How to Help Someone in an Adrenal Crisis

I wrote a post about Awareness Campaigns, and then it occurred to me that I haven’t actually explained to most people what to do if I have an Adrenal Crisis. While unlikely, it’s good to be prepared!

An Adrenal Crisis is life-threatening so you have to act fast. It comes about when the patient has experienced a ‘stressful’ event, such as being in an accident, having an injury, or being in an emotionally fraught situation, and they haven’t replaced the amount of cortisol required adequately with their oral medication. Sometimes it might be a combination of stressors. The person might be unconscious, sometimes not, but the signs of an adrenal crisis to look out for are:

  • unresponsiveness (either conscious or unconscious)
  • lethargy
  • dizziness
  • weakness
  • confusion
  • vomiting/abdominal pain/diarrhoea
  • low back or leg pain
  • seizure
  • struggling to keep awake
  • low blood sugar
  • often low blood pressure (but not always)

It gets pretty difficult to communicate even if conscious, so asking questions which are either long or require long answers won’t help- yes or no questions are better. Like:

  • Have you taken your emergency injection/stress dosed?
  • Do you need an ambulance?

If asking questions doesn’t get you a response then:

  1. Check for Medical ID Most likely in the form of a bracelet.  A lot of people also have something on the homescreen of their phone, or in the Medical ID app on Iphone. To get to this you swipe right, click emergency, click medical ID. One of these should tell you what you need to do.
  2. Call 999 preferably at the same time as giving emergency medications. State ‘adrenal crisis’. If you get asked ‘is the situation life threatening?’ then the answer is yes.
  3. Give Emergency Meds. Emergency Injections aren’t like epipens, you have to prepare it first. It looks like this:

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and has instructions with it, which are taken from:

http://www.addisons.org.uk/info/emergency/solucortefguide.html

4) First Aid If the person is unconscious for an obvious reason eg car accident then other first aid might be required as well. However, the injection is really important- CPR by itself won’t save their life.

5) Call their emergency contact. Again, usually this is on their medical ID. It’s important to let their contact know what’s happened, but they might also be able to tell you information which will help paramedics in their treatment.

I tend to cry if I need to call an ambulance. I’m not necessarily stressed (believe it or not), it’s because my system is haywire and trying to stop crying uses energy I don’t have. It’s a bit like pregnant women and their hormones in labour- you can’t really control it. Either that or I go really quiet because it takes too much energy to talk. Just keep chatting away to give me something to listen to and focus on helps. If you end up helping me or another Adrenal Insufficient person, thank you. If not, a lot of this could apply to other conditions, such as allergies and epipens 🙂

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Awareness Campaigns

Awareness Campaigns are funny things. Thanks to social media, it should be easier than ever before for us all to have awareness of conditions, but I can’t help but feel that there are so many ‘campaigns’ that the ones we really should be paying attention to are getting lost on our newsfeeds.

‘Retweet for Awareness’

An awareness campaign is supposed to tell you something useful, that you didn’t know before and make you consider it so that you can remember it in future. Nowadays, everyone knows someone with the more recurring conditions which appear on newsfeeds, such as cancer, autism, mental health conditions like anxiety and depression… So a simple ‘retweet/share for X awareness’ is pointless: If people already know that the condition exists and that people are fighting something every day, and they haven’t changed their sensitivities already, they’re unlikely to. All it does is give them the impression that they’re doing ‘something to help’ those with the condition by hitting share. That’s not awareness. Better campaigns are the ones which highlight the symptoms to look out for, promote self-exams or which actually tell you how to help someone with a condition.

Does a selfie actually help?

The ALS Ice-Bucket Challenge was good at promoting awareness for ALS in that it gave people a very slight glimpse as to what it might feel like to have ALS, and encouraged people to donate to its cause. ‘Campaigns’ which say ‘take a selfie of…. to promote…’ don’t necessarily have the same impact, and have even less if the participants don’t donate to the charity after taking the selfie. How does taking a selfie compare to someone with cancer? It really doesn’t- you not wearing make-up isn’t remotely the same as someone having to get up and face chemo. I was trying to think of something people could do to help them understand what Adrenal Insufficiency feels like, but ‘take a selfie after not sleeping for a week, then spin around on the spot’ campaign doesn’t really sound as appealing as a make-upless selfie! That said, there are some successful selfie campaigns which will potentially reach people in need- the latest one is to encourage men to talk about mental health by posting a selfie with the ‘ok’ sign. It then becomes tricky to spot the positive campaigns from the not so helpful.

