When Your Doctor Can’t ‘Fix’ You

If you have a long term condition, you get taught how to manage symptoms and most of the ways it manifests by medical people, but you learn most from experiencing different scenarios and working out what works for you. In the same way that not all size 10 clothes fit every size 10 woman, everyone is different, so logically it makes sense that treatment plans can’t be 100% exact for every scenario for every person; the plan is developed from what works for most of the people based on research and doctors’ experience. 

But this quite often leaves patients with this feeling of responsibility and pressure. Because things don’t go to plan in life or you get it wrong (hey, you’re a human), you think that it’s your fault and take responsibility for it when it’s not your fault. There are obvious times when it is your fault e.g. Not taking medication for long periods, doing things which you know exacerbate your condition, but if you’re a ‘good patient’, it quite clearly isn’t ‘your fault’ if things go wrong and you’ve tried your best. 

If you spend a lot of time with medics or in hospital, you start to get a bit of a weird thought process and try to think ‘what would my doctor do’, partially because you’re trying to avoid medical intervention at all costs, but partially because it helps with the ‘not trying hard enough’ feeling. But patients aren’t doctors, so we shouldn’t be trying to second guess things and treat ourselves without seeking proper help if we need to. That’s where people with chronic illnesses tend to run into problems- seek help too often and you’re regularly told you’re not ‘managing your illness well enough’, but if you don’t seek help you’re being irresponsible and ‘not managing your illness appropriately’.

Doctors, I’ve discovered from experience, spend a lot of time telling the patient it’s their fault or they should manage things better. It’s taken a while, but I think it comes down to two reasons:

1) lots of patients lie to them so they assume all of us are liars.

2) doctors don’t like not being able to fix things.

The first point shouldn’t happen but it does. Lots of patients do lie and that makes doctors wary. I can appreciate that but it still shouldn’t affect my care just because the guy before lied through his teeth.

The second point is more complicated. The reason people become doctors is because they want to help people. It’s in their nature to care. They want to make a difference. So it must be bloody frustrating for them for a patient to keep coming back saying ‘nope I still feel crap’ and them not knowing how to fix them. People expect their doctor to be able to fix them and wave a magic wand. So not only are the patients worried that the doctor is blaming them but the doctor is also freaking out about the patient blaming the doctor. But because no one sits and communicates that to the other, you can sometimes hit an impasse. (Although it is worth pointing out that some doctors are just uncaring individuals who want you out of there as quickly as possible because they really can’t get over point number 1 above. But that’s not every doctor). 

The doctor might be out of their depth or not have any expertise in your condition. In my case, my illness does what it wants and doesn’t follow any of the ‘normal’ treatment plans that everyone else can manage on, it’s like a rebellious teenager and does the opposite. Which doctors are struggling to work out. Some of my doctors put all the blame on me and kicked me out, some told me it was all in my head, a few thought I was lying about it and a small proportion of very good doctors admitted when they didn’t know but said they would try to help me anyway. 

Those doctors are the best because it lifts a weight off your shoulders. Someone is acknowledging that it’s your stupid body that’s causing problems, not you as a person. That it’s a challenge but they’re not going to ditch you and leave you to manage by yourself, telling you that ‘everyone else managed on this plan do why can’t you?’. That they’d rather clear their schedule and spend an hour with you trying to work it out and prevent unnecessary emergency admissions than throw some tablets at you and say ‘work it out and get on with it’. 
Doctors don’t like the fact they can’t fix everyone, but uou only make break throughs in medicine because people and illnesses don’t conform to the norm and research or discussions take place. So while it’s annoying being an anomaly/medical mystery/complex case, it actually could benefit future patients (if the doctor is one of the good ones). It sucks to be chronically ill, but at least if you have to be constantly sick, you may as well be a limited edition version so that your illness might help someone else in 20 years time.

That’s what I keep telling myself anyway 😉 

‘Stressful’ Situations

This is a really hard one for people who don’t have Adrenal Insufficiency to understand and empathise with. And, to be honest, I would have struggled to before diagnosis too. A stressful situation for me is not the same as for other people. No amount of ‘getting a grip’ will help me. I can’t mind over matter it. 

The first thing to appreciate is the fact that stress has both a psychological and physiological response in humans. So in a ‘normal’ person, they might experience psychological symptoms of anxiety, nervousness, low mood, irritability or emotional outbursts if they are under a lot of stress. And these symptoms, if not dealt with over time can manifest physiologically in the form of visual disturbances, migraines, stomach ache, vomiting, cramps, shakes and tremors, dizziness… The list is different for every person. However, because of the way our fight or flight mechanism works, the initial psychological response to stress and the adrenaline release allows people to function better temporarily in order to get past or overcome the stress at hand. It’s what helps you run away from a bear and climb a tree if you need to. So people can achieve a lot while they’re at work but then feel absolutely knackered as soon as they walk through the door. Prolonged living at a high level of stress is what brings on the physical symptoms.

On the other hand, someone with AI doesn’t have that fight or flight response which allows us to power through and crash and burn at a time which suits us. We can’t ignore our physical symptoms because our bodies perceive stress as having been living at the prolonged stress level for years, even if the ‘stressful thing’ only happened a few seconds ago. We feel like we’ve been running from the bear for about 3 days. This is because we already have depeleted levels of the stress hormone, cortisol. When the bear starts staggering out of the bushes, bodies are supposed to release a lot of cortisol very quickly to get you into running mode. Ours doesn’t. It uses up what’s left in the tank and then doesn’t make anymore. That’s when we get the visual disturbances, migraines, stomach ache… etc which everyone else might get further down the line, except we can experience all of those in a matter of minutes. If other stressful things happen, we don’t take more meds to compensate or we don’t remove ourselves from the original stressor, that’s when it becomes life threatening. 

