I sold my car today

I haven’t driven for about two years so I don’t need a car. The last time I drove, I ended up having an adrenal crisis at my chiropractor appointment, we had to call an ambulance and I got blue lighted to resus. I eventually was with it enough to text my husband and tell him I’d gone on a slight detour home, he picked up my car later while I stayed in hospital overnight and I decided that getting stranded places and having to get my car home later was happening too often and I probably wasn’t safe to drive anymore. My illness is too rare for the DVLA to know enough about it but when I potentially had sleep apnea, I was told I shouldn’t drive because I ‘might feel tired’. I think that says it all really!

That wasn’t an easy decision. I can’t walk far and I can’t stand up for long without getting symptoms, so I can’t manage public transport, much for the same reasons as I can’t drive- Factoring in a journey means I can’t do what I need to effectively eg medical appointments and I’m not very safe doing either the outward or return journey by myself anyway. The physical exertion of organising myself has proven to be dangerous too many times for me to do it. Aside from that, it’s too far for me to walk to my local bus stop or train station. And we can’t afford taxis. So my husband and a friend on maternity leave take me everywhere at the moment (thank you!).

But I don’t think a lot of people realise the symbolism behind it. I can’t drive. I can’t take the bus. I can’t go anywhere by myself without having to ask someone to help. I don’t leave the house and go anywhere alone. Can you imagine what that feels like to a) be reliant on someone to do anything? B) not ever leave the house by yourself and have some time to do stuff by yourself? C) to lose all independence? It’s not a case of I’ve just lost my license, which happened before for a year when I had a seizure, I can’t go anywhere by myself because I can’t walk or take transport. This is something elderly people struggle with and they’ve at least got to an age where they’ve had years of independence prior. I’ve lost all that aged 30. It makes you feel really helpless.

It also destroys your confidence. Transport hubs are huge places, so even if I had one nearby, it’s still too much walking. The assistance you get on trains now is very poor since budget cuts mean there aren’t guards on trains anymore, so no assistance. And standing in a queue on a platform is a nightmare when you’re constantly trying to measure how long you have left in you to stand up for before you pass out, you then have to work out tickets and money which feels like it’s in Japanese by this point, then you have to find a lift because you can’t do the stairs, but the lifts are always so much further away than the stairs so do you just try and do the stairs or walk further, what if you can’t get a seat on the train, then you have to ask someone to move and there might be an argument… I purposefully wrote the last bit without decent punctuation so that it might help get across how traumatic I find doing these things by myself.

And that’s why I don’t do them anymore! Because once I’ve tried to contend with all of that, I then have to manage my illness and it fighting back. It’s not a case of it just happening on a bad day, this happens every time I go out by myself, so it’s not safe for me to.There aren’t many more things terrifying than being alone and knowing you have to call an ambulance because death is a real possibility.

1) you have to find someone to help. But you don’t want to annoy anyone or seem melodramatic

2) you need to explain quite quickly what’s going on so that if you pass out, someone might know. But it’s particularly tricky to string a sentence together when you feel like you’re going to pass out

3) it’s easier for me to ring an ambulance because I know what to say. All needing to be done before I can’t function anymore

4) I should also do my injection because that will keep me alive until the ambulance gets there. But it’s a stupid fiddly thing and needles and syringes freak out other people.

5) the whole drama this type of event causes is enough to stress out someone at the best of times. Let alone when you’re alone, not at home and you’re surrounded by strangers. And you don’t make the stress hormone which is what’s trying to kill you in the first place. So getting anxious is the worst thing you can do!

That’s why why I don’t go out by myself anymore. That’s why I don’t drive. And that’s why I don’t try journeys by myself.

So selling my car is symbolic of having lost my independence completely. I lost it a long time ago, but I don’t think some people fully appreciate how losing the ability to go out by myself is a big blow and how big a knock on my self confidence it’s been.

Just some info for AI people: in the U.K., you don’t have to surrender your licence or report it to the DVLA unless you drive a HGV. However, everyone (even people without chronic illnesses) has to make a decision as to whether they are fit to drive whenever they drive. I decided I’m not fit to drive because my AI is unstable and I feel dizzy/fatigued most of the time and I didn’t want to be a danger to myself or other road users.

