Stress dosing for Christmas

The word stress has negative connotations with it but in adrenal insufficiency terms, it means anything which would be an added pressure to the body from what it normally deals with. And believe it or not, this includes happy or positive things too!

Cortisol production is one of those background processes that you take for granted if it works. Your adrenal glands produce cortisol on demand depending on what your body needs at the time, and they don’t just fire out extra for big things, like a car accident, they’re constantly monitoring what’s going on and making adjustments for smaller things too. If you think about cortisol production in relation to Christmas, here are some things where your body would naturally make more cortisol to compensate;

– getting annoyed with people who get in the way when you do the Christmas food shop

– losing their sellotape or scissors constantly when wrapping presents

– driving to see family or friends

– eating and drinking out of your routine and perhaps eating and drinking a bit too much

They don’t seem like big things, but they’re all seasonal activities needing more cortisol. Knowing I don’t make my own cortisol, I try to minimise the ‘stressors’ I can by either avoiding them completely or carefully planning. Which is fine when it’s a negative list, but for me it also includes positive things too. This is because the adrenal glands don’t know the difference between something that’s negative and needs extra cortisol and something positive which needs it- to them it’s just the same. Here are some positive Christmas things which will need extra cortisol:

– spending Christmas with 2 very excitable small children

– being excited about giving and receiving presents

staying up later than normal

– being extra sociable

I could live in a bubble and not get excited or do things and therefore my cortisol replacement could stay the same. But it’s not living and life isn’t predictable. So I’ve already decided that I’m going to stress dose over the Christmas period.

Normally, I’d feel bad about stress dosing for happy things. A lot of endos take the view that emotional stress doesn’t count and you shouldn’t stress dose unless someone has died and you’re in shock from grief. But what I’ve found is that emotional stressors have actually caused me bigger problems than illness related ones because they’re unpredictable and tricky to manage. As a patient though, it’s difficult to challenge the opinion of so many different experts and go against their advice.

So why am I doing it? I’m not just being stubborn or ignoring it, I’ve got my reasons!

– my endo trusts me and my judgement. This has given me the confidence to know what I need and do it. There isn’t a scientific way to check what my cortisol level is at any point, so it has to all be done based on my judgement

– I’ll be away from home so I don’t want to get caught out and end up in hospital

– I’m tapering from having had illness, so I won’t be doubling completely, more just increasing slightly

– I spend a lot of time living a compromised life, so a couple of days where I don’t feel like I’m completely dying (or at least am able to enjoy myself even if I still struggle) won’t do me any harm. It’s only a few days

– it’s always better to give yourself slightly more than too little. You don’t die immediately from too many steroids but you can easily from too few.

– there’s new research into this type of dosing appearing, but it’s new which means lots of endos haven’t heard of it or it’s up for discussion

– every single charity for adrenal insufficiency says increasing steroids around Christmas is a good idea. Particularly if you’re a child with AI who’s very excited about seeing Santa!

So there you have it. Stress dosing for adrenal insufficiency isn’t straight forward and includes positive ‘stressors’ as well as negative ones. I should probably write a disclaimer here which says I’m not an idiot and don’t just increase my steroids whenever I feel like it and am aware of the long term implications of too many steroids 😉 But for now, I’m looking forward to Christmas where I hopefully don’t struggle too much and enjoy being a little bit excited 😉

2019: Year in Review (sort of)

It’s the end of the year and the time when people start to think about new year’s resolutions and what they achieved in the last year. It’s a natural time of reflection, even if ‘new year, new me’ mantras aren’t your thing- you can’t help but think about it because there’s a sort of deadline. 

