Synacthen Test Results

A couple of weeks ago, I had to repeat my Synacthen test. You can read about they whys and wherefores in my previous post about it, here. This is the third time I’ve done this test, and, this time, I was hoping for some definitive answers about whether or not I’ve got Primary or Secondary Adrenal Insufficiency, or both. The other times I took the test, they didn’t collect an ACTH sample, which is one of the ways you can rule in Secondary Adrenal Insufficiency, despite me asking them to last time. This time my endo and I both agreed that it was important to get this result.

However, I’m a tad grumpy because my bloods weren’t processed within the 30 minute window for ACTH testing, meaning they couldn’t get a result. So we still don’t know! And I might have to potentially take part of the test again, which I’m not happy about, because you have to stop steroid medications, which is horrible.

Not all of the test was pointless though. We did get my cortisol results back. My baseline result was ‘less than 10 nmol/l’ and my 30 minute response after ACTH injection was 63 nmol/l. For reference, a ‘normal’ person’s levels should have been 500 ish at baseline and increased further by 30 minutes. I’ve told many doctors many times that I might ‘look ok and sound ok, I’m just good at compensating’ and this test kind of proves it. On the day of the test, I was able to walk the short distance into the hospital and sound coherent in conversations, but with a level that low, both before and after the test, I wasn’t far off being critically ill or dying from very little shock or over exertion. Maybe I should give myself more credit that I am still able to even vaguely function, be nice to people and not be a hormonal wreck all the time even though my bloods came back like that!

The results were sent in the post to me and my GP within 48 hours of the test along with very specific instructions, which kind of also highlights the seriousness of having low cortisol. I already knew the instructions anyway, and nothing changes medication wise for me because I’m already on replacements, but it did come with a very helpful, idiot-proof letter from the professor in endocrinology managing my care. It clearly says that I have Adrenal Insufficiency and not Adrenal Suppression (where the adrenal gland might be suppressed and stand a chance at recovery) and that no one is allowed to decrease my steroid dose. Hooray! I’ve been having arguments with various people about these two points for about a year, so it felt good to have it in writing.

Even better, it very clearly states that IM or IV therapy might be required ‘to prevent risk of adrenal crisis’. This might not seem like a big thing, but sometimes I end up in hospital arguing with medics who are refusing to give me my IV, that while I might not be in full blown adrenal crisis because I’m quite clearly talking and not unconscious in a coma, could we give me the IV while I have hypoadrenal symptoms so that I don’t have to get to coma stage before they give me it. This letter might help with that. And, the icing on the cake, it says ‘the lowest dose the patient feels well on is the safest dose’, in big letters and bold. Which means the this department seems to actually care about what its patients actually *feel* like and not just being on the standard 10/5/5 dose.

So my annoyance at the ACTH test being messed up kind of got neutralised a bit by the really helpful stuff that also came in the envelope. Fingers crossed I don’t have to do the test again though!

What I learnt from watching the sunrise

After being ill with Alzheimer's for a very long time, my Grandma died this week. So it wasn't unexpected and definitely kinder for her than living the way she was, but, you know, a family member died, so it's still sad.

I found myself awake for my usual 4am time (endocrine system usually wakes me up then). We were away on holiday in Devon with a beautiful view of the sea, so I decided to get up and watch the sunrise over the sea and Wales. Like lots of people do after someone dies, it got me thinking about the impact we leave on this planet once we die. I read somewhere once that people 'die' twice- firstly when they physically die, and again when the memory of that person dies as well e.g. the people who knew them either die too or 'forget'.

But what if you don't really know anyone? Or people don't talk about you to remember you? Does that mean the impact you had was nothing?

This is where the sunrise was quite timely. It was a beautiful sunrise as well, which helped! The most important thing which happens in our lives every day consistently is that the sun rises. Without it, plants wouldn't grow and we wouldn't have oxygen. Or we'd freeze to death. Or be depressed from not having any light. You get the idea. But hardly anyone notices it, except insomniacs and people awake at 4am like me. And even fewer acknowledge it or are grateful for it. But every day it pops up, does its thing and goes down in the evening.

I guess my point is that we might think we have very little impact on other people, but, actually, we still can without realising it. Seemingly small or routine things are actually the important things. Kind words or gestures which the giver might forget usually stick around the longest with the person receiving them. Random acts of kindness do make a difference.

So our impact might not be the same as JK Rowling losing billionaire status because she gave all of her money to charity kind of impact, but to someone somewhere, something very simple can have the same impact on someone as the sun rising has on the billions of people on this planet.

What I’ve learnt from clouds

I'm on holiday by the sea in Devon. In fact, I can see and hear the sea from every window in the house we're staying in. It's been lovely! The other evening, I had a bath in this amazing bath:

I listened to the sea and watched the clouds. It was sooooo relaxing. I'm going to apologise to my friend Thor, who studies clouds, because I'm pretty sure my analogy isn't remotely meteorologically correct (I'm not even sure if that's the right spelling!).

There were grey, rain clouds and fluffy, white clouds. The fluffy white ones were still and big and there consistently and the grey, rain ones were drifting speedily by in the strong wind. Every now and then the grey ones covered the white ones and you only got glimpses of the white ones. And then sometimes the grey ones were really thick and completely obscured the white ones. But the grey ones passed over and the white ones came back again, still big and white and with the sun reflecting on them in the same place.

On my Calm app, Tamara (the woman who narrates it -we're on a first name basis 😉) says every day 'emotions pass, this too shall pass'. And it's like the clouds. The bad, nasty things are just dark clouds temporarily covering up the white, fluffy, exciting things, or the good things in life. Good things are still there in the background even when the dark clouds pass over. You have to work harder to see them, but they're still there.

