‘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! 

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 😉

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. 

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! 😉 

    ‘Weren’t You Scared?’

    Since writing my post about needing to use my emergency injection, a few people have messaged me (thanks!) either to keep me entertained or because they’ve been curious about adrenal insufficiency. Something which has come up a lot is the question ‘weren’t you scared?’. I think I’m getting asked this more than usual after a hospital admission because I actually had to use my injection this time.

    First of all, feeling like I’m going to pass out and being ill in random places, ambulances, a&e, hospitals etc etc isn’t new. That doesn’t mean I’m cool as a cucumber, but it does mean that while I’m right in the middle of it, I don’t really get properly scared. It’s kind of a ‘here we go again’ eye roll moment. I do cry and go off on a tangent/spiral, but it’s not fear, it’s crazy hormones making me anxious and confused. Don’t get me wrong, Adrenal Crises are scary things. You don’t feel like you’re in control of your body (you’re not), it’s almost like watching a film, but I have low cortisol symptoms all day every day at various points anyway. The indicator it’s a crisis for me is i get all of them at once and a ‘I need hospital’ feeling.

    Secondly, it’s actually really bad if I do get scared because it means I’m more likely to die because my body wouldn’t cope with it (not having the stress hormone and all that). So it isn’t in my best interests to be scared!

    The main reason I don’t get as scared as people would expect is because I spent a large portion of time walking a fine line between conscious and coma before diagnosis. I just didn’t know it, and neither did the doctors. So my theory is that if I didn’t die then when no one knew what was wrong with me, I’m unlikely to now I know what’s going on *touch wood*.


    The other side of it is that I’ve had to become very practical about it. If I sit down and think about it, it’s a bloody scary illness. Lots of things can kill me. If I have a minor car accident, I could be critically ill fast. A stomach bug is potentially life threatening. I rang an ambulance once because I opened the oven door and the temperature and bending down sent me into a hypoadrenal episode (suffice to say I don’t use the oven anymore). But equally anyone could also cross the road and get run over and die. Yes death is a lot more likely in my case, but if I worried about everything that killed me, I’d never get out of bed.

    I do get scared sometimes but I have to be conscious unless I’m with my nurse friend(s) in case I need to give very specific instructions about my care- the joys of having a rare illness. So I kind of close my mind off and deal with it later. There have been 2 clear times I’ve been terrified, both times I ended up in resus and I had a lot of people running around after me very quickly. One of those times I’d rung the ambulance by myself so had to deal with it all alone. The problem with going to hospital a lot is you get clued up to routines and jargon. So resus symbolises a ‘crap things are bad’ moment for me and I understand all the things they’re saying and know exactly what bad obs and the various alarms mean.

    So why wasn’t I scared when my nurse friend got my injection out? Well I was a bit, because if he felt the need to use it he must have been worried. But I also knew that if I did pass out, I had him, my husband and my friend there so someone would be able to sort me out. I rarely have that luxury!

    My main fear about adrenal insufficiency tends to come out in the fact that I don’t like being/can’t be left alone for long periods, especially at night. I’m not safe to make meals and do a lot for myself for one thing, but if I’m going to have a problem, it will likely be at night since that’s when I feel worse. So it reassures me having someone with me who can at least point out that something is wrong and prompt me to take medication or call an ambulance. Because anxiety makes me more ill, just the fact that someone is nearby helps a lot with that- that’s why I joke about having a babysitter. My second fear is not being taken seriously by a medical team. It’s less of a problem now because I’ve got alerts set up on the systems by my doctors/the ambulance service, but there’s nothing more scary than having a life threatening, time sensitive illness and having someone who hasn’t heard of it refusing to treat you (it happened a lot to start with and was pretty damaging!). I got used to having to put across a reasonable, controlled and rational argument to doctors when seeking emergency help, because if I didn’t, they would listen to me even less. It’s kind of stuck.

