August and Junior Doctors

August is when all the new junior doctors start in hospitals. I do actually like talking to junior doctors because they tend to be very enthusiastic, they ask lots of questions, and they actually talk to me like a human. They haven’t yet been conditioned to do everything as quickly as possible yet and they’re still finding their way meaning they still take pride in their bedside manner and are trying to impress their supervisors.

However. Having been a teacher, I get that they have to learn somewhere but I’ve had a few amusing encounters on this hospital admission so far. I’ve seen a lot of junior doctors because the consultants keep bringing them to show me to them because of my adrenal insufficiency but also because my presentation of AI is also unusual. Here’s some of what’s happened this week (so far):

– one doctor spent a lot of time bragging about a trick she’d learnt as to how to get a cannula in easily. Then couldn’t. She should have maybe saved the bragging until after.

– I had to teach two of them how to turn call buzzers off. One nearly pulled the crash alarm instead.

– another told me that she wasn’t farting when her shoe squeaked. Then said ‘am I allowed to say farting or do you think it’s a rude word?’ and had a bit of a panic

– it took one doctor an hour to try to get a cannula in, bearing in mind I needed my IV HC pretty sharpish and being poked with a needle for an hour definitely didn’t help. I told her to try a smaller needle (after half an hour and she looked like she was going to cry) and pointed to a vein which usually works, which it did but then she got so excited she’d got it in that it fell out again. Later on she asked me if I thought it had tissued, not as in ‘can you feel it going up your arm’ but like ‘can you check my cannula work for me’. It had tissued, even I could see that!

– one lady’s ponytail wasn’t tight enough so kept falling on me when she was trying to get blood. Then she got it tangled up in her stethoscope and my IV line.

– more than one has counted themselves in for sticking needles in me. I don’t think it’s for my benefit since it’s always done quite quietly.

– two have said ‘hello my name is ‘ and then said my name rather than their name. At least they’ve made the effort to learn my name!

– one doctor talked to my veins for a while and then said ‘pleeeeassssse go in this time’ before stabbing me. I wasn’t overly reassured by this!

– a cannula tissued quite spectacularly and made my hand and arm swell up like aunt Marge from Harry Potter. I pushed my buzzer and the doc came in and said ‘oh my god that’s so bad I’ve never seen that before’. Neither had I so I was a bit like ‘what, an I going to continue swelling like aunt Marge from Harry Potter?!’

But, like I said, enthusiastic and friendly. So I can put up with a few eccentricities while they learn 😉

My week with the NHS: 20th August

Monday

I had a GP appointment to tell her about my heart rate and things I’d worked out in the last couple of weeks. I was pretty sure her response was going to be ‘when are you next seeing your endo, ask him’ but also knew that if I didn’t go to her first then my endo would say ‘go to your GP’. So my husband and I went. The gist of it is, I have a high heart rate which gets a lot faster very quickly when I stand up or bend forward. If I’m actually walking, it tends to be lower and then shoots up when I stand still. If I sit or lie down, it goes back to ‘normal’. By fast, I’m meaning I got to 190bpm when I stopped walking the other day and 160bpm because I bent down to pick up my shoes. I also get a funny heart rhythm which if I hold my breath it goes back to normal. Or if I eat salt or take extra hydrocortisone I don’t tend to get it.

I relayed all this to my GP and she made some kind of remark about why did I have to be so complicated in a despairing voice. Which kind of irritated me a bit because I would also rather not be complicated. It would be nice to go to my GP and for her to go ‘I know how to treat this’ rather than me explaining stuff to her.

I already had a holter test done earlier this year, where they measure your heart for 24 hours and it said that I have some funny heart rhythms and tachycardia (fast heart rate). But not anything that would make anyone worry. Having said that, I’ve had lots of medication changes since then. And just because it didn’t show anything on the test, doesn’t mean there isn’t a problem, it just means it could be the standard ‘I’m not going to do it because I know I’m being watched’ from my heart that day.

