I’m doing a thyroid trial

Not a drugs trial, a trial to see what happens to my thyroid. It could be a huge success or make things worse, we don’t know yet!

The endocrine system is made up of glands which tell other bits of the body to produce hormones and chemicals eg your liver or your pancreas. These chemicals then make sure your body is working effectively, so your food gets digested or your kidneys retain water and get rid of waste. These bits of the body send back signals to the glands letting them know how they got on. For example, if your blood sugar was a bit low because you hadn’t eaten enough, a signal would go back to the adrenal gland (among other things) saying that you needed some extra adrenaline and cortisol so you didn’t pass out. Your stomach would get a message telling you you were hungry which would mean you’d eat to correct the problem. It’s all very clever really.

Which means that when bits of the loops get broken, the message doesn’t get through. It’s sat in the outbox, but it doesn’t get sent or it gets sent late, which means bits of the body don’t receive the info or it gets delayed and then the body gets all out of sync with itself. Sometimes it gets routed through a random ‘server’ or different gland and you end up with a half garbled, corrupt message.

In my case, I can make adrenaline but not cortisol, so part of my adrenal glands work, which is usually the way with adrenal insufficiency. My pituitary makes some hormones but not others, and it definitely doesn’t make ACTH which is one of the boss hormones of the body- it tells the adrenal glands and the thyroid what to do. My thyroid does work, but past tests show that it sometimes does the exact opposite of what it’s meant to (although no one has worked out why) and in general its function is low.

The problem with hormones is that you can’t just top them up like you can with other things in the body. If your calcium or iron levels are low, you can top them up with medication quite often on a temporary basis, and the stocks will be replenished enough for your body to function better/back to normal. Sometimes you have to take supplements all the time, but that’s still ok. The ranges for these things are between X and Y and as long as it’s somewhere in the middle, it should be fine.

With hormones, they’re supposed to fluctuate depending on the signals they receive. If you eat a giant pizza, your body will produce more insulin to compensate than if you had a salad. But if you don’t make the insulin, you have to replace it, which is why diabetics check their blood sugars so they know what insulin to give themselves to help keep their body in balance. This is still a relatively new thing though, and there’s absolutely no way to check what your other hormones are doing.

I take cortisol replacement for my body not making cortisol, but it’s complete guesswork- it doesn’t reflect the ever changing hormones in my body at all, so the bits of my endocrine system which do work get mightily grumpy at something foreign interfering and fight back. One of which seems to be my thyroid, in that it’s having a strop and only doing the absolute minimum work it has to.

Why don’t I just take replacements for it like I do cortisol? Because it still works. And while it still works, any replacements I take are going to make it have an even bigger diva strop along the lines of ‘fine then, you clearly don’t need me anymore’ and it’d stomp off and hibernate or become dormant. And then I’d need the replacements all the time.

So at the moment, it’s like being between a rock and a hard place. It would be easier to replace everything with medications because then I’d know exactly what was going in and bits of my body might work better. But, like with all medicine, if you put artificial chemicals in, you’re living on borrowed time. The body wasn’t designed to be on a fixed, medicated regime for hormones and there’s only much you can do before the inbox gets full and it starts sending ‘message failed to send’ emails back.

Anyway, my thyroid trial. My thyroid might just be being bit stroppy but with a bit of massaging of its ego, it could be persuaded to do its thing a bit better. I say could because we don’t know until I try it. What it’ll mean, is taking low dose levothyroxine for a month to see if it improves the function. Then I have to repeat my blood tests to check the difference immediately at the end, and then again a bit later on. It could be it’s so worn out from trying to be the mediator between the pituitary and my adrenal glands and various other bits of my body, that it just needs a bit of a boost. It could be that it needs a bit of a break functioning by itself and needs temporary artificial input. Or it could be that it makes no difference whatsoever and my body completely rejects the new chemical. We don’t know. But it’s worth trying, because if taking replacements takes the slack off it a bit and gives it a chance to recover, it might make all the messages get through a bit easier and at the right time, which could help other bits function better.

It could also be a complete disaster. And hormones mess with everything. I start it in the last week of June. So if I’m a demon for a month or a bit all over the place, this is why! Fingers crossed though!


Easy Friendships

It’s very easy for me to get stressed out by interactions with other people. For lots of reasons: I feel like I’m talking a foreign language half the time so I struggle to keep up; I worry I’ve said something to offend someone or said something I shouldn’t have, even if there’s no evidence to suggest it; I overanalyse what people say to a ridiculous degree but I can usually only remember half the conversation so my mind fills in gaps with negatives rather than what actually happened… not to mention if there’s background noise, some kind of activity involved, it’s hot… lots of external variables mean I can find social things pretty stressful, even if the people are super nice. Sometimes, if I’m having a really bad day, I don’t text or message anyone because if I don’t talk to people I know I can’t misconstrue anything and get paranoid. The problem is usually the way I perceive it rather than anything anyone else has done. And I tend to avoid people who are a bit tricky or prickly anyway.

