What IV Steroids Feels Like

There was an episode on House where a man has been basically paralysed and wheelchair-bound due to severe lack of cortisol from having undiagnosed Addison’s disease. House gives him an injection of cortisol and he’s able to get up out of his wheelchair within minutes. It makes for good TV, right? The doctor who ‘found’ cortisol said it was like watching Lazarus rise from the dead when he gave it to patients dying and they were up and eating within an hour. It’s like a miracle!

Except it kind of is like that. A trainee paramedic asked me what it feels like the last time I called an ambulance and he was treating me. I’m pretty sure in ‘normal’ people it would probably make you feel sick and dizzy and anxious and have a fast heart rate (because you don’t need it), but this is what it feels like to me:

  • It’s like being in a swimming pool with weights attached to your arms and legs and your head’s underwater and someone’s trying to give you instructions from the pool side and you can’t hear them properly. So you’re fighting against the weight and trying to swim upwards because you can’t breathe. And then suddenly the weights fall off and your head breaks the surface of the water and you can hear what they’re saying, can breathe again and aren’t dragged down.
  • Or you’re lying underneath something heavy and it’s crushing every bit of you and getting heavier so you can’t breathe and the pressure is getting to the unbearable point and suddenly someone pulls off the heavy thing and the pain and pressure goes away.
  • It’s a bit like ‘backwards’ day. You want to move your left arm but your right arm moves instead. Or you go to talk and it’s like being at the dentist after a filling needing anaesthetic and you can’t make your mouth make the words properly. And then your brain starts following what you want it to do all of a sudden and you can suddenly articulate yourself really well.
  • Imagine having the worst flu ever. The type where someone says ‘if you sit up for 10 seconds, I’ll give you £500’ and you just can’t do it because you’re so exhausted. But then you feel like you could do 50 sit-ups for that £500, easily.
  • It’s like watching a film and seeing things happen but not being able to have any control over the storyline. And then you jump onto the film set and can actually be part of the storyline and can change the pathway by getting involved.
  • Or you’re watching tv on a small black and white tv which you have to hit the side of periodically to get the picture back. And then a fairy magics a HD full flat screen and you suddenly see everything in high definition for the first time.
  • It’s literally like a switch. You feel like you’re dying and then you feel a kind of warm feeling and pain gets better, your brain gets clearer, you feel less dizzy and drowsy and you have more energy. I stop feeling anxious pretty much immediately and my ‘old’ sense of humour comes back. IV steroids are amazing. It just really sucks when they wear off because the come down is horrible- like an addict detoxing but worse because you actually need the cortisol to survive. Don’t get me wrong, it doesn’t make me able to function like I used to, but it definitely makes me feel a lot better temporarily!
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    Why aren’t there disabled emojis?

    Today is world emoji day. I’ve had this debate with people verbally before but never written it down. There’s an emoji for practically everything. If you identify as a ghost, zombie, or animal or if you’re in a gay relationship, a black female or a baby boy then there is an emoji for you.

    But there aren’t any emojis representing disability, except for the ‘wheelchair symbol’ mikes down the list.

    There are also aren’t any emojis for people with ginger hair either, mind you.

    Why though? I fall into the invisible disability category most of the time, but where are the wheelchair users, cane users, blind or hearing impaired emojis? And the rest. I read in the news recently that they’re ‘coming’ but considering there’s an emoji for taking a selfie, which is relatively new, you’d think that there’d be emojis for disability which we’ve been seeing for decades.