Realistically, I’d be saying ‘hold on Mr Bear, chase me by all means, but let me do my IM injection and stress dose and then I’ve got maybe a little bit of a chance in keeping up with the others running away.’ I’d get eaten basically!

All of this means that ‘stressful’ things to me are not what other people would consider stressful. There are many physical stressors to take into account, but these ones are purely emotional or psychological.

There’s the obvious ones like bereavement or serious shock. You know how people faint when they find out someone dies? But they usually come around? That’s the body draining of all cortisol (among other things) and fainting is the body’s way of righting itself and making more to help the system cope. Unless you stab me with my injection, I wouldn’t ever wake up. 

Another obvious one is confrontation or arguments. That seeing red or pounding in your ears? That’s your fight or flight. I get that but then I also feel like I want to be sick and pass out at the same time. I don’t even mean full on blazing arguments either, I mean basic things like someone being rude to me even if I haven’t done anything wrong. I find it hard to stand up for myself because of the reaction it has in me. I choose my battles.

Emotions in general. Everything feels exaggerated, even happy ones. Pregnant women spend a lot of time blaming their hormones or crying for no reason. It’s similar for me. Except if I cry too much I can make myself seriously ill, which then causes me more problems. This gets further compounded by the fact that low cortisol symptoms usually include depression, anxiety or paranoia, which cause ‘stress’ which causes more of the depression, anxiety and paranoia. Fun, right? 😉 Excitement also causes problems. Sometimes I find talking too animatedly makes me feel ill.

I don’t find practical jokes funny. If they’re designed to scare or get a specific response, my response would be adrenal crisis 9 times out of 10 rather than the hilarity that others would want. 

Information overload. Many of us have issues processing sound and light and noise quickly. So lots of that in one go or having a lot of verbal or written information given to us can trigger the non-existent fight or flight. 

Changes to plans. Because we spend so much of our time trying to manage our emotional and stress responses, we tend to overplan so we know what to expect. So on a bad day, changes to plans or the unexpected does actually count as a stressful event. 

There are probably more but I can’t think of them right now. We can learn to manage our emotions as best we can, but once the stress mechanism is triggered there is only so much we can do to control the response. It’s physiological as well as psychological. Telling me to get a grip will make it worse (hello paranoia). Shouting at me will make me like a red rag to a bull and it’s a slippery slope. It takes us a long time to recover. I’m talking hours and sometimes days depending on how many stressful things happened in a short period of time and how bad they were. 

Part of me finds all of this fascinating because the body is actually an incredible thing. But the other part wishes I hadn’t had to learn about it through experience! 

I don’t care how often your child poos

If you’re an easily offended person or a parent having a particularly bad day then maybe skip this post or save it for later, although it is intended to be humorous! 😉 

A few weeks ago, I wrote a post about being questioned (interrogated) about my child(less) status and the circumstances around it. Lots of people messaged me to share their experiences, and it got me thinking a bit more about conversations I have with some mothers who have children at social things. Don’t get me wrong, I actually enjoy playing with kids and talking or hearing about the funny things that they do- but they have to actually be funny. Sometimes, parents get on a one track mind, and think that because they love talking about every aspect of their kids’ lives, other people do too. Or maybe it’s because they feel that they have little to talk about besides their kids, because they spend so much time with them. Either way, if you don’t have children, it can make you feel a bit awkward/irritated/bored/frustrated/grossed out…. after a while:

  1. If you have chosen not to have a baby, then it’s unlikely you’ll want to talk about the things I’m going to mention in this post. That’s why you don’t have any kids of your own.
  2. If you can’t have children for medical reasons, it’s pretty insensitive for the parent to talk incessantly about their child (NB I didn’t say not talk at all, I said talk incessantly).
  3. If you can’t have children because your situation doesn’t allow for it e.g. you’re single, then it’s also pretty insensitive for the parent to only talk about their child.

Here are some conversations or scenarios which come up which make me a tad frustrated:

The child doesn’t have to be the focus of everything.

Kids take up a lot of time and energy. They require a lot of attention. I do like playing and interacting with children. But sometimes, it can feel a bit forced. I’m a big fan of children being allowed to choose who they interact with and have affection for for themselves, so I won’t hug or kiss your child even if you tell us both to if it clearly makes them uncomfortable. If they don’t want to play with me and want to go off and do their own thing, I don’t mind, it’s their choice. You don’t need to demonstrate their new ‘tricks’ to me. Also, photos. Believe it or not, it’s possible to take a photo without your child being in it as well. If the photo naturally is set up to include the child then no problem with that, but I have been told more than once that we can’t take a photo until X wakes up from their nap because they *need* to be in it.

Gifts with kids’ faces on them aren’t cute.

Ok, they are if you’re related or you’re a godparent, but have you ever considered how weird it is to give a mug (or whatever) with your baby/child’s face on it as a Christmas present to someone who doesn’t have kids? Firstly, that mug won’t ever come out of the cupboard except maybe when that parent comes over because it’s a bit creepy offering a mug with a child on it to someone visiting, especially if all of your friends with children do it- lots of kids’ faces on different mugs in the cupboard looks seriously dodgy to me! Secondly, I’ll point out the sensitivity/not wanting kids aspect again, and thirdly, it’s a pretty thoughtless present in general. It’s not specific or personal to me and requires very little thought on your part.