Why do I do it? Some of it is to do with my mental health and some of it is physiological. And the two kind of aggravate each other in a loop. At social things, I tend to try to put on a show that everything’s fine or I get excited to talk to people. Which releases a lot of adrenaline fast and means I then crash quite spectacularly later, usually about 11pm when my cortisol is getting low anyway and the overanalysing, overthinking and getting paranoid starts.

Today I saw my endo, which, although not social, has a similar trigger. So now I can’t sleep because I’m ‘coming down’ and going over the conversation.

Some people might just say ‘well don’t think about it then’ but it doesn’t work like that. I can do all the rationalising and CBT I want but that’s where the physiological bit comes in- if you were walking down a street and someone jumped out at you from behind a building and you thought you were going to get mugged, you’d have a surge of adrenaline and a stress response. If that person then turned out to be your friend playing a joke, rationally and mentally you would know that everything is fine, but your body would take a while to come down from that. That’s what happens when I ‘come down’ after social things. It’s weird, I know!

So this week I have been grateful and reminded of several ‘easy friendships’. These are people that I feel happy to have conversations with and don’t spend hours fretting about them afterwards. I might get over excited seeing these friends, like I did with some visiting at the weekend, but the come down was less than if I’d been anxious about it as well. I don’t feel like I need to justify what I do to manage my illness or what I’m eating to them, like I sometimes do with other people. I don’t mind asking for help or explaining what I can and can’t do to them. I’m happy to spend time with them even if my husband isn’t around, because I regularly check with him and say ‘do I need to worry that I said…’.

It doesn’t mean that I dislike other social interactions with people, I have lots of very nice friends who are really supportive and I’m slowly expanding my ‘easy friendships’ group the more I build my confidence back up. But it’s complicated and takes time. So thank you to my friends whether it’s been in real life or by text/message who have reminded me that some friendships are ‘easy’ and I can feel like my old self more afterwards again.

Stupid things people have said to me about disability

I don’t have any issues talking about my illnesses, how they work, the impact they have on me and about being disabled. I would much rather have people ask questions and talk to me about it rather than feel like it’s a taboo or something we shouldn’t talk about. Sometimes, though, people say things which inadvertently (I hope anyway) becomes insulting when they probably meant it in a different way. But it’s irritating and upsetting when you hear it. Here are five of the stupid things people have said to me about disability:

1) You’re too too young to be ill/disabled/have all these problems. Surprisingly, this comes most from nurses and medics rather than people outside of healthcare. But it’s so bloody annoying. I don’t like being sick or having a disability but I make the best of it I can. Someone saying that makes me feel firstly like I’ve done something to make my problems worse so am partly ‘to blame’ but also what do they expect me to do about it? To look at my body and ask my illnesses to come back when I’m older? Disability and illness doesn’t discriminate with ages. 5 year olds get cancer and 50 year olds don’t. I already feel like an old woman trapped in a 30 year old’s mind, why make me feel worse about it? And what’s the point in saying the comment anyway?

2) Why bother wearing make-up/ wearing nice clothes/making an effort with your appearance if you’re disabled? Why not? Why does anyone do any of those things? To make themselves feel good. So why shouldn’t I? Yes I might sweat off my make up or the clothes might have to be practical as well as nice and it might take me three times as long to get dressed but do people seriously think that all chronically ill people only wear pyjamas all the time and have to look dishevelled and ill? What does a disabled person look like in their minds?

3) You’re so lucky you were already married before you got disabled. With the implication being ‘you wouldn’t be able to find a husband if you were already disabled’. This gets said an awful lot. It’s so rude. It implies you don’t have any qualities anyone else would like, that a disability makes you unloveable, that you’re unattractive and not worth anything. It also makes you feel like you should be grateful that you have a spouse because you’re a burden and they’re ‘looking after you selflessly’ which is also plain insulting. It’s usually said with the idea that they’re complimenting my husband and how helpful he can be, but it’s actually just insulting to both of us.

4) Disabled people can’t go to university. The amount of times I’ve been told recently that I clearly don’t have any problems with cognition because I went to university is horrifying. Why can’t disabled people with difficulties concentrating go to university? Being disabled doesn’t make us unintelligent. Why shouldn’t someone who is disabled study something because they’re interested in it? Plenty of people go to university and don’t get amazing degrees but they go because they want to study something further or, in some cases, to waste 3 years getting drunk. But that’s their choice. Why cant disabled people do that too? Aside from that, I actually went to uni and got my degree before I developed my chronic illness. So that’s a completely irrelevant comment. It’s like saying to a double amputee ‘you clearly didn’t fight in Afghanistan because you don’t have legs’. People who have disabilities aren’t necessarily born with them, and we do have lives which came before!

5) I really hope I never get what you’ve got. I don’t want to be crippled and have my life ruined like you have. Crippled? Life ruined? Did I say that? No. But thanks for making me feel bad about it. What is so bad about my life that you think it’s ruined? The comment is supposed to be a positive thing, said with a ‘aren’t you good for still living with this illness’ attitude but it’s just insulting. Like most of the comments here, it makes you feel like someone has judged your life and decided it’s not worth it. So it makes you question your existence but it also puts you in this really bizarre situation where you feel like you should be making the other person feel better about your illness, or feel like you have to justify your existence to them.

