2018: Year in Review

I find people split themselves into two camps at this time of year. People who’ve had an amazing year and achieved lots (but also want to remind you of the downs and how they’ve overcome them), and those who’ve had a terrible year and want it to be over already (listing the bad things that happened).

A lot of the time (disclaimer: not all of the time), both are looking for the same response of being told how inspiring they are. While others (the disclaimer people), use it as a way to give themselves a bit of a pat on the back and reflect. We should definitely celebrate achievements.

I don’t think my 2018 was either amazing or terrible. It happened, there were some fun times and some bad times. But I don’t remember anything particularly standing out. On paper, I think it’d look pretty dull in comparison to other people’s ‘amazing’ years and possibly horrendous in comparison to some people’s ‘terrible’ year. But that’s kind of the point of life: it’s personal; you can’t really compare successes and hardships, no matter how much people compete, and, realistically, you can’t 100% control what happens in life, no matter how hard you try, even with the best laid plans. But you can control how you respond and feel about the things that happen.

Not everything in life is supposed to be amazing. Because otherwise, when your life flashes before your eyes just before you die, you’re going to have a long, drawn out death. And who wants that?! There’ll be highlights, good times, meh moments and terrible things you’d rather forget. But the important thing is to experience whatever form it takes while it happens, rather than setting high expectations for the perfect life, which doesn’t exist.

Otherwise the highs feel really great but the lows feel horrendous. Even the tiny lows. If you know anyone with bi-polar disorder, it’s not fun. It’s too extreme. Which leaves the average experiences in life as the happy medium and your baseline, with slight meandering hills and valleys rather than mountains and ravines.

So my year this year pretty much followed the average path. But here are some things I feel I’ve tried to adopt this year:

I stand up for myself more. Mostly with doctors but in other places too.

I’m less likely to take responsibility for things that aren’t my fault. I used to think that I could always have done something better to improve the outcome, even if the situation had nothing to do with me.

Because I’ve realised that I can’t control other people’s reactions/responses to things. If a doctor wants to be proud and have a strop when I disagree with them, then as long as I’ve said it politely and respectfully, I can’t control if they want to react like a toddler. That’s their problem.

I’m aware that all these examples refer to doctors, but most of my life is spent with medics. Plus it’s a huge thing for me to be able to advocate confidently for myself without feeling guilty about it.

I put in as much effort as I get in return. It’s to do with emotional energy invested in things or people. If I stress out about something which isn’t going to impact on my life for more than a short time, the effort is not worth the gain in return. Likewise with people. Sometimes you put lots of energy in and get significantly less back. The only exception is my niece who shuns me in favour of everyone else, but she’s only 18 months so we’ll let her off 😉

I’m more able to let things go. And if everything fails despite my best, reasonable efforts, then I have my response to it and then let it go. Obsessing about it only makes me feel stressed, anxious and unhappy about it for longer. It doesn’t change what happened.

By the way, if you’re thinking I’m a smug person who practises hygge and farts rainbows, then I’m really not. I hated it when people said things like ‘just let it go’ to me, because it doesn’t work like that. You can say it all you like, but if you don’t feel it in your stomach/core, you haven’t really let anything go. It takes/is taking a lot of practice. But I’m getting there!

Who knows what will happen in 2019? So far all I have are doctors appointments lined up. But that leaves a lot of room for appreciating the normal, everyday things 🙂

My week with the nhs: 17th December

Monday

My GP practice rang again about doing a repeat blood test and my heart rate and blood pressure check. I said I’d already done it though. The only problem is, is that the receptionist doesn’t really know what you need to come in for and when you have a lot of tests, like I do, I could have quite easily been made to double repeat it without realising.

I decided to email my practice manager at the surgery to tell her about the conversation I’d had with the pharmacy about potential issues with hydrocortisone supply following Brexit. She emailed back and said she would help me with it by sending 3 months of prescriptions in advance to the pharmacy which means they could order it in in advance. I was surprised by how easy that was, but, having said that, I haven’t had the scripts yet and there’s still a long chain of people involved. But at least the wheels are in motion.

Tuesday

I went back to the pharmacy to get the hydrocortisone I was owed and to do a blood test. While I was there, I chatted to the pharmacist about what the practice manager had said and he said he was worried about me and the next coming months but he would do everything he could to make sure I had the stuff I needed. This made me feel better and I know he’ll advocate on my behalf, which is great, but if there’s a nationwide shortage, there’s only so much he can do.

I waited for the phlebotomist, who had issues getting blood out of me. She said I was dehydrated until I said I’d had 2 litres of water that morning.

The surgery rang again and tried to get me to do the blood test and bp checks again. Someone clearly hadn’t marked me as ‘done’ on their computer!

Thursday

I got a bit of a confusing letter from the hospital saying I’d been to a clinic (I hadn’t) and my faecal calprotectin results had come back positive. I’m assuming it’s from my hospital admission before I had the colonoscopy. I googled it and learnt that positive calprotectin can be because of inflammatory bowel diseases, like ulcerative colitis or Crohn’s disease. But because it was dated before my colonoscopy, I’m assuming that would be another diagnosing factor. It’s just a tad more confusing because the gastro doc at the time said she was pretty certain I didn’t have IBD. But I guess she didn’t have the test results yet.

