‘It’s *just* your hormones’

This phrase annoys me two ways and they’re both the polar opposites of each other! It’s a phrase that gets batted around quite a lot as a way to ‘excuse’ women’s behaviour, in particular. But whichever way it’s used, it’s irritating. So it’s now one of the phrases I’d quite like to see eradicated.

Hormones control everything. I don’t think most people realise that all of your systems rely on hormones to make them work. Hormones tell the different bits of body to do things, they’re like messengers. Otherwise your body is just a bunch of post boxes without any mail getting delivered anywhere else. They zip around all day every day, even when you’re asleep. In fact, a lot happens when you’re asleep and you don’t even know it. It’s actually pretty miraculous that we wake up every day because so much has to work in the background while we were counting sheep.

There are some hormones you need to survive. Some you’d die if you didn’t have them- cortisol is one, insulin is another. Not your life would be more miserable or you’d have horrible symptoms. You’d actually die without them pretty fast. Which makes hormones pretty damn important since they’re all linked together. And if one goes a bit haywire, chances are this has a knock on effect on the others. But it’s a bit like spreading gossip or Chinese whispers- the messages get changed slightly as it goes through the system, or things change so that by the time the second message has got through, it’s too late to be effective. Hormones are tricky things.

Which is why I get really mad when someone says ‘it’s just your hormones’. It’s said in two ways:

1. To try to dismiss what you’re feeling.

In the same way saying ‘calm down’ never makes the receiver feel calmer, telling someone ‘it’s just their hormones’ when they’re distressed, or words to that effect is like lighting a match. Particularly if you shout it at them. In fact, if I am having a meltdown, shouting at me is about the worst thing you can do, because it makes the hormone imbalance worse. Someone who has a hormone imbalance isn’t necessarily physically able to produce the hormones that help other people rationalise, keep calm or let go of something. And when you’re feeling really unbalanced hormone-wise, you’re not just having mood swings, or being irritable or tearful, you’re also likely feeling paranoid, guilty, anxious and possibly suicidal. About what? Probably about something minute. But can you get your body to realise that? Not easily- it’s not a mental problem, it’s a chemical problem. So hearing things like ‘get a grip’, ‘just let it go’, ‘calm down’, or it’s ‘just your hormones’ makes you feel even more paranoid, tearful and stressed which adds to the problem. Even if it is something stupid to everyone else, a person with an imbalance can’t get a grip, and telling them so just makes it worse because you know you’re being ‘silly’ and you can’t do a thing about it.

I tend to have meltdowns at home and not in front of other people unless I get caught out. But because it’s not just people like me who will have this problem, pregnant women also have similar imbalances (although they get a bit more of a free pass), here’s what helps me when I’m in a cycle, so maybe it might help some other people.

I will be going round in circles- sorry about that. I’m usually so disorientated by whatever it is that’s stressing me out I won’t remember the start of the cycle so will keep going over it. And it will sound like blithering but it’s important that someone hears my concerns and takes them seriously. It might be stupid. But to me, it’s really not at that point and if you want me to stop having a meltdown, trying to snap me out of it actually takes longer! So listen to me. Write my main worries down or summarise them to me at the end so I can see I’ve been heard and you can repeat to me that we’ve been over it.

Do something that shows me I’m not pissing you off. I will be over sensitive to everything and read things into things which aren’t actually there or are just coincidence. But it’s harder for me to think that if you’ve given me a hug or made me a cup of tea or come and sat next to me.

The worst thing about having had a meltdown is not knowing what to do with myself afterwards. Hormones are working overdrive and it sets the whole thing off again if there’s nothing to bring me back down to normal. So I need a plan. It’s doesn’t have to involve you, but I need the next hour planned out so that I can follow it and feel in control. But I won’t be able to come up with something myself because I won’t be able to see the wood for the trees. So it might be ‘go get your crochet, what animal are you working on?’ Or ‘watch an episode of X and then have a bath. Do you need a magazine?’.