The difference between mental health & emotions

I don’t really like a lot of mental health awareness campaigns because I feel like they don’t actually raise much awareness (ie they say ‘talk to someone about your mental health’ – what does that really mean?) but also they target the wrong things.

Acknowledging that mental health has a huge impact on physical health is important. Recognising that mental health problems can be more disruptive to your every day life than some physical illnesses is also important. But we live in a country where it’s considered un-British to answer the question ‘how are you’ honestly, and displays and discussions of emotions are actively discouraged.

Instead, when someone is struggling with something in life, things get bottled up and eventually come out in an uncharacteristic (for that person) way. Then other people in their life might encourage them to go to the doctor to ‘get help’ and they’re potentially diagnosed with a mental health problem like depression or anxiety.

But here’s the thing. You can be depressed but not have depression. You can be anxious but not have anxiety. You can be restless but not have ADHD. Those things are all emotions which, as humans, we all experience from time to time. Sometimes they crop up regularly in a short period of time. It doesn’t necessarily mean you have depression or anxiety permanently.

So the first reason I don’t necessarily like mental health awareness campaigns is because they sometimes imply that you’re either ‘mentally healthy’ or ‘mentally ill’, when, actually, somebody might be having perfectly normal and natural emotional responses to something.

Circumstance and situation makes up a lot of how we feel about something. I watched a documentary where a psychiatrist worked with prisoners and she said that part of her job was assessing whether inmates were depressed because they’re in prison, so they’re naturally going to be feeling low in mood, or if their depression was long term and chronic. There were things she could do to help inmates struggling to come to terms with their situation, but she said she treated those differently from inmates with a diagnosis of depression. Who wouldn’t be depressed at some point when they’re in prison? It’s a normal, emotional response to a terrible situation.

Therefore, the second reason I don’t like the awareness campaigns, is because they make talking about emotions and state of mind a way bigger deal than it should be. It should be ok to admit that something is hard or upsetting to someone else without being told to go to your doctor or be told you might have depression. I’m not saying don’t go to your doctor when you experience distressing emotions, but why medicalise something when it doesn’t necessarily need it? People get back ache for no physical reason, they go to their doctor to get it looked over and then they check in with their doctor if they still have a problem in a few weeks- it doesn’t mean they get diagnosed with something there and then.

Medicalising something implies that you should be/can be ‘cured’ of something with medication. Mental health doesn’t work like that, it needs constant work and attention. It’s like going to the gym for 6 months, getting the body of an athlete and assuming that it’ll stay like that for the rest of your life even if you don’t do any more exercise. People with long term mental health problems have to constantly manage their condition in the same way that someone who has asthma might have to. Some periods of time will be better than others and specific things might trigger it, much the same as with asthma, but it doesn’t just go away overnight like a cold does. You don’t have a cold forever just because you’ve had it for a week, and you don’t just get over depression because you did a 6 week counselling course and took some antidepressants.

The third reason I don’t like awareness campaigns is that they can end up trivialising chronic mental health problems in their bid to raise awareness to the masses. If you’ve got severe depression you’re not likely to seek help when you’re suicidal if there are people who seem to be coping with it better than you when they possibly shouldn’t have been diagnosed with depression in the first place. Because the whole nature of mental health illnesses is that it messes with your head and you think you’re not deserving of help at the best of times, never mind when you’re comparing yourself to other people. And, unfortunately, it’s these people who are most active in vocalising about their depression/experiences on social media or in conversation. (I’m not saying it’s a bad thing, I’m just saying it can be unhelpful to vulnerable people).

Because we’re British, we’re supposed to be positive and share inspirational posts and not be negative at any point. Well that’s just stupid. Our bodies wouldn’t be made with the ability to have negative emotions if we weren’t supposed to experience them at some point. It’s healthy to get mad, to cry, to have a rant. All emotions are temporary, even happy ones. It’s when the emotions start to become permanent and prolonged and an engrained way of thinking that we need to check in with our mental health.

