of some people. There were the typical ignorant, racist trolls who were commenting on the fact that ‘foreigners use it for free’ and being derogatory, but there were some comments about how only people who contribute to it should be allowed to use it for free, because it’s ‘all the people on benefits who don’t contribute and get to use it for free costing the rest of us money and being a burden’ (paraphrase) and ‘the people on the dole who just spend their money on fags and booze who waste the NHS’- again a paraphrase, but an opinion that came up a lot.

Wow. I thought about getting involved, but decided against it because I wouldn’t be able to argue my point eloquently in the limited number of characters, it would stress me out and I doubted I’d actually be able to change people’s opinions on social media. But wow.

I currently don’t pay into the NHS. But I use it a lot, and I use it more than the average person in the UK. Does that mean I shouldn’t be allowed to use it for free? I used to work and I used to pay a reasonable amount of taxes, but I can no longer work because my poor health prevents me from being able to. I had a rant at my husband about this point and he said ‘that’s different though’. How is it different? If you want to apply this principle to the NHS, unless you go through every single person’s individual circumstances to decide it’s different, wasting more time and money, how would you possibly be able to decide who should have free healthcare because they’ve contributed enough to the NHS and who shouldn’t?

You can’t. Unless we become like other countries and have insurance. That’s the great thing about the NHS, it treats anyone and everyone regardless of circumstance, ability to pay or illness. We’re lucky to never be in a situation (at least for now) where we have to decide if we can afford potentially life-saving treatment because we have the NHS.

I can still hear some people saying ‘but there are people who don’t pay into it who abuse it’. Yes, but there are also a lot of people who do pay into it, have the attitude that they’ve ‘paid their taxes so are entitled’ and rock up to A&E with a cold demanding to be seen. And where do you draw the line? If it’s about people contributing to it and being responsible for their health, what’s the criteria? What about babies or children? Children aren’t directly paying into the NHS but they’re still allowed free healthcare even though their parents don’t pay double taxes to cover them. Or pregnant women who require treatment for their baby before their baby’s born- their baby doesn’t exist yet as a person outside of their womb technically. Who should be paying for that? I doubt anyone would challenge a child or pregnant woman’s right to free healthcare because it’s obvious that they should be allowed to access it for free. Or people who smoke lots and then get lung cancer- should they get free treatment even though they knew that smoking was bad for them? How about all the drunk people before Christmas who end up in A&E because they couldn’t work out their own alcohol limits?

If we were all statistics or algorithms, then you could discriminate between who deserves what in a ‘fair’ way. But it wouldn’t be fair, because we’re humans. And what’s fair based on statistics is not necessarily fair in terms of what the right thing to do is. Humans get sick and make silly mistakes like getting drunk to the point of needing hospital. They shouldn’t be penalised because they’re human and act like humans. That’s why the NHS is free for people to access. Healthcare Professionals are supposed to treat and help people, not be given ultimate power of God and decide who lives and dies based on financial reasons. And what’s the point in a healthcare system where the only people who could use it for free are potentially the healthiest people because they’re working and making contributions to it? From a business point of view, without the sick people using it, the system would go bust. The people who need it the most are children, the chronically ill and the elderly, all of whom aren’t necessarily paying taxes.

The NHS is free for us to use as patients but it obviously costs money. I can understand where people are coming from when they say it needs to be respected and used appropriately so as not to waste money, but that goes for everyone- just because you pay into it doesn’t mean you have the right to misuse it. And it really upset me to be called a ‘burden’ when I do everything possible to be a good patient and keep healthy. Having lived in a country where you have to pay for your healthcare, I know what it’s like to be thinking ‘can I afford this ambulance since ambulances aren’t covered in my health plan’. It’s not fun, so I’m obviously really grateful for the NHS!