Not exactly a difficult conclusion to come to, but it made me feel good at the time I was watching clouds (which I love to do anyway!). Plus, for once, I get to brag about somewhere beautiful I've been 😉

Why I Started ‘Out With Animals’

It’s a very strange thing when you stop working because of ill-health. The only thing I can really compare it to in any way is it must be a bit like what retirement feels like. It’s the end of an era, you’re admitting that you’re not able to function like you used to, you’re taking some time for yourself and you’re putting your working life behind you. But retirement is expected, and it’s a celebration in some ways as well. When you stop working 40 years earlier than expected like I did, you don’t get people celebrating your working achievements with you or praising your dedication and merits. I didn’t even get a leaving card or a cake. It was a bit like I died- I just ceased to exist in the working world and life carried on for everyone around me.

I get it, to everyone else – family and friends included, not just work colleagues- it’s a case  of people don’t know how to respond. It’s not like leaving for a new and exciting job role, or a change in career, or going back to studying, where you can wish someone luck in their new projects. It’s not like giving up work to go on maternity leave or to concentrate on bringing up your family where you can at least make jokes about the perils of parenthood, while also wishing luck for the future. It’s not even like taking a break because I’ve got cancer or another illness with an end date on it and I’d hopefully go back to work sometime in the future. So people didn’t know what to say, and, truth be told, it’s only now I think about it that I realise what would have helped me at the time.

I realise now that I didn’t fail because I stopped working. But I felt like that was the case because of my feelings about it and because of the way people (inadvertently) made me feel by dodging the subject or the way they spoke to me about it. There should have been something to mark the successful bits of my career.It takes a bit of getting used to, being unemployed, even if you’ve been off sick for a while beforehand. It’s completely different and still comes as a shock. It also takes a bit of getting used to admitting you’re disabled. So until Christmas, I basically was trying to find where I fitted in the world without my job and all of the things I loved about having a job which came with it. Not to mention the sudden drop in income and the change in lifestyle which has to come with it.

I decided to knit everyone I knew Christmas presents, which kept me busy. But then I got to January, where everyone always feels sad and depressed anyway and it kind of hit me. What the hell am I going to do with my life now? The way I saw it, there was two options:

  1. Give up and become a victim-like personality and exist purely as my illness and nothing else.
  2. Find myself a reason to get up every day which gave me some sense of purpose. I can’t work but I can find something to do with my life which makes it actually worth living. I’m definitely not living the way I planned my life to be, but I can’t do much about the cards I’ve been dealt, so I may as well make the game as good a one as I can. Just because I’m incapacitated doesn’t mean I’m incapable. I still have worthwhile characteristics and qualities which didn’t just vanish when I stopped working.

Number 1 is by far the easiest. If people feel sorry for you, you get attention, and who doesn’t feel better from attention? You can use your illness as an ‘excuse’, some people will let you act in whatever way you want ‘because you’re sick’. But it’s more pity than attention, and it’s completely fake. And, if you’ve got a normal lifespan with your chronic illness, other people aren’t going to put up with you acting like that forever.

Number 2 is definitely harder. Most mornings I wake up and think ‘here we go again, I feel awful, I haven’t really slept, I wanted to do X today, but I probably won’t manage. Why is the kitchen so far away to make my breakfast? Can I really be bothered with this?’ In January, it was even worse and I really struggled mentally. So I decided to do something about it.

I sat down and thought about what I’d like to do with all my ‘free’ time if I wasn’t restricted by illness:

  • volunteer
  • support a charity
  • do sports
  • play music
  • start a business
  • meet up with friends
  • read
  • study something
  • Take up a hobby I do every day
  • travel

Then I put a line through all of the ones I can’t do because of illness. Meeting up with friends with no money wasn’t going to be a sustainable thing. Plus they have jobs during the day. Reading is something I struggle with. I’d been supporting Post Pals, a charity which sends post to seriously ill children to cheer them up over Christmas with their reindeer post scheme, so I contacted them and asked if there was anything regularly I could do. They said people send their kids post all year round. I know I like receiving post when I’m feeling poorly and depressed, so I decided to find something along those lines which I could do. I could do it from home when I could manage it with my illness, which was good for me too.

However, as much as sending post to children would give me something to do every now and then, it wasn’t really the regular thing I was looking for i.e. something every single day. What else can I do every day? Knitting. I was doing a lot of knitting. I could also write blogs on my phone. The thing with me and charity work is that I don’t do charity work for the ‘praise’ I get back. I actually prefer doing charity stuff if I don’t get feedback from whoever I’m doing it for, because it makes it feel less like I’m doing it for myself and more like I’m doing it for the ‘right’ reasons (in my head anyway). But, I was pretty isolated, and I knew that whatever I was trying to do every day needed to be something which involved a two-way interaction process with another human being, so that I didn’t get stuck in a depressive spiral.

So I had knitting, Post Pals and writing as my ‘things I can do most days’ list. I’d been making a lot of animals for my nephew because I’d got bored of making conventional things like scarves. The animals were good to make because they only took me a couple of days each and they knit up in sections, meaning I can start and stop them when I needed a rest without getting lost. Except my nephew was quickly developing quite a zoo in his bedroom, so that couldn’t continue much longer. But I thought ‘if he likes animals, then other kids will too. Maybe I’ll make some for the post pals kids‘. Another thing which I realised, is that I always have some kind of stuffed toy in my hospital bag because it gives me some kind of comfort when I’m feeling vulnerable in a hospital. Now, if I like to have something pocket sized to take with me as a 30 year old, those kids from Post Pals definitely will. What if the animal was their friend? And wrote a letter to them to say hello when they got sent to them? Or, what if the animals talked about what they’d been up to before they got sent to the child, and then the child could introduce them to their world?

