ACTH Test Results

A few people have been asking if I have the test results back since I banged on about it so much (lol), which I do! I had to go to my GP nurse for an asthma review but got a letter front my endocrinologist bringing my appointment early from late March to early January the same morning, so knew something had shown up as a ‘needs to be dealt with urgently’. So I persuaded her to look up the results while I was there!

She didn’t know what they meant so I explained adrenal insufficiency and the ins and the outs. Basically my ACTH level came back as ‘untraceable’.

Briefly, like I explained to her, ACTH is the boss hormone that comes from the pituitary gland. It pulses at various points in the day so it’s not a steady stream of hormone, but there will be some floating around in your system all of the time. It’s highest in the morning. ACTH is what tells the adrenal glands to make cortisol, controls your thyroid, manages other hormones like growth hormone… it does a lot. Once these glands have got enough ACTH to do their thing, it feeds back to the pituitary gland and says ‘enough now’.

The nurse had a little bit of a panic when I explained to her the role of cortisol. You don’t die from having low ACTH, but you do die from not having enough cortisol which is stimulated by ACTH. We already know I don’t make cortisol, so the life threatening consequences of not having ACTH are dealt with. But the nurse was pretty worried, so there was a bizarre 5 minutes where I was soothing her and explaining that as I’d had this probably for 3 years anyway, another 3 weeks until I see the endo wouldn’t be harmful.

She was also confused because I was actually quite pleased with this result. There’s a reason for me still feeling to shocking!! And blood work means there might (and I say this hesitantly) be some treatment options. Obviously I need to wait and see what my endo says because he’s the expert, but I know a bit from the last 3 years of research.

Essentially, I have a pituitary problem because I don’t produce ACTH. However now we need to work out if the whole pituitary has shut down or just ACTH production. There are a few potential scenarios:

– I have no hormones coming from my pituitary and have hypopituitarism. This is another rare illness and would put me in the secondary adrenal insufficiency category.

– some of my pituitary hormones work and some don’t. So we’d need to work out which ones.

– my other pituitary hormones work and my ACTH doesn’t. Having been on steroids for cortisol replacement, my pituitary might have decided it doesn’t need to make ACTH anymore and stopped production. The only way to convince it to start again would be to stop steroids. But then I’d die. So my pituitary isn’t going to make ACTH again by itself either way.

You’d think I’d want only one of my hormones to not work and the rest of the gland to work fine. That works for most medical problems, but actually, things would work a lot easier for me if the whole gland didn’t work anymore. While bits of my Endocrine system still work, my body is constantly fighting itself to try and right itself and adding in hormones with tablets is never going to get the balance just right. So the tablets confuse the glands and the hormones even though I need take them to survive. It’s a bit like trying to push together 2 repelling magnets- they push against each other and try to right themselves but while you’re pushing them, they’re never going to attract.

It’s said that someone with an Endocrine disorder which is uncontrolled like mine has the same amount of hormones zipping around as a woman in active labor. Feeling that out of control all the time isn’t pleasant, so if there’s anything that someone can help me with to make me feel less unbalanced, it’s something to be excited about. Never mind if there’s anything that can be done to alleviate my physical symptoms!

So I got bad test results but it came as a bit of a relief really. I’d been feeling terrible anyway, but now there’s a blood result backing up how sick I feel and also says that I was right to keep insisting they test me for it for 3 years!

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Christmas Concert & a Trip to A&e

I used to love concert days as a teacher. They were usually pretty stressful, but what Concert day isn’t stressful somehow? I liked the busy-ness, the challenge of it, seeing the months of work coming together, kids being proud of themselves… concert days is one of the reasons I became a music teacher.

Concert days look a bit different now. In fact, I don’t really do them because I can’t play or sing anymore. I limit myself to one a year, where I do the sound desk for my husband’s choir he’s part of. And even then I have people doing all of the manual or even remotely physical stuff eg walking backwards and forwards, moving things. I must look really lazy to anyone who doesn’t know what’s going on, particularly when I ask someone to walk over and move something which I’m already standing next to! Every bit of cumulative activity counts towards lowering cortisol unnecessarily. But I like doing it.

My energy- cortisol – comes from my medication. I don’t make any myself, and everyone needs cortisol to survive. Cortisol is your stress hormone. Hence why stressful concert days don’t go down well with me, even though I really like doing them! Usually I take medication 3 times a day. To even remotely manage the Concert day the other day, this was my dosing schedule:

Which meant a 3am wake up for some meds, and contingency built in brackets in case I was really struggling. Which I needed. It also meant my phone being on loud with alarms, despite me telling the choir they couldn’t do this- again, another hypocritical move!