The GP surgery rang and said that I needed to go in on Friday morning to discuss my blood test results. GP surgeries only tend to ring you with the results when there’s a problem, and they usually try to book you in with a phone appointment unless it’s complicated or serous. So it was a little bit worrying but I decided to work it out logically before getting anxious about it. I decided it probably wasn’t the rare endocrine tumour blood tests because they’re too complex for my GP so the hospital would have rung me. It was probably, most likely, the liver function tests (LFTs) that they’d made me repeat earlier in the week. Another quick google of potential liver things and I decided I probably didn’t have liver cancer or hepatitis and as I wasn’t jaundiced, it probably wasn’t liver damage. But it still must have been something serious enough for them to call me in so speedily. Although the Christmas break would account for some of that.

Friday

I saw a locum gp rather than my normal one, but this doctor was pretty good! She said they were also confused by the hospital letter but it was possible that I could have Crohn’s disease based on my symptoms and the positive test. But I needed to be referred to gastro for them to investigate. She said that my ALTs (an enzyme produced in your liver) were three times what they should be, but the others were all fine so it’s highly unlikely that my liver is damaged or inflamed, and I’m not jaundiced, but I should have an ultrasound to check. Same with hepatitis, highly unlikely but I have to do the screening to tick a box. She also stopped my statins which I take for high Cholesterol because they can sometimes make enzymes high, and said that if I do have Crohn’s disease, that can also annoy my liver. So basically I have to wait to see gastro and for them to do their investigations.

I liked this consultation because she explained things efficiently but in a way that was easy to understand. I’d already read up about it anyway and worked it out, but the only reason I do that in advance is because a lot of the time doctors throw in a lot of acronyms and numbers and don’t spell things out clearly enough. They might tell you what the problem is but they don’t say anything which tells you how to actually manage or deal with something every day. So the more educated I am, the more I can read between the lines and then apply it to my already very confusing illness. Plus there are so many occasions where I have to explain how something won’t work for me or how I can’t take certain medications because of my adrenal insufficiency so I *need* to know a lot more than the average person anyway.

I also liked it because she had the guts to actually come up with a plan for me! Usually my doctor just says ‘wait til you see your endo’, when not all of it is actually his problem.

Fingers crossed I stay out of hospital over the Christmas period!

Test Results Are Like Buses

You get none that are useful for ages and then you get 2 at once. Short story is I might have Crohn’s disease and some kind of liver thing.

I’ve been having regular tests, scans, samples… etc for the last year/more than a year/I’ve lost track, with nothing really coming back as useful to help treat whatever random illness I haven’t been diagnosed with to add to my collection of current diagnoses. All I ever got was a few infection results and ‘your LFTs (liver function tests)/white blood count are slightly elevated but that’s probably because you’re on steroids’. And then in the last week before Christmas, it was like BOOM, have some positive test results!

Don’t get me wrong, I would rather not have 2 more illnesses to add to my long list. I actually can’t tell you what they are without looking at my list in my phone. But the thing is, I’m sick anyway. I have symptoms which make it impossible to lead a normal life anyway. My lifestyle is debilitated anyway by whatever’s wrong with me, which I don’t think is just down to the illnesses I already know I have. So getting a positive test result is actually a pretty damn good thing because it means a) there might be a treatment for it/some of it b) I might be able to stand a chance in working out how to manage it/them. Even a slight improvement to my quality of life would feel like a huge improvement right now.

I was admitted to hospital twice in November- once for chronic diahrrea in an emergency, once for a planned colonoscopy to try to work it out. So it’s from the first admission and the tests they did there that they’ve now said that my faecal calprotectin is positive. Which means there’s inflammation in my bowel, which could be a sign of Inflammatory Bowel Diseases such as Ulcerative Colitis or Crohn’s Disease. I’m pretty sure I don’t have UC, since I reckon that would have shown up on the short camera test I had in August. The gastro doc was pretty confident I didn’t have Crohn’s either, but she didn’t have the test results yet. So it was a bit of a surprise to get a letter saying some tests indicate possible Crohn’s. Now I need a referral to a gastro doc as an outpatient to see what they say.

The liver thing is because my ALTs (a type of enzyme made by the liver) came back 3 times as high as they should be. ALTs are part of the LFT test. So where people have been telling me for months and years that my LFTs were a bit abnormal because I was on steroids, they might have been wrong, and I might have a liver condition. It’s unlikely *touch wood* I have hepatitis or liver cancer, mostly because I’m not bright yellow/jaundiced. But I still have to do the screening to rule it out. Because they were also pretty sure I didn’t have Crohn’s disease and I might actually have that, so screening is no bad thing. Even if it means more tests. However, my LFTs might be deranged (their word, not mine) *because* I have untreated Crohn’s. Who knows. I do know it’s not because of alcohol, since I haven’t touched a drop in 5 years!

To be fair, I’m a bit of an anomaly anyway, in that my body didn’t read the textbook of human anatomy and decided to make it up as it goes along instead. And also:

– I’m on steroids. Steroids make everything weird, by changing random things in your body to masking other things

– some of the medications for Crohn’s and liver stuff I’m already on by sheer coincidence for other things. So it might have been keeping some of my symptoms at bay some of the time if I do have these new illnesses

– some of the other medications I’m on can make test results ‘deranged’. Like statins can skew your LFTs. So I’ve been told to stop taking them. Except for the fact that now we have to make sure my cholesterol stays normal, which is what the statins were for.

– I probably wouldn’t notice if I got a new symptom. One of the dangers of having a chronic illness which severely impacts your day to day life is that you don’t necessarily notice the tiny symptoms other people get when they start to have issues/early on into illness. Increased fatigue? Pretty normal for me. Interrupted sleep? Again, normal. Headaches, stomach aches, dizziness… all normal for me. So they might get worse if I develop a new illness but I wouldn’t necessarily think ‘oh I feel more dizzy than usual and my skin itches more, maybe I should go get checked for liver cancer’. Because those are also symptoms of my adrenal insufficiency. It’s a fun game.