Don’t use your kids as an excuse.

I hate hearing the phrase ‘baby brain’. And before anyone says it, I actually do have ‘baby brain’ as part of my condition, but I work round it or I apologise and say ‘I forgot’. Using your kids as an excuse for not doing something/failing to reply to a text/not sending a birthday card… etc isn’t fair. I don’t mean ‘my kid got sick at school so I had to cancel our plans to go get them’, that’s obviously a justified thing and isn’t an excuse! Forgetting is human and is allowed every now and then. Using the fact that you have children as a get out of jail free card isn’t. How long are you going to keep that up for anyway, until they’re 18?

‘You don’t understand, you’re not a parent.’

What exactly do I not understand? I have people in my life I care about who I would want to protect or help at all costs. I’m an auntie. I interact with children a lot. I used to be a teacher. Hey, I even don’t get more than 4 hours sleep most nights and sometimes don’t sleep at all. I have empathy for others and I listen. I’d get it if this phrase was used in relation to something that I actually couldn’t understand, but it’s not, it’s usually used after the excuses mentioned above.

Selling parenthood to me.

Another thing that comes up a lot is the notion of not fully appreciating unconditional love until you have a baby (which I can’t understand because I’m not a parent…), which is usually followed by some kind of gushing about how amazing parenthood is. I refer you to points 1-3 above. Talking about kids is fine, I like that. Gushing for hours on end is not fine. Who’s it for anyway- are you trying to convince me that parenthood is great or yourself? If you want to moan about your kids, I’m fine with that, you don’t have to pretend it’s all lovely if it’s not!

You don’t deserve a medal for being a parent.

I say moaning about kids is fine, which it is, but not constantly. The impression I get at the moment from reading social media and blogs is that some mums think that they deserve some kind of medal because they’re coping with kids. Parenthood isn’t an illness or a burden or a cross to bear. People have been having kids since time begun. I completely agree that it’s challenging and hard bloody work and sometimes you must be tearing your hair out, but you are not the next Virgin Mary nor is your baby the new Messiah.

You’re not better than me because you have kids.

You don’t suddenly get an office with windows and a sofa type promotion above other humans because you’ve had a baby. It’s not a sacred club that people are invited to join. It’s life. Some people really look down their nose at me because I don’t have children and they do, and I can never work out why! It makes me feel like a failed human being, even though I like to think I’m not!

Not taking an interest in me.

Some parents get so focussed on talking about their kids that they forget to ask how I am or what I’ve been up to. It’s pretty rude, particularly if the conversation about their kids isn’t interesting. I went out to lunch with some friends and their babies a while ago and not one of them asked me a question about me, even though I asked about them and had to listen to (boring) child stories.

I don’t care how often your child poos.

This is what I mean about boring stories. I don’t care how often your child poos. Unless there’s a story linked to it, I really don’t care, and even then why are we talking about poo? Do you want to hear about my poos? Maybe that’s where I’m going wrong when I say people don’t take an interest in me, maybe I should get involved with how many times I’ve been to the toilet that day.

I’m writing this post mostly tongue-in-cheek if you hadn’t guessed, but the points I make are ones that I do find frustrating sometimes. I have lots of friends who manage to get the balance between parenthood and normal life conversations brilliantly and I love spending time with them and their kids. But considering so many mums and dads post on Facebook about missing adult conversation and ‘me time’, you’d think that they’d skip the poo conversations whenever we meet up!

Stress Dosing for Emotional Stress

When you’re sick or injured and have Adrenal Insufficiency, you have to double your steroid dose to cover the additional stress your body is under. This is because our bodies don’t make any or enough of the stress hormone cortisol. It’s sometimes confusing and hard to get right, but the general rule is if in doubt, stress dose: too little could kill you, too much in the short term won’t. 

Emotional stress is a whole other ball game. It can be more dangerous than physical injury or illness because it sneaks up on you, and then you have to try to work out how much extra coverage you’ll need e.g. A full double dose or a slight bump. Mentally you might be ok with whatever is going on but your body might not be- it reacts to your subconscious thoughts as well as your conscious ones. 

For some things it’s obvious. Bereavement or shock is a no-brainer- double the dose or inject if needed. But life is full of complexities and twists and turns and, like everyone, you can handle some things better than others on one day but be a mess the next, even if it’s the same thing. 

There are also a few things to think about regarding emotional stress which non-AI people take for granted (I did too before diagnosis):

1) The proximity to your last steroid dose. A friend was in a car accident and he waited until 30 minutes after my lunchtime dose to tell me. I was obviously still worried, but I was in a good place to mange my feelings about it. People with AI are best equipped to deal with bad news or emotional stress 30 minutes after their meds. 

2) The way in which you are told stressful news. If someone has bad news for me and it’s kind of dropped on me like a bomb shell e.g. via text or said in a really panicky way, my body explodes hormone wise and can’t cope. Even if practically and logically I can process it, my adrenal glands have other ideas. On the surface, I look the same but there’s a tsunami going on underneath causing massive problems. If a non-AI person is struggling to control their feelings or stress to news or an event, it will be potentially harmful for an AI person. The human body reacts to cues from other people as well as what they say- if you’re notably anxious when telling me something, my body will pick up on that. 