Med scheduling

Tomorrow I start my thyroid trial. So I spent a bit of time on Thursday making sure I knew what to do with it/how to take it. I take a minimum of 25 tablets a day with varying doses of the same medications and 16-17 doses of inhalers/sprays per day. Some need to be taken at a specific time, taken with meals, others on an empty stomach, some with fluids, some without. So it’s complicated. My husband puts all my tablets in a dossett box for me because I was finding I couldn’t remember if I’d taken them or not. I also have an app on my phone which has all my meds scheduled, alarms when I’m supposed to take them and then if I don’t tell it I’ve taken them, it texts my husband so he can check to see if I’ve taken them or not. It’s pretty handy actually.

So, with the thyroid trial, my med scheduling looks like this:

6.30am: thyroid meds have to be taken an hour before I eat

7.30 steroids (time sensitive and with food) and morning meds.

12.30 lunchtime meds and steroids.

17.00: evening meds

20.30 stop drinking fluids

21.00 bedtime meds

21.30 night time spray (has to be taken an hour after I stop drinking)

I can start drinking fluids again at 5.30am.

Then I have to also factor in eating snacks at 10-11am, 2-3pm, 8-9pm and sometimes 11pm-12am for my reactive hypoglycaemia. I also eat at other times but those ones are important snack times. Plus I often increase my hydrocortisone steroids (different from my daily steroids).

I’ve kind of got used to it but it wasn’t until I was explaining to someone else about how my scheduling works that they said that it’s pretty complicated. There’s talk of putting me on a medication for osteoporosis which would involve sitting upright and taking it on an empty stomach which would be a bit of a faff! Fingers crossed I don’t need it though…

‘Well, this is a bit rubbish’

I have to send off some medical evidence for my PIP (state disability benefit) application, which I hate doing anyway because it takes me days and brainpower I don’t want to be wasting on boring but necessary stuff. But I also find it a tad depressing.

It’s a bit rubbish really. Obviously I live with my chronic illnesses every day but I only really focus on having adrenal insufficiency, and that’s only because that’s the one that can kill me fast, so I have to really. It’s also the one that is triggered by all the other ones. Some people like to list all of their illnesses on their blogs at this point for various reasons, but I don’t. Not because they’re a massive secret or anything, it’s just a bit rubbish to have it in glaring black and white. And my list of diagnoses is about a page of a4 in normal sized font. I condense it onto an A5 page though to make me feel better 😉

I try to manage them the best I can without it mentally changing my outlook. I’m not going to say ‘without them defining me’, because they do- they control everything I do. Like, literally everything from what I eat, when I sleep, what activities I do, my hobbies, my relationships with people… They don’t have to define the way I think about life though. Everyone has obstacles and hurdles to contend with. Just mine are permanent and usually a bit more drastic than the average person’s.

So usually I try to avoid dwelling too much on exactly what’s wrong with me and what conditions I have. It’s not until someone else tells me what’s wrong with me eg in a doctors’ letter that I kind of think ‘Jesus I look bad on paper.’ It’s probably easier to list the bits of my body which still work rather than the bits that don’t!

I could get angry about it all. Some of my conditions were made worse or I only developed because I had some shocking doctors- my insulin problems for example. I trained to be a teacher and I can’t do that again. Music was everything to me and I can’t play anymore (I’ve tried lots of ways, if I could do it without being in hospital I’d have worked it out! 😉 ) I lost half of my 20s and counting in ‘diagnostic stages’ and on waiting lists for scans and tests. But all that would happen if I woke up every day being angry about it is I would be miserable and still sick. It wouldn’t actually achieve anything and all the people who let me down wouldn’t feel any different, they’d just go on with their lives as normal because, realistically, they’ve probably forgotten about me.

So my current life plan involves get up every day and don’t die. Maybe crochet some animals in between. I’m not on the good career path or life plan I was on before but it’s ok for now. But seeing it all in black and white is, well, a bit rubbish really!

What I Learnt From Watching House

(TW)

It’s never Lupus, steroids are usually involved in every treatment plan, and, failing that, they’ll do surgery on lots of different organs until a cure materialises. Usually because House looked at a tree or some other random object and it reminded him of some bacteria.

I quite enjoyed watching House. Partially because whenever they talked about my medical conditions, it was actually really accurate! Maybe I should encourage my GP to watch it, since she still doesn’t really understand them.

