I canโ€™t catch a break

Actually, I can, since all I seem to be doing is breaking things right now! My friend said this as a joke when I was telling her about my latest stress fracture and I found it funny so I stole it ๐Ÿ˜‰

I fractured my foot a couple of months ago by getting off the sofa. Then I slipped and fell in the shower and thought I’d got away without fracturing anything. Except at the weekend, I went to put down a coffee mug while sitting on the sofa and there was an almighty crack, crunch and a lot of pain in my ribs. I get rib pain all the time anyway, but this stopped me breathing for 10 seconds and I couldn’t move for a little while. So I thought ‘you can’t seriously have fractured your ribs just by sitting on the sofa, can you?’ and took some pain killers.

A few days and some tramadol and Cocodamol later, my chiropractor tested my ribs and said he thought I’d broken one. I’d since decided I wasn’t in ‘enough pain’ for me to have fractured a rib (fractured ribs really hurt, right?), but he said that I was making the same face as when I’d broken my foot and he’d tested it, and my version of what’s ‘bad enough pain’ is probably a bit skewed. True. It’s not the worst pain I’ve ever had, but it is pretty bad. I think I probably weakened it when I fell, and twisting to put the mug down probably just finished it off.

Currently I’ve got a broken foot and broken rib. And I’m awake at 4am because I’ve now done something to my neck because of trying to sleep in a funny position for my broken foot and broken rib. Basically I can’t turn my head without getting pains in my neck, back, shoulders and arms and it’s spasm-ing even if I don’t move. Come on, body, give me a break!

I’ve got weakened bones because of having to take steroids (cortisol replacement)- some of my bones have osteoporosis and others have osteopenia (pre osteoporosis). But in order to heal bones, your body uses up more cortisol, which is why I take steroids, so I have to increase my dose. Which makes me more likely to get fractures, apparently just from sitting on my sofa.

I saw my GP this week and she’s *finally* referring me to a rheumatologist to see what they can do about my bones. I’ve been asking her for a year what I should be doing and she’s been reluctant because treatments for bones are usually only given to old people and there aren’t any studies as to the long term health implications bone treatments have on people. Mostly because old people are so close to dying (to be blunt) when they get put on them anyway, you can’t tell if they got heart failure because they’re old or because of the bone treatment. I can see her point, and I don’t want to end up with heart/kidney/liver failure by accident- broken bones won’t kill me whereas liver failure would. But referring me to a rheumatologist at least gives me some options to think through. I think me turning up with a foot cast and saying ‘yeah I think I broke my rib too’ probably helped.

Unfortunately, you can’t put your ribs in a cast. And they’re slow to heal because every time I breathe, it’s the equivalent of me walking on a broken foot without a cast on. It’s never immobilised, so it aggravates the break. And I can’t stop breathing… so lots of pain killers and some comedy moments when I get stuck are in my future. I’ll leave you with one from today when I got out of my Uber:

The foot cast is longer than my actual foot and you obviously can’t bend it at the ankle. The easiest way to get into a car is broken foot first, but I didn’t have this option with my Uber so I had to go broken foot last, and the angle for getting out of the back of the car like that is a *nightmare*. So I got in just about ok, but then when I got out, I couldn’t get the angle right. So I had to basically stand up, kneel on the back seat with my good leg, pivot around and ‘reverse’ bum first out of the car, all while this (very nice) Uber driver was trying to offer to help me. It’s a good job I can laugh at myself because it was pretty embarrassing! And I’m pretty clumsy, so naturally I dropped my backpack in the middle of the road. Natural instinct was to run away, but that’s tricky with a broken foot, so I kind of hobbled away as quickly as I could, my cast making a thunk pirate-like noise on the ground as I went. ๐Ÿ˜‚

โ€˜You must be really fed up of your broken foot by nowโ€™

I’m finding this phrase amusing at the moment. Lots of people seem to be saying it to me because it’s been more than 6 weeks since I’ve broken my foot, but because steroids make my bones brittle, I’ve got another 3 weeks of having to wear the cast. To them, it’s been a really long time, they have a visual clue every time they see me that ‘it’s not fixed yet’, and they assume it must be getting on my nerves. I’m getting a lot of empathy (sympathy?) for it.