    The only thoughts I have about it are:

    • People still see disability as a ‘weakness’ so they don’t want to highlight it
    • Others have this silly notion that people ‘identify’ too much with their disability and it becomes their entire being. But people identify as being gay and let it become their entire being too, but that’s seen as ok.
    • Some might see it as poor taste eg making fun of disabilities
    • People are just not equipped to deal with disability. It’s something we ‘shouldn’t be talking about’.
    • To some, disability is seen as a minority. The reality is, it’s only because disabled people tend to be hidden from view.
    • You can’t cure long term disability. Giving emojis is a permanent thing, and in doing so, able bodied people might see it as ‘giving up’. And that makes non disabled people feel uncomfortable.
  • So while I don’t feel the need for an emoji to express my disability, it is unfair that they don’t exist. Sort it out quicker!
  • Half way through my thyroxine trial

    I started taking levothyroxine a couple of weeks ago on a 5 week trial. I haven’t actually noticed feeling any better but it’s been a bit of a funny couple of weeks anyway. Here are my observations so far:

    • Thyroxine lowers your cortisol level which skewed with me a bit to start off with. Well, actually a lot. I contemplated hospital or an ambulance within the first 24 hours of taking it because I was really ill.
    • Then I did some research about the way the packet says to take it and what endos actually say about taking it. So instead of waiting 60 minutes before eating and having my steroids, I waited 30 minutes instead, which made it a bit more manageable cortisol wise.
    • However, you’re not supposed to take calcium tablets within 4 hours of having had thyroxine because it affects the absorption rate. Once I found this out, it helped manage the drops in cortisol even more, but it does mean a lot of extra alarms for meds. It would have been useful if someone had actually told me all this (endo, GP, pharmacy, the patient leaflet) rather than it being down to my research but never mind!
    • I’ve not been to hospital for an adrenal crisis in about 6 months, I haven’t had any significant infections or illnesses in the past 6 months and I’ve never vomited before even with past adrenal crises, and all this happened a week after I started the thyroxine. However, that could all be a coincidence because it was also a ridiculously hot heat wave and I had a very stressful week coming up.
    • Thyroxine makes your bones more brittle and my stress fractures have started hurting again this week. But I doubt that I’ve been taking it for long enough for that to make a difference so quickly so it’s probably more my steroids are wrong because something (maybe the thyroxine) is making my cortisol drop.
    • I cried every evening for about the first 2 weeks after starting it for no reason. Not normal for me! I’ve also had diarrhoea every day since I started taking it. But, again, could be coincidence because of everything else going on.
    • I have been sleeping for longer though. And I think it’s better quality sleep.
    • My husband doesn’t like me taking it much at weekends because I now have to be up and eating breakfast at 7.15am because if I don’t then I end up with serious stomach issues. And I can’t push the tablet time later because that’s a silly idea anyway (better to take it at the same time every day) but my dosing schedule is now so crazy I don’t actually have any other time I can take it so everything else can be taken at the right time!
    • I don’t like not being able to eat or take steroids after 2.45am. Because my stomach has to be empty for 4 hours when I take it but I keep waking up with low cortisol and hypo symptoms and not being able to do anything to fix it. So better quality of sleep for most of the time except for those occasions when I’m awake from 3am onwards.
  • I’ve got another two and a half weeks taking it and then a blood test, followed by my endo review in August. I don’t know if it’s improved my symptoms or not, really because, like I said, it’s been a funny couple of weeks anyway. So I’m open to seeing how the next couple of weeks go and discussing it with my endo because so far I haven’t found it to be either positive or negative particularly. Fingers crossed it sways towards the positive though! 🙂
  • What I learnt from watching ‘Brain on Fire’

