My week with the NHS: 17th September

Monday

My annual phone reminder told me I needed to renew my red flag with the ambulance service. A red flag means that if I call an ambulance from my address or other named addresses, the dispatcher knows to send an ambulance with hydrocortisone on board, a paramedic rather than a technician who can administer hydrocortisone and, in most cases, that I get a quick call out. They also get some information about me beforehand on their screens. Usually I just email the ambulance service my name, address, date of birth, my steroid dependency and what I take and my GP info, and it gets renewed for another year.

Tuesday

This year, the policy has changed. So the ambulance service emailed back and said that I need my GP or endocrinologist to write or email them. I find this a bit frustrating because I’ve had it set up for 4 years so being asked to provide a note now seems a bit random and a lot of extra faff I don’t need. This is where a nationwide database of health info would be useful… I email my GP and ask if they can sort it out. But the admin staff aren’t very good at email so I’ll probably end up chasing it.

Wednesday

I need some more hydrocortisone so I ring the surgery preparing for a battle. My GP has only recently understood the concept of stress dosing so I spent the first 3 years arguing whenever I wanted any more hydrocortisone. Today it went through without any problems. So she must have updated my file or something.

I’m seeing my endo on Thursday so I sit and photocopy all of the test results I had at a different hospital with the other endo and my most recent discharge sheet. Because my endo is in a different hospital trust, he can’t see anything the other hospital do and vice versa. Which is another reason for a national database…

Thursday

Today was my endo appointment. I’ve already written about the medical stuff in a previous post, so I’ll write about what happens when you go to a consultant appointment, because not everyone sees a consultant. I usually turn up really early because you can never guarantee easy parking at hospitals, I have to have a million rests on the way there and the outpatient department is usually one of the furthest from the main entrance. Sometimes, you go to a specialist department instead eg maternity has its own wing or endocrinology does in the other hospital.

Then you check in either with a receptionist or on touch screens and get directed to a clinic or zone, if it’s an outpatient department. Before you see a doctor, you’ll get weighed, height checked and obs of blood pressure and heart weight done with a health care assistant. Then you go back to the waiting room.

Clinics never run to time. Never. Even if you’re the first appointment, they’ll be late. I don’t know how, but they are! Take a book. Sometimes you can specify if you want to see the consultant rather than one of his/her registrars, sometimes you don’t get a choice. It’s not necessarily a bad thing being assigned to a reg because it can actually mean that you’re not deemed ‘serious’ enough to see the consultant. Like if you’re quite happy with how things are going and the appointment is more of a checking in type. But you can ask the reg to consult with their consultant if you like. Sometimes the regs have different ideas and approaches which work out just as well.

If the doctor you’ve been speaking to goes and gets another doctor without there being any reason for it eg it all seems pretty straight forward, that’s about them, not you. It’s usually their boss checking up on them or making sure they’ve covered everything because they’re new to the department or just generally a newbie. Likewise if there’s other doctors sitting in. Unless they make up part of your team (and you’ll be told who they are if they do), they’re medical students or junior doctors learning. Sometimes they’re asked to take part or look at something, sometimes they just watch and write notes. Depends on how scary they find the consultant!At the end of the appointment, you might be told you need scans or blood tests. Scan appointments come through the post, but you usually get given a blood form at the time if you need blood tests. Sometimes you can do them right away by going to the phlebotomy department walk in at the hospital, sometimes they might be fasting or done after a specific amount of time so you’ll have to make an appointment.

If there’s been any changes to your medications, it’s normal for the consultant to write you a prescription to cover you until his letter arrives with your GP. But you can only get this from the on site hospital pharmacy, not elsewhere. There’s usually a long wait for this too.

You’ll also be told how many weeks/months it’ll be before seeing your consultant again, or if you’re being discharged. However, it depends on how long the waiting lists are/how urgent your case is because it’s more a case of ‘3 months or as soon as possible after’. And after you’ve completed any tests, which also have their own waiting lists.

Then you’re free to go!

Friday

My husband picked up my hydrocortisone for me, but the pharmacy only had the alissa brand, which I can’t take in 2.5mg doses because of the way the compound is mixed (that’s the company which says that). It’s not really a problem right now because my endo has me on multiples of 5mg for now but it could be a problem if they keep ordering that brand in.

I saw my endo: adrenal insufficiency vs cushingoid

I had my appointment with my endo this week. I love my endo. He’s pretty much the first endo I’ve had who cares about my quality of life rather than just keeping me alive. Obviously everyone else wanted me alive too, but they kind of just had a ‘well, that’s adrenal insufficiency for you, go away and deal with it’ mentality.

It wasn’t a very cheerful appointment but I also respect and appreciate him saying it how it is. He said a lot of times that I’m ‘so, so complicated’ but at least I’m ‘clever enough to understand’ what he’s telling me, which made me feel slightly better about it! To summarise, in January, I was switched from hydrocortisone to dexamethasone as my daily steroid/cortisol replacement. And I felt a lot better on dex than I did on hydrocortisone.

Dexamethasone is long acting so I took it fewer times in the day and it would cover me for longer. It has a delay as to how it gets released into your system.

Hydrocortisone is quicker released and clears out of your system after 6 hours and I took it more often. So it more closely mimics how cortisol would work in a person who makes cortisol.