I’m not going to do that. I kind of already touched on this when I wrote about our 5th wedding anniversary. I *could* talk about the things I’ve achieved this year and say how amazing some of the things I’ve done have been. But I’m not going to, because I don’t want my life to read like a list of bullet points on a CV. 
To summarise my 5 year anniversary post, I find the pressure people put themselves under to have the Instagram perfect life worrying. And a bit sickening. Sure, you can look like you have an amazing marriage/life/family on social media, but is it really? And does it have to be perfect every second of every day? No. Because that’s not what life is about. It can’t be and shouldn’t be perfect every second of every day because nothing is perfect. And if it were, I’m pretty sure people would compare levels of perfection somehow too!
What I’ve discovered in the last 18 months or so is that life isn’t about the things you can list at the end of the year and say you’ve done or achieved. Don’t get me wrong, accomplishments are definitely important in life, but stick with me and I’ll try to explain what I mean! 
If you really put your mind to it and had unlimited access to money and were invincible, anyone could achieve anything. Climbing Mount Everest? You could do it. Become a CEO of a company? You could do that too. Give everything up and live in the jungle? You get the idea. A list of achievements isn’t really that big a deal if it’s just a ‘thing’ you’ve done.
Add in some restrictions or limitations, and that’s when it gets a bit more tricky. You couldn’t climb Mount Everest if you’re paralysed. You couldn’t become a CEO if you didn’t have the funds to invest. You couldn’t live in the jungle if you hadn’t learnt how to survive in the jungle, you’d get eaten on your first day. Suddenly these things become more of an achievement than just a ‘thing’. Why? Because it’s not just something to put on a list, it actually took effort to do those things. Or you had to adapt them to fit your circumstances. 
What makes it more than just a tick on the list? The feeling that comes with it. The sense of accomplishment, the rush of pride, the elation that something that seemed out of reach isn’t anymore. The ability to be able to share in your success with other people and celebrate it. In short, happiness. 
The first thing I’ve learnt is that while life might be made up of accomplishments, that’s not what makes us happy. It’s the feelings that you associate with those accomplishments. Unless you do something really noteworthy in life, like be the next Martin Luther King, realistically no one really cares about your checklist of achievements. They’re personal to you, and because they’re personal to you and how you feel about them, it should become less about the thing and more about the feeling associated with them.
I used to be all about accomplishments. Head of faculty before I’m 30, tick. Married before I’m 30, another big tick. Homeowner, charity volunteer, some cool holidays, tick, tick, tick. Was I happy doing those things? Yep definitely. Now I’m housebound a lot and really not very healthy. But am I any less happy now that I’m not on such a high achievement track? No, actually, I think I have more sense of accomplishment, pride and feeling of elation doing the simple things in life than I ever did the big things. 
I appreciate things more. I’m not just looking for the next big thing to challenge myself with. I enjoy what are really quite basic things. I don’t just look for the next thing on the horizon, I enjoy the meandering road to get there. I don’t consider the day to be wasted if I haven’t done something noteworthy by 3pm. If I had a nice day doing nothing but watching tv then that’s better than feeling anxious bit accomplished in having rushed around all day.
When I look back on my life, I’m positive I’ll look at the stuff I achieved but overall I’ll want to know that I was happy with *all* of my life. Not fragments of it. Because without invincibility, unlimited money and determination, most people won’t achieve everything they want to in life, but they can achieve an overall feeling of having had a good life. The big stuff counts, for sure, but it’s the seemingly mundane stuff in between that makes up the most of your life. 
I get a lot of joy from crocheting. I like watching how colours coordinate, I love being able to create things from a ball of yarn and it challenges me a bit every day. Does that seem like a big achievement to anyone else by itself? No. But do I enjoy doing it and does it make me happy? Yes. And it’s about all I can manage every day. I also like watching masterchef Australia most nights with my husband. We like talking about what’s going on and then he makes me laugh when he’s cooking and he’s quoting George and Gary talking about preparing a 3 hat dish (‘Taste, taste, taste’) while he’s making me something basic nachos. It’s not instagram worthy by any stretch of the imagination, but it’s those memories I think about when I’m feeling a bit low over the amazing CV worthy stuff. 
I think I have had some noteworthy achievements in 2019. But they’re things I’m proud of because I *feel* proud of them. And it’s the feeling I remember more than the achievement. They probably don’t mean much to someone who’s climbed Everest, but they matter to me, I celebrated them with people who care about me, and that’s all that’s important. Because life is made up of feelings and emotional responses to things more than the actual things itself. By all means, shout about your achievements of 2019 and be proud of them on social media. But remember the feeling that came with them more than caring about trying to make it look like a huge achievement for other people’s benefit. 

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 I cost the NHS a lot of money (despite being a good patient)

I’m under no illusion as to how much my ‘free’ healthcare costs in the real world. And I’m not even talking about actual treatment, I also mean all the hidden costs to the NHS people are unaware of. I’ve lived in France and experienced how insurance based healthcare works (to an extent) and had the unpleasant feeling of not knowing if my insurance covered an ambulance call out off the top of my head, and could I afford to pay for it out of pocket if it didn’t.

