I’m still here

It’s been a while since I’ve written a blog and I’ve had a few people/followers message and ask if I’m ok (thank you 🙂 )

A lot of the reason for being so quiet is one of the most painful things for me since dislocating my shoulder has been anything involving using my fingers, like typing on my phone or the computer (and I hate voice transcribing). Or even holding my phone hurts. And crochet did for a long time! Something to do with compressing nerves (or something), but with the whole covid thing, I couldn’t get it checked and it’s been slow healing. But I’m getting there now! Still a while before long blog posts though. And between pain, normal brain fog day to day stuff and trying to taper my steroids, I wasn’t really with it for a few months.

Which brings me to corona virus. It’s been extremely stressful for me. It’s been stressful for everyone but I also literally just had an adrenal crisis the week before we started getting daily briefings from our PM (ie it all got bad fast here) and I was still trying to heal my shoulder.

The additional stress came from our government and media essentially reassuring the general public by saying ‘it’s ok, everyone who dies tends to have an underlying health condition anyway’ and ‘if you’re healthy you can have a ventilator because we won’t be giving them to people who’ll probably die anyway, like the ones with health conditions’. The Prime Minister basically quoted Lord Farquaard from Shrek when he said ‘some of you will die, but that’s a sacrifice I’m willing to take’ (ok so what he actually said was ‘many more families will lose loved ones before their time’, but I didn’t find any of his speech reassuring)

Rationally, I know how the media hypes things up. But I’ve also had *so* many terrible experiences in hospital where people have almost killed me on a day when the NHS was normal, let alone in a pandemic. My worst fear in general is being unconscious or on a ventilator because I can’t advocate for myself if I’m unconscious… I’ve said before, there’s been discussions about me potentially having PTSD, and this definitely started to surface. Along with the fact that no one knows how to treat my adrenal insufficiency on a normal day, let alone with a new, deadly virus which no one has any experience in. Endocrinologists couldn’t agree on what to do, or even how much at risk we are, and there was so much conflicting advice but ultimately ending in ‘just don’t catch it’. It was a nightmare.

And, obviously, having AI, means stress affects me in a very bad way anyway. So I was pretty much trying to get through every minute of the day one minute at a time. Now there’s been some guidance and we’ve been told what to do, but it’s completely different from how I’d usually manage it, and it’s only just appeared in the last couple of weeks. Which is good to know but terrifying at the same time. Realistically, if I got it, I’d be in hospital. I need hospital for stupid things like opening the oven door and the heat getting me. Or a normal UTI. So I’m doing absolutely everything I can to avoid this virus.

So I’m still here. I’m still extremely anxious but it’s a lot better since we’ve been on lockdown. Problem is, the schools are supposed to go back on the 1st June and my mum’s a headteacher. The current guidelines the government proposed mean it’s not safe for staff to be in school (and pupils) but they’re expected to get on with it. Plus lockdown just seemed to get lifted overnight and people are already forgetting things like social distancing. Lots of things which are making me more anxious again…

On the plus, I’m currently isolating at my parents house in a rural place. Which means I can go to a field or the fells nearby and not see anyone. With movement restrictions being lifted slightly, it meant I could get in the car yesterday and go to a common in the hills about 5 minutes away. It was the first time I’d been ‘out’ anywhere in 11 weeks and it made a huge difference mentally!

Everyone’s lives are on hold. But on top of the normal anxiety everyone has right now, I feel immense pressure to not get sick, even ‘normal’ sick, but especially not coronavirus sick.

This post has taken me about a week to write, with my slow typing so enough now. I hope everyone is keeping as well as they can be!

How to survive self isolation/quarantine

I’m a pro at this! I’ve spent a lot of time in isolation/quarantine in hospital, because if you’re admitted with diarrhoea of an unknown cause, they quarantine you while they wait on test results and isolate you if you’re contagious. The longest was 2 weeks and the only person allowed to visit was my husband. I tend to get put in a room by myself with a hospital bed and a toilet, and that’s it. Once I didn’t have a tv, the WiFi was very patchy and blocked half the stuff (definitely no streaming) and I didn’t have any 4g. And I was in that room for a week! Because I was waiting on test results, I didn’t even feel that ill so you can imagine how bored I got. Plus hospital food isn’t great. It was a little bit like being in jail… Another side of it is I spend all day by myself at home and don’t leave the house much, which is basically self isolating!

So isolation at home with WiFi, decent food and different rooms should be a breeze, right?! Yes and no. It’s still going to be annoying, whichever way you look at it. And the worst thing about isolation is your own head. It definitely makes things out to be a lot worse than they actually are, mostly because you haven’t chosen to be in that circumstance and you ruminate on that. Here’s what’s worked for me in the past:

Get some entertainment sorted. People spend half their life telling me ‘it must be great being able to sit around watching Netflix all day because you’re sick while we all work’. Well now’s your chance to do just that! And you’ll probably realise it’s not as exciting as it seems after one day. But the best thing to do is have a range of stuff to do. I don’t watch Netflix all day. Sometimes I switch it up and watch amazon prime 😉 Different things to entertain you can include: TV series, listening to podcasts or audio books, reading, comic books. There are lots of free podcasts but your local library might also have free audio books and e books you can access via an app (mine does).

Find some other activities to do. If you’re not actually feeling ill, make this your time to learn something new or do a hobby you’ve always wanted to do! This is exactly why I learnt how to knit and crochet- I didn’t want my brain to waste away while watching Netflix. And I can take it with me when I’m in quarantine. Obviously you might need materials to do something so a bit of forward planning might be involved. But there are lots of things you can learn via YouTube. Or, do things like colouring, drawing, baking cakes, learn a language… I recently discovered that the open university has lots of free courses online and there are lots on a site called FutureLearn.