Basically, I came up with: knit an animal (daily habit), persuade a friend to take out an animal and take photos of it doing things (2 way interaction for me), write a story (daily habit), post the animal and story off to the post pals children (charity). My doctors, especially my psychiatrist all heartily approved of me doing this.The friend who took the first animal out for me works in comms, so suggested social media to get more people involved, and because she found the whole concept quite amusing! I was having to work hard to convince people that they wanted to take a stuffed animal out with them places and take photos of it ‘pretending’ to be on an adventure (people thought I was a bit nuts), so I set up twitter, instagram and Facebook profiles, as well as an online blog for the stories, under the name ‘Out with Animals‘.

I was quite enjoying being sent photos of the animals doing fun things (and seeing what my friends were up to) and using my brain a bit to write stories- it appealed to the creative side of me that had kind of got covered in dust since stopping music teaching. Then around Easter time, a lot of people I know had holidays planned and, instead of me thrusting an animal on them and begging them to take photos, suddenly a lot of people asked if they could take an animal with them. And I’ve had some really imaginative photos from lots of people! I started using the social media pages I set up to ‘chat’ to places the animals visited- I had a lovely chat with Monarch Airlines about Lizzy the Lizard’s travel sickness from having eaten too much Easter Chocolate, I managed to get Eric the Elephant a City of Culture Badge by tweeting them about his adventures and the Kennedy Space Centre tweeted me back about Oscar the Octopus’s attempt to be the first octopus in space. Not only were the animals getting more and more adventurous- they’ve been to places all over, from Italy to Japan, but it really was helping me and my mental health. Around the same time, another charity called Help for Dominica emailed me and asked if I could send some animals over to Dominica to help with their school education and outreach programmes following Tropical Storm Erika. That was also pretty exciting, and I’ve sent 7 out there so far.

Now I’ve constantly got a ‘list’ of animals that people have requested to take out, and I’ve also had a few random strangers who have come across my page ask to be involved either by crocheting animals or because they want an animal to take out. Groups and organisations like primary schools, Scouts, Rainbows, Hospitals, the army, a mayor, and the police have asked to be involved somehow. That’s pretty cool for an idea that came out of me sitting in my PJs knitting one day in January!

Making animals is in no way filling the massive hole that teaching and having a job left. But it’s something I can do which helps other people, gives me some kind of a sense of purpose, and stops myself from hiding away and exacerbating my illness by isolating myself. I can do it at my own pace and stop when I’m having rough patches with illness. If you follow my social media, I tend to do an update before 8am when I’m doing my whole ‘here we go again….’ monologue- that’s intentional. It’s the hardest time of day for me, and even when I’ve been in hospital, I’ve still managed to post an update. It means that I can feel like I’m contributing to life even though I’m not out of bed yet and everything is really hard work. I’ve achieved something even if I manage nothing else for the rest of the day. It’s only a small thing, but it’s quite important for me to be able to do it. It’s not the same as having a career, but I enjoy doing it, and it’s a lot better than giving up and letting my illness take over completely. If nothing else, I’m proud of myself for that!

I have to repeat my synacthen test (again)

Here’s hoping for third time lucky…The synacthen test is the diagnostic test for adrenal insufficiency. It works out if your adrenal gland is working and/or if your pituitary gland is sending the hormone ACTH to the adrenal gland to tell it to make cortisol. I did a repeat one last year because a doctor thought I might not be cortisol deficient anymore and said I could come off steroids. The test showed he was very wrong, my adrenal gland was making only a dribble of cortisol and I definitely did need steroids. However, because they weren’t expecting those test results, they only ran the cortisol bit of the test and not the ACTH bit, despite me asking them to. And now it’s been decided that we need that result too, so I have to repeat the test, which I’m a tad grumpy about.

The test itself is easy. Blood test, injection, 2 more blood tests, done within an hour and fifteen minutes. Easy peasy. But if you’re already on treatment for AI, it means coming off steroids beforehand, which is not good since you get told at diagnosis ‘if you miss a dose, you could die’. Last time, I had to come off steroids for about 28 hours, which was horrendous and I ended up in resus soon after. This time, they’ve said to do 15 hours. It’s a bit like saying ‘we’re going to take some of the oxygen out of the room for a little while. Chances are you’ll probably be fine, you’ll just feel really crappy, you might hallucinate, be in pain, perhaps fall into a coma, but most people are alright so you will be too‘. A lot of it, I’m aware, is psychological. I didn’t die before I started treatment from low cortisol, so chances are I won’t now. Except for emotional distress or injury or illness, so please keep everything nice and calm for me and germ-free for the next couple of weeks 🙂

So, you might be thinking I have a diagnosis of AI, so why do we have to do the test again? Especially as I’ve already done two, and the results are always going to be slightly skewed because I’m on steroids.

It’s because we’re trying to work out if I’m primary or secondary AI. The treatment for AI is largely the same either way, but it might help get to the bottom of some of the other weird endocrine things which are going on. In a synacthen test, here’s what’s supposed to happen:

If you’re primary AI, your first cortisol blood test will be very low but your ACTH level will be likely very high. This is because your pituitary is constantly sending out ACTH to the adrenals desperately trying to make them work to produce cortisol and wondering why they’re being stubborn and doing nothing. When you’re given the ACTH injection, you’ll end up with more ACTH in your blood and still no cortisol. Your adrenal glands don’t work. The primary problem is with the adrenal gland.

In secondary AI, you might have a cortisol reading to start off with, but it’s likely pretty low and your ACTH will be non-existent. So ‘normal’ people at 8am should have a cortisol level of about 500 ish, give or take. Someone who is secondary AI might have a baseline reading of 200-300 or less, but it’s still nowhere near what it should be. Sometimes it might be 400 ish. The important thing with SAI, is how your adrenal gland responds to the ACTH injection. If it ‘stimulates’ in response to ACTH, e.g. roughly doubles the cortisol, it means your pituitary isn’t functioning properly and there isn’t any/enough ACTH coming from it to make the adrenal gland work. So the problem isn’t with the adrenal gland itself even though it looks that way, but because the pituitary isn’t doing its thing it’s causing a secondary problem.