It trivialises some illnesses

Lots of people have asthma. So much so, that you regularly hear people saying ‘it’s just asthma’ and then getting complacent and leaving their inhalers at home. Just because it’s common, doesn’t mean that it can’t have severe consequences. Or you hear people throwing in phrases like ‘you’re so OCD’ into every day conversation. Nobody would dream of saying ‘you’re so autistic’ as a joke, so why trivialise other illnesses? Sometimes, the more awareness campaigns exist, the more ‘trivial’ people find it. Which then increases the need for an awareness campaign, and therefore makes the way awareness is presented more important.

Competitiveness

When an illness is condensed into a brief paragraph on a Facebook status, it over simplifies the condition, which might make it easier for others to understand, but it also diminishes it slightly. Someone with crippling anxiety who can’t leave the house is not in the same position as someone who has anxiety with triggers. So you sometimes get quite militant comments from those with the more ‘severe’ versions of the condition and then aggressive ‘we still find it hard’ responses from others. Illness is hard. Some people are going to have it ‘worse’ than others, but it’s also relative- people have good days and bad days. We should be supporting each other rather than arguing about who has it worse.

Incorrect information

Sometimes the information in these campaigns is incorrect, depending on who starts them off. I saw a counter campaign by a charity about counting the amount of times a baby kicks in pregnancy recently (the counter argument being it’s changes in movement which should be tracked, not how much the baby kicks), which wouldn’t have been quite so necessary if the counting the kicks idea hadn’t been so heavily shared. Advice can also change and be out of date. Think about the amount of times you see a shared post saying ‘it’s 92 days to Christmas, share if you’re excited’ and it’s nowhere near 92 days to Christmas. Another example is cortisol and Adrenal Fatigue. Adrenal Fatigue is a condition aimed at middle-aged women who are suffering from burnout and there are all sorts of wondrous (and expensive) remedies you can take to correct your cortisol level. The problem is, Adrenal Fatigue is not actually a recognised condition by endocrine societies in most countries. So where has this supposed condition come from, and why is it compared to Adrenal Insufficiency?

I’m speaking as someone who wishes there was more (read: any) awareness about my illness. So before you click share on the latest Facebook challenge in sharing awareness, please think:

  • what’s the point of the campaign? Does it tell people useful information as to how to spot the signs? Does it give insight into what it feels like to have the condition?
  • Where has this campaign come from? Is it a reliable charity or from a person with the condition?
  • Is it accurate and up-to-date?
  • Would it actually help someone with that condition? eg does it help us understand the condition more and the impact it has on people/their families? Or include a donation to a registered charity?

If you can say ‘no’ to those questions, think twice before sharing. Awareness is only good if it’s useful and accurate. If not, it just makes it more difficult for people living with the conditions to explain what they’re dealing with to other people. I’m not doubting anyone’s good intentions in wanting to raise awareness, but it’s really important that the awareness is doing the right thing 🙂

 

Week 6: 30 Before 30

Slightly more productive on achieving things this week on my 30 before 30 list. Here’s how I got on in week 6:

3. Make a wearable piece of clothing Last week I bought the pattern, this week I cut out the pattern to the right size, and then cut out the fabric pieces. It’s slow progress because I can’t physically do it much in one day (who knew cutting was the same for me as a cardio workout for anyone else?!). I didn’t manage to cut the pieces out myself, my husband had to do it for me. I think it still counts…

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18. Read all of the Harry Potter Books in Order. I finished off The Order of the Phoenix and started the Half Blood Prince. I’m about half way through this one now.

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22. Host a Raclette Party. We had 3 friends over and had a raclette party this week! I wasn’t able to make everything myself remotely, but a friend came round to help (and did most of it). I sat at the table and chopped things up and she cooked it all. We made chorizo, meat, potatoes, garlic mushrooms and cream of spinach.

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23. Listen to BBC Proms I didn’t do an awful lot of listening this week, but I finished listening to the Jazz proms I started listening to last week.

