Getting Anxious About Consultant Appointments

I’ve got a few appointments coming up with some ‘big’ doctors. They might not actually come up with anything at these appointments (lots of tests planned) but they’re ‘big’ ones in the sense that I won’t know more than they do about endocrine-y things- they’re the big bosses. That makes me sound like I don’t have much faith in my other doctors, who are also helpful, but I do spend a lot of time in some appointments explaining what my current diagnosis is and how it interacts with other bits of the body because they don’t understand it. Not really the way it’s supposed to work! 

I get anxious about consultant appointments but not for the reasons you might think. 

Getting ‘bad’ news

I’m not worried about bad news, in fact the best appointments I’ve had have been the ones where I’ve been given bad news. There’s actually something tangible to work with then! The one that stands out most in mind is where I got told I needed to make permanent life changes as my current life was killing me. It was a relief to hear this because it meant I had something I could work with and take control of rather than trying to keep it all going. If you feel sick already, you’re being told something you already know, it’s not a surprise. 

So you might be thinking if I’m not anxious about the thing that most people get anxious about, what do I have to worry about? Basically, I have a similar level of anxiety to how people feel about having a big meeting with clients or when they’ve got a business trip planned: sense of anticipation, the desperate need for everything leading up to it to go well, stakes are high kind of feeling. Just like flying internationally, going to the hospital (for me) feels a logistical nightmare. 

Getting up early

Most of my appointments are morning clinic ones, and even if they start at 11am, I still have to be up and functioning a lot earlier than normal. Which I struggle with. I also have to take tablets and eat at an earlier time, which messes with me for the next couple of days. 

Travelling to the appointment

I can’t get myself to the appointment which means I have to rely on someone else taking me. It’s not a big worry, it’s just another thing to factor in. 

Getting to the appointment

Two things which tend to happen when I have to get up early is I need to wee every 10 minutes and I also get a terrible stomach ache. So the journey is usually uncomfortable for me.

Parking

Lots of people hate parking in hospitals because it’s one of the most irritating things in the world. There are never enough spaces and you have to leave an extra half an hour because it can take that long to find a space. But I also have to factor in I can’t walk far, and hospitals are about the only place your disabled badge is useless (because there are a lot of disabled people). 

Walking to the appointment

I have to leave extra time to get from the car to the appointment because I’ll:

A) need the toilet so have to go there first 

B) need a few rests to get to the right department 

C) want to leave time to cool down because I’ll be sweating a lot by now and don’t want to see my doctor looking that disgusting 

D) I’ll drink a lot of water to cool down so I’ll need to go to the toilet again. The more I walk to the toilet, the more hot I get, so I drink more water…

Sometimes I use a wheelchair but they’re like gold dust.

Booking in

Outpatient departments are noisy and tend to be open places with lots of clinics. I find that level of noise hard to deal with so talking to the receptionist can sometimes be tricky if they don’t talk clearly enough. I also will struggle to stand in any type of queue after walking that distance. 

Plus I have lots of appointments. So part of me is always worried while booking in that I’ve got the date or time mixed up, or I’m in the wrong hospital. 

Doing obs

You always have to have your BP, heartrate, weight and height done before clinic. My BP and HR are always high in clinic partly because I feel like I’ve run a marathon, partly due to white coat syndrome. My weight is a sore spot: the person doing the obs doesn’t know me and doesn’t know my case but there’s a ‘make every contact count’ policy, so I nearly always get told I’m overweight with a pitying/disapproving glance. Which leaves me wanting to scream at them because my weight is part of my complex medical problem which people are still trying to work out. Instead I listen to their lectures, smile and walk out quietly seething.

Seeing the doctor

So I’m already ridiculously wound up from everything before I even get to the doctor’s room. I worry that the doctor won’t be able to help me because they’re waiting for further input from other teams, need blood work or because it’s a waiting game thing- the thing with endocrine disorders is that you have to keep testing because things change all the time, even on treatment. I’m always anxious they ‘won’t believe’ me, even though I tell the truth and am a good patient. I don’t always trust them if they get fundamentals of my condition wrong. I worry about getting fobbed off. I feel bloody knackered because I basically need a science degree to understand half the words they’re saying- endocrinology is not easy. I get the most anxious that I’m just going to be told to get on with it (which happened a lot in the beginning), and left to deal with it by myself. Or that the next review will be in 6 months

I always go with the hope that something will change or there’ll be some new diagnosis which will mean a step forward, knowing fine well there probably won’t be. But it’s good to try and be a bit positive! It’s a bizarre feeling to leave the appointment disappointed that there’s ‘nothing wrong’ with you (that they can find currently), because what it really means is that there *is* something wrong but they haven’t found it yet. Which means you have to go back to feeling awful and despondent and wait for the next round of tests and appointments to start the cycle again. Realistically, I’m not going to miraculously feel better until someone works out everything that’s making me ill in the first place. And it’s a giant puzzle where different pieces keep going missing. 