Each have their pros and cons, maybe I’ll write a post about that. However, I’ve not had a very good 3 months: I’ve had diarrhoea every day, stomach ache, feeling incredibly sick, high heart rate, high blood pressure, migraines, random pains, a lot of weight gain, 3 stress fractures… there’s probably more but I forget. A few trips to my GP, 3 visits to a&e, an ambulance and 5 days in hospital and still no one could work out what was happening. I suspected it was ‘endocrine-y’ and somehow linked to my high heart rate but I didn’t have a clue either. It wasn’t fitting with what’s normal for me or my experience, which tends to be a bit off piste compared with other patients anyway.

It turns out I developed cushingoid symptoms. To have cushings disease or syndrome means to have excessive amounts of cortisol. It doesn’t kill you directly in the same way adrenal insufficiency does, but it has massive implications on things like your blood pressure, cardiac health, and bone health, amongst other things, which all can kill you if left untreated. So it’s not something you want to have either. I don’t have cushings disease or syndrome, I have adrenal insufficiency, which is a lack of cortisol production. But because I take cortisol replacement and there’s absolutely no way of checking the cortisol level in the blood in real time, because it’s not an exact science, I developed cushingoid symptoms. Meaning I had (still have) a high heart rate, high blood pressure, lots of weight gain, and got stress fractures.

Which is a bit unfair if you think about it. To have both adrenal insufficiency and cushingoid symptoms all at the same time!How does that work? Well, this is where it gets a bit complicated. I’m well aware of the perils of taking too much steroid and the possibility of developing cushingoid symptoms, it’s drilled into us from the word go as patients. However, you don’t tend to have both low cortisol and high cortisol symptoms in the space of a 24 hour period like I was. I was having a lot of diahrrea which causes stress on the body which means you have to take more steroid for the adrenal insufficiency . I wasn’t even stress dosing after every bout, I was leaving it until I got to the ‘almost passing out’ stage purely because I’m super paranoid about taking too much steroid anyway. It turns out it wouldn’t have made much difference because my baseline steroid was all wrong.

Dex was causing me problems because of the time delay. My body never got a break from it overnight where everyone else does- you don’t need a lot of cortisol when you’re asleep. My body wasn’t getting rid of it, so it was sitting there doing nothing and then when I got up the next morning and took my next dose, it was just adding to it. I think that’s actually what gave me the diahrrea, too much cortisol (more on that in another post), but in having the diahrrea, it drained the cortisol fast and gave me low cortisol episodes, which I treated with steroids or ended up in hospital with when it got really bad. Basically it was a a big roller coaster between too much and too little cortisol. I would feel bad about not noticing this, but I spent 5 days in hospital with a lot of doctors who are a lot more clever than me and they couldn’t work it out either, so… Hindsight is a wonderful thing.

Sadly, this means my choices in treatment are potentially die of a heart attack in my 30s while taking dex, despite the fact it let me function better and feel more human. Or have a poor quality of life and take hydrocortisone but still be alive. In fact, I wasn’t really given a choice, I was very firmly told I was going back on hydrocortisone because we need to try to get my body to mimic the natural/circadian rhythm more.

So I’m back on hydrocortisone and have a crazy taper plan for 12 weeks and a slightly different dosing schedule. It’s not going to be a fun 12 weeks and I felt really shocking every day on hydrocortisone. But I’ll (hopefully) still be alive and it’s at least familiar to me since I took it for 3 years before switching to dex, so got used to how it works and what I need to do. I feel most despondent about the fact that half the reason I’m experiencing such big problems is that the treatment options are limited and it’s basically a case of picking the least bad option. But I can’t change that so have to make the most of what I can manage. And I at least feel confident in my endo and the fact that he says I’m doing everything I can to manage it and seem to have a good grasp of what’s going on. Fingers crossed we can reverse some of the cushingoid issues!

Amnesia

I used to have a phenomenal memory. As in, I could quote entire conversations I’d had with people word by word, could tell you what clothes everyone was wearing, the day of the week, what the weather was like… Not a lot got past me. It also meant that I was really good at learning lines and presentations.

Then I got diagnosed with adrenal insufficiency and my memory went from brilliant to very poor. I couldn’t remember words in English to use in conversation, never mind what anyone else said to me. I’d forget how to do really basic tasks or not realise the consequences of something eg if you touch something hot, you will burn yourself. And I struggled to learn anything new because I couldn’t remember the process. It’s a lot like someone who has dementia experiences- anything that I learnt ‘before’ adrenal insufficiency was and still is there somewhere but I have problems accessing it or learning anything new. And I also find it incredibly stressful like someone with dementia might experience.

However, since switching to dex and feeling a bit more with it, I realised how bad my memory was. To the point where I’m actually accessing some of my memories from the time before I switched onto dex. It’s a bit like when I had a seizure. There are still large gaps in my memory in the week leading up to and on the day of having had the seizure that I doubt I’ll ever be able to access, but every now and then and particularly if I’m prompted by someone or something, I sometimes get glimmers of what actually happened. But the weird thing is, they’re clear memories, so I know they actually happened and it’s not just my brain trying to piece together fragments (which also happens but they feel different).