That being said, this brings me to the second way people use the phrase:

2. To excuse negative behaviour

Like I said, I try to reserve my meltdowns to home and not eat random people alive just because my hormones have gone a bit crazy. Although a poor British Gas man got my wrath one day! I try to walk away from as many situations as I can or just stop talking if I think I might be rude. Sometimes I get it wrong, but I’ll always apologise afterwards, which is more than can be said for some people who don’t have hormone problems!

So I find it annoying when some people use it as an excuse regularly. Whichever way you look at it, no one deserves to be treated like crap all the time, hormone problem or no hormone problem. Something like PMT or being stressed at work is not a reason, in my mind, to be rude to everyone you know for a week every month. PMT is like a fluffy rainbow unicorn and my illness a fire breathing dragon in comparison- if I can try hard to minimise my outbursts as much as possible (or at least apologise), then other people should try too!

Note how I said try. Everyone’s human and has a bad day. I’m not talking about people who have a bit of an off moment or who are going through a hard time, I’m talking about people who use ‘it’s my hormones’ constantly as an excuse for being rude.

So you can see, it’s a bit of a tricky phrase because using it as an excuse is annoying but said flippantly is also annoying. Maybe it’s the ‘just’ that it always comes with. I don’t know. But I do know that I will probably walk away quite sharpish if it’s said to me so I don’t end up punching the person who says it to me!

Advertisements

Going away for the weekend

What do you usually pack when going away for the weekend? Clothes? Toothbrush? Packing for a chronic illness is more complicated. I’ve always gone by the mentality that it’s better to be over-prepared than under, but I’m not actually packing over-the-top for going away- this is what’s recommended people with adrenal insufficiency have when they’re at home, so logic means that it’s even more useful when you’re in a different place from your GP and Hospital who know you. So here’s just my ‘medical’ stuff, before I even pack normal stuff:

That doesn’t include my meds bag and emergency injection I usually carry in my handbag anyway.

I always have a Hospital bag packed anyway with spare boxes of my medications, pjs, wash bag, phone charger, book, flip flops… pregnant women have one and they (usually) only go to Hospital once in 9 months. I tend to end up in Hospital 3-4 times in that period. So it makes sense. And if I take it with me when I go away, it saves having to find extra meds etc to take away.

Then I have a blood pressure machine (also does heart rate), thermometer and blood sugar testing kit. If I do have to go to Hospital, this is basically everything they do at triage and we’re encouraged to check these things regularly as patients with AI anyway. So I know what numbers mean I have to double or triple my HC and which ones mean I should be heading to Hospital. Basically, I can avoid going by doing my own obs and making adjustments myself for a little while, rather than thinking ‘I feel ill but not sure if I’m bad enough for Hospital ill’ and risk getting it wrong. Plus it’s useful to be able to say to people ‘these were my obs an hour ago’ as a benchmark.

All my daily pills are in a dossett box already so I obviously need to pack those. And I always take extra hydrocortisone with me in case I end up stuck away from home because of weather or something, or if I end up in Hospital (they never have it) or need to stress dose for some reason.

I have a medical alert tag with info on the back attached to my head rest in the car. If we’re in an accident, emergency response people need to know to give me drugs fast because otherwise I would die.

I need my sharps box for the lancets from my blood sugar testing kit and if I use my injection to dispose of the needles safely. I’m also taking more lancets and testing strips with me than I would for a normal day because I’m going to be doing more and eating different things from usual so will probably need to check it more regularly to keep on top of things. I don’t usually test it on days where I eat my ‘normal’ foods unless I feel weird.

One of the biggest reasons people have adrenal crisis is because they’re dehydrated, so rehydration sachets also make it into my luggage. When you’re away, you’re out of your normal routine so sometimes you get caught out and haven’t drunk enough. But drinking too much can also flush out electrolytes, which also causes crisis. So it’s important to make sure you’re not just replacing fluids. Plus if you get any sickness or an upset stomach, it helps with that too until you can get to a hospital. Failing that, I also have antisickness meds packed.

