Lemon and orange barley water: recipe

I’ve blogged about this particular drink a couple of times. First, it was recommended to me as the drink to have when you’re experiencing bladder issues. Then, I followed that blog up to say that it does work. Since drinking the lemon barley water, my bladder has been considerable less painful.

Unfortunately, the only version of the drink that I am able to find in the shops is the Robinsons brand. I’ve noticed that Morrison’s sell their own brand of barley water squashes, but not a lemon barley water flavour. So, at £1.99, it feels like a lot of money for a drink that I’m not exactly enjoying. It’s just lemon squash. It’s not something that I get all that excited about – it’s not as nice as lime cordial…

My step-mum, Fi, suggested that I might make my own lemon barley water. So, I looked at a few recipes online and I have come up with my own concoction…

  1. I washed 100g of pearl barley in cold water
  2. I put the pearl barley into my crockpot with 1.5 litres of water
  3. I added 2 sliced lemons and 1 sliced orange to the crockpot
  4. I left these components on a low heat for 3 hours
  5. I switched off the crockpot and removed the fruit
  6. When the fruit was cool enough to handle, I squeezed it into the cooling crockpot
  7. While the mixture was still warm, I poured it through a sieve and added 4 tablespoons of honey
  8. I left the drink to cool before putting it in the fridge

Of all the recipes I read, not once did I read to use a crockpot. The thing is, I love my crockpot (thanks Shellie) and I haven’t been able to use it much recently. I thought, if I had to cook the barley anyway, I should do it in the crockpot, with the fruit, so all the flavours can mingle and infuse. I thought that this way, I would get more flavour in more time.

The drink is quite sharp – but I like sharp. The orange and honey have softened it slightly (I hope!) but it is still quite sharp to taste. If sharpness isn’t something you desire from a drink, I guess you could dilute it with water or lemonade or add some more honey…

I have found the drink to be very refreshing served cold with a few ice cubes in. I just hope that it has the same effects as the bottled lemon barley squash! I guess, if summer returns, I could pour some into ice lolly moulds and make myself a couple of ice lollies.

To make 1.5 litres of this drink, it has cost me less than £1. I know that with a bottle of squash I could get more volume for my money, but if this makes a nice change from the squash then it’s all that matters.

Of course, to make Fi and my Nanna proud of me, I have had to decant my drink into a Tupperware jug so that I can store it in the fridge. It’s the only possible way that I can keep my drink fresh…

Definite proof that myths aren’t always myths!

Last week I was questioning the cystitis myth – what is the best thing to drink? Today, I’m blogging to let you know that I’ve had to concede to the fact that lemon and barley water squash might not be a myth. I don’t think Robinsons are exploiting those with painful bladders anymore.

At first I was cynical. I was doubtful. I scoffed.

However, I listened to what the lady in the waiting room told me. I followed what I consider to be ‘armchair expert advice’. And, since drinking the lemon and barley water squash, things are a lot calmer…

I have considered that it’s all psychological, but I really don’t think it is.

I had one evening where I was in considerable pain. I then remembered that I hadn’t drunk any of this expensive squash during the day. After having a couple of pints I was relieved of what I had been experiencing. I wasn’t getting any of this relief from cranberry juice – and that’s the drink that everyone keeps recommending!! Even Tigger is happy by the outcome of the lemon and barley water squash:

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Of course, inquisitive me was curious as to what is in lemon and barley water squash to make it ‘kinder’ on the bladder. Lanarkshire NHS Trust advises patients to drink lemon and barley water for cystitis – so, I read that as it’s ‘medically’ advised, so surely I should be able to get this on prescription? 😉 The only other information I can find is that it alkalises the pH of the urine.

It would be better (for my purse) if I could find a supermarket own brand – perhaps they are there and I’m just not looking hard enough, but for now, I’ll spend out ~£2 for a bottle of this stuff.

So, myths really aren’t just myths. Sometimes there are truths behind the myths.

Entry 4

Entry 4 from Journal of the Nightmare Patient:

Dr Augustus and his team (there are so many of them!) have visited me on the ward this afternoon. He shared with me the diagnoses that he’s considering: aggressive leukaemia or aplastic anaemia.