Like with any Concert day, things don’t go to plan. People were late, some equipment didn’t work, I had to shout a couple of times (really screws me up), the sound desk decided to get a software fault which I couldn’t fix so had to botch some stuff together last minute, we sound checked without the projector being on because it was causing feedback into a mic but someone then decided to ignore this and turn it on early for the concert anyway, someone moved all my channels to zero in the interval so I had to hastily try and reset it… Things happen. Most people’s bodies make cortisol to get them over the stress. Mine doesn’t. I couldn’t include all these unpredictable, cumulative stressors into my schedule though and that was a lot extra to deal with.

I’d already been ill before the concert started but I’m stubborn. I miss music and my teaching job and doing concerts. I didn’t want to let anyone down. And I’d felt worse before and done more so I was just ‘getting on with it’. Except there are a couple of non-negotiables which come with adrenal insufficiency and one of those is vomiting. I haven’t been sick since I was diagnosed so I don’t know what my tolerance to it is. So when I was nearly sick in the middle of the 12 days of Christmas, I knew I was done for the night.

Thank goodness it’s a long song! I think I got to about the 4th day of Christmas when I left the desk. Before the song ended, me and my nurse friend managed to have a conversation about how it was weird for me to be sick, whether or not I should go to hospital, find someone to take me to hospital, find a car, tell my husband what was going on and also draw up and give me my emergency injection. That’s pretty good going!

My husband couldn’t take me because me and him were the only ones who knew exactly what sound equipment we had there and he was the one with a borrowed car to transport it. So me and my very pregnant friend headed off to hospital.

It turned out to be a bit of an adventure. 3 other people have the same car as the one we were trying to borrow, so we tried to essentially break into a different car in the car park. Until we realised that the flashing unlock lights were coming from somewhere else. Oops.

Once we’d found the right car, we realised that she hadn’t driven a manual car for 5 years since hers is automatic, and she was also trying to get used to using a clutch again with a bump in the way. It was a good distraction actually since it was pretty funny! Then we realised that most people would assume we’d turned up to hospital because she was in labor rather than for me being ill, so decided to take bets on seeing how often that might come up. It didn’t come up as much as we thought though which was disappointing!

Once we got to a&e it all happened a bit backwards. Actual triage was quite quiet but ambulance triage was horrendous and the trauma alert went off while we were there. I usually get triaged quickly, which happened, and then reviewed by a consultant once in a cubicle, again which happens quite quickly. Except there weren’t any cubicles since half of the patients for ambulance triage were still in ambulances outside. But I did see a consultant at triage which is really unusual. So I was pretty confused and not really with it enough to work out whether I needed to be cannulated yet or not since I’d had the HC IM which is usually why I get cannulated. It’s sometimes difficult for us AI patients to work out if you’re being taken seriously because they understand your condition or not. It turns out that they did understand and a plan was in place. It just was backwards to my usual experience because of what was going on in ambulance triage.

After a few more hours, some blood tests and a chat with a pretty good SHO I was free to go. Hooray! It was put down to having to come off my oral HC for my tests I had the last few weeks messing with my system, and overdoing it for the concert. No infection or underlying cause, which is good. Better to be safe than sorry, but I had to go to a&e anyway because I’d done my injection and that’s standard protocol- you need obs at the very least after having that medication.

After sleeping for 3 days, double dosing and taking it easy I hopefully should be back to my version of ‘normal’ soon. Just 2 weeks of hellish tapering to come though!

Consultants aren’t Gods.

Or at least they shouldn’t act like they are, but some really do.

(Note I said ‘some’, not all. I have had some brilliant consultants but, sadly, they’re not the ones I’m writing about here. I’ll big them up another day!)

Some consultants have been in their post so long, they’re blinkered. They don’t deal with patients as much as the other doctors, and they kind of swoop around the place like Severus Snape from Harry Potter, saying cutting remarks (again like Snape) and scaring half the junior Doctors witless, and not really explaining things properly- to either patients or junior Doctors. They assume that all patients lie, that we also become deaf when they try to make a teaching point to their junior Doctors, and can’t be bothered to be tactful (eg saying it’s my own fault I’m overweight when it’s not) and have very little idea how to deliver news in a way that’s easy for us to process ie ‘you have X life threatening illness by the way, my minion/junior doctor will explain it to you, goodbye’ in the best weakest link presenter voice. In fact, they may as well be done with it and say ‘exterminate’ and point a dalek seeing-eye-telescope thing and blow us up for the amount of empathy some consultants show. And this is meant to be a caring profession?