I tend to use more lidocaine patches when I’m away because I’m doing more so have worse pain.

I take these cards with me on a normal day, but they’re more important when you’re away from home. There are alerts and flags set up on my name in my local hospital and ambulance trust which help people know how to treat me. But these don’t work out of the county I live in, and, because it’s an unusual illness, it’s best not to risk being overlooked because someone is unaware of how time sensitive it is.

They just tell people what combinations of drugs to give me and what symptoms they should be looking out for. They’re useful if there isn’t an endo on call to advise. I also make sure I know where the nearest hospital is and whether or not it’s a major trauma centre ie are they likely to know what to do with me!

Weekend packing is relatively simple because you tend to be in the same country and you’ve only got to take a couple of days worth of stuff. And you don’t have to worry about baggage allowance! Packing for abroad or longer trips takes a bit more planning because sometimes you need to carry extra documents or ask your doctor for extra medications in plenty of time.

Stuff from 2017

I wanted to try to make a nice ’17 things from 2017 post’ like other bloggers are doing, but I can only think of 14 highlights. Either that or I’ve forgotten some of the cool things I did! Either way, this post is a work in progress, so if you think I’ve missed something/we did something together that fits in, let me know!

2017 was a bit of a ‘meh’ year. It happened. I survived. I had some lovely times, I also had some pretty crappy ones. Here are some of the blog-worthy things my husband and I came up with while on the M25 this morning.

(In a random order, depending on when I thought of them)

  1. I started my Out With Animals blog. It’s a charity-based blog and you can read about why I started it in a lot of detail here. I looked a bit nuts to start off with, persuading my friends to take animals out and take photos of them to post to sick or vulnerable children, but I’m pretty proud of how far it’s come in less than a year.

Out with animals logo.jpg

2) I learnt how to crochet. Pretty important it turned out for both my animals blog and my other venture this year! Here’s some of where I started:

IMG_0329

and here’s what I can do now!

unicorn 3

3) I decided that if I was sitting around crocheting all day, I may as well try to make some money from it. So I opened an Etsy shop and Facebook page. My small business doesn’t earn me loads of money and I’m never going to be a millionaire, but it funds my crochet hobby (obsession) and gives me a sense of purpose- I’m really liking the challenge. Search Ok Then What’s Next (or @okthenwhatsnext) on social media if you want to follow my pages 🙂

IMG_4537.JPG

4) I became an Auntie again! Now I have a niece and nephew and I really like spending time with them.

IMG_6264

5) I wrote a book. Which I self published, and then people actually bought it! Again, not lots of people, but it’s still pretty cool! Lots of people asked if my Out With Animals stories were available as a book, so I thought ‘why not?’. Plus it’s a great way for keeping the blog going- I can’t work so was getting a bit worried about how I was going to keep being able to afford to make and post animals, but selling the books means it kind of funds itself if people keep buying them. Send me a message via my social media @outwithanimals or through this blog if you want to order a copy 🙂

IMG_5827.JPG

6) Some posts I wrote about adrenal insufficiency on this blog got picked up, retweeted, shared and commented on by big charities either in the UK or the USA. I’ve also had messages from other patients saying how useful they’ve found it. I started it for that reason- when I got diagnosed I couldn’t find anything which told me how to actually live with the illness. So I’m glad it can help other people.

7) I volunteered at an endocrine conference. So I got to help with doctor/nurse education about adrenal insufficiency and addison’s disease. Plus I learnt a lot of new things too.

IMG_0251

8) I published some of my crochet patterns online. And people have downloaded them! I guess this means I can call myself a crochet designer now? I have a ravelry and etsy shop where you can download these from (also called Ok then What’s Next).