25. Play Pokemon Go. I played a lot of Pokemon this week. This is mostly helped by the fact that my husband managed to find a cheap wheelchair on Ebay and can now take me to the park in the evenings for some fresh air. Which makes me feel about 90, so I bring my average age down by playing pokemon at the same time! This week I hatched an egg, learnt how to fight in a gym, revived and healed my pokemon and caught some new pokemon which weren’t just the rat and hippo looking one.

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Week 5: 30 Foods Before 30

I was a bit more successful this week in finding foods, and repeated some! Here’s how I got on in week 5 of 30 Foods Before 30

5. Lobster I had a burger and lobster meal in a steakhouse which meant I could try lobster. It was nice, not a favourite but definitely worth eating again. It tasted a bit like every other seafood I’ve tried so not sure why lobster is supposed to be the best though! 


9. Nutella Krispy Kreme On the way back from my lobster dinner I was having issues balancing out my blood sugar so needed something with both carbs and sugar. Nutella Krispy Kreme to the rescue! This one was a repeat but still good.


10. Raclette I hosted a raclette party this week. We had the normal raclette things like potatoes and meat, but also garlic mushrooms, cream of spinach, chorizo and different cheeses. I mostly chopped things up since I can’t stand up and actually cook, so big thanks to my friend who did most of the preparation! 


Not on my list, but definitely worth eating as it’s probably the best meal I’ve ever had: duck ‘n’ waffle. A friend made it, which makes it more impressive, but it’s basically duck and waffle and a whole load of other things that you wouldn’t think work together but really do! 


Banner photo: Google images 

Surviving a Zombie Apocalypse 

There’s a box under my bed that my husband and I refer to as ‘the zombie apocalypse box’. It’s a box of steroids, pain killers and antibiotics in different varieties and strengths. Before anyone has a panic or thinks that it’s a problem, they’ve all been prescribed to me for my use only and a lot of them are rescue packs given to me by doctors, which means that their purpose is to be kept for a ‘just in case’ occasion where I might need them, but can’t get to a doctor. Like in a zombie apocalypse! (joking).

Realistically, if there were some kind of pandemic or zombie apocalypse, I wouldn’t survive long. My body has a meltdown for very minor things, so running from zombies or trying to avoid getting sick would kill me off from the stress alone, never mind actually getting sick.

But that’s a bit depressing, hence having named it the zombie apocalypse box. Having a rubbish illness has to pay off some point, right? So we joke because we have enough medicines to keep us going for a reasonable amount of time. Plus, in order to rule out autoimmune causes of Adrenal Insufficiency, I had to have additional vaccines which the majority of the population aren’t given. So we decided that these extra vaccines make me immune to zombie attacks, and, my husband for some crazy reason never gets sick so he’ll be ok too.

You develop a bit of a morbid sense of humour when you have an illness that can kill you quite easily, otherwise you’d be too scared to do anything. I’m not remotely a believer in a zombie apocalypse actually happening, but it provides a source of amusement for me and my husband!

 

‘Behind the Scenes’ of Chronic Illness

Having a chronic illness is bad enough and has a whole bunch of regimes and elements which come with it. But there’s an awful lot going on behind the scenes, which lots of people are either unaware of or can’t see, particularly if the illness is invisible.

1.Money worries. Aside from not having a job, having a chronic illness brings with it a lot of hidden expenses. For example:

  • Hospital car parking and travel to and from hospitals. Which increases if I’m admitted to hospital.
  • Hospital TV is expensive when I’m admitted.
  • ‘Free’ social activities become hard to do, either because they’re physically unmanageable (walks in the park) or because I have to rely on services like toilets and food/drink which need paying for.
  • City centre parking/fuel because walking and public transport aren’t viable options
  • Having to eat according to specific diets brings the price of the food shop up
  • Being at home all day uses electricity and gas more than being out at work. The house also has to be at a set temperature rather than ‘just putting on a jumper’
  • Ringing premium numbers to get administrative tasks related to illness sorted
  • Paying for private treatment which isn’t available on the NHS
  • Having to buy specific toiletries or clothes to help manage symptoms

I used to be quite good at economising and there are some money saving things I would do if I were healthy. But, I have to admit that when I need to buy something, I tend to pay for the easiest thing I can find in the first shop because I don’t have the energy to be able to shop around like I used to. 