– I’m pretty good at working out how to make the most of the limited function my body gives me. So some of the lifestyle changes suggested for both conditions I’ve already adopted into my routine, again, by coincidence, because I worked out they made me feel marginally better, even if I didn’t know why.

That’s where I’m at currently. If I do have Crohn’s or a liver condition or SVT (another thing I’m being tested for), or all 3, it would be useful to know and good to be able to look at some options. But I think sometimes people forget that I’m not some kind of medical machine- if anyone else got any of those diagnoses, it would be considered to be life altering and some people would struggle accepting it. And it will still be life altering for me, just I’ve also been diagnosed with X amount of life altering illnesses in the past. While I’m ‘used to’ medical tests, doctors appointments and more pills every day than most people take in a year, it’s still a big deal. I just have a very practical way of dealing with everything, because, let’s face it, if I didn’t, I’d probably be dead by now 😉

My week with the NHS: 10th December

Monday

I repacked my hospital bag today, now that the clothes are all washed from when I was in hospital at the start of the month. A bit like pregnant people, I’ve always got one packed, just in case. Except unlike during pregnancy, mine gets used multiple times a year. Because most of the time I go in as an emergency, it’s got everything I’d need for a hospital stay in it so that someone can just pick it up and we can go. I update it from time to time, so now I’ve decided to start collecting tomato ketchup sachets from pubs so that if I do get fed chips in hospital, they’re not as dry to eat!

Tuesday

Even though the doctors surgery and the pharmacy are only closed a few days for Christmas, I still need to make sure I have enough hydrocortisone to see me through, especially if I’m ill. It takes longer to get a prescription by the time I’ve ordered it, the Gp signs it, sends it to the pharmacy, the pharmacy orders it from the wholesaler, the wholesaler waits for their delivery from the manufacturer, wholesaler delivers it to pharmacy and the pharmacy dispenses it. If there’s a small pause eg Christmas Day, in the chain it slows it down. Ordering involves a bit of maths to work out how much I need. I’m going to include it because I don’t think people realise how much maths is involved!

I need 2 weeks worth of hydrocortisone reserve at my double dose. My double dose is 30+20+10mg per day. So 60mg

60mgx 7= 420mg per week

420mgx 2= 840mg needed but the doctor dispenses by number of tablets, not mg.

Tablets come in multiples of 10mg so 840/10= 84 tablets

The tablets come in boxes of 30. And on my repeats I have 2 set up- 1 for 60 tablets and 1 for 90 tablets. So I’d need 2 repeats of the 60 or 1 repeat of the 90.

I got my husband to ring up to sort it because I’ve had so many arguments in the past with them about this kind of thing that I get stressed out just thinking about it. He got there eventually but the receptionist got confused with the 60 vs 90 and tried to put through 1 lot of 60 tablets. Which wouldn’t be enough.

Thursday

The surgery rang me and said that one of the hospital doctors I’d seen wanted me to do a repeat blood test and a heart rate and blood pressure check. Thankfully, she said I could just tell her what my bp and hr numbers were for the day based on my home readings, rather than making an appointment with the nurse. And the blood test I can do over the road at the pharmacy, so saved me another trip to the surgery. I didn’t recognise the doctor’s name who ordered it, but the blood form said it was a liver function test.

Friday

I went to collect my extra hydrocortisone from the pharmacy, along with the repeats I’d ordered from the week before. The pharmacist had to owe me some hydrocortisone because it was showing as out of stock from the wholesaler. And she hadn’t been able to get my brand that I take. This is where Brexit is starting to have an impact. The brand I take is licensed to be broken into quarters so I can take 2.5mg multiples. But it’s more expensive than the the generic brand, which can’t be broken into quarters, only halves because of the way the compound is mixed. The NHS won’t fund the brand I take when the price goes up because the wholesaler has made it very expensive, forcing me to use the generic brand, which they’ve also made more expensive. In short, I cost the NHS a lot of money. Here’s why:

The U.K. imports a lot of its drugs from Europe through wholesalers which the nhs buys from. Brexit causes a couple of problems: the wholesalers are able to mark their prices up a lot higher for certain drugs because they know the nhs has to buy them, they don’t have a choice. If they make some brands unavailable (ie the nhs won’t pay) by making them so expensive, they can make the generic/cheaper brand more expensive as well and make money there. Because no one really knows what will happen after Brexit, people have started stock piling drugs so wholesalers are saying they don’t have drugs available when they potentially are. If we don’t have an agreement with Europe sorted, they could in theory stop us from importing medications because they don’t have to trade with us. Which would mean limited medications. Even if we do have an agreement sorted, no one knows how long customs will take when we do import, which would affect supply and distribution of medications. Which is why people are stockpiling now. And once we leave the eu, wholesalers can charge what they want for medications which means a massive cost to the nhs. Prescription charges in the U.K. are about £9, but lots of medications are more than that. 1 box of hydrocortisone costs about £80. The way it all ‘balances’ now is that some are cheaper than the £9 charge so the more expensive ones get absorbed. But now wholesalers are starting to charge £10 for something which was costing £2 (according to my pharmacist), so the nhs is losing money. So the wholesaler has made my brand of hc unavailable to my pharmacist due to cost inflation and is forcing me to use the generic one, which still costs a lot but is available for now. But my pharmacist is worried that she won’t be able to get hold of that in the future because of quotas- where the wholesaler limits your order to a certain amount rather than you being able to order what you need.