I’m a model patient. I take all my meds, I turn up to all my appointments, do all my physio… if anyone knows how to save the NHS money and use it properly it’s me. But it’s chronically underfunded and isn’t actually equipped to deal with long term chronically sick people because the money it’s given is mostly used to put out metaphoric fires rather than long term provision. Here’s how I ended up costing the NHS a lot of money a couple of weeks ago, despite everyone’s best efforts.

I had a run in with a post office employee, and the counter is based in my pharmacy. I needed an ambulance so I dialled 999 and got put on hold because the ambulance service was extremely busy. One of the questions is about immediate threat to life, so I said I wasn’t immediately dying and not to use the red flag which I have against my name- it gives me a fast call out because of my medical condition. In the meantime, the pharmacist was the only medical person onsite so he had to stop what he was doing to look after me. Which is fine, but obviously him not doing his actual job has a knock on effect and this post is all about how tiny ripples end up costing the NHS.

The ambulance took a long time because it was so busy, so after 40 minutes and because I was getting worse, I rang 999 again and asked them to activate my red flag so I could get an ambulance there on blue lights. But the ambulance they were already sending was the nearest one, so they just upgraded the call from amber to red. In doing so, it set off the blue lights while stuck in road works traffic, which freaked out a driver who ended up having a car accident by driving into a skip lorry. So the ambulance had to stop and make sure everyone was ok before carrying onto me. It was only a couple of minutes but because that happened, they didn’t get to me in the allocated time for a blue light call out so would have had to pay a fine. Big cost number 1.

We got to hospital and a&e was also backed up. There’s nearly always people in the corridors waiting but it was particularly bad today. I got given more treatment by a consultant and then she said I could go to MDU/GPAU to be seen by the medical doctors there. This is a day ward where GPs can refer patients who need hospital treatment and/or a decision about whether or not they need to be fully admitted. This made sense because I didn’t need emergency intervention anymore, but I did need hospital intervention and possible admission.

However, they were also really busy. One of the problems with this ward is there is usually only one senior doctor on and lots of junior doctors. Who normally don’t have a clue what to do with me, and in any case, they’re not actually allowed to make decisions about complex patients like me. The staff on this day weren’t good at working as part of a team, there were a lot of temporary staff or staff who’d clearly been drafted in last minute to cover the hecticness so nothing was happening very quickly. It’s hard to be efficient when you don’t know who anyone is or where things are kept.

But the nature of my condition means I have to have certain meds at certain times, and because I was in hospital, I needed a doctor to decide whether I needed to be on IV or oral doses and write this up. Which meant a lot of arguing with the nurses to get the senior doctor down to decide so that we could get the drugs written up. In making him come and see me, this obviously upset the already fragile ecosystem of the junior doctors which wasn’t working anyway and had a knock on effect.

Senior doctor decided I needed a chest x ray. But by now, it was classed as out of hours, so sending me for a chest x ray from this ward would cost more than if I’d had it in normal hours. Which would have been fine, except for the fact it took 4 hours longer than everyone thought it would. Had I been sent for the x ray from a&e it would have worked out cheaper. In a lot of cases, they would normally discharge someone and tell them to come back the following day for their x ray if that was the only bit of the puzzle we needed. But that’s not possible with cases like mine, which meant I needed admitting until the chest x ray was done.

But there weren’t any beds anywhere in the hospital. Because it’s a medical decisions unit, the ward closed at 2am, meaning that there weren’t any staff allocated to it beyond that time. However, there were 3 of us needing beds and at 2am, the ward would ‘breach’. This basically means go over the target time and everyone gets fined. Plus there’d need to be staff to look after us so either the hospital pays them overtime or they stay on beyond the end of their shift and don’t get paid.

In my case, because I came from a&e, I would I also cause a breach at 12 hours. Which was about 2.30 am. I could hear the ward manager getting more stressed about it as she tried to find me a bed. Here’s what she tried to do:

– no beds on assessment wards so she tried other random wards

– no beds on those so they had to open another ward

– they’d already converted some wards elsewhere in the hospital and they were full so they had to convert a day ward into a night ward

– but day wards have stretchers not beds, so she had to wait for people to physically bring her beds

– then she had to get the senior doctor to sign off on staffing. But he was the medic on call so was elsewhere

– nursing staff had to be found to staff the ward. They took time to arrive

She didn’t manage to get through all that before I breached and they would have got fined. But by now they’d already got fined so she carried on sorting it.