There are lots of challenges and anxieties for me due to the logistics of going to an appointment. But the hardest bit is walking out the door knowing that there’s very little chance of things improving for another X months at least. The clock starts again and all you can do is concentrate on one day at a time. I go to a lot of medical appointments so the idea of seeing a doctor and hearing news doesn’t make me anxious by itself. It’s what they’re not able to tell me because I’m a bit of an anomaly and how they can’t help me which I worry about the most. 

Why Chronic Illness is a Bit Like Being in Prison

Bear with me with this one… I haven’t been sleeping well at all recently which means lots of midnight Netflix and crocheting sessions for me. My documentary of choice at the moment is a series about inmates in different American prisons/jails (there’s a difference, I’ve learnt!) and their experiences of being incarcerated. Not very light hearted, but I actually find ‘people watching’ fascinating. Plus I spent most of my career working with pupils who were ‘at risk of offending/reoffending’, so it’s doubly interesting for me.

But some of the stuff inmates were saying in interviews didn’t just resonate with me in terms of thinking about my ex-pupils. Now, clearly I do not have lots of gang tattoos, or a gang for that matter, unless you count my crocheted animal menagerie, but I did find myself empathising with them because of the situation I find myself in- being chronically ill. Here’s how having a chronic illness is a little bit like being in prison…:

You have a long wait and a bunch of ‘hearings’.

Prisoners have to jump through the hoops of the justice system, and a lot of that time is spent waiting for a 10 minute hearing, to then spend more time waiting. Which is a lot like being on the waiting list of hospital tests and doctors’ appointments. I’m talking about when you’re home all day every day feeling awful from chronic illness, not managing to maintain most of your lifestyle but having an upset stomach or migraines sometimes. Your life is on hold until the next ‘bit’.

Then someone tells you your fate and you get sentenced.

After all this too-in and fro-ing, someone hopefully has the balls to turn around and tell you how long you’re going to be dealing with the illness for i.e. your sentence. It could be a few months, a few years or life. The one advantage of being a prisoner is that they usually can’t wait to tell you the verdict once they have one, whereas with chronic illness there’s a lot of beating around the bush and reading between the lines involved- doctors don’t like committing to things unless they’re 100% sure, which doesn’t happen often.

You might get ‘not guilty’ and get to walk free.

Yep, you’ve got a long term condition, it might be forever, but take your meds and you’ll be able to get on with your life, except maybe for a couple of periods of illness.

You could get probation.

Which means you’re not out of the woods. You’ve had a scare e,g a heart attack, but make some lifestyle choices, take some meds and reflect on how lucky you’ve been and you can eventually get back to your life before with some changes. Except your offence will be taken into account in any future cases e.g. if you have another heart attack, you will probably end up doing some jail time.

Jail Time

Jail is where you go where you’ve either not been fully charged or you’ve got a really short sentence not worth sending you to prison for (according to my documentary). You’re sick for a little while, you might have to go to hospital a lot and have some nasty treatments, but once you’re done you can say you’ve ‘beaten’ the illness. Sometimes illnesses come back (reoffend) and you have to do a similar thing again.

You might get a long sentence.

Of a few years or even life. Except it’s not ‘without parole’, so you’re secretly hoping that someone somewhere has made a massive mistake and will release you from prison and say you don’t actually have the illness or that it’s made some dramatic improvements. Or that medical science progresses and gives you a new treatment. It’s a long shot, but, just like the prisoners, you have to have something to feel hopeful about to get you out of bed. And, just like them, you make the most with what you’ve got and take each day as it comes.

Or you could get Life Without Parole.