I’ve done 2 synacthens now and failed both. However, my results are a bit odd which is why we really could do with that ACTH result. Last year when I did the test the cortisol results were (nmol/L):

Baseline (before injection): 18

30 minutes blood test: 54

60 minutes blood test: 65

So I had a very slight amount of cortisol production to start with. But bearing in mind a healthy person’s cortisol at that time of day is 500, that’s very low. Then it did increase a bit, although it’s still far from the ‘safe’ range which starts at 150 (ish). In other words, I shouldn’t have been walking around and talking before the test, but somehow was. I saw a consultant a few weeks ago who looked at the result and said ‘that’s your synacthen? How is that right?’. I had a really low reading to start with, and then it didn’t really move (like primary). But it did double the result technically (like you’d expect in secondary), but if my adrenals were working properly and I was actually secondary, it should have gone higher than that. You can also be both primary and secondary AI at the same time ie the adrenal glands don’t function well and the pituitary also isn’t doing its thing.

I could speculate about what my last synacthen potentially means until the cows come home but it’s a pretty pointless exercise because, knowing my luck, my endocrine system will throw a curve ball and it’ll be doing something completely different at this synacthen. A lot has changed in the past year, but I wouldn’t say no to a miraculous recovery though!! The reasons I want to have some kind of answers from it include:

– the potential of some other treatments e.g. replacement ACTH or aldosterone which might help some of my symptoms

– we might be able to see if there are any other endocrine loops which are broken and treat those

– hopefully my baseline dose will be looked at again. That’s another blog post for another time though.

– I hopefully won’t have to have repeated conversations with other doctors which include me trying to explain the differences between primary and secondary and why we’re not sure which one I have, but can they please bear both in mind while treating me ‘just in case’ it helps. Most doctors don’t understand both versions and only remember one of them or get confused, so it’ll be good to just have one to talk about!

Hormones are fascinating. Did you know the adrenal cortex is made up of 2 bits and the bit that currently doesn’t work in me is responsible for about 90 hormones? But I’m only taking medication to replace one of those. 1 out of 90. Now you can see why I don’t give people much sympathy when they blame their bad moods on hormones- if you think PMT is bad, you should try having 89 hormones missing completely! (Guess which bit of your body is responsible for PMT as well…!)

‘Let’s Reduce Your Steroid Dose’

No, let’s not. When I hear that from a doctor it makes me want to jump up and down and have a strop. Unless they’re making an informed decision, which they’re usually not. This was from an endocrine registrar at my 6 month review. Cue lecture from him about steroids being bad. It’s always the same:

  • ideally we want you to be on 10/5/5. You’re currently on a much higher dose.
  • steroids can cause you problems with your blood sugar and put you at risk of diabetes.
  • steroids make you put on weight. You’ve put on a lot of weight since your last review.
  • they also make your bones weak and you’ll end up with osteoporosis.
  • it’s not good for your heart to be on high doses of steroids.
  • you’ll have other problems with your stomach and teeth crumbling because of steroids.
  • you might get cushing symptoms (too much cortisol).

To a lot of doctors, steroids are BAD. End of. I agree, if you’re taking them to reduce inflammation or swelling or following an operation or for something temporary. Long term steroids are bad, particularly at high doses and you want to taper off them asap, otherwise they can have bad consequences for your adrenal cortex. That ship has sailed! However, there isn’t another treatment for Adrenal Insufficiency currently, which means steroids are necessary, despite side effects. We’re only replacing what our body doesn’t naturally make.

So I took a deep breath and started my well rehearsed speech as to why I am not going to reduce my steroid dose from what it currently is unless there’s a better reason than the doctor feels like it.

You should be on 10/5/5

12.5mg of Hydrocortisone is the survival dose, which means lots of doctors see 20mg (10/5/5/) as them being ‘generous’. However, 10/5/5/ doesn’t take into account different people with different weights, metabolisms, day to day activities, other illnesses… It’s how old school diabetes used to work- everyone had to take the same dose of insulin and get on with it. Except now they can change their insulin depending on what their blood sugar is doing because doctors have realised how stupid that advice was and how crap diabetics’ quality of life was like that. Like diabetes, Adrenal Insufficiency isn’t a one size fits all, but modern medicine has not caught up with this yet. So yes, I’m on a higher dose, but I can’t get out of bed on 10/5/5.

Problems with blood sugar

Well, I’m already Insulin Resistant because one of my previous endocrinologists didn’t listen to me and my ’10/5/5 isn’t enough’ speech. So to compensate for the lack of cortisol in my body and to stop myself going hypoglycaemic (and ending up in a coma), I had to eat a lot to raise my blood sugar. Like every 10 minutes eating. So now I’m insulin resistant. Steroids make your blood sugar go up, and actually, my blood sugars don’t ever go above 6, even after I’ve eaten, which is well below ‘diabetes concern’. So I’m currently more at risk of being hypo- rather than hyperglycaemic.

Steroids make you put on weight

Yes they do in a lot of people. However, I was steadily losing weight on my Low Carb High Fat regime, until my GP said the fateful words ‘let’s reduce your steroid dose by 2.5mg’ in February and then I started putting on weight again. Why? Because I started having hypos, which you have to treat with food. Plus I feel like I’m going to pass out and am hungry all the time unless I eat. Whereas before, I wasn’t snacking between meals or eating at night. Now I’m up 2 or 3 times a night feeling awful. If I take more Hydrocortisone, I go straight back to sleep and don’t need to eat. Which would you rather- should I eat more overnight or take more hydrocortisone? Because you’re saying both are bad, but I’d quite like to avoid dying. Besides, now that I’ve put on weight again, if anything, my steroid requirement will have increased rather than decreased. So decreasing it would be doubly bad.

They make your bones weak.

