Why I Don’t Want to View the Staff Who Care For Me As Humans

When I say ‘humans’, I mean people who have bad days and who have feelings. I see a lot of people posting on social media about how we should remember that ‘doctors and nurses have feelings too’ and ‘HCPs also have bad days’ or ‘you don’t know what their last job was so don’t be disrespectful’. And let me be clear here, no one deserves to face physical or verbal abuse while during their job. But, to be blunt, I don’t care about their personal circumstances or what type of day they’re having. They’re there to do a job. And I’m always a polite and respectful patient.

I’ve been spending a lot of time around health professionals since 2012. In less than a decade, I’ve probably seen more medics than most people will see in their entire lives. I’ve been on the receiving end of endless rants about how the NHS is short staffed, overworked, how other people haven’t done their jobs properly, how nurses have a lot going on at home, how people have worked past the end of their shift… I’ve given healthcare professionals ‘counselling’ when they’ve got upset about something that happened with another patient or their husband. I’ve heard waaayyy too many stories of people’s sex lives that I don’t care about. Far too many times, I’ve coached junior staff about my illness and even the best way to treat me. Nothing has changed since 2012, so ranting about it to me isn’t going to make the slightest bit of difference. And part of me wants to scream ‘I’ve heard this rant before, get over it already!’ when I can sense how a conversation is going.

Having a chronic illness is hard. Being in constant pain, having debilitating symptoms, having your quality of life seriously limited is frustrating, unfair and exhausting. Having a life threatening chronic illness is even harder. You walk a fine line every day. It’s so hard to put into words the responsibility you have every day to do things just to keep yourself alive, let alone the feelings you have that surround having a scary illness. But life happens and you have to get on with it, trying not to be bitter and twisted about the fact that you’re dealing with a lot, trying to disguise huge bits of it from your friends and family so as not to worry them or trying to get through each day in one piece and give yourself a reason to drag your arse out of bed and keep trying the next day. You never get a break from it, it’s always there. It impacts on every aspect of your life. You can’t pack it off to your grandparents for a weekend, like you do with your kids when it gets a bit much. And it comes with you on holiday, unlike taking annual leave from work. It’s relentless.

Being in hospital or going to medical appointments is pretty much the only time someone else remotely takes the wheel. And even then, because my illness is rare, I spend a lot of time working out who I can trust enough to let drive for a bit so I can ‘take some time off’. It doesn’t matter how supportive family and friends are, they’re still family and friends, and you always hide something from them. In hospital, someone else can do the steroid maths and make sure I’m awake to eat or take pills. But I’m also at my illest or most vulnerable when I’m in hospital, because otherwise why would I be there?

So I don’t care if my nurse has relationship problems. Or if my doctor is feeling under the weather. Or if my paramedic has come from a tricky case. As a human being, I obviously do, but as a patient I really don’t. I need my healthcare professionals to have it together, so that I can actually let out my feelings about what’s happening to me, to someone who can take control and look after me until I can pick myself up and take over the reins again. The worst thing a HCP can do when ‘supporting’ me is cry. It pisses me off so much. I don’t see it as empathy, I see it as a person who can’t keep it together enough to let me have the space to have a reaction. You can show empathy without actually showing me your feelings. Otherwise I feel like I should be comforting staff, rather than the other way around.

I need my HCPs to be professional, to have a sense of humour and treat me like a human and not just a bed number. Like I said, I’m always polite and respectful. I don’t want to hear rants or bitching, and I definitely don’t deserve to have a sullen or sulky member of staff treating me. As harsh as it sounds, if they can’t keep their own feelings in check when dealing with me, then maybe healthcare isn’t the job for them. I need my healthcare professionals to be dependable and have it all together, so that I can have a tiny bit of respite from it all for a few hours.

At the end of the day, they’re trained and paid for what they do while they’re in hospital. I’m not. By all means, chat to me, I’d actually really quite like that. But they shouldn’t use me as a sounding board or free counselling or take their anger out on me.