You can tell which ones these consultants are because when you ask a junior doctor to check with their consultant, they look like a rabbit in headlights. They really don’t want to ask a question. Which is just bad mentorship really. They’re also usually the ones who make nurses or HCAs bring them their notes rather than going and getting them themselves and insist on everyone calling them doctor. Don’t tell me ‘it’s because they’re busy saving lives’ or ‘it’s a mark of respect’ because, actually, I’ve seen some of the highest consultants in their fields and they manage to get their own notes and encourage staff to use their first names. And are nice to other people! Some consultants, to be frank (and rude), are just knobs. And you get knobs in any sector or line of work.

And this makes our lives as patients stressful. I don’t expect my consultant to be like a care bear and all hugs and rainbows, but I do expect them to be caring and care about me. Not just my blood work or chart. These consultants refuse to admit there’s a possibility that they’re wrong or they haven’t seen something before. If it doesn’t fit in with what the know, clearly the patient is lying.

This little rant comes about because I’ve had a few bad consultants. And this week I’m feeling particularly grouchy about it.

Last week I did an acth test to see what my level was. I’ve been asking Doctors to do this for about 3 years, but my very first endocrinologist decided that all of my symptoms were in my head and that I didn’t need the test. And then wrote that in a Clinic letter.

Pituitary related humour- actually it turns out he was right. The problem is in my head because it’s my pituitary. But not the bit of my head he was implying!

So even when I got rid of him and eventually got a really good endo, he didn’t run the test because the first endo said he didn’t think I needed it. 6 endos and 4 hospitals later, my newest endo looked confused and said ‘why has no one done this test? We’ll do it now’. And lo and behold, the test shows that I have untraceable levels of acth in my system. No wonder I feel shocking! But it took 3 years of arguments and pestering to get that result because that First endo made my life miserable.

3 years. If he had listened to me and my symptoms, I could have maybe not felt as crap as I do now. I could have still been in teaching. I might have a family of my own. Maybe I would have died in a dalek attack instead, who knows. It’s not worth speculating about because a) it would make me a very bitter and twisted person but also b) it’s happened now, I can’t change that.

He was pretty experienced in his field. And he had the option of going two ways- listening to me and exploring what I was saying or assuming I was a nut case and refusing to treat me. And he chose the second one.

Now my new, good consultants have gone the first avenue with me and we’re getting somewhere. But his attitude and absolute confidence in the fact that it was all a psychological problem was, and still is, really damaging. When someone tells you something often enough, you start to believe it’s true. Particularly if that person is a senior doctor and you’ve just been diagnosed with something you don’t know much about. It’s still a problem. I get really defensive if I think I’m not being listened to. I don’t easily trust people when they say I’m fine in a&e because when there was actually something seriously wrong, people didn’t listen. I’m trying to fix it, but it’s stupid that I developed the problem in the first place just because I didn’t fit the norms of the textbook.

That consultant isn’t alone in his treatment of me though. Consultants aren’t gods and some of them need to stop acting like it. It’s good to have experts in medicine, but experts still need to be prepared to learn and to remember that without patients, they wouldn’t have a job. So they should listen to us. They’re humans. Humans are allowed to make mistakes because it’s how we learn. I’m going to (try to) choose to believe that these consultants made mistakes in their treatment of me because they’re human, and hope that because they’re human, they’ll have learnt something from having treated me.

A rant about disabled parking

It’s really annoying when people park in disabled spaces when they don’t have a badge. Fast food places are particularly bad at telling their drive thru customers to park in the disabled spaces when they run out of waiting bays. Or private establishments often tell their visiting clients to park in the disabled bays when they run out of marked bays. Most of the time it’s because people just say ‘I was only popping in for a second’ so park in the disabled space because it’s closer. It’s annoying because while it might only be an extra minute’s walk for an able bodied person from a normal space, it can mean a hell of a lot more problems for someone who needs the disabled space.

Anyway, that’s not my rant today. My rant is to do with parent and child spaces. Today there were no disabled spaces available where I needed to go, some cars didn’t have a badge displayed so shouldn’t have been parking in the disabled bays, so we parked in a parent and child bay and displayed the disabled badge.

This, by the way, is a perfectly legal and legitimate thing for me to do. Having a disabled badge means I can park on double yellow lines, in any parking bay except for taxi ranks and bus stops- basically pretty much anywhere as long as it’s not a red way, an obstruction or within specific loading times. So if there are no disabled bays, it’s perfectly fine for me to park in a parent and child space and display my badge.

Except as we went to get back in the car, the parent and child parked car next to us were clearly not happy that we’d parked there. There is no obligation for people to provide parent and child spaces. But there is for disabled spaces. Having a child friendly space is highly useful, makes parents’ lives easier and gives extra room not found in other spaces. But having a child is not a disability, you can work out ways to accommodate your child into normal spaces or you could even choose to leave your child at home while out shopping. Disabled people can’t manage the extra distance from the further away spaces and definitely can’t leave their disabilities at home.