Which is kind, but I find it amusing. In the big scheme of things, my broken foot isn’t a big deal. It won’t kill me, it isn’t the most painful thing I deal with on a daily basis and it doesn’t really stop me from doing any more or less than before I broke it. Here’s why people think it’s annoying:

– the boot thing is hot

– it’s heavy so it hurts my back and knee

– it makes it awkward to walk

– the broken foot itself hurts

– it stops me from doing ordinary things

– it’s an eyesore

Whereas the reality is:

– I can take it off if I get too hot. But I can’t regulate my body temperature anyway, so having hot flushes and dripping with sweat isn’t unusual for me. So adding an extra layer temporarily isn’t that big a deal

– my back and knee hurt anyway. Now there’s just an actual reason why they hurt. I can kind of preempt that type of pain and do something about it, which is easier to deal with than random pains

– I couldn’t walk far anyway. Except you can’t see how close to passing out I feel every time I walk around on a normal day, but you *can* see the fact that it’s awkward to walk with a cast. In fact, I actually find it a bit easier to walk around with it on than I did before I broke it, because my right foot is supported and doesn’t hurt as much in general, which it always did before.

– yeah my foot hurts. But if I don’t stand on it, it’s just an in the background pain. The daily pain in my ribs, stomach, head and back are gritting your teeth, making you want to black out type of pain. Broken foot is nothing in comparison

– it hasn’t stopped me doing any of the things I used to be able to do, because I was already really limited in what I could do. I’ve had to adapt certain things eg I go upstairs on all fours, but I couldn’t bend down, stand on tip toes, get up and down off the floor etc before. It’s no different now, just at least I can’t break my foot now because it’s in a cast. I can still break the other one though…

– it’s an eyesore. It is. I’m going to a wedding tomorrow and I’ll have a cast in wedding photos. End of the world? Not really. Because if we think about how I’d like to look on a daily basis- I’d like to be my size 8 self from before illness, I’d want to have clean hair (I can’t shower and do stuff in the same day), I’d want clothes that fit me rather than ones for comfort/which don’t show me sweating/which my body doesn’t react to, I’ll probably sweat a lot which makes wearing make up tricky, I have to carry a bag the size Mary Poppins has to fit all my necessary medical crap and I can’t wear heels because I couldn’t wear heels anyway because of aforementioned random foot problems. Wearing the cast at least gives me an ‘excuse’ for all of those things which I can say in a simple ‘I broke my foot’ sentence and people will leave me alone. Whereas sweating profusely with no visual prompt as to why usually gets me looks of disgust.

However, my broken foot has made my life more complicated because it impacts on my adrenal insufficiency. But I tend to think of that as it just being another thing I have to factor in in the ever changing thing that AI is:

– I’m guessing my steroids. Broken bones need extra steroids but no one knows how much so I have to guess. I do this a lot though so it’s not new

– I have to sleep slightly differently which means having to sleep slightly sitting up (asthma), with a pillow between my legs (back issues), with my foot elevated (broken foot) and on my side if I can (rib pain). Sleeping is just a bit more complicated, but it was already complicated anyway.

– I have to take more pain killers. Which just means I’ll have to taper off them again. But I did it before so I can do it again.

There’s possibly more, but you get the gist. While it’s kind people are empathising and acknowledging the challenges/discomfort I have because my broken foot is taking time to heal, it’s not the worst thing I deal with. And there’s a time limit on it- it will take X amount of time to heal. Whereas my other illnesses, aches and pains are for life, they impact hugely on me and they can kill me. Maybe it’s the visual reminder, like I’ve said, or maybe it’s because people find the idea of something being for life difficult to deal with, but I’ve got way more sympathy in the last few weeks for my broken foot than I have for my life threatening encounters! ๐Ÿ˜‰

(Not a ‘give me more sympathy post’, more an observation ๐Ÿ™‚ )

Gastro Issues: Can You Help?