One guy said ‘I’m never getting out of here, so what’s the point in trying? Why bother being good when it won’t make any difference to my sentence?’ I found myself agreeing (I hear you bro’, in my best gangster accent!). Some of us are stuck with our illnesses forever. They won’t get better. It’s bloody miserable thinking that ‘this could be it’. In my case, I doubt medical science will come up with anything while I’m still alive since the current treatment is archaic enough already it would take miracles to come up with something life altering. Plus no one cares because it’s rare. You have to watch the ‘free world from your window’, which is what another inmate was doing. He watched cars on the highway all day.

Death Penalty.

Obviously we don’t have this in the UK. But it was weird- a lot of the death row inmates said they hated being there, they had no quality of life, they spent 23 hours out of 24 in a cell by themselves with next to no possessions or human interaction, but they still wanted to avoid the death penalty and live like that for the rest of their lives. I have some human interaction, but I spend a lot of time by myself during the day, can’t go out myself and don’t have a lot of freedom because my illness limits me so much. It’s hard work every day, but I still want to avoid the ‘death penalty’ too.

You get a lot of visitors to start off with.

The inmates found that a lot of their families came less and less frequently the longer they were in prison for. They didn’t really know why, it just happened. It obviously puts a strain on the family outside of prison too. There are a few core individuals for each inmate who keep coming, but very few had regular visitors once they’d been there 5 years.

People take sides.

Inmates found that people either fell into the ‘we think you’re guilty/innocent’ camps. There was no in between. It kind of is the same with chronic illness, since a lot of people seem to think that chronic illness is something you inflict upon yourself, which it isn’t.

You suddenly start to appreciate little things.

One inmate got moved from max security to a slightly lower level. He’d been in isolation for 10 years and finally was able to have a roommate and access to the commissary. He loved drinking ice water because he hadn’t had that option in max security. I’m kind of the same with some things now. I like being able to make my own cup of tea because it’s one of the few things I can actually do for myself. And I like tea. I feel a sense of achievement from finishing something I crochet in a way I wouldn’t have done before.

You don’t have any choice but to keep getting up every day.

They get up to the same routine. I get up to the same routine. There’s no spontaneity. You feel trapped. You get communications from people out in the real world and wish you were there too. Thankfully, I don’t have a prison warden breathing down my neck. And I don’t have to sleep in a dorm.

Here’s the thing though. What I have learnt from this programme is the fact that you can actually just be in the wrong place at the wrong time. People make bad choices and end up in prison e.g. did you know that if a murder happens at the same time as you’re committing a crime, even if you had nothing to do with it, you end up being charged for that murder too? So one woman was robbing a shop to feed her kid and someone else came and shot the owner. He got away, she didn’t. She got charged for murder. You can equally have an accident which leaves you unable to walk because you decided to do cliff diving. And, let’s face it, everyone is kind of bending the ‘law’ to suit themselves, so it’s just a matter of time before you get caught e.g people smoke, drink alcohol or eat unhealthily but because they haven’t had to worry about the consequences of it yet, they don’t- everyone assumes it’ll happen to someone else.

But illness doesn’t happen to ‘someone else’. It happens to a lot of people, it just depends on the degree and the sentence. It’s great if your illness is short lived, like a year or two even (even if it is scary), but for those of us serving long sentences, it doesn’t get any easier every day just because we’ve been serving time for it longer. However, there are some inmates and some people with chronic illness who are determined to make the best of what they’ve got and find other ways of enjoying the freedoms they do have. Every little counts.

If I suddenly start expressing a need for gold teeth or trading food stuffs for favours with people then someone needs to at least try and bail me out. For now, I’ll keep getting up every day, watching the world via social media or my window and crocheting my gang members.

I Don’t Have Sleep Apnea…

A couple of months ago, I did a sleep study to see if I have a condition called sleep apnea, which leaves you with interrupted sleep and fatigue. I should say that the results came through a lot more speedily than I’ve written this post! 

The test showed I don’t have sleep apnea. Good, right? Well, yes and no. Sleep apnea is relatively easy to treat, so if I did have it, I could have probably started treatment by now and might be actually sleeping a bit better, rather than being awake at 3am not being able to sleep like I am now! Instead, I’m now 3 years into only getting 3-4 hours of broken sleep per night, if that. 