So yes, I’m probably going to sound controversial and spark a debate about parent and child spaces. But between getting glared at and comments for parking in disabled bays because I ‘don’t look disabled’ or getting glared at and comments for parking in a child and parent bay because I don’t have a child, despite displaying my badge and it being 100% within my rights to do both, it’s getting a bit wearing. I agree, it’s annoying when people park in parent and child spaces too, when they don’t have children, but having been disabled and also had to get small children out of a car before I was disabled, I can tell you now, it’s far easier dealing with 2 small children in a normal space than it is managing my disability from a normal space.

Thanksgiving

I’m not American so don’t celebrate thanksgiving, but I’m the type of person who tries to make the best of what I’ve got. So it’s important to take a step back regularly and be thankful or grateful for things.

I’ve been a bit grumpy the last few days because I had hospital tests, had to get stabbed a lot for blood tests, had to fast, I’m still dealing with the crappy side effects of the tests and then the main test got messed up and I have to do it again anyway.

But, despite all my illness quirks and a lot of ‘that’s not supposed to happen’ comments from the people treating me, my body is still going *touch wood*. How clever is that? Despite it being really messed up, it’s still managing to do whatever it is it does which means I still function as a human.

But really, our bodies are so clever! We go to sleep and our heart keeps beating and our lungs keep moving oxygen. We repair injuries and our hair grows and we digest food. All while we’re unconscious! How clever is that?!

Our bodies wake us up or something isn’t right, like a sixth sense. Parents often wake up when something is wrong with their children even if they haven’t made a sound because they just ‘know’ something is wrong. Amazing. And, while we’re at it, isn’t medicine incredible? People have operations where other organs are transplanted into them and they get a new lease of life. I swallow 43 tablets a day and somehow some very clever people managed to work out how to make the medicine in the first place and also how it makes the body function better. We’ve got machines which can spot tumours and problems even if if they’re really minute. Thinking about all my blood tests this week, someone can look at my blood and work out a whole bunch of things from what my cortisol is doing to whether I’ve got infection markers. All very clever stuff.So yes, a bit of a bad week, but still lots of things to be grateful and thankful for. And that’s just two random things relating to chronic illness, there are obviously so many more things which are great!

Third Time Lucky?

I’m pretty grumpy. I did my ACTH test yesterday, which involves coming off steroids for half a day before and I got a letter today saying that the test was void because the phlebotomist didn’t put the blood in the right coloured tube, so it went to the wrong place and can’t be analysed.

I’m a reasonable person and get that human error happens. But considering this illness can kill me pretty easily even when I’m taking my drugs, the fact that I have to come off them to do the test has the potential to make me seriously ill. This will be the third time I’ll be taking the test, and I also did the same test two more times a few years ago. These three times it’s been messed up because of hospital error, the two times before that the NHS didn’t want to do the test because they didn’t think the results would be ‘relevant’ (down to money). Except after a lot of debating, I saw a new endocrinologist who immediately said ‘why haven’t they done the ACTH test?’ and ordered it. So the NHS was trying to save money, but now I’ll have done the test five times? Go figure…

It also has a big knock on effect when tests get messed up and have to be repeated, which I don’t think HCPs recognise fully, as when we’re not physically in front of them, we’re just a number in the system. And when we are physically in front of them and have a melt down because there’s all of this going on in the background, I think they find it hard to empathise and think we’re being over dramatic. Mistakes happen, and that’s fine. But when taking the tests relies on a bunch of things, it has a chain reaction:

  • I have to wait until I’m next healthy to do it. It took me 7 months to be well enough to able to do that test yesterday. I really hope it doesn’t take another 7 months…
  • It has the potential to delay other appointments, like consultant ones. Thankfully I’ve got a bit of time before I next see my consultant, but it could quite easily have meant I would have to wait another 3-4 months.
  • It delays other appointments in other departments. If you’re a complex case like I am, you get seen by many different people, with a lot of ‘wait until we get the results back from X before Y happens’. Trying to schedule all those appointments and tests in the right order is bloody hard work. And involves a lot of waiting.
  • There’s absolutely no point in me going to my GP to help with my symptoms because she’ll just say ‘wait until you’ve seen your endo’ and I can’t see him until I’ve had the results of this test. In the meantime, I’ve been surviving on 3-4 hours sleep a night for about 4 years, have a weird heart rhythm, pins and needles and migraines which have all appeared since I last saw my endo, and I’ve no idea if they’re because of my existing illnesses or if I’ve got something new. But she can’t refer me to another consultant e.g cardiologist, because my weird heart rhythm could be because my ACTH is playing up.