    So yes. If I sit down and think about it, I do get scared because it’s a scary illness and a lot rides on me being with it to explain it or to be able to do my injection. But I plan my life sufficiently that I cover the obvious problems, and the alerts are set up, I wear medical ID, carry instructions and have emergency contacts on my lock screen of my phone for the hidden gems life throws at me that I can’t plan for. I wouldn’t be human if I said I wasn’t a bit scared using my injection, but that specific emergency was the least scary one for me I’ve had so far, largely because I knew my friend was looking after me! 🙂

    Nurses’ Day

    Anyone who’s been an inpatient in hospital will tell you that it’s the nurses who make your time there more bearable. Aside from being the ones who physically give you the drugs, the good nurses are ones who help you out of many undignified situations (and join in with the laughing or crying depending on your mood); they advocate for you when your doctor isn’t quite ‘getting it’ (and then explain off the record afterwards why they’re such a grump/stresshead); and just generally have a sixth sense about what you need when you need it. If you get on the wrong side of your nurses then you’re in trouble (and you’re an idiot).

    I could talk about how they’re overworked and underpaid, but I doubt anyone goes into nursing thinking anything different (even if it’s wrong)- I know I knew to expect the same when I started teaching. They join the profession because they’re passionate about caring, which is pretty awesome. Doctors focus on lab work and tests and scans and then think about the human attached to them. Nurses are all about the humans and their needs, and use the information given to them to help deliver care. If you’re dying, it’s not a doctor standing with you while you take your last breaths- their bit is ‘done’- you can’t be fixed. It’s a nurse there. (Side note: Doctors can be great too, but this isn’t a post about doctors!) It’s physically demanding being a nurse, but it’s also emotionally hard too. How can you not care about losing a patient or seeing a patient upset? 

    I go to hospital enough and go to the same wards meaning I now recognise the nursing staff. I get really anxious before the change of shift because I’ve had some negative experiences in hospital in the past, but if I see a nurse I recognise I immediately feel so much better. I know they’ll look after me- they’ll fight with the docs if need be, or ring the one on call if I need something at night or try and work out some better pain relief. It makes such a difference, and I feel more relief seeing nurses I know than seeing doctors I know. That’s how much of an impact they have on my hospital stays. 

    I’ve got a few friends who are nurses in various fields who do great jobs. But I’ve got one nurse friend who has literally kept me alive for the last few years. Adrenal insufficiency is a stupid, volatile, unpredictable illness which is incredibly difficult to manage. There was a point where I was pleading with doctors to take me seriously when I was telling them I felt like I was dying and were it not for this friend saying ‘I believe there’s something seriously wrong’ I would have just keeled over and died at some point. Aside from support, he’s also helped me out massively managing my condition when it’s gone downhill fast, including injecting me last week with my emergency injection, plus he takes so much pressure off me by doing the mathematical nightmare that is my taper plan or helping me interpret what doctors mean, or translating my gut feelings/quirks into words that actually make sense to the doctors. He always comes to visit me when I get admitted, often after working a 12 hour shift and regularly ‘babysits’ me if I’m ill but not ill enough for hospital/I’m being stubborn (I offer him Netflix in return, I hasten to add). I could say more, but if I’m too nice he might think I’m seriously ill 😉 plus I’m liable to forget half of it. The gist of it is, I’m probably unaware of half the things he does for me and I wanted to say thank you. 

    My other nurse friends have also offered me advice/moral support/a listening ear when I’ve needed it, so thank you too. Another friend has constantly been at the other end of messenger whenever I’ve needed to rant about what’s been going on, which helps so much. 🙂 The other wonderful thing about nurse friends is you can pretty much guarantee that one of them is on a night shift at any given time to send a ‘I’m bored and I can’t sleep’ middle of the night text to! 😉 

    So happy nurses’ day, nurse friends/nurses who look after me and other patients. Thank you for what you do to make our lives more bearable when we’re feeling at our worst. 

    Photo: RCN

    Accessing Mental Health Care 

    It’s Mental Health Awareness Week so I thought I’d share some of my experiences in accessing mental health care. I have depression, partly because my situation is depressing in general, partly because I’m taking steroids which also cause depression/low mood and partly because I don’t make a lot of the hormones/chemicals I’m supposed to, so I can’t actually control some of my anxiety and depression with therapy alone and need medication. 

    I have to say, accessing mental health care can be just as frustrating and complex as getting appropriate care for a physical illness. And that says a lot, since I have many problems getting appropriate care for my physiological illnesses. However, I always have the ‘this is life threatening if left untreated’ card with my physical illness. It’s not quite so straight forward with mental illness. 

    Waiting lists are long.