Under Vs Over Replacement

‘Under replacement in the short term is more dangerous than over replacement in the short term.’ This is the phrase that a very nice lady from an American charity for adrenal insufficiency keeps using on some forums that I follow. There’s been a lot of deaths the past couple of months due to under replacement during illness where people have got caught out, died in their sleep or, worse, gone to hospital and people haven’t taken them seriously and they’ve consequently died.

Usually I’m pretty practical about it and think I’m quite good at knowing what I’m doing, but, no matter how good I am at getting a feel for what I need to do, it’s still just a feeling- it’s literally guesswork. And, to be truthful, there were a couple of times last year where I did get it wrong and it’s partially fluke that I didn’t become one of those ‘got caught out’ death statistics. I’d be lying if I said that those experiences hadn’t scared me a bit.

So here’s my current thing. I think I have a cold. I say think because I don’t really have any cold symptoms yet except my throat feels a bit scratchy, my sinuses sore and my chest feels a bit heavy and I feel ‘weird’. Most people can say ‘I think I might be coming down with something’, I go one step further and my body gives me a bit of a warning that I think I think I might be coming down with something. So do I need to stress dose?

Pass. I have a gut feeling I do, but it’s just a feeling. My gut feeling is also telling me I don’t need a full stress dose at the moment. However, I’ve just been debating with my GP for the past 6 months about how she thinks my baseline is too high and I’m on too many steroids (my endo has backed me though). So my confidence is a bit skewed because she’s been drilling into me the negatives of being on high doses of steroids. But, respectfully, she also regularly tells me that I’m a special case and out of her expertise, which makes her stress dosing advice slightly unreliable. (I should point out I like my GP and she was looking after my best interests). So I go back to my mantra of ‘under replacement is worse than over replacement.’

It’s a pretty ridiculous situation to be in and wouldn’t happen for other illnesses. You wouldn’t say to a diabetic anymore ‘you’re not allowed your glucose metre, you have to guess what to do with your insulin and hope you get it right.’ Or if someone said to a doctor they thought they were having a heart attack, the doctor wouldn’t turn around and say ‘I’m not sure. I don’t want to overmedicate you. What do you think you should do?’ But I’ve got to work out a hormone level that keeps me alive, based on my symptoms and gut feelings and with very little input from medical professionals. Except hindsight is a wonderful thing and doctors are quite happy to tell me off for not stress dosing when I get it wrong. We all feel a lot of pressure as patients to get it right, which definitely does not help the phantom cortisol levels we’re trying to manage (stress makes it worse). I’m lucky I’ve got a friend to help me work it out.

So under replacement is worse than over replacement. Thankfully, my BP went up a lot yesterday to ‘the last time it was this high I called an ambulance’ stage. I have to say I was relieved. That, along with feeling way more dizzy than usual, meant I had a clear reason to double my last dose I’d taken at lunchtime. Now what do I do with my 5.30pm dose? Pass. I still felt weird and dizzy. It’s also hard to work out because because I had an extra dose only 3 hours ago and a lot of that would still be in my system. I hate maths. It’s like having a plant. If you water the plant every day at the same times and then notice it looks a bit dry so add some more water every now and then. The plant doesn’t drown but also doesn’t seem to thrive any more than it did before. You could say ‘it needed that extra water because it would have shrivelled up and died otherwise’ or ‘I’m not sure if it needed that extra water but it didn’t drown so maybe it did’. My BP could be good because I had the extra dose and it’s working, or it could be good because it was always going to be good anyway. Do I still need a double dose?

I got steroid guilt so I just had my normal dose. Plus having more HC in your system doesn’t actually make it last any longer, it just means you have more, and I’d already covered 5.30 anyway by having the later extra dose from lunch. So I decided to leave it a bit and add in an extra dose before bed if need be- I might not be awake at night but if I’m sick my body is still using cortisol up so it would need to be replaced. Everything still looked ok before bed. But I was still more dizzy, I had pins and needles in my feet and arms which I’ve only ever had when my baseline was too low and I felt really, really lethargic. I figured that if I genuinely hadn’t needed my double dose earlier, I would be more lively than I currently was, so I took another 5mg and went to bed. If I didn’t need it, I wouldn’t be able to sleep because of excess cortisol zipping around my system, if I did need it, I would be able to go to sleep. I crashed out within 10 minutes so clearly I needed it!