Which I guess is like amnesia. Every now and then, when someone says something or I smell something or hear something, I get a bit of a memory back from before I switched to dex. Which is pretty cool and interesting but also very strange! The only time I’ve found problems with this is when someone tells me something happened, and my memory that has reappeared tells me otherwise. I’d like to think that people I know wouldn’t have manipulated me and my illness when I was feeling ill, but I trust my memory and sometimes things don’t sit right.

I’ve got many tricks up my sleeve for poor memory because I like to give the illusion that I know what’s going on even if I don’t šŸ˜‰ And since recovering some memories, I’ve worked out some new strategies which should help me if I have periods of really poor memory again. The subconscious brain is a really clever thing which we don’t really know an awful lot about. But I’m glad mine is giving me some of what I’ve forgotten back šŸ™‚

The Grass is Always Greener

Spending some more time in hospital and the forced rest period afterwards always leaves me with way too much time to think. And the out of control hormones don’t help. It always makes me evaluate how everything is going in general and I sometimes find myself thinking about what my life could have been like had I not got sick. I don’t tend to sit in this place for very long because it’s depressing and also a waste of energy- daydreaming about what ‘could have been’ isn’t helpful because it won’t change anything. Life is happening now, I can do something about that. But I also wouldn’t be human if I didn’t think ‘what if’ or take a bit of time to almost grieve the things that I had planned out for my life.

Life doesn’t go to plan. If it did, we all would be millionaires doing yoga on a beach at sunrise and never having to work a day in our lives. You can dream about things all you like, but a lot of the time your dreams won’t materialise at all, or at least they won’t in the way you wanted or expected them to. Then you reevaluate and work with what you’ve got. The only sure thing in life is that nothing is permanent. Everything changes. All the time. People who say stupid things like ‘loving life’ either mean they love their life right that second or they’re lying. No one loves their life all the time. And that’s ok.

The grass is always greener when you look at someone else’s life from another perspective. I look at some of my friends who are mums and listen to them moan about their kids and think that I’d happily trade places. But that doesn’t mean they aren’t having a hard time just because I’d quite like to have their life. They might look at me and think I have it great because I don’t go to work and I get to sit around watching Netflix all day, because they’d love some peace and quiet to themselves which they don’t get since they had kids. Or the career woman who has it all- she’s successful and has loads of money. But what she actually wanted was to get married but never found time for dating. Or the girl who got married at 20 because she fell in love and put off going to university and didn’t get the career she wanted because she didn’t have the qualifications.

You can compare yourself to other people as much as you want but it doesn’t change anything. A whole series of choices give us the lives we have right now, whether we’re happy or not with the decision. Sometimes we can do something about it, like go back to college as a mature student or get married in our 50s, but some things just can’t happen because of circumstance, like you can’t decide to have a family in your 50s (in most cases).

It’s very easy to look at someone else and want to punch them in the face for moaning about their seemingly perfect life and situation. No one is seriously content with every factor of their life, and even the happiest of people feel emotions like sadness, anger and loneliness.

My life could have been very different if I hadn’t got sick. But that doesn’t mean that my life isn’t someone else’s ideal. I’m married. I own a house. I have friends. I do lots of charity stuff. To someone who doesn’t have those things, my life might be ‘greener’ than theirs. Sure, I want more. But I should want more from my life because I want it, not because someone else’s grass looks greener than mine.

My week with the NHS: 10th September

This week was *amazingly* quiet. Yay! I still had my normal chiropractor appointments in Tuesday and Friday, but they’re not NHS. The recommended treatment from the NHS for the type of pain I have daily is physio and chiropractic care, which isn’t available widely on the NHS. And I definitely wouldn’t be able to go twice a week. But it really helps manage my pain so I pay privately for it. Anyway, here’s my interaction with the NHS this week:

Monday

After the palaver with the blood form from last week, I went over to the pharmacy to do my blood test the hospital asked for after a week of being at home. It’s quite handy that lots of pharmacies have visiting phlebotomists because it means you don’t have to make a GP appointment, you can usually pick a time and a place that suits you because they have early morning and later slots, and you can usually just walk in as well as making an appointment. As long as you have the form, it’s pretty straight forward. Plus, because they’re phlebotomists rather than healthcare assistants, they stand more chance of getting blood out of me when I’m proving a bit tricky. The only tests you can’t do and need to go to a medical centre for are the ones which need spun or put on ice straight away. But they normally make you do those ones at the surgery anyway.

It turns out the phlebotomist also had a blood form so my GP did send it up after all. My veins were actually cooperating today but I still got a giant bruise from it.

Usually, if there’s a problem with your blood test results, someone rings you or writes to you within 48 hours to tell you to make an appointment or to pick up a prescription. So because I didn’t have a phone call or letter last week, my kidneys are obviously fine since starting my new meds. I knew this anyway, and I’m only on a tiny dose, so the test was just to make doubly sure.

And that was it! It was quite nice not having to do any patient admin or go to lots of appointments this week, I really needed the break. Besides my giant bruise, my week with the NHS was pretty uneventful!

I Bought an Apple Watch

If you know me, you know I don’t spend money on anything without some internal debate. Even if I need to buy it, like shoes or a winter coat. So spending money on something so expensive as an Apple Watch seems like a massive extravagance we don’t need when we only have one income.