3) The situation or context you find yourself in, which is emotionally stressful. Arguments and conflicts wipe people with AI out for a lot longer than other people. We can’t just rant or get angry about it, get it off our chest and move on, even if mentally we want to. It takes a long time for our body to right itself after an argument. If someone with AI tries to walk away from an argument or situation, it’s probably because it’s necessary to keep them safe not because they don’t care about the other person. I hate ringing call centres to complain because my body doesn’t cope well with it. I am, however, very good at complaint emails because I can walk away and go back to it later if I feel things getting too much. 

4) Other factors. Other things might have happened that day, it could be hot, over exertion, feeling under the weather… because AI is so dependent on how the body is doing at any given time, sometimes you can do everything right emotionally and still end up needing to updose.

There are ways to protect yourself though. E.g. I try not to get sucked into other people’s unnecessary dramas and have started to avoid people who push negativity which can impact on me. I do a lot of meditation so I can observe my thoughts and feelings better, but not get washed away in them. My grandma is in the latter stages of dementia so my mum has agreed with my husband that she texts him first before contacting me with any updates- if I’m not able to deal with it at that point he can tell me the news when I am. I avoid situations I know wind me up or ask my husband to take care of things.

It is important to recognise that it’s not just my mental health which can’t always cope with stress, it’s physiological (not psychological). I still want to know things and don’t expect to be wrapped in cotton wool. Like most things, if in doubt, ask. Ask how I’m feeling, or when my last dose was or if I’ve had a bad day. Think of it in a similar way to how you would tell a child bad news (albeit not as patronising! 🙂 )- you’d gauge their ability to cope, prepare them for hearing something upsetting and listen to their questions or concerns afterwards. That method actually works well with me too! 😉 I also don’t mind if everything goes wrong and I still need to stress dose- it’s a learning curve: if I can’t get it right and actually have the illness, it would be massively unfair for me to expect other people to get it spot on!

I realise that it might not be clear what constitutes as a ‘stressful’ situation if you don’t have AI, so I’ll write another post soon about that. 

Sometimes emotional stress is unavoidable though because you can’t micro manage everything, which makes the illness an interesting one to manage! You kind of learn with experience what things feel like and how much to take, but it’s still easy to get wrong. For minor things, I take a small 2.5mg bump, 5mg if I feel particularly shakey or consciously upset. If I get any low cortisol symptoms soon after, I’d consider 5mg extra or doubling my next dose. A lot of it is trial and error. The best part is, if something is particularly stressful, I ‘forget’ that I’m supposed to take extra hydrocortisone and my husband and my friends have to work hard to convince me that that’s what I should be doing! There’s no one size fits all either- some people stress dose for things that I wouldn’t and vice versa. It’s all part of the great guessing game which is having Adrenal insuffiency 😉 

NHS and Private Healthcare

This is something that comes up a lot at the moment, mostly because of the looming General Election. I don’t really want to get into politics but what I do want to say is that I’ve experienced both the NHS as a free service and a privatised system while living in France. Both have their strong points and weak points as any system does, but the NHS is in this weird half privatised half not state of flux, and that’s what I think is causing the most problems- it’s neither here nor there at the moment. Personally, I think the NHS is great because it provides me with completely free healthcare. If I were to have to pay for it, the drug that keeps me alive costs £90 a packet, and I need a minimum of 4 packets a month (£360 a month). Just to keep alive. Never mind the other 15 items I have on prescription.

To be perfectly honest, the majority of people won’t notice a difference because they’re not a frequent service user. Privatisation of NHS services has proved to be beneficial for me at some points. For example, I had a severe asthma attack once and a private ambulance was dispatched to me within minutes because an NHS one wasn’t available. Or I’ve had scans which have been read in the middle of the night, possibly by someone else who is contracted out. When the NHS couldn’t meet a physio target wait time, I was referred to a private one for a short period. I didn’t have to pay anything for all of those things, so sometimes it works out in favour of the patient. But it still costs the system money.

However, despite the positives to come from it, I’ve had my fair share of problems. Lots of GP practices are now managed by private companies. The staff who work there are bound by that company’s rules and procedures and have to really fight for their patients a lot more than they should have to. I’d like to make the point that this is not a dig at any NHS staff, it’s more to do with the fact that the system isn’t backing them up effectively. This post is based on issues and frustrations they’ve explained to me while trying to help resolve my problems. The problems I mention, and other ones I haven’t, likely happen in different surgeries all over the country, this is just my experience.

1. Appointment times become a random number and every minute counts. Like 16.12pm. Doctors aren’t allowed to round up to quarter past, three minutes is money lost.

2. Staffing changes happen so that there are fewer GPs and ANPs and more appointments available with HCAs and nurses. Which is fine if your problem can be helped by a HCA or practice nurse, but sometimes it can’t, and you need to see the doctor. GPs sometimes have to work across multiple sites, which means it can take longer to see your GP of choice.

3. The computer dictates a lot of your healthcare.  Because GP time is now like gold dust, you can’t just ring the surgery and have a quick query answered or sort stuff out without making an appointment. So non clinical staff are left in a horrible position of feeling like they should be making clinical decisions (which they shouldn’t). So ‘the computer says no’ is a phrase which comes up a lot. For example, that drug that keeps me alive? If the computer says I can’t have my repeat, I can’t have it and they can’t override it. But it’s 2 weeks for a routine doctor’s appointment (not with my doctor) to sort the problem, by which point I’d have been dead for 1 week and 6 days.

4. Computer systems don’t match. Hospitals have their own systems which GP surgeries can usually log into. But when private companies take over, they don’t always buy into the systems that ‘talk’ to each other because they cost a lot. So the hospital can put notes on which the GP can’t see, (but the hospital thinks they can) and it can take up to 12 weeks for the patient letter to get posted out, delaying treatment or causing everyone a headache trying to get hold of the information.