Her recommendation was to get my GP to write a prescription for 2 months supply at home, just in case of supply issues after Brexit. This is also what the charities for adrenal insufficiency have been saying, but I was waiting to see what happened first before I essentially started stock piling properly. That’ll be next week’s job then!

Ableism and Discrimination

I’m not the type of person who throws around words like ‘ableism’ and ‘discrimination’ around a lot. It’s not because I haven’t experienced either, it’s partly because the norm in society is for disabled people to experience ableist behaviour and I became kind of conditioned to it. The other reason I don’t refer to it as often as other disabled people perhaps do is because I’m very good at managing my disability so if I say I need adaptations or provision made, it’s because I can’t manage it myself.

Ableism isn’t just obvious discrimination eg access or derogatory comments. It can be a lot more subtle than that. Disabled people get a raw deal when it comes to people’s attitudes and ableism behaviour towards us. ‘Well, you should be glad that any provision has been made’ is something that I’ve heard/is said to other people. We’re not talking about ‘hard’ accessibility measures here, we’re talking about very basic needs. Have a look down your high street and see how many premises have slight steps into them or don’t have automatic doors. Streets have some dropped kerbs to cross over, but not necessarily another one on the other side to get back on the pavement again. Or look at this set up in a disabled toilet:

You can’t reach the toilet roll from the toilet, but you can’t even get a wheelchair close enough to the toilet roll dispenser anyway because there isn’t enough room between the sink and the toilet. The emergency cord doesn’t reach the floor and also isn’t reachable from the toilet and the sink is too high to be able to use it if you’re in a wheelchair. Where was this toilet? In a hospital. Where you’d think people would appreciate disability and accessibility requirements. But, you know, disabled people should be ‘grateful that any provision is made at all’ is the general attitude.

I’ve been thinking about some of the stupid things that get said to me. And then I thought about other similar types of discrimination or derogatory behaviour in other groups of people and how it either wouldn’t happen or it would at least be recognised as such. I’m not saying discrimination doesn’t exist in these groups because it does, I’m just drawing a comparison. So here are some of the ableist/discriminatory things that I’ve experienced:

By far the most often thing I experience is having to prove my disability despite having a disabled badge or mobility aid. If I don’t look like I need it or use it in a way that the person finds unacceptable, I get asked to prove it or told I’m using it wrong. It’s a bit like being asked for ID to buy alcohol, being asked to prove your age and then being told the cashier doesn’t believe you and your ID and you can’t buy it. Despite having the right documents. Stupid, right?

Or just having to justify my disability in general. Lots of people question why I do things in a certain way, or try to find where I might be ‘faking’ it by saying things like ‘you were able to do x so why can’t you do y?’. We take it on face value that people are married or single, or any other variant of marital status, but don’t believe people are disabled if they say they are. People are more likely to lie about a relationship though.

Some people are embarrassed by my disability so either don’t invite me to things or say ‘you can only come if you aren’t ill/don’t use your wheelchair/don’t do x’. My illness pretty much dictates everything and I’m not thrilled by it either, but I also don’t pick and choose when to be disabled. Should we expect gay people to only be gay sometimes? (I’m sure some people do expect this but) No, because it shouldn’t happen. Like for many gay people, being disabled is a part of their identity. It’a not something you can switch on and off. It shouldn’t be their only identity but trying to ignore its existence is stupid.

Being ill or disabled is a bit of a taboo. It makes people feel uncomfortable for some reason. So people try to censor you by telling you what you can and can’t talk about. I don’t make every conversation I have about my illness, but because it takes up a lot of my life, it’s going to be something I refer to in conversation. Imagine if you were banned from talking about your religion, political views or even your career. Aside from having less to say, you’d feel anxious about the things you were talking about in case you said something ‘wrong’.

Because people feel uncomfortable around disabled people, they spend a lot of time trying to ‘cure’ you, telling you what you should and shouldn’t be doing. Most of the time I just ignore people, but it’s difficult when someone says ‘if we’re planning on doing x at the weekend then you should do y and z this week to make sure you’re not ill’. Because being ill isn’t allowed either. So not only do I have to get anxious in case I feel ill at the weekend, since the person has highlighted it as a concern for them, but I also have to justify how I manage my illness and worry that if I am ill, it’s because I didn’t do ‘enough’ in the week leading up to it. It’s been said to me more than once that I ‘might ruin things’ for other people. Quite how I would ruin things by being there I don’t know, and if I felt really ill I wouldn’t go anyway. I can’t live like a hermit in case something happens- I can’t predict every aspect of my life and unless you’re planning on banning every person over the age of 50 in case they have a heart attack because they’re of higher risk, it’s unreasonable to do the same to me. No one has the right to tell me how to manage my health. But people still do.

The other reaction I experience quite a lot is the feeling of being invisible. If I use my wheelchair, people talk over my head to my husband. Or last week someone leaned on my scooter in a queue while I was sat on it, like it and I were just an object. Once, someone decided I was in their way while I was sitting in my wheelchair so just moved me without asking. You wouldn’t physically move someone out of the way who was standing, so why do it to me?

Saving one of the best lines for last, ‘I think I’d kill myself if I were like you’. Which essentially says a lot of things: your life is meaningless and not worth living. Ironically, it’s often said because the person wants to say how amazing I am for living with a disability (that’s a whole other rant) and they couldn’t do it. But it has wider implications and hidden ableist connotations, such as being a burden on other people so killing yourself would be ‘better’ for them, that you have nothing to live for because being disabled is considered so terrible, and that your disability is an inconvenience.