Sometimes people say stupid things without thinking and the intention isn’t malicious. But if the same phrases keep cropping up, which they do, then there’s something wrong with the way we perceive illness and disability as a society. Disabled people shouldn’t have to feel like they need to prove their disabilities or justify their existence to other people. If you take out the reference to disability or illness from the statements above, would someone still say the phrase to another person? No, probably not.

Fasting Blood Tests

Today I had to do a fasting blood test for my endo review next week. I have to do a lot of blood tests, they don’t phase me at all and it’s not uncommon for me to have to do multiple in one day/week, so I’m pretty used to bruises, being poked and prodded and the ‘sharp scratch’.

Fasting blood tests can be a bit of a pain though. Again, I have to do these pretty regularly, which is fine providing they can actually get blood out of me! I’m very lucky that the pharmacy over the road does early morning appointments with a phlebotomist, which definitely makes it a lot easier. But it got a bit complicated this morning;

Fasting means you have to stop eating and only have clear fluids from about midnight before your test. This can be a problem for me because I regularly need to eat to control my blood sugar and sometimes I eat a lot overnight. Thankfully I didn’t have any hypos or anything remotely resembling a hypo so that wasn’t a problem this time.

I did, however, wake up at 4.30am with the ‘vibrating’ feeling and night sweats which means low cortisol. Usually I’d take 2.5mg of hydrocortisone to tide me over until my morning dose of steroids but I couldn’t because taking my steroids on an empty stomach gives me terrible stomach problems. Which, if they get bad enough, would mean I’d have to cancel the test, inject and go to hospital instead. Usually if I wake up and need a bump dose, I eat a couple of spoonfuls of yoghurt to line my stomach and then go back to bed. I had to choose between having a low cortisol stomach ache and therefore being awake since 4.30am or have steroid induced stomach ache because I’d had steroids on an empty stomach. I decided low cortisol stomach would probably go away once I had my morning dose so I chose low cortisol stomach ache, which has been compared on a pain threshold to a woman having contractions. It’s pretty terrible. But I only had to tough it out for a couple of hours.

The pharmacy is just over the road, but actually that’s pretty far for me to walk even once I’ve had my steroids, without me needing a rest. So it can feel like a marathon. Also, I don’t get dressed usually before my steroids kick in. I’ve been known to go in my pjs before when I’ve had a really bad day.

I also hadn’t eaten anything for a long time. So I was feeling pretty spaced out anyway. And I hadn’t had my tablets. I have a pretty strict regime in the morning and eating an hour later might not make a huge difference to most but it throws me off for the rest of the day. Combine that with delayed tablets and it feels worse.

Blood tests don’t bother me but having someone stab you repeatedly depletes your body of any cortisol further. So having a blood test makes me visibly sweat, shake and go really dizzy because of the ‘stress’ being prodded puts on my body. Unfortunately it just looks like I’m needle phobic, which I’m really not!

When I’m low on cortisol, my entire body starts to clamp down, which makes it really hard to get a vein to bleed. And then the more tries she had to do, the more my body fought back. She thought I was dehydrated but it was mostly low cortisol, which I explained when the lady tried to send me to the walk in for the phlebotomists there to use a butterfly needle or syringe.

It’s actually really hard for me to do a fasting blood test anywhere besides the pharmacy over the road. It’s really dangerous for me to travel far without having had my meds or eaten. I can’t drive or take the bus as it is, and I can’t get a taxi by myself without having had steroids. I can’t walk around or stand in queues because I haven’t had my steroids. The more unwell I get in trying to do the test the more skewed the results will be.

The phlebotomist was actually really good and came up with a supportive plan for me the next time I need a fasting test done. I was impressed because in my mind it’s my problem that my illness has all these limitations and I need the blood tests done, so I’d have to find a solution, even if it wasn’t easy. Instead, she made massive efforts to help make my life easier and was concerned about me. Because my illness is weird, not many people ‘get’ how complicated it can be, but she really did and her plan made sense.I think the other thing is I’ve become a bit immune to testing and what I do to adapt my illness into different situations. When I was explaining it to her, it made me realise that it is pretty complicated and I do a good job at getting on with it, but it’s ok to say ‘well, actually, it’s pretty tricky for me to do that’ rather than just coming up with a solution myself. I was grateful she was so switched on, showed some real empathy and seemed to care about me as a human, when she could have just as easily refused to help and sent me to the walk in 🙂

I’m not hypothyroid (!)

Despite what my health record currently says, I don’t have hypothyroidism. It got added on as a diagnosis a couple of years ago by a click-happy junior doctor and caused mass confusion- neither me or my GP was sure if someone had forgotten to tell me I was hypothyroid and I did have it or whether it was a mistake. After a billion phonecalls (slight exaggeration), repeat bloods and an appointment with my endo, it eventually transpired that it was added in error and it got taken off, with my endo writing in bold on my record ‘this patient does not have hypothyroidism’. That process took about a year because I had to wait until my annual review and once something like that has been added, only a senior consultant can take it off.