    I’ve been doing a lot of lying down browsing Netflix recently so have been watching some random documentaries and films. One of the ones I watched was a film called ‘Brain on Fire’.It’s about a woman who starts to experience neurological symptoms like seizures, absences, psychosis, mood swings and eventually stroke like symptoms. But no one can work out what’s wrong with her and they go down the ‘it’s psychological’ route and try to get her committed to a psych ward. Her parents keep fighting for her and found one doctor who believed her and eventually she gets diagnosed with a rare autoimmune brain disorder. It’s treatable. It’s also based on a true story. The reason I found this interesting was because before I got diagnosed with adrenal insufficiency, I had many doctors tell me that they thought my problems were psychological and refused to treat me- I got made out to be a drug seeker for steroids at one point. Like her, I felt like I was dying and no one was listening. And, in the same way, the only reason I got diagnosed was because one respiratory doctor said ‘I believe you’ and spent 2 weeks running every test possible until a completely random one showed I had adrenal insufficiency, which wasn’t even his field of practice. But before that, I was treated like I was mad. People ‘humoured’ me when I went to a&e for a while, but the more I showed up (every week at one point) and the fact that one doctor wrote about my ‘clear psychological issues’ on my file meant that people became more and more rude and point blank refused to treat me. But even if I was experiencing psychological symptoms, there’s no need to treat me like that, clearly I still needed help which I wasn’t getting. Although, chronic illness humour, it did turn out that the problem was ‘all in my head’ since my pituitary gland is pretty defunct and it’s located in my brain… 😉 It’s still difficult for me to look back and say ‘I was treated badly’, even though I now know I *was* treated badly. It’s left a lot of (now, ironically, psychological) damage about seeking help in healthcare because I really was dying and no one would listen. I’ve always tried to see it from other people’s perspective and think maybe it’s because I didn’t look sick enough, or maybe I didn’t use the right words to describe it, or maybe someone was having a bad day and missed something, or they lacked experience or I said something wrong which threw them… But there’s empathy for other humans and human error and then there’s taking responsibility for something that wasn’t my fault. Watching Brain on Fire meant that I could see some of my experiences portrayed from an outside perspective. And, actually, there were many opportunities for people, whether it be colleagues, friends, family or doctors, to see that clearly she wasn’t right. Yeah, some of her behaviour might have been weird or ‘lazy’, but instead of showing some empathy and sitting down and saying ‘this isn’t you, what’s going on here’, she was told she was being selfish, that she needed to try harder, she was shouted at to see if she would ‘snap out of it’, people were impatient and she was ultimately worn down to a point where even the inherent natural instinct to fight to survive got turned off. But the scary thing is, that her and my experiences aren’t all that uncommon. When doctors can’t find answers, they turn to psychological problems. Lots of people with adrenal insufficiency are committed to psychiatric units first and then are only diagnosed when they’re in a coma. Part of it is that doctors don’t like things they can’t solve, and mental health has a nice broad spectrum, but part of it is that some are too arrogant to admit that they don’t know everything. I find this really baffling in this day and age since more and more people are surviving things they didn’t before which means there are going to be new and rare diseases being diagnosed which we didn’t have before. Therefore, just because it doesn’t fit into one doctor’s experience of illness, doesn’t mean the problem isn’t a physical problem rather than a psychological problem. So what I learnt from watching this film is that I’m not responsible for the way my doctors treated me. Even if I had said something wrong or acted weirdly, they were my doctors and I was the patient- they had a duty of care to me regardless of the root cause and they really let me down. Seeing someone else experience it first hand in visual form (rather than just reading similar experiences) gave me the chance to fully acknowledge that.

    Hello hospital, my old friend

    I’d actually been doing really well this year avoiding hospital. So much so, there’s a new ambulance triage section of the hospital that I hadn’t seen before and my hospital bag had managed to accumulate a thin layer of dust on it, meaning it hadn’t been used for a while. Look!

    Anyway, this week I ended up ringing 999 because I started vomiting. I haven’t thrown up since I got diagnosed in 2014 with adrenal insufficiency. In fact, I haven’t thrown up full stop for about 6 years. So this was new for me. Being sick with AI is a pretty bad sign: you lose fluids and electrolytes fast; it counts as a massive ‘stress’ on the body; you’ve either got a stomach bug which means you’re ill and so need extra steroids, or something else is making you throw up and have an adrenal crisis, which also means you need extra steroids, but most importantly, you can’t keep the steroids in your body *because* you’re throwing up. So being sick usually ends up doing the emergency injection and going to hospital.