*I’d possibly stop reading now if you don’t like death conversations*

Anyway. I can’t think of another way to say this besides bluntly, so I’ll just come out with it. What I did think about is whether it’s a good thing or not to know when you’re going to die. Spoiler alert: House’s best friend, Wilson, gets cancer and is told he has 5 months to live. So he starts to do everything in his life he wishes he’d done or things he feels he ought to experience.

Is it a good thing to know when your expiration date is? Would you realistically want to know? We don’t talk about dying at all really as a society, but it’s pretty much the only thing that is definitely going to happen in life. One day, everyone dies.

We all seem to carry on with life as though it’s indefinite and we’re immortal. The goal is obviously to end up dying from old age rather than an illness or accident. Having a life threatening illness means I’ve had a few near death experiences and I’ve kind of had to come to terms with the fact that really simple things can kill me very quickly and easily. But that’s not the same as being told ‘you have 5 months to live’. Would I really want to know that my illness will kill me on X date?

So what I learnt from House is, no, I don’t think I’d like to know my death day. Being ignorant about it and living in the present suits me fine. I feel for people who are given a prognosis and a time limit because it must be scary having a countdown. It might feel like I live with a ticking time bomb most of my life, but, to be blunt again, if I suddenly die from Adrenal Insufficiency, I’m not going to be around to have to deal with it! Having a countdown must feel like a lot of pressure to make the most of what time you have left, to do something fulfilling or meaningful with your life, and it’s a lot of panicking and pondering about what happens in X amount of months when you die. If you’re blissfully unaware that the number 10 bus is going to run you over the day after next, you’ll be dead and that sucks, but at least you didn’t spend the next 2 days in fear waiting for it to happen and saying things like ‘this is the last time I’ll do this’, as well as being dead.

Medical science is great and the fact that we can diagnose illnesses and work out how they manifest and control the body is incredible. But sometimes things shouldn’t be messed with because it upsets the balance of ‘natural order’ (whatever that is). Statistics and science can also be wrong- some people get told 5 months to live and survive 5 years, or others 5 weeks. If you don’t know when it’s going to happen, it’s one less thing to worry about. And as no one has worked out the meaning of life yet, I don’t think it makes any difference if we continue bumbling along like we have for centuries already!

I’m doing a thyroid trial

Not a drugs trial, a trial to see what happens to my thyroid. It could be a huge success or make things worse, we don’t know yet!

The endocrine system is made up of glands which tell other bits of the body to produce hormones and chemicals eg your liver or your pancreas. These chemicals then make sure your body is working effectively, so your food gets digested or your kidneys retain water and get rid of waste. These bits of the body send back signals to the glands letting them know how they got on. For example, if your blood sugar was a bit low because you hadn’t eaten enough, a signal would go back to the adrenal gland (among other things) saying that you needed some extra adrenaline and cortisol so you didn’t pass out. Your stomach would get a message telling you you were hungry which would mean you’d eat to correct the problem. It’s all very clever really.

Which means that when bits of the loops get broken, the message doesn’t get through. It’s sat in the outbox, but it doesn’t get sent or it gets sent late, which means bits of the body don’t receive the info or it gets delayed and then the body gets all out of sync with itself. Sometimes it gets routed through a random ‘server’ or different gland and you end up with a half garbled, corrupt message.

In my case, I can make adrenaline but not cortisol, so part of my adrenal glands work, which is usually the way with adrenal insufficiency. My pituitary makes some hormones but not others, and it definitely doesn’t make ACTH which is one of the boss hormones of the body- it tells the adrenal glands and the thyroid what to do. My thyroid does work, but past tests show that it sometimes does the exact opposite of what it’s meant to (although no one has worked out why) and in general its function is low.

The problem with hormones is that you can’t just top them up like you can with other things in the body. If your calcium or iron levels are low, you can top them up with medication quite often on a temporary basis, and the stocks will be replenished enough for your body to function better/back to normal. Sometimes you have to take supplements all the time, but that’s still ok. The ranges for these things are between X and Y and as long as it’s somewhere in the middle, it should be fine.