Some more maths and another game of ‘what shall I do with my steroids today?’. Here are some things you also have to take into account when working out your dosing:
– the doses have to start off higher in the morning and get lower as the day goes on. Mine didn’t yesterday because I only added the doubles after lunch. Which is ok as a one off but can cause problems if you do it a lot.
– some people can, but I definitely can’t just revert to my baseline after increasing my dose by 15mg the day before.
– i don’t think I need a full double dose remotely but I do think I need an increased dose.

Taking those three points into account, I’ve decided today that unless I have a clear, obvious reason to double everything like I feel really ill suddenly, a high BP or temp, I’m going to take 20/10/10 (total: 40mg) instead of my usual 15/10/5 (total: 30mg). Yesterday I had 15/10/10/5/5 (total: 45mg), which is perfectly fine as it’s just a different way of dosing called circadian dosing. I decided 20/10/10 because:
– the doses start off higher and get lower, so that works
– the total is a slight taper on yesterday by 5mg so that if I don’t need it anymore, I’m not over medicating. But I can always add in another 5mg again at lunch if things look a bit weird then and it still works.
– it’s not a full double dose so I’m not over medicating.

Most people when they have colds have to make the decision between blackcurrant lemsip or lemon. Or have to remember when they last took paracetamol. And their cold doesn’t have the potential to kill them. This is what I have to do when I get sick, as well as the actual being sick part. People who go to the doctors because they don’t know how to manage their cold need to be shot. And, I sound like I’ve got a plan, but it could all change quite quickly. If my temperature goes above 37.5, that’s time to double dose. If I vomit, that’s a double dose and potential injection. My asthma could make an appearance and I have to deal with that too. Or none of those happen and I need to work out a new plan for tomorrow so I can start getting back to my baseline.

Basically I’m playing it by ear and guessing. And I feel more terrible than usual because I have a cold, which makes it harder to work out. I’m writing this blog because it’s helped me feel calmer about the choices I’ve made, it eases some of the pressure I feel and the more people who understand, the easier it is for me if I’m out with you, need to change my dose and start quoting numbers ;). I hate the steroid guilt that comes with making decisions, even if I can justify them. Under replacement is worse than over replacement…

Making a Happiness Jar

I stole the idea off another Twitter user, although I’m calling mine a ‘Star Jar’ because I like the rhyme. The idea is that you write down things that happen that made you happy and look back on them at a later date and remember the good and funny things. Some people do it as a New Year ritual, I’m going to look at mine whenever I’m feeling a bit fed up. It’s also good for me because I have a tendency to forget positive and fun things, and I also liked the idea of making my own since I mostly spend my days doing crafty things when I can.

To make it, I used:

  • an old Nutella Jar, washed out and label taken off. This just happens to be the thing that we (ok, I) eat the most of in our house, but any jar will do.
  • Tacky glue
  • Sequins- I used gold and silver
  • Paper
  • Brush
  • Tweezers
  • Scissors
  • Kitchen roll (I’m not the tidiest!)

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I printed out a template of a star on the paper, mostly because I can’t draw. I then stuck it to another piece of paper and cut around the two, so it was a double layer so it could carry the weight of the sequins. I decided to do this rather than using card because the jar has a curve on it, so it needed to be flexible still for when I stuck it to the jar at the end.

Starting with the point, I alternated rows of sequins with the different colours, working my way down. Each row partially overlapped the one above it and the sequin before it so there were no gaps. Make sure you work in the same direction though (I did left to right). This is where the tweezers came in handy- dipping the sequin into the glue and then positioning on the star. It sounds fiddly, but it’s not- I don’t have a steady hand and coordination isn’t my strong point, so if I can do it most people should be able to!