However, it’s actually amazing and is really helping me manage my illness better. Which, again, if you know me, I really hate spending money on gadgets. I’ve had it about 3 months now. You have to use it as a tool though, not as a be all and end all- at the end of the day, it’s still got flaws and will malfunction sometimes eg sometimes it says my heart rate is 40 when I’m sitting up and feel fine. Clearly it’s not 40, it’s obviously just where it hasn’t read it properly, which even machines in hospitals do from time to time. It also thinks crocheting is walking. I got a bit of a shock one day when it said I’d ‘walked’ 14km. Turns out I’d just crocheted 14km!

Here’s why I love it so much (I’m not being paid by Apple…)

I don’t need to look at my phone. It’s the same for everyone who has one, you can set up all your notifications for messages, calls, reminders, emails… so that they all appear on your watch.

Medication alarms and apps. I have many alarms set up during the day for when I need to take pills or do certain things. The problem with them being on your phone is that it makes a noise, and sometimes it’s not appropriate eg if you’re in the cinema. The watch can vibrate silently to tell you. It’s also a less stressful way to wake up if you’ve fallen asleep, rather than having your phone singing to you suddenly! The apps that I use on my phone also work on the watch so I can tell it I’ve had my pills as well.

I don’t have to carry my phone around with me. Before, I used to take it to the toilet or between rooms at home, or with me when I went to the toilet when out. It’s because I’ve got ‘stuck’ numerous times when I’ve been separated from it and needed to call for help or an ambulance. I can do it on my watch now, providing my phone is within a certain range. It was also really handy when I was in hospital and couldn’t have my phone with me for a colonoscopy procedure, but could have my watch- I could text my husband and tell him I was still alive when it ended up taking twice as long as it should have done and he got worried.

I can control my phone from my watch. If alarms go off on my phone, I’m listening to music or pod casts or someone messages or rings me, I can do it on my watch without moving. Sounds lazy, but when you’re feeling so terrible that reaching for your phone to skip a track is like a marathon, being able to do it from your watch is a god send. I’ve set my watch and phone so they hand over to each other so any things I do on my phone/watch like turning on do not disturb automatically mirrors on the other device.

You can ping your phone. Now that I can control things from my watch and don’t need my phone in my hand, I put my phone down a lot and lose it. You can ping your phone from your watch so it makes a noise to help you find it. I use this feature a lot!

You get encouragement from others. You can add friends who can see your goals (move, stand and exercise) and when you achieve them for the day or complete a workout. Then they can message back and tell you how awesome (or not!) you are! It’s a simple thing, but it boosts you mentally.

You set goals. Most people use the watch to encourage them to move more. You set your daily goal and then you can see visually with 3 coloured rings how close you are to achieving it. I use it to pace myself. So if my rings are over halfway closed and I’m not halfway through the day yet, I know I need to move or stand less. I spend a lot of my time at home, so you’d think that would be pretty straight forward but because I need to use the toilet regularly and eat a lot, you’d be surprised how many steps I can rack up before 8am some days!

It syncs with my other apps on my phone. So heart rate while doing specific activities, sleep, any meditation I do using the breathe app on the watch, the amount of steps I’ve done and any exercise all sync into my health app on my phone along with the other apps I use on my phone, such as my carb counting/ food app and my blood pressure and blood sugar recordings. Then it summarises everything in graphs for me, which I can then show my doctor. Or use it to work out why I had a particularly good or bad day. All with very little effort since a lot of it is done purely because I’m wearing the watch. It does mean that someone in California who works for Apple probably knows wayyyy too much about me now though!

It tracks my sleep. I don’t sleep well, I know this already. I get up a lot at night and don’t really ever get deep sleep. However, I spent about a year telling my GP that I was having a funny heart rhythm at nighttime and it was stopping me from sleeping and waking me up. She said I was having panic attacks and it was making my heart race. I wore my husband’s Fitbit for a month to show her that my heart got quicker first and then I woke up, rather than a panic attack, and she sent me for a 24 hour cardiac tape. Lo and behold, I have a random heart rhythm overnight, not panic attacks. If I hadn’t worn the Fitbit, I wouldn’t have been able to prove it. The Apple Watch is even more accurate. I’ve also downloaded an app called pillow which shows me the different stages of sleep and compares it with my heart rate and what activities I did during the day. Then it tells me if I slept badly because I overdid it or not, or if it’s to do with my funny heart rhythm. It also gives me a percentage of sleep quality for when I am asleep. If I have a particularly restless night, I know I need to take a nap in the day. Because I feel tired all the time, sometimes it’s hard to tell what I need to be doing to prevent further issues.

It tracks my heart rate. I downloaded an app called heart watch which tracks my heart rate in real time for regular, sedentary, exercise and sleep activities and analyses it for me. I’ve set it up so it buzzes me when my heart rate goes above 100 so I know I need to lie down or stop. Just by using this app, it’s helped me identify some foods which make me tachycardic, that bending down to pick something up makes my heart rate super high and that I likely have some kind of postural heart thing. I tested it against the cardiac monitor I was hooked up to recently while in hospital and it was pretty accurate. And funnily enough one of the doctors also mentioned a postural heart problem! My watch might have diagnosed me first šŸ˜‰ Right now, I know my heart rate is too high for me to have a shower so I’m writing this while lying down waiting for it to settle. Before I wouldn’t have been able to know this and would have made myself feel more ill without knowing why.