    It’s the same for most services in the NHS, but, unlike physical illness, mental illness changes. It presents differently- you get used to it and it manifests differently and messes literally with your head. If a physical illness changes while waiting for specialist input, you can go back to your GP and put something temporary in place. That doesn’t always exist for mental health problems. And while being in pain or feeling ill for a long time on a waiting list is terrible, dealing with a mental illness feels a whole lot more isolating and wears you down so much, it literally messes with your head. Which makes everything feel so much worse even if it’s not. 

    You don’t necessarily have appointments when you actually need them. 

    Part of my endocrine condition means I get myself into full meltdown mode and I can’t stop it. Biologically, I can’t control it and the resulting panic attack or outburst can actually kill me because of the nature of my adrenal insufficiency. I can, however, probably do something psychologically about it before it gets to meltdown stage, but none of my doctors have seen me at that stage to be able to help. And I always seem ‘fine’ at appointments or I don’t feel like talking about stuff then. So, like other people, I don’t get the help when I’m actually having extreme issues, because it’s impossible to coordinate it, even if I can get some input into every day problems. 

    Difficulties describing symptoms.

    I’m pretty sure lots of people feel like this, but when I’m having a bad mental health day, I don’t really remember what goes on. Which makes it hard to explain what the problems are. If something hurts, you can point to it at the very least, but you can’t do that with emotions. So sometimes I say ‘I’m fine’ and I’m not lying, I’ve just forgotten that I wasn’t. The trouble is, some mental health professionals sometimes either assume you’re lying by covering something up when you’re not, or they assume you’re over exaggerating when you’re not. You have to find a practitioner who’s a good fit for you. Quite a lot of the time, the people who assess you in the community aren’t always medically trained and go by a criteria which clearly isn’t going to be easily applied to every person. 

    You’re a bit stuck either way.

    If you are proactive in trying to manage your condition, you’re seen as ‘coping’ so get less support or told to go away and come back in X months. A couple of my friends have been told that ‘depressed people wouldn’t be able to do that’ when they’ve discussed their strategies. The other side of it is, if you do nothing and leave it to the professionals, you’re often told you’re not doing enough to help yourself. It’s a double edged sword.

    You’re made to feel like you’re ‘different’.

    I get a lot of appointment letters from 4 different hospitals, 3 different trusts and various other medical people. But the only ones which come with ‘PRIVATE AND CONFIDENTIAL’ all over the front are the mental health ones. So automatically I feel like having a mental health problem is something to be secretive about. Which is stupid I know, but shouldn’t all my appointments either be private and confidential or otherwise? I can’t explain it, and it possibly is me being oversensitive, but being in that part of the hospital(s) feels weird. 

    Other HCPs judge you.

    They do. They see the medications you take or see ‘depression/anxiety’ listed and sometimes don’t take your physical illness as seriously, ‘blaming’ your problems on your mental illness. The amount of times I’ve had an asthma attack but been told it’s an anxiety attack (when it’s not) is ridiculous. Or I tend to cry when I have an adrenal crisis because my hormones are not functioning properly and it’s sometimes implied by people who don’t know the condition that I need to ‘get a grip’ of my anxiety, whereas actually it’s my physical illness causing it.

    There’s a lot of admin.

    Lots of mental health services operate under self referral systems, meaning you have to sort it out yourself. Which is the last thing you want to do when you’re feeling overwhelmed, and quite often the forms sit on my desk until someone makes me do it. Particularly if it means ringing people on the phone. Then you’ve also got to remember to be the liaison between your GP/hospital which can also be hard work. 

    Limited sessions.

    Like everything on the NHS, treatment is free but there are limited resources. Some therapies come with a limited number of sessions. With a physical illness, you can say ‘this isn’t working, let’s try something else’. With a mental illness, you might spend all of those sessions getting comfortable with your therapist and only just start making headway when you’re told ‘you’ve had your sessions, you need to be re referred or moved to a different service’. Even if you end up with the same practitioner, that gap in waiting can be the difference between progress made and negative progress. And it’s another waiting list…

    Lots of people dislike visiting their doctor for physical illness, but it’s so much tougher going for an appointment for a mental health problem. You feel like you’re a failure, that you should just ‘get over it’ and, to a degree, a level of shame. Taking the step to ask for help is hard enough, let alone with extra hoops to jump through. Mental health impacts on physical health and vice versa, but there doesn’t seem to be joined up thinking between the two when accessing healthcare at the moment.