So it’s back to the drawing board. My GP came up with some theories as to why I wasn’t sleeping a while ago: 

  1. Sleep apnea
  2. Anxiety
  3. Steroid dose too high
  4. Poor sleep routine 
  5. Something endocrine related

I have to admit being a tad frustrated by the entire process. Everything feels a lot worse when you can’t sleep, particularly if you have a condition where you feel fatigued all the time anyway. I’ve been pretty sure for the past 18 months that it’s endocrine related e.g. Adrenal, thyroid or blood sugar, but really struggled to get anyone to listen to my theory for a long time. 

I can see why my GP put anxiety on the list because of the way I wake up- suddenly, sweating, feeling sick, heart beating funnily. But I knew it wasn’t anxiety related because it really doesn’t feel like anxiety. I also knew it wasn’t because my steroid dose was too high, but my steroid dose is something my GP and I have disagreed about for a long time. To be fair to her, I’m not a straight forward patient and I have 3 endocrinologists now who are all scratching their heads. So really, she’s just doing her job by being thorough and looking at all possibilities. Some patients on steroids do have issues sleeping because it keeps them awake. However, I can go to sleep fine but wake up later. I wouldn’t be able to go to sleep in the first place if it was due to steroids being too high. My symptoms also improve and I go back to sleep a lot quicker if I take 2.5mg hydrocortisone when I wake up. I’m not allowed to do that every night though currently. I have to get up to go to the toilet a lot overnight, which also points to endocrine. I don’t have a poor sleep routine either, but it’s tricky to justify that one to people, since lots of other patients lie about this so there’s already a precedent. 

The sleep study wasn’t a waste of time though. It picked up that I have restless sleep, and that I have an irregular heart rhythm and slightly decreased oxygen sats while I’m asleep, both of which I know happen when I’m low on cortisol. Whichever way you look at it, anxiety can’t be the reason my heart rate and o2 are a bit ‘off’ while I’m asleep. 

Which brings us back to it possibly being something endocrine related. I completely appreciate why it’s important to do tests to rule things out as well as rule things in when investigating problems. But it’s so frustrating as a patient to repeat yourself over and over to be told that there isn’t any foundation in your theory at all medically by several people (including one of my ex endos), only to find out years later that actually there maybe is. I have no idea what the endocrine thing is, mind you, but the sleep study at least now justifies some tests which people were reluctant to do beforehand which might explain things. 

I’ve now got 3 endos, like I said, and they’re willing to explore my sleeping difficulties in depth, which I’m relieved about. The sleep study ruled some things out so brought us a step closer, even if it isn’t immediately obvious. In a way, I kind of wish it had showed sleep apnea so I could start treatment. But as I’ve not had a full night’s sleep for three years, I guess a few more months won’t make much difference! 

So I’m 30… 30 things before 30

I had my 30th birthday in May, so it’s time to see how I got on with my 30 things before 30 list. Mine was never as ‘exciting’ as other people’s travel and adventure plans, but I wrote it after I had to stop working due to illness and needed something fun to focus on. I haven’t managed to complete all of it, mostly because of illness, but I think I’ve given it a good go!

1. Ride a horse. This isn’t physically possible for me to do anymore. However, a friend came to me in a dream and said that I should ride a carousel horse instead. So the next time I see a carousel, I shall ride a horse!

2. Go on a spa day. Again, not possible for me to do anymore. But a friend came over and did my nails for me (thank you!) which was pretty close and a nice treat! 🙂

img_1457.jpg
3. Make a wearable piece of clothing. I have made headbands and worn them out in public.


4. Volunteer for a charity. I’ve done a lot of this in the past year, reindeer post for Post Pals, volunteering at the endocrine conference for Addison’s UK and setting up my own charity-based venture on my Out With Animals blog.


5. Go to a Christmas Market that isn’t just the one in Birmingham. I didn’t get out of the Midlands to a Christmas market, but I went to ones in Coventry, Solihull and Blenheim Palace as well as the one in Birmingham.


6. Sell at a craft fayre. Logistically, this wasn’t possible. However, I send the animals I make to people and have had a few requests for specific animals or gifts from friends. So I’m going to say I’ve completed it.

7. Go see a musical and stay the night in London. I’ve been to two concerts in the Royal Albert Hall but we didn’t stay over (too complicated). We had a lovely time!


8. Be a tourist in London. We were kind of touristy around the Albert Hall, but that was as much of a tourist as I got! Maybe sometime in the future I’ll manage this, but I’m not well enough right now.

9. Go for a picnic in a park or forest. We’ve done this a few times, although only got as far as eating ice cream in a forest! There’s something nice about picnics in the park.