Please share to see if someone else can relate/help me out ๐Ÿ™‚ Warning… I’m writing this post to see if the powers of social media/blogging can help me get to the bottom of some of my stomach/gut issues. So I’ll be talking about bowels and bowel movements! Maybe don’t read if you’re squeamish or eating ๐Ÿ˜‰

For people new to my blog, I’m a female in my 30s who can’t work (since 2015) because of my illnesses. My ‘main’ illness is adrenal insufficiency, which means my adrenal glands don’t produce the stress hormone cortisol, which is a hormone necessary for life and I’m on daily cortisol/steroid replacement therapy. Because it’s uncommon, I’ve had to do a lot of reading around it and other things I’ve been diagnosed with, making me an ‘expert patient’. But I’ve also been told by my doctors that I seem to be a pretty complex/unusual case of an already uncommon illness (more on that later). One of the big things I’m having issues with at the moment is abdominal pain and chronic diarrhoea, and I’m not really getting very far diagnostically/treatment wise/symptoms management wise. Diarrhoea is particularly tricky with adrenal insufficiency because it puts me constantly on the brink of adrenal crisis, which is a life threatening state. I have regular hospital/a&e admissions to try to avoid adrenal crisis.

What I need help with:

Working out what causes the problem and how I can control my diarrhoea, nausea and abdominal pain because I feel like I’m permanently firefighting to stay out of hospital and I have a poor quality of life.

I’ll give a bit more medical info later for any medics reading who want to know, but here’s my daily (gastro related, I have many others) symptoms:

– stomach cramps

– bloating

– diarrhoea (Bristol scale type 7). No blood, sometimes mucus. Sometimes green, mostly yellow/brown

– constipation

– sweating

– wave like/contraction like pains

– tachycardia, highest has been 180bpm. I also get funny heart rhythms

– feeling sick all the time

– feeling dehydrated

– feeling hungry all the time. I don’t think I am actually hungry, I think my body tells me I’m hungry because it’s lacking something. I feel better if I’m eating small amounts little and often

If I’m going to get stomach ache or diarrhoea, it’ll usually happen between 1pm and 4pm or later in the evening. But it happens other times right before I get admitted to hospital.

Things which I know make it worse:

– eating certain foods. I eat low carb, gluten free, no chicken, no pork because I noticed those make it worse.

– having a high heart rate. After eating some foods or eating too big a meal, I’d get tachycardia even if I wasn’t moving.

– if my temperature rapidly changes. If my body’s struggling or I go from cold to hot or hot to cold

– over exerting myself. Showering, walking too far and climbing stairs usually sets it off.

– alcohol. I don’t drink any now

– stress

– not eating. If I don’t eat, I still get diarrhoea, but it’s usually a million times worse and ends up with me in hospital straight away.

Things which improve it:

– drinking Coke Zero. I don’t know why. I’ve tried more healthy options like peppermint tea, ginger based things, green teas, but they don’t work.

– ready salted crisps. Again, I don’t know why. But when I’m trying to avoid a hospital trip, coke and crisps stop it or at least slow it down. I thought it might have been the salt in the crisps, but I’ve tried other salty foods instead and it doesn’t work.

– taking more hydrocortisone. Whenever I try to taper my steroids to my baseline, it gets worse, even if just 2.5mg. If I increase them back again, it goes away.

– lying down. If I lie down when my Apple Watch tells me I’m tachycardia then I’m less likely to have stomach issues.

– eating carbs in general helps. But it’s a short term fix and it definitely doesn’t help my endocrine problems.

– Cocodamol

– eating only a few mouthfuls at a time rather than meals.

I call an ambulance or go to hospital when:

– I nearly black out on the toilet

– if I’m dripping with sweat or shaking uncontrollably

– when I can’t put up with any more pain. When it’s really bad I get a ball-shaped pain on either side at the front below my ribs, so I’m assuming it’s 2 organs/muscles of something that I have parallel on my body.

– if I’ve had more than 5 movements in 24 hours and it’s not easing (trigger for sick day rules)

– if I get my ‘this is going to end badly’ feeling

– if I’m sick or more feeling sick than normal for me

– if I can’t eat anymore. Usually I can eat and drink normally even with stomach pain/issues

After lots of emergency admissions last year because of diarrhoea and the risk of adrenal crisis, I was referred to a gastroenterologist and had the following tests:

– sigmoidoscopy

– colonoscopy with biopsies

– endoscopy with biopsies

– SeHCAT scan

– faecal calprotectin was positive once but negative all other times

– faecal elastase normal

– stool cultures all normal

– MRI small bowel

which rules out:

– c. diff

– infection

– microscopic colitis

– ulcerative colitis

– pancreatic insufficiency

– carcinoid syndrome/neuroendocrine tumours

– bile acid malabsorption

– Coeliacs Disease, although not eating gluten has helped a little

The gastro doc said I have IBS but wanted me to follow up with a hepatologist because my ALTs were high and an ultrasound showed Non Alcoholic Fatty Liver Disease. The liver doctor said she wouldn’t rule out Crohn’s disease completely because I’m on daily steroids which might mask it and sent me for a fibroscan which showed no scarring. Waiting for follow up.