Having a disability shouldn’t be difficult to accommodate in this day and age. But people’s attitudes around disability are generally quite short and narrow minded. Of course, I have friends and family who are incredibly supportive and ‘get it’, but I also have ones (and the rest of the world) who aren’t. And some jokes or statements aren’t ever going to be welcome no matter how close our relationship is, because it’s a hell of a lot different having to deal with disability day in and day out than it is for other people to experience it with me for periods of time.

Some things are said or done because, like I said, people, including me, have been conditioned to have ableist attitudes. But in the same way it was ‘ok’ to make racist and homophobic comments in the past, it shouldn’t be ok to make disabled people feel like a burden, invisible or like a marginalised part of society.

My week with the NHS: 3rd December

Compared with the last month, this week was nice and quiet healthcare wise 🙂 But I planned it that way a little bit because I’m getting a bit burnt out by all the appointments and prodding.

Monday

I asked my husband to ring and sort out my monthly prescriptions because I couldn’t get my brain to work to manage the phone but also I’m a bit fed up of the receptionist laughing at me every time I order any because I have lots of items.

Tuesday

Every time I have a hospital/a&e admission, I hand over an info pack that can be put in my chart. I keep it with my medications bag and emergency injection so it’s with me wherever I go. Every time I leave hospital, I have to copy and print everything again, which is a bit of a faff. No one told me to do it, but I find it useful because it has the most up to date information about me in it and tells doctors a bit about adrenal insufficiency. It means if I’m unconscious, other people can also help if they want to. My pack has in it:

– emergency injection instructions with pictures

– my most up to date medications list with dosing times, diagnoses, emergency contact info and my GP and endo info

– adrenal crisis pathway/protocol. Lots of hospitals don’t have one in place. They don’t have to follow it, but it emphasises the severity of the condition

– a list of tests/bloods/checks which need to be done

– ADSG surgical guidelines. There are different steroid requirements for different things and it’s the kind of info that you don’t need until you have the need for it. So I find it useful to have with me just in case. It’s also something else lots of hospitals aren’t aware of. I’ve used it twice so far.

– Hydrocortisone refusal letter from the Pituitary Foundation. I haven’t actually used this yet but I’ve ‘threatened’ it a lot. It’s a letter which says that a HCP has refused to administer hydrocortisone despite being informed of the life threatening consequences and they should sign it and put it in my chart. Most people just give you the hydrocortisone when you ask them to sign it.

– a copy of my most recent synacthen (diagnostic test for AI) test results. You’d be surprised how many random doctors try to tell me I don’t actually have AI or question my steroid dependency. This proves them wrong.

– a copy of my most recent clinic letter from my endo. It depends on what hospital I’m in, but my notes aren’t accessible by every doctor in every hospital.

It’s mostly a faff to print off because my printer is temperamental more than anything!

And that was my very quiet week!

Feeling a bit cheated

Today I’m feeling a bit ‘cheated’ by life because I’ve got a cold. Or I think I have a cold, it’s hard to tell because all my other medications hide things. Someone on Twitter referred to having ‘normal’ illnesses when you’re chronically ill as having ‘muggle illness’ which made me laugh. But that’s what it feels like.

What do people usually do when they’ve got colds to make themselves feel better?

– have a duvet day

– watch crap tv

– keep their fluids up

– take over the counter medicines

– take pain killers for aches and pains

– use a hot water bottle or have a bath

– rest lots

– eat what they feel like eating because that’s what you do when you’re ill

– moan about how their cold is ‘ruining’ their week/weekend and how they’ve ‘not got time to be sick’

The problem when you get a muggle illness when you’re already chronically ill is that you don’t have anywhere to go. For me, I spend all my life on the sofa watching crap tv as it is. I already drink about 5 litres a day so can’t really increase my fluids unless I want to drown myself or turn into a fish. I can’t take over the counter medicines at all because they interact with my other medications and I can only have sugar free cough sweets, which all have laxative inducing ingredients so they’re limited. I’m already on pain killers so can’t take any more of those and a bath would increase my heart rate too much and I’d probably pass out, even if it helped my aches. I can’t eat what I want to feel mentally better because when I’m muggle sick I need to work twice as hard to avoid hypoglycaemia (more bloody maths). So the only thing left is moan about having a cold, which I guess is what I’m doing here! I don’t have time to be normal sick because it’ll take me about a month to recover. And then I’ll probably get sick again.

The problem with normal illness is if you have a volatile and variable illness like mine, you can’t just hide under your duvet and wait for it to pass like everyone else. It takes twice as much work as on an average day. It’s exhausting.

– I have to check my temperature and BP regularly. If either go too high (which is different from normal high), I have to apply sick day rules

– I have to do a lot of maths to make sure my steroid dose is right. Who wants to do maths when they’re ill?

– If I hit certain trigger points on the sick day rules, I have to go to the doctors or hospital

– I have to make notes of all my doses, obs readings and any dramatic symptom changes just in case I do end up at my gp or the hospital

– I can’t just get in bed all day and sleep it off because I have to make sure I keep on top of my snacks to stop any hypos and I have to take my steroids at set times. So lots of alarms.

A cold for me means at least 1 week with the actual cold and at least another 2 weeks tapering my steroids. The other thing to bear in mind is that when most people get a cold, they haven’t been sick and fighting with their body since the last time they were ill- they’ve had a break. With me, I’ve got a cold but I’m already knackered and worn down from being ill all the time anyway. It’s like running a marathon, getting to the end and being told your time didn’t count so you have to do it again. Which is where the feeling cheated bit comes in. I’m worn down anyway and instead of feeling completely exhausted with muggle illness, it would be great to have it go the other way and have a bit of respite from it all for a few days instead!