With hormones, they’re supposed to fluctuate depending on the signals they receive. If you eat a giant pizza, your body will produce more insulin to compensate than if you had a salad. But if you don’t make the insulin, you have to replace it, which is why diabetics check their blood sugars so they know what insulin to give themselves to help keep their body in balance. This is still a relatively new thing though, and there’s absolutely no way to check what your other hormones are doing.

I take cortisol replacement for my body not making cortisol, but it’s complete guesswork- it doesn’t reflect the ever changing hormones in my body at all, so the bits of my endocrine system which do work get mightily grumpy at something foreign interfering and fight back. One of which seems to be my thyroid, in that it’s having a strop and only doing the absolute minimum work it has to.

Why don’t I just take replacements for it like I do cortisol? Because it still works. And while it still works, any replacements I take are going to make it have an even bigger diva strop along the lines of ‘fine then, you clearly don’t need me anymore’ and it’d stomp off and hibernate or become dormant. And then I’d need the replacements all the time.

So at the moment, it’s like being between a rock and a hard place. It would be easier to replace everything with medications because then I’d know exactly what was going in and bits of my body might work better. But, like with all medicine, if you put artificial chemicals in, you’re living on borrowed time. The body wasn’t designed to be on a fixed, medicated regime for hormones and there’s only much you can do before the inbox gets full and it starts sending ‘message failed to send’ emails back.

Anyway, my thyroid trial. My thyroid might just be being bit stroppy but with a bit of massaging of its ego, it could be persuaded to do its thing a bit better. I say could because we don’t know until I try it. What it’ll mean, is taking low dose levothyroxine for a month to see if it improves the function. Then I have to repeat my blood tests to check the difference immediately at the end, and then again a bit later on. It could be it’s so worn out from trying to be the mediator between the pituitary and my adrenal glands and various other bits of my body, that it just needs a bit of a boost. It could be that it needs a bit of a break functioning by itself and needs temporary artificial input. Or it could be that it makes no difference whatsoever and my body completely rejects the new chemical. We don’t know. But it’s worth trying, because if taking replacements takes the slack off it a bit and gives it a chance to recover, it might make all the messages get through a bit easier and at the right time, which could help other bits function better.

It could also be a complete disaster. And hormones mess with everything. I start it in the last week of June. So if I’m a demon for a month or a bit all over the place, this is why! Fingers crossed though!

Easy Friendships

It’s very easy for me to get stressed out by interactions with other people. For lots of reasons: I feel like I’m talking a foreign language half the time so I struggle to keep up; I worry I’ve said something to offend someone or said something I shouldn’t have, even if there’s no evidence to suggest it; I overanalyse what people say to a ridiculous degree but I can usually only remember half the conversation so my mind fills in gaps with negatives rather than what actually happened… not to mention if there’s background noise, some kind of activity involved, it’s hot… lots of external variables mean I can find social things pretty stressful, even if the people are super nice. Sometimes, if I’m having a really bad day, I don’t text or message anyone because if I don’t talk to people I know I can’t misconstrue anything and get paranoid. The problem is usually the way I perceive it rather than anything anyone else has done. And I tend to avoid people who are a bit tricky or prickly anyway.

Why do I do it? Some of it is to do with my mental health and some of it is physiological. And the two kind of aggravate each other in a loop. At social things, I tend to try to put on a show that everything’s fine or I get excited to talk to people. Which releases a lot of adrenaline fast and means I then crash quite spectacularly later, usually about 11pm when my cortisol is getting low anyway and the overanalysing, overthinking and getting paranoid starts.

Today I saw my endo, which, although not social, has a similar trigger. So now I can’t sleep because I’m ‘coming down’ and going over the conversation.

Some people might just say ‘well don’t think about it then’ but it doesn’t work like that. I can do all the rationalising and CBT I want but that’s where the physiological bit comes in- if you were walking down a street and someone jumped out at you from behind a building and you thought you were going to get mugged, you’d have a surge of adrenaline and a stress response. If that person then turned out to be your friend playing a joke, rationally and mentally you would know that everything is fine, but your body would take a while to come down from that. That’s what happens when I ‘come down’ after social things. It’s weird, I know!