Get up and get dressed. Getting dressed just makes you feel better in general and like there’s a purpose to the day. Sitting around in your pjs might seem fun for the first 24 hours but then you just start to feel a bit fed up with life. I put on make up and jewellery most days even if I’m not leaving the house. It just makes me feel better! If I don’t feel like doing these things, I know I must be feeling poorly!

Have a routine. This is easy in hospital because everything is done at the same time. Although the frustrating thing is, it’s all done on someone’s else’s terms/when they choose. The good thing about being at home is you can choose your routine. Eat meals at the same time every day, have a cup of tea at a similar time, watch something on tv or plan an activity at a specific time. It doesn’t have to be a lot, just little things to focus on in the day.

Make the most of social media/technology. Scrolling aimlessly through social media for hours is always a bad idea. Take it from experience. You look at it and think ‘everyone else’s lives are amazing’ even if you’re the most grounded person in the world. And now it’s all about ways you’re going to catch the coronavirus and die! But social media can be a way of keeping in contact with people. I regularly just barge into Twitter debates! Or, message your friends you’ve not had time to catch up with. Use FaceTime. Write some letters or cards, or even make your own so it gives you something to do activity wise too.

Find something relaxing. Journal or meditate. I’ve never really got into journalling but I meditate every day. When you’re locked away by yourself, your brain or ruminating mind is your own worst enemy. So having a ‘go to’ stress reliever when you start to feel negative or anxious is a really good idea. Doesn’t have to be something like meditation, could be something repetitive like throwing a ball or crochet- something you can do easily to take your mind off stuff.

Have some good snacks. Yeah, you can survive if you’ve got your mountain of dried pasta and toilet roll, but the highlight of my day being in quarantine is food times. Don’t underestimate the power of a good biscuit to brighten your day!

Do some exercise. You can’t sit around and eat all day and not expect to put any weight on, especially if you had an active lifestyle before. I’m usually in one room so would end up doing laps of it for something to do. Or bed yoga (it’s a yoga you can do lying in bed, google it!). There are lots of exercises you can do from your living room via YouTube or other streaming services. Some gyms even have remote access and video sessions.

Change location. This is easy if you have the entire house to self isolate, not so easy if you’re stuck in one room. But just moving around the room makes it less hard on your brain. For example, I always sit in the chair for meals when I’m hospital. There’s usually a chair for visitors so I put that by the window or in a different place in the room and every now and then go sit there for a ‘change of scenery’. Sounds really basic (and stupid) but it really does help with cabin fever.

Keep your area tidy. As easy as it is to let magazines pile up on the floor (or whatever), keeping your space tidy helps your brain. It also gives you something to do!

Accept that you will cry/meltdown at some point. Particularly if you have to spend a long time with the same person/people. It’s going to happen. You will probably think about smothering someone in their sleep a few times. For me, it’s the elderly who shout ‘help me!’ every 30 seconds all night when they’re sundowning due to Alzheimer’s. Rationally, I know they can’t help it and I feel terrible for it, but it drives me mad when it’s been 8 hours and I can’t remove myself from the situation. It’s ok to cry or have a strop, it’s going to happen. Obviously try to not get stressed out by doing something above but if it all gets a bit much, sometimes a good cry can help! (And murder is illegal, remember 😉 )

Those are my tips for surviving quarantine or self isolation. But, on a chronic illness awareness point, remember your self isolation or quarantine is short lived. You will get to go back to your lives, for some of us with chronic illnesses, we kind of social distance and self isolate every day because our illness limits our everyday activities so much. We’re not immune to feelings of isolation or loneliness or our mental health suffering just because we’re ‘used to it’. In fact, because we have no end date on our quarantine, it’s sometimes a lot worse. I’m hoping that some people might be able to empathise more with people like me after this is all over!

Stay safe and do what you have to do to avoid coronavirus.

Reality Check

I have to go stay with my parents for 2 weeks because there’ll be no one here to look after me while my husband is away with work. The last time I stayed there, I ended up on a 24 hour hospital admission because I got an infection and needed IV steroids and antibiotics for my adrenal insufficiency. I’m usually a super organised person anyway and have a gazillion back up plans for most eventualities, but I thought I’d send my parents an email with a refresher on where to find things like my emergency injection, my info pack for when no one knows how to treat me if I’m unconscious, and what to say to an ambulance dispatch.

And then it kind of hit me how crazy it all is. I’m pretty used to dealing with it because it’s my every day life. But I kind of forget how odd it is for the average human being to think about, considering it’s a lot of ‘death’ talk. I was saying things like:

– if unconscious I need X and you might have to argue for it

– the ambulance need to put it on the same call out speed as a heart attack

– if doctors don’t know what to do, it’s in the info pack

Arguing for meds? Doctors not knowing what to do? Those kind of things shouldn’t even come into it. Most people have an emergency and they get the luxury of being able to concentrate fully on not dying, but I have to prep people looking after me with how to best argue with the keepers of the drugs and supposed medical expertise to make sure they don’t kill me through ignorance/lack of knowledge/arrogance.

And the thing is, this isn’t me on some kind of Doomsday Prepper escapade, running drills as to who can draw up and administer my injection the fastest. It’s not a hypothetical scenario. This is based on experiences I’ve had where I’ve needed to argue, where the ambulance has triaged me wrong and where doctors don’t actually know what to do so I’ve had to sort it out. All while trying to keep alive.

I tend to say ‘it’s fine though because I’ve always been able to sort myself out’ to try to reassure people, because it tends to freak people out. It still freaks my husband out, and he’s done it with me a lot of times, but he’s still not used to it really. Which puts a lot of pressure on me to a) keep conscious and calm b) keep on top of what the doctors are doing. I had to learn pretty quickly to keep calm and detach myself from it all, otherwise things would not end well.

I’m not a superhuman though. I might seem like I’m fine when I’m sitting up and talking with a cortisol level which says I should be in a coma, but there is going to be a time when I won’t be conscious and I’ll have to rely on other people. Like a car accident. Or a stomach bug. So it’s good to have plans in place to make it as unstressful as possible on other people.