My week with the NHS: 12th November part 2

You can catch up with the first part of the week here

Friday

I’m still carrying on with my 24 hour urine collection and fasting for my blood tests. Endocrine tests are a bit more time sensitive than others in that they have to be done so as to catch the hormones in the right window. So I was very glad to see the phlebotomist arrive bang on 8am to do them. And I could eat my breakfast at the right time too!

My new healthcare came in, gave me my chart and asked me to record everything I was eating and drinking. Much better for me not getting asked every 5 seconds if I’d opened my bowels yet and how much water I’d drunk. Some HCAs ask you, some just guess.

Being on the endo ward meant I actually got to see an endocrinologist consultant! However, we didn’t see eye to eye. The impression I got was that he hadn’t really looked at me and my chart because he asked me a few questions about my symptoms, said we were waiting for gastro input and that I should be fine back on oral hydrocortisone. I agreed with this so asked him what dose he was charting and he said 20/10/10, which is the U.K. standard stress dose for AI. This I didn’t agree with. My baseline is 30/15/10, that’s only a 10mg increase from my baseline and a massive comedown from 200mg a day of IV, which is what I’d been having. Unfortunately, I don’t think he wanted to lose face in front of his junior doctor because he was adamant that he was doubling my dose, which he clearly wasn’t. We argued a bit and he said I’d be in hospital until at least Saturday so he would ‘consider reviewing it if I wasn’t tolerating it’. Which is doctor speak for ‘I have absolutely no intention of reviewing it unless you’re dying, I’m just saying it to get you to shut up’.

It didn’t sit right with me so I buzzed my healthcare (who was fab) and said so. It’s a bit difficult when the consultant doesn’t see your way because they’re the top of the pyramid and they also hold all the cards- annoy them completely and you don’t get anything. But I also knew he was wrong. The HCA sent the junior doctor to see me, who was also fab. I asked if he was an endo (he wasn’t) and asked if he knew what kind of endo his consultant was. Which he didn’t answer so I knew from that he only had limited knowledge of AI. I asked him what his knowledge of it was and he said ‘how about you tell me your rationale and I’ll tell you if I understand or not’. He agreed to take it back to his consultant and came back 10 minutes later and said the consultant had approved my plan. So a bit stressful but I was right to pursue it.

My nurses were on the ball with my Hydrocortisone which made me very happy. They even brought it to me early to take on time if they knew they were going to start a job that they couldn’t leave when it was due.

I spent the rest of the day trying to work out the gossip from the prisoner and speculating what she’d done to end up in police custody in hospital. I’d decided that she was a criminal of sorts because I heard the police moaning to one of the doctors about the fact that they couldn’t get a scan organised for her until next week and how much money this was costing everyone. You’d like to think that if she was a victim of a crime they’d be a bit nicer!

My night healthcare came and took my chart off me saying she wanted to write down everything I was charging instead. Problem is, I realised that I’d actually been drinking triple what they were charting because people had just been looking at the level of water in my jug and seeing it go down, but not realising that I’d asked for 2 more jugs since they’d last been in. I tried to explain this to her but she didn’t get it.

Saturday

The consultant had charted my morning hydrocortisone dose at the wrong time but my nurses were happy to give me it at the time I wanted it (As per my endo instructions). I just needed the doctor to change it on my chart in case I got nurses who weren’t reasonable about it.

Saturday was dull. Gastro hadn’t been to see me on Friday because they’d been busy and there wasn’t anyone in at the weekend. I didn’t have a great day anyway because transitioning from IV to oral is always hard and I was struggling by now so I mostly slept. I did have a bit of light relief when the cleaner came in and told me that the lady was definitely a criminal because they were escorting her to and from the toilet.

The consultant on Friday had said aim for weekend discharge, I just didn’t know when. I assumed that as I hadn’t seen the doctor that I’d be staying another night. Unless a doctor charts that you’re ok to be discharged, you can’t be. And in my case, only a consultant can discharge me because I’m complex. So I was guessing someone else had come along since our conversation on Friday and said I needed to stay.