5. Everything comes down to money. I’ve been told a couple of times how much some things cost, I imagine because someone somewhere is trying to save money. It’s not the person telling me’s fault, it’s the system that makes them feel like they have to choose between finances and patient care.

6. Referrals and tests aren’t a given. You might not get sent for that scan or test you need if it costs too much money and the GP can’t completely justify it. Which is fine in a lot of cases because they can justify it. But just some food for thought: when I was diagnosed with Adrenal Insufficiency, the doctor ordered the test as a final stab in the dark with little evidence to suggest it was needed- I was in hospital with a respiratory problem and got diagnosed with an endocrine one. If he’d discharged me that day like he had originally planned, I’d have died very quickly soon after. Sometimes doctors need to work creatively and can’t back up their thoughts with clear reasons- that’s why investigations happen in the first place to help them theorise. Preventing doctors from doing that is only going to make patients suffer.

I’d obviously rather see the NHS continue to be free. It can be slow and clunky, but then it’s really outdated and people don’t use it properly but, if you do need urgent treatment, it’s pretty efficient. A lot of people won’t have noticed any difference if their healthcare has been privatised, except maybe on paper. But for people with chronic health problems, privatisation like in America and not being able to get insurance could be a huge problem. My prescriptions alone at cost/retail price would be roughly £1000 a month, never mind anything else care-wise I access every month*. But what’s a healthcare system if it doesn’t treat those who need it the most properly i.e. the chronically sick? Vote for who you think is right for you in the election, but don’t be fooled into thinking that the NHS continuing to be free is a guarantee.

*if you thought ‘well if she didn’t use the NHS it would save it thousands a month’, please don’t bother to comment so. You’re effectively saying that you’d rather see another human die so that your health taxes aren’t ‘wasted’ on a sick person. No one actually expects their health to fail, so hopefully you’ll never have to experience that feeling, but if it does, we live in a society which allows us the opportunity to access help when we need it and contribute towards others’. If you don’t like that ethos and want to pay as you go and ‘save your tax money’, then maybe you would actually be better suited to a completely privatised system where you have to pay for every paper clip that gets used as part of your healthcare 😉

What a Difference 5mg Makes…

…Or any updose for that matter. Updosing is where you take slightly more Hydrocortisone than your usual baseline dose to cover an extra stress or exertion. So my current baseline is: 15mg at 8.30am, 7.5mg at 12.30 and 5mg at 17.30. If I wanted to updose, I’d take 2.5mg or 5mg extra either at one of those times or in between if something specific happened. 

I’ve been updosing to pretty much a stress (double) dose for the past 3 days because it’s been my birthday. It’s frowned upon to do this, because it’s supposed to be for illness or other stress (ie not fun things), but I wanted to actually vaguely feel like a normal human being and enjoy it. It’s worth noting that even with the increase I’ve still had naps scheduled every day, had a lot of Payback to deal with and didn’t anywhere near do things which other people would count as ‘normal’ birthday activities, but I would have ended up in hospital without updosing. And I had a lot nicer a time because of it. 

Which is why it’s so bloody frustrating. I drag myself through life at the moment. There is not a point in the day where I don’t feel foggy, tired, dizzy, in pain or sick. On a slightly higher dose, I feel like I can keep up with conversations, my sense of humour feels lighter and I laugh more, I don’t feel as anxious about keeping track of where the nearest bench or toilet is, everything feels less like I’m moving through tar… It’s been amazing to feel even vaguely like my old self again. And I know that I can feel like that by increasing the pills I take, but I can’t. People on diets say they feel tempted to break them and how hard it is when they have treats in the house, imagine how tempted I feel to take extra HC and not have to struggle so much! 

But I’m not allowed to do that, and I wouldn’t anyway. It’s bad for my bones and heart and liver and blood sugar etc. It’s not an exact science and too much can cause problems just like too little can. Steroids are wonder drugs but they’re also not good for your body long term. So yes I have to take them to stay alive, but I need to keep the dose as low as possible. Which makes life miserable somewhat.

 It’s like being told to survive on one bowl of porridge a day and that’s it. Yeah you can do it, but you’d be tired, grumpy, have stomach ache, have lots of other side effects from not having a balanced diet and having things missing from it, you’d never feel full, not to mention feeling low from having the same routine and expectations of food every day and you see everyone else eating cooked breakfasts and feel frustrated. It’s so frustrating because, in my irrational moments, I know I can live better with more hydrocortisone. Except in my rational times, I know that it’s not an easy fix to pile on the doses just like that and there’s the bigger picture (i.e. The rest of my life) to think about. If my dose needs to be increased, it needs to supervised, monitored and justified, not just because I feel like it. 

I really enjoyed the few days I was updosing for my birthday, but it does feel a bit like Cinderella being allowed to go to the ball and then getting locked back into her house with chores and tasks to complete. I’m expecting a bit of a crash in the next few days-  a natural one because the birthday fun has come to an end, like most people would experience. But also an adrenal one, partially fuelled by an emotional response to my Cinderella simile but also a physical one because I’ve done a lot the past few days and I have to taper back down my hydrocortisone to my baseline. It’s not pleasant and I really loathe it. Maybe somebody rich will knock on my door with a shoe and offer me lots of money/a kingdom to rule and it’ll all work out in the end! 😉 

A ‘Suprise’ Party

My husband organised an early suprise party for my 30th birthday which was lovely. He invited lots of people, including friends I haven’t seen for a while, which was particularly exciting, although I just found the day exciting in general especially whenever anyone arrived! 