Anyway, my GP said what I thought she’d say and wants me to take the test results and my readings to my endo. To be fair to her, she said she didn’t want to add any new medications in without my endo approval, which is a valid point. My blood pressure was pretty high, it has been for the last few weeks so I’ve also got to do a blood pressure diary twice a day for a week. Not a big deal, I’ll just add it in to my morning and night routine.

My statins seem to have vanished from my last prescription order so I asked her to reissue it. She blamed the pharmacy, the pharmacy blame her. This happens a lot. I tend to just nod politely because I don’t actually know where the problem is, but it’s annoying.

Tuesday

Now that I’ve got 2 sets of results from my GP, I decided I should probably try ringing my endo’s secretary to see if he wants them in advance. The switch board kept ringing out and then disconnecting so after trying randomly all morning I gave up and decided to leave it until tomorrow.

Wednesday

Finally got through to the switchboard, the woman literally said 3 words to me in the interaction- the hospital name. I asked for the secretary and department and she didn’t even say anything in reply. ‘Ok’ would have been better than nothing. It might not sound like a big deal, but I really hate using the phone, she just gave ‘piss off’ vibes down the line and because it’s so abrupt I haven’t had time to process that I’ve finished speaking to one person (which I’d prepared for in my head) and am thrown into speaking to the next person way quicker than I can keep up.

My endo’s secretary is nice but also very blunt. I’ve spoken to her before. She has a habit of cutting you off before you finish a sentence which makes it feel a bit like whiplash sometimes. However, I got my question answered, I just bring my test results to my appointment.

Thursday

I went to the pharmacy to get my statins prescription. They had a new assistant there which meant I actually had to say my name and ask for it! Usually I know everyone there. I don’t pay for my prescriptions because I’m exempt due to my condition- there are a few conditions like this, like diabetes and hypothyroidism. You’re issued with an exemption card which gives you 5 years of free prescriptions before you have to renew it. The conditions tend to be ones where if you don’t have access to your medication, you wouldn’t survive. It’s a bit of a contentious subject, so I’ll write another blog post about that another time 🙂

My view on sitting exams as a student with additional needs

Lots of people got exam results in the last couple of weeks for either GCSE or A level. And lots of parents posted in some of the endocrine groups I follow about how proud they were about their kids having achieved good results despite having adrenal insufficiency and the additional challenges they faced because of it. Fair enough, they should be proud. The thing which bothered me was the amount of people who posted comments like ‘without additional help or support because they wanted to sit their exams like the rest of their friends’.

But they’re not like the rest of their friends. They have a life threatening illness which massively impacts on their daily living, and comes out with a vengeance when it’s hot outside and a stressful exam period. When you fill in job applications, there isn’t a box which says ‘these are my results but I did it all without additional help despite my chronic illness’. You don’t get any extra credit for it, except maybe self satisfaction. And no one would care if you spoke to someone, they’d just think you were making excuses if you tried to explain you’d had a bad day and that’s why your result was lower.

Adaptations or support don’t give disabled students an advantage over other pupils, it levels the playing field and makes them have the same chance of success in their exams as non-disabled students. Extra time doesn’t mean they just get longer, it means an acknowledgement of the fact it takes them longer to do it in the first place because of slow processing or needing extra breaks. Just like dyslexic students might get extra time or a reader.

So ‘taking the exams just like their friends’ is a false statement- they might sit in the same room with their friends with the same invigilator but the consequences later on or beyond are greater. Because they made themselves sit in the same room with no extra time might mean they don’t achieve as fully in the next exam because their brain is still fried from the first. They might not get the relaxation time they desperately need between exams at home because they have to immediately go to bed. And once you start the exam, is anyone actually paying attention to who’s in the room? Not really. People have special arrangements for a whole range of learning needs or conditions, so it’s not really that unusual to be put in a different room for exams.