But it’s still weird, right? There’s a pretty long list of things that might kill me every day, which are surprisingly mundane in terms of life events, and then there’s my plans to help prevent that. I decided a while ago that I wasn’t going to worry about all these little things because it just wastes cortisol I don’t have (and could therefore accelerate any potential death outcome, the irony) but also because everyone has to die at some point! The advantage I do have over other people is that I *do* have plans in place for those life things which other people might not have thought of. Eg car accidents. Severe illness from something ‘normal’ like flu. I also have the advantage of knowing how our healthcare system works so know how to and when to seek help. I have access to a lot of varied (prescribed) drugs and how I can best use them. I know how to read between the lines of doctor speak and know when they’re lying through their teeth or when they know what they’re on about. I can advocate for myself. I’ve got more practical, first hand knowledge in medical emergencies than a lot of junior doctors do. In summary, if there’s ever a zombie apocalypse, you want me in your underground shelter!

So while giving my parents instructions as to how to stop me from dying on their watch was a bit of a reality check for me in terms of how desensitised I’ve got to it all, it also was a reminder about how I do a pretty good job of keeping myself alive despite the complexities of my illness.

*touch wood* 😉

‘And that’s ok’

One of the things that many of us with long term chronic illnesses struggle with is you don’t get a break. Particularly if you have a complex illness which needs constant managing, you can’t just take your medications in the morning and get on with life. Your time is consumed with keeping an eye on your illness all day every day. It’s a bit like having a small child.

Also a bit like being a parent, there are many people who seem to think they know how to do things better than the way you’re doing it and offer unsolicited advice. Add that to everything you ‘should’ be doing as instructed by your doctors along with the expectations you set yourself, it can feel pretty overwhelming. But being as healthy as you can within your limits isn’t easy and sometimes no matter what you do or how you manage it, you either get it wrong or something throws you a curveball.

And that’s ok.

This is my new mantra I’ve been trying to adopt. There’s a huge difference between rationally knowing something and your body knowing something. Rationally, I’ve been able to tell you for months/years why it’s ok if things go wrong, but actually feeling and knowing that in my body is relatively new. I started trying to do this over a year ago in the summer when I was in and out of hospital all the time and feeling like an absolute failure because of it. But then I realised as I had yet another group of consultants and their regs (what seemed a bit too cheerfully!) debating all of the rare conditions I could potentially have which could kill me, that even the ‘experts’ didn’t have a clue what was going on either. And we largely still don’t!

And that’s ok.

Since I’ve been reinforcing this to myself, things have got a bit easier, mentally at the very least. But also from a managing my day to day symptoms point of view, it’s a lot easier to try something new or push my limits a bit when I don’t have the black cloud of ‘you’re an idiot if you get it wrong’ hanging over my head.

Sometimes I need to go to hospital and get IVs. Doesn’t always matter what happened for me to need them, sometimes I just need them. And that’s ok.

I track my weight every day, which might seem a bit extreme. But no one would believe me when I said it goes up and down depending on how much my body struggles rather than what I’m eating (or not eating). Sometimes I can put on 2kg overnight. And that’s ok.

Sometimes I need to increase my steroids or updose and I might not know why straight away, but my gut instinct is actually pretty good. And that’s ok.

It’s 4am and I’m writing a blog post because I can’t sleep and I’ve been awake since 2.30am. Before, I’d have stressed out about not being asleep but if I need to rest or sleep during the day tomorrow, I’ll do that. And that’s ok.

Sometimes I need to eat random things all day, other days I eat very little. Im trying to practise eating intuitively. And that’s ok.

There are lots of other things but you get the idea. When I catch myself starting to get into a cycle of ‘yeah but if I do this then that might happen’ or ‘if I need to eat more carbs then I’ll put more weight on’, I stop myself and say ‘and that’s ok’. It’s taken a long time, but I’m starting to feel like it’s working.

Willpower or self discipline isn’t a problem for me. If anything, I’m too strict on myself. So I’m pretty proud of the fact that I’m starting to see that it’s ok to get it wrong. Being ill isn’t my fault, there’s only so much control I have over how my health is and I’m doing all I can, and sometimes things happen for no reason at all.

And that’s ok.

I had a bath!

Why is this exciting? Because I haven’t been able to have a bath in about 4 years. Obviously I’ve washed, I’ve not been unclean! But one of the things I used to really like was a bath and the last time I had one I ended up on hospital.

Having a bath was a problem for me because:

– the heat would lower my cortisol fast. Heat in general uses cortisol quicker in anyone eg warm weather, but when you replace it with pills, it gets tricky. And you can’t really justify updosing just so you can have a bath!

– getting out of the bath from hot to cold would ‘shock’ my system, depleting even more cortisol

– either the initial heat or changes in temperature would make me tachycardic which gave me a whole bunch of problems that would last hours

– physically getting in and out of the bath changed my blood pressure too dramatically and it would take ages to settle

– heat often gave me hypos

– getting in and out of the bath was dangerous because of the risk of fracturing my wrists or slipping

– my general pain level meant I couldn’t get in and out of the bath

– it took too long to recover afterwards.

Simple solution? Don’t have baths.

But when you have a chronic illness, you really miss the normal stuff. It’s like when you’ve had something like the flu or a stomach bug and you’re desperate to go back to eating your normal food and resume your normal activities but you don’t want to push your luck too much. Except it’s all the time. When you’re constantly making sacrifices or compromises or saying no to things you want to do, suddenly really normal things like having a bath are actually quite exciting. It was a no brainer- if baths mean going to hospital, obviously I won’t have one. But if there’s a way that I can do something normal, then it’s worth getting excited about.