2. Isolation. Lots of ‘friends’ were sympathetic in the beginning but a lot have dwindled out. I’ve got my really good friends who continue to make the effort and I’m grateful for, but it’s still hours at a time by myself. People start to assume you get used to it. Or some people struggle with the concept of any debilitating illness which isn’t cancer and can’t understand why you’re not better yet.

3.Not being able to make plans. Both long term or short term. Life revolves around medical appointments and tests. It often feels like there’s no point in making long term plans because a test could wipe me out for a month, or a doctor might say I need to keep everything the same activity wise while I’m trialling something new. I don’t necessarily get told about these tests in advance, a lot are with a week or 2 weeks notice.  It’s also disappointing to make plans and then not to be able to do them.Which doesn’t help with the isolation.

4. Feeling like you’re to blame. I spend hours by myself. I occupy myself, but some of that time gets dedicated to ‘is there anything I could have done differently to…’ or ‘would people be better off if…’. There isn’t anything I could have done/can do differently. I know that, but my head still tries to take responsibility. 

5. Stress. Being long term sick is stressful. It has the obvious stresses for me and my husband like emergency admissions and ambulances, but it’s not like I have a condition where progress can be seen by doing a scan or a blood test- progress is hard to spot, might be a fluke and can also be rapidly reversed if I get admitted to hospital again. There’s also hidden stresses like:

  • Sometimes I need to be supervised and shouldn’t be left alone, but my husband has to work. I’ve got a couple of friends I ask to ‘sit’ with me if they’re free
  • My husband has to go away for work- I can’t look after myself for longer than a few hours at a time, so need someone to come help me
  • My husband has to do all of the household jobs because I can’t
  • I can’t get to the medical appointments I have by myself (there’s at least 2 a week) so someone has to take me
  • Keeping on top of medications and appointments can be a full time job, and I can’t do it myself
  • There’s also a lot of administrative tasks which need doing which are complicated!

6. Feelings. Doctors might help you with physical symptoms, but unless you have cancer or a ‘common’ illness, there’s not really anyone for you/your family to talk to for support or to talk about how you feel about it all with someone who ‘gets’ it. 

I. Hate. Tapering.

I hate tapering from my Stress Dose to my Baseline. It:

– gives me pins and needles and numbness which hurt

– makes my heart miss out beats and add extra ones in

– makes me paranoid and worry incessantly about things

– makes me cry for no reason

– wakes me up a lot at night 

– makes my limbs feel like they’re moving through tar

– makes my bones feel like they’re on fire

-makes me super grumpy

It makes all my ‘normal’ symptoms worse:

– I have worse stomach ache

– my brain fog is foggier

– I feel like I’m about to pass out constantly 

– my fatigue is more tiring 

– I get more anxious and depressed 

– I find noise and light harder to deal with 

– it makes my pain worse  

– it means I wake up more and can’t go back to sleep when I wake up

– I need to eat more

– I can’t stand up or walk as far 

– it makes my insides vibrate more

– I feel like I’m talking a foreign language more than usual 

– my mood is generally a lot worse

– it makes it harder to breathe

– I forget more 

– I feel more sick 

– I get more cramps and spasms

– my skin feels too small and itches more than usual 

– my temperature goes up and down quickly 

– I find it harder to make decisions 

– I need to sleep a lot

-I get more clumsy

I. Hate. Tapering. It’s the hardest thing to deal with.

How to Succeed (and fail) in Life

You know the High School idea of the mean girls sitting at one table in the dinner hall, the geeks at another, and the sporty ones elsewhere etc? That still exists. There’s just different categories or cliques now. Women are particularly bad for this. I don’t actually think it’s because people (both women and men) are intentionally categorising people, but more that’s what society has led us to believe needs to happen- we’ve all done it without realising. I’m noticing it because I don’t ‘fit’ in society at the moment- I’m jobless, childless, ‘have no purpose’ and I’m sick without having made any positive health progress for a while. So I spend a lot of time watching how society has taught us to interact. I should probably say that if you’re easily offended you should probably avoid reading this, and emphasise the point that it’s supposed to be funny, not serious or critical. 