Also true. I already have osteopenia (pre-osteoporosis). However, do you know what else is bad for your bones? Not getting out of bed and moving. And also putting on weight. So on a slightly higher dose I can do my physio and lose weight, and eventually my overall steroid requirement will reduce and I might even be able to manage on 10/5/5. Surely that extra 2.5mg in the short term isn’t going to make that much difference to my already weakened bones? But being able to move my joints and lose weight will definitely have a positive impact. Besides, what’s the point in having slightly stronger bones in old age when I didn’t manage to get out of bed for 30 years…

It’s not good for your heart.

You could say that about many things. Alcohol and smoking aren’t good for your heart but people still do it. I’ve been adamant that there’s something weird going on with my heart for about a year, especially overnight, and how this is linked to my steroid dose, but got told a few times that I was ‘just anxious’. My sleep study showed I have an irregular heart rhythm while asleep, so not due to anxiety. When your electrolytes are ‘off’ (low cortisol), it can cause a funny heart rhythm. And I don’t get that heart rhythm if I take more steroid. So maybe my steroid dose isn’t actually high enough?

Other problems

I could get a stomach ulcer just because I get a stomach ulcer. These things happen to ‘healthy’ people too. If I’m going to get these things because I’m going to get these things because I’m taking steroids, they’re going to happen regardless of whether I’m on 10/5/5 or my current baseline.

Cushings

Has anyone tested my blood level to see if I’m remotely near cushingoid? No? In which case we’re not changing the dose ‘just in case I get cushingoid’. If my blood work suggests it, then I’ll reduce my dose, but not otherwise.

So yes, I agree that being on the lowest dose of steroid which my body needs is definitely a good thing. But I’m not decreasing it now when you don’t have any blood work to support it and I’m still very symptomatic and have a poor quality of life as it is.

I obviously didn’t say it in as sarcastic a tone as I’ve written it, but I have this argument so many times a year it’s getting tiring. This doctor was actually pretty amenable and agreed with me after I made my points. A lot aren’t though, which is very, very frustrating. I have absolutely no issue if the doctor is making reasonable, informed judgements based on my symptoms and blood test results. But most aren’t- they are adamant that 10/5/5 is *the* dose I should be on because anything over that is bad because steroids are bad. And that’s what they’re basing their decision on, which isn’t right. There’s a bigger picture here. Yes steroids are bad, but they’re also what keeps me alive and living, so actually, steroids, to me, are pretty damn good.

Communicating With Other People

I know this is true of other people with mental health conditions but something I’m having arguments in my head a lot at the moment is how I communicate with other people. There’s two main ways I interact with people: face to face and via technology.

Face to face 

I like meeting up with people but social situations make me anxious. Physically, it’s a lot more tricky for me to meet up with people because of the limitations imposed by my illness. But I sometimes find it quite stressful because I don’t remember half of what I or other people say. Which shouldn’t be a problem, except for the fact that I usually spend a lot of time afterwards over-analysing things that have been said or the way I perceive someone’s body language and somehow manage to make the situation appear in such a way in my mind that I’ve done or said something ‘wrong’ or to upset people. Even when I haven’t. Rationally, I know this. But because I can’t remember much of the interaction I don’t feel like it.

*sciency bit* This is something which lots of people with anxiety experience: over generalisation, negative filtering, emotional reasoning, blame… I have an app which talks me through it all. However, I don’t make the right hormones which help counteract the feeling which means that sometimes no matter how much CBT I do, the feeling doesn’t go away- the chemicals don’t and can’t kick in. I don’t feel any calmer for it.

Via technology

I love social media because I can feel connected even when I can’t get out of bed. Except social media is fake and can mess with your head if you’re not in the right mindset. People only put up what they want you to see, but it can be difficult to remind yourself of that on particularly bad days. Instead it’s easy to fall into the trap of thinking that everyone has amazing lives and I don’t. Some days I log my phone off completely and don’t go on social media at all.

Another great thing is text message or messenger. Except it’s not that simple. I’m not unreasonable, I know that people don’t reply to messages straight away because people have things to do, and I don’t expect people to be at my beck and call. But if I can quite clearly see someone has read the message, or are online and not reading/replying, or just not replying full stop, I find it hard to deal with on bad days. I over-analyse and assume it’s something I’ve done wrong, a bit like after face to face. So at times when I actually need interaction when I’m feeling low, I find it easier not to text or communicate with anyone because then I don’t have to worry about people not replying or answering. Some days I don’t answer my phone when it rings because I’m too stressed out by the thought of it. The advantage of text is it’s all written down so I know exactly what I’ve said. The disadvantage is you can’t see people’s facial reactions. Rationally, I know people don’t reply for a bunch of reasons, one being they forgot or had to do something else. But I rarely manage to convince myself of this on bad days.

Now, if you’re a mentally healthy individual, you’re probably reading this and thinking ‘what an idiot’. I admit, it sounds stupid. But that’s the hard thing with mental health, you feel stupid so you don’t talk about it, and by making it a taboo subject, you feel more stupid. My Dad said once ‘you’re making the mistake in thinking that everyone thinks about things afterwards in as much detail as you. Chances are, they can’t remember what they said either’. He’s right, and he also probably doesn’t remember saying it! It matters more to me because I can’t recall what was said even if I wanted to because I feel so foggy, so I feel at a disadvantage and like I’ve lost control. It’s also foolish to take responsibility for everything that happens in a conversation- whether it’s a good or a bad one, it still takes more than one person to share a conversation so they’re just as much responsible for how it pans out. 