I used be an emotive person, in the sense that if I got excited or angry, I put all my energy into it. But since being diagnosed with Adrenal Insufficiency, I’ve had to learn to keep everything on a more even keel. Emotions, even happy ones, trigger a response in cortisol, which I don’t make, and therefore I come crashing down fast. 

Which makes the concept of a surprise party a tricky one for people with AI! For many reasons:

  • Everyone jumping out at me and shouting ‘suprise’ has the potential to make me very ill very quickly. Even if I appreciated the surprise (I used to love surprises) I wouldn’t cope with it! 
  • Excitement about seeing people (and I was hugely excited) without taking extra cortisol on board could make me ill.
  • It’s hard to pace your day if you don’t know you’re having to do a lot later on.
  • Just socialising and interacting with people is more than I’d do on an average day, so updosing was definitely necessary.
  • My husband had to buy food and tidy the house. To start with, he was going to get a friend to take me out while he did this but then he and my friend realised that I’d use all my energy and wouldn’t have any later so changed his mind. 

So I did have a surprise party, but my husband and friends had to be a bit more sneaky about it:

  • I went out with a friend the day before for his birthday and he told me to updose for some of the stuff we did, and then take a bump dose in the morning the next day too because of being ‘out the day before’. (A ploy!) You can’t updose every day though, but this was a special occasion which makes it justified.
  • My husband persuaded me a morning nap would be a good idea before everyone came over
  • Then he told me about the fact that we were having some people over when he produced the food he’d bought while I was asleep- there was a lot of it. He didn’t tell me who the people were though, so that was still a surprise. This was good because it meant I could double my hydrocortisone for the day so I could manage. So the surprise came with a warning!
  • Helpfully, everyone arrived and left at staggered times which helped with pacing.

I had a lovely afternoon. I did leave some people still chatting in my living room to go to bed and then slept pretty much all of the daytime the day after to recover but it was worth it 🙂 Thank you to everyone who had a hand in organising it or being a part of the day. 

Pain

Most people with Adrenal Insuffiency also experience some kind of pain as one of their symptoms. Flank pain, headaches and abdominal pain are all low cortisol symptoms which can lead to adrenal crisis if left untreated. However, it’s not the most obvious of symptoms to non-AI patients, so I thought I’d write a post explaining what pain I have on a regular basis. The problem with pain is that it lowers cortisol fast, which consequently makes the pain worse, which creates a cycle. Things like activity, the weather, and low cortisol all bring on the pain for me.  It’s worth pointing out that this is specific to me, so not all people with AI will have these aches and pains, and there will be others that other AI people do have that I don’t.
Stomach/abdominal pain 

It feels like contractions is the easiest way to describe it. Lots of people have this. It’s a constant, dull stomach ache which gradually gets worse and peaks before reducing and then repeating the pattern. It happens when I’m really low on cortisol or I’ve overdone it. One of the endocrine groups on Facebook did an informal poll and 15 women who have AI who also have had children said that this pain is worse than the pain they experienced while in labor with actual contractions. It’s so bad I want to and almost black out. Unfortunately I get it a lot. 

Headache/migraine 

I don’t know how you class a headache or a migraine but I get headaches where it feels like my skull, jaw, neck, eyes and ear are on fire and there’s too much pressure everywhere. It’s a new symptom for me so I haven’t worked it out fully yet, but lying completely still in the dark makes it partially bearable.

Cramps and spasms

If I try to do something like lift my arms over my head, they cramp up a lot of the time. Likewise my legs do if I try to do too many steps. My back and ribs lock up and spasm randomly so that it feels like someone is hitting me in the ribs or back. 

Skin 

My skin feels too tight and makes me feel like I want to pull it off. It also gets really itchy. I take antihistamines 5 times a day which helps, but sometimes the burning and itching happens anyway.

Random rib pain 

I call it random because no one knows why I have this but my chiropractor can feel it and alleviate it for a short period. She’s actually amazing because without her my general pain would be unbearable. I see her twice a week, but not on the NHS. It’s basically a pain across my diaphragm, in my ribs and around my back which kind of feels like a rubbing pain or an elastic band but mostly is this big pressure which means I can’t breathe properly. It literally gets stuck so my rib cage doesn’t move properly when I breathe. Part of the problem with this pain is that, unlike a broken limb, you can’t immobilise it to let it heal. Breathing is what makes the pain worse, but the pain makes breathing harder. So I’m stuck with it. It also gets a lot worse right before I end up in hospital. I take 4 different types of pain killers (8 different dose times) a day and put lidocaine patches on at night to try to make it manageable as well as seeing a chiropractor.

Joint pain 

My joints swell up whenever they feel like which makes them sore, particularly my ankles, knees and wrists. It makes it difficult to walk and stand when it’s really bad. 

Bone pain 

It sounds weird but it’s the best way to describe it. When I feel really ill, usually before I go to hospital, it feels like my bones are on fire. I’ve got osteopenia, which is pre-osteoporosis so that might cause it, but I don’t know. 

Sensory linked pain 

I really struggle with a lot of background noise/loud noise and lights or varying light versus shadow. It physically makes me ache, but I can’t really explain where, it’s kind of like a general flu like ache. It’s to do with processing light and sound around me, so if someone is tapping on a table while talking to me, I find it hard to listen to what they’re saying because I find it hard to filter out the noise (for example). Or sometimes I close my eyes and listen to what’s going on because then I don’t have to filter out movements and light around me and can focus just on what’s being said. Too much light and sound make my eyes and ears hurt too.