Now it’s been added back on again by a different junior doctor after a recent trip to a&e. I’m pretty grumpy about this, which, might not seem like a big deal but here’s why it’s really frustrating:

  1. I have lots of medical conditions as it is. I don’t need any extra padding out my record. Stop trying to give me a condition I don’t actually have for a change!
  2. A lot of the time, my diagnoses are listed in order of severity. Hypothyroidism always goes to the top, even though that isn’t the most dangerous condition I could have anyway, adrenal insufficiency is. Hypothyroidism can kill you, just not as fast as AI. So it’s pretty important when other doctors look at my list that they see the imminently life threatening one.
  3. People have heard of hypothyroidism but not usually of adrenal insufficiency. If we’re going to talk about endocrine conditions when having a consult, I need to talk about and explain the one I actually have a diagnosis for, and the doctor needs to be able to base their consult on this information, not what they already know about my non existent hypothyroidism.
  4. It confuses people. Aside from making it hard for doctors to devise treatment plans, when I’m admitted to hospital, people keep trying to give me thyroxine. It even appeared in the med pot once for my morning drugs, so I had to fish it out and give it back.
  5. I will actually be taking thyroxine for a month as a trial (I’ll write another post). But I’m not hypothyroid. Which makes it more important that people know this so it’s less confusing when I’m taking it.
  6. It makes me look like I don’t know what I’m on about. When you have a rare condition, you have to spend a lot of time advocating for yourself when medics don’t understand/haven’t heard of it/ are following treatment plans from the 1950s. So you need to know your stuff. If I’m sitting there adamant that I don’t have hypothyroidism but it’s at the top of my list of diagnoses, this makes me look incompetent and makes this harder. Because what doctor would add a diagnosis which doesn’t exist?
  7. It shows a lack of attention to detail. Clearly that junior doctor didn’t read my file properly or my endo’s big and bold note. If they got something that basic wrong, what else did they get wrong? People make mistakes, yes, but endocrine is a pretty sensitive system and it’s one you can’t afford to make mistakes in since it can kill you pretty quickly.
  8. I spend (and my husband) a lot of my time doing ‘illness admin’. Sorting prescriptions, scheduling appointments, doing blood tests, ringing clinics and hospitals to be the go between… it’s pretty relentless sometimes. I don’t need any extra faffing because someone couldn’t read or listen properly doing their actual job.
  9. Accurate health records are important. I’m applying for benefit and this complicates it. I’m not lying about my health conditions, clearly, but this phantom condition which keeps appearing and disappearing on my record looks a bit odd and means extra questions and complications. It also could cause problems for things like life insurance applications or if I happen to be abroad and have a thyroid related condition while away needing hospital at any point for the rest of my life- it looks like I had a diagnosis, which if I didn’t declare it (because I didn’t have it at the time) could mean insurance companies wouldn’t pay out. For example, I had a seizure once which got marked down as an ‘unconscious episode- unspecified event’ and it took about a month for me to convince my life insurance company that I hadn’t tried to kill myself, since that’s what they interpreted ‘unconscious episode’ as.
  10. Last time, it involved extra tests to get it removed from my record. I do enough tests and am prodded and poked enough as it is. I really hope I don’t have to do more to prove I don’t have a condition I already know I don’t have.

So yes. It might not seem like a big deal, but, to me it’s extra faff I don’t need. It’s a bigger picture thing, which I don’t think junior doctors always appreciate when they’re doing their admin.

Packing to go away

Next week, I’m off to stay with my parents in Cumbria for a week because my husband will be working late or working away a lot and I can’t stay at home by myself. I can just about manage during the day myself while he’s doing a normal working day, but only because everything is pre-arranged eg all my meals and snacks are sorted, I don’t have to do things like load the dishwasher or tidy up after myself and if I feel really bad I only have to tough it out a few hours before he’ll be home to help me. I definitely can’t stay overnight alone because I’m more likely to have an adrenal crisis at night time where I really would need help from someone else.

Things are a bit weird at the moment anyway for me. I’ve got two stress fractures which are sapping all my cortisol. It’s hot which always makes things worse. There’s a lot of other ‘stresses’ going on which are also causing me problems periodically. So I’m mostly spending a lot of my time lying down watching tv rather than crocheting, which is a bit sad!

Anyway, this post is about packing to go away. It’s complicated. I have to take a lot of medical stuff with me, which is a lot anyway but more so because Cumbrian hospitals (or rather hospital- don’t get me started on that rant) are not well equipped and won’t necessarily have the meds I need on site if I have to go, so the more prepared I am the better. The only way I manage to keep some of my independence is by having set routines and aids, all of which have to come with me. Pretty much I’m like a baby- I only really function if I have my routine and my way of doing things with the stuff that’s normal for me. I find it almost impossible to adapt to things which are very similar but not exactly the same.

But packing is exhausting! And I’m not even talking about the active packing bit of putting things in a suitcase, I don’t even attempt to do that! I used to be a ninja packing. My dad was in the army so I had it down to military precision at one point in less than half an hour. Now it takes me over a week.

I start by writing a list. Then I spend the next week collecting everything I need and putting it in a pile. So I tend to concentrate on finding 2 or 3 things on my list a day because I can’t manage anything more than that on top of the other things I need to do on a daily basis. My list is on my phone and I can put a line through it but still see it. And it means I don’t lose my list!