That’s not going to happen though. It’s not very often I let myself feel sorry for myself for feeling ill but I figure since normal people moan about having a cold and can still continue with their lives for the most part, I’m definitely allowed a day of moaning! 😉

My week with the NHS: 26th November Part 2

You can catch up with part 1 here

Thursday

Today was the day of my scheduled outpatient colonoscopy. Except I had to be admitted for IV steroids because of my adrenal insufficiency, so I had an elective admission to the endocrine ward. I was super pleased that my night nurse (she was amazing) brought me my IV HC 5 minutes early. This never happens! I was so excited I text my husband and my friend and then showed my nurse how happy I was, which both made her happy and horrified that this is something we were all excited about!

Then it went downhill from there. It turned out that the day nurses from Wednesday had given me the bowel prep (laxatives) wrong. You’re supposed to have about a litre of water with the sachets mixed in, but they’d literally given me it in 100ml. No wonder nothing happened! Which meant that whereas this prep was supposed to clear out the last remains of my bowel, it had to basically clear out the entire lot. It would be pretty unpleasant for a healthy person, but that amount of diarrhoea that quickly is really not very good for someone with adrenal insufficiency.

Unfortunately, my amazing nurse had gone off shift and I was left with a newly qualified nurse who wasn’t very confident in his own nursing abilities anyway, but definitely not specialising in endocrinology. I told him a few times I felt I needed a stat dose of IV HC but he didn’t really get why I wanted it and kept telling me he’d spoken to his supervisor (he hadn’t) and they’d said I didn’t need it. In any case, a person with AI is supposed to have 100mg IV at onset of bowel prep, and I’d only had 50mg first thing, so I was already ‘behind’ even if I didn’t think I needed it.

In the end, I got desperate so walked into the nurse and doctor huddle and interrupted them and said I needed IV HC fast. Then the matron tried to tell me off for not asking my nurse, so I had to say that I had, many times and he wasn’t getting it and that if I was at home I’d be ringing 999 and asking for blue lights. Thankfully one of the nurses I’d had before recognised me and said ‘she’s actually an endocrine patient’ and one of the doctors stepped in, listened to what I said about my normal baseline and the colonoscopy protocol and charted what I needed. But it was pretty stressful having to do that, especially because there was about 15 people with various medical degrees looking at me.

When it got to my 11.30 dose, the nurse wasn’t keen to give it to me because I’d already had some a few hours ago. Which I appreciated completely, but I couldn’t get across to him that the stat dose was in addition to my baseline, not instead of. I got frustrated because my bay mates seemed to understand what I was saying but he didn’t!

I wasn’t expecting a doctor review because I was just waiting for my colonoscopy. But I got an endo review with a really good consultant at around 2pm. I liked him because he really knew what he was on about and had clearly read my file so knew I wasn’t a ‘normal’ AI case. I said I was worried about what would happen with my steroids because of the fact that I was due some at 15.30 anyway but also could be having my colonoscopy around then so didn’t want to be over or under replaced. He got the reg to ring the endoscopy unit and they said any time between 2-3pm, so we decided I should have the 100mg now and that should cover me.

Then it got even worse. My nurse brought me the injection promptly, but I didn’t actually get taken down for the procedure for another 3 hours. So I’d been given a massive dose of the stress hormone which my body didn’t need that second, but it geared itself up as though it did which left me a massive, hormonal, anxious mess. And the longer it took for them to come and get me, the less I’d have in my system to actually cope with the colonoscopy, which was the point of the dose.

So I had a meltdown. I hadn’t really been told what was happening, I didn’t trust anyone with my steroids because no one seemed to get it (except the good endo, who’d gone), I didn’t want a colonoscopy anyway but without any info I hadn’t even been able to mentally prepare, they’d done my bowel prep wrong so I was feeling particularly ill and I hadn’t eaten for 24 hours. And I had a lot of stress hormone flying around my system! I insisted they find the endo (I trusted him) and he came back and apologised a lot, rang the endoscopy unit and asked what was going on and managed to get some porters up pretty speedily. I told the reg I was worried I’d have to argue with the on call doctor if I needed more IV HC because they’d delayed the colonoscopy and he said he’d write me up a stat dose to ask for if I needed it. This made me feel better because I was allowed to decide myself rather than having to beg for it.

The porters kept saying ‘yeah but the doctor doesn’t know how we work, he shouldn’t have given you your meds’ when they came to get me. The impression I got was that they didn’t know about my AI and the fact that I should have been in an earlier slot, and they’d decided that as I was admitted, I could do the recovery time on the ward rather than in the unit like the outpatients, and they could finish on time.

The nurse in the endoscopy unit didn’t know about my AI either, which did not help my stress levels. I was stressing because no one was getting that I can die without steroids, half the people weren’t following any protocol and the other half didn’t even know I had AI in the first place. Then when I told the nurse I’d already had the 100mg, she assumed it was prednisone (good grief, that’s even more potent!). She was more worried about my hypos. It wasn’t until she went to check my hospital bracelet that she noticed my medical ID on the same wrist and went to check with the doctor as to whether I could have sedation or gas and air. It turned out I wasn’t allowed gas and air because of my bronchiectasis (which I forgot I had until I read it on the form as a ‘complicating factor’) and I was only allowed a bit of sedation because of my AI.

Doing a colonoscopy without sedation is not fun. Before I let the doctor near me, I made sure he knew about my AI, and told him about me being backwards in that my blood pressure goes up when I’m ill, rather than down. I was pretty forceful with this because he kept referring to my Addison’s disease, which I technically don’t have but it’s close enough. But in those cases, your pressure drops (most of the time).