In the end, I ended up on a ward from 3am-7am by myself, with my own nursing/healthcare staff. I’m not even joking. There was me on a ward full of empty beds and 2 nurses and a healthcare. All because I needed an x ray and they didn’t want to pay for out of hours service.

At 7am, 2 other patients joined me from a&e. But, remember this ward is a GP admissions day ward, so they had to convert it back for 8am. So they had to put us in isolation rooms so we had somewhere to be while waiting for ward round. Not a big deal but that’s still cleaning, porter and extra nursing staff that have to do their jobs for this to happen.

Then we obviously needed feeding. I’d told people about my medical diet but the kitchen needs orders in for ward meals the day before and I hadn’t been admitted then. Which means the ward has to ‘buy’ my meal from the canteen, which is another expense, not to mention the member of clinical staff they sent to go get it.

I got my chest x ray, the consultant reviewed me and I was discharged. Had they done the x ray the night before, it would have worked out cheaper. Instead my overnight stay would have cost thousands. The consultant was livid.

The sad thing is, it was a pretty stressful admission for me too, so it’s not like I received amazing care and the staff bore the brunt of it in the background. All of us had a terrible night. The system is broken if staff can’t do right by their patients and if patients are receiving suboptimal care. Yeah, I was kept alive but I didn’t have a place to sleep until 3am, I had to argue for my basic meds, I was herded around like cattle, I didn’t get given a meal from 15.00 one day til 8am the next. Add in an orange jumpsuit and I may as well have been in some kind of prison.

Why’s it like this? Because people are putting out fires rather than thinking about what happens further down the line. The fines they’d have had to have paid on me in that 24 hours would have been thousands. And they were just trying to stop one fine after another. What else can you do? The problem is bigger than the individual hospital. Staff can only do what they can with what’s in front of them at the time.

Add all the fines/costs to the treatment I did actually have and it works out very expensive:

– ambulance

– a&e assessment and intervention – IV HC and fluids, pain relief, blood tests, consultant

– MDU assessment and consultant, medications

– chest X-ray

But I recognise that there are things I can do to help:

– I had my own meds with me so they didn’t have to get pharmacy to prescribe them/buy them in

– I had some of my own food with me so I could have an evening meal

– I have a ready packed hospital bag so I didn’t need to be given pyjamas and personal hygiene items

But I shouldn’t have to do that. Staff shouldn’t be working past the end of their shift because there’s no one to look after patients otherwise. There are so many things which shouldn’t happen but do.

You can say proudly that we have one of the best healthcare systems in the world, the staff are amazing, it’s free for all… but it won’t be free and it won’t be one of the best if things keep going the way they’ve been going. You might also be privileged enough to be able to say that you don’t need to use the NHS regularly and it’s always wonderful when you do. The system works for emergency care or for things which are curable eg an infection needing antibiotics. It doesn’t work for long term use. It’s a victim of its success- people are surviving when they would have died in the past and there isn’t provision in place for this.

With this in mind, remember, the only thing guaranteed in life is that our health will fail and we will all die. Anyone can become ill or disabled, it’s just a matter of when. Please remember this when voting in this week’s general election!!

Seeing a rheumatologist

A couple of weeks ago, I went to see a consultant rheumatologist. It’s been about 15 months of various people saying ‘I don’t know what to do, I’ll refer you to…’ about the fact that I keep getting stress fractures but finally I was vaguely in the right place. I’m still not 100% sure what they do, but the gist is rheumatologists deal with bones, connective tissues, muscles etc. It’s less about the actual physical bones, like you’d see an orthopaedic doctor for, more to do with the way the whole skeletal/muscular system holding us together works.

I went to the appointment knowing that:

– I keep getting stress fractures which are slow to heal because my bone density is not very good

– the majority of my bones are classed as osteopenia and a few of them are osteoporosis. Osteopenia is like pre osteoporosis.

– having this diagnosis isn’t a great one at my age

– steroids make your bones weaker

– you can’t replenish bone density much beyond the age of 30 (in general, for everyone), you can only really maintain what you’ve got. So diet and supplements only do so much

– it’s unusual for a person my age to have the bone density scan results I have

– there are bone treatments available but no one is very keen on putting me on any.