Sunday

This morning I woke up with a hypo. They’d been testing my blood sugars regularly in the day because I’m on steroids / some people think my diabetes insipidus is diabetes (it’s not, but I am reactive hypoglycaemic which no one has heard of), but I don’t usually wake up with a hypo. So I was force fed juice and glucose tablets.

I’d got to know the staff a bit by now so I asked my nurse for the day to read my chart and tell me what the latest was. She came back later in the day and said that it had said weekend discharge but the junior doctor (the same one from my endo review on Friday) had wanted to keep me until my 24 hour urine results were back before letting me go. But he’d also hoped gastro would have come to see me and they hadn’t so I could be discharged as long as I didn’t need any TTOs (prescriptions to take out). I did because they’d switched one gut protector to another, but in comparison to all my other meds (which have to get signed off by a senior pharmacist) it’s nothing, so easy for pharmacy to sort.

Meanwhile, one of my inmates, Mrs Kaur, was not enjoying having a prisoner on the ward with her and kept shouting at her. Except she didn’t speak any English so I can only guess what she was saying.

The junior doctor came to see me about 10 minutes after the nurse told me I could go home and said ‘I can justify keeping you here another night’. Which is doctor speak for ‘I can’t tell you what to do but I think you should stay another night. While you’re here, you’re taking up a bed and people have to treat you and you need to get to the bottom of this. And your obs aren’t great so you’re probably better off here anyway’. He also said that the specialised endocrine tests I’d fasted for on Friday had been put in the wrong coloured bottles so the lab in London wouldn’t accept them. It makes sense for me to do fasting tests in hospital because it’s pretty complicated trying to get me to do an early morning test, without having eaten and in a place (ie hospital) where they can get it from my blood stream to a blast freezer thing to a courier within 15 minutes. I hadn’t seen gastro yet either so I decided to stay.

Another junior doctor came to ask if I’d be involved in a research study. All they needed was my signature and the blood they’d already taken. Seemed pretty easy to me so I was happy to agree!

The first junior doctor came back with the right coloured test bottles and said they were the only 2 in the whole hospital and he’d spent ages tracking them down. But unfortunately he wasn’t in the next day and he didn’t want them to mess it up. So he asked me to hide them in my room and give them to the phlebotomist when she came, saying about the 15 minute window and the time sensitivity nature of it.

The police ended up chasing after the caterers because they took the tray away from the prisoner before they’d had the chance to count the cutlery they’d given her back. Quite what she’d have been able to do with nhs cutlery I don’t know, since it barely cuts food, never mind be used as a weapon, but it was entertaining anyway,

My night nurse this evening was one I’d had ages ago while on the endo ward, but was actually an endocrine nurse! Hooray! He got a bit excited too when he realised he actually had an endocrine patient to treat, although this dwindled a bit when he realised I wasn’t diabetic. I like him. Although my healthcare and him shared a language so that meant they spoke in that instead when at the nurses station which seriously hampered my eavesdropping for the night! Much better for patient confidentiality though…

My week with the NHS: 1st October

Monday

At the end of last week, I tried and failed to get my new med added to my repeat prescriptions and no one would give me it because it was ‘new’. So I ended up missing 2 doses. Ironically, my BP was probably the best it’s been in a little while all weekend!

My husband rang up in the morning to ask what was going on. Turns out the doctor hadn’t even processed or signed the script, so the receptionist vowed she’d get it sorted and would send it to the pharmacy. What I suspect happened is whatever locum was on prescriptions that day didn’t want to have to deal with me and my complex health either, so probably passed it on to my actual GP, and it vanished or never got given to her.