Don’t get me wrong, I was a stubborn student who didn’t want to be treated differently. When I did my GCSEs, A levels and university exams, I had 25% extra time, rest breaks if I needed them and the option of doing the exam in a different room. Sometimes I used the breaks and extra time, sometimes I didn’t, depending on how I felt on the day. But I had the option in every exam if I needed it. With hindsight, I probably had undiagnosed adrenal insufficiency back then too, but I got mitigating circumstances because I would quite happily sleep for 20 hours out of 24 and felt sick and dizzy (unknown cause, it got put down to stress). And it got a lot worse when I got stressed about exams. My teachers suggested these things and I accepted them because I wanted to do well in my exams and I knew if I wanted to ‘be like the rest of my friends’ I only had one chance to do it. Unless I wanted to be held back a year and resit but then I would feel even more different than if I’d just accepted the adaptations in the first place. Aside from that, there’s no way my mum would have let me take my exams without the support anyway. She’d have made me take it even if I didn’t want it because that’s what was best for me.

So I know what it’s like to want to be like everyone else and I feel proud I did my exams despite feeling ill and inspite of having the adaptations. I kind of feel cross at those parents who said they were proud of their kids for ‘sitting their exams like everyone else’ because I know that had someone said that to me at the time, I’d have felt like a fraud, like I was cheating and that I didn’t deserve the grade I got because I had the ‘help’. While it might not be detrimental to their own children if they had a positive experience sitting their exams without support measures, it definitely would have been detrimental to students like me who reluctantly took the measures, hearing comments like that. Or to other students who struggled through their exams and kind of wish they’d felt it was acceptable to put support in place. I’m not denying that those parents probably think they’re being supportive by saying how proud they are in that context, but it’s another, more subtle, example of how disability and illness is often viewed as a weakness in this country the fact they need to mention it at all.

My week with the NHS: 13th August

This week I was having a week where I was fed up of doing patient admin. I also had a pretty rough start to the week so was trying to avoid making myself feel more poorly.

Monday

My husband went to get my hydrocortisone prescription again, bearing in mind we’re well into the second week of trying to sort this out. Today it was the right brand, but not enough of it- they’d only prescribed one box. However, I was so fed up of the backwards and forwards (as was my husband) that I decided this was a battle that could be had another time. I have enough to do what I need to do with it, if I end up needing more, I’ll probably be admitted to hospital anyway and they’ll give me some there TTO (To Take Out).

Somehow, either the doctors or the pharmacy didn’t prescribe or dispense my statins. So I’ll have to ask for that to be reissued. Again, another battle for another day.

Tuesday

I wasn’t planning on doing anything health related today but I ended up sorting out things for my PIP (disabled benefits) claim with the DWP when they called. Don’t get me wrong, it was a positive phonecall, but even when I try to pace myself out dealing with health stuff, not everything can happen according to my plans- people have to do their jobs. It’s just tricky when you don’t know you’re going to have to deal with stuff because it has a knock on affect.

Wednesday

I’ve been tracking my heart rhythms with my Apple Watch and I’m pretty much tachycardic all the time. Plus my funny heart rhythm I used to have has come back. I had a 24 hour tape of my heart done in January but never got the results so I just assumed it was fine. But the funny rhythm keeps coming back and my heart rate goes as high as 190 sometimes so I figured I should probably get a GP appointment. I asked my husband to ring and sort it out though because it depends on when he’s able to to take me. Initially the receptionist said there weren’t any appointments until September but a cancellation had come up for next week.

Waiting times of 2 weeks to see a GP are pretty normal on the NHS, but it can be tricky when you have several or chronic conditions. This is mostly because a lot of the time I get told to ‘wait until I see X person/consultant’ that I already see, which can be up to 3 months or more. Then I have to wait for clinic letters to be sent before I can go back to my GP (can take 6 weeks). And if it wasn’t solved by X then the GP might have to refer me to someone else, which means another list. So unless any new symptoms or problems materialise so they’re perfectly timed with my clinic appointments and GP referrals, sometimes I can be waiting over 6 months to see if there’s anything to alleviate symptoms. Which, considering I put up with a lot of pain, discomfort and debilitating symptoms on a day to day basis anyway, it isn’t ideal to have another thing added to the mix.