That’s just the reactions within the NHS and my treatment. I’ve been doing tests and been in limbo for over 3 years now. With no end date. I read a blog post about cancer patients and how they feel ‘stuck’ while having treatment because people are either waiting for them to get better or to die. Which is kind of where I am- I’ve got this illness for life, but the impact on my life depends an awful lot on big tests, like the one yesterday. If my pituitary has a short circuit, there might be a treatment I’m currently not on. If my thyroid is broken, then, again, there might be something that will help. There might not be, and I might feel this shocking forever, but at least then I’d know and be able to make plans in the same way everyone does when circumstances limit them. At the moment I’ve just got lots of unanswered questions which pop into my brain when I’m low cortisol and can’t sleep:

  • Am I going to be able to have any kind of job again?
  • Will I be able to have a family?
  • Will I be able to travel to places I want to visit?
  • Can I drive again and get some of my independence back?
  • Will I be able to move to a different place in the country? At the moment, all my treatment is based here, and if I move to a different county, I’d have to start from the beginning again and there’s not chance in hell I’m repeating 3-4 years of tests.
  • If Brexit makes the NHS privatised how the hell am I going to afford treatment?
  • How are we going to afford things like christmas and birthdays and trips to visit people?

etc etc

And, also, hormone glands don’t just fail overnight (in this case anyway). So there’s always a small part of me that thinks ‘if I had made them listen sooner then maybe we could have prevented this from happening’. The longer I’m not on the right treatment, the more chance there is of other circuits in the endocrine system breaking.

It makes applying for financial support difficult when I keep having to say ‘I’ll know more once I complete the test’. I’ve already said many times about the last hospital error and how I had to fight for my thyroid to be checked- they’re not going to believe me when I say the hospital screwed up again, even though it is the truth.

None of this is very good for my mental health. The nature of this illness is that people tend to think because they haven’t heard of it, it isn’t as life threatening as I make out. After a few incidences where doctors nearly killed me and I survived by sheer fluke, it makes me not trust medics very easily. The hospital messing up the blood tests twice isn’t really helping with that paranoia. Now when I repeat the test again, I’ll not only be stressed about having to fast and withhold drugs and trying not to die, but I’ll also be anxious that they’ll mess it up again. Stopping my steroids is bad for my mental health too- it makes you paranoid, anxious, obsessive, depressed, and the feeling like that lasts for a couple of weeks after the test until your system rights itself fully. Then add in all the things I have to worry about which would make me feel like that anyway, I feel like a ticking time bomb. After 3 years, I’d quite like to have some of my life where I don’t feel like I;m just surviving day to day and I’m actually living.

Human error happens. It’s one of those things. It wasn’t the pathologist’s fault, who I spoke to today, so shouting at him wouldn’t have helped at all. So I didn’t, I thanked him for his apology and asked him to give me very detailed instructions to tell the phlebotomists so it can’t happen again. I’m not even annoyed at the phlebotomist, she probably thought she did it right. But the effort of having to not get upset about it, then having to ring and sort out the problem and trying to work out logistics the day after I stopped my steroids made me feel really terrible and run low on cortisol. But I don’t want to stress dose because then I can’t do the test again!! What I’d like HCPs to realise is that while they might think that any setbacks are pretty minor, when you add them all together and look at what a patient is dealing with as a big picture rather than individual brush strokes, there’s a lot individual HCPs could do better to support patients when things go wrong.

ACTH Test Complete :)

I did my day curve test yesterday and they booked me in for my repeat ACTH test for this morning. I already did this test when I had to repeat my synacthen in June but the hospital didn’t flash freeze and blue light the blood in the 30 minute time limit so they couldn’t read the ACTH. Which was very annoying. But at least they didn’t make me repeat the synacthen test again.

ACTH is a hormone released by the pituitary gland, which tells the adrenal glands to make cortisol. We know my adrenals don’t make cortisol on their own, but we don’t know whether it’s just because the adrenal glands are broken or if it’s because the message from the pituitary isn’t getting through to tell it. If there’s lots of ACTH in my blood, it means my adrenals are broken but my pituitary has some function (primary adrenal insufficiency). If there’s not very much ACTH in my system it means that my pituitary has a short circuit in it (secondary adrenal insufficiency).

From the results from my synacthen, where they measure how much cortisol your adrenals make after you’re given a synthetic version of ACTH, we’re assuming that my adrenals are pretty useless because they didn’t do much after the ACTH was injected into me. It was a pretty flatline result. But we don’t know much about my pituitary.