Once it was over, I got taken back to the ward and was allowed to eat again! And my nice night nurse came back on shift so I told her about my horrendous day for about 45 minutes. Which might have seemed like a waste of time to other people, but I’d been really stressed all day, I was genuinely worried that I might die on a couple of occasions and it had been one massive communication nightmare from the word go. So I needed someone to listen to me, tell me it wasn’t my fault and reassure me that someone was going to look after me properly so I could go to sleep. That nurse made a huge difference even though she didn’t do much medically for me that might. I trusted her so I actually got some decent rest. She even checked my blood sugar without waking me up!

Friday

I just wanted to go home by this stage. I was back on oral meds now so there wasn’t a lot of reason for me to be there. I also had the same nurse as yesterday, but he was being very closely supervised by another nurse this time. And all my doses were given to me on time, so at least he learnt.

I was feeling gross after the colonoscopy but hadn’t been able to shower because of my IV fluids so I went to shower after they detached me. Usually when I shower, I do it in stages and don’t get dressed straight away. But I can’t spend an hour in the shower in a shared bathroom, so I did it a bit quick and got really dizzy and my BP and heart rate shot up. My bay mate got the nurse for me and I asked him to get the doctor. The endo (the one I fell out with before but I actually quite like him now) said my bp was fine until I told him about how I’m backwards, then he said I had to lie down for a bit and if I still felt weird I could have a 5mg stat dose. I was fine after lying down for an hour though.

My bed was needed so I got kicked out to sit in the day room, where lunch was in full swing. It was actually the most ridiculous system I’ve seen for catering, so I’ll write another post on that 😉

My husband came to pick me up but couldn’t find a wheelchair. In the end, he found a porter with a wheelchair who said there was a wheelchair shortage so I could only use it if he took me on it. Of all places to have a wheelchair shortage… in a hospital…! Apparently nurses hide them in wards because they’re so scarce.

I managed to make my escape though and was free!

My weight loss guide

*this is a joke post*

A combination of steroids, not being able to exercise, having to eat constantly to try to keep alive and a just generally broken endocrine system meant that I put on *a lot* of weight. I’m actually double my weight from what I was this time 4 years ago. It’s very easy to look at someone who’s overweight and think they’re lazy, not trying hard enough, not eating properly, not exercising… etc but in some cases, like mine, no matter what you do, your body just doesn’t want to shed any pounds.

Until October, I was carb counting (as per my endo instructions) and trying to exercise within my limits but didn’t lose any weight. In fact, I was gaining weight. So I gave up stressing myself out about it because I was doing all I could and nothing was working. My body literally does the opposite that it’s meant to, so I had a ‘f*** it’ moment and purposefully started doing the opposite to what everyone else does to lose weight. And then I suddenly started losing weight… which was very odd! Since the last week of October, I’ve lost 4kg. That’s pretty good going! Either that or I’ve got a tapeworm or some rare rumour that’s making me lose weight. But I doubt it *touch wood*. So here’s my guide to how I did it:

  1. Buy lots of new clothes. I hadn’t bought any in about 4 years, so I bought some new ones. Now a lot of them are too big!
  2. Eat more frequently. I decided that trying not to snack between meals and only eating at mealtimes unless I was feeling really awful was wearing me down. So if I’m hungry, I eat, if I’m not, I don’t. I usually eat every hour.
  3. Eat a lot of salt and vinegar Pringles. I have huge salt cravings (very common in AI) and eating crisps helps my random heart rhythms stay more regular. Salt and vinegar Pringles are the best for helping with that. Crisps obviously have carbs in them so I wasn’t eating much of them before.
  4. Take double steroids. For some reason, I lose weight when I’m on double my steroids and gain it when I’m on my baseline. It’s supposed to be the other way round. Go figure. I’ve been on double steroids a lot recently because of hospital admissions.
  5. Eat a lot of cheese. Cheese seems to stop some of my hypos/hypo feelings. It’s my new friend. Failing that there’s always Pringles!
  6. Stop exercising. I’m doing less walking than I was before because I’ve now got my scooter. Since I stopped trying to exercise, I’ve lost weight. I’m obviously still doing my physio.
  7. Lie down a lot. Sitting up makes me tachycardic. So I lie down a lot to keep my heart rate vaguely normal. But obviously I’m not moving around as much, so I’m not burning any calories.
  8. Stop counting carbs. I’m supposed to eat 60g of carbs per day. I know I vaguely eat around that each day but I don’t count it like I was before. Which generally makes mealtimes less stressful since I don’t have to do copious amounts of maths whenever I eat.
  9. Drink more coke. I feel sick pretty much all of the time, and drinking coke and eating Pringles is the only thing which helps really. I was trying to drink less Coke Zero because I was worried about the crap I was putting in my body, but since I’ve been walking a fine line with all of my gastric issues, I stopped beating myself up for it and drink it when I feel really bad. Which is most days.
  10. Eat during the night. Again, I was trying not to eat overnight for so many reasons. If I wake up feeling bad, I eat. Usually Pringles!

This post isn’t sponsored by Pringles, although it would save me a lot of money if they gave me free samples! Having written this post, I’ve probably massively jinxed myself and will have gained 4kg back again overnight. Fingers crossed not. It might be small progress, but considering I’ve been putting on weight steadily for the last 4 years, I’m pretty proud of it!

(End note: what I suspect was happening was my body was constantly in some kind of fight or flight with peaks and troughs of blood sugar. You won’t lose weight if your body thinks it’s in crisis/at risk of dying. Eating more regularly keeps it more even, meaning it can function better and actually do what it’s meant to! That’s the only theory I can come up with anyway.)

My week with the NHS: 26th November.