10. Go punting. A friend offered to take me, but we couldn’t find a date that suited. It would be cool though!

11. Do yoga outside. I regularly do my physio outside. It’s not much and not a full yoga class but it’s a lovely way to start the day.

12. Make brioche. I’m now on a low carb diet, which means eating brioche isn’t the best idea. A friend and I were going to make it but it requires setting aside a few days for proofing and takes more effort than chucking ingredients in a bowl and mixing them, which I struggle to manage as it is!

13. Sleep in a yurt. This nearly happened for a friend’s hen party, but I wasn’t well enough to go.

14. Learn to play Sonata Pathetique mvt II all the way through. I can do this! (Kind of!)


15. Make my own fruit juice for breakfast. Mango and peach- it was good!

16. Practise Spanish in a real situation. I’ve chatted briefly in Spanish, taken part in Instagram photo challenges and done a tiny amount of reading. Plus I’ve watched a few tv programmes with Spanish in!

img_9100

17. Go/watch ice skating. This is another ‘not possible’ ones.

18. Read the Harry Potter books in order. 


19. Make mojito ice lollies. I can’t tolerate alcohol right now so another one I couldn’t do.

20. Learn how to crochet. This was something I was certain I couldn’t do. But now I love it! I mainly make animals for my Out with Animals blog or blankets.


21. Re read a book in French. Reading is hard for me at the moment. But I did read half of Twilight in French and I’m most of the way through a satire book a friend bought me for my birthday. So two halves makes a whole book right?

22. Host a raclette party. We hosted lots of them!


23. Listen to BBC proms concerts. I really enjoyed doing that last summer so plan to do the same again this year 🙂

24. Record a song on GarageBand/logic. I purposefully haven’t done this. I know how to do it, I used to teach it. I can play many pop songs on many instruments to record it in. But I think it would make me feel sad that I’m not a teacher or a musician anymore and I don’t feel like I need to prove my ability to do it that much.

25. Play Pokemon Go. I’m not good at it but I’ve played!

26. Eat Tapas. I’ve done this a few times now. And my brother now owns and cooks in a Tapas bar! 


27. Visit a castle. We visited a lot in Wales. This one is my favourite.


28. Go to the seaside/beach and paddle. We nearly did this, but the weather was tornado like so we cancelled. I’m going to Devon in the summer though so hopefully will manage a paddle then!

29. Play in a band rehearsal. I very briefly played the triangle at a band reunion event, but that’s as far as I got. I did send Elgar the Elephant to help out on my behalf though…


30. Go to a carol service. I went to one in symphony hall. It was lovely!

Like I said in my previous updates, I’ve given myself a purple rating for ones which I now can’t do. A bit like what I used to give gcse kids if they weren’t meeting their target for reasons outside of their control. So with everything considered, I think I’ve done pretty well!

The final tally stands at: 5 not completed, 1 part completed, 21 completed and 3 purple/not able to complete. 

I really enjoyed doing the challenge, and part of me wants to make another list to complete in the year coming. Obviously I won’t be 30 again, but it was a great way of thinking of some fun things I wanted to do or achieve and making sure that they actually happen. I’ll have a think about what can go on my next list!

What ‘I’m Tired’ means to me

There’s a difference between normal tired and chronically ill tired, but it’s hard to appreciate until you’ve experienced it. And even with different chronic illnesses, there’s different levels of what tired means to different people. I don’t have a point at any time of day where I don’t feel exhausted. I don’t feel better after having slept or napped. I wake up shattered and have periods where I get more shattered, but I never get any respite from being fatigued and exhausted. Which in itself is mentally exhausting! On some days, I could sleep for 23 hours out of 24 and not feel any better for it. I clearly can’t hibernate for all of my life though…

Lots of people genuinely seem to want to know what it feels like and have asked about it. So here’s some activities or feelings which are similar to the level of fatigue I feel on a normal day which other people might have experienced: 