I still need to see what my endo wants to do with my bone density results, but I’ll wait until I see my GP about my heart before ringing. I have a feeling this will be another thing she wants me to take to my endo…

How I can empathise with pregnant ladies

I’ve got to that age where everyone has got married and are now having babies, so I listen to a lot of conversations between women who are comparing (and in some cases competing about) their pregnancy related symptoms. It dawned on me that, I seem to have a lot of symptoms in common, and a quick google of symptoms tells me the same. So, and it’s written tongue-in-cheek, here’s why having an endocrine problem allows me to empathise with my pregnant friends:

  • Morning Sickness. Thankfully, I don’t seem to have the sickness part, but I do wake up most mornings feeling really sick and it lasts all day. Sometimes I wake up in the middle of the night and go to the toilet convinced I’m going to be sick. And, like a lot of pregnant women find, if I eat constantly, the nausea eases.
  • Hormonal outbursts/irrational crying and grumpiness. Oh yes. Crying because you can’t get the toaster to work? Angry because you hate the irritating thing someone is doing (which isn’t really that bad)?  Yep.
  • ‘Baby Brain’/Brain fog. Story of my life.
  • Dizziness. All the time. 
  • Insomnia. I don’t think I’ve slept for a whole night in years. In fact, my apple watch tells me my sleep quality is usually below 40%.
  • Fatigue. Check. I sleep a lot.
  • Frequent Urination. The more my body struggles, the more I go to the toilet. Sometimes every 20 minutes.
  • Bloating. Random, but yes. I got made to have a proper pat down search at Barcelona airport because I looked pregnant from the crazy bloating but wasn’t, and the woman didn’t believe me. 
  • Bleeding Gums. Could be unrelated, but also check.
  • Digestive problems. You use cortisol to digest your food believe it or not. So low cortisol = stomach issues.
  • Itchy Skin. Some days I want to rip it off, it burns so badly. 
  • Stretch Marks. I can guarantee I have more stretch marks than a pregnant lady. Because I have 4 years of random weight gain and swelling marks as opposed to just 9 months. 
  • Swollen joints. My left side joints swell more than the right for some reason. My ankles are so bad today I had to go down the stairs sitting on my bum. Plus I have weakened bones from steroids, so I’m also prone to stress fractures.
  • Food cravings. I crave salt a lot. I haven’t had any really weird cravings, but I do ‘obsess’ about certain foods sometimes. And I now eat things I hated before and vice versa. 
  • Food aversions. I can’t stand the smell of some things now, it makes me want to be sick. Or thinking about certain foods.
  • Not being able to eat certain foods. I shouldn’t eat some foods because they increase certain levels which I need to keep low. And if you get told not to eat something because of the risk of food poisoning, the same applies to me- food poisoning means a trip to a&e for me. 
  • Not being able to take certain medicines. If you can’t take it because you’re pregnant, it’s probably the same with me too, but because of the interactions it has with other meds rather than it being ‘bad’ for me. 
  • Stuffy nose. I’m not sure if this is hay fever or rhinitis or my body thinks it permanently gets a cold. Could be coincidence but who knows?!
  • Sweating. I dress like I live in the tropics- I’ve been known to walk around in a vest top in minus temperatures. I also sweat for no reason except for stupid things like my body is tired from holding my head up. The fan is my best friend.
  • Fluid retention. Check. I live in trainers now. A bit like the bloating, random bits of me swell up with water weight for no reason, particularly around my middle. 
  • Voice changes. My voice goes a funny pitch when I don’t feel well. It’s a sign to me that I should probably get my backside to hospital
  • Random racing heart. If I hold my breath it goes back to normal. I can get my heart rate into the 160s just because I stood up. 
  • Back Pain. Yep. I can’t stand up for long either. Although at least I don’t have a baby kicking me to add to the discomfort.
  • Muscle cramps and spasms. Particularly in my back and legs.