Mid afternoon, the surgery rings me and says we need to go get it because they can’t send it to the pharmacy. Fine, except my husband always tells them to ring him back and it should say on my file that they should ring him in the first instance. This is because I was having to stay awake a lot when dealing with this kind of thing, when I should have been asleep. But if I go to sleep and my phone rings, I’m not with it enough to be able to form a sentence but also it massively jolts my adrenal system. So we signed a form to say my husband could deal with some things on my behalf, but they don’t always follow it…

I text my husband to ask him to pick it up on his way home from work, he took it to the pharmacy and finally we manage to get the tablets!

Wednesday

It’s now time for my monthly repeats to go in. No one laughed at me this month for having a long items list, which is good. I also booked my flu jab for next week. Certain groups of people are eligible for the flu jab; the elderly, pregnant people and people with chronic conditions which might leave them more vulnerable. Most GP surgeries run designated clinics and a lot of pharmacies also offer them.

Thursday

  • My letter from my consultant from our appointment came today. Whenever you see a consultant, they summarise what was said along with any new treatments and test results and send a copy to you and your GP so everyone knows what’s going on. In theory, the GP should be able to access it digitally the moment it gets authorised by the hospital. But that requires the GP buying into the ICT system the hospital uses, which mine hasn’t. It sometimes takes about 6 weeks for the letter to arrive, which can be annoying if your GP needs to issue any repeats before it gets there- they’re obviously not going to give you new meds until they have the directive telling them to, but you need to take them because your consultant says to. This is why you tend to get given a hospital prescription for the first month or so when the consultant changes things.
  • A pretty quiet week really! But weeks like this are welcome 🙂
  • My week with the NHS: 3rd September

    In comparison to last week, this week was quite quiet!

    Monday

    My prescriptions needed picking up so my husband went to the pharmacy. The pharmacy couldn’t find them and said the GP hadn’t done them so he came back empty handed. This was a problem since some of them were about to run out. I usually leave a week between ordering and when they’ll run out as a buffer but that had been when I was in hospital.

    Here’s what’s supposed to happen: you can set up repeat prescriptions so that you order them either directly from the pharmacy or from your GP via reception. A doctor will print and sign the prescription, then you either pick it up from the GP and take it to the pharmacy or the GP can send it to the pharmacy directly and you pick it up from there. It should take about 2-3 days.

    The problem is when the pharmacy are saying the GP has lost it and the GP is saying the pharmacy has lost it. Or, they’ve lost part of it so you’re trying to work out which items are missing. Or, because of the way the computer is set up, ‘computer says no’ to reissuing some items because it thinks you shouldn’t have run out so you shouldn’t be allowed any more of them. Eg if you take 28 tablets a month, some months you’ll need to put 2 prescriptions in in one month, but the computer won’t let you do that automatically. But it also, helpfully, doesn’t necessarily tell the person issuing it. And if you have a lot of items like I do, you don’t tend to wait until you’re nearly at the end of a box before asking for more because I’d be putting in repeats every day sometimes, it’s easier for everyone if all of my items get put through at once. Providing the computer cooperates and no one loses any pages of the prescription.

    Another problem is the computer flags certain prescriptions as ‘you shouldn’t be taking these 2 together’. Dex and hc are both steroids, which means the computer thinks I shouldn’t take both. But I need to. Or it doesn’t like cocodamol or tramadol together either. But if you request them on different days, it’s fine and it goes through. A large part of it is that if the receptionist is the one putting the repeats through to the doctor, they’re not clinical so don’t know if these things are ok or not and they have to do what the computer says. And they can’t override it.

    So. Are items missing because the computer objected, the doctor hasn’t done it, a page went missing, no one picked it up from the doctors to take to the pharmacy, the pharmacy haven’t processed it or some other reason? The whole lot had gone missing so it was probably all sat in the same place. My husband went back over and asked them to look again and they found it- I have so many items it goes in a separate section and the assistant just hadn’t bothered to look there. But it still took half an hour to sort, which is no big deal, except when you start adding up all these half an hours, it gets a bit tiring.

    Then there’s the added fun of when the pharmacy has to order stuff in and you’re owed certain bits. Then you have to go back and get more later in the week. Some pharmacies text you, I just know when the delivery is so go after I know they’ve been.