I’ve heard of leukaemia. I know that’s a serious disease even without the prefix of “aggressive”. I know that leukaemia is cancer. I hope it’s aplastic anaemia and not leukaemia. Aplastic anaemia doesn’t sound scary. Aplastic anaemia doesn’t sound life threatening. I can’t remember what Dr Augustus said about aplastic anaemia – I wasn’t ignoring him, I just wasn’t really listening.

Of all the questions I could have asked him, I could only think of one that I want the answer to! It forced its way to the forefront of my mind. It blocked out all other questions that I could (and maybe should) have been asked:

“Am I going to die?”

No matter how many different ways I worded the question, Dr Augustus gave me the same answer: “I don’t know”. I know that he doesn’t have a crystal ball. I know that he can’t look into the future. I know he can’t give me the answer that I so badly need. He doesn’t know himself whether I’ll live or die (hence “I don’t know”). He only has the facts as they are presented before him. He doesn’t know what’s going to happen. He doesn’t even have a final diagnosis for me; he’s only working on speculation. But, Dr Augustus’ refusal to answer with anything other than “I don’t know”, infuriates me. What kind of a doctor is he?! He must have some idea!!!!????

I’m now sat on my hospital bed, crying my eyes out like a pathetic child. The nurses have drawn the curtains around me to give me some privacy. Or have they closed the curtains so that I don’t scare the other patients?! I feel alone. I’m terrified.

What’s happening to me????

It isn’t fair. I’ve only come to the hospital for a routine operation. How has it lead to a life-threatening disease being diagnosed?????? Until last week I had been leading the life of a “normal” twenty-year-old. Now, my world is being tipped upside down.

[Link to the .com store]

Cystitis myth?

I have been feeling a bit rough in the last few days. I have a bit of a problem. I have cystitis that is a kind-of side effect to something I’m currently going through. All I know is that it definitely isn’t a bladder infection.

I’ve had cystitis before, but I’ve always been given some medicine. I would then take the medicine and the symptoms would go away. Not now. No. Now, I have to suffer.

I am keeping hydrated, as instructed by the professionals who know what they’re talking about. However, what goes in must come out. Yep. What goes in one end has to pass through my system and come out of the other end. And then I’m back to square 1: it hurts.

I’ve reduced the intake of things that are ‘known’ to aggravate the problem – so I’ve cut back on mugs of tea and glasses of cola. I’m not a big alcohol drinker, so by not drinking, I’m not missing anything. However, the pains persist and the professionals sympathetically remind me to drink, drink, drink.

Whenever I’ve had cystitis before, I’ve turned to my trusted friend, cranberry (and raspberry) juice (because I don’t like plain cranberry juice very much). I know that some people might scoff and exclaim “that old wives tale!” but, in the past, it has helped. Or, has it been that the medicine has worked faster than I thought it did? Because, it’s not doing very much for me at the moment. I notice a difference when I drink it, but perhaps that is psychological?

This morning, I was talking to a lady who seemed to know her stuff. She understood the anatomy and she understood the side effects. Then, I went to the supermarket and I did something that I pride myself on rarely doing: I took the advice of an armchair expert who I barely know. I bought some lemon and barley water.

It’s probably too early to tell whether this will help me, but I’m pretty much at the point where I will try anything to make life in the bathroom a little nicer. But, it is interesting, isn’t it? We have all these methods that have been “tried and tested”, and we’re still not really sure what will help and what won’t. I’ve had some doctors really promote drinking cranberry juice, while others say “I wouldn’t bother”. Over the next few days, if I don’t see any improvement, I will conclude that (for myself at least) cranberry juice and barley water are just old wives tales…

Entry 42

As promised in Monday’s post, I am re-blogging to entries from Journal of the Nightmare Patient which I previously shared under my ‘nom de plume’. This is the second entry from my e-Book:

One infection clears up. The prospects of being discharged are promising. Then, another infection makes itself known.

The cycle keeps repeat itself, over and over again.

There’s no respite. None at all.

As soon as the doctors think that they are on top of things, something else comes along. We are constantly taking one step forward and several steps back.

I’m fighting a losing battle.

