‘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!

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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!

Third Time Lucky?

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

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

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

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

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

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

etc etc

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

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

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

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

ACTH Test Complete :)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I’m Finally Doing My Day Curve Test

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

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

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

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

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

Crochet & Mindfulness

I started knitting when I had to have a long time off work because my asthma was really unstable. I couldn’t walk around my house without numerous doses of ventolin and steroids a day, let alone teach music. But my brain was fine. It wasn’t like feeling poorly where all you want to do is watch daytime tv and snooze on the sofa. I was slowly being driven mad and getting really bored.

So I taught myself to knit so I had something to do while watching hours of daytime tv. And now, I also crochet. Difference being is my brain isn’t as ok now- now I have brain fog and concentration issues but I work around that. Crocheting also has the added bonus that I can do it while lying down!

One of the big things with my Adrenal Insufficiency is that I can get incredibly anxious over not a lot. And then I can’t sleep, which feeds the anxiety…. so I find crocheting gives me something to slow my anxious brain but isn’t too taxing, as long as I pick the right project. It means I have lots of things on the go constantly because then I can pick and choose.

Like I said, usually I crochet with the tv on. But more recently I’ve been trying something new. I’ve been practising mindfulness and meditation to help my anxiety anyway, but I thought why not combine two things I love doing?

Nowadays, we don’t really approach many things mindfully. We constantly have our phones out, or listen to music while walking or eat and watch TV. We don’t actually really ever settle to do one task and get absorbed fully in it. Our brains are constantly thinking of the next thing, and we don’t really enjoy being in the moment.

So crocheting mindfully means not doing it with the tv on. I’ve been doing it two ways: one way is where I approach it like meditation, where I concentrate solely on what I’m doing (more on that in a minute), or the other is where I want to give myself space to think about something specific but without getting emotionally involved in it e.g. My hands are busy which lets me see the facts rather than the emotion attached to the facts, which is what makes me anxious. If I feel overwhelmed, I switch to just the mindfulness option.

What does it actually mean though? It’s:

– paying attention to each stitch. If there’s a pattern or rhythm to it, I say the stitches in my head like Dec, single crochet, double crochet… it helps if it’s repetitive and I don’t have to consult a pattern

– looking at the colours. I love the blanket I’m working on (they’re best for mindfulness practice). So I like looking at the colours blending.

– I also like the feel of my current yarn. It’s really soft but chunky so it’s easy to hold but really tactile.

– I sometimes put on calming music from my Calm meditation app or definitely have my white noise machine on. So I tune into those sounds

– I try to match my breathing to what I’m doing. It kind of makes it musical if you’ve got a steady rhythm going and get your breathing to coordinate

– it’s about not getting frustrated if you make a mistake and have to rip it out. I’m not doing it to make progress in my project (well I kind of am too), I’m doing it because I love crocheting

– it doesn’t matter if I finish in the middle of a row. Another reason why blankets are good because you can pick them up and put them down again easily. It’s about removing the need to set targets and time limits, and just ‘being’.

There’s something a bit hypnotic about it. Some days I’m better at keeping my mind on the task, others my mind keeps wandering and I keep having to bring myself back. But that’s ok, because I’m recognising my mind wandering, which is almost as important as staying focussed is. I still like crocheting in front of the tv, but I also quite like the time I get to just crochet because I want to enjoy that specific time.

Being Kind to Myself

I’m a broken record I know, but I bloody hate tapering from stress dose to baseline. In one of my endocrine crying meltdowns which come from tapering last week I sobbed at my husband that I feel like all I do is taper for about 90% of my life because no sooner have I got to baseline, I get sick and have to stress dose again.

Tapering for me is really, really hard. My endo tells me it’s because I’m super sensitive to any changes to my dose, more so than the average person with adrenal insufficiency. So 2.5mg doesn’t impact on most people that much, but makes me feel like a heroin addict going through early withdrawal. Or like you’ve got flu. But for 90% of my life on top of the already terrible symptoms I have from having adrenal insufficiency in the first place. It’s not just physical symptoms, the mental ones which come with it are just as bad.

Tapering involves lowering your cortisol level through reducing your steroid dose. So you’re essentially gradually exposing yourself to low cortisol symptoms to try and get your body used to the baseline level you should be on. Low cortisol can make you incredibly anxious, depressed, guilty feeling, obsessive, suicidal, paranoid… It alters your mood.

One thing I get really, really stressed about when tapering is my diet. I follow a low carb diet to try to help my symptoms. But my body responds to low cortisol through tapering by making me eat every hour. I’m not hungry necessarily, I *need* to eat, otherwise I faint or end up in hospital. It’s a long story, but basically if I don’t eat what my body needs, even if it’s a temporary fix, I end up in hospital or back on a double dose- it’s lacking energy from missing cortisol, so it panics and makes me need to eat. But obviously eating so much makes me put on weight which doesn’t help my endocrine disorders. Which wouldn’t be a problem if it was only a few days a month, but because I spend so much time tapering, it’s actually a big problem.