I try to make a point of replying to every message I get even if it’s just with a ‘lol’ or an ‘ok’, unless I’ve got a really good reason not to, because I know how anxious it makes me feel if I’m having a bad day and it’s the other way round. Sometimes I genuinely forget, like if my phone rings in the middle of me typing or I fall asleep (and usually drop my phone on my head), so I’m sorry if that happens. I’m well aware that one of the ways to help myself is to break the cycle and challenge my thinking, but it can be pretty hard work and you have to chip slowly away at it to be successful long term rather than trying to bulldozer it in one go. If you do have a friend who’s depressed, chances are it’s when they go quiet that they need a chatty text message, rather than when they’re actively posting on social media or sending messages. 

Getting Anxious About Consultant Appointments

I’ve got a few appointments coming up with some ‘big’ doctors. They might not actually come up with anything at these appointments (lots of tests planned) but they’re ‘big’ ones in the sense that I won’t know more than they do about endocrine-y things- they’re the big bosses. That makes me sound like I don’t have much faith in my other doctors, who are also helpful, but I do spend a lot of time in some appointments explaining what my current diagnosis is and how it interacts with other bits of the body because they don’t understand it. Not really the way it’s supposed to work! 

I get anxious about consultant appointments but not for the reasons you might think. 

Getting ‘bad’ news

I’m not worried about bad news, in fact the best appointments I’ve had have been the ones where I’ve been given bad news. There’s actually something tangible to work with then! The one that stands out most in mind is where I got told I needed to make permanent life changes as my current life was killing me. It was a relief to hear this because it meant I had something I could work with and take control of rather than trying to keep it all going. If you feel sick already, you’re being told something you already know, it’s not a surprise. 

So you might be thinking if I’m not anxious about the thing that most people get anxious about, what do I have to worry about? Basically, I have a similar level of anxiety to how people feel about having a big meeting with clients or when they’ve got a business trip planned: sense of anticipation, the desperate need for everything leading up to it to go well, stakes are high kind of feeling. Just like flying internationally, going to the hospital (for me) feels a logistical nightmare. 

Getting up early

Most of my appointments are morning clinic ones, and even if they start at 11am, I still have to be up and functioning a lot earlier than normal. Which I struggle with. I also have to take tablets and eat at an earlier time, which messes with me for the next couple of days. 

Travelling to the appointment

I can’t get myself to the appointment which means I have to rely on someone else taking me. It’s not a big worry, it’s just another thing to factor in. 

Getting to the appointment

Two things which tend to happen when I have to get up early is I need to wee every 10 minutes and I also get a terrible stomach ache. So the journey is usually uncomfortable for me.

Parking

Lots of people hate parking in hospitals because it’s one of the most irritating things in the world. There are never enough spaces and you have to leave an extra half an hour because it can take that long to find a space. But I also have to factor in I can’t walk far, and hospitals are about the only place your disabled badge is useless (because there are a lot of disabled people). 

Walking to the appointment

I have to leave extra time to get from the car to the appointment because I’ll:

A) need the toilet so have to go there first 

B) need a few rests to get to the right department 

C) want to leave time to cool down because I’ll be sweating a lot by now and don’t want to see my doctor looking that disgusting 

D) I’ll drink a lot of water to cool down so I’ll need to go to the toilet again. The more I walk to the toilet, the more hot I get, so I drink more water…

Sometimes I use a wheelchair but they’re like gold dust.

Booking in

Outpatient departments are noisy and tend to be open places with lots of clinics. I find that level of noise hard to deal with so talking to the receptionist can sometimes be tricky if they don’t talk clearly enough. I also will struggle to stand in any type of queue after walking that distance. 

Plus I have lots of appointments. So part of me is always worried while booking in that I’ve got the date or time mixed up, or I’m in the wrong hospital. 

Doing obs

You always have to have your BP, heartrate, weight and height done before clinic. My BP and HR are always high in clinic partly because I feel like I’ve run a marathon, partly due to white coat syndrome. My weight is a sore spot: the person doing the obs doesn’t know me and doesn’t know my case but there’s a ‘make every contact count’ policy, so I nearly always get told I’m overweight with a pitying/disapproving glance. Which leaves me wanting to scream at them because my weight is part of my complex medical problem which people are still trying to work out. Instead I listen to their lectures, smile and walk out quietly seething.

Seeing the doctor

So I’m already ridiculously wound up from everything before I even get to the doctor’s room. I worry that the doctor won’t be able to help me because they’re waiting for further input from other teams, need blood work or because it’s a waiting game thing- the thing with endocrine disorders is that you have to keep testing because things change all the time, even on treatment. I’m always anxious they ‘won’t believe’ me, even though I tell the truth and am a good patient. I don’t always trust them if they get fundamentals of my condition wrong. I worry about getting fobbed off. I feel bloody knackered because I basically need a science degree to understand half the words they’re saying- endocrinology is not easy. I get the most anxious that I’m just going to be told to get on with it (which happened a lot in the beginning), and left to deal with it by myself. Or that the next review will be in 6 months

I always go with the hope that something will change or there’ll be some new diagnosis which will mean a step forward, knowing fine well there probably won’t be. But it’s good to try and be a bit positive! It’s a bizarre feeling to leave the appointment disappointed that there’s ‘nothing wrong’ with you (that they can find currently), because what it really means is that there *is* something wrong but they haven’t found it yet. Which means you have to go back to feeling awful and despondent and wait for the next round of tests and appointments to start the cycle again. Realistically, I’m not going to miraculously feel better until someone works out everything that’s making me ill in the first place. And it’s a giant puzzle where different pieces keep going missing. 

There are lots of challenges and anxieties for me due to the logistics of going to an appointment. But the hardest bit is walking out the door knowing that there’s very little chance of things improving for another X months at least. The clock starts again and all you can do is concentrate on one day at a time. I go to a lot of medical appointments so the idea of seeing a doctor and hearing news doesn’t make me anxious by itself. It’s what they’re not able to tell me because I’m a bit of an anomaly and how they can’t help me which I worry about the most. 