Like I said, it’s not an exhaustive list and it’s specific to me. I don’t ever feel ‘pain free’, I always have a constant level of pain, despite pain killers, physio and chiropractor. Something which helps a lot though is trying not to think about it too much. Sounds easier said than done, but the pain gets so much worse if you’re constantly dwelling on it. If you’ve got a bad back and you spend all your time going round and round in your head about how much it hurts and saying how it’s ruined your life, you’re going to suffer a lot. If you acknowledge you have pain but don’t put yourself under so much mental stress, you will suffer less. The level of pain will be the same, but the amount of energy and mental suffering you place on it will be less. 

Another thing which helps me is mindfulness meditation and body scans because it allows me to notice which bits I’m holding funnily or tightly because of my pain and relax those, which helps with my overall pain. It doesn’t make it go away, but it helps relax other areas of my body which contribute to it. 
The mistake a lot of people without chronic illnesses make is the fact that if they can’t see a person ‘in pain’ or the person isn’t talking about it, then they assume the person isn’t in pain. You kind of get used to what you’re dealing with. So the only time I really say anything about my pains or phrases like ‘I can’t do that, can you…’ is when it’s really, really bad. The rest of the time, I do things like holding my breath when my back spasms or sitting with my arm resting on the top of my head when my ribs are hurting me. You work out what alleviates your pain and manage it the best you can. People who wear glasses don’t talk about poor eye-sight all the time, but might still have issues seeing even when they’re wearing their glasses. 

The human body is clever, it adapts. It’s actually quite good at surviving a lot of physical pain. But whether that’s a positive or negative when it comes to chronic pain remains to be seen 😉 

Limits and Payback 

Well, if she can stand in front of a TV camera and argue with a politician about disability benefits, then she can get a job.’

I overheard someone saying this about a woman who was campaigning about changes made to disability benefits and how they penalise people in genuine need. Wow. It annoyed me for two reasons:

1) Does that person think that all disabled people are bedridden, unable to articulate themselves clearly or have a physical disability, such as being in a wheelchair?

2) How can that person possibly know what the woman is and isn’t capable of just by looking at her? No wonder disabled people face so much prejudice and discrimination if people make snap judgements for daring to fight for better treatment from our government in public. 

But it is all too common an assumption: if they can do X, then they can work. There is this myth that half the country are wrongly claiming benefits for disabilities which they have fabricated and tax payers need to question everyone who ‘looks’ like they could be at work. Actually, the percentage committing fraud is tiny and insignificant in comparison to the number of genuine claimants, and you’re always going to get people who play the system so it would happen anyway, benefit reforms or not. But that doesn’t make a good news story or win election campaigns.

Anyway, politics aside, despite what people might think, just because someone can do X, doesn’t mean they’re fit for work. I’m going to talk about two things that people with disabilities have to take into consideration in their daily living; limits and payback. 

Limits

The phrase ‘know your limits’ is often applied to alcohol consumption and is different for everyone. One person might be able to drink 6 pints, another only 1 before they reach their limit. In fact, the person who can drink 6 pints one day might only manage 3 in another day if they’ve not had enough sleep, not drunk enough water or not eaten. There’s a rough idea, but it sometimes changes. The same applies to disability- there’s a rough baseline but it moves, often depending on things like quality of sleep, hydration, ability to take nutrition… etc. 

The thing about having a job is you have to:

  1. Turn up at the same time every day and work a prescribed number of hours. 
  2. Be at work every day.
  3. Be able to travel to and from your job safely. 
  4. Do activities required by the job role, not what you feel you can manage.
  5. Conform to work place protocols (or your reasonable adjustments made by your employer).

Someone who is disabled might be able to do all of those things on one day. That would be like being able to manage 8 pints one night rather than the average 6. But then the next day would be like trying to drink the 6 pints again. Realistically, you’re going to feel terrible. You might be able to do it, but most likely you’d only cope with 4 or 5. Then the next night you’re expected to do it again and you manage a pitiful 2. Then your body gives up completely and you spend the next 3 days vomiting. Suddenly you’re not able to manage to get to work on time and do your job, let alone anything else on either side of it like making dinner. It’s not sustainable living like that. 

There’s a difference between being able to plan tasks around what you can manage within your limits versus having to do set tasks within a specific time frame while working. There are two things to consider here as well: 

  1. It takes a long time to work out your baselines and limits in terms of what you can manage, and it also can vary daily. Some  illnesses change so much every day it’s impossible to work them out. 
  2. A lot of disabled people don’t like admitting what they can and can’t do to the full extent, meaning they might push through something at work which then could have serious consequences to their health. Just because they’re doing it, doesn’t mean it’s safe for them to do it.

So yes, that woman was stood in front of the camera. But that was possibly her 6 pint day, and she’d only manage 1 pint days the rest of that week. Or she would be working with payback. 

Payback

As everyone does, disabled people look at aspects of their lives and think ‘I really want to do that, I’m going to find a way of doing it which is within my maximum limits but will result in some payback’. Some people might be thinking ‘well no, why should you be able to do it, you’ve got a disability and you know it’s a bad idea, don’t be stupid.’ The answer is because if we don’t, we don’t really live. And that’s a miserable existence, more miserable since having a disability already makes things tough. 