I’ve lost count of the number of central venous catheter’s or PICC lines I’ve had put in and removed as a precaution of being an infection source. Every time the doctors take one line out, some form of line goes back in a few days later before it has to come out because of an infection risk.

I feel alone. I don’t know whether I’ll live or die. I struggle to find anyone who understands what’s was going through my head. People are getting bored of me declining invitations to socialise. They’ve stopped inviting me out altogether now because my response are always the same: “no, I’m in hospital”. Most communication has stopped and they leave me alone as they carry on with their lives. But then there are friends, like Gazza, who I’ve neglected. Texting consumes effort and there isn’t much to text about. Phone calls are near impossible when my I feel so unwell and my signal is rubbish. Maintaining friendships has became difficult because I feel too tired to make the effort. But, I’m also looking after number one. I know I push  away the people who care about me because I’ve convinced myself that one day they’ll also get bored and forget about me. I don’t know how to get out of this horrible cycle.

I feel isolated. The cards of well wishes pile on the door mat from people who don’t usually give me the time of day. These well wishes are meaningless. Whenever I’m alone in this isolation room, I’m surrounded by these cards, but where are the visitors to keep me company? Despite offers of “if there’s anything I can do, let me know”, which seem to be steadily flowing in, very few have delivered on the “you could come and visit me” suggestion. The worst excuse for not visiting is “I don’t like hospitals”, which disheartens me. I don’t chose to be here. This isn’t a holiday for me.

I’m also worrying about my money… It’s an expensive luxury to be a patient. The sick pay has run out and I’m living on an incredibly tight budget.

Being a patient doesn’t stop the financial obligations. Being a patient doesn’t mean that everything suddenly becomes free.

When I’m in hospital, direct debits still have to be paid. While in hospital I have to pay to watch TV and access the Internet. I have to pay to read a newspaper. I still have to buy birthday cards and the toiletries that I need.

When out of hospital I have to pay my way. I can’t walk out of a supermarket with a basketful of shopping without paying. I can’t do activities which cost money for free because I’m sick and not working. It would be more economical if I had gone to prison – at least prisoners (apparently) earn money while serving their sentences so that they have some cash once they’ve served their time!

There’s also a battle for me to claim benefits while I’m sick because I can’t attend their appointments to prove that I’m sick. I don’t understand why it’s so difficult when there are so many people claiming a load of benefits, leading comfortable lives and even get a house chucked in for free if they need one! Benefits are supposedly available for those in need but I see that they’re more easily available for those who plan to never work and opt for the easiest way of life. I have to prove that I’m unable to work, and even then the benefit assessors haven’t accepted the many hospital letters that I’ve supplied them with. The work shy and lazy bums appear to be more equipped with the knowledge of how to claim every benefit that they’re ‘entitled’ to; I must have missed that lesson at school. Living on benefits shouldn’t be a way of life. Benefits should be capped. They should only be available for times of real hardship.

Entry 23

As I promised in Monday’s post, I am re-blogging the two entries from Journal of the Nightmare Patient which I had previously shared under my ‘nom de plume’:

After my last entry, I gathered my possessions together. I made sure that I was ready to leave as soon as Nanna and Grandad arrived. I was determined that I would not stay in this hospital any longer. I don’t want to stay in a hospital where the staff have no respect for me as a person, and where I can’t be ill in peace. I don’t want to be somewhere if no one listens to my voice.

While Nanna spoke with the ward manager, and tried to reason with me, Grandad stayed by my side. I’ve cried hard today. I was quite distressed this morning. I couldn’t bear to be here for moment longer. Grandad took my bags, and took me to the car.

The ward manager tried to justify my experience during the night with the fact that I’ve been transferred to this ward on a weekend, and late in the evening. I’m sorry, but it isn’t an excuse for a shitty night.

Grandad drove me back to The Town Hospital. We went to A&E and I was taken to a side room to protect me from the other patients. The nurses learnt about my recent medical history and ensured that my IV antibiotics were administered in a timely fashion, and called for Professor Bertie, who was on call today, to come and see me.

Professor Bertie wasn’t happy that I had discharged myself from The City Hospital. Both he and Nanna pleaded with me to return. It was horrible.