So this week I have been grateful and reminded of several ‘easy friendships’. These are people that I feel happy to have conversations with and don’t spend hours fretting about them afterwards. I might get over excited seeing these friends, like I did with some visiting at the weekend, but the come down was less than if I’d been anxious about it as well. I don’t feel like I need to justify what I do to manage my illness or what I’m eating to them, like I sometimes do with other people. I don’t mind asking for help or explaining what I can and can’t do to them. I’m happy to spend time with them even if my husband isn’t around, because I regularly check with him and say ‘do I need to worry that I said…’.

It doesn’t mean that I dislike other social interactions with people, I have lots of very nice friends who are really supportive and I’m slowly expanding my ‘easy friendships’ group the more I build my confidence back up. But it’s complicated and takes time. So thank you to my friends whether it’s been in real life or by text/message who have reminded me that some friendships are ‘easy’ and I can feel like my old self more afterwards again.

Stupid things people have said to me about disability

I don’t have any issues talking about my illnesses, how they work, the impact they have on me and about being disabled. I would much rather have people ask questions and talk to me about it rather than feel like it’s a taboo or something we shouldn’t talk about. Sometimes, though, people say things which inadvertently (I hope anyway) becomes insulting when they probably meant it in a different way. But it’s irritating and upsetting when you hear it. Here are five of the stupid things people have said to me about disability:

1) You’re too too young to be ill/disabled/have all these problems. Surprisingly, this comes most from nurses and medics rather than people outside of healthcare. But it’s so bloody annoying. I don’t like being sick or having a disability but I make the best of it I can. Someone saying that makes me feel firstly like I’ve done something to make my problems worse so am partly ‘to blame’ but also what do they expect me to do about it? To look at my body and ask my illnesses to come back when I’m older? Disability and illness doesn’t discriminate with ages. 5 year olds get cancer and 50 year olds don’t. I already feel like an old woman trapped in a 30 year old’s mind, why make me feel worse about it? And what’s the point in saying the comment anyway?

2) Why bother wearing make-up/ wearing nice clothes/making an effort with your appearance if you’re disabled? Why not? Why does anyone do any of those things? To make themselves feel good. So why shouldn’t I? Yes I might sweat off my make up or the clothes might have to be practical as well as nice and it might take me three times as long to get dressed but do people seriously think that all chronically ill people only wear pyjamas all the time and have to look dishevelled and ill? What does a disabled person look like in their minds?

3) You’re so lucky you were already married before you got disabled. With the implication being ‘you wouldn’t be able to find a husband if you were already disabled’. This gets said an awful lot. It’s so rude. It implies you don’t have any qualities anyone else would like, that a disability makes you unloveable, that you’re unattractive and not worth anything. It also makes you feel like you should be grateful that you have a spouse because you’re a burden and they’re ‘looking after you selflessly’ which is also plain insulting. It’s usually said with the idea that they’re complimenting my husband and how helpful he can be, but it’s actually just insulting to both of us.

4) Disabled people can’t go to university. The amount of times I’ve been told recently that I clearly don’t have any problems with cognition because I went to university is horrifying. Why can’t disabled people with difficulties concentrating go to university? Being disabled doesn’t make us unintelligent. Why shouldn’t someone who is disabled study something because they’re interested in it? Plenty of people go to university and don’t get amazing degrees but they go because they want to study something further or, in some cases, to waste 3 years getting drunk. But that’s their choice. Why cant disabled people do that too? Aside from that, I actually went to uni and got my degree before I developed my chronic illness. So that’s a completely irrelevant comment. It’s like saying to a double amputee ‘you clearly didn’t fight in Afghanistan because you don’t have legs’. People who have disabilities aren’t necessarily born with them, and we do have lives which came before!

5) I really hope I never get what you’ve got. I don’t want to be crippled and have my life ruined like you have. Crippled? Life ruined? Did I say that? No. But thanks for making me feel bad about it. What is so bad about my life that you think it’s ruined? The comment is supposed to be a positive thing, said with a ‘aren’t you good for still living with this illness’ attitude but it’s just insulting. Like most of the comments here, it makes you feel like someone has judged your life and decided it’s not worth it. So it makes you question your existence but it also puts you in this really bizarre situation where you feel like you should be making the other person feel better about your illness, or feel like you have to justify your existence to them.