Why can I suddenly have a bath when I couldn’t before? A lot of ‘planning’ and small changes. All of those problems still exist, just I’ve done a lot of work in other areas which have a positive impact on my ability to be able to cope with a bath:

– a lot of my issues were to do with extreme changes/responses to temperature. I’ve done a lot of research and work into how I can put my adrenal system under less pressure during the day, right down to the type of food I eat. Before, having a bath was a major stress on my body, now it’s still a problem but my body can deal with it slightly better

– I got in the bath early on so I could control the temperature a lot easier

– I made sure I had it after I’d eaten, but not too close to after I’d eaten (digesting food and bath would be too much pressure on my adrenal system)

– I have prophylactic rehydration drinks now so dehydration was less of a risk

– I’ve practised a lot how to safely use my hands and wrists to move around so that I don’t fracture things (or so I stand as little chance as possible)

– I’m on a stress dose after a cold and I’m tapering, so I actually have a little bit of extra cortisol I can afford to burn away a bit. I might not be able to have baths on my baseline but we shall see

– my pain is better controlled so I can get in and out a bit easier

All of that meant that I had a bath and I didn’t need to go to hospital! It might seem like a dull thing for normal people but for me it’s a pretty huge achievement and a step closer to doing normal things other people take for granted.

Having said that, it’s currently 2am and I’m awake writing a blog post. Which could be a knock on effect of having a bath, but could equally just be a case of that’s what my body is doing today. I won’t know until I try again though, so for now, I’m feeling positive about the fact that I could have a bath 🙂

How a trip to the post office ended in hospital

I’m pretty annoyed about this, because I was doing reasonably well beforehand. I’d been bragging about how I’d got a cold and hadn’t ended up in hospital! That never happens! And I’d been managing well on my baseline at the same time, which also never happens. I was feeling like all my hard work was paying off.

But that kind of goes to show how volatile adrenal insufficiency is. Because I’d had a cold, I’d been doing my BP, HR, temperature and blood sugar readings every day properly, just to be sure. Normally I only do them if I feel weird. So I knew in the morning I was fine numbers wise. I needed to go the post office counter in the pharmacy so I went over the road on my scooter because I didn’t want to push my luck too much- I had a cold after all, I didn’t need to exacerbate things by overdoing it.

Then it started to go wrong. The post office employee was decidedly not friendly and was really rude from the get go. Long story short, he expected me to be a mind reader and know how he specifically wanted something doing, which I agreed to do for him next time, and asked him politely to do it the other way this time. Instead of just agreeing back, he kept lecturing me about it, wouldn’t give me my post back so I could do what he wanted and try again, but equally wouldn’t let me pay for it. He got progressively more and more rude and shouted at me until other staff intervened and he still wouldn’t do it.

Basically, he was just being awkward. My point was a more polite version of ‘give me my post back, or let me pay for it, but either way stop going on about it’. Annoying, right? The normal human body sets off a series of reactions when you start to get irritated or angry. Your fight or flight system gets triggered, flooding your system with many chemicals including cortisol and adrenaline, which makes your heart rate increase and your senses heighten. You might feel a bit shaky or wired up. In doing so, your body starts to divert energy away from ‘background’ stuff like digesting your food or fighting off your cold and puts it into gearing up for a fight. Or because my body doesn’t function very well to start with, my background things were standing up, having a conversation and trying to avoid my temperature going up because I was wearing a coat indoors.

I started sweating and shaking and feeling like I was going to pass out and kept saying I needed him to finish because I was struggling. I rested my arms and my head on the counter and he still ploughed on with his rant. Eventually I couldn’t cope anymore so I walked over to the chairs, sat down and promptly burst into tears. Which might seem like an overreaction, but by now I had the same amount of hormones zipping around me uncontrollably as a woman in active labour has. And it was either cry or pass out. Still not getting the point, he kept shouting at me because I hadn’t paid and I kept saying he needed to leave me alone.

I use the pharmacy as a place to do my rehab and physio. Sometimes I walk, sit and rest, sometimes I scooter, sit and rest. They all know I do that. It means I don’t isolate myself, it helps my physical health and it’s a ‘safe’ place to do it since people in there know me and can help me medically if it all goes wrong.

Which it did! One of the pharmacists stepped in, told him to back off and sat with me while I tried taking oral hydrocortisone. It didn’t do a lot. We went into a treatment room and checked my blood pressure which was ridiculously high so I took some more. We waited a bit longer and my BP and heart rate were still high so I rang 999 and injected. Nothing I did made it go down.

The paramedics arrived and we went to hospital. After another 200mg of IV HC, things started going back down to a bit more normal. But I was kept in overnight to make sure I didn’t have a lurking infection and because things weren’t quite right even if they’d improved.

It’s a week later and I’m still feeling the aftermath of this. All because some bloke was having a bad day and wanted to put his irritation onto me. I had 400mg HC total which I shouldn’t have needed, I had to spend a night in hospital and got little sleep, I have to taper my oral dose… But also, from a mental point of view, the pharmacy isn’t a ‘safe’ place anymore for me to work on my health. It took me a week to go back there and I was so anxious about it. But who wouldn’t be, after being berated in public, shouted at for doing nothing wrong and crying in public? Not to mention calling an ambulance, dangerously high blood pressure and a trip to hospital.

It’s annoying because I can do everything in my power to keep on top of my illness but something someone else does can ruin all my hard work in seconds. I mean, I could just stay at home in my own bubble all the time, but that’s not living! Even without my medical condition, his behaviour was out of line though. And that’s what I find most frustrating about it. I’m really good at managing my illness and ‘predicting’ what might go wrong and mitigating against that. But there’s absolutely no way that I could have predicted going to the post office, doing something I’ve been doing most days for months with the same employee was going to end in blue lights and hospital.

How could it have ended better for me? If he’d not been shouting at me, which I don’t think is ever ok in customer roles anyway. If he’d listened to me when I’d said I was struggling. If he’d controlled his stress response even a fraction so as to avoid triggering my broken one into a meltdown. All things which were in his power to do, had he shown any kind of level of human compassion. I can do everything I can to keep myself as healthy as I can. But I can’t do anything about other people being idiots.