Wait a minute, I hear some of you saying, she hasn’t mentioned any of the more intimate pregnancy side effects. Well no, I wouldn’t, because talking about your cervix (or whatever) should never be part of ordinary conversation, ever (unless you’re close friends)! Errr it’s completely not the same, I’m sure at least one of you is thinking, growing humans is hard work and takes its toll. I’m definitely not denying that, I’m empathising with my pregnant friends, pregnancy sounds lousy! But remember, pregnancy is about getting a baby at the end of 9 months, would you be happy putting up with it if it was your daily life and had already lasted 4 years? 🙂 

Hormones are funny things. This totally isn’t a pity post or a dig at pregnant women, just my observations and a way to amuse myself 🙂

My week with the NHS: 6th August

Monday

This week was mostly what I call patient admin. Last week I ordered some hydrocortisone through my doctors, but the pharmacy dispensed the wrong brand, Alissa, which can’t be broken into 2.5mg multiples and they only come in 10mg tablets. So I asked my husband to ring he GP to ask for it to be issued again. My husband is set up so he can make some decisions and ask some questions on my behalf for when I’m not able to. It might seem a simple thing, asking for another prescription, but, from what I can gather, hydrocortisone is on some kind of ‘watch list’ for prescribing, which means that doctors have to justify why they’re issuing it. Which is fine if you need it short term, but when you take it long term, you get quizzed an awful lot. Or get a lot of ‘computer says no’. If there was going to be a fight (and there have been many), it was going to be when I’d only asked for it a few days ago and was suddenly asking for more. My husband rang and there was no fight and I’d be able to collect it on Thursday.

Tuesday

Lots of people maybe don’t realise, but not all treatment is available on the NHS. I have chronic pain and my GP said the specific treatment plan for my specific type of pain is chiropractic care and physio. A lot of people might not realise either that you can only get limited sessions of things like physio- it’s not an indefinite thing for most conditions. I had my physio sessions on the NHS (I’ve been referred twice) and didn’t really feel like they were helping much. I can get referred back again for another course, but it wouldn’t be a productive use of anyone’s time or resources.

I’ve been seeing a private chiropractor for about 3 years on Tuesdays and Fridays and it’s the only thing that helps me keep on top of my pain. It’s one of the things that improves my quality of life, but it’s not available on the NHS, which means I have to pay for 2 sessions a week. The advantage is the standard of care is better than my physio was on the nhs (system problem not individuals) and that she’s able to treat my entire body rather than just the thing I went for initially, which an nhs physio would be limited to. This means I could take her my bone scan results I got last week and she’s going to interpret them for me- my GP said it’s not her problem and told me to ask my endo, but it’s not really his problem either. At least this way I can be in a position where I can be informed about my different options before going and asking my GP again.

Thursday

I dispatched my husband to get my prescription, but the pharmacy only had Alissa again. It’s a tad frustrating because they have on my file the other 3 brands I can take but it’s obviously not the really good pharmacist sorting it. The pharmacy say it’s he GP’s fault for not writing it on the script, the GP say it’s the pharmacy’s fault. This time my husband checked before leaving so he could hand it back and the pharmacist will order some more. This is why I tend to put in my repeats 2 weeks ahead of when I need them because between GP admin, pharmacy admin, random errors and supply issues, it does take 2 weeks to sort- this process started 10 days ago. It’s really hard to keep track of!

I finished my thyroid trial

And it was a pretty horrible 5 weeks! My thyroid still works, but it’s sluggish and it’s the bottom end of normal according to bloods. So my endo put me on levothyroxine for 5 weeks to see if my symptoms/blood work improved. I haven’t had the test results yet, but equally I haven’t had a stressy phonecall or letter from anyone telling me that there’s anything untoward, which is what happens within 48 hours whenever anyone runs a cortisol test. I’m guessing it was all fine.

Anyway. I don’t think me and thyroid meds get on. I hated it and felt pretty terrible for the last 5 weeks. More so than usual. I felt more limited by everything, in that things I could manage before I couldn’t anymore. I was sleeping a lot more, I had pretty much zero tolerance to anything that I could have ‘maybe’ managed before and I felt like I had less control over managing my illnesses than before. Adrenal insufficiency is an unpredictable illness and you can do absolutely everything right and external factors you can’t predict change things. But even the things I was trying to preempt seemed to make me sick. It was just a bit of a nightmare basically.