Sometimes people say stupid things without thinking and the intention isn’t malicious. But if the same phrases keep cropping up, which they do, then there’s something wrong with the way we perceive illness and disability as a society. Disabled people shouldn’t have to feel like they need to prove their disabilities or justify their existence to other people. If you take out the reference to disability or illness from the statements above, would someone still say the phrase to another person? No, probably not.

Fasting Blood Tests

Today I had to do a fasting blood test for my endo review next week. I have to do a lot of blood tests, they don’t phase me at all and it’s not uncommon for me to have to do multiple in one day/week, so I’m pretty used to bruises, being poked and prodded and the ‘sharp scratch’.

Fasting blood tests can be a bit of a pain though. Again, I have to do these pretty regularly, which is fine providing they can actually get blood out of me! I’m very lucky that the pharmacy over the road does early morning appointments with a phlebotomist, which definitely makes it a lot easier. But it got a bit complicated this morning;

Fasting means you have to stop eating and only have clear fluids from about midnight before your test. This can be a problem for me because I regularly need to eat to control my blood sugar and sometimes I eat a lot overnight. Thankfully I didn’t have any hypos or anything remotely resembling a hypo so that wasn’t a problem this time.

I did, however, wake up at 4.30am with the ‘vibrating’ feeling and night sweats which means low cortisol. Usually I’d take 2.5mg of hydrocortisone to tide me over until my morning dose of steroids but I couldn’t because taking my steroids on an empty stomach gives me terrible stomach problems. Which, if they get bad enough, would mean I’d have to cancel the test, inject and go to hospital instead. Usually if I wake up and need a bump dose, I eat a couple of spoonfuls of yoghurt to line my stomach and then go back to bed. I had to choose between having a low cortisol stomach ache and therefore being awake since 4.30am or have steroid induced stomach ache because I’d had steroids on an empty stomach. I decided low cortisol stomach would probably go away once I had my morning dose so I chose low cortisol stomach ache, which has been compared on a pain threshold to a woman having contractions. It’s pretty terrible. But I only had to tough it out for a couple of hours.

The pharmacy is just over the road, but actually that’s pretty far for me to walk even once I’ve had my steroids, without me needing a rest. So it can feel like a marathon. Also, I don’t get dressed usually before my steroids kick in. I’ve been known to go in my pjs before when I’ve had a really bad day.

I also hadn’t eaten anything for a long time. So I was feeling pretty spaced out anyway. And I hadn’t had my tablets. I have a pretty strict regime in the morning and eating an hour later might not make a huge difference to most but it throws me off for the rest of the day. Combine that with delayed tablets and it feels worse.

Blood tests don’t bother me but having someone stab you repeatedly depletes your body of any cortisol further. So having a blood test makes me visibly sweat, shake and go really dizzy because of the ‘stress’ being prodded puts on my body. Unfortunately it just looks like I’m needle phobic, which I’m really not!

When I’m low on cortisol, my entire body starts to clamp down, which makes it really hard to get a vein to bleed. And then the more tries she had to do, the more my body fought back. She thought I was dehydrated but it was mostly low cortisol, which I explained when the lady tried to send me to the walk in for the phlebotomists there to use a butterfly needle or syringe.

It’s actually really hard for me to do a fasting blood test anywhere besides the pharmacy over the road. It’s really dangerous for me to travel far without having had my meds or eaten. I can’t drive or take the bus as it is, and I can’t get a taxi by myself without having had steroids. I can’t walk around or stand in queues because I haven’t had my steroids. The more unwell I get in trying to do the test the more skewed the results will be.

The phlebotomist was actually really good and came up with a supportive plan for me the next time I need a fasting test done. I was impressed because in my mind it’s my problem that my illness has all these limitations and I need the blood tests done, so I’d have to find a solution, even if it wasn’t easy. Instead, she made massive efforts to help make my life easier and was concerned about me. Because my illness is weird, not many people ‘get’ how complicated it can be, but she really did and her plan made sense.I think the other thing is I’ve become a bit immune to testing and what I do to adapt my illness into different situations. When I was explaining it to her, it made me realise that it is pretty complicated and I do a good job at getting on with it, but it’s ok to say ‘well, actually, it’s pretty tricky for me to do that’ rather than just coming up with a solution myself. I was grateful she was so switched on, showed some real empathy and seemed to care about me as a human, when she could have just as easily refused to help and sent me to the walk in 🙂

I’m not hypothyroid (!)