This is further compounded by the fact that I had a very useless endo who told me my adrenal insufficiency was all in my head and I should stop eating because that was just me making excuses. Now if you know me, I do not make excuses. I’m about as stubborn as they come and lack of willpower or resilience is not me.

So I usually spend my time tapering arguing with myself as to whether I should be eating, what I should be eating, panicking that I’ll put on weight, which then uses up more cortisol, which causes more physical and mental symptoms, which makes me feel worse, which means I need to eat more. However, this time, for some reason, I’ve been feeling less guilty about it. If I’ve needed to eat, I’ve eaten, even if it means eating carbs. Because I usually feel really nauseous and have a really terrible stomach ache when tapering, sometimes I can only really stomach coke and ready salted crisps. Which isn’t healthy, but this time I seemed to have figured that coke and crisps is better than coma or death.

Maybe it’s my new endo, or finally the counselling I’ve had since that endo tried to kill me is kicking in, but I’m realising that I’m 3 and a half years into diagnosis and my endo team still can’t figure me out. If they can’t with all their fancy professor titles and combined PHDs then how can they blame me if I eat a packet of crisps to try to avoid a hospital admission? Yeah it’s not a long term solution and it doesn’t help with weight gain, but equally, they haven’t come up with anything better yet. It’s not like I’m an unhealthy person- I’ve done everything they tell me to, even when it makes me feel truly terrible. Like reducing my steroid dose- I feel magic in comparison on even just a slight increase of what I’m on now, which I could so easily do if I wanted to, but I don’t because they don’t want me to.

This time I’ve been a lot more kind to myself and it’s made it all a bit more bearable. Hopefully I can keep this up for future times!

Emotions & Sealions

Everyone knows not to aggravate the pregnant lady for fear of hormonal wrath. And there’s enough memes going round about how women can’t believe they just cried for no reason in the supermarket and then came on their period and it all makes perfect sense. Emotions are psychological but they’re also managed by hormones and vice versa- an emotional response to something triggers a bunch of hormones and hormones can also alter your emotions.

Unsurprisingly, this makes it difficult as a person with adrenal insufficiency because we’re missing one of the big ones- the stress hormone, cortisol. Cortisol pretty much is the boss (or at least the boss which signals to other hormones and glands) of all hormones. And the adrenal gland actually makes about 90 hormones, but we only get to replace one. So bear all this in mind when reading this metaphor!

Hormones have a psychological and physical role. You hear of people seeing a red mist and not being able to control physically beating someone up under extreme stress. If you don’t make cortisol, your body is under constant extreme stress. But I guess it’s a hard one to explain unless you experience it.

Imagine this. You’re at one of those aquariums where you can see the sealions in their tank because there’s a big glass window and the top of the tank is above you. All of the sealions are sat on a rock, barking, and then they suddenly decide to plop into the pool, one by one. As they do that, the water level goes up and you start to get splashed a bit. With a jolt, you realise you know exactly what’s going to happen, you just can’t stop it from happening because it’s out of your control; the water’s going to come over the edge. You get that electrocuted ‘oh crap’ feeling you have when you think you’ve put your phone in the washing machine.

So your heart rate goes up, your stomach has plummeted and you feel like the air has been taken outof you. The last lion bellyflops in, just for good measure, and you’re drenched. You’ve literally been hit by a wall of water, a bit like the ice bucket challenge, and it makes your skin sting and gives you muscle cramps. Plus the little bastards like their water extra cold, so your temperature also changes really fast. Which makes you feel sick and shake a bit, like a shiver on the inside. Plus the water was heavy so you’ve now got a splitting headache and it got in your eyes so you have to keep blinking to try to focus them.

You’re getting over the initial response to the water and you can hear the bloody lions cackling and barking away. And suddenly you feel mad. Like really mad. But there’s no point in shouting at a sealion, you’d look like a right idiot having an emotional outburst so you try to keep your emotions in check. Except this makes your temperature go up because your blood feels like it’s boiling, and then you feel sick and dizzy for a whole different reason. And you suddenly feel like crying because there are people watching and it’s a horrible feeling with your mind racing trying to work out the best way to handle all the physical feelings going on as well as dealing with your emotions

So the best thing to do is to try to remove yourself from the spotlight and walk away. Except they’re still barking and it’s driving you mad and you’re struggling to not turn around and punch one of them in the face. Which is just a bad idea in general, you know that, but you can’t help it. Walk away. But when you start to walk away, you’re wearing jeans, which are now a million sizes too small and won’t move properly so you’ve got another thing to think about- walking away is not as easy when the bloody sealions are still laughing at you and it’s physically hard work. You kind of want to crumple into a heap. But, again, what a stupid reaction. It’s only water! And, your frustration is compounded further knowing you haven’t got any choice but to wait until your jeans dry because you have no other clothes. And that’ll take ages, no matter how many times somebody asks you if they’re dry yet, they’re not just going to miraculously go back to their original state within seconds. And they’ll be out of sorts for the rest of the day anyway, even once they have gotten rid of the water.