The two main categories dictated by society seem to be ‘successful in life’ or ‘failure in life’ but there are sub categories too. Let’s start with how to succeed in life: 

Getting married/moving in with a partner

If you’re engaged and planning your wedding or planning ‘the big move’ together, your relationship is seen as moving forwards and you’re allowed to give updates on absolutely every detail involved, including every new appliance, paint colour or sequin for your dress that you buy. If you’re in a long term relationship or have been married a while, or have already moved in together, you’re not allowed to talk about such things and you’re not allowed in this category. It doesn’t matter how much you love your partner, it’s not ‘new news’.

Buying a house 

People who can buy a new house are obviously succeeding in life. It means that their income is sufficient enough that they have enough money at the end of a month to buy a bigger house. You’re not allowed to just say you want a bigger house though, you have to give ‘hints’ about how you’re trying for a baby because you’ll ‘need the extra room’. If you just want a bigger house for the sake of a bigger house, that’s not being successful, it’s failing in society. 

Getting a promotion 

You either need to be constantly looking for a better job or getting a promotion. If you’re happy in your current job and love it, you’re failing in life- how will you ever get your bigger house?

Buying a ‘big purchase’

You can put off some of the ‘so, when are you going to have a baby?‘ questions and narrowly avoid the ‘failing’ category if you buy a big purchase. A new car, TV or a second home are appropriate, they have certain status. It can’t be a used car though. Unless you can talk about the amazing features it has. 

Trying for a baby

Once you’ve moved in or got married, got your promotion and bought your bigger house, you have to immediately start trying for a baby. And you must tell people about it, but pretend to not be telling people about it, but really tell everyone not to tell anyone about it. That’s the best way to be winning at life. But if you don’t get pregnant straight away, you’re not allowed to say that you can’t get pregnant or it’s taking time, that would be failing. You have to pretend that you’ve decided to focus on your career or your next big house instead. No pressure or anything though.

Being pregnant

You’re obviously succeeding in life. You’ve entered the club of women who feel justified in making demands of other people or doing whatever they feel like and blaming it on hormones or baby-brain. If you don’t say one of those phrases at least nine times a day then you’re failing at being pregnant (and therefore life). You’ve also got to talk about your vagina and cervix to everyone later in pregnancy, either directly or indirectly is fine, otherwise you’re failing. You’re also failing if you don’t try to offer tips or consoling sympathy to those couples who didn’t get pregnant as quickly as you did- it really makes them feel better. 

Having a baby/children 

This is a very exclusive category that no one can possibly understand unless they have a baby or a child. Not enough sleep? Unconditional love? True happiness? Not possible unless you have a baby. If you’re talking about something you’ve done or enjoyed, you have to say whether your child/baby enjoyed it too. Otherwise it doesn’t count. Oh and you have to post 95 photos a day of your child(ren), join in with and be tagged in every parenthood Facebook challenge going round and discuss their pooing/weeing/vomiting habits on your status regularly, otherwise you’re failing at being a parent.

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Photo: Non-Motherhood Challenge by Ellie Taylor, BBC Source

PANIC!! You’ve got to the end of the succeeding in life categories! What do you do now?! Start back at the career move, big purchase or trying for a baby stages immediately. Alternatively, make sure you go to as many baby/children and parent groups as possible to remind everyone that you ‘have children’ and are successful. There are obviously other success stages to come, like kids starting school or going to uni or retiring, but it’s not ok to just sit around and wait for those. You must always be actively succeeding in life. 

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Photo: Calm

Here are sure ways you will be placed in the category ‘failing in life’:

Not wanting a baby

Why would you choose not to have a baby? You’re clearly a failure of a woman. You’ll change your mind at some point obviously, you don’t know what you’re saying right now.

Being content in your job

Not possible. Everyone can always earn more money. You’re wasting your career if you don’t make some kind of move, particularly if you’re a woman- women had to die for equal rights remember. Wear higher heels to the office to rectify this. 

Having something ’embarrassing’ happen to you or your family

If ‘it’ happens to you, you mustn’t talk about ‘it’ because ‘it’s’ too embarrassing. ‘It’ will, of course, be discussed at length when you’re not around. (‘It’ probably isn’t even that ‘bad’ a thing, the jungle drums of the village tribe are what makes ‘it’ ’embarrassing’. But the bottom line is the same: you’ve failed somewhere). I would mention examples, but I’m not supposed to talk about ’embarrassing things’. 