The main reason for seeing this consultant was because while I’ve only stress fractured my hands and feet so far *touch wood*, I’ve done it by doing really simple things like standing up. So if I can stress fracture my foot that easily, who’s to say I won’t stress fracture my spine or hip by getting out of bed? Which would be very bad. And as part of the slow healing process, I have to take extra steroids, which will weaken my bones further. So the idea was, see how we can keep the bone density I’ve currently got and look at more specialised bone treatments.

But, like with everything, it’s not that simple. I’d already worked out from my reading that the reason why everyone was very reluctant to prescribe some pretty aggressive treatments is because they’re largely untested in people my age. Most of them are only given to elderly people who die anyway before the long term implications on things like heart and liver function and fertility can be seen. And, even if they do live long enough, old people get those problems anyway. So how do you tell if it’s from the bone treatment or just because everything else is failing? Everyone has to die of something. In other words, aggressive bone treatments only have to work for those taking them for a short period of time, in the majority of cases. The other option is things like joint replacements, but routine surgery for me is still risky so we have to try to avoid it.

The consultant confirmed this but he also added something I hadn’t come across in my research. I fit the criteria for the treatment but I’m high risk because of my age. The after affects of the treatment last for 7 years after you stop taking it. So whatever we decided would impact on my life for at least the next 7 years. Imagine having to think about what you want to do for the next 7 years. What if it makes my organs fail? What if I’m allergic to it and end up with constant near anaphylaxis for 7 years? He actually laughed and rubbed his face and said he doesn’t know what to do, that I’m rare for even the people he sees and he’s going to have to refer me to a ‘super rheumatologist’ in the region and maybe a national osteoporosis clinic. Because if we got it wrong ‘we’d all be in a lot of trouble’ (were his exact words).

Soooo, not only do I already have various uncommon illnesses, but the treatment for those which keeps me alive is giving me rare complications that no one really knows what to do with. Fun times!

He said he’d order some bloods to cover all bases, to make sure there aren’t any other reasons behind my low bone density. This is where it got interesting. I looked at the ones he’d ordered, and they were mostly endocrine work ups, which I assumed the various endos I’ve had would have checked out before. Wrong. Because I’d had a bit of a roundabout way of getting diagnosed, a lot of the diagnosis was based on assumption of what came before and trying to save the NHS money by not ordering complex tests, ironically costing it more in the long run. It’s only been recently where I’ve insisted they actually do the tests to confirm these diagnoses properly because I’ve wanted to be informed about my treatment and life options that we’ve started getting a bigger picture. And, to be blunt, because I know how it works a lot better than most of my doctors.

One of the tests the rheumatologist ordered was parathyroid hormone, which came back as ‘slightly elevated’. I didn’t think much of it because it doesn’t necessarily mean an awful lot if it’s technically still in range, but it’s not very often that I actually get test results coming back abnormal so I did some googling. Parathyroid hormone controls how much calcium is kept in your bones and how much is transferred into your blood. It forms part of a feedback loop with calcium and phosphate (among other things). Too little calcium in your bones makes your bones weak. A couple of months ago, I was in a&e in Cumbria and asked them to do an endocrine work up (for ‘completion’, as doctors say to me) and the doctor there said my phosphate was undetectable. I didn’t really think much of that either, except for increasing phosphate in my diet, until I read about the interplay with parathyroid function. A bit more time on google says that low phosphate and high parathyroid hormone can be a sign of Hyperparathyroidism, which, if you look at the symptoms, I have a lot of. The symptoms are a bit vague though, and nearly all of them can be attributed to another one of my many illnesses. However, the one thing that has been stumping my doctors regarding bone density is that the scan I had when I first started steroids 5 years ago and the one I had last year are virtually identical. Which means that unless taking steroids depleted my bone density in the first six months and there’s been no decline since, it’s possible that I already had osteoporosis and osteopenia bones before.

Of course, it could be one big coincidence and I don’t have a parathyroid hormone problem. But there are still a lot of coincidences for me to not get it looked into. And, in a very backwards way, it would almost be better for me to have a PTH problem which is treatable, as opposed to my bone problems being down to my steroids, which I have no choice about and would therefore just get progressively worse.

Unfortunately, I’m currently joining the dots between random doctors in 3 different counties having mentioned to me in passing that the separate components of this feedback loop are a bit skewed. Good job I was paying attention! They don’t know what tests each other has done and they can’t see the results of any tests which have been done. So we need a full set of results in one place to be able to see if it is just a coincidence or if there’s something in it. I’ve written to the people involved, now just waiting for the painfully slow admin to be done!