I also had 2 hospital trips during this time, a UTI and I had bad diarrhoea every day. Which, for the people who know about AI causes masses of problems with absorption of tablets, not being able to keep hydrated properly and the fact that being that ill every day for 5 weeks is a stress on your body so requires careful management. I stopped taking the thyroxine, and, apart from my body working out how to adjust again, it seems to have stopped, which I don’t think can be a coincidence. Aside from that, having diarrhoea every day for that long is pretty miserable anyway, let alone when it can also kill you. One thing that I’m massively annoyed about is despite not keeping very much food in me for 5 weeks I somehow have put on weight, whereas before I’d at least been consistently the same weight for 8 months. How is that fair?! Again, I’m blaming the thyroxine…

The schedule I had to follow so I could take it was a bit of a pain and not being able to eat or have steroids overnight just added to generally not feeling well. The only positive thing I recorded from my time on it was that my overall quality of sleep was better than when I stopped taking it. I’m not sure sleeping better is worth the extra myriad of symptoms when I’m awake though.

I’m a bit sad that it didn’t help because if it had it would have been a tiny step closer to getting a slightly better quality of life, which isn’t great right now. But I’m not overly surprised- while my thyroid works a bit, my body is going to be constantly trying to balance itself. The more synthetic things you put in, even if they’re needed, the more it’ll fight back to find that balance. And it can’t possibly find a balance because hormones are designed to change as quickly as the wind can, but they obviously can’t if you only take one pill a day and expect the same results. I suspect all of my symptoms that made me feel so ill were because my body was having a strop at having the thyroxine trying to upset it.

The good news is I don’t have to take it anymore (for now). The bad news is it didn’t work in the way we hoped. Back to the drawing board!

My week with the NHS: 30th July

The posts where I write about my patient experience seem to get the most traffic and responses. And I use the NHS an awful lot, so I have a lot more insight into the way it works and serves patients than the average. So I decided to trial writing a week by week account of how my week using the NHS goes (if I’ve used it). Maybe it’ll help other people or medics appreciate and understand what living with a chronic illness is like.

Monday

My GP surgery last week rang me and said that my GP wanted to talk to me about my recent test results so could I please make a telephone appointment. Yep, no problem. I know that the only reason they contact you is to tell you you’ve got something wrong with you which you didn’t before. Which would probably make the average person a bit anxious but I already knew that the scan was going to show up the fact that I’ve got osteoporosis in some bones at least, so I assumed this is what my GP wanted to talk to me about and to to start the treatment she’d been discussing last time I saw her. Even so, I still got a bit anxious about it.

She was supposed to ring me between 11am and 1pm. I was not having a good week so went back to bed pretty much as soon as I’d had my breakfast at 7.30. But I set my alarm for 10.30 so I’d be at least functioning a little bit should she ring at 11. It got to 1.30 and still no call. So I could have had a longer nap! I rang the surgery and the receptionist said ‘oh no it’s booked for 3.45’ and made out like it was my fault I’d got the time wrong. I asked her why it had got changed and then she admitted that they’d had some problems with the locum and all the telephone appointments had been put into the emergency afternoon appointments slots instead.

My normal GP did ring me a little after 3.45 as promised but started the call with ‘i understand you want to speak to me about your test results’. To which I replied ‘no, actually, the surgery rang me and said you wanted to speak to me’. There was a silence at the end of the phone and she said ‘what test results are we on about?’. I was pretty annoyed by this point because I’d wasted a whole day hanging around and not napping waiting for a phonecall that I hadn’t even asked for and she hadn’t even bothered to work out what test it could be before picking up the phone. She only ordered one!