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Photo: Pinterest 

There are some subgroups which are undecided as to whether you’re succeeding or failing in life, depending on how you react:

Medically not being able to get pregnant 

If you let people give you consoling, pitying glances and are happy to let everyone talk about how brave you are and how it shouldn’t happen to you (mostly behind your back while people are ‘competing’ as to who has the most knowledge), then you are still succeeding in life. Side note: Consoling doesn’t mean you being able to control when you want other people’s support, it has to be when it suits them and you’re not allowed to move on, grieve or be happy at your own pace. You can’t make your situation too much about you, you know. Your purpose in life is to remind everyone how lucky they are. They will regularly make sympathetic noises and clutch their own children to their chest in your presence at random points to demonstrate this. And you can always fall back on your career.

If you take it on the chin and don’t want to play the part of the ‘poor woman who can’t get pregnant’ then you’re failing in life and have no purpose. Plus you’ll never be able to say you know what lack of sleep, unconditional love or happiness are either. 

Getting sick/having an illness 

Again, you’re succeeding if you’re happy to let people console you and say ‘poor you’ a lot- you’re helping them realise how lucky they are. But it depends on what you get sick with: it has to be judged as serious enough by society in order to qualify. If it isn’t deemed serious or if you don’t want to be pitied, or, worse, if you manage to still be positive about life while being sick, then you’re failing in life. People will still talk behind your back and share information, but it’ll just put you more in the failure box because their interpretation of medical fact clearly counts more than any doctor. Unless you are positive enough to be called an inspiration, but no one really knows the criteria for that.

You have to have a courageous fight with your illness and get better. It doesn’t count if you’re never going to get better or it’s invisible. If you don’t get better after an unspecified period of time, the support stops without warning because it’s carefully rationed out. You’ve got to keep positive, remember.  

When someone dies

I think you can guess how it goes by now. Let people console you= succeeding. Reacting in a way that suits you and grieving how you want= failing in life.

Whether you’re ‘succeeding’ or ‘failing’ in life shouldn’t be measured against the rest of society and what everyone else is doing. It should be whatever is right for you. But society conventions are bloody hard to break sometimes! 

** I wrote this completely as a joke. If you’re ‘succeeding’ in life, this isn’t a passive aggressive dig – I’m happy you’re happy! 🙂 **

Week 4: 30 Foods Before 30

I haven’t had a great week with my Adrenal Insufficiency, meaning I spent a lot of time in bed or lying down, which meant not a lot of time to seek out different foods. Here’s what I did manage this week on my 30 Foods Before 30 List:

22. Hot Dog The closest thing to an authentic American Hot Dog was to go to TGI Friday’s and have their version. I opted for the Jack Daniel’s Chilli Dog which had beef chilli (obviously), mustard and chillies with the hot dog. I chose to have it with sweet potato fries (number 30 on the list). It was good, but it didn’t taste much different from the frankfurters we used to have as kids. It was also incredibly awkward to eat, so I resorted to eating it with a knife and fork rather than making as massive mess! Not a food I’d choose again, but definitely ticked off the list.

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Banner Image: Stock Google Image

Week 5: 30 Before 30

I haven’t had a great week with my Adrenal Insufficiency, meaning I spent a lot of time in bed or lying down. But here’s what I did manage to achieve on my 30 things before 30 list this week:

3. Make a wearable piece of clothing. Sewing has been put on hold since my last hospital admission, as I’ve not been well enough to do it. Last week I bought a skirt pattern online which is supposed to be suitable for beginners, so I’ll hopefully be starting that soon!

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14.Learn to play Mvt II Sonata Pathetique (Beethoven) all the way through. I can now play the bars I couldn’t play last week. But that’s as much as I managed to learn this week!

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18.Read all of the Harry Potter books in order. I’m about 20 pages short of finishing the Order of the Phoenix and will be moving onto Half Blood Prince soon after.

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23.Listen to BBC Proms concerts. I spent a lot of time asleep or wanting quiet this week. So listening to music kind of got put on the back burner. I did listen to some of the Mahler prom and started listening to the National Youth Jazz Orchestra of GB prom this week though.