Professor Bertie told me that without treatment I could be dead within six months. He was blunt. He was cold in delivering the icy truth. I suppose that he had to be.

I really didn’t care.

I really don’t care.

I didn’t want to return back to this ward. Instead, I spoke about biodegradable coffins, and cheap funeral arrangements. Nanna became upset. Grandad was searching for alternative solution; he asked about private care, but Professor Bertie says that isn’t an option.

I focused on my baby half-brother who was lying in Nanna’s arms. He is only a month old. If I were to refuse to come back to The City Hospital, by the time I die, he’ll be about six months old. He’ll have no memory of me. What about all of my other siblings? What about Nanna and Grandad? What about Dad? What about all the people that I’ll be leaving behind with only a memory that I once existed?

Facts and figures swirled in my head. Out of all the people in our country, only up to 150 of them are diagnosed with aplastic anaemia per year. I’m unlucky to be one of them. I’m in the minority group, yet, I’m never lucky enough to be in the minority group of lottery winners! No matter how the odds are stacked, I am the loser. With the treatment that I’ve been sent away to receive, there is a 70% chance that it might work – but the way that my luck is going, I am likely to be in the 30% group of it not working.

The thought that I’ll be leaving behind a memory of having once existed, returned to me. Do I want that memory to be one that I’ve fought against, or one that I’ve cowardly given into because I don’t want to stay in a place where I’m treated in a way that I don’t like? Do I want that memory to be one that the people who love me can reflect upon with pride in how I’ve fought, or anger in how I’ve given up at the first hurdle? Do I want the baby to know me or have to hear about me every now and again when I’m occasionally remembered?

They made it sound like a special favour when they told me that the bed at The City Hospital was being held for me. I had to make a decision, and I had to make it quickly. I feel emotionally blackmailed by the emotions in the room earlier. I feel cornered because The City Hospital is the only place where I can receive the treatment that I need. It feels that the only person watching my back is Grandad. Maybe he and Nanna are playing “good cop, bad cop”?

Reluctantly, I’ve come back to The City Hospital. I cried for the entire journey which disappeared so quickly. Unless I want to succumb to this disease without a fight, I have no other choice. I know that I’m not in control; this isn’t a decision that I’ve chosen to make but one which I feel I’ve been forced to make.

I’ve gone to bed without any dinner. The food doesn’t appeal to me, and I’m exhausted. I haven’t eaten anything today, but given that I hardly eat most days, it doesn’t bother me that much. The choice of food that I saw on my way to my isolation room didn’t appeal to me; it either looked very dry, or looked very watery! Thankfully Nanna and Grandad are “allowed” to bring me ready meals which can be cooked in a microwave while I’m a patient here.

Do I really need permission to eat food that I like while I’m in hospital?! Do I really need permission to have anything brought in from home??? This isn’t a bloody prison!!!!!

Published

This year, I finally finished editing and consolidating the journals that I kept during and after my treatment for aplastic anaemia. In April, I decided to take the ‘brave’ step by publishing my finished piece of work. Under the nom de plume of ‘Ethel Shambles’, I uploaded my finished accomplishment on Amazon.

Last week, I was looking for a different cover for my eBook and wondered “why am I hiding behind a pen name when I blog under my real name and I Twitter under my real name?” It seems rather odd that I have fulfilled one of my ambitions (to write) and then hide behind a nom de plume when I don’t wear a mask for anything else. So, I have made another ‘brave’ decision – I edited the information for the eBook and published under my real name: R. J. Sefton.

By changing this information, I can no longer offer it as a paperback copy. It would seem that I have complicated things by changing the author, because the paperback has an assigned ISBN number. I will try and figure something out, but for now, my work is now available from Amazon on the Kindle for £1.99. Apparently when advertising the link, I ought to provide it with links to the .co.uk and the .com stores (according to some sources), so I have hyperlinked them accordingly.

This week, I shall upload the two ‘entries’ from Journal of the Nightmare Patient which I previously shared under my nom de plume so that they are available to read again. Should you wish to read the finished version in its entirety, well, you know what you’ll have to do…

(The two entries have been uploaded: here and here)