It’s waterproof. So I can keep it on in the shower and see how much having a shower has affected me. I can also use it in a swimming pool when I’m doing my physio/exercise programme, although I haven’t been well enough to test this yet. Plus it just means I don’t need to worry when I’m clumsy and get it wet while washing my hands…

It makes things just a bit easier when out. I don’t cope well when out if I have to do things like follow a list and pay. It’s mostly because a lot of my energy is going on staying conscious so I get flustered if I have to hold things and try to complete tasks. Using my watch means I can have my list on it and pay using Apple Pay and it’s attached to me so I can’t drop it or lose it. Before, I used to ask other people to get things or pay for me but it means I can do it now (unless there’s a giant queue but that’s a different problem), which has given me a little bit of my independence back- small things like this matter.

I find preventative measures to managing my illness is easier and better for me than trying to ‘catch up’ once I’ve already got symptoms. And my watch helps me identify a lot of things which help me manage it better which I wouldn’t have otherwise. I don’t use it in place of my gut instincts, and I still manage my illness based on what I feel like, but it definitely has improved my approach to it with very little effort on my part.

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.

I miss teaching

It’s been 3 Septembers now since I stopped teaching. I loved September as a teacher- new timetables, new classes, new ideas. So it’s always a bit weird when September comes back around and I’m not going into school. It’s made weirder by the fact that I never had a ‘this is my last day’ moment because I went from school in an ambulance one day to hospital and then went off sick. And that was it. I never got to close anything off properly, so to try to help with that, I wrote about it last September, about the things I missed about teaching. I didn’t share it on my blog at the time, but I remembered about it this week so thought I’d share it now.

I miss teaching. I miss walking down a corridor and having pupils saying hello or chasing me down to tell me about their weekend.

I miss the kids who wiggled back when I said ‘bell’s gone, let’s get a wiggle on’ on gate or break duty.

I miss the ‘PA kids’ who turned up every day before school, at break, lunch and after school to say hello and tell me about their day.

I miss having to google maths homework or other subject’s homework to help pupils, and the way we’d find it funny I couldn’t do it, so that they could come to after school rehearsals rather than extra maths intervention.

I miss extra-curricular activities. Full stop.

I miss the feeling you get when a kid who lacks confidence suddenly manages to perform in front of others. When you have a hi-five, victory dance, jump up and down or hug to celebrate along with them.

I miss the pride you feel when a pupil performs well, after lessons or weeks of saying ‘good, but you can do better, I know it’ and they eventually ‘get it’ and it’s amazing. How they change from kids to performers.

I miss concert days which are the most stressful things in the world, but you wouldn’t swap them with anything. How someone always has inappropriate clothing, a meltdown, an argument, forgets their words or hasn’t bothered learning them in the first place. How there’s always a moment where you sit and think ‘holy crap, I’m in so much trouble if they don’t pull this off’ but they always do.

I miss kids bringing me sweets because they know they’re my favourite and it’s a choir day.

I miss sixth formers who help out with anything and everything because they love the subject so much even though they don’t study it.

I miss giving the ‘I’ve already got my qualifications certificates hanging on my wall, I don’t need to add yours to my collection- I’ll help you with it but I’m not doing it for you’ speeches.

I miss school trips where the kids are in awe of concert venues or older performers. How they’re moved by live music and want to tell you about it.

I miss disclosures when we’re studying the meaning of words of a piece and how they can affect different people. I obviously wish they hadn’t had the terrible experience in the first place, but I feel privileged they feel safe enough to share it with me.

I miss the running jokes with the older kids, like how I can’t work the iPad so someone always does it for me.

I miss the feelings of ‘fab, they’re all really engaged in this’ mixed with ‘don’t screw it up by saying something stupid’ when a hard class is finally settled and listening.

I miss shouting ‘ I am not a house elf, I am not tidying up your keyboard for you’ at the end of every lesson at least once.

I miss asking for ‘glamorous assistants’ and the boys rising to the challenge brilliantly with humour and style.

I miss mispronouncing some of the names and then the class cheering when I eventually manage the register without any mistakes or grovelling apologies.

I miss hearing kids encourage each other, copying my phrases or my actions.

I miss kids correcting my ‘coolness’. How they roll their eyes at my attempts.

I don’t miss marking, but i do miss when kids write brilliant pieces of work. Or when they make me laugh and despair with some of their more silly answers.

I miss kids emailing me when they’re late for school because they’ve finally listened to my ‘take responsibility for yourself, how could you make the bad situation better’ lectures and know that apologising first won’t fix it but it’ll help.

I miss kids saying ‘I thought what would Mrs M do and then I did that’ when they’re problem solving and are stuck.

I miss worrying if a kid’s ok because they were upset in lesson.

I miss the constant noise of pupils making music all day every day.

I miss the annual game of telling the new year 7s that I can read minds and managing to ‘prove’ it so that they behave in practice rooms.

I miss the new espo order coming in!

I miss late night emails from kids about work, but feeling happy to reply because I know they’re working hard.

There’s more I miss. I miss teaching and knowing I won’t do it ever again is really hard.

My week with the NHS: 27th August part 2

I had a bit of an eventful week last week, so you might want to catch up with part 1 first šŸ˜‰

Thursday

At some point in the middle of the night, someone was supposed to stick a ‘nil by mouth’ sign over my bed so people couldn’t accidentally feed me. But they didn’t so it’s a good job I knew I wasn’t supposed to be eating! I ate a ‘light breakfast’ as per the only nurse who was on in the night who seemed to know what was going on and then was on clear fluids only until my test in the afternoon.