9) My husband and I went to 2 concerts at the Royal Albert Hall. Both were really good! We saw Harry Potter and the Philosopher’s Stone performed by a live orchestra and also the Piano Guys.

img_1286

img_1716

10) I turned 30. And we had a ‘surprise’ party for it with lots of my friends. I hadn’t seen a lot of them for a long time so it made it extra special. Here’s a photo of my really tasty cake a friend made me:

img_1511

11) I had fun trying to complete by 30 things lists. I didn’t quite achieve all of them, but I’m still working on them! I had a 30 things I wanted to try before I turned 30 list, and 30 foods I wanted to eat before 30 list. It was great fun to do, so I’d recommend doing it even if you haven’t got a significant birthday coming up!

12) We went on holiday to Devon with my parents. And 2 dinosaur friends! We had a nice week away in a part of the world I hadn’t been to before. A holiday involving scones, ice cream and the sea was great!

IMG_3562.JPG

13) I sent my 100th animal out on an adventure for my Out With Animals Blog. It was Timothy the Tuatara (nope, I didn’t know what one was either- it’s somewhere between a gecko and am iguana!). Considering I couldn’t crochet at the start of the year, it’s very impressive, I feel anyway, to have made 100 animals in less than a year!

IMG_5895.JPG

14) I meditated every day for the entire year. Bringing my streak to 2 years of meditating every day.

IMG_6120

There’s a whistle-stop tour of my year! And if anyone can think of 3 other blog-worthy things I might have done, I’d quite like the symmetry of getting 17 things for 2017 😉

 

Don’t go out if you’re ill

…or at least think about it. I don’t mean if you’ve got a cold or feeling a bit run down, life carries on with those. I mean if you’ve had a stomach bug and aren’t 48 hours clear, have a temperature or have a chest infection which is still contagious.

A couple of days ago, I read someone on twitter complain that they’d had a stomach bug all night but were still planning a night out even though they still felt terrible. And how they were hoping they’d stop being sick by then. Followed by several emojis. Either they were being dramatic and it wasn’t a stomach bug or they’re being a tad selfish.

Just because you’re willing to go out and spread your germs about doesn’t mean the rest of us want to get them. You missing a night out because of a bug isn’t that big a deal, but passing your common, ‘normal’ illness onto other people can literally mean another person misses out on weeks or even months of their life while they try to recover.

If I got a stomach bug, I’d probably be put in intensive care. It takes me a minimum of 3 weeks to get over a basic cold (which I accept I will catch), never mind a chest infection. And then my immune system is so messed up I catch every little thing going round. Obviously I take precautions- lots of anti bacterial gel and I try to avoid close contact with others. But some places I can’t avoid and I also have to have a little bit of a life rather than living in some kind of safety bubble. If I’m going to catch a cold, I’ll catch it. I don’t, however, need to catch someone’s stomach bug.

Besides, it’s not just people with chronic illnesses like mine who don’t want to get sick because someone goes out when they know they’re contagious:

– pregnant women face additional risks by getting ill

– caretakers of chronically ill people- people with compromised immune systems

– cancer patients

– people who have small children

– elderly people

– people who look after the elderly

– people who work with patients

– or, how about no one wants to get ill just because you absolutely had to go on your night out.

So, if you’ve been throwing up all night, have the flu or something else really contagious, please think about how much of an impact you spreading your germs to people has on other people before you decide to head out. One night off for you could equal avoiding a lot of illness for someone else.

Being ‘an inspiration’

I’ve been thinking about writing a post about this for a while, but it’s been hard to sort out the best way to phrase it without sounding ungrateful or arsey. Apologies if I still don’t manage to phrase it well!

There’s a ‘thing’ at the moment where people who don’t have disabilities, either physical, learning, invisible…etc, look to people who do have disabilities and call them inspirational. It might seem like I’m sounding ungrateful by saying this- someone is recognising that people with disabilities face challenges daily that others do not, so we should be grateful of this- but it’s actually not helpful and a tad patronising. Basically, the way it feels when you do have a disability and someone calls you inspirational is that you’re inspirational because you have a disability and still manage to live. That’s it. Just because you’re alive.