Once I’ve got my pile, my husband will (much to my dismay) throw it all in a bag haphazardly and then my mum will help me get it out at the other end and put it into places I can get to easily.

It’s hard for me to be away from home because I won’t be near my local hospital, I have to miss 2 Chiro sessions which is the only thing which helps with my pain, everything will obviously be in a different place so I can’t use my routines in the same way, I have to take a whole week of meds with me which my husband has to sort out beforehand into dosset boxes, things like washing and showering are harder so I’ll just do it less often… logistically it’s hard. It’s when I’m not in my own house it makes me realise how much I rely on my ‘systems’ to cope and how vulnerable I am and feel when I don’t have them to fall back on anymore.

Either way, I’ve got my pile almost sorted so I just need to wait until my husband packs it for me now!

And don’t worry, I’ll have my crochet packed! 😉

Pigmentation making me look contagious

In the last year or so, I’ve gradually been getting more and more random spots. Helpfully, they all seem to be on my back or my neck so I didn’t actually notice them for a while but then I got some on my chest.

I showed them to a couple of doctors who were a bit like ‘oh well, you have spots, out of everything we’re looking at now, it’s not really that big a deal’. Which it isn’t, except for the fact that when you have a chronic illness, especially a weird one, the danger is everyone assumes that any symptom is associated with that, and it might not be. Random changes to skin could be a sign of infection, virus, allergy or even cancer.

I still don’t really know what they are, but I showed them to a couple of endocrine groups I joined on Facebook and lots of people said they have something similar- pigmentation, which is a classic sign of Addison’s disease or primary adrenal insufficiency.

The weird thing is, you’re only really supposed to get pigmentation if your ACTH, a hormone from your pituitary, is really high. In primary AI, the pituitary is desperately trying to get the adrenals to make cortisol so it pumps out a whole load extra ACTH thinking the adrenals don’t have enough. But my ACTH level is undetectable. Or, you can get it because you’re deficient in mineralcorticoids because your adrenal cortex is damaged. Which, again, isn’t a problem of mine. So if it is pigmentation because of AI, then it’s weird and if it’s not pigmentation, no one seems to know what it is!

Half the reason I think it might be pigmentation is because it gets a lot worse when I’m low on cortisol, when I’ve tapered steroids or immediately after I’ve been in hospital. And it vanishes when I’m having a good day. My theory is, if it were viral or fungal it would be a crazy coincidence for it to do this precisely at these times every time. But who knows with me!

I don’t really mind them because they’re mostly in places I can’t see! And they’re not itchy, dry or painful. But they do make me look contagious, as my husband tells me regularly. I promise I’m not! I also had some on my face at the weekend for the first time, which I won’t be thrilled about if that becomes a regular feature. Putting make up on covered them a bit but it’s hard putting makeup on the back of your neck when you can’t see but also it’s sometimes way beyond my energy levels to put on make up full stop.

So if anyone has any handy make up tricks or specific make up brands that don’t involve lots of blending and contouring I’d be grateful! 🙂

Low Cortisol Can Make You Suicidal

No one told me that when I got diagnosed with adrenal insufficiency. Mostly because I think the NHS is woefully poor in the way it deals with patients with chronic, long term illnesses and their mental health in general (I’ll write another post on that), but when you have adrenal insufficiency, it gets more complicated. It’s mental health awareness week so it seems apt to write a post about this this week.

Cortisol affects your mood in different ways. Too much in a healthy person, if you’re under a lot of stress, makes you anxious, irritable and obsessive. Too little in a person makes you depressed. Dangerously low cortisol makes you suicidal.

It’s only now that I fully realise that I spent about 2 years feeling constantly suicidal, and more time whenever I was tapering my hydrocortisone feeling it on and off. In a nutshell, my steroid dose was set dangerously too low and I was waking up every morning with 0 cortisol in my body according to blood work. I wasn’t on enough to survive, so my body was using all of it up trying to keep alive, not regulating my mood. I was also having lots of debilitating physical symptoms so had to stress/updose a lot to keep out of adrenal crisis. But, because there’s no way of working out how much cortisol to give yourself because there isn’t a testing meter like there is for blood sugar, my body would peak the cortisol replacement too much too fast to combat what was going on and I’d then become incredibly anxious and obsessive. Which would then be followed by a depressive crash once the cortisol wore off, which is between 4-6 hours. This wasn’t happening every few days, this was happening multiple times a day, like a roller coaster.

I should say I wasn’t ever actively suicidal where I tried to kill myself. Low cortisol is a lot more subtle than that, it kind of eats away at you. It was passive. So I assumed everyone hated me or I’d upset everyone. I didn’t think anyone would care if I didn’t wake up the next day. I wondered what it would be like to not take my steroids because I knew I’d die pretty quickly if I didn’t. I just didn’t feel like I wanted to exist or my existence didn’t matter. My memory was so poor I’d forget anything positive but I’d remember anything negative, but a lot of it was my mind blowing it out of proportion because I couldn’t remember what actually happened and my mind filled the holes in my memory in with negatives.