Think about it. The 6 pint person will drink more than that when they go on holiday or on a special night out. They know they’ll get the most incredible hangover the next day as payback but they do it anyway. How is that any different from a disabled person expecting payback for having done something? It’s not, but for some reason people assume that disabled people have to live their lives as hermits and not do anything that they might – dare I say it – enjoy. Payback is like a hangover but it can last varying amounts of time and present in different ways depending on the disability or illness. And unlike someone who’s had fun partying, disabled people experience payback for things they don’t like doing/want to do too which have to be taken into account e.g. Grocery shopping.

The woman on the news might have spent the next week lying in bed to recover, or in excrutiating pain, or even in hospital. But is it worth payback, standing up for disabled rights because benefits assessments are currently being done by untrained professionals who say you’re fit for work because you can sit and have a conversation for 30 minutes, ignoring the professional opinion of doctors who treat you? 

Yes. I think payback is completely justified then. But it would and should be anyway. Disabled people have a right to live without being made out to feel like a fraud or like they’ve done something wrong, just as much as someone who wants to drink 8 beers one night shouldn’t be automatically named an alcoholic or a hooligan. There are always people who take limits and payback too far and overburden the system, either because they falsely claim benefits they don’t need or because they need an ambulance because they’ve drunk 15 pints and poisoned themselves. But there are also decent, rule abiding people who just want to get as much out of life as they can, who don’t deserve to be tarred with the same brush and get the help they need and are entitled to. 


Planning a Weekend Away

A couple of weeks ago, I went to see my niece who was born premature. It was a bit touch and go for a while and she was in hospital 2 hours away. Most people on finding out this information, would have jumped in the car at the next available time possible, even if it meant driving there and back in one day. I physically can’t do that – doing that would have meant I’d have ended up in hospital too. So we planned to go see her a month after she was born. Which I was obviously massively frustrated about. Having a chronic illness and travelling takes considerable planning as it is, but having an illness like mine which isn’t very stable at the moment is more complicated and there are certain things I have to do or check out first when planning a trip. At the moment, I mostly stay put at home because I’m not well enough to be able to make trips. However, my niece was more sick than I was and in the NICU, so this was an exception! Here’s how I plan for a trip:

  • Find out where the nearest hospital is, and then where the nearest trauma centre is. If there’s not one within 20 minutes ish of where I’m going, I don’t go. Most people go on trip advisor and check out local attractions and restaurants before deciding where to stay. I go on the NHS website and make sure the nearest hospital has an endocrine department! 
  • Packing medications/’equipment’. I tend to take 1.5 times the amount of medications I’ll need away with me, just in case. If I go away for more than a couple of nights, I also take things like my BP machine, thermometer, blood glucose machine and sharps box so that if I feel weird I can do checks myself and adjust meds like I would at home rather than having to guess or go straight to hospital. Basically if you’re ever ill when you’re away with me I can probably give you a similar service to an out of hours GP (disclaimer: Joking). This is what I took with me meds wise when I went away for 2 weeks. That was a while ago, I take more daily meds now! 

  • Documents. I have a letter explaining why I need needles and saline for security points, and also saying that people can’t confiscate or withhold my medication. But I also carry factsheets (translated into other languages if need be) about my condition and what drugs/tests/treatment need to be done in hospital. Some of my drugs are controlled so I take prescriptions as evidence they’re mine when I go abroad. I don’t have magazines in my hand luggage, I have lots of (prescription) drugs! 
  • Travel. Car is the best option because we can pull over and have rests whenever we want. I get a lot of pain from travelling and it tires me out even though I’m not driving, so we don’t tend to go far. I find places like airports and train stations hard because of the amount of walking/standing involved. Flying isn’t an option right now since it makes me very ill currently. Especially if there are delays- the last time that happened I had to ask the cabin crew to sort the temperature fast to avoid them delaying the flight further by sending me to the ER. 
  • Accessibility. I use this word to encompass everything I check out, not just ‘is there a lift because I have issues with stairs’. So things like is there parking nearby? Do the places we’re going to have toilets? Air con or do I need layers? Places to get water? Places/benches to sit down? Is there a lot of walking involved or do I need my wheelchair? Is there somewhere in the day I can have a nap? Are there places to eat which fit in with my normal diet? 
  • Accommodation. I can’t stay by myself overnight, so I had to visit my niece when my husband or my mum was available to be in the same hotel overnight, just in case. But on other occasions, like visiting friends or family, I suss out things like is there a bed/sofa bed (I can’t sleep on the floor) or make sure that the room I’m sleeping in isn’t too hot, dusty or damp. It’s not because I’m fussy, it’s because those things make me sick!
  • Meal times. I have ‘windows’ of time where I need to eat in to help manage my conditions. So brunches, late lunches/dinners can cause me problems. I also need to know what foods roughly I’ll be eating in advance so I can balance out my carbs for the day. I carry a lot of snacks with me, so, again, I’ve got you covered if you suddenly get hangry. 😉
  • Nap times. I nap most days as it is, but I definitely can’t go away and do more than usual without scheduling in some lying down quietly/nap time every day. It sounds boring, but it’s that or I go to hospital. Helpfully, I seem to have a similar nap schedule to lots of my friends’ babies! 
  • Emergency injection buddies. I usually go away with my husband but if I do go away or out for the day without him, there’s always one person who I’ve trained in how to use my injection and what to say to paramedics dispatch if need be. 
  • Activities before/after. If I’m going away, I won’t do much/anything the week before or the week after. Except for medical appointments. Basically I’ll spend most of the time in my pjs lying down and doing the absolute minimum. Sounds like most people’s idea of heaven, but I’d much rather be a functioning human being and have a social life that doesn’t just involve Netflix and Facebook! 😉