Oh, and if you were wondering, I did what the grumpy post office man told me to do and 2 of his colleagues have since told me that my original way was fine and that the grumpy man was just making a deal out of nothing. But you know, it’s not like his strop was damaging for my health or anything *rolls eyes*

Why Brexit Scares Me as a Chronically Ill Person

Brexit is looming (maybe, unless it’s delayed) and there are many stories in the press about medication shortages and disruption to food supplies. Some of it is undoubtedly scaremongering tactics, but some of it isn’t. And we’re obviously not going to know either way until it happens.

No one wants their medication supply interrupted. At the very best, it’s an inconvenience and bothersome symptoms will come back. But for people like me, it’s literally a matter of life or death.

There is a huge difference between not having a medication which keeps you healthy and one which could lead to death. People take many medications which prevent the potential of complications leading to death, ranging from tablets for high blood pressure to ones for depression. But for some of us, that one specific medication keeps us alive and we can’t miss a dose.

For example, I have asthma. If I don’t take my inhalers, my asthma will get worse, but I probably won’t die immediately from it. In the event of this medication being unavailable, I could be really diligent about avoiding my asthma triggers, stay indoors, not do any type of exercise, avoid stress… there are lots of things I could do to prevent an attack. If I did have an asthma attack but my inhalers weren’t available, I could go to hospital where I could be given something like a saline neb which wouldn’t cure it, but would help. Or I could be given an alternative treatment only available in hospital. Or even put on oxygen or intubated. If my heart stopped, I could be resuscitated.

(Can we all just pause for a second and recognise how absolutely ludicrous that I’m even writing this post and thinking about it? Regardless of whether you voted for brexit or not, the fact this is even a potential problem is stupid.)

I also have adrenal insufficiency. If I don’t take my hydrocortisone I will die. End of story. Nothing I do will prevent this, even if I didn’t get out of bed. If I go to the hospital and they don’t have it either, I will die. There isn’t an alternative I can be given. It doesn’t matter how much you try to resuscitate me if my heart stops, without that specific drug, I will die. The same applies for other endocrine illnesses like diabetes.

I’m sensing some people are reading and are rolling their eyes at my dramaticness or thinking it’s scaremongering. Firstly, that’s not an over dramatisation, it’s fact, secondly, here’s what I know (factually):

– this is one of the drugs which has been cited by doctors as a shortage drug in the event of no deal brexit

– guidelines issued to GPs say stockpiling of these drugs isn’t necessary because they’re written by people without knowledge of how important it is to people like me (hydrocortisone is used for many things and it’s not essential for life in the majority of cases. But it is for me)

– pharmacies have already had problems getting in this drug for me as it is from various suppliers, due to nationwide shortages

– the brands of hydrocortisone I can take have been at the centre of a court case because of them cutting a secret deal and trying to outprice each other on the market. It’s been in the news.

– currently I can only take 1 brand due to the way the compound is mixed, the fact I have to take 2.5mg doses and the NHS not prescribing anything less than a 10mg tablet. In other words, all brands except one can’t be split into quarters. So I’m already really limited.

Some people might also be thinking that the worst case scenario is that there’ll be a delay at customs, so it’ll be late but available. But I don’t have the luxury of delays, because missing just one dose can kill me. Here’s why medication supplies might be interrupted:

– customs slow things down meaning medication distribution to pharmacies is slower

– once they arrive in the U.K., they have to go to the wholesaler who then distributes to pharmacies and hospitals.

– wholesalers can prioritise where they send their medications to, but they’re going to prioritise hospitals first (this has already happened). And also, remember these are businesses so their ultimate goal is to make money, not keep people alive. What would you do if you knew something was going to be in short supply? Hike the price up! And likewise for the people exporting to us. So suddenly it could be a question of who can pay for medications. Hydrocortisone already costs £90 per box. I need 3 of those per month minimum.

– pharmacies have quotas (like rations) of what they can order. So they’re not necessarily allowed to order lots of boxes of the same thing. What if some pharmacies have more demand than others?

– then there’s logistics- if a lorry has been delayed at customs, it’s then not able to make a return trip as quickly to get more deliveries. And those kind of logistics have knock on effects which can take weeks to resolve

I don’t have weeks. And also consider the following; perhaps it’s too much disaster programmes on Netflix, but I know how it goes down in a real crisis. Doctors will save the most amount of people with the fewest medications possible. Like a game of chess. I require my meds every 6 hours but, like I said, hydrocortisone is used for lots of things from allergic reactions to respiratory problems. In a lot of cases, people only require short courses of it and will resume normal life but I’ll need it long term. If you can save 7 people with a week’s worth of my drugs but sacrifice me, what would you do? Clearly you opt to treat the 7 people over one person. It’s obvious. But it’s not great for me, because without that drug, it’s a death sentence.

So yes, it might all be fine and the disruption might be minimal. But if it’s not? How would you feel if you knew that missing one dose could be fatal? And that’s just the drug which keeps me alive, I take 18 other ones each day which alleviate my otherwise debilitating symptoms. What about all of those? They won’t kill me straight away if I don’t take them, so I’m less worried. But, again, how stupid is it that I’m being forced into a position of thinking that?