This wasn’t helped my a number of things. And this is where I think the NHS let me down. I had a particularly awful endo who told me that my adrenal insufficiency wasn’t as bad as I was making out and that my problems were all in my head so I should go away and deal with those because I wasn’t his problem anymore. He also told me to stop wasting people’s time by going to a&e because there was nothing wrong with me. I got really wound up and burst into tears, to which he replied ‘oh I love it when my patients cry at me’ and said how this backed up his point. Now I know he was very wrong and he’s not my endo anymore. But at the time it made me question everything and I thought ‘maybe this is all in my head’ which obviously made it worse.

Then I had issues accessing my medication because steroids are a drug you’re supposed to only take for short periods in most cases. But not when it keeps you alive. However, the NHS and the computer system don’t realise that. So I was having monthly arguments with my GP about getting them to prescribe my medication to stay alive and this wasn’t helped by my idiot endo saying it was all psychological. Which, because I was already thinking ‘I wonder what would happen if I don’t take my steroids’, turned into ‘they actually don’t care if I live or die. Maybe I’ll just stop arguing and die instead’. Whichever way you look at it, I still had adrenal insufficiency so needed the medication to live. And by now I did have mental health problems because I was living on too little cortisol and having to argue every step of the way. On balance, is it any wonder I was depressed anyway? I’d had to give up my job, I’d lost all of my independence, I had to stop driving, I was in and out of hospital, I’d doubled my body weight, I lost all my confidence, I was pretty much housebound at one point and I couldn’t look after myself and had to rely on my husband for everything. Who wouldn’t be depressed anyway? It’s a bloody miracle I got out of bed every day! But as far as the NHS was concerned, as long as I hadn’t died yet, they didn’t really care about how I felt.

I found a new endo who did actually care and sent me to a psychiatrist. Who declared that steroids make you depressed (ironically true) so if I could just stop taking steroids then my depression would get better. And that clearly couldn’t happen so she said I wasn’t her problem either. The doctors actually used the word ‘problem’ consistently by the way, that’s not me embellishing it or remembering it wrong 😉

My new endo also let me increase my daily baseline temporarily and this was a game changer. Suddenly a cloud lifted and I didn’t feel the same anymore. I’ve been meditating for 2 years anyway and doing CBT but it had never worked so I assumed it was me being stupid and not doing it right. But, feeling slightly better on a higher baseline, I realised that no matter what I did to help my mental health, it didn’t make any difference sometimes. And it got a lot worse whenever I tapered. The cloud and the thoughts came back. So I did some research and found that low cortisol makes you suicidal. And because I don’t make the hormones which help make other people feel better when they practise CBT and meditation, I wasn’t going to be able to feel better until I addressed the chemical imbalance. Yes, some of it was because my mental health was poor because of the reasons I mentioned before, but some of it was a physical problem. And we all know that mental health impacts on your physical health so it was a catch 22.

Now I’m on different steroids entirely and I do not feel the same at all. My general mood has improved, although it’s still not great. I still get some days where I feel like I used to, but I can recognise it and do something about it. Before, I was permanently on the brink of crisis, probably a mental health one as much as an adrenal one, and I couldn’t see the wood for the trees. So low cortisol definitely makes your mood worse and I don’t think this is recognised enough in treating adrenal insufficiency patients. I didn’t talk about it much because I didn’t think anyone cared and my doctors kept making out that my mental health was just me being stupid and I should just deal with it. Why would I want to talk about it, if they already made it out to be a weakness? I just wish I’d known all of this 4 years ago, hence why I’m writing this blog in case it can help someone else 🙂

Shout out to the teachers

Teachers get a raw deal. People constantly make comments about how much holiday we have and how we finish at 3pm. Or we get compared with front line and NHS workers who save lives and how nothing we do is remotely close.

So this post is a shout out to teachers, specifically secondary teachers (because I used to be one so can comment on it), who are extremely busy at this time of year. It’s not meant to be a political post or a comparison with aforementioned NHS or front line workers, or a moaning post about how little teachers are paid. It’s a post to explain what teachers do at this time of year and why comments about long holidays and short working days won’t go down very well right now. It’s prime exam time. The goal is to have all your coursework in before the Easter holidays so that you can mark it all and still have a couple of weeks to get kids to make any changes. But Easter was early this year which means less time for the kids so invariably means intervention days with the kids during the easter holidays, if you weren’t already doing these, and no sleep for the entire of April/May while you mark it.

The government wants your child to be a statistic (ok, slightly political but relevant), so in a lot of subjects, their target GCSE or A-level (or other qualification) grade isn’t based on a teacher assessment or even based on that subject, it’s based on data which comes from primary school SATs/end of year 6 data usually in English/maths/science. So a music target is based on an achievement in science, for example. For many pupils this grade is set too high so they’ve already been set up to fail. Not to mention that the exam syllabi keep changing every 30 seconds and some students were actually having to sit exams for content they hadn’t learnt in years 7-9 and had to have crammed in, rather than having 3 years to learn it because a politician didn’t understand how schools actually work and decreed it.