I’ve also been to see a cardiologist because of my tachycardia and had a 72 hour holter test and ECG. He ruled out Inappropriate Sinus Tachycardia and SVT because he thinks I’m tachy in ‘an appropriate response’ to something else going on (but he didn’t know what), so he doesn’t want to start me on meds to reduce my HR because my heart is compensating for something else. I seem to have POTS-like symptoms in that my heart rate goes up more than 30bpm from lying to standing and it goes up more the longer I stand up. In reading some of the lifestyle advice for POTS and making changes, I’ve managed to improve my average heart rate but still have periods where I’m tachy quite a lot. I’ve had a read about autonomic system problems, because I know they can contribute to gastro issues, but my GP isn’t keen on looking into it.

My daily diet is pretty much the same every day (although not everything in one day):

– yoghurt and grain free, low carb granola

– cheese

– coffee

– sugar free squash

– tuna salad

– egg muffins/omelette

– homemade vegetable soup

– carrot and cucumber sticks

– vegetables

– dinners like meat and veg, chilli, curries, stews (without rice/pasta)

– olives/Mediterranean diet things

– coke and crisps

Other things which might be worth knowing:

– I had a cortisol day curve test on what my baseline of hc should be and it said that my cortisol levels were sufficient- upper normal at my dosing times. It feels like my body isn’t getting to use the cortisol that’s in my blood though, because my blood work says it should be fine, but I still have lots of low cortisol symptoms.

– my body works backwards, which is the bit confusing my docs. But I have data and I run ‘experiments’ on myself to make sure I’m right before I talk to doctors. So if I eat, my blood sugar goes down, and it goes up by itself if I don’t eat. My blood pressure goes up instead of down in adrenal crisis. I lose weight when I take more steroids and gain it when I’m on my baseline. Caffeine brings my heart rate down, as does IV steroids. Those are a few examples.

– I can usually tell as I’m eating something if it’s going to give me stomach ache. I get a ‘ feeling’ and it’s usually right. Likewise I can make my blood sugar drop from 7 to 4 in the space of 5 minutes by eating the wrong thing. It’s like my body responds super fast to food.

– I used to have really high cholesterol but eating low carb high fat seems to have rectified that.

– I drink a lot and feel thirsty all the time. ? Diabetes insipidus. I don’t have diabetes mellitus.

– my thyroid is checked regularly and is on the lower end of normal

– despite having diarrhoea for the best part of 18 months, I’m still overweight. But then I’m backwards- I lose weight when I don’t have diahorrea and stay the same or gain weight when I do.

– other medical conditions I have: asthma, reactive hypoglycaemia, hyperlipidaemia, hypertension, osteopenia, depression, NAFLD.

– medications: hydrocortisone, asthma inhalers, montelukast, amitriptylline, Cocodamol, antihistamines, citalopram, vit d, calcium, ramipril, omeprazole, loestrin.

It could be down to IBS like the gastro doc says, because the symptoms fit, but I’ve done a lot of food diaries and experiments and think I’ve narrowed down food or eating habit related triggers. Plus it’s a bit odd that it usually happens at the same times every day, improves with steroids and happens after I do specific activities. I’ve looked into the FODMAP diet and will try it once testing has stopped if I have to, but I’m not sure it’ll help from a blood sugar management point of view.

The thing I struggle with the most is I permanently feel like I’m on the edge of adrenal crisis, which puts a huge strain on my body. Aside from that, having daily diarrhoea and pain is really annoying and hard to manage with everything else, and my quality of life is very poor- I’m housebound most of the time. I’m not due to see my endo for a while and I’m being bounced between specialists from various departments who all seem to be scratching their heads a bit.

If you come across this blog, please share and see if any of it rings any bells with you or sounds familiar! A lot of my diagnoses were found by accident or despite other indicators being ‘fine’, so I wouldn’t consider anything too random or unusual at this point!

Thanks for reading ๐Ÿ™‚

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.