Anyway, here’s what I’ve been doing about it, because I realise I might have freaked some people out and there are ways I can prepare:

– I contacted my GP to put in place a 2 month supply I can keep at home and a 6 month prescriptions order which can go to the pharmacy (this is what Addisons U.K. recommend) . 2 months at home should cover me for any supply disruptions and 6 months advance on prescriptions means that the pharmacy can order in advance which will help them with their quota- they’ve got the order from the doctor, it’s not just a vague request

– I’ve already got some backups at home just in case the GP has issues sorting this out for me. The issue being what I mentioned above in that it’s not a problem for most people not having hydrocortisone but it is for me. The GP surgery can only do what they’ve been authorised to do by the higher up people

– avoiding Brexit talk and drama where I can so I don’t get stressed out by it

– making sure I don’t have anything ‘big’ planned around that time so that I can keep as well as possible (ie leaving the house to do ‘life’ things means increasing my dose which I won’t necessarily have the luxury of doing if there are supply issues)

I’m really practical about having AI and all of it’s near-death encounters it has thrown at me, so I wouldn’t be saying this just to have a dig at people who voted leave. I’m also intelligent enough to be able to check sources of publications for reliability and fact checking. Aside from that, this is what the big charities for my illness have told us patients. I’d be stupid to ignore their advice.

And this is just me, it’s a bigger problem than that. People wouldn’t have access to cancer treatments, the flu vaccine won’t be as readily available and this year’s flu is supposed to be tough, and services which are usually stressed over winter are going to face bigger problems if people with long term health conditions don’t have access to their meds.

If I haven’t managed to convince you that there’s a reason for me to feel scared about brexit then I doubt I ever will. And the whole ‘it might get delayed’ thing doesn’t help because it just shows how incompetent our country seems to be in organising anything. But whichever way you look at it, I’d like to hope that 52% of the country wouldn’t have voted leave if they’d known that there was the potential of people dying because of politics.

I’ll leave you with this tweet:

Weight Loss: It’s Not Always About Resilience

The general consensus when doctors look at an overweight patient who’s saying ‘I’ve tried that, it didn’t work’ is that the patient is either lying, not done what they’ve been told to, or been cheating on their diet perhaps without realising it. Usually I ignore most doctors who give me a lecture on losing weight because they don’t know me and my medical history, but I saw my endo a couple of weeks ago, and he basically gave me the same lecture, despite knowing me.

The lecture always goes ‘write down everything you eat, cut out calories, don’t snack between meals, eat less fat, eat low GI foods, eat more vegetables, don’t eat processed foods, have a drink instead’. Makes sense right? To me, this is ridiculously obvious. I’ve done my research, I know this stuff. And I’ve been doing it, but it doesn’t work for me.

In actual fact, I have been losing weight. I’ve lost 1.5 stone so far. But no one seems to acknowledge this at appointments. That’s a lot of weight to lose! But it doesn’t feel like it’s good enough because I’m still fat in their eyes. And I’ve not followed any of their advice, because it doesn’t work. It’s pretty demoralising.

I was trying to explain to him that resilience isn’t my problem. If it was just a case of ‘eat less and move more’ then I’d be back to my size 8 self I was before all of this. But it isn’t that simple and I need someone to help me work out why that doesn’t work for me. Someone like a doctor! But they all just assume I’m lying or haven’t tried hard enough.

I’ve got to the stage where I think I’m verging on giving myself an eating disorder, and that’s not me being flippant. I genuinely think my mental health is going to be at even more risk if I write down everything I eat. My reasons for this are:

– if you tell me to do something, I do it. And I don’t cheat. It’s like a compulsion- I *have* to do it. Even if it makes me more ill.

– I only eat when I feel like I’m going to pass out. I have hunger pangs all day (more on that later) but I only eat when I medically need to

– I hate eating now. I don’t get enjoyment from it because I have an internal argument about whether ‘I really need to eat that’ every time I have to put something in my mouth.

– I had to carb count before and I was obsessive with it. I refused to eat over the 60g of carb I was allocated and I ended up in hospital a lot as a result

And this is what I was trying to explain to my endo. I can’t really cut out calories or eat less because I’m only eating to stop myself from going to hospital. If I try to ‘push through’ it, I end up sweating, shaking, get a headache, feel really sick, feel really dizzy, get stomach ache and get diarrhoea. Which I can’t cope with every day. His response to me saying this was ‘well what’s your blood sugar doing?’, which I said ‘it’s fine’ which made him just think I was over exaggerating and conclude that it’s a resilience thing. (actually, my blood sugar goes up when I feel like that and will keep going up to become hyper. Unless I eat and then it goes to normal)

But I know it’s not psychological (or at least not all of it). When I feel like ‘I need to eat’, I’m not actually hungry. But my body is telling me I’m hungry because I think it needs something and if I accidentally eat it, it goes away. Likewise if I take more hydrocortisone, or if I lie down, it sometimes goes away. It’s like something gets triggered hormone wise when I eat, and I feel better. Just the feeling doesn’t last long, it only stays an hour at most. Then the pangs come back. And it depends on other factors as to how much weight I lose- there are 2 weeks in the month I drop a lot in weight, the other 2 I gain or stay the same. Nothing changes diet wise, which is why I think there’s a bigger picture hormone wise going on.

I worked all this out a while ago, and I basically don’t eat meals anymore. This works a lot better and is how I’ve managed to lose weight. I only eat when I feel ill and I stop eating as soon as the feeling goes away. I’m still eating the same amount as before I reckon, but spread over the day rather than in 3 meals. And because I’m not ‘stressing’ my body out by making it ill by trying to stick to a diet which doesn’t work for me, it’s using energy better and means I actually can lose weight.

The advice I was given doesn’t work for me. But, I don’t think most patients are as disciplined as me, so he’s used to people making excuses. And to be fair, he hasn’t specifically given me that advice before and he’s my lead doctor. But because he’s my lead doctor, I felt disheartened that he wasn’t listening to me when I said ‘yes but that doesn’t work’. I weigh myself every day, I know what works and what doesn’t. Looking at his advice:

cut out calories. I did that and put on weight. Now I’m eating more calories, I’m losing weight.

don’t snack between meals. I just got rid of meals. And I snack all the time now.

eat less fat. Same as with the calories.

eat low GI foods. My body hates low GI. It has to work twice as hard to digest it, which increases the ‘I need to eat feeling’. Eating food that’s easier to digest means I need to eat less.