Does anyone else get called inspirational for living their lives? Not because of what they choose to do with their lives, but because they wake up each morning and eat their breakfast and clean their teeth…. or even go to university or school or work…. or are married and have children? No. So a disabled person isn’t and shouldn’t be called an inspiration because they do those things too.

For one thing, it’s a lot of pressure. People throw around phrases like ‘overcoming adversity’ and ‘being a positive role model’ and ‘they never complain’. Well, actually, not everyone will walk again who is in a wheelchair. And that’s ok. Some disabled people will live a life where they neither positively nor negatively influence people. And that’s ok. And disabled people will complain about their lives, just as much as any other person complains about their lives. And that’s also ok. Just because someone is disabled doesn’t mean they have to be seen to be continuously fighting some kind of battle. It doesn’t work like that.

Secondly, you might think that by calling someone inspirational, you’re promoting equality and inclusion. But if you’re disabled, it actually feels the exact opposite. There are lots of Facebook posts saying things like ‘special ed kids just want to be accepted and play sports like regular children. Share if you think they should be included in sporting games‘. ‘Regular’ children don’t always get picked for sporting games if they’re not the best. If they’re not the best, why should someone who is considered to have a disability be chosen just because they’re special ed? They shouldn’t be excluded from a game where anyone is allowed to participate, of course, but by including them when they’re not the most worthy contender limits them in different ways. By saying that ‘people with disabilities need to be included in X because they face challenges’ minimises the amazing (and inspirational) things people with disabilities actually do. A kid with a disability might be terrible at sports but an amazing singer. But they might not have gone out and worked at nurturing their musical talent if they hadn’t learnt they were terrible at sports first because they were always allowed to play out of pity. It gives people the impression that disabled people aren’t capable of amazing things and are limited if you make them feel like the only reason they’re included is *because* they’re disabled. I purposefully didn’t write on any job application forms that I had a disability because I didn’t want to tick one of the equality and diversity boxes and risk being offered the job for that reason alone. I don’t want a job if I’m not the best candidate for it. Or another one I see a lot is ‘autistic girl goes to prom’. And? Why shouldn’t she go to prom? Why is her going news worthy?

You might be reading this and thinking ‘well, if she doesn’t want people to give her special allowances, then she should just get on with it like normal people do’. Disabled people do need reasonable adjustments or accommodations to be able to do certain things. Things like ramps and bathroom facilities or extended time in exams. Those level the playing field so that disabled people have the same opportunities as other people, not so that they can have an advantage in life.

As a person with a chronic illness/disability, I need people to recognise that I do have special needs which might need adaptations or accommodations. But because I exist and manage to live with a disability is not a reason to be called inspirational. There are lots of people with disabilities who do inspirational things which are news worthy- athletes, charity fundraisers, people who champion specific causes. But they’re inspirational because of *what* they do not because of their existence alone. Someone can have an inspirational can-do attitude, or inspire young people to pursue their dreams by demonstrating what they’re capable of or support other people in a similar position to them. However, those are all things that anyone can do and be called inspirational for, disabled or otherwise.

Everyone likes praise and recognition for things. I’m sure I do have my inspirational moments, like everyone does. But I won’t be grateful if I’m called an inspiration just for waking up in the morning and not having died overnight- you’re missing everything else that I’m capable of doing and have worked hard to pursue in life in doing so, and it puts a glass ceiling in the way which I didn’t have before.

