‘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.

‘People should view mental health the way they view physical health…’

‘… if you had a broken leg, you’d take medication, so taking medication for a mental health problem should be the same.’


‘Telling someone to snap out of depression is like telling someone with asthma that there’s plenty of air so they should be able to breathe’

I can’t tell you how much this phrase (or similar ones) irritates me. People should absolutely not view mental health in the same way as they view physical health, because a) they’re completely different, just like no two physical illnesses are the same but b) more importantly, people don’t view physical health in a good light in the first place!!

I have both physical and mental illness(es). I’ll sum up my thoughts at the end, but to start, here are some phrases that are regularly said to me about my physical illness, which people assume are just said about mental ones:

‘You don’t really need those tablets/inhalers. Your body would be much better without them’

Despite me saying ‘I will die within 48 hours’, I’m still regularly told to ‘just stop taking steroids’, I still hear this at least once a week. By both medically and non-medically trained people. I won’t feel very well if I don’t take my antidepressants, but I won’t die just because I haven’t taken them. But I will if I don’t take my steroids.

‘If you ate more healthily and exercised more you wouldn’t have X’

Why is it always kale? Why can’t the magic diet for curing illness involve a big dominos pizza and a McDonald’s milkshake? Again, I hear this at least once a week in relation to my physical illness, just like people who have depression are told they’ll feel better on a green/clean diet. Besides, no one is touching my diet unless it’s my endo or a dietician.

‘You shouldn’t feel ashamed to talk about it’

People don’t like talking about things that make them feel uncomfortable, and any illness which is long term or chronic, whether physical or mental, makes people feel uncomfortable. It’s the notion that they can’t immediately ‘fix you’ there and then with their advice about diet and lifestyle or by buying you kale for dinner which is the actual problem, not whether it’s a physical or mental problem.

‘If you looked after yourself better/hadn’t done X/lost some weight/had a more healthy routine etc then you’d be better’

Ie you’re not helping yourself. Usually said after you’ve flatly turned down their 95th offering of kale/advice. Aside from a few cases, it’s hardly ever the person who’s sick’s fault that they’ve got any type of illness. Full stop.

‘You’re not trying hard enough/snap out of it’

Normally said when your illness gets in the way of something they want to do. You feel like you should be apologising to other people all the time as it is, for being an ‘inconvenience’. Do people really think if it was a case of ‘just snapping out of something’ we’d not have done that by now? Is will power going to make my adrenal glands start working again? Nope. But a person telling me I’m useless will definitely make things worse.

‘Do you really need X’ or ‘do you really need to do that?’

There are many things people with chronic illnesses do to make their life easier/to manage their illnesses. And most of them aren’t obvious to other people. The advantage of mental illness, is that a lot of the coping strategies are as invisible as the condition is, so you actually get bothered less by other people about things that you’re doing to cope. With a mobility aid, it’s a visible reminder, and every person and their dog seems to feel the need to comment on it. ‘What have you been getting up to?’, ‘do you really need a wheelchair?’, ‘it’s not that far, why can’t you walk?’

‘you can’t be that ill if you did X yesterday’

Chronic illnesses are like paint colour charts. They have different shades. Some days they’re beige and and in the background, other times they’re hot pink and glaring you in the face. Just because something was possible one day doesn’t mean it is the next and just because I couldn’t do something one day doesn’t mean I won’t ever be able to. That applies for any chronic illness.

The stigma around mental health illnesses has a lot less to do with the fact that it’s a mental illness and more to do with the fact that people are talking more openly about having a chronic illness. It’s that it’s chronic and might not ever go away that’s the issue. People struggle to accept that something can’t be cured, that medicine isn’t some kind of witchcraft and that you could potentially be chronically ill forever. And, because mental health illnesses are actually pretty common in an age where we’re constantly putting ourselves under stress and trying to keep up with appearances of our ‘perfect lives’ on social media, there’s a stigma around saying you feel depressed or anxious because others view it as a sign of weakness.