– Eat more vegetables. That’s pretty much all I eat anyway! I don’t eat grains or carbs

Don’t eat processed foods. Most of my food is made fresh from aforementioned vegetables

– have a drink instead. I know this anyway. It works for about 10 minutes. My body isn’t stupid and knows when I try to trick it!

I came away from that appointment pretty upset and angry that it just gives my GP more fuel to berate me with. Then I sat down and thought about it. I have been losing weight. That’s the important thing. It might not be in the way they’re telling me or as quickly as they’d like, but I have been losing weight. I wasn’t before when I followed their advice and I was in hospital a lot. Doctors don’t know everything. I’m losing weight and I’m not in hospital as much. My endo admits I’m a tricky, complex case, so why does he think I’d suddenly be straight forward when it comes to losing weight?

So no, I won’t be writing down everything I’m eating and I won’t be following his advice. I’m going to continue to eat when I need to and choosing foods that I think my body needs- I discovered there’s a word for this, it’s called intuitive eating. Somehow my body has kept me alive until now and I’m going to keep trusting it. And, in case I was in any doubt, I’ve lost another kilo since that appointment 10 days ago.

Next time I see him, I’ll say I did what he said and it didn’t work, and tell him what I’ve been doing instead. If doctors are expecting me to lie, then I may as well live up to their expectations! Except my lies are to prove that their advice doesn’t work in my case- I’ve been there and tried it, it didn’t work. If they listened to me in the first place, I perhaps wouldn’t need to resort to tactics to get the healthcare tailored to me that I need.

(I still love my endo. Unless we have a similar conversation next time!)

30 second tasks

My husband isn’t very good at cleaning or tidying (sorry dearest husband, but you’re really not!). He doesn’t seem to be able to see when something needs cleaning and also doesn’t do it ‘properly’. I used to do all the cleaning in our house, religiously every Thursday evening after work. So it was particularly difficult for both of us when me being sick meant I couldn’t do it anymore- he didn’t want to step up and do it and I didn’t want to become dependent on him for yet another thing.

Some of you might be reading and thinking ‘I’d love an excuse not to have to clean and get someone else to do it!’. And I think we all want that! But there’s a difference between *choosing* not to do something and being forced into not doing something. It makes your self esteem really bad. The other added bonus for me is that when I taper my steroids or get low cortisol, it makes me super obsessive about having things clean and tidy, and I end up trying to do really crazy things like sorting out the cupboard under the stairs when my husband is out, for example. Once I get an idea like that in my head, I have to do it. If I don’t, I feel rubbish, although if I do it, I feel rubbish. Either way, I usually end up having a big endocrine meltdown and both my mental and physical health suffers.

It’s a 2 pronged thing for my mental health: it’s not good having to rely on someone else to do it, particularly as I have high standards, and it also creates a lot of anxiety, which makes me even more obsessive. Not doing it stresses me out, both because the place is a mess, and from an obsessed about germs point of view. But doing it makes me physically ill, which then feeds into being more dependent on someone and feeling more obsessive than I did before. Being able to do tiny amounts helps with my physical health, because doing small tasks helps to keep my independence, even if it’s only slight, and doing light activity is good for my osteopenic bones and joints, and should hopefully slow down my body becoming even more useless (de conditioned) from inactivity.

One of the reasons I was able to stick it out teaching so long was because I got good at doing tasks in short bursts. I couldn’t concentrate an hour making a PowerPoint in one go, but I could alternate doing it with putting some things in the filing cabinet while sitting down (which I also couldn’t do in one go). That way I was doing a physical and a mental task to give me a ‘break’ from overdoing it. I put ‘systems’ in place to help eg work that needs marking in one box, work that’s ready to give back in another box. Simple, small changes which add up to a big difference.

I got my inspiration from a show called ‘the Unbreakable Kimmy Schmidt’. She made a comment at some point about only focusing on the next 10 seconds at a time, and then the next 10 seconds and then the next. If you think like that then you’d be surprised what you can do. So I applied it to my teaching and it worked. When I had a particularly big meltdown at home, probably after dismantling half our house into the living room Marie Kondo style and being too tired to put it all back, I decided I needed to rethink it all a bit. What systems like the ones I had in school would help at home? What things could I do in 30 second bursts?

Systems I use every day include:

– Marie kondo style drawers/wardrobe. Folding stuff her way makes it easier to see and easier to put away

– everything has a place in the fridge which makes finding food easier when I’m not feeling well

– I walk around the house with a small backpack to move stuff around. That way if I fall, I’ve got my hands free. And I leave the backpack hanging on the door in the room I’m in so I can put stuff in it periodically which need tidying, rather than waiting until it piles up

– I put cleaning wipes and/or microfibre cloths in most rooms. Most of my energy involved in cleaning is finding the stuff I need or putting it away. Making it accessible cuts that out

30 second jobs include:

– wiping the kitchen sides while I’m waiting for the kettle to boil

– dusting something as I walk past it to get/do something else

– cleaning a part of the bathroom each time I go to the toilet

– folding the washing in 30 second bursts sitting on the bed

Those are little things I can do. Don’t get me wrong, it’s still incredibly frustrating to have to limit myself to doing things in 30 seconds and there’s still a lot I can’t do eg anything that requires bending down, scrubbing, hoovering, filling the dishwasher, putting washing on… And I can’t do even 30 seconds on some days, but when I start to feel myself get anxious about it, I can remind myself that I can work on it during my next 30 second burst. It’s probably more of a token gesture to doing housework but it’s better than nothing- it makes me feel less of a burden, it helps my mental health, it helps my husband out a bit and it helps me slow down any deconditioning which might be happening in my body by doing small tasks.