The test itself is easy. It’s just a blood test and it took me longer to walk to the department than it did to actually do the test. However, you have to do very specific prep for it, which is why it’s been really hard for me to complete until now:

1. You need to be on your baseline of steroids for 10 days prior. I’ve been ill a lot so stress dosing a lot.

2. You need to stop your steroid meds (anything with steroid in, not just tablets, so inhalers or sprays too) at least from the night before. NB if you’re doing a synacthen or stim test it might be longer.

3. You have to be ‘well’ for the test. So no illness, temperature, emotional or stressful problems.

4. You can’t do it after you’ve come off a night shift because it needs to be done when you wake up. Not a problem for me but worth me saying.

5. It has to be done first thing in the morning.

6. You might have to fast for it. The doctor didn’t actually tick either of the fasting/non fasting boxes, so I fasted just in case from midnight the night before. It depends on your endo

7. The sample has to be flash frozen and blue lighted to a central lab so you need to be at a place where this can actually be done. E.g. Doctor surgeries can’t flash freeze samples

The hardest bit is the not taking steroids bit. I only really missed 5mg because I took my morning dose immediately after the test, but the thing about the doses is that timing is key. It’s really hard to play catch up on your symptoms rather than treating them preemptively. It’s a bit like waiting until a shark has almost ripped your leg off before intervening- you’ll be having trouble with it for a long time afterwards whereas you’d recover quicker if you’d got rid of him sooner. So it wasn’t fun, I’ve felt truly shocking this afternoon and I don’t feel overly Spritely now. I’ve had a bit more hydrocortisone than usual today and shall take it easy the next few days.

There isn’t much difference in my current treatment if there is a problem with my pituitary gland, because I already have the life threatening illness bit and am on treatment. But it might lead my docs to test other hormones made by the pituitary like growth hormone, or to do a deeper analysis of my thyroid function, which might help alleviate some symptoms.

I’m just happy I got the tests done yesterday and today. I’ve got a few more blood tests to do this week, something to do with cholesterol and my liver (which, surprise surprise is somehow linked to cortisol), but they can be done locally rather than at the hospital.

I’m Finally Doing My Day Curve Test

Today I’m in hospital doing a day curve test. A cortisol day curve test shows how much cortisol is in your blood at different times of day. I’ve had the test once before, when I was first diagnosed where they wanted to check I wasn’t having too much cortisol in my system, so the test was done immediately after my tablet times. This time they’re testing to see what my cortisol level is right before my next dose, so how much fuel is left in my tank before I top it up, basically. My endocrinologist ordered this test in march/April, but I’ve not been well enough to do it until now- you have to be on your baseline dose for 10 days before doing the test and I haven’t been consistently on it for that long since march.

This is hopefully going to be useful because I feel pretty terrible about an hour before my next dose is due. So it feels like my cortisol drops out of my system quickly and then I struggle a lot. But I don’t know this for sure, which is why we’re doing the test.

It’s pretty easy as far as tests go. I have to turn up to the phlebotomy part of the hospital at 12.15 and 16.30 (the latest the department is open) and they’ll take my blood. And that’s it! The hardest thing was potentially getting the importance of the times across to the staff- it has to be done before my tablets but my tablets also have to be on time. So if there are any delays because the clinic is busy it could cause a problem. Thankfully the receptionist was on the ball and, when I went back to the desk to ask how late they were running, she’d already pushed me to the top of the list and said she’d been keeping an eye out for me.

The rest of the time, I’m free to do what I like in between. If I lived closer I could go home because they’re not cannulating me today. I’ve brought some crochet to do so I’ll probably hang out in the cafe for most of the day. However, the test needs to show my cortisol level on a ‘normal’ day. So I need to be doing activities I would usually do e.g. Walking around a bit. Otherwise the results would show what I feel like when I sit down but not actually able to do anything. That’s like filling your car up thinking you’re driving for miles but then only driving down the road- you’d obviously have loads of fuel left over. It doesn’t mean you never use the fuel, it just means you didn’t use it at that specific time. So you really wouldn’t want someone to come along and say ‘you need half the amount of fuel to run your car’ because then you’d only ever be able to drive to the corner shop and never a long drive.

I’ve done my first test, had my usual lunch of soup and am currently people watching all the staff who’ve just come in for lunch. It’s pretty interesting eavesdropping!