Side note: remember, being depressed and anxious temporarily are human emotions which you’re supposed to have. It’s if they’re chronic that’s the problem.

So my first point is, whether it’s mental or physical isn’t the problem. It’s the fact that it’s long term and makes people feel uncomfortable that is. My second point is, it’s to do with what people can understand or empathise with.

Everyone knows that a broken bone or cancer or pneumonia are ‘bad illnesses’. Pain, cancer treatment and not being able to breathe are obviously big problems. And, in a lot of cases, they’re curable. People like curable things.

It doesn’t seem to make any difference if there’s a visible prompt, like a plaster cast or hair falling out, or not. Although it can help some people to empathise. I say this because I get more empathy from people when I talk about my tendency for stress fractures, my asthma or my anxiety than I do when I talk about my adrenal insufficiency. Asthma, broken bones or anxiety are all well known illnesses, adrenal insufficiency isn’t. It’s hard to empathise with something you don’t understand, but my adrenal insufficiency is about a million times worse symptom wise, can kill me super quickly, and controls my life. Asthma, fractures and anxiety are just annoyances in comparison. But other people understand them better which means I get fewer of the comments I mentioned above in relation to those than I do about my AI. If the vast population ‘only’ (I mean that as in you have one illness rather than 10, not that it’s inferior) has depression OR anxiety and they hear those comments, of course they’re going to think the stigma is just around mental illness, because they don’t have any experience to compare it with.

The good thing about people going around saying ‘it’s ok not to be ok’ (which also drives me mad) is that it’s at least opening the dialogue about how our health isn’t just a ‘you’re either cured or sick’ notion anymore. It’s a sliding scale and changes all the time. Because mental illnesses are now really common, they’re being talked about more which means that we’ll hopefully see a change in the stigma around long term illness in general. Because it’s definitely not the distinction between mental and physical illness that’s society’s problem here, it’s how people view any illness and their health in general.

Here’s hoping that people’s attitudes overall to chronic illness and disability changes, so everyone can feel like they can ask for help or talk about their health without feeling like they’re going to judge. In the meantime, don’t offer me kale 😉

(Ps I actually like kale!)

To my liver doctor

To my liver doctor,

I really, really hate seeing a new consultant. I’ve had some bad experiences in the past where I’ve been belittled and blamed and made out to be making up my problems, exaggerating my symptoms or been told I ‘clearly have something wrong mentally’. Where people have refused to treat me and have literally slammed the door in my face. So I was really anxious about seeing you for all of those reasons, but also because you’re a new speciality to me and I don’t really know what livers do.

My GP referred me to you because an ultrasound told me that I had a moderate-severe case of non-alcoholic fatty liver disease, but that’s all I knew. I’d done a bit of research about it and added some liver friendly foods into my diet in case they could help reverse some of it. I’m well aware that having something like a fatty liver at my age, when I don’t drink alcohol and I have a balanced diet is *not a good thing*. So all round, I was pretty wound up about what you might say. And I was really, really worried you were going to lecture me like others had in the past, telling me I’d brought my problems on myself by being overweight and taking steroids.

I needn’t have worried. For a start, you were really friendly, despite it being what us teachers would call ‘the graveyard shift’ on a Friday afternoon. You introduced yourself (rare) and asked me to introduce my husband. I usually do introduce him to doctors, but it’s rare anyone actually asks first. I also really liked that you called yourself a ‘liver doctor’ rather than a hepatologist. Already I could tell that you wanted me to understand our consultation and you actually cared about me as a person, and not just as a walking bunch of blood results and an ultrasound scan. I got the impression you wanted to know about all of me, and not just my liver.

You asked me to clarify my diagnoses and medications lists. Not just because you needed them for accurate note keeping, but you said ‘so I can compare them with the ones I’ve got here’. You’d read my file. This hardly ever happens, but you knew about me having been to various consultants and having had emergency admissions. You noticed that I’d written my hydrocortisone dose as a different one from your record and asked about it and you didn’t give me the deer in headlights look when I talked about baselines and stress dosing for my adrenal insufficiency. You even knew what the correct baseline is for my weight.