Having to fight to stay alive when it feels like your doctors don’t care

TW: death, mental health

NB: regardless of the flaws in the system, individuals making mistakes, staff having a bad day, human error, someone reading my file for the first time… etc, this post is about how interactions with health care staff have made me *feel*. Staff might not be able to do anything about a broken system, but they can do something about how they make patients feel when using it.

It’s impossible to have a debilitating, chronic illness without thinking ‘what’s the point in this? Is it worth it?’ at some point. When something completely takes over your life and affects every second of every day, making normal things seem like Everest, you wouldn’t be human if you hadn’t wondered what it would be like if you just didn’t wake up one morning. I read on twitter recently (and I’m paraphrasing) that people assume the worst thing that could happen is death, but having a life limiting, life threatening, chronic illness every day where you’re essentially ‘dying’ every day, is possibly worse. That made sense to me. I’m not suicidal right now, but when it’s really hard, it feels like being in some kind of purgatory.

So imagine being in a passive suicidal state (where you don’t want to die, but it’s feeling like hard work to stay alive both physically and mentally so you want an ‘end’), and then you have to argue with a doctor or other healthcare professional about what you need to stay alive.

For context: I’m steroid dependent, because I have adrenal insufficiency, which means I need to take steroids at set times in the day to stay alive. I won’t be able to stop taking steroids ever and I’ll die pretty quickly if I don’t have access to them. This week, I’ve had to argue with my GP about getting the right amount of my steroids prescribed, and the hospital because they cancelled my appointment with my endo last minute because he went on holiday and won’t reschedule it for any earlier than November. These issues come up a lot, particularly with my GP.

With adrenal insufficiency, you’re recommended to have 6 months prescriptions of steroids to allow for stress dosing and any possible supply issues. My GP surgery doesn’t understand this and this week said I couldn’t have any more than 5 days worth because:

– they misunderstood the reason I’m taking them, thinking it was a different condition

– they didn’t understand how stress dosing means I don’t have a rigid dose every day/month. It varies some months

– I needed a medication review (but I did one 2 weeks ago)

– they couldn’t find notes from my consultant saying my dose. There’s a lot of letters on my file, but there are at least 2 which say my consultant is happy with my management of my illness and that I know what I’m doing

– they want me to see my consultant before authorising it. Except that’s a whole other problem…

– they said the pharmacy had done it wrong

– they couldn’t find/didn’t understand the guidance I’d provided them about my illness from NICE and 2 charities

– the computer said I couldn’t have it

All perfectly reasonable things to query, were this the only time I’d made this request.

As for the hospital, one lady I spoke to had the response of ‘I don’t know what to suggest really, you’ll just have to keep going to a&e if you get really bad’. So ‘try not to die before november’, basically.

That’s the abridged version because me moaning about everything that’s gone on this week isn’t the point of this post. Sure, 90% of the people we (my husband did most of it) interacted with were polite, barring one receptionist on a power trip. But that’s not always the case. And it still didn’t stop the feeling creeping in:

They don’t care if I die.

What happens if I just stop fighting to get my steroids? If I run out after the 5 days my GP gave me? If I didn’t call an ambulance and didn’t go to resus? What would happen? I’d die.

Would these people care? Probably not, because they probably wouldn’t get told about it. They’d maybe only notice that me or my husband had stopped ringing them to moan at them, and they suddenly had more time on their hands.

So why should I care if they seemingly don’t? All they do is roll their eyes when I’m having the same argument with them. Nothing changes. They blame each other, they blame me, no one wants to step up and take responsibility. My husband has to go through the hassle of trying to sort it because I’ve got so stressed out by it all and, ironically, I don’t have enough steroids to waste on stress dosing because they don’t want to give me any in the first place. Or he comes home to me crying about it, worried that it won’t get fixed and I’ll end up in adrenal crisis. So I feel bad and worry I’m a burden, which makes it worse. And then because I’ve wasted time and precious energy on this, I don’t have any to spend on quality time with my family or friends, which affects those relationships and limits my quality of life. Because it’s the exact same problem every time, your brain preempts it, so you’re gearing up for a battle before even picking up the phone. But it still happens, nothing changes.

This happens at least 3 times a month.

It feels like no one cares how this affects my mental health. So when I’m already in my purgatory because of having a chronic illness in the first place, having to fight to stay alive is a bit like the devil poking you with a pitch fork at the edge of a lava-filled volcano. Do I want to keep getting burned by his pitch fork, and maybe get out of it alive? Or do I just give in and jump into lava?

It’s exhausting. I know what I/my husband needs to do to ‘fix’ it. I know who to complain to, who to argue with. But is there a point to all of this? Is it worth it? What would happen if I stopped arguing?

Healthcare professionals, when you deal with patients with chronic illnesses, you’re only a tiny cog in a bigger machine. But, if one of the tiny cogs breaks or doesn’t do its job properly, the machine starts to break down, and it takes a hell of a lot of work to sort it all out and get it going again. Your role in it might seem small. You might not have any influence over how the entire system works. But the way you deal with patients matters, and I need people to see that.

The system won’t get fixed overnight, but here are some things HCPs/admin staff could do to help me:

– don’t make me feel like it’s my fault or that I’m an inconvenience

– apologise, even if it’s not your fault. Saying ‘I’m sorry this has happened to you’ means a lot

– try to come up with a solution. Don’t just tell me the system is broken and there’s nothing you can do about it. Because there has to be, particularly if death is an outcome

– follow through on any promises you make. Don’t make me ring and chase you

– don’t blame other members of staff. Particularly if it’s not their fault. And definitely don’t try to play me or my husband off against me, which has happened

– take some of the chasing over for me. I’m always the go between- why can’t my surgery ring the pharmacy? Liaise with the hospital?

– I can tell if you’re lying to cover something up. So please don’t.

I’m assuming people go into medicine because they care about other human beings. Care doesn’t just mean dealing with me as an illness, it means showing me you care about me as a person, that it is all worth it and there is a point to my life. Make me feel like you care about me so that at least that battle is easier.