She eventually found my bone scan results and said ‘oh it’s a long report. I’m not sure what to suggest’ and then tried to read it while talking to me, which didn’t really work. Long story short- she said she didn’t know what to do with me a lot during this phonecall because she’s never seen anyone my age with this problem before and could I take it to my endo. She also didn’t tell me whether or not I had osteoporosis because she couldn’t work it out, so I was still non the wiser. I said it’s not really his job because it’s not Endocrine but I could if she faxed him it because he’s in a different trust and you can only see test results in the same trust they were done in. No, she said, I have to pick up the report and take it to him the next time I see him. Which gives him no time to prepare at all and he’s already annoyed with her because he feels she just passes everything to do with me over to him (which she does). I decided to order my repeat prescriptions while she was on the phone.

In the evening I had to get ready for my blood test the next day. I found my blood form and tried to work out if it was fasting or not but helpfully it didn’t say. Doctors do this a lot, they just leave those boxes blank and tend to hand you these forms as you’re leaving the clinic so you don’t always get the chance to check. I looked at the test boxes that were ticked and he wanted to test my cholesterol again, which is usually fasting, so I decided to fast just in case. The test also involved taking a large dose of my steroid at 11pm and seeing how I responded overnight so I double checked I knew what I was doing from this clinic letter.

Tuesday

I had to get up and leave the house by 7.20 so that I could go do my blood tests (huge challenge for me). Normally, I do my blood tests at the pharmacy over the road so I usually go in my PJs. But because I live in one trust and the endo is in another, you can’t do blood tests except for in the trust where the results are going/their lab is. Which meant a half an hour drive to the hospital (nearest phlebotomist in that trust) and then a half an hour drive back. Except I can’t drive and I can’t safely do taxis in case I flake out and someone needs to inject me (poor Uber driver would get a big tip I reckon). Especially if I’ve not had my morning meds or eaten. Which means my husband had to take me there and back. I have a lot of tests so a lot of the time he drives to work, comes back and gets me later, takes me to the test and then drives back to work. Most have to be done at specific times (most endocrine tests are like that) which means it’s never a case of when it’s convenient for him, which he obviously gets stressed about. Thankfully his boss gives him flexibility when we need it otherwise I don’t know what we’d do. The other irritating thing for him is that he works pretty much next to the hospital I need to be at…

I like this hospital because it’s quiet and there are automated iPad things to check in so I don’t have to worry about standing up in queues for long periods. Plus they’re super efficient here and they actually talk to you rather than just jabbing you with a needle and having a chat with their colleagues. I’ve never had a rude person for anything at this hospital yet. Test done which means I can go home! But before I leave, I take all my meds and eat something. It actually took longer to walk in the hospital to get there than it did to actually do the test. Hospitals are huge places which weren’t really designed with making it easy for sick or disabled people to get around, ironically. Even more of a challenge when you haven’t eaten or had your pills.

Wednesday

I asked a friend to take me to get my bone density report from my GP. I was expecting some kind of summary on the front but my GP had literally given me all of the photos and scales. So I still didn’t have a clue whether or not I had osteoporosis! After a bit of googling and comparing against my last scan results from 2 years ago, I worked out that while I’m still definitely osteopenia ranges, the osteoporosis ones haven’t increased that much just yet, which I’m taking to be good news even if I shouldn’t have anything wrong bone wise aged 31. I spend a lot of time googling and reading about things because no one really tells me the information I need to know but everyone expects me to explain it to the next doctor and be the go between. And lots of doctors have got things very wrong in the past so I like to know what’s going on anyway.

Thursday

I made a complaint with a different hospital about their treatment of me in a&e a couple of months ago. What usually happens is you get assigned a coordinator who investigates and tells you a date they’ll respond by. Then they send you a letter or email with the conclusions and anything they’ll take forward from it. Except no one has responded and it’s a month past their deadline. I hate using the phone so I email them again to chase them.

