Monthly Archives: June 2014

In which I go foraging and make elderflower cordial

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While I was out taking photographs for my last blog, I noticed that the elderflowers were in full bloom. This set me thinking. I first tasted elderflower cordial 12 years ago. It had been made by a friend and she served it up as refreshments for those who were helping her to move house. At the time, I had a very sore throat and found the elderflower cordial both deliciously refreshing and very soothing. I asked her for the recipe with the full intention of making it the following year. However, later that same year I collapsed with the ME/CFS, putting an end to any such thoughts for some years.

Since then, I have occasionally bought commercially produced elderflower cordial, but never enjoyed it as much as that first taste. So, seeing the elderflowers in bloom, it occurred to me that at last my opportunity had come to try making it.

So, on Thursday, I went on a foraging expedition on my mobility scooter. It was a warm, sunny afternoon, just right for being out, so I decided to go well out on to the Somerset Levels to conduct my search. The roads I chose to follow have little traffic, just the occasional farm vehicle, so there was no need to worry that the flowers would be overly contaminated with traffic dust and fumes.

I returned home with the equivalent of 20 large heads. I have long since mislaid the original recipe, so I consulted the internet instead. Most of the recipes I found required citric acid as well as lemons. I didn’t know how easily I’d be able to find this, so I decided just to use more lemons instead. I wasn’t sure how many lemons would work well, so I found a recipe for traditional lemonade which suggested equal amounts of lemon/citrus juice and a syrup made from sugar and water. This sounded good to me, so I adapted one of the elderflower cordial recipes accordingly. This is what I ended up with:

10 large heads of elderflower
4 lemons
1 Grapefruit
350g sugar
350ml water

I didn’t want to make too much because I didn’t know how it would taste, so I put the rest of the elderflowers in the freezer for next time.

I squeezed out all the juice from the lemons and grapefruit. This came to about 350ml, so I used the same amounts for the sugar and water. I boiled up the water with the sugar until all the sugar had dissolved and put this in a bowl with the juice. Then I added the elderflowers. I also chopped up the skin of two of the lemons and put that in the bowl. Then I left it for 24 hours to brew. It reminded me of the hours I spent as a child crushing flower petals in water to make ‘perfume’ or mixing interesting looking potions from other ingredients found in the garden.

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Properly, I think I was supposed to let the sugar water cool before I put the elderflowers in, but I needed to go out, so I put them in whilst it was still hot. It seemed fine to me.

After 24 hours, I strained the mixture through a sieve lined with kitchen paper. Probably, I should have used muslin instead of kitchen paper, but the internet said kitchen paper would do. After waiting overnight, it still hadn’t finished draining, so I broke the paper and let the last of the liquid run through the sieve instead. I’m sure Mary Berry would be horrified, but that’s OK because she isn’t going to be drinking it.

Anyway, I ended up with about 800ml. I diluted this about 1:5 to taste and…

(Da dum tish)

It tasted like elderflower cordial. Now there’s a surprise!

Next time, I think I will add another lemon, just to give it a little more bite. However, I thought it turned out very well. Certainly, it’s disappearing very rapidly!

Consider how the wildflowers grow

Weeds! Don’t they just love this time of year? They grow and they grow and they grow, like the proverbial beanstalk. So, last weekend, I decided it was time to do battle. One of our smaller rose bushes was rapidly disappearing behind the wilderness that passes for our front border. Most of the invaders came out without difficulty. They were the sort that depend on sheer numbers to defeat you. However, there were two or three large dandelions that put up condsiderable resistance to removal and ultimately won their way. Their return is as certain as something out of Friday the 13th, though perhaps less sinister.

In the midst of the wilderness, I found several slugs and snails, some woodlice, some ants and a couple of spiders. The slugs and snails are the reason we grow weeds instead of lupins. Weeds are actually a whole lot easier to grow. What’s more, some of them are quite pretty, like the forget-me-nots, for instance. Weeds are also resistant to just about every bug you care to mention and they are extremely good at propagating themselves. And this, of course, is the secret of their success. The weeds are clever. Not that they know this. Or, if they do, they don’t care. All they are interested in is growing with reckless abandon wherever they should happen to find themselves. The weeds are cool.