‘I couldn’t have asked for better care’

I like the NHS. It’s free and it keeps me alive. Not all my treatment is available on the NHS for free, but the main bulk of it is. However, I would say that overall, the majority of my care is ‘average’. Sometimes it’s exceptional, sometimes it’s shocking, but on the whole, people treat me in the way I’d expect to be treated. I spend a lot of time hanging around in waiting rooms of various different treatment centres, so I overhear a lot. I find comments like this interesting:

– I couldn’t have asked for better care

– the staff were amazing

– they went the extra mile

Sometimes, the person saying it has received exceptional care and the comment is justified. But in a lot of cases, it’s become one of those phrases that you say about the NHS even if it isn’t strictly true because people have heard other people refer to the NHS in that way. So it’s kind of become an expected comment. Especially if people don’t have many interactions with the service. While eavesdropping recently, I’ve heard people say those phrases in relation to:

– being able to book a flu jab for the next day rather than having to wait 2 weeks

– because the doctor introduced himself

– after having had their wrist plastered

– because someone was polite

Those aren’t examples of extraordinary care. That’s what the standard of care should be. Even worse, I’ve heard people refer to being exceptionally cared for because:

– they were given a warm sponge bath rather than freezing cold water which is what they’d had the day before

– they were given their insulin at the same time as their meal rather than having to wait half an hour by which point their dinner was cold

– someone took the time to explain their procedure to them rather than just doing the bare minimum of the job and not interacting with the patient

– the nurses talked to them during obs times rather than just picking up their limbs and not interacting

– receptionists smile and make eye contact rather than just looking at their screen and vaguely talking in your direction

Again, that’s what people *should* be doing. It doesn’t deserve the phrase ‘I couldn’t have asked for better care’. Like I’d say to student teachers, you might have delivered an outstanding lesson but you can always think of a different approach for the next time because there’s always something you could have done better when you’re dealing with humans. So I started asking a couple of people what makes them say that, questions like:

– did your buzzer get answered and did you get pain relief in a reasonable time?

– did you get your obs done regularly? (I’ve had mine filled in on my chart and no one actually come and take them a couple of times)

– did you feel like you were able to make an informed decision about your care?

I was surprised that a lot of people answered no. Which means their care could have been better.

So why do we say ‘couldn’t have asked for better care’ when actually, we could have had better care? It boils down to the fact that the people who work for the NHS tend to be overworked, underpaid and overstretched. Meaning, instead of making complaints about having to wait an hour for pain relief, people are more likely to give them a free pass and say it’s because they’re overworked. Which is true, but it kind of becomes a self fulfilling prophecy; we, and the overworked staff, want things to change, but because we don’t complain about it, there aren’t as many ‘black marks’, which means the (foolish) government we have continue to make very stupid decisions about how the NHS should be run. I’m not saying that everyone complaining would fix the problem, but it would make it very difficult for the government to ignore, not to mention piss them off, if there were hundreds of complaints in the system about level of care which could be avoided with improved staffing or extra funding.

I spend a lot of time with HCPs, so here are some examples of extraordinary care where the staff did go ‘above and beyond’ for me. Because brilliant care does exist, and it’s important to recognise it:

– a senior fellow spent about an hour and a half tracking down and talking to my (also very senior) endocrinologist to get the best treatment plan for me after being admitted to the assessment unit. This meant I actually had a treatment plan appropriate for me and not some vague fabricated one or just being told to apply sick day rules (which is expected advice). They’re both very busy people and I wasn’t actually supposed to be on their patient load that day, so I really appreciated the time they took to help me, and it helped me recover far quicker than normal

– my gp has spent 2 hours of her admin time (i.e. She’s not supposed to see patients) on a couple of occasions, giving me an extra long appointment to give me the best advice

– a paramedic risked a lot by arguing to support me when his colleague disagreed that I needed hospital prior to diagnosis. There weren’t any obvious clinical reasons for me to have called an ambulance that they could assess, I’d rung because I had a really bad feeling, the paramedic had treated me before so knew I was genuine, and if he’d stuck to the rule book, I’d be dead right now.

– doctors who immediately say ‘I don’t know what this is, teach me’. I think it takes a lot of balls to be confident enough to say that in the current culture of medicine.

– a nurse who worked out I needed the toilet roughly every 20 minutes when I was in a&e but couldn’t walk, so just started appearing with the commode, despite being overworked, underpaid and overstretched

– the nurse in charge making a point of coming to see me to apologise that it was a noisy ward full of old people and I was the youngest there. She couldn’t do anything at all to make it quieter and less stressful for me, but she said she’d help me get as good quality of sleep as she possibly could.

Extraordinary care does exist but it’s very much dependent on the good will and integrity of individual staff members rather than the system as a whole. For example, School is free to attend, teachers are also overworked, but it wouldn’t be acceptable if the teacher ignored one child all day and didn’t get round to marking their book because they were busy dealing with more problematic pupils. So why do people put up with it when it comes to NHS care?

Sometimes, people genuinely couldn’t ask for better care. But I think it’s important to make the distinction between someone doing their job adequately in difficult circumstances and actually receiving amazing care. It also is a little bit rude to the people who always give very good care if they’re lumped with people who just do what’s expected of them!