To My Liver Nurse

To My Liver Nurse,

After such a positive appointment with my liver doctor last month, I wasn’t actually worried about coming to this appointment with you for a scan of my liver. Normally I get anxious about meeting new healthcare people for the first time, worrying they’re going to make snap judgements about me, blame me for bringing on my health problems myself, tell me I’m being dramatic or that it’s ‘all in my head’, lecture me about the side effects of steroids, roll their eyes and tell me that I’m not trying hard enough. Because that’s how most healthcare people made me feel for a long time before I was diagnosed with adrenal insufficiency, and even in a lot of appointments afterwards, because of their ignorance. Normally, I mentally prepare myself for a fight and rehearse my explanations in my head to any potential comments that might come up. And I spend a lot of time practising CBT and trying not to catastrophicize all of the things that have happened in medical appointments in the past. I’ve been working on this with my counsellor a lot. Because between medics trying to kill me fairly regularly either by withholding meds or by giving me lethal doses of drugs where I’ve literally had to fight them off, or them making me feel like I’m making a big deal out of nothing when actually I’ve been close to death, unsurprisingly, I don’t really trust medics.

I’ve been working really hard on trying to show myself that positive interactions with healthcare people *do* exist and therefore the week of anxiety I have before an appointment is unnecessary. And the appointment with my liver doctor helped me see that because she really got me. She was supportive, she said what needed saying but in a way which benefited me, not her, and she paid attention to what I was saying and didn’t belittle me or treat me like an idiot. From the word go, I knew I was in safe hands.

You were the exact opposite and I hated our time together. You had the potential to undo about a year of work I’d done surrounding what probably is some kind of medical PTSD. But you caught me on a good mental health day, fortunately, and I was able to rationalise it. You still caused harm though.

First of all, you were running half an hour late, which isn’t the end of the world, except for the fact I’d had to fast for this test. 4 hours might not seem that big a deal to you but it’s a huge problem for me. And regardless of whether or not you think it’s a big deal or not, keep that opinion to yourself. I happened to ask a healthcare how long it would be at the same time you came to call my name and could instantly see from your body language that you weren’t impressed. How *dare* I be commenting on your lateness?! I explained about my blood sugar starting to go a bit weird, which is why I was asking and you immediately said ‘don’t blame me, blame doctor what’s her face for turfing me extra patients’. Excuse me? Doctor what’s her face? Turfing? Defensive statements like ‘don’t blame me…’? We got off to a great start right there. Already I could feel my anxiety about the appointment being a horrible one reappearing. Except because of my adrenal problem, it’s not just a weight of anxiety in my stomach, it floods my system and makes me feel sick, dizzy, sweaty and shaky in the space of a nanosecond. Something which I’d been so far avoiding despite needing to fast.

Before you get defensive again and say ‘well I’d had a busy day/I’m overworked/she was asking me to do extra stuff…’ I don’t care, to be blunt. You are supposed to be a professional, act like one. Don’t blame your colleagues, you suck it up, smile politely at your patient and do your job. Bitch about it later to your colleagues if you must, but misdirecting your anger at your patients is not appropriate. You don’t seem to have considered my feelings about this appointment at all, so I’m definitely not going to be sympathetic to someone who gets paid to be there, no matter how crappy they think their job is.

As we were going into the room, you asked me if I was diabetic and I said no, but I have reactive hypoglycaemia so have blood sugar problems. You kind of stopped listening then, and interrupted me. Was it because you didn’t care or because you were running late? Either way, you were pretty abrupt.

You were pretty clear about what to expect from the test, which I appreciated. But then you said that you needed to switch probes because you couldn’t get the result properly. I was a tad worried at this point because the last time this had happened on the ultrasound of my liver, it had been because it was in a lot worse state than everyone had told me it was going to be. You said it wasn’t to do with that, more to do with, and I quote ‘how do I put this delicately, in people who are overweight’. I know I’m overweight, this isn’t a surprise to me, but I felt the anxiety in my stomach grow a bit more. Usually when people are ‘trying to be delicate’ about things like weight, it’s because they actually want to highlight the point more. They’ve made a judgement about you and they want to make sure that you know they’ve made that judgement, under the guise of trying to spare your feelings.

Great. You’re one of *those* nurses. And sure enough, I wasn’t disappointed. ‘Your liver’s pretty good really. Lose half a stone and your fatty liver will go. All you have to do is eat less and move more’.