Because of league tables and how schools are funded by the government, schools need the pupils to achieve their predicted target grades. If you don’t meet your stats, you don’t get funding for that child and if you don’t get the money, headteachers have to make difficult decisions about what (or who) to cut. Which creates an enormous amount of stress for the child and teacher. Note- teachers always want the best from their kids work wise and want them to achieve their targets. But these have to be reasonable and achievable targets, not ones generated by a computer and based on league tables and other random data.

So this time of year is fraught. And students are bombarded every which way because everyone has deadlines to meet and target grades to achieve. It’s too much for them, so at least three times a day you’re trying to support a child who’s feeling broken by the stress of it and has had a meltdown, had a fight with someone or just generally isn’t coping. This is normal stuff that teachers do on a day to day basis, but because it happens more often in exam time, there’s less time in general, so you find yourself torn between making sure the mental health of the child in front of you improves and trying to keep other students on track with their intervention.

Intervention means where a student isn’t meeting their target grade, or in danger of not meeting it, so you put in place support measures for them. These sessions usually take place at lunchtime, before school, in teachers’ ‘free’ (planning and assessment time) periods or after school. Sometimes at weekends too. Students don’t like coming to these sessions so you usually have to hunt them down. Or they’re needed in other subjects. And they feel pulled in all directions so they do what most people do in circumstances like these- panic and stop turning up to any of them.

Which means a lot of hunting and phone calls and, in some cases, turning up to children’s houses to get them to come in or give you their coursework. It’s knackering, both physically and mentally, and the more time you spend chasing one student, the less time you have for the others. But this is time you don’t actually get as extra on your timetable, you’re still expected to teach all your other classes and run all the clubs and do the duties you already had. And you can pretty much guarantee that the student you’ve been desperate to give help to turns up at your door when you’re teaching a year 7 class, but you know if you let them go, you won’t see them again. So then you end up trying to teach a class while also giving intervention to a student. Or 3.

And teachers are humans too. So when stressed teenagers aren’t coping, they tend to shout and swear at the people trying to help them. Which, even though you can understand and empathise, you’re stressed and tired too and no one appreciates being sworn and shouted at multiple times a day. The rest of the school pick up on this atmosphere, meaning ks3 pupils get more fraught and tense and teaching them becomes more challenging behaviour wise. They also still deserve a decent education, they need to have assessments and you still have all their planning and marking to do. Believe it or not, you can’t rock up and make something up on the spot and get away with it!

It’s the time of year for options to be made for pupils in the year below choosing GCSE and A-levels. If you don’t have enough pupils recruited, you can’t run the course. But everyone is in the same boat so you’re ‘competing’ for students to be on your courses. I tended to say ‘pick a subject because you love it, not because another person tells you to’ but it didn’t make it any less stressful. You have to offer taster classes, prepare presentations for parents and showcase your department.

Despite putting in the extra work at school, you don’t get to leave it all at school. You have to do all the marking you didn’t do in the day. One thing that people don’t realise about intervention is that it all has to be documented. Every phone call, chat with child, action plan, progress made has to be documented as evidence for people like OFSTED. Which means by the end of the week, you can find yourself having written the equivalent of a primary school teacher’s class worth of end of year reports just about your GCSE class. Every week for the whole of exam season.

Another thing that people don’t realise is that social media, educational social media and emails are used all the time by students. Which is great for so many things and it means you can offer help from home while they’re working on it. Great for the kids, not so much for the teachers. If you don’t reply straight away, chances are they’ll say ‘you didn’t reply so I didn’t do it’. And you need them to do it. So you end up hearing the email ding and picking up your phone straight away to deal with it. Kids like to do their work at about midnight in a lot of cases (not good for them either) so I have been known to be emailing help at 1am when my phone dinged and I woke up to deal with it.

And everyone underestimates the emotional aspect of teaching. You worry about your kids- and they are ‘your kids’. If someone was particularly upset or had a crisis of confidence, you worry if they’re ok. You worry about the kid who isn’t coping. You worry that you’ve not done a good enough job for them. You worry that you’ve failed them by not giving them enough help. I used to wake up in the middle of the night singing pupils’ compositions (which usually meant they were good if they were stuck in my head). You take it personally even though it’s not because even though the government only sees kids as a statistic in a league table, you can see them as humans who are put under an unbelievable amount of pressure to achieve a target grade decided by a computer when they were 11 years old, before they’d even set foot in a secondary school.

GCSE and A level classes make up a lot of a teacher’s timetable, but in my subject’s case, I still also taught all of key stage 3. So that’s 8 classes per year group for year 7 and 8 x 30, which is the average number of students per class. Summer term is usually parents’ evening for year 7/8 in most secondary schools and most of the time, you give them the academic report at the same time so they can talk about it. So that’s 16 classes x 30 = 480 reports. You can’t just write your reports when you want to and you can’t always do this from home because the reports are usually done on SIMs which is one of the most irritating programmes which exists- the ‘session’ is usually only open for 6 weeks and the remote access is so irritatingly slow it’s enough to tip anyone over the edge. So 6 weeks x 5 (working days) is 30. 480 reports divided by the amount of days (30) is 16. Meaning as well as all the exam stuff, you also have to write 16 year 7 and 8 academic reports per day just to be able to get them in before the deadline. This would be a lot of extra work anyway, never mind when you’re already up to your eyeballs in it. And copying and pasting and changing s child’s name isn’t allowed.