I was at a church service a couple of weeks ago where this very point was made. The leader quoted from this book. I have no memory of the exact words because I only heard them once, but the essential point was that weeds grow without thought or effort or worry or even any sense of propriety. They just get on with it, which is why my lawn looks like this:

Daisies

Daisies

Not much use if you like to play bowls or croquet, but wonderful for making daisy chains. And so much more colourful than grass! I love them!

Meanwhile, the hedgerows are also bursting with colour and life at the moment. All the rain we had over the winter has made them more lush than ever. For example, I found some nettles on Saturday that were as tall as or taller than me:

Nettles

Nettles

On Sunday afternoon, we found some orchids springing up on the side of a hill:

Common Spotted Orchid

Common Spotted Orchid

Then, yesterday afternoon, making my usual detour back from the pharmacy, I found these:

Bramble flowers

Bramble flowers

Ox-eye daisies

Ox-eye daisies

Plantain

Plantain

Dog roses

Dog roses

Vetch

Vetch

They may not have quite the splendour of my ornamental roses, but they have their own wild, reckless and even intricate beauty. In one case, they also hold the promise of some delicious fruit. In the Bible, they are often likened to the enemy, for obvious reasons. But they also make a very good parable of God’s kingdom. They are like the mustard seed that grows big enough to provide a home to the birds. They are like the yeast that spreads throughout the whole dough. They get everywhere and they provide many good things – pollen, nectar, fruit, seeds, sap, shelter… Just as God’s people are asked to do.

‘Consider how the wildflowers grow. They neither labour nor spin. Yet I tell you, not even Solomon in all his splendour was dressed like one of these…’ (Luke 12:27)

Weeds are cool.

 

ME/CFS, B12 and the exercise conundrum

Today I went to see my physiotherapist. This was to check how I was doing since my last visit three weeks ago. I’d not been referred to a physiotherapist before this, so I have found it an interesting experience.

I was referred to the physiotherapist because of my poor mobility. Whilst this is at least partly to do with the ME, there was a noticeable decline prior to my diagnosis with B12 deficiency last year, which hasn’t fully reversed. The weakness, tingling and twitching in my left leg and foot has been particularly troublesome. The question in my mind has been how much of this is due to the ME and how much is a hangover from the B12 deficiency? Also, is there anything that can be done to improve it?

At my last appointment with the physiotherapist, the weakness in my legs was very apparent, particularly in the left one. Everything else seemed pretty normal. In fact, things were pretty much as my doctor had found them in March. The physiotherapist gave me a very light exercise regime to try and help strengthen my core muscles. She acknowledged that it would be counterproductive to attempt too much, but that any improvement in core strength was likely to be helpful to me.

I had a lot of difficulty with the exercises to start with. For the first few days, I found I could only do one or two repetitions of two of the exercises before brain and body gave up and I couldn’t find the right muscles any more. After a few days, I managed to complete the prescribed five repetitions of each of the four exercises… but then had stomach ache for the next two days and had to stop. I then tried again and the same thing happened. So, feeling decidedly pathetic, I decided to reduce the repetitions to three, which seemed to go better.

Then, last Monday, I had my regular 2-monthly B12 injection. Since then, I have been able to do all five repetitions of each exercise without difficulty.

Hmmmmm.

At today’s appointment, I told my physiotherapist that the aching and tingling in the back of my leg had also been better, though the muscles in my left foot still twitch a lot. She examined me again and said that the strength in my left leg was better than last time and much more comparable with that of the right.

So what’s going on? Is it just that I had been doing less standing or walking prior to this visit? Is it that the B12 injection has made a difference? It it that the exercises have helped in some way? Or is it something else?