    Oh, and there’s also no national computer system for the nhs. Half the time the systems don’t joint up and talk to each other anyway.

    Tuesday

    When you’re discharged from hospital, you get given a discharge note and your GP gets sent a copy. It just outlines what you were in hospital for, the tests they did and if there’s any follow up. I was given mine to hand in to my GP (quicker, in theory) because the docs wanted me to repeat some blood tests in a week. I didn’t need an actual appointment for this, because I can do blood tests at my pharmacy over the road, I just needed the blood form. So I wrote a note with the letter asking them to print a form and I’d collect it.

    Wednesday

    More patient admin- my occupational therapy appointment was originally set for after my endocrine consultant appointment so we could work with the results given. Except because my endo appointment got cancelled, this one (today) needed moving too. The next appointment isn’t until November though, and this isn’t the type of clinic where they can ‘make space’ or force book you in sooner.

    Friday

    I hadn’t heard anything from the doctors about collecting the blood form, usually they ring and say ‘come get it’. So I asked my husband to ring and chase it. They said they hadn’t received it, but it turns out no one had opened any post for 3 days. They told my husband it would be waiting at the pharmacy. Then a bit later on, they rang me and said to pick it up from the surgery instead. My husband went to pick it up from the surgery, they couldn’t find it and they said it must have gone to the pharmacy. But they printed another one anyway. (Spoiler alert: they also sent one to the pharmacy, so that caused a bit of confusion when I did my test this week)

    There’s a lot of backwards and forwards when you’re chronically ill. And my husband and I are organised and know how the systems work, it must be a nightmare if you’re not. I appreciate that the system has flaws and people are likely to make mistakes because they’re humans, but nothing is ever as straight forward as it could be, which would make our lives so much easier! The thing to remember is that everything takes a lot more effort, forward planning and stress when you’re ill and trying to do these things, so even the simplest of things like chasing a prescription wastes energy that then can’t be used on something else. Considering the NHS is used by sick people, it could be made slightly more user friendly/efficient to help us.

    August and Junior Doctors

    August is when all the new junior doctors start in hospitals. I do actually like talking to junior doctors because they tend to be very enthusiastic, they ask lots of questions, and they actually talk to me like a human. They haven’t yet been conditioned to do everything as quickly as possible yet and they’re still finding their way meaning they still take pride in their bedside manner and are trying to impress their supervisors.

    However. Having been a teacher, I get that they have to learn somewhere but I’ve had a few amusing encounters on this hospital admission so far. I’ve seen a lot of junior doctors because the consultants keep bringing them to show me to them because of my adrenal insufficiency but also because my presentation of AI is also unusual. Here’s some of what’s happened this week (so far):

    – one doctor spent a lot of time bragging about a trick she’d learnt as to how to get a cannula in easily. Then couldn’t. She should have maybe saved the bragging until after.

    – I had to teach two of them how to turn call buzzers off. One nearly pulled the crash alarm instead.

    – another told me that she wasn’t farting when her shoe squeaked. Then said ‘am I allowed to say farting or do you think it’s a rude word?’ and had a bit of a panic

    – it took one doctor an hour to try to get a cannula in, bearing in mind I needed my IV HC pretty sharpish and being poked with a needle for an hour definitely didn’t help. I told her to try a smaller needle (after half an hour and she looked like she was going to cry) and pointed to a vein which usually works, which it did but then she got so excited she’d got it in that it fell out again. Later on she asked me if I thought it had tissued, not as in ‘can you feel it going up your arm’ but like ‘can you check my cannula work for me’. It had tissued, even I could see that!

    – one lady’s ponytail wasn’t tight enough so kept falling on me when she was trying to get blood. Then she got it tangled up in her stethoscope and my IV line.

    – more than one has counted themselves in for sticking needles in me. I don’t think it’s for my benefit since it’s always done quite quietly.