You carried on talking for a bit (lecturing me is a more appropriate word), saying how in my case it was all to do with being overweight and how I ‘just’ needed to lose weight. Factually, that’s only partially true. Some of it is because I’m overweight. But there’s a whole host of other things that is giving me fatty liver and I can’t actually exercise more or eat differently. You didn’t ask me about my diet, my eating habits, my medications, my treatment plan, my other conditions or my lifestyle. You just made an assumption that I’m fat so I ‘just need to lose some weight’. Ie it’s *my* fault I’ve got NAFLD.

At this point I remember thinking to myself ‘you can let this go two ways: you can get upset about it and blame yourself or you can just ignore this stupid witch because she clearly knows nothing about you’. I decided to ignore you. I think I might have rolled my eyes at this point or made a comment about how I’ve got a lot going on. So you conceded slightly and said ‘well obviously it’s not easy to exercise with a broken foot’. I laughed. Exercising with a broken foot wouldn’t kill me. Exercising on a normal day would. My foot is the least of my problems, in fact, it’s more an annoyance than everything else I deal with on a daily basis. I told you out loud that that was the least of my problems.

I don’t really remember how the goodbyes went, I think you told me that the results would go back to my consultant and I hastily left. I just wanted to get out of there. The whole interaction maybe lasted 5 minutes at the most, but it’s been going round in my head for the last 5 days, along with my rationalisations about it. But those rationalisations go quiet sometimes, when I’m really tired, and instead I just get your voice shaming me about my health on repeat.

To you, I was 5 minutes of your day. To me, appointments and medics run my life. They *are* my life. You might think you’ve seen it all before and you might have seen millions of patients who haven’t really tried to lose weight or who maybe are contributing to their health problems. But here’s the thing: we’re all individuals. We shouldn’t be treated the same, otherwise why not put everyone with a fatty liver all in the same room and give us the same lecture you gave me. Hey, it’s efficient, it saves money and time and it means you don’t have to talk to any individual patients in a caring way, which you clearly lacked.

Patients with complex chronic illnesses are a whole different thing entirely. Do you think you’re the first person to lecture me about my weight? No. So even if you didn’t know my case specifically, you should at least have used your professional skills to determine what would actually be useful for me to hear. All your lecturing did was make me stop listening to you about *everything* you said afterwards, not just the lecture. Even if you had said something useful, I wouldn’t have heard it because I was desperately trying to drown out the negative voices in my head that had started up. It wasn’t even a choice, I couldn’t listen properly if I tried. You made me feel like it was all my fault, even if you don’t think what you said was ‘that bad’ or you remember it differently. But I’ve heard it before, over and over from various healthcare people, and whatever you said or didn’t say, this is how you made me feel. Except unlike when you think you’ve heard it before, I actually have. Because the fat shaming lecture is usually the same.

You don’t know me, and as a patient, it isn’t down to me to give you an excuse or a reason as to why your interaction with me wasn’t appropriate. At one point, I would have blamed myself. Not now, I’ve done too much work to be ruined by one ignorant nurse. So here’s the bottom line: your care wasn’t personalised and it should have been. Your attitude was poor from the start and it shouldn’t have been. I come with a complex series of emotions and prior experiences which might not have anything to do with you, but at no point did you bother to ask me anything which might have helped inform your lecture and you should have. You’re paid to do a job and I think you failed in doing it during our appointment.

What would have helped me? By all means, point out I’m overweight if it needs saying. Don’t be ‘cute’ with it though. Ask me questions- ‘are you able to lose weight?’ is pretty good because it gives me the chance to say what exactly is hard about losing weight. And then if I need something to kick my arse in gear, then you can launch into your lecture then. Give me the benefit of the doubt before casting your judgements.

Something which bothered me a lot was the fact that I’ve actually lost a stone in weight. But you didn’t ask me that so I couldn’t tell you. I’ve worked really hard at having a liver friendly diet. I’m a model patient. But you didn’t ask me you just assumed. I needed you to acknowledge I’d made some progress. Because I have, and when your life revolves around healthcare appointments, you really need people to recognise the work you’ve put in, the determination it’s taken and give you some encouragement to keep getting out of bed every morning.

I was 5 minutes in your day. But your shaming has filled up my last 5 days. It’s a long way til my next appointment where someone might acknowledge my resilience. Instead of being able to use your comments as a means of positive encouragement to keep going when things are hard, I’ve now got the guilt and shame that you inflicted on me to try to drown out instead, on top of everything else.