The nurse in charge of my care that day was a bit odd. Most of the people on this ward were old, I was the only young patient by about 50 years so I think she was trying to bond with me by telling me all about her escapades when she was drunk. But she turned out to be a bloody good nurse when she came back and said ‘question- how are you still alive if you’re diabetic and we haven’t been giving you insulin?’ To which I replied ‘I don’t have diabetes, I have diabetes insipidus’ and explained the difference. My chart said diabetes apparently. Not useful! She was the only one who had noticed though.

She also gave pharmacy a bit of a kick up the backside. When you’re admitted to hospital, all your meds are given to you rather than taking your own. Except not very many of mine are automatically stocked on the ward, so they have to be ordered from pharmacy. A pharmacist comes to talk to you and then (in theory) makes sure your meds get sent to the ward for the nurses to dispense. Except half of mine were still missing or they didn’t have any anywhere in the hospital. It’s actually more stressful for me being in hospital trying to keep track of my meds because they change the times of them, some doses get changed and some just never materialise and I end up taking my own anyway (I have a week’s back up in my hospital bag). At home, they’re all in a dossett box so I swallow the contents of the section when my alarm goes off.

A medical doctor (rather than an endo) brought round lots of junior doctors to see me. He was fascinated by my taking dexamethasone rather than hydrocortisone (less common for treatment of AI) so I explained the reasons why. He asked if I had a medical background because I gave a good explanation so I said ‘no, it’s just it’s rare so I decided to read up a lot about it when lots of medics kept trying to kill me by accident because they hadn’t heard of it’. Which made the junior doctors laugh until the consultant said ‘no actually, I think she’s being serious’.

My husband came in so he’d be around for my colonoscopy (with the ADSG surgical guidelines on hand just in case) and tried to reschedule some of my appointments from that week. Even if my endo appointment had been in the same hospital, I wouldn’t have been able to go because the NHS has a silly rule where if you’re an inpatient, you can’t attend outpatient appointments and neither can your consultant pop up to the ward to see you. Then you also usually get a snotty letter telling you how much the NHS had to pay for your appointment you didn’t attend. Unfortunately, you have to spend a lot of time on the phone reorganising things with the various secretaries because if you call the main outpatient helpline who do sort it for you, you get sent straight back to the bottom of the waiting list. Whereas secretaries can force book you into clinic sooner.

My nurse came to do the enema prep at around 12 and said it was a pretty horrible experience and I should prepare myself. Except it really wasn’t, I’d been having worse symptoms daily for 2 months. She kind of raised her eyebrows when she came back and I seemed quite happy and I told her this. Maybe I was just putting up with too much for the average person in the first place! I was relieved she appeared with my IM HC prep as well without me having to check, even if she did tell me in great detail about who she pulled at the Christmas party.

I was given the time slot of between 1-5, so the porters came at some point mid afternoon to take me down to the department. A very nice nurse came to give me the information and get my consent for the procedure and explain the risks. I reiterated my steroid dependency and she said the ward hadn’t told them about it but she would sort it out. Which was bloody annoying because I’d literally been banging on about it non stop! Because of this, it meant I got shifted back a bit while they sorted it out. And then a lady crashed (having the same test as me) and everyone had to go running. It’s always a bit weird when that happens anyway, let alone when you’re having the same test, but I reassured myself that she was about 90 and it’s not a pleasant test so no wonder her heart gave out temporarily.

The nurse was on it and the doctor was holding my IV HC when I got wheeled in, which made me feel so much better! My BP was really high again and I needed help getting changed because I felt rubbish but it didn’t take long and the staff were super clear about what was going on. I declined the opportunity to watch it on the screen! I confused the nurses by having a perfect BP afterwards and suddenly perking up a bit. The doctor laughed and said it was because of the IV steroids, which is true. He decided to take biopsies, just in case, because, to quote him ‘none of us want to have the faff and risks with the hydrocortisone and prep if we don’t need to again’. Very true.

There was a bit of a wait for the porters to collect me and then I was allowed to eat again! The rest of the evening was uneventful really until I was moved really late at night to a different ward. The problem was, I shouldn’t really have stayed on the assessment ward for as long as I did because it’s supposed to be a holding ward until a bed frees up on a specialist ward or you go home. Except there are never any endocrine beds, ever, and no other speciality wanted to ‘claim’ me. I almost went onto a gastro ward, except the colonoscopy was clear so they didn’t want me. So I was transferred to a short stay ward normally for post op patients. This happened at 11pm, which was unsettling anyway but meant that by the time I’d had new patient intake and obs and the doc had been to review me it was almost 1am on a day where all my drugs had been at random times and I hadn’t eaten. It wasn’t a fun night, but at least I was finally off the cardiac monitor!

Friday

The night nurse was great about my steroids. She appeared at 7am on the dot with them and made a point of telling staff at handover that they were highly time critical and they needed to be aware of this. It’s a shame no one listened to her though because I literally spent the whole day arguing with people about the scheduling.