Despite what my health record currently says, I don’t have hypothyroidism. It got added on as a diagnosis a couple of years ago by a click-happy junior doctor and caused mass confusion- neither me or my GP was sure if someone had forgotten to tell me I was hypothyroid and I did have it or whether it was a mistake. After a billion phonecalls (slight exaggeration), repeat bloods and an appointment with my endo, it eventually transpired that it was added in error and it got taken off, with my endo writing in bold on my record ‘this patient does not have hypothyroidism’. That process took about a year because I had to wait until my annual review and once something like that has been added, only a senior consultant can take it off.

Now it’s been added back on again by a different junior doctor after a recent trip to a&e. I’m pretty grumpy about this, which, might not seem like a big deal but here’s why it’s really frustrating:

  1. I have lots of medical conditions as it is. I don’t need any extra padding out my record. Stop trying to give me a condition I don’t actually have for a change!
  2. A lot of the time, my diagnoses are listed in order of severity. Hypothyroidism always goes to the top, even though that isn’t the most dangerous condition I could have anyway, adrenal insufficiency is. Hypothyroidism can kill you, just not as fast as AI. So it’s pretty important when other doctors look at my list that they see the imminently life threatening one.
  3. People have heard of hypothyroidism but not usually of adrenal insufficiency. If we’re going to talk about endocrine conditions when having a consult, I need to talk about and explain the one I actually have a diagnosis for, and the doctor needs to be able to base their consult on this information, not what they already know about my non existent hypothyroidism.
  4. It confuses people. Aside from making it hard for doctors to devise treatment plans, when I’m admitted to hospital, people keep trying to give me thyroxine. It even appeared in the med pot once for my morning drugs, so I had to fish it out and give it back.
  5. I will actually be taking thyroxine for a month as a trial (I’ll write another post). But I’m not hypothyroid. Which makes it more important that people know this so it’s less confusing when I’m taking it.
  6. It makes me look like I don’t know what I’m on about. When you have a rare condition, you have to spend a lot of time advocating for yourself when medics don’t understand/haven’t heard of it/ are following treatment plans from the 1950s. So you need to know your stuff. If I’m sitting there adamant that I don’t have hypothyroidism but it’s at the top of my list of diagnoses, this makes me look incompetent and makes this harder. Because what doctor would add a diagnosis which doesn’t exist?
  7. It shows a lack of attention to detail. Clearly that junior doctor didn’t read my file properly or my endo’s big and bold note. If they got something that basic wrong, what else did they get wrong? People make mistakes, yes, but endocrine is a pretty sensitive system and it’s one you can’t afford to make mistakes in since it can kill you pretty quickly.
  8. I spend (and my husband) a lot of my time doing ‘illness admin’. Sorting prescriptions, scheduling appointments, doing blood tests, ringing clinics and hospitals to be the go between… it’s pretty relentless sometimes. I don’t need any extra faffing because someone couldn’t read or listen properly doing their actual job.
  9. Accurate health records are important. I’m applying for benefit and this complicates it. I’m not lying about my health conditions, clearly, but this phantom condition which keeps appearing and disappearing on my record looks a bit odd and means extra questions and complications. It also could cause problems for things like life insurance applications or if I happen to be abroad and have a thyroid related condition while away needing hospital at any point for the rest of my life- it looks like I had a diagnosis, which if I didn’t declare it (because I didn’t have it at the time) could mean insurance companies wouldn’t pay out. For example, I had a seizure once which got marked down as an ‘unconscious episode- unspecified event’ and it took about a month for me to convince my life insurance company that I hadn’t tried to kill myself, since that’s what they interpreted ‘unconscious episode’ as.
  10. Last time, it involved extra tests to get it removed from my record. I do enough tests and am prodded and poked enough as it is. I really hope I don’t have to do more to prove I don’t have a condition I already know I don’t have.

So yes. It might not seem like a big deal, but, to me it’s extra faff I don’t need. It’s a bigger picture thing, which I don’t think junior doctors always appreciate when they’re doing their admin.