Plans

I find this time of year particularly anxiety-inducing. There is so much pressure on having the perfect Christmas and new year and looking back at the last year and making plans for the new one. I feel pressure to be ‘normal’ on a normal day never mind the glitzed up sparkly Christmas version of me (if that even exists anymore!) that other people seem to manage to pull off at this time of year. It’s hard when you already feel like you ‘ruin’ things by needing naps/set meal times/can’t walk far etc, never mind when there’s so much more importance placed on gatherings as part of the festive season. Part of it is desperately wanting to feel normal and forget about being sick for a bit, to then be reminded of your limitations in an even bigger (more glittery) way when you ‘fail’. Part of it is how you perceive it. Part of it is the fact that people like to talk about the year gone by and their plans and it leaves you feeling stuck.

I like hearing other people’s plans and accomplishments. But, I’m not going to lie, it’s hard, and it takes a lot of strength to not get bitter and angry about it. Particularly if you’re already feeling terrible from socialising but putting on a good face, and there’s the anxiety of having to answer the question ‘what about you?’ coming up. It’s a no win situation- if you’re asked about your plans, it’s stressful. If you’re not asked because people are trying to be sensitive, it’s understandable but still stressful- you just worry about it in a different way and it makes you feel excluded even if the opposite was intended.

Chronic illness usually limits plans through health reasons, financial reasons because money is tight, logistical reasons because of treatments or practicalities or just plain ‘not a chance in even contemplating that, it’ll make me ill’. That’s before you even consider any of the ‘normal’ stuff people have to think about when factoring in olans. People’s plans usually include:

– moving house

– getting married

– having children

– travelling

– getting a promotion

– changing jobs

– getting more exercise

– setting fitness goals or starting a new hobby

– booking time away or visiting people

– getting a pet

…. just general ‘better than this year’ stuff.

Chronic illness makes all of those hard or impossible. But actually writing that list proved quite therapeutic for me- lots of people might say those are their goals but still not be able to achieve them. And, according to google, most New Year’s resolutions fail mostly through a lack of motivation.

Maybe I need to be looking at it in a different way. People who are healthy, who could manage whatever they wanted, potentially lack motivation to achieve their goals so feel like they’ve failed and wind up feeling the same as me anyway. Whereas I’m at least realistic in my goals and fail because of something I can’t control- my health. So really, things might end up the same but at least I don’t need to feel like I have to make excuses about why I haven’t managed things, or big up the things I have achieved when we have this conversation next year. I kind of know what to expect. For me, the worst bit is when my GP says ‘this year is going to be a good year for you, I can feel it. Roll on 201…’. She’s said the same thing for 4 years now, somehow I don’t believe things are going to suddenly get better when they’ve been getting steadily worse!

My goal, for now, is pretty simple:

– stay alive and live in the present.

Easier said than done. I might be limited to what I can do, but I definitely appreciate it all so much more than before I was ill. If I had a job, I wouldn’t clock watch every day, I’d appreciate the fact I can earn money myself. I love crocheting because I can make things myself and watch things grow from nothing- that’s pretty cool! If I go outside on a sunny day, I look at the different colours more closely. What’s the point in getting a massive pay rise if you’re too busy at work to enjoy the benefits of it? Or why bother having kids if you’re going to spend your entire time moaning about them? Why exactly are you trying to get healthy, because you want to or because you think that’s what everyone else wants you to do? Social media is bad for making us think we need to be living a fantastic, shiny life. But quite often the more people post on social media, the more insecure and unhappy they are, it’s just social media ‘likes’ gives them the virtual validation they’re not getting from their real lives.

Sometimes people’s circumstances also mean they don’t achieve what they set out to. Like anyone can get an illness or be in an accident, or be made redundant, for example. Sometimes it’s a lack of motivation and too much contentment in being able to ‘blame’ everyone else. Whatever the reason, goals aren’t meant to be achieved overnight or in the space of a year even. Life is the bit that’s happening now, not the list of achievements you can tick off at the end of it.

So I’m trying not to let myself get stressed about missed opportunities or plans which I’ll fail before I even try. Everyone else is probably feeling a similar anxiety about the prospect of a new year and new outlook, I’m just willing to vocalise it! 😉

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!

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.