An endo reg came to see me and said I needed to stay overnight again because he wanted me stable on my oral meds rather than my IVs before discharging me. Made sense but I was not impressed. It made me realise how much I withhold or ‘dumb down’ when I speak to other speciality doctors because he started asking me really endo specific questions and told me he was an endo and then we had a much more detailed conversation about what I’d been doing and why. The problem with moving ward is that all of those medications I’d spent the last 2 days sorting out with pharmacy don’t move with me. So the process had to be repeated meaning I was back to missing meds and them not being in stock on the ward. The great night nurse had got IV HC in overnight but the consultant switched me to oral meds, which they now didn’t have.

The day staff also weren’t appreciating the time sensitive nature of the doses, made more time sensitive by the fact that oral meds take time to work whereas IV ones are pretty instant, and the transition from IV to oral results in a jekyl and Hyde like demon response at the best of times, and is pretty much like taking all of the oxygen out of the room and being asked to hold your breath. I had a student nurse as my nurse today and she kept forgetting to pass the message on to her supervisor and wasn’t allowed to dispense meds. Usually I’d go stand at the nurses station and refuse to move until someone gave me them when I got desperate but I was still under quarantine so not allowed to do that. Suffice to say really good night nurse was not happy when she came back on shift.

I got really, really hypertensive (high bp) overnight so I asked the nurse to get the doctor on call to review me because I thought I might need another steroid dose. She asked me what my usual dose was and I told her my dex doses to which she replied that I ‘should be on 4 times that amount’. Which is very wrong! I think she thought I was there post op, where I might need that high a dose for swelling but not routinely on my baseline! I asked her to make sure the doctor actually came to see me because sometimes they don’t want to wake you up and just look at your chart, but I didn’t really want the nurse saying I wanted 4x dex… The doc came about 3am and said they’d review my BP properly in the morning since it had come down a bit.

Saturday

My meds finally arrived from pharmacy but there was mass confusion as to how they were going to give me 2.5mg doses with only 10mg tablets. Welcome to my life! The nhs only issue 10mg tablets, you just have to get good at breaking them evenly. I showed them my tricks.

Even better news, the consultant said I could go home! He started me on a blood pressure tablet and said I needed some repeat bloods in a week with my gp. All of my test results were mostly fine and no one really knew what had happened but maybe my endo would know. I’d kind of stopped listening by now because I was focusing on being able to escape! It’s great I had good test results, but actually it’s not helpful from a diagnostic point of view.

However, from past experience, escaping from hospital is never quick if you need prescriptions or TTOs (to take outs). It takes hours for the discharge note to be written by the doc, for it to get sent to pharmacy, for pharmacy to sort it out, and then for it to be delivered to the ward. It takes twice as long if you’re complex like me because it has to be signed off by a senior pharmacist. I saw the docs at about 11 and we didn’t leave until about 5.30. That’s still pretty quick though!

Sadly, someone died that afternoon on the ward. It’s always a bit odd, even though they were old and on end of life care. It’s also weird the way the staff have to deal with it- someone comes and just closes your curtain so you can’t see what’s going on and then they never open it again so you have no idea if you’re ‘allowed’ to or not. The first time it happened, I just opened it again and got told off because I got an eyeful of the patient being taken away. But if someone had told me what was going on, I wouldn’t have opened it! Considering people die a lot in hospitals, no one seems to deal with death very well…!

On that happy note, that was my rather full on week with the nhs! It was a pretty average experience really. Some pretty rubbish care (but not terrible) and some good care. I particularly liked night nurse Beatrice!

My week with the NHS: 27th August part 1

I had a busy with medical appointments planned, but it all went a bit pear shaped and I ended up in hospital for most of the week. Such is the nature of a volatile illness!

Monday

I had to ring and put a repeat prescription in with my GP. I was pretty annoyed that the receptionist laughed at how many items I had and then jokingly tried to read my list to me as I was reading it out to her. Irritating for many reasons: if she’s laughing at me, she will probably make a mistake; reading it out over me isn’t exactly good for patient confidentiality since she said my name aloud and then read my list; it stresses me out because I can’t cope on the phone anyway and she’s effectively talking over me, and I didn’t need all my repeats, which she wouldn’t know because she was too busy laughing at me.

Tuesday

I went out for lunch with a friend and felt weird beforehand. Nothing specific, just weird. Then I started to get diarrhoea every half an hour in the afternoon, which is classic low cortisol symptom. So I did my blood pressure, temperature, heart rate and blood sugar and they were all fine ish. As a last resort I dipped my urine. I got some testing strips a while ago once I realised that I can basically do everything my GP would do to check for infection at home. Yep, infection. So I needed to see a doctor. My husband helpfully decided to not see the seriousness of this and faffed around rather than coming home earlier and taking me to the walk in, which gave my blood pressure and heart rate the chance to sneak up more.

I went to the walk in because at that point I thought that I could have antibiotics and it would be fine, and my GP was closed. Except the nurse did my obs and my BP was super high and I was tachy, so she sent me to a&e.

I got triaged pretty quickly and given a cubicle. But because I’d come in with diarrhoea I was put under quarantine, even though I was pretty sure it was low cortisol. I was seen by a paramedic who was retraining to work in ED, which was pretty interesting because he had a completely different take on things- he wanted to problem solve and try to understand what was going on rather than relying on bloods and tests and numbers. He ordered the adrenal insufficiency protocol (IV steroids, fluids, bloods) and said he was admitting me because I’d had diarrhoea for 2 months, it had got massively worse in the last 24 hours and I must be pretty unwell by now.