Crocheting Blankets

Weirdly, I love crocheting big projects like blankets but hate knitting similar things like scarves. Knitting isn’t as quick and takes a lot more wool to get a similar length, or maybe it’s because most long knitted things don’t have enough variation in the pattern of each row, I don’t know. But I really enjoy crocheting blankets.

Most beginner crocheters start with granny squares which can be turned into a blanket or go ahead with a blanket itself. I didn’t because I wanted to make animals for my other blog, Out With Animals. So it’s actually taken me until this current blanket to be able to feel like I can do it without having to rip out loads when I’ve gone wrong in the pattern.

I always planned to make my niece a blanket for when she was born, but then she arrived 11 weeks early so I had to get a wiggle on quicker than I thought I needed to! I made her this granny stripe blanket from Attic 24’s pattern:

I chose pinks, purples, greens and blues because I didn’t want to just assume she’d be a girly girl and like pink. As it turns out, she does seem to like pink a lot! I didn’t do it in a regular repeating pattern because I wanted it to look a bit random.

It was a pretty steep learning curve doing it though. I realised I hadn’t really learnt how to chain properly, since most animals are made of circular shapes so I got very good at magic circles, but had no idea how to chain. So doing the foundation chain was interesting! I also kept adding or losing stitches at the end of rows, mostly because I didn’t really know what a stitch looked like properly- again, it’s easier to see the stitches when making animals. And far less to count! I fixed this by using stitch markers (well, safety pins) to help keep track.

The most ridiculous thing I did when making this was to get the foundation end and the bit I was working on end mixed up when I came back to it after putting it down, because they both were pink at this point. So instead of ripping out the pink bit I’d just worked but added lots of stitches to by accident, I actually ended up pulling out the foundation chain. Which is a massive problem because then everything just unravels! I didn’t actually realise I’d done it until I started working on my next blanket, so goodness knows how I managed to fix it! I remember being really confused, but since I used to make pretty big errors knitting, I threaded the stitches to secure them with a piece of pink wool and then carried on working. You can only see where I did it if you really look hard or know where it is, so I’m happy with that in the end. Plus my niece doesn’t seem to mind!

It’s pretty big for a baby blanket, especially as she’s particularly tiny so I’ll probably make it smaller if I make another baby blanket. It took me a week to make.

The next blanket I did was also by Attic 24 called the neat wave (I think anyway). I spend a lot of days on the sofa under a blanket so decided that I’d mind less about being ill if I had a nice colourful blanket. I picked the colours because we have a striped chair in the living room with similar ones. And this time I followed a colour order, because the wave pattern makes more sense if the colours repeat regularly too. Again, I wasn’t very good at chaining and the pattern took a bit of getting used to. I put stitch markers every 25 stitches along the foundation chain, which also had the added bonus of meaning I couldn’t accidentally rip out the foundation chain! I did a practice swatch first, like the author recommended, so that I could get used to the pattern, but I still found it pretty difficult to work out what the different stitches looked like, so spent a lot of time counting or getting to the end of the row and realising I’d gone wrong. What I learnt from this blanket is that a lot of the time when you’ve gone wrong, it’s usually because you’ve made a mistake in the row below but hadn’t noticed until you tried to make the next row of pattern fit.

It’s pretty big but I like being able to fit under it without my feet poking out. I made it in summer though, which meant I couldn’t really work on it during the day because it was too hot with it on my lap! So this one took me about 6 weeks but I made other things at the same time.

My current blanket is also Attic 24 and is a ripple blanket. The pattern is slightly easier but also I now know what the different stitches look like so don’t just have to pull it out to the start of the row, I can actually tell where I’ve made a mistake! And also I know about the error in the row below thing, so check that too. I’m much better at chaining, and, although I seem to have lost one stitch at one end, both edges are currently really straight. I’m only making this one at night time when I can’t sleep, so progress varies on how well I’m sleeping! So far I’ve been doing it for about 2 and a half weeks.

This one is to keep me warm when I go out in the wheelchair over winter. It’s really, really cold sitting because you’re obviously not walking which is what warms most people up. I’m aiming for it to be longer than it is wide, so that I can double it over on my lap or pull it up to my ears if its particularly cold! I picked the colours partly through practical reasons and partly because I just liked them. From a practical view, the blanket is going to be outside so likely to be dropped on the floor or rained on. So dark colours show dirt less!

I like having a blanket to do at night time because the repetitiveness of it helps me switch off. Now that I know what I’m doing and don’t make as many mistakes! Once I’ve finished this one, I shall have to find someone else to make a blanket for!