You do manage to walk away though and assess the damage. Some things you can stick under the hand dryer and get a bit of an improvement, but other things, like your jeans, are going to take a bit of time. But you don’t really feel like having to explain the humiliating story over and over and bring it all up so you feel it’s best to hide for the rest of the day.

Having an emotional response to something when you have adrenal insufficiency is pretty much exactly how I just described, even something which might seem quite minor. Every physical symptom from having cold water dumped on you happens (minus the cold water), and it happens that quickly and without much ability to control it. Sometimes you can see it coming and apply mindfulness or another technique to try to counteract the physical response which comes with the emotions, but you can’t always do that. Especially if someone picks a fight with you. The worst bit is, you actually can’t let it go or back down once you get to a certain point, like the jeans which are wet- it takes time for things to improve. Once your emotions have been dowsed in water, they don’t just suddenly dry up and you can carry on as normal.

Serious confrontation or arguments, or even constant minor conflict, can be potentially life threatening if not appropriately managed with extra cortisol (steroid). A ‘normal’ person can move on relatively quickly from seemingly minor things, whereas we can’t necessarily. It’s so difficult to manage, and while we appreciate that random hormonal outbursts are not ideal or pleasant to deal with from us, if you’d give the pregnant lady or hormonal PMS female a bit of leeway and compassion, then we almost definitely deserve the same, as there’s a lot going on underneath the surface 🙂

A bump with a badger

We had a run in with a badger while driving home yesterday. One decided to cross the road pretty much as we were driving on top of his patch of road, so he got a big clunk to the head and us a broken fog light.

I’d just been asking my husband to ‘drive nicely’ because driving fast around bends always makes me feel weird anyway, but it was also dark, which makes it worse. My train of thought went something along the lines of ‘oh well it’s a good job you’d slowed down because otherwise he (the badger) might have written the car off!’, whereas his was ‘if I’d been driving faster, I would have zoomed past the badger before he poked his head out’. Either way, the badger was pretty stupid, because my husband’s car is the noisiest, least subtle car on this planet. So he must have been deaf and blind to not hear the car coming a mile off!

There wasn’t much time for my husband to react to it to brake, which is why he got clunked on the head. So I immediately said ‘guess I’m taking more hydrocortisone then’. My husband didn’t really get why, so I asked him what his heart, mind and endocrine system were doing- pretty much everything would be racing and firing on all cylinders. Meaning I needed to rectify mine.

Adrenaline still works. So I still got the surge of adrenaline everyone else gets and the racing heart, shakes, sweating and sugar-high kind of feeling. It’s the bit that comes after which is weird. It’s a bit like someone pulling a magic carpet out from under Aladdin cartoon style- he floats for a second still and then crashes to the ground. Then I feel sick, dizzy, shaky, grumpy, sweaty and all my muscles start to cramp up.

You’ve got to think about the incident but also what comes later. The actual badger bit wasn’t that bad. I had some HC and felt mostly back to where I’d felt before. However, I think about the last 24 hours and I realise how much the badger messed with me. I did updose but I obviously didn’t get it right judging by what came next.

It took me ages to get to sleep. I managed to crochet a lot of a hat in this time. I needed the toilet every half an hour and needed to drink a lot in between. I had weird dreams. I found myself eating ready salted crisps in the middle of the night, which I only do when something is out of sync. I woke up feeling terrible a lot. I spent most of today feeling like I was up against some kind of deadline and having to work at top speed. Despite the fact I don’t have a job or anything I needed to do. I found myself getting emotional or upset about things that made me angry 5 years ago, and then not being able to let them go. I wanted to nap but couldn’t. You get the idea. All because of a badger!

That’s a bit unfair on the badger though. He’s probably feeling way worse than me! I didn’t get my dose right afterwards is the real reason, but funnily enough, my sick day rules don’t have a ‘if you hit a badger’ section. The reason for my weird day? Adrenaline. When the body can’t make cortisol, it floods the system with adrenaline to compensate and to keep you alive from the imaginary bear attacking you. Hence my ‘I have a deadline’ feeling and angry emotions today. But because my body doesn’t have anywhere to put the adrenaline i.e. No Bears in my living room, you get stuck into a ‘adrenaline- hang on there’s no cortisol- have some more adrenaline’ cycle, which is hard to break.

It’ll pass. It’s not the end of the world. I actually find the whole thing quite amusing. And neither of us were hurt even if the badger isn’t a very happy chappy right now!