The advantage of being quarantined (or barriered as they call it) is that I had to go in a side room on the medical ward (AMU). AMUs tend to be really noisy, busy places, where people get moved in and out all night. And every time you get admitted to a ward, you have to have obs and new patient intake, which means lots of talking and lights going on and off. Then a medical doctor will come and see you when they’re next free. Basically, if you’re on a bay of 4-6, you don’t get much sleep because of all the coming and going. So a side room was quite welcome even if it’s still a noisy ward. I think the docs came to see me at about 2am, then they sent a gastro doc to me about 4am. I can’t really remember if I’m honest!

I was on 2 hourly obs or something close to it and the nurses were worried about my blood pressure. One of them thought it might be because I needed more food so started force feeding me sandwiches. I’m not usually allowed to eat that many carbs and I don’t think there’s any science behind it, but I took the food anyway! One thing it is worth saying is that being in hospital is the worst place to follow a medical diet- if you’re vegan or halal, you’re covered, but there weren’t any low carb options. So I gave up and surrendered to the hot pudding and custard!

Wednesday

Stupidly, I didn’t take my hospital bag with me the night before because I assumed I was just going to the walk in. So my husband dropped it off before he went to work. An endo came to see me in the morning and flatly told me I was staying a while when I tried to insist on going to my outpatient endo appointment on Thursday. He also put me on IV rather than oral meds and kept the fluids going. Then he said I needed a colonoscopy, which I was not thrilled about. I thought he meant as an outpatient but he meant the next day.

No one wants to have a colonoscopy because it’s not a nice test. It’s pretty undignified and it’s pretty uncomfortable and painful. However, having a colonoscopy and adrenal insufficiency adds to the risk- you have to fast beforehand, then have an enema to empty the contents of your bowels and then have the invasive procedure. All which require special steroid coverage to make sure you don’t die. For all of these things, a ‘normal’ person would make a lot of cortisol to help keep the body in balance. Mine can’t, so without replacing it, I would have an adrenal crisis and my organs would start to fail.

I was a bit freaked out about this because of a few reasons. The consultant (an endo) I spoke to who ordered the test immediately understood what I was saying about steroid coverage and said he’d have it sorted. His shiny new junior doctors (they kept bringing them round to see me any my rare illness) didn’t understand though and when they came back later to try and sort cannula and bloods, they tried to say that I was covered with the IVs (4x 25mg per day) the consultant had written up. The IVs were in place to replace my normal steroid dosing, not the extra I’d need for the procedure (100mg on prep and 100mg at the start of the procedure), and this is what was confusing them. On paper, it looks like a lot of steroids, because it is. But it needs to be like that.

The other reason I was worried was because I was having my usual battle of ‘it’s steroid time and you haven’t brought me them. Yes it does matter if it’s half an hour late. Yes I can actually die if you don’t give me them now’. Problem is, I had no idea what times they’d written in the chart because no one seemed to be following it anyway- once one of them is late, it knocks the others out of sync and then they don’t want to give me the next dose. If it’s my normal schedule, I have a bit more control and my own pills, so if need be I take my own. I can’t give myself IVs. If they couldn’t even give me my charted meds on time, what chance did I stand with something more complex and if I was unconscious? I’d never had anything surgical since my diagnosis, so I had no idea how I’d react.

I had a pretty terrible day with gastric issues anyway and then one of the nurses said she was worried about my heart rate so I needed to go on a cardiac monitor. It’s 3 wires attached to your chest and then attached to a monitor. It beeps when your heart rate goes above a certain amount, then gets more and more insistent the faster it gets. It feeds these beeps back to the nurses station so they can look on their monitor. The beeping is pretty annoying but I got used to it after a while. However, picture having to go to the toilet every 9 seconds complete with IV fluids stand and cardiac monitor. I had to disconnect myself from the monitor every time I needed to go to the toilet, then take my drip with me, and avoid getting tangled when trying to reconnect it all. It wasn’t a fun afternoon.

I’d decided to tell everyone I came across about being steroid dependent because then someone somewhere would ‘get it’. No one seemed to know how long I needed to fast for either. Some people said 12 hours, others 8, others said I could eat breakfast. I was getting pretty wound up by now, although bizarrely this made my heart rate go down rather than up so it was beeping for a different reason. And then my cannula dislodged, tissued and made my arm swell up a lot and I couldn’t bend my arm.

Then a junior doctor had to spend an hour getting another one in, which she failed and a nurse had to do it. All while waiting for my IV HC- my 9pm dose had got ‘moved’ because someone had given me my 2pm dose at 5pm instead and then by the time I did get my dose and the faff with the cannula, it was 11.30pm. The junior doc also left me with a lot of bruises…

I was not happy. My circadian rhythm, your natural body waking and sleeping cycle, or what was left of it, was completely out and I didn’t stand a chance in sleeping- basically like jet lag. And then when I tried, my heart rate would change so the beeping started. Do you know how off putting it is listening to your heart?!

Then to top it all off, the junior doctor came back and said she still didn’t really understand what I needed steroids wise for the following day. So I had to sit and ‘update’ my own chart with her basically at about 1am. At this point, I insisted on sticking my steroid dependent stickers all over my chart.

I think this post is long enough, so the rest of my week will be in part 2!