Admin and running around isn’t why you became a teacher though. Working with the kids is why you became a teacher. Seeing them achieve and working hard and enjoying your subject is why you do it. When something clicks with a student, it’s a great feeling for both of you. I really liked the challenging schools I worked in, and, thankfully, the schools I worked in placed the emphasis on the students being seen as humans and not statistics and they fought bloody hard for the pupils. But academies and other schools don’t necessarily care if English is the child’s third language. Or if someone’s mum killed herself the year before and the child is still struggling. Or if someone broke up with their boyfriend (which has a massive impact). Or self image issues. Or if it was Ramadan during exam season. Some kids don’t eat breakfast because there isn’t any at home, so I used to do a breakfast club in exam season so I knew they’d go into exams with the best chance.

Notice I’ve never mentioned pay at any point. You don’t get a bonus if your kids get their target or exceed it, like you do in other sectors. You don’t get paid overtime or antisocial working like you do in other industries. You definitely don’t get the support of the general public like the junior doctors do and I think you’ll find a lot of schools have started sneaking in the extra hour here or there that teachers don’t get paid extra for but it takes time away from their prep time. Teachers don’t go into teaching because they expect to be paid well. Teachers go into teaching because they love it and care about the students.

So yes. We might get 13 weeks holiday on paper. We might technically finish at 3pm according to school bells. But while you’re actually conscious, and even sometimes when you’re not, you don’t stop working during those apparent free times, meaning comments about holiday and working hours will not be well received at this time of year! 🙂

Day Trip to the Beach

A friend and I have been trying to go on a trip to the beach for about a year and failed for a number of reasons. So this week we combined a trip to the beach at Barry Island with seeing a friend who lives near ish. It was vaguely spontaneous in that we picked a day that looked sunny, made sure our friend was free and off we went!

It was a successful trip! I mean, look how lovely it was, and how empty of people!

Going out for the day in term time is so much better than in the holidays and places are busy. One perk to not being in teaching anymore…

I was a little bit apprehensive, I admit. Not about spending time with friends, but me travelling anywhere can be complicated and in the past it’s not been a good idea/possible/safe/I’ve not been well enough. I’m pretty practical about my adrenal insufficiency, but it takes me a bit of planning. This day trip was a bigger deal than normal for me because:

  • It’s the first time I’ve left the county without my husband pretty much for 2 years. I carry a lot of info about my condition in my emergency pack, wear medical ID and also have a tag that I put on the headrest of the car so that if we have an accident, people know that I’ve got a medical alert. But it all depends if people find those things/pay attention to them. My husband obviously knows everything about me or knows exactly what to say. My friends know me well too (clearly!), have been injection trained and wouldn’t let me die, but it’s a big deal not having the ‘safety net’ of my husband nearby.
  • I’m not ‘known’ or red flagged when I leave the county. So in the midlands, if I ring an ambulance, I get a quick call out and the crew get given a lot of information about me before they arrive on scene because of the alert. But that only works with my local ambulance service, not anywhere else in the U.K.. A similar thing happens in my local hospital, but again, not anywhere else in the U.K. For context, I stopped visiting my parents for a while when I was really unstable because the hospitals where they live are so rural (and far away) that if anything happened I’d probably die.
  • It’s not that long ago that I had a particularly bad experience in hospital where people did have my full records, let alone somewhere where they don’t.
  • I’m an unusual case of an already unusual illness.
  • I sometimes find long distances in cars and new places stressful because I need the toilet a lot because of my diabetes insipidus. Which might sound stupid, but it plays a massive part! I knew my friends wouldn’t mind, but it still played on my mind.
  • I woke up that morning with my ‘adrenal crisis’ dream. It’s basically my body telling me to wake up and have more steroid because I’m getting low on cortisol and I could be heading for trouble. I dream I’m having an adrenal crisis and usually wake up as a I fall unconscious in my dream. So it’s actually pretty useful! But it does usually mean that I’m in for a bad day. However, despite having the dream, I felt ok when I woke up, so I guess that one was just anxiety.

All those things being said, I can’t live my life in a bubble and never leave the house. I could get knocked over by a car going to the shop and die like a normal person. Random things happen. I was also reassured in that my friend who drove us is super practical and calm and we spend a lot of time together, and that the friend who we were seeing is a nurse. I’ve also been considerably more stable since changing my steroids, so unless I’d woken up feeling terrible, it was likely I’d be absolutely fine, which wasn’t the case on my old treatment plan. However, the more you plan for things going wrong, the less chance there is of things going wrong. So I was still prepared!

And we had a lovely day! It was sunny weather, we had some lunch and chatted while sitting on the beach. It felt like a little holiday! I felt a bit more like ‘the old me’ and had a kind of ‘this is the kind of thing I’ve been missing out for the last 4 years’. It gave me a bit more confidence. It might be something that other people take for granted, being able to go on a day trip with friends, but it’s not something I’ve been able to do for a long time. And I did have to make sure I laid down for 2 days before so that I could manage it! It might only be a baby step, but it felt like a pretty big one for me! 🙂