We don’t know for sure, though it looks like the B12 may be a factor. Both the first exam and my doctor’s exam were 2 weeks before my injection was due. The second exam was one week after. But was the difference down to B12 or was that just coincidence? And how does this relate to the ME?

The thing is, my curious mind, it wants to know. It wants to know what’s going on in the brain, muscles and nerves and how this differs from what goes on in a healthy person. If the B12 is making a difference, then it wants to know why so much is needed to make that difference (I am taking mega supplements as well so it’s highly unlikely that I am anywhere near deficient even just before my injection). It wants to know. So, from time to time, it chases articles about both ME and PA all over the internet. It knows, of course, that some of its questions can’t be answered yet. However, that doesn’t stop it from looking… and becoming really excited when it finds the next tantalising piece of the jigsaw puzzle. It wants to know!

Meanwhile, I’ll continue with the exercises and see what happens. Probably, I should keep a diary. Properly. For two whole months. (Noooooooooooooooo!) Then toddle back to my doctor to report. I’m going back to see the physiotherapist in a month.

Prisoners in the Dark

Fence IOW

In the past few days, I have come across the story of Karina Hansen, who is a young woman with severe ME. 15 months ago, she was forcibly removed from her home in Denmark and taken to hospital, where she is under the care of a psychiatrist who believes her to have a psychosomatic illness. Her parents have been prevented from seeing her since she was taken away.

The full horror of this story may be difficult to understand for those who don’t know much about ME, so I’ll try to put you in the picture. ME, or Myalgic Encephalitis, was first described by Dr Melvin Ramsay following an epidemic at the Royal Free Hospital in London in 1955. It’s a long term condition that is triggered by a virus infection, usually a respiratory or gastrointestinal illness. A major feature of the disease is profound central nervous system exhaustion following any mental or physical exertion. This may be delayed by up to 3 days and recovery then takes several days or even weeks. Symptoms of this exhaustion may include headache, nausea, sleep disturbance, cognitive difficulties and muscle weakness and pain. The heart and respiratory muscles may be affected. Also, those used in swallowing. The illness is thought to affect at least 0.2% of the population in the UK – a prevalence similar to that of MS. However, difficulties of diagnosis make it hard to be sure.

The severity of the illness varies from person to person and in the same person over time. Although I have never been completely bed bound, I have got close enough to know something of the horror of those who are. In the early months of my illness, I spent most of my time in bed, unable to lift even a small jug of water. I could walk only a few paces. I had constant pain in my limbs, which did not respond to any over-the-counter painkillers. I could only tolerate very dim light and any kind of stimulation (such as reading or conversation) made me feel sick. Even in the silence, my brain raced around in confusion, constantly chasing the last thing that had been said to me. At night, sleep frequently evaded me, so prolonging the torture.

The exact cause of the illness remains unknown. Whilst Dr Ramsay was only able to find subtle changes in the nervous system using the techniques available at the time, he never had any doubts that this was a physical illness. It was classified by the World Health Organisation (in their International Classification of Disease) as such in 1969 and that classification has never been changed. More recently, there have been moves to change the name of the illness to Chronic Fatigue Syndrome (CFS). However, there is no direct reference to CFS in the ICD. It appears only in the index and the reference goes back to the entry for ME. Meanwhile, in the 1970s, two psychiatrists, who had never met Dr Ramsay’s patients, reinterpreted his data in terms of mental illness, triggering a debate that has been raging ever since. Which brings us back to Karina.

Basically, her story goes like this. She was diagnosed by several doctors, including two ME specialists, as having ME. She was severely ill and being cared for at home. Unable to move from her bed, she was quickly exhausted by any kind of stimulation – light, touch, sound, smell or the need to communicate. Her parents understood this and arranged her immediate environment accordingly. In May 2012, she gave them power of attorney, so that they could act in her best interests if she was unable to do so.