You can’t change the facts of my complex, stupid illnesses but you can change the way you make me feel about them. And you made me feel like I was a failure from our brief interaction.

Liver Update: non-alcoholic fatty liver disease & fibroscan

Just after Christmas, I had an ultrasound of my liver after some high Liver Function Tests (LFTs) which showed I had ‘moderate-severe non alcoholic fatty liver disease’ (NAFD). This then meant I got referred to a liver doctor. The referral was months away (June) so I did some research to learn as much as I could about it to see if I could do anything to help. You can get a fatty liver for many reasons; genetics, being overweight, medications like steroids or statins, diet, lack of exercise… In a lot of people, you don’t really notice it, don’t have any symptoms and it’s just ‘one of those things’, you just want to stop it progressing. And the good thing about livers is that they’re pretty clever and can repair themselves.

NAFLD is pretty common in patients with adrenal insufficiency because you can get it from taking steroids. People who take steroids also tend to be overweight (side effect of steroids), which is another contributing factor. However, anyone would be alarmed from hearing the word ‘severe’ and I definitely didn’t want to have another bit of my body break if I didn’t have to. So I did some research to see what I could do about it and discovered that my diet was already pretty good for livers but that I could add in extra foods which I called ‘liver friendly’ ones eg more healthy fats like avocado, oily fish, coffee, nut milks and sunflower/pumpkin seeds. I also pretty much eliminated processed foods from my diet since the liver finds it hard to process those. I couldn’t really do anything about my steroids or exercise but liver friendly foods was better than nothing.

I started to think differently about how my body works- until now everyone doctor-wise had been focusing on their individual bits and not me as a person. In thinking about how my entire system functions, I realised that lots of little things might be contributing to my angry liver- I had chronic diahrrea, my heart rate was high a lot, my blood sugars all over the place… I made a lot of small changes which I hoped would help overall. For example, my HR is a lot better when I lie down, so I laid down more during the day, which in turn made my diahrrea better. I stopped eating gluten because my body has to work harder to process it. I’ve got really strict with the way I eat in that I only eat very small amounts of food in one go, like a couple of mouthfuls. This makes me feel less nauseous which means my body isn’t working as hard.

I’m not going to lie, it’s been a lot of work and it’s probably a good job that I’m so bloody stubborn and stick at things. The problem with lots of little things is that it’s hard to see how they’re overall impacting on the bigger picture and you don’t ever get a break from being on the ball. It’s mentally exhausting and requires a phenomenal amount of willpower and resilience. But the work seems to be paying off since I had a fibroscan on Monday and was told that my NAFLD is in the early stages and I don’t have any scarring, which means I’ve either stopped the progression of NAFLD since Christmas or I’ve even managed to reverse it a bit. Hooray!

A fibroscan is a type of ultrasound which measures the rigidity of your liver. It was pretty quick and only took a couple of minutes, but you have to fast for 4 hours before so that your liver isn’t trying to digest food at the same time as they’re trying to scan it (you can drink water and have pills though). The probe is placed by your ribs and it sends a couple of pulses onto your liver to see how rigid it is, which then tells the person scanning it whether or not you’ve got any scarring or not.

I did not get on with the nurse doing it, she was pretty rude and I’ll write another blog post about that experience later this week. Because of her manner, I’m still a bit cautious about what she said liver wise. Clearly my blood results have improved and the lack of scarring is good. But I’m also aware that she basically looked at my liver as ‘just a liver’ and that in comparison to the very poorly livers she sees every day, it’s pretty good. However it still might not be good when you think about it in relation to factors to do with me eg my age, my already good diet, my overall medical history and health, my lifestyle, which she didn’t take into account. So I’ll wait until my awesome liver doctor sees me again before I get too enthusiastic about it. I’ve had that before.

Whatever I’ve been doing seems to have had a positive impact overall, so I’m going to keep doing it for now. The thing I think people forget about health is that it’s not always something you can fix by taking some pills or by doing a diet or exercise plan for a set amount of time. You don’t ‘achieve’ good health and then have it forever. It takes work and requires more effort the older we get and things start breaking down. Just in my case, I’m having to do a lot more work earlier on than the average since my body seems to be in its 60s in terms of health years rather than in its 30s like it should be.