Friday

I ask my husband to get my prescriptions from the pharmacy for me. Normally when I go I check all the packets to make sure they haven’t given me specific brands of hydrocortisone I can’t take but my husband forgot to do this and I ended up with Alyssa. Once you leave the pharmacy, you can’t swap medications, even if you take it straight back, but while you’re there, you can ask them to change it. Alyssa is cheaper for the nhs but you can’t break it into 2.5mg doses (from 10mg) because the compound isn’t mixed evenly throughout the tablet. So I can take the multiples of 5mg and 10mg of Alyssa no problem but not my 2.5mg doses. Which is why I usually ask for other brands where I can. The annoying thing is that 5mg and 2.5mg tablets exist on private prescription but the nhs can’t afford to fund them because pharmaceutical companies outprice them. A box of hydrocortisone costs about £80 as it is. I’ll have to ask the GP to reissue it- they hadn’t prescribed enough anyway so I still need to ring them to sort it.

A lot of people don’t realise but most of what I deal with day to day is admin surrounding my chronic illness. It can be a full time job in itself sometimes! The other thing to remember is that while it might not seem like massive tasks to do, I have to do it all while feeling ill. Because that’s the whole reason I have to do it in the first place! After my test on Tuesday, I had a bad Wednesday, Thursday and Friday health wise. That’s also why I pace out some of the tasks- I could have done most of them in an hour when I was healthy, but it takes me a while to sort now that I’m not. And I also ask my husband to do a lot of it for me.

A different approach to stress dosing

A couple of weeks ago, my GP sent me to a&e where a consultant and I had a really interesting conversation about stress dosing. It was particularly great because a) he knew what stress dosing was (doesn’t happen often) b) what he said is pretty much the opposite of the recommended sick day rules which the NHS love to rigidly follow and c) he listened to what I said and we discussed it. Discussed being the key word.

My daily, baseline steroid (ie keeps me alive day to day) is called dexamethasone, which is a long acting steroid so it takes 24 hours to leave my system. I take it in 2 doses- 0.5mg at 7am and 0.25mg at 12pm. I’ve had a much more positive experience with dex than I did when I was on hydrocortisone, which is a short acting steroid (lasts about 6 hours) and is supposed to better mimic the body’s natural circadian rhythm.

However, dex is not so good for stress dosing. If you know you’re ill, it’s fine, you can double the dose and it’ll help. However, it takes too long to work so if it’s an emergency, you need to take hydrocortisone. Which is where a whole bunch of maths, scheduling and setting of alarms comes in.

What I’ve found with dex is that doubling the dose doesn’t necessarily work even if you know you’re ill. I fractured my hand and foot so I doubled my dex, but it felt like my body was eating up the dex to heal the fractures and wasn’t leaving me anything to actually be able to function with. In other words, I was bed bound until I figured this out and started adding in hydrocortisone instead.

In the end, after a bit of experimenting, I put myself on my baseline of dex and added in 10/5/5/2.5mg spread or across the day of hydrocortisone. This worked much better until I got a UTI on top of my fractures. Now what? Am I supposed to be stress dosing my stress dose?

Trouble is, there aren’t many people on my protocol. So I asked around and no one really had any ideas except ‘you seem to be managing it fine’. Even though ‘winging it fine’ would be a more accurate description.

This is where ending up in that particular a&e with that consultant proved interesting. Normal advice for sick day rules is double the dose for as short a period of time possible then taper as quickly as possible. This doctor said to increase my hydrocortisone in multiples of 5mg until my symptoms stopped, get 3 days clear of gastro symptoms and then try to taper. If the symptoms came back, increase to the last time I was symptom free and start the 3 day clock again. This makes perfect sense! Most of the time you get told off for even remotely wanting to increase your steroids again when stress dosing, you tend to get told to either lump it and deal with low cortisol symptoms until your body gets used to it (ha) or stop the taper at the point you get symptoms and wait until you stabilise. To be told to increase based on symptoms is pretty different advice. And I liked how he said to increase in 5mg multiples rather than just immediately double everything. I’ve always felt that immediately doubling is too much a stab in the dark because sometimes I don’t feel like I need a whole double dose so just increase it slightly- basically I was kind of already doing what he was saying from my own experiments but he at least was a doctor with actual science to back it up!

I liked being treated like an equal in the conversation and that both of our experiences were valid- mine from first hand experience and his from a medical perspective. It also gave me confidence that what I’ve been doing is right after all!