Why Chronic Illness is a Bit Like Being in Prison

Bear with me with this one… I haven’t been sleeping well at all recently which means lots of midnight Netflix and crocheting sessions for me. My documentary of choice at the moment is a series about inmates in different American prisons/jails (there’s a difference, I’ve learnt!) and their experiences of being incarcerated. Not very light hearted, but I actually find ‘people watching’ fascinating. Plus I spent most of my career working with pupils who were ‘at risk of offending/reoffending’, so it’s doubly interesting for me.

But some of the stuff inmates were saying in interviews didn’t just resonate with me in terms of thinking about my ex-pupils. Now, clearly I do not have lots of gang tattoos, or a gang for that matter, unless you count my crocheted animal menagerie, but I did find myself empathising with them because of the situation I find myself in- being chronically ill. Here’s how having a chronic illness is a little bit like being in prison…:

You have a long wait and a bunch of ‘hearings’.

Prisoners have to jump through the hoops of the justice system, and a lot of that time is spent waiting for a 10 minute hearing, to then spend more time waiting. Which is a lot like being on the waiting list of hospital tests and doctors’ appointments. I’m talking about when you’re home all day every day feeling awful from chronic illness, not managing to maintain most of your lifestyle but having an upset stomach or migraines sometimes. Your life is on hold until the next ‘bit’.

Then someone tells you your fate and you get sentenced.

After all this too-in and fro-ing, someone hopefully has the balls to turn around and tell you how long you’re going to be dealing with the illness for i.e. your sentence. It could be a few months, a few years or life. The one advantage of being a prisoner is that they usually can’t wait to tell you the verdict once they have one, whereas with chronic illness there’s a lot of beating around the bush and reading between the lines involved- doctors don’t like committing to things unless they’re 100% sure, which doesn’t happen often.

You might get ‘not guilty’ and get to walk free.

Yep, you’ve got a long term condition, it might be forever, but take your meds and you’ll be able to get on with your life, except maybe for a couple of periods of illness.

You could get probation.

Which means you’re not out of the woods. You’ve had a scare e,g a heart attack, but make some lifestyle choices, take some meds and reflect on how lucky you’ve been and you can eventually get back to your life before with some changes. Except your offence will be taken into account in any future cases e.g. if you have another heart attack, you will probably end up doing some jail time.

Jail Time

Jail is where you go where you’ve either not been fully charged or you’ve got a really short sentence not worth sending you to prison for (according to my documentary). You’re sick for a little while, you might have to go to hospital a lot and have some nasty treatments, but once you’re done you can say you’ve ‘beaten’ the illness. Sometimes illnesses come back (reoffend) and you have to do a similar thing again.

You might get a long sentence.

Of a few years or even life. Except it’s not ‘without parole’, so you’re secretly hoping that someone somewhere has made a massive mistake and will release you from prison and say you don’t actually have the illness or that it’s made some dramatic improvements. Or that medical science progresses and gives you a new treatment. It’s a long shot, but, just like the prisoners, you have to have something to feel hopeful about to get you out of bed. And, just like them, you make the most with what you’ve got and take each day as it comes.

Or you could get Life Without Parole.

One guy said ‘I’m never getting out of here, so what’s the point in trying? Why bother being good when it won’t make any difference to my sentence?’ I found myself agreeing (I hear you bro’, in my best gangster accent!). Some of us are stuck with our illnesses forever. They won’t get better. It’s bloody miserable thinking that ‘this could be it’. In my case, I doubt medical science will come up with anything while I’m still alive since the current treatment is archaic enough already it would take miracles to come up with something life altering. Plus no one cares because it’s rare. You have to watch the ‘free world from your window’, which is what another inmate was doing. He watched cars on the highway all day.

Death Penalty.

Obviously we don’t have this in the UK. But it was weird- a lot of the death row inmates said they hated being there, they had no quality of life, they spent 23 hours out of 24 in a cell by themselves with next to no possessions or human interaction, but they still wanted to avoid the death penalty and live like that for the rest of their lives. I have some human interaction, but I spend a lot of time by myself during the day, can’t go out myself and don’t have a lot of freedom because my illness limits me so much. It’s hard work every day, but I still want to avoid the ‘death penalty’ too.

You get a lot of visitors to start off with.

The inmates found that a lot of their families came less and less frequently the longer they were in prison for. They didn’t really know why, it just happened. It obviously puts a strain on the family outside of prison too. There are a few core individuals for each inmate who keep coming, but very few had regular visitors once they’d been there 5 years.

People take sides.

Inmates found that people either fell into the ‘we think you’re guilty/innocent’ camps. There was no in between. It kind of is the same with chronic illness, since a lot of people seem to think that chronic illness is something you inflict upon yourself, which it isn’t.

You suddenly start to appreciate little things.

One inmate got moved from max security to a slightly lower level. He’d been in isolation for 10 years and finally was able to have a roommate and access to the commissary. He loved drinking ice water because he hadn’t had that option in max security. I’m kind of the same with some things now. I like being able to make my own cup of tea because it’s one of the few things I can actually do for myself. And I like tea. I feel a sense of achievement from finishing something I crochet in a way I wouldn’t have done before.

You don’t have any choice but to keep getting up every day.

They get up to the same routine. I get up to the same routine. There’s no spontaneity. You feel trapped. You get communications from people out in the real world and wish you were there too. Thankfully, I don’t have a prison warden breathing down my neck. And I don’t have to sleep in a dorm.

Here’s the thing though. What I have learnt from this programme is the fact that you can actually just be in the wrong place at the wrong time. People make bad choices and end up in prison e.g. did you know that if a murder happens at the same time as you’re committing a crime, even if you had nothing to do with it, you end up being charged for that murder too? So one woman was robbing a shop to feed her kid and someone else came and shot the owner. He got away, she didn’t. She got charged for murder. You can equally have an accident which leaves you unable to walk because you decided to do cliff diving. And, let’s face it, everyone is kind of bending the ‘law’ to suit themselves, so it’s just a matter of time before you get caught e.g people smoke, drink alcohol or eat unhealthily but because they haven’t had to worry about the consequences of it yet, they don’t- everyone assumes it’ll happen to someone else.

