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! 🙂

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!


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!

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.


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

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 😉

The Piano Guys

I’ve used the Piano Guy YouTube videos in hundreds of my music lessons. They make classical music more accessible to the kids, so I used them a lot to illustrate a specific point or technique, but also as a way of getting pupils into the classroom fast and sat down listening before the register, because they seemed to find them almost hypnotic! So I know a lot of their videos in great detail! When my husband bought us tickets for my birthday at the Royal Albert Hall, I was really excited!

I really enjoyed the concert. Jon and Steven were the ones on stage most of the time, joined by Al and Paul for a couple of pieces. They have a typical ‘dad’ sense of humour, but also talked a lot about how music had influenced them in their lives and some of the stories behind their arrangements. They’re clearly musicians rather than a gimmick, you can tell by the way they perform the socks off even simple melodies. 

The musical snob in me instantly worked out that they weren’t playing all of the parts we could hear, because physically they couldn’t be. But then they didn’t keep that a ‘secret’- Steven explained about his different cellos and the loop pedals he used in the first half and in the second half he talked about how they use technology to give them the multi tracks alongside their live performance. However, for a while I felt a bit outraged that they weren’t playing all of it live. Which is really stupid! Clearly they can play all of the parts, they’re incredible musicians, so it’s not their talent which I was questioning. The only conclusion I could come up with was the fact that in my head classical music/piano and cello music ‘should’ be played live. If I’d gone to watch a pop singer I wouldn’t be remotely bothered if they sang live to a backing track.

Then I started looking at the performance in an even more different way. Actually, these guys are bloody geniuses. They combine live music and technology to create their sound. They’ve got loop pedals attached to a cello and they use all elements of the piano when they perform. That takes incredible imagination and their arrangements are so creative and clever if you pull them apart. And they played all of it with passion and commitment, which you don’t always see. There’s no way you could accuse them of being stuffy classical musicians trying too hard to be cool by mixing in pop songs, they’re actually trying to make classical music accessible to the masses and get people excited about it. 

Which I guess I knew when I was teaching, otherwise I wouldn’t have used their videos in every lesson for years. But for some reason I lost sight of this to start with when I saw them live. I was enjoying the concert until I corrected my perception by the third song, but after that I was totally absorbed and loved every minute of it. I kind of wish I was still teaching because I could think of so much material to use! 

I loved all of it but favourites of mine were the Taylor Swift Coldplay medley of Love Story/VivaLa Vida, I want you Bach (Jackson Five and Bach) and Fight Song/Amazing Grace. We had their version of Love Story playing as I walked down the aisle at our wedding so that was a particular highlight for me seeing it live. The encore was One Direction What Makes You Beautiful with all four of the guys on stage, which was amazing. That video was one of the kids’ favourites so got played multiple times (per lesson usually), so I know every second of that in detail and it was the exact same live as on the video- incredible!

It was a brilliant concert and well worth seeing if you get the chance. I already have some Piano Guys albums but I’m very tempted to download more now! 

Photo Credits: Paul Anderson 

What a Difference 5mg Makes…

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

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

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

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

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

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

A ‘Suprise’ Party

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

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

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

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

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

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

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