    I’d had pretty bad low cortisol symptoms for about a week, but nothing I was doing was helping, despite extra steroids. And there was a bit of a list of triggers which I couldn’t necessarily eliminate:

    – heatwave. Hot weather causes me masses of problems

    – I started levothyroxine which is known to give you an upset stomach and lower your cortisol levels

    – I had my PIP tribunal looking and it was stressing me out

    – some other bits and pieces were making me stressed too

    – I still have stress fractures. Which had been healing but had also started hurting again, which I took to be a bad sign

    I started feeling really terrible on Monday evening and within an hour had been sick. It was actually a bit of a relief to start being sick because at least there’s a clear pathway of what I need to do! So I banged on the floor to get my husband from downstairs, rang 999 and kept being sick while talking to the dispatch. I was pretty proud of my multitasking at this point! My husband went to find my injection for me and started assembling it and I did it once I hung up the phone while he went downstairs to wait for the ambulance.

    You have to move quite quickly, especially as I didn’t actually know why I was being sick at this point. Did I have a stomach bug? Or was it quick onset adrenal crisis? And if so, why had it suddenly got a lot worse fast when I’d been having pretty consistent low cortisol for a week?

    The ambulance came and there was a trainee paramedic so he got taught a lot! The crew were brilliant in the sense that they looked at my info pack and involved me in all of the treatment, which doesn’t always happen. They gave me some more hydrocortisone, the same as my injection, but IV, which works much better. Then we went to hospital.

    The new ambulance triage was snazzy (and had air con- amazing!), but, despite a really good handover from the trainee paramedic, things went downhill from there. When you arrive in hospital with a suspected adrenal crisis (sickness and diarrhoea being the massive red flags), you’re supposed to get IV steroids (which I’d had), fluids, antisickness and assessed by a doctor with bloods done within about half an hour. Obviously it takes time for the bloods to come back, but if you have all the other stuff, it makes you safe until the results come back and we have a better idea of what’s going on. Basically, it’s as life threatening as a heart attack until you know otherwise.

    But it’s down to each individual hospital to have an AI protocol in place, unlike a heart attack where there’s a clear pathway everywhere. And either this hospital doesn’t have one or people don’t know how to follow it because it seems to be happening way too often!

    So I waited 2 hours for fluids and antisickness. No one did my obs during this time either, which is appalling. My husband was going a bit crazy by this point and going out to ask what was going on a lot. I eventually went out and said I was concerned I’d been triaged wrong (because it has happened before) and that I wasn’t in a&e for sickness and diarrhoea but those symptoms were the outcome of my potentially life threatening condition. I’d also continued to have episodes once we’d got to the hospital, which my IV steroids usually stops. So something wasn’t right.

    After some arguments, we got the fluids and antisickness and had the standard argument about my BP not going down in crisis but mine goes up instead. I kept telling the nurses that it’s all very well and good a doctor having reviewed my chart but my BP was sky high and they needed to know that I’m a rare version of this disease and I could still be critically ill.

    After 4 hours a junior doctor came to see me and said ‘so I understand you’ve come to a&e because you’ve got abdo pain and sickness and diarrhoea?’. And also they’d lost my bloods and urine sample so they hadn’t been processed. Then he tried to argue with me about my BP again. He got a (polite) earful and suddenly I got seen relatively quickly again.

    It turns out on top of all the other things going on, I also had an underlying UTI. It can be difficult for me to tell if I’ve got an infection because the nature of my illness makes me feel awful all the time, so unless I have a huge temperature or cough up green gunk, I don’t always notice. But a UTI is hard to spot anyway because my diabetes insipidus basically gives me the same symptoms of having a UTI anyway. Which I explained to the doctor, but he got this confused with type 1 diabetes (which I don’t have) so I gave up from that point. The other thing that annoyed me was he kept saying ‘but your electrolytes and levels are all fine’ when he did get the blood tests back, and he didn’t seem to get that they might be ‘fine’ now but I’d had 2 big doses of steroids and time to recover before they did the blood tests, so that should have corrected any imbalance. They should have been ‘fine’ by that point!