But illness doesn’t happen to ‘someone else’. It happens to a lot of people, it just depends on the degree and the sentence. It’s great if your illness is short lived, like a year or two even (even if it is scary), but for those of us serving long sentences, it doesn’t get any easier every day just because we’ve been serving time for it longer. However, there are some inmates and some people with chronic illness who are determined to make the best of what they’ve got and find other ways of enjoying the freedoms they do have. Every little counts.

If I suddenly start expressing a need for gold teeth or trading food stuffs for favours with people then someone needs to at least try and bail me out. For now, I’ll keep getting up every day, watching the world via social media or my window and crocheting my gang members.

So I’m 30… 30 things before 30

I had my 30th birthday in May, so it’s time to see how I got on with my 30 things before 30 list. Mine was never as ‘exciting’ as other people’s travel and adventure plans, but I wrote it after I had to stop working due to illness and needed something fun to focus on. I haven’t managed to complete all of it, mostly because of illness, but I think I’ve given it a good go!

1. Ride a horse. This isn’t physically possible for me to do anymore. However, a friend came to me in a dream and said that I should ride a carousel horse instead. So the next time I see a carousel, I shall ride a horse!

2. Go on a spa day. Again, not possible for me to do anymore. But a friend came over and did my nails for me (thank you!) which was pretty close and a nice treat! 🙂

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3. Make a wearable piece of clothing. I have made headbands and worn them out in public.


4. Volunteer for a charity. I’ve done a lot of this in the past year, reindeer post for Post Pals, volunteering at the endocrine conference for Addison’s UK and setting up my own charity-based venture on my Out With Animals blog.


5. Go to a Christmas Market that isn’t just the one in Birmingham. I didn’t get out of the Midlands to a Christmas market, but I went to ones in Coventry, Solihull and Blenheim Palace as well as the one in Birmingham.


6. Sell at a craft fayre. Logistically, this wasn’t possible. However, I send the animals I make to people and have had a few requests for specific animals or gifts from friends. So I’m going to say I’ve completed it.

7. Go see a musical and stay the night in London. I’ve been to two concerts in the Royal Albert Hall but we didn’t stay over (too complicated). We had a lovely time!


8. Be a tourist in London. We were kind of touristy around the Albert Hall, but that was as much of a tourist as I got! Maybe sometime in the future I’ll manage this, but I’m not well enough right now.

9. Go for a picnic in a park or forest. We’ve done this a few times, although only got as far as eating ice cream in a forest! There’s something nice about picnics in the park.


10. Go punting. A friend offered to take me, but we couldn’t find a date that suited. It would be cool though!

11. Do yoga outside. I regularly do my physio outside. It’s not much and not a full yoga class but it’s a lovely way to start the day.

12. Make brioche. I’m now on a low carb diet, which means eating brioche isn’t the best idea. A friend and I were going to make it but it requires setting aside a few days for proofing and takes more effort than chucking ingredients in a bowl and mixing them, which I struggle to manage as it is!

13. Sleep in a yurt. This nearly happened for a friend’s hen party, but I wasn’t well enough to go.

14. Learn to play Sonata Pathetique mvt II all the way through. I can do this! (Kind of!)


15. Make my own fruit juice for breakfast. Mango and peach- it was good!

16. Practise Spanish in a real situation. I’ve chatted briefly in Spanish, taken part in Instagram photo challenges and done a tiny amount of reading. Plus I’ve watched a few tv programmes with Spanish in!

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17. Go/watch ice skating. This is another ‘not possible’ ones.

18. Read the Harry Potter books in order. 


19. Make mojito ice lollies. I can’t tolerate alcohol right now so another one I couldn’t do.

20. Learn how to crochet. This was something I was certain I couldn’t do. But now I love it! I mainly make animals for my Out with Animals blog or blankets.


21. Re read a book in French. Reading is hard for me at the moment. But I did read half of Twilight in French and I’m most of the way through a satire book a friend bought me for my birthday. So two halves makes a whole book right?

22. Host a raclette party. We hosted lots of them!


23. Listen to BBC proms concerts. I really enjoyed doing that last summer so plan to do the same again this year 🙂

24. Record a song on GarageBand/logic. I purposefully haven’t done this. I know how to do it, I used to teach it. I can play many pop songs on many instruments to record it in. But I think it would make me feel sad that I’m not a teacher or a musician anymore and I don’t feel like I need to prove my ability to do it that much.

25. Play Pokemon Go. I’m not good at it but I’ve played!

26. Eat Tapas. I’ve done this a few times now. And my brother now owns and cooks in a Tapas bar! 


27. Visit a castle. We visited a lot in Wales. This one is my favourite.


28. Go to the seaside/beach and paddle. We nearly did this, but the weather was tornado like so we cancelled. I’m going to Devon in the summer though so hopefully will manage a paddle then!

29. Play in a band rehearsal. I very briefly played the triangle at a band reunion event, but that’s as far as I got. I did send Elgar the Elephant to help out on my behalf though…


30. Go to a carol service. I went to one in symphony hall. It was lovely!

Like I said in my previous updates, I’ve given myself a purple rating for ones which I now can’t do. A bit like what I used to give gcse kids if they weren’t meeting their target for reasons outside of their control. So with everything considered, I think I’ve done pretty well!

The final tally stands at: 5 not completed, 1 part completed, 21 completed and 3 purple/not able to complete. 

I really enjoyed doing the challenge, and part of me wants to make another list to complete in the year coming. Obviously I won’t be 30 again, but it was a great way of thinking of some fun things I wanted to do or achieve and making sure that they actually happen. I’ll have a think about what can go on my next list!