    Disability Through the Eyes of a 2 Year Old

    I went to see my newly born niece for the first time and 2 year old nephew (and my brother and sister-in-law too) over the weekend, but I’d just been in hospital earlier in the week. Normally, I would have cancelled the trip, but my niece has had quite a dramatic entrance into the world, arriving 11 weeks early, and is already over a month old and in a special care unit. I was determined to go see her! Which meant taking things very easy and using my wheelchair when out and about.

    I don’t really like the wheelchair. Someone has to push me, so I can’t choose where I’m going or looking. And my mum also has a habit of letting go of it without putting the brakes on, making it roll backwards or forwards with me still in it! Other people either make huge efforts to get out of the way or they ignore you completely and talk to whoever is pushing you- there doesn’t seem to be an in between. I can physically walk, but I can’t walk far without feeling ill, but people don’t get that and give me weird looks when I get out of the chair. Anyway, I digress. I like the wheelchair because it means I can still be involved, but I don’t like it, if that makes sense. 

    My niece obviously doesn’t care because she’s a baby. But my nephew is at the ‘what’s that?’ And ‘why?’ stage, and he’s never seen his auntie use a wheelchair before. He looked at it a bit confused for all of about 9 seconds, but then that’s how he looks at me in general whenever we see him for the first time in a while. Then he got over it and moved on. 

    Here’s the thing, adults don’t know how to adapt. Some crouch to your level, some talk over your head and ignore you. Others talk to you like you’re a child or you don’t understand English. People say things like ‘it’s good you can do X considering you’re in a wheelchair’. Lots dont even say the word ‘wheelchair’ they just gesture at it and miss it out, like it’s something to be embarrassed about. It tends to be adults who know someone with a disability who are able to manage to maintain a ‘normal’ attitude towards it. Even well intentioned people or people I know reasonably well still feel and act a bit awkward around it. 

    My nephew, on the other hand, saw his Auntie ‘Bell’ (that’s what he calls me). And that was it. He wanted to play with his yellow ball, but he wanted to include me too when it was my turn, so he brought it to me or kicked it to the front of the chair so I could kick it back. When I got out briefly and played for a few minutes at a time, he went with it, and then didn’t moan when I sat back down and I changed the ‘rules’ again. (He’s also at that stage where he has a very clear idea of what the rules of his game are but can’t quite communicate them). At one point, he wanted me to get and look after his ball while he did something else. So he turned to my husband and said ‘get Bell please’, meaning, ‘go get her in her chair so she can come here and look after my ball and watch me’. He’s only 2, but he made me feel a lot more included in life than a lot of adults do. Even more so when you think that we were playing, which is something that can be quite physically challenging and potentially complicated to adapt to be disabled friendly. I didn’t feel I had to put on a show for him and pretend to be ‘normal’, I got to play with him on my terms without being made to feel bad or awkward about it. He was very adamant that others gave me my turn with the ball as well, just like he was with everyone else. 

    So if a 2 year old who hasn’t had many if any interactions with a disabled person in a wheelchair can ‘get it’ and make accommodations really easily, why can’t adults? Maybe it’s a fear of saying something wrong or they can’t think creatively or just general panic. I don’t know. But some things in general I really appreciate when out and about are: 

    • Talking to me rather than (or as well as) the person I’m with.
    • If you’re not sure what I can and can’t manage, ask me. I’d rather be asked than have assumptions made.
    • I don’t mind people helping me, but it has to actually be helpful. I have ways of doing things so sometimes people’s ‘help’ actually makes it harder. Ask me.
    • Don’t just randomly move me. It’s essentially kidnapping! If you wouldn’t just move a pushchair, don’t move me.
    • Avoid Jesus or miracle jokes if I get up and walk for a bit 😉 it’s not funny hearing the same joke over and over, nor is it miraculous. Children have pushchairs for when they get tired, I have my wheelchair- it’s the same. 
    • I usually plan out routes or check out accessibility on days I know I’m going to use my wheelchair. So I might ask questions beforehand. If plans change, it’s helpful to me if I’m warned so I can rethink or make it so that I can still be involved but not annoy other people as well 🙂 If you suddenly want to climb a mountain as part of our day out  (extreme I know), I’d bring a book and sit in a cafe instead while you did that, for example, rather than trying to get my husband or friends to push me up a hill! 

    There are lots of barriers that sadly do exist, even though they shouldn’t, to moving around in a wheelchair. But interactions with other human beings shouldn’t be one of those. 🙂