Monday

After getting an appointment letter through from my endo for a slightly different clinic than normal, I rang his secretary to make sure I was in the right one. Like I thought was the case, they were struggling for appointments, so rather than me having to wait ages, they’d got me into a different clinic but seeing the same team.

I also decided I should probably ring my GP and order some more hydrocortisone and another injection following my hospital admission. Every time, the receptionist says the same joke about how many prescriptions I have. It wasn’t funny the first time and isn’t funny now!

Tuesday

I’ve got a colonoscopy booked for Thursday but haven’t had an appointment letter or any patient info through. According to my google search on what to do for bowel prep for a colonoscopy, today I follow a low fibre diet. It’s not overly compatible with my low carb diet but as I haven’t been sent any info about the procedure or what I should be doing, it’s the only thing I can go off.

Wednesday

I’m not entirely sure if I should be fasting or not for my colonoscopy which is booked tomorrow, so I eat breakfast according to the google sheet and decide not to eat anything else until I speak to someone at the hospital. Colonoscopies don’t usually require an overnight admission, but because the prep involves laxatives and it’s an invasive procedure, my adrenal insufficiency means I have to be admitted so I can have IV fluids and steroids to keep me safe.

I get to the endo ward at the hospital, and like I thought would be the case, no one was expecting me. A student nurse rings around and manages to get me a bed on one of their bays sorted. In the meantime, I get put in the day room to wait while they (presumably) kick someone out of their bed. Day rooms are supposed to be places where patients can go to get off the ward and start trying to do things for themselves again before discharge. This is what the endo one looked like:

More of a storage room/place to put broken things than anything else. After a couple of hours I was given a bed:

But it took another couple of hours before I got given a mattress! Lunch came round and I was given a jacket potato and beans (because that’s what the person who was in my bed the day before ordered). I said I couldn’t eat it because I thought I was on clear fluids only. The healthcare huffed a bit, went to check with my nurse and said I could eat it. Then a doctor came and I checked with him and he said I could. I still wasn’t convinced. No one really knew why I was there and kept saying different things about bowel prep anyway. After a different nurse came in and I checked again and she said I could eat it, I just ate it! I was hungry and I’d checked a million times!

My nurse for the day came to admit me properly with the questionnaire and said how ‘naughty it was of the gastro department to just let me turn up unannounced’. I got a bit grumpy about this because people kept saying it to me as if it was my fault, but all I’d done was what I’d been told to do when the endoscopy dept rang me- turn up to the endo ward at 10am. She also claimed she’d never heard of adrenal insufficiency, which is ridiculous because I was also her patient a couple of times less than a month ago, and I’d explained it to her then. So I wasn’t holding much faith in any of her advice!

The junior doctor came round with the endo consultant I’d fallen out with last hospital admission. Except this time he listened to what I had to say, offered his opinion and we came up with a plan for steroids for the colonoscopy together. Much better.

Because I was there electively and not under quarantine, I was actually allowed to leave the ward! Usually I’m not well enough to, so this was a huge novelty! My nurse had printed me out a leaflet from this hospital about bowel prep and it said I could eat jelly and clear fluids for the next 24 hours but shouldn’t eat anything else (so I definitely shouldn’t have eaten the jacket potato then!). So I went to the shop to buy some jelly.

Later, she brought me 2 glasses of bowel prep laxatives. Except I drank them and nothing happened! At teatime, I was told I could eat soup because it was liquidy and special hospital soup. So I had some chicken soup.

It was pretty grim but I was worried about my blood sugars dropping so I was eating anything they were letting me. Surely they must be getting it right by now?!

I was just getting some more soup when my night nurse (who was amazing) said she didn’t think I should be eating it and took it off me. But she actually went and rang the gastro department who said I definitely shouldn’t have been eating it and should be clear fluids only and no jelly. She also hung a sign over my bed so there couldn’t be any more confusion. I’m not entirely sure where the day staff had got their info from but it was clearly wrong.

The rest of the evening I spent crocheting and chatting to my bay mates. I showed them how to work their TVs and we all watched Mrs Kaur attack the various people who came to see her with her slipper and try to bite a nurse (she was delirious). One of the doctors I had last admission popped in and I sneakily said that I still had his blood form he wanted me to do as outpatient, but I’d ended up in hospital again too quickly. He had to put a cannula in anyway so he did the bloods for me at the same time. Sometimes it pays to be in hospital enough you get familiar with people. This meant I only needed to get stabbed once and saved a special trip and an extra appointment.

One of my baymates started to be sick but the healthcare we had that night was pretty grumpy and unsympathetic. And didn’t bring her any sick bowls. So I helped sort out my new friend since she hadn’t eaten for a few weeks and was looking grey. I felt bad because I had to ask if she was contagious since my AI means I can’t be around people who are vomiting, but she wasn’t. Mrs Kaur decided to start doing some rhythmic chanting which kind of added to the chaos.

At some point, I’d said to my night nurse about what I should do if I have a hypo while I’m meant to be on clear fluids only and she said she’d sort it if it happened and made a note to do regular blood sugar tests. I ended up having a hypo around 2am and I had to have glucose tabs and sugary tea. It was really lucky my nurse was on top of it because she woke me up from the hypo I was having to test me. I’d gone to sleep/passed out because I was feeling really crappy from not having eaten anything for hours- bearing in mind my reactive hypoglycaemia means I have to eat every hour or so anyway. I’m not convinced another nurse would have been quite so on the ball since the day nurse didn’t seem remotely concerned about any of my endocrine conditions, despite it being an endo ward!

Thursday turned out to be a pretty horrendous day, so I shall cover that in part 2 of my week!