    Everything was just a big fight after another at the hospital and I find it frustrating. I gave them my info cards, the handover from the paramedics was good, I’m a polite patient and answer questions accurately. But I still was having to argue to get the basic care for my condition. And then when I was discharged, I had to argue for them to replace my injection kit because my husband had accidentally bent the spare needle so even though I had the medication, I wouldn’t have been able to give myself another injection if I needed it. I (politely) asked what they suggested I do if I started being sick or having diarrhoea again to which they replied ‘it can’t be that emergent, is it?’. To which I replied ‘yes. It can kill me quite quickly. I’m not keen on testing it though. So can I please have a needle?’. After a bit of eye rolling, I was given one. But why is it such a battle every time? I wasn’t shouting, swearing and throwing my urine sample at people like the drunk guy next door, but I got treated with the same level of scepticism.

    In a way, it’s good I had an infection, because I’d been really struggling to figure out what was making me feel so poorly the last week or so. An infection wasn’t even on my list of possibilities! And since starting the antibiotics and having increased my steroids, I’ve not had the sickness and diarrhoea, so clearly that was it. However, it disappoints me that despite going to a&e frequently the last few years, I’m still having to argue the really basic stuff like fluids and meds, when really there should be a plan in place. I wasn’t asking to jump the queue or to be seen before others, but my illness is highly time sensitive, and having presented with classic adrenal crisis symptoms, I should have had the correct protocol in a timely way.

    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.

    ‘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!

    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!

    Packing to go away

    Next week, I’m off to stay with my parents in Cumbria for a week because my husband will be working late or working away a lot and I can’t stay at home by myself. I can just about manage during the day myself while he’s doing a normal working day, but only because everything is pre-arranged eg all my meals and snacks are sorted, I don’t have to do things like load the dishwasher or tidy up after myself and if I feel really bad I only have to tough it out a few hours before he’ll be home to help me. I definitely can’t stay overnight alone because I’m more likely to have an adrenal crisis at night time where I really would need help from someone else.

    Things are a bit weird at the moment anyway for me. I’ve got two stress fractures which are sapping all my cortisol. It’s hot which always makes things worse. There’s a lot of other ‘stresses’ going on which are also causing me problems periodically. So I’m mostly spending a lot of my time lying down watching tv rather than crocheting, which is a bit sad!

    Anyway, this post is about packing to go away. It’s complicated. I have to take a lot of medical stuff with me, which is a lot anyway but more so because Cumbrian hospitals (or rather hospital- don’t get me started on that rant) are not well equipped and won’t necessarily have the meds I need on site if I have to go, so the more prepared I am the better. The only way I manage to keep some of my independence is by having set routines and aids, all of which have to come with me. Pretty much I’m like a baby- I only really function if I have my routine and my way of doing things with the stuff that’s normal for me. I find it almost impossible to adapt to things which are very similar but not exactly the same.

    But packing is exhausting! And I’m not even talking about the active packing bit of putting things in a suitcase, I don’t even attempt to do that! I used to be a ninja packing. My dad was in the army so I had it down to military precision at one point in less than half an hour. Now it takes me over a week.

    I start by writing a list. Then I spend the next week collecting everything I need and putting it in a pile. So I tend to concentrate on finding 2 or 3 things on my list a day because I can’t manage anything more than that on top of the other things I need to do on a daily basis. My list is on my phone and I can put a line through it but still see it. And it means I don’t lose my list!

    Once I’ve got my pile, my husband will (much to my dismay) throw it all in a bag haphazardly and then my mum will help me get it out at the other end and put it into places I can get to easily.

    It’s hard for me to be away from home because I won’t be near my local hospital, I have to miss 2 Chiro sessions which is the only thing which helps with my pain, everything will obviously be in a different place so I can’t use my routines in the same way, I have to take a whole week of meds with me which my husband has to sort out beforehand into dosset boxes, things like washing and showering are harder so I’ll just do it less often… logistically it’s hard. It’s when I’m not in my own house it makes me realise how much I rely on my ‘systems’ to cope and how vulnerable I am and feel when I don’t have them to fall back on anymore.

    Either way, I’ve got my pile almost sorted so I just need to wait until my husband packs it for me now!

    And don’t worry, I’ll have my crochet packed! 😉