Her doctor became concerned that her condition might be deteriorating, so her case came to the attention of higher authorities. She was then offered treatment provided by the Research Clinic for Functional Disorders and Psychosomatics in Denmark, which offers psychologically based therapies such as Graded Exercise and Cognitive Behavioural Therapy. There is NO research evidence that these therapies have been used successfully with severely ill ME patients and plenty of anecdotal evidence that they have made such people worse. Hence Karina refused treatment and her parents did what they could to support her in this decision. Police, doctors and social workers then forced their way into the house to remove Karina and take her to hospital. And because her parents (and sister) did not agree to the proposed therapies, they have not been permitted to see her since.

I find this story heart breaking. Even if Karina were suffering from some kind of mental health problem (and there is no evidence that she was), how exactly is long term separation from the people that she loves supposed to help her with this? How is one mental health issue supposed to be helped by deliberately creating another? It makes no sense.

Sadly, this has not been the only such case. In July 2003, Sophia Mirza, was similarly taken from her flat in Brighton under the UK Mental Health Act. She spent two weeks in hospital and was released only following an appeal tribunal. Her condition then worsened and she died 2 years later at the age of 32. The initial post mortem revealed no obvious cause of death. However, material taken from her spinal cord later revealed damage to her nervous system. Following an inquest, her cause of death was recorded as Chronic Fatigue Syndrome – the first time ME/CFS was recorded as a cause of death in the UK.

If we contrast the experiences of Karina and Sophia with the care and attention that Stephen Sutton has received, it soon becomes clear that the way we understand the people around us has a profound effect on the way that we treat them. We know about cancer. We know what it does. Most of us have experience of someone who has had it, with the result that it attracts vast amounts of support for both care and research. Meanwhile, people with severe ME, whose daily experience of illness has been compared by some doctors to that of an AIDS patient in their last week of life, lie forgotten behind closed doors, often unable to communicate the distress that they feel. We don’t know. We don’t understand. So our efforts at care become both limited and distorted by wrong assumptions.

This needs to change. Following her death, Sophia was clearly shown to have had a physical illness. Yet still there are psychiatrists who deny this reality and who exert far too much power when it comes to both the management of ME/CFS and research into it. Hailed as experts, they continue to attract what limited money exists for research, rather than it being directed towards a greater biological understanding of this complex illness. Sadly, their therapies have sometimes been shown to benefit a small minority of more able patients (who may or may not have had ME in the first place), strengthening the illusion that their theories have scientific weight and their actions moral worth. Hence they continue to mislead others, blind to the harm they are doing.

“Of all tyrannies, a tyranny exercised for the good of its victims may be the most oppressive. It may be better to live under robber barons than under omnipotent moral busybodies. The robber baron’s cruelty may sometimes sleep, his cupidity may at some point be satiated; but those who torment us for our own good will torment us without end, for they do so with the approval of their consciences.”

                                                                                                                                                 (C.S. Lewis)

As I have said, this needs to change. Lack of cure is no excuse for lack of care. People like Karina need the compassion of those who are willing to take the trouble to understand, even if they cannot fix her body or keep her from death. And, for this to happen, the idea that ME is a psychosomatic illness needs to be finally put to rest.

I’ll be honest and say that I don’t know how to achieve such change. Karina’s parents have been banging their heads against a wall for longer than I would have thought possible. It’s like something out of the film Changeling. So I think change can only come through more public awareness and more biomedical research. Indeed, in the light of our recent elections, it seems to me that this is the kind of thing that the European Community should really be about. Karina and Sophia were divided only by nationality. We need shared understanding. We need governments and medical experts who will work together. We need a shared commitment to change.

Meanwhile, here in the UK, the current NICE guidelines for the management of ME/CFS are far from perfect, but one thing they do point to is the desperate need for more research. Campaigning has never been my strong point. I don’t have Stephen’s charisma. But I do know that there are people with ME who need exactly the same kind of compassion and support as was shown to him. So please share our story. Please remember those who spend their lives in darkness. And please offer help where you can.

More on Karina’s story: http://justiceforkarina.webs.com/

A charity that funds biomedical research into ME in the UK: http://www.meresearch.org.uk/