At this point, I felt the tightly wound spring that was coiled up in my insides release. I was amazed, like cartoon mouth drop to the floor amazed. I wasn’t going to have to spend 5 minutes explaining what adrenal insufficiency is, what the treatment is and how steroids are for life and that I can’t ‘just stop taking them’. I wasn’t going to have to go over some pretty traumatic hospital admissions for the ninety-fifth time. You’d read my file. You know about my illness. In short, I knew you had this covered. I didn’t feel like I had to ‘test’ your endocrine knowledge like I usually do, trying to suss out if you do actually know or you’re just pretending you know. I was so reassured, I felt calmer, I didn’t feel like I needed to be ‘switched on’ the whole time. I could actually be like any other patient at an appointment- listen and ask questions.

You had a sense of humour. I confessed while you were examining me that I didn’t really know where my liver was until recently and how I’d done some reading about it but was still pretty clueless. You made a joke about it and then asked if I had any symptoms. I was a bit hesitant to bring up my ‘quirks’ in relation to my reading, but you gave me the confidence to tell you all of my backwards stuff and let you decide what might or might not be relevant. And then you didn’t once patronise me and tell me I was wrong or that I’d misunderstood- you recognised that I’m an expert patient and I can identify trends in my health. You took what I was saying as it was meant to be; a patient reporting what she’d noticed, even if it’s not what textbook normally happens. You looked at the graphs on my phone of data that either I’d inputted or my Apple Watch had collected. You really got my steroids. You understood what I was saying about how I get bad gastric symptoms when I taper and suggested that maybe we needed to put Inflammatory Bowel Disease back in the mix, since my steroids might mask the inflammation. You made it clear that you knew that I don’t have a choice about taking steroids and didn’t make me feel bad about being on them, which was so helpful. Usually I just get told by non-endos that the steroids are the problem and unless I stop taking them things won’t get better, with a pregnant pause while they wait to see if I respond with ‘oh well I’ll just stop taking them then’ (which will never happen). You didn’t do that.

I was also immensely grateful that you said I have a fatty liver because I’m overweight and on steroids but that none of that was my fault. It was what I was worried about and what I was expecting you to say, but you didn’t remotely imply that I’d brought it in myself. In fact, I was happy that you praised me for having managed to lose a bit of weight! You communicated to me that you knew I was trying my best and that the problems giving me fatty liver were a consequence of having adrenal insufficiency, not because of anything that I could control. You said the hard stuff that needed saying- I’m young but overweight and have various complex illnesses and that combination isn’t good. That fatty liver is usually a sign of other bits struggling. But I also felt more calm about the fact that it’s pretty depressing having a disease that most people only get when their body is on its last legs in old age. There was something about you that said ‘it’s a bit crap, but I’ve got it. I’ll worry about your liver, you worry about the other stuff’.

I actually left the appointment with no progress made. You said I needed a more detailed scan to see the extent of the damage to my liver and if it had scarred or not. My LFTs in my blood work had improved, and you congratulated me on that. But you said we needed to try to work out what’s going on and said I maybe needed retesting for IBD. You had it covered.

Normally, I leave consultant appointments needing to cheer myself up. Usually my husband and I end up in the Macdonald’s on the way home from the hospital. I didn’t feel the need to bribe myself to get through the evening with treats, I wasn’t anxious, pissed off or crying, like I usually am after appointments. Don’t get me wrong, other doctors might be good in their fields and order tests (perhaps with a bit of arguing), but I don’t usually feel cared for or like I’m moving forward. I usually feel like a lot was riding on the appointment and feel deflated that nothing had changed except the promise of more tests. That I’d just go back to my life of waiting around for the next appointment trying not to die in between, feeling terrible and having to pick my mood off the floor. Basically drag myself through the next few days after the appointment because I felt so demoralised and that things look bleak.