  • Jet lag. Like across the world jet lag with a 7 hour time difference the ‘wrong way’.
  • After having had a severe stomach bug where you’re recovered and kind of eating but still feel really weak and ‘floppy’. Where standing up for a minute takes it out of you.
  • Staying 10 minutes longer than you wanted to in a sauna.
  • Going to run a marathon with no training and not being allowed to walk.
  • Having flu, the type with a high temperature so you feel out of it and hot and cold chills so that breathing feels like too much effort.
  • Not having slept for 48 hours and having to sit an exam.
  • When your brain feels frazzled because you’ve put up with constant noise for hours on end.
  • Trying to listen to a pool-side conversation while you’re underwater holding your breath. 
  • Having to carry a really heavy, giant box around all the time and not being allowed to put it down ever. 
  • Walking or wading through swamp land or thick mud 
  • Trying to go against the flow in a packed crowd. With your heavy box you can’t put down.
  • Being pulled by a current in the sea.
  • Being desperate for the toilet all day, not having eaten all day and having completed a full day at work with a banging headache and people interrupting what you’re doing every 5 seconds.
  • Rock climbing or climbing a mountain with no training in 30 degree heat.
  • The type of hangover where you can’t move even a little bit and you feel like you’re dying. 
  • Banging your head on something and the moment immediately after where the room is spinning and everything feels like it’s drained from your body. 

So because my version of ‘normal’ is most people’s idea of being unable to function, when I say ‘I’m tired’, it means ‘that’s it, I’m done, I need to sit down or sleep *right now* otherwise something bad will happen’. I don’t have ‘a little bit more’ or ‘just a bit further’ left in me, because I didn’t have that to start off with! And also, I can have my ‘normal’ level one minute and then literally plummet to zero in a matter of seconds. I think that’s the bit that’s tricky for people to empathise with, because most people do have a little bit extra energy-wise in reserve which they can access if they need to, even if it does mean digging deep. And the tired feeling doesn’t hit them as hard like a smack in the face- it’s a more gradual decline. 

You get used to functioning with what you have. It’s actually pretty easy to look and act as tired as you feel, the real skill is looking ‘alright’ even when you feel like you’re dying 😉 

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 😉 

Final Update: 30 Foods Before 30

Well, I’m 30 now! So time to see how I got on with the 30 Foods before 30 challenge. It got slightly hampered by medical diets, but I tried the best I could!

1. Biscuits and Gravy. Didn’t succeed with these.

2. Musakhan Jajj. Also didn’t achieve this!

3. Freak shake. 


4. Wood Ants. I’m not against trying them, more the opportunity never came up!

5. Lobster

6. Khachapuri  I got as far as finding the recipe and then got no further!

7. Ceviche 


8. Kleftico. I’m pretty sure I actually ate this at some point but I can’t remember properly and don’t have a photo. I definitely had a really good piece of lamb at some point this year though!

9. Nutella Krispy Kreme. I tried a few of these. Just to make sure my opinion was right obviously….


10. Racelette. Turkey stew on raclette is amazing. Who knew?!


11. Afternoon Tea. 

12. Tapas. My brother now owns a Tapas bar! And he cooks it surprisingly well! (Sunbridge Lounge, Bradford– shameless plug)


13. Alcoholic Ice Lollies. I really can’t tolerate alcohol so I haven’t been brave enough to try them!

14. Proper lose leaf tea. 

15. Tartiflette. It’s made mostly out of potatoes and I now shouldn’t really eat potatoes. I ate a lot of this while I lived in France so I have actually experienced this before.

16. Dosas. I did look in Indian restaurants we went to but they didn’t serve any. I did eat them for breakfast when we were in India for a wedding though.

17. Tagine 


18. Real steak. To think this time last year I hadn’t eaten a steak before… now I have it twice a week!


19. Gelato 


20. Pecan Pie


21. Mississippi Mud Pie. I had an ice cream sundae version. It was quite nice but a bit bitter


22. Ice Cream Float


22. Hot Dog 


23. Octopus 


24. Thai food. I‘d still like to eat this out in a restaurant again but my friend made a really good curry for me

25. Chowder. Also made by my wonderful friend! I really liked this.

26. Mussels 


27. Woodfired Pizza. I had this when we went to the Royal Albert Hall for a concert. It was good but I didn’t think it was super amazing.



28.churros 


29. Jerk Chicken & 30. Sweet potato fries. 


Not too bad an effort! I need to say thank you to my friend Rich, who helped me tackle a lot of my list by cooking things off it- he’s a really good cook. The final totals are: 5 not completed, 3 tried before but not as part of this challenge, 23 completed. 

I’m quite impressed with that. The 5 I didn’t eat was mostly because I couldn’t find them, not because I didn’t want to eat them. If I do manage to track them down, I’ll be sure to write another update 🙂

Banner photo: google stock image