I left it to dry overnight and then stuck the star to the jar the next day. I used the brush to make sure the glue was evenly spread out over the star and some kitchen towel to wipe away any which squidged out the edges. The glue dries clear, but I didn’t want any thick bits showing.

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I thought about writing something on the other side, but my handwriting is shocking, so I decided to keep it simple! So I used some spare sequins and just dotted them around the sides of the jar. I did the side with the star one day and then the other side the next, so that the glue had time to dry in between.

The finished jar looked like this:

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Now time to fill it with lots of happy things!

Validation 

This is not a pity post. So not my style. But it is an explaining post. Self confidence and validation are fragile things. Everyone needs to feel good about themselves, either because they can see things for themselves or because someone else gives them a boost, it’s human nature. Without realising, there’s lots of things which give us worth or value every day. It could be simple things like ‘I like your top’ to ‘well done on that project’. It doesn’t have to be direct praise, it could be a thank you, a sense of accomplishment from finishing your to do list, or something your child comes out with which is cute and makes you think ‘this is all worth it’. We like to have purpose as human beings.
Equally there’s lots of things that we or other people do to take us down every day which flattens or confidence, but let’s not get into that here! 
If you’re sick, your validation, self worth and self confidence goes down. It has to, you’re spending a lot of time by yourself so you automatically lose any validation you were getting from other people. I don’t always get dressed and if I do I don’t get dressed up (what’s the point?) so I don’t have a ‘good feeling’ from wearing nice clothes. I tend to wear the same clothes out all the time because I can’t really justify spending money on nice clothes when I don’t have a job. I don’t have a job so I don’t feel satisfaction for doing something well and I clearly can’t get thanked for doing a good job. I don’t do much which can be classed as an achievement – unless showering counts – so there’s no feeling of pride. 
So already it’s quite easy to feel worthless. Then if you have an illness where your mood is altered as well, which I do, it’s even more tricky. As well as feeling like you’re worthless and have no value, your brain tells you that regularly as well, and, even better, it probably also has all these wonderful examples of how useless you were in various situations! 
All that going on would make it very easy to not get out of bed and get dressed every day. What’s the point? Why bother if you’re not worth anything, don’t do anything, and have no purpose? 
This is where you have to start thinking about life differently if you have a chronic illness. Everyone else looks for validation in things that they achieve. Look at social media for examples of that, it’s littered with selfies of people doing ‘amazing’ things and they get validation from the likes they get. But if you’re sick, you can’t physically chase the ‘next thing’ and things move a lot more slowly and focus less on material things. So when I’m having a ‘you’re not worth anything’ day, I try to remind myself that:

-my body didn’t die overnight. It kept breathing, and my heart kept beating, and it did a lot of stuff that meant that I woke up again in the morning. That’s pretty damn clever. 

– my achievements might be less than others but the effort and commitment required to do them is still the same. So small things, like showering, still deserve to be celebrated.

– I’ve provided a lot of med students (and more experienced doctors) with the opportunity to practise and learn about my endocrine illness. So I might not have actively achieved anything that day but there might be a doctor somewhere thinking ‘I’ve seen this before, I know what needs to be done’ and be able to help another patient out because I’ve ‘taught’ them about adrenal insufficiency in the past. I find this particularly helpful to think about after a hospital admission when I’m about as useful as a sack of potatoes, but at least someone learnt something because of me that week! 
Ok so those 3 things aren’t really achievements, they’re more acknowledgements of the fact that I still exist. But it’s still validation and everyone needs that as a human being, even those who spend most of the day in their pyjamas watching day time tv! And, if you do know someone with a chronic illness, finding a way of giving them some kind of validation (but not in a patronising way) will likely give them a boost they need, even if it’s a simple ‘this cup of tea you made me is great’ 🙂 .