That’s how seeing consultants usually makes me feel. Except with my endo and now with you. We made zero progress in that consultation medically. Nothing changed and I didn’t know anything more than when I walked in. But everything changed mentally for me. You’ve got me and my liver covered and I know that, even if it is bad news. Someone else besides my endo ‘gets’ me and wants the best for me. Someone else acknowledges that I work bloody hard to be a good patient and that I’m not to blame.

So thank you for increasing my medical cheer leading squad by another member. There aren’t very many in the team, but some of the negative voices are slowly starting to be drowned out by the cheering ones.

Image: shutterstock

‘Don’t you miss cake?’

This weekend, I went to two fundraiser coffee/cake events, one hosted by a church group I go to, the other by a friend at her house. But I don’t eat cake! Or rather, I can’t eat cake because:

– it’s not low carb and I have to watch my blood sugar

– a lot have gluten in, which I’m intolerant to (although the church morning did have amazing gluten free options!)

– a lot of the other ingredients often found in cakes, even if they are gluten free, aren’t very liver friendly foods

So I don’t really eat cake anymore. *Very* occasionally I’ll have a tiny amount of something my husband is eating, or I had birthday cheesecake and a friend bought me some mini cupcakes this year for my birthday. But on the whole, I don’t eat cake anymore. My blood sugar was too high for me to remotely even consider gluten free cake at the church event and my friend very kindly catered for me with a low carb alternative, so I didn’t feel like I was missing out. And I still had a lovely time at both gatherings! But not eating cake at a cake event is a bit obvious, so I got asked ‘do you miss eating cake?’ a fair bit.

Short answer, yes. Of course I miss cake! I used to love sweet things. Who wouldn’t love to indulge in something they really like?!

Long answer, not as much as you might think. Maybe it’s just me, but there’s a difference between following a diet like weight watchers where the goal is to lose weight but ultimately nothing really changes if you don’t lose weight, and following a medical diet like mine which helps to keep you alive. I tend to split it into 2 parts in my head. I follow my diet because:

1. Stakes are high. I’m not going to drop dead within a minute of me having eaten something I shouldn’t, but cumulatively, if I don’t follow my diet, it will make me seriously ill and shorten my life. My pancreas is already broken and does the opposite it’s supposed to, I’ve got moderate/severe non alcoholic fatty liver disease, my cholesterol is high, my adrenal system doesn’t work so my blood sugar suffers as a consequence, I’ve got intolerances, certain foods make my heart rate dangerously fast… and that’s when I follow my diet! Can you imagine the fallout if I ate what I wanted? Now, if that wasn’t a good enough incentive, there’s always the fact of…

2. There are few pros to eating cake. I would maybe enjoy it for the first few minutes after eating it. But then I’d start a rollercoaster of low to high blood sugar, I’d feel sick, I’d have stomach ache, I wouldn’t sleep later, my skin would itch and ‘shrink’, I’d probably get a migraine, my heart rate would increase so I’d probably get diahrrea as well… there’s a long list. So is it worth 2-3 days of nastiness for the sake of 5 minutes of cake? Nope.

But I *am* human and it can be hardwork being tempted by things like that. Because who wants others to view them as potentially ‘awkward’? And really, it would be great to join in with everyone else doing something normal for a change and not having to worry about it.

It’s a bigger picture thing. For me, if the ultimate choice is ‘if you don’t eat cake now, you might live for a month longer overall’, it’s a no brainer really. Yeah, it can be frustrating. But frustration is better than premature death! 😉

(Although if you do see me eating cake and point this out to me, you will probably be quickly shot down- if I’ve chosen to eat cake and I’m clearly aware of consequences, I don’t need the Pudding Police telling me what to eat!!)

Here are some photos of the amazing cakes people made. I enjoyed looking at them all and inhaling all the sugar 😉