    – two have said ‘hello my name is ‘ and then said my name rather than their name. At least they’ve made the effort to learn my name!

    – one doctor talked to my veins for a while and then said ‘pleeeeassssse go in this time’ before stabbing me. I wasn’t overly reassured by this!

    – a cannula tissued quite spectacularly and made my hand and arm swell up like aunt Marge from Harry Potter. I pushed my buzzer and the doc came in and said ‘oh my god that’s so bad I’ve never seen that before’. Neither had I so I was a bit like ‘what, an I going to continue swelling like aunt Marge from Harry Potter?!’

    But, like I said, enthusiastic and friendly. So I can put up with a few eccentricities while they learn 😉

    I finished my thyroid trial

    And it was a pretty horrible 5 weeks! My thyroid still works, but it’s sluggish and it’s the bottom end of normal according to bloods. So my endo put me on levothyroxine for 5 weeks to see if my symptoms/blood work improved. I haven’t had the test results yet, but equally I haven’t had a stressy phonecall or letter from anyone telling me that there’s anything untoward, which is what happens within 48 hours whenever anyone runs a cortisol test. I’m guessing it was all fine.

    Anyway. I don’t think me and thyroid meds get on. I hated it and felt pretty terrible for the last 5 weeks. More so than usual. I felt more limited by everything, in that things I could manage before I couldn’t anymore. I was sleeping a lot more, I had pretty much zero tolerance to anything that I could have ‘maybe’ managed before and I felt like I had less control over managing my illnesses than before. Adrenal insufficiency is an unpredictable illness and you can do absolutely everything right and external factors you can’t predict change things. But even the things I was trying to preempt seemed to make me sick. It was just a bit of a nightmare basically.

    I also had 2 hospital trips during this time, a UTI and I had bad diarrhoea every day. Which, for the people who know about AI causes masses of problems with absorption of tablets, not being able to keep hydrated properly and the fact that being that ill every day for 5 weeks is a stress on your body so requires careful management. I stopped taking the thyroxine, and, apart from my body working out how to adjust again, it seems to have stopped, which I don’t think can be a coincidence. Aside from that, having diarrhoea every day for that long is pretty miserable anyway, let alone when it can also kill you. One thing that I’m massively annoyed about is despite not keeping very much food in me for 5 weeks I somehow have put on weight, whereas before I’d at least been consistently the same weight for 8 months. How is that fair?! Again, I’m blaming the thyroxine…

    The schedule I had to follow so I could take it was a bit of a pain and not being able to eat or have steroids overnight just added to generally not feeling well. The only positive thing I recorded from my time on it was that my overall quality of sleep was better than when I stopped taking it. I’m not sure sleeping better is worth the extra myriad of symptoms when I’m awake though.

    I’m a bit sad that it didn’t help because if it had it would have been a tiny step closer to getting a slightly better quality of life, which isn’t great right now. But I’m not overly surprised- while my thyroid works a bit, my body is going to be constantly trying to balance itself. The more synthetic things you put in, even if they’re needed, the more it’ll fight back to find that balance. And it can’t possibly find a balance because hormones are designed to change as quickly as the wind can, but they obviously can’t if you only take one pill a day and expect the same results. I suspect all of my symptoms that made me feel so ill were because my body was having a strop at having the thyroxine trying to upset it.

    The good news is I don’t have to take it anymore (for now). The bad news is it didn’t work in the way we hoped. Back to the drawing board!

    Can we stop saying ‘fighting and losing battles’ with illness?

    Or at least think about how we talk about illness and the words we use?

    Here are some phrases which get used a lot about illnesses:

    – fighting cancer

    – lost his/her battle with <insert illness>

    – s/he’s a fighter, s/he’ll be ok

    – s/he’s going to beat it

    – s/he lost/won the battle

    There are more, but you get the idea. I really, really dislike these phrases. I’m aware they come out of a place of love, of solidarity and support and are said to show how courageous the person is with the illness. But they’re actually pretty damaging for lots of reasons.

    ‘Fighting’ implies that you can do something about illness. If you’re taking your meds and following your treatment plan in whatever form it takes, you can’t do anything more. Closing your eyes, crossing your fingers and clicking your heals together 3 times while whispering ‘I can fight this, I’m a fighter’ won’t make the slightest bit of difference. Bodies are amazing, but there’s only so much they can do, even combined with medicine. Illnesses win, despite our best efforts. But what you’re left with if your illness declines and you’ve had people tell you how much of a fighter you are, is this niggling feeling that you didn’t fight hard enough. You feel like you’ve let people down. And you don’t need guilt, stress and anxiety on top of everything else.

    You didn’t lose a battle if you didn’t stand a chance in the first place. No one says the Japanese lost their battle with the atomic bomb when it was dropped suddenly on Hiroshima in the Second World War. They were ambushed, they didn’t see it coming. That’s what happens with illness. Sometimes you don’t stand a chance. To say that someone lost their battle when they die is really patronising and belittling- it implies, again, that they didn’t do enough or didn’t mobilise the right forces. I know it’s usually said to indicate how long someone has been sick for and how challenging it was, but there’s still an element of ‘blame’. And we all know how people love to tell chronically ill and cancer patients that eating kale, drinking smart water and taking up yoga will cure them of their illness, right?

    Positive thinking doesn’t cure illness. You can be positive about your treatment and do all you can to physically and mentally help yourself, but positive thinking alone doesn’t cure anything. It actually just puts you under an immense amount of pressure to be ok with everything that’s going on, which is unrealistic and impossible to do.

    Chronic illness isn’t a series of battles with respite, it’s constant. Some treatments work in cycles, or you have periods of time between appointments and more tests. Or your illness is here to stay and you have to learn how to live with it. Regardless of how it manifests, people seem to have this idea that people ‘fight’ illness for a pre-determined amount of time, then go back to their ‘normal’ lives and get ready for the next ‘battle’ with renewed energy. But that’s not how it works. Let me tell you, it’s constant. You don’t get a break. You never feel rested, pain or symptom free or ‘go back to normal’. Some people are very lucky in the sense that they might have normal ish periods of time, but they probably also have horrendous ones too which more than make up for it. Imagine having a cold constantly times by 10 and how enthused you feel by someone telling you that you’re ‘winning the battle’ when actually you feel like you’re waist deep in mud in a trench kind of hoping a stray enemy bullet puts you out of your misery. But even if you were at breaking point, you wouldn’t feel like you’d ever be able to admit it because you’re supposed to be a fighter, battling against your illness so you can win the war. That’s what people keep telling you anyway… and if you’ve not got cancer, you should be ‘grateful you don’t have cancer’. And if you do, there’s always kale and yoga you should be doing 😉

    It implies that our lives are a constant battle field. Illness sucks but it’s still part of someone’s life. You hear about cancer kids liking the familiarity and routine of their treatments because that’s all they know. Saying that everything is a constant fight implies that our lives aren’t as good or are on hold or chaos-ridden. Which they might be, but they’re still valid and we don’t necessarily want to be reminded of the chaos when things are seeming slightly less so. To say people are constantly fighting illness suggests people waiting for something to end (in either death or cure), when really people with illnesses are trying to get through life just as much as anyone else is.

    It’s a very British thing to trot out phrases you hear and think that they’re ok and positive to say. It doesn’t help that big media outlets like the BBC are particularly bad for saying all of the phrases above, so they kind of get engrained in our subconscious. Illness in whatever shape or form is hard and all relative to circumstance. Support doesn’t have to be telling people how brave and courageous they are for fighting illness. Or kale and yoga! It can be a lot more subtle than that. Humour goes a long way 😉

    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! 🙂

    5 Quirks of Having a Rare Disease

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

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

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

    2. You become an expert in your condition.

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

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

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

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

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

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

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

     

     

    What I Learnt From Modern Family

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

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

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

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

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

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

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